Toast

Chronic Struggles in March

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.

Breathing

Incorporating

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

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

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.

Smiling

Stopping

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.

Relishing

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.

12 thoughts on “Chronic Struggles in March”

  1. I applaud you for trying to learn photoshop! I had that as a goal for myself last year and then had issues with my photoshop download and gave up. I hope you get to have your vaccine before the new grandbaby comes but I don’t blame your for wanting to go visit either way!

    1. I know how it feels to give up. Learning as I go has been my motto! Blogging forces us to learn so much, that I would personally never bother to learn. Sometimes I give up on something, but then get stubborn and dig back in later when I feel like I can keep banging my head against the technology wall. lol.

  2. I do hope you get to see your grandbabies soon, That will definitely be something to smile about. Sorry to hear about your health struggles but I hope you get the vaccine soon and that will put one worry behind you.

    1. Thank you. I’m ready to give lots of kisses 🙂 Hubby is getting the vaccine today, and maybe I will be getting one soon. Hope you keep safe!

  3. Hi Lisa,

    Where do I find you for book reviews aside from your site? Are you on GoodReads or on IG as a bookstagrammer? If yes, you can find me under Carrie Kellenberger. I’d love to connect and just posted my own post for International Women’s Day reading suggestions.

    Your second comment about your neck really hits home. I have AS and most of the time it feels like my head is going to fall off. The muscles in my neck and shoulders as well as my C5-C6 are compromised. I’ve often wondered if it’s EDS since my symptoms are so similar to other patients, but doctors here in Taiwan have been reluctant to follow through on my suggestion. Great write-up. I enjoyed it. Looking forward to connecting over books!

    1. I started my book blog and then signed up with lots of review hosting sites: xpresso, iReadBookTours, and others. Then, I get emails of available books to review. Now, I’ve got tons coming in every day. I just pick the ones I want to review. I’ll look you up on Goodreads!

      EDS…. it’s very hard to get a diagnosis. After one of my doctors told me I was hypermobile, I looked into it. I called a geneticist and was lucky to get in without a referral. Then, I was tested and diagnosed. The only problem is that there haven’t been any real helpful treatments or medications. Physical therapy wasn’t good for me. Every PT just pushed me too hard and made my pain worse. I wish there were better options for neck problems.

  4. I may be trying a new diet soon myself- but I do not relish it. lol

    What I noticed about smiling is that I smile a whole lot- all the time- Up Until you stick a camera in my face, then Nop. lmao Must be an introvert thing. My bf is the same way.

    1. Good luck with your diet…they’re hard to start. It’s hard to get a good smile for the camera. I usually have to to take about 10 pictures to get one with a natural smile. Maybe it’s because I’m an introvert, too 🙂

  5. Well done for keeping busy despite your challenges! Chronic conditions are exhausting to live with, and it sounds like you are trying hard to balance the need to rest with the need to be active.

    Good luck seeing your grandchildren soon. My daughters and I haven’t seen my Mum since December and probably won’t see her until April at the earliest. It’s horrible!

    1. Thank you for your encouraging words! It really is horrible to miss our loves ones, and I hope you can visit soon 🙂

  6. Hi, Lisa! I’m so excited with you about your new grandbaby. My daughter-in-law is expecting in July! I cannot wait to see her. I agree with you about smiles. My face looks very sad and tired to me as well.

    1. Congratulations! It’s the best thing to be a grandmother 🙂 I hope you can safely visit and hold that sweet baby!

Leave a Comment

Your email address will not be published. Required fields are marked *