Ladies First

I grew up in Minnesota, and I currently live in Minnesota, though there was a big break of 20 years where I lived and voted in other states. Still, one of the bright and shining lights in being in this horrible position of having to burn through all of my personal savings and deplete my entire 401k plan just to live until I find out my fate in a much-delayed disability hearing is that from my mayoral candidate to my state representative to my House and Senate candidates, everyone is a Democrat.

And the two Senators from Minnesota are very popular; Amy Klobuchar is a champion for women and often works across the aisle to find common ground so that bills don’t stall completely. The most recent bill (embarrassingly) is the one outlining what needs to be done in the case of sexual harassment – because nothing has been in place or updated for more than 50 years. Amy Klobuchar’s office is “following” my disability case, though for the time being, there is not much they can do to speed the process to the hearing because I’m technically not completely down to zero dollars (though I’m close) and I’m not close to death at the moment. Things have changed quite a bit since that concept of approaching your senators and representatives for help was introduced.

The other, Al Franken, often makes the news because of his relentless and sarcastic grilling during committee hearings. As recently as Wednesday night, after another video was posted on Twitter and Facebook, people were calling for him to run for president in 2020 because of his no-nonsense approach and seeming transparency in all areas professional and personal has made him the darling of many who tire of the current shitgibbon in office who picks fights with other world leaders via Twitter.

Of course, everything flipped on Thursday morning when it was revealed that Al forcefully kissed a woman after she refused him, then pretended to grope her while she was sleeping.

Al is actually a friend of friends, so I’m going to start there. I’m going to imagine knowing him for a few decades as someone who went to his house, or he came to mine, watched his kids grow up and he watched mine get bigger, and maybe we talked about how I finally got diagnosed with this really sucky disease that has no cure and not a great prognosis – because that is what happened to my friends. And it seems like he genuinely cares and wants everyone to have a better life.

My friends were hurt and disappointed. It’s difficult to wrap your head around having something like this hit the news and it touches every corner of your life. How do you explain it to children, who also see it on the news and hear adults talk about it? How do you bear the burden of close people being really disappointed, not to mention millions of strangers? How do you feel safe around someone who says that they respect boundaries and is a champion for women but then demonstrates the opposite?

Al even co-sponsored a sexual assault bill; it addresses how first responders are trained in handling rape victims and how to interview them. Abby Honold had to fight her rapist for two years in court in order to get a six-year sentence for her attacker. As soon as the story broke regarding Al’s behavior, Abby contacted his staff and requested that he immediately remove himself from the bill, and he agreed.

I tried to talk about this situation with a man who I generally see as supportive to women. When the report came out and was immediately confirmed and an apology was issued, I was extremely disappointed too. I admit I don’t personally know Al, but fuck, I’m a woman. I’m a woman who has worked with men. I’m a woman who has been out in public. I’m a woman who has been groped without permission. I’m a woman who has been kissed without permission. I’m a woman who has faked pleasure and orgasms in order to get away from someone as quickly as possible because I have recognized danger. The man that I tried to talk to about this knows this, because we have talked about it over and over.

But this time, he told me to shut up. He told me that the woman who reported it accepted Al’s apology, and that’s all that is needed, and my opinion doesn’t matter. Then he said he was sorry he got into the subject with me. Then he said he had bigger things to worry about. Then he went into these big, long speeches about how what Al did wasn’t as bad as what Roy Moore did, and it was before he was a senator, so he should just be left alone. This entire time he was spouting off, I didn’t say anything. There wasn’t anything I could have said that he would have been receptive to. He was in Lecturing Middle-Aged Privileged White Male mode. 

Why do I take it so personally? Just last week I had been talking about adding Al in on my disability case in trying to get it pushed through faster because my funds are running so low, but my instincts kept holding me back. I don’t know why. Now I’m afraid to ask my elected official to help me just because I have boobs and he might want to feel me up in return for helping me. Why does everything have to have a fucking cost? Why do I have to whore myself out? I truly don’t think that men understand just how much of a betrayal this is, when we confirm that yet another person has abused their power.

