I'm just too sweet...

Got my diabetic labwork done again this week. The good news is that my numbers haven't gotten worse; the bad news is they haven't gotten better, either. Given my mother's raging diabetes (she takes 300+ units of insulin a day), I consider myself lucky to just be on medication for now, but I'd like to get better.

Dr. G has left me on the existing meds but may add another if I'm not improving by December. This is such a delicate balancing act. It's more than just a numbers game; it's about changing lifestyle. I'm a food addict, and, as I've said here before, the world's worst diabetic. But I'm also the only one who can change things, and long overdue to start.

The new medication's working...I can feel it here.

It took a while, but I finally got the right routine down with the Fentanyl patch, and it's my new wonder drug. It's handling the pain better and without the fogginess, fatigue or GI issues of the morphine or oxycontin. And I'm taking fewer Norco, which is my current breakthrough medication. The only trouble is getting the damn things to stick to my skin for three days. For now I'm covering them with heavy-duty gauze dressing tape, but it's not perfect. But it's worth the hassle to finally -- after nearly five years -- find a long-acting pain medication that WORKS!

Thanks for the change

Through workshops, online discussions and other interactions, I've met plenty of folks saddled with chronic pain who have little to no support from family or friends. There was the lady who slept on the couch because it hurt to sleep in her bed, whose mother blithely asked her to run errands. There was the man stooped and bent by pain whose wife saw his condition as an inconvenience that she could somehow nag away. There was the woman whose relatives suspected -- despite x-rays and other physical evidence of her conditions -- that she was lazy and probably seeking drugs.

It didn't take many stories like this to make me realize how lucky I am to actually have someone on my side. People who live with us chronic pain sufferers deal with a lot. We're not the people we used to be, and that's tough, both for spouses who didn't expect the whole "in sickness and in health" thing to be the biggest part of their vows, and for family members who've seen a loved one change. These people have to pick up the slack when it comes to housework, driving and other tasks. From the pain itself, drugs and side effects, we're often moody or irritable. And unless they're like the jerks I mentioned above, they must cope with all these life changes without blaming us.

And these things aren't your fault. Unless you went out and did a few lines of coke and then jumped off a building, your situation isn't likely something that you could have prevented. But just as it's important to accept the changes in yourself and not blame yourself for your conditions, it's also crucial to understand how your loved ones have had to adjust.

It's been a long road with Mrs. Lucky, and I am thankful for her support and understanding every single day. She's a tough cookie, and she's coped with my conditions -- not just the chronic pain -- like a trouper over the years. But it's been a learning process for her, and we've had to work together to make things easier for both of us.

So unless you're in a situation like those examples above, take a moment to thank your partner and other loved ones for their help, patience and understanding. You've got an incredible challenge, but it's affected them, too. Make them feel appreciated for handling the change as best they can, and maybe ask what you can do to help them cope (remembering not to apologize for your conditions). Often, just acknowledging their role in your care can make someone's day.

Goodbye, nice lady...please stay.

Started with a new therapist today, and part of the preliminaries included getting her caught up on everything I've had to tell to several people before. You see, I have this magic touch: I see a therapist once, and they a) leave town, b) leave the practice, c) start taking on more group sessions, d) vanish for some other reason. If I wasn't better adjusted, I'd wonder if it was something to do with me.

This is my sixth therapist, and I like her a lot. She's already got me scheduled for two more follow-ups, which is two more than I ever got with anyone else. Now, if she just doesn't get a better offer from Denver or someplace, I'll be making real progress.

Be careful what you wish for...

I've had some pretty noticeable tinnitus in my right ear lately, and was referred to an audiologist for a hearing test as the first step in rooting out the cause. Apparently, all cases of tinnitus are referred for hearing tests first, because, as the doctor doing the exam told me, "[general practitioners] don't know what else to do." It's frustrating, but at least the test was free, and I learned a couple of things, among them that I have a little hearing loss in the ear without the tinnitus. Go figure.

