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.
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.
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.
The last couple of weeks of December were a revelation.
I spent 20 years away from my family over the holidays, and I learned very early not to make a big deal out of the days we had off in November and December. When I’ve had serious boyfriends and we’ve lived close to their parents or grandparents, I’ve ended up at their houses, but if not, I’ve stayed at home and cooked whatever I’ve wanted to eat and overloaded on movies. A few times I’ve gone to friends’ houses – and one time that I did that, bringing my most recent ex with me, is a story still told today. My friend’s mom introduced us as, “Hi everybody, this is Chelsea, and this is ______, and they used to be boyfriend and girlfriend, and now they’re not, so I don’t know.” This was about 18 years ago, and when I reminded my friend, she started reminding her mother, and her mother finished the story, so yeah, it’s still fresh in her memory.
This holiday season really felt like a roller coaster. I received the results from the upright MRI. Just a few days after that, I received some medical records from a doctor I had seen one time for 20 minutes in August of 2015 when I was trying to find a primary care doctor who would take me on as a patient. I remember this one visit because the doctor had been so friendly, but I knew she was struggling with understanding the complexity of my conditions, and I had to repeat some information. I carried my previous records with me but she wasn’t interested in looking at them, she just wanted me to tell her again.
I was relieved at the end of the visit because it seemed like she was willing to take on the basic care like ordering my thyroid and cholesterol labs for my Hashimoto’s stuff. But then a week later I received a call stating that I had to find a new primary care doctor because she left the practice – she received notification that she passed an exam for a different field. I was floored. If you’re anticipating leaving, why take on new patients??
But the real kicker is getting her notes from that 20-minute visit now. Because I had to repeat myself, she wrote that I was “bragging” about my surgeries, and that I had Munchausen’s.
It’s really hard to read that in the same week that I received results saying that my brain has literally collapsed and I have tissue growing like a tumor and doing damage to my memory and speech. (Today I couldn’t remember why I called the county regarding picking out a vendor for medical assistance.) I still have a hard time talking about what’s going on, to get the words out. It’s serious. What’s happening is that the pressure in my cranium keeps rising, and it’s going to keep rising until it’s the same pressure as my blood pressure and I have a massive stroke and die. The two methods they have of treating it don’t work for me. First, the medication to reduce the CSF production has been proven not to make any difference for me. It’s been tried multiple times. Second, implanting another shunt isn’t going to work; I’m allergic to them all. I’m now at the point where I clog them and strangle them within days. I simply don’t have options at this point.
I also just got notes from a neurosurgeon from the University of Minnesota that I saw a year ago, from one of the guys I have nicknamed the Three Stooges. He was one of the three doctors who saw my MRI from July 2015 that had the beginnings of the slit ventricle syndrome and a smaller version of the tumor, and observed my fatigue, vertigo, facial droop, unsteady gait, and resolution of some of the symptoms when I tilted my head to move the fluid around. In my file he wrote that I “walk with a cane and can’t perform a tandem walk” but that I’m “fine.” He also stated that if anything changed, they would welcome me back to the neurosurgery department.
Fuck that. He’s not going anywhere near my brain when I’m unconscious. He obviously can’t handle it.
But the one bright light in all of this swamp of shit was that on December 27th, I received a voice mail from a case worker with the State of Minnesota. She simply stated her name and said that she approved my case for disability. As soon as I heard it, I immediately burst into tears. Being approved by the state doesn’t mean that I receive any kind of financial compensation, but it does assist me when I’m applying for housing – I can officially state that I’m disabled – and I also qualify for medical assistance as a disabled person instead of just a person living at or below poverty. It will also help to make my case stronger when it comes time for my hearing with the federal case, which I still don’t have a date for yet. My attorney thinks it’s still “some months” away.
First and foremost, my friend Nicole (Nikki) Seefeldt finally got her lungs on December 2nd after a very long listing. Hers was the very first blog that I followed here on WordPress, and she suffers from not one, but two, rare diseases. Her listing for new lungs was much longer than she anticipated but she did not let that deter her from staying on course with her exercising to make sure that her recovery got off to the best start possible. Please, if you have no medical reason that your tissue or organs would be rejected, sign up to be a donor. All of my friends who have been organ recipients are eternally grateful.
