Learning To Be Okay: Trauma and C-PTSD

TW: For me, just reading the following words will sometimes trigger episodes. But here are things that will be mentioned below: Emotional Abuse, Sexual Assault, Physical Abuse, Trauma, Religious Abuse, Medical Abuse, Demonology, Suicidal Thoughts and Actions 

Questions I get asked frequently: When you say C-PTSD, what do you mean? Surely you can't have had that many traumas, as most people only experience one horrific event or like a rapid succession of awful and then get PTSD, right? And how long have you been suicidal?

My childhood had several traumatic events that I refuse to discuss here as physical, emotional, and sexual abuse were involved and I quite frankly can't discuss it yet. My earliest memory of being suicidal is when I was 8 years old. I used to imagine a small chocolate lab puppy running along side the bus, sitting outside the classroom window, rolling in the grass outside my house, etc. When my brain couldn't process my emotions, I would look out windows and imagine that puppy there. When things got awful, I imagined running with that puppy. I began to daydream about following that puppy far away from where I was. At night, I dreamt of running after the puppy and the puppy leading me to the door to the Afterlife. In my dreams, I was always too afraid to open the door. Sometimes a wolf would chase me and the puppy to a dark, terrifying door and I would scoop the little guy up and run with him. The wolf would tell me that it was only a matter of time before he would get me and drag me into hell. I began to dream that the way to avoid the wolf was to either run or to slip into a natural death. At the ripe old age of 8, I began trying to hold my breath until I died. Nearly every single night. If I saw dark spots I'd stop, because I didn't want to end up at the dark door with the wolf. The several occasions that bright spots exploded before my eyes, indicating my successful journey to the bright door with the puppy, something happened such as a family member coming in my room to check on me or a loud noise that would scare me into breathing. After a few months of this, I decided it wasn't a good way to die and I'd have to find another way to get to the puppy and the bright door. I began to accept that I'd just have to wait for death to find me, as my attempts to find it didn't work. My physical and emotional abuse continued with new abusers replacing the old. Many events happened that made me desperate to find a way to escape.

When I was 10, I became obsessed with running away into oblivion. I didn't want to run to a place, just wanted to run until I was away from those who were hurting me. I tried to run away from school, but realized it was cold outside and I hadn't had a drink of water in a while. I went back inside to get my coat and a drink and was caught by the custodian, who I lied to and said I was looking for a dropped pencil. He escorted me back to class. I spent many days trying to see if I could open my locker quietly enough to get my coat out but as luck would have it, mine had a squeaky door. I knew I would be caught and get in trouble and I didn't want to get in trouble. I wanted to run away or die, not get in trouble, so I stayed in school. I noticed a small rip in a back fence in the schoolyard and slowly, over several months, made it Abby-sized. I slipped through it and ran away from school again later that year at the beginning of recess, but came back by the end because I realized I had no where to go and I had no plan. Another time I ran away from recess with a plan but was seen by a local mom who asked me what I was doing and I told her I was running an errand but was going back to school right then. She walked with me all the way back until the school was in sight and watched me slip back through the hole I had created in the back fence. She told the school about the hole and it was repaired by the next day. 

When I was 11, I suffered another severe traumatic event at the hands of my peers. It was a bullying session that went entirely too far. I found a book about a pre-teen who used cutting as a means to deal with her life. I hadn't considered violently taking my own life until I found that book. I went home and took a knife out of the kitchen drawer. I was contemplating whether to stab or slice my wrists when my mom came home from a shopping trip or meeting and I threw the knife in the drawer, ran to the bathroom and threw up. I then ran to my room and shook, sobbing as I realized there was no escape from my life and I was truly trapped in it. 

At 12 years old, I had a brief reprieve from all the awfulness as I found a love of fantasy novels and of writing stories about young girls like me with super powers destroying those who tried to hurt them and those they loved. That year was one of the best of my life. Anytime something upsetting happened, I slipped into my fantasy world where I was all-powerful and destroyed my abusers and sadness with the help of an army of cats or with space blasters or with my own amazing super powers. 

At 13, I ended up seeing demons in my room at night who I believed were responsible for my "bad thoughts" about myself. One evening, I crawled from my room to the mirror in my parents' room over and over again like some kind of possessed horror movie kid, sobbing and demanding to know why I couldn't just die. I remember curling up in the fetal position out of exhaustion and praying that the demons would go away. The shadows with eyes I had seen disappeared and I was able to get up. I didn't see them after that. I now know, from talking to psychiatrists and psychologists, that I was suffering from PTSD-fueled hallucinations and that I had been in the throes of a severe depressive episode and that the demons leaving was due to my brain finally kicking into life-saving mode and repressing the memories that had been haunting me. 

At 15, I had my first homicidal stalker. He was a friend who became upset when I did not want to date him. He sent me letters detailing how he was going to kill me and what he was going to do to my dead body. I got a brief reprieve when he went to college and found a girl who looks exactly like me. He was kicked out of college for stalking her and sending her death and rape threats. He then returned to his parents' house and proceeded to e-mail me regularly and call me when he knew my parents were not home. He continued with this throughout my college years and indeed was still taking his car and following me around my hometown occasionally right up until I got married. 

At 16, I helped a guy friend get over a break-up and he became obsessed with me and would threaten to kill himself if I didn't talk to him, hang out with him, etc. I finally drew the line when he asked for sex and sent me a picture of himself with a gun to his head when I refused. I called the police on him and refused to give my name. He got help, but I remained horrified by the whole thing. 

At 17, a boy told me he loved me and asked me to sleep with him. I told him I wasn't ready and he went and had sex with other women and blamed me for it. 

At 19, I was sexually assaulted by a boy I thought was my friend. He proceeded to try to kill me with his car, stalk me for four years, and show up in my college town my junior (or was it senior?) year to try to run me over with a brand new car and then he came to my campus and stood in the middle of it with a gun in his pocket, asking random college students if they knew where I lived. A friend of his called me and told me to hide, as this boy had expressed to this friend that he was going to "finish what he started" with me as he hadn't "tried hard enough" before. 

At 20, a young man became obsessed with me and it wasn't until he was deep in a psychotic breakdown that I found out how dangerous he was. I'll leave it at that. 

At 23, I underwent what was supposed to be a routine surgery to correct a malformation in my skull. It turned into seven horrific surgeries. I technically died four separate times and I have seen the afterlife three times. It was after this that my coping skills completely failed. I became actively suicidal during and after my recovery. Meeting my service dog Riley saved my life. She is the reason I am still here today. 

After meeting her, I met my husband. Together they are helping me heal. Jeph now also alerts to attacks and is learning to lick me and take care of me when I cry.

Add all the above to years of being sick and not believed, medicated incorrectly, and treated like a pariah by the medical community and you've got one hell of a cocktail.

TL;DR: When I say I have C-PTSD, it means I cannot point to a specific time in my life or specific traumas that led to my PTSD. I've been suicidal since childhood.

Other FAQS:

Is your husband an abuser? HELL NO. He is the best thing that has EVER happened to me.

Who were those peers when you were 11? Can you tell us more about that event? I won't go into it because it isn't healthy for me to purposely re-live it when my brain is more than capable of putting me back there at any time in my mind. As for those peers, they've grown into kind, excellent men who have spouses and kids of their own. They've each, at one time or another, approached me and, horrified at their own actions, apologized and begged for forgiveness. Some have approached me more than once because they couldn't forgive themselves. Even though the trauma from what they've done echoes in my brain and will forever, I've forgiven them in my heart and refuse to disclose who they are because we've all moved on.

What happened before age 8? I can't talk about that. If I ever can, I'll let y'all know.

I'd love to hear more specific examples of your traumas between birth and age 14. Sorry, not going to go into that here. 

What kinds of abuse have you suffered? Physical, emotional, and sexual abuse. 

Do you believe in repressed memories? There are several instances that are so bad that I only remember the before and after and who was involved and my brain refuses to let me remember the actual event. When you're hurt, your brain does everything it can for self-preservation and sometimes, particularly for the ones that happened when I was young, it blocks the conscious mind's access to them to avoid experiencing that hurt again in detail. 

WOAH YOU SAW THE AFTERLIFE OMG TELL ME ABOUT IT DID YOU SEE LIGHTS AND STUFF?? I appreciate your interest, but please respect my need to not talk about it. It took months for me to be able to admit out loud that I'd seen anything when I died and I still haven't talked to anyone about it and I'm not sure I'll ever be able to. 

How did 1 surgery turn into 7? My surgeon tells me it was because he was pre-occupied with wedding details for his upcoming wedding and he thinks that excuses his shoddy work on my fucking skull and that it excuses him doing things like losing a surgical instrument in my body, making unnecessary holes in my skull, bruising my brain by shooting a dart backwards through my head instead of the way he meant to, sending me home with fluid leaking out of my brain and my brain in danger of falling into my spinal column because he was busy, and authorizing a surgery without anesthesia because he read the form incorrectly. And no, I can't sue him because I had to sign forms saying I wouldn't in order to get the repairs I needed to live. 

So Many Adventures

So this blog is entitled "The Grand Adventures of Abby" and it's funny because I've been too busy having grand adventures to write a blog post for the blog about my grand adventures.

I went to a Korn/Stone Sour concert. It was a religious experience. Absolutely phenomenal. I had chills, tears, I felt like I was floating, and I stared at the hazy sky above the outdoor stage, saying "Thank you," internally over and over again.

