Shelly M’s Rheumatoid Arthritis story
Sandi’s Rheumatoid Arthritis story
Sherry T’s Rheumatoid Arthritis story
This is Shelly M’s onset of Rheumatoid disease story, in her own words.
Thank you Kelly for this great opportunity. RAD is an invisible, cruel disease that steals from us not only physically …but psychologically as well. The more we get the word out about this …the faster they will find a cure. Plus, you feel less alone when you know there are others.
I cannot pinpoint a time when I did NOT have joint pain. My jaws have always clicked; my knees and ankles have always hurt when it would rain. As a little girl my mother would wrap my knees with hot towels because they would hurt so badly. I remember her taking me to the doctor…and being told that my chronic pain was merely “growing pains.” To me, pain like this was normal, since it was all I had ever really known. All knees hurt, because my knees had always hurt! When I went into basic training at Fort Jackson, SC I developed extreme knee swelling and pain. My right knee was huge and I had a horrible limp all through basic training and into AIT training. I went to the TMC, was put on Motrin, told that it was mind over matter…and off I went. I ran on the knee and did everything else because I was told to do so.
While stationed at Fort Polk, La. and in Germany, same issues. Over and over, tendonitis. First my knees, then my ankles…tendonitis. I thought well, we run every day. We march. This is just normal stuff. Kept going. I have had clicking jaws as long as I can remember, to the point where my friends tease me about them. Around 1999 I started having horrific migraine headaches and neck and arm pain. NTI device was made and kept going. In 2006 I was having horrible upper back/neck pain. Went to an orthopedic doctor, he said my C1/C2 nerves were causing the arm “referred” pain. Still, it just never occurred to me that my pain was coming from somewhere other than normal aging …again, since it had always hurt …it was all I had ever known. In the fall of 2010 I started having symptoms of being sick. Dramatic weight loss, unexplained fevers, extreme fatigue …and incredibly bad anemia. Received 2 blood transfusions and an iron infusion…and saw a hematologist.
I ended up in the emergency room of Central Texas Medical Center, thinking I had appendicitis. The doctor said yes, you may have appendicitis …let’s do a CT scan. Well…the CT scan showed a healthy appendix, but also showed lymphoma. I then entered the phase of my life called cancer. Endured 6 months of chemotherapy, and entered into remission on October 20, 2011. During chemo I had horrible issues which we now believe were actually RAD flare-ups and not a result of the chemo (which is what we initially blamed) …horrible knee pain, swollen feet and ankles that I lovingly called my Fred Flintstone feet. Once the steroids were stopped after chemo …well, that’s when the fun began.
I went from pain to being in absolute, unadulterated agony. My husband would literally have to push me out of the bed because I could not move. Initially this was attributed to my body readjusting from chemo and possible nerve damage. Pain continued …continued …eventually my oncologist decided that this was not due to my cancer treatment, that this was out of his scope of practice …and off to the rheumatologist I went. From there we did testing and it was decided that I have rheumatoid autoimmune disease. It has been quite a journey. I may have a “new normal”…but I am determined that this new normal will be one filled with happiness and optimism.
This is Sandi’s onset of Rheumatoid disease story, in her own words.
Dear Kelly I came across your site and thought I would share my story with you, thanks for bringing so much awareness and education to the issue of RA.
May 2007, in the hospital with encephalitis meningitis, no idea where I picked up this bug. After coming home I began to notice some stiffness and pain in my right thumb, it progressed to my fingers then moved to my left hand. My feet started to feel numb and tender by July.
September 2007 – Difficulty walking, doing up buttons, squeezing and grasping things, my body was moving slower and slower, the pain was horrible, I needed constant help with everyday tasks.
Oct 2007 – Diagnosed with Rheumatoid Arthritis, what,, I was only 42, called the arthritis society, I was in denial, sad, depressed and completely frustrated that I needed help to brush my hair, I couldn’t hold a toothbrush, my children had to put on my socks for me and tie up my shoes, I cried a lot, alone.
