the interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group, regarded as creating overlapping and interdependent systems of discrimination or disadvantage.“through an awareness of intersectionality, we can better acknowledge and ground the differences among us”
The state of Arizona doesn’t believe that I exist. I’m a woman with a bachelor’s degree, but I also have some rare diseases that have disabled me to the point that I am unable to work. I really had worked my ass off until I had my last shunt failure and surgery, when my neurosurgeon threw in the towel and gave up on me. The judge that I sat in front of for six minutes in March of this year noted in my paperwork that I had an exceptional work history. So my monthly pay is above the poverty level, because it’s based on the amount of take-home pay for the past 10-15 years (at the judge’s and state’s discrimination and calculation).
Let me back up a little. I got my official judgement saying I’m disabled. Yay. Then my attorney told me that I might have to wait a number of months to see any money. But on May 24th, I got a call from the federal office saying that my money would be released on May 27th. I asked how it would be paid. They said it would be sent how I asked it to be sent. I asked how that was possible, since I hadn’t specified. They said, oh, it looks like we have info from Arizona. (Instant panic, since I haven’t lived there for 3 years.) I said no, absolutely not, I have all of my info updated for Minnesota, there’s no reason for it to be sent to Arizona. They said too bad, if you want it sent to Minnesota, you have to go to your local Minnesota office.
So I did, on the morning of Friday, May 25th. I was a little worried because it was right before the holiday weekend. Luckily it wasn’t a long wait. But I found out that the money was already sent to Arizona – they didn’t wait until May 27th. It was sent on May 22nd. My former bank in Arizona reopened my account, accepted this rather large amount of money, and just sat on it. They didn’t tell me, and didn’t send the money back. For days. I was able to work it out so they could send the money to my current bank so it wasn’t lost. Anyway…
So, while at the Social Security office making sure they didn’t send anything else to Arizona, I mentioned Medicare. The man helping me said, oh, didn’t you know, you’ve had it since January of this year? Another panic. I knew just from reading some info and talking to others that meant that I had a deadline coming up in just a few days. I had to sign up for a supplemental insurance policy and medication policy or I could lose out on tens of thousands of dollars. And Monday was a holiday. That meant that I had Tuesday, Wednesday and Thursday to make phone calls and sign up.
This is no small task. I take 19 prescription medications, one of which is a weekly injection. The doctor that prescribes that had actually been working on getting an exception because my condition has been worsening. I reached out to the Minnesota SHIP office to talk about supplemental plans and medication plans. We found a supplemental plan that costs hundreds a month but could possibly transfer if I moved out of state. For the meds, I plugged in all of the names and we found out the injectable is not covered. It costs $37,000. Welcome to the world of rare diseases! So I had to call the manufacturer and talk to them about a patient assistance program, which might also allow me to get on a higher dose.
So now back to Arizona. When I talked to their local office that helps seniors find supplemental plans for Medicare, they couldn’t believe that a disabled person under 65 had a disability check that was above poverty level. It isn’t a huge amount, mind you, but it doesn’t meet the standards for poverty. So I can’t qualify for medical assistance as my supplement, which is their only option in Arizona. I also can’t qualify for utilities assistance, transportation assistance or food assistance. The woman on the phone had very little experience but offered to find out more info and call me back. When she did, she told me to buy the policy in Minnesota and take it with me, as there was no hope for me in Arizona.
So Wednesday afternoon, I purchased the supplemental plan for Medicare and verified it could come with me (in writing) if I moved out of state. It’s possible it’s going to become much more expensive, but not nearly as expensive as having nothing.
Thursday I finished sifting through all of the medication plans and tried to pick the best one. It was the least restrictive with the medications that I currently take (most of them wanted to restrict my Singulair, for some reason, of which I need double the normal dose). So I managed to get everything signed up before my June 1st deadline.
However, while all of this is going on, there’s something else that’s been cooking in the month of May.
Actually, this started in March. I had a crown fall off. A bunch of decay was discovered – first on that tooth with the crown, then the tooth next to it, then two teeth above it, then a bunch of cavities all over my mouth and it’s painful to eat or drink. I actually had to file a complaint against my dentist that I was seeing for about 2.5 years because he was physically abusive. When he was examining or treating me, he would pull my mouth roughly – so much so that the last time he left bloody fingerprints all over my exam napkin, and I had a swollen face for five days after. It was only after my massage therapist asked me who had been abusive with me that I filed the complaint.
