Co-Dependency: I’ll Scratch Your Back If You’ll Scratch Mine

Co-dependent: I’m quick to use the term. It’s not so easy to define, though. I’ve been trying for better than a decade to find just the right words. It seems most psychology publications are in the same boat as me.

PsychCentral defines it as “a person belonging to a dysfunctional, one-sided relationship where one person relies on the other for meeting nearly all of their emotional and self-esteem needs. It also describes a relationship that enables another person to maintain their irresponsible, addictive, or underachieving behavior.” So really, they provided two definitions, not just one.

GoodTherapy.org breaks it down with a good ol’ list (because we love bullets) and explains that the “old” way of thinking was that everyone’s feelings were centered on one person’s addictive behaviors. Now co-dependence is recognized in much broader terms to include the role of caregiving, denial of personal problems, low self-esteem, feelings of guilt when offered help or attention from others, sensitivity to criticism, perfectionism and fear of failure, a projection of competence and a need to control others.

But the definition from GoodTherapy.org doesn’t make clear that there has to be at least two people in the relationship to make it co-dependent. At least one of the parties has to have low self-esteem and be sensitive to criticism and project a false sense of competence, and have support and attention from another party to continue carrying on with those behaviors. And let’s be clear, here: both or all parties can be co-dependent upon each other. Mothers and daughters, friends, teachers and students, lovers. Of course, some relationships are much more intimate and lasting than others.

Here is a comprehensive list from CoDA.org (Co-Dependents Anonymous.org):

Patterns and Characteristics of Co-Dependence; Co-dependents often:
• have difficulty identifying what they are feeling.
• minimize, alter, or deny how they truly feel.
• perceive themselves as completely unselfish and dedicated to the well-being of others.
• lack empathy for the feelings and needs of others.
• label others with their negative traits.
• think they can take care of themselves without any help from others.
• mask pain in various ways such as anger, humor, or isolation.
• express negativity or aggression in indirect and passive ways.
• do not recognize the unavailability of those people to whom they are attracted.

Low self-esteem patterns; Co-dependents often:
• are extremely loyal, remaining in harmful situations too long.
• compromise their own values and integrity to avoid rejection or anger.
• put aside their own interests in order to do what others want.
• are hypervigilant regarding the feelings of others and take on those feelings.
• are afraid to express their beliefs, opinions, and feelings when they differ from those of others.
• accept sexual attention when they want love.
• make decisions without regard to the consequences.
• give up their truth to gain the approval of others or to avoid change.

Control patterns; Co-dependents often:
• believe people are incapable of taking care of themselves.
• attempt to convince others what to think, do, or feel.
• freely offer advice and direction without being asked.
• become resentful when others decline their help or reject their advice.
• lavish gifts and favors on those they want to influence.
• use sexual attention to gain approval and acceptance.
• have to feel needed in order to have a relationship with others.
• demand that their needs be met by others.
• use charm and charisma to convince others of their capacity to be caring and compassionate.
• use blame and shame to exploit others emotionally.
• refuse to cooperate, compromise, or negotiate.
• adopt an attitude of indifference, helplessness, authority, or rage to manipulate outcomes.
• use recovery jargon in an attempt to control the behavior of others.
• pretend to agree with others to get what they want.

Avoidance patterns; Co-dependents often:
• act in ways that invite others to reject, shame, or express anger toward them.
• judge harshly what others think, say, or do.
• avoid emotional, physical, or sexual intimacy as a way to maintain distance.
• allow addictions to people, places, and things to distract them from achieving intimacy in relationships.
• use indirect or evasive communication to avoid conflict or confrontation.
• diminish their capacity to have healthy relationships by declining to use the tools of recovery.
• suppress their feelings or needs to avoid feeling vulnerable.
• pull people toward them, but when others get close, push them away.
• refuse to give up their self-will to avoid surrendering to a power greater than themselves.
• believe displays of emotion are a sign of weakness.
• withhold expressions of appreciation.

