Send Up The Flares

It has been a really long time since I’ve logged into my FetLife profile. I didn’t realize it, but I had three messages waiting for me – one from about two months ago, another from four months ago, and the third from a full year prior. The one from a year ago I let slide. I mean, I did put in my profile that I don’t log on and that I’m going through a health crisis, and I can’t “play” in any way, shape or form. I did make a small adjustment to my profile, which alerted my friends and RELEASED THE KRACKEN.

One former spank party friend wished me well and told me that he had heard I moved to California. I replied that that wasn’t the case, I’m actually in Minnesota, taking care of some serious stuff. Then the guy who sent me a message four months ago hit me up again, this time with his instant message name and phone number. I replied that I was not looking to do ANYTHING, but that didn’t deter him; he said he would be willing to “give me a massage if I needed it.” Um, right, do bedridden women usually fall for that?

Then another guy whom I’ve played with at spank parties in Arizona hit me up to let me know he was actually currently in my city for work, and was I interested in getting together for a session? I groaned. This guy…he’s very, very, VERY focused on his kink. I like to have fun. It’s not the be-all, end-all thing for me. He carries a backpack with all of his tools. He actually has two pictures of me (not showing my face, only my red ass) on his profile. He’s totally into role playing, having me stand in the corner, punishment, the whole bit.

So I turned him down, because there is no fucking way I can do anything, including hang upside down, or put my stomach over his knees. The thought makes me cringe. I would be walking like a cat just getting out of anesthesia. And it would be painful, and not in a good way. So he asked me if I could be his chat buddy while he’s traveling for work: talk to him about discipline, spanking, corner time, paddling, etc. I’m rolling this around in my head, and first of all, this requires research. And time. And creativity. Probably some motherfucking Skype. A hairbrush (because wouldn’t you know it, I’m bald). It’s all I can do to peel myself out of bed to make food for dinner every day, and this guy wants me to put a lot of effort into keeping him happy and satisfied.

It takes a lot of effort to turn him down and I know I’m going to have to repeat myself. It’s not my first time. And there it is: “I’m traveling a lot and I don’t get the opportunity to do what I need to do.” So I have to drive it home for him: I’ve got serious stuff going on, I’ve got scar tissue in my brain and I have to lay flat 20-22 hours every day, I’m in pain, I can’t get another operation right now. His reply: “Okay, just know that you’re missed.” BTW, he has a wife and two little children at home. She knows about his kink and his attendance at the spank parties; I don’t know what else she knows because the travel job is news to me – but then again, we were never close.

This is also not the first time I’ve had to turn him down since I started having shunt failures. His kink always comes first. It’s fucking exhausting, man. But if y’all are interested in a pen pal, hit me up.

In other news, for about three weeks I’ve been dealing with persistent hives on a daily basis. I wasn’t quite sure what to do because of losing my rare disease doctor. However, I received a message from him this morning indicating that he put a script through to the compounding pharmacy for me that will (hopefully) help with my hives as a sort of last hurrah while I try to find another doctor. I also got the names of two doctors in the area who would be willing to communicate with him. The problem is that one is old as dirt and so probably won’t be practicing much longer, and the other one isn’t much younger and has a bad reputation for being a raging bitch. I need to sacrifice a chicken and do a dance around a fire or something.

Also today, I received a call back from the neurosurgeon’s office whom I originally saw two years ago when I relocated here from Phoenix. I called him as a last-ditch effort to try to be seen by him or someone else in the practice and get away from my current neurologist. She has been telling me that I don’t understand my symptoms – kind of along the same lines of telling me that even though I stubbed my toe, it’s really my nose that is hurting, ridiculous like that. So this neurosurgeon was kind enough to order a repeat lumbar puncture, which I’ve been begging for since December 2016. The lumbar puncture he ordered is “high volume,” meaning they will take at least four vials of cerebrospinal fluid. They will measure the opening pressure (like you would when you check the pressure on your vehicle’s tires) and then they will send the vials of fluid for testing of the proteins and check for bacteria. Getting this done will also relieve my symptoms for a few hours. He also agreed with me on my choice of neurologists within his group. 