The complaint was supposed to have been anonymous, according to my insurance. However, they revealed all of my info, and the dentist counter-complained (like I was the asshole, because I was the one sitting in the chair with my mouth open). Then my insurance told me to go to two other dentists, which I did, and then they told me to go to my original dentist, and he refused (DUH), all to get this decay and a root canal taken care of. The two new dentists told me that they wanted me to go fully under and to be in an oral surgeon’s office or hospital because of my anaphylaxis history as well as my inability to numb with Novocaine. They referred me either to the U of MN or to Hennepin County Medical Center (HCMC).
I called the U of MN for five days straight, and got different answers each day. They would say they didn’t do sedation, or didn’t take care of complicated patients like me, or were too booked. In the end, I got nowhere. So I turned my attention to HCMC, which happens to be a trauma 1 hospital. They told me they weren’t taking new patients (a huge lie). Then they told me to get a note from my doctor specifying which medications I’m taking – but that was only after they refused to answer my messages for 3 weeks. They wanted to see if my medical assistance would run out before they had to do anything.
Well, ta da! First day of no medical assistance, June 1st! That means I get absolutely no dental coverage. So even though they have been aware of this issue for a few months and I’ve done everything they told me to do, I got zero help. By the way, it’s likely I’m having the trouble with the decay in my mouth because the abusive dentist put metal back in my mouth even though I told him in writing and verbally many times I’m allergic. I found out after the two other dentists examined me that he put metal-based crowns in my mouth after I paid thousands to remove all the metal in my mouth because of my allergies.
I’ve already talked to my dental office that I used to go to in Chandler, Arizona for 11 years, and they have an in-house plan. For $100 a year I can have my cleanings, checkups and x-rays, and then 20% off of fillings and other stuff. So that’s the route I’m going to have to take. Plus I like them and I know they’re not going to rip me up and make me bleed on purpose.
If there was ever a time that I have felt the impact of being poor and being female and being ignored completely, this is certainly one of those times. I’m sure I’ll have many more opportunities.
I’ve got all of $26.01 in my bank account right now. That’s all that’s left from the past three years, including selling my house and car and wiping out all of my savings to survive while going through the process of filing for disability and getting denied multiple times and finally getting approved.
Right now, in my tiny apartment, I’m going through all of my records and shredding duplicates and old unneeded receipts so I don’t haul anything unnecessary across state lines. It’s a daunting task. My belongings are half packed and I’ve only stopped because I’ve run out of room – I still need to be able to walk through my space. But as I’m going through everything, page by page, I’ve come across all of my applications for assistance and housing.
Two years ago I started applying to different locations around the Minneapolis/St. Paul area. Some were through specific cities; some were through counties. All of my applications were for subsidized housing, meaning I was not applying for free housing at any point, I still expected to pay a portion, so the wait should have been considerably less. When I applied through the City of St. Paul, I was told “three to six months, tops.” That was 14 months ago.
Sometimes I fantasized about what it would be like to be able to have more than $100 for groceries in a month, if I could just get in one of those apartments. I have a small credit card that has gotten a workout.
I contacted local legislators to see if they could lend a hand with housing. After all, I’m disabled, and burning through all of my resources, and not able to live with anyone because of my severe allergies (because everyone has pets). The response I got from my representatives was “Too bad.” I’m small potatoes.
But here’s the deal: About 19 percent of the American population is disabled, with about half of that amount severely disabled (I’m in that half). That really isn’t small potatoes. That statistic doesn’t say that disabled means old, or with cancer, or any other stereotype. So what happens if you ignore 1/5 of the population? And why aren’t we demanding more of our lawmakers when it comes to making and enforcing laws? We can do things like make sure that a certain percentage of new or reclaimed housing is made available to lower income and/or disabled citizens rather than just allowing the most expensive developments to go up. There doesn’t have to be a huge housing bubble; it’s all an illusion, just like the diamond market.
