If Nothing Else, There Is Hope

Written as a MySpace blog post 10.5 years ago, approximately 3 years before I became seriously ill with the disease that took me down and now has me bedridden. I can’t believe it’s been a decade already.

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The Legacy of Hope   6/2/07


When I went to the Chandler library to cruise for movies to check out for the weekend, the selections were pretty slim.  The Poirot series that usually appears on PBS didn’t hold any appeal, and “Show Boat” wasn’t looking any better.  I picked up a documentary called “Legacy,” about a multi-generational family of single moms trying to escape the inner city projects of Chicago.

The narration is provided by one of the teenage girls who lives with her grandmother, mother, aunt, six cousins and four siblings.  Within the first 10 minutes of the film and after the grandmother gives her first interview about living in the projects, one of the nephews – the one that showed the most academic promise and stability, and was looked up to by family and neighbors alike – was shot dead in the street.  The filmmaker chose to follow this family for a total of five years after this devastating murder, which included the boy’s mother joining and completing her 5th addiction treatment program, the narrator’s mother getting a stable job after being a welfare recipient since the age of 16, and the grandmother finally qualifying for her own house after a generous donation from an area businessman who saw the news story of the boy being shot.  The narrator was the first in her family to complete a high school education and receive her diploma.

This was a difficult story on many levels.  It is not dissimilar to watching episodes of “Intervention” on A&E.  Nearly every person of my immediate and extended family is or was an addict; I saw and learned things that no child should.  Every person in my father’s family with the exception of my uncle died young, including my father.  This month will also mark the violent death 12 years ago [as of 2007] of my aunt at the hands of her boyfriend.

Poverty was also a strong factor in my childhood years.  My mother nearly died when I was five after she contracted a bacterial infection, and was bedridden for three months.  Add that to the strain of my own medical bills, with my terrible asthma attacks, allergies, and numerous bouts of pneumonia and bronchitis….and no health insurance.  “Preventative care” was impossible to consider.  We stood in line for milk and cheese.  We were also issued these awful frozen fish portions, which were breaded fillets of cod with a hunk of cheese wrapped in as well.  Luckily an uncle was a manager at General Mills and would give us test samples of various foods that they were developing to mass market.  It was a treat when we once got “Bonkers” – if you remember those, they were rolls of peanut butter with rice crispies and chocolate chips on the outside.  Mostly, though, we got these horrendous breakfast bars – vanilla, strawberry, and chocolate – that had the taste of chalk and the consistency of a doorstop.  We ate them because we had to.  [It is no mystery that impoverished people are overweight because the least expensive food is the most fattening and unhealthiest fare you can conjure up.]

One Christmas there was no money for presents.  My mom contacted a local charity that gave us $14 each to spend on gifts, took us shopping, and had a wrapping party afterwards.  Mom still had a sense of humor about it – somehow she convinced me to tell her what I got her, saying “Oh, I’ll forget, I promise.  Just whisper it in my ear.”  Of course I told her.

It is also no mystery that being poor is stressful, humiliating and limiting. It is easy to say “Why don’t they just ___________ ?”.  Right now, as a nation in general, we have a very them-vs.-us mentality; every man for himself. If you are lucky enough to have grown up in a household that never really had to struggle to survive, it is much more difficult for you to understand how this cycle of poverty continues through generations.  But instead of saying “Why don’t they ________?”, why don’t you ___________ to help?  Because it’s their problem, not yours.  I’m not saying that we have to give $10 to the people with signs at the end of freeway exit ramps.  Can’t we lend a hand before it gets to that point?  It may not be you or your family right now, but it could be in the future.  Medical expenses alone are becoming outrageous, even for those covered under company policies, and one major illness could be financially devastating.  Half of all bankruptcies filed are attributed to medical bills.  For some reason, we as a society have associated medical bills with outright laziness, when it couldn’t be further from the truth.

