2.9.19
There's been a lot of rain in our area... for our area. But as I write, I look out my window and see clean blue sky, with bright white puffy clouds. The air is cool. Cold to all of us who aren't used to "real cold". The rain has washed the earth. The trees are green and clean. The tangerines, shine bright orange. The lemons, bright yellow. There's a soft breeze in the old oaks, and the critters are warming in the sun. The usually dry creek bed behind us, is flowing now. I can hear that soothing sound of water trickling, pebbles clicking, as it flows forward, down the creek. I remind myself of all the things I am so lucky to be surrounded by, of the good fortune I have, from our hard work. I can buy hay for the horses, food for all the other critters. Insurance for us, and all the household and life necessities for us.
But I'm overwhelmed with sadness, disappointments, frustrations, from too many needs on me. I am overwhelmed by what illness has done to me and my husband. I am overwhelmed with all that I am "obliged" to do, the physical care, for so many lives. I am sad for the continual realization of all the things I will "never" be able to do now, or places I will "never" be able to go. We are very homebound with all our medical challenges... it wasn't supposed to be like this I tell myself. We worked hard, we planned, we assumed. I feel cheated, betrayed, my life stolen from me. I have angry moments. I was never an angry person. I cry, and I rarely used to cry. I work hard to "control" and diffuse my emotions. This counselor "self counsels" all the time now. Optimism is now pragmatism. There are good times, good moments, so much good, but I "know" mostly "bad" is coming our way. It comes in small doses everyday now. It's just the nature of our illnesses. I am not negative, I am realistic, and I'm so disappointed, sad, frustrated, and overwhelmed. I never expected to be, as I am now...
Life is an evolution, a continual learning curve. Whether we live life on a deeper psychological, introspective level, or we just let life happen to us, our daily experiences shape who we are, and how we move forward. No matter our life circumstances, we all have challenges, goals, expectations. But illness complicates everything. Physical disabilities complicate everything on every level. All this steals life, from once healthy, active, happy people.
My focus in life has always been my family, career, animals. All the other things were frosting and sprinkles on our cupcakes. My career was stolen by Myeloma, so that's gone. The animals are getting older, and having health challenges themselves. Sadly, so sadly, their care has become a chore for me, rather than fun, rewarding and inspiring, as it used to be. At one point in my life, I considered a career in Veterinary medicine. But after a while, I knew my calling was "helping others" on a broader, psychological level. So I turned my love for helping animals into a hobby, a very small scale personal rescuing mission. At one time, we had a mini zoo here with more species than I can recall... well maybe I should write them all out... horses, ponies, dogs, cats, turtles, snakes, tortoise, iguanas, chickens, ducks, geese, peacock, goats, sheep, birds, fish. Some critters were because my kids "begged" for them as birthday gifts. Some were given to us when someone no longer wanted them. Some adopted us. Most we adopted, rescued. All were loved, and we committed to their care for the entirety of their lives.
But now, with the minimal menagerie we have left... 4 horses, 1 pony, 1 big dog, 3 littles, 1 tortoise, 1 turtle, 1 cat, 3 birds, 6 chickens, I am often overwhelmed with their care, especially when it's muddy and rainy, cold, or on my medication crash days, when I don't feel well. Yes, I do have help, wonderful help, but as we know, the challenges and emergencies happen when the "help" is gone, or unavailable. Here's what's going on now that is just wearing me down, dragging me down, causing me to question everything I am, and will be, knowing what's coming down the road medically for us.
See, for most all of our lives, Jim did so much while I was at work, and the kids at school. As a couple, we had a wonderful "division of labor" with the household, ranch chores, animal chores, etc. He was our Mr Mom, Mechanic, Ranch Manager, Master Pooper Scooper, Super Shopper, Cleaner, Organizer, Hoser, Blower, Raker, Green Thumb Landscaper, etc. Jim loved hard work. He always wanted to be a Farmer or a Rancher, and got to do all this here, on a very small scale, after his retirement from the car business. But Alzheimers has stolen all of this from him. Literally all of it. He has moments of recognition of who he used to be, and if I'm gone for blood tests, or short errands, there have been times, I've found him outside, trying to do chores. You may be thinking, good for him! He should try to do, and be who he used to be. But it's more complicated than that. He has mobility issues from various injuries, and an injury to his leg from a blood clot, etc. We worry that if he tripped and fell... well... that could be disastrous outside. Or imagine him falling in the horse arena, trying to scoop poop. This image can be comical, as picture the horses gathered around him, wondering what the heck he's doing on the ground. But it could also be a serious crisis...
Julie, thank you for sharing so openly. I honestly don't know how you handle all those responsibilities. The toll both mentally and physically. Prayers for help and and wisdom. I have always hoped you would do CAR-T, but I imagine the thought of adding that to your plate is too overwhelming. MM is so cruel, treatments often even crueler. So indescribably sad to watch the man you love leave you mentally and physically, especially when this is a time you need him most. Hugs. JC
ReplyDeleteHi Jan, yes you summarized my life and thoughts so well! I can't believe my situation. I can't believe Jim's situation. I can't believe our combined situation! And yes, I am overwhelmed and beat up, but find joy and joys daily, and as you know, always trying to find the humor in the "poop" :)) As for Car T... trials scare me, as I don't want to be the one they give a giant dose to... remind me to tell you about my neighbor and his Car T trial stories of others! Thank you for being such a loyal blog reader, my wonderful cowgirl myeloma warrior! And you are the amazing one, with everything on your plate too! Love u xoxo
Delete