Save The Date

Statistically, Minnesota is one of the worst or the worst state in the U.S. when it comes to wait times for disability processing. I didn’t know this when I relocated from Arizona to Minnesota to try to figure out what was going on with my body. This article from the Minneapolis Star Tribune states the average wait time is around 570 days from filing to have a judicial review. I just got confirmation that my hearing is set for March 28th, which will put me at about 770 days of filing the appeal (and almost 3 years to the day of filing the initial claim of disability). The back log just keeps getting worse.

I’m not sure I would have done this any other way. As horrible as it has been with trying to get doctors to take care of me in Minnesota, I did finally get three diagnoses that I have been missing for years in addition to what I already knew. I forget what my count was when I entered the state, but I’ve seen 64 doctors since July of 2010. This has not been an easy process. There is no clear path.

Thankfully my allergist has already agreed to fill out paperwork for my hearing, and my counselor has as well. I will be meeting with my primary care doctor and pain doctor next month to ask the same from them. I’ve been rejected by every neurologist and neurosurgeon in the area as well as banned in writing by the Mayo, and I can’t go out of state because I’m on Medicaid so it’s not allowed, so I’m not quite sure how that is going to be looked upon by the judge. There’s absolutely nothing I can do about that.

One incredible resource I wish I had stumbled upon before I started this process but am eternally grateful for is the blog How To Get On. There are sooooooooo many links/ideas/resources/testimonials that it sometimes boggles my mind, and I really can’t imagine how many man hours it took her to put it together. It’s unfortunate that the author sometimes gets reported and blocked by Facebook for either posting “too much” (seriously??) or for questionable posts (again – say what??), so we have to keep it circulating so as many people as possible benefit from its content.

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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.

Ring Around The Rosie

I don’t know if you knew this, but the old nursery rhyme “Ring around the rosie, pocket full of posies, ashes, ashes, we all fall down!” is about the black plague.

Or, actually, it isn’t, according to Snopes.

I think about it this time of year, while I maneuver my way through hoards of people who don’t cover their mouths when they cough, or if they do, they immediately touch the door handle I was just reaching for. The Plague. Everyone is just waiting to infect me, I know it.

I’ve been having a hell of a time just getting a flu shot. Until two years ago, I never got one. Then they started making an egg-free version, meaning they didn’t grow them in an egg base as the very cheap food source. Now they also make the shot preservative free. It’s the holy grail for me since I’m allergic to raw eggs AND preservatives. However, my PCP’s office won’t order it for me. They insisted I call my insurance company, but the insurance company told me they couldn’t tell how it would be billed (as in, would there be a special code for an egg-free and preservative-free flu shot?), so I’m supposed to get the code from the doctor’s office. The PCP’s office doesn’t know how to bill for the shot unless the insurance company knows how it should be submitted, otherwise I’ll have to pay out of pocket. So…………

Scratch all that. I just talked to Walgreen’s, and they have an egg-free, preservative-free flu shot on hand, and I just have to show proof of my medical assistance. So guess who’s getting a flu shot from Walgreen’s?

This is the reason why not having preservatives is a big deal.

I’ve been giving myself Humira injections since August 30th to combat hidradenitis suppurativa outbreaks that I’ve been experiencing for about the last 8 years. It’s another autoimmune disease that up to around 2 years ago, not much was known about. I’m not going to spill all here, but trust me when I say that it’s super, SUPER painful. And doctors were cutting infections out of me, but because of mast cell activation syndrome, the lidocaine they were using wasn’t numbing me, so I would feel every slice. Before the HS was diagnosed, all of the doctors didn’t understand why I was getting the infections, and they thought that it was something that I was doing wrong – not bathing properly (HA!), wearing the wrong clothing (HA!), shaving inappropriately (because I don’t grow hair – ???? – HA!).

The treatments for HS include getting monthly injections of steroids in the normally infected areas – which I don’t know anyone who would go for that – or using oral and topical antibiotics, which I’m allergic to. The last resort is Humira.

