I’m Smiley Again

This was not a picture from today. It’s actually a part of a series of photos I’m taking that explore the intersections of being feminine, ladylike, strong, disabled, and all the irony that goes along with it.

It has been a BAD week. My mind isn’t great at telling me I’m very stressed as I generally feel calm. My body loves to tell me though. With autoimmune diseases it’s very important to keep stress low. General life stress sometimes can’t be avoided.

My gastroparesis flared very badly this week. Gastroparesis is a chronic illness where your stomach becomes paralyzed and can’t move food through, so it becomes stuck. My old neurologist kind of really simply put it that as my nerves are demylenating (fancy word for they are stopping working causing paralysis and pain), the ones that control my inside organs can too. My gastroparesis is most likely caused from neurological diseases.

Definitely not a glamour shot. I’m about authenticity though, and my whole life is worthy of a picture. I ate a tiny piece of fruit no different than my usual, but my stomach instantly swelled and the pain is stabbing and searing. This picture is actually when it had improved. Gastroparesis is normally controlled through diet, medication, or at more extreme levels, a stomach pace maker is implanted or a permanent feeding tube into the intestine. I’ve been lucky to manage mine through keeping stress at bay, noticing when I have to switch what I eat, and my ever annoying yoga 😉 that I love that I have poses to aid digestion.

I thought I was going to have to go to the ER as I couldn’t have a sip of water without swelling more. I remembered I had an old prescription I used to take before. I found it and after nearly a day and 4 doses, I felt better. I can’t take the meds regularly as it has a black label warning to cause movement disorders, which I’m still managing the one it caused for me.

I know gastroparesis can be brought on by stress. When my coping skills are taken and all I can do is lay here in agonizing pain not even able to do my self infusion for my other chronic illness, I ALWAYS go into what I call my “cess pool of self hate”.

The cess pool is when all those negative messages about me from childhood and negativity I’ve encountered as an adult start swimming in my brain as truth instead of as lies I’ve been told.

I’m lucky to have an incredible friend who messages me through these times reminding me I’m brave and am enduring the impossible all while wearing a million other hats taking incredible care of myself.

In that cess pool, I can kind of hear it, but worthless, failure, loser, stupid, ugly, liar, seems to overwhelm me instead. My friend is gentle and kind and brave herself to be on her journey and stay with me through mine.

So today, I finally felt a little better and could really embrace her words of the truth of who I am. As the day went on relatively mundane without any surprises or gut punching news, literally or figuratively, I took joy in the simple. I appreciated that it was boring. I didn’t push myself, although I still accomplished things, plenty of things, but nothing felt over the top. I didn’t push myself.

I didn’t stay in that cess pool of self hate long. It was maybe 48 hours that coincided with some pretty awful physical pain and would believe anyone’s defenses go away when you are in physical agony.

So I didn’t worry that nearly a week without exercise made some of my muscles turn to flab. I didn’t stress that my “to do” list still sits with plenty to do.

I did notice that I end my day smiley again. I have zero guilt I didn’t get it all done. I get ready to go back to sleep holding onto my friends written words about my worth, love, and value as the truth. Getting out of the cess pool so quickly when you have been trained to stay there is wonderful as complex PTSD isn’t an easy thing to manage. Throw some chronic illnesses on top of it, and I know that simply loving myself is a major accomplishment. Giving myself a break is the peak of the highest mountain.

And of course I did a little yoga stretching today. Only a little, maybe 15 minutes tops. This pose is called “happy baby”. You rock side to side while stretching each leg to your capability in your hand alternating. And I felt free doing it.

