I need your help. Please share widely! I’ve been listening to research podcasts related to Traumatic Brain Injury. I sustained a life altering TBI almost 11 years ago. Back then, nobody knew the significance of the symptoms I presented with. I was repeatedly told, “You just have to wait until more research is conducted. We know less than 5% of the human brain.” I believe that time is now. My life is STILL drastically impacted by my symptoms.
In 2012, after I finished my thru hike of the Pacific Crest Trail, I was on my death bed. I truly knew I was dying. I smelled like death. I looked like death. I embodied death. I emailed my Mom a complete list of my symptoms which I titled: “Symptoms AKA Dying.” My Mom desperately circulated my email to everyone she could think of in the medical community. I was sent to Dr. Pejman Cohan, a leading Neuro Endocrinologist. He put me on an experimental neuro-steriod (a form of Human Growth Hormone) which I self inject every day. Over time, my TBI symptoms decreased (I was no longer on death’s doorstep) but they have NEVER gone away and my life is 100% affected. I still have all of these symptoms, but with the new groundbreaking research being conducted I believe there are people out there who have the answers.
Doctors have always told me exercise is non-negotiable. I intimately know and feel the positive effects of exercise on my TBI. In 2014, I heavily researched leading scientists in TBI and sent out over 30 emails. Knowing the positivity of intense activity on TBI’ers, I offered myself up to science while I would thru hike the Continental Divide Trail (a 3,100 mile trail). I wanted to understand exactly what was going on under intense physical stress. If that meant being followed by a team of scientists, having my blood drawn, being tested in towns… I was all in and wanted to find answers. My email circulated far and wide (Japan, Germany, Etc). I got many replies, the majority expressing interest but having a lack of funding among other variables.
I am the most positive person I know. Even though my life is DRASTICALLY altered because of my symptoms I don’t let them define me or my crazy adventures. I laugh constantly, I dance, I sing, my positive mindset it bulletproof. I’ve hiked over 11,500 miles in 4 years among many other sever endurance activities. It’s incredible everything I’ve been able to accomplish in my depleted state of health. Just imagine what I can accomplish if felt good! I get giddy just thinking about it! In the past 11 years I have never physically felt well. I believe there’s enough research now to get me to that point.
Will you please widely share this?! I know there are folks out there with information on brain levels and their correlations to my symptoms. I would love to feel “normal.” I would love to feel “good.” I would love to be studied so I can help others who experience similar ailments. We can do this… TOGETHER!
Here’s the email of my symptoms I sent to my mom while on my death bed in 2012. I still present with ALL of these… ENJOY!
Text in Red is current. Text in black is the original letter sent in 2012
- Inability to keep down food
- Not all the time now.. approximately every 3 days.. if not every day (for past 4 months) *While on the PCT I couldn’t keep food down and I still had over 1,000 miles to finish. I switched to a liquid diet because that was the only thing that would stay down. I would eat, get very nauseous, tell my stomach it was an iron wall, throw up, tell my body how proud I was of it getting me so far, tell myself I felt wonderful and then will myself onward to Canada. After finishing the trail this persisted for months. I met with Dr. Stan Hom whom tremendously helped and SLOWLY I was able to reintroduce solid foods through Juicing, supplements, and protein powders. He is a humble genius with a positivity and vibrancy that radiates!
- “light headed” stomach
- not my head.. just easiest way to describe
- Nausea – Different from “light headed stomach”
- Loss of appetite/ hardly ever hungry
- When I do get hungry I’m STARVING
- 3/10/17 The past 2 months (after having my wisdom teeth removed) I’ve had SEVERE stomach pain which leads to nausea and the inability to (sometimes) keep food down. I’m not hungry. The pain is so intense I fall to the ground rocking in “child’s pose” (this is the most comfortable position).
