You’ve Got This

Huh. It’s been over a month since I last wrote. When we were in the middle of Covid quarantine. All good now! Back to work, feeling fine, and more or less at least temporarily immune to catching it again - depending on who you ask. It’s complicated. 

Anyway - when I started to write this, it was December 20th, 2020, which means it was Sweetie’s 18th birthday! 

You have not been looking forward to this birthday, Sweetie. Turning 18. Becoming an official adult. You still see yourself as a little girl and you don’t think you’re ready for all the responsibilities that come along with being a grown up. 

I can’t say I can blame you, honestly. But I also want to assure you not to worry.

It’s not like a switch has flicked and we are done raising you. “You’re good to go! Be free, my child! You’ve got this - have a great life.” No, it’s not like that at all. 

In fact, nothing has really changed, other than you can now vote, and it’s up to you to sign documents about your own health and personal dealings. But we can still advise you on what you’re signing, if you want our input. It’s up to you. Frankly, though, I’m not all that worried about any decisions you’ll make for yourself. Decisions that require paperwork, or not. You HAVE got this! You’re smarter and more reasonable than you give yourself credit for when it comes to making important choices about what’s best for you. 

You are an extremely careful and cautious person. You do not take any chances when it comes to your own safety or that of those you love. You always err on the side of care and self preservation. Maybe to a fault. And maybe - almost certainly - this has a little to do with the touch of anxiety that twitches in your brain. That alert of fear that makes you just a bit nervous to move ahead on certain uncertain things. It’s not necessarily a bad thing. It’s good to be safe, to be cautious, to take your time. You look at the facts, you take the time for self reflection, you don’t let yourself be swayed by others’ mere, possibly uneducated opinions. You do you, and you are proud of it. And we are proud of you every time you stand up for your own convictions. 

This trait of yours - to do and think as you wish, no matter others’ attempted influence - goes way back. We remember your kindergarten teacher telling us how you always played with the toys and tools you wanted during free time, never following along with what the other kids were doing. Even those kids you had become friendly with. Nope. You stuck to your guns and entertained yourself exactly how you wanted to be entertained. 

You are thoughtful. You sometimes think you have no particular opinion on certain subjects  - especially “grown up” subjects such as politics or finances. But you do have opinions, and understanding! And you can be very mature about what you think and how you express yourself. I remember when you were younger - maybe 4th grade or so - and we surprised you after school by taking you to the space and science museum. There was a gift shop at the museum and you asked us if this was a buying day or a just looking day. It had to be a “just looking” day, we told you. But you put up no fuss, didn’t ask for anything, understood that money could be a struggle for us. You respected and accepted our answer and went on about your surprise treat of an afternoon having the time of your life. Simple as that.  

It may take you a minute or two to collect your thoughts in order to express them in a way that makes sense to you. But when you do speak them... well, those thoughts make sense to anyone listening. You are clear, well spoken and smart about why you believe in a certain thing, why you think a certain way. You clearly state what you need. We are constantly in awe of how well you can express what you’re thinking and why. You are wise beyond your years. 

This may come through the most after you’ve experienced a bit of a meltdown. Meltdowns are something you experience when your senses have been overwhelmed. It’s a common happening for you, or anyone like you, who lives their life managing ADHD and ASD (Autism Spectrum Disorder) symptoms. So, yes, you may melt down, cry, yell, run away and slam doors. But we have learned to let you be when this happens. We give you a few minutes and, sure enough, in just a little bit you will inevitably come back to us, now calmed down, and tell us with a cool head the emotions you’re feeling, why you’re feeling them, and what you need from us to make a change for the better so that maybe this won’t happen again. Your words are wise and well thought out and we are always impressed. You know who you are and what you need from yourself and others to get by. 

You are brave! To be able to voice these thoughts and opinions as clearly as you do, backed up with good reasoning and understanding of the situation at hand - well, it’s just beautiful to watch. And what’s more, you don’t care if others around you feel differently than you do. You know how you feel. You’re fine with - actually encourage - others to know and express their own true hearts. But whatever they all think or do is not going to stop you from trusting your own heart and living your life the best way you see fit for you. Most people your age want so much to fit in, be liked, and do the cool, popular thing. But you! You are bravely living your best life, no matter what others may say or think. And yet, you would never, ever admit to this bravery in this way. It’s just what one should do, how a person should be - true to their own self. You’re just living your life, making the most out of the cards you’ve been dealt - and doing it beautifully, in our opinion.. 

You are kind and loyal. You truly care about others - all people everywhere, but especially those you love. You are a fierce defender not only of your own rights and beliefs, as described above, but also everyone else’s as well. You keep others’ confidences, even if they haven’t expressly asked you to. This, like all your wonderful characteristics, have been a part of you all your life. I remember asking you at some point in middle school if one friend or another of yours had a boyfriend or girlfriend. You wouldn’t tell me because you said it was not your information to share nor my information to know. Fair enough. But on the other hand, you understand when the important secrets need to be shared, and have asked for our help with big issues the few rare times when they have crept into your realm of existence. You just know how to take care of people - including yourself - and do what needs to be done to make sure that happens. Plain and simple. 

Don’t get me wrong - you have your quirks. You do things we don’t like. You could be much more eloquent for our taste in how you get along with others from time to time. But you are you. At least Dad and I know why you sometimes behave in less than desirable ways. You have challenges you struggle with every day - struggles that the rest of us can’t even pretend to fully understand. But we have learned a lot and try to do the best we can to understand for ourselves who you are as a whole person. And we do what we can to educate others when they need a little bit more understanding themselves. We’ve taken care to make sure your particular needs are met. And I think we’ve done a pretty good job. Enough so that you have learned what you need to do for yourself in most cases. You’re doing great! We are so proud. 

So. You are 18. Officially an adult in the eyes of  U.S. law. But this is just the beginning. This is just a small stepping stone towards greater adventures, more adult responsibilities, and your whole life ahead of you. We are still here for you, and will be for as long as you need us. And I have a little secret for you... you will always need us, in one way or another. Just like we need you, now and always. I can’t imagine a world or a time when I won’t worry about you, or think of you, or hope that you are making good decisions for yourself and what will be your own family one day. 

But from what you’ve demonstrated already? I’m not all that concerned, really. Yeah, you’ve got this. You will be - you are - one fine human being. And we love you so much. Happy birthday, Swee. Keep on keepin on. 

Yesterday Didn't Happen

Not the way it was supposed to, anyway.

That is, I did not have the procedure to start my nerve stimulator trial. Because - Covid 19 invaded the house. And quarantine ensued. 