There were elements in this film that I could not relate to.  My extended family never bonded to get through the hard times.  When my aunt was killed, my father had to admit to the detectives that he “never really socialized with her” and didn’t know her boyfriend was violent.  Her death was heartbreaking, but instead of offering each other support, fights broke out over stupid things like who would get her dresser and bed.

These women in the documentary also had strong faith in God, which was never a part of my upbringing.  Hearing “God will get us through this” and “by the grace of God” was like they were speaking in tongues to me.  Faith is not something I practice.  Even if we’re talking about people in general, or work, or good health, or anything for that matter, I never sit back and say “I have faith”.  Instead, I have hard work and critical thinking skills.  If I don’t do for myself, I have no business sitting back and waiting for something, or someone, to take care of everything for me. 

Yet, there is still the legacy of hope.  We need to be reminded that despite our circumstances, we can rise above with dignity and flourish.  You or I may have been in a bad place 10, 20, 25 years ago, but that doesn’t mean we have to be there now.  Good deeds should be handed out to strangers, friends and family alike – you may need their help one day.

My mom has recently started worrying that she made too many mistakes and bad decisions when raising my sister and I.  It’s quite a time delay, since we are both in our mid-thirties and turned out pretty straight.  I don’t hold anything against her.  She also taught us love and affection, dignity, and the joy of survival. 


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.

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?

We’re Breaking Up

“There’s plenty of fish in the sea.”

Are there, though? I want someone who really listens to me and understands where I’m coming from, who sees me for who I am and not who they think they would like me to be. I’m sure they wish I would lose a little weight, or dress a little better. Maybe they wish I would talk about something else besides always going back to my rare disease. But I can’t, because it rules my life.

I’m talking about my doctors, of course. They keep breaking up with me – or at least, it feels like it. And this is incredibly difficult as a rare disease patient.

The first one to jump ship was my primary care doctor. To be honest, I was a little relieved. I had had a difficult time landing her in the first place – other doctors writing things in my records such as “Munchausen’s” – but most recently she had told me to stop looking for a solution and to just accept it, and that there probably wasn’t anything really wrong with me. She had seen my MRI and claimed that she didn’t know enough about the brain to make a judgement call about what she was looking at, but JFC, even I could see that if all of the big, cavernous spaces are gone and the corpus callosum looks like Charlie Brown’s hair swirl, there’s a problem. Anyway, hers was the first letter to arrive on the University’s letterhead.

The second was my pain doctor. I knew about his desertion ahead of time because we talked about it during my last visit with him. He worked it out so I can remain his patient at his next office. HOORAY. I don’t have to train in another doctor. I like him. We have mutual respect. But I still got his letter on the University’s letterhead and an official-sounding offer to continue my care there with someone else, if I wanted. (No, thanks.)

The third one was my mast cell disease doctor. This one is actually extremely devastating. I felt quite lucky to have found him and to have gotten my diagnosis, and then to have been under his care for about a year. The problem with this disease is that it was only named about nine years ago, and so not much is known about it. I probably fit into a different subcategory from a lot of people because my CSF and dura have been affected.

The mast cell disease doctor is relocating from Minneapolis to New York. His goal is to further his research; he will make himself available to any doctors who reach out to him with questions. He will also see patients on a cash-only basis: $2,000 each for the first two visits, then $650 for each visit after that. 

I can understand why the mast cell disease doctor would want this type of arrangement. He would not be at the mercy of insurance companies. He could run his office and research with full autonomy and receive complete compensation for his time, rather than having to negotiate contracts. And he’s not a young guy; I’m sure he’d like to reduce his own stress in the gloaming of his years.

