The Revolving Door of the Psychiatric Hospital and What a Tough New Decade For Many

Yucky, cloudy, icy, ick I had to drive through to get to my treatment today. This was the easiest part!

I’m sharing this blog post about the “revolving door of the psychiatric hospital” as a true statement of my authenticity, and we will come full circle in how much progress this means for me.

I have been doing less and less Facebook lately as my energy reserves have been on “fix engine now” light. I haven’t had a ton of energy except to lay here and think for nearly a month since my Epstein-Barr virus exploded. Epstein Barr is what causes mono or glandular fever. 95% of the world’s population will test positive for it. Of those, a few will get mono in their teens or early 20s. It’s considered extremely rare to have it activate over and over. This past month I have physically felt worse than the first time I had mono. I’m not contagious, but the best way I can describe something so mysterious is that I feel like I have the worst flu ever and can hardly move. I think it has sent people running to the hills as you hear “flu” and no one wants to come around as much as I try to tell people it’s not contagious and really really have needed company. (I’m submitting an article to be published about what it’s like to be an extrovert, chronically ill, and physically alone. More in that later, and I have had people checking in, I think they are just afraid of what I have).

The assignment was given to me to think about how far I have come in life and to turn around all those negative ideas about myself as it’s lies as I’ve mostly been laying here and guess she thought it was a good use of my time as I have been shivering away the days. Being mostly alone when you love the company of people and using lots of distractions to not have to be alone to think made this a nearly unbearable exercise as I’ve had plenty of emotional upheaval lately that has bordered on soul shattering.

I have cried and sobbed a lot as I couldn’t understand why my new circle wouldn’t respond to me. Why people would ask what I needed and simply wanted some company, which is too much for most. I would go to others, but I haven’t been able to move and even with neurological improvement from my stem cells, I can’t do a flight of stairs. People I know live upstairs. People I know hole up and watch tv to cope with hard times or purposefully isolate. I want to chat. I want to read books, but I just laid here doing my assignment, sometimes happy with having positive thoughts fill my head instead of negative ones. Sometimes I was so angry at the person who gave me the assignment that I think really high fever was giving me deleterious thoughts about a lot of very kind and gentle people in my world. (Oops. High fever will make the gentlest of us angry and a bit whacko as I have had the “pleasure” of recognizing these past few weeks. I mean I killed a spider, and I never do that even, but I didn’t have the patience to get it out of the bath when I needed it to just go! So I can add spider murder to my crazy couple weeks!😉).

So I read from a plethora of different philosophies and spiritual teachings lately. So many ideologies say that this new decade was going to be full of growth and giving and regeneration and new community and exciting opportunities… I hope it’s happening for you as it sure hasn’t for me in many ways, nor anyone I know. I think it’s why no one is coming around. Everyone is in their own pit.

So back to the psych hospital reference. A dear distance friend said on their feed on Facebook they were going to the psych hospital again. This is many times since we were blessed to meet a couple years ago. Extreme trauma is the cause. Other dear friends have been in the psychiatric hospital or dealing with serious and deep depression and anxiety that makes me so sad as people don’t reach out. We feel we can only show our best selves to the world. I have been in that club, but I have learned a short visit or a quick actual phone call gives me enough connection to sustain this time of physical agony that will always affect your mental health. Those connection moments cheer me up hugely!

I want to tell my own story of the revolving psychiatric hospital door as I want mental health to be normalized, but more importantly seen that we need to make HUGE strides in how we treat the mentally ill, as guess what? We are human, and if you are in such a low place that you are in a psychiatric facility, you need kindness, not to be treated in humanely or like a shell of a person who isn’t struggling.

I believe anyone who has endured long lasting trauma, whether in childhood or adulthood has probably encountered the psychiatric system on some level if your support system is lacking. I did the revolving door of psychiatric stays for a long time.

Over the past couple years that I’ve been sick and had a LOT of time to think, I began to ask myself why? If you’ve been to a psychiatric hospital, you know this drill. If you haven’t, you might be horrified with how it generally works.

So you show up at a facility feeling so ashamed to even be there as you feel like if you just did this or that better or were a decent human, you wouldn’t be there. You usually show up and a cold receptionist asks what your problem is, if you go voluntarily. For me, I always felt suicidal. So you get sent to a barren waiting room where they take all your things so you don’t hurt yourself. So now you have nothing to comfort you, sitting on a hard chair, often with other people just as miserable as you, so the energy is terrible. After you say you are suicidal and have great insurance (I’m not sure if that was a curse or a blessing 🤔), you have to stay to get assessed. There is no saying never mind or “feeling better, bye!”

Many of these places are understaffed and overworked, so you might sit and wait for hours to days (especially in the ER), where like I said they take everything, including your phone. You might get offered some crackers or applesauce or some cranberry juice in a little plastic container if you’re lucky. You feel your absolute worst and basically you are ignored. The exact OPPOSITE of what a hurting person needs. I know I couldn’t have necessarily said what I needed in that time period in my life, but if someone would have just sat next to me for a few minutes, I might have felt less ashamed and embarrassed to be there.

