4.25.2010
Campground
Well, it has been awhile since I wrote. Several things have happened over that time. I will catch up on that now. First, I confronted the stress head on and feel much better for doing so. I have slept better than I have in a long time now, and I am enjoying the time to recharge the batteries, as it were.
On Wednesday I went to a counseling session and it helped me immensely to realize that I have been under loads of stress for some time now. Ir made me see what needed to be done to regain my life back. I have been taking steps all week to do just that. It remains to be seem how it will all play out, but I am getting some relief now so that is what counts.
On Thursday, I stayed all night at my sons house. I love their couch. I went there since I was going to babysit in the morning anyway so I made the trip the night before. I fell asleep and woke up to some movie on the tv that my son was watching. I cannot tell you what happened in the movie because I was zonked by the meds. Before I headed to my sons house, I mowed the lawn at the camper. It was supposed to rain this weekend so I mowed it before the rain came.
On Friday, I babysat little Gabrielle. She is teething so bad right now and she is miserable. Unfortunately, she was running a temperature so I gave her some motrin. She was so tired and fussy and would not take a nap. Her little nose was all stopped up and she had weak little eyes. Poor sweetie. As the day progresses, she began to vomit. After she vomited, she developed diarrhea as well. At that point, it was time to call the parents. Stacey came home early from work and poor little Gabi was doing her best to smile and be happy but she was so tired and not feeling good it was hard for her to do. Over this weekend, she has gotten better, although the teeth are still an issue for her. I wish they would come in!
I broke out in cold sores this weekend as well. Actually, they began last week but came to a head this weekend and popped and are now on the mend. I had quit taking the lysine every day like I used to so they found their way back. Needless to say, I went out and got more lysine to stop it from happening again. I hate the blasted things and they are quite painful when they develop.
I know, I have lupus and live with chronic pain so why am I such a baby about cold sores? Well, they irritate me and it hurts to eat and talk, two of my favorite things. Not to mention the disfiguring of my face… well, lets just say I am not a fan of them, ok?
It has been an on and off rainy weekend here at the camper. I was surprised how many folks came out despite the rain! I think a bad day camping is better than a good day working anytime so I cleaned some more of the camper and scrap booked five pages and two cards! The rain made me be more productive for sure.
Monday, April 26, 2010
4.20.2010
04.20.2010
Campground
Well, I am back and had a very busy day. This business of paying bills and getting groceries is a rough one at times. I detest bill paying and enjoy grocery shopping. I love to coupon and get bargains and deals. My most famous couponing excursion was when I Bought almost $400 worth of items, and had to buy chewing gum to make the total go to the positive. You see, they will not let you NOT pay anything, you have to have it in the positive so I got the chewing gum. It is like a game of seeing who can out smart whom. I stockpiled so much that I gave away a lot of it! That was a great feeling too.
I am back at the campground tonight. It was a beautiful day today and I enjoyed formt he car, not the campground. Sad, but true. I did get some wallpapering done today though, and feel like I got quite a bit done.
I also reconnected with some old and dear friends of mine. It was delightful to chat with them and I look forward to seeing more of them in the days ahead! We lost track of each other as our kids started having grands, but I am so glad to get that connection back.
I am still under a lot of stress. I hope that things will get better in the near future, but for now, it is all systems on stress overload. I cannot share why at this time. Just know that stress is here and at the moment killing me softly (like the song). This too, shall pass and on the other side I hope to reach an inner peace and fill each day with spiritual pursuits and friendships galore!
I did get to babysit some of the grands today while my daughter went to the store. I had a blast! I tell ya, those kids are dynamite! I still have not recovered from having Cameren this weekend, so I still need rest…lol. Tomorrow, I have one more errand to take care of and then I can finally relax some more.
I am so thankful for each day given to me to bring praise and honor to Jehovah and to live to the fullest! I am thankful for my children and grandchildren! I am so thankful for my extended family and friends! I am blessed beyond compare when it comes to being surrounded by loving and caring people. I never want to forget that.
Have a great day everyone! I am going to try! Toodles!
Campground
Well, I am back and had a very busy day. This business of paying bills and getting groceries is a rough one at times. I detest bill paying and enjoy grocery shopping. I love to coupon and get bargains and deals. My most famous couponing excursion was when I Bought almost $400 worth of items, and had to buy chewing gum to make the total go to the positive. You see, they will not let you NOT pay anything, you have to have it in the positive so I got the chewing gum. It is like a game of seeing who can out smart whom. I stockpiled so much that I gave away a lot of it! That was a great feeling too.
I am back at the campground tonight. It was a beautiful day today and I enjoyed formt he car, not the campground. Sad, but true. I did get some wallpapering done today though, and feel like I got quite a bit done.
I also reconnected with some old and dear friends of mine. It was delightful to chat with them and I look forward to seeing more of them in the days ahead! We lost track of each other as our kids started having grands, but I am so glad to get that connection back.
I am still under a lot of stress. I hope that things will get better in the near future, but for now, it is all systems on stress overload. I cannot share why at this time. Just know that stress is here and at the moment killing me softly (like the song). This too, shall pass and on the other side I hope to reach an inner peace and fill each day with spiritual pursuits and friendships galore!
I did get to babysit some of the grands today while my daughter went to the store. I had a blast! I tell ya, those kids are dynamite! I still have not recovered from having Cameren this weekend, so I still need rest…lol. Tomorrow, I have one more errand to take care of and then I can finally relax some more.
I am so thankful for each day given to me to bring praise and honor to Jehovah and to live to the fullest! I am thankful for my children and grandchildren! I am so thankful for my extended family and friends! I am blessed beyond compare when it comes to being surrounded by loving and caring people. I never want to forget that.
Have a great day everyone! I am going to try! Toodles!
4.19.2010
04.19.2010
Cross’s Campground
I am still camping and today has been so relaxing and unproductive, other than refreshing my soul. I slept until 1:00pm and am already laying back down and it is 7:00 pm! I needed to recharge the batteries and I guess I am!
This has been a beautiful day, with the sun shining and mild temperatures in the 60’s. Not too hot, not too cold. I was sitting at the table outside, reading a book, when a shadow danced across my book and startled me. I looked up into the trees above my head and saw a squirrel running across the branches above my head. If I had not seen his shadow, I may have missed him altogether.
I laid my book aside and watched him frolic from tree to tree. It is so quiet out, during the week here, when no one else is around. The birds were playing swooping games with each other and singing their timeless melodies and the trees here at my campsite are in full bloom regalia of purples and whites and greens! The fragrances are enchanting too. I have little shoots of flowers (that I planted last year) poking out from the dirt and they are about two inches high. I have long forgotten what I planted, so the surprise will be what flowers do indeed show their blooms, when they get big enough! I love surprises like that.
I went for a ride in the golf cart and found a little black dog that someone tied up and left here, poor thing. It is not a friendly little dog either, but my heart went out to it because of the cooler temperatures at night and the fact that I had not seen anyone here to feed it today. I just happened to have dog food, so I went and got it and despite the ferocity of the dog, I fed it. I cannot stand to see a dog neglected like that. Poor thing, was still barking and baring his teeth as I left, but I noticed that the food was gone when I returned. It is sad to think someone tied this little dog outside and left it here to fend for itself until they returned. I mean, if they do not want the dog, give it away, at least it has a chance of getting a good home that way.
I am bedding down for a nice rest after a peaceful day. I hope to get things done tomorrow and then return. I have bills to pay and running to do. I hope things go well.
Cross’s Campground
I am still camping and today has been so relaxing and unproductive, other than refreshing my soul. I slept until 1:00pm and am already laying back down and it is 7:00 pm! I needed to recharge the batteries and I guess I am!
This has been a beautiful day, with the sun shining and mild temperatures in the 60’s. Not too hot, not too cold. I was sitting at the table outside, reading a book, when a shadow danced across my book and startled me. I looked up into the trees above my head and saw a squirrel running across the branches above my head. If I had not seen his shadow, I may have missed him altogether.
I laid my book aside and watched him frolic from tree to tree. It is so quiet out, during the week here, when no one else is around. The birds were playing swooping games with each other and singing their timeless melodies and the trees here at my campsite are in full bloom regalia of purples and whites and greens! The fragrances are enchanting too. I have little shoots of flowers (that I planted last year) poking out from the dirt and they are about two inches high. I have long forgotten what I planted, so the surprise will be what flowers do indeed show their blooms, when they get big enough! I love surprises like that.
I went for a ride in the golf cart and found a little black dog that someone tied up and left here, poor thing. It is not a friendly little dog either, but my heart went out to it because of the cooler temperatures at night and the fact that I had not seen anyone here to feed it today. I just happened to have dog food, so I went and got it and despite the ferocity of the dog, I fed it. I cannot stand to see a dog neglected like that. Poor thing, was still barking and baring his teeth as I left, but I noticed that the food was gone when I returned. It is sad to think someone tied this little dog outside and left it here to fend for itself until they returned. I mean, if they do not want the dog, give it away, at least it has a chance of getting a good home that way.
I am bedding down for a nice rest after a peaceful day. I hope to get things done tomorrow and then return. I have bills to pay and running to do. I hope things go well.
4.18.2010
My Life
04.18.2010
Still camping
Cameren is here now and believe me, I have not had a moment to spare. He is busy, like the energizer bunny, all the time and never winds down! He is also a sweetie so it evens out the rough edges. His mom called him this morning and he started crying and said he wanted to go home. I knew he was homesick but wasn’t going to tell his mom. Instead, he got on the phone and started crying then said he wanted to go home. Well, subtlety is not his strong suit I guess.
As for yesterday, we went to walmart, then back to camper where Cameren went on a hay ride all by himself! Afterwards, Grandma Peggy came over and we went on golf cart rides and then out for dinner at The Depot, a little ice cream shop that serves food too. Cameren had nuggets and fries and a hot fudge milkshake. I had a pulled pork bbq sandwich and shared Cam’s fries. I got a butterscotch milkshake. Grandma Peggy had a cheeseburger and fries with a hot fudge milkshake as well.
Once we returned, Cam could barely keep his eyes open, so I made him go to bed, and I thought he went to sleep, until he came out and showed me otherwise. He finally went down around 11 pm. Unfortunately, I did not sleep well so I was up and down all night. Talk about exhausted today! Oy vey!
Now, we are resting after a breakfast of donuts and raisins. Being with grandma is fun! Not necessarily nutritious but fun!
It got down to the 30’s overnight so we have not been outside yet. We are staying inside where we have a furnace to keep us warm until the sun warms it up better outside. It is still better than not being camping! Cam is getting stir crazy but hey, meemaw isn’t ready to go outside in the cold yet.
The cat has made an uneasy peace with Cam. She is not sure about him yet but is giving him the benefit of the doubt. She curled up with us last night and slept between us. Of course, it may have been because of the cold too. Who knows for sure but she seems ok with Cam.
Today lies ahead of us, full of possibilities… I will report more later.
As of 8 pm… well, Cameren has left with his mommy. I had forgotten how much energy it takes to keep a boy occupied. After my earlier post, we went around on the golf cart a few times, then fishing with cousin David, where Cam caught three fish! I even caught one! Next stop was the playground with his cousin Destiny, before heading back to camp for a nap (or so I thought…lol). Actually, he did take a nap but woke up in a foul little mood. His mom was on the way by then so he was loaded up and almost ready to go when she got here.
Since his departure, I have done…. NOTHING…except get cleaned up and take my meds and lay down to type this. I am exhausted beyond belief! No kidding! My knees are killing me with pain, and I have no more pain pills to take…WAH! I am also on the last dose of my pred this time around so I am feeling the effects of that as well. So, I think I will lay down and sleep a day or so until I feel a little better! I mean, I have nothing planned until Tuesday so why not relax and get refreshed for once with no
distractions (except for a cell phone I can turn off). Toodle pip all and I will report again when I wake up!
04.18.2010
Still camping
Cameren is here now and believe me, I have not had a moment to spare. He is busy, like the energizer bunny, all the time and never winds down! He is also a sweetie so it evens out the rough edges. His mom called him this morning and he started crying and said he wanted to go home. I knew he was homesick but wasn’t going to tell his mom. Instead, he got on the phone and started crying then said he wanted to go home. Well, subtlety is not his strong suit I guess.
As for yesterday, we went to walmart, then back to camper where Cameren went on a hay ride all by himself! Afterwards, Grandma Peggy came over and we went on golf cart rides and then out for dinner at The Depot, a little ice cream shop that serves food too. Cameren had nuggets and fries and a hot fudge milkshake. I had a pulled pork bbq sandwich and shared Cam’s fries. I got a butterscotch milkshake. Grandma Peggy had a cheeseburger and fries with a hot fudge milkshake as well.
Once we returned, Cam could barely keep his eyes open, so I made him go to bed, and I thought he went to sleep, until he came out and showed me otherwise. He finally went down around 11 pm. Unfortunately, I did not sleep well so I was up and down all night. Talk about exhausted today! Oy vey!
Now, we are resting after a breakfast of donuts and raisins. Being with grandma is fun! Not necessarily nutritious but fun!
It got down to the 30’s overnight so we have not been outside yet. We are staying inside where we have a furnace to keep us warm until the sun warms it up better outside. It is still better than not being camping! Cam is getting stir crazy but hey, meemaw isn’t ready to go outside in the cold yet.
The cat has made an uneasy peace with Cam. She is not sure about him yet but is giving him the benefit of the doubt. She curled up with us last night and slept between us. Of course, it may have been because of the cold too. Who knows for sure but she seems ok with Cam.
Today lies ahead of us, full of possibilities… I will report more later.
As of 8 pm… well, Cameren has left with his mommy. I had forgotten how much energy it takes to keep a boy occupied. After my earlier post, we went around on the golf cart a few times, then fishing with cousin David, where Cam caught three fish! I even caught one! Next stop was the playground with his cousin Destiny, before heading back to camp for a nap (or so I thought…lol). Actually, he did take a nap but woke up in a foul little mood. His mom was on the way by then so he was loaded up and almost ready to go when she got here.
Since his departure, I have done…. NOTHING…except get cleaned up and take my meds and lay down to type this. I am exhausted beyond belief! No kidding! My knees are killing me with pain, and I have no more pain pills to take…WAH! I am also on the last dose of my pred this time around so I am feeling the effects of that as well. So, I think I will lay down and sleep a day or so until I feel a little better! I mean, I have nothing planned until Tuesday so why not relax and get refreshed for once with no
distractions (except for a cell phone I can turn off). Toodle pip all and I will report again when I wake up!
April 17, 2010
04.17.2010
I am back in my happy place and for once at peace again. It has been a trying few weeks but I have persevered and made it to the place I am most at ease, by myself, in my happy place. The camper (which is actually a 29 foot travel trailer) is cluttered and still needing cleaning and things to be put away, but time is to be enjoyed here and so the things get done at a pace that is much slower, and I am the one who makes the decisions about what I am going to do and when. It is refreshing, to say the least.
Well, I am sitting here having my morning coffee and awaiting the arrival of my grandson, Cameren. He is going to stay here with me and spend some “alone” time with his meemaw. I love having the kids one on one. It means we get to create special memories. I can concentrate on their own special needs and pay my undivided attention tot hem. Since all of my grands have siblings, it is special indeed when they get to have alone time. There is no competition for anything. They are the universe, and they love it! I love it too! Some of my most cherished childhood memories are of time spent with my “memie” and “poppie” without my other sisters being around. Now, it is my turn to indulge my own grands and make the same types of special memories for them to remember as well.
Anyway, I will add more later this afternoon. It is a chilly morning, and I have to go to town with Cameren when he gets here, but it should get up to around 60 this afternoon so all systems go for fun times. All the cousins will be here and there will be plenty of kids so Cameren will have fun for sure!
I am trying out some different ways to post to this blog and this is a new one I liked. If you can, I would appreciate some feedback on if it
is a good one. Thanks!
