I had great difficulty coming up with a catchy title, I mean there is very little I can actually say that will give weight to the complex emotions you go through at a Lupus, or Rheumatology review - in fact a review of any illness you may be battling. They are tough. You will have armed yourself with a list of questions, prepared everything you need, you will be nervous, worried, anxious. All of this will come at once and until the review is over you wont be able to calm down. This was me at 10am this morning; a bag of nerves doesn't even come close......no wonder my blood pressure was on the high side when they took it. Would I get good news, bad news, what would the implications of this be?
And then this happens........
After an hour wait, which I don't blame the NHS for as it happens, I was called in to see yet another specialist who isn't my primary specialist. I haven't actually been assessed by my primary specialist since December. I sat down and immediately got my list of questions out of my handbag. I was ready to begin and the three most pressing things I needed to cover were my inflamed nail folds on my fingers that hurt so much typing is excruciating, my issues with swallowing and the strange red lumps that are appearing on my face.
The new doctor had not looked at my notes before I arrived so I waited patiently for him to skim read the notes from all my previous appointments. When he was ready I slowly went through my three concerns and asked for his professional opinion. I have written a lot on here about how to get the most from your appointments and I stick to that, the problem was this doctor seemed to have difficulty understanding what I was saying. He flippantly told me to drink more as it's a sign of the connective tissue disease that I don't produce enough saliva.....well I have tried this and it doesn't work...he would not listen to this and moved on.
He did not inspect my fingers at all, asking if I had a bad back and placing the finger swelling down to that. I have zero back pain, have not hurt my back and it is a common symptom in Lupus to have swollen nail folds....all I needed was for him to have looked at my nails. So he referred me to yet another physio for a back condition I don't even believe is there. By this point my finger nail beds had swollen up and I was trying to get his attention so that I could show him. The most annoying factor is that a two minute search of Google for nail fold inflammation will bring up Lupus.
Next the rash.....remembering this is rheumatology and a lot of connective tissue diseases produce rashes...I was told he doesn't deal with rashes and so would not help me with this. WHAT!!! Hang on a minute, who will help me then? My GP tells me to see my specialist...the specialist tells me he doesn't deal with connective tissue rashes......am I the only one who sees a problem here?
Finally and most upsettingly I was asked a question that quite frankly was rude. Exact words were "Have you always been this big".
Now firstly I would like to point out I am a size 10-12. I work out 4 times a week, walk around 4 miles daily, eat a healthy diet and I feel healthy - well as much as any of us can. Secondly......could you re phrase that????
A simple look through my notes would have brought to light all the the doctor needed to know about my lifestyle as I am very open and honest. I train regularly, I have a high muscle to fat ratio and I have lost 1.5 stone in the past 2 months. Don't get me wrong, I could lose a couple of pounds here or there, that is not in question and I agree that there are ways I can cut down on some things. Take the single sugar out of my tea for example, BUT REALLY, is this a great way to approach the subject of weight?
The other issue here is that our mental health is as important as our physical health. In fact I really don't believe you can have a good physical health without a happy life. Well this just isn't going to do that now is it!! Even if I had have had a weight problem, what is the purpose of bringing up a change of lifestyle in such a derogatory way?
After asking me about my weight, not listening to me when I told him the amount of exercise I do and the diet I eat...for which he was determined to believe I MUST just sit at home and eat all the time, I left. I was answerless again, no closer to getting the help that I need right now, he didn't even ask much about my medications....they were over looked just like everything I was saying and then I was called BIG that is not a complimentary word.
This was the final straw.
I have been uncomfortable with my hospital for a number of months. they did not want to acknowledge my last flare for which I had to get my GP involved to make sure I was seen. They have flippantly overlooked the impact this illness has had on my life, they refuse to acknowledge my questions on numerous occasions and I haven't seen my own specialist for months..........this does not make for a happy girl.
So I have made a big decision......to transfer hospitals. The reason this is a big decision is that I will almost have to start from scratch. They will do their baseline tests, they will go through my history again, I will be in limbo again.....but I do have to do something. If I stick with where I am I will keep having to take days off work for no reason whatsoever.....wasting my time, losing me money and upsetting me in the process.
So I shall be sharing with you my journey through being transferred. I don't know the process yet, but when I know we shall all know in the hope that no one else has to go through this illness feeling disbelieved, no worthy of care and well.....BIG!
