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.
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

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?

View original post

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

How Not To Creep

Some sage advice from a fellow blogger. Don’t be a creeper. Just don’t be a creeper. Here’s how to make sure it doesn’t happen:
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

My Friday Blog

Hello dear reader(s)!

If you are like many people, you have or currently do desire someone and may be worried about expressing that desire without being seen as a giant, disgusting creep.  Even if that statement has never applied to you, you may want to continue reading because it likely applies to someone who has or currently does desire you, and then you can use this to identify and head off the creeps in your life.  Heading off a creep can prevent the need to take the heads off creeps, which is much more favored by the legal system.

Despite what many fedora wearing neckbeards who think they are nice and call women m’lady believe, it is possible to express desire for someone without being a creep.  Despite what many desperate single ladies believe, it is possible to attract someone without sending random suggestive pics to their target’s phones.

So…

View original post 805 more words

Is It Time For A Vacation Yet?

I’d like to take some time off from my daily life. I’m not sure if that’s allowed, since I have loads of time off already – my only job is to rest and get ready for the next doctor appointment. But still, I’d like to look at something other than these four walls. In fact, I’d like my old life back and a reason to take a vacation. 

Anyway, yesterday was my birthday, and a couple of friends flew up from Colorado, and we decided to brave the largest art event in the U.S. – the Art-a-Whirl in Northeast Minneapolis. What was happening in one warehouse would have covered what most cities considered an arts festival, but this event takes over miles. We just stayed within the limits of where the complimentary trolley traveled. Even with the trolley my phone tracked 7,000 steps for me yesterday. That’s a personal record (and comes with a cost, because I’ll be in bed for most of the week with the exception of one appointment tomorrow morning and Wednesday morning). My legs were having none of it. They were starting to spasm in the last building we visited.

I did pick up one little piece of art, which reminds me of a line I’ve heard over and over in my dating life:
20170522_132754

Genie In A Bottle – EnviroKlenz Review

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

Have you ever gotten on an elevator an nearly choked from the heavy cloud of perfume or cologne that is hanging there? The worst part is that sometimes the culprit isn’t even there, they’ve just left a toxic plume behind them. I also dread shopping and walking down aisles that contain cleaning products like laundry soaps, air fresheners, fabric sprays and softeners, surface and floor cleaners, and dish detergents. Can I hold my breath for that long? Maybe. But inevitably I also break out from hives. Why is that?

Well, I don’t just have allergies. I have SUPER allergies. I have mast cell activation disease. When I tell people that I’m allergic to something, inevitably they ask me why I don’t just take a Benadryl and be done with it. Boy, if only it was that simple. Among a huge list of things, I’m allergic to “fragrance.” You would not believe what “fragrance” shows up in. And the allergy manifests in my body by showing up as a skin irritant – a hive – because it’s floating through the air, or my skin somehow comes in contact with it, and as an asthma attack. For instance, I have gotten nasty bouts of contact dermatitis that have turned into skin infections, all because “fragrance” is one of the ingredients in Dermabond and Dermabond was used on one of my many abdominal surgeries. Who needs Dermabond to smell pretty? I’ve never noticed a particular rosy smell to it, to be honest.

I see friends who themselves have allergies and asthma or kids who do and then wonder why they have uncontrollable reactions, and it’s because they load up on fragrances and chemicals. I mix my own surface cleaners and laundry detergent because I want my environment to have the best foot forward for me. But sometimes it takes a lot of rinsing and a lot of vinegar and a lot of airing to rid just-washed fabrics of even the most simple hand-mixed detergent. If I’m not careful, leaving any kind of fragrance in my environment can mean that I’m covered in hives and I’m wheezing all night rather than sleeping.

Enter the EnviroKlenz Laundry Enhancer. I actually tried this product via three different ways: a traditional top-loader machine, an HE machine, and hand washing. The idea behind it is that it neutralizes any scent that may still be incorporated in the detergent so that any additional rinsing or vinegar becomes unnecessary. Most importantly it’s chemical free and eco-friendly. 

20170425_130136
For the top loading machine and hand washing, you add your detergent and the EnviroKlenz Laundry Enhancer to the water first, let the water fill half full, and then add the laundry. The HE machine’s directions will be followed with everything being added in the detergent drawer as usual.

20170425_130151
After I got through all of my cycles of laundry, I laid down in it. I breathed deep. I buried my face in it. And I couldn’t smell anything. I waited to see if I got any hives, either on my face or my arms, because those are the usual culprits, and nothing happened. I waited much longer to see if I got a whistle in my lungs. Nothing.

Later I laid down again (because I don’t spend much time out of bed), and again, I didn’t notice any particular scent, nor any hives or asthma. Also, it’s important to note that I didn’t notice a specific sour smell to the fabrics. Sometimes when I do laundry I miss the old days of the “fresh laundry” smell – that smell that we have all been sold on by the chemical companies, that their manufactured smells are “fresh” smells, but then everything swings to the opposite side of the pendulum and just smells sour and flat, as if it has never been laundered at all. My fabrics didn’t smell either way, just neutral.

