Life with a Myositis Disease

The laughter and tears that come with living with Polymyositis

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Location: fort worth, texas, United States

Thursday, December 29, 2005

Another Christmas gone by.....

Whew! It's over. One more Christmas spent running at top speed to meet the gift needs of the general public. I must say, the Texans have been MUCH nicer about out-of-stocks than any other group I've dealt with over the years. Let's hear it for the southern grace!

That grace made a difference for me. It was a tough season. My medications seem to have fallen asleep at the wheel and my CK levels are out of control again....over 4500. *sigh* I have a new neurologist, with whom my mother is less than impressed. I think Dr Solomon in Seattle ruined her for all other doctors. His 'do or die' attitude made an impression! Of course, so did the fact that his treatment was so successful. I did visit a wonderful internist today, and think Dr Mehta will make a fine PCP. He was kind enough to agree to do my cancer screening pap-smear AND renew my anti-depressant prescription to save me from having to get two MORE doctors. Plus, his nurse did a great job pulling blood. How sad is it that I now judge a clinic by how easily they pull my blood? But jeez, it's such a pain when they keep missing. Anyone who can get it on the first stick is a hero in my book!

My new crew is so terrific! I guess there really is a reason for everything, and it makes me wonder why I fought so hard to stay on at BN. This Borders crew didn't blink an eye when I started to show some signs mid-way into the season of my disease. Instead, they would just tap my shoulder when I started to limp heavily and 'order' me to oversee the cashwrap and leave the floor-running to them. Wow! What a group! And what a difference it makes to work for a company that doesn't care if you appear competent, just that you are competent.

We had fun about a week ago. I was driving to work when this little puppy came darting out into heavy traffic. I immediately pulled onto the median and jumped out to try and grab him. Thankfully, the Texans were kind enough to stop for me....or perhaps it was just to watch the crazy lady stagger about flapping her arms..... In any event, I managed to call the little guy over to me long enough to grab him by the scruff, only to discover I couldn't lift him from a crouching position and had to hurl him into the car. The poor fellow sulked all the way to the store. Once there, he spent my entire shift behind the cashwrap sleeping in between play-time with various staffers. He was quite a hit. I reported him to the local shelter the next day, and his family came to get him. Hopefully, they'll keep a closer eye on him in the future!

Here's hoping everyone had a wonderful Christmas, Channukah, etc and that 2006 greets you with happiness and success!

Saturday, December 03, 2005

What a difference a year makes.....

Wow! It's been a year since my 'adventure' began, and looking back at everything I can't help but feel very lucky.

*All of those wonderful 'cancer screenings' are done, and all came back clear.

*My strength is back at around 80% (pretty much what I was told I would recover).

*While I still tire if I work too many days in a row (like eight!! Hope that's not necessary for awhile), my stamina is much, much better.

*I am still looking forward to the day of reducing medications, but my body is saying that that time is not yet here. *sigh* While my face is no longer reminiscient of the moon, I am still waiting for the day that I look like 'me' again!

*All of those aids I required 8 months ago now sit in my garage....and, God and my neurologist willing, they will STAY there!

*My condition is controllable, and not degenerative. If you must have a 'condition' (and far too many of us do) it might as well be one that is a pain, but not life-threatening.

*My brother has a new, exciting job.

*My other brother is having a ball with his new job.

*My father has a new, potentially fulfilling role at work.

*I am loving my new job, being back with my old company. They could care less that I have a disease. I can do the job, and that's all they care about! Wow - what a concept!

*I get to see my parents on a more regular basis (I am campaigning hard to have them relocate to DFW).

This is definitely holiday season worth being thankful for. There are some sad moments....I had to put my old friend Heidi down the day before Thanksgiving. I thought I wanted to be there, but she refused to lay down for the shot and when it took effect she just dropped. I was crushed - all I could think was 'I just killed my dog'. While my mind knows it was time, my heart is a little tougher to convince. I have a great friend who is also a dog-lover who cared enough to spend 1 1/2 hours on the phone remembering Heidi's quirky personality and sharing the laughter and tears that come with the memories.

I still have a terror of a retriever, who loves all people and hates anything with fur and a pushy dobie who has a recently revealed distaste for lively children. Teddy is currently sprawled belly up at the foot of the bed, while Tasha is curled up half on top of me forcing me to type around her head. They help ease a bit of that pain in saying good-bye to an old friend. My mother worried that I would try to get another dog to replace fear there. I love dogs, remember? Teddy would kill any I brought to the house. For the sake of all canines I will control my urges to fill the ache with new furry friends ;-).

Friends come in all shapes and sizes....but the furry ones are still the best of all!