I was notified via a little handwritten note attached to a form I requested from my former school district (Dante's Inferno level 14) that my COBRA health coverage runs out as of March 31. Nothing like a little warning here. The really annoying part is that without health insurance, especially prescription insurance, I pretty much become a contest to see which major body system fails first. For a while there I felt overwhelmed, as my options are pretty limited and the time is short. This would not be an issue if Social Security had not been such bastards and had just approved my claim and not forced an appeal because then I would have Medicare. Two options have already been eliminated. I can convert my COBRA insurance plan to an individual health care plan, but insurance is apparently for the healthy. Once I met the $2500 deductible, I would pay up to $100 per prescription until the insurance company had paind $2500 and then it would be all on me. Two of my prescriptions added together would take out the $2500. It allows a gracious 2 physicial visits per year. Something tells me Botox and wheelchairs and leg braces are not covered. I then checked to see if I could be added on to my father's insurance plan as a disabled dependent, but he is now on Medicare and so that is a no go. I am down to throwing myself at the mercy of the state and praying that there is an answer. I have faith that God will provide an answer, as He has never failed me before and He is not going to change His ways now. Even though it feels like I am in the middle of a quagmire, barely able to lift a foot without losing my boot to the muck, I know He is creating a way. Prayers are always appreciated.



Zombies are real, and I had the bizarre chance to meet one this week while having my blood drawn. Apparently they are drawn to Vampires. I was having my blood drawn, half listening to the conversation in the curtained area next to me because they were talking as if they were on a Broadway stage without microphones. Suddenly I hear the man make a proclamation that startled me.
"And I have rigor mortis!"
Now being the daughter of a large city homicide detective, I am relatively familiar with rigor mortis. Being a word nerd, I am relatively familiar with the root word of mortis. If he has rigor mortis then he definitely wins the prize for having the worst day ever. Considering he was breathing and talking, and I later saw him shuffling down the hallway, I can say with some certainty that he is not fully dead. This leaves one of two choices. He is out of his mind insane or a zombie. He never called out for brains, but given the cumulative IQ of the staff it would have been a meager snack for him and my brain is so scrambled it probably would cause an ulcer. I am guessing the guy is a little stiff in new situations and sticks out a bit at parties. I wonder if I get a diagnosis of rigor mortis of Social Security would approve me then? :)

I am totally stuck with "nothing worth writing about" block, but I want to put something up here. Thus you will be subject to the random sparks of my mind as it tries to kindle a fire to keep itself warm because it is once again below zero outside. Now I get that I live way above that Mason-Dixon line, but does Mother Nature need to keep rubbing my face in it and giving me a white wash? If we could get the windchill into a positive two digit number I would be her new bestest friend. I lost one of my wheelchair gloves in the vast black hole that is Walmart, which means I now have one pair so when my hands get soaking freezing cold and wet from the slush that no one gives a darn about doing anything with anymore I have no other gloves to change in to. I suppose I should shake the money tree extra hard and buy replacement gloves, but dang it - who would find and keep a single fingerless glove? And its not like it was brand new, it had been put through its paces for a while and was nicely broken in.
I finished the experimental dosage of massive antibiotics to see if we could eliminate an infectious cause for my daily fevers and so far, so good. I did manage to acquire a sinus infection while on a broad spectrum antibiotic, which amazes me but shouldn't as my immune system really does suck like that. And this time of year is like playing craps every time I go out because I am allergic to the flu shot and I rely on public transportation - oh what a bad combination that is, being unable to get the vaccine and then immersing myself in a mobile petri dish of horrors.
Speaking of the joys of the mobile petri dish, I had a woman who was using a motorized scooter sitting next to me on the bus and she felt some strange compulsion to tell me her life story. She also kept patting my arm. Then she looked at me expectantly like I was going to reveal the deep dark secret of how I became disabled and how hard life is for me. I just looked at her, smirked, told her "Yeah, I caught a bad case of dystonia" and pulled out my cell phone to play WordTwist. She visibly sagged in disappointment over the fact that I was not giving her at least an equally juicy story full of horrors and "poor me"s. Sorry lady, I had just done battle through Walmart, sans gloves, and I was in no mood to have a Hallmark moment, or a Mallox moment.
I think maybe this weekend I will finally take down the small Christmas tree that is still sitting on the craft table in my bedroom and put it away. After being hesitant to do much for the holidays this year, I am now too lazy to take all of the ornaments off of the little sucker and pack it up. It is oh so tempting to just cut out some hearts, stick them on, and make it a Valentine's Day tree, then repeat with Shamrocks for St. Patrick's Day, Eggs and flowers for Easter, etc. But eventually I do want my craft table back. It is also very tempting to just shove the entire thing in a box, ornaments and all, but I know that next December I would be very angry with myself for that little stunt. Sad thing is, I am not really ashamed of still having the Christmas tree up, as much as almost proud in a twisted sort of manner. :)
I will hopefully be back soon with more insightful, thoughtful or at least funny insights. Like the fact that the punk who decided he was done with his slice of pizza at Walmart and chucked it over the shelves from his aisle into mine where it landed dangerously close to me is lucky he can run faster than I can wheel or I would still be picking his DNA out of my tires. Or the fact that the people most likely to help you when you are in a wheelchair and can't reach something or drop something or get stuck in, say, 14 inches of snow are women of childbearing age. It brings out the mothering instinct. Men rarely help unless they have a woman with them that they want to appear especially chivalrous for, or I flat out ask them and they get a neat deer in the headlights look. Sometimes I like cornering a guy just to see that look when I ask for help. Its like I am asking for help getting dressed instead of reaching the milk.