- Double Vision
- Blurry Vision
- Inability to focus clearly on things
- Sometimes my vision goes completely bonkers (the entire world shakes and moves… no matter how much i rub my eyes it still stays.) This IS NOT “spinning” this is everything shaking (my eyes HURT REALLY BAD when this happens too)
- Pain behind my eyes
- Extreme pressure in my eyes
- Eyes just overall hurting
- Shooting pains in my eyes
- Grey floaters EVERYWHERE in FOV. I ALWAYS see floaters ~ 5-20
- Bright flashing lights (as if I’m seeing stars without the lightheadedness)
- Occasional Blue flashing lights (also seeing stars sensation)
- Get light headed easily
- Loose balance VERY easily *This has gotten MUCH BETTER but when my head pain increases or I’m in “Seizure Mode” my balance is severely impacted
- Fall into things often
- Pressure in head (starts in middle and expands outwards)
- Constant Headache (24/7) NEVER falters to leave ~ 6 on pain scale EVERY day
- Sharp shooting pains like ice pick stabbing
- Ringing in ears
- Sharp stabbing pains in ears (feels just like its about to rupture) only lasts seconds then its gone (brings me to the ground)
- complete loss of hearing (only lasts seconds)
- “under water” muffled hearing (sometimes will last all day)
- metallic taste in mouth
- sometimes will go completely numb (Not my tongue.. just my jaw and teeth etc and lasts days)
- Tightness around my heart
- Tightness in chest cavity
- hurts to breath (feels better not to but I now to live I must so I take REALLY short breathes)
- REALLY SHARP STABBING pains in chest (brings me to knees)
- Very fast heart rate. Being a professional athlete, hiking ~20-50 per day It should be spectacular. When I jog, my HR can be upwards of 180BPM (you can powerwalk faster than my jogging pace)
- During orgasm Loss of hearing (Complete loss) Can last up to 15 mins
- During orgasm Loss of vision (complete loss) Can last up to 15 mins
- still very high sex drive
- Like to stop breathing (it just feels better) partner will realize this and remind me to breath…. still feels better not to though
- shake for a long time after can last up to 15 mins
- after orgasm I’m pretty much a basket case… I feel fine I just cant see or hear… I’ll ask my parter for his hand so i know im not alone
- Inability to remember things aka Memory SUCKS *100% improvement since Omnitrope Injections YAY!!! My memory is REALLY GOOD!
- Inability to stay focused for a long period of time. (need a lot of breaks if mentally tasking) * Mostly 100% improvement since Omnitrope Injections
- Takes me a long time to “problem solve” *Mostly 100% improvement since Omnitrope Injections
- Sometimes I go to retrieve info and itll be there other times it will be gone *Mostly 100% improvement since Omnitrope Injections
- The possibility of going back to school is zero right now. There is no way I would be able to keep up w the tasks or work. I failed out of last semester and I tried the hardest of everyone. I studied my ass off. I met w my teachers in office hours all the time. I had note cards, note takers, recordings, color coding, everything… and I still failed out because I was unable to retain information. I’m a fucking straight A student… now I get F’s… and I try harder than anyone I know.. it’s just not in the cards for me anymore. I continue to deteriorate in this aspect of my health as well. *My brain words MUCH differently than it did Pre-TBI. My ability to problem solve, memory, focus, etc is almost back to where it used to be. With the exception of remembering certain types of information
- I start feeling “funny” – it feels like an excess of energy within me. Exactly like being in an electrical storms and the air is so hyper charged your hair stands at attention
- My right fingers start going numb and that progresses up my arm and into my jaw/face
- metallic taste in mouth
- double/blurry vision
- I smell smoke (when it’s not there)
- I feel very nauseous
- Inability to converse/ slur words/ cant talk
- My feelings and emotions are hypersensitive
- I don’t remember anything during these periods except my INTENSE feelings
- Different types of seizures:
- catatonic, just suddenly am not there accompanied with lots of drooling
- Grand Mal, whole body violently shaking. Will fall off beds, couches, etc and uncontrollably repeatedly hit my head on the floor
- NOT NORMAL SEIZURES! Can have 100’s in an episode which is why I call it “seizure mode.” Can last as long as 6 days.
- Had surgery in 2016, anesthesia induced seizures lasting 4-5 days, transported via ambulance to UCSF Neuro Unit for 3 days with no answers, transferred back to Fresno via ambulance still having unrelenting constant seizures.