A man saw fit to tell me that my opinion didn’t matter, then he went on to tell me all about his – about men forcing themselves on women, and his conclusion was that it wasn’t that bad and it could have been worse. Another man posted his own conclusions, saying that as long as love and dating have been around, “unwanted feelings” have been a part of the whole thing, and we should just deal with it like adults. Here’s the thing, though: Al and his accuser never dated. Ever. And for part of it, she was asleep. I realize that every man has a “wake me up with a blowjob” fantasy, but when a woman is in full fatigue gear and wearing a flak jacket and helmet and is in a deep sleep sitting up on a plane surrounded by men, exhausted, she’s probably not fantasizing about how she can fulfill their high school porn dreams. The same can be said about my asshole ex-boyfriends who didn’t believe me when I would get pissed about them feeling me up in the grocery store when I was trying to take care of a long list and they were contributing absolutely nothing of value, including money and effort.

I really, truly wish that men would put their dicks down and listen.

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Suffering For Art

 


Yesterday I posted this article on my Facebook page, indicating there are certain entertainers I won’t support even on Netflix/Hulu/Amazon because they still receive royalties. I won’t even check out their movies from the library.

I was subjected to “Annie Hall” my freshman year in college. Woody Allen is a whiny fuckhead criminal, and I don’t understand why people, especially women, keep clamoring to work with him. Who does he remind me of? The abusive guy who doesn’t live downstairs anymore. I have paid attention to the trailers of Woody’s subsequent films, and quite frankly, they have nothing to offer beyond what we have already seen. Who keeps saying he’s a genius? Other men who want to bang underage girls.

One of my friends agonized over the fact that “great artists” might be shitty people. And by “shitty people,” he means that they probably rape and molest women and/or girls and/or boys. But, by god, look at their art! What would we miss out on if they didn’t do all of those things to other people! So the conclusion that this friend came to is that we should still support and admire the art – works by Salinger, Brando, Led Zeppelin, The Doors, Mailer, Eliot, the list goes on.

My answer is no. I’ve never seen any of The Godfather movies. I’ve never lingered on a Pollack painting. Never read Salinger. When I find out that someone is a douchebag, I drop them like a hot mess. I will never again laugh or relate to a Cosby joke. He drugged women to fuck them, and then, you know, blamed them or tried to gaslight them.

Another friend who jumped in on the conversation jokingly said that he would support the art if he could pirate the material rather than outright buy it. But he would still miss the art too much if he had to give it up because he loved it too much; he was a huge John Lennon fan, and that outweighed any bad behavior.

What is especially disturbing is that the second friend wrote up a little speech during the first wave of #MeToo posts, saying he became aware of how unsafe women feel after a female friend asked, “But is it safe for me to go there by myself?” He expected and received a lot of accolades. But he and the other guy were pissed at me for this post about not supporting assholes and criminals. I mean, they both apologized for offending me, but only after speeches about why I shouldn’t be mad. Don’t be mad, brah. We’re just flawed and we don’t want to stop bad behavior if it results in good art.

We all attended the arts high school together. I’m always surprised and then disappointed when I think that we’ve all evolved at the same rate, because we had this really great experience, and I’m proven wrong. I’m a harpy now. Why can’t I be all cool about loving the art and understand that men will be men and suffer and need salvation – but know until then, they are going to beat and rape women and children?

I’m just wondering when I stopped deserving to be safe. Is it because I’m an artist and I should expect violence from other artists for the sake of art? Is it because I’m disabled and I should be thankful for whatever comes my way? Where is the motherfucking disconnect?

I’d much rather throw my money and my spirit at artists who aren’t shitty people. For instance, I like Sara Bareillas. I’m pretty sure we’re not going to be reading any shockers about her. I also like X Ambassadors. Have you heard about their partnership with No Barriers for the Renegade Scholarship Fund? “The organization helps people embark on a quest to contribute their absolute best to the world. From middle and high school students, to adults with disabilities including wounded veterans, the organization serves people of all backgrounds and abilities united by a common desire to live purposefully despite the barriers in our way.” And since I live across the street from the art gallery my sister manages, there is an endless stream of local visual artists I get to talk to and take pictures of their goods to post online for social media.

