Flashback Friday

I stayed in bed all morning. Yesterday I had to give myself a Sumatriptan injection first thing; the morning before I’d needed to take a tablet. No migraine this morning, but maybe postdrome. In a sort of desultory way I scrolled through Facebook. I don’t always check my “On This Day” memories, but I did, even going so far as to read the blog post that came up because I remember it being significant.

When I went downstairs, I had a very uneasy, not-quite-anxious, not-quite-depressed feeling, an ache below the rib cage that made me feel helpless and vulnerable. My depression has been very well controlled lately, so I felt like I needed to figure out the source of this. Postdrome? Trump angst?

I finally realized maybe it was from reading the blog entry.

It was titled “WWED: What Would Elizabeth Do?” and was about the fact that I didn’t like who I’d become in the year since quitting my job and in fact barely knew myself. At the time I wrote it three years ago, Dr P had only recently dumped me as a patient after I bared my soul to him. I hadn’t yet seen anyone in my neurologist’s office, so I was without medication. It was before my first CGRP trial, before Dr Mac and Dr Mitzi, right when I decided to taper off Cymbalta, before John got his social work job. It was probably one of the lowest points of my life.

In the entry I described my crazy, desperate run through the hospital parking lot after Dr P so ruthlessly attacked me. I’d forgotten that I’d been sobbing, tore away from J and  fell, scraping my hands and knees. Reading the descriptive prose I vividly remembered how worthless and hopeless I’d felt, and scared I had been. It’s hard to explain how much being rejected or misunderstood by a doctor feels like the end of the fucking world for someone with a chronic illness. I had literally nowhere to turn.

That helpless, hopeless feeling today morphed into an uneasy vulnerability. While I am much happier and more fulfilled now, with new friends, new activities, new jobs, I am unfortunately at a bit of a crossroads again with my medical care. J has a fantastic job now at our local state university, as a full time instructor, which is another reason for my increased satisfaction now as opposed to three years ago. However, one of the most attractive features of a good job, for me, is the health insurance. I had been on Ohio’s expanded Medicaid, which was life-saving, but limiting, so I was excited to be on regular private insurance again and am particularly grateful for it now that the NOTUS is trying to repeal all aspects of the ACA.

But there was a paperwork issue. J filled out all the many many pages required for our family to be covered, and it all went through fine. What he didn’t know is that almost immediately, he would have to fill out yet another spousal form for 2017, as he will have to every year. He was behind on checking emails, falling into the “ignorance is bliss” ravine that so many of us do when overwhelmed.

On January 1, my coverage ended. I haven’t had insurance since then. J is trying to get it worked out, but because the open enrollment period had ended, now the HR people need my Disability paperwork, my Medicaid and Medicare paperwork. Which J found and gave to them. And then he didn’t hear anything. He had to go to his dean for help in speeding it up. This week, he still hasn’t heard anything new about the progress. Bills are piling up. The uncertainty of not having coverage constantly makes me feel on edge. Scared.

I finally have an appointment with a new family doctor in March, Dr. C. My spoonie friend Julie, who is local, found him first, having read reviews that he’s excellent with complicated cases. But again, uncertainty. Fear. My wonderful, sweet pain specialist, Dr. Mitzi, who refused to conduct pill counts and seemed so concerned with me personally, has apparently caved in to the federal pressure and taken an extended leave of absence. She does have a nurse practitioner, Judy, but she is considerably less warm and makes me very nervous. They are trying to find a replacement for Mitzi, but I have read enough horror stories from people in my support groups that I know it’s a possibility the new doctor will be a strict asshole who will not want to keep prescribing to me. Uncertainty. Fear.

But. The pain clinic isn’t closing, and Dr. C seems very promising. Even without insurance, if worse comes to worse, I can pay cash. Things with Dr. M (the neuro) are going okay. I haven’t had to go to the ER for six weeks. J is doing well, the girls are doing well. I have my work for migraine.com, which is a dream come true, and BG Independent News, which is so great I would never have fathomed my involvement in such a thing. Working with journalists I’ve always admired, in a field I chose for myself twenty years ago. Lucky. I’m lucky.

