Back To Life, Back To Reality

I had the pleasure of planning my arts high school’s 25th reunion for my classmates. It’s difficult to explain, but our school was unlike any other that most people have attended. It’s a public school and we came from all over the state of Minnesota, we had to audition or submit portfolios as well as letters of recommendation, we lived on campus like a college, and we created life-long friendships (most of us). I’m not saying it was without flaws. But going to college was a complete let-down because we already did it all, and our skills were senior level when we went to our respective schools post-high school.

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The reunion officially lasted nine hours. We started with performances, some dancing, I handed out random door prizes (which included ramen, Pop Tarts or macaroni and cheese plus sticks of margarine but NOT milk – because we never had milk; also Nerf guns, and cassette tapes such as Crash Test Dummies, The Sundays, REM, M.C. Hammer, Bullet Boys, anything that would have been released by 1992). Then we headed over to a pub that served microbrews and sausages where whomever couldn’t make it to the portion at school hung out with us there. We were officially done at 10 pm, but some people wanted to keep partying, so they went back to one couple’s hotel room and kept it going until 4 am. I didn’t – I was toast.

(By the way, the picture with the classmates trying to pull open the doors is something I didn’t find out about until later. They were giving themselves a tour, not realizing that they locked themselves in an area and they would have to wait for someone to randomly walk by and let them out.)

Our turnout was excellent. My classmates are literally scattered around the U.S. and the globe. I haven’t lived in Minnesota for 20 years and would have been counted as an out-of-towner if I hadn’t been forced to move back because of my circumstances. I know that I have classmates in Sweden, South Africa, the UK and France for sure, but I’m also sure that I’m missing some places. So to have this many show up is considered a small victory. And everyone was helpful, mostly sober and didn’t want to leave.

When I was attending school here, my major was theater (located directly to the right of the dancing space where everyone is slapping hands and their shoes are off). I discovered there that I had a natural affinity for organization and detail. So that was the reason that I gave everyone for wanting to organize the 25th reunion.

But I had an ulterior motive.  Two years ago, and even continuing through to today, a lot of the classmates that traveled back for the reunion (either by driving or flying) have helped me. When I relocated from Phoenix to St. Paul, they contributed to a fund. Sometimes they organize and send me gifts. A lot of them have their own hardships to worry about, so I appreciate their contributions even more for that reason. So the fact that I could work out every damn detail for them and all they had to do is show up was great – and even better that they all had a really great time and didn’t want to leave. 

Unfortunately, I did have to ask for some work from a few of them, but being the wonderful people that they are, they stepped up and said of course, and blew the rest of us away. The school was under great scrutiny and was nearly closed, and I had gone to all of the state senators and representatives, asking them to come to about an hour and a half of our reunion to meet us to see what had become of one of the first graduating classes from this school. One of the representatives, Mike Freiberg, happened to be a classically trained pianist and agreed to accompany our opera singer – and wow! It was fantastic! In all, we had two writers, a violinist, an opera singer, and a dance instructor.

Pictured below is an example of many of the lockers – students are allowed to paint them however they choose. Also, the woman in the phone booth is one of the readers from the performances. The phone booth is an infamous one; it was down the road from us and is from before the advent of cell phones, and we all used to walk down the road to use it when we wanted privacy. 


So for the week after the reunion, I stayed in bed. It was totally worth it. I love these people. Some of them I’m lucky enough to see frequently, and some I suppose I’ll have to wait another 25 years to see, but we know we had a unique experience and kinda feel sorry for people who had to drag through regular schools. We had a completely amazing experience for our junior and senior years.

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Today, I had a doctor’s appointment for an outpatient surgical procedure. I’m not going to go into detail for what it was. I was just dreading it. So I got the usual notification from the cab company that the driver was on his way, and then I got a notification that he was outside. So I went out. He wasn’t out there. Sometimes it happens that the notification comes about 60 seconds before the cab. I wasn’t alarmed.

However, after waiting for about 12 minutes, the cab still didn’t show. Today the temp was 91 degrees Farenheit, and Minnesota is humid this time of year. Also a problem: My high-rent building’s front door was vandalized, so I can’t actually get in with my key. If I want to enter the building, I have to walk around to the back, which is the equivalent of walking the length of a city block because the spaces between the buildings are fenced and locked off. I also had no idea when this cab was going to show. So I called the cab company.

