Did I Ask You?

One of my fellow rare disease/chronic illness warriors/sufferers posted a thread on Twitter tonight. She’s quite well known because her condition is very unusual and obvious, but she doesn’t shy away from the camera or public speaking engagements. Her post tonight detailed an eye doctor visit that was made all the more difficult because 1) The eye doctor googled her condition rather than talking to her directly about it – and she is a much more knowledgeable source than Google; 2) The eye doctor left the light shining in her retina while he took a personal call, after finding out that she is extremely light sensitive because of her condition. 

Her post had to do with the appalling way that she was treated. As each of us who have chronic and rare diseases either have done or would like to do, she had some choice words for the doctors following her as pointers on how NOT to treat rare disease patients. At no point did she ever say, “Gosh, I have no idea what to do. I don’t know who to talk to about this or how to go through the proper channels [in Australia] to file a complaint.” There wouldn’t be any reason for her to do that. She’s lived with this condition all of her life and she is actually a very vocal and active advocate.

But of course, there’s some asshole who decided to announce that she should file a complaint. 

No. Shit. Since the original poster wrapped up the thread by saying that she confronted the doctor and quite forcefully said that the rare disease patient is the best source, and a light sensitive patient shouldn’t be left in front of the light scope while a personal call is taken, and she would be following up with the office, and she just looked forward to trying to relax after being in a lot of pain, I responded. I said, “It’s okay – she knows how to handle bad appointments. She’s had this condition her whole life. She’s an advocate and speaks out often.” In other words, go fuck yourself.

Also recently, a young woman ended up in respiratory failure and was in a medically induced coma and on a respirator. She lost days of her life. When I say young, I mean young. Her significant other has been updating us and has been an absolute rock, but they are both scared and worried and facing big changes. Wouldn’t you know it, in the middle of the updates, I see something about, “Can you guys not offer advice, please?” She’s also a rare disease patient with some of the same stuff I have, but some is different, and I know some asshole is telling her that she needs to do yoga or chew on bark and vitamins from the Himalayas or something. So to whomever is sending her unsolicited advice, fuck you too.

Why does this get me so worked up? I was always a sick kid who grew up to be a sick adult. I became really sick in 2010 and it has been a mystery that has been mine alone to solve; no one has traveled with me to see 65 doctors, or see me through all 10 surgeries. There have been a few people who have helped to fill in some gaps, but they have been sparse. I know what I’m doing. I am educating doctors and nurses and physical therapists as I go along. I teach people how to maneuver through insurance. I help people search for doctors – even when there’s a few thousand miles between us.

I have never said I don’t know what to do, I don’t know who to call, I don’t know where to look, I don’t know where to go, I don’t know what to eat, I don’t know what to take, I don’t know what I like, I don’t know what’s best for me. And though I am currently well below my natural quota of 8 doctors, I know how to care for myself.

The next person who says, “Oh, it must be the acidity” after I tell them I can’t eat pineapple because I’m allergic to it, I’m going to throat punch them. Fuck them too. And fuck anyone who gives me unsolicited advice. I’m so over it and you have been warned. This video is much nicer about it, of course.

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And Then There Were Three

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.

So……..

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.