Pat, I’d Like To Solve The Puzzle

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This week I’ve been taking care of stuff; taking care of me by walking to make myself stronger, taking care of medical records, taking care of clogs in my sinks and taking care of throwing out excess trash. It’s the medical records that sent into emotional pits, though. I was angry after reviewing a bunch of misinformation and it was rolling around in my head. But then I had an epiphany.

Back when I started having operations on my cranium, when my shunts were relocated from my back to my brain, my neurosurgeon remarked that my meninges were incredibly tough to break through. I don’t believe he’s ever noted that on my medical records, though. But his memory is like a steel trap so if I went back to him, he will probably be able to recall it with certainty. It certainly stuck with me. He said he had only seen it once before in his lifetime.

And then there was this published paper by Jonathan Kipnis where he explains that he and his team discovered lymphatic drainage vessels in the cranium. They weren’t known about before because when autopsies and dissections were performed, the lymphatic vessels were torn and destroyed because of their fragility. This paper was published in July of 2015; I traded emails with Jonathan in November of 2015. He explained that he doesn’t actually work with humans in clinical trials so he couldn’t help me, but after I connected the dots this week, I emailed him. I’m not sure I’ll hear from him.

Lastly, I have this mast cell activation disease diagnosis from Dr. Afrin. When I saw him in January, he told me that my outrageously high histamine level is probably what is making everything change and grow into scar tissue, including the tumor, as well as the tract along the shunt.

So here’s what I think is happening: Back in 2010 when I first started having the really bad symptoms, the meninges had already turned tough because of my high histamine levels, and the fluid can’t drain properly into the lymphatic drainage vessels like it normally would. That’s why I need shunts. The shitty part is that I’m allergic to the shunts. Just as an aside, this whole time I thought that the underlying cause was an autoimmune disease, but of course I had no idea what it would be.

So what now? That’s the question my mom asked. The tissue that has changed cannot be changed back. There is nothing on the market that I’m not allergic to. I’m at a high risk for aneurysm or stroke. This is going to kill me, there’s just no telling when. I mean really, who else do you know that is going through this? None of my doctors would be able to begin to guess.

Of course, I have to check with my doctors…but again, I’m the one leading them, not the other way around, which is almost always the way it is with rare disease. First I’ll see the neurologist and explain all of this to her, and hand her Dr. Afrin’s notes and Dr. Kipnis’ notes. I’ll see Dr. Afrin in August. After that, I’ll contact my neurosurgeon in Phoenix and roll this past him. I hope that he remembers that I was right about everything that I told him, even though some things took as much as 2.5 years to admit.

So for now I’m still waiting for my disability hearing. I talked to my attorney’s office and they called the person who sets the dates for the hearings, and they were told that hearings were being set for 18-22 months past the appeal filing. My last appeal was filed in February of 2016 (the initial filing was April 2015), so by the time I’m in front of a judge, I’ll have been waiting for nearly 3 years. Every state is different. I can’t get a rush unless I’m homeless, stage IV cancer, a danger to myself, or I have no access to care.

So I wait.  

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You Are Not Alone

It was such a beautiful day – partly cloudy, unseasonably warm. Such a beautiful day that our uncle’s soul could not be contained by the body that was failing, so he took his last breath at 9:00 a.m., sharp. He was never really one to sit still for very long anyway.

My brother called me last night. I had already taken my last dose of meds and had stumbled into my pajamas, when he said, “Chels, you need to get here. He’s here at the hospital and he’s not going to make it through the night.” I clawed out of my pajamas and hurriedly put my clothes back on, and then called my sister. I knew as soon as I heard her voice that she would not be able to get out of bed because she was sick as a dog. She was heartbroken and asked me to say goodbye for her.

Texting with my brother, I advised him that my cab was on its way, and he told me that our uncle was not responding. I started shaking. I tried to remember to put random things into my purse, including my phone charger and my favorite cough drops. I put on extra deodorant (though I knew I was fighting a losing battle on that one – I sweat like crazy when the fluid builds up in my brain like it has been for the last 9 months while I’m upright).

After what seemed like an eternity, but was really only about 20 minutes, the cab arrived. He asked me where I was going. I told him the facility. He asked me how to get there, because he had just moved to the area from Phoenix. Great. The blind leading the blind. Then on the way he had to stop for gas (but he kept the meter running, saying it was at a “reduced rate”). I couldn’t believe it. I was crying and trying to explain to him that I wasn’t sure if I would make it to the hospital on time. Then he started quizzing me on how old my uncle was and if he was sick for long. I’m not new, I know where this line of questioning leads: some stranger-danger jackass is going to tell me that he lived a long life (a week and a half short of reaching 65) and that if he was sick a long time, then I shouldn’t be sad.

