The Happy Challenge


The suffering of the chronic pain patient can be mostly silent, somewhat invisible.  People will sometimes ask “where are the bruises, the medical machines or the marks on your body”?  Let me explain about the “hidden bruises”, the “quiet bleeding inside” and the sporadic silence.  The “silent screams” are more often quiet because we are seen as complaining if we are too vocal.  When we don’t say anything or we look “fine”; then we must be Okay because we appear to be fine on the outside and we are not complaining. We may verbalize that we are tired and then they say “Oh yes, I’m tired too! I know what you mean. It’s normal to be tired at our ages. You just have to work through it!” They don’t realize that we have to “ration our spoons” throughout the day (see the “spoon theory” by Christine Miserandino, at http://www.butyoudontlooksick.com).  There’s no sense trying to explain it to them because it is not a battle of words that we have the energy to argue about.  Most people who do not live with and deal with daily chronic pain, just cannot understand or fathom the idea that just taking a shower and getting ready for our day, can use up so many of our “spoons” or so much of our energy.

We may agree to attend an event or a family outing if at all possible.  We don’t intend to break a “promise” but when we go against our own best judgement; we may then suffer.  Sometimes we go, but cannot stay very long; they say we are “phony”.  We try to hide how we are feeling, but sometimes even with our greatest strength, we have to submit to the pain and fatigue. We need to listen to what our bodies are telling us.  That’s when we start losing friends and family members. We start getting invited to social events less often. Though we really wish to be invited and truly want to go, if we possibly can.

Next, we have the other chronic pain patients who have knowledge of the “Spoon Theory” and some of the similar feelings that we all experience daily.  Then for one reason or another, maybe because we are not all at the “same place at the same time”; we may be judged again by our peers. It hurts, because we all experience the chronic pain and fatigue, but we may each handle it differently. I try not to judge anyone for doing what they need to do to take care of themselves. When you only “know” someone through social media, you don’t really know them or their daily struggles. You only know what they choose to share.  It hurts when someone judges me for appearing to be active on social media. It’s true that I am an Ambassador for the U.S. Pain foundation, I’m a freelance writer, a blogger, a mentor, a patient leader for WEGO health and I am a health advocate. But I don’t have to do anything on any day or days, if I don’t choose to. I may be in my recliner for 20 out of 24 hours some days. But that doesn’t mean that I cannot encourage, counsel, connect or give TLC to others.

If I do an event, then I am literally “down” for several days afterwards. It is worth it to me, just to stay as positive, helpful and useful as I possibly can be.  I also don’t admonish others who are not in the same place as me.  I remember times when I didn’t feel as happy inside and I still have periods like that. The ups and downs are pretty normal within the lives of chronic pain patients.  Sometimes when in horrible pain physically and/or mentally; people generally think that others should be able to see or feel things the same way as they do.

Now, I have a different strategy for dealing with the pain. I utilize every possible venue to express my own pain and my reaction to the changes that it has made in my life and our lives. I am not always positive, nor am I constantly happy and upbeat. But I do try to be positive as often as possible on Social media. Sometimes people’s lives depend on it. Naturally, we all have our darker times; but I try to rarely share those publicly.  I’m not saying that I’m right or this is right for everyone. I’m just sharing how I deal with my own personal pain.