In my assessments, they often seemed irritated with me and lacked compassion. So why would I go through all of this and do the revolving door? Because, if you actually get to a decent place where a couple people actually care, you start to feel important. (Psych techs are highly underpaid for what’s expected of them and there are some caring ones, but you can tell there are plenty who are just burnt out as the general psychiatric population IS difficult. I know I was plenty difficult for a long time.). For me, what I reflected on why I ended up there so many times is that I was never taught emotion regulation by my parents. Something small on an already bad day could tip the scale really easily. I didn’t want to die, I just wanted someone to listen and see how much emotional pain I was in. The other thing in psychiatric hospitals, is that someone comes around every 15 minutes to see if you are safe. What long term traumatized person ever had someone care about their safety?? You also get 3 meals a day offered each day, even if it’s crappy. I might have been abused by people with money, but what many don’t understand is that rich abused kids can be subjected to nutritional neglect too. The other thing is that it’s attention. It’s usually horrible attention for doing negative things, but you are actually seen by people for your hurting. The more you say you are hurting and do negative things, the more attention you get. I never won the prize for being the best at negative attention seeking, but I might have stood on the podium a few times. 🏅 And probably the best part about my revolving door psychiatric hospital days is that I could connect with other patients who hurt as much as I did and were just as misunderstood.

I had the good fortune of ending up in some really good places where I can look back at how much staff cared about me. I also ended up in some very horrible places where tears for real grief for so much loss were met with yells and screams to stop by staff as it was “inappropriate”. I also ended up only one time in a place where I feared highly for my personal safety.

I just talk about the reasons why I believe I did the revolving door psychiatric hospital thing for many years as I have been really really really sick for nearly two years, and it’s given me lots of time to think about how I lived my past. Instead of going crazy, which I often feel like I do when the grief comes up, I have a beautiful circle telling me it’s normal, and I’m normal.

If you were to ask how many psych admissions I’ve had since my teen years, I couldn’t tell you. I honestly don’t know? I do know that I was hurting and didn’t know how to get past the hurt, so I went to a place that in many ways replaced the things my family never gave me consistently, food, a sense that someone cared, attention, safety, and in a strange way that you can only understand if you have been there, community that was kind of equivalent to family.

Did I learn much at the time in those places? No. I definitely wasn’t ready to. I remember one place where a therapist would start a meditation, and I would immediately walk out, which is so funny as I have started leading individualized meditation for others based on specific needs and find myself in meditation constantly to manage my physical symptoms to get relief. I live in a pretty constant state of mindfulness. I know now that people saw potential in me, cared about me, even looked up to me. I have been told by many professionals I have run into over the past couple years that saw a very broken Lizzie a long time ago. They are really proud of me now!

I’m grateful to say that even with all this physical suffering I’ve been going through these past couple years, I have learned to tolerate the distressing emotions. I can regulate myself pretty efficiently. I notice gratitude more than what is wrong. I genuinely work to ask for help in appropriate ways. I enjoy attention for the positive and not the negative. I’m definitely a work in progress.

And so for the past near month where my physical misery has been beyond difficult and seriously have just thought about skipping out on life as it does pass through my mind when I get REALLY sick that it just feels so unfair to have overcome so much to be here, stuck mostly in my room feeling horrible wishing I could do something to help people and attain my own goals.

I know my brain has stayed relatively clear, well except for those high fevers, and I’m still sane, still fighting for a better me and my health. I still do yoga each day even if it is only 5-10 minutes of light stretching and even if all I have the energy to do is think, I’m good at it and been working on my assignment to look how far I’ve come and to tell the nasty thoughts that are lies that enter my head to “buzz off” (with slightly stronger language maybe 🙄).

I know a few mental health professionals subscribe to my blog. I assume you are the good ones, but maybe share this blog with the ones that just get frustrated with “us” as we are probably more frustrated with ourselves compared to how much you will be with us. We come at our most vulnerable saying with a bowed and shamed head, “help me?”

And if you have dealt with lots of very difficult patients. Some of us change a LOT. Some of us get the gift of getting so sick that we stop and examine everything about our existence and those tiny seeds of kindness you planted might not bloom immediately, but with enough support, sometimes we turn into the biggest and strongest and most beautiful trees you have ever seen simply because when I showed up at my most vulnerable in my lowest of lows, you just went slightly out of your way to make that hard chair I sat in for hours just a little more comfortable with a tiny smile or a warm, itchy hospital blanket.

I know if I ever enter a psychiatric hospital again, I will go with a head held high to offer hope, not to be admitted. But for those of you still caught in the revolving door, it’s ok. Go as many times as you need to save you. Saying you need help is an extremely brave act.

And the sun always shines brighter after the storm.

Love

Lizzie

Transparency and Authenticity Began with a Decision to Take Back My Life

This picture was taken just about exactly 2 years ago. I’m transparent in my “crazy” as the more we talk about it, the more we normalize it. I don’t believe I was ever “crazy” in a pathological way, I just believe I had a lot of trauma I had to finally make a decision to put behind me.

In October of 2017, I made a decision to go to an inpatient trauma unit for a month as my family was definitely making me crazy. They wouldn’t send me back to my family until they could find a residential treatment for trauma to send me to. So nearly a month into being there (its normally a 3 week program max), I flew to another state to go to what I call my “trauma resort” as I have very mixed feelings about that place and don’t want to attach my experience to the name.

