Monday, July 29, 2013
The (My, for sure) Mind Boggling World of Lupus, RA and Their Destructiveness and Severe Pain
(partial post that I put up on FB answering a friends questions... and it seems to fit here very well also.)
You are so right on the "bionic" woman part for sure !!!!! I will try and not miss any of your questions ... brain fog can be heck.. as far as the "symptoms" of Lupus/RA/Degenerative Joint and Disc Disease (and others)... several of those symptoms like my joints deteriorating and needing surgery very early in life, severe chronic pain in my joints, stiffness, swelling, filling full of fluid.. all of those have been with me since about the age of 30. I had joint issues and a couple of surgeries actually by 25, but at the time they thought those issues were strictly related to an old accident I had playing baseball with my cousins when I was about 15. I also had severe migraines by the time I was 17 (I feel those may have been some of the "beginnings" of the entire thing). About the age of 35, both shoulders and elbows had already had many corticosteroids injections. I was continually in pain with one or more of them. They would swell, fill with fluid, be hot to the touch, I would have sometimes hardly any motion in them. Yet at that time, it was a I guess way too early, plus the "RA,Lupus" stuff at the time was really not something even the medical profession knew a great deal about. I was told I had "genetically inherited" bad early osteoarthritis. After that the surgeries, tests, injections... mainly my joints it was attacking then, and still much of it is joints falling apart. I had various other symptoms throughout my life... chronic pain and the joint issues, plus at 40, I had my FIRST heart attack! I think if the doctors would have known MORE about Lupus at that time, and RA, and all of the autoimmune stuff, they may have been able to put it all together. Yet, back then, it just still was so much unknown about any of these illnesses. I DO know a couple of very young women at that time, that did have Lupus, and back then it was basically a "death sentence". Not many had heard of it, and if so they knew nothing about what was happening to our bodies. So, in 2005, I came back to TX, after living in Seattle for 5 years. I had a "frozen" shoulder for about the last 2 years I was there. I had no insurance because I had already gotten too ill to really work, my heart acted up some, the headaches were unbearable, I had chronic eye infections one after the other, my energy level was off (but it was like that throughout my adult life), and I was just not able to take the stress of a job. Then in 2003, in fact I was in the process of beginning a brand new job that morning in October, and I was so ill driving through down town rush hour Seattle traffic, I had to turn around, call my new job, and go directly to an "acute care clinic". I had DOUBLE pneumonia & WHOOPING COUGH! The doctors treated me at home, with several visits back and forth, and did their best to keep me out of the hospital, due to not having insurance. I was VERY lucky, but it took me over a month honestly to really get well. I went to work after about 10 days, but I will really still too sick to be there. Yet, I HAD to have that job, and did not want to Lose it before I even got there. Thus I went to work. The entire time of about a year there, I was ill constantly. Either a lung infections, eye infections, severe migraines, too fatigued to even get dressed, then my heart acted up. Jim and I were almost "brand new" in being together. We had only known one another about 4 months or so, when my heart had a "bump" in the road. I had an overnight stay in the hospital, and when I got out went by my work with a NOTE in hand... I was NOT able to work per the doctor for at least 3 to 5 days more. Well, basically, I was told I could "resign" or be terminated either one. I chose the first. I figured as soon as Jim found out, he would probably RUN! I would not blame anyone for running as far away from this "ill" woman as possible. We had already developed a special bond ( from the first date we always say), and not only did he stay, he was the one that was set on me NOT going for another job, and for me to try and find OUT WHY I WAS SO ILL. A few months later, my lease was up on my apartment, so I moved into a house with him and his good friend. It was big, and just the two of them. So, he basically took care of me financially, while I began getting medical assistance so I could be able to even go to a doctor. I finally did get some temporary WA state help medically with doctors, medications and so forth. They even helped me pay some of my gas to and from doctors, I got a tiny "stipend" monthly to help out with the bills, etc. Still no one could get it figured out. I was continually either in pain, or had a joints, more like joints acting up, or sickly off and on. So, after moving back here in 2005, I went to an orthopedic surgeon here in my home town, that was fairly new. He had done my Mom's carpal tunnel surgery about 9 months before I got back here, and still with no insurance, I knew there was probably little he could do. BUT, I had ALL of my medical