My current neurologist’s justification for not ordering a current LP is this: Usually slit ventricles means that you are overdraining. I pointed out to her that my shunt failed 17 days after surgery in 2015 so I’ve got high pressure, and she witnessed my shunt opening up for about 30 seconds during my last appointment, and my paralysis went away, then came back. Then we read scientific journal articles together about adults with slit ventricles and shunt failures and symptoms. Then she said it only happened to some adults. I asked her why I couldn’t be included in that “some.” She told me it didn’t count because I wasn’t throwing up, I was only nauseated.

Fuck that. Spinal tap, here I come. 

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Bring It On(line) – Trusting PatientBank With Your Medical Records

I have purchased some awfully pretty, recycled 3-ring binders to haul around my most relevant medical records to my doctor appointments. They’re intimidating because they’re large and they’re many. I also have my own laser printer/copier/fax in my tiny studio apartment. It was the single-most best score from when I lost my job – my former employer let me keep it as my consolation prize, of sorts. But for the love of all that is holy, I cannot carry all of that with me to every appointment. But I need it all! One doctor told me that they have 1,200 pages in their system from only the last 6.5 years that is a combination of what they have logged themselves, and what I have given them.

This is where PatientBank comes in. Disclaimer: I have been given access to PatientBank.us 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.

When I received this assignment, I was encouraged to have this company request as many and as much of my medical records as possible. Little did they know that in the last 6.5 years I had seen 57 doctors in 2 different states and who knows how many disciplines (I think 8? Possibly  more). Now, I had just gone through quite a lot of nastiness getting some records because I’ve been trying to get disability as well as go through the process of getting my case looked at by the Undiagnosed Diseases Network through the NIH, so I had had an influx of records shortly before this opportunity.

However, I didn’t have a lot of the records from the past year and a half. The Undiagnosed Diseases Network wanted to go back 10-20 years prior, and my attorney had gotten some records sent directly to him for the more recent stuff, so I figured I could still give PatientBank a pretty good run. I created a login and password at PatientBank and the first logical place to go for new users is to create a new request:

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In this case, I’d like to request a copy of my records from a doctor in Minneapolis, so I can search by his/her name and the state. If his/her name is in the system, I can choose it in the menu. If it isn’t, there is an option to add it.

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After you choose the correct physician, you can specify the date you visited, and whether or not you want “sensitive” info included. If you are not sure what sensitive info means exactly, you can let your mouse hover over the blue text and the black text box pops up and explains what might be included.

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Then you click on “Add to my order.” I got the pop-up screen with a prompt to sign to release my records. Here’s where it’s really, really tricky, folks. I have a touch-screen laptop. You might get pretty good results if you use a smartphone/iPhone. This pop-up window gives you the instruction to “click and hold down to draw.” But if you actually have a mouse in your hand, it’s going to look nothing like your signature, and you’re going to have a really hard time convincing your doctors and hospitals to release your highly sensitive info.

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What happens while you wait? You can see your pending orders under the menu item “Requests.”

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You will also get periodic emails from PatientBank that state in the subject line what’s happening with your request. I really tried to get a good variety of requests going – some hospitals, some large group doctors’ offices, some very small doctor’s offices. The email subject lines would vary from stating that they were still working on my request to the request was successful. There were a couple that had failed. The suggestions regarding why they had failed were that it was possible that I 1) hadn’t been a patient there; 2) it had been too long ago and the records were destroyed; 3) my date of birth was wrong, or 4) my name didn’t match. (I laughed because none of the above applied to me, especially because other doctors referred to my visits to those doctors and they were recent visits.)

At one point I had accidentally requested records from an individual doctor as well as from a large system that took care of his records, so when I received his records as part of the large bundle but still received emails stating his records were pending, I attempted to use a pop-up chat to ask that the individual request be cancelled. Unfortunately, an entire week went by and the chat was not responded to. I resorted to emailing the company and received a response. 

When I started seeing successful results rolling in, I went to check my records. When I clicked on “View” next to the entity that sent records, nothing happened – I just got a blank page with a cloud in the background. I didn’t think this was behaving quite as it should be, but I’m quite click-happy and I got around it for the time being by actually clicking on the button labeled “Download” at the top of the page that is meant for saving the document directly to a drive or computer. I started this process in the month of December, 2016, and now in February, 2017, everything is functioning as it should, so it seems that this is no longer an issue.

