It’s been a while since I wrote a blog for pixels2Pages.  Here’s my update on what’s been going on over the last 18 months. In December of 2017, I started having vague eye problems and dismissed it as lack of sleep.  Little by little through spring of 2018, those symptoms became worse and I saw my primary care provider.  He thought it might be a relatively uncommon disease but didn’t want to go there without further confirmation. I retired from p2P summer of 2018 in order to get some answers.  Five doctors and a year (December 2018) after symptoms were first noticed, I received a diagnosis of Myasthenia Gravis (MG).

Myasthenia Gravis is characterized by weakness and rapid fatigue of the muscles under your voluntary control. It’s caused by a breakdown in the normal communication between nerves and muscles. There’s no cure for Myasthenia Gravis “yet”, but treatment can put the disease into remission and can help relieve signs and symptoms, such as weakness of arm or leg muscles, double vision, drooping eyelids, etc…It’s nickname is the “Snowflake” disease because everyone can have varying symptoms and different levels of weakness.

This blog is not about MG. I am so blessed with this diagnosis (which by the way, as a former critical care nurse, initially scared the bejeebers out of me). This blog is about support systems.  It’s so important that no matter what challenge/adventure/journey we face, to have a strong, reliable support system in place.  It can include your faith, spouse/significant other, kids, relatives, friends, church, and your health care team.  It can also include music, crafts and other things you love to help on lonely, frustrating days. Try new things (because you’re never too old to “learn something new).” I learned how to make Crème Brulee and macarons at home! Stay involved. Laugh a lot. Focus on and help others.  Volunteer somewhere. Find things you love and do them if you are able.  I love Artisan and working in Artisan, and it was extremely difficult to “retire” from pixels2Pages.  I did find joy in working on some of my own Artisan projects (although limited at first because of vision problems).  In some of the free time I had, I also created quite a project list for my husband that I can’t do on my own. He’s still plugging away at that!

I am blessed to say my support system is phenomenal.  MG has allowed my faith to grow exponentially.  What a blessing and comfort that has been! It has also revealed the many, many friendships and relationships, that many times, I took for granted. MG has given me a great focus to re-prioritize what I do and how I live.  Not everyone gets that chance.

My husband is my rock, although we did have to have a discussion about him being my support/advocate and not my babysitter.  I had to realize he was looking out for me with his “hovering.” He is a health care professional and I think it frustrates him that he can’t fix this. He has texted many friends to have them watch over me.  We came to an agreement in which I have to promise to let him know when I need something and he won’t hover (I should say he’s come around to my way of thinking)!  My kids check in regularly. The p2P team, while living in so many faraway places has given me continued encouragement (thank you for knitting needles and yarn, a new skill I’m learning), not to mention those of you who already know what’s been happening in my life.  My Life Group has been there continuously, some even taking me to doctors’ appointments when my eyes needed dilating.  My girlfriends sat with me during a pity party but encouraged me afterwards. My church, many church friends (one sends me encouraging reading regularly), and Pastor Sam have been there with encouraging words and prayers. Friends at Mt. Pilgrim Church (Collin County Food Ministry) have truly blessed me and given me many hugs along the way. I have long distance friends who make sure I’m doing well. They call and send notes regularly. Our travel buddies and my prayer partner are checking in and encouraging us both. I was recently in Oregon, where I’ve trained many times. They hugged and loved on me and we picked right up where we left off over a year ago.  Lastly, but certainly not least, is my health care team.  Each doctor I saw up until diagnosis was kind and sent me on to someone who was more knowledgeable in whatever they suspected was the problem.  The doctor who figured it out, my neurologist at University of Texas Southwestern (UTSW), is beyond my expectations. She is knowledgeable to say the least, but also kind, understanding and patient.  My never-ending questions have always been answered and best options offered, discussed and chosen. I’ve never felt rushed and I feel like I’m the only patient being seen that day.  That doctor, friends, many prayers along with my faith have taken away the fear, allowing me to live my best life right now.  The symptoms are closer to being under control and I have been able to re-join the pixels2Pages team and spend more time with them and all of you. I am joyful!

Please know, I am NOT saying you can’t hurt, get angry, cry or have any other emotion when you’re on a difficult and challenging journey. What I am saying is to surround yourself with the people who love you, will hurt and cry with you, but lift you up and help you move on to get through one hour or one day. To get through that chemo, or surgery or difficult time with a child, co-worker, friend, job loss/change, or even face another day.

My adventure is constantly changing and probably will keep offering up new challenges and discoveries.  Some activities have been adjusted, side effects to medications allowed for (did I tell you I hate pills), and I don’t stay up until the wee hours anymore by choice.  This is an adventure.  I look forward to each day, including doctor appointments.

I am blessed for being able to be part of FOREVER and the p2P team and part of your lives again. If you get a chance or are just bored during confinement, you can go to YouTube and listen to what has, through this adventure, become my favorite song, “Different” by Micah Tyler. Help someone else, be kind, embrace change, struggle well, choose joy. In the image below you’ll see so many of the people who support me with wisdom and love. Life is good!