Specifically, these are my barriers: 1) I’m on Medicaid, so I’m unable to go outside of the state of Minnesota. I’ve tried many times, and each time, the petitions have been turned down. It doesn’t matter how rare my disease is. 2) I can’t find local doctors willing to take me as a patient. Believe me, I have tried. I’ve sent them info ahead of time (per their request), I’ve gone in without giving them any hint, I’ve brought all of my records with me, I’ve bargained with them, I’ve promised not to be a nuisance, I’ve answered all of their questions…bitch, please. Any way that you can think of to convince someone to become your partner, I’ve done it. 3) I don’t have any way to save up money. My earning power is gone – it’s not like I can go to work and take my bed with me so I can keep the pressure off of my brain. I’m using up every last bit of my savings for living expenses while I wait for my disability hearing, which I believe will be in the next six months, so that’s three years guaranteed without a cent of income.

What happens if I don’t receive care? Well, it’s going to get ugly. My chest, arms and face have been covered in hives for the past month. I was supposed to get another prescription last week, but that was abruptly dropped mid-process. This is a crazy disease. Other patients constantly go into anaphylactic shock. I haven’t gotten to that point, though I sometimes have sudden shortness of breath, or lose my voice because my throat becomes suddenly raw. Unfortunately, for me the allergies continue to get worse and stranger, also a common factor in this disease. I won’t even go into the brain stuff, except to say that I know it’s being strangled too.

I can’t adequately describe what it’s like to have a rare disease to people who don’t have one, especially when it comes to finding medical care. I’ve had a fibromyalgia diagnosis since I was 23, and those of you who have chronic illness may have an inkling, but this is a completely different ballgame. I got a diagnosis last fall but have been sick since birth (and I’m 43 now). I only figured out a month ago myself – MYSELF – why I needed 10 shunt surgeries. There are no other documented cases like mine.

If I can put this in perspective, imagine that your child is one in a dozen in the world who has Progeria – the disease that makes children age prematurely, so that they look elderly as infants and young children (and they come with a plethora of underlying maladies). And imagine that there is only one doctor in the world who is an expert, so every child with that disease is going to that doctor. One day, that doctor is killed in a motor vehicle accident. Then there is no one else to treat those children.

That’s what it feels like right now to have my mast cell disease doctor break up with me. The disease affects more than a dozen people, but to actually find doctors who can and will treat me is impossible. I think it would be easier to ask a man to have a baby naturally. 

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

People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

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

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

I didn’t have any expectations with this TechCare Pro24 Ultimate Massager, deliberately.

In actuality, I was pleasantly surprised. The controller feels like it’s made of high quality metal, not cheap plastic. It has the capability of running two lead lines at a time, though the user can choose to run one lead at a time. The lead lines themselves are considerably long, which is useful if you need to reach around to the back of your body for any reason (which, if you’re anything like me, you will).

I’ve been trying to walk outside while the weather has been cooperating, because I’m trying to get stronger. I have a lot of joint pain because of fibromyalgia, plus I’m in bed a lot to keep the pressure off of my brain, but the downside is that the rest of my body pays the price. Since I’m walking outside there’s a lot of variation in the elevation and terrain and my muscles and joints very quickly and loudly rebel. It’s the perfect time to put the TechCare Pro24 Ultimate Massager to the test.

I want to pick the right size of pad according to where on my body I want to attach the pads. This unit comes with three sizes:

I chose to work on my right hip, which never fails to make its presence known. The big, rectangular pads are the best for that area of my body, so I decided to slap one on my back right flank, and then one on the top of my right femur.

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

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

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

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

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

Nothing Like Designer Jeans

I’m listening to Pandora right now, and Whitesnake’s “Is This Love” happens to be playing. What were the hottest jeans from 1988? Maybe they were Guess?, maybe they were Girbaud (with the little loop at the top of the fly). I remember that it was important for guys to have Levi’s, at least in the little town where I was attending school when Tawny Kitaen was straddling two Jaguars.

There’s trends in medicine too. Remember how just over a century ago, no one really had a grasp on how important it was to wash your hands? And remember how 80 years ago, antibiotics were just around the corner, but before they were available to the general public, syphilis could very well be a death sentence? But it’s not so much trends as it is that we become more aware and educated.

