Thursday, June 26, 2008


So today is day 1 of home abx and let me just tell you that when my alarm went off this morning at 6 I was SO tired! I hooked myself up then quickly set my alarm to go off in 30 minutes so I could wake up and hook up my 2nd med. Once that was done I went back to sleep until my mother-in-law called and woke me up and then my mother called after that....I gave up trying to sleep and got up and did my therapy, which was good because while I am on abx my doctor wants me to do breathing treatments and my therapy vest 3-4 times a day. Today I got in four so I was happy.

After dinner Danny and I went to Target to get a gift bag and a few more things for Delaney's (our niece) birthday party Sunday. Walking around Target was a little hard on me. I am not 100% up to par yet. We are supposed to go to Universal Studios/Islands of Adventure in a couple weeks so I hope I can feel better for that.

Today my husbands best friend (the wedding he was in last week) and his new wife just started there way down to Florida tonight. They are going to be living with us for a few months until they can find a place of there own to buy. I am a little uneasy about the whole thing. Not that I don't like them..because I do its just im worried about being comfortable in my own home if I don't feel good and need my oxygen (there are VERY FEW people I will wear it in front of.) I might not need it that much now because I am feeling better but what happens in a month or two when I might not feel good again? Not to mention we have stairs in our house and sometimes when I don't feel good going up and down makes me feel winded. I know they know all about me because Danny has talked to his friend about stuff and they are good people and would never intentionally make me feel uncomfortable, its just something I am going to have to get used to.

Its just hard because I am so used to being able to keep up with everyone and do whatever I want and nobody knew anything unless I chose to tell CF was just always there and it wasn't that big of a deal, it never really interfered with day to day things and now it seems to all the time. Anyway...I know I will be ok when they get here im just worried now. I will let you know how it goes.

p.s I know that last paragraph sounded like I am feeling sorry for myself and im not really I just worry what people think and I know I shouldn't. If there really my friends it shouldn't matter if I am wearing O2 but the fact is it does bother me. Hopefully I will have my transplant soon and wearing O2 won't become a everyday thing for me!


OceanDesert said...

Hey Jen, It was NOT easy for me to get used to needing to wear O2 either. And I still don't like wearing it in public, or at all for that matter, but I just look at it as a means to be able to do what I want to do. I can walk further and go more places and generally feel better when I'm using it. Until a couple years ago when I got pretty sick, many of our friends or co-workers didn't even realize I had CF, mostly only close family and friends, so it was really an adjustment for me to go from them not knowing anything about it to me needing O2! But everyone, except a rare, few strangers has been wonderful. My only advice is, the more comfortable you are with yourself wearing it, the more comfortable people will be around you. It was amazing, as soon as I stopped giving a damn, a weight was lifted. I hope you don't have to wear O2 for long and your call comes soon! xo