Regardless, at both the inpatient and residential treatment centers, I had individual therapists who believed in me so much and truly got me to recognize my inner strength that was powerful. I will forever be grateful for those two ladies and how the trajectory of my life truly changed.

I got thrown out of my trauma resort. I actually got sent to a very high level psychiatric facility. When I got there, I very calmly asked what the reason was. The very rude and awful intake lady said, “I can’t tell what the psychiatrist wrote. The handwriting is too messy”.

As soon as I met with the psychiatrist, she basically questioned also why I was there and asked what arrangements I needed to do to get “home” being my family’s house. I was crestfallen. This wasn’t a place I was ever going back to. I couldn’t take it. I had been dealing with horrendous illnesses that I got no help for. Returning to my biology just meant I would stay sick without help and with plenty of severe emotional abuse.

As I sat in the airport waiting to go back to my family with a plan to end it all as I couldn’t see a way out, a call came through on my phone. It was for a dream job I had applied for 2 years ago, but there had been a hiring freeze. They asked if I would do a phone interview in a couple days and relocate back to Nevada. My desperation turned to hope.

The next call I got was a tiny voice saying, “mommy, things are bad. I want to kill myself”. In that moment it became clear why I got thrown out. I had a job, which I did get, but couldn’t take as I was too sick and now had a 10 year old little boy to take care of full time to attempt to heal his wounds.

Somehow, my body gave me enough of a break to pack what I could in my little car, drove out of Texas and back to Nevada. I took 14 days to make the drive as I took some detours to see people and decided I had to see the Pacific Ocean.

As it was as far away from Texas as you could drive. I remember when I hit the pacific, I sat on my car and just sobbed as I was finally going to live life how I wanted to. This is the only picture I took of that moment. I would have been way too afraid to ever drive across country alone. A lot of the tears were in recognizing what I could do.

It has been a nearly impossible 2 years full of illness, unfairness, anger, my shortcomings being put in public display (which I have no problem talking about), while others with big problems put on an air of perfection that I have just had to work hard at leaving the negativity behind, otherwise it will eat me alive.

It has also been 2 years of truly getting to know myself. It has been a time to treat myself really well and in believing in myself and standing up for what is right, I might have ended up with a few arrows in my back, but I continue to connect with people who gently pull them out, rub my back, and are incredulous that I’m still standing–and yes, I’m standing just a bit more day by day thanks to my stem cell therapy! It’s been a time where people have begun to look up to me instead of my just looking down on myself.

The beginning of 2020 has been incredibly hard. My Epstein-Barr virus has done nothing short of kicked my ass, and I’m usually a lot more eloquent than that, but growing pains hurt–a lot, especially when you are forced to stay in bed for who knows how long when your goals are a lot bigger than that.

If you feel the pain of growth and it is completely unbearable, trust me, I understand. I buy Kleenex in bulk as the only way to get past it is to go through it.

Trauma doesn’t make us crazy. It makes us stronger. Even if you spent the holidays alone or fell on your hardwood floor New Year’s Eve with a bang (a very ouchy bang), and not from partying, but from being extremely sick with a virus that few understand, it didn’t turn out how I wanted, but I look at that picture of my first genuine smile from nearly 2 years ago as I was hugging a friend’s dog and realize I’ve come really far. It certainly didn’t happen how I thought it would, but I’m here to tell a crazy story of survival against every odd imaginable.

And I decided I do have a new year’s resolution after all. It’s simply to take a shower. I’ve been so sick that I haven’t taken one since December 29th, 2019. Let’s hope I can stick to that one! I’ll keep you posted as I’m sure you can’t wait to know when it happens 😉.

Love

Lizzie

It’s New Years Eve. Time to Make Resolutions—or maybe not

(Ringing in the new year with an activation of Epstein-Barr virus. Ice pack on my face for the fever and a heating pad on my back to ease the aches, but I also am beyond disbelief that I can feel my right hand to type this!)

One thing I did fairly well this holiday season was to not have any expectations. Holidays often bring thoughts of fairytale holiday time with loving family and a true celebration of the New Year. Having no expectations brought some tiny surprises.

The most popular resolutions are to exercise, eat healthier, or quit a bad habit like smoking. I can check off all that as those are constants in my life.

So what is this wonderful resolution I should make next year? My resolution is just to be me.

I definitely want to be less hard on myself and rest to where my body is at 80% instead of rushing out when I’ve hit 15%. Of course I want wellness and have huge goals, but I also know huge goals are very unrealistic to accomplish right now.

My stem cells have given me great neurological gains and hopeful the inflammation in my body is subsiding.

The neurological gains are obvious and definitely not a placebo, but what I wasn’t prepared for was how it would make my Epstein-Barr virus explode with symptoms. So as I believe in having a variety of feelings about the same situation, I am grateful for the procedure, but I’m also scared as this is the worst my Epstein Barr virus has ever been symptom wise.

It’s been two weeks and while I had a couple days here and there of some respite of symptoms from the virus, I’m back in bed again feeling very flu like and unless you understand the debilitating nature of fatigue you can get from a virus that never goes away, autoimmune fatigue, or have ME/CFS, you have no understanding of what this fatigue feels like.

