My Story: A Hard Life to Live in Daily Pain

My Story: A Hard Life to Live in Daily Pain

I have lived with chronic pain for over 12 years.

I worked in healthcare and had a high pressure job that required me to spend hours on a computer analyzing data, building charts, putting together power point presentations, sending off data to all the reporting agencies, and writing reports. Everything had a strict deadline and I was the only one running the ship.

When I had my cervical fusion, I was told to be off the computer for a minimum of 8 weeks.  I ended up going back to work too soon and my first set of x-rays showed there was not a good fusion, but I had hope it would soon fuse completely.  I continued to work until my T1 and T2 vertebrae ruptured.

Nancy Lucky

Nancy Lucky

The fusion was just making the rest of my spine weaker and weaker, and my job was getting bigger and more demanding and I could feel something changing in my spine.  At first, I thought I was having a heart attack. It felt like an elephant was sitting on my chest.

I had never been so scared, so I called work and the HR director came to pick me up at home and bring me to the emergency room, where I was admitted for the first of two admissions that month to help with pain control. They had me on IV dilaudid and fentanyl patches. It did not take all the pain away.

Of course, the surgeon who did my fusion wanted to re-do it. I said no.

Then, about a year later, I had severe foot drop where I was dragging around the hospital. One of the back surgeons stopped me and said he could fix it. I was so desperate I let him cut on my lumbar 4-5. It did help my foot drop, but then I had extreme lower back pain and back spasms.

So they sent me to a pain doctor who worked very hard over the next 6 years to find a drug that would not make me drowsy so I could continue to work. Between getting epidurals, taking my pain meds, and physical therapy I could still manage to get my work done, I would spend 8-10 hours at the hospital and then I was set up to work from home so I often would rest and then work again for a few hours.

Then, of all things, I got a silly Morton’s neuroma on my big toe and boy it was so painful that I knew I had to remove it.  So at 52, I had that simple surgery that ended my life as I knew it.

Something happened — no one knows what or they won’t tell me — but I started getting this terrible pain in my surgery leg. It felt like it was in a vice being squeezed tighter and tighter until I would be sweating and screaming in pain. It was so awful I would bang my head on the wall.

Then the pain jumped to my other leg, so both my legs were doing the same thing. I walked like Frankenstein — very stiff legs and very slow, or I would fall.

It reminded me of when my 5-year old granddaughter had polyneuropathy Guillain-Barre syndrome.

So I went and had an electromyogram (EMG) test that was torture for the hour that I lay on a table, with a doctor putting these electrical impulses in different places. I just could feel the tears running down my face onto the steel table and dripping on the floor. I kept saying this really hurts, but he said nothing to me. Not one word of kindness.

He was not in my insurance plan, but my doctor said he was the best, so on top of being tortured I spent over a $1,000 out of my own pocket. I was not working and my Cobra was already $850 a month.

The year before I received the largest raise I had ever received and for once I felt the hard work and dedication paid off. My kids were raised and maybe I could do some things for myself. But that was not going to happen.

I was sent to UCSF Medical Center and went through a ton of more tests. I was told I had the spine of an 80-year old. I had degenerative disc disease, peripheral neuropathy, small fiber neuropathy, arthritis of the spine, a failed three level cervical fusion, two herniated thoracic discs and bone spurs.

I was a mess!

My original surgeon promised me that I would be back snow skiing that winter. He was a bit off, because that winter instead being in a ski chair lift I was in a wheel chair. It was so hard when my doctor ordered it and it was delivered to my house. I could not even look at it for a few days, I was in denial.

I still can’t walk more than 10 minutes and can’t stand on my feet. They burn and hurt and turn purple.

I don’t smoke, drink alcohol, or eat meat. I eat only organic food and I am not overweight. I have always been fit and loved to water and snow ski, and skate with my grand kids. Now I can’t even work.

Then because I had some money saved and a long term disability plan, Social Security put me on the bottom of the disability list. I needed insurance, but no one would give it to me.

I spent almost $50,000 in medical bills and prescriptions until I got approved. They had three or four doctors there and they all said, “Nancy, we are surprised that you managed to work as long as you did with everything that’s wrong with you.”

Well, when you have NO ONE to help you, you do whatever you can.

I still get many rude comments when I park in handicap or bring my service dog (who is a Chihuahua), because I don’t look to society like a disabled person should. I want to say spend a day with me, just one day, and then look in my eyes and tell me that.

After all these years, they finally found a medicine that helps me live with my pain. It is no longer a 10 and creeps up to an 8 at times on the pain scale, but I take the medicine and it brings it down.

But now the DEA doesn’t want pain patients to receive the medicines we need. I will never go back to those terrible nights of sweat, tears and screaming to God to let me die.