No leaving the house means no procedure. For now. Trying again in mid January.

It’s okay, really. I was actually becoming really sad, even borderline depressed, that I was going to go through this trial and have said trial end the day before Thanksgiving. 

I don’t know that I’ve ever really explained in detail how this trial - vs. the actual procedure - actually works. So let me do that...

When one is chosen as a candidate for a nerve stimulator, there are many steps in the process towards actually getting it done. The main thing being that they first test out, with a trial period, whether or not this stimulator will actually work for you. So you have a procedure done where leads are put into your spine, much like an epidural is placed for a woman in labor. Once the leads are in, there’s a device taped to you back that controls how much your nerves are managed to stop the pain message from getting to your brain. This trial, where the leads are in and the device is taped on you, lasts 5-7 days. Days during which one should experience much less pain, theoretically. If this is, indeed, the case, then you may decide with your doctor that you want to go ahead with the actual procedure. So then you schedule a different time altogether when you will have that done. And that’s when the device that was taped on your back during the trial is placed inside your abdomen via a surgical procedure. 

Basically, you have the trial so you know darn well that this thing you’re having done is actually going to work. 

And so, as you can imagine, one should experience 5-7 days of relatively pain-free living during the trial period, assuming it all works as it should. But then the trial is over, the leads are removed, and you are back to living in pain from that day on until whenever the permanent procedure takes place (which could be weeks to months later.) In fact, I would say you’d most likely experience that returned pain as worse pain than it was in the first place, because you just had several days reprieve from it. So when it comes back it just hurts that much more. 

And my trial was scheduled to start yesterday, the 20th, and end on this coming Wednesday, the 25th. The day before Thanksgiving. Which would have meant an incredibly pained holiday for me. A day that’s supposed to be fun and festive and wonderful would most likely have been anything but, to me. 

I was truly not looking forward to that, as you can imagine. A major bummer.

So, I guess in the end, the fates took care of that worry for me and took the whole thing off the table. Trial now scheduled for January 15. Good to go - looking forward to it!

And I just keep on keeping on. I’ve been in pain this long, what’s a little bit longer? Best to make sure I’m healthy and 100% up for my trial to take place. It’s all for the good, all meant to be. 

And for now, my job - and the job of everyone in the house - is to abide by safe living practices, keep our distance from one another, and get through this as best we can. Hubby and I have been out of work for a week and a half now, with one more week to go. By then our household should be well and truly past this and life can go on. 

The break from work has been nice. But I can think of way more exciting ways to spend a work “vacation” than what’s been going on here. But then again, given the situation we find ourselves in, it could be waaaaaay worse. It’s not that awful. We’re all getting by. Surviving. Thank goodness. 

So, that’s my update. Not the update I was hoping to report today, but an update nonetheless. 

I’m reminded of a comedian’s comment I once heard. Don’t remember who it was, or what else he was talking about in his routine. But he was saying how he always loves when he’s next in line. He’s next! It’s happening! It’s almost his time! After all that waiting in that long line, he is finally next! The anticipation! The excitement! NEXT! Yes!

Well, I’m next, baby. Nerve stimulator trial - I’m coming for ya! I. Am. Next! And nothing’s gonna stop me now. 

All the Feels

I’m here to write, but don’t know what to say. 

I guess I’m just glad for a brand new day. 

All the emotion, the pent up stress, the gloom -

I feel it releasing, yet coming too quick, too soon.

And it’s not just the race - Biden vs Trump. 

Although when I think of it, there’s certainly that lump

of pride in my throat, a weightlessness, a calm

It’s like our whole country has been soothed by a balm.

But aside from that there’s also this COVID-19. 

This thing that has controlled our lives, or so it seems.

And with that, the holidays! And how to proceed.

Do what people want, or what we need.

What I need, and Hubby, and Swee

Despite others saying, “all’s just fine, listen to me.”

Am I crazy taking this seriously, listening to science?

Or is the media and my peers making me biased?

Others say, “Don’t worry, news just tries to scare you.   

It points out the worst, but they really have no clue.

We are safe, there’s really nothing wrong,” 

Yet this virus is sometimes silent and often strong.

It’s not that I don’t trust, don’t love, don’t miss you.

It’s just that I want us all to be safe - that’s the issue.

And not just us, our dear ones, our fam.

But everyone I pass - we’re all on the lam

from Corona, and we just can’t know how to proceed.

It could not affect me, and - God forbid - it could lead

To your death, and I just won’t have that be.

Not on my watch. Keep us all healthy, if not happy. 

Let me stay safe, as I keep you.

And together we’ll gather when we’re truly able to. 

Okay - you think that’s it? I’m not done yet.

See, I’ve got this pain in my back that just won’t get.

But I’ve a date with my doc! November 20th’s the day! 

My trial for relief will begin - hurray! 

Cuz it hurts so much, y’all. It really does. 

To be finally pain-free - can you believe it, Cuz?

Hubby says I’m a martyr, that I just always “take it”

Without others ever knowing how much I can’t make it

another day, another step, another minute. 

Well, the game has arrived and I’m aiming to win it! 

Honestly I just want to go to the store, 

Take a walk in the woods, yeah, and so much more.

Man, I’m hoping this works, so many have had success.

It’s my turn now, yes it is - YES!

I’m betting on a pain-free holiday.

One where I’m truly thankful and can say, 

I’m free at last! I can do! I can live!

Oh, how happy I will be when I can give

all my focus, all my care

To the ones I love. And to not give a tear

to these aches, pulls and pains

Ahhhh, I’m hopeful I’ll see no remains.

Wish me well, please wish me luck. 

That I’m well and promptly pulled from the muck

And the mire, the terrible pit of pain goo. 

And I can let go of the pride that controls my boo hoos.

Tears of joy, of relief, just - you know - relaxation.

That’s what I need now - a new sensation.

My body, my brain, my heart, my soul. 

Just, ya know, no more toll. 

So anyway, that’s it. That’s all. It’s all there.

The country, the virus, myself - I’m aware

Of the changes that are coming! So good. So great!

But all of it still so unsure - so we wait.

There is hope, that’s for sure, but we just can’t know.

Just hope and trust it all - every bad thing - will go.

From the personal to national to worldwide...

So much is at stake. We must set our mind, 

believe in ourselves and do not waiver.

And can I ask just this one small favor?

We may not agree in lots of big things.

But we can get along fine if we all give wings

to love. To trust. To just trying to make things right. 

By working together and saying goodnight

to the struggles and strife that’s lead the way

for so long. Let’s just be done with it, okay.

Let’s come together and support this land, 

Our families, ourselves, and...

Find the peace we can take to our hearts. 

