My Story: It Will Go Away Tomorrow, It Will Go Away Tomorrow!

My Story: It Will Go Away Tomorrow, It Will Go Away Tomorrow!

Kristine (Krissy) Anderson

Kristine (Krissy) Anderson

I used to wake up in the morning with hope in my heart. I would think, “This is just a bad dream. I won’t really have all of this pain for long. It will go away! This has to be temporary. After all, who could live like this? Who could live in so much pain everyday?”

In the beginning I had aches and pains, always migraines, my legs hurt badly. My fingers hurt. My feet hurt. That’s all. It must have come from having had Histoplasmosis. It will go away tomorrow!

But it didn’t go away. It just got worse.

Now every morning I wake up to face a tremendous daily fight, a chronic fight, a sad and hopeless fight. Because after 31 years, I know this is not a bad dream. It’s a nightmare. I live in it. I am the star, I was chosen as the main character. And I think I should get an Academy Award. That’s because I am 100 times worse off than when I thought this was just a bad dream.

Diagnosis

When I was young, my primary doctor didn’t know what to make of my complaints of pain, so I was sent to a neurologist. He diagnosed me with Fibrositis, the name used before it was called Fibromyalgia. He said it happens to women in their 30’s but it will go away. It will go away tomorrow, I thought. Eventually there were times that I could barely walk for the pain in my legs and feet. I would (and still do) lay in my bed and cry because my entire body hurt so badly.

I have felt so sad. I used to be an energetic mother, a thriving business owner, a daughter and caregiver, an ex-wife:), an exerciser, a camper, hiker, skier, skater, runner, sailor and fun to be around, with a plethora of friends. People in chronic pain lose all of that. ALL OF IT. We live with anger, isolation and fear. And there are people out there in the free U.S. government who want to make our lives worse?

My mother took me to the Mayo Clinic. Surely the doctors there would have answers. I was sent around via wheelchair to doctors and labs for three days, then diagnosed with Fibromyalgia. They said I had the “worst case” they had ever seen.

More Diagnoses

Later I was diagnosed with more — rheumatoid arthritis first. Some deformities started in my toes and fingers. I’ve had surgery to remove joints and repair my thumb/wrist, and my toes. They still hurt. Now, after having been diagnosed with Lupus, my feet are more painful and there are additional side effects. Some include peeling skin, rashes/hives and tremendous weakness at times.

I began to have horrible back pain until finally I got “stuck” and went to see my doctor about it. I was diagnosed with degenerative disk disease (which has now progressed and the pain in my back is excruciating if I do anything other than lay in bed). I have sciatica, spinal stenosis, scoliosis and bone spurs touching the nerves by my spine. I am getting a wheelchair now so I can go out places with friends. I have been staying home for months because I know how badly it will hurt if I try to go to a movie or go shopping, or do something fun once in awhile. I dread the chair…and I dread what comes next — the electric chair. I’ll have one of those when my back gets stuck for good, and I stop moving. That is the prognosis given me by my doctors.

It’s Not Just Pain (What People Aren’t Telling You)

Living with pain is only a part of what happens to a body when chronic disease strikes. There are always side effects of chronic disease. I have had my share. Migraines, frequent fevers with the aches of a bad flu, stomach problems every day, irritable bowel syndrome, foot problems, vision changes, nausea so bad I lay in bed and don’t dare move, difficulty concentrating, embarrassing memory problems, restless leg syndrome, and more. In fact, I never feel good anymore, ever. I feel sick everyday as I live with pain and its side effects throughout my broken body. (When you have diarrhea every morning for several hours and sometimes all day, and when you have uncontrollable restless leg syndrome, opioids are the last resort medication. For me it is now the only thing that helps. I can’t imagine restless legs and arms all day everyday. I would simply and quickly go insane.)

You, the CDC!

You have gone a long way in threatening the very lives of me and my fellow pain sufferers. You have frightened so many. The doctors, the pharmacists, the companies behind them. And you have frightened us into wondering if we will have to commit suicide or ask for suicide assistance if you get your way. You know why? Because it is difficult enough to live in the pain we still have even with our opioid medications, and we cannot possibly imagine living in the pain we would have without them.