The doctor shared an interesting story. Several years ago, it seems, this particular clinic hosted weekly tinnitus checkups. On Saturday mornings, patients could see a maxillofacial specialist, a neurologist, a dentist and a host of other specialists in one place, all in hopes of finding the cause of their particular stripe of tinnitus. One such patient was a woman who was so sick of suffering from tinnitus that she opted to have her auditory nerve severed to rid herself of the affliction. She knew going in that she would be deaf in the affected ear, but it was worth it to her to have relief. After the surgery, she awakens to find that, yes, she's deaf in the affected ear...but the tinnitus is still there. It was then, the doctor told me, that he stopped participating in the weekly clinics.

Now it's up to my GP to take the next step in diagnosing the cause of my tinnitus. Until my next appointment, I'll be happy to pace myself. The audiologist's little cautionary tale was a reminder that my own second opinion can be the most important.

Traveling Without a Net

It's been a long time since I've taken a trip of any real length, and the one I'm planning for late next month is a doozy. With the freedom of a retiree, I'm spending a week at my mother's in Arkansas (haven't seen her in ten years), followed by another week visiting friends in St. Louis (where I lived for much of my childhood and young adulthood) and Kansas City.

Needless to say, the trip's going to bring some challenges. I'll be flying from San Diego to Arkansas, then to St. Louis, and from Kansas City back home to California. That's a lot of sitting. While there's not a lot of activity planned at Mom's (she lives in a small town and I'm there pretty much to catch up), the St. Louis leg of the trip involves socializing almost daily and a bunch of family tree research. This means a lot of driving, as does the journey up to KC.

And did I mention I'm making the trip alone?

This is all a little intimidating. The advantages of being close to home, having Mrs. Lucky nearby in case of emergency (or even angst), the comfort of a familiar bed to turn to when it gets to be too much physically or mentally, I'll be without all of these and more for two weeks. I only leave our apartment a few times a month these days.

But I'm already starting to reap some of the trip's benefits more than a month before I leave. For instance, I've written frequently in this blog about my non-existent social life. Well, one of the people I'm visiting in St. Louis is my childhood best friend, whom I haven't seen in more than 20 years. My Kansas City buddy (whom I've known since high school) just got over a nasty divorce and I get the feeling from our email correspondence that my visit might do him as much good as it will me. One highlight of St. Louis will be dinner with a group of co-workers from a job I left nearly 16 years ago. It's the world's biggest cliche, but our crew was like family, and seeing them RSVP one by one on Facebook has been as good as any therapy.

The journey will also force me to plan wisely and act on those plans. I'm only in town a week, so there's no putting off seeing anyone on my list. Rescheduling with anyone isn't an option. I'll also get a much-needed boost of self-confidence. Many of my nagging fears about the trip are unfounded, and just watching the journey unfold will prove to myself that I'm capable.

There'll be plenty of updates before and during the trip. In the meantime, I'm quietly reminding myself just how important this trip will be to my ongoing journey through the healing process.

A long walk that didn't kill me

Just spent two glorious days in Catalina, paradise within the paradise that SoCal already is. The island is, with few exceptions, pedestrians only, and aside from a trip via golf cart from the pier to our B&B, we walked everywhere. Fortunately, everything's pretty concentrated in Catalina's primary city of Avalon. But day two was filled with a lot of shopping and sightseeing that meant a lot more walking than I'm used to lately.

And guess what? I didn't die! I'm achy, to be sure, even a couple of days later. But I'm happy to say that the added pain isn't from the strain on my back so much as a kind of post-workout soreness. I didn't set out to break any personal records, but this is probably the longest sustained walk I've undertaken since the seizure, and it gives me the kick in the pants I need to do it more often. Which I definitely need...

