mast cell activation disease

This is a Test

Posted on by akiwifreund

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.

From This Point. Forward.

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.

The Good Doctor

Posted on by akiwifreund

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.
2016-10-18-14-14-03Now 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.

Medical Sexism and Trump Grabbing My Girl Parts

Posted on by akiwifreund

I pride myself on being a college-educated woman. The education came at a steep price. The student loans will likely haunt me long past my death; I only finished two years ago, and I was even handing in projects while I was in the ICU recovering from my many surgeries.

My education is not strictly located in books, though. I have traveled through 36 states and 7 countries in 20 years, and moved across the U.S. 4 times. As my friend pointed out on Friday night, I seem to be able to talk to people wherever I go (I didn’t realize anyone noticed!). Sometimes I hang back and observe, and there is a lot to be learned by listening and watching body language.

I have never liked Donald Trump. I was never attracted to his slicked-back hair and definitely would not have recognized him if I stumbled across him in the 1980’s or ’90’s when his star was rising, and I couldn’t stomach his show for even one hour when “The Apprentice” started airing. I didn’t understand the appeal of him being put in front of a camera for being extra nasty. I never bought into the idea that it was being played up for entertainment; I actually thought that he was even worse than what we were seeing.

Now here we are and somehow he has slipped past all of the 14 other candidates for president and it’s the last few weeks before the big election. Here in Minnesota we’re allowed to vote early by absentee ballot, so rather than join the crush on voting day, I made arrangements to go to the county office at a time I knew it would be much quieter. It took me about a half hour to fill in all of the boxes manually for all of the different options. We had state representatives and judges that needed votes as well as the president and vice president. Luckily Minnesota is still using paper ballots – so many states tried to go electronic and the glitches resulted in votes disappearing forever, and Republicans winning votes where they might not have.

In case you haven’t guessed yet, I didn’t vote for Trump. I happen to be a few things he hates: a disabled, fat, bald woman who will never compete in beauty pageants or for his attention. But here’s a more comprehensive list of why having him as president would pretty much guarantee that 99% of us would be dead by February 2017 (or there would be a coup, but that would require people getting off of their asses and abandoning their cats).

I attended a school in a very rural area of Minnesota for five grade levels before I moved back to Minneapolis to finish school. Some of those classmates are now friends with me on Facebook – or at least “friends” as Facebook defines us. But we have led very different lives. As much as I have ventured out on my own since the age of 16, the majority of them have stayed very close to home, married very young (some even fellow classmates), had children, and some have already started working on grandchildren, even though our age range is only 41-43. Collectively and in general, they are afraid of anyone who isn’t white and Catholic; Lutheran is marginally okay, even though those fuckers don’t kneel. You’re fucked if you’re Jewish in that area. There’s been a mighty wave of Muslim Somalians of course, and the white folks are scared shitless. Trump seems like a white-orange god because he makes them feel secure – walls! Muslim registry! Deny entry to any more Muslims! All Mexicans are bad (except for tacos)! Um…money! (Shhhh, don’t say anything about the fucking bankruptcies. He was smart for dodging taxes, you’re just jealous because you’re not as smart as he is.) And the creme de la creme: GRAB WOMEN BY THE PUSSY! He sure tells it like it is!

Well, let me tell it like it is.

First, let me drop in a little truth bomb. I had my genes analyzed through 23 & Me just to get the raw data because of all of this rare disease business and to see if they could pick up anything identifiable, and something that came up on my mitochondrial DNA (mom’s DNA) is that I’m Yemeni Jewish. That’s right, fuckers, I’m Jewish. Yemeni Jews happen to be the oldest lineage of Jews, desert dwellers who often converted to Catholicism in order to avoid being put to death, which is likely what happened with our family somewhere along the line – we’ve got bishops and nuns. Jews who converted to Catholicism became self-haters publicly to save their lives. I’m a survivor.

Second, I feel like we are moving backwards in time. Trump is just a very obvious sign of it. Here we are in 2016 and a swimmer gets 3 months in jail for raping an unconscious woman in a back alley because a judge feels sorry for his potential swimming career; young men are deciding that as a reaction to women trying to get equal rights and pay to men, there needs to be a movement called “menenism” where their “grievances” need to be aired (and though it was started as satire, I’ve been personally targeted numerous times on Twitter by guys with the “menenist” agenda – mostly ending with “shut up bitch what have you done nothing,” so of course I’m mentally correcting the punctuation); and now females aren’t going into medicine in equal numbers to men.

When I was debating the Trump vs. Hillary vote with these former classmates and they were telling me why they thought Trump was still “better”, and here was the list that one of the debaters came up with:
Instead, I suggest folks vote based on simple, concrete (non-emotional) things like
1. Who will keep us safer?
2. Who will keep the government out of my health and education choices?
3. Who is LESS LIKELY to be swayed by bureaucracy?
3.5. Who is least likely to fu*k up our economy further?
4. Who hasn’t been linked to several national security leaks?
5. Who hasn’t been linked to voter fraud?
6. Who hasn’t been linked to multiple nefarious deaths to those opposed to or threatening to them?
7. Who HAS BEEN?

