Nobody Knows Anything...

 ...you really have to look after yourself.

Let's start with my chiropractor (although I have several instances of all sorts of doctors not knowing what they're doing, in terms of what I need...) 

I needed a new back brace. The old one I currently have is not great, but only because the velcro has worn out. It's a brace I got at CVS some years ago. Chiropractor tells me to get a new one. But CVS doesn't have the one I got before as a new model. I don't know what to get. So chiropractor does her own research and tells me her opinion on another brace from some online company. 

Fine. I'll get that.

I don't like it. I think my chiropractor likes it because she thinks it will sit lower on my hips. But it really doesn't. it actually sits higher. So much so that the bottom edge of the brace actually rests at exactly where my "point of spina bifida" lies. Meaning it lies at where my spine was closed when I was a newborn. Which is a very sensitive spot. So it aggravates my initial operation spot. And I hate it. No good at all.

Doctors don't know everything.

In preparation for this post I ran through my memory of all the times doctors advised me to do something, only for that advice to mean nothing to me, or actually ended up being bad advice. I have 11 instances of such times. I'm sure I'm forgetting many others as well. 

The earliest example I can think of (as an adult dealing with my own care) was when I went to the doctor (not my primary, but whomever was in office at the time) with crazy symptoms, and I was promptly admitted to the hospital because "maybe its spinal meningitis" So, to be safe, they admitted me.

Turns out I just had mono.

I guess it was good they were being cautious? But - man! I just had mono. Send me home and to sleep, why doncha!

Back to my chiropractor... I'm just... I don't know. I've known her for about 20 years now. She thinks we're more friendly than I really consider us to be. I've started and stopped chiropractic care with her several times over the years. She did get me through pregnancy, so that's something. 

But right now, with my current situation (and she is fully aware of my current situation) there are, I believe, 3 or 4 major things wrong with my spine right now. And she has admitted that she can't adjust me as she would a "normal" person to solve at least one of these problems, because my spine doesn't even have vertebrae to adjust at the location that needs adjusting! So - what exactly is she doing? I don't know.

And she really wants me to try laser therapy, which is something she offers. It's a slow process... and it may make things actually feel worse before they start to get better... maybe... but it's something to try.

No freakin' thank you. I've tried laser therapy with her before, also at my lower back level. And it seemed to put me in more pain than I started with. And so what did I do at the time? I slowly slinked away into the night, never to be heard from again (until there I was, when I started up with her again this past March.) 

Anyway, I'm not about to do laser therapy with her again right now. It made my pain worse, and I quite frankly can't get any worse right now. I wouldn't be able to take it. And even if it ultimately helps, it's a slow process. I need as fast a fix as possible, which this nerve stimulator would be. But... it's just not happening fast enough. I called yesterday to see if there's any update on when my procedure will happen. Nope. No update. Don't call us, we'll call you. Great. Yippee. Keep on keeping' on. 

As for the last appointment I had with this pain and spine doc who will perform the nerve stimulator procedure... just previous to this appointment, I had an MRI of my thoracic spine. Mid spine. At the appointment, doc asks me if I'm aware that I have (he used the correct scientific term) fluid in my spine. Uh, no. I've since investigated that this is Syringomyelia, which is a condition that can cause increasing pain and deterioration of the spine. Awesome. Anyway, he didn't seem all that concerned about this, and assumed I've "probably" had this all along, and it wasn't going to disrupt what he had to do for the nerve stimuator procedure anyway, so it's all good. But...wait, what?! What the heck! I don't know! Maybe this is a new occurance for me and something important to be aware of. I honestly don't know. I've since tried to look at notes on my past MRIs over the last several years and, no, I don't think I see any evidence of this phenomena before. But, you know, it's all crazy doctor speech that I can't really understand anyway. My point being - maybe fluid in my spine is a relatively new occurrence, but since I'm not sure, my current pain and spine doc is just assuming it's always been there and he's okay with thinking that, but... IT'S NOT COOL TO ASSUME, GUYS!!!! GAH!

So many other times docs have lead me astray...

Let me just say that most primary docs I've ever had haven't had a clue about spina bifida. So they've always erred on the cautious site. Good... but super annoying...

I have always tended to get a ton of UTI's. It's just the way it is for me. And it makes sense, given that I self cath myself. Germs invade. Bacteria collects. UTI's happen. But docs in the past for me have become really concerned that I'm getting too many infections, and have sent me for major testing to figure it all out.

There's nothing to figure out, guys. It's just the way it is.

