Less Pun, More Action

Well thanks to about five types of diagnostic eye drops I have a cause of my problem. Episclerosis... a chronic case and bit high on the intensity scale. I was impressed to find out that the inner gooey parts of my eye are intact with no bleeds. Lots of things go through your head when your body is falling off you like a zombie. Diabetic eye bleeds were on my list. So with many jabs it seemed a fairly easy diagnosis for the staff once the slit test proved my inner eye was fine.

My visual acuity however has dropped again and I expect will stay the same with only a minor decline. I also learned not to say blindness to an eye doctor. They don't seem to accept the term legal blindness, it's either total or not at all. I had been referring to an optometrist telling me I will be legally blind in x amount of years. Since I know what legal blindness pertains i.e. no driving and probably crap for visual hobbies I am pretty sure I'm getting there. My sister is just about there which is okay because she doesn't drive and likes audio books just fine.

I also had my renew for food stamps pass. The caseworker I had was very serious about everything, which was ironic because she told me I sent proofs they didn't need. Can't have it both ways, either I'm scared shit less I won't be able to eat if I don't give you every detail of my life or I don't take it seriously. I do appreciate what she did because I have a feeling it scares off a alot of fakes who think food stamps is free junk food money. It's literally how I eat though I do occasionally buy ice cream. That's right I'm bad. (Dairy products help with severe Gerd and stomach ulcers) Also it tastes good.

So now I have an eye diagnosis pointing away from MS and back at lupus/Vasculitis/???. It's aggravating because even if I went right back to the Rheumatologist I don't think she has the patience for an episode of mystery diagnosis. I do have the skin biopsy and pictures as well as this eye thing now. But it seems like if she didn't take the test it's worthless. Speaking of tests I have an outstanding order for blood work I have to sneak in for that diabetes check, bleh!

Gloom Clouds still make rain!

I don't think I have ever had such a bad time with online medical research as I have over my skin condition. Yes, it's in the exzema family which every website blanketly tells people isn't a serious thing. My scarred butt would very much like to disagree with that. I did with longer searching notice that the particular modality in which my dermatitis grows and spreads is the most serious of that family. It also has a nasty habit of resisting topical medication. Still at least I don't mind looking a little funny. I can't imagine how a vain person without my persistence could ever go outside again. I will at least have to rethink bathing suits of which I didn't have one that fit anyway.

The SSA is taking an interesting tact with my review process. They have more than enough to say I still qualify but the have become very interested in my panic disorder. Because of the heart arrhythmia I am technically taking a medicine for that. Doesn't it always confuse people when medicationshe have a dual use? The cardiologist I saw was very weirded out that I was on lisinopril for my kidneys in case I finally jump the gap between pre-diabetes and diabetes II. So while I can say I am on a medicine for my anxiety that doesn't seem as important as why am I not seeing a psychiatrist? Well for one more drugs would probably make me sicker. I have a lot of drug sensitivities and if my sister's trial and error search for her Bipolar medicine taught me anything is that it's too easy to get suicidal thanks to a bad medicine.

Find me a psychologist and I would be much more interested. Speaking of the brain all this records seeking and a recent MRI got me guilted into making a to do list about following up with the specialistsame I don't see much. That would be the neuro ophthalmologist whom I am due to see and the new neuro that couldn't get my old files. I guess I won't have to worry about files because my old one takes my insurance again! I even got a super early appointment so I won't have to wait so bad in the office.

The question is has anything really change relevant to them?  What do I have that they can use? Well as of my new lumbar MRI I know that I have Degenerative Disc Disease primarily in my lower back. I have figured out two major chemical stimulants that trigger shaking fits, Cafinee & BVO. I also know at least one visual trigger for my Dystonia...a scene from a very specific movie. Beyond that I know police lights also tend to set it off which I am pretty sure means it's not lights so much as patterns which do it. I can also tell them that the rheumatologist didn't find anything to explain my positive csv serum. I guess that's more than I thought.

A Touch of the Phage

There is only so long a person can go before some spots become bothersome. At the moment about 25% of my body is covered in sores and only 5% of that is appropriate for a general website. Indeed I joked with my husband today that perhaps the most people ever have seen my rear today and not to mention they took pictures. No worries folks he is not jealous since all of them were in lab coats. After a long wait I was able to get into a local dermatologist to identify my "rash". I have always had typical allergic rashes or hives but never anything lasting over 48 hours. For some reason I thought an expert would know right away what was wrong with me on site. Yet the physician assistant wasn't sure until she had see all 25%. My bottom is by far the worst and craggliest of all at the moment, though to be fair it's more my thigh than the buttocks proper.

Having a hole punched through my arm wasn't something I had expected. Indeed I found myself a little concerned when I saw one of the trays readied with anesthetic's a fresh scalpel and some other accouterments. When I think of a skin biopsy I really am thinking a needle puncture or a slice. To be fair the first thing they did was a scraping of the fresh sores on that same arm. I have a feeling no fungus was present because they immediately threw out the plausibility that it could just be some wacky fungal infection. I was sure it couldn't be fungus since I had already tried a specialized cream without improvement.

I mentioned that I was under diagnosis for autoimmunity and the doctor got more excited. I asked for a biopsy which ends with said hole in my arm that required two sutures. Hearing that they might play a key role in solving my mystery diagnosis went a long way. Of course the doctor also wants his own copies of my autoimmune testing now so he can try and break the case. I promised to bring along copies to my next visit of those from the Beaumont hospital system.

