Alzheimer's & Diabetes: Can't Forget

IMG_3162This morning, The Kid donned her furry Halloween costume and, with the promise of candy, traipsed behind a kind lady to a room filled with older ladies and gentlemen. We were part of a toddler parade at the local Memory Care & Alzheimer’s facility and I watched as the faces of these individuals lit up when small fairies, Spidermen, Supermen, ladybugs, Dorothy clutching a stuffed Toto, and my daughter, cavorted around.

They were all in varying stages of the disease that robs them of the thing I hold most dearly: their memories.

Some clapped and joyfully engaged with the children, asking them about their costumes. Others sat quietly, staring without emotion at the hullabaloo. One man didn’t speak at all, but when The Kid batted an orange balloon at him, he smiled and tossed it back to her. She fell down, giggling, in front of him and he reached down to grab her foot and shake it playfully. She grinned at him, he grinned back, and then she took off to look at the fish tank.

When I glanced back thirty seconds later, he was gone; physically still there, but lost in himself. I saw his spark ignite and extinguish in the space of a few minutes. My heart didn’t so much as break as melted.

One of my great uncles (my grandfather was one of thirteen, so there were a lot of great aunts and uncles growing up), Bill, drifted off into the horizon with Alzheimer’s when I was young, but I was shielded to the devastation that it wreaks on a family. It’s one of my greatest fears to be diagnosed with it (along with having a fatal myocardial infarction at a young age) and here I was, face-to-face with those who live with it – and in it.

Scientists are linking diabetes to Alzheimer’s disease these days. You can read about the link here , or here, or get your scholarly info here.

In a nutshell, the people who are a lot smarter than most of the world say that blood vessels in the brain are damaged by high blood sugars and that inflammation also plays a part in the aging of brain cells. The damage can be done years before the first signs of Alzheimer’s disease show up, so all anyone can say is the same as we always hear: keep your glucose levels within range, eat healthy, and get regular exercise.

I can’t forget the happy look on that man’s face – and then the absence of any emotion – and I sit here now, wondering if diabetes will take away yet something else from me in the years ahead.

If you wonder why I advocate and raise my voice for diabetes awareness and healthy living, this is one reason. One reason of many.

David Donald Doo Dreamed A Dozen Doughnuts And A Duck-Dog, Too.

Dr. Suess is big in our house right now. The tuck-in process includes “Brush Teeth!”, “Binkie!” (the same purple fleecy blanket every.night.since.November that I have to wash in between naptime and bedtime), and “Book!”. John reads a random selection chosen from our ever expanding library for the wee one, but I get a secret delight when a Dr. Suess book shows up in his hands, especially Dr. Seuss’s ABC’s.

The brilliant Ted Geisel says that D is:

David Donald Doo dreamed a dozen doughnuts and a duckdogtoo.

And it’s also that vitamin that is getting a lot of play with the research world and with a lot of us, too.

Up until last March, Vitamin D was just the “sunshine vitamin” and an additive to my milk. No idea what role it played in my body and I assumed that I was getting enough of it. Au contraire, mon frère.

Last January, in an off-hand remark to my endo, I said I was experiencing horrible pains in my joints. “My family’s arthritis gene is kicking in.” I also admitted that I was exhausted and wasn’t sleeping well, but simply assumed that it was just a consequence of having an infant in the house. He tapped his pen on my chart and asked: “Are you getting charlie horses?”

I gaped at him. “How did you know?”

He scribbled on a lab sheet. “You’re probably Vitamin D deficient. We’ll check your levels and get you back to normal.”

I didn’t go out in the sun very much, wasn’t eating a lot of fish and eggs or drinking fortified milk (I’ll admit, I was living on Diet Coke and whatever I could gobble during the day. Eating healthy was for the baby, not for me.) All of these things, plus the fact that I am diabetic, put me at risk for Vitamin D deficiency.

When the lab results came back, his nurse informed me that I was suffering from “severe Vitamin D deficiency” (like, almost into rickets territory) and that I needed to go pick up a prescription stat. 50,000 IU every day for two weeks, then every two week, then one a month. Mega dosing.

Sure enough, once I was back to normal levels, the joint pain went away, I began to sleep better, and no more charlie horses. Unbeknownst to me, another symptom of Vitamin D deficiency is poor concentration. It explained why I couldn’t keep a thought in my head, blaming it on “mommy brain”.

A Vitamin D level is now permanently added to my lab test list. I won’t let it get back into the danger zone. Why? This article: Low Vitamin D Levels May Raise Death Risk in Type 1 Diabetes.

Recently, low levels of vitamin D also have been linked to a higher risk for heart disease and death. Some studies are also looking at possible links between vitamin D and diabetes complications such as kidney and eye disease.

And the kicker:

Patients with type 1 diabetes and very low levels of vitamin D may be more likely to die than those who get enough vitamin D. However, the reasons for this are unclear.

