Clara's Shake Rattle & Roll Journey

Clara's Shake Rattle & Roll Journey I hope this will also encourage others who may be struggling like myself.
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Dear Family and family of friends, this page is created to share with you all my journey navigating my neurological diseases that some of you may not be aware of.

03/09/2025

March

National Sleep Awareness Week ~ March 12-18, 2023
Brain Awareness Week ~ March 9-15, 2025
National Down Syndrome Awareness Day ~ March 21, 2025
Purple Day for Epilepsy Awareness ~ March 26, 2025
World Bipolar Day ~ March 30, 2025
MS Awareness Month
Brain Injury Awareness Month
National Essential Tremor Awareness Month
Brain Tumor Awareness Month

02/21/2025

Dear family and family of friends-
I want to update you with what is going on in my life.
Things are well, but many things are changing and I am having a little difficulty coping well, but I am trying to see the sunny side as I feel everyone's support and love. I have a wonderful husband, incredible kids, my brother & sister-in-law, my parents, Brad's parents, my sister-in-law, and my nephews are here for me in every way. My beautiful groups of girlfriends are more like sisters, they call the calvary to make sure I don't feel alone and bring sunshine and laughter. Not to mention the amazing photographers who have so generously given me prints of some of the most special moments in my life. THANK YOU ALL.
However, I do feel alone (many times) and like I no longer have purpose. I know you are going to say I am wrong, but not being able to teach, dance, or do something that makes me feel productive makes me feel this way. I do want to make clear that my DBS most certainly has given me some independence back that I was losing, but unfortunately, my tremors are progressing pretty aggressively and there is not much that can be done about it.
Along with many other people in this country, the decisions made to cut budgets have affected me and some close friends. Our neurologist's research has ended and moving out of state where she can continue her research. Being that I am part of her research and not yet halfway through my programming, I will travel to continue my treatment with her, by the way, she is the only neurologist who does brain mapping in Austin. I cannot express the anxiety and fear that filled my mind and body when I was notified, but we have a plan.
I will start PT for my spine issues next week as the cortisone shots did not work and we are trying different dosages for my pain medication, so I feel hopeful.
I am still here, peeking every once in a while to see how everyone is doing. But I stay away from doing so every day because it is quite depressing to see what is happening all over the world. So I try to focus on what I can do and love my peeps.
Know that I love you all and everything will work out.

08/19/2024

Overdose Awareness Month
International Overdose Awareness Day ~ August 31, 2024

07/11/2024

Dear family and family of friends,
I want to apologize for the radio silence. I am going through a bit of depression. I can’t explain what triggered it. I guess it a combination of losing several friends recently, my daddy’s anniversary and being in constant pain. I’m working on getting past it and appreciate ALL the blessings in my life, the procedure that is changing my life. And remember what my neurologist tells during my programmings “it’s a long road, be patient. If we make adjustments too fast, you may have side effects, be patient.”
I am having a hard time with patience, I compare myself to others that have had DBS, and seem to have recovered much quicker and not complaining as much as I do. So I’ve been trying to keep quiet.
I hate seeing friends going through serious health issues, I want to be of support instead of being in need of it.
My parents have been kind enough to facilitate a trip to see them and my brother and sister in law, and I’m so excited to be spending time with them.
I will start PT for my dystonia in August, and will be working on my balance.
I will also be getting a second opinion for my collapsed thumb joint and figure out if I need revision surgery, I can’t use my left hand due to the pain. So glad my neurologist cleared me so I can proceed with surgery if needed.

But I want to let y’all know that my family and I can’t express our gratitude for your generosity, kindness and love.
Stay strong and continue to be amazing and beautiful.
Love y’all.💜

05/06/2024

I want to say thank you to Jessica Sopolis and Richard Smith for coming over today. I absolutely love the gifts, but more so your presence. To have someone who truly understands what you go through is huge. Jessica and o not only share the same neurological diseases, but also Gastro, arthritis, issues with endometriosis, vision and a many other medical issues. They have navigated the “search” to find THE doctors that were willing to do their job, listen to me, do their research, tests and so forth. The reason I say “they” is because Richard as well as Brad, has been there with Jessica throughout this journey. Supporting, advocating and loving her. We are so fortunate to have our guys, our partners in crime next to us, sometimes holding us and lifting us. My heart breaks in a million pieces thinking of those of you that are without a partner going through this, or any other struggle. But know you are not alone, NEVER! You have s, your tribe. Even if the only thing I can do at the moment is listen, hold you and cheer you along.
As they were leaving my home, we realized that not only we have so much in common medically and the same group of family of friends, but we look alike, we even have the same hazel eyes and nose! We really are Twinkies!
I love you, sis.

05/03/2024

I’m saddened and heartbroken over the loss of a beautiful friend. His smile was as big and warm as the sun, his kindness and fabulous sense of humor could open up the cloudiest day. He had that eternal childlike mischievous look.
It hits especially hard because as I am recovering and managing my neurological diseases, he had just found out of his advanced Parkinson’s disease. I feel like such a horrible friend because I wasn’t aware about his gofundme or diagnosis. I feel like I could have reached out and offered some help, guidance, resources, information…something. And I do understand he was dealing with other health issues he was dealing with. Getting Covid and pneumonia when you have Parkinson’s or even Essential Tremors or dystonia throw a big wrench. These neurological diseases complicate any illness.