They claimed he was five minutes away. I have a GPS tracking map and he hadn’t moved. I explained that the heat makes my condition worse. I also can’t go back inside because I can’t go in the front. They told me to just wait. This is what happens to me because the cerebrospinal fluid builds up in my cranium because my shunt hasn’t worked for two years:

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Many times my facial droop has been mistaken for myasthenia gravis. I can assure you that I do not have that. I can actually slosh my CSF around, and when I tilt my head parallel to the floor, the paralysis goes away within seconds. Also, my face is not swollen. The muscles on the left have relaxed because they are paralyzed.

I was actually stuck out in the heat for a total of 35 minutes. When the driver finally got there, he first tried to force me to cross the road to him. I can’t see very well like this – this is as far as my eyes will open. When he finally came to my side of the road, he parked up the street so I had to walk to him, even though there were spots open in front of me. When I got in the car, I asked him to turn on the air conditioning. He told me I had to wait until he “got going.”

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When he finally did turn on the a/c, it was at the lowest setting to spite me. I had to tip over in the back seat to take the pressure off of my head, which at that point was absolutely unbearable.

When I got to my appointment, they took me back to the exam room and got me on the table. However, I wasn’t doing so well. The nurse and the PA both said I looked grey and the PA reclined the table while the nurse ran to get me some sugary drink. I whipped off my wig and they slapped wet cloths on my neck and head. I could tell my pulse was all over the place, but I knew this wasn’t a blood sugar problem – those feel completely different to me. [I am getting checked for POTS next month.] When I got up from the table, I saw that I had completely soaked through the paper with my sweat, which was disgusting, but they said it was an obvious sign that I was in distress. We made sure everything had returned to normal and we got on with it.

I absolutely wrote up a complaint to the cab company, with details and times. They have a contract with my insurance company, and if this driver can’t handle medical rides, he shouldn’t get them. Period. 

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How Come My Disability Check is So Small?

This is something that I was trying to explain to people who don’t receive disability, but it’s something that’s invaluable to know if you DO receive disability or anticipate that you will be receiving it in the near future in the U.S. as well (as I hope to be by next year, dammit). Thank you, as always, sleepygirl.
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How to Get On

eightfoundlingsredoFoundlings by Marion Michell

Many people get a low Social Security check for many years and do not understand why this is happening or if anything will change it.

Lucky you! You have come to the right place to figure some stuff out.

Reasons Your SSDI Check Might Be Low

Reasons Your SSI Check Might Be Low

Reasons Your SSI May be Denied or Cut Off

What is the Difference Between SSI and SSDI?

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Big Help In A Little Package – TechCare Pro24 Ultimate Massager Review

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.

Back in 2007, I had a beast of a knee operation. My right patella (“knee cap”) was tracking wrong, meaning it was slightly dislocated, so it would cause all kinds of problems as I bent and straightened my leg and my patella slid all over the place – but not exactly where it should have. I also had damage to the underlying cartilage. Before surgery I was required to go through months of physical therapy to strengthen the surrounding muscles, and after surgery of course I had to recover. It took me a year to straighten my leg.

Anyone who has been through orthopedic surgery has had a run-in with a TENS unit. I was issued a big, black carrying case with a handle, multiple square pads and a control box with a dial. The controller had an on/off switch and the dial to change the intensity of the charge, and that’s it – no frills. You got what you got.

I didn’t have any expectations with this TechCare Pro24 Ultimate Massager, deliberately.
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In actuality, I was pleasantly surprised. The controller feels like it’s made of high quality metal, not cheap plastic. It has the capability of running two lead lines at a time, though the user can choose to run one lead at a time. The lead lines themselves are considerably long, which is useful if you need to reach around to the back of your body for any reason (which, if you’re anything like me, you will).
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I’ve been trying to walk outside while the weather has been cooperating, because I’m trying to get stronger. I have a lot of joint pain because of fibromyalgia, plus I’m in bed a lot to keep the pressure off of my brain, but the downside is that the rest of my body pays the price. Since I’m walking outside there’s a lot of variation in the elevation and terrain and my muscles and joints very quickly and loudly rebel. It’s the perfect time to put the TechCare Pro24 Ultimate Massager to the test.

I want to pick the right size of pad according to where on my body I want to attach the pads. This unit comes with three sizes:
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I chose to work on my right hip, which never fails to make its presence known. The big, rectangular pads are the best for that area of my body, so I decided to slap one on my back right flank, and then one on the top of my right femur.

