The Aftermath

It’s been one week and two days since I tried to kill myself. It’s getting easier to talk about, but as reactions pour in, I find myself overwhelmed by different people’s feelings and my own. Some have responded calmly and quietly; a gentle hug, an “I’m glad you’re here”. They tend to be the ones who have been here before. They’ve experienced this aftermath, they know the quiet is the easiest to manage.

Others are louder. They are shocked and scared and their emotions are wild. I feel frightened and cornered, ashamed and burdensome. I want to crawl away and out from under their scrutiny, away from their fear and grief. There’s anger in their worry and it feels as if I’m drowning.

Then there’s me.

A small, barely flickering flame has taken up residence here in this broken heart and mind. I donated my birthday to the American Foundation for Suicide Prevention and Project Semi-Colon. I let my post about my attempt begin to circulate a little more widely so that others in my position might see it and feel a little less alone. A project that I had considered over a year ago that had no direction, no purpose, suddenly falls into place; a non-profit dedicated to collecting and sharing resources for at risk individuals of all ages. A single source for information, assistance, advocacy, and education for those impacted by suicide. A place for loved ones to honor those they’ve lost to it, a place for those facing it to find each other and grasp each other tightly.

A few I’ve shared this with have urged me that I’m taking on too much, that I have to be careful.

“Maybe when you’re done with school.”

“Give it a couple years before you take on any more.”

I don’t have the promise of a couple years, though. I don’t have time on my side and the feeling that every second wasted just thinking about it is another second that someone could be getting help they need, but couldn’t find before. If not for the sake of other people, I need this project because the world needs as many lights as it can possibly hold. One single light extinguished because that person felt as if they weren’t worthy is one too many.

Reach out if you need someone. I’m throwing the link to the suicide hotline on this post again if you feel like you truly have no one, but I promise, you are not alone.

There’s a whole tribe of Lemons and Spoonies with you.

https://suicidepreventionlifeline.org/

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Help!: Giving Up and Taking In

So for lent, I gave up a few things.

I gave up Pepsi, because it’s something I crave and enjoy daily and Lent is supposed to be about resisting temptations.

I gave up eating out because we’re not in a very good financial situation and going without something as frivolous as eating out was something that would benefit us and help me shed some of the guilt of not contributing financially to the household because Lent is supposed to be about trusting God.

The last thing I decided to give up was my blame.

Every person who has ever struggled with mental illness or chronic illness, especially those with depression or anxiety, know how heavy blame is. Something goes wrong or times get hard and your mind turns and whispers “it’s your fault, you know”. At least mine does. Mine is especially loud right now because we are struggling to make ends meet. We are struggling to feed ourselves, to pay the rent, to pay the bills, to feed the cats. And I’m the reason we’re struggling.

Now yes, I know it isn’t solely my fault. We moved very suddenly under terrible circumstances and it was a blessing that we were able to move, but it strained us, and on top of that strain, my doctor is in Cleveland Clinic, a state away from home. This doctor, this hospital that’s over three hours away is where we will find answers and methods that will keep me alive longer. But dying, or at least living with chronic illness is not cheap. Neither is gas or food or hotel stays. Medical bills are definitely not cheap.

So I say, without flinching, that some of our struggles to stay afloat financially are my fault.

Multiple people told me to start a gofundme and I fought against it. I fought not only because asking for money is hard and uncomfortable and our society teaches us very early on that to need help is to be weak and I haven’t quite unlearned that wrong lesson, but because in my mind, who would want to help? Who would see the campaign, my begging, outstretched hands, and want to give me money?

I fought, then I thought, then I prayed. It was in prayer that I realized this was a temptation that I swore I would resist for Lent. I would not blame myself, but instead give love and accept love for myself and from others. When the lazy, indulgent hours of Fat Tuesday rolled into the grey morning of Ash Wednesday, I vowed to give up self-loathing and replace it with loving others with my whole heart.

And loving others meant loving myself enough to admit that, no matter what I want things to look like, the truth is that I need help. I need help and there are people in my life who want to help. Because they love me. Because they care for me and mine and they want to give us our best chance.

So I prayed for strength over my own mind, over the voice in my head now screaming “stop that, you are not worthy”, and I reached out. I created the page and said, in a weak but steady voice “I am worthy of help from those who are willing to give it.” I am worthy of love and its many expressions. I am worthy of God’s love and He will not turn me away when I need Him.

