Walking Through The Day With A Pain Warrior

Walking Through The Day With A Pain Warrior

By Suzanne Stewart.

This is not just a story about me, but a story that many pain warriors live through on a daily basis. I know because I talk to many of them often.  Much of this is “our story”. …..I awaken each day; the first thing that I do is cry inside of my head. My body lay still too long.  Four hours is too long! I feel pain and don’t want to get up, or move because I know it will hurt. I’m so tired of the pain. I lay there and contemplate rising to my feet.  I hear my husband call my name.  He always says “Hello my Love, Good Morning! Time to rise and shine!”  He tells our Kitty, Luna, to come and get me. She always listens to him and she enters our bedroom and meows for me to get on my feet. Still lying there, I think about the day ahead and wonder if it will be a busy day?  Will it be one in which I have to do a few things? Or will it be a day that I can be a bit quiet?

Suzanne Stewart

After 40 minutes has passed from the time I took my medication, I attempt to get up.  First I sit up and I feel the pain in my back. The Degenerative disc disease, Scoliosis, Spondylitis and multiple herniated and bulging discs, make it almost an impossible feat. The medication does help. It takes the pain down from a 9 to about a 5; and I finally get up.  But then there’s the stairs to tackle. I hold onto the rail and then I lean on the wall. I fumble my way down the stairs, as my cat scampers past me, ready for her cuddles on my way to the kitchen. First, I sit on the ottoman and pet her for a few moments and then it’s time for breakfast. My husband has already made the tea and has my toast ready to go.

He goes to work and I go to my chair, my recliner. In my spot, there is a pillow and a blanket and a settle in for a look on the computer.  What fantastic things have happened overnight on Facebook, Twitter and Instagram? I answer a few questions, maybe I help a few people in my support groups? People always volunteer to help me with my groups because they are becoming large for one person to handle on a daily basis. People mean well, but they are also in pain and have much going on in their lives.  Eventually they stop helping and I’m alone again.  I don’t want to give up, because some people just need someone to listen, anyone.  I like being that person. I want to help and do something of value with my life.

Maybe after awhile at the computer, I will either write a blog post, an article; or maybe I’ll sign a song that day.  I love the beauty of ASL and the way the emotions come out of my body, hands and face. I can feel something other than pain. Until I’m finished; and then the pain is worse.  I have to rest and take more medications. My husband comes home for lunch because he says that he likes to check in on me.  We’ve been married for 20 years and he always comes home for lunch. I am one lucky lady to have such a knight in shining armor at my side. He never complains about doing so much. He cleans, cooks and does the laundry; after mowing the lawn and fixing whatever needs repaired in the house. Still, he never complains.

In the afternoon, I may visit my granddaughters and my daughter who live only a few blocks away. I’m still able to drive for “personal errands” and for about 10 minutes at a time. If I visit them, I get lots of hugs and kisses and more love and life than you can even imagine. They are rays of sunshine in a world of pain.  They don’t understand that I am in pain and that’s a good thing for now.  I like to light up their faces and give them love and receive that same love in return. My daughter and I may do a couple of errands or have a coffee and chat. It seems like a nice day, right? It’s true, it’s the nicest day you could imagine. Then I come home and I sink into my recliner and sometimes my cat will come and sit with me.  Her love is unconditional and she seems to know when I’m in more pain than usual. She gives me comfort and love, unconditional love.  By that time it is 3:30 in the afternoon.  It’s been a full day and my pain has risen from the activities.  I can’t do anything else.  I don’t have the energy to make dinner anymore. The fatigue is deep and lasts for long periods of time.  I rest and sometimes I nod off in my chair. The cat jumps off of the chair and the back door opens.  My hero is home! The love of my life and my forever soul-mate comes home from another day at his job as a teacher. We muster up something to eat for dinner. Mostly, for him; because eating has become something difficult now. It’s not fun or anything I look forward to anymore. I have IBS, S.I.B.O., and Gastroparesis. There’s so much I’m incapable of eating now.  If I just throw caution to the wind, and eat to be social or “fun”; I suffer more.  There’s the nausea, constant nausea and burning whether it is high or low in my stomach; it’s awful either way.  Then if I eat just a tiny bit too much, I will be sick for hours afterwards. This is something that others don’t see or understand.  My husband sees and watches it from the other side. Then there are the others who I “talk to” on the other side of this computer. Many of them truly do understand.

