Living life with multiple chronic illnesses…. and some other stuff!

Monthly Archives: March 2009

…how strangers can be so caring for someone they have never met! I must have lost faith in humanity somewhere along the road, because I am really floored by some people. I have a youtube channel about how I deal with Ehlers-Danlos and other conditions. I was floored by the amount of views I had gotten, and even more shocked with the amount of subscriptions I’ve gotten. Then one day, out of the blue, I received a beautiful email from a person telling me what he’s been through and how much he appreciated my videos. As if I wasn’t touched already, he told me that he had made a donation towards my fund for my Companion/Assistance Dog Shadow. I couldn’t believe it, I had to read it twice to make sure I had read the email correctly. I am so grateful to him, and anyone else that has given me support, in any way. It all means SO MUCH to me!!!! Thank you, Matt, and everyone else. I am so grateful to everyone!!!


I have been diagnosed with Sensory Processing Disorder. Which basically means that my brain has a hard time filtering out stimuli and those stimuli can cause a pain reaction. My nervous system gets overloaded by certain sights (bright lights, flashing lights, shiny things, etc), sounds (loud, more than one at the same time, abrasive, etc.), movements, touch & textures, a bunch of different stuff. It’s a trial and error process to find what works for me and what doesn’t in order to cope with this. I also notice more and more things that I do, to compensate for the overload as well. Right now I wear a hat most of the time, I have multiple tinted prescription glasses, earplugs, weighted blankets, and my good friend Mr. Valium.

Some dr’s believe that SPD is on the Autism Spectrum. It is likely I have Aspergers and only talked to my psychologist about it. She said it is definitely possible but would be hard to diagnose because I also have PTSD, depression and severe general and social anxiety. On the other hand, Aspergers can make a person more susceptible to PTSD if they have experienced a trauma, and are more prone to depression and social/general anxiety issues, and SPD is HIGHLY common in people with Aspergers/Autistic Spectrum Disorder. So, it’s like the “which came first? The chicken or the egg?” question.

For me, I relate to Aspergers. I’ve taken the Autism Quotient (I know it’s not diagnostic, but pretty damn accurate) and scored a 44/50 (the higher the more likely), and on the notorious “Aspie-Quiz” I scored a 163/200 which is the same as the AQ in scoring. From people I have talked to with Aspergers I’ve scored higher than they did. So that says something. My psych isn’t ruling it out, and we talked about whether it would be worth it to pursue a diagnosis and came to the conclusion that if I did get diagnosed I would most likely be sent to a social skills class (I spent 2 weeks in a day program working on social skills) and I already have more than enough reason for SSDI benefits with my physical illnesses so I don’t need an official diagnosis for that. I work on issues in therapy and find ways of coping with social issues and sensory issues.

There’s a lot of debate about whether or not Aspergers is a Disability. I believe it can be, I also believe that people with it may not see it as a disability. For me social situations can be disabling–with all the conversations going on, it’s hard to keep track of everything, should I join in or should I not? Most of the time I just sit back and watch people. With multiple conversations going, the drunks at the bar, and other people in the place, the noise becomes unbearable and my head feels like its going to explode. Other than that and a few other things, I look at it in some ways that my brain works differently. I view things differently than the general public. My interests make me happy. I’ve made it work for 26.5 years, I have friends who find my “quirks” endearing and know how to deal with it. I don’t always understand what they mean, and I am almost ALWAYS last to get a joke, but they are good friends that love me!

It’s been a while since I last posted. It’s also been a while since I’ve caught up on reading my blog subscriptions! I apologize! I don’t really have a reason other than that I am so exhausted all the time. My POTS is acting up really bad lately. I’m back to being extremely underweight from muscle loss. I’ve only been able to gain a pound back. With EDS it can be extremely hard to gain back muscle. I’m low on protein so I’m doing what I can to increase my protein intake. Lots of peanut butter, edamame, and carnation instant breakfast with soy milk.

Currently, my custom made wrist splints are cracked, so I am wearing some other braces that aren’t as good but are doing the job. Because of the muscle loss, my knee braces are way too big and doing more harm than good, I am unable to wear those. I have my hard Arizona AFOs, but I still can’t walk very well. The tendonitis in my ankle is really bad at the moment, nothing seems to be helping. I’ve had to stop physical therapy because it was hurting me. Needless to say, I am pretty much couch bound. I can’t drive, can’t walk very well, I’m extremely weak, and to top it all off the downstairs bathroom is broken!!! In the morning (or whenever I wake up) I get everything I need for the day and come downstairs. I pretty much stay on the couch, get up the few feet to go to the bathroom, or to get something to eat or drink, and then lie down for about 15-20min because of the POTS. So, we have to use the upstairs bathroom now. Good thing I don’t “go” very often (ok, maybe a little TMI, but such is life).

Next up in the world of suckitude, I was denied SSDI by the QA department after being approved by the state. Now I have an appeal going and won’t hear anything for at least 3-4months. In the meantime my boyfriend and I are living off of his salary and its barely enough for one person, let alone 2 and one being ill.