Invading MySpace

Remember MySpace? I kept a blog up there too. In fact, I also dated some men through MySpace. The following is a story about one of those men, and knowing what I know now, he has exactly what I have: mast cell activation syndrome. I have thought about him often only because I wonder if he has actually been able to find the correct and comprehensive medical care. But hands down, he is a fucking lunatic. There is no way I could be around him for even five minutes ever again.
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I debated about posting these, but the whole incident is classically surreal, like when the main character in “Swingers” calls a girl named Nicki that he just met at a club that night.

I went out with this guy for one date in November of 2005, where we met up at a bar and he was too cheap to even buy me a drink after he asked me what I was having (the woman sitting next to me was so pissed, SHE bought me a drink).  Afterwards I drove him to his apartment because he had taken a cab, and we ended up working on some of his original music together. While we were there, he got into a screaming match over the phone with his mother, and they were calling back and forth and hanging up on each other, and he was stomping and slamming doors.  Some other background:  he own(ed) his own business that manufactures DVDs and CDs.  He also has horrendous food allergies where if he deviates from eating six specific foods he can go into anaphylaxis, much like most of us with this disease.

We talked on the phone the Monday after that date, and I timed him talking non-stop about himself for 20 minutes.  He repeatedly said that he wanted to have children, so after the sixth time of hearing that I stated that I probably wasn’t the person to do that for him and tried to explain why (this was before I had my hysterectomy). He blew up.  He went on for another 10 minutes solid and accused me of criticizing him.  I told him I was getting frustrated because he wouldn’t let me finish my sentences, then he said I was being hurtful because I was accusing him of being rude, and he was completely insulted.  Anyway, after he hung up on me, I found this string of e-mails sent overnight.  I have blanked out his name for semi-privacy and included the times for your reading pleasure (all of his typing mistakes were left in):

11:58 pm:

You know, you opened up the other night, and I was very, very, kind about it. I opened up tonight to you and you were VERY tough. Very not fair.

The items I discussed are not definite ever. But you had pre-ideas and canned my personally as to what I felt about you the other day and what you disapproved of me tonight. I had the HIGHEST FEELINGS, THEN TONIGHT YOU CAN MY FEELINGS. Hope your happy. If you want to call, go ahead. I don’t care if we are exact or not, but the words were very harsh.

12:09 am:

I am only willing to love. Email never does justice. We just hit it off, something was up the other night, just want the one I met that night. Sincerely,

3:04 am:

3:08 am:
I thought your were happy I was in to you. So there are differences, I was very insulted because you refused them last night. I can’t believe you would immediately be that way. We had a nice night the other day. You told me you had a great time. Something I’m missing?

3:20 am:
Not fair.

The decrisption of the “PERFECT” man was wrong. If that is exactyly what you want, you tell me, and tell me upfront and all! NO ONE EVER CUTS ME DOWN

I told you about the possibilitiles, and how I actually can handle the differences. But I still can handle the differences. And let my partner know.

3:23 am:
Not fair.

The decrisption of the “PERFECT” man was wrong. If that is exactyly what you want, you tell me, and tell me upfront and all! NO ONE EVER CUTS ME DOWN because I have the ability to raise a kid. Anyone who does cuts them self down. I just want to know who can.

I told you about the possibilitiles, and how I actually can handle the differences. But I still can handle the differences. And let my partner know. Kids are tough, but not 100fficial in a new relationship. But anyone who cuts me down about that…I can be the best dad.

I just only wanted to meet and go out. With no big deal.



3:50 am:

OK. here it goes. I really like talking and hanigng with you. I almost died this weekend. I’m sorry.
I lost almost 10 pounds. I;m not having fun. I am just doing what I can. It is too much too handle by myself. I really like you, you just caught me in a time where I may or maynot have much time. PLEASE FORGIVE.

3:55 am:

Please hang on. I did not mean to hang up.

It is hard to be myself with what is going on.

LOL…I’d really like a pizza! Can’t have it though.

All the things on the phone, just take them as friendly. You are great. Just know that.