Then, my friends; it is evening time. The sun goes down and we watch some Television together and maybe read or “play” on the internet for awhile.  All too soon, it is 10:30 pm and my husband goes up to bed. He. has to work in the morning.  He kisses me goodnight and tells me not to stay up too long.  I tell him that I will come to bed as soon as I feel like I’m able to sleep.  Time goes by and it’s one in the morning, then 2:00 AM and 3:00 AM.   I start to nod off as I’m messaging the other “night owls” who are my fellow pain warriors. They are with me at night, because they too cannot sleep either.  We try to give each other support and the strength to persevere.  Finally, the sparks of chatter start to diminish online.  I too, feel like I truly want sleep to come and save me from my body and the pain that is within. Much of the pain is physical, but there is no lack of mental anguish. 

I come from a family that doesn’t know or care that I exist. There’s a long history that I don’t wish to write about here.  But I didn’t know how to feel love until I met my soul-mate, Craig. We’ve been married 20+ years now. I thank God for him every day because nobody has ever truly loved me until I met him. Some people ask me why I always go back to my family for more abuse and more pain? I guess because there’s a feeling of  “aloneness”.  We don’t have any extended family.  We haven’t had that kind of  family help or caring.  There is physical pain and there are other kinds of pain. Some of these exacerbate the others. We just have to surround ourselves with those who want us in their lives.  Those who want to give and receive; or share love with us. 

When my head finally hits the pillow at night, I lie down and listen to my husband’s breathing. So glad to hear those sounds of life and know that this person beside me has truly shown me what real love is all about.  I never knew if I would have that, some people never get to know it.  People who are “damaged” like me, have a hard time very often knowing the difference between real love and hurtful kinds of “twisted” love.  I’m fortunate to know this man and lucky to have his love and to have him to love. I try to let the sleep come to me. Relax, sigh and listen to the breath sounds and the sound of the cat purring next to me. This is my real “medicine” in life.  These sounds, this love and the love of my children and grandchildren are what makes me happy. I try to remember these thoughts as I fitfully sleep for a few hours, only to wake up to the “fear” of getting up on my feet once more again tomorrow.

Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor.  She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S.Pain Foundation. 

For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth (Suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 27 comments for this article
  1. Dian at 12:22 pm

    Have EDS, fibro,osteo, an a few other problems…cried when this one read Suzanne’s account,have family that live 15 mins away, no see or even hear from them..for yrs, your day sounds like this one’s, night time is so hard…yon pain physical an emotional is unrelentin…love all…so weary.

  2. Wanita 1 at 11:27 am

    M,

    One would sue the doctor for discrimination and neglect. To leave someone in pain is to subject them to cruel, inhumane and degrading treatment. That was said by a special representative to the United Nations. The CDC recommendations are being used by doctors as an excuse yet the guidelines clearly state that the recommendations are not mandatory and each case needs to be decided upon taking the needs of the patient into consideration. If a doctor has the appropriate documentation, uses a multidisciplinary approach to pain management, asess’s and prescribes a reasonable amount they will not be charged with anything. It is time to stop this nonsense. Google Declaration Of Montreal for info.

  3. m at 10:22 am

    Ah, deep pockets? The only way I could get on board was if it would FIX the problem.

    The doctors are refusing to write oxy (pain) prescriptions because of this being spread.. So how could that be actionable? Would you sue the doctor? Or the NIH? or who?

  4. Wanita 1 at 9:14 am

    HI Cynthia,

    I believe that people will need to file separately as there really is no particular organization to sue.

    Specific Pharmacies could likely be sued if they repeatedly fail to stock adequate quantities or refuse to fill a pain patient’s prescription. A pharmacist would never refuse to fill an insulin prescription or anything else so they should not refuse to fill a narcotic prescription. A person also might be able to sue their doctor if the doctor refuses to prescribe opiates if a patient’s pain is not adequately controlled via other measures.

