handicapped

How Much Do I Owe The Swear Jar This Time?

Posted on by akiwifreund

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.

mymriscreenshots

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.

Can You Repeat That?

Posted on by akiwifreund

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.

Gold, Frankincense, Myrrh, and Brain Damage

Posted on by akiwifreund

Happy Holidays! Froeliche Weihnachten! Happy Hanukkah! Happy Kwanzaa!

What is Santa/Kris Kringle/Krampus/Monito-monita, that crazy, overgrown elf/Viking who has nothing to do with a mythical baby born in a stable bringing you this winter solstice/Christmas/yule?

I already got my gift, but nothing like what the three wise men brought across the desert. At the beginning of November I saw a new neurologist who agreed to give me everything that I seemed to be missing: an upright MRI, a neuro psych test, and keep me on as a patient, as confusing as my case is. Three days after our initial meeting the doctor who administers the neuro psych tests had a cancellation so I didn’t have to wait four months. A neuro psych test is a series of tasks to evaluate my real brain functionality – not just the few words a doctor might ask you to remember a few minutes later, like “pencil,” “dog,” and “purple.” I had to take many different kinds of timed tests, including drawing, making linear connections, making word associations, and answering personality questions. That’s the short version.

I didn’t have any problem with drawing pictures from memory. I was shown simple lines and boxes and then given a blank piece of paper a half hour later and could draw them in sequence perfectly. However, when it came to things like giving a list of words that began with a certain letter in the space of 60 seconds, it was like the bottom of my brain fell out. I could only give four words for the letter “A,” and they were very simple words like “an” and “apple.” There were four letters total, and each letter was a challenge. I can only remember the letter “A” at this point.

There was another exercise where the tester gave me a list of words that included pieces of furniture, animals, and modes of transportation. Every time I repeated the list back, I always tried to give it back in order, I never tried to group everything together in like groups. It never occurred to me. However, if I had full functionality, it probably would have. I also could never remember more than a few words, even though I’m guessing the list was repeated more than 20 times.

They wanted to see how I could do with repeating numbers back, so they started with three numbers, then four, then five. As soon as I got to five, I started struggling. At six, I couldn’t repeat any numbers, not even the last two or three of the group. Again, it was like the bottom of my brain dropped out.

There were many other tests, but in the interest of space and to save some face, I’ll stop there. You get the idea.

A few weeks later when I could meet with the doctor who administered the test, she confirmed what I dreaded hearing but suspected: I have brain damage. Since I’ve never had an evaluation done before there’s nothing to compare it to, but she said she could tell that in some areas my knowledge base and functionality was “superior,” or above the level of a college-educated woman. However, the brain damage affected my memory and speed and speech and brought those areas down to true mental impairment.

A few days ago I went into the office for part II of my follow-up to look at the actual scans of my upright MRI. My MRI did not look good.

normalventricles

Above is a progressive MRI scan of a brain (not mine), moving down from top to bottom. As you move further down, you notice that the part in the middle gets larger and darker; that’s the ventricles. They are the four chambers that are the gold standard for figuring out if there’s a problem with CSF in the brain. This is what normal looks like.

Unfortunately, I don’t have any ventricles left. All of them have collapsed. My brain is pressing on the brain stem and I’m having all kinds of unusual problems, like my legs suddenly jerking if I’m standing and I look down briefly. Of course I have the problems I’ve always had, like the vertigo and the fatigue, and that pesky facial droop and ptosis (pronounced “toe-sis”). My new neurologist insisted that the disappearance of my ventricles must mean that I’m overdraining, but I knew that I must be suffering from Slit Ventricle Syndrome, and it means just the opposite – the pressure is crushing my brain.

UCLA has a pretty good explanation of Slit Ventricle Syndrome. I’m 100% certain that my shunt is “nearly blocked but barely flowing.” I always, always feel like my intracranial pressure is extremely high. It’s exhausting. So for now, it looks like I have Slit Ventricle Syndrome, and I’m not sure if this would have been picked up before this point – at least not two or three years ago, even though the symptoms are the same. I don’t recall that my ventricles have looked this horrific in all of my 20+ prior MRIs.