* It makes sense that this has gotten 100% worse in the past 2+ years. If my hormone, blood, etc levels have been out of whack 11 years and cell death keeps occurring it makes a lot of sense to me that full blown seizures would manifest as a direct correlation of my levels being off for so long
- Always freezing *has gotten substantially better since Omnitrope Injections
- Cold sweats
- One hot hand one cold hand
- SEVERELY swollen legs (from knees down) beginning within 30 mins of awakening
- Phantom shooting pains all throughout body that last seconds then disappear
- Joint pain (all joints ALWAYS hurt) *has gotten substantially better since Omnitrope Injections
- Extreme Fatigue (ALWAYS tired) *has gotten a little better since Omnitrope Injections, need 10-12 hours of sleep per night or I’m completely wrecked and incapable of life and “pay for it” for days after. Sleep is NOT an option for me, naps are frequent
- Muscle fatigue even when I don’t do anything or when I do to.. it doesn’t matter on my activity level *has gotten a little better since Omnitrope Injections
- Hurt to the touch.. I don’t know I do hurt until someone touches me then it’s like I’m being stabbed when in reality its hardly ANY PRESSURE AT ALL
- hiccups (about 20 sessions a day) only about 3-7 actual hiccups per set then they leave *Much more persistent and severe when doing physical activity
- Yawning constantly
- bruise easily
- Takes FOREVER to heal *Will get horrendous cold sores that last 2+ weeks despite overdosing on the largest amount of Accyclovir in hopes of “kicking it’s ass” and having an endless supply of Abreva on it. Will 100% get a cold sore if out in the sun (with a hat on) for 10 mins or more without sunscreen (30SPF+) on my lips. THIS IS NOT NORMAL!
- If anyone around me is sick I’ll pick it up and it will last a million times longer than theirs did
- “seizure” activity. only happened about 10 times…. my entire body shakes uncontrollably.. i can hear and see but i dont want to respond. I normally do not i just let it take it’s course.. only time I have replied during an episode was when someone around me said they were going to air lift me out and call 911… I tried w everything i had and was able to tell them w conviction that i was fine and they better not call 911.. since ya know.. i hate doctors and it had happened before i know it would go away shortly after… always VERY tired and fall asleep after these episodes *had increased a million fold since 2014 and turned into full blown seizures with different types of seizing
- Break out in hives all the time/itch like hell
- Don’t numb for surgeries/ feel everything
- History of Melanoma (skin cancer) had 11 surgeries in 13 months and quit surgeries because it was too much for me to take anymore *Resumed surgeries, still don’t numb, feel everything!
- Left eye twitches
- Entire face twitches too (different from eye)
I’m sure theres more… but that’s all that I can think of off the top of my head at the moment… things go wrong all the time but I’m so used to it that it has become my normal. I just wait for it to pass then attempt to carry on w what I was doing.
Only things proven to help
- Being out in nature… Hiking aka backpacking.. the happiest I’ve ever been in my entire life.. despite being the sickest I’ve ever been in my entire life. My happiness was worth a million times more than feeling like shit.
- Smoking weed helps for keeping down food and being able to eat and have an appetite (however I can’t stand the feeling of being High) I just like not throwing up
- Drinking makes everything feel better. I don’t have to be drunk. Just a couple beers.. but everything stops yelling at me. My body feels better. Not completely.. just my senses are dull so in return I don’t hurt nearly as bad. My stomach feels better, so does my head.
- I know smoking and drinking aren’t good for you so I try not to.. but sometimes I NEED to.. everyone deserves a break from feeling awful.
- I started taking RSHO CBD Oil (Gold Label) late December 2016… I’ve been seizure free since 3 months! The longest stretch since 2014! YAY!
- I don’t drink nearly as often as I used to. It upsets my stomach WAY more than it used to!
MY THOUGHTS TO YOU
None of these things last all the time. Everything is random and intermittent. There is no
rhyme or reason. I could have sharp “ear rupturing pain” 15 times a day for 3 days then not again for a week.. then again for every day for 2 weeks. Everything is just random and intermittent.
I feel like shit. I forget what it is like to feel “normal”. I haven’t felt “healthy” since my Traumatic Brain Injury when I was 15. Everything has gotten worse. I continue to feel terrible. I stopped telling people all together because there has been nothing anyone can do. The doctors are stumped and have no idea what’s wrong w me or how to fix me. I’ve tried everything. I’ve been a lab rat. I’ve done more tests than should be allowed. All w no conclusion… other than they don’t know how to “fix” me. I can’t stand doctors. I’ve learned to hide how I feel. After feeling like death for so long there comes a point where you can either feel sorry or start living what little life you do have left… because in my honest opinion I am dying.