As part of my move to Arizona, where I have a rent-capped apartment waiting for me, I have to write letters to all of these housing authorities to tell them to remove me from their waiting lists. I’m also going to tell one of them not to lie about the wait time, because it certainly doesn’t help with having to plan finances. But I’m also going to write to the Minnesota legislators, including a few who are running for offices different from what they hold now and remind them not to ignore the disabled or the housing crisis.
Please enjoy this song, “Wedding Day,” from Rosie Thomas. You will be startled by her speaking voice and then startled again by her singing voice – two very different sounds!
April 10, 2015, was the last day I commuted home from a paying job. It was the last day I was on a dreaded conference call with a bunch of frustrated staff members. It was a Friday, and only three weeks into a contracting job after being laid off from a place where I had worked for over twelve years. I was already nervous about surviving because work had been interrupted by so many shunt surgeries prior to that time, but April 10th was the final straw.
I remember driving home during rush hour and having the familiar “lights out” sensation cloud my vision. I was only working about 8 miles from home, but since it was rush hour, it would take at least 45 minutes, and the darkness squeezed in almost right after I got behind the wheel. It took all my energy to focus on my lane and not crash into anyone else. I don’t even remember how I made it to the hospital after that, which was another 7 miles in the opposite direction. But I remember having to call my boss the next day to tell him that I would never be coming back in; they wouldn’t hold a short contract position indefinitely.
I wasn’t even sure my neurosurgeon would do surgery #10 in less than 4 years at that point. He had already said after #9 back in November that if I failed again, he was not willing to operate. But he did – sort of. He only did half of the surgery. And of course it failed. And then he sent me away, telling me I had to figure out what was the source of the problem, because he wasn’t going to continue doing something that was going to keep failing. It was all being put on me.
I did figure it out. It took me from 2010 to 2017 and 65 doctors to put all of the pieces together, not to mention the fact that I am one person, not even an entire lab or radiology department. I got zero support from the NIH’s Undiagnosed Diseases Network. The Minnesota Board of Health decided not to discipline 3 doctors (among many) who falsified information to get out of treating me. The Mayo Clinic banned me so I wouldn’t hurt their success statistics and change their #1 in the nation status in 21+ areas.
I lost everything: my car, my house, my ability to earn a livable wage, my confidence, my sense of security and self-worth, friendships, independence, and every last penny of my financial reserves. Thank goodness I already lost my hair over 15 years ago because if I had to go through that right now I’d absolutely lose my shit.
After filing three years ago, I finally had my disability hearing on Wednesday the 28th of March. I didn’t know what to expect. My attorney pulled me into a small conference room prior to the hearing and prepped me, telling me that if the judge asked me questions, to not take longer than 15-20 seconds to answer, and to speak up because he was older and may be hard of hearing. I was also told it may go as long as an hour.
But five minutes, and we were done. Long enough to read my name, and say that it was obvious I was disabled and not making anything up. The letters I asked Dr. Afrin and my current immunologist write for me were key for my case and noted in the judgment. The judge also specifically said that the way I was treated by the majority of the 65 doctors was appalling.
What’s next? I have to wait for Social Security to process the judge’s ruling, and then enter my info for payment, and like the Kool-Aid man, all you’ll see is my silhouette – I’m busting outta here. I gave Minnesota a fair shake for three years, but the fact that so many doctors lied in my medical records and refused to treat me has made my decision an easy one. I’ve decided to head back to Arizona where I will pick up again with 8 of the doctors I previously had; only a few will be switched out, including getting in with a neurologist who specializes in MCAS and Ehlers-Danlos. (Minnesota is a great place to be employed as a nurse, because they are paid relatively well, but it’s a horrible place to be a patient, and I’m far from being the only person who feels this way.)
I want to be clear about what this disability status means for me: 1) It doesn’t change any day-to-day abilities that I have. I still have to lay down and rest for the majority of my day, about 20 hours every day. 2) The actual status of disability is not permanent; I’ll be reviewed and my medical records will be combed through every few years by Social Security to make sure my health and abilities haven’t changed. 3) I still have to take the short bus everywhere, especially now since I’ll be making “too much” to get medical assistance (which is more than $0.00). 4) I still can’t get a motorized scooter – do you really want a half-blind person driving one of those??
My prediction is that this is all going to go down by the end of May, but I’m at the mercy of Social Security.