You started another nightmare for me, just when I was thinking that I would be a little alright to welcome my new grandson into the world in June, and hold him in my arms and sing to him; I would be alright to live independently for a little while longer. (I imagine the nursing home sometimes. I live on the disability wage, so I would be in a state-run home, and I would be the noisy one screaming and crying in my bed, while in my mind somewhere deeply I can still imagine writing, and traveling back and forth to Minnesota, (with assistance and my dog), and going to a play. I can imagine all sorts of things.)

But I will know that It was you who took away those rights from me and millions of others. It will be you that I would want to attend the funerals of those who couldn’t take it anymore. And it would be you who played doctor and someday would pay for it.

I think I know you now, for I have read and studied what and who you are. You put out suspiciously timely press releases on drug addiction that make it look like those of us who take opioids are going to go on to take heroin and become addicts. That, just on the heels of your re-opening this comments section for people to express their concerns. You make sure the U.S. media from small-town newspaper to network news says what you say — that chronic pain patients are drug addicts and opioids should not be a part of any pain treatment plan. You spend your PR money swaying the country to one side so that we have to work tirelessly to scream out in our little voices, “But no! You have it wrong!”

Why are your interests pointing toward illegalities in the people you chose to committee this? Why do you want controls you shouldn’t possess? Why don’t you understand that we are not the drug addicts and only a tiny percentage of opioid patients will become addicts and the drug-seeking addicts will still get their drugs if you do this? And finally, why do you not have some of us on your panels and committees and put before government houses to whom we can speak? Your plate is full. And you will spill. And the mess will be yours to clean up. Because this isn’t going to go away tomorrow!

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Authored by: Krissy Anderson

There are 26 comments for this article
  1. Krissy at 3:43 pm

    You hit the nail on the head. I spend so much time with paperwork from insurance errors, etc., it drives me nuts. Retirement is a pain in the….. right now! Hope you’re doing ok and thanks for the comment.

  2. Dooney at 9:00 pm

    Krissy I’m so sorry for all the pain you are in and what each day must be like for you. I have been a chronic pain patient for 12 years. When I talk to friends about chronic pain, I tell them the physical pain is about 50% of what I deal with.
    The other 50% is dealing with insurance companies, doctors, financial issues, stress, to name a few. I told an ER doctor a few weeks ago that everyone thinks chronic pain suffers are weak. Well its the exact opposite in my mind, if you weren’t strong you wouldn’t get up to face another day . And those that don’t make it, they aren’t weak in my eyes either. They just couldn’t fight the fight any more. This sounds wierd, but I lay in bed at night praying to win Powerball so that I could help pay for a pain patient to go see a doctor, help pay for someones meds they can’t afford, send a pain patient money to buy some extra food or catch up on their bills. There is so much more to chronic pain than pain .

  3. Kristine (Krissy) at 1:22 pm

    Sandra, thank you for such a nice comment and kind words. I hope things will get better for you. Who knew we’d be like this someday? It’s quite far from what our life plans were, isn’t it. You take care!

  4. Sandra Sinfield at 5:40 am

    thanks for sharing your story Krissy. I’m from the UK, also suffer with fibromyalgia and chronic lumbar spine arthritis. I recognise wholeheartedly the feelings of hoping the pain will go away tomorrow, and also rely on slow release morphine tablets, along with many others to prevent migraine, ibs and other complaints. I wish you all the best in your brave fight. We are not drug addicts, just desperate having tried everything else beforehand that doesn’t work. Sandra.

  5. Virginia Murphy at 11:01 am

    What an awesome description of the true challenges that those of us go thru in dealing with pain on a daily basis. I have severe arthritis and carpaltunnel in my hands, a hardware store in my elbow. Some days are worse than others depending on how cold it gets and I certainly don’t look forward to stronger drugs to deal with the pain. Sometimes I wonder and have come to the conclusion that we have been exposed to so many chemicals thru food, air and especially now water(live in Flint) that our cells can’t even absorb the nutrition that we need. I’ve lost 2 or my dogs and almost a 3rd one due to this crap with Flint water. The 3rd one was at death’s door with liver failure back in Mar. I lowered the protein in her merrick food and started her and me on Kare’s purple rice. She had her sixteenth birthday and is doing good! I have less pain in my joints and a better absorbtion rate and look and do feel better each day. I’m not proclaming this to be a cure all for all ailments but it surely does help.

