The Things I Carry

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


4 Month SCS Update

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

Trying To Decide Whether To Get A Spinal Cord Stimulator (SCS)?

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.

Thanksgiving 2013

In the pre- and post-op aftermath, I’ve fallen behind on blogging.  But I have a few posts that are just a sentence or two away from publishing.  So, though I’m late, here is my Thanksgiving 2013 post.  I figure it’s never too late to be thankful!!  In my world, every day should be Thanksgiving and Christmas!


Thanksgiving has become my favorite holiday.  I have so very much to thank God for in my life and in the life of my family and church family. I love being grateful and considering the goodness and greatness of my God.

I am looking forward to Christmas not because I will feel like doing traditional Christmas activities after surgery (I won’t), but because it is one more amazing opportunity to remind myself of who Christ is and what He has done for me; who the Father is and how he ordained my salvation; who the Holy Spirit is and how He was sent to achieve in me the outworkings of my salvation and the assurance thereof.  What of higher value exists upon which I may rest my weary thoughts?

I am grateful that, while the answers have been hard to hear, I now know what is happening in my body to cause the pain and weakness. I now know what can and cannot be done medically. I’m also grateful to have access to wonderful doctors.

I’m especially thankful this Thanksgiving for God preserving the lives of my Gran and Gramps this past year so that, for this time, we can continue to share our lives as we grow in Christ and continue to acknowledge and enjoy “the goodness of God in the land of the living”.  Though we see dimly, His goodness is so great that it is still worth living in this sin-ridden world.  His goodness surpasses all sin and death and sickness and sorrow.  We have so much to be thankful for!
God has blessed me with spiritual family both now and eternally.  He is kind and gracious.  He does not treat me as I deserve, but sees me through the righteousness of His blessed Son.  Who am I that the Lord should love me?  But in Christ, my Father sees me not as I see myself, but as complete in Him forevermore, my sins cast as far as the east is from the west.  Praise Him!
God has given this weak and tired one strength to endure and the desire for His name to be high and lifted up, for my weakness to be a vehicle of His power and might, a testimony to all who see so that they might proclaim, “Great is our God and worthy of all praise!”  May He use me in His service, however and wherever that may be.
I’m grateful for my upcoming surgery, for the opportunity to get a Spinal Cord Stimulator to help with my pain from CRPS/RSD.

I am sooo thankful. Though I can only stand for a total of 5-10 min per day, God has MIRACULOUSLY been preserving a healthy portion of my muscle strength in both legs. There is no logical/medical explanation for the strength I do still have. I’ve taken it as a gift He has given during this season when, due to pain, I am unable to stand more than that or exercise much at all. I often feel guilty for not trying to stand/walk more often, not wanting to deal with more pain. And I just feel like God has been saying to me, “Daughter, I’ve got this. Focus on ME, and I will take care of all those things you cannot do. I’m giving you rest and peace in the storm. Its not time for me to calm all the winds and waves, but I say to your heart, “Be Still!”” I feel there are additional reasons He has given strength and protected my muscles, and I hope I get to see those even more fully. But in any case, I am encouraged greatly to see His mighty hand in one very specific part of my life.

International CRPS Support

nasa earth

Sharing our experiences, our ups and downs, the lessons we’ve learned through the challenges we’ve endured…sharing our lives with likeminded folks and with those who are different from us is something all people from all nationalities find important.  It’s nice to know that we’re not alone.

Especially when you have a “rare” disease like CRPS.  The condition itself, by its very nature, is ISOLATING.  “Don’t touch me!” and “I’m sorry, I can’t do that today,” are its refrains.  Stuck inside our homes and stuck inside our bodies that aren’t really ours, stuck in a depressing tangle of thoughts and emotions made more complex by the limbic system dysfunction caused by CRPS/RSD, which seems to attack EVERY part of who we are.  Being stuck is scary and disorienting.

It becomes even more disorienting when friends, family, and medical professionals tell you the pain isn’t real and “If you would just get out more, you’d feel better”.  It’s disorienting to experience pain with touches that were once comforting.  It’s disorienting to find the very things you loved in life most – music, the breeze, the rain, wearing cute shoes and clothes that swish, driving, walking in the snow…or walking at all – now cause pain that is itself impossible to describe to anyone who doesn’t experience it without using terms that are both graphic and gory and once again…isolating.