But I am sad. You see, my uncle and I missed out on two decades of knowing each other. When he found out I was sick, he began slowly reaching out to me. But before that, we had had no contact. Twenty years ago, his brother – my dad – died, and as people do when they endure a major life event like that, we acted our worst. First, we fought over what Dad should wear to be buried. Whenever he wasn’t working, Dad was in either pajamas or very grubby outdoor clothes, and we kids and our step-mom said we wanted Dad to be buried in his (very nice) favorite pajamas. Our uncle put his foot down and said he should be buried in a 3-piece suit, because otherwise, what would their clients think? (Dad and our uncle along with their close friend owned a successful business.) I told him that the funeral wasn’t for the clients. Eventually we settled on the favorite pajama pants and a nice shirt.

Second, our uncle took me aside and told me, “I know I wasn’t very interested in you when you were growing up. I figured you didn’t really need me because your dad was so involved in your life. Now that he’s gone, if you ever need advice, you can come to me.” I was 22 at the time and already had been living away from home for about 5.5 years, so I felt as if he really missed the boat on being part of my life. Mostly I was hurt that he admitted what he thought about me. I was raw from dealing with the sudden loss of my dad and had no support like everyone else who was there and paired up like they were going on Noah’s Ark – no boyfriend and no spouse. I did what I had perfected long ago, and that was to shut down emotionally. 19 years have passed since we buried Dad and I moved around the country.

Slowly last year my uncle’s messages started to trickle in. He even made a donation to my YouCaring page to help me with expenses during my Magical Medical Mystery Tour. When he found out I was moving back to Minnesota, he asked if we could spend some time together. So the week after all of my belongings arrived and were still taking over my living room/bedroom, we squeezed a chair in between the boxes and the wall so that he could talk to me while I laid flat on the bed. I was mid-sentence in giving him a generic update on what was happening with me when he grabbed my hand and said while fighting back tears, “I’m sorry. I’m so happy to see you.” 

Now that I’m 20 years older and have contemplated life, death and illness, it was all I needed to hear. I repeated his words back to him. He leaned over from the chair to hug me tight and we cried. It’s the crying that you do when you see life with such clarity and you know that your time is limited. It’s the crying that you do when you’re not afraid of death but you are afraid of not being able to make wrongs right before it’s time for you to shed your body. He had stage IV squamous cell carcinoma and didn’t know how long he had until he could no longer function. We managed to have a few more visits before Christmas; after Christmas, he developed pneumonia and was sentenced to bed rest and constant care by his new girlfriend.

Last night a group of people hovered around his hospital room, all red-eyed and occasionally sadly smiling over the sharing of memories. I thanked his girlfriend for taking such good care of him; she went home to rest. Eventually the visitors dwindled down until it was my brother and I, our cousin and his best friend, our uncle’s ex-wife and our uncle’s best friend/long-time business partner. My nighttime meds were kicking in and making me extremely sleepy and I desperately needed to lay down to take the pressure off of my brain, so someone very kindly set up a cot for me in the family waiting room. My brother opted to sleep in the chairs. Everyone else stayed in the room with our uncle. I figured that we would hear sometime in the night that our uncle had passed.

I woke up and stumbled to the community bathroom and tried to make myself presentable. My eye makeup was smeared to raccoon status. My deodorant indeed was a huge disappointment. I stopped pretending to care and instead made my way to our uncle’s room. Surprisingly, only the best friend was there watching over our uncle – my uncle’s son, his best friend and the ex-wife had gone home to change clothes and make sure the dog was taken care of. My brother was still asleep in the family room and so the best friend/business partner went to get coffee while I stayed at my uncle’s bedside.

I used my time with him to sing. Sometimes it was impossible to get the notes out because the knot in my throat strangled me with grief. He wasn’t conscious and was fighting to take in air while he slowly drowned in his lungs. It was painful to watch because our once super-fit uncle had fluid pooling in his abdomen and lungs, prompting him to keep his mouth gaping open while he worked just as hard to push the air out as he did to get the oxygen in. Singing was all I knew to do because I felt helpless – I was coming into this process late and didn’t know what his wishes were as far as pain control went.