I had the opportunity to speak to Kevin Grassi, MD, the Co-Founder and Chief Medical Officer of PatientBank just a few days ago to go over some of the finer points and challenges of the system. The communication issue with the chat has been resolved and shouldn’t be a problem now, though I haven’t had to use it again, so I can’t confirm. Kevin pointed out that the system has the capability of patients uploading documents so that we truly can have everything in one place (!) – because let me tell you, I have about four discs that I’m tired of keeping track of weirdo passwords to. However, a limitation to that right now is that actual films/scans can’t translate on PatientBank. (If you’ve ever played around on patient portals and been lucky enough to look at CT scans or MRIs, or been in an anatomy class where you can virtually strip a cadaver down to the bones, you will understand how much power is needed for imaging – and then, you know, multiply that by millions for patients…)

An option that Kevin posed to me was the possibility of sharing records. The sharing could be anonymous; the option could be to only allow doctors to look at a patient’s records in case they would like to find similarities for other cases, or the other option would be for patients to find each other. I let Kevin know that I would opt out of both of these. I could really dive deep into why I immediately clench up at the thought of either and both, and right now, this is the best explanation I can offer. First, I have a deep distrust of doctors at this point. Two of the records that I got back from my initial requests included such gems as “I suggested Tai Chi but patient was non-compliant” and “patient is bragging about her surgeries and has Munchhausen’s” (after only seeing me for 20 minutes – and now we know that my brain has literally collapsed and I have a tumor). Second, I am not a big fan of getting into support groups with other patients. Sometimes it turns into a situation where we all end up trying to defend ourselves and our symptoms and the way we feel, and sometimes we all end up really depressed.

One of the features that I really like is that I can actually email a link of my documents to my attorney directly from PatientBank. The University of Minnesota bundle, which I think covers something in the neighborhood of about 8-11 doctors (I gave up counting), is about 250 pages. I have the option to fax directly from PatientBank too, but good grief, why would I?! I’m gonna send the link so my attorney doesn’t fire me!

Kevin assured me that other features will be added in the coming year, so I look forward to trying them out. Technology in healthcare is here to stay and PatientBank is doing a great job of navigating the future.

Visit: PatientBank

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.

The Tiers of Privilege

Minneapolis and St. Paul feel like very different cities from when I moved away 20 years ago. There was a palpable difference between Minneapolis and Albuquerque; in Minneapolis in 1995, my neighbors were white, black and Hmong (thanks to new policies welcoming large numbers of Hmong refugees from Thailand, Laos and Vietnam seeking a better and safer life), and in Albuquerque, the population was largely white, Hispanic and Native American. I felt as if I had moved to a different continent. The way that people interacted is something I can’t easily describe, except that I learned the “manana” (“tomorrow”) concept from my co-workers the hard way, and was told by employers that I would always be valued because I was a Midwesterner and therefore more “uptight and on time.” The population in Phoenix now closely resembles Albuquerque from 1995 – again, the residents are largely white, Hispanic and Native American. Because the southwest didn’t shift in any obvious way, I didn’t expect the Midwest to either.

When I moved back to the Twin Cities, I was not prepared for the greater diversity in the population, but my traveler’s heart is quite excited by it. A lot of the cab drivers I have had for my medical transportation have immigrated from Somalia, some arriving the same year I left Minnesota, telling me stories about how they excitedly called their relatives back home to tell them that powdered ice was falling from the sky (snow), and their relatives always asked the same question: “For free????” There are also now large Hispanic communities settled especially around the cities where living wages might be available. All of these groups are bringing their wonderful musicianship and dancing and food and willingness to endure countless hardships as strangers in a strange land because they know that turning back is not an option.

Why am I talking about all of this anyway? Well, the U.S. has always been a country of  tiered privilege. The caste system does not only live in India, my friends; it’s alive and well, even here in Minneapolis/St. Paul, where we pride ourselves on this appearance of being so tolerant but then have something so stupid/needless/heartbreaking/violating/sickening as the shooting of Philado Castile happen. But it’s not just race that determines where you land in the land of privilege – there’s a lot of “ands” that are the deciding factors.

