A Pain in my Shoulder!

July 16-July 8, 2014 Shoulder pain and weakness! Ugh! Life with a connective tissue disorder – EDS! I threw my shoulder out. And then another pop. Thought it would get better on its own because sometimes I can pop my shoulder back in place. But it just got worse. Finally went to chiro for adjustment. […]

Just Another Appointment, Just Another Attack

April 28, 2014 Had a doctor appointment this morning. And I thought I was doing ok, but I started to feel funny and a bit weak as I finished talking with the doctor. I checked my blood sugars and they were pretty low and I could tell that my potassium was as well. My doctor […]

Hello Again. It Has Been Awhile.

Feb. 9, 2014 Wow! It sure has been awhile…almost four months since I last updated. I guess I needed to take a little break from everything. But here I am, hello again everyone. I will try to do my best to update more often. Please forgive me if I am unable (or not well enough) […]

So They Say – Needing a Port

Jan. 13, 2012 So, when I went for my weekly fluids at my doctor office last week, I started to feel pretty bad. By the time I got to the doctor office, I was crying with every step I took, using my cane to help me stay up on my feet. I was weak, dehydrated […]

Fluids, Tests and Doctor Visits

Dec. 26, 2012 I had my gastric delayed emptying test done a few weeks ago. And I met with my GI…I lost 2 more pounds. Yikes!. So, I got my results…I have severe delayed emptying (gastroparesis). Doctor still wants to do pill cam test but says I can’t swallow it like it is normally done […]

The Good and the Bad

Oct. 30, 2012 I had my EGD scope 8 days ago. And to all of our surprise – it came back normal with no narrowing. This was a bit shocking since my upper GI suggested a narrowing. I was a bit sad when I was told the news. I know it is a good thing […]

Mitochondrial Disease Awareness

Sept. 17, 2012 If having problems involving three or more organ systems, one should look into getting tested for Mitochondrial Disease. It is Mito Awareness Week – Sept. 16-22, 2012! I have a family member who was diagnosed with Mitochondrial Disease at a young age. He is almost six years old and has had a […]


Latest Doctor Visits and Update

July 31, 2012 Last week I had a fever and really bad chills, headache, some swollen lymph nodes, a tight neck, some strange bruising that I’ve had for few months that started to spread and some pain inside of my bones – no sign of cold or flu. I was not doing well and I […]

One Year TP/AIT Follow Up

May 29, 2012 Just had my total pancreatectomy with an auto-islet transplant (TP/AIT) one year follow up study testing up at the University of Minnesota Medical Center of Fairview (UofM). Went well – A1C was 5.3. Happy dance! I was at 5.6 at six months post, so my numbers are doing really well still. I […]

Being Your Own Advocate

May 26, 2012 Being sick or recovering from a major life-changing surgery doesn’t come with an instruction manual. Advice for after care is always helpful, but when you find yourself facing a rare disease or recovering from a surgery which is not understood by many doctors, it is sometimes hard to understand what is really […]

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