I have to let this false fear wash away. I have so much that is good right now.

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My girls on top of the Cape May lighthouse. X, Zo, & K, June 2014

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The cast of The Best Christmas Pageant Ever, December 2014

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Zo & me after her first Nutcracker performance weekend, Dec 2014

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Me at the Historical Center, where I frequently volunteered from 2014-2016

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Part of our theatre family. I’ve been on the advisory board since early 2015.

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Me & J at the Chamber of Commerce dinner with BGIN last month

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My migraine.com profile. I will be going to a conference in Philadelphia in March!

Mix Tapes: The Buckle and The 8th Floor, 1997

I recently got a 2002 RAV4 from my mother-in-law, and I have never loved a car so much. I have always wanted a small SUV, and she kept it well maintained, so even thought it has over 200,000 miles on it I feel it will continue for many more.

It also has a tape deck.

Earlier this year I bemoaned my lack of ability to play all my old mix tapes, which were like an art form for me. A friend had an extra boom box which she promptly delivered, and I imagined writing a new blog post for each new mix tape I rediscovered.  However, that never happened. The boom box sits in my room, with old dust and new dust.

A car tape deck though is a different matter. We all have to drive. I like to listen to music while I drive. I waited awhile and then, last week, I grabbed some tapes from my collection and popped the first one in, unlabeled, which turned out to be a taped-off-the-radio George Michael concert from the FAITH era and pieces of favorite albums (The Beatles, Led Zeppelin, and sadly, Boston). The tape survived being flipped and re-wound, and played well, so I listened to a couple more. I posted on Facebook about them.

A friend (one of those FB friends I’ve never met in person) commented how much he was enjoying my Tape Updates, and I thought again about possible blog posts. Facebook seems much easier, less time consuming. There is also the privacy of those for whom I made the original mixes to consider. But this particular tape, which was made just for me, Mix Tape #4 according to its Facebook post order, definitely needs its own blog entry, as it represents such a personal and important crossroads for me, along with its sister mix, “The 8th Floor,” made soon afterward.

The mix is called “Buckle Songs”.

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In February 1997, I quit my job at STAGE Stores Inc, which had been Uhlman’s Department Store until the sale / takeover. It was not nearly as enjoyable as Uhlman’s had been, particularly since, as an old fashioned Southern chain (one I learned during the presidential race of 2012 was owned by Mitt Romney), they told me I could no longer be manager of the Men’s Department. Because I’m a woman. And my fancy gold plated name tag with my full name on it was replaced by a cheap one with a sticker that said simply “E. Roberts.” No first names.

I’d also dated a co-worker there with disastrous results (a man hired to work the Men’s Department!), and though he’d quit already, I had fallen hard for him and being back there was rough. I had graduated from college in December. I was ready to go. I spread applications to retail outlets all over BG and Toledo, because working retail was all I knew, and I liked it. Who called? The Buckle, a trendy clothing store at Franklin Park Mall, a 40 minute but very familiar drive north.

Because of my degree and experience I was hired to be a sales associate on track to become Assistant Manager. Tish, the manager, was very like other women bosses I’d had, though younger. She was sharply enthusiastic, and nerve-wracking. We were on commission. We were expected to “build on” sales, to not just help people find what they were looking for but also talk them into buying more. We were trained to look out for the types who were easiest to do this to. We got a 40% discount on clothes and could only wear what was purchased from the shop. My collection of Doc Marten boots and shoes, and Lucky Jeans, and thin, cheap, trendy tops would become monstrous. We’d all have “hold” piles and when paychecks were issued there was a long line to purchase. My sales were never high enough to begin the process of promotion to Assistant Manager, though I was a key holder, as I’d been at Uhlman’s / Stage. My migraines at this time were occasionally disruptive but I didn’t have to miss so much work that they were a real problem. I wouldn’t become chronic for ten more years, though I was definitely heavy episodic.

