New News

First and foremost, my friend Nicole (Nikki) Seefeldt finally got her lungs on December 2nd after a very long listing. Hers was the very first blog that I followed here on WordPress, and she suffers from not one, but two, rare diseases. Her listing for new lungs was much longer than she anticipated but she did not let that deter her from staying on course with her exercising to make sure that her recovery got off to the best start possible. Please, if you have no medical reason that your tissue or organs would be rejected, sign up to be a donor. All of my friends who have been organ recipients are eternally grateful.

Please check out her blog and progress here: As I Live & Breathe

Second, I was considering traveling to Washington D.C. in February to participate in their Rare Disease Week to learn how to effectively communicate with lawmakers. I applied for a travel grant and was participating in a large conference call where we were going over the details of the week and what would be awarded if we got the nod on our travel scholarships when the woman running the call received a notification that the Senate passed the bill for the 21st Century Cures. A week prior the bill had passed through the House. While we were on the call, she had started crying and then had to explain that it had taken two years to get the bill to pass – and with very little resistance from either major political party. The bill passed in the Senate with only five opposed. She then stated that President Obama indicated that if the House and the Senate passed the bill, he would absolutely sign the bill into law, with no hesitation.

Global Genes has published an article and hosted a podcast with me as a guest in the past. They are also the major partner in the rare disease week in February in D.C. that I may or may not attend – I may not be able to handle the grueling travel and having to be upright. But they have been fantastic about getting the word out about this bill and about keeping all of us connected in the rare disease world.

A lot of rare diseases are diagnosed during childhood, as is what happened with Nikki. However, I have rare diseases that haven’t been recognized until adulthood, and even one that we’re still not sure of. Some children don’t survive to adulthood. All of us have a better chance at a quality life if we have medications and treatments that don’t require a decade of testing before they are approved. There is no reason for us to stop advancing science to find answers. We will never run out of discoveries.  

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This is a Test

Another chronic illness blogger has been kind enough to let a bunch of us tell our stories on her site, and late last week my most up-to-date info was included. She has indicated that she may discontinue the series if she no longer has parties interested in being part of the project, but there are so many of us out there that I would be surprised if the well ever dried up.

From This Point. Forward.

Today was a really big day in my little alien world. I finally got the upright MRI that I’ve been asking for for 6.5 years. In all of the 56 doctors that I’ve seen, it has only been the most recent neurologist who hasn’t fought me on my request and put the order in.

So I got strapped into a chair and a cage was lowered over my head and screwed into place like I was Hannibal Lector. Like I was ready for some football and to call out some huts! I was sandwiched and squished between two huge, white panels, a bar propped between the panels for my hands and then one lower for feet to rest on to make my very own roller coaster ride more comfortable.

A couple of times the tech buzzed in and said, “I’m picking up movement. Try to keep very still.” I had explained to her that I sometimes have trouble with tremors in my neck when we were going over the questionnaire, but maybe she’s heard that line before and doesn’t think it’s important to remember. I breathe with my diaphragm, so at a break between segments, I moved my arms as far away from my torso as far as the sandwich bread slices would allow me – that way there was less of a chance that my smushed arms would move my head when I breathed.

The tech had given me the option of tilting the chair back at 30-45 degrees, but I explained that it would compromise what we are trying to catch on imaging, so I had to stay completely upright. The MRI takes about 40-45 minutes, and to make sure the pressure in my skull was really high, I exercised my arms for about five minutes both before the cab picked me up, and then again when I changed my clothes. All I have to do is mimic the bicycle motion with my arms like what I do in PT and I nearly go completely blind from the pressure in my skull. This is why I can’t exercise. I would probably give myself seizures.

At the end of it when I was extricated from the face trap/sandwich boards, I got up to walk and ended up stumbling around like a cat coming off of anesthesia. I had to have a lot of assistance to walk back to the room where my cane was waiting for me. I might have said, “No, I don’t need a fucking walker.” This scan had better not let me down.

To Put Into Words

Six days post-election here in the U.S., and it feels like every day is different.

The night of the election I stayed awake until about 11 pm until it was clear that Trump was going to win the electoral votes. I refused to watch TV; I couldn’t bear to listen to voices yelling in disbelief, but rather I listened to my own favorite music and instead refreshed Google and saw everything roll in real time.

On Wednesday morning I woke up with my alarm clock – or rather, I woke up with alarm, saying to myself, “Fuck, Trump is president.” I went through the motions of getting ready for an appointment; as luck would have it, my regularly scheduled counseling appointment just happened to be that morning. Above and beyond my normal anxiety and depression and PTSD, I cried for all of the kids that morning who my friend as a teacher said were scared in her classroom about being targeted by racism and ignorance because of their immigrant status and religious beliefs.