This was my response:
Okay, I’ve gotta jump in on this, because I’m a little worried about just where the “facts” are coming from. First of all, we have a pretty solid idea of how Trump is going to treat certain issues.
1. Trump is going to be just as challenged with geography and world events as Palin is.
2. Trump needs to stay away from my vagina and needs a thesaurus because he only knows the word “tremendous” – so do you really think he needs to be in charge of determining how education is either built up or broken down?
3. Trump is easily swayed by anatomy, money, perceived power, hair spray and dementia (his own). 3.5. Are you guys really okay with the number of times he has declared bankruptcy and denied payment to all of his contractors, big and small?
4. He leaks what’s going on through his brain (i.e.: “I don’t pay taxes because I’m ‘smart'”) – pretty sure he shouldn’t be trusted with nuclear bomb codes.
5. He doesn’t have a voter fraud record because he has never had an office that he has been voted into; he has bought all of his offices. And then filed bankruptcy. Multiple times.
6. Multiple nefarious deaths….well, that comes with the territory of being American, doesn’t it? We’re all bullies. We don’t take time to listen or understand or practice any diplomacy.
7. Silly question that is more like a bumper sticker and carries no meaning.

Then one person asked how I felt about “all” of our health care providers supporting Trump?

I’m going to let the “all” slide because I don’t think that’s the case, but I am personally struggling with getting adequate care, and I truly think it’s because we have a boys’ club that is going strong still. Right now the breakdown is about 70% male and 30% female doctors, and I really do feel like my female primary care doctor isn’t confident she can stand up to the male specialists who misdiagnose me. Because she can’t, it really, really fucks me over. It fucks over my case with the undiagnosed diseases with the NIH, and it fucks over my case with disability.

I’ve been struggling with the right way to put this into words, and it’s a little more complicated. I have a deep mistrust for doctors at this point in my life. I expect them to let me down. Last week when I had my appointment to follow up on the testing for the mast cell disease, I barely slept three hours the night before and fully expected to be sent away, just like hundreds of other times. So right now, if I even have the slightest hint that someone worships Trump and his hatred for women besides as sexual vessels, I instantly get anxiety. I can’t trust that doctor to write objective notes in my file and I can’t trust that doctor in my personal space. This is not unfounded.

But the truth is that most doctors won’t talk politics freely. I just have to trust my instincts and  read the doctor’s body language and figure out if he’s an asshole the old-fashioned way.

This Is Going To Sting A Little

Posted on by akiwifreund

My day started early – stupid early. I didn’t mean to, but I only got three hours of sleep because like with all other nights before big appointments, my anxiety skyrockets. My alarm was set to go off at 4:55 a.m. but I woke up at 2:35 a.m. I tossed and turned, and then out of habit my fingers found the spot on my left glute and pressed it and I wondered for the thousandth time if I should have it checked by the dermatologist because melanoma and squamous cell carcinoma run in my family and I never date anyone long enough to remember to ask that person to check the mystery spot on my ass that I can’t see myself. Then I checked Facebook and Twitter and Instagram and all of my email accounts. Then I put on a few terribly cheesy movies from Netflix but couldn’t make it past the first 10 minutes before giving up and searching for another one. Finally I turned off my alarm before it sounded and showered and readied myself for the day, and took my handful of morning medications.

The first appointment was at 7 a.m. with the nurse practitioner working with Dr. Afrin at the University of Minnesota; he is the granddaddy of mast cell activation disease and his patient log is backed up so much that he’s booked out one year in advance, so the NP is helping to do the follow-ups. It was our first meeting and it was after my initial follow-up had been postponed in favor of more testing, so I was already preparing myself for the absolute worst. After all, I have gotten the speech so many times: “I’m sorry, your tests are inconclusive, so I can’t continue seeing you.”

One of the first things the NP said to me was, “I have never seen a histamine level that high before.” We talked about a lot. She gave me about 15 pages from Dr. Afrin to read – and they are prose-heavy, so it’s going to take some time to go through everything. I’m going to have to do a lot of trial and titering up with the medications to see if I can figure out a dosage and frequency that works. He indicated that we are about a decade out from understanding more about the intricacies of MCAD. The bottom line is, I have it. He might be able to make my life more comfortable but there is no cure.

I talked to the NP about my feelings about sending part of my drainage catheter to the research scientist in MI (if she wants it) to see if mast cells are causing problems on the shunt – maybe that’s what’s causing problems for a lot of shunt patients? Also, the NP has no idea if resolving my histamine and inflammation issues with MCAD will actually make it easier for me to have a shunt inside of me. Also, she had no idea if that’s the reason I needed one in the first place. And because I’m still having a lot of issues brought on by the PTSD/anxiety/depression, I did cry in the appointment (like I do now in all appointments), but only once. All of the sudden towards the end of the appointment, the fluid moved down the shunt and both of my eyes spontaneously opened. She got up to get a light and checked my pupil reflexes, and remarked that she had never seen anything like it. I told her that I never had any warning but I knew that I was a magical number between air pressure, humidity and temp; after a few minutes, the shunt clogged and my eyelids drooped again and everything went back to being paralyzed.