Husband and I keep making it a point to find new places to eat. We tried Rebel Donut, the donut shop that invented a donut based on the meth made in Breaking Bad, and it was delightful. I had one with black frosting and my teeth and tongue were dyed an inky tone for several hours. I regretted nothing. We also went to a local pizzeria which has been featured in many magazines and TV shows and it was lovely. The people obviously cared about their food and we dined by a signed autograph by a young Tom Selleck.

We also experienced our city's fair. It was...pretty bad, actually. Really underwhelming and all the rides were overpriced. But we enjoyed the free circus (which was abysmally small but still fun).
I took my husband on a one-night getaway because this month is our wedding anniversary. And also because we really needed it. We had a lovely time at an adorable hotel that had a water park connected to it.

The dogs were boarded together for that one night at our favorite boarding kennel. They've taken care of Jeph since he was a wee pup. I was so scared to board Riley, as she's never spent a night away from me since I got her. But every nervous phone call to the boarders confirmed that the two of them were having the time of their little lives. And when we picked them up, we noticed that they'd worked through some of their issues. Jeph no longer bites Riley under her face and she knows how to tell him to go away when she wants to sleep. Riley's gotten a bit more needy, but we expected that.

Another reason my baby girl is needy is because we added yet another member to our family. Kritopher "Krit" Wignarajah is a baby bearded dragon, just out of the egg. The name "Krit" is from a really terrible romance novel I read when my husband and I were first dating. We agreed it was the stupidest name we'd ever heard, and decided one day we'd have a pet with that name. Krit's been with us for just a few short weeks and already has established dominance over both dogs and eaten over 100 small crickets. He likes to sleep on my shoulder. Bearded dragons have the cutest tiny snores! We got him because we wanted a low maintenance pet that could keep me company while I studied but that I wouldn't have to play with and get distracted by. We thought about fish, but I honestly hate fish in tanks and bowls. It gives me anxiety to think of them trapped in that tiny enclosure and internally screaming their whole lives. But Krit does not internally scream. He internally judges everything we do. He thinks he is the king and everyone else is beneath him. The looks he gives us are hysterical!

Jeph is learning really quickly now. He sleeps at the bottom of our bed now, but sometimes he needs to go back to his kennel because he gets too rambunctious at strange hours. He is almost 90% loose-leash trained, but is afraid of cars, motorcycles, weed-wackers, lawn mowers, small children, and the occasional smell he can't identify. He's slowly becoming a "good boy," and we couldn't be more proud!

I'm so afraid of failing at this school thing. I can't seem to focus the way I could pre-brain surgeries. And I can only take notes for fifteen minutes at a time. It's frustrating, but hopefully I'll figure it out.
I'm a little scared because I had crawled my way out of that awful depressive PTSD trauma episode and today I suddenly felt...like I was in a dark tunnel and it was closing in on me. I actually said, "No, no no!" out loud. I feel like I am teetering on the edge of this nasty cliff after finally making it back up to the top. To try to help with this, my husband suggested I take tonight off from studying. Hopefully some extra rest will help. I am worried. I cannot afford to not be able to do my school work due to another crippling episode.

Love to you all. Stay safe. Stay here. I care about you.

A New Adventure Begins

I am officially enrolled in a program that, when I complete it, will let me obtain my Dog Trainer License. That's right, folks. I'm turning my hobby into a profession. My love for dogs is going to carry me through these intense classes and into a career I can tell I'm going to enjoy.
Not going to lie, this program scares me a bit. I wasn't at all worried about it until I looked over the material. This is definitely an in-depth program that is designed to ensure only the absolute best reach the end and graduate with their license. I really want to be a part of that elite.

My husband took me to buy school supplies. I've always forced myself to buy practical supplies, but this time I let myself indulge a bit. I do have normal pens, pencils, and erasers, but I also have a glittery zebra binder, a glossy pink folder, a shimmery planner, and a pretty golden notebook. My fellow EDS-ers can appreciate the zebra binder. It's mint green with glittery gold zebras.

Once I finish my book learning portion, I get to work with shelter dogs as part of the school's outreach program. I'm going to work with the dogs who really need it with the goal of getting them adopted. Both of my fur babies were shelter dogs, so I am ecstatic over this opportunity to help other doggos find forever families. I will then get to shadow a mentor and eventually teach classes under their supervision.

Those of you who know me know that I have a tendency to rank academics as #1 in my life. This means I will sacrifice sleep, food, family, friends, health, love, everything and anything for the grade. And not just any grade, the top grade. The one thing I have been scared about is that this program will ignite that toxic part of my brain/personality and that this toxicity will take over my life as it had for so many years. I am determined to not let that happen. Part of that is that I could start studying tonight, but I am forcing myself to wait until tomorrow. I went ahead and looked over the material, but then made myself log out of the online Student Center and I'm blogging and watching America's Got Talent and World of Dance (Fik-shun is a contestant and not a judge?? What is this??) and playing with my dogs. I also made myself stop and eat supper when I realized that I was so absorbed in looking over the material that I was ignoring my stomach pains. Many people don't realize that my GPA was my life for so many years that when I graduated college, I didn't know how to define myself anymore. I didn't know how to measure my success. It took years to get over this awful way of viewing my life, and I'm still not entirely over it. I don't think I ever will be. But I do know that being aware of it means I can make conscious efforts to not let this toxic mindset back into the driver's seat of my life. I will complete this course and I will graduate. I am determined. But I am equally determined that this will not be at the expense of my life, health, and happiness.

My baby Jeph is my "project" dog. I get to take videos of our training sessions, proving I can apply the lessons I'm learning to a real-life canine. Mr. Jeph is unsure as to how he feels about this. He'd rather climb on the kitchen counters and explore trash cans. But he will learn. He's a smart little guy.

To summarize: I'm so excited and so intimidated and so ready. Bring on the pups!

The Porch Theory

Y'all, I had a dream two nights ago and I just can't stop thinking about it. This dream has radically changed how I think about my life. I woke up today thinking about it again and it's been three hours and I can't sleep or stop thinking about it so I think I'll share. Bear with me as dreams are weird and hazy and confusing, but hopefully you can follow along.

In my dream, I had a session with a famous therapist. Famous therapist's name was Sally or Susan or something like that. My brain isn't super original when it comes to names. Anyways, I was in her office with my husband and I was crying and telling her all about my life and talking about how nothing I'm doing seems to be working. She nodded gravely and told me it was because all I was doing was re-painting my porch. Stay with me, guys. This is where shit gets real. I was like, "This sounds like another mindfulness exercise that isn't going to help," and she told me that those exercises helped you recognize the chips in your porch paint and the other general wear and tear. What the heck, right? She gave me a workbook and told me I needed to do the homework before she saw me again the next day. In my dream, I went home and grumbled about having to do some more pointless analogy therapy that ultimately would do nothing for me. I then opened the workbook and what was in there was fascinating.
The Porch Theory is this idea that your life is built like a porch. (I need to add here that I am not a carpenter, have built stage set pieces, and am fully aware that what follows is not actually a good way to build a porch.) There is a poured foundation made of concrete. On top are four main support beams. Covering those are the long pieces of wood that make up the porch. Then comes the stain/paint and the decorations. Each part of the porch represents something different. The foundation is what your every action stems from. This is the root cause of everything you do. Then the foundation beams are the four main focuses your brain has. The long pieces of wood are your values that stem from those main focuses (which are influenced by the foundation). And then comes the paint/stain, which is the actions that you do and your outward symptoms, caused by the values which stem from the focuses that are influenced by the foundation.
In my dream, I did two written exercises. The first was to analyze my life starting from the paint and working my way back to the foundation. Then I labeled a diagram of my current "porch" with what I had written. This exercise took a long time, even in dream world. I ended up skipping around to the different parts of the "porch" as I tried to make sense of everything. The end result was me staring at this "porch," feeling as though I had been laid bare onto paper. My paint, the outward manifestation of my inward life, included like "people pleaser," "excessive apologizing," "panic and anxiety attacks," "sobbing," "anger towards my health," "shame over needing mobility devices, medications, etc," and "going to countless doctor appointments even though I know this doctor isn't the one for me." I could go on, but you get the point. The long pieces of wood, the values, were things like "religion," "putting family and friends above health," "getting the highest education possible," "being the best," "keeping a clean house at all costs," "forcing my body to stay healthy as much as possible," and "working a good job". The four main support beams were "Not wanting to be abandoned," "Not wanting anyone to regret being around me," "Not wanting to be a burden," and "Thinking everyone else deserves more/better than I do."   My foundation was Fear and Worthlessness.
After I did this exercise, I found myself back in the dream therapist's office, sobbing and holding my husband's hands as I told her all about my porch. What could I do? This seemed like a horrible life I'd created for myself, and I felt hopeless about it.
She told me that yes, this is a terrible porch. It is, at its foundation, flawed. She told me that I couldn't expect a beautiful life when my thinking was all stemming from places of fear and worthlessness the same way that I shouldn't expect a porch with a nasty, cracked foundation and rotting wood to be an amazing place to have lemonade and iced tea during the summer with my husband. She told me it wasn't my fault that my porch is shit. She jokingly told me that with the life I've lived, she was surprised the whole damn house hadn't fallen apart. I couldn't stop crying. She got down on my level, looked me in the eyes and quietly asked me if I was ready for a new porch. I told her yes, but how the hell do I do that? She nodded solemnly and said, "Renovations."
She then had me do the second exercise in the workbook. The second exercise was, "Describe your dream porch (aka ideal life/values/etc.). My dream porch's outward appearance were things like "singing in the shower again," and "smiling," and "enjoying time with friends," and "happiness," and "baking" and "painting". My porch boards, my values, were made up of "Living in the moment," "Gratefulness," "Finding contentment," "Loving friends," "Relationship with husband," and others I can't remember right now. The four beams were "mental health," "healthy marriage," "physical health," and "hope." And the foundation? It was Self Love.
Sounds great, right? But how to get there? SallySusan the Dream Therapist was a little hazy on this one, but told me that every time I am having an outward symptom or thought that echoes the nasty porch, to think of the ideal porch and try to follow along with what I think that would look like. For example, if I find myself crying over how messy the house is, I should take a step back and realize that this comes from that gross foundation. I can then try to remind myself of how I want to be thinking. AKA, "Yes, the house is messy but it actually isn't hurting anyone and hey, isn't it great that husband and I have been resting and going places and having fun and yeah, we haven't had time to clean the house but look at all we've done this week!" or "Yes, the house is messy but it actually isn't hurting anyone and if it is, I can ask husband for help because I don't have to do it all by myself and it isn't horrible to ask him to help and we could play music and it could actually be fun!" or "Yes, the house is messy but no, you haven't 'done nothing' all week, you've taken all your pills on time and rested your joints and remember that one time you pet your dog? That was pretty awesome! And it's okay to focus on your health. Remember those beams on your dream porch? It's okay." She told me that I was going to need to go right down to the foundation and change it and then the other changes would follow.
My dream therapist told me that this was going to be nasty, messy work. She told me to think of it like any renovation. There will be setbacks. She told me that any time I experience a setback while working toward this "new porch" and feel like I'll never get there, to just think of it as a construction issue and forgive myself. There might be termites living in the wood of the porch, waiting to be exposed. The renovation crew might take unexpected holidays and leave me with a shattered mess to work around for weeks. Maybe there's some electrical wiring that needs to be replaced. Perhaps we'll get the porch built and realize that the foundation was never actually touched, the crew just said they did it and we have to tear the whole thing apart again. She told me that just as re-making a foundation for a house or porch is ridiculously hard and irritating, re-making a foundation for my life will be, too. And just like porches continually need weather-proofing, the occasional board replacement, re-painting, and other regular maintenance, keeping myself healthy will require constant work. But she told me to look forward to the days when I can sit out on a nice porch, sipping iced tea on a lounger next to my husband and watching the sunset.

