Today is an important day to me. It is the day I am supposed to be fully healed from this medical nightmare. Four years ago today I went into the hospital as I was becoming paralyzed with Guillain Barre Syndrome. During this hospital stay I was told it would only happen once and it could take anywhere from 6 weeks to 4 years to recover. Six months later when it happened again, my neurologist explained that it would definitely be about four years before my nervous system would be fully healed. The myelin coating on your nerves can only heal 1 mm per day max, that's about an inch a month.
At that point I mentally prepared for a four year struggle. The saving grace was that I knew each year I would be healing more and more, so I was hoping the process would be less painful over time. If you have ever had nerve pain before, you may be able to imagine what every nerve in your body healing could feel like. It was slow though - I would feel the nerves regenerating in just my upper arm for weeks or just my calf, not all over all at once. I couldn't regulate my body temperature, was having monthly drop attacks, and still randomly losing the feeling in a limb for hours at a time, but it felt like progress. I never could have predicted getting a tick bite in year two and entering a whole new medical nightmare.
This week has been heavy for me. My heart and mind are sad. I have tried everything I can think of and more to try to get healthy. Over the past year alone I have spent $50k on out-of-pocket medical bills and unconventional treatments. Nothing has worked. I have been busting my butt for 1,460 days waiting for today.... and now there is no end in sight. Can you imagine how that feels?
When I started this journey four years ago I had polycystic ovarian syndrome and Guillain Barre Syndrome. Four years of hard work later and I still have polycystic ovarian syndrome, still healing from Guillain Barre Syndrome, add to the mix Lyme, Ehrlichia, Babesia, 5 Heavy Metal Toxicities (the worst one Gadolinium was caused by the MRI's and I have 100 times the safe limit), 4 Mycotoxins, 2 forms of Candida, and Ehlers Danlos Syndrome to top it off.
The highly restrictive diet I am on is not going well. Now, with the way these diseases work - that is a good sign. This is what is so challenging on a daily basis in my life. According to these doctors you have to feel worse before you feel better.
If something is working then it creates a die off effect that can flood your body with endotoxins giving what's called a Jarisch-Herxheimer reaction. These reactions can be life threatening as they cause a serious drop in blood pressure and it can cause acute organ injury. But for the most part they are just brutal and you feel like you have been severely poisoned for anywhere from a day to months.
I have essentially been having a herxheimer reaction from this diet for a full month. I had one day where I felt good and didn't have to take pain killers. I wasn't strong enough to go for a walk or use my body but I could enjoy resting and could think clearly - if only I could figure out what I did to get that one good day.
This is a good visual to look over my past year and see which months were good, which were bad, and helps me analyze what has worked and what hasn’t... September was a good month and then I started Disulfiram and have been having a pretty rough time since.
Most days this month I have been in bed feeling weak and uncomfortable in my body. We have tried to go on a couple half day trips but both resulted in me not getting out of bed for two and a half days after, so my body just can't take activity right now. I see my morning clients from 5am-9am through zoom calls and then I am resting for the day. I have set little micro-deadlines for my book each day so I can handle it in small little bites and not get overwhelmed or behind schedule because I have some days that I just can't function at all. The symptom I hate the most is weakness - I am not used to being weak. It is very difficult for me when I can barely walk to the bathroom.
My migraines are daily, cognitive function has declined, my brain feels murky inside, night sweats are 5 nights a week, chills about 2 days a week, fevers daily, bone pain daily, tremors and drop attacks weekly, and I have been feeling down. I say this because I think there is a nutrient missing from my diet right now that is affecting my mood, I'm normally pretty happy despite this battle. My doctor agreed with me on that this week but he wants me to stay on course and try to tough it out as long as I can. He's concerned about what a rough month it has been physically so we are waiting on some blood tests to make sure nothing else is going on.
This is just one of many protocols I have been on in the past two years of this feeling worse before you get better. I am running out of steam. I am so tired of feeling worse in hopes I can be back to normal one day. A really giant part of me wants to stop the battle and surrender. Four years is a long journey. I was in tears last night thinking about it all but as soon as I started thinking about these last four years, I started thinking about my dad's 15-year battle with brain cancer. I don't know how he did it. I don't know if I am strong enough to follow in those foot steps, but I grew up watching that battle and it makes me feel like I have to persist.
This whole time I have been hoping to figure this all out and heal completely so I could share the journey and at least one person won't have to suffer as much as I am. At this point, I don't know that I am going to figure this all out.
The layers of having so many health conditions on top of one another makes it difficult. My doctor has already told me that he doesn't know what to do and I have researched for hundreds of hours to try and figure things out, and I am at a dead end too. He says he is not ready to give up but for now it's a waiting game to see how this diet goes and see how the blood tests come back - it doesn't feel like a promising future at the moment.
Have you ever had to sit with that feeling of not knowing whether to hope the blood comes back fine or hope that they find something? I have had that feeling often in my life thinking well if they find something then at least we can treat it! But then I got diagnosed with babesia on my birthday and learned that some things are incurable - so now I just sit and wait with an empty mind.
Despite how difficult this journey is, I still believe that everything is working out in my favor. It helps that my doctors remind me of that all the time too!
As a wellness expert I have learned more about the human body, the mind, stretching, nutrition, healing and natural remedies than I ever would have learned in a certification. As a human, my compassion and empathy has increased significantly. I have learned to set boundaries and to care for my own needs better. I have learned a lot about friends and family - and humankind in general.
I am grateful for the relationships I have with the amazing practitioners that have helped me like Emily Greenstein and Eric Dermond. I have done a lot of deep trauma work to make sure nothing lurking in my subconscious is unhealthy which has helped me forgive and heal from old wounds.
Some days I wonder where I would be in life if I was healthy, but I have met some wonderful people and had some amazing life lessons that I never would have learned if I wasn't on this journey.
Today I want to let go of the past four years. Release the Guillain Barre Syndrome Journey and start fresh. The four year struggle to recover from Guillain Barre Syndrome is over. Today is a fresh start and it is time to begin again with new hope and a new vision of healing.
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