#spoonie

Why I Don’t Pray

Posted on by akiwifreund

On Twitter, amid the hundreds and hundreds of posts flying around on my feed last night, one stuck in my mind, and it still galls me. It said something to the effect of, “Even if you aren’t religious, you can still offer prayers in support of Paris.”

I didn’t want to get in a war of words (or 140 characters or less) with a stranger, especially when there are bigger, badder things to be worried about. However, it’s enough of an issue with me that I would like to point some things out.

First of all, prayer is an integral part of religion. Any religion. If I’m not religious, that means that I don’t believe in religion, and therefore I don’t believe in prayer.

Second, religion is based on arrogance. Let me qualify that statement by explaining that every person thinks the religion they follow is the “right” religion, and believes that every other religion is the “wrong” religion. The monotheistic religions we hear about the most – Christianity, Judaism and Islam – are only a portion of what peoples’ belief systems are based upon. There are something in the neighborhood of 4,200 religions being practiced today. Which one is right?

Third, religions are created by humans. I’m sure you’ve heard of people saying they are going to “create their own religion” or “start their own church.” This is how all belief systems are born. Each faction comes up with its own rules and rituals. Think about Scientology: It was created by a former Navy guy who wrote science fiction. I mean, c’mon – what the hell is a “space opera” anyway??

Fourth, religions rely on mystery and lack of education. Leaders are always touted as knowing more than the rest of the followers. They are always revered for being more “blessed” than everyone else too. This is how religions continue to thrive. Think about the infamous Warren Jeffs and his “flock” – they all believe that he is some sort of prophet, and they hang on his every word. None of the kids growing up in the group know how to read or write properly and have memorized church elders as their only education. Obviously this is a famous group often singled out for its cult-ish behaviors. Pull back a little and look at all of the religions with the same eyes, and realize that leaders and organizers rely on the followers not questioning anything, or if they do, always circling back to the idea that the leaders know best. With all of the scientific discoveries we have made in the past century, how can anyone still believe in a virgin birth?

Fifth, believers tend to assign human characteristics to the objects they worship. For example, all of us have heard, “God will be angry” or “God will be sad” if we do certain things. Says who? We do. That’s right, humans.

Sixth, non-believers are not amoral. I don’t steal, I don’t cheat, I don’t kill other people or intentionally harm other creatures. I live a pretty upstanding life, and that is without following one or two particular religions and relying on them to be my conscience. Here’s something interesting: In some areas of South America, before Christianity was introduced, there was less crime because everyone lived under the same code and worked together to make a harmonious community. It was truly shameful to steal or kill. After Christianity, crime became more prevalent – because they started believing that “God would forgive them.”

Seventh and last, what has prayer done for me? People offer to pray for me all of the time, and I thank them because it makes them feel better. I’ve been signed up for continuous prayer circles, many times, with or without my knowledge or consent. But this is what it boils down to: If I get better, then it was “God’s will.” If I don’t get better, I either didn’t believe hard enough, didn’t pray enough, or it was “God’s will.” With either outcome I have no hand in whether I get better or not. Honestly, I think that the idea of praying has allowed people to become lazy. They can post on Facebook or Twitter that they’re praying for the people in France, or for praying for starving children in third world countries, or for gun violence to end, but then they don’t actually do anything. They think it’s enough to say that they’re praying and it magically elevates them to being better people.

Do I believe in God? That topic is best saved for another time.

On Love and Loss

Posted on by akiwifreund

“The Anatomy Bequest Program at the University of Minnesota is is a whole body donation program.” As my family found out on Tuesday night, it is also the largest in the world of its kind. http://www.med.umn.edu/research/anatomy-bequest-program

I have always grappled with organ donation – but only because I’m not able to, ever. I want to. But thanks to all of this autoimmune stuff swimming around in me, and my eyes being damaged from the pressure being placed on my brain from this mystery disease, there isn’t any part of me that is safe to transplant into another person. This anatomy bequest program seems like the next best option. I envision baffling some of the medical students with my weird disease – or maybe they open me up and immediately figure out what the problem was, and it was nothing that could have been detected with scans. My brain will be sliced and sectioned and labeled for its “A-ha” moment, and I’m perfectly fine with that.