After that appointment, I had to come home and meet with the supervisor from the organization that employed the woman who sent me the fire and brimstone craziness. We had to talk about a lot of different issues including trying to find housing for me (since I can’t live with anyone who has animals – my friends and relatives are all breathing big sighs of relief!) and the public housing list wait list is something like 1-3 years (I have no idea what I am going to do between now and then, though there is something I can apply for with the state of MN that is a status of disability that has nothing to do with money but does get me qualified for services and housing). We also talked about getting me help if and when I get shoulder surgery since I won’t be able to do things like haul around laundry.

This was the first time that I met with this person, and she was asking me to fill in some information about why I was having such a hard time with finding neurologists and neurosurgeons. Every time I have to talk about it, I immediately start crying – that’s what clued my therapist in to the fact that I’ve got PTSD – and it’s emotionally draining. I’ve stopped apologizing for getting upset. So I walked her through the Three Stooges at the U of M who completely sabotaged my case with the NIH Undiagnosed Diseases Network as well as Social Security Disability.

I was supposed to go to a social gathering tonight, but I called to cancel because I wouldn’t have gotten home before 10:30-11 p.m., and I have to get up stupid early tomorrow, around 4:45 a.m. again to see the orthopedic surgeon. I’m really fucking tired. I’m so tired that I’ve been sitting here in the same spot for about 4 or 5 hours and I just realized that I put my lounging dress on backwards (it’s got a scoop neck in the front and a deep “V” in the back) and I really can’t be bothered to fix it. Normally I would be a little mortified, but at this very moment, I do not care.

I think about how this is breast cancer awareness month. I think about how everyone understands the gravity of cancer. I think about how five days after one of my surgeries, someone told me I looked fine, and I probably didn’t need help.

I think about how I never knew it was possible to have a disease that couldn’t be diagnosed for this length of time, and that doctors could turn patients away.

I think about how it’s been 6 years and 3 months since I’ve gotten sick, and I may never know what the real culprit is – but it’s funny that my body kicked it into high gear just as MCAD was beginning to be identified. At least I have that label.

Oh, and the doctor put in my notes that I had a “stunningly good memory for the entirety of my history including specific dates for each event” but that my appearance is a “chronically ill-appearing woman who looks a bit older than her stated age….”

Ouch. I always am guessed to be 8-10 years younger, at least to my face.

Please, Sir, May I Have Some More?

Posted on by akiwifreund

My parents’ generation were the product of parents who lived through the Great Depression. My grandparents had to be creative with their resources; the flour companies started making pretty prints on their flour sacks once they figured out that mothers across America were using the sacks to make dresses. Re-purposing so that nothing went to waste, our grandparents were also guilty of turning their yards and barns into trash heaps. They were fearful of throwing anything away in case it would be needed in the future.

My parents’ generation, the baby boomer generation, turned around and said to their kids, “I’m going to give you everything I didn’t have,” which really meant that they wanted their kids to have new stuff. This started a trend of some of my classmates actually having cars being purchased for them, or having college tuition being paid for them, and by middle class – not wealthy – parents. Credit cards also started circulating heavily and regulations became non-existent, making it incredibly easy to rack up debt.

Now my peers are struggling to make ends meet and are in debt up to their ears while still providing cars and tuition and pocket-sized computers to their children as if they are staples, not privileges.

There’s a lot of talk about going back to basics and scaling back, while also teaching our children about how to manage money and understanding the consequences of debt.

I’m in a different kind of quandary, however. I need to figure out how to be poor. I mean really, really poor, in the current system – not what it was, and not what we wish it would be.

Back in 1995 when I took the road trip around the U.S. to pick a new place to live and ran out of money and said, “Okay, Albuquerque!”, I was poor. I landed with $100 and slept on someone’s futon for a month. But I was also able-bodied and picked up two jobs and moved into an apartment within a few weeks. I still had times where I lived off of $10 a week for groceries, but this is a little different. This is finite.

I sat down with the financial planner at my bank and figured out the rest of my bills for this year. However, I’m really stressing about my bed. It’s sagging and I can feel the springs poking through even with a thick foam topper – really bad for my fibromyalgia – and it’s only a year and a half old, and I’ve worn through it because I’m in bed for about 20-22 hours every day. Sleep Number is running a sale right now through September 11th and I could replace this bed for about $1100 including their least expensive base, and that would take care of the springs issue and would probably last 6-10 years. Do I buy it? Or does buying it now put me that much closer to eviction next year? If I’m evicted, what am I going to do with the bed? If I get housing at some point down the line, I’m going to need it again, uncontaminated by mold/dust/dander because of my mast cell disease.

I’ve had alopecia since the age of 3, and I lost my hair completely 14 years ago. There is a 30% off sale going on right now, which would give me a considerable discount on the wig I usually wear. Should I get that instead of a bed (it’s much less expensive)? Should I just give up on wigs now anyway because if I’m evicted next year for non-payment I won’t be able to afford them anyway and I don’t deserve to be so vain?

I have enough in my account to get me through to November of 2017. I’m a worrier by nature. All I can think about is, what am I going to do if I get turned down for disability? I mean, I hope the disability hearing happens by November 2017, because I filed for it in February 2016, and they are running 18-22 months behind (but just in case I have my senator flagging this case as “congressional interest”). Priority housing is given to people who are verified as disabled or who have children; if I am not verified as disabled (because I don’t have a diagnosis) and I don’t have children, I won’t have enough “points” to qualify for housing. All of my friends and family have pets and I’m deathly allergic, so moving in with them is not an option.

