With Gratitude From a Pain Ambassador

With Gratitude From a Pain Ambassador

By Suzanne Stewart

As I sat in my “Lazy Boy”chair with a pillow under my knees and a soft blanket over my body, I flipped through my smartphone. I was checking my email on a cold Winter’s night and suddenly I was filled with a feeling of friendship and a special kind of love and appreciation. I received an email stating that I was “nominated by a group of my peers, for the U.S. Pain Foundation’s 2016, Joselynn Badman, Pain Ambassador of the Year Award“! I was surprised, happy and filled with a feeling of being appreciated. No matter if I win or not, I thought; how nice was it to be nominated by my peers.

Suzanne Stewart

I don’t participate in competitions or contests where I have to ask people to vote for me. I had at one time done that, in the beginning; several years ago.  But it didn’t give me a good feeling inside. It felt like a popularity contest. It felt as though others might think that I was doing good things in order to get something.  This was a nomination that i had known nothing about and didn’t ask anyone for anything. It was awesome to be nominated.

I filled out the questionnaire that I received from the U.S. Pain Foundation and waited for the results to be announced in the New Year of 2017. Then one day in January, I opened up an email message from my dear friend, Ellen Lennox-Smith; in which she was congratulating me on “winning the Joselynn Badman Ambassador of the Year Award” for 2016.  I had no idea and I got so excited that I think I would have jumped up and down if I could have! My husband was sitting next to me and I told him about it. He was so happy and then we furiously looked to find out more information. I hadn’t read my earlier email yet and there inside of an email from earlier in the day, was the U.S. Pain Foundation’s Monthly Newsletter. I opened it up and the first item on it, was a photo of me holding my “special tribute” from the Governor and a House Rep. in Michigan. Then I saw the words, “2016 Ambassador of the Year:  Suzanne Stewart“.  I looked to my earlier emails for that day, and there was a beautiful note from Lori Monarca, the Executive Office Director of U.S.Pain Foundation.  It reads ” Congratulations to  you Suzanne on your nomination and honor for the Ambassador of the Year Award!!  What a great honor to have you win this as you have put so much time and hard efforts in such an amazing way throughout the community during the year!  Your determination and dedication is unbelievable and you are so worthy of this award. Thank you so very much for being a part of our U.S. Pain Family!” I proceeded to get beautiful and loving notes, one after another from these persons who I call my U.S. Pain “family”.

I later got emails from Lori and from Paul Gileno, the President of the U.S. Pain Foundation.  Paul congratulated me and told me that he was going to fly all the way from his home in CT. to my home in Michigan, to give me my Award in person!  I was so thrilled and couldn’t and cannot even believe the love and kindness shown to me by this pain family.  This is the U.S. Pain Foundation, my “family” that is made up of many other persons who also live with pain issues.  They strive to advocate and try to always help others. A family of pain patients helping other pain patients.

If you know anything about my life, you will know that things had never been easy growing up. Life just kept getting harder and more painful. Bad things kept happening to me, one after another.  I’ve never won anything and I never even thought about it.  Mostly because I’d always thought that “those kinds of things happen to other people”.  I’ve continued onward to be the best person that I can be. I try to think of others and treat people how I wish to be treated. I’ve made my fair share of mistakes and I’ve had days when I didn’t behave or speak in a manner that I would prefer. But I get up each day and keep trying to move forward in a positive manner; to the best of my ability.

As time went on, there were emails exchanged and plans were made for Paul to come to my home and present me with the Award. I was so excited and then nervous to make sure that I made a good impression, of course. But then again, I’m not sure why I was nervous? I had spent several days “hanging out” with Paul and everyone from U.S. Pain, last Summer at the Pain Summit!  We ate lobster together and even wore those little bibs. LOL!  The day arrived and it was Thursday, February 2, 2017.  I think that I changed my outfit about ten times that day.  I didn’t want to be too dressed up or not dressed up enough. I wanted to be dressed appropriately but what is appropriate, to wear for receiving an award?  We were going to go out for dinner and my family and friends were invited. It was all very exciting and I think I emailed Lori more than a few times within that 24 hour period, asking many questions. I even asked if I should wear my U.S. Pain Foundation, collared shirt, with their Logo on it. She was so kind and told me to just be comfortable.