Although it was a dream, I'm going to follow along with the Porch Theory and see if it works. Feel free to join me. If you'd like, you can share your own "Dream Porch" with me in the comments or on my Facebook page, Instagram, or Twitter.

Clouds

The clouds are slowly parting. It's been several days since my last sobbing breakdown. I have appointments with doctors to see what is going on with my neck and spine. We're not sure if there's an issue there that needs to be addressed, or if this level of pain is my new normal. I get about 8 hours of awake time, and I can walk around and do things for about an hour total a day. The 8 hours are broken up into a five hour segment and a three hour segment, approximately. I sleep for the other 16 hours. And I'm "resting" for seven out of the eight hours. Sometimes I can "rest" sitting up, watching TV or reading a book. Those are good days. Other times, I need to be in bed, flat on my back, willing my neck muscles to relax, completely drugged on anti-nausea and other such meds. Because my husband works the night shift, I'm awake from around 10 PM until 1 AM (give or take a few hours either way). Then I sleep until he comes home and I'm awake from 8 or 9 AM until somewhere between noon and two. It isn't a totally strict schedule yet, and the dogs are having some issues adjusting to this new "sleeping while it is light out in the afternoon" schedule. Also, I keep having to erase whole sentences of this post because a very eager Jeph seems to want to blog by hitting the keyboard with his paws. I think he thinks I'm playing with a toy and he wants to play, too! One of these posts, I'll have to let him guest post.
Part of the clouds parting is that after a sobbing fit, I fell asleep for 19 hours and missed some doses of a medication that I'd been put on a couple of weeks prior to my meltdown. When I woke up, I felt like myself. It was like a fog of awful had been lifted. I thought perhaps it was exhaustion, but it turns out that particular medication was making me worse. I stopped taking it under close supervision by my husband. Finally, I'm starting to be able to calm my brain and heal. I've been able to begin to convince my brain that it is safe here again.
I am now finally able to look at my mental health care objectively and realize that I am not currently receiving the care that is best for me. I'm starting the process of making a change to a different care team. The person who has been diagnosing me and prescribing medications for me is not an actual Psychiatrist. She is a Licensed Nurse Practitioner who works alongside the Psychiatrists at the mental health clinic. Nothing against Licensed Nurse Practitioners, but I need a Psychiatrist. She even has continually admitted that she has no idea what she's doing with me and is stumped by me. And I've found out that the medication that I've stopped wasn't even for any of the symptoms I've been experiencing. Also, the Psychologist that I've been seeing also told me this past week that she has no idea what to do with me going forward and that my symptoms are severe enough that they are out of her realm of expertise. So here we go, trying to get a new care team.
I had a three hour long, several phone call evaluation from my insurance. They're trying to get me enrolled in their Case Management program so that I can have someone working with me side by side to get all the specialists and referrals and help that I need. It was quite a depressing evaluation, as I had to go through all my symptoms and all my different systems and explain how and where and why they are failing. But after the phone call, I suddenly felt strangely empowered. No wonder I'm breaking down! No wonder I sleep 16 hours a day! No wonder I need a wheelchair! No wonder I can't do what everyone else can! Look at everything I deal with on a daily basis! Look at all I manage to do in spite of this! Look at how I can still drink water, take the dogs out, change the laundry, keep up with personal hygiene, and more. Sometimes, I can even make myself sandwiches or heat up leftovers. And you know, I'm going to go back to being proud of that. I'm going to work on being proud of myself again.
And speaking of being proud, I just looked up from my screen and my dogs are so proud of themselves because they found a rip in an old dog bed and have scattered the stuffing all over the living room floor. They are so happy destroying their bed. I hope they'll continue to be happy with they realize that they are responsible for that bed getting thrown in the trash.
Until next time, friends. Stay safe,

Everything Is Grey

I'm in the midst of the worst mental health breakdown I have ever experienced. I say this honestly. I say this not to solicit sympathy or pity. I say it because I think that honesty goes a long way with those of you who have come here to read about my life. I do not have an Instagram-perfect life. (If you follow me on Instagram, you know everything is heavily filtered and mostly is pictures of my dogs). I'm not one of those military wives who writes about attending military balls and taking advantage of all the opportunities that military life has to offer. I have zero things against those types of military wives. Sometimes I wish I was one of them. I envy them and their ability to wake up and get out of bed and walk more than a block without having to sit or ride in a wheelchair. I admire their ability to cook for their families, decorate for holidays, keep their kids dressed and alive and healthy, etc. In contrast, today I brushed my hair for the first time in seven days. I'm not joking when I say that this was a monumental task. Talk about knots. It was pretty gross. Thankfully, I had the presence of mind to use a lot of conditioner and a hair mask before attempting to unsnarl the mass that my ponytail had become.
My Psychiatrist told me that I need to treat this like the flu. Lots of fluids, lots of rest, watch a lot of movies and TV, and be nice to my body. I bought a bunch of food that I usually love, because otherwise I can't attempt myself to swallow even one bite. My poor anxious stomach can't handle the idea of a full plate or even a half-full bowl of cereal. I've dropped at least five pounds in the past few days and it's not a good kind of weight loss. I've slept for over eighteen hours a day every day and I'm still so exhausted that my entire body is pretty much constantly shaking and I'm seeing double.
I won't go into what is going on in my brain simply because it is too triggering to me and to others who have similar issues. Let's just say it is hell and leave it at that.
I'm safe. I have 24/7 monitoring and I have to show my husband my pills and show him me taking those pills and I have an action plan and lots of resources when I need them. I say when, not if, because I 1000% need them. Believe me, this is not an "if" time.
My Psychiatrist also told me that I'm actively going through new trauma right now. I also looked up my medications and they're medicating me pretty heavily, apparently. It seems as though the combo that I'm on is used to treat some real nasty things. She looked at my eyes and saw me losing my mind sobbing and told me I need to get into intensive treatment as soon as possible. She called my insurance company and is working with them to get me into a Partial Hospitalization Program and a DBT program. She helped me set up the safety plan and the action plan and if those fail, she told me she wants me in the hospital. Right now they seem to be working okay, so that's nice I guess.
We had people over for a barbecue and it was actually really nice. Lots of laughter. I felt like I was playing the part of a happy person, but even that was nice. It forced me to take a shower and put on real clothes and talk to people. I didn't have any energy to do makeup or care about outfits or anything, but it was still good for me to try to interact with normal humans. It was exhausting, and I'll probably be more "sick" tomorrow, but I still think it was good for me. And it was definitely good for my husband to laugh and grill and tease and eat with his friends. He's been so steady and supportive this week, and it was comforting to see him let go and have a good time.
I'm wearing my new PTSD bracelet constantly. A local first responder makes these bracelets as a way of coping with his PTSD and as a helpful tool for the PTSD community. The beaded bracelet has a bunch of normal beads and one skull bead. The skull bead represents the trauma. The rest of the beads represent blessings. You're supposed to go around the bracelet, naming all the blessings in your life with each normal bead and reflecting on the trauma in order to let it go when you reach the skull bead. It's actually a rather helpful visual, as it is obvious that the skull bead is hopelessly outnumbered by the blessings beads. Even though it is horrifically difficult for me to name blessings right now, the act of forcing my brain to try to think of positive things is healing.
I'm not sure when I'll be writing another post. Thank you all for bearing with me with the sporadic posting of the past few months. I'm afraid I can't be certain of when I will have the energy to write again. Hopefully this nastiness passes soon, but everyone is warning me that it can last for a month or more. I think I'll run out of shows to binge-watch by then. Stay safe, friends. I'm off to hide under a blanket, watch Masterchef, and use up another Kleenex box. Love.

