In The Eye of a Hurricane

I dropped my dance mom basket this week.

The members of the youth theatre board on which I serve discuss wearing different “hats.” Because we are stage parents as well as administrative board members, we have to be careful to distinguish what role we are playing. If I am talking to another parent / board member and lamenting about something affecting one of my daughters I would be quick to clarify “mom hat” so that the person would know I’m not looking at it from a leadership perspective.

However, I have recently started thinking of my different roles in life as baskets I’m carrying instead of hats I’m wearing. The baskets have things in them. They are difficult to balance. I can carry more than one at a time, but the more items in the baskets, the harder it is to figure out how to manage.

I have a partner basket and a house basket. A home parenting basket. An Indy News basket for one job; and a migraine.com basket for the other, which has strings tying it to this blog and other advocacy work, and my illness. The migraine patient basket is a big one. A theatre parent / stage crew basket, tied to my advisory board basket.

John and I are working hard on our relationship, budgeting, the future, becoming independent financially, and our house. We started couples counseling, which is long overdue. But I think because I’ve been focusing more on my partner and house baskets, my others have gotten neglected. I admit to being a little overwhelmed, particularly this week because both girls are dancing in a big recital on Saturday, and we have long daily rehearsals for Cinderella, our summer musical. I have caught up with my jobs, but not the advisory board. I have been very attentive to the girls at home, and focusing on the musical, which is Zo’s first, and have totally neglected Star Style, the big recital. The dance mom basket was full to overflowing and it slipped from my fingers without me even realizing it.

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This is going to be X’s only year participating in Star Style, as she decided to take a dance class to sharpen her skills for musicals. And I forgot to order both girls a t-shirt, the only one that will have both their names on it. It’s too late. There MIGHT be extras in a few weeks but no one knows. X was so disappointed. I’m having a hard time getting over how upset I feel about it.

Another fail was also involving X, who dances very early in the first show. Because of some confusion she totally missed the start of her dance at the studio rehearsal last night, and when I encouraged her to just run on in and join she panicked and began to cry, and I was hard on her. She just turned 12, and I thought she was acting infantile, but later when we talked, she told me she definitely has a “thing” about being late and entering a room or a rehearsal after everyone else has begun. I think instead of being childish, what she was doing was having a legitimate panic attack, and I of all people should have recognized that and comforted her rather than being bitchy. I apologized quickly and profusely and we’re okay now, but again, that was a huge fail on my part.

Tonight we have a break from dance and I actually am not going to attend play practice either. Instead, I am going to get to go see Ron Chernow, the author of Alexander Hamilton, the biography which inspired Lin-Manuel Miranda to create Hamilton: An American Musical. My friend is driving so I don’t even have that stress to worry about, and we are both bringing our books to have him sign and are going to totally geek out. I can’t wait.

I hope that hearing Chernow speak will motivate me to get through the rest of this week. And I know that getting some time without any baskets at all, just being ME, will be rejuvenating, and maybe will help me improve my balancing act.

Sometimes, we all need moments of having nothing to carry at all.

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[Update: extra recital shirts were available much sooner than expected, but the price had been increased so I bought one for the girls to share. My dance mom BFF surprised us by purchasing another for us because “they should each have one.” She even bought the right size. Star Style went great. I made it through the week. I get by with a little help from my friends.]

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Traumatic Birth: Life After Near-Death (Updated)

They took her.

I was cut open and hastily re-stitched; paralyzed by a spinal block; bags of my own blood prepared and ready to transfuse if necessary, though apparently the physical danger to me was now over. The operating room was cold and sterile, glints of hard stainless steel, no friendly faces. My kind and efficient ob-gyn was tense and grim, the normally jovial Irish brogue of the doctor assisting her was quiet. The c-section had been unbearably uncomfortable, to put it mildly. The sensation of an anvil pressing heavily on my chest, compressing my lungs. My arms outstretched out and restrained, a flat crucifixion. An oxygen mask on my face.

