The SERF Strap - Imagine Me with Two of Them!
Well, my physical therapist is trying to get my velcro braces to me tomorrow – just in time for Christmas. We have decided to continue practicing with the braces until I get evaluated by the orthopedic specialist next year. I have to wait until March to see him. {Sigh} Then, the he can let me know if I am going to need to use a wheelchair in the near future, and hopefully give me a better picture about whether hip surgery is an option to help offset any future problems.
In reality, the leg braces help me walk a little better – less like the Hunchback of Notre Dame! And, my hip and butt pain is lessened when I am wearing the velcro braces too. They have never used these braces to improve a person’s gait due to cerebral palsy, so I am going to be their case study. I will have to get used to wearing the two braces every day; and probably buy some new jeans so I can still fit into them comfortably. But I can’t wait to have them at home to practice with. I am still far from normal, but at least it is an improvement. So, Santa, all I want for Christmas are … leg braces!?!
Summer Garden Cane
I can’t believe I am really saying that! Really! The 10-year-old me would never ask Santa for leg braces. And, now, I will also have to walk with a cane. It is the only way I have the balance and support I need when I am walking with the braces. I refuse to have an old lady cane. I am going to get a decorated one and/or decorate one myself. I found some very nicely decorated canes on the internet, and I have selected one with a summer garden pattern on it.
Pearlized Pink Cane with Sparkle
On my next wish list for Santa though, I would love to have this pearlized pink cane with sparkling crystals on it. It is too expensive for me right now, but maybe next year I can splurge.
So, Santa, all I want for Christmas are leg braces and a cane ???? Life has definitely changed.
Merry Christmas and Happy Holidays to you and your families. Hoping for some pain-free good days to celebrate in the New Year. I hope each of you find peace, courage and strength to face whatever challenges that may come before you. May you receive the gift to accept each change with laughter after the tears, and the creative inspiration to live one stitch at a time.
© https://kkhymn.wordpress.com
I think I have had quite a long time to adjust to the reality of my health conditions – practically all my life. But, each time something changes, it still takes time to adjust and accept.
I was born with cerebral palsy that caused me to walk with a limp, so I have always had to deal with the reality of medical care in my life and the “stigma” of being disabled. My cerebral palsy didn’t stop me from living life or trying to do things, but it did prevent me from doing certain activities on the playground that required balance, play certain sports, and that sort of thing. Each time I realized this, it was a reality check. Every time my leg hurt growing up and I was crawling on the floor in pain, it was a reality check.
Then, 10 years ago, when I was diagnosed with lupus and the trail of autoimmune and other health conditions began, it did not hit me right away about what all this meant. I just kept living my life and just adding more medications to my “to do” list, and more specialists to my “to see” list. Like many people with autoimmune conditions, every year it has been just dealing with one health challenge after another.
But, this past year or so, when my hip, butt and back problems hit with the official diagnosis of fibromyalgia, well, that was one of the biggest reality checks I have had in my life. It really has been the first time I have felt truly disabled and out of control of my body and its reactions. My physical therapy team is helping but they honestly told me that my body has given up on me after 40 years of doing well with my cerebral palsy and can’t hold me up like it used to and without pain.
So, every time I have had a bad day where I can’t get out of bed because the pain has taken over, or every time I get so tired after doing one normal activity and have to recover for days on end … well, it is another reality check. Things have changed.
And now, today I was told that if I am unable to walk with the velcro braces that I have been testing out at my physical therapy sessions, a wheelchair or scooter could be very much in my near future. We are trying to figure out if my hip joint is stable enough for me to continue with the training or if it is actually making the joint damage worse. I won’t know what the next steps will be until some complete x-rays are taken.
The thought of a scooter or wheelchair terrifies me. It means my condition can not be fixed and is permanent. It means that things will never be the same. I am not ready for this yet. I don’t even have room in my apartment for a wheelchair or scooter. There is barely enough room for me, my cats and my yarn and fabric stash! I am not ready for this yet.
I was told today that my alignment issues can not be surgically fixed because of the way my body is now after walking incorrectly for 40 years. Hip replacement would only correct part of the problem, and is not an option most doctors would consider.
So, today, I have to take things one stitch at a time. And, one reality check at a time. None of our health conditions are cookie cutter or the same outcome for each person. So, in that sense, it is good. I can’t think about the the worse case scenario.
