Rare Disease Day

Today was Rare Disease Day. Rather than write a new post I decided to repost this one from last year. Please read on if you would like to know more about this day created to raise awareness about rare diseases and what it is like to live with them.

2/28/16: I woke up with notes in my email box reminding me that this was the big day. Oh, yeah. I guess I should say something about it on the blog, but what? I mean, I do have a…

Source: Rare Disease Day

Author: Midnight Knitter

I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled kittens. In 2014 I was diagnosed with a serious rare autoimmune disease called systemic sclerosis along with Sjogren's Disease and fibromyalgia.

3 thoughts on “Rare Disease Day”

  1. As a nurse, I felt I was doing something to help people. In the medical world, it is easy to look at someone, and ask questions. In the real world, that is not easy to do.
    I am now retired, and really wanted to put all of my nursing skills behind me. Then I met you, and I really liked your personality. I will admit, that I did a lot of thinking before I pursued a friendship. But I really liked your personality, sense of humor, positivity. (And of course, your knitting knowledge did not hurt, either).

    So here we are. I am not a nurse taking care of you in a bed. I am now a real person. I don’t know what to say most of the time, but I do know that a listening ear is just as important. I want to do something to help, but as most ‘real’ people, I am at a loss.

    I look for you to tell me what I can do for you. It does not have to be anything big, just something small. I will gladly keep you company. You do not need to vacuum up the cat hair for me. I am not there to judge your housekeeping, but just to be a presence. In fact, I will gladly vacuum for you, I know that is a very strenuous activity, you just need to ask. I will shop for groceries for you. I will drive you to appointments. And I need your suggestions on what would be a help for you. But please do not be ashamed or embarrassed to ask.

    There,… I said it. It is much easy to say what you are feeling in print. The down side to that is it is permanent. I hope I said the right words.

    KBF (Knitting Buddies Forever)

    1. OK, you just made me cry. Thank you for your friendship and help. I know that getting involved with someone who has a potentially fatal condition is risky, and I am grateful that you are willing to be my friend. In case anyone else is reading this, let me give you a clue what being my friend can be like: while driving me to a yarn store in the north end of the state Greyt Knitter casually asked if I would want to be resuscitated if I stopped breathing… Best friend ever!!) I realized when I met you that you knew what may be in store for me down the road because you had met people with my diagnosis in your ICU. Most people just assume that I will get better or that my condition isn’t all that serious because I “look good”. Very few people are able to acknowledge what is happening to me, and you are always there for me as new complications arise. You know, as do I, that all lives end in death; it is the journey that is important. Thank you. You help me more than you will ever know.

      Part of being ill with something that may downward spiral is wanting to not exhaust my support system too early. Don’t fear, I will be screaming for help if I need it down the road. Thank you for all the caring concern and messages offering help. I know that you will help me, that you aren’t afraid to help me explore my options, and that you will be able to offer common sense practical solutions to many of the obstacles that will appear on my journey.

      OMG! You should see the new yarn that I bought! I’m going to make another Fade shawl in the happiest colors ever. Be prepared for some serious yarn envy!


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