Showing posts with label hip pain. Show all posts
Showing posts with label hip pain. Show all posts

Monday, June 15, 2015

I am here still with the Flares, and more... Lupus. RA, Xeljanz, insurance, and Chronic Illnesses and Pain

 I 've added 3 photo's of what the side on my right knee looks like now.

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... ;)

Saturday, May 9, 2015

Second Guessing Your Autoimmune Disease(s), Is there a "real remission" to some of AI's - Sjogren's, Lupus, RA, and more...

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!


Friday, May 8, 2015

I continue this ongoing saga of Lumbar spine issues, bad weather that I am SICK OF, am Happy to see more people coming to my blog, and things about Autoimmune and Arthritic Illnesses

Well, here I am again... another weekend that "appears" to look like all hell is going to break loose. Which again is really irking the crap out of me, because I do not want to have to POSTPONE yet another trip to the Casino!!!

I've already been through this a couple of times, last weekend, it was supposed to be "earth shattering" weather and it did NOTHING.

Now here it is Mother's Day, and again the forecast (extended) is showing rain, rain, rain, storms, floods, and more crappy weather.

Actually, I went, got out my brand new white jeans that I've been wanting to wear, and they still have the tags on them. I also have a beautiful top that just looks awesome with them, plus add in my rhinestone studded sandals, a bit of makeup, a necklace and earrings, and I am set to go to Winstar!!!

Well, I call my Mom, and she has not even "given it much thought" of us going. Yada, yada, yada... about how bad the weather is supposed to be Sunday, and thinking we should postpone... well now we are looking at much later in the month, when I had doctors appointments in Dallas - two of them back to back on the 20th and 21t! Neither of which I can miss at all. One is to have my pain pump refilled, the other is my very LONG AWAITED getting to see my Rheumatologist again. It has been months and month, and months since I saw him. In fact due to something, in fact, I believe I had double pneumonia and was supposed to see him. I had to reschedule and the other appointment was like in December of 2014!!! So, it has taken me patiently waiting now for 6 MONTHS just to get into see him. I can see his PA of course much sooner, but seeing him, especially since we are possibly thinking of a medication change... I MUST NOT miss this appt!

I am NOT happy about this "discograph" business. From all I've read it is NOT a "comfortable" type of test. It is also much more invasive than having epidural steroid injections. So, that raises the risk of a spine fluid leak, or infection more than the injections. I see that depending on the scan and how far it needs to go, it can be anywhere from an hour to 2 or 3 hours, depending on what all the doctor orders. I know Medical City Hospital in an Excellent place. So, that in itself does not bother me. But, anytime now when you have a "compromised" immune system, whether autoimmune related, or whatever the case may be, you really are trying to "avoid" anything that could have the potential of causing infection, especially into the spinal fluid, blood and so on. 

When you are sick, the hospital is the very place you want to avoid usually. Because the others around you maybe having many more types of illnesses that could potentially cause a worse infection.

I've not really had many issues, as far as surgery goes. I usually do well under anesthetic. As far as a surgery, I have not had any massive complications. Yet, when you combine the AAI, the prednisone, the Orencia, and other meds I must take, then there is the rise in whether an infection could happen, rather than someone who does not have immune issues, or is not on medications that could cause you problems later.

I also know this is going to be one of those types of tests that no matter what I already have had done in the past 6 weeks, which was the CT Scan and then the epidural steroid injections into the Transforminal space around those vertebra, that shows that is the place of issue, this doctor STILL is going to insist that I have this other stupid test done.

Of course yes, I could "find" another surgeon. Well, that could lead to the exact same situation, and also could lead into me not having the "best of the best" as far as my Orthopedic surgeon go. He is the one that truly remedied my shoulder pain and my neck pain. Without him, I honestly don't think I would have made it.

To me, he is the "gold standard" in surgeons for these types of problems. Although once again his bedside manner is about like a jackass, and he is an argumenative, and thinks he knows absolutely everything, and patients as far as he is considered need to "follow his rules" and NOT try and tell him anything you may know.

So, it is trying to decide what is worse to deal with when it comes to having him as an Orthopedic Surgeon.

I've got to go to get dressed and run to "Wally world". I need a belt to go with some white jeans I would like to wear, thus there is about the only place here to look. Then I have to run Jim over to the Clinic in Waxahachie about some of his meds.

More to come.....

Thursday, April 30, 2015

Where do you Go? Hip, lower back pain - CT Scan shows "something" yet it seems like now enough to cause this type of pain...

I've been going over and over this stupid CT Scan from a month ago. I wished I could get more information, but when I look up what is being told on it, I am getting a "google" search of all types of issues. Some of them may pertain to me, and others I am not sure of.

I am sure of a couple of things. I almost am to the point I cannot sit at my computer. If I sit here more than 10 minutes, my hips, butt and lower back just throb, burn, ache, and it feels like very deep bone pain.

Nothing has really changed since the injections (Transforminal Epidural Steroid Injections) which were two weeks ago, as of tomorrow. I thought I had felt a bit of relief that first couple of days afterwards. But, then I began to notice my hips once again feel like they are on fire if I sit for very long at a time. I can get up, walk around for awhile, then the pain comes back, resonating kind of from my tailbone, down into my hips, around the outer part of my thighs, and often into my calves and down into my heels. I notice if I try and get out in the yard to pull weeds from the flowerbeds, pick up things and put them in our trash cans outside, try and break down small limbs from the trees and also trash them... after a bit, again that deep down kind of like a burn starts again. So, if I sit for too long, especially here at the computer, or if I go and walk or stand is the worst for a long time, my hips and very lower back just hurt like hell.

I am still in the thinking that I have two problems... the hips and then my lower lumbar spine about where it joins at my tailbone. That is actually where the CT picked up some issues, I have vertebra I think, that has "slipped forward"... plus I have the Retrolisthesis

which is also meaning it has slipped the opposite of what many of them do... plus I have known about my "crooked spine". Now the levoscoliosis I guess is enough that it shows on the scan. All of which even though don't appear on the CT as being horrendous, as before they have done Scans, X-rays, MRI's that show not so bad. Then they decide to open the joint up and take a look, and sure enough the "arthritic" degeneration and damage was where it was not seen on those scans. 

It has been exactly two weeks ago today, since I had the "Transforminal Epidural Steroid Injections" in my very last Lumbar spinal vertebra L-5 and then I believe S-1 shows issues also.

I thought right after the injection that it felt better. Yet, after a couple of days, I began having the same types of issues, pain when I sit for very long at the computer, pain if I stand too long in one place, or even if I walk for a long distance, especially like shopping... where you stop, then walk a few steps, and over again....

My thoughts are that I have two issues, as I've said all along. I feel both hips are a part of this, simply because this is what has happened a couple of times over the past 6 or so years. It seems about once every two years my hips act up, probably more like bursitis. Which, my orthopedic surgeon seems to think that "bursitis" of the hip would not cause all of the pain I am having! WELL, I have news for him. I've had it before and it hurts like hell. So, where he gets off thinking that my hips are not the issue and my back is, I am not sure...

Anyway, I am headed to Dallas in just a bit to follow up on those injections. While I am at my pain specialist, I will ask him what his opinion is on having this discogram/discograph... that the ortho doc seems to think I should have....

When I return, I will update everyone on the situation!