New friend

The other night I made the rare trip out. Mrs. Lucky's co-worker (I'll call her Jeanette) was exhibiting some artwork at a nearby club and there was a kickoff party for the show. I'd met Jeanette at Mrs. Lucky's office Christmas party, and she's a lot of fun. She doesn't treat me like the husband of a co-worker; she interacts with me and laughs at my jokes. She gives me a big bear hug at the top of the evening and makes little Mrs. Lucky-approved innuendo that stokes my ego. Jeanette's husband was also there. I'll call him Larry. He's almost Jeanette's polar opposite: a little on the shy side, like me, but he feels compelled to start conversations. Because of my own social anxiety, small talk like this makes me uncomfortable, and I struggle to keep going so I don't insult the guy.

At one point in the evening, I was seated next to Larry at the bar and we were making our usual awkward small talk. He ordered whatever he was ordering, and I got my usual ginger ale, at which he raised an eyebrow. I explained that alcohol's a no-no with all the pain meds I'm on. Suddenly, Larry and I were best friends. He, too, has had spinal problems, surgeries and pain issues. He's not on the magnitude of medication I am (otherwise he'd be teetotalling as well), but we had enough shared experiences to keep our conversation going for several minutes.

I've had this experience with other people, and also at parties. But Larry's roughly my age and Mrs. Lucky really likes Jeanette. I think this could be the beginning of the first new friendship for me in a decade.

What's my pain worth, exactly?

During a discussion of household jobs at one of my chronic pain management workshops, someone mentioned groceries, which is a hot-button issue with me. I used to do 90% of the shopping because I loved it and also because I cooked a lot, so it was easier if I picked everything out.

Then came the seizure. The pain limits standing, walking and lifting, of course, but as I've mentioned before, the hardware in my shoulders prevents raising my outstretched arms above chin level. So except for a brief stop to pick up one or two things, grocery shopping became one less (kind-of) fun thing I could do, and one more chore to add to Mrs. Lucky's side of the scorecard.

Then I remembered that our favorite chain delivered. Perfect! Now I shop in front of the computer, even getting Mrs. Lucky's input, which she didn't always get when I shopped in person. It's almost as much fun, but there are some downsides. First, the company (which I should allow to remain nameless, but is Von's) doesn't offer everything online. Love that specific soup flavor or variety of pretzels? You may have to settle. They're also frequently out of items. You have the option when ordering to substitute either a different brand or size, but we've had problems with that, so I just check "no substitutions." Finally, there's a delivery charge catch-22: It ranges from $3.95 to $9.95 depending on a bunch of factors, but you can eliminate it if you spend $150 and buy five items from a certain list. When it's all said and done, however, it's been a good solution for us.

When I explained all this to my group, they saw nothing but downside. I understand that limited incomes make delivery charges and minimum orders sound unappealing. I also know that if you're not able to drive yourself to the store, you're paying cabs, public transportation or friends or family for transportation. I understand that not getting everything you want can be disappointing. I also know that eating a different brand of corn flakes is fine with me if it means I didn't have to ask for help to get it down from the shelf.

Like other chronic health conditions, chronic pain means making adjustments. Will every adjustment be perfect? Of course not. But that comes with the territory. How much is my comfort worth? At the very least, it's worth putting up with a different brand of corn flakes and a couple of bucks for delivery to get food in the house.

The king is dead...long live the broccoli

(Okay, disclaimer: I love broccoli and all vegetables.)

Now that that's out of the way, my reign as the World's Worst Diabetic is at an end. My numbers are off the charts, and the good doctor has said my diabetes has "slipped out of control." He's doubled my metformin (ugh), but fortunately said nothing about my weight or diet. That, it's understood, is for me to tackle on my own.

I admit that I've sought out food for comfort at every turn in my adult life. There are plenty of psychological reasons for it (believe me, I'm the first to defend the overweight or obese - there's more to it than just "eat less."), but now it's all over. I can no longer ignore the sick feeling after eating the wrong stuff, or the fatigue after virtually every meal. The good news is that I'm down four pounds since January.

Sigh. Anyway, watch this space for further updates.

Taking Stock

A few professions, writers among them, use something called a curriculum vitae, or CV. It begins as a simple resume, but goes on to provide an in-depth survey of your entire career, including professional memberships, works in progress, selected publications, speaking engagements, etc. Mine runs to the low side of the recommended four to six pages.

