HS

My Milkshake

Posted on by akiwifreund

Just a little update: I was finally diagnosed with ankylosing spondylitis in May, and my case is fairly advanced. I have growths all along my spine and just got confirmation on Friday that all of the difficulties I’m having with my hands (horrible pain, swelling, tenosynovitis in every tendon, and cysts) is also likely from the AS, as I have grown to suspect. Humira is out for treatment because it accelerated my hidradenitis suppurativa, so I’m going through testing and trying to get approved for a different injectable. I’ve already been denied by my insurance company because the co-pay is $1,523/month so we’ve started the paperwork for a patient assistance program.

I also flew back to Minnesota twice to get two different laser treatments for my hidradenitis suppurativa. The dermatologist who is treating me started experimenting on another patient and mentioned it to me when I was moving away last year. I tried this as a last-ditch effort because absolutely nothing was working. Boy, what a difference! After the first round I got about 60% improvement, but it took about 3 months to see it. I’ve got about 75% improvement now after the second treatment. I know I’ll have to go for a third treatment but I’m hoping to wait until after the snowy season, which means I’ll have to postpone at least until April/May. This is a really, really difficult disease. I couldn’t convince any of the local Phoenix dermatologists to use the same method, so now I have to spend a fortune in travel and hotels (can’t stay with family because I’m allergic to their animals).

During all of this I had to fire my pain doctor for dropping the ball in a major way. I finally got into Barrow again with a new neurologist (I really liked the resident and I hope he doesn’t burn out; the doctor seemed suspicious of me because all of my stuff is so weird, but hey, I think neurologists are pretty much useless, so right back at ya, buddy). The next thing I think I have coming up is my teeth. I’m having a lot of issues with the gums and pain with two teeth, and I noticed a growth that I thought was just some swelling initially. Mast cell activation syndrome really fucks with all of this.

So just in the past week, I had some perverts knocking on my virtual door.

I still have a notice on my FetLife profile that I’m not participating in any activities because of health issues; that includes parties, one-on-ones, texting, role-playing, etc. I will say hello and that is it. In all honesty, I’m sick to death of online stuff anyway. I much prefer real life. But this is what I got in my inbox:

“A nice smile nice conversation nice lips nice eyes nice hair nice tits nice pussy nice ass nice personality all boils down to one thing. Can this person make me orgasm and use rope to tie me up and take advantage? After having long stressful days and weeks and unfulfilled sexual satisfaction a person just wants one thing. With me it’s just straight to the point. No need she pretending to be the princess or the dominated woman that you pretend to be and your outside personal business and work life. I didn’t know what what’s going on until I made her come and orgasm over and over again until she blanked out several times. Are you then figure out what was going on, suggest a few commands and before you know it she was coming on command. I’m straight to the point very blunt. I host everything. I get a hotel or motel room here in Tucson You show up in the proper attire and the session begins just that simple. No strings attached just you and I and you getting what you want. All I ask is give it one try. After that if this is something that you don’t want then you cut the string and this is all forgotten about.”

[I’m just going to say here that it’s every man’s fantasy that his dick has magic juice. Seriously. Every guy thinks he can make a woman black out or blank out. Hahahahaha! Or this Jedi mind trick shit – cum on command. Fuck you. Fucking lazy shit.]

Me: Kind of a bummer you went through all the trouble of copying and pasting that without reading my profile.

Him: Sweetheart I read your profile, how was I or anyone to know how you are now? Your last entry was 5 months ago. 
Note: [His thought process is that my request to be left alone doesn’t matter. His dick has magic juice. P.S. – I hate being called sweetheart when I’m calling him out on shitty behavior and we don’t know each other.]

Me: That should be a clear indication that nothing has changed. Sweetheart.

