Chronic Inflammatory Demylenating Polyneuropathy, well and my dogs

This is just an image I found off google, but it could be me right now. One of my many diagnoses is chronic inflammatory demylenating polyneuropathy, or CIDP. Despite being dependent on assistive devices that I don’t mind so much as they allow me to get around, I forgot about the excruciating pain of CIDP. This man is clutching his hand that looks red hot. My hands are only tingling and alternating between that and numb. My feet though, they feel like someone stuck them both in fire ant hills to halfway up calves. The immune globulin therapy I’ve been on a year next week has mostly gotten the nerve pain under control. Unless you have experienced nerve pain, it’s hard to describe. Sometimes I feel lightning bolts in my body. When I exercise, I pay the price of having intense buzzing in my legs that I have joked to a couple friends who were interested in my health experience that my legs have a more active social life than I do as it feels like that constant vibration when text messages come in.

I’ve been in a pretty rapid decline towards a pretty full blown relapse. I figured I could muscle through it and just forget it was happening until I couldn’t.

I have been doing a weekly treatment of hizentra or SubQIG, which means I stick 6 small, but extremely painful needles (for me) into my fat basically. Sometimes I do my inner thighs. Sometimes I do my stomach. It takes about 2 hours and feels like bees stinging me the whole time. I get huge welts that don’t really go away so much. They get smaller and less painful, but my body has New “scars” from treatment that is supposed to help. Last Sunday I just had to be still in my bed as it was all I could manage.

This is what happens to my stomach after infusion. This was the morning after. My flat stomach swells and it hurts! But I enjoy the freedom of doing my infusion at home, myself and have more ice packs than food in my freezer to manage the pain.

This is a brief description of the disease. My specialty pharmacy that delivers my weekly immune globulin supplies called today to schedule my delivery. Very important to be home as you definitely don’t want your thousands of dollars of medical supplies to be stolen off your porch! I wouldn’t be happy and sure the thief wouldn’t be so much either.

I said that I was having an increase in symptoms and could I get an increase and jokingly said, “or could you send an exterminator to get the fire ants out of my bed?” She gasped and said, “that’s what it feels like?” I just kind of casually said, “yeah” as my feet and calves felt unbearable. She immediately transferred me to a pharmacist.

I had no clue what a specialty pharmacy was. I didn’t even have a clue when I started getting my supplies from them except it must be the same as mail order pharmacy as I’m completely fine, right!? Not so much. Specialty pharmacies are designed to be built on a patient centered model for critically ill and people with complex diseases that need extremely expensive biologic medications or medication made from human tissue. My infusion is the healthy immune cells from thousands of plasma donors and all I can say is that it isn’t cheap, except my specialty pharmacy worked miracles for me.

Within 2 1/2 hours the pharmacist had called me back, had already contacted my doctor and said I would not be doing my at home infusion this Sunday. I’m headed to the infusion center for a week of IVIG and we were discussing the complexities of having to take the steroids that go with this that suppress the immune system in a time of COVID and lots of “well, umm, your immune system is going to be affected and right now, well, umm, it’s something to be concerned about in these times”. I reassured her I don’t really go anywhere except the store. I did go to an in person yoga class last night where we were all 10 feet apart in a basement of a building with a new ventilation system and my yoga teacher put on her mask to spray down the floor with who knows what to sanitize it. That class fed my soul. I was looking forward to next week. There won’t be a next week or week after that. I’m staying home with my immune suppressed self. A painful reminder of how it’s not great in good times. It could be deadly to me next week.

I’m managing the reality that next week I will feel terrible. I’m prepping food to distract from the pain. I’m figuring it out. I’m rearranging other appointments. I’m contemplating boarding my dogs as it’s hard to explain what a “loading” dose of IVIG does to me. My CIDP support group is full of people lamenting the dreaded loading dose, which means you get a LOT over multiple days meaning the fatigue becomes overwhelming. Your muscles ache. You get back pain. I always get the worst migraine for days. I shiver like I have a terrible flu. My last loading dose had me laying still for 9 days after and could only look at a screen for a minute without vomiting. I couldn’t turn my head without wanting to scream from the pain. My loading dose before that was 4 years ago and was in the hospital remembering how much it hurt, but they gave me a morphine pump and took care of my every need.