4:00 am (titled “RUDE”):
yes,, me,

I really hope you call me. I am not very happy with my self. It is hard, just please forgive and talk with me again. Sincerly,


5:22 am:

I was about to Bankrutcy the business. I am not mysellf. You know, you are beautiful. I have words on the phone, and email. But they are just my venting that I might/might not loose everything I worked for. I am not my self at the moment. I apologize completely. I have a funny habbit of calling my friends in the middle of the night if I drink a bit. You caught me in a time of my life where everything is on the line.

I am totally sorry for anything I said wrong. I am really stressed. And, maybe wrong. I am sorry. I had the best time talking with you. You just met a guy who is “got it together” on the outside, but not on the inside.

I have done my best, but, I have now to realize the way it is.



PS – anything I said in a voicemail is just me venting. I hope to hear from you, venting or what.

5:32 am:

I had a rough night, obviously. But, just so you know, and whether you contact me again or not, you are very pretty. Your eyes and your smile are the best thing.

I had a really bad weekend. My food allergy thing is lethal. No one understands. My mom, well, she took about 5 phone calls to calm down and realize, and help me find a potential solution.

I am not myself. I just want to run the bus and play guitar/sing, and even sing with you.

I may have blown it. My bad. Then it is my fault and I must deal with it. I have these stupid health things that make me not myself. But if i was out of line, I apologize. Very sorry. Most Sincerely, and just not myself tonight, P

This was posted after I went to work, 9:05 am:

Hi. In summary, I went overboard last night.

When I asked you if you were real, I was meaning a real person. I have been screwed over the last few times I met someone.

You are not only real, but again, have the prettiest eyes and smile. The first thing I noticed. So, anyway, I had one too many last night, and will NOT DO THAT again. I was very emotional and you just happened to be there.

So, I really like you. And everything you said was fine. I really enjoy looking at you the way you are. And/or the way I don’t yet know, but either way, you are good with me. Your eyes and smile are fantastic.

P. has some inside issues obviously of stress, probably from the business. They come out once in a while. I just need someone to slap me in the face if they come out again. Because I do not want them around. I just want me and….well…you….at least when I’m talking with you.

So, please forgive, I am just a human. I take things too personally sometimes, but understand.

So call me please. Anything wrong I did I apologize, I just had a bad night after being very sick for three straight days. I lost 6 pounds since you saw me. That bad. I was in a lot of pain.

But anyway, I am here. Most very sincerely,


After much time and consideration, this is how I replied:
I remember trying to explain the reasons why I have decided not to bear or raise children, and during the first point (of three) I was attempting to make, you interrupted me to talk about you again.  I remember thinking “What in the world do his allergic reactions have to do with MY ability to bear and birth children???”, but I let you continue talking.  Then somehow you turned it into me criticizing you for wanting to be a daddy, when no words of criticism or judgment (and in fact no words at all) came out of my mouth.  Then you got pissed because I said I was getting frustrated about not being able to finish my sentences.  You ended the call by talking for another 10 minutes non-stop and then saying “Maybe we’ll talk again, have a nice life, talk to you soon” and proceeded to hang up on me.

To top it all off, when I wake up this morning and check my e-mails, I have ELEVEN messages from you that are barely coherent and alternatingly rude, apologetic and complementary.

If ever there was a time that you needed someone special in your life, it is now.  However:  no matter how sick you are, no matter how drunk you are and no matter how stressed you are, if you treat me like crap, I’m not going to stick around.  I don’t let anyone else treat me this way, and I’m not going to start with you.

I have a hell of a lot more to say, but let’s just leave it at agreeing not to contact each other again.


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. 

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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.

Did I Ask You?

One of my fellow rare disease/chronic illness warriors/sufferers posted a thread on Twitter tonight. She’s quite well known because her condition is very unusual and obvious, but she doesn’t shy away from the camera or public speaking engagements. Her post tonight detailed an eye doctor visit that was made all the more difficult because 1) The eye doctor googled her condition rather than talking to her directly about it – and she is a much more knowledgeable source than Google; 2) The eye doctor left the light shining in her retina while he took a personal call, after finding out that she is extremely light sensitive because of her condition. 