They took her five weeks early. In my second trimester, I had been told after an ultrasound that I had placenta previa. My memory is hazy, but I remember not feeling all that concerned at the time. The Women’s Care practice of which I was a patient had formerly had midwives, with whom I’d worked when pregnant with X three years before. That pregnancy and birth had been “normal” if constant ER visits and hospitalizations for chronic, severe migraine can be considered normal, which of course it can’t. But X had been born beautiful and healthy after a standard, relatively short labor. Dr. B was present at the birth because neither midwife was available, and there was meconium in the fluid so X’s nose and mouth had to be immediately suctioned, but all was well. I was able to hold her and nurse her right away. All of us were in the same room together at all times. I was surrounded by family and it was a joyous occasion and my 6 pound, 7 oz perfect cherub of a baby was so pink and pretty with her dark eyes and wisps of hair. I had gone in around 9 am, and by 9 pm, my cozy and comfortable hospital room was filled with a circle of our friends from the coffee shop where we worked. They brought dandelions and chocolates. My lovely friend Megan had tears dripping down her face. There was so much love, and warmth, and joy.

So I trusted that same Women’s Care practice with my second pregnancy, and Dr. B and the other doctors there, despite the fact that the midwives had departed and were not replaced. My migraine disease responded to the increased hormones as it had before. This time Imitrex was generally considered to be safe for use during pregnancy, so I had more options for treatment, though I was often forced to seek additional help at the ER and hospital. When I was told about the placenta previa, Dr. B explained that the placenta was growing between the baby and the cervix rather than on one side, which meant that if it didn’t move up there was no chance of a natural delivery and I would have to have a c-section. I was okay with this. I was put on “light pelvic rest” which meant I shouldn’t lift anything over 20 pounds and told that I should call if there was any bleeding. I don’t think there was any particular urgency or danger implied. I was also told that my baby, which I already knew was another little girl, was breech. That news was delivered with the same tone. I walked out happy. She was doing fine. I thought, well, I have a three year old. I’m going to have to pick her up sometimes. I even thought, maybe I might prefer to have a c-section. I was conflicted about that, but I didn’t feel any trepidation or overt worry. I didn’t obsessively google placenta previa. I followed the pelvic rest instructions, usually.

The placenta did not move. Zo was growing at a steadier rate than X had in utero, and was already around 5 pounds in early Febrauary when the c-section was scheduled for March 17. I thought about buying a silly onesie that said “Baby’s First St. Patrick’s Day.” I worried a little about the c-section, but thought, how bad could it be? I liked having a certain date marked on the calendar, especially since X had been a week late. Sometimes, when going grocery shopping, I’d quickly lift little X into the cart. Despite the horrible persistent migraine pain I felt strong and immune to danger, especially the type of danger that could threaten my life or the baby’s. I should have done some research. Maybe I didn’t want to know.

Click here to read about placenta previa.

Three hours ago I woke gasping from a terrifying nightmare, probably brought on by the experience I wrote about in my last post: driving around an unfamiliar area with my daughter strapped into her booster seat behind me, blinded by level 10 pain, already having vomited, searching for a safe place to park. Zo alternating between reassuring me and plaintively asking if I was going to die. Panicking, unable to take her in my arms and calm her fears, unable to calm my own. In my dream I had lost Zo after picking her up from a strange prison-like school with many obstacles between my car and the line of children and their belongings. I had her by the hand, pink shirt and ponytails, smaller, still preschool size. And then I didn’t. I didn’t see her anywhere. And I began to scream, her name (which in actuality has three syllables) over and over, desperately. All the children had pink shirts and ponytails, but none were her, and the obstacles loomed up everywhere, and then I couldn’t breathe. I signaled frantically for all of the adults to help me, I couldn’t find my daughter, my baby, she was gone, and I couldn’t even breathe. She was gone. She was taken from me and I couldn’t keep her safe, or even myself safe, or properly communicate. My flailing hands, my pounding, terrified heart. My baby.

I pulled myself out of the dream as though surfacing through water, drowning. I took a huge breath and realized my nose was completely stuffed up when I hadn’t had a single cold symptom when falling to sleep a mere hour (I discovered) earlier. My daughter’s name was still echoing in my head, the tearing, shattering sense of loss, and I ripped the blankets away to find my six year old Zo sleeping soundly, her light brown bob framing her perfect face, hands tucked under one cheek the way she has always slept since she was born. She likes to sleep with us and often crawls into our bed in the middle of the night. She was right there, safe and breathing deeply.

