Normalizing the Bad Feelings

(This isn’t my artwork and unfortunately don’t know who to give credit to)

I hope by telling you about a conversation I had, it may normalize things for you as well.

I went to my psychiatrist today. I haven’t truly taken psych meds in about 2 years, but as someone on disability, I have to have someone vouch that I’m “crazy” when I’m up for review even with all my physical disabilities.

I told her about my recent health crises. She said something along the lines of, “you’re so inspiring to probably more people than you know. You are a voice of hope. It must be exhausting. Who takes care of you?” By taking care of me, she didn’t mean my daily needs, she was talking about who listens to my fears and worries. I had to tell her besides a woman I regularly text in Florida, no one. I have fear about talking about how hard it is. Ever since they started using the cancer word in regards to my health and reached out to a dear friend about my fears and got rejected, I don’t like to talk about it. I understand why my friend can’t deal with it. She’s had family members die of cancer and admitted she can’t watch it. Understand yes, make me feel extremely abandoned, a definite yes.

I am in horrendous physical pain constantly and you add that I can’t share my true feelings with anyone about what I go through, it’s a recipe for disaster. I’ve been wanting to get the next statement off my chest and will preface this with I have NO PLANS TO DO THIS AND WOULDN’T. I next told my psychiatrist that with all the physical pain and isolation, I think about suicide a lot. Her response was, “sounds normal”. I honestly wanted to leap from my wheelchair and hug her!

Sometimes when something is so heavy on your mind but realize it’s not something you would do, you still don’t want to bring it up as medical professionals are trained to freak out. I also love and appreciate that my psychiatrist realizes I’m absolutely not depressed. My suicidal feelings are a result of being very physically sick and chronic pain, unless you live with it, is an extremely exhausting and overwhelming process. I still enjoy my good days like no other and when I’m having a bad day, I close my eyes and think about the good moments.

So not everyone has the ability to have such an understanding psychiatrist or doctor or even friend when it comes to suicidal thoughts, so I’m normalizing it for you. If you are managing lots of illnesses that have completely changed the trajectory of what you thought your life would be like, it’s totally NORMAL to get hopeless about it from time to time. Of course, if you feel imminently suicidal, please go to an emergency room or call a suicide hotline.

I am NOT imminently suicidal or even depressed. I just have a body that continues to fail me and it was an extremely hard couple weeks with IVIG infusions and subsequent side effects and not having the medical support of my neurologist.

Regardless, I’m still mostly grateful for every moment I continue to breathe no matter how painful it is.

Love

Lizzie

Causeless Joy

Causeless joy? What could that possibly mean?

Well, it’s a concept my meditation teacher taught me a year ago. It’s the idea (at least how I understand it for me) is that material things, places, vacations, people, family, friends, geographical location don’t cause joy. Joy is something that comes from within and just is, because we exist. As a former shopping addict who only had joy when acquiring stuff, this felt foreign.

It’s a pretty radical concept for me to embrace as my body has been riddled with physical illnesses and pain. How can you have joy when you can’t even come close to living the life you want? I’m not entirely sure I can answer it, but for me sometimes just knowing I’m still taking another breath will bring joy. It also sometimes brings heartache as my body is so diseased and painful that I wish it would give out already, especially in those moments I feel so alone.

So causeless joy is something I’ve thought a lot about today as I’ve been riddled with a horrible migraine for a week from IVIG treatment without any medical support to get through it or know what to do about it as the neurologist never called back after I returned their call.

When you are in so much pain and the slightest amount of light makes you vomit, how can you find joy? Well I didn’t mostly, but I remembered that even if people aren’t checking in on me, it doesn’t mean they don’t care. Just because I mostly walk through life very alone (I have incredible distance support and a couple local friends who help as they can), I have to be joyous in just knowing myself and however many more days, months, or years I walk this earth are a gift.

Reality is I’ve really wished my body would die this past week. Nothing suicidal, but when you’ve suffered as much as I have physically this past couple years, it’s a reality. It’s not about depression, it’s about how much physical suffering can the human spirit take, especially alone.

Today, I had the memory of my meditation teacher teaching me about causeless joy. I’m working on embracing it over the suffering.

How can you incorporate a bit of causeless joy in your life? What does it mean to you? Is it a possibility?

The top picture is the day I was introduced to the concept of causeless joy. I was totally sick that day, but I stopped for a moment of sunlight on my way home from my meditation teachers house. This second picture is obvious how much I am suffering physically today, but I’m still looking for causeless joy in a life that has been feeling entirely empty of anything good.

Love

Lizzie

Abandoned: Probably the Wrong Assumption

After days and days of horrible migraine, nausea, vomiting, losing my appetite, and shivering, for almost the entire IVIG week and the subsequent days after, I called the neurologist. I was promised pre infusion that if I had any complications, they would get me in immediately.