When my brother and my uncle’s friend entered the room, they both were concerned about the amount of work it was taking for my uncle to try to get air into his lungs. He seemed to be clenching his fists a bit and his shoulders were also working themselves forward and back in an effort to try to take in oxygen. The three of us decided that we wanted him to be comfortable, so I found the nurse and asked her if we could get assistance with pain medication. We talked about the effect that upping his meds would have on him, which was mainly depressed breathing. I was concerned that our uncle’s son wouldn’t make it back to the hospital in time. My sister and her husband were also trying to get there to say goodbye. But we went ahead and had the orders changed so our uncle could receive his meds more frequently to aid him in dying in comfort. We didn’t know when that would happen, because he survived another night when he should have been gone, really.

The nurse gave him painkillers in his IV and some drops under his tongue; he seemed to settle down and labored less to take in air. I stepped out of the room for about three minutes to make a phone call. When I returned, his color had changed completely. Our uncle was taking in small, shallow breaths, and his skin had taken on an unnatural tone of yellow with underlying grey. My brother held one hand while I held the other, and our uncle’s friend stayed at his feet. We all told him we loved him, we all wanted him to feel no pain, and it was okay.

I watched the pulse at his neck as it slowly ebbed like a far-off ripple on a lake. Finally, I put my fingers to his carotid and confirmed there was no pulse. The friend went to the nurse’s station to call the nurse and resident into the room. Our uncle had left, to join his mom and dad, his brother and sister, and probably my sister, as well as countless other souls who were no longer caged by their bodies. No more pain, only flying free.

My dad (L) and my uncle (R), playing around with their mom’s pantyhose. 

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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

Buying Cruelty Free: Physician’s Formula

Source: Buying Cruelty Free: Physician’s Formula

Well, my psychic powers have been in full force for the last week. Prime example: I wrote my “Bee’s Knees” piece before I read this one, which also talks about making conscientious purchases, including makeup products. I hope we continue the momentum.

The Bee’s Knees

I’m watching “Morgan Spurlock: Inside Man” on Netflix, and as always, he puts together thoughtful pieces about the things we should be concerned about as humans and consumers. I mean, I really enjoyed the episode from Season 3, “Morgan the Matchmaker” because, duh, dating; but there are others that really speak to my sense of responsibility to the earth and to other humans.

For instance, also from Season 3, Morgan explores trash in Episode 6, “United States of Trash.” I try not to create loads of trash. I recycle tons of stuff. But as careful as I try to be, I still generate the equivalent of a Walgreen’s plastic shopping bag of trash every week. I learned something new. Specifically, you can take those glass jars with the metal closures and rubber ring around the lid for a tighter seal to the grocery store with you and have the meat department deposit the meat IN THERE instead of packaging it, even if it’s “just” the paper. Guess what? There’s also less of a chance of cross contamination if it’s in the sealed glass jar rather than in the paper (which you might insist on wrapping in another plastic bag). Also, if you wash your glass jars in food safe dish soap, you aren’t going to pick up chemicals (like you do in containers that are half or all plastic). What amazed me the most was that the family of 4 saved 40% off of their monthly grocery bill by bringing their own containers.
I can no longer drive and stash my reusable bags in my car, but I still make it a point to bring them with me when I do my own shopping. Any time we can leave a little less plastic in the world is best, but even I know I must get better about my own consumption.

Season 3, Episode 7 is “Honey Bee-Ware.” I remember when the big study was put out about how scientists were really excited about figuring out why hives were dying out in great numbers, and they firmly believed it was the result of these little mites that were invading the bodies of the bees and then effectively decapitating them. Something about zombie bees, blah blah blah.

Really, the concern should have been focused on pesticides and herbicides. Morgan interviewed a Harvard researcher who had indisputable proof that the deaths were related to the use of (trace) amounts of neonicotinoids. The popular product “Roundup” has glyphosate, also known to cause just as many problems after being researched. When the European Union found out about the results, they immediately banned those chemicals.

The problem with the U.S. is that we allow ourselves to be guinea pigs for everything – food, cosmetics, cleaning products. We assume that our responsibility and our concern falls only within the U.S. borders, and we’ll take care of “it” later after a number of decades have passed and we suddenly have a large percentage of the population sporting eyeballs from their ears or some weirdness like that. But our trash is in the world’s oceans. We eat poisoned food, use 110 chemicals a day in cosmetics ranging from toothpaste to eyeliner to soap, and we leave smears of chemicals around our kitchens and bathrooms that we would never dream of putting in our mouths, but that’s where they end up anyway.

I mean, think about it: Would you put that Chlorox wet wipe in your mouth and suck on it like a pacifier? I’m guessing not, but somehow you have convinced yourself that it’s safe putting it on every surface you can find. Nothing is really clean unless it’s been passed over by harsh chemicals, right?

