Please Take 1 Minute


I am excited to announce that I have been nominated for the Wego health “Best in show-Blog” award category in the sixth annual Wego health awards.

Wego helped is a mission driven Company connecting healthcare with the experience, skills, and insight of patient leaders. They are the worlds largest network of patient leaders, working across virtually all health conditions and topics. Click here: to learn more about their patient leader network.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of Wego health: to empower the patient voice. The 16 award categories, the Wego health awards are the only awards across all conditions and platforms, that recognize the over 100,000 inspiring patient leaders who raise awareness, share information, and support their communities-but often without recognition.

First, I would like to say “thank you” to those who nominated me for this award. I appreciate the time, the kindness in your heart and thoughtfulness that it took to nominate me & this Blog, “Tears of Truth”. To be nominated for this award category “Best in Show-Blog” means so much to me. It means that I am reaching people and they enjoy reading what I write. I truly pray that I am helping people and reaching people who otherwise wouldn’t get some of the information that I offer and share. In being a patient leader I have gotten to work with many wonderful people, made new friends, and have had chances to do research on bio similar medications and other subjects to do with many aspects of various illnesses.

This year, the 16 Wego health award winners will be honored at the 5th annual patient advocacy summit in Washington, DC October 23 and 24th, 2017. I would love to be able to attend this advocacy event and collaborate with the industry leaders. If you’d like more information about the summit you can learn more if you Click here

I am now looking to my incredibly supportive network to help endorse me for this award. There is an easy way to endorse it only takes seconds of your time!  Click here to be taken to my Wego Health awards profile where you can click “Endorse” under my nominee photo.

If I had ever supported you, made you laugh, or inspired you to keep fighting-please consider endorsing me for this award? In advance, I would like to say once more “thank you so much”. Without you I wouldn’t have a popular blog and I wouldn’t be nominated for this honorable award.

@WEGOHealth

Please Help This Blog Win?


Hello Luvs!

This year for the WEGO HEALTH awards, my blog/this blog……our Blog; “Tears of Truth”, has been nominated “Best in Show””-Blog”! It was nominated through the WEGO Health awards website! We are so excited! Please just take a moment of your time and endorse my nomination by visiting the ensure below and just click on “endorse Suzanne Stewart”. I need your help to walk with me through this every step of the way, if you’d do me the honor? I did not participate last year when I felt that I couldn’t beg people to vote for me. But this year I feel like this blog deserves the award and “it” has been nominated. It’s not so much “ME”, but this Blog, that deserves the nomination and maybe, hopefully the award for “Best in Show-Blog”… here’s the link to endorse this blog! Thank you! So much! Please also “share this link”….thank you so very much, from the bottom of my heart!

 Here’s the link:

https://awards.wegohealth.com/nominees/562

What You See Is Not What You Get!


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Having Chronic Pain is unlike the pain following a surgery or even the pain after an injury. Many things about Chronic pain are not seen with our eyes. There are so many “invisible diseases” that involve living with exhaustion, illness and pain.  Many people think they know about these issues. If they’ve not witnessed life with a chronic pain patient, then they truly cannot understand or know what we live with on a daily basis. People are misinformed and sometimes quick to judge persons living with pain day after day.  Some think we are lazy, anti-social or just rude.  We cancel appointments, shopping trips and dinner dates with our friends and family. But we are not any of the above. We are people who have hopes, dreams and inspirations; just as anyone else. The issue is that our futures don’t include many of those same things after we become chronic pain patients.  We must grieve our losses and find new hopes and dreams.  This is the price that we pay for living with chronic pain 24/7/365.

