Walking into a new and brighter life.

Walking into a new and brighter life.

The healthy me

The healthy me

Finding your way around

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This I know.................

This I know.................

Thursday, September 2, 2010

Spinning around and round

I didn't mention but on August 31st I re-joined Weight Watchers, Britt joined with me. I am taking it a step further than Weight Watchers recommends... so this is my disclaimer!! LOL

Britt suggested (being a young person who excercises on a daily basis and for the most part watches what she eats) that I take fiber pills. Not because of constipation or a medical reason, but to get that "filled up feeling". She told me which ones she uses. I plan to be on them longer than she so I am starting out at a lower dose than recommended on the bottle. The dose says to take 5 capsules every day. Well, I took 2 this morning, and will take 1 more tonight with dinner. I just want something to help me feel that bulk I have been giving myself all these months. So, I'll let you know if it is helping at all.
I am a little afraid to take ANYTHING that is not perscribed right now. I don't want to ruin any chances I may have or do any harm to myself.
I figure this is a no brain-er... food in... food out.
I am using Weight Watchers as a guide. Their points system helps me keep a low carb, high fiber, low calorie and fat diet. I am veering off the plan by not eating all my "allowable" points for each day. They want you to eat 3 meals a day, and yes... I know that is the ideal healthy thing to do. However, I have never been a eater in the morning or even lunch. Most of my life I have eaten early dinner or at 5 or 6, then snacked right before bed. That is what I am changing... that snacking... and if I snack it is now carrots, or apples, or the nonfat yogurt. That works for me. I drink water all day, but as soon as I have one meal then I want to snack ALL day. And, besides that... I need to lose a great deal of weight as healthily as I can in a short period of time. As soon as my heart medication the pulmonologist perscribed for me starts helping my pulse rate I can start walking again. That will also help with the muscle build up.

So, I am having a perplexing issue. As if my entire life lately isn't perplexing! LoL

I got this message (I won't say who it is from, just in case.. I wouldn't want him or her in trouble)
Now, if I were too need a transplant, (a non emergent one) in which I had time to research let me tell you what I would do. First, I would try any and all options first. Knowing what I do about lung transplants, I have to be honest that of all, they can be the hardest. The most uncomfortable post op, the most difficult, often times prone to infections. AND if at all possible find, and talk to a living lung transplant patient, ask them if they would do it again. It does mean, (among many other things) immunosuppressive medication that you MUST take for the rest of your life--and those medications are not without their own side effects. But, if that what it takes to live--then we do what we have to do.


It just left me afraid of the entire thing. I took his or her advice and am looking for a transplant patient to talk to. Hopefully someone who has already gone through the process can give me insight. The way he talks it would be better not to have it.
I asked my pulmonologist about the LVRS (lung volume reduction surgery) and he said that is something I can talk to them about at the transplant center.

I kinda feel like my pulmonologist is out of answers so it's onto the transplant center. However, I do know that this is effecting my heart and I have no air at all anymore. I now get breathless in the shower, getting dressed, anytime I move pretty much, and even sitting still at time I am taking deep breaths trying to get enough air in. All this and on O2 at 5 liters per minute. So, I am sure my pulmonologist is right. I am looking for reasons not to do this, when I know realistically it's the right thing.

I had Brittney read the email, and asked her what she thought. She said.. "Mom, you know all those things, you just don't want to consider them." What a smart daughter I have!

I tried to talk to Bill today and he just says "yeah, or we'll wait and see". Anything I want to discuss or feel like deserves an answer and he says yeah or we'll see. I told him I talk to total strangers online and have gotten more support and conversation from them. (I in no way think my online friends are "strangers", but you know what I mean) I had a visit the other day from one of Brittney's friends who is like a daughter to me. Her parents live across the street. She told me Bill have been over several times visiting with her dad and just seems to want to "talk". My other neighbor tells me the same thing. I know Bill is on the phone all the time talking to our friends about this... but not to me. I don't know if he tells them he is concerned? But to me he says... you will be fine, don't worry, wait and see, or just nods.

I am so frustrated. There are a lot of decisions I need to make and if there is no feedback I cannot make any. Just one example. Some of the transplant things I have been reading specifically says if you come to our facility with a spouse or family member you will most likely be staying for a long period of time. And, once you get that call you have to leave IMMEDIATELY so, if you have pets there isn't going to be time to look for babysitters for them, so it's best not to bring them.
I told Bill this today, and he says ... "then we may as well get them put down right now!" This is his wonderful way of making sure I know that he thinks I am being unreasonable, so he will make an unreasonable remark back to me... VERY GROWN UP of him! It just infuriates me.

So, this is what I have been dealing with. I have asked him to read or listen while I read that 5 page thing I posted here about transplant from the beginning to the end... he says he doesn't need to know.

Yes... Denial is expected with him as well. But come on! We are grown ups, we used to talk about everything. Lately, if I have a different idea than his... I am looking for a fight. If I disagree with him I am being a bitch. I dunno? I do no... I don't need it. Not now.

I want to be able to sit down and talk to him and I NEED TO SOON!

We have decisions to make. Once they approve me and put me on a list we have to be within an hour of the hospital, bags packed ready to go. It may be 3 days, 3 weeks or 3 years. And, people die everyday while waiting for a lung. So... we need to make long term plans.

And, I may have an eternaty to do all the things we need to do. Maybe he is right?! (god I would hate that!) lol

I know I am putting off writing my advanced directive. And, I know they will insist on one being done prior to surgery. I also have to go through my house room by room and write a Will for myself. That is a priority. I just have to do it. It's one of those things which is easily ignored and put at the bottom of the list.

I gave myself a goal to have either one done by Sunday. My will is going to take more than one day, but just a start needs to be done.

Almost time to start dinner. I think a burrito tonight out of ground turkey w/taco seasoning and sauted onions/peppers. I'll snap a pic.

I forgot to put my memory card back in my camera so no pic of dinner.
I had a very healthy dinner of... sauted onions/peppers (sauted in 3 sprays of "I can't believe it's not butter) 2 tablespoons refried beans, 1/4 cup of browned ground turkey with taco seasoning and green chili's and onions added, some fat free sour cream and fat free cheddar cheese. I also had more of the black bean and corn salad. And, water.

I haven't taken anymore of the fiber, and I actually feel like I don't need those late night snacks. :) Maybe this will help me.
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