Disclaimer: The views and opinions expressed in this publication are the views of the author and are not associated with publications created or developed by the International Foundation for Autoimmune Arthritis.
by Rhia Steele
When Words Just Don’t “tell” the Tale of an Autoimmune Arthritic Riddled Life…
Here is a more “detailed” look into a Lupus/RA/Autoimmune patients life. You never know from one moment to the next what might happen. Some things are just life and they happen. But, as you read below, you will know why I feel a steam roller; rolled back and forth over me at times…
I am not sure where to begin. I know some people were already aware of all the stressful medical circumstances that had gone on with me at the beginning of 2013. I had been in almost intractable pain, in Mid-January, then AGAIN a 2nd time in April 2013. To this moment, the doctors have not yet found out what is or was wrong. One thought it was the RA/Lupus. (I was in a MAJOR FLARE at the time). The other doctor thought it was the joints in my hips; along with X-rays showing my toes and thumbs are extremely degenerated causing the pain. I had both hips injected in early February 2013, just “in case” that was the issue. Another ONE of my several physicians thought it is was combination of recently finding out I was and still stay very low on B-12 due to having (pernicious anemia). By the way, that is also an autoimmune disease, for those who may not know. There is a certain “factor” that the stomach makes called the “intrinsic factor” and it helps to make B-12 in our bodies absorb it. Those of us without that factor must supplement ourselves with B-12 injections and pills so we can have enough. I just began taking the monthly injections and sublingual daily pills… and will have to forever. Then the real kicker, is due to the osteoporosis, my pain specialist, along with myself honestly, think I may have had and still could possibly have a compression fracture(s) in my lower lumbar spine. Much of the severest part of the pain goes from my hips, down my legs, straight down into my heels when”this” whatever it is comes on. The are several other things that probably at that time and could still (more like when) this “event” happens contributing, such as the myoglobin being high. Serum myoglobin shows up when “muscle” damage occurs. That one factor in itself is known to cause horrible muscle pain (thus muscle itself begins to die, it those cells go into the blood stream, and can “hang”, almost like a blood clot of sorts), but they can “hang” in the kidney rather than elsewhere in the body, so you can have kidney failure if the myoglobin is in your blood. this can happen from “larger skeletal muscles or the heart muscle also causes this to appear when a heart attack happens.) We basically unless there is a medical reason, such as a huge trauma to muscles, some medications, and so on, are known to cause myoglobin to be in the blood. The severe pain in my legs, could very well be due to the “muscle destruction”, thus he felt that could have been a factor. The fact that I was on a muscle relaxer than sometimes can cause this, along with a statin I was being given to “protect” my heart from a possible further heart attack, both could cause an abnormal myoglobin factor to show up.
If that were not enough to send anyone running for the guys with the “white jackets” and the “locked wagon”; I began to have teeth just practically falling out of my mouth. I had already had at that time went in to my dentist (that by the way has osteoarthritis so badly, many procedures he cannot do because of the severity of the OA in his hands) but he was able to do some what he called “patching up” on my upper front teeth, and now one of those, plus yet another top front tooth that had a small chunk out of it. Then, about that same time, I had TWO, upper molars, both the same tooth on opposite sides, that within a week, both had an entire half of the tooth each disappear (I figure I swallowed them)! So, neither of those could be salvaged, thus they had to be extracted. Before I could even get those two removed, I found another cavity that at least could be “saved” (actually temporarily because it was too deep for a permanent metal filling) in a bottom molar just a week after the other two were pulled. To top this off, my husband had to have a tooth pulled, and neither of us has dental insurance. The dental bills were adding up quickly. If that was not enough to send me screaming into the hills and valleys; I had to have the pain pump refilled very early, due to the hospitals screw up! I had to PAY 2 co-pays within 3 weeks of each other! The hospital “lacked” enough medication that goes into my pump. thus I got about 3 weeks worth, and I should have been good for about 3 MONTHS before it needing a refill. Even though it