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Erin from the blog A Dress A Day wrote a really amazing blog post. So amazing that I have to share it with you all. As someone with a chronic illness, I’ve often felt frumpy, ugly, unattractive, etc., at least once per day. Because of living in chronic pain, comfort is a major component that goes into the decision making of what to wear. Why should we have to give up comfort to feel pretty? Why should we feel that we aren’t “pretty enough” to wear a certain dress or outfit? These are the major points of her blog post and I urge you to read it!
When I first got really sick with the EDS and all that came with it, I was still in therapy trying to recover from Anorexia. I had managed to stay at a healthy weight for a few years and felt really good about it, both mentally and physically. Healthwise, I was still struggling and trying to figure out how to go about my care. I’ve had lots of ups and downs since then, along with a lot of trial and error with different medications and some that came with some greatly unwanted side effects. The most unwanted… weight gain. First it was only 5-10lbs and ok, I could deal with that. Then I started to develop severe GI issues and slowly started cutting things out of my diet, which would make most people think that I’d lose some weight. However, when those foods consist of vegetables, most fruits, and other forms of fiber and I’m left with basically simple starches it’s easy to put on the pounds, clearly.
Last summer, I was able to get back to walking and was up to about a mile a day, then all of a sudden I was hit with a wave of fatigue that I haven’t been able to shake. Every few days I try to do some small exercises, nothing to crazy as I know my body has it’s many limits. The problem with it is that the next day I’m completely useless. It doesn’t seem to matter how much or how little I seem to do, I’m completely useless, to the point where I am literally FIGHTING to stay awake and keep my eyes open. It’s not just with exercise, last weekend N and I went out to dinner with some friends and it was about a 1.5 hour car ride each way. The next day I was seriously struggling to stay awake.
I see my metabolic doctor on wednesday and am going to ask him about ideas to help combat this fatigue issue and about seeing a nutritionist. I need to figure something out because I’ve noticed a big difference in my pain levels since putting on this extra weight. That, and I want to feel comfortable in my clothes again and feel good about myself in general.
In the past few weeks I’ve noticed a big change in me. I’ve had more energy and able to walk more. This is HUGE!!!!! I am so excited and thrilled and so very, very happy! Today, I actually made it around the block. I had done it once already with Neil by my side and was so proud of myself. Today I was working on the computer and got the nagging craving for a coffee. I’d been so reluctant to try and take a walk on my own, even with Shadow my Service Dog, at my side. I thought about it, what’s the worst that could happen? I had my phone, I had Shadow who is trained to get bark and get help should I become unresponsive, and if I felt woozy or dizzy or anything I could just sit down. That’s when I made my decision. I went. I walked. I got my coffee. It was glorious, and freeing, and so liberating!
So, what is the reasoning behind this new found energy? Well, a few months ago a friend of mine educated me about Mitochondrial Diseases and how I seemed to fit the criteria. I read up on it and turns out, I really do fit the criteria! On one of the websites, The United Mitochondrial Disease Foundation, there is a section entitled “Ask The Mito Doc” where people can post questions to Mitochondrial Disease specialists. On this page, a doctor basically said that if a person responds to the “Mito Cocktail,” the current treatment for Mitochondrial disease and consists of several vitamins and supplements, that there is a good chance that they would have some type of mitochondrial disease.
What is Mitochondrial Disease, you ask? Here’s a short description provided by the United Mitochondrial Disease Foundation:
“Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.”
Still with me? If you are, awesome! Since I enjoy having this new found energy combined with learning about Mitochondrial Diseases, I have decided to look more into it and see about getting tested. That way I may be able to find an even better course of treatment with the help of dr’s and nutritionist who specialize in Mitochondrial and Metabolic Diseases. In turn, transforming my little walk around the block into a walk around the neighborhood!
I can picture it.
The different sections of my spine, my ribs, pelvis, etc. all sitting around a table arguing. Why? Because they hate each other.
At least that’s what I think is going on.
My cervical spine seems to be pretty set on separating itself from both my skull and my thoracic spine. The thoracic spine desperately wants to be independent of my ribs and causing all sorts of raucous about it. My lumbar spine hears all this noise and arguing going on upstairs and wants out. Just plain out from all of it. Then we have the pelvis which is just about reading to implode on itself.
All I want is for everyone to shut up and just play nice with each other.
Is that too much to ask? Is it??
This whole dysfunctional spinal family scenario was inspired by a thread of fellow EDSers experiencing this very same phenomenon in which they aptly described as “Divorce.”
They were right in the whole idea. What goes on in my body feels like a giant family reunion gone very, neurotically, physically, violently wrong. What I don’t get is, why is it so hard to find a decent person who understands roughly what goes on with EDS to make an appointment? I’ve been given handfuls of names and numbers. I’ve called them all. Some say that I have to actually have some sort of surgical diagnosis to see a spine specialist or I have to wait until March. MARCH????? Really? I understand that there is a shortage of doctors. I understand that they are in high demand. What I don’t understand is what do we do while we are waiting five or so months to see someone to tell us something we already know, then send us off to someone else?
I am so very tired. I am considering getting my own patient advocate or caseworker.
i’m not out to convince you or draw upon your mind
Originally uploaded by andrea joseph’s illustrations
Doodling is a wonderful way to keep your mind active, be creative, and not worry about any talent. I personally love doodling and encourage it. It helps the mind calm down and has a zen-like quality to it. I like to do line doodles that appear somewhat random and I never know how they are going to come out. Then there is a whole other world of doodling that blows my mind! Here is one example! This doodle was done by Andrea Joseph and you can see more at her blog – http://andreajoseph24.blogspot.com.