Electrical Butterfly Beats

I woke up this morning to something different, something that scared me. I was of course tired and no one ever wants to leap out of bed to get ready to go to the gynecologist, but it had nothing to do with the gynecologist, it was my body.

This morning, I had a minor tingling in both hands and feet. All were numb. It might not make sense how you can be tingling and numb at the same time, but if you’ve ever had a neurological disease, you probably know exactly what I’m talking about. My first instinct is to curl into a ball and just cancel the gynecologist as this feels scary. My usual neuropathy pain is excruciating. This is almost like butterfly wing beats constantly on my fingers and toes with a slight edge of electricity.

I’m not one to just turn over and curl into a ball and forget about life as that would definitely make me miserable, but we all deserve moments of fear and “why me?” So I get up with plenty of stumbling, grab my cane as I was too tired to bring my wheelchair into the house after my wonderful excursion yesterday. I’m thinking maybe between yoga and a short hike in two days I overdid it? A check of my sleep app shows I slept over 9 hours straight, which is definitely weird for me.

I go about my morning sitting in my shower as my house isn’t handicapped accessible—yet, but I get my clothes on stumbling around making an attempt to go about my normal routine knowing I have been diagnosed with progressive neurological muscle wasting disease (why can’t I find my stupid genetic testing I put in a “safe” place) and attempting to ignore that nagging fear in my mind if I’m progressing. God, I just want the normal I have now is all I can think.

Yoga is cliche. Kale is cliche, but I also know they help me personally feel so much better and can tell if I skip it. I do a couple yoga stretches while the dogs eat their breakfast and suck down my smoothie full of kale, spinach, some fruits and lots of healthy stuff knowing kale and yoga won’t fix it, but it could prolong my ability to move.

Two years ago, I went to the gynecologist for the first time in probably 20 years due to having such horrible problems that couldn’t be ignored anymore. Past sexual trauma made me sob through the entire exam two years ago. Today. I show up in my wheelchair, whereas I was walking 2 years ago. The gynecologist asks me about what has happened and my laundry list of diagnoses.

She begins with the breast exam, which I couldn’t handle before, I’m not even thinking about it. We are chatting away about my yoga practice, my book, my meditation practice and soon to be taking on one on one meditation clients, the yoga teacher training school I hope to go to…

At the beginning of the actual exam, she gently asks, “are you going to be ok with this?” I reply, “no problem” as it really is no problem as I don’t even think twice about anything invasive now. I am safe. So as any woman knows that these exams are far from pleasant, but I tell her about my forearm crutches that were made by a woman amputee who wanted to climb really tall mountains and designed them for people for people with disabilities to be able to enjoy the outdoors, and it’s over.

I’m back home again filled with plenty of fear about my fingers and toes being hit with electrical butterfly wing beats. It’s the only way I can even begin to describe it. Maybe electrical butterflies mean transformation? It might not be a transformation I enjoy. Maybe I will lose my ability to use my hands? My feet are fairly useless anyway, so I can’t get too upset about that I suppose. Maybe it’s positive? I don’t know.

I guess if I look at how I conquered the gynecologist compared to just two years ago. I’m hopeful I can conquer losing my hands, if it even comes to that.

Maybe the butterflies are just spending time with me for a bit to remind me of something? It doesn’t make my fear less real, but it does make for a lovely image to counteract the scared. In the meantime, I’ll just be a cliche of kale and yoga.

Love

Lizzie

Acceptance of No Miracle Cure Exists Today: There is Only Life to Be Lived

My Recent Experience if Having Meningitis

Of course I had this beautiful idea in my head of what I was going to say, but since I’ve had the experience of going through meningitis (according to my neurologist), it has completely left me from just 2 minutes ago. Forgetfulness and terrible headache seem to be my lasting symptoms!

I know when I had stem cell injections 2 months and 1 day ago, I never really identified as a sick person. I clearly was. I’m on disability. There’s no chance I could work a full time job as much as I wish I could and desire to. I just kept thinking I would be well. I was given stem cells along with the hope of a perfectly healthy life. I know the medical provider believed it would be true. I was so hopeful.

