I thought I would post some old discussions of mine (below) from when I was feeling really bad. There are lots of new members, and it’s easy for me to simply say, it gets better. It’s a little harder to believe though. I was diagnosed about 17 months ago. When this started, I was miserable. I had to take off of work for 18 weeks, and use all of my vacation time and FMLA leave. After all of that, I was bullied by my coworkers when I returned and had to leave that job with no job lined up. My husband and I put a good dent in our savings while I was out of work for another 3-4 months looking for a job. Not just any job, of course…I had to find a job that I felt like I could actually physically keep up with, and I wanted something fulfilling, challenging and that would be a good fit for my health. I finally found that job in August and have been able to work my 50-60 hours a week (though I did work 70 hours last week and it about killed me) without much trouble from my persnickety body. I have taken a total of 3 sick days since August and one of those was for an actual cold. Things do get better. This disease does not mean the end of your career. It might mean some changes, but they are doable. Be strong for yourself, promise yourself that you will wake up every day and try. Push your doctors to get you the best treatment and refuse to settle for things that aren’t working for you. I wish each of you the very best, and hope that we can all get back to where we were before PsA hit and turned everything upside down. But, if it doesn’t, there is still a good life to be had. My life if far from perfect, but it’s mine. PsA does not own me.
This is from November of 2013
"I woke up today screaming. Literally. I have never had pain like that and I have gone through 3 natural, drug-free labors. Every time I moved my leg, pain just seared through my knee and then the rest of my leg. I couldn’t walk or bear weight. It was one of the scariest things I have ever experienced. I actually had to take a sick day. I did try though. I made it down to my home office with my husband practically carrying me and shaking his head the whole way. I got the computer turned on, and tried to start, but after he heard my crying, he made me stop and stole my cables.
The doc got me on prednisone and for once, I did not argue. I have a stash, so I didn’t even need to leave the house for it. My husband has doted on me all day.
I am here because I am terrified. I haven’t heard from Hopkins yet, but the doc says he called them Wednesday and they said they would call. He suggested that I start calling too. I might get a nurse friend to call on my behalf as well, as my advocate. I keep getting platitudes from my family that the doctors will figure it out and that I’m on the wrong medications. Once I can get treated it will get better. But I am so scared that I will never get better. I have always had such faith in science. It is real and tangible, but I feel let down. After 18 months, I have such doubt. I feel like I am back where I was when this hit; wondering constantly if I have the strength to fight every day of my life. It’s exhausting."
This is from 12/2013.
"A little background: I have had Psoraisis since I was 15 and started topical treatment when I was 18 and it started to get bad. Topicals helped A LOT, and I just went to my derm for refills. Fast forward to last year, and the psoriasis got nasty. So back to my beloved derm and on Humira I went! It was great; I got into a clinical trial, so the copay for the meds and derm follow-up were covered, and even better, the psoriasis went away! Absolutely, gone, and this was nothing short of a miracle for me. (Pretty fingernails and toenails! Finally!). In June of 2012, I had my first PsA flare which was about 3 weeks long, and inexplicably went away.
THEN, came the flare from the “Dark Side” which appeared in September. Symptoms were much worse than the first flare, so I saw a rheumatologist who put me on prednisone, and ordered Remicade infusions. I was able to start Remicade in late Nov, early Dec. I have had my first 3 loading doses and have 4 more weeks until my first “real” dose. The only improvements I have noticed is that the sausage fingers and toes are gone, and the pain is somewhat less but not at what I would call tolerable. I have lots of trouble getting up in the morning related to aches and pains, and also feel pretty fatigued most of the time. I also have lots of lovely, knots and gnarls on my PIP joints on both hands. These little suckers hurt! (these returned once I had to D/C prednisone to it making me crazy. Seriously?)
So, when will it work? What are your experiences? I am getting a little edgy with the pain and funny growths everywhere, and anxiously tapping the foot that works, while driving myself a little batty, waiting on Remicade to work!"