A Body Of Hope



Hello Luvs,

I was reading my news feed today, feeling very much alone in my pain. I have a wonderful husband who does so much and he’s my soul-mate. I have two lovely daughters and 3 granddaughters, ages 1,3 & almost 5!

We had the 2 older ones sleep over last night. So far we have only had the eldest spend the night. That was easy and awesome. I love them all the same! They are my little blessings. But now I’m in so much pain, that I read the following post with tears in my Eyes. I feel like I’m swimming against the current bcz I try so hard to be upbeat and as “good as I can be”! Today’s been really tough and I’m hard on myself ! This writing is beautiful and the writer is not only a long time friend & Facebook friend; but she’s a talented writer. I have reposted her writing here, to share with you her beautiful words. She has a blog called “A Body Of Hope”. I hope you’ll check it out! Without further hesitation, here’s Mary Mattio’s beautiful words:

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~If you’re having a bad day…this is for you
You have every right to feel overwhelmed, as though no one understands, maybe you feel afraid, or even hopeless. As far as I know, everyone living with long term illness understands these feelings. I know I do.

Illness, pain, long-suffering literally deprives the brain of the chemicals and hormones needed to feel happiness and at peace. It’s not pain or illness alone that causes depression, but the high levels of stress, constantly, over a long period of time that can inhibit the production of important nerve cells. The “optimistic” neurotransmitters like, serotonin, oxytocin, and dopamine are no longer in balance to counter the feelings of uselnessness, loneliness, and hopelessness. What might be a passing thought, thanks to the rigors of chronic illness, becomes a spiraling pit of despair. Pain gets into your very soul, and exhausts every resource. 

This month is my 13 year anniversary with chronic pain (RSD/CRPS). When I became very ill 6 yrs ago, after several more illnesses struck suddenly, I felt as though I completely disappeared. Illness and pain swallowed me up.

If anyone is reading this and is being swallowed up, then you know it’s the loneliest feeling in the world to watch everyone go on and live happy lives while you fight for your own life in the shadows. Being drowned by an invisible adversary can seem like a practical joke. Everyone is in disbelief it could be “that bad.” But truly, aren’t we all in disbelief that it’s this bad?

I want to tell you what your brain would tell you if she were allowed to work at her full potential. I want to share what your soul is crying out for that pain has blocked. 

You have a purpose, you always have. Your purpose did not end when you were diagnosed. A calling is not just a job, purpose goes beyond the walls of a building. You are meant to be. 

You are enough. You are just as worthy and amazing as you always have been. Even though you might feel weak, you are gaining strength of character, wisdom, and you are learning things from this battle that no one can ever take from you. Please don’t accept the lie that you’re a failure, you are not. You are in the midst of the fight of your life. We can’t allow ourselves to believe we are losing. If your daughter, son, or grandparent were suffering from the very same condition as you, what would you want to tell them? 

You can do this. Though you may be exhausted and even fragile right now, you aren’t even sure how you’ll go on another day. The pain is pushing you over the edge of what you can bare…but somehow you have risen to meet every single day before this. Remember every treatment, surgery, and frustrating doctor appointment. Never forget how many miles you have walked already. You have overcome so many impossible days. Just get through this day. Tomorrow is not for today. 

You are beautiful. Sometimes we lose touch with our bodies, to separate and protect ourselves. Weight gain or weight loss, hair loss or teeth changes, swelling or skin changes…. we can look in the mirror and see a complete stranger staring back. You may not look or feel as you once did, but you can still get to know this amazing, lovely, and beautiful person. You are worthy of love. (PS. it’s ok to take selfies even if you don’t look like your old pictures!) People love you for all of you. You don’t have to appear perfect, no one is.

You are still the same person. Illness has a tricky way of detaching us from the longing of our past, splitting us apart from the face in the mirror, and isolating us from our loved ones. Who we were can float away, and illness begins to take us over. You are still her! You are still on your journey. Your path, your life, your experience is no less meaningful than anyone else’s. 

One last thing that I think your brain would want to remind you… Things won’t be this way forever. Chronic conditions change over time. Life changes. Our perspectives change. Yes, any day your condition could progress and worsen. Or any day, you could begin to improve or go into remission. The truth is that we hear about progression and complications 10x more (TEN TIMES MORE) than we hear about people regaining health and wellness. There is no doctor or article online that can assure you of what tomorrow will hold. As much as your body and mind yell words like “incurable, degenerative, progressive, comorbidities,” instead let HOPE be your weapon of choice. 

