My First Video Blog!

I promised I would start doing it. Here’s the first!I’m in a lot of pain doing this, but I hope you will enjoy my first spur of the moment video blog completely unscripted as who I am.

I chose not to describe all the ick Im dealing with but to talk about the importance of having strong “umbrellas” in your life when weathering terrible storms. It’s definitely about gratitude in hard times.

Terrified I Can Admit It

I first have to say this isn’t my art. It’s just one of those things I found off the internet that struck me. Between my social media profile and my blog, I have had many people tell me that I am their blueprint for how to live.

I will first give myself 100% credit for taking really good care of myself. I absolutely put caring for my body as a number one priority. I eat super healthy, I engage in a daily yoga practice, whether it be in class or at home, I’m working to stay in love and not anger, I’m engaging in tons of self reflection on how to evolve to be a better person, but I’m also terrified.

I was diagnosed with meningitis a few weeks ago. I was supposed to follow up with my neurologist shortly. A call from his office this morning said his clinic is closing immediately. I’m still managing extreme headache, terrible forgetfulness, fatigue like I’ve never experienced, and if I overdo it, even slightly, I begin to slur my words very badly.

I asked if they could get me in somewhere else right away. I was met with a “no”. The pressure in my head is so bad, that I want to poke a hole in it to relieve the pressure. It is painful beyond anything I can explain. It’s unrelenting. It makes me cry as I just can’t believe how much it hurts. It’s awful. I put on a brave face so people don’t have to know as people leave when people don’t feel well and never get better, not everyone, but most. An average wait to see a neurologist locally is 8 months.

I’ve taken many pictures of myself in my illness and my victories over the past couple years as it’s mostly for my benefit. This picture was almost a year ago when I had horrible tremors for 11 days and my body would contort into weird positions even in my sleep. They couldn’t figure out why. They put me under anasthesia to do a complete MRI of my brain and spine and could only find that my spine had degenerated a lot more significantly and was beginning to have an S curve in my lumbar spine. It’s hard to show this picture, but this is my life as much as taking care of myself.

So I’m terrified as I was supposed to get follow up treatment for my meningitis. One of the things that has gotten me by is my very strong and stable mind. I seem to manage the physical stuff just because I have become so emotionally centered even with all that’s thrown at me. And of course they threw a psych evaluation at me for this neurological problem, which I was totally cleared.

I’m sleeping constantly and in those moments I’m awake, I feel my goals and dreams slipping away as my body just can’t. My mind is processing processing processing, but I don’t have the energy to sit up to do much. I’ve been getting to yoga class and doing my home practice a bit each day as I chose to come off opiate therapy to manage my back pain through my yoga practice.

My days are spent like this mostly in total fatigue hoping and dreaming for health even as I do as much as possible to facilitate it from my end. I dream of reuniting with my son, but I can’t think about it tons as the tears will flow so hard that my precious tiny bits of energy are completely gone and know the only way I have a fighting chance of seeing him is refilling my cup and charging my battery.

I couldn’t even really move in this picture. I was just trying to enjoy the bit of sun coming through the window and snuggly dogs on my feet. I have many diagnoses leading to lots of confusion to what causes what and my best ways to manage my diseases that have no cure.

The past two months have brought on what I can only explain as medical PTSD. I reached out to my medical providers, I went to the ER, I asked friends to stop in, I asked people to call… With it being the holidays, people were busy. It’s ok. They almost lost their friend, patient, loved one, mother. I’m figuring out many people really care about me, probably in the thousands, but the people who would take 15 minutes to go to the pharmacy for me is slim to none.

Community is a lost art. Sick people are scary. I can’t fault anyone. But I do sit in great fear with pretty serious neurological symptoms and no neurologist. Luckily, I saw my pain management specialist today who works with people who have neurological problems. I believe she should be elevated to sainthood. She was aghast at my care. She put in a stat order for me to get into a different neurologist, but the prescriptions to help are sitting at the pharmacy as I fell asleep at 5 pm as I’m just SO tired. Who has the energy to ask people when the answer is so often no as people are busy.

Community is a lost art. If you know a chronically ill person who is struggling, give them a phone call, pay them a brief visit. It could mean the difference between life and death. You might think of your friend. You might even pray for them. You might even admire their bravery, but I will tell you those things feel like nothing without a real connection.

Sorry for the rather sad post, but this is about authenticity. I’m not one to curl up and feel sorry for myself. I plan to get to yoga in the morning no matter how tired I am as it keeps me centered and grounded. I will continue forward in my fear and trepidation, but I believe it’s better to be real about it rather than just share my victories

An image of my poor, painful nights attempting to stretch away my painful leg spasticity.

Love

Lizzie

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.