It’s not like tired from working all day, then going to the gym, then socializing and all you want to is fall in bed. After a day or two of good rest, you are back at it. My fatigue is never ending. I often push through as laying still in my house gets really boring.

Regardless, just writing this much is making me exhausted. So I’m going into the new year, sleeping first of course, work on not being so hard on myself, and can always hope for better health, although I have stepped out of hope for that as there’s no proven way to eradicate this virus that is at the root of my problems. I can do things to help it. I just can’t make it go away.

So not really resolutions for me except to keep doing what I’m doing and hope to do it even better, especially the being really hard on myself. Those are old thought patterns from people who were trying to subvert me.

So, I’ll cuddle my dogs, continue to rest, and go about the business of being home mostly with some outings.

Definitely not how I thought my life would turn out, but it’s what I got dealt. Many people with chronic illnesses might be feeling a bit troubled by the new year. Most people who make huge resolutions don’t stay with them. If they do? Great and hope to hear about it.

I’m managing a fever and going between burning hot to freezing. I’m ringing in the new year the same as many days. Not feeling too good, but I also remember I have a safe home, a tiny circle of new friends that I might not see much of at times, but I know I probably cross their minds.

If you have a resolution that you truly believe you will stick to, tell us about it.

I’ll continue to emanate love to those I can as well as maintain firm boundaries with people who drain my energy battery.

And I will definitely keep at my excellent self care habits that have kept me going this year.

So happy new year, or if it’s not totally happy, that’s ok too. If you are doing something amazing for the new year, please share share share. If not here, with people you love so they can support you in making them come true

As I once posted “it’s ok to not be ok”. I’m definitely ok mentally. I’m just disappointed in my physical body as I have tirelessly worked to do everything possible to support my journey to wellness. No journey is simple, but if we stay authentic about how it affects us and remain in a loving place, it will be ok.

Love

Lizzie

On Connecting the Medical Dots, Gaining Many Followers And Stem Cell Therapy

https://m.youtube.com/watch?v=ui0jzBy4IWo&feature=youtu.be

The video explains a little about CMT4J. It’s very short. I encourage you to watch it before you read this post. It will make more sense. I am absolutely NOT asking for fundraising. This is just for education.

So I was officially diagnosed with CMT4J last summer, although we had talked about it the summer of 2018 when a significant pathology came up on my genetic test. My neurologist wanted to watch my progress.

I’ve been very public about my stem cell progress via Facebook due to knowing many people via the internet who have mysterious inflammatory diseases, but the neurological community has been sending me questions in droves.

I am happy to answer as my neurological progress has been astounding despite my Epstein-Barr virus being sent into an explosion that has left me shivering and flu like most of the day for 10 days now. I at least enjoy questions coming from around the world as it distracts a body that is making fascinating changes, but is also extremely hard to manage living in.

So as far as connecting my medical dots, I clearly have many problems with my body with many diseases with names. Something that has troubled me is a lifetime of neurological problems.

I didn’t walk until after 2. I did walk on my knees strangely and as you will see I am proudly holding up my baby shoes (well looking up the size, they would be for an average 3 year old) that I now proudly show the scuffed toes and there is no wear on the bottoms. My mother used it as an excuse to call me “willful” and my difficulty made me “evil” even as a baby as I wouldn’t just get up and walk like a normal kid. I insisted on walking on my knees she said. It used to make me sad that I was so lazy that I wouldn’t even get up and walk.

Now I know a hallmark of CMT is walking late and being creative to find ways to get around. Apparently, I could practically run on my knees. I guess I could stand, but my method of locomotion was on my knees!

I could never run. I was the proverbial last pick for sports in gym class as I wasn’t fast. We had to run a mile every Friday of middle school. I would start running for about 30 seconds and then just couldn’t. I would have to walk my mile. I still remember the PE teachers name. She would chastise me for going over the bell time making me late to my next class as I had to shower too. I didn’t know what was happening. I just knew if I ran, my legs hurt really bad.

In my 20s, I developed weakness. One neurologist took a brain MRI that was clear and said I didn’t have MS and my trouble breathing was anxiety, so go talk to a psychiatrist. Not being able to run and issues breathing are very particular to CMT4J.

The next neurologist I went to a year later as things seemed to progress, not get better said, “it’s like you have the symptoms of ALS”. I had nothing diagnostic to prove it though, so my weak, often numb limbs stumbled out of the office with another psychiatry referral. If you watch the short video of CMT4J being similar to ALS.

A small segment of the CMT4J community found me! I understand so much more. Hard to understand a disease that only 31 people in the world have been identified as having!

I wasn’t depressed. I was looking forward to a good future no matter how horrible my past. I was working hard on my trauma with a dedicated therapist and generally doing the best I could to hide how clumsy I was and luckily fell over a lot just in private as I didn’t want anyone to know how “crazy” I had become as that’s all doctors would say.