November 2007 – Went and seen a specialist who told me my RA was pretty sever and started me on a course of methotrexate, Plaquenil, prednisone and folic acid, eye test, blood test, x-rays to follow, told me I had to have my eyes checked every 6 month to make sure the Plaquenil wasn’t causing me to go blind, oh great another wonderful side effect, Sundays were the worse because I had to take the methotrexate and I knew for the next two days I would be sick and in bed, I cried, alone.
December 2007 – RA improved significantly, I was cured, or so I thought.
Jan 2008 – Bad reaction to the methotrexate, besides I was feeling so much better I went off all medications. My throat swelled and feeling so tired, looking like I had been on a drunken binge for weeks, they sent me for what they called a swallow test, my dear freaking god it was the most disgusting thing ever, swallowing this pasty thick chalk, gagging, the tech telling me not to throw up hold it down, just a few more xrays and were done, was she kidding, I wanted to take that shit and ram it down her throat and tell her not to puke.
Feb 2008 – The pain started to come back, my hands, my feet, my shoulders, my knees, some days it hurt to breath, I was quiet a lot, not just because I was thinking, but because it took much energy to talk, I smiled a lot, so no one knew how much pain I was in, then I cried a night alone for the next few years I suffered, too afraid to trying medications again, I treated my RA with 1200 mg of Ibuprofen, putting the pills in my mouth 2 or 3 times a day, knowing each time I did I was risking blowing a hole in my stomach and bleeding to death, can we say desperate.
Skipping ahead to 2011, the pain was intense, it never let up, at times it was like someone was standing over me beating my legs with a baseball bat, walking down the stairs I was afraid my ankles would crumble, so I opted some days to come down the stairs on my butt like a crippled up old women, pissed off, angry and disgusted with what my body was doing to me.
Fear prevented me from going back to the doctor, but that fear would soon be about not going to the doctor. The laundry was piling up downstairs, I had to get it done, single mom of 6 there was a lot of laundry, but a few trips up and down resulted in two days of incredible indescribable pain, the thoughts of having a shower, washing my hair, drying my hair, putting on mascara, it all took a lot of energy, caused more pain then you can imagine, I put it off for as long as I could, days would go by, I wouldn’t leave my house, I wouldn’t answer the door, I didn’t want anyone to see me like this, there were days when the pain was manageable, and being stubborn and stupid I would do it all in one day, clean the house, do the laundry, shower , get dress, cook, then came the crash, again, I couldn’t sleep, the pain would wake me up, laying on the right side, it hurt, trying to roll over to the left, OMG, the pain, the burning aching pain, please just let me find a way to lay that it doesn’t hurt, I cried a lot, I slept with my door closed so the kids wouldn’t hear me, more Advil, even though it wasn’t working, so I added 1000 mg of Tylenol to the mix, it didn’t work.
I stopped hanging out with friends, I stopped dancing, I stopped a lot of things, I didn’t go out because I didn’t want anyone to see the damage in my hands, the lumps, the bumps, the swelling, besides it took way to much energy to get ready, my feet were so bad I could no longer wear shoes for any period of time. I walked with a limp, my hips twisted when I took a step just to be able to endure the pain I felt with every step, my left foot swelled, bad, the toes began to turn black and I was losing the sensation in the foot, it was cold all the time, when I would get into a warm bath the bottom of my feet would turn black, the blood pooling in the bottoms of my feet, the swelling was so bad it was cutting off the circulation, my right elbow developed a large lump, it began to hurt when I drove, I couldn’t rest it on the arm rest anymore, my hands would cramp up around the steering wheel, it hurt to walk to my van, now it hurt to drive it, what the hell was I gonna do.