Also troubling is trouble brewing at the back of my skull. In 2013 I had two cisternoperitoneal shunts placed when my neurosurgeon was trying to find anything, anything, that my body wouldn’t reject. After we removed those and I ended up with a ventriculoperitoneal shunt, he barely got the old one out after a lot of scraping and pulling because of the scar tissue that had built up along the tract. A surgery that should have been an hour and a half turned into five hours and I was left with a huge highway of bruising from my head to my abdomen.

Unfortunately, he thought that it wasn’t detrimental to leave scar tissue in my head, and in fact may help to plug the burr hole where he drilled for surgery so I wouldn’t have any leaks. I knew what it was like to have a CSF leak; 2014 was incredibly painful when I had a leaking shunt for that whole year. The scar tissue has been increasing in diameter and it’s now growing like a tumor. From what I can tell it’s about the size of a quarter, and it’s pressing on the area of the brain that deals with memory and speech. It’s actually a long rope but it’s got a huge bulb, and if I press on the burr hole, it yanks on the area it’s attached to right behind my ear.

In plain English: My brain is being crushed. My shunt isn’t working. I’m growing my own tumor that was started by my scar tissue.

My challenge is that I’m allergic to the shunt materials. Also, now that the scar tissue is turning into a growing tumor, can we take it out without creating a leak, and when we pull it out, will the area it’s damaging have permanent damage or will it heal?

Also, can I fucking qualify for disability now? Everything that I’m reading about Slit Ventricle Syndrome says that it’s a permanent condition – there’s no going back.

Within the next few weeks (because of the holidays messing everything up) I’ll find out when I can get in with the best neurosurgeon in the Minneapolis/St. Paul area. He came highly recommended by other hydrocephalus patients when I attended the hydrocephalus conference including the mother of Olivia, the young woman who had 123 surgeries since birth and who is now aged 20.

I am also in the process of finding an occupational therapist for an evaluation that can be included in my records for my attorney and disability case.

I’m going to share the most personal thing I possibly can and have up to this point, because some of you may doubt how much this has affected me because I have created coping mechanisms. It has taken me two full days to write this post and writing even the simplest words is sometimes a struggle. But the hardest thing for me to do to date was to send out holiday cards. At one point I had to stop writing for about a half hour because I broke down in tears. Hand writing words without the benefit of being able to go back and erase them and rewrite them like I do in the computer almost caused me a panic attack because I could no longer remember how to write even single-syllable words. For the people who did get cards, there was a lot more crossing out and scribbling than I would have liked. Maybe you noticed that I started to write an “E” where there should have been an “L” first. Sometimes I couldn’t even remember how to write my own name correctly – I would skip letters.

I don’t have all of the answers. I still – STILL – don’t know what’s causing the imbalance with the CSF in my brain. I don’t know if taking out the scar tissue/tumor is going to alleviate the memory and speed problems. I don’t know if I’m ever going to be able to tolerate an appliance in my body. I definitely don’t want to hear, “But you look fine!” or “Have you tried _____?”

.

 

Product Review: TMedPharma (3 Products)

Posted on by akiwifreund

People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. 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.

First, I’m going to throw a definition your way that I recently used for another review, and that is “medical food”, which this product falls under and is defined by the FDA:
“The term medical food, as defined in section 5(b) of the Orphan Drug Act (21 U.S.C. 360ee (b) (3)) is ‘a food which is formulated to be consumed or administered enterally [orally] under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.’”

Targeted Medical Pharma, or TMedPharma for short, is producing items that are considered “medical food” that are therapeutic doses of specific ingredients meant to treat certain conditions. I was given three products because I suffer from autoimmune conditions – namely fibromyalgia, but possibly others that are still a mystery – that produce irregular sleep, overall inflammation, and fatigue.

