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Angel Of The Migraines

I have a wonderful life.  Great husband, great family, and I love my job…it’s not perfect, but it’s good.

Except…

For flippin’ migraines.

Growing up I got one in a blue moon and really, they were bad, but I wasn’t stressed out about them.

I’d just get one and think, “Oh, this sucks. I have a migraine.” And I’d take some medicine, drink some really strong instant tea and it would go away.  Later, I’d get them and take a cocktail of Benadryl and ibuprofen to go to sleep and it wouldn’t be a big deal.

Five years ago, I woke up one morning, laid in bed for a little bit with my husband, got up and started to get ready to leave town for my grandmother’s funeral.  I bent over to pick something up off the floor, stood up and next thing I know I hear my husband yelling “Jennifer! Jennifer! Open your eyes and look at me! Jennifer!” What the heck? Why?  Then I realize I’m in a really weird position.

One doesn’t normally find herself sitting in her laundry basket.

Then I realize I’m still naked.  Then I realize I need to throw up.  Then I realize the only other time I’ve seen my husband so scared was when I passed out from a fever a couple years before. And can I say that since my step-son’s best friend at the time was one of the EMTs working, I’m really happy my husband didn’t call 911 so he could find me naked in my laundry basket?  What does it say about me that I’m more worried about that than the fact that I was unconscious and naked in my laundry basket?

So that set off a round of doctors, emergency rooms, MRIs, CT scans, and heart monitors. And daily migraines.  Yep, I said daily migraines.  My husband’s thought is that I hit my head against the wall when I passed out, and maybe it knocked something haywire even though my head didn’t hurt and no damage has been found.  The best news out of all of this is that I actually have a brain.  I have pictures.  It’s there.  Contrary to some people’s belief I do have more than just empty space between my ears.

So I went 6 months having daily migraines.  I was taking a cocktail of medications to manage the pain, because these are not normally the type that are aided by Imitrex or things like that. I had to take an anti-inflammatory, a pain medication, muscle relaxer, and my dear old friend Benadryl to get rid of the pain.  And I needed to sleep. I was working in a place that had a lot of chemicals, so after 6 months of working half days we decided that it was best if I found a new job.  So I did.  And my migraines have dialed down to a couple a week.

I have two kinds of migraines, which is part of my problem.

I have the classic which is where you get the aura and have squiggly lines in your vision and it feels like someone is jabbing an icepick in your brain.  Those are rare for me. Then I have my normal ones where it feels like the angel of migraines came with his boxing gloves to punch me in the left eye. It’s always the left side. And either I wake up with it or suddenly I realize, “Oh, hey, I have a migraine”.  There’s no warning like the others.  And with my normal ones there are three levels of pain.  “Oh, hey, my head hurts.  Ok.” is the mildest. Then there are the ones like today, “Crap my head hurts, but I can function so here I am, but leave me alone”. And then the worst are the “Oh freakin’ hell, somebody kill me now!”

Recently, I’ve been introduced to a new circle of hell – the DOUBLE migraine.  Really?

Because the others weren’t bad enough?  This is where I get one aura, my head starts to hurt really bad, then after that aura goes away I get another one about 20 minutes later.  Seriously!

The pain from that is excruciating and double.

Along with my own personal pain and agony that goes along with these migraines, I have to deal with other people.  Most of my migraines are like today.  I look fine.  I’m at work.  I’m functioning.  I’m typing a flippin’ blog for crying out loud.  If you’re paying attention, I look like I’m a little off.  But to the casual observer I look fine.  Something may come up and I’ll say “Oh, I’ve got a migraine.”

But when they’re bad enough I need to call in to work, load up on drugs and sleep all day, I get “but you could work the other day”.  Yeah, out of sheer force of will and there was too much I had to do.  And then there’s my husband.  He’s the only person on the planet I wish would get just one migraine.  Just one.  I don’t get them just to ruin his plans.  I don’t get them because I just want to miss a day of work.  I don’t get them to get out of cleaning.  There are the granddaughters. God bless them.  I hate it the most for them.  There are times it is impossible for us to be in the same house when I have a migraine.  And unfortunately, they’ve learned to ask “Do you have a headache?” when they come over and something seems off.  They still need to be able to be little girls, so I try to tell whoever is responsible for them that they don’t have to be quiet and if they want to come give me a hug it is really okay.  But most of all, it’s the people that want to offer me solutions.  Like I haven’t tried everything already.  And 5 1/2 years later, I have a pretty good idea what causes them, but you just can’t avoid the weather.  Although, I kinda like my husband’s ex-mother-in-law’s idea…medicinal marijuana.  I really hate being perceived as a whiny-a$$ baby who complains all the time, so I don’t share with many people.