Let’s start at the top. Your average white dude is the ultimate king of the food chain, born with the silver spoon in the mouth. Guys, you just are. If shitty things happen to you, the system isn’t against you in “pulling yourself up by your bootstraps.” You might want to feel sorry for yourselves, you might want to stomp and cry and try to convince us that you are being picked on and we should feel sorry for you, but I can’t. I can’t.

We can take it down a notch and look at white men who are physically handicapped by a chronic illness. Men are believed faster/more often than women when it comes to pain. Why? Medical sexism. On the tiers of privilege, white men who are in some way physically deemed “less valuable” by society are on a lower tier than ordinary white men.

I’m pretty sure my place is on the next tier down from that. I’m a white woman.

But wait: knock me down a few more rungs, because I’m a white woman who is also physically disabled. Since I’m a woman and I’m physically disabled, I have absolutely no value whatsoever, a “non-person,” specifically. My cane and paralyzed face make me invisible to nearly everyone (and if you don’t believe me, you should walk through a store or down a sidewalk with oncoming foot traffic with me).

But yet…where do all of our friends and neighbors of color fit in?

My Filipino ex-boyfriend was educated and articulate (except when it came to actually being in a relationship – but that’s another story); his status as a man was relatively high, but as a man of color he ranked lower. Unfortunately he suffered from bipolar disorder, so that could be seen as a detriment, but then again, he was believed – his gender saved him from medical sexism. He always claimed that strangers looked at us distastefully when we were out in public. I think he is valued much more than I am, even though he would deny it.

My most recent Native American boyfriend had a much harder upbringing. He grew up on the largest reservation in the U.S., the Navajo reservation on the New Mexico side. Poverty, crime and mental illness brought him into adulthood. He left the rez to get an education, but for one reason or another, he has clung to the the things that have only brought pain and destruction to his life. Where does he fit into this world?

And then there are the women of color who earn even less than the men, who are physically and sexually assaulted, are obviously valued less when they are forced to remain silent in the company of men or to walk a few steps behind them. Add an “and” to them – a physical disability – and really, how much lower can one go in terms of value as far as society is concerned? I startled a Somalian woman in a waiting area once; I carry cough drops and I noticed she was having a coughing fit, so I offered her one. Her interpreter arrived a few minutes after that and she was called back for her appointment, but she made it a point to tell her interpreter to thank me in English. I did not consider it an insult that she did not know how to say it herself when she was on her own, but since I know how the public at large acts more often than not, I could just imagine that even that simple interaction added stress to her afternoon. Like me, she walked with a cane. I wondered how she was treated by her peers and family.

I am always disappointed when I see/hear someone say, “Why don’t they just ____”? as if we are simple creatures and there’s a one-size-fits-all answer. There isn’t. (That’s why they should stop just conducting medical studies on middle-aged white men if they want real-world results. I mean, hey, we finally figured out that heart attacks are worlds apart between men and women!) The most important thing to understand is that just because things look a certain way from where you’re sitting doesn’t mean that everyone else feels the same way. If you can’t see past yourself, then your world is very small indeed.

Gaslighting

Drummer #2 was the absolute master of gaslighting. I keep a lot of emails – yes, even the really shitty exchanges I’ve had with boyfriends – and recently re-read a couple from Drummer #2. When I read his words, the shame felt nearly as intense as it did when I tried to break up with him for six months running in 2009. He worked hard on me to convince me that I was confused about what I was feeling. He was condescending and repeatedly told me that if I would just do things his way, I wouldn’t struggle so much. He told me that I wasn’t identifying my emotions correctly. It was exhausting. I was an emotional wreck. But just like this author, I finally got away, and I have never looked back and said, “Gee, maybe I should have stayed with him.”

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You know when you have a lightbulb moment, when you read something, spit out your coffee and suddenly go WHAT THE FUCK, WHAT, THIS IS EXACTLY LIKE READING ABOUT MYSELF! Well, I just spat out my cof…

Source: Gaslighting

What I Know, What I Don’t Know

Okay, first of all, a very specific search appeared on my radar yesterday: “Indian sites for compression hose fetish.” Hats off to your freak flag flying proudly, whomever you are. Also, hats off to wanting your objects of desire not to have to suffer from varicose veins. I’m sorry that my mention is probably repeatedly bringing you back to my blog; I wish you luck.

