Hope

Hope

By Joanna Mechlinski

Most people I know spent December in a frazzle, engrossed by various holiday-centric issues. The people with chronic illness or pain had additional concerns, as of course stress is the major thing that exacerbates their symptoms. That, in turn, leads many to feeling guilty, as they feel like they’re disappointing their family and friends if they aren’t able to participate in all the holiday magic.

Joanna Mechlinski

But as for me, the month of December only brings a feeling of hope. The weeks until the holidays pass quickly, taking us to January of a brand new year. 

The way I see it, the fresh page of a new calendar is truly symbolic of the promise that lays ahead. While it’s true that all calendar systems are just manmade ways of keeping track of time, it’s also true that the concept of a “new” year fills many of us with hope.  As poet Emily Dickinson wrote, “Hope is the thing with feathers/That perches in the soul.” What better way to describe that niggling sensation that refuses to extinguish fully, no matter who you are or what your life’s circumstances? January is the month that leads to another 365 days of fresh opportunities where literally anything might happen.

Likewise, no matter how long you’ve been living with chronic pain, admit it – there is still a tiny part of you that refuses to stop hoping. Maybe this will be the year that science unveils some new medication that will dramatically increase your quality of life. Maybe, even, you might simply go into an inexplicable spontaneous remission – we’ve all seen those kinds of stories in the news from time to time, right? Why can’t it be us one day?

At this point in my life, I’ve largely come to terms with the reality of my life. I was diagnosed with lupus and polymyositis, a rare muscle disorder, at 22, picking up additional diagnoses of rheumatoid arthritis and fibromyalgia along the way in the 16 years since. I’ve done my share of sobbing and screaming, both literally and metaphorically. I mourn the things I am no longer able to do and the things that I’ve had to learn how to alter. But although the practical, intellectual part of me often chides me for any optimism – after all, how many different doctors, hospitals, medications and alternative treatments have I already been through over the years, each time mentally going up the metaphorical roller coaster, only to get slammed back down when whatever new thing invariably failed? – I find hope has taken up permanent residence inside my soul. Who’s to say that 2019 can’t be the year that my life changes dramatically for the better? The belief in the possibility of a better tomorrow may sometimes be better for us than anything else.

 

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Authored by: Joanna Mechlinski

Joanna Mechlinski is a former newspaper reporter who now works in education. She is a chronic pain sufferer who lives in Connecticut and is a frequent contributor to the National Pain Report. You can follow her on twitter @castlesburning.

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Lost Hope In Arizona

Hope is the thing with feathers !!
Mine Flew Away !
It got lost in the strom of politics
And in Doctors asses that cower to the DEA / CDCs etc
Hope also abandon me while i was trying my best to convice my self I am not in pain

The only hope I have felt is this site and the Rally coming up in Az Jan 29 2019

Glad people with more money and good friends etc have and keep hope Kudos to you
And I do Hope others stay strong
And Positive 😄

I hoped my Doctor was really listining to me ,,He wasnt !
I was Hopeing that my meds would still work after the last taper .They Dont !
I was Hoping to have some respect as a human being from my care givers , I was wrong
I was Hopeing for understanding
Nope not there..
Only HOPE I have found, has been this site
“Dont Punish Pain” Rally
Is my last and only Hope

Thank you
Sincerely
Hopelessly Rose

Jill, nothing can be done for your shoulder? That must be excruciating . I also deal with shoulder pain. my last MRI was 10 years ago & the doctor refuses to do another MRI stating it’s very expensive. Went to ER cuz my back recently went out again had severe burning in the legs could barely walk. Was told @ ER that I’d have to go back to my physician & asked his permission for MRI because it’s very expensive. My neighbor went through similar issue with her shoulder for years & she finally had a heart attack & that was causing her shoulder pain all along for years. It was the backside of her heart. Thankfully she survived. But the weird thing is her daughter is a physician. Yes it is very scary. I don’t understand why I’m being turned down for MRI or for the hematologist to tell me I have to ask my physician for referral to see him again. Even though I thought I had another blood clot. Which is emergency situation. I haven’t been to the ER except once in eight years nor do I frequently asked for MRI. How can anyone get well or out of pain if Physicians ignore you. May God bless you in your situation.

Jill

Margie, medicine today is scary and you’re right. You need to be your own advocate to get the care you deserve. I had a similar but not so serious situation with my right shoulder. For over a year I had three doctors tell me my pain was from tendonitis, giving me shots and exercises. It wasn’t until I insisted on an an MRI they found a large rotator cuff tear and bicep tendon tear. The really bad news, now too big a mess to fix. Go forth and live in pain, ma’am. As I said scary!!

