Out with the sick...

We have a few friends coming over tonight, nothing big as I am still not feeling 100%. 2014 started off rough and is ending rough, and I am hoping this new year is different!!

January started off good, my best friend was expecting her first child and February 7th Caroline Rose was born. Also in Feb my friends Scott and Mary announced that they were having a baby and my daughter was accepted into the Art Institute of Pittsburgh! The cold brought a rough time with pain, but I got through it. April 14th I turned 37 years old, and in May my daughter attended her Senior prom. I got to spend Mothers Day with my daughter and my best friend and her daughter, we went to the Mothers day service at church. That afternoon my husband and daughter took me to the zoo! Also in June my daughter and her best friend graduated from High School and I got to spend most mornings on my porch watching the birds. My daughter turned 18 and my husband and I celebrated being married for 16 years! We got to spend another vacation in Duck, NC; we ended up going with some good friends and having a wonderful time. Mary and Scott had the baby, Seth Gary, and then in October my baby moved away. In November we lost our dog Snoop, she was a great dog and I greatly missed. Also in November I got sick and was sick through Thanksgiving. I started to get well, only to get sick with in a few days.

2015 is another year to make some GREAT memories. I hope to spend more time with my family and friends.


CFDunbar Designs put out some nice shirt designs through out 2014!

Available at https://www.teepublic.com/t-shirt/99502-shed

Available at https://www.teepublic.com/t-shirt/45247-i-am-rage

Available at http://shirt.woot.com/offers/hello-kitsune-1?ref=cnt_ctlg_dgn_0

Available at https://www.teepublic.com/t-shirt/45074-mandatory-enemies

Available at https://www.teepublic.com/t-shirt/110262-harley-nouveau

Mutants Unite, Cystic Fibosis Survey and an update!

Hello all! I'm in a pretty good mood today, despite not feeling 100%. I've been having an even harder time than usual with coughing and wheezing. Saturday is a busy day so I am keeping my fingers crossed that I feel well enough. I'm having lunch with my best friend, Jessica, and other mom's. Jess is going to have her first child and I thought it would be nice to just get together and just support her. Later that night the cemetery my Grandmother and Grand Donald are buried in is having a candle light vigil. I'd love to be able to do both so I have been trying to take it easy this week.

We had Thanksgiving at my house and my daughter cooked dinner. A friend of hers from her culinary classes came over to help, as well as an old family friend. It was a really nice dinner with two stuffed turkey breasts and a pork crown roast, for sides we had creamed greens, green bean casserole, sweet potato puree, mashed potatoes, stuffing, gravy and cranberry chutney. It was so good! Frank's parents and my parent's were here too, which just made everything better! I love spending time with the people I love, so they day was just awesome!

I got an email a few weeks ago asking me if I could use my blog to ask for CF patients who would be willing to help out the Cystic Fibrosis Foundation by answering a few questions. Specifically adults with CF. They are conducting online discussion groups and interviews with adults to learn more about what we need and how they can better serve our needs. Will you sign up to participate? Cut and paste the following link:

http://dimensions.edgeresearch.com/e.asp?p=CFF1301&S=C&ps1=c

Oh and I have to show my husbands latest tee shirt designs!! When I was first diagnosed with CF and mito we joked with my doctors about me being a mutant, maybe possibly I'd be able to join the X-Men. LOL Flash forward to this month my husband has designed tee shirts inspired by me and that discussion so long ago. I know I'm not the only one to call myself that, so I wanted to share his work! He has designed a mitochondrial mutant shirt

You can buy it on teepublic.com https://teepublic.com/show/8056-mitochondrial-mutant-in-black
or get it as a hoodie on redbubble.com at http://www.redbubble.com/people/cfdunbar/works/11166939-mitochondrial-mutant

The next shirt is inspired by cystic fibrosis

This one is also available on teepublic.com https://teepublic.com/show/8051-respiratory-mutant-in-black
or as a hoodie on redbubble.com http://www.redbubble.com/people/cfdunbar/works/11166952-respiratory-mutant?ref=work_main_nav

