A Slap And A Poke

It’s crazy being me. I say this so many times. I had mentioned the rare disease in my regular every other Tuesday get-together (most everyone has heard about it at some point), and a new guy had it in his head that he was going to school me on how he was going to cure me with diet and a holistic doc. He had the usual probiotic and chelation recommendations but also insisted I should eat sauerkraut. He couldn’t believe that said sauerkraut would instantly release histamines and give me hives. He also couldn’t believe that the Mayo would turn me down. I told him that I don’t ask for advice because I am always 1-7 years ahead of anything anyone can ever tell me, and I’ve never met anyone with my particular neurological symptoms with the mast cell disease.

<sigh>

On Monday, I was supposed to get a high volume lumbar puncture. That was the way it was ordered. This meant that the opening pressure was supposed to be read AND fluid was supposed to be taken off. When I was in the fluoroscopy room, I asked the radiologists and staff if they could carefully document everything before and after because my symptoms would change. They then offered to have a physical therapist evaluate me. I said great, yes, no one has ever offered that to me so I didn’t know it was an option. So they called the doctor to see if he would change the order.

However, when they got the doc on the phone, he changed the order and said forget it, only get the pressure reading and don’t take any fluid off at all. I was floored. First he wanted at least four vials (which is a lot), and then he wanted nothing?? I said that even if the opening pressure was normal, if they took some off, they would still see an improvement in my symptoms for a few hours. The doc said no way. Do not take any fluid off.

The radiologist hung up with him. He told me that he couldn’t go against this new directive and I had two choices: go ahead and get the pressure reading only, or stop everything and come back some other time. But here’s the thing: I only got this lumbar puncture because I called this neurosurgeon that I saw two years ago and begged for it, because I haven’t had my pressure checked since then. My current neurologist has been telling me I’m overdraining (even though no one has checked me) and I’ve been saying that the pressure in my head is high when I’m upright, and I felt like getting this check would help settle the fight. But the neurosurgeon wouldn’t agree to see me in the office. This was all I was going to get. So I went ahead.

I don’t metabolize Lidocain properly, so even though the radiologist juiced me up liberally, it wasn’t enough. It was also tough for him to penetrate my dura – possibly because of the sclerosing issue caused by my high histamine levels. After all of that pain my opening pressure came up as a boring normal level. Nothing to see here, folks. Except it completely rules out what my neurologist is saying about my shunt overdraining. My guess about why it’s not giving me a high reading is that the pressure lowers when I’m flat. There’s only been a couple of times when I’ve had high readings and I’ve been flat.

On Monday night, I ate some homemade spaghetti sauce and woke up the next morning to find that my entire mouth had swelled up, and the lining had sloughed off. I also had sores all over the inside. So tomatoes are now a big no-no. That’s a bummer because I make killer chili and lasagna.

Also kind of new in the past few weeks is another diagnosis. I’ve been struggling with this for at least the last 7 years as well. Doctors were telling me that I must be doing something wrong, blah blah blah. It’s super painful. I have hidradenitis suppurativa. I’ve had it come up in two different areas not close to each other and had to have “surgical intervention,” which makes it officially grade II. I’ll be seeing a new doctor Monday to talk about injections; it’s controlled by a medication that is similar to Imuran, which I was on in the past. The crazy thing is, I saw a very extreme case of it a month prior on a British show on Netflix called “Embarrassing Bodies” but had no idea that it was the same as what I had brewing. (Let me tell you, if you are fascinated by all things medical, that’s a good one to watch.)

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‘Scuse Me, My Kitty Would Like to Get Stoned

My ears perked up when I heard that this was a real product being marketed. They calmed down again when I realized that since Minnesota has the strictest laws in the country regarding medical marijuana that it’s likely I won’t get my hands on any until maybe a decade from now.

The problem: I have horrific abdominal pains because I’m having an allergic and autoimmune reaction to the drainage catheter of my shunt. I’ve had this pain since July 11, 2011, the day my very first shunt was implanted. The neurosurgeon saw the inflammation with his own eyes during one of my subsequent surgeries.