Love

Lizzie

Life is Certainly Real and Those that See It

Yesterday I climbed a big hill. I wasn’t totally in the mood, but I signed up for the GBS/CIDP foundation raise well challenge. It’s 30 days of August of health and wellness challenges to raise money to research and maybe find a cure for Guillaine-Barre Syndrome, which is acute and the chronic form that I have, chronic inflammatory demylenating polyneuropathy. I didn’t sign up for the challenge just for me, but a friend I’ve known for 25 years came down with GBS a few months ago and is having a rough time healing. It is potentially devastating with people in my support groups asking on behalf of a family member if IVIG got anyone off a ventilator or did it allow them to get their trach removed? A trach is a pipe implanted directly into the windpipe so people can breathe who can’t on their own.

I have a couple people in my life who really see me even though I don’t ever technically see them as they live on the other side of the country. I had to give myself a monthly auto injector today. I’m the queen of managing the pain of needles. I was lucky to message a friend how I was freaking out about the auto injector as it hurts, and I’ve become really sensitive to needles. She got me through it.

Maybe it was my failed IVIG infusion got to me when vein number 6 blew, and I finally cried. Maybe it’s the weekly B12 injections, the monthly auto injector for migraines, the 6 needles a week for my self Ig infusion that I was looking forward to skipping this week as I was supposed to do IVIG all last week. Now I’m doing it as soon as the specialty pharmacy overnights it tomorrow for Tuesday morning. I couldn’t finish my IVIG. My veins aren’t having it.

As I sat and messaged my friend about it just getting to be too many needles and how I’m overwhelmed, she validated every bit of it. It IS overwhelming and nice to have a friend who sees that for every hill I climb or time I stand on my hands, she knows I’m managing the impossible medically with integrity, sanity, and incredible strength.

Another friend messaged as he’s managing the 1 year anniversary of who he calls his “soul mates” suicide. I offered to listen to him as he’s hurting. The first bit of conversation was him saying “I know you have been powering through. And you got a job? I’m so impressed as I know what you go through. How are you?” I told him I was honestly just glad he thought of me and wanted to focus on his pain.

So as about 5 pm hit, I had done everything to manage my arthritis in my neck. I stretched. I took an Epsom salt bath. I breathed through the pain. I don’t want to take medication. I rarely take pain medication and never during the day. I told my friend I had to go to bed. The pain was so intense I had to meditate and put my head on heat to try to escape it for awhile. She was lovingly concerned.

Believe it or not, nearly 3 hours later, and I’m feeling better. This is what feeling better looks like sometimes. I’ll take it.

I don’t need sympathy or pity. I just appreciate how people who don’t see me can see me so well.

I’m glad I scale hills and stand on my head. I also know for every hill I climb, I hurt. The pain never stops, but I don’t let it stop me. I have to take breaks. I have to rest. I have to poke myself with lots of needles, but wow is it amazing to have people see the unhealthy part of a me that is very healthy for my situation.

I have dubbed myself a “pathological giver”, meaning I gave to others to the detriment of myself. I won’t say I’m in a taking mode right now, it’s more of a receiving mode. I’m still giving and kind, I’m just being more skimpy about it as I allow others to genuinely support me.

I’m figuring out a new world that includes the world of rapidly upcoming employment in what I can only call an absolute dream job and as I navigate the complexities of how that fits in my world, I’m just going to lay here and receive. Well, I’ll give a little too, especially to myself.

Love

Lizzie

On Dogs, not just the usual

Yeah yeah yeah, we all know the power of a pet if it’s your thing. They can lower your heart rate by petting them, boost positive brain endorphins, and all that scientific garbage we already know if we genuinely love and share our home with an animal.

This week was tough. I did an excellent food prep for my week of infusions of immune globulin with IV steroids or IVIG for my chronic inflammatory demylenating polyneuropathy or CIDP. It’s been awhile since I had IV steroids and remembered why I hate them. Most people get hyped up, have lots of insomnia, and feel crazy rage. I don’t get that. I get SICK!

So my food prep was useless as I ended up eating applesauce and rice while still being starved but anything else, my body rejected. The actual IVIG caused me migraines that I took medication for that makes me so loopy I literally can’t figure out what direction is up. It’s so strong, you can only take 8 pills in a month.