The TechCare Pro24 Ultimate Massager doesn’t run on willpower alone; it needs actual electricity to roll. I’m always in front of my laptop, so I chose the option to hook up the unit to the USB portal for the juice.
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So as I had everything hooked up and charging, the next step was to choose the actual mode that would work best for what I wanted to accomplish, which would be to relax my right hip. I pushed the slide button over on the top so that the unit turned on, and then I could see the different choices for the massages for the most helpful option. Every time a different mode out of the six options are chosen, the strength returns to the lowest intensity so that the user can change it to his or her most tolerable level. I think this is a good thing because some modes felt more stinging than others, depending on the intensity.
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My favorite option that I found for my hip is the one that appears with the number “1” in this picture. As you can see, I didn’t even have to go to half intensity to feel the effects. The timer starts at 15 minutes but can be reprogrammed all the way up to 60 minutes.

At one point a friend called during one of my sessions, and I was so relaxed that he asked me if he had awakened me from a nap.

I did try it on other areas of my body – my neck, my left shoulder, my right quadriceps – and I tried out the other modes. The best thing to do is try the modes and strengths and find the best combination of style and length of time, because there’s no one-size-fits-all like there used to be with the old TENS units.

One extra goody that is included in the package is a chart of the human body and suggestions of where to place the pads to relieve certain pains.

This TechCare Pro24 Ultimate Massager is light years past that unit I had to use ten years ago for my knee rehab, and is much more affordable to boot. You can find it here – check it out!

Pat, I’d Like To Solve The Puzzle

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This week I’ve been taking care of stuff; taking care of me by walking to make myself stronger, taking care of medical records, taking care of clogs in my sinks and taking care of throwing out excess trash. It’s the medical records that sent into emotional pits, though. I was angry after reviewing a bunch of misinformation and it was rolling around in my head. But then I had an epiphany.

Back when I started having operations on my cranium, when my shunts were relocated from my back to my brain, my neurosurgeon remarked that my meninges were incredibly tough to break through. I don’t believe he’s ever noted that on my medical records, though. But his memory is like a steel trap so if I went back to him, he will probably be able to recall it with certainty. It certainly stuck with me. He said he had only seen it once before in his lifetime.

And then there was this published paper by Jonathan Kipnis where he explains that he and his team discovered lymphatic drainage vessels in the cranium. They weren’t known about before because when autopsies and dissections were performed, the lymphatic vessels were torn and destroyed because of their fragility. This paper was published in July of 2015; I traded emails with Jonathan in November of 2015. He explained that he doesn’t actually work with humans in clinical trials so he couldn’t help me, but after I connected the dots this week, I emailed him. I’m not sure I’ll hear from him.

Lastly, I have this mast cell activation disease diagnosis from Dr. Afrin. When I saw him in January, he told me that my outrageously high histamine level is probably what is making everything change and grow into scar tissue, including the tumor, as well as the tract along the shunt.

So here’s what I think is happening: Back in 2010 when I first started having the really bad symptoms, the meninges had already turned tough because of my high histamine levels, and the fluid can’t drain properly into the lymphatic drainage vessels like it normally would. That’s why I need shunts. The shitty part is that I’m allergic to the shunts. Just as an aside, this whole time I thought that the underlying cause was an autoimmune disease, but of course I had no idea what it would be.

So what now? That’s the question my mom asked. The tissue that has changed cannot be changed back. There is nothing on the market that I’m not allergic to. I’m at a high risk for aneurysm or stroke. This is going to kill me, there’s just no telling when. I mean really, who else do you know that is going through this? None of my doctors would be able to begin to guess.

Of course, I have to check with my doctors…but again, I’m the one leading them, not the other way around, which is almost always the way it is with rare disease. First I’ll see the neurologist and explain all of this to her, and hand her Dr. Afrin’s notes and Dr. Kipnis’ notes. I’ll see Dr. Afrin in August. After that, I’ll contact my neurosurgeon in Phoenix and roll this past him. I hope that he remembers that I was right about everything that I told him, even though some things took as much as 2.5 years to admit.

