And Then There Were Three

The holidays – the general term given to Thanksgiving, Christmas and New Year’s – are tricky. Part of me wants to put up all of my decorations, but my 360 sq. ft. apartment is tiny compared to my former 2,200 sq. ft. house, and I’m constantly shifting piles because every surface is occupied. I just don’t have the energy to pull lights and ornaments out and make them look decent for 35 days.

And then there’s the whole thing about what to do with me. This year for Thanksgiving, my sister and brother-in-law decided to drive us (including my two little nephews) up to my parents’ house about two hours away, but that meant there wasn’t room in the car for their dogs. We arrived, hurried and ate, then drove back again so the dogs weren’t left alone long. To fit all of us in a vehicle at the same time, they have to rent a van – which they’ve done for funerals. I really hate being a burden.

Right before Christmas I had an appointment with my primary care doctor. I had thought we were good. It seemed like she was supportive and understood that my case was complicated, and she was up to speed on my attempts to get help through neurology and neurosurgery at the U where she works as well as every other healthcare system in Minnesota including the Mayo. She also knew about what happened with the Undiagnosed Diseases Network falsely diagnosing me with myasthenia gravis and telling me to go away. We even commiserated over how hard it is to be a female in the medical field.

So when I approached her at this latest visit to fill out paperwork for my upcoming disability hearing, I was completely floored when she acted surprised and asked, “So, what makes you think you are disabled? When was the last time you worked?” I reminded her that I haven’t worked since the last time my shunt failed, which was April 10, 2015, and that I very obviously had the facial paralysis and severe ptosis. (I even have two videos that my neurosurgeon in Phoenix recorded in April and May of 2015 showing these symptoms, him physically peeling my eyes open, and telling me that he was giving up after the last surgery.) In addition, I have severe vertigo and fatigue and fall constantly.

The doctor asked me why I hadn’t gotten help from neurosurgery. I reminded her again that I had attempted to from every single group in the area that I was allowed to under Medicaid, and had been denied by all, including the Mayo, because my case was too complicated. I also reminded her that the doctors at the U had written in my file that my symptoms were psychosomatic after only seeing me for 20 minutes, despite the fact that the symptoms are always resolved with a new shunt – except we now know I’m allergic to the shunts.

She then looked at my forms that I brought with me and told me they “didn’t look official.” I told her they came from my attorney’s office, not the Social Security office, and quite frankly, I could write them in crayon and they would still have to accept them because they were my testimony. The doctor then said she wasn’t qualified to say anything about my status. I said that wasn’t correct, and she absolutely could speak about my difficulties with daily activities. She told me that only a neurologist could talk about that. I asked her if she knew any neurologists who wouldn’t be jackasses to me; her answer was that it didn’t matter anyway because they wouldn’t be able to assess me prior to the hearing.

So……..

The visit ended with me telling her never mind. And yes, I was crying. I just was not prepared for her to be an ass to me. Now I have to worry about finding another primary care doctor. So that leaves me the allergist/immunologist, pain doctor and GI doctor in charge of my care for all of the crazy stuff I have going on with the mast cell disease. It really should be more like seven.

Because of things going on with immediate family members, I was going to be alone on Christmas. I was totally fine with it. It was shaping up to be a bitterly cold day, so I looked forward to being in bed and watching really bad holiday movies. But I got an invite from cousins, and found out the short bus was traveling there on a limited basis that day, so I planned on being there for a few hours.

Unfortunately, I ended up on my feet the whole time there so my heart condition went haywire and the fluid in my brain never drained, so I was miserable. Then the short bus was supposed to pick me up at 3:30 pm; I waited until 4:06 pm and was told that even though I waited at the pickup spot from 3:20 pm until the time I called, the driver marked me as “no show” and took off. The worst part was that they were no longer doing any more driving in that area for the rest of the day. I had to throw a fit with the dispatcher, who was already horrible, and when someone finally came to get me, they tried to charge me again even though they shouldn’t have. The trip home took 3 hours. 

I didn’t have to go anywhere between December 26th and January 2nd, so I didn’t. I stayed in bed as much as I could.

I’m not a big believer in resolutions for the new year. However, on December 24th, I did go to two services at my very woo-woo spiritual center, and I feel like my burdens are lighter. I don’t know if it’s because at the stroke of midnight I shed 2017 or what, but I’m leaving all of the floatsam and jetsam back there and only taking with me that which will be helpful. I need that to help me through the next part, which is the hardest yet.

