How about if we start out with an introduction (always a good beginning, am I right?). I’m Lisa. My life as a Midwestern girl and then woman, wife and then single Mom, sports car owner to crossover mini-van driver has been great, but maybe not so unique.
BD (or before diagnosis) I had two small boys, a job and I was pursuing my PhD. I also had a terrible limp, which caused a lot of pain. I went to see a couple of different doctors, had some treatments that did no good (they were excellent at lightening my wallet though), before the doctors decided I needed a hip replacement. All that limping had ruined my joint. A new hip, and I’d be as good as new! I was 46 and getting full joint replacement.
Surgery went well (I had a great surgeon) and recovery started fabulously. Then, about 4 weeks in, everything started to hurt. My new hip worked well, but everything else was breaking down. Around 5 weeks in, my knees became contracted (I couldn’t straighten them out any more, and I couldn’t bend them all the way either). I couldn’t straighten out my elbows all the way. The pain in my body was worse than before the surgery. (I know now that I was in a full rheumatoid flare, but back then I had no idea what was happening.) My surgeon was stumped.
He did more x-rays. So much joint damage in a lady so young, he said as he shook his head. He sent me to a rheumatologist. I asked my friends and found one who came with a good reputation. We’ll call him Dr. Jerkyl. I sat on his exam room table and waited for nearly an hour (at a 9:30 AM appointment). I told him about how I couldn’t move very well, had constant pain, couldn’t go back to work or school. I told him about being a single Mom, in need of income. I should have become suspicious when he asked why I divorced my ex, but being a trusting sort, I simply answered that he was emotionally and verbally abusive. Dr. Jerkyl crossed his arms and said, “Sounds to me like you make terrible life choices.” He then went on to berate me for waiting so long to see a rheumatologist. After I explained that I had only just been referred to one, he told me I was much too smart not to know that I needed to see one with or without a referral. He told me it was my own fault I had so much pain and rheumatoid disease. He was mean. I started to cry. He actually smirked and asked if I was crying so he’d feel sorry for me. He carried on berating me for my “bad choices.” I told him I couldn’t change the past. I was here now and wanted to begin from that day to learn what I had and what to do for it. Dr. Jerkyl then informed me that he did not want me for a patient. He handed me 3 names of other rheumatologists and asked me to leave. I couldn’t believe what had just happened. A doctor my friends respected and recommended had just humiliated and blamed me for everything. I sat on a bench near the bathroom in the hall outside his office and called my sister. I started crying again. Dr. Jerkyl walked by to use the restroom and actually laughed when he saw me. I fled to my car.
That’s how I found out that I had rheumatoid disease, but I still wasn’t sure what it was or what to do about it. Dr. Jerkyl had given me a prescription for an anti-inflammatory, guilt and a lot of fear. Luckily, he also gave me the name of another doctor, lets call him Dr. Dreamy, not because he is handsome (he’s nice looking, but not Patrick Dempsey… then again who is?), but because he’s a wonderful rheumatologist with a kind bedside manner. When I told him what happened, he laughed and said “I hope that guy has severe consequences for every bad life decision he has ever made. Also, you cannot give yourself rheumatoid arthritis.” I knew then that I had a good doctor and an ally.
Dr. Dreamy started me on an aggressive regimen of drugs. I had now been out of work for 8 months from a surgery with a 6-8 week recovery time. I tried to go back, but the doctor appointments, side-effects from the medications and weakened immune system kept getting in the way. After a couple of months back, it was clear to everyone, this wasn’t working out. I talked to Dr. Dreamy, who responded “Why haven’t you applied for disability yet?” Welllllll…. I didn’t know I was that bad.
My GP, Dr. Dreamy and my surgeon agreed. I needed to stop working. Great, I thought, are you going to support me? So while I applied for federal disability (with amazing help from Jewish Family Services), we lived on child support, charity, generosity from friends, a wing and a prayer. It was rough. It took about 8 months from when I quit my job to when the application was approved. I have been on disability now for 3 years. (My ex tells me I am a succubus abusing the teat of a welfare country… seriously, he said that.)
I’ve learned a lot about my disease. The most helpful place on the web was RAWarrior.com. Kelly is fabulous. Whether you are a patient or love one, she has scads of information you need. I’ve learned a lot about my limitations. I’ve learned a lot about joint replacement (I have a fully bionic pelvis now and am going for bionic knees soon). And I’ve learned that laughter and joy are the best options.
Welcome to my rheum. Tell me about you if you want in the comments. All I ask is no profanity or spamming. I’ll delete any comments of this nature.
Lisa, All I can say is ouch! No one should ever have to go through what you did. Certainly not in this day and age when we have some understanding of autoimmune syndromes.
Lisa, I so enjoyed reading your blog this evening. I learned a lot about you and your disease. I’m looking forward to your next posting.
If you send me the name of the beast Dr. who treated you so poorly, I’ll call Guido so he can break his kneecap. Just joking of course… but I certainly hope at some point he has time to reflect on how powerful his ill chosen words have on a person suffering and in pain. I know how this has altered the path of your life and can only wish you well. Many blessings to you as you make this journey.
As one who knew you BRA (haha, Before R.A.!) I can attest that you are one of the least likely people to be “a succubus abusing the teat of a welfare country.” You were going to KU, working on your Masters, you were working at Audio-Reader as a student announcer AND you also volunteered there, you were married and totally responsible for the home and pretty much all the things associated with it, cooking, cleaning, etc. You had no free time, and you packed your days full of tasks. You always had a smile on your face and were quick to find goodness in everything. That might be why you were willing to overlook your ex’s rottenness towards you because you knew that he did have some redeeming qualities, somewhere. His awful treatment of you isn’t a reflection of your poor life choices, but are his alone. The same with that awful doctor. I am sorry you had to endure such abuse, and I hope that there is a website where you can “out” him on his abuse. He is seeing people who are in pain, and he has zero empathy. I wouldn’t want him to treat anyone I know. Love and hugs to you.
Heartfelt. Clear. Informative. Brave. Well-written. This is a great outlet for you and also helpful for others to understand what you are/have been going through. So when can we look forward to the bionic knees???
Hopefully in June, but we’ll see….
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Thank you for you kind words. I hope I added my affiliate link to the page. Let me know if it’s there and if it works!
Before I had cervical spinal fusion , I fell off the MRI table,I was allergic to the dyethey pulled me out of the tube and forgot to lower it.I fell to the floor knees and hands first,tore my rotator cuff. No one knew.went to er they missed it to. Had spinal fusion-c3 -4 -5 and landomectinies to 6 and7 .the pain was suicidal.I lived on oxycodone for 3 years.the doctors one after another thought I was just a junky. Finally they did an MRI on my shoulder.all of a sudden they start calling me sir.so they did surgery on my shoulder.woke up and hand and fingers looked like sausages and refused to sign out.next day they put me on oxymorphone. So I went home. A couple of days go by my other hand swells up.just like that I had ra in both hands.I went from being normal to a cripple in two weeks now it’s my knees. Your saga is gut wrenching. .I’m so glad we met