Monday, July 22, 2013
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!
Posted by Monica Kaye at 4:16 PM
Tuesday, July 9, 2013
"What once seemed such a curse has become a blessing. All the agony that threatened to destroy my life now seems like the fertile ground for greater trust, stronger hope, and deeper love." Henri M. Nouwen
I bought a nice Kenmore vacuum when Delaney was two years of age. I loved the canister style as it did a nice job handling the dirty interior of vehicles with special little attachments as well as bigger general duties around the house. Even before Monica was diagnosed with EDS she had so much pain, especially in her shoulders. The "chore" of floors easily became mine. I find pleasure in the ritual, the whirring sound of the motor and the results. The old "sweeper" devoured everything from dust bunnies to little bits of crayons. It was a faithful work horse until I decided to vacuum out water from our refrigerator's drip pan when it needed repairs. A Shop-Vac it was not. The years and years of service was evident even though we tried to cover up most of the scars with Disney Princess stickers, duct tape and the girl's names spelled out in stickers. I was so fond of this old broken down girl. Even after it quit on me I kept it sitting in the garage, because I couldn't quite seem to let go.
Our budget is always almost impossible. Monica has had so many continuing health issues this year. Her out of pocket expenses, prescriptions and copays are never ending. She juggles all this. I know the stress adds to her already overloaded mind and body. I admire how dedicated she is to trying to keep us afloat. When anything special comes up like needing a vacuum the money is just not there. We don't have credit cards. We live on a very fixed income that is quite simply not enough sometimes. We had been cleaning our floors with a dust buster type vacuum and on our hands and knees the past few weeks. The trip Monica had to take to Maryland last week was another road block to saving enough to buy a new vacuum.
Less than a week after I tossed the Kenmore in the trash I took the girls out to look at new vacuums and compare. I'm not sure if Monica had mentioned offhandedly to anyone about my silly vacuum biting the dust, but I am sure people would have noticed the girls and I testing out vacuums at Best Buy, Lowes and Sears this past Saturday. Nothing in our limited $100 range even came close to my old Kenmore. Later that night a box showed up on our porch with sticker letters that read, "YOU ARE LOVED." As most know, the Dyson vacuums are pieces of art, well engineered, very highly rated, and expensive. I especially was drawn to the Dyson "Ball" vacuum, but I wouldn't even let Delaney try it out because it was way out of our reach. I was shocked to find in the "care package" a Dyson Ball vacuum for me. Someone gave it to us as a "random" act of kindness showing support for Monica and our family as we find ourselves yet again dealing with medical emergencies and the financial part we simply cannot bear alone. I was blown away. No matter how much love is given to us I still cannot believe the hearts of people around us and the love they give.
Monica just got back home from the abdominal and pelvic surgery she had Monday at Cleveland Clinic She has five small incisions on her abdomen that are very uncomfortable, but the "knifing pain" in her belly is gone. Her post-surgery demeanor reminded me of her Henderson surgery in Maryland where she awoke stating how great she was feeling. "No more black floaties" was one of her first statements. If you know Monica, you know she doesn't go to the hospital unless the pain is unbearable, and she lives at a five on a scale from one to ten. She found out last week in Maryland the pain she is having in her neck is her fusion hardware, and it needs to be removed. This is scheduled for just a month away on Monday, August 12th. Her fusion is beautiful which makes the hardware unnecessary. You can actually feel it poking and rubbing on the outside of her neck. We have no idea how we will afford the $3000 upfront deposit for this surgery (less than the $5,000 for her last surgery because it is not going into the brain but merely opening up her neck and head. I will have to take time off. There is gas. We will have to borrow Monica's parent's car since neither of ours are safe for distances. There are hotel stays and food. There are more prescriptions. It seems impossible. But we have been here before. We have always walked out of our tent and found manna. Even before Monica's trip last week God supplied in the nick of time things she needed to actually go. She made plans all along believing the provision would come. We move forward in hope and faith to this next challenge.
I am very hopeful Monica will be feeling much better after she heals from her surgery this week and gets the hardware out next month. My wish for her would be that she could walk around our beautiful neighborhood this fall while the kids ride their bikes. My wife looks great with short hair and wearing athletic clothes. She misses her freedom to walk or run or drive. I know she feels much like a prisoner in the shell she lives with day after day. As her husband I feel helpless. Monica is also beginning six months of treatment for a hidden immunologic issue which could explain and possibly heal her body of constant infections, flares of depression and manic behavior. She could feel so much better. Tonight she was on the phone fighting to get insurance to cover the injections, but they won't. We could try to cash pay, but realistically we can't. I know she paid a pharmacy in Georgetown $65 today for a scrip they compound for her neurosurgeon. It keeps adding up. I am quiet much of the time about how all this affects me. The bottom line is I just want this woman I desperately love to be happy and healthy. I want her to be able to focus on something else than this struggle to survive.
