Still dragging a bit but the diet is working pretty well.
Lost 6 pounds over the last two weeks.
Just a place for me to keep notes for myself and my doctors because I can't seem to keep track of it all anymore.Lupus (and/or another/more autoimmune problems) IPF, clotting problems and more %*(&##)(@!@$(*^ than I want to deal with. Updated to be "Mixed Connective Tissue Disease" woohoo! (sarcasm galore!) How you can go from fine to a wreck in almost no time is a mystery that no one seems able to solve.
Thursday, January 24, 2013
Sunday, January 20, 2013
So I started a diet log
I downloaded a MyFitness log onto the iPad and have been religously keeping track of a 1200 calorie diet. Eating hree meals a day with snacks other than eating only after work.
It is not easy to eat 1200 "good" calories a day. I'd been eating about 950 to 1000 and not losing anything. I'd been told for ages I didn't eat enough but I guess everyone was correct because i'm down 5 pounds this week
Not the easiest of weeks otherwise. My breathing is not good.Lots of choaking in the morning if I sleep in bed or in the chair even with the Musinex.
INR still ok.
It is not easy to eat 1200 "good" calories a day. I'd been eating about 950 to 1000 and not losing anything. I'd been told for ages I didn't eat enough but I guess everyone was correct because i'm down 5 pounds this week
Not the easiest of weeks otherwise. My breathing is not good.Lots of choaking in the morning if I sleep in bed or in the chair even with the Musinex.
INR still ok.
Friday, January 11, 2013
Another mountain to climb w/no oxygen
Finally got a call from Martha on the transplant team and they won't see me because my BMI is too high. In other words I am too fat. BMI has to be under 30 and I'm at 45. I asked what weight that would be and she said about 160. She really seemed like she wanted to get off the phone as I asked more questions.
They have that I have Lupus. I explained that Marx says she hasn't diagnosed me with any specific auto immune disease although my markers are high for a bunch and that D'Avignon was who said I had Lupus before refusing to treat me anymore.
She was surprised I'm still working and active. said sorry she couldn't help me. I asked if they'd consider me if I lost the weight. I asked how the rest of my profile looked. We talked about my mess with D'Avignon, Marx's lack of diagnosis and my activity level.
She finally offered that I should call Methodist to get into their pulmonary rehab program. Called Marks for a referral.
She said they may be able to help with what I asked for ages ago; a way to exercise and keep my SAT rate up enough not to want to pass out.
Said to call her when I've lost 40 pounds and have 40 to go.
Going home to empty the cupboards of all food Chris doesn't eat. Eating light hasn't worked. Maybe a water, veggies, no dairy, no meat diet will work.
Guess the potato soup is going down the sink. It's just potatoes, onion and water but probably high in calories anyway.
Damn I am scared again.
They have that I have Lupus. I explained that Marx says she hasn't diagnosed me with any specific auto immune disease although my markers are high for a bunch and that D'Avignon was who said I had Lupus before refusing to treat me anymore.
She was surprised I'm still working and active. said sorry she couldn't help me. I asked if they'd consider me if I lost the weight. I asked how the rest of my profile looked. We talked about my mess with D'Avignon, Marx's lack of diagnosis and my activity level.
She finally offered that I should call Methodist to get into their pulmonary rehab program. Called Marks for a referral.
She said they may be able to help with what I asked for ages ago; a way to exercise and keep my SAT rate up enough not to want to pass out.
Said to call her when I've lost 40 pounds and have 40 to go.
Going home to empty the cupboards of all food Chris doesn't eat. Eating light hasn't worked. Maybe a water, veggies, no dairy, no meat diet will work.
Guess the potato soup is going down the sink. It's just potatoes, onion and water but probably high in calories anyway.
Damn I am scared again.
Saturday, January 5, 2013
Hyperventalating
The tea kettle above is one I've obcessed over for years. I actually dragged Chris to the Lennox Square Mall in Atlanta because it was the only place that I could see it south of NY.
Over the years I've looked at it at Neimans then Val got a little colonder from her mother-in-law in that pattern and it renewed my crazy obcessive want but I could never bring myself to spend $125 on somtthing so frivoulous.
A few days ago I made it my profile pic on BC. Covert commented on it and I told my obcession story.
Yesterday the Fed Ex girl came and I casually opened a box and almost fainted to find the tea kettle in front of me.
A BC friend, flossie771 Marcia Vaughn. said she was sending me a gift but I expected a wishlist book. I couldn't believe she saw my story and bought me my obcession. She said she felt compelled to buy it and she went with her feelings. She said SHE was blessed to be able to get it for me. I can't stop crying over her generosity.
I give to my friends on BC and try to do random good deeds like paying for the person behind me at McD;s or Starbucks in the mornings (gave my last $2 to a homeless guy on DeZavala just 1/2 an hour before receiving the kettle) but this makes my efforts seem feeble.