Talking to J soon afterward, in tears, I realized that the experience at the airport had taken me back to my fear and helplessness and injury at Zo’s traumatic birth.

 

On Friday, February 13, 2009, X and I were with friends at a crazy bounce house filled building called Monkey Jump. Had I lifted X there, too? Maybe. The warehouse sized room was filled with screaming, careening, children in socks and their weary parents. I wasn’t feeling great. Not with migraine, but with more fatigue than usual, and something else. X had had a good time. Did I take her to my parents’ afterward? Because I think I was home alone when I felt something strange, an internal twang, which compelled me to head for the bathroom though I didn’t have to pee. And there, I found blood. Not spotting, but blood that dripped and puddled on the tile floor. “Call us if you have any bleeding.” Okay. On auto-pilot I sent J a text that I was bleeding, probably the placenta previa, and that I was going to call the doctor as I’d been instructed. When I did so, I was surprised at the response. Even at the sight of the blood, I hadn’t felt particularly alarmed at first (though perhaps I had gone into shock; these particular memories are very clear). This possibility had been handled so casually. Not “you could bleed out,” or “bleeding would indicate the placenta rupturing.” Certainly not, “you could die.” But my call and the news I delivered was handled like a dire emergency. And I did have an awareness of the bleeding… not stopping. Which couldn’t be right. Is this what they had meant all along by “bleeding”? I hadn’t imagined anything like this near deluge. Drips, spots, I’d thought. Were there varying ways you could bleed from placenta previa? I realized I knew almost nothing about what it truly meant to have the placenta pressing against the cervix during pregnancy.

I changed and dug up a large menstrual pad. I lay down and waited for J to come home early from work and take me to the emergency room, which is what we had been urgently instructed to do on the phone. I was surprised and beginning to get very scared, and angry with myself, and angry with Dr. B. Why had I not been made aware that the bleeding which could occur would be a sizable quantity? That I would have to immediately report to the hospital? “Call us” to me meant I could have some spotting and would need to make an appointment and probably stay in bed after that for the remainder of the pregnancy. That is what I’d thought, what the casual tone and lack of explanation had led me to believe, or allowed me to think. Instead it was an emergency, and the hospital, and bleeding which wasn’t stopping. It didn’t hurt. My baby was just over 5 pounds and I was at 34 weeks gestation. We hadn’t prepared the nursery yet, had no bedding, no supplies, though that didn’t even strike me yet as a problem because I was 5 and a half weeks away from surgery, right?

We went to the hospital, where they were waiting for us. I was hastened to a wheelchair and whisked to a comfortable ER room with more equipment than usual. Again, my memory is hazy here, but I was laid flat and hooked up to monitors, where it was determined that I was having contractions. Labor would have to be halted. The bleeding had to be stopped. I wasn’t going to be leaving the hospital. I sent a text to my friend Leah, at work, and asked her to pray for me. I don’t believe in a God that answers prayers but I wanted all the help I could summon. I was terrified.

Of course I know now that placenta previa is an extremely dangerous condition which can cause placental abruption, severe blood loss from hemorrhage, early delivery, congenital malformations, and even death for both mother and baby. I was told none of this. Perhaps my migraine situation had been considered, and my stress level. But what you don’t know can hurt you. And I still believe that it was carelessness and not its opposite which caused my lack of education. In 2009 I was not yet blogging about migraine, advocating for myself, and accepting that I would be chronically ill forever. Now all that has changed. Now I would never accept a diagnosis without asking a lot of very specific questions and doing my own research, as my trust in doctors has been betrayed too many times. This change in my attitude about illness and taking charge of my own body and health was partially because of the trauma of that weekend, one of the most important of my life, Friday the 13th through Valentine’s Day to President’s Day 2009.

I was given medications and admitted to a dark, quiet corner of the maternity floor. The labor and bleeding were stopped, but I was on strict bedrest and barely allowed to move. A catheter was inserted and in order to relieve myself “the other way,” which they needed me to do, I had to use a bedpan while lying down with a nurse present in case the placenta ruptured in the process. It was the most humiliating experience of my life. I couldn’t and didn’t want to see any humor in it. I will never forget the kindness of that nurse and the bond I felt with her, though I no longer remember her name. Years later, she walked into my place of employment and I burst into tears before I even knew why. At least, that day, I was able to tell her what her care of me during some of my darkest days had meant.

