I've been keeping a more private journal since I doubt anyone truly cares about all of my thoughts and feelings on the day to day battle with Lupus. (Frankly, I could use a few days without those thoughts myself). Next week is my big week for testing through neurology. I can't stand the doctor but the tests need to be run. We want to make sure I'm not fighting MS instead of Lupus. I saw my blood doctor a couple of days ago and he's going to start infusion therapy for my low immunity. This should be really interesting since Lupus is an autoimmune disease! But the sniffles and the chest tightening is already starting so I need to get busy and start fighting back or I'll end up like I did last year with one gi-normous illness that lasted three months. I just wish he would've started this back in May when he had the same darned numbers! I was too compliant to point this out back then! Not anymore. I ask questions and I expect answers in English -- not doc speak! I am also being tested for narcolepsy which I truly think is a waste of time and money but what the hec, maybe I'll learn something.
You know, the hardest part, now that I'm a few years into the "she has lupus/she doesn't have lupus" debate, I want to just give up. My liver is suffering from all the drugs and the only conversation I seem to contribute is in regard to illness. Since I got off the pain medicine, I'm a bit more alive which is a blessing but the pain, well the pain is like a balloon. Somedays it's much more inflated than others. Last Sunday I almost went to the ER just to get pain relief after I fell especially hard on my knee. You see, most of my pain is in my lower body so when my knee hit, it hurt to the point that I didn't move for a full minute and then finally checked for any bone sticking out. Thank God there was none but the pain was excruciating! Today I hit the same knee on my steering column and nearly passed out from the pain. My poor son stood by me (by the car) asking if he should call someone. Instead, I regrouped and simply limped. New rule -- no blood, no doctor! However, I will carry a cane in my car. My balance is shakey at best so I guess I'm asking for trouble.
Well, my hands are acting up so I'll wrap up. I'll pray, as I do each night, for my fellow sufferers. Take care.
My mother just gave me this cream for my feet. I have terrible neuropothy and usually use a diabetic form just to handle the pain but this stuff is wonderful! It's called J.R. Watkins, pain relief burn cream. It doesn't smell bad and it appears to last. I wish I could use it on all of my joints but they don't burn, they just ache! It's not a bad night so tonight I will try not to complain. I will simply try to enjoy the evening!
Today is a better day. Sleep is SO important so when I woke up at 3:00am and couldn't fall right back to sleep I nearly panicked. Ever since my bladder shut down a few weeks ago and then started back up, if I have to take a bathroom break, I don't hesitate. I did fall back asleep with a sleeping pill. I also found some new pain cream to help my legs. I had to thank God that I had enough left on my credit card to buy a few different selections to see what might work. I very much need to see a pain doctor for trigger shots but with six doctor's appts. already, I'm done!
I can tell my bladder is infected again -- for the sixth or seventh time in as many months. I'll have to call the doctor but there doesn't seem to be an answer to this one. I can't share with my mother as she already is scared to death everytime I say anything's wrong. But I'll still take this over the catheder anytime! I'm guessing this is the Lupus doing it's business. Maybe with all the doctor's appts. I'll find out this month.
More pain today. I started off strong-- and I do mean strong! I felt literally "great!" for the first time in, well, years I guess. But I overdid things. My hair has changed a lot due to my medication so straightening it is a real challenge. It can take an hour with me on my feet. I lived through that but later did the grocery shopping and when I came home I could not get over the swelling in my legs! I have very few tiny parts but my ankles and wrists are two and both were so large! My doctor wants to do an MRI on these areas that have the most swelling. That will be a tough choice to choose the worst.
Next month is my Dr. month period. I see nearly every "ologist" there is. My neurologist is Oct 3rd and I am to ask for a Lumbar Puncture. As my ANA scores remain zero, my Dr. is determined to find out what is causing all of this pain and swelling. I'm still curious as to why there would be a need for a liver biopsy but he wants that too. He is undoubtably the most thorough Dr., I've ever had!
