Fireheart - A journey with MOGAD

04/21/2025

Some patients it took so much longer to diagnose. I love this gentlemen’s description on how it affected his life and work. No one’s prepared for the sudden death of their life.
Learning to let everything go filled me with grief. I was worried I’d be stuck in the low MOGAD takes your body to. But times heals all. So I’m living in this time. I have had the most incredibly supportive family from all over the United States. Letters came from family quite distant but had some of the largest impact on my recovery.
My Aunt GrammyMom Darlene took me on small walks until I could carry the weight of my body again. Then she found a hill, I thought we would take months to conquer, and we nailed it first try. (I should mention here it was three hills going straight up a street the top was the end of the street) I was so weak but I still had fight. So as often as possible we would go for drives and walks. Discovering so many wonderful places. Some days when it was too hot or I was having a bad day we would go get coffee and just chat. Some days I would wake up and say there was no way my body would move. Two hours later we would be finishing a walk around the lake on one of the most beautiful mornings I’ve experienced. My ankles tripped a lot but gained strength from these gentle walks. I call them gentle but we were definitely scrambling up rocks at one point. People much older than me shooting past because it was easy for them. We didn’t climb anything or go up the mountain. I couldn’t. But scrambling around the lake was more than enough to build my heart and my body. She found so many great places for us to explore. I hope to get them all recorded here some day.
My father eventually joined us just before winter came. Watching him learn to walk again as well was both invigorating and terrifying. I had to remind myself that, I in fact am not his mother, and to allow him to learn on his own. Us women of the Handley family have a knack for always knowing what’s best (hahaha). But together all three of us were growing and gaining strength. That’s really the message I have for you today if you have made it this far.
Our family and the people we consider family is the most important prize we can collect while present here. I had been in a survival mind for so long before this snapped it’s fingers and redirected me. I wish you all well!

03/31/2025

https://www.neurologylive.com/view/challenges-diagnosing-optic-neuritis-in-ms-mogad?fbclid=IwY2xjawJXCIFleHRuA2FlbQIxMQABHRMTAlxIG_1Zz-zwR-ghoZCBsSgJbUU85TuywwQUl9QiQWzrS2SHdFjzew_aem_nnZw9gbjCibEa1f93oil4Q

A pair of neurologists provide clinical insight on the difficulties with identifying and differentiating optic neuritis in various autoimmune conditions like multiple sclerosis and neuromyelitis optica spectrum disorder. [WATCH TIME: 4 minutes]

03/30/2025

https://www.aao.org/education/interview/pocket-steroids-mogad?fbclid=IwY2xjawJWortleHRuA2FlbQIxMQABHbkloLXufJ_gs0-GWI_QliRspnP-eQT70YEqL7KcL-RKafLON1PEbLRIrQ_aem_ZKL9ycWXJ38ucjOkyXaYjA

Dr. John Chen speaks with Dr. Chantal Boisvert about how having high-dose oral steroids on hand can significantly help some patients manage flare-ups of myelin oligodendrocyte glycoprotein antibody-as

03/15/2025

For anyone doing IVIG treatment:
Some batches have been recalled. They can be found at the link below.

https://www.fda.gov/safety/medical-product-safety-information/immune-globulin-intravenous-igiv-and-immune-globulin-subcutaneous-igsc-voluntary-lot-withdrawals-due?fbclid=IwY2xjawJCpgpleHRuA2FlbQIxMQABHfms_EgwtyT8M_GLMaruo36Vmlv-xgSa3cSXl34KdPIBG4Pdpz_LVmh3hQ_aem_HoLwMhBTCHInTO0wILhYVA

As a precautionary measure, the following lots of Immune Globulin Intravenous (IGIV) and Immune Globulin Subcutaneous (IGSC) have been voluntarily withdrawn by the manufacturers due to a higher rate of allergic/hypersensitivity type reactions, some of which were considered medically significant.

12/12/2024

06/01/2024

I have been in a good bit of pain but my spirits are strong. Yesterday I finally cleaned up and started making the garden. I know I’m late to the season but better late than never. This was a lot of work! I had to pull all the grass and weeds and rake it clear. Then I drug the boxes in and murdered or removed all naughty bugs. I cleaned up areas of the yard to gather sticks and leaves to fill the big boxes then hand sorted through the dirt I shoveled to get rid of rocks before adding that dirt into the moist leaves and sticks. I moistened that dirt down and gave it a good sifting then added a little more dirt. Picking up out compost/ soil today and my very excited husband brought home all assortments of tomatoes and squash. I also purchased some marigolds and am taking all tips and trick for keeping the critters away. I have chipmunks, squirrels and am in the process of building a bird oasis on the other side of the yard so they go there (high hopes) instead of my garden. I took these photos of Sage today who surprised me by claiming this bed as his.