But hear me out here.  Because I am not trying to paint a picture of hopelessness for those who have CRPS.  In fact, the reason I’ve pointed out the barriers to sharing our lives with others due to our condition of CRPS/RSD is because it makes the ability to do so that much more appreciable.  

People who have rare conditions like CRPS are some of the most creative and courageous problem-solvers I’ve ever met.  They are willing to use any and all resources to survive.  Surviving such an all-encompassing condition healthfully, however, requires more creativity and knowledge than any one person could posses.  It come as no surprise that treating a patient with CRPS/RSD would require a FULL TEAM of doctors rather than just one or two.  In the patient’s world, successful treatment requires connecting with others.  Such interactions are vital!

Other people who have similar experiences (CRPS/RSD) are able to:

  • Understand
  • Give emotional and practical support
  • Validate each other’s experiences
  • Add ideas to the think tank to help problem-solve and make each other’s lives easier
  • Applaud the “small” victories that others without similar challenges wouldn’t necessarily see as significant
  • Receive support to help those providing support feel that they are needed and valuable, an asset

Those who have different experiences are able to:

  • Provide a different point of view that allows CRPS/RSD-er’s to look at a situation perhaps more objectively or to see ourselves through someone else’s glasses
  • Add fresh ideas to the think tank that haven’t been explored before
  • Respond courteously to others’ opinions (even when contrary) so that both parties are able to further appreciate diversity’s ability to cohabitate with respect

The lists above are far from exhaustive, but you get the idea – there are many positives to sharing with others.  I’d be remiss to tell you that there aren’t negatives as well.  Surely they are, as we’re all human and we make mistakes.  Sometimes people will say things we feel are hurtful…sometimes we’ll say something out of frustration or it will be misinterpreted by the recipient…sometimes people slip up and expose details of their lives or someone else’s life that they wish they had not exposed so openly…some interactions leave us feeling a bit more drained than we’d anticipated.  Such is life, right?

This is why, in my pursuit of mutual support in the international CRPS community, I’ve sought QUALITY interactions over quantity interactions.  Some may choose quantity over quality – who am I to judge?  Personally, I’d rather attend a support group that has a positive vibe and energy as opposed to one that spends its time stewing in complaints and negativity, whether that “support” group be local or virtual.

Through the blessings of modern technology, I HAVE OPTIONS!  😀  ADHDer’s love options!  Not only do I have many options to join virtual CRPS support groups and chat rooms, but I have the option to participate in international support groups as well.  Folks in other countries have often received different treatments for their CRPS/RSD than I have, and they may be privy to information and ideas to which I’ve never been exposed.  They may have cultural views I’d not previously considered.

Skype and cell phones make speaking with others an affordable option, even internationally.  Seeing someone face-to-face who walks the same paths in life is an amazing experience, frequently leading to a special bond.  Technology also allows us to find others who live in our local area and who have this condition.  How cool is that?!  😀  I’ve received LIFE-CHANGING information and doctor recommendations (as well as life-saving warnings against certain doctors – thank you!) from such interactions with people who live locally and who have this condition.  Technology allows caregivers and loved ones to “enter into our world” for a look at the inside, how we feel and think, ideas about how they can better support our fight.  It provides them with much-needed support and opportunities to network with other caregivers, to express their personal concerns and share coping strategies.  Reading others’ blogs is very encouraging for me.  It gives me the chance to realize that the depth of emotions and challenges I’m facing are not uncommon.  Blogs help me develop realistic expectations and inform me about important treatments like Spinal Cord Stimulation from the patient’s point of view (rather than just the doctor’s!).

This Thanksgiving, I am very grateful for such interactions, both with people who share similar situations and with those who have varying perspectives and situations.  As I engage others and myself in these interactions, I’m rewarded by my brain buzzing with new ideas and concepts, getting a breath of fresh energy to conquer challenges or at least to try again tomorrow, and enjoying a sense of usefulness (all too easily lost to CRPS/RSD) because I’m able to also help someone else.

What is your favorite way to connect with others who either share your situation or who have different perspectives?  Let me know below in the comments!

Gutsy Girl