The bitch of it is that I’m also allergic to the Humira shots. On August 30th I did the first loading dose of 4 shots. I didn’t have a reaction until 10 days after that, so it took me a while to catch on, and the reaction showed up only on my legs and not my stomach.

So I thought, okay, there was no reaction to the two shots in my abdomen. I’ll just get my abdomen with the next two shots. Besides, doing the injections in my legs hurt like a bitch. But then:
20170915_190958(Keep in mind I never show my stomach to anyone. The zipper scar you see running from my belly button is the extra large cut my neurosurgeon had to do on 12/21/13 when he didn’t have anyone assisting him on that surgery, which is the one where he finally saw my abdomen with his own eyes and remarked how it looked like a war zone inside and acknowledged my allergy to the shunt.)

So these two welts showed up the same day as the injection, and hung around until the Monday after – about 5 days. After the itching stops the welts turn into huge bruises.

I called the manufacturers of Humira to report my reaction. I knew immediately what the problem was before I even called. They make the shot shelf-stable for up to 14 days so that if you have to travel or lose power, you can still use it without it needing a refrigerator. Conclusion: preservatives. Specifically, there are 8 of them in the medication. When I talked to the company, they said the FDA approved them ONLY to make the formula with the 8 preservatives. It’s possible they might release a formula with only 2 preservatives in 2018, but they are still waiting for the final approval from the FDA. They cannot allow me to take another form of Humira with less preservatives because it’s only approved for use in the U.S. with the 8 preservatives.

I have to stay on it. If I go off of it, it immediately loses its effectiveness by 20-30% for the rest of my life within the first 2 weeks of discontinuing it.

Humira does lower my immune response. I’m already compromised because of my non-existent IgG3 and IgG4, so I have to be extra cautious. I’ve noticed that I’m much more fatigued than normal while I’m on this juice. The maid doesn’t get a whole lot done these days, know what I’m sayin’?

Usually my stomach doesn’t see the light of day unless it’s the surgeon operating on me (you can see another horizontal scar on the right pic above), but this is the reality of the mast cell disease. If you don’t know me and you see me clawing at my belly in public, now you understand why. I really do want to rip my skin off.

Two days ago I woke up for another appointment and my entire upper half was covered in hives. In this pic you can also see the shunt protruding because of all of the scar tissue that is growing around it. The rate it’s growing is highly unusual; the doctors are seeing in 3 weeks what they would normally see in 20 years. But I have no freaking idea why I woke up with the hives because nothing in my routine has changed as far as I know:
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One thing that ended up on my good list is that I discovered that I’m not allergic to potato chips! Some of the other MCAS patients were discussing them in a group and so I took a chance and snuck some at a party – plain, salted – and didn’t develop hives, and didn’t lose the inside lining of my mouth or develop sores. The other crazy upside is that because I have POTS, I’m also encouraged to eat higher quantities of sodium so my blood pressure doesn’t dip too low. So, people, I am rediscovering Ruffles! I haven’t had them for decades! But they have to be strictly plain/salted, no other flavors including vinegar. It’s a nice change from the 8 foods I’ve been stuck with.

That Time I Went Back To Arizona

About five months ago, I decided fuck it, I’m going back to Arizona to visit. I miss everyone and everything. A few weeks after that, I figured out what started this whole thing with my brain. (Yes, I mean figured it out, not the doctors.) I knew I’d have a place to stay with friends, and eating out was out of the question, so I’d just have to come up with a plane ticket. Done. It might be my last opportunity to travel depending on how much worse the scar tissue and the brain damage gets – literally no one fucking knows.

I have about 35-40 people that I would have liked to have seen, but I was only there for about 8 full days, so it was impossible. One night a bunch of people came over and we had a little potluck and hung out. The rest of the time everyone was gracious enough to drive to me, or I took the short bus to see them.

It was my first time traveling without being able to drive, either at home or my destination. First of all, nothing can happen on a whim. It took me about 2.5 weeks to assemble all of my medications and a vog mask, and that included negotiating with the insurance company to get an override on 8 of my medications that would have needed refills while I was gone but couldn’t get in Arizona – they can only be done in Minnesota, because I’m on medical assistance. I also had to make a trip to a compounding pharmacy.