So there’s my migraine rant.  I hate them and they hate me.  I hate that it inconveniences others.

But there’s nothing I can do about it.

Seattle & Venus

We spent the weekend away in Seattle, our first real weekend away from Kellen. Although we missed him, it didn’t hurt to have a weekend away from the constant demanding needs of another human. The first night we were out to a nice dinner on the water, and another family came in with a whiny toddler, and I wanted to tell them that I had a No-toddler-within-50-feet-of-earshot rule while on vacation, but that didn’t seem fair! We have certainly caused our share of raucous at restaurants.

Our trip was mostly for my check-up with the Lyme doctor, and we decided to add on a couple days away. This was the view from our hotel room:

We watched cruise ships load and unload passengers as though it were a 24 hour cattle call. We made a mental note that if we ever went on a cruise, we’d arrive late and make sure we could afford to be a VIP.

On Friday, I had a PICC line put in. It’s a more permanent IV line that allows me to give myself daily meds that will hopefully penetrate the blood-brain barrier and kick these spirochetes to the ground. After I had it put in, I told Dan we needed to name it. When Dad was sick with cancer and we were being given a five year life expectancy (it’s been nine years thanks to a great clinical trial), we named his IV stand Freddie. Whenever it was time to walk around 4-south, one hand on the pole, the other closing his hospital gown, it gave us a momentary laugh to call for Freddie, the IV stand. I guess it personalizes medicine a little and makes it less scary or… medical.

Dan decided that we should name it Venus, the intravenous PICC line.

Lyme Disease Treatment Options

Lyme Disease treatment options are all over the place – no one can seem to stick to any standard.

This is her frustration:

I am sitting at the ER. I have had a headache since Thursday with pain behind my eyes. It feels like my skull is trying to break through my eyes and nose and ears. I wish it were sinus related. But it’s not.

The reason I’m at the ER is two-fold. I want to make sure that I don’t have spinal fluid building up in my head. The second reason is more complicated. I was hoping maybe I could switch back to being treated here by my neurologist, who is covered by insurance. My Lyme doctor isn’t. She wanted to treat me with IV antibiotics. My Lyme doc thinks that orals are the first line treatment.

You see, Lyme disease is rife with controversy. Does it exist in the numbers that the International Lyme Disease Association says? Are the current tests sensitive enough for diagnosis? Does Lyme seroconvert in the blood like other infectious diseases? Is it easily treatable? Will three weeks (and maybe six weeks) of oral doxycycline treat all forms of Lyme, even if it’s late stage, which mine is? Will four weeks of IV rocephin treat neurologic Lyme?

I have Lyme, but my diagnosis is still suspect.

When I saw my neurologist in September, part of my Lyme test was positive, the other negative. When I went back for blood work,the negative part was now positive. But the positive was negative. Confused? My neurologist wasn’t convinced that I have active Lyme disease though I am symptomatic, and my tests prove that I have been exposed to Lyme (and my first test indicated active Lyme).

So I went to Seattle. I tried Levaquin, but it can cause joint inflammation, so any sign of joint pain and they stop treatment (joint pain is common in Lyme). Then I was put on Rifampin, which I have stayed on for months. It treats a secondary infection that is thought to occur often with Lyme disease. It resolved the shooting electric pains in my arms. I was put on Amoxicillin, which I’ve been on for months as well. Then I tried Minocycline for Lyme. It caused me to walk sideways. I already was dizzy. I didn’t need to have sea-sick vertigo as well. Then I tried Biaxin. I broke out in hives. I tried Doxy. It caused heartburn that radiated to the base of my skull. But the doxy DID work. I switched to Zithromax, and all of my symptoms returned. So I’m back on Doxy and taking Nexium to combat the heartburn. The problem is I’m not getting better like I did before.

What’s next? IV drugs. Insurance will pay for one month. It often takes more. A PICC line. Daily infusion. I was hoping to get treated from someone locally. But it looks like the doctors here don’t want to touch this. When I get home, I will call my doctor in Seattle and wait. And if this doesn’t work, I am flying to the Northeast where this stuff is treated often and where it costs a lot of money to see the top docs.

I am ready to be healthy. Six months with little improvement is just not acceptable to me.