Her post had to do with the appalling way that she was treated. As each of us who have chronic and rare diseases either have done or would like to do, she had some choice words for the doctors following her as pointers on how NOT to treat rare disease patients. At no point did she ever say, “Gosh, I have no idea what to do. I don’t know who to talk to about this or how to go through the proper channels [in Australia] to file a complaint.” There wouldn’t be any reason for her to do that. She’s lived with this condition all of her life and she is actually a very vocal and active advocate.

But of course, there’s some asshole who decided to announce that she should file a complaint. 

No. Shit. Since the original poster wrapped up the thread by saying that she confronted the doctor and quite forcefully said that the rare disease patient is the best source, and a light sensitive patient shouldn’t be left in front of the light scope while a personal call is taken, and she would be following up with the office, and she just looked forward to trying to relax after being in a lot of pain, I responded. I said, “It’s okay – she knows how to handle bad appointments. She’s had this condition her whole life. She’s an advocate and speaks out often.” In other words, go fuck yourself.

Also recently, a young woman ended up in respiratory failure and was in a medically induced coma and on a respirator. She lost days of her life. When I say young, I mean young. Her significant other has been updating us and has been an absolute rock, but they are both scared and worried and facing big changes. Wouldn’t you know it, in the middle of the updates, I see something about, “Can you guys not offer advice, please?” She’s also a rare disease patient with some of the same stuff I have, but some is different, and I know some asshole is telling her that she needs to do yoga or chew on bark and vitamins from the Himalayas or something. So to whomever is sending her unsolicited advice, fuck you too.

Why does this get me so worked up? I was always a sick kid who grew up to be a sick adult. I became really sick in 2010 and it has been a mystery that has been mine alone to solve; no one has traveled with me to see 65 doctors, or see me through all 10 surgeries. There have been a few people who have helped to fill in some gaps, but they have been sparse. I know what I’m doing. I am educating doctors and nurses and physical therapists as I go along. I teach people how to maneuver through insurance. I help people search for doctors – even when there’s a few thousand miles between us.

I have never said I don’t know what to do, I don’t know who to call, I don’t know where to look, I don’t know where to go, I don’t know what to eat, I don’t know what to take, I don’t know what I like, I don’t know what’s best for me. And though I am currently well below my natural quota of 8 doctors, I know how to care for myself.

The next person who says, “Oh, it must be the acidity” after I tell them I can’t eat pineapple because I’m allergic to it, I’m going to throat punch them. Fuck them too. And fuck anyone who gives me unsolicited advice. I’m so over it and you have been warned. This video is much nicer about it, of course.

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.


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.

Ring Around The Rosie

I don’t know if you knew this, but the old nursery rhyme “Ring around the rosie, pocket full of posies, ashes, ashes, we all fall down!” is about the black plague.

Or, actually, it isn’t, according to Snopes.

I think about it this time of year, while I maneuver my way through hoards of people who don’t cover their mouths when they cough, or if they do, they immediately touch the door handle I was just reaching for. The Plague. Everyone is just waiting to infect me, I know it.

I’ve been having a hell of a time just getting a flu shot. Until two years ago, I never got one. Then they started making an egg-free version, meaning they didn’t grow them in an egg base as the very cheap food source. Now they also make the shot preservative free. It’s the holy grail for me since I’m allergic to raw eggs AND preservatives. However, my PCP’s office won’t order it for me. They insisted I call my insurance company, but the insurance company told me they couldn’t tell how it would be billed (as in, would there be a special code for an egg-free and preservative-free flu shot?), so I’m supposed to get the code from the doctor’s office. The PCP’s office doesn’t know how to bill for the shot unless the insurance company knows how it should be submitted, otherwise I’ll have to pay out of pocket. So…………

Scratch all that. I just talked to Walgreen’s, and they have an egg-free, preservative-free flu shot on hand, and I just have to show proof of my medical assistance. So guess who’s getting a flu shot from Walgreen’s?

This is the reason why not having preservatives is a big deal.

I’ve been giving myself Humira injections since August 30th to combat hidradenitis suppurativa outbreaks that I’ve been experiencing for about the last 8 years. It’s another autoimmune disease that up to around 2 years ago, not much was known about. I’m not going to spill all here, but trust me when I say that it’s super, SUPER painful. And doctors were cutting infections out of me, but because of mast cell activation syndrome, the lidocaine they were using wasn’t numbing me, so I would feel every slice. Before the HS was diagnosed, all of the doctors didn’t understand why I was getting the infections, and they thought that it was something that I was doing wrong – not bathing properly (HA!), wearing the wrong clothing (HA!), shaving inappropriately (because I don’t grow hair – ???? – HA!).

