Sunday, December 13, 2009

Freakin Out Here......

I'm kinda nervous. I guess I always get that way when I have a clinic visit (yeah I have to go tomorrow). There's the 2.5-3 hours trip (depending on traffic), then I'm afraid I'm gonna catch something on the way up to the clinic, I mean most germs are in doc offices, and I'm always afraid I'm gonna be sick even when I feel fine. I know this may sound crazy but I have had a couple of times that I was pretty sick but I had no clue till I did pfts. This time however I'm a little more gunky than usual. I'm coughing more and there's a lot coming up (not good) although for the most part it is pretty light so I'm hoping that it's nothing that cipro cant handle. But what if it's not......

I know for most cfers hospital isn't fun but they've been a few times and a lot have described it to me as "no big deal". But since I've never been (and a nervous person to begin with) I guess I'm a little freaked. Up until here recently I didn't know what a PICC was. I thought you got an IV in the bend of your arm (already ouch) but reading Ronnies blog apparently it's a giant long hose thingy that "goes to your heart" ummmm that sounds pretty scary to me but I guess I can handle it. I mean I went thru the majority of childbirth unmedicated so...

But recently reading the cystic fibrosis forums my biggest fear is catching some "mean" resistant strain of bacteria. I don't know if this happens alot but it scares me. The fact that I have pseudomas scares me enough. I have 2 types of pseudomonas both are very sensitive to antibiotics, but if I have those that means I can "catch" others!!! I've heard from my entire cf team that I need to "stay away from the internet" because not everyones horror story will happen to me. I guess the majority of my life I have been "protected" from the horrors of cf. Now it's just all hitting me at once! I mean I know it's good to educate myself because the horrors will be my future, hopefully not the near future but to be completely honest it scares the hell outta me! Everytime I go to clinic my blood pressure is crazy high. They have to recheck it again after pfts and the docs tell me I'm ok, then it's normal... the nurse called it "white coat syndrome" (is it really called that?).

I know it's been awhile since I've posted. But I kinda feel like a wuss when I don't feel the best. I like to rant and rave about not feeling good and freak out, so I didn't post because of that. I mean I have no reason to complain and I know that. It's sad but I feel like I don't fit in with normal ppl because nobody wants to put out there cig to be around me, and I'm such a germaphobe with the purell and all that it totally freaks ppl out. But then I feel like I don't fit in with cfers either. Because I haven't been through a lot and can't relate. A lot of it is that I can't open up because then I feel like a wuss. I've never had issues gaining weight, I complain about being too fat (yeah I've gained more weight :( ) and I've never had a bleeding episode (God that just sounds scary). I've never had to wear oxygen (ever) or as some refer to it as a "leash". I've never had any type of surgery except having my wisdom teeth cut out. Never been hospitalized and had to deal with attempt after attempt to get a picc (I mean that has to hurt) Until recently I didn't even know what a darn port was! Don't get me wrong I'm so thankful that I have (as my team calls it) "healthy cf" but sometimes I feel like I can't bond with cfers because other than complaining about the hours of treatments I do and when my enzymes get messed up at the pharmacy and i end up going way too much (not fun) I really have nothing to compare.

We have lost so many cfers. I didn't know any of them. I never spoke to them. I've just seen on friends facebook pages. I feel so bad, I cried even. It's just not fair! Even though I didn't know them I almost feel "guilty" for being healthy. But I do know there are cfers out there that are a lot healthier than me and that's awesome! But it's sad I was speaking to one of my family members the other day about how many have lost their battle in the last month or so and she was like "we all have to go sometime" it was almost like she didn't care! I just don't understand I thought she would have a heart for cfers since I'm family and I have it. It really hurt me.

I guess I kinda get a little crazy once every three months when I have to go to clinic. Coughing up junk is not fun. There's no blood or anything, no fever, and I have normal energy level so I guess I won't really know anything until tomorrow, I'll post and let everyone know how it went.

I'm sorry for freaking out on everyone. I guess I don't handle cf as well as most.
Hope everyone is doing well


  1. I think everything you mention here is perfectly normal (well except maybe the high blood pressure! ;)). I have definitely felt a lot of those things too, don't worry!!! CF is so different for every individual that I think sometimes it can be a little frustrating. I definitely go through that all the time - like, it could be SO much worse, and yet here I am struggling with my situation... even though compared to many I'm incredibly well off. One thing I am learning is that it's okay to struggle sometimes. Even "mild" CF is difficult, physically and mentally. Even just the uncertainty of knowing that at any moment things could go down is very exhausting, I think. All the things you mention are totally valid... you don't have to feel bad about them. Feeling bad is crappy. ;) Nobody likes to feel gross!!!

    Good luck with your clinic visit. During cold & flu season, I often ask for a mask to wear in the waiting room... makes me feel a LITTLE more protected from the germs, anyway.

  2. That's EXACTLY how I feel! I just know things are gonna get worse! It has to at some point and waiting for it to happen sucks! Being in the middle of it happening would suck even more. I've never had high blood pressure it's always been good like 115-120 over 60-70 but it skyrockets when I go to clinic. Or it has the last few times anyway. And it doesn't help that my nerves always seem to make me feel like I'm sick. I start over reacting and I feel sick so that's why I don't know if I am or not. I'm always thinking "is this the time, am I gonna be in the hospital this time?" It just scares me, I guess since I've never been it would just in my mind mean that I'm getting worse.

  3. Well, I don't have CF but I do have a chronic medical condition so I know what living with one is like...even if I can't relate to you on a CF level. I don't have any "words of wisdom" but I did want to let you know that you can contact me whenever you need to talk (my info is on Facebook). Just try to take a deep breath and I'll be thinking of you during your clinic visit. Looking forward to another update! :)

  4. I've learned more about CF in the past couple months than I did in the entire 22 years leading up to now. So I can relate to the shock you've felt in reading some of the "horror stories".
    I had to laugh when I read your paragraph about the PICC. I'd never had one until this last hospitalization. I thought it sounded absolutely terrifying!!! When I was younger I always opted for the regular IV's and since my veins tend to get worn out pretty quickly I had to get a new one every other day. The PICC was MUCH easier! Even though they had to try 4 times before it was successful, they numb you up pretty good so it wasn't bad at all. :)
    I'm also a born worrier. I don't know what I'd do with my time if it wasn't spent worrying. And I work with the public on a daily basis so I'm a freak about the purell hand sanitizer too!
    And (sorry this is getting SO long!) one of my nurses when I was in a few weeks ago made a good point. Sometimes it's good to stay in the hospital just to get a "tune up". It's easier to go every now and then to maintan your health instead of waiting until you're almost on your death bed to go in. It's easier to maintain it than it is to get it back once it's lost--just a thought. (I'm guilty of this-big time!)
    Best of luck at your appointment!!! Let us know how it goes!

  5. I just read your post again, and there was something else I wanted to say... as if my last comment wasn't long enough!
    You said that a lot of people describe being in the hospital as "no big deal". But let me tell you, I think it's HUGE deal. As you can tell from my posts at the time I did NOT handle it well. So if you're a "wuss" I am too! I just recently started opening up about CF (I think the first time I wrote about it was just last month) but it's been VERY theraputic for me.
    Okay, I think I'm done now. Sorry for the novel. :)