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 […]

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) […]

Living With Dysautonomia (Autonomic Dysfunction) – My Unpredictable Moments of a Disabling Chronic Illness

Oct. 21, 2013 October is Dysautonomia Awareness Month! I suffer from a disabling condition called dysautonomia (autonomic dysfunction). Dysautonomia is a group of complex conditions, which may involve the entire body and is caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body. My dysautonomia is […]

Good News

Aug. 27, 2013 Good News! Having a good day! I got my biopsy results back today from the enlarged right sided lymph node, not cancer! Yay! Very happy. The results suggest an infection, so I will be meeting with a doctor who specializes in infections soon. Hopefully we will get some answers. I did a […]