I don't really know where to begin. Some of the most important changes in my life have happened since I last wrote. I began this blog journey as a way to educate others, but I think in the process, I ended up educating myself instead.
The last few years have really been a whirlwind. I would like to believe that I've really found myself in the process. When my health began to go downhill, I think I clung onto something that gave my symptoms a name. We went so long trying to figure out what was wrong with me that the minute my doctors believed it had a name, I hung onto that.
I let my illness ruin my life. That, was all me. I spent years convinced that my illness was keeping me from the life I wanted. The truth is, I was keeping myself from the life that I wanted. I blamed my illness for the reason I didn't want to try working again. I also blamed it for the reason I never wanted to go out. Did I have a good reason to feel the way I did? Of course. Should I have let it run my life? Of course not! Yes, I am in pain - more pain than I have ever been in. The truth is though, I'm done letting whatever I have control my life. I was diagnosed with Systemic Lupus in February, to then be told that my Rheumatologist thought I had a rare disease called Vasculitis. An antibody called ANCA was detected in my blood, which then led to a referral to the Vasculitis clinic out of Mount Sinai. I was devastated. I was angry. Those doctors that I trusted so much, let this disease progress. Well, never be surprised by doctors, or your health for that matter. Turns out, the same antibody was tested at St. Mikes, and it came back negative. For weeks, I was scared to death. I have now learned that life can change in an instant. I came home from my initial appointment with the rheumy, feeling blessed that I was finally diagnosed. Now, we are back at square one. I have to go back for bloodwork every 3 months, basically waiting for my ANA to show up positive. I have all the symptoms, and all the signs. Some people, it takes years for antibodies to develop, and for some, the antibodies are there even before the symptoms. Could this be something else? I wouldn't doubt it. We know that whatever this is, it's an autoimmune disease. At this point though, I just need to live my life and forget about all of this until it shows up. I'm tired, and I'm frustrated. I am no longer focusing my life on my health.
The most ironic throughout all of this, gives me one more reason to not trust doctors OR the medical field. I went months, thinking I had a few small cysts on my ovaries, to find out last month that I ACTUALLY have a 13cm dumb-bell shaped mass in my adnexal region. The radiologist believes it looks malignant, however at this point - I think they're all crazy. No offense, but there is no way I am going to begin to worry, it's wasted time. Until they take this thing out, I'm living my life and this, one more thing, will not change my outlook on life. I have an MRI tomorrow at Princess Margaret Hospital. Yes, the leading hospital in Cancer research, gynecological especially. Whatever happens, will happen; me worrying is not going to change it. I mean, look at what 2 years of worrying did to me. Nothing good comes from it. My surgery will most likely be sometimes in May or June, and although I'm not looking forward to it, I've accepted it. I accepted the fact that I will most likely require surgery on my ovaries every few years. My intuition was right; my last surgery was only in 2008. The difference this time around however, is that I'm no longer considered a low-risk case. Due to all of my medical issues, I will now have to be monitored by an anesthesiologist, among other specialists both prior to and during surgery. Risks include, massive stroke during surgery because of my blood pressure. Among the variety of other complications that go along with operating on someone with an autoimmune disease. I have accepted the fact that this mass needs to be removed, and whatever happens - happens. Of course, I'm terrified but what other option do I have?
Well, I need to get some sleep. Tomorrow will be a long day in the city. I will update again soon.
Bye for now,
xoxo