Please check out her blog and progress here: As I Live & Breathe
Second, I was considering traveling to Washington D.C. in February to participate in their Rare Disease Week to learn how to effectively communicate with lawmakers. I applied for a travel grant and was participating in a large conference call where we were going over the details of the week and what would be awarded if we got the nod on our travel scholarships when the woman running the call received a notification that the Senate passed the bill for the 21st Century Cures. A week prior the bill had passed through the House. While we were on the call, she had started crying and then had to explain that it had taken two years to get the bill to pass – and with very little resistance from either major political party. The bill passed in the Senate with only five opposed. She then stated that President Obama indicated that if the House and the Senate passed the bill, he would absolutely sign the bill into law, with no hesitation.
Global Genes has published an article and hosted a podcast with me as a guest in the past. They are also the major partner in the rare disease week in February in D.C. that I may or may not attend – I may not be able to handle the grueling travel and having to be upright. But they have been fantastic about getting the word out about this bill and about keeping all of us connected in the rare disease world.
A lot of rare diseases are diagnosed during childhood, as is what happened with Nikki. However, I have rare diseases that haven’t been recognized until adulthood, and even one that we’re still not sure of. Some children don’t survive to adulthood. All of us have a better chance at a quality life if we have medications and treatments that don’t require a decade of testing before they are approved. There is no reason for us to stop advancing science to find answers. We will never run out of discoveries.
Another chronic illness blogger has been kind enough to let a bunch of us tell our stories on her site, and late last week my most up-to-date info was included. She has indicated that she may discontinue the series if she no longer has parties interested in being part of the project, but there are so many of us out there that I would be surprised if the well ever dried up.
Today was a really big day in my little alien world. I finally got the upright MRI that I’ve been asking for for 6.5 years. In all of the 56 doctors that I’ve seen, it has only been the most recent neurologist who hasn’t fought me on my request and put the order in.
So I got strapped into a chair and a cage was lowered over my head and screwed into place like I was Hannibal Lector. Like I was ready for some football and to call out some huts! I was sandwiched and squished between two huge, white panels, a bar propped between the panels for my hands and then one lower for feet to rest on to make my very own roller coaster ride more comfortable.
A couple of times the tech buzzed in and said, “I’m picking up movement. Try to keep very still.” I had explained to her that I sometimes have trouble with tremors in my neck when we were going over the questionnaire, but maybe she’s heard that line before and doesn’t think it’s important to remember. I breathe with my diaphragm, so at a break between segments, I moved my arms as far away from my torso as far as the sandwich bread slices would allow me – that way there was less of a chance that my smushed arms would move my head when I breathed.
The tech had given me the option of tilting the chair back at 30-45 degrees, but I explained that it would compromise what we are trying to catch on imaging, so I had to stay completely upright. The MRI takes about 40-45 minutes, and to make sure the pressure in my skull was really high, I exercised my arms for about five minutes both before the cab picked me up, and then again when I changed my clothes. All I have to do is mimic the bicycle motion with my arms like what I do in PT and I nearly go completely blind from the pressure in my skull. This is why I can’t exercise. I would probably give myself seizures.
At the end of it when I was extricated from the face trap/sandwich boards, I got up to walk and ended up stumbling around like a cat coming off of anesthesia. I had to have a lot of assistance to walk back to the room where my cane was waiting for me. I might have said, “No, I don’t need a fucking walker.” This scan had better not let me down.
Six days post-election here in the U.S., and it feels like every day is different.
The night of the election I stayed awake until about 11 pm until it was clear that Trump was going to win the electoral votes. I refused to watch TV; I couldn’t bear to listen to voices yelling in disbelief, but rather I listened to my own favorite music and instead refreshed Google and saw everything roll in real time.