Jill thank you for your concern. Notice in my statement I said I saw 6 doctors some of them more than twice. So that means they all made terrible medical decisions until I said take me seriously. There’s two points to make one believe in yourself and fight for yourself & 2 seems to me all Physicians are cut from the same cloth. I did tell p. Management that it felt like a pulled muscle in my leg. They were more concerned about if I was going to stay since the physician stop prescribing opiates. The PA glanced at my leg and not very thoroughly when I rolled up my pants legs. I saw them twice stating the same issue but even telling them I’m having horrible nerve pain and I cannot put weight on this leg, I even came in with a crutch which was unusual for me to do. Not a word was asked about my crutch or documented . Their main concern was me signing papers stating that I been notified they are no longer prescribing. Second time wanted to know if I was going to stay at the clinic or not. It was more about knowing if they were going to get continual business than it was about my health. I had noticed in the waiting area was pretty much empty. It usually was very crowded. They ended up closing the clinic.

Jill

Margie, so happy you survived such terrible medical decisions!! It is true most often dvts are in one leg but it is not uncommon to have both legs swollen. With your arm history its unbelievable that possibility was ignored. You need a new PCP!!

Julia Heath

Thank you for your message of hope! As with you, hope does reside in me & I protect it, and my peace, fiercely. The greatest thing is that my hope is in the Lord Jesus, who has been faithful to keep me surrounded by his love during these difficult times and even more so, has given purpose to those painful things I go through. I tend to be the eternal optimist, so thank you for your commentary that feeds that important part of me!

Terry, i agree with Jill. I had 3 DVTs in one leg at the same time. At that time i was in pain management. P.Management pond it off as fibro twice, pcp said it was my chronic tendonitis, reumatologist blamed fibro and tested for gout. No gout. After 4 monthes & 6 doctors later, i went back to pcp & demanded he take me serious. Immediately Sent Me to the ER. ER confirmed that yes I had 3 dvts. When I ask my PCP why didn’t you take me serious the first time ,why didn’t anyone take me serious he said it was because both my legs were swollen. Fibro doesn’t make your legs/ feet swell. Tendonitis doesn’t make your leg swell as bad as my legs & my feet were. Why didn’t pain management take me serious? they barely even looked at my leg. I told the six doctors plus seeing some of them twice that this was a new & different pain & it was severe . When you have chronic pain Physicians no longer pay attention to any additional pain problems. I could have died two years ago. if I hadn’t stood up for myself & say would you please take me serious. In the kicker of all this is ,the year before I had a DVT in my arm that should have been a red alert to what happened to my leg. Be polite but be firm & just say please take me seriously. Your life may depend on it. Physicians didn’t take my cousin seriously he died from a DVT and PE that went to his brain.

Jill

Terry, please tell me they’ve ruled out a dvt. Hope it was the first test ordered. I’m sure that’s the case but I’m worried about you. Best of luck with next appt.

Amy E Vogel

Thank you, Joanna! For the first time in 3 years, I DO feel some hope!

To Susan & Terry: it sounds like both of you may have CRPS – complex regional pain syndrome. Has it been suggested as a diagnosis? I have it in my right foot. Please research it and doctors who can help. I’d have to say the single most important thing that helped me was injury massage by a wonderful therapist.
I would be happy to chat more and share more if you are interested. I’ve been where you are. I know how you feel. Please continue to fight. Don’t give up!
Amy

Terry

I’m glad you are hopeful for 2019, I truly am. I wish I could muster up some hope but the last ten years have all but been stolen from me. I have numerous chronic pain issues of which any one would be devastating, along with 1 to two major surgeries every year for ten years in a row. My pain meds have been reduced from 195 mgs of Oxycodone to just 75 mgs and my doctor said that would be it. Mentally, at least, I’ve excepted the new dosage and am dealing with it to the best of my ability. I have been at this dose for going on three months now. Well my last appointment, Jan. 9, he said he had to lower it again! I was not prepared for that at all, and it was a big change, he knocked it down to 55 mgs and he said he was going to knock it down one more time! What a dirty trick! My orthopedic doc wants me to have 2 more major surgeries (#20 and 21), back to back, and it’s only because my sed rate was 93 and my CRP was 40, a sure sign of an infection. It doesn’t feel infected and I don’t think it is, I requested a bone scan on my leg, which is the gold standard test when trying to prove an infection. I had the bone scan and it came back negative, no infection. So I went to a whole slew of new doctors starting with my family doc and he recommended some other docs to see and to have all info go back to him. Well I have one more appt. with a rheumatologist so we’ll see. So far nobody wants to dig into why my leg is always swollen, red, hot and painful 100% of the time. Out of all my ailments, my leg alone is absolutely debilitating and the worst of all of them. I feel like giving up, there’s no hope for me in this coming new year. I usually try and keep people positive but now I just give up. I don’t want to do this anymore, I can’t. Try and hang tough, I just can’t do it anymore. God bless you all. 🙁

Jill

Susan, is it possible for you to go to another pain Dr. In another city and start fresh? Explain your pain calmly, do not beg for meds, but rather state you need another opinion as you are confused about why the pain is so much worse than your injuries indicate. You have to learn to manage your pain more stoicly. Do not appear desperate at appointments. As an Ohio resident I understand your plight and retired from a medical career, I know high drama with a doctor is unlikely to impress. I also understand how hard it is. I really do. Find your inner strength and inner hope and believe it will get better. I wish you the best!