On Wednesday afternoon, I was shocked by a call I received out of the blue. Back in August I wrote a letter to the POTUS regarding the sluggish process of applying for disability and antiquated means of qualifying, when people like me are clearly disabled but can’t qualify because science hasn’t caught up to our diseases. This woman was a staff member of the Obama administration and she had the unfortunate task to call me the day after the shitty election to talk to me about my letter to make sure my immediate needs were being met. I assured her that my hospital bed finally came through (it should be here in a few hours this morning) after trying to get it since January. Then we talked about how my current governor chose to expand medical assistance (“Medicaid”) to everyone at or under a certain income level (which comes out to be around 120% of the poverty level, or $1313/month for a single person without children in my case). In two years when my governor’s term is up and he has indicated that he will not be seeking another term, our new governor has the option of continuing this, or only allowing people with children and/or only allowing people who are federally recognized as disabled (which I cannot get) to continue receiving medical assistance.

So to be clear, I could lose my last line of access to healthcare. I confirmed that with her because I just needed to say it. We both cried on the phone together.

She gave me her phone number and told me to call her in case I had any follow-up questions for her. I will call her this week to see if she has any connections at the NIH to see if I can get anyone to reconsider my case, but I think that’s all that I can ask of her.

There are so many things rolling around about Trump already. I’m not sure I can remember all of them and they change hourly, so please excuse my imperfect recall. First, there are rumors flying about his desire to only spend part of his time in the White House in D.C., and part of his time in his place in Manhattan. It can be argued that not all presidents lived at the White House 100% of the time, but that was probably before there was electricity and running water and the Secret Service and, you know, technology. It’s not like his Manhattan penthouse has a bunker in case he starts a nuclear war by being a complete asshole – and let’s get real, it’s not such a far-fetched expectation.

I’m not sure what to think about him actually making it to the swearing in ceremony. Is he truly going to trial for rape and false imprisonment of girls under the age of 18? Are those cases going to suddenly disappear just because some judge is going to feel sorry for a guy who has been elected, just like judges feel sorry for star athletes?

And Jesus H., why isn’t anyone bothered by how many times he has filed bankruptcy? When I worked for Bank of America, we had to pass strict financial checks, and I just worked in the tech area. We couldn’t be hired on if we had bad credit including bankruptcies or foreclosures or judgments. Also, during my years as an escrow assistant, I was especially skeeved out when I had to work with mortgage brokers who had no scruples about giving financial advice to customers when I knew that the brokers themselves were on their own fourth or fifth bankruptcy filing (they told me how they played the Ch. 13 system before the laws were made more strict).

After his first visit with Obama, he walked out telling everyone that he wasn’t going to reverse everything about the Affordable Care Act, specifically the bits about the pre-existing conditions. That means that he has already reversed one thing he promised the ignorant, writhing masses who were convinced that “Obamacare” was responsible for their rising premiums – not the greed of the insurance companies trying to make a profit off of our bodies at the widest margins possible.

So if Trump doesn’t get sworn in, does that mean we’re stuck with Pence? I’m screwed with him too, since I no longer have my uterus, and he thinks that’s all that I’m good for – bearing babies and overpopulating the earth. That’s all he’s concerned about. Read “The Handmaid’s Tale” by Margaret Atwood for reference.

On Thursday I had my very first psych evaluation test, ordered by a neurologist I met on Monday. It took about six hours to go through everything and I was mentally exhausted. It’s one thing to explain to doctors that I lose my words when I’m speaking and writing (you can’t see it, but sometimes it takes me 7-8 tries to write words that used to come easily to me), so this test was supposed to help pinpoint my deficiencies. From what I could tell I had pretty good picture and spatial cognition, but when it came to actual word gymnastics, I had a really hard time. One really painful portion of the testing was coming up with words that began with a particular letter. I think we did four or five letters total, but I only remember two letters – “A” and “S”. With the letter “S” I came up with about 10-12 words in 60 seconds that had multiple syllables, and with the letter “A” I came up with about 5 words and they were 1 to 2 syllables at most. It felt like the bottom of my mind had dropped out. This is actually what happens now on a regular basis and is one of the reasons that before every phone call I make I get a fair amount of anxiety, even if it’s just to make an appointment.

So after I went through all of that (I won’t get results for at least a few weeks), I got my usual cab ride/medical transport. I’ve been taking pictures of the cabbies and asking them questions and posting everything on Instagram. I asked this particular driver what he thought about the election because he was an immigrant and had only been living here in the U.S. for five years. He said he supported Trump because “Obama hadn’t done everything he promised to since he was elected.” I was absolutely floored. This guy was everything Trump (and all of Trump’s supporters) hated. I feel like his safety is at risk and I don’t want him to find out the hard way. I feel like all of us are at risk.

