My continued journey of healing

-------- July 2015---------


"I struggle sharing this pic with everyone because it brings up so many mixed emotions. Been here for what feels like a long time, but truth be told it's only been a day and a half. Got to see my baby tonight, it felt so good to snuggle for a few minutes. Hopefully I will get to get back home soon. Thank you for all the prayers and well wishes

————July 2016————



Sometimes I plow forward trying to forget last year. I try to stamp it out of my memory. But then sometimes I am just in awe at all we went through and that I am able to be healed and move forward and start with a brand new life!
Around this time last year I was in and out of the hospital as neurologists were trying to measure my brain activity to try and figure out what was going wrong. If I didn't have a seizure on the time table they wanted, they would induce one so they could observe it on the monitor. I had abnormal brain activity and damage to two parts of my brain. And inducing the seizures just made it worse. Frustrating thing is, the neurologists were still inconclusive about my results and were unsure how to help me. I felt so hopeless. All that time and money in the hospital, and further damage to my brain caused by the seizures, only for shrugged shoulders???

Time passed and I lapsed into the worst state of mental health I have ever experienced. Landing me in the hospital again for further observation. More seizures, more damage, more shrugged shoulders. For crying out loud could no one help me!? I vowed to never go back to EEG monitoring like that again.

More time passed and I began to develop a movement disorder that completely tore me down. My IQ began to drop drastically, and just living became the focus of my efforts. All hope of a normal life seemed to fade. I frequently thought "why has me life come to this? Why will I never get to experience life how I imagined it would be? What value as a person can I possibly feel like this?" I had given up. But my friends didn't give up. They were determined to find out what was going on. They helped me switch doctors, they set the appointment and everything. They gave me hope again.

After months of working with my new doctor, with much more trial and error and heartache, we finally found the answer of a bacterial infection in my small intestine releasing neurotoxins that were damaging my nervous system. And not even six months have passed since I have been healed from this and the infection has cleared up.

When I slowly came back to myself and my symptoms disappeared I realized I didn't want to waste another moment of my life.

I realized what a precious gift it is to live life and enjoy it and to serve others, and just walk and talk and be ME!

I never want to take my body for granted again. It is such a beautiful gift and I want to make the most of it. I want to push past the limitations of what I thought was possible for myself and relish in the accomplishments along the way.

Thank you for being here on this journey with me. Thank you for your encouragement, for believing in me. I use it to my advantage and it fuels my motivation and gives me more momentum as I push forward and continue to improve myself. My biggest hope in sharing this is that you can see how far I have come, and realize that you can do hard things too.

Much love to you all.

—————

---update: Feb 2017---


I still move forward, but I no longer try to stamp this experience out of my memory. There are so many others that are struggling with their health and life- and I can’t stand by and see them struggle. I can’t keep silent and pretend I don’t know what it feels like.
I have walked through the depths of terrible mental health. To give you an idea of what was going on, in such a short time I experienced:

non-epileptic seizures, intense paranoia, disassociation, panic attacks, Parkinsonism, chronic tinnitus, vertigo, severe insomnia, heavy psychiatric medication withdrawals, major depression, constant dizziness, functional movement disorder, severe short term memory loss, auditory and visual hallucinations, depersonalization, dyskinesia, chronic fatigue, seeing spots and lights, intense fiery brain fog that never let up

My brain waves from tests showed substantial epileptic abnormality. All the time my brain was firing off huge amounts of electricity at regular intervals and then would go through periods of substantial slow activity, not supplying the electricity needed to keep neurons firing at the usual pace. Something was wrong, but my first neurologist couldn’t tell me what. Because of my age and how many children I had, he told me it was from stress and that I should go seek counseling. Of course I was stressed, who wouldn’t be, going through all of that? I did go seek counseling- and glad I did! I learned how to deal with stress of my current situation. But counseling didn’t make my problems go away. In fact, they continued to worsen with each month.

I was in a state of confusion so much and when I would catch glimpses of feeling normal I would nearly jump for joy- only to crash back into the mix all over again.

And all the while not knowing what was wrong yet. All we did know is that I was fine if I didn’t eat any carbs, leading to an initial diagnosis of just a metabolic disorder. The carb free diet was really hard to sustain though and the occasional slip ups still had such terrible consequences. I endured this from July 2015 until late March 2016.

