I decided to start this blog category for the purpose of educating the curious & possible future candidates of this implant I've recently had put in my back. I get a lot of questions since this all began (months of preparation before the actual implant) and people who are curious because they or some one they know have chronic pain like me. It's one thing to read about things like this from their makers. It's another to hear it from some one who is personally acquainted with the device. So here I am. I'm your guinea pig.  Anyone who knows me already knows my pain history. I won't get into too many details because this blog is about the implant. But I'll just give a brief description for education purposes & why this device might be needed for others.

I had 4 back surgeries previous to the implant (5 now.) I had several damaged discs to say the least. I also have Fibromyalgia and Rheumatoid Arthritis, both progressive autoimmune disorders. Needless to say, I live in daily pain. I've had physical therapy, multiple surgeries, and multiple injections of the course of a few years. I was also on a very strong regimen of narcotics for two years prior to my back surgeries. It was the first attempt to avoid the surgeries in the first place. But I couldn't accept the medications for the rest of my life because I felt it changed who I was as a person. It didn't make my quality of life better if I wasn't actually living my life as 'me.' So I took myself off the medications (under Dr. supervision of course) and went ahead with other routes. The implant came after all attempts at everything else. Keep in mind you don't have to have all my conditions to qualify. It's for chronic pain, period.

After months of trial and error with injections I had a consultation with my pain management Dr about the implant, and then they set a date to do what is called the "trial period." (The trial lasted about a week and a half.) This was a small procedure with light sedation (similar to injections) where the Dr put a temporary set of leads inside my spine.

These are the actual set of temporary leads that were put in my spine for the trial period. My Dr told me to keep them as a souvenir. He's funny like that. 

The leads were placed inside my body on my spine and then had cords coming out of my back that were attached to the leads. The cords were sewn in place on the outside of my body (so that the leads wouldn't move during the trial.) The cords were then attached to what I called the dinosaur. Think of a really giant pager (if you can remember what those were.) This was my dinosaur:

You can see a bit of the cords on the bottom there. Those cords are the cords that came out of my back (attached to the leads) and led to this dinosaur of a remote that clipped to my hip/clothing (just like a giant pager.) But this device controlled all the settings. Oh that reminds me, some of you might be wondering what the neurostimulator does exactly.

It is a device (as we've established) that is implanted in your back and attached to leads that are attached to your spine, and the device sends impulses through you body (upper or lower, depending on where you get the implant.) If you click here, this will tell exactly how it works to stop pain. (It will open a new page in your browser.) Okay... back to the trial, they bandaged me up like a mummy... well only my back, but I felt like a mummy. Here were my bandages on my back:

I had impulses going all through my lower body (I am getting another implant in my upper back in the future. But most people don't need one for the upper and lower lumbar like me. I'm just a freak of nature.) The cords coming out of my back are neatly hiding under all that mummy wrap. Here's the downside, I couldn't shower for the whole trial. Since the cords are coming out of your back (literally) you can't get anything wet. You have to sponge bathe or squat under the tub faucet like I did and do your best. It was not fun. But worth it.

So a week and a half later, the Dr removed my leads (no special procedure, he did it right in the patient room.) Then I had to take a course of strong antibiotics to keep safe from any possible infection due to the work on my spine, and we set the date for the implant for about 6 weeks later (they have to let your spine heal from the trial and make sure there was no infection or bad effects from the leads.) (But in order to qualify for the implant after the trial, you have to have received at least 50% or more pain relieve during the trial, FYI.)

6 weeks later (roughly) it was surgery day. This is a major surgery and they will cut through a lot of muscle and tissue to get to all the places they need to put the implant in. Here is a pic of the implant (I borrowed it from this article here, where you can also get more info on the Eon:)

The surgery was about two hours long. I was sedated but not completely out while the Dr put the leads in (because they needed me to voice the feelings of the stimulation as they were installed.) And then I was put completely under while the implant was implanted into my body. I woke up in the recovery room. Here I was right after I woke up. I was saying, I am totally stoned... Ok, I was really saying, "Thumbs up. All is well" to all my friends in the cyber world. But I was in fact, totally stoned. I had this REALLY bad headache when I woke up. I've had spinal fluid leak headaches before, and that's what it felt like. So they put some strong narcotics into my IV until my headache was gone. That was on top of all the meds I received during surgery. So ya, I was a little out of it. Don't judge me.