So that’s a little about my experience with just one of my diagnoses. I’m grateful to have a diagnoses for strange neurological symptoms that have intermittently been bothersome for years. I’m grateful my specialty pharmacy took it so seriously as my body is constantly in a state of “strange” and if you know me well enough, I’m the champion of not knowing what a medical emergency or urgency is. I just power through and get it done. Pain or more pain. What’s the difference? It’s just how it is and even as much as it flat out sucks, it’s given me an appreciation for life and a spirit to embrace new things and be a person who I enjoy being navigating health challenge after health challenge and in between I do some standing on my head and scaling trails in the mountains around my home being the best me taking the garbage life can throw at us while simultaneously feeling the miracles I’m granted, whether it’s a pharmacist who said she knows my story well or a couple dogs who come in for a serious snuggle as they know mom isn’t feeling well, or someone I don’t even know offering me rides as her daughter has lupus and knows the infusion drill well.

If you are managing critical, complex, or chronic illness(es), it’s a challenge. It isn’t a big ball of rosy beauty, but I can have hope that in a couple weeks I’ll be back at it even if I also cry about my relapse and the implications of it. I’m staying strongly rooted in the grief and pain and strongly rooted in my joy to stay centered in times that are definitely unprecedented for most of our lives and understanding it adds a complexity to life that has gone beyond anything I ever thought I would experience.

Thanks for letting me ramble as a distraction from the pain. Good thing I have plenty of art supplies, books, and the ability to ponder a lot to attempt to keep me entertained. Sometimes fire ants are overwhelming and just accept they are there and as I wrote to a friend, “if my body didn’t constantly hurt, how would I know I was alive?”

Love

Lizzie

And P.S., just so you know I’m real. This sucks!

It’s a Strange Reality, but It’s My Reality

After a rough bout of 24/7 sick doggie care, I was exhausted. I was pretty overwhelmed, exhausted, and managing a lot more than just the dog. When I was crying really hard to someone who suggests I “use my coping skills”, which I had done yoga that morning, had worked on an art project, drank a veggie smoothie, was going to food prep to stay on a food plan that literally allows me to keep moving, I was at my wits end. Please, hand me more coping skills as I’m about tapped out of ideas.

People will fast from eating certain foods to detox their bodies, so I went on a “people fast”. I communicate with one person regularly with several acquaintances that I just kind of set aside. As I did my people fast, I did begin to detox mentally and the phone rang—a lot, from people from afar where word had gotten out I was fine, but I had just been thrown slightly too much. People actually called and didn’t message to ask how I was as they wanted to know. They wanted to listen. They wanted to know how I keep going every when things are rough.

I know that being disabled and chronically ill makes life a little complex to understand. I know I thought that people who used wheelchairs couldn’t walk at all until it became me. I learned a term called “ambulatory wheelchair users” that means people who are disabled do a hybrid of walking and using their wheelchair. I use my forearm crutches and my wheelchair. I decided to take an online ballet barre class as ballet was once a huge part of my life. I’ve been bored with exercise while knowing I have to do it.

In fasting from people, a woman I had taken yoga from a few times reached out to spend time last night. I find her highly fascinating due to her very scientific day job, yet her very unique and powerful way of teaching yoga that never seem to mesh. We sat by the river well into the night. A couple people were walking by that she knew. She introduced me as “this is my friend Lizzie. She’s a miracle”. I was really honored and what a conversation we had! So many things I think about that she thinks about, especially where the collision of science meets the mysteries of the brain and how that creates a concept of spirituality was refreshing. The meaning of being highly sensitive and how it’s a gift.

When I parked, she yelled, “Lizzie over here”. She had been talking to a couple random guys for about 10 minutes before I got there. When I came up on my forearm crutches, the one guy said, “Lizzie, marry me”. It wasn’t creepy. He wasn’t on something, he was just being silly. My friend remarked that she didn’t get a marriage proposal. So as we sat by the river having great conversation and getting to meet some of her interesting random friends, the guy was riding his bike on the path by the river and said a couple times, “Lizzie, marry me”, so my friend and I laughed and remarked at how he remembered my name and perhaps it was some interesting foretelling. *Not accepting random marriage proposals as a disclaimer, but it was fun to laugh, have a new person reach out to me and be genuinely interested in what’s going on in my body with my health and interested in my opinion of why it happened initially.

As I could explain it to her, it made more sense to me that I have a strange reality, but to some, it’s not strange, it’s a miracle.

I embrace my bulky and athletic body I’ve hated my entire life with a spirit of gratitude as if I wasn’t naturally strong with a deep fighting spirit, I wouldn’t have had the muscle memory to “battement” with my non ballerina body today.