First, I was given Sentra AM; the instructions state to take 2 capsules on an empty stomach. 2016-10-23-06-11-43
This is where I really have to pay attention. I have Hashimoto’s thyroiditis, so I take levothyroxine (brand name is commonly known as Synthroid) on an empty stomach every morning an hour before eating. It is very, VERY important to not take certain supplements or eat certain foods within four hours of taking this medication, so I had to check the label to make sure there wasn’t any vitamins C, calcium, or iron to stop my medication from working. The label states that the Sentra AM doesn’t have added sugar, starch, wheat, yeast, preservatives, or flavor. What it does have is an amino acid combination, ginko biloba, cocoa extract, and hawthorne (as in berry, which I take daily to support my heart and cholesterol issues). Also, I’m sometimes out of it in the morning, so I do this to remind myself of how many to take:
2016-11-20-13-23-29Taking the Sentra AM didn’t have me climbing the walls, but I also wasn’t dragging, so it was a nice change. I took this for the entire three months’ supply that I was given and I never had any adverse reactions, which is great because I’m allergic to so many things. My energy pickup was subtle. I’m not certain that I would purchase additional bottles…but ask me a month from now when we are in the dead of winter and I have zero zip, and I may be singing a different tune.

Theramine is the “medical food” taken twice daily (2 capsules) to reduce inflammation. This one must also be taken on an empty stomach in order to be most effective. Theramine also contains a different amino acid combination, as well as GABA (gamma amino butyric acid), cocoa extract, Griggonia extract, grape seed extract, and cinnamon. Sometimes in products that are anti-inflammatory I experience allergic reactions because they have sneaked in some form of fish oil, but I didn’t see any on the list and no warnings, and I didn’t experience hives or wheezing, so I think I was in the clear. They state that the product does contain milk (in the enzymes, most likely) but does not contain added sugar, starch, wheat, yeast, preservatives, or artificial color.

2016-10-23-06-12-47
I am going to impart some knowledge that I found out from going to a naturopath for years. If you take these products on an empty stomach, you will reap the benefits of anti-inflammation ingredients throughout your body. If you eat when you take these products, at best you will only feel benefits in your digestive tract. Take these one hour before eating or two hours after eating solid foods to make sure that you maximize the benefits.

After three months on Theramine, I have mixed feelings. My pain relief from a reduction of inflammation was subtle, if that is what happened. During these three months I was still dealing with the tears in my left shoulder tendons, which were extremely painful, and could have used the extra support. I also have just as much pain from the inflammation in my abdomen from the allergy to my drainage catheter to my shunt in my brain, and I’d love to have the stabby-stabby pains calm down. Generally, though, I felt less achy.

The third product was Sentra PM, targeted for sleep disorders associated with depression. Oh, did I mention that fibromyalgia patients, and indeed all chronic illness patients, are prone to depression? We are. Fibromyalgia patients fail to get into the sleep that brings on REM, so we rarely reach deep sleep, and we are forever exhausted. It’s a vicious cycle. We’re tired, so we go to bed, but we can’t get deep sleep, so we’re tired, so we go to bed…and often we’re told that our disease isn’t real, or we’re doing something wrong and that’s why we feel physically terrible, or that there’s nothing that will make us feel better. Enter TMedPharma with something to try to assist us in tackling this problem!
2016-10-23-06-14-21
Two capsules of Sentra PM should be taken at bedtime to promote restful sleep. I have a terrible time falling asleep and I haven’t used an actual prescription medication like Ambien for at least 13 years because of the terrible side effects (no, no getting up in the middle of the night and eating a gallon of ice cream or going to the bathroom in my clothes closet), because the morning after I would be a walking zombie, barely able to brush my teeth (sorry, former co-workers).