Before I move into the acceptance part, I will say, the stem cell process has been far from perfect, but I did regain the use of my right hand. For me that’s a miracle. I won’t get into all the details of it, my right hand was slightly functional to an outside observer, but it was actually useless. I was grieving that I was going to have to give up writing as I couldn’t master voice recognition software. My right hand is wonderful and useful and love not even second guessing if it will work or not.

I have had strange illnesses, symptoms for a lifetime. Most people might have been in a medical hospital once, had a surgery, maybe at my age of 43. It’s more likely, you’ve had a visit to the emergency room or a handful. I’ve been admitted to the medical hospital more times in my adult life than I can even remember. It’s mostly been because some respiratory infection, stomach bug, or cold went really bad and had to be there for a week to get stable.

Even with having an actual diagnosis (which is among many), I’m realizing I am sick. I will continue to take great care of myself in the best ways I possibly can. Yesterday, I was determined to go back to my regular iyengar yoga class even with my severe headache as it would be 2 months since I had gone to something that was once an integral part of my life and healing. One particular classmate made a poignant effort to check in on me via email. When I showed up, I was met with lots of smiles and huge hugs. My teacher smiled too and said, “see, we are like a little family”. People probably wrote off the comment, but for someone without family, to have disappeared for 2 months and be met with such joy is family enough for me right now.

You might not care, but I have what’s called an “orphan” disease and basically means it’s so rare that very little is known about it. It’s called CMT4J. I had the wonderful opportunity to talk to a woman on the east coast who knows a lot about this disease. She normalized a few things for me, but it’s primarily been studied in children. While I had symptoms as a child, my symptoms have exploded as an adult like having the immune dysfunction of getting so sick from seemingly minor things.

In not having the stem cells be a miracle cure came a ton of grief, but there was also a ton of acceptance in that I won’t be well—ever. As I sat on my second day of steroid infusions and had painfully bumped my arm as they keep the IV in, I realized healthy people don’t have IVs in their arms for days. This wasn’t a one time thing. I do this every month with my IVIG with an IV in my arm, but I somehow still didn’t feel “sick”. I have bad veins, and the infusion nurses had mentioned possibly getting a port placed. Yeah, healthy people don’t get ports I’m thinking?

My IV arm when it hit me

So acceptance for me brings peace. Doing that above, chaotic painting about my experience of meningitis of being pretty clear in my mind, but I couldn’t talk as it came out a jumbled mess of slurred nonsense was confusing. My emotions took a big hit. My writing stayed clear, so I think for some, it was hard to understand how sick I was making me not understand how sick I was as I would get a moment of clarity. After my IVIG infusion during that time, I had two glorious days where I had energy to go outside. My head still felt like an atomic bomb inside but being in the middle of nowhere felt more peaceful than home.

It was funny as leaving yoga, which tends to be a class of people with various aches pains or joint problems, I overheard a lady say to another, “I did a weird thing yesterday, I stayed in bed all day. I’m so stiff”. It’s where my acceptance of being a sick person really hit me as even in my best times, I HAVE to figure in 2-3 days a week where I stay home in bed as my body won’t function without that kind of rest. Am I just doing nothing? No. I usually get a bit of stretching in, I read my books, sometimes I do a project, I write, I’ll make aromatherapy blends for people, I attempt to reach out.

I love people. Being social is like food for me. I also know that with what I’m managing that being able to do that with any kind of regularity is dwindling. A lot of people I know are very committed to many things, and I love that for them. I realize I kind of live life from the outside looking in. I make lots and lots of observations about how the world around me operates and how I once lived that way too. I’ve wasted a lot of energy the past couple months trying to check in on people, who probably do care about me, but they don’t have an investment in me. I can appreciate the care. I also know my energy is precious and have been saying forever I have to budget it more wisely than money. I’m going to finally honor that and stop pursuing dead end friendships. I had a chronically ill friend when I was in better shape that I was willing to travel to go see when I knew she couldn’t get to me. I didn’t totally understand what was going on just as people don’t understand what is going on with me. I’m ok with it. She got very angry at my not understanding. I’m not angry, I just understand actions speak louder than words. I’ve been trying for months. Acceptance.

