This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Monday, July 17, 2017

The Realities of Living With Serious Disease

There are so many diseases and conditions that most of us have never heard of and know nothing about.  That, and the fact that for many of the disorders that we HAVE heard of we have only heard misconceptions and outdated information.  This can make it especially confusing when we find yourselves with one of these diagnoses; it means that our context and framework for trying to make sense of this new diagnosis is either not there at all or distorted.  We may feel alone, confused, isolated, unable to relate to anyone else.  This can slow down the process of getting treatment and can cause more emotional duress than would otherwise occur.  The videos that I am posting below are often directed at raising awareness among people NOT affected by the disease, which is another important goal, but personally I found it to be extremely important to hear about the daily lives and experiences of others who share my diagnoses.  It allows me to create a sort of "new normal" and helps me adapt to my new reality.  This doesn't mean that I give up fighting, or that I accept this reality as permanent, but without a solid place to start it's hard to know where to go and whether what I'm doing is helping.

So on that note I am presenting below videos that have been posted by people with a wide variety of conditions that tell us and show us what daily life is like for them, what challenges they face, what treatment might be life, or any other details of living with that condition.  These people are allowing us to see a vulnerable side of their lives that can be very hard to share so I am deeply grateful for people willing to do this.  Being able to "meet" other people who share my issues and struggles has helped me so much in figuring out "where I am" in life and have given me ideas about where I might go.

General and Miscellaneous:
Adjusting to life after a long hospital stay and being on TPN

This is a humorous video about being on a feeding tube (NG)

Lessons learned after one year of a feeding tube

Why Am I so Skinny?  (Woman with Gastroparesis talks about invisible illness and people being rude)

Things I didn't think about until I was in a wheelchair!

My Bronchiectasis Journey with Raihana's Cuisines

'In six days I'll lose my voice forever' - BBC News

An account of what hospital treatment (or lack thereof) is often like for people with rare and/or complex medical conditions.

We Told The Kids I'm Dying :(

Mast Cell Diseases and Other Atopic/Allergic Diseases:
STRUCK BY MAST CELL ACTIVATION SYNDROME, JENNIFER CREDITS M HEALTH EXPERT WITH SAVING HER LIFE

Unmasking Mast Cell Disease: An Interview With a Fighter and Survivor

Utah Teen Discovers He's Allergic to Food: 'I Remember What it Tastes Like, That Will Have to Be Enough'
 



This episode of the TV show Mystery Diagnosis is about a teen with EDS and goes into more detail about the process of getting diagnosed.  It also follows her through testing, diagnosis, and treatment.

My experience of Marfan Syndrome

PTSD and C-PTSD (Complex PTSD): What C-PTSD really looks like - the invisible disability


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