CSF

Would You Like Some Abject Poverty With That?

Posted on by akiwifreund

I left a message yesterday with my apartment manager regarding my lease, which is ending on May 31st. I had signed a notice and turned it in on March 17th indicating that I wished to stay another year when my lease expired, but I haven’t heard anything since then, and we don’t have many days left until the end of this month. I have a certain amount of money in my bank account from the sale of my car that I have been using for living expenses but I figured that if I was going to sign another lease, the apartment manager wanted to see proof of income or a certain amount of reserves in the bank, so I decided to call the administrators of my 401k to pull all of the funds and close it out.

The simple act of getting on the phone causes me anxiety. In all of the jobs I’ve held over the years, I used to field anywhere between 50-100 calls a day, so just know that that’s highly unusual for me to dread picking up the phone and try to figure out what to say without fumbling.

It’s also unusual for me to not have one or two or three jobs simultaneously. The 401k is my last lifeline and the only thing standing between me and homelessness. Right now I have to operate under the assumption that I will never have any money coming in ever again because I have no idea what the outcome of my disability hearing will be in 2017.

The call to the 401k plan administrators only took a few minutes. The first representative couldn’t confirm or deny which penalties I would be subject to, even though my CPA said that I could probably avoid a 25% and 10% early withdrawal penalties because of my indefinite disability status. A second rep – presumably the guy who did the calculations and released the funds – advised me that he had to take out a minimum of 20% for taxes and that I should set aside an additional 10% for penalties, all in a blaring and bored voice, as if he heard this stuff all the time, as if it wasn’t a big deal for me to have no other choice.
I have a few big purchases coming up. First, I have to take care of a crown and root canal completely out of pocket because medical assistance won’t pay for any of it. Second, I need a new bed; this one started to sag about five months after I purchased it last year because I spent so much time in it, but the store wouldn’t cover it under warranty because I moved out of state and the manufacturer would only cover a small percentage (this time around I’m going for the bargain Sleep Number C2 – no inner springs and it costs the same as a traditional inner spring bed). Third, I want to buy a different a/c window unit because the one that was provided with the apartment is gross and inefficient.

After those purchases, I will have to live off of the same amount of money slightly more than what workers make at minimum wage in the U.S. I don’t know how people do it. I don’t know how I’m going to do it. It’s not like I can go out and get more jobs, or a better job.

This is the song of our people. Poverty. Desperation as our bodies shut down, especially in my case (and others out there) when I don’t have a name to attach to it or a prognosis to go by. My counselor has told me not to think a year ahead and allow myself to be swallowed up by the fear of what comes after the money runs out, but how can I not think about that? My life is already so different than it was even just a year ago; I can’t even whisper the words, “How much more can I lose?” That’s like setting up a new dare to the universe.

Hanging up with the Merrill Lynch rep, he wrapped up the call with the requisite, “Is there anything else I can help you with?” The old, working me would have awarded him 10 points for asking the question. The new, disabled me wanted to tell him to suck my ass.

Sleep and Counting Sheep

Posted on by akiwifreund

What are the two most common symptoms of just about any chronic disease under the sun? Pain and fatigue. Sometimes pain interferes with my sleep, leading to even more fatigue. It’s a never-ending cycle. I jumped on the opportunity to try this product from ProHealth called FibroSleep, because let’s face it – even the best bubble baths, candles, teas and essential oils can’t fix everything every time. Specifically, I was given this product as part of a product review opportunity through the Chronic Illness Network. This item was a gift and I have been encouraged to give an honest opinion and review without any influence by the company. If you have read anything else I’ve written, you know I don’t hold back.

One of the problems that I run into with my additional strange, undiagnosed rare disease is that because of the increased pressure in my cranium, I get anxiety. Sometimes it feels like it comes out of nowhere. Sometimes I can blame it on specific events – like doctors who tell me that I am imagining my symptoms, or that my cluster of symptoms are actually unrelated to each other (even though the majority occur in my brain), or that there’s nothing that can be done and to never come back, etc. About every ten days I will have an entire night pass where my anxiety simply rules my entire body and I cannot fall asleep.

I received this product just in time for a particularly bad run of insomnia thanks to some discouraging appointments:
2016-05-05 08.02.56
I always, always check labels to see what’s going to be invading my body, so here’s the ingredients:
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This particular beef has come up for me before with me and labeling, but I would like to point out that if you have a camera on your phone that has a high pixel setting and can adequately blow up a picture so that you can read tiny writing, you may not see this as a problem. However, if you don’t, and you don’t carry a magnifying glass, you will not be able to read this label and figure out the ingredients. I’ve been told before that it’s a space issue – they simply don’t have enough – but here’s some blank space that’s not being used:
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The size of the capsules are pretty standard:
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I tried the capsules for three nights in a row and nearly gave up completely. I have had previous experience with 5-HTP and melatonin (both included in this product) and figured that it would be a slam-dunk, but anxiety that was prompted by doctors with big egos and closed minds completely overruled any compounds I was consuming, so I got zero sleep. I didn’t even get a weird, loopy feeling that I sometimes get with those two ingredients the morning after.

