Tuesday, June 21, 2011

Doom, gloom, and other bits of joy

So, tomorrow is what I've come to believe is my own, personal Judgment Day. I'll be visiting the special specialist, and we'll all find out what's to be done about Destructo-Foot.

Leading up to this pending visit has been a lot of stuff. Physical and emotional stuff that's getting harder and harder to cope with. And last night, the tension within finally burst, bring me and my beloved to tears.

But let's review, just in case you've been missing a few posts, shall we? Here's what you do: look at the number next to the review for the physical, then match it with the number that follows on the emotional. So...

The Physical

1: Almost two months ago, I paid my first visit to my new podiatrist. We didn't know a whole lot, other than that I was demonstrating some of the classic symptoms of a flareup of Charcot-Marie-Tooth's disease. Plenty of scary-looking swelling, redness, and a significant temperature difference between my two feet. An appointment was made to see the special specialist and x-rays were ordered...

2: ...and they didn't tell us much. I might have this problem growing in my foot, or I might have that problem with my foot. The damage occurring to the bones made it difficult to tell what was what. So I'd simply continue my bed rest and wait, with a followup to the podiatrist scheduled.

3: On April 29th, I posted some pictures to my blog to show exactly how swollen my foot is.

4: The next visit to the podiatrist had us wondering what was going on with the second toe of my left foot. I have an ulcer there that's completely covered in a callus. This was a considerably minor issue as compared to the right foot, but the doc suggested we get x-rays of the toe, just in case. And, hey! While we're at it, let's get fresh pictures of the right, just to see if there have been any changes.

5: There was. They were now considering the possibility of there being a genuine case of osteomyelitis. But they couldn't be sure, because an x-ray of someone with Charcot's foot simply shows the bones making a mess of everything. And there still seemed to be so much time left between that moment and when I'd see the special specialist, so the podiatrist now ordered an MRI.

6: The MRI, while fascinating to look at, was also disturbing. The contrast they injected was designed to light up anything worrisome. If that's the case, then there were a lot of little worrisome spots to look at. The report made looking at the MRI even better, with the phrase "grossly abnormal appearance" preceding a list of bones that are in bad shape. The worst seems to be a bone called the talus, which connects the foot to the leg directly. As an added bonus, the MRI picked up a fracture in that very bone. (Yay?) All we could do was wait for my appointment tomorrow.

The Emotional

1: The whole Charcot's foot thing was quite a scare. This is one of those things that brings about the amputation of a foot on a diabetic. When the foot collapses completely, there's really nothing left to walk on. It's too painful to bear weight, and it becomes a wiser choice to remove it. I was prescribed bed rest, which didn't go over very well with me. I'd tried to continue doing what I could in life, despite being judged disabled. Now I was being told to do nothing that involved being on my feet, and being in bed was an even better choice.

This left everything in Becky's hands, and...Well, Becky isn't exactly lazy, so much as she'd rather not have to be a grownup if at all possible. It has to do with her psychological makeup, which I understand in far greater detail that you...and I ain't revealing that which a future husband ad wife have discussed. Still, she was left with work, school, and now taking care of the household, with me a spectator at best. It was frustrating.

All of this was made much worse by the pain I was experiencing in my foot. My toes felt like they were on fire. Sharp pains were shooting through my foot, and these pains were unlike the shooting sort brought on by neuropathy. Perpetual pain that's increased from my "normal" perpetual pain was just making me miserable.

2: Not knowing is somewhat worse than knowing, because there's an inability to take any kind of action. A psychological pressure starts to build when you know there's a problem, but there's nothing you can do about it. I was stuck in bed, watching movies and praying the special specialist's office would call with a cancellation. There was no such luck to be had.

It didn't help that a visit to my PCP revealed that I was slowly making my way from 180 lbs. to 190 lbs, and climbing. Weight issues kind of run in the family, and my inability to so much as walk across the street to the market for some light food shopping was starting to reflect on the shape of my body.

3: Being in communication with people over the internet means that there's always the chance I could just be telling tales. "Pity me, for I have this disease you've never heard of!" I felt I had to prove it, so I posted those pictures. If anyone saw them and felt a kind of fear, try to imagine looking at the end of your leg to see such a foot attached to you.

4: I was so frustrated by being stuck with a virtual inability to do much of anything that I was ready to say, "Just take off the damn toe so I have one less thing to worry about." Not a good thought, but at least I knew something would be happening, instead of just lying about all the time.

5: Osteomyelitis has become a kind of foul word to me. Having had it once, and only once, I've come to fear its existence. A bone infection would mean hospitalization, and a couple of months on IV antibiotics. It would mean another chest catheter, which would mean special maneuvers in the shower to keep it dry. It would also mean more pain, bone disintegration, and a greater possibility of amputation should I be unable to shake it.

I had to collect a copy of the MRI for the special specialist, as he'd be unable to pull it up on his computer. Well, since I had it, I might as well look at it, right? I understood absolutely none of what I was looking at, cool as it was to watch the pictures "generate the insides of a foot" as I scrolled through them rapidly. Those parts that I saw "light up" may be absolutely nothing, but they gave me more things to worry about.

As though I didn't have enough to worry about. Here I am, sitting on my butt all day, unable to do much of anything at all, and fretting the future. Becky and I are constantly talking about the bright, beautiful future ahead of us, and it looks bleaker with each passing day. I'm so frustrated by this malformed foot that I'm starting to think removing it would just cut to the chase, so to speak. "Take it and let me get on with my life."

And then came father's day. As a good, dutiful son, I called my father. He asked the dreaded question, "How are you?" and I answered. As I vented my frustrations as to being unsure what to do with this foot, and how I was ultimately displeased by things like weight gain and my inability to do the dishes, he decided to weigh in on my life. "You have to do something. You're planning on being a husband."

Thanks, Dad. I wasn't feeling bad enough just yet. I needed a good shove over the edge of depression to make me contemplate the worst. Should I cut the foot off here at home, or wait for the doctor to do it? Maybe then my self-worth will climb one miserable notch so that I'd feel like I was worth ALMOST nothing.

It all came crashing in on me last night. Becky and I end each night with a kiss and an "I love you" from each of us. If these things don't happen, come away with a sense that something's wrong. So when she said "I love you" first, my response was, "Why?"

And the question was choked by tears, anger, frustration, and no view of the future. Over the last few weeks, I keep thinking that Becky is wasting her life with me. I'm too broken to be a husband or father. And so the contradictory thought keeps coming into my head, I love her and need to save her future, so I should break up with her and be the lonely, miserable wretch that I am. This is immediately countered by, Oh...So you should shatter her heart because you love her? Brilliant.

Well, we talked for a bit, lying in the dark, with her holding me and doing quite a bit of crying herself. Becky hates seeing me in any kind of pain. And at the end of the conversation, we had a movie moment. It's as though someone scripted the lines, which were perfect.

Me: I'd be lost without you.
Becky: I'm not going anywhere, so you'll always be able to find your way.

G-d, I love this woman!

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