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

Tuesday, July 26, 2005


Life continues to roll swiftly - my house sold the first week it was on the market. We actually had a bidding war! The inspection is tomorrow, and even though I know the house is in good shape, a part of me will be nervous until it's over. I am really pleased with the new owners, though. The house was almost bought by someone who wanted it for a rental - my heart cringed at the thought after all the work I put into the yard and house. This family has two boys (one has Downs) with one on the way. They were so excited about buying their first house! The mother started to cry when I gave her a 4 page outline on the maintenance of the house. I remembered how stressful it was when I was a new home-owner and completely at loss as to what needed to be done when.

I am just glad it is over! Showing the house was nuts - there were over 20 showings in 4 days!! At one point, I was in for my IVIg treatment and was getting calls from realtors asking to show the house. One got frustrated when I told him he would have to wait until after 4pm so I could go home and put the dogs out. He kept insisting that it would "only take a few minutes", but backed off finally when I pointed out that I wasn't sure how to drive with an IV pole in tow and that my nurse would probably object to me finding out! Another kept pointing out that the listing indicated the dogs were friendly. I responded that they were - when I was around. I pointed out that I hadn't had the opportunity to see what they would do if strangers walked in, and as one was a Doberman I didn't think he wanted his clients to be the test subjects. ;-) He reluctantly agreed....

I am going to be working a week past when I had planned to make my last day at work...I just couldn't leave that new manager and the team hanging. Besides, I have been having a blast training a few of the newer managers. Two of them blew me away yesterday when each (separately) asked if I was aware that the company was probably trying to get rid of me by sending me to that store. The assistant manager used to be an employment attorney, and she outlined what she thought they were trying to do (sending me to a store that would be much more physically demanding) and suggested I seek an attorney for advice. She actually said she was angry when she heard I was being moved to her store since she didn't want to be a part ("even tangentially") to me being forced out due to a health condition. I was shocked, since I certainly hadn't said anything to anyone. It was heartwarming to hear them get so indignant on my behalf...yet another step towards rebuilding my confidence! I wonder if my boss is aware of how many people came to that conclusion and how much it has shaken their confidence in both her and the my mother says, what goes around comes around! I am sticking with my original approach of just not commenting, but I must admit to being secretly pleased that others recognize what was going on. It was such a blow to think that people would assume that it was my performance.

I am flying to Texas in a few days to house-hunt, and I have already sent marching orders to the realtor and my Mom. Thank God for my Mom! I'm sure the realtor thinks I am nuts since my top two priorities are (in this order) a fenced, treed yard for the dogs and room for my books. LOL! Mom and I will be leaving to drive to Texas from Seattle mid-month. I am a little worried about the drive, the heat and the dogs. Heidi is so brother (ever the optimist) has already asked what we would do if she dies on the way. His concern was that we would have to leave her on the side of the road. Mom assured him that we would find a nearby town and a vet to take her.

I am continuing to wean from the prednisone, and bought extra vials of the Methotrexate. I am down to 12mg/day of prednisone and will ask my rheumy at my next visit what the plans should be for pausing the weaning process during my move. I am hoping he will say it isn't necessary....

I will update on the house hunting progress - my hope is that the sellers will agree to allow me to move in before closing, though this might not be necessary as my loan officer says I can close as soon as the Seattle house closes. I just want to avoid staying in a hotel with three large dogs....and I think the hotels would agree that it isn't a good idea! :-) Mom and Dad don't know this yet, but I was thinking I could stay with them until the house closing and move-in date....poor Dad. It will truly be a test of his love to be invaded by three large, shedding dogs! Not to mention that Mom will have to help me walk them in order to protect their show-case of a yard. Like I've said before - having kids is a lot of work!

Thursday, July 21, 2005

Last IVIg??

I am getting ready to go in for my (hopefully) last IVIg treatment. Everything has been going so well that I am truly hoping I am one of those 1/3 with Polymyositis that is able to go into complete remission. From the sounds of some of the statistics that I've seen, a general statement might go along the lines of 1/3 able to achieve remission, 1/3 have control over the disease through medication and occasional flares, and 1/3 have to continually wrestle with this disease. I see so many of my friends at the TMA website that fall into that last 1/3, not to mention those who have DM and thoughts are with them. Their bravery and hopeful approach to life is truly inspiring (especially you, Jack! Thanks for the recipe - I'll have to try it and see if I can do it without destroying it!).