Medicine attempted to treat PTSD in soldiers and document it for as long as wars have been fought. Different names have been attached to it; “Soldier’s heart” for the Civil War, “shell shock” for World War I; and “Combat Stress Reaction” for World War II.

After WWII, the American Psychiatric Association worked to put together a label that would apply to all symptoms that would appear as a result of traumatic events, not just war. It has actually been through five revisions to date and includes four different types of symptoms: reliving the traumatic event (also called re-experiencing or intrusion); avoiding situations that are reminders of the event; negative changes in beliefs and feelings; and feeling keyed up (also called hyperarousal or over-reactive to situations). Most people experience some of these symptoms after a traumatic event, so PTSD is not diagnosed unless all four types of symptoms last for at least a month and cause significant distress or problems with day-to-day functioning (see PTSD: National Center for PTSD ).

Since I’m part of the Chronic Illness Bloggers network, I’ve been able to read a lot of my fellow bloggers’ unique perspectives, and more than once I’ve seen references come up about PTSD in medical settings. I cannot believe what some of you have had to endure. I worry about putting on my Girbaud jeans and raising my hand and saying “Me too,” but after having many discussions with my counselor, she has confirmed that I indeed have PTSD triggered by my experiences brought on by this mystery disease.

Was there one big bang? I don’t think so, just like there isn’t one big battle in war, but a whole war. There were certain things that were especially traumatic. The time that my neurosurgeon stood in the doorway of my hospital room on the night of my birthday in 2013 after my fourth surgery and told me he would have to send me home nearly blind because he was just in there and it had to be something else, not a shunt failure was especially traumatic (turns out that it was a kink in the shunt that developed that would not have been discovered if I would not have thrown a hysterical fit to have a nuclear shunt study performed).

One story that I told to my counselor in this week’s session happened January 2014. 2013 was my big year of surgeries – six in all. I got to know my symptoms of shunt failure really well, plus I figured out that I was making copious scar tissue and adhering the shunt to my chest and abdominal wall. At various times I also leaked great big pools of CSF out of my spine so that I had a softball-sized vat of fluid sitting on my back, and a more dangerous situation of having a shunt in my brain and another one in my back, making it harder to control pressure.

My last surgery in 2013 was December 21st; that was when my neurosurgeon finally believed me after 2.5 years that I was allergic to the shunt, when he saw for himself that my abdomen was red and inflamed, like a “war zone,” as he put it. I told him that I needed to see an immunologist and a rheumatologist, but he said that I was “taking it too far.”

A month later, my shunt clogged or strangled again and it was adhered to my abdomen by scar tissue. I went to the ER and saw the on-call neurosurgeon, someone I had never seen before but who was with Barrow Neurological like my neurosurgeon and had access to all of the notes from my surgeries and could talk to my neurosurgeon. I demonstrated for him my usual problem when my shunt isn’t working and my symptoms come back: when I’m upright, my face is paralyzed and I can’t open my eyes; when I lay down, my eyes immediately open because the fluid moves away from the brain stem. When I sit back up, the fluid moves back to the brain stem and presses on the nerves again.

The neurosurgeon went away. The regular ER doctor came in and said I had a clear case of a classic migraine headache. I told him it was ridiculous and asked if anyone read my notes from my chart from all of my other admissions and surgeries, and he said he didn’t know, but that was what the on-call neurosurgeon said. Then he handed me a prescription for opioids. I was absolutely floored. I demonstrated for him what happens when I put my head parallel to the floor – my eyes open – and what happens when I’m upright, and asked him if that’s “typical migraine symptoms,” and he said he didn’t know, but that was what he was told, so that was it. I told him it was bullshit (never raising the volume of my voice, by the way). I told him that if they discharged me, I was going to turn around and ask to be admitted again. He told me they would refuse to treat me. I asked him why he prescribed pain medication for me when I wasn’t in pain, my shunt was simply clogged. He said that with patients with clogged shunts, they always get headaches, so if that was really my problem, I should have a headache. Then he left.