There are so many opportunities to support positive artists, both living and dead, that I don’t feel the need to give my attention or money to those who destroy others. I don’t accept the status quo. I don’t go along with the idea that I should like them or their art just because they are “classic” or “geniuses.” Now that we have the internet, we have access to so much more material. Besides, last time I checked, The Doors aren’t putting out any new songs.

A Few Of My Favorite Things

I love sharing my favorite things – especially if they promote the use of less chemicals. If you get the chance, I highly recommending finding the movie “Chemerical” – as of 10/22/2017, it’s included on Amazon Prime video.

1. Make your own all-surface cleaner for pennies! 1/2 c. white vinegar, 1/2 c. rubbing alcohol (I prefer 91%), 2 c. water. That’s it! Blank spray bottles can be found in most aisles near cleaning supplies – not cosmetics. Those little colored spray bottles are terrible.

2. Make your own floor cleaner for pennies! 1/2 c. white vinegar, 1/2 c. alcohol, 2 c. water, 5 drops dish soap. That’s it! If it’s not enough volume, double it.

3. Deodorant/Antiperspirant: I was afraid that I wouldn’t find something natural that wouldn’t work for me, because I have HS and other issues and am very self-conscious. However, I took the leap and tried something from Etsy. Wow! I specifically went for the clay option to go for as much protection as possible. Sometimes I have to go in with my fingertips and make sure it’s spread evenly, but c’mon, people, it’s just skin! And it works! And I don’t break out in terrible hives, and the smell isn’t overwhelming! Aluminum-free antiperspirant ByJenJen

4. Cosmetics: I don’t buy many commercial cosmetics anymore. Do you know why you have to throw them out every 6 months? Because you put your makeup brush in your eye, and then you put your makeup brush in the makeup, then you put your makeup brush in your eye, then you put your makeup brush in the makeup…and you make bacteria soup. So with Aromaleigh cosmetics, everything comes in a little sifter jar. I just tap out what I want to use in the lid. Now that I’m getting (gasp!) old, I can also get matte colors instead of pearle – matte doesn’t show the creases as much. They also do a lot of face shades in warm, neutral and cool. And you can BUY SAMPLES of pretty much everything. I mean seriously, you can have a lot of fun. (Backup go-to: Meow Cosmetics. Same concept.)

5. Perfume: For the love of all that is holy, stop spraying that shit on. Stop it. It’s full of neurotoxins and stuff that makes men grow boobs and women grow chin hairs and stop being able to have babies altogether. You are the reason why girls are getting their periods at age 8. Perfume is in dish soap, laundry soap, hair spray, lip gloss, lotion, under eye cream, antiperspirant, and then you want to spray extra chemicals on your “pulse points.” You’re lucky you still have a pulse! Instead, go to Black Phoenix Alchemy Lab and do some serious shopping. It’s a little overwhelming at first, because they like to include poetry with their flavors. Just skip to the bottom and read which flavors are included. I also strongly suggest going to the directory and specifically looking for scents that you are familiar with or want to try, and they will list which products include those scents. I am allergic to patchouli and lavender, so I have to make sure I avoid anything that has either of those in a list. REMEMBER: ANYONE CAN BE ALLERGIC TO ANY OR ALL SCENTS, “NATURAL” OR SYNTHETIC.

6. Laundry Booster: Biokleen “Bleach” Oxygen Plus – It’s not really a bleach. It works like OxyClean but it’s got enzymes and grapefruit seed extract.

7. Laundry Powder: I tried to make my own – you can do 2 c. Borax, 2 c. washing soda and 1 c. grated Fels Naptha soap, but the fumes from the grated soap created problems for me, even with a mask on. So I started purchasing Biokleen products. I recommend either the powders or the liquids, they end up being very reasonably priced.