What’s another pill? Nothing in the grand scheme of things…

But it’s not just taking Vitamin D after diagnosis that helps in the long run. According to this article (and a few others), taking Vitamin D can lower the risk of developing  Type 1 diabetes. 4000 IU each day for an adult and this study gives a recommendation of up to 1000 IU daily for infants and children. For anyone (diabetic or not) planning a pregnancy or currently pregnant, this very scholarly article plainly states:

Vitamin D deficiency in pregnancy probably increases the incidence of autoimmune diseases, such as Type 1 diabetes, in genetically predisposed individuals.

So, my question is this:

Why does this vitamin play a crucial role in the health maintenance of Type 1 diabetics and in the possible prevention of autoimmune disorders? What makes it so special? Anyone know? I dream about finding the answers…

And so does David Donald Doo.

 

 

Straight From The DUH Files…

My pump cartridge and my wedding ring.

Relationships are hard. 

Duh, says everyone. Millions Billions  A gazillion dollars have been spent by humankind over thousands of years to find out what makes us click – or not. Poems, books, movies, therapy sessions, divorce courts, and Facebook are mostly  about relationships. If someone actually figured out the magic formula, the world wouldn’t know what to do with it. We’ve been conditioned that conflict is good –  in moderation.

Diabetes is hard. 

Duh, says… most of us. Some medical professionals and people not familiar with the disease have this idea that managing diabetes is a couple of shots and watch what you eat and why aren’t your blood sugars perfect? You must be cheating. Managing diabetes is complex, convoluted, and confusing (Look! Alliteration!), even with better technology and better drugs and the ability to share and learn from each other. You know the old adage: “Insanity is doing the same thing over and over again, expecting different results.”? When it comes to diabetes, the adage becomes: “Insanity is doing the same thing over and over again, expecting the same results.”

Relationships and diabetes together are…say it with me…hard. 

I didn’t need a study to tell me that, but here it is, straight from the annals of Diabetes Care, published for their March edition: Personal and Relationship Challenges of Adults With Type 1 Diabetes . The researchers did a small study, using focus groups split into two categories: the Type 1s and their partners, asking pertinent questions about their relationships. Know what they’ve discovered?

Four main domains were identified: 1) impact of diabetes on the relationship, including level of partner involvement, emotional impact of diabetes on the relationship, and concerns about child-rearing; 2) understanding the impact of hypoglycemia; 3) stress of potential complications; and 4) benefits of technology. Themes suggest that, although partner involvement varies (very little to significant), there exists significant anxiety about hypoglycemia and future complications and sources of conflict that may increase relationship stress. Partner support is highly valued, and technology has a positive influence.

Again, I say: Duh.

I love the little quip about “…there exists significant anxiety about hypoglycemia and future complications and sources of conflict that may increase relationship stress.” I know this. I live this.

I see the worry lines in John’s forehead when he watches me struggle to come up from a low. Every day, we engage in some discussion about blood sugars or what I’ve eaten or some aspect of diabetes. He has been incredibly brave when I’ve been a coward, helping me choose the decisions that are best for our family. It is tiring to me, so I can only imagine how tiring it is to the people around me. Or if I didn’t have a supportive husband but a Diabetes Police new recruit. But you know what’s worse?

I once had a relationship with someone who just didn’t care at all. Despite being a medical professional, he chose to act as if it was just my disease alone to handle. No encouragement for the good days and no comfort for the bad days. Begrudgingly helping when I was sick or needing assistance when I was in severe hypoglycemia. I’m surprised the relationship lasted as long as it did.

So, we already knew what researchers have told us in this article. What do we do about it?

  • Talk about your feelings and fears, if not with your spouse, then with someone who can give constructive steps to deal with the issues in your relationship (and your relationship with diabetes). Not talking about it won’t help either of you feel any better. And you want to feel better, right?
  • Friends for Life, the annual conference in Orlando  that used to be just for Type 1 kids and their families is now offering an Adult Type 1 track with some interesting classes. Dr. Bill Polonsky will lead a Couples Discussion Group, while Jill Weissberg-Benchell & Kerri Sparling offers up a Dating and Diabetes seminar and Diana Naranjo will facilitate a Significant Others Discussion Group. Come hang out with the rest of us and get some insight as to how other couples handle diabetes and relationships.
  • Read more about the impact diabetes plays in relationships at dlife.com  – lots of great articles from people you already know.
  • Personal experience: The worst time to talk about diabetes is when a Type 1 is having a low. When John asks: “Why do you think you’re low?”, it results in me giggling, telling him that I’m not wearing socks, or growling angrily. Sometimes all three at once. Talking about diabetes after the diabetic has come up from a low and when the effects of adrenalin and cortisol coursing through the system can result in a coherent, cogent conversation (Look! Alliteration again!) and probably not a discussion about socks.

I’m married to my diabetes. No option for divorce or at this point, even a trial separation. My husband still married me, knowing this. I love him all the more for that. Even on the tough days.

If you take nothing else away from this, remember:

Relationships are hard.

Diabetes is hard. 

I say duh a lot. 