As I revisit the definitions, I evaluate first my own behavior, but also a few specific relationships near me (that I have to be careful not to become too invested in, though I tend to become protective and outraged when I spot misbehavior). I think that the actual name “co-dependency” will be adjusted within the next 5-10 years, though what it will morph into will be a great mystery.

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Exhaling

April 10, 2015, was the last day I commuted home from a paying job. It was the last day I was on a dreaded conference call with a bunch of frustrated staff members. It was a Friday, and only three weeks into a contracting job after being laid off from a place where I had worked for over twelve years. I was already nervous about surviving because work had been interrupted by so many shunt surgeries prior to that time, but April 10th was the final straw.

I remember driving home during rush hour and having the familiar “lights out” sensation cloud my vision. I was only working about 8 miles from home, but since it was rush hour, it would take at least 45 minutes, and the darkness squeezed in almost right after I got behind the wheel. It took all my energy to focus on my lane and not crash into anyone else. I don’t even remember how I made it to the hospital after that, which was another 7 miles in the opposite direction. But I remember having to call my boss the next day to tell him that I would never be coming back in; they wouldn’t hold a short contract position indefinitely.

I wasn’t even sure my neurosurgeon would do surgery #10 in less than 4 years at that point. He had already said after #9 back in November that if I failed again, he was not willing to operate. But he did – sort of. He only did half of the surgery. And of course it failed. And then he sent me away, telling me I had to figure out what was the source of the problem, because he wasn’t going to continue doing something that was going to keep failing. It was all being put on me.

I did figure it out. It took me from 2010 to 2017 and 65 doctors to put all of the pieces together, not to mention the fact that I am one person, not even an entire lab or radiology department. I got zero support from the NIH’s Undiagnosed Diseases Network. The Minnesota Board of Health decided not to discipline 3 doctors (among many) who falsified information to get out of treating me. The Mayo Clinic banned me so I wouldn’t hurt their success statistics and change their #1 in the nation status in 21+ areas.

I lost everything: my car, my house, my ability to earn a livable wage, my confidence, my sense of security and self-worth, friendships, independence, and every last penny of my financial reserves. Thank goodness I already lost my hair over 15 years ago because if I had to go through that right now I’d absolutely lose my shit.

After filing three years ago, I finally had my disability hearing on Wednesday the 28th of March. I didn’t know what to expect. My attorney pulled me into a small conference room prior to the hearing and prepped me, telling me that if the judge asked me questions, to not take longer than 15-20 seconds to answer, and to speak up because he was older and may be hard of hearing. I was also told it may go as long as an hour.

But five minutes, and we were done. Long enough to read my name, and say that it was obvious I was disabled and not making anything up. The letters I asked Dr. Afrin and my current immunologist write for me were key for my case and noted in the judgment. The judge also specifically said that the way I was treated by the majority of the 65 doctors was appalling.

What’s next? I have to wait for Social Security to process the judge’s ruling, and then enter my info for payment, and like the Kool-Aid man, all you’ll see is my silhouette – I’m busting outta here. I gave Minnesota a fair shake for three years, but the fact that so many doctors lied in my medical records and refused to treat me has made my decision an easy one. I’ve decided to head back to Arizona where I will pick up again with 8 of the doctors I previously had; only a few will be switched out, including getting in with a neurologist who specializes in MCAS and Ehlers-Danlos. (Minnesota is a great place to be employed as a nurse, because they are paid relatively well, but it’s a horrible place to be a patient, and I’m far from being the only person who feels this way.)

I want to be clear about what this disability status means for me: 1) It doesn’t change any day-to-day abilities that I have. I still have to lay down and rest for the majority of my day, about 20 hours every day. 2) The actual status of disability is not permanent; I’ll be reviewed and my medical records will be combed through every few years by Social Security to make sure my health and abilities haven’t changed. 3) I still have to take the short bus everywhere, especially now since I’ll be making “too much” to get medical assistance (which is more than $0.00). 4) I still can’t get a motorized scooter – do you really want a half-blind person driving one of those??