I sat with my sister and her little family, and we knew our brother-in-law and another family member were somewhere in the audience. We were in an auditorium on the U of MN campus to watch a show put on by students and staff as a thank you to the family members of the people who had passed and donated their bodies at death. I knew it was going to be a tough night. I could feel the sadness rolling off of the people around me and I immediately started choking up. I had tears during the first performance, a pianist playing a Debussy piece. A little of the tension was relieved when it was announced that a trio was going to perform a Lynyrd Skynyrd song and an old hippie in the section next to me let out a gruff and enthusiastic “All right!”

The performers took a break and a slide show began. Each donor was being shown in pictures chosen by their spouses or families, with Joni Mitchell’s version of “Both Sides Now” playing. I knew our sister was going to be there on the screen very early on alphabetically and the tears came again. After her time in front of the crowd, I just closed my eyes for a while. People around me were sobbing quietly. I have no idea how recent their loss was, but it really doesn’t matter, because we were all there for the same reason. We loved our people.

The performances continued after the slides made it through the L’s; one poetry reader encouraged us to hold hands with the people next to us while she read her poem about hands. I could feel my older sister and I freeze at the same time, uncomfortable with the suggestion. I leaned over to my sister and whispered, “I’m good.” We weren’t the hand-holding types.

After more performances, the slides continued with the rest of the donors. I’m not sure when it started, but as each picture was displayed, these little groups of people would clap when their person was shown. Some whooped a little; one woman yelled out, “We love you, mom!” There was more sniffling and sobbing, more tears. My sister and I were surprised to see a former classmate’s picture at one point – she had died only about 2.5 months prior from breast cancer. I imagined that her parents were somewhere in the mass of people, also proud and incredibly sad.

It turns out that our brother-in-law was just in the next section and so after the auditorium started emptying, he came over to us. He has always been a jokester, so it was especially heartbreaking to see him openly crying. He apologized when he hugged me, which is what we all do when we think we have to hide our pain. He is the one I worry about the most. He is now alone in his big house, a home that has so much of our sister still in it. She had MS and was confined to a wheelchair for most of their marriage, and the house was modified to accommodate a wheelchair and scooter. He cared for her, turned her, carried her when she needed help getting to the bathroom. They were each others’ best friends. He couldn’t even take much time off from work to mourn her because he had used up all of his allotted time to make sure she was comfortable in her last two months while cancer took over.

I know our brother-in-law mourns deeply. I am having a hard time finishing this post because the grief keeps crashing into me in waves, and I have no doubt that he feels it more than any of us. My singular wish for him is that he will be able to find someone to love again when the time is right. I don’t like the idea of him holding onto the memory of our sister for the rest of his life and turning away from another great love, and I don’t think that is what she would want for him either.

I am grateful to the U of MN for having this program that allowed us to come together and celebrate the giving and joyful heart of our oldest sister.

Netflix ‘n Chill

Posted on by akiwifreund

Minnesota is a pretty great state to live in right now. There’s lots of resources – especially in the Minneapolis/St. Paul area – and a push towards smarter and greener living. Unemployment is super low. I have forgotten what it’s like to be around nicer people (rather than worrying about being shanked), so I find myself thinking often, “Wow, that person is so nice!” Don’t worry, I know about “Minnesota Nice” – but usually I’m on the giving end of it, not the receiving end. On paper, it would appear that I wouldn’t have any trouble at all finding a match, because there are a good number of people with shared values.

However, I’m that person. I can’t go out on dates. I can’t join someone for a bike ride and a hike. I can’t say that I have to work until 6 pm, and then can we meet up for dinner later? I can’t go out on multiple dates with someone and then decide he’s not a match for me, and never have him know where I’m living in case he turns out to be stranger danger.

