Thursday, February 25, 2010

The family

As I mentioned previously, at the time my symptoms started I was in a new relationship and my kids were 9 and 10 years old.

I'm not really sure what went through mys kids minds as I struggled with DM. I could tell they both became protective of me and my daughter wanted to help me a lot. I know it was scary and difficult for them at times but I tried to keep things as normal as possible.

Then there was the new relationship.My boyfriend moved in 2 months prior to the onset of my symptoms.It's hard to say what someone would do in the face of a daunting diagnosis. Some people would turn and run.

By about the 5th month we lived together, I was barely functioning. I left for work in the morning and as soon as I came home, I had to go straight to bed to rest from the work day. I had no energy to do anything.

Then there were the physical changes to deal with. My face was constantly red. I had other patchy red areas on my body over my joints.

My hair was falling out in clumps. Then there was the weight gain from the prednisone. I gained 80 pounds in less than a year from the steroids.

Why would anyone stay in a relatively new relationship with all that going on? Well he did. Not only did he  stay but he took on all the things I could not do.

He started doing all the laundry and the grocery shopping. He dropped the kids off at school and picked them up after school. He did all the cooking and the majority of the cleaning.

I am not really sure what I would have done without him.

Wednesday, February 24, 2010

My new reality

Up to this point I have mainly written about the mechanics of what took place with little on the impact this really had on me and my family.

I was a divorced mom of 2 and involved in a new relationship at the time this all started. My kids were 9 and 10 years old.

I was very active exercising an hour a day almost everyday. I had grown up very heavily involved in sports and I was fiercely independent.

I was very strong physically and mentally.


By the time I started seeing the rheumatologist, my whole world had changed.

I got up every morning and took a shower for work. After the shower, I had to lay down in bed and rest before I could get dressed. After getting dressed, I had to lay down and rest before leaving for work.

I could not tie my own shoes. I did not have the strength to hold my body in a bent over position to tie my shoes so my 10 year old daughter would tie them for me.

I could not hold a blow dryer above my head long enough to dry my hair, which was falling out by the handful.

We lived in a second floor apartment with no elevator. To walk up or down the stairs required a rest stop half way.

If I tripped, I could not catch myself and I would fall. When I fell, my arms were not strong enough to break my fall so I would land on my face. Once I fell, I could not stand up without help.

I could not stand from any low furniture. I had to carefully choose where I would sit to make sure I could get up again.

I could barely swallow. Eating was a constant choking risk and I found myself washing each bite down with water like you would a pill.

I could not shop at the grocery or do laundry myself. I couldn't carry anything over a few pounds.

I could barely turn the steering wheel on the car using both hands. I should NOT have been driving.

I never stopped working, I never used a handicapped parking permit and I would never allow myself to stop moving. I couldn't.

My biggest fear was sitting still. I was afraid if I stopped moving, I would never move again.

Am I the youngest person here?

Sitting in the waiting room on my first visit to the Rheumatologist at age 32, I noticed one thing right away. Everyone else sitting in the waiting room with me was at least twice my age. I didn't really have an issue with this because my body made me feel every bit as old as everyone else in the room.

During this visit I had to go through the entire story of my symptoms and everything else that I had gone through to lead me to his office.

The dr. immediately put me on 60mg of prednisone per day and a medicine I had never heard of called plaquenil. The prednisone is a corticosteroid used as an anti-inflammatory. The plaquenil is used more specifically for the rash.

Plaquenil is actually an antimalarial drug. While used for treating malaria, it was found that plaquenil would also reduce inflammation in patients who had auto-immune disorders. It is now a commonly used drug in the battle against inflammation.

The use of plaquenil does not come without risks. The dr. informed me I would have to see an ophthalmologist every 6 months to make sure the drug had not caused any changes to my eyes.

I was also given a prescription for a calcium nasal mist because prednisone use can deplete calcium levels.

The dr. said that the I would need an additional test to confirm the diagnosis of DM. Although he was certain I had it, auto-immune disorders are tricky and can change from one to another. We needed a baseline so we would know where we started.

An appointment was scheduled with a surgeon for a muscle biopsy to confirm the diagnosis. I then had more blood drawn, scheduled an appointment for the next month and headed home.

This would be the monthly routine for the foreseeable future.

I had my muscle biopsy and my diagnosis was confirmed. 100% certain, dermatomyositis.