I’m not sure what i need to write… I feel like there’s a 1000 little things… I emailed the psych people and saw her yesterday… she’s put me on a waiting list for help managing chronic pain… I called the office of the 2nd opinion reumathologist and I have an appointment with him 25th of April so that’s not too far away… they send me a questionnaire and i feel like they asked me more questions already then any other reumathologist before… Other then how are you doing and where does it hurt…
I stopped taking the arcoxia… since i had hudge hands and feet and felt short of breath on Tenerife… the swelling was from flying and the shortness of breath was from a cold i got from being cold and wet since we had Dutch weather in a place where it never rains or the temp goes below 20°C… Everyone kept telling us how unlucky we were…
Anyway they told me to stop if those 2 things happened and especially if you get chest pain… Which obviously I got from the panic attack from being worried…
I still had diclofenac… so I took those… then figured out alcohol works great for pain and just drank instead of the diclofenac…
But now I’m on my way to work… so can’t drink… but still didn’t take my diclofenac… i don’t know why… We’ll… the pain isn’t much worse… just way sharper… so why take them?.. My thumb is killing me now though from sliding around on my phone typing…
I’m using CBD oil… don’t know if that’s doing anything (yet?) Maybe I’m using too little… Or maybe I want it to work too badly…
And why do people use so much perfume?! Are they that insecure on a warm day? Or are they using the same and I’m just more sensitive? I was actually gagging on the bus…
Just an hour left before I need to have made up my mind whether to tell the truth that the trip to Tenerife was horrible or lie and say it was great… Everyone is hoping it will have cured me… I was hoping that…
We went to the zoo there and I rented a scooter… still only just survived the day… It was an amazing zoo and we did a guided tour which was amazing as well… There was a woman there who kept walking in front of the scooter purposely blocking me… (she looked where i was before moving) her husband was extra nice to me so he noticed how she acted… We saw them after we got back to here on the airport and i was struggling to walk to the luggage belt… you should have seen her face when I told them i can walk but not far and definitely not up and down hill like in Tenerife… like it wasn’t even a possibility in her mind that I rented the scooter for another reason then being lazy…
I wish I could say atleast we had fun… my mom, my sister and me… But I’m 100% sure all 3 of us were thinking never ever again…
I’m not even feeling too bad… just empty? Numb? The constant nagging in my head seems to be gone? Maybe that’s why i want to write it down to see if it’s still there? Is that the CBD oil working? Making me less anxious?..
Oh it’s been 40 minutes already… I’m at my station almost…
Oh dear … don’t you hate when people tell you how unlucky you are with the weather!
Nope, doesn’t sound like the best vaycay you ever had, but at least you were away. Good news about the second opinion rheum, though! A questionnaire is a good sign. Maybe when you get there they will give you a quality of life questionnaire: I find those really helpful in describing how my disease is affecting me. In my opinion, a rheum that does not have their patients complete the questionnaires about functional limitations and quality of life are not doing their job.
I don’t doubt for one minute that the woman was running interference with you on the scooter. Who knows, when I am in Amsterdam, maybe I’ll run into her.
I hope you mean that literally (run into her) i love that picture!
I’m glad my pt already did the “no problem”, “little difficulty”, “a lot of difficulty” and “impossible” with me because i don’t see the pain as a problem… if I’m not stiff but it hurts a lot to do something i would say no problem… because it’s not difficult is just painful… Or i can do it just fine but i need to sit down to recover after… which would have been “no problem” as well…
Thing is, that’s a good attitude. You can get to the stage where pain is a problem with some stuff, or I have anyway. Unscrewing rusty screws and bolts is something I once did for a living. These days it’s almost impossible mainly due to pain though a bit of weakness is probably what really stops me.
‘Function’ is all. Or rather it’s incredibly important. We all want to ‘do stuff’. We long to do stuff and be effective people. I think what you’re saying is that you are now being channelled into providing really specific and useful information. But at the same time you have this ability to push through. That’s so cool … you’re being listened to and assessed plus you have a can do attitude. Ideal!
Thanks it’s just so incredibly confusing… I am so incredibly confusing… One moment I’m thinking one thing and the next it’s completely different…
I’ve been thinking of what I want to do with the rest of my life… what would i do if money wasn’t an object… just to figure out what i want… And I’d love to make things… create things… have an etsy shop or something and just create things and sell them… I feel like there’s tons of ideas inside my head just waiting to come out… But i cant translate them out… all day I’ve been feeling like there’s an idea just below the surface but i cant get to it… it’s really frustrating… I know it has nothing to do with PsA… but oh well…
Lol! It might have something to do with PsA, something to do with taking a bit of control and daring to dream again … out of dreams comes reality, in time.
I was a motor mechanic in a small garage. Foolish really, paid badly, no future. But fun while it lasted. I very much enjoy physical work, which makes PsA a little bit annoying.
I totally saw you in a garage! Doing a job that’s fun seems to be more important then being paid a lot… although i can imagine a job with health insurance is more important in a country like USA
I passed on a high paying job because I knew I wouldn’t like it as much… I considered doing that for 5 years and save up… and now i probably going to stop this job i love after 6 years… (Well 7yrs when they can get rid of me…)
So it is time to think of other possibilities? That’s not such bad thing, though a bit nerve-wracking.