Another example: when I was pregnant with Sweetie... all was going super well. My OB/GYN admittedly didn't have experience with any other mom with spina bifida, but she was great and happy to work with me and educate herself as we went along. All was well... until she went out on her own maternity leave, and I was left with whomever. I was promptly scheduled an appointment with the anesthesiology team, presumably to see how they were going to handle my labor pains, since I already figured I couldn't have an epidural. Instead, that appointment (at 8 months pregnant, or so) turned in to the local anesthesiology team telling me I actually couldn't come to the local hospital to deliver, as I'd planned to all along, because they said I needed a "tertiary hospital" (which they actually were!) since they couldn't handle any unexpected emergencies that I may present, but a tertiary hospital could. Huh. Interesting. So, at almost full term, I was sent to another hospital, about 1 1/2 hours away, up north, in the winter, because they were better informed to deliver my baby than the local hospital was. 

In the end, I'm not complaining. They were very well informed where I delivered, very experienced with my "type" and my experience all around was great. Couldn't have been better.

And I got my freakin' epidural, thank you very much.

Still. It would have been nice to have my delivery plan in place from the get go, instead of switched on me in the 11th hour because the docs were finally admitting they didn't know how to effectively help me.

Another ill informed medical professional experience... I once got new leg braces because I expressed (as an adult) that I wished I could sometimes wear high heels if I wanted. So - he made me crazy braces that technically would have allowed for this... but I absolutely hated these braces, they didn't help me at all, and I ended up going to get my tried and true style shortly thereafter. Sure, it would have been nice to have the option to wear different heights of heel. But I'd so much more like for an educated brace maker to tell me why it's really best for me to stick with the style I have. Ultimately, that's what I got. But I had to endure crazy "I'll do whatever you want" guy first.

An let's not forget... about 2 1/2 years ago I was referred by my PCP (who, awesomely, actually does have a great knowledge of spina bifida and has been a wonderful resource for me) to a neurosurgeon up north (at the same hospital Sweetie was born at) to investigate and resolve my increasing back pain. Long story short... yes, it was found that I have a tethered spinal cord, which absolutely could be the cause of my pain (just like it was about 20 years prior). But that surgery 20 years prior, while resolving my pain, resulted in much weakened abilities. Prior to that surgery, I only needed my leg braces to get around. Ever since that surgery, I've also needed a walking stick to aid in my mobility. It's a risky surgery. And one I'm not excited to repeat, if I don't have to. Anyway... it was also discovered, at this same time, that my shunt had malfunctioned. And the neurosurgeon (who was a pediatric neurosurgeon, because heaven forbid there actually be a decent amount of docs who can intelligently manage and treat adult spina bifida patients) reasoned that that, too, could be causing me pain in my back, as spinal fluid was building up at the point of my original spine closer. Fixing my shunt functionality, he reasoned, would theoretically take the fluid pressure off my spine and ease my pain. And it wasn't a risky surgery at all.

So - that's the surgery I went with. Heck, my shunt had clearly malfunctioned, for who knows how long, as evidenced by MRIs showing a great build up of spinal fluid in my brain. I HAD to have this corrected, and it may fix my back pain as well...

Well... 2 1/2 years later and my back pain is worse than every, getting worse every day, it seems, and... ever since I came out of that surgery, my head has felt "stuffy" and "full" and I've had non stop, constant ringing in my ears.

Yippy freakin' yay. Yep, came out of that one worse than I went in. Awesome. And what has that doctor said (that doctor who has now moved away to a hospital in Texas) - The stuffiness and ringing "should" get better with time, as I get more and more post op. And also? You know, you're just aging. Things hurt. It's just the way it is. There's not a lot of history with aging spina bifida patients to know what's really going on for them and how to fix.

Awesome.

You know? All of the docs I've every dealt with have been super nice. I've really liked them, personally speaking. But, boy, have they not known what to do for me, health wise.

And all this time, I've been trying. I've been learning. How to self advocate. How to make my own best decisions. But at a certain point... you go to doctors because they are supposed to know what's what. They are supposed to guide you towards best answers. They are the experts in their fields. And so you learn to trust them. You want to trust them. You take their advise, even while investigating yourself and trying to figure out the best for yourself. 

The best answer I'd wish for is that all doctors thoroughly investigate their patients' portfolios and understand, to the best of their knowledge, their patients' full medical history and medical needs. What have their patients' tried before? What has worked? What hasn't? What are their patients' "norm"? And then - go from there with a plan best laid out for success.

But, of course, that's a heck of a lot to ask. Doctors have a lot of patients. They can't possibly keep 100% on track with what every one of them needs all the time. I reasonably know this, and appreciate it. I get it.

But - gosh! - I'm not the doctor. I go to see the doctors. And I want good, useful advice. Not best guesses. I want real answers. And I expect docs to have them.