My relationships with my co-workers were pleasant, but odd and uncomfortable for me. Another key holder had dubbed The Buckle “The Meat Market of the Mall” as everyone who worked there was rather astonishingly good-looking, and easily classifiable into a “type.” My favorite co-worker was Jeff, my first flamboyantly gay friend, who was funny and sweet and danced like he was in a musical whenever “It’s Oh So Quiet” by Björk came on. There was the guy I had a crush on, Jake, who looked just like a Jake and was therefore not really my type at all. There was also Vinny, I think his name was, unless I just called him that in my head. He was sort of a combination of Keanu Reeves’ Ted and Alan Rickman’s Severus Snape, in retrospect. He had long shiny dark brown hair and loved the Wu-Tang Clan and tended toward the more “urban” line of Buckle clothes like JNCO jeans. The girls  were young and beautiful, from the one with long flowing wavy blonde hair to skinny, alternative types. I had no idea where I fit into this schema. Since I’d been hired into management but stalled, I suspected I fit nowhere.

The best part of this job was probably the music. We had long compact disc playlists to choose from, and they were all good, introducing me to some new things and re-affirming my love for The Beastie Boys, Björk, Liz Phair, Radiohead, Depeche Mode, Beck. Some of them were more club oriented and therefore totally unfamiliar, and I was able to track down my favorites for the mix: “Whoever You Are” by Geggy Tah (“All I wanna do is to thank you, even though I don’t know who you are / You let me change lanes while I was driving in my car”) and “(C’mon Ride It) The Train” by Quad City DJs. When these songs came on we would dance and sing unabashedly. There were 1980s mixes as well, both alternative and dance styles.The Buckle, not a bar or dance or wedding, was the first place I ever saw the “YMCA” dance being acted out. Working there felt more like working at a club, but instead of drinks people bought clothes, shoes, and belts. Despite the underlying competition of being on commission, we all got along pretty well, though the social and friendly environment was not extended for me outside the store as it probably was for the others, who were mostly one to five years younger. I was about to turn 24.

This was the time period of a major self-destructiveness on my part. My life, private and professional, was a mess. I had dumped Craig, my longterm on-and-off boyfriend, the previous fall for the last time to date Hazelwood, the guy from Stage, who had dumped me over the phone right after Christmas. The longterm boyfriend relationship had been a seven year tempest of fighting, reuniting, being unofficially engaged and then breaking up and getting back together, hanging out and hooking up without commitment, though every time, it felt like coming home. I had no idea what I wanted to do with my life, and who to do it with. I thought I wanted to be with Craig, but I always thought that when we were apart. And I knew the Buckle wasn’t the right place for me but had no motivation to do anything about that. So I did stupid stuff like driving around the parking lot during lunch breaks with Vinny, in his car, blasting music while smoking weed and menthol cigarettes like that was our actual job before returning to work the rest of our shift. I let some stranger “pick me up” at the store, and dragged my friend and her boyfriend to his house, which was a glass and white monstrosity in northern Toledo at which he turned out to just be crashing. I remember there was weed spread all over the glass table in the living room, and I suspected there were other drugs tucked elsewhere. We smoked this weed. I went back by myself next time. The guy, Derrick, was a drifter with a temporary type job, but was actually pretty clean and cute and ended up not being a crazy asshole or rapist or killer; he didn’t slip Rohypnol in my drink, didn’t poison the food he made for me or get angry at my “everything but” reticence. In fact when I declined to see him again he seemed extremely crushed. I got lucky there. I also invited a random kid into my apartment when he knocked on the door looking for someone else, and smoked his weed too. I smoked so much weed belonging to strangers and near-strangers that it is astonishing I never stumbled upon any laced with anything.