**(Update)** Since first publishing this post, my mom has filled in some of the gaps in my memory. Those are added in asterisks. 

J and X visited. They brought me Valentine’s Day gifts. The debate began about Zo and whether to keep her “safe” in the womb or to deliver her by emergency c-section immediately to minimize the risk to me. Dr. B had always seemed laid back and was often laughing, so her seriousness and grim demeanor when she would examine and discuss the situation with me were even harder to miss. I was at huge risk. The baby was at huge risk. **The nurses referred to me as a “ticking time bomb.** And Dr. B also didn’t seem surprised that it had occurred. If it was so likely, why wasn’t I told? Why wasn’t it explained that lifting my daughter could actually quite literally kill me instead of simply coming across casually as “not recommended”?

Fortunately Zo was 5 pounds, 5 ounces. I had a special ultrasound which revealed more details and that was truly a joyous moment within the constant terror. I saw her wiggling on the screen, head still down, but healthy, with well developed lungs (I don’t remember whether they used steroids to try to develop them further but it seems like they did). **She did not need steroids, and the ultrasound showed she was taking “practice breaths,” a stage of in utero development indicating fully developed lungs.** It was decided that she could be safely delivered but they wanted to wait as long as possible, and as long as possible turned out to be Monday. I would be exactly 35 weeks gestation, making her “pre-term” instead of “premature.”  So I lay flat on my back and waited, terrified and uncomfortable. I did have one more small bleed which convinced the team even more that she needed to come out of there. Dr. B explained that the c-section would be dangerous because just a tiny flick of the scalpel to the placenta could cause me to hemorrhage. The blood was prepared. Another doctor from the practice would be assisting, a pediatrician on hand, a life flight to a Toledo neonatal unit lurking nearby. They seemed far more worried about me than the baby. I think J felt the same way.

I was wheeled to the operating room. J would be joining me immediately before they began. I was so cold. The anesthesiologist was not kind, although I can’t remember in what way; I just remember being nearly naked and shivering as the spinal block was administered to numb me completely from the middle of my back down. I was laid on my back and strapped down. The sheet was dropped in front of my face to block my view as the bustling, tense doctors and nurses prepared.  I had had surgeries and lots of medical experience and had assumed a c-section would not be horrible, but nothing prepared me for this experience. Something about the spinal block caused me to feel a huge weight on my chest and I felt I couldn’t breathe. Tears streamed down my face and puddled on the table underneath my head. J came in, dressed in scrubs. “Help me” I whispered. “I can’t breathe.” An oxygen mask was procured and I still felt the blind panic. I asked for anti-anxiety medication and I felt no change after it was administered into the IV. J was behind me.

Surgery began. I heard soft urgent voices and felt more pressure. I knew they had lifted my uterus out and were trying to remove the baby from it without touching the dangerously connected and positioned placenta. She was out. One part of the team whisked her quickly across the room. There was no noise. The doctors were still urgently and carefully removing, replacing, stitching, but the baby. Where. Why. The troublesome placenta splashed harmlessly into a metal basin. I tried to lift my head to see around the sheet and saw brief glimpses of a tiny and gray creature who made no sound. She wasn’t THAT early. Over five pounds. Why wasn’t she crying. The frantic figures in blue took my blue baby away and she was gone.

They took her.

J was given the choice to stay with me or go with the baby. I remember urging him to go. I remember someone saying “It will be okay” and believing them because I had no choice. All I knew is that they hadn’t even shown her to me. I hadn’t heard her cry, and from my pinned down, blocked vantage point she hadn’t looked good.

