6 months already? So hard to believe. When chronic pain enters your life, time does not go by quickly. It drags on, minute by minute. Many days, all you can do while laying and holding back tears is to watch the clock tick by slowly. Just one more minute......I can do it..... Life revolves around the next medication and how soon can you take it? Muscle relaxants become your new best friend, in an attempt to keep your squawling nerves quieted and thereby gifting yourself a few minutes or hours of movement.
Walking through the house with the list of chores running through your head.......just what can I risk doing today? What wrong movement will it be this time that will put me in bed for days? Is there ANYthing I can do to help with the housework? Thankfully, the boys were older when this started and are now 20 and almost 17. If they had been little? I honestly don't know what I would have done.
This is a dermatome chart and shows where S1 nerve pain will be felt most often. If you have pain, check a dermatome chart to help you narrow down what nerve/disc level may be triggering the pain.
The sad reality became this - I was better off staying reclined fully, 23 hours a day, than to attempt to help with the laundry, cleaning, cooking. If I did any of that, I would end up in such a pain flair that I would have both Andy and I crying over what to do. There is just so much one man can take........watching his wife writhing in pain. Day after day after day.
Doctors try to help but they don't truly know the pain. They see that I'm not walking, I can't stand up, I can't stop crying, I've stopped breathing and have to be reminded to take a breath every now and then but each breath.....the pain.....I can't do it. The weirdest thing was I have a HUGE pain tolerance......which Andy and doctors could never believe. Honestly, an unbelievable pain tolerance, so when this pain took me down and out? Andy knew it had to be really really bad and he knew that wasn't good. Also, growing up I believed pain=weakness, so this was very hard for me emotionally as well.
So this was my life? This was OUR life? 22 years of wonderful marriage and now I will be living in a recliner for the rest of my life? It was very depressing.....but if I stayed reclined, when Andy came home, I could be smiling, my "fake" little smile that sometimes got past him, and he could have a wife who wasn't crying, who wasn't grimacing. Who could actually chat with him, watch shows with him, go to bed and cuddle with him. On days I did more than recline.......well, those were horrible days.
Just how many times could I see that look in his eyes, the look where he walked in, saw me writhing in pain knowing I did something I shouldn't have done, with good intentions he knew, but still. I might have just wiped down one counter, but if it made me lean, something my back could not do, that would be all it took. So that look from him, those tear-rimmed eyes, wishing he could take my pain even if just for a moment. That look that told me he loved me more than life itself and didn't need me trying to help with the house if this is what it caused to happen to me. The days he'd come to the bedroom on a quick trip to the bathroom but would find me bawling in bed, trying to hide it from everyone that I was past the point of coping. What had I done this time? Shifted in a chair? Who knew, I never knew. Pretty much anything I did could cause it to happen. I lived a life of fear, fearing every moment, every move of my body. But I was a go-getter, I never sat......how could this be? How could one woman be expected to endure this? Hyper was my middle name.....what was I to do with myself, lying down 23 hours a day?
Well, God had a plan. And that plan was to teach me patience. I truly believe this. I learned patience and more. I now have a different personality.....and I believe a better one. I'm calm, relaxed, I let things slide easily off my back. Sometimes Andy just looks at me ......smiling......trying to decide if he should poke me and make sure I'm really Cheri. He loved the hyper, crazy Cheri but I think he loves the calm Cheri more. I can still be hyper in my mind, with my words.....never at a loss for words.....but things don't get to me anymore. I've seen the other side and now I cherish what I do have. I know it can be gone in an instant. And I've gained an empathy for people who suffer with daily pain........something I never had a clue about.......and knowing there are people who have been given no hope of relief. I know how their days tick by, minute by minute.
After an EMG nerve test discovered what I already knew - massively permanently damaged S1 nerves......my medical care took a new turn. Now I was a candidate for a Spinal Cord Stimulator. This medical device is implanted in your mid-back (for lumbar problems) and upper buttock. Leads in your mid back send electrical signals in your spinal canal, blocking the searing pain signals from getting to your brain. Kind of like "closing the gate" and not allowing signals through. Since there was nothing that could be done to heal the nerves and knowing this horrid pain was 24/7 burning, searing, never-ending, mind-numbing and NOW the doctors believed me.........this SCS was a bright light to move towards.