I’m very cautious when trying something new when it comes to messing with my sleep, so I started this on a Friday night when I knew I wasn’t expected to wake up the next morning for an appointment, and I didn’t feel like I experienced prolonged effects. The active ingredients include choline, GABA, glutamine, histidine, and tryptophan. The pamphlet states that Sentra PM provides the amino acids that are precursors to neurotransmitters that are responsible for initiating sleep. There were nights when I felt pretty tired about 30-45 minutes after taking my dose, but then there were nights when absolutely nothing could help me, and those were the nights right before big appointments and anxiety was getting the best of me. But overall, if I were to make a purchase, Sentra PM would be my first pick.

Targeted Medical Pharma strongly recommends consuming these “medical foods” under the guidance of a physician to make sure you are reaping the most benefits and not experiencing any unwanted side effects. This is something that you should take seriously; it IS possible to take too much of a supplement and cause unintended harm, and of course there is always the risk of being allergic to something.

Please check out their complete line of products on their website: Targeted Medical Pharma

Sleeping Single In A Single Bed

Posted on by akiwifreund

On Monday I finally had my bed delivered. It is an honest-to-goodness hospital bed complete with handrails and a hand control to raise and lower the head and foot areas. I actually got it because I’m in bed so much that I am wearing through my traditional mattresses in a matter of months and I’ve gotten a few bedsores. I was afraid that it was going to be super noisy – both the motor and the mattress itself – but the motor is completely silent and the mattress doesn’t crinkle at all (and maybe it helps that I folded up my foam topper from my queen mattress to add to the cushion of this one).

So of course my friends already suggested that things could get kinky with the handrails and the adjustable bed. Like I didn’t already think that. This shit was made for tying.

I had a few _______ exchanges on OKCupid (you can fill in your own adjectives). The first was from the guy from this post where we didn’t get very far before it got weird.

Him: Long time no hear.
Me: When we were trading messages, you said, “I just need to what hours are better for you.” (I presume you meant to say “I just need to know what hours are better for you.”) I told you that I don’t have a set schedule and that I wouldn’t be logging on the next day. You replied and said, “I’ll have some free time tomorrow, Chelsea.” I repeated myself and said that I wouldn’t be signing in and indicated why so that you would understand I was not simply ignoring you. Then you admonished me for telling you that I wouldn’t be logging in, saying, “You don’t have to alert me when you’re signing on.”

From this short exchange, my takeaway is that you are looking for someone to correct so that you feel intellectually superior. It doesn’t sound appealing to me, but maybe it’s your kink. Be happy, or be right, but you can’t be both.

Him: It was really so people know that I’m not a small-minded misogynist who is afraid of an intelligent woman. Sorry if you felt admonished. I should have been paying closer attention while messaging you.

Me: I wish you luck in finding someone who can capture your attention.

(At this point I blocked him.)

Then I got a message from a screen name that didn’t ring a bell. I saw the email first, and the message said, “Will you ever forgive me?” I logged on to see if I could figure it out. There were two messages. “Will you ever forgive me?” and “I hope I hear back from you…”

I looked at the profile picture. I recognized it as a picture a guy used for a profile and I met him a year ago, but the picture was nothing at all what he looked like. I actually did a reverse image lookup of him before we met but I couldn’t find the picture anywhere else so I still don’t know where he got it from, but it absolutely, positively is not him. He also has a home in France and before we were able to meet up for our date I asked him to take a few pictures from his rooftop, which he did. I did a reverse lookup and didn’t get any “hits,” so again, I had to take him for his word. But after our first date and his very enthusiastic insistence that he wanted to see me again the next day, he completely disappeared. You know, for the next YEAR. And then he comes back with this. No explanation, no apology. So this is how I replied:

Oh, do you mean about using a picture that is not a true representation of you, and then disappearing completely? Nope. You are free, petit cochon. (Note: “petit cochon” is French for “little pig.”)

I didn’t realize it but there has been a message in my inbox for four days now, but OKCupid didn’t send me a notification. It says:

I’m JOHN LOPES im here to date a woman that will make me happy till the end of life you can kindly reach me on my facebook i’d JOHN FILLIP LOPEZ……..or you can add me on my email adress johnfilliplopez23@gmail.com ……….you can also text me on my number …. 3155064755

And then immediately below it is a warning from OKCupid:
Never transfer funds to someone you met on the Internet and keep your conversations safely on OkCupid.