So for now I’m still waiting for my disability hearing. I talked to my attorney’s office and they called the person who sets the dates for the hearings, and they were told that hearings were being set for 18-22 months past the appeal filing. My last appeal was filed in February of 2016 (the initial filing was April 2015), so by the time I’m in front of a judge, I’ll have been waiting for nearly 3 years. Every state is different. I can’t get a rush unless I’m homeless, stage IV cancer, a danger to myself, or I have no access to care.

So I wait.  

A Really Adult Post About Male Sexuality

A friend posted this article on Facebook. Many years ago I had wanted to be a sex educator, so reading anything that has to do with sexuality in the clinical or psychological setting is fascinating to me. A friend pointed out that it’s an article that is probably aimed towards women who want to find out more about the penis. Maybe, but then again, maybe not. I think that women have to steer men in the direction of talking about these things, or at least feeling safer about talking about these things, just as this author did.

There are a couple of things that stood out to me. First, there are not many opportunities to examine a transgender penis, much less talk about one. They are often portrayed in television shows as grotesque, malformed masses only briefly glimpsed during bloody surgeries, never as final products. This article (and this picture) allows me time to actually look for as long as I want to and marvel at how far this type of surgery has come. I mean, really, genius! Go for the big penis! When I was facing my hysterectomy, I had jokingly asked my OB/GYN to make my vagina slightly longer because the big penises were posing a real problem. She laughed, of course.

Second, I had a partner with a micropenis. And neither of us handled it very well. I was in my 20s and had just moved to Arizona. He was quite handsome and we got on very well, but it all fell apart when we had sex. B. felt ashamed and inadequate, so he overcompensated to the extreme. He would demand that I would tell him he was “filling me up” when in fact the condom couldn’t even stay on. Fully erect, he was about the size of my thumb. B. was frenzied in his thrusting and when it was all over claimed it was the best he had ever had. I was just dazed. In the days after, I told him that I didn’t think that we were a good match. He kept asking why. I couldn’t bring myself to say it. But it wasn’t a relationship first and then sex, it was sex first, and I was just not equipped to bring him through the minefield. Of course I’m hoping that he found someone to love.

Third, I wish more men would quit porn. I mean it. The violence, the fake body parts, the fake orgasms, the fake positions, only being able to orgasm by jerking off fast and hard? It makes for a shitty sex life. And it’s not because I’m not doing enough to keep men interested. If you’re bored, then you’re boring.

Without further ado, here is the article: Me and My Penis: 100 Men Reveal All

How Not To Creep

Some sage advice from a fellow blogger. Don’t be a creeper. Just don’t be a creeper. Here’s how to make sure it doesn’t happen:
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My Friday Blog

Hello dear reader(s)!

If you are like many people, you have or currently do desire someone and may be worried about expressing that desire without being seen as a giant, disgusting creep.  Even if that statement has never applied to you, you may want to continue reading because it likely applies to someone who has or currently does desire you, and then you can use this to identify and head off the creeps in your life.  Heading off a creep can prevent the need to take the heads off creeps, which is much more favored by the legal system.

Despite what many fedora wearing neckbeards who think they are nice and call women m’lady believe, it is possible to express desire for someone without being a creep.  Despite what many desperate single ladies believe, it is possible to attract someone without sending random suggestive pics to their target’s phones.

So…

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Retrain My Brain – Gupta Amygdala Retraining Programme Review

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.

This particular series, The Gupta Amygdala Retraining Programme, is being offered by a doctor who was laid low by chronic fatigue syndrome (which I will shorten to the commonly known acronym CFS), which is also referred to as myalgic encephalomyelitis (the acronym ME for short). The Centers for Disease Control states: “CFS is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Symptoms affect several body systems and may include weakness, muscle pain, impaired memory and/or mental concentration, and insomnia, which can result in reduced participation in daily activities.” (https://www.cdc.gov/cfs/) The CDC also indicates on their site that despite trying their best to figure out what triggers CFS, they haven’t pinpointed the cause. It could be a number of infections, it could be autoimmune related, it could be something in the central nervous system; they’re just not certain.

I was given this program because I have fibromyalgia. Fibromyalgia shares some of the CFS/ME qualities – mainly crushing fatigue and pain that does not go away with a good night’s sleep. Dealing with constant pain and fatigue also changes your brain and your outlook, affecting the way that you interact with the people around you, as well as your ability to handle your own sickness, or wellness, as it were.

