SCS Update – (3 Years, 10 Months and 28 Days)

Wow, I’ve had my Spinal Cord Stimulator (SCS) for nearly 4 years now! I’m so grateful for it and for all the people who helped me through multiple surgeries.

I hope this post will reach some people who are interested in getting a Spinal Cord Stimulator to help control their pain or who already have one but still have questions.

Why Did You Get Your SCS?
I got my SCS because I have Complex Regional Pain Syndrome (CRPS) and I tried every other available treatment, including nerve blocks, which weren’t sufficient to control my pain.

Did It Work For You?
Well, the first surgery was a flop. The leads weren’t put in quite the right place, and about three months later I had a revision surgery in 2014. In between the two surgeries I was a hurting puppy and I was getting painfully zapped by the SCS. Many hours of reprogramming later, the rep for Boston Scientific and my surgeon decided that a revision was the best option. I’m glad that I had the revision, but it was a really difficult decision due to the risks of surgery plus CRPS. However, I healed up much faster after the second surgery and was pleased with the relief I obtained from allodynia, which was much closer to the result I’d received during my SCS one-week trial. The SCS doesn’t help me much with burning pain, but I’ll tell more about that in a minute.

Does The SCS Take Away All Of Your Pain?
Nope. It never has, and it never will. I am still extremely limited in my activities, including walking and standing. I still have stabbing, shooting and aching pains. The pain that my SCS has helped eliminate the most is my extreme hypersensitivity to touch, especially light touch (allodynia).

I’ve Heard About High Frequency Programs. Have You Tried This Yet?
I asked my rep to create a high frequency program, and she did. With this program I actually can’t feel the stimulation, but I do finally get some relief from the burning pain. Unfortunately, I can’t run the lower and higher frequency programs at the same time with my current SCS model (the Spectra), but the rep told me that in the next 1 to 2 years, Boston Scientific will have a model available with a higher capacity and the ability to run low and high frequency programs simultaneously.

Do You Have Any Problems With Your SCS?
Not really. The only problems I have come inherent to being the “owner” of a Spinal Cord Stimulator in the first place. For example, sometimes it’s just hard to keep up with my SCS’s battery charging demands, especially when running a high frequency program which eats up a lot of juice. So I’ve ordered more sticky patches regularly from Boston Scientific rather than trying to wear the charging belt (which I find very uncomfortable), and I try to plan my charging time for when I will be standing because my charging disk overheats and shuts down when I charge while sitting or with too much clothing on over it. Another problem is that sometimes my SCS implant site gets sore. Again, I figure that’s kind of to be expected – I’ve got a “rock” in my back that I wasn’t born with! Getting zapped when laying down is something I’m used to, but it’s a little annoying. Other makes and models of SCS have a feature that automatically adjusts to the user’s change in position to avoid zapping. The final issue I’ve occasionally run into is the MRI issue. My SCS isn’t MRI compatible (though Medtronic makes a version that is). These are all small potatoes to me – I’m grateful for the pain relief!

Does It Matter Who Reprograms Your SCS?
Recently I had a reprogramming session with a rep from Boston Scientific who also has the Spectra SCS implant. It was a totally different experience being programmed by a rep who is also an SCS user. The whole process took less than half the time it normally does, and we were able to create several new programs and nix a few old ones that weren’t helping anymore. I recommend working with a new rep if your rep can’t help you. Don’t be afraid to ask. They want to help, and each rep has his/her own style.

Have questions about getting a SCS? Let me know!

Gutsy Girl

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Blog Theme Update

This blog was getting difficult to read and a bit too chaotic for my newer minimalist tastes, so I’ve streamlined its appearance. Hope you enjoy the update. I think having a simpler blog will encourage me to write more often.

Are there any topics you’d like to learn more about? It could be about dealing with chronic pain, relationships, Christianity, Spinal Cord Stimulators, etc. Send a comment and I’ll consider writing on a topic of your interest.

Gutsy Girl

Grateful for the Potter Family

I imagine it’s pretty hard for anyone to grasp how grateful I am to Gina, Steve and their kids for helping me every day. The amount of caregiving that my body requires is extensive, and without their help I would have to live in a nursing home (and I’m only 33).