I am still “me” underneath the chronic fatigue and pain.  I still want to talk with you and hear about your day, family and dreams.  In between the days of staying in my PJ’s and lying in my bed or on the sofa, I try hard to be a part of your “normal” world.  Some days I may even look “normal” to you. In fact, most of the time, I probably appear to be “just like everybody else.  I try to wear nice pants, cute dresses and sometimes I put on make up, just like you do! If you visit my Social Media photo feeds, you’ll see someone who “looks normal”, holding onto her grandchildren’s hands, smiling and actually joyful underneath the pain somewhere.  Sometimes even sitting on the floor with them.  You may read about me “babysitting” for our grandchildren; or going out to dinner with our friends.  You may even want to “judge” me by saying to yourself “How can she be that sick or in that much pain, if she’s doing all of these things?”  If you think like that, I can’t blame you because I once thought those same misinformed thoughts.  What you don’t see, is how I get to the floor or how long I am actually down there.  You don’t see my husband helping me (and doing most of the work) to get me up and off of the floor.  You don’t actually know how long I am down there or how many pillows may be behind my back. You also don’t know that I most likely stayed home in my pajama’s all day until 4:00 pm when we had dinner plans at 5:15 pm.  You also aren’t privy to the information of how long I might’ve stayed at dinner and “if” I was able to even eat anything that night.  Not only do I have several chronic pain illnesses, but many of them are invisible to you. They are very much visible to me. I can “see” them with each new line on my face and each new grey hair that gets covered up each month. I can’t only “see” the pain, but I feel it with every part of my being. It doesn’t go away, not ever.  Though some days are better or worse than others; the chronic pain of “Invisible Disabilities” and “Invisible Illness” is apparent to me every minute of every day.  Often I fight with myself about going to sleep at night.  Do I try to go to bed at a more normal time and maybe get 4 -5 hours rest? Or do I stay up until I drop; then fall asleep quickly and wake up in just 2 or 3 hours?  If I sleep more than 2 or 3 hours, I will awaken and cry.  Whether it be inner tears or outward ones, I will cry from feeling as though someone set my body on fire due to the CRPS. I will have tears from feeling like my neck and back are broken from the Degenerative Disc disease, Spondylosis, Scoliosis and/or multiple herniated/bulging discs in both my cervical and lumbar spine; not to mention the Chiari malformation I in my neck. Yes, if I move or get up before I’m ready, I definitely will cry.  It’ a routine that we have, you know?  My husband gets up at 6:00 am every day to give me my medicine; just so that I will be able to get up with him a couple of hours after that. He is my hero.

You cannot feel Gastroparesis, but if I eat one wrong food at dinner time; I will be up all night and very sick. My husband, who is also my soul-mate and my caregiver; knows all too well about these long nights.  I have worries, though he continues to tell me that they are unfounded; that he will get tired of all of this one day. It’s not much fun to be with someone who is constantly complaining about pain, so I try to keep it to a minimum.  But even to him, my pain is not invisible.  He knows the grimace of  CRPS and the fidgeting of the intensifying pain on an outing.  He knows that when I start rocking back and forth, it’s his cue to step in and say “time to go home”.  I know that my own family gets frustrated with me because I’m not able to babysit “alone” or have kids dropped off on the spur of the moment.  I cannot commit to babysitting for the little ones under school age for a week.  I’m not able to help take the load off of my children and their spouses, so that they can go on a trip. There are many things that I cannot do but there’s so much that I still have to give.

Please don’t judge what you do not understand. If you think you know, then go and read some more about chronic illnesses and pain. Spend time with someone like me and see how impaired the activities of daily living have become.  I’m probably not always much fun to hang out with, but I’m still “me” inside.  Digging through the pain and exhaustion, there’s a real person inside, who still has a heart and feelings that can be hurt.  Feelings that are probably more fragile than most because of the judgements, stares and hurtful words that come from some people who are misjudging and misinformed.  I’ve had nasty notes put on my windshield, that would make anyone cry.  One note said this “How dare you take this HC parking space! It must be a “mental thing”! I hope you become handicapped for the rest of your life, so you know how it feels to have someone take your parking spot”! Yes, indeed; that was the note left on my car at a little market right across the street from my house.  I had my cane in the grocery cart and the little blue HC parking permit on my rear view mirror.  But I was still judged and torn to shreds because of the way I look.

Please know the difference between being able to stand for 20 minutes and being able to stand all day.  The difference between having the flu and feeling that same way for many many years! Try and understand that what I might be able to do today, I probably won’t be able to do tomorrow.  Don’t say “Oh you look happy and healthy” or tell me that I’m looking or sounding “better”.  I’m just trying to cope with the life that I have been dealt. Please don’t judge me if I try to do awareness events or fundraisers for the causes of my illnesses and those of my friends.  Though I may “do” these things; I definitely know that I will “pay” for it later.  I will rest for days in between and sometimes weeks.  But I deserve to do things and to try and be happy; even if it is in between the pain at its worst and best.  Please know that getting out and doing things doesn’t make me feel better, it actually makes me feel worse for days at a time.