<sigh> This brings up the whole discussion about superbugs, but I’m going to think about that one a little longer before I cover it.

My new diet to combat my Lyme bacterial infestation has to be all organic (no chemicals, hormones, artificial anything), and I can’t have any dairy, gluten, soy or sugar. The “Honey, Bee-Ware” episode reminded me that there is a non-profit group in the U.S. that is trying to counteract the stupidity of the FDA and EPA and make us smarter consumers. Now that I think of it, I like the idea of not dipping my apples in a bowl of Roundup before chowing down on them. I try to buy organic when I can. I have already changed all of my cleaning products to be environmentally-friendly, and 90% of my cosmetics have been changed as well (I just have one eyeliner that I have a hard time giving up just because it’s the only one for me that doesn’t smudge, which is important to me because it makes up for the eyelashes I’m missing).

I made these changes about eight years ago after I wrote a paper and gave a presentation on the Environmental Working Group‘s database “Skin Deep” (http://www.ewg.org/skindeep/). I still have a hard time convincing people that they can find great stuff for their teeth and skin and hair that isn’t going to give them cancer or screw up their hormones, but I keep trying.

I was thrilled to see EWG add a cleaning database about four years ago: http://www.ewg.org/guides/cleaners

Lastly, EWG has a handful of databases dealing with food issues. Think of it as an adventure to be the best you can be, like you’re in the food army or something. http://www.ewg.org/foodscores
http://www.ewg.org/foodnews/
http://www.ewg.org/research/ewg-s-dirty-dozen-guide-food-additives

Me and Alan

This is just a tough week. My health stuff has been forcing me to push everything else aside – because as some of you know, you only have enough energy for one thing each day, and that is if you are lucky.

I had to go into the surgeon’s office today like I have done every single day since last Tuesday to get my wound checked and repacked. I’m actually a “super healer” and for that reason also very rare. My body immediately goes to town on closing up wounds and building scar tissue – collagen – so it’s yelling last call and shutting the doors before all of the riff raff has exited. The downfall to that is that my body trapped bacteria in its rush to seal everything, which is why the doc had to make hamburger out of my ass. This is also the reason why, when my body figures out that it can’t physically break every shunt, it resorts to clogging and strangling the drainage catheter. I don’t make keloids. However, I have a huge wad of scar tissue on the right side of my brain left over from the cisternoperitoneal shunts I had implanted there. If I press on that side of the skull, I move the whole mass and it’s very uncomfortable, as if I am moving strings that are attached on the inside of my scalp that reach down into my brain.

While I was getting ready to go to show my ass yet again, I was catching up on the news, and so saw the announcement that Alan Rickman died from cancer at 69. Like Bowie, he was another Brit with loads of talent, adopted and adored by us fickle Americans across the pond. This seemed like another abrupt loss that we didn’t see coming – I mean, some people shouldn’t ever die, right?

Like a lot of people in the U.S., my big intro to this man was the role of Hans Gruber in “Die Hard.” He was such a good badass. I didn’t want him to be killed off. I wanted him to return for every installment of that franchise.

About seven years later while I was living in Albuquerque, my roommate introduced me to “Truly, Madly, Deeply” via a VHS tape she had in her vast movie collection. It was a role that allowed me to see past his villainous past and embrace his gentler side, and roll around in his deep voice like a dog rejoicing in sunshine and grass. If God actually existed and had pipes, I do believe that we would hear Alan Rickman speaking.

In 2003, I moved to Arizona without knowing a single person, without having a place to live and without having a job. (Things were really different back then, kids!) A few weeks after I landed, “Love Actually” was released to the theaters for the Christmas holiday. I didn’t have anyone to go with, so for the first time in my life I went to a movie by myself. I’m glad I did – I liked the movie enough to buy, which rarely happens. But Alan was part of the ensemble cast. He played well the role of a man who was befuddled by the temptation placed in front of him and who ultimately could not rise above.

I know this makes me an oddball (judging by just how popular the Harry Potter series has been), but I could never get into the Harry Potter movies. So many people are mourning the loss of Professor Snape; I will instead choose to remember Hans, Jamie and Harry.

Me and Ziggy

 

Today may have been the first time that I have listened to “Ziggy Stardust” in its entirety since 1993.

David Bowie and I have a pretty solid history. When I was little, I loved the song “Space Oddity.” I don’t know if it’s because I’ve always felt a little out of place in my world, as if I’m living on a different plane than the general public, or quite possibly that I’m an alien trapped in a human body. Whatever the reason, I would sing that song over and over; I have always used singing as a sort of comfort to myself, like the proverbial blankie or stuffed animal.

