Thursday, April 26, 2007

Sjogren's Syndrome

That is pronounced Show grins but I must say I don't have many grins to show this afternoon. Afternoons are usually the worst. I start the day positively and with lots of energy - well the most energy I have all day - but by 3. 30 I'm very tired. The rheumatologist says that is Sjogren's. Not many people know of it but it is quite common as far as auto immune diseases go. Trouble is most people do not get an easy diagnosis until after they have it for quite a while - 7 years it took me. Why? Well with me it was because the symptoms most doctors associate with Sjogren's were not my worst symptoms. Yes I had dry eyes, Yes I had a dry mouth. Yes I had more dental cavities. Yes I had dry skin. I did not go along giving these sypmtoms as they seemed minor to me compared to the muscle aches and the burning tingling in my hands, arms, feet and calves. But dryness is the main sign that doctors take note of to head them in the right direction. The version of SS I have comes with a neat little set of MS like symptoms just for fun. (Please note the sarcasim) If you want to know more about SS go to
This is not my disease - it does not belong to me - I'm not my disease
The rantings edited from what is going on inside my head about what is going on inside my body at any particular time.

Wednesday, April 25, 2007

Adie tonic pupil

I am not my disease.
I have adie tonic pupil. It is just another annoying symptom. No one tells me why I have it. They just make a note of it. What it means is that in the dark I cannot see properly out of one eye. It is not life threatening it is just annoying. I did not always have it - it arrived about 2 years ago - before I was diagnosed with SS. It sent my opthalmologist into a spin - what with that and the eye pain. He ordered an MRI of the brain straight away.
This is just a reminder to myself from eMedicine Anisocoria "The combination of an idiopathic tonic pupil with decreased deep tendon reflexes and/or orthostatic hypotension is termed Holmes-Adie syndrome. The symptoms of a tonic pupil tend to be self-limited. Aide pupil is believed to be idiopathic or viral in etiology.
Other causes of a tonic pupil include neurosyphilis, diabetes, herpes zoster, giant cell arteritis, and alcoholism." from Author: Richard Gray, MD, Assistant Professor of Clinical Emergency Medicine, Director of Undergraduate Education, Department of Emergency Medicine, University of Minnesota Medical School, Hennepin County Medical Center

Tuesday, April 24, 2007


I have an underactive thyroid.
It is called Hashimoto's thyroiditis (also called autoimmune thyroiditis and chronic lymphocytic thyroiditis). It is a chronic inflammation of the thyroid which is a condition of the endocrine system. That's why you visit an endocrinologist for thyroid concerns.

It means that the thyroid is attacking itself and making itself slow down.
I take 2 tiny pills every day and I have for many years. It is no big deal, except for when I travel as 1 of the tablets has to stay cool. One tablet is replacement thyroid hormone T2, the most commonly taken drug for the thyroid, and the other is T3 - tertroxine. This is taken as my thyroid needs extra help to absorb the T2. The thyroid causes many symptoms which can be confused with other diseases but it is suppoesedly easy to diagnose as it shows up in a simple blood test.

Jig saw puzzle

Things are not absolutely clear - as a matter of fact I feel like it is a large jig saw puzzle.
I know I have a thyroid condition. The endocrinologist said all my new symptoms were not caused by my thyroid - that my thyroid was being treated with the medication - T3 and T4. That sent my G.P. and me on a search for what was the cause of all these aches and pains and muscles that would not relax. (Just to name a few symptoms)

Many times I have heard that people have taken many years before getting a diagnosis. Any way all the pieces of the puzzle are not in place yet - that is how I feel. It is very frustrating to spend so long doing the jigsaw and only to find a few small pieces are missing. Do you know that feeling? Are you a completist? The choice is , I suppose , 1. to let go and walk away or 2. to search very carefully and methodically for the missing pieces.

Friday, April 20, 2007

I'm not my disease

This is not my disease - it does not belong to me - I'm not my disease

The rantings edited from what is going on inside my head about what is going on inside my body at any particular time.

You see, you cannot see.
You cannot see what is going on inside my head. You cannot see what is going on inside my body. I see this as a plus - all good.
If you could see what was going on inside my head - the verbal diarrhea - oh it would be very, very bad.
If you could see what was going on inside my body:
1. it would appear grotesque, a major battle ground, cell against cell, body attacking it's own body - a very frustrating, confused battle where no one wins (or something like that)
2. you would feel sorry for me and I don't want your pity
This way at least if you meet me in the street you will not know. I can pretend, keep up appearances. You see I am not my disease. If you know me you may be one of those who sometimes say "Hi, your looking good".
I'm not my disease