That means it’s time for some Good Vibrations Gratitude.
These are the five things I am grateful for this week.
- Brunch with friends
I like brunch. But I like doing it the Mom way meaning we get there right when brunch starts, usually around 10. It’s a good time. The kids are ready to eat and it’s before the hipsters show up.
I also like that I get to brunch my way now. I prefer brunch is establishments that are not diners. Bryon loved diners and I am not a fan. I feel like diner food is not any better than the food I cook. I like to go to brunch and have something fancy that I could cook but generally don’t have the patience to.
Plus, I don’t like diners because many of them are small and I am claustrophobic. Now I know many other establishments are small. But I can deal with my claustrophobia for fancy brunch. Like, I can tolerate being in a small space but not for generic food that I could make at home.
Bryon was always more of the breakfast fan than me so he would win. That and because the issue wasn’t important enough to me. I am glad I went along with it because diner breakfast always made him happy.
I guess of the “perks” of widowhood is I get to do whatever I want. It’s bittersweet, really.
And Kimmy Gibbler has the same attitude about brunch so we had brunch at a local place called Savoy Taproom.
I had the adult ice coffee with aquafaba and creme brulee French Toast. I had no clue what aquafaba was but the waitress explained it to me. It’s apparently a vegan alternatives to egg whites and apparently putting egg whites into iced coffee is a thing now. The egg whites create the froth. I tried it but I made it clear to the waitress that I was not a vegan. For some reason, I felt that that was important and that the waitress wanted to know.
I always considered myself an iced coffee snob and I had no clue. *shrug*
- Advocating for MS
For the second year I got the honor of advocating for people living with Multiple Sclerosis at the New York State Capital. I am not going to elaborate on that because I will be writing a post about that. I have several friends with MS and I am thankful that I get an opportunity to advocate for them.
- Reese’s Peanut Butter Cups
- Signs from Heaven
I know I spoke of Bryon’s Valentine’s Day sign that came in the form of Vagisil.
But I have heard that the deceased communicate through songs on the radio. There are certain songs I hear all the time since Bryon died. There was even a period of time I heard Hall & Oates at least once a day and I don’t spend much time in my car. My deceased husband also seems to really like Michael Jackson, particularly “Billie Jean”, The Police- “I’ll Be Watching You”, Earth Wind and Fire; “September” (I think that is because we got engaged, married and became parents in the month of September), and Berlin’s “Take My Breathe Away” because Top Gun was his favorite movie.
I haven’t heard much in the car for the past couple of months. I just figured that Bryon was done sending those signs. He was going to find a new way to communicate with me. But the past three days have been a Bryon McKim jam session every time I have been in car. It’s nice to know that he hasn’t forgotten about me and will still try to spend time with me in the only way he can now.
- Having the courage to cut off my grief hair
I had been wanting a change for awhile. I hemmed and hawed over it for months. I liked my hair long but it was so damaged. The ends felt like straw. I also wanted something different and I have never been a blonde so I went for it. I am a new person so my outside should reflect my inside.
This was a big step for me. I have never been a risk taker but I told myself that it is just hair. It grows back. It can be changed back. But it was also hard because I was attached to that hair. I have hid behind that hair for almost two years. But I decided it was time to get rid of it and shine.
Now I just need to lose some weight and maybe get a tattoo and my physical transformation will be complete.
What are you grateful for this week?
I was supposed to go to Maine the last weekend in August but I needed to take my cat to the vet. I thought something was wrong with him. He wasn’t acting like himself and I was sure something was wrong with him. After paying my not insignificant vet bill, nothing was physically wrong him.
So now my cat is on prozac.
It’s for the best.
And I missed my trip to Maine and my 20th high school reunion. I thought about trying to swinng it but I was too tired to do 16 hours of driving in a 60 hour period
So I wound up with an unexpected free weekend. My close friend loves Sunflowers and asked if I would be up for a drive downstate to a sunflower field. I am always ready for an adventure and I love road trips so I happily agreed.
I wish I had a selfie to share but not a single one looked good. For real. My daughter wouldn’t look at the camera and I had my hair in my face.
After we looked at the flowers, we went to a farm stand. It was crowded. My friend told me that she wasn’t expected it to be crowded because she has seen too many Hallmark movies. In Hallmark movies there is a ton of space. Hallmark movies have ruined her.
Though we both agreed that that won’t stop us from watching them this Christmas.
After the farm stand, we decided to drive into New Paltz and get some ice cream. We went to Hugeunot Creamery. The ice cream was delicious and the staff was very kind and friendly. The kids had ice cream cones with sprinkles. They wound up all over the floor. Part of me felt bad but part of me figured that it’s bound to happen in an ice cream shoppe. My friend had a creamsicle float and I had an old fashioned hot fudge sundae.
On the way back, we stopped at a Samuel’s Sweet Shop in Rhinebeck which is owned by Paul Rudd and Jeffrey Morgan. The kids had lollipops (though my daughter could only handle a few licks after eating ice cream) and I had a pretzel covered in Reese’s Pieces. My friend got chocolate covered oreos.
It was a great day. I am so glad my friend asked us to spend the day with her and it was fun to discover places in New York where I had never been. I can’t wait for some Fall adventures with my friends.
Do you like to go on day trips? Where do you like to go?
Earlier this week, I had the opportunity to attend an event with NFL player and patient advocate Rolf Benirschke. This event took place at the New York State Capitol and was put on by GOBOLDLY and New York Health Works. The event was attended by a diverse group of people including legislators, legislative staff, researchers, pharmaceutical company representatives, representatives from healthcare organizations and patient advocates. I was excited to have the opportunity to attend this event. I am trying to learn as much as I can about health care and patient advocacy. I attended this event with one of my best friends, Jen. She is the New York State and Vermont Advocacy Director for the National Multiple Sclerosis Society.
