I am so very excited. My brother called me today and he is going down to Penn tomorrow to get tested for the colon cancer gene.
I just know that he doesn't have it! I was positive I had it, and it turned out I was right. And I feel just as strongly that my brother doesn't have it. I hope I am right again.
Please keep him in your thoughts that he doesn't have the gene and will not pass it on to his 2 children.
It scares me to think he could have it too. But if he does, then he will know and he will be able to get tested each year like I do. And if he doesn't, he won't have to get a colonoscopy until he is 45 or so.
To find out more about this read my blog posts:
my-colon-cancer-screening-visit
colon cancer screening results
This 30-something's journey with Cystic Fibrosis, Lynch Syndrome, CFRD and the Lung Transplant process
Tuesday, April 27, 2010
Friday, April 23, 2010
in other news...
Not too much to update on.
I am still waiting for my SSDI claim to be fully submitted and go through.
I am still waiting for my healthcare application to be accepted and get me on MassHealth.
I am still waiting for my long term disability claim to be approved.
I am still exhausted all the time.
The last one I decided to ask my fellow CFers on the forums what they thought and a good majority of them suspect CFRD...CF related Diabetes. Coupled with my huge increase in appetite there is a good chance that may be it. Of course other signs, like dry mouth / always thirsty I have always had, and peeing a lot, which I think I pee a normal amount.
So I am going to add that to the list of tests to get down on me at my new clinic. And also fellow bloggy friend Jessi will be in Boston next weekend for Paul's memorial so she is going to check my blood sugars a few times while she is here. So that will give me a good starting off point to see if maybe I could be CFRD.
In other news...please pray for Piper that she gets a REAL call soon. She has had so many dry runs that it is getting to be ridiculous. <3 you girl!!!!
Wednesday, April 14, 2010
The headache that won't go away!
For the past few days I have had this headache that will NOT QUIT!!!!
I don't know why I have had it and I have been popping Motrin every 5 hours (3-200mgs) and it lessens it but doesn't make it go away. Sleep doesn't help, eating doesn't help, relaxing doesn't help. And since I don't have health insurance right now I can't go see a doctor until MASS Health kicks in and I am covered. And since I am coughing it doesn't help the whole headache thing either.
I've also been SUPER tired lately. I am asleep by midnight every night (give or take 30 minutes). I wake up around 6:30 when P gets up and then go back to sleep when they leave around 7. Usually I will sleep until 9, 10, 11 and sometimes noon. Today I slept till 12:30, got up did treatments, exercised, felt nauseous so I went back to bed at 1:30 and slept till 4. I will be able to fall asleep tonight again because I am so tired. I don't know why this is either. And before the whole "maybe you are pregnant" thing starts (I mentioned my increased appetite on FB and someone commented about it) I just got finished my period today (sorry guys!!) so that is NOT what this is.
I just want this all to change and go back to normal so I can resume my schedule. I feel like I am slacking on housework and cooking. Though in reality I am not haha.
I don't know why I have had it and I have been popping Motrin every 5 hours (3-200mgs) and it lessens it but doesn't make it go away. Sleep doesn't help, eating doesn't help, relaxing doesn't help. And since I don't have health insurance right now I can't go see a doctor until MASS Health kicks in and I am covered. And since I am coughing it doesn't help the whole headache thing either.
I've also been SUPER tired lately. I am asleep by midnight every night (give or take 30 minutes). I wake up around 6:30 when P gets up and then go back to sleep when they leave around 7. Usually I will sleep until 9, 10, 11 and sometimes noon. Today I slept till 12:30, got up did treatments, exercised, felt nauseous so I went back to bed at 1:30 and slept till 4. I will be able to fall asleep tonight again because I am so tired. I don't know why this is either. And before the whole "maybe you are pregnant" thing starts (I mentioned my increased appetite on FB and someone commented about it) I just got finished my period today (sorry guys!!) so that is NOT what this is.
I just want this all to change and go back to normal so I can resume my schedule. I feel like I am slacking on housework and cooking. Though in reality I am not haha.
Monday, April 12, 2010
Exercising
Today starts my first full week on track to get fit and healthy. I am starting a good diet, eating more foods that are better for me, and this will be my first full week of exercising. I am excited and I feel so much better now that I am actually working out again. It may only be for 20 minutes a day right now but it feels great! My muscles last week were KILLING me and it was the best feeling in the world! Not working out on the weekends is a nice little break for me that I am enjoying. It gives me time to relax and let the muscles recoup before the next week.
I have started a written journal and I plan on writing on Sundays about the previous week's accomplishments.
Of course last night I gorged myself on so much food I probably put on 2 lbs, but hey, it was some gooooood food haha!
Here's to being 114lbs and looking hot in my bathing suit this summer!!!!!!!
I have started a written journal and I plan on writing on Sundays about the previous week's accomplishments.
Of course last night I gorged myself on so much food I probably put on 2 lbs, but hey, it was some gooooood food haha!
Here's to being 114lbs and looking hot in my bathing suit this summer!!!!!!!
Sunday, April 4, 2010
I want...
...a baby. I know I know... We went to Church today and there were so many tiny babies there. I actually started tearing up at one point. I must be in full swing of the biological clock thing and my body is just over sensitive to it. Even thinking about babies makes me get all teary-eyed.
I hate CF
Friday, April 2, 2010
New Lungs for Piper!!!
Everyone please pray for Piper, fellow CFer and Bloggy friend. She FINALLY got her call tonight and is in the OR as I type this. She has had 4 dry runs so far and this is the real deal.
Much love and prayers for her that she wakes up tomorrow breathing like an entirely new woman! And to the donor family as they lost a loved one in all of this.
Sent from my Verizon Wireless BlackBerry
Much love and prayers for her that she wakes up tomorrow breathing like an entirely new woman! And to the donor family as they lost a loved one in all of this.
Sent from my Verizon Wireless BlackBerry
I need ALL YOUR HELP bloggy friends!!!
If my blog shows up on your blog as updated PLEASE leave me a message!!!
I think I may be having issues with this and I need some feed back.
Thanks all!
I think I may be having issues with this and I need some feed back.
Thanks all!
Thursday, April 1, 2010
Medical Terminology from my chart
so I received my medical records today to send off to Beth in TX for SSDI. I HAD to check through them and I am glad I did! I found out a lot of stuff and needed to go on the search for what exactly this crap is!
Listed below is what I found in my chart and then a website of what it is.
Enjoy learning like I did!
Hiatal Hernia
Moderately severe Obstructive Airway Disease with Hyperinflation and air trapping
Chronic Pseudomonas Aeruginosa Endobronchitis
(just thought this was funny!) http://grande.nal.usda.gov/ibids/index.php?mode2=detail&origin=ibids_references&therow=592996
Advanced Bronchiectasis
Capnocytophaga species
And the scariest one of course - benign tubulovillous adenoma
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