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The Best Little Gift Guide

I used to pride myself on being able to find little things – and big things – that seemed like a perfect fit as gifts. I would look or listen for clues. Okay, maybe sometimes I wouldn’t get it quite right, but at least I would try. My shopping would take place over the course of the entire year and during festivals and trips, because you never know when you will stumble on something unique that screams “_____!” (Use your imagination.)

But times are different. It seems like the majority of the people I know are much more careful about how and where they spend their money because of various constraints or social awareness. I have to be careful too; I no longer have an income, so no extra money to spend during the holidays. This list that I’m going to lay out is for someone – like me – who has little or no income, who might not be able to buy much of anything anymore.

1. Time. This is a big one, and it’s free! I simply can’t get out and socialize like I used to, because my body has put a hard stop on that. Sometimes I don’t want to be by myself. I love it when people visit or call, but I don’t always initiate stuff like that because I don’t want to be a burden. There’s nothing worse than a whiny-ass friend constantly saying “Pay attention to me,” right?

2. Gift cards. Conventional manners/wisdom say that giving gift cards is tacky because then people will know how much you spent on them, yadda yadda yadda. Bullshit. I love gift cards. I especially love them when my entire monthly budget has gone to rent/utility/medications and I have nothing left over to buy groceries, and I have a lovely gift card to the rescue.

3. Wheels. Man, I miss driving. I miss those Saturday mornings when I would get up at 8 am and run around until 11 am and go to about 8 different places and get all of my shit done. Now I ride the short bus and I can only go one place, and it takes me 2-3 hours. And it’s a drag. And I never know who’s going to be with me and if it’s going to be a bat out of hell drive. I would love it if I could have a whole morning of driving around for errands, like dropping off my recycled clothing/rags, recycled toner cartridges, disposing of hazardous waste, petting animals at the humane society, recycling old medications, getting 5 favorites from Trader Joe’s and 6 favorites from Hy-Vee and 4 organics from Aldi. As a side note, disabled people like to recycle too. It’s just that we can’t easily get to these locations and facilities. Plus, me getting out to do these things instead of doing them for me means I get to get out. (As a side note, I have discovered that more than a few people have assumed that the short bus is free. It’s not. It’s actually more expensive than the regular bus. Each round trip for me is nearly $10. It’s really, really expensive when you have no money coming in at all.)

4. Independence. My oldest sister made up a list of modified items that would have made her life easier, like rounded chopping knives that were easier to grip. We were puzzled at the time; it didn’t seem like fun, especially for Christmas. She had debilitating MS and was bedridden because she had lost the use of her legs and some of the finer motor skills of her fingers and hands. Looking back, and living what I am now, I understand that ignoring her list and insisting that we only get her “fun” stuff was a huge mistake. It is not only fun but a huge relief to get everything you ask for and need. So if someone asks for a modified chopping knife, get them the chopping knife.

5. Entertainment. I’m a movie/TV snob. I don’t like most sitcoms because there’s a lot of yelling involved. I also don’t watch cartoons. I know what I like, and I’m a binge watcher! I’m a loyal customer of Netflix, Hulu, and Amazon Plus. Yes, all three. They have some overlap, but there are some things that don’t appear on all three, and Hulu allows me to watch network shows that aired the night before. If you love me or someone like me who is in bed a lot, give the gift of streaming entertainment. I guarantee you it will be used. (Side note: I’ve tried reading. I used to be a voracious reader. Because of brain damage and eye problems, I don’t read much right now. Zero memory and attention span. Squirrel!!)
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6. Amazon. This deserves its own category. I have used Amazon for vitamins, durable medical equipment (that was not covered by my insurance), ingredients to make my own deodorant/antiperspirant, and tons of OTC medication like Benadryl and Pepcid, which I take megadoses of. Of course, I use Amazon Prime too, so I get the movies, and it comes automatically with the music service too. Another great thing is that if you purchase through Smile.Amazon.com and designate a charity to receive 0.5% of your total spent, you can automatically make donations. I don’t have money to donate to any causes, so it still makes me feel as if I’m making a contribution, even if I can’t hand anyone cash. So you will never go wrong with an Amazon gift card.

7. Skin. Disabled people like luxury stuff too. Not everyone wants to smell like an Avon or Dove whorehouse or litter box. A little company called Villainess was just purchased by a new owner and sold out within a few days of its new stock because everyone was so excited to dive back into its soaps, lotions and scrubs. I’m telling you, their stuff is sooooooooo yummy. I just got 3 of their jars of lotions. I’m going to wait to open the jars until I feel really poor because it should be used within 2 months of opening (less preservatives = better for your body) and I want to stretch them out. So keep an eye on them, and put in an order and make someone feel extra special.

