This. So much this. An excerpt from Victor Frankl’s “Mans search for meaning”. I often tell people what thrust me into emotional healing was a ton of physical suffering. Frankl also mentions in his book that finding meaning in suffering is the highest achievement in finding meaning. He wrote that in a survey of who people admired most done in the 1980s, it wasn’t academics, financially successful people, great artists or even writers, the people they admired most were ones who suffered great adversity and held their head high. He writes in depth that American society thinks the only way to be is happy. Sadness isn’t pathological. I’ve been saying it for years. Guess Frankl beat me to it by many years. Read some books. You might find some meaning.
The night before last was bad. My neck is an arthritic, herniated, rare type of migraine causing disaster. It’s called occipital neuralgia.
I take pictures of everything in my world. By 4 am, the pain in my neck was so awful, I was just waiting for the ice to work. I couldn’t meditate or breathe through this pain, so I sobbed at how unfair it is. I won’t take an opiate at 4 am as I need to be clear and alert during the day. I rarely take them at night even.
The ice set in. It calmed the inflammation. I took a prescription dose of ibuprofen and got myself to “therapy” by sunrise as “ding ding, Lizzie you need to have an emergency therapy session with Mother Nature”.
This is my therapist: large, granite monoliths. This therapist is rock solid, literally 😂. Leaning into the power of this particular therapist reminds me I’m strong. I’m reminded I can do it. I’m held up even when I should be falling over. It gives me a break from my pain even though doing this causes me more physical pain after, but I sometimes decide the cost is worth it. Emotional freedom is ok with me. Chronic pain is chronic. It’s not going anywhere and as overwhelming as that feels, I can choose to be liberated into health in my mind. I’ll move while and when I can.
And today I played trying to figure out my backpacking equipment and scouring the internet on how to make it happen with a very bad back without causing further injury. My added bonus is I learned my $8 backpacking stove boils water in 3 minutes. An anomaly for cheap!
This is my friend Ann. Today is her birthday. She is a Thai woman who works in Bangkok during the week and goes approximately 90 miles via a commuter van to her home province every weekend to be with her family.
I know Ann through another friend. I’ve never met Ann, but when I became friends with one of her family members in the United States many years ago, she friended me on Facebook. In her initial message to me, she said “hello my sister”. In the years that have gone by, Ann has treated me like a true sister. I have biological family, I’ve had plenty of chosen family, but she encompasses what sisterly love truly looks like to me. She is the only sister to call me a sister who feels like a sister.
I can’t exactly explain how important she is to me to her as even though her English is pretty good, a lot gets lost in translation. No country is perfect, but the way the Thai people encompass community and giving, always inspires me.
Each year, I get excited to read her birthday message. It’s very different from the United States where we expect people to celebrate us and give us things. She offers thanks to others. Last year she thanked her parents for giving her life. She thanked her friends for holding her up in sad times. She thanked the “god in the sky” for blessing her with a baby girl that brought her smiles.
I know Ann doesn’t have a simple and easy life. She is joy filled, gracious, and I learn so much from her. This was her birthday tribute today.
I love that she wishes blessings for others. She gave to her country and donated to the monks today. It wasn’t about what she got. It was about what she receives and her wish to give it to others.
A couple weeks ago she sent me a message that said, “Lizzie. Please come back. Show my daughter what it is to live”. I hope someday to be well enough to go back for an extended period and of course the world has to heal from COVID.
When I went to Thailand at the drop of a hat nearly two years ago, I planned to stay longer and was going to go with her to her home province and meet her family and her very young daughter. I didn’t get to go. I had to get home.
Ann was a huge reason I went to Thailand. I didn’t think she would be as gracious with sending her massage therapist to me and giving me ideas where to go and how to circumvent tourist traps like taxi gouging, but I was honored. It wasn’t even Ann that made me go exactly, it was just the kindness and kindness I experienced from her family member that I wanted to go see where this kindness was created.
I wrote about my trip to Thailand awhile ago. It was the craziest thing I ever did. It also gave me the most sanity. I went alone and booked my trip just a couple days before I left as I had a moment of feeling better and was honestly cheaper than staying home. It was the last of my savings. It was the best thing I could have spent it on. Everything aligned for me to go.