Love

Lizzie

Emotionally Cleaning House

Today I had to do some emotional house cleaning. Sometimes when you hold onto something, it can clutter your house and your head. I’m holding my son’s hiking boots he left under the dining room table just about a year ago when he kicked them off at his seat after a camping trip.

Those boots have been in the same spot for a year. I know they won’t fit. I know to some, they might just be a pair of hiking boots too small for a child that has grown. I’m proud that those hiking boots got a lot of miles and fun in the outdoors with his disabled mom. We have a mutual love for the outdoors.

My dining room has become a cluttered mess over the past year to cover up those boots. I didn’t want to move them or see them as somehow keeping them there would make those same small feet return with excitement to put them on to go outside.

So at the recommendation of a friend, these boots will become flower pots to sit with my son and metaphorically watch him grow for now.

Emotional house cleaning doesn’t mean you remove someone special from your heart. It simply means you make space for new growth in whatever capacity that goes, and I’m certainly blessed that much has come and have things to be hopeful about for the future. Creating a future also means grieving what isn’t there.

Sad is ok. It’s ok to wail and sob over something that hurts. It’s not depression. It’s real feelings that are just as valid as any other.

A psychologist once told me to “feel all your feelings”, which has probably been the most healing advice I ever embraced for someone who couldn’t feel much for so long. Am I ok? Absolutely. Am I smiley? Not so much today, but I am here, tolerating what has happened, appreciating that pain represented by a little boys boots will grow into something beautiful.

Love

Lizzie

When a Strong Woman Asks For Help

It started off as an exciting week making connections with possible future work contacts for new opportunities that are so in line with who I genuinely am. I even got to go hiking with my former gynecologist and generally life was feeling manageable within its usual cluster of symptoms from multiple diagnoses and chronic pain that a specialist FINALLY looked at my spine MRIs validating how real my pain is as well as troubling that my spine looks as it does.

Then my dog got sick. His eye was swollen and shut when I got home Wednesday. At the recommendation of a very knowledgeable dog trainer contact, I put warm compresses on it throughout the night, so night one of not sleeping.

I saw very early on Thursday morning, my dog was now in extreme pain and a message to my veterinarian friend from high school up in Oregon said to take him immediately as eye problems can go bad quickly. I had called 7 vets the day before and none had openings for months.

So we slugged off to the emergency vet Thursday morning who was glad I got him in. He has a very deep corneal ulcer in his eye. He’s in danger of having his eye implode, explode, I don’t know. It was a blur as I handed my debit card over to pay the huge bill fully knowing veterinary care is expensive, but it’s not really as I’ve learned from my veterinarian friend in Oregon that the charge is barely over what they do to cover their expenses. If I had gone to the emergency room as a human with an eye emergency in the US, even with insurance, I would have paid thousands and not received the loving kindness my dog and I both got.

A sack full of pills and a warning to get the medicine in his eye every 4-5 hours. It was VERY important. Oh, and come back tomorrow to see how it’s progressing as early as possible. Night 2 of no sleep.

I didn’t get him early. Instead I read my lymph node biopsy report and looked at my online portal at my blood test results in disbelief. How is this happening to my body when I’m working to be SO healthy? How and why and what more could I possibly be doing… Nothing is what my doctors tell me. One in particular is very empathetic to my trying so hard and can tell she genuinely feels for me within the proper boundaries of a medical relationship.

So off we go back to emergency vet as I feel terrible for the other dog as he yelps and cries so loudly as the two have never been separated. He does it the entire time as I can hear him when I pull into the garage still crying for his sick brother.

The emergency veterinarian staff is wonderful. I guess there’s something about seeing my now cone head dog sitting regally on my lap as I push myself into the vet in my sparkly pink wheelchair. I trained him. So I think we probably both got some much needed love and smiles that I can’t see behind masked faces, but I could feel them.

So I know I’m going to go on night 3 of no sleep and will be a string of at least a week with the medication regimen and instructions to come back in 3 days.

I’m managing, but I also recognize when I need support. So I reach out to get emotional support as I realize I’m overwhelmed with my sick dog and my new test results coming in the past couple weeks, like beyond over my head. No one talks anymore. So I send out my plea in a message. I get “you’ll be fine in a week”.

What she doesn’t understand is I’m “fine” now. Several years ago, this would have brought me to my knees. I couldn’t have handled any of it. I would have panicked. I’m not panicking. I’m handling it. I’m taking care of my dog. I’m checking and rechecking my bank account to make sure this will work and what I can put off paying or not. I’m handling it. I’m already fine.