8. Dryer sheets: Guess what? Vinegar saves the day again! Moisten a washcloth with vinegar and pop it in the dryer with the load. You will not smell funky, don’t stress about that.

9. Toilet Bowl Cleaner: Yes, it’s Biokleen again. The Soy Toilet Cleaner is worth its weight in gold. I also use it to scrub my sink and tub if I don’t want to use vinegar and baking soda, or Borax. (Side note: Vinegar is anti-fungal – just think about how long you can keep that jar of pickles without mold growing.)

10. Oily skincare: I’m 43 and I still have the skin of a 13-year-old. It’s specifically about inflammation with me. My favorite products include Desert Essence Thoroughly Clean Face Wash (seriously cheap too!), Herbivore Blue Clay Mask and Herbivore Bamboo Charcoal Deep Cleanse Detoxifying Soap Bar (I got these as gifts – I love my friends!).

11. Aveeno Daily Moisturizing Lotion: I have bottles of this scattered around my tiny apartment and carry a travel size in my purse. It’s a great commercial brand that has low toxicity according to the Skin Deep Environmental Working Group Database. Are you familiar? You should be! It should be your bible! Here’s the Aveeno Lotion page.

And my favorite things wouldn’t be complete without my favorite actual things, as in the things I have reviewed, and yes, STILL use!

12. I still hang with my Oska Pulse. I stopped getting injections in my shoulder in May of 2017 after a full year, so I rely solely on my Oska Pulse to get me through the tough spots. I highly encourage anyone who has any type of pain to check it out and use it heavily. I swear it won’t cause you to grow an extra limb anywhere.

13. I use my Neo 185 Luxe Bidet every single day. Every. Single. Day.

14. Mo’s Dream Cream for pain – yes, Virginia, it still smells like hot chocolate and sledding parties wrapped up in your burrito dreams. I still use it on the regular and it has a permanent place on my bedside table.

Take A Left At The Last Resort

There is a young woman who lives in my current city who has had over 140 shunt-related surgeries since birth, and she’s 20 years old now. She doesn’t have the same condition as me – no one does. But I was lucky enough to meet her and her mom at the hydrocephalus conference last year and I’ve been following her progress. Within the last week she took a turn for the worse according to the updates her mom posts for everyone; this patient is allergic to nearly all antibiotics that have been created, and she’s developed an infection.

It’s especially dangerous because our shunts provide a direct path for bacteria to travel to our brains. Our shared challenge is that neither of us can get a shunt that is coated in antibiotics because we’re so allergic to a wide spectrum of them that it could kill us.

Doctors in this city had suggested that the patient could get a treatment that would somehow desensitize her to this wide spectrum of antibiotics in a city that is about an hour and a half from where we live. Her mom made the appointment and asked lots of questions, and she was told that it would take about six hours in the clinic, and her daughter would be cured. She started to have some nagging doubts despite being referred with confidence by her daughter’s trusted neurosurgeon. Doctors across the country were too scared to do this in a hospital ICU, but this doctor in a city of 65,000 could do it in 6 hours in a clinic? Her mom consulted with doctors in Boston as well as Johns Hopkins and cancelled the appointment. Everyone was of the opinion that her daughter would simply die at the clinic. She already can’t get another surgery unless she’s near death and unresponsive because her scalp is the consistency of tissue paper from all of the surgeries she’s had.

But now what? Cancelling the appointment may have saved her life, but no one really has a good idea for the next step.

I get that question all of the time: What’s next? If. I. Only. Fucking. Knew.

First: Everyone asks me what I have. I’m pretty sure I figured it out, and the doctors that I have most recently presented the theory to have agreed that it’s a solid theory, but there’s no real way to confirm it (though my Phoenix neurosurgeon suggested exploratory brain surgery in 2013 when he discovered my toughened membranes in my brain – no joke). So I still have to say that the doctors don’t really know (but I’m never wrong).