Steve goes off to work early, as he’s a school teacher. That leaves Gina and I to create lots of trouble throughout the day.

I wake up like this every day…

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Every single day, without complaining, Gina makes me breakfast and most days she serves it to me while I’m still in bed. I’m not functional until I eat.
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Then I use a washcloth to clean up and I get dressed with the clothing I picked out the night before. Gina is always willing to help me as much as I need. Gina cleans up the kitchen while I make sure my backpack (which I use in place of a purse) has everything I need.

We often go out for a walk at the mall or we run errands like grocery shopping in the morning.

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I enjoy driving.

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Gina seems content to be my passenger.

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When we get home, it’s lunchtime! I so appreciate Gina’s willingness to cook for me.

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After lunch, I usually take a little time to goof off, get creative, or rest.

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If I feel up to it, I often study during this time.

I try to help Gina with her paperwork, or clean up at least one thing around the house. I really enjoy helping whenever I can.

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Some days I can’t do much more because I’m hurting too much, so I go back to bed for most of the rest of the day.

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Then there’s dinner. Steve comes home and Joey gets home around the same time, so they eat together and I either eat in my bedroom or in the kitchen with everyone else, depending on how I’m feeling. I enjoy the days when I can eat with my family because we talk and laugh and tell corny jokes.

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Towards the evening I usually get a jolt of energy that I don’t quite know what to do with.

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(This is usually the time of day when I cause the most trouble and I make messes that Gina kindly helps me clean up.)

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By nighttime, I’m pretty stiff and sore. Gina helps me get a shower to loosen up before bed.

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She runs the water over my face and back to help relieve my headaches.

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Then I rest for a while before bedtime, often reading a book or listening to a story, while Gina spends time with her family. (She has a large family.)

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That’s basically what my day looks like. That’s also what Gina’s day looks like. I’m grateful that Steve allows Gina and I to spend a lot of time together. We all get along well and it’s relaxing to be part of a family rather than living alone. I’m grateful for what I have.

Hope you enjoyed this post. Feel free to leave a comment.

Minimalist Me

In the last 2.5 years, I have parted with over 1/3 of my possessions.

And if you count back from March of 2014 until now, I’ve decreased what I own by one half!

When I moved to Charlotte, NC to live with a family about two and a half years ago, I had a U-Haul full of stuff that came with me. FULL, I tell you! Actually, the wonderful folks who packed up that truck realized, after the fact, that the washing machine was still in the closet and had to unpack a significant portion of the truck to make it fit.

Really, that 14 foot truck should have been able to handle all of my belongings with room to spare. It wasn’t the truck’s fault, however. I had too much stuff.

I’m not a hoarder nor have I ever been. Instead, I’ve mostly been too sick with this or that chronic illness over the years to be able to maintain my home the way I’ve wanted to. That said, I’ve always kept a decently clean and safe home with a healthy kitchen. Most folks found my place to be comfortable, if a bit eclectic. But decluttering wasn’t always an option due to back pain and mobility issues. When I was in the weeds, I’d ask friends for help.

I began the process of decreasing my possessions after my second SCS surgery in March of 2014. As I was healing and had four more months of weight and movement restrictions (no bending, reaching, twisting, or lifting more than 5 pounds), I got antsy in my apartment. I was no longer able to work a job, even from home, and I wasn’t feeling up to driving at the time either. So I was basically stuck at home, staring at my stuff, going stir crazy. That’s when it hit me that I could declutter, even if very slowly (less than 5 pounds at a time), and only keep the items that truly served me and that I wanted in my life.

Little did I know that those 2014-2015 thrift store drop-offs were only the beginning of a massive shift in my mentality towards physical belongings. 

Back then, I already had a handle on certain priorities and values, such as valuing relationships above physical items. But I didn’t yet understand how living with as many items as I had was making cleaning and self-care more difficult than it needed to be.

