We’re hanging on by our fingernails. Tomorrow we will let go.
October 23, 2016
This is a long journal entry. I would apologize but I really can’t. I needed to get this all out for my own sanity. There’s a lot here. We get asked every day about his injury and disability, so I thought it was important to explain it here. And then there’s so much unknown in the next week or so, I just had to do this to sort out my feelings on it all. Be gentle with me on editing and rambling. I haven’t had a chance to read it over, edit, etc. I just wanted to get it out there before going to church. So you get the raw, messed up version too! Kudos to any of you who read the whole thing and actually make it to the end!
Many of you know that my husband and I have been through our fair share of health struggles. (A lot of people actually tell us it’s more than our fair share. We can’t really judge that though. It’s our journey so it is what it is. Right? You do what you have to do. ) My cancer was our most recent adventure down that path, but really, our big overarching medical journey started in 2009 when my husband was injured during Air Force PT. Even though it was a life changing moment, we had no idea at the time. He simply came home from work (at the end of the day – not even early) limping and grimacing with what he deemed a strained muscle. The next morning, he even got up and mowed the lawn. Did the trimming too. No biggie. We did what we always do – we pressed on.
But a few days later, he couldn’t get out of bed and (note: we’ve passed the point of embarrassment or delicacy here – his injury is in his groin so if you’re offended by that whole region, read on cautiously!) his entire pelvic area – including all his manly parts – was swollen and absolutely agonizing. This was the first hint of something bigger. Now I should state that my husband’s pain tolerance is off the charts. He’s always been the manliest of men. You could even say he would probably graduate with honors from Chuck Norris Man School. One time when we were first married, he came home with this bloody and greasy little bandaid taped onto his thumb and I asked what happened. Oh, well, while he was cleaning a gun at work (Air Force combat arms instructor) a cleaning rod had slipped and gone THROUGH his thumb. Actually went in one side and came out the other. In all honesty it’s pretty likely he coined the phrase to slap some dirt on it. I’ve seen him do that. So when he says we need to go to the doctor? Everyone on the planet can feel the ripples in the force. Seriously.
That day we went in for a simple routine walk in appointment and ended up going to 5 military clinics before the day was done. The doctors had found a hernia and surgery was necessary. Everyone kept blowing off the fact that he was in complete agony and that as a young, healthy guy in his 30’s he was needing to use a wheelchair. Everyone was positive the hernia was the issue.
We had so many problems with this hernia surgery. At one point, we had a young medical student who called himself a doctor and wanted to try something he’d only read in textbooks. He attempted to ‘fix’ hubby’s hernia manually – from the outside – without surgeon’s approval. It was not good. In any way. That was one of the worst things we have ever experienced in our lives. I don’t say that lightly. I’ve been through cancer and having parts of my tongue cut out. This thing that the med student did? It was reallybad. And the way it turned out? It didn’t fix anything. It actually destroyed hubby’s pelvic floor. In fact when they finally got to the surgery the doctor came out of the OR all white faced and said she had no idea how his internal organs had been kept inside his body. Note: it wasn’t like this when we went into that first appointment. That happened during the 98 required examinations and visits to every clinic imaginable before he could be approved for surgery.
Everyone assured us that post surgery it would get better. But it didn’t. A friend of ours had a DOUBLE hernia surgery at the same time and was out playing basketball a couple of days later. Jon still needed a wheelchair to do long distances. But the doctors kept calling it post op pain. His superiors were not inclined to be so gracious. The doctors said he should be back around in 6 weeks. So at the end of six weeks, he was thrown immediately back into full on Air Force life. In fact, first day back, he was required to stand at attention for about 20 minutes followed with mandatory PT. That included running (timed running), push ups and sit ups. And it very nearly killed him.
To be fair, the doctors couldn’t figure out what the issue was and because of that, there were no excuses with his commanding officers. Hubby’s immediate superior at the time believed he was faking it to try and scam the military into disability pay. He honestly believed my hubby wasn’t injured and was faking it. So he would force hubby to do things in order to try and ‘catch him out’. Doctors were aware he was having issues. They just couldn’t explain it. So they gave him lighter duty. His superior pushed those boundaries to their absolute limit. Doctors write a note to say he can’t stand for longer than ten minutes? So make him stand for ten full minutes at attention. Then do it again in 30 minutes. Or an hour. Can’t lift more than 20 lbs? Okay. Carry that 20lb ammo can from one end of the hallway to the other and back again. Oh and seriously – I never knew someone could be so spiteful, but hubby worked on an upper floor and was ordered to NOT USE THE ELEVATOR. It was awful. Horrendous. During the entire 12 months or so that this went on, he was in absolute agony and never said a single word in rebellion or anger. He had signed up for this. He was going to follow orders. His career was not going to be destroyed over this. Little did we know…. (At the end of it all, he ended up making MSgt and his commanders ended up taking that promotion away from him through a series of very messy political legal documents. Even the military legal teams felt it was unfair, but it still ended up happening. It was a really horrible messy situation, but as much as he pressed on with the hope he could move forward, this injury was the end of his career – in a really horrible way. It not only hurt him physically, but it crushed the love and regard he’d always had for the Air Force.) This part of our lives was so crazy that I drove him 45 minutes to work every day and we stayed on base. We would go do our homeschooling at Starbucks or in the food court. We even had to amend that later because his superior started ordering him to take paperwork from one building to another – requiring walks of a mile or so if we weren’t there to drive him. So for about 8 months, I homeschooled the kids in our van. He got into trouble for that too. His superior at the time called him in and made him stand at attention while he told hubby off for trying to play on his sympathies with our family sitting in the parking lot every day. It redoubled the man’s efforts to catch Jon out in his lie. (My hubby is not really gonna be a fan of me sharing this part. It makes the military look bad. But I think it’s important for people to see what he’s been through. What we’ve been through. And as ugly as it was, this was part of the journey.)