All of us, that is, unless you are a white guy between the age of 18-70 and you’re telling everyone else that they have to adapt to Trump/Pence and that you’ll be “fine” having your rights and/or access to basics taken away from you. Because, you know, ‘Murica.

This Will Help You To Be Curvy In All The Right Places (“Posture Pump” Sponsored Post)

Please note: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

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Three decades ago, my classmates would endlessly remark upon my excellent posture. I was attending a high school for the arts (think “Fame!”) and my art area was theater, but of course like most students there, I dabbled in multiple areas, so I picked up some things from dancing. Even when we sat on the floor of our black box theater in a circle I wouldn’t slouch. I wanted to have a strong back.

Boy, I miss those days. I’m 42 years old now, and I’ve spent the last six years in bed because of a mystery problem with my cerebrospinal fluid that is made worse when I sit upright. Laying in bed has weakened my core muscles and changed the natural curvature of both my cervical (neck) and lumbar (lower back) spine so my spine doesn’t have the “S” shape it should. For the most part I lay flat but I elevate my head slightly so that I can see my keyboard of my laptop, which is propped up on my stomach by a tilted laptop cooler.

For the last twenty years I’ve worked in some capacity in the technical field thanks to a boyfriend getting me interested in computers fairly early in my adulthood. Strangely enough, the posture of the techie and the posture that I find myself in when I am on bed rest are very similar: It’s an annoying “tech neck.” People in the technical field, and in fact, people who are stuck in front of a computer for 8+ hours a day end up in the same pose: shoulders slouched, head thrust forward, neck vertebrae compacted and misaligned.

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Now that I’m pointing it out, you might even be shifting around in your seat to correct your posture, or noticing it more in the people around you, like pedestrians crossing the street who won’t even look up from their smart phones. Yep – there’s the “tech neck.”

How about a visual?

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Even the slightest tilt of the head forward puts tremendous strain on the neck muscles and bones. Rather than adjusting the screen to a higher elevation, we tend to alter the position of our heads so that we are constantly in a hunched-over position – and we wonder why we have so many headaches!

But now that there’s been years of damage done, sitting up straight isn’t going to cure the numbness and tingling in your arms and fingers, or the stiffness in your neck. Of course, do sit up straight, and do take up your company’s offer to bring in someone who is trained in proper ergonomics for adjustments to your desk, but in the meantime (and for the long run), this product can offer you immediate relief. Sometimes it takes a village, right?

There is a family of products available through the Posture Pump® company for back and neck problems that addresses multiple issues, and the Posture Pump® Dual Disc Hydrator® (Model 1400-D) is going to save my neck.

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I already have spondylosis, which is a very technical and general way of saying that I have degeneration of the spine, and stenosis, which is a narrowing of the canal where the spinal cord passes through the vertebrae. I’ve got pain and stiffness, and my arms are tingling and spontaneously going numb because of the degeneration and narrowing happening in my neck.

Here’s a video on the Posture Pump® Dual Disc Hydrator® (Model 1400-D) and you can easily see how it works and how it can help you.  Click on the link below.

Click here:  https://www.youtube.com/watch?v=l6mjIKA_nDo&feature=youtu.be

To summarize, there are two air chambers that work on the neck and upper back area to realign the vertebrae to the natural “S” curve and relieve the pressure from the “tech neck” we have unwittingly positioned ourselves into. Ultimately the neck then benefits by being able to get nutrients and hydration to the discs in the spine, and range of motion improves. And headaches? What headaches? Wouldn’t it be nice to send those packing? You just need to lie on a flat, firm surface, strap yourself into the Posture Pump® Dual Disc Hydrator® (Model 1400-D) , and use the dual hand controls to get relief in just a few minutes’ time.

Here is a direct link to the product page: Posture Pump Dual Disc Hydrator Model 1400-D
For this item only, the company is offering a discount of 15%; just enter Z15 as the coupon code when checking out.

Check them out on Twitter for the latest news: https://twitter.com/POSTUREPUMP
They also have a Facebook page:  www.facebook.com/posturepump/

This product is made in the U.S. with quality materials that are meant to last – one lady has had her Posture Pump® for a decade! The company has other items that may serve you well too – check them out! Posture Pump

The Good Doctor

The colder weather is creeping in, and the vines that have clung to the outside of my building and my window in particular have changed to a bright red, signaling shorter daylight hours. The school of thought used to be that the cold stopped the leaves from keeping their green; instead, now we know that it’s the actual length of daylight hours that makes the leaves change from green to gold and red and burgundy.
2016-10-18-14-14-03Now that we are staying inside more, bacteria are just rolling around and proliferating like little Tasmanian devils. The little jerks caught up with me. First I caught the flu, and after five days of that it turned into a double ear infection (the nurse practitioner said both ears were severely affected but neither had perforated, luckily). Three days later I developed bronchitis…because why not?

