So… We’ve received a lot of Messages asking us if we’re okay and “where the heck have you been? We are “okay”. I’d LOVE to say we are AWESOME like normal. And in certain arenas we are. For sure. The back pain issues I first spoke about 2 years ago have continued to get worse. So “where we’ve been” is doctors, Chiros, surgeons, pain management centers, imaging centers, etc etc.
For those who ask…. My once herniated discs in L2-L5, which was causing all that pain, turned to ruptured discs about 9 months ago. The pain got worse and the legs got way worse. Now they’ve turned into collapsed discs. And the pain is way way worse. And so are the legs. For ease of understanding, there are no more discs in L2-L5. They’ve flattened. It’s bone against bone. And the gel that once filled the discs has now filled my spinal column and foramin pushing against a whole host of nerve bundles in the lumbar area and the ones specifically responsible for our legs.
There’s foraminal stenosis, as one would guess, which just means those holes in our back bones that all our nerves slip in and out of, are filled with disc gel and are being squeezed. The back pain is beyond excruciating. In addition the leg pain is as well. But it’s more of a weakness, burning, tingling, on fire, and numb feeling.
What it translates to is I now limp on both legs, which I admit makes me feel sorry for myself sometimes and embarrassed. I also kick things over all the time as I lose more and more control of my legs, and I occasionally fall over. It definitely sucks.
The X-rays show the levoscoliosis that has formed — the spine twisting left to right to left etc constantly overcompensating everytime another disc ruptures and starts to flatten. Doctor says it’s a chicken or the egg dilemma: is the levoscoliosis causing the discs to rupture or are the collapsed discs causing the levoscoliosis… they all say it doesn’t matter at this point.
There is some good news in all of this. For one thing, my outrageous writing 5-8 songs a week has returned. Most likely because there’s a lot now that I’m not able to do. Songwriting isn’t one of them. I haven’t written at this level or this speed since ‘06-‘08. And it feels awesome.
Another thing, in late summer things suddenly changed for the worse. One minute i was normal me, sort of, not really i guess, but “okay”, just in a lot of pain and moaning groaning and screaming a lot. Then suddenly the pain became too unbearable and I became bed ridden. Couldn’t get out of the horizontal position, just lying there with tears steaming down my eyes moaning. This was the rock bottom.
Then something miraculous: friends heard about it and sent us their medication. Not kidding. Doctors in NY are absolutely terrified of prescribing certain medicines. And they tell us that. Literally say to us “truth is son we are terrified of prescribing the kind of medications YOU need right now. We’re too Afraid of losing our licenses.” So instead they overcompensate and load you up with a bunch of meds you don’t need and that are much more dangerous for you. They freely admit that’s what they’re doing. They blame the New York Board of Medicine.
So people like me just lie around horizontal unable to stand or sit…. moaning or screaming in pain all day every day. It’s like living in hell and having nightmares on top of it. But then in come these meds from friends. Suddenly I was out of pain. I could walk. I could sit at a desk. I could bend. It was AMAZING. A true miracle.
You run out of these meds of course. So people like me and millions of other Americans are forced to buy them from Canadian or British pharmacies. Which don’t go through your insurance obviously. So it’s expensive as hell. But you get your life back. That’s an issue. It’s happening all over the country to tens of millions of Americans who wake up “sick” one day. A topic in and of itself.
Where WE are now is in a race against my legs continuing to get worse and “losing mobility” or what they like to call “becoming non-ambulatory” which is a fancy way of saying “not be able to walk”. So we have been interviewing surgeons like crazy.
The problem is I have what is called a “spinal deformity”, referring to the rollercoaster my spine has turned into from the levoscoliosis. So we need what’s called a “Spinal Deformity Specialist” to do the surgeries. There are about 3-5 surgeries I need depending on who you talk to.
But every surgeon we’ve gone to has declined to be the one who’s going to do it. Which we totally understand. One surgeon, the top at his hospital, the top in his field, told us he couldn’t guarantee better than a 50/50 chance of improving me after surgery and to keep looking. another one gave us the old “you’re really young to be getting these surgeries. Let’s give it some time before we go putting you through all that.” We’ve heard this one before. 2 years ago. If we hadn’t listened to him, I’d be in a lot less pain and I’d be walking like a normal person. They say this because it’s a big task, with a big risk due to my spine. We get it.
So our goal, our primary, our mission, is to just find ONE great surgeon who says “Yes, I think I can do this”. That’s it. It’s been harder than we thought. We’ve met with a lot of them. But we will keep on, stay positive, and we will find this one awesome surgeon. And we will resolve and heal my back and put this behind us. I see it. I feel it.
If you want to help in consciousness, use whatever tools you feel comfortable with, Prayer, Primaries, visualizations, incantations or affirmations, positive thinking… toward:
- We find the perfect surgeon for the job and he does it without any glitches and I’m healed.
- 2. Our insurance company stops denying everything our doctors and surgeons request and stop wasting everyone’s time and energy. They are monsters. We really need them to step up now. Before it’s too late.
- Our doctor starts coming around and prescribing the right medications to treat what I actually have. Excruciating Level 8-10 chronic pain. (Last week he tried to give me an extremely toxic med for MS patients who have seizures! Not kidding. Has absolutely nothing to do with what I have. And he knows it. Told me. But like all of them, he’s scared to death to prescribe anything for pain etc.) BUT HE actually did say in our last appnt that THAT IS exactly what I need and he’s not averse to prescribing it and he will “soon”. So we wait for “soon”….
In the meantime Princess Little Tree has been AMAZING through this. She’s been strong, supportive, resolute, any and every positive adjective you can think of. But she has her moments. She cries a lot. She’ll see me hobble into the bedroom like an old man and just start crying. I can’t wash my own face — bending over like that kills me. Tying my shoes is excruciating. Or maybe I’ll kick something over without knowing it. It’s all a LOT for her to bear. Too much.
And the funny thing about it, the irony of it all, is that as the sick person you actually feel worse about what you’re doing to your spouse than you do about how sick you are. It really messes with your self esteem. Forcing your spouse into something so challenging difficult and heartbreaking. For me it’s just been very humbling anger-inducing and embarrassing and yes I often feel shame for being like this.
So if you know her, send some positive energy her way. Or a message or a text or a call or a prayer. Anything you can think of to help lift her spirits or support her. She’s taking the big hit and the heavy load with this. Not me. I promise as strange as that sounds, I believe it is true.
Speaking of that, for those of you who have already known about this and have been helping along the way, THANK YOU! We don’t have words to express how grateful we’ve felt over this past year for you and everything you’ve done. You’ve taught us a LOT about the power of helping others and how it really is the most important thing we can do in life. We are very humbled grateful and appreciative for all of you and we love you all very much.
You guys know me. It doesn’t get more positive. One of the reasons why I kept this quiet for so long. I was certain I was going to power my way through it in no time at all and it would be over. No need to share it. So didn’t feel like it was a big deal. But yeah so it’s a big deal now. BUT I remain super positive about it. And super hopeful. I KNOW we will get through this. We’re getting close now. Just keep thinking and seeing the same thing with us please.
That’s it for now.