The treatments for HS include getting monthly injections of steroids in the normally infected areas – which I don’t know anyone who would go for that – or using oral and topical antibiotics, which I’m allergic to. The last resort is Humira.

The bitch of it is that I’m also allergic to the Humira shots. On August 30th I did the first loading dose of 4 shots. I didn’t have a reaction until 10 days after that, so it took me a while to catch on, and the reaction showed up only on my legs and not my stomach.

So I thought, okay, there was no reaction to the two shots in my abdomen. I’ll just get my abdomen with the next two shots. Besides, doing the injections in my legs hurt like a bitch. But then:
20170915_190958(Keep in mind I never show my stomach to anyone. The zipper scar you see running from my belly button is the extra large cut my neurosurgeon had to do on 12/21/13 when he didn’t have anyone assisting him on that surgery, which is the one where he finally saw my abdomen with his own eyes and remarked how it looked like a war zone inside and acknowledged my allergy to the shunt.)

So these two welts showed up the same day as the injection, and hung around until the Monday after – about 5 days. After the itching stops the welts turn into huge bruises.

I called the manufacturers of Humira to report my reaction. I knew immediately what the problem was before I even called. They make the shot shelf-stable for up to 14 days so that if you have to travel or lose power, you can still use it without it needing a refrigerator. Conclusion: preservatives. Specifically, there are 8 of them in the medication. When I talked to the company, they said the FDA approved them ONLY to make the formula with the 8 preservatives. It’s possible they might release a formula with only 2 preservatives in 2018, but they are still waiting for the final approval from the FDA. They cannot allow me to take another form of Humira with less preservatives because it’s only approved for use in the U.S. with the 8 preservatives.

I have to stay on it. If I go off of it, it immediately loses its effectiveness by 20-30% for the rest of my life within the first 2 weeks of discontinuing it.

Humira does lower my immune response. I’m already compromised because of my non-existent IgG3 and IgG4, so I have to be extra cautious. I’ve noticed that I’m much more fatigued than normal while I’m on this juice. The maid doesn’t get a whole lot done these days, know what I’m sayin’?

Usually my stomach doesn’t see the light of day unless it’s the surgeon operating on me (you can see another horizontal scar on the right pic above), but this is the reality of the mast cell disease. If you don’t know me and you see me clawing at my belly in public, now you understand why. I really do want to rip my skin off.

Two days ago I woke up for another appointment and my entire upper half was covered in hives. In this pic you can also see the shunt protruding because of all of the scar tissue that is growing around it. The rate it’s growing is highly unusual; the doctors are seeing in 3 weeks what they would normally see in 20 years. But I have no freaking idea why I woke up with the hives because nothing in my routine has changed as far as I know:
One thing that ended up on my good list is that I discovered that I’m not allergic to potato chips! Some of the other MCAS patients were discussing them in a group and so I took a chance and snuck some at a party – plain, salted – and didn’t develop hives, and didn’t lose the inside lining of my mouth or develop sores. The other crazy upside is that because I have POTS, I’m also encouraged to eat higher quantities of sodium so my blood pressure doesn’t dip too low. So, people, I am rediscovering Ruffles! I haven’t had them for decades! But they have to be strictly plain/salted, no other flavors including vinegar. It’s a nice change from the 8 foods I’ve been stuck with.

That Time I Went Back To Arizona

About five months ago, I decided fuck it, I’m going back to Arizona to visit. I miss everyone and everything. A few weeks after that, I figured out what started this whole thing with my brain. (Yes, I mean figured it out, not the doctors.) I knew I’d have a place to stay with friends, and eating out was out of the question, so I’d just have to come up with a plane ticket. Done. It might be my last opportunity to travel depending on how much worse the scar tissue and the brain damage gets – literally no one fucking knows.

