7 long months..: Hi everyone, I've read a lot of blogs... - NRAS

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7 long months..

Trina2503 profile image
17 Replies

Hi everyone,

I've read a lot of blogs on here and thought it was about time i added my own!

My names Katrina and i'm 20 years old. I was diagnosed with Inflammatory Arthritis 7 months ago, and to put it frankly its been hell.

I have had to take a year out from uni, and as i was studying dance i am having to return to study a different course.

I have constant pain in both my knees and ankles, as well as my neck and left hand side of my jaw. Then i have random spurts of other pain in fingers/toes/wrists etc.

I am currently on what i feel like is a cocktail of drugs: prednisolone, naproxen, methotrexate (sub-cut 15mg), hydroxychorliquin (200mg) and folic acid.

I take some comfort in reading how frustrated everyone else feels as everyday i question why i am bothering with such extensive drug treatment when since i was diagnosed things have only got worse for me, pain has only intensified. I can't help but feel my life has been taken away from me, and although i know you have to be patient with such a disease i am so fed up of feeling so useless!

I have to say the rheumatoid department that I am with at Bognor Hospital is fantastic. For my next set of treatment i am being admitted onto the ward for around 4 days of rehabilitation and education. I suppose i have to hold onto "things can only get better".

I find all your stories such a support, so thank you all!

Trina

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Trina2503
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17 Replies
aligator profile image
aligator

HI Katrina, I so feel for you as I too inflammatory Arthritis, diagnosed may last year whilst stay at Bognor, I agree with you Rheumatoid Dept are briiliant. I am not settle on meds yet so life frustrating. I just want to send good wishes & hope stay in unit brings you support & more comfortable life. I find shouting at the sea helps & keeps more harmony in the house!!

Good luck

Aligator x

Trina, you are so young to have got this diagnosis and the fact that you were doing dance. This has been harsh.

I am on a downer at present but i know from the good people on here - see Wilby's blog - that life can return to some sort of normal and that the medication they give will eventually work.

What are you returning to study?

sylvi profile image
sylvi in reply to

Mads lets all have a pity party together shall we. I'm feeling crap so we can all drown our sorrows together. xxxxx

in reply tosylvi

Sylvi i would be delighted to - picture me, i am the one in the corner listening to Leonard Cohen in the dark mumbling incoherently about drugs.

sylvi profile image
sylvi in reply to

I can't stand a lot of noise,don't want to go out,mind you until thursday i won't be going very far. Mine song will be harry nilson,without you.

helixhelix profile image
helixhelix in reply tosylvi

That song! Remember it well, my first teenage disco and getting the last dance with boy of my dreams. Happy memories... Px

sylvi profile image
sylvi

Trina, first welcome,sorry that you have had to find us so early in your life. Little em is someone you need to talk to as she is only 18 and she is i think on meds to help her. It was a long time coming for her,so i know it isn't easy for you at the moment. I think that you are having infusions to try and get your ra stabled. The rest will do you good and while your resting,try giving some thought as to what you now what to do at uni.. You have to be very good to get into uni,so start looking and thinking about what courses are available to you with regard to dancde or there might even be something else that might interest you.

You are not useless trina,you are young and i bet you want everything yesterday,i know i did when i was 20. You will get there and there is life with ra,just a lot different to what you had planned. There are ways round this disease. You will have to pace yourself,do a bit rest a bit. There will be things that you find you can't do, and believe me that will soooo b"""y frustrating. You'll wander why bother,but i believe that we are only given what we can cope with,mind you there have been times even i have wondered how.

There are a lot of utensils that are on the market to ease your way through life. This is an example,litter picker,get them through the disability shops and you'll pay over £10, go to b&q and you can get a better one for £6.99. You will have to look around.

Hopefully you will get your meds sorted out sooner rather than later,but we are all here for you if you need to ask anything,or rant,or celebrate something. We will always support you.

Welcome again

sylvi.xx

Trina2503 profile image
Trina2503

Thank you both, its lovely to actually hear from people that aren't family or friends telling me that things will be ok. I want to scream at them all 'YOU DON'T UNDERSTAND!!' but i know thats all they can really say.

I have made plans to return to study drama, hoping with all my heart that things pick up by September

sylvi profile image
sylvi in reply toTrina2503

They will trina,just give it time. We all get there eventualy...

It is a long journey but you will get there! maybe they need to change your drug regime?, we go through a range of emotions , only people with the illness can truly understand ! x best wishes

Alison

thinkpositive profile image
thinkpositive

Trina

You have hill to climb, step by step you will reach the top. All the very best to you, i hope you suceed in whatever you do.BEST WISHES PATX

thinkpositive profile image
thinkpositive

Trina

You have hill to climb, step by step you will reach the top. All the very best to you, i hope you suceed in whatever you do.BEST WISHES PATX

Trina, I've found it hard enough being diagnosed at 43 and can only imagine how you feel at 20. It's great that you have found this site so you can learn as much as possible about your condition. The more you know the more empowered you will feel. I'll keep everything crossed for you that things are better for you by September when you take up your drama course. Keep in touch and let us know how you are getting on.

Paula x

Hi Trina - ditto to what everyone else has said. I'm at least really pleased to hear of a good rheumy department that are being so thorough and supportive. My own RA experience has not been good re services locally and my condition is exacerbated I'm certain a lot by the lack of treatment and support in the area I live so at least you can console yourself with this. I have a 20 year old son and would be so distraught if he developed RA so feel for you and your family. There are other young ones who visit this site and are usually an inspiration to us all so please do become a regular contributor too. Tilda x

Gina_K profile image
Gina_K

Hi trina,

So difficult, but you will get thru and lots of great options out there, with more and more coming on stream jak inhibitors. Included.

You will get better, it's just such a shock, glad u getting some value from this site.

Xx gina

Trina2503 profile image
Trina2503

Thanks again for all your comments. I know it will be a long battle and in many ways i have been fortunate in my experiences of such a nasty disease, it just a case of staying positive in that mind set.

re Tilda i have had to do a fair amount of complaining to be offered the in-ward stay but i am thrilled to bits that i have finally got there! I was glad to read some encouraging news for you on your blog today too. xx

helixhelix profile image
helixhelix

Hi Trina, it's good that you're fighting your corner too. I think you have to push with this disease. I know 7 months seems like forever, but it can take a while to find the right balance of drugs for you. It took over a year for me, but the difference when it came was magic! By that point I was really despairing and couldn't imagine that thinks would ever turn around. But they did. Keep on hoping. Pollyx

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