When I was in elementary school, MTV was born. Our dad was pirating his cable from a neighbor’s wire and we had access to this fabulous station with music and stories 24/7. I loved the really creative videos that gave me interesting visuals to go along with the musicianship. It was the first time I actually saw David Bowie in motion thanks to his new wave pop tunes “China Girl” and “Let’s Dance.” In fact, the “Let’s Dance” album is the first one our father purchased to play on his brand new contraption, the CD player. If we jumped hard enough we could make the CD skip like a record. Our father’s side of the family was blessed with innate rhythm, so we would often have dance parties in our living room, sometimes including our aunt’s five children.

In high school, I joined one of those CD clubs – you know, buy one full price and get 11 more for 1 cent? I got a best of from Bowie that included all of my favorite songs up to that point. It got heavy play. I was listening to it during my first week on Mackinac Island for my second season after I had just turned 19, when I lived above the busiest bar on the island and we had a lot of people coming and going. That is when a guy knocked on my door, started making out with me and coaxed me out of my knickers and my virginity. “Ziggy Stardust” was the song playing when it all went down – I distinctly remember the guy drunkenly saying that he loved that song. I loved that song. Unfortunately, because I had resolved to just getting my virginity out of the way and not trying to make it a movie-type romance, it was not a good experience. He was very rough. He bruised me deeply, my lips were purple and cut. I had bruises all over my ribs, ass and thighs. He was drunk and he doubted it was my first time. My first sexual partner did not care for me or about me, and I paid the price. Well, me and Ziggy. I stopped playing that song.

When I was 22, I had been living in New Mexico when I flew back to be in a friend’s wedding. It was the last time my father and I saw each other. He had cut my hair (the “Rachael”) and we were chatting about his Bowie box set that he received from a client the week before. We also talked about this new cabin Dad had purchased two months prior, and how Dad intended to fix it up and retire there, but that he didn’t think he would see retirement. I told him frankly that I didn’t think he would live to retirement either. He asked me why I said that, and I told him that I couldn’t envision him as an old man, that everything went black when I tried, like a newly washed chalkboard. Three weeks later I had to fly back to Minnesota because Dad died of a heart attack – at the cabin he wanted to retire in. He had gone up there for a weekend by himself to work on a few things and maybe do a little duck hunting. From what we could tell, he entered the cabin, set down his pack, laid down on the bed and died. He was discovered by the local sheriff when my step-mom called for a wellness check after Dad didn’t return home at his scheduled time. The Bowie box set is one of the first things my step-mom thought to give me when she was dividing up mementos between us four kids. She knew Dad and I loved our David Bowie.

I believe in a continuation of the soul when we die. Relating to that, I have a question that I suppose will never be answered, but I’ll ask it anyway. When famous people die, and are so universally mourned, does their soul visit every single person every time they are thought of? Souls must be infinite, but is their energy ever depleted by the millions of times they are tugged and pulled by our sadness? Or do they only have a connection to the people they loved in their lives?

I’ll leave you with my favorite Bowie song, which is his collaboration with Queen. I get goosebumps every time I hear it.

A Prayer Before Dating

Today, a good friend posted a surprising quote from her Christmas Eve church service: “Lord, touch us where we need to be touched.”

Amen to that!!! I mean, that’s almost exactly, word-for-word, the prayer I say before each date. Well, okay, mine is a little more elaborate: “Lord, please let him have clean teeth, pleasant breath, an unsloppy kiss, magic hands, a great personality and recently bathed bits.”

This holiday is a bit rough. First, I’m no longer in Arizona and gathering with friends to feed ourselves silly and play games like Cards Against Humanity. They are all my “other” family. I have hosted as few as one and as many as ten friends at my house, depending on if they had already been extended an invitation or they had family in the area. I have always made sure they had presents under the tree. I try not to think about this or any aspect of my former life, because it inevitably causes tears.

There is also a gap with our sister passing in July. Her absence also brings tears. This is the first time in about 23 years that I, my other sister and our half-brother are in the same city around Christmastime, and it would have been perfect to have our oldest sister here too. We are still scattering a bit – our brother is heading back to Wisconsin to be with his girlfriend and her family for the holiday. I wonder if we will all ever be in sync; none of us has experience in how to act like siblings as adults living in the same area, and I watch friends who have mastered this skill with envy.

And of course, there is no soul mate under the tree. Santa baby, what the hell???? It’s too soon for me to be able to tell if the person I recently met is a match; we have a few strikes, including my inability to drive, our distance (50 minutes on a good day) and his recent purchase of a puppy (since I’m deathly allergic). He has a good heart, though. Right now we are enjoying each others’ company.

