Sunday, March 26, 2017

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.

Friday, March 17, 2017

10 Happy Things

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

So. Here's 10 Happy Things:

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

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

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

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

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

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

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

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

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

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

Love to you all.


Wednesday, March 15, 2017

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.

Monday, March 13, 2017

The Good, The Bad, And The Jeph

I've been officially diagnosed with PTSD. I was right. This is bad news because, well, obviously I'm going to have this for life and it really, really sucks. This is good news because it means I have treatment options and support groups and everything I need to cope. I started a new mood stabilizer on Saturday, and so far the only side effect I've experienced has been my eyes jumping around and not focusing as well as I'd like them to. But my mood...guys...my mood swings have gone dramatically down in just three days of this medication! So good. And the noise in my head has lessened maybe five percent, which is a small but noticeable difference. 
In not so great news, I have something else besides PTSD. The doctor is not certain what it is yet, and wants to treat the PTSD first and foremost so that she can get a more clear picture as to the symptoms that are part of the separate disorder. She warned me that it is one of the bad ones. The ones people hate to be diagnosed with. She comforted me with the knowledge that whatever it is, she will find it out and there will be treatments for it. She also ruled out Schizophrenia, which was a huge relief. She said it is probably a dissociative disorder, and that it is not at all unusual that a disorder like that accompanies the PTSD. My brain is resorting to child-like coping skills to deal with the overload of trauma messages it is processing. Children run away from problems, make up stories, ignore things until they go away, etc. and my brain is doing these kinds of things without my knowledge, causing black-outs, voices, and all the other terrifying things that aren't the horror that I'm already dealing with caused by the PTSD. It is also possible that the PTSD diagnosis will eventually be changed to C-PTSD, or Complex Post Traumatic Stress Disorder, as I've had several traumas and not just a singular event. Also, my Night Terrors have become more pronounced, with me scaring my husband half to death by waking up screaming bloody murder. We're not sure if that is a side effect of the mood stabilizer or a new symptom, but it's not very fun for either of us. The dogs are both so used to me that they just lift their heads up like, "You good, bro? You need us? No? Okay," and then they go back to sleep.
SPEAKING OF DOGS! Jeph. You guys. Jeph. My little three month old fur baby has started taking care of me during attacks without any training whatsoever from me! How is this possible, you ask? Riley trained him. That's right, folks. Riley showed him what to do time and time again and he learned. On Saturday, I was lying on the couch in such a way that Riley couldn't quite get to me without injuring me. She nudged Jeph and he put his toy down, hopped up on the couch, walked up my body to my face, and licked my tears off. He noticed some tears had gone down onto my neck and he got those, too. Riley made a sound at him and he then laid down on me and kneaded my body with his head and paws until I stopped crying. He stayed on me and whined until I pet him, calming me further. Finally, we fell asleep together on the couch. Riley fell asleep on the floor, confident that her human was taken care of. He also insists I pick him up when I am pacing around the house, trapped in a manic episode. What a great little guy! He's still a little terror, eating the couch, knocking things off tables, eating laundry, and jumping up on me with his sharp little claws. But he is also coming along so well with his training. He is learning to walk by my side in a harness that he only hated for a few minutes. He is learning to be a calm, well-behaved little one. And now, thanks to Riley's guidance, I know he can perform some service dog tasks, and I'm eager to see what he can do when I actually train him!
It's been a weekend, y'all. But I'm hopeful for a future that will be difficult but doable. A future full of hard healing and many, many puppy cuddles.

Wednesday, March 8, 2017

Psych!

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

Thursday, March 2, 2017

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.

Wednesday, March 1, 2017

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.