Paul Gileno and Suzanne Stewart

I had nothing to fear, because once I opened up the door and saw Paul standing there; all of my nervousness disappeared. I only felt calm, happy, excited and appreciated. He is one of the most kind men I’ve met in my lifetime.  He came into our home and my husband and I chatted, laughed and joked with him for quite awhile. I felt very comfortable  and then he gave me the most beautiful crystal award. I’ve never seen anything so beautiful and with such wonderful, kind words engraved on it, too. It says, “U.S. Pain Foundation” (and their Logo)…then it says: “AMBASSADOR OF THE YEAR 2016–presented to SUZANNE STEWART, In Recognition for your Outstanding & Dedicated Services to the Pain Community”….I was in awe, my jaw dropped and my heart was beating quite fast. I feel so honored and humbled to receive such a beautiful award with words on it that are so meaningful.

I am quite humbled by this Award and by the entire experience.  I’ve never expected anything for what I do. I love people and helping persons with chronic pain illnesses, like myself. I simply do what I do because it honestly helps me to stay positive and gives me more of a “purpose”. Keeping other pain patients hopeful, positive and sharing information with them via my writing and support groups etc.; makes me feel happier. Like I always say “HOPE is a Verb. You must DO something in order to keep hopeful and positive”.  Helping  the U.S. Pain Foundation by holding Awareness events, being an Advocate and fundraising is another way that I get to help others living with Chronic Pain. It’s just in my blood because before I was disabled by chronic pain, I was an Interpreter for the Deaf. I worked with Deaf children doing speech, auditory training and taught American Sign Language. These days aside from being a chronic pain patient, ironically I have two hearing aids. I have hearing and vision issues since a car accident in 2002 left me with many health issues, several chronic pain illnesses and a Traumatic Brain Injury. But I’m always happiest when doing something for others.

A group of my peers anonymously nominated me for this award and the U.S. Pain Foundation gave it to me. To my peers,  I say “Thank you so much for the nomination. I have made some wonderful lifelong friendships by being an Ambassador for the U.S. Pain Foundation.  I’d like to reiterate that I feel humbled and so honored to have been nominated for and to receive this special award.  But U.S. Pain Foundation are the ones who deserve something wonderful for all that they do for persons living with daily chronic pain. They go “to bat” for all of us when they visit the state and federal legislators. They not only fight for our rights but they teach us how to fight for ourselves. There are:  conferences, webinars, Twitter chats, Social media days for sending out love and Information regarding rare diseases, Invisible illnesses and more!  They hold the annual Pain Summit to educate us more about ways to help ourselves. One of the main things U.S. Pain likes to teach us is to “take care of ourselves first”.  I really want to reiterate my gratitude for Paul coming all the way to our home in Michigan, to give my award in person and in front of my family and best friends. With that gratitude I also want to add the wonderful dinner and conversations that we shared. A chronic pain patient himself, Paul Gileno, flew several hundred miles to personally give me a beautiful, meaningful experience along with a lovely award. Again, I say “Thank You  very much from the bottom of my heart. I only hope that I can follow Joselynn Badman’s example of a true Pain Ambassador and Pain Warrior. I will continue to learn, advocate, share awareness and speak about HOPE for persons living with chronic pain”.

Featured image is  Suzanne Stewart with her husband, Craig (left) and U.S. Pain Foundation President, Paul Gileno (right).

Suzanne has lived with the long term effects of a TBI, Full body CRPS & several chronic pain illnesses since an auto accident in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at the University of MI hospitals & worked with Deaf children. Suzanne started out as a Chemo-angel in 2005; & a Mentor for RSDHOPE. She continues being a Mentor, fundraiser & Writer/blogger. Today shes also a patient health advocate for RSDSA and is Michigan state Pain Ambassador for the U.S.Pain Foundation. She’s founded & admins. support groups for various chronic pain illnesses. Suzanne holds awareness events, has made Awareness jewelry, creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog, “Tears Of Truth” (Suzydukettes.wordpress.com). 

Suzanne lives with her husband, Craig and kitty cat “Luna”. She is a mother of two married daughters and loves being a Grandmother of 3 granddaughters. (*Luna is a chemo angel kitty. She sends positive letters & small mailable gifts to children going through chemo-therapy. She has her own blog at: TheKittyCatDiaries.wordpress.com)