As illness continues to speak its lies to us, we must scream back truth to ourselves so loudly that every part of us can hear!

-Mary Mattio

@abodyofhope
“The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they may both lead to the same destination.”

-Marion Zimmer Bradley

How Great Thou Art -ASL


A beautiful song was in my soul today! I went to church and asked if I could use the chapel! So this is “How Great Thou Art” sung by Carrie Underwood! I hope you get chills like I do!

ASL Cover “Something Just Like This” By The Chainsmokers


This is an ASL Cover song of a song by the Chainsmokers called “Something Just Like This”. I am hearing Impaired due to a Car Accident in 2002 and have vision loss and 2 hearing aids. I also live with several High pain Chronic illnesses, especially severe Systemic /Full Body CRPS or “Complex Regional Pain Syndrome”. I do this for enjoyment and Entertainment. It takes a lot out of me, but to me, it makes me happy. Please subscribe to my You Tube Page at ASL Suzy Q,…if you cannot find it, please Google ASLSuzyQ. I don’t have enough subscribers yet and once I do, then I”ll get to keep my name as my URL..Thank you so much!

My Pain Is Not Me!


People ask me sometimes “how can you do this? How do you do that with systemic/full body CRPS and several other high pain illnesses ? How can you go here & there when you’re in pain & you don’t feel well? Don’t  you get so very fatigued”?  I have had other chronic pain patients accuse me of “not having pain as bad as theirs”, because I try to do different activities.  Yes, I’m in pain daily, whether I stay at home or if I go and do a little something that will either make me smile; or where I can make someone else smile.  My pain is not me and I have choices to make. I can choose to use just my cane, walker, motorized scooter or my wheelchair. But every day that I am alive, I try to do something, anything. I don’t believe in letting the days go by without experiencing the taste, feel, touch, smell, sights & any sounds possible to enrich my life in any way that I can.  As recently as this past Summer 2016, I was diagnosed with S.I.B.O. and Gastroparesis.  These make eating unpleasant and going out for dinner almost impossible. But you notice that I say “almost”, because I still choose to go out to eat as a social experience with my husband and/or friends. I just choose wisely or have something to drink. I try to convince myself that it’s the experience of getting out and getting up.
Yes, I’m in pain and even the medications don’t take that away completely. Secondly,”yes”, I am exhausted after an outing, but it’s worth it because my bed, my chair and “my comfortable place” will always be there when I cannot do it for another moment. But my husbands hand, my (2)daughters love, the giggles, smiles & sweet hugs of my granddaughters; they might not always be there! I refuse to let fear, pain & fatigue ruin or rule my life!  There are those days that I do take to my bed or the couch….but those are resting days, in between the good stuff!

I have lost family and many friends, due to the fact that I may have to change plans at the last minute. As I write today, about trying to go places and do a few things that are enjoyable; I must reiterate that I do have to listen to  the chronic fatigue and pain when it tells me that I must not do another thing.  When it lets me know that I’ve “used up all of my spoons for the day (see the “Spoon Theory here:https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) and it’s time to stop” (for now). We all have to listen to our bodies, meaning that there will be days and maybe several in a row; when we are  unable to do something notable. But if I can’t go out, I do try to at least mingle or  socialize each day to keep up my spirits. Some days it is via social media and the support groups that I run.  Other days it can be hanging out with my daughters/granddaughters; or just sitting quietly with my kitty cat on my lap and my husband reading next to me.  I just try to do at least one small “social” thing daily.  Every person has their own way of being content or even happy. Some like to do Yoga, others enjoy reading or going shopping. I just try to do anything, no matter how small it might be; each day. Some days taking a shower and doing my hair is my achievement. If that’s all I can do on any given day, I give myself credit for doing “something”. It takes so much out of us, just to shower and do our hair and/or makeup. It’s incredibly exhausting when you fight daily pain/fatigue. Persons who don’t understand chronic pain would not be able to  understand it.
I refuse to let the “bad stuff” rule my life! I might get sad or down like everyone does from time to time; but then I pick myself up by the bootstrap and try again in a few hours, tomorrow or a couple of days! Pain and fatigue will try to win my battle but My heart and soul will win the war!