My mother came with me to shop for groceries, many things I could not pull off the shelf, cans of soup, sugar, potatoes, almost everything I tried to pick up hurt and hurt like hell, even grabbing a loaf of bread would send a stab of pain from my finger tips all the way to my shoulder, like I had taken a bad electric shock on the end of a hot red knife, then came the packing up of the groceries, not, packing was so hard, people in line would look at me when I tried to pick things up and kept dropping them, I’m sure they though I was a complete and utter jerk when I had to have my 72 year old mother lift the bad of dog food or potatoes into the cart, but what they didn’t understand was , I simply couldn’t lift it, I was embarrassed and so ashamed with my legs getting worse, my hips hurting I could no longer stand long enough to even do my shopping, I had to give my mom and my daughter a list of things while I sat in the van and waited.
My neighbours began to see my struggle to walk down my steps, they asked what was wrong, so I told them, the look of pity was almost worse then the pain, I was 46 years old and had the body of a 90 year old, each step required a deep breath, hold it, step, deep breath, hold it, step. I felt like the jerk mother in the neighbourhood, always calling on my kids to come inside to help me open a lid, or reach for the sugar, help me, I cried alone, then I lost it, I called my mom I cried, I just couldn’t take it anymore, I felt so damn sad, barely getting the words out I said mom, what am I gonna do, I can’t do anything for myself, @$*%!, wiping my own butt hurts, sorry don’t mean to be graphic, but its the truth and those that have RA completely get what I’m saying.
Skipping forward to May 2012 – My Fear of Meds: That began to change, I was now more afraid of what would eventually happen to me, to my kids, our life, I called the doctor.
She was pissed, man did I get a blast of $#@* that day, but in away that was full of care and worry, she told me there wasn’t a joint in my body that wasn’t inflamed, that the risk of this hitting my heart was more then a possibility, that with-in two years my hands would be so damaged there would be no return of function, I was facing a life in a wheelchair, completely and utterly dependent and disabled, holding back my fears and tears I asked her what now.
May 30th – I have begun a new course of medications, Arava, Plaquenil, prednisone, meloxicam, so far feeling no side effects, of course
June 1st – Found out there was a walk to fight arthritis June 10th, I can’t tell you what happen next but it was if, I had surrendered, given in and accepted what I have, the sadness lifted, replaced by determination to fight and deal with this with grace and dignity, no more pity pot, no more isolation, no more crying alone.
I joined a team, I asked for help, I began to share what I was going through, what happen next surprised and inspired me, people began to sponsor my walk people I hardly new began to help, and with in 3 days I was sponsored for almost $500.00, I am blessed, I cried, but not alone.
I am planning on doing the 1km walk and next year my goal is the 5 km walk, I have asked people to donate old chairs so I can paint them to create garden chairs which I will auction off next year to raise even more money, I have a thousand ideas swimming in my head to raise even more next year.
I began to talk about RA and all that was involved, and most do not understand that this is not an old persons disease, I posted videos on Facebook about the children who suffer from JRA, many had no idea how serious, painful and debilitating this can be, nor did they understand how important the Arthritis Society is and all the wonderful amazing work they do, but their beginning too.
June 8th – Woke up this morning, feeling sick to my stomach, medications are having some side effects, dizzy a lot of the time, but the swelling in my foot has all but gone, thanks to the steroid shot I had,, my feet are still tender but at least I can put my shoes on, my hands still hurt a lot and when I type I hit the wrong keys a lot because my fingers are tight and stiff and bent, they hurt a lot, even tweezing my eyebrows sets my hands on fire, my stomach feels like its empty most of the time and last night I had some pain and nausea , although I did manage to keep the medications down.
I am off to pick up a few chairs this morning, I will have to take my daughter with me in order to get them in the van, I hope in time my hands will improve so I can get started on my creations, and have already been offered a $1000.00 donation from a business for one of my chairs, she is getting two lol. I guess I miss that more then anything, the ability to just do what you want when you want, I have to wait for good days, right now I don’t have good days as far as pain goes but I have good days about my life and what I plan on doing with it, its amazing to have a plan, to hope for good things, that’s where I’m at today, July 4th I begin some computer training, come September I will be taking a training course for the VON, to volunteer for their bereavement program for those in palliative care or people facing a life threatening illness, eventually I hope to become a bereavement counselor I don’t know what tomorrow will bring, but we shall see.