So Many Updates

So it's been a hot minute since I've written a post. I know you've all been anxiously waiting for an update on my life and, more importantly, the lives of my fluffy children. So here it is.

If you're following me on Instagram, you know that baby Jeph has begun having Service Dog Training outings.

As you can see, he is overjoyed to be following in his big sister's footsteps! When I take them places together, he copies her behavior. When he's by himself, he's not quite sure of what to do, but he still tries very hard. 

Check out those ridiculously adorable eyes!

Riley is enjoying her new job as the Good Example, as well as her time off for naps. She does not quite like to wake up from said naps...

My favorite thing is the look of utter betrayal on her usually sweet and happy face when she realizes that she's been woken up for a picture. She's like, "Human, why? Human stahp." 

I've been not writing posts because I got some news that I actually need a wheelchair permanently. I need a mechanical one. We're getting a manual wheelchair for travelling, but the doctor wants me to have an electric one to get around the house. It is a hard thing to wrap one's mind around, and I've written and discarded many a blog post about this news and my feelings on said news. I've come to the conclusion that it honestly really sucks to have mobility taken away, but a wheelchair is so that this declining mobility doesn't stop me from getting around. A wheelchair is a helper and a friend, even though the stigma of having one still exists. And what would I rather do: continue falling and crawling on the floor and having my husband have to walk me around the house or zip around on wheels and take the dogs on walks and get to see the world while sitting? I think I'm slowly making my peace with it. So watch for me yelling, "On your left!" while I zip by you Steve-Rogers-Style. 

I've been put on Seroquel for my mental health. It's main side effect is drowsiness. And boy, have I been drowsy! I take it at night, as I get super loopy about twenty minutes after taking it and then it puts me right out. I sleep all the way through the night and then into the morning. And I feel like I'm slightly drunk the entire day until about a couple hours before it's time to take it again. I'm hoping that my body will adjust to this medication, as it's the best one I've tried. I'm taking it in conjunction with my very high dose of Effexor. There are some symptoms that are getting worse, but others are definitely stabilizing or even getting better. And so it goes with treating any kind of illness. 

We bought a 2001 Red Corvette. I'm in love with it! It is so comfortable to ride in, and I'm loving working on it with my husband. I know nothing about cars, but I can follow directions well and I adore learning. It's been a long time since I've been able to work with my hands, and I get such a thrill from building and cleaning and unscrewing and all the things one can do with a tool chest. I've only ever built furniture and set pieces, but my husband has spent his life working on cars and is a very competent teacher.

Look at how proud he looks to be in our garage. This was the first day we brought him home, before we began to work on him to make him the best he can be.

Baby got back.

Currently, there is a really low-budget dubbed horror movie on TV. The "monster," if you can even call it that, is so ridiculous that I can't stop laughing every time it appears on the screen. What even was the Creature Designer thinking? Or Makeup Designer? I don't even know who or what is to blame for this atrocious attempt at scaring an audience. You'd think an Italian horror movie would be better than this, but nope. Oh, now we're visiting some creepy producer who has cameras everywhere and they're making it out to be like a cyber horror flick? I'm so confused. Oh, the creepy producer is in a wheelchair. Can't wait for him to get possessed and stand up or some other cliche. I've been loving these campy horror movies that have been on TV as well as some old favorites like Agatha Christie's Hercule Poirot with David Suchet as the main character and The Great British Baking Show. All are excellent distractions from pain and loneliness. Oh, wait guys, there is a creepy repairman in the house of the main character. I'll bet he's possessed or something. Main character (woman, actress) is going upstairs to check on her baby. There is a stranger watching the baby, but the stranger claims to be related to the regular babysitter. And the main character doesn't seem disturbed by ALL THESE STRANGE PEOPLE IN HER HOUSE. Also, the director keeps blaring heavy metal music at weird moments to show that something out of the ordinary is happening. But enough about this terrible excuse for a movie. Did y'all know that old episodes of Mystery Science Theater 3000 are on Hulu and Netflix? My husband and I really enjoy making fun of these silly movies, and MST3K adds in an excellent level of humor and entertainment to the wooden acting, bad camera angles, etc.

But now it's time to make some lunch. Hopefully I'll be able to write more consistent posts in the future. Love to you all!

We Are The New Warriors

The more I think about it, the more I am convinced that I need to create a soundtrack playlist for my life. Doing the kind of things that chronic illness and mental illness warriors do on a daily basis requires superhero movie music. I mean, honestly. Someone without these things won't know how hard it is to fight with your own body and/or your own mind. It takes so much energy to get out of bed, brush teeth, style hair, make food, and other things that able-bodied and neurotypical people do in their routines. (I'm not sure if neurotypical is the proper term, as these things change a lot. What I mean is someone who is not fighting a mental illness. Feel free to correct me in the comments if the term has changed, and I will use the new term in future posts.)
Tonight, I looked over the reading my Psychologist has given me. I set my alarm to get up in time to get ready to go to my first Group Therapy session, prescribed by my Psychiatrist. I took my evening mind and body medications in order to be able to survive the night. I looked over my prescription papers that say that I medically need a wheelchair starting now. And all I could think as I did all this was action movie music swelling the way it does in every good action movie and the main character (me) saying epically, "Let's do this!" followed by the bass drop and subsequent fight music.
When we say we are warriors, we do not take that term lightly. We are not being overdramatic. We are not applying labels to things that don't deserve them. Someone who fights as hard as we do is a warrior. These illnesses take our blood, sweat, tears, friendships, families, future hopes, saliva, organs, awareness, and whatever else they want. And we fight tooth and nail to keep as many of those things as long as we can.
We are many. We are mighty. And if we ever get completely better, we'll dominate the world. But for now, we will take naps and continue to fight when we wake up.

10 Happy Things

While I am still over the moon about the new EDS research, there's too much other stuff going on in my medical world right now and I can't try to make sense of it enough to write a meaningful post. I'm so tired and so terrified of new physical and mental symptoms that are doing whatever the heck they are doing and I don't think I can handle talking about these things publicly yet.

So. Here's 10 Happy Things:

1. Guess what my baby Jeph learned to do? He can open doors all by himself! He opens the door to go outside to pee all on his own. This is huge, people! Huge! And today, he opened the fridge for me for the first time! Simply amazing. I love him.

2. Tonight, my husband's friends are coming to see us. We're going to dress fun and go out and hopefully have an excellent evening.

3. I put an automatically-spraying air freshener thing in our living room and also cleaned the floors and now our house does not smell like pee. And will continue to smell nice, unless Jeph leaves me a present or two.

4. I'm excited to take a really relaxing bath this afternoon. I'm going to put so many excellent oils in it and stretch out my angry muscles.

5. There is ice cream in my freezer and I'm going to eat so much of it.

6. I'm excited to get my hair touched up so that it continues to look amazing.

7. There's a huge conspiracy thing going on that Justin Bieber is a reptilian creature and it's the best news story I've ever seen ever. There are like videos and everything where people go, "RIGHT THERE! HE BLINKED LIKE A LIZARD!" It's honestly amazing and I am so here for this.

8. I'm so excited to get Jeph's "Service Dog In Training" vest in the mail. Then, we get to start practicing and training in public.

9. I have so many green outfits that I have options for this weekend! I can try a bunch of them on and then decide instead of being stuck with a green t-shirt or something.

10. Magnum just released a Cookies 'N Cream ice cream bar and I need it.

Love to you all.

The Good, The Bad, And The Jeph

I've been officially diagnosed with PTSD. I was right. This is bad news because, well, obviously I'm going to have this for life and it really, really sucks. This is good news because it means I have treatment options and support groups and everything I need to cope. I started a new mood stabilizer on Saturday, and so far the only side effect I've experienced has been my eyes jumping around and not focusing as well as I'd like them to. But my mood...guys...my mood swings have gone dramatically down in just three days of this medication! So good. And the noise in my head has lessened maybe five percent, which is a small but noticeable difference. 

