Had a letter yesterday.........

[sylvi]

I had a letter from my rheumy about blood tests i had before i go on biologics. The wording of the the letter goes;

Your recent blood tests before starting Baricitinib showed POSITIVE POOR T-SPOT TB ASSAY. I will ask opinion from respiratory team before starting Baricitinib.

I now doubt i will get this drug before Christmas if at all now. I am not going to worry about it now as i have enough on my plate as it is.

As you all know my dh had a Colonoscopy last Friday and they took 14 polyps away from his colon. Well he recovered well. Well it was a shock for me how my body reacted to him being in hospital. I had to do all the driving as he couldn't for 24hrs. I did it and would do it again in a heartbeat,but it was so hard for me. I think since he has been home i have been in a flare. Sunday he went to the Tattoo in Birmingham and i was left at home( i don't go anymore,it is too much for me) I cooked lunch for my friend and i,and if things are going to go wrong it will do. The element went on the big oven and tripped out. SO i put it in the little oven at the top heat thingy(well i thought i did) the meat was almost cooked and i put the roast potatoes in with the meat,well they didn't cook so i put them in thr chip pan to cook them. My friend and i had a good laugh as she has a autoimmune disease. Then my other friends called round to sit with me and then the next thing i knew hubby was home.

Well i have come to realise My health is a lot worse than i thought it was and i am slowly losing my independence which i have fought so hard to keep. Sorry for such a long post and i could have written more. Thank you for listening to my ramblings,it has taken me a while to say this.xxxx

[charisma]

Hi Sylvi, so glad your hubby is recovering well. I am sure many identify with the slow loss of independence.

It is very hard to accept and to remain cheerful.

Love the photo! Xxxx

[sylvi in reply to charisma]

Thank you darling.xxxxx

[Nessa28]

Morning Sylvi , glad your husband is on the mend . I'm sorry you feel rotten . I can't say a single thing that can improve anything but I am sending you massive hugs 🤗 xxx

[sylvi in reply to Nessa28]

Thank you Nessa hugs got here.xxx

[Nessa28 in reply to sylvi]

Xx

[ruth_p]

Big hugs to you Sylvi, fingers crossed you start the biologics soon x

[VeronicaF]

big hugs sylvi, I am glad your hubby is on the mend, I know how you feel, feel that too at the moment, but keep strong, and its lovely how you have all the love and support around you to help you keep strong, lots of love to you xx

[fastball]

Hope you are feeling a bit better. It comes to us all, I hate being dependant on my family as they all have work . If they bare ill they can't help because of auto immune being low.

As soon as I can I shall be up doing for myself.

Chris

[sylvi in reply to fastball]

Its a blooming nightmare doesn't it.xxxx

[Downtime]

So sorry to hear how you feel Sylvi. It’s hard accepting the limitations this awful disease puts on all of us in varying degrees and I think loss of independence is the big one! G lad your hubby has had his polyps out and all was well. He’s your rock. xx

[Natalie-Lhianne]

Sylvi you always take the time to reply to others and seem like such a selfless soul and very strong.

Wishing you well and sending positivity your way. Xx

[sylvi in reply to Natalie-Lhianne]

I try darling if i can contribute with an answer or just a hug i feel it helps someone els. Also you will never see me say get better soon as we won't get better so i say brighter instead darling. All the answers i have received does help in letting me know i am not alone.xxxx

[helixhelix]

It's hard to feel you're loosing your independance, but it sounds like hubby helps you with loads of love & affection so does it all willingly.

Sorry about the blood test result, looks like you might have to do what I did which is have antibiotics for months just in case I had latent TB. Horrid, but I was allowed to start my new RA drug after just a few weeks even tho' I had to keep taking the antibiotics. So you might not be delayed for that long.

[sylvi in reply to helixhelix]

Thank you Helix, i am not going to worry about it,but i am calling the rheumy this morning as i am suffering so much. I was taken off sulpha and hydroxy as they weren't working. My hubby is a real diamond and i don't think i would be here without him. I love him dearly and he keeps me strong.xxxxxx

[weymouth321]

Evening Sylvi, so pleased your husbands recovering well, giving you a huge gentle hug xx

[sylvi in reply to weymouth321]

Thank you and thank you for the hug.xxxxx

[MissMinto]

Hello sylvia, glad your OH's on the mend but sorry to hear you're going through such a hard time - is there any chance you could get a general steroid jab to tide you over until TB stuff has disappeared and you're on new biologic? They're my go-to solution whenever I find myself in between a rock and a hard place. X