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