Updates, Updates, Updates

I'm going to be going to the Cleveland Clinic in July to see Rheumatology, Pain Management, and Neurology. I'm hoping that someone will at least know something about EDS. According to several people, Cleveland Clinic is the place to go for Hypermobile Ehlers-Danlos Syndrome. I really honestly hope they're right. 

Honestly I'm so tired from all of this. I'm tired of fighting all the time and then something else goes wrong with my health. 

I saw an audiologist today and found out that I have hearing loss. And my brain isn't processing what I hear correctly. After I see an ENT and the Cleveland Clinic Neurologist, they're most likely going to be fitting me with hearing aids. 

There might also be something very wrong with my brain and it might be deteriorating faster than I thought and it scares me. Honestly scares me. My brain has always been my greatest strength. The fact that I was the top of my class was the one thing I always fought for. I took pride in being able to remember facts and memories and songs. And now I'm forgetting words right and left, forgetting whole chunks of memory, and having to watch everything with subtitles. It sucks.

Also, my body is getting worse and I need to use my wheelchair more often. Which I'm refusing to do right now because I'm stubborn and sad. Even though it will help me. So I should do it. Rats. Fine, I'll do it. Y'all make a convincing argument. 

I hope the Cleveland Clinic can help me improve my quality of life. I'll do whatever they want. I'll hang upside down and adopt a muskrat. I'll stand on my head and recite the the alphabet backwards (which I've never been able to successfully do). Whatever they want. 

In happier news, I've been really enjoying Brooklyn 99. It's a very light-hearted, sweet show. And Terry Crews is a complete gift to the entire world. God bless Terry Crews. 

This is a very short update, but seeing as I can't remember the last time my blog updated, here we are!

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.

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.

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.

GREAT NEWS FOR EDS ZEBRAS!

Today is a beautiful, gorgeous day! Today, new medical research articles are being published about Ehlers-Danlos Syndrome! The classifications and requirements have been updated for the first time since 1997! After 20 years, we finally have some new information! Twenty years, people! I'm over the moon. I can't wait to skim the medical articles when they become available to the public later today. A "layman's" version will be published in a few weeks for easier access for everyone.
Do you realize? Do you understand? This means there is updated information that doctors can read to understand how to treat us. This means those of us who have gone misdiagnosed and shoved to the side can be like, "OH LOOK! MEDICAL RESEARCH THAT YOU CAN READ THAT PROVES I HAVE AN ACTUAL PROBLEM IT IS RIGHT HERE LOOK AT IT!" It took me 25 years to be diagnosed properly, and with these new classifications, my type of EDS diagnosis might get altered slightly in order for me to get more specialized treatments.
The original classifications of "1,2,3" etc. have been replaced by acronyms and easily-understood diagnostic criteria. My "EDS Type 3 Hypermobility" would now just be called hEDS. How great is that? The others acronyms I've seen so far are cEDS (Classical) and vEDS (Vascular). Later today, the articles about the three main types (hEDS, cEDS, and vEDS) will come available to the public along with articles about the lesser-known types. I can't speak about those because I actually don't know what they are. I'm excited to find out and see if I fit those instead of hEDS. But if I stay with a hEDS diagnosis, I'm okay with that. But I digress. The point is, PUBLISHED NEW RESEARCH FOR THE FIRST TIME IN 20 YEARS!
There is even research on pregnancies and EDS. I know I've been very quiet about this kind of thing, but I absolutely cannot get pregnant currently. Is it possible for me to get pregnant? Yes. Is it horribly dangerous for me and my unborn child? Yes. Would we both die or be horribly destroyed for life if I didn't have an abortion? With the research from 1997, yes. What is this new research? I don't know, but I'm interested to read it! What a beautiful day it would be if the horror stories of women who have EDS dying in childbirth, losing their babies, and being wrecked and their baby being horribly hurt would disappear from the internet or be a rare case instead of the norm!
A week from tomorrow, I go to my doctor to talk about getting a wheelchair. If there are treatments that can reverse the damage my joints have endured or treatments that can slow that nastiness down, sign me up. Seriously.
The symbol for EDS is a Zebra. Zebra stripes on everything. Why? Because there is a famous quote by Dr. Theodore Woodward. Addressing medical students in the 1940s, he said, "When you hear hoofbeats, think of horses, not zebras." So many of us have been treated as confusing "horses" by doctors who get frustrated with us and shove us to the side and dismiss us when we explain that we're different from other "horses." When we finally realize we've been zebras all along, the relief at having a name for ourselves is incredible. Even more rare is finding a doctor who knows what to do with our zebra-ness. The more light this disgusting, debilitating, awful illness gets, the more research will go into it and the more treatments will be discovered and the more people will be positively affected and maybe someday those of us who are "Zebra Strong" will not be seen as burdens to doctors, but as human beings who have a terrible but treatable ailment.

