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.

MedCline For Heartburn – A Crazy, Functional Pillow System

Do you suffer from heartburn or GERD? I have, for years. I’ve gone through a number of tests to find the cause of it and also to make sure that the valve between my stomach and esophagus isn’t degrading from the acid backing up (it isn’t). It is the absolute worst feeling to wake up because acid comes up all the way from my stomach into my mouth at night. I’ve also tried a combination of medications, but sometimes they don’t do the trick, and it’s not always safe to be on them long-term. Now I know my acid reflux is likely caused by my mast cell activation syndrome. 

So I saw an ad for this pillow system and decided to give it a try. It was especially appealing to me because I had surgeries done on the right side of my body for three years and had to lay on my left, and had torn up my left shoulder terribly – I’m still doing physical therapy, getting injections and dealing with regular pain continuously now. The base inclined pillow looked like it would help me a lot because it actually has space tunneled out for the shoulder and arm:

What you see propped on top of the wedge is the body pillow that is also available with the system. You can buy the wedge by itself, but honestly, I don’t recommend it; I’ve tried to sleep without it, and it’s not at all comfortable to me. Here’s a pic that shows more of the body pillow, which is filled with memory foam bits:
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To sleep, I first tunnel my arm through the wedge, and then I wrap my body around the body pillow for support. MedCline recommends that it’s best to sleep on your left if you are able because of the shape and functionality of the stomach, but it’s okay if you aren’t.

MedCline recommends that you buy your pillow according to your height and weight. If you meet one requirement but not the other, I would say go with the height and not the weight, because where the wedge inclines makes more of a difference for you than anything else.

The pillow system is shipped for free and they have a 60-day money back guarantee. MedCline wants you to give the pillow system a try because they know it will take some getting used to, but they believe their product is worth the time and effort. I believe it too. I showed my pictures to my gastroenterologist because he had never seen or heard of it before, and he knows countless patients who sleep in recliners or who purchase traditional wedge pillows or try to sleep on stacks of whatever will keep them propped up at night.

I agree with MedCline – it does take time to get used to. When I sleep on it, I don’t have problems with my shoulder or arm hurting or going numb, and I don’t have problems with my acid reflux. That was my ultimate goal when I bought it.

Failure Or Fun? You Choose

I get a lot of flak for my dating life. Well-meaning friends and family have tried to keep up with the names of the men I’m dating, and I tell them not to bother, because they won’t be around long. I also deliberately avoid family photos. It means that I’m often the butt of many jokes, which admittedly sting from time to time. But my refusal to settle means that I continue to avoid divorce, too. I always end up with good stories.

Here’s the perfect museum for me, and people like me: The Museum of Failure. Of course this has to do with the world’s worst innovations and not relationships, but these are gloriously bad. That shocking facial mask?? OUCH. I had my face tased for a test, it’s not pleasant. I would not buy a device and do it willingly on a regular basis. What the what…?

And the Colgate lasagna…well, this year there was an ad for toothpaste that tastes just like a Burger King Whopper, but that was an April Fool’s joke. Trust me, you do not want this unless you are going to be single forever. And not talk to anyone. Ever. And not get laid. EVER. No.

If you haven’t had the pleasure yet, one of the items included in the Museum of Failure is the Bic for Her pens. It’s not because the pen itself is dysfunctional. Bitch, please – why the fuck would you market a pen as only “for her”? Talk about trolling, Amazon couldn’t keep up with erasing the “reviews” fast enough, so there’s a ton of material out there that you can search for, but here’s a taste.

Speed Dating a la Cab Ride

When I first moved back to Minnesota in the summer of 2015, I had some leeway in being able to be upright before I started to get paralysis in my face. I could be without my cane and go incognito for about an hour before it became obvious that there was something not quite right with me (besides being “weird” as some of my friends declared my personality). But as I’ve gone on without being able to get any assistance from doctors and the pressure in my cranium has increased, I haven’t been able to leave without my cane, and the left side of my face becomes immobilized much quicker now. I become invisible to the majority of the opposite sex. I don’t dress any differently, I still put on my yummy perfume oils that smell like sex and chocolate and I still do up my makeup just right. But my cane and the left side of my face are my instant cloak of invisibility.

The exception is middle-aged Somalian cab drivers. 

