I want to begin by saying, thank you. Thank you for listening. I appreciate each and every one of you that have reached out, had my back, and just listened after the awful experience I had last week with the eye specialist.
I want to prepare you though, what happened at the eye specialist last week was NOTHING compared to what happened when I saw my neurologist this week.
Disability. That has been the hardest word for me to say and admit, since I was diagnosed in January 2022. I thought if I said I was disabled that I would be disabled. For the past year I have tried so very hard to continue on with my life as if nothing has happened. One day after work, as I drove home, barely able to see, body vibrating, dragging my left leg, and completely off-balance, I realized that I… have a disability. This disability has influenced every part of my life, since I was diagnosed. Over the past five years I have worked incredibly hard to build up my cleaning business to become the number 1 cleaning service in my town. I am reliable, I am meticulous, and I am fast. I knew that I had to let some of my clients go so they would get better service from someone who wasn’t as unreliable as I am now, since being diagnosed. I have always taken great pride in the fact that my clients know that when I say I’m going to be there, I am there. I also knew I had to let go of my clients, because I had no quality of life anymore. I would go to work and come home so exhausted, in so much pain and so out of it that I would sleep for the next 48 hours. In the past year, I have been unable to do 3 days in a row of anything and that includes just getting out of bed. I have found that my max is 2 hours of increased heart rate before I need to rest and recuperate for at least 24 to 48 hours. That includes picking my children up from school. Making dinner. Cleaning the bathroom. Things I cannot do as fast, as well or as regularly anymore.
In March I got the call from the government and I had officially been denied disability.
When I made my claim 3 months ago, my neurologist said that he thought that I may have to switch careers, but I wouldn’t have a problem finding work. Which is absolutely bonkers! A neurologist that has met me twice for a total of 30 minutes and the doctor that told me I have MS over the phone in 4 minutes, feel like they know my life well enough to assess what I can, and cannot do on a daily basis. I guess the government thinks that I am Boxer from Animal Farm! Someone that will work and work and work until I die and get sent off to the glue factory! Spend every day working, so that my life is shorter, my weekends are spent in bed recovering, and my evenings are spent sleeping off the symptoms that are exacerbated by working! No wonder why people are angry with our system!
Even though I knew I would probably be denied, it was still pretty emotional. Feeling like you’re a burden on your family is NO fun!
I had 3 months to appeal. I made a doctor’s appointment and figured out what steps I needed to take in order to best fight for my rights. My MMBesty reminded me that I am the daughter of Kathy Castle! Warrior, MS fighter! With that thought, I made an appointment with my Neurologist.
Here’s how it went… I had to park quite far away from the MS Society’s entrance in the Kelowna General Hospital. It was hot out, I had just driven over an hour so my arms were like noodles, I had to walk far, and when I got in to the office, my left leg was dragging. Immediately, he pointed it out and said, “that’s new. Why is that happening?”
I explained that when my body was fatigued, my left leg started to drag. He said there was no reason physically that that should be happening. He did my 6 minute assessment… tapped my knee with the hammer, got me to press on his hands, touch my nose to his finger, and flex my foot. His 6 minute assessment led him to the conclusion, that I’m fine. Except those weren’t his exact words. His words were…
Kristin, I understand that you feel like these symptoms are happening to you. They are not. I’m not saying you’re making them up, I’m just saying that they’re in your head. I have a TON of patients, mostly high functioning women like you, that can’t deal with their diagnosis and put up these blocks in their minds that make them think that they have these symptoms. But you don’t. I think that you suffer from depression and medication would help you deal with your diagnosis better.
The vibrating in my body was so intense that I had to put my hands flat on the table to keep my balance while sitting in the chair. My body temperature rose a few degrees as well. I stared at him. I must’ve looked like one of those crazy high functioning women, that know how to advocate for themselves because he went on…
Kristin, I have your MRI here from January. You have NO new lesions on your brain. The lesions that are there have shown signs of shrinking. You are doing EXCEEDINGLY well on the Ritixumab infusion. I have very high hopes for your future. You see, there is no proof that the symptoms you say are occurring, are.