For the first time in more than a year, I had occasion to update my CV, which I include on my web site. And I was surprised at the little lift it gave me. The new info was important, of course, but reviewing my past successes turned my day around.

It's easy to lump your life, your work, into a blur of the past, especially if pain or disability has changed what you do or how you do it. But life and career are made of little moments, with plenty of successes among them. While updating my CV, I had reason to review my triumphs once again. And it changed how I saw myself today. Hell, it actually made me see myself today.

Even if you don't have need for a resume or CV anymore, try creating a "life resume." Don't just think about your successes and abilities; write it all down. Organize it however you wish. Since you're not using it to get a job, add categories like "Close Friends," "Family Relationships," and such, and list successes: the kids you've raised or are raising, the last time you painted the house, or your 10-year marriage. Take stock of accomplishments that you've never seen as accomplishments.

If you like what you see, revisit your personal CV once in a while, to update it if necessary, but also to get a sense of the total human being you still are.

Crisis during mid-life or mid-life crisis?

I've been wrestling with my back issues since my late teens, and a big factor in dealing with them has always been my age. It's one thing for an older person to have aches, pains and difficulties, but quite another for an adolescent. There's a greater urgency to try different ideas, both on the part of the patient and the medical community.

But nearly 25 years have passed since the first time my back went out, and it's getting harder to differentiate between ongoing conditions and the afflictions that spring up naturally (for lack of a better term) in middle age.

I feel like I'm starting to blend in to the great mass of middle-aged and post-middle-aged, where my issues aren't that much different from those of the guy next to me. It's not as if I felt somehow special when I was younger, but I got this sense that because I had more life left, there was more to be done. More avenues to explore when it came to managing the pain and the problems. More, as I said, urgency.

When I step back from this issue and look at it without the inherent self-pity, it occurs to me that the way I'm feeling about my health problems going into this stage of my life is a microcosm for my feelings about midlife in general: inevitable, with new pains and new promise, and probably the biggest pain in the ass since puberty.

Eek

Until a few years ago, I was pretty squeamish about a lot of injuries. But having all the breaks and surgery I've had eliminated most of that. There's one thing, however, that still has the ability to make me stick my fingers in my ears and go "lalalalalala I'm not listening!" when it's discussed: compound fractures. The very idea makes me cringe. I've considered having a medical alert bracelet made that states that I should be shot if I ever see one of my bones sticking through my skin. It's just not a memory I want to live with. I have trouble looking at my gums.

I bring this up because of NCAA basketballer Kevin Ware's injury this weekend, which I didn't see -- I don't watch sports -- but was unfortunate enough to see covered in gory detail (no pun intended) on the web. Luckily I have yet to see pictures. And from complete stranger me to Mr. Ware, you have my unending sympathy.

Blech...

Why is it that I can have all the conditions I do, and yet nothing lays me out like a simple sinus infection? Granted, there's a deviated septum and chronic rhinitis (nice name) on my chart, but it's always been this way. When Mrs. Lucky gets a cold, I always end up getting a week's worth of congestion, and all I want to do is get under the covers and speed up time.

When I was working in Cubeville, I used to be one of those people who dreaded calling in sick. I'd read all kinds of judgment into the boss's "Okay, get some rest. We'll see you when you get well." "We'll see you when you get well...at which time we'll introduce you to your replacement," I'd hear, or "Uh...huh. Oh-kay. Have fun being sick, then."

All throughout my self-employed, and now disabled, lives, I've had a sort of creeping paranoia left over from those days. Some lingering fear that by taking care of myself for a few days until I get better, I'm ignoring some major responsibility that I just don't remember.

I guess some things never leave your psyche.

Now if you'll excuse me, I'm going back to bed.

Never stop fighting

I get pretty exhausted dealing with chronic pain and all the other stuff, but I never stop fighting. Part of what helps is the support group I have built around me: my wife, friends, an online social network and plenty of doctors and therapists. I heard a great quote today, a line from a poem by Adrienne Rich, that I found worth sharing:

           "There must be those among whom we can sit and weep and still be counted as warriors."