Then the day before I left, a medication I had been trying to get for about 7 weeks was finally approved, so I had to go and get that – but it was such a high volume that there was no way I was going to be able to fit it in my luggage, so I decided to start it after my return. Every time I have to go somewhere, I have to request a ride from Metro Mobility – but I’m only allowed to call one to four days ahead of time. I can’t call on the same day. So I was on a dead run (or as much as I could have been for someone who is half blind) up to the day I left.

It was so worth it, though. Arizona was all blue skies. As I’m writing this, we’re getting rain in Minnesota.

Hopefully my friends know I love them, but I forgot to take pictures of them. Apparently I shoved them aside and made a beeline straight for their animals, which I am deathly allergic to. I did a little planning for that too. One of my doctor visits beforehand was to get my regular and steroid inhalers refilled so I could start on those prior to my visit. I also packed extra diphenhydramine and Claritin (above the 12x daily dose I already take) in anticipation of the fur balls, and every time I came home from a house with pets I changed clothes and put the contaminated clothes into a plastic bag and did a big scrub down.

First were the rescued baby kittens, all black except for a few white spots on some bellies. My friend was just grabbing and distributing them around the bunch of us, and I just happened to get my soul mate – a little one who has neurological problems. It just wanted to get as close to me as possible so it curled up tight against my neck and slept. Once in a while I felt it have tremors and twitches that were not at all normal. I was laying back so the fluid wasn’t trapped in my cranium, and I swear, it was heaven. I wanted to stay there forever. At one point the kitten woke up and started putting its little paws right on my mouth. (I’m in the blue.) I did get hives, but they may not have been as bad as they could have been because apparently the night before the kittens pooped all over each other and so they had to have an impromptu bath, which they loudly protested.

Back at my host family’s house, a large lizard showed up on their property wall. Usually they do not get this big!
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I was lucky enough to be able to spend two afternoons with my friend and his wife. He was instrumental in getting me to be active on Twitter after reading my blogs, which has led to guest spots on other blogs, podcasts, and our Blab series (now deceased because they couldn’t figure out how to make money off of the platform). These two are quite funny; the male, bright orange, is loud and LOVES women. The female, green, is a lot more quiet but likes to ring her bell ball to communicate. The male will say both of their names together and then swivel his body from side to side when he is showing off or pleased.
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Next were my good friends including a couple and their live-in mom. They were usually the first ones I would call when I needed a kitty fix while I lived in Arizona – they had three kitties I knew well. Within the past year and a half they ended up adding another cat and dog under pretty terrible circumstances. Their friends relocated from another state; my friends didn’t realize there was drug addiction and abuse happening. The kids have since been placed in foster care, and the animals were traumatized. Actually, the really big, long, grey kitty seems mostly okay, but the dog has suffered terribly.

When I came to visit, I was told to expect him to pace and whimper. I was also told that I shouldn’t expect him to eat, or approach me, because anyone else who has visited hasn’t had any success even though they were animal lovers too. So this poor, beautiful dog did start pacing. I made sure that I moved slowly, and told him that he was a good boy whenever he paused to look at me. Then I put two treats on the back of the sofa and turned away from them, and eventually he worked up the nerve to get close enough to take the treats. Then he paced close enough to smell my hands while I wasn’t looking, and then quickly paced away again. While this was going on, he was carefully watching how I was interacting with each cat, making sure I wasn’t mean. A couple of times I closed my eyes. I suspect my friends thought I was tired, but I was actually sending him messages of love.

We sat down to dinner, and I couldn’t eat part of mine because of an allergy, so I put it down on a plate for the dog. Another win! And he came over multiple times to sniff my fingers. I made sure again to not be aggressive. I told him over and over he was good.

I stayed long enough to go on his last walk of the evening, which he loves. He wasn’t even confused about there being a strange lady with him on the walk until one point where he crossed over to me and then suddenly was like, “Holy shit, who is this???” and then quickly walked on the other side of the sidewalk.

