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.



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!!



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)



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.



The Miracle of Miracles is Coming My Way (I Hope)

(Sometimes I don’t even realize how sick I look as I rapidly lose weight and my cheeks sink as I look at pictures like this. Today wasn’t even THAT bad. My scale of what’s good and bad is very skewed I guess)

If you read my blog from very early this morning, it’s practically the next day and still in the same pjs. It’s been one of those 24 hour periods. I was productive, just didn’t have the energy to shower or even get out of my smelly pjs (I get extremely drenching night sweats). It still felt like a good day, which as I mentioned above is so strange how I have skewed what is good and bad.

So people who have followed my blog for awhile know that my health has been on a rapid decline. I have numerous neurological diseases (some autoimmune, some genetic, some who knows?, other autoimmune diseases, an insidious case of Epstein Barr Virus that seems to go away for a second and come back and hit me with a vengeance leading to a fatigue and feeling like I have the flu misery I can’t even begin to explain unless you have severe autoimmune disease or ME/CFS.)

The most recent has been my extremely enlarged lymph nodes in many places and lung nodules, which was presenting as lymphoma. I had my PET scan. I lit up, which is not so good with a PET scan as it usually means malignancy.

It’s been hard to talk about this, not because I’m disappointed, but I don’t think people will understand. It’s not cancer (perhaps you are all thinking hooray!). It’s actually worse as I didn’t think there was treatment for my problem. I have a very serious case of systemic inflammation. Still sounds relatively benign, except the inflammation in combination with the Epstein Barr Virus and the autoimmune (or maybe one does one thing and another does something else) has systemically been attacking my body, (my spine, nervous system, GI, and now my lymphatic system, although I’m not totally sure of all the complexities of it). Even the oncologist said I had one of the worst cases of inflammation he’s seen. It’s not his specialty, but as a cancer specialist, he’s used to seeing very sick people. Both times I saw him, I looked very sick. He admitted that too.

So it’s not a “hooray you don’t have cancer”. It’s more like an “oh shit. I have something you can’t fix”, or so I thought. The oncologist’s recommendation was to go on high dose steroids (can’t do due to bad side effects) and immunosuppressants, which are pretty toxic and dangerous in their own rite as they are essentially low dose chemotherapy.

I went to my primary care Tuesday. We talked a little about my son. She said something along the lines of “we have to work to keep you alive as that will be best for him”. I’m just thinking, “wait, what? The specialists have told me I’m going to die within a couple years, but this is my beloved primary care who isn’t going to use these terms with me as she cares about me too much”. It got very real for me.

She and I have been discussing my doing stem cell therapy for a long time. With cancer looming over my head for several months and nearly certain according to specialists, I wasn’t a candidate for stem cell therapy as it will just go to the cancer and make it spread very quickly throughout the body. Well, I can’t afford stem cell therapy. If I can barely pay my water bill, how will I pay for stem cell therapy?

So things have been worked out. I get my miracle cells on December 11th. I will be starting a sister blog in the next couple days in regards to this health and stem cell journey.

I know many of my readers suffer from a plethora of autoimmune and other rare, misunderstood, or nasty diseases. It often is a side effect of severe childhood trauma unfortunately no matter how much you heal from the emotional part. If you suffer from a rare disease to a sports injury you can’t cure, you can follow that blog, or follow it anyway as the new ways medicine is going is exciting.

Perhaps you would want to travel to my area and get this treatment too (Reno, NV)? It’s a one time deal and much cheaper than functional medicine, naturopaths, private pay doctors offering miracles, or regular acupuncture, massage, a year of copays for numerous allopathic doctors, or supplement regimes that can grow to insane amounts. I know if I would have been able to do this a couple years ago, it would be a tiny fraction of the cost of copays going to doctors, hospital stays, and my IVIG I’ve had 3 times over the past few months.

Will it make me perfect? Probably not. I’m having some calculated hope it WILL improve my life and lengthen it with the strength to do something (not sure what) to see my son again sooner rather than later. I guess I don’t have any idea what to expect beyond being open minded to the idea that I’ll get stronger to also achieve many life goals. I wrote a 201 page book for a freelance contract that I found boring for a reader. I would certainly love to publish my own compelling story of how getting very sick gave me the time to contemplate a lot of life lessons leading me out of past trauma causing me to live strongly, confidently, and with plenty of joy even if the strongest I could do was stay in my bed and compose my thoughts. I have at least 100 pages already done, although I’m not completely sure as it’s scattered among many files.