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Suzanne Stewart

There are 17 comments for this article
  1. Suzanne B. Stewart at 4:25 pm

    Hello, I decided to return & respond to a few more comments. I wanted to say “thank you so much for your kind words”, to a very dear friend & fellow group mentor, pain patient leader; Sheryl Donnell! To Angelica, I think sometimes we do get more than we should have to handle. But in saying that, we don’t have many choices other than to handle it. Slowly,keep going and continue onward In as positive of a way as possible. What I’ll say also is that I was a little girl that was considered by the Govt. To be “the worst case of childhood trauma/abuse they’d seen in the past 36 years!” So I grew up & made a choice to not be bitter or mean but to be as loving, kind & helpful to others with any kind of inner or outward pain,as kind as possible. But I had way more than a little girl should’ve had to handle. Some people get “lost” because they cannot handle one more thing ….so in my opinion, we do get more than we can handle sometimes. But we have no choice but to “handle it” & deal with whatever it is. Then we need to try to remember that good things can be right around the corner and never give up hope!
    Also what I try to remember and what I say when I do public speaking and ; regarding the statement made about :“there is always someone worse off than you”. What I try to keep in mind & what I say instead; to others like me, who live with chronic pain is a bit different. I say “we are all individuals and live with our own bests and worsts. My worst pain may be: Several high chronic pain illnesses, including: CRPS, Chiari, Autonomic Neuropathy, Gastroparesis & SIBO (& more). But someone else’s worst pain may be something like OA. If that’s their worst pain, it doesn’t diminish the fact that it’s the worst pain they’ve ever known. Everyone has their own worsts with pain. One persons pain doesn’t increase or diminish another’s . There will always be those who feel that they are worse off or better off than someone else. But only “I” know my pain and it cannot be compared to anyone else’s. Because I try to be a patient health advocate on my good days; and do things to support my chronic pain community; does not mean that my pain is any less.

  2. Angelica Heavner at 9:00 pm

    First thing Congratulations Suzanne. We all need to remember that the leaders of the pain groups and sites also battle pain.
    To the ones complaining about not getting help, keep looking for a doctor that will help. Dont give up and dont blame others in the same boat as you. They didn’t cause the problem the GOVERNMENT DID.

    Suzanne I believe in one thing and it has gotten me thru 3 rare special needs kids (one that wasn’t supposed to live past a yr old) than working night shift in several nursing homes, for me to get this disorder too. The sayings that get me thru are “He only gives you what you can handle”, and “there is always someone worse off than you”. It works for me and gets me thru one day to next. I do the same with pretty much everything.

  3. Ibin Aiken Talong at 4:47 pm

    May God Bless you in a mighty way Marco. I don’ care what anyone says, prayer works. You will have me and my families prayers. It seems like dealing with severe health conditions is difficult enough and it gains no empathy. Not even from caregivers who are trained and educated in dealing with patients who have chronic pain. You will find a good doctor to help you. I pray that the docto will have compassion for any and all humans realizing the hardship that health conditions and pain cause. Pain, chronic pain needs to be treated……sufficiently. Those with no empathy or compassion whether caregiver, family, or anyone not enlightened will have to answer for their indifference to another persons needs and problems. There is none to plead thy cause, that thou mayest be bound up, *thou hast no healing medicines. Jeremiah 30:13 KJV It seems as we are alone with our pain but we’re not.

  4. Suz Johnson at 3:56 pm

    Congratulations,Suzanne! I became a pain ambassador a few years ago and then my brain decided to ramp up my headaches and kick me about.I still get pamphlets which i take to all the different docs I see and try to reach out to other pain patients,but that’s about all I can handle these days, I was the first pain ambassador for Arkansas,I sure hope I’m not the only one because my butt is dragging. I read a lot of stuff from US Pain Foundation and it gives me hope that we do have a voice to help us reach out. I like how you call the word hope a verb. I think of it as helping other people every day. It keeps my focus on service to others and not on my constant pain.Thank you for all you do! You deserve to be recognized for the supreme effort you have towards others.
    To MARCO: Please don’t give up! I think we’ve all at some point thought of ending it all and that’s a completely normal feeling. No one in their right mind would choose to live as we do without getting the help we need from our doctors, not the alphabet agencies. Tie a knot in the end of your rope & hang on! There are some things to try from mother nature, just keep getting up and moving towards your goal.

  5. Sheryl M Donnell at 3:35 pm

    My dear friend, who better to receive an award like this but you? Your caring nature should be awarded!!! I am so proud of you I could burst!!! Way to go my friend!!