Mom was with me. I remember thinking she didn’t seem panicky. I remember her being more nervous about the meconium staining at X’s birth. I was wheeled back down the hallway. The tiny, ill-equipped neo-natal room was to the left, where J and the baby were. I strained to see through the blinds blocking the windows. I still couldn’t really move. Terror but then inescapable grogginess. I had been stripped bare and ripped open, quickly put back together, but felt my heart was outside my body and it had stopped beating. Back in my comfortable new recovery room the darkness descended and, mercifully, I was out.  **This is only a trick of my self-protective mind. Mom says I never lost consciousness. I was hysterical.**

J’s account of his time with Zo plays in my head like a movie I can’t quite see. I imagine it with beams of light shining from – where? and the nurses like loving angels. All I experienced was a seemingly dead baby being taken away. J saw her struggle to survive, her fight and will to live, and the care of those professionals who had seemed so cold and faceless to me in the operating room.

Immediately Zo was placed under an oxygen hood. Wires attached, IV lines inserted, with little response from a tiny blue baby with no fat on her body to protect her. I believe that the air ambulance techs were rushing inside with their equipment, preparing to rush her to a better equipped facility to the north. J, stunned and horrified, willing his miniature second daughter to breathe, just breathe. I feel like they allowed him to touch her but I’m not sure, and he was so traumatized by the whole experience that I’m not going to ask him right now to re-live it.

“Breathe. Just breathe. You can do it. Breathe.” Talking to her, willing her, knowing it might be no use. Maybe only a minute went by from her removal from the operating room to her placement under the hood and the gasp and flutter as she fought to the surface of her harsh new environment, and while the nurses worked, opened her mouth and inhaled. And without extreme measures, before the reserves arrived, just a little extra help and pressure from the hood and she did it on her own. My baby lived.

J describes the response in the room as a huge burst of joy and near disbelief. Her quick rallying was unexpected. She wasn’t able to cry for some time. Even the poking and prodding, needles and tubes and wires and probes didn’t provoke wailing and protest, but she breathed. She breathed. J sobbed, the nurses laughed, and they did something unprecedented for lawsuit-weary and wary hospitals: they allowed J to take a video of Zo’s first live moments with a small video recorder he’d had in his pocket. They were calling her tough, so strong, a miracle baby. Born blue, then breathing on her own.

  
The first time Zo cried was when they bathed her.

J brought me the video before they could allow me to see her. He stood next to my bed in tears, and was able to show me the miracle of a breathing baby. She was okay, and I had no awareness of the death and fear and rebirth J had experienced before he began recording; I only had the sensation of that awful operating room and the lack of a baby’s expected cry which had settled into my soul and would never leave. J removed the paper cap which he’d been told to place over his hair. His dark curls had turned about 15% gray since before putting the cap on. He says that as soon as he took the cap off I gasped “Your hair! It turned white!” He was 28 years old. I was 35, and appeared far younger. I date my own more rapid aging to that day as well. We would never be the same.

Holding her for the first time was transformative. I don’t remember how soon she was able to stay in my room with me, but it didn’t take long. **Mom says I got to see her around 2:00 pm (the c-section was at 8).** Her heart and oxygen monitors never sounded alarms other than to indicate disconnected or twisted wires. I was able to nurse and my amazing lactation consultant helped me to pump extra milk in order to supplement her feeding without the use of formula. She would latch, and I would insert a tiny tube into her mouth as well. The fact that we were able to do this was another amazement to the doctors and nurses, who fully thought Zo would refuse to nurse or be unable to demonstrate a sucking reflex.

  
My young and pretty family doctor, who was struggling with her own chronic illness which would soon cause her to retire from medicine, came to examine us and kept blinking in disbelief. “You can go home,” she said, astonished. “You don’t even need to take a heart monitor with you. Neither of you needs to spend any additional time in the hospital. She’s fine. You’re fine.”

But J and I weren’t really fine. We were joyful and relieved, but damaged.

And the trauma of the recent day when I was again helpless and unable to protect Zo brought all of this back to me in the guise of a terrifying nightmare. But I was able to wake, and see her there sleeping, my strong, tough, spirited miracle child, and I decided to purge myself of the experience in writing for the first time. 

They took her away from me and I couldn’t look at her face or follow or even move. But she lived. And so did I. 