I need to do something a little “crazy” soon. I’ve felt like I’m in some kind of weird sadistic experiment lately as it’s just felt like how much more can be piled on me before I break. I don’t break. I get sad. I get upset. I sometimes lapse into hopelessness. I don’t discuss the complexities of all I manage, but I’m feeling heavy. I still maintain hope. It just feels a little different lately. It’s not depression at all. It’s just a lot.
Looking at the handful of pictures I took in Thailand, I will just leave you with this one. When my plane pulled out of the gate in San Francisco heading to my first layover in Tokyo, I thought of faking a heart attack so the plane would go back to the gate as I had a huge rush of anxiety of realizing what a crazy idea this was. I was on a Japanese airline, the only white person, ok that didn’t bother me, but no one was speaking English. I was going to a country I knew nothing about except that google said it was safe to travel there as a woman alone. I didn’t even know what I was going to do there honestly.
Just as I was about to hit the call light to alert them to my fake heart attack, a little Japanese toddler in the row in front of me turned around and gave me the biggest smile. I knew it would be ok.
So this isn’t a picture of how calm I felt there or pictures of Bangkok. This was a picture of my plane descending into the airport on the outskirts of Tokyo. All I had seen was water below me for 10+ hours. Suddenly, there was green land. I was arriving in Japan! A chronically ill woman alone. I wasn’t looking backwards towards that gate in San Francisco. I was looking forward to navigating making it to my connecting flight to Thailand with silent tears streaming heavily down my face that after so much of a lifetime of being afraid. I was definitely being crazy. I was also being brave.
I have multiple chronic illnesses. Somehow I keep thinking I’ll escape the idea that chronic means forever. I guess I have this vision that I’ll regain energy and abilities that are gone.
I have been slowing down a lot. I’m making space for people in my world that gets more and more limited as I realize the limits on my energy. It’s not as much a sadness as an acceptance.
I was tired today after an impromptu out of town guest spent the night as we talked late into the night and woke early craving more conversation. This past week has been a lot of planning and doing as I prepare for what looks like entering the world of employment again within a few weeks. It’s an incredible opportunity. It’s honestly a gift.
After my guest left late this morning, my instinct was to go outside even though my body was begging me to go back to bed. My head was pounding.
I decided today hiking wasn’t going to be about distance, calories, miles gone, or a destination. Today was about finding a quiet spot to sit and enjoy that my life can still be as joyfully spontaneous as my symptoms are that make me feel sick and destroyed without much warning.
I didn’t track how far I went. I didn’t notice the time. I did find a shady perch on a huge, granite monolith characteristic of the eastern Sierras.
I took off my shoes and sat. I felt grounded being there. I also felt very tired and even though I wished I could sit on my perch all afternoon, I noticed how much I could enjoy the time I was there to just be.
The hike back was gratefully shorter than I thought I had gone. I ate my snacks quickly and drove 45 minutes back home.
My body hurt. My arthritic neck was asking me “why?”, the headache that was already there before I departed was stronger. I got a very quick shower in and fed my dogs. I think I was in bed by 4:45 pm and asleep within seconds. I was kind of mad at myself for doing it. I was angry that something quicker than my normal had depleted me so much.
As I wake up 2 1/2 hours later where the sun is still up, but I’m not personally getting up, I know why I did it. With the pain and fatigue my little outing brought me, it also gave me a few moments of respite from my chronic illnesses. Sitting on that huge slab of stone with my shoes off made me forget the complexities of my world that contains hardship as well as lots of hope. I sat on that powerful surface not even thinking about much except being fully present in that moment. I wasn’t looking back. I wasn’t looking forward.
And I’m not mad about my body being so tired from a little adventure into the calm of the mind. The calming and grounding of nature is an escape to peace.
I had a goal in spring to keep increasing my mileage in hiking so that maybe I could keep up someday with my hiking friends. I realized there’s a good possibility I won’t ever get there. As I slow down and allow my body to do what is naturally within its capabilities versus what my mind wants to do, I get something greater than an increase in distance, stamina, the ability to keep up with healthy people, instead I gain an appreciation for myself and no matter how many miles I put in today physically, I went an infinite number of miles in my mind and my soul.
All I wanted to do was be barefoot in nature. I got it. And if there’s another day I long to ground my bare feet into the earth with a day I’m not able to get up, I can stick my toes in my houseplants at the end of my bed remembering the day I sat on a granite monolith completely at peace knowing that chronic is forever. The day I gained so much more acceptance that I probably won’t keep up, but who am I racing? If it’s just me, I already won.