Then my best friend (you too will get a best friend if you ever have one of these) started to program my device. You will receive said best friend during your initial consultation for the neurostimulator. He/she (I had a she) will be a St. Jude rep (makers of the Eon) that will follow you all through your neuro journey. They will call and/or text all week during your trial and check on you. They will make themselves available for questions at any time (texting is always fun at midnight.) They will be at all your appointments that involve the stimulator. They'll be your comfort, question answerer person, and anything else you need them to be during this series of months. My personal BFF even served as a personal comedian and flattery filler. Because she was totally impressed with me having 6 kids and being the size I am. She just couldn't get over it. She loved to play a game with all the other medical staff and ask them to guess how many kids I've had.

They will even be with you in the OR during your trial procedure and your surgery. You want them there too. Your BFF has a master remote, and they can control all the impulses your body feels...they can even turn the impulses up REALLY high. Be sure to stay their BFF!

Okay, I've decided to cut it here for now and write a part 2 of the blog. I will pick up with what happened after surgery & explain all that good stuff in the next blog (ie, what to expect during recovery, how long, etc.) This is enough info to process for now. In the meantime, you can read all about this nifty device at Poweroveryourpain.com

For those who are not familiar with the term "Aspie" I will enlighten you. It is a term given to people with a syndrome known as Asperger's Syndrome. It is a high functioning (for him) form of Autism. (He is too intelligent for his own good!) For many years I had never heard of it and neither had he. We've been together since I was 15, and needless to say, it's been one big major adrenaline rush of a roller coaster ride in our relationship. If you're not aware of what a person with AS is like then you can guess if you've been around him long enough, or read some of the symptoms I'm about to list:

The biggest factor in people with AS is that they do not comprehend or 'pick up' on what society would consider 'normal' social cues. Ex; They blurt things out at inappropriate times, and most of the time don't even notice the strange and confused looks on people's face when they do it. They don't read body language and expressions like 'normal' people do. They don't understand them and tend to lack things such as empathy when it's typically expected. They can come across as being very callous because of this. They don't usually 'fit in' anywhere, work, school, etc... They're often misunderstood, perceived as lacking common sense because of their lack of 'normal' social skills when in reality, they're gifted with intelligence. (What is normal anyway?) 

They're introverts. They don't like going on camping trips with the guys. They don't like going to the family BBQ's, church gatherings, work parties, etc. They are most happy in their own home, either alone or with their immediate family (and they can be perfectly content completely alone.) This is due to what is known in autism as a 'sensory overload.' Social gatherings as these trigger the sensory overloads. Imagine your computer when it crashes because it's been 'overloaded' with a worm or viruses, or even just too many downloads and uploads. It shuts down when it  gets too overloaded. Autistic people in general are wired differently than 'normal' people. Sights, sounds, touch, all the things we use to communicate is in overdrive for them. It's like some one just turned up the volume all the way. and everything our bodies sense is intensified for them. Social situations create stress and anxiety for them that will even bring on physical ailments such as fatigue.

They don't care for human touch. Again, it becomes a sensory overload issue. Something as simple as a touch just rubs their nerves and sensory system the wrong way. They prefer not to be touched because of that. They're somewhat accepting of it with a spouse or close loved one, but they also have a problem with germs. So they're not likely to be so accepting of others touching them.

These are just a few examples to give you an idea of what life living with some one with AS might be like. Put yourself in a relationship with one, and it can turn into an epic failure. Aspie's don't like to cuddle. If you try to sit near them and cuddle, they'll probably even get up and move (they will.) They won't want to go to your best friends BBQ with you or on the church camping trip. When you're excited and want to tell them all about what made you so happy, they won't share your excitement with you (that empathy thing I mentioned.) In fact, they might even get up while you're mid sentence, and just walk out of the room (I know this from experience.) They won't even show excitement when their wife gets published in a book ;) Oh, and they have very frequent mood swings, and they are unpredictable.

