I am a 37 year old, stay at home Mom with CF. This year so far has been horrible for me. I have encountered many obstacles that are not my normal problems & I had to admit for the first time in my life that I am tired of being the "strong" one. No matter what happens in life, I am the one that keeps things together & right now I want to be taken care of. I am not "giving up", I just don't want to have to worry about worrying others or upsetting them if I tell how I feel (physically/mentally). I just want an easy solution to life's complications. The only one I will protect from this as much as possible is my 7 year old daughter. She already knows in her heart that things are not good & she voices her concerns. I don't want to compound that with my emotions. It has been a few years since I have been on a CF site. I guess I thought I was back to being "different" from other CF patients & didn't need the support of those living it. I was wrong & I am back. For those who might remember me from the past, Hello.....For those I am meeting for the first time, Hello. Thanks for letting me just vent.
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- Thread starter JazzysMom
- Start date
Mainly the closing down of my airways. I was admitted in 3/2005 for pneumonia & came home on IV antiobiotics for 2 weeks. During my time home, my airways started feeling tight & we (doctor, husband, me etc) thought it was allergies because weather had warmed up etc. I went back on Advair & Flonase. Within the week I was even tighter so the doctor put me on Pulmicort & scheduled a checkup for the following me. Within that last week I gasped for air. I couldnt get enough air at one time to talk, drink a glass of water or go to the bathroom easily. When I got to my appointment (which is in New York City & I drove to), they through me on oxygen & rushed me over to be admitted. Everyone was amazed that I could function at all. I tend to adapt somehow. Not that it was a benefit to me, but I breath different or move different or do what I have to do to survive more or less. So anyway I was back in for 3 weeks & came back home on IV, oral steroids etc. My airways are much better because I can actually breath & the infection that started while my airways were closed is better. However; my PFT still suck & we dont know how long or if it will change. I have had a very healthy life & CF didnt "invade" my home life to much so all of this is devistating to me. This morning my daughter asked why I cant go on her class trip this year (I always go) & I told her that the teacher & I decided that witht he weather & the fact that I am still on IV & not quite back to where I should be that I better not go. She just cried. I had to explain
that I was better off missing the trip than to risk going back to where I was. I think most of this is just an emotional drain. What's aggrivating is that outside of my severe weight loss, no one can tell I am sick so no one really "believes" how tough it is. Sometimes I think my husband forgets to.
that I was better off missing the trip than to risk going back to where I was. I think most of this is just an emotional drain. What's aggrivating is that outside of my severe weight loss, no one can tell I am sick so no one really "believes" how tough it is. Sometimes I think my husband forgets to.
I can relate to your situation to some degree. I was healthy with cf all my life pretty much till i got b.cepacia about 8 years ago. I can only imagine that my exhusband must think cf is a simple and mild disease because the whole 10 years we were together i barely had any "real" big cf issues. I always imagine if we ever got back together (which will never happen) he would not believe how dramatically things have changed. I now have to do treatments that i never had to do before( vest, albuterol, pulmozyme, tobi, exercise ,and iv's here and there) I used to wear perfume and use scented candles and room sprays and i simply cannot tolerate things like that at all anymore. I cough a lot, which i didnt do before. I also dont have the ability to keep going in all directions full speed all day long like i used to. Then again im not in my 20's anymore....lol. Either way i can relate to what you are saying that it is devastating to encounter new and frightening experiences that cf has to offer., when you had done so well in the past. I get so upset sometimes when things go wrong and sit and cry pleading for things to go back to "normal". I sometimeslike to think somewhere in the back of my mind that this is just a bad spell of cf and it will someday get better. I think we all have developed some kind of cope-ing manner to help us get thru. I try to take things day by day so that i dont feel too overwhelmed when things get scary. I can understand your wanting to shield your daughter somewhat from what cf does to you. I kind of try to do that with my mom. I know how upset she gets when things go bad for me, and i just wish i could take her worries away. I feel for your situation and ill keep you in my prayers .
HollyCatheryn
New member
Hey Melissa! I was SO pumped to see you on the board! I lost your email address when we got our new computer. I have been thinking about you and Jaz and Robert! Sorry to hear that things are rough right now. I think we can all relate at least a little, but it is hard when you've got a child that you have to shelter to a certain degree. I think the key for me has been to find the right people to confide in and open up to. There are people I know can't handle talking about my health and fears with. But there are people who can take it and are wonderfully supportive. The trick is to sift through and find those people for yourself. Sometimes they are family, sometimes not. Email me when you get a chance. I want to catch up! <A href="mailto:jaloughlin3@sbcglobal.net">jaloughlin3@sbcglobal.net</A>