On Wednesday morning I woke up with my alarm clock – or rather, I woke up with alarm, saying to myself, “Fuck, Trump is president.” I went through the motions of getting ready for an appointment; as luck would have it, my regularly scheduled counseling appointment just happened to be that morning. Above and beyond my normal anxiety and depression and PTSD, I cried for all of the kids that morning who my friend as a teacher said were scared in her classroom about being targeted by racism and ignorance because of their immigrant status and religious beliefs.
On Wednesday afternoon, I was shocked by a call I received out of the blue. Back in August I wrote a letter to the POTUS regarding the sluggish process of applying for disability and antiquated means of qualifying, when people like me are clearly disabled but can’t qualify because science hasn’t caught up to our diseases. This woman was a staff member of the Obama administration and she had the unfortunate task to call me the day after the shitty election to talk to me about my letter to make sure my immediate needs were being met. I assured her that my hospital bed finally came through (it should be here in a few hours this morning) after trying to get it since January. Then we talked about how my current governor chose to expand medical assistance (“Medicaid”) to everyone at or under a certain income level (which comes out to be around 120% of the poverty level, or $1313/month for a single person without children in my case). In two years when my governor’s term is up and he has indicated that he will not be seeking another term, our new governor has the option of continuing this, or only allowing people with children and/or only allowing people who are federally recognized as disabled (which I cannot get) to continue receiving medical assistance.
So to be clear, I could lose my last line of access to healthcare. I confirmed that with her because I just needed to say it. We both cried on the phone together.
She gave me her phone number and told me to call her in case I had any follow-up questions for her. I will call her this week to see if she has any connections at the NIH to see if I can get anyone to reconsider my case, but I think that’s all that I can ask of her.
There are so many things rolling around about Trump already. I’m not sure I can remember all of them and they change hourly, so please excuse my imperfect recall. First, there are rumors flying about his desire to only spend part of his time in the White House in D.C., and part of his time in his place in Manhattan. It can be argued that not all presidents lived at the White House 100% of the time, but that was probably before there was electricity and running water and the Secret Service and, you know, technology. It’s not like his Manhattan penthouse has a bunker in case he starts a nuclear war by being a complete asshole – and let’s get real, it’s not such a far-fetched expectation.
I’m not sure what to think about him actually making it to the swearing in ceremony. Is he truly going to trial for rape and false imprisonment of girls under the age of 18? Are those cases going to suddenly disappear just because some judge is going to feel sorry for a guy who has been elected, just like judges feel sorry for star athletes?
And Jesus H., why isn’t anyone bothered by how many times he has filed bankruptcy? When I worked for Bank of America, we had to pass strict financial checks, and I just worked in the tech area. We couldn’t be hired on if we had bad credit including bankruptcies or foreclosures or judgments. Also, during my years as an escrow assistant, I was especially skeeved out when I had to work with mortgage brokers who had no scruples about giving financial advice to customers when I knew that the brokers themselves were on their own fourth or fifth bankruptcy filing (they told me how they played the Ch. 13 system before the laws were made more strict).
After his first visit with Obama, he walked out telling everyone that he wasn’t going to reverse everything about the Affordable Care Act, specifically the bits about the pre-existing conditions. That means that he has already reversed one thing he promised the ignorant, writhing masses who were convinced that “Obamacare” was responsible for their rising premiums – not the greed of the insurance companies trying to make a profit off of our bodies at the widest margins possible.
So if Trump doesn’t get sworn in, does that mean we’re stuck with Pence? I’m screwed with him too, since I no longer have my uterus, and he thinks that’s all that I’m good for – bearing babies and overpopulating the earth. That’s all he’s concerned about. Read “The Handmaid’s Tale” by Margaret Atwood for reference.
On Thursday I had my very first psych evaluation test, ordered by a neurologist I met on Monday. It took about six hours to go through everything and I was mentally exhausted. It’s one thing to explain to doctors that I lose my words when I’m speaking and writing (you can’t see it, but sometimes it takes me 7-8 tries to write words that used to come easily to me), so this test was supposed to help pinpoint my deficiencies. From what I could tell I had pretty good picture and spatial cognition, but when it came to actual word gymnastics, I had a really hard time. One really painful portion of the testing was coming up with words that began with a particular letter. I think we did four or five letters total, but I only remember two letters – “A” and “S”. With the letter “S” I came up with about 10-12 words in 60 seconds that had multiple syllables, and with the letter “A” I came up with about 5 words and they were 1 to 2 syllables at most. It felt like the bottom of my mind had dropped out. This is actually what happens now on a regular basis and is one of the reasons that before every phone call I make I get a fair amount of anxiety, even if it’s just to make an appointment.