They can be quite neglectful to say the least. (Remember, they just prefer to keep to themselves, even in a relationship.) But when they love some one they are very loyal and committed to that person, and they love them very deeply. They just don't show that love. You will get your feelings hurt a lot if you're with an aspie and don't understand them. I spent many years living it. You will feel alone, even when he's there, if you don't understand him. It can be an extremely miserable and lonely relationship/marriage for the non aspie spouse. It is a constant roller coaster of highs and lows. They tend to be obsessive for a period and then begin to obsessive over something else. This is to include their spouse. They are very loving and in tune to the relationship in the beginning. But with all things they obsess over, it does come to an end and they might get in to video games or puzzles. There's really no rhyme or reason to the things they might obsess over. This is their downfall in relationships. The non aspie spouse has suddenly gone from a blissfully loving relationship, when the perfect spouse loved to listen to her, do anything for her, and just became everything a best friend could be, to feeling alone, together with this now total stranger. That's what happens in the beginning anyway...

I'm barely scratching the surface here, but I needed to paint just a tiny picture of what being married to some one with AS is like and what an aspie is like in order to explain the rest of what I want to say. You see, Dale and I have struggled for nearly 15 years because of this disorder. As teenagers we were always on again, off again, on again off again... and I always had the same reasons for 'hating' him again every time. "You don't act like you love me. You don't pay attention to me anymore. You're mean and critical. (I didn't mention their negative nature, but they can be very cynical and critical, that's apart of their callous seeming nature.) You never show affection..." etc...etc... For years, it would be the same thing, over and over again, different situations, but always ultimately ending (on my part) for the same reasons. I always felt lonely and unloved. And anyone married to an aspie will go through this.

Once I realized he had the disorder however, I began to learn everything I could about it. I googled everything about it. I bought and read books, and even cried reading the books on marriage with an aspie because it felt like I had been reading our entire relationship together. They were more tears of relief though. I learned that I wasn't actually alone. And I learned about him and why he was the way he was. I began to come to grips and accepting this disorder. Once I understood him, I was able to understand that he really did love me, and so I stopped feeling the hurt for awhile. Because if he didn't love me he wouldn't be here 6 kids and 15 years later with me.

And so instead of trying to 'change' him like I'd been trying for years (really just trying to make him love me, in my mind), I began to change myself. I thought, okay, I have some tools now. I 'get him.' So I can adapt to him now and understand that he still loves me, even when he walks out of the room when I'm in mid sentence. Because he has Aspergers. And once I brought it to light and he learned that he had it, we both began to use it as a crutch. He finally understood why he was so different and couldn't seem to fit in anywhere in life. He would say to himself, "oh well, that's just who I am, I have AS." So he felt justified in who he was and the things he did (or didn't do.) And I too would blame everything on the AS. It worked for awhile. It was a great thing for me to learn all the things I did and finally truly understand him. I made great attempts to adapt to his disorder and just accept that it was our life, and that was how it was going to be for the rest of it because he had a true medical disorder.

But then I found myself struggling again. I'd go to marriage classes alone. Read books on love languages and marriage, and yada yada yada... I tried to talk him in to marriage counseling... I was frantically trying to hold together a marriage that seemed to be falling a part, and he had no idea it was even broken. I was doing everything I could to change myself so that I could accept who he was. The problem with it is that I was sacrificing my own need for love and human nurturing in order to 'adapt' to his disorder. But by the time I figured that out, it had already become too late.

I became numb. In order to adapt to some one that doesn't need or give affection, or any kind of nurturing that humans need, you have to be numb. But that numbness turned into lack of love all together. I no longer felt any kind of love towards him at all. I was suddenly resentful, hurt, lonely, and I was tired of feeling those things. I was tired of fighting for something that was never going to change. He had a true medical disorder. How could it change? I came to a point where I was just done. I had asked myself a question, "Can I live without being loved the way I need to, for the rest of my life?" My answer was no. I wanted out. I had respect for him. But I knew that I couldn't spend the rest of my life being lonely in the same house together. It was a basic human need, nurturing that an aspie doesn't give.

I told him my feelings. It was a course of weeks, talking, explaining, and even planning. I was making plans on how to support and live my own with my kids...where would we live, getting a job, etc... But when it initially went down and I told him I didn't want to be with him anymore he said to me, "I don't want you to go. I haven't fought for you in the past, but I'm going to fight for you now." (Remember how I said they don't mind being alone? I was always the one doing the breaking up in the past, and I was always the one leaving. He never tried to stop me, even if he didn't want me to go. That's just how an aspie is.) I told him, "I think you have good intentions and mean what you're saying, but I've done this too many times before. I know how it ends. It'll be good for a couple weeks (remember how they get obsessed), and then things will go back to the way they've always been again." His heartfelt words at that moment weren't enough to change my mind anymore.