I believe my primary care at the time sent me to a cardiologist as I told her I was falling over a lot. I got subjected to the treadmill test. Within 30 seconds of them having me running, I was begging them to stop the treadmill. They were stern my vitals were fine. I had a mask over my face, but I just remember trying to get out, “please, it’s my legs, they are going to give out, just please, I’m going to fall”. I finally ended up yelling stop, so they hit the emergency stop switch and collapse I did.

I took the cardiologists perplexity at looking at this young 20 something woman who could hike 10 miles in a day, was very athletic and fit, crumpled on the floor not understanding why my legs wouldn’t work, as disdain and anger at me. I felt like I had failed the test and couldn’t take being called crazy again. He probably made a follow up appointment, but I was so used to medical neglect, I gave up.

At the same time I had a festering virus called Epstein-Barr rearing it’s ugly head since 17 that I know of. 95% of the world’s population will test positive for it. A few people might get mono as we call it in the US or glandular fever in other countries. It is considered extremely rare when it continues to activate over and over. The biggest symptom of another activation is debilitating fatigue.

Towards the end of my 14 year relationship my partner would constantly get angry at me for sleeping all the time. I got called depressed. No matter how many times I said I felt ok emotionally, I just couldn’t seem to stay awake and didn’t know why. It was a huge source of contention. I couldn’t explain it and just kept trying psych mec after psych med that never cured my “depression”. I know what depression sleep is. It’s often anxiety ridden and about isolation and avoiding life. In the moments I was awake, I was excited about the upcoming adoption of our son and was making goals and dreams and doing lots of writing and reading as I could.

After it was clear I wasn’t going to get up (I really wished I could, trust me), I was asked to leave and seeing as we weren’t married, there were no vows of “in sickness or health”. I didn’t even think to try to go to a doctor to figure it out. The internet was still in its infancy and Dr Google didn’t really exist. My partner just assumed I was depressed, which was fueling my “laziness”.

Despite the fact that I needed that relationship to end, especially as I see so many wonderful relationships where a partner doesn’t feel well, so the other steps in to help or be a medical advocate, I got a lof complaints about the house not being clean enough or dinner not being quite as fancy and not putting enough time into the baby. Perhaps someday that ex will understand my circumstances and realize I was trying my hardest in a body that didn’t make sense to me. If not, that’s ok too. I know my truth now, and I knew it on some level then.

So as I make so many neurological gains (I used to say I walked like a drunk unassisted. Now I say I walk like a baby duck), for me it’s an exciting time of firsts I never thought would happen. I may always have to use my wheelchair in public, but it sure is wonderful to walk around my house in a manner that doesn’t aggravate my arthritic back so much. And it’s really great to feel my hands again.

So I hold my scuffed baby shoes up with pride at knowing I wasn’t being a “willful” toddler or being lazy in depression as an adult as I hold these shoes, I might be going into a shivering episode, but I hold them with pride and hope that many of my nasty diseases will be eradicated and will go on to achieve some of my life’s goals as being sleeping beauty has not been one of them. I don’t need anyone to rescue me. I’m doing that just fine on my own with plenty who walk beside me.

In the meantime, I’m hopeful I can be a source of light for the sick and hoping, wishing, and praying that my magical stem cells will either significantly help or eradicate my CMT4J. I found out I’m the 31st person in the world to be identified with this variant and even though the video shows a valiant effort is being made to fundraise to get a clinical trial, I would personally love for people to spend relatively very little to just be injected with some umbilical cord tissue.

As for Christmas, it kind of sucked. My family doesn’t believe I’m sick. I just got a lecture that I hadn’t called in 8 days and “must be nice to be having fun with my friends while I forget I even have family”. I reminded him I sent a couple texts and hadn’t called anyone as I was very sick with a reminder that I just had a pretty major medical procedure on the cutting edge of medical science. No questions asked about that part, just guilt guilt guilt. I could hear my sister in the background who absolutely doesn’t believe I have any illnesses and basically told me to “get over it. Stop doing this for attention, and get a job and act like an adult”. So my loving heart wanted to say “merry Christmas”. My new heart surrounded by boundaries decided I couldn’t take this craziness and got off the phone with a little more guilt thrown at me.

Oh well? Some people get incredible families. Some people get so so families. Some of us get families that 1500 miles of distance often doesn’t feel like enough.

I’m honestly grateful to finally be medically validated and as the year closes, I am reflecting on a lifetime of people who have believed in me. They aren’t family. I may never see many of them again, but I can hold in my heart the gifts they gave me to maintain my peace, contentment, and even some appropriate sadness over a lot of time lost.

Love

Lizzie

Christmas Eve Has to Be PERFECT. Oh Wait, Mine was in a Totally Unexpected Way

Let’s face it, the holidays can be a rough time for the best of us. There’s lots of rushing and buying and the need for perfection has reached the high of the year.

On December 17th, 2019, I received a huge gift of stem cell therapy. Perhaps it’s not the most scientifically backed procedure and nearly a week of violent shivering had me thinking I had made a terrible decision despite implicitly trusting the medical professional who did it. I’ve made a lot of bad medical decisions over the past nearly 4 years simply due to the fact, I make them alone. I have also made huge neurological gains that I forgot in my shivering self.