Later we discovered that I also had a blood clotting issue, so the next shirt is inspired it

Again this is available as a tee shirt at teepublic.com https://teepublic.com/show/8060-blood-mutant-in-black
or as a hoodie at redbubble.com http://www.redbubble.com/people/cfdunbar/works/11166972-blood-mutant


Follow my blog with Bloglovin

French Fries fix everything...until you eat too many

So a lot has been happening in the world. Family has been sick and friends are hurting, it has been a tough year so far. Through it all, a problem has been niggling in the back of my mind. I am getting worse. I have been trying to rate my pain and fatigue every day. The fatigue has stayed the same. But the pain hasn't, the past few weeks I have not been lower than a 5. I have been taking lyrica every day, and a vicodin at least once a day (usually to help me sleep).


I love my primary care doctor, I think she is wonderful.She absolutely thinks outside of the box, which is what a zebra like me needs. Some of you know the reference but for those who don't; zebra is a slang for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so "zebra" is the broader concept. It came from the saying, "When you hear hoof beats behind you, don't expect to see a zebra". http://en.wikipedia.org/wiki/Zebra_(medical)



So as I said, I need someone to think outside of the box. But I also need a specialist. So I contacted one of the doctors that discovered my mutation and wrote an article on me (http://www.ncbi.nlm.nih.gov/pubmed/12400067). I'm excited that she says she is going to see me! I can't wait! Don't get me wrong, there is no cure and I know that. Not yet anyway. But there could be a better way to treat this pain and discomfort.



In other news, our new dog is doing well. My daughter has a job in a kitchen, and loves it. My husband is doing well too, except he fell down our steps the other day. He only fell down the last 4 but he landed flat on his back. He has been sore for the past few days but he seems to be doing better. I also got to hang out with my BFF, Jessica. I have been resting and not really doing anything, but when I had the chance I hung out with her! She lives far away, I could drive to her house more often....if I could drive more often. Anyhow we went out and got french fries which are a cure all. That is until you eat to many, then they are the problem! Jessica and I lost touch for years, and a few "best friends" filled in. But they paled in comparison to Jess. I'm not saying she doesn't have flaws, but her flaws compliment my own.



All in all, I really do have a blessed life. What is illness when you have the kind of family and friends I have?

Labs from 6/30/09

So I went in for IV therapy today and got my test results from the 30th. I have to laugh now when I get them...I think my body is in a constant state of flux.

Vitamin K went from 3.6 to 3.9; up is good! lol
Morning Glucose was 82
Calcium was 8.9 which is the same as it was before. If it doesn't go down I'm happy.
AST the 23rd it was 120 and on the 30th it was 156...
Gamma GT last time was 86 and on the 30th it was 106
ALT was 110 and went down on the 30th to 103
CK has gone up from 1165 to 1690
Cholesterol has dropped again! This time I am at 73. hdl dropped to 12 and ldl is at 44
Bun/CREA 8.6
Vitamin B12 652.6
Vitamin B2 listed as repeat test needed again?
B6 dropped to 11
Vitamin C is listed at .13
Vitamin E 3.9
Apolipoprotein A1- 77

Oh they have been checking vitamin d too, but since it doesn't come back flagged I hadn't noticed it. Vitamin D 1 is 20 which the lab says is low.

Other than that everything has been going OK. I'm getting better about saying everything is fine, or good...but its been baby steps. I just never think people want to hear me whine. lol
Over the weekend we went to a good bye for now party for my best friend Jessica. Her dad is really sick and she is going to stay with him in Las Vegas. She says she isn't planning to stay...I really hope not. I lost touch with her several years ago; so even if she doesn't come back...I'm not letting that happen again.

On my way home from Iv's I heard a song that makes me think of Frank and how hard it is for him to be married to someone who is sick. It's by Rob Thomas and it's called "Her Diamonds"

http://www.youtube.com/watch?v=anlM631RsoQ