First, they find out if I’ve had children. I tell them I’ve had a hysterectomy, so I can’t have children. They tsk-tsk their tongues and then say, “That’s too bad. No kids? Maybe some day. That’s okay.”
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Then they ask me what I like to do for fun. I explain that I don’t go out much because I have to lay down a lot because of my health problems. They make the tsk-tsk sound again. “You have to get out more.”
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Sometimes they will ask me if I believe in “God.” I tell them I don’t believe in religion and I will not be with someone who pushes their beliefs on me. Some will tell me I need to pray about it; some will tell me they respect that and I don’t have to believe what they believe (but I’m a pretty suspicious sort of person and I always think men will say anything to get in my knickers). 
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Then they get to the point where they ask if I would like their number. They tell me that everyone wants someone to be close to – which is true. Some try to sell me on the point that in the Somalian culture, everything is provided for the women. (This is not at all appealing to me – good thing my face is paralyzed to keep things polite! I don’t want to be thrown out of the cab.)
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Sometimes I have to refuse the offers of numbers 8 or 9 times. This last one, pictured above and most recent, was a fun sort of guy, and we talked a lot about dancing. I used to do a lot of swing and salsa dancing and miss it terribly. He told me that he goes out dancing for 4-5 hours at a time and it would be great exercise for me. When I was having a hard time getting him to take no for an answer, it was becoming a sort of unreal conversation:
Him:  You should let me take you out dancing.
Me: I can’t. I need to have brain surgery.
Him: When will that be?
Me: I really don’t know.
Him: Tsk-tsk. You should let me take you out dancing.
Me: No. I can’t even turn quickly. Dancing could kill me. (I didn’t explain the whole pressure in the cranium and stroke and aneurysm risk factor – way too complicated.)
Him: It would be fun. We should get to know each other.
Me: I really have to concentrate on my next surgery for now, but thank you.

Thankfully most of my doctor appointments are within 10-15 minutes of my apartment so the awkwardness never lasts much longer than that.

All You Need Is Your (Whole) Health Back (Movie and Book Review)

Half of the adult population around the globe has some sort of chronic condition, varying in severity. Some are lucky enough to barely be bothered by it except as a reminder on their calendars once every few years to get checked by a doctor for any notable changes. Others can’t move an eyelash without being reminded that their body has taken on a long-term burden and there’s no relief in sight. A huge majority fall somewhere in between. Because of this, and social stigmas falling away regarding the discussion of chronic conditions, the market is being flooded with all kinds of materials and “how to” manuals for coping.

Through the Chronic Illness Bloggers group, I was lucky enough to be given these two products as part of a product review through the Chronic Illness Bloggers network. Although these products were a gift, all opinions in this review remain my own and I was in no way influenced by the company.

The two items that I was given in tandem were a documentary called “The Connection,” and a book called “The Whole Health Life.” I didn’t approach either medium with any expectations, which turned out to be a good thing, because I tend to be very particular and picky – I don’t want my movies or reading materials to be too “preachy,” nor do I want them to assume that I know nothing about my diseases. Most of the time I see manuals out on the market that are written with new patients in mind, not with 20-year war veterans like me.

First, I’d like to cover “The Connection.” I’ll admit, I reached for this first because I didn’t feel like I had the attention span to get me through a book right out of the gate. I was quite pleasantly surprised. It was a good pace, but not overwhelming, while still giving the audience constant reliable information to process. For instance, I learned about “medical hexing” – many patients are told by doctors that we’re not going to get better. Would you believe it if I told you that two weeks ago, my primary care doctor told me that I should just give up and accept that I will never find a neurosurgeon who will be willing to help me with another shunt surgery and who will take my tumor out? Boy, is that ever a hex! But a hex doesn’t have to be that obvious. It can be about giving you a pill rather than looking at your whole lifestyle and looking at what can be improved upon. 

More points from the movie hit home for me, especially since I’m having such a hard time finding doctors who will help me. For instance, if I have zero support – friends, family, doctors – I’m three times more likely to die early. Luckily I have some really great family and friends. Also, belief is part of why we get better, but it takes both the doctor and the patient believing. So far, I don’t have the doctors backing me up. And I also learned from the film that our genes do play a major role in what we do develop as far as diseases go, but our life experiences and our environment also trigger the genes. In other words, you could be perfectly fine but if you go wading knee deep through an oil spill, chances are that MS is going to come leaping out that has been lurking all these years.

So if you haven’t picked up on it, the documentary “The Connection” got my attention. Because of that, I was confident that the book “The Whole Health Life” would be engaging – and it was. And that says a lot, especially coming from someone who has the attention span of a gnat at the moment.

As readers, we can spend more time on the book, relating to what the writer is saying about wading through the soup of pain and foggy brain, trying to get through an able-bodied world and looking normal on the outside. Immediately the author, Shannon Harvey, introduces the core concept: we cannot deal with health by separating “body” health and “mental” health. They are intertwined and inseparable. A pill may address one portion and meditation may address another portion and talk therapy may address yet another potion and engaging in positive social activities may be uplifting, but when consumed in isolation, they hardly make a difference. When combined, they improve a person’s well-being by leaps and bounds. Ms. Harvey breaks it down into 10 topics to easier process and incorporate the practices into daily living.