was the hospital’s issue, guess who had to pay the “co-pay” again; when I had just paid one 3 weeks before. At the same time, I was facing lumbar steroidal injections, within the same week. We BOTH just had to have new glasses. Of course mine had to have “prisms” in them due to the “double vision” they have yet to figure out and my husband is “legally” blind without his glasses on, thus both pair were expensive even though we ordered them online. My husband has to pay cash very other month to continue to get his medications, which was bad enough. Then the visit he went to about the time all of this was going on suddenly the doctor decided to do some kind of “new” blood work. The told him it would be $100.00 for him to pay. Well ONLY $100.00 that is LOTS of money to us. The guilt for me at that time was piling up.I had not been able to get out of the house much at all. The heat made it all of my symptoms worse, and it being the middle of August, was of course the hottest part of the Summer! (about now you are thinking gosh that has to be the end of the “tragedy”)… Oh, no! Then to top things off about a week later, I woke up very hoarse. My throat really was not sore or bothering me, yet I just almost had laryngitis. Well, that rocked along for a day or two, and it seemed to be getting worse, and certainly not showing signs of cleaning up on its own. That Sunday evening or early Monday, the real fun began. My throat got SO SORE, including every part of my tongue, under and on it… the roof of my mouth was totally covered and looked like it is going to bleed, and in the back of my throat, I got this white gunk, and was unable to utter a word. I can BARELY get a whisper out. IN all of this, I was using the “arsenal” of everything I had. First, I took antibiotics that I was given about 4 weeks. They had me on them, then said to get back off them when they found the B-12 anemia. Thus, I had 4 days of them left. So, I started popping them as directed, gargling with warm salt water as much as I could stand, putting peroxide in my mouth, and even dug out a bottle of “magic mouth wash” that is a script you use for thrush, a sore mouth, ulcers in the mouth and throat etc.. It has a couple of things in it to help heal and also numb the areas. So, I began using it, plus called for refills on it. I had refills but they had expired of of course. Well, I had known something was still very wrong. The mess in my mouth seemed worse. It dawned on me after all of the antibiotics lately I probably have thrush. I have had it on several occasions and it needs of course Nystatin rinse, then my doctor gives me a straight oral lidocaine that is MUCH stronger than anything else. So, I call (and get my husband to talk for me) to tell our doctors office EITHER I need a “sick visit”), which would have been Thursday or Friday, OR if my doctor wanted to; since I felt too lousy to come in could be so kind to just call in the medications he always uses for this. Well, they tell my husband that he has no appointments available. But the woman on the phone was NOT getting the fact that I would see one of the PA’s. I did not have to see the main doctor, I just needed medication. I also told her to please ask him to call in some Nystatin rinse, but I forgot to mention the Diflucan and the lidocaine rinse. Well, heck of course they “missed” the boat on that one. He KNEW I probably had thrush. He also knew my immune system is SO messed up right then, me coming in to an office full of other sick people was probably not the best idea. Plus, I already have 2 of the dental appointments set up. The first one, coming up a couple of days from then. At that time we thought I might be having the lumbar injections, and another dentist appointment on the in another week. Then I had my appointment to see my Rheumatologist finally within the next few days. So, I needed to get my mouth and throat well. The dentist I know would NOT touch me until my mouth was better. So, I Call my Primary Care Doctor in desperation that Friday, to let him know EXACTLY what the “usual” meds (all of them) are, spelling them to her( the nurse) etc… They close at NOON on Fridays, SO I desperately needed to know if I was going to be asked to make a trip there or not.. Probably not, I thought. For one they must have had everyone in Ennis sick or something. It was almost like they did not even have any of their “sick” appointments they keep daily for someone such as I that need to be seen but the that the PA’s usually do; taking care of me for the most part. Well, I did NOT hear back from them BEFORE NOON! Now I knew on Fridays they were in the office, but they did not take in patients on Friday afternoons. So, it could be that he was going to call all of the stuff in after he was settled after seeing patients. Yet by now, I was in tears and