I left day 3 of my infusions with horrible body aches, collapsed in my bed and resenting my dogs a bit as 2 hours later I was getting nudged for doggie dinner. “Foolish dogs. Can’t you see I feel awful, I don’t know what direction is what, and I skipped plenty of meals”. I didn’t say any of it. I didn’t even give them a dirty look. I just wheeled myself to the kitchen, got their food, let them out, we all went back to bed, and then one laid in front of me and the other behind my back as I have to prop myself up with tons of pillows to sleep on my side or I have no chance of conquering the pain to sleep. It’s a tiring process. That night, my dogs just knew I was too tired to do the complicated pillow arrangements and getting the heating pad on my back and the ice on my hip growing a bone spur and arthritic, so they just did it for me.

Day 4 of my infusion and I arrive to lots of IV pokes. On try number 6, I started to tear up. I’m the incredible champion of pain usually. Lately the physical pain has been too much. Too many needles in my life. Too many doctors. Too many diagnoses. Just too much.

So my extremely loving nurse sent me home and said to her, “I know this hurts you more than I” as nurses are so loving and real and mine is particularly special as she discusses the complexities of backpacking with me and we talk aromatherapy and if she wasn’t my nurse, I’d want her as a friend.

So I’m home and frustrated and have to leave my phone on as the specialty pharmacy is going to call with instructions on my next plan. I want to tune the world out as blowing all those veins wasn’t the hardest part. The hardest part was not finishing my infusion and the implications of it.

I have a serious disease, one of many that I kid myself into thinking it’s not real. In my Facebook support group for CIDP, a woman posted a picture of the paramedics carrying her in a sling to her second floor flat lamenting she had hoped the IVIG would get her moving again. She is completely unable to move, but her gratitude is that she is off the ventilator that she posted later. It hit me hard.

My dogs have their little honing devices. The black one is my physical pain sensor and will lay to give me heat where he knows my body hurts. My little white guy is my emotional need sensor. He knows if my heart is hurting or feeling fear, he will put his paw on my heart. I have pictures!

Friday morning I woke up feeling absolutely awful. My physical pain was through the roof. I could barely move. And the fatigue.. ugh, it was bone crushing. I knew part was recovering from the infusion, even if it was shortened, the disappointment, and the fact I ate garbage the day before. I don’t eat a strict anti inflammatory diet that is mostly plant based to be a quack health nut, I do it to keep moving. I do it to manage my pain. I do it to stay alive. I have specialists who will say it’s the food that keeps me going beyond anything else I do or treatment I receive.

A big fat diversion from my point as I could go on and on about food, but it’s for another time. Needless to say, my day basically sucked.

Then I looked at my dogs. The simplicity of their joy reminded me that it’s not huge victories that make life worthwhile. They remind me that it’s being together, good food, snuggles, love no matter that our little family is a mishmash of whatever, and their mornings that they enjoy the sunrise together as it’s the start of a new day and a dog probably predicts it will all be ok. No worries. No regrets.

Simplicity of life is what my dogs remind me of each day that is an added bonus to the oxytocin your brain releases when you give a belly rub. Who cares about the love hormone when life lessons are so much more profound?

Love

Lizzie and my two little furry philosophy teachers

She’s Tired, but She’s So Brave

I had my first day of my loading dose of IVIG or immune globulin therapy for my CIDP or chronic inflammatory demylenating polyneuropathy. I’ve been on home infusions for several weeks, but it wasn’t holding my symptoms.

Last week, I was told to write a letter to my younger self as I’ve been incredibly hard on myself lately, demanding perfection for everything I do. I know perfection is a myth.

I was told I didn’t have to write the actual letter, but to think about how if I would treat my small self. For me, I realize I’m demanding perfection of her, who is me who has had a very rough go in life with childhood trauma and having multiple chronic illnesses now.