I’ll get to a place where people will come by and check in on me without it being a hassle and get to really enjoy my company when I can go out. As the counselor pointed out, I have lots to offer people. I’m also strange in that I don’t watch TV and would prefer a book and to sit lost thinking about my observations about the world that rushes around me and how I can organize myself to get some of my more lofty goals met. Thats where my energy has to be focused right now. I have a book to finish. I was encouraged to do some speaking. Someone is trying to get me into a yoga teacher training school. Why would I spend my energy on friendships that don’t exist? Acceptance.

And true acceptance of being sick comes when you spend time looking on amazon for chemical free disposable bath wipes and dry shampoo as you recognize that you want to get out of the house, but showering everyday is too much energy. If I shower, I can’t go out! Acceptance.

I’ll leave you with this picture that even though I’m sick and physically disabled, I CAN still do things. After my yoga class yesterday.

I always thank the supporters of my blog and supporters of me whether you never have time and you just think about me, I see you occasionally, or you are my designated “stream of consciousness person” or somewhere in that spectrum. I know without some sort of community even with as lonely as it can be as a self identified extrovert, plenty of people wouldn’t be thinking of me or I wouldn’t still be gimping or wheeling along depending if I’m using my forearm crutches or wheelchair.

Love

Lizzie

In the US, We Celebrated Valentine’s Day

There’s no doubt, I’ve been feeling beyond physically crummy and with that, I’ve been emotionally drained. I don’t know how many other countries celebrate Valentine’s Day on February 14th, but we celebrated it in the United States today.

I have readers globally, so I’ll say I can’t explain the exact origin of Valentine’s Day (that’s what Google is for), but in the United States, it’s a day to be with the person you love. People give flowers, candy, romantic dinners, while many in the single world feel less than and less loved, because we aren’t in a relationship with our perfect mate.

Despite being single for most of 11+ years, Valentine’s Day has always been a favorite holiday for me. I have no expectations. I use it as a time to usually tell others in my life how much I love and care about them. People still in my life today definitely deserve a lot of love from me! Not because I’m a nasty person, but I am living a strange life for a 43 year old woman. I am chronically ill with an uncertain future and my day to day knowledge of how I’ll feel is a big mystery.

I woke up this morning with a terrible headache that has been plaguing me for a couple months that my neurologist diagnosed as meningitis. My strong legs from stem cells are dragging on the ground again and waking up where I was enjoying walking, my body fell over this morning. I was told the steroid infusions would kill the stem cells (or some of them), but I guess I wasn’t totally prepared to lose my new grace despite falling over twice yesterday. My wheelchair and I are becoming buddies again. Kind of a bummer. Kind of grateful I have it.

Regardless, I didn’t feel like saying “I love you” to anyone. I was bitter, angry, and generally scared and upset. Then I got a text message from someone I met about 3 years ago that said, “happy Valentine’s Day”. It was a nice surprise. I was happy to hear from her.

Then I could shoot off my super “woe is me” message to my very sick buddy in Florida as she seems to hold the exact amount of space I need for all my worries, mundanes, and victories. I enjoy (ok love and cling to) the stories about her world too.

At 9:30, I had a phone meeting with a woman who knows a lot about my genetic neuromuscular wasting disease. She put a couple pieces of the puzzle for me together, but she validated the 20+ years of terrible medical neglect I’ve dealt with. Validating it doesn’t fix it, but just for someone to feel sorry that you have been searching for neurological answers to be told you’re crazy was refreshing. (None of my medical professionals are calling me crazy now, it’s just been mysterious).

So my day continued with lots of physical pain knowing I had so much to do. One of the things the lady said to me about muscle wasting diseases is that to keep moving, you have to keep moving.

My head feels like an atomic bomb went off inside, but when she told me stories of people getting really sick or having surgeries where they couldn’t move for periods of time and ended up losing their movement, I knew today I had to push myself to stretch.

So it might have been 5 minutes of 2 stretches or even maybe just 3 minutes, but I keep getting called tenacious. Tenacious people turn their atomic bomb head upside down to stretch even though it felt terrible, but my legs remembered. My legs were happy.