The reason for me creating this page is to be of some kind of service and support to anyone that’s is going through a dark time and trying to find answers.
It’s a very helpless and scary place when you know something is wrong but you are dismissed by professionals that are supposed to listen and support you as you navigate the process of being diagnosed and find the right treatment. It’s hard even when you have the best medical care and team.
I am so proud of those of you who have reached out to and asked questions, shared what they are going through. I am so honored that you have felt comfortable and brave enough to say “I know something is not right, but this doctor says it’s nothing”…it takes courage to say it out loud. We are taught not question what medical professionals say to us, but sometimes they are wrong. We HAVE to trust and listen to our instincts. Brad has witnessed my being dismissed and ignored, so much that I almost believed it was in my head, but my inner voice is so dang loud I had, and will continue to listen to it.
We are warriors, fighting for our rights to be heard and seen. And no matter how scary the road is, we are NOT alone, we have each other and an entire tribe who loves us and shows up.
Please continue to ask questions, seek the best medical team for your care and face it with a smile on your face, knowing that you are inspiring others to advocate for themselves, and you have the love and support of your loved ones…like I have Y’ALL.
Reach out to or someone you trust, I am not a doctor, I will not diagnose you nor set up a treatment plan, but I will encourage you, support and love you, I will share any information and resources that may be helpful to your situation. That’s what what I can offer.
And know how important you are in my journey, that the love I have for each of you is everlasting.
Thank you for listening/reading this. 💜

04/28/2024

Hey there,
So after the post I made yesterday, and deleted soon afterwards (because of a photo I didn’t notice, where I shared more than I wanted, lol) I want to update y’all.
I had been dealing with nausea for a few days, so I wasn’t taking my pain meds, really bad idea, unfortunately the prescription I was given for nausea caused MORE nausea. I forgot I don’t do well with the kind that dissolve in your tongue. So I called my doctor and have been waiting for a new prescription, meanwhile I went to get my allergy shots. Everything seemed well, until I had trouble calling an Uber to get home, Brad and Bella were also having issues with phone service, unknown to me. Thank goodness Bella had been checking on me, so she came to pick me up. On our way home I started to feel itchy and hot on one of the injection sites. When we got home I was itching everywhere from my waist up. I decided to take a bath to soothe the hives, at this point I’m covered head to toes with bright red, hot hives and running 100.5 fever. I called my ENT and they said to take Benadryl, but if it wasn’t better within an hour they said to come back so Dr. Eskew could evaluate the situation. Thank goodness it did get better, the fever finally broke at midnight. Brad had reminded me I had some leftover nausea meds, and they helped, so I was able to take pain meds, and that was amazing relief.
I’ve spent all day sleeping on and off, pain is managed and so is the nausea. My left arm is still a bit itchy but hives are gone.
I made the post while I was still a mess and didn’t realize I had share a little too much in one of the photos, so I deleted the entire post.
But what I really wanted to express was that I was in no shape to go or do anything. I had plans to get out of the house and see good friends to celebrate Monte’s birthday and didn’t want to seem like I ditched my friends.
I know, I wasn’t being logical, but when you are out of it and have been isolated for so long you act and think crazy. I understand there’s no need to apologize but that’s how I was feeling.
Now that I’m feeling better and have a tiny bit more sense than yesterday I find all of this pretty hilarious.
Don’t worry! I am being cared for and I am communicating with my doctors about all this.
And I promise I will take care and not push it. It was scary while I was in the middle of it.
The hives were so bad it reminded me of when I was little and would have reactions to penicillin AND of a time I got so incredibly sunburned that Lex Rhea, Leah Harrison and Tigerlilly Shelton just exclaimed “WHOA!!!” when they saw me in our room coming back from the beach…. I’ll never forget their faces.
😂🤣😅🥵
I want to take this opportunity to thank y’all for the yummy food, sweet and thoughtful gifts, the messages, your generosity, and your love.
Life is a gift, so let’s enjoy it, and face difficult times using the love and support from our family and friends as a shield. If you get knocked down accept or ask for help, it’s not as hard as you think.

04/27/2024

So sorry,everyone! Great reminder to check photos before posting, lol. 😂🥺

The smile says it all... 7 hours of surgery and nearly 2 weeks of recovery, and Clara is much, much better. They don't...
04/22/2024

The smile says it all... 7 hours of surgery and nearly 2 weeks of recovery, and Clara is much, much better. They don't even have the leads programmed yet, but the tremors are nearly gone, her voice is clearer, and her walking is much stronger. It's going to work! She can't wait to tell all of you about when she's feeling better. Huge thanks to all of you - this could not have happened without you

https://gofund.me/9362c6bd

Thank you, everyone! Your generosity, love and support have been crucial and so appreciated during this process. I’m hom...
04/18/2024

Thank you, everyone!
Your generosity, love and support have been crucial and so appreciated during this process.
I’m home, resting and enjoying the delicious meals, self care gifts and messages/cards you have so kindly have dropped off. I am sorry I haven’t to be available to meet with you, but I’ve been sleeping a lot, thanks to my new pillow, and managing pain and honestly not the best company yet.
I can’t express my love and gratitude. I have the BEST family/tribe in the world…literally the WORLD.

04/11/2024

Clara's home and recuperating from surgery #1! She's doing great, but it was no joke. Several folks asked about a meal train - if you want to send Favor gift cards (they seem cover more than most of those delivery apps) and you don't have her email, DM on this page and one of us will answer. Sally

No words needed here! Surgery went well apparently😂 Seriously, all your love and support gave her the strength to get th...
04/10/2024

No words needed here! Surgery went well apparently😂 Seriously, all your love and support gave her the strength to get through this Clara Reed The Continental Club

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