Every single time I ask him to pose for a picture, this is what I get.... Eye rolls, silly faces, he tells me I love Max instead of Mom and crazy boy. He is sheer crazy fun right now. He's a riot and more fun than I could have ever imagined. Little does he know, I secretly love it and he brings more joy to my heart than I can imagine.
Monday, July 27, 2015
Maya is so funny. She can jump and climb send walk up you sideways. Thomas calls her his little goat.
Her favorite game is getting a treat in her mouth and then prance on top of you and in your face showing she has a treat and you do not.
Sunday, July 26, 2015
I love that I follow some great inspirational people on Instagram. As I look through my feed, he quotes and images sometimes feel as if they were inspired to post for my benefit. I read them and oray to be able to grasp the concept in my heart and apply it in my daily life.
This one came as I walked in from surgery. Things needed done. I was miserable. In this simple post, I was reminded that all I have to do each day is what my Savior asks me to do. I out so many unreasonable and demanding expectations on myself and beat myself up when I can no longer do what I think I should. This was a reminder that the Savior is kind and gentle and loving. He understands bad days and heartache and illnesses and life. He also knows that Somedays just surviving is enough.
I'm grateful for all those that take the time to inspire others. Their work has influenced my life. I'm grateful for the inspired messages. They bless my life daily.
Thursday, July 23, 2015
Since returning from the beach, my life has consisted of doctors. I went in for a sleep study on Tuesday night. (Thank you Suzi for watching dogs and Hayden overnight since they wanted Thomas there and then on standby). I was hooked to a partial EEG and EKG, a throat swallow study, and testing for restless leg and to rule out sleep apnea. (No sleep apnea. Pain. Severe pain is keeping me up. No other results back yet. Waiting on swallow and night seizures etc etc). My sweet husband sat there until I was in bed. And asleep and them was back at 5am to pick me up. He came with breakfast in the cAr, my meds and a diet coke. Seriously. How did I get so lucky? I'm in awe at how well he treats me. I love him with all my heart. He is my strength.
Ok. Back to doctors. Then on Thursday, I underwent the second part of my foot repair procedure. I had cortisone shots accompanied by blocks and deadening of nerves. I go back for third treatment next month to cut/destroy remaining nerves. And although I opted to go thru with a local only and no anistesistha, I second guessed myself mid procedure. Boy howdy did that hurt. I stung like crazy and I was strapped down. It didn't last long but long enough for me.
Although two days later, I am so glad I opted for no anistesistha, man at the time was I wishing I would have. But I didn't want to have to go they the side effects of being under. It definitely makes recovery easier.
I also received new accessories from insurance. My wheelchair, which is temporarily being named "the throne" and my walker with a seat and wheels. This walker absolutely saved me after foot surgery and getting around. I know the wheelchair will get good use.
Hayden was fine with the wheelchair. But he asked, "how old am I getting that my mom needs a walker? Um wait. I am only 13. What's wrong with this picture?" He was laughing and so was I. We need to laugh at ourselves. Hayden asked if I was replacing Clumsy the Cane with this huge monstrosity. I laughed hysterically. He is a funny boy. I'm so glad we can laugh at ourselves and the funny things I am doing in my forties that I would never have imagined. We have to keep laughing. It is what it is. We just need to make the best of it.
Next week starts the fun. Annual well women's exam, mammogram, lab tests, bladder biopsies, pelvic wall biopsy, visit to a new gastrointestinal doctor, and more pulmanologist testing. It should be a crazy and eventful week. Not looking forward to it but with the new diagnosis, I am praying they can help ease and manage some of the intolerable symptoms better.
Along with this fun, I get to arrange paperwork to see a rheumatologist to diagnose and manage my autoimmune disease. And of course, I must make time to see Dr Shiflet and be adjusted and get a foot bath. I desperately need both.
My life is good but I must document the not so fun part of battling my disease. I just have to rememeber, I am not my disease. I am still Jerlyn. I am a mom, a wife, a sister, a daughter, an aunt, a friend, a Mormon, a firm believer and follower of Christ, a writer, a dreamer, a believer and a teacher and student. I am Jerlyn. I have an autoimmune disorder, I am currently in pure autonomic failure, diagnosed with small fiber neuropathy, peripheral neuropathy, an us identified autoimmune disorder, cardio-neurogenic syncope, I have multiple system atrophy, damaged mylenin sheath, strokes, seizure disorder, and the list goes on.
And the blessings FAR outweigh any heartache and challenges. I truly am blessed and I do have a wonderful life surrounded by the great ones. I'm so grateful for all I have, all I have been given and all I am. It is a crazy life but it's mine. And I pray and plead every day for another day, to stay here with those I love and cherish, and continue to walk this earth. I'm so very grateful for my life and all that it entails, even my diseases. Because it has taught me so much about living. I havee learned to live every day without regrets. And that is priceless.
This boy of mine..... Simply amazing!!!!
He is kind and good. He is helpful. He gives his all me sees a need and tries to fill it. He sacrifices. He loves The Lord with all of his heart. He is obedient. He is happy and positive and upbeat. Not only does he see the glass have full but he is so incredibly grateful for the water. He is a delight. He tries hard to serve. He has learned to clean and cook and give me my meds. He is always asking what he can do or how he can help me and others. He is so Christlike.
I feel overwhelmed with the responsibility that comes with raising him. He is so special that I often wonder who he was before he came to this life and what his role is here and in the celestial kingdom. I pray that I can do my best and give my all to teach him enough and help him obtain all,he was sent here to do.
Did someone say"TREAT?"
Sorry. With my crazy life Somedays I must document the random and crazy things that happen so when drs ask me later, I have a pint of reference.
I developed the craziest rash at the beach alrhought these pictures were after treatment and when it started to clear up.
They were round hives basically in a round circle formation but only on both elbows and both knees. It started with my right elbow burning at the beach and spread to left elbow and move to right knee and when I returned home my left knee.
Pharmacist said he had never seen anything like it being so symmetrical and only in those four spots. His guess? Allergic reaction to something? Benadryl cream and Benadryl are helping alrhought right side still is infected the knee even worse. I will be at dr on Tuesday so I will ask then. Very strange. Very strange. If doesn't clear up, pharmacist said it may be onset of rheumatoid arthritis. I'm praying it's not that.