Second: After I say that the doctors can’t be sure, the response I get is, “Yeah, but what is it called?” So………………I don’t know is called “I don’t know.”

Third: The next question is always, “Is this going to kill you?” Now, I’m going to be Captain Obvious here. If no one has ever seen this before, and we don’t know what it’s called, then how could I possibly know if it’s going to kill me? My educated guess is that if my scar tissue continues to grow and take over my brain, I’m fucked. The tissue around the shunt and scar tissue that is turning gelatinous isn’t going to reverse; it will always stay that way.

What would you do if you were the 20-year-old patient and allergic to all but one of the antibiotics available in the U.S., and you had a systemic infection, and you knew that if you took another round, you could lose your ability to take any antibiotics for the rest of your life? And if the infection reached your shunt, you knew it could go straight to your brain and kill you?

What would you do if you had a mystery disease that paralyzed your face, made you walk and talk funny, and stumped over 60 doctors and it took away your life and livelihood? And what would you do if you had almost all of the doctors refuse to take you on as a patient because they don’t understand what is happening or they see no point in trying to help?

 

Moving Past PTSD triggers

PTSD is a many-layered…affliction? phenomenon? illness? hurdle? I’m not even quite sure which adjective I want to insert here. I understand that it’s not a single event. It’s been rolling around and building up like some terrible snowman, and getting the diagnosis was simply the carrot nose and coal smile for me. The healing process has been nearly impossible to initiate because I’m having such a difficult time with finding doctors who will treat me in Minnesota (without writing such things as “Munchausen’s” in my charts); plus from November until the end of July I was dealing with a violent male neighbor who screamed and beat his wife and their cat on a daily basis. After numerous calls to the police department and fighting with the apartment managers – who were trying to force me to move, and were claiming that I was making everything up about the neighbor – the guy suddenly vacated his apartment. My stress level immediately reduced considerably. I’m happy to report that just a few days ago I managed to land a new doctor who is happy to help and cheerful to boot, and he’ll be essential when it comes to trying to control my mast cell activation syndrome issues (except for the brain/neurological problems – I still desperately need a neurologist and neurosurgeon). This does not mean that all of my PTSD symptoms are magically resolved. I wish!
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

ADD . . . and-so-much-more

Do we ever really heal from trauma?
What does “healing” really mean?

© Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC
adding to the Habits, Memory, EF, and PTSD Series

Responding to a comment

Right after I published the second part of one of my PTSD Awareness articles, author and blogger Chuck Jackson posted a comment that asked a question I couldn’t  answer at length in the comment format.

Do you ever recover fully from PTSD?

Chuck went on to add some context to his question:

Looking at your list of symptoms (mental and physical), if I was honest with myself, I would still mark yes to over fifty percent.

The majority of the time, I live a happy and enjoyable life. It is only during periods of anxiety or prolonged depression, do these symptoms raise their dirty head.

They are not debilitating, just very annoying.

So, for…

View original post 2,272 more words

I Know You Don’t Mean It

After I told the Go Stand In The Corner guy that I didn’t want to be his fantasy chat friend on Fet, he still tried to draw me in with more messages. So in the vein of Lin-Manuel, no means no means no means no means no…….well, anyway.

[Break for making arrangements to get the compounded medication to control my hives. I have to try one week of pills to see if I’m going to be allergic to the vegetable-based capsule they use for the powder. Total for 14 pills: $38. Not covered by Medicaid.]

Then I get another gem in my FetLife inbox, completely out of the blue, from a guy I’ve never had any contact with before in a town that is about an hour and a half south of Minneapolis:

Hey there beautiful. I just thought I would send you a text and tell you that you’re one great looking woman. In my eyes bald women are beautiful as I am bald myself. I know you say that you have health problems right now but I still wish that we could talk and hopefully meet as I will come to you as long as you let me. You seem like the type of woman that knows what she wants and I’m the type of guy that also knows what I want and that is you. I’m a gentleman that works too much but also enjoys beautiful women As You Are. I’m serious about meeting you as I would like to meet you now today tomorrow Sunday soon as possible as I don’t want no one else to steal you away from me. Give me a shout out if you’re interested in talking and we can go from there.