In the middle of that mess while I was running a fever, I kept my appointment with my GI doctor because he’s very much booked ahead of time and it would take me months to get another appointment. I desperately need my medication for acid reflux because missing it for even a few hours is agony, plus I needed to discuss my new MCAS diagnosis with him so he would understand the importance of keeping me on the medications. He mentioned at my last appointment in February that he wanted to wean me off of the medications because he didn’t want me to develop long-term usage side effects like osteoporosis. Now it looks like I’m just going to have to live with it and be the old lady hunched over the shopping cart.

I had forgotten between February and now how much I like Dr. Chaudhary. I’m even going to use his real name because that’s how much I like him – no need to hide him behind behind a stage name. He is one of the few doctors who has not sent me away and he is not intimidated by the complexity of my body.

Dr. Chaudhary knows my primary care doctor, and so we chatted about her for a moment. Then we talked about my new diagnosis, and I thought ahead of time to bring the paper copy of Dr. Afrin’s notes. I knew Dr. Chaudhary would have access to Dr. Afrin’s notes in the system even though they belong to two different practices, but because Dr. Afrin’s notes are INSANE – and they are – I thought it would be better to bring the paper so he could flip instead of scroll.

Dr. Chaudhary paused and looked at me and said, “Can I be honest with you? I want to be honest with you.” I told him yes, that would be fine. He said, “I don’t think that Dr. Afrin can help you with the problem with the CSF, sweetie.” I immediately started to get teary-eyed, but told him that that was what I was thinking too, it’s just a very emotional conclusion for me, and he said he understood. (Even as I’m writing this, I am crying.) Dr. Chaudhary said that Dr. Afrin will probably get a lot of the other stuff under control if we can get the right combination of medicine going. I obviously know the drill.

Dr. Chaudhary then asked me who my neurosurgeon was. I had to explain to him how I had tried to go through every healthcare system in Minneapolis/St. Paul, as well as the Mayo, as well as petition to be sent to Johns Hopkins and to the Cleveland Clinic, but was turned down every time (the doctor handed me a tissue). I also told him about the three doctors at the U of M who misdiagnosed me and how it affected my request with the NIH Undiagnosed Diseases Network turning me down, and how my primary care doctor didn’t advocate for me. He seemed especially troubled by the last bit because she was his former student and co-worker but he didn’t ask any further questions on that matter. I asked Dr. Chaudhary if he had any connections, but he said that the one person he would send me to went back to India about five years ago, so that was no longer an option.

This whole exchange about my ongoing neurological mystery took about 7 minutes. What makes him a good doctor – hell, a GREAT doctor – is that neurology is NOT his area. Dr. Chaudhary still talked to me as if I knew what I was talking about, and he certainly didn’t offer up lame diagnoses like myasthenia gravis which has nothing to do with me (ahem, University of Minnesota Neurosurgery and Neurologists!). A friend asked what made him a good doctor. To me, a good doctor isn’t one that is just empathetic or sympathetic, because quite frankly, I get that all day long. Dr. Chaudhary is invested. All I can say to that is you know it when you see it.

I got my scripts refilled. As he was leaving, Dr. Chaudhary said, “I will always remember you. You are my patient who is the opposite of the doll – you stand up and your eyes close, and you lay down and your eyes open! Take care, my dear. Do not give up. I know it is hard, but do not give up.

I wish all of my doctors could be like him.

Maybe I’ll Go To Stanford After All

Not one but two ladies in my circle (Cara from the podcast In Sickness + In Health  and Kirsten of Chronic Sex) were able to attend the MedX conference at Stanford in September of this year (2016). Kirsten actually presented to attendees and both Cara and Kirsten have chronic conditions that affected their ability to travel and attend comfortably, but they powered through – because they have unique voices as patients to contribute to the perspective of healthcare. MedX operates under the motto of “Everyone Included” and that each person should be valued, while care should be human-centered.

This is a fairly new conference – only five years old – and is technology-based in the broadest sense, because Stanford is doing something that seems so, well, basic. They are inviting patients to the conversation.

