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

This Might Sound Controversial if You Love Your Psych Meds

The above is a sample of my daily diet often. I’m a stickler for getting my 7 servings of fruits and vegetables. I’m not a health nut. I wanted to cure my mental health. I was hoping to cure my body too, which i know it’s helped, but it obviously hasn’t been a cure. I always strive to not eat junk. And lots of stuff labeled “healthy” is still junk.

If you read my last post and how I couldn’t pass up sale Reese’s peanut butter Christmas trees, you will understand how I can’t overindulge or do much indulging at all. I felt physically exhausted for over a week as I had a literal sugar crash and my mental health went into the toilet.

People with trauma, PTSD, depression, anxiety, or other mental health conditions often take medications. How many times have you gone to your psychiatrist and said “my meds aren’t working” and you get a change, or worse, you end up on another to help the side effects, meanwhile you still feel totally stuck and mentally miserable.

A lot of people know I came off psych meds completely. People have been asking me “how on earth were you capable??”

I had a psychiatrist for a long time who would give me meds, I’d have a side effect, so I got a med for that side effect, and it went until I was on 10+ psych meds. My psychiatrist didn’t really believe my trauma, so I got labeled with “schizoaffective disorder”.

I was lucky to meet a psychologist in my short stint of part of 2017 when I had to stay in Texas with my family when transverse myelitis forced me to stop working. My psychologist didn’t believe my schizoaffective diagnosis for a second, but I was adamant. The truth is at the time that psychiatrist put me on all those meds, I was working really hard in my trauma, and it was painful and overwhelming. I was presented with the idea that all these meds would “cure” my mental health problem.

So back to Texas and my psychologist. She finally sent me to a psychiatrist she really trusted. I went to see her. She gave me the basic questions of asking about my childhood, my psych history, what meds I’d been on (literally every single one), and within 5 minutes, she looks me in the eye and says, “you are schizo nothing. You need to really get good trauma treatment and find a doctor that believes your health conditions and go live your life”. That was the summer of 2016. My psychologist confidently said to me after that psychiatry appointment, “why would you want to be schizoaffective? You never heal from that. You can heal from trauma”. Still love her so much.

We began a slow taper off all these crazy making, not crazy curing pills. It was lengthy and wasn’t done with it when I chose to go to an inpatient trauma program followed by residential treatment for trauma or my “trauma resort” as I refer to it now. They helped continue it though.

My individual therapist at my trauma resort said that getting off psych meds was going to be like an addict getting off drugs. Psych meds mess with the same chemicals street drugs do, they are just legally prescribed. You will feel terrible. There will be huge highs and terrible lows, but she assured me I could do it. She said to give it 18 months for my brain to naturally make all the chemicals that had been changed over the years.

As those meds left my system, my creativity came back. My desire to read books and listen to music and my love of writing returned. It was like there was a wall built up in my brain that separated basic functioning from what makes me unique. Best of all, I could feel again. I could cry and see beauty of sunsets. My childlike fascination of the mountains resumed just like when I moved here when I was 10 and had never seen a mountain. I remember our house when I was 10 sat on the top of a hill and would just stare at the majesty of the mountain peaks surrounding me. I can still see them out my front window, not great, but driving around, I often get teary at their beauty. Here’s a picture I took while driving to my IVIG infusion today as I just love them.

So back to being psych med free. I took my last anti depressant and official psych med December 22, 2017. I definitely caved in April of 2018 and saw a psychiatrist as I thought my grief over a very bad situation(s) was abnormal. Crying didn’t feel right. She prescribed me one. 3 days in, I guess you could say I went into a hypomanic phase. I spent a bunch of money on a credit card I couldn’t pay back, and the world suddenly felt over the top rosy despite nothing about my life circumstances changing. I immediately emailed my psychiatrist and asked how to get off of it. She didn’t say “let me call in a mood stabilizer”. She told me to stop taking it.