My only option left, really, is to tell dates they can come over to my place to, you know, watch Netflix and chill. Except every one of them thinks that I want to bang. I don’t!! It looks bad, I know. My apartment is a studio so the couch I have for visitors is in very close proximity to my queen-sized bed, so even if I told a date that I didn’t want to have sex, THERE IS MY BED, calling like a siren song.

I want to go out with men who are active and enjoy movies, wine tastings, art festivals, live theater and traveling, but those are the ones that do a crab crawl backwards away from me. Instead, I get messages on OKCupid from guys like Alex (age 28), who wrote two sentences to me, didn’t answer any of my questions, and then a week later said, “Hey, how about after work we have a lazy evening on the couch and watch shows?” I said, “You mean, ‘Netflix and chill?'” He said, “Does it sound better if I say that?” and I said, “No. I’m not interested in sextracurricular activities.”

On the flip side, someone whose junk has been up close and personal texted me a hello and asked what I was up to, then said that watching a movie sounded really nice. I asked if that was code for Netflix ‘n chill, and he said, no, he really did want to veg out and watch a movie. See? Sometimes men can act like normal human beings and not try to hump everything in sight. I’m guessing we have to put you on a 60+-hour-workweek first, though.

So, anyone wanna come over for Netflix ‘n chill, but not?

How Now, Brown Cow?

Posted on by akiwifreund

I saw my 42nd doctor today. I always start my introduction off the same way for everyone: “So, are you up for a challenge?” I get the same reaction every time, like there is no way I have something they haven’t seen yet. I feel their need to pat me on the head and tell me I’m being cute, and they’re waiting to smirk and say, “Oh, it’s just a migraine, sweetie.” But then they start to sputter, or stutter, or ask me the same question six or seven times. Then they leave the room. Then they come back in (as if they haven’t just gone into their office and said “Fuck” a few times, noiselessly, before putting on their game face and walking purposefully back into the exam room). This doctor was no different.

He said, “I just don’t know what you have. I have never seen this before, but you know, I’m just a neurologist. I wouldn’t know what to do with you.” I said, “Study me.” He said, “I wouldn’t know what to study.” I said, “But these are neurological issues. Someone has to be willing to think outside of the box, like keeping me upright for scans instead of laying down.” He said, “But I don’t know how to help you. I think you should go back to the neurosurgeons.” I said, “Okay, can you talk the neurosurgeons at the U of M into taking my case?” (He is, after all, a University of Minnesota neurologist.)

He said, “I’ll just send them a referral like normal.” But this isn’t normal. None of this is normal. I wish that I could make my surprised face now (even if it’s an act), but, you know, my face is half paralyzed. I really had to fight the urge to have my medical transport person make a pit stop at a bakery so I can buy a chocolate cake to put my whole face into in the privacy of my apartment. I’m past crying about it. It’s just exhausting. How am I supposed to carry on without even a small glimmer of hope? The doctors tell me not to give up. That means “fight,” right? But they don’t want me to fight with them, just the ever-elusive “someone else.” I often wonder what they would do if they were me.

Today wasn’t a total loss, though. My sister and I went to see a dermatologist at the same time early in the morning and then made a pit stop at her place to pick up her two dogs before she went to work, and as usual, the smaller female managed to get loose and run free. She’s some sort of terrier mix with short, wiry hair and sweet brown eyes that my sister and her husband got the day I moved to Minnesota. The male is some crazy mix of beagle and who knows what else- maybe Saint Bernard? – he’s got kind of a big body but pretty short, stubby legs, and the saddest face ever. The male also does not move fast for anything. When he sees me, he knows I’m going to rub his belly, so he doesn’t even bother coming over to me first. He just throws himself on the floor and raises his front paws, like it would be way too much effort to walk a few steps, and I definitely should not miss out on scratching his armpits. So while my sister was trying to lure the female back with treats and we saw her bounding through some brush like a jackrabbit, the male saw me from about 50 feet away and launched himself towards me near the parking area. I swear to you I have never seen him move like that with his ears flapping in the wind before, and I probably never will again. The female heard me calling for her and she buzzed right past my sister and threw herself down for a belly rub too. I really wish I could have pets. I’m lucky my sister works across the street and I can go get some fur therapy when I have a crappy day. They were both rescue dogs, so it warms my heart that they love me enough to come to me too.

