4.25.2010

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.

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!

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.

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!

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!

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.

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!

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!

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...

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...

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!