I want my life back .. rant

madness1985

Hi,

Im sorry i need a little rant. Im 24 and i was diagnoised with RA earlier this year by my rhmer. Im now on a drug and steroids that are not working im still geting flare ups every day, my hands/feet r constantly swollen n red which has resulted in me not being able to drive so i crnt go out unless my partner is out. I have no money of my own which is really depressing esp with it coming close to xmas and i wish i cud just go out with my friends! Its not just that but more than that im house bound when my partner isnt about. Im ment to be getting married which i am very excited about but i just feel like i crnt get excited because i crnt find a venue thats friendly for me i have been luking for dresses and my dream dresses are too heavy for me cuz of having ra in my neck/shoulders

I just feel so low and lonely and isolated and just dont no what todo with my life ..

Wonkylegs

Hi,

so sorry that you are feeling so low right now - but it is totally understandable!!

first of all, you are very NOT on your own with this, and you have found this site so that is a great first step.

Have you tried ringing the helpline? I am sure that they would have some suggestions to make about your problem of feeling isolated, and also may be able to suggest ways of coping that you hadn't thought of yet.

also when I rang them it was great because they all have arthritis, so they do understand how horridly invasive it is on our lives at times. I also got loads of info from them, which is really good.

keep posting on here and I am sure there will be others replying to this soon.
best wishes,

Wonky

skezier

Hi Madness,

I echo what Wonky said but just wanted to say if your drugs aren't working maybe you could ring your rumo's secretary and ask for a urgent appointment? I really hope things will get easier for you soon and that your rumo will give you some treatment to bring the ra under control.

The helplines will be able to help you much better than me but I am sending you a cyber hug and do hope it can be sorted out for you soon. Take care Cris

robertls

Hiya Madness..

Rant away young lady.......

We may not be able to help.....But we'll listen

And be here for you, as best as we can...

We'll offer advise based on our own experiences........

Rob x x

vonski

Hi

Sorry you're feeling so low right now, as others have said you could talk to the help line. If you feel like the meds aren't helping please talk to your Dr. or Rheumy about trying different ones. Sounds like you are having a bad flare up right now which will hopefully settle down before too long. Keep coming on here and talking things through.

Love
Vonski x

elnafinn

Aw, Madnesss, I am so sorry to read how you are feeling and at your age it seems so cruel and with a wedding to plan, that should be such a fun, happy time. I remember you posting about getting married and how you knew what dress you wanted and so on. That was a real upbeat posting from you. You really do need some help fast, at 24 years old it is most unfair. I really think you should try to get an urgent appointment with your rheumi. Have you a rheumi nurse you can call? I so hope something positive starts happening for you soon,

Luv and hugs
Elna x

woodbon

Hi, I agree with the others; all I will add is that this is a stressful time for anyone. My disabled neice settled for a lovely 3/4 length wedding dress with a tiara and flowers. She looked lovely, she found it easier to walk in as she has balance problems. Also she found some white satin shoes with very slight heels and wide across the toes. Good Luck! love Sue

yoshimi

hello,

I just wanted to say that i think iknow how you are feeling. I was 25 when I was diagnosed with RA. The first year or so was really hard going and when I think back it's difficult to remember how I coped. I was off work for about a month initially but when i returned and work were being tricky i was off again for about 6 months stuck at home laying around in bed mostly.
I hope that things will get under control for you soon, I am now controlled with sulphasalazine and hydroxychloroquine, and consider myself to be lucky - It is all such a balancing game though.

I think they should try to adjust your meds, my rhuemy department has a helpline where a nurse will get back to you?

All the best,

Sarah x

madness1985

Hi All,

Thanks for your messages. I have a rhmy nurse and because im currently undergoing tests with the possibility of heart surgery they can not start any strong medz as it could have a negative results on my heart and surgery, it will aparently take up to 6months for me to recover from heart surgery already so at the moment im in no mans land quite literally its so heart breaking i just feel so low and so reliant on everyone around me.

My dream is the typical big princess dress but they are so heavy its just not fair. Ive found a company that hand made shoes to your spec so ill see them when i go down to london for my heart appointment next month and see what they can do for me.

I just hate the fact i have nothing and crnt see a light not even a twinkle at the end of the tunnel all i see is a very black hole that has no end.

Thanks for all your messages xx

annie_mial

Just a thought - what about a matching two-piece? My daughter settled for that, it looked like a dress and she looked lovely. No weight on the shoulders and easier to manage the train. Hers was ivory trimmed with lilac, it was beautiful.

Annie

jenzie06

Hey sorry to hear your feeling so so crappy at the mo.
I got married recently and was so worried I wouldn't enjoy the day because of the RA. But it was lovely, tiring but fun.
My OH is v active and it got to about 10pm and I'd had it, really tired, wanting to lie down. (By the way I had a lie down between dinner and speeches behind the top table and no one knew!!).
My OH wanted to continue to dance (I couldn't - sore feet) so my sisters, cousin and I went to the honeymoon suite for a lovely cuppa!
I went on the basis that it was MY wedding and I could do what I wanted.
I can understand feeling really low, I rely totally on OH for money (my parents help out - makes me feel really good, not). I was medically retired in June and haven't worked since last Christmas. This latest flare has left me unable to dress myself easily or drive the car. I'm 26yrs old.

The best advice I can offer is to speak to someone. Rheumy nurse is always good or GP. I always find that when I see the docs I put a brave face on. Its importnat for them to see you at your lowest.

Keep your chin up, sending you a non painful hug.

pammi69

Hi Sarah
can i ask how you got RA, did it just come to light, how are you coping with sulphasalazine, is that enough, i have just started it this month and i am on 4 tablets a day. I have some good moments and then it just starts to flare up again, I am in pain every day, is that what you experience.
I am 39 and got if from a failed IVF cycle and the drugs, it bought it out of me, I hate it.
I want to go through another IVF cycle but with all the drugs i am on I dont think i can cope.
thank
pammi