It took me a very long time to come to any kind of acceptance of this disease. I have "had" RA since is was at least 19. I don't think I ever truly accepted it until 2010 when I was 35. Now there are many times over those years where "I thought" I had accepted my fate, so to speak. Truth be told though I hadn't and that was holding me back.
I can remember being in my early 20's and living at home. My parents had decided that because I had RA I should never leave home and never get a real job. At the time I thought that was so very sweet. In reality it was the polar opposite of what I should have been doing. I should have been learning to live with my "new reality". I should have been learning to cope. What I didn't realise at the time, is that my parents and I both allowed me to become mired in my own sorrow. I was able to think about all the things that I probably wouldn't be able to do, instead of focusing on the things I should still be doing.
I can remember one day. I don't remember how old I was at the time, or what specific day it was. What I do remember is sitting in the middle of the floor of our bathroom/laundry room. I was totally surrounded by dirty clothes, and I was crying. I couldn't quit crying. My mom walked into the room and asked me what was wrong. The next words out of my mouth would be something I repeated to myself so many times over the next 16 years. While crying I looked at her as said "I feel like my body has betrayed me." Truth be told, that was how I felt. It was to be my credo so to speak for a long time. Let's think about it, if my body betrayed me, then did I really have to work? I gave myself the permission to be stuck, and stay stuck. Over the years things did change, and I got "unstuck" but I never moved passed that feeling.
I would say, "Oh I can't lose that weight cause I have RA. Oh no I can't take care of myself, I have RA. For so many years I let myself not care about my own health, because what did it matter, I had RA and that would always be first. What I didn't realise is that it didn't have to be first, never should have been first.
In 2002 I got married and the next year had my first child. It was such a wonderful experience, but my parents weren't ready for me to move forward. At this time my emotions were in a total uproar. My husband and I ended up having to move from TN to Australia, where he is from. I had never been out of the US and never really been away from my family. At the time we felt we had no choice, and truly we probably didn't. My mother in particular was adamant about getting my husband out of my life and raising our daughter on her own. She had gotten her way with my older sister and raised my two nephews. I wasn't about to let it happen. I wanted my marriage and my family. She threatened repeatedly to have my husband deported. Finally we took my FIL up on his offer to move to OZ. It was the absolute best thing I could have done for my family, and myself. For one I could actually finally get medical treatment. Well it did wait until 2007 after we were finished with our family. So I went from 1994 to 2007 with no treatment for my RA. During that time I also started suffering with depression, but that is another blog entry all together.
So in 2005 I went to my first ever Rheumatologist appt. My second child was 6 months at the time and still breastfeeding. The Rheumy told me that if I was done having kids I could go on medication as soon as my daughter weaned. He also told me that if we did want to have a third child we needed to get on the ball and do it. He was of the opinion that if I waited I would end up in a wheel chair. He also said at the time that no one really needed three kids. Basically he said if you weren't satisfied with two you wouldn't be satisfied with any number ever. I had always dreamt of having three. At the time though, thinking it was going to be simple to get our daughter to wean I gave up that dream. So yet again, I was like, well I can't have my third baby, and it is all because of my RA. What more did I have to give up for this damn disease? Well God had a different plan for us. At least that is how I look at it. Our daughter refused to wean, and I got pregnant again. So my RA would go a bit longer being untreated. I arranged during the last pregnancy to go on Celebrex that day after I delivered. I had to make arrangements for bottle feeding, it is not the norm in Australia. So after all that was worked out and I had all the doctors notes I needed and the referral for my Rheumy, I was ready to get my RA under control. Now at the time my Rheumy promised me a pain free life. In hindsight I would have questioned that, but didn't. So I got my hopes up. Once I started medications, it was one upset after another.
I was started out on Plaquanil. I was dosed according to my weight and took 2 pills four days a week, and 3 pills three days a week. I was told to try this for 6 months. I started it and had a headache for 6 weeks. I pushed through that though. I had read that headaches could be a side effect. At the end of the 6 months there was no improvement in my RA.
At this stage Sulfasalazine EC 500 mg was added. I was to take 2 pills twice a day. I had to again try this for six months. Over that time I was increased to 3 pills twice a day. Then again at the end of the six months there was no improvement yet again.
Then after that we had MTX added to the cocktail. After taking the first dose of MTX I was asleep for a little over 24 hours. Could not for the life of me open my eyes. After the second dose I started having hallucinations. After this my Rheumy decided that the med wasn't worth it. So I was switched to Arava to try for 6 months. Now there was a delay here, but that was my fault. It took me a good six months to fully decide to take Arava. After I finally decided to take the med I had to wait a further six months. SO at the end of this time, I was still in a huge amount of pain. I felt like I had wasted about 2 years trying med after med without any positive results.