For me, meditation is difficult. As I mentioned before, my mind is more that of a squirrel than it is a turtle, but she talks about the benefits of calming the mind and recommends a few easy steps that anyone can pick up. Emotions logically follow right after that. What are we doing to process our emotions? What do we allow to play on our inner recording? And then there is the “placebo effect.” Let’s try changing the name of this, the taking of sugar pills and still seeing positive results, as if a patient has taken “real” medicine; what is really at work is the power of belief. The belief that a patient can heal and become well again (or at least have an improved life) that comes with the motion of the taking of the medicine is just as powerful as the drug itself and has been documented for hundreds of years; it’s why people “pray” when it seems all hope for recovery is lost.

Of course, on the physical side, what we put into our bodies and how we move our bodies makes a huge difference. Eating the foods that are the best for us, sleeping the right amount and exercising to the best of our abilities are all important in our recovery and maintenance.

As a “spoonie,” as those of us are known who have chronic conditions that cause fatigue and pain, many of us keep blogs, as I do, as well as participate on social media like Facebook, Twitter and Instagram. We seek out others who are like us. We appreciate having others who understand our daily (and sometimes hourly, minute-by-minute and second-by-second) struggles. I think that “The Whole Health Life” would be a good book to read and re-read because we tend to get stuck in patterns that reinforce the negative feedback loop – myself included. If someone isn’t feeling up to concentrating on words, then they can sit back and watch “The Connection” for some reinforcement.

Please visit the documentary movie “The Connection” here.

You may purchase the book “The Whole Health Life” by Shannon Harvey through Amazon here.

The Flame

There are times when I feel ageless, or when we encourage each other to be ageless, and that’s when it comes to loving. We recite that trite old saying about loving like we’ve never been hurt before and we believe it when someone pops in and we recognize, somehow, our twin flame has found us.

I realize I’m speaking in generic terms, but that’s because I’m not the only one who has been on this particular ride. You instantly know that you’ve met the person that you want to be better for, who is going to make you a better person, who isn’t going to judge you for your past number of sexual partners or your weird preference of consuming all of your food in bite-size pieces or smaller (think M&M’s or Cap’n Crunch).

And more often than not, your twin flame starts off far away. It doesn’t have to stay that way; you can choose to move closer, but it’s bound to start with a great number of miles separating the two of you.

And it doesn’t have to be a romantic relationship, but if it is, then it is, and it’s intense.

I met this person purely by chance. We didn’t have to talk, but we did, and once we started talking, we didn’t stop. We talked every day. We talked for hours. We traded text messages and talked on the phone. He was the first person and last person I talked to every day. I shared things with him, and the most things. I think it was the same for him, or at least, that was what he told me. I think he was being truthful.

We discussed the concept of the twin flame and decided that it must apply to us because of our physical and emotional/mental bond. It’s not just a soul mate.

We share some of the same personality traits. We demand perfection. We are our own worst critics, too. He and I are both intrinsically drawn to soft and tender things, and would discuss what damaged our relationships in the past, and what we hoped would happen in the future, including how we wanted to treat each other. I am an unapologetically sexual woman, and because he was my twin flame, I swore there were times when I could physically feel him – his hand on my skin, his breath on my cheek, his leg tangled up with mine. If I closed my eyes, I could see his eyes, blinking at me. There were times when he would send me a message, asking if I was okay. At the very moment I would be struggling with news from a doctor’s appointment and possibly even crying, and somehow across the miles, he would know. Sometimes I could tune into him and feel him breathing. There were so many times that this happened that we stopped saying “wow” and just rolled with it. It was just us.

After some time, he started being “busy.” His phone calls became less, his messages shorter. I was no longer his first morning message or his last goodnight. In a car full of strangers, I ended up having a text conversation with him that was meant to clear the air – and it did, for a bit, but he claimed that he truly was busy, and nothing had changed. I had asked him point blank if he thought that I was okay to fuck, but not relationship material. He gave me the impression that he was shocked that I had come to that conclusion and assured me that he did not think that I was stupid.

Still, though, I felt the ground rearrange. It was mostly in the way that he was speaking to me. I could tell that he had lost respect for me. He started to pick apart everything that I was saying. Early on, when we were getting to know each other, he had said that this was a warning sign that he was done with a relationship, and I had said that it was for me as well (and I remembered). As soon as this happens for me, there is no turning back – when the pedestal is yanked out, one can’t just jump back on. So he chose to focus on phrases I was saying by repeating them, and demanding, “What is that?? What is that all about? Why are you saying it that way?”