I’m concerned about both my mom’s health and my mom and step-dad’s financial stability, and my step-mom’s husband’s health and their financial stability. I’m concerned about my sister’s health and her family’s financial well-being. I’m concerned about my brother’s brand new baby who is due in the next few weeks and his little family’s financial stability. I recognize that they all have grave concerns of their own while they try to shield me from them and simultaneously try to take care of me. Certainly none of them can afford to pay for another adult’s living expenses.

I receive notices from friends telling me that I should support certain causes. I’ve said repeatedly that I don’t have any income and I won’t for at least another year, if at all, but they take “income” to mean working income. They just assume that I receive disability, even though I’ve said repeatedly and clearly that I’ve been turned down for disability numerous times. It wears me out to worry about being homeless, and I’m pretty overwhelmed by all the stuff I have to do to further my own cause since all of the offers of help were not really followed up on except by a select few, and it’s humiliating that I have to repeat myself to be heard.

This weekend I had a former fuck buddy hit me up out of the blue after years of silence to try to give me shit about moving back to my home state, mocking me about my claim that I was done with snow and cold when I moved to Arizona in 2003. I told him that I was pretty fucking sick and had stumped 54 doctors so far and could no longer live without assistance; he said he was working on three hangovers and he was sorry I was sick. He loves to talk about how he’s tired of welfare assholes, and I’m sure he thinks I’m one now too. We can’t even really have a conversation with each other anymore because in his eyes as well as in the view of the government, I have no value.

So where is the class that teaches me to navigate being homeless on the streets in a snow state? Do I get a free map to all of the soup kitchens? Where’s the best place to stash my cart outside while I warm up and surf the net in the library? How do I make a shank?

Pay The Toll To The Troll. The Price? Your Soul.

Posted on by akiwifreund

I don’t have any idea how often this happens, or who determines it, but supposedly, Mercury was in retrograde as of Thursday this week. Why don’t frogs just rain down from the skies and we can all just be done with it? No, the psychic attack is much more stealthy, I think. The back of my neck aches. My gums and mouth burns and everything tastes metallic. I fervently wish that Facebook incorporated a disgusted eye roll emoji in their current six options, up from the original singular thumbs-up option. My inner dialog changes: Get out of my way. Stop kicking my goddamn cane. Your perfume smells like cat piss. I’m not waiting 45 minutes this time before calling in to see if they forgot me again, I’m only waiting 30. I am going to scrub my fucking toilet until it fucking sparkles.

Even before Thursday hit I could feel the earth boiling, and my mood was cooking right along with it. I encountered my first troll on Tuesday night. A friend created a private Facebook group so that (mostly) she and the rest of us could say things that couldn’t be said unfiltered in front of a wider Facebook audience. The creator also uses the page to talk about her new grandchild, so obviously it’s not as restrictive as she originally intended. Anyway, a mutual friend was going through a rough patch with her boyfriend and had already talked about it at a coffee shop reunion the week prior, so when she posted in the group, she was just looking for further confirmation that she wasn’t being too harsh in her judgment; after all, when you are the one in the situation, it’s difficult to be objective. This jackass dude pipes in and starts criticizing her and tells her that she’s probably not communicating correctly or enough with the guy she’s in the relationship with – not at all helpful.

Knowing what I know of my friend, and knowing what I know of the guy she’s dating, I don’t hold back on the troll. First I tell him that she DOES and HAS communicated clearly what her boundaries are and that they have been violated repeatedly. Every point the poster or I bring up, the troll says we’re wrong. Then the troll starts talking about how this always happens to him, that he’s always attacked for having a “different viewpoint from most everyone else.” I told him then that it’s because he’s condescending and he has contradicted everything that the original poster and I have said. He said “No, I haven’t. Tell me where I have. I genuinely want to know.” So instead of turning the post into everything about him, I tell him to go back and read. His reaction is to laugh. Obviously there isn’t anything “genuine” about this jackass. The final straw is when the troll claims that we shouldn’t be “defensive, that he is only being inquisitive.” My response was, “You’re not inquisitive, you’re correcting both ___ and I, so that does not constitute a “different” perspective as if it somehow elevates you, it just makes you repulsive.”

But then the owner of the group starts posting paragraphs about how we’re supposed to play nice. Then there’s more posts about how disappointed she is about our behavior and how she wants to shut the group down…but she doesn’t, because other people chime in that despite the fact that I’m a bad apple, the group is a “good idea” and some people claim it’s so great that she should “go global” with it – as if talking behind backs is a new concept. If that’s the case, I’ve got some oceanfront property in Arizona to sell to them. Lots of sand.

Troll #2 happens the next day, when I talk about this conversation. He listens for a few minutes, then bursts in with, “I HATE MEN!” As if I, Chelsea, hate men. I don’t. I do, however, hate men who: Lie, cheat, steal, are alcoholics/addicts, are abusive, are lazy, are filthy, are racist, are bigots, pollute, smoke, chew, are narcissists, and hate animals. I’m sure there’s more to the list, but that covers it for now. By the way, Troll #2 fits into quite a few of these categories. Hey, does someone smell butt hurt?

