Friday, July 29, 2011

I Just Needed to Moan a Little

At the end of the day, I wish I could just go home to someone that would hug me and tell me everything was going to be okay!

I'm sick; I hate it. I hate always talking about being sick and driving my poor friends nuts with all my medical maladies. I hate that I'm not in control of my condition. I hate that in the last 5 years I've been able to conquer my condition, but for the last 8 months it has controlled my life. I hate that being sick all the time was thrown in my face while my heart was breaking. I hate that even though I wish I didn't talk about it all the time, I can't settle my brain unless I spill all my medical beans; try to relate with other people. So, here goes another terrible blog to read, but it's saving my sanity, and maybe my pals can spare a little compassion next time I'm complaining. All I want is a hug and a, "you're a tough girl, missy."

So, I've fainted twice this week and have had an overbearing "dizzy" feeling about me. It embarrasses me a lot, but there's nothing I can really do to prevent it. This heat is so draining to my strength that even just 10 minutes in it and I get tunnel vision. I don't want people to treat me like a weakling, but at the same time I want to be able to ask for help if needed. Wednesday, Julia was sweet and fanned me until I was able to get up again. So, no big productions please. Just help me up, get me some water, and then let me rest quietly until I'm functioning again. God, I remember passing out at the mall when I was 16 outside of Victoria's Secret where I worked at one of those jewelry kiosks. All the VS girls stood around me saying, "she's so pale", "is she dead?!"... it was humiliating! I want attention for being awesome, not for being weak.

I had a doctor's appointment this morning. Since my last appointment 6 weeks ago I have lost 15 pounds. It feels so good since the weight wasn't mine to gain, but was steroid related. I finally fit into my jeans and feel like me again. Doc even called me skinny. But the appointment wasn't all joyous. I have an amazing Rheumatologist and a Dermatologist who has become an expert on my rare skin disease, and they are working together so wonderfully to try to make sure all 3 of my conditions are properly addressed, but I'm spent! I'm done and I don't want to do this anymore. After a summer of steroid hell, cancer medication that made me vomit for nearly 3 weeks straight, and medications out the wazooo to try to reverse the side effects of steroids, I just can't do these treatments anymore.

So, the docs want to put me BACK on steroids and the vomit pills. WHY?!?!?! I started crying in his office and told him I couldn't do it. I felt like a child pleading with their mother, begging not to go to school. Of course, he was very kind and asked me to please try one more time and if it didn't work we'd try something new. Ugh, it's all the new stuff that is draining my resolve. A month ago I was on 6 different types of medication, and this morning I only took two pills. I want to keep it that way.

More weepy news: I have been taking Cymbalta for about 2 years now, and it has done wonders for fibromyalgia-related muscle pain. I stopped taking it about two weeks ago, as I have a huge balance with my online pharmacy and need to wait for payday, so I couldn't refill my prescription. I told my doctor this today when we were reviewing my current meds, and he asked me if I've experienced any side effects from not being on Cymbalta. Of course I have been feeling more pain and plan to get back on these pills, but I asked if depression is a side effect of not taking it. Well, the pathetic news, depression is not a side effect of Cymbalta withdrawal. Rather, he said symptoms that are in "existence" prior to Cymbalta have come back. My reaction to learning that I have depression was, of course, more tears.

What felt like a success of eliminating medications has turned into a battle. Back to the vomit pills and steroids for a few weeks, so please bear with me. This was supposed to be the summer of me, but there's always next summer for that I guess. I'm a weak little sack of flesh filled with diseases and molded into the shape of a girl. I want your life, please!

It's really just frustrating because, although I have amazing and caring friends, I just feel like nobody understands. Also, I want to work on me! I want to be happy and start dating and be able to work hard at my jobs and I can't because I can't resolve one of the basic human needs: health.

I'm still stuck in the safety portion of my triangle and I'm too smart for that!

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