I have wheelchair envy. I want a Tank-Chair wheelchair as shown above. This thing is awesome! It can handle snow, like the 14 inches we received this past week on top of the foot or so already on the ground, and its snowing again today! It can handle sand and water so beaches are accessible!Wet, slippery pavement is no problem!  And no one is going to be stupid enough to get in your way when you are driving down the aisle of the local store in one of these!! If I ran over toes in this thing, I would most certainly get the person's attention!! And leave tread marks behind!

I received this award from Lynn at Autism Army Mom.

Here are the rules for this meme (apologies for the original award but I changed some of the language to make it appropriate for my journal):

1. You must proudly display the absolutely disgusting graphic that I have created for these purposes.  It's so bad that not only did I use COMIC SANS, but there's even a little freaking jumping, celebrating kitten down there at the bottom.It's horrifying! But its presence in your award celebration is crucial to the memetastic process we're creating here.

2. You must list 5 things about yourself, and 4 of them must be bold-faced lies. Just make some crap up, we'll never know; one of them has to be true, though. Of course, nobody will ever know the difference, so we're just on the honor system here. I trust you. Except for the 4 that you lied about.! 

3. You must pass this award on to 5 bloggers that you either like or don't like or don't really have much of an opinion about. I don't care who you pick, and nobody needs to know why. I mean, you can give a reason if you want, but I don't really care.

4. If you fail to follow any of the above rules, I will  hunt youdown and harass you incessantly until you either block me on Twitter or ban my IP address from visiting your blog. I don't know if you can actually do that last thing, but I will become so annoying to you that you will actually go out and hire an IT professional to train you on how to ban IP addresses just so that I'll leave you alone. I'm serious. I'm going to do these things. 

**NEW** 5. This one isn't actually a rule, but once you do the above, please link up to the Memetastic Hop so that I can keep track of where this thing goes. 


My 4 lies and 1 truth:

1) I am a member of a secret society. Now I must kill you for knowing.
2) I fell while walking across the stage at my college graduation, showing everyone my underwear. 
3) I legally drank before turning 21.
4) I have a tattoo above my buttocks that says "Made in China".
5) I once made my niece clean the bathroom floor with her toothbrush.


I pass this award on to anyone who wishes to participate.