I have about 35-40 people that I would have liked to have seen, but I was only there for about 8 full days, so it was impossible. One night a bunch of people came over and we had a little potluck and hung out. The rest of the time everyone was gracious enough to drive to me, or I took the short bus to see them.

It was my first time traveling without being able to drive, either at home or my destination. First of all, nothing can happen on a whim. It took me about 2.5 weeks to assemble all of my medications and a vog mask, and that included negotiating with the insurance company to get an override on 8 of my medications that would have needed refills while I was gone but couldn’t get in Arizona – they can only be done in Minnesota, because I’m on medical assistance. I also had to make a trip to a compounding pharmacy.

Then the day before I left, a medication I had been trying to get for about 7 weeks was finally approved, so I had to go and get that – but it was such a high volume that there was no way I was going to be able to fit it in my luggage, so I decided to start it after my return. Every time I have to go somewhere, I have to request a ride from Metro Mobility – but I’m only allowed to call one to four days ahead of time. I can’t call on the same day. So I was on a dead run (or as much as I could have been for someone who is half blind) up to the day I left.

It was so worth it, though. Arizona was all blue skies. As I’m writing this, we’re getting rain in Minnesota.

Hopefully my friends know I love them, but I forgot to take pictures of them. Apparently I shoved them aside and made a beeline straight for their animals, which I am deathly allergic to. I did a little planning for that too. One of my doctor visits beforehand was to get my regular and steroid inhalers refilled so I could start on those prior to my visit. I also packed extra diphenhydramine and Claritin (above the 12x daily dose I already take) in anticipation of the fur balls, and every time I came home from a house with pets I changed clothes and put the contaminated clothes into a plastic bag and did a big scrub down.

First were the rescued baby kittens, all black except for a few white spots on some bellies. My friend was just grabbing and distributing them around the bunch of us, and I just happened to get my soul mate – a little one who has neurological problems. It just wanted to get as close to me as possible so it curled up tight against my neck and slept. Once in a while I felt it have tremors and twitches that were not at all normal. I was laying back so the fluid wasn’t trapped in my cranium, and I swear, it was heaven. I wanted to stay there forever. At one point the kitten woke up and started putting its little paws right on my mouth. (I’m in the blue.) I did get hives, but they may not have been as bad as they could have been because apparently the night before the kittens pooped all over each other and so they had to have an impromptu bath, which they loudly protested.

Back at my host family’s house, a large lizard showed up on their property wall. Usually they do not get this big!
I was lucky enough to be able to spend two afternoons with my friend and his wife. He was instrumental in getting me to be active on Twitter after reading my blogs, which has led to guest spots on other blogs, podcasts, and our Blab series (now deceased because they couldn’t figure out how to make money off of the platform). These two are quite funny; the male, bright orange, is loud and LOVES women. The female, green, is a lot more quiet but likes to ring her bell ball to communicate. The male will say both of their names together and then swivel his body from side to side when he is showing off or pleased.
Next were my good friends including a couple and their live-in mom. They were usually the first ones I would call when I needed a kitty fix while I lived in Arizona – they had three kitties I knew well. Within the past year and a half they ended up adding another cat and dog under pretty terrible circumstances. Their friends relocated from another state; my friends didn’t realize there was drug addiction and abuse happening. The kids have since been placed in foster care, and the animals were traumatized. Actually, the really big, long, grey kitty seems mostly okay, but the dog has suffered terribly.

When I came to visit, I was told to expect him to pace and whimper. I was also told that I shouldn’t expect him to eat, or approach me, because anyone else who has visited hasn’t had any success even though they were animal lovers too. So this poor, beautiful dog did start pacing. I made sure that I moved slowly, and told him that he was a good boy whenever he paused to look at me. Then I put two treats on the back of the sofa and turned away from them, and eventually he worked up the nerve to get close enough to take the treats. Then he paced close enough to smell my hands while I wasn’t looking, and then quickly paced away again. While this was going on, he was carefully watching how I was interacting with each cat, making sure I wasn’t mean. A couple of times I closed my eyes. I suspect my friends thought I was tired, but I was actually sending him messages of love.

We sat down to dinner, and I couldn’t eat part of mine because of an allergy, so I put it down on a plate for the dog. Another win! And he came over multiple times to sniff my fingers. I made sure again to not be aggressive. I told him over and over he was good.