  6. Suzanne B. Stewart at 11:28 am

    To Star, I want to say that “I’m sorry you’re in that place”! My qualifications are the same as yours. I’m a chronic pain patient and I live with several high pain illnesses from A-Z! I take Opioids and I’m scared too! I try not to live in fear though because then I lose twice, when or if something happens! I lost my Dr and my meds in July 2015! I was on them for 12 years! Double what I take now! I had to gobthrough withdrawals, alone at home; but with my loving husband at my side. By “alone”, I meant without a Dr! I’d already suffered a heart attack in 2005 & a CVA/stroke in 2006! I was afraid of that happening again, too! I don’t recommend anyone doing that! But I made it through and my Blood pressure got sky high! I finally found help in another pain Dr. But there were and are “conditions”! But I’m on much less meds now. I cannot do as much as I could before! But I still run my support groups & I continue to write & be an advocate! As Jenni P. says in her article today, “I am that girl whose still wearing yesterday’s pjs, with old makeup on my cheeks and my hair a mess”… but I don’t stay in that place long! Just long enough to tell myself “it’s OK …& Ill try again tomorrow “! Yes, I do try to be happy. But that doesn’t mean that I’m not sad for whats happening to all of us! We just have to help keep eachother up and keep on fighting!
    To Cherri: thank you so much! Guess what?? I AM THE GIRL WHO WROTE THAT SRTICLE RE: SIBO!! I’m soooo happy that it’s helping people!! I have to take antibiotics sbout once per month for 10 days! I must take probiotics in between and they change the antibiotic every 3 times!! Good luck to you! I’m so happy you got help and that amy article helped you!!
    To Dr. Langley: thank you so much for your kind words!

  7. Star at 10:28 pm

    I don’t know her qualifications and job . But in all the congrats to her, there are so many Americans in chronic pain, due to government, FDA/DEA, why can ‘t I get treatment? I have a 30 plus year record of not abusing my pain meds, but here I sit with nothing! I hurt all the time,hate life and can’t wait to die! Are you happy now?

  8. Suzanne B. Stewart at 7:26 pm

    Hello Luvs, I wanted to say “thank you” so much to all who gave me “Congrats”! Thank you for your kind words. A touch of Kindness can turn around a “bad day”… To Marco, I will try to find you on Facebook! To Jean, I want to let you know there are many many Pain Ambassadors and we truly are taught to “take care of ourselves first”, as I stated in my article. When or if I were to commit to do something such as an Awareness event, fundraiser, social media task etc. and if I can’t do it at the last minute; The U.S. Pain Fdn. Would not be upset with me! If it was due to pain or illness they’d tell me not to think twice about it. No one in my U.S. Pain family/community would be angry with me. We all help each other out and we have each other’s backs. I have a few support groups online, I write for this News organization and I do other Awareness, support and fundraising activities. If I wake up one day or for a week or even a month, & cannot do anything because of pain and/or illness; they wouldn’t give up on me. Others all pitch in and we all do these activities and we all make sure that while trying to advocate for others, we do take care of ourselves first. Thank you all so much. Please feel free to look me up on LinkedIn or Facebook!! I welcome new friends; with or without pain. Sending Peace & Hope–Suzanne

  9. Cheri Furr at 6:19 pm

    Very well, and humbly written. I have read your articles before and also want to congratulate you on your award! Just writing articles about CRPS, showing that you can still stay active, and encouraging all of us to hope helps us all. The U.S. Pain Foundation deserves a lot of credit for all the work they do and the articles they bring us. I have CRPS also and have suffered very long periods of gastrointestinal distress when I cannot eat anything, not even gelatin or chicken broth. I have to survive on a low sugar sports drink and frequently have to go get IV fluids. I have been to six gastroenterologists, including both Duke and UNC doctors. No one had been able to diagnose me in 17 years. At one time I was even given an $18,000 octreoscan (radioactive) over two days because they were afraid I had a microscopic slow-growing tumor called a carcinoid. Then one day I read an article here from a woman who also had CRPS and had the same problem and was diagnosed with small intestinal bacterial overgrowth, or SIBO. I took the article to my latest doctor who said that made sense to him. When I hit my next episode, he prescribed a very powerful antibiotic, which worked! If I hadn’t read that article here, I might not have ever been properly diagnosed. It’s the sharing of information here that is so helpful to all of us. It’s not only community and legislative awareness on chronic pain diseases, it’s the medical community! Doctors still have a long way to go before they understand the chronic pain community and side effects that come along with these illnesses. Treatment, medication, counseling, stress management–they need education on all these things. Keep doing all your work, you and the U.S. Pain Foundation both! And I thank you.

  10. Michael G Langley, MD at 4:42 pm

    Looks like they made an excellent choice! !!CONGRATULATIONS!!

  11. Debra gordon at 12:07 pm

    Congratulations Suzanne! Great honor and well deserved! You’re very inspiring.. thankyou💗!!