In 1993 to 1995, I worked at a regional hospital in the admissions area, and we always knew when it was a full moon. On any given day we would have one or two women during regular business hours coming in (not through the ER unless it was after hours) in full labor. When the full moon hit, the number always jumped up to about nine. If we ever forgot or wondered for a second, we checked the calendar and then it would click: oh yeah, the full moon. Every time. Don’t ever doubt that the moon has a big influence on happenings on Earth, and it’s not just tides and births.
I was at a social gathering this Tuesday the 30th of January. There were only six of us, but I only knew two others and three were strangers. One person came from her workplace and was wearing her work uniform and I was familiar with the clinic where she works – it’s quite large, and I used to have the majority of my doctors there. One of the young women sitting next to me piped up and said, “Oh, I used to work there, in ophthalmology!”
I immediately tensed up. “Do you mean you used to work with Dr. X?”
“Yes! I loved working with him, he was so laid back,” she said.
Now I’m no good when it comes to putting out a poker face. I also didn’t feel like playing Minnesota nice either. I said, “He made my life a living hell. He was the first doctor I saw there, and he said that my condition was psychogenic [meaning it is psychosomatic], and all of the doctors after that saw what he wrote so they wrote the same thing in my chart, and now no one will treat me. I actually have scans showing that my brain has collapsed and I’ve had a clogged shunt for almost three years.”
She nodded and said cheerfully, “Well, yeah, he actually writes that it’s psychosomatic or psychogenic in almost everyone’s file. But he’s nice to work for as a boss, he doesn’t get crabby often.”
When I say she was young, I mean early to mid-20’s. She wasn’t affected at all by me telling her that his notes basically ruined my life and chances for getting treated properly. I also haven’t had any money (including and especially disability) coming in for three years. I also wasn’t successful in filing a complaint with the Minnesota Board of Health – they said I didn’t have sufficient evidence. But now I’m wondering if I’m the only one who has complained about what he put in my chart because it was so obviously wrong, and I backed it up with 100+ pages of medical records.
This Dr. X is Harvard-educated, but you know, even Harvard has to have someone who is the shittiest out of the bunch. I’m going to go out on a limb and say he’s the one.
This is also why it’s important to stay diligent about your own care. I realize that anger makes people uncomfortable, but in my case, it’s legitimate.
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
When I returned home from this gathering, I was taking my nighttime meds and catching up with my emails, and I saw one pop up in my inbox. I dreaded opening it. It was from a researcher I had written to a week ago to give her an update on my situation. I had met her in 2016 at the hydrocephalus conference that just happened to be in Minneapolis. I wasn’t sure that I could handle more disappointment, but after delaying it for a bit, I braced myself and checked her reply.
I had explained that I was diagnosed with mast cell activation syndrome, and that my Phoenix neurosurgeon had noted that my dura was extra tough when he started doing surgeries in my head rather than my back, so my theory was that my CSF couldn’t drain properly and that it was probably because of the mast cell degranulation. I already know the shunt failures are because of the mast cell action.
Her reply was very encouraging. She thought that I was absolutely on the right track, and she wants to work me into her research. A lot of it already revolves around inflammation; I consistently have astronomical platelet counts (that have already been checked via a bone marrow biopsy), but she hasn’t studied mast cells and I would be the perfect candidate since I had problems before the shunts and with the shunts.
I tend to be a pragmatic person, which sometimes leads to awkwardness in emotional situations. But I’m more than happy to sacrifice my body at the altar of science if it means that some knowledge is gained and others are helped. I’ve become a broken record in the online MCAS groups because I’ve talked about the CSF and shunt issues so many times, but every time I do, more people step forward and say that they have had some mysterious problems too, even if they are not exactly like mine. For a long time doctors have said that only fat, middle-aged women have pseudotumor cerebri/ideopathic intracranial hypertension, but I’m beginning to suspect that mast cell activation syndrome might be playing a bigger part than they realize because of how many people in the groups have stepped forward.
So after this low low and this high high, the super blue blood moon arrived in the early morning hours Wednesday. The moon has ruled my Earth. I feel a little bit lighter now.
The holidays – the general term given to Thanksgiving, Christmas and New Year’s – are tricky. Part of me wants to put up all of my decorations, but my 360 sq. ft. apartment is tiny compared to my former 2,200 sq. ft. house, and I’m constantly shifting piles because every surface is occupied. I just don’t have the energy to pull lights and ornaments out and make them look decent for 35 days.