But I have to always remind myself... I once read, not all that long ago, that med students get about 1 small paragraph worth of textbook info on what spina bifida is all about in their studies. That's it. So....

I'm the best go-to for answers on what's best for me. It's a shame, but I guess it's true. 

I'm learning. I keep trying. I've got to be my own best advocate. I'm the one with pains and problems and questions... I've got to keep fighting for my own best answers. 

Cuz nobody knows anything. 

But I know myself. 

Looking Back, Looking Ahead

When I was a child, I was quite active. 

I've always worn leg braces. Everything from metal braces all the way up to my waist, to the plastic style I wear now, and for most of my life, which are only from below my knees down. But even as a younger child with those full length metal monstrosities, I clearly remember always being reminded to take it easy. Too much activity will break the braces. And, yes, I've broken my fair share of braces over the years. 

I remember being told as a child that I either couldn't run, or at least I shouldn't. My braces could break. I could get sores on my feet. It just wouldn't be good. So I never ran. But there was this one day... I was 2 houses down from my own, playing with a friend. A storm came rolling in. I needed to get home before the rain came down. And, boy, did I get home quick! I ran so fast - like I'd never ran before and have never run since. I felt like I was literally flying. I remember, as I was running, that I couldn't believe I was actually doing this in this very moment. But I kept going. I didn't stop until I was in my house and safe from the impending extreme weather. Wow! I could run! How about that?!

I was young and wanted to have fun! With three able bodied older brothers growing up with me, I wanted to play with them as much as they'd allow (even if they didn't allow it) and do the things they did. I played kick ball with them in our front yard, complete with running the bases all the way to home base. They shot hoops in our driveway, and I did too. We played H.O.R.S.E. all the time and I became very adept at swishing the ball clean into the basket without touching the rim. Loved that sound! I also had my own jump rope and absolutely loved the feeling of hopping over a faster and faster twirling rope. Pure joy! And when my brothers got roller skates, I wanted my own pair too - and I got 'em! That activity, admittedly, was not something I was very good at at all. But my mom or dad, along with one of my brothers, would hold me up and allow me a careful taste of what it must feel like to roll around on tiny wheels. My family has always been great about offering me the opportunities to try out whatever I wanted, no holding back.

As a pre-teen, after we moved from OH to the New England area, my parents joined in with the local Spina Bifida Association. This group offered us many opportunities each year to get together for socializing, information gathering and sharing, and just plain fun. One such fun outing was a ski trip to the nearby beautiful mountains of the area. Wow! Skiing!

Now, my family in general was not a skiing family. I don't recall my parents ever going themselves or offering to take my brothers on a ski day or trip. Yet here I was, the physically disabled family member among us, and I was getting the chance to learn to ski! And indeed I did. I loved it! Spent the morning on the bunny hill, learning the tricks of the trade. And the only difference between me and an able bodied skier was that my poles had small skis on them too. This allowed me to use my poles for balance but also swoop and swish down the slope with ease. By the late morning I was going up with my instructor and dad in the chair lift, high up the mountain, and then flying down on my skies, bobbing this way and that, fast and faster still. This was such a thrill and I had really so, so much fun.

But then it was lunch time and we went in for food. While there, we took off my ski boots to inspect my feet... which had developed an open, bloody blister from all the activity and the rubbing of the ski boot against my foot in a way it was not used to before. And because I can't feel below my knees, I had no idea this sore had formed. Had we not decided to check, I would have gone back out there after lunch. But it was not to be. My fun day of this new, freeing, wonderful activity was cut short. And I've never gotten the chance to go back again.

I've also been horseback riding, both in my youth and in my younger adulthood. Nothing too taxing there, but a nice steady trot either within the riding area of the stable or out for a nice ride in the woods. Relying on this beautiful beast to carry me where otherwise I would not be able to walk. Lovely day, lovely walk, majestic new friend to help me through it all. I really do love horseback riding. 

And then, I as got older, I met my now husband, and adventured with him. Long walks in the woods, countless games of mini golf, even a vacation to France where we walked the Champs Elysees, climbed Notre Dame, explored the main and side streets of the city. All day long. Not a care - or pain - in the world. And we'd arrived there after a week on the Brittany coast, doing much of the same. Walking everywhere we could to discover the beauty and history that our surroundings offered us. And then, at night, dancing with friends at the local night club. Young, free, happy and in love. 

As an employed older teenager and younger adult, one of my first jobs was at a local, large, well-known bookstore. Shifts of at least 4 hours, maybe longer. And if my shift had me at the cash register, that was just fine for me! Tell me to stand in one spot for as long as you ask me to and I was your girl for the job! No problem at all. Chatting with my coworkers and the customers, tallying up purchases, bagging up books and sending people on their way with a cheerful "Have a nice day!" Yep, that was a great job. A little less so if I was put on the info desk, where part of the job was taking customers to the place in the store where their desired book lived. But only because I am a bit slower at walking than the able bodied person. I wasn't in pain, I was just slow. That's okay. Still, they had me on the registers as much as they could and I was happy to be there. A great first job.