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.

I'm So Tired And The House Is So Messy

I'm so tired. And the house is disgusting. Small pieces of dog toys litter the floors. I can't remember what my bedroom floor looks like. The side room doors are closed, partly so the puppy won't pee in there, but really because there is so much work to be done in each room and it is easier to just close the doors and forget about it. The dust bunnies took our brief trip as an excuse to multiply at alarming rates. And the dogs happily pooped all over the backyard. In one day, the grass is hardly visible and the nasty smell coming from the backyard is enough to stun a small elephant. Add that to my inability to bend over due to neck pain and the abdominal hemorrhage and you've got the situation: me stuck on the couch as the house falls down around my ears. The dogs are eating trash they found under the bed. I attempted to teach Jeph two new commands today. One of them stuck. The other one...we'll work on it.
I might perhaps be able to dust some today. In the living room. So that is one out of like seven hundred things I need to do. Did I mention that I have a Colonoscopy/Endoscopy on Friday? Did I mention that most people have to go on the liquid diet for one day but I have to start it today? Did I mention that I ate breakfast this morning as my last meal for the week and it made me incredibly ill for no reason whatsoever? Did I mention that I'm on hospital-level mgs of Zofran in order to stay out of the bathroom? Send help, folks.
Of course my husband would help me with everything if I asked him, and he does so many things without me asking. He takes care of the trash and the dishes and takes care of Jeph in the evenings and I honestly don't know what I would do without him. Probably cry more.
But the point of this post is not to tell you that I've got an amazing husband. It is to tell you that I am feeling overwhelmed and tired and crabby and sick and that this is normal considering what my body is going through right now and that it is okay to feel these things and to let these feelings run their course so you can get past them and get back to living life. Which I will do. This post is at the height of feeling overwhelmed. Perhaps later today or tomorrow, you'll all get a post about how life doesn't suck as much as I thought it did in this particular moment. We will see.

Master To-Do List That You Are Not Expected To Read But I Wrote Out Because I Needed To Vent Somewhere:
1. Backyard poop pick-up
2. Dust Living Room
3. Dust Master Bedroom
4. Clean both bathrooms
5. Laundry
6. Dishes
7. Trash
8. Pick up all trash the dogs have scattered all over the house
9. Throw away the old flowers on the dining table
10. Get Jeph humping Riley's head on camera because it is hilarious and he does it when she takes his toys
11. Write a blog post that doesn't suck
12. Clean Kitchen counters
13. Clean Dining Room table
14. Vacuum and Baking Soda Master Bedroom
15. Re-learn rules of capitalization because this post is a mess as far as that is concerned
16. Put all the weird stuff that found its way into the Living Room away
17. Swiffer (the wet steamer one) the hardwood floors
18. Give Jeph a bath because he smells like pee again
19. Clean Jeph's kennel because that's probably where that awful smell is originating from
20. Put the ten loads of clean laundry that are hiding in the first side room away
21. Clean both side rooms so they are useable and we have company coming in a few weeks and also maybe we can shove the dogs in one of the rooms occasionally to play
22. Vacuum both side rooms
23. Take all the papers that haven't been filed and file them already for goodness' sake
24. Re-organize the side room closets because they are gross right now
25. Continue to teach Jeph "Down" and "Lay Down" this week as well as reinforcing "Sit," "Leave It," and "Quiet."
26. Cry over how long this list is and how you're literally only going to be able to do maybe two things off of this list.

Things Learned While Travelling Part 1

Things I Have Learned By Travelling Part 1:

-People are mostly self-centered when in airports and will knock service dogs out of their way to get to their gates.

-McDonald's is good everywhere.

-I hate talking to people on planes.

-So many people refuse to read "Do Not Pet" signs.

-TSA agents are sweethearts who are usually dog lovers and who are doing a thankless job.

-DFW is the Devil. I have found Hell, and it is consistently located in the bowels of the Dallas-Fort Worth International Airport.

-Any airport that claims to have services to accommodate disabilities really just means that they have an elevator somewhere and some dirty wheelchairs that don't actually function and maybe someone who doesn't communicate well to drive you to a random gate.

-Riley is one of the most well-behaved Service Dogs in an airport at any given time.

