My Calendar Hurts as Much as I Do

My Calendar Hurts as Much as I Do

Kerry Smith

Kerry Smith

By Kerry Smith

It has been one of those weeks. I began the week Sunday night with heart palpitations and nausea and Monday morning torn between trying the new Hydrocodone extended release pill and totally stopping opioids altogether while spending yesterday in my family doctor’s office undergoing blood tests and an EKG. Today I have taken steps towards changing pain management clinics and attempting to go in a different direction with my pain management, one I am not so sure I haven’t already tried but my body now asks me to pursue again.

You see, the change agent in this pursuit is my body which is revolting against opioids which I have taken on and off, mostly on, for 14 years. Attempts at trying to discover a way to have my pain managed by a doctor familiar with medical marijuana have been fruitless in a state that is against the use of cannabis and I now am having to work with a system bound to opioid engineering. This is as awful of a place as I have ever been in! And I cannot meditate nor exercise nor vitamin my way out of this one either as my body continues to change and not for the better or younger. Dear God in Heaven, what is it that has grabbed me and my friends right under our noses in the name of sound medical knowledge?

As desperate as this sounds right now, right now in the midst of the squeeze I find myself in, I do not see this as an end. But I swear, I swear this just has to change, doesn’t it? We all believe that our great republic will stop this, don’t we? I mean surely there is someone reading this right now and they are saying, “within months, there will be a pain pill or a procedure that will give help to you and the 108 million chronic pain suffering adults and give them the relief needed to once again be whole.” Am I hoping beyond hope here? Am I?

I am just not sure. The war is on opioids. And what this says is that we must declare war on that which is attacking our friends and loved ones kind of like the new mosquito born virus Zika. Billions of dollars are being spent on research now on how to prevent it from spreading which is about billions of dollars more than is being spent on a national strategy to end chronic pain.

It isn’t right, nor is it far!

Tomorrow is coming and I am not sure it will be any better but what I will be doing is contacting the 5 different doctors that have treated me over the past 3 years (no I have not doctor shopped; it is simply all of the different parts that have gone bad in my body) and attempting to have all of my records sent to a Pain Management and Rehabilitation Clinic where I will undergo new testing and where we will create a new strategy for my own suffering.  The new one may or may not be much different than what it is now but at least I will be attempting to move forward, and that my friends, my pain suffering friends, is the absolute most that any one of us can do for each of our conditions.  In the meantime, will someone pass along our dire situation to someone who gives a rip because whatever is being done is just not good enough.

The time to act is now.

Editor’s Note: Kerry Smith is a former minister, a professional artist, and has suffered with chronic pain for 14 years. He has lectured and written on the topic of chronic pain for several years. Here’s a link to his art studio website.

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Authored by: Kerry Smith

There are 15 comments for this article
  1. Jill McCoy at 8:33 am

    I feel so badly for all of you posting here. As a newbie to the site I’m already benefitting from the experiences you are kind enough to share. Maureen, like you I love camping, hiking, biking. Diagnosed with OA in my lower spine 32 years ago I was told to keep weight down, stay active, exercise and I did it all! I am a fighter! But no one tells you how devastating it is when you have to give up all these things you’ve grown to love! There is no cure for my disease. I’m getting old, difficult enough without severe pain, almost unbearable with it. But we have to remain fighters, allow ourselves meltdowns when needed, count our blessings. and just keep moving…. my mantra

  2. Jill McCoy at 6:03 pm

    Thanks so much for your reply to my query. I was told by two surgeons that fusion surgery would not help with my back pain. Now I have one that wants to do one from T11to S1. Yikes!! I’m scared because that’s so extensive, with as Kerry said no idea regarding outcome. I worked in medicine before I retired and swore I’d never get spine surgery and I have a friend who’s an orthopedic surgeon in Chicago who’s firmly against. Both my pain management doctor and this surgeon are telling me I won’t be able to get my pain meds in the future trying to push me into a decision. I am 71. I need more faith in the procedure and don’t want two years of pain with poor outcome. There’s never going be any guarantees, I know. Really having a hard time with this one! I have severe spinal stenosis at two levels, bulging discs, scoliosis, osteoarthritis, ect. Your input is much appreciated !!