I listened to this podcast by Danny Levine, who you may remember interviewed me way back in January regarding my dating life and how being a rare patient played into that. In this podcast he interviews a patient who attended the conference as an “ePatient,” which we find out probably stands for “empowered patient.” After listening to Cara, Kirsten, and now Emma’s stories, I’m motivated more than ever to apply to be included in their audience as an ePatient. I actively blog (and occasionally hop on podcasts and camera), and I’m certainly not too shy to share my story. I’m not sure if they would allow me to present but I would be open to it. I mean, if I can wear t-shirts inviting strangers to ask me about my weird allergies and failed shunt surgeries, I’m pretty sure I can handle the podium. (And this is where my theater training comes in handy!!)

I think something that a lot of us are grateful for (but many don’t know about) is that the conference offers scholarships for both attendance and for travel, both partial and full. For instance, I am not receiving any income this year because my disability case was denied because I didn’t have a diagnosis and the language my doctors are entering on my records isn’t really describing my situation. So now that I’m pulling money from my 401k to live off of – the absolute barest minimum so that I don’t lose it all to penalties and taxes but have enough to pay rent and student loans – I don’t have money for events like MedX, not just for attending the conference but also for flying there and sleeping in a bed. There’s a chance they could take pity on me for seeing 54 doctors and having 10 shunt surgeries and looking like Quasimodo and I could be in Stanford next year, telling a room full of people my story. So I’m gonna try. But my job as an ePatient is that I have to use my medium (blogging) to document my time there – at least three blogs of certain lengths. That’s absolutely no problem. I’m pretty chatty.

I’m a bit worried that like TV programs going for the cute puppy factor, MedX will want someone on stage who already has a happy ending, who won’t seem to be soliciting assistance for an unsolved mystery. Even with my recent MCAS diagnosis I have no idea if I’m there yet.

I’m also worried about traveling that distance by myself. I’ll lose a great deal of my vision from having to be upright for so many hours, plus I’ll be incredibly uncomfortable because I won’t be able to lay down to relieve the pressure and it’s pretty much guaranteed that I’ll develop tremors, so it would be great if I could have someone with me to act as my eyes and carry items as well as open doors. The national hydrocephalus conference was here in Minneapolis this year, and that was incredibly taxing on me, so I know traveling to California will be much harder. Cara is still suffering because of the nature of her chronic illnesses and unfortunately her body may take months to recover.

Why do we want to do it? Because, as patients, we are involved. Rarely do we enter or leave a doctor’s office without doing a ton of research. This conference is tech-heavy and is attended by doctors and researchers and administrative staff just as much as it is patients, and that is a direct reflection of the world we live in when we seek medical care.

At one point, Kirsten spoke up and suggested that the medical staff speak directly to the patient(s) while a presentation was being streamed to the masses online. A conference does not relieve doctors of certain responsibilities such as treating patients as individuals with valid input.

So I’d love to go and make some connections just as Cara and Kirsten and Emma have, and raise my hand and raise some hell if need be. I can think of a few dozen doctors who really need to attend and gain some perspective.

Can’t Find What You’re Looking For? Try The Thesaurus!

This was cute. Normally I’m not a fan of the Copy-and-Paste-Monster, because clearly the man is sending out hundreds of messages and just waiting to see who responds, but this guy either didn’t ask a friend for a second opinion before he started sending his out en masse or he had great confidence in his writing skills. Whatever the reason, enjoy:

Hello hope this finds you well!
I wanted to take a moment of your time and introduce myself, my name is J++++++n.
I have read your profile and really liked what you said concise and interesting.
Anyways you seem like a very interesting person to me and I would enjoy getting to know you better. Check my profile and hopefully there’s something that will interest you and if so, and you are interestead feel free to write me back.
Have a great day.

(Just as a reminder, this is what my profile says:
*******I’M ALLERGIC TO:********

– Hookups, FWB, DTF
– Threesomes, foursomes or moresomes
– All animals furred or feathered (even “hypoallergenic” animals), though I love them
– Misogynistic behavior
– Lame excuses
– Cheaters, liars, thieves
– Poor dental hygiene
– Conspiracy theorists
– Stalkers
– Contemporary country music, rap, hip hop
– Republicans
– Being called “cutie”
– Organized religion or prayer

What I’m doing with my life: Writing articles regarding rare and chronic diseases, trying to find the joy in life with new restrictions. Seriously – there is no way “arrow root pudding” is a real dessert!

I spend a lot of time thinking about: the fact that no one wanted to share a deep, dark secret, so OKC took that question away.

You should contact me if:
– You practice kindness and wit.
– You strive to live an authentic life.
– You are not addicted to beverages or chemicals.
– You are a non-smoker (of all things) and don’t use chew/snuff (ever).
– We live in the same country; my preference is to connect with someone in the same metro area because I dislike long distance relationships.
– You understand that no means no.
– You know and use proper grammar, spelling and punctuation.
– You would like me to proofread your profile for grammar, spelling and punctuation errors.
_____________________________________________________________

You would think that with just the basics, there would be at least a few things to chat about, even if it’s “Why can’t I snort coke off your tits?” – if you remember, that’s a gem from a previous OKCupid guy. Anyway, I would be interested to know why the guy doesn’t know any other term to use besides interested because there’s a whole world of knowledge out there on Thesaurus.com.)