I took advantage of the early morning cool temperatures and glorious clouds that are rare in the high desert to do some gentle yoga and a short walk in a local park. I’ve been turning down my exercise notch a lot. I’ve been tired and my muscles just seem to get very heavy and fatigued. I broke 7 bones in two years from falling. I’m good with only having broken toes lately that I can tape together as my proprioception is off. That’s fancy for I can’t figure out where I end and the wall begins. It’s a neurological problem.
When you live your life no make what it is, it feels normal. I sat in the grass feeling very centered and ok that I’m slowing down a lot. A couple coworkers from a job I quit in 2016 due to disability happened to be at the park too. So I walked with them for a bit.
I listened to the complexities of the inner workings of my old job and what a disaster it can be on so many levels. I hear people talking about their jobs all the time. It’s so different than hearing about a job I used to do. And I remembered I was grateful my body became instantly paralyzed in 2016 eventually leading me to have to quit.
I kept up with them fine with pace. What is always interesting to me is how people move so smoothly on their own two feet alone. Like how? If I have to stop and have some water, I actually have to stop even having a mouthpiece to my water hydration right on my pack strap. I have to get my balance to put a crutch against me while I drink out of a device made to be used without stopping. They kept going while drinking out of regular water bottles. I forget how easy the process of drinking water can be.
Even with slowing down, I often think I can’t be sick. It doesn’t matter how much my body fails, collapses, dissolves into some new disaster…I’m completely fine.
Where my sick line gets blurred is that over 2 1/2 years ago I just decided that I was going to do everything possible to be healthy as even though I didn’t have much in concrete diagnoses, my body was being strange. I was growing into so much emotional health, why not physical health?
I had periods in my life that I was pretty healthy physically and worked at it to have something happen, whether a surgery, an emotional event, or something else that made me give up without making it sustainable. I’m committed and have been so, for what I can call years now. A new record!
My former gynecologist turned into sometimes hiking buddy, often my plant based, anti inflammatory recipe sharer, my confidante of good news, her inspiration, and listener of my hard medical reality got me into one of her friends who is a primary care doctor with full confidence she would be supportive and coordinate all my care.
I’m not too sick though! This is my list of most of my diagnoses that are being treated on some level decently.
This is the “needs work” list we have to get me to other specialists that already have imaging or testing that they exist and/or needs further evaluation. Yes, there’s overlap.
The “HCC” code after many is a flag for medical billing in the US that an insurance company knows this is going to be expensive and lifelong.
Pretty impressive list for a healthy person though. 😂 This blog post is more for myself on the days I can’t move or get everything done or be that person for everyone or be all the places I want to go or fulfill all the dreams that swim in my head. This is my reminder that I deserve days I can’t go or do.
This is also my miracle list. This is my miracle post that by eating a very healthy anti inflammatory, plant based diet that allowed my body an optimum vessel to maintain a healthy weight and working to be alive (except when I get too skinny, but I’ve been a yo yo dieter on the larger side that was unhealthy most of my adult life), by quitting smoking, by getting in the exercise I can, by learning and embracing so much about mindfulness has me moving well when my body shouldn’t go. Yay me for the commitment!
I sent my old gynecologist turned all those things listed above a message of thanks for sending me to her primary care doctor friend where I did feel validated and given the proper referrals to even get things checked that no one else ever even thought about even if it’s not amazing. She asked if I liked her. I told her I felt comfortable that she will do what a primary care should, which is coordinate all this medical complexity as I’ve been running doing it myself and “now I can leave the doctor stuff to the doctors and focus on making cupcakes”. She responded that she loved it as she saw this picture earlier of my plant based, dairy free, refined sugar free, anti inflammatory, gluten free, completely adapted recipe from a regular applesauces spice cupcake recipe as I do love baking. Pretty food that is healthy is fun too. Seeing as my old gynecologist promotes a plant based eating lifestyle to combat many chronic diseases, she thought it was beautiful.
Tasted great too, well to me. And I’m giving myself a break from being a straight A student at managing a complex life.
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.
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.
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?
Lizzie and my two little furry philosophy teachers
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.
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.
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?”