Not Going to Happy Birthday It

I know even the most average of people with loving pasts get anxiety about their birthday. We want it to be this incredible celebration and really happy day, to find disappointment. Maybe people you wanted to remember didn’t or someone you really love got you a gift leaving you saying, “what??” as it feels like a betrayal that they didn’t know you well enough.

Tomorrow I turn 43. I’m dreading it. I’m still in the hospital and feel people will remember because Facebook will tell them. I have spent so many holidays and birthdays alone, especially this past year as being sick has excluded me in my ability to be festive. How do you celebrate when you are just trying to figure out how to make your body work enough to get a glass of water?

Anyway, the typical birthday dread has been setting in for over a week. It gives me nausea. My mom would throw her worst of the worst at me to remind me that I was useless, stupid, evil, unloveable, etc. I’m not going into the details of what she did, but I want people to know if you have sexual trauma from your mom, you aren’t alone. You can email or comment if you want support or need more. It’s a horrible thing to overcome feeling like if your own mother hated you so much, how could anyone have love for you. SHE was wrong, not you. My lack of connection and attachment to my mom messes with my self concept multiple times a day. I just have to build myself up and recognize that there are some people who think I’m pretty amazing. But missing having a mom is something I will grieve everyday of my life.

Anyway, that was an aside, but felt it was important as I wish someone would have told me that experience in my early trauma treatment.

So back to birthdays. My family would throw me a beautiful birthday party with presents and cake. I remember early on thinking what a sham this party was an elaborate presentation orchestrated by my mom to show I was “loved”.

So probably makes sense why my birthday is a disaster. Instead of feeling unloved and like I have to put on a happy face tomorrow, I’m going to celebrate that today is the last day of my life that I’m 42! I think that is where the rite of passage lies. I’m going to feel good today and appreciate that I’m alive, making it pretty well, all things considering, and love what makes me unique.

Tomorrow I’m going to sit with grief. I’m going to be sad without any judgment. I’m going to feel and feel and feel. It’s still going to suck, but it’s going to be authentic. I hate my birthday. It makes me sad. It really makes me angry. I’m going to feel that. If I’m lucky to have some good conversation with friends who celebrate me tomorrow, I will accept the welcome break from grieving.

You don’t have to do what I do, but if you want to celebrate on your birthday, make sure you tell people. It’s pretty low in statistical probability that you will get a surprise party. If you also want to honor yourself, do that. I might next year!

Nonetheless, happy last day of 42 to me!!

And a huge happy birthday to you no matter what day it falls on. I think you’re pretty great!

Love

Lizzie

Truth is, I’m scattered

Sometimes things feel like failure, but may end up as new beginnings.

I’ve been back in the hospital for a little over a week now. It’s been crazy. I finally got total and complete validation for a neuro immune disease I was diagnosed with almost exactly 3 years ago called transverse myelitis.

I think the neurological community thinks it’s something you get over after a few months once you learn to walk again and the paralysis wears off. I did get past paralysis, and I did walk again. I went back to dance. I worked at a job again where I brought meaning to people’s lives. I started over.

Unfortunately, I was falling apart by falling frequently, breaking some bones along the way with those falls, having my legs go numb, and plenty of weird trembling that my coworkers would laugh that I was shivering in the Texas heat of summer. I’d go to work all day with these symptoms and unable to eat as food would make me really sick, so I got my rest in the emergency room overnight just in time to go back to what I thought was home to shower and work again in the morning.

Looking back, it was pretty incredible I sustained it so long. The primary care then treated me with antibiotics as he was sure I had a bacteria in my gut. After not getting better, he joined the bandwagon of “she’s just a crazy hypochondriac”. I was definitely crazy. I was living in some unbearable circumstances that would have made the most sane crazy. I was sick and I had gone home to my family. That’s what you do, right? Family. A word or feeling I’d been chasing for a lifetime.

A year later, I was diagnosed with celiac disease and nearly two years later, I have received validation for lots of crazy symptoms as being a result of my transverse myelitis, spine issues, and a bit of the discomfort of being treated so poorly by much of the medical community for 20 years.

My angel doctor, as I now refer to her, has pushed me harder physically and even harder emotionally. I’m doing wheelchair shopping, but what I’ve really had is incredibly painful growth. She told me last night to sit with my sadness and very much like meditation, I wasn’t supposed to analyze, I was just supposed to feel. I was also able to sit with a label I’ve been fiercely saying isn’t true, “crazy”.