  5. Cynthia at 1:31 pm

    So, why can’t one of the activist pain websites file a class action suit for us under the Americans With Disabilities Act? I mean , this has been going on for years now. This does not seem like such a hard thing to do. Someone with the knowledge of how to do this needs to step up. If I had the knowledge I would do it. I don’t think it costs money to do this. Or maybe a small filing fee? Usually, govt. paperwork filing is not expensive. And then if we need a lawyer or two, we can all contribute to that. This is just not productive enough, the way we keep talking about how bad things are getting, there has to be a way to stop this injustice. But it’s not going to happen if we all just talk to each other. We are preaching to the choir. Which is good therapy, but won’t stop these bastards from their cruel crusade.

  6. Rita Kimbel at 12:59 pm

    Hi Suzanne,
    I just got a call from my mail order pharmacy, my prior authorization ran out and I should call my insurance company and my pain doctor so I can get my delivery on the 7th, today is the 31st. I had to laugh and then cry. I laugh because I knew it was coming, like many others my pain medicine was ripped away Jan of this year. My 14 year old cervical spine injury left me with untreatable neurogenic pain. I have the stimulator implant and the oxy is the only thing that worked. So, get to the crying part, I didn’t ask for this injury, it was caused by a doctor doing a chiropractic manipulation. I never got compensation, in PA. You can’t sue a doctor. So every morning I would take my pills and 20 minutes later be able to function,be a Mom, a wife, a house keeper, now I wait 2 hours for a bit of relief from a form of oxy that is capsules. It’s a very low dose, works for about 3 hours, insurance company recommendation. But now they don’t want to even give me this. So crying again in private, in pain. Is anything changing, will I ever be pain free again? It’s inhumane. Have you heard of anyone getting any results? Anyone getting back their needed dosage? I have a very reputable pain spine doctor and we are disclosing step therapy I have been through already. Will it make a difference? Is anyone fighting in courts of law to get the medicine they need? What calls can we make and to who do we call? I know you are a voice for many of us that have the same magnitude of pain, what can we do as a whole, together in numbers?

  7. MC at 9:35 am

    Wanita 1, VERY WELL said. You should volunteer here.

    This (information) is NOT WHAT is getting spread around.

    Thanks

  8. Wanita 1 at 5:54 am

    I am glad if anything helps a person to feel relief of their pain. What works for one does not work for another. When a person experiences insomnia, constipation, nausea etc and is taking a narcotic it is assumed that the medication is causing the side effects yet inadequately controlled pain can just as well be the cause. Many medications around today were inspired by the medicinal properties of plants including morphine. Remember Opium is derived from a botanical and should not be viewed as “evil”. I find it counter productive to cause anxiety for patients whose pain is well controlled via an opiate by stating that they may eventually be outlawed for treating chronic pain. I would prefer seeing people band together to fight stringent restrictions. It is important that if any of you have been denied an opiate to treat your pain after having tried other measures then you must put in a complaint with The Department Of Justice as you are being discriminated against. You are protected persons under the American With Disabilities Act and it is against the law to discriminate based in disability. You have just as much right to adequate treatment whether you have Chronic Pain, Cancer or Diabetes. The United States of America is just one of many countries who signed a United Nations Treaty committing to the use of narcotics to treat pain. The World Health Organization has accurate data based on 50 years of research which shows that addiction rate for those taking an opiate for pain is less than 1% They also have research that confirmed that opiates is a safe and effective way to treat all pain.

  9. Suzanne Stewart at 7:16 pm

    Just in case anyone needs this number I wanted to post it here and it is also in My support groups….. here is the national suicide hotline number and please call if you feel that you are in trouble at all, if you may hurt yourself or anyone, if you feel totally hopeless…plz don’t hesitate to call. You may get a recording first and then a person will come to your aid and speak with you on the phone: it’s 1-800-273-8255 you’ll be calling a crisis center lifeline network closest to your area !