Troll #3 is on Thursday, the big retrograde day. I am pulled into a discussion about racism and white privilege. The person who tagged me is Native American, and the other person is white (and just happens to be an editor for Bloomberg and fancies himself to be an expert on the world and all experiences, like all white guys). The Native American wanted the privileged white dude to know that every other white person didn’t share his smugness. What it boils down to is that the white guy claims that no matter what, all people suffer, so racism, sexism and bigotry don’t actually exist, and we should just get over it. The examples I gave him – white men kick my cane when I’m in public, but women and just generally people of color don’t kick my cane; or white men shoulder check me – probably doesn’t happen, or if they do, they happen because people are just being shitty to me and it doesn’t have anything to do with privilege. He told me I needed to be friendlier (as in, “You are a woman, so you owe it to me, a privileged white male, to smile at me”), so I told him he needed to stop being a dick.

I’m not sure what the cure is. I don’t know how long this shit storm Mercury started lasts. Mercury is an asshole.

Dear Mr. President

Posted on by akiwifreund

I figure I have nothing to lose.

It will be a few months until all of my dental work is completed. I am pretty sure that the one tooth that has a “catastrophic” crack is going to be a complete loss, and I’m going to have to spring for an implant (or a partial plate/denture). I’m not allowed to have pain pills – not because I’m not suffering, because clearly I am, but because the FDA and the CDC has decided it’s a good idea to regulate me, rather than try to treat addicts. So I’m stuck eating scrambled eggs and applesauce and rice because I’ve cracked all of my teeth because I’m in pain.
The NIH/Vanderbilt has turned me away with a final diagnosis that is a complete misdiagnosis, so now I’m down to a PCP who will only write me prescriptions for my cholesterol meds. I might have the mast cell disease doctor, I might not. That’s up for debate.

So I wrote a letter to the President.

That’s right. Not that I expect Barry, a single digit midget with only months left in office, to be able to do much about it, but overall, I think those of us who are applying for or who have received disability really get the short end of the stick every time. Here’s what I asked for:

1) Common sense from the people who determine disability. I cannot believe how many times I have heard directly from people who say they have been turned down for disability because they have been paralyzed. One person was a paraplegic and their only way to ambulate was to blow into a straw on their customized wheelchair. THAT PERSON WAS TURNED DOWN FOR DISABILITY. Unless the SSA can prove that the vast majority of the U.S. population ambulates by blowing into a straw on their customized wheelchairs, I think this person should be considered disabled. Likewise, if I have to lay for 20-22 hours a day to keep the pressure off of my brain, common sense should tell my determiner that I am disabled, unless the majority of the U.S. population travels to work on a bed. THEY DON’T. Yet here I am, being told that there’s no way anything is wrong with me. By the way, it’s not just my physical limitations that determine my disability (silly me for thinking that); it’s my age and education too, and since I’m college-educated, there’s a higher chance of me finding some job to support myself – more so than someone with just a high school education, even if it’s a physical labor job that requires only a high school diploma. One guy was told that he can fold napkins, so he was denied disability. If anyone knows of a job where the only duty is to fold napkins and you can pay all your bills and eat too, hey, let me know, I will fold the shit out of those napkins…from my bed.

2. The time to process a disability case is appalling. I was told it “wasn’t unreasonable” to have to wait two years to be assigned a hearing to determine disability. If I can’t work and I don’t have any source of money coming in to pay for basic needs like rent and groceries, how is this reasonable? Not everyone has relatives that they can live with.

3. Accountability. I told President Obama that it’s incredible to me that I have to resort to writing to him or to daytime talk shows or to local TV stations with the hope that someone will find my story interesting enough to want to “rescue” me. But what about the thousands of people like me who don’t get that chance? Why should only one person win the lottery? Why are only some people worth the money and effort?

In closing, I acknowledged that my letter could be completely pointless if Trump is the President Elect. We all know how he hates disabled people…and people of color…and women…and poor people…and foreign people except for his wives (that he later cheated on)…

Amateur Hour: How Vanderbilt/NIH Undiagnosed Diseases Network Failed Me

Posted on by akiwifreund

Earlier this year, I worked for four hours sorting and copying approximately 350 pages of medical records to send to Vanderbilt University in Tennessee when the coordinator for the NIH Undiagnosed Diseases Network notified me that my case was being sent there for review. I divided everything by year and specialty. I inserted notes and highlighted everything that should be of special interest.

I took it as a bad sign when I received an email that was poorly written, and rightly so:
“I need you help with some missing records the UDN has requested on you. We are missing the records from the Movement Disorder Neurologist and  also labs associated with Thyroiditis Workup are not complete. Please request these records be faxed directly to us at *********** or **********. We cannot move forward with reviewing your case until we have these records. Please feel free to contact us if you have any questions.” They weren’t actually missing the records from the movement disorders neurologist; the EMG results were included in what I forwarded to them. (Special note: capitalizing random words is an elementary mistake in and of itself and certainly doesn’t belong in official correspondence.) I wrote back and asked what needed to be obtained for the thyroid workup because I was going in for an appointment in the near future and could have tests ordered. However, I didn’t hear a response for weeks. Their suggestion to contact them with questions was not sincere because they didn’t respond to repeated calls or emails for three weeks total. I went to my appointment and guessed what they would want ordered, then forwarded them the results.