The very first thing I noticed when I opened up my packet was this map from Dr. Gupta.
20170522_092902If you can’t tell, this piece is quite large and almost covers my entire area rug. As we found out, it is an interactive practice piece that you actually stand on and use to help retrain your brain to stop negative thinking.

The other items included in the package were a workbook and a set of audio and video DVDs.
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I was signed up for weekly interactive web meetings as well. In our first meeting, we were introduced to Dr. Gupta, and informed that the web meetings were actually the most important part of the program, and that the DVDs, workbook and practice poster were supporting materials.

The web meetings were 12 weeks long total, so it is quite a commitment if you decide to join the program. And there is a lot of material to cover. However, if you think about it, some of us have been sick for years. I’ve been sick for two decades. 12 weeks is really a drop in the bucket. It’s just a matter of adjusting your schedule and making room, just as you would for a physical workout program. You want to lose the weight? You do an hour at the gym. You want to lose the disease? You do a few hours a week at the Gupta program. 

So what is amygdala retraining? Basically, it’s to stop the negative feedback loop so you can start healing. Your body feels bad, so your mind gets stuck thinking, “I’m not good enough, I don’t don’t deserve friends if I’m going to bring them down, I don’t deserve love, I’m a terrible person, I’m a loser, I can’t do anything right, I hate my body, I’m going to stay sick forever,” etc. If you can get rid of that negative feedback, you can also retrain your brain to start a positive flow of thoughts, including, “I will allow my body to relax, I will feel comfort, I will smile, I’m choosing health and happiness, I trust myself.”

And back to that interactive poster that’s on the ground: That’s the “Stop! Stop! Stop!” technique that Dr. Gupta often refers to as part of the retraining. He encouraged us through the course of the initial training to actually follow the steps on the poster: think the negative thoughts, then hold out our hands and think or say, “Stop! Stop! Stop!” Then we would breathe and smile, return to our loving self, then choose to take the loving path and be kinder to ourselves in our thinking, then visualize health and happiness. We would repeat these steps over and over again – at first slowly, then faster, as if picking up anything that feels clunky at first but then suddenly becomes second nature.

Throughout his sessions he often took breaks for us to breathe, or meditate. We also had time to ask questions or interact. Dr. Gupta warned us that there would be times when emotions would bubble up and sometimes get the best of us. I tend to be pretty stoic except when it comes to dealing with my neurologist and neurosurgeons, so I was surprised when even I had a web session that affected me emotionally. The point is to not hold everything back so that our ego doesn’t get in the way of getting better.

The DVDs and audio CDs are helpful because there are some meditations included, and meditation is one area where I always need improvement and assistance.

Dr. Gupta does advise for anyone going through this program that the changes will be gradual, and to not expect anything earth-shattering immediately; after all, anything shocking would set us back, not make us better. Six months would be a good goal for feeling a significant improvement if you do the work with sincerity. 

I’m grateful to have these materials at hand for the long haul so I can refer back to them as often as I need to – because there’s so much to learn, and I’ll definitely need a refresher from time to time. And Dr. Gupta records all of his sessions so that we may go back and rewatch (or if you couldn’t make it to the session in real time, you can watch at your convenience). I did personally notice a certain calmness and lightness after each session, and I do feel like my attitude has shifted towards all of my diseases; I’m choosing right now to be loved and to be worthy of love, and maybe that will shift again in the near future to another positive focus as I journey on.

Dr. Gupta’s Website:  http://www.guptaprogramme.com/

Is It Time For A Vacation Yet?

I’d like to take some time off from my daily life. I’m not sure if that’s allowed, since I have loads of time off already – my only job is to rest and get ready for the next doctor appointment. But still, I’d like to look at something other than these four walls. In fact, I’d like my old life back and a reason to take a vacation. 

Anyway, yesterday was my birthday, and a couple of friends flew up from Colorado, and we decided to brave the largest art event in the U.S. – the Art-a-Whirl in Northeast Minneapolis. What was happening in one warehouse would have covered what most cities considered an arts festival, but this event takes over miles. We just stayed within the limits of where the complimentary trolley traveled. Even with the trolley my phone tracked 7,000 steps for me yesterday. That’s a personal record (and comes with a cost, because I’ll be in bed for most of the week with the exception of one appointment tomorrow morning and Wednesday morning). My legs were having none of it. They were starting to spasm in the last building we visited.

