This is a very personal topic and not too many people know my true story with pain medication. When I say that my 1st back surgery was in 1988, one can assume that I’ve run the gamut with pain medication.
Back in the day, they used Demerol. That was my favorite because it didn’t make me sick and it worked. Apparently, too many people misused and/or died while taking it. I was shocked in 2006 when I had my 1st neck surgery and I was told they no longer use Demerol.
Morphine, Fentanyl, and Dialodid, was the choice for immediate pain relief after surgery.
Morphine makes my head and face itch so then I would need Benydryl to combat that side effect. It also gives me a headache and makes me nauseous. Fentynal and Dialadid do not have anywhere near the more lasting effect that Demerol does (for me).
While in the hospital, they assigned a pain mgmt team to my case.
In between surgeries (7 surgeries alternating neck and lumbar) I was seen by pain mgmt dr’s. Their motus operendi was to do epidural injections, rhizotomy injections (burn and disable the nerve root at the facet end),facet joint blocks, and sacrum injections. I didn’t mind doing these because I chose twilight sedation which prevented me from feeling most of what they were doing. Not to mention, twilight was the real pain reliever if only for a few minutes.
There were always those few macho people across the hall from me, sitting upright in a chair getting their epidurals without twilight. Why would they waste a perfect opportunity to get high?
Along with the injections, I had a smorgasboard of prescribed pain meds. A-Z I had it. Back in the earlier days, I would wake up and immediately go to THE cupboard and decide what I wanted to feel that day? That was the beginning of the end for me . Rarely did I wait and see if I even needed the pills. After sometime went by, I eventually stopped using the pain meds.
Then in 2006 the string of 7 surgeries began. I felt like I lived at Dr offices. Then it turned into never missing that monthly pain mgmt appointment. I would cancel a lot of spots. But never that one. Not because I liked the feeling. I just didn’t know another way to live. Eventually the pain meds stopped working. The dose, variety, etc. began to increase and therefore, I would “feel” relief. Needless to say, I reached a point where I had tried everything. Norco, Vicodin, fentanyl patches, Morphine, Percocet, Lortab, Nuerotin, etc…
I moved onto considering a pain pump. I met and was approved by the psychologist, I took the classes, had the testing, and even had a date set to do this. Something inside me resisted this. I didn’t want to live on a pump because what if I didn’t get the medicine timely for some reason? I would get sick. I didn’t want to live like that.
My memory was shot, my relationships with my children had changed, and my work life suffered to the point where I had to step down. I wasn’t a bad person. I didn’t mean to hurt anyone or forget important dates.
I was a functioning patient dependent on meds and decided to check myself into a local rehab center. I stayed there for 28 days and they put me on 24 mg of Suboxone. I felt no pain relief and as a matter of fact, I felt nothing at all. The other patients were on 2, 4, 8 mg of Suboxone and didn’t understand how I was able to take 24mg?
I was frustrated that I left a treatment center still on a medication. What I didn’t know is that Suboxone has a negative connotation from other Dr’s and society as a whole. It’s a drug used to withdrawal from heroine and other types of opioids. I was using it as pain relief and felt very uncomfortable explaining this. Because it was not working as a pain reliever I decided to detox myself off of it and see exactly what amount of pain I was really in. I heard that once I got down to the 2 mg amount and stopped completely that that was the hardest part. Some people I knew claimed that they were unable to quit for years. God was helping me and my desire to be pill free was such that I was off the stuff in 2 months.
Today I find it interesting to hear the drastic difference in how family and friends describe my personality at the end. Some said I was horrible. My personality and moods were unpredictable. Others said they didn’t know I was on heavy meds. Who do I believe? How do I forgive myself? Where do I go from here? What about the pain, because now that I’ve been off meds for awhile I knew that the pain was real. Now what?
Narcotics ruined my life, Suboxone doesn’t work and has a horrible connotation, and physical therapy wasn’t cutting it, injections were a waste of time and money and meanwhile back at the ranch, my marriage was suffering and apparently I has said something to a family member that I don’t know what I said but it caused years of resentment. One thing is for sure, anyone who knows me knows the last thing I would want to do is offend a family member. I gained a lot of weight (over 20 lbs) worrying about this and lost sleep. That was all from 2006-2013. 2013 is where everything came to a head. Luckily, most of my family still supported me.