PS.  The cornavirus (COVID19) has changed lives in such a short span of time.  It is now, more important than ever, because most of us are home bound, to keep connected by phone, Face-time, Skype and also using many other technologies available.  Take care of yourself and look for opportunities to help others, safely.  PLEASE help our health care workers.  As the spouse of one of those health care workers and a relative/friend to many more, the best thing you can do is stay home unless necessary for work,  groceries, medication or needed medical appointments.  It’s going to take every single one of us, to do our part to help protect everyone else and stop the spread.

I’ll “see” you in April during our Virtual Birthday Bash!  Get ready, it’s going to be so much fun!

Blessings from Texas,

Mary

Below are a few links to some of my recent projects. I’ll link to my sons wedding book soon:

Salty Sisters Road Trip

Baltic Cruise

Gradventure

Mediterranean Cruise 

Page by Mary | Content used:  Canvas Cardstocks Paper Pack No 5, Artistry de Azul Kit both by DesignerDigitals; 100 Country Bundle (Alphaset) Seatrout Scraps; Digital Overlays Baby Girl – StoryBook Legacy | Font: Archer Book

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46 Responses to Blog: Choose Joy

  1. Sharon Enke says:

    Thanks for sharing your inspiring story. Glad to know you are doing well. On another note, is your Choose Joy page a blueprint? I’m working on a book for my grandson who will graduate next year, organizing it by categories. Unfortunately, I wasn’t doing scrap booking when he was young. Therefore, I am using a lot of blueprints with a lot of photo openings. Your pages looks great and displays many photos well.

    • Mary says:

      Hi Sharon, It started out as a Blueprint called ChurchofTheSavior R side. I added photo openings and adjusted a few things. Your grandson will be thrilled with the book!

  2. gemofjules says:

    I echo everyone else’s sentiments that we are SO glad you are back and your health is improving. Everything you said is not only timely but Timeless advice. I wish everyone could tap into what you’ve found and learned. How much better the world would be.
    Looking forward to being inspired both with you wisdom and your Artisan skills.
    Julie Morris

    • Mary says:

      Julie, Thank you so much for the kind words. I think maybe I should have learned some of these lessons sooner! 🙂 I’ve always been a bit stubborn (Don’t let my husband know I’m admitting this. Like he doesn’t already know)! Look forward to working with everyone again. Let me know if there’s something specific you’d like to see focused on!

  3. Shirley Shingara says:

    Thank you for sharing your experiences and your wisdom. I have “missed you” on this platform, and the beauty of your words-and honesty- are inspiring. As a nurse (in pediatrics at a children’s hospital within a larger hospital) I echo the call to stay home but also REACH OUT. We can use technology to connect.

  4. Terry Vachowski says:

    Mary I’m sorry I’m just getting to this, as I’m so behind on P2P posts. I am SO glad you are back! Thanks so much for this inspiring blog, and sharing your journey with us. Stay safe! XOXO

  5. sandi says:

    Mary, thank you for sharing your beautiful story. Thankful you have such a good support system. Your story can help all of us during this time and whenever we have trials.

  6. Thank you so much for sharing your story! It sounds like you have an amazing support system to help you. It’s also important to know that it is okay to have your pity party. No one can be strong 100 percent of the time. We are all only human and we all have highs and lows and it is our support system that gets us through those highs and lows. Can’t wait for the Birthday Bash!

  7. bjust92@gmail.com says:

    My father received the same diagnosis about four years ago. His started with a drooping left eyelid, which we initially thought indicated a stroke. When it became difficult to chew, however, his doctor sent him to a specialist who was able to identify his condition correctly. My father is 82 years old and spent his life farming and ranching in South Texas, so we were so amazed to learn one of the leading specialists in MG practiced just an hour away from his small hometown. She began treating it aggressively. She put him on some strong meds, ordered him to stop working outside in the heat (an order he ignored, which landed him in the ER when he was suddenly unable to swallow), but eventually, she was able to put his MG into remission. I am happy to report that despite some bumps in the road, he is doing well! I have not come across many who have this disease. I’m going to send my mom and dad a copy of your post. I know it will encourage them, just as it has me this morning! Thank you for your courage in writing about your struggle. It has blessed my heart and reminded me to be grateful for all we have been through, as well.

    • bjust92@gmail.com says:

      Meant to say he had a drooping right eyelid. It was on my left when I was looking at him, lol.

    • Mary says:

      Thank you for sharing your dads story. Se grateful for doctors who understand this rare disease. I haven’t had to go to ER and hopefully never will! Take care and stay safe. Hugs to your mom and dad.

      • Mary says:

        Thank you Avril. Like many others with chronic conditions we live a new normal. I AM ultra blessed to have a fabulous healthcare provider who is on the cutting edge of this disease and my PCP is happy to just go along with what she recommends. Work has been a joy to get back to and seeing everyone’s pages have been inspirational! Stay safe.

