Pain, Awareness and Distraction!


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Hello Luvs,

Welcome to Complex Regional Pain Syndrome Awareness Month! It is November, known also as “KNOWvember” and “Nervember” by different pain support persons & groups.It’s that time of the year when chronic pain patients, Ambassadors, Delegates, pain warriors, and many people who live with this illness, try to reach out to friends, family, the rest of the pain community and the non-pain community;  to spread information and gain support of this horribly painful disease.

We post about the fire-like pain and debilitating symptoms of this nerve and neuro-autoimmune illness. I think that some of the others who are our “friends” on Social media get really tired of seeing post after post about pain, illness, and unrelenting symptoms that keep us from living life fully, as most of them get to do. We aren’t trying to take over Facebook or Instagram. We are trying to help others to understand what we are going through. Because nobody knows, unless they truly live with this tremendous amount of daily pain. We see your posts about where you are going and what you’re doing. The trips you take and the places you get to visit. We read about you in the car driving here, there and everywhere; or being at your child’s school events. We scroll down to see the many family members who never even speak to us or even know that we live in daily pain, nor do they ever ask about it or us. We notice the friends who seemed close at one time but after awhile they, too got tired of listening about our pain.

This month is for us! This is a time of teaching, preaching, tweeting and posting. Social media is a great avenue to speak about CRPS and this is a special time of year for those of us who live with this on a daily basis. We actually take this time, not to lament about being in chronic daily pain. We are not complaining or posting of our daily struggles with this “monster”.  NO…we are CELEBRATING ourselves because we can!  We are celebrating the color “ORANGE” as it is the awareness color of our illness. We will color our world orange by the end of the month and especially on November 7th, 2016; which is “Color the World Orange Day” in the USA and some places Internationally. If we are not “celebrating”, then we should be. For one reason or another we are affected by chronic pain. Nobody really knows why any of us were allowed to “get” this painful nerve disease.  It is OK to be sad about it sometimes. Take some time to be sad if you need to and then push that sadness aside and do something to help yourself and others.  Actually, helping others is a great way to feel better about things in your own life.

There are so many things that we can use as distractions from our own chronic pain on a daily basis. The more you sit and do nothing, the more you whither away into the dark abyss of pain, sadness and nothingness. The more you try, the more you do and the more you can be positive; the better life you will have.  Honestly, sometimes I admit that I overdo it and then I “pay” for it later, with much higher pain.  I’m not saying to do what I do. That’s actually going too much the other way at times and honestly, I don’t want that for anyone one either. But there’s a “happy medium” someplace in between laying on the bed and/or couch all day and going, going and doing too much until you are in tears because you’re exhausted.  This month we are a bit more “busy” chatting and posting about CRPS awareness, but then the rest of the year we should try to do some other things to help ourselves to be happier. Of course, I’m not saying STOP advocating, spreading awareness and doing events, fundraisers etc. for CRPS or any other chronic pain illness that you live with. I’m just saying that we need to have a life outside of illness, chronic pain and CRPS.

There are things that we can do to distract ourselves from the gnawing, burning, aching and throbbing of this “thing” called Chronic pain and/or CRPS.  It wants to take over our lives and it will if we allow that to happen. The worst thing that you can do for yourself,is to get in with a group of others living with chronic pain, that are negative, competing to be the sickest and who want to bring you down with them. Instead let’s bring them “UP”, cheer them and ourselves at the same time. Find something that you used to enjoy and modify it to a way that you can start doing it again. For example, I used to be an Interpreter for the Deaf at a major University hospital and several school districts. I lost that after the car accident and I went from Interpreter for the Deaf to Hearing Impaired with 2 hearing aids! I was in performance sign language groups and ASL was a huge part of my life! I thought it was over and gone. Now i make Artistic Sign Language videos on You Tube. I try to find uplifting songs with rallying lyrics and I learn the words first and then just sign the song as emotional as possible while taping it. If I choose the right song, it seems to really resonate with people. It makes them feel emotional in a good way. Sure, I have extra pain when I’m finished, but there are things that I can do to help myself.