By the way, if you prefer a powder product rather than a liquid to achieve the same results, they have you covered!

One universal product from EnviroKlenz that I’m especially excited to try next is the Everyday Odor Eliminator, which is safe to use on fabrics as well as hard surfaces including hardwood floors. Do you do yoga? Do you want to freshen things up a bit? Put one part Everyday Odor Eliminator to four parts fresh tap water into a spray bottle and spray down your area, then wipe down the excess. It’s safe for pet areas too, including pet beds! They lick the pads of their feet – do you really want them to lick chemicals? No! 

Here’s pamphlet further explaining more of their products, and of course, I have already set you up with a link to their website. We have become far too dependent on chemicals and EnviroKlenz is a safe way to scrub your environment of toxins.
20170425_130404
20170425_13043120170425_130449

Failure Or Fun? You Choose

I get a lot of flak for my dating life. Well-meaning friends and family have tried to keep up with the names of the men I’m dating, and I tell them not to bother, because they won’t be around long. I also deliberately avoid family photos. It means that I’m often the butt of many jokes, which admittedly sting from time to time. But my refusal to settle means that I continue to avoid divorce, too. I always end up with good stories.

Here’s the perfect museum for me, and people like me: The Museum of Failure. Of course this has to do with the world’s worst innovations and not relationships, but these are gloriously bad. That shocking facial mask?? OUCH. I had my face tased for a test, it’s not pleasant. I would not buy a device and do it willingly on a regular basis. What the what…?

And the Colgate lasagna…well, this year there was an ad for toothpaste that tastes just like a Burger King Whopper, but that was an April Fool’s joke. Trust me, you do not want this unless you are going to be single forever. And not talk to anyone. Ever. And not get laid. EVER. No.

If you haven’t had the pleasure yet, one of the items included in the Museum of Failure is the Bic for Her pens. It’s not because the pen itself is dysfunctional. Bitch, please – why the fuck would you market a pen as only “for her”? Talk about trolling, Amazon couldn’t keep up with erasing the “reviews” fast enough, so there’s a ton of material out there that you can search for, but here’s a taste.

Speed Dating a la Cab Ride

When I first moved back to Minnesota in the summer of 2015, I had some leeway in being able to be upright before I started to get paralysis in my face. I could be without my cane and go incognito for about an hour before it became obvious that there was something not quite right with me (besides being “weird” as some of my friends declared my personality). But as I’ve gone on without being able to get any assistance from doctors and the pressure in my cranium has increased, I haven’t been able to leave without my cane, and the left side of my face becomes immobilized much quicker now. I become invisible to the majority of the opposite sex. I don’t dress any differently, I still put on my yummy perfume oils that smell like sex and chocolate and I still do up my makeup just right. But my cane and the left side of my face are my instant cloak of invisibility.

The exception is middle-aged Somalian cab drivers. 

First, they find out if I’ve had children. I tell them I’ve had a hysterectomy, so I can’t have children. They tsk-tsk their tongues and then say, “That’s too bad. No kids? Maybe some day. That’s okay.”
2017-03-17 11.55.41

Then they ask me what I like to do for fun. I explain that I don’t go out much because I have to lay down a lot because of my health problems. They make the tsk-tsk sound again. “You have to get out more.”
2017-02-15 10.15.27
Sometimes they will ask me if I believe in “God.” I tell them I don’t believe in religion and I will not be with someone who pushes their beliefs on me. Some will tell me I need to pray about it; some will tell me they respect that and I don’t have to believe what they believe (but I’m a pretty suspicious sort of person and I always think men will say anything to get in my knickers). 
2017-03-01 12.02.22
Then they get to the point where they ask if I would like their number. They tell me that everyone wants someone to be close to – which is true. Some try to sell me on the point that in the Somalian culture, everything is provided for the women. (This is not at all appealing to me – good thing my face is paralyzed to keep things polite! I don’t want to be thrown out of the cab.)
2017-03-17 14.38.27
Sometimes I have to refuse the offers of numbers 8 or 9 times. This last one, pictured above and most recent, was a fun sort of guy, and we talked a lot about dancing. I used to do a lot of swing and salsa dancing and miss it terribly. He told me that he goes out dancing for 4-5 hours at a time and it would be great exercise for me. When I was having a hard time getting him to take no for an answer, it was becoming a sort of unreal conversation:
Him:  You should let me take you out dancing.
Me: I can’t. I need to have brain surgery.
Him: When will that be?
Me: I really don’t know.
Him: Tsk-tsk. You should let me take you out dancing.
Me: No. I can’t even turn quickly. Dancing could kill me. (I didn’t explain the whole pressure in the cranium and stroke and aneurysm risk factor – way too complicated.)
Him: It would be fun. We should get to know each other.
Me: I really have to concentrate on my next surgery for now, but thank you.

Thankfully most of my doctor appointments are within 10-15 minutes of my apartment so the awkwardness never lasts much longer than that.