  10. Vicky at 10:58 pm

    Suzanne…as always beautifully written and poignant. Thank you for sharing

  11. Renee Mace at 2:07 pm

    Dear Suzanne: Even though we have different diseases we still have almost the same life. I too, have an incredible husband of almost 38 years, without him and my grown sons and their familes and of course Our Heavenly Father God, I would not be alive today. Almost every day hen I open my eyes I am sad that I didn’t die in my sleep. I have been so depressed lately with my ever increasing pain levels. I was in a 60 mile per hour head on car crash back in 2001 and that’s when my life that I once loved ended. I used to be a people’s person, always there to help others, I would ride my horses, play with all my animals, I had a lot too. I would take my son’s and all there friends who’s parents worked, out to go fishing, to a ball game, to the movies and etc.. I was the home in our area that everybody would come over to hang out at. You see I was a victum of severe child abuse, about anything you can think of, it happened to me. So when I grew up I wanted to be the best person, wife and mother, life as an adult was so awesome until 2001. Thanks when my life ended, I have Central Pain Syndrome in both my legs, it is a horrible disease, here is a short version of what it is: Central Pain Syndrome (CPS) is a neurological disorder consisting of agonizing pain signals of many differing types at once:
    • Burning
    • Freezing
    • Shocking
    • Aching
    • Crushing
    • Spasticity
    It has been characterized as the worst pain known to man.
    It is caused by damage to or injury of the Central Nervous System (CNS), which includes the brain, brainstem and spinal cord; its causes include but are not limited to:
    • Stroke
    • MS
    • Epilepsy
    • Head & spinal cord injuries
    • Aneurysms
    • Tumors
    • Infections
    It is aggressive, never ending and disabling, making normal life immensely painful and incredibly difficult.
    The medications and treatments used to fight it are very limited and highly ineffective. There is presently no cure.
    I had a wonderful doctor who cared about me when I would come in crying about the pain I was suffering, he sent me to every doctor to try to find something to ease my chronic pain and maybe cure it. I tried everything out there and I mean everything but the only thing that helps me is oxycontin/oxycodone. In today’s age with the CDC guidelines, the little life I had two years ago is GONE! I was reduced and then reduced more because in my State of Washington it is a law not a guideline that anyone on my types of pain medication shouldn’t be on more than 80mgs a day. I was on 345mgs a day and at that level I hurt every minute of the day, but I still could do some things. Today I can not do anything other then use my laptop when my medications work for about 45 minutes with my pain at about a 5 on the pain scale, but after 45 minutes it jumps to a very strong 8 or 9 and stays at that for 4 hours until my next dose of pain medications. I am so, so done with this madness, I try for my husband to This is a closed group for sufferers of Central Pain Syndrome and those interested in the disease. Central Pain Syndrome (CPS) is a neurological disorder consisting of agonizing pain signals of many differing types at once:
    • Burning
    • Freezing
    • Shocking
    • Aching
    • Crushing
    • Spasticity
    It has been characterized as the worst pain known to man.
    It is caused by damage to or injury of the Central Nervous System (CNS), which includes the brain, brainstem and spinal cord; its causes include but are not limited to:
    • Stroke
    • MS
    • Epilepsy
    • Head & spinal cord injuries
    • Aneurysms
    • Tumors
    • Infections
    It is aggressive, never ending and disabling, making normal life immensely painful and incredibly difficult.
    The medications and treatments used to fight it are very limited and highly ineffective. There is presently no cure. a fake happy face but inside I wish I was dead!!!!!!!! I can not believe that they (WA STATE) fired my awesome doctor for giving out to much medication to a few of us that nothing else helped. So now I see a nurse practioner who works for the State, who can only give out what my state says is enough, it doesn’t matter that I have ground all my teeth to my gums and today suffer from infected gums and parts of teeth that need to be pulled out but I hurt to much to go see a dentist. I also fell and broke my foot a couple weeks ago and like the dentist, I can go see a doctor because I hurt so very badly, I have no energy to fight anymore, the State has beaten me down so low that the thought of my death is all I think about. If you knew me, you would know that I have been a very upbeat person, even with all the abuse I suffered from with no family that loves or cares for me except my wonderful husband and sons and their families. So dear Suzanne, I can relate to you and I wish I could help you out and everyone else suffering, for me, it’s all over, I cried and begged my nurse practioner last Tuesday to raise my medications but she said she has to lower them even lower………… I am sooooo……… I hate to even say it because I have people who love me and they would be devasted but I can’t go on much longer, I am so sorry about my spelling but it hurts to much to look up words in my dictionary. Well my pain is shooting up so……….?

