Broken

I am falling apart.  I am trying so hard to keep myself together here, but it seems like no matter what I do I can't feel good.  I don't like to complain, but this is getting to be too much.  Not only for me, but for my family too.  I can barely do anything for myself so I constantly have someone doing something.  They are all constantly worried about me and that gets to me too.  I don't like seeing my family upset.  I know it is inevitable  because they all love me and hate seeing me in the condition I am in.

I just got out of the hospital Thursday the 20th.  I was never able to take the Oxygen off like I normally could after a hospital stay.  Not even for a little while.  I am now completely dependent on it 24/7.  Also I use to be at 3 liters when needed.  Sometime I would go up to 4 when I breathing was harder.  Now I am at 4 liters all the time, sometimes 5.  At the benefit I did alright.  I had a few nasty coughing attacks, but for most of the day I was comfortable.  I made sure I had enough Oxygen with me to last the whole day and had Albuterol on hand.  Half way through the day I was already exhausted and wanting to take a break, but that was not possible at the time. I was able to use my excitement about the day as energy. Sunday I felt ok, but was very tired and that lasted for a few days.  I even got a little bit of a sore throat.  I was nervous because I was getting a cold of some kind.  I took a few Zicams and that seemed to make that go away.  With Jay being around on the weekend and Bobby being around Monday and Tuesday I was able to completely take it easy.  For the rest of the week I was OK.  I can't say good because I haven't felt good in awhile.  Good to me is able to get from the couch to my chair and actually do something, anything even empty half the dishwasher.  That hasn't happened since I have been home.  Feeling OK to me is when I can breathe comfortably when sitting still.  That seems to be my new baseline.

Last Thursday night my dad came up and stayed with me.  Jason had to go overnight on business and didn't want me home alone all night long.  I was not happy it had gotten to that, but I surrendered and I am happy that I did.  My dad helped me with everything that I needed including cooking, cleaning, getting things I may need, helping me wash my hair and carrying me upstairs to bed.  He was very helpful and the night would have definitely been more difficult without him.

I try my best not to complain, but Monday was a really rough day for me.  I was decent until about 3:00 and then my whole body started hurting.  It hurt mostly in my back, all my joints, and my chest.  I was coughing a lot too and moving a lot of stuff.  I took some Motrin to help relieve some of it and shortly thereafter I got the chills.  I knew what that meant....fever.  When I took my temp it was 102.2.  It is too early to be getting fevers already.  On top of all of this I could not breathe and I was exhausted.  I couldn't fall asleep because I was cold and hurting.  Then the chills went away and I started sweating.  It took till around 8:00 for me to feel decent again.  Last night I really didn't sleep that well.

When I woke up this morning I was much better than yesterday.  I was breathing OK and not struggling.  I still called my doctor and let her know what was going on.  She called in an antibiotic to be safe and told me to take it if I get a fever again today.  I felt fair for most of the day except for the fact that I had no appetite what so ever.  I forced down what I could, but it really wasn't much.  Around 10:00 or so is when I started to feel the chills again.  I took my temperature and it was 99.8   I took some meds and now just waiting for things to settle down for bed.  Between the med and all my treatments my body hasn't settled down yet.  I really wanted to take a shower tonight, but I honestly don't think I have it in me.  Right now the fever is at 100.2 and I feel it breaking.  Once it is normal I am going right to bed.

This is really frustrating me to no end.  I don't know what to do with myself.  I am wondering if I was so miserable because of the huge pressure change in the area, but I don't see how that can cause a fever.  I just don't know and that is what scares me the most.  How bad am I going to get before I get this transplant?  I am really trying to stay strong, but part of me is losing faith in myself.  I don't know what to do...When I talk about it, I feel like I am complaining and making everyone worried.  At the same time though, I told everyone I would be honest about how I am feeling and holding it in seems to make it worse.   I guess right now I just ask for one thing while I am waiting.  To be able to breathe and remain comfortable.  If that means I have to remain sitting at all time, fine I can do that, I just ask to be able to breathe.