  12. Wendy Paley at 11:21 am

    Congratulations Suzanne. What a wonderful and well deserved honor! It is so nice to be recognized even when unexpected and never asked for. Thank you for all you do for the chronic pain community!

  13. Heather at 10:56 am

    Congrats Suzanne!!! Awesome job. Thanks for all you do for our pain community. We are all true pain warriors and Real! I will never stop fighting or advocating and educating for those who suffer from pain. It is needed now more than ever with all of the changes. We have to make a stand, speak up, and show the US we do exist, we are not invisible❤ Stay Strong and keep up the great work 🎉💜💙
    Heather McCollim
    US Pain Ambassador

  14. Ben Aiken Long at 9:36 am

    It is always nice to be recognized for participating in a cause especially when participating for the good of many. Congratulations. I was a volunteer firefighter for 14 years. I have been resigned from the department for about 20 years now but, I realize that there are still millions of men and women serving their fellow man in the fire service, rescue squad, and first responders. I don’t wish to leave any person or organization unmentioned so I will congratulate all good people who have a real affection for their fellow man. I wlll never understand how any organization can attempt to arrive at a seemingly good goal for the welfare of all mankind by “punishing” innocent people. This is NOT the way to “save” people from harm and worse. The “guideline” by the CDC states that it is just a publication to opipoid medication prescribers in an attempt to help make all prescribers and patients realize the “down side” of opioid medication use. To us, the chronic pain inflicted, the downside is not ANY worse than what we have to endure daily. Sure, medication CAN and WILL be abused by a certain percentage of our population. What makes zero sense to me is the reduction in prescribing opioid medication to ALL chronic pain patients to achieve a goal of less mortality in relation to opioids in the body at the unfortunate time of demise. There has been no attempt to segregate the illicit opioid users and the lawfully prescribed opioid medication for those that have sought every other means of treating their individual condition causing chronic pain. Lumped into one group” we’ll decide how much medication you need” says the CDC because we have done a study. I The same effect can be achieved by lining up every person “suspect” of espionage during any war and shooting 20 people to get the one guilty “spy”. The goal is accomplished but, look at fhe innocent lives taken to achieve that goal. This is NOT the America I know and grew up in. I realize that drastic situations require drastic actions but again, we in America are presumed innocent until proven guilty. MILLIONS of opioid medication patients have been stable on their medication and though still in pain, they have been treated with the last or final known choice of approved medication to control pain for many decades. There is no other medication, legal medication in many states to turn to. The guideline must be amended. It is causing harm because of sleep deprivation which WILL affect your mental wellness and causes many other negative results that our finest disease affiliated agency just don’t seem to care about. It is going to take action, peaceful action, but action.No one that does not have severe chronic pain OR has a loved one with the same condition is concerned with we the chronic pain patients. I don’t believe that much support will come from the general public. Even though the odds are that if one lives long enough they will experience some type of chronic pain. Typical thinking for all humans.It is so ignorant to expect those who have been chronic pain patients for decades to simply reduce their medication when the patient is being prescribed just enough to keep from leaving this world in the first place. Can a legal action be taken? The CDC states that it is just a “guideline” but there are severe penalties for our physicians for non compliance to the “guideline”. I do not wish to disturb the peace in the chronic pain world but, evidently the authority knows my health condition and how to treat it better than our educated physicians who actually EXAMINE us and look for signs that the patient may be in danger from the medication. I was on the verge of being prescribed more medication when I was told that I had to reduce my medication use by 80%. No help from any other agency, just do it!.No consideration for my and our monthly obligations, just do it! No thought of the patients real need, just do it! No evaluation of the patients mental health if reduced in dosage of medication, just do it! Was the “guideline” evaluated by ANY other law makers? No, but a study was done by the proper authority, in the proper scope and manner. “One shoe fits all”. In other words if the patient is not battling a cancer, then, the patient only needs a certain amount of medication and that certain amount is enough for all of the chronic pain patients, nationwide.. Sorry to get off the subject. Again congratulations to you for a “thankless” dedication to the chronic pain ill. The same for all those that consider others well being before their own wellness!