told my husband, that if my PCP did not call something in, even though how much I am totally DO NOT to go to the ER, the possibility was we MUST go to the ER! I CANNOT physically afford to be very ill with an infection, thrush, and whatever see was going on with me. I could get extremely ill quickly. So, LUCKILY, we had out contention plan ready. Supposedly we have a new clinic here in my home town that takes walk ins and they were supposed to be open on weekends… you don’t need an appointment etc… if they were not available and I was NO better, then we would do the dirty deed of ER. I NEEDED those meds. Well, finally about 3:30 my docs offices calls. The woman says “okay, he said he sent in both scripts to your pharmacy. I was so thrilled, other than I knew we had been having huge issues with the PCP emailing/sending scripts electronically to our pharmacies especially mine. So I hurriedly called the pharmacy, to find out if those scripts did arrive for filling. Well, that part was at least not a huge ordeal. But, my throat STILL felt like I swallowed razor blades. It was not any better as far as my voice. In fact earlier it was worse. I couldn’t utter a word. But, I did get the Diflucan script, along with the Nystatin and the lidocaine to numb it. Now, this is late September of so of 2013, and I and already been back to the dentist to have several more teeth “patched”. I also find out that just about every tooth in my mouth is suddenly full of “cavities”. I don’t even like to speak about it, but due to the very LONG time it took to diagnose me with the Sjögren’s;, along with the other autoimmune arthritis illnesses, now my teeth were already “shot”. I will be eating or drinking something, and either “feel” a piece of tooth in my mouth or feel a spot where a piece is suddenly missing. Basically my teeth are just crumbling, breaking off suddenly, and I “may” have one on the left side get a “gap” in it, and within days the EXACT same tooth on the other side will do the same thing. Just like RA where it effects “joints” often times on both sides, the Sjögren’s effects my teeth much the same way. I have also found out, that everything I’ve tried to do to “protect” the teeth I have, were all the right things to do. But, too little, and honestly too late. Not one doctor, other than my PCP, who actually treats the ulcers, thrush and so forth, has ever spoken to me about my teeth, and how we might preserve them. I was actually the one that brought up taking on the the two medications that have to help with the lack of saliva. I am currently on Pilocarpine, as well as chew gun with Xylitol in it, but there is little that can be done due to them already being not treated years ago. Yet, without at least sipping on something constantly, or having a piece of gum in my mouth, it gets so extremely dry that I cannot even talk, swallow, or do a thing that involves taking a pill for sure.
I did speak to the dentist that did my extractions, because he seemed to know more about Sjögren’s. He told me I was doing all of the right things, it was just way too late in diagnosing me so I would have gotten on medication much sooner I may not have my teeth literally deteriorating more day by day.
Of course there is also the situation as to why suddenly I am “plagued” with “double vision”. That started about 4 months or so after all of the “severe” muscle pain. By the way, they NEVER did figure out WHY in mid January 2013, I began having such severe pain; more what I would refer to as “intractable” pain. There is nothing I could do to relieve it. I waited weeks before going into my pain specialist, just do to all of the things like the “myoglobin” making my muscles begin to deteriorate. Then they sent me to several neurologists, that did EMG’s, Nerve Conduction Studies, I had a CT scan of my lumbar spine. It went on and on. I finally walked into my Pain doctor’s office and told him I would sit in his floor and scream, because it seemed I could not get any RELIEF! He was the one that wanted to do the lumbar injections, but my insurance of course decided since several years before I had them done and they did not help. Thus, we were almost ready to have me put under and they were going to do an “exploratory” surgery around my spine, around where the tubing from my pain pump ran into my spinal fluid, check out my vertebra, to see if maybe I did have compression fractures, that they would not see on a CT Scan. And due to my pain pump, I cannot have any type of MRI whatsoever. At that time, I went on a higher dose of a different “oral” pain medication (incidentally I really DID NOT want to do), but he had to get the pain under control some how. With the “added” medication it seemed to disappear as suddenly is it came on. But, that still was not an answer to “why” it happened in the first place!