I’m fine until a friend says I’ll be “fine” in a week. I’m fine now, I just need support. I prefaced it with “i know rare diseases are hard to understand”… So I got nothing. I’m not in the mood to reach out anymore.

As is the beauty of neuro immune diseases, the stress of taking care of my sick dog and lack of sleep and my reaching out makes my body stop. My body has this torturous way of telling me I have to stop by literally making me stop.

Early this morning, I realize my legs are completely paralyzed. My right hand is useless. My left one works enough to hold my water bottle, except I dropped it with 24 ounces of water all over me, twice. Oh well.

My dog who usually comforts me needs me, so I let his plastic cone head poke me in all sorts of uncomfortable ways as if I don’t, he gets super agitated, trying to rip it off and attack his furry brother.

So I write this post with my left hand knowing with rest, my body will go back to its “normal abnormal”, which seems to change constantly as the new diagnoses pour in baffling doctors who can’t figure out why.

I have my dear friend in Florida who we message several times a day. She knows. She sees me. I have several wonderful people in my life in different capacities, but I’m just too tired and weary to reach out again.

I scribbled out a brief poem with my left hand on my exercise of reaching out and the invisibility of being a strong woman inflicted with several rare diseases that don’t even make sense to me. I hope to turn it into a visual piece of art someday.

As I said, my dear friend in Florida has helped me through. Others have made offers to help in other ways. Sometimes practicality says I just share my pillow with my sick dog in hopes we will both get enough rest to be climbing literal mountains soon.

For today, my legs and hands say “no thank you, maybe another day”. And I’m glad I’m strong. And I’m glad I know good people. And I’m glad I know who not to reach out to now. And I’m glad my left hand works enough to write this. And I’m glad I take incredible care of myself as even though a sick dog and body that quit today aren’t my ideal, I’m still breathing and can’t say a few years ago I could have made it through any of this. I’m not happy. This isn’t positive, but it’s still growth.

Love

Lizzie

Allowing Others to Know…

Never Would Have Imagined Posting This Picture

I’ve been having a hard time lately as I realize I don’t let people into my world as a physically disabled person. My outside body tends to work like a perfectly tuned orchestra for being physically disabled. The inner workings of my body are more like the makings of a terrible horror movie.

Today I was supposed to help sort clothes and food for a volunteer project. I could do it seated from my wheelchair, but I knew the twisting and bending would be more than my incredibly painful back and neck could handle. I’m working closely with pain management, where I think I ended up with an angel on my case, but despite it being an option, I’m not going down the 24/7 opiate route as I enjoy having a clear mind and just enough energy to get by more than constant pain relief. It’s a no brainer for me.

I said I would never post a picture like this as I’m a prude by nature. I was doing just a home practice of yoga, so nothing official. No one was watching. I just attempt to do a little iyengar yoga daily, whether it’s a couple stretches while the dogs are eating, a full length class, or my home practice, which was 26 minutes today.

I was lazy and kept my pj bottoms on and just put on my sports bra. I take pictures for myself. They are for seeing where I can improve alignment of my very degenerated spine to get pain relief. It was interesting as when I did this pose today, I felt a release in my spine and neck. It’s not a back cracking, snapping type release, it was like I could finally feel space between my vertebrae. If you’ve ever jammed a joint, think of how amazing it feels when it loosens. I have a fusion in my thoracic spine, nearly every disc is out of place in one way or another, I’m having the beginning of a scoliosis S curve in my lower spine.

When I looked at the picture, I saw my spine alignment was nearly perfect. It’s really scary to be 90 degrees to the floor. It’s also freeing and exciting. I let my spine and neck dangle for the longest time I ever have. It felt so good. I wanted to stay forever. My pain extends from other diagnoses besides the degenerated discs. So a few moments of loose, dangling, freedom is a welcome distraction from my whacked out body.

Iyengar yoga has been scientifically studied for the relief of chronic lower back pain. It’s even been written up in Harvard medical journals. I just put it out there if you suffer from chronic pain or autoimmune diseases, iyengar yoga has been amazing for me. It hasn’t cured me, but it’s part of a path of taking my health into as much control as possible with some phenomenal results. I will put the disclaimer that many with chronic pain or illnesses aren’t doing this pose. It is much more gentle. I do it because I was blessed with a naturally strong body that thrives on using my upper body strength when my legs are often useless.

