For those of you who have traveled the length of this journey with only compassion for me, I must begin this entry by thanking you. I rarely focus on the ones who have turned away, fallen away or questioned me openly or behind my back about the extreme complexity of my body and this relentless search I have been on to find answers and some kind of "real" life again. When I unearth true medical reasons for my pain, sickness and suffering I am relieved not only for myself and hope for treatment but also because I want the people who have shook their heads and fingers over the years to at least try to understand. I continue to write here because at least once a week someone emails me from around the globe who has found our story and identifies in some way. I began sharing to help others find better treatment because of the difficult road we have walked. I want to tell you about a new "Aha!" discovery right now. Settle in. It starts with strep throat. Or maybe it doesn't at all, but that's the clue. Strep throat and a brain on fire. If even one person reads this and recognizes themselves or someone they love I will be glad I tried to type this out today.
In December of last year a book I had been waiting to read was finally released. I had seen a story on Susannah Cahalan somewhere leading up to her book coming out and several key parts about her experience felt so similar to my own I knew I had to find out more. I read Brain on Fire in two evenings. I found myself sobbing in parts. I kept stopping and putting the book down to remember to breathe. I also gave it to Dan immediately after I finished, and he read it cover to cover in two days. He gave it back to me and said at points it felt like I was writing, especially towards the end of the book when she is trying to recover lost parts of her mind. He was blown away.
This is the first time I considered I might have something in my body attacking my brain. I had actually explained it like this for years to Dan and others. I knew it was not as extreme as what Susannah had experienced, because I was not having full blown seizures. Although I do believe I have had absence seizures or periods of time lost where I do not know what I was doing. Still, If you look back over my life there have been episodes of extreme physical illness followed by periods of psychological manifestations including bipolar behavior, severe OCD, anxiety and deep depression. They would come on quickly, and I would fight my way out of them with medication, therapy and lots of grace, but I never knew when the next bout would come. I had several longer periods in my life when I had almost no sickness or depression. I was healthy and happy. This always led me to believe I was not in fact a true bipolar. During my sickest and most manic periods I made horrible life choices, some I've never fully healed from. I always had the "real" Monica sitting just outside reminding me the crazy girl was only visiting. I just had to wait out her stay.
Since I was a child I have known what real depression is. I could tell you without a doubt there is a true thing that happens to certain people that cannot be explained by circumstances or environment but purely by something happening deep within their body. The intricate chemistry of being glad or sad is not remotely understood but must be acknowledged. I grew up with another confusing layer of thinking somehow being happy and healthy was tied to my spiritual well being and that knowing Jesus and doing the right thing was the band aid or pill for most anything. If you've read here long you know I have continued to struggle with being sure of God's love for me in the midst of so much pain and suffering. I have found peace knowing I can be full of joy in the Lord and not be "happy" at all.
If you look at my medical history from my early twenties until now there would be a long red common thread of sore throats, specifically strep throat. Over and over and over I have been treated for strep and accompanying infections but have only felt some resolution of symptoms and not eradication of the illness. In the past twelve months more frequently than every 30 days I have been back to the doctor for more and more antibiotics. My family can sense when I am getting sick. The sore throat comes on with even the slightest stress including the headache behind my eyes, a rash on my chest, a fatigue so unbearable and most notably a sudden outburst of intolerance for something in my environment. There is no other way to describe what happens except as "CRAZY." Since my mast cell diagnosis I thought these were triggered by environmental things alone. The trigger was giving me the sore throat and making me sick and I was reacting to the chemicals or food or whatever unknown enemy had invaded. In a way this was true, but the attack was my autoimmune system ganging up on itself and targeting my brain. A pitfall of having so many comorbid health conditions is not being able to see the forest for the trees when symptoms overlap and you pretty much always feel sick.
Endometriosis is also an autoimmune disease. My inflammation and pain and psychological symptoms have always spiked when the endo is active and growing. Again, this is something I could actually feel happening inside me, like an storm gaining strength off shore, but communicating this in the midst of so many health issues is a hard thing to do. When my endo has been worse the number of infections elsewhere in my body would always increase. This too was something that ramped up in my late teens, and I began needing surgical intervention for in my early twenties.
After reading Susannah's book I did some research online, but I wasn't brave enough to even bring up this gut feeling I had with my own doctor. It wasn't until very recently when a very brave woman I met in one of the online support groups I belong to mentioned PANDAS, Pediatric Autoimmune Neurologic and Psychiatric Disorders Associated with Strep, that I knew I had to at least try to seek diagnosis and treatment. Although rarely, an adult could acquire PANDAS, most commonly adults have had PANDAS for many years but either it has not been considered or it has been misdiagnosed and typically poorly treated as some other neuropsychiatric or physical complaint. I certainly believe this is true in my case.