At the end of the night I was saying goodnight to everyone (read: handing out the last pets to the pets), and the dog was near when I was petting the pretty calico. He was again watching very intently to see if I was being mean. So I carefully got down on all fours and made myself small, put a treat in my hand, and put my head down, and HE ATE OUT OF MY HAND. Everyone was stunned and thrilled.

My friends ran me back to where I was staying, and let me know that when they returned home, all of their animals were lined up at the door, as if they were waiting for me to return. They had never seen that happen before.

The last evening before I flew home, I was able to visit with a former co-worker whom I had the longest work history with – something like 8 years together on our team. I also remember when she had her kiddos – vividly! Our conversation went something like:
Her: “I feel like something isn’t right.”
Me: “You’re in labor. Go have your baby.”
Her: “I’m not really sure. I’m going to wait a little longer.”
Me: “I don’t think you should wait. I think you should go.”
45 minutes later: Baby.

They have two cats and a dog. I failed to catch a photo of the dog, but she was a sweetie. The white cat, Gracie, is quite elderly now, and doesn’t put up with anyone’s shit, including the dog’s. The kissy photo was taken right before Gracie got pissy about the dog bothering her. Seamus is a year-old instigator of trouble and very handsome.

Obviously the mast cell disease is preventing me from being a crazy cat/dog/bird lady, so I suppose I should be thankful.

Anyway, it was really difficult to come back to Minnesota. The night I flew home, my friend’s little boy called me and told me to come back. Sheesh, kid – right in the feels.

The Tender Trap Of The Gender Gap

I received three letters in three separate envelopes from the state medical board. I tore the first one open; a single page with the name of the respondent at the top and an official signature at the bottom. “Dear Miss: We are writing to inform you that your claim will not proceed because there is not sufficient evidence…

What the board was telling me is that my claim against three doctors is being denied. They saw my facial droop, my staggering walk, my shaking legs, heard my stilted speech, and then saw it go away when I tilted my head to manipulate the CSF in my cranium, and they wrote in my medical records that I was making it all up. It took me close to a year to get the correct testing after that. When I had everything together, I bundled it and sent it to the state including the disc with my complete MRI showing my brain had collapsed. I sent documentation from my previous surgeries. I outlined how their notes directly affected my life – both by delaying my care, and because I was denied by the Undiagnosed Diseases Network based on their notes.

The only conclusion that I can possibly come up with is that I’m a woman. Who could believe me? Why not attach a hinge to my cranium so I can flip my lid open for everyone to see, and then maybe, maybe, they will consider the notion that I’m telling the truth?

The irony is that this very place where these doctors work tweeted an article today about how there’s such a big gap in women being tested in healthcare trials, and how there’s still a huge gender bias against women when it comes to our symptoms being recognized and validated. THIS EVEN HAPPENS IN LAB RATS. So they are willing to admit it happens,

but

not willing to admit it happens with them.

Here’s another article that speaks directly to the phenomenon of being a woman in the healthcare system. Women are “emotional” and therefore shouldn’t be believed. By the way, female doctors can be just as unforgiving as male doctors.

I’m going to take a little time out to compare and contrast. I have a male family member who had rotator cuff surgery when he was a teenager, at least 13 years ago. He just had to have an EMG of his arms and possibly legs. I was explaining to him what to expect since his doctor’s office didn’t do a very good job. Let me emphasize that there’s a 13-year span between those two medical events. Yes, recovery from rotator cuff surgery isn’t pleasant, and an EMG isn’t pleasant.

In comparison, I’ve had 10 brain surgeries, 12 abdominal surgeries, 4 infections cut out, 7 crowns, 10 spinal taps, 2 EMGs (including my face), a year-long CSF leak, and a spinal blood patch in a 7-year period. For a lot of these I couldn’t have Lidocain because my body doesn’t metabolize it, and it’s the same for morphine. So every time I was poked or sliced or stitched, I felt it. I also tore the capsule and the tendon in three places in my left shoulder (but couldn’t get surgery because of all of the scar tissue I make). I’m also horribly allergic to my shunt that is still implanted and runs from my brain to my abdomen, so I constantly feel like I am being stabbed in my lower abdomen.

