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Living with Psoriatic Arthritis (PsA)

Update.. *needs more characters*


#1

I just got an email from Google… I’ve been in 6 countries this month, visited 21 new cities, spend over 60 hours in vehicles… And walked… 9 km… In a whole month…

Anyway I went to my reumatologist yesterday… I completely broke down and cried saying I didn’t know what to do anymore… He asked me what to do and I told him to decide because I don’t have a clue… He said just take the shot of Stelara and hope this time it will do more then a tiny bit for one month… I have an appointment in 2 months to see how it goes… Wait this was 2 days ago… I forgot to tell them I had a pretty bad cold that was almost gone… Which is now back… Or it isn’t and I’m focusing on it more so it seems worse? I don’t know anymore… I feel like I’m dying and just ignoring the signals… I feel like I’m just waiting to be one of the “verwarde personen” on the news… (a nice way of saying crazy person who should have gotten psychiatric help already and is now causing trouble in the streets…)

I while back I was talking about how hard I find it to decide if I can go to work or not… And after a particularly bad day I was thinking “well I’m still alive…” it was a meeting with work people… reintegration and supervisor… They pretty much said that they thought I could have worked that day because I was still alive… At that moment I didn’t realize they didn’t know that I almost jumped in front of a train but was in too much pain to move quick enough… (There were more then 1 “stop” point after that so I don’t think I would have gone through with it even if I could move… but in that fraction of a second I decided to do it…)

I guess normal people think they almost died when they have the flu and were actually well enough to work… Even though my supervisor has seen me work while on the flu bad… I couldn’t walk normally because I would be coughing for 10 minutes if I breathed in more then like 30%… “I can still walk”

My psychologist keeps telling me I’m not as crazy as I think… But that either means she has no clue how crazy I really am or “normal” people are way crazier then they seem… Or both…


#2

You can think about that upside down & inside out and every which way, or you can take it at face value. I’d take it at face value.

I think you’re a pretty strong person. The one time I had a really bad time giving birth I said to a nurse ‘I can only just handle this’. She said ‘only just is all you need.’ The penny dropped that those who I considered strong & admirable were probably hanging on by a thread too, at times.

Starting a new drug brings hope. There has to be a good chance that Stelara will provide more lasting results, hopefully good enough that you won’t be up against it to quite this extent, you seriously deserve a break I know.

The double whammy of PsA & fibro seems such a tough number to me. What’s happening with treatment for the fibro Cynthia?


#3

I’ve been on Stelara for 4 months now…

For the fibromyalgia it’s just the rehabilitation… which is taking ages to get started… my psychologist wanted to talk to me about the letter about her talking to their psychologist… So my 3 weeks vacation that letter was on her desk instead of them already talking and setting up an appointment… I told her before I left that it was coming and I wanted her to be as open as possible…

I can always “just” handle it… I’m just so incredibly tired from holding on… Today was my first day back to work… I was there 4 hours and I’m exhausted… I’ve yelled at several people on the streets and train station… I didn’t move out of the way of anyone… I can’t be bothered jumping around to avoid everyone… Bumping into 3 people hurts less…

I just felt like telling and screaming at them for being so incredibly selfish… I want to hurt them as much as they hurt me…


#4

They certainly are Cynthia really they are. Please believe that. I so wish you lived down the street and I could pop in and see you maybe even taking a bottle of wine with me to share. Or you could come for a ‘hobble’ with me whilst I exercise the dog, who appears to make just everyone smile. I go out for a ‘hobble’ with him whilst he takes himself for a ‘walk’! Today’s walk was certainly a ‘hobble’ which annoyed me and irritated me but still it was a gloriously sun shiney day and it was nice to be out, even hobbling.

You’re so hard on yourself you know. Being always able to ‘just’ handle it deserves a huge humongous gold star you know. You should be congratualating yourself for doing that, truly. Be kind to yourself just a little please.

Massive cyber hugs. :sun_with_face: