Thankful Thursday (Sunday)

Obviously it's Thursday but had a few family issues we were taking care of. I did write them down to post when I got the chance. I'm thankful for:
•The opportunity to spend more time with my family. I'm no longer working which makes it a little harder financially but it gives me more time to take care of my health while being with family and possibly living longer which means even more time with the family.
•Beth Sufian and Associates for helping me apply for SSDI. Its not easy going through with this process and it helps to have legal help.

Update on Disability

    I have been out of work for over a month and applying for disability through my employer and SSDI, as stated in a previous post. Well I was finally approved for the disability through my employer. I'm not sure if this is how this works but they approved it through August 11th which is my next clinic visit and at that time my Dr will have to fill out a form and send medical records to continue.
     The reason that the claim took so long was the case manager that was handling my case is either on leave herself or no longer employed there and I guess it happend right when I filed my claim so nothing was done for the first 3 weeks. Finally someone else took over my claim and I believe she only took a couple days to approve it because I would call her more than once a day to either make sure she recieved the info needed, to find out what other info is needed, see if claim was approved, and make sure the ck was being sent.
     I truly worked hard for my money..LOL..Now just have to wait for the USPS..

Something off My Chest

     Most of the people that see me, whether friends, people at the store, or even some family have no idea what has to be done on a daily basis to try to maintain or prolong any decrease in my health. When someone looks at me they have no idea that 9 times out of 10 I'm running on half the lungs they are and that my body is fighting off infections all the time.
     Although I am happy to say I don't "look sick" (as is the case for most people with CF, Bronchiectasis, and some other life threatening diseases) sometimes it makes people not believe me when I say I don't feel good or when I ask for some help because it's much harder for me to do certain things.
     The last time I was in the hospital I got upset because I feel like my dad doesn't take this serious. I cant fully blame him because I was diagnosed with CF at 12 and wasn't hospitalized till I was 20 and at that time I was already living on my own. He never got to see all the struggles that most CF parents do. Now with my lung function at 44% and being scared I thaught that he would have been there for me. I know that I am an adult and that he has other things to worry about including my 7 year old brother but I am his daughter. Even though he did come to visit me a few times he doesn't really focus on me and when I talk I feel like I'm talking to a brick wall. I am not over the situation completely cause sometimes I feel like he doesn't really care. It's hard to discuss with him cause he's always "so busy".
     Now that I got to vent, Dad if you read this sorry but hopefully you will understand how I feel.

My Full Time Job is My Health

     So I just recently stopped working because my lung functions have been declining through the years. After 1 week in the hospital and 3 weeks on IV antibiotics my FEV1 % predicted only went up 2 %. This has never happened to me before. Usually after IV's I go up at least 15%. It scared the crap put of me. At my post hospital stay clinic visit I discussed stopping work and going on disability with my Dr and she agreed that it needed to be done. When having a full time job I was not able to take care of myself the way I need to and get all my treatments in.

     When I decided to stop working I just knew I had a plan to receive disability benefits through my employer and apply for SSDI. I thaught I would start getting paid after the 2 week waiting period from my disability benefits from work and even though it would be tight I would be getting something and could do side cash jobs. Now here I am receiving nothing at all. Every time I have went out on disability from work I had no problem getting started but this time they are waiting on medical records and the case is still pending.

     In the meantime I am also applying for SSDI. I know and have heard all the horror stories of the wait and thaught I was prepared. Before I started this "great journey" I did my research and know that I qualify because of my FEV1 % and because I culture pseudomonas aeruginosa (a bacteria that settles in the mucus in the lungs and causes respiratory infections). There is a 5 month waiting period to start recieving benefits but it can take even longer to finally get approved. I am working with Beth Sufian on my case. Beth is an attn that manages the CF hotline and represents CF patients with insurance matters, disability claims, social security claims, and matters related to access of health care while also dealing with CF herself. Also its sponsored  by the CF foundation.

   Although times are hard financially I know that I made the right decision. I have been doing my treatments as prescribed, exercising, getting more sleep, and being able to spend time with my family. When your gone you can't take anything with you so if this results in living longer then its well worth the struggle.

    I will keep everyone posted on my wait and I'm hoping and praying that everything will work out.

Gaining Weight

    Although most people want to lose weight and try everything possible not to gain weight, most people with CF want and need the complete opposite. Our bodies produce thick mucus that prevents the normal absorption of key nutrients and fat in the intestines, leading to poor digestion, slow growth, and difficulty gaining weight.

    My last hospital on April 27th I weighed 110 lbs and have pretty much been at this same weight for 5 years. June 9th I went for my follow up apt at the CF clinic and weighed 126 lbs. I gained a whole 16 lbs. I was so happy because I have been trying to gain weight for so long.

    How did I do it: well before my hospitalization my blood sugars were out of control due to my CF related diabetes. After a few days of my sugars being of the charts (literally) the doctors came up with a proper insulin regimine to get them back in control. Not sure why no one was ever able to give me this informatin before but I found out that when your sugars are out of control you pee alot and actually peeing all your calories out. No calories=no weight gain. I've always ate alot and never understood where it all went, now I know it all went down the toilet.

    Now the hard part is to keep it up and at least stay where I'm at.

Thankful Thursday

I got this from http://runsickboyrun.blogspot.com/ every Thursday he writes things he is thankful for and sometimes we forget to be thankful for the things we do have, so I have adopted this as well. So here it is:

1. Air condition- 13 straight days of over 100 degree temp
2. My son Cameron for keeping me on my toes
3. My boyfriend Antonio that is here for me and all my BAGGAGE..lol
4. Opportunity to tell my story

My First Blog

So this is my first blog. I'm very excited to tell my story and express myself. I just recently joined CysticLife and have been reading peoples stories of the ups and downs of fighting to beat Cystic Fibrosis. I have never had anyone to relate to because I've never really met or talked with anyone with CF. Even though I've battled this my whole life I am still learning so much. I just recently stopped working (after 9 years) to focus on my health. I'm hoping for a cure and it just seems sooooo close. Its a stuggle mentally, emotionally, physically, and financially but I believe God gives you only what you can handle so I translate that into me being a "STRONG WOMEN"  lol..yay me!!