  12. Linette Woron at 9:38 am

    Dear Suzanne, how lucky you are to have a caring family. Hold them close. Like you I have no contact with.my birth relatives we have no real connection for many years. I don’t have help and it’s so hard to get up and have to go to work in pain with a failed TKR, 2 prior lumbar surgeries, fibromyalgia, etc. Constant pain. Thank you for hearing me.

  13. Patti at 5:54 am

    Thank you and bless you, Suzanne for sharing your story. It was so well written. How well I could relate on so many levels. I have central pain syndrome, CPS, identical to CPRS, though acquired differently (mine was from a brain injury). Sleep is my only escape and I dread getting out of bed in the morning, awakening the pain to continue its vicious cycle every waking moment. Like yourself, my husband is my best friend and I couldn’t get through this if it wasn’t for him. As if chronic pain isn’t enough, I too have the awful SIBO. Thanks again and keep writing.

  14. Cheryl m at 7:50 pm

    I’m jealous! Wish that my husband was as caring as yours. Maybe after 15 years of being of having a wife with pain, he is over it. Had a procedure this week and coming off one of my meds, never even asked me how I felt or how things went. So I get my love and caring from my dog. Thank god for aminals!

  15. Katie Olmstead at 5:11 pm

    I feel compelled to apologize, maybe this is appropriate and maybe it isn’t, for our fellow pain sufferers who give advice. I know it comes from a truly caring place but in my experience, and that of many others, it makes me feel like they think I haven’t tried hard enough to get out of pain. “If only you….” I am sure, Suzanne, that you have tried just about everything. I find that I feel belittled when people tell me they have the magic cure, and “if you wanted to get out of pain, you should try this.” Like I don’t want to get out of pain? Like I haven’t spend thousands of dollars on conventional and unconventional healing modalities over the last 19 years.
    While it doesn’t cure anything, I sure am a big fan of a warm purring cat (or two) lying with or on me.

  16. Loretta Holscher at 12:40 pm

    Thanks for helping my day feel “normal”.

  17. cindy deim at 10:45 am

    I read your articles all the time. You’re such a good writer, you are able to put into words what many of us feel. Thank you for all you do. I just want to say that many of us have tried different things to feel better. Some people find something that works for them but many of us don’t. Of course, we keep trying, we get up every day, even when we really don’t want to. When people ask if you want to lay in a chair or bed all day. Well of course not. No one in their right mind does. We all do the best we can with what we have. You have a lot. I can tell you are thankful for it. 🙂

  18. Jean Price at 10:42 am

    Around the time of my wedding anniversary last year, I suddenly realized…I’ve been married….and in pain….more years than I’ve been married…without pain! For some reason this really hit me hard! Later that day, I asked my husband if he would really chose to ask me for that very first date, some fifty years ago….knowing then what life with me would be like!? And I gave him total permission to answer this ANY way he really FELT was the truth…we’ve usually been honest with each other, even if it was difficult or painful. He thought a few minutes, and then, with a very very matter of fact tone, he said…”Yes…because it COULD have been worse!”

    Of course we both had a good laugh about this…yet later i was struck by how much overall truth was held in his seemingly humorous answer! Even with pain and my decreasing ability to function…I still had much to offer him, and others, just by being me! He recognized this probably more than I did, since we have a long history of being together since high school. So he has been around for ALL of it—all the pain and frustration, the scariness when doctors once told him I might not live through the night. Through all my losses and OUR losses Yet also through all my personal growth…and his own! Plus the laughs, the tears… and all the many joys of our two daughters and their families. So yes, it really could have been worse—and we’re both feeling so very blessed.