I did pick up one little piece of art, which reminds me of a line I’ve heard over and over in my dating life:
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Genie In A Bottle – EnviroKlenz Review

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.

Have you ever gotten on an elevator an nearly choked from the heavy cloud of perfume or cologne that is hanging there? The worst part is that sometimes the culprit isn’t even there, they’ve just left a toxic plume behind them. I also dread shopping and walking down aisles that contain cleaning products like laundry soaps, air fresheners, fabric sprays and softeners, surface and floor cleaners, and dish detergents. Can I hold my breath for that long? Maybe. But inevitably I also break out from hives. Why is that?

Well, I don’t just have allergies. I have SUPER allergies. I have mast cell activation disease. When I tell people that I’m allergic to something, inevitably they ask me why I don’t just take a Benadryl and be done with it. Boy, if only it was that simple. Among a huge list of things, I’m allergic to “fragrance.” You would not believe what “fragrance” shows up in. And the allergy manifests in my body by showing up as a skin irritant – a hive – because it’s floating through the air, or my skin somehow comes in contact with it, and as an asthma attack. For instance, I have gotten nasty bouts of contact dermatitis that have turned into skin infections, all because “fragrance” is one of the ingredients in Dermabond and Dermabond was used on one of my many abdominal surgeries. Who needs Dermabond to smell pretty? I’ve never noticed a particular rosy smell to it, to be honest.

I see friends who themselves have allergies and asthma or kids who do and then wonder why they have uncontrollable reactions, and it’s because they load up on fragrances and chemicals. I mix my own surface cleaners and laundry detergent because I want my environment to have the best foot forward for me. But sometimes it takes a lot of rinsing and a lot of vinegar and a lot of airing to rid just-washed fabrics of even the most simple hand-mixed detergent. If I’m not careful, leaving any kind of fragrance in my environment can mean that I’m covered in hives and I’m wheezing all night rather than sleeping.

Enter the EnviroKlenz Laundry Enhancer. I actually tried this product via three different ways: a traditional top-loader machine, an HE machine, and hand washing. The idea behind it is that it neutralizes any scent that may still be incorporated in the detergent so that any additional rinsing or vinegar becomes unnecessary. Most importantly it’s chemical free and eco-friendly. 

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For the top loading machine and hand washing, you add your detergent and the EnviroKlenz Laundry Enhancer to the water first, let the water fill half full, and then add the laundry. The HE machine’s directions will be followed with everything being added in the detergent drawer as usual.

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After I got through all of my cycles of laundry, I laid down in it. I breathed deep. I buried my face in it. And I couldn’t smell anything. I waited to see if I got any hives, either on my face or my arms, because those are the usual culprits, and nothing happened. I waited much longer to see if I got a whistle in my lungs. Nothing.

Later I laid down again (because I don’t spend much time out of bed), and again, I didn’t notice any particular scent, nor any hives or asthma. Also, it’s important to note that I didn’t notice a specific sour smell to the fabrics. Sometimes when I do laundry I miss the old days of the “fresh laundry” smell – that smell that we have all been sold on by the chemical companies, that their manufactured smells are “fresh” smells, but then everything swings to the opposite side of the pendulum and just smells sour and flat, as if it has never been laundered at all. My fabrics didn’t smell either way, just neutral.

By the way, if you prefer a powder product rather than a liquid to achieve the same results, they have you covered!

One universal product from EnviroKlenz that I’m especially excited to try next is the Everyday Odor Eliminator, which is safe to use on fabrics as well as hard surfaces including hardwood floors. Do you do yoga? Do you want to freshen things up a bit? Put one part Everyday Odor Eliminator to four parts fresh tap water into a spray bottle and spray down your area, then wipe down the excess. It’s safe for pet areas too, including pet beds! They lick the pads of their feet – do you really want them to lick chemicals? No! 

Here’s pamphlet further explaining more of their products, and of course, I have already set you up with a link to their website. We have become far too dependent on chemicals and EnviroKlenz is a safe way to scrub your environment of toxins.
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Give Me A Break

On Thursday afternoon, I saw my 59th doctor, a neurosurgeon. At least, I think he was #59. I don’t feel like going back in my previous posts to make sure. I could be like that person who doesn’t want to admit that their birthdays keep happening so they claim to be 29 & holding.