Today my sister drove my car so that I could clean it out a bit before listing it for sale. Let’s be clear, here: I don’t want to. I love my car. I did a lot of research before I bought it, and it has all of the features I wanted and nothing I didn’t. I had planned on keeping it for at least a dozen years and so made sure it had the best possible engine for its price point. I got a platinum extended warranty. It fits in every parking space. It’s a hatchback, so even though it’s in the car category, it sits up higher like a small pickup – that means it’s super easy to get in and out of. I could go on and on. Cross your fingers for me for a quick and successful sale, because girlfriend’s gotta live off that money for the next twelve months, know what I’m sayin’?.

Front

You Get the Seal!

Posted on by akiwifreund

BlogSeal

I have gotten behind in my list of things I wanted to accomplish this week, but I couldn’t let this go anymore.

Thank you to the bloggers who put their hearts out there, all naked and vulnerable, for us to see. And I know that I’m not supposed to do this because it’s supposedly against the rules, but first and foremost, I nominate My Shadow Weighs a Tonne, https://chronicallychronic88.wordpress.com/ right back. I’m a loner, Dottie, a rebel. You matter and I’ll repeat that as much as you need to hear it.

Please also take the time to read these blogs:
http://ilivebreathe.com/ – As I Live & Breathe
https://hopeforheather.wordpress.com/ – Hope for Heather
https://dawner1530.wordpress.com/ – TBI Journey
https://klregister.wordpress.com/ – The Ninth Life

Each blogger has a unique voice and adds value to my days in their own way.

I started this blog because I suddenly had absolutely no where to go – or more precisely, could not go anywhere, but still felt as if I had something to say, and good grief, so many stories to get out there. For years my dating life has been the running joke of my friends (mostly based on the fact that they could never keep up with who I was with at the moment). I can only hope that others are enjoying the ride and can laugh and growl with me.

The only advice I can possibly give is to keep writing.

Blogger Recognition Award Rules:

1. Select other blogs to which you want to give the award. You can not nominate yourself or the person who has nominated you.
2. Write a post to show off your award! Give a brief story of how your blog got started and give a piece or two of advice to new bloggers. Thank whoever nominated you, and provide a link to their blog. List who you’ve nominated in the post. Make sure to attach the award! (You can do this by right clicking, saving, and uploading the image above).
3. Comment on each blog and let them know you’ve nominated them. Provide a link to the award post you created.

What’s Going On With Your Face?

Posted on by akiwifreund

This morning I woke up and said to myself, “I’m going to urgent care.” Not for fun, mind you – I have been having horrendous heel pain in my right foot and haven’t been able to bear weight on it; I couldn’t even stand to rest it on top of my covers to sleep at night. Nothing has helped either, including ice and ibuprofin. Getting my shoes on took seven tries and a few tears.

I also had conversations I’ve had many, many times. The first was with the nurse. As we were talking about my meds and allergies, she said I was lucky to have a cane handy to help me with walking through this problem, and I told her I use one anyway because of vertigo, and warned her that I could feel the CSF pooling and starting to press on my nerves. I had been laying down until right before the cab picked me up, so I looked normal when I first hobbled through the door. She was watching my face as it became paralyzed and asked, “So you have Bell’s palsy, right?” I answered, “No, it’s not that, and it’s not Myasthenia Gravis or anything else you’ve heard of. It’s a rare condition without a name and I can’t get a diagnosis. But that’s okay, I really want to find out what’s happening with my foot right now, I don’t want to unload all of the stuff about my CSF issues on you.” We finished up with the vitals and she left to get the doctor.

