Friday, August 13, 2010

It's Been Awhile......

I have meant to write this blog for months now, there's just been too much going on. For months I had been in a constant state of depression, cf wasn't behaving, and well lots of other issues that I don't really feel comfortable discussing on my blog.

As long as I am being halfway compliant with my meds I don't get sick and need antibiotics (or if I catch a cold). I usually get sick once every year to a year and a half and Cipro has always taken care of it. But so far in 2010 I have been on antibiotics 3 times from February to June! Which is a lot for me! I was completely compliant each time I got sick. So with everything else that's going on and cf making me feel helpless I've been a total wreck. This last time I was on Avelox and I could actually tell a difference, but maybe not enough that I feel great!

But my sinus' are infected and a mess and they don't seem to be getting any better and i'm pretty sure that's what is infecting my lungs. I have a ct scan scheduled for the 13th of next month (which is my first one ever). Honestly I feel like I'm long overdue for a surgery and some IVs. That's really hard for me to think about because I've never Had to have IVs and I guess I feel like that would mean that I'm getting worse and makes me wonder would it be that I'd have to start going to the hospital all the time? I guess if I had grown up going in from time to time I'd be used to it and it wouldn't be a big deal. But i've spent 24 years healthy and never really had any issues as long as I took care of myself.

Because of everything that's going on and me worried about my health I have started having anxiety attacks. I had no idea what was wrong with me but all I could think was I was suffocating. I thought it was my cf... who knew your mind could cause something like that? It just so happened that clinic called me back in the middle of one of these anxiety attacks and I think they thought I was crazy because for the next few days afterwards someone from clinic called me everyday to see if everything was ok and if I needed to talk about it.

And here's another thing........ this is one of the things I've been stressing about.... It's really hard for me because I don't want to seem greedy, but I want another baby!!!! I know I have a healthy baby girl and a lot of cfers Never get that, and I know I should be happy but I can't help it! I see her playing alone and I keep thinking that I don't want her to be alone. I want her to have someone, I mean I can't live forever (obviously) And maybe I want another one for myself too.

In fact I apparently wanted one so bad that I went through a phantom pregnancy for 4 whole months!!! I felt something kicking me all the time. I know that sounds crazy and it had to be gas but I had never felt gas like that, and it was just like when Lily was in my belly. I mean I could see my tummy move. But it wasn't just that. I had a few other pregnancy symptoms including leaky nipples, yeah it was weird. I had like 20 negative pregnancy tests but I couldn't convince myself. Luckily I didn't tell that many people (because I knew at the time I was losing my mind). I kept reasoning with myself and then I'd have the symptoms again and I would go back into this state of knowing it wasn't possible but couldn't stop believing it.

I know I sound completely nuts right now but I'm pretty sure it had something to do with the birth control I was on (Mirena IUD). I met other women on some health forums with the mirena and having the same "movements" and all the other symptoms and they had negative tests as well. I swear from the minute I got the Mirena, I just didn't feel "right". I had all kinds of "wonderful symptoms" that I won't go into on here but one in particular was it made me crazy. I was an emotional wreck.

Oh or the fact that I gained 30 pounds on top of my healthy weight! I'm 160 pounds right now! I know being a cfer I should be happy with weight gain but I would've been ok with 10 pounds but 30 is freaking crazy. And it doesn't help my stupid cf lungs have to carry all this extra weight around! I feel like a cow and well feeling disgusting doesn't really help this whole depression thing either..... Especially when my doctor tells me he doesn't "necessarily" want me to lose any but to not gain anymore and I needed to get into shape and gain more muscle. He was actually really nice about it, I mean it's not something I didn't already know. I just never thought I'd hear a doc say that to a cfer. The weird thing is I'm not all super hungry like i used to be and I don't eat that much.

So if any of you Cfers out there know any "healthy" diets let me know! Because I want to be smart and not get sick.


  1. Misha, I'm sorry to hear that you've been struggling so much. I've also heard some questionable things about Mirena. As far as a "diet", I'm wondering if you are into natural supplements. I feel like some of the things I take have really helped my overall health.

  2. Misha, Let me start by saying you are not alone in this. I have CF too and it looks like we have a lot in common. I went on IVs for the first time this year. I am 32. It was so hard, I felt like it defined from being healthy to not healthy. The IVs really helped more than I could imagine. Before that, I went on Cipro a few times a year, mostly when I would catch a cold.

    I also seem to gain weight easily. I can totally relate to feeling gross and disgusting. I changed my eating habits. Mostly I cut out junky snack foods and exchanged them for high protein snacks. Hard boiled eggs, nuts, cheese. I found eating these types of snack are more filling. I was able to loose the extra weight and starting feeling better about myself. I am still at a healthy weight.

    I know I have found a lot of comfort in talking with other CFer. Its helpful to talk with those who understand. Stay strong.


  3. Misha,

    I am so sorry you've been feeling so depressed lately. It is really hard to deal when you have so many things on your mind. We all go through things and feel overwhelmed, sad, and even a little crazy too. HUGS!!

    I too, had a very very hard time getting IV's and a hospitalization for the first time last year at age 29. I started to freak out a little bit and get mega anxiety over my health. Truth be told, I had pneumonia, and the IV's did me a world of good and I've been lucky to have an increase in my FEV1 over the last year with no additional help of medications. Maybe my body was just telling me that it's OK to have IV's and for me it certainly hasn't meant the scary stuff. It was a matter of realizing that just because I may need IV's it doesn't mean my health is taking a turn, not at all.

    It's hard to go through the "firsts" but it doesn't have to mean it's bad, just a first. We're all here for you!!

  4. Thanks guys!
    And Jess I feel like IVs would be best but I can't seem to convince my doctor of that. I went from (fev1) 82 then 79 then 77 and last visit 3 months ago was 78 which he doesn't view as a big deal especially since I sound 100% clear, but I don't wanna lose any lung function! I was trying to raise it back up!!! But still scares me to death to think about gettin a huge picc line and being in hospital and exposed to really bad things, I think that's why my doc doesn't think I need to... Idk...

  5. Aww I'm sorry your doctor isn't listening to you :( I totally understand being afraid of catching things in the hospital. Maybe you could just do IV's at home (if your doctor approved)? Just a thought that way you wouldn't be exposed to hospital bugs. I hope it all works out for you. :)

  6. If you're nervous about getting the actual picc placed you can ask for conscious sedation, they just give you some versed (it has this great amnesia affect) they usually will put them in Interventional Radiology if you get sedation. Honestly I wouldn't be able to have it done any other way, I"m such an anxiety filled worry wart.

    And if you feel like you need a 'tune up' complete with IV antibiotics, then fight for it girl. If you really don't get sick that often, but you feel generally more run down than usual (the cipro 3x when normally you wouldn't even need it....) then you probably need a tune up. Even if you sound "Perfectly clear". I ALWAYS sound perfectly clear, even when I'm sick sick sick and in the hospital! So that doesn't necessarily mean anything. If you feel like you need it, then fight for it, you know your body best.