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.

    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.


  • 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

Sometimes you can learn a lot about a person by noting what they carry on their person. I thought you might find it interesting to know what items help me get through the day.

My purse and my backpack, which hangs off the back of my wheelchair, seem to contain mostly medical junk. BP wrist cuff, gloves and lube and wet wipes (I said I have slow motility, right? well…I’ll leave the rest to your imagination…and no, it’s really not all that exciting…except for when it is…), pen, notebook, WATER BOTTLE, salt capsules (make them myself), Larabar (only snack food, except some baby food, on my diet I found that doesn’t require a cooler – I make all other food from scratch).

Hmmm, now I have to go digging to remember. Let’s see…. Remote control to my Spinal Cord Stimulator (implant), serious medical ID (on wrist) with 12-card fold-out medical ID in my wallet listing you know…like…everything. Lidoderm patches, pillbox with its goodies, wallet, extra hand wipes, flashlight (I fall over in the dark), chap stick, phone and earbuds (ok, that’s fun), and those little Colgate toothbrush/toothpick with the ball of minty stuff inside thingies. Sometimes a book. That’s all! Fits in two bags.

What do you carry to help you manage your health day-to-day? And how about the guys? Do you use a “man bag”?

Gutsy Girl

Blessings This Year

Posted: August 5, 2014 in Uncategorized

It can be a lot easier for me to focus on what I don’t have instead of what I do have. It can be a lot easier for me to focus on my flops than on my progress. It can be easier to focus on the bad, the pain, the frustration opposed to the good times, the times I have pain in even one less are of my body, or on mindful contentment. It can be easier to live in self-pity.

But it’s not better.

Today I’m writing about what I do have because, as the rain falls, I need to remind myself.

In the past year quite a few things have happened that I never thought would come to pass, sometimes the fulfillment of needs I didn’t see coming.

I was blessed to be referred by Dr. Z to several awesome doctors who really looked at me as a person (Dr. N and Dr. F-M) and treated my case as holistically as they knew how to. After months of hardship, paperwork, waiting, I got my Spinal Cord Stimulator (SCS) – not once, but twice…well…yeah (revision surgery). 😛 There’s been so much progress made in understanding my diagnoses, their prognosis, and how to manage them together. Still working on that with my doctors who haven’t given up on me.

My friends and family pulled me through many very rough months. Without them, I would have no Spinal Cord Stimulator. Without their help with the cooking, my freezer would be pretty bare and my house would be dirty. Most of all, however, I know that without them I’d feel very alone. None of them share my diagnoses – for which I’m grateful – but they still love on me, even when I’m not very lovable and saying I don’t look so hot either is a grand understatement. Haha. Many of my friends (and my therapist, who is great) listen to me and really do want to know what’s happening in my life and in my mind and heart. Despite often being couped up at home, I’ve got the great support network that most people in my position could only dream of having.

I have some great CNA’s who have made recovery possible. They help me so much, every day. Showering, dressing, preparing meals, laundry, and last but not least (to someone who stays at home) SOCIALIZATION. 🙂 With a total of 7 months of movement restrictions, getting any of these things done myself would have worn me out so much that I wouldn’t have been able to do anything else for the rest of the day. They have been a Godsend.

I’m walking some. Much more than I could before my SCS and while I have been in CRPS/RSD flares. For a long while I’d thought I’d never walk again and I was almost ready to give up trying. Glad I didn’t and God sustained me! Being able to walk is nice.

It’s great to be able to drive again. This is a biggie! I wasn’t able to do that for most of the months in the last year due to various medical reasons. Now I drive short to moderate distances and that gives me a lot more freedom. Getting groceries and saying hi to the butcher, saying hello to my pharmacists or bank tellers or Walmart greeters is exciting! (Don’t rain on my parade! I get my kicks where I can.)

Speaking of driving, I have some friends who spent many hours and I have no idea how much money to get my car in better, safer, shape. My air conditioner works, my windows have tint to help the car stay cooler, my brakes are fixed, there isn’t a puddle in the floorboards of my car, the windows roll down (and up), and best of all, I have a REMOTE CAR STARTER which allows me to cool the car before getting in (helps prevent passing out and all those not-so-lovely thingies).

So many times God and friends has provided for my needs. Sometimes it was just funds coming in at the right time to help with mounting expenses, usually the medical kind not covered by insurance. Other times it was a particular item, even special clothing, I needed but couldn’t afford. One of my favorites was my cooling vest (a Dysautonomia necessity), nearly $200, which was provided by support from a family in my church. Oh, and new tires and rims and cushion parts for my wheelchair – also very necessary. A hospital bed and air mattress, then a gel mattress, a drop-arm commode I got for $25 at a thrift store last-minute, etc. These have helped me through my recovery. At other times it was a friend stopping by during one of those moments when I was stuck in an odd situation and about to get hurt without help! (Or, more likely, when I was about to do something I wasn’t supposed to be doing but I was being stubborn and was feeling determined to do it anyways…..not that I ever did that within 7 months….no no no…..)