So I sat, and it hurt. There are honestly no words for sitting with sadness. I recommend anyone sit with it. Do a sadness meditation. If you are having trouble feeling your feelings, sit with it. You could also have a joy meditation or anger meditation or any emotion you avoid, or explain away with fancy words as I do.

I thought I had feelings. I thought I had overcome, but what I had reached was complacency and numbness. I needed to be pushed outside of everything comfortable to me.

Maybe you would wonder why feeling so incredibly uncomfortable would be positive? I still feel like I’m in a state of constant feeling. It’s raw and not natural and I’m hating it and loving it all at the same time. I hate it as numb feels simple, but numbness gets you nothing. Numbness makes me feel so sick that I stop seeking out my joy. I haven’t been reading. I haven’t been painting. I have been dealing with the overwhelming symptoms of a disease no one could recognize was not only taking my life, it had captured my spirit that it locked in the box of my room.

My sadness has come from realizing that a lifetime of self limiting beliefs snuck up on me and shoved me down a hole. You can’t do anything in a hole. You can’t experience when you are surrounded by dirt that starts to cave in just enough to give you the fear that every goal you ever had to live a life that wasn’t about trauma had all come back to you.

As for sitting with the label of “crazy”, I didn’t do it exactly right. I actually thought about that one. I realized that it’s absolutely true. I don’t watch tv, don’t care for movies, you wouldn’t catch me getting take out. What you will see me doing is being a crazy health food nut. You will see that I’m reading 8 books at once. You will see 4 different canvases with started paintings in my living room, you will see nothing matches in my house, yet blends in the best harmony, if you know me personally, I will send the longest rambling texts ever (sorry friends). And most of the crazy you won’t see is how deep I feel. You won’t see the 7,000 ideas I have for creative projects. You won’t see my desire for a piano and a violin as I just want to create that too from a past that may remember. You won’t see the buzz that is constantly going in my head. You won’t see the metaphors that go on and on once it gets in me. Sometimes I feel tortured by thoughts and ideas and creative bursts. You won’t see the physical pain of not getting things out. You may see my disappointment of when I discover cool ideas and you give me that look like you’re crazy. (My current obsession has to do with the social networking of trees and how the forest has a language that I know as I’ve heard it).

So my title had to do with being scattered. I’m so scattered I feel a pressure to talk to nurses that clearly have more to do than me exclaim about trees.

So scattered, but it’s not entirely my fault. Im on some crazy neurological meds that may work out or just may enhance the crazy.

Anyway, I’m just going to embrace that I’m crazy and I don’t do things the way others might. I’m tortured by constant thoughts, but also love that I always have new ideas.

Is anyone else scattered or crazy or feeling something so deeply that you don’t know if you should run from it or run deeper into it? I’m feeling alone in this.

Tomorrow I go home to face a new life of using mobility aids while I leave my angel doctor behind to do what she does. I’m hoping she pushes people regularly like I have been pushed. I hope someday she will understand my huge gratitude for her and the hours she’s spent with me pushing me to grow.

Really I’m going home to grow.

Love an extremely scattered,

Lizzie

New Hope. New Joy

My last post was pretty sad about being written off by another doctor, but as we all have to remember that after darkness, light has to come. It always happens. It’s nature.

After that neurologist totally wrote me off a couple days ago, I cried all night as I am still basically paralyzed without treatment. My regular medical team has been trying to figure it out, but it’s been complicated.

Yesterday, this doctor bursts into my room exclaiming, “I have transverse myelitis too!” I was diagnosed with transverse myelitis 3 years ago, which is a neuro immune disease that causes lesions on the spinal cord and demylenating of the nerves causing paralysis. My initial paralysis was temporary. I walked pretty well after 6 months, but I’ve always had bouts of paralysis and fatigue that no doctor has been able to really explain, even if they were trying really hard.

My diagnosis of transverse myelitis has been disputed, then upheld, then questioned and dismissed, even though I KNEW it was causing me problems. This wonderful doctor studied YEARS of my records, even before my diagnosis to try to get a picture. She absolutely said I have transverse myelitis.

Maybe you would wonder why I would be so thrilled with the news? It’s not so much the diagnosis, but as she lives it, she knows how to treat it.

I’m lying in the hospital with one of those bouts of paralysis now. The doctor told me she is going to push me TODAY to do things I never imagined. She knows the proper physical therapies, medications to treat the nerve pain as well as the debilitating fatigue that accompanies it

I have been lying in bed (mostly) for 14 months barely able to move most days. Today begins a new journey of movement and life.