After suffering through the weekend, I called the neurologist first thing Monday morning. With my light and noise sensitivity being so bad, I probably whispered in the phone, “I’m having bad complications from the IVIG”. I got a hasty reply of “go to urgent care”. I gently reminded her I was told I would be seen immediately. I then got a hasty, “well, we have no openings”. I asked if I could at least leave my symptoms as I personally knew I’d have to go to the ER and ours is generally a 4 hour wait. There was no way I could manage that. I didn’t receive a call back.

It was strange as I’ve NEVER had a bad interaction with them. In fact, I genuinely appreciate them. Being a survivor of developmental trauma, I immediately go to the idea that I must be the one that did something bad. With my trauma healing, I recognize I’m actually not the problem in most cases. Making assumptions about why people are acting the way they are will only lead you down the dark rabbit hole of despair and isolation. Yes, I went there for a bit, but I also recognized I was sending myself there. I also realized that several days of being in a literal dark cave will send you into a rabbit hole of despair too as physical pain is intense.

After taking round the clock nausea medication and some other suggestions from IVIG knowledgeable friends, I felt slightly better today. I was even able to get my new, sparkly pink wheelchair. (Making the transition to a wheelchair is a whole different topic I’ll save for another time)

I just wanted to make the point that making assumptions about others behavior is damaging to only yourself. After my assumptions being proven wrong, time after time, I have figured out it’s pointless. If you need clarification as to why someone is behaving a certain way towards you, just ask–gently. And the neurologist called 2 days later. I missed the call as I kept my phone on silent.

Love

Lizzie

Post IVIG (PS. I’m hating my physical body right now)

I don’t know if anyone reading this blog has ever experienced IVIG, but it’s always a miracle when your insurance finally approves it and feels like the miracle of miracles is coming.

It was a rough week full of moderate headache, nausea, and debilitating fatigue for the most part, but Friday evening and Saturday morning I felt like I had turned a corner. I had some feeling back in my right foot and Saturday morning gave me energy. I had plans on Sunday to make some new connections and was ready to be social.

Then Saturday night hit. I have been dealing with a migraine headache, been vomiting, slept 18 hours today, General malaise, lost my appetite, and a sore throat. I admit I was feeling very angry that illness has once again ruined my plan to meet new people. I recognize that people don’t understand about my illnesses as they only tend to see me when I feel well enough to go out, which is a markedly different me compared to the one that is stuck in bed most days. It’s just ruined a lot of friendships as I understand it doesn’t make sense.

Perhaps IVIG will still be a miracle for me. I have a couple weeks to be able to tell. I do know that I’ve been debating all day about going to the emergency room as I have the classic symptoms of aseptic meningitis from IVIG treatment. I also know that the light, sound, and long wait in such a public place as the emergency room would be too much given my symptoms.

I posted to a Facebook group about post IVIG yuckiness. They gave me some good ideas about how to medicate to relieve some of this. I took a large handful of pills and can now look at my phone for the first time in 24 hours for any length of time.

I’m still grateful I had the chance to try IVIG treatment and perhaps I will have the opportunity again with a different medication and hydration plan. I do know that right now I’m miserable. I’m still considering going to the ER or just holding out to call the neurologist when they open in the morning.

I’m still digging deep to find my inner peace. I’m so glad I have a deep yoga practice that goes beyond what I do on a yoga mat in class. It’s times like these where I’m utterly physically miserable that my yoga practice is most important. It reminds me of strength of mind and body. I use it to keep calm in the face of huge physical adversity. So despite feeling like my body is having a war inside, I’m calm and still able to have hope about a very uncertain future.

I encourage you to find something that allows you to find peace even in the rough times whether you deal with physical illness, mental illness, or both.

Love

Lizzie

The Hardest Times Are Often the Best Times to Dig Deep

I’m on Day 3 of my IVIG infusions. IVIG gives you the healthy Ig cells that come from between 10,000-15,000 blood donors. It basically gives your immune system a huge kick to just boost you up so that whatever crazy stuff your body is doing to make you sick, it will stop or get a break. It helps with anything from cancer, to immune compromised patients, to severe autoimmune disease, to neurological problems. I seem to be fitting all the bill.

These past few weeks, I’ve felt awful. I think the worst place has been how alone I’ve felt. Plenty of people with serious illnesses talk about people leaving them as people become suddenly very busy once you’re sick. Where someone may have once had time for you, now they don’t. I realize that unless you have been through something very serious or are just extremely compassionate, watching a friend deteriorate may be too much. I just get sad as that despite my body deteriorating, I have become a much stronger and more interesting person.

Nonetheless, these treatments have been HARD on me. Yesterday, I spent the day in bed with a migraine type headache and severe nausea as side effects. I felt alone as I don’t have the luxury of having anyone with the time to just stop by and hold my hand for a bit.

