Not copeing very well , I don't know where to turn .

[Jenny06xx]

I still feel awful , I had a 3 unit blood transfusion last week an still I don't seem to be any better .

I feel so ill for some reason , I've got bad abdominal pain bad diarrhoea , pain all over my joints and my muscles keep cramping an getting stuck ( really painful but only for 30 seconds or so ) .

My head is banging constantly an my throat is full of ulcers so I can't swallow properly .

It's sooo close to Xmas an I don't know what to do ! I know I should be back in hospital getting this sorted before things get worse but then I feel so guilty that my husband won't b able to work an have to look after the kids an then Xmas will b very tight ! Or not at all ! ( he's self employed )

Trouble is I'm so miserable I'm taking it on the ones closest to me . I'm trying so hard to keep it together an ride this flare through but I just don't think I can , I'm exhausted , fed up and in pain.
My strong painkillers won't touch the pain an so I know the next step is hospital coz my gp will say sorry there's nothing more I can do for u off u go to the hospital .

It's not what I want this side of Xmas an I certainly don't wanna be in there over Xmas but if I feel like this now how miserable is my kids Christmas gonna be anyway when Im so useless tired an snappy

Sorry for the rant
Jen xx

 

[beth]

Sounds like really do need to be in hospital, and kick some arses in there because it doesn't sound like you're being looked after properly at all. Your drugs list is incredibly mild for your symptoms.
:ghug:

 

[robbo87]

I'm so sorry you are having so much trouble and are so unwell. No one wants to be in hospital over christmas and i can understand why its hard with your husband being self employed, but my advice is you will be doing your self no favours at all by being brave and fighting through it. If you go to hospital now theres every chance you'll be home for christmas, a few years ago i had a very similar flare up with a lot of the symptoms you are talking about and around this time of year too, they sorted me and within a week I was good to go home.

I'm sure your husband will understand, And would your kids rather you be looked after and getting better or in pain and struggling to cope?

I hope you are feeling better soon!

 

[Tay]

Hi Jenny
You are not far from me! I would suggest you involve your GP - he may suggest other options rather than an admission. Also, I wouldn't reduce the prednisolone too soon. You could also contact the NACC - they may be helpful and I think they have a hardship fund. Kind regards.

 

[Jenny06xx]

Thanks all of you xx

Regarding my med list I'm still on 25 mg pred I can't reduce without being ill again, and all the rest listed .

My new gi will see me in jan an says it's time for aza or 6mp ( I think) .
If I'd stayed in hospital like I should have I wouldn't be in this mess now ! Hindsight eh!

Tay I wouldn't say I'd need help from the nacc in that way, we can manage if his boss will let him work in the school hours etc it will leave us nothing to spare but not in desperate need as such .plus his mum can help out if were really stuck , lately she's been amazing .
an to be honest we have done alot of Xmas shopping , it's more about me feeling so bad about going in an leaving my hubby to it all sooo close to Xmas, as long as there's food warmth an a roof over our heads I shouldn't care about " extras" an really I don't , as long as my kids and family are happy an healthy that's all that matters an I'm not so I need to make my mind up an sort things out soon .

Ive got swelling and inflammation in and around the area I had the blood transfusion to the point I can't bend my arm or straighten it aswell , any ideas what this is ? The transfusion was mon 5th so I'd have thought it would be better now .

The abdominal pain is right side by the belly button also right down in the ileum area and some on the left lower side , plus alot in my back .
My diarrhoea is no better an my stomach is really hot to touch .

I'm on anti biotics ( flagyl and amoxicilin ) so Im guessing an infection would be dealt with by now , I just don't know what's wrong with me !!!
Sorry ranting again
Jen xx

 

[robbo87]

Thanks all of you xx

Ive got swelling and inflammation in and around the area I had the blood transfusion to the point I can't bend my arm or straighten it aswell , any ideas what this is ? The transfusion was mon 5th so I'd have thought it would be better now .

I wouldn't want to say for definate but in the past when I've had IV Transfusions its happened to me and theres a possibility the vein could have blown? so all the swelling etc will eventually go down. Or maybe even possibly a bit of an infection at the IV site, Id say its unlikely but its possible.

 

[Ally]

Hey Jenny! Hang in there! I.m facing hospitalization at the moment too. It.s hard to deal with everything AND feeling sick all the time. :hug: Hope you get the right meds and feel better soon!

 

[shamrock15]

Sounds like you also need some good blood work done - a lot of your symptoms can be caused by vitamin, mineral and electrolyte issues (B12 is an easy target for these, amongst many others). Tell your docs ALL your symptoms, and keep after them to explain what they are doing. Write out a list so you make sure all of them are addressed. Take care.