Many stones

I've been hiding out for a little bit. I'm having trouble adjusting to the idea that I have neuropathy. It brings up all sorts of nasty feelings.

Did I do enough to control my diabetes the past eight years?

Did I do this to myself? Is all this pain my fault?

My HbA1cs have been fairly good, but I'm sure I have swings into highs that create the possibility of damage to my nerves and blood vessels, while the blood is overloaded with glucose.

Is this foot pain a physical manifestation of my thoughts? My negative emotions? Is it a punishment?

You know what I mean, I think. And yet these thoughts are lies. Because I haven't abused myself. I didn't wish this on myself. My faith is not weak. God's grace abounds, even to me.

I had my follow up visit with the NP at the Pain Clinic today. The MRI did not show any actionable flaws. It did show a little bit of degenerative joint disease in my great toe, but only on the left foot.

They recommended that I visit the psychologist for 8 sessions. He'll apparently teach me some coping techniques and tools that often prove helpful for folks with chronic pain. (And no, seeing the psychologist does not mean that they think the pain is all in my head. It means that I want to use my mind effectively in this battle.)

I haven't gotten past the (competent, highly effective, polite but immoveable) scheduler in the Neurology department, so I have to follow up with that. The NP assures me that the neurologist should be able to figure out whether the pain originates from a nerve injury (such as Joplin's neuroma) or from neuropathy. I'm hoping that the neurologist may have some sort of prediction of the course of the condition.

We tweaked the meds a little. I do feel like the pain is diminished, but I don't feel like it's conquered. I like the direction of the trend. I feel I can walk more. I don't feel like I have to ration my steps or my standing time. I'm still in my clunky unfashionable shoes.

Life is good. I think I can live with this pain. I think that it is not a punishment. And I don't think that it's OK for me to throw stones at myself, figuratively, thinking that I didn't do a good enough job at managing my diabetes.

Maybe I could have done better, eaten fewer bites of this, chosen that more often, but it's in the past. I have to deal with what is. No second-guessing, unless I can gain wisdom for the next set of choices.

Life is good.

Diabetic, Mental

Today I saw this phrase on an application for services. Under the question, "what is the disability or medical condition that causes you to need services?", lay these words:

"Diabetic, Mental."

I feel the need to add that we had carefully reviewed this particular form, the process lasting about 18 months, and added the words "please be specific" after the question.

The caregiver filled out the form. So I get to call up the caregiver and find out what is meant by the phrase "diabetic, mental" in this particular case.

And what, then, does it mean in my particular case?

And what does it mean in yours?

Thwarted

I went out to the one and only machine which sells my soft drink of choice, Pepsi One. I consume 2 to 4 of them per day at work, usually between 8 am and 2 pm. Steve, who owns and stocks the machines, says I keep him in business. (Couldn't I just hand him $20 every week, and ask him to walk one up to me when I'm out?) The machine's out in the shop. You're going to know that my foot pain's bad when I won't walk to get it. Really. I suppose I could roll the chair out, though...

Anyhow. Today, I found this:



















The had cordoned off my machine!!

Curses!!!



















Please pardon the second photograph, hard to judge the light from the reflective cones.

You don't want to get between me and my PepsiOne. And check out that first picture, again. See what they're advertising on the bus on the right side? Yes, that's right, Pepsi!

Grrr.

I've been more or less addicted to Pepsi products since I was about 12. Before diagnosis, it was regular pepsi. Since diagnosis, Diet Pepsi, although I signficantly prefer PepsiOne. It tastes much closer to the taste my system remembers from the High Fructose Corn Syrup sweetened stuff.

I leaned carefully over the protective tape and put my coins in the machine. I sweet talked one of the workers into handing the can to me. I smiled and walked away.

Tomorrow is another day. And it had better be better.

Here's Hoping for Amy

I mostly use the internet to shop. Really it's true. And I can admit it. Sometimes I just am window shopping and sometimes I'm really buying. Sometimes I look for new pets. Sometimes I look for new homes.

But these listings for kids needing adoption just about break my heart. Here's the local one for the Northwest Region. But enough about that.. it's this kid who's been on my mind for a while.

I bring you the lovely Miss Amy of Louisiana. (Click on the link, please.) She has diabetes (type 1). She needs a home. I'm sure the last several years have been tough for her. Many of you know what it was like to be a teenager with diabetes. Can you imagine being a foster kid with diabetes in your teenage years?