I am back in my happy place and for once at peace again. It has been a trying few weeks but I have persevered and made it to the place I am most at ease, by myself, in my happy place. The camper (which is actually a 29 foot travel trailer) is cluttered and still needing cleaning and things to be put away, but time is to be enjoyed here and so the things get done at a pace that is much slower, and I am the one who makes the decisions about what I am going to do and when. It is refreshing, to say the least.
Well, I am sitting here having my morning coffee and awaiting the arrival of my grandson, Cameren. He is going to stay here with me and spend some “alone” time with his meemaw. I love having the kids one on one. It means we get to create special memories. I can concentrate on their own special needs and pay my undivided attention tot hem. Since all of my grands have siblings, it is special indeed when they get to have alone time. There is no competition for anything. They are the universe, and they love it! I love it too! Some of my most cherished childhood memories are of time spent with my “memie” and “poppie” without my other sisters being around. Now, it is my turn to indulge my own grands and make the same types of special memories for them to remember as well.
Anyway, I will add more later this afternoon. It is a chilly morning, and I have to go to town with Cameren when he gets here, but it should get up to around 60 this afternoon so all systems go for fun times. All the cousins will be here and there will be plenty of kids so Cameren will have fun for sure!
I am trying out some different ways to post to this blog and this is a new one I liked. If you can, I would appreciate some feedback on if it
is a good one. Thanks!
Thursday, April 15, 2010
Depths of Despair
Recently, I am having some real issues with my health. Lupus has been flaring, despite the best efforts to keep it under control. For the first time since I have had this disease, I felt out of control and ready to give in. Give in to what, you may ask. I was ready to give up the fight and give in and have peace. Depressed, yes, who wouldn't be when yoru body is wracked with pain, your joints hurt, your fingers are swollen, and you can hardly walk. This time, though, it was different.
My lupus has started into the neurological realm now and I see daily things changing that I cannot control. Things like, my memory for instance. Sure, I joke about this but it terrifies me to think I cannot remember things at time. The fog I am used to having is mild compared with this. It is frightening to think that, like alzheimers, I may sink into the world of no memories. It would scare anyone.
I am having more migraines, more pain, and feeling lost in the shuffle lately. Combine this with an eye doc telling me I am developing cataracts, and my straws are overloaded and my back is breaking. I know this is a little thing but it virtually sent me over the edge. I mean, come one, what else is going to happen? There I said it.
The unknown is scary. I can deal with many of the manifestations this disease provides me with, however, losing my memory is quite another thing. The edge came closer and I was ready to go on over. I am prepared to die, as it were, but I prefer to live right now. I have a lot of unfinshed business to take care of. Grandchildren to spoil and love, family to love, and friends and spiritual brothers and sisters to love as well. I have been saying that a lot lately to those around me. I love you. Simple words but powerful in their meaning. I want everyone who has touched my life to know how much it means ot me that they are my friends and family and that I love them all.
Not to get maudlin here, but the edge was there, all I had to do was give up. I can still see it. However, I have firmed my resolve now and feel much better about it. I am going to live my life and watch those grands grow up into young adulthood and be there for their important events. I have seen the other side, almost wanted to go there, but now I am determined that I am here, I am living, and I refuse to succumb to the edge. The precipice is still out there, waiting... for how long who knows? In the end, I can only think about today and what I have to live for. That will sustain me. Sharing my love of God with others, helping friends when able, and loving each person who is in my life. These are the things that are important to me.
I am glad I saw the edge. It knocked me out of the blue funk and back into the land of the living. Praise Jah for all the friends I have and for the will that was given me when I was at that low point. Thanks for the encouragement you gave me and this life that I am trying to improve to show You that it is not in vain. You alone are the Most High and You have given me the strength to continue. Thank you Father.
Borrowed from Kendra's blog this is a must read!
Thanks Kendra and cure4lupus.org for posting this on your blog. I "borrowed" it because it is so true. I also added a few of my own to it as well. Thanks so much!
Don't Say That
Some very well intentioned family members and friends of Lupus patients can do and say things that can frustrate and hurt the patient. Here are a few examples:
"Lupus, my cousin has that, it's not that bad." - Lupus is very different from person to person and can even change drastically in the same person.
"Feeling pretty good today?" - This can make us feel like we are disappointing you if the answer is no.
"You look like you feel pretty good" - Looks can be deceiving.
"How do you feel?" - It's not that you should never ask this, we just get it ALL the time, sometimes we just want to be a "normal" person that is not focused on Lupus 24/7.
"It must be nice to not have to work." - We would not only gladly exchange our illness for work, but those of us who have been disabled by it, miss working and contributing in that way.
"You just want attention" - We certainly don't want attention for this. A lot of times we get embarrassed by the focus and attention for something not only negative, but something we have no control over.
"You never want to go anywhere or do anything" - Believe us, we wish we could a lot more than you do! Please understand that we just aren't always capable.
"I heard (...) cures Lupus" - It doesn't matter how you fill in the blank, just don't say it. Everybody and their brother has some "miracle cure" Number one we have tried it all already, and number two if it really cured Lupus it wouldn't be a secret, we would know about it already!
"All you need is..." - More sleep, this vitamin, more exercise, etc. It doesn't matter how you finish the sentence, just don't say it. People are constantly offering us unsolicited medical advice. Unless you have a medical degree, we will stick to our doctors' advice, that is enough to deal with!
Complaining about trivial things - Please use our experiences to learn to value the important things in life! Complaining about stupid, meaningless things can feel like a slap in the face.
Talk only about Lupus - While we do need to talk about it sometimes, we get real sick of it real quick. Sometimes we just want to do something fun and silly and try to forget we are sick for a while.
My adds are:
"Oh, yeah, right, you cannot help me" This implies that we are lazy or incompetent and do not want to be of assistance. In fact, the opposite is true. We were more than helpful when able, and if not able, we need respect as a person with feelings. Do not belittle me.
"You look like you have put on a few pounds" This is one that I get from time to time, more in my past. This implies that I am out of control eating and doingthis to myself. In fact, I take oral and IV steroids that cause me to balloon up each and every time and pointing out the obvious only makes my self esteem hurt. I know I have gained weight and I want to get it off, but I am sick and need these (poisons) meds to survive. Please think before you speak.
The best advice is to follow the patient's lead. They will communicate what they need and hopefully understand that you are just trying to help even when you say the wrong thing.
Wednesday, April 14, 2010
wednesdays news
Well, I had some great news today and I wanted to share. First, I have lost eight pounds, which amazes me since I have been on prednisone for over a week now. Usually I gain weight, this is a new experience for me to lose weight. So this was good news.
The great news is that two dear cousins, Dixie and Trish, went out to the campground today and cleaned my mil's camper. Not only did they clean it, they washed the curtains, put new slipcovers ont he seats, bought linens and made the bed, got her dishes to use in her camper, and also bought her toiletries. Now the only thing she needs is food and her clothes, it is ready. A big thanks to them for doing that! It is a load off my mind that they took care of it for my mil. How precious they are to me!
Another plus to the day is that I got to see some of my grands and play with them. My great nephew was here too. It was a win/win day for me all around.
I am planning on going ot the campground on friday after I babysit my littlest grand. It is supposed to rain but who cares, it will be quiet and peaceful and relaxing! Ah, I cannot wait. The thought of it makes me feel better. Imean, isn't is nice to lay in bed and listen to the rythym of the falling rain on the roof of the camper. It is one of the most relaxing things I know of.
I still have to clean my camper up as well. It has been power washed and looks good on the outside, however, the inside needs cleaning better. So, the rain is a blessing because I have to clean the camper instead.
Anyway, I am muddling through the rest of this week to get to the weekend. I have plans for next week too and will be busy so I have to make hay while the sun is shining or raining as it were. I am feeling much improved as for the aching and pain but even with the prednisone, it is still there in the background and rears its ugly head from time to time to remind me not to get too comfortable.
Thats it for me today....hope to blog once more before camping but if I dont, I will post the blogs I do there. Thanks and blessings!
Sunday, April 11, 2010
Another day, another seemingly wasted day
Hi all. Today I had big plans to attend my spiritual meeting, to get thngs done and make sure I did these things. However, the wolf had other plans. It seems I got up this morning, and could not function. I went back to bed and slept until late afternoon. I am tapering down on the prednisone and I guess this is the effect it is producing now. I truly hate taking it and all it does to my body. Now this, sleeping a whole day away. What a waste of a beautiful day.
In the meantime, here I am updating the day. I was proud to submit my photo and a brief message to raise awareness of lupus. A fellow lupie is doing this project and I posted it on my facebook page for others to do the same as well. Jowanna also allows family members to send a photo and how lupus affects them too. It is a worthy project!
I am having difficulty trying to get myself motivated with all the seasonal activities I need to get accomplished. I have been at the camper several times and done quite a bit but I have so much more to do yet. Add the stress of several other thngs and you get the picture. So, in an attempt to get things done, I am going to make a list, yes, a list. I never like to make lists because it is hard for me to be realistic about things to do. I end up with a list that is astoundingly long because I get on the subject and find many more things to add. Then, in turn, I get depressed because there is no way I can get it all done. I have found if I can make things bite sized, I get more done. So, maybe a small list of essentials will suffice.
On a positive note, I have not gained any weight on the prednisone this time around. Yet. I always gain weight but so far so good. I have been munching on things like cheese, and carrots and such and it seems to be making a difference. I need to make a note of it.
On the negative side, along with prednisone comes the headaches with tapering down. It is horrible. It is worse than a migraine and induced because of the lower doses of prednsone. It is my body's way of saying, hey give me more prednisone. So, the poison gets me in another way while helping me it hurts me. Go figure. That is why we need some new meds for this disease. I mean, come on, over 50 years is a long time to not have any new meds for this disease. The ones we use are so harmful to our bodies that it is criminal, but necessary for life.
For anyone not aware, I am in a drug trial for the new drug that is most hopeful for lupus. It is called Benlysta. It is my hope that they get it approved soon, since so many people are losing their battles lately. We need a new med or a cure!
Well, time to get to bed for now. Take care everyone!
Saturday, April 10, 2010
Today, in my life
Well, I am back. I have not blogged in a few days so I do actually have a few things to report. The prednisone is doing its thing....I have been working and working on getting things done. Like my grandma used to say, I am making hay while the sun shines.
I have been working on opening up the camper, and getting my mil's house cleaned up. I have been taking care of my mil because she is still sick and she had to call off work again. Hopefully, she is on the mend now. I also have a few other issues but I will not go into them except to say I am under tremendous stress right now and hope it will soon subside.
The weather has not been helping me out though. It has gone from 81 to the low 30's in two days. Granted, the 30's were overnight but still, I feel it in my body.We have had several fronts moving through and I feel them. Otherwise, I have been ok since the prednisone was started. Busy with energy, but that will pass when it stops.
I was wondering if anyone breaks out in the lupus rash when you start prednisone. I did this time. I did not have one prior to the prednsione, but now it is present. I was just wondering...
Anyhoo, spent the day at the campground getting mil set up and moved. She has not been out of the house for awile due to her illness but she felt well enough to try it today and we spent time with familoy and friends andeven had supper with them. It was a lot of fun. My dil brought my littlest grand to visit too. All in all, it was relaxing and fun.
Now, tomorrow to the meeting, then I will evaluate the next moves to make getting things done and resolved. I need to de-stress myself and get my self in gear so I can use this energy while it is provided and then afterwards I can rest.
I guess I really did not have a lot to tell. Felt like more...
Wednesday, April 7, 2010
Todays news
April 7, 2010
Well, today is day two of my new course of prednisone. I broke down and finally called doc to ask for some. For those who are unaware, I will do anything to keep from taking prednisone. I mean, ANYTHING. However, I was getting worse by the day and this flare was beginning in earnest, so in order to be able to just function, I had to call doc and request the poison. The flare was getting to the point of me not able to move or even walk. It hurts so bad just to move that if I had been able, I would lay in bed all day. I know how hard it is to function like that.
Since it is the beginning of the camping season, I have a lot on my plate, opening the camper up and getting organized for “living” at the camper. Not to mention, I have been under a tremendous amount of stress lately that I will not go into at this time. These are the reasons for the flare I am sure. Add the weather changing from warm, to snow, to warm, then storming and you see the progression from everyday pain to flaring pain.
I am sitting at the camper now, at my table, writing this blog. It is relaxing to just sit outside, and listen to the wind blow, the birds singing, and the grands playing. I call my grandchildren, the grands for short. I have four of them here with me now. They love to camp and love the outdoors just like me. Right now I have Brianna, who is 12, then Abbey, who is 10, MacKenzie, who is7, and Audrey, who is 5.
This is a no drama zone, which is a misnomer since I am sharing a trailer with four girls. Two of which are in full blown puberty! Hormones raging and drama all around! It is refreshing to me to get to share time with them and they are always so good when they are here. Well, most of the time they are. There are many activities to keep them occupied so I am basically the “base camp” for their roamings in and around the campground.
As I am writing this, they are in the woods, gathering firewood. They all have their own walking sticks that I carved for them. They have their names on them and they told me how to decorate them. It is a hobby of mine that I enjoy doing when out here and when my hands cooperate. I let them pick the wood out, then I strip the bark off, sand it, use a wood burner to decorate it with pictures and graphics, burn their names on it, then stain and finish it. It is a rite of passage that when they get old enough to pick out their sticks, they have me make one. I have two grands who are still too young for sticks yet.
My youngest son, Dennis, got home safe from Las Vegas last night and he is expected to come over today as well. He will be bringing his 7 month old daughter, Gabi, with him. She is my youngest grand. Dennis and his fiance, Stacey, went to Vegas to visit her parents, who live there after moving from Ohio. They spent a week there and we sure missed them. I get to babysit Gabi every Friday and it was tough not seeing her this past week. She is one of those smiling, happy babies that bring you joy just by being there. She rarely cries, however, her parents tell me otherwise. I refuse to believe them since she is always good around me. It will be fun to see them after their trip.
Today agenda for me is not much to do. I am planning on just relaxing and playing with the grands. Then, after they leave, I will clean the camper and probably go back home for the night. It remains to be seen if I get to stay another night or go home. I would prefer to stay but what I want is not necessarily what happens. As much as I would like to remain reclusive and enjoy the ambiance of nature, I realize that the responsibilities of life are always pressing into me and making me do things that I really wish I didn’t have to. You know, being responsible and an adult. This is like play time for me, being a kid again and experiencing the renewal of life in nature and the world. Seeing life through the eyes of a child, and becoming like a child just by being around them. Watching the trees bud and the leaves open up, seeing my flowers planted last year become a new green shoot, fresh out of the dirt.
As I sit here surrounded by all the natural beauty that God provides, it does renew me as well. As of late, I have been in a blue funk. To put it mildly, I have been depressed. I have had an onslaught of new things occurring with this lupus. As we change, so does the wolf. I am developing neurological manifestations that have robbed me of memory (short term), and pain in my feet and hands (neuropathy). Ihave developed cataracts that are fast developing and will need to have them removed within the year. I know this is a small issue for most people, but when you are inundated with small things they become big things and can make you get so depressed you do not want to go on and fight. I have been there recently. It is a black place indeed. It is, of course, honesty that makes me tell of this. I want to be brutally honest about the wolf and how it affects me. This is the first time it has done this to me but I feel sure it is not the last time.
I wrote the above sectionw hile at the campground. I am now home and wide awake. I hate prednisone! Have I mentioned that? So, I will blog here and post then try to sleep. I went back on the neurontin tonight too. I need some relief from all the things that are ailing me. Anyway, I am sure not many people really read these posts so it is an exercise in venting at the very least. Blessings one and all! Until we meet again...
Monday, April 5, 2010
Future blog posts during the "season"
As many of you know, I camp during the "season" from April until November at a permanent campground. There are a lot of good things about doing that. One of the negatives is that they have no wifi so I cannot post daily like I want to.
