I've said it's Mitochondrial disease awareness week. So few people really know what Mito is and how complex it really can be. People affected by Mitochondrial disease range from being severely disabled and bed bound to people who seemingly "look fine". I tend to fall under the category of people who "look fine", although as my disease process has progressed, some say that when they really know me and my habits as well as my general appearance, they are able to tell when I am feeling better and/or worse. My adopted Mama Mary is one of those people, and most of the nurses I have worked with at the Home are able to notice these things. During a crisis I tend to become very pale (more so than usual) and also weak. But that's beside the point. I figured for those people who have no idea what Mitochondrial disease really is and how it affects people, I would give some small insight on my blog about what it's like to live with Mito.
My day usually starts between 8 and 10 AM. It depends entirely on what day it is and what classes I have on said day, as well as the time I was able to fall asleep the night prior. Generally on a "normal" night to be able to function I need at least 9-10 hours of sleep. On days where my energy levels are especially low, that can be as much as 12-14 hours. It is important for me to be very diligent about what my body is telling me. Indications that my energy levels are low include muscle fatigue and general fatigue overall. When I am fatigued I am generally not able to focus well on much of anything, so it doesn't make much sense to do anything but try to rest and/or sleep. I get up and have to make up my supplement right away so that I make sure I have enough time to digest said supplement before I try to introduce any solid food. Generally because of my stomach problems drinking liquids is much easier for me than eating solid food. Eating solid food causes reflux and nausea so I try to wait at least 2 hours after waking up to introduce solid food. My supplement is called Carnation Breakfast Essentials. It's not generally used as a supplement for people with medically caused nutritional issues, but I have difficulty tolerating Ensure because of my allergies to dairy. I came up with the Breakfast Essentials (actually my Grandma did) because it's a powder packet that a person generally mixes with milk. Instead of using milk, I use Lactaid which is much easier for me to tolerate. I also have orange juice in the morning to give my immune system some extra vitamin C, but I use low acid orange juice because of my issues with reflux. In the morning I also take most of my medications and supplements. This includes Symbicort for my asthma and breathing issues, Vitamin C, a multivitamin, Vitamin D with Calcium, CoQ10, birth control for ovarian cysts, and Selenium. In comparison this really isn't a lot when looking at other Mito patients. I'm definitely one of the lucky ones.
School is somewhat difficult at times because it requires energy to be able to sit upright. The chairs don't give a lot of support to my back and trunk muscles but for the most part I do pretty well. Lately I've been able to rest a lot more at home since being off of work, so that does help a great deal.
Most of the rest of my day is spent either in a recliner or in my bed. These are the places I am able to get the best back, neck, and trunk support and I am also able to get the best rest. It's interesting because my bed can become pretty messy when I put all of my things for homework, television remotes, computer and plugin, and phone and charger all in one small area but for the most part I am able to make things work. I get up every once in a while (probably about once an hour) to either use the bathroom or move around a little bit. It has been a struggle for me because I want to be back to being up and around and at work like I am used to. I know it will take time and it is very frustrating but I will continue to work on it.
Now for a medical update:
I haven't received a call about the cortisol levels yet but I am anticipating them anytime now. I was able to get in contact with my insurance company and they said that more than likely I will qualify for some short term disability even if I pick up some hours in activities. They are e-mailing me the forms for these benefits so I should be able to be getting coverage sometime in the near future. Yesterday when I went in to get my blood drawn I also asked about the B-12 injections Dr. P ordered. They gave me the first injection yesterday. I am supposed to get one injection a week for the next three weeks and then one every four weeks after that. It will be interesting to see how the Cortisol levels turn out as well. Medical coverage starts very soon, October 1st. So all of the testing I have been going through will finally go through insurance claim processes so that they can be paid for.
I have a lot of other things to take care of and they are getting a little overwhelming. Nothing I can't handle, I just need to sit down, chill out, and write it all down.
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