Well, my sick days are becoming closer and closer together.
Humira and Plaquenil combination was working so well for a while and then the flare ups started hitting closer and closer together. And now I am constantly in pain. The worst thing is the fibromyalgia flares.
I can tolerate the pain, on most days unless it is just super bad (like on rainy or humid days) but I just cannot function with the fog. It's like I was in a deep sleep and someone woke me up suddenly and my brain got STUCK in mostly asleep but partially awake mode and I can't "reboot" it.
At this point I just do not know what to do. I am so grateful to have finally found a job back in March that I can do physically - it is not strenuous on my joints at all. But I cannot oversee this jobs drawbacks.
I sit down all day and do technical support for land line phones, cable tv, and internet. It's a stressful job because I'm a very sensitive person dealing with angry customers that are demanding and insensitive. I'm also being forced to share cubicles with multiple people every day in close quarters - we don't get our own cubes - so I am finding it very hard to stay well seeing as how the Humira keeps my immune system response pretty suppressed!
I spoke with my supervisor today and explained the situation and he in turn spoke with Human Resources and we determined there was nothing that could be done about anything. I have used up all 5 of my "absent for medical reason" options for the quarter and if I miss work 4 more times I will lose my job regardless of having a doctors note that explains the situation. I think that just bites.
Last visit to the doctor I explained to him just how much everything was interfering with my ability to work. I brought up that I had been thinking maybe it was time to start thinking about applying for SSI or SSD. His response was "You're so young, and we still haven't tried Simponi or Remicaid. Stay positive. If you're not positive about it the treatment definitely won't work.."
Stay positive? Really? That's all you can give me is a lecture about how I'm not being positive enough for the treatment to work? I wanted to explode right there on the exam table. Sometimes I just know my doctor gets it and that we're on the same wavelength - that he wants whats best for me. That day was NOT one of those times. I literally wanted to punch the guy. :\ I wish I could give him a taste of what its like trying to teach an old woman how to change the input on her TV, or listen to a real asshole from Brooklyn yell at you because his cable TV is out, while your brain is refusing to wake up fully or function properly, and it takes every bit of energy you have to utter one sentence, leaving you physically and mentally exhausted afterward. And then there are the medications that help with the pain, but add to the fatigue which leave you even more useless than you were to the real world.
So tell me, how do YOU get by?
I need to just not have this disease. We all do. This is ridiculous.
And I just don't know what I am going to do.