I don’t know - it sounds like a pretty good start

to healing - our country, ourselves, the earth.

That’s my thoughts  I’m done. For whatever it’s worth. 

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...

Purpose. Annoyances. Effort. Life.

He always has something to do. 40 hrs. a week job, plus overtime. Another occasional sideline job. Shopping. Laundry. Cooking. Preparing dinner plates. Working on projects in his workshop (currently a time sensitive project he was commissioned to do by a friend.) He’s on 2 Boards of Directors - one as VP, one as Secretary. Lots of effort into everything he does. He is always moving. And I love him for it.

She goes to one of the top STEM-focused charter schools in the U.S., a 2nd year Junior this year because there are too many requirements to fit into one Senior year. At least, for her. She struggles with ADHD, High Functioning Autism, Executive Functioning Dysfunction and a touch of Anxiety thrown in. All this to say - she’s super smart and works best with clear rules, expectations and structure. So, her rigid, intense school requirements actually work really well for her.... if she’s not overwhelmed by the work, getting distracted from the work, can maintain an interest in the work, etc. She’s got loads to do, and has loads of good intentions to get things done. But then she... needs to go to the bathroom, get a sweater, a snack, then remembers that she forgot to brush her teeth, realizes she’s at a good stopping point (hasn’t even started) to take her (very long) shower. Then it’s time to eat again. Then, then, then.... it doesn’t appear that she is willing to always put in the effort. But we know she always intends to do well, even if her mind works against her in getting there. She is always moving. And I love her in spite of it.

The times that it looks like she’s actually working, she’s recently admitted that she may not in fact be working at all (she is super honest, at least there’s that.) She may be playing a game, watching a video, or texting with friends - if the schoolwork subject isn’t holding her interest. But now I know this and I can never really know what she’s doing. So - she thought I was naggy before about getting her onto her work. Now I’m really naggy. But, the more I nag, the less likely she is to do what needs to be done. We can never tell her what to do. She’s going to do her own thing in her own way no. matter. what. 

I am always with her. Evenings, while he’s at work, and weekends when he’s doing All. The. Things. She can and does easily view me as the bad guy, always harping on her to sit down already and get to work. But, again, it really doesn’t matter what I or he says, or how we say it. She’s doing it her way, always. 

So - he actually is doing everything humanly possible, and then some. She needs to be doing a whole lot more, in a more timely manner, than she is or believes herself to be capable of doing. She’s capable. Very capable. But her mind gets in her way. All the time. 

And I? I do what I can. I sit on the couch. Will fold laundry - eventually when it’s brought to me. But he or she has to deliver the folded piles to where they belong. I’ll clean the bathroom sink and toilet when need be. Put the new roll of toilet paper on the roll, like no one else seems to know how to do. I’ll occasionally put dishes in the  dishwasher or empty it. But there are others in the house who do this as well, so it’s by no means even close to a regular chore for me. I’ll prepare myself a weekend lunch. Make myself a cup of tea - but have her or him bring the prepared cup into where I’m sitting. I play lots of games on my phone. I read. And I wait for family time together. Which may not come on any particular day, if he and she are too busy or trying to settle enough to finally be busy at work that needs to get done. So, if this is the case, I... I don’t know. Go to bed early I guess.

Me? I don’t have work that needs doing. Well - I pay the bills. Balance the money. But I do this from the computer. The same computer she uses to complete a fair amount of her schoolwork. Schoolwork comes first. So I wait my turn. Maybe I’ll get my turn in earlier before she’s even awake on the weekends, or right when I get home after work. But maybe not. It depends on what she’s got going on. 

I’m in pain. It hurts to be on my feet, up and about. So I sit a lot, which is far less painful. But - the more I sit, the stiffer I get and the more painful it is when I’m up and about. So - I shouldn’t sit so much. So I get up. I do the things I’m able to do. It’s good for me to move. But then I’m in so much pain that I just want to sit again. So I do. But that’s not good for me either. Stiffness and pain takes over, evident when I try to get up the next time. Which I must. Repeat cycle... 

I am not always moving. But maybe I should be moving more. Or not. Who knows. 

I’m annoyed by my chiropractor. 2 visits a week, every week. For months now. And no relief. Often she seems like she’s going through the motions with no personal attention to my needs. Other times we have long conversations about things I can and should do for myself. Only for her to ask me sometime later if I’m doing a certain thing - something she should well know that I’m doing because we’d previously talked about it at length! I’m sure I’m just irked because of the lack of pain relief. But I need to keep seeing her because, once I have the nerve stimulator placed, that will only help the pain. I’ll need to rely on her for the physical well being of the structure of my spine.

Speaking of this nerve stimulator... what a long, crazy process this has been. All the hoops to jump though - ridiculous! And here I am, set to jump through the last hoop later this week, and they still tell me the procedure won’t happen until November! It seems to me that a procedure specifically meant to help someone in constant pain would be something that would be able to be scheduled as quickly as possible. Want a nose job? I bet you could schedule that for next week. Want to stop living in pain? Sorry, you’ve got several things to do to set up this procedure. 5 or 6 months down the road, we might be ready for you. I’m calling tomorrow to see about that. Why on earth can’t it be sooner?! 

I love my job, but after each weekend I feel like I just want one more day off from the office. Sure! I can take a day. Call myself out. That would be okay. Except... what exactly will I do with that extra day off? That’s right. Nothing. Just sit on the couch and have another boring day at home just like the 2 weekend days I’ve already had. Big whoop. I don’t need that either. Might as well just go to work I guess. 

And Mondays start off with a trip to the chiropractor. Yay. One more visit to pay for without physical relief from pain. Great. 

And he’ll start his work week too. And she’ll try to continue to climb out of her deep hole of schoolwork.

And I’ll continue on as I do. Not with much work, outside of work itself.

As little moving as I can get away with.

Not with much purpose, it often feels like, to me. Not as much as him or her, anyway.

A fair amount of mounting daily annoyances.  

But with a whole lot of effort. I can assure you that.

A Part vs. Apart

About a decade ago this weekend, maybe 11 years ago, I remember it was a cold and rainy few days on the Maine coast. It was our first time visiting Ferry Beach with several other members of our newfound family. Our church family. And, even though it was cold and rainy, we were in Heaven. This! This was the idyllic place that would become our annual post-Labor Day retreat get away. 

(Oh, and the 3rd picture down on my blog header? Of Sweetie twirling in the yellow cup? That’s at Ferry Beach. Every year I’d at least try to get her to let me take this year’s version of the same picture there on the playground. Not as easy to do as she got older. But I do have several others similar to this one.  Fun to see her twirling through the years.)