-People love Riley and will run me over to ask her how she is and if she is a good dog.

-People think that if someone has a Service Dog, it is okay to interrupt their private conversations to loudly inquire about said dog.

-My husband is still my hero and gets even more annoyed than I do with the stuff disabled travellers have to put up with.

-Chick-Fil-A will give you a plain grilled chicken patty for your dog if you ask (yes, you pay for it).

-We need more USO rooms in DFW. PLEASE.

-Travelling with people who know what they're doing or travelling by yourself are the best ways to travel. Unless you like stress and adults acting like tired toddlers. 

-Watching CNN while waiting to board does not help with travel stress (AAAAAAAAAAA).

-Always wear loose-fitting clothes and say "screw it" to bras and belts. Put a sweater or jacket on over that business and be comfy. You'll thank me later.

-Empty water bottles that can be filled up after security are invaluable unless you like paying outrageous amounts of money for airport water.

-Be prepared (Scar or Boy Scouts version).

-No one can pronounce my last name.

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.

Learning To Be Okay Part 1

I will be occasionally baring my soul to y'all, as I am working very hard on my mental health recovery. I see a new psychologist soon. I spoke with her at length over the phone. Our goal in working together will be to help me cope with my mental illnesses, not irradicate them completely. Therapy is not a magic pill, and I will have to do hard, dark, terrifying work in my mind and in my life in order to help myself. I'm scared about doing this work, but I am ready for it. A really good way for me personally to work through issues is to write about them. I will title these posts "Learning to Be Okay Part __," so if you don't want to or can't read them, you'll know which ones to skip. Today, a certain issue is running around and around in my brain. In an attempt to start working on it, I write about it here:

I haven't the slightest idea how to not worry about money. I grew up worried about it. I have saved and scrimped and budgeted and been terrified of not having enough since I can remember. In high school, when I finally had some income of my own, I hated spending any of it. I cried every time I had to make a purchase that was necessary. In college, I wore my shoes and clothes until they were almost indecent with the number of holes in them. My friends just learned to accept it as one of my quirks. Once I was working for a living, my medical expenses made it so I never had enough money. I ended up putting groceries on a credit card just so I could eat enough food to be nutritionally balanced. I bemoaned the price of milk when it went up to almost four dollars a gallon. I hated walking by the produce section, full of gorgeous fruits and vegetables I could not afford and could not medically eat. The special diets I was on were so expensive, and I cried after every grocery trip. 

When I met my husband, I was working a job that my health could not handle. I was too terrified of being homeless or not being able to afford my treatments to stop, even though my health was steadily declining and I was visiting emergency rooms every other week. When my now husband, then boyfriend, insisted on helping to support me, I had so much guilt that I was physically ill. I was terrified to the point of wild panic that everyone who knew him might think I was taking advantage of him. I was also so incredibly angry at my body. I had graduated with honors from a top liberal arts college, and here I was unable to pay for groceries and medications to keep myself alive.

Fast-forward to now. My husband has a good job. We have a safe place to live. My pantry has the weird powders and supplements that I need for my stomach issues. My medicine drawer has the medications I need to keep myself breathing. I haven't been to the hospital in over three months. And I honestly don't know how to handle this change. I am convinced somewhere deep in my brain that one day I will wake up with nothing and have to fight for food again, working jobs I cannot physically handle and destroying my body in the process. 

The positive side of this is that I am always on the lookout for sales and coupons. I can't bring myself to buy anything without researching it thoroughly, so we always end up with good quality items. And my husband has been amazing about this. When he found out that my shoes had holes in them, he took me to buy new ones and encouraged me to throw the old ones away. When he noticed that I had hardly any clothes that fit, he took me to buy some new ones. I insisted on taking advantage of the clearance racks and sales, and he sweetly indulged me in that little eccentricity. 

I keep frantically donating and giving to people who don't have enough, as I hate that there are people in the world who go through what I did and I absolutely loathe that there are people who have it worse. I want to give them all a safe place to live and a loving family, but since I can't do that, I donate my clothes that still have wear in them and anything that I can't use goes to charity.

I have this deep fear inside me that I will someday become materialistic out of nowhere. I know it isn't really a thing I should be afraid of, as this isn't in my nature. But I still worry. What if some people still do secretly think that I am taking advantage of my dear husband, as I do not look sick to the un-knowing eye? I know that I worry about these things more than I should, because I sometimes rave about them during panic attacks when I am not in control of what I am saying. My ever-patient husband holds me and comforts me while I cry, and then insists on not letting me wear shoes whose soles are literally falling off. I am grateful for him every single day. He is the best thing that has ever happened to me. I love him.