My prediction is that this is all going to go down by the end of May, but I’m at the mercy of Social Security.

Super Blood Moon Drawing Blood

In 1993 to 1995, I worked at a regional hospital in the admissions area, and we always knew when it was a full moon. On any given day we would have one or two women during regular business hours coming in (not through the ER unless it was after hours) in full labor. When the full moon hit, the number always jumped up to about nine. If we ever forgot or wondered for a second, we checked the calendar and then it would click: oh yeah, the full moon. Every time. Don’t ever doubt that the moon has a big influence on happenings on Earth, and it’s not just tides and births.

I was at a social gathering this Tuesday the 30th of January. There were only six of us, but I only knew two others and three were strangers. One person came from her workplace and was wearing her work uniform and I was familiar with the clinic where she works – it’s quite large, and I used to have the majority of my doctors there. One of the young women sitting next to me piped up and said, “Oh, I used to work there, in ophthalmology!”

I immediately tensed up. “Do you mean you used to work with Dr. X?”

“Yes! I loved working with him, he was so laid back,” she said.

Now I’m no good when it comes to putting out a poker face. I also didn’t feel like playing Minnesota nice either. I said, “He made my life a living hell. He was the first doctor I saw there, and he said that my condition was psychogenic [meaning it is psychosomatic], and all of the doctors after that saw what he wrote so they wrote the same thing in my chart, and now no one will treat me. I actually have scans showing that my brain has collapsed and I’ve had a clogged shunt for almost three years.”

She nodded and said cheerfully, “Well, yeah, he actually writes that it’s psychosomatic or psychogenic in almost everyone’s file. But he’s nice to work for as a boss, he doesn’t get crabby often.”

When I say she was young, I mean early to mid-20’s. She wasn’t affected at all by me telling her that his notes basically ruined my life and chances for getting treated properly. I also haven’t had any money (including and especially disability) coming in for three years. I also wasn’t successful in filing a complaint with the Minnesota Board of Health – they said I didn’t have sufficient evidence. But now I’m wondering if I’m the only one who has complained about what he put in my chart because it was so obviously wrong, and I backed it up with 100+ pages of medical records.

This Dr. X is Harvard-educated, but you know, even Harvard has to have someone who is the shittiest out of the bunch. I’m going to go out on a limb and say he’s the one.

This is also why it’s important to stay diligent about your own care. I realize that anger makes people uncomfortable, but in my case, it’s legitimate. 

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

When I returned home from this gathering, I was taking my nighttime meds and catching up with my emails, and I saw one pop up in my inbox. I dreaded opening it. It was from a researcher I had written to a week ago to give her an update on my situation. I had met her in 2016 at the hydrocephalus conference that just happened to be in Minneapolis. I wasn’t sure that I could handle more disappointment, but after delaying it for a bit, I braced myself and checked her reply.

I had explained that I was diagnosed with mast cell activation syndrome, and that my Phoenix neurosurgeon had noted that my dura was extra tough when he started doing surgeries in my head rather than my back, so my theory was that my CSF couldn’t drain properly and that it was probably because of the mast cell degranulation. I already know the shunt failures are because of the mast cell action.

Her reply was very encouraging. She thought that I was absolutely on the right track, and she wants to work me into her research. A lot of it already revolves around inflammation; I consistently have astronomical platelet counts (that have already been checked via a bone marrow biopsy), but she hasn’t studied mast cells and I would be the perfect candidate since I had problems before the shunts and with the shunts.

