Need a break

(TBT to pre transplant fighter...trying to get some motivation here!)


It really does amaze me how sick everyone is this year. I have never seen my family as sick as we have been. And I, like I am sure most of you are, am so sick of it.

I have been to the labs and doctors office (a more local one, my primary dr) a few times this week, my throat has been so swollen and sore that I can barely swallow. All they can tell me is that I don't have strep. UGH! Well, what the heck is it?!

I have been coughing out actual blood clots that are forming anywhere from my sinus to my throat. And its not pretty. I took a picture and showed it to my mom (gross I know but she is like one of the only people I can show who doesn't get totally nastied out) because I needed somebody else who if necessary could tell the doc how bad it looked! Its not pretty guys so when you start to get sick, don't wait too long because it can get bad....fast.

But I am blessed with an awesome team in Madison because they threw me on antibiotics asap so whatever this is would be get put in the hospital and I could feel like a normal person again. After taking only 1000mg my throat is already less sore and not as much blood coming from wherever. 

But this brings up the point I have always said for years. The reason I will wait an extra 12 hours in pain instead of going the the ER. Why I would rather drive to Madison to see my doc vs drive to a primary. My doc knows me, knows I know my body, has my charts, knows CF, knows transplant. 

I want to put it on record that I am sure all these docs are wonderful on "normal
 cases on "normal" people. I would trust them to look at Laila, I would trust them if Jeremy, or any other family member went there. But not for me. Do any of you other sick/chronic disease people feel this way?

Two examples in these few short days that make me frustrated (just two but there were more...)

I tell the nurse taking my vital signs, "My blood pressure is going to be a little high, but thats pretty normal for me right now." Just letting her know since I know, really nothing to question. But she did anyways with an, "You think so?" to which, well, I am not proud but when I dont feel well my patience isn't as high so, I straight looked her with an, "I know so." Ooops may have been a little snarky, because she is doing her job as a nurse. But when I come in and tell you, since its been a battle for over a month now, don't question my like I'm dumb. There is a way to ask without questioning my ability to know my own body. 

When you have a disease in which you have to often OFTEN follow and know your body and what feels right or whatever....you learn it very well. I can now after years tell you when I even have a fever of 99. Crazy but you learn how to listen to signs.

The other thing is that the prim doc said he didn't want me to just take antibiotics because they are only saved for situations that need it, and since I was showing negative for strep, not to take any. Its probably just viral. Yes, he is 100% correct and would never argue that if was taking a look at, again, Laila, Jeremy or somebody "normal" but guess what, I am not normal (haha very funny guys...I was only talking health here) and need a little extra attention. 

I not only have CF, and a lung transplant, but because of the later I have NO immune system. You need to fix this, make sure its not bacteria. Insert call into my transplant coordinator and BOOM I'm only Levaquin and heading back so I can get more labs done. PHEW.

So here I sit at home fighting yet another illness of some sorts. Coughing out blood, and I can tell you the color red remind me of CF and my fears...of death...and I am done with that for awhile. Hurry up spring and heal me fast meds, I am ready and beyond ready to be that healthy girl in a healthy girl body again!

Work, Work, and more Work

Its been over a month and today is the first day that I have said the words out loud, "I think my virus is finally gone." Praising the Lord for that number above.

This was from my spiro this morning. Not only is it my transplant normal, but it is even better. This is the highest number I have ever created on my machine. I just about cried. Not only that but tonights blood pressure was lower (at a whopping 148/88) plus my blood sugar was 75 without taking insulin. 

My Tac has been lowered to about half of what it was. So the shakes, and anxiety, and sleepless nights are getting so much better. Which in return will help all of the above issues. This Monday I am getting it checked and as much as I want a normal level, it would be sort of, kind of, nice if it was high a bit because it would mean I coud get it lowered again.

The hard work is really starting to pay off. I am still avoiding big crowded areas, this weekend will be my first time is a large crowd but am so prepared for it. Trying to stay in as much as possible so I feel I haven't see anyone in so long, except Connie who comes over...thanks Friend. I have been walking and running on the treadmill (tonights run was done to Micheal Jacksons PYT...good running song. Yesterday was MMMBop) I lift weights. I listen to my alarm 5 times a day, swallowing a handful of pills. I am training myself to breathe deep from the diaphragm. I am eating better (for the most part...peanutbutter and chocolate covered kettlecorn is ok, right?!) and really just trying to get healthy again.

Now that I am getting back to me, I am hoping that my house can finally get cleaned and organized. Anybody know of somebody really good at doing this?! :)  

Another plus is that our family got chosen to be on Family Feud! OH MY WORD!! We tape this summer (not sure when yet) and will let you all know when it airs. Is this crazy or what? I am pretty sure my mother is the most excited person I know, followed closely by Jeremy. Now don't get me wrong, I am excited too, but those two are geeked to the max.

March brings another talk, and this one is one I am excited to be asked to do. We get to talk to a bunch of nurses about our experience in the hospital, how and what we liked that our nurses did. Thanks to all the hard working nurses out there, us chronic patients love what you do!