So after I went through all of that (I won’t get results for at least a few weeks), I got my usual cab ride/medical transport. I’ve been taking pictures of the cabbies and asking them questions and posting everything on Instagram. I asked this particular driver what he thought about the election because he was an immigrant and had only been living here in the U.S. for five years. He said he supported Trump because “Obama hadn’t done everything he promised to since he was elected.” I was absolutely floored. This guy was everything Trump (and all of Trump’s supporters) hated. I feel like his safety is at risk and I don’t want him to find out the hard way. I feel like all of us are at risk.
All of us, that is, unless you are a white guy between the age of 18-70 and you’re telling everyone else that they have to adapt to Trump/Pence and that you’ll be “fine” having your rights and/or access to basics taken away from you. Because, you know, ‘Murica.
Please note: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
Three decades ago, my classmates would endlessly remark upon my excellent posture. I was attending a high school for the arts (think “Fame!”) and my art area was theater, but of course like most students there, I dabbled in multiple areas, so I picked up some things from dancing. Even when we sat on the floor of our black box theater in a circle I wouldn’t slouch. I wanted to have a strong back.
Boy, I miss those days. I’m 42 years old now, and I’ve spent the last six years in bed because of a mystery problem with my cerebrospinal fluid that is made worse when I sit upright. Laying in bed has weakened my core muscles and changed the natural curvature of both my cervical (neck) and lumbar (lower back) spine so my spine doesn’t have the “S” shape it should. For the most part I lay flat but I elevate my head slightly so that I can see my keyboard of my laptop, which is propped up on my stomach by a tilted laptop cooler.
For the last twenty years I’ve worked in some capacity in the technical field thanks to a boyfriend getting me interested in computers fairly early in my adulthood. Strangely enough, the posture of the techie and the posture that I find myself in when I am on bed rest are very similar: It’s an annoying “tech neck.” People in the technical field, and in fact, people who are stuck in front of a computer for 8+ hours a day end up in the same pose: shoulders slouched, head thrust forward, neck vertebrae compacted and misaligned.
Now that I’m pointing it out, you might even be shifting around in your seat to correct your posture, or noticing it more in the people around you, like pedestrians crossing the street who won’t even look up from their smart phones. Yep – there’s the “tech neck.”
How about a visual?
Even the slightest tilt of the head forward puts tremendous strain on the neck muscles and bones. Rather than adjusting the screen to a higher elevation, we tend to alter the position of our heads so that we are constantly in a hunched-over position – and we wonder why we have so many headaches!
But now that there’s been years of damage done, sitting up straight isn’t going to cure the numbness and tingling in your arms and fingers, or the stiffness in your neck. Of course, do sit up straight, and do take up your company’s offer to bring in someone who is trained in proper ergonomics for adjustments to your desk, but in the meantime (and for the long run), this product can offer you immediate relief. Sometimes it takes a village, right?
There is a family of products available through the Posture Pump® company for back and neck problems that addresses multiple issues, and the Posture Pump® Dual Disc Hydrator® (Model 1400-D) is going to save my neck.
I already have spondylosis, which is a very technical and general way of saying that I have degeneration of the spine, and stenosis, which is a narrowing of the canal where the spinal cord passes through the vertebrae. I’ve got pain and stiffness, and my arms are tingling and spontaneously going numb because of the degeneration and narrowing happening in my neck.
Here’s a video on the Posture Pump® Dual Disc Hydrator® (Model 1400-D) and you can easily see how it works and how it can help you. Click on the link below.