I tend to be a pragmatic person, which sometimes leads to awkwardness in emotional situations. But I’m more than happy to sacrifice my body at the altar of science if it means that some knowledge is gained and others are helped. I’ve become a broken record in the online MCAS groups because I’ve talked about the CSF and shunt issues so many times, but every time I do, more people step forward and say that they have had some mysterious problems too, even if they are not exactly like mine. For a long time doctors have said that only fat, middle-aged women have pseudotumor cerebri/ideopathic intracranial hypertension, but I’m beginning to suspect that mast cell activation syndrome might be playing a bigger part than they realize because of how many people in the groups have stepped forward. 

So after this low low and this high high, the super blue blood moon arrived in the early morning hours Wednesday. The moon has ruled my Earth. I feel a little bit lighter now.

And Then There Were Three

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

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

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

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

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

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

So……..

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

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

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

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

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

Save The Date

Statistically, Minnesota is one of the worst or the worst state in the U.S. when it comes to wait times for disability processing. I didn’t know this when I relocated from Arizona to Minnesota to try to figure out what was going on with my body. This article from the Minneapolis Star Tribune states the average wait time is around 570 days from filing to have a judicial review. I just got confirmation that my hearing is set for March 28th, which will put me at about 770 days of filing the appeal (and almost 3 years to the day of filing the initial claim of disability). The back log just keeps getting worse.

I’m not sure I would have done this any other way. As horrible as it has been with trying to get doctors to take care of me in Minnesota, I did finally get three diagnoses that I have been missing for years in addition to what I already knew. I forget what my count was when I entered the state, but I’ve seen 64 doctors since July of 2010. This has not been an easy process. There is no clear path.

Thankfully my allergist has already agreed to fill out paperwork for my hearing, and my counselor has as well. I will be meeting with my primary care doctor and pain doctor next month to ask the same from them. I’ve been rejected by every neurologist and neurosurgeon in the area as well as banned in writing by the Mayo, and I can’t go out of state because I’m on Medicaid so it’s not allowed, so I’m not quite sure how that is going to be looked upon by the judge. There’s absolutely nothing I can do about that.

One incredible resource I wish I had stumbled upon before I started this process but am eternally grateful for is the blog How To Get On. There are sooooooooo many links/ideas/resources/testimonials that it sometimes boggles my mind, and I really can’t imagine how many man hours it took her to put it together. It’s unfortunate that the author sometimes gets reported and blocked by Facebook for either posting “too much” (seriously??) or for questionable posts (again – say what??), so we have to keep it circulating so as many people as possible benefit from its content.

A Slap And A Poke

It’s crazy being me. I say this so many times. I had mentioned the rare disease in my regular every other Tuesday get-together (most everyone has heard about it at some point), and a new guy had it in his head that he was going to school me on how he was going to cure me with diet and a holistic doc. He had the usual probiotic and chelation recommendations but also insisted I should eat sauerkraut. He couldn’t believe that said sauerkraut would instantly release histamines and give me hives. He also couldn’t believe that the Mayo would turn me down. I told him that I don’t ask for advice because I am always 1-7 years ahead of anything anyone can ever tell me, and I’ve never met anyone with my particular neurological symptoms with the mast cell disease.

<sigh>

On Monday, I was supposed to get a high volume lumbar puncture. That was the way it was ordered. This meant that the opening pressure was supposed to be read AND fluid was supposed to be taken off. When I was in the fluoroscopy room, I asked the radiologists and staff if they could carefully document everything before and after because my symptoms would change. They then offered to have a physical therapist evaluate me. I said great, yes, no one has ever offered that to me so I didn’t know it was an option. So they called the doctor to see if he would change the order.

However, when they got the doc on the phone, he changed the order and said forget it, only get the pressure reading and don’t take any fluid off at all. I was floored. First he wanted at least four vials (which is a lot), and then he wanted nothing?? I said that even if the opening pressure was normal, if they took some off, they would still see an improvement in my symptoms for a few hours. The doc said no way. Do not take any fluid off.