All this time later and we still look forward to this gathering of good friends, ocean breezes, talent shows, crafts, social hour, coffee on the porch, marathon games, trivia contests, communal meals, services in The Grove, and as much community or alone reflection time as one can desire. It’s all up to you.

Except this year. Because of the COVID-19 pandemic still trying to control our every move, our Ferry Beach weekend was cancelled. Oh, there was still hope for awhile. Any of our members could have decided on their own that they still wanted to go. But as a whole church, the overwhelming majority thought (ours included) was that it just wasn’t safe to go. So - we are not there. 

Only one other time in the last 11 years, since we started going, have we 3 not gone, and that was in order to celebrate my parents’ 50th wedding anniversary with family. That year, we were sad to miss regathering with our church family after a summer away from each other, yet happy enough to know that Ferry Beach weekend was underway anyway and we’d see everyone the next weekend when we joined again in church to start another year together. 

But today - this weekend - none of our church family is at Ferry Beach. Furthermore, this year’s next weekend will not see us all joining together again in person. However, this year - tomorrow! - we will gather again for the new normal we’ve started to get used to - Zoom church. Our annual Water Communion service. Where, sometimes, we and/or fellow church members bring what we call “virtual water” with us, representing meaningful summer adventures we’ve had - like weekends away at Ferry Beach, for example. Well, guess what? This year, even the real water contributed for the service will, in essence, be virtual as we watch, via Zoom, the drops flow together, representing our coming together again for another church year, all as one. 

Ferry Beach. Our church. Our church family. Oh, how I miss them. We 3 all have. Not to say there aren’t opportunities to at least virtually be with one another. There were summer services. There are small group ministries. There are virtual and real life groups that enjoy various activities together, like crafting, book discussing, and social service enterprising. 

And have I chosen to include myself in any of these? No. And when, in better times, we have actually gone to church, per usual, am I a social butterfly before service or at coffee hour after, chit chatting with everyone I possibly can? No. In fact, a lot of times we head home very shortly after service, bypassing everyone else as they sip their coffee or tea and nibble on some treats. 

So, you might ask, if it doesn’t appear that I mingle with my fellow church goers much anyway, where do I get off saying that I miss church and its people? 

Well, I just do. I guess I liken my relationship with my church family to that of an old, comfy relationship. It just feels good to be in that sanctuary, to see those people, to hear the hubbub of friendly chatter, laughter, sometimes tears, hugs, singing, music...everything. Joys and concerns. No talking necessarily needed. Just listening.

Our affirmation. Our weekly tradition of centering ourselves together. Deeply listening to and loving not only our new minister, but the sermons being thoughtfully crafted and enthusiastically delivered. Learning together, questioning together, challenging each other to be the best versions of ourselves not just for this one hour together, but always. Out into the world. Let it be so. 

See, my church family and I (and Hubby and Sweetie) - we’re all like-minded. For me, just being with them every week motivates me to be better, do better, and carry that light everywhere I go. At least that’s the idea. Do any of us truly work towards the betterment of ourselves and the world with every breath and step we take? Well, I won’t speak for others, I guess, but for me, I know I could always do more. Lots more. But I try. And I care. And I want improvement all around - for myself and others. And I aim to keep trying, every day. To educate myself more, to question more, to be more.

At our church, that’s the goal. Be kind to yourself and to others, to listen, to question, to learn. To be and do goodness. However, in your own way, big or small, that that happens for you. And then try again tomorrow. Repeat.

Just being in that physical space with those people surrounding each other and me. That’s enough for me to carry on, reminding me to continue on my pursuit of all things good.

Anyway... what’s my point here? I’m writing this post on my little iPhone because Sweetie is trying (trying!) to work on some homework she is not at all interested in. That’s super difficult for someone with ADHD and Autism. It’s taken her all day of postponing to now finally sit down and try. I could have told her at any point that I actually want to use the computer and write. But, no. I’m not giving her another reason to put off her work, just so I can write. I can do it on my phone, as painstaking as it is. It’s actually okay. I’ve done it before (or on whatever non-phone version of a traveling device it was at the time.)

At least once before, in fact. All those years back, 10 or 11 years ago, at Ferry Beach. Back when I was a regular blogger with a strict posting schedule to maintain. Who cares that I was away at the beach! Who cares that I didn’t have a computer or laptop available to me! I have to write! I have to post! And I will - with my little device. It’ll work. And it did. 

And I did it today too. I’ve written my post. Granted, I don’t feel as “one” with my thoughts successfully getting onto the page as I usually do as I sit at the desk and computer. I feel a lot more “all over the place“ in today’s electronic scribblings. But I’ll read it back. I’ll make edits. I'll give it a bit before posting. 

But I will post. Because writing, and sharing that with others, fills my soul.

And we will, one day, return to Ferry Beach with our church family. And into our church itself, as soon as we can agree - and we’re advised - that it’s safe to do so. And, with that, I will feel complete again, participating in our regular weekly lessons on love, laughter and life. Just to be surrounded by these people, these lessons, is enough to fill my soul. 

But being apart from them? Zoom church is fine and I do look forward to our first service tomorrow and for all those to come in the weeks ahead. 

It’s just not the same as being together in person. At the beach, in church, anywhere. 

Not the same at all.

Suffice It To Say

Hello! And Happy Labor Day Weekend to you! Hopefully you are enjoying a special long weekend doing something you love with those you love. I and my people are doing just that. Sort of. Mostly it's the same as any weekend, but so nice to have an extra day off with no particular responsibilities.

I'm happy to report that I've started to expand my audience a bit, here at Sweetie & Me. I've alerted my Facebook friends to my posts, and I've also checked in with a couple Spina Bifida groups I'm a part of, letting them know that this ol' blog exists and is up and kickin' again. I got some excited responses from a few people, so I am extra invigorated to keep writing and keep telling my truths. Yay, me!

But with that said... now what? I'm not sure what my next topic is. The pain I deal with on a daily basis is a pretty huge topic for me, but I've just written about that. No need to really go on too much there. At least not until there's more news on my nerve stimulator procedure. 

This blog is called Sweetie & Me and, therefore, I should write a bit about Sweetie. But I've already explained that she is older now and I feel she's more or less an off limits topic. Suffice it to say, she is doing well. I have high hopes for this school year. She seems motivated. She has a boyfriend, from the same tough school, and they both seem envigorated this year to do good things and keep on top of their grades. This pandemic we're all experiencing may actually be a help there, since they are doing remote school for now and therefore don't see each other every day, per usual. But we do allow them to see each other on the weekends (that family is part of our limited bubble.) In Sweetie's case, she can only see him if all school work is caught up to the best of her abilities. I believe he probably has similar conditions from his parents. So - they are both motivated to keep up with school if they intend to also be able to see each other. Hopefully these conditional hang outs will continue to be able to happen, grades will be up, and all will be well.

