CRPS: Find the Fruit or Rot Inside

CRPS: Find the Fruit or Rot Inside

By Gracie Bagosy-Young.

I was diagnosed with Complex Regional Pain Syndrome many years ago. Sometimes I forget how long it has been. Of course, no one explained what those 4 letters meant to me, they simply wrote them on a piece of paper and told me to google them. I left there irritated and confused. After some research, I landed on words like “incurable” and “lifelong” and those feelings soon turned to anger. That anger ate me up! It was rotting me from the inside out, and I was not going to recover in that state. It was not healthy at all.

Gracie Bagosy-Young

I have grown a lot since then. I have reached out and met hundreds of thousands of amazing souls struggling with these same 4 letters, along with other chronic pain issues. Chronic pain has a way of slowing you down and forcing you to think.

The biggest lesson that I have learned is to find the fruits of life-the beauty in everyday living that I was too busy to see before.

Patience: I had none! Who had time for that? I was not patient with myself or anyone else. I was constantly busy. My body simply does not allow that any longer. I don’t mind when someone cuts in front of me in traffic-maybe they are headed to the hospital. While I was obsessively early prior to this diagnosis, I am ok with arriving just in time if it takes me a little longer to get ready. I used to hate broken plans. Now I understand that is not always a sign of disrespect, many times people are facing battles that we cannot see.

Pride: I was proud to a fault. Having been raised by a single father, he taught me that vulnerability was a weakness and I should always be strong. It was EXTREMELY difficult, but I have learned that the only way to be authentic is to share your vulnerabilities. It is best to allow others to help you, because that is how they show you that they love you. It is also ok to ask for help when you need it!

Silence: I never had an appreciation of silence. Even if I were messing around the house, I always had the TV or music on in the background. I also had kids. Now I crave silence. My nerves are doing crazy things on the inside of my body and I cannot control them. I feel the need to appreciate the silence and stillness that I can control on the outside.

Love: Learn to love yourself. Stop hating your body, it is the only one you get! Take care of it, feed it well. My Pastor said, “Look around at your friends and you will see your future.” If you are surrounded by toxic people, MAKE THAT CHANGE! I did. Love yourself and the right people will find you.

Nature: OK, maybe this is just my age speaking here, but sunsets have never been so beautiful, flowers have never smelled so sweet, and the sound of the ocean has never been so alluring! I love getting lost in the woods. Nature is healing. Unplug. Relax. It’s worth it.

Find the fruits in life or allow yourself to rot inside with bitterness. The choice is yours.

Gracie Bagosy-Young www.GGPainAdvocacy.com www.GGPainFoundation.org Twitter @GracieBagosy FB @GGPainAdvocacy

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Sandy Auriene Sullivan

For Bill and others put in a similar situation – methadone clinics you need to attend daily; please contact https://www.samhsa.gov Substance Abuse and Mental Health Services Administration

While the term ‘substance abuse/mental illness’ administration sounds frightening, there are other services besides the methadone clinic. SAMHSA certified doctors, some are pain specialists like my doctor can prescribe methadone, suboxone, zubsolv and my doctor e-scripts my prescription [fax/phone] into the pharmacy as they are not SCH 2.

Suboxone and zubsolv have an opiate called buprenorphine. Which is used to treat chronic pain globally. While suboxone and zubsolv are buprenorphine/naloxone and insurance will only cover for ‘opiate dependency’ but there are more than just pain specialists that are certified to prescribe this medication. No one can get out daily for their medication! It will end in misery and is especially dangerous for those living alone.

I personally have found that suboxone manages my pain better than no medication or even methadone. Since I’ve never had a high from pain medications; naloxone in the medication preventing a ‘euphoria’ – isn’t relevant for me. Because of cost was recently switched to the generic version zubsolv; it doesn’t last as long as the suboxone film but works almost like an IR tablet that dissolves under your tongue.

It’s only been about 3 mos so far for me and I’ve had the shingles and with the influenza virus twice now – just spent the last week in a fever of 101.6. Almost went to hospital. If alone absolutely would have called 911.

[ **It’s in the wording. make sure the doc leaves it at – opiate depence *without* complications – and when asked why you take that medication by any other doctor – state your illness and your *RIGHT TO TRY* for pain management. Right to try, is broad and allows for patients to try many medicines ‘off label’ in my experience.