  8. Avril Lawson says:

    Wow, so sorry that you have had to go through all that, but wonderful that you have such a strong support network. Not knowing what is going on must have been the worst. It is great to see you back on board again and I wish you the very very best with your eye care. You are an inspiration and I always love your travel pages. Stay safe and keep well, Avril

  9. Kaye Rhodes says:

    Thank you for sharing your experience, Mary. I’m so glad you’re back here with us and pray that you will continue to be well.

  10. adakallen says:

    Mary, I am so sorry! I did not know what you were going through (how did I miss this?).
    I am TRULY glad to know that you are doing better!
    I am close enough that if you need anything, let me know!
    SO GOOD to see you back with p2P!
    Love,
    Ada

    • Mary says:

      Ada, Thank you so much. It’s all good. I’m doing well. Thank you for your offer. We’ll gt together for fun after this crazy virus goes away! YOU stay safe.

  11. Linda DeLaughter says:

    Dearest Mary! Your blog touched my heart and that of so many others affected by a debilitating disease. We are proud of your progress, and of course, we are selfish in knowing that we can have you back with us as a p2P Pixie — even virtually! Can’t wait to “see” you in April, albeit not in person, and looking forward to learning more new tips on our digital scrapbooking journey through lives.

    • Mary says:

      Thank you sweet Linda, I’m even more thankful I got to see you and Rawlin at Jim’s wedding. Will miss seeing everyone at the Birthday Bash but we’ll be sure and see each other again! There are so many affected by MG and I am so blessed to have this fabulous doctor taking care of me. Many don’t have that. Keep in touch. Virtual Birthday Bash is right around the corner!

  12. Julie Calhoun says:

    Thank you for sharing – that is beautiful and inspiring!

  13. Alison VanderArk says:

    It was an inspiration reading your blog. Today our church had “worship from home” and tomorrow starts the second week of “working from home”. My adult son begins 7 weeks of chemo/radiation therapy for non-invasive cancer tomorrow, so our attention is 100% on his therapy and it should be gone by summer. We are so blessed to have the support system you mentioned in your blog; it’s scattered all over the US and we thank God for them. I’m so glad you’re back and can’t wait for the Virtual Birthday Bash. Blessings to you, your family and all of the p2P community.

    • Mary says:

      Thank you Alison. Will keep all of you on my heart as you navigate this journey with your son. So glad you have that support system. Trying to figure out how to help those who don’t while we’re confined. Best wishes to you.

  14. Cindy Rold says:

    Mary, Welcome back! Thank you for sharing your journey that you continue to take. Your blog post is timely, considering how all of us are now dealing with Covid-19. Thank you for providing hope and inspiration during a difficult time for the world. I look forward to meeting you in person next year at the Birthday Bash! Cindy

    • Mary says:

      Thank you Cindy. I had no idea when I started writing this blog that we would be where we are today. Our front line workers really need our prayers and our help by all of us that can, staying home. Our doctors, nurses, lab workers, pharmacists, employees of essential businesses like drug stores, grocery stores, our truckers that are transporting goods and so many others are doing so much to help the rest of us. You stay safe with your family. We’ll meet soon.

  15. Karen Bowser says:

    Mary, I did not know that is the reason that you stopped p2P. I am sorry that you are going through this, I know it isn’t easy, but our attitude does help. Nice to have you back.

  16. faye.gadberry@yahoo.com says:

    You are an inspiration to me!

  17. Pat says:

    Thank you for sharing your story and thank you for “choosing joy”! What an inspiration you are to all of us. Hugs and welcome back!!

  18. Taylor Teresa says:

    Oh, Mary. I had no idea you were going through this and had no idea why you retired. I hope you are doing well now — it sounds like you are doing better since you are joining us again. I am so glad because I know you added a lot to the team. And we certainly love you. You have my prayers and welcome back.

    • Mary says:

      Thank you Teresa. I have the best doctor ever! I’m certainly glad to be back and seeing everyone’s pages. I’ve really missed my teammates and all of you. Take care so I can keep enjoying your layouts! 🙂

  19. JKT says:

    Thank you for sharing your journey, Mary. We never know what a person is going through. Welcome back.

  20. Donna says:

    Thanks for sharing from your heart. Stay safe, stay healthy, and keep scrappin!!
    Much love, donna

  21. Ann Marie says:

    Mary, thank you so much for sharing your journey and your story with us. You inspire artistically, spiritually and emotionally. You are blessed and a blessing to those who know and love you. Choosing joy! Sending prayers and virtual hugs your way.

  22. lvail@telus.net says:

    What a wonderful blog, Mary!
    As a person with chronic health problems I can relate fully to having a strong support team. My friends get me through the bad days and the good ones. They are so understanding of cancelled plans that drive me crazy.
    I wish you continued strength and progress. Bless your hubby and family, friends and medical team!
    Can’t wait for the Birthday bash!
    Lynn in New Westminster BC Canada

    • Mary says:

      Lynn, Thank you for sharing. A chronic condition certainly can be a challenge and we learn to LIVE with a new normal. Keep in touch and let me know how I can help you. “See” you next month at the Birthday Bash!

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