In the spirit of doing daily blogging, I will compose my posts and date them, then when I can get to a hotspot, I will post them individually. That means that one day I may post seven bloggings but they are all different daily posts.
I wanted to let you all know this so you will understand why I do not post, then all of a sudden I post a lot of entries.
Thanks and be seeing more fo you soon!
Tuesday, March 30, 2010
Another day, continued
Well, today is one of the longest I have had in some time. I was up all night last night, taking care of my mil. I took her to the doctor yesterday, and they said she had double pneumonia, bronchitis, fever, and coughing. After we got home, her coughing increased to the point that she was vomiting everything she attempted to drink. She ended up in the recliner where she caught a few snippets of sleep off and on. The doctor gave her an inhaler, someprednisone, and a z-pack. However, when she was still struggling this morning, I called the doctors office and asked what I should do. They called back and said bring her back in now. So, I did.
This time, the doctors were more concerned because my mil was extremely pale, clammy, and her coughing was much worse. They did a chest x-ray and when it came back, they said they did nto see anything but that it could develop in the next 8-12 hours. They gave her a new rx for phenergen/codeine cough syrup, gave her a shot of phenergen and another antibiotic, and said that if she is not better by suppertime tonight, we are to take her to the er and she would be admitted. The doctor explained that they have to do this process because of insurance and where they could have just admitted her in the past, now they have to do all these things BEFORE she could be admitted. What a crock!
So, now I am running on very little sleep, and having to remail awake because they are bringing her a nebulizer and medicine for breathing treatments and someone haas to be awake to get it. I plan on trying to sleep a little on the couch while I wait.
As for me, I hurt, am exhausted, and hopefully will not flare up too badly because of this. I feel very strongly about taking care of my elderly parents (or parent in law), and I feel it is a priviledge to provide care for them when they need me. It is a God given command that we look after our families and so it is not to be taken lightly. I feel that obligation now and will do what I can to provide her with the best care possible and in my power.
Also wanted to add that my woozie woo woo pill was supposed to start the double dose today but I postponed it due to all the things going on. I cannot be woozie and maintain. I will begin it when able to.
I am sad that it does nto look good for attending the Lords Evening Meal. I have never missed one before, but this time it may be the first. This would be my 14th year celebrating it. My mil said it will be only the second one she has missed ( in like 40 some years). I cnanot leave her here alone and she is contagious so we will see how it plays out. On the plus side, we can tie in by phone at least so that seems to be our option right now (considering hubs is sick too). So, the only thing that I celebrate in accord with Jesus' command, I will not be attending, due to this sickness. I feel sure Jehovah will understand and I hope not to ever miss another one. It is what it is and time and unforeseen occurences befall us all.
That is my day so far. Maybe catch a few winks before machine arrives... toodles everyone!
This time, the doctors were more concerned because my mil was extremely pale, clammy, and her coughing was much worse. They did a chest x-ray and when it came back, they said they did nto see anything but that it could develop in the next 8-12 hours. They gave her a new rx for phenergen/codeine cough syrup, gave her a shot of phenergen and another antibiotic, and said that if she is not better by suppertime tonight, we are to take her to the er and she would be admitted. The doctor explained that they have to do this process because of insurance and where they could have just admitted her in the past, now they have to do all these things BEFORE she could be admitted. What a crock!
So, now I am running on very little sleep, and having to remail awake because they are bringing her a nebulizer and medicine for breathing treatments and someone haas to be awake to get it. I plan on trying to sleep a little on the couch while I wait.
As for me, I hurt, am exhausted, and hopefully will not flare up too badly because of this. I feel very strongly about taking care of my elderly parents (or parent in law), and I feel it is a priviledge to provide care for them when they need me. It is a God given command that we look after our families and so it is not to be taken lightly. I feel that obligation now and will do what I can to provide her with the best care possible and in my power.
Also wanted to add that my woozie woo woo pill was supposed to start the double dose today but I postponed it due to all the things going on. I cannot be woozie and maintain. I will begin it when able to.
I am sad that it does nto look good for attending the Lords Evening Meal. I have never missed one before, but this time it may be the first. This would be my 14th year celebrating it. My mil said it will be only the second one she has missed ( in like 40 some years). I cnanot leave her here alone and she is contagious so we will see how it plays out. On the plus side, we can tie in by phone at least so that seems to be our option right now (considering hubs is sick too). So, the only thing that I celebrate in accord with Jesus' command, I will not be attending, due to this sickness. I feel sure Jehovah will understand and I hope not to ever miss another one. It is what it is and time and unforeseen occurences befall us all.
That is my day so far. Maybe catch a few winks before machine arrives... toodles everyone!
Monday, March 29, 2010
Doctors visit today
I went to see my rheumy today. They took vials fo blood, and discussed the new meds I am taking. The drug trial I am in is progressing nicely and hope it will be approved this year.
On the plus side, he told me to call my neurologist to discuss my dosage of the neurontin. The reason I even discussed it with him is that when I got into bed last night, I fell out again. I fell onto the floor next to the bed. Normally, there is nothing on the floor. However, since we are getting ready to go to the campground, I have boxes stacked and so when I fell, I fell into boxes from my shoulders down. I hit my right leg on a box and it caused a leg cramp on the upper right leg as I was laying on top of these boxes. Poor hubs, not only did I wake him up when I fell, now I was screeching because I have this leg cramp! I was trying to stretch my leg out up into the air and hubs was trying to get me up off the floor. It was a comedy of errors.
So, in retrospect, today was a normal visit to the rheumy, and not so normal in that I am bruised from the fall last night.
In the positive, my daughter took me to the doctor so I had fun with the grands during the trip up and afterwards we went to wally world to pick up a few things. Great times!
My son is coming over this evening to see us before he leaves for Vegas at 6 tomorrow morning. He and Stacey are taking little missy to visit her other grandma. She is going to have a full week of spoiling in store for her... how cool is that?
Hubs and I are hoping ot be at the campground by Thursday to open the trailer and get things in gear for the season! I call it my happy place and it is.
On the down side, the lupus is still behaving badly. My fingers and feet hurt so bad today and I do not know why. I did find out my IgA is elevated as well as monocytes. My last urines had 1+ protein and wbc's present. All indicative of lupus activity. So, now I am glad to go to my happy place so I can relax and hopefully destress and get this body back in line again.
Hope everyone is well today and I send gentle hugs to one and all.
On the plus side, he told me to call my neurologist to discuss my dosage of the neurontin. The reason I even discussed it with him is that when I got into bed last night, I fell out again. I fell onto the floor next to the bed. Normally, there is nothing on the floor. However, since we are getting ready to go to the campground, I have boxes stacked and so when I fell, I fell into boxes from my shoulders down. I hit my right leg on a box and it caused a leg cramp on the upper right leg as I was laying on top of these boxes. Poor hubs, not only did I wake him up when I fell, now I was screeching because I have this leg cramp! I was trying to stretch my leg out up into the air and hubs was trying to get me up off the floor. It was a comedy of errors.
So, in retrospect, today was a normal visit to the rheumy, and not so normal in that I am bruised from the fall last night.
In the positive, my daughter took me to the doctor so I had fun with the grands during the trip up and afterwards we went to wally world to pick up a few things. Great times!
My son is coming over this evening to see us before he leaves for Vegas at 6 tomorrow morning. He and Stacey are taking little missy to visit her other grandma. She is going to have a full week of spoiling in store for her... how cool is that?
Hubs and I are hoping ot be at the campground by Thursday to open the trailer and get things in gear for the season! I call it my happy place and it is.
On the down side, the lupus is still behaving badly. My fingers and feet hurt so bad today and I do not know why. I did find out my IgA is elevated as well as monocytes. My last urines had 1+ protein and wbc's present. All indicative of lupus activity. So, now I am glad to go to my happy place so I can relax and hopefully destress and get this body back in line again.
Hope everyone is well today and I send gentle hugs to one and all.
Sunday, March 28, 2010
Letter to Normal People
Letter to normal people
I am writing this so that maybe others will understand that even if I look fine, I am not. I found this on the web and would like to share it in the hope that I can educate others about lupus. I am not looking for sympathy. I am not lazy. I am not crazy. I am sick. Whether you choose to believe me or not, it is a fact and I cannot control it. It is sad that so many others will judge me because I do not have an “obvious” disability. So, int he interest of education, please read this letter below that was written by a fellow lupus survivor…
Lupus is one of America’s least recognized major diseases. Nearly 1.5 million Americans have lupus. In fact, more Americans have lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia, and cystic fibrosis combined, making it one of this country’s most prevalent medical problems. However, while lupus is widespread, awareness and accurate knowledge about it is UNKNOWN to many!
Letter to “Normals”
Having LUPUS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about LUPUS and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand...... These are the things that I would like you to understand about me before you judge me....
- Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
-Please understand the difference between “happy” and “healthy” .When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
-Similarly, please understand that many of my symptoms aren’t always visible to people who don’t know me well. So if you see me and I look well, this doesn’t mean I’m not in pain, or exhausted or too shaky to write or sometimes even move, or haven’t lost sensation, or am not having heart problems etc. Please don’t say, “ Well you look alright!” especially if I’ve just told you I feel ill/have been very ill. I can look ok and be very ill. Telling me I look ok not only won’t help me feel better but will make me feel you are casting doubt on the fact I feel so bad. Feeling sick is hard enough without having to continually battle to make people believe you are.
-Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I manage to stand up for ten minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.
-Please repeat the above paragraph substituting “sitting”, “walking”, “thinking”, “being sociable” and so on.... it applies to everything. That’s what LUPUS does to you.
-Please understand that LUPUS is variable. It’s quite possible (for me, its common) that one day I am able to go to work, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying “But you did it before!” if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
-Please understand that I am not lazy or trying to get out of doing something either. It is the days I feel good that are few and the days I feel bad which are many. I would love to do all the things I used to do, but for me, it is not possible most of the time.
-Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct....if I was capable of doing these things , don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.
Another statement that hurts is, “You just need to push yourself more, exercise harder...” Obviously LUPUS deals directly with the immune system, and because our immune systems don’t work the way yours do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, LUPUS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it can’t be put off of forgotten just because I’m out for the day (or whatever). LUPUS does not forgive. It can pay me back by hurting and pain for days afterward.
-If you want to suggest a cure to me, don’t .It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with LUPUS then we’d know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with LUPUS, if something worked we would know.
-If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor. In may ways I depend on you....people who are not sick…
I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you’re my link to the outside world...if you don’t come to visit me then I might not get to you . …and, as much as it’s possible, I need you to understand me.
Please understand me.
I am writing this so that maybe others will understand that even if I look fine, I am not. I found this on the web and would like to share it in the hope that I can educate others about lupus. I am not looking for sympathy. I am not lazy. I am not crazy. I am sick. Whether you choose to believe me or not, it is a fact and I cannot control it. It is sad that so many others will judge me because I do not have an “obvious” disability. So, int he interest of education, please read this letter below that was written by a fellow lupus survivor…
Lupus is one of America’s least recognized major diseases. Nearly 1.5 million Americans have lupus. In fact, more Americans have lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia, and cystic fibrosis combined, making it one of this country’s most prevalent medical problems. However, while lupus is widespread, awareness and accurate knowledge about it is UNKNOWN to many!
Letter to “Normals”
Having LUPUS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about LUPUS and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand...... These are the things that I would like you to understand about me before you judge me....
- Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
-Please understand the difference between “happy” and “healthy” .When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
-Similarly, please understand that many of my symptoms aren’t always visible to people who don’t know me well. So if you see me and I look well, this doesn’t mean I’m not in pain, or exhausted or too shaky to write or sometimes even move, or haven’t lost sensation, or am not having heart problems etc. Please don’t say, “ Well you look alright!” especially if I’ve just told you I feel ill/have been very ill. I can look ok and be very ill. Telling me I look ok not only won’t help me feel better but will make me feel you are casting doubt on the fact I feel so bad. Feeling sick is hard enough without having to continually battle to make people believe you are.
-Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I manage to stand up for ten minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.
-Please repeat the above paragraph substituting “sitting”, “walking”, “thinking”, “being sociable” and so on.... it applies to everything. That’s what LUPUS does to you.
-Please understand that LUPUS is variable. It’s quite possible (for me, its common) that one day I am able to go to work, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying “But you did it before!” if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
-Please understand that I am not lazy or trying to get out of doing something either. It is the days I feel good that are few and the days I feel bad which are many. I would love to do all the things I used to do, but for me, it is not possible most of the time.
-Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct....if I was capable of doing these things , don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.
Another statement that hurts is, “You just need to push yourself more, exercise harder...” Obviously LUPUS deals directly with the immune system, and because our immune systems don’t work the way yours do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, LUPUS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it can’t be put off of forgotten just because I’m out for the day (or whatever). LUPUS does not forgive. It can pay me back by hurting and pain for days afterward.
-If you want to suggest a cure to me, don’t .It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with LUPUS then we’d know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with LUPUS, if something worked we would know.
-If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor. In may ways I depend on you....people who are not sick…
I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you’re my link to the outside world...if you don’t come to visit me then I might not get to you . …and, as much as it’s possible, I need you to understand me.
Please understand me.
Pain pain and more pain
Ok, I was put on neurontin to help with pain in my feet and hands. The first dosage is one capsule every night for a week. It made me so sleepy that it was hard to adjust to it. That being said, the pain has subsided some but not all the way. I think it would help if it were to finally get warmer and quit snowing/raining/cool weather. Unfortunately it is not helping me at all.
Now, my hands have been hurting pretty badly. It is my hope that this week, when I start the two doses of neurontin, it will begin to alleviate the pain more. I tell you, with all I have been doing lately, I am paying the price.
We will begin camping on the first of April so hopefully, once I am at "my happy place" things will improve. I need to minimize the stress and relax so my body can improve.
This is kind of post that really rambles and for that I am sorry. I truly do not know who all reads this. It is somewhat disjointed in the randomness of the thoughts but I am having issues with this as well.
Thanks for all the well wishes!
Now, my hands have been hurting pretty badly. It is my hope that this week, when I start the two doses of neurontin, it will begin to alleviate the pain more. I tell you, with all I have been doing lately, I am paying the price.
We will begin camping on the first of April so hopefully, once I am at "my happy place" things will improve. I need to minimize the stress and relax so my body can improve.
This is kind of post that really rambles and for that I am sorry. I truly do not know who all reads this. It is somewhat disjointed in the randomness of the thoughts but I am having issues with this as well.
Thanks for all the well wishes!
Rules of engagement
Welcome to you all...
I have been quiet since moving my blog over here, but I hope that whomever reads this will be accepting of the fact that when someone has a chronic illness, they need a place to vent their feelings and frustrations, free of guilt and judgment. So, in the interest of setting the groundowrk for this blog, please note that there are a few guidleines...
1. No judgment zone
2. No guilt zone
3. No drama zone
4. Loving comments gladly accepted
5. Fellow folks with chronic diseases welcome to vent too.
Thanks for all the love sent my way in the process of miving this from facebook.
Jen
I have been quiet since moving my blog over here, but I hope that whomever reads this will be accepting of the fact that when someone has a chronic illness, they need a place to vent their feelings and frustrations, free of guilt and judgment. So, in the interest of setting the groundowrk for this blog, please note that there are a few guidleines...
1. No judgment zone
2. No guilt zone
3. No drama zone
4. Loving comments gladly accepted
5. Fellow folks with chronic diseases welcome to vent too.
Thanks for all the love sent my way in the process of miving this from facebook.
Jen
Thursday, March 18, 2010
Welcome!
I just wnated to say welcome to all my friends who are coming over from facebook! I think this will suit my needs better anyway, since many people are offended by the chronic complaints of a chronically ill person.