Chronic pain is hard for you to understand. It wreaks havoc on the body and the mind.
It is exhausting and exasperating.  I’m doing my best to cope and live my life to the best of my ability.  I ask you to bear with me, and accept me as I am.

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No Competition, No Winners!


We each feel like our own pain is the worst and that what we are going thru is the hardest and most devastating. In a way, this is partially true. That is because when it is “YOUR pain” then it IS “YOUR” WORST.  What I mean is that everything can be challenging when you feel like your own story is the only one that’s difficult like this.
Consider Brian Greene’s idea, as he writes about the string theory in clear English : He points out that, “in an infinite universe, each of us is at the center”. Exactly, my point and what I’m trying to convey here, today. For example, one person may feel that whatever they are going through with chronic pain is the worst pain they’ve experienced in life…ever!, The patient may feel this way due to the possible negative outcome of certain treatments or the lack of treatment and/or empathy, or understanding. One person could feel that their situation is the very bottom of the “pit”. The true “fires of Hell” very well may be his/her situation. The outcome could be a “loss” of the use of his legs; to him this is the worst thing that he could imagine. For another pain patient, or an RSD/CRPS sufferer, she may be afraid and feel that her suffering is the hardest that anyone can imagine because RSD/CRPS is #43, which is so very high on the McGill pain scale. She may scared because she is so young and has her whole life ahead. For her, this disease is taking so much; it is a thief of sorts! She could lose so many possibilities in life.  Maybe she has indeed lost so much already? What about the younger ones who’ve never been able to experience true love or the dream of being a mother and holding that baby for the first time? Maybe the dream is something different but what if they don’t ever get to do the things that I got to do prior to my pain? There is much to lose at each and every stage, when your life gets harder, the pain gets worse.  It even gets more difficult to find things that make you smile again.

Today it feels to me as though life for patients with chronic pain has become much more challenging. We have to worry about going to different specialists and having a legitimate “Pain Dr.” now instead of just going to our General Practitioners or Primary Care Docs. We must have and visit a Pain Dr. every month or 2 months, if we are on any kind of Opioids. Today we must do urine tests, the million questions (yes, I’m exaggerating), the signature or the signing of a contract to prove that we will not seek out any other Dr. or even get any other medications for pain from any of our other Physicians. Therefore, if we have a surgery, our pain meds must be authorized by our current Pain Physician, before we can get them or take them! The new “CMS strategy for use/misuse of Opioids” is happening as I write this article . Let me explain.  This is the Centers for Medicare and Medicaid Services. They intend to curb opioid misuse and abuse. But in the meantime they could cause needless suffering to many of our most impoverished and elderly persons in pain. There were posts made by me and Letters sent out by the U.S. Pain Foundation & RSDSA, regarding this. There were tweets, posts, letters etc. going around to get emails out by Friday, March 4, 2017;  to help change some of this strategy before the deadline at midnight Friday. The new Strategy doesn’t go into effect until April 7th, 2017, but we needed many emails to go out.  We needed these emails to help fix what may be a problem for many chronic pain sufferers who rely on Opioids for pain relief.  (*For more information visit: The U.S. Pain eNewsletter, Feb 1, 2017 “CMS publishes new strategy to combat opioid misuse”)!  There are obstacles coming toward us from all directions it seems right now. There’s also the way that Pharmacists can be “the Dr.’s” now and they, along with our insurance companies, can override what our own physicians direct us to take for pain medications. Things are changing and getting more difficult for many persons living with high pain illnesses. I have had people come to me in the groups that I administrate. They have asked me “What can I do? The pharmacy wants me to come back every 5 days to get Opioid pain meds that I’ve been on for years? I cannot drive and it’s an hour away from my house! What can I do?” I feel terrible because I can’t “fix” it for them. I’m writing letters, tweeting & emailing, but no one is listening to me either; not yet. I don’t mind if they change the way the medications are made, such as changing it so they cannot be crushed, broken or changed in any way into another form.  That’s fine with me because I am a legitimate pain patient, who takes my pain medication responsibly at the right times and on the correct dates. But God forbid if you do anything different or wrong! I was questioned because my pharmacy took 6 days to get my medication in!  My Dr. wanted to know why “I waited 6 days to get my pain medication”. I felt like a criminal or like a scared child! This was no fault of my own and in fact, my husband tried to check around but nobody else had my medication in during those dates either. I was punished because I’m the one who started getting very ill for those 5 days! I had to go through that because even though I go to the same pharmacy monthly and for the same medications; they didn’t have my specific  medications that month! When I returned to the Pain Dr. appointment, of course he wanted to know why there was a “lag” in time for picking up my meds. It’s just getting harder, more scary and more confusing. I’m tired and I can see why people feel like giving up sometimes. But we cannot give up! I will not ever give up!  I have to keep on fighting for my rights and for all of our rights!