There are websites for all sorts of special needs adoption kids-for ones with cleft palates, for ones with club feet, hepatitis, deafness, dwarfisms, etc. There are even a few websites that gather up the listings for available-for-adoption children with a specified diagnosis or disorder. But none (that I've seen so far) for kids with diabetes for adoption. Texas has this handy reference available, just in case you were considering a kid with Type 1 diabetes and had no idea what you might be getting yourself into.

Here's a link to the Louisiana Adoption Services page, if you need more information or wish to contact her worker. (I didn't ask anyone's permission before posting this, so I may get my hands slapped for it. It's a fine line to walk between seeking an appropriate adoptive family for a kid and advertising her like a laundry detergent. And the kids are deserving of respect and privacy. And here I am blogging about her. Talk about loss of dignity.)

If you're considering adoption, can you consider Amy? Or is there someone in your circle of friends who could be Amy's new family? I'm praying for her. Is there some way that the community of PWDs could support Amy? (Can we get her on dLife?) We'll have to think and consider this one.

Here's hoping for you, Amy! Hang in there, girlfriend. Keep on testing!

Things are cooking!

Dr. Parts and the boys from work are off for the weekend camping. Here he is pre-cooking various foods which I promised I would not disclose on the blog, because they are, in the wife's opinion, not terribly healthful for human consumption, diabetes or non-diabetes. (It's Uncle Dave's Famous Beans. If you write your address on a five-dollar bill and send it to him, he'll send you the recipe. It is wonderfully high in fiber.)

This photo is informative, because, believe it or not, even with Big Dave in the shot, you can see about half of the kitchen. Between the camera and him is the sink. At his left hip is the one and only functional drawer in the kitchen.

A ONE-drawer kitchen! If women ran the world, that would be illegal.

I had my psychological consult Wednesday morning. He talked about my pain a little and took a basic history, made sure I was safe, etc.

Besides my family history of diabetes, I also come from a family with a history of depression. So I don't know if it's in the genes or if it's in the behavior patterns that I've learned or what. I live with depression close at hand. The level of depression varies from day to day, season to season.

So when they ask me to fill out a depression inventory to hand to the psychologist when I see him, and I'm filling it out, trying to be honest but not skewed, either way, and I'm close to crying, just from the inventory, I know that's a bad sign.

I hate going to therapy. It is exhausting. And I hate feeling this depressed when I'm on two antidepressant medications. I hate crying through the hour-long session about things that I don't usually think about at all. It's all background. It's part of the landscape of my life. It is baggage. Old baggage, that I thought I had gone through, sorted out and repacked neatly. It's not supposed to make me cry again now.

So, because I was weepy, he's probably going to recommend more counseling. And he's probably right. I just don't want to say so out loud.

I had taken the whole day off, personal time. I was glad I had, since I was still weepy for a while. I took a little shopping therapy mid-day.

Then in the afternoon, they did an MRI of my feet. That was fine. It was noisy, but the tech was kind, and since only my lower limbs had to go inside the machine, I did not feel claustrophobic. I'm not optimistic that it will show anything. I'm hopeful, but not optimistic. I still haven't gotten the appointment with the neurologist. Becca, the helpful scheduler, is still working on it. She has been helpful and told me where I was in the process. I'm sure she's a joy to her department. Maybe I'll nominate her for an employee recognition award....hmmm.

I have been testing regularly, at least my AM readings. They've been high this week. This morning? 207. The culprit was late night chocolate cake. And I probably should have stopped at a half of the store's portion size.

I've also started taking alpha lipoic acid as part of my supplement regimin. My feet do feel better. I forgot about an acupuncture appointment this evening. Uh-oh. I'll have to make up with my Ac, somehow.

And I also feel silly for complaining about my life and my circumstances, when I frequently hear stories about other people's lives, lives into which I would not willingly step. A twelve-year old, diagnosed with a fast-acting cancer, probably only weeks from diagnosis to release. A 31-year-old diabetic man with vision loss and on kidney dialysis. A woman newly diagnosed with ALS. I go through these papers on my desk, knowing that they represent people, lives, struggles and losses. I pray for them.

And I pray that the tide of my depression will recede soon. It will be nice to have the house to myself for the weekend. Dr. Parts took the dog out into the woods for the camping trip. They'll be back Sunday night. I'm missing them both already.

Learning from history

Since diabetes is an ancient illness, it occurs to me that perhaps, it would be wise for the modern PWD to learn from the good practices of the many diabetics who have gone before her.

Thusly, I have prepared a small sample of what Scott optimistically calls my meal plan, or perhaps lack-of-planning would be more accurate in this particular illustration.

