Playing The Cards I Was Dealt

I think for the first time in a long time, I was afraid to face my feelings, let alone share them.

I was excited to have the spinal cord stimulator trial because I had hope that it would work and in turn give me a part of my life back that I haven’t had in a long time. I had faith that the pain of the procedure would be so insignificant compared to the pain it would erase. For the first time in years, I knew that I was on my way to being me again. I didn’t even get a full 24 hours to breathe again. I should be used to this by now, but it never gets any easier.

I’m being coy but if you know me, you know I’m referring to the decision to begin a new medication for the MCTD. I really thought I was on a good combination that was keeping everything at bay. Clearly, I was wrong. I’m upset. I’m disappointment in myself that I didn’t know something wasn’t right. Most of all, I’m scared. It’s hard for me to allow myself to feel fear or acknowledge it. But, I’m scared. Even the risks of being on as many medications as I’m on especially the Methotrexate) were always there, I never felt like I was in any real danger. Sure, it’s not recommended that I be around people that are sick, and I should be elbows deep in hand sanitizer always, the OCD has ‘made’ me do that for years prior. No big deal. Being on any kind type of immunosuppressive therapy brings the risk of infection and yes, even cancer up a few notches. I understood and accepted that when I first went on Methotrexate and even more so, every time my dosage increased. I was comfortable with my decision. I wasn’t afraid of what it had the potential to do. This new medication, the Cellcept, scares the hell out of me.

Logic would say, “If it scares you, why take it?”, easy enough right? It’s not. I’ve been 100% okay with having been on Plaquenil for the past 4 years [as a preventative] because I know that it doesn’t wreak havoc on my body. I’ve been 100% okay with the increases in the Methotrexate for the same reason. I know that my body can handle it. I haven’t even begun taking the Cellcept and I have no idea what’s going to happen. I could get horribly sick like I did when I tried Imuran. I could have mild side effects like I have with the Methotrexate. I could live for years on the same dosage because it’s keeping ‘the beast’ at bay. Or it could kill me. When the disease started to ‘rapidly progress’ (my Rheumatologist puts it), I made the choice to go on immunosuppressants because I would rather have five good years being on it, then have ten bad ones not being on it. I still feel that way, only this time, the timeline seems more concrete. If I do nothing and continue taking the Methotrexate, knowing that it’s not helping, I’m putting myself at risk with no reward. At least [hopefully] with the Cellcept, if it helps, then the risk is worth the reward.

There are two things I do well when it comes to my health; research and do my best to keep control. I’ve done more research on MCTD than I did on any of the twenty plus page papers I write during grad school. I’ve read and re-read and asked my Rheumatologist a million questions and asked [the second opinion] doctors a million questions. I’ve tried to figure out why I have this, when it started, what is my life going to be like; you name it, I’ve tried finding the answer. And there isn’t one. There is no answer, and THAT is what equally scares and frustrates me. I do everything I should as a patient, and no matter what I do right, I’m always one step behind. Every time.

I don’t know why I find this amusing, but, when the good doctor and I had the conversation about beginning Cellcept and listening to him go over the risks, two things came to mind; I need to mend my fences and I’m not ready to die yet. For, I don’t know how long, I’ve preached about not being afraid of death because I don’t believe that it’s ‘the end’, and for the most part, that belief has been constant. The more he talked, and the more research I did, the more it faded away. I suppose reading that people taking have an increased chance of ‘getting’ things like lymphoma, skin cancer, a brain infection, and other lovely infections would freak anyone out. As to why I feel the need to mend fences with people I’ve cut out of my life, no clue. I cut out the people that were toxic and served no purpose but to cause stress and chaos. Maybe the idea of having a small turn out to the funeral [I’ve requested not to have] is the driving force. Who knows. For now, I’ll keep my cards hidden and wait. Ok, I’m done rambling.

Since my insurance is being screwy yet again, I don’t know when I’ll begin taking the Cellcept. Soon, hopefully. I’ll update on this and my pending surgery to get the permanent SPS implant.


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