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Ugh, where do I start? So, on June 7,2024 I had what is called a TIA aka mini stroke while I was sitting in my car. Little did I know my life was going to change forever. I truly thought my life had changed enough by recent life events, but I guess I am still on the life change schedule besides going through “The change” at my tender years of 49. No comment from some of you!
Well, as it turns out I was truly having a stroke and thank goodness for the sweet stranger I saw in the parking lot who helped me stay calm as much as possible and not lose my shit. I made it to the hospital and was taken in right away. They gave me an IV and a bunch of bloodwork. I had a cat scan and boy, that was an experience in its own way. I’ve had MRIs done in the past which I remember it making me feel cold. Umm cat scans, definitely not cold. I felt like I was peeing myself which I wasn’t warned beforehand that it feels like that! I can do a stand up comedy show about that experience. All in due time…
After they read the scans, the ER Dr came to me to speak to me about what they saw. The Dr proceeded to explain to me about something very rare and he felt he needed advice from another doctor and radiologist. He then proceeded to tell me there’s a disease called Moyamoya and asked if I heard of it. I said that sounded like a Hawaiian or Hispanic food dish. Maybe a Mexican taco. Anyway, he said it’s a one in a million type of brain disease and it looks like that is what I have. Ummmm what!?!! He also said to not search Dr. Google. You know I did as soon as he walked away. ♀️
I can’t even win $20 on the lotto and yet, I have a one in a million disease? Wtheck?!?!
I think I should have played the lotto more often.
I was admitted over night and checked up on multiple times throughout my stay which I was no longer in the hall but shared a triage room with 2 other ladies. I felt bad that I had to eat in front of one lady who was there for some bowel surgery or something and believe me eating food was the last thing on my mind sharing that space. Poor lady and my poor nose.
I was released in the morning and went home. Yup! That quick. The specific ER doctor was no where to be found.
So, I followed up with my PCP who said she’s never met anyone with Moyamoya and she will need to do research as this is a very serious and rare disease. ♀️
As the week went by, I was doing well with my diet and my medications to keep myself healthy as I can and welp, on Father’s Day I had an episode at Walmart my second house or Friday night entertainment as living where I do is not very exciting. I became the Walmart attraction.
I this time felt the numbness on the right side and was talking like I was a young 21 year old drunk swearing I was in control and never drank. We’ve all had those days at least once in our lives. The scary part for me was my daughter and granddaughter were with me and when she called my mom and sister on the phone they heard me go down hill. Hearing my family cry out loud broke my heart. The 911 operator told me since I was breathing and attentive they had other emergencies that were more priority
As it started to really go downhill Abby called again and finally the ambulance came. They checked my blood sugar and it was 58 and they said the medications I was given from the hospital was an overdose of diabetic medication. Oh yeah, I also found out I am type 2 diabetic on top of the Moyamoya diagnosis. How Fn lovely, right? Well, Moyamoya is where the arteries from the heart to my brain has narrowing and the blood flow is blocked where it can cause the oxygen and blood to not go where it needs to go. Look it up as it’s a son of a jerk disease.
I took the ambulance this time and said F it! I won’t drive with my daughter and granddaughter in the car in this condition.
Now over a month later I have been doing fair as far as no episodes, no strokes, and blood levels are in good health and condition. I am very tired and get some numbness here and there but I am
doing my best to continue working and taking care of my family.
I finally got health insurance which honestly is not the best but it’s something. The BIG problem is none of the hospitals that have neurosurgeons take my insurance. I need to be seen and I finally today heard from an expert doctor at Stanford (California) in Moyamoya and is willing to help me but I need to get my insurance to do an exception to the out of network insurance claim. Even if they do, I am responsible for the deductible and 40% of the procedures. I am told I need two brain surgery bypasses, place to stay while having a second brain surgery, follow ups while healing in California for about 3 weeks. I will need between 4-6 weeks out of work and hopefully no physical therapy for any loss of motor skills. I need to figure out my expenses and finances as I just became self employed consulting in my Aviation Industry before all of this happened.
I don’t know what to do as I don’t qualify for Veterans’ spouse benefits from Josh being in the Air Force and I never ask for help and especially financially. I am always hustling as a lot of you know. If it’s not aviation parts, it’s aviation jewelry, or empanadas. If you read this far, I appreciate it and I hope I at least made you chuckle a little as I have to admit, making myself laugh at myself has helped me some to get through all of this.
I have gone through a lot these few years and truly some of the best part is becoming a Glamma to my granddaughter Zahara. After becoming a widow with losing my husband, my kids’ father I thought that was the worst of it. Now, I need to get through this as my family is everything besides God being number one. I am putting my tail between my legs to do this gofundme and I’ve been fighting with myself to stop being prideful. If you can help financially, I am grateful and humble. If you can only share with others that is appreciated also. If you can only pray for me and my family, that means the most to us.
Thank you so much and God Bless You Always.
https://www.neurosurgery.columbia.edu/patient-care/specialties/moyamoya-center-excellence#:~:text=The%20Columbia%20University%20Moyamoya%20Center,and%20children%20living%20with%20Moyamoya.
Veronica Blackshire-Averill
Organizer
Veronica Averill
Organizer
Oak Harbor, WA