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

Monday, August 29, 2005

Blast from the past!

Wow! The wonders of technology!! An old friend of mine from high school and college tracked me down via my blog site....I got an email from her, and as I generally delete any emails I don't recognize I nearly deleted hers. I have been trying to track her down off and on over the years, but as she changed her name haven't been successful. I am looking forward to doing some catching up!

I have been slowly making my way down my 'to-do' list from my hotel room on my days off. I am a little frustrated with my doctor search. The MDA was able to give me a referral, but the soonest I can get in is mid-October! I really don't want to wait that long to assess my progress on the prednisone weaning, or to check my response to the Methatrexate (some nasty side-effect potential there!) I made an appointment, and asked to be called with any cancellations, but will continue to search for someone with an earlier appointment who is familiar with Polymyositis. The doctor affiliated with the MDA is a neurologist, and I hear they tend to take a slightly different approach than rheumatologists do....should be interesting!

The dogs are doing pretty well down at Mom and Dad's, though Teddy has shown a previously unknown talent for escaping confinement. Heidi has rediscovered her strength, which means she can be tough to corral and point in the right direction for her morning constitutional....oops!

Still surviving the heat!

Sunday, August 21, 2005

Battle of the Species

Well, we made it. Mom drove the majority of the way - what a marathon! The dogs had it the worst (although mom may challenge that due to the rather strong eau de dog we had going after three days in the car. Plus, there was the 'phantom farting'. Mom insisted one of the dogs was farting, but I never smelled it. Either I am now inured to the fragrance, or she is smelling farts where none exist). Heide (the 13 year old retriever mix) slept for about three days once we reached Corpus. Tasha (the dobie) is flustered by the change, and spends most of her time curled up on the bed, or pressing against the nearest human. Teddy (better known as the Terminator) is totally unphased. As long as he has his food, he's a happy camper.

The same canNOT be said for my parents' two birds. Teddy was told firmly the first day that the birds were off-limits. I should have known by the studious way he ignored them that he was simply biding his time until no one was watching. And it happened. Early in the morning on the third day, Mom and I had our backs turned when the commotion broke out. Teddy went for Tootsie - the African Grey parrot. This breed sells for about $1300 - not that the monetary value outweighs the emotional bond my folks have with this bird. I tore Teddy off the bird, my Mom picked Tootsie up off the floor, and my Dad came racing from the bathroom - complete with his half-shaved face. Mom and Dad locked themselves in the bathroom to comfort Tootsie and check her for injuries, while I ran Teddy out the back door. He now spends his time tethered to the banister whenever the Tootsie is out of her cage. Tootsie came out of it traumatized, but relatively unhurt. It took me hours to slow my heartbeat down. Here my parents are generously allowing their house to be invaded by three large dogs, and one has to use their beloved bird as a chew toy!

I am now staying in what will be my home for the next 4 weeks - a hotel off I-35 in Fort Worth. Have I mentioned the heat yet? A full 30 degrees hotter than Seattle. Have I lost my mind?? I have spent the last four days SOAKING WET. I never knew breasts could sweat. And the bugs! I am covered in mosquito bites. My folks wanted to know why I didn't wear long pants and sleeves....Somehow, they failed to tell me that not only would I have to become accustomed to 100 degree weather, but that I would have to do it in my winter-wear!

My first day at the new job is tomorrow, though, and I'm excited about that. I am a little overwhelmed by the next few weeks....I have to familiarize myself with a new city, new job, find new doctors, close on my new house, arrange for some minor changes (like replacing the sea-green carpeting and installing a dog-door)....yikes! When is my next vacation?

My prednisone weaning has been placed on hold until I can find a new rheumy who can monitor the progress. I had a very sobering conversation with my Seattle rheumy, who pointedly told me that I was not out of the woods yet, and that I would not come back from a flare nearly as well the second time. Sooo....I am reining in my natural impatience and taking the prednisone weaning very slowly since going too quickly will throw those with myositis diseases into relapses.

Do me a favor and send some cooling thoughts my way, willya?

Thursday, August 11, 2005

Pods from Outer Space

I swear those moving pods SHRINK! That is the only explanation for why four weren't sufficient. I had to have another one delivered, and am hoping that will be enough. Geez - when did I collect all this stuff?? And I accuse my uncle of being a pack rat....

Speaking of the pack rat - my family ROCKS! My poor uncle came down and spent the night to help me with the final moving preparations. As a former Naval man, no one can beat him in knowing how to pack and keep things moving along- with colorful and entertaining expletives! He worked like a dog, and directed those movers making sure every spare inch of pod space was used (and I still ran out of space??) I kept telling him to take it easy - his girlfriend strikes me as someone who would take swift action should someone cause harm to her man! LOL

I left at one point during the pod-packing to get lunch for everyone, and when I returned it was to three men with suspiciously innocent looking expressions on their faces. I began unpacking the fast-food, while looking about trying to see what could have caused this reaction, while they chattered away - you know, the way men only do when they want to distract you? My concern began to rise when I spotted my saws-all sitting on top of some boxes. For those of you who aren't familiar with them - this is a large tool that will cut through anything - wood, metal, etc. Uncle Mike began lecturing me sternly on the two items you never pack during a move - tools, and an extension cord. I responded that I hadn't packed the tools, and just what did you need an extension cord for? Everyone got very quiet, and the moving guys began inspecting their food intently.