So, this is what my profile says:

I relocated from Phoenix back to my home state to be closer to family so they can take care of me during a serious health crisis. Feel free to message me but be aware that I cannot do any socializing of any variety right now. Respect my boundaries.

Now, is there anything in there that says, “Except you, guy. You know absolutely nothing about me including whether I even drink coffee but you know you’re going to make me happy for the rest of my life because you want to do dirty things to my bald head.”????

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. 

We’re Breaking Up

“There’s plenty of fish in the sea.”

Are there, though? I want someone who really listens to me and understands where I’m coming from, who sees me for who I am and not who they think they would like me to be. I’m sure they wish I would lose a little weight, or dress a little better. Maybe they wish I would talk about something else besides always going back to my rare disease. But I can’t, because it rules my life.

I’m talking about my doctors, of course. They keep breaking up with me – or at least, it feels like it. And this is incredibly difficult as a rare disease patient.

The first one to jump ship was my primary care doctor. To be honest, I was a little relieved. I had had a difficult time landing her in the first place – other doctors writing things in my records such as “Munchausen’s” – but most recently she had told me to stop looking for a solution and to just accept it, and that there probably wasn’t anything really wrong with me. She had seen my MRI and claimed that she didn’t know enough about the brain to make a judgement call about what she was looking at, but JFC, even I could see that if all of the big, cavernous spaces are gone and the corpus callosum looks like Charlie Brown’s hair swirl, there’s a problem. Anyway, hers was the first letter to arrive on the University’s letterhead.

The second was my pain doctor. I knew about his desertion ahead of time because we talked about it during my last visit with him. He worked it out so I can remain his patient at his next office. HOORAY. I don’t have to train in another doctor. I like him. We have mutual respect. But I still got his letter on the University’s letterhead and an official-sounding offer to continue my care there with someone else, if I wanted. (No, thanks.)

The third one was my mast cell disease doctor. This one is actually extremely devastating. I felt quite lucky to have found him and to have gotten my diagnosis, and then to have been under his care for about a year. The problem with this disease is that it was only named about nine years ago, and so not much is known about it. I probably fit into a different subcategory from a lot of people because my CSF and dura have been affected.

The mast cell disease doctor is relocating from Minneapolis to New York. His goal is to further his research; he will make himself available to any doctors who reach out to him with questions. He will also see patients on a cash-only basis: $2,000 each for the first two visits, then $650 for each visit after that. 

I can understand why the mast cell disease doctor would want this type of arrangement. He would not be at the mercy of insurance companies. He could run his office and research with full autonomy and receive complete compensation for his time, rather than having to negotiate contracts. And he’s not a young guy; I’m sure he’d like to reduce his own stress in the gloaming of his years.

Specifically, these are my barriers: 1) I’m on Medicaid, so I’m unable to go outside of the state of Minnesota. I’ve tried many times, and each time, the petitions have been turned down. It doesn’t matter how rare my disease is. 2) I can’t find local doctors willing to take me as a patient. Believe me, I have tried. I’ve sent them info ahead of time (per their request), I’ve gone in without giving them any hint, I’ve brought all of my records with me, I’ve bargained with them, I’ve promised not to be a nuisance, I’ve answered all of their questions…bitch, please. Any way that you can think of to convince someone to become your partner, I’ve done it. 3) I don’t have any way to save up money. My earning power is gone – it’s not like I can go to work and take my bed with me so I can keep the pressure off of my brain. I’m using up every last bit of my savings for living expenses while I wait for my disability hearing, which I believe will be in the next six months, so that’s three years guaranteed without a cent of income.

What happens if I don’t receive care? Well, it’s going to get ugly. My chest, arms and face have been covered in hives for the past month. I was supposed to get another prescription last week, but that was abruptly dropped mid-process. This is a crazy disease. Other patients constantly go into anaphylactic shock. I haven’t gotten to that point, though I sometimes have sudden shortness of breath, or lose my voice because my throat becomes suddenly raw. Unfortunately, for me the allergies continue to get worse and stranger, also a common factor in this disease. I won’t even go into the brain stuff, except to say that I know it’s being strangled too.