Fast forward 4 years, 2017, and I’ve now attended a chronic pain program which deserves it’s own blog page and I’ve done reasonably well without any meds at all. Motrin not included! I’m taking too much of that so they’ve limited me due to elevated kidney and liver numbers. Crap.
It is now May, 2017. I could tell over the past year that things were changing in my thoracic area. It was hard to believe so I did my best once again to not participate. I now have 2 grandchildren who I love more than life itself and another one on the way. Medication is not an option.
Because I know to stay clear of meds. I began to pray and meditate. Asking God for relief and support. I also ask for guidance on a daily basis. I admitted to him that I was becoming concerned with my back again but didn’t know who to talk to? I don’t have an existing relationships with doctors regarding my back and the thought of starting this over again was more than I could stand. Then something happened to remove any/all hesitations that I had on looking for help.
Back in December, 2016 my kids asked me to babysit in June so they could attend a wedding. I think we all knew this was a bad idea but they respect that I love spending time with them plus they needed someone who was able to spend the night that they could trust. As frustrated as my husband becomes when I commit to babysitting, who knew this was important for me to follow thru and he left me alone. He actually purchased the plane tickets. Well as time went on, come April 2017 I knew there was no way that I could safely babysit. I definitely would not be able to lift my granddaughter who is not yet walking and that right there made it a game changer. I had to cancel and call them to let them know but how and when? It needed to be done right away but I just didn’t want to accept that change has occurred and I was about to confirm that they can no longer count on me. Call it selfish, but it bothers me that they have 2 other sets of parents that are healthy and able to do whatever is asked. No longer the case here. The conversation occurred and it wasn’t the greatest talk. I hung feeling deflated, broken, and a failure. I hadn’t even started the true process of finding out what was wrong but for me the worst thing happened. I had to disappoint and change the plans. Story of my life. No matter how many friends, family, doctors, etc. tried to reason with me that was my bottom.
I then made a few phone calls to friends who I trust in the medical field and within days, I had the referral to Dr. Soo. I did make a trip to the ER where pills were offered and a few other dr’s for opinions where pills were offered. I declined but this time I felt so bad about everything that I almost took them up on it. Yes, give me all you got. Not because of the pain but because I don’t want to feel anymore.
I am not limited to working a very few hours per week which effects my income, I’m back in this bed which I don’t need to say much about that, and my husband is a saint but how long can he deal coming home to this? I honestly reached a point where I thought, it may be better for me not to be here. My kids all have beautiful lives with great kids, they have the support of the parents they like, and my husband can move on without a broken, broke, and fat women who needs more major surgery. Hey, I’m just being honest. This is how I felt.
Then my daughter posted something on fb that was so kind and caring that it stopped me in my tracks. She had always told me that for her, it was so hard to watch her mom go from being so involved and active in her life to laying in a hospital bed. She admitted that she was angry and didn’t know what to do with that emotion. All of a sudden, after she found out about this next surgery she posted a call to prayer and good thoughts. It was a detailed post that told me she did understand what has been happening. The one thing I noticed is that there was not word mentioned of pain medication. I don’t think it even occurs her to anymore. She remembers how I was, but today she has let it go and respects me. My son is still working on it. I’m not sure how to help him understand the big picture. He doesn’t live close by so he misses a lot of the day in day out drama of having a bad back. This is a good thing but puts him at a disadvantage to understand. Can you tell how important my families support is to me. My parents are super hero parents. Especially my mother. Each and every surgery, she flies in and stays here for months helping my husband with the house and me. I truly could not have survived this without her. She prays with me, makes me laugh, and nurses me back to health.
So here I am facing the biggest surgeries of all. Actually I’ve committed to 4 surgeries to make it all right and I’m aware as are my doctors that I have a problem with pain medication. I will be prescribed and given what I need but we are a team now. We won’t let happen to me this time what happened last time.