If it’s a good day, I can’t bear to have my abdomen pressed on. The last time my PCP prodded my abdomen, I had tears leaking out of my eyes – and not because I am conjuring the pain up. I also have issues with using the bathroom no matter what is coming out of me. I can only tell you that it feels as if someone has inserted a knife into any and all of my openings and is waving it around like it’s a #1 fan hand at a football game. If it’s a really bad day I also have waves of pain rolling over me. One time I was crossing the street to go back to my apartment and my sister was helping me carry a few items, and she heard me gasp as if I witnessed a really bad accident. Nope. I just was suddenly overtaken by the stabbing pains. And there’s just no way for me to predict when I’m going to get hit by an 11 pain (because according to Spinal Tap, that’s the loudest). Could be because I’m breathing.

The solution? I’ve been told I will not be given opioids because they would just mask the pain. (My answer is always yes, please, I would like to not have the pain.) Tylenol, Advil and naproxen sodium are child’s play. I’ve also been put on various anti-depressants and gabapentin. I’ve tried ice or heat. I’ve tried stretching out my hips. Meditation is probably good for something, but so far has not made me feel better about having the stabbing pains.

This product is being marketed for women with pelvic pain that is the result of endometriosis and/or menstrual cramps. I wouldn’t even have to consume something, just insert that capsule like a suppository for the kitty and then lie back and let it do its thing. If it can work for those issues, why can’t it work for my stabby-stabby pains? Maybe I wouldn’t dread going to the bathroom too. Sexual relations? I would say hell yes, it probably will give new meanings to “420-friendly” and “Netflix ‘n chill.” I can just see the Craigslist ad now: “Fun lady with a great sense of humor looking for my partner in crime to experiment with my totally legal 420 vaginal inserts. Bring some Funyuns, just in case.”
http://www.kevinmd.com/blog/2016/02/vaginal-marijuana-menstrual-cramps-really-work.html

 

Digging for Gold

This morning, when I retrieved my mail while I was waiting for my sister and her husband to arrive, I received a notice from the Social Security Administration regarding my disability appeal. They said:

*You have the ability to stand and walk without assistance. (That’s a blatant lie – I use my cane for everything.)
*You have the ability to use your hands and arms to perform tasks. (Apparently it’s not a requirement for me to see what I’m doing.)
*You are able to get along with other people for short periods of time. (It’s called Minnesota Nice, bitches.)

“We do not have sufficient vocational information to determine whether you can perform any of your past relevant work. However, based on the evidence in the file, we have determined that you can adjust to other work.”

What would be really helpful is if they included a list of employers who had job offers for me and would not require me to be upright at any time. I can’t see well enough to travel to a location outside of my home, and most employers at least want an interview. So their insistence that I work “somewhere” is pretty weak, considering they don’t have an prospects lined up for me. (I don’t want to hear, “That’s how they do it.” I know they’re assholes.)

The next step is for my attorney to file a request for a hearing, which I understand takes 12-15 months to occur. In the meantime I’ll continue to go to doctor visits and try to find someone who can put a name on this disease and tell me what to expect.

This morning I went to the surgeon’s office at the U of MN to have my wound checked. When he put a fair amount of pressure on it, I started yelping, which led him to believe that there is still some pockets of pus hanging out back there.

Rather than going through the process of shooting me up with Lidocaine and slicing down deeper and purging out more junk, the surgeon took the stick end of a swab and used that to dig around in my wound – think of it as a meat tenderizer, he just kinda made hamburger out of my flesh – without any topical numbing whatsoever. I broke out in a sweat and I had tears rolling down my face. I knew I had to lay still but I was also fighting to get away from him and just make the PAIN STOP.

He said he was stepping out for a few minutes to allow the bleeding to die down; about 10 minutes and a good, sobbing cry later, his nurse came in to re-dress the wound. I’m glad I had that time to myself.

 

 

Netflix ‘n Chill

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

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

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

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

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

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