Now if you'll excuse me, my dogs are barking at the neighbor dogs, and I must thank them for their diligent protection of me. They are very, very good dogs.

Rock Bottom?

(Because I know many of my readers suffer from things similar to what I am writing about today...TW: Trauma, Medical things, Mental health. Read safely, loves.)

There was no post yesterday because my body decided it was done. I had a full physical breakdown. I slept for fourteen hours and when I finally awakened, it was because my angel of a husband physically shook me awake. He knew I was dehydrated and hungry, even though I could feel nothing but the severe pain. He helped me sit up and forced my reluctant body to take pills and drink water and eat food. He helped me to walk to the couch where he could keep an eye on me. I had a few good hours where I was awake and coherent. Then, suddenly, I collapsed again. Apparently, Husband spent an hour warming me up with blankets and heating pads and tea while massaging my convulsing limbs to get my blood flowing properly. I remember hardly any of it. I am so incredibly grateful for him. He is amazing.

I'm going to be brutally honest here. I know I have a lot of young people who I have taught in past years who look up to me and who will read this and be shocked, as they think of me as upbeat and a positive person. And the number of people who know I have mental illnesses is very low. I'm sorry, guys. I'm human. And I'm scared.

I'm terrified. My mental health is severely slipping. I've begun losing hours of my day as a routine thing now. Instances like suddenly realizing I am at the grocery store with my husband and having no memory of the day prior to that is a normal occurrence. The voice inside my head that tells me to die is getting louder and more insistent. The panic I fight is becoming an overwhelming tidal wave that is rendering me incapable of going a single day without hysterics. The medication that I am on is helping me hold on to my mind by the fingernails. I've begun dissociating very noticeably. And just the other day, I realized that the voices I have been hearing are not going to go away. They've been getting louder. There are three of them, and so far they just say my name or "Hey," but my word, it is terrifying. If I had a dime for every time I have broken down sobbing in front of my husband, saying, "what is happening to me?" or, "you're not real. This is a dream," I could pay for mental health reform in America. And the flashbacks? Let's just say that my service dog Riley is definitely earning her treats. I finally called my EFMP (the program the military has for disabled family members) sponsor and told her I need to see a psychiatrist ASAP to get a proper diagnosis and proper treatment. The asshole who "treated" me before (in 2014) literally sat down with me for three minutes, didn't let me talk, and then laughed at me outright when I told him I was having flashbacks. He told me that doesn't happen and young women like myself are usually prone to anxiety. He then called my therapist in (who was in the same building) and, laughing, told him that I was having flashbacks. The two of them openly giggled together. And I still had to go see that therapist, as he was my only hope at not killing myself. When I told him that I could never trust him after seeing him laugh with my "psychiatrist," he was shocked and told me he didn't realize that would offend me. I should probably pray about that, I was told. He himself did not believe me that I actually was ill until he witnessed a flashback. When I came to, I told him I wanted to die. He suddenly realized I wasn't a "hysterical female" and demanded I be on medication and possibly permanently institutionalized if it got worse. From 0-100 in less than 60 seconds. Impressive. He hadn't ever seen anyone actually go through something like my episodes, and was completely at a loss as to what to do for me. He also was not aware that people could go through more than one trauma in their lifetime. Worst. My only experiences with mental health professionals before that was countless (at least 10) psychologists and therapists who were hired by my insurance company to get me to say that the physical illnesses I had were all psychosomatic (i.e. I was doing it to myself because I was an attention whore. One counselor's words, not mine) so they wouldn't have to pay for any of my medications or treatment. Spoilers: I have three debilitating chronic illnesses that are worse than they would be because I wasn't treated properly for 25 years. Here's hoping that this upcoming experience with mental health professionals is better.

I don't know how much longer I will have my mobility. My next doctor appointment, I'm going to be talking with a physician about getting a wheelchair. I haven't danced in months. I haven't been able to drive a car for any distance by myself for two years now. And yesterday, the pain was unlike any I have ever had (with the exception of the pain from surgeries, because holy shit that hurt). My body is telling me that I am doing too much. And I'm upset and terrified, because all I am doing is sitting on couches or sleeping on beds and yes, I'm cleaning and taking care of a small pup but my goodness, that's nothing compared to what some people do and here I am completely unable to even do the smallest of tasks? It's upsetting.