records from the past like 10 years with me, and HE WAS AN ANGEL! The first visit, he and his assistant both conquered my right shoulder desperately needed surgery. Yet, several of my joints were showing that they were "wearing". You know he NEVER TOOK A DIME, for that first visit. He told me to save that money, and pay for a script he even wrote out for me for some Toradol, or some anti-inflammatory. Then he told me once insurance came in (he takes Medicare and their Advantage Plans) that we would be seeing each other for some work. Boy, was he ever right! In late 2006, I had been told my complete disability was given a "thumbs up". So, I would get my SS benefits and most of all MEDICARE! That mean shoulder surgery! So, in 2007, I actually had 7 surgeries on joints. I had MORE THAN one falling apart. STILL, no one could put two plus two together. I almost had honestly. I had already done so much research about all of my issues, illness, ongoing symptoms, the early onset of it all, and I really felt deep inside that I did have something like Lupus... etc. I went to a brand new family doctor when he first got to town in about late 2008/early 2009. After him seeing me several times over the course of a few months, he done extensive blood work. They took 17 VIALS of blood from me finally. He ran any and every type of test I think along the lines of autoimmune illnesses that were possible. Thus I came up with a "positive" on my ANA, and several of the other tests that gave me a pointer to autoimmune/Lupus/RA /MCTD etc. ONe that piece of the puzzle finally was put in. The rest is history.... many, many surgeries, illnesses, and an extreme amount of pain later... here I am... I have literally had to kick, scream, cry, make numerous visits, phone calls, different doctors, tests, blood work, to get to doctors that could PUT IT ALL TOGETHER! It took BOTH of us, taking things printed from online, from our own research, from almost "telling" doctors what we "felt" was wrong, to those who would listen and truly understand it all. So, no the journey to where I can "still stand for now" today has been a scratching, crawling, sliding down, and climbing up the mountain again experience. Jim has and still is a total Angel. He had to be sent by God, because I just do not see anyone on this Earth "staying" AND LOVING ME as bad as things can be physically for me at times. HE ALSO can relate because he deals with a great deal of chronic pain from lower back issues that they think he may have been born with. But, I KNOW that I am totally BLESSED, FORTUNATE TO HAVE HIM AND FAMILY, FRIENDS that try their best to surround me with love, hope and faith. They put up with my "fussing" and griping, and the times I am down and can't go and do things... he is more than a "trooper", for sure. (I am going to put another post and continue this one. It is getting too long... LOL!!!
Anyway, as far as the NOW situation, I FINALLY got to THINK things over yesterday morning, as I literally "hobble" around the driveway doing what really does NOT look like me walking, but I am STILL THERE, then watering my plants, and it HIT me after seeing my Orthopedic surgeon Friday what possibly is happening, and what possibly needs to be looked into. I have now became "broken" again, as I said to Jim... I had been "fixed" after getting back to TX. BUT, places that had not been messed up NOW ARE. like my hips, my thumb joints, my feet, my lower back.==, and elbows. My hips, elbow (L) and right elbow, along even with the left shoulder, have already either had a surgery or several rounds of injections over the years. It dawned on me HOW MUCH DAMAGE I had when I first GOT FIXED IN 2007/08 and even since then. BUT, now it has happened again. Those areas that have not been repaired or replaced are now in need of some help. Either injections, or some type of surgery, or replacement. It is the ONLY thing that makes total sense to me and Jim. Thus, I KNEW if I went back to my very FIRST ORTHOPEDIC surgeon last Friday, HE would be able to put new perspective on it all. My PCP, Pain doc... etc. have all been TOO close in it over this past 8 months or longer. They, like myself want to see it as an "all inclusive" Lupus, or some type of other AI illness thing. But, the pain is there, the evidence is there on tests, and my experience previously points right to the same. So, I did lots of research yesterday about doctors, my insurance and so forth. I made me a "list" of what is the WORST as far as pain etc NOW, and wrote it all down. Then I made a list of my doctors that I already have to see if THEY are the ones that need to possibly do the surgery (surgeries). Anyway, as far as the NOW situation, I FINALLY got to THINK things over yesterday morning, as I literally "hobble" around the driveway doing what really does NOT look like me walking, but I am STILL THERE, then watering my plants, and it HIT me after seeing my Orthopedic surgeon Friday what possibly is happening, and what possibly needs to be looked into. I have now became "broken" again, as I said to Jim... I had been "fixed" after getting back to TX. BUT, places that had not been messed up NOW ARE. like my hips, my thumb joints, my feet, my lower back.