Let's see, what else?... I could talk about my job (which I love), but somehow I don't think that's an appropriate topic. Suffice it to say, I've been employed at a particular job, full time, since the end of March, 2019, only to be put on extended furlough because of said pandemic, towards the end of March 2020. But, I immediately contacted my previous employer and they took me back with open arms - as a temp employee, with the understanding that when their own staff came back to work, those employees had first dibs on a place with the company and I may have to be ousted at that point. But, here we are in September and there remains enough room for me to stay as long as I wish. And it seems like my furlough is going to last awhile longer, probably through the rest of the year, so I'm very grateful to have a place to be. A place I love, with coworkers and management that I love. Honestly, I'd stay there forever if our family could manage it, financially. But we need more. So realistically, I'll most likely be moving back to where I was when the office opens up again. Or I suppose I could look for something else entirely? But I'm not sure how many well paying places with jobs I qualify for are hiring right now. And, honestly, with my back and general pain troubles, I don't feel like I'm in the best physical shape to be going out and about on job hunts at this point. So, this is where I am and that is most likely where I'll go back to, when able.

Something else I've been doing lately on my "couch weekends" is reading. I haven't read a full novel in months! I used to be in a book club, for years and years, actually, until I decided I just wasn't that into it anymore. So I left. And haven't read since. Except, I have downloaded a bunch of Kindle samples, and I've read all of them. But never continued on with the whole book. I even actually downloaded a full novel, with every intention of reading it. But... eh. No. Not so much. But now? I happened to find a real life, paperback book (imagine! not virtual!) in my mom's office bookshelf that I picked up and started reading, and I love it! It's one of those books that you just want to keep reading and reading, but you also don't want to keep reading because you don't want the story to end. It's called The Other Alcott, by Elise Hooper and it's about May Alcott, youngest sister to author Louisa May Alcott and inspiration for the character of Amy in Little Women. The Other Alcott is a fictionalized account of several years in May's life when she was discovering herself, outside of what it meant to be Louisa's Amy. I've read many other historical fiction novels of this ilk, putting a fictionalized twist on other historically famous people and, I gotta say, it's probably my favorite genre of book. I think... I also like, I guess you'd call them fantasy? Stories that seem real enough but then have some sort of fantastical twist to them. I can picture in my head the cover of one, but I'm sorry to say I can't remember it right now to give as an example. Suffice it to say, I just like to read interesting offerings.

I know there are other things I could do easily enough while I'm not able to physically be up and about much. Cross-stitch, for one thing. I really do like this craft and have created more than a few beautiful pieces in my day. But... I also get bored with them too easily. The one I'm currently in the middle of, that I honestly don't feel like I'll return to, is not colorful enough for my liking. Of course, I knew how colorful (or not) it was when I started it. But having it as an actual piece to work on... it's just not striking enough to keep me interested. And, I'm pretty sure I made a mistake in it also, which really drives me nuts and doesn't make me want to continue on with it. Which in this case is okay, because it was meant to be a wedding gift a few years back (yes, I said years. See? I get bored easily and leave things be too quickly). And I knew the color scheme would be appreciated by the couple getting married, if not me. But now, well, suffice it to say they don't need it anymore. I'm bored by it, the recipients aren't even still together, why even bother? But I could find another piece to start, I suppose. Maybe I'll take a look at my options. We tend to get a Stitchery catalogue every once in awhile. Maybe I will look into this... 

Yeah! I love the idea of being creative. I love to be creative, through my writing, crafting, whatever. I'm so, so inspired by other creatives, and Hubby and I - and I dare say, even Sweetie - love to find YouTube or Netflix videos that speak to the importance of creativity and the profound ways that even the simplest acts of artistry - any kind of artistry - can affect not only your own life, but the lives of others. Many TedTalks are good for that. In fact, just yesterday morning, scrolling through YouTube, I happened upon an interesting title and accompanying thumbnail. Oh, how I could recommend so many videos! Vlogbrothers are always good for some lighthearted yet meaningful takes on all things not only creative but technological, innovative and educational. But back to that TedTalk from yesterday. It stars none other than actor Ethan Hawke. We were dubious at the start, but in the end I can't even describe how amazing this video was. I'll just give you the link here. Suffice it to say, it's well worth a watch (or two or three.)

Anyway, I guess that's going to be all from me today. I'm interested to get back to my book. I'm interested to see if there's a Stitchery catalogue hanging around somewhere in the house. Sweetie is away at her boyfriend's house this afternoon and I've got some time on my hands to just be. Not that her presence really takes me away from much of my own "thing" when she is here. She does her thing, I do mine. We get by. But often I do end up feeling bad that we ended up ignoring each other all day long, too involved in our own interests to say much more than two sentences to each other. But no - she's not even here anyway. No need to feel badly that we sometimes live too much side by side and not enough together. Maybe when she gets home - if it's not too late - we three will play a game, watch a movie, or something. Reconnect. But right now, it's honestly and truly my time. Hubby is both working in his woodshop and alternatingly coming up to cook in the kitchen. I can do my own thing, and I will.

Suffice it to say, for as boring and blah as I could say (and have said) life is these days, in a lot of other ways, it's actually pretty A-okay.

The Same Thing We Do Every Day, Pinky...

 ... Try to take over the couch.

Because it hurts too much to walk.

Anywhere.

If a family member can get me the thing I want, I'm going to have them get me the thing I want.

Sweetie is my best helper and the one I turn to the most.  I'm her Mom, teaching her good lessons on being helpful. Yeah. It's important she help me.

She and Hubby help me a lot. Others are willing to help, but it's them I turn to the most.

My parents? They are always willing to help me. But I prefer not to be asked if I need help. I'll let you know. This is what I prefer.

In fact, this is appreciated all around, from whomever. 

I know what I feel I can do. Even if I do it in a different way from anyone else, it's something I'm up for doing and will go ahead and do it.

And I know what doesn't feel right to do. If I need help, I will ask. And I've got 4 other family members in the house who are happy to do the helping.

I'll ask, I promise. I have asked! They all know this. I'm proud, but not too proud to know when I need others to step in with some assistance.

Anyway, that's really not the point here. I'm here to write about your enemy and mine! You all know him! You all hate him! He's the one... the only...

Pain!!!! (boos, hisses and general sounds of distain commence all around.) 