A handful more messages came in to tell me how people loved me in different ways. It wasn’t “you’re so strong” or the stuff that often makes me feel misunderstood in what I’m dealing with. They were sincere messages of how I affect them or what they feel my purpose is.

I know my life of chronic illness is misunderstood as it’s an impossible thing to explain to anyone who isn’t living it. I’ve grieved a lot of people falling by the wayside as it doesn’t make sense to them, and we live in a society, the US at least, where dropping by is basically considered rude. People are also just busy. I know it’s confusing to understand how to help someone who never gets well.

Today I appreciated that I didn’t have to work to tell everyone how much I loved them on my favorite holiday. I appreciated that tiny snippets of love in various forms came my direction.

Despite spending the day alone and ending it with my head on an ice pack, I showed great love for myself by attempting to move again and allowing others to fill me up instead of trying to do the opposite.

Thanks friends. And if your Valentine’s Day was spent alone, I can’t say I’m sorry as life is a big old bundle of challenges, sometimes all at once. I do hope you get shown some love, even if it’s a smile from a random stranger.

Lots of love on a day that, for me is about love for everyone even when you wake up angry, bitter, and falling over, yet still,

Love

Lizzie

(The top picture is a valentine a friend made me and sent a picture)

The Well is Dry

I slept actually pretty well last night. After nearly two months of the onset of meningitis, the full blown attack, and subsequent 3 days of infusions of steroids, I haven’t been doing much sleeping. Last night, I slept nearly 7 hours straight.

It’s been a hard couple months of realities I’ve come to learn that don’t have a lot to do with things I can change, but it’s been leading to bigger fears I never thought I would have to face. I believe I have medical induced PTSD.

I really thought having a difficult time finding community was all about me. I have definitely become excellent at blaming myself for everything even though I feel like a good person who is interesting and has things to offer.

When the overwhelm of chronic illness became too much towards the end of October, I started seeing a counselor who didn’t give me motivational speeches about how “I would heal” or “how strong I was to overcome anything”. Last week as I cried about how awful meningitis has been on me and how the new community I was beginning to connect with seemed to run again, she explained, “Lizzie, your illnesses scare the hell out of people”. When I lamented that I do have good qualities and feel like I have gifts to share, she 100% agreed. She also said she knew people genuinely cared about me, but they just couldn’t manage seeing my reality.

I understand why it’s hard for people to step outside their comfort zone to help someone who seemingly never gets well despite always trying to greet people with a smile as I’mso happy to see anyone. At 43, I’m also facing the reality of figuring out long term care, something usually reserved for retirement age, which I was trying not to future think about. My counselor said this isn’t so much about future thinking, this is my reality.

The tough reality also hit that I have a very rare disease that when it hits hard in adulthood, as it has me, it mimics the progression of ALS or Lou Gehrig’s disease. I have CMT4J. People have had a hard time believing I have been as sick as I am as people understand autoimmune diseases a lot more now, people definitely understand cancer, but when I explain that I have an extremely rare variant of a neurodegenerative muscle wasting disease with an unknown progression, I may as well be speaking the most foreign of foreign languages. I have been misdiagnosed so many times, it’s hard to take me seriously. It was hard to take myself seriously honestly. I can’t really explain what I have. I’m grateful I will be speaking with about the best expert possible Friday morning. I really don’t explain it to people. It’s too hard.

They are searching for a cure. I’m hoping to help in some way to assist in fundraising for that cure. Maybe the cure will come in time for me too.

I’m working hard to appreciate the moments I can write a blog and communicate. I am also grieving a body that is so rare and complex that it’s misunderstood. It’s hit though. I have a big medical problem.

I’m interviewing someone to walk my dogs this afternoon despite someone else promising to do it. I’m realizing that if I’m going to get some practical help, I’m going to have to pay for it. The lady seems promising. A retired jewelry maker from what I can tell. Maybe she will appreciate my weird talents, my life kind of stuck at home… Even if she just comes to pick up the dogs, it will be a simple hello.

There’s a neurology resident who specializes in my disease. How does one fly across the country if you don’t even have the energy to drive a few blocks up the street to get groceries? I can only hope the energy will come or someone will step up to come along.