In not so great news, I have something else besides PTSD. The doctor is not certain what it is yet, and wants to treat the PTSD first and foremost so that she can get a more clear picture as to the symptoms that are part of the separate disorder. She warned me that it is one of the bad ones. The ones people hate to be diagnosed with. She comforted me with the knowledge that whatever it is, she will find it out and there will be treatments for it. She also ruled out Schizophrenia, which was a huge relief. She said it is probably a dissociative disorder, and that it is not at all unusual that a disorder like that accompanies the PTSD. My brain is resorting to child-like coping skills to deal with the overload of trauma messages it is processing. Children run away from problems, make up stories, ignore things until they go away, etc. and my brain is doing these kinds of things without my knowledge, causing black-outs, voices, and all the other terrifying things that aren't the horror that I'm already dealing with caused by the PTSD. It is also possible that the PTSD diagnosis will eventually be changed to C-PTSD, or Complex Post Traumatic Stress Disorder, as I've had several traumas and not just a singular event. Also, my Night Terrors have become more pronounced, with me scaring my husband half to death by waking up screaming bloody murder. We're not sure if that is a side effect of the mood stabilizer or a new symptom, but it's not very fun for either of us. The dogs are both so used to me that they just lift their heads up like, "You good, bro? You need us? No? Okay," and then they go back to sleep.

SPEAKING OF DOGS! Jeph. You guys. Jeph. My little three month old fur baby has started taking care of me during attacks without any training whatsoever from me! How is this possible, you ask? Riley trained him. That's right, folks. Riley showed him what to do time and time again and he learned. On Saturday, I was lying on the couch in such a way that Riley couldn't quite get to me without injuring me. She nudged Jeph and he put his toy down, hopped up on the couch, walked up my body to my face, and licked my tears off. He noticed some tears had gone down onto my neck and he got those, too. Riley made a sound at him and he then laid down on me and kneaded my body with his head and paws until I stopped crying. He stayed on me and whined until I pet him, calming me further. Finally, we fell asleep together on the couch. Riley fell asleep on the floor, confident that her human was taken care of. He also insists I pick him up when I am pacing around the house, trapped in a manic episode. What a great little guy! He's still a little terror, eating the couch, knocking things off tables, eating laundry, and jumping up on me with his sharp little claws. But he is also coming along so well with his training. He is learning to walk by my side in a harness that he only hated for a few minutes. He is learning to be a calm, well-behaved little one. And now, thanks to Riley's guidance, I know he can perform some service dog tasks, and I'm eager to see what he can do when I actually train him!

It's been a weekend, y'all. But I'm hopeful for a future that will be difficult but doable. A future full of hard healing and many, many puppy cuddles.

Psych!

Yesterday, I went to a two hour psychiatry intake appointment. It was the most terrifying thing I have ever done. It is right up there with surgeries, teeth extractions, and staying in a room where there is a spider on the wall.
The building itself was probably the most run-down, creepy building I've seen. Think in your head of all the horror movies with psych hospitals, and then you have an idea of what I had to willingly walk in to. I almost couldn't get out of the taxi, as I was struck with such a paralyzing terror. I had been shaking all morning, and the moment I saw my destination, I couldn't breathe. Riley nudged me and made me get out of the car. She took me all the way to a building at the back of the creepy campus where the main entrance apparently was. She guarded me immediately upon entering, and did not stop guarding me for the next two and a half hours. If that doesn't tell you how awful the building was, I don't know what will. After getting registered at a run-down desk with people's pen marks all over it, I was led to a nurses' room to get my vitals checked. It was completely dark inside, as the nurses inside I guess don't believe in turning on the overhead lights. They took my vitals to the tune of someone's mixtape playing angrily in the background. I waited in a run-down, nasty waiting room. Then the grey clouds parted, so to speak, as I met the nurse who was going to be conducting my intense interview. She was a lovely person, and showed no signs of judgement no matter what I said. Her approach allowed me to open up and be incredibly honest with her the way I am honest with people I have known for years. After the interview, I had to wait in a nasty waiting room again for an appointment to get made, and guess who is returning to that awful building tomorrow for another two hour appointment where I will get a diagnosis and maybe some new medications? Me.
Last night, I broke down sobbing. I asked my husband what would happen if the diagnosis was something worse than what we thought. My loving husband held me and told me it wouldn't make a difference. He told me that we would just have a label for what is wrong and more possible treatments. He assured me he would stay with me no matter what and that we would get through the upcoming storms together, just as we have all the previous ones. I don't know what I would do without him as my rock. I never understood what people meant when they said things like "he is my rock" until I was married to him.
So listen up, hallucinations, voices, racing thoughts, flashbacks, panic, blank-out episodes, and everything else in my head. We're coming for you. Even if I have to go to every single creepy building in the world.

Learning To Be Okay: Hostage Negotiations

This is another Learning To Be Okay post. A reminder that these posts are for me to help myself work through the issues that I am facing in my mental health battle and I will not be offended if you can't read further due to issues of your own. Be safe, loves. TW: Self harm, abuse, suicide

One of the major problems I have is that I cannot buy nice things for myself or do any basic self care without feeling an incredible amount of guilt. There is a tiny, evil voice in my head that tells me that I am not worth it. That I don't deserve it. And I'm talking anything from makeup to clothes to skincare to expensive medications to bath supplies to basic groceries. I don't deserve to put fruit I like on the grocery list. I don't deserve to ask for a gallon of milk if my husband isn't going to drink over half of it. Sometimes it even tries to convince me that I don't deserve to take my pills on time. I haven't suffered enough for the day, so I should put off taking my heart pills. I am well aware that it looks ridiculous on paper, because of course I should eat and take pills and have clothes without holes, but please understand that this tiny evil voice is so convincing and so present in every decision I make throughout the day that I have moments of weakness where I believe it. It is exhausting to continue a running dialogue with it all day, every day. But the lesson I have learned about this voice is that it is not the voice of rationality. It is not the voice of reason. It is not the voice of truth. It took a very long time to learn this lesson, and I have to continually remind myself that no, this voice is not one to listen to and take advice from. The day I realized this lesson, it felt like I'd awakened from a nasty nightmare. Before I realized what was happening, my inner dialogue went something like this:

"I'm thirsty."
"You just had a drink fifteen minutes ago. You don't deserve another sip of water for at least another hour. Do some damn work for the first time in your life."
"True. Okay. What more can I do?" *Works self into exhaustion* *Dehydrates self* *Doesn't understand why self is always sick and why self cannot just rest*

Many times, the disgusting voice would try to openly convince me that I didn't deserve to be alive. I'd breathed enough air for the hour, I'd hurt enough people, I was gross and disgusting and the world had tolerated me long enough. I was ill from EDS, yet no one believed me and I was told how horrible and attention-seeking I was. Wouldn't it be better to just end everything than to hurt my loved ones with my supposedly fake illnesses? You see how convincing this nasty voice can be. The first time I tried to kill myself, I was 11. The knife was going toward my body when my mom unexpectedly came home and I was afraid of being caught and dropped the knife and ran to the bathroom to throw up. I know it doesn't make sense, but I didn't go through with it because I didn't want to burden my mom with finding my dead body in the kitchen right when she came home. Several other times that year, I waited until the house was asleep, said goodbye to my stuffed animals, put the blankets over my head and then held my breath until I passed out, trying to will my body to kill itself. Thankfully, it did not work and I woke up and sobbed, partly from not knowing why I wanted to die so badly, and partly because I was still alive. I could never tell anyone about these things, because that would be burdening more people, and that was unacceptable.

Once I realized that this voice was out to destroy, not help, my dialogue changed. I no longer willingly let it control my life. It feels like a hostage negotiation with my body as the hostage and myself and the voice as the opposing parties, but it is so much better than blindly listening. For example, as I sit here, I am running a dialogue in my head that goes something like this:

"I'm thirsty."
"You just had a drink fifteen minutes ago. You don't deserve another drink for at least another hour."
"That's bullshit and you know it."
"...Is it? Are you sure?"
"I'm thirsty, my water is right next to me, I'm going to drink it."
"You need to finish this blog post first. You haven't earned a drink until you hit "Publish."
"Screw you." *Takes drink of water* "Oh, I have to use the bathroom."
"It doesn't hurt yet, you can wait. Or are you so weak you have to put your disgusting self in the bathroom more than once a day?"
"That...makes no sense. I'm going to the bathroom."
"Ok, fine, but good luck taking a shower today because you haven't done any housework."
"...Ugh."

I am aware of where this evil voice came from. I won't get into a lot of it here, mostly because I'm afraid to hurt people who may have unwittingly contributed to it. But I will say that I know that it stems from my fears of inadequacy, my inability to be perfect all the time. I will also say that if you have any interaction with children at all at any point in your life, encourage their uniqueness and their individual abilities, talents, and personalities. Be loving and safe. When children feel that the adults in their life are not safe unless they perform a certain way or act a certain way, it feeds that nasty voice that I would not wish on anyone. Children start to withdraw, which is sometimes mistakenly viewed as a sign of maturity. A child with no personality to speak of is a terrified, hiding child, not a well-behaved young person. You might be surprised how the children under your care actually grow if you prove yourself to be a safe adult. And if a child trusts you enough to let you see their true selves, do your damndest to not violate that trust. Teach your children not to bully. Bullying is not funny, it is not something all kids do, you are literally screwing with people's lives. Take your role as a parent or teacher or caregiver or relative or someone who sees a child occasionally seriously and be a safe person.

I am looking forward to getting more tools for dealing with this nasty voice from my new psychologist and possibly controlling it a bit more with medications my new psychiatrist might supply. But until then, I will continue the hostage negotiations.