It didn’t matter, though. Last Thursday July 14th I received a letter in the mail from the head of the team saying that after a “stringent” review of my case, they were turning me down. They decided that because I have a strong history of autoimmune diseases that I must consider myasthenia gravis.

Here’s the problem, though: I considered myasthenia gravis already back in 2010, and again this year, and it has been ruled out by tests including the painful tasing of my face in April. All of those notes and tests were included in my paperwork. The 53 doctors who have seen me so far have positively said that I don’t have that. I also say I don’t have that. I have not found any documented cases where patients have received a working brain shunt to move CSF to relieve the symptoms of MG. I have hundreds of pages documenting my numerous symptoms and surgeries, and instead the Vanderbilt team chose to tell me to go back to the U of MN doctors (who, by the way, told me to go away and not come back) to get treatment for MG because “they would know how to treat me.” I am not allowed to appeal this decision or have any other team look at my file. The UDN door is forever closed to me now.

The next two paragraphs I’d like to address to that team directly:

Fuck you, Vanderbilt, you backwoods amateur cocksuckers.

This is what I don’t have: myasthenia gravis, lupus, MS, normal pressure hydrocephalus, communicating hydrocephalus, Creutzfeld-Jakob, IgG4 proliferation, scleroderma, pseudotumor cerebri, diabetes, secondary tremors, tumor, chiari malformation, or rheumatoid arthritis, among other things. After seeing so many doctors and going through hell and having to research A LOT on my own, Vanderbilt, your suggestion makes me think that my file landed in the hands of a beginner’s group. I’m way ahead of you, by years, and I didn’t even finish my medical degree. Every single one of you needs to go back to studying onion skin cells under your 10x microscopes because you obviously can’t handle the hard stuff.

As I feared, Vanderbilt chose to give much weight to the three doctors in the circle jerk at the U of MN claiming I had some sort of “facial weakness” that would imply MG and completely ignores the issue with the cerebral spinal fluid, which in turn ignores the vertigo, fatigue, slurred speech, numbness, and cognitive problems. It would also imply that I implanted a shunt for the fun of it – because I want something that I’m allergic to that causes a shit ton of pain in my body. It also means that they completely ignored the notes that indicated that my symptoms subsided when I had working shunts. Now I am back to the starting point, meaning no one knows what I have or how to help me. (Please note: I am still going through testing for the mast cell activation syndrome and I am watching the results slowly trickle in; my guess is that I’m going to have to repeat everything because nothing is extraordinary in the outcomes at this point.)

I also still don’t have disability money coming in. My hearing won’t be set until about a year from now, but my chances are only about 10% in my favor at the moment because I still can’t get a diagnosis or the NIH to work with me. I’m not being dramatic, I’m being realistic. My attorney would tell everyone the same thing.

If you have read this post in its entirety, thank you. I’m not asking for advice; that’s not how I operate. This is just one of those times where the Carousel of Crap feels extra shitty.

The Princess and the Pee

Posted on by akiwifreund

There were three things rolling around in my “Personal Belongings” plastic drawstring bag – one “hat” that is used to measure output, and two tall brown jugs with screw-on lids and my name on them. It was time to collect my pee.

The jugs were about 4.5 inches wide and 4.5 inches deep but a whopping 12 inches tall, which meant that in order to fit in my half sized refrigerator, a shelf had to come out. I made sure that I set everything up on an empty bladder so I didn’t have to scramble to do it later. I rearranged my fridge and put the jugs on the top shelf so that they would already be cold, ready for the first deposit. I very loosely screwed the caps on. I got the box of green latex gloves out of my medical supplies and sat them next to the toilet; I was not going to be transporting the collected goodies with my bare hands. I put the “hat” under the seat.

Luckily The Saint Paul had a good sense of humor about the whole situation too. He was on cooler duty for me; I sent him a picture of the one I thought would fit the jugs and he picked it up on the way to my apartment after work. However, when we tried to fit the jugs, they were just about 3/4″ too big, so I had to send him back out for a bigger cooler (that I could still carry by myself while also using a cane). I thought I would only have room in my freezer for a 5-pound bag of ice and so that is what he came back with for me.

Bright and early the next morning I started drinking water.

As luck would have it, I had plans to see someone that evening whom I hadn’t seen in at least 13 years who just happened to be in the city because of a work obligation. When you get an opportunity, you do everything you can to take advantage of it! This friend was going to be only blocks from my now deceased dad’s and uncle’s hair salon (still owned by their good friend), so I thought, “Hell, I’m going to get some wigs cut too.” I managed to get a short bus for 3:45 pm to take me to the salon, and to pick me up and take me home at 10 pm, so that meant that I could only pee from 7 am to 3:40 pm, and about 10:30 pm to 6:45 the next morning. It’s a good thing I’m a planner. It’s also a good thing I have the bladder of steel. I told my friend I’d see her at a certain time and that I couldn’t pee while we were out (without offering an explanation).