Complex Medical Conditions Do Not Equate Mental Illness Or Neglect

For many, becoming a parent is an inherent, indescribable experience that subconsciously transforms you into a fiercely protect caregiver. When your child becomes ill, your natural inclination is to seek medical attention and abide by the doctor’s orders. However, if the illness is caused by a complex medical condition, sometimes answers are not as easy to find. There comes a point in which, after numerous attempts to find the answer, the burden of proof appears to be placed upon the families or even the patient themselves.

With the embattled medical negligence case between the Pelletier family, Boston Children’s Hospital and Massachusetts Department of Child and Family Services (DCF), it brings to light the struggles of treating a complex and poorly understood medical condition, patient and family rights, and quality of life issues. I am not a medical expert, I am not a lawyer, and I do not know the Pelletier family. I am someone who struggles with a rare medical disorder, and thirty years ago I was Justina Pelletier.

In May of 1984, after numerous hospitalizations, tests, visits with specialists and multiple incidents of respiratory arrest, local doctors in collaboration with Boston Children’s Hospital were out of answers and filed a complaint against my parents with DCF. The complaint was based on unsubstantiated claims by someone who claimed to be an “acquaintance.” There was no home visit, no interview, not even a second opinion from an unaffiliated medical expert. My parents were accused of medical negligence even though they followed the advice of the pediatrician and the hospital’s attending physician.

Reading the report, I found it not only to be inflammatory but completely devoid of any factual evidence. There was no mediation or care plan developed between the hospital and my family, only threats echoed through the Department of Children and Family Services. When my father questioned the DCF case manager on the legitimacy of the accusations, her response was that she read the report and “just knew.” While I understand the intended purpose of these investigations is for the best interests of the child, that is not what happened with my family and it doesn’t appear to be the case for the Pelletier’s.

When you look at the Justina Pelletier case, it is mind-boggling; it feels like there has to be something more to the story that’s not being told. How could a world-renowned hospital and an agency dedicating to protecting children be responsible for the implied child abuse and child neglect? If you do not have firsthand experience, it’s hard to imagine. For my family and I however, we feel overwhelming compassion after every press release for Justina Pelletier.

Luckily in my case, my parents were able to reach an outside specialist who performed an emergency bronchoscopy – a procedure Children’s Hospital was capable of but failed to do – and located the source of my life-threatening respiratory distress. A rare structural birth defect called an “innominate artery” caused my aorta to cross over my trachea, crushing it, and in conjunction with a smaller lung defect would have cost me my life had my parents not pushed for more answers. Approximately one month following the DCF investigation, surpassing typical life expectancy for the defect, I had lifesaving cardiac surgery at Massachusetts Eye and Ear Infirmary, a world-renowned teaching and surgical facilities for disorders of the head, neck and chest. Had the Department of Children and Family prevailed, it would’ve killed me.

My health struggles did not end following the surgery. After twenty years of multiple surgeries, injuries, and complications, I was diagnosed with ehlers-danlos syndrome. The genetic specialists at Brigham and Women’s Hospital of Boston compared my medical history and, combined with my clinical presentation decided that I fit the profile for the hyper mobility sub-type of Ehlers-Danlos syndrome. My defective collagen and its systemic effects validated my experiences and helped me build a care plan with my team of specialists. In doing so, it helps ensure the best quality of life possible. Justina Pelletier and all patients with complex medical problems deserve this.

“Doctor shopping” is a term thrown around when a person seeks answers from multiple providers or alternate treatment. Being proactive and locating appropriate treatment is not doctor shopping. Complex medical conditions do not equate psychological imbalance or parental medical negligence.

Now that the state of Massachusetts has been granted permanent custody of fifteen-year old Justina, the irony is inescapable. If Justina’s condition is purely psychosomatic, as suggested by Boston Children’s Hospital, and her parents are to blame? Why does she continue to deteriorate whilst presenting with tangible physical symptoms? If her parents have not been permitted contact with her, surely there has to be a more logical answer. The fact of the matter is Justina Pelletier is being punished for being ill while the witch-hunt against her family plays out on a national platform.

My hope is that Justina is as fortunate as I was and receives the medical care she so desperately needs … before it’s too late.

I’m Proud Of You Mom

In August of 2006, my mother was diagnosed with cancer. I was at the movie store with my boyfriend and our 4 month old daughter when I got a phone call from my aunt. I had to stand outside because I couldn’t hear her inside. As I stood in the wind with one ear plugged, huddled so she didn’t hear the gusting through the line, she told me my mother was in the hospital fighting for her life. I couldn’t believe it. In shock, I think, I asked her question after question.

