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I'm so tired of having two "rare" diseases...

Tuesday, January 15, 2008
So, I've gained over 20 pounds since the whole Addison's diagnosis. Now, I realize that that may not seem like a bad thing, but it is. I lost over 70 pounds from last fall until this last May, not knowing what was wrong with me. Then, we got things leveled out and I gained a little bit and was right where I should have been, for the first time in over 40 years. Now, it was not the way to lose weight, but I was thrilled! People were calling my "tiny," I was buying all new clothes and everything looked great! I was feeling on top of the world about my body size. Then, I started eating the way I did that got me almost 70 pounds too heavy. Now, I'm about 20 pounds more than I should be. Twenty pounds may not seem like much, but it is a lot when it comes to pulmonary hypertension. I really need to get this weight off. Plus, there's not a whole lot of exercising that I can do. What I mean is, that the aerobic, fat-burning target heart rate thing isn't a good idea for me and many others with ph. So, I've got to focus on eating better.
My sister, who is gorgeous, lost weight recently through Weight Watchers. So, right before Christmas, I decided to join, online. I've religiously weighed in every week and logged in my weight on the website. At first I would get these little smiley faces and comments like "I'm glad you weighed in!" Then, I started getting these neutral faces with comments like, "It's hard to get started with the weight loss routine." Now, I'm getting these freaky-looking faces that are saying, "Hey, Fatty-Fatty-Bo-Batty!! Put away the ice cream!" (Actually, the faces aren't saying that, that's just my interpretation.)
So, I decided I should probably start going to meetings and try to take this a little more seriously. I went to my first meeting today. There were three "newbies." We stayed after the meeting to get the info to get started. The leader was just winding things up when she said to the newbie in the middle, "You're going to want to be careful with your points since you don't have very much weight to lose." Then she looked left and looked right and said, "Oh, and you also." OH! CRAP! That was painful!!!!
The big discussion though was when I weighed in. I asked if I could weigh in at home because I have all of this hardware (infusion pump, ice packs, fanny pack) on. One lady said, "No. But you can weigh all of the hardware and let us know how much it weighs so we can subtract it from your weekly weight. (At which point I decided that my "pack-o-goods" had to weigh at least 35 pounds) But, the leader-lady said "No. We will just weigh you with your pack on. You'll still be losing weight, which is the important thing." I don't think I'm going to get along with this leader-lady very well.
The leader-lady also told us that we were starting our diet today and that she did not want us going home with the "last supper" mentality. Well, I listened to her and I didn't go home! I went to Dairy Queen and got a peanut butter Blizzard. So, at least I listened to part of what she said!

Wish me luck. I'm going to need it.
Thanks for reading.

Annette
(aka: Fatty-Fatty-Bo-Batty with Blizzard stains on my shirt)

6 comments to I'm so tired of having two "rare" diseases...:

Di said...

I missed you last night at PEO but it sounded like you needed to rest and recover a bit more. Janie did make a divine applecake that I am sure had not points at all! Hope you are feeling better today.
You make me laugh. hugs, di

Jen said...

Annette,
Hey I am sure those Blizzards have zero points...LOL But they sure make you feel better. Right??
Take care Sweetie!!
Hugs,
Jen

Kathy said...

Let me ask you a question...when you lost 70 pounds, did you make any adjustments in your flolan? Thanks, Kathy

Sorry you are feeling bad.

Annette said...

Hello Kathy! The weight loss was slow and we were all assuming that my worsening condition was due to progression of the PH. In fact, we even started the inquiry process to see about getting listed for transplant. Now, looking back it's obvious that even though I was developing Addison's, my PH was progressing and my body was basically adjusting the Flolan dose as my weight decreased but the Flolan dosage stayed the same. Now that we're treating the Addisons my PH has settled down to where the topic of getting listed for transplant is not even discussed. I hope this answer makes sense. :)

Kristi said...

Annette,
You'll get the hang of it. Goodluck. I gained pounds after having my IV Lasix. Go figure.
Kristi

Donna said...

I'm glad you're feeling better but we missed you Monday night. It was a very full house, so just as well you stayed away. Way to go with Weight Watchers! Terry started 2 weeks ago and is doing well so hope he keeps going. It's not easy and I'm trying to help him with my cooking. If you need a buddy to talk to, give him a call.
Donna