  3. Jean Price at 8:02 pm

    Jill…deciding on back surgery is difficult, and I think needs to be approached in several ways. It’s also so very personal, and depends on what the particular medical issue is. Speaking from experience, I’m afraid! My first surgery the doctor told me the timing was whenever I wanted to be out of pain! I had a large, mushy, herniated disk at L5-S1. My biggest issues was I started falling up the steps because it want allowing my leg muscles to lift. Things went seriously down hill after surgery, no ones fault just a complication of what the surgery was about. They didn’t remove the whole disk, purposely, and a week post op a fragment dislodged and almost amputated the nerve root. I had another myelogrsm which actually showed my back was five times worse than prior to surgery, the doctor’s words! So back to surgery at my two week point and many issues for the next year due to the repeat anesthesia and mylegram dye. I made a good decision to have the surgery, I picked a competent Doctor…but I had a poor outcome. Outcome is always a crap shoot…not within our control or our doctor’s control. I spent the second year in physical therapy, five to seven hours a day and returned to almost minimal strength and function. When I returned to work at a lesser job, I lasted six months and it all blew up again. At this point, after two consults of differing opinions, I went to a specialty clinic in Texas and saw a doctor who only does surgery on those who have had multiple problem/multiple surgeries. He recommended a 360degree fusion at two levels ( through the front and through the back!) and said we should part friends if I wanted to be out of pain because it wasn’t possible, but he felt with stabilization I would be some better and there would be less jerking on damaged nerves with movement. He also told me the disk itself exudes an irritant and unless the disk is removed, pain can continue. I took several weeks to make the decision…marking and S on my calendar every day my pain was high enough I wished I had the surgery to just see if it would help. At the end of the month, I only had three days without an S and my physical therapist said my entire hip muscle wasn’t working and I was walking using my core abdominal muscles. That’s why my pain had so increased and also now included severe abdominal pain! I tried many other things during this time, from acupuncture to massage to trigger point releases and finally decided I would risk the surgery. It did improve some pain and some function, and of course it caused other pains. Today, it’s been over twenty years, and I have the ripple effects, plus a deteriorated knee, RA, and two neck surgeries to add to my pain and inability to function. Am I glad I had the surgeries? Yes, they were good decisions. Am I glad I had the outcomes? Who would be?? I had hoped for better…meaning less pain and more function! Do all people have complications? No, some do okay, some don’t. A physical therapist once told me surgery does what two years and continuing to be active and use physical therapy will do for back issues. That’s unless it’s a bigger issue than pain, as in pain and nerve pressure causing sensation loss and permanent function loss. I had my first neck surgery because it was so bad I was a risk of paralysis if I stubbed my toe and fell. Or if I had a fender bender! I also prayed a lot when making my decisions. God won’t decide for you but I do know He does block things in our lives. Even when we don’t believe! (I have a daughter I wouldn’t have if He had not blocked the surgery I was scheduled for to help me get pregnant years ago, and I can’t say I truly knew He was up there then. I was already pregnant and didn’t know and had even also had a negative test the day before…but my doctor repeated it rather than get the report sent!). Whatever decision you make WILL be the right one…outcome isn’t part of the decision, though. We can only hope and pray and wait for the results. My thoughts and prayers are with you. Message me if you have questions!

  4. Maureen at 2:38 pm

    @Jill McCoy
    I have had 3 lumbar fusions…I surely regret it. If I only knew then what I know now! I surely suffer greatly and as I’ve aged…my activity is more and more limited.