Disability Art

Sure, it’s amazing what I can do with my body with my yoga and ability to hike with my specially designed forearm crutches made for disabled people to enjoy the outdoors, but I keep emphasizing what I can do understanding I have my own internal disability discrimination. My mantra has been “yes I’m disabled, but I don’t feel disabled”. It denies who I am. It doesn’t allow people around me to understand the disabled experience, my disabled experience.

I can’t go up a flight of stairs. I’m supposed to travel in October that I doubt will happen now. A couple ladies offered to share their space with me for a couple nights of the trip. I felt ashamed in asking if it was up a flight of stairs as I would appear ungrateful or some strange idea I have in my head as I knew I would have to say no. I kept turning it over in my head how I could do a flight of stairs regularly for 3 days. It’s not going to happen. Well, it turns out the space will be fine if it’s even safe to go.

It’s an interesting thing when you come to acceptance about things in your life. It feels free. My acceptance the past couple weeks is that I’m disabled and my ableist ideas that I were damaging to myself and to others perceptions as physical disability doesn’t always look like you can’t move. The handful of physically disabled people I have met in person move in incredible ways. It’s not because they are disabled. It’s because I admire people who exercise or try new things given challenges.

So this piece of art is far from complete. I realized I need to honor my disability in ways that are meaningful to me. It has to do with wearing the “weight of the world on your shoulders” and how that looks for me realizing I will never walk unassisted. It’s beyond just disability, feel a lot of burdens in my world and the world as it is. This piece of art will also be how I work to feel lighter.

If I honor my truth, others will honor it too. I can stop explaining what my needs are and emphasize what is hard for me as well as celebrate what is easier for me since I went down a path over 2 years ago to take the best care of me possible. It gives me personal self respect that I hope trickles down to others through understanding.

I like to smile. I want to emphasize what a miracle my body is. I laugh through my pain. I spew positivity when my back is spewing venom at me for not taking care of it while I ignore the reality that I can’t be all things at all times.

I’m strangely grateful for what’s happened to me medically. It gave me an excuse to be and examine a lot about my life I never would have if I hadn’t been thrown into such a medical debacle. It’s not an overly positive grateful. It’s more of a noticing how this has been an integral part of big personal change.

As I reviewed some lab results that came in on my patient portal last week, my stomach, heart, brain, just about everything sank into a pit. Medical debacles have also allowed me to sink into some healthy grief as well as examine what it means to have genuine faith that I am doing the best I can and whatever or whoever looks out for me is doing a really good job. (I don’t so much like to get into spiritual leanings here as it can be very triggering for trauma survivors, so I’m not skirting the issue. I’m simply being cognizant to be an open space for now, and heck, I’m not even sure myself?)

So as much as I have embraced the awful and good parts of how trauma has impacted my life, I’m now working to fully wrap my own mind around the idea that I’m disabled and throwing out the concept that disabled people can’t do anything. I was somehow special. It’s been a time of examining my privilege. I was hiding under a guise of ableist privilege when it completely puts down every disabled person as we are as diverse in ability as able bodied people.

As much as I hate labels. I’m here to say, yes I’m disabled. It’s hard. It’s also nothing short of a blessing and couldn’t imagine life any other way. I don’t even wish for it, (although I curse my pain plenty 😊).

Love

Lizzie

I Think About People-A Lot

Feeling Peaceful and Serene

As I’ve come more and more into myself with medical diagnoses being more concrete and learning to work with that, my mind turns back to trauma.

I’m not thinking so much about my own trauma, but how it is a life stealer. I don’t mean in the typical people committing suicide way, I am thinking more in terms of how it steals people’s ability to be peaceful.

I myself was miserable and felt like no way out of trauma for years. I knuckled through a lot of the ugliness alone. I stopped talking about it in therapy as even though it was ruining my life, it was too hard to face.

I read an article today about Romanian children who grew up in orphanages who got basically zero interaction or nurturing. Once the final communist dictator fell, a lot of American families rushed to adopt these children with disastrous results.

I found myself immersed in the article as it was talking about neural development up to 24 months and what happens if you don’t learn to trust a caregiver to give you your needs. My mom wasn’t interested in me and had a lifetime of her not only not having an attachment to me, she worked diligently to destroy me.

A lot of psychologists rushed in to study the attachment patterns of these children as with legitimate psychological research currently, you are not supposed to harm someone. You obviously can’t purposefully deprive a baby or small child what they need for science.

The most interesting thing that came out of these studies and watching the Romanian children grow into adults for me, is that asking for help when you are distressed is a learned behavior.