To summarize, there are two air chambers that work on the neck and upper back area to realign the vertebrae to the natural “S” curve and relieve the pressure from the “tech neck” we have unwittingly positioned ourselves into. Ultimately the neck then benefits by being able to get nutrients and hydration to the discs in the spine, and range of motion improves. And headaches? What headaches? Wouldn’t it be nice to send those packing? You just need to lie on a flat, firm surface, strap yourself into the Posture Pump® Dual Disc Hydrator® (Model 1400-D) , and use the dual hand controls to get relief in just a few minutes’ time.
Here is a direct link to the product page: Posture Pump Dual Disc Hydrator Model 1400-D
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The colder weather is creeping in, and the vines that have clung to the outside of my building and my window in particular have changed to a bright red, signaling shorter daylight hours. The school of thought used to be that the cold stopped the leaves from keeping their green; instead, now we know that it’s the actual length of daylight hours that makes the leaves change from green to gold and red and burgundy.
Now that we are staying inside more, bacteria are just rolling around and proliferating like little Tasmanian devils. The little jerks caught up with me. First I caught the flu, and after five days of that it turned into a double ear infection (the nurse practitioner said both ears were severely affected but neither had perforated, luckily). Three days later I developed bronchitis…because why not?
In the middle of that mess while I was running a fever, I kept my appointment with my GI doctor because he’s very much booked ahead of time and it would take me months to get another appointment. I desperately need my medication for acid reflux because missing it for even a few hours is agony, plus I needed to discuss my new MCAS diagnosis with him so he would understand the importance of keeping me on the medications. He mentioned at my last appointment in February that he wanted to wean me off of the medications because he didn’t want me to develop long-term usage side effects like osteoporosis. Now it looks like I’m just going to have to live with it and be the old lady hunched over the shopping cart.
I had forgotten between February and now how much I like Dr. Chaudhary. I’m even going to use his real name because that’s how much I like him – no need to hide him behind behind a stage name. He is one of the few doctors who has not sent me away and he is not intimidated by the complexity of my body.
Dr. Chaudhary knows my primary care doctor, and so we chatted about her for a moment. Then we talked about my new diagnosis, and I thought ahead of time to bring the paper copy of Dr. Afrin’s notes. I knew Dr. Chaudhary would have access to Dr. Afrin’s notes in the system even though they belong to two different practices, but because Dr. Afrin’s notes are INSANE – and they are – I thought it would be better to bring the paper so he could flip instead of scroll.
Dr. Chaudhary paused and looked at me and said, “Can I be honest with you? I want to be honest with you.” I told him yes, that would be fine. He said, “I don’t think that Dr. Afrin can help you with the problem with the CSF, sweetie.” I immediately started to get teary-eyed, but told him that that was what I was thinking too, it’s just a very emotional conclusion for me, and he said he understood. (Even as I’m writing this, I am crying.) Dr. Chaudhary said that Dr. Afrin will probably get a lot of the other stuff under control if we can get the right combination of medicine going. I obviously know the drill.
Dr. Chaudhary then asked me who my neurosurgeon was. I had to explain to him how I had tried to go through every healthcare system in Minneapolis/St. Paul, as well as the Mayo, as well as petition to be sent to Johns Hopkins and to the Cleveland Clinic, but was turned down every time (the doctor handed me a tissue). I also told him about the three doctors at the U of M who misdiagnosed me and how it affected my request with the NIH Undiagnosed Diseases Network turning me down, and how my primary care doctor didn’t advocate for me. He seemed especially troubled by the last bit because she was his former student and co-worker but he didn’t ask any further questions on that matter. I asked Dr. Chaudhary if he had any connections, but he said that the one person he would send me to went back to India about five years ago, so that was no longer an option.
This whole exchange about my ongoing neurological mystery took about 7 minutes. What makes him a good doctor – hell, a GREAT doctor – is that neurology is NOT his area. Dr. Chaudhary still talked to me as if I knew what I was talking about, and he certainly didn’t offer up lame diagnoses like myasthenia gravis which has nothing to do with me (ahem, University of Minnesota Neurosurgery and Neurologists!). A friend asked what made him a good doctor. To me, a good doctor isn’t one that is just empathetic or sympathetic, because quite frankly, I get that all day long. Dr. Chaudhary is invested. All I can say to that is you know it when you see it.