I took a deep breath. I said, “you do have proof. You have TONS of patients that are telling you what they’re feeling, you just aren’t listening to them. You believe that doling out anti-depressants as a first line of defence is the way to go. I see you for 15 minutes a month after my infusion, when I’m at my best. I see you in the morning when my cognitive function is optimal. I stayed in a dark room all day yesterday and slept so that I could have the energy to drive here today and tell you how I am doing. You say that it’s my mental health and yet you have had my MRI results for 3 months and didn’t think telling me would be beneficial to my stress levels.”
He said there’s absolutely no proof that the infusion wears off and that people with MS just think that there’s a crap gap and that it wears off. No proof. Except all the patients that take that medicine and report that it wears off.
But that’s all in their heads. In my head.
He told me that I need therapy, I told him that he denied me disability and I could not afford one. He said that he would prescribe me a psychiatrist so that it would be covered. I agreed because I will do anything to help myself feel better and there is absolutely no shame in asking for help for your mental health. The mind is a powerful thing and, perhaps I do have some mental health issues that could be worked through.
I left there really conflicted. That was 2 doctors in the span of a week they told me I was imagining my symptoms. My very real physical symptoms.
Since then, 2 important things have happened.
- I realized that I don’t need the doctor to be my friend. I don’t need him to even believe me. I know what I know. I will continue to read, explore, alternate ways of coping and exercising my muscles and my brain. I just need him to continue to prescribe my infusion for as long as it continues to work, order my MRIs, and read the results to me. That’s it. There’s no cure for MS. He can’t do anything more than he already is. Maybe it’s his fragile, male ego that believes because there’s nothing else that he can do… There’s nothing else that anybody can do. Maybe?
- My family doctor is on holidays. He has a female doctor filling in for him. She received my neurology report and called me. She called me to talk about my report and asked me if she could rewrite my letter for my disability appeal. She apologized for the way I have been treated by her fellow doctors. She said, “and here I thought that the hysterical female stereotype had been put in the past where they belong, but was sad to hear that these stereotypes continue.” I almost cried. With the relief of finally being listened to. For the first time since I’ve been diagnosed, I felt like someone from the medical community, took the time to look at my individual case and see me and hear me. And it felt empowering!
So here’s what I know. Most Doctors are dicks, but not ALL doctors are dicks 😂, I have no new lesions! I have someone on my side! Actually, I have a lot of people on my side, but one with an MD and who is willing to put pen to paper to have my back. I am hopeful that my disability claim will be approved and that the stress of not being able to keep my Kids in activities that they love so much, won’t be as big of a stress factor for me in the future. I am only 44. I have half my life left, I want to make it as extraordinary as the first half has been! I am hopeful that we are on the right path .
One dragging foot in front of the other 💛.
ENOUGH about me!!! Father’s Day is coming up and Ninja is our rock and we couldn’t make it through this thing we call life without him 💕. Over the years we have gotten him some pretty great gifts (if I do say so myself) here are a few suggestions that he wanted me to share with you for that special person in YOUR life!
I bought Ninja this UV Sterilizer for Christmas. He thought I was crazy, but every single person in our house uses it on a regular basis so I guess I’m not that crazy! 😂 This sterilizes your phone, your keys, your make up brushes, nail clippers, and you name it! They even sterilize Ninja’s glasses but unfortunately he still has to physically clean the smudges off the lenses. Did you read that Ninja? 😜
This Guitar Key Holder was a cool gift that I got a Ninja after our house was finished being built. As a music lover, and specifically a guitar guy, this keyholder is fun, definitely a conversation starter, and perfect for that music, loving man in your life!
Ninja was a bartender while we were dating and his love of making a good cocktail hasn’t diminished over time. I got him this beautiful Mixology Set that helps him concoct delicious taste, and cocktails… For me!
This Webber Bluetooth BBQ Thermometer has been a go to present for us for a while now. Ninja absolutely loves this thermometer and we have bought it for my Dad and his Dad in previous Father’s Days! This takes the guesswork out of barbecuing, hooks up to your phone so you can do other things while you BBQ, and it will make your man feel like a barbecuing stud!