After my heart surgery in February, 2013; I found out that my RSD/CRPS had traveled to my heart as well as my whole left side. I have so much pain in my neck, knees, lower back, hands, feet, arms, legs etc, from several of chronic pain illnesses or issues. At times, I’m afraid, sad and I get lonely too. But I know that this is only “MY” worst, not anyone elses. I only truly know my own private pain. We all have our own health and pain issues that are specific to each of us. While I can’t take the pain “journey” for you, I can go through it “with” you in a personal way. I can be your friend, listen to your heart and because of computers, I can virtually reach out to you via my groups, my blog and even articles.

Every one of us has real fears, anxieties and true pain.  I recently read a story about a poor woman in terrible pain with great fear. I do understood her fear (to a point) and her pain (only from as far as I can draw from my own experiences). Then I read about another, younger woman in the same kind of horrible pain. In both of their personal stories, deep fears and pain came through. The younger woman feels that she has so much to lose, as she hasn’t even started her life yet. Some of us have already had our children and we’ve had “real” jobs or a career for a while. We may have even been through some good &/ or exciting adventures prior to becoming chronically ill? Maybe we’ve done some fun things in our lives or accomplished a goal? Some of the younger people living wth chronic pain have not been able to achieve any of those things, not yet, anyway. What I see through my patient advocacy work with chronic pain and Invisible Illness; is so much love and compassion. Sometimes it is dampened and even overidden by our real fears and the feeling that we are “the person worse off”. We each may feel that “it’s not fair”  or that our pain is “the worst”.  But it is our own personal worst; which is different for every individual. When I think of pain in this way, I realize that we all have essentially the same inner feelings. If I can stop thinking of my own situation and my pain, and step back for a moment; I’m better able to  empathize with others who live with pain. I know that many of us share the same inner feelings of solitude with our illnesses at times.  We  cannot give up on ourselves or each other. We must not stop trying to fight for a life that we each deserve.

Seventeen Positive Resolutions for 2017!


 

 

Wow, I cannot believe that 2017 is upon us already! Only a few more days and I will have gone through another year with unrelenting nerve pain from systemic/full body CRPS and several other painful illnesses. I have a choice to make, this New year, this month, this week and today. I can choose to get up and start again, to make positive choices and be a “doer”. On the other hand, I can go back to bed, be negative and be a “downer”.  That doesn’t mean that some days aren’t going to be “downer” days.  But we truly must try our best to make the most of each day.  I have decided that some of us may need help getting started with the New Year and those pesky resolutions that we seem to start and never keep.

These are the kinds of things we can all do to help ourselves and each other to have a better year than the one or one’s prior.  Here is my list of resolutions for the New Year, 2017:

