Rollercoaster

I feel like I am on a roller coaster ride.  My health is up and down, up and down.  Not just day to day either.  I can be fine one hour, then feel horrible the next, then fine again.  It is extremely frustrating.  It makes it even harder to plan and do anything.  I know all about day to day, but seriously!? 

On Friday I had an interview with the radio station WDOE 1410.  I came down to Dunkirk for the 9:00 am interview feeling great.  I didn't even need my oxygen during it.  Then I went to my Busia's for dinner at noon.  I started feeling a little light headed so my dad helped me set up the oxygen for while I was there.    I ate and visited for a little while and then headed to my mom’s.  We had planned to get together to work on baskets.  I used the O2 to help with the breathing, especially because I was moving around.  I felt OK for a while, but after two hours I was exhausted and had to stop.  I laid down for a little while to rest and felt better.  Jason came over and right before we left to go home I could not stop coughing.  It was the type of coughing where I could not talk between "breaks" because I was struggling to catch my breath.   The violent coughing was using my stomach and chest muscles and those were aching.  Nothing seemed to be working.  We were trying some my little tricks.  This including Jason lightly rubbing my back, drinking water… not even Albuterol was stopping it.  We left and started for home so I could do my vest. I finally after thirty-five miles of driving I started to relax.  We pulled into our driveway and I was fine like nothing ever happened.  This is not the only time something like this happened.  It seems to be happening more and more. 

I have gotten sicker faster than normal this time around.  Yes it does have to do with my decline, but also there are a few other things that contributed.  When I came home from the hospital I realized my nebulized antibiotic, Cayston had still not been delivered.  I had ordered it over a month earlier and they told me I would have to wait a couple weeks for it.  I didn't care because I didn't need it for a few weeks.  I always order meds as early as I can (especially these antibiotics) for cases like this.  It was suppose to be delivered while I was in the hospital, but when I got home, it was still not here.  I called and they said I needed a letter from my doctor stating that I needed it.  So I did that and a few days later I got it.  I started taking it, but every time I did it, my breathing got worse.  I felt like I was having asthma attacks right after.  So I called my doctor and they ended up switching me to a new antibiotic called Colistin.  This is also a nebulized antibiotic.  I got it, but was not given directions on how to use it.  The med comes in powder form and I have to reconstitute it with water.  I didn't want to guess how much so I called the pharmacy.  According to the machine that answered they were closed for training that day.  It was a Friday which meant I had to wait until Monday to try again.  So I called them back on Monday and, they gave me the instructions and I started it.  I really like this one.  It is easy to inhale and it doesn't take too long.  However, I had gone so long without antibiotic (between no Cayston, not tolerating Cayston and then waiting on how to use Colistin) that my bugs were already taking over.  So that Saturday I got a high fever and called the afterhours doctor for an oral antibiotic.  The woman who answered me said it was against policy to write a script after hours and I had to wait till Monday.  I was NOT happy with this.  I would have fought the woman, but I found some Levaquin in with my meds.  I always keep extra of everything, again in case of situations like this.  I called Monday to complain about the policy.  My doctor had never heard of this before and she did not seem happy about.  She sent a script to the pharmacy and said she was going to look into why this happened. 

As you can see this has been a fun filled month.  Now that I am on the two antibiotics I am feeling OK.  I am still not doing much, but for the most part I am comfortable.  I am not able to go out much because I am basically wheelchair bound.  My breathing takes up too much energy for my body to do much else and it is exhausting.  As much work as it is I do continue to go places when I can.  .  I like to go places and see people.  Even if I am not feeling too great I try and get out.  I hate sitting around all the time.  I get bored and tired of the TV and my computer.  That is all I can really do on most days.  I use to keep myself busy with FarmVille on Facebook, but I think I am done with that game.  I really use to enjoy it before you needed other people to help you get anything done.  I like to just go on and play a game.  That and it takes way too long to take care of the farms.  I would go on during my vest and be done about the time my vest was finished.  Not anymore.  End rant. Lol  I am planning on going into the hospital for a tune up on the 10th so that I can be comfortable at the benefit.  I am really looking forward to it!!