The radiologist hung up with him. He told me that he couldn’t go against this new directive and I had two choices: go ahead and get the pressure reading only, or stop everything and come back some other time. But here’s the thing: I only got this lumbar puncture because I called this neurosurgeon that I saw two years ago and begged for it, because I haven’t had my pressure checked since then. My current neurologist has been telling me I’m overdraining (even though no one has checked me) and I’ve been saying that the pressure in my head is high when I’m upright, and I felt like getting this check would help settle the fight. But the neurosurgeon wouldn’t agree to see me in the office. This was all I was going to get. So I went ahead.

I don’t metabolize Lidocain properly, so even though the radiologist juiced me up liberally, it wasn’t enough. It was also tough for him to penetrate my dura – possibly because of the sclerosing issue caused by my high histamine levels. After all of that pain my opening pressure came up as a boring normal level. Nothing to see here, folks. Except it completely rules out what my neurologist is saying about my shunt overdraining. My guess about why it’s not giving me a high reading is that the pressure lowers when I’m flat. There’s only been a couple of times when I’ve had high readings and I’ve been flat.

On Monday night, I ate some homemade spaghetti sauce and woke up the next morning to find that my entire mouth had swelled up, and the lining had sloughed off. I also had sores all over the inside. So tomatoes are now a big no-no. That’s a bummer because I make killer chili and lasagna.

Also kind of new in the past few weeks is another diagnosis. I’ve been struggling with this for at least the last 7 years as well. Doctors were telling me that I must be doing something wrong, blah blah blah. It’s super painful. I have hidradenitis suppurativa. I’ve had it come up in two different areas not close to each other and had to have “surgical intervention,” which makes it officially grade II. I’ll be seeing a new doctor Monday to talk about injections; it’s controlled by a medication that is similar to Imuran, which I was on in the past. The crazy thing is, I saw a very extreme case of it a month prior on a British show on Netflix called “Embarrassing Bodies” but had no idea that it was the same as what I had brewing. (Let me tell you, if you are fascinated by all things medical, that’s a good one to watch.)

Send Up The Flares

It has been a really long time since I’ve logged into my FetLife profile. I didn’t realize it, but I had three messages waiting for me – one from about two months ago, another from four months ago, and the third from a full year prior. The one from a year ago I let slide. I mean, I did put in my profile that I don’t log on and that I’m going through a health crisis, and I can’t “play” in any way, shape or form. I did make a small adjustment to my profile, which alerted my friends and RELEASED THE KRACKEN.

One former spank party friend wished me well and told me that he had heard I moved to California. I replied that that wasn’t the case, I’m actually in Minnesota, taking care of some serious stuff. Then the guy who sent me a message four months ago hit me up again, this time with his instant message name and phone number. I replied that I was not looking to do ANYTHING, but that didn’t deter him; he said he would be willing to “give me a massage if I needed it.” Um, right, do bedridden women usually fall for that?

Then another guy whom I’ve played with at spank parties in Arizona hit me up to let me know he was actually currently in my city for work, and was I interested in getting together for a session? I groaned. This guy…he’s very, very, VERY focused on his kink. I like to have fun. It’s not the be-all, end-all thing for me. He carries a backpack with all of his tools. He actually has two pictures of me (not showing my face, only my red ass) on his profile. He’s totally into role playing, having me stand in the corner, punishment, the whole bit.

So I turned him down, because there is no fucking way I can do anything, including hang upside down, or put my stomach over his knees. The thought makes me cringe. I would be walking like a cat just getting out of anesthesia. And it would be painful, and not in a good way. So he asked me if I could be his chat buddy while he’s traveling for work: talk to him about discipline, spanking, corner time, paddling, etc. I’m rolling this around in my head, and first of all, this requires research. And time. And creativity. Probably some motherfucking Skype. A hairbrush (because wouldn’t you know it, I’m bald). It’s all I can do to peel myself out of bed to make food for dinner every day, and this guy wants me to put a lot of effort into keeping him happy and satisfied.