In this forum, I can say what I want and do not have to sugar coat it or try to spin it in a more friendly way. So, in an attempt to be honest about the daily struggles of dealing with a chronic disease like lupus, I am hoping to help all of us to be able to vent freely and feel accepted.
Thanks for all your support and loving acceptance!
Jen
In this forum, I can say what I want and do not have to sugar coat it or try to spin it in a more friendly way. So, in an attempt to be honest about the daily struggles of dealing with a chronic disease like lupus, I am hoping to help all of us to be able to vent freely and feel accepted.
Thanks for all your support and loving acceptance!
Jen
Letter to normal people
I am writing this so that maybe others will understand that even if I look fine, I am not. I found this on the web and would like to share it in the hope that I can educate others about lupus. I am not looking for sympathy. I am not lazy. I am not crazy. I am sick. Whether you choose to believe me or not, it is a fact and I cannot control it. It is sad that so many others will judge me because I do not have an “obvious” disability. So, int he interest of education, please read this letter below that was written by a fellow lupus survivor…
Lupus is one of America’s least recognized major diseases. Nearly 1.5 million Americans have lupus. In fact, more Americans have lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia, and cystic fibrosis combined, making it one of this country’s most prevalent medical problems. However, while lupus is widespread, awareness and accurate knowledge about it is UNKNOWN to many!
Letter to “Normals”
Having LUPUS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about LUPUS and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand...... These are the things that I would like you to understand about me before you judge me....
- Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
-Please understand the difference between “happy” and “healthy” .When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
-Similarly, please understand that many of my symptoms aren’t always visible to people who don’t know me well. So if you see me and I look well, this doesn’t mean I’m not in pain, or exhausted or too shaky to write or sometimes even move, or haven’t lost sensation, or am not having heart problems etc. Please don’t say, “ Well you look alright!” especially if I’ve just told you I feel ill/have been very ill. I can look ok and be very ill. Telling me I look ok not only won’t help me feel better but will make me feel you are casting doubt on the fact I feel so bad. Feeling sick is hard enough without having to continually battle to make people believe you are.
-Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I manage to stand up for ten minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.
-Please repeat the above paragraph substituting “sitting”, “walking”, “thinking”, “being sociable” and so on.... it applies to everything. That’s what LUPUS does to you.
-Please understand that LUPUS is variable. It’s quite possible (for me, its common) that one day I am able to go to work, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying “But you did it before!” if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
-Please understand that I am not lazy or trying to get out of doing something either. It is the days I feel good that are few and the days I feel bad which are many. I would love to do all the things I used to do, but for me, it is not possible most of the time.
-Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct....if I was capable of doing these things , don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.
Another statement that hurts is, “You just need to push yourself more, exercise harder...” Obviously LUPUS deals directly with the immune system, and because our immune systems don’t work the way yours do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, LUPUS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it can’t be put off of forgotten just because I’m out for the day (or whatever). LUPUS does not forgive. It can pay me back by hurting and pain for days afterward.
-If you want to suggest a cure to me, don’t .It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with LUPUS then we’d know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with LUPUS, if something worked we would know.
-If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor. In may ways I depend on you....people who are not sick…
I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you’re my link to the outside world...if you don’t come to visit me then I might not get to you . …and, as much as it’s possible, I need you to understand me.
Please understand me.
Lupus is one of America’s least recognized major diseases. Nearly 1.5 million Americans have lupus. In fact, more Americans have lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia, and cystic fibrosis combined, making it one of this country’s most prevalent medical problems. However, while lupus is widespread, awareness and accurate knowledge about it is UNKNOWN to many!
Letter to “Normals”
Having LUPUS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about LUPUS and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand...... These are the things that I would like you to understand about me before you judge me....
- Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
-Please understand the difference between “happy” and “healthy” .When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
-Similarly, please understand that many of my symptoms aren’t always visible to people who don’t know me well. So if you see me and I look well, this doesn’t mean I’m not in pain, or exhausted or too shaky to write or sometimes even move, or haven’t lost sensation, or am not having heart problems etc. Please don’t say, “ Well you look alright!” especially if I’ve just told you I feel ill/have been very ill. I can look ok and be very ill. Telling me I look ok not only won’t help me feel better but will make me feel you are casting doubt on the fact I feel so bad. Feeling sick is hard enough without having to continually battle to make people believe you are.
-Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I manage to stand up for ten minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.
-Please repeat the above paragraph substituting “sitting”, “walking”, “thinking”, “being sociable” and so on.... it applies to everything. That’s what LUPUS does to you.
-Please understand that LUPUS is variable. It’s quite possible (for me, its common) that one day I am able to go to work, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying “But you did it before!” if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
-Please understand that I am not lazy or trying to get out of doing something either. It is the days I feel good that are few and the days I feel bad which are many. I would love to do all the things I used to do, but for me, it is not possible most of the time.
-Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct....if I was capable of doing these things , don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.
Another statement that hurts is, “You just need to push yourself more, exercise harder...” Obviously LUPUS deals directly with the immune system, and because our immune systems don’t work the way yours do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, LUPUS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it can’t be put off of forgotten just because I’m out for the day (or whatever). LUPUS does not forgive. It can pay me back by hurting and pain for days afterward.
-If you want to suggest a cure to me, don’t .It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with LUPUS then we’d know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with LUPUS, if something worked we would know.
-If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor. In may ways I depend on you....people who are not sick…
I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you’re my link to the outside world...if you don’t come to visit me then I might not get to you . …and, as much as it’s possible, I need you to understand me.
Please understand me.
New lupus drug Benlysta
For my fellow lupies....there is hope on the horizon....
I am part of the continuation program of clinical trial for this drug. I inject myself with 1 mg once every two weeks. It does appear to help for most of the issues, however, I still flare up. Anyhoo, wanted to pass this on. If approved, it will be the first new med for lupus in over 50 years!
Belimumab Effectively Treats Lupus Flares Over a Four-Year Period
Four-year experience of belimumab, a BLyS-specific inhibitor, in systemic lupus erythematosus patients. (2009).
American College of Rheumatology Abstracts 2069.
What is the topic?
Belimumab (also known as Benlysta™) is currently being studied in Phase III clinical trials to determine whether or not it is effective for lupus. Belimumab specifically reduces the actions of a protein called “B lymphocyte stimulator,” or BLyS. BLyS is a protein that increases the lifespan and inflammatory potential of certain immune cells called B cells, which are known to be hyperactive in lupus patients. Belimumab, which interferes with BLyS, is a human antibody. This means that it looks a lot like the antibodies that the immune system makes to fight off viruses. But in this case, belimumab targets only the protein BLyS. Because it only has one target, it is called a “monoclonal” antibody.
What did the researchers hope to learn?
This study is not reporting the results from either of the Phase III trials which are winding up now. Instead, it reports the results of a long-term follow-up study of patients who had completed the Phase II trial of belimumab, who continued to be treated for up to four years. Those who had originally been assigned to get belimumab in the Phase II study continued to get it, and those who had been getting placebo (inactive treatment) in the Phase II study were switched to belimumab, so that in this follow-up study all participants got the real treatment. The researchers wanted to find out if people on belimumab continued to do well over a long period, and whether the treatment was safe and well-tolerated over the long term.
Who was studied?
449 patients with active lupus were studied.
How was the study conducted?
Patients who had completed a Phase II, year-long, clinical trial during which they did not know if they were receiving belimumab or placebo were allowed to all receive the active treatment for a long-term study, and this report tracks the results of this longer study for up to four years.
What did the researchers find?
The researchers found no evidence of increased side effects in patients who took belimumab for up to four years, when compared to the side effects that had occurred to the original placebo group during the first year of the trial. Over the four years, patients also seemed to get fewer and fewer flares of lupus.
What were the limitations of the study?
Some of the patients who may not have been doing so well may have dropped out over the four-year study, and it would be likely that those who were benefiting the most would be staying in the study. Nevertheless, it seems evident that those who did stay in (a large subset of the original study participants) were receiving some benefit from the treatment.
What do the results mean for you?
In early 2010, the Food and Drug Administration is expected to begin considering whether it will be possible to approve belimumab for the treatment of lupus. If approved, belimumab will be the first treatment approved for lupus in over 50 years.
The results of this current study suggest that belimumab may be safe for long-term use in lupus patients, and this could provide important supportive evidence for the FDA in making their decision.
I am part of the continuation program of clinical trial for this drug. I inject myself with 1 mg once every two weeks. It does appear to help for most of the issues, however, I still flare up. Anyhoo, wanted to pass this on. If approved, it will be the first new med for lupus in over 50 years!
Belimumab Effectively Treats Lupus Flares Over a Four-Year Period
Four-year experience of belimumab, a BLyS-specific inhibitor, in systemic lupus erythematosus patients. (2009).
American College of Rheumatology Abstracts 2069.
What is the topic?
Belimumab (also known as Benlysta™) is currently being studied in Phase III clinical trials to determine whether or not it is effective for lupus. Belimumab specifically reduces the actions of a protein called “B lymphocyte stimulator,” or BLyS. BLyS is a protein that increases the lifespan and inflammatory potential of certain immune cells called B cells, which are known to be hyperactive in lupus patients. Belimumab, which interferes with BLyS, is a human antibody. This means that it looks a lot like the antibodies that the immune system makes to fight off viruses. But in this case, belimumab targets only the protein BLyS. Because it only has one target, it is called a “monoclonal” antibody.
What did the researchers hope to learn?
This study is not reporting the results from either of the Phase III trials which are winding up now. Instead, it reports the results of a long-term follow-up study of patients who had completed the Phase II trial of belimumab, who continued to be treated for up to four years. Those who had originally been assigned to get belimumab in the Phase II study continued to get it, and those who had been getting placebo (inactive treatment) in the Phase II study were switched to belimumab, so that in this follow-up study all participants got the real treatment. The researchers wanted to find out if people on belimumab continued to do well over a long period, and whether the treatment was safe and well-tolerated over the long term.
Who was studied?
449 patients with active lupus were studied.
How was the study conducted?
Patients who had completed a Phase II, year-long, clinical trial during which they did not know if they were receiving belimumab or placebo were allowed to all receive the active treatment for a long-term study, and this report tracks the results of this longer study for up to four years.
What did the researchers find?
The researchers found no evidence of increased side effects in patients who took belimumab for up to four years, when compared to the side effects that had occurred to the original placebo group during the first year of the trial. Over the four years, patients also seemed to get fewer and fewer flares of lupus.
What were the limitations of the study?
Some of the patients who may not have been doing so well may have dropped out over the four-year study, and it would be likely that those who were benefiting the most would be staying in the study. Nevertheless, it seems evident that those who did stay in (a large subset of the original study participants) were receiving some benefit from the treatment.
What do the results mean for you?
In early 2010, the Food and Drug Administration is expected to begin considering whether it will be possible to approve belimumab for the treatment of lupus. If approved, belimumab will be the first treatment approved for lupus in over 50 years.
The results of this current study suggest that belimumab may be safe for long-term use in lupus patients, and this could provide important supportive evidence for the FDA in making their decision.
More from old blog various topics
reuben sliders from RR Share
10:29pm yesterday
St Patty’s-Style Reuben Sliders
Serves 12 sliders, 3 per person
Tags: brunch dinner lunch burgers “sammies,” wraps and subs cheese rice, grains and breads beef vegetables potatoes sauté griddle food processor or blender Submitted by
Rachael Ray
on 03/17/10If you don’t have time to cook a corned beef brisket and potatoes, try this slider that’s sure to satisfy lovers of the traditional St. Patrick’s Day meal.
AdvertisementIngredients•1 pound ground beef
•Salt and pepper
•3 tablespoons grated onion from 1/2 small onion
•1/2 pound corned beef, chopped
•3 tablespoons grainy mustard
•Extra virgin olive oil (EVOO) or vegetable oil, for drizzling
•4 baby Yukon gold potatoes, cut into 1/4-inch dice
•1 pound sack sauerkraut, rinsed and drained
•1/2 cup lager beer
•12 slices Swiss cheese
•12 slider rolls or party-size rye bread slices, toasted
•2 tablespoons dill relish
•3 tablespoons ketchup
•1 teaspoon Worcestershire sauce
•1/2 cup sour cream
PreparationIn a mixing bowl, combine beef, salt, pepper and grated onion. Place corned beef in a food processor and pulse to grind it up. Add to the beef along with mustard and mix well with your hand. Form 12 small 3-inch patties and coat them lightly with a drizzle of oil.
Meanwhile, heat a liberal drizzle of EVOO or vegetable oil in a medium skillet over medium to medium-high heat. Add potatoes, season with salt and pepper and cook 5-6 minutes. Add sauerkraut and stir. Add beer and simmer 5 minutes more.
Heat a large skillet or griddle pan over medium-high heat. Cook patties 3 minutes on each side. Cut or fold the Swiss cheese slices to fit the burgers and melt over burgers under a tin foil tent.
Pile patties on slider rolls and top with the potato-kraut. In a small bowl, stir together the relish, ketchup, Worcestershire and sour cream. Dollop a generous spoonful of sauce on each slider then set the bun tops or toasts on top.
My new journey Share
11:24pm March 13th, 2010
Mood: melancholy
Well, here I am, thinking lupus isn’t going to get me and then wham! A new thing rears its ugly head from this disease! So, in an attempt to understand the new twists and turns, I have elected to read and explore instead. Knowledge is power they say, so I am equipping myself with knowledge of the whys, and wherefores to neuropathy.
The good news is having taken nursing in college, I do understand the medical terminology in most of the literature, and when I do not understand, I look it up. This has been a turn I was unprepared for. However, that being said, I intend to let the wolf (lupus) know that it is not going to win!
I do not need pity, or sympathy in this journey. What I need is friends who genuinely care, and are willing to listen when I need to rant. I need to know that friends can be called upon if needed to help. The best help can be just a nice comment, or making me laugh! Trust me, I am not hard to please. Little things are the best medicine for me.
I know some people are at a loss when it comes to people who are sick. This is human nature for some and I hope you are not going to judge me for the illness that rules my life. I want to make it clear that this illness is not imaginary or all in my head. It is real. It is difficult to live with. Imagine flu like symptoms of aching and fever and pain. When you are sick, you feel bad, but you get better! Imagine now feeling that way most days, and looking fine on the outside. It is hard.
Anyhoo, this is a rant of mine. Sorry but it helps me to deal with this disease by getting it out in the open. It is like the elephant in the room, everywhere I go, it is there. So, I talk about it in the hopes that it will alleviate some of my feelings of inadequacies brought about by being sick and tired all the time.
I have had to learn to slow down, and accept that I cannot do all the things I wnat to. I have had to learn to llisten to my body. Sometimes I can run and play and be almost normal! Those are the good days! Rejoice when that happens, because it is not often anymore.
I look fine on the outside but the war is internal and it affects so much I love to do. I can park in the handicapped parking space, and if I use it, then I need to do it that day. This winter has been hard for me because I have been housebound for most of it. Not necessarily by choice but due to pain and inflammation from the cold. When I have ventured out, it has been great to see people and enjoy the simplest things like grocery shopping. Rejoice again!
Next time you think “oh there she goes again, talking about lupus” remember that you have the option to ignore it, unfortunately, I do not. So, please do not judge me. Just be my friend and understand that there are good days and bad days and it doesn’t take much to let me know I am loved by those who mean the world to me.
Thanks for letting me vent! Love and blessings to all!
More lupus neuropathy information Share
11:09pm March 13th, 2010
Peripheral neuropathy
MedlinePlus Topics
Peripheral Nerve Disorders
Urinary casts Peripheral neuropathy is a problem with the nerves that carry information to and from the brain and spinal cord. This can produce pain, loss of sensation, and an inability to control muscles.
“Peripheral” means nerves further out from the center of the body, distant from the brain and spinal cord.
“Neuro” means nerves.
“Pathy” means abnormal.