  6. Michelle Ziemba at 6:58 pm

    Well said Krissy. I’m so sorry that you too are a chronic pain sufferer.

  7. Kristine (Krissy) at 3:09 pm

    Lana- thank you for your comment and telling your story. I believe you should “hang in there” as much as we all hate that phrase. I also believe that this opioid thing is going to resolve. Can you see another doctor, bring your MRI’s and records. I would give that a try. Many of us have had so many doctors over the years. I had one for years until he told me he “wanted to get out of the business of prescribing narcotics.” I know he was pressured by the clinic he worked for. I kept asking people, Who do you know living in pain.? Get doc names and make appointments. You will find one!

    Best of luck and I will keep you in my thoughts for sure.

    Krissy

  8. Lana Hill at 1:43 pm

    Dear Krissy, Thank you, so much for your story. I am in tears …for you and all of us who have suffered so long. You so perfectly put into words so much of what I have never been able to express. I used those exact words-” waking up to a nightmare that never ends”. It was through many prayers I was lead to a Dr. who understood- For years I tried everything to avoid opioid pain meds..For most my adult life I had a very active job I loved as a Wellness/Fitness Specialist at a local hospital. I enjoyed teaching aquatics, and massage therapy, I felt blessed to have so many wonderful friends, and a beautiful daughter. I personally refused any prescribed medication, and was the picture of health. Then slowly my pain became unbearable. Few friends understood, and my family spent a small fortune sending me to so many specialists. How could anything so painful not be fatal? I was terrified of opiod medication- it was my very last option. Then I finally met a well – known pain specialist that gave me back so much quality of life. I woke up in the morning with pain, but for the first time I felt the nightmare was over because I knew there would be some relief. I had joy back in my life. I was no longer living in fear of pain. I have been diagnosed with fibromyalsia, chronic migraines, cervical and lumbar spinal stenosis- due to degenerative disk disease, bone spurs. Now, after many years, my medication was just reduced. I found myself acting as though I was okay…I am used to pretending on the hard days. My only way to cope is denial. Then my pain Dr. could no longer treat me at all. Soon I will have NO meds. My PCP is afraid she will lose her license even though she said she knew I needed medication. I am facing a moral delimma- I don’t believe God wants anyone to end life- but now what? To suffer once again, with no end or hope of ever escaping the nightmare?… I pray for mercy because we all need a miracle.

  9. Barrie Tinker at 3:11 am

    You are so right in everything you said!! Drug abusers will still find a way to get their pills!! They should have a system for all these emergency room hoppers that go there only to get opid meds!! They can track people like ourselves who do not abuse the drugs and won’t be here long without them!!Why can’t they track us by our drug tests that our doctors give us to make sure we’re not doing illegal drugs? My doctor will not even consider giving me opioid medication even though he knows how much pain I’m in.And just because we ask for them doesn’t mean we’re going to abuse them! I have had opioid medication in the ER and that is how I know how good they work and know them by name.We pay to much for medicine to abuse it!! Fibromyalgia should have a second name,death!! Because that is where we all will finally be pain free!!

  10. Toni Denis at 9:36 am

    My husband has lupus and unrelated chronic pain from an injury. He’s dealt with all the issues mentioned–and did a lot of research on the drug issues. Most abusers get their meds from illegal sources on the internet and in Mexico–not through diversion from legitimate pain patients, yet they are treated like criminals. It’s a terrible, abusive medical system and needs to be reformed.

  11. Kristine (Krissy) at 8:06 am

    Barbara, thank you. I’d love to go before congress! Formerly, when I had my marketing communications agency, I gave speeches around the country and wrote and coached others. I don’t even think I’d need notes for this! You are very kind to write such compelling words. Take care!

    Krissy

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  13. Barbara W at 12:01 am

    I’m shaking so bad. Geeze
    Dr. Jeremy Cudos to you !

