Small Set-Back

Well, as with much of life, I have good news and bad news. Good news first: I went to the doctor on Thursday and it's official...I'M OFF IV MEDICATION! The picc line is out! I'm freeeee! I can now train as much as I want and have less treatments to do.

Now for the not-so-good news: my doctor, along with my entire family, have forbidden me to participate in the Lighthouse Sprint Triathlon on August 2nd with my roommate. Even though my stubborn half knows I can do it, and wants to do it in spite of everyone's advice, I think this time, I'll sit out. I think I'm ok with it. My boyfriend, Tim, is thinking about making the Lighthouse Tri his first (instead of Redman) and my roommate is definitely still participating so I will be there to cheer them on. I can still train for the Redman Sprint Tri in September, and even though it goes against my competitive nature, my swimming could probably use the extra training time.

So today, I begin my official tri training. I found a program online that is meant to prepare a person for a sprint tri in 12 weeks. I only have 10 weeks until my tri so I'll be jumping into the 2nd or 3rd week of the program. I can do most of those distances now, but don't worry, if it's "too hard" (again with the relativity) I'll take it down a notch...really.

UPDATE: Since it's so hot outside, my mom freaked a little when I told her I was going running. It's my fault. I'm still trying to get used to how long these daily treatments actually take. I'll get up earlier in the future. So today I'll do the elliptical trainer. I don't know how long I'll do it. Is there some kind of conversion chart out there that can tell me how many minutes on the elliptical is equal to miles (or mins) running?

First Legal Gym Visit!!

I'm so excited! Today I got to go to the gym legally for the first time since going into the hospital! Don't kid yourselves, I've gone a few times behind my doctors' and parents' backs. Today though, my dad said I could go if I didn't "go crazy". Luckily, the word crazy has a very vague definition so I just did what I wanted to do.

I went in this morning after doing the watering (price of my room and board) and all my treatments. Melissa, my summer roomie, and I made a "workout mix" on Sunday so I put that on my ipod and hopped onto one of the stationary bikes. I went fairly hard for 12 miles (about 43 mins if the meter can be trusted) and then coasted for another 7 mins to make a grand total of 13.5 miles in 50 mins.

Overall, I'm thrilled about how today went. I only coughed a little, which exercise will always do (and therefore counts as 1 chest pt) and I felt great! The Lighthouse tri's bike leg is 12 miles on a flat course so it's encouraging to know that at this point I can handle that. The only downfall was that I definitely broke the "no sweating" rule. Oh well...the dressing and picc come off on Thursday anyways right? :)

Roller Coaster

The last month or so of my life has been somewhat of a roller coaster. At the end of May, I moved out of my apartment and into an "apartment" that is attached to my parents' house in Edmond. My friend Melissa came down from Virginia to live with me. Originally, the plan was to train together for the Lighthouse Sprint Triathlon at the beginning of August. However, like many things in life, our plans changed.

For the past 3 summers, I have worked as a therapy tech at a local rehabilitation hospital. However, this summer, my boss informed me that he didn't have hours for me and I would have to find another job if I wanted to work full time. Crap. Knowing that in this economy my chances of getting hired for the summer anywhere else were minimal, I decided to talk to the head of nursing in the same rehab hospital and see if I could be a nurse tech for the summer. Nurse techs work 12 hour shifts and see some pretty nasty stuff. Let's just say that I now know exactly why I'm going into therapy and not nursing.

I think I've mentioned before my obsession with being "normal". I hate telling employers, coaches, teachers etc. that I have health issues. I don't want special regulations or concessions. I want to do what I do just like everyone else. So, I didn't tell my boss about my cystic fibrosis. I didn't tell her that fatigue can make me really sick, nor did I tell her that I'm supposed to be doing a lot of treatments which are difficult to fit into a 12 hour work day. I also didn't stop training for the triathlon with Melissa. Maybe I have a superwoman complex, or maybe I'm just childish, but I honestly thought I could handle it. You see, in my head, I'm not sick. I'm normal, and there was no reason (in my mind) that I could not work an extremely physical job for long hours and still train for a triathlon.

I soon found out how very wrong I was. I lasted a week before the trouble started. After a week (3-4 days of 12 hour shifts) I started to get really fatigued. I hadn't been good about doing treatments so I got sick. It wasn't a "bad" sick at first. It was the kind of thing I deal with often, and fight off either on my own or with a round of oral antibiotics. So, without getting too worried, I started myself on the typical antibiotics and started doing my treatments more (if not perfectly) diligently and continued to work my normal shifts. Instead of getting better though, my health continued to decline. I got sick to my stomach several times a day, coughed all day and all night, and lost my appetite. I lost around 20lbs. I couldn't walk for long periods of time without feeling like passing out, and stairs were almost entirely out of the question. It wasn't until a particularly painful bike ride with Melissa that I finally decided to call the doctor.

