Rheumy Time...

Dear Diary,

Yesterday I had an appointment to see a Rheumatologist. It was my first time in seeing a Rheumy, so I was quite nervous and unsure of what to expect.

As soon as she called my name, she quickly introduced herself and shook my hand. In with her was two medical students which I didn’t mind being in the room with. I always think ‘if I let them in the room then there are one or more people who are aware of E.D.S’ which is my aim. J They seem friendly and interested in what I had to say.

After many questions and a good examination of my joints, which included bending them as far back as she could. She wants me to get my liver, kidneys, my heart, my bones and my thyroid checked out. So unfortunately I have to go and have my blood test done which I’m not looking forward to as my arm always ends up a mess afterwards. Though I’ll be having magic cream and I’ll tap regularly on the surface (a trick I learnt from Writington Hospital when they were inserting the Anaesthetic needle into my hand) and keep it warm to help them get blood out of me easier.  

My heart will be checked by an Ultrasound scan, I presume like they did do when I was younger. The Dr wants to see how it is because I had a heart murmur when I was a baby and with my spine being so severely curved.

The reason why she wants me to get my Thyroid checked out is to see if there’s any reason (under/over active) to why I’m so underweight. I’m not majorly underweight though. So she is also referring me back to see a Dietician. They have always told me to eat little and often. Several times they tried me on different weight gaining supplements, like Calshakes, Ensure+ and Calogen but they all filled me so I didn’t feel like eating which I was unhappy with. I just hope that together I and the Dietician can come up with a diet that I will feel happy with and that will help me.

I have Osteoporosis; I was diagnosed while I was still at school so the Rheumy Dr wants to see how they are doing.

 I am also being referred to see a Podiatrist to find out about having some support things to hold up my ankles in shoes. When you see my naked feet, you will see that I have flat feet where the muscle is supposed to support the ankle upright but they don’t. As a youngster, I used to have to wear Paedro boots (which came in all jazzy colours) but they felt hard on my feet.

She is getting in contact with Hydro therapist to see what is happening with the Hydro as it has been out of action all summer but she wants me to go to it permanently. Hydro therapy is a pool of hot water and it helps the muscles and joints. I get a lot of benefit out of it although you only get to have around fifteen minutes in it as it is very hot. You crinkle up like a prune within fifteen minutes!

Fortunately my leg was swollen so she had a look. Again it was squishy and throbbed a little. After a little prodding, she told me it is Peripheral Edema. I’ve noticed it swells up after every time I dangle my leg out of my bed from the knee downwards. This is common in older people, in a way; it is like I have the body of an eighty seven year old (when you pair it up with the Osteoporosis and Arthritis). L

We had a good conversation about Occupational Therapy. Luckily I have my new OT coming to see me next month. During this discussion, we were talking about what hand/finger splints could be good for me. I have been given the task of looking online at EDS support sites/groups to see what other people have that helps them. This was something I was going to ask the Rheumy Dr about so I was quite happy when this came up. Every time someone does my nails, they bend funnily and it hard to hold them as they are so bendy. Not only doing my nails, but holding pens and even typing are a bit of a task for me. For so long I have just put up with it but now it does hurt a little. Apparently there all different kinds of hand/finger splints out there and the Rheumy Dr seem optimistic in getting me what I need even if it isn’t in this country.

I have also discovered that I have yet another condition called Arthralgia. This is basically joint pain which I think is in my knee especially. My list just seems to get bigger and bigger!

One thing also that she is doing for me is trying to get hold of my medical records from all the hospitals especially Royal Manchester Children’s Hospital. As she said, she isn’t sure where all the old records will be kept now they R.M.C.H have moved from the Pendlebury site but she will do what she can. I would love it if she managed to get hold of the videos they made of me when I was a youngster that was filmed for training and research purposes. I’m curious to see what they did to me and said about me. I have a lot of memories at the R.M.C.H and Prof. Galasko who I saw from when I was just two weeks old to when I was seventeen. J

So as you can see Diary, I have had a lot to take in and think about. I’m very grateful that I have finally found a GP and a specialist Dr who have took a keen interest in me and my E.D.S after all this time since Prof. Galasko. It has made me wonder why no one else has bothered to check everything out especially about my weight concerning the Thyroid issue. I am glad to have met this Rheumy Dr and will be seeing her again in a few months after all these tests have been done.  

The pain in my shoulder is worsening now so now I will love you and leave you to be...