The strangest thing that’s ever happened to me … big flare up that got me diagnosed: barely able to walk, couldn’t use left arm, severe pain & fatigue. As PsA had been around a long time before diagnosis my teaching job had become hell. And suddenly there was absolutely no way I could teach, I was free! I’d shuffle downstairs on my bum and start painting, didn’t wash, didn’t care what I was wearing. Paint, sleep, paint, cook, collapse, sleep, paint. I eventually twigged that what I really, really wanted to do with the rest of my life was paint or some variety of art. I’m not quite so focused now as I have much more capability for everyday life & chores, but I learnt something very important from that time.
Mainly what I’m saying is that if PsA gives you anything at all (instead of all the taking it does) then tap into it.
I’m not sure… but if i don’t want to go into a full on panic attack whenever i think of not being able to go back to work… i have to at least pretend i know what i can do…
It’s weird because i love my job and i want nothing more then to keep it… But i also secretly don’t want it… To just give up… i feel like I’d love to sit at home all day and do nothing… But then when i do i go crazy… is that what you mean by being free?.. not having to struggle everyday…
I feel so lazy for wanting to sit home and do nothing…
Basically the decision whether or not to keep on teaching had been made for me, so that was a relief, but I found something else and yes it did feel like freedom, not just from the daily struggle (which had got completely ridiculous) but also from wondering what on earth I’d do without my career. But before that I went around in circles for years, it’s not like things fell into place easily.
You’re fatigued I think and therefore you long for rest. But you’ve got a lively mind and the desire to do things with your life so you don’t want to curl up and give up! Don’t be hard on yourself, but keep thinking, dreaming and working it all out. I know PsA is an absolute *&^% but there’s also the fact (I think it’s a fact) that some good can come out of adversity because it forces us to take a long hard look at our lives.
It’s like if some people see someone pull up to a handicap parking space with a permit, and get out working fine - there’s a type of person who will feel compelled to make a comment or passive aggressive action against that supposedly “healthy” person who’s taking a spot out of laziness.
If there’s some schadenfreude to be taken from it, she probably felt super guilty for days that she was, basically, being a terrible human being. Perhaps little comfort to you, but I am evil like that.
Sorry to hear that the rest of your vacation was pretty much a wash, and that you were having the issues with the meds. Here’s hoping that the CBD oil (or, well, anything, really), is having a more positive effect on you, and that there’s a little bit of hope over the horizon.
“Men’s work”–I did a lot of that, too, Sybil! Not mechanic work, but I was right there when we built our two houses–digging dirt, shingling the roof, pounding in nails with a real hammer (I don’t think carpenters use them anymore), lifting heavy things, laying tiles and cobblestones…work I think contributed to the awful back I have now. Some of us just aren’t cut out for the “men’s work”–but we sure loved it at the time! The “after-effects” are killers–that’s why I don’t envy you with all the remodeling you’ve been doing lately–I hope it’s not causing you too many aches and pains!
But, yes, there is great reward to knowing we could do THAT–often, something a woman “isn’t capable of”! It’s very disappointing not having the strength to do those things anymore–Cynthia, hopefully, there are better days ahead, though!
I went swimming yesterday morning… my pt told me to take it easy and stop if the pain gets worse and just rest for a bit… so i did there were like 15 other people… all at least double my age who were swimming way faster and more laps then me but i didn’t overdo it but was still in the water for 45 minutes! Too bad i got in a fight with my bra in the tiny cubicle with moist skin… Which took me way too much to get on (or off at that point)… then i was cycling home and when i got outside it was warm and sunny and i was still hot from inside so i decided to take off my jacket… but it wasn’t as warm as i thought so i cycled way too fast to stay warm (which i didn’t really realise until i was almost home)
Anyway when i got home i was proud of swimming but frustrated over being stupid after… so i decided to try and finish my crochet project… which i did
((( Did i weave the crochet in well enough with the PsA pain so i can proudly show off my skills? )))
I think i might actually have muscle pain with the PsA pain though so i did actually train my muscles
Hey, that’s a great … it’s on the tip of my tongue … grrr, put me out of my misery & tell me what type of bird it is please! Anyway it’s a really cute little thing & really clever. I’ve often wondered about your profile pic, I guess that is your work too.
The bra. The over the head ones can be positively lethal in a changing room environment but sometimes other women help untwist mine before it strangles me.
And yeah i did the little turtle as well I’ve done a lot more now that i think of it… i should make a collage… lol
It wasn’t even an over the head one… i clasped it behind me back and when i pulled up the straps they got stuck halfway up my upper arm… i could get my thumbs under them but those hurt like hell…
A sulphur-crested one at that! Oh my, Cynthia, to think you spent 45 mins doing PT in the water, cycled home, then crocheted that exquisite, detailed little creature, all of which is a serious achievement - with or without PsA.
To address your much earlier post, I am pretty sure that lazy is not an appropriate adjective for you. If it is, then I’ll be most satisfied to be called lazy too!
(run into her) i love that picture!
it’s just so incredibly confusing… I am so incredibly confusing… One moment I’m thinking one thing and the next it’s completely different…
there were like 15 other people… all at least double my age who were swimming way faster and more laps then me 
but i didn’t overdo it but was still in the water for 45 minutes! Too bad i got in a fight with my bra in the tiny cubicle with moist skin… Which took me way too much to get on (or off at that point)… then i was cycling home and when i got outside it was warm and sunny and i was still hot from inside so i decided to take off my jacket… but it wasn’t as warm as i thought so i cycled way too fast to stay warm (which i didn’t really realise until i was almost home)
)))