And I have a lot going for me that causes me great pain.

1) I have a disc in my spine that is slipped, but inward towards my spinal cord.

2) I have another bulging disc.

3) I have a tethered spinal cord.

4) & 5) I have both arthritis and bursitis in my hips. 

Yep - I got a lot of pain. 

But ya know? Pain is funny. Not funny, "ha ha." But funny, "ow, ow." Or something like that.

It's funny because we all, each and every one of us, have had experience with pain in our lives. And there are lots of different kinds of pain, running the gamut from heartache and sadness to sharp, tear-inducing physical pain that drops one to their knees in a heap of sensory overload. 

But none of us, absolutely none, can know how another person experiences pain.

Pain. Its a very singular, lonely experience.

Reminds me of the song Quiet from the Broadway musical Matilda. 

Have you every wondered, well I have.

About how when I say, say red, for example.

There's no way of knowing if red

Means the same thing in your head

As red means in my head, when someone says red.

We can't know if we all see things, visually, the same way as each other. And we can't know how we each experience any of the other senses either. Not smell, touch, taste, sight or anything.

And what feels great to one person may feel awful to another. That's the wonderful thing about us humans. We're each our own person, we like and don't like different things, and we all try to get along and understand each other as best we can, in spite of it.

Or at least that's the idea. Some are not as good at the "understanding in spite of it" thing as others are. But I digress...

Anyway... Pain. No one else but you can feel or truly understand your own pain.

But people - doctors, namely, sure do try. And I don't like that game either. I really don't like it at all.

"How bad, on a scale of 1 - 10, is your pain? 1 being hardly at all, 10 being the worst pain ever."

I can't do it people. I just can't. 10, for example, just is never an option because no matter how badly I hurt, I'm still coping as best as I can, getting through my day as best I can, and I can imagine that, yeah, the pain may get worse. And when it does, I'll continue to cope. 

Or, how about this one, "describe your pain." Uh... Well. It's... ah..." I guess with this one I start by explaining what my pain is not. It's not a sharp pain. It's more like a sore muscle pain. It's a tightness. It's constant, but sometimes much worse and sometimes not really all that noticeable. Depends on what I'm doing.

But then I get to thinking. Okay. What exactly am I feeling here, folks? Yeah. It is a tightness! I cannot move and stretch with ease because there's too much tightness. Okay. If I think of it as a tightness and not exactly pain, it's more manageable.

Sometimes I think of my pain as heat. Okay. It's just a sort of heat I'm experiencing. That's okay. I can deal with that. 

I do legitimately have sciatic pain that runs down behind my right knee almost all the time. Sometimes that's definitely a pretty quick, sharp pain. And when it's not being that, it's just a dull, constant, low-number-on-that-dumb-pain-scale ache thing. 

And, you know?, behind the left knee too. But I think the right knee is more constant. In fact, I can feel it right now. Behind the right knee - a steady ache.

Huh. It's there too behind the left knee.

Depending on what seat I'm sitting in, it's better or worse. Never gone. This chair at the computer is not so great.

Doctors have asked me if the pain goes all the way down to my feel. Well, that's a funny question...

No. It doesn't. But I figure that's because I can't feel below my knees. If I could feel, though, I definitely think I would have pain all the way down to my feet.

In fact, I do have a sensation of.... something... in my lower legs. A not pleasant sensation. This pain, perhaps, that I would feel, if I had the ability to truly feel it. 

So, yeah. If I think about my pain differently, I can convince myself that it's not so bad. It's a heat. It's an ache. It's a tightness. It's a constant annoying presence. But I'll get by.

I think that's why I hate the number game so much. I do try to think of my pain in different ways and I do manage through my days as best I can. If the pain gets worse, I just adjust my thinking and I'll get by.

Probably what's worse, though, is all the pains together. Happening at the same time. I do experience that and it’s awful.

The lower back. An achy tightness. The sciatic pain. A constant ache with occasional sharp intervals of a... heat-like pain, maybe? And when I say "heat" I don't literally mean a rise in temperature. It's just my way of trying to explain. Trying to cope. 

Anyway... The back and the legs together. Which is often experienced. Is... no bueno. 

I am on a path towards helping to get this resolved, though, through a nerve stimulator. But they haven't called to schedule me yet. Still waiting. This whole idea is a post topic for another day. Not something I want to get into today.

And I do wear a (store bought, generic) back brace regularly. Every day to work. But I tend to take it off as soon as I get home. It’s too hot in the summer.

And I see a chiropractor twice a week. She wants me to wear the back brace all the time. Even when sleeping. She thinks I do do this, actually. I did for a bit. But, again, it’s summer now and way too hot for that. But I do wear it to work. 

I take over-the-counter pain meds occasionally. Not often. But when the pain is worse than usual. 

So I do have my ways of managing the pain. I’m not just sitting here being miserable with no attempt to fix it. 

Today. Today is Saturday. A Saturday like any other Saturday. Or Sunday. Or evening. Or early morning before work. 

Today (once I'm done typing this, that is. Yay! A change up from the norm!) I sit on the couch. Get up to pee. Get up to get some very easy-to-gather-and/or-prepare food. Have some wine later. And I just try not to be in too much pain.

I sit on the couch in particular way. With my feet up on the coffee table. This feels better on my back than with my feet on the floor. But when I get up from the couch, the fronts of my legs hurt from having been in this position. But, again, if I don’t do it, my back continues to hurt too much while I sit there, 

It’s a no win situation, really. But I try to make the decision that cultivates the least harm. 

I often don’t know how successful I am at that. But I try.  

Hubby is gone today for much of the day. During the week, he works second shift. On weekends he grocery shops, because I can't. Granted, he's also the family chef, and always has been (me with pain, or not), so he knows what to shop for anyway. Otherwise, if he's home, he's often in his basement woodworking workshop, "making sawdust", as he says. 

He's not around much, is what I'm saying.

Except weekend evenings, we three have our time together then, watching a movie or catching up on shows, playing a game. Something. It's nice.

But I do miss having more family time together. I would love to go out on an adventure some weekend with Sweetie and Hubby! We, historically, love weekend adventures! I suppose we still do. Yeah! We still do!

But... We've got things going against us, man. 

This Coronavirus for one thing. Not even going to get into this one. Maybe sometime. Not now. Look it up if you don't know. But... you know. We can't safely go anywhere. 

Love to go to the museum! Museums are either not open or they're just not feeling like a safe place to be these days. 

Love to take day trips! Yeah, but what about stopping to pee? We could take food with us... but we can't really go to any destination without fear of intermingling with others at some point or another.

