Today was a bad day, filled with a fever that lasted about 6 hours. Yesterday I had a mild one on and off, and then today I woke up with a 37.1 which is not officially a fever, but I felt miserable. By noon it was 37.8 and was up and down like that all day. At the worst of it, it was 38.06 (after Tylenol) and I have not felt this miserable in a long time. Emotional and hot, with everything spinning around me. Just terrible.
My mom went to the clinic to get my meds, and I asked her to see if she could find my doctor and ask her what we should do. I knew it was time to switch these IV's, and I would have to do it in the hospital to make sure I was okay. Dr.T found me a bad for tomorrow, which is great. No ER. So there we have it, I was hoping to do all the waiting for my new lungs at home, and I'm not even on the list yet and I'm going back to St.Mike's. Not the best of days.
For the last week or so, may be two, I have been very down. I have been having a hard time with all the set backs with tx, and with all the infection and how quickly my CF has become too hard to manage. I have not shared a lot of this on my Blog, but I am now. I feel that it's my outlet, and I have to.
I like that everyone feels that I am very positive, and that I am getting through this so well, but I don't feel that. I am so defeated right now, by all of it, it's hard to stay positive. Especially when I have a high fever and think the world is going to end. Sometimes I feel myself getting used to things that I do not want to get used to. Getting used to so much loss, that it all seems like a blurr: The things that I have lost versus those that I have gained. Those moments scare me, when you start to think that may be all the fighting that I have done for all those years to have a normal life mean nothing, when in the end I am still the girl in bed all day with the oxygen tube, the IV coming from the Port in her chest, the nebulizer by her bed. I know it's all worth it, I know that. But sometimes, in those moments when I am so sick, in pain, and fever, and emotional defeat, I just don't want to fight for any of it. Those moments are rare. But lately they have been more and more often. I guess the more sick I get, the more it's about the pain, and about being terribly sick than anything else. I hate those moments.
Many people that have had a lung transplant have told me that this road would be a difficult one. I didn't know however how difficult it would be. If someone told me in December what would be happening now, I would not have believed them. The fact that I am still told things will get worse before they get better, well, I don't want to believe that, but I do. Experience tells me now, that this is unlike the battles that I have had to fight before. The ones that I walked away from strong and victorious. I think I have finally come to grips that my lungs are no longer on my side. They can no longer sustain life in my body, and the only way that I will return to life is new lungs. I guess I have been hoping for the past little while that things would still somehow improve and I would gain a few more years without tx. It's happened before, and people keep telling me that. But I know it's not the case. I can feel the heaviness in my chest. I feel that pressure under my ribs, I feel their weight and how hard they are trying to work. For someone like me, that always fixes everything, I cannot fix this. I can do all my treatments perfectly, and keep my blood sugars perfect, like I always have, and this battle is lost. I put terrible amounts of pressure on myself to fix this and I can't. I look at it as defeat, when it's just a fact. CF kills people. Yes there are things we could do better. Do our treatments, work out, eat well, keep our blood sugars down, and weight up.....but for some of us we do all those things, and it still takes our lungs away from us. Just a fact.
As much as I want to forget how terribly hard this time was, I never ever want to really forget. Since I know that there will be a day, may be 8 months from now, may be a year from now, when I will worry about every day things. And it's then that I want to remember, and think, wow, I went through that. Shit.
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9 years ago
7 comments:
Behind great strength is fear Nat and I think that we all know how scared you are. It sucks so bad that you have to face CF and to feel so sick at such a young age. Nobody should have that wisdom. Do you think that your Chicken Pox vaccine could have something to do with your fever? As always you are in my thoughts Nat. Please let me know if there is anything that I can do.
Love,
Sarah
I wish I could just meet you and give you a big hug. I truly believe that the strongest person is the one that admits when she is scared, pissed, down and just plain sick and tired of being sick and tired. You don't have to be positive all the time to be optomistic, I'm definitely learning that.
I think you said you watched that Michael J. Fox program a few weeks ago. I am now reading the memoir that it was based off of, "Always Looking Up; The Adventures of an Incurable Optomist." He talks extensively about his down days, his fear, and the days he wants to scream at the world and how that's all part of the process of dealing with any chronic illness.