Him: Maybe a person got off FetLife because they lost their account information. Maybe the person wanting a break. Maybe a person was in a certain situation but things got better but just never updated.
[Translation: Maybe I have a magic dick and if you get some of my magic dick juice, you’ll be cured. I will then claim that on my profile – and in this copied and pasted paragraph for the next victim. Whatever is going on, though, I’m not listening, I’m not listening, I’m not listening, I’m not listening, I’m not listening, I’m not listening…]

Me: Maybe we’re done talking now.

* * * * * * * * * * * *
Crickets after that.
* * * * * * * * * * * *

I accepted a friend request from a friend of a friend on Facebook. It seemed like we had the same political leanings (something I ALWAYS check for now) and he might possibly know my mom and stepdad – he knows one of their friends, at least. I don’t accept a lot of strangers. So he messaged me immediately.

Him: I couldn’t resist your beautiful eyes! And I am working on my hesitancy with beautiful red headed women. Frightens me some….love to look, but never touch.

[Jesus H. So he puts redheads up on a pedestal of weirdness. I wasn’t even going to bother telling him that I’m bald. None of his fucking business. I’m pretty sure he had already printed off a picture of me at work and was taking my picture into the bathroom with him to wank off.]

Me: I appreciate that you want to appreciate certain features, but you should do that on FetLife. Once you fetishize a person, you miss the red flags and seeing them as a whole person.

Him: That’s your first conclusion of me based on one comment? Kind of discriminatory!

[WTF. He immediately opened up with his fetish.]

Me: You don’t understand discrimination. You approached me. Redheads aren’t different beasts.

Him: I did not say you or they are…I only indicated my opinion.

Me:  Look, you obviously have a fetish. It’s okay. Own it. This whole thing about being injured because I recognize it is weird. Go out and explore all of your kink.

Him:  I do. It’s the enjoyment of discovering all kinds of people and their diversity.

Me: Fine. But I’m not on FB for fetish.

Him: Fantastic, me either and I will happily delete contact with you, while at the same time reinforcing my fear of redheads.

Me: Haha! Baby.

[So, he hit me up regarding his fetish, then claimed he didn’t have a fetish, then told me that our only purpose of contact was for his fetish and redheads are back up on the pedestal. Yippee ki-yay, motherfucker.]

I Don’t Recommend It

Posted on by akiwifreund

Disclaimer: This post contains very descriptive accounts of doctor appointments.

I’ve had quite a long break from posting. My right hand is still giving me quite a bit of trouble and likely will for the rest of my life; the diagnosis is CRPS (complex regional pain syndrome). I’m in the 10% of patients who haven’t experienced a trauma or surgery and the disease developed spontaneously. I go to occupational therapy twice a week, which includes such strange things as identifying right hands and left hands in flash cards and hiding my right hand behind a mirror while I perform tasks with my healthy left hand and trick my brain into thinking it’s my right hand doing them. The idea is to try to keep my brain from shutting down the right side of my body. On really bad days, even air hurts when it blows across my hand. It’s a really fucked up disease.

For the past two months I have also been getting treatments for my hidradenitis suppurativa – acronym of HS (otherwise known as horseshit). It is known as the worst (strictly) dermatological disease, and normally it occurs in areas where skin touches skin. However, mine also appears on my face, neck and back of my head. You’re welcome to look up this condition if you aren’t familiar with it, but every patient is different. It’s an autoimmune condition that causes inflammation and tunnels of infection and lots of scarring. My worst area by far is in my groin. I have stage II because it’s in two or more areas of my body and I’m getting some bigger tracts. Every day I have between 20 and 50 infections. The bacteria is generally strep bacteria that forms anaerobically under the skin in tunnels that can be as small as a grain of rice or as big as a grapefruit. Sometimes I can’t walk.

My HS wasn’t too bad until I started on Humira shots, which I was taking for 15 months. I was allergic to those, and it actually accelerated the disease for me, which I am now hearing from a lot of patients, especially stage I and II. From what I can tell, the medication is actually accelerating the disease for about 30% of patients, not helping or hurting about 40%, and helping about 30%, and the majority of those helped are stage III, the worst stage.

