Grateful for the Potter Family

Posted: October 4, 2017 in Uncategorized

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.

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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

Posted: June 4, 2017 in Uncategorized

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.

Fundraising

Posted: April 4, 2017 in Uncategorized

FUNDRAISER
for Sarah Bosse’s medical treatment

SWEET FROG
at Afton Ridge & Concord Mills locations (Charlotte, NC)

Saturday, April 8, 6-9pm

Please tell the cashier you’re participating in the fundraiser for
Crossway Community Church (not Sarah) and Sweet Frog will give 20% of the proceeds towards my medical care.

Fundraising is just not my cup of tea. I feel like I’m begging. Yet I also hate being stuck, being unable to work a job or even enjoy using the gifts that God has given me with which I can bless others. To do any of these things, I have to be healthier than I am now. Enter Sweet Frog Fundraiser!

In case this is your first time hearing about me, this is a brief list and explanation that Gina (my full-time caregiver and friend) wrote a few days ago, to help spread the word.

Sarah and I are pursuing help for medical testing and treatment for her which is not covered by Medicaid/Medicare.

Her challenges are complicated, covering many bodily systems, so standard medicine has not been able to address what requires a holistic approach. To give you an idea of some of the difficulties we are trying to address: heat intolerance due in part to anhydrosis (she doesn’t sweat), Complex Regional Pain Syndrome (CRPS, a chronic pain condition provoked by the trauma of double leg reconstructive surgeries performed years ago), Migraines, light and sound sensitivity, Dysautonomia (dysregulation in the autonomic nervous system resulting in constant elevated heart rate…), swallowing difficulty due to neurological deficits (making food choices extremely difficult), Histamine Intolerance (Genetics show an inherited deficiency in metabolizing histamine which creates pain, dysfunction, and more food restrictions), and the list goes on.

We are having some success with a few local practitioners, while some are and will be requiring travel, at least for a time. Alongside our wellness efforts, Sarah is continuing to pursue a career change and required schooling so she might work again, health permitting. Financial resources will help speed the process of pursuing treatment. If you have questions, I’m glad to answer. — Gina Potter

For those who don’t know my story, you can of course peruse my blog here. In short, I have been through every insurance-covered procedure for the medical conditions that I have. Very few of those treatments have been successful (mainly my Spinal Cord Stimulator implant and some biofeedback), and while I’m grateful for those that have helped, I still have a very long ways to go before I can participate more fully in life and in caring for myself more independently. As I’ve reached the end of what traditional Western medicine can do for me, and what my insurance would cover, I’ve had to reach into my pockets and give almost everything I have towards my own healthcare costs. For example, two weeks ago I used the remainder of my Pell Grant (FAFSA) money for school to pay for my bloodwork and tests (over $1,100) that Medicare and Medicaid would not cover. I had tried to buy my college books as cheaply as possible so that I could use the refund to get medical care. (I wanted to build a computer with the money instead, but I did the “adult” thing.)

Meanwhile, Gina is getting paid to be my full-time caregiver. I live with her now, in her house, with her family (since March of 2015, when I left all of my friends in Raleigh because I couldn’t safely live alone anymore). Under the Community Alternatives Program (CAP), Medicaid is willing to pay the expense for full-time care because otherwise I qualify for nursing home level of care in just that – a nursing home. (It’s cheaper for them to pay Gina to care for me than it is for them to pay for me to be institutionalized.)

Gina not only takes care of any physical need I have that I can’t manage myself, but in an act of amazing Christian love, she and her husband have chosen to use most of her pay to support the therapies and treatments that I need. Everyone is giving over 100% in this household.

The next steps in my treatment are held up, now, primarily by the need for more money than we can put together with Gina’s income and my $750 / month SSDI checks. So I AM asking for your help, if you’re able.

Would you like to donate online? Here’s my donation page! 

Two Years Later

Posted: September 28, 2016 in Uncategorized

It’s been over two years since I last posted on this blog. A lot has happened. I never imagined my life could have changed so significantly in just two years.