********Fun fact:  In the time it took to sign on and copy my profile to this post, 23 guys looked at my OKCupid profile! Dangit, there’s going to be more material soon, I can just feel it. Breaking hearts and taking screen names……

Please, Sir, May I Have Some More?

My parents’ generation were the product of parents who lived through the Great Depression. My grandparents had to be creative with their resources; the flour companies started making pretty prints on their flour sacks once they figured out that mothers across America were using the sacks to make dresses. Re-purposing so that nothing went to waste, our grandparents were also guilty of turning their yards and barns into trash heaps. They were fearful of throwing anything away in case it would be needed in the future.

My parents’ generation, the baby boomer generation, turned around and said to their kids, “I’m going to give you everything I didn’t have,” which really meant that they wanted their kids to have new stuff. This started a trend of some of my classmates actually having cars being purchased for them, or having college tuition being paid for them, and by middle class – not wealthy – parents. Credit cards also started circulating heavily and regulations became non-existent, making it incredibly easy to rack up debt.

Now my peers are struggling to make ends meet and are in debt up to their ears while still providing cars and tuition and pocket-sized computers to their children as if they are staples, not privileges.

There’s a lot of talk about going back to basics and scaling back, while also teaching our children about how to manage money and understanding the consequences of debt.

I’m in a different kind of quandary, however. I need to figure out how to be poor. I mean really, really poor, in the current system – not what it was, and not what we wish it would be.

Back in 1995 when I took the road trip around the U.S. to pick a new place to live and ran out of money and said, “Okay, Albuquerque!”, I was poor. I landed with $100 and slept on someone’s futon for a month. But I was also able-bodied and picked up two jobs and moved into an apartment within a few weeks. I still had times where I lived off of $10 a week for groceries, but this is a little different. This is finite.

I sat down with the financial planner at my bank and figured out the rest of my bills for this year. However, I’m really stressing about my bed. It’s sagging and I can feel the springs poking through even with a thick foam topper – really bad for my fibromyalgia – and it’s only a year and a half old, and I’ve worn through it because I’m in bed for about 20-22 hours every day. Sleep Number is running a sale right now through September 11th and I could replace this bed for about $1100 including their least expensive base, and that would take care of the springs issue and would probably last 6-10 years. Do I buy it? Or does buying it now put me that much closer to eviction next year? If I’m evicted, what am I going to do with the bed? If I get housing at some point down the line, I’m going to need it again, uncontaminated by mold/dust/dander because of my mast cell disease.

I’ve had alopecia since the age of 3, and I lost my hair completely 14 years ago. There is a 30% off sale going on right now, which would give me a considerable discount on the wig I usually wear. Should I get that instead of a bed (it’s much less expensive)? Should I just give up on wigs now anyway because if I’m evicted next year for non-payment I won’t be able to afford them anyway and I don’t deserve to be so vain?

I have enough in my account to get me through to November of 2017. I’m a worrier by nature. All I can think about is, what am I going to do if I get turned down for disability? I mean, I hope the disability hearing happens by November 2017, because I filed for it in February 2016, and they are running 18-22 months behind (but just in case I have my senator flagging this case as “congressional interest”). Priority housing is given to people who are verified as disabled or who have children; if I am not verified as disabled (because I don’t have a diagnosis) and I don’t have children, I won’t have enough “points” to qualify for housing. All of my friends and family have pets and I’m deathly allergic, so moving in with them is not an option.

I’m concerned about both my mom’s health and my mom and step-dad’s financial stability, and my step-mom’s husband’s health and their financial stability. I’m concerned about my sister’s health and her family’s financial well-being. I’m concerned about my brother’s brand new baby who is due in the next few weeks and his little family’s financial stability. I recognize that they all have grave concerns of their own while they try to shield me from them and simultaneously try to take care of me. Certainly none of them can afford to pay for another adult’s living expenses.

I receive notices from friends telling me that I should support certain causes. I’ve said repeatedly that I don’t have any income and I won’t for at least another year, if at all, but they take “income” to mean working income. They just assume that I receive disability, even though I’ve said repeatedly and clearly that I’ve been turned down for disability numerous times. It wears me out to worry about being homeless, and I’m pretty overwhelmed by all the stuff I have to do to further my own cause since all of the offers of help were not really followed up on except by a select few, and it’s humiliating that I have to repeat myself to be heard.

