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

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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

On a Facebook support group for SCS one member asked about what someone considering getting a Spinal Cord Stimulator should know or think about before making a final decision. I wanted to share my response here. There’s no particular order to these thoughts…just off the top. 🙂
I certainly don’t and won’t discount the experiences of those who have had a hard time with SCS or had theirs removed. My journey hasn’t been pretty either, but I’m SO GLAD I ENDURED and now the SCS really is changing my life and I feel that it’s helping to decrease the number of flares and my susceptibility to them.

It doesn’t help with EVERY type of nerve pain I have. Many folks with CRPS who have an SCS find it helps decrease the burning pain. For me it doesn’t, but it does help with allodynia and some thermal hypersensitivity as well as helping me stand/walk longer with less pain. Some frequencies help with different types of pain I’ve found. I change my programs several times some days to address whatever pain is most prominent at that moment.

I had my first SCS implant on December 14th last year, but we didn’t get 3 of the 4 leads in the right place. We had tried something risky – using Boston Scientific’s 8-contact leads to stim all the way from mid-abdomen to toes. I wouldn’t recommend trying that trick again! Unfortunately, those leads just aren’t long enough and I lost stim in my legs below the knees, and my right arm didn’t work at all and caused nerve root irritation. So my revision was March ’14. Recovery hasn’t been easy, but for a number of reasons my second surgery was actually easier though more invasive.

My trial went very well in some ways and horribly awful in others. I was on the table for 2.5 hours and pretty miserable. All that poking and moving leads up/down left all my nerves inflamed. My leads moved as soon as I got off the table and I couldn’t use either of the arm leads during the trial, but my legs worked GREAT and for that alone I was hopeful.

It was a long 7 months of not lifting over 5lbs, not bending or twisting or reaching or or or…and I use a wheelchair so that was even more complicated. For most people the restrictions are 2-4 months. I’d just had two SCS surgeries back to back, so that tacked on another 4 months for me. If anyone is trying to decide on getting a permanent implant, I suggest setting up the house as best as possible BEFORE surgery so that the restrictions are easier to follow. Don’t feel bad if you can’t wipe yourself; that little amount of bending is soooo painful. It will get better as you heal. It’s also better to just follow the restrictions to a T to avoid a revision if possible. Nobody wants to go through that again.

There is real risk of spread due to the surgery. I was willing to accept the risk both times because I cannot take pain meds and most medications make me sick, very sick. All other treatments, including ketamine, were not options for me due to other medical conditions. If it’s possible to try ketamine and if you’ve looked into the risks of that treatment as thoroughly as the risks of SCS therapy, it might be best to go for the less invasive option first which seems to have a much lower risk of spreading the disease.

I also think anyone looking to get an implant should really try to consider the emotional side of it. It was harder than I’d anticipated. I was fine and am fine with having a foreign object in my body that I can feel and the scars don’t bother me that much. Perhaps I should call them battle wounds? But I wasn’t prepared for the frustration of healing and the restrictions and boredom. I like to do EVERYTHING for myself.

It can be hard too, even when things go well, accepting that the SCS isn’t a cure and won’t knock out pain entirely. It just doesn’t do that. Some types of my pain are relieved by 95% (touch allodynia) and others are barely changed. Surges of stim happen with changes in posture. The higher up the leads are placed, the narrower the space between the leads and nerves in the spinal cord, so the stimulation can be rather finnicky and at times just plain annoying when it changes.

Be prepared for the surgery to HURT. Every surgery is different. My first was a monster and the second was bad, but it took more out of me the first time even though I only had one incision on the first round and no scar tissue to battle and cut out. Pillows are your friends, not just in bed, but in the car and when sitting at home and just about everywhere else.

Patience with the SCS is helpful. It can get frustrating when reprogramming is necessary every 1-2 weeks for a while. Remember that your body is going through a lot of adjustment and try not to freak out when the stimulation changes in the first month or two. If you’re concerned, always contact your rep and/or doctor. The reps are really helpful when answering my questions. My programming sessions are STILL about 2 hours long, and that’s with a now-working SCS. It’s taken time for my reps and I to learn what really works and doesn’t work with my body and SCS, but as time goes on it gets better and better. The coverage gets more even, doesn’t jab me in certain spots.

Oh, speaking of that, don’t be afraid/embarrassed to tell your rep if the stim is going to “exciting places” because they’re used to hearing that and can pretty quickly get it out of there to prevent, well, you know.

Be prepared mentally to put everything you’ve got into your time in the Operating Room. Many decisions are made during the surgery which can’t easily be un-made afterwards. I wish I’d known that the first time. If it doesn’t feel EXACTLY RIGHT, don’t let anyone tell you they will fine-tune it with reprogramming. INSIST if at all possible that you want them to do it NOW, in the O.R. That’s our one shot. It’s a lot of pressure but worth it in the long-run, even when we have to be the bullies and advocate for ourselves while in pain. If you can feel way too much, ask for more local anesthetic. You may still feel it, but keep thinking of the relief you hope to have. (You may hurt more AFTER the surgery anyways, so hey, try to hold on while in the O.R. and they’re giving you calming drugs.)

I had them put my SCS in the side that I don’t normally sleep on as often which helped because for a long time I wasn’t able to sleep on my back or left side, only my right. Some also consider which side of their body has more severe CRPS as part of their decision in the placement of the battery unit. I had mine placed in my mid-back, below my last rib, because the CRPS starts in my lower back and I didn’t want anyone cutting nerves down there. I’m also grateful now that I didn’t have to have any extensions tunneled through my back! Less is more.

Not allowing battery to drain is helpful because it takes a lot of time to charge it back up, especially if it goes into “hibernation” mode. The heat from charging plus the pressure over the implant isn’t comfortable. When you’re first able to charge your SCS after surgery, just charge it for a few minutes at a time even if a few times a day (just after your pain meds kick in, preferably) rather than going for an hour or longer. Mine takes 3 hours to charge 1/3 full. Keep up with medication doses so you’re not trying to play catch-up with your post-op pain. When I travel, I take all my SCS stuff with me. Can’t risk a flare. I do find charging kind of annoying, but if I try to do something active to take my mind off it while I’m charging, that really helps. Think of how lucky most of us newbies to SCS are in that we don’t have to plug up to some charging pad connected to a wall each night!

About the emotional aspects, again…I saw a brochure from Boston Scientific about all the things these SCS folks could do after getting their SCS’s. Playing on the beach, gardening, woodworking, working in general!, camping, you name it. And I was like, “But why do they show people doing these things? I’m sure there are a select few who can get back to doing that kind of stuff. I have a friend who is back to working on her feet all day full-time! That’s great. But I don’t think it’s the norm. I feel sad that I don’t think I’ll ever be able to do these things again despite what I’ve been through to get my SCS.” I wasn’t mislead by my doctors or reps really. They didn’t give me that dumb literature either – I saw it on a table. Yet I think it’s a good idea to hold loosely our hopes for the return of FUNCTION we expect to get out of having an SCS. Pain reduction? YES! Improvement in function in my ADL’s? Yes. But I won’t be doing most of the things (especially IADL’s) I was (I think secretly, unwilling to admit to my self-conscious) hoping to do after I got my SCS and my pain levels decreased.

Blessings to anyone out there trying to make these decisions. I know it’s hard and there’s a lot to think through.