As I have waded MANY times through the entire "list" of autoimmune illnesses, diseases, syndromes and disorders, again I go back to the spot where I have to wonder: #1. Is my diagnosis correct? #2. Is there another 1, 2, 3 and so forth of AI's that I have, and if so are they being "managed" by the other medications I am on? #3. Are my entire entourage of physicians correct and have they done the proper testing, given me the right medications to help me gain me "control" over further degeneration, more pain, and one day truly feel like I have possible remission? Is there even anything such as "true remission" on some and/or all of the AI's? Is "this" (whatever stand in time I feel I am "at my best as far as being symptomatic) and I will just go onto endure all that is not alleviated as far as pain, future health issues, more pain, and less of a way to fight these illnesses? Does the medications that I am on now, or the ones I had been on, and other types of treatments, therapy, surgeries, and so forth truly mean my "health future" maybe "brighter"? Or I am, along with my physicians and so on, really making a true difference in how I am effected in the long haul of the future?
I KNOW for myself, and I will say probably the majority of patients, caretakers, spouses, families and friends ALL have these thoughts go through their minds. If like myself, this happens quite frequently; especially if you feel you have not made much progress in getting symptoms, fatigue, inflammation, pain, and others where you feel you have reached a comfortable level of relief. As any pain specialist, or probably any type of physician will tell you, there is ONLY so MUCH that can be done. For some, like those with Multiple Sclerosis (MS), it appears there are many more available treatments, more doctors that are familiar with the disease, and you hear fairly frequently of MS patients going into remission, and some for years.
Yet, as far as RA, Lupus, Sjogren's, Raynauds, Diabetes 1, Pernicious Anemia, Addison's Disease, Still's Disease, and the others, not so much. Usually those of us especially with "multiple" AI's never seem to feel as if the diseases are under control. We may feel that way for a week, or even a month or two, yet for me, each and every morning I put a foot to the floor, the RA pain is there. Now some days are better than others. We also know for a fact, weather, stress, jobs, family, and what we do, all have an effect on just how much "relief" we have from one day to the next. Brain Fog is one of those that rather than feel as if I maybe moving forward, I seem to be regressing further into the fog. Month after month I can tell by the way I do things on a daily basis, that the "fogginess" of Lupus, RA, Sjogren's, and such tends to get worse, not better. I am making many more lists, I must go through and reread paperwork over and over again. At times, even seeing something online, I can't recall it, or I walk into a room, and can't remember why I am there in the first place! I tend to leave things "half done", only later to come back and see, "Oh, I didn't finish making the bed", or I never watered all of my plants... possibly Mom asks me to look something up, and if I do NOT write it down, it's as good as gone by the time I leave her house and drive a whole 6 or so blocks to my home. Of course, there are many more little "things" that either I do, or don't do.. and I realize it is due to the Lupus Fog...
As far as the 2nd guessing, I am quite sure I have probably took my symptoms, as they come up, and now several new ones are popping up, and go all the way back to "square one" to research the entire ordeal. Do I really have Lupus, RA, Sjogrens' Raynauds.... and so forth... OR do I have Myasthenia Gravis, some type of "regional pain disorder, compression fractures in my lower back causing severe pain in my hips and legs. Maybe I have a hip that is totally worn out or getting that way. Much like my knees, I've had one hip give me "the blues" on several occasions. Enough that it sent me to my Orthopedic Surgeon so he could put a huge needle full of corticosteroid in it. Usually, that would work. My knees, shoulders and elbows were much the same way. I would have a huge bout with my shoulder or elbow, or knee and I would go in, get an injection into the joint, and I may do well for a day, week, month or years! OR like my knees and shoulder did, after so many injections over the years, and several arthroscopic surgeries on them, I had to have both knees totally replaced, as well as my right shoulder. My elbow has had surgery and has screws in it, and I know it has torn loose and really needs a "scope". I fear though it would be just like my knees and shoulder, the doctors does a scope, and he sees it is totally worn out, totally degenerated.. so "fixing" it is impossible. So, like my knees and shoulder, I went for years, as long as I could stand it, and the injections helped, then I had them completely replaced. You reach a place that you know there is no way you can put up with the severe pain, the loss of range of motion, the weakness, the inflammation... so you make your choice.