Getting off psych meds doesn’t come in a vacuum. I put a link here as I was SO happy to see psychology today actually publish a piece about healthy eating as a cure for symptoms of trauma a few days ago.

https://www.psychologytoday.com/us/blog/think-act-be/201912/can-the-right-diet-help-you-heal-trauma

For me, getting off psych meds hasn’t just been healthy eating, it’s also been a commitment to mindfulness, to yoga, and other exercise as I can tolerate to get back into my body instead of the disconnect so many trauma survivors feel between their head and physical body. If you are a trauma survivor, you know exactly what I’m talking about.

It’s also been about setting boundaries with people about what I can and can’t do. If they won’t discuss it, I get pretty done at that point. I never claim to be 100% in the right, but I have had several people hurt me and when I mention talking about it, it gets ignored. I have realized that if you don’t care to talk about how I’ve been hurt, then the message for me is “you don’t actually care about me”. Maybe I hurt the other person too? You never can know if there’s no conversation. It’s not an argument. It’s a discussion to bring you closer or closure.

So I’m not saying to run to your psychiatrist and say, “take me off these pills. Lizzie did it”. It was a very very very slow taper off. I have had to take a couple meds for some anxiety over the past couple years. The med I’m prescribed by my psychiatrist is technically for anxiety, but we both know I use it for my terrible muscle spasticity. It’s the only thing that will make my legs relax, especially when my toes curl so tight that I can’t release them. Example A:

My leg was rigid, and my toes wouldn’t move. Do I like that I have to take any meds? Not really, but most psych meds started out for neurological problems and turned into psych meds. With drug laws being what they are, she really is the one to prescribe it.

So I do encourage you to come off psych meds if you are committed to about 18 months of a bit of craziness to gain what I have, a life that is extremely fulfilling even with it being so hard and unfair.

I still have my “bad” days, but bad days just means nothing really. Anger or sadness isn’t bad just like joy isn’t bad. Emotions just inform of us how things are. We all deserve to cry in anger and enjoy a beautiful sunrise.

And I will say at 18 months, practically to the day, I felt much calmer and peaceful.

Don’t stop your meds if you don’t plan on pushing yourself in every way possible. It’s a lifestyle commitment. I was just happy to be validated by psychology today that diet and gut health are huge for mental health. It doesn’t mean you can’t have a little food indulgence. Wouldn’t you rather trade that box of donuts for some inner peace?

Just so you know I’m not full of BS. I used to eat sugary cereal for breakfast, go to work and grab fast food for lunch, and had a box of cookies or donuts for dinner. I drank 12 diet cokes a day and smoked at least a pack of cigarettes too. My quit smoking anniversary is January 5, 2018. Coming up on two years for that too.

This hasn’t been a subject I have wanted to broach as we are taught to NEED our pills. If your problem is truly a root of trauma, meaning I don’t care if they call you bipolar, schizo something, borderline, major depression, generalized anxiety, meds will never fix the trauma. Only you can do that with a supportive community of maybe a therapist or a family member you trust or a friend. I did a lot of it alone as mental health professionals kept wanting to medicate me. It’s not what I wanted.

I love that my new counselor has never mentioned medications, and my psychiatrist refuses to put me on any.

If you are truly interested in getting off your psych meds, Send me an email. It’s a commitment beyond not taking pills. It’s a lifestyle change. And definitely one of the most worth it I ever made.

And just because I cry at everything and anything now ( love it about myself), here’s a beautiful sunrise I actually went out in the cold to watch. It was amazing. My medicated days, I wouldn’t have even noticed.

Best of luck in whatever you do for healing. This has just been my way. Even if you think it’s a bunch of fluff and would never work, Ive been there, so thank you for reading until the end.

Love

Lizzie

Coming New Year. Coming New Decade. Many New Changes Coming.

If there’s something I’m sick of, it’s being sick. I’m sick of my physical symptoms. I’m sick of worrying how it will or won’t hold me back. I’m sick of not knowing about an uncertain future.

I don’t have control over any of that. I just have control to take care of myself. I slept and was very sedentary for a week feeling terrible. This wasn’t depression as a good friend pointed out as as soon as I had energy, I was up doing laundry, getting things done (in a calculated way), and I didn’t give up hope while I was being sedentary and restful that week, I was still plotting and planning for a future I still hope to have.

The old inner critic of “you’re doing nothing and wasting your time” definitely kicked in, but it was pointed out by a mental health professional that I wasn’t doing “nothing”, I was giving my body the space to heal to get back up.

