March has arrived, and with it there have been warmer days here in the Mid-West. The sunshine is so pleasant to see when I look out my windows. I truly enjoyed the snow that we had earlier, but the negative temperatures were not fun. This bitter weather was the only time I have been cold in the last few years.
Most of the time my temperature is too warm, due to my dysautonomia. It was nice to feel cold and actually need to wear a sweater and socks inside the house. Most of the time I need to have a fan blowing.
This month, A Chronic Voice has given us five new prompt words. It’s always fun, and sometimes challenging, to put my thoughts behind one word. I’m grateful for the chance to share with our chronic illness blogging friends in this way.
My blogging life has been extremely busy after I added my third blog. This book blog is one of the most fun. I get to share books with my readers. I enjoy reading and reviewing books. It’s fairly easy because I’m a fast reader. As I try to keep up with three blogs, I also am incorporating another important project. I’m trying to learn Photoshop Elements. This has been taking me a long time, because it’s not easy for me.
As I try to incorporate this project into my busy days, I haven’t gotten as far as I wanted to. Many days pass between the times I can work on this . My goal is to be able to produce some great content that will be useful and helpful to my readers. My struggle with Anaphylaxis has been so awful lately, I’ve had a hard time even getting my basic blogging finished. And, my Photoshop goals have had to wait.
Breathing has been on my mind so much lately. Knowing that stress is a big trigger for my Mast Cell disorder, I have become more aware of my tension. I’m physically tense all the time. Having Ehlers Danlos Syndrome, I know that my muscles stay tense around my spine because they are working non-stop to try and hold my vertebrae in place. With the slightest movement, my vertebrae slip one direction or another, based on which way I move. It’s an unsettling feeling!
My neck muscles are the most tense, having to hold my head up. They are tight 24/7 and always have knots. I get tension headaches from this and my neck has developed a fat pad because of this. So…… I’m constantly telling myself to relax and breathe. As I sit and feel my self tensed, I try to practice slowing my breathing. It helps me to feel the muscles relax and reduces stress.
Smiling is another thing that I’ve thought a lot about recently. When I look in the mirror, my facial expression is so sad. I look like I’m about finished. My eyes are droopy and my mouth is down. Because I’m experiencing so much pain, nausea, and fatigue, I don’t have a regular smile on my face.
I’ve been trying to make myself smile more. I believe it’s reassuring to my family to see me smile at them. My natural tendency is to just be real and let it all hang out. But, that isn’t the “me” I want to be. I want to show that I love them and care about them and what they say to me. So, smiling is an important part of love.
I’m trying so hard to stop my cycle of horrible allergic reactions. I have taken more Benadryl in the last few months than I ever have! My Mast Cell Activation Syndrome is totally out of control. Anaphylaxis has been happening much too often. After the last three Phototherapy treatments I have had a severe reaction. The doctors have told me that a reaction to this would only be a rash or sunburn. So, I’m wondering if my very weird body could react with an allergic reaction?
We know that with Lupus, you’re not supposed to have phototherapy. With Lupus, the reaction from phototherapy would be rashes and Lupus flares. But I have Sjogren’s Syndrome! Sjogren’s is treated with the same drugs as Lupus, but it isn’t studied enough to know all the facts about how it affects our bodies.
Could I be having problems because of Sjogren’s? I don’t know. I’m very worried and have put in a call to the doctor to discuss stopping phototherapy treatments. I’m scared because I don’t feel like anyone knows the truth about what’s happening to my body. I can’t find any literature, studies, or even experiences with this problem.
I can tell you what I’m not relishing…..the anti-histamine diet. This is so restrictive! I can eat almost nothing! Of course, I don’t feel good after eating anymore, so I dread mealtimes. I am relishing something though……the idea of seeing my grandchildren. I haven’t seen my first grandchild since early November, 2020. And, my second grandchild is due next month. I’m relishing the visits that I will have.
I’m in line to get my vaccine and hope to get the Johnson and Johnson before the baby is born. But, vaccine or not, I will be going to see my new grandbaby. I’ve had it with missing them so much. I have been very good at staying home and avoiding the virus. But, grandmothers just have to see their grandbabies!!!!
Life with numerous chronic illnesses is hard and growing progressively harder. Acute illness and chronic illness are happening at the same time. There’s only so much a body can take, and often I wonder how much it will bear. Only God knows and I pray that He will bless me with more days.
@2021, copyright Lisa Ehrman
Disclaimer: I’m not a medical expert. This post contains my opinions and experiences and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.