This is to Susan Domokos, I know the heartache that you’re going through but you have to realize that doctors are in the buddy system that means I kind of like gangsters are going to stick together. I suggest you get your medical records from all the providers. Unfortunately we now live in the let’s blame the patient and discredit their character. I believe you. This article was helpful to me. Titled ( lies in the doctor – patient relationship) http://www.ncbi.nim.nih.gov
Doctors know we are forced to rely on them and that gives them way too much power over us. You have to start relying on yourself. The doctors are no longer there for chronic pain people. I know the Betrayal of the white coat is hard to deal with . . Take each day one day at a time. If we lived in a time where there was rarely any doctors available what would you do then? This is the mindset that chronic people have to have now. You are stronger than you realize. Sounds to me like you’re doctors are setting you up to have you put in a Rehab Clinic. I’m sure this is happening to patients all across United States because that’s where the money is now. Pull yourself together and get away from these negative doctors because they’re just increasing your anxiety. If you’re able to move I would move to a state that allows marijuana because Medical Care is where it’s going to. Doctors are so afraid that they’re throwing their patients under the bus. When you to try to do the right things and follow the doctor’s orders and that’s used against you is really screwed up. Take care of yourself best you can.

ElizabethR

Hope is not always in ample supply when one is 82 and living with pain. Continuing to live independently is a top priority for me, and that isn’t going to change. I will do all I can to find my own way out before I end up at the “mercy” of the elder care system! I’m not ready to die just yet, but there are days when I’m existing more than living. I expected some additional aches and pains as I aged, but I didn’t sign up for chronic pain day in and day out.

I’m not religious and have never believed that suffering is somehow “ennobling” or guarantees one a special cloud in heaven (or wherever). I do realize how lucky I am that I’m not the victim of government overreach–yet. I haven’t been cut off the mild medication that I use responsibly, but constant fear and apprehension do not enhance my quality of life, which has already deteriorated due to undertreated pain. Older adults and others with painful medical conditions did NOT cause the “opioid epidemic” but we are certainly paying the price.

Maureen M.

Hi Joanna, Happy New Year. It is so good to hear from you again. I love reading your posts. Thank you so much for the reminder of HOPE IN A NEW YEAR.
Living with chronic spine related pain, 4 failed spine surgeries etc, diagnosed with Fibromyalgia 8 yrs ago and this past July I was diagnosed with Systemic Lupus (SLE)….another whammy to learn to live with and manage.
I hang on to Hope in God to get through it all. I’m hoping that this year I can accept and manage my illnesses even more.
God bless you for your eloquent writing. Keep strong Warrior!

@Susan, my heart breaks for you and e position you are in with treatment. I wish I could heal you and take it all away. I’ve been through the ringer myself with pain management doc’s etc…its emotional torture. The anxiety from it all only increases and it worsens. Know that it is not your fault. We hear you and support you. All I can say is that I will be praying for positive changes and inner strength for you to carry on and HOPEfully find better care and help.
Hang in the sister! Sending a hug, Maureen M.

Katie Olmstead

Susan, we do hear you. My heart breaks for you in this confusion of pain and medications and lack of medications. I wish there was just one person in your circle of care, one practitioner, whom you could trust; someone who could guide you to getting just the help you need instead of leaving you to hang off a cliff. Obviously, there is nothing I or anyone here can do but know that we hear you and your pain and I’m so sorry.

Steve

I have been living with Scheuermanns disease with no help, now my wife has been snatched off of her Xanax she has been on for 45 years, lord tell me what the Dr’s in Mississippi are doing.

Kathy Zullo

Thankyou for the reminder of hope. I have not been outside of my house for over 2 months. Did epidural shots for spine + got worse. Dr said my spine mri doesn’t show damage enough to explain my excruciating pain. Have a nice day. Supposed to go to a new pain clinic but can’t walk pain is so bad. Need shoulder replacement surgery cause shoulder + rotator cuff are so bad I can’t lift my arm at all. Have to do echocardiogram to do the surgery but can’t cause. my spine is so painful. I’m. bedridden against my will. I applaud those who push themselves as I just can’t anymore. I’m out of strength. I cling to hope. My heart goes out to all of my fellow pain sufferers who also get treated like [edit] because they ask for help.

