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Living with Psoriatic Arthritis (PsA)

Another probably lengthy rant from me


#41

What both Sybil and Seenie said. I get the sheer hard work of fighting for help. But by definition, persistence wins. It just does. More hugs Cynthia and know I’m thinking of you too.


#42

Thanks you guys! So much! I’m just so tired… I need to buy a winter coat… I’m already freezing when it’s not even freezing temperatures yet… I need to work 2 days a week I need to go to rehab 2 days a week… I need to swim and work out and and and and…


#43

There you go - that’s called persistence - just shorten the list a little. I’d start with the swimming and working out or preferably just walking. Don’t know about you but when I’m physically tired it’s a better tiredness. More hugs Cynthia.


#44

So… after tall that and waiting she is letting me go because I’m at the rehabilitation… And that’s supposed to be enough… I understand one hour with her isn’t enough… At least I’m no longer her responsibility when I do kill myself…


#45

:eyes: But you’re our responsibility so please don’t.


#46

I won’t… I just don’t know what to do… There’s 2 meetings with a psychologist in the next 3 months the rest is all other things… It was nice to talk to someone once a week who made me feel like I wasn’t crazy… I don’t talk about anything real in groups and everything is in groups there…


#47

I second @janeatiu. Is it possible to see a psychologist privately? I chose mine (as in interviewed her, yes really) and paid her per session (once a week mostly) for around 18 months. For me it was the best money I ever spent.


#48

I just ordered a winter jacket online after 2 years of needing to do that and a month of being really really cold when I go outside… I’ve spend all my “getting stuff done” energy and I really need to buy bras too… I’ve been in bed all day crying… I need help with getting help… But that doesn’t exist… I’m just pulling the covers over my head and pretend the world isn’t real… I’m not going back to work this week… And probably not next week either…


#49

Oh Cynthia, we care. We worry about you, really we do. But what can we do to help?


#50

Yes we do care Cynthia - an awful lot.


#51

I wish I knew… I’ve been home from work all week… and it feels so much better… I’m sickish… not really bad just get dizzy and nauseous when I move too much (like in a bus or me walking and making turns)

I feel fine when I’m sitting on the couch… But then I got a package yesterday and “ran” to the door… then after 10 minutes he was back because he had another package he missed earlier… And when I got it from him he asked to scan the other again… So I “ran” to the door and back 3 times… I was exhausted…

I tried sending you a message on FB messenger when I was having a huge panic attack… I opened every app that lets me contact anyone who I know would care… but I couldn’t… I didn’t know how to explain… And just saying I’m not Okey isn’t enough… I just don’t have words when that happens…


#52

Oh gosh Cynthia, this really is a hard time for you… great big HUGS!!!


#53

My head is so full with everything I should say to my reumatologist tomorrow… How I have so many red flags that I have no clue which ones I should mention… How everyone I go home I remember something that always hurts me so much that I can’t imagine forgetting about it… (Really actually I’m not making this up!! Stop rolling your eyes and secretly thinking I’m just a cry baby hypochondriac…)

It’s all my fault that he can’t help me… I should be an amazing advocate for myself otherwise is all my fault… (I’m sorry it’s an amazing post but it just made me remember how I can’t do that… And I can’t expect people to help me if I don’t tell them what’s wrong…)

I can’t sleep! I’m so worried… We had a snow storm (for Dutch standards… our infrastructure isn’t build for snow at all… let alone 4 inches in 24 hours) and if I went to Amsterdam today it would be damn near impossible to get home within 4 hours and without having to stand most of that in the cold… I’m leaving an hour earlier then normal tomorrow and I’m always 20 minutes early… And still I wonder if I should go earlier… Even though they say it’s going to be fine tomorrow since there’s no more new snow…

If I miss my appointments they won’t care… They’ll just make new ones in a couple of weeks and be proud of themselves for getting me in early… And the group meeting will just be gone and I’ll never be able to do that one…

No one will care and it will be my own fault… And then I’m not allowed to hate myself for it because it’s not my fault?! I’m not allowed to do anything…

And now I’m thinking maybe it’s a good thing I won’t sleep… Maybe I’ll have a complete meltdown there tomorrow and maybe someone will notice I’m drowning…