I got my scripts refilled. As he was leaving, Dr. Chaudhary said, “I will always remember you. You are my patient who is the opposite of the doll – you stand up and your eyes close, and you lay down and your eyes open! Take care, my dear. Do not give up. I know it is hard, but do not give up.”
I wish all of my doctors could be like him.
Not one but two ladies in my circle (Cara from the podcast In Sickness + In Health and Kirsten of Chronic Sex) were able to attend the MedX conference at Stanford in September of this year (2016). Kirsten actually presented to attendees and both Cara and Kirsten have chronic conditions that affected their ability to travel and attend comfortably, but they powered through – because they have unique voices as patients to contribute to the perspective of healthcare. MedX operates under the motto of “Everyone Included” and that each person should be valued, while care should be human-centered.
This is a fairly new conference – only five years old – and is technology-based in the broadest sense, because Stanford is doing something that seems so, well, basic. They are inviting patients to the conversation.
I listened to this podcast by Danny Levine, who you may remember interviewed me way back in January regarding my dating life and how being a rare patient played into that. In this podcast he interviews a patient who attended the conference as an “ePatient,” which we find out probably stands for “empowered patient.” After listening to Cara, Kirsten, and now Emma’s stories, I’m motivated more than ever to apply to be included in their audience as an ePatient. I actively blog (and occasionally hop on podcasts and camera), and I’m certainly not too shy to share my story. I’m not sure if they would allow me to present but I would be open to it. I mean, if I can wear t-shirts inviting strangers to ask me about my weird allergies and failed shunt surgeries, I’m pretty sure I can handle the podium. (And this is where my theater training comes in handy!!)
I think something that a lot of us are grateful for (but many don’t know about) is that the conference offers scholarships for both attendance and for travel, both partial and full. For instance, I am not receiving any income this year because my disability case was denied because I didn’t have a diagnosis and the language my doctors are entering on my records isn’t really describing my situation. So now that I’m pulling money from my 401k to live off of – the absolute barest minimum so that I don’t lose it all to penalties and taxes but have enough to pay rent and student loans – I don’t have money for events like MedX, not just for attending the conference but also for flying there and sleeping in a bed. There’s a chance they could take pity on me for seeing 54 doctors and having 10 shunt surgeries and looking like Quasimodo and I could be in Stanford next year, telling a room full of people my story. So I’m gonna try. But my job as an ePatient is that I have to use my medium (blogging) to document my time there – at least three blogs of certain lengths. That’s absolutely no problem. I’m pretty chatty.
I’m a bit worried that like TV programs going for the cute puppy factor, MedX will want someone on stage who already has a happy ending, who won’t seem to be soliciting assistance for an unsolved mystery. Even with my recent MCAS diagnosis I have no idea if I’m there yet.
I’m also worried about traveling that distance by myself. I’ll lose a great deal of my vision from having to be upright for so many hours, plus I’ll be incredibly uncomfortable because I won’t be able to lay down to relieve the pressure and it’s pretty much guaranteed that I’ll develop tremors, so it would be great if I could have someone with me to act as my eyes and carry items as well as open doors. The national hydrocephalus conference was here in Minneapolis this year, and that was incredibly taxing on me, so I know traveling to California will be much harder. Cara is still suffering because of the nature of her chronic illnesses and unfortunately her body may take months to recover.
Why do we want to do it? Because, as patients, we are involved. Rarely do we enter or leave a doctor’s office without doing a ton of research. This conference is tech-heavy and is attended by doctors and researchers and administrative staff just as much as it is patients, and that is a direct reflection of the world we live in when we seek medical care.
At one point, Kirsten spoke up and suggested that the medical staff speak directly to the patient(s) while a presentation was being streamed to the masses online. A conference does not relieve doctors of certain responsibilities such as treating patients as individuals with valid input.
So I’d love to go and make some connections just as Cara and Kirsten and Emma have, and raise my hand and raise some hell if need be. I can think of a few dozen doctors who really need to attend and gain some perspective.