this is how super aspie procrastinates

I loathe forms. I'm good with technical information like OSHA training and cartography and NEPA laws. I'm awesome at organizing ideas, thoughts, and actions around millions of dollars of inventory floor merch and stat cleanup in a hotel or hospital. I can even go straight to a particularly sized and threaded bolt in under a minute of walking into Lowe's. But filling out forms...

You'd think the simple step by step process would be the easiest thing in the world. Name, address, phone number, how many pieces of gum I've chewed in the last ten years. The irony is that I have turned answering questionnaires into a hobby blog, I could practically compete in a professional question answering contest. The reality is that, despite acing blue book tests in a very hard linguistics class for my anthropology minor, I freeze up over simple forms so badly that I actually do them wrong.

I know, right? Who gets their name wrong on a basic form? Who screws up answering a few questions to which the answers haven't changed in twenty years? ME.

I am facing my demons this week. Here is my conundrum- My publisher has people calling me every single week. They have changed my case rep at least three times in the last 6 months trying to get me to cooperate. I can't get through any of their heads that 1- I'm super aspie and don't do phone convos well at all because 2- between auditory processing probs and slight hearing loss AND being aspie that I need them to 3- SLOW DOWN and stop the sell, sell, sell rattling on top of a background rich with other voices, furniture noises, and tech glitches cutting syllables out of every fifth word before 4- I hang up because the cacophony fries my brain out so badly I can barely speak sentences after only a few minutes, much less still form coherent thoughts.

I live with cognitive disability. This hasn't impacted my cognitive content much at all. My lawyer told me during one of the lowest points in my life that my IQ must be through the roof and he wished all his clients were like me. Sadly, it all becomes unusable mush so quickly from interruptions and distractions that I'd never be hired to work for a guy like him.

I need an office manager. They used to call them secretaries, but I know from one of my sisters that getting office skills certified and then actually running an office is no joke. I don't have the money to hire someone, and even if I did I have such a distrusting nature that I probably wouldn't anyway. The people who I do trust have piles of their own stuff to deal with.

I have to do this. If I want to move forward, I have to wrap my glitchy brain around interpersonal communication with a complete stranger many miles away who doesn't have a clue how to help me help them help me. I have to train my rep how to be my handler. I have to do this with a cognitive disability.

Years ago, one of my biggest breakthroughs with my psychologist was when I told him how frustrated I felt being referred to specialists by my doctor, only to have prescriptions thrown at me after five minutes. I felt like the problem wasn't even being defined, much less investigated as to cause. To simply generically treat symptoms doesn't help me get better. You know what my psychologist told me? He said I am easily led. I stray off my path with every new question, and after a few questions the original goal is so out of focus that I can't get back to my path. My assignment was to keep my goals in sight- why am I there? what do I want? So I learned to list a few questions like that before visits with new doctors, and with a little practice I was able to remain more focused and clearly state what I wanted to get out of the interaction. After many years of misunderstandings and sometimes very poor care from some doctors, I am much healthier now and way more satisfied with those interactions.

I don't get to see my publishing rep in person. I have to cut through possibly years of phone bank training and experience to get a different kind of interaction going. I get to do all this over tech that distorts background noise into a nightmare for me, and I need to do this as calmly and politely as possible when I'm feeling my most frustrated. It's so cliche to say I'll need xanax, but that may be exactly what saves the day for me.

Prepping for this phone call involves skills I'm actually very good at. I'm a research maven with years of organization experience. Even this post is part of the prep, it's helping me line up my thoughts and calm my nerves. I keep telling myself once the first book is out the door, the rest will be a piece of cake, because that's how I usually am with new things.

But the forms.... "Does this work contain any preexisting materials?" I have questions regarding how to answer nearly every question on these four endless pages. My rep will practically have to hold my hand through this whole form filling outing process, and she's going hate my guts before it's all done. *facepalm* Because I'm aspie. I can't just check a little yes or no box without forcing another person to commit to mental gymnastics because they can't understand that I don't need a textbook understanding of their job, but I DO need them to please repeat that entire last phrase at least three times because for some unknown reason they can't fathom what slowing down their talking means. Maybe it means I'm so dumb they feel they have to keep over explaining everything, but all I need is to correctly hear the words they speak. I'm sure they're wondering how in the world I think *I* could ever write a book.

I can tell from that last paragraph that I'm not ready for this phone call yet. I may have to go fold some laundry and clean some bathrooms first while the xanax kicks in. I don't know why my psychologist doesn't think my social anxiety isn't as severe as I think it is. This is ridiculous. My rule of thumb over the last year is that if something is upsetting or terrifying me, find a way to write it and throw it out to public, because that is usually more terrifying than just doing the thing I'm afraid of in the first place. So, here it goes.

new year spoonie assessment

Last winter didn't look terribly hopeful but it was a huge step up for me from winters before. This winter is amazingly way better than so many years past. What changed this year? Here you go, have a power point review.



The biggest thing was finding out I'm allergic to acetaminophen. I've been living on benadryl for so long, dealing with so many other reactions, never occurred to me I might be having a continual reaction all this time underneath everything else. I'm already banned from ibuprofen, so there's not a lot I can do any more about home pain treatment. Requires being smarter than ever before, avoiding impending consequences, not being stupid about overdoing and overextending myself. Pills are a quick fix anyway, not a cure that keeps you from crashing sooner or later.