This isn’t, by any means, my asking any of my readers, any of you, to give me money. This is me, raw and laid bare, telling you that you are also worthy. That there are people who want to help you if you can summon the courage to ask.

If you want to help me personally, here is the link to my campaign on GoFundMe, but more importantly, if you want to help anyone, donate to a charity that means something to you, donate your time to your community, or even just ask a friend or neighbor how they’re really feeling, if they need help. Give up the idea that needing help is weakness and offer help in any way you can to anyone you can.

I’m here for you, Lemons and Spoonies, and I adore every single one of you.

 

 

Cleveland Clinic: Appointments and Shenanigans

I’ve been hard on Ohio. It isn’t that bad, really. The roads are better than Michigan, but that’s not really a claim to fame. Forest trails are in better shape than Michigan roads. We arrived on the Clinic Main Campus about an hour before my appointment, but confusion over how the hell to park put me right on time. The main building stole my breath away. It was huge, beautiful, and all at once, I was so overwhelmed by not just the building itself, but the realization that, with time, this wouldn’t stun me anymore. It will eventually become a home away from home.

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The main hospital building!

I got into my appointment and met my new doctor. We clicked pretty much immediately as he asked tons of questions, answered tons of mine, and performed dozens of physical tests to determine how my neuropathy is progressing. The short answer, it’s doing what he expected it to be doing. My reflexes are both over and under compensating, my heart rate is rocking out its POTSie self, and my blood pressure managed to confound both the assisting nurse and Dr. Shields as it remained the exact same no matter what we did while my heart rate went crazy.

Then came the time to schedule all of my tests. We were braced for the onslaught of testing needed to find more information about my conditions and had booked our hotel through Saturday to make sure we could do everything needed, but scheduling had other plans. Only basic lab work was available to me. We already have another trip booked for May, where I will spend roughly 10 hours straight in medical testing, starting at 7:30am.

It’ll be a long day.

I was a little disheartened by this, but Nikki had the remedy. We found one of the many restaurants hidden in the main building and she showed me all the cool things she found while I was busy being  quizzed by Dr. Shields.

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I wanted to touch it!
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A wall of silver.
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This was Nikki’s favorite.

After eating and exploring a little, we headed to where I would get lab work. It was then where I was asked to sit perfectly still for 30 minutes in an uncomfortable chair, knowing that at the end of the 30 minutes, I would be faced with needles.

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So. Much. Fun.

After an agonizing 30 minutes of not even being able to swing my legs or fidget, the wonderful lab tech came in and confirmed who I was and walked me through what we’d be doing. As she spoke, however, I found myself becoming more and more concerned about what she was doing, not what she was saying. I knew a blood draw was part of the lab work, but I watched with horrified humor as she seemed to pull vial after vial out.

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I don’t need any of my blood, right?

It took one poke to each arm, but we managed to fill every one of those suckers. After the adventure of having all of my blood stolen by Barb the Impaler, we went back to the hotel where I promptly devoured almost all of our snacks and fell asleep.

Day two, now unencumbered by testing, started with food at the hotel bar, then we set off to Nikki’s touristy place of choice: The Rock and Roll Hall of Fame!

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In hindsight, I should have sat in the letters. 

They don’t really like you taking pictures in the Hall of Fame, but there was one exhibit we couldn’t resist. In pure good luck, we managed to visit at the time one of my all time favorite albums was being featured as their limited time exhibit.

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All we are is just another brick in the wall.
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You’ll never get your pudding if you don’t eat your meat!

To put it bluntly, it was cool as hell. Real props from Pink Floyd’s The Wall, along with Roger Waters’ explanation of what inspired the wall written on intermittent bricks. It was larger than life and I was giddy over it all.

Finally, fatigue got the best of me and we hoofed it back to the hotel for another calm night in. We depart for home tomorrow morning, with the possibility of more adventures.

 

Mysterious Injuries

Life with EDS means getting used to waking up and doing something resembling a status report of my body before I move. In fact, I’m fairly sure if you were to watch me sleep (please don’t, that’s creepy, and Nikki and Pam already have enough pictures of me sleeping, but that’s for another post), you wouldn’t be able to tell the moment I actually wake up because, for at least five or ten minutes, I am laying exactly in the position I woke up in. In those few minutes, I am slowly taking in awareness of my body to see what has changed overnight.

