Change with the New Year

Jan.-Feb 2016 updates Jan. 16, 2016 Been a long time since last updated. Had few good weeks here and there. Really have gone down hill. Struggling with my chronic protein malnutrition. I have been having more days needing a wheelchair to get around. I am very weak and mostly bedridden. I have a cold on […]

Bone Loss and Low Vitamin D

July 1, 2015 Been having bone pain and low energy lately. I am just not able to do much most days. So I had a DXA bone density scan done (recommended to be done every other year for post TP/AIT patients). I found out I have mild-moderate osteopenia in my hips and lower spine. This […]

A Hard Month in February: Recap of Spesis and Recovery

Recap from Facebook Posts from February 2015 Written on Feb. 4, 2015 Been having a rough few weeks. Many of my conditions are in a flare up. In and out of paralysis with my arms and legs. Abdominal pain and nausea have been a bit rough today. Low sugars from not being able to eat. […]

Autumn Months – The Good and the Bad

Oct. 31, 2014 It has been too long since I gave an update. I have been doing pretty well lately and seem to be mostly stable with everything. I am still on my TPN and down to every other day. I gained all my weight back and then some. I am very pleased and it […]

A New Normal. Amazing How One Learns to Adjust.

Sept. 15, 2014 Finally! A new normal. I have been learning to cope and adjust to being on TPN and being hooked up to a tube and needle in my chest every night now. I was very worried in the beginning as I started my life on TPN. The protein and fats part of the […]

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 […]

Food: How I Miss You, How I Wish I Could Have You Every Day. Struggles of a Broken Stomach: Gastroparesis.

Aug. 1, 2014 August is the national awareness month for Gastroparesis. Gastroparesis from a patient’s point-of-view: I struggle with a condition called gastroparesis which causes the stomach to have an inability to empty properly, which can make eating and even drinking fluids limited most days and even impossible on bad days. I believe this condition is much more devastating, […]

Periodic Paralysis – Rare Disease Causing Low Potassium and Scary Symptoms

May 23, 2013 Last night I had an event in which caused paralysis to my limbs and upper body, made me unable to speak, caused my heart rate to spike, my oxygen and breathing to decline, and caused severe chest and muscle pain and nausea. I have had many of these events over the years. […]

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 […]