I've never regretted ANY of my joint surgeries. Each and every one, from the scopes, until the total replacements, gave me the relief, more strength, better use, no inflammation, and was a great deal better, than not having them replaced.
But, any type of joint surgery, even with the arthroscopic ones, there is never a guarantee you will be "better".... it could mean it may not help at all, OR you have complications, or possibly it feels worse. Now, once you have a TKR (total knee (joint) replacement) that does provide relief, stability, range of motion etc.
But, with the scopic types of surgery, as incredible as they are... and also as incredible as our CT scans, and MRI's are.... NEVER did ANY of them give my doctors the "real story" in my joints. Once they "opened" the joint up, then is when they discovered my joints were totally gone, in no way able to be repaired or "patched" up. I've had my Orthopedic surgeon tell me that over and over again. As good as our tests are, sometimes they do not give the big picture.
My neck was a prime example. I went for YEARS with severe neck pain. I was not able to turn my head very much, or bend it forward or backward. I constantly had severe pain in my shoulders, especially my right shoulder and shoulder blade. I went through numerous tests, from the MRI's, the CT Scans with the dye, regular X-rays, and even a couple more tests to check for nerve damage... EMG's and so forth. They found some nerve issues, both in my legs, and down my arms, yet I jumped from one specialist to the other, with every test, every scan, all of the tests they done as far my nerves.... yet it took me forever and a day to finally CONVINCE a very astute, very stubborn and head headed, yet the very BEST SPECIALIST in the area of not only joints, joint surgery and replacements, BUT he also knew spinal surgery, better than any other doctor I can remember.
After FINALLY getting him to do the "reverse shoulder replacement" on my right shoulder, the first 8 weeks I was truly amazed......
It was not long after that, my shoulder blade on that side, began to feel as if it were burning. Of course I had the shoulder totally replaced, so the "searing" pain (unless something happened like an infection) should not be giving me problems.
Again, back to the same Orthopedic Surgeon, who just DESPISES "educated patients". He just think HE is the "master" over all things "ortho" and we as "layman" don't know "crap"...
I've told my own story over and over about his horrid "bedside NO manner"... as before when I went in to tell him what was happening, he swore that the pain should not be coming from my neck. Well, I totally knew unless like I said there was an infection in the joint replacement, OR the huge bundle of nerves that run right along in that area, and out to the shoulders, shoulder blades, arms, and so on had something wrong. Which "could be" but was not likely.
Again, we go through a special "scan" of my neck. It comes back with C-3 through C-4, C-5 and C-6 having issues. Exactly how much, well from the pain I was having and looking at the CT scan with contrast, showing "bulging, and a few other issues, the 4 level "replace 2 discs" and fuse the other 2, is what was decided. He was set even with my shoulder, that if he got actually into the "joint" (right shoulder) and he didn't see nearly enough damage then he would "repair" it and not replace. But, all cards on the table, said "reverse replacement". So, the "new shoulder" was waiting for me before the surgery. Sure enough, after being able to "see" the severe damage, there was no question a reserve total shoulder replaced.
Albeit the same with my cervical spine. There was a great deal more damage "inside" that the scan didn't pick up, which meant he (and I) were right on with the "replacement/fusion) discectomy. By the time I came out of the anesthesia, I already knew I was 100% BETTER! Even though it was the quickest surgeries for me, as far as very little pain, etc after surgery, it was 6-8 weeks before I could do much of anything but walk. Which kind of was "bad". Because it "felt" so much better, I had to be careful and watch myself. It was a miracle.