**In talking with other traumatic birth survivors, including a good friend with the same doctor / hospital whose experience seems even worse than mine, I have learned it is fairly common for c-section babies, especially pre-term ones, to not breathe/ cry because their lungs don’t get exercised while being pushed down the birth canal. Therefore, no matter how it seemed to J and me, and no matter how relieved and happy the nurses were, my 5 lb, 35 week baby was no “miracle,” just a slightly worrisome statistic and one who happened to rebound really well. But I was catastrophically under-informed. I should have been told there was a chance she wouldn’t cry and that I wouldn’t be able to see her right away. I certainly should have been told more about the placenta previa and the danger I was in. In any case, this is my experience as I remember it. And Zo will always be my miracle child. 

  

But You Won’t.

I’ve been absent. I don’t really know what to say about it. While my participation in the CGRP Study has been amazing, and I have longer pain-free periods, somehow I end up in the ER more often. Everything in my life is changing. J had to resign from his job over unfair labor practices and while I believe he has a good plan for finding something new, I’m terrified. I don’t want to rely on others anymore for the things we need. I want my daughters to feel safe and secure. My baby is about to start first grade, a milestone which was extremely hard for me when I went through it with her older sister. Soon, I turn 42. I seem to be losing friends, or at least losing the closeness I shared with those friends, faster than I can make new ones. Who am I kidding? There are no new friends on the horizon for me.

 I want to feel motivated. I am still volunteering at the museum, working on my Etsy shop (www.Etsy.com/shop/WindInTheDoor)  and a member of our Youth Theatre advisory board, all activities I find worthwhile and rewarding. I thought J and I were going to go back to school (together) but scrapped that idea when a week of playing various ghosts at Hogwarts Camp and then a theatre conference landed me in the ER, a migraine from which I still haven’t fully recovered. Attending classes and studying doesn’t seem to be in the best interest of mollyfing Medusa. So I am still collecting meager SSI and have no idea when I’ll be able to work again. The Etsy shop is doing okay, especially for having been open only 6 months, but I wish it would do better so I could feel I’m contributing something.  I am doing everything right with the shop, and am continuing to try to do it better, but right now everything feels hopeless. 

The kids are growing up. The kittens both died. The house looks like a bomb hit it. There’s no way I’m making it to the County Fair this year. I’m having a hard time getting X interested in practicing her monologue for the fall play which means she might not get a part and will be beyond devastated. Zo’s behavior is getting tougher to deal with as she can’t handle her own negative feelings without trying to hurt others emotionally and her extremely sensitive sister exacerbates that issue. J doesn’t have a job. I can’t have a job. I can’t even get out of bed right now.  

 
Welcome back, LadyMigraine. You suck.

general update.

I have had an unrelenting headache for three days. It isn’t too severe, but nevertheless pricks and pokes at me and brings accompanying aura, allodynia, and irritability. I’m not happy about it. For some reason, nothing I take is working.

I had my last appointment in Ann Arbor yesterday for the double-blind phase of the CGRP chronic migraine study. My friend who is the research nurse asked the questions, had me fill out all the surveys in the diary, did another EKG, took a bunch of blood and a urine sample. I got a free ice / warm pack and a water bottle from the drug company; a $10 gas card; and a check. J ended up believing that I did receive the real medication and not the placebo, because while my headaches stayed just as (or more?) frequent, they decreased in severity. At my next appointment, in a week, I will begin the Open Label phase of the study, where I will receive the real drug for sure (I won’t find out what truly happened during the double blind phase until the study is totally over). The unfortunate things: the open label phase was supposed to be extended from 10 months to 5 years, and it hasn’t yet been; also the open label phase uses a lower dose than the double blind phase. So if I was getting the real drug, this “improvement” over the last 3 months is the best it is going to get. The positive news, and really unbelievable to me, is that I will still get paid to participate.

Which brings me to the other significant topic right now: money. J got very inspired recently to push and push until he found a more lucrative position, one that could really support us. He has a lot to offer, and a pretty general Master’s degree, so to me, this seems very doable, he just has to not give up. The first attempt failed but only because the CEO said “You’re too good for this job,” and pointed out the pay would be lower than he’s getting now. Currently, he is working within his current agency to propose a business model for keeping them afloat, with him as the developer; however we don’t have a lot of hope in this area because things tend to move so slowly. There are two other private sector positions he is looking at. We won’t stop until this goal has been achieved.

In the meantime, we are working again on Migraine365 and my Migraine Diaries project. The Migraine Diaries #1: Diagnosis [1981] is available on Amazon Kindle now for $2.99.

