Share Your Challenges – Living with Reynaud’s Syndrome

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Glove with special fingers to use your touch screen while you wear them.

Often when people are faced with challenges they tend to keep them to themselves. Do you see yourself in one of these phrases? “I don’t want to burden others with my problems.”  “I don’t want others to think of me differently.” “I  don’t want sympathy or extra consideration.”  All of these are genuine and real reasons to not tell people about what is going on with your life. “I don’t want to be a complainer or always making excuses.” I’ve had these thoughts and I know each one of you has thought this at one time or another.

I challenge you to think of ways that you can share your challenges with others that is not complaining, that doesn’t bring others down, and might in fact bring benefit to both of you. 

In December, members of my moms’ group were discussing how hard it is to come up with new meals all the time and cook healthy food constantly.  It feels sometimes like all you do is cook and clean and wouldn’t some variety be nice. Out of that was born our soup exchange. Some simple googling showed us that it wasn’t a new idea and gave us some suggestions to make it successful. Today I’ve pulled minestrone soup, made by my friend Jen, out of my freezer for lunch.

Reyanud’s Disease

tandem nursing

With medication for my Reynaud’s, I could nurse the twins until they were 11 months old

I had been experiencing Reynaud’s Disease for about 15 years before I realized that it was an actual “thing” that I had. I thought that parts of my toes would go yellow and numb simply because I wasn’t staying warm enough and that it was a natural part of being in a cold car for 15 minutes (it took that long for the heat to come on in my old station wagon) or something that just happens to everyone when you go skiing or ice skating. It wasn’t until I was in the Special Care Nursery, pumping milk for my preemie twins, that I not only found that it was an actual “thing” with treatments and solutions, but it could also manifest in your breasts!  Let’s just leave it that if you have nipples that hurt badly and turn white or blue while nursing or pumping, talk to your doctor or lactation consultant about treatment.  With the help of mild blood pressure medication I was able to relieve the situation and nurse the twins until they were 11 months old. 

Through that experience I also learned that keeping your core warm can help with your extremities. Having Reynaud’s has also taught me that casually bringing up challenges can result in shared experiences, closer relationships and new information. Over Christmas I was asked to get something from the basement freezer and I just looked at Jon and said “can you get it?”  he replied “of course” and headed for the basement. I was a little embarassed that I was getting him to run an errand I’d been asked to do, so I said to my brother’s mother-in-law “I have Reyanud’s, so he generally does anything that involves freezers and frozen things.” It turns out, she has it too!  She told me that she has a pair of gloves with a warming element and a battery that she uses for walking the dog. I didn’t even know such a thing existed.  Apparently they make them for bikers, but they are popular with people with Reynaud’s.  

Pile of unpaired gloves

Unpaired gloves can be kept near the freezer for doing a deep dive!

Recently an old friend and I were chatting at a party. I’m not sure how it came up, but it turns out he also has Reynaud’s. He had a great green tip! Whenever he loses a glove, he keeps the other one by the freezer to use when he needs to dig around in there. What a brilliant use of single gloves, you don’t need to have Reynaud’s to take advantage of that one!

There’s a difference between complaining, making excuses and sharing challenges and solutions. Your challenge might be a child with a learning disability or you might have an extremely limited income compared to your friends or perhaps you have a medical condition that is not immediately obvious. Most people have lots of challenges. When you keep them to yourself it weighs you down, causes stress and sometimes prevents you from learning about solutions or opportunities that would otherwise be readily available to you. 

In preparation for writing this post I decided to look up a few things, such as whether it was a “syndrome” a “disease” or a “condition”.  The term “phenomena” is also used to describe it, particularly when it is caused by an underlying condition. According to the Mayo Clinic Reyanud’s is a restriction of the blood vessels caused by cold or stress that causes extremities and parts of extremities to turn white or blue and become numb.  When the blood returns they frequently turn red and have prickly or stinging pain. I didn’t know that stress can cause or exacerbate the problem.  I suspect that would be why last week on the way to a conference where I was speaking, I felt like I was getting frostbite!  My toes were so numb and painful  I thought I was going to have to find some place to warm them up before I could go into the conference. I noticed that on the way home from the conference I did not feel the cold as much as on the way there and I was surprised to discover it was just as cold out. 

Raynauds in Big Toe

Rayanud’s in my Big Toe

While I don’t go around telling everyone about my problems, sometimes taking an opportunity to share challenges and difficulties can be a useful and rewarding experience. If just one person realizes that the trouble with their fingers or toes is Reynaud’s because of this post, or if someone with Reynaud’s has learned new tips for managing their situation, then this post was worth the time to write.

Do you have a challenge that you can share in a positive and constructive manner? What happened when you shared it?

Happy Greening,

Alicia

 

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