*Written by Suzanne B.Stewart-   6-11-2016 (chronic pain patient with severe systemic CRPS, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease, PTSD, A-fib with pacemaker for Sick sinus syndrome, long QT syndrome, Asthma, Dysautonomia/POTS, CKDII, Arnold Chiari Malformation I, long thoracic nerve neuropathy, h/o CVA & M.I., Degenerative Disc Disease, Rheumatoid & Osteoarthritis…plus multiple injuries/surgeries s/p a MVA in 2002- including a TBI & 3 yrs of TBI rehabilitation!)…

**I am a Health Advocate/Activist, Chemo-angel, card angel, prayer angel, special assignment angel, -Mentor for Newly DX CRPS patients, blogger/Writer, …..

 

A Letter From your CRPS


Hello Luvs,

I found this letter  on a CRPS support group. I never take from another site without giving credit to the author.  But this one says “author unknown”. I would like to give my fellow Chronic pain warrior, Sara W. Credit for finding it and posting it. I wasn’t sure if she’d want her name posted on my blog, so I only posted her first name and last initial for now unless or until I hear differently. I know we are all here to help each other and all of you! This was a pretty accurate description of this horribly painful disease or Neuro-Autoimmune disease! So here it is…& please feel free to share if it will help you to let your family and other healthy friends and family members to understand CRPS  (Complex Regional Pain Syndrome) better:


Hi. My name is Complex Regional Pain Syndrome… some friends who have known me for a very long time call me RSD or CRPS…… I’m an invisible inflammatory disease that attacks your sympathetic nervous system.

I am now velcroed to you for life. If you have CRPS you hope for remission but there is no cure.

I’m so sneaky–I don’t show up in your blood work, in x-rays, MRI’s can’t detect me, basically there is no test to prove you have me. There are only test to rule out other things.

Others around you can’t see me or hear me, but YOUR body feels me.

I can attack you anywhere and anyway I please. And, I will. Constantly.

I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and energy ran around together and had fun?

I took energy from you, and gave you exhaustion. Try to have fun now.

I can take good sleep from you and in its place, give you brain fog and lack of concentration.

I can make you want to sleep 24/7, and I can also cause insomnia.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

I can cause one limb to change color, look bruised, feel super sensitive randomly for seemingly no reason.

I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.

OH, and just because I started off in one part of your body, don’t think I can’t travel and effect other limbs or any other part of your body I so choose to torment. I can, and likely I will.

I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That’s me. Crying for no reason? Angry for no reason? That’s probably me too. It is hard to not feel hopeless when you have me beating your body up constantly.

I can make you literally scream out loud, anytime of day or night, anywhere you are because I can create pain that makes you sure someone just stabbed you with a knife. Making you look crazy is fun for me.

I can make your hair fall out, your nails become dry and brittle, cause acne, cause dry skin, the sky’s the limit with me.

I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don’t discriminate.

Some of my other inflammatory disease friends often join me, giving you even more to deal with.

If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons: That sports injury, needle stick,, or that car accident, or maybe it was the surgery to correct a bone problem.. Whatever the cause, I’m here to stay.

I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can even try to help you effectively. Most of them will make you feel like you are to blame, or worse, it is all in your head. I’ll convince them that you are crazy because normal people know that you can’t have all those symptoms all over your body and still walk around looking normal.

You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.

There are so many other ways I can make you sick and miserable, the list is endless – If your body is all of a sudden dealing with things that were never issues before…yep…. that’s probably me.

Shortness of breath or “air hunger?” Yep, probably me.

Bone density problems?

Can’t regulate body temp and poor circulation?

Constant ‘electric jolts’? Yep, probably me.

I told you the list was endless.

You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.

You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist.

I will make you question your own sanity at times. I will make you contemplate unthinkable scenarios.

Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.

Even after explaining to those you interact with regularly that I’m the most painful disease known to man, and there is no cure, they will say things like “I hope you have a speedy recovery”. Those who don’t know me well have no idea how cruel and unusual my punishment can be.

Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.

They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.

Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my sister had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that sister is fine on the medication SHE’S taking, doesn’t mean it will work for you.

They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ can be effected.

The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.

Author Unknown 

RSD Angels Network 


I’m humbled and excited that this month,not only did I get a news article into the “Pain News Network ” (as you can see a couple of post ago!!).. But now how exciting to be spotlighted in the RSD ANGELS  

 Express newspaper for the Holidays!!!Im honored & humbled & wanted to share with you!  Thank you!!