This is a difficult holiday for a lot of my friends who are struggling with illness, loneliness, isolation or job loss. I don’t have any words of wisdom to pass along. All we can do is get through the next week. Maybe what we have wished for this Christmas – a job paying a living wage, gatherings with friends, a loving partner – will show up, but just a little late.

Below is a picture from my house in Phoenix when I had two living rooms and decorated two Christmas trees. Again, tears. God, I loved that house and the life I made in Phoenix. But happy holidays to you, wherever you may be.

2ChristmasTrees

Initiation to Rare Disease – Not My Own

Back in 2005, I worked in the tech department of a very large mortgage company whose CEO was the tannest, slimiest, shiftiest man I’ve ever seen. The tech department was overrun with men, so naturally, the few of us women tried to bond as best we could. One such woman, whom I will call Blondie, was a trip. She was born and raised in an Eastern bloc country and knew how to speak her native tongue and Russian first, so English was a third language.

In meetings, of course, we were outnumbered greatly by the guys. I remember our group being called in to discuss something. Blondie said, “Well, let me stick my chest out and say this.” Of course, she meant that tricky little saying, “Let me get this off my chest.” There were a few snickers around the room, so I leaned over to her and said, “Blondie, you mean, ‘Let me get this off my chest.” She nodded and practiced saying it a few times. When she spoke up again, she said, “Let me just take off my shirt and say this.” There was no hope of recovering after that one, the whole room lost it.

Blondie was a great person to socialize with. She was unafraid to talk to anyone, whereas despite my theater training, sometimes I hang back (but I think it’s mostly my desire not to be seen as a bore or a weirdo). It was because of her that I went to a swing dancing event and met a woman who introduced me to her good friend whom I dated for four months.

It was a big event with a 20-piece orchestra and every seat in the ballroom was filled. We were seated at a large round table with about twelve other guests, and it wasn’t long before we were all spinning around the dance floor. Blondie started talking to K. first when we were resting between songs, but then K. and I started talking. I revealed I was single and having a hard time with dating because I had to wear wigs to “pass” in public. K. excitedly told me that she had the perfect guy for me, someone who had been her good friend since childhood.

Never one to pass up an opportunity, I told her I was game. She warned me that her friend had a pronounced limp because he had a rare disease – neurofibromatosis, or NF – and he had many surgeries and successfully beat cancer. I didn’t mind at all. I was more worried about finding someone who was compatible emotionally than whether he could chase me across a field.

The Gambler and I started trading emails, and then chatted on the phone. He decided he didn’t want to waste any time meeting me, so he talked me into bringing my friends who were visiting from England up to the interactive zoo in the extreme northwest of Phoenix. This was also in July in the dead heat of summer. So picture this: my cold-weather friends are tagging along with me in 115 degree (F) heat to maybe pet a giraffe and meet this stranger.

The Gambler was very friendly and used to talking to people he didn’t know well. As it turns out, he was the NFF (Neurofibromatosis Foundation) ambassador for the region, and had traveled a few times over to Europe as well. So my friends thought he was friendly and seemed a decent sort.

The Gambler and I had our first relationship test very early, at about the two-week mark. Neurofibromatosis causes tumors to grow on the ends of nerves, so he had had many, many surgeries at that point to cut the tumors off of the nerves. The tumors can be benign or cancerous. This round of surgery, however, resulted in about 15 benign tumors being removed in both forearms.

I was in the waiting room during the surgery. I helped him get dressed and also with wrapping up his surgical sites so he could bathe. I scrubbed his back. We hadn’t even been intimate at that point, but as a nurse, you are not supposed to be checking out someone’s junk, so I did my best to avert my eyes.

Because I immediately started spending a lot of time with him, there were things I learned that may have not come up for a few months in a relationship that progresses a lot slower. The first is that he was hooked on gambling. This was back in the day when you could play online poker and bet real money. It was how he brought in extra income to supplement his disability pay. The second is that he was a sports whore. He actually rigged 4 TVs and 2 computers so he could simultaneously watch multiple games – basketball was his favorite. The third is that The Gambler’s family was very, very dysfunctional. His father was this giant of a man who drank all day and all night and beat his mother. They lived in a subdivision for retirees and owned a golf cart, and his dad would get fall-down drunk, take the family dog and go for a ride. He had already killed two family dogs on separate occasions from turning the cart over. His mother always tried to not make her husband mad. They kept getting more dogs.