Our last phone conversation didn’t go well. We hadn’t spoken for a few weeks and he called out of the blue. He asked how everything was progressing for housing (I am in the process of getting into subsidized housing through the city where I live and it’s a complete nightmare), and he also asked me about my most recent doctor visits. I had let him know about being rejected by the most recent neurosurgeon. He told me that I clearly hadn’t done enough to advocate for myself. As I explained to him later, it’s really hard for me to hear that. Throughout all of this, I’m the only person who has kept me alive. I have been the singular person pushing to get help. I have joked, yelled, cried, organized, corrected, called, complained, assisted, demonstrated, all while I’m incredibly sick, just to try to get help – any help at all. Gah – even typing that sentence makes me cry. I think about all of the doctors who have mocked me to my face or have written false and sometimes horrendous stuff in my files…and it almost sounds too crazy to me. Almost.

The next time we talked, I tried to very gently ask that we not discuss my housing or my interactions with my doctors. Quite frankly, I didn’t feel up to the criticism. At first he was very defensive, but then he thanked me for asking in that manner, because he would respond positively to it.

But then the next time we talked, he asked me if I was ready for my next appointment. Then he said again that I should be doing more – that I should write a letter to the doctor, something along the lines of outlining what my symptoms are without showing any emotions, because doctors want facts but they don’t want emotions, and then he suggested I look up the doctor’s published work. I started to explain that the letter-writing campaign didn’t/doesn’t work because when the doctors get a heads-up that I’m coming, then the doctor will ask me to fax over records and then I’m fucked, so I’ve tried that route and it hasn’t worked in the past. Then I asked him to have faith in me that I know how to handle myself. He said that what I was doing wasn’t working so he was looking for solutions for me. I told him that the fact that I have seen 57 doctors didn’t have anything to do with what I was doing wrong but rather had to do with the fact that I had a scary rare disease that no one knew how to treat. I also have moved across the U.S. on my own 4 times and I get shit done, so I’m not just throwing my hands up and not doing anything. He said he didn’t say I was doing something wrong, just don’t paint myself into a corner. I asked him to explain that, but he didn’t, not fully.

The thing that really got me, and that I had a really good cry over, was his refusal to have faith in me and my ability to figure this shit out. I’m coming up on 7 years of this. He’s disgusted with me because I can’t make others do my bidding. (I invited him to physically join me. That was a big, fat NOPE.) Since that conversation, we’ve barely talked at all, except to rehash his work.

So where does that leave me? Well, I’m working on becoming a stranger. It really is difficult. Our human burdens – my depression and anxiety, his demands for perfection – win this lifetime. I know he’s left me already because I can’t tune into him. If he does send me a message, he tells me how wonderful and caring everyone else is. He no longer sees this quality in me because he has picked me apart. I already know that he has written me off as being too negative. [Show me anyone who has gone through anything remotely similar where even their primary care doctor is telling them to give up, and it would be impossible to be cheerful all of the time. 80% of the time that we were on the phone, I was upbeat.] 

Now I have to work on severing and remembering that I was probably lucky to have made it this far. Every other week I add his name in a meditation circle for healing of the soul.

And I’m sad. Sometimes I wonder if he is too.

Gender Bias: It’s Not Just for Work

Everyone is going crazy for this article that was published about a man and his subordinate who swapped names as an experiment to show gender bias in the workplace. Really, it’s not so much an article as it is a series of tweets, but you get the full picture. And REALLY really, if you’re a woman and you’ve worked outside of the home or if you’re a woman and you’ve been outside of your front door, you know how this went.

We Swapped Names and I Was So Surprised (Said Every Male)

But if you know anything about my blog or about me, I write about my experiences as a woman in the American healthcare system. Now I’m a really concerned woman as I watch a very out-of-touch bunch of Republican-led lawmakers work on dismantling the social safety nets that will help keep me housed and fed as a disabled adult with no chance of working (at least, not now, for as long as I’m allergic to the shunts they keep putting in me).

A huge barrier to my care is the fact that I’ve seen 57 doctors in 6.5 years, and a good number of them have told me to go away and not come back. My disease and symptoms scare them. They can’t diagnose me. I can tell them exactly what’s happening with my body, but they don’t believe me – they tell me it’s not possible, even when I demonstrate it and they see it with their own eyes.

I was told by someone close to me – a man – that I probably wasn’t doing something right. I wasn’t advocating enough. I wasn’t demanding enough. I wasn’t yelling enough. I wasn’t stoic enough. I was probably too emotional, or not enough, or not the right combo. I was just the wrong kind of patient and it was hurting my case.

By the time you get to 57 doctors in 6.5 years, you learn a lot of tactics: cajoling, crying, stoicism, joking, demanding, taking binders of info (so they can’t claim that they don’t have enough of your info at hand to continue).

My conclusion is that I just don’t have a penis. I wouldn’t be doubted. I wouldn’t be treated as if I’m being over-dramatic or like I can’t handle four-syllable words.

I always invite someone who has told me that I’m not doing enough to come with me. Of course that person suddenly becomes too busy to join me…but not too busy to dispense advice from his armchair.