The ride out was long. The conversation with the cabbie was lively. His name was Isaac. I found out he has a wife and five children who still live in Uganda. He goes back every 6-8 months to spend time with them when he has saved up enough money. I can’t imagine having to live like that, my loves living half a world away. He told me about the worst job he ever had (digging pits that were 20 feet deep, 16×16 wide/long with a pick ax and then having to haul away the dirt himself because there was no machinery). The pits were for storing water. We talked about what shocked him the most when he moved to Minnesota the first time, which was snow (before global warming kicked in, the state used to get dumped on so that sometimes the snow would be thigh high) and teenage pregnancy (in his culture, girls would live with their parents until they were married and they never spent time with boys until the marriage happened). We talked about how violent men are towards women in the States, and how women are so accommodating and undemanding of the men, as in, “It’s okay if you don’t work. Here, lemme make you a sandwich and buy you a house.” See? Lots of sharing.

In my appointment, I first talked the physician’s assistant through everything and demonstrated how my symptoms disappear when I tilt my head parallel to the floor. He asked if I had seen the one doctor I had asked to see, and I said I hadn’t. He asked why, and I said, “Because he said there wasn’t anything wrong with me.” The PA couldn’t hide his bafflement. He said it was obvious that my ventricles were completely gone. He did a few of the standard neurological tests like having me squeeze my eyes shut, follow his finger with my eyes, push and pull his arms, etc. Then he went to get the neurosurgeon.

The neurosurgeon came in and after our introductions, he said he had talked to my neurologist. He mentioned that they thought I was overdraining, and I shot that down immediately. I told him that my lumbar puncture came out with a high opening pressure and I hadn’t had anything surgically done since then. I also told him that I had a leak for an entire year so I know the difference between overdraining and underdraining and they are completely different sensations. For me, the underdraining always brings vertigo, fatigue and the facial droop. Overdraining will never bring paralysis for me; instead, I get the tire-iron-beating-me-in-the-skull pain. 

We talked about the fact that there hasn’t been new shunt materials in ages. We talked about the near-impossible task of finding materials that I won’t be allergic to since I’ve had so many already and I’ve reacted to them.

We also talked about the mass that’s growing on my right side. I asked him if it was at least possible to take that out. I’ve been having pain on the right side that radiates down my neck, and if it’s killing brain tissue and turning it to jelly (which it is according to the MRI), then I’d like to get rid of it. However, because of where it is – in my cerebellum – it’s in a bad spot for a craniotomy. As of November it had grown to about the size of a quarter (not sure what size it is now). 

The neurosurgeon doesn’t want to operate on me at this point. He wants to repeat the upright MRI in about six months to check the size of the mass. He expects it to interfere with my coordination; it might be what’s causing my legs to jerk uncontrollably right now.

So, that’s the plan. Follow up in six months. No surgery right now. Wait for the mass/tumor to get bigger and my symptoms to get worse.

Luckily the same cab driver drove me back – he stayed nearby so it wouldn’t be a long wait for me, thank goodness. The office was really way out in the middle of nowhere by city standards. But the ride back was completely different. Isaac was trying to get me to talk, but I couldn’t. I was overwhelmed and upset, and trying (but failing) not to cry in front of this total stranger. It was just a few sniffles, not an ugly cry, thank goodness. 

That evening I got home and received a notice that my primary care doctor is leaving the practice (and maybe even the state). During our last visit in March she had tried to talk to me about palliative care, but said she would wait for me to decide.

Just so I don’t lose my mind, I have to stop pursuing another opinion on the neurosurgery side for the time being. I’m getting a lot of well-meaning advice about how I should just “stay strong” and “keep going” and “don’t give up.” Honestly, though, I’ve been going at this for nearly seven years. This isn’t fibromyalgia, which I’ve had for 20 years – and I’m not knocking anyone who has it, it’s a beast; and this isn’t Hashimoto’s, which I’ve had for 12 years and again I’m not trying to put anyone down, but this is a whole new level of sick. I was able to work through that shit, even if I had to sleep after work and sleep through weekends. My brain is literally being crushed and I have a mass that’s growing in my cerebellum. There aren’t good days and bad days. I need a break from having to be my own advocate for this really rare orphan disease as I drag my sick ass around from neurosurgeon to neurosurgeon to try to convince them that what they are seeing is real (because it’s right there on the MRI).  

In the meantime, I have plenty of other things to keep me busy and other doctors to visit. We just won’t be tapping into my skull right now.