Update – A Decline

Aug. 13, 2014 Sadly, I have hit a decline in my health. Have been very tired and weak the past few weeks. Dealing with starvation pain and muscle wasting in my legs. Very low energy levels. Low food/liquid intake, been vomiting and dehydrated. Saw dr yesterday and he said I am clearly very ill and […]

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. […]

Good Thoughts, Smiles, Family and Friends

April 11, 2013 I feel like I have been a bit busy lately. I’ve been trying to balance rest, doctor visits and the most important thing…life and living. I’m sorry I haven’t been online much lately. I had to take a break. But I did want to give a quick update. I’ve been getting weekly […]

My Power Port

Feb. 28, 2013 Well, I’m about 3 weeks out from getting my Power Port. I’ve been to the ER twice for dehydration since having it and they were too afraid to use it yet. But I was able to get it flushed last week and the blood return was good and the nurse said that […]

Eventful Appointment

Jan. 25, 2012 So, I had my appointment with the Autonomic Heart Specialist yesterday. I had some special testing done and met with the doctor. He spent over an hour talking with me and my dad. He was full of knowledge and the day was very eventful. He would like for me to see a […]

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 […]

Eventful Follow Up

Dec. 4, 2012 So had my 18 month Total Pancreatectomy and Auto-Islet Transplant follow up last week. It was an eventful few days and my doctors had a lot of good information for me. I lost a few more pounds when I showed up. I don’t have much more to lose…down about 8 pounds of […]

Hospital – Back Again

Nov. 18, 2012 I was admitted to the hospital Friday, Nov. 9 with vomiting, pain, low grade fever and a high white blood cell count of 21,000. My CT scan showed inflamed small bowels and colitis. Three days ago we were trying to get me out of the hospital by switching my pain medication to […]

Recovery, Home Sweet Home

Oct. 22, 2012 My last day in the hospital I was in good spirits and more than ready to go home. And now I’ve been home from the hospital for about a week recovering from my last surgery (adhesions/twisted colon). What should have been a simple 5-7 day hospital stay turned into 18 days. I […]