  5. Maureen at 12:09 pm

    Hi all, the more I read over time the more I become familiar with the fact that although we all are different in how our pain journeys began… we are so much alike in our treatment journeys.
    The majority of us have been through it all by now…have a shared empathy for each other and know each others plight with pain all too well.
    I recently chose to decrease the ‘dosage’ of my opioid that I’d been on for several months mostly due to blurred vision and increased fatigue/spaciness.
    When that dose was increased months ago I was fine ‘enough’ on the dose I had been on for 5yrs (with less side effects). A new doctor (I had moved to a new state) increased the dose without discussion. She also ‘decreased’ the daily amount… that alone threw my body into a frenzy and my nights became torturous without a nighttime dose anymore.
    Oooo, it’s such a long story but bottom line is that I finally went to yet another new doctor 3months ago, after ongoing horrible treatment by the previous one, causing me great stress.
    The new one listened and gave me back my original med..dose and amount.
    Now, my body is unfortunately a mess. It had become used to a bit less pain with the higher dose (but which caused the side effects) and after 3 months I just can’t seem to get ‘any relief’ anymore. It used to work before it was changed on me!
    More stress. More pain. So I’m adding chair yoga and Therapy and Reiki to my mix, for now…when I can possibly make it there. I never stop seeking good help. It’s my job.
    My message to the docs out there…please please listen to us…it is our bodies that are being effected and we know our journeys very well. We know how the meds effect us, both good and bad. Please don’t ‘use’ us for your benefit.

    Kerry, in regard to the long acting hydrocodone…my own experience…
    Last year I had been put on both 24 hr. Zohydro and Hysingla (at different times, of course). My body metabolized them both at about 16 hrs. therefore I needed 2-3 breakthrough until the next dose of the 24 hr med.
    But….I was refused them. I therefore spent my life in bed crying in writhing pain from 2 pm until the middle of the night.
    Also, I had side effects… nausea, blurred vision and lots of itching.
    I even called both pharmaceutical companies and spoke with their research doctors who both informed me that those meds were early in treating the pain community (this was a year ago) but that doctors certainly need to give their patients at least 1-2 breakthrough meds since they were finding that it tends NOT TO LAST 24 hrs. The med peaks at about 10-12 hrs. in our system, then decreases. I told my doc that and was not believed. Choosing Ignorance.
    Bottom line…
    I was yet another Pain Management doctor’s ‘experiment’ in this state that I moved to. My pharmacist nor my primary doc had never even heard of those drugs.
    And I’ve yet to meet anyone else who is on either.
    I’d love to hear how you do with it. The best of luck. On a positive note… I did well with the Hysingla in the morning hours…would wake up not even thinking of having to take a pain med (I took it at 8pm) since it was at its’ peak when I awakened. I kicked off my day feeling so good. But come afternoon…it was like I had nothing in my system.
    I send you and all others encouragement. Life in pain is very hard, and it is our full time job in taking the best care of ourselves as we can. ‘Keep on keepin’ on’.

  6. Jill McCoy at 5:52 pm

    Kerry, I think you were the blogger who had fusion surgery on your back and regretted it. This is where I am with a tough decision to make on fusion. Did it help at all, for a year or two?

  7. Ellie at 1:17 pm

    Kerry, just a note to tx you for sharing your journey as it sounds interesting & @ the same time exasperating. We all have something we are going through but I absolutely wish you the best outcome. I believe your main message is moving forward & I am so glad we are on the same page because I believe the smallest step in regard to moving forward, is ever so rewarding even though others fortunate enough to not have to deal with chronic pain don’t always look @ it this way & that’s ok that they don’t get but I’m super glad you are reinforcing that message. I’m hopeful that you have supportive physicians as they are difficult to come by & I realize that. Let us know how things are going with & your progress Kerry.

  8. Sherrie Harris at 7:13 am

    Thank you for your taking the time to write about your journey in the life of chronic pain. People who don’t have it don’t understand and that’s what’s wrong. There is no compassion in this world for us. They view us as addicts instead of people whom have several things that causes pain. There is no cure. Only meds to help. I use to be a very active person when I started with my pain at first thought I was crazy well MRI told another story. A story of pain with nothing they can do about it but keep me comfortable which is what he’s trying his best to do. I have a compassionate Doctor whom understands pain. He doesn’t treat me like a addict. I am thankful for the Doctors I have. But the government views us as worthless.

