This is a long story so sit back and relax and grab a coffee. As one would know as a larger person sometimes you do not get the same treatment from your primary as you would if you were healthy. Boy, didn’t I have lots of problems.
It all started over 4 or 5 years ago and I was consistently told to lose weight. Swelling feet, back pain, fatigue, and unexplained clumsiness. I was on heart medication, cholesterol pills and water pills. I had been diagnosed with edema, rosacea, hyperlipidemia, Parvovirus, Gerd…must I go on?
On Nov 27th, 2017, I took a new turn in my life and underwent surgery for the Gastric Sleeve.I am no longer on medications since my surgery. I went from 280 lbs to 165 lbs in a matter of 1 year. The journey was wonderful and I felt so good. One day I walked 20 miles and felt like I could do more. That same week I biked to work from Corinth to Bangor (16 miles) and then walked at the Relay for Life 15 more miles.
I started to go to the gym and maintained this weight for another 6 months.Soon after my return from New York (I was sent to work for a month) I started to fall more so much that I would laugh it off and say I was “starfishing” or blaming it on “carpet trolls”. I went from falling 1 -4 times a week to 10-15 times a week in a matter of a month. My peers would ask me if my foot was ok, as they noticed I was walking with a gait. I however blew it off and stated “It’s how I walk.” In the back of my head however I thought it is strange how I keep falling.
Around December of 2018, I started seeing a chiropractor and found out that I am actually favoring my left leg so much that I was misaligned. 70/30 right to left. My right foot was flat and I had a beautiful arch on the left. I was then referred to a back surgeon as I did display some bulging disks. After a few MRI’s and no more gym activity I was told that I had a pinched nerve and it would be a fairly simple surgery. WIth a long recovery.
On May 21st, 2019, I had my back surgery. I started to walk better at my 6 week appointment post opt and then things started to get worse when I returned to work in August. The falls increased to more than 100+ in the month of September. I made the hardest decision and grateful Wayfair allowed this accommodation. I stepped out of the management role and back into my previous position.
With the concern of a second opinion as my primary then referred me to a psychologist and referral to Acadia. The second opinion referred me to a neurologist and had TONS of blood work ordered. One of the tests that came back with concern was muscle and tissue damage.When I visited the neurologist they performed an EEG on me. This was done on October 16th on October 18th, I received a call from the doctor to come into the office. At that moment I was still at work and had to leave early to go. I thought “Wow this must be serious.” Little did I know how serious it really was.
At 2:34pm on October 18th, 2019, my life flipped right upside down. I was diagnosed with Amyotrophic lateral sclerosis ALS, also known as motor neurone disease (MND) or Lou Gehrig’s disease. I didn’t even know how to respond and held it together as I told my husband in the parking lot of his place of employment.
In a matter of 24 hours from the diagnosis our house went up for sale and we were house hunting for a more accommodating home, planning for the worse. I was set up with an ALS specialist in Brunswick and the new journey began. By the end of the year I had multiple appointments under my belt. I started voice banking and had a plan for a motorized wheelchair.
The month of December was one of the most blessed. An angel offered to buy our home cash so that we could buy a home that we found in Bangor that was fully accessible. The neatest thing about the house we found besides the amazing Angel that bought our house on Dec 13th, 2019 is the fact the house we found was not only across the street from where David (my husband) and I had our first date.
The house was the house my husband connected with a pastor and accepted Jesus into his life right in the living room of the house we wanted to buy.This house was fully accessible, wheelchair elevator, ramps, wide doorways, roll in showers, rails by the toilet. It was a dream.
On January 18th exactly 3 months later we moved into this home. On the 19th David shared our testimony with our church and on the 21st our life then changed again. My husband was laid off from his job, the moment before the opportunity to apply for the final piece of the puzzle, a van. With no job and no paychecks for myself due to paying for insurance and missing work for appointments. Then having my husband have to transport me to a manual chair at home to work to my motorized chair. So much energy is being used.I feel like I am rambling…….
What is happening now?I am maintaining 175 since my 2 year follow up. Darn wheelchair and no physical activity.We have a VAN! $500 out of pocket and still lots of blessings. I AM TRULY BLESSED! We ARE Blessed!
Two weeks before the world had ended I got to cross many things off my bucket list because of my awesome Aunt.I have been qualified for an in home caregiver and nurse. I was also told that because of the seriousness I could choose a nursing home. Heck no! Going to stay where I am comfortable.
On July 18 my 9 month anniversary I am officially qualified for life alert as it is dangerous for me to be alone. August 26, 2020. I am no longer independent, I have a caregiver with me 24/7. I have my life alert in case I am alone. My left arm is at 50% and my right is 75%. It is expected that I will completely lose my left arm and hand in 6 weeks.
I am expected to use my ventilator more than in the evening as I get tired quickly from using my voice. I will have my eye gaze system next week and soon my AI voice will be ready. I will be the next Alexa.
September 22, 2020. I have gone in to have surgery for a peg tube and a suprapubic catheter. Due to being very weak The surgery did not go as planned as there were many complications and I woke up in the ICU. After multiple hospital visits and near death experiences (Not kidding there were some close ones) I am now doing much better. I have learned that wounds do not heal as quickly when you have ALS and a DVT also known as a severe blood clot.
Once we think she’s this girl who has gone through so much and you’re right. I feel like that sometimes too. There are times I wonder how the heck did I survive all of this and not freak out. The only answer I can say is my daily journals that I post on my Tamurai’s adventure page. Educating the world about a disease that wants to take my life and I refuse.It is now March of 2021 and a lot has changed since I was first diagnosed.
I am no longer able to stand on my own, use my left hand, and occasionally depending on what I eat I may have a moment of choking. The lower part of my body is like a rag doll with no muscles just bones and if you pick me up I will just dangle. I am full of dead weight.I would love to continue to post here my updates of how I am doing. I know there is a lot in this one message but I wanted to introduce myself. I do have a whole page dedicated to myself where I journal about my daily life.