I believe God has lead me in making some very difficult decisions about my health and relationships this year, and I’m grateful that He speaks to me through His Word and others and that He answers prayers. I haven’t been able to attend church all the time this year, but it’s made me more grateful for my church and what I miss when I can’t go.

Because I’ve spent a lot of time in bed, I’ve been able to read good books and think and write (more journaling than blogging). I wasn’t able to do as much of that while working. I’ve made some progress in coping with a “new normal” and I have hopes of moving forward in contentment.

Resourcefulness. I’m glad God gave me a talent in this department, because I’ve used it daily. Resourcefulness not just with finances but also with using what I already have to make something needed that I do not own or that doesn’t yet exist. In other words, Assistive Technology. Creativity and problem-solving. I don’t know how I would get through all this if God had not given me these talents, and I hope in the future to use these talents more to help others. Praying for opportunities.

Gratitude hasn’t always come easily, but it has come and I’m thankful that I can be grateful rather than being a grouch. That’s all by God’s grace. I’m glad that even when I’m depressed I now know (unlike past years) that there will eventually come a shaft of light and the clouds will lift. With that I have more hope.

While I’ve lived here for several years, I never forget that my apartment is a big blessing. It is handicap accessible with hard floors and a nice kitchen where I can cook all my foods (because I must make everything from scratch on my special diet). My office is separate from my bedroom which makes it easier for me to separate work from rest and have a work-from-home job that doesn’t intrude on other parts of my life (and vice versa).

I went swimming and I had an Un-Birthday party (hard to explain) with friends. I went to a contra dance and danced using my wheelchair. Just a few weeks ago I, with much help from my friends, went on a retreat. It was the first time I’ve traveled for anything non-medical in several years and incredibly refreshing on so many levels. I met this lady named Gina who is like my twin…in disguise. She’s so awesome and really understands me without me having to explain myself! A friend for life.

My Gran and Gramps made it through surgeries, amputation, the hardest of hard times…and they are still here to tell about it. I’m proud of them. They are serious paratroopers!

All that, and so much more (that I can’t remember right now) has happened in the last year.

Gutsy Girl

Thank you, Life In Slow Motion, for allowing me to Reblog your eloquent thoughts.

Well, I’ve had a Spinal Cord Stimulator (that actually works well) for four and a half months now. More like eight if you consider I got it in December, before my revision. I love my Boston Scientific Spectra SCS. Even more, I love the folks who have made getting my SCS possible – those who selflessly have cared for me during my months of restrictions and post-op. Without them, I wouldn’t have a Spinal Cord Stimulator. Without them, my pain would be entirely unmanaged.

Because my friends helped me get my SCS and helped me through the healing process, I was able to travel (with significant help) for three days to a women’s retreat. I’d not traveled for anything other than specialist appointments for several years and it was SO NICE to get out of my apartment and fellowship with others. I didn’t have a CRPS flare afterwards, but I did have a Dysautonomia flare which laid me low for a few days on bedrest. I recovered, however, and I’m back to my “new normal” self. God and my friends made all that possible. I owe my friends a great debt.

I could be wrong, but I feel like the SCS has helped prevent some major RSD/CRPS flare-ups in the last few months. I’ve had flares (the worst was around 46 days), but compared to how bad it could be, I’ve been spared. My pain levels aren’t zero, but I am able to get through the day with naps and intermittent rest between activities. I can walk MUCH better with my SCS and I can stand for longer (15 min) too with less pain. Probably the biggest change has been that I’m rarely afraid of people or things touching me when my SCS is on. When it’s off, that’s a different story altogether, but it’s on almost all day long. Before my SCS implant, I was terrified and crippled by the fear of someone or something touching me. I didn’t want to be out of my house or around ANYONE! Now I love and miss socializing most days.

I’m trying to find comfortable settings for my stimulator so I can keep it on at night and hopefully not wake up as frequently nor in so much pain in the morning because the CRPS has caught up with me while it was off. I think I’m learning and making more progress with this each night.

Some days the stimulation helps more and other days less even though I don’t feel any more or less likely to flare from one day to the next. Sometimes the stimulation moves a little even though my leads haven’t shifted a bit. I don’t know why. Last week I was getting stabbed in my hips and lower abdominal area. This week I still have some hip and coccyx coverage but it’s not stabbing and I’m able to turn the stimulation up without irritation. No idea why that happens, and I wasn’t reprogrammed last week either (though I think I was the week before).

SCS isn’t for everyone, and for some it’s a nightmare. I’m glad that despite a revision things are now working well and I can be more comfortable.

Gutsy Girl