"Where there is creativity, there is hope." ~ Donna Karan

Dreary Day

by - Wednesday, July 14, 2010

Today was a bad day in so many ways. I feel exactly like the weather looks, dark and dreary. After stopping arava yesterday I'm still struggling with the side effects (of course that will get better with time) but this drug has really knocked it out of me. What's worse is that although the arava hardly made a difference overall, I did notice a slight reduction in my hand pain and joint stiffness and so today my hands are once again protesting with pain and joint stiffness, already missing the arava. It's so much more painful to type now and I'm really quite upset that I'm back at the beginning all over again fighting an impossible drug war. I feel like I can't win. Every drug I try causes side effects galore. They are wrecking my life. I'm not able to get out and socialise anymore, I haven't worked for the past two months and the things that I want to do at home I can't even do because I just don't have the physical stamina. I'm feeling more alone, abandoned and isolated than ever before. I don't know what to do, I don't have anyone I can turn to for support other than my family and I feel trapped. So here I am writing my heart out. Blogging is the only thing getting me through right now. Emotionally I've been coping very well lately but depression is starting to rear its ugly head once again. Especially with everything that's been happening over the past few weeks or should I say months! Especially after the day I've had today, it's no wonder I feel so miserable.

Today I got offered an occasional babysitting job that would require me for only five Thursday mornings spread out between now and the rest of the year and of course I can't do it because of stupid drug trials and side effects. I can't even manage working my own job at the moment and those are afternoon shifts! I struggle to get out of bed before 10am! I'm so annoyed and angry at myself because I so badly wanted to do it. Terribly disappointed that I can't even manage a mere five mornings. Today was the final straw, that's the third time I've been asked to do some sort of babysitting job in a month and I yet again have to turn it down because of my health. I'm devastated, disappointed and heartbroken. I can't do what I love to do, I've had to sit back and watch my life being pulled away from my grasp, and what I can't have seems to be rubbed in my face constantly. I die a little more inside every time I have to say no to something that I would love to do. I'm twenty two and am struggling to keep my job, it's pathetic. What the heck has happened to my life? Where did it go? I feel like I'm just watching it being flushed down the drain and I can't do a single thing about it.

I've just about reached breaking point and after a visit to my G.P. today I feel even more upset. Initially I made the appointment to get a form filled out, but seeing as I can't get the eczema around my eyes under control  (I look like I've been bashed!) I thought I'd get that sorted too. Turns out the eczema and dry skin is caused by the medication plaquenil which I've been taking for the treatment of arthritis. I'm not impressed. I was given a script for cortisone cream to help manage that side effect, well at least that will now be sorted, I hope. No more burning, itchy and stinging eyes would be wonderful. So I got my script and thought I was done, but no she had to comment on how bad my skin was looking. There is no denying that I'm struggling with acne caused by years of medication but to have my doctor say "you're struggling with acne aren't you? Let's put you on antibiotics" just depressed me even more. I didn't even go in for that problem, but I suppose it does need to be addressed as it's causing scarring. I was put on vibra tabs, an antibiotic, to help with the acne a few months but as usual I became unwell with the side effect of nausea. So I'm now trying a topical antibiotic. "Here try this, I give this to all the young teenage boys" oh that's a real confidence booster! Originally my doctor and I thought that my mirena, which is an hormonal intrauterine device, used to treat my endometriosis was causing the acne, so I had it removed. Eagerly awaiting clearer skin...three months later and still waiting. I found out today that it is most likely the methotrexate causing the problem and the dose is probably going to be increased soon too. Great. Just great. I just want my face to go back to normal, I miss my nice soft pre-medication skin. We also discussed how my rheumatologist has decided to trial me on lyrica. She warned me that it too causes bad fatigue but to try and persist with it because many patients are seeing results. More fatigue, when is it ever going to end? I would like to leave the house more than once a week.

To top off a bad day my doctor ended with the question "you don't have a boyfriend do you?" to which I responded "No, I'm too tired". I hate that question. I really really hate it. It's like it's used to determine how good your life is or something, especially in my case when I'm asked, "do you study?" no "do you work?" no "well, do you have a boyfriend!?" No. 'Well isn't your life is boring!'

"You're twenty two", my doctor continued the conversation, "and you don't work and you don't have a boyfriend. You should be out partying until the early hours of the morning, not dealing with this crap." At this point I was ready to burst into tears. I know she was saying it out of pure frustration for me but in my state it just made me feel more horrible about how the way my life is turning out at the moment. I'm quite aware that my life isn't very exciting at the moment but I really don't need it rubbed in my face.

I'm finding the side effects, joint pain, emotional pain and the depression so difficult to manage right now. I have my good days and my bad days, and this was just one of those bad, dreary days.

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