Which brings me to an important point: with both 5-HTP and melatonin, you will give yourself the best chance at getting good sleep if you cut out ALL light because light messes with your REM patterns. Look around your sleeping area and address all sources of light, including your phone, your laptop/tablet, your router/modem and your TV. Okay, so I just named off everything in my sleeping area – because it’s my bedroom and also my living room since I have a studio apartment. Even my sun therapy lamp has a bright red light that glows when I turn off my room light at night that would otherwise mess with my sleep if I didn’t somehow cover it up (I used black electrical tape).

I put FibroSleep in a drawer for a week and a half and resigned myself to terrible nights (and days) while I struggled with the politics of navigating the good ol’ boys’ club of male doctors. When I felt like I had put enough space between them and me, I tried again. Boy, did I sleep – like a rock. I did have some funky dreams because apparently my brain had a lot to work out. Also, each night I took the FibroSleep I dreamed that I was physically going through the motions of going to the bathroom, which I have learned over the years that that is my own personal signal to wake up pronto because my bladder is full and no joke, IT’S TIME TO GO. It conked me out so fast that I forgot to use the facilities before falling asleep. Most of the times I woke up to use the bathroom I also could not fall back asleep, so I only clocked about 4-5 hours of sleep total. On those nights I was loopy. This is definitely not the fault of FibroSleep. I have always had a hard time falling asleep after waking up to do things like running to the bathroom, so I broke the cardinal rule of not interrupting the sleep so that I could reap the benefits fully. I have always envied those people who can easily go right back to where they left off.

I have had fibromyalgia for about 18 years, and sleep is always a big challenge. Even if you don’t have fibromyalgia but you are like about 70% of the adult population at any given time and you are going through an especially extended and rough patch of chronic insomnia, FibroSleep may be worth checking out. Currently (May 2016) they are offering a 20% discount on FibroSleep orders here: https://www.prohealth.com/shop/product.cfm?product__code=PH311FB&B1=BLGGPH311

Also, if you are interested, they are giving you the opportunity to enter in a chance to win on their giveaway: http://fibrosleep-giveaway-bloggers.instapage.com/

Lastly, ProHealth offers a number of products. They actually have done something quite handy with their site and divided it up by conditions and topics, so you can read articles and shop for products specific to your condition: http://www.ProHealth.com

Le Petit Mort

Posted on by akiwifreund

I cried a lot yesterday. I never used to – it was a bragging point for me, that I would shed tears once a year, tops. But yesterday I started by spending an hour on my counselor’s couch recounting my dehumanizing neurologist’s appointment on Tuesday with big, fat tears rolling down my cheeks the entire time. It actually took me days to process what happened in the visit, and is the reason why I still have to write part two now.

I barely got five words out before the tears started. They were angry tears. I’m pissed. It’s not just that the doctor was a dick – because he was – but it’s that his actions could affect my life for the next few years to come. It’s not an exaggeration. I’ve been through this before too. When I had my very first shunt placed and experienced abdominal pains from day one, the neurosurgeon and general surgeon passed me back and forth for a couple of months and blamed each other for causing me pain before finally throwing up their hands and telling me that it was my imagination and there was nothing wrong with me before they had to do a large cut on me two and a half years later and discovered my abdomen was grossly inflamed from an allergic reaction to the shunt. Two and a half years before they admitted there was a problem.

The problem with this neurologist now is that he is saying that I have spasms in my face, and that I just need to stretch my muscles. He’s going to put that on my records too – and the records are going to the NIH and Vanderbilt. Vanderbilt will either take his word as gospel or dismiss his diagnosis and study me, and I have no idea which way they will tilt, but if they decide not to accept my case, it could mean YEARS of more testing before they will consider my case again.

The most insulting part of the visit with this douchebag is that he spent more time demanding to know why I wasn’t on antipsychotic meds. I am having some issues with word recall, which apparently he views as a clear sign of being psychotic. Well, that and I have this condition that no one can seem to name up to this point. He performed physical tests including forcing me to fall, all the while holding onto my hips to assist me to the next starting point because my legs shudder and I list to the right during any physical activity and I wasn’t allowed to use my cane. Then he had the balls to tell me that I was just having facial spasms. I couldn’t believe it. I said, “But you were holding me up because I couldn’t stand!” He acted as if I didn’t say anything.

This neurologist gave me the standard statement on my discharge papers saying basically “don’t come back.” I don’t make this up, people – it was there in writing. The list of doctors who will let me through their doors is tiny at this point. I would have to go through the effort of finding all new doctors to try this all over again if I wanted to get another referral to the rare diseases unit if Vanderbilt denies me this time.

I’m not crazy. I just need doctors to set aside their preconceived notions and overinflated egos and listen to me, because I have had six years of this, compared to their one hour with me and my pages of documentation that they won’t read anyway.