So I’m a little embarrassed to admit this, but I’m human and believe in being authentic. A couple weeks ago, I went to the pharmacy to get my prescriptions and happened to roll down the Christmas candy aisle. I usually wouldn’t give it a second glance, but I have ALWAYS been a glutton for Reese’s peanut butter Christmas trees. They had two bags on sale for $4. Unheard of! I rarely eat refined sugar, let alone any junk, but I took my two bags and had enough points on my pharmacy card that my two bags of sugary goodness that would turn to sugary hell ended up free. It was a sign, right? Wrong!

Along with eating both bags entirely in one night (keep in mind I’m usually stressing about eating my 7 servings of fruits and vegetables in a day), this was a disaster as I saw that even though my dogs food was wheat free, the second ingredient was “barley”. I have celiac disease. Barley is a gluten grain. So I have contaminated myself with sugar intentionally and unintentionally with dog food. (It’s a lengthy explanation of how barley in dog food could make me sick as a celiac. Google “cross contamination” if you’re interested.)

We are about to turn into a new year in 21 days where I’m at, but it will also be a new decade. Lots of speculation about big changes happening. A yoga class I went to Monday night was talking about changes happening even on a cellular level.

I’m supposed to have stem cell therapy on December 17th. I’ve been going back and forth in my mind if I really wanted to do it. I definitely do want to do it, but I guess the fear is that it won’t work.

A dear friend recently went for a relatively new treatment for PTSD called a “stellate ganglion block”. She very poignantly wrote about tears flowing down her face, not because the anesthesia hadn’t kicked in or that she had a huge needle in her neck. Her tears were fear it wouldn’t work.

I realized my hesitancy about the stem cells has nothing to do with stem cells, I worry it won’t work and once again, I’ll just be a disappointment to my medical professional after feeling like a disappointment to so many in a lifetime.

The interesting thing is that I am NOT a disappointment to anyone in my current life (or probably most in my former life). Everyone who I talk to about with in regards to stem cells are excited to know my progress and cheering me on, to not only try, but so many are praying in their own way that it helps me in many ways. I am surrounded by so much love.

And the new decade brings in a new roommate. Not one of those situations that made you crazy in your 20s, but two adults that can live together peacefully and be helpful in sharing my “happy” space as she called it.

This picture was our evening while she was sleeping waiting for her ride for work with my one dog while I was reading with the other. Looking peaceful already.

I hope you are looking forward to big change in an uphill direction in the new decade. There will be dips, but where were you in 2010? I was certainly in a lower place, emotionally and even physically as I had health problems, I just couldn’t find a doctor to listen or believe me.

Looking forward to 2020 with tears streaming down my face not because I’m afraid it won’t work, because I’m grateful to give myself the chance to know it just might.

Love

Lizzie

Boundaries Revisited From a Spiritual Perspective and Why They Can Seem so Hard, Yet so Necessary

So, first, this isn’t my sexy bathtub picture. This is a representation of the beauty of what setting boundaries has done for me. I’ll get to the explanation of it in a bit.

I was given a book by this counselor I’m seeing at this Christian Church called “Boundaries” by Cloud and Townsend. The thing I have been discussing with her the most is how setting boundaries has had terrible ramifications for me and feel wrong for doing it.

I happened to mention something along the lines today of “truly realizing and becoming a strong woman has become the worst thing ever”. I said it slightly different and meant it as an irony as I’m definitely happy I’ve come to know my strength, but it’s REALLY hard. She stopped me and told me that the power of language is powerful and that there is not one strong woman in history that ever had it easy. She’s absolutely right. Standing up for what is just, right, doing the loving thing for self and others, and demanding to be treated kindly isn’t simple.

So she gave me this “boundaries” book. I was excited to read it along with about 20 other books I have stacked up around my house. Due to my neurological diseases, autoimmune diseases, chronic pain, and who knows whatever else, it’s really hard for me to hold a book laying down, which is where I find myself often.