Causes
One set of peripheral nerves relay information from your central nervous system (brain and spinal cord) to muscles and other organs. A second set relays information from your skin, joints, and other organs back to your brain.
Peripheral neuropathy occurs when these nerves don’t work properly, resulting in pain, loss of sensation, inability to control muscles, and other possible problems.
In some cases, the failure of nerves that control blood vessels, intestines, and other organs results in abnormal blood pressure, digestion problems, and loss of other basic body processes. Peripheral neuropathy may involve damage to a single nerve or nerve group (mononeuropathy) or may affect multiple nerves (polyneuropathy).
There are numerous reasons for nerves to malfunction. In many cases, no cause can be identified. Damage to nerves can result from:
Diseases that run in families (hereditary disorders) such as:
Charcot-Marie-Tooth disease
Friedreich’s ataxia
Diseases that affect the whole body (systemic or metabolic disorders) such as:
Diabetes (diabetic neuropathy)
Dietary deficiencies (especially vitamin B-12)
Excessive alcohol use (alcoholic neuropathy)
Uremia (from kidney failure)
Cancer
Infections or inflammation, including:
AIDS
Hepatitis
Colorado tick fever
Diphtheria
Guillain-Barre syndrome
HIV infection without development of AIDS
Leprosy
Lyme disease
Polyarteritis nodosa
Rheumatoid arthritis
Sarcoidosis
Sjogren syndrome
Syphilis
Systemic lupus erythematosus
Amyloidosis
Exposure to poisonous substances such as:
Sniffing glue or other toxic compounds
Nitrous oxide
Industrial chemicals—especially solvents
Heavy metals (lead, arsenic, mercury, etc.)
Neuropathy secondary to drugs (many drugs, including some used for chemotherapy, can cause neuropathy)
Miscellaneous causes
Compression of a nerve by casts, splints, braces, crutches, or other devices
Decreased oxygen and blood flow (ischemia)
Direct injury of the nerve either by hitting the nerve
Prolonged exposure to cold temperature
Prolonged pressure on the nerve (such as a long surgery or lengthy illness)
Peripheral neuropathy is very common. Because there are numerous types and causes of neuropathy and scientists don’t always agree on the same definition of neuropathy, the exact incidence cannot be determined precisely.
Some people have a hereditary predisposition for neuropathy.
Symptoms
The symptoms depend on which type of nerve is affected. The three main types of nerves are:
Those that carry sensations (sensory)
Those that control muscles (motor)
Those that carry information to organs and glands (autonomic)
Neuropathy can affect any one or a combination of all three types of nerves. Symptoms also depend on whether the condition affects the whole body or just one nerve (as from an injury).
Longer nerves are more easily injured than shorter ones, so it is common for you to have worst symptoms in the legs and feet than in the hands and arms.
SENSATION CHANGES
Damage to sensory fibers results in changes in sensation, burning sensations, nerve pain, tingling or numbness, or an inability to determine joint position, which causes incoordination.
For many neuropathies, sensation changes often begin in the feet and progress toward the center of the body with involvement of other areas as the condition worsens. Diabetes is a common cause for sensory neuropathy.
MOVEMENT DIFFICULTIES
Damage to the motor fibers interferes with muscle control and can cause weakness, loss of muscle bulk, and loss of dexterity. Sometimes, cramps are a sign of motor nerve involvement.
Other muscle-related symptoms include:
Difficulty breathing or swallowing
Difficulty or inability to move a part of the body (paralysis)
Falling (from legs buckling or tripping over toes)
Lack of dexterity (such as being unable to button a shirt)
Lack of muscle control
Loss of muscle tissue (muscle atrophy)
Muscle twitching or cramping
AUTONOMIC SYMPTOMS
The autonomic nerves control involuntary or semi-voluntary functions, such as control of internal organs and blood pressure. Damage to autonomic nerves can cause:
Abdominal bloating
Blurred vision
Constipation
Decreased ability to sweat
Diarrhea
Difficulty beginning to urinate (urinary hesitancy)
Dizziness that occurs when standing up or fainting associated with a fall in blood pressure
Feeling full after eating a small amount (early satiety)
Feeling of incomplete bladder emptying
Heat intolerance with exertion
Male impotence
Nausea or vomiting after meals
Unintentional weight loss (more than 5% of body weight)
Urinary incontinence
Exams and Tests
A detailed history will be needed to determine the cause of the neuropathy. A neurological exam may reveal problems with movement, sensation, or organ function. Changes in reflexes and muscle bulk may also be present.
Blood tests may be done to screen for medical conditions such as diabetes and vitamin deficiencies.
Tests that reveal neuropathy may include:
EMG (a recording of electrical activity in muscles)
Nerve conduction tests
Nerve biopsy
Tests for neuropathy are guided by the suspected cause of the disorder, as suggested by the history, symptoms, and pattern of symptom development. They may include various blood tests, x-rays, scans, or other tests and procedures.
Treatment
Treatmet involves:
Identifying and treating any underlying medical problem (such as diabetes) or removing the cause (such as alcohol)
Controlling symptoms
Curing the disorder, if possible
Helping the patient gain maximum independence and self-care ability
Physical therapy, occupational therapy, and orthopedic interventions may be recommended. For example, exercises and retraining may be used to increase muscle strength and control. Wheelchairs, braces, and splints may improve mobility or the ability to use an affected arm or leg.
Safety is an important consideration for people with neuropathy. Lack of muscle control and reduced sensation increase the risk of falls and other injuries. The person may not notice a potential source of injury because he or she can’t feel it. For example, one may not notice if water in a bathtub is too hot. For this reason, people with decreased sensation should check their feet or other affected areas frequently for bruises, open skin areas, or other injuries, which may go unnoticed and become severely infected. Often, a podiatrist can determine if special orthotic devices are needed.
Safety measures for people experiencing difficulty with movement may include:
Installing railings
Removing obstacles on floors such as loose rugs
Safety measures for people having difficulty with sensation include:
Adequate lighting (including night lights)
Testing water temperature before bathing
Use of protective shoes (no open toes, no high heels)
Shoes should be checked often for grit or rough spots that may cause injury to the feet.
Persons with neuropathy (especially those with polyneuropathy or mononeuropathy multiplex) are prone to new nerve injury at pressure points such as knees and elbows. They should avoid prolonged pressure on these areas from leaning on the elbows, crossing the knees, or assuming similar positions.
Prescription pain medications may be needed to control nerve pain. Anticonvulsants (phenytoin, carbamazepine, gabapentin, and pregabalin), tricyclic antidepressants (duloxetine), or other medications may be used to reduce the stabbing pains. Use the lowest dose possible to avoid side effects.
Adjusting position, using frames to keep bedclothes off tender body parts, or other measures may also be helpful to reduce pain.
The symptoms of autonomic changes may be difficult to treat or respond poorly to treatment.
Use of elastic stockings and sleeping with the head elevated may help treat low blood pressure that occurs when standing up (postural hypotension). Fludrocortisone or similar medications may also be helpful.
Medications that increase gastric motility (such as metoclopramide), eating small frequent meals, sleeping with the head elevated, or other measures may help.
Manual expression of urine (pressing over the bladder with the hands), intermittent catheterization, or medications such as bethanechol may be necessary for those with bladder dysfunction.
Impotence, diarrhea, constipation or other symptoms are treated as appropriate.
Support Groups
Additional information can be obtained from the Neuropathy Association - http://www.neuropathy.org
Outlook (Prognosis)
The outcome greatly depends on the cause of the neuropathy. In cases where a medical condition can be identified and treated, the outlook may be excellent. However, in severe neuropathy, nerve damage can be permanent, even if the cause is treated appropriately.
For most hereditary neuropathies, there is no cure. Some of these conditions are harmless, while others progress more rapidly and may lead to permanent, severe complications.
Possible Complications
The inability to feel or notice injuries can lead to infection or structural damage. Changes include poor healing, loss of tissue mass, tissue erosions, scarring, and deformity. Other complications include:
Decreased self esteem
Difficulty breathing
Difficulty swallowing
Irregular heart rhythms ( arrhythmias)
Need for amputation
Partial or complete loss of movement or control of movement
Partial or complete loss of sensation
Relationship problems related to impotence
Recurrent or unnoticed injury to any part of the body
When to Contact a Medical Professional
Call your health care provider if symptoms of peripheral neuropathy are present. In all cases, early diagnosis and treatment increases the possibility that symptoms can be controlled.
Nerve pain, such as that caused by peripheral neuropathy, can be difficult to control. If pain is severe, contact a pain specialist may be able to suggest different approaches.
Emergency symptoms include irregular or rapid heartbeats, difficulty breathing, difficulty swallowing, and fainting.
Prevention
If a prolonged procedure or immobility is expected, appropriate measures (such as padding vulnerable areas) can be taken beforehand to reduce the risk of nerve problems.
Persons with a hereditary predisposition for neuropathy need to be especially careful to limit alcohol and manage other medical problems closely.
All people can reduce the risk of neuropathy by following a balanced diet, drinking alcohol in moderation, and maintaining good control of diabetes and other medical problems, if present.
Alternative Names
Peripheral neuritis; Neuropathy - peripheral; Neuritis - peripheral
References
Shy ME. Peripheral neuropathies. In: Goldman L, Ausiello D, eds. Cecil Medicine. 23rd ed. Philadelphia, Pa: Saunders Elsevier; 2007:chap 446.
Update Date: 9/11/2008
Updated by: Sean O. Stitham, MD, private practice in Internal Medicine, Seattle, Washington; and Daniel B. Hoch, PhD, MD, Assistant Professor of Neurology, Harvard Medical School, Department of Neurology, Massachusetts General Hospital. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
Lupus Neuropathy articles
11:06pm March 13th, 2010
Mood: melancholy
Lupus Neuropathy
from University of Chicago website
Systemic Lupus Erythematosus (Lupus)
Lupus is a broad term for several autoimmune disorders that weaken the body’s immune system by producing antibodies that attack healthy cells, tissues and organs. The name “lupus” usually refers to the most common form, systemic lupus erythematosus. This disease is called systemic because it can affect many parts of the body. It is characterized by inflammation and damage to different tissues and organs with many symptoms including fatigue and fever, swollen or painfully inflamed joints, and skin rashes. Lupus may affect the kidneys, heart, lungs, blood and blood vessels, central nervous system and peripheral nerves. It may suddenly flare up and then retreat into remission.
The cause of lupus is unknown, but it is believed that genetic, environmental and other factors may trigger the disease. Research indicates that lupus may run in families, but to date it has not been linked with a specific gene. It is thought that a combination of several genes may increase the chance of developing lupus. It is not possible to transmit lupus from person to person.
The Centers for Disease Control and Prevention estimate that 1.4 million Americans—mostly women—have lupus. Nevertheless, lupus is difficult to accurately diagnose. There is no definitive test for lupus and symptoms may change over time.
While there is no cure for lupus, the symptoms can be managed with medication. Research currently underway is focused on providing a greater understanding of the disease and finding ways to maintain remission. It is hoped that research will ultimately lead to a cure.
SYMPTOMS AND SIGNS
(Not all symptoms and signs may be present.)
Anemia
Fatigue
Fever
Hair loss
Headaches, seizures
Kidney problems
Loss of appetite, nausea, diarrhea
Rash across the face and nose
Raynaud’s phenomenon (pale or purple fingers or toes from exposure to cold temperatures)
Skin ulcers inside mouth and on the tongue
Sensitivity to sun
Serositis (inflamed linings of organs such as the heart and lungs causing chest pain and difficulty breathing)
Swollen joints
Swollen glands
Pain, numbness and tingling in hands or feet
EVALUATION AND TESTS
(Not all evaluation and tests may be necessary.)
Neurological exam
Electromyography
Nerve conduction velocity test
Antinuclear antibody (ANA) test
Blood tests (for presence of antinuclear [ANA] antibody and for sedimentation rate determination)
Urine test
Biopsy of skin or kidney
TREATMENT AND THERAPY
(Not all treatments and therapies may be indicated.)
Treatment focuses on relieving pain by reducing inflammation, slowing joint and bone damage and improving the ability to function with the disease.
Rest and exercise programs
NSAIDs (aspirin, ibuprofen and Aleve®) to reduce joint inflammation and pain
COX-2 inhibitors (Celebrex®) for pain and inflammation
Antimalarial medication (hydroxychloroquine [Plaquenil®]) to suppress immune response
Corticosteroids (prednisone [Deltasone®], hydrocortisone, methlyprednisolone [Medrol®], dexamethasone [Decadron®, Hexadrol®]) to suppress inflammation
Immunosuppresive medications (azathioprine [Imuran®], cyclophosphamide [Cytoxan®, Neosar®] to slow or reduce immune response
Take safety measures to compensate for loss of sensation
0 comments | Add a comment Latest doc appointment Share
10:48am March 12th, 2010
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Ok, went to neurologist, thinks it is definitely lupus neuropathy… feet… put me on neurontin and said to continue darvocets for pain as needed… well now, another thing on the lengthy list of junk my body is doing....
so, now I have to have an emg and wear shoes in the summer… this is cruel and unusual punishment...lol.
Just crabbing a little here… anyone else take neurontin? Any other lupies with neuropathy out there? Doc said lupus neuropathy has different manifestations compared to diabetic neuropathy. Any help or suggestions welcome…
Blessings and thanks
Jen
sunshine
12:51am March 9th, 2010
Well, another day, another day… I woke up with the pain somewhat on the lowest setting and after breakfast, I got to work on dishes, laundry and general housework. I have felt so bad that I had not done a single thing in a week!
The sun was outside shining brightly and so I went outside and soaked up some of it. It definitely helped my mood, and it made my bones feel better. In the meantime, I did get a lot accomplished so I felt productive as well.
As my strength waned, I relaxed and enjoyed the rest of the evening by chatting with friends and creating a new fb page. It is for the campers of Cross’s Campground and I had so much fun doing it.
What an amazing day after the roller coaster ride of the last few weeks. Now, after bedtime, I sit here in pain yet again. I see my neurologist for the first time on Friday, and it is my hope that he will be able to develop a game plan to attack these demons in my body and let me get the rest I need and live a better life.
I am also looking forward to the camping season this year. It is amazing how fresh air and the outdoors makes me feel so much better and happier. With our grands growing so fast, we want to enjoy all the time we can with them and make many happy memories for them to carry into their adult lives, in effect, giving them the foundation of love through the generations and a legacy they can pass on to their children as well.
Enough rambling for now, just needed to let out a few thoughts and hope that sleep will not elude me yet again. Blessings!
0 comments | Add a comment Is it over yet? Share
2:04am March 8th, 2010
Mood: hopeful
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For most people, winter is a time of snow, happiness and the occasisional drving test due to the snow. The utility bills go up as the temperature goes down. The days are shorter and we stay indoors more. Most of us can identify with all these things.
However, as most of you know, those of us with lupus are not most people. So, in an effort to try to explain the way we feel, I thought this blog may help those who are “normal” to understand what winter means to me.
I am just one person with lupus. Winter is my enemy. The cold weather turns my fingers and toes white and blue and painful. It is called Raynauds, yet one more autoimune to add to my list.
I develop severe dry eyes that cause me to have corneal erosions that require surgery. My skin crawls all itchy like little bugs are on it. My scalp gets inundated with little sores that itch and scab over.
I sometimes get sores in my mouth and nose that are also painful. My joints hurt so bad that sometimes I sit and cry because the pain is overwhelming my body.
I am experiencing neuropathy in my feet now and have to see another specialist, a neurologist. Sleep eludes me when I need it the most. I plan my activities and have to cancel tham because I am too exhausted to do them.
I cannot attend my Christian meetings because it is too cold/too snowy/too painful/. Thankfully, I can attend by phone, which can be my lifeline to my brothers and sisters.
The medications I take cause me to gain weight, and develop osteoporosis, among other things. I have to see an opthalmologist because of one of my medications (an anti-malarial medication). You see, one of the side effects is you can lose your color vision and even go blind.
