Lhunpaurwen's Ramblings

Yaaay Ember! She is the Dog of the Day today!


Spreading awareness for assistance dogs and invisible disabilities.


http://dogoftheday.com/archive/2015/August/11.html

Having Raynaud's Syndrome / Vasospasm in your chest HURTS. A lot. That is all.

Because I "look okay" on the outside, it is hard for people to understand what I deal with on a daily basis with my medical conditions. This is a little something that passes around the various communities and through friends who also struggle with their own problems, that helps describe it pretty accurately.

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"I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.


Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”


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http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory

Good news everybody! ::Saracasm::


I have officially been diagnosed with Sjögren's Syndrome!


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---For Those Going WTF Is That?---

Sjogren's (SHOW-grins) syndrome is a chronic autoimmune disease in which your body’s immune system attacks the moisture producing glands of the body.

Sjogren's syndrome often accompanies other immune system disorders, such as rheumatoid arthritis and lupus. In Sjogren's syndrome, the mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first, resulting in decreased production of tears and saliva.

The two main symptoms of Sjogren's syndrome are:
Dry eyes. Your eyes may burn, itch or feel gritty, as if there's sand in them.
Dry mouth. Your mouth may feel like it's full of cotton, making it difficult to swallow or speak.

Some people with Sjogren's syndrome also experience one or more of the following:

Joint pain, swelling and stiffness
Swollen salivary glands (particularly the set behind your jaw and in front of your ears)
Severe dental issues
Skin rashes or dry skin
Vaginal dryness
Persistent dry cough
Chronic Bronchitis
Dry sinuses or sinus issues
Prolonged fatigue

It may affect other organs of the body, including the kidneys, blood vessels, lungs, liver, pancreas, peripheral nervous system and brain.

For more info, see:


http://en.wikipedia.org/wiki/Sj%C3%B6gren%27s_syndrome


http://www.sjogrens.org


http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275


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While it isn’t a good thing to have, it is a huge relief I finally have a doctor who is recognizing that there is more than Fibromyalgia at work and trying to help me fix it rather than just masking symptoms with medications.

As of now, I have been diagnosed with two clearly recognized autoimmune disorders occurring on top of Fibromyalgia and my Dysautonomia. Having a doctor acknowledge that is huge. It’s only taken 10 years to get this far.

I asked him about the disability application, and he is totally 100% on board and told me how some of it would work, as far as how he’d get paperwork to fill out after I submitted my application. He renewed my permit, so I now have a permanent disability parking permit. It actually comes with a little ID card here in Louisiana. Apparently some states use it to verify you are the tag owner.

Only thing he didn’t do, which bummed me, is he didn’t give me another shot in my wrist. He said after what happened last time ( me passing out ) he wanted to try something else. So I got a topical instead, which has to be specially compounded and sent to me. I’m hard pressed to think it will work, but I’ll try it before I knock it and beg for the injection again.

I finally have hope that things are taking a turn in the right direction with all this medical crazy I have lived with for years.


I will still need people who are willing to write on my behalf for the disability application. If you already have ( thank you guys again SO much! ), I plan to use those.

If you are willing to write a statement, please let me know.

I’ll be starting this whole process in January, after the holidays.