I did pretty well. I took in about 80 ounces of water between 7 am and 2 pm, and managed to get a bunch of samples before my bus rolled up at 3:45. However, I did hit a few snags. First, the “hat” didn’t sit well under the seat – I almost completely lost the biggest collection and I had to jump up midstream and pull half of the container up from out of the toilet. It wasn’t dunked in the toilet water but I did manage to get both hands wet, and was so grossed out that I had to do a surgeon’s scrub before I could finish peeing, but I had to do it really quickly because I hadn’t been able to wipe my booty so I had to kind of stand bow-legged and squat like a cowgirl who had been riding the trail for days so my legs didn’t also get drenched (thank goodness for the bidet). Second, the “hat” didn’t have a very big pour spout, so when I went to the fridge to transfer my drop to the jug, I had to pour very, very slowly. I had a lot of time to contemplate my urine. I remember thinking, “Man, that smells really fruity. Why does it smell really fruity? I’m not even borderline diabetic.”

Another thought: “There are some FetLife men who would mourn the loss of this tasty liquid.” Another thought: “Replace ‘tasty’ with ‘nasty.'”

I managed to not use the bathroom once between 3:45 pm and 10:30 pm, so no samples were sacrificed in the name of reconnecting with old friends. Everything went into those jugs.

I only ended up filling up one of the jugs with my samples, and my special instructions were to bring the sample packed in a bag of ice packed in a container of ice to the hospital. However, since this cooler was much, much bigger than the one that was only slightly too small, I had to improvise when I realized the ice only reached the bottom 2 inches of the cooler when it spread out. I knew I only had minutes before the cab showed up to transport me to the hospital, so I started grabbing the nearest things – throw pillows from my couch to fill the large spaces. I stuffed those around the pee jug in a bag, then poured the ice in. There was still space not covered in ice. What to do? I had an old bag of nearly petrified cut rhubarb in the freezer that I thought was going to be used for custard bars (seriously, make these rhubarb custard bars), so that was thrown on top. Perfect.

I got to the M Health building at the U of MN hobbling with my cane in my right hand and this cooler big enough to fit a small man on my left (bad) shoulder and slowly made my way to the lab. When I got to the front desk, I notified the clerk that I had a temperature-sensitive sample, so she asked me to follow her to the back area with the phlebotomists so they could accept it and log it. The woman who ultimately took it was flustered and momentarily angry when she saw my throw pillows – she assumed that I had forgotten the ice part. I grabbed the rhubarb off of the top and threw it in the trash and she took the cooler to the back to pass it along to the technicians.

While I was waiting for my cooler to reappear, the clerk and I realized that another cooler that was sitting there was leaking water all over the floor. She opened it and it contained another pee jug. I was surprised to see it laying sideways completely submerged in water – I guess they had complete confidence that the screw top was a tight seal and there would be no transference either in or out? Either way, the clerk and I started working on mopping the floor up with paper towels. Of course, I did another surgeon’s scrub at the sink immediately afterward. If I’m not okay with getting my pee all over my hands, I’m not crazy about Stranger Danger’s either.

There is a distinct possibility that I will have to repeat this test a few more times. If so, I will be more prepared – more ice, less rhubarb!

You Know, Like The Nasal Spray

Posted on by akiwifreund

Tonight was supposed to be a date night with the boyfriend. Unfortunately, I’ve been nursing a headache all day that has been getting progressively worse, so we’re postponing until tomorrow night and I have vowed to not make myself ready for public consumption tonight even a tiny bit. Instead I’m listening to Enigma and thinking about how to put all of this week’s news together.

When I was little, I had a lot of problems with asthma and allergies. There was one time I had gone hog wild with the Cracker Jack tattoos and then went into anaphylactic shock shortly after from who knows what and was rushed to some kind of urgent care (though back in the 1970’s it wasn’t called that), and my mom and I remember that the doctors and nurses were momentarily amused to discover how enthusiastically I had stamped them onto my arms and legs when they hurriedly stripped me down to shoot me up with multiple adrenaline shots. I always had allergic reactions that seemed to come out of nowhere. I would have hives show up on my little cheeks that couldn’t be explained. We tried so many things, including eliminating dryer sheets and perfumed laundry soap. I could only bathe with certain soaps – I remember being disappointed that my friends had fun soaps with glitter, while mine tended to have real oatmeal and vaguely resembled excrement.

Often my allergies would turn into full-blown infections. My little body was so worn out from the allergic reactions that the microbes had an easy time of taking over, every time. I know now that specifically I am even more vulnerable because I have both IgG3 and IgG4 immunodeficiencies, so I cannot fight off infections like other people can, and my infections will always last longer.

One of the many things I always struggled with is cigarette smoke. I knew from a very young age that I was allergic to it; it wasn’t just that I didn’t care for the smell, but that it made my throat close up, like I was having an allergic reaction to it, much like what people experience when they are very allergic to cats (a more common allergy than dogs), or when they have a peanut or egg allergy. After being exposed for a few hours to cigarette smoke, it’s inevitable that I will develop an infection. Three of my four parents were smokers and so I always had sinus infections, bronchitis, ear infections and pneumonia growing up. Nowadays I’m thankful that most places in the U.S. have adopted laws banning smoking in indoor public places.