This weekend I had a former fuck buddy hit me up out of the blue after years of silence to try to give me shit about moving back to my home state, mocking me about my claim that I was done with snow and cold when I moved to Arizona in 2003. I told him that I was pretty fucking sick and had stumped 54 doctors so far and could no longer live without assistance; he said he was working on three hangovers and he was sorry I was sick. He loves to talk about how he’s tired of welfare assholes, and I’m sure he thinks I’m one now too. We can’t even really have a conversation with each other anymore because in his eyes as well as in the view of the government, I have no value.

So where is the class that teaches me to navigate being homeless on the streets in a snow state? Do I get a free map to all of the soup kitchens? Where’s the best place to stash my cart outside while I warm up and surf the net in the library? How do I make a shank?

Pay The Toll To The Troll. The Price? Your Soul.

I don’t have any idea how often this happens, or who determines it, but supposedly, Mercury was in retrograde as of Thursday this week. Why don’t frogs just rain down from the skies and we can all just be done with it? No, the psychic attack is much more stealthy, I think. The back of my neck aches. My gums and mouth burns and everything tastes metallic. I fervently wish that Facebook incorporated a disgusted eye roll emoji in their current six options, up from the original singular thumbs-up option. My inner dialog changes: Get out of my way. Stop kicking my goddamn cane. Your perfume smells like cat piss. I’m not waiting 45 minutes this time before calling in to see if they forgot me again, I’m only waiting 30. I am going to scrub my fucking toilet until it fucking sparkles.

Even before Thursday hit I could feel the earth boiling, and my mood was cooking right along with it. I encountered my first troll on Tuesday night. A friend created a private Facebook group so that (mostly) she and the rest of us could say things that couldn’t be said unfiltered in front of a wider Facebook audience. The creator also uses the page to talk about her new grandchild, so obviously it’s not as restrictive as she originally intended. Anyway, a mutual friend was going through a rough patch with her boyfriend and had already talked about it at a coffee shop reunion the week prior, so when she posted in the group, she was just looking for further confirmation that she wasn’t being too harsh in her judgment; after all, when you are the one in the situation, it’s difficult to be objective. This jackass dude pipes in and starts criticizing her and tells her that she’s probably not communicating correctly or enough with the guy she’s in the relationship with – not at all helpful.

Knowing what I know of my friend, and knowing what I know of the guy she’s dating, I don’t hold back on the troll. First I tell him that she DOES and HAS communicated clearly what her boundaries are and that they have been violated repeatedly. Every point the poster or I bring up, the troll says we’re wrong. Then the troll starts talking about how this always happens to him, that he’s always attacked for having a “different viewpoint from most everyone else.” I told him then that it’s because he’s condescending and he has contradicted everything that the original poster and I have said. He said “No, I haven’t. Tell me where I have. I genuinely want to know.” So instead of turning the post into everything about him, I tell him to go back and read. His reaction is to laugh. Obviously there isn’t anything “genuine” about this jackass. The final straw is when the troll claims that we shouldn’t be “defensive, that he is only being inquisitive.” My response was, “You’re not inquisitive, you’re correcting both ___ and I, so that does not constitute a “different” perspective as if it somehow elevates you, it just makes you repulsive.

But then the owner of the group starts posting paragraphs about how we’re supposed to play nice. Then there’s more posts about how disappointed she is about our behavior and how she wants to shut the group down…but she doesn’t, because other people chime in that despite the fact that I’m a bad apple, the group is a “good idea” and some people claim it’s so great that she should “go global” with it – as if talking behind backs is a new concept. If that’s the case, I’ve got some oceanfront property in Arizona to sell to them. Lots of sand.

Troll #2 happens the next day, when I talk about this conversation. He listens for a few minutes, then bursts in with, “I HATE MEN!” As if I, Chelsea, hate men. I don’t. I do, however, hate men who: Lie, cheat, steal, are alcoholics/addicts, are abusive, are lazy, are filthy, are racist, are bigots, pollute, smoke, chew, are narcissists, and hate animals. I’m sure there’s more to the list, but that covers it for now. By the way, Troll #2 fits into quite a few of these categories. Hey, does someone smell butt hurt?

Troll #3 is on Thursday, the big retrograde day. I am pulled into a discussion about racism and white privilege. The person who tagged me is Native American, and the other person is white (and just happens to be an editor for Bloomberg and fancies himself to be an expert on the world and all experiences, like all white guys). The Native American wanted the privileged white dude to know that every other white person didn’t share his smugness. What it boils down to is that the white guy claims that no matter what, all people suffer, so racism, sexism and bigotry don’t actually exist, and we should just get over it. The examples I gave him – white men kick my cane when I’m in public, but women and just generally people of color don’t kick my cane; or white men shoulder check me – probably doesn’t happen, or if they do, they happen because people are just being shitty to me and it doesn’t have anything to do with privilege. He told me I needed to be friendlier (as in, “You are a woman, so you owe it to me, a privileged white male, to smile at me”), so I told him he needed to stop being a dick.