This morning, my hip and knee were out of place and throbbing. These give me a lot of trouble, since I am a side sleeper and get tired of using body pillows, Kit, or my wife to support myself better. My shoulders are sore from the way I tuck them up, but don’t feel dislocated. My fingers, wrists, ankles, and toes are stiff, which will ease up as I move them. This is also when I can start figuring out what kind of pain I’ll be managing that day.

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Kit, the Dopey Valentine’s Fox

Having completed the morning status report, it’s then time to test how my dysautonomic conditions are going to behave for the day. I’ll start moving my feet and legs, trying to coax blood flow to pick up so that, when I sit up, I won’t get as dizzy. Then sitting up and standing, which even going slowly tends to come with a wave of dizziness and lightheadedness. Head into the bathroom and check for new bruises. EDS means I bruise if someone so much as looks at me, so I’m very used to looking like I fell down the stairs.

It was in this step of the process this morning that I noticed I had a black eye and a busted open lip.

I tried to get a picture, but no lighting in the apartment shows either injury well enough to accomplish anything but making me look like I’m trying to be a pirate, but you’ll just have to trust me on this one. I brought this up to Nikki, to make sure that I wasn’t delusional and she immediately poked at it and asked if it hurt, to which I said yes, so stop touching it. Her theory was that her puppy, Zeep did it.

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He even looks guilty.

 

Sunshine and the Blues

I can’t believe the milestones we hit yesterday. Thanks to all of you, Lemons and Spoons has reached over 530 people and hit a new record of 177 readers in a single day. I am awestruck and overwhelmed, but above anything else, I am grateful to anyone taking the time to visit, to read, and especially to follow me on this journey. I have no idea what I’m doing, but you’re trusting me to drive the bus anyways. That takes guts, you guys. Seriously, I’m impressed.

With all this happy going on and these great things to celebrate, my anxiety was put off a little. I was so pleasantly distracted by the nervous excitement of finally feeling like I found what I’m supposed to be doing, watching stats climb, I forgot to be scared.

Nikki and I will be leaving with the dawn tomorrow morning to go to Cleveland Clinic in Ohio for a three day stay. There, I will meet a new doctor who will be reviewing my conditions. There is chatter across many EDS forums about a change coming in how they diagnose and categorize EDS. I don’t know how that will impact me. I will learn more about the dysautonomic conditions and how to better manage everything that is trying to kill me.

It’s hard to describe the feeling, but I know a lot of Lemons and Spoonies will understand. On the one hand, it’s so important to stay positive and optimistic. The mind is a powerful thing and sometimes, it all comes down to how you choose to handle things. On the other hand, however, I don’t want to walk in expecting all sunshine, flowers, and rainbows. There’s not going to be some dramatic moment where the doctor looks at me, runs some amazing new test and says “you’re cured! Be on your merry way!”. At least, if that does happen, I’m going to be extremely skeptical and seek a second opinion.

What I can expect, though, is answers, which is more than I’ve had for quite a while. There’s only so long you can go without them and it will be nice to have someone who has made their career studying cases like mine. I know that he will have more insight into how best to handle my symptoms and how to manage everything in the long run.

Getting home on Saturday will mean a flurry of friends and family all wanting updates. I’ll be doing my best to keep everyone updated as I learn things, both on here and for those directly in my support network.

Wish me luck, Lemons and Spoonies! A grand adventure awaits!

 

Paperwork Paperwork Paperwork

I’m assuming most people reading have seen Monsters Inc., right? We can all call up in our minds the scene where Roz is chiding Mike for not filing his paperwork.

I’m stuck in this scene right now.

I am fortunate enough to be meeting with a new doctor at Cleveland Clinic in the next few days, something I know will be very helpful in finding the best way to tackle my conditions and give myself the best possible chances.

Unfortunately, there’s been something of an issue in getting my medical records to Cleveland Clinic. It isn’t anyone’s fault. Just one of those moments in life where something seems to go wrong, a hiccup in the system happens and it doesn’t work quite how it’s supposed to.

The problem being that it has happened about four times now. Refer to the “About” page where I tell you that Murphy has it out for me. This kind of thing happens a lot and, while not life-alteringly terrible, it is obnoxious and repetitive. Combine this with the memory issues that come with every single one of my conditions and you end up in a funny little snow globe of “did I make this call? Who did I talk to? Have I talked to anyone? Who am I? Who are you?”.

In short, be nice to the office staff in hospitals and doctor’s offices, people. They get a lot of calls from me while I try to find my brain. And my medical records.