VETERANS DESERVE BETTER

Okay, so this is going to be a long post so buckle up because I am furious. I used to be one of you. I used to be like, "Don't the veterans have enough funding? Our military spending is out of control. Why is our government constantly asking for more money?" I did. I honestly did. I wish I could go back in time and smack myself. Anyone who thinks the state of veteran affairs in the USA is just fine should be forced to go to their local VA hospital for an emergency situation. But since y'all can't do that, I'll just describe some of the shit that people who fought and lost for us have to go through. I should also mention that I've never been a super hardcore patriot, and I really really really really hate war. I would be happy if there was never any need for a military and we all just got along. But since there is a need for one, the extremely brave men and women and others who fight to protect us NEED TO BE TAKEN CARE OF AND AT THE VERY LEAST TREATED LIKE HUMAN BEINGS WITH FEELINGS.
Right after I posted my previous post, I took a lovely bath. After the bath, I attempted to take a nap. Suddenly, my stomach cramps were horribly worse and the bleeding was seemingly out of control. I called my Primary Care Manager's office and the receptionist ordered me to go directly to the ER closest to me as soon as I could. Cue me calling my husband at work in a panic. Cue his superiors telling him to "go take care of her." Honestly, my husband has the best people in the world to work with. More on that later. The hospital connected to my Primary Care Manager's building seemed like the logical place to go, as it was the closest and it would eliminate insurance battles and confusing paperwork for some poor overworked Tricare representative (who are all extremely lovely humans).  It just so happened that the hospital connected with the medical unit my PCM works for is a VA hospital. I thought nothing about that at the time, as there was blood everywhere and I was expecting a normal ER experience. Poor, sad, naive little me.
We got to the VA hospital (I'll call it the VA from now on) and secured a parking place. We had left my service dog at home as we were in a blind panic and didn't think, "Hey, Abby has PTSD from many things but ESPECIALLY HOSPITALS so we should probably bring the one thing that helps with that."
The building was disgusting. Run down chairs. Gross floors. Confusing hallways. Old color scheme. Huge pamphlets that were misspelled lined the wall, advertising things like "Homless Shelter's" and "Funerall Service's." We were handed paperwork that asked a bunch of questions about my prior service. Of which I had none. Looking around the waiting area, I felt extremely uncomfortable. I asked my husband if he would ask if this was indeed where we were supposed to go. I did not want to take a bed or doctor away from an elderly veteran with an emergency, which is who the waiting room was filled with. My husband asked the desk clerk about this, was told that yes this was indeed the hospital that was connected with my PCM and we did the right thing. He was handed a new piece of paper that had him fill out a bunch of information about himself and me and our relationship and why and what else I don't know because I was bleeding and in pain. After about a half hour, we were "Triage'd." We saw a nurse and got asked all the intake questions and I got an EKG and some blood work in a creepy side room that if I looked hard enough at, I could see the dust on the walls. The poor overworked tech who took my blood and did my EKG did everything roughly and quickly. I actually have scars on the inside of my mouth from biting everything so hard to keep from screaming from the painful needle insertions. When I warned the tech that I have EDS and my veins would be hard to find, she acted like I was lying and was a huge setback in her otherwise perfect day. After she finished all my "tests," I was left alone in that creepy room for a while to lick my own wounds. My husband confessed to me he'd nearly thrown up six times watching everything happen to me. After this, we were shuttled back out to the creepy waiting area to wait for a bed. A huge TV was playing this awful real crime show that would have been fine if it weren't for the room full of veterans visibly jumping every time a gun shot went off on the screen. I watched a jovial man with a tiny service dog attempt to converse happily with his neighbor, trying and to keep his mind off the screams and shots coming from the TV. His dog "alerted" him to his odd behavior every time a shot or scream happened and he paused in his speech to go to somewhere far away in his mind. His poor tiny dog did its best, but after a few hours it was so exhausted it contented itself to sleep on the man's foot, attempting to "ground" him.
That's right, I said hours. I was actively bleeding. I don't even want to think about what the emergency of some of the others in that waiting area was. And yet we sat in the waiting room for five solid hours. Five. Hours. My husband eventually had to run home and get Riley (as I was not okay) and let Jeph out to pee. While he was gone, I slipped in and out of PTSD flashbacks. So much fun. When he came back with Riley, I cried with relief. An angry nurse came out of some dark corner behind the desk and said my name. And just like that, I got to go to the back where the doctors and nurses were. I thought my troubles were over. I was wrong.
The nurse that we had was the most lovely human being. She was trying her best to keep from drowning in a sea of responsibilities that was too much for one person. As she took us from the angry nurse and led us to a bed, another nurse told her that she better go talk to the guy in bed twelve as he had been there for six hours and was really angry. Bless her soul, her sigh was barely audible as she carefully and firmly asked the other nurse to do some damn work (not her words, but I could tell that was what she was thinking) and go talk to the guy as it was the other nurse's room. She and the student nurse she was training (yes, this woman was also trying to train someone else on top of everything) did a good job taking down my allergies and my vitals. But then, when I told them of the medications I was on, they didn't have anyplace to write down this information. I had told the intake people of my allergies and medications as well, but on my arm band it said "No Known Allergies" and "No Known Medications." After an exceptionally long wait, we got to see the doctor.
I say the doctor because I think she might have been the only doctor there. And she was either overworked or extremely incompetent. Our guess is that she was some lovely combination of the two. The woman spent two hours doing God knows what at her desk after listening to me telling her I was ACTIVELY BLEEDING. Our nurse checked in on us at the two hour mark and apologized, telling us the doctor had probably forgotten about us. And the doctor confirmed this when she came back in. She then did an examination so rough and ineffective that Riley tried to guard me from her. The doctor couldn't see into the orifice the blood was coming out of, so she asked for a light. After ten minutes, a light from some 60's horror movie was creakily wheeled in. At this point, I was shaking so badly that Riley tried yet again to get the doctor away from me. I had to tell my service dog to stop doing her job so that the doctor could hurt me yet again by an exam so rough and incompetent that my very sweet and never violent husband confessed he fantasized about punching her. Her diagnosis? I was bleeding.
That's right, folks. We were now on hour seven of being in an ER for bleeding and we finally got a diagnosis...of bleeding. So glad there was a doctor there to tell me that, otherwise how would I have known I was officially bleeding? I hope you can hear the sarcasm, because I'm not sure I can turn it up any louder. She then disappeared for more hours to "page an emergency Gastroenterologist." She "paged" this person for four hours. Or was it three hours? I don't know. Anyways, at hour nine my husband and I were literally laughing hysterically and blowing up gloves and hitting each other with them. You see, there was no cell service anywhere in the building. So we had spent about four hours in the back of the ER with nothing to do but play conversation games and try to not scream at anyone. So now we've got a total of nine hours. Nine hours. At hour seven, we had begged to be discharged and called by this mystery Gastro person later. At hour nine, the doctor finally told us that was okay with her. At hour nine and a half, a different nurse came in, apologized to us, and told us that she had forced the doctor to let us leave. We escaped from the building like it was burning.
And if you think my experience was bad, let me tell you a few more of the things that I saw there. I saw vet after vet come in on gurneys, having collapsed in various areas of the city. And these brave men and women were collapsing from wholly preventable things. They were homeless or living in poverty and could not afford their medical supplies. There were several who knew the EMTs and the nurses as they collapse every day or every other day due to not having colostomy bags, insulin, etc. And they were treated so rudely. They were talked about as if they were things and not people. They were talked over and ignored. Let me repeat: they were spoken about as if they were objects. A man was trying hard to tell someone, anyone that his problem was his colostomy bag and if they would just change it then he could go and not take up room in the ER and instead of speaking to him and acknowledging him, they kept putting his oxygen mask back on and telling him to be quiet and wait his turn. When it was his turn, a woman listened to his feeble mumblings and, without saying a word to him, yelled to a co-worker, "Hey *name*, I've got a disgusting job for you!" A disgusting job. Yeah, I get changing a bag is gross, but still. The questions "Are you homeless" and "Do you have supplies" were repeated over and over again. Excuse the dark humor, but if anyone was looking for a VA drinking game... And they called security on one man who had to be in his seventies, as the EMTs said he was just going from ER to ER all day getting the supplies he needed to stay alive. And security made him leave. Another man had a severe PTSD episode and was kicked out by security. Veterans who had a friend or caregiver with them were relying on that person to get them to and from the bathroom, bring them water and medical supplies, etc. Can you imagine having to go from ER to ER to stay alive? Can you imagine being a veteran who is saluted in the media and USA culture as being brave and heroic, yet being forced to rely on that hell hole for your medical care, treated roughly and ineffectually, and sometimes thrown out for trying to stay alive? I had the option of going somewhere else. These veterans do not get to choose.
On my way out, my husband went to get the car while Riley tried to find a place to pee. I met a Navy veteran who told me that yes, the VA is terrible, but it was the only warm place he could find for the night. He was headed in to fake an emergency so that they would let him sleep in the waiting room.
I heard chatter in the waiting room that this hospital was actually one of the better ones. The VA hospitals are understaffed, underfunded, and wholly unsuitable for the care our veterans need and deserve. It breaks my heart. It is still breaking my heart. And making me furious.