I was openly crying and shaking. The nurse came in and her whole demeanor toward me changed. She told me that I had to stop being abusive to them, they were just trying to help me; all the while I couldn’t even speak, I was so stunned. Then she yanked the IV out of my arm without putting pressure on the puncture so that I bled all over and then snidely said, “Oh, look at that, you’re a bleeder!” I just sobbed harder. She left the curtained room and I shut the curtain and cleaned myself up and managed to get changed. She came back with the discharge papers. I asked her if she could walk me out of the maze of the ER back to the lobby. By then it was 4 a.m. and quiet. She told me that she was too busy and that I had to find my own way out. My room was next to the nurse’s station, and many of the night ER staff had congregated there and were observing the exchange. They could also see that I had a cane and paralyzed eyelids that were mostly closed; one offered to help, but my nurse said, “She’s fine.” Another person asked me if that was true, but I couldn’t speak. I just kept walking. You could have heard a pin drop.

I finally made it out to the now-empty ER lobby and managed to call a cab and directed my face to the windows so I could watch for the familiar colors of the cab company. When the pressure gets bad, that’s all I can do – make out shapes and colors.

When I contacted my neurosurgeon’s office after that visit, I discovered that he actually upheld the on-call neurosurgeon’s decision to diagnose me as having a migraine episode, even though my neurosurgeon had been following me for 2.5 years and knew my symptoms just as well as I did at that point and performed all 8 of my surgeries to date. Everything that I have told my neurosurgeon that has been wrong with my body has been completely correct, and for him to suddenly go with something as far-fetched and outlandish as to describe this as a migraine episode immediately caused me to distrust him deeply. Before I would have talked to anyone who would listen about how great he was about thinking outside the box; after that I only hoped to survive.

Because of this horrible ER visit, I went home and started stretching my torso because I could tell that the shunt was adhering again to my abdomen only 3-4 weeks after the previous surgery. It was the only thing I could think to do. In the process, I managed to stretch so vigorously that there was a tug of war internally and I created a break in the shunt, which led to a leak…and because my neurosurgeon finally conceded that my demand to get an immunologist and a rheumatologist involved in my care was actually very practical, he refused to fix my leaking shunt for almost a year, which was EXTREMELY painful.

But that’s another story.

Back to PTSD. Post Traumatic Stress Disorder isn’t reserved for those who only experience war, or even a natural disaster. It certainly applies to anyone who has been abused in a relationship.

And it certainly applies to me. And I’m not even done with the war. I’m not even “post” anything yet. 


Can I Offer You A Hot Towel And Some Crumbs?

Thursday was a gorgeous day by Minnesota standards in September. It was bright and sunny, no clouds or humidity, warm enough still to wear sandals and short sleeves. I caught some pictures of flowers and bees and captioned them #winteriscoming (because I’m not fooled – this is, after all, Minnesota, and if you can’t tell, the second one contains a bee):

I had just settled back in my bed after the short bus had shuttled me to my errands when my cell phone rang. The ID said it was the U of MN clinic. I thought at first that it was a reminder for my appointment on Monday, but usually I get those on my home phone, so I quickly dismissed that thought and picked up. It was my orthopedic doctor – not his nurse, but the actual doctor who has been dealing with my left shoulder. I couldn’t help but immediately be on guard. He said my MRI results were in and that I indeed had a significant tear in one of my tendons and also in a labrum as well as tendinosis, and that I had choices: I could go on anti-inflammatory meds, I could get steroid injections, I could continue with PT, I could get a surgical consult. I asked him if he could do an injection on Monday when I saw him. He asked me if I would be okay until then.