This male relative’s doctors immediately jumped at the first sign of his trouble. The help he has received is in stark contrast to how I have been treated, which is to be called a liar and to be treated as a hysterical woman. He was also considerably nervous about the EMG. I tried to reassure him that if he could get through rotator cuff surgery, the EMG would be much easier. Seriously, I would trade that CSF leak with just about anything. An EMG is a walk in the park.

So, what exactly do women have to do to “prove that they are in as much pain as men”? Shouldn’t it be the other way around?

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.)

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. 

Back To Life, Back To Reality

I had the pleasure of planning my arts high school’s 25th reunion for my classmates. It’s difficult to explain, but our school was unlike any other that most people have attended. It’s a public school and we came from all over the state of Minnesota, we had to audition or submit portfolios as well as letters of recommendation, we lived on campus like a college, and we created life-long friendships (most of us). I’m not saying it was without flaws. But going to college was a complete let-down because we already did it all, and our skills were senior level when we went to our respective schools post-high school.

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The reunion officially lasted nine hours. We started with performances, some dancing, I handed out random door prizes (which included ramen, Pop Tarts or macaroni and cheese plus sticks of margarine but NOT milk – because we never had milk; also Nerf guns, and cassette tapes such as Crash Test Dummies, The Sundays, REM, M.C. Hammer, Bullet Boys, anything that would have been released by 1992). Then we headed over to a pub that served microbrews and sausages where whomever couldn’t make it to the portion at school hung out with us there. We were officially done at 10 pm, but some people wanted to keep partying, so they went back to one couple’s hotel room and kept it going until 4 am. I didn’t – I was toast.

(By the way, the picture with the classmates trying to pull open the doors is something I didn’t find out about until later. They were giving themselves a tour, not realizing that they locked themselves in an area and they would have to wait for someone to randomly walk by and let them out.)

Our turnout was excellent. My classmates are literally scattered around the U.S. and the globe. I haven’t lived in Minnesota for 20 years and would have been counted as an out-of-towner if I hadn’t been forced to move back because of my circumstances. I know that I have classmates in Sweden, South Africa, the UK and France for sure, but I’m also sure that I’m missing some places. So to have this many show up is considered a small victory. And everyone was helpful, mostly sober and didn’t want to leave.

When I was attending school here, my major was theater (located directly to the right of the dancing space where everyone is slapping hands and their shoes are off). I discovered there that I had a natural affinity for organization and detail. So that was the reason that I gave everyone for wanting to organize the 25th reunion.

But I had an ulterior motive.  Two years ago, and even continuing through to today, a lot of the classmates that traveled back for the reunion (either by driving or flying) have helped me. When I relocated from Phoenix to St. Paul, they contributed to a fund. Sometimes they organize and send me gifts. A lot of them have their own hardships to worry about, so I appreciate their contributions even more for that reason. So the fact that I could work out every damn detail for them and all they had to do is show up was great – and even better that they all had a really great time and didn’t want to leave. 

Unfortunately, I did have to ask for some work from a few of them, but being the wonderful people that they are, they stepped up and said of course, and blew the rest of us away. The school was under great scrutiny and was nearly closed, and I had gone to all of the state senators and representatives, asking them to come to about an hour and a half of our reunion to meet us to see what had become of one of the first graduating classes from this school. One of the representatives, Mike Freiberg, happened to be a classically trained pianist and agreed to accompany our opera singer – and wow! It was fantastic! In all, we had two writers, a violinist, an opera singer, and a dance instructor.

Pictured below is an example of many of the lockers – students are allowed to paint them however they choose. Also, the woman in the phone booth is one of the readers from the performances. The phone booth is an infamous one; it was down the road from us and is from before the advent of cell phones, and we all used to walk down the road to use it when we wanted privacy. 


So for the week after the reunion, I stayed in bed. It was totally worth it. I love these people. Some of them I’m lucky enough to see frequently, and some I suppose I’ll have to wait another 25 years to see, but we know we had a unique experience and kinda feel sorry for people who had to drag through regular schools. We had a completely amazing experience for our junior and senior years.