==, and elbows. My hips, elbow (L) and right elbow, along even with the left shoulder, have already either had a surgery or several rounds of injections over the years. It dawned on me HOW MUCH DAMAGE I had when I first GOT FIXED IN 2007/08 and even since then. BUT, now it has happened again. Those areas that have not been repaired or replaced are now in need of some help. Either injections, or some type of surgery, or replacement. It is the ONLY thing that makes total sense to me and Jim. Thus, I KNEW if I went back to my very FIRST ORTHOPEDIC surgeon last Friday, HE would be able to put new perspective on it all. My PCP, Pain doc... etc. have all been TOO close in it over this past 8 months or longer. They, like myself want to see it as an "all inclusive" Lupus, or some type of other AI illness thing. But, the pain is there, the evidence is there on tests, and my experience previously points right to the same. So, I did lots of research yesterday about doctors, my insurance and so forth. I made me a "list" of what is the WORST as far as pain etc NOW, and wrote it all down. Then I made a list of my doctors that I already have to see if THEY are the ones that need to possibly do the surgery (surgeries). Honestly, I have ONE Orthopedic specialist/genius that probably can do ALL OF IT, plus if it turned out my LOWER SPINE is the issue, he did my cervical spine also. He is the one that did my two most difficult surgeries, my neck and then the total reverse replacement shoulder on the right side. Those things are very "new" and cutting edge in many ways, as far as technology goes, and he KNOWS HIS STUFF! So, I THINK rather than going to several doctors due to having several issues, I am going to cross my fingers and that he still takes my insurance, and will see me. He had been splitting his time between two offices, thus I hope he is still at his original office next to the hospital where my pain doctor also is etc. I KNOW they take my insurance, and I have been in there numerous occasions. Thus, that makes sense to me. As far as a SURGEON, the man is a total GENIUS! As far as a "bed side manner", at first we had issues. He can be at times "egotistical" and of course you can't blame him BUT he also has issues with patients "knowing" things. HE DOES NOT like me going in there with all of my research etc... and then kind of "telling him" what I think is happening. Well, I can't blame him I guess. He is the one with the knowledge, the skill, the education, and I am the patient with my guesses, research, and known issues. So, at first we had a bit of a tiff honestly over me giving him more information that he really preferred to tell me instead. Yet, mmmmmmm, it turned out I was "right" more or less on both... so he and I began to suddenly get along better as far as bedside manner. I was told recently by me PCP that ALL SURGEONS can be HORSES butts! That is their nature!!! LOL!!! Which is NOT true. I have several that are the best ever at how they treat the patient as far as their personality. Many also LIKE A PATIENT to kind of be educated as to what might be happening. So, I am in the process of trying to decide where to start, and whether to go to him "can fix everything" shop, or do I find local foot docs, hip doc, elbow and hand doc. I know as far as the hand/wrist, and if my lower back is with issues, and even the elbows will need Dallas doctors anyway. I know local doctors as far as my toe thing (tarsus tunnel) probably, and IF the HIPS need something that can be done here by my orthopedic doctor I saw Friday. But, the other stuff is way too highly specialized and we do not have those specialists here yet. In between all of this, I DID MAKE my DENTIST appts. I have several teeth issues that NEED REPAIR! I know if ANY procedures will need to be done, where I am put to sleep, they PREFER things like that fixed first. So, fortunately I had already made two appointments for a week from this one to get most of that done. Alas... here we are ... and possibly here we go... I have ONE MAIN ISSUE... WELL I GUESS A COUPLE... COMING UP END OF THE YEAR AND MEDICARE for 2014! & what my MEDICARE ADVANTAGE INSURANCE PLAN will go up on, change, doctors that may not take it and so forth... so TIME is not on my side IF SURGERIES need to be done. I prefer any of that IF POSSIBLE done BEFORE A NEW MEDICARE YEAR. It is either that OR WE DO HAVE SOMETHING NEW that is going on and it is just not BEEN FOUND YET! And then if the first is not the case, then am I facing a wheelchair, cane, etc... that is not as bad as facing the DAILY REST OF MY LIFE... UNBELIEVABLE PAIN... I CAN FACE TEMPORARY ACUTE PAIN FROM SURGERY.. I know that will "end"... it is truly temporary, BUT LONG TERM CHRONIC PAIN... is an unknown from one minute to the next... so PRAY FOR ME!!! Please... that some of this IS THE ISSUE, AND IF SO, MUCH OF I CAN BE FIXED... :) we shall see what this week holds. I see my pain doctor tomorrow to refill my pump. I am going to ask him about going ahead with the lower spine medication injections. He already talked about them a couple of weeks ago... thus I am sure he will be game for that for sure...
Written by Rhia Steele