I suppose as I get that blog up and going, you can follow my journey to see what happens?? I will say someone pretty near and dear to me shared her troubling neurological symptoms that didn’t have a true name but were misery making and autoimmune in nature. 8 months later, she is doing well without neurological problems and appears grateful for her stem cell journey.

It will definitely be interesting. I’m tired of the constant tired, having zero predictability how I will wake up feeling, and having to make the mental debate (if I’m lucky to have some strength) daily of wondering if I should spend my energy doing laundry and some light cleaning or something rewarding to my soul? I suppose we all make those choices, I suppose most people who are physically and mentally healthy (relatively) aren’t floored (literally) by having made sure their clothes were clean one day.

I hope you will follow me on this miracle journey I’ve been given. Even if it doesn’t turn out to be a miracle, the opportunity is enough of a miracle.

I’m definitely sitting in huge gratitude tonight. Just a few weeks ago, a GI doctor told me I probably have 2 years tops. I’ll take even 5 years now as advances in medicine are constantly evolving.

Excited to be planning for a short term future of working at healing and a bit of skeptical hope that I can make bigger goals happen eventually. What a mind shift.

Keep believing you are worth it. Others will follow (and I mean beyond my beloved medical professional. I mean really and genuinely good hearted people who have actions that match their words).

(About 20 years ago when hiking 15 miles in a day felt like nothing. Not necessarily expecting that as a result, but who knows how my life may change for the better??)



Creativity Feels Good For Me

My family thought I should be a scientist or an engineer or “something that would actually make money and not waste time”. I understand their reasoning. I got a degree in psychology with my rebellious double major in women’s studies. I went onto a PhD program that I became too sick to finish.

I eventually worked in a stressful counseling job, but I had so many mysterious illnesses that I finally had to quit after I couldn’t get a bout of transverse myelitis to resolve and turned into even more strange things.

It’s been hard to see gifts in life lately. I lost my son for a completely unjust reason and now know what my son is being told. It’s completely heartbreaking. I will eventually muster the strength to fight. Right now, I’m resting and rejuvenating. My gift is that I don’t have to be a scientist or an engineer. I can just be me.

I’ve been pretty sick since the end of July. I’ve been pushing through with the help of IVIG and a couple medications to help handle symptoms and combat fatigue.

My last round of IVIG didn’t give me the huge boost I usually get. Perhaps I’ve been doing too much, or at least dreaming of doing too much, while really doing nothing except wanting to do things I can’t anymore.

Grieving my son takes energy. Setting boundaries with people takes energy. I often tell people who understand that, “I have less energy than money, so you know that’s hardly anything”. The reality is that grief and boundaries will eventually come full circle to make me a better person and to protect my least abundant resource, energy.

I realize it already has. I’m meeting new people who feel more genuine and authentic than I even knew existed in this world. My new forming community over the last 18 months doesn’t expect anything of me. They give to me just because. It doesn’t have to be an equal exchange, or often any exchange at all. Unconditional love??

I went on a hunt for new community when I realized many old friends and “chosen” family didn’t like the strong woman I had become who had a voice to say, “I will no longer be treated that way”. Somehow I wiped doormat off my forehead and put a beautiful one on my front porch, where it belongs.

I also know things are coming back around as I haven’t painted in 4 months. I was going back to those old thoughts of, “why bother? I’m not good enough”. When I took the expectation off myself that everyone has to love everything I did artistically or feared someone telling me “it’s terrible”, I could be creative.

When I take the expectation of “why bother? You’re not good enough” off myself, I can soar, even if I do require about 14 hours of sleep right now as my body is very sick. Luckily, I remembered my mind is clear and strong, and the ability to recognize the good amidst a ton of chaos returned, well at least for right now!



Getting People to Understand Rare Diseases and How We Can Do Our Best to Be Better

There is not much doubt that there is a connection between childhood trauma and chronic illnesses. I recently read that people with an ACE score (adverse childhood events. It’s a 10 question basic survey that asks about a variety of traumatic experiences during childhood) of 5 or higher have a statistically much greater likelihood of dying at least 20 years earlier than the average person who hasn’t experienced those events. I took the quiz. I had an 8. It was finally something I felt grateful to not have a “perfect” score of.

