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

Things Have Been Rough, so Here’s to Me Using Some Gratitude to Try to Help Myself (and others)

Things have been so rough. I was getting used to a new normal with chronic illness, but the bottom dropped out of that, so now Im dealing with an even newer normal that is much more difficult.

It has frankly put me in a funk. My son and I also had a terrible vacation I was gifted for our birthdays. I never wanted to see my precious 11 year old see me screaming and crying in pain as driving hurts so much. Well everything hurts. My situation is pretty bad, but I need to refocus on what is good.

When I was really working on my childhood trauma, I used a lot of gratitude for my current day circumstances to heal. There is ever increasing research that gratitude can actually change your brain to feel more positive. I definitely need to feel more positive.

I’m grateful that I have a small circle of friends who check in on me regularly and within that circle are a couple who can absolutely take me at my worst and do the most loving things that reinforce it will be ok no matter what. It will be ok because I’m not alone.

I was alone. I’m still alone in many ways. When I left trauma treatment, I had no one except the connections I made there. At that time, they were in no position to help me. I still leave the “emergency contact” blank at hospitals and doctors offices, but I have worked very hard to cultivate a small circle, and I am so incredibly grateful for them and not to have that feeling of being so alone anymore.

I’m grateful that despite my illnesses, I have a clear mind that can continue to be creative, and I can use my voice.

I’m grateful that I’ve been able to meet so many people over the course of my lifetime. Most of them are gone as time, illness, trauma, and toxicity takes them away, but for those moments they were part of my life, I learned something from them.

I’m grateful that I have a couple people in my life that are pushing me very hard to explore my spirituality and take solace in something greater than I, whatever I decide that is eventually. Even though I’m a neophyte on that journey, it gives me comfort.

I’m grateful that random people I haven’t talked to in a long time send me messages of hope and encouragement. Those moments are extremely special for me. Those moments keep my trajectory going forward.

I’m grateful that I have just enough. Yes, I negotiate to not pay all my bills every month as I don’t have that much, but the electricity is still on. I still have hot water, and I feel safe in my tiny home.

Grateful to feel safe!!! So beyond grateful for that one.

I’m grateful for having a week with my son as I don’t see him much. Even though it was disastrous and not very vacation like, we got to talk a lot. Even he said the best part was just being together for so long.

I’m grateful for the two best rescue chihuahuas ever. They give me so much comfort and so many laughs when I need it most. I highly recommend getting a dog if you feel alone and are able!

I’m grateful for caring doctors who are committed to me and will listen to my hope as well as hand me a Kleenex when I cry in desperation.

I’m grateful of course for the basics. I know too many people who don’t have it. My ability to keep these basics are tenuous, but I have them now and feel if I’m grateful for them now, I don’t have to worry about the future, at least not for now.

I’m grateful for this blog. Thousands of people have stopped by to read pieces. Knowing people actually take time to read what I write is incredible. I’m especially grateful for my regular readers who leave loving comments or send inspired emails.

I’m especially grateful to be on a path to authenticity. Im grateful that i finally appreciate my uniqueness. I’m grateful I can stand up for myself even in a weakened physical state. I’m grateful for being loving and compassionate despite my trauma. I’m grateful that my trauma doesn’t rule my life anymore.

Lastly, I want to say that I’m grateful for my life. As someone who was either actively suicidal or making attempts, being grateful for my life is an incredible step.

Writing this has completely shifted my mindset from angry and heartbroken to more calm and peaceful. Try some gratitude, even if it’s the littlest of things. Focus on that for a bit and see what happens.

What are you grateful for today? Leave it in the comments. You can always remain anonymous!

With much love

Lizzie

A New Normal I Just Can’t Get Used to Today

I’m usually super inspiring and see the beauty and wonderful lessons I’ve learned from having a childhood that had horrible trauma and my subsequent chronic illnesses. Today I’m not ok. I’m feeling a little mad and a whole lot of sad and grief.

In comparison to before I became really physically ill, I saw my son usually 50% of the time with periods of where he was with me full time. I rarely see him now. I’m lucky if it’s once a week. I love him beyond what I’ve ever experienced and my ability to love him transcends his imperfections, which I used to think if he was misbehaving, it was a reflection that I was a bad mom. What I’m trying to say is I’ve really worked hard on becoming a mother who unconditionally loves her child as I certainly never learned it from my mom. Being around him is light for me, so rarely seeing him is painful and hurts more than I can ever express through words.

The whole reason I speak of all that is I was gifted money for both of our upcoming birthdays to take a very modest beach vacation. Our destination was about 8 hours drive from the house in the direction of Southern California. About 5 months ago, we took a beach vacation and while it was difficult for me with my chronic pain and fatigue, I did it with relative ease.

We are day 4 into our “beach” vacation. We haven’t seen the beach. I’m cranky as we never made it to our destination as my chronic pain is now debilitating and my fatigue is worse than I’ve ever experienced (bad gluten exposure. I have celiac disease). Nonetheless, I feel horrible and crabby and like a horrible mother as I haven’t come through on anything close to a vacation. He seems content to be sitting in a budget motel watching tv, but I’m not ok with it.

When you really start to accept that your chronic illness means it will never go away and you will be sick forever, people talk about experiencing a “new normal”. I was good with my new normal that meant I had to rest a lot, had pain I could decently manage through gentle yoga, an anti inflammatory diet, and some exercise, but could still manage to push through to be spontaneous just enough to not feel crazy from being sick and stuck in my room. I could at least pretend that all was well in my weekly visits with my son. I could appear “normal”.

I can’t hide it. I use a mobility aid most of the time. I fall over, HARD, often. I’m facing a lung and bone marrow biopsy in the near future to find out exactly what all these tumor like growths are throughout my body (we are pretty sure what it is, but I don’t want to announce until it’s certain).

I worked SO hard to overcome my C-PTSD and continue to work on it. I feel mad that I’m now so sick that I can’t reap the benefits of healing emotionally. I feel scared that I went from uncomfortably ill to rapidly moving towards totally disabled. I’m just feeling mad. I’m feeling it’s unfair. I’m grieving for all my friends with chronic illnesses that aren’t readily understood and the financial ramifications of being single, homeless, no way to work, and worse. I mean I am lucky that I have a safe home and generally just enough, and when I don’t, I know some generous people.

So many people with serious trauma are really physically ill. The connection is real. It’s hard and today I’m saying “why me?” Today I’m saying it as I see how my precious son is affected.

I have to remind myself and all of you that we didn’t choose to become sick. We didn’t choose our trauma and if you’re lost in mental illness, you didn’t choose that either. I hope I can become something of all of this to pay it forward to people like my dear chronically ill best friend/chosen sister and so many others as none of us should have to be this way.

I’m lucky that I’m just on a beach vacation gone wrong. I just grieve that my body is declining. I’m afraid I won’t be able to reach my goal to be service to others through my writing.

I won’t stay in this emotionally ugly place long. I’ll go hug on my son. I’ll make him take a short stroll in some nature nearby. After all, I happen to own a rollater with huge tires that can go “off road”!

I’m just sorry for me today. I’m sorry for you, and today I’m especially sorry for our children.

Ok. Time to engage in a bit of self care.

Love

Lizzie