It might sound strange unless you experience it, but a book feels too heavy and awkward. It makes my hands go numb. The kindle app on my phone will make my hands go numb even quicker. My iPad is even more awkward for laying down. My only reading time is when I’m sitting up in my living room, which I often reserve for friend time or business or pleasure type phone calls, or creative endeavors. The other problem with reading on a kindle app on your phone is that even with turning it to a night mode, you still end up with that screen light disruption from sleep.

I basically gave up on the idea of reading as it wasn’t feasible for me. I know many of my chronically ill friends enjoy audio books, but I find them hard to follow, the noise too stimulating, or I’m asleep within minutes. I was the kid that would pretend to go to sleep and pull out the flashlight to read for hours under the covers at night. Books were an escape from a traumatic childhood that I know many others that used as a coping mechanism.

Something I learned from the “boundaries” book is that boundaries are permeable. A direct quote from the book in regards to people who experienced trauma as children is that, “they reverse the function of boundaries and keep the bad in and the good out.” I cannot even begin to tell you how many people I know who surround themselves with people who are bad for them. Raising my hand super high for being that person who still finds myself doing it occasionally!!

I was afraid to set boundaries as I didn’t want to end up alone. Well I set boundaries and was totally alone for a long time. It was painful. In that time of being pretty alone, I contemplated a lot, including deciding I must be a terrible person. (Umm. Nope!) I even went back to some of those people and groveled for their forgiveness with apology after apology. They wouldn’t accept it as they didn’t have impermeable boundaries, they had walls. I’m SO glad they didn’t accept me back into their lives now as I would just be back in utter misery.

The hardest boundary I had to set was with my son’s father. There were some troubling things I wanted to discuss with a neutral party. I never claimed perfection, but I was tired of the blame going back and forth where I never got a voice. I knew I had an extremely special relationship with my son. We had some difficult times on my harder days, but we did some amazing things like two incredible camping trips this past summer with a disabled mom that took him all by myself and the exclamation of joy when he caught a fish was an incredible moment I will always remember. I hope he does too.

In saying we needed a neutral party, I said I would take him every few weekends until we could come up with a plan and he could call whenever he wanted. I was blocked from everything the next day. That was exactly 3 months ago. My medical and educational rights were removed. Lies have been told about why I “disappeared”, but I had to set a boundary. I am strong. I grieve my son constantly, but I will not be broken by it. When we reunite, I want him to see the same strong woman he saw the last time we spoke via FaceTime 3 months ago.

Despite the ugliness of the ramifications of that boundary. It had to be set. I won’t go into the history of why, but I will say I have truly embraced the concept of “love thy neighbor as yourself”. I love myself. I send love to my son’s father so he has peace in his heart and is living with love and contentment as that’s what my son needs, and I always hope he will see my importance to my son and in his life.

So back to my “sexy” bathtub picture. I am reading on my new kindle. It weights about 6 ounces. I can hold it with one hand. It’s waterproof!, meaning I’m more apt to take my Epsom salt/baking soda/ aromatherapy baths to help my chronic pain as I can read forever as I luckily have an awesome water heater in my old house.

This kindle was on a Black Friday special gifted from a very dear friend as part of a Christmas present that might possibly be better than the “Barbie dream house” I got when I was 6. I got back the gift of being able to read that I have terribly missed without figuring out.

Boundaries have taught me to be surrounded by the good, to be permeable, and that it is absolutely ok to cut people out, and to say no even to my new wonderful friends if I just can’t. If anyone is interested in having a conversation about why, I will. I have also learned there are people with healthy boundaries and people with unhealthy boundaries.

People have cut me out. As I look at them, they are still stuck in being in that need to be surrounded by that wall of bad. They would never give me any explanation. You know you are there when you refuse to get help, stay with people who make you feel bad out of fear of being alone, engage in self damaging behaviors and so it goes. This isn’t my opinion, I read it straight out of the book and it resonated, as I’ve been there. I stayed there a REALLY long time. I have no judgment.

If you are locked in a boundary wall of bad, learning to set boundaries, feeling guilty for setting boundaries, or need a reminder of how great boundaries are for all of us, I highly recommend reading it. (I’m only on chapter 3, so my 5 star rating may change, I’ll get back to you just in case 😊). It is written from a Christian perspective, but I find it loving, not the hate filled rhetoric I grew up with and unfortunately gets the most attention in the media.