Back to my school aged days - particularly high school and college... I wore the heavy backpack on my back, just like every other student had theirs to wear. Yes, I went to a small, private high school, largely because the local public school was way too obnoxiously large for me to get around in a timely way, abiding by the provided bell schedule to get myself from point A at one end of the building to point B at the other and up several flights of stairs, all within the given 3 or so minutes between classes. Sure, they could have and would have made concessions for me, like allowing me to leave class early so I had extra minutes to reach the next. And there were elevators that I could have used, but these were not there for the average student to take advantage of. One could only use the elevators if they were physically incapacitated from using the stairs. And I was not about to allow myself to be pointed out as special. I did not want to be treated differently from my peers. If they have 3 minutes to get to class, then that's what it was for me too, as far as I was concerned. And if other able bodied classmates couldn't ride in the elevators, well then, neither could I.

And so, to avoid all of this all together, and on the advice of my brothers who did go to this monstrously large school, I chose to go to the smaller, private, (all girls, Catholic) school. Me not being Catholic, but that's okay. Much easier to get around, yet still not a cake walk in any way. 3 or 4 stories of classrooms, no elevator, 2 different buildings to move between. Yes, and heavy, heavy backpacks holding me down, But I did it, gladly, relatively easily, and happily. No troubles here. High school was as good of an experience as it could have been. 

As was college. Yes, I was able to secure a first level dorm room, which I was allowed to keep for 2 years in a row. This being easier than walking up and down staircases in our old dorm buildings, again with no elevators. But I walked the campus to each of my classes every day. Sometimes close by, sometimes not so much. But I did it with not much trouble at all. Ah, to be young again. 

I have always been able to walk about as I've pleased, whether we're visiting a large museum, exploring a small town or big city (NYC! Central Park! Time Square! What an adventure!). I've walked miles at once down forest paths, enjoying the time with Hubby and Sweetie as they geocache and I simply cherish the time together. And, yes, with Hubby by my side I've always had the pleasure of having his support as he holds my hand or lets me lean on him as we go on. And, as time marches on and I've suffered the ever increasing displeasure of more and more pain in my back and numbness in my legs, I'd have to increasingly stop, sit, and rest a few minutes before I could carry on. But carry on I always did and always could. Moving on!

No one has ever made me do more than I thought I was able to. And my walking companions - namely, Hubby and Sweetie - have always, always given me the time and space to rest when I needed it and move on when I alone determined I was able to do so. No judgement, no rushing, just me knowing what my body could do and when it could do it, and they graciously abiding by the will of my abilities. All is good, all is well. In my own time.

But now. No. Not anymore. No more forest walks. No more adventurous explorations. Heck, no more grocery (or most any) store.

And yet... the occasional trip to Target now has me tooling through the store using their electric seated carts - and I feel free again. Able to shop as I need without pain, numbness or exhaustion. Yay! Visits to museums (in pre-Covid times, anyway) have me rolling through the hallways and exhibit rooms using loaned wheelchairs from the front desk - and I am thrilled that I could go on forever in this way, not holding myself or anyone I'm with back from seeing anything we wish to see. I don't feel embarrassed or like a spectacle or different or anything I feared to be back in the day. I feel free and able and happy to have these options that can help me live a more full life than without them. 

Hubby doesn't geocache much anymore, but if he were to pick up the hobby again, he'd simply do it on his own or with Sweetie, never expecting me to join along. We haven't really vacationed much lately, and certainly with the current pandemic, we don't have plans for much travel coming up. But when we do get back to adventure as able, we will adapt, adjust, and make sure helps are in place to make the experience work well for me. I'll still get out there, it will just, perhaps, be in a new way. And also, once I have my nerve stimulator placed, that may in itself be all I need to feel young, free and able again, just like I did in my previous years. That will be lovely. I'm hopeful, but we'll just have to see.

But whatever the case may be for me - I'll find my way. I'll keep doing what I want, in a way that is best for me in my current situation. I'm not going to stop. I'm just going to change. Change with the times. It's what we all have to do, right? Getting older has changed me, for sure. It changes everyone. But we adapt. We find our new way. 

And we find the best way to feel as free, able, and happy in the moment as we can. Times change, bodies and abilities change. For all of us. But there is always a way to do as you wish, engaging in loved activities in meaningful ways. 

Carry on. It can be done. No holding back. No looking back...