And then there’s the whole thing about what to do with me. This year for Thanksgiving, my sister and brother-in-law decided to drive us (including my two little nephews) up to my parents’ house about two hours away, but that meant there wasn’t room in the car for their dogs. We arrived, hurried and ate, then drove back again so the dogs weren’t left alone long. To fit all of us in a vehicle at the same time, they have to rent a van – which they’ve done for funerals. I really hate being a burden.
Right before Christmas I had an appointment with my primary care doctor. I had thought we were good. It seemed like she was supportive and understood that my case was complicated, and she was up to speed on my attempts to get help through neurology and neurosurgery at the U where she works as well as every other healthcare system in Minnesota including the Mayo. She also knew about what happened with the Undiagnosed Diseases Network falsely diagnosing me with myasthenia gravis and telling me to go away. We even commiserated over how hard it is to be a female in the medical field.
So when I approached her at this latest visit to fill out paperwork for my upcoming disability hearing, I was completely floored when she acted surprised and asked, “So, what makes you think you are disabled? When was the last time you worked?” I reminded her that I haven’t worked since the last time my shunt failed, which was April 10, 2015, and that I very obviously had the facial paralysis and severe ptosis. (I even have two videos that my neurosurgeon in Phoenix recorded in April and May of 2015 showing these symptoms, him physically peeling my eyes open, and telling me that he was giving up after the last surgery.) In addition, I have severe vertigo and fatigue and fall constantly.
The doctor asked me why I hadn’t gotten help from neurosurgery. I reminded her again that I had attempted to from every single group in the area that I was allowed to under Medicaid, and had been denied by all, including the Mayo, because my case was too complicated. I also reminded her that the doctors at the U had written in my file that my symptoms were psychosomatic after only seeing me for 20 minutes, despite the fact that the symptoms are always resolved with a new shunt – except we now know I’m allergic to the shunts.
She then looked at my forms that I brought with me and told me they “didn’t look official.” I told her they came from my attorney’s office, not the Social Security office, and quite frankly, I could write them in crayon and they would still have to accept them because they were my testimony. The doctor then said she wasn’t qualified to say anything about my status. I said that wasn’t correct, and she absolutely could speak about my difficulties with daily activities. She told me that only a neurologist could talk about that. I asked her if she knew any neurologists who wouldn’t be jackasses to me; her answer was that it didn’t matter anyway because they wouldn’t be able to assess me prior to the hearing.
The visit ended with me telling her never mind. And yes, I was crying. I just was not prepared for her to be an ass to me. Now I have to worry about finding another primary care doctor. So that leaves me the allergist/immunologist, pain doctor and GI doctor in charge of my care for all of the crazy stuff I have going on with the mast cell disease. It really should be more like seven.
Because of things going on with immediate family members, I was going to be alone on Christmas. I was totally fine with it. It was shaping up to be a bitterly cold day, so I looked forward to being in bed and watching really bad holiday movies. But I got an invite from cousins, and found out the short bus was traveling there on a limited basis that day, so I planned on being there for a few hours.
Unfortunately, I ended up on my feet the whole time there so my heart condition went haywire and the fluid in my brain never drained, so I was miserable. Then the short bus was supposed to pick me up at 3:30 pm; I waited until 4:06 pm and was told that even though I waited at the pickup spot from 3:20 pm until the time I called, the driver marked me as “no show” and took off. The worst part was that they were no longer doing any more driving in that area for the rest of the day. I had to throw a fit with the dispatcher, who was already horrible, and when someone finally came to get me, they tried to charge me again even though they shouldn’t have. The trip home took 3 hours.
I didn’t have to go anywhere between December 26th and January 2nd, so I didn’t. I stayed in bed as much as I could.
I’m not a big believer in resolutions for the new year. However, on December 24th, I did go to two services at my very woo-woo spiritual center, and I feel like my burdens are lighter. I don’t know if it’s because at the stroke of midnight I shed 2017 or what, but I’m leaving all of the floatsam and jetsam back there and only taking with me that which will be helpful. I need that to help me through the next part, which is the hardest yet.
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.
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.
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.)
“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.
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.
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.
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:
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.”
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.
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.
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.