  15. Marco A. Hunt at 8:25 am

    WAY TO GO SUZANNE!!!! CONGRATS FROM YOUR FELLOW CHRONIC PAIN & MICHIGANDER (THREE RIVERS – SW LOWER.). I LOVED YOUR LETTER HERE. MAY GOD CONTINUE TO BLESS AND KEEP YOU, YOUR LOVED ONES AND THE U.S. PAIN FAMILY ALWAYS AND FOREVERMORE!!! IF YOU ARE EVER IN THIS AREA, PLEASE FB ME (MARCO HUNT.) OKAY, I WOULD LOVE TO TALK TO A “NEW MICHIGAN CELEBRITY (IN YOUR OWN RIGHTS.) TO GIVE ME SOME WORDS OF ENCOURAGEMENT AFTER THE MOST RECENT HOSPITALIZATION (3 TO 4 WEEKS) WHERE I WAS ON LIFE – SUPPORT FOR A WEEK. THEN DISCHARGED TO MY SISTER’S HOME WITH MY MOM – i WAS TREATED REAL BAD MY MY SISTER. . . NEVER THOUGHT IN MILLION YEARS SHE WOULD DO ME IN SUCH WAYS. FOR EXAMPLE, THIS WAS MY THIRD TIME THAT I LOST USE OF MY LEFT SIDE (NOT FROM STROKE OR HEART ATTACK, JUST SOMETHING THAT HAPPENED.), I COULD NOT WALK YET, AND SHE LEFT ME ON THE FLOOR FOR ALMOST THREE HOURS – WHERE I HAD NO CHOICE BUT TO CRAWL IN PAIN TO THE ROOM THAT MY MOM WAS IN (MY SISTER BEDROOM) THAT WAS LIKE15 FEET TAKING ME ALMOST 25 MINUTES. MY SISTER TALKED TO ME HATEFULLY ARGUED WITH ME TO HOW I SHOULD FEEL WHEN IT WAS NOT HER IN PAIN, STOLE SOME OF MY MONEY, PAIN MEDICATION AND STOLE MOM’S PAIN MEDICATION (VERY LOW STRENGTH.) . . . 95% OF THEM. I HAVE FORGIVEN HER BUT I AM HAVING A BIT OF A HARD TIME IN TRYING NOT TO REMEMBER WHAT HAPPENED. I MEAN SHE SERIOUSLY BROKE MY HEART AND SOUL! MY SISTER IS 63 AND THE ONE WHO ACTUALLY TOOK CARE OF ME WHILE WE WERE AT MY SISTER’S HOUSE WAS MY BEST FRIEND AND AWESOMEST STRONG WOMAN AT THE YOUNG AGE OF 83. . . MY MOTHER, LADORIS. NOW THAT WE ARE HOME IN OUR OWN HOUSE, IT HAS BEEN REAL PEACEFUL PRAISE GOD!!! BUT I FIND MYSELF THINKING BACK TO THOSE AWFUL TIMES. I MEAN SHE WAS “CHAIN-SMOKING” AND MOM IS ASTHMATIC AND IT MAKE ME COUGH UP PLETHORA OF PHLEGM. IT’S IKE SHE WAS “DR. JEKYLL AND MR. HYDE. SEE WHAT I MEAN, I AM TRYING TO BREAK THIS BUT IT IS HARD WHEN SHE CALLED MY HEALTH PROVIDER’S OFFICE AND THREATENED MY DOCTOR AND CUSSED OUT THE OFFICE STAFF TWICE, AND I WAS TERMINATED FROM MY DOCTOR BECAUSE OF SOMETHING THAT I “DID NOT DO!!!!!” NOW I AM RUNNING AROUND LIKE “A CHICKEN WITH ITS HEAD CUT OFF”, TRYING TO FIND A NEW DOCTOR WHO WILL CONTINUE MY PAIN REGIMEN THAT I HAVE BEEN ON FOR THREE TO FOUR YEARS (EVEN THOUGH THE DOSAGE AND STRENGTH ISN’T AS EFFECTIVE AS IT USED TO BE, BUT SINCE THE DEA, P.R.O.P. and OTHER GROUPS INTERVENED WRONGFUL WITH CHRONIC PATIENTS CARE AND THREATENED DOCTORS, I LEARNED TO SHUT MY MOUTH WHEN I AM IN AN APPOINTMENT WITH MY