Oh, and I am now into yet another bladder infection. This makes six in six months. The meds will work initially and then stop being effective by day 4 or 5. When I shared this with my Rheum Dr., he had some sort of ephany that I obviously didn't catch. He ordered blood work and told me to hustle in for the tests.
I used to panic but I don't anymore. Somehow I make it through each day. Writing eases the pain for some reason. Not in my wrist but in my head. If I hold in the pain thoughts, it just amplifies everything else. Perhaps I should start a private diary instead of using the space here! I guess I just want others to know that we often seem to experience similar issues. I just vocalize mine through this blog.
It's a much better pain day today. Instead, the Lupus stole all of my energy this afternoon after I didn't put my 100 spf on this morning. That's how you learn, I guess. Between the fibro and Lupus, everyday is an adventure. I tried a new sleeping pill last night from my doctor but found it stopped my bladder from working again. It was the first time I ever self-cathed and it wasn't as bad as I expected. I just know that the sleeping aid is NOT worth the cath. I'll be back to over the counter meds tonight.
I just found out I have degerative arthritis in my ankles and feet. That explains a lot. I've often said I'd rather be in a wheel chair over this pain but then that's not true, either. I rather just be without the pain.
Dont give up on the tests. I too tested positve ANA three times, high titers, and also for Sjorgens. My dx-dna came back negative( which alot of ppl will show negative). I requested a biopsy and that came back positve for SLE. The Rhuemy was trying to tell me that I didnt classify as Lupus until the biopsy report that she requested. When I first met her, I had all of my blood work with me and I had a very noticeable Malar rash.
I can tell you though, prior to finding out, I went to so many Dr.s (my head was spinning). The other frustrating thing was the Dr.s look at you and say, " you dont look sick, you dont look like you have lupus," Yes, I wasn't happy about the confirmation. However, I sure did feel like saying, Nah...Nah...poo.poo, I told you so! I have a co-work that has lupus, and she's had lupus for 10 years. She said, she had so many tests, all of them came back negative except 1. Alot of it was based on clinical findings. Honestly, if it wasnt for her telling me about the biopsy, I would be going to more Dr's too.
The best of luck to you.
It's overwhelming having to go to so many different specialists. I asked each one to please send a status report to my GP. It took time and effort on my part to make sure all the reports got there. Then I sat down with her and we talked. I helped a lot.
Hugs and Good Thoughts,
Thank you so much! We had our 30th class reunion and I've had a lot of unexpected and exceptionally special memories lately. The acceptance of whatever this disease is is slowly creeping over me so my important memories are more forefront. Whoever thought a person could semi get accumstumed to pain?
Again, thank you for the nice comments!
you inspire me!!!!!!!! I wrote on my mirrior so that every morning i can see "Dont let Lupus control your life". I have Lupus, I am not Lupus. Thanks for making my day when i read that
Thanks Linda, I've actually been thinking about you too and hoping things are going well. The depression that has accompanied this disease, whatever it is, has been so debilitating. I've started hearing voices at night, fortunately, not the type that tell me to hurt myself, but they frighten me. My doctor thinks it might be because I'm changing medication and I'm hoping he's right. I hadn't heard anything for a couple of weeks and then last night I woke up standing by my bed terrified. I had no idea where I was or who I had been talking to. Yes, I know it sounds totally crazy but that's exactly how I've felt lately -- crazy! Today I finally went downstairs and worked out for a short time and I've been eating really healthy. Oh, and my tachacardia (super high pulse) has been off the charts so I've cut out a lot of my caffine sources. I'm far from suicidal but I definitely do not like the life I'm stuck in right now, but I'm sure I have a lot of company on that one. Anyway, take very good care Linda. Please feel free to give me an update on you. The best way to get my mind off of me is to care about someone else!
Hey, just thinking about you.
Hi Linda! I hope all is well with you. Right now I'm in a good phase and I thank God constantly (yes, I'm one of those religious folks!) because I know that next week can be a whole different story. We're experiencing Spring weather right now and that is always a big mood booster to us Midwesterners. I know we're supposed to stay away from sunlight but I love having the curtains open and fresh air streaming through. I'll see if I have to suffer for it later!