I stayed long enough to go on his last walk of the evening, which he loves. He wasn’t even confused about there being a strange lady with him on the walk until one point where he crossed over to me and then suddenly was like, “Holy shit, who is this???” and then quickly walked on the other side of the sidewalk.

At the end of the night I was saying goodnight to everyone (read: handing out the last pets to the pets), and the dog was near when I was petting the pretty calico. He was again watching very intently to see if I was being mean. So I carefully got down on all fours and made myself small, put a treat in my hand, and put my head down, and HE ATE OUT OF MY HAND. Everyone was stunned and thrilled.

My friends ran me back to where I was staying, and let me know that when they returned home, all of their animals were lined up at the door, as if they were waiting for me to return. They had never seen that happen before.

The last evening before I flew home, I was able to visit with a former co-worker whom I had the longest work history with – something like 8 years together on our team. I also remember when she had her kiddos – vividly! Our conversation went something like:
Her: “I feel like something isn’t right.”
Me: “You’re in labor. Go have your baby.”
Her: “I’m not really sure. I’m going to wait a little longer.”
Me: “I don’t think you should wait. I think you should go.”
45 minutes later: Baby.

They have two cats and a dog. I failed to catch a photo of the dog, but she was a sweetie. The white cat, Gracie, is quite elderly now, and doesn’t put up with anyone’s shit, including the dog’s. The kissy photo was taken right before Gracie got pissy about the dog bothering her. Seamus is a year-old instigator of trouble and very handsome.

Obviously the mast cell disease is preventing me from being a crazy cat/dog/bird lady, so I suppose I should be thankful.

Anyway, it was really difficult to come back to Minnesota. The night I flew home, my friend’s little boy called me and told me to come back. Sheesh, kid – right in the feels.

Invigorate Is Code For Instant Relief – Product 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 product I’m writing about today is the Invigorate pain-relieving lotion that has been formulated by the Resonant Botanicals company. They indicate that their ingredients include essential oils such as frankincense, sandalwood, lavender, bergamot, Bulgarian rose and orange to make the lotion smell pleasant. Then they compound various oils to make it easy to both apply and absorb. Last, they add magnesium and methyl sulfonyl methane (MSM) for painkilling properties. What comes out of the bottle looks like this:
20171018_092718As they have specifically stated, they wanted to make a product that both absorbed easily without an oily residue and smells pleasant, and that is definitely what they accomplished. Out of all of the pain lotions I have tried, this has the lightest scent. It also soaks in very quickly. I have never had to worry about waiting any length of time before touching any fabrics after applying the lotion for fear of making any permanent stains.

As luck – or unluck? – would have it, I got a nasty cold that turned into bronchitis two days after I received my bottle of Invigorate. Perfect time to pull out the big guns and really give it a go. The instructions were a little unusual for me: apply the lotion at the location of the pain, but also apply it over your spleen (left lower rib cage – thank you, nursing school anatomy class!). So for about 10 days, when I could remember in my fevered state, I would rub it all over my aching neck and then my spleen. I did notice almost an immediate relief in my neck; I’m not sure if there was any difference with rubbing it over my spleen, so I didn’t make that a priority.

A constant problem for me is the outside tendons running behind my knees. When I wake up in the morning I can barely bend my legs. Outwardly they appear fine, but if anyone could see what I feel, it’s as if someone has inserted marbles into the tendon sheaths. At night the same thing happens; the tendons tighten up and it’s painful to bend my legs or walk. I’ve taken to rubbing the Invigorate lotion into those areas behind and to the sides of my knees, and within minutes the stiffness and pain will ease up enough for me to stop thinking about it. The pain might still be there, but really, it’s just an afterthought, not ruling my every move.

Lastly, I managed to plan my first plane ride since moving back to Minnesota in 2015. Traveling wrecks me. I have to get to the airport early because quite frankly, I never know what to expect. TSA gets all handsy with their pat-down because I have to get wheelchair assistance directly all the way to the gate, and I have a TON of medications including a few injectables that have to be transported with ice packs. (Side note: I wait until I clear security, and then I sling my Darth Vader-like vog mask across my face to keep everyone’s bugs away from my mucous membranes.)