DOCTOR AND NOT TO “ASK” FOR A CHANGE OR INCREASE IN QUANTITY OR STRENGTH.) WITHOUT BEING CUT OFF OR CUT-BACK OR GOING THROUGH THE STEP PROGRAM OR ALTERNATIVE REMEDIES THAT I HAVE ALREADY TRIED THAT DIDN’T DO ANY GOOD FOR MY PAIN. I HAVE; RHEUMATOID ARTHRITIS, FRACTURED SPINE, SPINAL STENOSIS, SPONDYLOSIS, ONE HERNIATED DISC, ONE BULGING DISC, COMPRESSED NERVE ON MY SCIATICA, AND SPINAL DEGENERATION – ALL OF THIS IN MY LOWER BACK. NOW AS FOR MY “MEDICAL CONDITIONS”; – I HAVE SLE, CHF, ANTIPHOSPHOLIPID SYNDROME, COSTOCHONDRITIS, AAA REPAIR OF MY HEART, HIGH BLOOD PRESSURE, KIDNEY INSUFFICIENCY, BORDERLINE ANEMIA, NEUROAPATHY OF BOTH FEET, OPEN WOUND (FOR THREE YEARS.) OF BED SORE ULCER 4TH STAGE (WHICH UP TO THREE MONTHS AGO RE-OPENED FROM STAGE 1.), ANOTHER OPEN WOUND OF THREE YEARS OF MY LOWER RIGHT CALF – FROM BEING INDUCED TO MRSA (THE NASTIEST TYPE – NF.) AT HENRY FORD HOSPITAL, AND I HAVE BEEN HEARING IMPAIRED [WEARING HEARING AID(S)]FOR 45 YEARS (NOW I HAVE SEVERE TO PROFOUND HEARING LOSS.). I THINK THERE’S 1 OR 2 MORE THAT I CAN’T THINK OF RIGHT NOW. BUT I HAD ACTUALLY DIED ONCE, CAME CLOSE 2 OR 3 TIMES TO DYING. AND ALL OF THIS “WAS NOT MY FAULT!!!” I HAVE CONTEMPLATED SUICIDE AND A FEW OCCASIONS. I HAVE LOST FRIENDS, MY SOCIAL LIFE, MY ABILITIES TO GET “GAINFUL” EMPLOYMENT ON TOP OF MY LOW MONTHLY DISABILITY CHECKS. I HAVE TWO DEGREES; ASSOCIATE OF ARTS & SCIENCE AND BACHELOR OF BIOLOGICAL SCIENCES WITH MINOR IN CHEMISTRY WITH EMPHASIS IN BIOCHEMISTRY (AND BIOCHEMISTRY LAB RESEARCH.), PHYSICAL CHEMISTRY, ANALYTICAL CHEMISTRY, ORGANIC/INORGANIC CHEMISTRY, AND MEDICAL CHEMISTRY. I’M IN DEBT, THE HOUSE IS IN BANKRUPTCY. BUT I “NEVER BLAMED GOD ONE TIME! WHAT IS AN INDIVIDUAL TO DO IN MY SHOES??? FORGIVE ME FOR GOING OFF SUBJECT SUZANNE AND MY FELLOW CHRONIC PAIN PATIENTS AND READERS. BUT I FELT SOMEONE WOULD LISTEN TO ME HERE. NOT THAT I AM EXPECTING ANYTHING IN RETURN, BUT HAD TO GET THIS OFF MY CHEST. . . BECAUSE I DON’T WANT TO BECOME SUICIDAL AGAIN. I JUST WANT TO BE HAPPILY GAINFUL EMPLOYED WHETHER IT’S WITH AN EMPLOYER OR SELF-EMPLOYED, HAVE SOME QUALITY OF LIFE AND BE IN POSITION TO HELP OTHERS IN NEED – BUT I TRYING TO HELP MYSELF FIRST IN ORDER TO DO SO. SO IN ENDING THIS COMMENT, I WANT TO THANK YOU SUZANNE FOR SETTING AN EXAMPLE AND THANKING YOU ALL IN ADVANCE FOR YOUR COMPASSION, TIME AND UNDERSTANDING OF ME. MAT GOD CONTINUE TO BLESS AND KEEP YOU ALL, YOUR LOVED ONES AND FRIENDS ALWAYS AND FOREVERMORE! WITH HUMILITY AND SINCERITY, ~ MARCO “POLO” – SW LOWER MICHIGAN.