Later he came in to tell me what he found etc, and that I actually was pretty "right on" with my own "diagnosis"... thus that kind of helped for the both of us as far as NOT feeling like he needed to make me feel crappy just because I do my "homework".
Now of course is a totally different type of problem. Not one that is easy to face, nor easy to diagnose, and also one that many, MANY times said "I WOULD NEVER" have my lower spine operated on. Due to ALL of the bad things, from online, from people you see and know... it was something I never wanted to even have to give thought to. Well, here I am once again wondering what will have to be done in this case.
So, that is why I am questioning EVERY diagnosis, every thing I have read, researched, been told, by both other patients and doctors also... whether remotely that I even want to have the "discograph" or whatever they call it. Yet, even sitting here now, I feel that "pain" that is so very familiar. If I sit for a while, it begins that burning in my lower back, butt, and down my legs. I still feel like my hips are a part of the puzzle, but he insists my hips aren't causing this kind of pain. Of course he takes an X-ray, that basically says the same thing that the CT Scan I had about 6 weeks ago says, thus this stupid invasive "discogram" will probably also show the same... The TESI (Transforminal Epidural Steroid Injections) worked for a few days, thus that "tells them" that are hitting the mark. That is "a part" of this. Yet, I am still convinced my hips are also a part of it also.
So, the "gram" is set up at the end of May around the 27th. Everything else going on left me with no choice but to make it a couple of weeks off. First of all, again I will have to have my son drive me. I can't drive after having it done. And Jim can't drive and no way my Mom could drive in Dallas. She does well to drive to the market and back in Ennis!
So, I am now kind of "fed up" with all of it. My hopes are the pain will cease and desist, so I can go on and enjoy my summer, and not be down with a freaking major surgery.
Plus who the hell is going to take care of me, and the house, etc??? Jim can't do a lot of things as it is, and no way would I have some stranger coming in to help us, while I recover.
So, there are lots and lots of things to consider, before jumping head first into this quagmire of tests and surgery!
I thought I should post, so everyone would not think I had up and disappeared! LOL!!! I would imagine "some" people could care less if I disappeared forever and to eternity! ;) But, that is another very LONG story for another TIME when I feel I can "blog" a bit more as far as my own situation goes. For now, first of all, I am thrilled to be helping WEGO on several projects. I also am of course continuing my Platinum Ambassador activism. I also of course also post, blog, and so on about other chronic illnesses, and chronic pain. My pain level has been out the roof! Yet, I realize that others are either as bad as I am, OR possibly worse. I have been just as busy as a bee with things here at home. From taking down old desks, cleaning closets and dresser drawers, sanding on the inside windows in the spare room... to getting rid of LOADS of things that either have not been used in eons, never will be, are probably to old to use, and things that are generally worn out. I HATE a home full of "stuff" that is just that, stuff. So, I am pairing down a great deal of everything in each and every nook and cranny of this house. I am also in the process of finding my Mom an Orthopedic doctor. She has got to have her hip seen about. It is to the point that even Mobic, and it is a strong NSAID is not helping her. She is "still limping that leg and hip. So, it is more than time to have it X-rayed and get a specialist to either give her an injection into that hip, or something needs to be done. Of course my own issues with my hips, both, and lower back are also nuts. I had to POSTPONE the discograph again due to these flares and the "immune" situation for now, especially with prednisone... thus I am GOING to have that done a week from today on the 22nd... and I hope this time I can get there, and get it over with. I am ready (well no one is ever ready) to discuss "what" needs to be done, not done, and how to deal with the ordeal. I have to get a huge amount of blood work done, especially the "TB Gold" test, before my insurance will think about covering Xeljanz. So, I will go in later in the week to get that done. Then if the insurance will okay it, I will be trying the Xeljanz for the RA etc. I know I had a couple other things to "say" but now I cannot remember them... alas brain fog... ;)