I felt the need or the urge to write about this because I received a private note from someone. It really hurt at first and I was crying. I participated and usually do participate in the various online events and “photo challenges”. It may be for U.S Pain foundation, for WEGO health or for RSDSA etc.  It’s just therapeutic for me and I enjoy being a part of these online events. If I can cheer up one person then it is worth it for me.  If I can show one person, a light at the end of the tunnel, then I have given them hope.   Someone sent me this private message and it said;   “Not to start anything but….why do you devote so much time and trouble to your blog, your websites, groups and writings?  Why don’t you just deal with the pain, like the rest of us? YOUR “Happy challenge” was yours not mine…. I guess we don’t see it the same way. I just try to get thru the day w/the least amount of pain possible and thank God when I awaken the next day.  No drugs, no docs, just PT and pain shrink….”.  Like I said, at first I cried and I was hurt by these words. For a few moments, I felt like it was and has been all for nothing.  But it’s not for nothing. We are not all in the same place at the same time.  There are stages of chronic pain, just as there are stages of grief; they are pretty similar. But one thing for sure, I don’t put others down for taking or not taking medications or if they choose to use an SCS or a pain pump (for which I’m not a candidate, due to an Immune deficiency disease). I feel strongly about doing whatever is necessary to achieve the best quality of life that I can possibly have.  I don’t choose to go to as many Dr’s as I once did. I try to just visit the specialists that my life depends on.  I don’t just “wait for the next day to arrive”.  Though I do thank God every day, for giving me life. I also don’t do PT after 9 years of doing it and I don’t go to a “pain shrink”.  But that is my choice.  I do take a normal dose of Opioid pain medication, of which my life “depends on” now.  I’m not “addicted”, but “dependent” on this medication. But guess what? I was able to attend my youngest granddaughters’ first birthday party because of this.  I GOT the pleasure of attending a U.S. pain conference this past weekend.  I got to do it and got through it, because I am able to take a pill that helps me get through these events.  Yes, of course I suffer still, for a few days afterwards, but I have the memories and so do the “little ones” and the other people who I got to spend time with. I also got to experience other persons like myself, who want to make a difference and try to help in the world of chronic pain.  It’s not for everybody and that’s OK.  We are all different, it’s supposed to be that way.  I don’t particularly enjoy things like gardening or cooking. Some people couldn’t imagine life without those things. I am me and that is OK.  I cannot please everyone and it’s alright.  I’m not crying any longer about the message. Instead I feel badly for the person who wrote it.  They are in a darker or more sad place than me. I will be there for them if or when they are ready.

It’s a difficult kind of life to explain when you look fine on the outside, your photos look like everything is “normal” on the outside; but my body burns and aches even through the smiles. I’m just like some of the other chronic pain patients, but I choose to outlet my pain in different ways. Nobody says that my way is the right way, but it’s the right way for me to express my pain and try to help others in the process.

 

 

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

It’s WEGO Health awards Time Again!


Hello Luvs,

I’ve missed writing to you with that salutation! I’ve been writing so many of my posts as articles for the Ntl. Pain Report, that I’ve not had much chance to get close and personal with you!

I posted my newest American Sign Language video for you because June is PTSD Awareness Month.  This is the last day of June 2017, and I wanted the song “Concrete Angel” done in ASL to be posted for you.  It was to honor the time of year for PTSD Awareness and all of the abused children and people of the world! I don’t know if you’ve read any of my private posts or more posts towards the beginning of this blog? That’s where I have my posts about me being abused.  If you’d like to read about my journey and possibly the parts that are private, please just comment or message me and I’ll send you the password so that you can read all of the private posts!

I also want to let you know that this year once again, I’ve been nominated for a WEGO health award. I’m always very honored to be nominated. The only reason that I didn’t participate last year was due to the rule of having to ask people to vote for me daily on Social media. This year that’s not a requirement, so I will possibly ask you just a couple of times, to vote for me this year. Mostly I’m asking and very excited that We’ve been nominated for “Best in Show BLOG”!! I’m so excited about this because it’s about this blog and being nominated for an award! I’ve posted the link to vote for me on the menu to the right and I’ll post it here now again.  If you could find it in your heart and if you have a moment to vote; also if you enjoy this blog, please vote for this blog at:  https://awards.wegohealth.com/nominees and you may look for me by photo, name “Suzanne Stewart” or my Twitter handle @RASEforCRPS.  Thank you so much !! Also please feel free to share my nomination so that others may also vote for this blog! 

I won’t ask you again to vote for us, on my blog. I may post on twitter or Facebook and ask people to vote a couple of times. I’m grateful for anything! Again I bow to you and say “thank you!” 

Sincerely,

Suzanne Stewart 

https://awards.wegohealth.com/nominees

Why I Wish To Be An Ambassador for U.S. Pain Foundation? My Pain Journey…


 

**I RECEIVED THIS RESOLUTION FROM MY TOWN OF CANTON, MICHIGAN,  FOR “PAIN AWARENESS MONTH” -SEPTEMBER 2016

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***I RECEIVED THIS PROCLAMATION FROM THE GOVERNOR OF MICHIGAN, RICK SNYDER FOR “RSDS/CRPS AWARENESS MONTH -NOVEMBER 2016 AND COLOR THE WORLD ORANGE DAY FOR NOVEMBER 7, 2016”

photo-sep-19-12-54-05-pm

From ASL Interpreter To Hearing Impaired in 10 seconds


Hello Luvs,

I truly try not to complain or ask for help often; but I’m having a rough pain night… When I feel like this I find something that makes me feel good and I try to do it, read it, play it, sing it, sign it Etc. Tonight I can’t sign it so I watched myself sign the ASL cover for @Hold On” by Wilson Phillips… It did make me feel a little better if only for 3-4 minutes. Then I thought that I would share it with you! Because if I’m having a rough night, others must be as well. You see, I’ve tried to make some lemonade when life’s tosses lemons at me!