So the first treatment was a topical acid I had to wear for 24 hours, and then sit under a blue light. I had a male nurse who asked if I preferred a female nurse, but I told him fuck it, nearly everyone has seen my ass by now. He didn’t know the proper name for stirrups. I got propped up in the stirrups, and then he set an old-fashioned tap bell beside me, saying, “If it gets to be too much, you can ring this and I’ll come and turn this off, but try to get through it.” I also got a dollar store hand fan, I think to make me feel better psychologically. He’s trying to be all nice and polite while my girl parts are all on display and ready to be cooked, and I told him, “Look, I’m going to sing. I have a feeling this is going to hurt. I have to sing.” He said that was fine and stepped out after turning on the timer, automatically 16 minutes.

So, the first minute was fine. No big deal. Dollar store fan? Who needs that? Not me!

By minute two, I felt like everyone had turned on their curling irons and then set them on my girl parts. Jesus god. What to sing?

At minute four, the nurse came back in and asked how I was doing. Somehow Satan had slipped into my vocal cords and I told him I was done. I can tap out, right? He said almost everyone didn’t notice as much when they got past minute seven. FINE. FINE. THREE MORE MINUTES AND IT WON’T BE A BIG DEAL.

He totally lied to me. Fuck, fuckity fuck fuck. Singing, still singing. I can’t remember what.

He came back in at ten minutes. Very cheerful. He must have felt my look of betrayal and mistrust. He told me that I had made it this far, I shouldn’t tap out now.

Still really hot. Fire of a thousand suns. The dollar store fan is just making everything feel like I’m having sparks from welding fall on my delicate bits. How do people do this to their faces? Still singing. Could have been the Star Spangled Banner for all I remember.

Finally the blue light went dead and the very cheerful nurse came back in. Turkey’s done! He got everything put away and let me down off the stirrups, but it was so fucking painful. I told him he gave me fire crotch. He laughed but stayed more than arm’s length away.

This all went faster than was anticipated, so I had to wait a few hours for my transportation (we can’t make changes day of). Sitting was torture. Oh. My. God. I basically had a 2nd degree burn and it felt like I took a brillo pad to it besides. I had to go into the bathroom to pat cold water on it once because oh my god. And I was still 35 miles from home. That was a really uncomfortable ride home. I had an ice pack on my goodies for 3 days. After going through all that, I was told I wouldn’t know if it was helpful until 3-4 weeks after the procedure.

Oh, but we’re not done.

I don’t think the blue light worked. I contacted my dermatologist in St. Paul because she had recommended laser sessions right before I moved, but I never got the chance. I had to fly up to see another doctor, so I scheduled an appointment with her as well to get treated.

Unfortunately, anything in the Lidocaine/Novocaine family doesn’t work on me, or at least, not very well. They had a topical for me that sat for about 20 minutes that was a combination of meds, but unfortunately, it didn’t really do a whole lot.

They didn’t have enough goggles for everyone, so I had stickers over my eyes. The first laser basically acts as an aerator, poking a bunch of holes in my skin. My doc thought it would be the more painful of the two. But no, it was the second one that made me swear. A LOT. The second one was like a light saber. Or some kind of a hot knife. There may have been a patient in the room next to mine who heard way more than they ever wanted to.

The doc and nurse were worried that I would be in pain for a few days after, but honestly I was okay as soon as those damned lasers stopped searing my skin. I didn’t get the same fire crotch that I did with the blue light.

The doctor indicated that if I wanted to try another session, I could book at another office where they had nitrous. Yes, please! I had that for my dental work when I was a kiddo, I know at least that will get some of me numb(er). And I do want another session because after only one week my lesions are smaller and I’m not getting new ones. It’s a motherfucking miracle.

I really, truly resent having to go through this. None of this was a problem before I took the Humira injections. I have had to completely change my wardrobe, buy tons of medical supplies, and halt my sex life. Everything is made even harder because I only have one fully functional hand.