My week: Worked on the 31st until about 3 then came home and listened to the fireworks noise from abour 6pm to 2 am
1st we did almost nothing. B was supposed to come over but she was sick.
2nd Went into work at 9 then took the boys to Gymboree where Margo met us. Was using my oxygen and not feeling great and she suggested I see if I could see Marks. No antibiotic. Lungs the same as last week.
3rd Danny & Margo to Dallas until Sat. Picked up the guys at school then we had a good day. Chris stopped to check my antifreeze. he'd left the cap off. Hard night. Boys woke a few times.
4th Sonja and Richard came early at about noon and I met Chris at Sams then we went to Einsteins for a quick lunch before his next appt. Sold one today.
Saturday, December 29, 2012
Busy Day


Chris had two appts so he's gone all day. Sold a $13,000 job and is on the way to his 2nd appt. at 5:00 for flooring.
Woman came to pick up the Cusinart coffee maker I listed on Freecycle.og. No show on the mattress so I have to relist it.
Made stuffing and a pot of potato soup, in the new crockpot, along with some peach and raspberry filled filo for Brye who is really sick with the flu.
Watched some Supernanny & Storage Wars episodes while doing a few loads of wash and cleaning up the kitchen.
Breathing is not great today. Having to take lots of breaks even though I have the oxygen on.
Edit at 10:45 Chris sold his second job too. A $28,000 day! Woohoo! Windows and a French door on a front door appt. He came home with some great Alabama Sausage from the Conecuh Sausage Company, a cross and a box of Russel Strover.
Friday, December 28, 2012
Pulmonary Tests again yesterday
Over all most of my lung funtions are down between 14 and 18% since last tested in Sept.
I think the bronchitis last month pretty much did me in.
OLC is 51% Did 3 minutes of a 6 minute walking test w/oxygen and my SAT rate went down to 83. Oddette ordered me continous flow oxygen so hopefully I'll get the portable concentrator that Providacare keeps telling me they will get for me.
.
My new sewing/embroidery machine came in today! Can't wait to try it out tomorrow when I have some energy.
Got out of work at 4 and wanted to get Chris another birthday present but the people I ordered his CarGo desk from still haven't credited my checking account. Left a fairly nasty message again. The bank can't do anything to help. I should have used a charge card.
Put out the old Cusinart coffee maker for pick up. I listed it and the mattress on Freecycle. Chris swears no one will show up.
He is watching Bond movies yet again and I'm on here and playing Spider Solitare.
EDIT How could I not write about Christmas?
Worked until 4 on Christmas Eve. They gave me an Ipad Mini!!!! I was floored. Messed me up a bit though because I had Chris's Escort Radar Detector on hold at Best Buy. Didn't get my usual check so I had to borrow money from him to buy it.
Then the car desk I ordered isn't available until Feb AND they alreqdy took the funds for it so I'm totally broke and didn't get him another B.Day present.
Looked at a house on the 26th. Great layout but too worn. Stopped at Cupcake Coutour for a German Chocolate Birthday cupcake on the way home.
Chris, as usual bought me way too much for Christmas. A Kurig, two sets of pj's, a wonderful robe that is satin on the outside and soft furry on the inside.And the sewing machine.
I think the bronchitis last month pretty much did me in.
OLC is 51% Did 3 minutes of a 6 minute walking test w/oxygen and my SAT rate went down to 83. Oddette ordered me continous flow oxygen so hopefully I'll get the portable concentrator that Providacare keeps telling me they will get for me.
.
My new sewing/embroidery machine came in today! Can't wait to try it out tomorrow when I have some energy.
Got out of work at 4 and wanted to get Chris another birthday present but the people I ordered his CarGo desk from still haven't credited my checking account. Left a fairly nasty message again. The bank can't do anything to help. I should have used a charge card.
Put out the old Cusinart coffee maker for pick up. I listed it and the mattress on Freecycle. Chris swears no one will show up.
He is watching Bond movies yet again and I'm on here and playing Spider Solitare.

EDIT How could I not write about Christmas?
Worked until 4 on Christmas Eve. They gave me an Ipad Mini!!!! I was floored. Messed me up a bit though because I had Chris's Escort Radar Detector on hold at Best Buy. Didn't get my usual check so I had to borrow money from him to buy it.
Then the car desk I ordered isn't available until Feb AND they alreqdy took the funds for it so I'm totally broke and didn't get him another B.Day present.
Looked at a house on the 26th. Great layout but too worn. Stopped at Cupcake Coutour for a German Chocolate Birthday cupcake on the way home.
Chris, as usual bought me way too much for Christmas. A Kurig, two sets of pj's, a wonderful robe that is satin on the outside and soft furry on the inside.And the sewing machine.
Saturday, December 22, 2012
Alida Knobloch
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