The downside to sitting first in the wheelchair for a few hours and then the plane seat for more hours is that my tailbone area starts to really hurt. I have osteoarthritis in my hips and the head of the femur doesn’t fit properly in the socket, but it’s not the same pain. I swear my coccyx is trying to punch a perfect hole straight through. I stupidly didn’t bring the lotion with me on the trip, but you had better believe it was one of the first things I grabbed when I walked in my front door when I returned. Without it my pain was a hindrance every time I sat on a firm surface for any length of time for about 4 days at the beginning of my trip.  So as soon as I could when I got back, I slapped some Invigorate on that particular spot at the base of my spine, and after just a few minutes could feel it kick in and the pain let go. I’ve had to reapply it a few times because I went to a meeting the next night and was sitting on a hard chair, but it was so much better than what it could have been without that extra assistance from the Invigorate lotion.
20171018_093113-1Quite frankly, I was surprised at how much and how quickly this product worked at mitigating pain. I do have one disclaimer, and that it can’t touch the gnarly abdominal pain in my abdomen from my allergy to the shunt that runs from my brain to my peritoneum – but then again, nothing does, so that’s not a shocker. Invigorate did a pretty good job on my neck when I was sick, on my tailbone area, and I continue to use it on the tendons behind my knees. I would definitely call it a win.

Resonant Botanicals Home Page

The Tender Trap Of The Gender Gap

I received three letters in three separate envelopes from the state medical board. I tore the first one open; a single page with the name of the respondent at the top and an official signature at the bottom. “Dear Miss: We are writing to inform you that your claim will not proceed because there is not sufficient evidence…

What the board was telling me is that my claim against three doctors is being denied. They saw my facial droop, my staggering walk, my shaking legs, heard my stilted speech, and then saw it go away when I tilted my head to manipulate the CSF in my cranium, and they wrote in my medical records that I was making it all up. It took me close to a year to get the correct testing after that. When I had everything together, I bundled it and sent it to the state including the disc with my complete MRI showing my brain had collapsed. I sent documentation from my previous surgeries. I outlined how their notes directly affected my life – both by delaying my care, and because I was denied by the Undiagnosed Diseases Network based on their notes.

The only conclusion that I can possibly come up with is that I’m a woman. Who could believe me? Why not attach a hinge to my cranium so I can flip my lid open for everyone to see, and then maybe, maybe, they will consider the notion that I’m telling the truth?

The irony is that this very place where these doctors work tweeted an article today about how there’s such a big gap in women being tested in healthcare trials, and how there’s still a huge gender bias against women when it comes to our symptoms being recognized and validated. THIS EVEN HAPPENS IN LAB RATS. So they are willing to admit it happens,


not willing to admit it happens with them.

Here’s another article that speaks directly to the phenomenon of being a woman in the healthcare system. Women are “emotional” and therefore shouldn’t be believed. By the way, female doctors can be just as unforgiving as male doctors.

I’m going to take a little time out to compare and contrast. I have a male family member who had rotator cuff surgery when he was a teenager, at least 13 years ago. He just had to have an EMG of his arms and possibly legs. I was explaining to him what to expect since his doctor’s office didn’t do a very good job. Let me emphasize that there’s a 13-year span between those two medical events. Yes, recovery from rotator cuff surgery isn’t pleasant, and an EMG isn’t pleasant.

In comparison, I’ve had 10 brain surgeries, 12 abdominal surgeries, 4 infections cut out, 7 crowns, 10 spinal taps, 2 EMGs (including my face), a year-long CSF leak, and a spinal blood patch in a 7-year period. For a lot of these I couldn’t have Lidocain because my body doesn’t metabolize it, and it’s the same for morphine. So every time I was poked or sliced or stitched, I felt it. I also tore the capsule and the tendon in three places in my left shoulder (but couldn’t get surgery because of all of the scar tissue I make). I’m also horribly allergic to my shunt that is still implanted and runs from my brain to my abdomen, so I constantly feel like I am being stabbed in my lower abdomen.

