Neuromuscular In memory of Rose Marie.


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Old 09-25-2006, 05:15 AM #1
mamafigure mamafigure is offline
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Default Weekly check-in Sept. 25th

So how is life treating you this week?

I am just starting a new quilt, a baby quilt for a fellow librarian. She is adopting a little girl from China, so I am using a focus fabric called, China Doll.
I need to hurry and get it done because I want to make a wallhanging quilt for my grandmother using 30 repro fabric that is appliqued into 12 miniature aprons that you see through a "window" effect. I haven't tried appliqueing yet, so it should be fun.

It's your turn...tell what is happening with you!

mama
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Old 09-25-2006, 06:10 AM #2
blmave86 blmave86 is offline
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Mostly school. Morale there is at an all time low. I am afraid to say why here - you never know who is out there reading.

The church choir is finally advertising for an organist - I have been the temporary replacement for a year now and would be happier back in the choir. There is less stress and we all need to reduce stress where we can.

I can't believe Jen is in grade 12. She plans to go away to University next September. Of course, from here, any University is "away". I don't know what I will do without her. Throwing myself into my work is not an option. Suggestions appreciated.

Shirley
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Old 09-25-2006, 06:26 AM #3
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My wee one, Devynne is beggining Daisy scouts friday night. Luren and I are suckered into volunteering to help out with the troop. I'm sure with all of my free time in the world, it should be a smashing jolly good time!

I've decided to take up a hbby all my own. Stained glass. I committed to calling around this week and not stopping until I am sighned, sealed, and delvered into a class for begginers. ried of doing for others all the time. Mamma nbeeds to do something for herself!

Tis all for the moment. Shirley...is Jen REALLY in the 12th year already~ Say it "aint" so.

Mamma~ I've always admiored anyone who could quilt. I;d be the one who sewed my fingers together.
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~Alicia~who feels that four kids with a mitochondrial disease is like patching the Titanic with a bandaid at times, but I say.."SHUT UP, Sit Down and ROW"...
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Old 09-25-2006, 06:54 AM #4
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Shirl, I will call you tonight.

KT - I ws the only girls in our family that was not a good seamstress - and was the brunt of many jokes. After Michael died, I picked up a pattern and putting something together that was tactile somehow felt good. My first effort was not very good - but it made me feel better. I have been quilting fairly steadily for the last few years - but have taught myself. If I can do it, anyone can. Right now I am teaching strip quilting. I could tell you how in email. It is really simple.

Take care and have a great week.
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Old 09-25-2006, 08:03 AM #5
Sandy Lynn Sandy Lynn is offline
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Same old, same old here..... I still have not finihed with my gardens and I don't want to waste produce. I will have to call people to come and get what they want. I am still milking my goats but I plan to quit by thanksgiving. I think I have enough saved for winter anyway. So much to do before the dreaded winter socks us in....
Hockey has started so my nights are full.
Shirley, I feel so guilty.... and a little jealous.... Spencer started college this fall and I am not sad. I am relieved..... It is so much more peaceful without him here fighting with his younger brothers and sister.
mama, I also admire you. I wish I had a talent for quilting etc. My mom can do anything but I guess she didn't pass that gene onto me.....
Have a good one......Sandy
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Old 09-26-2006, 04:36 AM #6
lexiathedragongirl lexiathedragongirl is offline
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Smile

Did some gardening yesterday, planted two kangaroo's paw in my revived front garden bed, which finished it off quite nicely Went for a walk with my daughter and the dog this afternoon and had a talk to the cows up the back - think one of them may be in calf and ready to drop, either that or she's been eating waaay too much grass

Had a horror weekend with 35 degrees C and 100km/hr winds - as a result 50 fires around the state, 2 dead and 7 homes lost. And its only September Its not going to be a good summer. Have to complete my basic training soon.

Off to the accountant tomorrow to talk tax then spend the day with my man; look forward to days like that as sometimes it can be like "ships in the night" with shift work.

Waiting on results for my U/S update. That's about it.

k
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Old 09-26-2006, 10:28 PM #7
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The poor kangaroos, how did you get their paws? Seriously, what plant is that?

gp gave me antianxiety pills yesterday. I have never taken anything like that. I took 1/2 around 12:30 am fell asleep around 1:30 and woke at 7:30 and drowsed a bit until 8:30. So the sleep time was better, but I could hardly stand on my feet and I felt druggy until early afternoon. I'm not anxious most nights that I am home by myself (stay awake until can't keep my eyes open and then go to bed) - so this doesn't help daytime at all. Will try to stay on it for a few more nights in order to catch up on sleep, but after than??? I hate meds

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Old 09-27-2006, 05:37 PM #8
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I used to post here sometimes on the old forum. I was in the hospital when the forums crashed, and when I got home I wanted to come on and vent about what happened during that hospital stay, but the boards were down. And they stayed down.

I was just in the hospital again last week and am having a hard time getting back to normal.

I have a metabolic myopathy that they (metabolic doc, neuromuscular doc) think is mitochondrial. I get recurrent attacks of rhabdomyolysis, and also a lot of smaller attacks in between the big ones. I also have metabolic acidosis (type 2 renal tubular acidosis) that they were blaming on Topamax, but I stopped Topamax 2 months ago and my bicarb is still quite low (17-18), so it is my body's fault and not the Topamax. I get a lot of problems with pain, mood, nausea, and fatigue in the days/weeks following an episode of rhabdo, and so right now I am trying to get the docs to deal with those problems, too, rather than just the acute stuff when I am in the hospital.

I am supposed to go to Atlanta and see Dr Shoffner to get a second muscle biopsy. My first one was a frozen specimen, and they didn't really send any tissue for the mitochondrial tests at the time, either. They only sent it for light & electron microscopy and then a panel of several enzyme tests to look for some of the more common causes of rhabdo (CPT II, glycogen disorders). Then we were out of tissue, and it wasn't an ideal specimen to do the mito testing on, anyhow. So now I have to get a new biopsy with a fresh specimen and they will send it for mito testing, etc. However, I have an HMO and am in Wisconsin... and so we are trying to get the HMO to approve going to Atlanta for this test. There are only a couple of places in the country that do it.

Not much to say about what's happening this week. I am a grad student and am trying to get caught up from all of the stuff I missed while I was out last week. I basically go to school/work, then come home and crash. I really don't have the stamina to even be going to classes right now, but I am forcing myself to do it anyway so that I don't get farther behind. I am wondering, though, if it wouldn't be smarter to take a medical leave this semester. I don't want to take yet ANOTHER medical leave, though... At least I have a good disability insurance policy that I bought into before I got sick.

I am just sick of getting sick so damned often. I am frustrated with my body and am trying to just take it one day at a time and give myself the rest, hydration, and nutrition I need to climb out of this current episode of metabolic fog. For now I am going to keep struggling along with school and work, and try to let my body heal.
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