back from a long absence

[NvrGiveUp]

Hi everyone. Sorry I've been away so long. Things have been pretty tough with T. Her breathing is shallow and the doctor wanted her to go on a trach/vent ASAP. She left for Brazil to see her family and friends on Christmas day (I went a couple weeks ago and just got home today) and she was supposed to be home now, but decided to stay 2 more weeks. I know it's dangerous for her, but isn't everything with this disease dangerous? So though I'm happy that one of her friends has a visa and was able to spur of the moment buy a $1000 plane ticket to fly back with Thati, I'm also worried about her everyday. I will just feel safer when she gets back and we are closer to her docs and medical care that isn't really available in Brazil.

On a happy note, she did experience the Olinda Carnival and made it through. It was so HOT! No a/c, so she had a harder time with breathing and had to use her bipap a LOT. It was so touching to see all of her friends surrounding her with love and support. Many of them would have to go off to another room and cry because they just love T so much and Carnival was a time when they all used to party together and celebrate and T was one of the wildest ones to be around. She spent some of the time in the wheelchair at the window watching the massive crowds of people squish by and the bands march by. But when she wasn't able to breathe well we had her set up on some air matress and lots of pillows propping her up in the main room so that she was still with everyone and still able to see the Carnival. We had her on the bipap most of the day with at least two fans blowing on her at all times. At night it was a lot easier because it was cooler out. The last night we spent the night there was so beautiful. We were outside on the back patio of the house that 25 of us had rented. T was on a mattress with her pillows and her bipap. She was surrounded by her friends who were playing brazilian instruments and a guitar and singing beautiful brazilian music. One friend was even rubbing her feet for hours and hours. The sky was clear and the stars were shining bright and it was just a beautiful experience to see T at peace surrounded with love. We stayed out there until 4 in the morning before going inside. Then her friends grabbed their drums and tambourines and marched through the entire house waking up all of the people who had been asleep for only a few hours. I captured it on video, hysterical. That was the experience of a lifetime and I'm so glad that I got to share it with T. Now I will just be praying for her safe return and that we will both be strong enough for what lies ahead. I still believe in miracles but I know the chances of her being on a ventilator soon can't be ignored. We're trying to mentally prepare for it the best that we can. Please pray for T, and for me too. God bless you all.
Hugs,
Pam

 

[Al]

Hi Pam. So good to hear that you and T are OK or as OK as things get with all this fun. We tend to lose track of people if they don't post in a while as we have quite a few new members. Be sure to read up on the Lithium trial. Probably the most encouraging news in a while.
AL.

 

[brooksea]

Glad to hear it! Wonderful she was able to experience such joy!

 

[ccox]

I'm so glad you both got to go and have a fun experience. Living life to it's fullest is one definite way to combat this horrible disease.

 

[CindyM]

Thanks for the update, Pam. As Al says, we often wonder about our members but the board is bocomming so popular :-D that it is hard to keep up these days! T's vacation sounds like just what she needed! Cindy

 

[Lorie]

Pam

It's Ok to give them what ever they want. Why not? Nothing to loose. But to gain some Happiness and Enjoyment. Spoil T.- rotten. That is what I do with Tim.

Lorie:-D

 

[NvrGiveUp]

tough day alone

Today is a tough day. I've really been missing T a lot today. It's hard to be here without her, hard to be separated... even though I know that it is what she wants. Selfish I know. I just feel like a blob today. I've watched a lot of TV to melt my brain with. Anyone else try to lose themselves in the TV? Stupid TV. I also have been trying to eat lots and lots. I hate what I've become, I am almost 40 pounds heavier now. I know that I don't exercise and that is probably the worst problem, but it's hard to find the inspiration to exercise. It's going to take everything I've got to do it. Anyone else feel like this? I know I've got to get myself together and that T doesn't like to see me in this state of not taking care of myself. It's hard enough for her to deal with what she's going through without me adding to it. Anyone have any advice, or has anyone gone through similar behavior/feelings/self destruction? I hope that I snap out of this funk soon.

Thanks for your thoughts,
Pam

 

[CindyM]

I bet a lot of us have been there. I think it is OK to give in to the blues once and awhile. My theory is that this is your body and mind's way of asking for a rest, given all you do as a CAL. I heard that if the mood lasts longer than a couple of weeks, it might be time to ask the Doc for something to pull you back to feeling "normal." (Whatever "normal" is! :-D)

I am guessing that as the time comes for T to come back, you will feel a sudden urge to take advantage of that warm sunshine you guys have down there and you'll be out walking off the weight and the mood in no time! Cordially, Cindy

 

[NvrGiveUp]

thanks Cindy

It's amazing what coffee can do. Today is better, I'm trying to focus on my job search. I really hope that I can find a good job in this area that will allow me to take care of T and make life as nice as possible. It is really taking a while right now to find a good job. My patience is wearing thin. That's another reason that I'm down, I just want to know that I will be able to be as financially secure as possible for us. Plus worrying about when I start to work, who will be taking care of T while I'm at work. Her cousin is supposed to move in with us and do that, but I also hate to rely on her too much. I just want the best for T. On a positive note, she is seeing an accupuncture doctor in Brazil and seems to be getting some good results from it. I also think being there and around her friends and family helps her to feel stronger too. Thanks for letting me know about the lithium trials, I will ask T's neuro about the possibility of trying it. Good luck to everyone who is already trying it, I hope that it will have miraculous results... why not hope for the best, right? God bless and have a great day.... I'm going to try to

Pam