Thursday, August 6, 2009

I have been a terrible patient....

Over the past year I have been a terrible patient. The last time I saw my nephrologist over 9 months ago he told me that my chances of needing a kidney transplant within the next two years had decreased to 1 in 3. When I began treatment with him, it was 1 in 10. I admit....I freaked out. I missed two appointments with him and I've basically pretended that none of this was happening. I stopped taking cellcept - mostly because it was making me throw up every morning, but also because it reminded me that i am sick....a fact that I have tried to deny off and on since I was 16. I do NOT want to be a sick person! But as I write this my left hand is so swollen and sore that I can barely use it. My body is swollen and unhealthy. And more than anything, this pulsing thought that I can not ignore courses through my psyche in quiet moments....my kidneys will fail and I will die if I don't see the doctor and take this toxic medicine and treat my body as I'm supposed to - not how my peers act but how someone with chronic kidney failure needs to act.

I HATE this. I hate doctors, I hate hospitals - I hate the word kidney. And I am alone. I am not alone in the sense that I have so many people that love me and would take this on for me if they could, but ultimately this is my battle and no one can possibly understand what this is like. I am 28 fucking years old. I don't think at this age I'm supposed to be worried about strokes and heart attacks and kidney failure. I don't think I should know what a grand mal seizure feels like or know the horrors of cerebral spinal fluid leaking down my spine. I don't think I should have to worry about what dialysis would do to my body, my arm, my life. Yes....I am feeling very sorry for myself at the present moment. It's been a rough couple of months - and lupus has just been the tip of the iceberg....the constant and almost comforting source of anxiety among a myriad of unexpected and painful occurrences. Over the past five months so many terrible things have happened, too many too discuss even here in this anonymous forum. I buried my health issues deep inside. I didn't acknowledge it. And with that first denial many others followed. Once you start pretending it is easy to keep going.

I know I can't deny any more. The pretending is over. I made five different doctors appointments yesterday and it was scary but felt good. It felt as if I was taking control back. I wanted to write my first blog entry in a long time because I am just as shocked as anyone that I have avoided my treatment and my doctors for this long. I am intelligent, rational, and understand the implications of not taking my medications and going to the doctor. I have ALWAYS thought that THOSE people that didn't go to the doctor for fear of what the diagnosis or prognosis would be were incredibly stupid....the only thing you are protecting is your own ignorance, nothing else changes. But here I sit, 9 months later, and I AM one of those people. But I won't be anymore. I don't want to live in the dark anymore. I'm gathering strength and support and I'm going to tackle this head on. Anyway, that's all I've got. I hope all out there are well and are doing their best in their own battles.

Good night.

28 comments:

LFA said...

Can you pass this along via your blog, and to all your contacts?

Lupus Foundation of America Needs Your Help -- Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act

Go to http://capwiz.com/lfa/home/.

Cclick on the link "Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act," enter your zip code in the box called “Call Now” and click on the “go” button. You’ll then be presented with the contact information for your senators, as well as get talking points for what to say when you call.

Please ask your family, friends and coworkers to call on your behalf as well.

Shaista said...

Hi, you haven't posted in a long while, and judging from this post, you have been terribly unwell. I wonder how you are feeling now? Are you back on cellcept? Horrible stuff, I agree! Look after yourself. Courage!

Abbey said...

My dear sweet Butterfly Girl. I just found your blog for the first time. I hope you post more often. I too know the temptress denial. Blessings and strength to you sister!

natasha said...

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natasha said...

Disease.com is currently in the progress of choosing blogs to receive recognition from Disease.com as Top Blogs. This award is not meant to be anything other than a recongnition that your blog gives information about tactics that directly or in directly raise health awareness and prevent the transmition of Disease. Simply place the award banner code on your site and your blog will be listed as a Top Blog on Disease.com. Disease.com is a Private Global Health Watch Group. Whose goal is to promote healthy living though the spread of information globally. Thank you for your dedication to your blog. Please reply me back with the subject line as your URL to avoid spam and to make sure that you only get the award banner.

If your Believe in our Goal of Global Health Text link to use for your readers.

Text Link: Disease Url: http://www.Disease.com

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