I would like to say Happy New Year to everyone and am pleased to report that for the first time in 2 years I did not have to go to hospital
My Rheumy had booked me an early apt before the Festive season so that they could keep monitoring my progress. Transport was booked and according to hospital procedure, because the department mainly see ambulatory patients, and I'm a stretcher patient, transport department is required to inform the department of my arrival and then Rheumy department would make necessary arrangements in readiness for me. Then once done, transport then return call to confirm your appointment.
From my end, everything that's needed to have been done was done. All that was left was for transport to return call that Rheumy dept would be ready for me. But no, on each and every occasion inclusive of this incident, every time this particular staff member handles my transport bookings something has to go awry - transport either late, not turned up, or she fails to book return journey within the requisite time and I'm left lying on the hard couch until the ward is closed. It's then that night shift has to take me home. On one occasion, 3am in the morning! This is not an exaggeration!
You can well imagined the discomfort, pain, embarrassment I've had to endure waiting on transport - on occasion I was so stiff had there been any immediate movement from the couch to the ambulance stretcher, My body would have gone into shock. It took the experience of a very senior and mature nurse when she recognised the error that about to be made to shout No! Then she taught us all that in the future should this happen again, what needed to be done to prevent what could easily have been an emergency situation.
I've never seen or met the controller that works in the Transport department at this hospital but she has a very distinctive voice and for the life of me don't understand why she should treat me in this way. Despite management speaking with her about it, the situation has not improved.
I have even changed hospitals because of this constant stress and pains endured as a result. However was forced/encouraged to go back there bcos that's where all my notes are.
Crying- because because I'm a very slow learner to grasp things and my brain shuts off because I can't take it all in. The varying complexities of my situation that has suddenly come out of the blue. I don't know how to deal with it. What questions to or not to ask. I shut it away. I want it all to go away. Just wish to wake up one morning and wish it was all a bad dream. Get my life back on track and move on.
People look at me and say after she doesn't look sick! I ask what does a sick person look like? I hurt all over one minute. The next I appear fine. The other minute I am stiff as a board the next I have a fraction of movement. My fingers and toes goes different shades of colours whenever there is a flare. I have this crushing crunching pain in my chest that won't go away as if bone rubbing against bone. I have pain in my right hip. Can't weight bear in neither hands nor feet at times. I won't even go into the issues regarding my neck and the difficulties in swallowing. My memory at times goes blank and now my eyes are becoming blurry. My skin is also another matter not to mention the dizziness from the Meniere and sticky blood.
I honestly thought I would be going forward this year but .... my joy is short-lived. I am now prescribed 3 new drugs: Dermovate, Mepacrine, pro topic ointment!
So, this apt scheduled for this afternoon was very important to both me and the consultants in question.
This transport controller literally cancelled transport and then lied that Rheumy department did it! Rheumy department knew nothing of it as they were expecting me to be there!
If it was within my power, and capabilities I would make my way there but I can't go because I'm bed bound at home and they don't come out to see me!
What is it have I ever done to her or anyone to treat me like this? I don't wish even my worse enemy to have what could easily be described as "silent killer diseases".
I am crying. Sorry George. Sorry Howard and Lupus Admin staff but much more need to be done to help us Lupees/Rheumy/Hughes Syndrome+ connective tissue sufferers. I am just plain tired. Tired of it all. Tired of sounding as if I am moaner. But these are real issues and people are mean and cruel and unkind in what can be described as "constructive" way - ie doing this to frustrate another so they either leave or give up. But how do give up sicknesses that cannot be seen with the naked eye? How do you give up secondary illnesses that are not considered "important" thus left untreated and may very well be the one that causes your demise?
If you can tell me how to get rid of it another way than having to face discrimination and prejudices, I will gladly take it.
Since they have now cancelled my appointment and heavens knows if and when I will get another: if you are taking Mepacrine how have you found it?