I am forgetful, and if I do not put something on my calendar, it is not done. That includes babysitting and other family pursuits. So, if I forget you, please be patient, it is not on purpose. I just didn’t put it on the calendar. If you want me to attend something, make sure I put it on my calendar too.
If you want to come visit me, please call first. Odds are I am either in bed, or resting. On the off chance I actually got out and about, be thankful, because it is rare in winter. In the same manner, when I do go out, it takes most of my energy and I am forced to rest my body afterwards.
If you think this is depressing to read, imagine living this every day. The good days definitely make up for the bad ones, but winter is hard on me for sure. As it draws to a close, I would like to say that I love each and every one of you who have called, visited, texted and emailed me this winter. You have helped make it more bearable for me and for that, I am blessed.
The blessings I recieve from all of you can be something so small, you do not even know you did it, but to me it is huge! Thanks for all you do, and I hope in some small way, you can see that I am not and do not want to gripe constantly, however, it does help to vent when I am at wits end and I tend to do that here, online. Please overlook it if it bothers you.
Once again, thanks for just being here and being my friends. I love you all!
Jen
0 comments | Add a comment Common Symptoms of Lupus from LFA Share
7:58pm January 18th, 2010
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Common Symptoms of Lupus
To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.
1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4. Oral ulcers – sores appearing in the mouth
5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
7. Kidney disorder – persistent protein or cellular casts in the urine
8. Neurological disorder – seizures or psychosis
9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
10. Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
11. Abnormal antinuclear antibody (ANA)
People with lupus also may experience symptoms that do not appear among the ACR criteria:
fever (over 100° F)
extreme fatigue
hair loss
fingers turning white and/or blue when cold (Raynaud’s phenomenon)
0 comments | Add a comment How is Lupus Diagnosed Share
7:55pm January 18th, 2010
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How is Lupus Diagnosed
In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from foreign invaders. When you have lupus, your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues, so autoantibodies (auto means self and anti means against: “against self“) are made that damage and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
What Is My Doctor Looking For?
A doctor who is considering the possibility of lupus will look for signs of inflammation. The signs of inflammation are pain, heat, redness, swelling, and loss of function at a particular place in the body. Inflammation can occur on the inside of your body (your kidneys or heart, for example), on the outside (your skin), or both.
However, there are many challenges in confirming that a person has lupus and not some other disease. Lupus is known as “the great imitator,” because its symptoms mimic many other illnesses. Also, lupus symptoms can be unclear, can come and go, and can change. Therefore, a lupus diagnosis is made by a careful review of:
your current symptoms
your laboratory test results
your medical history
the medical history of your close family members (grandparents, parents, brothers and sisters, aunts, uncles, cousins)
All of this information may be necessary for a doctor to make a diagnosis of lupus because, for a number of reasons, laboratory tests alone cannot give a definite “yes” or “no” answer.
No single laboratory test can determine whether a person has lupus.
Test results that suggest lupus can be due to other illnesses, or can even be seen in healthy people.
A test result may be positive one time and negative another time.
Different laboratories may produce different test results.
Frequently Asked Questions
Is there a test for systemic lupus?
There is not a single diagnostic test for systemic lupus. A variety of laboratory tests are used to detect physical changes or conditions in your body that can occur with lupus. Each test result adds more information to the picture your doctor is forming of your illness.
What kind of doctor can diagnose systemic lupus?
If multiple criteria are present simultaneously, the diagnosis may be made by any physician (Family Practitioner, Internist, or Pediatrician). If however, as is often the case, symptoms develop gradually over time, the diagnosis may not be as obvious and consultation with a rheumatologist may be needed.
Where is the BEST place to go for diagnosis and treatment of lupus?
There is no one single recognized center of excellence for the treatment and diagnosis of lupus in the United States today. The Lupus Foundation of America has no mechanism by which it can rate either hospitals or physicians. The general recommendation is to find a physician that is affiliated with a medical school—a university hospital for example. These health care institutions may have faculty on staff who are involved in lupus research, and are generally the most up-to-date on the latest advances in diagnosis and treatment of lupus. These are generally regarded as very good places to go for the diagnosis and treatment of lupus. Certainly the health care institutions with established reputations fit this description.
0 comments | Add a comment Tests for lupus from LFA Share
7:53pm January 18th, 2010
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Laboratory Tests for Lupus
Many different laboratory tests are used to detect physical changes or conditions in your body that can occur with lupus. Each test result adds more information to the picture your doctor is forming of your illness.
Routine Blood Tests
Usually your doctor will first request a complete blood count (CBC). Your blood is made up of red blood cells, white blood cells, platelets, and serum. The complete blood count measures the levels of each. In cases of lupus, these blood tests may reveal low numbers.
Red blood cells carry oxygen to all parts of the body.
White blood cells (lymphocytes and others) help the immune system to protect the body against foreign invaders. The white blood cells called T cells and macrophages are directly involved in this protection. Other white blood cells called B cells are indirectly involved, by producing antibodies to the foreign substances.
Platelets form in bone marrow; they go to the site of a wound to begin the blood-clotting process.
Blood serum is the fluid portion of whole blood from which certain substances in the clotting of blood have been removed.
Urine Tests
Because your body’s waste is processed by the kidneys, testing a sample of urine (called a ‘spot urine’ test) can reveal any problems with the way your kidneys are functioning. Lupus can attack the kidneys without any warning signs, so these tests are very important. The most common urine tests look for cell casts (bits of cells that normally would be removed when your blood is filtered through your kidneys), and proteinuria (protein being spilled into your body because your kidneys are not filtering the waste properly). A collection of your urine over a 24-hour period can also give important information.
Antibodies
The antibodies your body makes against its own normal cells and tissues play a large role in lupus. Many of these antibodies are found in a panel, or group, of tests that are ordered at the same time. The test you will hear most about is called the ANA test. This is not a specific test for lupus, however.
Antinuclear antibodies (ANA) are antibodies that connect, or bind, to the nucleus—the “command center“—of the cell. This process damages, and can destroy, the cells. The ANA blood test is a sensitive test for lupus, since these antibodies are found in 97 percent of people with the disease. When three or more typical features of lupus are present—such as involvement of the skin, joints, kidneys, lungs, heart, blood, or nervous system—a positive ANA test will confirm a diagnosis of lupus. However, a positive ANA test result does not always mean you have lupus. The ANA can be positive in people with other illnesses, or positive in people with no illness. The ANA can also change from positive to negative, or negative to positive, in the same person. Still, lupus is usually the diagnosis when these antinuclear antibodies are found in your blood.
In addition to the ANA, doctors trying to diagnose lupus often look for the following specific antibodies.
Antibodies to double-stranded DNA (anti-dsDNA) are antibodies that attack the DNA—the genetic material—inside the cell nucleus. Anti-dsDNA antibodies are found in half of the people with lupus, but lupus can still be present even if these antibodies are not detected.
Antibodies to histone—a protein that surrounds the DNA molecule—are sometimes found in people with systemic lupus but are more often seen in people with drug-induced lupus. This form of lupus is caused by certain medications, and usually goes away after the medication is stopped.
Antibodies to phospholipids (aPLs) can cause narrowing of blood vessels, leading to blood clots in the legs or lungs, stroke, heart attack, or miscarriage. The most commonly measured aPLs are lupus anticoagulant, anticardiolipin antibody, and anti-beta2 glycoprotein I. Nearly 30 percent of people with lupus will test positive for antiphospholipid antibodies. Phospholipids found in lupus are also found in syphilis, and the blood test cannot always tell the difference between the two diseases. A positive result to a syphilis test does not mean that you have or ever had syphilis. Approximately 20 percent of those with lupus will have a false-positive syphilis test result.
Antibodies to Ro/SS-A and La/SS-B (Ro and La are the names of proteins in the cell nucleus) are often found in people with Sjögren’s syndrome. Anti-Ro antibodies in particular will be found in people with a form of cutaneous (skin) lupus which causes a rash that is very sun-sensitive. It is especially important for your doctor to look for the Ro and La antibodies if you are pregnant, as both autoantibodies can cross the placenta and can cause neonatal lupus in the infant. Neonatal lupus is rare and not usually dangerous, but it can be serious in some cases.
Antibodies to Sm target Sm proteins in the cell nucleus. Found in 30-40 percent of people with lupus, the presence of this antibody almost always means that you have lupus.
Antibodies to RNP target ribonucleoproteins, which help to control chemical activities of the cells. Anti-RNPs are found in many autoimmune conditions and will be at very high levels in people whose symptoms combine features of several diseases, including lupus.
Other Blood Tests
Some blood tests measure levels of proteins that are not antibodies. The levels of these proteins can alert your doctor that there is inflammation somewhere in your body.
Complement is the name of a group of proteins that protect the body against infections. They work by strengthening the body’s immune reactions. Complement proteins are used up by the inflammation caused by lupus, which is why people with inflammation due to active lupus often have low complement levels. There are nine protein groups of complement, so complement is identified by the letter C and the numbers 1 through 9. The most common complement tests are CH50, C3, and C4. CH50 measures the overall function of complement in the blood. Low levels of C3 or C4 may indicate active lupus.
C-reactive protein (CRP) is a protein produced by the liver, and high levels of CRP in your blood may mean you have inflammation due to lupus.
Erythrocyte sedimentation rate (ESR or “sed” rate) is another test for inflammation. It measures the amount of a protein that makes the red blood cells clump together. The sed rate is usually high in people with active lupus, but it can also be high due to other reasons, such as an infection.
Blood Clotting Time Tests
The rate at which your blood begins to clot is important: if it clots too easily, a blood clot, called a thrombus, can break free and travel through the body. Blood clots can cause damage such as a stroke or miscarriage. If your blood does not clot quickly enough, you could be at risk for excessive bleeding if you are injured.
Prothrombin time (PT) measures blood clotting and can show whether you may be at risk for not clotting quickly enough at the site of a wound.
Partial thromboplastin time (PTT) also measures how long it takes for your blood to begin to clot.
Modified Russell viper venom time (RVVT), platelet neutralization procedure (PNP), and kaolin clotting time (KCT) are other, more sensitive blood-clotting time tests.
Tissue Biopsies
A biopsy procedure involves removal of a small bit of tissue which the doctor then examines under a microscope. Almost any tissue can be biopsied.
The skin and kidney are the most common sites biopsied in someone who may have lupus.
The results of the biopsy can show the amount of inflammation and any damage being done to the tissue.
Further tests can be performed on the tissue sample to look for autoimmune antibodies and to determine whether the problem is due to lupus or is caused by some other factor, such as infection or medication.
Frequently Asked Questions
Why is systemic lupus so difficult to diagnosis?
It is difficult for a number of reasons:
Systemic lupus is a multi-system disease, and before a multi-system disease can be diagnosed, there have to be symptoms in many parts of the body and lab work that supports the presence of a multi-system disease.
Systemic lupus is also difficult to diagnose because it is a disease that does not typically develop rapidly, but rather develops slowly and evolves over time. Symptoms come and go and it generally takes time to gradually accumulate enough symptoms to indicate that a multi-system disease is present.
Systemic lupus is known as a Great Imitator because it mimics so many other diseases and conditions.
Systemic lupus is difficult to diagnose because there is no single diagnostic test for lupus. In fact, many people may have positive lupus tests-particularly the anti-nuclear antibody test-and yet NOT have the disease.
I was told my ANA was negative, and I don’t have lupus. Is it possible to have lupus with a negative ANA?
Approximately 97% of people with systemic lupus have a positive ANA. Only a small percentage have a negative ANA, and many of those have other antibodies detected in their blood (antiphospholipid antibodies, anti-Ro, anti-SSA). Sometimes the ANA will convert from positive to negative following administration of steroids, cytotoxic medications or uremia (kidney failure).
How can an ANA come back positive one time and negative the next? The doctor said I do not have lupus because of this.
In general the diagnosis of lupus is based off of a combination of physical symptoms and laboratory results. It is usually a diagnosis that evolves over time either towards more certainty or to the conclusion that the person does not have lupus. People can have bouts of autoimmunity with in elevated ANA result that are brief (sometimes associated with a viral infection) and then after it goes away and does not come back for a while it is reasonable to conclude that the person is unlikely to have systemic lupus.
Some things to know about diagnosing lupus:
First and foremost, lupus cannot be diagnosed solely on lab work.
Secondly, positive lab tests for lupus can come and go over time and that is quite common. When they come and go it is less likely that the person will end up with a diagnosis of systemic lupus although that is still possible.
Thirdly, it is very common to get somewhat different results at different labs. However if a person has a very strong case of lupus, it is likely that the ANA will be positive at most laboratories most of the time and that other autoantibodies will be present as well. 97% of those with lupus have a positive ANA test.
Antibodies to double-stranded DNA (anti-dsDNA) are antibodies that attack the DNA—the genetic material—inside the cell nucleus. Anti-dsDNA antibodies are found in half of the people with lupus and antibodies to the Sm antigen are found in about 30–40 percent of people with lupus, but lupus can still be present even if these antibodies are not detected. Erythrocyte sedimentation rate (ESR or “sed” rate) is another test for inflammation. It measures the amount of a protein that makes the red blood cells clump together. The sed rate is usually high in people with active lupus, but it can also be high due to other reasons, such as an infection.
Please remember that nothing is set in stone. If you continue to have worrisome symptoms, seek further medical evaluation so that a determination can be made as to what may be causing your health issues.
10:29pm yesterday
St Patty’s-Style Reuben Sliders
Serves 12 sliders, 3 per person
Tags: brunch dinner lunch burgers “sammies,” wraps and subs cheese rice, grains and breads beef vegetables potatoes sauté griddle food processor or blender Submitted by
Rachael Ray
on 03/17/10If you don’t have time to cook a corned beef brisket and potatoes, try this slider that’s sure to satisfy lovers of the traditional St. Patrick’s Day meal.
AdvertisementIngredients•1 pound ground beef
•Salt and pepper
•3 tablespoons grated onion from 1/2 small onion
•1/2 pound corned beef, chopped
•3 tablespoons grainy mustard
•Extra virgin olive oil (EVOO) or vegetable oil, for drizzling
•4 baby Yukon gold potatoes, cut into 1/4-inch dice
•1 pound sack sauerkraut, rinsed and drained
•1/2 cup lager beer
•12 slices Swiss cheese
•12 slider rolls or party-size rye bread slices, toasted
•2 tablespoons dill relish
•3 tablespoons ketchup
•1 teaspoon Worcestershire sauce
•1/2 cup sour cream
PreparationIn a mixing bowl, combine beef, salt, pepper and grated onion. Place corned beef in a food processor and pulse to grind it up. Add to the beef along with mustard and mix well with your hand. Form 12 small 3-inch patties and coat them lightly with a drizzle of oil.
Meanwhile, heat a liberal drizzle of EVOO or vegetable oil in a medium skillet over medium to medium-high heat. Add potatoes, season with salt and pepper and cook 5-6 minutes. Add sauerkraut and stir. Add beer and simmer 5 minutes more.
Heat a large skillet or griddle pan over medium-high heat. Cook patties 3 minutes on each side. Cut or fold the Swiss cheese slices to fit the burgers and melt over burgers under a tin foil tent.
Pile patties on slider rolls and top with the potato-kraut. In a small bowl, stir together the relish, ketchup, Worcestershire and sour cream. Dollop a generous spoonful of sauce on each slider then set the bun tops or toasts on top.
My new journey Share
11:24pm March 13th, 2010
Mood: melancholy
Well, here I am, thinking lupus isn’t going to get me and then wham! A new thing rears its ugly head from this disease! So, in an attempt to understand the new twists and turns, I have elected to read and explore instead. Knowledge is power they say, so I am equipping myself with knowledge of the whys, and wherefores to neuropathy.
