Exhaling

April 10, 2015, was the last day I commuted home from a paying job. It was the last day I was on a dreaded conference call with a bunch of frustrated staff members. It was a Friday, and only three weeks into a contracting job after being laid off from a place where I had worked for over twelve years. I was already nervous about surviving because work had been interrupted by so many shunt surgeries prior to that time, but April 10th was the final straw.

I remember driving home during rush hour and having the familiar “lights out” sensation cloud my vision. I was only working about 8 miles from home, but since it was rush hour, it would take at least 45 minutes, and the darkness squeezed in almost right after I got behind the wheel. It took all my energy to focus on my lane and not crash into anyone else. I don’t even remember how I made it to the hospital after that, which was another 7 miles in the opposite direction. But I remember having to call my boss the next day to tell him that I would never be coming back in; they wouldn’t hold a short contract position indefinitely.

I wasn’t even sure my neurosurgeon would do surgery #10 in less than 4 years at that point. He had already said after #9 back in November that if I failed again, he was not willing to operate. But he did – sort of. He only did half of the surgery. And of course it failed. And then he sent me away, telling me I had to figure out what was the source of the problem, because he wasn’t going to continue doing something that was going to keep failing. It was all being put on me.

I did figure it out. It took me from 2010 to 2017 and 65 doctors to put all of the pieces together, not to mention the fact that I am one person, not even an entire lab or radiology department. I got zero support from the NIH’s Undiagnosed Diseases Network. The Minnesota Board of Health decided not to discipline 3 doctors (among many) who falsified information to get out of treating me. The Mayo Clinic banned me so I wouldn’t hurt their success statistics and change their #1 in the nation status in 21+ areas.

I lost everything: my car, my house, my ability to earn a livable wage, my confidence, my sense of security and self-worth, friendships, independence, and every last penny of my financial reserves. Thank goodness I already lost my hair over 15 years ago because if I had to go through that right now I’d absolutely lose my shit.

After filing three years ago, I finally had my disability hearing on Wednesday the 28th of March. I didn’t know what to expect. My attorney pulled me into a small conference room prior to the hearing and prepped me, telling me that if the judge asked me questions, to not take longer than 15-20 seconds to answer, and to speak up because he was older and may be hard of hearing. I was also told it may go as long as an hour.

But five minutes, and we were done. Long enough to read my name, and say that it was obvious I was disabled and not making anything up. The letters I asked Dr. Afrin and my current immunologist write for me were key for my case and noted in the judgment. The judge also specifically said that the way I was treated by the majority of the 65 doctors was appalling.

What’s next? I have to wait for Social Security to process the judge’s ruling, and then enter my info for payment, and like the Kool-Aid man, all you’ll see is my silhouette – I’m busting outta here. I gave Minnesota a fair shake for three years, but the fact that so many doctors lied in my medical records and refused to treat me has made my decision an easy one. I’ve decided to head back to Arizona where I will pick up again with 8 of the doctors I previously had; only a few will be switched out, including getting in with a neurologist who specializes in MCAS and Ehlers-Danlos. (Minnesota is a great place to be employed as a nurse, because they are paid relatively well, but it’s a horrible place to be a patient, and I’m far from being the only person who feels this way.)

I want to be clear about what this disability status means for me: 1) It doesn’t change any day-to-day abilities that I have. I still have to lay down and rest for the majority of my day, about 20 hours every day. 2) The actual status of disability is not permanent; I’ll be reviewed and my medical records will be combed through every few years by Social Security to make sure my health and abilities haven’t changed. 3) I still have to take the short bus everywhere, especially now since I’ll be making “too much” to get medical assistance (which is more than $0.00). 4) I still can’t get a motorized scooter – do you really want a half-blind person driving one of those??

My prediction is that this is all going to go down by the end of May, but I’m at the mercy of Social Security.

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Now You See Me

About a month ago, my fellow blogger Nikki (As I Live and Breathe, http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.

“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?

I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.

If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.

Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:
https://blab.im/nikkiseefeldt-sickadilly-chat-4-let-s-talk-about-tech-baby-ci-disab-rare-dis

Don’t Ever Think ‘Equality’ Is A Dirty Word

We need women (and MEN) from all walks of life, from all occupations, from all age groups, to get on the bandwagon with the idea that equality is worth it. Already my nephews, aged 10 and 6, have started reciting the ugly words, “Boys are smarter than girls.” They certainly didn’t learn that from me or their parents. Now our work is even harder with trying to turn that thought process around (if it is even a process – because they are more parrots at that age than scholars).

I want all girls and boys to grow up to appreciate differences while embracing each other for their value as human beings first.

I want women to receive equal pay for equal work.

I want men to stop claiming all space as their own, including women’s bodies.

I want women to be supportive, rather than see each other as competition to be beat.

But in addition to that:

I want people who are labeled “disabled” to be out in the work force (if they are able) and have a social life filled with inclusion, and to be portrayed correctly in advertising, TV and movies.

I want “inspiration porn” to end.

I want the freedom to practice – or NOT practice – any and every religion of my choosing.

I want churches to start paying taxes.

I want people of ALL races to be valued, truly, but I want privilege to be acknowledged and then driven to extinction.

I want our actions to match our words.

I want choices, whether it’s the company I keep, the job that pays the bills, the food I put in my body, the chemicals I keep away from my dwelling and the doctors I see. The more we work towards total inclusion, the better our lives will feel, period.

http://www.huffingtonpost.com/entry/jennifer-lawrence-feminism-equal-pay_us_56d08bfee4b03260bf769e58?

Are You There, God? It’s Me, Chelsea

Judy Blume wrote from the perspective she was most familiar with – her own. It’s what we all do. It’s what makes our stories unique, especially when we look at the story teller as female vs. male, as tall vs. short, as narrow vs. wide, as black vs. white, as wheeled vs. walking.

Something that Judy Blume would have no perspective on is the experience of a girl going through puberty and dealing with questions about her body and her sexuality while also experiencing a physical disability. For instance, would it be so easy to use a tampon if your hands did not have the dexterity and strength that most girls had simply because you had cerebral palsy? It seems unfair that a girl with CP have to advertise to the world that she had to install a brick (aka pad) in her underwear because a tampon was just too damn complicated.

For me, my baldness has flavored many stories. I didn’t choose to lose all my hair. I had absolutely no control on it falling out, and I have no control on it growing back. However, wigs have gotten so good that I can “pass” to the untrained eye. I still get a once- or twice-over.

This woman is hugely disappointed because she has never been catcalled. I’m sure she’s faced many, many types of discrimination, but she is heartbroken because she has never been desired simply for her appearance. She is always going to be liked for her personality, and only after she has been passed over by many, many men. She has never written in her journal that some stranger said something sexual and inappropriate to her, and she told him to fuck off and then ran-walked away.

Right now I only use a cane to help me walk – my walker stays in my closet. But I know a bit about what she feels. I am treated completely different when I’m walking with my cane compared to no cane. I even feel different, more vulnerable without it, because I know that when my feet are slapping together and my face is paralyzed, I’ve lost all desirability.

http://www.huffingtonpost.com/the-establishment/nobody-catcalls-the-woman-in-the-wheelchair_b_9130226.html