Obviously this family dynamic greatly flavored how The Gambler interacted with me. He would fight to the death to get his way, whether it was where to eat or how to spend our free time. He would bully me first, then he would bargain. The Gambler would tell me that I had to do what he wanted to do because he had NF; if that didn’t work, he would tell me he would make it up to me later. All of our timelines revolved around sports schedules and online poker tournaments.

I learned a lot about the NFF and about rare disease in general. Networking with other people, grant writing and summer camps were all foreign concepts to me, but after driving him to a few locations, I started connecting with the value. The Gambler’s cause became my cause, at least in becoming more aware of the disease and the many manifestations. I know of two celebrities who (probably) have it and that’s the first thing that pops into mind when I see them – then I spend most of a movie looking for the signs, now that I know how to spot them.

The Gambler begged me to go shopping with him for clothes in anticipation for his next European trip for the NFF. He had been wearing size XXL, but really, his body was more like M. I talked him into a compromise so that his pants and jumpers weren’t dragging on the ground.

When he returned he told me that all of his friends made fun of him because his clothes fit, so what I made him buy was embarrassing and he was never going to take my advice again.

I didn’t feel like I was in a loving relationship at all. I called The Gambler to end it, and of course he tried to bully me into staying with him, then tried bargaining. He told me we could break up but that we should still go on our Las Vegas trip that we had planned. I kept telling him that I wasn’t interested in acting like a couple if we were no longer together. Finally I set a date and time for us to meet so I could get my belongings back (I had lent him an air mattress for a guest, plus various other items like sheets and towels). The Gambler rescheduled the meetup at the last minute a total of four times. Each time I had driven in rush hour traffic an hour each way. The fifth time he didn’t call and didn’t show, so I sent him an email saying he could keep everything because it wasn’t worth me chasing all over the city. Oh, but he tried to get me to come back to him, calling me constantly.

I kept the emails. I keep everything! This was our exchange:

ME: You and I are no longer dating.  This means that we won’t be going to Vegas together.  My decision to not be in a relationship with you is NOT your queue to follow in your parents’ footsteps and alternately bargain with and bully me into changing my mind.  The fact that you are not accepting of my reasons and choose to completely ignore them prompts me to follow my instincts and say that we should NOT meet up.

HIM:  you are sooooooooooooooo wrong about everything

what do my parents have to do with this anyway. you should not even mention them

bullying you into being with me  oh come on. you just missed out on the greatest guy in the world. you will regret this. i already regret opening up to you and sharing things about myself that only very few have ever known and will know for that matter. as from a famous movie wasting hugs and kisses on you too, when in the end it ment nothing to you. you have only just begun to see an ounce of me. as for your safety lol come on there is not a mean bone in my body. you hurt yourself more by not being with me. i am not like your other boy friends and i am a lot smarter and mean when it would come down to things like that. but truth of the matter is by doing something to you or your prized stuff would just bring me down to your level, and that surely is a place i don’t want to be. i rather have cancer again rather than be down there!
when i get home we should have dinner and at least be friends. we have tickets to use anyhow. i thought you should know to i have already taken 5 lessons in dancing to surprise you (even before marcos) k. just slipped up the surprise, and i like it so i am sure we are going to running into each other anyway at whatever dance events that i might like to go to.

i am not going to hurt you or your stuff. again like i said it would just bring me down to your level and that’s a place i don’t want to be because from all this and looking back on it i can tell already that’s a place i don’t want to be. but when we were together i would have gone there for you in heart beat. i am sure the person your with now would appreciate being told now if you are going to hurt them in the end. i also can assure they wont be half of what i am.

i hope in the future when,who,what (ever) you decide to be with, you don’t hurt them as much as me because it will come back to you i will assure  you. if i do see you with some one i will pray that you don’t hurt them. then again maybe it will be your turn whether or not they want to be with you.

hope ur new job is going well and hope all is well for you
hope your health is fine too

best wishes and will talk to you soon

ME: Read your words.  Maybe it will take a few years for what I am trying to explain to you to sink in, but I’m going to try one more time.

I mention your parents because your dad drinks, beats your mom, begs her to come back and says he will quit drinking/beating her, etc., and she takes him back.

If you go back and read your words to me, you tell me that you hope that I get hurt, that I’m the lowest of the low and you would rather have cancer again than to be on the same level as me.  THAT’S THE BULLYING PART.   Then immediately after that you say let’s be friends, and no one is going to treat me as well as you do, and you would have done anything for me.  THAT’S THE BARGAINING PART.  You’ve watched this cycle with your parents happen over and over and somehow you have come to the conclusion that this is acceptable behavior. I, on the other hand, do not allow my friends to say horrible things to me and then try to win me back.