When I write on this blog, which isn't very often, I always try to come up with an analogy, so I'll use the old Kenmore and the new Dyson to represent the old and new Monica I'm hopeful for. As aforementioned, the old Kenmore never gave up after all the abuse it took much like Monica and all the pain and suffering her body has been through over the years. She has moments of despair, but I have never met anyone who fights as hard as she does to do all she can to live and love. We are blessed beyond measure with our new Dyson vacuum and the love it represents. We are stepping out in faith that Monica can get back to a level of pain that does not restrict her life so greatly. This may be a silly analogy, comparing a "sweeper" to my wife, but when I look at her tonight with her swollen belly covered in bandages, her lap full of papers and scrips, while she is talking on the phone making new appointments, getting new treatment arranged and already planning the details of this next tough surgery on her neck I couldn't be more proud or more in love. Everything that continues to threaten our lives is really fertile ground God's faithfulness. We live in this hope moment by moment.
Thank you from the bottom of my heart to whoever thought of a gift so special. I treasure it!
Posted by Monica Kaye at 9:37 PM
Tuesday, July 2, 2013
No man can estimate what is really happening at the present. All we do know, and that to a large extent by direct experience, is that evil labors with vast power and perpetual success- in vain: preparing always only the soil for unexpected good to sprout in. ~ J. R. R. Tolkien
Forgive my stream of consciousness. I cannot harness a complete thought today. Here's what my mind looks like.
I must get a shower. I haven't washed my hair in 5 days. It's gross. It's a sign you're slipping into a bad place. Not really. If they knew how painful it is to shave your legs and wash your hair they would understand. Hygiene is a high level problem. Actually, self care is important. Where's that article I ripped out of Oprah about self care and depression? I'd give anything to have someone give me a pedicure and wax my eyebrows. Somehow I climb up on the bathroom sink and tweeze for fifteen minutes. This is my happy place. It always has been. Focusing on one little part of my face I can control. My shoulder pops out, and I am jolted back into reality. Monica, get into the shower.
Okay, not really, just lay down for a minute and rest your neck.
I must pack a bag for my trip. I get all my meds together. I email Dan to pick up two at the pharmacy tonight. I put my favorite ratty hoodie in the wash. I begin a list of things I need to talk to Dr. Henderson about. I find my CT disc. I email Dan to print my boarding pass. I get out my little shuffle. I log onto itunes to make a new playlist for flying. I love Need to Breathe's Washed by Water. I hate flying. I plug in my Kindle to charge. I turn it on and read a chapter in Fresh Wind, Fresh Fire. I think about my day tomorrow. I get online to try to estimate cab fare. I realize I am definitely going to have to use the metro. I try to remember how to use the metro. I create a little word notepad document for myself so I don't get lost tomorrow.
"Alarm at 455 am. Sweet "stranger" whose heart I love picks me up for ride to airport at 515 am. Flight CAK to DCA, 625-740 am. DCA, Yellow line to Chinatown. Switch to Red line to Rockville. Cab to MRI location at Shady Grove, 11 am. (I can't remember if going all the way to the Shady Grove station is actually better than Rockville. I hate the Shady Grove Station. Rockville it is.) Flexion/Extension MRI. Throw up discreetly in bathroom. Cab back to metro. Red line to Bethesda. Cab to Dr. H appointment in Chevy Chase, 4 pm. Wait. See Dr. H closer to 6 pm. Remember why you are doing this at all. Cab to hotel. Collapse."
Back on track. Things I must do. Write in the mother/daughter journal Delaney and I keep to one another. I always write her before I go anywhere. Finish thank you notes. Maybe I could bring them with me and write them at the airport. I am so behind on gratitude. Feel shame. Door bell rings. It's my friend picking up some books to borrow for her vacation. I answer the door. We chat for a minute. I wish I had actually gotten that shower. Feel shame. Her hubs and kids are waiting in the car. They are heading to the zoo. The zoo, a day before they leave on vacation. Is this how people live? God, why couldn't I have a "real" life?
Lay down for a minute and rest your neck.
Delaney makes the girls lunch. I nibble on toast and sip gingerale. I clean up lunch. I can't just wipe the table. I start to wipe everything in the kitchen. I don't know how I ended up on my hands and knees wiping the floor. STOP.
Lay down for a minute and rest your neck.
I have so many emails. I just don't have the energy to respond. I need people. My family needs people. I just can't decide how and when. I hate the necessary focus on self chronic pain and illness breeds. How do I keep my eyes on Him when I feel like someone is knifing me in my gut?
PRAY. PRAY. PRAY.
I don't wrestle against flesh and blood.
I balance all I know about what is attacking me with the truth He won't let me go. He will never let me go. He's preparing the soil for good. Only good.
I can do all things through Him. Even this. Especially this.
I'm getting in the shower.
(Thank you for praying for my trip and my surgery at Cleveland Clinic on Monday. My dear sister Rochelle is coming here to be with me. I honestly cannot wait to get as much of this disease as possible out of me. Dan and I lay here at night and continue to talk about our future in terms of HOPE. Even through manic days of suffering we believe continuing to fight for the best life is the right thing to do. No matter what the cost we will not give up on this journey. We are so grateful for your enduring love for our family.)
Posted by Monica Kaye at 2:09 PM