Tag Archives: hope

FOR LYNDA

Some of us are lucky enough to have an amazing Mom. A funny, well adjusted, sarcastic, intelligent, beautiful, wise, caring Mom. And some of us are lucky enough to have two.

When I was in 7th grade I met Wendy. We became very close friends and remained that way through High School- even cheering together for several years. Looking back now Im not quite sure why the heck she was friends with me. Wendy is a doctor now. And she married a guy thats some sort of fancy research neuro doctor guy. Wendy studied a lot. And made good grades. And good decisions. See- not sure why she hung with me…although I can be fun 🙂

One of the benefits of being Wendy’s friend is you also get Wendy’s Mom, Lynda. When I would spend the night at Wendy’s house (which was quite often) Lynda would make us fresh baked cookies and bring them to us in Wendy’s room with milk. WITH MILK! Now- I know some of you know my mom, Karen Ellis. Witty, funny, sarcastic, smart, a little type A…but COOKIES AND MILK? Not that kind of Mom. Love you Karen but your strengths lay elsewhere- as do mine. My kids know Im not a cookies and milk kind of Mom. And thats ok. My very matter of fact Mom explained the birds and the bees on my chalkboard with drawings of a uterus and “man parts” and the very scientific terms that accompanied them when I was 11 or 12. Im still scarred to this day. Yes these are the same parents who blared Led Zeppelin all through the house in my childhood. What can I say. Practically liberal they were! Love them for all of that.

But I’d never been around a Mom like Lynda. Cookies and milk and ALWAYS ALWAYS ALWAYS smiling. Always sweet and happy and in a good mood. She made the perfect Elementary School teacher. God Love her. I could tell my Mom anything. No matter what problem I had- and she’d immediately draft a solution on an excel spreadsheet and help implement said plan without a hitch…..Lynda- she’d hug you tight and tell you its all going to be ok. Lucky me to have two Moms in my life. My Mom and Lynda are very VERY close friends. Best friends now. Have been for years. Yin and Yang.

I got to be there the day Lynda married Glen. I was 16. I remember thinking how lucky they each were to have found each other. Glen is so super cool! I am so blessed and privileged to have been there for that. Sometimes fate gets it right with two people.

When I was 18 my senior year of high school I was trying to decide between going to the local university just 30 minutes from my house or the college 3 hours from home. I was scared of leaving home and really debated on what to do. And there was a boy. He was staying local. So there was that. Lynda was over at our house and we went outside (just the two of us) and sat on my front steps on Addington Drive and talked. Well- she talked, I listened (thank God). She talked about the importance of leaving home and spreading your wings and getting away from your parents and NEVER doing anything because of a boy. And she helped make a decision for me- to leave home- to go away to college. I will never be able to repay her for helping me to make that decision. She was RIGHT!

When I was 33 I got a call from my Mom that my Dad had been in a horrible accident in Colorado on his motorcycle. She immediately got on a plane and headed for Denver to be with him. I began frantically running around my house, making calls, trying to stay updated on his condition. There were so, so many people in my house that day that I can barely remember it all. I really do not remember who all was there. It felt so strange to not have my Mom or sister or brother with me. When the call came. I was laying in my bedroom floor curled into a fetal position screaming and crying and SHE was there. Holding me. And just hugging and rocking me. Like a Mom does for her child. In my Mom’s absence, in the moment I found out my Dad had passed…she was there. Thank you Lynda.

Every year since my Dad died Lynda (and my Mom’s other dear friend, Shirley) have spent my Mom and Dad’s anniversary weekend with my Mom. They go camping with her or out to dinner or to a hotel or wherever. So sweet of them to spend what would be an otherwise sad day making my Mom laugh and fall off of horses (inside joke) and surely getting her drunk on wine. The GREATEST thing I learned from Karen was to make incredible friends and CHERISH them. I don’t know what I’d do without my friends.