    Krissy, i would like to see you testify before congress. I will help u as much as my FIBRO/RSD lets me. I will carry u up to capital hill, cushion the chair u are sitting in fix your hair and make sure you have plenty of water for your lips to speak from your heart and your eyes to speak from your soul. I Thank everyone for ur comments. I hope they turn out to be more than words. If you need me just ask NPR for my email addy. God bless and keep you as pain free as the doctors can with one hand tied behind their backs.
    Shame on u Jane,Andrew,Mark,David. You don’t deserve the letters M.D behind your names. Shame on all of you and the CDC for trying to create addicts for your Phoenix House rehab centers across the country. We may be in pain but we’re not stupid

  14. Kristine (Krissy) at 7:43 pm

    Mary A. — Of course it will make a difference. If you can make a few notes by reading my and other’s stories and comments here on NPR, you’ll have it! If you want assistance, write to the editors here and tell them I give my consent for you to have my email address.

  15. Kristine (Krissy) at 7:39 pm

    Lisa: What state do you live in?

  16. Cynthia at 6:35 pm

    Wow, a great story, and fabulous comments. If there is any justice in this world, in this country, I pray that it finds us pain patients. The injustice of what’s happening is so so blatant. I hope it is laid bare and stopped before too long. May justice prevail.

  17. Lisa at 1:11 pm

    Krissy, I couldn’t have said it better myself. I was diagnosed with RSD/CRPS back in 2001 and things have gone down hill from there. The pain started in 1 kneeand it’s now throughout my whole body. I was just told by my pharmacy that they will no longer be carrying my pain meds which terrifies me because that’s the ONLY way I can be somewhat normal. I called all the pharmacies in my area and none of them will carry the medicine I am on, the ONLY 1 that helps me to get out of bed and all. I am panicking because I don’t know what I’m going to do, the only thing I do know is without my medicine to help me, I can’t live with the flare ups that have become out of control! ! I NEVER wish pain on anyone but just this once I wish these people had to go through what we do just for a week. I’m sure they would change their opinion then but unfortunately it’s going to be too late for a lot of us. They is a reason why RSD is known as the suicide disease.

  18. Kim Miller at 12:50 pm

    I can’t tell you how much I appreciate your story, Krissy. The only thing you left out is that we are being paid as part of some ” Opioid Lobby”, per Kolodny. Yes, we are sitting at home in pain, collecting our fortunes, so we can continue to buy generic medications. We have been degraded, vilified, and now, to top it off, we’re the paid spokespersons for pharmaceutical companies! You remember, Krissy, in between bouts of IBS and RLS, making that agreement with Purdue Pharma, right?

    CDC, PROP, Kolodny, DEA, please leave me and my friends alone and let us suffer with the tiny amounts of medications we’ve been allowed to still have. Those who have been completely denied any pain medications, let them have their lives back!

  19. Mary Asbury at 12:16 pm

    Very well said. I have tried to write the things that you have said but I cannot express myself the way that you have done.
    Do you really think it will make a difference? I really and truly hope it does. Thank you for saying what have been feeling

  20. Candice Hawkins at 12:01 pm

    Krissy’s nightmare is many of pain patients nightmare. I too wake up one eyelid at a time to determine my pain level for the day. Will I need to cancel an outting with my grandchild?
    I spent Christmas eve researching green burials since that is what I want. It was a relief to know there was one available in the woods by Austin where you can be just wrapped in a shroud and lowered into the ground. A year ago this was not my agenda. Before the government put the thumb to the medical world I was able to keep my pain within a decent range. But that is over with. I had to go to a new pain specialist who rerouted my pain care stating you can’t take this, that, any of this or that. I’m on a patch with minimal break through medicine and the rest is nerve pain medicine that gives me headache. He attempted Cymbalta and I said NO. I’ve just now got my depression under control and gotten out of bed. Within 2 months of this med regime I’m at a pain level of 6 on a 0-10 when 60 days ago I was a 3 .
    Of course I now realize it will get worse and with the med reduction and an increase in pain I was told I’d probably need a laminectomy. That’s strange, I knew the final lumbar disc was bulging but with the spinal cord stimulator and the previous medications I was walking 2 miles a day, caring for patients in their home and cooking for my family. I took the break thru meds at night, wore a patch, used my stimulator and had no problems during the day. Having leukemia makes me a surgical risk and having problems with recovery. Down time from surgery weakens me so much I end up bedridden. Why would I choose it. I bet someone like me, an RN with chronic pain from 3 discectomies, scoliosis, Sciatica and Fibromyalgia, would be a great candidate for the board that makes decisions on the outcome of opioids for pain management. Be happy to email me at my address but I won’t hold my breath since the group chosen has not included anyone in chronic pain.