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Today, I had a doctor’s appointment for an outpatient surgical procedure. I’m not going to go into detail for what it was. I was just dreading it. So I got the usual notification from the cab company that the driver was on his way, and then I got a notification that he was outside. So I went out. He wasn’t out there. Sometimes it happens that the notification comes about 60 seconds before the cab. I wasn’t alarmed.

However, after waiting for about 12 minutes, the cab still didn’t show. Today the temp was 91 degrees Farenheit, and Minnesota is humid this time of year. Also a problem: My high-rent building’s front door was vandalized, so I can’t actually get in with my key. If I want to enter the building, I have to walk around to the back, which is the equivalent of walking the length of a city block because the spaces between the buildings are fenced and locked off. I also had no idea when this cab was going to show. So I called the cab company.

They claimed he was five minutes away. I have a GPS tracking map and he hadn’t moved. I explained that the heat makes my condition worse. I also can’t go back inside because I can’t go in the front. They told me to just wait. This is what happens to me because the cerebrospinal fluid builds up in my cranium because my shunt hasn’t worked for two years:

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Many times my facial droop has been mistaken for myasthenia gravis. I can assure you that I do not have that. I can actually slosh my CSF around, and when I tilt my head parallel to the floor, the paralysis goes away within seconds. Also, my face is not swollen. The muscles on the left have relaxed because they are paralyzed.

I was actually stuck out in the heat for a total of 35 minutes. When the driver finally got there, he first tried to force me to cross the road to him. I can’t see very well like this – this is as far as my eyes will open. When he finally came to my side of the road, he parked up the street so I had to walk to him, even though there were spots open in front of me. When I got in the car, I asked him to turn on the air conditioning. He told me I had to wait until he “got going.”

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When he finally did turn on the a/c, it was at the lowest setting to spite me. I had to tip over in the back seat to take the pressure off of my head, which at that point was absolutely unbearable.

When I got to my appointment, they took me back to the exam room and got me on the table. However, I wasn’t doing so well. The nurse and the PA both said I looked grey and the PA reclined the table while the nurse ran to get me some sugary drink. I whipped off my wig and they slapped wet cloths on my neck and head. I could tell my pulse was all over the place, but I knew this wasn’t a blood sugar problem – those feel completely different to me. [I am getting checked for POTS next month.] When I got up from the table, I saw that I had completely soaked through the paper with my sweat, which was disgusting, but they said it was an obvious sign that I was in distress. We made sure everything had returned to normal and we got on with it.

I absolutely wrote up a complaint to the cab company, with details and times. They have a contract with my insurance company, and if this driver can’t handle medical rides, he shouldn’t get them. Period. 

Gender Bias: It’s Not Just for Work

Everyone is going crazy for this article that was published about a man and his subordinate who swapped names as an experiment to show gender bias in the workplace. Really, it’s not so much an article as it is a series of tweets, but you get the full picture. And REALLY really, if you’re a woman and you’ve worked outside of the home or if you’re a woman and you’ve been outside of your front door, you know how this went.

We Swapped Names and I Was So Surprised (Said Every Male)

But if you know anything about my blog or about me, I write about my experiences as a woman in the American healthcare system. Now I’m a really concerned woman as I watch a very out-of-touch bunch of Republican-led lawmakers work on dismantling the social safety nets that will help keep me housed and fed as a disabled adult with no chance of working (at least, not now, for as long as I’m allergic to the shunts they keep putting in me).

A huge barrier to my care is the fact that I’ve seen 57 doctors in 6.5 years, and a good number of them have told me to go away and not come back. My disease and symptoms scare them. They can’t diagnose me. I can tell them exactly what’s happening with my body, but they don’t believe me – they tell me it’s not possible, even when I demonstrate it and they see it with their own eyes.

I was told by someone close to me – a man – that I probably wasn’t doing something right. I wasn’t advocating enough. I wasn’t demanding enough. I wasn’t yelling enough. I wasn’t stoic enough. I was probably too emotional, or not enough, or not the right combo. I was just the wrong kind of patient and it was hurting my case.