I live in the mountains. She told me of an adaptive rock climbing group, a women’s wheelchair basketball team, and says she regularly hikes FAR with her hand crutches. She also says she takes her crutches to Zumba, yoga, dance classes…

It’s going to be me. I’m going to move. I’m going to push myself to get out. I’m going to be independent. I’m going to be wheeling around in my new wheelchair that I’m actually excited for.

Some words of wisdom she shared with me that I thought might be useful for anyone, especially people with trauma or chronic illness is that she talked about properly filling your cup. She says hiking and Zumba fill her cup. Being sedentary and not getting out on the days it’s harder drains her cup. She told me I’m going to have to figure out what keeps my cup full. I know blogging does! I’ll figure out the rest too.

Nonetheless, this is the first day in an exciting journey for me to go from being chronically ill to actively disabled. Overcoming so much of my CPTSD and now having an active life is more hope and joy than I’ve ever experienced.

Find a bit of joy that’s happened to you, whether a friend sent a nice text, or you’re wearing your favorite shirt, or you get to eat something yummy this weekend, or you just have some peace.

I would also love if people would comment or email or text me what they do to keep their cup full.

With much love, gratitude, hope, and belief in miracles,

Lizzie

(My picture of my waking up this morning was my little smile knowing my life is changing a lot beginning today!!)

Being Written Off is Hard by Doctors

I’ve been extremely lucky this past year in meeting doctors that have been so helpful. Unfortunately, I sit in the hospital right now so written off that it’s unbelievable. I think this neurologist and I are living in separate realities. I wrote this poem of sorts to justify the pain of not being believed or a doctor thinking it’s in your head as I just needed to get it out. I’m hurt. I’m feeling embarrassed. I’m feeling like “why bother”. Luckily, I know why I bother and as I head home more disabled than I’ve ever experienced, I’ll have to constantly remind myself of why I bother. That’s the important part. Remembering that a doctor or any person doesn’t have the ability to wipe away your truth or take away your reasons to continue. In fact, we should be lifting each other up, especially a medical professional. If he thinks I’m crazy, then at least give me treatment for that, right??

So this is for all my friends of the chronic illness community who have ever not been believed or for anyone else who is struggling with feeling invisible today. You’re not, by the way.

Love

Lizzie

Bruised knees April 11, 2019

I hate that you don’t see me when I fall

When I bruise my hips

Break bones when I’m vacationing far away with my child

I hate that you don’t see me crawl

To the bathroom on days I’m too tired and weak to stand

I hate that you don’t see my parched lips

As water is so far away and falling scares me

I hate that you don’t see me curled up

With the hunger pains of starvation as my body feels paralyzed and so tired

I hate that you don’t see me wincing in pain

And literally crying out as the electric impulses and shocks in my body

Become just too much

I hate that in those moments you don’t see my young sons worried face

As he can see his mom in agony, but I actually wish he didn’t see that part of me

I hate that you don’t see my pain of feeling like I lost my motherhood to illness

That something I treasure so much is gone

I hate that you don’t see my sons tears or worry as his mom slowly deteriorates

I hate that you don’t see

I hate that you don’t see me explaining to you what has made me better

What I need

I know my body by now

As much as she betrays me

We have become good friends and I recognize what I need

I hate that you can’t see Im a woman of integrity

I don’t come to hospitals to play around

Or for attention

I come for help at the urging of a doctor who believes I need help and believes me

I hate that you don’t see me in that I’d rather you be forthright

Rather than lying to my face about treatment that isn’t even going to happen

I don’t appreciate lying

Transparency is what I appreciate

In seeing you

I realize you see nothing about me

You can simply “sign off”

While I go back home to try to care for a body

That crawls, is parched, is hungry, falls over, hurts, yearns to be a mom

You can move on to forget a patient who has huge battles ahead as

You never saw me

Cycling

(This was a note a friend keeps pinned in his cubicle from their dad. He texted it to me yesterday. I think I needed it!)

I love the cycles of nature. They remind me that there is no permanency. They show me that was once light always turns dark, but in turn that dark always turns to light.

I’m usually a light person. No matter how many awful things have happened, I am an optimist to my core. Thank you for that!! When I stray from optimism, I feel wrong. It’s like I’m wearing the most uncomfortable clothes that are also the wrong size. It just feels not organic to who I am.

It’s just been a series of negativity lately. Instead of being a woman who enjoys the sunrise, I couldn’t wait for sunset. I needed the dark. I needed to just honor that I feel bad.

As is my nature, I’m always pushing myself to be better even in my pain. I decided I wanted to walk in my backyard. It’s quite large and circling it can be relaxing. Problem is my legs are fickle. The right one likes to randomly go numb, then I fall if I don’t have my rollater.