This male relative’s doctors immediately jumped at the first sign of his trouble. The help he has received is in stark contrast to how I have been treated, which is to be called a liar and to be treated as a hysterical woman. He was also considerably nervous about the EMG. I tried to reassure him that if he could get through rotator cuff surgery, the EMG would be much easier. Seriously, I would trade that CSF leak with just about anything. An EMG is a walk in the park.

So, what exactly do women have to do to “prove that they are in as much pain as men”? Shouldn’t it be the other way around?

Oh Ye Of Little Patience

Well-meaning people direct me to online support groups all of the time. Why don’t they work for me? Because I’m a snob.

A couple of days ago, I was summoned across the street to my sister’s place of business, because one of her co-workers knew an artist’s husband very recently had had brain surgery, and thought it might be beneficial for us to visit. As luck would have it, I had just finished showering and slapping on some makeup, so it wasn’t a big deal to finish getting my clothes and wig on to hobble across the street. When I walked in the door, I immediately recognized the woman. We had briefly visited during a previous show at the gallery. She and her husband were very pleased with the surgeon and her husband’s recovery, so I got the name of that doctor and another from her.

However, she looked over the top of her glasses at me and started with, Have you gone to a chiropractor? Yes, I explained, many times, and they did absolutely nothing for me. She wanted to know if I had gone to an herbalist. Yes, again, I sighed wearily, I had, and I’m taking supplements out the wazoo, because I need to, because my diet is very restricted. But they don’t make me better. My issue is mechanical and I need surgery. Then she wanted to know if I had tried the Chinese herbalists next door. I held up my hand and said that I’m very good at researching and am 1 to 7 years ahead of everyone else’s suggestions, so there’s no need to make suggestions. Then she moved to food. Was I juicingI really needed to juice everything! I said no. She started listing everything I should be eating, so I started cutting her off, telling her that each item caused a release of histamines, so it was actually dangerous for me. (Plus, with the few things I can still eat, why would I juice??? I get so little fiber now, and juicing removes most of the fiber.) Did I try an accupuncturistAgain, yes, and they did nothing for me. I know, I know, hard to believe.

God, I hate getting advice, especially when I don’t say, “Give me advice, I have no idea what to do or where to look.” She did write down the name of her otolaryngologist surgeon, whose specialty is cancer tumors of the head and neck. I’m still going to contact him. My tumor is not cancerous and he may not want to deal with it because it will probably grow back, but it’s worth asking him. However, I may be blacklisted because of my negative encounters with three other doctors within the same university system who said my problems were psychosomatic.

So, back to support groups: I hate them. I also can’t keep my mouth shut. One week, someone posted something about how she wished our rare disease doctor would team up with another doctor who researches the same disease. Unfortunately, the other doctor doesn’t have a license, so he can’t see other patients. I pointed this out. She said fine, then everyone needs to take care of themselves and stop smoking so they’re not on oxygen. That really pissed me off because the majority of us in the group can barely eat any foods safely because we’re always dealing with hives, have a really hard time finding medicines that don’t cause hives/asthma/anaphylaxis, and don’t smoke. I’m fucking allergic to smoke. I told her she was lecturing the wrong group. Other people got pissed off too. But then another person singled me out and told me to tone it down, and then it just went downhill from there. I was told that I should have just kept scrolling if I didn’t like what I saw. Then the original poster said she didn’t know that doctors needed licenses and not everyone knows that. I got so angry that I said that the leading doctor in this field most likely already considered the option of teaming up with other leaders, but they were in situations he was trying to get away from, so it was a moot point, and we should use common sense.

I admit it, I’m a snob. (For some reason, the woman who was trolling me told me that I was going off on a tangent because of that last remark. I told her that there was nothing that I was saying that was off topic, and I was responding to everything she and the OP were saying. I don’t think she understood what “tangent” meant.)

I’ve talked about this with my counselor. She agrees with me that a group setting isn’t what suits me best. I tend to steamroll people. Just today, someone in a group asked, “How many of you have NOT had _______?” and a bunch of people said “I didn’t,” but then a bunch of other people said, “Oh, I did, and it was like this and this and that.” So I wrote a message saying, “So, I thought this was about people who didn’t?” I got a reply that basically said that people wanted to share no matter what the question was.

Why don’t those fuckers write their own blogs if they’ve got so much to share?