I’m learning my symptoms can be transient. I’m grateful for an answer. I’m sad and definitely understanding of people who have suffered for many years of misdiagnosis to understand you have something that eating healthy won’t make it go away, or yoga, or meditation, or a ton of hope. I’ll continue to take care of myself, but it’s overwhelming.

I guess I go back to that place of acceptance that in 7 days, I had a lumbar puncture and 5 infusions and there is one person on the planet that checks to make sure I go to and fro safely each day despite being on the other side of the country. I’ve got one. Some people have none. I’ll count that as a blessing even in a mountain of uncertainty. Even with a disease I don’t understand and few do and even few care to.

I get it. It’s an atypical life of a middle aged pets. Being home isn’t fun. Worrying about my future is daunting. Having no clue if I’ll achieve much of anything feels sad. I keep going as that’s what I do, but I’m definitely tired. I look forward to truly connecting with the CMT4J community Friday. We might be scattered and vary in age all over the place, but I will be happy to not feel quite so alone in it!

And I will say the new grocery delivery service I subscribed to has been beyond wonderful (even though I can’t afford it :(. I put a note to just leave my groceries on the porch as I wasn’t feeling well. She went out of her way to pick up a little card to write me a note wishing me a speedy recovery. Tiny acts of kindness are exactly what we all need to keep us all going. Remember those moments.

Love

Lizzie

Acceptance

I’ve been working on writing a book for two years. It’s taken many forms, but I finally settled on the first one I want to complete to be about the past couple years of being really sick and the lessons I’ve learned from it.

Despite a ton of adversity thrown my direction, I’ve just kept going. A friend likened my final chapter of my book to a “hero’s quest” and something along the lines of people don’t always set out to be heros, but sometimes they become one due to circumstances. It has had me crying all day.

I got meningitis maybe from my stem cell injections. While it’s not a cause, it’s a correlation. I have a very rare inflammatory condition. Stem cells cause an inflammatory reaction in your body. The two combined probably were like an atomic bomb. My condition is rare. Like I’m only one of 30 recognized in the world, so I absolutely say stem cell science is the way to go. If you get the opportunity to try it, I absolutely recommend trying it with the direction of a trusted medical professional.

Meningitis swells the lining of your brain and spinal cord. It’s the worst pain I have ever felt in my entire life that even my best breathing, meditation, yoga, and even pharmaceuticals made worse. I’m still in extreme pain. The worst part was I felt like I lost my mind. You could have thrown any severe psychiatric diagnosis at me every 5 minutes and probably would have fit the criteria for that few minutes.

I knew it wasn’t me, but when I couldn’t figure out simple tasks and found myself crumpling on my kitchen floor in exhaustion from trying to make food and do dishes and crying myself to sleep on the kitchen floor as 25 feet to my bed felt too far.

I knew I had really lost it when I was angry at people who didn’t deserve it (some did!), but I apologized as I could as I wasn’t myself and worked hard to explain why. I think the important people did. I lost hope. That isn’t me.

So I’m sitting getting a steroid drip into my arm for 3 days. I don’t feel confused. My hope came back. It’s also going to kill the stem cells, or some of them, my miracle cure.

With this comes a ton of acceptance that I will never be well. I will work towards wellness and continue to take excellent care of myself. I will look for the best supportive therapies to help me feel my best for my incurable diseases. I will ask for more help. I will enjoy people as they come. If they don’t, I have to accept that too.

Acceptance of the fact that life isn’t always about winning the lottery. It’s the miracle of understanding that life throws us what feels impossible and unfair, but I suppose the miracle is that we accept it and move onto whatever happens or doesn’t next.

Love

Lizzie

And the book isn’t done done. It’s kind of a disorganized mess of many random chapters that feel ready to be focused and put together FINALLY as I was waiting for my Disney ending to happen where I’m skipping perfectly healthy into the sunset. That’s not happening. I may enjoy the sunset, but I will probably only skip in my mind and not in physical health. I accept that with lots of sadness and plenty of relief to know I can stop chasing the impossible.