I know this “risky behavior” is somewhat laughable. Even in the late 1990s it was known to everyone that marijuana is spectacularly safe. I didn’t fuck any of these guys, I didn’t snort cocaine off the glass table, I wasn’t shooting heroin. But for relatively cautious me, these risks felt huge, and I had the tantalizing spectre of my luck running out, the possibility always on my mind. I wanted it to run out. Because I was fucking miserable. And I needed a Deus ex Machina of an overdose or severe injury to derail me. I ended up derailing myself, but it was like a quiet, tipsy drive off a foggy road into a ditch rather than a plane crash.  Oh yeah, I drove home drunk from Toledo too, but that was later, when I was working for Family Video in Sylvania, and we used to go to a nearby dive bar afterward, where my newly tattooed still young body was obviously tantalizing to my middle-aged average male supervisors who enjoyed buying me jello shots. There, I was in transition, trying to re-build self esteem but letting myself be objectified, my tattoos not allowed to show at work, the “Adult” section behind a red curtain in the back. Family Video was the final frontier of my displacement.

First, still at The Buckle as my birthday approached and a Back To School fashion show was being organized, I had to ask Jake to attend a party with me, have him say yes and then totally blow me off when the day came, after which I drove home in a thunderstorm sobbing and ended up in the cemetery, taking some pills and quitting The Buckle by phone from a hospital bed. I also arranged an interview at Family Video from the hospital.  Jake blowing me off was a last straw, the hiring of a new Assistant Manager another last straw, the memo we all received about a company issue called “Familyocity” where you cared about your co-workers too much to compete with them or fire them was the last last straw. Oh, and the fashion show kind, handsome Brent put together that I was supposed to participate in with all the hot youth that I couldn’t actually bear to imagine. Me? Strutting down a catwalk in the middle of Franklin Park Mall? I was realizing NOPE fast. Brent was the only one to call the hospital to make sure I was okay. Brent, thank you. Jeff, who had already fled to work at Sufficient Grounds with Sarah, another favorite who was also someone I could have been friends with outside the Buckle world: I wish we had stayed in touch.

The mix I made right after getting out of the hospital is a nearly laughably typical late nineties depression mix with Nirvana, Soundgarden, Fiona Apple, Natalie Merchant, Depeche Mode, and the Cranberries. It took a number of months to put my shattered self back together. The first step was applying for a job at Grounds For Thought, which was just downstairs from my apartment. The Buckle (a symbol for the more important events of graduating from college, being dumped and losing Craig) had broken me, and as the pieces started to fit back together, I became the me I would be for the rest of my life. I was poised on the edge of meeting John and all the people who would matter in the years to come. When I was promoted to full time Night Manager at Grounds in October of ’97  I was able to finally quit Family Video, where they were quietly disapproving and suspicious of my “moonlighting” at a coffee shop. I worked at Grounds For Thought for almost a decade, through meeting and dating John, getting married, getting pregnant and having X, and going chronic.

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My “Buckle Songs” mix contains mostly the happy, dancy music that made us squeal and start dancing in place no matter what we were doing when the songs came on. Some of the songs reflect my frenetic despair. There are a few songs from Baz Luhrman’s Romeo + Juliet, which was important to me at the time. It started with Urge Overkill’s “Girl, You’ll Be a Woman Soon” from Pulp Fiction and ended with “Make It Home” by Julianna Hatfield, which had been in the Christmas My So-Called Life episode when Rickie was homeless. As I found more songs from our actual Buckle playlists I replaced throw-away songs with more authentic ones, so it was edited a few times over the next year, much like my actual evolving life.

 

**Next morning update: While listening to the Buckle mix while driving everyone to school (at three different times), a memory suddenly came back to me of another co-worker I’d totally forgotten about, a beautiful young woman of color who vividly called out the Presidents of the U.S.A. regarding the real meaning of their song “Peaches” and claimed joyfully that she was going to wear a t-shirt saying “KILL WHITEY” to get out of her impending jury duty.  I realized that the Buckle staff were much more diverse than I initially remembered, though undeniably everyone was very attractive. My friend Sarah, whom I’m recalling a little more clearly now, was a short, adorable ginger with a nose ring; not waify and blonde or heroin chic. This was the most unique group of people I ever worked with, which I sought to re-create when I began hiring at Grounds. And I still say I had the best Grounds Crew there ever was and ever will be again.

