Before I begin I once again want to thank all of you for your supportive words, your shared experiences, educated advice and not forgetting kisses and hugs, thank you all so much.
Well yesterday my 92 year old Daddy drove me to the Rheumatology Ward, I had my eyes closed for most of the journey, bless him. I'm unable to drive due to full body pain to see my nurse angel, Bronagh. She was waiting for me when I arrived. We chatted for a while as she wanted to know everything about what had been happening to me over the past few weeks. She went then and got me a double dose of whatever you call the steroid that is injected. She said I was in a very bad way but that she had seen me worse, just the once though.....back when I had to be off all meds before going on Bio's, that took nearly 9 months as I had to wait for funding, I'll never, ever forget it. She reminded me too of the first time I came back onto the ward just after I was on humira and feeling great. I spoke to her but she didn't know who I was! She hadn't a clue who I was she was so used to me bent over in the shape of a question mark!
We talked then about where we go from here. She said that I had enough steroid in me to keep me going, hopefully, for the month of September. After that I will go back to the clinic for a 'tester' of Gold to see if I will tolerate it.......I don't have a great history for tolerating treatments.......so we'll see what happens.
They she went onto the thorny subject of 'me and Prednisolone'! I hate them, she knows I hate them and what they do to me......they make me clean crazy is what they do, even the smallest dosage of 7.5 leave me manic and bouncing off walls. She told me straight that if I didn't go back on steroids I would go back to the way I am now......."the choice is yours".......she can be stern when she wants. With no where else to turn I reluctantly agreed to go back on the dreaded Prednisolone while waiting to start the Gold injections. The hope is the Gold will work and I can come off the steroids.......not holding my breath.......I have a terrible history.
To put things into perspective Bronagh told me a bout a wee girl of 20 who is the only other patient she knows of with the same history that I have. 20 years old, imagine.....made me think. I'm 66 and thought I still consider myself 'young' this wee thing is 20 and should be out with her pals enjoying life. I had my time doing that, this poor child is being robbed of her chance to live her young life........there is always someone worse off isn't there?
So that where I stand now. When I opened my eyes this morning I knew my pain had reduced.....it is sort of 'blotchy', here and there if you know what I mean. My upper body still isn't strong enough to drive but I'm hoping over the weekend it will improve.
One more thing before I end this sage......Bronagh told me that the reason it would be the end of September before she could see me again was because she was the only specialised Rheumy nurse on duty in the clinic. There are normally three, one is on maternity leave and the other is off sick so she is doing the work of three specialis nurses. So the next time you hear some one having a go at the NHS remember my Bronagh keeping the ward open on her own! Our health care staff are second to none, IMHO.
All being well the next time you hear from me will be after my cruise........ill have a drink on all my friends here on NRAS. XXXXXXXXXXXXXX