I sat down on Thursday night and wrote this to the doctor and his nurse. I don’t think it will change what goes in my chart but I wanted to say it anyway:

“Regarding Dx of Facial Spasm:
Just to be clear, my primary dx should NOT be functional facial spasm. I am preparing documentation to submit to the NIH through Vanderbilt and I would like it to be accurate. My symptoms have always followed the same pattern, in this order: vertigo, fatigue, slurred speech, uncoordinated walking and then ptosis. Every shunt revision has been performed after all of the symptoms have presented indicating that the shunt has clogged or broken. My shunt has been clogged since it was placed on May 11, 2015. The symptoms resolve when I lie flat, which is why I don’t have permanent damage on an EMG (and why the test was unnecessary). When I lie flat, I can feel the fluid move away from the area that it’s pressing on, as if an orange peel is slowly being removed, and the pressure is relieved from my brain. That is why my eyes open and all of the other symptoms resolve. When I am upright, the fluid pools and the symptoms return. I demonstrated this in person on Tuesday, including laying flat as well as turning my head to the far left to open the shunt to drain off fluid so I could open my eyes fully.

The printout regarding functional facial spasm does not address CSF pooling in the brain or how doing stretching of facial muscles is going to help pooling of CSF in the brain. Since I have to travel hundreds of miles in the near future to continue research on my medical mystery, it would be helpful if my records were as accurate as possible and did not contain information that does not apply to me.

Thank you.”

Next week I’ll see my primary doc and will find out if I stirred up any shit or if I have been completely ignored.

What a difference having someone who loves me and who is in my corner makes in my life, though! The Saint Paul is like my hallelujah clouds during a shit storm. I promised not to spill all of our personal details, but there are things that I feel are safe to share. The Saint Paul has a big brain and is humble, which makes me weak in the knees. He’s also a good listener. I mean this in a very specific context: If I say that I need to be touched in a certain way, he doesn’t try to correct me and say that “every woman likes” what he’s doing and he’s not going to change it. Instead, he listens and makes the adjustment, and the reward is that I don’t have to fake anything and do the crab crawl backward.

I don’t know if he noticed last night but my eyes were leaking. It was for a much different reason than 12 hours prior when I was parked on my counselor’s couch, but it felt infinitely better.

I’m Just The Patient

Posted on by akiwifreund

Today was my big appointment with the movement disorder neurologist at the U of Minnesota, and it was decidedly anti-climactic. My first impression was that he was a young version of Derek Jacobi, pictured here:
Derek Jacobi
All of the doctors seemed to be excited that I was scheduled to see this particular one and told me repeatedly how thorough he was. In fact, I was supposed to see him over a month ago, but he looked over my file a few days before I was due in and instead insisted I get my face tased (with an EMG) before seeing me, which pushed my appointment back so that he could rule out myasthenia gravis (a second time). I knew I didn’t have it as of 2010 and I still don’t.

This doctor was short on bedside manner, so I immediately shortened my answers and didn’t elaborate on anything. We went over my family’s extensive history of autoimmune diseases. He made me walk and do things with my eyes closed to deliberately make me fall (which made me sweat and because I was under so much stress, the tremors started up almost immediately). He shook my shoulders, sending white hot pain through my left shoulder that I’ve been going through PT for but am going to get an MRI for after next Friday because I’m not healing – I spent three years laying on that shoulder because all of my surgeries were done on the right side for that length of time, and the pressure really messed up the tendons and ligaments.

After all of that, the doctor told me that his nurse gave me the website in December that I should have checked out on movement disorders. He must have seen my eyes glaze over and the stubborn set in my chin because he left the room and returned with screenshots of the website. I politely folded them into squares and stuffed them into a pocket in my purse. He said that a doctor from July of 2015 believed that I have a facial movement disorder. I told him it was news to me, since the only thing that was said to my face was that I wasn’t a good candidate to have surgery to relieve the pressure on my optic nerves. This doctor said that the other doctor may have chosen not to tell me that I have a movement disorder because there’s “nothing that can be done about it anyway.”

This entire conversation is deeply flawed. First, I don’t have a facial movement disorder. I have a problem with CSF pooling in my cranium while I’m upright and it presses on some of the nerves leading to my face as well as my cerebellum; as soon as I lay flat, the fluid moves away from the area and I get full functionality back. Second, I have plenty of issues in which “nothing can be done” for them – including alopecia universalis, though he was quick to point out that someone was doing a study. I told him that it was low on my list of priorities. Third, I’m the motherfucking patient. Doesn’t it stand to reason that if this is one or more of the thought process of the doctors that it should be discussed with me?

When it was time to go home, the cab driver that got the dispatch to take me home pretended to come and pick me up but then acted like I didn’t show up – even though I was outside sitting on a bench in between approaching every cab that rolled up asking if they were there to pick me up, so it took me an extra hour to get home after I had to call dispatch to bitch.

I really could have just stayed home.

In fact, I would have benefited from a day in bed. I predicted that I would be laid out for a good week after last Saturday, but I think that it was an accurate call. Now that I have an honest to goodness boyfriend, we’ve been trying to do activities that I can actually handle for a few hours. There was a flea market/antiques expo at the state fairgrounds and I thought we could just take the bus because it stops right outside my building and seemed to spit us out right at the fairgrounds gate. I was not a good planner for this trip and we ended up doing a lot more walking than we thought – and it wasn’t like we had a choice, no one could do the walking for us. My phone tracks my walking automatically and I wasn’t surprised when I saw 2.5 miles for the day rather than my usual high of 0.5 miles. By the time I climbed the steps to my building, I was visibly shaking and was fighting fatigue tears.