Animals are tough too. We had a cat that I loved very much but we ended up having to re-home her with our aunt after it was confirmed just how allergic I was to her; our dogs were outside dogs at my mom and step-dad’s house, but my dad and step-mom had an indoor dog. It seemed like I always had a sinus infection and/or bronchitis and/or an ear infection.
There are other allergies that I have noticed over the years that are not the usual suspects for most people. For instance, I get hives all along the entire surface of my body that has been in contact with brand new furniture. I’m not sure if it is the dye in the fabric or the chemicals in the padding that I’m allergic to, but it’s miserable. Also, commercial perfumes that the general public wears and Lysol are incredibly toxic to me. (When I used to work in the cubicle farm at Bank of America in Phoenix, I used to stand up and yell “Stop spraying!” if a co-worker started spraying Lysol in his or her cube because my throat would immediately start closing up. Everyone thought I was nuts.)

Lately I’ve been having some trouble with my pulse being about twice the normal rate and with my blood pressure being elevated. I also have burning and a metallic taste in my mouth, constant heartburn that no one to date has been able to pinpoint the source of, and of course the constant problems with my CSF, memory, word recall and crushing fatigue.

Back in October of 2015 at the urging of a friend, I made an appointment with Dr. Lawrence Afrin, who is fairly new to the University of Minnesota staff; he used to live in South Carolina and transitioned to Minnesota starting in 2013. When I moved here a year ago, I was trudging back and forth between appointments with doctors and labs and scans, and didn’t think much about what he had to offer me, quite honestly – I mean, I thought that what I had going on was better addressed in the areas I had already been concentrating on: neurosurgery, neurology, immunology, rheumatology. I couldn’t even find a regular primary care doctor who could handle me. I made the appointment anyway, but Dr. Afrin is in high demand, and they booked me for ten months later. I didn’t give him a second thought.

A month ago I received a call from his office with the offer to move my appointment to the end of June. I accepted. In the meantime, the same friend who urged me to make the appointment also bought me his book and sent it to me, so I quickly started reading it because of the pending appointment – “Never Bet Against Occam.” Within the first 20 pages I realized that I was reading about my own puzzling history. I started to assemble my list of questions and completed my 3-ring binder for the appointment.

Dr. Afrin is considered the national expert on a newly identified disease called Mast Cell Activation Disease (or Syndrome) or MCAD (or MCAS). It has only begun to be identified in the past 8 years, and he has been at the forefront of the movement to get it nailed down and classified. Everyone has mast cells. Everyone with this condition has a “normal” amount of cells, but they act in a very abnormal way. For some people, maybe it’s normal for them to have an allergic reaction to a mosquito bite. However, if they go into anaphylactic shock from the mosquito bite, then that might be considered MCAD if the actual number of mast cells didn’t increase.

Dr. Afrin first read through my records. Occasionally he quietly chuckled to himself as he read. At one point I asked him what was funny; he said that the signs I had MCAD were quite obvious. I told him to wait until he got to the part where I demanded to get azathioprine to try to stop rejecting the shunt, because I came up with that on my own, no one suggested it to me (I found out from his book that he prescribes chemo drugs such as azathioprine to MCAD patients in an attempt to try to find the right treatment).

In another section, he stopped and said, “Oh, Dr. T. here said that you have a mast cell disorder.” I said, “He read that I was coming to see you in the future. Let’s just ignore everything he said because he misdiagnosed me, shall we?” He laughed, but then later said I shouldn’t be so hard on my doctors in general because their main goal is quantity, not quality. I didn’t tell Dr. Afrin that he was my 53rd doctor at that point. I also didn’t want to go into an impassioned speech about how difficult it has been to lose my ability to work, to lose my house and car, my independence, and my sense of self-worth, all because doctors thought my case was too difficult and they just wanted easy cases.

Dr. Afrin thanked me for putting together such a complete medical history of the last six years. We talked about my life from birth to present and what were probably the signs of MCAD from the very beginning.

Here’s the plan: He’s going to request the biopsy samples from my upper GI (that I insisted on getting done on my own because I’ve been trying to figure out where this horrible acid reflux is coming from) so that they can be stained with the special stains that can show the concentrations of the mast cells. I’m going to have a bunch of blood work done next week. I’m also going to be sent home with a collection container that is going to live in my fridge for 24 hours. Can you guess what it’s for? Not Kool-Aid! Urine that I have to collect for 24 hours worth of peeing. That’s right. Then I have to transport that back to the lab, but first I have to pack it in a zip lock bag, pack it in ice, and then put it in a cooler. The urine has to stay cold or the components that have to be tested begin to degrade and become useless.

My sister and I had some good laughs over the whole refrigerated urine thing. First of all, I’m a bit of a germaphobe – partly because of the time I spent in nursing school and specifically in microbiology and all of that in-depth studying of bacteria, and partly because I know my immune system is weak. Second, I’m going to have to carry the cooler in my left hand because I have to walk with my cane in my right hand. Right now my left shoulder is in really bad shape because the tendons are likely frayed. What if I drop the cooler of urine? Am I destined for YouTube infamy when the bucket-o-urine splashes me in the face?

I’m thankful for this person steering me to Dr. Afrin. I’m trying not to get too excited because even though he’s 99% certain that I have MCAD, I’ve been down the 99% certain road before a few times, and it’s very emotionally draining to get misdiagnosed.