I decided to dig deep. I did a sort of meditation or visualization of all these healthy Ig cells going into my body attacking and replacing my unhealthy cells to get me back to a place of wellness where I can enjoy life again. It was a powerful visual and keep going back to it often in my mind. Health is a combination of mind/body/spirit after all.

I also dug deep that despite feeling so miserable, I woke up this morning with slightly more “pep in my step” and a determination to just keep on.

As I drove the 30 miles to the infusion center, I noticed the perfect early morning temperature you get in the mountains in the that I often miss due to being sick. I recognized that the sun was shining brightly and the mountain tops looked particularly beautiful against the backdrop of brilliant blue sky. I recognized that everything in that moment was perfectly ok.

I think when we get lost in the hustle and bustle of life, we forget to take a minute to notice that the current moment is wonderful. The big picture may be bleak, uncertain, and overwhelmingly daunting, but the moment is exactly as it should.

As you go about your day, notice the seconds where it’s really ok. As my IVIG pumps into my arm right now, I recognize that it is ok. I have a warm blanket on my lap, a caring nurse checking on me, and I’m grateful to just be.

Love

Lizzie

I Am Not Nor Will I Ever Be a Failure

Perhaps if you grew up with an unsupportive family system, you grew up feeling like a total and complete failure no matter how hard you try. I certainly have.

I landed a freelance writing contract a few weeks ago that I was excited about a future of making some money I desperately needed. Unfortunately, when the contract came, my symptoms grew so much worse. How do you explain that to a brand new boss?

At the same time my symptoms got worse, I had a successful fundraiser to get my wheelchair, so my good moments were spent negotiating that.

Last Monday, I had another CT scan showing enlarged lymph nodes again over the course of several months. Enlarged lymph node anything freaks me out with my family history.

With all this craziness going on, the doctor telling me I’m having surgery on my lymph nodes next week and this week I’m spending my days at the outpatient infusion center for IVIG, I didn’t finish the writing contract.

All of my friends are like, “Lizzie, give it up. You have SO much going on”. I have that nagging voice in the back of my head that I’m a failure for not getting it done on time. It’s called my inner critic. It’s hard as I’m super reliable, but all these illnesses are ruining my track record.

So tomorrow I plan to write the publisher an honest message about what happened and offer to finish the contract free of charge as I prefer to stay in my integrity.

It’s been a rough several weeks, but as always I’m looking for what’s going well while being real about what hasn’t.

IVIG infusions give me several hours a day this week to just focus on me. I get to give others information about this miracle treatment, and the following week, I’m meeting a friend of a friend who wants me to write his story.

So perhaps I failed at my freelance writing contract, but I recognize how important it is to write my own book and the stories of others as listening to people fascinates me.

If you have any questions about IVIG therapy and my journey to get here, send a message or email. This was day 1 of 5.

Love

Lizzie

The Storm Hit Me

Do you ever feel chaotic and like you are bending and breaking and it will never end? I used to be that way, but as in my above painting, I recognize my strength.

The past several days, I got hit with a flare of my chronic Epstein Barr virus. I was sleeping nearly 20 hours a day and that precious 4-5 hours I was awake, I was working on my writing, reading constantly to become a better writer, and doing my best to maintain healthy eating.

I was honestly scared as it’s frightening to be so tired you can’t move or think much and even in the couple hours you are awake, you want to sleep. I was afraid I wouldn’t get better this time.

Today, I emerged from my cave, i.e., my bedroom and got writing done, and my favorite is where I create art with my personal quotes.

I felt my limbs bending and breaking these past few days. It was pretty terrible, but I’m lucky to have a friend who is terribly sick that I can message everyday with my fears and she always responds with the appropriate encouraging words. I hate it when I feel sick and people respond with “you’ll be fine”. The nature of what I deal with doesn’t mean “fine” will ever be in the picture. This friend can send love or virtual hugs or plenty of words of wisdom.

When you’re in a place of chaos, whether it be emotional or physical, it’s important to remember that you can and will weather the storm. Depending on how much of my blog you’ve read, you will understand I’ve had so many storms, and I remain strong and intact.

So I weathered another storm of extreme physical illness, but I did emerge. I’m not 100%, nor will I ever be, but I’m back to a self that can create art, write, read, and enjoy living even if I can’t quite leave the house yet. Sometimes joy has to be “causeless” as my meditation teacher was drilling into my head and recently clicked.

I just wanted to share that we all have weathered many storms, whether it was a lifetime of trauma or just regular old irritating stuff that happens. The important part to remember is that our beautiful core remains intact no matter how far and broken it may seem.

The best advice I have been given in the recent past is “sit with the fact that you’re not broken and never have been”. It’s true. Abuse and developmental trauma might have destroyed me, or so I had thought, but they didn’t break me. I am a tree with a strong trunk and unwavering roots. So are you. Find it!

Love

Lizzie

P.S. I will be adding a blog where you can buy poster prints of my art that I am going to price as cheaply as possible. Stay tuned if anything has struck you!