He came in, introduced himself, and said, “I understand you’re here for foot pain. My nurse filled me in with that and gave me background on your really big issue. What’s going on with your face?” I explained briefly that it is yet undiagnosed, and that the latest of a series of rejections from the Mayo Clinic to see me came from a neurologist and a neurosurgeon stating that what I had is so rare that they wouldn’t be able to diagnose me or treat me. But then I said again, “It’s okay, I don’t expect you to do anything about that. I would really like to try to figure out what is wrong with my foot.”

I went through a couple of cab rides for nothing, it turns out. The x-ray didn’t show anything wrong with the bones and that’s as far as they could go with imaging. The doctor offered me a walking boot, but I declined – I don’t want to set my foot down at all because of the pain, it’s not a stability issue. Well, okay, that’s a problem too because of my vertigo and penchant for leaning to the right because of my imbalance, but we’re not trying to stabilize the bones. He also offered me some opioid painkillers but I declined those as well. His conclusion: it’s a nerve problem. Unless there’s something wrong with the soft tissue, which can only be checked by MRI. Either way, I have to wait until Monday to see what the next neurologist says.

For the entire time that I was dealing with that, I was getting bombarded by texts from a guy I met on OKCupid. He is an H1B transplant from India whom I will call Quiz Master. Quiz Master is quite a bit younger than me – 28 years old. At first when he approached me online, I was extremely cautious because I am not attracted to younger men at all. He seemed okay, though, because he was actually asking thoughtful and non-standard questions, and he wasn’t trying to get in my pants or show me his penis. Still, though, I knew that culturally we would be very different.

Quiz Master would ask me questions, sometimes four or five in a row, and I would try to answer as quickly as I could, but I’d only be able to type up one answer and he would throw another five at me. He would then say, “But what was the answer to the question I asked you before?” I’d have to scroll through a bunch of stuff to figure out what he was talking about. It was very tedious. And then he’d say, “Now you have to ask me something,” while I was still trying to answer his questions that he insisted that I answer. Sometimes he would message me days later and say something like, “I’m still waiting for your answer.” A couple of times I had to tell him I had no idea at that point what he had asked because we had moved forward with the conversation.

Against my better judgment, I agreed to give him my cell number, because, again, he wasn’t trying to get in my pants. Quiz Master asked if we could meet, so I told him why I wouldn’t be able to go out on a traditional date, though that would be my preference (as opposed to having a parade of stranger dangers through my apartment). Quiz Master first told me that if I went to bed that night, every day that I got up I would feel better and better until I’m cured. I told him that applies to things like having a cold, but has absolutely nothing to do with what I have going on. Then he told me that I had to be positive and that if I keep up my hope, I would be fine. Rather than telling him to screw himself, I told him that he should try that experiment, but that his mission was to make his eyes turn from brown to blue. If he didn’t succeed, then it would be his fault for not hoping hard enough.

So Quiz Master said fine, let’s not talk about that anymore, and then he proceeded to bombard me with questions again. I think he was really embracing his role as an enthusiastic questioner way too much, because he would ask things like, “Are you different from when you were little? Why and in what way? Do you think growing up made you think of things different? How do you think you think different?” (I’m slightly improving the grammar he used – you get the picture.) I finally asked for a break because I really don’t like to text. Quiz Master said, “Oh, but we’re getting to know each other. You are doing fine.” That really grated on my nerves because I wasn’t asking for his approval on my texting skills, I just wanted to take a break from the hundreds of questions he was insisting I answer.