Jani Skeels

Just please HELP. There are going to be many many people who take their lives over chronic pain. I have a list of things wrong with me and have gone to same spine clinic for years. 10 i believe and they are minimizing everthing now. Where do we go what do we do. I dont want street drugs, i just want quality of life and its wearing me down worse. Can anyone help us. We deserve to not be in pain 24/7. Any ideas please share as im wondering if life as i know it is over and i will not be able to do anything. Cry and hope for change. Wish these people who say no opioids would have chronic pain for a long time. That would change thier minds. Until you have walked in another persons shoes, do not judge them.

This is for Susan who commented earlier.
Dearest Susan,
It breaks my heart to hear your story. I’m so sorry to hear of the torture not to mention the humiliation you are being put through. This is ridiculous as well as cruel. Susan I will just add you to my list of people that I pray for daily. I have prayed that God will send you miracles and quickly at that.
With lots of love, Terri

Christine Sparks

First, to Joanna, thank you for taking the time and pain and spending the energy to give us this vital message. May you and everyone reading it and this discussion be blessed more than you can dream.

Secondly, dear Susan Domokos, I hear you and grieve mightily for you and all those who are in your position. The only help I can extend is that you pause and feel the love that is sent you by all of us who know your pain and frustration. And, as outrageous as it sounds, I suggest you spend time in extending forgiveness to these docs who have behaved so badly. This isn’t about them. Believe me when I say that this will benefit you. Whenever they come into your mind, release them to whatever you consider to be a higher power. The only thing we have to work with is ourselves. Also, I truly do believe that new technologies are on the horizon for us. Continue to reach out to us with your story. You are not alone. In love and pain, Christie

Cindy

https://uspainfoundation.org/advocacy/inter-agency-task-force-toolkit/
I’m wondering if people have seen the work that is being done by Cindy ( sorry don’t remember her last name, good old Fibro). She has done so much work into trying to turn this thing around. Please get involved, write your pain story and send it in. If you have a hard time thinking like I do, have someone help you. The only way this will change is for people to be involved.

Cindy

I agree wholeheartedly with you. I know there are so many people suffering, I just can’t believe it can go on. There are people out there trying to change what is happening. I have hope it will change.

Sandra Gunter

How beautifully stated. To be a chronic pain sufferer with multiple health issues, this really says it all. It is a life alterating situation. You have to change your wants and desires into something either avoided it completely tolerable. So those looking in , need to step back, take a deep breath, and walk in our shoes for an hour, a day or even a week. We , as sufferers often wish we were in your shoes. Going about life the way we intended it to be. But we have made changes in order to cherish the little things. Things that go unforeseen by those who take it for granted. So until there is an understanding, I am holding on to HOPE.
S. Gunter

JDTX4893

Thank you for reminding us of the hope that we may find some answers and “cures” for pains this year. So many of us who suffer daily are “fake it until you make it” personas, but reality truly bites without hope. Hope in Jesus Christ is ever more important. God bless. I pray for all of us in the pain community that we will find peace and healthy healing.

Roberta Blades

This is just what I needed this morning, as I face the cold temperatures and icy walkways in the north! With a nod to all of the challenges we face daily you gave us a quote from Emily Dickinson and hit the nail on the head with all of the treatments and medicines we have attempted. But maybe this year will be different! I have to keep trying. I can’t lose that hope. Thank you!

Oh Joanna, so beautifully written! Your endearing article is just what I needed to see this particular morning. Thank you so very much! Hope is truly a wonderful thing. I love the way you describe everything that most of us have been through as being on a roller coaster… only to be slammed back down to the ground. There’s been some of your articles I’ve read in which I’ve prayed for you all day… this will be another one of those days. May God bless you not just today but always and continue to fill your heart with the hope you have and the miracles I pray that will follow. May God bless and give all of my brothers and sisters who continue to live in chronic pain hope and the miracles they’re looking for as well.

Susan Domokos

Because I live In a heroin overdose disaster zone in Ohio…I am currently being emotionally and verbally abused by my pain Dr ..I am being made to feel guilty about having under medicated pain .first ..he took my tramadol.. last month he told me to choose between my pain meds and my Xanax..not tapering me off..
I’ve been told my injuries don’t match my pain… suggested that I am mentally ill..has accused me of selling my meds..and also told me that he will not lose his job over me. Or anyone..my PCP suggested that I admit myself to a psych unit to deal with my massive depression and anxiety..that was this past Thursdays appointment..he said he’s afraid I may kill myself bc of my undermedicated pain..he also said he cannot advocate on my behalf..neither will my psychiatrist..the pain I experience is almost ruining my life.. everything I do is marred by pain In my back legs hips hands joints shoulders and feet . I am only 55..I NEED SOMEONE TO HEAR and HELP ME . PLEASE.

Karl Zaremba

Thank You for an uplifting reminder