Second, I got a diagnosis.

I’m going to start where I think I should, and that is May of 2009. I was living with the very controlling and very violent Drummer #2 in a beautiful 3 bedroom/2 bath on a man-made lake. My friend who is a CPA and has taken care of my taxes for 16 years as of this year flew down from Cincinnati. Drummer #2 was on the verge of nearly smashing my head with a drinking glass, but I didn’t know it. He made me feel like absolute dirt because my friend was visiting, so much that the friend had to stay at a hotel rather than in the spacious home we occupied.

My friend rented a car so that we could run around the state of Arizona, and most importantly to the Grand Canyon. We hiked down into part of the canyon; it was not easy for me because I had already had fibromyalgia since I reached adulthood, but I did my best to keep up. I was so happy that my friend had made it down to visit, even though the nastiness of Drummer #2 put a damper on things. Drummer #2 didn’t accompany us and that was absolutely fine with me. I wanted to be able to relax. My friend flew home and life went back to walking on eggshells to try to not make Drummer #2 angry – which proved impossible. The week after that trip was when everything went down with the asshole and I moved out in a hurry.

Fast forward to October of 2009: I went to the emergency room because I developed a stiff neck and excruciating pain. Every time I moved my neck I cried. I didn’t sleep for four days and was starting to hallucinate. The ER doctor had no explanation for me because I didn’t have any other symptoms like a sore throat or a fever. He sent me on my way with muscle relaxants. The pain didn’t abate for a full week.

Around the same time, the naturopath I was seeing started documenting new symptoms for me, mainly that I had a constant rocking feeling, and I was always nauseated. We tried different remedies including Dramamine, but nothing even made a dent.

Have you thought up a diagnosis yet? Just wait.

In July 2010, I developed crushing fatigue. I drove over to San Diego mid-month to spend time with a man from Germany who made yearly trips to Comic-Con, the big one. I struggled to walk a few blocks between my hotel and nearby restaurants. He was used to walking up to ten miles a day; I felt a bit ashamed because I felt as if I embodied the lazy American stereotype. I was also plagued by deep bouts of vertigo to the point where I nearly fell down an entire outdoor cement staircase.

During the last week of the semester at school in July, I had to drop out and not take any finals. Fatigue and vertigo ruled my life. My parents were concerned because I spoke like a zombie, no intonation – very unusual considering I was a theater major in school. My speech was slurred, the top portion of my face became paralyzed, and my head began to nod uncontrollably. Because my body was under so much stress, my cortisol levels shot up to ten times the normal amount.

Have you guessed it yet?

In July of 2011, I finally started getting relief from the pressure in my head because a neurosurgeon installed a shunt. However, I had a total of 10 shunt surgeries in 46 months because my body fights them, clogs them, breaks them, strangles them. I have had horrible abdominal pain since July 11, 2011, because that is the first day a drainage catheter began living within my peritoneum and my small and large intestine, and there is a war being waged 24/7.

46 doctors and two states later, a naturopath in Saint Paul suggested I get some blood tests for Lyme disease. I ended up having to pay full price for them up front because they were not covered by insurance/medical assistance. I will admit that I didn’t think I had Lyme but I just wanted to rule it out like I had done with everything else up to that point. Two of the tests had inconclusive results; the third one lit up like a motherfucking Christmas tree.

I have late stage aka chronic Lyme, and have had it for nearly seven years. It wasn’t on anyone’s radar. Why should it be? I didn’t have a bull’s eye rash. I lived in Arizona, a state with a very small tick population compared to other states. The CDC has very strict guidelines about what can be reported for Lyme and I may not fit their parameters; however, I am still going to contact the state health board and let them know I was infected while I was a resident in the state. I think that only 8 cases have been reported to the CDC for Arizona. I don’t even know if they will take my data because I was diagnosed based on antibodies specific to bacterial exposure, and they only want tests showing the bacteria, which may not be detectable because of the time that has passed.