It takes a lot of effort to turn him down and I know I’m going to have to repeat myself. It’s not my first time. And there it is: “I’m traveling a lot and I don’t get the opportunity to do what I need to do.” So I have to drive it home for him: I’ve got serious stuff going on, I’ve got scar tissue in my brain and I have to lay flat 20-22 hours every day, I’m in pain, I can’t get another operation right now. His reply: “Okay, just know that you’re missed.” BTW, he has a wife and two little children at home. She knows about his kink and his attendance at the spank parties; I don’t know what else she knows because the travel job is news to me – but then again, we were never close.

This is also not the first time I’ve had to turn him down since I started having shunt failures. His kink always comes first. It’s fucking exhausting, man. But if y’all are interested in a pen pal, hit me up.

In other news, for about three weeks I’ve been dealing with persistent hives on a daily basis. I wasn’t quite sure what to do because of losing my rare disease doctor. However, I received a message from him this morning indicating that he put a script through to the compounding pharmacy for me that will (hopefully) help with my hives as a sort of last hurrah while I try to find another doctor. I also got the names of two doctors in the area who would be willing to communicate with him. The problem is that one is old as dirt and so probably won’t be practicing much longer, and the other one isn’t much younger and has a bad reputation for being a raging bitch. I need to sacrifice a chicken and do a dance around a fire or something.

Also today, I received a call back from the neurosurgeon’s office whom I originally saw two years ago when I relocated here from Phoenix. I called him as a last-ditch effort to try to be seen by him or someone else in the practice and get away from my current neurologist. She has been telling me that I don’t understand my symptoms – kind of along the same lines of telling me that even though I stubbed my toe, it’s really my nose that is hurting, ridiculous like that. So this neurosurgeon was kind enough to order a repeat lumbar puncture, which I’ve been begging for since December 2016. The lumbar puncture he ordered is “high volume,” meaning they will take at least four vials of cerebrospinal fluid. They will measure the opening pressure (like you would when you check the pressure on your vehicle’s tires) and then they will send the vials of fluid for testing of the proteins and check for bacteria. Getting this done will also relieve my symptoms for a few hours. He also agreed with me on my choice of neurologists within his group. 

My current neurologist’s justification for not ordering a current LP is this: Usually slit ventricles means that you are overdraining. I pointed out to her that my shunt failed 17 days after surgery in 2015 so I’ve got high pressure, and she witnessed my shunt opening up for about 30 seconds during my last appointment, and my paralysis went away, then came back. Then we read scientific journal articles together about adults with slit ventricles and shunt failures and symptoms. Then she said it only happened to some adults. I asked her why I couldn’t be included in that “some.” She told me it didn’t count because I wasn’t throwing up, I was only nauseated.

Fuck that. Spinal tap, here I come. 

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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.

immunizeLABS Has You Covered

Whenever I venture out in public, I try not to think about all of the surfaces that other people have touched, and what they have touched before they touched those surfaces. But I have to. My immune system severely lacks IgG3 and IgG4, which means I can’t fight off microbes like normal people can, and I’m blessed (should I say blessed?) with fibromyalgia and irritable bowel syndrome, which make me more vulnerable to illnesses and tougher to recover. The most recent confirmation that I was born with mast cell activation disease doomed me to vulnerability. I know what I have, I just gotta find a way to fight stuff off. Besides being diligent about washing my hands and not touching my face, what are my options?

I was contacted by immunizeLABS to try five products in the thick of flu season. I have been given these products as part of a product review through the Chronic Illness Bloggers network. Although the products were a gift, all opinions in this review remain my own and I was in no way influenced by the company.

First I’ll cover three supplements: Boost, Shield and PainRelief.
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Immediate basic impressions were that I was thrilled that these were room-temperature stable and that I didn’t have to store them in the fridge. I have so much more success with taking things on a regular basis when I have them sitting in front of me than I do when they are tucked away in a fridge. Also, you’ll notice that the contents are sold in dark blue bottles; most companies will do this when the contents are photo-sensitive and the ingredients degrade when exposed to light.