But damn, this boyfriend rocks. The Saint Paul is loving and affectionate, and goes on food runs and lets me stay behind so I don’t have to get out of bed. I have begun meeting his family and friends, and he is in the process of meeting my people.

Most importantly, we have said the “L” word, and meant it, and will continue to say it. When someone great comes along, you absolutely can’t take for granted that they just automatically know how much they mean to you or how much you appreciate them. I’m infinitely grateful to the universe for nudging me in his direction.

And then there were two.

Ch-Ch-Ch-Changes

Posted on by akiwifreund

I’ve been laying low for a few weeks. Actually, that isn’t quite right – I’ve had to put on makeup nearly every day and wear a bra and be polite and make sure my pants aren’t falling off of my ass every time my name is called and I stand up because of non-stop appointments and activities. Most of the time it’s exhausting because my brain is being smushed like people have sent over a few of their puppy-monkey-babies to sit on my head and bounce around a little. At the end of each day I’ve had very little energy to do much else than watch my TV boyfriends Jimmy Fallon, Trevor Noah and Larry Wilmore on Hulu.

My uncle’s memorial service was Monday. There was quite a large turnout – something in the neighborhood of 300 people, I think. It was lovely and sad, and especially tough to see pictures of my aunt and my dad on the slideshow that was run during the service, who preceded my uncle in death by 20 years. Every single one of us cousins on that side lost a parent at a very young age. Thankfully there were a few funny stories and pictures to break up the sadness.

About a month ago I went to a session at a health crisis center where a musician brought his guitar and we had a little singalong activity. It was nice to sing – it’s one of my favorite things to do – and I have a decent voice, and I met a woman who seemed to be fairly friendly. The thing about the crisis center is that people attend whether they have physical illnesses, mental illnesses, or both; this woman happens to have mental illnesses, though I didn’t know it when she started talking to me. She gave me her number and said she would be interested in getting together because she wanted to expand her friendship circle.

Well, I didn’t know it at the time, but “expand” really meant that she wanted to make A friend. One. Me.

I had new orders put in for nerve impingements in both my left shoulder and right hip, so I’m going to PT twice a week now. Besides that I have other appointments for counseling or additional doctor appointments at least once a week, including an EMG for my head and face tomorrow morning. I’ve still got the tremors going on in my legs from being upright so much.

I didn’t realize that the lady didn’t fully expect me to actually call her, or that I was the only one polite enough to give her the time of day. However, slowly as she cornered me on the phone day after day for a few hours at a time, she revealed she had some issues with obsession and stalking, including the fact that a man who attends her church has a restraining order out on her. At one point she told me that she thought that he was trying to be friends again; what did I think? I told her that he might have been polite, but she should keep her distance. I finally told her that I can’t talk on the phone every day. Now she texts me every day and asks if we can go and do stuff like shopping. I tell her every day that I have appointments and it’s really difficult for me to be running around all of the time. Now I’m at the point where I’m going to have to be firm and tell her that I just don’t have the energy or health to be her one and only friend. I’ll let y’all know if I come home to some rabbit stew and her standing in my bathtub with a knife.

I have been working on making the changes to my diet to make it anti-inflammatory, and that includes experimenting with ingredients. Today I made crispy chicken, which was breaded with garbanzo and fava bean flour (okay) and coconut flour brownies (eh), and I’ve determined that coconut flour and my esophagus do not mix. I’ve tried three different recipes that are coconut flour-based and they burn going down every time. I don’t think it’s a true allergy because I don’t get hives or asthma, but it’s still unpleasant enough to stop trying to make it work.

Four doctors now at the University of Minnesota have told me that they don’t think I have late stage Lyme, and they’re not quite sure what I have. No one can figure out why the hell I can lay down and make the CSF move away from wherever it’s pressing on my brain and I can open my eyes again. I talked to my PCP today about the possibility of getting my shunt removed completely since it’s not draining properly anyway and it’s just causing me pain now. It will probably be another six months before I will be able to go under the knife for that one since I first have to jump through the hoops for the pain doctor. I finally got the letter for the NIH Rare Diseases unit from my PCP and started that process tonight. Now I’m back on the rare disease boat.

Last, and most exciting:

I am no longer on OKCupid. I mean, yeah, sure, I was getting some really nutty stories to pass along (and I certainly haven’t told them all yet), but it’s because The Saint Paul really is worth it. The Saint Paul is close to my age, never married, no children, heart of gold, helpful, accommodating, matching sense of humor, curious, well-read and liberal. He supports my feminist stances and most importantly does not view my body as “his” space, as so many men still do with women. We had the best first through fifth dates, the last one involving him taking me to his favorite animal shelter so I could pet kitties. (I brought a shirt in a plastic baggie that I could change into so I wouldn’t contaminate my jacket on the way home.)

Stay tuned for further developments on the love front.