I used to be a sign language interpreter for the Deaf . I graduated from university with my degree in “Sign language studies / Interpreting”. I was a single mom (but I’ve been remarried now almost 20 yrs to my soul mate), worked full time at university of Michigan hospitals as an interpreter for patient services. I interpreted for Deaf students at 2 school systems “Magnet” Hearing impaired programs & at Madonna University in the classrooms.

In 2002 when a man ran a red light I lost so much: not only was my car totaled, but my body & my career. I suffer from chronic intractable pain. I’ve had multiple injuries, surgeries (8), a heart attack and a stroke! I suffer from Dysautonomia / POTS / Autonomic Neuropathy, polyneuropathy in Collagen Vascular disease(like the vascular EDS), Arnold Chiari I, Sick Sinus Syndrome (with a pacemaker), S.C.I.D. (severe combined Immune Deficiency disease), RA ,OA & the worst is CRPS, or aka “Complex Regional pain syndrome”. The CRPS started in my right foot after a surgery. It then spread to my right knee, left foot & knee.

In 2013 I had what was supposed to be a simple pacemaker replacement surgery. It turned into a long & difficult pacemaker and pectoral muscle rebuild surgery! Afterwards at my 6 week post-op check up, my CRPS was reassessed  by my Neuro-Cardiologist. He said that it had progressed to” full body/systemic CRPS, severe & disseminated”.

My career was taken from me! I also suffered a TBI in the car accident and was in brain injury rehab for 3 yrs! Id been an Interpreter for the Deaf & Blind and now I’m hearing impaired & I have 2 hearing aids. I can’t process signals of spoken language the same as I could.  My brain isn’t able to switch the words into another language whilst coming out of my hands & arms any longer. That connection was gone or at least now too slow for interpreting!

My short term memory is “in the toilet”, according to my neuro-psych tests. My love and compassion for helping people, especially children, is still  in my heart but the injuries stole my career from me. I was so very sad! Then I thought “how lucky that it’s me because I know ASL fluently, I can read lips well & my long term memory is in tact. I remember all of the signs! Artistic ASL is emotional and beautiful. It has awakened the “old days” for me when I lived in Az & worked at school for the Deaf with Deaf pre-schoolers! It has reminded me of when I was involved in 2 Drama groups w/choreography in ASL to songs! One was called “Silent Impressions Productions”, we put on shows at ASU! The other group was called “Silent Praise”, & we Interpreted at church, did interpretive dancing & signed to beautiful songs at the Neumann center at ASU! I was lucky to still have my gift yet in a different way. Watching  songs done in artistic ASL is emotional and so beautiful.

I started signing beautiful songs again, which made something wonderful stir         inside of me once more & brought the sparkle back to my eyes!

I started a “You Tube” page (ASLSuzyQ) and a facebook page (I Luv ASL) for my ASL songs. thought that if I could be cheered up …then maybe I could cheer up others who are hurting, sad or both? So “Hold On”…Don’t give up and watch this & maybe, just maybe it’ll cheer you too!

https://youtu.be/cjrMvKpxge0

 

 

 

One Bloggers’ Reaction To An Attack On Pain Patients!


Continue reading “One Bloggers’ Reaction To An Attack On Pain Patients!”

People With Pain Matter


People With Pain Matter! This Video is about my Chronic pain, CRPS Story & other Info. As well! A plea re: Opioids and correct information regarding subject also! #peoplewithpainmatter #painedlivesmatter #KeephopealiveforCRPS ….Opioids don’t kill people!~ People Kill themselves when they take Opioids with alchohol and illicit drugs like Heroin. Pain Patients control their medications and not the other way around as in drug addicts. Statistics prove that most overdose deaths are not reported correctly to the public. Chronic pain patients are “lumped together” with drug addicts and we are NOT!