Hey everyone!
Thanks for all the well wishes it means alot!!
Well I escaped for the weekend and am up at Duncans as of last night - hooray!
Will tell you I have been a very busy girl this past week!
Rheums reg referred me immediately on monday afternoon to the in house pain management team who saw me wed afternoon. They made immediate changes to my pain meds and gave me alot more control over the doses I take of the Tramadol. Am now allowed up to 600mg a day and have worked out with them that I take 100mg x 4 daily and then can have up to another 2 x 100mg for breakthrough pain on the arthritis front on top when I feel I need it. It has much less impact on my gut than codeine does on the constipation front so am happy. They also increased my nerve pain meds too on the spot and stopped the codeine my rheums reg wanted to me take.
On top of that they organised a TENS machine which I started to use Thurs evening and it is really starting to help with the constant intense shoulder and back pain!! I can wear it all the time except when asleep (tried using it for up to an hour and the pain would come back with stabbing vengence) as they are concerned folk accidentally hit the button and turn it up without realising so they just want us to be in complete control and ensure our safety. It has 2 settings I can use, which, one is a constant sort of fizzing feeling and the other is more pulsing. I have control over the intensity of both, the length of the pulse/fizz beat and also how fast it goes and am to play with it over the weekend to fine tune for me as an individual.
I have been up since 4am with the pain in my shoulder but put my TENS on once I came downstairs and can feel it kicking in now (about 45mins after starting it). Helps me to relax my shoulder alot and eases the pain. They also worked out with me places to put the gel pads it uses to help the different areas I have pain in. So a positive start on the pain management front.
They are also going to refer me to the outpatients pain management team for when I get home so the help and monitoring continues.
On the physio front I had 3 hydro therapy sessions last week and have 4 planned for next week. The pool is 35 degrees temp wise and because I shook for about 90mins after my first session which was gentle they really really eased up on me and I get approx 30mins in the pool now with 20mins extremely gentle exercises and 10mins of floating to relax. Started to feel the benefits thurs morning a bit from it and the warmth of the water is helping my joints to move more.
On top of that the physio has given me a list of exercises to do across the day in my own time, speed and quantities to aim for. He also suggested I get a bowl of warm water brought to me before I get out of bed in the morning. Then once I have done some back exercises in bed I get out onto a chair beside the bed and put my feet in the bowl of warm water. Once settled I then do gentle exercises for my feet and ankles and it is helping to loosen them so I can walk better first thing!!!
The occupational therapy team also have had a huge input into my revamp! They have assessed me washing and dressing yesterday. Worked out aids to help me wash, dress and undress which I was able to bring home yesterday! They also have taught me retrograde massage to reduce swelling in my joints AND took me for a total relaxation therapy session yesterday before lunch for an hour LOL Talk about pampered!!
Next week they are going to make new splints for my hands to help support and rest them at night. The splints I use now are uncomfortable and are made for general use and lifted straight off the shelf. My new splints will be made and molded specifically for me!
Also next week they will be assessing me for kitchen and household things and driving to see what equipment and help I need there.
I am having an MRI of my wrist this tues after my remi but the pain team want to extend it to my shoulder and back so the docs on fri said they would look and see if it was possible.
The gastro team are also going to come and see me and they are going to see if they can get my consultant some time to spend with me there too.
The methotrexate is impacting on my liver again so we are taking it gently at the mo but so far havent had to stop it.
The pain nurses are going to get their consultant to see me too next week.
So overall I am being attacked from all angles and starting to see some changes for the good. Can feel I am straightening up more now when walking too and that I am in more control of helping my pain to ease to a more managable level. Just cant believe the difference already!!
I know they will all work out what I need to do once I return to "normal" life but I have to say I feel tons more positive because I actually feel less powerless about my situation now having received the right help for me as an individual. Does that make sense??
On the work front.. the occ health team from my new job phoned me on thurs and after talking things through they think their consultant may not want to physically see me for a medical because I have been so upfront and honest they say!! They are going to arrange for me to have an ergonomics assessment once I start to ensure I get the right chair and computer mouse etc for my needs.
Then the HR dept from my new job phoned fri and asked me to go through the paperwork they sent during the week, over the weekend, and ring them next week to work out whether I need to be present to give them identity documents or if I can just post them. So things are moving well on that front too eh?
Will keep you all posted when I can. I go back into hospital monday morning at 8am as my first hydro session of the week is at 0845! To say I am keen is putting it mildly LOL
Thanks again everyone!! ((hugs)) to you all.