Jane

I agree! Sometimes we must walk through the valleys before we can get to the beauty of what life really should be about!

Bill Gillerstein

Gracie, I am so very happy for you. You are at peace with yourself. That is a very easy thing to say and an extremely difficult thing to attain. For those of us that have been fighting chronic pain for decades it is rare. I had found partial peace when my Dr was allowed to treat me with OPIADS. I didn’t abuse them, I didn’t get high from them but they allowed me to live a productive life. Since August 8th 2017 , the day I was forced into a methadone program my life has turned to hell. I have to pay $400 a month and go and receive and take my 40mgm of methadone every morning. I recently had the horrible flu that swept the nation. This horrible place that doesn’t take insurance and is the only methadone clinic within 200 miles, made me come everyday with the flu to get my dose. I am 64 yrs old and for 3 days had a temp of over 103. They said no exceptions, not there fault, the DEA sets the rules. The methadone covers my withdrawals 80% of the time. On Saturdays and all holidays the clinic is only open from 7-9am. That’s great for most people but I work until 200am, don’t get to sleep until 4am so u can see my predicament. I had open heart surgery a year ago. I have had 12 spinal fusions and 2 shoulder surgeries and a subdural hematoma on my brain. The pain is incredible and the joy of living has been stolen from me. So Gracie I am thankful you have been able to find peace. All I have is pain and anger. The cure for my ordeal is available and works but our government says I can’t have it. Pray for me Gracie!! Pray for the hundreds of thousands of people just like me. Pray that I have the strength not to just end it all. Some days that seems the only thing that will help.

Bob Schubring

Our American culture puts too high a value on hyperactivity and too low a value on calm and quiet. Our cultural attitudes toward drugs reflects this bias.

There’s real fear about the users of opioids for pain and benzodiazepines to aid relaxation. Making ourselves too relaxed might be habit-forming.

And no one at the FDA seems the least concerned, that I can walk into a truck stop, buy a half-ounce bottle of pure Ephedra root extract, swig it down, and go out on the road wired wide awake. The makers of the Ephedra extract do not even write a warning label on the bottle about narcolepsy. Yes, the Ephedra extract will wake me up behind the wheel, if I’m Ephedra-naive. But suppose I take the stuff every day…when my lack of sleep causes narcolepsy and despite staying on this alleged nutraceutical/OTC med, I doze off for 30 seconds and my truck rams a school bus while I’m sleeping…nobody seems to care that I was using stimulants that are unsafe for continuous use.

Our culture assumes that activity is good and rest is bad…or at least boring.

And the reality of the human body is that we need both rest and activity for our health. The body must cycle through rest periods, to restore itself from the activity. Pain is a warning that something is very wrong…learning how not to make ourselves hurt any worse than we already do, is the most important survival skill we can acquire.

Thanks, Gracie, for having the courage to speak out about that.

Hi dear friend!
Spot on. Chronic illness does teach us patience.
I agree, chronic illness or not, find the beauty in each day. Be grateful & write or make a note of, daily gratitudes.
Thank you for all you do!

Ibin

Very inspiring. I suppose the ability the “re-invent” ourselves is relative to how affected by lifetime pain management issues and the resources….available. I do not expect my wife to be able, no where near, to do what she could 10 years ago after diagnosed with lifeime pain management issues and very few ways, none of which dot/gov, our elected officials, representatives, and the experts has offered or even suggested for adequate lifetime pain issues with official policy. She tries, has good attitude toward managing constant un managed pain but, she was in fact, a different person about one year ago.

I, on the other hand, as the primary income provider, or was, am still perplexed at just exactly what to do, after 23 years of being enabled, not harming myself in any calculable way…….now.

Thanks Gracie

This is so true! Thank you for the well written reminder. I needed it today. Wishing all my fellow CPP’s a day filled with more beauty than pain.

Pam

it is so refreshing to read this, I can totally relate. It is so VERY refreshing and affirming to read this positive message about ‘life in general’. THANK YOU SO VERY MUCH GRACIE.

JoDawn

Beautiful! Thank you!!

Debra Gordon

Gracie: Wonderful article! It’s soo very true. Everything you said is truly how I feel. It boils down to the beauty of life and seeing it, for that beauty. Unfortunately sometimes we have to get sick to truly realize that. Maybe that’s a blessing in disguise.. I don’t know😊. Thanku for a wonderful article! Deb