  1. First of all, when you start to think more positively, you will become a more positive person.  So first, and foremost start to think more positively.
  2. When  you feel that you are having an especially bad day, take the morning to rest and recuperate. Try to do at least one thing in the afternoon, that will make you feel that you have accomplished a minimum of one activity each day.  This activity may be as simple as taking a shower. When you deal with chronic illness, taking a shower can be very draining and therefore, this is an accomplishment!
  3. If you are a woman and you used to wear make up, try putting on making up once in awhile. If you are a man, then try to shave once in awhile and put on some after-shave, even if you live alone. You’ll be surprised at how different and revived it’ll make you feel.
  4. When you wake up in the morning, make a choice for yourself that this will be a “good day”. If not a “good day”; then at least try to make it a little bit better. The more we think positively, the better we will feel. This will lower Blood pressure and negative thoughts etc.
  5. whether you are with a husband, a partner or living alone, try to be more respectful of the other person or people around you. Remember that they are suffering your illness(es) as well. They are missing out when you cannot go with them to places and/or events as much as you are missing out on going. Just be mindful of how your actions cause reactions in the ones that you love.
  6. Get up and out of bed each day. Even if it is only to do a small action, such as moving onto your favorite chair instead of lying in bed all day. If you have a pet, sit with them in a different area. Give yourself different sense of scenery. You’ll see that just getting out of bed can make you feel more positive.
  7. Try each day to either watch a funny movie, read a good book or if you cannot get into this kind of commitment, then find some good articles on the internet to read. These things tend to keep our minds sharp and help with a positive mind set.  Don’t read only the “bad stuff” in the News; or articles about your illness(es).  Try to get “lost” into a fun or funny book /movie or a drama.
  8. If your memory is a bit foggy due to illness(es), try making a list. You can make a list of things that you want to accomplish in this New Year if you want to think long term. If you want to look at this in a shorter time frame then make a list each day, of things that you want to accomplish during that 24 hours. Check off things as you do them.
  9. Try to learn at least one new skill this year. There are so many things to do and many that we can do even if we are not feeling very well.  There are things to do that pass the time, which are more positive.  Some examples of  larger scale activities or skills might be:  sewing, making jewelry, cooking,  knitting, crocheting or learning a new language.
  10. Try new activities on a smaller daily scale, such as:  the new adult coloring books, go to library or get someone to go to the library for you and sign out some magazines and read through different articles, make a scrap or memory book or organize your photos. You could even do something as small as starting a new board on Pinterest.
  11. Remember that “junk drawer” or closet that has been cluttered up all year long? Clean those out and organize and you’ll be surprised at how much better you will feel! A weight seems to be lifted when we start to organize or “de-clutter”! If you cannot do it yourself, ask for help! Many people do want to help us if we allow it.
  12. Join an organization or group that does something good for yourself and others. You could join a support group or start one for a number of different causes.
  13. Volunteer at your local humane society or animal shelter. You can do tasks as simple as petting cats and /or dogs. Give love to an animal and see how that makes you feel more energetic and positive.
  14. Volunteer to read stories to children at a day care center or at your local library. That is a “sit-down” activity that will make you feel useful and children always make us feel loved.
  15. If you cannot get out of the house, then try to do something online. Volunteer to be a patient leader and do positive activities online such as positive Meme’s on Facebook or tweeting positive affirmations for yourself and others.
  16. Make your surroundings seem new, different or better by something as big as cleaning, painting (even just a little bit each day), putting up new pictures or rearranging your furniture. Get someone to help you if you need that. On a smaller scale you can do something as simple as changing your haircut, color or paint your nails. If you are a male, you can buff up your nails, clean them and put on some clear polish to feel and be more groomed.
  17. Lastly, you can find several organizations that need you. There are many church’s, libraries and Senior centers that would love to have you come to visit even just for an hour once per week. If you cannot get out of the house, then try looking into being a Chemo-angel (you write letters or send small gifts weekly to persons going through chemo-therapy). You can start your own “sunshine” type of group and send letters to those who are feeling ill just like you and me. When you do something for others, it helps your own Psychological and physical health.

Above I have given you 17 “New Year’s Activities” for 2017.  If you can force yourself to get up each day, get out of bed and cleanse your body and your soul; you will be one step closer to feeling more positive.  If at all possible, do something each day that makes that day just a bit brighter.  If each day is similar and we do all of the same mundane things, then we will get into a “rut”.  Get out of your “rut” and think of someone else. You will be amazed at how good you’ll feel just by giving some of yourself to someone else’s cause. There are many excuses for not doing, going or getting out of bed. So many of us have chronic daily pain that make it difficult. I understand that because I am one of these people. But I have found that by joining organization(s) in which I have control of how much or how little I have to contribute daily; I can lower my pain if only for a few moments or hours.  By giving of myself and helping others who are also in pain, I can do so many things! What I’m trying to explain is that these things pass the time. The days can become so long when we leave ourselves alone and vulnerable to our own thoughts.  Keep your thoughts as upbeat as possible. You’ll be surprised at how much more energy you have when you are positive. It takes more energy to be negative and many more muscles to frown than to smile. Make someone else smile and you will be a happier person.