Since Quiz Master also found out that I don’t work, he started texting me all day, every day, for about five days. If I didn’t respond right away, he would send me repeated messages saying, “What are you doing right now?” I started avoiding reading his messages for a few hours so he couldn’t see the “read” stamp. It was taking just way too much effort – he would hound me if I answered, and he would hound me if I didn’t. Then Quiz Master started asking if he could come over. Actually, he was asking if I could ask my parents if he could come over. I was starting to lose my cool. I said, “I don’t live with my parents and I never said that I live with my parents. Why do I have to ask my parents if it’s okay for you to visit?” Quiz Master said that he just assumed that I did because I’m single. <insert eye roll> Huge cultural gap right there.

Then he switched up his questions, saying that he wanted to play a “game” with me: we could say an actor’s name, and see if the other person is familiar with the actor and if they like them or not. I only tolerated about three actors from Quiz Master and then said I don’t like texting all day, every day, and that I wanted to take a break. Again, he told me I was doing “fine.” Finally, I told him that I don’t like to constantly text anyone for hours, and that I wanted to not text with him for a few days. Quiz Master said he wanted to call me then. I told him no, that I didn’t want to talk at that point either, and that I really wanted to get some stuff done.

Quiz Master waited all of twelve hours to start hounding me again. Did I get done what I wanted to do? What was I doing right then? How about a few minutes later? Why wasn’t I answering him???? He’s JUST TRYING TO GET TO KNOW ME. I’M DOING FINE. DID I FEEL BETTER? I MUST BE FEELING BETTER BECAUSE I WENT TO SLEEP. I HAVE TO TALK TO HIM. He was getting really, really demanding.

I started getting a feeling like I couldn’t shrug his arm off from around my shoulders, weighing me down like a yoke. I couldn’t breathe. In fact, I was suspicious that he somehow got lodged UP. MY. ASS. And I just do not enjoy that at all.

Quiz Master bombarded me with texts the next morning again, asking me exactly where I was and what I was doing. I told him that I was at a doctor’s appointment. He offered to pick me up so we could meet and visit. I told him no, I was exhausted and uncomfortable, and did not feel that it was the best time to meet. He told me that it would be a good time to meet. I told him no, I didn’t want to. Then he started asking me the stupid actors’ questions again and insisting that I ask him more questions. I told him that I needed to rest and I didn’t want to text anymore. Quiz Master gave me six hours, then started in again. I seriously wanted to kick him across a field like a football.

This morning, when I got the now-familiar text telling me to tell him exactly what I was doing, I responded by telling him that I no longer wished to pursue any relationship with him, and that I wished him well. Quiz Master then sent me 16 texts about how he was respecting my space but I had to answer him, and we were just getting to know each other, and he still wanted to come over – oh, and, did I think he was trying to have sex with me? I simply wrote back, “Knock it off.” His last two messages to me were that he was assured that he didn’t do anything wrong, and that he wished me a good day.

Obsessed much, Quiz Master? I suppose I’ll have to be looking over my shoulder for a while. Good thing I don’t have a pet rabbit for him to surprise cook for me.

Dating Whitecoats

Posted on by akiwifreund

Trying to find a doctor is a lot like dating. I’ve gone on a hell of a lot blind dates, and I’ve gone to a hell of a lot of doctors. I no longer get butterflies for either. I no longer have a feeling before I meet them of, “Maybe this will be the one.” Nearly all of them have broken my heart.

This week started off with a trip to a new rheumatologist. He was recommended to me by a friend whose mom had seen him, and he managed to treat her for much longer that she would have survived in the hands of another doctor before she succumbed to scleroderma. I read up on him and checked out reviews, and it seemed like he would be interested in solving mysteries. He was a tall, older gentleman with silver hair and a stern face, all business. After we began talking and I produced document after document for him, he began to get quieter, except for repeatedly shaking his head and sighing. I answered all of his questions from memory including lab results. Then he started stuttering. “What – what – what about your MRIs?” I told him the problem was that I had to lay down for them, and the fluid drains off almost immediately, so I don’t feel that they are getting a true picture of what’s happening when I’m upright. Then he started the, “Gosh, I Don’t Know” song.