I’m not sure what the cure is. I don’t know how long this shit storm Mercury started lasts. Mercury is an asshole.

Amateur Hour: How Vanderbilt/NIH Undiagnosed Diseases Network Failed Me

Earlier this year, I worked for four hours sorting and copying approximately 350 pages of medical records to send to Vanderbilt University in Tennessee when the coordinator for the NIH Undiagnosed Diseases Network notified me that my case was being sent there for review. I divided everything by year and specialty. I inserted notes and highlighted everything that should be of special interest.

I took it as a bad sign when I received an email that was poorly written, and rightly so:
I need you help with some missing records the UDN has requested on you. We are missing the records from the Movement Disorder Neurologist and  also labs associated with Thyroiditis Workup are not complete. Please request these records be faxed directly to us at *********** or **********. We cannot move forward with reviewing your case until we have these records. Please feel free to contact us if you have any questions.” They weren’t actually missing the records from the movement disorders neurologist; the EMG results were included in what I forwarded to them. (Special note: capitalizing random words is an elementary mistake in and of itself and certainly doesn’t belong in official correspondence.) I wrote back and asked what needed to be obtained for the thyroid workup because I was going in for an appointment in the near future and could have tests ordered. However, I didn’t hear a response for weeks. Their suggestion to contact them with questions was not sincere because they didn’t respond to repeated calls or emails for three weeks total. I went to my appointment and guessed what they would want ordered, then forwarded them the results.

It didn’t matter, though. Last Thursday July 14th I received a letter in the mail from the head of the team saying that after a “stringent” review of my case, they were turning me down. They decided that because I have a strong history of autoimmune diseases that I must consider myasthenia gravis.

Here’s the problem, though: I considered myasthenia gravis already back in 2010, and again this year, and it has been ruled out by tests including the painful tasing of my face in April. All of those notes and tests were included in my paperwork. The 53 doctors who have seen me so far have positively said that I don’t have that. I also say I don’t have that. I have not found any documented cases where patients have received a working brain shunt to move CSF to relieve the symptoms of MG. I have hundreds of pages documenting my numerous symptoms and surgeries, and instead the Vanderbilt team chose to tell me to go back to the U of MN doctors (who, by the way, told me to go away and not come back) to get treatment for MG because “they would know how to treat me.” I am not allowed to appeal this decision or have any other team look at my file. The UDN door is forever closed to me now.

The next two paragraphs I’d like to address to that team directly:

Fuck you, Vanderbilt, you backwoods amateur cocksuckers.

This is what I don’t have: myasthenia gravis, lupus, MS, normal pressure hydrocephalus, communicating hydrocephalus, Creutzfeld-Jakob, IgG4 proliferation, scleroderma, pseudotumor cerebri, diabetes, secondary tremors, tumor, chiari malformation, or rheumatoid arthritis, among other things. After seeing so many doctors and going through hell and having to research A LOT on my own, Vanderbilt, your suggestion makes me think that my file landed in the hands of a beginner’s group. I’m way ahead of you, by years, and I didn’t even finish my medical degree. Every single one of you needs to go back to studying onion skin cells under your 10x microscopes because you obviously can’t handle the hard stuff.

As I feared, Vanderbilt chose to give much weight to the three doctors in the circle jerk at the U of MN claiming I had some sort of “facial weakness” that would imply MG and completely ignores the issue with the cerebral spinal fluid, which in turn ignores the vertigo, fatigue, slurred speech, numbness, and cognitive problems. It would also imply that I implanted a shunt for the fun of it – because I want something that I’m allergic to that causes a shit ton of pain in my body. It also means that they completely ignored the notes that indicated that my symptoms subsided when I had working shunts. Now I am back to the starting point, meaning no one knows what I have or how to help me. (Please note: I am still going through testing for the mast cell activation syndrome and I am watching the results slowly trickle in; my guess is that I’m going to have to repeat everything because nothing is extraordinary in the outcomes at this point.)

I also still don’t have disability money coming in. My hearing won’t be set until about a year from now, but my chances are only about 10% in my favor at the moment because I still can’t get a diagnosis or the NIH to work with me. I’m not being dramatic, I’m being realistic. My attorney would tell everyone the same thing.

If you have read this post in its entirety, thank you. I’m not asking for advice; that’s not how I operate. This is just one of those times where the Carousel of Crap feels extra shitty.