Sunday night dinner (Easter, as you recall, a traditional feast day):
French Toast, prepared a la waffler. Yum, yum. With peanut butter and margarine, and (real sugar) berry syrup and (non-sugared) maple-style syrup. Oh. And one fried egg. I ate five pieces.

Lunch, in case you were wondering, was with our friends over at Russell Street BBQ. God bless Sharon and Diane. And, let me state, that we do consider beef and pork barbeque to be an excellent celebratory meal. We did decline dessert. I must confess, though, to an intimate familiarity with the dessert menu offerings. My favorite? The fried pies, filled with chocolate ganache.

Monday morning reading: 192

Monday activity: Sincere repentence.

Monday night dinner: Homemade salsa & corn chips and minestrone soup. Corn chips, under most circumstances, send my readings sky high. I do my best to resist the evil ones (fried) and choose only the half-evil ones (baked). Couldn't find them on Monday.

Tuesday morning reading: 117

Perhaps I should visit Scott's nutritionist.

I'm back to OHSU tomorrow, for a visit to the pain psychologist and to the MRI lab. This should be interesting.

I'm not trying to fall off the wagon. I currently weigh 185 lbs, when I started the year at 170 or so. I'm very out-of-control with my eating, very worried and anxious. Time to reign in, reassess. Or, as Scarlett says, "Tomorra is another day."

Intake Visit

It is a joy to go to a brand new medical center. The OHSU Center for Health and Healing is a beautiful place. (BTW, I'm told that the Diabetes Center is still in the older buildings at the top of the hill.)

The support staff was wonderful, great receptionist, great nurse. Each of the rooms, while still quite small, was equipped with a tiny computer , with a keyboard and screen on an articulating support arm. The NP kept typing, preparing my file. She went out and consulted with the MD, and they both spoke with me briefly.

Bottom line: some adjustments to my meds (less tylenol, more nortriptylene), an MRI exam for each foot (check on nerves, muscles & fascia), a visit to the neurologist and some nerve conduction studies, and a meeting with the psychology pain specialist, and then back to NP to regroup, hopefully in about three weeks.

It sounds as if they think my foot pain is, plain and simple, diabetic peripheral neuropathy. And it's just bad luck, and it's just because of my diabetes. And I'll just have to find the best way to control/endure/live with the pain and find alternate ways of exercising.

Perhaps I'm reading into what little signals I got today.

I recognize that my pain seems 'nervy' in origin. I know that pain that's worse at night and pain that is bilateral are both associated with diabetic neuropathy. But I'm hopeful that there is some other explanation and some other solutions. I'm not sure I'm ready to begin to accept the diagnosis of diabetic neuropathy.

Wait and see, wait and see.

PS. I went to see my acupuncturist this evening. I didn't intend to tell him about my earlier post about last week's painful session, but I did. He was pretty nice about it, and I think he'll actually let me come back. This week's session was MUCH LESS PAINFUL! I actually did get to relax, rather than just lie there, tense. I owe him a big, big flattering and positive post. Overall my experience with him has been GREAT and I would recommend him to anyone who asked. Oh, and maybe next time, he'll get pictures of my feet with all their little needles and jumper cables. Something to look forward to!

The Soap Opera of Diabetes

I heard about this idea on NPR this morning. Here's a link to the article out of KUOW in Seattle.

Apparently, Group Health, the folks through whom my (paternal) grandparents got their healthcare for many years, has partnered with Seamar, a local community health service that serves the Latino community and produced a spanish-language soap opera, delivered over the radio. And the soap opera has diabetes woven into it. It's a health education message, delivered in a culturally relevant medium.

I applaud this effort. Since many Latinos will be affected by diabetes, any effort to give them tools to know about it, recognize the symptoms, and, after diagnosis, control the disease is a good one.

I wish the article said more about how they used the diabetes information in the plot and what results they're hoping for.

Let's hope they're working on the other part of the problem, providing the healthcare to folks who have their diagnosis. It all has to work together.

My Bruiser: An Update

My dear husband is doing much better. The stitches were removed this week. He hasn't seen the doctor yet to ask all his questions about the implications of the clot, diabetes, etc.

He seems to have an allergy to the bandages, or the adhesive used in them, because his skin did not react well to them. We did try to move the bandage to not hit the same area time after time. Alas, he still got broken skin. That created the horizontal sores you can see in the photo. He's been continuing to use a triple antibiotic ointment on them.

He's all better now. We ate lunch today at the Greek Cuisina, then went shopping for new sleeping bags at REI. We didn't buy any.

Just three more days until my intake appointment at the OHSU comprehensive pain center. Counting down the days..