I didn't have plans of leaving right away. There was no physical abuse or danger to anyone's life (Aspie's are also very peaceful and non-violent.) So I didn't want to take off with no plan, a place for me and my kids to live and no way to support myself. I just began slowly making those plans. I didn't want to jump out of the plane without a parachute. But even though he knew my intentions, he still kept fighting. A couple weeks went by, and when I expected him to go back to his 'normal', he didn't. A couple weeks turned into a month, and at that point I thought, ok, he's making a conscious effort so I'll 'try.' But it half-hearted. I felt nothing, at all. I was going through the motions. Because I had already made up in my mind that it was just never going to work. He eventually noticed that I was going through the motions. He said to me, "...it's like when I try to hold you, you just can't wait for me to go away." He was right. I couldn't wait for him to go away. I had become so numb I no longer even desired to be close to him. But those words became a very defining turning point for us. Because the first thought that came to my mind was "Wow. Welcome to my world all these years." At that moment, it went without saying, that we both suddenly understood the other for the first time. He felt my hurt and rejection for so many years. And while our reasons weren't the same (me having numbed myself and him just having AS,) I felt his feelings of not wanting to be touched. While I hadn't intentionally been numb or meant to make him feel what I had always felt, I found a sense of relief knowing that he finally understood what I'd been begging for, for so long. It had finally been recognized and acknowledged. That made a difference for me. I needed it.

I realized that in all my planning, I hadn't thought to include God thoughts. And the thoughts of his that came to my mind were, "With God all things are possible.... even a marriage with an aspie." Dale kept fighting. I was still very reserved as I spent many years losing faith and trust in his abilities to give me the love I needed. I still didn't trust it. That trust needed to be rebuilt. Dale finally starting attending the marriage classes I had long given up on. I had begged and begged him to go in the past until I just stopped going myself. But suddenly he just decided to start going, and I didn't have to fight to get him there. I began to see true changes in him, not necessarily anything we were learning in the classes, but everything as a whole. Having learned everything I could about AS, I knew how hard it is for him to sit in group settings such as the marriage classes. I recognized the sacrifice he was making just to do that. I knew that social situations like that overload his sensory system, causes him anxiety and makes him uncomfortable, and so it meant that much more to me that he was going. Because of that, I didn't mind so much when he didn't want to go to the last social shin-dig with me (my brothers homecoming.) I didn't feel unloved when he said he didn't want to go (like I would've in the past.) But he was respectful even in that. He would've gotten an attitude in the past to let me know he didn't want to go. But this time it was just, "Will you be upset if I just stay home?" I said "no'' and it was sincere.

He has consistently been showing affection... from listening to just giving me a hug for no reason. I know that those things are especially challenging for him too, more so than some one that's just having to learn their spouses love language. He has to do more than consciously make the effort. He has to fight against a medical disorder that not only doesn't give him the natural ability to communicate in these ways, but even causes physical problems that I know are uncomfortable, anxiety, and an overload in his nervous system that isn't wired like mine and others. But he does it anyway. To me, this is the equivalent of some one who runs a marathon with a missing leg. Those people usually have a prosthetic device to help them achieve their goal, because even though they can't do what others can naturally, they don't let it stop them from achieving what they want out of  life. That's Dale. That's what he's done for our marriage. He has put on a 'prosthetic device' and put his heart and soul in it, and that makes all the difference.

I finally put my walls down and trusted in him again. He worked to get that back too, and he kept his word. He fought. I recognize what he fought to get there too, and it wasn't just me. It was Asperger's. He will always have to live with it just like some one with one leg has to live with that. But he's proven that he won't let it get in the way of his life anymore. He overcame that obstacle and has learned how to nurture despite it. It's become a marriage of give and take now, with a mutual respect and understanding of each other's needs. I've always been proud of him even when I didn't feel too loving towards him. But of all the things I've been proud of him for, I've never felt more proud of him than I am right now. He is beating all the odds that are against him. He's showing me and every aspie out there, that there is no excuse not to give your spouse the love they need. Where there's a will there is a way. He is an inspiration to me and I feel blessed to have him.

I now have more than hope for the rest of our lives together, I have joy in knowing we get to grow old together.