05/06/2024

When a bad day comes I can usually be found over emotional and crying my way through it. Between the pain behind my eye and the blurred vision I know the inevitable has come again for it’s redemption. Always in hope I am overreacting through the night or day I wait until at least 10 hours has passed typically before I declare it. I cry at the thought of being dragged back to the sick place I cannot escape with its ever polished floors glaring the light so harshly it reflects beams into my vision. Leaving me staring at my twisting hands holding one another as I try again to brave my way through every IV, blood draw and machine they shove my body softly into with utmost care. People are dying I tell myself. There are children somewhere on a floor above me braver and stronger. Think of the children. I smile behind my face mask hoping it reaches my eyes and tell jokes the way my father would. I call this fiend “a thief in the night”. For in darkness it comes and my vision it takes. Maybe I will be lucky this time. Although what is luck? Haven’t I already used it all up? I am quite grateful each day. I have improved at withholding my tears at every small event I get to see unfold. My furry children keep me as busy as my teenagers and as I have been digging and pulling in my garden these past few days I have spent so much pondering. I find myself wondering what my grandmother thought of as she tirelessly worked her hands in the soil day after day. Where did her mind go to? Who did she think of? What did she ponder? What visions did she see of herself and life, as I was, with each strike of my spade into the hard clay? Knowing overhead billions of galaxies 🌌 were suspended in the same moment of time. How small and humble I feel. How complete. Maybe I could spend years tinkering in my gardens I will create. Maybe this is how I will grow now. Still beautiful and wild just with a constant need for tending.

03/16/2024

Prednisone

My back started to become encompassed by a strange rash. Much similar to hives. I could not see it myself, nor was it causing me any discomfort as it began. Rather quickly I suppose I was covered in it. That is when I started to itch. Touching it had become painful, so I finally let Ryan have a look. They went from my rear across my back and were beginning to cover my neck where I could no longer conceal them. At my next appointment we showed the nurse and agreed this was a sign my body was not tolerating the steroids I took daily. I began taking Benadryl nightly which did help quickly stop the spread. Over months it has slowly diminished to my back mostly. I also had insomnia from the steriods and nights that I wasnt awake until 7am I was woken instead by the raging acid reflux my medications caused. These bouts were so severe I was gagging or vomiting as I woke. Id pass out on an ice pack sitting up just to catch a few hours of sleep. I had become incredibly hungry and would cry because I struggled to handle how hungry I felt always. I knew if I fed the hunger I would not be able to stop eating . I already had stopped eating sugar or having it in my drinks because I was warned it was almost guaranteed I would become diabetic from the amount of steroids I was having infused as well as taking at home. My body was fighting so hard. Against me and for me. I would spend days in bed ill from the steroids and medications. I tried my best to trust that the rest I was taking would lead me back to my life before illness. Everyone agreed that this was the time I needed rest most and to only worry about recovering. I quickly inflated like a balloon. First in my face and neck and then finally everywhere. I became unrecognizable to myself. This was about the time my right eye had its first attack. My body was simply rejecting the prednisone altogether and I started a new journey with an at home injection. A nurse came out to our home and Ryan bravely learned how to properly withdraw my steroid from a vial and inject it into my skin. Every single night he stuck me, flawlessly. It was not a weight I wished for him to bear but he was determined I was already doing enough. However, my mind began to weaken. I was chained to my refrigerator now dependent on the daily injection that needed to be kept within it. How would I ever leave home? I was in constant pain and suffering from migraines. I could not see well. So, I snapped. Exactly as the doctors warned my husband (privately) that I might. I remember feeling a build of sadness, fury and negativity at no one and nothing. I went to my room thinking that I needed the adult equivalent of a time out. My room at the time had 3 large mirrors. One over the dresser on Ryans side, one over my vanity directly across and one body length in the corner. I saw myself from everywhere all at once and I imploded. In a blink I was laying on my bedside floor gasping for air my vision hardly there. The creams, lotions, lipsticks and other various beauty products that I kept neatly organized atop my vanity were scattered all around me and my full body mirror was shattered beyond repair. Ryan found me this way and laid on the bed above me talking to me for roughly two hours about nothing and everything at once. My mind slowly calmed, and my vision returned to its usual rough view. I was finally breathing normally again. Once I was ready, he helped me up from the floor and together we put back what was wronged. He also kindly removed every mirror left standing from our room. One he replaced with a large photo of a pier on the water at sunset. Birds flying by. Much like where he proposed to me. We both agreed he would know when I was ready for the mirrors to return. Steroids were ruining me in every way possible. My heart was shattering. My medication needed at LEAST 6 months to take hold and weaken my immune system. Thus was the beginning of medically induced anxiety. I hit a point where I didn't want one more needle in me. I was becoming something else and losing all control. Or so I felt. Ryan, my parents, my aunt, family and friends were there to reassure me that I was still kind. Still lovely and I was still myself. That my terrors were reasonable, and I could overcome them. So, I did.

