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. […]

Just Part of the New Normal

Dec. 9, 2014 I wrote this back in Dec.: Amazing how I have been adjusting to such a new normal. One day I can feel overtaken by sickness and pain, and then come tomorrow I have already let go of how hard the day had been. On to the new. Only two weeks ago I […]

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 […]

TPN and Adjustments

Aug. 27, 2014 The last few weeks I have felt like a zombie. Sleeping hours on end, too sick to move or feel like myself, low blood sugars and severe nausea. Hubby sometimes having a hard time waking me. Covered in hives under my port dressing from adhesive allergy. Has not been easy for me […]

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, […]

Mitochondrial Disease and Memories of My Nephew

Jan. 29, 2013 This post is well over due and it has been too hard to write until now…it saddens me to say my amazing nephew, Eric – who was 5 years old – passed away a few months ago (Nov. 26, 2012) from mitochondrial disease (Mito)…a horrible disease that can cause any organ to […]

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 […]