He finally dropped his pen, turned to me and put his hands on his knees and said, “Has anyone seen anything like this before?” I told him no, and that I had seen a lot of doctors. (My count is 40 to date, including all of the ER doctors that have examined me.) He said it was obvious. Then he asked if I had tried the Mayo. I told him I had been turned down five times including the most recent try on October 2nd. He said, “What in the hell is wrong with them? They’re supposed to be number one in the nation for rare stuff like this.” I told him that I was going to try other avenues, including Johns Hopkins and going to the media to try to get my story out there with the hope that someone would be willing to take my case.

We went through the obligatory motions of the rest of the exam, where I put on a gown and he prodded my joints. I laid down for part of it and he watched my eyes open, and when I sat back up he saw the effects of the CSF pooling and forcing my eyes to droop shut again. I asked him if I could continue coming to his office, even if I saw another doctor, so that I could at least get care for my fibromyalgia because I didn’t especially care for the rheumatologist I had originally seen. He didn’t say anything.

When I got dressed again, he came back in and said, “I don’t have any answers for you. Try Johns Hopkins and see if they will take you on as a charity case since you have no income and medical assistance will only cover the state of Minnesota. I can’t help you.” He wasn’t unkind and I have heard that response many, many times. As I shuffled nearly blind down the hallway, I kept thinking, “This was just another waste of time. Waste of time. Waste. Waste. Waste.” I have gotten better about not crying after every unsuccessful attempt.

So, what’s next? Well, I’ve got to find a rheumatologist who will at least treat the fibromyalgia and not be a jerk. And I have to try to get my stories on local news stations and national talk shows. Everyone keeps saying, “Ellen! Try Ellen! She’s the best!” And I agree that that’s true and her show gives me lots of laughs and smiles, but I’m not sure she is even interested in taking me on, because I don’t have a happy ending. I have sent in a few submissions already. Thanks to the help of my former flame, I’m learning to navigate Twitter and have been trying to get the attention of neurosurgeons and neurologists around the U.S. I have also been tagging the Mayo in tweets about how they determined I’m “too rare” to examine and would anyone else like to take a shot? I’ve started following neurosurgeons and TV stations. I’ve tweeted Johns Hopkins repeatedly. They have a remote referral option that I have to pay for out of pocket, but honestly, I want them to be interested in my case, not just look at me as another number and dismiss me.

I’ve also started following groups that support rare diseases, either with research, treatment or resources. I managed to catch the attention of two of them and they will be publishing my submissions within the next few weeks.

After the unsuccessful visit with the rhuematologist, I sent a message to the neurosurgeon in St. Paul who told me, “Don’t give up. I know it’s been a long time and someone will be able to help you,” asking him if he could refer me to the University of Minnesota to see if I could be studied there. I was told that my case would be sent to the complex specialty care unit; yesterday I received a call and they stated that they wanted to get me in on Monday. I was surprised because I’ve never been able to get in with a specialist without having to wait 2-3 months, but of course I said yes. So I have another “date” Monday.

I also had to talk to my case worker for my disability appeal. I told her that she wasn’t going to see anything new from the rheumatologist, and that I was trying to get into the U of MN in the neurology/neurosurgery unit so I could be studied. She has been super nice to me, but it’s still her job to turn me down for disability. I know I’m going to get another call from Maryland telling me that my case is being rejected again because I don’t have a diagnosis – but it sure as hell isn’t for lack of trying. I’m trying! Seriously, slip into my body for a few weeks, or even a few hours, and you’d cry for your mommy and then tell me to take all my disability pay plus a little extra for having such a hard-ass time.

Finally, I’d like to say in closing: Screw you, Mayo Clinic. I realize that I’m not a wealthy billionaire and I’m not the Dali Lama, but you should take my case and figure out what in the hell is going on. As far as I’m concerned, you reputation for being the best for neurology/neurosurgery is completely undeserved. You just made my life 1,000 times harder. You were my worst no-show.