By the time you get to 57 doctors in 6.5 years, you learn a lot of tactics: cajoling, crying, stoicism, joking, demanding, taking binders of info (so they can’t claim that they don’t have enough of your info at hand to continue).

My conclusion is that I just don’t have a penis. I wouldn’t be doubted. I wouldn’t be treated as if I’m being over-dramatic or like I can’t handle four-syllable words.

I always invite someone who has told me that I’m not doing enough to come with me. Of course that person suddenly becomes too busy to join me…but not too busy to dispense advice from his armchair.

How Much Do I Owe The Swear Jar This Time?

A couple of weeks ago I got the last of my fillings repaired as part of the bigger, year-long, multiple visits to the dentist that were caused by me clamping my jaw in my sleep because of the pain in my shoulder and abdomen. I also had to make sure that they marked in my chart that I had slit ventricle syndrome and the tumor because they love to tip me waaaaaaaaay back in the chair and it really messes with the pressure in my head.

There was a mixup with my appointment and they got me back much later than my start time, which caused me to have to call my transportation to pick me up later; unfortunately, transportation had to leave me until 2 hours after I was done, which caused the fluid to build up a lot, which means I was hella uncomfortable and my vision was cut down quite a bit. But before that, I had a weird/comical/maddening exchange with the staff in the back.

I require four times the amount of numbing medication because my sodium channels don’t process pain meds correctly. Both of the teeth we worked on were in my upper jaw, so I ended up being numb up to my forehead. When they sat me up after I was patched up, they told me I could walk to Walmart down the road (as if! No way am I giving them my money!). I said no. They said I could then walk somewhere else. I again said no. They asked me why. In the best way I could with a very numb tongue/lips, I said, “I can’t theecuz oth wuth wrong with ny vrane.” The assistant, who was none too bright, said, “WHAT’S WRONG WITH YOUR VEINS??” I said, “No. Ny vrane. Vrane.” And I pointed at my head. The assistant dentist asked what was wrong, and I said, “I can’t do anyfing vat vill nake ny vlood mressure go umph. I cood have a stroke and nigh.” The assistant dentist asked what the doctors were doing to help. I said, “I can’t fine anyvun who vill take ny case. I’n lergic to da shuns. I need to fine stuff I wone vee lergic to.”

Then the dental assistant piped up and said, “Well, I don’t blame the doctors. I’m sure they don’t want to feel bad if it doesn’t work out for you.”

I shot her a look and said, “I cood die wifout helf. Da pressoo keefs goin’ uf in ny head and if I can’t get sunfing in to work, it vill kill nee.”

Without hesitating, she said cheerfully, “Well, I can see both sides.” Like we’re debating whether to have fish or chicken, instead of whether or not it’s better to kick the bucket to spare doctors’ feelings. She stuck with her “too bad for you” attitude.

At the end of December, my case was referred to the top neurosurgeon in the Minneapolis/St. Paul area after it was discovered that my brain had literally collapsed under the pressure, as well as started growing a tumor from the scar tissue that was left in from a previous shunt that is now about the size of a quarter. I know he got the radiology report that listed all of my symptoms. I know he got the impressions from the neurologist because he seemed to answer her question about whether I’m overdraining.

His reply was that my brain was fine and the tumor was no big deal. He also said the shunt isn’t overdraining. Now I’m not allowed to see him either. 

Here’s the deal: I know I’m not overdraining. If I were, I wouldn’t have high opening pressures every time they do a lumbar puncture. The overdraining assumption is strictly my new neurologist’s misunderstanding of slit ventricle syndrome – she’s trying to make my symptoms fit, instead of paying attention to what’s going on. Second, the brain tissue around the shunt and the tumor is turning to jelly. This isn’t normal and it’s a big deal. Third, the tumor is causing measurable cognitive damage. Fourth, and I’ll show you pictures, but my ventricles disappeared, and my brain has literally collapsed.

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I have new insurance that started on February 1st that comes with an advocate and a care coordinator, so I’m waiting for them to contact me, which is the norm. I smell a lot of research in my future for trying to figure out what I can try for the next shunt system, and I’m not looking forward to it, but I also know no one else will do it but me.