I should explain that I have a very tall armoire made of solid wood that I was concerned might not fit in the pods - the delivery guy looked it over and assured me it would. Well, apparently it wouldn't. So my Uncle - being the 'get it done' kind of guy he is - decided to do some last minute the pod, and NOT the armoire, thank God! I'm just glad he waited to do it while I was gone so I can honestly say I didn't see what happened, should the moving company notice it later!

And then there's my mom, who arrived yesterday to make the drive with me to Texas (the trip has now been delayed a few days due to the additional pod). I picked her up from Seatac after an hour wait for her luggage - this is why I try to NEVER check luggage when coming into Seatac. I had called my sister-in-law the night before to ask her to put my mom up for a few days, since the trip was delayed and I refuse to have her join me in sleeping on the floor of an empty house with no fridge and three dogs. I am sleeping on an air mattress and Heidi (who hasn't been able to reach the bed for a few years now) was happy to join me and the other two dogs at night. All three are fairly uneasy with all the activity, so I wind up with a Tasha on one side, Teddy on the other and Heidi in her old spot near my head....I guess I'll have to get used to a face full of fluffy butt-fur in my face for a few nights!

As my Mom and I were leaving the airport, we had this exchange:

Mom: So, what did Uncle Mike have to say?
Me: Son of a BITCH! Shit, shit, SHIT!!
Mom (looking about frantically): What? What!
Me: That's what he had to say.
Mom: Who?!
Me: Uncle Mike!
Mom: Oh.

Then she starts to laugh as the exchange sunk in. Now, watching my mom laugh is enough to make the most sober individual giggle. Her face brightens in glee, her skin pinkens and the only noise she makes is small huffs of air. If you really tickle her funny-bone, tears will stream down her cheeks while the huffing noises come more frantically - almost squeaking. Every time I am able to make the tears come, I feel like I won a prize. I am the FUNNIEST person on earth at that moment.

I love to make my mom laugh, and she deserves every snicker, giggle, belly laugh she can get. The last time she went on a road trip with me I happened to bring the book Stupid Criminals which I read to her on the way, to her delight. This time I tried to bring audio books, but No! She wanted me to read to her. So I poured over the humor section and bought 5 more 'stupid' books - whatever she wants, she's gonna get for agreeing to make a 2500 mile trip in a small SUV in the summer heat with me, our luggage and THREE LARGE DOGS. Listening to music isn't an option as I object to her choices (Roger Whitaker and John Denver) and she objects to mine (Janis Joplin and Aerosmith singing the blues). What a combo! Maybe we could trade off....*snicker*

Our trip will be punctuated by regular calls from Dad. He and Mom talk multiple times a day when either one is travelling. Mom's family once commented that it seemed controlling to them - which left Mom bemused. They truly have a wonderful relationship, and enjoy each others' company immensely. I can only hope to find that kind of relationship. Dad is very excited to have me in Texas....I think it really bothered him to have me so far away when I was ill. He never saw me at my worst, and while he couldn't have done anything I'm sure it was tough knowing your child was fighting a disease while you couldn't even offer a hug. His hugs are worth gold!

Here's hoping for an uneventful trip, and to getting my long-overdue hug from Dad!!

Thursday, August 04, 2005

Found it!

Well, moving day is getting closer! My house passed inspection....if you consider having to put on a new roof 'passing'....I can't really complain, though, considering the buyers went $5K over asking and the new roof will only cost about $2K. Still, it hurts a bit to pay for a new roof I can't enjoy.

I flew down to Ft Worth on the 2nd, went to see the houses my realtor and mom vetted for me. Thank God for my mom!! Even the realtor was impressed with her - she said my mom took her job very seriously and was intent on finding the best house for me, and boy, did she! This house is terrific! Great yard for the dogs, already has hardwood floors in a few rooms, nearly twice the size of my current house and nearly half the cost! Texas sure does have some bright points! AND (the biggest selling point for me, after the yard) it has a BONUS room above the master bedroom where I can store most of my books!!!!! Yippeee! No more stacking them 2 and 4 deep on a shelf and having to dig to find the one I am looking for! I swear my addiction to books is as bad as an alcoholic's for their daily drink....

I was also really impressed with DFW. There are trees! I know, I sound like an idiot but I guess I expected an entire state of desert. The only downside is that the owners of the house I put the offer in for don't want to move until mid-September. This means mom and dad will be dog-sitting for a month. I guess if there was ever any doubt as to how much they loved me, seeing my mom exhaust herself looking for the perfect house then agreeing to bring three large dogs into their newly remodeled house proves it beyond a shadow! I can't wait to see what happens when their two large parrots meet my dogs! LOL! I bet the birds scare the pee out of the dogs the first time they screech!

I also got to see my new store. It is very pretty, and the staff seems like a happy crew. I can't wait to get down there and get things going! I am still a little nervous about the affects of the move with me weaning from the prednisone, but the bright side is that I am doing so much better. My mom kept staring at me, marveling every time I crouched, got up from a chair unassisted or even rolled over in bed. It almost seems like a bizarre dream to think of how sick I was just a couple of months ago..... Life sure is interesting!

The pods get delivered tomorrow, I have three more days of work then I pack, then mom and I will shove the dogs in the car and take off for Texas. Wish us luck! With that crew in tow, we will need it!