It was embarrassing moving all my junk into the Potter’s home. The Potter’s have quite little. In fact, there was not a single picture hanging on any wall of their home when I moved in, and the only decorations I found were curtains…if those even count as decorations. So you can imagine how my excess of stuff stood out like a sore thumb! (And required utilizing several other housemates’ closets to store.) Now, nobody ever complained about my stuff, but I felt self-conscious.

I was not a maximalist; I was just a “saving-for-a-rainy-day-ist,” and most of my belongings reflected that. Because of my limited income, I knew that if items broke, I couldn’t just go out and easily replace them. So redundancy had become a way of life to save money and reduce risk.

This post from The Art of Manliness is too good not to share with you, and I think it sums up my understanding of minimalism. Here’s a snippet:

“Basically, minimalism is largely something only well-off people can afford to pursue, because their wealth provides a cushion of safety. If they get rid of something, and then need it later, they’ll just buy it again. They don’t need to carry much else besides a wallet when they’re out and about; if they need something, they’ll just buy it on the fly. No sweat. If you’re not so well-off, however, having duplicates of your possessions can be necessary, even if such back-ups ruin the aesthetics of owning just 100 possessions.” – The Art of Manliness

I myself tried to create a type of safety net, even if it was a misguided one that rarely helped me when the chips were down (it’s not like I kept an extra alternator for my car laying around somewhere in my apartment).

As I adjusted to life as a member of a large family, I began to feel more secure. I never take the Potter’s generosity for granted, and they know that. When things have come up, they have helped me. I no longer feel like I need to keep a spare alternator in my bedroom (not that I ever had one) or keep two mattresses for my bed (yes, I did have two mattresses before). Life is better when you feel cared-for and loved every day, and that security has helped me part with the extra stuff.

Enter the famous book by Marie Kondo, The Life-Changing Magic of Tidying Up. I read it from cover to cover and watched Youtube to see people practicing this “KonMari” method of decluttering their lives. It looked hokey. You hold one of your items in your hands. Sniff it, pet it, talk to it (seriously), whatever you need to do. And then you decide if the item “sparks joy” or not. If not, you thank it for its service to you and release it to donation or recycle/trash. Perhaps part of the reason this method sounded so cheesy to me was because I didn’t have very many possessions that I could have said “sparked joy” when I held them to begin with. Some even sparked sadness!

With some practice (which, for me, involved whispering to my belongings so I didn’t scare my housemates), I am now pretty fast at determining “joy” or “no joy” for various items. It has become something of a running joke between Gina and I, as I pick up something that isn’t working for me and say, very dramatically, “No!! Joy!!” with this pained expression. *Laughing.*

Reading about the minimalist lifestyle intrigued me, and I knew that by parting with the things I didn’t love having in my life, I’d also be serving the Potter family and Gina in particular, who is a practicing minimalist without adopting the label.

Gina and I began going through my belongings and her own, combining what we owned, and parting with items that were basically worn out beyond recognition. I parted ways with old, broken furniture, and purchased some new items from Ikea that felt “right” in helping me to express my personality through my surroundings.

Finally, there was nothing like binge watching Youtube videos about hoarders whose lives are wrecked by the stuff they owned to get me into a cleaning mood! So I regularly watched videos about hoarding and minimalism, and sometimes even about decorating, to help me decide what my goals were.

In the last 2.5 years, I have parted with over 1/3 of my possessions. And if you count back from March of 2014 until now, I’ve decreased what I own by one half!

For me, the point isn’t to just “get rid of stuff” so that I only have, say, 200 items. Rather, it’s to keep what I need and want, simplify the amount of maintenance required to take good care of my belongings, and focus on the God and people in my life who really matter, while caring for myself as healthfully as possible.

As a massive bonus, I can actually enjoy shopping now because I don’t feel the tug to purchase anything. I have adopted the practice of taking a picture of an item that sparks joy while I’m in the store and leaving the item there, grateful for the spark I experienced in that moment. A weight that I never knew was there before has lifted off my shoulders. I’m an expert window shopper! 😀 This is especially helpful because Gina and I regularly walk the mall near our home, and even while doing so I rarely feel any urges to purchase anything. So mall walking really can be an inexpensive means of physical exercise for me, where I think for most people it could quickly turn expensive if they walked the mall daily or every other day.