I can’t adequately describe what it’s like to have a rare disease to people who don’t have one, especially when it comes to finding medical care. I’ve had a fibromyalgia diagnosis since I was 23, and those of you who have chronic illness may have an inkling, but this is a completely different ballgame. I got a diagnosis last fall but have been sick since birth (and I’m 43 now). I only figured out a month ago myself – MYSELF – why I needed 10 shunt surgeries. There are no other documented cases like mine.

If I can put this in perspective, imagine that your child is one in a dozen in the world who has Progeria – the disease that makes children age prematurely, so that they look elderly as infants and young children (and they come with a plethora of underlying maladies). And imagine that there is only one doctor in the world who is an expert, so every child with that disease is going to that doctor. One day, that doctor is killed in a motor vehicle accident. Then there is no one else to treat those children.

That’s what it feels like right now to have my mast cell disease doctor break up with me. The disease affects more than a dozen people, but to actually find doctors who can and will treat me is impossible. I think it would be easier to ask a man to have a baby naturally. 

How Come My Disability Check is So Small?

This is something that I was trying to explain to people who don’t receive disability, but it’s something that’s invaluable to know if you DO receive disability or anticipate that you will be receiving it in the near future in the U.S. as well (as I hope to be by next year, dammit). Thank you, as always, sleepygirl.
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How to Get On

eightfoundlingsredoFoundlings by Marion Michell

Many people get a low Social Security check for many years and do not understand why this is happening or if anything will change it.

Lucky you! You have come to the right place to figure some stuff out.

Reasons Your SSDI Check Might Be Low

Reasons Your SSI Check Might Be Low

Reasons Your SSI May be Denied or Cut Off

What is the Difference Between SSI and SSDI?

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A Really Adult Post About Male Sexuality

A friend posted this article on Facebook. Many years ago I had wanted to be a sex educator, so reading anything that has to do with sexuality in the clinical or psychological setting is fascinating to me. A friend pointed out that it’s an article that is probably aimed towards women who want to find out more about the penis. Maybe, but then again, maybe not. I think that women have to steer men in the direction of talking about these things, or at least feeling safer about talking about these things, just as this author did.

There are a couple of things that stood out to me. First, there are not many opportunities to examine a transgender penis, much less talk about one. They are often portrayed in television shows as grotesque, malformed masses only briefly glimpsed during bloody surgeries, never as final products. This article (and this picture) allows me time to actually look for as long as I want to and marvel at how far this type of surgery has come. I mean, really, genius! Go for the big penis! When I was facing my hysterectomy, I had jokingly asked my OB/GYN to make my vagina slightly longer because the big penises were posing a real problem. She laughed, of course.

Second, I had a partner with a micropenis. And neither of us handled it very well. I was in my 20s and had just moved to Arizona. He was quite handsome and we got on very well, but it all fell apart when we had sex. B. felt ashamed and inadequate, so he overcompensated to the extreme. He would demand that I would tell him he was “filling me up” when in fact the condom couldn’t even stay on. Fully erect, he was about the size of my thumb. B. was frenzied in his thrusting and when it was all over claimed it was the best he had ever had. I was just dazed. In the days after, I told him that I didn’t think that we were a good match. He kept asking why. I couldn’t bring myself to say it. But it wasn’t a relationship first and then sex, it was sex first, and I was just not equipped to bring him through the minefield. Of course I’m hoping that he found someone to love.

Third, I wish more men would quit porn. I mean it. The violence, the fake body parts, the fake orgasms, the fake positions, only being able to orgasm by jerking off fast and hard? It makes for a shitty sex life. And it’s not because I’m not doing enough to keep men interested. If you’re bored, then you’re boring.

Without further ado, here is the article: Me and My Penis: 100 Men Reveal All