After I failed or decided I hated MTX I was put on Arava. It took me a good year to come to the conclusion that I should and WOULD take this particular drug. I can't even really begin to tell you why on this. I for some reason gave myself a mental block against it, and couldn't for the life of me work through it. I think it had something to do with the fact that it can take up to 3 years for it to be totally cleaned out of your system. I guess for the first time, this whole battle was very real. Yes it took me a while to get there.
After actually starting the Arava and it not working like everything else I had to start my biologicals. This was a particularly hard time pain and emotions wise. My Rheumy was retiring and I kinda slipped into the cracks. He didn't want to start me on Enbrel until my CRP and ESR were fairly high. I was suffering and he kept putting me off. I mentally understood what he was doing, but physically I had, had enough. When my CRP finally got to 26 I was READY. Although he apparently wasn't. In Australia once you have a blood test done the results are good for a month. Medicare wants them done fairly regularly when you start and continue on Biologicals. So 3 weeks went by and my Rheumy just didn't call me. Finally I broke down and some how got through to him. He finally agreed to let me start. Within a month I was starting Enbrel, but had a whole new Rheumy to deal with. My old one had not even informed me he was retiring. So I failed Enbrel, and was asked to start something else. The list just goes on and on and on. My new Rheumy was ready to tell me there was no hope for my RA. She would mumble about it being uncontrollable. SO she gave me 2 choices. I could either start Rituximab, or Actemra. She wanted me to start Rituximab, but with having 3 young children, I didn't want to totally destroy my immune system. I understood shutting part of it down needed to happen, but the whole thing. I didn't want that, so I decided to go with Actemra.
I can remember so clearly how terrified I was to start infusions. The week leading up to it I decided, "You know what my RA isn't really that bad. I can live with this no problem. I think I'll just not take this step." I have some wonderful friends and support on facebook though, and a very good beautiful friend Wende McBride talked me down from that brilliant idea. She introduced me to another wonderful lady and they convinced me I should start the Actemra. So I went in for my infusion, was given medication for nausea and everything was good. I can home after and was totally exhausted. So I went to sleep early and woke up the next day feeling better than I had in years. I was dancing through the house, and hopping around. I got down on the floor first thing in the morning and scrubbed a stain out of the carpet. My oldest child looked at me like I had gone totally insane overnight. SO for the next month I had energy, the only pain I had was from previous RA damage, and I was on cloud 9. Then on the 21st of October 2010 I went in for my second infusion. It all started out well and then it all went bad. About 30 minutes in I started to have an allergic reaction to the medication. Now this in not all that unusual. Most allergic reactions to this particular drug happen between the 2nd of 5th infusions. So as I sat in the infusion room I had 2 departments arguing over me. Cardiology was convinced I was having an allergic reaction, Rheumatology was convinced I had an underlying heart condition. Then just to add more fun to the mix Accident and Emergency refused to admit me cause I was an outpatient of Hospital in the Home. So it took a few hours and several calls to my old Rheumy my new Rheumy and General Medicine before I got admitted to the hospital. See no one wanted to send me home, but no one wanted to take responsibility for me either. Eventually my old Rheumy had me admitted under his name. Funny thing is he didn't actually retire, he partly retired, and only from private practice. He started working solely for the Rheumatology Clinic at the local Hospital. Now during the allergic reaction I had been given and injection of Phenergen (Anti-histamine). Once that injection wore off the next day I started to get a rash, on the arm the infusion had been given in. Now this cemented the fact that it was an allergic reaction for me and General Medicine. My new Rheumy, God love her, was also convinced. SO finally I was released from the hospital over the weekend.
Now here I am thinking okay so do I try again, and just get pre-medicated for a reaction or do I give up. I was very concerned and worried, and could not come up with a decision. Thankfully it was made for me. My old Rheumy wanted me to continue on since the Actemra worked so well. My new one though had done her research. She found out that a woman in the US who did have another infusion after her first allergic reaction then had a fatal second reaction. She told me she just didn't want to risk it, and I was fine with that decision. She did though have me go ahead and get new bloods done. So as we sat there I started asking some questions. Like why was it that I still had to deal with some pain. Not the pain from damage but a lot of muscle pain. I asked about Fibro, and she said Yea you probably do have it. I was already on all the meds for it though so it didn't really matter. At this stage though she decided to be totally honest with me. She looked me in the eye and said "You will probably never be pain free." I have to say at that point, that is what I needed to hear. At that moment I realised that yes I would have to deal with not only RA but pain for the rest of my life, and you know what, it was Okay. Finally I had someone being honest with me. Someone who knew my whole medical history, knew hoe difficult my RA was to treat, and was willing to work with me. Not so that I could try to achieve an unattainable goal, but so that I could live a life as normal as possible. It felt so freeing to be told, lets work on your quality of life now. Lets try to stop any more damage but also deal with the current damage. I think at that stage for the first time I felt like she and I were a team working on this. Not just her saying on you do this, but what do you think about working it this way. It was the moment that I accepted my RA, but also KNEW that I was going to be okay despite having it.
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