Feeling disappointed as I really wanted to go outside, move, and appreciate the darkness, I noticed my old hiking poles by the back door. Staring at those poles reminds me of times I could walk REALLY far, but without appreciation. The sight of those hiking poles torture me, but they stay where they are.

I grabbed those hiking poles, adjusted them for my height, and started to walk in the backyard. I was putting all my weight on them, but I was walking in a circular trajectory and my two little dogs were following close behind. I found their ball, started throwing it for them and found myself giggling out loud at their play fighting and the irony being held up by my anger sticks. Fresh air turned me into a little light outside in the dark.

When I really count the negative versus my hope, my hope far exceeds anything bad or negative.

A dear friend said to me today (I’m paraphrasing a bit) “Lizzie, you do so much that’s successful with so many hardships, imagine what you will be able to do when you get treatment and feel better”. Probably the exact right thing I needed today.

Darkness is temporary. Where I’m at, the sun will be back in less than 12 hours.

I say honor the dark times. It’s very important to recognize when you’re sad, angry, not yourself, etc. I also say honor the light. Don’t forget it exists even when life seems bleak.

Love

Lizzie

Don’t Be Lost in Negativity. I Wish You Peace.

Do you ever notice that when something negative happens, which is usually an interaction with another person. It can be anyone from the grocery clerk, to your boss, to your partner, to a friend. Anyway, when this negativity happens, I find my heart pounding, my stomach turning, and that horrible spinning of anxiety in my chest.

It happened to me. Before I was in tune with my body, this would have turned to panic or something pretty awful. Today, I noticed what my body was doing. I had a negative interaction and found I was feeling like that little girl of my childhood who had to just been chastised and accused of things and that little me knew I couldn’t respond. Little me knew that many people who appear to attack don’t care what you have to say. No one cared about my voice. I learned to just be silent. So today, I noticed myself feeling small and went inside to do some self talk that I am a grown adult who is mentally strong and safe and has a voice and is surrounded by loving people. I’m not alone to be chastised. I took a few very deep exhales of the negativity that had just been put in me (you don’t have to allow it, but I’m working on not letting everything affect me) and went about my business.

The important thing is that I noticed what was happening in my body. I honored that I felt scared. I did the self care of breathing and was able to be really ok. I then took the steps I needed for me to be safe from this interaction.

Upon returning home, I used the “loving kindness” or “metta” meditation. Meditation is huge in my healing. I’m going to post a short video below about this particular meditation as it has become so encompassing in its helpfulness in my life. I use it for me, but I most often use it towards others that are hurting or sick or making my life difficult. Sending love instead of hate manifests love in your life. Maybe not from the person you’re sending it to, but it will happen.

Love

Lizzie

I hope the video works. Let me know. Entering new technology realm for me!

The Reality of Life (a bit more gratitude continued)

Every time I write, I put myself out there a little bit more. I work hard to promote this blog as people have personally told me it’s important to them. It’s hard to toot your own horn when you’ve been called “stupid” and “worthless” by the people who were supposed to build you up. It’s sad and hard, but that’s when you have to recognize your own worth and work daily to recognize it.

Anytime I ask someone to read my blog or post it to Facebook, I feel a little guilt for making people read it. Then I realize that those are the old messages and even if people don’t care for what I have to say, it’s ok. I don’t like every book I read.

I went out on a HUGE limb for me and shared it with my primary care doctor yesterday as I mentioned how grateful I was for her in it. Her response was nothing less than incredible.

It’s a huge reminder to thank people who go out of their way. Take the time to applaud instead of complain. Positive energy sent out will always come back to you eventually.

The picture I posted above is really my life. I can barely get up. I’m really weak. I keep falling over. In looking at this picture though, I see gratitude. Those two special pups. My feelings of safety. Knowing I’m going to get treatment soon as I took time to say thank you. I also love my colorful bed. For a place to be stuck, it’s not so bad. I am in huge physical pain, but I’m also in huge comfort. I know it’s paradoxical, but it’s happening.

The hardest thing for most trauma survivors to do is reach out at their lowest. I reached out. I felt my sadness, anger, and grief, but also honored what is good in my life. People in all areas reached back. I feel surrounded by a cushion of love even though I’m all alone physically. My people are with me in spirit. You know I hate cliches, but it’s true. I feel my friends near and far holding my metaphorical hand.

Did you know I’m reaching out to hold your hand too? We don’t have to be alone even in our solitude. I may not know you, but I’m reaching out to lift you from your own sadness and trauma. You can always reach back.

In love and gratitude

Lizzie