  16. Jean Price at 5:06 am

    The advice noted here….to take care of yourself FIRST…is truly invaluable for those with pain AND for their caregivers! It can’t be emphasized enough! In nursing , I saw so many caregivers burn out and not be able to accomplish their own goal of caring for their loved one at home. They were exhausted and drained…and their determination couldn’t override this! The same goes for those working to tell the story of pain care and it’s many shortcomings now! Many people start out doing lots of good work, yet neglecting themselves, even overdoing beyond their personal physical and emotuial limits! We know living with chronic pain does not allow this for long. Worsening pain and added medical issues crop up, which can easily force them to cut severely back or leave the fight altogether. This then can add in guilt and a sense of failure on top of pain, making it ever harder to recuperate mentally, emotionally, AND physically!

    One of the things it’s hard to realize…and remember…is when you take care of yourself first, then you ARE truly taking care of others, especially those who love you. You’ll be able to accomplish more…with more quality, and you’ll last longer! In this fight against the powers that have so devastated pain care…and those in pain and their families…it means “you’ll live to fight another day!” It’s always difficult to pace ourselves, even more so with pain! We feel a little better and we then may overdo, only to come crashing down from any number of things, including just the overextending! So we have to then recuperate, and when we feel better, we may likely start to repeat this process.

    I think life with pain lends itself to this kind of “manic-depressive-type” life….better days make us want to really do more, bad days make us want to stay in bed with the covers pulled up! It’s not that this is “wrong or unhealthy” necessarily…it’s just the nature of the beast, of pain!! And it’s something to be aware of and work to at least lessen if not avoid altogether, especially when we get involved in helping others or advocating for ourselves and on behalf of all who live with pain and are being denied appropriate care!!

    Whenever I think of how important it is to take care of ourselves first, the advice given long ago to “love your neighbor as yourself” always comes to mind! This is another thing many people seem to overlook…that last part of loving yourself…FIRST! And it’s tied in to taking care of yourself! If you love yourself and value yourself…you’ll likely take care of yourself, or at least find it easier. Yet so many people with pain, and many people in general, have a difficult time focusing on themselves first and loving themselves, too. We may feel like we are somehow less…because we can’t function and DO as much, or our outward appearances show the stresses and strains of pain and we feel aged. We may not like that we can’t work and equate income with self worth…so we have trouble feeling our worth and we’re unhappy with ourselves! We may not like our shape or hair or face or any number of things about us, which all sadly blocks us from fully loving ourselves!

    It’s important to CARE enough about ourselves to be able to love ourselves, flaws and all! Pain and all! In fact, just like NOT taking care of ourselves can mean we can’t take care of others either…when we don’t love ourselves, we can’t truly love others either! Its much more difficult to overlook their flaws, and our love then is more shallow in general! We can consciously or subconsciously start the game of comparing others, feeling like they fall short because they don’t have to deal with pain and yet still can’t do the things we wish we could do! We can start looking at others in pain also as a competition, judging others we don’t feel are in as much pain as we are! Both of these trends can only end up making us feel worse!

    Taking care of yourself and loving yourself are definitely NOT personal pointers emphasized by society!! Instead, we are taught almost the OPPOSITE…a more “self sacrificial” stance of life! Do for OTHERS, don’t be needy (meaning don’t ask for support or anything else of OTHERS!), don’t toot your own horn (meaning praise others, yet not yourself!), be kind to OTHERS, share your toys (meaning give TO OTHERS what you yourself also want!), be generous with OTHERS (even if it’s at your own expense!), it’s better to give TO OTHERS than to receive, don’t ask for handouts (meaning don’t ask to have your needs met!), and do more than you are asked to do (meaning do more THAN OTHERS may do!). There’s likely more lessons we could add to this, yet the message is clear…we are taught to put others first in life! TO NOT BE SELF-ISH, SELF CENTERED, Its not that this isn’t a really kind and generous way to behave, it is! Yet there is a real need here for moderation in all of it….giving some of what you have or can do to yourself!! Plus no one is actually very happy deep down if they do this 100% of the time! Oddly, we can start feeling put out, taken advantage of, overworked, exhausted, abused, tapped out, and even unloved and uncared for!!!

    In fact, one thing here that really isn’t helpful…or true….is the stance on giving to others….it is also good to RECEIVE! When we accept help or offers from others, like their support and care…we are actually gifting THEM!! Helping them feel special and needed, giving and generous!! Refusing help, discounting the blessings others want to give US when they offer assistance is really not fair to them…or ourselves!! We all know what it feels like to be turned down, it doesn’t feel good or help us feel very useful. In fact, it’s a type of rejection!

    So accepting offers and reaching out for help can be a way to help and bless someone else AND ourselves! When we live with pain, it’s good to spread our requests for help around too! Then we don’t feel as if we have overly burdened one person! People are more willing to do for us than we sometimes realize, even strangers, like from a local church or organization with volunteers to help others! All in all, taking care of ourselves first and loving ourselves has many rewards…for us and others. And we end up being able to share more of ourselves when we do, often at times our world has narrowed down to our homes or even our beds! It can brighten our days and enlarge our world!

  17. connie at 4:08 am

    Congratulations Suzanne! Thank you so much for all that you do for the chronic pain community as well as everything for the community at large!