Go set some boundaries. Let them make you feel terrible for awhile. Then feel them come full circle to grieve what you lost and rejoice in what you are gaining–SELF!!

Love

Lizzie

A Gratitude Practice That Actually Works For Me

The big thing lately in psychology to turn anyone’s frown upside down is to have a gratitude practice. It’s suggested that a regular gratitude practice changes your brain chemically to be happier. There is now science that backs it.

The suggestion is always to keep a gratitude journal where you write 10 things you are grateful for everyday in a special journal. You can even buy special gratitude journals that are sold in bookstores and online everywhere. It all felt like a lot of work to me. I can probably think of hundreds of things I’m grateful for in a day and often do even on the worst of the worst days. I somehow got born with the gift of being a natural optimist. Some days, it’s definitely not hundreds, but having a soft blanket and a couple irritating dogs to snuggle with are constant reminders of the good in my life.

I went to residential treatment, which I call my “trauma resort” for my childhood trauma in 2017. The above picture is my gratitude jar. It’s looking a little sparse for what it should be. The massage therapist/aromatherapy teacher there told me about this gratitude practice where you write one thing a day everyday for a year and on New Year’s Day, you open the jar and read them. That felt simple, doable, fun, easy, and a good activity to teach my son.

I was really good at doing it before bed as part of my routine. My son often did it with me when he spent the night as I felt it was important he recognized gratitude when he had been experiencing plenty of difficulties himself (having a sick mom was only a fraction of it).

Then I started in with the multiple hospitalizations for physical illnesses in March, which got me out of the practice. I think I just forgot as the jar is in my dining room, which I don’t use a lot except to pile my mountain of medical bills in.

So I think gratitude, but I wasn’t doing a tangible gratitude practice, which is the part that does the neuro plasticity to make you more joyous. I remember sending the woman who told me about this particular gratitude practice a message that I hadn’t done it for awhile and felt bad. Her response was something to the effect of “there’s no one right way to do gratitude”. She’s right. I was trying to do gratitude perfectly. Ha! Perfection is not something to be grateful for.

Tonight, I finally remembered to get back to my gratitude practice. I could have written a hundred more, but it was getting late, and I liked that I wrote several. So if I forget tomorrow or for a week, I can do it whenever or however as there is no, one right way to do gratitude.

I have plenty to be sad about lately, but I also have a lot to be extremely joyous and thankful for. I was in a pretty good place when I wrote these several down, but I felt even better once I was done. As my energy levels have dropped drastically, I have to use my energy wisely. The 10-15 minutes I did this was much better than scrolling through fake Facebook, which I am limiting to 10-15 minutes a day as well. I make my quick posts. I don’t care who likes it or not. Unfortunately as someone who is working to near completion on a book, I have to publicize my blog and parts of my life via social media.

I do encourage a gratitude practice even if things are very bleak. I obviously didn’t do it everyday this year. I probably won’t even look at it New Year’s Day, but maybe when my jar is full, I’ll just get another jar and begin again. Perhaps I’ll look through them someday. Maybe someone will be lucky enough to inherit my gratitude jars (about the most valuable thing I have!)

If those gratitude journals seem like too much work for you like they did me. Maybe one thing a day or as often as you can, even if you throw it in a paper sack will give you just that boost of good brain juice you need. I’m also not endorsing you forget what hurts or makes you sad, but just a little gratitude can go a long way to move through the misery instead of staying stuck in it.

I also want to put the disclaimer of nothing that I say is about my being perfect in how I do it or that my way is the right way. If you were lucky (or unlucky) to know me prior to 2017 and really know where I was at, I was really stuck in misery. If you would have told me to do a gratitude practice, I would have smiled sweetly and said, “thanks for the suggestion”, but in my mind I would be thinking you were full of garbage and thinking you should just go jump off a cliff with your positive BS. Just want you to know I’ve been there.

(Writing out my gratitude notes)

Love

Lizzie

I AM Thankful, But I Also Honor My Fear

(The top two pictures were my doing yoga today. It was all I could manage. The bottom two were from September 1st and part of an hour long practice I did)

Tomorrow (or today) depending on your time zone, we celebrate thanksgiving in the US. For the Native Americans, it’s often a day of mourning. For people with childhood trauma, it is often a day of mourning as well.