The next huge thing was ASTYM, all the new rage in fibromyalgia treatment, based on postitive results with athletes. I spent 4 months in grueling ASTYM therapy, deep soft tissue massage for the purpose of breaking up hardened scar tissues for better blood flow and muscle control. That alone has dropped my pain level enough to exist without daily pain meds, hooray! I still hurt, and the pain levels can still shoot pretty high, but I've been given 'permission' now to do what I always found instinctual- dig deep where it hurts. Pressure points are key, and then stretching and exercise are crucial.

The biggest difference from last winter to this that I'm noticing is a serious lack of migraines. I spent last winter with the shades drawn and barely able to cognitively function, much less read. This winter I'm doing just about anything I want with minimal occipital nerve problems and greatly reduced nerve reverb overall up and down my spine. Again, still have some interesting pain, just way easier to live with. A neurologist has finally documented the body-wide dysesthenia I developed last winter as healing from an ancient car accident. He said nerves can take years to heal, especially after being thrown violently out of a car, and being very ill with lupus and diabetes and several rough viruses along the way stopped the healing process for awhile. I'm still avoiding alcohol, don't smoke, eating healthy, trying to get plenty of rest, staying well hydrated, exercising regularly, and not going over my fatigue limitations. I am trying to keep up higher protein and healthy fats in my diet since protein builds tissues and fats are vital for nerve health.

I am currently having a stiff knee/leg from carrying a 15 pound baby around while she was teething, but nothing swelling up so it's most likely frogged muscles from muscle strain. I see a chiropractor once a month and take zyrtec daily to help me sleep on the advice of two different doctors. The zyrtec also helps my body stay calm when it wants to over react. An allergist diagnosed me with autoimmune reaction disorder, says it's common for people like me to just start hyper reacting to everything, so there you go.

If you're a spoonie running into this, I hope it helps. Most insurance and medicare will pay for the ASTYM therapy, but you have to ask your doctor for the referral. Good luck with your stuff.

pill phobia at its finest

I have felt like this the last couple of years thanx to zealous overmedicating by my doctors.  Coming out of my stupor now.  New year, new things, feel like a new person.

Briefly, it's pure and simple medical mistakes.  I was already on 3X the blood pressure med I really needed (ironically, that can force your heart to freak out and go into panic mode, making it look like you still have high blood pressure), was put on a daily inhaled steroid after no one caught that I had an allergic reaction to my rarely used rescue inhaler last spring and assumed instead I had asthma, those two meds wreaked enough havoc to spike my blood sugar into crazy mode and now I've been labeled diabetic, and in the middle of all that, my thyroid went beserk and they bumped up the dose.

In January, after months of this cascading domino affect with no supervision because my old doctor left her practice in September and all her patients dangling, my body exploded.  It felt like the worst anxiety imagineable, and urgent care only told me they don't handle anxiety.  Finally got in to a new doctor after the new year and he had the wit to ask if NO one thought I might be allergic to my rescue inhaler and sent me to a pulminologist.  Went to PFT lab-- no asthma.  At all.  It's all med-induced.  Then we started trying new blood pressure meds, that went absolutely nuts and I went through 5 changes in 3 weeks.  Wound up back on the original-- only a third of what I'd been on before.  That was a horrible experience, 3 solid weeks of super high BP and racing pulse, only to find it wasn't necessary.  And after I got those meds figured out, my blood sugar started adjusting back down.  By itself.  I wasn't even taking the meds the doctor gave me for diabetes.  I used a glucose monitor and just watched it, studied online what to do, made lifestyle changes, and I'm nearly back to normal now.  Now I'm getting test results back that I've gone hyperthyroid since everything else is settling back down.  Once again, time to back off on a med.

How many people on this earth spiral into 'natural aging' through overmedicating?  I had reached a point of near immobility, severe disability, unable to function even cognitively.  Now?  I'm able to do daily walks without gasping for air or collapsing from severe fatigue, I can think again, and I even started doing things like cleaning out drawers.  I hadn't cleaned my house beyond dishes and laundry for two years.  Can only wonder where I'd be if even just one doctor had looked at me holistically, the whole body responding to all my meds, systems affecting other systems.  Everything medical nowadays is so standardized, you get this test result, you tweak that med, you have a problem, you add another med, usually something like an anti-depressant to calm the patient down, and then those are a real biatch to get off of because some of them are more addicting than heroin (so I've read).

I don't recommend that people just start getting off their meds, but after that wild cascade I went through over time, I can see why our society is so full of chronically ill people.  I have spent my adult life in pain and fibro and autoimmune problems that started with a bad car accident and damage to my spine when I was 19, but the resulting over medicating through the years with anti inflammatories and steroids crashing me slowly into organ damage and despair and nearly complete immobility was ALL MEDICATIONS.  Once you are taking meds to fix side effects of other meds, you are on a downhill slide, and there is no coming out of it.

I can't say enough for a good chiropractor with a physical therapy staff, a kind psychologist who gets to know you well, and attempting to eat healthy and get a little exercise.  Study your meds, observe your own body, don't assume doctors will 'save' you from your own ignorance.  And bless those that actually try not to hand out easy meds.  I'm done being a guinea pig lost in the medical maze.  If all I have to do is stop drinking pop and eat some salad to save tens of thousands of dollars in medical bills, huzzah!