Distractions are good if you just don’t overdo it! If you like to be artistic with painting or drawing, you can choose one of those awesome coloring books that they have now for adults too! I thought that I was unable to do that also. My hands hurt as the CRPS and the RA/OA has really gone to my hands and they hurt after just a little while of holding a pen or a pencil.  The remedy for that? Find the kind of crayons, markers or colored pencils that are very “chubby” and better for holding onto when you’re in pain. You could also get that “molding material” that is at the craft stores and put it around your favorite coloring utensils; this way making them as thick or thin as you need. There are also little rubber stoppers that you can buy at the school supplies section, to put around the markers or colored pencils.  If you like to be on the computer, but you have a hard time using your hands, try the “talk and text” option. You may even get a good laugh out of some things that pop up wrongly when you use it. You can that way fix just a few things instead of having to write everything that you wish to write. There are programs for your desktop or laptop, one in particular that I know about, called “Dragon”. It is much better at being precise and it’s not horribly expensive. If it is too much money for you, then ask for that as a gift from several people for Christmas or your Birthday present.

There are so many things that we can do to distract from the chronic nerve pain that we know is there and we feel every day. It will be there waiting for you when you are done, but for a little while it will be a bit more distant in your mind, instead of at the forefront. There are things such as:  knitting, crocheting, painting, drawing, writing, speaking, coloring, “playing” games on the computer, social media, reading and even something like photography.  You don’t have to be a professional photographer, but if you enjoy photos, like I do, there are so many free apps (pic collage, Rhonna Designs etc.) to download and “play” with your pictures. If you need relaxing, there are applications such as “Pacifica” that help you relax to different time allotments and music choices.  There are even photography apps where you get a prompt daily and you get to be creative in taking a picture and posting it to their website (500px, Little Moments). Some other things you can do might be to learn a language or at least a few new words in a language that interests you? You can do as much or as little as you are able to do and try to take a few moments each day to NOT think about your pain, illness and the next Dr. appointment coming up.

Memories Are For Keeping….


The girls having a real Scottish TEA PARTY with their friends…at our house
My darling girls in matching outfits at the Toledo Zoo
Jessica, Goofy, Momma and Amy at Disneyworld Florida
Momma and her girls…Jessy 6 and Amy 4!!
Craig and Jessica Laughing with a goat at Disney Animal Kingdom!!

Craig doing the Pumpkin Carving with the girls! An Annual affair!!
My girls and me in Indian Guides at a Campout!! (My girls are on my lap!)
Amy and momma when Amy was on Jumprope team & Momma was coach!

 Hello Luvs,

   I’ve been sitting here today reminiscing about my “mommy days”.  I know that I’m still a “mommy” and that I’ll always be a “mommy”…but there were those “good old days” when I got to put my mommy-ing skills to work 24/7 and I loved every moment of it!! I loved it from the C-section (*well, OK maybe I didn’t really enjoy the surgical parts…LOL…but the outcome, I must say was pretty awesome)!

     I did so much with my girls and for them that I cannot even remember all of it to write it down here. I just did what any Momma who always wanted to be  “Momma” would have done! I really and truly tried to “make up” for the fact that their dad was in and out of their lives (mostly ‘Out’) and that he moved 1,000 miles away and told them the day before “Fathers day” at one of Jessica’s baseball games! OH Yes…I forgot…both girls played on T-ball, and girls softball at our church and/or at the Plymouth/Canton girls Softball league for several years running or about until the 3rd grade! After that it was dance lessons again and the other things I mentioned above. They always had CCD or “Religious Education Classes” on Tuesday nights! From Kindergarten through the 8th grade they did that and at the beginning I also taught Kindergarten CCD classes.  Tuesday nights or “CCD” nights were fun because we didn’t have much money and that was the night I got them at daycare as quick as I could (but I always did that!!!) and we popped over to Wendy’s, McDonalds’s or Taco Bell!! Then I’d take them over to their Religous Ed. classes where they stayed until about 8:00 pm or so. After that, we went home and got ready for bed, watched a bit of TV in my bed together and then I’d read to them each together or separately (whatever they wished) and I sat on their toybox and sang songs to them nightly. Some of the songs that I sang were: “You are My Sunshine”, “Mockingbird”, “Daddy’s Whiskers”, Adelweiss and a few others! I loved it and lived for it actually!