The good news is having taken nursing in college, I do understand the medical terminology in most of the literature, and when I do not understand, I look it up. This has been a turn I was unprepared for. However, that being said, I intend to let the wolf (lupus) know that it is not going to win!
I do not need pity, or sympathy in this journey. What I need is friends who genuinely care, and are willing to listen when I need to rant. I need to know that friends can be called upon if needed to help. The best help can be just a nice comment, or making me laugh! Trust me, I am not hard to please. Little things are the best medicine for me.
I know some people are at a loss when it comes to people who are sick. This is human nature for some and I hope you are not going to judge me for the illness that rules my life. I want to make it clear that this illness is not imaginary or all in my head. It is real. It is difficult to live with. Imagine flu like symptoms of aching and fever and pain. When you are sick, you feel bad, but you get better! Imagine now feeling that way most days, and looking fine on the outside. It is hard.
Anyhoo, this is a rant of mine. Sorry but it helps me to deal with this disease by getting it out in the open. It is like the elephant in the room, everywhere I go, it is there. So, I talk about it in the hopes that it will alleviate some of my feelings of inadequacies brought about by being sick and tired all the time.
I have had to learn to slow down, and accept that I cannot do all the things I wnat to. I have had to learn to llisten to my body. Sometimes I can run and play and be almost normal! Those are the good days! Rejoice when that happens, because it is not often anymore.
I look fine on the outside but the war is internal and it affects so much I love to do. I can park in the handicapped parking space, and if I use it, then I need to do it that day. This winter has been hard for me because I have been housebound for most of it. Not necessarily by choice but due to pain and inflammation from the cold. When I have ventured out, it has been great to see people and enjoy the simplest things like grocery shopping. Rejoice again!
Next time you think “oh there she goes again, talking about lupus” remember that you have the option to ignore it, unfortunately, I do not. So, please do not judge me. Just be my friend and understand that there are good days and bad days and it doesn’t take much to let me know I am loved by those who mean the world to me.
Thanks for letting me vent! Love and blessings to all!
More lupus neuropathy information Share
11:09pm March 13th, 2010
Peripheral neuropathy
MedlinePlus Topics
Peripheral Nerve Disorders
Urinary casts Peripheral neuropathy is a problem with the nerves that carry information to and from the brain and spinal cord. This can produce pain, loss of sensation, and an inability to control muscles.
“Peripheral” means nerves further out from the center of the body, distant from the brain and spinal cord.
“Neuro” means nerves.
“Pathy” means abnormal.
Causes
One set of peripheral nerves relay information from your central nervous system (brain and spinal cord) to muscles and other organs. A second set relays information from your skin, joints, and other organs back to your brain.
Peripheral neuropathy occurs when these nerves don’t work properly, resulting in pain, loss of sensation, inability to control muscles, and other possible problems.
In some cases, the failure of nerves that control blood vessels, intestines, and other organs results in abnormal blood pressure, digestion problems, and loss of other basic body processes. Peripheral neuropathy may involve damage to a single nerve or nerve group (mononeuropathy) or may affect multiple nerves (polyneuropathy).
There are numerous reasons for nerves to malfunction. In many cases, no cause can be identified. Damage to nerves can result from:
Diseases that run in families (hereditary disorders) such as:
Charcot-Marie-Tooth disease
Friedreich’s ataxia
Diseases that affect the whole body (systemic or metabolic disorders) such as:
Diabetes (diabetic neuropathy)
Dietary deficiencies (especially vitamin B-12)
Excessive alcohol use (alcoholic neuropathy)
Uremia (from kidney failure)
Cancer
Infections or inflammation, including:
AIDS
Hepatitis
Colorado tick fever
Diphtheria
Guillain-Barre syndrome
HIV infection without development of AIDS
Leprosy
Lyme disease
Polyarteritis nodosa
Rheumatoid arthritis
Sarcoidosis
Sjogren syndrome
Syphilis
Systemic lupus erythematosus
Amyloidosis
Exposure to poisonous substances such as:
Sniffing glue or other toxic compounds
Nitrous oxide
Industrial chemicals—especially solvents
Heavy metals (lead, arsenic, mercury, etc.)
Neuropathy secondary to drugs (many drugs, including some used for chemotherapy, can cause neuropathy)
Miscellaneous causes
Compression of a nerve by casts, splints, braces, crutches, or other devices
Decreased oxygen and blood flow (ischemia)
Direct injury of the nerve either by hitting the nerve
Prolonged exposure to cold temperature
Prolonged pressure on the nerve (such as a long surgery or lengthy illness)
Peripheral neuropathy is very common. Because there are numerous types and causes of neuropathy and scientists don’t always agree on the same definition of neuropathy, the exact incidence cannot be determined precisely.
Some people have a hereditary predisposition for neuropathy.
Symptoms
The symptoms depend on which type of nerve is affected. The three main types of nerves are:
Those that carry sensations (sensory)
Those that control muscles (motor)
Those that carry information to organs and glands (autonomic)
Neuropathy can affect any one or a combination of all three types of nerves. Symptoms also depend on whether the condition affects the whole body or just one nerve (as from an injury).
Longer nerves are more easily injured than shorter ones, so it is common for you to have worst symptoms in the legs and feet than in the hands and arms.
SENSATION CHANGES
Damage to sensory fibers results in changes in sensation, burning sensations, nerve pain, tingling or numbness, or an inability to determine joint position, which causes incoordination.
For many neuropathies, sensation changes often begin in the feet and progress toward the center of the body with involvement of other areas as the condition worsens. Diabetes is a common cause for sensory neuropathy.
MOVEMENT DIFFICULTIES
Damage to the motor fibers interferes with muscle control and can cause weakness, loss of muscle bulk, and loss of dexterity. Sometimes, cramps are a sign of motor nerve involvement.
Other muscle-related symptoms include:
Difficulty breathing or swallowing
Difficulty or inability to move a part of the body (paralysis)
Falling (from legs buckling or tripping over toes)
Lack of dexterity (such as being unable to button a shirt)
Lack of muscle control
Loss of muscle tissue (muscle atrophy)
Muscle twitching or cramping
AUTONOMIC SYMPTOMS
The autonomic nerves control involuntary or semi-voluntary functions, such as control of internal organs and blood pressure. Damage to autonomic nerves can cause:
Abdominal bloating
Blurred vision
Constipation
Decreased ability to sweat
Diarrhea
Difficulty beginning to urinate (urinary hesitancy)
Dizziness that occurs when standing up or fainting associated with a fall in blood pressure
Feeling full after eating a small amount (early satiety)
Feeling of incomplete bladder emptying
Heat intolerance with exertion
Male impotence
Nausea or vomiting after meals
Unintentional weight loss (more than 5% of body weight)
Urinary incontinence
Exams and Tests
A detailed history will be needed to determine the cause of the neuropathy. A neurological exam may reveal problems with movement, sensation, or organ function. Changes in reflexes and muscle bulk may also be present.
Blood tests may be done to screen for medical conditions such as diabetes and vitamin deficiencies.
Tests that reveal neuropathy may include:
EMG (a recording of electrical activity in muscles)
Nerve conduction tests
Nerve biopsy
Tests for neuropathy are guided by the suspected cause of the disorder, as suggested by the history, symptoms, and pattern of symptom development. They may include various blood tests, x-rays, scans, or other tests and procedures.
Treatment
Treatmet involves:
Identifying and treating any underlying medical problem (such as diabetes) or removing the cause (such as alcohol)
Controlling symptoms
Curing the disorder, if possible
Helping the patient gain maximum independence and self-care ability
Physical therapy, occupational therapy, and orthopedic interventions may be recommended. For example, exercises and retraining may be used to increase muscle strength and control. Wheelchairs, braces, and splints may improve mobility or the ability to use an affected arm or leg.
Safety is an important consideration for people with neuropathy. Lack of muscle control and reduced sensation increase the risk of falls and other injuries. The person may not notice a potential source of injury because he or she can’t feel it. For example, one may not notice if water in a bathtub is too hot. For this reason, people with decreased sensation should check their feet or other affected areas frequently for bruises, open skin areas, or other injuries, which may go unnoticed and become severely infected. Often, a podiatrist can determine if special orthotic devices are needed.
Safety measures for people experiencing difficulty with movement may include:
Installing railings
Removing obstacles on floors such as loose rugs
Safety measures for people having difficulty with sensation include:
Adequate lighting (including night lights)
Testing water temperature before bathing
Use of protective shoes (no open toes, no high heels)
Shoes should be checked often for grit or rough spots that may cause injury to the feet.
Persons with neuropathy (especially those with polyneuropathy or mononeuropathy multiplex) are prone to new nerve injury at pressure points such as knees and elbows. They should avoid prolonged pressure on these areas from leaning on the elbows, crossing the knees, or assuming similar positions.
Prescription pain medications may be needed to control nerve pain. Anticonvulsants (phenytoin, carbamazepine, gabapentin, and pregabalin), tricyclic antidepressants (duloxetine), or other medications may be used to reduce the stabbing pains. Use the lowest dose possible to avoid side effects.
Adjusting position, using frames to keep bedclothes off tender body parts, or other measures may also be helpful to reduce pain.
The symptoms of autonomic changes may be difficult to treat or respond poorly to treatment.
Use of elastic stockings and sleeping with the head elevated may help treat low blood pressure that occurs when standing up (postural hypotension). Fludrocortisone or similar medications may also be helpful.
Medications that increase gastric motility (such as metoclopramide), eating small frequent meals, sleeping with the head elevated, or other measures may help.
Manual expression of urine (pressing over the bladder with the hands), intermittent catheterization, or medications such as bethanechol may be necessary for those with bladder dysfunction.
Impotence, diarrhea, constipation or other symptoms are treated as appropriate.
Support Groups
Additional information can be obtained from the Neuropathy Association - http://www.neuropathy.org
Outlook (Prognosis)
The outcome greatly depends on the cause of the neuropathy. In cases where a medical condition can be identified and treated, the outlook may be excellent. However, in severe neuropathy, nerve damage can be permanent, even if the cause is treated appropriately.
For most hereditary neuropathies, there is no cure. Some of these conditions are harmless, while others progress more rapidly and may lead to permanent, severe complications.
Possible Complications
The inability to feel or notice injuries can lead to infection or structural damage. Changes include poor healing, loss of tissue mass, tissue erosions, scarring, and deformity. Other complications include:
Decreased self esteem
Difficulty breathing
Difficulty swallowing
Irregular heart rhythms ( arrhythmias)
Need for amputation
Partial or complete loss of movement or control of movement
Partial or complete loss of sensation
Relationship problems related to impotence
Recurrent or unnoticed injury to any part of the body
When to Contact a Medical Professional
Call your health care provider if symptoms of peripheral neuropathy are present. In all cases, early diagnosis and treatment increases the possibility that symptoms can be controlled.
Nerve pain, such as that caused by peripheral neuropathy, can be difficult to control. If pain is severe, contact a pain specialist may be able to suggest different approaches.
Emergency symptoms include irregular or rapid heartbeats, difficulty breathing, difficulty swallowing, and fainting.
Prevention
If a prolonged procedure or immobility is expected, appropriate measures (such as padding vulnerable areas) can be taken beforehand to reduce the risk of nerve problems.
Persons with a hereditary predisposition for neuropathy need to be especially careful to limit alcohol and manage other medical problems closely.
All people can reduce the risk of neuropathy by following a balanced diet, drinking alcohol in moderation, and maintaining good control of diabetes and other medical problems, if present.
Alternative Names
Peripheral neuritis; Neuropathy - peripheral; Neuritis - peripheral
References
Shy ME. Peripheral neuropathies. In: Goldman L, Ausiello D, eds. Cecil Medicine. 23rd ed. Philadelphia, Pa: Saunders Elsevier; 2007:chap 446.
Update Date: 9/11/2008
Updated by: Sean O. Stitham, MD, private practice in Internal Medicine, Seattle, Washington; and Daniel B. Hoch, PhD, MD, Assistant Professor of Neurology, Harvard Medical School, Department of Neurology, Massachusetts General Hospital. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
Lupus Neuropathy articles
11:06pm March 13th, 2010
Mood: melancholy
Lupus Neuropathy
from University of Chicago website
Systemic Lupus Erythematosus (Lupus)
Lupus is a broad term for several autoimmune disorders that weaken the body’s immune system by producing antibodies that attack healthy cells, tissues and organs. The name “lupus” usually refers to the most common form, systemic lupus erythematosus. This disease is called systemic because it can affect many parts of the body. It is characterized by inflammation and damage to different tissues and organs with many symptoms including fatigue and fever, swollen or painfully inflamed joints, and skin rashes. Lupus may affect the kidneys, heart, lungs, blood and blood vessels, central nervous system and peripheral nerves. It may suddenly flare up and then retreat into remission.
The cause of lupus is unknown, but it is believed that genetic, environmental and other factors may trigger the disease. Research indicates that lupus may run in families, but to date it has not been linked with a specific gene. It is thought that a combination of several genes may increase the chance of developing lupus. It is not possible to transmit lupus from person to person.
The Centers for Disease Control and Prevention estimate that 1.4 million Americans—mostly women—have lupus. Nevertheless, lupus is difficult to accurately diagnose. There is no definitive test for lupus and symptoms may change over time.
While there is no cure for lupus, the symptoms can be managed with medication. Research currently underway is focused on providing a greater understanding of the disease and finding ways to maintain remission. It is hoped that research will ultimately lead to a cure.
SYMPTOMS AND SIGNS
(Not all symptoms and signs may be present.)
Anemia
Fatigue
Fever
Hair loss
Headaches, seizures
Kidney problems
Loss of appetite, nausea, diarrhea
Rash across the face and nose
Raynaud’s phenomenon (pale or purple fingers or toes from exposure to cold temperatures)
Skin ulcers inside mouth and on the tongue
Sensitivity to sun
Serositis (inflamed linings of organs such as the heart and lungs causing chest pain and difficulty breathing)
Swollen joints
Swollen glands
Pain, numbness and tingling in hands or feet
EVALUATION AND TESTS
(Not all evaluation and tests may be necessary.)
Neurological exam
Electromyography
Nerve conduction velocity test
Antinuclear antibody (ANA) test
Blood tests (for presence of antinuclear [ANA] antibody and for sedimentation rate determination)
Urine test
Biopsy of skin or kidney
TREATMENT AND THERAPY
(Not all treatments and therapies may be indicated.)
Treatment focuses on relieving pain by reducing inflammation, slowing joint and bone damage and improving the ability to function with the disease.
Rest and exercise programs
NSAIDs (aspirin, ibuprofen and Aleve®) to reduce joint inflammation and pain
COX-2 inhibitors (Celebrex®) for pain and inflammation
Antimalarial medication (hydroxychloroquine [Plaquenil®]) to suppress immune response
Corticosteroids (prednisone [Deltasone®], hydrocortisone, methlyprednisolone [Medrol®], dexamethasone [Decadron®, Hexadrol®]) to suppress inflammation
Immunosuppresive medications (azathioprine [Imuran®], cyclophosphamide [Cytoxan®, Neosar®] to slow or reduce immune response
Take safety measures to compensate for loss of sensation
0 comments | Add a comment Latest doc appointment Share
10:48am March 12th, 2010
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Ok, went to neurologist, thinks it is definitely lupus neuropathy… feet… put me on neurontin and said to continue darvocets for pain as needed… well now, another thing on the lengthy list of junk my body is doing....
so, now I have to have an emg and wear shoes in the summer… this is cruel and unusual punishment...lol.
Just crabbing a little here… anyone else take neurontin? Any other lupies with neuropathy out there? Doc said lupus neuropathy has different manifestations compared to diabetic neuropathy. Any help or suggestions welcome…
Blessings and thanks
Jen
sunshine
12:51am March 9th, 2010
Well, another day, another day… I woke up with the pain somewhat on the lowest setting and after breakfast, I got to work on dishes, laundry and general housework. I have felt so bad that I had not done a single thing in a week!