I take pictures of myself constantly whether it’s a “pretty picture” or reality. Today was reality.

I’ve been rushing around preparing for my infusion week, not getting everything done, and feeling bad about it. I was up early this morning so I did my iyengar yoga practice and packed myself my usual healthy lunch.

I took this picture of myself at the infusion center. Today I can look into my eyes in the picture and see that a lifetime of fighting, making it, fighting more, figuring out how to do and be better combined with an autoimmune flare has left me bone tired exhausted. But today, I don’t just see IVIG as another one of those things I just have to do, I look into my eyes and see bravery. I see a woman who isn’t giving up. I see a me I am actually proud of.

I might look a little battle worn today, but I’m here. I’m still feeling light filled. I still slay the effects of CPTSD while being the healthiest me ever.

Sometimes a picture that doesn’t portrays perfect is exactly what we need to see to enjoy the perfection of just our existence.

Love

Lizzie

Changing Realities. Changing Times

With my relapse of my chronic inflammatory demylenating polyneuropathy, I’ve had a lot of time to reflect. I’m constantly reflecting, but when you are mostly stuck flat with bone crushing fatigue and incredible pain, after I lament about how awful it it for a few minutes, days, weeks, years lol, I go to my reflecting place.

This is a picture taken awhile ago where my body gave me a break, I had a new and excellent job waiting, I had just come home, I felt really strong emotionally, and my son and I were going on some small adventures. It felt like all was right with the world.

Within 2 months of this picture being taken a lot happened. I couldn’t take the job, I was thrown some new and challenging responsibilities and my neurological problems hit hard, literally, when I fell and broke 3 bones.

I had been telling my neurologist I had been falling. I told them I had broken 4 other bones from falling in the past couple years, so when I hobbled into the office with my boot on as I completely shatter my big toe, a big fat purple cast as I had broken my hand in two places, and a brace as I had chipped a bone off my elbow (guess that’s technically 4 breaks), I kind of jokingly said to the neurologist, “do you believe me that I’m falling now?” I think it was clear.

I recently got the neurology notes from that couple years that don’t say much, but I’ll give you the humorous synopsis. It starts as “patient is most likely manifesting symptoms” to the final being “oh shit!!” In other words, there was a lot figured out, but the last statements have to do with some mysterious neurological complications that had never been seen together.

I’ve spent the last few days attempting to get ready for my loading dose of IVIG that starts in the morning. I didn’t have tons of success as my legs are garbage right now and general pain from my fused spine and degenerative disc disease limited me. I certainly haven’t felt too free.

I was approved for a grant to make my house disability accessible. I felt silly as I’m not disabled. Yeah Lizzie, because everyone has a spare pink wheelchair on standby and forearm crutches, like everyone, right!?

The first thing the grant paid for was a literal surgeon’s stool that pumps up and down easily so I can transfer from my wheelchair to the stool, pump it up and be able to reach everything in my kitchen. Think barber chair, but an elite race car model.

Reaching for my top cabinet, for just a few moments, I remembered that freedom feeling of doing something with ease that I used to take for granted as do many, simply being able to cook. I have celiac disease so I make everything at home as well as follow an anti inflammatory diet/plant based eating plan. I do it to survive, not to be a crazy health nut. My wheelchair is too low causing me further pain to do kitchen stuff.

After an intense week for several reasons including a health appointment wanting to send me to a rheumatologist, an immunologist, and infectious disease specialist…, I was ready for a break.

Physical disability looks different for everyone. The use of my new stool to move about my kitchen gave me that touch of freedom I felt that day the first picture was taken. I felt freedom when my forearm crutches had been made. I felt freedom the day I picked up my custom wheelchair.

Freedom might not look like my throwing my hands out standing on just my own two feet enjoying the promise of a hopeful future. Sometimes freedom is being quiet for a bit, knowing your truth, acceptance that not everything is right in the world, and moving to appreciate what is.

Love

Lizzie

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