Got suggestions on dealing with diabetes + a significant other? Resources to add? Bring it on! 

Hooray For Boobies!

When I was a kid, I wanted boobs. Every night after I turned out the light, I quietly did “exercises” reciting the old saying:

“I must, I must, I must increase my bust.

The bigger, the better, the tighter the sweater.” 

Understand this: I was always the shortest girl in my grade. I was into ballet. I was flat as a board. President of the Itty-Bitty-Titty Committee. Despite the fact that every other female in my family was well endowed, I didn’t get the big boob gene. Even when I was overweight in my teens, I never hit a bra size over 36B. My friends used to complain about the backaches and hassles (and harassment) of having large ta-tas, and I know a few women who have had breast reductions. I was secretly jealous back then, but came to accept that I’d never be a SI model and just made do with what I got.

Until I got a lump.

In my mid-thirties, one night after I turned out the light (I no longer did “exercises”), I turned over to settle in and brushed up fingers up against my left side. Lump. A tiny one. Itty-bitty. Perhaps if I was a little more boobified, I wouldn’t have felt it later until it had grown, but because I didn’t really have much there, it was easy to feel.

The first doctor I saw told me that it was nothing to be concerned about, but just have someone stateside have a look if it grew. I was living in Europe, heading back to the U.S. and was relieved at the time to just not deal with anything else major going on in my tumultuous life. Yeah. Phew.

We all hear the statistics about one in nine women and breast cancer. The lump grew over the next few months and with it, my concern that maybe this wasn’t normal. So, I took my boobs over to have a mammogram and all hell broke loose. The mammogram tech freaked out quietly and then sent me to have an ultrasound. The ultrasound tech didn’t say a word as she slid the instrument through a thick layer of prewarmed (How nice of them!) goop, then quickly left the room. Enter the radiologist, who brusquely announced I had breast cancer and scheduled a core needle biopsy to “determine the course of treatment”, then sailed out of the room, probably to go kick some puppies or take candy away from a baby.

I don’t remember driving home that day. Or what I said to my family. I do remember buying books and doing a lot of research and wondering if I’d finally get to choose the perfect set of boobs with reconstructive surgery if I had to have a mastectomy.

Core needle biospies are uncomfortable if you metabolize lidocaine quickly. (Guess who does? This girl.) They kept injecting it and I kept on feeling every snip they took with the “needle gun”. A bag of frozen peas helped with the physical pain and the phone call later that day helped with the mental pain. No cancer. Diabetic fibrous mastopathy.

Let’s start by saying that this is no “one in nine women” for the general population, but for Type 1 diabetics, according to this informative Medscape article, it can supposedly  be found in up to 13% of us (But if you do the math, it’s about one in eleven, so we’re not far off.). If you’re a female diabetic who’s been kicking it with insulin for more than five years, lumpy boobs may be in your future and those lumps look like cancer on a mammogram. Only core needle biopsies can confirm otherwise.

So, what’s to be done? Excision of the lump doesn’t prevent other lumps from appearing and can end up making one’s boobs divoted. (Think stamping divots on a polo field or replacing a divot on a golf course. Neither are appealing to me.) More lumps can show up. About a year after the first lump appeared, a second one arrived in my right breast. Yippee! A lump fiesta!

Why do I think I have this complication? I’m more and more convinced that my inflammatory response with an autoimmune disease like Type 1 diabetes is in overdrive. All of my complications (save one) have to due with inflammation reactions.

Mammograms now happen on a regular basis. Thankfully, only the two lumps have taken up residence in my knockers, which is good because there wasn’t much much toom to begin with. When I became pregnant and was supplying milk for my little lactovore, I got the boobs I wanted. (Truth, men? I really don’t see what the fuss is about. To each his own, I guess.) I could barely feel the lumps, but now the boobs are back to my regular size (Sob.) and the lumps are back to being…lumpy.

Boobies aren’t talked about enough in the DOC. (Guys, stop laughing. This CAN happen to you. Men can also get diabetic fibrous mastopathy.) When I researched the diagnosis way back when, the Internet search spit out less than 20 results. Not a single one from a diabetic’s point of view. I could look at radiological slides and read scholarly articles. I wanted to know that I wasn’t the only one out there with lumpy boobs. Thanks to the DOC, I know I’m not. I think we need to do a better job, however, of sharing information about this little known complication, not just within the DOC, but also docs and nurses. (Yes. I’ve had to explain and give  links to my medical teams to look at. I believe a well-informed patient can be part of the education process in the medical profession.)

These days, I still want boobs, but I’m not looking for them to be big. Just ones without lumps.

P.S.  The title of this article is taken from the title of an album by Bloodhound Gang. Funny as all get out, but highly inappropriate to listen around small children and uptight individuals.

P.P.S. When I was deciding on the name of this blog and getting the URL, I thought ThePerfectD.com was just…perfect. As it turns out, if you don’t use the word “The” in the URL, it does talk about boobies. A lot. And not about, like, diabetic fibrous mastopathy. Yikes!