If I let myself go beyond this single minute, I would be overwhelmed with sadness and frustration. And, honestly, I don’t have any extra spoons to cry or get depressed. My energy is gone for today. All I have left today is exhaustion and pain.
I have to remind myself that being disabled or having an autoimmune condition doesn’t mean we can’t live life. We just may have to do things on a different timeline. It may take us longer to get from point A to point B.
Life is unfair. We all wish things were different. There is no reason why bad things happen to good people. But, I try not to dwell on those unanswered questions and just focus on what I can do right now to live my life, just so I can get to the next minute or hour or day.
Today, life does suck. Today, I question why I am on this earth. Today, I feel like my body is giving up on me. When I get a few extra spoons, I will scream and cry and let it all out, and make it to the next minute. So, today I have some hot chocolate and try tell my body to get some much needed rest.
And, then, I hope for a better day to enjoy and celebrate. And, my saving grace are Tony, my cats and my dear friends on Ravelry who remind me that I am not struggling alone, and my knit and sewing stitches. Living just one stitch at a time.
Please don’t be sad for me or feel sorry for my condition. If you can sit with me in this moment, then please do. If my life’s struggles are too much for you, then just learn to live life in the present moment and to appreciate what you are able to accomplish each day, however small the task. Listen and understand your body’s limits and the reality checks that life gives you. Celebrate your good days, and help others with their bad days. Know that you are not alone.
© https://kkhymn.wordpress.com
Abby Cat
Meet Abby Cat. So far, my best sewn kitty yet! I made her as a Christmas gift for my friend Becky who helps me moderate the Fiber Artists group on Ravelry. Abby cat is inspired by the Abby character on NCIS. Abby is brilliant, artistic, kind-hearted and goth cool. I just love watching her on the show.
Abby on NCIS
I am thinking of sending the actress who plays the Abby character, Pauley Perrett, a link to the photo of Abby Cat and offer to make her one if she likes. If only I knew an e-mail address to send her the note – do people still send stars fan mail? Maybe Abby cat would be on the show some day 🙂
The weather has been winter cold and the sewing and knitting keeps my mind off my ever increasing pain levels. But, it is feeling a lot more like Christmas now with the cold weather!
© https://kkhymn.wordpress.com
My First Sewn Doll
Meet Violet Rose. I finished her this morning. I really loved making her, although I am learning that sewing is as much about cutting fabric and hand stitching as using a sewing machine. I still have a lot to learn and I definitely need to practice my hand stitching. But, imperfections aside, I still love this first completed doll.
I have had three days of headaches this week, and I am exhausted. And, the weather changes from warm days to chilly nights have done a number on me with pain in my back and legs. Plus, I seem to be having a never-ending stomach ache. I wonder if my body will ever stop aching, and I will stop envying 80-year-olds for walking and moving around better than me, or when I will stop relating better to their daily woes than those of my healthy friends. If I did not have my creative crafts, I don’t know how I could survive all this craziness. And, without the love and support from Tony, and my friends on Ravelry, I would feel so alone in the world.
My Second Sewn Kitty
If you are struggling with anything in your life, I highly recommend starting a creative venture. Any hobby that will allow you to work with your hands and create something beautiful out of simple items. Jewelry making, scrap booking, photography, knitting, crocheting, sewing, writing or playing music, gardening … it is a wonderful way to help you work through your pain and bad days and can bring healing to your life without you even realizing it.
© https://kkhymn.wordpress.com
Suddenly, I feel like sewing some handmade dolls. And, I found some great patterns from some Etsy sellers that I can not wait to try! Both provided quick delivery of the PDF file patterns, and their instructions were clear and easy to understand. Their Etsy stores can be found at the links below, and I have included some photos of their patterns:
Of course, my first attempt at doll making will be the Violet, the cat, doll. Sewing is a dangerous craft. Now I have a fabric stash and a yarn stash, but not double the budget needed to go with it . 🙂 I am loving all of it though. I just wish there was a Ravelry-like sewing site so finding patterns and keeping track of projects could be easier.
© https://kkhymn.wordpress.com
Bit of Whimsy Jane Doll
Bit of Whimsy Violet the Cat Doll
Oh Sew Dollin Sarah Ann Doll
Kkhymn's Corner 