I wish I had something brilliant or hysterical to write about, but I have spent the last week since my Dysautonomic crash recovering and sleeping 16 hours per day or more. That was definitely one of my worse crashes and one I would like to avoid. The actual written protocol that I have in my medical binder of records and other pertinent information, because doesn't everyone have one of those, to treat a crash is to carefully infuse fluids until my blood pressure begins to rise to my normal, treat pain as needed, and call the neurologist with any questions or concerns. Living in a small town, the local drs have no familiarity with someone as complicated as me and thus my neuro wrote out a treatment plan. Also unfortunately triggers are not easily avoided. They include things like getting too warm or too cold, being in a loud environment for too long, bright lights, flashing/flickering lights, stress both emotional and physical, low blood sugar, forgetting to drink enough (because I have no sense of thirst), and pain. Stress can actually include positive emotions like being excited about something. Things I can no longer do because of the triggers include going to concerts (I love music), going to movies in theaters (I have about a 60/40 odds of triggering a crash if I go see a movie, not in my favor, from the rapid flickering of the film and the loud soundtrack), attending any crowded events, being outside in summer. Yet even if I avoid all triggers I can still crash for no apparent reason, seemingly out of nowhere. This is something that it took a long time for my family to understand, that I really was sick at virtually every family get together because it was so stressful, loud, and crowded. Now the stress has been reduced a LOT, and as you can see from the video of the wrapping paper fight I did fine this year.
This coming week I have two doctors appointments that I have delayed just a wee little bit. So I have been having almost daily fevers for the past, um, two months or so. Sometimes Tylenol works, sometimes throwing in an illegal Ibuprofen finally works, sometimes they are stubborn. I know dysautonomia impacts my body's ability to regulate temperature so I am going with that being the cause, but I have a feeling my internist is going to be a little unhappy that it has taken me two months to come in and mention this to him so we can eliminate other possibilities. Actually I am taking bets between the internist on Monday and the hematologist on Tuesday as to who is more angry with me for my "ignore it and it will go away" approach to medicine. Hematology is my yearly checkin since I am on Lovenox (injections of blood thinners) for Lupus Anticoagulant (blood clotting disorder) after having had a stroke (RIND) when pieces of two blood clots in my arm broke off and went through the hole in my heart (PFO - we did not know about it until afterwards) to my brain. I think I may be bounced back to the GI doctor/nutritionist since even though I have recovered the ability to swallow, my stomach seems only able to tolerate simple grains like corn flakes, bagels, toast, corn chips, and rice. If I eat anything more complicated, especially a protein, I become very nauseous (Thank God for Zofran!) and my stomach hurts. Yet I am gaining weight as if preparing for a famine.
I will try to write something much more entertaining this week. If nothing else I can write about freezing to death tomorrow when temperatures are in the single digits with negative windchills and I am waiting for a handicap accessible bus to take me to my doctor's appointment and the fun of wheeling through snow and slush. Tomorrow I will be wearing enough layers that I will be able to do a wicked imitation of the kid in A Christmas Story "I can't put my arms down!".
Thank you for reading this!! You Rock!!

Yesterday I experienced one of my more severe, most dreaded Dysautonomic crashes (also known as crises but I prefer the term crash as it is very much like suddenly slamming into a brick wall doing 60 mph and crumpling to the ground). I had simply gone to the pharmacy to pick up three much needed medications and this act resulted in my body being unable to process the input it was receiving and I went from functioning to slamming into that brick wall in about 10 seconds flat. The typical crash goes like this - my blood pressure peers over the edge, contemplates the alternatives, and then plummets. It is secretively a sadomasichistic entity that loves to torture itself and the body in which it dwells by climbing peaks and throwing itself off of them, never knowing where it will land. I develop a headache that makes my migraines look appealing and that is impervious to pain medicine. Laying absolutely flat - no pillows, no incline at all- in a pitch dark room and not moving a muscle can take a little of the edge off of the headache. I am dizzy and if I try to move into an upright position frequently tap dance very close to passing out. Nausea follows the headache, and last night I ended up vomiting. Impressively, I vomited in the dark into a trash bag lined garbage can and did not miss a drop - nothing on the bed, nothing on me. I am a professional. My heart rate does weird things during these crashes and it frequently alternates between skipping beats and throwing extra ones in for the fun of it. This started at about 4pm yesterday and the fun did not end until sometime around 6am. I finally fell asleep around 3:30am after being able to slip some meds into my stomach and convincing it to keep them down, but at that point I still had the massive headache.
Today I am in the "hangover" phase in which it feels very much like I have done 10 rounds in a boxing ring, then gotten run over by a semi truck as I crawled home. I slept basically all day today as my body tried to reset itself, and I have been having to try to push fluids to make up all the ones I lost out on. If I am going to feel this hungover, I at least want the night of drinking before hand and the embarrassing stories to go along with it. Preferrably with pictures and or video. I have never even been near drunk, but I know what a hangover must feel like, including the little man who pranced in a field of manure and then danced a jig in my mouth while I slept last night. Evil little creature!  The frustrating thing is that, while I can avoid known triggers of these crashes, they still happen out of nowhere and slam me hard and fast and viciously. All that seeking ER treatment would do would establish IV fluids, there is no other treatment plan for these crashes as any medication administered has a risk of triggering another extreme reaction. I do have access to zofran, pain medication, and reglan at home but they only do so much. This is a part of living with Dysautonomia that few people see, that few people understand, and that does not neatly fit on a checklist of daily living skills for assessment.