Maybe it doesn’t blow you away, but it did for me. For many years, I couldn’t ask for help when distressed. In fact, I retreated to myself by myself. I never learned as a traumatized child that when I hurt, you were supposed to go to a caregiver to get support. If I skinned my knee, I knew it was my fault for falling. I certainly wasn’t going to ask for a bandaid as a little girl.

I know a lot of people in trauma recovery. They say they refuse to ask for help when they are in huge distress. I had someone once yell at me when she sent a text saying she was in huge emotional upheaval when I decided to call. She answered the phone in this half weary/ half angry tone of “I told you I don’t want to talk about it!!!”, so the conversation ended.

I think about people in trauma recovery or just have been traumatized and the misery they live in, the life stealing. I think if one could find a way to ask for help, it would make it better and easier to recover.

When I first started asking for help when I was distressed, which was medically as it felt more legitimate to be distressed for medical reasons versus emotional ones, it felt foreign. When people did help, I wanted to retract my request as it almost felt like I was going to be in trouble.

As asking for help has become more and more common for me, I will admit, it still feels strange. I do it as we all need help, but it can still feel off. Now I know it’s a behavior I’ve had to learn. With any new skill, you won’t master it the first time around or maybe for years, but I practice as it’s important to me.

As I think about how trauma has played out in the lives of so many people I know or are from my past, I want to share with them a path out of misery is learning the new behavior of asking for help.

Free yourself as I know when I ask for help and help comes in whatever way that might be, I feel lighter, less alone, loved, awkward, eased, guilty, grateful… Essentially though, help for me comes in ways of needing a lightbulb changed to meaningful conversation about the complexities I might be managing at that moment. Help brings relief that whatever my problem happens to be, it will be fixed, heard, or validated.

The more you allow others to help you, the more you will be freed to help others in healthy ways.

Getting help and comfort in a distressing situation is a LEARNED behavior. Whether you are lucky to have learned it at the appropriate developmental stage prior to 2 years old, or in your 40s, 60s, or whatever stage in life you are at, I hope you learn it.

As I said, I think about people—a lot. I have to think of them as they haven’t learned to ask for help. As sad as it makes my heart, I can’t help someone who hasn’t learned to ask.

Love

Lizzie

Being an Observer and Disabled Realities

Yes, I AM disabled

I’m in a period of life of doing a lot of observing, thinking, reflecting, and with that being the case, I’ve come to a lot of difficult realities.

This is not to detract from the black lives matter movement at all that is gaining steam in the western world and definitely stand behind that as a black friend put it something like “our lives are on fire. We have to call 9-1-1”. I agree. I am not interested in all lives matter. I’m not even so interested in disability access until I get it in my face.

In my observing and reflecting lately, I’ve looked a lot at religion, schools of philosophy, and have probably been dabbling in too many different things to come to any conclusions. I find whether it’s the yoga sutras, the Muslim faith, stoicism, Christianity…, it all comes down to “love thy neighbor as thy self”, which is just the Christian way of saying it.

I love loving people. I appreciate and respect friends in my life who have wholeheartedly thrown themselves into one religion, philosophical school, not because of what they choose, but I admire their passion. I love their love. I get jealous of how they can throw themselves into it with both feet, arms, torso, heart, when my life circumstances have put me into a place where I can only dabble.

Occasionally I was going to a Christian church prior to the pandemic. Due to my trauma, Christianity was a really hard pill to swallow. I’ve come to realize it’s not Christianity that makes things difficult, it’s hypocrisy. It’s hiding behind anything that is based in love to give you an excuse to be an unkind, unthinking, or lead you to feel virtuous when your actions are opposite. I’ve seen it in Christianity. I’ve seen it in the yoga community. I’ve seen it among Buddhists. I have seen it in humanity.

Last night this church had a social distancing service in the park. Even if I can’t completely wrap my mind around any single thing spiritually as that’s just where I’m at, I appreciate the positive and loving message that this particular group of people offer. Who couldn’t use some uplifting in uncertain times or general life?

We broke into small groups. One of the things we were asked to do was have people volunteer to pray for their partner organizations. One of the partner organizations was sitting there, in my face staring at me in my disability and it hurt—a lot.

I’ll tell you why. This organization did a couple wonderful things for me that I was hugely appreciative of and hoped it to be slice of my community. As my physical disabilities advanced and access wasn’t as simple as running up a flight of stairs, the door was closed to me. I had a conversation with one of the higher ups several months ago saying how much I loved going to events, but I can’t go up a flight of stairs. The first response I got was, “those stairs are steep and can be hard for me”. No. Don’t you see me sitting across from you in my wheelchair. A flight of stairs aren’t just hard, they are impossible.

