I honestly don't even know where to begin.... So I left off last time talking about the Tygasil and being on Zofran for nausea. Well that's done. The Zofran wasn't working and I was having nausea on top of stomach pains and I lost over 5 lbs from not eating for 4 or 5 days. So they decided to stop the meds after a week and a half and I would be de-accessed for the weekend until I saw my doctor here in vegas. I figured I had 4 days to have some fun until I was hooked up again, well wrong again! For those who don't know I am allergic to a million different medications and they all happen to be some of the best IV medications out there for us CFers. So at my doctors my oxygen was 93-94 which was great to see that it was still hangin in there but then came time for my PFT's.... DUM DUM DUM!!!!! My Fev1 was 42%. Good: They didn't drop any from not being on meds for a few days. Bad: That is still 10% below my base line. So my doctor was looking at my cultures and the medications it's sensitive to and looking at my allergy list and there is nothing. The 2 things I respond best to is IV Tobra and Merrem but I am not growing pseudomonas so he didn't want to put me back on IV's just for the sake of being on them when it won't really treat the staph that I am growing. So now the plan is for me to see an Infectious Disease doctor to see if they can find a combination of medications or if they wanna try one of my medications I had a reaction to again and see what happens. Right now I am on prednisone to help my wheeze and Bactrum to help keep everything at bay and my lung function from dropping even lower. So yes that does sound like a great plan and I am happy with it but I have one BIG problem.....
I go to school in Reno 450 miles away!!
I'm tired. Tired of working so hard just to fail. Tired of doing everything my doctors say just to keep getting sicker and sicker. I'm tired of not looking sick but having to struggle for each breathe. I'm tired of CF getting in my way of following my dreams.
For most of my life CF never got in my way. I did what I wanted when I wanted, 2 weeks on IV's would clear up any infection. I graduated with honors from high school. Last spring semester were my first two F's EVER. This semester I've been to sick to even stand up while showering let alone go to class. I just want to find a medicine that works and get better so I can live MY life the way I want to. I think I'm allowed to be selfish when it comes down to.
For those of you reading this that are blessed to have your health never take for granite a walk around campus, a lecture with a great professor, a deep belly laugh that takes your breathe away, taking a steamy hot shower, a walk to the mail box on a nice day, a night out with friends, a shopping trip with the girls, or even a hard days work to pay the bills because some of can't do those things with such ease. For some of us just walking to the next room in the house leaves you out of breathe and needing to rest.
Enough of my rant.... Now you see my dilemma. I solved my "unable to work saving money dilemma" that is the moving home part but what about my "need to see the ID doctor here in vegas but I am going to school in Reno, but I am to sick to get to class anyways" dilemma. What a crazy few months I've had.
I have already missed about 2 weeks of school, one of which was spent in the hospital. I have worked with all my teachers and had my midterms pushed to the week after spring break. I figured I would have this whole week to play catch up and get ready for school next Monday but that hasn't exactly been possible since I didn't finish the Tygasil and my doctor doesn't know what to put me on so I've been way to sick and exhausted, physically and mentally, to even think about studying and starting the 2 papers I have to write. So I decided it's better to withdraw and keep financial aid for the fall then to fail and loss all the money plus have F's on my transcript. So right now I am trying to decide if I want to withdraw from all 5 classes or if I should keep 1 or 2. In my head there is only one class that I would be able to catch up in, but then we have a problem with me keeping one class. I need to see the ID doctor and I need to see him soon, but that is here in Las Vegas which means I would be missing more classes. I already decided to move back to vegas and transfer schools to save money and be closer to my mom to help when I get this sick, but now I keep thinking I need to come 
back sooner. I hate the thought of withdrawing. For one, that is thousands of dollars down the drain, and two I don't want people to think I'm lazy, or taking the easy way out or just a flat our failure. My family has been really supportive but that is because they have seen me at my very worst and know how hard I've worked to get where I am today, and friends within the CF community have been supportive because they've been in my shoes before. But what about those friends who know I have CF but don't know much about it, or even what about those friends who have been with me for a few years but still just don't grasp what it's like because the sickest they've ever been is the flu. Unless you've had a terminal illness or have seen someone struggle with is for 20 years it's hard to understand. I don't want them to think "well I saw her yesterday and she looked fine" or "I wish I could be set up with the DRC so when I'm failing classes I can have someone write an excuse for me" those are both examples from real life experiences from when I got sick and failed a class last spring. Most recently I got "Must be nice to be in your pajamas all day" I should of come back with "it must be nice to be able to breath and live your life."
back sooner. I hate the thought of withdrawing. For one, that is thousands of dollars down the drain, and two I don't want people to think I'm lazy, or taking the easy way out or just a flat our failure. My family has been really supportive but that is because they have seen me at my very worst and know how hard I've worked to get where I am today, and friends within the CF community have been supportive because they've been in my shoes before. But what about those friends who know I have CF but don't know much about it, or even what about those friends who have been with me for a few years but still just don't grasp what it's like because the sickest they've ever been is the flu. Unless you've had a terminal illness or have seen someone struggle with is for 20 years it's hard to understand. I don't want them to think "well I saw her yesterday and she looked fine" or "I wish I could be set up with the DRC so when I'm failing classes I can have someone write an excuse for me" those are both examples from real life experiences from when I got sick and failed a class last spring. Most recently I got "Must be nice to be in your pajamas all day" I should of come back with "it must be nice to be able to breath and live your life."I'm tired. Tired of working so hard just to fail. Tired of doing everything my doctors say just to keep getting sicker and sicker. I'm tired of not looking sick but having to struggle for each breathe. I'm tired of CF getting in my way of following my dreams.
For most of my life CF never got in my way. I did what I wanted when I wanted, 2 weeks on IV's would clear up any infection. I graduated with honors from high school. Last spring semester were my first two F's EVER. This semester I've been to sick to even stand up while showering let alone go to class. I just want to find a medicine that works and get better so I can live MY life the way I want to. I think I'm allowed to be selfish when it comes down to.
For those of you reading this that are blessed to have your health never take for granite a walk around campus, a lecture with a great professor, a deep belly laugh that takes your breathe away, taking a steamy hot shower, a walk to the mail box on a nice day, a night out with friends, a shopping trip with the girls, or even a hard days work to pay the bills because some of can't do those things with such ease. For some of us just walking to the next room in the house leaves you out of breathe and needing to rest.
Enough of my rant.... Now you see my dilemma. I solved my "unable to work saving money dilemma" that is the moving home part but what about my "need to see the ID doctor here in vegas but I am going to school in Reno, but I am to sick to get to class anyways" dilemma. What a crazy few months I've had.
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