If not for our families and friends (I really don’t have any, except the support groups online), many of us would make a decision to end our lives while we can still make choices.

So please don’t judge me, you have no idea what I have gone through. I have worked my whole life and I loved my job, so I am not trying to live off the system. I am just trying to survive in a world that is cruel to people that are different.

I don’t fit anywhere anymore. My only true friends are my little dogs and my grand kids — who think I am pretty perfect just the way I am.

So bless you all, it is a hard life to live in daily pain. Yet I think of so many who have suffered so much more than I have. I pray that they are living in heaven in the finest places, where there are beautiful things that surround them, and they never have to feel pain. I hope those memories are gone.

12_7.jpgNancy Lucky lives in Antioch, California.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Nancy Lucky

There are 6 comments for this article
  1. lynn at 2:51 pm

    I have had chronic pain for the past five years. My Dr said its never going to change. H e gave me dilaudid 8mg. They worked ok for the firsr yr, but now its like taking an asprin. When I cant take the pain and go to the ER as my Dr told me to do, on my chart I was listed as a drug seeker. I told my Dr about that and he overwrote that in my records. Every now and then, I get a smart ass resident who still refuses to help. I hand him my cell phone and dial my Drs cell phone, home phone and hosp pager listed. I told him he would get my Dr quickly. He said the drs name sounded familiar, but he hadn’t been there lond so it could have been one of his teachers or something. I knew the story. My dr is chief of residents at the hosp! That was one surprised resident. His face was worth the pain!

  2. Susan at 2:20 pm

    “I will never go back to those terrible nights of sweat, tears and screaming to God to let me die.”

    That line alone made me feel what you feel. I have felt this in my own life. I applaud your willingness to try to continue to work and be a “normal” person. I feel the world really doesn’t have a place for patients like you or I. Sad because we can offer so much with the right treatment and medications in our lives.

    Thank you so much for sharing your story. 🙂 I am still working full time but my future is just exactly where your story leads. I am frightened. I have considered a pain management clinic appointment for the first time in the 15 years I have suffered with my condition. I am afraid to be judged and ridiculed. But I am too scared to stay in the type of pain that I have because we all, if truth be known, have asked the Lord to end the pain one way or another.

  3. Anna Laver at 12:40 am

    My heart goes out to you as you have suffered so much. I have been in chronic pain for nearly 20 years and it is the most debilitating thing in the world. I have had back surgery and have arthritis, scoliosis and osteoporosis in my spine. The trouble is if people cannot see it they think it doesn’t exist. Keep your pecker up girl and keep on trucking.

  4. Catherine Nichols Pogorzelski at 6:08 pm

    Please don’t add additional pain to your suffering with any MRI’s with contrast. No matter how your kidneys are functioning right ow, there are many people being diagnosed with Systemic Fibrosis, with docs ignoring that the gadolinium is the culprit. Ive been told, “Well yours is only 1:40 ana ” so it’s just the early stages of fibrosis-yet its also in my bowel, eprhaps caused by another drug called Creon given to kids with CF-to me for pancreatitis induced from Sjogren’s. I also have Lyme (the reason for all the MRI’s 10 in 13 years!) I am still shopping around for a doc to remove retained barium from bowel that was discovered at a colorectal surgery and ignored, 4 docs later no one will remove it, as they know its iatrogenic )dr caused!)
    I also have DDD and a hemangioma at T-11 after being bedridden 4+ years I had to rebuild my body-got it just to where I was able to exercise then BAM! the fibrosis kicked in. Lungs are starting to get involved. Traveling to docs alone ate through my savings, I do get SS disability and have great insurance, so there are no worries yet if I need medications, I have the insurance I really feel for those who don’t! what we really need is a medical system that recognizes certain conditions instead of us having to do all the work!

  5. Rhiannon at 3:45 pm

    I have a few things in common with her, with the exception that I have AIDS, so things are alot different yet so close.I was forced into Hospice care because no one will help me, including those HIV clinics that receive part C of the Ryan white Foundation funds.In Ky they just do not seem to care and it’s more work on the doctor if they have to prescribe Opiods to a patient .

  6. Amy at 2:21 pm

    Thank you for sharing your story. I am going on about 8 years of chronic pain and when I read your story I burst into tears. Yes I have been in so much pain I wanted God to take me to heaven. I still do but I have little ones to raise. I can relate to your experience with the electrodes and the dr being so cold. I woke up from a cervical fusion and not even dilaud would work. My nurse was so mean and made a student nurse who had no experience give me a catheter. The nurse thought I was a whiner. Please!! I think it is hard to understand unrelenting pain – the daily stuff – and when it gets to excruciating, unless you have lived it. Then you know and can look at a fellow sufferer and just know about the loneliness, the loss, the battles with Drs, insurance and on and on. You just know.