In April 2016 my new neurologist and I discussed the possibility of a bacterial overgrowth in my small intestine. If there is an overgrowth of bacteria in the small intestine, they release huge amounts of neurotoxic waste after consuming the carbs in your meal. So, maybe, just maybe, the intestinal infection could be causing the declining mental health.
Maybe it could explain all my other symptoms too:

-histamine intolerance
-lactose intolerance
-gluten intolerance
-fructose intolerance

-low stomach acid levels
-hypoglycemia
-elevated bilirubin levels

-terribly dry itchy skin
-daily outbreak of rashes and hives on my scalp, back and abdomen
-blood level vitamin and mineral deficiencies, no matter how much I supplemented and ate
-quick weight loss
-muscle atrophy
-intense joint pain

-always feeling like I was starving, but no appetite

I was having to deal with all the symptoms above. I felt like my mind and body was betraying me. At what I thought was my lowest point, I wanted to die. But truly at my lowest point, I wasn’t even aware of my surroundings, let alone my own thoughts. At my truest low point, I drifted in and out of a dissociative la la land- similar to what others experience with severe PTSD or post traumatic stress disorder. Truly, the worst hell I have ever experienced.

I was desperate to find answers. My neurologist was pushing for a third psychiatric evaluation and since she couldn't initially find a physical/neurological cause of my symptoms- she wanted to pass it off as all psycho-somatic. Which basically means my mind would be hysterically causing all my physical symptoms as a cry for help. I had heard of it before, but doubted that that was the answer for all my ill health. I had heard of psychogenic seizures, but psychological hives and low blood sugar levels, really? Something else was up.

I decided to try one last time before giving up. One last limb to walk out on before consigning myself to a lifetime of the psychosomatic label that no one knows how to treat effectively.  I knew SIBO is chronic, but that it could be treated with antibiotics. I thought: I have tried so many things, and I just want to give up. If this doesn't help, I'm finished fighting. I gave a good fight, but I'm at the end of the rope.

Holding on to my last little bit of hope with my neurologist,  I took the treatment everyday for a month. Halfway through the treatment the majority of my symptoms were gone. By the end of the treatment I felt like a brand new person. I would eat whatever I wanted with no consequences- except gaining weight! I didn't really even want to get my hopes up!

Because of the weight gain, I began to exercise! And then by last July I couldn’t believe I had transformed in such a short amount of time.

It really did work, and I was on the road to recovery.

I still can’t believe where I am today. Right now my brain and nervous system are still healing and so I experience the quirks of that sometimes. But I know that taking care of myself will only speed the healing process. The more I move and exercise, the more my brain will remember how to properly communicate with my body. The healthier I eat, the quicker my intestines will heal and I will have the vitamins and nutrients I need to thrive as a woman, wife, mother, and educator.

I am free. I am me. I am becoming who I was always meant to be.

God has brought me out of the fire of intense illness and disability and chose to heal me. But the survivor guilt is real, and intense. And I can’t stand by while others are still suffering with uncertainty in their life.  I’m not a doctor, a dietician, a fitness trainer, or a therapist. I’m not certified in anything yet- but I’m working to change that. That’s why I have chosen to go back to school to get a degree that can allow me to be qualified and certified to help my brothers and sisters who stand in need. My personal motto with coaching right now is to educate and lead people to resources and professionals that can work their magic.

Because I have been healed, because I have been changed: when I look at others suffering or in need- I not only intensely see them and feel their pain, but I see their potential. I see them healed. I see them becoming triumphant over their adversity. Whether that’s big or small.

My physical, mental, and emotional scars from that terrible condition are real. I still struggle with muscle atrophy and weakness on my left side. I still have a minimal jerk in my left foot at the end of the day. Sometimes I get so frustrated at how far my intelligence and memory has dropped.  I still have some healing to do.

But my hope is as real as my scars are. And that is powerful.

This trial has left me with a contagious and incurable condition called Optimism. Right now, right this very moment is a gift, and the future looks so bright. I can not control the wind, but I can set the sails.



Looking at me now, would you have ever guessed all that I have gone through?  Every time I meet someone new, I eventually wonder: should I try to keep this to myself? Is this experience really an essential part of me? The answer is YES. I need to own who I am. All I've experienced.

No amount of words could ever truly explain how devastating that experience was for me. But sharing my story can help raise awareness and hope for those still struggling. Not all of us have SIBO, but many of us are struggling with our health and wellness in this busy, fast paced world. I want to show others there is a better, more fulfilling way to live.

I believe with all my heart that God chose to heal me so that I could learn the healing process intimately and share it empathetically with others. I could have chosen to go on my merry way and keep it to myself- but that would be such a waste of precious knowledge and truth. I have to share it.

"Be who God meant you to be and you will set the world on fire."
-St Catherine of Siena

Until next time,
Madeline

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