In the research there is evidence a predisposition genetically is combined with other factors to create the rare (and we all know rare really means misunderstood and underdiagnosed) disorder. If your child has had a sudden onset of behavioral issues following any kind of virus I would suggest you click through a few links here and keep a journal of infections and symptoms. Strep is just one of the infections known to cause this sudden onset of neurologic and psychiatric disorders which can manifest in Asperger type symptoms all the way to full blown mania.
The day before I left for my latest Maryland trip I asked my amazing general practitioner doctor to test me for several specific strep titers. I have to add here my doctor is one of the most compassionate and involved physicians I have ever known or heard of. I owe so much to her willingness to hear me, even on the crazy days, and her faith in me on this journey. She is one of my angels. She drew the blood, researched the tests and began to think about PANDAS while I was gone. When I saw Dr. Henderson I told him about my suspicions. He didn't miss a beat. He wrote the scrip for the tests my doctor had already run for me and then he wrote a scrip for the first line of treatment which would be six months of penicillin G injections. I felt very sick on my trip. If you had the sore throat, headache and fatigue I had you would have cancelled the trip and stayed in bed. This was how I felt literally all the time . . . for as long as I can remember.
The night of my surgery I got a message from my doctor with the results of my strep titers. They were really high. I had surgery on a Monday. As soon as I got home and settled in I made an appointment to get my first penicillin injection. My doctor helped me in the struggle with insurance and getting the injections not readily available sent to her office and billed through her to me since they are not self administered so I could get my first one on that Friday. We tested my titers again that day and then did the injection. My titers had continued to rise and my symptoms were even worse on that day. The injection was incredibly painful, particularly the day following. I had my usual response to very strong antibiotics in getting a bad thrush reaction that needed treated as well, but I felt better within 48 hours. Within a few days it was like a fog had been lifted from me emotionally. It was true clarity of spirit. I wrestle with having had the surgery and this treatment so closely together, because I may always wonder what to credit most for the freeing of the demons. In my heart I know it is a little of both. The freedom from the crushing pain in my belly along with feeling a measure of health I have not in months and even years has brought a hope I didn't even know existed.
I am having some return of sore throat already. I spoke with Dr. H's nurse today, and she said to stay the course and test the titers the next time we inject. This is the first line of treatment. It may resolve symptoms but not eradicate the infection from my body. In this case we would move to more radical methods like IVIG infusions or even plasma exchange. The good news is we know in part what we are dealing with. Knowing is everything! The other really exciting part about this is understanding for Danica. She has had strep three times in the past year. Each time Danica gets ill she begins with a neuro decline that we have always associated with her Chiari. Our generally sweet, compliant, super emotionally adjusted and mature child will begin to argue, cry, throw fits, cling and exhibit true OCD symptoms like chronic handwashing and fear of certain food. As she gets well these slip away almost entirely. Danica is healthy now so we will not test her titers until she she becomes sick again. Still, as someone who has dealt with the unexplained sickness of mind and body for so very long I feel the incredible hope of being able to help her if this pattern continues. Danica and I are quite simply the same in a million ways. Our immune systems mirror one another as well. I also hope if I am not carrying step to her constantly she may be able to stay more well. This would also include the other infections we have battled like the more dangerous strain of staph, MRSA.
Dear ones, I asked recently you would pray if I would know if I should continue to fight for treatment. My abdominal pain became so severe I had to move forward with surgery. Thank God. I am so grateful for this relief. Just today, to not be shackled by the depth of suffering I was in is a miracle. Many felt I should have cancelled my trip to Maryland just days before my planned surgery. In God's provision through others and something deep inside me I knew I had to go. This was so clearly the right thing to do. Because of the great wisdom given to my neurosurgeon I am being treated for something I know has been making me super sick for oh so long. The hope in my family and I is palpable. I also found out the very real pain in my neck, particularly on the right side, is being cause by my fusion hardware. This is an answer to prayer because my scans did not show progression of instability further down in my vertebrae. It has stayed the same. My fusion is also complete and beautiful. Lord willing, Dr. Henderson will be removing my hardware three weeks from today, on August 12th in Maryland. The picture above is what needs to be taken out. We have been given $1600 of the $3000 deposit needed to move forward already. This is no small thing to be led by the sacrifice of others. We will also have travel and almost a week of hotel while we are gone and Dan will need to be off work. This is a particularly trying time for him to need time off but he always faces it with the same love towards me and confidence in choosing family first. So soon on the heels of my recent trip to Maryland and also the huge surgery at Cleveland Clinic we are bare. We live in this incredibly humble and blessed place of dependency on the love of God for us through others to keep walking. Here's the exciting thing. I feel like this is perhaps the most hopeful time in my journey. Removing the endo and the hormones growing it and removing the probable cause of so much sickness and then the metal in my head and neck rubbing and grinding with every bump are three HUGE steps in me feeling well and having a better life. Oh how I want to be here more for my husband and girls and for all of you, too. I want to serve more and love more and live more.
All this said, please PRAISE. I mean lift your hands to God and thank Him for the great things He is doing. And please PRAY and ask Him to continue to show Himself in our lives for His glory. OUR HOPE REMAINS!
