Over 3 weeks ago I was gluten poisoned while on tour. With great sadness it happened in the town where Antioch University lives. I am a proud graduate of Antioch LA receiving both my BA and MAP from this amazing social justice school. My heart was full on the day the poisoning happened.
I take 100% responsibility for this happening.
Not that the restaurant could not have stepped up their game after I explained my diet restrictions, but I am somehow used to wait staff finding me annoying and that being the ‘accepted’ norm. I have always known eating out I am at risk unless at a Paleo - Primal restaurant.
I own my life so this outcome I take ownership for no matter what.
I started feeling bad almost immediately at the restaurant noting rib girdle pain, which is a symptom of Multiple Sclerosis (MS). I struggled with the MS rib girdle for many years until managing MS with diet and lifestyle changes.
By 8pm I was doubled over in pain and literally could not breathe.
My chest compression pain so great talking and breathing were almost impossible. I was scheduled to drive 4 hours the next day to continue the tour and somehow in the worst pain possible I did it. I stopped at travel centers and cried doubled over in pain several times believing it would eventually subside. Not going to lie upon arriving at my host home I immediately broke out into tears and literally could not find the strength needed to continue with this pain. I was now 20+ hours struggling to breathe and the pain was getting more and more intense with each painful breathe..
Off to the emergency room I go.
I told the ER doc my story of how food is medicine or poison in my life and that I suspected it was gluten poisoning. No matter what I said he believed I had shingles. Upon arrival at the ER they noticed a red mark on my chest which the ER staff identified as a rash. Even though I told them I had a heating pad on that exact spot and that is why it was read both the doctor and nurse believed I had shingles and it was a done deal.
I knew I did not have shingles & yet the staff made me feel as if I did not know my own body.
The nurse even came in and said I should request the doctor stopped all that he ordered because she was 100% certain it was shingles. Even though I once again pointed out the ‘rash’ was going away with every minute I was in the ER. She looked at it again and said no the rash was raised and not going away.
Who am I to know my own body? Clearly the ER staff is much smarter about MY body. WTF.
I wasn’t sure if I did not have a gall bladder issue though. My dad struggled for years and I wondered if this might not be a genetic weakness? So they ordered a CT scan and I requested no dye, which did not win favor with my doctor. Although he complied he clearly felt I was too smart for my own good.
At this time the doc asked me if I wanted something for pain. I shared my mom was a prescription drug addict and that I was not interested in a narcotic. He recommended morphine, which I clearly stated I did not want. The doctor also stated that ‘you don’t become an addict from 1 to like 4 doses so I had no need to worry.’
WTF is all I can say again. Somehow this doctor knows what number dose you become addicted to drugs.
Who knows what dose makes you an addict is my question? All I know is I am my mothers daughter. The nurse enters the room and tells me the doc called me “the lady with MS who does not take any drugs.” Which was funny because she shared a fellow co-worked who has MS was just diagnosed with breast cancer and she took out a pen and asked me how I did it taking notes.
Could this staff be any more confused?
I felt like an official line was drawn by the ER doc when the nurse shared his comments about me. Clearly he felt we were on opposite sides based on how I treat MS when I thought the goal of being a doctor was to help patients understand what was happening to my body and to listen to their concerns. Not to get drugs and dyes injected into patients and disregard everything they say. Now I was scared and wished someone was with me just to witness this and be my eyes. I did not feel safe, respected or protected in this ER.
Never once did anyone ask me if I took a vitamin or supplement. Not one single time and I take about 20 pills a day and have a daily healthcare routine they never learned or heard about.
The nurse put an IV line in which I thought was weird. Then she was getting ready to inject something into it. I asked what she was doing and she said “giving you morphine for pain.” I almost could not believe my ears. I told her I said “NO to morphine” and she showed me the order. Yes the doctor had written for morphine.
I refused now twice and once again the doctor has drawn a line between us.
My pain is horrific and what brought me to the ER. I cannot sit or touch anything with my chest and body on the right side from head to waist. I have not slept in days and I am close to tears feeling very alone and afraid. They come in to take me to the CT scan and I state I would like something for pain first. I am told I can have morphine or I have to go to the CT scan without anything because they are ready for me now and the new order has not been written yet by the doctor.
WTF. Narcotics or wait is what I am told. I walk to the CT scan hoping it will help the pain & thankfully it does.
Upon entering the CT room I see it is a tunnel scanner. I state I am horrifically claustrophobic and the tech tells me it’s open so there is no way to be claustrophobic. I beg to differ and F you for telling me I am fine.
WTF. Again this hospital staff telling me how my body works.
Screaming in pain and fear I endure a CT scan that lasts for about 8 minutes. I go back to the ER and wait another 20+ minutes before anyone comes in the room and addresses my pain or me for that matter. Eventually they give me a non-narcotic anti-inflammatory pain reliever that helps me in about 20 minutes. I had been in the ER for almost 2 hours at this point and I came in due to intense pain and finally getting relief.
All the blood, urine and CT scans show a healthy body. Nothing shows any signs of there being a problem.
ER doc comes in and tells me in life people can get sick and have pain for no reason. He believed this is what was happening to me. I shared my gluten issue AGAIN which the restaurant now confirmed could have happened and this doctor with conviction states that ‘no way could gluten cause this reaction to anyone.”
WTF. Are you kidding me? Do you hear me at all?
I then share that gluten poisoning took me to the ER about 5 years before. I had joint swelling and trouble breathing which happened on a day I flew across country so we feared a blood clot and I went to the ER. It was gluten poisoning and effected my breathing just like it was now.
This ER doc completely did not even respond to this information. It was like I did not even speak. Next he sends me home with instructions to decrease my fat and eat crackers, bread and grains when I am ready to introduce foods and when I take the 600mg of ibuprofen he ordered.. The nurse also recommends I get saltines on my way home so I don’t get a stomach ache
WTF. Are you kidding me? Is ANYONE listening to me???
I am so not surprised and yet surprised at the same time this is how our healthcare system would treat me. The #1 reason I don’t see a western medicine doctor are because of these conversations. Basically the complete denial that diet and lifestyle have a role in anything is what keeps me far from a traditional doctors office. Our lens is not even remotely close and I am not willing to fight about my healthcare with anyone. I am also not willing to engage in conversation with anyone who believes they know my body better than me.
I sent a report to the hospital which is Summa Health about this entire trip. I have heard nothing. Zero. Zip. I am now going to send them the blog post where I share with EVERYONE how I was treated and how poorly this hospital operates.
All this serves to do is make me more determined than ever to keep doing the work I do leading by example. To keep inspiring others to question the status quo regarding healthcare and the choices we make living our daily lives. My healthcare is FREE and accessible to all.
I am thankful my body tells me what it does not like.
I am also certain that this was a wake up call for me to not tour so long without a break and also to trust my gut when a restaurant staffer makes me feel like my eating restrictions are simply me being difficult and nothing more.
I know I was gluten poisoned, My body is healing slowly. I have stopped doing anything but focusing on healing and know that I can bounce back it is just going to take a while to heal.
Summa Health you should be ashamed of yourself. It is time to educate your staff about the power of food to be poison or medicine. I give you a zero out of 10.
How I am healing is by doing the following:
Slowing my role and focusing on ME
Listening to my body
Slowly, but surely my beautiful body is responding without drugs and any help from doctors, nurses or hospitals. Once again my healthcare is FREE and accessible.
Summa Heath you are a JOKE of a place where healing is far from reality. I would not recommend you to anyone.