After moving, having to change doctors and being put through many more tests, injections and prodding........I was finally ready for the SCS trial in November, 2008. Skipping over the procedure which can be a post for another day, the pain relief I felt for that 5 days made me cry - this time, tears of joy!! Andy and I spent so much time together that week.......we went to the mall for the first time in years, I walked in the neighborhood with him, I could walk around the house and do little things. It was AMAZING!!! I had no idea!! I kept asking him if he could feel the buzzing.......if he touched my legs........but he could not. He had such a smile during that time - his dreams come true, a wife who could smile again, and move without wanting to fall into a heap of tears. When the day came to remove the trial leads, I was again in tears, but this time, I was sad. I did not want to lose that pain relief!! The thought of going back to my regular life, the 24/7 burning pain.......but I had to. It was tough.
But a month or so later, on January 5th, 2009, I went in for my permanent SCS - spinal cord stimulator. That procedure went much better, but I did learn I have an anomaly in my back and that my nerves are not wired correctly. Meaning, the doc couldn't go by the anatomy chart on where I would feel what. Didn't surprise me, but I was thrilled to be in the hands of a master neurosurgeon, a man who trains physicians internationally on the placement of SCS's. He knew what he was doing. And I felt blessed. In the photo above, that pulse generator is what was surgically implanted in my upper right buttock, and that is what I put the remote control over when I want to change programs. I also must "charge" myself several times a week, for 2 hours at a time, with a charging belt. It is portable and I can do anything I want, live my life, while I recharge the pulse generator. I am not plugged into the wall - one of the new innovations that has come around. This technology has actually been around since the 1960's!
And so, it's been 6 months, six glorious months!! I do housework now, I do all the laundry myself (with grippers all over the house because I still can't bend, lift or twist), but I can walk.......I can do almost whatever I want. I can clean the kitchen, the bathroom counters, toilet (just can't do things like the bathtub and shower)......I can vacuum non-carpeted areas. I can go on walks with my loving hubby, we can hang out in the pool together for HOURS. I can go on car trips, something we love to do together. I can go on business trips with him...just almost everything has returned to normal.
Here is a post I wrote, with photos of my remote control and other items regarding my SCS.
He Always Wanted a Wife with a Remote Control
I will be going in on Wednesday for another tweaking of the programs in my back because now with all my increased activity, I'm suffering some intense back pain (rather than nerve pain) and I'm hoping she can tweak the nodes on the leads to give me some lower back relief.
All those months of prayer.........watching the clock tick by.......it worked. A most wonderful gift came into my life and I try to tell anyone I can about it, because I think we all know someone who suffers severe pain. And not too many people have ever heard of this option. It doesn't work for everyone, and often requires a psychological evaluation (usually required by insurance or the doctors) to make sure you aren't depressed and are mentally ready for something to work (truthfully, some people ARE their pain, and don't want it healed). And the procedures aren't a piece of cake. But by this time? I had redefined what I considered pain and I just wanted even a tiny piece of my life back. And I got it. And I won't stop being thankful for it.
This is the photo we took just after the SCS trial, and I call it my "pain-free eyes" photo. After 3+ long years of daily pain, I finally had some relief and I love this photo. Those that know me missed these eyes that used to sparkle........and now they sparkle again.
The good news:
I've lost 25+ lbs since implantation.
Have my life back, minus bending, lifting and twisting
The bad news:
Numbness will be here to stay, causing serious balance issues. Found out my feet are 2/3 numb and that explains a lot about why I fall so easily. This is from the permanent nerve damage, as well.
Ideally, the best route would to have been medically evaluated BEFORE nerve damage set in, but for me, that was only 5 months. During my first surgery, which was a laminectomy/discectomy (a very common surgery where they go in and remove the herniated disc by snipping it away - considered a minor procedure), the surgeon came out and told my husband he did not know how I was even walking!!!!!!!!(Remember, huge pain tolerance????) He has NEVER seen a herniation that bad. He told him my nerve was massively damaged from that herniation. Had I been "normal" with regular pain tolerance, I would have been to the doctor much sooner and not ended up with this result, most likely. But every time I went to the chiropractor, I felt better for a few days and thought it would heal, whatever it was. (The pain was in my buttock, not my back, so I had NO idea I had a back problem. Thought it was tight muscles, such as the piriformis muscle.)
Signed, a very enthusiastically thankful and blessed,
Another Charleston Charmer
27 minutes ago