Compare and contrast that horrible day with my second ER experience. In the middle of the night, my already terrifying condition got twice as terrifying. My husband rushed me to a different hospital near our home that happened to be rated the best in our state, a fact we didn't know at the time. Within three hours I had a bag of IV fluids, a CT scan, blood tests, urine tests, had seen a competent doctor four times, had gotten a competent exam that didn't make my husband want to punch anyone, had multiple needle sticks that were done so effectively and quickly that I actually didn't realize they were happening, had a medical record typed up and had everything documented, was apologized to at 90 minutes for my visit "taking so long," as they were "super busy" that evening, and had a diagnosis and a referral to a specialist for further management. A specialist that I actually ended up seeing the same day because I was an emergency case. And now I've got tests scheduled and e-mails sent to me confirming these appointments.

My diagnosis, by the way, is that I am internally hemorrhaging, but at a very slow rate. I'm not in life-threatening danger because of the slow rate of bleeding, but holy hell it hurts. I am home now, resting until my tests the first week of March. In the meantime, I am supposed to rest and to try to not let this awfulness make me worry. I'm home now. I'm safe, warm, I have food and water, and I have a TV and Netflix and Hulu to keep me calm and help me rest and heal. I wish I could say all of our veterans have the same luxuries.

I don't know who to call about how awful the veterans have it. I don't know if writing to my senators or the president or anyone will help. I hope that this blog post, however tiny and not widely read, will shed some light on their plight.

A brief note - Remember how I said that my husband and I are blessed with how wonderful the people he works with are? Several of his direct superiors stopped by the house yesterday with flowers and told me that if I ever have another emergency and cannot get my husband on the phone, I can call them and they will either get him or come here and drive me to the hospital themselves. "Air Force Family" is a phrase that is said often, and I have found it to be true. Because there is so much talk about "Military Family," I feel even more responsible to speak up about the conditions retired "Family" members are forced to endure.

What Even Was This Week So Far?

Sorry for the delay in posting new things, but I've been incredibly busy. Of course if you're following my Instagram, you have an idea of some of the things that I've dealt with the past few days.

On February 13, I woke up to the doorbell ringing and my dogs losing their furry minds. When I opened the door, there was a florist with an arrangement of a dozen roses and baby's breath! I was so shocked! The florist didn't want to just leave the flowers outside because there was what qualifies as a Winter storm in New Mexico going on, so he just kept ringing the doorbell until I got to the door. And as you all know, EDS means I move extremely slowly. My poor dogs. But anyways, the flowers were from my husband and they were gorgeous! They remain gorgeous, sitting proudly on the middle of our dining table. I really don't like sharing romantic things my husband does with the public as they happen, as I feel those things are between us and meant to remain private. So I'm sorry, but there was no Instagram post of the flowers. I do enjoy everyone else's posts about the things they do with their significant others (it's one of my favorite things), but personally I don't feel comfortable posting those types of things until after the fact. When I went to put the flowers on the table on Tuesday, I realized just how incredibly dirty my house was. I couldn't have those flowers in a dirty house. No, sirree.
Fun fact about me: I often have manic episodes that result in crazy amounts of things getting done. They usually last a few hours. This particular one came on suddenly and lasted for five hours. Riley recognizes the look in my eye and will hide to avoid getting a bath. Jeph's soft and shiny coat and freshly-trimmed nails tell the tale (tail haha...I'll see myself out) of how he did not heed his sister's advice and failed to hide in time. Poor little guy hates baths. I have done every trick in the book, but to no avail. On Tuesday, I drained the tub and got in with him. He hid between my legs and was okay with getting the soap rinsed off as long as he didn't get dragged from his hiding place. I mentioned before that he likes showers, but he is simply too big now for me to hold him and clean him and not drop him, especially if he wiggles.
The house enjoyed a deep clean. The living room, garage, kitchen, dining room, laundry room, and bedroom were all taken care of. I had to shower three separate times, as I am allergic to all dust and my manic cleaning kicked up quite a lot of it. By the time my husband came home from work, I was exhausted on the couch, hardly able to move.
I was vaguely aware that a year prior, my husband had got down on one knee and asked me to be his. But I assumed we would just be happy about it and save our celebrations for Valentine's Day. I assumed wrong.
My husband told me that we had dinner reservations for 7:30 and that the flowers were indeed meant for February 13, not 14. I was completely flabbergasted and excited, but so very tired. Husband let me take a nap to gain a few more "spoons" (the way the chronic illness community refers to energy*). I had a beautiful time dressing up and doing my hair and makeup extra fancy. Husband kept the destination a secret until we were there. It was this gorgeous restaurant, in our city's preserved antique section of town. It was candle-lit, the food was open-fire-cooked, and the waiters were all obviously professionals who were proud to make this their career. As they should be. What a meal! Steak, crab legs, fresh salads, soups, bread, mousse, and more! It was honestly magical. As was our server's impressive beard. I could go on and on about the merits of this hidden restaurant jewel, but I think I'll keep the rest of this particular memory between my husband and I.
Then came Valentine's Day. Oh, what a day. It began with getting up disgustingly early to drive my husband to work so that I could have the car for the day. What I thought was going to be only a fifteen minute drive to a new Internal Medicine Specialist turned into a forty-five minute evil hell ride, as I had the address wrong when I had looked it up the day before. I'm not even supposed to drive more than ten minutes at a time, as my head and neck end up in an extreme amount of pain. And here we were, having gone forty-five minutes one way. Riley was carsick by the time I finally pulled into what appeared to be a dilapidated old hospital.
Again, if you know me you know that one of my Traumas that fuels my PTSD stems from a terrible hospital/surgery experience. Walking into a converted hospital was not a good idea, but with Riley gently tugging me along, I opened the door and headed in.
I'm sure I've been in a more confusing lobby, but I don't remember it. I had no idea what to do, and there were no signs to tell me. Finally, I found a box of stickers where I was to fill out my personal info. Think "Hello My Name Is" stickers with a few more lines and a place to put your doctor's name. I filled out a sticker, then just stared around the lobby until I caught a passing nurse and begged for instructions. It turns out "everyone knows" that you put this sticker with your personal info in this unmarked box and then just sort of hope that the admitting staff looks in the box and calls you over and also hope that this sticker gets shredded or something. Fun. Eventually, I was called over to a desk where I was "admitted," which was confusing to me and upsetting to my Trauma Brain. I was here to see a specialist, not to get admitted into a system. I ended up getting a yellow band, as I was at risk of falling at any time. The one thing that was good about this whole admitting fiasco was that they had a separate form that asked for my preferences. What name would I liked to be called, what gender I identified as, my birth gender and name, my preferred language, my sexuality, my religion, and other questions. The admitting woman then immediately switched to referring to me as "Abby" instead of "Abigail." And didn't slip up once. And neither did the nurse who called me to the back. It was a bright spot, as I felt that they would for sure honor and respect the requests of individuals whose names and genders were different than they were at birth.
Then it was time for the actual appointment. The nurse who took me to the back obviously had not been briefed on any of my conditions, as she asked me to put my belongings on a shelf high above my head while she took my height and weight. There was no secondary option, so I put my things on the floor. She was very confused, and seemed thrown off her game. Apparently everyone she knows can lift heavy things above their heads. I mean, you'd think the giant Black Lab with "Service Dog" and "Mobility Assistance" and "Medical Alert" stickers all over her vest would be a clue. And I was right about it being an old hospital. I was led right past a place that looked exactly like the nurses' station in the cardiac unit in a hospital I had been in. I kept myself firmly focused on Riley, having asked her to "follow" the nurse to our room. I had been told to bring my medical records and had a huge stack of just the last few years (my whole medical record would fill up several cabinets). But the nurse did not want the medical records. The admitting woman had not wanted them. I had no idea why I brought them. The nurse mentioned that "Ms. Guttman" would maybe want to flip through it. I was confused as to why the nurse wasn't saying "doctor," but then just brushed it off thinking that this was a workplace that encouraged familiarity.  The nurse finally confessed to me that she was terrified of dogs, and I immediately apologized and asked Riley, who was guarding the front of me, to go and sit on my left side. The nurse took my pulse incorrectly, spelled all my allergies incorrectly, and didn't want to write down any of my medications in my file. I chalked this up to being terrified of my dog. I never blame anyone who is afraid of Riley, because if someone came in to my place of business with a tarantula, you better believe I wouldn't be able to do my job!
Then came the specialist I had been waiting two months to see. I was almost out of medications, and was eager to speak to a specialist about managing my meds and getting re-fills/re-prescriptions. I've also been sick to my stomach and bleeding rectally for two weeks now, and was wanting to ask what the hell was going on with that (TMI, I know. But this is what you read my blog for, so...).
The door opens. This small woman walks in. She asks me if I am Abby. I say yes. I say, "Hello, Dr. Guttman." She says, "Oh, I'm not a doctor. I'm a registered nurse practitioner, so I hope that's okay." I was stunned. She sauntered over to the doctor's chair and began to glance over my file. I managed to say that my Special Needs Coordinator had made this appointment for me with the impression that she was an Internal Medicine Specialist and that it even said so on my referral letter from my insurance company. She nonchalantly responded with, "Oh, I misrepresented myself. But I've been a nurse for so many years I'm practically qualified to be an Internal Medicine Specialist." I wanted to run away, but my life-saving medications were running low, so I sat through an agonizing, frustrating, terrible appointment in order to get prescriptions for my meds. It included, but was not limited to: the stethoscope getting stuck in my clothes three separate times, her not being able to hear my heart and lungs because her "hearing is failing," her demanding to know why I'm on so many medications, her confessing that she had no idea what I'm diagnosed with, her looking at labs from four years ago and saying that she's sure nothing has changed since then, her telling me to go to a different health system because she used to work for them before they fired her for wanting to retire (suuuure), and her taking a full half an hour to type up four prescriptions.  
When the appointment was over, I gave Riley an emergency command. Her normal "let's leave" command is "Lead Me Out." Don't judge me, but her emergency command is "Let's Get The Fuck Out Of Here." She also responds to "Let's GTFO." She pulled me all the way through the run-down old hospital, through several doors, and out to the car and didn't let me stop or cry until I was firmly inside the car.
I sat in the car shaking and crying. When I finally calmed down, I realized I was going to have a forty-five minute drive home. Cue the crying all over again. Riley licked me from the backseat and grounded me until I could get a hold of myself.
My poor husband got a torrent of furious texts. He took time out of his work day to respond, as he was also horribly angry at what had happened. I decided I was going to get McDonald's for lunch. I had planned to stop by the BX (like an Air Force version of Target) when I got back to the base and pick up a surprise V-Day gift for my husband, but after that particular "adventure," I decided to grab some Valentine's Day chocolates as well.
After picking up cheeseburgers, fries, and a Shamrock Shake (my guilty pleasure that I wait for all year), we sat in the BX Mini-Mall parking lot, took deep breaths, ate, and fully put the horrible morning behind us.
Riley and I dropped my prescriptions off at the base pharmacy and headed to the BX. We took a slight detour on our way to the chocolates because Riley was alerting me to the danger of a mannequin that she thought was standing suspiciously still for just too long to be harmless. We picked up a cologne Husband has wanted for months, a sweet Valentine's Day card, and many chocolates. Usually I wait until February 15-17 to get the chocolate on sale, but this was an emergency situation.
My Care Coordinator was incensed when I told her what had happened. She told me that they had told her over the phone that this woman was an Internal Medicine Doctor, and that there was no excuse for them lying like that. She is now working on finding me an actual Internal Medicine Specialist.
Jeph was more than happy to see us when we got home, but Riley was so tired that the little guy ended up playing by himself while she slept.
When Husband got home from work, we shared leftovers from our romantic dinner. I then took an aromatherapy bath for pain, as my body was over-exhausted by the events of the day. After the bath, which was absolutely amazing, I was re-energized and we went to a Mexican sports bar for dinner. We enjoyed drinks, wings, tacos, nachos, and yelling at a UFC fight, a basketball game, and several horse races. It was exactly the kind of thing that was needed after the day we had both had. We left Riley at home because the poor girl was exhausted and would have hated the loud environment of the sports bar. I do need her 24/7, but when Husband and I go out we occasionally leave her at home to rest, as he is very good at recognizing my symptoms and signs and sometimes parents just need Date Night.
This morning, my neck is horribly stiff. I can't look to the right. Jeph is enjoying this, and continually waits until my back is turned before jumping up on the trash can. I will take a bath later, enjoying some amazingly potent oils that I got from this amazing little herbal and natural medicine shop Husband and I discovered in downtown Albuquerque. I am also wearing an Aromatherapy necklace I got from that shop, and it has been invaluable.
I'm not sure when my next blog post will be. Today, I am resting. Tomorrow morning I have a two hour Psychiatry evaluation and intake appointment and tomorrow afternoon I have a one hour Psychology evaluation and initial appointment. Tomorrow will be so tiring. Friday I see my current Primary Care Manager (aka regular doctor) and will ask about the infection in my belly button, the bleeding from my butt, and my extra nausea. Saturday, Riley has a grooming appointment at a new groomer's. We have a few days of rest and then it's off to Texas for Husband's brother's graduation with the In-Laws. Wish me luck and spoons, friends. And follow me on Twitter, Facebook, and Instagram for pictures and stories in-between blog posts.    