The freedom from infatuation with stuff is relaxing and enjoyable.

Hope you enjoyed this post. If so, leave a friendly comment. Cheers!

Thanks For Giving

The fundraiser was a success. Altogether, adding what was donated through Sweet Frog and what was given online and in cash for my medical needs, $550 was collected. THANK YOU!

This fundraiser paid for one visit to my doctor in Chapel Hill about two weeks ago. (Yup, he’s ridiculously expensive, charging around $280 per visit with him, not including the cost of supplements.)

I’ll have to decide whether to start more fundraisers. I’m honestly too tired right now to consider it. I’d much rather work for the money. My dream job for this season of my life would be to work for Firefold, a company that repairs computers. Please pray that God will open the door for me to work part-time while I’m in school full-time. I do need money to pursue further help for my medical problems.

Here’s an update on my health and needs.

For over a year now, I’ve been hypersensitive to sounds (especially higher pitched sounds). I don’t enjoy playing my flute or piccolo anymore because they are high-pitched, my shoulders hurt when I play, and my vagus nerve isn’t working well so it’s hard to breathe deeply enough to play well. Worse, however, is the impact this has had on my daily life and relationships. I don’t eat with my Potter family anymore because the sounds of the utensils on the plates is unbearable, even with noise cancelling headphones. I wear noise cancelling headphones most of the day because four of Gina’s five kids are home for the summer. The noise of the laminate floorboards cracking as people walk across the floor anywhere in the house is also hard to tolerate. I’m barricading myself in my bedroom. I love the people I live with; I just don’t love their noises. The ice machine in the refrigerator, the squealing of the van’s belt, the sound of running water in the kitchen or bathroom, the squeak of the back door as it opens, they way people pronounce their “S’s,” the dribbling of a basketball outside on the pavement, the squeal of the school bus brakes (6 times per day because there are three busses in my neighborhood) and did I mention the glass dishes and silverware?

All of these “normal living sounds” cause discomfort. It takes all of my will power not to lash out at people who make such noises, even though my rational brain tells me that they are being normal humans and it’s ME who is messed up. So, instead of risking blowing up at anyone, I retreat to my bedroom, where I still feel like everything is simply too loud.

Just a few days ago I saw an audiologist because I felt like I couldn’t manage this hearing hypersensitivity anymore without help. Melissa Karp was able to run me through several hearing tests and quickly identify that I have hyperacusis. She charged me a reasonable amount for the evaluation and knew what we need to do to help my brain repair itself.

You see, hyperacusis is an auditory processing problem in the brain. My ears themselves aren’t damaged, nor are they any more prone to damage than yours are. However, my brain has decided that to crank the volume up to 12, and therefore I perceive the sounds I hear as extremely loud. My audiologist placed me in the “severe” category. At least I’m not “extreme” yet – the last level on the chart.

She recommended that I begin Tinnitus Retraining Therapy (TRT). It’s not just effective for tinnitus sufferers; it’s also effective for hyperacusis. It involves wearing sound generators that look very much like hearing aids and cost about as much – normally between $1,500 to $3,000 PER EAR (and like most people, I have two ears). The company that manufactures the sound generators understood my income dilemma and has cut the cost significantly, and Vocational Rehabilitation may be able to help with the cost as well, but I’m waiting for a final verdict on all of that.

Meanwhile, I’m not supposed to use my noise cancelling headphones at home (though I still do because it’s just too loud and I’m battling migraines from sounds around me). I am participating in a sound enrichment protocol and listening to white noise all night in an effort to comply with the instructions I was given so that this condition doesn’t get worse.

TRT takes a while to work. Most people don’t seem to experience improvement for at least 6 months to a year after they start TRT. There’s no pill or quick fix to this one. The cause of the hyperacusis, my audiologist suspects, is a brain that is “on fire.” Just as my other senses are hypersensitive – to touch, light, texture – so now is my hearing.

I need a cure. I want to work a job. I want to do good to those around me. Please keep praying for me.