I tried to use my kindest as well as assertive self to request disability inclusion with this particular group. I already knew they couldn’t help me in regards to anything with my chronic illnesses. I was fine. I asked for community. I was offered community until I couldn’t access community as many events are upstairs or I was told at the time that they were roller skating and skiing, so that wasn’t going to work. I kindly said what I could do, which were activities that were done in the past.

The monthly calendar wasn’t sent to me anymore. I made a request about something that would be coming up that I could do. I received a simple text basically saying that they “hope you feel better”. In times of COVID, I assumed they shut down, but sitting across from me was a woman I didn’t know from this organization bestowing the virtues of still being up and functioning without anyone getting sick and still helping women.

I smiled. What does one do? No one stood up for me in regards to how my disability affected me with this organization. I wanted to pick up my forearm crutches, dig a hole in the ground, lay in it and put the dirt on top of me. My very visible disability is an invisible problem.

I admit, I’m not the stereotypical disabled person that able bodied people think of. There’s a lot of stigma that disabled people live miserable lives sitting in our houses rotting away. I luckily have met paralympions, my teammates on my wheelchair basketball team are among some of the most active people I know. People with physical disabilities do incredible things not because they are disabled, but because able bodied people do incredible things too.

One thing that is universal to physically disabled people I know at least is that if faced with a flight of stairs, it’s going to be a major challenge, if not impossible.

So as they prayed for this wonderful organization that has been able to stay open and operational continuing to help women, I realized I’m not THAT woman. I’m physically disabled that gives me a lesser status to some. It hurts. I encounter disability discrimination regularly. In a world of so many hurts, it’s one I don’t grieve often as I tend to celebrate what I can do versus what I can’t. I’m grieving at 2:30 in the morning as I had a tangible experience again of what I can’t do. Where I don’t belong.

So I listened to how grateful everyone was that they could stay open and the wonderful work they do. I agree, but not if a flight of stairs is your Mt Everest.

So as soon as I possibly could, I separated myself from those people as I have certainly learned you can’t find water in an empty well. It’s futile, pointless, and frustrating. I don’t go to empty wells for sustenance anymore. I don’t even try.

Sometimes I don’t know how to share my story. Yesterday wasn’t the time. That organization can help the women who can climb a flight of stairs. I can turn and gimp, wheel, crawl away from the empty well with anger and sadness to a well that is full when I’m really thirsty. So that’s what I did.

Hypocrisy, discrimination, exclusion shows up in a lot of places. I can only hope that there is genuine and positive change in the black lives matter movement. I’m doing what I can. As long as that needs to be huge, and these are discussions I personally back and want to go well whatever the mechanism has to be seen to be heard with a hope that someday there will be a trickle down effect that people who care about me might think about how my disability affects daily living. Daily grief. How a flight of stairs is a representation of rejection and sadness.

I’m not actually in a heavy mood, but it’s sometimes hard to sit in a group of people affirming an organization when I had to adapt just to go to that service alone as my legs were extremely exhausted yesterday and using my forearm crutches wasn’t ideal when I needed my wheelchair, but it’s not about disability right now. Just something to think about that I never had to until it became me. That’s privilege right there. You don’t think about it until it is you.

Love

Lizzie

Chronic Illness Lingo

Weekly Infusion of SCIg

It’s a strange thing what we each experience that feels like a normal experience that must be universal. This is my attempt at some chronic illness humor as I work at being much lighter in spirit while still honoring tough realities. This is light today.

I recently had a conversation with a lady who is in her 50s. She was talking about having her first ever EKG a few weeks ago. I was like, wait what? Your first EKG in your 50s? I’ve probably had at least 5 this year and hundreds in my life at 44. I’m not normal.

Someone posted on Facebook making fun of “gf”. In my world “gf” means gluten free as I have celiac disease that is an autoimmune disease that attacks the intestine and they are finding causes neurological symptoms as well as lots more if you eat any gluten. I can’t even eat something if you take a bit of your gluten food and stick your fork in my gluten free food as it’s been contaminated and enough for me to get sick. I even made fun of people for being gluten free as a fad diet years ago until it became a huge part of my health. So I was highly offended that someone I know was so publicly make fun of “gf”. I asked for clarification. “Lizzie, gf means ‘girlfriend’”. 🤦‍♀️ I’m not normal.