My most important question: “What happened?” She went to the ER with abdominal pain, which turned out to be a tumor pushing on her internal organs. She was in multiple organ failure and had to be wheeled into surgery immediately. They only had time to get contact information for my grandparents before she was under and being cut open. They had removed what they could, put her on dialysis and a colostomy bag, and told my grandparents to come as soon as they could. They were 4 states away.

Against the odds, my mother survived the massive surgery which left her with no large intestine, no reproductive organs, and one barely functional kidney. My grandparents packed her home up, leaving behind precious memories and beloved family pets in the process, to try to get her back to their home before another rent payment was due. A few days after they finished packing, my mother was declared stable enough to transport and made the several hour flight away from the only state she had ever called home.

Practically an invalid for months, she relied completely on my grandparents for everything. I was unable to get down to see her, despite impassioned pleas to everyone I could think of, including my and my mother’s previous employer, for a loan. I just needed a plane ticket. A simple fucking plane ticket. $300 that our family couldn’t afford without shutting off the gas in the middle of a Michigan winter. What if she had died in that hospital? Or the months just after? The doctors hadn’t given her much chance, and I couldn’t get a lousy $300 loan to go see her.

How could things get so fucked up so fast? I’d just seen her! She came up after our daughter was born, twice, because soon after she left the first time I needed gallbladder surgery. She may not have been a poster-girl for perfect health, but she wasn’t DYING! How could two months make such a difference? And why the hell couldn’t I get someone to give me a fucking hand up so I could go see one of the most important people in my life when they were practically one foot in the grave?!?!

By the time I finally got to see her, she had mostly stabilized and was started on chemo so the tumors wouldn’t start growing again and really do her in this time. It was a calculated risk: if they started it too soon, and she couldn’t handle literally injecting poison into her body, she died. If they waited too long, the extremely aggressive tumors could grow right back and totally kill her internal organs, if they didn’t starve her of essential nutrients first. Rock, meet hard place. Fuck me.

But she survived. Against all odds – and often stupefying her doctors – she lived. She bulled through that surgery, her recovery, chemo, and eventually radiation as well. And in the end? She kicked cancer in the balls, hard. Her very last oncologist appointment gave her an official diagnosis of remission. Three months later, she died. The treatment(s) had left her with an inability to absorb vital nutrients.

But even as she lay dying, she had the satisfaction of knowing she had won.

She might be dying, but she’d taken the big C with her, kicking and fucking screaming. I’m proud of you, Mom.

The Doubters

I had an appointment with a new neurologist this week. A neurologist who, by all accounts, is pretty good at what he does. But there’s this thing that happens at each new neurologist’s office when you come in with the scars of surgery from Chiari Malformation.

The Doubt.

There is a pretty good percentage of neurologist who think that Chiari Malformatio isn’t significant. They think that it is almost exclusively an incidental finding that just happens to show up on MRIs of people with crushing headaches. It’s like they hear hoofbeats, see a horse and go, eh, I think that’s just a coincidence.

So when I told the neurologist my past medical history, before I got past the part about being diagnosed with Chiari Malformation he looked and me and said, “now, was this a real Chiari?”

No, you’re right. It was really a series of unicorns and rainbows that made it look like my brain had squirted out into my neck, thereby compressing a lot of really important stuff. How silly of us to not realize. I wonder how the 3 neurologists I saw before surgery and the 3 neurosurgeons I got second and third opinions from missed the fakeness of my condition. I mean really.

It makes me angry. It comes across as a doctor asking you if you had brain surgery for fun. It comes across as an accusation of faking it. And it makes me livid. The last neurologist I saw did the same thing. As did the one before that. And until they look at my early MRIs showing the severity that my Chiari and how it messed with my brain and spinal cord, they treat me as though I made this up, as though I wanted this life, that surgery, this year of endless headaches.

In the end they all let it go, or change their mind and move on with the exam and eventually treatment. But I feel like I spend the first 20 minutes of each exam justifying the scar on my neck, justifying the choice to have this condition treated.

I have a lot of faith in doctors. I’m married to one, I am entering into a career in the health field myself. But I am tired of being condescended to. I’m tired of doctors acting as though I am ignorant of my condition because I’m not a neurologist. As though I didn’t do the research, didn’t ask for multiple opinions, didn’t play the wait and see game until I was so miserable, so uncoordinated, so incapacitated that I couldn’t function. I’m tired of the air of doubt in my symptoms.

If I had a tumor, they wouldn’t ask if it was a “real tumor.” If I had MS they wouldn’t ask if those were “real lesions.” But somehow, because my condition isn’t well known, isn’t well researched (or frankly, researched at all), there is a constant doubt to my story, to my history, to my pain.

And it makes me doubt myself. And I hate that even more