Many will spend this day alone as their biological family isn’t safe or they have been ostracized for telling things they “shouldn’t” have told. Many with childhood trauma will feel it’s their fault they are all alone and use it as an excuse to validate that they truly are the “bad” person they have felt they were as children. It’s not your fault, just like the abuse you endured is not your fault.

It’s sad. It’s actually tragic and wish I could have all the ostracized and abused at my house not to lament how terrible we are, but to celebrate how wonderful we are that we are still making it!!

I will talk about my mourning part of thanksgiving and then talk about how healing from trauma will make my thanksgiving a day of thanks.

The above picture shows how much I’ve changed in less than 2 months. I’ve lost nearly 20 pounds. My muscles are atrophying despite trying to stay strong. I’m extremely and debilitatingly fatigued. I’ve been slurring my speech more and more and usually won’t talk to people or will cancel commitments as it’s embarrassing. I had to get a nerve block yesterday morning for my occipital neuralgia. I decided I would go anyway so my primary care could hear me slur as I knew she wouldn’t think I was having a stroke as other people have and called the paramedics. I’ve realized it’s important she sees all my symptoms. I have spoken to her so many times over nearly 2 years very clear spoken that I figured it was time. I didn’t get a “you’re faking this” sort of look like I have from neurologists in the past. I got a hug.

I also realize people have to see me in my bad places as with losing 20 pounds, people say to me, “you look so great skinny”. I’d like to run them over with my wheelchair tire or stomp their toe when I’m using my crutches. Losing 20 pounds in 2 months when you are eating more isn’t normal. My normally athletic body is covered in stretch marks from the rapid weight loss. I now have old pictures from high school. I was bigger then (not fat), but I was healthy.

I of course mourn my son several times a day, but I know the truth will eventually come out, and I will see him again.

So onto my thankful part. After IVIG a couple weeks ago, I stopped by the gluten free bakery (which I NEVER go to) to get a very tiny and over priced quiche. It was the closest thing to the infusion center that would have something I could eat and when I become starving, I don’t just get irritable, I get fall over fatigue sick.

At the bakery, I ran into a lovely couple. The wife has hashimotos, EDS, and a number of other unnamed symptoms that are similar to mine. We started talking treatments and local doctors and such, but she became very tired, so we exchanged numbers with a promise to see each other in person soon.

I haven’t felt well. At the beginning of this week, I apologized for disappearing and hoped they had a good thanksgiving and said we could get together after the holiday. I was prepared to spend it alone as I’ve needed a lot of rest lately. She mentioned that they didn’t really have any family anymore and probably weren’t going to do anything. I pretty much said the same. She suddenly exclaimed, “why don’t you come here?” I have learned that when people offer, they are genuine and immediately accepted.

Within a couple days, we were discussing our different food “issues” that go along with people trying to heal from autoimmune disease. It was so refreshing to be making plans to be cooked for and cooking for others where we could actually enjoy each other’s food. I’m so used to bringing my own as it’s so complicated. She kind of closed the conversation talking about family members that had died recently and said she had been praying that someone would show up to give her a reason to celebrate thanksgiving. She said to me, “then god gave me you”.

I will explain to her tomorrow how much that means to me. As someone who is building community and has felt very unloved for a very long time and god being a very sensitive subject for me growing up, it meant a lot. Probably much more to me than most.

As I have chosen to set boundaries and surround myself with amazingly wonderful people, they fill me in great ways. Some I give back to. Most expect nothing. Many just admire my tenacity.

This final picture is my look of total amazement of someone I met who heard what I read last month and got people he knew, but I didn’t know to send him cards to support me in what I’m managing and made me this shirt too. He sent the whole package to me. I’ve literally met him once, and he did this for me. Loving people are out there.

Show your tiny light and loving soul and only demand the best for yourself. There will be some serious growing pains, but the great thing is that there are plenty of people who will grow with you or next to you or hold your hand as you do instead of trying to keep you small.

Love

Lizzie