And what have I done to be the scum of the earth? I’ve acknowledged that I honestly couldn’t live with our differences and decided to end the relationship. I didn’t stay to hope that things would change.  I didn’t stay to make your life and mine miserable by fighting with you or resenting you for things that I ultimately couldn’t tolerate.  Instead of sitting back and saying “I don’t understand, but I respect your feelings”, you have discounted everything I’ve tried to say and have said some very nasty things besides.

I’m tired of fighting to be heard, which I’ve had to do throughout our time together.  I still believe you have a bright future and I wish you a happy life, but I will not be a part of it.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Three years later, he sent me a friend request on Facebook (I declined).

I snooped around and discovered that he was engaged to a psychology student. I figured either she wanted a project or she was fucked up herself.

In 2012, The Gambler succumbed to cancer. I have no idea if he married that young woman.

The moral of the story? We are, after all, humans first, and NOT just our diseases. I don’t have to stay with someone who doesn’t treat me well, and neither do you. And just because a person has a disease does not mean that he or she cannot do the work to learn to be a better person and break some bad familial cycles.

 

 

 

Good Thing I Had Chocolate Handy

Today was pretty rotten. I feel like I am writing the same thing over and over again too – that yet another doctor thinks I’m more trouble than I’m worth. This time it was my PCP (primary care physician, for those of you lucky enough to only need one every five years). We had traded emails at the beginning of this month about what I needed at the next appointment – today – so I came prepared with my list and a sizable stack of records in case they were needed.

We quickly covered maintenance meds and labs. After that, I asked her first if she would be able to send a quick note to the company managing my medical assistance to see if the state would consider negotiating prices directly with Johns Hopkins so I could be seen there. Immediately she got pissy and told me that she doesn’t write letters for anything, then asked me repeatedly what I hoped to accomplish with a letter. I explained again that the state would consider my case (since I’ve already been turned down by a dozen doctors at all of the big institutions as well as various offices in MN), and that the financial adviser from Johns Hopkins indicated that other people from states other than Maryland have had success under the same circumstances. She then asked me what I meant by “turned down;” when I told her that the Mayo wouldn’t even see me, she snapped at me that she knew that, but what did I hope to accomplish? Jesus H., I was really having a hard time dealing with her nastiness.

Then I brought up submitting my case to the NIH, and she said no way, get one of your specialists to do it. I said, “Get one of the specialists who refused to take me as a patient and told me not to come back?” Then she said she couldn’t do it because there was no way they were going to accept the recommendation of a PCP. I pointed out to her in the directions that they wanted the submission to come from the PCP. Then she said she didn’t know me well enough, to which I replied that she could ask me anything, and I brought records to back me up. She told me there was no way she was going to read my records. I gave her a summary I wrote, and she proceeded to mock everything I noted – quoting what I entered and then said, “What is this??? You can’t write this!” when I said things like, “The neurosurgeon opened up my abdomen and noticed it was red and swollen, probably from a reaction to the catheter.” I told her I had a lot of abdominal pain, and she said, “From what???? Do you think your catheter is coming out of your abdomen or something?!” I told her no, but the horrible pain started the very first day the original shunt was placed in 2011 and it has never gotten better, and the neurosurgeon didn’t notice until two years later that he could actually see the physical reaction with his own eyes when he didn’t have a general surgeon assisting him. Finally she said that I needed to make another appointment with her, rewrite everything, and if she liked what she saw, she would sign it. She also said I wasn’t allowed to talk about anything else at the next visit.

Yeah, I get it – doctors have a lot of pressure on them – but she had me in tears. I didn’t understand why she was so shitty about the stuff I asked her for, especially since we traded emails on it.

After I got home and had some chocolate (yes, I ate my feelings), I started the search for my next PCP. I found someone at the U of MN who supposedly likes complex medical cases, so I’m just waiting to get a call back to see if she will add me to her patient roster. As luck would have it, she used to work for the NIH; it would be nice if she stayed friendly with some of those contacts.

At this point, my team of doctors is pretty sparse. I have a GI doc who is going to do a biopsy next week of my esophagus; I have an OB/GYN for my lady parts; I have a dermatologist who is going to track any skin changes since my family has a solid background in melanoma and squamous cell carcinoma; and I have an immunologist who prescribes me Epi-pens and inhalers. The problem is that none of these doctors can actually help with what has been forcing me to stay in bed for these years.

This is just one of those days where it feels really fucking lonely to be me. The Carousel of Crap rides again.