A Chronic Voice March Link Up Party

Sheryl Chan at A Chronic Voice has been hosting the monthly Link Up Parties since 2017, that’s a lot of sharing and learning from people with chronic illnesses, please check out her website, the archives are extensive.  Each month she provides five word prompts, do all five or at least three. This month I picked three, Breathing, Smiling, and Relishing. 

This month I’m talking about what I do to survive and how looking honestly at our circumstances shapes the outcome. I’m inspired by people who have so much going on with their health/life and still smile, they want to know how others are doing, and they move forward with their life. 

Breathing

I am breathing a huge sigh of relief! We were spared the damage so many others suffered from the storm. We had a massive Winter storm, the worst in 70 years for our state and it almost brought down the power grid. Our houses are not built to withstand weather below 24 degrees for an extended period of time and certainly not for lower temperatures. It was far below freezing for over 100 hours. People’s pipes were bursting, flooding their houses and apartments. You could see water raining down from the apartment above and destroying all the furniture in the apartment below. Many people lost power in the freezing tempters and the broken pipe caused many to have to shut the water off. We had several pipes break and we did have to turn our water off for three days. It’s heartbreaking to watch people go without water and electricity but it’s more painful when you know they are elderly or chronically ill. Reality hits you hard when you hear a story about a woman who has a stoma and her water is shut off. She gets so much water per day and she has to decide between washing her dishes and flushing the toilet. Hardcore reality.

Smiling

I do believe there are studies that show smiling makes you feel better. Something about sending signals to the brain. I feel happy most of the time but I don’t catch myself smiling a lot. March is a good time to pay attention to how I feel and making sure it’s showing on my face. I have to think about my husband and those around me, if I’m never smiling how will they know how happy I am. I’ve received some devastating health news this month, post about it to come. I have to remember that my health does not drive my happiness, I’m in charge of that. I can choose to be happy in spite of the circumstances.

Relishing

I received devastating news this month about my Immune Deficiency Disorder, Hypogammaglobulinemia. My immune system is in such bad shape that I need Plasma Infusion Therapy. There are a couple of issues right up front, one I feel pretty good, noting like my lab work suggests and I don’t like being dependant on others to give blood for me to get Plasma. To put my illness at the basic level it’s like there are so many players required on the field to win a game but I have a fraction of the players. I can catch almost anything I’m exposed to. That’s a hell of a position to be in. I’m relishing the time I have before my treatments began. I don’t have the complete treatment plan yet so I don’t know if I’ll be having monthly Infusion treatments or what the schedule is. It’s similar to the Antibiotic Infusion Treatments I received for Lyme Disease. Similar in that you sit in a reclining chair with an IV hooked up to your arm for several hours while the Infusion takes place. 

Melinda 

6 comments

  1. HI, Melinda! I love your images! I have CVID( common variable immunodeficiency) and give myself immunoglobulin infusions under the skin every 10 days. Gentle hugs for your new diagnosis.

    Liked by 1 person

    1. WOW!!!!! Thanks for replying. I’ve been in a bit of denial so haven’t done any research on all the types of treatments. I love hearing you give your own shots, that sure beats going to an infusion center. My doctor has had surgery so my plan meeting has been delayed. I’m setting in this twilight zone of knowing what’s wrong but not what I’m going to have to do to stay healthy. Have a great day. 🙂

      Like

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