Oh! We could go for an easy hike in the woods! Geocaching! Yeah! That's Hubby's thing! And Sweetie enjoys it too! I enjoy the family time together, the peace and calm of nature. And... oh. Not the walking. Once upon a time, just a few years ago or so, I could at least manage a walk decently. Support from Hubby. Walking poles as support. Regular sit-down breaks. Yeah, I managed simple walks just fine.

But now? Uh uh. No way, no how. 

Which, you know. It's totally understandable. No one is expecting me to go hike in the woods with them at this point.

But I'm thinking... like, I can't do anything that requires any amount of walking. I have to psych myself up just to go to CVS or Rite Aid for the one or 2 products I need, for goodness sake. What if it's a long check out line? I can't stand there waiting for more than a few minutes. And I'm definitely not going to any larger grocery store. I wouldn't even be able to get half way through the produce section before crying (literally) "uncle!" Thank goodness Target has that little ride-on electronic cart thingy. That thimy is a life saver for me! Love it! (Not that going to Target is anything we are likely to do much of these days. Thanks, Corona.)

So, you know... going any actual place is not really happening.

And just being a passenger in the car as Hubby drives around - even to beautiful, semi-far-off, new-adventury type places, it's just so... tiring. We did this early this summer. it was exhausting. We came home and passed out. Him in his Laz-y-Boy, I on the...

...you guessed it.

Couch. 

So what do we do? As people who really, really want to get out and do something, but really really can't for not just one (globally pandemic-y) reason, but 2? Or more? It's just... Exhausting.

Like this pain. I manage it and deal with it most of the time pretty well. I am not a complainer, so I'm not bothering others with any constant info about how I'm feeeeeeelllling.... I'm trying to be a good mom, a good wife, a good family member. And it's all just...

Exhausting. Bringing me to tears from time to time, exhausting. The pain - the constant pain, the fitfulness, the social and political climate of the world... of the US in particular... the not being one to complain because, really, what good does that do anyway. it's just...

Exhausting.

So.

That's it. It's lunch time now, as I write this. I'll get up from the computer (Thank goodness! This chair does not feel great on my back and legs) and find me some food. Then I'll go back to my couch. Work on some crosswords. Wait for Sweetie to finish her shower (that will take awhile, I promise you) and then she and I will watch something fun. Maybe. That will be fun. Maybe.

Eventually Hubby will come home. I've asked to have turkey burgers and corn on the cob tonight. So, hopefully he stops at the store on his way home for those items. 

We'll have a nice night together. I think we may watch Hamilton again. For the 5th time. Yeah, we really love it. :)

And then - sleep. 

And then...

What will we do tomorrow, Brain?

The same thing we do every day, Pinky. 

Try to take over the couch. 

Watching My Stories...

 Hello? Hi? Is this thing on? Yes?

Ahem...

Hi there. How are you? Me? I'm... okay.

My brother and sister-in-law visited last night. and my SIL asked me just that. And I answered... just that.

Okay.

Which she questioned, and I think I probably said something like. "Yeah." 

But Hubby elaborated for me and told how my back is always hurting me all the time.

And SIL asked if I ever started going back to chiropractic care.

"Yes, I go all the time. Twice a week for awhile now. Doesn't do a darn thing."

To which Hubby elaborated that, "Well, it's helping structurally. But doesn't help with the pain."

I did then mention that I'm in line to get a nerve stimulator placed.

To which my mom said she/we've/I've heard from lots of people about how much this has helped them. "In fact, just today, I was talking to..."

Oh, good, great! SIL is happy for me that I'll have some relief once this procedure is done.

Why am I telling you all this? Because... did you notice how many people it took to tell MY story? Both Hubby and Mom filled in the conversational part of this back and forth, telling what I'm going through and what MY plan for relief is.

And, in a way, I'm grateful for this. Go ahead. Speak for me. It's okay. I'm used to it. 

Another example...

Visiting my in-laws. Just the two of them, and the 3 of us. No other distractions. Just sitting and talking. Except me. Not much.

Except, hey, I do have this thing to mention. Here I go, mentioning it...

...And then Hubby does the "Oh yeah," thing, and goes forward with the story himself.

A little while later, the same exact thing. Except this time it's Sweetie taking the reins from me, galloping along with her version of my story.

Granted, this was a month or more ago and I have no clue at all what either story I was bringing up at the time was about. It very well could have been - probably was - a stories that "starred" Hubby in the first one, and Sweetie in the second one. So, sure. They may have been their stories to share. I don't know. But maybe they weren't? In any case, I presented two different stories/conversation starters and both times they were taken from me by others.

And, eh. That's okay. I guess. Go ahead. They're better conversationalists than I am.

(which is saying a lot, given Sweetie's Autism diagnosis. A diagnosis primarily known for its antisocial tendencies. And, yes, she is definitely antisocial.)

I could tell you all sorts of other examples of this. I couldn't tell you how many times, for example, my large family has been gathered and something comes up and I want to say something relevant to whatever is being said, but the back and forth banter is just so on top of each other that there's no butting in with my maybe/maybe not interesting addition to the topic. So what do I do? I end up raising my hand, like I'm in stinkin' 3rd grade, to let people know that I have something to say. So everyone stops. And waits. Waiting for me to say my certainly highly interesting and witty comment on the overall conversation. Which now, in this so-quiet-you-could-hear-a-pin-drop turn of events, seems to be anything but interesting and witty. Pretty stupid, actually. Aw, never mind. Go back to what you were saying...

I need to take a course on how to be a good conversationalist. Back and forth with one or two other people? Fine. As part of a group where we're really working together to solve an issue and hear from each other and work something out? I've got it! But just casually hanging out with others.... in a group larger than 4 or 5? They talk. I listen. Or one or the other of them "helps" me out by expanding on the story I started.

And I let them. And I don't mind.

Well, you know what? I kind of mind. 

I'm the youngest in my family. So, even though I'm now in my mid 40's, I'm still seen as the baby. Also, we 3 happen to live with my parents for now. This doesn't help me gain any headway as being seen as my own independent adult. I'm a naturally quiet person. I'm a "do gooder" too. I tend to always want to be doing what I should be doing, so that others don't think poorly of me. All this. It doesn't help. I'm a much better writer than I am a speaker. I have never learned to have a great conversation with anyone. Or, specifically, with a group of anyones. 

I need to learn.

I want to learn. I need to tell my own stories instead of watch as my stories are told. I know that's why I like writing so much. It's just me, telling my stories. No interruptions. No judgement. Just me getting to say whatever I want to or have to say, for as long as I want to say it, any way I want to say it. Absolutely freeing. 