So kids, when you see this message, just know whomever is running this profile is from a foreign country and is running a scam. They like to post photos as military personnel (like this one did) and then quickly shift to a story about how their “work laptop” stopped working and they are in tears because they can’t work and they need money and can’t you send money? They are crying their eyes out, honey baby sweetie. Oh, and I like how this dude can’t decide how to spell his last name – Lopes or Lopez.

There’s a lot of weirdness rolling around right now. I don’t feel like I’m missing out on anything at the moment, so I’m perfectly fine flying solo with my new little ugly bed.

 

To Put Into Words

Posted on by akiwifreund

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.

97% Compatibility But The 3% Was Extra Bad

Posted on by akiwifreund

I was contacted by this guy on OKCupid, and his profile seemed very promising. A few things stuck out: first, he grew up in the bible belt and he is staunchly NON-religious like me; second, he’s able to construct sentences correctly; third, he’s handsome and tall so he can do things like see the top of the fridge without having to dig out a step stool. I was busy for most of the day yesterday so I didn’t log into OKC until it was after midnight. Here is our conversation from last night:

Him: I am very interested in having you proofread my profile. Seriously though, I spend a great deal of time lamenting how very few people have any idea what an apostrophe is for these days. I don’t know whether it was always the case, and Facebook just revealed it, or if this is a new issue.
Me: I think Facebook revealed the issue. I have a friend who was formerly a high school teacher and who is now home schooling her 7-year-old twins. Recently she posted something that said “Morning’s!”. I nearly lost my mind.
Him: I guess so. Most people don’t spend their high school years reading peers’ papers, so don’t notice until later in life.
Me: That sounds correct. I probably would have fallen out of my chair if I would have had to read some of my classmates’ material, or tried to. Do you write, or are you strictly a reader?
Him: I write on and off. I don’t do it regularly enough, but I always take it up again. I’m probably going to make the jump from fiction to nonfiction soon.
Me: I hate to do this so quickly after just starting to chat, but I have to get up fairly early tomorrow, so I need to call it a night. Would you care to try to chat soon?
Him: Of course. I didn’t realize that it was after midnight. Let’s try this earlier next time.
Me: Sounds great! Sleep well.
Him: Dobranac.

This appears to be a pretty sane exchange, correct? It’s reasonable that I didn’t realize how late it was, and that I said, “Hey, let’s try this again; for now I need to go to bed.”

This morning I received a message from him saying:

Him: Good morning. I hope you are having a good day. Yes I would like to chat. I just need to what hours are better for you. Last night, I was merely responding to your messages at the time that they came in.

Tonight I responded and said:

Me: I looked at the clock last night and was surprised by the late hour is all – I thought I would have been tired before then. Sometimes I have to get up early, I don’t always have a set schedule. I hope you have had a good day. Mine ended up being busy up to this minute, surprisingly. Tomorrow I won’t be on at all.
Him: I’ll have some free time tomorrow, Chelsea.
Me: Ah. Well, I have PT, then I have to take care of my young nephews all day until about 11 at night (we’re going to a concert since they’re off from school), so I won’t be signing in.
Him: You don’t have to alert me when you’re signing on.

So that didn’t take long at all for him to fly his freak flag. First he asks me for an idea of when I’ll be on so we can chat, then he tells me he doesn’t want to be “alerted.”

I typed a bunch of smart ass replies to him but in the end didn’t send any of them, because a nagging voice in my head was singing, “If you can’t say anything nice, don’t say anything at all,” so that guy gets radio silence. But if I would have responded, here’s some examples of what I had typed and ready to go:
– I was merely responding to your request to know when I would be logging into OKCupid to chat
– You mentioned you would be on tomorrow and I responded that I wouldn’t be as a normal flow of conversation
– Do people ever get tired of you starting fights with them even when you are in agreement with them?

 

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.