Venting

[Guest guest]

I will be having surgery to zap the tonsils on Feb 8. I have no flow behind

the cerebellum. I had decompression sgry 4/2000 and did great until

Christmas of that year. Had the flu and severe coughing ruptured the dura

patch so I also have a very small leak.

The tonsil tissue around the outside of the foramen magnum is blocking csf

flow, especially on the right side. It is herniated more than the left.

I am so sick of being sick and tired of being tired. After the 1st

surgery, I said NO MORE surgery for me, but that was before the symptoms

returned. Now, I remember why I decided to have it in the first place.

I really dread going through all that again but my quality of life is not

very good right now. I had to miss a school program week before last that

my granddaughter was in and it breaks my heart every time I think about it.

I also landed in the ER of a hospital about 30 miles from home when we were

driving back from North Carolina. I have no energy and staminia and can't

make plans to do anything special because I don't know from one day to the

next [or from AM to PM] how I will feel.

Had to turn down an invitation to go to Atlanta with a friend from my church

and take our daughters and my granddaughter to see the broadway play 'Annie'

because I may get sick and ruin everyone's plans.

Thanks for letting me whine, I feel better to get it off my chest.

Cherry

[Guest guest]

Kathy,

Vent as much as you need to!! We all do from time to time. What's great about this board is that we can get it out and know that the people here will understand and accept. It's difficult if not impossible to vent to family and friends at least not with the same freedom we feel here.

It sounds like you're struggling with just staying stable. It's got to be incredibly discouraging. One thing that's absolutely certain though Kathy is if you're smoking, please make quitting your first priority. Do it for you, you deserve your own best efforts. Ask the doctor again about rehab. He's correct in saying it won't change your diffusion or your lung function but what it does is strenthen the rest of your body so that it can make the very best use of what our lungs can provide. It helped me emotionally too. At a time when I felt like everything was beyond my control, it gave me something I could DO to help myself and that made a difference. Does that make sense?

I wish there was more I could do or say to help directly. We're here whenever you need us!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

VENTING

It amazes me as I read through the posts at how different this monster effects us.When I was diagnosied my diffusion was at 42%. For two years I was stable. I was put on prednisone and immuran,o2 before I left the hospital. I have been to so many pul.drs. I want to throw in the towel. Last year my dif. dropped to 38%. I had already been off immuram and was instructed to lower my prednisone because of oustiporosis. I kept having chronic sinus infections the whole time I was decreasing so finally Isaid screw it I am not lowering it any more. After 20 days on antibiotics I have no sinus infection. Yea" Had pft done on may 8 and diffusion is now at 28% and I am back on immuran. The drs. have never tried any other drugs or prescribed pulmuanry rehab, one of them told me it doesn't help pf patients.I have a bad addiction to tobacco and am a medicare/medicaid pt. I have never seen transplant as an option since

i have connective tissue order and truley believe even if I qualified with my ins.I wouldn't be a high priority.I am sorry this is so long but I am just so angry, the difference in my care since I went from my cobra to medicaid is night and day. I am trying very hard to get my mind back in the game. For those of you who have support systems give your loved ones a hug. I live alone and at times like this I would love to get a hug. I am going to stop my pitty party now and work on fighting this beast.We 5hall over come. thanks for listeningKathy53/dg10/ 04/In