I know that most of the doctor visits and labs are not covered by insurance, so I will truly be destitute in short order. They are not covered because insurance companies and even the government get bucky about late stage/chronic Lyme, sometimes refusing to acknowledge it exists. There are now temporary laws in place in Minnesota that allow physicians to prescribe antibiotics far longer than they have before, for years instead of months, and the law is set to expire in 2019. I feel like my diagnosis is sitting on the cusp of being dismissed and being accepted. I don’t know how they will deny that my facial paralysis ties into the positive results on the blood work, but I’m sure they’ll find a way to tell me I just need counseling. It wouldn’t be the first time I heard that.

I don’t know what will be irreversible with the neurological problems when treatment starts. I think the facial palsy and ptosis may go away. I think the tremors will take years to adios if they stop at all. The left side of my body has lost some sensation. For example, when I am descending stairs, I have no concept of the pressure my foot exerts on the steps (and vice versa) and so must go very slow. I have been doing exercises to counteract the bed rest and try to gain some of the muscle I have lost, but I always feel like my nerves are disconnected on my left side, and I tire much more easily when I work on that side. I’m also having some cognitive difficulty including word recall. As I type, I fight to spell words correctly – I have developed some weird form of dyslexia. If you knew how particular I am about spelling, you would be as alarmed as I am. Sometimes it takes me a dozen tries to write single words correctly that would have been a breeze previously. Ultimately there is a 50/50 chance that treatment will work, and it may take years to get any positive results.

Besides notifying the board of health in Arizona and Minnesota, I have decided to write letters to my team of doctors in Arizona to let them know about the diagnosis. I am not trying not to think in terms of, “Oh, if only someone would have tested for Lyme, I wouldn’t have had to have 10 brain surgeries.” Honestly, the disease has really fucked up my body, and it’s possible I would have needed the surgeries even with the right diagnosis.

If my symptoms do abate, I’m going to have a serious conversation with some neurosurgeons about removing the current shunt. It has adhered to my chest and the abdominal pain is still constant, and I just think I would have an easier time without it. However, that also leaves me more vulnerable to CSF leaks – and I don’t ever, ever want that pain again.

Lastly, I don’t know if this is a “rare” disease. The data is poor. On a survey of health, chronic Lyme rated the worst for quality of life as outlined in this article – worse even than congestive heart failure, multiple sclerosis, fibromyalgia, diabetes and depression. In other words, I truly won the shit cookie.

Chronic Lyme Disease

 

Speak Easy

Last week Friday, February 5th, Nikki (http://ilivebreathe.com/) and I had our first chat on Blab. The agenda was to talk about toxic people, the diverse challenges we face when interacting with them, and when to let them go. The recording went much longer than we planned at 1 hour 45 minutes, but if you are interested, here is a link to the show:

https://blab.im/82740adeac204a028576bc288ef25703

We decided to come back this week with another show, and this time the topic is self-care. What do you do to bring yourself back from the pit of despair? Do you allow yourself to laugh or cry? If you have seen the movie “Amelie” (French with subtitles), you know that each character is assigned a list of things that seems like a very simple pleasure. Amelie’s father likes to take all of his tools out of the toolbox, clean out the box, and very carefully put the tools back in. A patron at the eatery carries a mini tape recorder with him everywhere, and then records unusual laughs. Amelie likes to stick her hands into barrels of dried peas.

What do you do to make yourself feel better about your circumstances?

Join us on Blab for a discussion on self-care; we’ll start at 6 pm EST/3 pm PST Friday, February 12th.

https://blab.im/nikkiseefeldt-sickadilly-chat-2-self-care-strategies-rare-dis-disability-chronic-illness

Isn’t That A Co-inky-dink?

This year began on pretty rough ground. First, Quato from Total Recall was growing in my left ass cheek and trying really hard to bust out. Every day for three weeks (including some weekends) someone had to look at my bare ass. Then my body got so stressed out from not being able to stay flat every day that my tremors came back. I have been feeling just exhausted. I wish I had a Keebler elf that I could pull out of my pocket and demand that s/he do all of my dishes and scrub my tub and toilet.

But here’s the thing: I’ve been getting some validations.

The start was getting the image of a lemon cake, the kind like my mom made when I was a kid, in my head. I could picture myself mixing the lemon curd to make the frosting, putting that on the layers, and then cutting myself a slice, still kinda warm. Later on, before I left to go to the meditation class, I caught up with a friend I haven’t talked to in about a decade. She told me that she made herself a lemon cake that afternoon to celebrate her own birthday.