Craft beer has evolved so much over the past few years! We have 7 craft breweries here in town! When we visit them, we love having a flight so we can taste them all! Now we can do that at home! I bought Ninja 2 Beer Flight paddles with glasses and now we can enjoy tasting different brews from all over BC, Canada, and the world!
Except this one! A Beer Sleeve will come in handy on the fairways, hikes, and when we go to the beach. Actually, now that I think of it, this will hold a few Caesars as well. 🤔 OK this one could be for me too. 😂
If your husband is like mine, he broke your spirit, and finally purchased a PS5 for himself! However, the console only comes with 1 controller and maybe you want to play too? Ha ha just joking I don’t wanna play but I do want to get Ninja a Dual Sense Wireless PS5 Controller!
I made this pork dish months ago. Ninja absolutely loved it! So I thought I would post it with my Father’s Day gift guide because this would make a delicious Father’s Day dinner! Super simple, 9 ingredients, you could put it with noodles, rice or fried rice and add any vegetable that is fresh and in season! This is a delicious alternative to expensive takeout, and can be made in less than 30 minutes!
Garlic Ginger Pork
Adapted from Foodie with Family
1 1/2 pounds boneless centre cut pork loin cut into strips
1 teaspoon salt
1/2 teaspoon pepper
1 tablespoon peanut oil
5 cloves garlic, minced
1 tablespoon ginger, grated
1/2 cup honey
1/4 – 1 teaspoon chili garlic sauce
1 tablespoon rice vinegar
In a liquid measuring cup or a small mixing bowl, whisk together the mild honey, chili garlic sauce, and rice vinegar. Set aside.
Sprinkle the pork strips with salt and black pepper then toss to distribute it evenly.
Return the pan to the heat and add in the garlic and ginger. Stir until fragrant, about 30 seconds.
Raise the heat to high and pour in the sauce mixture and bring to a boil, stirring frequently. When the sauce is very bubbly and has thickened, toss the pork back in and toss constantly to coat everything and reduce the sauce.
On Saturday we had dance dress rehearsal! It was completely different this year because each of the Kids only had 2 dances! It was a lot less stressful and way more fun to watch 😂. I had a great day sitting there in the theatre, watching all the dancers light up the stage! Ninja brought me an iced latte and for dessert brought home a chocolate Walnut Crunch from Tim Hortons! 10 years ago, they discontinued them. They were my mine and my Mom’s favourite doughnut! I don’t know if it’s just me but Mom’s 10 year anniversary is coming up a lot and everything seems to be revolving around that. Dad finally buying their car on the 10 year anniversary of Mom’s passing, me having to park at the beach by KGH that we went to 10 years ago to the day when Mom went into the hospital and never came home, Tim Hortons bringing back her favourite doughnut 10 years after they discontinued it on the same year that she passed, and the yellow butterflies! There is an abundance of yellow butterflies this year! I just really feel her presence right now. I know she was with us on Sunday when Ninja worked on outdoor furniture for the backyard, HBear worked on the yard and SBean competed in her final gymnastics competition of the season. I am so proud of her! She worked her butt off this year and overcame self-doubt, negative emotions, and her insecurity of being accepted. She killed it! Every competition she did a little bit better and every competition made her smile just a little bit bigger! Congratulations SBean on your 9th Place finish in vault, 7th Place finish in bars, 4th Place finish on the beam, and for hitting your goal of landing on the podium with a 3rd Place finish on the floor! She came in 5th overall, which was 1 better than last time and 3 better than the time before that! On Monday, it was a rest day. Even the dark hurt my eyes so I spent the day, evening, and night in bed wearing sunglasses. But it’s probably all just in my head 🤨.
2 thoughts on “MS Brain, Father’s Day Gift Guide & Garlic Ginger Pork”
Thank you so much for showcasing our SSPS Image here on your blog. Love the pork dish.
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I loved this blog. We have to be our own warriors when it comes to our Dr's. I'm still trying to figure my journey. But I'm not giving up. Thank you for sharing. I appreciate it more then you know.