Standing up for myself in social situations has really paid off recently. It also has it's downfalls as my husband had to lead me away from a manager I was going to correct after he had been rude to us...and his coworker had found our product in less than two minutes right where it should have been. I wasn't about to interrupt his phone call to do it however which the husband used to urge me away. Correcting someone on their courtesy isn't a great use of my limited energy. This is where I mention the spoon theory came up recently again in conversation. Sometimes I have to remind myself since when I am feeling well I overspend and set myself up for failure come a symptomatic week.

Just a Little Theta Radiation

I am a true fan of hard science everything from astronomy to genetics. It has a real power to inform and improve peoples lives. You need a lot of help in this when you have allergies and chronic diseases. Yesterday I came across some bad news that I have dangerous deletions in my mitochondrial DNA sequence. I had been researching it for genealogical purposes when up popped a national institute of health article related to genbank about those sequences controlling proteins, some relevant to neurotransmitters. According to my checkup with the hemotologist my levels are within range still though the hemoglobin is a little on the high side. This means I won't be needing transfusion until next spring. So yes, I certainly believe in the effect of science.

Last night I had a horrible dystonia event which lasted 3-5 hours. Since it was with extreme abdominal pain I can tell it was from a stimulant allergy. Of the suspect materials I encountered one was just an old soda pop I used to enjoy and then we ordered from a new Chinese food location which may have had MSG. In the past MSG has set off fevers and my irritable bowel. Yet that was days ago so what could be the problem.

I came across some pretty convincing research just now that my culprit maybe good old Mt. Dew. For one thing it has twice as much caffeine then Pepsi which I can tolerate within reason. High amounts of caffeine make my heart palpitations prominent and of course sets of my dystonia. (I didn't intend to buy it but a delivery man substituted it for another flavor.) The question I have as an allergy sufferer is why only some foods?

I already discovered this year that some brands sell wheatbread that is actually white with dye. This is in contrast to my poor tolerence of whole grain bread which is most certainly all wheat. When companies lie about ingredients it puts allergy suffers in danger and confuses their loved ones. I can drink some "caffeinated" drinks but not others, so why Mt. Dew? When I was tested by my rheumatologist she discovered I was still suffering from active Hashimoto's Thyroiditis. Since my visit with her my thyroid medicine has been doubled and I now have less symptoms.

Looking at the list of Mt. Dew ingredients we find brominated vegetable oil. There is a good chance that its soy based which I have mentioned before I have poor tolerance for. More importantly, "Bromide is a halide which has been shown to inhibit thyroid function by blocking the uptake of iodine. When in an iodine deficient state and bromine is supplied, the thyroid gland will take it in because it's *appears* to be a close substitute for iodine" (Buist, 2008).

Why is bromide there? It suspends the soluble citrus in the drink. Having a serious thyroid condition however makes this a dangerous element to ingest. Yellow dye#5 Tartrazine has also been questioned because of allergic reactions to it. Not only does it cause itching and asthma symptoms it also can cause moderate psychological effects such as sleep disturbance if you are sensitive to it.

Does this mean I am saying its poison? No, but I remind those with suppressed immune systems, food allergies and unusual allergies to pay attention to what your body tells you. Stay safe with what you eat.

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https://en.wikipedia.org/wiki/Mountain_Dew#Ingredients
http://www.naturalthyroidchoices.com/MtDew.html
http://www.epicurious.com/archive/blogs/editor/2014/04/5-things-you-need-to-understand-about-whole-grains.html

Alternate Timelines or Reruns?

Its come to that time again where I suddenly am doubting what is wrong with me. This time I think it is prompted both by hearing my roommates cousin is accused of faking his possible ALS by his sister and the fact that I received a copy of my recent MRI. The idea that someone could accuse a person in a walker if not wheel chair who requires assisted living of making up his symptoms is appalling. It makes me worry about how others see me. I am trying to function as close to normal as possible without inflicting an episode on myself. I have been warned before that patients shouldn't see their imaging because they often jump to conclusions over shadows or lack there of. I do not see my lesions any longer on the film. That means it took them at least 3 years to heal.

Last night was another bought of sudden food allergy. Its a good reminder I guess that I can't just view my neurological and hematology symptoms as the singular disability. In fact it occurred to me to look through the auto-acceptance conditions for SSA. Liver disease is one of them. I've already been told mine is the progressive form though in the early possible reversible stage. That is to say it could become stagnant but not improve. It would be the same as treating the bone problems in my feet which will eventually make it impossible for me to walk without pain. You can only keep it from getting worse.

I have yet to schedule with the rheumatology specialist. I had waited to finish at the opthalmologist first. My lack of social grace if not enthusiasm is drawing some critique again because I don't want to go to a cousin in law's first baby's birthday. I already had two painful dinners with my parents to celebrate the holidays and my graduation. As usual I am too preoccupied to enjoy the event because of nausea and panic. Happily the winter heating season is at least coming to an end so I won't have to worry about running outside in tears and considering ripping off my clothes to relive the temperature sickness.

Perhaps this is just as it has been in the past with my off-year from a flare up causing doubt. I do have my medical findings CD at least from my SSI case at least. I found it hidden in a cardboard envelope that I thought was a safe place during the move last year. Everything is of course blacked out and still has the warning of liability attached to it. I am sure one of two events prompts that action, either mistreatment causing the flare or perhaps misdiagnosis after. I could care less with the exception of wondering why I got disability so easily. My sisters three year review seems to have passed silently. I believe mine is coming either end of this year or perhaps 2015. Graduate school begins within a few weeks. I hope I am not fooling myself about my competency. There is the realization however that I may not truly get to work again but I have to try, don't I?