    Some of these blessings we really had to work at, and it wasn’t easy. Some of it we felt have just been given to us through no effort of our own. Yet even with our “granted blessings” we still had to work to realize and appreciate some of them, so they would count! Just like any kind of enjoyable recreation or vacation, being happy and fulfilled in life involves hard work, too! Although pain SEEMS to RULE our lives…it’s really the joys, both large and small, we can find in life—and our relationships— which really rule each day! Regardless of whether those relationships are with friends OR family…or even with special Facebook and internet acquaintances! Plus, learning to know and love ourselves, exploring our own spirituality, taking time to enjoy the beauty in nature, giving what we can when we can….and ALSO accepting the gift of help from others…all can add to the abundance we each want out of life. We can live more fully with pain…and despite our daily pain…maybe even make it through our worse days a little easier, too!

  19. Rick at 9:50 am

    We are grateful for your sharing. Sound like u deserve an angel to share your daily challenges. Your spirit is infectious:)

    Do consider probiotics and or Rick Simpson Oil (mmj concentrated. I have horrific ibs stuff as well and they help;)

    The rso has helped other major health markers. If u don’t like the stoned affect, different strains avail. Problem is it’s very costly. I can only afford a 3 day/wk treatment.

  20. Joan at 9:43 am

    I know your probably tired of hearing, but when I read this my throats is swelling, and I’m fighting the tears. I am so sorry you go through and endure this god awful chronic pain. I experience somewhat the same. Even though I am usually all alone, I have my cat Boots she’s a great comforting friend. I just really want to say is prayers lifted for you, and god bless for being a ear for others. Gentle hugs 🤗

  21. Ibin Aiken at 9:38 am

    This story from Suzanne is very much indicative of “quality” time lost forever. It is truly a narrative of how we, the chronic pain community have to endure our lives. I have had 2 back surgeries myself. I have been blessed enough to own and operate my own business for over 35 years. I have no other skill to “fall back” on, other than the hard work in the construction world. 23 years of adequate medication, self motivation, and love of my families welfare have all been factors in the ability for me to keep moving.

    I realized from after the “proper” amount of healing time of the second surgery that it was far better to keep moving rather than to give in, give up, and just disappear from everyones’ view. With the help of my educated, experienced, humanitarian, doctor (specialist) who used “due diligence” in his evaluation and treatment of my individual health condition, I have been able to keep doing what I love and need to do without harming my body and existing health.

    Chronic pain does not always “show” with a persons outward appearance but, it is real. When I first realized or was informed that my medication that had been prescribed to me for 5 years, not increased in strength or type was going to be reduced, I was really not too concerned. Even my doctor at the time knew what the future of prescribing pain relieving medication was going to be so radical. The agency that knew my personal health needs BETTER than my physician has made a bad miscalculation but, even more distressful, will not place the business of healthcare back into our personal physicians discretion. No worry, when informed of a medication reduction. I was dealing with the “bad” days with what I am being prescribed, it will only mean a small reduction in medication, if any. My doctor knew my personal health condition and it was recorded. I have had no bad health repercussions from opioid medication. Was I WRONG! The “guideline” and accompanying medicine “conversion chart” FORCED my doctor to reduce me by 80% in daily medication. From 100 milligrams per day, to 20 milligrams per day. I can no longer endure the everyday/nightly pain. My blood pressure rose so much that my BP medication has been increased.

    I still say I was fortunate because even with pre-guidline medication dosage, some days were unbearable and I could not function. I stayed home until the pain “spurt” again became low enough for me to continue on.

    I believe all will admit that there is a DRUG ABUSE problem in this country but, not an “opioid epidemic” as the CDC has chose to call it for re-enforcement thinking from the elected officials and the public to assert their authority. There are MANY different varieties of chemicals made and distributed to those seeking the “high” not pharmaceutical, but illicit concoctions that the high seekers will continue to locate AND use. There is NO HIGH among the chronic pain patients even when adequate medication was prescribed. Only a little pain relief so that we could feel as if we ‘counted” for some good in life. To reduce ALL prescribing of opioid medication “across the board” is a completely ignorant approach to reduce drug abuse.

