CFRD Appointment

So I had my appointment on Wednesday and it went fairly well. No radical changes to my diet other than continuing to watch my sugar intake... trying to balance what I eat. I monitor about 3 times or so a day, and I send in the results in 2 weeks, then see where we go from there. Mostly a waiting and watching game.

In other news, I'm already halfway to my goal on my CF walk!

Hero of the Day and CFRD

So I've really started to kick it up on the fundraising side for my CF walk. Part of my campaign was to see if I could get a bunch of small donations from a shopping site that I'm a member of, Jellyfish. JF is a site that auctions off one item at a time, with the price going down, until someone buys it. There also is a chat component where people talk while the price ticks down. I started to use the chat to share my story, this site, and the link to donate to my CF walk. I quickly had numerous donations rolling in and I was touched. Today I was nominated for Smack Hero, which is ceremonial by nature, but also gets the word of CF awareness out there which is something that is deeply meaningful and touching to me.

On the health front, I've started my path down the road of dealing with my CFRD (CF-related diabetes). I've always known that I was at high risk for CFRD. The older us CF patients get, the more our risk goes up at developing diabetes. This is mainly because with the CF affecting the pancreas, it slowly slows down, and decreases it's production of insulin. I've ran some high blood sugars for years, but finally at my last fasting glucose test it was determined that while I do not fully have CFRD yet, I am glucose intolerant, meaning my body does not process blood sugar as quickly as needed.

I had my first appointment with the endocrine team at OHSU on Wednesday. Right now they are still formulating a plan of action. I'll be going back up to OHSU on Wednesday, where I'll be meeting with the diabetes educator. They will most likely have more diet changes for me besides cutting out Pepsi which I have been fairly successful at. I'll also be getting a meter, which I'll probably have to use intensely for 6 weeks. We'll be working on determining if I can control my CFRD through diet, if I need pills to stimulate insulin production, or if I need to go all the way to shots. I'm not looking forward to doing the monitoring, but I don't have a choice, so I'll have to accept it and move on. Something that I'm fairly used to at this point. I just hate not knowing the exact plan. That's my main complaint with CF. I never know when the next major infection is going to be... I don't know when or if I'll get a transplant... and it bothers me. I'm fine with what the results are going to be, but I just want to know....

Clinic

Today's clinics went exceptionally well... best clinic that I've had in years.

My weight was up about 5 lbs. I was 110 on the nose, been a long time since I've seen that number on their scales.

My lung function was the best it has been in 2 years.

My sinuses may or may not need surgery. We're going to try a course of steroids to cut down my inflammation and pain. If I need surgery, then I need it... I've been lucky to avoid it this long.

I have to set an appointment with the diabetes educator and start monitoring my sugars... joy of joy. Then a few weeks after that go to an endocrinologist (diabetes doctor). More trips to Portland for me!

The drive home was scary! Snowy most of the way, but it started sticking my last 30 miles or so home. People were driving crazy like, I couldn't see, and I REALLY NEEDED TO PEE. All of this made a very stressed Talana who took a nap as soon as she got home.

I'm very happy over how my clinics went :)

Day One

So last night... I drank the last pepsi in the house.



So I'm quitting a several year addiction. As much as Pepsi was not good for my pancreas, for my teeth... they try to pack as many calories on to us CF kids as possible. Now I get to find them in other places.

I have a rip-roaring headache today. I know some if it is my sinuses acting up... another CF related issue. I'll be going for a consult with my sinus doctor and probably setting up surgery on the 30th. I also get to see the CF doctors on that day. Combining both days into one as it is a two hour drive up to Portland, the closest CF center.

Thanks for all the visitors. It excites me to watch the little dots appear on my map. I've always been fascinated by geography and places. I spend a lot of time looking at maps. Have since I was little, so watching the dots appear makes that side of me happy. It also gives me a feeling of support.

May post again later tonight... probably another chapter in my history.

The day the Pepsi died

Well....

I'm not "diabetic". My fasting blood sugar is normal. However my 2 hour level after the sugar drink is high... meaning I'm "glucose intolerant". One step away from diabetic. Basically my pancreas is lazy. It will process sugar, but I stay at a high level for awhile, putting a lot of strain on my body. So I get to cut out my love... Pepsi. I can switch to diet, but ooooo my Pepsi. While I don't have to switch to a full diabetic diet, I do have to be more careful. May start monitoring my sugars as well... the doctor team is going to talk that over. It probably has a lot to explain for why I have had such trouble gaining weight.

I'm just mad right now.