  9. Brenda waddell at 6:16 am

    This is crazy CVS is the gate keeper of my meds I truly do not understand these new laws.wish someone would publish them.I understand as well as most people you have to pick up percription they only give you what is ordered so I get a month supply of narcotics have for 14 yrs also get shots in my back been with same Dr 35 yrs,I was 2 days late picking up my prescription so CVS penalized me and made me wait 2 more days to get them my Dr hates this new law as much as I do please explain why I was penalized?

  10. Joe W. Cline at 5:57 pm

    Unfortunely I was injured in 1992 as nurse in a federal
    Hospital. OWCP is so hard to work with after 5 trips to
    The O.R. In the 1 st 6 months without any p.t. the biggest mistake that a dr. Could ever make and as a
    Nurse I knew that, but if in pain you will try anything.
    I was told for the first 2 years ” it’s all in your head”
    You are just a drug seeker, there is nothing on X-rays or
    Scans. Finally after a dr had her students surround me,
    As she blew lightly on on left leg I came straight up off
    The stretcher. She then sent us to get a Medtronic
    Spinal pump at L4-L5 verses a spinal cord stimulator I
    Had been given a diagnosis of RSD. The start of a very hard road for those of us with pain that stays at 8-10
    Out of 10. You build a ressistance real quick, even to
    Twilight you for surgery you end up with a tube in your throat even after what was to be minor surgery, wow by this time now I have had 3 pain pumps and my entire thoracic back has
    Bilaterally rods and now
    Have been on almost every narcotic I am aware of but now am using Subsys spray. It
    Is very pricey to put mildly. We have just had an IME (suppose to
    Be an independent dr
    Opinion of you) done in
    2/16 will find out what the finding are in 90 days or so. Today I would give nearly anything to be drug free an be able to hike, bike,
    Camp, and just have fun. This has truly taken
    Away my quality of life
    Many times over. Thank God for my Wife who will have been mine on
    12/28/2016 for 25 years.
    Even with this life changing injury we have
    Thrived through good and bad. Now for the last 2 yrs my son has given me the best care I could ask for. It’s like last year I had 9 times of hospitalization a nursing home admittion for 85 days after a major stroke and the loss of
    Great muscle mass.
    But for some reason Am still here. We sent one grandson to drug rehab
    Who has done very well
    According to mother. We just live life one day at a time just give us a way an we just take all
    Blessings one day at a time.

  11. Gale Jenness at 5:06 pm

    I know how you feel, I’ve been on either morphine or methadone now for 16 years! You mentioned stopping your pain meds or opioids, be very careful doing that cause stopping too quickly can cause serious health issues and the withdrawals are no fun either! You can have a heart attack or stroke and even die! So follow doctors advice very closely! I’ve been told by my doctor that I’ll never be able to go off of methadone now completely, I will have to stay on some amount of it forever till I die! Although I haven’t been told how small amount that may be yet? Just know they been wanting to lower my dosage slowly. I take 40 mg. daily now and still have a lot of pain to deal with, cutting my meds even more just going to make my pain unbearable! I know this cause I have tried to lower my daily intake many times on my own and I suffer for trying something awful. I live in Washington, but had to find a Oregon doctor to get my pain meds from! I have tried Mariwana but really didn’t help me! Wish it had, but seems I’m stuck with the Methadone whether I like it or not! Pot is suppose to be legal here, but state government making it harder and harder to get pot along with increasing costs unbelievably high! As always, if the government don’t want it to happen regardless what the people say! The government finds another way to keep people from getting it! I believe all the people in pain need to unite and start making ourselves heard loudly that were not going to put up with anyone taking our pain meds away till they prove they got something better or fix our pain problem all together where we no longer have pain. Till then leave us alone! People in pain are barely living as it is and many of us question ourselves what’s the point of going on living like this on a daily basis already! Then these jerks want to make our pain problems even worse then it is now. What the blank are they thinking? They need to feel this pain for themselves with no relief in site, then see if they want less pain meds? Believe me, if I could avoid taking it, I would of stopped myself long ago! If I could take less and function to some degree, I would of done so myself long ago! It’s not from a lack of trying, cause I’ve tried to weane myself off this crap many times over in the last 16 years! Just doesn’t work, pain gets unbearable! Besides, what’s the point of taking us off these meds in the first place? It’s not going to help our pain level other then to increase pain! They say these drugs may kill us, so what! You think we want to live in more pain over death as a option? Ask anyone if they choose more pain or less pain and possibly dying and I bet the majority would gladly accept their chance with less pain. I know I do! So what are they really doing, forcing us to commit suicide? Their taking all our options away and leaving us with only one option. Death! I guarantee you that suicides will increase beyond belief and it’s going to be the government fault for allowing this to happen