    I do NOT believe the mortality rate with opioid medication, prescribed, will decrease at all. Education, parental guidance, school teacher guidance, self respect, and responsibility WILL lower “drug abuse” but, not completely.

    If true results are to be accomplished with drug abuse it will take a multi-venue approach. Chronic pain patients are only suffering worse with the enforced ‘guideline”. I have complete confidence in the nations opioid prescribing doctors and those prescribers that use poor judgment, forget “due diligence” in prescribing before the “guideline”, were found out, evaluated ( audited) and properly “ministered to…..or relived of their license to practice.

    Suzannes narrative ‘fits the bill” of millions of chronic pain patients that are in worse pain now, losing their jobs, awakening to another day wrestling within themselves if they can accomplish their daily tasks whether it is preparing their own meals, getting their children off to school, or even searching deeply for the will to survive the day. I have been fortunate that the failed surgeries and the continuing deteriorating back discs has been a slow process. I have been stable on sufficiently prescribed medication, not asked for “more”, or sought after illicit substances illegally made and distributed NOR will I. Thank you, Suzanne for your narrative that so precisely portrays the MANY that deal with chronic pain. It demonstrates the complicity of such a “mis-treated” health condition that millions of us would simply rather not have and be persecuted for.

  22. Lorene at 9:23 am

    Dearest Suzanne,

    I cried while reading your letter…this is my life. The only difference is , my feet are now deteriorating. My tendons, muscles and nerves are shattered. Its called the broken feet syndrome for short. I don’t know which pain is worse, the back or legs and feet. My podiatrists delivered the news to me last week, that my days of walking on my own two feet are numbered. That news is still processing slowly in my soul. I’ve been through this kind of news before. I was told this about my back when I was in my mid thirties, I knew the news was bad when he walked in the room and avoided eye contact with me. It was a well we’ve pretty much tried everything we can…soo just keep using your tens machine an we will set you up with another nerve block, have a nice day! I cried all the way home. The only positive thing he did say was that none of this is caused by my diabetes. Fibro will make it feel worse , meronas on my lower limbs are killer . I will continue to be as active in my life and my family lives as possible. I’m an optimistic soul. I just wish that the media, public, DEA would please leave us true pain patients alone. We need our meds, we don’t abuse them, we just want to participate iin life, smile and have some semblance of a “normal” life.
    Thank Suzanne for this blog. I love it, you’ve helped me tremendously. It helps to know we are not alone in this nightmare. Take care, God bless

  23. Ellen Falvey at 7:35 am

    Suzanne, Thank you for your post. I have Trigeminal Neuralgia, an incurable pain disease often referred to as the “suicide disease”. Every morning just before I open my eyes, I pray that this will be the day the pain is gone. It never is. When my feet hit the floor, the sharp electric-like shooters go up my face. Brushing my teeth is unbearable, but I do it. I don’t have a knight in shining armor, it is just me. I hurt too much to type anymore. God bless you and I hope today is a good one for you.

  24. M at 7:25 am

    Suzanne, we go back to family because we WANT them to love us. To show love. We keep thinking it will change. (and it does from time to time but not for long.) It is like batting your head on a steel wall.

    The stress increases our pain.

    As your body tightens up with stress your muscles and tendons tighten too and the physical pain blends with the mental anguish of not having a Real family.

  25. Cynthia at 5:34 am

    Very beautifully stated…I can especially relate to how hard it is to face the day. Do any of your support blogs have openings for new people? I didn’t realize there were some in Facebook. Thank you…Cindy, DDD, neuropathy, sciatica. Everyday is a challenge, all day…thank you…

  26. Donna at 3:55 am

    So much like my life that I thought it was me!

  27. Barb R at 3:36 am

    Dear Suzanne: I’ve written to you before but I can’t believe you have such a lovely life! My days & nights are like yours but without a devoted mate and nearby grandchildren. I’m still trying to be 100% independent but my daily lists stretch into a week. Suggestion: have you ever taken Probiotics to strengthen and balance your gut? They help me a lot so that I can enjoy a nice variety of homemade simple foods. Thank you for sharing your Daily Life; my cat takes care of me like yours does. Your husband is an angel! Keep writing — you’re giving us great gifts.