I am still in the waiting room...
I have now been here for half an hour. I forgot my book which is extremely frustrating as I am now bored out of my brains. I do enjoy the people watching though! One gentleman has run into someone he used to work with years ago, it's nice to see an old connection between two people come to life again. It makes everything seem a little more positive....bodies can fail but connections are always real.
The chairs are seriously uncomfortable too! For a rheumatology clinic, where we all suffer from arthritic conditions, they really should reconsider their furnishings! By the time my name finally gets called my bottom is so numb I have to giggle - a nervous giggle. Big deep breath...here we go!
In the office
Today I am seeing the rhuematology nurse. Here is a brief breakdown. The nurses are there to make sure that you are doing well on your current medications, speak to you about how you feel in general and then give you the all clear. However this was not in store for me today! Today she took one look at me and told me I look really unwell. Fantastic compliment right there and I knew exactly what was going to come next....equally at times of nerves why do I keep fiddling with my hands?
I talked her through the past three months. I have had 3 flare ups, I am back on the steroids because of the pain and I have not been sleeping at all really. She looks concerned and is very genuine in her kind responses. She asks me to lie on the bed, which is absolutely freezing, so she can check my joints and low and behold my ankle is very badly swollen. Along with this, my fingers and wrists are also swollen...which lead her to checking my joint mobility....for which the pain is excruciating....I can feel the bones grinding together and I have to drift away to somewhere where pain can't reach! Maybe a lake where I can swim, some good music in the background and a strong hand to hold!
It is at moment like these that I realize the extent of how poorly I am. It is ok when you can't see or feel the damage, but now I can feel it and that is terrifying. That means that my body really has decided to try it's best to break me....it wont win...but it will try. It is then that she says the dreaded...."I need to get the senior consultant to look you over".
Now, me being me, I find the humor in such things...my response was to simply say..."they need to buy me dinner first"....well you have to laugh don't you!
The Senior Consultant has a stern face....no offense meant.
I have to wait for the consultant to finish with another patient...and my wait is on a cold bed, in a flimsy gown and I am so cold I start to shiver! I read all the posters on the walls...they are dull and I really don't care what they say I just want to go home now. I think we all get to the point during hospital days, when the fear dissipates and turns to a longing to be at home, safe and tucked up in bed! I am so cold - this is a hospital, I thought they always have to be warm!
Finally the door opens, I shift myself to sit up as I don't want to meet a new doctor lying on my back...not my finest look. She has a stern face, that is the first thing I notice. I mean her no offense but a smile goes a long way. However she does shake my hand and ask me about what has been happening. Then comes something that I have not been told before....
"You have a very complex case...you have multiple connective tissue disease...all working together to create one monster force"............well that is just perfect, wish I could be content just having one....again humor as a defence mechanism! She then starts to talk through the wide variety of "TOXIC" drugs they can offer me...I fixate on the word as toxic is something you don't want to hear. So my options are as follows......
- Continue as I am and suffer the pain/flare ups.
- Start one toxic drug (I wont name them here as it's personal) this one helps with pain
- Start another kind for swelling
- Take the two together
This opens up a can of worms...I have paper work to sign, more medical questions to go through and yet more tests. I cannot have children on these tablets...OK that's fine...I cannot drink on these tablets...OK I can cope with that.....I have to be aware that I will be so immuno compromised I have to watch out for pneumonia........ OK I can deal with it. I am given 5 booklets to read when I am at home, two letters for my GP and signed up for the pneumococal vaccine and the flu vaccine.
And that is the end of the day! That is all....I go in...I get prodded....I get new drugs....I come home. It is here that the mental exhaustion hits me like a brick. I will sleep soundly tonight.