But I also want to learn to feel this freedom of my own speech. My own voice. It's something to work on, for sure.

I spoke to Hubby and Sweetie this morning about all this. And they both had some great bits of advice for me to practice. I'm sure there's at least a few TedTalks on the subject too. 

The first step is knowing, right? I now recognize how much I let others tell my stories for me. And how easy it is for me to let them take the spotlight as I sit back, happy enough that I at least brought something up for others to chat about. "The Prince of Tides... it's neither about Princes nor Tides. Discuss." 

But that's all about to change, people! I'm on a mission to learn a new skill. Talking! Chatting! Conversating! I can do it! Woo hoo!

But first, my back pain? Mentioned at the beginning of this post? Yeah. I really can't do much of anything, physically, while in so much pain. Soooo... I feel like I've got really nothing to offer in terms of great story telling from my own life experiences. Not a lot going on for me these days.

I’m sure I could write about it though. I’ll plan to do that soon. 

And I'm getting that nerve stimulator! Sometime! Soon? Who knows?! I'm waiting for the call to schedule. 

Just you wait, though. When I'm pain free (or at least feeling less pain) I'll be back on the move and back to doing things!

Oh the places I'll go! Granted, with Hubby and Sweetie. So if/when I have a story to tell, they will have had been certainly involved in the happening as well. 

But, watch out! Yeah, I've got a story. And it's mine. All mine. And you're about to hear about it!

My way. That's right. 

Back in the Saddle

Sitting here at the computer desk. A desk Sweetie has more or less claimed as her primary seat in our part of the house. Listening to an episode of Andy's Summer Playhouse's podcast, EyeToEye, as I try to get myself back into writing. I've got the content, albeit changed drastically from what this blog used to contain. I currently have the time to devote to writing. I just have to buckle down and do it. Dive into a topic and go. Let's go...

I guess I can, and maybe even should, first give a brief update on Sweetie. When last we gathered together here at Sweetie & Me, we were just celebrating her 15th birthday. Today she is 17 and a half and has finished her Junior Year in high school. However, in a fascinating twist of events, she will be entering Junior Year 2.0 at the end of August. Since she entered her STEM charter school at the start of 8th grade, not 6th grade which is the first grade available at Junior/Senior High School, she was a little behind in credit accruals. So she basically has 3 semesters of credits still to take in what would only be 2 semesters if she moved on to Senior Year. So - she's a Junior again. With a fair amount of room for Electives and study halls. It will be good for her and she has a great sense of relief in this taking of time. No need to rush toward graduation. This is not a race. It's all good. 

Another Sweetie snapshot to take a quick look at. Just over 2 years ago we complete a year-long process of moving towards a significant diagnosis for her. Just over 2 years ago, Sweetie was officially diagnosed with High Functioning Autism, Executive Function Disorder, and a tendency towards anxiety (but not quite "there" enough to be diagnosed with an official Anxiety Disorder.) The previous year to this, she was diagnosed with ADHD, Combined Form. These diagnoses did not come to myself, my husband or Sweetie herself as a surprise, and they have actually offered great opportunity for growth and development - for all of us. I won't get into any of these details now. Maybe not ever. Who knows. But just to say that Sweetie has dealt with some struggles her whole life, struggles that are now defined. This definition has given her, and us, a jumping off point for dealing with them in healthy, useful ways. She's doing beautifully and has grown into a truly insightful, caring, truth-seeking young woman. A young woman who learns more and more each day about what is best for her understanding of the world around her, and how to communicate her needs to others in correct and useful ways. She's doing great!

As for me. As for this blog. I think we're going to see a significant shift here in post topics. Not only because Sweetie is 5 months away from 18 year old adulthood. She certainly doesn't need me sharing her life's details with the world anymore (I do that enough, still, on Facebook, anyway.) But because I find my life's changes and personal care needs changing - needing more attention in my own right. So, yeah. This blog may be titled Sweetie & Me. But it's time. Time to focus on me. Looking forward to doing that here. Letting my readers know what it's like for me currently as a physically disabled mom... of a physically able child. You got years of me going on and on about, really, just typical "mom stuff" where the disability hardly reared its (increasingly ugly) head. But now I'm older, maybe wiser, and - as I said - in a bit more of an "ugly" way in terms of my disability. (No huge worries. It's just that getting older sucks. Getting older with a physical disability really sucks.) And I'm feeling I need to get back to writing.

Writing has always made me see things more clearly. Helped me sort things out. Helped me find my paths. And lately I've been feeling trapped. Trapped in the house, trapped in my bodily aches and pain, and trapped by my thoughts. That I want to get out. I want so much to write! But I also have a sense of... is it fear? Privacy that I want to maintain? Yet, at the same time, wanting to share my story, share my truth with my readers the best way I know how. Yet, at the same time, not overly worrying certain potential readers of mine with the way I see my life. What I live with everyday. It may be too much for some readers. Readers who are close to me in real life. And so, to not concern anyone unnecessarily, I haven't written. I don't write. And, in not writing, I'm doing myself a disservice. Like I said, writing is and always has been a sort of life saver to me. My written words bring me back to a sense of calm, a sense of reality that is much more manageable than floating disparate thoughts and feelings floating around my head, untethered. I need some tethering. I mean, other than the spinal cord tethering I've already got going on. Which I certainly could do without, actually. 

And so - screw it all! I'm going to write. At least for myself and for a small, trusted army of interested readers. And by "readers" I mean, so far, just one (other than those who happen to stumble upon my blog without any particularly advertising of it, that is.) But I know this particular reader will hear my truth in not only what I'm saying it, but how I'm saying it. Sometimes (a lot of times) it's the craft of writing that's more important (or at least equally important) than the writer's topic of choice. And that's what I need my readers to know and understand. Yes, I may write a post about my loneliness during this time of Covid 19 pandemic (oh yeah, that's going on too - I haven't mentioned yet.) But it doesn't mean that my readers need be concerned for my wellbeing or that I've gone off the deep end into a lonely abyss. I may need to write about my back and leg pain. Yo - it's pretty bad. But it doesn't mean my readers need to necessarily treat me with careful kid gloves in real life, not letting me do things for myself and live as normally as I am able. 

Anyway, I just need to write. And I'm happy to get back to it. Thrilled, actually! It took some time for me to dive into this post and start feeling comfortable at the keyboard again. But here we are, and here I am getting my groove on and feeling pretty darn comfy already. 

Looking forward to this new path that my writing is helping me locate and start down. Looking forward to sharing with my small but mighty audience, and seeing whom and if I want to share with others as well.

Here's to a new start! Let's go...