Health update

I haven't decided if I should even update status on my health ever. There isn't much to report. Still down. Still trying to find answers.

 I can report that since I went to the cardiac electro-physiologist, hematologist and endocrinologist that I do have a few more answers and at least a few more coping strategies. The disabled placard helps. I can get closer to where I need to be without dying by the time I hit the door. Lasers, that Dr. Shiflet so generously gave me are helping tremendously to pull me out of events, and they are always with me in my purse. Always! I don't know what I would do without cold laser therapy during these seizure and passing out events.

 I am trying to sort through with different doctors on what to do for the newly diagnosed immune deficiencies(autoimmune disorder), Dysautanomia, blood clotting disorders, endocrine issues, cardiac problems and how that is effecting or causing the neurological issues. The cardiac electo-physiologist decided to hold off on the pacemaker for the time being. He didn't feel it was going to give me much help since my heart rate is jumping from the 30's to 180's during the day and when laying flat, down into the teens. However, any meds they put me on seem to make other issues worse. So, we are trying more of an all natural approach while sorting through all the issues. I am hoping that my July appointment with the Mayo clinic will help bring results. I see a specialized autonomic disorder neurological specialist and hopefully I will be referred to their team of doctors (12) that deal with the immune and blood issues. Yes, by August, I am anticipating having a team of 17 doctors that I will have to deal with. I am in unbelief that my count of doctors will be that high. And, each of them think I need to be in to see them every 6 weeks. Crazy. My life is being spent at doctors.

 The sun is NOT my friend. Although I enjoy the warmth from it, I love the feel of it warming my skin, the bright rays that create hope and joy and the brightness it gives for hope, I have learned that I cannot be directly in it. Direct exposure to the sun causes me to pass out quicker than almost anything else. Living in the Valley of the Sun in sunny old Phoenix... this is causing more than just a few issues. But, I am learning hats, sunglasses, fans, spray bottles and bottled water help. Thankfully, my sister and Suzi both installed umbrellas in their pools so that I can sit in the water, completely shaded and still enjoy some of the fun family events of the summer.

 I am trying to work. I say try. I go in when I am not at doctors appointments. Most days,I am able to endure work... days like Friday, after 40 minutes and passing out, I called Jodi to come get me. It scared my dad enough that he didn't want to wait for Jodi to get me and had Krystal take me to Jodi's house. It was nice to spend the day with Hayden on his first official day of summer vacation.

 With me still not being able to drive, life is crazy. I cannot believe it has been almost a year of everyone putting their lives on hold to help me. Thomas adjusted his work schedule to be able to take me to work and Hayden to school. We have a daily schedule of drivers for the afternoon. Monday-Joyce Tuesday-Suzi Wednesday-Julie Thursday-Jodi and Friday-Julie (or each of them takes a turn). The ward has started bringing in meals a couple of times a week again, as I cannot stand in the kitchen cooking without passing out. And, passing out while a stove being on has caused problems. Thank heavens for the Lord intervening and sending someone over to check on me or we could have had a fire. I am keenly aware of His many, many tender mercies in my life. I am eternally grateful for each of these great women and their amazing sacrifices for me. My Dad has been great about work, too. I cannot imagine my life without so many willing to give, sacrifice, give more, sacrifice so much and give so lovingly and selflessly. I cannot even discuss this without tears. There are no words for the gratitude I feel.

 Hayden has been a champ. Boy, has that boy grown up this past year. He was babied before this... my only one. Now, he does laundry, dishes, can microwave lunches and snacks, he knows how to use the lasers, what to do if I have a seizure and what to do if I pass out. He always knows who is "on call" in the afternoons so that if there is a problem he can call someone for help. He gets me blankets, drinks, snacks, medicine, the remote, the door, clumsy (my cane) and anything else I could possibly need. He is so gentle with me. He is constantly asking if there is anything I need, he looks for ways to serve me and help out. I asked him if he ever gets scared and my sweet boy replied, "Mom, I am never alone. You know, I always have the companionship of the Holy Ghost with me." He does.

 Then, there is Thomas. I have always loved him. Our love is different now. Better. No words can express the love and gratitude I have for my husband. He is my protector, my provider, my strength, my shoulder to cry on, my biggest fan, greatest encourager and so lovingly serves me every single day. Each day he looks for ways to make my life better. He works, does all errands, does anything that requires driving, anything that requires bending, the laundry, housework, dogs, dinner, breakfast, etc. etc. And, with all of that, he always finds a nice way to do something special for me. He will pick up a treat, bring home a diet coke, pick me a flower, write me a note, rub my feet, make sure that I have all my meds, remembers prayers, and always cherishes me and tells me how lucky he is to have me.

 This has been a struggle. A very hard road to walk. Yet, not one of these people make me feel like a burden or a problem. They each give and give and give and give and they thank me for letting them help me. I cannot express my gratitude.

My Father in Heaven knew the road I would have to walk. He knew the trials I would face. No, He did not lift them from me. What He did do, was make sure that I was surrounded with some of the most amazing and Christlike people to surround me, lift me up, comfort me, support me, love me, cherish me and help me. What a tender mercy. What love from my Savior. Each time I am showered with an act of kindness, I realize that the Lord put these amazing people in my life long ago... He knew how much I would need each of them. I am so very grateful! So, I am okay because of the amazing support system I have. My amazing family. My knowledge of the Plan of Salvation. My knowledge that I do not walk this alone. My Savior is standing next to me. I have felt Him carry me when I no longer had the strength to keep going myself. He has held me up, comforted me and brought me more blessings than I could even express. He is so kind. So merciful. So full of love. I am truly thankful that although I have to walk this road, I have been blessed with the best traveling mates. That has made all the difference.