It’s Not Easy Being Green

Posted on by akiwifreund

I thought I had a diagnosis. In fact, I thought I had THE diagnosis: Lyme, picked up seven years ago on a hike down into the Grand Canyon, yadda, yadda, yadda. Don’t get me wrong, I still have it.

However, after seeing a physical therapist, a pain management specialist and the neurologist who specializes in movement disorders at the U of MN, they are throwing me back in the rare pool. They have never seen anything like my symptoms even with the confirmation of the antibodies particular to the Lyme bacteria. The PT and the pain management doc both marveled at my party trick, which is to lay flat or tilt my head so it’s perpendicular to the floor, which moves the fluid off of the area where it’s pooling when I’m upright and I can move my face again. The neurologist refused to evaluate me and instead scheduled me for an EMG of my face and head. Good thing I am a baldie, because it will be easier for the doctor who performs the EMG to easily find landmarks and previous poke marks. They want to rule out myasthenia gravis (again).
I’m now getting a little overzealous on recording my symptoms again. I know of a couple of people who developed POTS at the same time as their Lyme infections, and so now that’s on my radar too. But the issue with the CSF is really puzzling.

I signed up for a “scholarship” through the Hydrocephalus Association so that I can attend the hydrocephalus conference at little or no cost, which just happens to be going on about 10 miles from me (as opposed to another city/state) in June. I had to provide information as to why I was asking for the scholarship. I refrained from saying “Because I’m a freak of nature” but I did indicate that I would like to know if there are any new shunts out there that I wouldn’t be allergic to, or discuss possible advances in surgery and technology that would allow me to get an operation to fix the issue instead of having to implant a shunt at all. I’m hoping that some of the doctors attending will be interested in my demonstration about shifting the CSF away from where it’s pressing.

Oh, and I deactivated my OKCupid profile. I’m getting to know the man who considers himself a feminist – you know, right up my alley. So far no red flags, and he actually follows through on being a decent human being. Small children like him. He volunteers at an animal shelter. First and foremost, he’s nice to me.

What I Know, What I Don’t Know

Posted on by akiwifreund

Okay, first of all, a very specific search appeared on my radar yesterday: “Indian sites for compression hose fetish.” Hats off to your freak flag flying proudly, whomever you are. Also, hats off to wanting your objects of desire not to have to suffer from varicose veins. I’m sorry that my mention is probably repeatedly bringing you back to my blog; I wish you luck.

Second, I got a diagnosis.

I’m going to start where I think I should, and that is May of 2009. I was living with the very controlling and very violent Drummer #2 in a beautiful 3 bedroom/2 bath on a man-made lake. My friend who is a CPA and has taken care of my taxes for 16 years as of this year flew down from Cincinnati. Drummer #2 was on the verge of nearly smashing my head with a drinking glass, but I didn’t know it. He made me feel like absolute dirt because my friend was visiting, so much that the friend had to stay at a hotel rather than in the spacious home we occupied.

My friend rented a car so that we could run around the state of Arizona, and most importantly to the Grand Canyon. We hiked down into part of the canyon; it was not easy for me because I had already had fibromyalgia since I reached adulthood, but I did my best to keep up. I was so happy that my friend had made it down to visit, even though the nastiness of Drummer #2 put a damper on things. Drummer #2 didn’t accompany us and that was absolutely fine with me. I wanted to be able to relax. My friend flew home and life went back to walking on eggshells to try to not make Drummer #2 angry – which proved impossible. The week after that trip was when everything went down with the asshole and I moved out in a hurry.

Fast forward to October of 2009: I went to the emergency room because I developed a stiff neck and excruciating pain. Every time I moved my neck I cried. I didn’t sleep for four days and was starting to hallucinate. The ER doctor had no explanation for me because I didn’t have any other symptoms like a sore throat or a fever. He sent me on my way with muscle relaxants. The pain didn’t abate for a full week.

Around the same time, the naturopath I was seeing started documenting new symptoms for me, mainly that I had a constant rocking feeling, and I was always nauseated. We tried different remedies including Dramamine, but nothing even made a dent.

Have you thought up a diagnosis yet? Just wait.

In July 2010, I developed crushing fatigue. I drove over to San Diego mid-month to spend time with a man from Germany who made yearly trips to Comic-Con, the big one. I struggled to walk a few blocks between my hotel and nearby restaurants. He was used to walking up to ten miles a day; I felt a bit ashamed because I felt as if I embodied the lazy American stereotype. I was also plagued by deep bouts of vertigo to the point where I nearly fell down an entire outdoor cement staircase.

During the last week of the semester at school in July, I had to drop out and not take any finals. Fatigue and vertigo ruled my life. My parents were concerned because I spoke like a zombie, no intonation – very unusual considering I was a theater major in school. My speech was slurred, the top portion of my face became paralyzed, and my head began to nod uncontrollably. Because my body was under so much stress, my cortisol levels shot up to ten times the normal amount.

Have you guessed it yet?

In July of 2011, I finally started getting relief from the pressure in my head because a neurosurgeon installed a shunt. However, I had a total of 10 shunt surgeries in 46 months because my body fights them, clogs them, breaks them, strangles them. I have had horrible abdominal pain since July 11, 2011, because that is the first day a drainage catheter began living within my peritoneum and my small and large intestine, and there is a war being waged 24/7.