The event opened up with NY Assemblywoman Crystal D. Peoples-Stokes (D-Buffalo). She talked about her experience working with hospitals in Buffalo and how they collaborate with private companies who are working bringing the latest medical technology into Buffalo Hospitals. She also shared a personal experience about a friend with lung cancer who was receiving a cutting edge therapy in New York City that was developed in Buffalo at Roswell Park Cancer Institute.
Rolf Benirschke was in his second season as a kicker for the San Diego Chargers when he was diagnosed with ulcerative colitis. In his third season, he collapsed on a cross country flight and had to have two surgeries and spent 5 weeks in the ICU. Like Bryon, he lost part of his intestine and went into septic shock and had organs shut down. He came close to dying. Rolf states that he didn’t know why his life was spared, but he was given a second chance. He got his position back with the San Diego Chargers and played for seven more seasons.
Rolf also stated that while he was in the ICU, he received 80 units of blood. This was in 1979 when blood screening wasn’t as safe as it is today. Rolf contracted Hepatitis C. Rolf was given therapies for Hepatitis C which worked. He expressed gratitude because he knew that he was lucky. He brought up how Arthur Ashe contracted HIV from a blood transfusion that he received while having heart surgery.
It was inspiring to see Rolf share his story because the only way we are going to make positive changes in our healthcare system and patient care is by education.
We are living in exciting times when it comes to medicine. My job is in oncology data and I see it. They can test some tumors for the specific markers within that tumor and a patient can get a treatment based on their specific tumor markers. I truly hope that diseases with a grim prognosis will be curable in our lifetimes.
Jen and I got a chance to speak to Rolf. We discussed barriers to patient care and we discussed part of Bryon’s story. I encourage everyone to get out there and learn about the healthcare system. You don’t need to work in healthcare to learn about it. You never know when you need to apply that information for your own care or that of a loved one.
I had an amazing opportunity this week to advocate for people living with Multiple Sclerosis. It all started a few months back when I told one of my best friends that the company I work for gives every employee five paid days to volunteer each year. (Something more companies should do.) My best friend is the Advocacy Director for the National Multiple Sclerosis Society serving New York State and Vermont. Part of her job is to give people living with MS the tools they need to be advocates. So I told my best friend that I have 5 volunteer days that my company gives me and I may as well use them and the MS Society is definitely a cause I support. My best friend invited me to join her team when they spent the day at the New York State Capitol advocating for several issues that affect MS patients.
I have several friends who live with MS as well as a few distant family members that had MS but I never realized how little I knew about the disease. Some of the things I learned included:
- The cost of medicine is astronomical and ridiculous. A medicine that has been on the market for 20 years that was $8,000 thr year when it came out now costs over $80,000 a year. So if someone needs this medicine and has a 20% coinsurance payment, they have to pay over $16,000 a year for the medicine. I don’t know how it is reasonable to expect a middle class or lower class person to be able to afford that. One of the people advocating said that they knew a middle aged person who had to move back in with their elderly parents because they couldn’t afford to live on their own and pay for their medication. I remember complaining when the copay for my albuterol inhaler went from $20 to $40 and this is a harsh reality check.
- The lack of transparency from insurance companies can make it difficult for MS patients to be able to choose treatment. Sometimes a drug may lose its effectiveness or require some trial and error but it’s hard for a patient to make that change if they can’t get a clear answer from their insurance company as to how much the out of pocket expense is going to be.
- MS patients don’t get to choose if they receive their drugs through the mail or at a local pharmacy. Their insurance company makes that decision. Some people like to get their drugs in the mail and it works out great but for other people it doesn’t work. Sometimes the drugs are stolen and since they are expensive, the mail order pharmacy may be hesitant to resend them (it’s not Amazon.com who will usually resend an item that doesn’t show up). An MS patient usually has to jump through hoops to get the medication they need and any gap in medication coverage can cause big problems in their treatment.
I learned so much during this day. In addition to learning about MS, I learned about the process of meeting with legislators and discussing issues and seeing how change could happen. I was in awe of my best friend as she would talk to the legislators or their representatives. It was amazing to see her in action. My fun-loving friend got down to business! I was also in awe of the MS patients who bravely told their stories to help themselves and others afflicted by the disease. At first I felt a little self conscious because I was “just a volunteer” when everyone else was an employee or they were living with MS but everyone welcomed me to the team. And they answered my stupid questions too without making me feel stupid.
When Bryon was in the ICU, I had to learn very quickly how to advocate for him. It does not matter how good the hospital is, one must stay on top of what the doctors are doing and saying. I think the struggles I had are the same struggles that others have regardless of illness. One of the things that always seemed to concern me was that the different teams of doctors didn’t seem to communicate and I heard that was also the case with MS patients. MS patients have to see neurologists that specialize in MS and if they see another type of doctor, it is imperative that that doctor communicate with their neurologist because what might be a standard treatment for a healthy person may cause serious complications to a MS patient.
While a patient (or their family as was my case) should always be aware of what is going on, I know it was exhausting to have to stay on top of the doctors to make sure they had the correct up-to-date information. But I had to do it. I have a background in healthcare since my profession is in Oncology data but I can’t imagine how much harder it must be for patients and family members who do not have a background in healthcare. Bryon could not advocate for himself and my heart breaks for the patients who don’t have family members who work in healthcare and don’t understand healthcare jargon. I can’t imagine how lost they must feel.
After this experience, working to make sure patients and patients families have to tools to advocate for themselves is important to me. I don’t want anyone to feel like they were hit by a steamroller like I was. I hope I get more opportunities in the future to advocate for patients and their families and I thank my friends at the MS Society of New York for this including me.