We Are Standing on the Edge…

I just basically want everyone to know that my family and I will be okay. Everyone has things that go wrong. Everyone gets sick. Everyone has trouble now and then with government red tape. People change jobs. All of it is possible to deal with and all of it is way better than losing a child, or a spouse. Or losing your home, or starving. Even though we are struggling financially (understatement) we have support which allows us to eat, and live, and even keep the girls enrolled in their activities.

X got a small role in our Youth Theatre group’s fall production, a Dr Seuss twist on Romeo and Juliet. It’s probably the smallest role in the cast, an unnamed Capulet (Capitulate, in this version) Servant, but she doesn’t care at all. She’s just happy to be involved. In this, I could learn a lot from her.

My appointment with my pain specialist also went well. 

Dealing with Medicare and Medicaid today was a total failure, but that isn’t surprising. Medicare said Medicaid would drop me if I un-enrolled from Medicare, and Medicaid said they couldn’t help me at all, that “you have to understand ma’am, the two programs are completely separate” and didn’t seem to understand at all what I was talking about. I will need to go in person to my local office. When anything providing my medical support starts to break down, I completely freak, so J said he would be the one to go into the office since he is much less likely to break down sobbing trying to explain the situation. Unfortunately my wonderful pain therapist doesn’t take Medicare and won’t see me until the situation is resolved, which was a disappointment to me to say the least. I have little hope that all this bullshit will be fixed by Monday, so I will have to cancel that appointment; Dr Mac suggested someone else which I don’t want to do and also broke my heart a little. But still. This is a temporary setback.

J is applying for jobs. I got my CGRP injection today and am very lucky to be involved in that study which is something I never take for granted and need to remember is a major positive in my life. There are other positives as well: my volunteer work at the historical center, participating in the Youth Theatre Advisory Board, and my Etsy shop, Wind In The Door, which is continuing to provide me with satisfaction and a little bit of extra money.

The edges of things don’t always lead to pits of despair. If you can find the easier-to-descend slope, or the previously-hidden stairway, you can lead your children out of the harsh wind to a valley of lush green and calm. 

And in the meantime, there is always hope.

And just right now an example of the magic J and I share, and why I believe we will always be O.K. : I sent him the above video just as he sent me the below. 

I feel my luck could change.

  

FRIENDS

Yesterday’s post was written in the throes of depression and fear. What I should never have said is that I lack friends. Yes, I’m disappointed to have recently lost some of the closeness I’ve felt in some significant relationships, but honestly I have more friends, far and wide, in person and online, than I probably deserve.  I realized that in stating I feel friendless I maligned those very important people who support me in every way they can. To those people, THANK YOU.  I apologize for hyperbolizing based on fear. I love you all. 

 New friend Colby with my daughters at Hogwarts Camp

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.

The Magnificent Migraine Community

Searching for a meme or pertinent photo about #MHAM on Facebook a few minutes ago to use for this post, I happened upon my own status update from last year, sharing a link to the AMHA blog and stating “a little frustrating that more migraine sufferers aren’t participating in #MHAM.” Ironically, I am writing this entry because a fellow blogger checked in on me, offering extremely kind words of support on my very sad last post of over a month ago, because this year I haven’t been participating, and she was worried (thank you, Skylar). 

The migraine community is a beautiful thing. Most of us haven’t met in person, but we support each other like family. Better than family in many cases. Most of us are chronic (of the bloggers I know best, anyway) and the more frequent migraines become, the more stigma there is, meaning a lot of sufferers don’t actually get support from their own friends and family. It can be incredibly isolating. Since I can no longer work and am on Disability, I am quite lonely and have particularly felt lonely this past month. And I am even one of the lucky ones with a supportive partner, caring extended family, and a few very good, kind friends. 