46 doctors and two states later, a naturopath in Saint Paul suggested I get some blood tests for Lyme disease. I ended up having to pay full price for them up front because they were not covered by insurance/medical assistance. I will admit that I didn’t think I had Lyme but I just wanted to rule it out like I had done with everything else up to that point. Two of the tests had inconclusive results; the third one lit up like a motherfucking Christmas tree.

I have late stage aka chronic Lyme, and have had it for nearly seven years. It wasn’t on anyone’s radar. Why should it be? I didn’t have a bull’s eye rash. I lived in Arizona, a state with a very small tick population compared to other states. The CDC has very strict guidelines about what can be reported for Lyme and I may not fit their parameters; however, I am still going to contact the state health board and let them know I was infected while I was a resident in the state. I think that only 8 cases have been reported to the CDC for Arizona. I don’t even know if they will take my data because I was diagnosed based on antibodies specific to bacterial exposure, and they only want tests showing the bacteria, which may not be detectable because of the time that has passed.

I know that most of the doctor visits and labs are not covered by insurance, so I will truly be destitute in short order. They are not covered because insurance companies and even the government get bucky about late stage/chronic Lyme, sometimes refusing to acknowledge it exists. There are now temporary laws in place in Minnesota that allow physicians to prescribe antibiotics far longer than they have before, for years instead of months, and the law is set to expire in 2019. I feel like my diagnosis is sitting on the cusp of being dismissed and being accepted. I don’t know how they will deny that my facial paralysis ties into the positive results on the blood work, but I’m sure they’ll find a way to tell me I just need counseling. It wouldn’t be the first time I heard that.

I don’t know what will be irreversible with the neurological problems when treatment starts. I think the facial palsy and ptosis may go away. I think the tremors will take years to adios if they stop at all. The left side of my body has lost some sensation. For example, when I am descending stairs, I have no concept of the pressure my foot exerts on the steps (and vice versa) and so must go very slow. I have been doing exercises to counteract the bed rest and try to gain some of the muscle I have lost, but I always feel like my nerves are disconnected on my left side, and I tire much more easily when I work on that side. I’m also having some cognitive difficulty including word recall. As I type, I fight to spell words correctly – I have developed some weird form of dyslexia. If you knew how particular I am about spelling, you would be as alarmed as I am. Sometimes it takes me a dozen tries to write single words correctly that would have been a breeze previously. Ultimately there is a 50/50 chance that treatment will work, and it may take years to get any positive results.

Besides notifying the board of health in Arizona and Minnesota, I have decided to write letters to my team of doctors in Arizona to let them know about the diagnosis. I am not trying not to think in terms of, “Oh, if only someone would have tested for Lyme, I wouldn’t have had to have 10 brain surgeries.” Honestly, the disease has really fucked up my body, and it’s possible I would have needed the surgeries even with the right diagnosis.

If my symptoms do abate, I’m going to have a serious conversation with some neurosurgeons about removing the current shunt. It has adhered to my chest and the abdominal pain is still constant, and I just think I would have an easier time without it. However, that also leaves me more vulnerable to CSF leaks – and I don’t ever, ever want that pain again.

Lastly, I don’t know if this is a “rare” disease. The data is poor. On a survey of health, chronic Lyme rated the worst for quality of life as outlined in this article – worse even than congestive heart failure, multiple sclerosis, fibromyalgia, diabetes and depression. In other words, I truly won the shit cookie.

Chronic Lyme Disease

 

Are You There, God? It’s Me, Chelsea

Posted on by akiwifreund

Judy Blume wrote from the perspective she was most familiar with – her own. It’s what we all do. It’s what makes our stories unique, especially when we look at the story teller as female vs. male, as tall vs. short, as narrow vs. wide, as black vs. white, as wheeled vs. walking.

Something that Judy Blume would have no perspective on is the experience of a girl going through puberty and dealing with questions about her body and her sexuality while also experiencing a physical disability. For instance, would it be so easy to use a tampon if your hands did not have the dexterity and strength that most girls had simply because you had cerebral palsy? It seems unfair that a girl with CP have to advertise to the world that she had to install a brick (aka pad) in her underwear because a tampon was just too damn complicated.

For me, my baldness has flavored many stories. I didn’t choose to lose all my hair. I had absolutely no control on it falling out, and I have no control on it growing back. However, wigs have gotten so good that I can “pass” to the untrained eye. I still get a once- or twice-over.

This woman is hugely disappointed because she has never been catcalled. I’m sure she’s faced many, many types of discrimination, but she is heartbroken because she has never been desired simply for her appearance. She is always going to be liked for her personality, and only after she has been passed over by many, many men. She has never written in her journal that some stranger said something sexual and inappropriate to her, and she told him to fuck off and then ran-walked away.