Four really big events summarize the last two years:

  • I moved in with a family I met in Charlotte, NC. The wife and mother of the family, Gina, wanted to help me be as independent as possible and saw that living alone in my apartment wasn’t a realistic long-term option. After months of getting to know Gina and her family, I agreed that moving in seemed the best for me. It also seemed to me that her kids enjoyed having me in their home and I was a good “match” for their family. I moved into their home in March of 2015.

  • Beginning in May of 2015 through October of 2015, I had the worst CRPS flare I’ve ever experienced. I was having increasing difficulty with my heat intolerance and flares from any amount of physical activity. I figured out that dunking my legs in a bucket of water helped return the pooled blood into circulation and calmed some of the burning pain. So I continued to dunk my legs when they got unbearably hot. Unfortunately, this turned into a nasty case of frostbite and six months of being entirely bedbound, not leaving my bed or bedroom except to go to the hospital by ambulance. I didn’t think I would stand, walk or even leave my bedroom ever again. Gina stayed with me through it all; nights of screaming agony, crying, and passing out from pain levels at 10/10. Dystonia curled my legs into unnatural positions. Gina’s family pulled together and her husband and kids cooked and took care of the grocery shopping and all of our needs while Gina stayed in the bedroom with me 24/7.

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    I began a slow and frustrating journey of recovery. For months I was unable to put my legs down into a seated position, much less put any weight into my legs. Unable to use my wheelchair, I developed the idea of using a “scooter board” like I’d done in elementary school to scoot myself across the floor in gym class. This gave me the first hint of mobility in about six months.

    I adapted my wheelchair to hold my legs up by using my sliding board and balancing my feet on the board. I needed help with everything. But by and by, I made progress and found ways to move around the house again.

    Within a year, I was able to walk again.

  • In January, my spiritual Grandmother, “Gran,” went to be with Jesus. I was able to say goodbye before the ventilator was turned off, and I played my flute for her to hear one last time before she heard the music of Heaven (which I’m sure was infinitely more beautiful). I attended the funeral in May of 2016 in Maine; I felt blessed to be able to go and honor the memory of my dear friend and the woman who lead me to a living relationship with Christ Jesus. At last, she was at peace, with a new body and most importantly, in the presence of her Savior. I’ve missed her beyond words.

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  • When I recovered well enough that I had some energy to spare, I began going through my things that had moved with me from my apartment into my new home in Charlotte. We’d not been able to finish the project of moving me in before my flare began. With Gina’s help, I went through every item I owned (probably a few times!) and discarded, donated or shared with others. It was a great way to start a new season of my life.

    After I’d disposed of everything I no longer wanted or needed, I had nothing left to do that didn’t involve needing money to do it. At that point, BOREDOM hit, and it hit hard. It’s possible that I’ve never been so bored in my life as I was for the first half of 2016. When I was flaring, I had no energy with which to be especially bored. But now it was real.

    In August of 2016 I began toying with the idea of going back to school in the Spring to get an Associate’s Degree in Information Technology (IT). I had no idea how I’d pay for it or how I could have accommodations to attend classes. Rather than sitting on my fanny, I decided to gather information and apply to two schools. My FAFSA was approved and I got full Pell Grant coverage of my school expenses. Vocational Rehabilitation began the process of helping me get the equipment I need to attend school. Both schools accepted my applications. The first bidder was even able to approve all of my accommodations through Disability Services and get me registered for classes before the beginning of the Fall semester! I prayed about it, sought counsel, and felt that the door was open for me to pursue a new career in IT.

    That’s where I am now. Gina takes me to school and helps me through my classes by helping me with the physical things that are too hard (like carrying my backpack and pushing my wheelchair). I also take classes online. This semester I’m a part-time student, but I’m hoping to go back to school full-time beginning next semester.

Now you see what I mean! I never had any plans to leave my apartment, but I’d always answered Mike’s question, “How long are you going to stay here?” with a simple answer, “As long as God wants me here.” It was an accurate answer. *Smile.* I miss Mike, but I think even he understands that if I weren’t living with Gina’s family, I’d have been put into a nursing home, and I might never have made it back out again.

Yet here I am, hoping to work a job again after several years of unemployment due to my physical disabilities. Thanks for sharing in my joy and praying me through.

Gutsy Girl