But I know myself… I’ll somehow forget again how bad things really are because people paying attention to me makes me feel better… And I think they are perfect so will understand everything I say exactly as I meant it… And then on my way home I’ll have another panic attack because I completely failed at letting them know how I’m really doing…

I’m going crazy from having conversations in my mind I’ll never actually have and then thinking about telling that person how I’ll never have that conversation with them but then I’m not going to tell them that either…


#54

Goeie morgen
Yup, I get what you are saying. And now here’s what I think you should do. Now. Before you get to the appointment.
Write
It
Down
In
List
Form.
Take the list with you. Read from it if you have to. And if you melt down … well, you just melt down! And then maybe they will see how serious your suffering is. Maybe you will get an emergency admission to a place where you can rest.

I would hazard a guess that a lot of us here have melted down with health care providers. I know I certainly have. And if anything, it makes them sit up and take notice.

Take your list with you. Let them have it full force, the way you actually feel. Get angry. Cry. Whatever … you deserve more and better treatment than you’ve been getting. I mean that, and I think everyone here would agree that your needs have not been met. That is not your fault, but now put yourself in a position where you make that clear.

I’ll be thinking of you tomorrow.


#55

Hi Cynthia,
I know your insecurity makes you think that people would roll their eyes at your comments, but I highly doubt anyone here would. Try to trust that this is a safe place where people aren’t judging each other and we are here to listen and offer support and I think it’s good that you’re so open here–just give yourself a pat on the back that you’re trying to get help and you’re headed in the right direction in that respect–follow Seenie’s suggestion and make a list. It is SO HARD to remember everything you wanted to tell the doctor if you don’t have a list. It’s also extremely hard to bare your soul to a doctor–I always get the feeling they listen to so many people’s problems and complaints and they don’t need mine, too. But, they’re highly trained professionals and they get good pay for seeing patients, and you need to realize that your health depends a lot upon what they can do for you. That’s where it’s important that you get the message across to them how serious this is and you NEED help NOW.
Please know that we are on your side and cheering for you. You have been so supportive and caring of others in this group and we don’t want you to feel defeated.
I hope you are listened to today!


#56

I was also going to tell you - write it down!

I start well in advance of my appointment, usually at least a week or two in advance. And sometimes I do read from my list. Make sure to include not only your symptoms but what you cannot do as a result.


#57

I don’t use the list… the things on it feel silly and not important…

The thing between () was meant for the doctor… That’s what you read from everyone… How horrible doctor’s are and how they dismiss you… When I say something it never gets received the way I meant it… It doesn’t matter if I make a list… He won’t understand what I’m trying to say but will be 100% sure I meant something else…


#58

They rescheduled the 2nd meeting so now instead of having an hour extra for the snow I had to leave 30 minutes earlier then I planned… I need those 30 minutes to be able to pace myself!!! I already blew through all my energy today… and I have to talk to those people to try and fix everything since now I won’t be able to see the nurse and then they’ll want to reschedule the doctor because I didn’t see the nurse…

I don’t know how to deal with this!


#59

Turn out they moved the date too… now everyone is going to laugh at me for being a stupid idiot but I didn’t have time this morning to actually look at the new schedule… I’m almost there and will be there for 5 hours because I had to move the doctor to the end of the day because of that stupid meeting…

I don’t know how to deal with this… I just want to give up…


#60

Hi there Cynthia, so you have some time to fill in while you wait for your appointment, yes? Do you have access to a pen and two pieces of paper? If so, write a new list out while you are waiting for your appointment… on the first piece of paper list ALL of the issues you face (from stiff and sore fingers, to anxiety, depression, fatigue, etc etc)… don’t miss anything off the list. Next look at that list and note beside each thing just what that stops you doing normally (for example: for sore fingers - takes 10 minutes to tie shoe laces… for fatigue: get tired after 5 minutes walk… these are just ideas to help you formulate ideas for short notes). Now take out the second piece of paper and transfer the things on your list onto the second page in order of most severe, to least severe, and include the notes about how each thing limits what you can do, or makes you slow doing it. Take the second list with you to your doctor, and hand it over for him/her to read… they will read the worst things first and decide which of those they wish to discuss today… then ask them to keep the list on your file so you can both refer to it next time to see if anything has changed between appointments.

All the best for your appointment today!! Thinking of you!!! Great Big Hugs