  12. Jean Price at 8:14 am

    Kerry…I wish you a great outcome from your pursuit of a better life…that’s all any of us want and yet we seem to be headed away from this, not toward it! Like you, many have multiple medical issues…some that actually prevent dietary and exercise routines that might be helpful for the general public. It’s hard to meditate in pain, or do relaxation unless the edge is taken off by something that allows this first step of getting a little comfortable and getting into the technique. Yet pills alone don’t stand much chance of giving us a better life. Pain care used to be about using ALL of the modalities that were proven to lessen pain. Now it seems to be about rehab clinics making more money and out of control grief issues for those who have lost loved ones to addiction! Through in the power plays of bureaucracy and politics and up you have a real mess! Unfortunately that mess is our lives now, and when you feel moved to try something new, something different…I think you have to go for it! God knows none of us enjoys living a life with pain! And most of us are still hoping for a better tomorrow that makes medical sense and personal sense of our issue of pain.

  13. Ed Stines at 6:45 am

    I think I am just too tired to comment except to say “Thank You” for expressing how most of us feel. Compared to you, I am relatively new to this and just keep getting worse. My doc prescribed an ER oxycodone RX which would work in addition to the other stuff I am taking, just to stop the continuous pain. Well, after a week, my pharmacist says my Insurance does not cover it so they are waiting on my doc to either come up with an alternative or call the Ins. Co and justify why they should cover it. I am still waiting, in pain, but still waiting. Hard to accept this as my regular day existence after a life of active sports and gardening. It is hard.

  14. Karl Zaremba at 5:03 am

    Yes it stinks. Try it without any insurance and decreasing funds. It is bad

  15. Darla Long at 4:55 am

    The government is systematically taking away our rights one by one. We no longer enjoy religious freedom in this country because our beliefs may hurt the feelings of another. And now the government is protecting us against ourselves by taking away our right to decide whether or not treating our chronic pain with medication. In essence they are labeling us as drug addicts if we need pain meds to function in a somewhat normal way. They are saying we are so irresponsible that we all will end up dead by overdosing on meds. This is absurd. I was prescribed Hydrocodone 10/325 four times a day for ten years by my doctor who I had been a patient of for 27 years. When I moved to another state 9 years ago my new dr continued my treatment plan until the CDC took it upon themselves to take control of my treatment plan. Now I am on Hydrocodone 7.5 twice a day. It gives so little relief. I sit here right now with a fractured kneecap. The pain is nearly unbearable. When I asked for something for pain in the ER I was given 5 mg of Hydrocodone. I may as well taken a Tylenol. My confirmed fracture left no room for doubt that I was a drug seeker. I also couldn’t accept a prescription for pain meds as I was under a drug contract with my pain Doctor. This is ridiculous. The government has not just declared war against drugs but rather declared war on people suffering chronic, sometimes debilitating, pain. We have been singled out as a whole because of a portion of people who are true addicts. People who will turn to illegal drugs just to get high. People who will continue to die from overdosing from whatever they can get their hands on. This invasion into my life by the CDC is unconstitutional as it infringes on my rights to make my own decisions about my very body.