A Spiritual Journey That Really Began in Thailand

Meningitis and the lack of care I’m getting for it, the relentless physical pain, and emotional upheaval has left me lost and barely able to cope. I have made an incredibly loving friend that I always correspond with several times a day each and everyday. We have never met, but I feel like I know more about her and her family than I do any other person in my life.

Over these past several weeks of getting so sick from my stem cell injections, which I now know is having an extreme inflammatory response that inflamed the lining of my brain and spinal cord, she has sent encouraging messages, not a “you’ll get through this”, but more of an “Im so sorry. I hurt for you. I wish things could be easier”.

Today, she sent me a quote from a Japanese book about getting through life by kind of being interrupted by the mundane. It has much bigger philosophical implications, but she was saying she wanted to explain something to me that she had been thinking about how her brain worked, but didn’t want to inundate me with other stuff. I told her a distraction would be welcome. I told her I wanted a real distraction, not a fake distraction like Facebook, and if you know me, I haven’t watched tv in years. Sometimes our messages back and forth get deep and meaningful. Sometimes it’s kind of like this is what happened today.

So in her referencing the Japanese book, it made me think about my trip I took to Thailand in September-October 2018. I haven’t talked much about this trip as I don’t want people to get the idea that Im this millionaire globetrotting healthy person who hasn’t been authentic about my struggles. This trip was born out of tragedy.

When I was thrown out of my trauma resort, I was given a partial refund that I used to restart my life. I had to take care of my son for a few months, while one of his other parents was being investigated for child abuse, part of which we were technically homeless. As I didn’t want my child to truly feel homeless, I spent a lot of that money on us staying in a nice one bedroom hotel as it would have left me heartbroken for my child to have really known homelessness. I needed that money to live on for a long time, but moms sacrifice for their children.

The unfortunate part of life is that there is injustice. At the time I went to Thailand, I had a moment of feeling better, my child was being used a pawn against me, I had $990 left in my savings account that I would have just spent on more useless medical treatments, so I saw it was $775 to go to Bangkok for 2 weeks in a 4 star hotel with a rooftop pool and round trip airfare. It was on my bucket list. I hit reserve and 2 days later, I was off a couple days later. It seemed like a sign.

The rest of this post will be a lot of pictures with a few words. I went to Thailand to get out of being a victim and being a sick person. I remember tonight as an attempt to do the same, although this won’t be the same as I am absolutely miserable without a treatment date in sight.

I can’t even begin to tell you how happy I was to see this on the screen on the airplane seat in front of me. San Francisco to Tokyo is a LONG flight, plus I had over 6 more hours to Bangkok. Seeing as I had a near panic attack as the plane pushed back in the US (like what was I thinking going halfway around the world alone without researching it??) and thought about faking a heart attack to not have to go, as the plane descended and the little toddler Japanese boy I made silly faces at for the past 10 hours looked back at me one more time and smiled, I felt peaceful. Joy transcends language.

I can’t remember how this showed up on my phone during my layover in Tokyo, but it seemed extremely apropos for what I was doing. I had made a decision to live even in still being really sick. Antiviral medication had given me an energy boost from Epstein Barr virus.

A friend of mine’s cousin works in Bangkok during the week and always gets a massage weekly from this lady. After Ann, my friends cousin and I got through some cultural barriers that you don’t just get a 1 hour massage in Thailand, you get between 3-5 hours. The Thai people highly value relaxation as a way of life, not a luxury. Thai massage is not a Swedish massage. She would be standing on my back, digging an elbow into my glute, while lifting my leg in the air. It was the most painful thing I ever loved. I was nearly asleep by the end. She didn’t speak a word of English. I didn’t speak a word of Thai, but we were like besties at the end of 3 hours.

All over Bangkok, you will find shrines to Buddha and statues that exemplify the importance of yoga and meditation. It’s when I decided to strongly get back into my yoga practice. People don’t pay big bucks to go to classes there, they just have it going on in the park all day.

Another fun friend I met. “Pong” who kept trying to tell me jokes in English that made no sense. He had me laughing so hard. He’s driving really fast down side alleys with small children running around turning for a picture. He said to me, “you pay more, I drive faster?” I replied, “I pay less, you drive slower!” He thought that was hilarious.