I get these urges to just do stupid things to my body because who the hell cares, right? What is it going to matter if I drink myself to death or smoke until I have cancer? Or eat until I throw up? Or go walking in a bad neighborhood by myself at 3 AM? Or smack my head into a wall until I see blood? The self-harming voices are getting loud. Thankfully, I haven't done anything yet. I have a service dog who recognizes the spiraling thoughts and comes to jar me out of them. And she's teaching little Jeph to do the same. Human hasn't spoken or moved in a bit? Time to lick her. She's already taught Jeph to climb on my lap and lick my tears while she licks my hand. And my husband refuses to let me get away with saying everything is "fine" when he knows damn well it isn't. If I didn't have them, I would have been dead by now.

So here I am, on a Sunday morning, having not showered in days. I'm completely exhausted mentally, physically, and emotionally. My service dog has "grounded" me at least six times while I was writing this. I know I might lose people. I know I might only have three views. But I have to be honest.

Stay safe until tomorrow, friends. And I will try to do the same.

Showing Love Through Dessert

I'm absolutely in love with baking. I like bringing joy to people through pastries. Is it your birthday? Have a cake. Did you have a big test? Have some cookies. Is it Tuesday? Have some scones. Fresh baked bread, anyone? What about extra frosting from scratch? Are you gluten-free? No problem. I got you. Lactose-free, nut-free, everything-free? No worries. I will show up at your door with food made just for you.

One time in college, I baked five cakes for my own birthday and went door to door giving cake away. Another time, I baked five batches of chocolate chip cookies for a group of exhausted students. And yet another time, I showed up at a friend's door with their favorite cookies because they texted me that everything sucked. I do things like that all the time.

There isn't a lot I can physically do. I can't always wake up at 4 AM to help a friend in need, as sometimes my medication makes me dead to the world in the night. I can't help anyone move as I can't physically lift anything heavy. I can't babysit a young mother's kids, as I never know when I will fall or get horribly ill out of nowhere. But I can make amazing desserts and I can show up at your kids' soccer game with snacks or feed you homemade fudge while you cry over a break-up or feed an army of movers with homemade pizza and brownies. I can't do much, but I can show love to my friends in the best way that I can.

Now if you'll excuse me, I've got to go frost the layer cake I have made for some new friends who are coming over tonight. And then maybe make some cookies. Or fudge. We will see. But it's definitely all going to get paired with ice cream sundaes.

Time Out

Today, I am exhausted. There is pee on every blanket we own except for two that are currently on the bed. These two are totally inadequate for sleeping under, but you do what you have to when you're hopelessly behind on laundry. Thank God for my husband who spent three hours cleaning our house with me tonight. All that is left to do is the mountain of laundry before we have friends over this weekend. Jeph had no accidents on the floor today. But the bed...oh, the poor bed. He had a shower today (he prefers them to baths) and was so upset by how cold the world outside the shower was that he just couldn't keep control of his bladder. So while I was getting a new towel for the shivering pup, he cried and walked slowly around the entire bed, peeing a trail of sadness. I of course did not blame him. Showering is a pretty big deal for the little guy. And he watched his poor sister get subjected to a bath before his shower. Tonight, he learned the command, "Quiet," with copious amounts of treats. After that, he was just so exhausted that as we were cuddling he looked at me with pure guilt and whimpered as drops of pee spurted onto the new bed covers. So now here we are. Late at night with all the blankets and sheets in the laundry with some form of dog pee on them.

Sometimes, Jeph or Riley will get too wild or too demanding or just plain too wolf-like and they get a brief time out. But they are not the only ones. I've noticed that when I take my own time outs, I can handle the stress of puppy parenting a lot better. My husband has been insisting that I take my baths that I am told by doctors are essential to my healing. So every day this week, he has taken Jeph to another room and I have sat in a muscle-relaxing, toxin-sucking bath. Riley is my service dog and she stays with me during baths in case I need her, but she is very quiet when she is working and it is easy to relax and to try to calm my nerves. I also have been relying on Riley's older sister skills. I have been letting Jeph and Riley outside and actually closing the door behind them and only glancing occasionally through the window to make sure they have not tunneled under the fence. Riley is taking pride in taking care of Jeph and teaching him how to play and investigate outside. She also has been using him as her own personal itch-reacher. When she cannot reach a spot, she indicates it and he bites into the spot until she licks his head. It's adorable and weird all at the same time. But I digress. Anyways, when she takes Jeph on an outdoor or indoor adventure, I get a few minutes to breathe and re-focus my mind. These "time out" moments are heavenly, and I hope to continue to find them.