I don’t mean that you have to do something every single hour of every day. Of course we all need some down time. We need our naps & restful periods to regroup,recoup and revive ourselves! Have a Blessed New Year and I will be praying and hoping that you have a healthier, more positive 2017! When all else fails, put on some headphones, turn down the lights and listen to your favorite music! See you in the New Year!

Christmas “Present”


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Hello Luvs,
It’s been a rough few months but now it’s time to get to the “present” and think about the holidays. Even though Christmas day is done it’s still a great time to think about the “true” meaning of the holidays.
We had a wonderful “pre-Christmas” family get-together this year.  It was at our house last weekend before Christmas! It was a wonderful and awesome family time together. I got to have both of my daughters, their husbands and our 3 granddaughters all together under one roof! It was awesome! I got to sit out in my rocking chair, in the living room; while rocking our youngest granddaughter to sleep. She was so quiet, serene and held onto my finger. While rocking her to sleep, it was wonderful listening to the chatter throughout the house. Everyone was happy, talking and laughing.  It’s times like these and occasions like this that are the foundation for building the memories we wish for ourselves and our families.
Now…I know the word “family” can hit a nerve with some people, especially during the Holiday season. But you know that you don’t have to force yourself to sit in a room filled with people who: put you down, denigrate you, degrade you, call you names, hurt you and don’t love you the way they should. YOU are worth more than this! Why people do this and complain about it, I will never understand?  A “family” doesn’t have to be biological. Your family might be a group of your chosen friends.
I’ve come to the conclusion that we put too many expectations on the Christmas season. This is why so many people get more depressed, stressed and the suicide rate is even higher at this time of year.
If you have read any of this blog from the beginning, then you KNOW that I have some reasons to NOT like Christmas time and/or the holiday season. My mother died on December 22, 2002~and my grandmother died on December 30, 1986! I’ve got health issues and most of all chronic intractable pain! I have a progressive, most painful Neurological and autoimmune disease called “RSD/CRPS”. It is also known as “Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome”. Mine is systemic/full body, disseminated and severe. I have Dysautonomia/POTS/NCS and you can just *Google any of those if you wish.(If you have any questions, please message me because I can send you in the right direction if you are suffering from any of these illnesses and I may be able to help with some others too!)
My message to you this holiday season, is to try and NOT go if you don’t HAVE TO GO!~ Don’t spend time with people who don’t deserve you. Concentrate on those that are there for you all of the times, good and bad. If you must be alone, you can turn on music that is calming. You can watch Holiday movies or even drama, adventure films or comedies. If you feel like you want to get out of the house, it is OK to go to the movies by yourself. They are open on Christmas and New Years day.
Spoil yourself and sit with a comfy blanket, read a good book or play with your IPAD, laptop or your smart phone. You may choose to color with markers, crayons or chunky crayons (if your hands hurt badly) in those great new adult type of coloring books.  You may choose to bake,  do crafts or make a scrapbook.
The other thing is this….if you really have someone that you love and you want to be with them but you can’t possibly be there. That’s what SKYPE and /or FACETIME are for! We have friends in Scotland, Australia and Singapore and on Christmas sometimes we turn on the Face time or Skype and we open our pressies from each other IN FRONT OF EACH OTHER! Isn’t that way cool? Technology has become a life saver for many people.
If you are full of bad memories and they are clogging up your mind. Try to think of at least one or two good memories that you have?? I remember our church program one year when they had videotaped children seeing their Military parents come home for Christmas! These kids were in awe with their mouths as open as I’ve never seen before. They were genuinely excited and totally surprised to see their father or mother. They hadn’t thought they’d be seeing them and suddenly that parent walked into their classroom or someplace where they could surprise them well! The looks on their faces were precious and priceless!
I have a GOOD memory,that I want to share with you today. Much of my blog is about some of the bad things that have happened and seems to continue to happen to me throughout my life. But today, I want to share a happy memory and I hope it will help you through your holidays that sometimes can feel “empty” and /or “hopeless” when you are not celebrating as the rest of the population “appears” to be celebrating. Just remember, you have to make your own atmosphere and do what you can to stay “afloat” and not get too sad. There are some suggestions above, that I’ve given you. There are others in books and blogs and websites, you just have to go and look for the help you need.