I went to a Buddhist temple even though it was far from my hotel. I didn’t want to venture far. I was happy eating my $1 street food and being in a city of over 10 million people that was so quiet and the power of community was evident all over. Nothing like the United States. I was becoming the rather famous “white lady” traveling alone and many Thai people tried to befriend me, which made me nervous at first, but I finally read that in Thailand, they think it’s sad for people to be alone. So different from thinking in the US where we are all too busy for each other. I’m alone constantly as people are too busy. My Thai friends would be yelling at people for their lack of compassion!

I also had this overwhelming spiritual I don’t know what come over me. A woman was doing her chanting. It was so beautiful. I was grateful for Kleenex as I was moved so much. I didn’t become a Buddhist. I just really became open to the idea of spirituality.

After my Buddhist temple experience, I decided to check out the rooftop pool. I felt different. I felt peaceful. I had achieved what I came to Thailand to do. I wasn’t just a sick person. I wasn’t a victim to just be manipulated. I was strong. I just went to Southeast Asia all alone on a couple days notice and had a complete spiritual transformation in less than 2 weeks!

I was certainly sad to leave, especially with the uncertainty that I might never go back, but this little notebook and reusable shopping bag I bought are always insightful reminders of how to live life.

My friend didn’t mean for me to go down a happy memory lane. There was certainly heartache in that trip. I had sick days where I didn’t leave my hotel and wished I could have done more sightseeing, but I learned insights that being still in a culture totally different than the one I grew up in. Watching people interact was interesting, especially when you don’t know what they are saying. Thailand is plagued by many problems, but people still smile at each other. They smiled at me. I like to smile at others and enjoyed the reciprocation I received in a country that values community.

I’m sick with meningitis. It’s been a very frustrating several days of so many errors so I’m still not clearly scheduled for treatment. I’m usually people’s smiley, optimistic beacon of light that you can get through anything, and I’m honestly not sure how I’ll fare this one. Some people have disappeared. Some have surprisingly showed up.

I couldn’t get my fever down today. My normal calming skills of yoga and meditation make my head hurt worse, but my silly reusable grocery bag from Thailand reminds me, “even if you get lost, you will reach happiness if you trust yourself and go forward”.

I’m not sure happiness feels achievable to me right now, but I can remember such a profound phrase simply meant to carry necessities.

Love

Lizzie

What Happens When The Rock Needs Help

I was officially diagnosed with meningitis a few days ago, probably the chronic kind as I should have gotten over it in 7-10 days. I have a terrible immune system, which will prolong meningitis healing, but this has been six weeks. I really tried to open my eyes for the picture, but I just couldn’t take the light as I’ve been laying in a dark room for a few days as my eye mask feels hot when the chills and sweats come on.

I reached out to my primary care after a few days when about 36 hours after my stem cell injections I started to get very sick. I wasn’t ever angry, I was mostly disappointed with my whacked out body and why can’t my miracle cure be just that, a miracle? We thought it was an activation of my Epstein Barr, but this felt different and worse, but I’m not a medical professional and not a huge fan of Dr Google.

Six weeks later, I’m still miserable. While the fevers don’t get so high, the shivering isn’t constant, I was blessed with a couple glorious days last week, my confusion grows, I’m experiencing bizarre episodes of anxiety that I have never felt ever. The worst was today I just wanted to do some laundry and couldn’t figure out the washing machine again, so I just collapsed on the floor and cried. I’ve always had a strong mind to carry me through these times. I’m losing it, and it’s scary.

Have you ever seen those posts on social media that say something along the lines of “post this as your status so you know someone is always listening”. It’s intended for when your friends are having a hard time. So I reached out to people who are distance friends who post those types of things all the time. I’ll tell you I got a whole lot of no one listening. I got 1, that’s ONE actual phone call that they left a voicemail that was very encouraging. I got a couple likes and a couple replies where you know it’s that concern for the moment.

What I got a lot of was basically this, “you’re so strong. You’ve been through hard things before. You’ll get through this”.

In my experience of being people’s rock is that if someone is hurting, scared, upset, feeling pain, it’s not the time to tell them how amazing they are. It’s the time to say, “I’m sorry you are hurting. What can I do to help?”