About 10 months after his initial injury, we ended up in the pain management clinic and I demanded to know WHY he was having such horrible pain. This whole “it’s just a part of surgery” didn’t add up since he’d had the pain before the surgery. So after much pushing, prodding, and being generally annoying, they agreed to a pelvic MRI. This was when the lightbulb clicked on. The results of that MRI showed that the original injury was that he had torn all the muscles inside the base of his pelvis. And with all the treatments, exams and even surgery done for the hernia, it was the exact opposite of what should have been done. His muscles ended up healing incorrectly (one doctor described it as a big softball sized mass) and all of his pelvic area was covered in scar tissue. He was told that it looked like his pelvis had been run through a cheese grater. In fact, ALL of the doctors we had seen (every clinic at Wilford Hall except pediatrics and OB – I’m serious) did an immediate 180. That MRI scan made seasoned surgeons and professionals in the medical field go pale. Everyone very quickly became accommodating and helpful. Whatever we needed. However they could help. Except there was no help to be had. The incorrect healing of the muscles had entrapped nerves. And the nerves controlled all sensation to my husband’s groin. No surgery. No fix (in fact a couple of the treatments we attempted made things worse!). There was not one single thing that could be done except for pain management. And the only thing that worked with that was drugs. We did try it all. Massage. Chiropractors. Steroids. Herbals. Accupuncture. Been there. Done that.
He has described his pain as equivalent to being kneed in the groin about every ten to fifteen minutes.
Let that sink in. Being kneed in the groin every ten to fifteen minutes for the PAST SEVEN YEARS. The doctor’s tests have verified this. When I say my hubby has a pain issue, he really, really does.
Now we did have this one thing that worked. It was a TENS unit. And it worked but only as long as the electric pads were in place and the machine was on. That makes life a little difficult when the pain is all over your groin area and private parts. He can’t go out or do anything.
About 18 months ago, we started doing something called Radio Frequency Ablation. It’s where they put probes into his spine and send electric shocks through them. The doctors explained to us that the nerves had learned to shoot pain signals constantly. That’s become the norm. Doing this RFA treatment was like shocking a heart that was beating out of rhythm. It wound the nerves all up, made the pain shoot agonizingly more for about a week or more and then it would settle down. He wouldn’t be pain free, but he could function.
Except doing that treatment every 3 months or so has created scar tissue. The probes aren’t going in as well and the shocks aren’t as effective.
So tomorrow we’re doing something really, really big. There’s a new pain management trial that is only happening with a small handful of doctors in the U.S. It’s absolutely new and so cutting edge that they really can’t tell us how or why it works. Only the US military is doing this. Only the pain clinic he’s being seen at. And his injury is a PERFECT TEXTBOOK fit for this procedure.
It’s scary. They’re actually going to go INSIDE HIS SPINE and insert wires and electrodes and such IN his spine directly to the main nerves that control all the sensation to the lower half of his body. And they’re going to set up something similar to that aforementioned TENS unit INSIDE his spine. The easiest way to describe it is an electronic epidural. If the trial goes well tomorrow, they want to implant the permanent device as quickly as possible. We are looking at the potential of two major spinal surgeries in just a couple of days this week.
They can’t give us averages for what to expect because they haven’t really done it enough to give us a good average. Some have gotten up pain free immediately. Some have been paralyzed for days until the swelling went down.
But across the board, at this point, it’s been a big success. Most of the people who have done this have been able to get off of pain meds completely and resume normal life. NORMAL LIFE. I don’t even know what that is anymore.
I have peace that this procedure is going to change my world. Unlike the injury that changed our lives earlier, we can feel the massive potential here. We can feel the importance. It’s looming over us HUGE. It’s scary as heck to even DREAM about how much different our lives would be.
I described this to a friend of mine who isn’t a believer. I told her it’s like the Emerald City is there and we’ve been given a pass. We’ve been told we’ll get there and we know that things are going to be so much better when we do arrive. We KNOW this. We have faith in that. But between us and the Emerald City there’s a massive, dark forest. We know we’ll get through it, but we don’t have a guide. We have no idea what we need. We don’t know how long we’ll be there. Or what we’ll experience while we are in there. Just because we know that we will come out on the other side, that doesn’t mean we’re not going to have to battle, struggle and fight on the way through. Or that the journey is going to be pleasant. But this is where faith kicks in. We’re going into that forest. And we are going to come out on the other side. One foot in front of the other. Every. Single Step.
Or to go back to the original thought – we’ve been hanging off of that cliff for the past seven years. Just barely holding on. It hurts. It’s scary. We’re exhausted. But tomorrow, we’re letting go. And there’s an exhilaration in that. It’s in God’s hands. WE are in God’s hands. We’re trusting in that.
This is where we are going to be. And this is where we’re going to live from here on out. We believe that. We just need to let go before we can get there.