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Just letting everyone know I posted a new blog. www.insidecf.blogspot.com Everyone has been asking about what I eat so I posted my food logs for the last few days. Also Im working on a big blog spot about protien so if anyone has an useful links Id love to read them. Thanks for the support...

I really wish this section of CF.com was more active. I believe we could really change the CF community with this info. Check out my blog www.insidecf.blogpsot.com and see how Im using alternative medicine and diet.

Hey guys, sorry I hadn't been around much. Busy life and I've had the flu for the last week. I'm slowly feeling better and I've managed to treat it 98% natural (ive had to take ibuprofen for muscles aches from coughing). Anyways I've had some time to give my blog a new look and some new...

Hey everyone, I haven't been on and posted in forever. I just wanted to drop in and let everyone know that I am bringing my blog back. Its going to be a look on healing CF using diet, exercise, and juicing. I am hoping to be medicine free and maintaining by the end of the year...

I applied on June 23. I had help from Beth Sufian as well. I was told on the 19th of July they had made a decision, but it had to go through a random review. I found out yesterday that I was approved for SSI!!! I am sooo happy. I should be getting my first check possibly next week. I swear...

So I have a history of diabetes associated with steriods. We found it one night as a fluke. I was having night sweats and a lady had came to get and amicasin level. I mentioned it to here and she had someone come in and check my blood sugar -It was 344. I was on metformin for a while, but once...

For those trying to get SSI, just call her. She took my case on June 17th. I applied for disability/ssi on the 23th of June. On the 19th my case had a decision!!! I know crazy. Now I don't know the decision b/c it had to go to quality review first (some random thing to keep SSI in check). But I...

www.insidecf.blogspot.com I ended up getting my compressor. A PARI vios. It works GREAT and is a little quieter. Its a pretty blue color. My doctor said I needed to see a cardiologist and have a heart monitor thing done. My PFT's were 48% PRE treatment (and thats 5 days with no treatments)...

does anyone know anything aboout how CF relates to cardiac issues? During my pregnancy I was checked often for heart issues and told they are common in CF. While I was making my PFT list and going through my medical records I noticed well over 50 notations of heart murmurs and abnormal rhythms...

I went through and was making a list of ALL my pft's. Like I went back all the way to my very first one at 10. To view it go here - <a target=_blank class=ftalternatingbarlinklarge href="http://insidecf.blogspot.com/2010/07/my-pft-history.html...

Anyone know the general rate of decline of lung function per year? For those closer to the "average age of survivial" what was your lung function in your early 20's. I am just thinking about the fact that if my lung function is 60% now, what will it be when I am 38. Will I live to 38? Would...

My kids spilt koolaide on my compressor. I have been on the phone since 10 this morning trying to find a stupid PARI compressor. I finally found WALGREENS, only to discover that through my insurance company they aren't authorized med equipment dealers -really? So I have no idea what to do. My...

Ok so in the midst of trying to figure out if my daughter has CF I am left to wonder what is normal poop? I know what normal is to me. And what its like when I take too many or not enough enzymes. My daughter seems to suffer more of a constipation issue with BRIGHT green poop. She has a...

The EFLOW is amazing. Its soo quiet I didn't even realize it was on! And it felt like just as soon as I turned it on it was done. I opened the thing to make sure there was no med left b/c I was in shock and it was totally gone. SOOO question -what other meds can be done in an eflow???

My daughter has some symptoms of CF. I've discussed tem before. She had a negative newborn screening and a negative sweat test around 6 months. HOWEVER she still has several symptoms. I am trying to get her into my CF clinic so that we can get a full genetic panel. Well they said that the...

I start cayston today. Its already noon and I am just now starting my vest. (my kids have been hell today - its take me 2 hours to get 3 nebs done). I know you have to do the cayston 3 times a day -how often to I have to space it? Can I do it at 1,5, and then 9? The tomorrow get it on a 9,3,9...

Ok so I am sure most of you have heard of Conner (www.notsobrightandshiny.blogspot.com). Here is what I don't understand -why can he not get a lung transplant??? It really pisses me off that they won't give him one. I don't care if they think his chances aren't great after getting it but how...

I was curious of many of you hire cleaning services. I feel like I either never have time to clean or never feel good enough to clean. When I get disability I am thinking about hiring a cleaning service. Do any places offer discounts for the disabled?

Ok so I go monday to apply for disability. I have applied before (5/6 years ago) and was denied, but I was healthier than. I was denied. I got a lawyer and all that but I dunno what happened to him (I didn't have to pay) and I was denied. Well I don't think I qualify for SSDI b/c I don't have...

What are the income limits to recieve SSI. I know I don't qualify for SSD b/c I don't have enough work credits. However I do meet the "health" requirements for SSI but I need to know the income limits. How much of your spouses income do they count? So they factor in child support paid? Do...