The sun was outside shining brightly and so I went outside and soaked up some of it. It definitely helped my mood, and it made my bones feel better. In the meantime, I did get a lot accomplished so I felt productive as well.
As my strength waned, I relaxed and enjoyed the rest of the evening by chatting with friends and creating a new fb page. It is for the campers of Cross’s Campground and I had so much fun doing it.
What an amazing day after the roller coaster ride of the last few weeks. Now, after bedtime, I sit here in pain yet again. I see my neurologist for the first time on Friday, and it is my hope that he will be able to develop a game plan to attack these demons in my body and let me get the rest I need and live a better life.
I am also looking forward to the camping season this year. It is amazing how fresh air and the outdoors makes me feel so much better and happier. With our grands growing so fast, we want to enjoy all the time we can with them and make many happy memories for them to carry into their adult lives, in effect, giving them the foundation of love through the generations and a legacy they can pass on to their children as well.
Enough rambling for now, just needed to let out a few thoughts and hope that sleep will not elude me yet again. Blessings!
0 comments | Add a comment Is it over yet? Share
2:04am March 8th, 2010
Mood: hopeful
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For most people, winter is a time of snow, happiness and the occasisional drving test due to the snow. The utility bills go up as the temperature goes down. The days are shorter and we stay indoors more. Most of us can identify with all these things.
However, as most of you know, those of us with lupus are not most people. So, in an effort to try to explain the way we feel, I thought this blog may help those who are “normal” to understand what winter means to me.
I am just one person with lupus. Winter is my enemy. The cold weather turns my fingers and toes white and blue and painful. It is called Raynauds, yet one more autoimune to add to my list.
I develop severe dry eyes that cause me to have corneal erosions that require surgery. My skin crawls all itchy like little bugs are on it. My scalp gets inundated with little sores that itch and scab over.
I sometimes get sores in my mouth and nose that are also painful. My joints hurt so bad that sometimes I sit and cry because the pain is overwhelming my body.
I am experiencing neuropathy in my feet now and have to see another specialist, a neurologist. Sleep eludes me when I need it the most. I plan my activities and have to cancel tham because I am too exhausted to do them.
I cannot attend my Christian meetings because it is too cold/too snowy/too painful/. Thankfully, I can attend by phone, which can be my lifeline to my brothers and sisters.
The medications I take cause me to gain weight, and develop osteoporosis, among other things. I have to see an opthalmologist because of one of my medications (an anti-malarial medication). You see, one of the side effects is you can lose your color vision and even go blind.
I am forgetful, and if I do not put something on my calendar, it is not done. That includes babysitting and other family pursuits. So, if I forget you, please be patient, it is not on purpose. I just didn’t put it on the calendar. If you want me to attend something, make sure I put it on my calendar too.
If you want to come visit me, please call first. Odds are I am either in bed, or resting. On the off chance I actually got out and about, be thankful, because it is rare in winter. In the same manner, when I do go out, it takes most of my energy and I am forced to rest my body afterwards.
If you think this is depressing to read, imagine living this every day. The good days definitely make up for the bad ones, but winter is hard on me for sure. As it draws to a close, I would like to say that I love each and every one of you who have called, visited, texted and emailed me this winter. You have helped make it more bearable for me and for that, I am blessed.
The blessings I recieve from all of you can be something so small, you do not even know you did it, but to me it is huge! Thanks for all you do, and I hope in some small way, you can see that I am not and do not want to gripe constantly, however, it does help to vent when I am at wits end and I tend to do that here, online. Please overlook it if it bothers you.
Once again, thanks for just being here and being my friends. I love you all!
Jen
0 comments | Add a comment Common Symptoms of Lupus from LFA Share
7:58pm January 18th, 2010
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Common Symptoms of Lupus
To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.
1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4. Oral ulcers – sores appearing in the mouth
5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
7. Kidney disorder – persistent protein or cellular casts in the urine
8. Neurological disorder – seizures or psychosis
9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
10. Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
11. Abnormal antinuclear antibody (ANA)
People with lupus also may experience symptoms that do not appear among the ACR criteria:
fever (over 100° F)
extreme fatigue
hair loss
fingers turning white and/or blue when cold (Raynaud’s phenomenon)
0 comments | Add a comment How is Lupus Diagnosed Share
7:55pm January 18th, 2010
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How is Lupus Diagnosed
In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from foreign invaders. When you have lupus, your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues, so autoantibodies (auto means self and anti means against: “against self“) are made that damage and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
What Is My Doctor Looking For?
A doctor who is considering the possibility of lupus will look for signs of inflammation. The signs of inflammation are pain, heat, redness, swelling, and loss of function at a particular place in the body. Inflammation can occur on the inside of your body (your kidneys or heart, for example), on the outside (your skin), or both.
However, there are many challenges in confirming that a person has lupus and not some other disease. Lupus is known as “the great imitator,” because its symptoms mimic many other illnesses. Also, lupus symptoms can be unclear, can come and go, and can change. Therefore, a lupus diagnosis is made by a careful review of:
your current symptoms
your laboratory test results
your medical history
the medical history of your close family members (grandparents, parents, brothers and sisters, aunts, uncles, cousins)
All of this information may be necessary for a doctor to make a diagnosis of lupus because, for a number of reasons, laboratory tests alone cannot give a definite “yes” or “no” answer.
No single laboratory test can determine whether a person has lupus.
Test results that suggest lupus can be due to other illnesses, or can even be seen in healthy people.
A test result may be positive one time and negative another time.
Different laboratories may produce different test results.
Frequently Asked Questions
Is there a test for systemic lupus?
There is not a single diagnostic test for systemic lupus. A variety of laboratory tests are used to detect physical changes or conditions in your body that can occur with lupus. Each test result adds more information to the picture your doctor is forming of your illness.
What kind of doctor can diagnose systemic lupus?
If multiple criteria are present simultaneously, the diagnosis may be made by any physician (Family Practitioner, Internist, or Pediatrician). If however, as is often the case, symptoms develop gradually over time, the diagnosis may not be as obvious and consultation with a rheumatologist may be needed.
Where is the BEST place to go for diagnosis and treatment of lupus?
There is no one single recognized center of excellence for the treatment and diagnosis of lupus in the United States today. The Lupus Foundation of America has no mechanism by which it can rate either hospitals or physicians. The general recommendation is to find a physician that is affiliated with a medical school—a university hospital for example. These health care institutions may have faculty on staff who are involved in lupus research, and are generally the most up-to-date on the latest advances in diagnosis and treatment of lupus. These are generally regarded as very good places to go for the diagnosis and treatment of lupus. Certainly the health care institutions with established reputations fit this description.
0 comments | Add a comment Tests for lupus from LFA Share
7:53pm January 18th, 2010
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Laboratory Tests for Lupus
Many different laboratory tests are used to detect physical changes or conditions in your body that can occur with lupus. Each test result adds more information to the picture your doctor is forming of your illness.
Routine Blood Tests
Usually your doctor will first request a complete blood count (CBC). Your blood is made up of red blood cells, white blood cells, platelets, and serum. The complete blood count measures the levels of each. In cases of lupus, these blood tests may reveal low numbers.
Red blood cells carry oxygen to all parts of the body.
White blood cells (lymphocytes and others) help the immune system to protect the body against foreign invaders. The white blood cells called T cells and macrophages are directly involved in this protection. Other white blood cells called B cells are indirectly involved, by producing antibodies to the foreign substances.
Platelets form in bone marrow; they go to the site of a wound to begin the blood-clotting process.
Blood serum is the fluid portion of whole blood from which certain substances in the clotting of blood have been removed.
Urine Tests
Because your body’s waste is processed by the kidneys, testing a sample of urine (called a ‘spot urine’ test) can reveal any problems with the way your kidneys are functioning. Lupus can attack the kidneys without any warning signs, so these tests are very important. The most common urine tests look for cell casts (bits of cells that normally would be removed when your blood is filtered through your kidneys), and proteinuria (protein being spilled into your body because your kidneys are not filtering the waste properly). A collection of your urine over a 24-hour period can also give important information.
Antibodies
The antibodies your body makes against its own normal cells and tissues play a large role in lupus. Many of these antibodies are found in a panel, or group, of tests that are ordered at the same time. The test you will hear most about is called the ANA test. This is not a specific test for lupus, however.
Antinuclear antibodies (ANA) are antibodies that connect, or bind, to the nucleus—the “command center“—of the cell. This process damages, and can destroy, the cells. The ANA blood test is a sensitive test for lupus, since these antibodies are found in 97 percent of people with the disease. When three or more typical features of lupus are present—such as involvement of the skin, joints, kidneys, lungs, heart, blood, or nervous system—a positive ANA test will confirm a diagnosis of lupus. However, a positive ANA test result does not always mean you have lupus. The ANA can be positive in people with other illnesses, or positive in people with no illness. The ANA can also change from positive to negative, or negative to positive, in the same person. Still, lupus is usually the diagnosis when these antinuclear antibodies are found in your blood.
In addition to the ANA, doctors trying to diagnose lupus often look for the following specific antibodies.
Antibodies to double-stranded DNA (anti-dsDNA) are antibodies that attack the DNA—the genetic material—inside the cell nucleus. Anti-dsDNA antibodies are found in half of the people with lupus, but lupus can still be present even if these antibodies are not detected.
Antibodies to histone—a protein that surrounds the DNA molecule—are sometimes found in people with systemic lupus but are more often seen in people with drug-induced lupus. This form of lupus is caused by certain medications, and usually goes away after the medication is stopped.
Antibodies to phospholipids (aPLs) can cause narrowing of blood vessels, leading to blood clots in the legs or lungs, stroke, heart attack, or miscarriage. The most commonly measured aPLs are lupus anticoagulant, anticardiolipin antibody, and anti-beta2 glycoprotein I. Nearly 30 percent of people with lupus will test positive for antiphospholipid antibodies. Phospholipids found in lupus are also found in syphilis, and the blood test cannot always tell the difference between the two diseases. A positive result to a syphilis test does not mean that you have or ever had syphilis. Approximately 20 percent of those with lupus will have a false-positive syphilis test result.
Antibodies to Ro/SS-A and La/SS-B (Ro and La are the names of proteins in the cell nucleus) are often found in people with Sjögren’s syndrome. Anti-Ro antibodies in particular will be found in people with a form of cutaneous (skin) lupus which causes a rash that is very sun-sensitive. It is especially important for your doctor to look for the Ro and La antibodies if you are pregnant, as both autoantibodies can cross the placenta and can cause neonatal lupus in the infant. Neonatal lupus is rare and not usually dangerous, but it can be serious in some cases.
Antibodies to Sm target Sm proteins in the cell nucleus. Found in 30-40 percent of people with lupus, the presence of this antibody almost always means that you have lupus.
Antibodies to RNP target ribonucleoproteins, which help to control chemical activities of the cells. Anti-RNPs are found in many autoimmune conditions and will be at very high levels in people whose symptoms combine features of several diseases, including lupus.
Other Blood Tests
Some blood tests measure levels of proteins that are not antibodies. The levels of these proteins can alert your doctor that there is inflammation somewhere in your body.
Complement is the name of a group of proteins that protect the body against infections. They work by strengthening the body’s immune reactions. Complement proteins are used up by the inflammation caused by lupus, which is why people with inflammation due to active lupus often have low complement levels. There are nine protein groups of complement, so complement is identified by the letter C and the numbers 1 through 9. The most common complement tests are CH50, C3, and C4. CH50 measures the overall function of complement in the blood. Low levels of C3 or C4 may indicate active lupus.
C-reactive protein (CRP) is a protein produced by the liver, and high levels of CRP in your blood may mean you have inflammation due to lupus.
Erythrocyte sedimentation rate (ESR or “sed” rate) is another test for inflammation. It measures the amount of a protein that makes the red blood cells clump together. The sed rate is usually high in people with active lupus, but it can also be high due to other reasons, such as an infection.
Blood Clotting Time Tests
The rate at which your blood begins to clot is important: if it clots too easily, a blood clot, called a thrombus, can break free and travel through the body. Blood clots can cause damage such as a stroke or miscarriage. If your blood does not clot quickly enough, you could be at risk for excessive bleeding if you are injured.
Prothrombin time (PT) measures blood clotting and can show whether you may be at risk for not clotting quickly enough at the site of a wound.
Partial thromboplastin time (PTT) also measures how long it takes for your blood to begin to clot.
Modified Russell viper venom time (RVVT), platelet neutralization procedure (PNP), and kaolin clotting time (KCT) are other, more sensitive blood-clotting time tests.
Tissue Biopsies
A biopsy procedure involves removal of a small bit of tissue which the doctor then examines under a microscope. Almost any tissue can be biopsied.
The skin and kidney are the most common sites biopsied in someone who may have lupus.
The results of the biopsy can show the amount of inflammation and any damage being done to the tissue.
Further tests can be performed on the tissue sample to look for autoimmune antibodies and to determine whether the problem is due to lupus or is caused by some other factor, such as infection or medication.
Frequently Asked Questions
Why is systemic lupus so difficult to diagnosis?
It is difficult for a number of reasons:
Systemic lupus is a multi-system disease, and before a multi-system disease can be diagnosed, there have to be symptoms in many parts of the body and lab work that supports the presence of a multi-system disease.
Systemic lupus is also difficult to diagnose because it is a disease that does not typically develop rapidly, but rather develops slowly and evolves over time. Symptoms come and go and it generally takes time to gradually accumulate enough symptoms to indicate that a multi-system disease is present.
Systemic lupus is known as a Great Imitator because it mimics so many other diseases and conditions.
Systemic lupus is difficult to diagnose because there is no single diagnostic test for lupus. In fact, many people may have positive lupus tests-particularly the anti-nuclear antibody test-and yet NOT have the disease.
I was told my ANA was negative, and I don’t have lupus. Is it possible to have lupus with a negative ANA?
Approximately 97% of people with systemic lupus have a positive ANA. Only a small percentage have a negative ANA, and many of those have other antibodies detected in their blood (antiphospholipid antibodies, anti-Ro, anti-SSA). Sometimes the ANA will convert from positive to negative following administration of steroids, cytotoxic medications or uremia (kidney failure).
How can an ANA come back positive one time and negative the next? The doctor said I do not have lupus because of this.
In general the diagnosis of lupus is based off of a combination of physical symptoms and laboratory results. It is usually a diagnosis that evolves over time either towards more certainty or to the conclusion that the person does not have lupus. People can have bouts of autoimmunity with in elevated ANA result that are brief (sometimes associated with a viral infection) and then after it goes away and does not come back for a while it is reasonable to conclude that the person is unlikely to have systemic lupus.
Some things to know about diagnosing lupus:
First and foremost, lupus cannot be diagnosed solely on lab work.
Secondly, positive lab tests for lupus can come and go over time and that is quite common. When they come and go it is less likely that the person will end up with a diagnosis of systemic lupus although that is still possible.
Thirdly, it is very common to get somewhat different results at different labs. However if a person has a very strong case of lupus, it is likely that the ANA will be positive at most laboratories most of the time and that other autoantibodies will be present as well. 97% of those with lupus have a positive ANA test.
Antibodies to double-stranded DNA (anti-dsDNA) are antibodies that attack the DNA—the genetic material—inside the cell nucleus. Anti-dsDNA antibodies are found in half of the people with lupus and antibodies to the Sm antigen are found in about 30–40 percent of people with lupus, but lupus can still be present even if these antibodies are not detected. Erythrocyte sedimentation rate (ESR or “sed” rate) is another test for inflammation. It measures the amount of a protein that makes the red blood cells clump together. The sed rate is usually high in people with active lupus, but it can also be high due to other reasons, such as an infection.
Please remember that nothing is set in stone. If you continue to have worrisome symptoms, seek further medical evaluation so that a determination can be made as to what may be causing your health issues.
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