Since our beloved almost four year old (and 60 pound) collie mix rescue, Asia, accidentally killed our adorable new baby kitten Onyx right in front of me, a horrifying, devastating incident which I could have prevented, I have felt a little broken. Due to the CGRP study, I believe my migraines are better than they have been any time in the past five years. But lately I haven’t been able to express myself well, or do anything more than what is absolutely required.  And, in the open label phase of the study, I seem to be getting all the other symptoms of migraine without severe (or even moderate) pain, which is still debilitating as well as being confusing. Right before we went on our short, whirlwind vacation on June 15, I ended up in the ER, twice, with the weirdest migraine I’ve ever had – I vomited first. Before the severe pain but after two weeks of fatigue, vertigo, phono/photophobia, nausea, allodynia, brain fog, and irritability. I threw up and still wasn’t sure what was going on and then two hours later I was at an 8, and the ER cocktail didn’t work except for about an hour of level 5 pain rather than 9. My second visit the doctor wanted to admit me, which is rare these days and I would have jumped at the chance (my last admit was in 2012) except I would have missed X in her musical, as well as my  pain management appointment right before our trip. But the doctor took my suggestion of another dose of pain meds and a prescription for imitrex injections, which I was out of with no refills, and I did break the headache on my own at home. So doing much better than recent years? Still no picnic.

Undeniably though I am improved this year over last year, when I hadn’t yet met my wonderful pain specialist and had just had the worst headache of my entire life which caused me to get an unofficial secondary diagnosis of cluster headaches and an oxygen machine, but no narcotics, which are controversial but DO work for me (every migraineur is different, which my neurologist refused to admit). And yet last year I published a blog post for Migraine Awareness Month every single day.

So that is why Skylar was worried. And I have no explanation for my silence. I feel like I’m in an emotional cage or a deep well. The walls are high and impossible to climb. I give to my daughters but have very little left for anything else. I’m better, but I’m not. If it’s not one thing, it’s another. And I’m tired.

Yes, Migraine Awareness Month is an opportunity for us in the migraine community to be heard, like I stated last year. And I’m so glad I still have that community around me, even though, hopefully only temporarily, my own voice has gone quiet.

  

  

  

Not So Silent

Two weeks ago today, my beloved dog Asia accidentally killed our new kitten. They had loved each other at first sight so I wasn’t as vigilant as I should have been while Asia was eating. I had every opportunity to pick Onyx up and move him out of harm’s way. I didn’t. I was the only one there. Asia gave a defensive warning nip and it broke Onyx’s neck instantly, which didn’t keep him from seizing and bleeding all over the floor. J came in at just the right time and we held him until he finally stilled. The girls saw nothing.

I have deleted every trace of him from our house and photo collection. All that’s left is one more grave in the Cat Cemetery in the backyard. No one blames Asia. No one blames me. But *I* blame me. I killed my family’s joy, after they so recently lost another young cat. I had every chance to prevent that horrific event, and I couldn’t. I DIDN’T. 

We thought we had a line on another kitten, and a plan to keep it safe, but that fell through. Now there are no plans. We didn’t celebrate Mother’s Day. I finally bought myself a watch at Big Lots and it was broken. Only what I deserve. Everything I touch dies. Even Kenya died when j was out of town.

I thought time would heal. But it hasn’t, I’ve gotten worse. I have been in bed for three days and eaten very little and I can’t make myself recover from this. The girls think I have the flu. 

My one hope is that by feeling so deeply I will prevent the trauma headache which always seems to follow such an event, invariably sending me to the ER. So far that has been avoided. But part of me would rather feel that pain than this pain. 

I just want to sleep, and sleep, and sleep.

The ultimate over-sharer, I told no one. I hope this blog post will help me finally begin to forgive myself.