TODAY marks 21 years of living with this disease for me. It’s not necessarily a day I want to celebrate, but it is also a day that I cannot let go by unmarked. I have written a few different blog posts this week reflecting on the live I’ve lived so far, the lessons learned, and the amazing steps that have been made in chronic illness and rheumatology care since 1993. This is part three in the series.
Yesterday, I logged into my facebook account and saw a post from another adult living with JA in a JA support group that’s generally frequented by parents of children with JA. She discussed some of her frustrations having grown up with JA – the limitations she’s always had, the things she’s missed out on, the anger she feels when an older person complains about what they’re suddenly unable to do now that they have RA, etc. She reflected on how she just left all the adult RA support groups, because she couldn’t handle the complaints about giving up high heels and such anymore.
Last year, I was very much this young woman. This year, everything in my life has changed, and I hope it does for her as well. There is a place for anger, but there is beauty in moving past it and using it as fuel for change.
When I first got sick, things happened quickly and yet slowly at the same time – medical tests, doctor appointments, my kindergarten class sending ‘get well’ and ‘we miss you’ cards, eliminating certain foods, changing detergents and soaps, getting chicken pox on top of my itchy then-unknown rash, etc, etc, etc. Nothing helped. I was just so tired of being poked and prodded and not being a normal kid. When the misdiagnoses of leukemia was brought up, and I was given six weeks to live, I made a bucket list.
I still haven’t done everything that was on it. I don’t even remember what all was on there, not that it matters now. My priorities are different and I’ve done things I never dreamed would be possible.
When I was finally diagnosed a few months later at age 6, medical literature stated that I’d be in a wheelchair by age eight. There was other literature that stated just how difficult SJIA in particular was to treat, and that disfigurement and life threatening issues popped up for every one of the afflicted children. I had already thought I was dying, and the household I lived in sadly encouraged that because it increased both my panic and my attachment to the women I was raised by. As my eighth birthday approached, I cried myself to sleep every night thinking that I would magically wake up on April 26, 1996, unable to walk – that I would be unwrapping a wheelchair instead of Lego sets. When that didn’t happen, I was not relieved. Instead, my anxiety increased, and I began to go to bed with fear in my heart. I was pulled out of school and left to school myself. I was isolated from friends and adults who could’ve helped see the negative issues in my household and get us help. I was refused a medication that could’ve gotten me into remission or my disease under control, avoiding the disfigurements my bones now have. In fact, I was refused all medical treatment period within two years. I wasn’t really even allowed to learn about my disease – that was never a curiosity fostered in my home. My sister had it even worse with the things withheld from her and the issues she endured – and is still going through – because of it.
I begged to go to school every single year. Some years, it was that I ‘didn’t ask early enough’ so there was no way I’d be able to get into a school. Others it was that I clearly was too sick to go. When I was finally allowed to go back, I was overweight, overdosing on Aleve, and incredibly socially awkward. I was picked on and bullied – even by teachers. Middle school is always hard, but damn. I’m lucky enough that I fell in with a great group of kids as friends.
In high school, things in the household got worse. Violence escalated in newer ways at home, and being there sucked. I loved learning about the different cultures and religions in the world. I loved escaping my body when I could. I had been meditating and doing yoga since I was 12, but this gave more meaning to it all. My pain escalated and I thought that I could lose weight by starving myself, and that made things a million times worse. I then threw myself into my academics, and excelled, but still felt crummy more days than not.
In college, my pain escalated with the lovely new cold of Wisconsin I was being exposed to. I tried to get help on campus, but instead of knowing how to help at all, I was told that I knew my body better than the medical professionals at the health clinic – that I was a big girl and that I should know how to take care of myself. I couldn’t find any medical records to help myself. I began to blog, and I found others like me! I met amazing people over the internet, who along with my now-hubby helped push me to get care. I began medications, moved to a new city, and tried to take graduate classes while working. I was able to keep it up for a while, but not long enough. I’ve been removed from school for three years at the end of this semester. I miss it, but I also no longer need it for the purpose it once served – escape and a doorway to freedom.
This past year has been amazing. I’ve finally put names to what my sister and I both went through growing up. We’re understanding it, and others are as well. Friends are asking, not to be nosy but to help and to learn – heck, a wonderful friend is how I really learned about these forms of abuse in the first place! I’ve cut out toxic people from my life, knowing I owe them nothing simply because of genetics. I’ve also welcomed people into my life who really deserved to be there all along because of genetics. I’ve gotten married – something that the small scared child I once was thought would never happen – and it was the best day of my entire life. Arthur stayed calm – stayed away – until everything was wrapping up. He let me have my day, and so now I am more patient with his days. That bucket list lil K made has far been dwarfed by what this year alone has brought.
A lot of feelings come up in each of the paragraphs above. I’ve dealt with depression issues since I was young – partly because of this disease and partly because of the family I was born into. I’ve dealt with a lot of anger dealing with the issues surrounding both too. Strong and negative emotions tend to affect my disease more. Stress makes it worse. Because of this disease, I have spent a long time hating my body because of what it cannot do, and hating others because of what they are able to do. I’ve spent most of my life being isolated, in one way or another. This blog has been, and continues to be, a way that I can open up. It has led me to meeting other sick chicks and health activism and patient advocacy. It has even led me to apply for the Stanford Medicine X conference (cross your fingers!!) and to Washington, D.C. this past March to hobnob with politicians.
I still hate this disease. I hate what it’s done to this body I live in. I hate what it continues to do while only kinda under control. I hate that it often controls what I do. I hate that it makes me look like a poor job candidate or a poor worker. I hate that it’s brought little buddies like fibro into the picture too. I hate what it has done to others that I know, from disfigurements to overwhelming medical debt to death. Without it, like the girl on facebook earlier, I don’t know who I would be or what I would do. I wish I could change the pain levels and the lack of treatment that caused much of those.
On the other hand, I know so many people around the world that I can’t imagine life without. They help push me to fight harder, to be a better person, and to change the world – but also to remember to take breaks when I need to and practice self care and self love. Like my hubby does, each of these people remind me that anything is possible when we put our minds to it.
This weekend will not be a sad one lamenting Arthur as last year’s kind of was. Instead, I plan on practicing some self care and love. T and I are heading to a hockey game this afternoon, baking some treats, spending time with our guinea pigs, and finally finishing up with our wedding picture edit requests.