Right now I only use a cane to help me walk – my walker stays in my closet. But I know a bit about what she feels. I am treated completely different when I’m walking with my cane compared to no cane. I even feel different, more vulnerable without it, because I know that when my feet are slapping together and my face is paralyzed, I’ve lost all desirability.

http://www.huffingtonpost.com/the-establishment/nobody-catcalls-the-woman-in-the-wheelchair_b_9130226.html

 

Digging for Gold

Posted on by akiwifreund

This morning, when I retrieved my mail while I was waiting for my sister and her husband to arrive, I received a notice from the Social Security Administration regarding my disability appeal. They said:

*You have the ability to stand and walk without assistance. (That’s a blatant lie – I use my cane for everything.)
*You have the ability to use your hands and arms to perform tasks. (Apparently it’s not a requirement for me to see what I’m doing.)
*You are able to get along with other people for short periods of time. (It’s called Minnesota Nice, bitches.)

“We do not have sufficient vocational information to determine whether you can perform any of your past relevant work. However, based on the evidence in the file, we have determined that you can adjust to other work.”

What would be really helpful is if they included a list of employers who had job offers for me and would not require me to be upright at any time. I can’t see well enough to travel to a location outside of my home, and most employers at least want an interview. So their insistence that I work “somewhere” is pretty weak, considering they don’t have an prospects lined up for me. (I don’t want to hear, “That’s how they do it.” I know they’re assholes.)

The next step is for my attorney to file a request for a hearing, which I understand takes 12-15 months to occur. In the meantime I’ll continue to go to doctor visits and try to find someone who can put a name on this disease and tell me what to expect.

This morning I went to the surgeon’s office at the U of MN to have my wound checked. When he put a fair amount of pressure on it, I started yelping, which led him to believe that there is still some pockets of pus hanging out back there.

Rather than going through the process of shooting me up with Lidocaine and slicing down deeper and purging out more junk, the surgeon took the stick end of a swab and used that to dig around in my wound – think of it as a meat tenderizer, he just kinda made hamburger out of my flesh – without any topical numbing whatsoever. I broke out in a sweat and I had tears rolling down my face. I knew I had to lay still but I was also fighting to get away from him and just make the PAIN STOP.

He said he was stepping out for a few minutes to allow the bleeding to die down; about 10 minutes and a good, sobbing cry later, his nurse came in to re-dress the wound. I’m glad I had that time to myself.

 

 

That Girl Is Poison

Posted on by akiwifreund

Recognize this phrase? I have a station set up on my Pandora titled “New Edition,” and since some of the members of the singing group New Edition split off and formed Bel Biv Devoe, the song “Poison” comes up on my play list. Bel Biv Devoe sang about the dangers of getting tangled up with a woman who was bad news; however, it’s not just romantic relationships that suffer when someone is nasty or devious – friends can be poisonous too.

I am eternally grateful to the friends I have made over the years who tolerate my weirdness and bluntness. Without a doubt, I am humbled by the friends who have mopped and sanitized my house when I have returned from the hospital. I am indebted to the people who have shuttled me around to doctor appointments and grocery store runs, and who have replenished my stock of food and supplies. I have tried to be a good friend in return when I have been able to, which admittedly has been very infrequent for the past 5.5 years because I can’t seem to stay well enough to be out of bed for any length of time.

Unfortunately, because I have the reputation of being a good listener and the voice of reason, my bedridden status has trapped me into being something of a therapist for some. One friend helped me get to a doctor’s appointment about five years ago. This woman and I had become friends back in 2006 when I was working a couple of jobs to pay for my second trip to Europe. That one ride of eight miles nearly cost me my sanity.

Because she found out that I was stuck in bed when I called her to help me get to the appointment, I believe she saw it as an opportunity to unload all that was bothering her – after all, I didn’t have anything better to do, right? This friend was going through a nasty divorce. She would call me at all hours nearly every day, crying and asking me what she should do in certain situations. She would never actually take my advice.

Our interactions became more strained. I finally resorted to telling her, “I don’t know what you should do” every time she called with a new crisis. She switched to texting me instead of calling me. I’m not sure if she thought my answer would somehow be different. Just for the record, it wasn’t.

This woman had a good heart, and I did get a ride from her when I needed it most. I just did not think that I was forever obligated to take on the stress of her failing marriage. For that reason, I cut her off completely. Subtlety wasn’t working, and telling her I was exhausted and stressed from fighting to be heard in doctor visits had absolutely no effect. I feel a twinge of sadness when her birthday shows up on my calendar, but I know that if I pick up the phone and wish her a happy birthday, the cycle starts again.

Another woman I became friends with was introduced by a mutual friend. We became acquainted after we spent a holiday together; I brought a movie that she had watched many times in her native country as a young girl, and she translated the film for us as it did not have any subtitles. I’m going to christen her Ms. Lederhosen.

I met Ms. Lederhosen as she was going through a nasty divorce with her second husband. I had suggested we get together for movies or nights out because it seemed like she needed to do things that would distract her from all of the emotionally draining stuff she was going through. Unfortunately, it was all she would talk about. I’m not exaggerating when I say that. I could say something like, “This tomato soup is good.” Ms. Lederhosen would reply by saying, “Oh, R. (her ex) likes soup too. You know, when we were married, he used to make me take care of his daughters, but they were lazy and did not like me. I would tell them to do something and they would go to their dad and he would tell them they didn’t need to do it.” It’s how every conversation would go. Everything tied back to her ex, no matter what I said, no matter what I tried to talk about.