Being ignored hurts a lot as it’s hard for me to reach out. I know I’m super intense right now as the lining of my brain is swollen leading to a whole host of emotional problems, not to mention the extreme agony of the physical pain meningitis brings. I understand people have obligations and their own family to worry about. Being ignored in my biggest time of need by people who I’ve held as they sobbed, listened to their health struggles, reached out when I knew they were struggling to simply be told I’m strong and get past it feels so reminiscent of “get over it” that my family liked to tell me whenever I had a hard time of any sort.

I recognize I’m not rational on any level and can’t discern caring from the fact that many people just don’t have the ability to sit with another’s pain, but I’ve worked to be very vulnerable that I’m scared about my future as if my brain can’t figure out my washing machine, what else is coming my way?

I’m also dealing with complete heartbroken feelings that I thought stem cell injections were going to be my miracle cure. I’m ok with being physically disabled. I’m not ok with being physically disabled and mentally confused over basic tasks and experiencing weird psychological symptoms I’ve never had from before getting meningitis. It might go away. I might get better, but I’m not hopping on the Hope train right now to jump off again into despair.

Sometimes I get mad at how naive I get that the incurable can be cured. I was given a gift of hope. I still can’t be angry it didn’t go as planned , but I’m definitely despondent and despairing. If you’ve ever experienced meningitis, I hate to say this, but it’s pure hell.

I scribbled some thoughts about what it feels like to have meningitis in handwriting I can hardly read, but here’s part of it:

I curl up with an ice pack to sleep like a small, frightened child would cling to a teddy bear on a scary night in hopes the pain will subside.

I go to eat breakfast at noon mostly because the dogs won’t stop crying as their bellies are hungry. I could care less about mine. I have no appetite. I see the pictures of my son and I smiling brightly together, my riding a bike through rural France, and other mementos that I once had a happy life that delicately hung on the refrigerator to remind me there’s always a possibility of a semblance to get that back.

Today I can’t take it. I rip them off, but gently to preserve the momentous as that life doesn’t feel like it will ever come back, not even a little. Not even a reminder, not even a possibility, not even a chance. It feels cruel to put myself through looking at it.

I feel like a shell of a person I once was. I don’t feel like I exist, certainly not to many people on the outside. A comment that angers me, “Lizzie, there’s a cloud of people who care about you”. You’re absolutely right. It’s a cloud. You can see a cloud, you can know it exists, but you can’t feel it, you can fly right through it without it affecting the cloud or you. Unless it’s an angry cloud, which might shake you up and then you just want it to go away.

I want to go outside. I want to sit under a tree, even on a cloudy day, at least I can see that reprehensible cloud of caring that supposedly exists.

I feel like a shell of a person. I don’t care if the sun shines. I don’t care if it rises or sets. I don’t care about much of anything. I do the basics of eating, peeing, the tiny amount of sleep this whacky body allows curled up with my ice pack wishing for this nightmare to end. Wishing that someway, somehow, someone would rescue me from this.

It won’t happen. I’m not that sort of person people truly care about to make time for. Clouds that are intangible care about me. Reminds me of “hopes and prayers” when that’s all that’s offered to traumatized children when they see dozens of their classmates gunned down at school.

Hopes and prayers. Water vapors droplets.

That is definitely edited for how long it is. It’s just an example of how much I’ve “lost it” due to this horrible disease of meningitis. There were many steps along the way where it could have been caught by medical professionals that I won’t go into as it will be too long. I definitely deserve anger for the medical neglect.

I have had some incredible opportunities thrown my direction, but I can’t get there like this. The end point of all the opportunities all have to do with giving back to other trauma survivors and people who live alone managing multiple rare chronic illnesses as I definitely know I’m not alone in that and still recognize I’m luckier than most in my aloneness. I don’t want anyone to feel as awful as I do these past few weeks and really, the past couple years.

I can still put words together with my meningitis, but I pay a high pain price, which is why I had a blue ice pack on my head in that first picture. I had another small one on my neck and a heating pad on my back. I cling to them as it’s the only thing that helps. My teddy bear.

Love

Lizzie