Then the next time I was to have the pump filled in about mid-April, I had a 2nd “attack” of the exact same thing. I woke up one morning, with so much excruciating pain, I did not think I could even try to live through the day. One Neurologist said it was “peripheral neuropathy”, one said I may have Myasthenia Gravis (another autoimmune disease), another said it could be Multiple Sclerosis. Others said it was the RA attacking the bottoms of my feet. But, that did not explain, the horrible acute pain from my waistline down both legs, that not one doctor out of the at least 7 or more I saw ever made sense of it. The best answer I got, was, you know, we are just not sure. Well about 6 or 7 weeks later, after again a small upping of my oral pain medication dosage it left, as quickly as it had came. It did that both times. Even now, though it has been about 5 months since it happened the last time, a piece of me wakes up in fear every morning. Since it came, no one could find a good explanation, and then it left, and still no “real” legitimate reason, other than “Lupus and RA” can cause ALL types of strange symptoms. How well do I know that. As in the double vision. Like my teeth suddenly just falling to pieces, or several years back, when one Sunday morning, I began to “move”, I mean “physically” move, and I was not doing it. I still to this day, if I get where there is a ceiling fan, or the noise from something like a fan outside for an air conditioning unit, or any type of sound that makes the same sound over and over again, I will literally catch myself “moving”…. if I am sitting down, I will literally “gyrate” sitting down, just like I was trying to move to the music. But, I am not doing it. The first time it happened, it frightened me and my husband so badly, we drove like mad people to the ER. We thought I had possibly had a stroke or something.
Again, no explanation as to why. But, as long as I take my Meclizine and Diazepam, it stays for the most part under control. If I get very upset or nervous it will try to happen.
In my gut, in my heart, in my mind, and in my soul, I carry this “torch” daily. I’ve tried everyday and “everyday but Sunday”, as the saying goes to MAKE A DIFFERENCE! From signing petitions, to joining different groups, to writing letter after letter to my Senators, Congressional Leaders, even the President, I’ve been blogging for years, had my own groups, told my story I can’t tell you how many times, to just about anyone who will stand still long enough, or read long enough to get she I am coming from. I’ve went through doctor after doctor, specialists, from Orthopedic Surgeons, to Neuro-Ophthalmologists. Hematologists, ENT Doctors, Neurologists, and I can’t even remember the number of Rheumatologists that I just almost had to get up and walk out during “their” line of bull they tried to feed me. I’ve been through a number of specialists in the Methodist Hospital in Dallas, that honestly, they were gastroenterologists, that saved my life, literally. That is another story for another post. But, in 2010, after over 6 weeks in two hospitals, and my doctors NOT thinking I would never come out of that hospital alive. But, I am alive to write about it. I have had so many surgeries, I believe I’ve lost count honestly. Just the joint surgeries, and then joint replacements add up to at least 12 if I am remembering correctly. In 2007, we counted 8 surgeries in that one year alone. After that, it got to where some of it is just a haze. The brain fog in some ways is a blessing. That sounds terrible, but for me it is true. I think if I could remember all the details of everything that I’ve been through in the past 10 years, I honestly may just go off the “deep end” of the black darkness of the waters below, if I could truly recall it all.
As I close this for now, I want to say, I truly know I am certainly NOT the only one who trudges daily through this “life”, thinking I am the only person, who has ever been through all of this garbage. There are people are there, that have seen a great deal more suffering and been through a great deal that I have.
But, there are those out there that just find my story, as well as many of our stories just totally unbelievable.
That is what keeps me going. That is what drives me to get up each morning, and “work” through the pain. Knowing as long as I make every moment of my time I can being a “voice”, a Health Activist, giving of my time knowing that what I bring to the table makes us get heard by those that need to hear us. As I’ve said all my life, I was put here to “help”out through my writing, through all I can do to help lead us down a new path through the rough and rocky roads of Autoimmune Arthritis Diseases. It is a new dawn for us as patients! We can now speak our minds, and tell what is coming to be the time when Patients, Researchers, Doctors, Medical Professionals, & Global Alliances come together to bring a new “Tomorrow” to the Autoimmune Arthritis World! We shall be the winners.
Rhia Steele © 2/4/2014