I remember one time we made plans to see a movie. When we picked our seats out and got settled with our beverages and snacks, she started talking about the ex. The lights dimmed and the movie started; Ms. Lederhosen was not letting that stop her. Other patrons in the theater started saying “Shhhh!” loudly, turning towards us. She wouldn’t shut her trap. I told her that we should wait to chat until the movie was done. She kept talking in a loud voice because she had to finish that story. Well, she finally did…and then throughout the movie, she ran a commentary on what was happening on the screen. At that point I made a mental note to never see another movie in the theater with Ms. Lederhosen.

The ex was dragging out the divorce, filing extensions and demanding spousal support. Ms. Lederhosen was constantly calling and texting to rehash what he had done. At one point she asked me to proofread letters and documents for her because they were going to be used in her case. I would always set aside what I was working on and comb through her submissions because I knew how picky judges could be.

Ms. Lederhosen finally decided to pursue her U.S. citizenship. She didn’t have many friends, so she asked me to prepare a letter of good character for her attorney. Again, I set everything aside and whipped together a professional piece to convince the Court that she was a productive member of society.

She didn’t care for her job or boss, so Ms. Lederhosen sent me her resume so I could send it out to my contacts and enter it in my employer’s database. She wanted to respond directly to her ex’s demands through family court but didn’t want to pay her attorney to do it, so I arranged for a friend who was a paralegal in family law to assist her.

Ms. Lederhosen met a man through a woman who facilitated a social group for foreign-language speakers. I had hoped that meeting someone new would calm her down regarding the ex and encourage her to discuss other items of interest, but no. She even told me that her new man was complaining that she was too focused on the ex.

I was able to meet the new boyfriend when Ms. Lederhosen brought him and her little sister over to my house to visit; it was her sister’s first time in the U.S., so I made an effort to speak slowly – her English was good, but there is always a huge adjustment period when anyone is suddenly immersed in a country where the language is not their native tongue. Often Ms. Lederhosen would interrupt to talk about her ex. At one point, her current boyfriend grabbed her face, squeezed her cheeks and said “Stop talking.” She didn’t, of course. Her sister got completely put off and eventually just fell asleep on my couch while the boor hijacked the conversation.

A few months later, I had reached the point of blinding pain with my shunt – I had developed an uncontrollable leak. Ms. Lederhosen had indicated that she was at her boyfriend’s house but that if I needed a ride to the ER, she was more than willing. I took her up on the offer. They didn’t end up keeping me to bring me into surgery as I had hoped, because at that point they wanted to figure out which parts of the shunt I was allergic to, which would take months. They sent me home with big bad painkillers instead.

Facebook can make or break friendships, and in our case, it broke ours. Actually, for me it was the last straw. I had posted a story about a product that was being given to girls in sub-Saharan Africa to allow them to continue safely attending school during the bleeding days of their menstrual cycles. This charity was distributing silicone cups that could be used to collect the fluid for up to 12 hours and then be emptied and washed in private. Well, Ms. Lederhosen did not like that at all.

She hijacked the post by first saying that she would never want to use a product like that and that she was perfectly happy with her birth control pills. I explained that birth control pills were not an option in this region, and that it was a much safer alternative for the girls instead of their normal methods, which included stuffing their bodies with dirty rags, newspapers or mud. Ms. Lederhosen said she asked her boyfriend’s mom, and she agreed that she wouldn’t use a product like that either, and they were stupid for not using birth control pills. I explained that in this region, pills were not readily available or transported easily, and not everyone could or should be on hormones, and that the girls just really wanted to attend school and the cups were a viable option. Then Ms. Lederhosen posted a huge paragraph about how American women are stupid, fat and lazy, and she was able to lose weight by eating organic foods and exercising (which had nothing to do with what was being discussed).

I blocked her on Facebook. It’s no wonder she has few friends! Unfortunately, my phone at the time was not able to block calls or texts, so for two days she sent me all kinds of nasty messages about how she was prettier, smarter, more successful and thinner than me. Ms. Lederhosen told me how I was jealous of her relationship with her boyfriend, and how my college degree was the equivalent of elementary school in her home country. I sent back one message saying I was not interested in competing with her, and her messages just got nastier. She told me how she was a much better friend than me because she drove me to the ER that one time; of course, she conveniently forgot about all of the ways that I tried to help her when she needed it. Finally she stopped and went radio silent.

Two months later I got a card without a return address. I opened it to discover it was a note from Ms. Lederhosen, telling me she missed me as a friend and that we should be friends again. I didn’t have a return address for her and so couldn’t send anything back, and her info had been deleted from my phone long before that. A week later I got a text message from her saying that she didn’t hate me anymore and that we should be friends. I again told her that I did not want to compete with her, and that she said horrible things that made it difficult for me to want to be friends with her. Well, that just set her off again – 16 messages of vile, nasty words.

Around Thanksgiving of 2015, I received another text from her. Ms. Lederhosen said that she missed me and that I probably still had some bad feelings, but she was there for me if I needed her. The response that I didn’t send but really wanted to? No fucking way.