03/12/2024

No one comes along and tells you that this is the right thing for you. YOU decide for YOURSELF what is right for YOU. Which adventure is YOUR adventure.

Wiebke Luhmann

Photo from 2019. The first time I touched the start of the AT thanks to my now husband who heard my dream and embraced me.

02/29/2024

I have to slow down and truly try to rest for (hopefully) only a few days. A normal but not so easy part of my medical journey with MOG. I’m going to try to focus on updating my Fireheart page so we can get caught up to current times. I have so much to share.

01/18/2024

Right Eye
I felt the pain begin much the same as the left had. I called my Neurologist on the second day. I knew how fast we needed to take action to try to prevent vision loss. It was TWO day's after I saw my ophthalmologist and Neurologist to get the green light to return to "normal" life. I went and got another CT scan. How many hours have I spent in them, I don't know, but I have been in every one this hospital system has now and can tell you which is the most comfy. The results were the same as before. 80% healed on the left eye and no damage visible on the right. I cried a good bit at those results. Out of fear. If the test showed no damage and yet I felt it exactly the same as I had when the left began...how much vision would I loose before it showed damage? I was again put on another oral steriod dose and sat down for a talk. I finished my dose of oral steroids for this attack then two days after started blurred vision in my right eye and color loss. I was again hospitalized and treated with IV steroids. I finally got to sit down with my Neurologist in person and go over all of my tests, results and findings. He helped me better understand my condition/diagnosis and what treatment options were available. I was never supposed to start and stop my at home steroid doses as prescribed. My medication needs time to take hold of my immune system and the prednisone was to weaken it or act as an aid against the attacks. So I would continue my at home steroid until the attacks ended and the other medication had a hold.

My body quickly began rejecting the prednisone which is a whole story of it's own. I wrote this back when it was happening and am using it now to catch you up to today's time. I can only do so much reading/typing before a migraine begins so I will stop here for today. Thank you for listening :) Talk to you soon!

01/18/2024

MOGAD
"My left eye was again on the mend after my second hospital stay. I was sat down and explained the situation. MOG + antibodies were attacking my body. Right now it was just the nerve of my left eye but there was a danger that in the future an attack could be on my right, both, my arms or my legs. This is a rare lifelong disease that was developing. I would need to take medications everyday for the rest of my life. Okay, no biggie. Give me the medicines. I can do that. I was out of work and unable to drive but that was okay because I needed to rest. Adjusting to the medication was a process. Although no tests showed I had MS (Spinal tap, MRI, CT. bloodwork etc) the treatments are similar. So I take the meds each day and lower my body's immune system. I was weak but I fought through. My vision got better and my nerve was rated 80% improved. I was finally ready to drive again and return to work. That was June 11th and I am typing this on July 5th. I never got to return to work."

During these months I was going to physical therapy for both my eyes and body. My balance was affected as well as my hands. I had weakness in my wrists and my hands tremored. We started playing Pickleball on the new courts at our town park. This was with bright colored balls to help my eyes track and also so I could be quizzed on what color we were using. It wasn't easy but I am quite competitive and determined. They also had camping at the park one sweltering night and Ryan went to and from our house through the night keeping ice packs on me. During this stage in my healing heat would cause my vision to go black and take some time to regain. I had to take lukewarm-cool showers with assistance. We also made it to our town's fireworks. These are all things I would normally miss because I worked so often and while I could not see to full capacity, I was grateful to see anything at all as well as hopeful for the future. All this time with my family was showing me something my heart needed to see, not my eyes.