     After a long day working at the University of Michigan Hospitals in Ann Arbor, MI;*(about a 35 minute drive from our apartment in Canton, MI…) I would pick them up at day care and we would then go to our apartment just across the street. I would make dinner, eat dinner, clean up from dinner and never asked them to help really. I don’t know why? I should have taught them better and showed them how to be more helpful but I wanted them to be “kids” as long as possible. To me that meant having fun and doing their homework and not cleaning and/or helping me cook etc. They have plenty of time in their life for doing domestic services and I just wanted them to be happy and have a nice time after they finally did get to come “home”! I guess now I would do it differently if I had known then, what I know now! LOL….I should’ve taught them and showed them how much I had to do and that we were a “team” and we all should pitch in and help. I wish I’d done that and for that I admit that I was wrong! But still, that doesn’t make me a “bad” mother!! I tried to be the very best mother that I could be! I had to really be a mom and dad for many of those younger years.

   It’s funny because I never liked carving a pumpkin so much. I enjoyed the experience of baking the pumpkin seeds and watching my girls have fun with it. I loved helping to draw the faces  on the pumpkins, with the girls’ faces beaming!  To me, that was the fun part of it but the total experience was a Fall tradition. I just always thought it was more of a “dad job”. My girls wouldn’t have been able to have the experience during those several years when their dad was nowhere to be found. They wouldn’t have been able to have that one Fall tradition that I just didn’t have the strength in my arms/hands to do…the one “dad thing” or single parent thing that I just could not do by myself!  Luckily, I had a good friend, Jeff at the time.  He was so kind to come over and carve a pumpkin with the girls at Halloween time! I still remember those times and I appreciated his help so much. Another thing that I had a hard time with was teaching the girls to ride their “two wheeler” bike! I would grab anyone and everyone to help me run behind them and along side of them because I was so afraid of them falling and knocking their teeth out or something! But we got through all of those times!! We even got through a couple of Christmas’s when I had hardly any money to buy them gifts and I couldn’t let them down!

    What I did those years was really use my imagination; and it paid off in the end! They say those were some of their favorite Christmas childhood memories now! One year the church and the Domestic Violence Shelter gave me quite a few toys, dolls and games to give them under the tree. I was quite appreciative and tried to “pay back” the shelter especially, when I got re-married and re-established into a more normal lifestyle to where I could give back!  Another year that I remember was when they wanted all “baby stuff” for their dolls for Christmas! How was I going to afford real baby seats, clothing and diapers etc?? They each had their favorite dolls. Jessy had “baby dear” and Amy had her “blonde baby dear” or her “Mary” doll.  Here’s what I did: We came home from daycare/work one night in November and their favorite dolls were gone but a note from SANTA CLAUS was left for them! It said that He “had taken their dolls to the North Pole to fix them all up nicely and he would bring them back on Christmas eve”! They were filled with surprise and wild-eyed childlike excitement! It was spectacular! I was so hoping that they wouldn’t be upset or afraid that Santa had come into our home when it wasn’t Christmas eve. I had left such a *magical note with kind words from St. Nick telling them exactly what he was doing and that their baby dolls would be back, better than ever! They trusted Santa, of course. I made it a good thing and so they took it as just that!

   When Christmas morning came it was the best ever! I had gone to the resale shop and gotten: bibs, bottles, baby seats (one for each) and baby diapers, blankets, booties etc.!!! They were in awe when they woke up and saw THEIR own dolls back from the North Pole from Santa’s House and workshop. Their baby dolls had new clothes and bonnets on their heads. They had their ears pierced (I had put little earrings in the dolls ears), some baby items and they were sitting in REAL baby seats!! Oh it was really special to watch their excitement. I feel excited and so happy right now just thinking about these memories! Thank you for allowing me to share them with you!