As far as my health, I stated in my entry “Comorbid” that I really thought I had another serious health issue going on, possibly an auto-immune disorder like EDS or POTS. But, I noticed that after 3 days of taking my heart rate every morning upon waking and getting up, the significant increase upon standing stopped. So it seems to be something that happens only when I’ve been bedridden for a number of days because of migraine. I did get tested for everything by Dr. S, and no auto-immune indicators showed up. I was relieved but puzzled.

In thinking over all the symptoms, I think that what is going on is increased anxiety. It’s something I’ve noticed before when my migraine pain has decreased. In 2002 when I received my first Botox treatment, my improvement was so significant that I had no idea what to do with myself and became depressed, I think both from so much extra time being available to me (this was before children) and because my serotonin needed something to do. A different sort of rebound effect. This time, we have a lot going on to cause anxiety: very little money, a preteen worried about extra standardized testing, both girls’ birthdays and the accompanying social and financial stresses, our kitten having feline leukemia (no symptoms yet), J’s PTSD bringing mood struggles. When my headaches are bad, I’m restricted to bed and sleep, able to feel only my pain as we experience fight-or-flight survival of each day. Instead, now, I am experiencing all the anxiety that comes from actually living a life. A difficult and stressful life.

I see Dr. Mitzi next week, and I am planning to talk to her about this, perhaps reducing my pain medication and adding something for anxiety. I want to be able to live my expanded life in balanced enjoyment!

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Top Ten Reasons To Buy A Migraine365 Shirt

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I’m showing my age here, aren’t I? When I went to college in the early 90’s top ten lists were all the rage, thanks to David Letterman. I must have had 3 or 4 different t-shirts from my university, my honors college, my dorm… all top ten lists. And pretty
lame, really. But after a lot of really depressing entries I’m going for humor here, lame and dated or no. Ready for some desperate nostalgia?

TOP TEN REASONS TO BUY A MIGRAINE365 TEE:

10. Because lord knows, you probably don’t have enough white printed t-shirts!

9. But seriously, do you have any with a logo as cool as this one? As a friend pointed out, it says so much with so little:

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8. There just aren’t many migraine products out there for us, especially if you’re tired of purple and awareness ribbons.

7. If you aren’t a migraine sufferer, you won’t feel weird wearing it. The logo and title are for the book project, meant to appeal to everyone (“a story about life”). You’ll dig it the most!

6. Apple recently used a similar image for its iOS 8 Family Sharing plan, so you know how very hip you will be.

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5. The shirts are high quality Gildan brand 100% cotton. No funky too-high collars or too-stiff / too-thinness. My mom has a Gildan “Live United” shirt and it is SUPER nice.

4. At $20, not the cheapest tee you’ll ever buy that’s for sure, but most of the funds will directly support my Migraine365 project, helping with needed supplies like paper, watercolors, artists’ pens and pencils, and also the amazing amount of time and effort spent on each day’s piece.

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3. The Winter holidays are fast approaching! What an incredibly unique Hanukkah, Christmas, Solstice, or Festivus gift you could present to the art lover or migraineur or anyone in your life!

2. This limited edition shirt will only be available for THREE MORE DAYS!!

And the number one reason to buy a Migraine365 shirt…{cheesy drumroll}

It would make me and my family so very very happy!!

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Please follow this link to Ink To The People to purchase your Migraine365 shirt now!

xoxo
~elizabeth

Day 27: Horse Lessons | Bank meeting

I love Fall, but 60’s and cloudy is a shitty combination. It’s chilly and damp, damp that seeps into your bones, without real rain, but it seems to always be threatening. I HATE when it’s hot, I do. But the weather the last few days seems wrapped up in how I’m feeling, which is dark, like my very soul aches. And I’m sick. It’s one of those times where I don’t know whether I have a bad cold, some other type of virus, or a weird migraine. At least I know it’s not side effects, since I haven’t started any new meds… although I did miss a couple doses of Cymbalta last week, and a couple doses of Periactin over the weekend. I was in bed most of the day yesterday and most of the day today.