I’ve been breaking my teeth for months now and begging for help and begging for an MRI, and he’s suddenly worried about me being okay for a few days now that he’s discovered that I have some significant tears?

Someone get this man a medal.

I asked him if he wanted to delay my appointment past Monday for some reason. He said no. I told him that I had been in pretty terrible pain up to that point, so what did a few more days matter? I’m not sure what he was offering besides that because he didn’t say, “Hey, I can make room for you during the day tomorrow,” and he didn’t say, “I can call in a prescription for you to try to make you more comfortable.” He just said, “Okay, if you don’t have any questions, then I’ll see you Monday.”

I have no idea why he called unless he was just trying to shave some minutes off of our appointment time on Monday so he could have the needle ready. Maybe he was trying to make himself feel better.

Without histrionics, I will say to him, “I told you so.” I will have a question for him on Monday, and that will be this: Do women not get tears in our tendons in our shoulders? The answer of course is of course not – obviously women do get tears in our tendons. We just have to do a lot more to be believed, like dragging our limbs behind us in a wheelbarrow.

Rare + Rare = Still Rare

Yesterday was generally a non-productive doctoring day for me. I went to see a neurologist in a different medical system outside of the ones that I have tried just to see if I could at least get an acknowledgment that what I’m dealing with is not that idiotic label “facial weakness” that the U of MN doctor put in my file. Besides trying to work towards a diagnosis, I’m also trying to build my case for disability, and I keep hearing my attorney’s voice in the back of my head saying, “If you don’t get a diagnosis by the time you are sitting in front of the judge, you’re screwed.”

The neurologist was very friendly and open, and definitely had the approach of working with me as part of a collaboration rather than dictating to me. However, we still had a breakdown in communication. She could not wrap her brain around the concept about why I have a shunt in the first place (and indeed is the same barrier for 99% of the doctors I talk to even though I explain to them that the shunts were placed because my symptoms improved temporarily after receiving lumbar punctures 12 hours apart). Almost all doctors incorrectly jump to the conclusion that my face is drooping because I’m overdraining – as if the fluid is pulling my face down with it, like I am living out a Salvador Dali painting. It’s easier for me to explain the shunts and the failures and the symptoms to people who have absolutely no experience with this world because they have no expectations and no preconceived notions (except for the asshole armchair “experts” who don’t know shit but think that watching a few episodes of “House” have made them suddenly intellectually superior).

Because this doctor had wonderful bedside manner, I made sure I took the time to assure her that her inability to give me a diagnosis or a direction was not her fault or a failure on her part as a physician. As a matter of fact, she was doctor #50 in six years, and I told her that too. The combined look of horror and chagrin was a bit comical. I gladly accepted her recommendations for a pediatric neurosurgeon (because sometimes they take the most complicated adults) as well as a rheumatologist she thought would have the best bedside manner, so all was not wasted on that visit. I also explained to her that I would be attending the national hydrocephalus conference June 16-19 being held here in Minneapolis and that I had t-shirts printed:

This week another one of our relatives passed away. His niece happened to contact me through 23 & Me, where I have an account set up after getting my genes tested last July; I wanted the cheapest way possible to get them set up in a database while I tried to figure out what is going on with my body and just how rare it really is. It turns out that this relative of mine has a daughter who is also super rare, truly one in seven billion! It’s so rare that they actually had to formally name it: Hemolytic Anemia Medicine Lake. The “Medicine Lake” portion of the name refers to the area that I and a large portion of my extended family grew up and lived in in the western Minneapolis area. Unfortunately it’s not in any way similar to what my problem is so I can’t go to the NIH and tell them to link our cases, but we definitely hit the rare disease lottery in this family.

By the way, universe, I’d like to win the LOTTERY lottery.

And I won’t be going back to this neurologist, as nice as she was, because she described herself as a “neighborhood neurologist.” She said that she was a step or two down from the facilities where I had been trying my luck, and this was way over her head.