I see my old rheumy tomorrow. It should be an interesting visit. I haven't seen her since my last hospital visit when all my joints swelled up and I got so sick. Wait until she finds out the dose of prednisone I'm on! But I am working steadily to get it down. I'm taking everyone's advice and going super slow - .5mg every five days. If it takes longer, then it takes longer. I'm really going to take it one day at a time.
Write when you get a moment and tell me how you are!
WAY TO GO !!!!!
Oh, my gastro system is a personal hell! When I was a girl/teen, I would starve myself to stay thin and was always hungry. Now if I eat more than 1/2 a cup to a cup of food, I can barely breathe. It's like having an involuntary gastro surgery. But yes, I'm very bloated and I'm often nauseous. I've had 4 (yes, FOUR) colonoscopies in the past two years and I have the clearest colon in the world. My stomach is chopped liver but it's small ulcers so it's not that terrible. When I get in a flare, I'll often throw up a small amount of blood in the process. I'm very sorry about your skin cancer. I will keep you in my prayers.
PLease take good care and I guess we can just consider our bruises our own personal Lupus tattoos!
I'm Trish, I have just joined the site. I read your pet peave and felt compelled to write back.
First of all never feel bad about venting it always makes you feel better!!!
I am not effected in my lungs I can't relate to you in that area but I can imagine it is very limiting. I myself just get so exhausted sometimes that I just feel like someone is pressing me down on the bed in the morning and it is a real battle to get out. I pretty much feel tired the majority of the time. It really sucks!!! I try not let it get me down but you do feel like having a good complain. I'm very lucky that I have a beautiful partner who is very supportive , thoughtful and understanding. He helps me a lot. My Mum has also been absolutely beautiful to me!!
On the second peeve, that I can totally understand. I have buises on my shins. I worked in Child care and was constantly banging my legs on the low furniture. Bruises started appearing and not going away. I went to get a spot check for skin cancer and he informed me that the bruises on my shins were like tattoos, they weren't going away. I was more devistated about that then finding out that the spot was cancerous (on my neck of all places!!!) and had to be cut out. So now I never wear shorts and hardly go swimming because when I do I get stared at. My Partner has to be careful when we play fight as I can end up with finger marks on my arms.
So in closing thankyou for my vent and I sympathize and understand.
One more thing has your stomac been effected? Mine is so bloated at the moment and I have to watch what I eat?
Thanks Sandy! I actually am still feeling good. I have three solid days of clear thinking and I've gotten a lot of things accomplished that desperately needed to get done. My only problem is falling. Out of no where, I've fallen twice. I'm hoping it's the dizzy part of Lupus and not MS. I REALLY do not have the patience for another serious illness! (Though God bless you out there who deal with this right now.)
Here's hoping for a few more good days! We have the weekend coming up and I would really like to do something besides break promises to my son that we'll do something!
I hate extreme temperatures too but cold is what kills me most. I am so glad to hear you had a good day too. I do the same thing - wake up feeling great and push that to the outer limits. I hope you are still feeling good.
wonderfully said! Life is so precious and the memories are proof of living. Let's not give the memories up yet.
Oh yes, fibro and begging for death - I do know! I was diagnosed with it ten years ago, and like you, I choose lupus over it any day. It is like a screwdriver, subtle and relentless, that enters your brain and sucks you into the most un-beautiful state. Death seems so much sweeter than that gnawing ache. I do know, which is why I am thinking of you, and wishing you can find the button that clicks it off for a while.
So, one thing I learned about pain, is that you have to break the cycle. And at first you think, you need to break it forever in an instant, but then you learn, if you just do it for one second, an instant at a time... the loop gets temporarily broken. And yup, that's about as brilliantly clever as I have become at fencing with fibro!
And as for your son and popcorn - hello? He's a teen! It's all about popcorn!!