J had the meeting at the bank this morning to discuss refinancing, which is the main thing that came out of our divorce / bankruptcy discussion last month. Unfortunately, the dude told J that no drastic measures could be taken regarding the status of our house and mortgage because we’re in good standing with the BANK. But, we also can’t refinance because J was delinquent with a student loan recently. I don’t understand it and just want to curl up and cry and never get up again. We DON’T HAVE ANY MONEY. So of COURSE we have to choose which bills we pay. I sent him with my Disability, Medicaid and food assistance info as well and of course none of that made any damn difference. J is supposed to call a few numbers to try to get those items removed from our credit report. But in the meantime, half of his salary still goes to the mortgage.

We are working on this Migraine365 project with the best of intentions – for awareness, to help other families going through similar struggles – but also to maybe make money in the future. Money we can be proud of and feel good about. We hope to put it on Kickstarter and get it published. But because it is a page a day, the book won’t be completed for 11 months. In the meantime we have prints on etsy for $10 and the t-shirts.

Here is yesterday’s page:

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Text of Page:
09.14.14 | Day 27: Horse Lessons | Migraine365 | “I wish you had seen it Mama, I cantered!” -X | I wasn’t feeling well, but X riding is scary for J so I took her to lessons. Sat in car. | I listened to music. When the lesson was over, the car WOULDN’T START. | I couldn’t get out of the car. It was like I’d forgotten how to function in the real world. | I felt so dumb. I cried. They helped + we drove home. |

Making The Invisible Visible [365 Days of Migraine: Day 17]

In 1998, when I got my fifth tattoo – actually my fourth AND fifth, I got them at the same time – my dad said I might “have a hard time finding a husband,” and my mom developed a theory. Her theory had to do with my migraines, and how my new passion for getting tattooed might relate to them, considering the amount of pain both involve.

At that time, I hadn’t considered that there might be a correlation. I was getting tattooed because I loved doing it, I loved the resulting permanent art on my skin. I even enjoyed the pain, and still do, because it is different pain. It is pain I control, pain I pay for. Pain that leaves behind a visible, beautiful mark, which I have envisioned and designed. I consider my tattoos a road map of my life, a record of my experiences, my own hieroglyphics.

It’s true that it is difficult being afflicted with an “invisible” illness, by which I mean there is no obvious outward sign of my daily pain. There are small signs, of course. A sunken, inward look to my eyes; pale, sallow skin. A hesitation, a tiredness. Lack of sparkle. But no wheelchair, no disfigurement. It does make it hard to communicate just how crippling my illness is. I am disabled, the government has said so, but the very word “disability” calls to mind a physical lack. In my case, if someone didn’t know me at all, he would have no idea I’m in pain.

And the PAIN. Searing, burning, radiating. Above a 4 on the ubiquitous 1 – 10 pain scale, I want to lie down. Above a 6, I don’t have a choice. The last time I went to the ER, in May, the pain was so severe I can’t even describe it in words. I couldn’t get into my “zone” and lie still, I had to thrash and scream. The cluster headache community calls this “dancing.” When the pain finally faded away, there was no outward trace. I had some shadow pain, a bruised feeling, but it was almost surprising to look at my face in the mirror afterward and see my normal, pale skin; my own familiar, wide eyes, shocked by what I’d just experienced, but otherwise the same.

I don’t necessarily feel like I would want to have the signs of my disease be more physically obvious. Who would want to stick out that way, to be whispered about, stared at? It would help my illness to be taken more seriously, that is for sure, but at what cost? When I want to feel like a normal person, I really want to be able to do that, and I can.

Almost 20 years after my first tattoo, I can no longer work due to the severity of my migraines, and I can no longer count the pieces of art on my body. I have recently acquired my first sleeve, made of poppies and swallows. Occasionally I am pointed at, but it is because of my artwork, not my ailment. I think my mom was right. I endure so much invisible pain, agony which leaves nothing behind except shock and exhaustion. I want evidence of my trauma. In being heavily tattooed, I am forever marked. I have something to show for my pain.

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This Migraine365 page is the first one for which I asked J to follow my blog content, rather than the other way around. I knew I wanted to write about my tattoos for the Headache Blog Carnival, so I sent him several of my favorite photos and this was what he came up with.

Thank you for reading!