I have found an incredible support system, but they don’t know my health history enough to make decisions with me. A little over a year ago, I had my thoracic spine fused that causes me more pain than prior to surgery. It was going to “cure” my ability to walk normal. An amazing miracle! (If you see my profile picture, I’m now in a wheelchair most of the time) I realize nothing can be done about my spine. I’ve lived with back pain since childhood, so it’s one of those things.

So that brings me to today. I have been shivering and sweating and chilled then burning hot for nearly a week. I had one good day. The rest were spent in bed so weak from fatigue and having zero appetite that I was honestly scared. It’s not like you can just pluck the stem cells out. I called my primary care a bit panicked yesterday as I was shivering so much, I shivered myself out of bed and gave myself a good bruise. I didn’t get a call back making me feel stupid for calling as those old trauma messages come back in your head. For all I know, she got busy, didn’t get the message, or maybe they all sat around having a good laugh at my panic (ok, I highly doubt the last one).

Regardless, today was Christmas Eve day and was able to make myself some nutrient dense food.

I even made a “Christmas casserole” that I just changed many ingredients to be anti inflammatory and added way more vegetables.

I knew my Christmas Eve plans were already a no go. My yoga teacher held a special Christmas Eve morning class today that I couldn’t get to as I needed to rest. A 75 minute iyengar yoga class is REALLY hard work.

So I was happy to stay home. I made myself a detox bath, got in, and began to read a new Barbara Kingsolver book on my kindle. She’s been a favorite fiction author of mine since college. I was happily detoxing and reading when a text comes through, “Lizzie, I ordered you dinner and tried to make it simple so you can eat it”. This woman and I have a very special connection that I can discuss another time with her permission, but the part that was so thoughtful was that she knew I had been having a rough time this week healthwise and lives 9 hours away and ordered for me anyway.

After my dinner arrived, a newer friend stopped by after church who also knew I had a hard week. She is a lovely person and does an amazing job at being a single mom. So the three came in my house. I was joyous to see them, especially as I truly believed my Christmas Eve was going to be me, in my bath, with my book. I was ok with it. I didn’t do anything wrong. I just didn’t feel well.

Her son saw my yoga stuff I always have put in my part of the living room. He said he always wanted to try yoga and kept saying he wanted to do it. I figured I needed a good stretch and yoga with kids is just fun. I used to take my son to a family yoga class that he would complain about, until after when he would talk about how “zen” he felt.

So I did yoga with these kiddos tonight and gave their wonderful, but overly critical single mom (of herself as she is really great) a break to just be (or so I hope).

She reminds me a lot of me when I was a working single mom. I was overly critical of myself as a mother, I constantly apologized for my smaller child’s behavior to others as he was free spirited. Her children are a little that way too and love it.

So of course I’m terribly missing my own son this holiday season who was unjustly ripped from me (or maybe it was just, but I just got completely blocked instead of communicating like I asked).

Regardless as these two little children were hugging me tight as they arrived and left at the same time, I put all doubts of my mothering aside. Instead of analyzing what I did wrong, gave myself huge accolades for what I did right.

In a time of screens and phones and video games , which are very important to kids now, I’m grateful I limited it and taught my son the little things like using yoga to manage your anxiety, including him in my gratitude practice, getting him outside as much as I could, showing him feelings were ok, and was just beginning to teach him the basic concepts of what spirituality is. No worries moms, he got plenty of screen time too. I’m not perfect!

He might have been ripped from me. There might be stories going around how I abandoned him as I was too sick. I know for awhile, the story was I was too “crazy”. I’m pretty transparent about my “crazy”, so some might be fooled, but when people tell me I’m the sanest person they have ever met, I feel good. These are people who know I have real feelings, fears, sadness, anger, as well as constantly working to embrace what’s good and work to operate from gratitude.

Tonight, being with those two sweet little children and looking at a mom who was once me, I’m grateful to be in their lives. I’m grateful they are in mine. I’m grateful that so many would check on me on a holiday that is about family and include me in theirs when I don’t really have one.

I will see my son again someday. I see it constantly in my yoga meditations and often I wake up in the middle of the night with a vision, not a dream of us reuniting. I don’t know how or when.

Tonight was a very merry Christmas Eve for me. I might not be with my sweet angel of a son but, I got to spend time with children showing them what I love with plenty of giggles for the kids and I as well as mom too.

Nice to be reminded that you don’t have to be perfect to be phenomenal.

Happy holidays. If it isn’t happy, I’ve been there too. Only a week away and everyone can join a gym, go on a diet, and quit smoking, for a week at least for their New Years resolution. I’ll blog on that BS as it grows closer.

Look for those tiny moments you can hold onto. So during the next week when my trauma brain takes over and I think no one cares about me, I’ll remember the big squeeze of these two little ones when I was just going to take a bath and read my book this Christmas Eve.

Love

Lizzie

Stem Cell Therapy Update

My body has been changing in rapid ways since receiving my mesenchymal stem cell injections derived from donated umbilical cord tissue. I thought I would blog a lot about it. I clearly haven’t!

I have been posting daily updates to my Facebook as things change daily in such strange ways. My Facebook has many people very interested in the stem cell process to heal their own chronic diseases, and it’s quick, which is what I have time and energy for!