What keeps you fighting the good fight? Consider those around you: do they allow you to vent and rail and scream and weep and then help push you back into battle? When was the last time you thanked them just for that?

Taking Control

When the "perfect storm" of health problems first struck, I understandably had a lot of questions. More than my doctor could answer in one visit, in any case. So I turned to the internet and began to educate myself on my conditions. I was responsible in my research, collecting facts and opinions from a variety of sources. I didn't trust everything I read. I spent a lot of time on message boards and forums, reading what others with the same afflictions were talking about.

I did all this because I realized that I had, to that point, very little idea of what was really going on in my body. The doctors could diagnose and give me the broad strokes, but I needed the facts that would calm my fears, guide my self-care and enable me to ask good questions and understand the answers.

Along the way, something remarkable happened: all this information was putting me in charge of my health care. I had become my own advocate. The questions I asked my doctor indicated that I'd done my homework, and he respected that. I was now his full partner in managing my health issues.

A decade or so later, I feel that I'm better for having been proactive in understanding my conditions and actively discussing issues with my doctors. After all, this is my only body. If I don't speak up for it, who will?

NERVES!!!

Seeing the doctor Thursday, to finally get some help for the nerve pain. Though mine isn't caused by my diabetes (see my last post), I've just seen a commercial for Lyrica, a diabetic medication, that sums it up. The "real guy" in the ad says that he has trouble explaining his nerve pain, because it's numb, but also feels like a million needles at once. I'm thinking, "Exactly!" Fortunately, as tough as that is to understand, the medical people I've talked to seem to get it. Mine's a combination of those two things, plus the shooting random jolts I described last time. I'm very hopeful there's something out there that will help.

Getting an Education

On my last visit, I told my doctor that I was experiencing numbness, cold and shooting pains in my feet. I'm the world's worst diabetic, so I thought I was looking at the onset of diabetic neuropathy. Not so, says Dr. G; my diabetes isn't bad enough and hasn't been around long enough for that to be the case. Instead, he says that this lovely new symptom is caused by scar tissue that continues to develop and cause all kinds of hell some four years after the trauma. Nerve damage is also responsible for the persistent burning sensation in my shins that's been around since I was in the hospital.

And here I thought that scar tissue stopped a few months after I got out of the hospital.

I can't stress the importance of knowing the full story of your condition(s). What your doctor tells you is only the beginning. Start by asking him or her questions, then take to the web or even the library to seek out the details. Search online forums and other resources for fellow sufferers. Ask every question you can think of and keep asking until you get the answers that satisfy you.

It's easy to take our health issues for granted, even when the news isn't good. But understanding what's going on in our bodies can be half the battle when it comes to getting well...or at least coping with what can't be fixed.

So I don't believe in resolutions, but...

On the whole, I don't believe in waiting for the new year to start fixing things. But since everyone's doing it anyway, why not? This year, I've simply vowed to take better care of myself. Not just more exercise (what I can do) and vegetables, but other things, too. I've got no shortage of things to work on.

Scar tissue has created some new nerve pain issues that have pushed me to find new alternatives to manage my chronic pain. The first step is the Physical Medicine department at Kaiser, which might hold an answer. But I have a terrible track record with keeping appointments, so that in itself is a challenge. Next up is aqua therapy, which was recommended more than a year ago in my comprehensive pain management workshops. I've also decided that this is the year I bite the bullet and try acupuncture. I've never believed in the "aligning the chi" part of it, but I've heard enough testimonials from people who've gotten real help from it that it's time for me to jump in. Besides, it's one of the last avenues left for me to try.

I've written before about the importance of socializing, which is also on my list. Since I believe that it's the doing of something itself that makes things better, it's time to practice what I preach.

Finally, I plan to do something about these glasses. I doubted these frames when I bought them two years ago, and still can't stand them. My appointment is this Saturday. Now if I can just keep it...