Here is my happy memory:  When I was about 12 years old, I had made friends with a “grandma” type lady down the street from us. Her name was “Mrs. Usitis” and she invited me to tag along with her to Pennsylvania from Michigan where we lived. My parents allowed me to go because I was going with her and she was taking me to visit with her grand niece who was just one year older than me.
We arrived and I stayed with the young niece and her parents and Mrs. U. stayed with her sister and brother in law. I had a wonderful time and they treated me very well. But I just didn’t know them well, yet..at the time. I had never been away from home or even really never spent the night anywhere before that. I was homesick. I missed my bed and my mom and dad.*( I don’t have a ton of bad memories as a very very young child. I have some and some that I thought were “normal” and I’ve since found out that they are not “normal” and they were downright abusive even then, when I thought my family was “normal” and that I was the “bad one”.)
My mom got my phone calls and I couldn’t sleep or eat and I felt really far away from anything I knew.  She spoke to a cousin of hers in Pennsylvania and they said that the friends who I was staying with could bring me to their home. They thought if I was with “COUSINS”(even though I’d never even met them), that it might help me feel more comfortable. I still felt homesick and was crying and wanted to go home, because I didn’t know them either. They were as nice as they could be to me!
As I was walking around their house one day, eating a Popsicle, I heard the doorbell ring. She opened the door and there standing in the doorway, I saw my “DADDY”!!!(My brothers came too, but I didn’t care so much about them being there, as they drove with dad to keep him company…ha ha…). Back in those days, I felt that my dad and my oldest brother were my “protectors”. At the age of 12, in my head, I thought that I was “bad” and that everything that happened at our house was my fault. At that time, I felt that my mom was the more abusive person in the household. As you grow older and get the “help” or much needed therapy; you find that reality is not what you once thought.
I saw the door open and my dad was standing on the front porch. At the same time, I threw my Popsicle out into the abyss of “wherever?” and I ran as fast as possible and jumped up into my dads arms! OH….oh how I love that memory!  He came to rescue me from nothing whatsoever that was “bad”, but just my being homesick for familiar surroundings. I had led and have really led a very sheltered life especially back then. We didn’t go on vacations, I didn’t go out to dinner with my parents or family; rarely even on special occasions. We pretty much went to school and stayed home. So you can imagine what a “culture shock” it would have been for me at that age and after never being out of my state OF Michigan. I mean…I went on my first airplane ride, with a neighbor lady, not someone I knew REALLY well.(But they were the nicest people…they even fed me when they knew I was hungry because I wasn’t allowed to eat much at home, at all.), and was going to stay maybe 10 days to 2 weeks? I cannot remember all of those details, but the best part of that story was when I threw my Popsicle wherever it went, we’ll never know!! LOL ….I ran and jumped up into my “daddy’s arms”.
Now THAT’s a good memory, huh?
I just wanted to reiterate that you don’t have to “choose” to be down, lonely ,sad etc during the holidays. I try to remember that life goes both ways.  There are people who have it much better than me, and there are also those who have a much more difficult existence than I do.  Sometimes it doesn’t feel like a choice because we can get into a “rut”. When pain is all you know and you feel it day in and day out.  When you hurt no matter if you’re lying down, sitting in a chair or trying to walk a bit. It’s hard to not concentrate on the bad stuff. It’s sometimes difficult to see others who are not in pain doing the things that we want to do. But Life is only 10% what happens to you and 90% is the way you look at it, or your own attitude! Try to relax, breathe and enjoy whatever moments that you can and don’t expect anything and you won’t be let down!
Happy Holiday season to everyone. Please pray for our Soldiers who will not be able to be anywhere near home for the Holidays, with their own families. They are out fighting for our country and our lives, our children and grandchildren’s future and lives too!  Pray for them, for the young men and women who are fighting as I write this blog. My friend, “R”, has a son who is in Afghanistan right now. He left just a month ago or so? He is one that cannot make it home for Christmas. So let’s pray for “R” and her son, “S” and anyone else that you’d like to say a prayer for at this time and during this season of Jesus’ birth.

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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.