What a little time will do

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!"

It is so hard to read about your past agony. You are a very brave and strong woman. I’m sure you know that by now, though. This disease can take us down, but when things turn around we can look back and feel empowered for future episodes and difficult times in life. You are an inspiration. Thank you for spending the time, with work and all, to share your experiences.
I have been diagnosed for 21 years and it’s been one interesting ride. I am now, 40 and anxiously awaiting new research and developments in the future. Thank you, again for sharing.

Thanks for posting this. I sent a private message to a friend yesterday and said, essentially, the same thing.

I can't imagine that when I was first diagnosed and suffering untreated I would have believed that it does get better, but, really, it does.

It takes effort and commitment on the part of the medical professionals in your life and on your own behalf. Every resource you have (physical, emotional, mental, financial, familial, fraternal) will be tested and some will be taxed worse than others. Having a game plan and sticking to it while maintaining a flexible attitude about your definition of success are key. You are never done with this disease. You are always on a journey.

Thank you so much for reposting this it was very helpful!

July 12, 2012

"Hi all, I’d really appreciate some advice from the long termers (and I’m sorry, but I don’t mean it hasnt been quite right for a while - I mean the “I have days where it’s ok, others where I take opioids and pretend it is, and others where it’s really not but I pretend I have gastro if I’m at work, or ask the family to be gentle if I’m at home, or it’s been 20 years, and I fought that wheelchair until yesterday”

So, the deal is I’ve just been given a big promotion (god knows how - I guess I looked better than the other option). But in reality, I’ve only had this silly disease for 6 months, I’m still feeling very fragile emotionally as well ( I always had to be good at stuff. To do everything. I havent come to terms yet with the fact that I no longer can)

So I just don’t really know how to approach it. I have very, reasonable concerns I’m actually not physically capable, both from a work and a stress perspective.

But if I don’t keep this job, we’ll have to sell our house, and it’s probably worth close to 100k less than the loan. (so in Aus, you end up with nothing, and still have to pay the remains of the loan)

But if I battle it out, I can probably scrimp enough for a biologic ( biologics in Australia are subsidised by Medicare, and ironically it’s unlikely I’ll qualify while I manage to keep a Job in order to pay taxes, and while I can still brush my hair).

So, do I take the high stress job, scrimp and just pay for the biologics (hoping like hell they work), or should I seriously consider just giving up and losing the house, and everything?

What has the longest term impact, for those of you who have experienced both? (mental health being as important as physical)"

I had some amazing advice from many of the people on this forum who are still here today. I took on that promotion, and with the Enbrel and humira did well, though every day I still ask myself if I shouldn’t go slower :slight_smile:

But the overriding point is that it really does get better. A lot better. Better than I could have imagined - not long after diagnosis when I couldn’t walk a block, I could not conceive that I would be doing what I can now - my only explanation is tht if your body can become useless in weeks due to inflammation, then It can also become damn useful in a short space of time with the right meds!