Last night I thought to myself, “Call S. in Scottsdale.” I didn’t know why I thought that, because we talked two weeks ago and I figured that update would have carried us over for a bit. Ten minutes later she called me to tell me she had moved (somewhat abruptly) and her plans changed from what she told me two weeks prior – she decided to stay in Scottsdale rather than pursue a job opportunity elsewhere.

My final ride for the evening yesterday on the short bus involved me being picked up from the grocery store and redeposited at home. It ended up being a really, really long ride – since it’s a ride share, rarely is one rider picked up and then brought to their destination without stopping elsewhere first. The driver and I started chatting while we waited for one rider to finish with her church group. I heard, “Tell her you’re selling your car” in my ear, or brain, or however you’d like to think about it. Anyway, I worked it into the conversation. She became serious and asked me what kind of car it was because she and her husband were looking for a second vehicle. I didn’t really do a hard sell with her because ultimately I didn’t think it would be something she would seriously consider; my car is a hatchback, and she was talking small SUV. Still, it was worth a shot.

I’m not really sure what I have to do to keep connecting with the universe, but I guess I had better get a move on.

 

Seek And Ye Shall Find

Yesterday didn’t strike me as being especially significant. It wasn’t a holiday and my rare disease wasn’t cured, so…

Okay, first of all, I’m paying more attention to the things that bring people to this little blog – and I do mean little. Six months ago I was lucky to get three visitors in a single day. Now my number of visitors is increasing because of the ways that I am networking with other bloggers and the content that I am including.

Nothing could prepare me for some of the search terms indicated by the program, though. (You’re welcome.)

*where does horny women hang in nashville
*fragile handle with care advertise porn
*pantyhose kik names
*stocking fetish social sites in India

Congratulations, and let your freak flag fly. There’s no way for me to identify the people making these searches. I have to point out, though – no one searched for hot, bald, unmarried women?? I mean, it’s been a while since I’ve been proposed to by a total stranger. I hope that issue remedies itself shortly.

In the evening yesterday I took the short bus to a guided meditation session held in a health crisis center. I wasn’t sure how it would go because I tend to just kind of throw my hands up in the air and then rush onto the next thing, whatever that is, to keep my brain stimulated because I get bored easily. During the actual meditation, which really only lasted about 20 minutes, I had to fight against dozing off twice, and luckily I didn’t snore or accidentally pas gas.

Twice I saw an orb rise out of a pool. I only “saw” it to the left of my left eye. I told some of the attendees during our recap about my experience and let them know that their vibes had a specific effect on me. One woman asked me if I had always been able to read strangers’ energy. I have, but I have never really put effort into following through on what I read; usually I push it away or ignore it, which is actually very destructive because then everything gets a free pass into my life and I end up hip deep in crap.

Whatever happened, the universe made a connection appear for me. My short bus driver made a stop after mine to pick up a lady in a wheelchair. She greeted me when she was lifted into the van, and immediately we started chatting. I asked her if she had just come from a dance performance because the building she had come out of was a theater specifically set up for that purpose. The answer was no, in fact; she was on the board for VSA Minnesota, the “state organization on arts and disability” (I got that from the website).

I told her a bit about my arts background as well as what I’m doing now (which is admittedly very little because my days are consumed by endless doctor appointments), and she gave me three organizations to get involved with besides her own to network, meet new people, be creative, and maybe even apply for a grant in my area of interest.

To the casual observer, this may not seem to be a big deal. It just drove home to me the fact that this state is so much more inclusive than where I moved from. I never, ever would have had so many resources to access for my particular physical challenges if I would have stayed in Arizona. I wouldn’t have been able to even ride the short bus because of their strict rules regarding who should be allowed to ride.

Really, meeting and speaking to that woman last night helped to open my eyes to the fact that even though I’ve got these major problems, I might actually be able to find a group of people who can see art where others may only see injury and illness. I am still working on retraining my brain to accept this as my new reality because the doctors have refused to keep operating on me. I still really miss driving my car while harmonizing at the top of my lungs.