It’s been an exciting and frightening process as I haven’t been able to find anyone who has gone through the exact type of stem cell therapy I have for similar disease processes.

I’ll give you a quick rundown of my physical improvements and then talk about this process from more of a childhood trauma survivor.

I’ve had lots of small neurological improvements with not having my hands go numb anymore. I have temperature sensation in my back again. My right foot that has been totally numb for longer than I can remember seems to be “waking up”. Not so much in a painful neuropathy type way. It’s more like I can feel a circulation inside of it of some sort I don’t have the proper words for yet. I also have been very flu like. I shiver a lot, especially at night and alternate between freezing and burning hot with plenty of achiness. I shivered myself right out of bed and fell on the floor. Ouch! My primary care who did this believes it could be a good sign that my body has actually been given the boost it needed to fight the Epstein Barr virus that has a very rare manifestation to decimate some people’s bodies. A really weird one was I got my period and icky cramps for about 3 days. I was put on very high dose hormones only reserved for the worst case scenario for gynecological problems in an attempt to avoid any surgical intervention. That was nearly 2 years ago. I had kind of completely forgotten about periods totally, as I haven’t had one in 22 months, which is pretty funny for any woman. Not sure what that was about as I haven’t heard back yet.

The best is probably that my doggies were happy to wake me up this morning. Dogs have been proven to be excellent at detecting diseases. They have been really subdued lately, ok for a long time. They are happy to see other people, but they usually just stare at me forlornly. I guess they sense some good change.

I will now talk stem cells from a trauma perspective. I freaked out about this process in bigger ways than I have freaked out about anything in a long time the couple days prior to it happening. The anxiety about failing my primary cares expectations for my healing became so huge, I think I forgot all my coping skills and went into “freeze” mode for about a day, which only breeds bad anxiety.

I then remembered to ask for help dealing with the anxiety. Help I got. Lots of love and hope from many and stimulated my memory to do the things that help me.

My second day after my injection, I felt more normal than I had in years. I went to yoga and 3 stores. I still used my wheelchair, but the fact that I could be out and active for 6 hours was miraculous until…

I got home. I again began to have anxiety. As a chronically ill or acutely I’ll person, all you dream of is getting well. It’s all I’ve dreamt of and the goals I would achieve if I ever had the chance. All of a sudden, I was stricken with panic. Being sick for years is NOT easy, but there is a certain amount of ease to it once you take away all the physical misery. It boils down to the fact that no one expects much from you. No one is calling me to make big commitments. When I have a good day, I can spend it how I want. I have to basically be responsible for myself and definitely work at cultivating the friendships I choose, but that’s about it. I mean I live alone, which makes things difficult, but I’m only responsible for myself and two pups.

So all of a sudden, I felt weighed down with the idea of my own expectations and those people would put on me. I nearly started panicking. Instead, I wrote down everything that was causing me anxiety. I was calm again after doing a couple rounds of yoga breathing.

My biggest revelation is that I’m not the same person I was before. If I am given the miracle of health to begin making my goals happen, I’m going into it as a much more insightful and emotionally whole person. I will also be going into it with physical health, which is something I haven’t ever consistently experienced. I believe as well as many of medical professionals that my “depression” was a lot more than just that. Of course trauma causes issues like depression that I certainly needed to work through, but despite being diagnosed with some significant health issues in my late teens, it was always with a bit of a dismissive hand, or maybe it was my perception as being dismissed is my go to as how I had been treated for a long time. Thank you hard emotional work to get over that one!!

The other thing is that healing is a process. It’s not like I have to save the world this afternoon. That can happen next year 😉.

So after years of wishing I would just feel well, substantial gains are within reach in the next few months, which gives me plenty of time to focus on healing, continue to cultivate healthy and loving friendships, make a list of what I truly want to do, begin working on it as I can, and NEVER stop the gift of a self care plan that has been beyond wonderful for me physically, emotionally, and spiritually.

The best we can do is keep out of the future and stay in the here and now. And now, I want to take a nap as I’m exhausted, but a good friend is having an open house for her book release. It’s not everyday someone you know well publishes a book and no matter what, I’m getting there as a showered and clean me!

Stay out of the future. Remain in what is happening today. It’s the best anxiety cure and grateful to truly be embracing it.

Love

Lizzie

A Lifetime Lost: A New Lifetime Gained

I absolutely promised myself I wouldn’t blog about this at all tonight and revel in my gift I’ve been given. It’s just too miraculous not to share this light. The above picture I made the night before my stem cell therapy to manifest healing instead of all my worrying about failing. The circles in the body are similar to artist description you can find on google of my particular type of stem cells. The first quote is what my medical professional said last week when we were talking final plans for today.

If you have followed my blog, along with the trauma healing (the good part), the most devastating part has been watching my physical body falling apart and realizing all my hopes and dreams were being flushed down the toilet as my diagnoses and symptoms stacked up leaving me able to go out a couple times a week if I were lucky, but my life has been lived at home mostly for really the past couple years.

Last March, while in the hospital, a neurological MRI showed I had massive lymph nodes and lung nodes. The thought of the doctor who was sent to talk to me about it was lymphoma or sarcoidosis. As time went by, it was pointing more towards lymphoma, which I wasn’t surprised about as cancer is definitely a family disease.