So does having a high ACE score mean that your chronic illness(es) are your fault? I’m going to give a resounding NO!!

I’ve been in a place of feeling a bit crazy about whatever is going on with my body. I test positive for some and negative for lots of diseases. Some of my health issues have become clear. Some of it is still mysterious. I keep getting referred to specialist after specialist lately to figure out the last of my most troubling symptoms. They refer me to bigger medical centers. I go back to my go to of my biological family telling me “you’re just being dramatic”. What I realized today is that none of the specialists are calling me “crazy”, they have just been validating that I have something complex and systemic and beyond my smaller city’s scope of expertise. I’m kind of done with specialists as I avoided them for a long time except a two week heart rate monitor I wore indicated an issue with my heart. (Duh? My heart is broken over missing my son. I’m all seriousness, I don’t know but will be getting to the cardiologist soon.)

We live in a world of social media where everyone lives a perfect life with perfect houses and perfect children and just perfect, perfect, perfect. It’s been upsetting me as even though I personally know a lot of it to be utter hypocrisy on behalf of those posting as I know what is really going on in their lives, it has left me feeling like I’m the only one suffering. I work to be authentic on social media, but I fall short on it too.

In the past couple weeks of seeing this new counselor, I am prioritizing how I’m spending my time so I feel I’m living a fulfilling life instead of depressing myself with social media or other tasks that are completely useless to making me feel good about myself. I’ve been wasting time on soul shrinking activities versus soul growth.

I’m still grieving hugely over the loss of my son, which I hope someday I can tell my side of the story as it’s very compelling. I’ve also been grieving over my losing function and abilities rather rapidly since July without a real answer why except that it’s kind of the nature of neurological disease.

So back to the ACE score and how dire it sounds. There are many things you can do to mitigate having a traumatic childhood impact your health seriously. Good trauma therapy is a start. Other things were suggested like healthy diet, maintaining a healthy weight, yoga, exercise, meditation, and forming healthy friendships and relationships.

I truly am working to evict the idea that my illnesses are my fault as I do all of the above and more to be well. Sometimes it gets frustrating to take such good care of yourself for nearly 2 years and still get worse physically. I do know that I continue to get stronger emotionally. I may have intense moments of sobbing and grief over missing my son, but that IS emotional health. If I numbed it out and pretended it wasn’t happening that would lead to a ton of anxiety and depression.

I’ve been working to cultivate community locally, not online. I’ve had to do a lot of my goodbyes to social media, which has been mixed. My instinct is to grab my phone and scroll through my list of “friends” so I can connect is still strong. I realize it’s a better expenditure of my time to leave that alone to pick up the phone to make a plan with someone locally or read a book or enjoy our unusually beautiful weather we are having.

I know for people younger than me (I’m 43) in person connection can feel foreign, especially if you are also managing social anxiety. I will tell you that a real hug is way better than someone sending the gif that says “hug loading”. I get it’s a nice sentiment, but it personally makes me feel awful.

So it might be too late to not cut my 20 years of my life short that my ACE score is a good indicator that I’m at risk of, despite my best efforts. So I hope for people of any type of trauma background that you learn about ACE and how it can change your life if you don’t be proactive to change it.

The above picture is a few days before I had my long overdue IVIG treatment. The one on the right is after recovering from a couple days from it. I would say that treatment may not cure me, but it can at least give me the energy to smile again and remember why even hard lives are worth living.

My final note about rare illnesses is that it’s really important for people to see you and how bad off you are on the worst days. I can’t really fault friends who don’t believe how sick I get if they never see it. I wish my primary care could see me on my worst days, but I can’t drive those days. I know she reads this occasionally. Perhaps she will see the marked difference in how much better I look after getting treatment.

Regardless, I just want people to know if you have a childhood of severe trauma, take your life back by taking care of you beginning now. Don’t become another ACE statistic and die 20 years too soon. There’s a lot of wonder in this world that I hope all my incredible self care will someday come to fruition and feel well enough to have a bigger bucket list than “maintaining clean underwear”. (That’s supposed to be more for a laugh than sound tragic).

Take care of yourselves. You certainly deserve it even if no one ever told you that you did.