  21. Danny Elliott at 11:55 am

    What an incredibly well-written description of the difficulties of the daily life (warts and all) of someone’s terrible suffering from severe, chronic pain. I only wish that I could’ve expressed myself nearly as well to the CDC. Krissy Anderson, as a fellow sufferer, I pray that God blesses you in ways that bring some joy into your life. Of course, I pray for healing, as I have done for almost 25 years for myself, but I have come to terms with the fact that many of us will not escape our pain until we leave this earth. Most of all, thank you for sharing your story.

  22. Cheryl suppnick at 11:49 am

    OMG You told my story so perfectly. I could never put it to word like you have. My Heart cryes for you because i know so well the hell you live. I am going to save your story because i may need it to share with others who just don’t get it. Thanks for sharing.
    I have had fibro for 34 years. It’s darn near broken me. GOD love you.

    Willie Nelson goes public with the fact he smokes pot at least twice daily. Ahhhhh he could be a Fibro. Huh?

  23. Lance at 11:36 am

    Thanks for sharing Krissy… I’m sure it takes great effort in research and time to help educate. Good for you and maybe, just maybe those who are doing more harm than good will come to their senses – although the more you bring to the forefront the more I think there are too many people who no matter how many facts are presented will never get it. And, continue to fight you and so many others in your situation. I stay hopeful however… God bless.

  24. Judie Bruno at 9:47 am

    Krissy every time I read your story, it breaks my heart to do so. Thanks for sharing this and for your comments.

  25. Kim at 9:09 am

    So well said….I have waited for the day I would wake up without pain for 9 years now.

  26. Jeremy Goodwin, MS, MD at 8:23 am

    I spent an hour writing an essay ( and then lost it) to accompany this posting decrying the beyond disgraceful and misguided attitude of primary care and ER clinicians, government agencies and others whose prejudices and inability to think critically is an embarrassment and a moral disgrace, as millions suffer because of totally inept and indefensible positions that have recently been taken to further ruin the lives of many, failing to better address the ever present problem of addiction per se with a well thought out plan and funding.

    Policies implemented now are causing much harm and panic, especially to those whose situations force them to use opioids to make them as functional as possible, despite their crippling and incurable pain and even if they don’t like the medication and conditions under which they are prescribed. They simply want their lives back! Yet NOTHING ELSE HAS BEEN FOUND TO WORK.

    Most of us do not like prescribing these drugs and most patients hate being tied to them. But off the scale pain is a more terrible Lord than almost anything else on this earth.

    Clinics now screen applicants for even general care by checking over the phone medicines already taken ( if phone lines are not encrypted why is that this is not a violation of privacy laws?) . If pain has already been treated and they are on pain medication, then suddenly the clinics are mysteriously “full”. Not so if no pain medications are declared. People are thus denied basic and specific care and many plans require that primary care clinicians are seen first. It is a moral disgrace.

    The statistics used by the government and by clinicians to justify untenable positions of medication regulation and persecution of even the specialists involved in the field is going to fail and waste billions of tax payors’ dollars yet again.

    Those who do not even understand the philosophy of science are hurting many. Denial of care via official and insurance based ‘guidelines’ interpreted and acted upon as laws ( which they are NOT, just as they are designed only for those yet to educate themselves on the topic of pain and headache management) is done this way to assuage any trace of guilt for their obvious moral failings and their breaking of the Hippocratic Oath of ” First, do no harm…”, etc. There is no other genuine reason. It is a farce. A lie. They do not care. They are not real healers, just trained and uneducated folk paid a lot of money to throw their weight around. And the professional lives of many who oppose such Draconian guidelines, lies and deceit have been ruined.

    Yes. We have done it again. Somehow in this culture, despite Willie Nelson’s song, too many have indeed grown up to be Cowboys and they are still fixated on killing the Indians. God bless America.