What you are fighting is hard for most of us to imagine. I admire you as always for being totally honest at how you are feeling right now. Lots of love and thoughts for you and your family.
I was reading something I wrote two years ago this month... I had been waiting a year for new lungs already at that point... and I would wait a whole additional year, but of course that was something I didn't know at that time. I talked about how long we had been waiting and how I felt weighed down with all the equipment that was required to keep me alive. I JUST wanted to feel energetic and vibrant and free to jump out of bed and enjoy the day.
Something that kept me going while I waited was that I would literally daydream/imagine/picture, whatever you want to call it, me doing something with my new lungs and it would automatically make me feel better. I know it sounds silly, but even when it's hard to imagine a reality other than what you're facing now, your future IS your reality.. it is just waiting to happen...
This last time I was in the hospital, I was so sad and just felt a sense of 'doom.' It was hard for me to 'get out' of the reality of the situation.. The reality was I was in the hospital for chronic rejection... I decided I was going to find something in every part of my day that was awesome... whether it was my lunch was dang good or that my nurse had great hair or I would look over at my hubby and just feel better... SOMETHING to distract me... and then each good thought led to more good thoughts... and 5 days later I was going home.
I know you are an optimistic person, and that's why you are the fabulous person you are and have done so well... but sometimes it's in the darkest times when we are feeling are worst, if we can find some sort of light, no matter how small... More light comes.
BTW, Nat can I have your email? Or are you on Facebook? I'll try not to leave so long of messages! :)
Just know I am thinking of you and picturing you running around with that little one every day.
Sara
Dear Natalia,
I'm sorry that when I saw you at clinic, and promised to e-mail you, I did not.
I wanted to say how incredibly moved and touched I felt by your honest and frank discussion about how you feel. I feel what you described sometimes about CF (perhaps in a different way), and I am happy that someone is brave enough to put this out there.
My friend Michelle and I have been having conversations about how best approach CF. Which are basically questions about this: how does approach life when, no matter what one does, the thing one is trying to prevent will ultimately happen? (and where treatments only keep things at bay just a bit longer, and as you movingly described, sometimes not at all).
I have to say that I don't know, even though sometimes I think I do, the answer to the question about how to relate to a situation like the one you are facing. But I am infinitely grateful that you have said something that, perhaps, we are feeling in one way or another.
I wish for you moments of little joys to combat these other moments. And I'd like to repeat Sarah's call: If there is anything I can do, and by anything I mean anything, let me know. I suppose one thing that your post has taught me is that sometimes there is nothing "to do": in light of this, maybe "doing" means just being sad with one another. Maybe.
Jehangir
I agree with Sarah: Fear is the catalyst for extra ordinary strenght. A strength you have and share with us through your blog.
BUT...it is OK to be afraid, to feel negativ when everyone says you are always so positiv. And it is OK to share your fear and negativity.
We are your friends - we love you ANY way!!!
We wish we could be there for you and cheer you up in person but alas there is whole big country full of Prairies and Rocky Mountains between us. But if you ever want to vent you know where to find us :-)
xox
Mark
I so much wish life were more fair. There is just no way to get our heads around why some people face such huge life challenges and others don't. All you can do is do the best with what you have and you are absolutely doing that. That doesn't make it more fun or less frustrating, unfortunately. Try to take things one day at a time - I know I get much more overwhelmed when I lump the entire future together. Know we are all cheering you on.
I'm sorry I missed this post Nat, I just wanted to comment and say that your strength is still there, even in your down days. You still do not give up the fight. Allow yourself to have the down days, the "why me" days, or "what am I doing this for days", dont' be hard on yourself. You know it's just a bad day, and you can say to yourself "today I feel shitty and mad, and crappy and that's okay".
You are a strong person, despite your bad days or negative thoughts, I can only imagine the fear you live with, and what makes it even worse is the not knowing.
Thanks for being so heartfelt and open, you remain an inspiration, even in your crappy moments. :)
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