This is Sherry T’s onset of Rheumatoid disease story, in her own words.
My name is Sherry. I am 52 years old. As I was reading over some of the onset stories, I saw myself in several of them. Except for the fact that I did not have a “diagnosis” as such, yet.
In April of this year (2012), I noticed my knees were achy and grinding a bit. I put it down to just getting old! But then my left thumb started to hurt too. And swell! What the…!
Around midnight, my hand hurt so badly, it was swollen, hot to the touch and turning a bit blue. I got out of bed and took myself to the local ER. As I was still signing in, the on-call physician walked over and took a look at my hand and said that I must have sprained it. I said that I had not, that this had been coming on for a day or two. He nodded dismissively.
I was put in a room, (never saw Dr. Feelgood again) and was summarily dismissed with a couple of hydrocodone tablets and a prescription for the same. This was a Friday night.
The following morning, meaning 5 or so hours later, my bladder awakened me from my drug-induced “coma.” I swung my legs off of the bed, and fell promptly to the floor. The pain in my knees was excruciating!
I pulled myself back up with great effort, no longer needing to relieve myself, having done so on the climb back up Mt. Bedside. That day and the next were unbearable! If I sat, I could not get back up. If I went to the bathroom, my husband had to accompany me, for the same reason.
On Monday, I called the family doctor and got in to see his nurse practitioner. Just the walk into the office exhausted me, but I didn’t dare sit. The thought of getting back up didn’t bear thinking about! I leaned against the wall until my name was called.
The nurse was sympathetic and caring. She needed blood tests, so I was sent over to the hospital to the lab…. more walking. Yea!
I get to the lab, but I was given the wrong page of paperwork, so I had to go back to Admissions to get the right one. Oh, and sorry, no wheelchairs were available right now. By now, I am barely holding back the tears!
With great difficulty, I make it home to a chair with sofa cushions stacked, (so I might be able to get back up eventually) and fall into an exhausted, weepy, and uncomfortable sleep.
Three days pass before I get lab results …inconclusive. But the NP would like for me to see a rheumatologist for the knee problems. She would let me know what she could find out. So, now I am on hold …great.
Hubby returns from the pharmacy on Thursday with a raised toilet seat and a walker. Now I’m feeling like a winner, right?
On Friday, I still had heard nothing from my doctor’s office, and was getting no response to my calls. I was discouraged, and upset. My pain levels were still the same, my legs refused to work, and frankly…I was ticked! I sat and wrote a letter to my doctor and the NP detailing my day. In short, get up, bathroom, sit in chair, take pain meds, dread the next time I have to go back to bathroom, bathroom, more pain meds, bed. I had no life anymore, in less than a week’s time. I was begging for help now.
I mailed that letter. I still have yet to hear a possible diagnosis of RA or anything else, but because of the letter, my doctor put me on methotrexate 3 times a week and a prednisone taper. I felt relief for the first time after 2 tablets!
The next week, I got a call that I had caught a cancellation at the nearest rheumatologist’s office. Hallelujah! Finally! Feeling optimistic, off I go!
But Dr. Doorknob was no better than the ER guy! He came in, asked me like 3 questions, did a very cursory exam, then sat with his laptop. He told me that it was probably just osteoarthritis, to get off of the pain meds and the prednisone and just take ibuprofen 200mg., and call him at the end of the week if my knee (singular) wasn’t better. Seriously?? Take 2 aspirin and call me in the morning??
I told my PCP that I would not go back to this man, so we are actively looking for another. My doctor has increased the methotrexate to 5 times a week now.