And now Lynda has cancer. And I told Wendy I’d keep this blog “clean”. And Im not sure how to do that. Because Im mad. Im pissed. Im angry. There are a lot of good people in this world. But NONE are better than Lynda. A heart of gold and the grace of an angel and the sweetest personality ever. I have no idea why crap happens to good people. I’ll never know that. I gave up trying to figure that out years ago. But Im still mad. I hate cancer. Cancer sucks. So does Brain Rot. And Hypothyroidism. And Hashimotos. And Parkinsons.

But I love life and Lynda and I want her to know publicly how amazing I think she is. What an amazing person she is. That she has been and continues to be such a positive influence on my life. I love you Lynda! Karen loves you too and I love you more for what you’ve done for my Mom. If I could I would kick cancer’s ass (sorry Wendy) all over the place. I’d annihilate it and never allow it to harm anyone again. Im praying and hoping and wishing and crossing my fingers and meditating and using all that I have in me to make that cancer go away. You are a fighter Lynda- always have been. Love you- now kick cancer’s HINEY! :)-

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SILVER LININGS, COOL DOCTORS AND HOPE

Silver Linings: A Short Brain Rot Update

The definition of a silver lining:
silver lining. Use the term silver lining when you want to emphasize the hopeful side of a situation that might seem gloomy on the surface. The common expression “every cloud has a silver lining” means that even the worst events or situations have some positive aspect.

Staying “hopeful” can be hard for people with a rare disease and no known treatment. For two and a half years my husband has been tested for every disease known to man kind. He is absolutely healthy. Perfect cholesterol, perfect blood pressure, low body fat, perfect weight, great heart, no Parkinson’s, No MS, No ALS, no cancer. He is the healthiest person on Earth who’s brain is shrinking. Very frustrating! FIVE neurologists have had his case. Some in Dallas and some in Denver. They all were old. OK not to insult but they were all over 60…older not OLD. They all wore white lab coats and had ZERO sense of humor. I was beginning to think Neurologists were born without personalities. Not ONE of them found my use of the term BRAIN ROT funny…until now.

I fired all 5 of them and got a new Neurologist recently in Denver. She is 40 years old. And cute. And wears cute clothes- no lab coat. And cusses. And laughs at my jokes and stole my term for Spinocerebellar Ataxia and now says “brain rot” to us. She ROCKS! She runs the Ataxia Clinic in Denver. RUNS IT! And not ONCE in our initial 3 hour meeting did she make us feel hopeless. In fact it was the exact opposite. She is all about fixing this. She made it very clear we are going to keep looking until we find out WHY and then HOW to treat it. I like her. So when she ordered a spinal tap last month to test my husband’s spinal fluid I understood why Patrick said “no”. He’s been poked and prodded and through a bajillion tests that were QUITE painful with no results. All clear. Every test he takes reveals that he’s perfectly healthy….only he’s not. So I knew he would not be gung-ho about a SPINAL TAP! SHIT…who would?

But our new Dr. Cool Lady explained some very rare disorders than can lead to Ataxia that she has come across in her research and she had a “hunch” she wanted to follow. So I of course was all “oh ya- let’s stab a needle into your spine and suck fluid out”. FUN STUFF!

So we did it. Well….he did it. I watched. I didn’t want to watch but I sort of felt like it was the least I could do. The results were shipped off to The Mayo Clinic and we were to sit and wait. Sort of used to that by now. Patrick was not the least bit optimistic- who can blame him. I sort of was. And for a “glass is half empty” kind of gal that was surprising.

And ONE MONTH LATER…the results. For the first time in well over 2 years a test came back abnormal. Do you know how weird it is to be ELATED about an abnormal test?

So I won’t go into detail but she immediately put him on a medication that has worked for one of her previous Ataxia patients. It has only been 3 days. But I am hopeful. She talks to us as if there’s no gloom and doom. As if there’s no reason to expect Patrick doesn’t have a long future ahead of him. God damn it he’s gonna have to live with me a LOOOOONG time. Poor guy. At least we think so. Who really knows how long they have. Life is short and making the most of everyday is a MUST!!

I want to thank Dr. Cool Lady for being the greatest doctor we could ask of. For being hopeful. For being positive. For looking in places no one else thought to. For going above and beyond. For making me smile. Oh- and Patrick too of course but we all know this is about me ;). Here’s to HOPE….

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