Another great place with amazing combinations is Black Phoenix Alchemy Lab. I’ve had some bottles for 2-3 years because I have enough to rotate them around and not smell the same every day. You can buy samples (“Imps Ears“) instead of full bottles, but if you are sure you are going to like all of the flavors that they list, go ahead and buy a whole bottle. I have very rarely been disappointed. Buying scents for other people is a crap shoot, so be very cautious! I’m deathly allergic to lavender and patchouli. Anybody can be allergic to anything. If you aren’t sure, there are always gift certificates.

8. Pain control. I reviewed two different lotions in my blog, and I recommend them both: Mo’s Dream Cream and Invigorate. You can’t go wrong with either of them.

The Oska Pulse is a device that is a financial investment, to be sure, but it has a 30-day money back guarantee, and I use mine every day – because there isn’t a part on my body, somewhere, that isn’t hurting. Sometimes I end up using it six or seven times on that part. I’m just grateful to have it because I always end up feeling better. (It is important to note that it shouldn’t be used around any medical devices that are surgically implanted that could be affected by magnets, like shunts, stimulators or pacemakers. My shunt is strictly all silicone because I’m allergic to nickel.)

9. Massage. I go to a massage therapist once a month. There have been a couple of times where I have second-guessed myself and the wisdom of going, especially when I’ve had to shell out extra for medications and money is getting low, but when I’m on the table and getting worked on, I know I need it. First, it’s hard on my body to be in bed so much. Second, I rarely ever have any physical contact with anyone else. The massage is it.

10. Activism. I can’t do all of the work. Literally, I can’t do all of the work. The best gift you can give people that you don’t even know personally is to tell your elected officials that disabled people need housing, healthcare, transportation and good nutrition. I’m still waiting for housing that I was promised 8 months ago; it would mean that I would have things like grab bars, instead of constantly falling in the shower, and affordable rent, instead of paying full price on zero income (still no disability income after nearly 3 years of filing). Do not buy into this idea that everyone who is disabled should be punished.

Honorable Mention:
Check out The Unchargeables for a variety of chronic/invisible/rare diseases for gear – you can even look for items according to the disease! I checked my alphabetized list and they have a few of mine in there. Pretty impressive! And for each disease, there’s a bunch of items, so you’re not limited to just a t-shirt or bracelet.

Gold, Frankincense, Myrrh, and Brain Damage

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 _____?”

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A Prayer Before Dating

Today, a good friend posted a surprising quote from her Christmas Eve church service: “Lord, touch us where we need to be touched.”

Amen to that!!! I mean, that’s almost exactly, word-for-word, the prayer I say before each date. Well, okay, mine is a little more elaborate: “Lord, please let him have clean teeth, pleasant breath, an unsloppy kiss, magic hands, a great personality and recently bathed bits.”

This holiday is a bit rough. First, I’m no longer in Arizona and gathering with friends to feed ourselves silly and play games like Cards Against Humanity. They are all my “other” family. I have hosted as few as one and as many as ten friends at my house, depending on if they had already been extended an invitation or they had family in the area. I have always made sure they had presents under the tree. I try not to think about this or any aspect of my former life, because it inevitably causes tears.

There is also a gap with our sister passing in July. Her absence also brings tears. This is the first time in about 23 years that I, my other sister and our half-brother are in the same city around Christmastime, and it would have been perfect to have our oldest sister here too. We are still scattering a bit – our brother is heading back to Wisconsin to be with his girlfriend and her family for the holiday. I wonder if we will all ever be in sync; none of us has experience in how to act like siblings as adults living in the same area, and I watch friends who have mastered this skill with envy.

And of course, there is no soul mate under the tree. Santa baby, what the hell???? It’s too soon for me to be able to tell if the person I recently met is a match; we have a few strikes, including my inability to drive, our distance (50 minutes on a good day) and his recent purchase of a puppy (since I’m deathly allergic). He has a good heart, though. Right now we are enjoying each others’ company.

This is a difficult holiday for a lot of my friends who are struggling with illness, loneliness, isolation or job loss. I don’t have any words of wisdom to pass along. All we can do is get through the next week. Maybe what we have wished for this Christmas – a job paying a living wage, gatherings with friends, a loving partner – will show up, but just a little late.

Below is a picture from my house in Phoenix when I had two living rooms and decorated two Christmas trees. Again, tears. God, I loved that house and the life I made in Phoenix. But happy holidays to you, wherever you may be.

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