Oh Where, Oh Where could my Vitamin D be? O Where, O Where Can it Be?

Where did the Vitamin D go?

I had my quarterly CF appointment, which is usually just refered to as "Clinic". It was a great, but a weird appt. I found out my DNA Mutations. There are 44 common Mutations and I was tested for those only at this time. I found out I have two copies of the Delta F508. (for news on updates on drug research for mutations check out www.cff.org!)

Not only did I found out my mutations, but Dr. B thinks my joint/hives problem is Arthritis related to my CF, so I think that may be figured out finally!!!!

AND BEST OF ALL... I gained 5 lbs and now weigh 101 lbs! I also brought my FEV1 up to 57% from 54% and all of this in the last 3 months!

The only problem was my lack of Vitamin D, apparently Dr. B's script was for enough Vitamin D for a Cow! But after two weeks of taking this much I still had NO vitamin D in my system... Dr. B goes " where is it going?" I'm going to take the huge dose of Vitamin D again for two weeks and get retested...Hopefully it will solve itself, the mystery continues...

and in the next few weeks I will start walking/jogging regularly...we'll see how that goes/ and how long that lasts...lol

5K. I could cry. Beyond Annoyed.

My 5K I paid my registartion fee weeks ago, have been training and I'm ready for the 5K. However, I didn't get to run my 5K today. Why? Because Cystic Fibrosis decided to one up me. I got my spots back friday, and they just got worse and worse. They look like this: They take over my feet, and sometimes my calves. I posted about this a few weeks ago. I had them during the last few performances of Hairspray. I call it the "Mummy disease" because when it happens my joints freeze up and I can't move. So the morning of my 5K I wake up and they are on my thighs... and on my arms. This is the worst they have been in years. I took pictures to show Dr. B at my clinic on the 11th. I'm just really bummed and upset about my weekend! I was supposed to run my first 5K!!!!! I then had a bags tournament in Peoria for the Dream Factory, and was then going to head to Champaign for Sat night- Monday! My friend Alex, reserved me a ticket for Ren...

Calling All Who Care!

Please Read : Okay, so first off I want to say that this post is tough. It's tough to think about and write. However, it is extremely important and a huge topic in the CF Community, and is VERY NEAR AND DEAR to MY HEART! First I want to ask you... What if I told you I needed a Transplant. That I needed to reach a certain weight, get my kindeys functioning better, get a higher pain tolerance, and get off a couple medications I take right now. What if I said I couldn't receive a 2nd chance at life unless I reached these goals and I raised a certain amount of money that seems impossible to raise. What if I had been in and out of the hospital off and on for the last year, with many surgeries, had multiple infections and my lung function dropped from 40s to the teens and now is slowly dropping still. What if I was starting to wonder if my decision to go through the grueling Transplant tests was worth it. What if I start to get down about my cf and wondering why ev...

A Hospital at Home

Coming home from the hospital takes a balance..... Wait.... Did I just say home from the hospital??? That's right! I get to leave Wednesday the 18th, after 8 days in the hospital. It was a logistical thing. I have a super important court date on for "Shoes (our AMAZING foster son) soon." So Doc knew before he admitted me that I would be leaving by that day... So what does this mean for me and my health??? Well, I need to make sure I continue the same treatment schedule I would in the hospital. So 4 sets of nebs a day. 8am, noon, 4pm, 8pm. Which means I finish my course of IVs at home. I will be on IV's at least until 27th (so 1.5 weeks left). I came into the hospital on Tuesday the 10th, but we didn't realize until Friday the 13th that my Psuedomonas is resistant to all of the antibiotic options for IVs except one med. So on the 13th we switched to Avycaz, which is a newer, hard hitting antibiotic that was brought to market less than 3 years ago. We were hoping I...

Cheriz: My life with Cystic Fibrosis

Search This Blog