To be clear.. I am not depressed. I do not think this is a bad thing.. it simply is. I accepted a long time ago that I was going to die young. After the TBI and no “cure” for that then after getting skin cancer melanoma and having 11 surgeries in 13 months and not having the numbing agent work on me and being able to feel EVERY single slice during surgery just as if they didn’t give me a numbing agent at all.. I accepted that I was going to have a short life. I’m okay w that. I honestly am. I have a different view of death than most people. It happens to us all. So no matter what we feel like we still have to live.. and I mean really LIVE the life that we have while we have it regardless of the way that we feel. Life is very precious and it is a gift. I cannot stand by and let my “sickness” rule my life. If I want to do something I am going to do it. I will walk from Mexico to Canada on a broken foot… and all these symptoms.. switching over to completely a liquid diet so I can continue to keep hiking. Because this is probably the last chance I will ever have to do something like this. And I damn well am going to do it.. even if I die in the process. At least I will die doing something that I love… being somewhere I love… knowing that even through all this pain and extreme discomfort I got myself here. I am a fighter. I am not giving up.. but should anything happen out there that I would be okay w dying because I have experienced such an amazing thing.. and to be frank.. It would be such a relief to be out of the misery that I’m constantly in. I wouldn’t trade my experience for the world because they have made me the person that I am and I have been blessed w being able to help so many people out there.
But just to recap.. after feeling so unhealthy and just overall terrible health wise… with no relief and only getting worse.. I honestly believe I’m dying. I don’t know how long I have.. I could go tomorrow or live another few years.. but I do know that I have been blessed to live this long despite how I feel. I have no regrets. If I want to do something I’m going to because life is too precious to “do it later.” I want to travel and see the world while I still have the chance. I want to experience as much as I can, while I can. I WILL NOT sit in a hospital and be a lab rat any more. That has never proved to get me anywhere except provided more questions that the doctors do not have the answers to. Other than.. “maybe itll get better w time.” This is not true. I have only deteriorated health wise. However, my mental state has gotten much stronger. This life is what you make of it and I’m determined to live mine to the fullest. I am capable of doing what ever I set my mind to. I have already proven this by hiking 2668 miles from mexico to canada in some of the most rugged back-county in the US. In the physical state that I was in.. there was many and I mean MANY times where I thought I was going to die out there just because I was in such poor health. But I kept going because I had to prove to myself that I could finish this hike. Mind over matter. You can do anything you set your mind to. And I was set on finishing.
I am thankful to have been given the opportunity to experience so much already.
All in all I would love to be able to feel better. I would love to feel “healthy” again.. what ever that means. I would love to not feel sick. To keep food down. To not have a raging headache 24/7 for 6.5 years. To not hurt when I’m touched. To not have vision problems. To have my brain work normally (how it did Pre-TBI) To be able to smile and not be masking the pain. To be able to really tell people how I’m feeling. (I never can because it only makes people sad when they ask for the truth and the only thing you can report is that you feel like shit) No one wants to hear that over and over.. hoping that youll say something else then only feeling pity and sorry for you. I don’t want pity. I don’t want to be looked at like that. I just want to feel healthy.
All of this is wishful thinking. I do not think that there is anything that will work. I do not think that there is anything that will help. I’ve tried journals of symptoms and food logs and everything known to man.. no one has found anything to help. No one has found out what is wrong w me… and I have progressively gotten worse. I am not going to stand by idly and let my sickness consume what little life I have left. I am going to live…
If there is someone out there capable of finding out what’s wrong w me then that would be the most amazing thing ever.. but if there isn’t.. and there hasn’t been.. then I’m okay w that. I just want people to know that I AM OKAY. I will be okay. It just sucks feeling quite literally like death. But I refuse to let it dictate how I live the life that I have left.
I adore my life and how I’ve chosen to live. Even though I haven’t been able to have a normal job in over 11 years because of my poor health, I LOVE my life. I continue to be the most positive person I know. I dream BIG and often complete my crazy endeavors. I started a non-profit to GPS Map every trail in the High Sierra and provide all GPS Tracks, Elevation Profiles, and water sources free to the public. If I could, I wouldn’t change anything that has happened to me. It’s made me who I am and I am wholeheartedly in love with the life I lead, the people I’ve been able to touch, and the love and positivity I share with the world.I do believe there are scientists out there who have answers. I DO NOT like drugs. I don’t want to suppress the symptoms. I want to address the underlying problems and fix the source. I’ve accomplished amazing feats in my life. I’m a sponsored professional athlete who pushes her war-strewn body to the brink. I’m the biggest proponent of having a positive attitude. You CAN do anything you set your MIND to. Help me find the right people so I can feel GOOD. Please share!
With love, laughter, and the happiest of trails,
Sara “BloodBank” Fry