I went in to my appointment, they tested my lung function, weighed me, and immediately drew up my hospital admission papers. I spent 4 days in the hospital receiving iv antibiotics and liquids (I was really dehydrated apparently) before being discharged with a picc line and a long list of 3x daily medications and treatments. I am not allowed to sweat (it'll mess up the dressing), swim, or work until the picc comes out.

Looking back, it seems as though I have a tendency to take one step forward and two steps back in life. I get in shape, do the things I want to do, work hard, and then reality (I guess) catches up to me and I end up on the couch with tubes coming out of my arm, forbidden to leave the house (omg she might sweat!). On the one hand, I'm extremely grateful. I feel so much better (I can even do stairs!) and I know I'm fortunate that so little intense treatment "fixes" me. On the other hand though, I'm furious. I'm furious that this happened, that I may or may not be able to do the triathlon with Melissa now (I'll be fighting for that one), that my Dr. wrote a letter forbidding me to work over 8 hours a day and 40 a week, and most of all, I'm furious because I know deep down, that this was preventable (at least to a certain extent).

Basically my ability to see myself as normal is rapidly diminishing. I now have more daily treatments to do even when I'm not sick, and frankly, I'm semi-ok with that. At this point, if it'll keep me out of the hospital (which was a horrible experience btw), I'll do it. I guess my "normal" will just have to change a bit so that my entire life doesn't come to a grinding halt. Call it maturity, call it "all growed-up" call it what you want, but I've always been a path-of-least-resistance type person in most areas of my life and right now, that path is medical compliance.

I signed up for the Redman Sprint Triathlon on Sept. 20th, but I'm not allowed to start training until July 9th. So, until July 9th, I'll be here, grudgingly taking care of myself and treating my disease. :)

Because "people are beginning to ask"

According to Jessica, "people" are wondering where I am.  Even though I highly doubt that anyone read my blog consistently enough to worry about my extended leave of absence, I'm choosing to humor my friend  by updating "everyone". 

 

Last month's 5k went relatively well, all things considered. I finished the race in about 30mins, and proceeded to cough up a lung all over the curb.  It was sexy baby! Jessica did extremely well.  She accomplished her main goal (not walking) and one other time goal that I can't remember.  I was so proud of her!  She finished well, and recovered well...which was something I didn't quite manage.  It took me an hour to have enough air to speak! To sum it up, the weekend was a blast.

 

The past month has been a bit of an adventure to say the least. Let me start  by talking about my next challenge.  Jessica and I are signed up to run in the BALTO 5k this weekend in my hometown, Edmond.  BALTO stands for Bring A Light To Others.  It is the annual fundraiser my high school puts on.  Each year, a different person or organization receives 100% of the donations. This year, the recipient is Diana Caporale.  Diana has been diagnosed with auto-immune hepatitis which has caused cirrhosis of the liver. There is no cure, and eventually, she will need a liver transplant.  Diana graduated from Edmond Santa Fe High School, and her family and mine have known each other for years.  Aside from the fact that I know this year's recipient, the Edmond High Schools fundraisers (all three benefit the same recipient)  are an amazing way to get high school kids involved in the lives of others.  My Dad, sister, Jessica, and I are all running together next Saturday, so naturally, I'm pumped. 

 

On a personal note, the past month has been one of the more frustrating months I've experienced lately.  I'll spare you the details, but suffice it to say that because of an ungodly and unnecessary amount of red tape, I am still without the medicines that my doctors call my "lifeline".   I personally despise calling any drug my "lifeline" however, having been without them for 4 months (I'm supposed to have them every day) I can safely say that I am miserable. I really hope I get them soon.  My training will be extremely difficult without them. 

 

Ok, time for a happier paragraph.  Jessica and I have chosen our tri!  We are competing in the King Tut sprint triathlon in McKinny, Texas on April 19th.  I am so excited! We finally have a date, and when I talked to my mom, she said she'd buy me a wetsuit for my birthday! Woo hoo! I also talked to Tim, and not only is he going to come to the triathlon, he said he might run a 5k with me on Valentine's Day! Granted, he only said maybe, and only because I said that was the only thing I wanted for Valentine's...but maybe, just maybe he'll like it enough to work out and then we can fulfill my workout couple dream.  =)  As far as events go, I want to do some kind of race every month.  So far, I've got the BALTO run this month, 3 events (33 mile bike race, memorial half marathon, and triathlon) in April, and hopefully an Olympic tri and marathon (?!?!) later this year.  Jessica said she's interested in doing an event every month or so also.  It'll be good to have someone to keep me honest throughout the year. 

 

And now, my "people" , this post is entirely too long.  Yes, there is much more to say, and yes I know I have starved you the past 6 weeks,  but never fear! I shall post again!...maybe...  =)