All the rage is talking about IG. I’m super excited as I’m on IG therapy or immunoglobulin therapy so I finally don’t feel so alone. I mean EVERYONE references IG. Good thing I figured out “IG” means Instagram and not everyone I know understands my IG, although I realized why some people have been so dismissive when I say I’m on IG, or immunoglobulin that I don’t specify that part, which is a very big deal and get a look of, “who cares”. They are probably wondering why I’m so serious about being on social media or Instagram in their minds. I’m not normal.

So it’s kind of silly to me what my normal is that is not a universal experience at all. I’ve been working to listen to what other people’s unique experiences are. I like to know what is unique in their lives and what they are looking forward to in tumultuous times as Hope lingers even when life is strange.

I did do something normal yesterday that is probably a universal experience of doing something dumb. I was trying to do laundry yesterday and couldn’t find my laundry detergent anywhere. My washing machine is in my kitchen. I gave up until I went to get some water. I put my laundry detergent in my refrigerator 🙄.

What’s something unique to your life that might be a shared experience but very limited? What did you do that was dumb and made you laugh at yourself?

Love

Lizzie

The Bravest Acts are Never Seen

Typical Morning

People see me doing my yoga, hiking, taking good care of myself, but what my most courageous acts I do are ones that aren’t seen. When I wake up in the morning, my body HURTS! I have a severely degenerated spine, osteoarthritis, and despite looking healthy with my clothes on, my ribs and hips are sticking out from rapid weight loss that is being investigated. Laying on a bony, skinny hip hurts too.

I don’t say any of that for sympathy or people to feel sorry for me. I don’t even write it for more understanding. I put it out there that my bravest act I do daily is make the choice to get up.

Whether you are managing physical pain, emotional pain, or both, the choice to get up is a huge one. As someone who supports many in trauma recovery, when asked for advice on how best to deal, I will say to just get up.

Some days I get up to go on grand adventures. A lot of days, I can only handle getting up to eat healthy and do a few dishes.

If you have the physical ability to get up, get up. Take a breath and get going even just a few steps around your living space.

The other brave thing I do is things I hate. Sunday late afternoon is the day I give myself a self infusion of hizentra or SCIG. It’s really painful. It takes a long time to do. I feel like crap for a day or two after, but I also recognize it’s a gift.

Preparing for My Infusion with a lot of Feelings

Last Sunday I sobbed while I went through the process of preparing. I wasn’t in the mood to poke myself with several needles and feel burning going into my body for just over 2 hours. I also sobbed as I had a great day with some wonderful people and as I go into year 3 of this blog that I was sure to end, except you really can’t, I reflected on how different things are for me. Medical validation. New friends. Self confidence. What happened to me?

Each day is not easy. I have some incredibly complex situations I’m managing, but I can recognize my bravery and courage to just make the choice to get up.

Love

Lizzie

You Got Lucky, or Maybe I Did!

Meditation for an unbearable week physically

I guess when they say what stays on the internet never goes way, they are correct! After much bantering with WordPress, I can’t really export my content. Well I did, except all my images were just code language and the content was disorganized. A basic mess. My option to keep my content was to switch to the free version. In a couple days, it will no longer be in pretty colors but I can post occasionally as well as update where to find my new writing as it comes. I don’t even know what it will look like honestly!

No doubt it has been a miserable couple weeks for me physically. I’m proud I have become strong in my meditation skills. I don’t do meditation apps or listen to anything guiding me. I can clear my mind to a state of utter nothingness that allows me to disconnect from the physical storm of pain I had for several days. It sounds like nothing, but it’s a state of fullness that one can only understand if you can do it. I guess having a dog sit on half your face helps too. This is my dog that likes to “help” when he knows his mom is very bad off. He does a good job. Considering just a handful of years ago, if I was told there was going to be meditation, I would have gone running as I could never clear my anxious brain. That causes anxiety! No more.

Crazy as it may seem, being upside down helped relieve my migraine a bit. My head is actually barely touching the floor, so it kind of suspends as a backwards blood flow. The pose is held by pressing the forearms firmly into the floor while interlacing the fingers to make a cradle for the head. You push out of your shoulders and voila! I’m in an almost headstand. Being upside down has a way of turning you right side up.

Iyengar Yoga Headstand

A huge thank you to those that reached out personally to know my future endeavors. I’m hoping it’s bright as I continue to manage a multitude of chronic illnesses and wait for a call from a surgeon to get something pretty big done. I don’t feel afraid. I feel equipped no matter what it looks like as I grow stronger each day through exercise, healthy eating, and lots of self examination.

Love

Lizzie