*https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ 
If you're wondering why the heck spoons refer to energy...

Take Your Feel-Good Illness Movies And Shove Them

Long-term illness is not like you see in the movies. It is not the quiet, pretty, good little girl who it turns out is secretly suffering from a life-threatening illness. It is not a reclusive billionaire who is really hot if he just shaved and who decides not to live because what is the point of living if you are in a wheelchair. It is not a gorgeous, pale woman with subtle makeup lying tragically in a bed, staring out a window and living only so someone can be her savior. It is not the optimistic, sweet yet sometimes sassy little girl who helps you discover the how to live again before she tragically passes away from cancer without showing any outward signs at all ever. It is not the invalid who just needs a little fresh air to suddenly be completely healed. It is not two kids trashing a town because that's how one learns to "live" and they're going to die so they might as well "live" as much as possible.
When I was younger, I used to cry that I was not "pretty" sick. I wasn't a beautifully thin child in a warmly lit room, surrounded by toys and cards and balloons and other gifts. I was constantly yo-yo-ing up and down fifty pounds, as medication side effects played with my body shape. I swelled up to three clothing sizes larger in the afternoon, then woke up back down those three sizes. I was eleven the first time a stranger asked me when I was due. I wasn't tragically weak and sitting outside in a wheelchair, taking in the sunlight that would magically heal me. I was told time and time again by school counselors that I was sick only for attention. I was horribly harassed and traumatized every day by my peers at school, and while that for sure played a part in my mental health and mental health does affect one's body physically, it had absolutely nothing to do with my underlying actual physical issues. I was compared to the Secret Garden boy and the Heidi girl over and over again. Maybe I should try yoga, go out in the sun more, try a sport, etc. And then there was the "why aren't you dead yet?" question that I got time and time again from peers, teachers, strangers, and well-meaning family friends. I began to wonder when my illnesses would finally kill me. Everyone else seemed to think that being sick for a long time inevitably led to death or it wasn't real. And everyone couldn't be wrong, right? When my stomach pain got so bad it led to dizziness, sweating, vomiting, and fainting, I hid how bad it was for two years. Two whole years I let my family believe that I was just doing regular pre-teen girl things like makeup or dancing or whatever in the bathroom when really I was having spasms in whatever dark corner I could find because either I would die tragically soon or I was really making it up and didn't realize it and it would go away soon. Watching movies that portrayed illness just made me feel so incredibly inadequate. Something was super wrong with me that I wasn't like what I saw.
Long-term illness is greasy hair, smelly bodies, dried vomit on toilet seats. It is realizing in the late afternoon that you haven't brushed your teeth all day so many days in a row that your teeth ache. It is doing your hair and being too exhausted to do makeup or get dressed. It is looking around at the house and realizing that while you've done the dishes, every other room in the house remains a disaster and you simply cannot get up to clean them. It is applauding yourself every time you manage to get from the bed to the couch. It is realizing you've already watched every episode of every show you want to see on Netflix and Hulu and resorting to watching things like Divorce Court because at least you haven't seen every episode twelve times.  It is suddenly realizing that you've got an infection starting near one of your surgery scars and being terrified that you'll end up in the hospital with a blood infection and then calling the doctor's office and getting an appointment for a week from now and being terrified that this appointment isn't soon enough. It's managing to feed the dogs, let them out, and that's about it. It's sitting on the couch extremely hungry, but being too exhausted to get up and make yourself something to eat. It's getting dehydrated because your legs decide to not let you walk to the faucet and you've run out of water in the pitcher by your bed. It's keeping a notebook with you with all the important information you need to remember because you can't remember any of it by yourself. It's being dependent on other people for your care. It's being dependent on a dog for your care, sometimes. It's holding a degree from a top liberal arts college and not being able to use it because you can't work for one hour a week, let alone forty without ending up in the hospital for a week. It's having to have so many reminders and systems in place for medications and still forgetting to take the right pills at the right time. It's having your service dog annoy you until you realize, "Oh! It's pill time!" It is people telling you that you are so brave for continuing to live. It is people telling your significant other that they are so brave and good and pure for staying with a horrible medical mess monster like you. It is strangers offering you advice. It is strangers glaring at you for parking in handicapped spaces because you're too young to be ill. It's fighting hard to be heard by doctors. It is crying with relief when you find medical professionals who help you. It is crying in despair because you've woken up in pain yet again just like you have for the last twenty or thirty or forty years. It is seeing spots when you bend down to pick up a towel you've dropped. It is falling down stairs, falling in bathrooms, falling in kitchens, falling at friends' houses, falling in grocery stores, falling in movie theatres, throwing up in every single public bathroom in your surrounding area, passing out at an event that was supposed to be about a friend or family member but now is about you because you've passed out. It is waking up on the floor of the bedroom unaware of how you got there or when or if you've hit your head or broken bones. It is knowing the EMS personnel by name (Oh, hey, Len. How was your kid's dance concert?). It is comparing and contrasting hospitals in the area in casual conversations. It is trying desperately to not bring up your health in regular conversations. It is a constant struggle. It is ugly, it is brutal, it is exhausting, and it is gross. Depending on what you've been diagnosed with, you might be on the highway to death or you might be trapped in a debilitated body for years upon years.
Yes, it makes you stronger, but it's because you have no choice. You have no choice but to fight every single day. You are literally fighting for every breath you take and every tiny task you complete is a reason for rejoicing. I would pay so much money to go see a movie that portrayed long-term chronic illness or terminal illness like that.