I’ve been diagnosed with this and that, autoimmune, neuro immune, genetic, diseases of serious inflammation, arthritis (that was when I was a late teenager), had my spine fused with the promise that I would walk normally. That miraculous surgery clearly didn’t work.

My primary care, who we will just call, P has ridden this roller coaster right along with me. I’ve had a Lifetime of terrible medical issues that my mom called “dramatic” or “attention seeking”. I’ve kind of used that framework to manage my own health. Despite concrete evidence, I just felt like drama. P was just wanting a clear answer it wasn’t cancer.

When I was in my 20s, I fell in an aerobics class. The ER said it was sprained. The orthopedic doctor I was referred to didn’t look at it. When I went back several months later, he said the “pain is all in your head”. My primary care at the time finally believed it was bad and sent my foot for an immediate MRI over a year and a half later. I was instantly being scheduled for major orthopedic surgery as my calcaneous (the round bone in your heel) had shifted so much that I was implanted with 5 screws and a metal plate to make my right foot not move. I was screwed together as I now had a very bad case of arthritis in my foot for the pain being “all in my head”

It took many years to heal from and still bothers me as my foot and ankle don’t bend properly, not to mention it ruined nearly a year of my life as I was left helpless with a partner that seemed pretty irritated with my neediness. I was certainly irritated with my neediness. I just tell that little bit in a Lifetime of medical neglect.

So today, I was injected with mesenchymal stem cells derived from umbilical cord tissue from healthy births donated by healthy moms to help people just like me! There are certainly tons of research papers on its efficacy for autoimmune diseases, especially neurological ones as well as inflammation and arthritis. There are other uses, but this was to save me with hope to get life back.

This was my holding my bottle of stem cells that I had to warm from freezing in my palms for a long time. In doing so, I put all my own new found self love, the new and genuine love of others, and the love of a spirituality I am gaining into that tiny bottle to heal me. I was crying from so much gratitude as this process has been a huge gift in many ways.

Ugh, the needle was huge and hurt! My crazy face was more about how weird it was to feel my arm start pulsating really intensely. It was so intense that others in the room could see it. My weakest and most affected side is my right. I had a study showing I have very abnormal nerve conduction down the right side of my neck to my right hand. That was the biggest pulsating and reassured it was a good sign as it meant the stem cells were immediately traveling to the bad parts.

The only time you will get a glimpse of my butt! I was injected in both biceps and on both sides of my glutes. By this time, despite the pretty intense pain, I was laughing at what a weird experience it was.

On my way out, I had to go to the bathroom and noticed how much lighter I felt. It could have been an emotional lightness as I had been struggling for several days with a medical professional having so much confidence in me that I would just fail and disappointment yet another person. Despite many of my medical issues showing up on imaging, lab work, lumbar puncture, and I’ve been injected with so much radioactive material, there’s no wonder I emanate light. (You might not want to get too close as my light could just be radioactive ☢️). I still continue to believe I’m somehow “dramatic”.

I was told I might experience some immediate improvement and some will come over the coming months.

My biggest notice is that I had to text a LOT of people to give them an update. About 5 seconds into texting, my right hand goes completely numb. Switching to my left, it will go numb too. No numbness for either hand after injections today! I honestly can’t believe it. I almost keep wishing it to go numb as there’s no way possible…

Except it is possible as I have typed and typed tonight with just a slight bit of tingling. I guess all that arm pulsating was going straight to my right hand!

Stem cell therapy and its applications are very experimental and people sadly get lost in a circle of unethical doctors just trying to make money. So they sell you just enough hope to keep you spending thousands as people will spend thousands once they get a touch of normalcy.

I was given a gift of a medical professional watch me decline over nearly 2 years rather rapidly and had a belief in me. She is only the latest in a series of several people who have believed me in ways I could never find within myself until recently.

I’m sitting in huge gratitude for the procedure I underwent today simply because I am worth it. So many people have gone above and beyond for me since the beginning. So tonight I don’t sit here worrying I will fail. I’m sitting in huge gratitude that my really hard work, which sometimes looked like laying in a psych hospital trying to figure out a reason to continue, is coming full circle that maybe, just maybe my trauma recovery will be matched by at least a partial to complete physical recovery allowing me to make some of my dreams come true. Those dreams have so much to do with giving back and being a beacon of light I desperately needed when I had no desire to continue and was in a constant state of plotting how I was going to kill my self in my 20s.

It really is amazing what happens when you get to a place of recognizing far I’ve come and the intense amount of work I put into it. Life is still not a simple ball of rosiness. I’m sure I’ll still have those moments or days where I’m curled in a ball convinced that no one cares about me.

For now, I will accept that a lifetime of so many difficult times marked by just wanting life to be over as I was convinced that if my own mother couldn’t love me, no one could just means a rainbow driving home from IVIG treatment last week isn’t just a rainbow, it’s a sign of beauty, a natural moment to bring me to tears as I see things just a little brighter after living with so much darkness.

Find your light or beacon or something to cling to. When life has been really bad, it has a higher propensity to become really good. It’s the gift of trauma.

Love

Lizzie