Study drug visit, IV antibiotics, and Bone Density - OH MY!

So yesterday I headed into the city for another Vertex study drug visit. The visit consisted of PFT's, blood work, EKG, a sweat test then I was given a meal and 30 minutes later I took the Vertex pill. I've been sick for a few weeks now with this lingering cough and I'm on vacation from work for a week so my doctor and I decided to start home IV's. I'm definitely not sick enough where I need to be hospitalized. This is more of a "tune-up" I would say. So my sister accessed my port the other day and last night I began what I hope is only two weeks of IV meds. Here's to beating the change of weather and staying healthy!!

Yesterday after the study visit was over, I stayed and talked to my doctor. There are a bunch of new things that I am going to begin in hopes to improve my lung function and over all well being. For starters, I am going to start acupuncture again and make sure that I make it there every week so I can feel the full effect. I started last year - but my insurance at the time didn't cover it - and to be honest I couldn't afford what it cost plus the hassle of getting into the city every week. I did feel it helped though, so I am going to give it another go! My doctors offices are finally moving across town into a new building and she said there's an amazing gym there and a fabulous pulmonary rehab that I would probably benefit greatly from. I am going to try and schedule both acupuncture and pulmomary rehab on the same day so I can just make a day of it in the city once a week!

Next week I am finally going for a bone density scan. I regret that I haven't gone earlier because I really feel that I have some issues now. I have random bouts where my hands and feet just lock up. If I'm holding something tiny, such as a pen my hand usually drops it. Whatever this is - I want to get to the bottom of it - because it hurts like a bitch when it happens and it can really affect my career.

Oh and I ordered the new washable vest, in PINK of course! Can't wait til it's here - I'll put up some pictures!

Did I just jinx myself?

I find it rather odd that today I am on the phone with my doctor discussing my very gross, thick, green mucus when just about two weeks ago I was posting about how good I was feeling lately. I'm not superstitious by any means - but maybe I did jinx myself. My 02 levels are down again - 90% on room air and my heart beat is fast (138bpm) and my cough is, well it's productive and definitely needs some high potency medications.

I am actually on vacation from work starting tomorrow for an entire week. I guess it's good that I am going to nip this in the bud and not have to take anymore time off from work. I also feel like maybe someone is playing a trick on me. Like they knew I had a weeks vacation coming up - so instead of letting me just relax and enjoy - they had to make my lungs revolt so that I have to pay very special attention to them while on vacation.

Feeling crappy

In less than two weeks I've gone from feeling pretty decent to feeling god awful. I am trying my hardest to not let this turn into something but deep down I feel it's time for IV's once again. Oral antibiotics seem to do absolutely crap for me lately. I hate the fact that I know at certain points, when it's more than a little cold and that my secretions are getting thicker and darker that IV antibiotics are the ONLY thing that are going to make me feel better. I have been drinking so much water that I literally run to the bathroom every hour. Trying to flush whatever this is out of my system just isn't working. I added an extra 10-15 minutes of using the percussor (which I dug out of the closet, it hasn't been used in years) after my vest therapy.

As far as medicine compliance goes I have to say I am extremelyyyy vigilent. I make sure that my chest PT is done, my nebs are done and all of my pills are taken. There are however two things that I am still struggling with.

One is exercise. I hate exercising. I really do. I have read SO many blogs and articles about how exercising is the best thing for CF and yet still I am reluctant to make it my priority. I know I have to add it in and be commited - but I don't know how someone goes from having trouble walking up a flight or two of stairs to becoming a full fledged gym rat. I WANT to be that gym rat - I just don't know how to get to point A to point B.

The second thing I need to get more serious with is insulin. I take my standing dose of insulin every day but I sometimes forget to cover my carbs, especially if I am out eating and not in the comfort of my own home. I was diagnosed with CFRD when I graduated college in 2006. For the first three years I didn't have any complications. I took an oral hypoglycemic pill before meals and that maintained my blood sugars at regular levels. The last year however it's gotten worse. For the first time in my entire CF life I had trouble with my weight. I lost about 15 pounds in a short amount of time. I was started on insulin and was very good with it at first. I even bought a journal where you wrote down your sugars in the morning, before meals, 2 hours post meals, before exercise and before bed. My problem now is that I feel even when I count my carbs and take the exact dose that I need 1 unit per 15g of carbs, I sometimes get really hypoglycemic after. And that my friend, is the WORST feeling ever. I get so shaky and dizzy and just feel like I have no control over my body. I absolutely HATE that feeling. I've actually talked to my doctor about this and we discussed possibly getting an insulin pump. Apparently some insurances don't cover it but luckily mine does. So I have the number of this endocrinologist and I am going to give it a shot. It's not that I want another medical device to scream, "Hey, i'm sick!" but if this pump infact does make it easier to not get those dreaded low sugars and I don't actually have to stick myself with insulin multiple times during the day - I figure why not. It can only help. If I don't like it, I can always say no thanks - I'm done. So we shall see!

Fundraiser in MY honor!

This blog is actually a little late but it is definitely something that deserves recognition. Everyone knows the past two years have been hard on me healthwise. I had to stop working for an entire year because my hospitalizations were so frequent and I just couldn't seem to stay healthy for a long enough period in between stays to actually start a full-time job again. I helped out at Erin's Isle (the restaurant I worked at since I was 14) for some extra cash - since my parents were pretty much supporting me. In that time period, I stopped work, moved out of my apartment and back home and spent most of my free time either in the hospital or at home doing IV medications. I unfortunately still had bills to pay, a car payment, student loans etc. My parents and family helped me out as much as they could - but let's face it, the economy has been tough on everyone lately. Joey decided to put together a fundraiser at Erin's Isle where all the tips that he made at the bar that night would go directly to me to help me out with my financial matters. He not only made a ton of tips but he also sold 50/50 raffles to increase profits. The night was a hugeeeee success. So many people showed up that night (I wasn't there because it was a surprise originally). The next morning Joey showed me the results of the night and I was completely floored at the generosity and the willingness of people who truly love me by the support that was given. Thanks to that night - and a little loan from my amazing boyfriend I will be officially done with paying thing off in less than 6 months. The stress that has been lifted from my shoulders is amazing. I am truly the luckiest girl in the world to have a boyfriend as amazing as Joey and a fabulous family, both mine and Joey's!

Hello Fall ..

I actually don't mind the fall weather. I LOVE brining out the UGGs again and comfy sweaters. The thing I hate is all the yucky viruses going around. It seems like everyone has sore throats, is sneezing and coughing non-stop. I am always very cautious and good with hand washing - but this time of the year I am simply OCD about it. Working in a hospital I'd have to say I wash my hands at LEAST every 5 minutes or so. That can make for very dry, yucky hands - thank goodness for hand lotion! I honeslty cannot believe it's already November. Time has flown by so fast it's crazy!

I took a week off from work next week - not to go away - but simply to relax and get my room organized. I think it's time to do a major clean up. I also want to make room for a desk so that when I start back to school I am not crouching down at this little lap desk that I now have my laptop on. For someone who's prone to bone problems later on life - it's probably not the best set up right now!

Here's to the fall and the winter - let the damage not be so bad on my lungs this year! I might just have to buy a pretty new scarf, hat and gloves to keep the cold air out of my bagpipes!