Truth as I see it

    I found this great list of Mothers day ideas and wanted to share it with you. Help the people in your life learn how to help you. This is from my friend Kim and her site is Grace is Sufficient 10 Great Mother’s Day Gifts for the Chronically Ill Woman E ach year my husband and kids ask what I would like for Mother’s Day. To be honest, they usually come up with the best gifts all on their own. Here are a few great things I’ve either received or would like. I bet you can relate! Here are 10 Great Mother’s Day Gifts for the Chronically Ill Woman A slow cooker with a few ready to go freezer meals for those day’s you’re not feeling well. Having a ready to go meal in the freezer that just needs dumped in a crock pot can truly help on those days when you’re not up to cooking. A pillow for the bathtub. Hot water therapy is recommended for a number of chronic illnesses and chronic pain conditions. Why not have a tub pillow to allow y...

I needed to read this today and it helped tremendously. Highly reccommend it. Serenity when ill and also this site rest ministries Be well!

  Lord on days like today with sharp pain in my body, I wonder where you are? Most people have one illness or injury to deal with and for me you keep allowing  more. Yesterday was a beautiful day spent with my husband and on the island. Everything seemed perfect, but by the end of the day the pain in my hip/back started. I should look at yesterday as a gift I suppose but my desire is for many more days like that - many. Help my attitude Lord change my heart. When I start to question why it gets me in trouble emotionally. My upbringing included the Catholic church which at that time, focused a lot on the sins and suffering from them. I only went to Catholic church until I was about 13 but some of those messages get ingrained in to your psyche so deep that I catch my self asking for your forgiveness Lord when I am in pain or having difficulty. The truth is I am already forgiven and the price for my sins is paid though the conversations of prayer with you are al...

I am happy to say I have started to use a cane and it has been quite useful! It helps my balance and my confidence - this is walking with out my AFO's like I like to do sometimes. This is part of the acceptance I have talked about.  I am really glad my physical therapist suggested it. I have also noticed when people see me with a cane they give me more room to walk through a crowded room, etc. I think it will let people know someone who has trouble walking is here and needs to find a chair like when we went to the movies this weekend.This is not a loss it is a gain and I am grateful to have it and have a little more freedom using it. Might sound strange to some. Never judge another until you have walked or in my case stumbled in their shoes. Lord I am so incredibly grateful for the physical therapist that you have brought in to my life here and how much knowledge she has about CMT . I love working with her she is a good listener and has deep compassion. She was the bright s...

One way to end CMT is for people that have it to refrain from having their own dna offspring. I was told in 1980 by a genetics counselor I had a 50/50 chance with each pregnancy to have a child with Charcot-Marie-Tooth. My first reaction at that young age was based on the 2 people that I knew who had it my father whose symptoms were so slight he did not know until I was diagnosed that he had it, and myself. I had corrective foot surgeries in 1977 and 1978 that changed my life - I thought forever! CMT wasn't so bad I thought and medical care just keeps getting better so I ignored the warnings including the concern for my physical ability to handle pregnancy and birth, I just did not equate the two with CMT and possible progression of my disease which did occur with each pregnancy. I rolled the dice so to speak because I wanted children so badly and it never occurred to me that if I did pass on CMT and that it could be worse or progress faster than mine had, I got lucky, 3 kids no C...

Lord thank you for your patience with me I am undeserving but grateful . My husband just bought me a brand new box of 64 Crayola Crayons and if you  know me at all you know how thrilled I am! Color, coloring, creating, wonderful. When I am need of nurturing coloring connects me to my mother who was such a good nurturer. She would sit and color with me in the hospital and at home when I was sick. A brand new box of crayons is a world of possibilities and is so much fun to open. Each crayon perfect and waiting to be used. I hope God sees me this way not perfect but willing to be used by Him. Charcot-Marie -Tooth my chronic disease is not usually the cause for my pain. Overdoing it and when I am physically tired can cause pain. I get cramps or sore muscles but overdoing it for me can be simple things like pulling weeds for 10 minutes or walking without my AFO"s for too long. The horrible, awful, burning, aching allover  (don't want to live) pain is from fibromyalgia and sin...

Not a long post but one with lots of links to other posts in case you have time to read them. It is getting to that point for me trying to figure out when to get a scooter and which one. Of course I first have to get my insurance to be on board. I want to  remain as independent for as long as possible and a scooter is what will help me achieve that. We went to the only medical supply store here and I test drove one on low power then turned it up to half power and almost took out a shelf in the store! Kind of fun! Keeping a good sense of humor is so important to this chronic illness gig. I looked online and even found a scooter that will go on the beach which excites me beyond explanation. Smaller than a coconut! Before I get a scooter we have to move somewhere that is handicap friendly. The small place we are in is not. I know you are asking why? how? well the rental market here is tough and having a dog even if he is small makes things harder. So when we were in a pinch...