Jul. 21, 2016

Living with a chronic disease

Living with a chronic and incurable disease is difficult but not impossible.  I was diagnosed with this disease in November of 2013.  I do not share what that disease is with everyone.  This is due to the fact that I have lost friends because they are uneducated about it and closed-minded.  Though this disease has helped me separate the real friends from the fake ones, it still hurts.  On the other hand, there were many more that embraced me and saw past the disease to the woman, the friend, the sister underneath.  I know that I am truly blessed.  The disease that I am living with comes with a lot of stigma.  It is one that people have known as a “gay disease”, a “drug user disease”, a disease “earned” by people who are promiscuous.  I am none of those.  No one earns this disease.  No one deserves this disease.  I have only met a few other people like me who are living with it and they do not fit any of those ridiculous descriptions.  They don’t deserve those stereotypes any more than I do. 

I am educated.  I am also educated in my disease.  So imagine my shock and terror when I heard my doctor tell me that I had this disease.  I am a cautious person in most aspects of my life, but especially in the one in which people would assume to be the avenue in which I got it.  Let’s just say that my early treatment was horrendous.  I was taking twenty-two pills a day including antiretroviral treatment.  I seriously hate taking pills.  I was at a dangerous level health-wise and my body started shutting down. I was seeing four specialists.  Six months after diagnosis, I was told by a doctor that I would not survive to my birthday in December.  There couldn’t have been a better way to challenge me.  Not only did I survive to that birthday (and obviously past it), I managed to stay employed full-time and graduate with my Associate’s in Health Information Technology.  I took my graduation portrait and mailed it to that doctor and told him to kiss my ass.

Then, there was IV therapy twice a week for four months after I had a power port inserted into my chest.  Even though I beat that doctor’s expectation, my desire to keep fighting was getting weaker and weaker.  In November of 2015, I was diagnosed with cervical cancer.  I lucked out that it was early enough to have it taken care of through 3 surgeries.  In March this year, I was told that they got all of it when they did the hysterectomy!

Part of the problem with living with this disease is that most of it is invisible.  I am a big woman and am considered reasonably healthy outside of my weight.  When I’m not feeling well, it gets bad where my entire body is in considerable pain and I often visit the porcelain throne. 

And yet, I know there is a reason that I am fighting this.  I’ve learned through my favorite author, Audrey Carlan, to #TrustTheJourney.  This journey so far has taught me to be more understanding of others, to be even more open-minded and caring.  I can’t wait to find out what other good things it has in store for me.  So until later...