The most important thing about all of these products (including the items that follow after these three) is that they all contain colloidal silver. Colloidal silver is known to be anti-microbial. In fact, I purchased a quick-drying travel towel that is woven with silver threads because it is specifically anti-microbial. If you have done any kind of studying on your conditions (if they overlap with mine), you know that microbes tend to be our enemy and overtake our systems and are hard to get rid of.

immunizeLABS formulated each of their products to have a specific outcome. For instance, each one does contain different values of the colloidal silver, as well as ginger, cinnamon bark oil and medium chain triglycerides, but then the PainRelief contains curcumin, which has been used for centuries as an anti-inflammatory. You wouldn’t want to leave home without Shield, which included in its ingredients is the all-important vitamin C in a super dose, but there’s also other supportive items that you don’t have in your medicine cabinet. Add Boost to your routine, which includes glutathione, which is a supplement that assists with repairing and building tissues, making chemicals and proteins, and generally “boosting” the immune system. (Their complete ingredient lists are available on their website: immunizeLABS)

The products state to start with 1 teaspoon of product in 2-4 ounces of filtered water in the morning at a minimum of 20 minutes before you eat, gradually working up to 2 tablespoons of product in water over a week’s time. Here are pictures of what each look like before they are mixed in water (left to right: Shield, PainRelief, Boost):

The product labels say the flavors are “chocolate.” This is the only problem I had with the products. I know that these contain all kinds of things that are good for me, but I could never get past the flavor. My dad and uncle owned a hair salon for decades and they taste like what they use for hair coloring. I’m sorry. They just do. So what do you do? You mix it fast and you chug it fast.

So in the thick of flu season, I can say that I have successfully avoided getting taken down by any nasty bugs, despite being out often in public. I’m not sure if my inflammation has been systemically reduced, but not getting sick is huge for me. I did feel more clear-headed – brain fog is a real challenge – and my digestive tract acted like it was on an actual schedule rather than all wacky. I could also tell that my pulse was not jumping around after ingesting the cocktails. When it does, it’s an indication to me that my blood sugars are spiking or I’ve had something I’m allergic to. I will consider this an overall win. 

One of their other products may have helped to protect me, and that is their Breathe Easy Nasal Spray:
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I’m not a sufferer of migraines so I can’t give an opinion from that perspective. However, I often suddenly develop congestion – and I’m not sure if it’s because I’m experiencing a mast cell trigger, or if there’s pressure building up in my cranium from the cerebrospinal fluid building up. The Breathe Easy spray is a mixture of the colloidal silver plus sea salt, certain essential oils, as well as horseradish and cayenne pepper (say what??). I’ve been giving it a couple of pumps before I go to bed as well as when I feel stuffy, or when I come in from being out in public, and again, I haven’t gotten sick and the stuffiness goes away. I also consider this to be a “win.” In fact, you can use this one as often as you feel the need, so I think I’m going to do that right now.

I’m saving my favorite for last, and that’s the OralMiracle.
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I have all kinds of challenges with my mast cell activation disease, including my mouth burning and suddenly developing allergies and sensitivities where I didn’t previously have any. Even commercial brands that are on the market that boast to be alcohol-free still make my mouth burn. I also want to have white teeth just as much as the next person – why should I have to sacrifice that just because I react to strong chemicals? Again, this product contains the colloidal silver to control microbes; imagine how much of a boost it gives your mouth to have that anti-microbial assistance when you’re trying to prevent tooth decay.

The recommendation on OralMiracle is to swish 2 teaspoons for 3 minutes; “The longer you swish, the deeper the healing.” The taste is pleasant and most importantly, my mouth doesn’t burn. They strongly recommend that you don’t eat or drink for the rest of the evening so the product isn’t washed away. My budget is really, really limited right now, but this is the one item that I would spend money on again and again.

Please visit immunizeLABS for their entire line of products as well as their ingredients to make sure that they will be safe for you to use.