On a rather comical note, my house here in Seattle went onto the market on two days we had 3 offers!! My realtor is coming to my rheumy's office to bring me the paperwork. I can't wait to see her reaction when she comes into the infusion room and is faced with rows of people in Barca Loungers with sleeves rolled up, attached to IV poles! LOL!

I am beginning to be cautiously excited over my move to Texas....I still have some doubts as
to my ability to deal with the heat. But WOW - getting twice the house for half the price is worth some gleeful anticipation. Plus, it feels so good to feel valued again. It had gotten so stressful and ego-damaging with my employers, and my new boss is so excited to get me that I'm beginning to lose that beaten-dog feeling.

Of course, it helps that the recent statistics that were released shows my store at the top of the list. AND they have ME training a new manager instead of the trainer who has had her for three months without providing her with the training she needs. She asked my boss if there was any way to get me to stay for a month since she is getting so much more information....a small, petty part of me hopes that my boss will soon regret 'disposing' of me because of the thought that my illness could impact my performance. Since it clearly hasn't, I hope at least she learns not to leap to conclusions when someone becomes ill.

Well - I'm off! I hope everyone is doing well!

Friday, July 15, 2005

Here I go!

Well, I was fortunate enough to get an offer for a job in the Ft Worth area!

I don't know whether I should be scared or excited....there is so much to do in a very short time frame. Plus, tonight is - da-dum!!! HARRY POTTER! We have 3 news crews filming live, over 3,000 people expected. Gulp! I hope I come out of it in one piece.

I am still weaning off the prednisone, which is another worry. I have heard from several sources to stop weaning if you are due for some major life stressors. I just want to be off the prednisone, but don't want to risk throwing myself into another flare of the Polymyositis. I am also hoping to find a rheumy I like and who can continue to provide me with the injectable methotrexate....there is currently a nation-wide shortage. Jeez! I just want my old face back - no more swelling, no more acne. I will never again bemoan the occasional pimple! There are so many side-effects to prednisone. If anyone reading this is taking prednisone, try reading Coping with Prednisone - lots of great information.

My mother is being her usual self as an invaluable resource. She is an old hand at house-hunting and we already have plans to have her go up a scope out possibilities early so that I can fly down and choose among those she has previewed. I have already forewarned her that I will need her to house/dog-sit when I am sent off for training. LOL - she may yet live to regret having me so 'close', if you can consider 9 hours close.

I am really, really excited to live closer to my parents, but wish they didn't live in such a hot state! I am seriously considering having the dogs shaved before I head down. What will be fun is buying more house for half of what my house is in Seattle! I can't believe the difference - even though my salary is going down I will still be improving my standard of living....providing you don't think about the heat index.

Now, how do I beg, borrow and steal the labor needed to move my 6,000+ books. Any volunteers? :-)

Monday, July 04, 2005

Happy 4th of July!!

I would like to thank all of the military men and women as well as their families for the sacrifices they make on a daily basis to ensure our safety.

You are in my thoughts, and I wish peace and safety for you all.

Friday, July 01, 2005


I've been on vacation this week. I don't often take vacation, and this is the first time I have ever taken vacation without a reason.

I need to do this more often.

My rheumy told me that I could resume exercising (it is not recommended during the disease onset as it can speed up muscle atrophy)....I didn't have the heart to tell him I wasn't exercising BEFORE my disease onset! ;-) I decided that resuming former activities would do, since these activities seemed to keep me in fine shape prior to my Polymyositis diagnosis. He also told me I could continue to reduce my prednisone dosage. Yippee! I wonder how long it will take to lose the moon face and acne? *sigh* I can't wait to look like 'myself' again!

I had another visit to the psychiatrist to check on my response to the anti-depressant medication....he was just as vocal as he was on the first visit, and I found myself weirdly hypnotised by his tongue which kept popping out like a gopher with ADD. I'm still not entirely sure which of us is in more need of medication.....

So - this week has been a combination of frittering my time away surfing the web, doctors' appointments and completing a lot of the home improvements that had been interrupted. I am trying to make sure that the house is in good condition in case I actually get a job offer that takes me to Texas and I need to place it on the market. By the way - thanks a LOT for those encouraging comments on Texas weather! I can feel my hair curling already.....

I know, I know - boooring post! I can't help it! Nothing interesting happened this week in my little, little world but my mother keeps asking when I am going to post again!

This one's for you Mom!