DAY 13: D.R.P.A.T.T.I.E

Thank you Carl
for the Acronym

D on't

R epeat

P atented

A ssumptions

T hat

T ake

I n
E veryone

DAY 12: Hey me from the past...We are still here!

Dear Me from the Past,

I wish I could go back and tell you how beautiful you were and that you didn't need to make such drastic changes in your body in order to be acceptable to others. You were (we are) a bright, talented, kind and loving person who has had a lot to offer the world.

The journey from you to me has been fraught with burdensome lows and accelerated with victorious highs, but I cannot help but wonder how much better it might have been if you had understood that we have dignity when I was your age.

Having said that, we are doing okay. So the most important thing I would have you to know is that we are tough. We have survived lots of setbacks. We are still here.

That fact. That knowing we can survive, we can thrive, we can learn. That is the basis for my faith in the future. That is what makes life moving forward much easier than it appears some days.

Love,
Me from the Present

Day 11: Gadets! The Accu-Chek® 360 Android App Reviewed

Most people regard me as a diet failure because of my current weight. But the truth is I was really good at dieting. I like projects and going on a diet was always a project for me. Most of my diets did not end because I went on a binge or fell off the wagon. They ended because I was told by a medical person that if I continued starving myself, taking drugs and/or over-exercising, I was heading for the hospital. Low potassium, trouble with kidney functions and severe viral infections were the usual catalysts. Of course, once eating "regular" again, I quickly gained. I know now that most likely I had subclinical hypothyroidism and without thyroid treatment, I was messing up my metabolism even more. For those who think I am disabled because I am fat, please understand that my health problems began when I lost 130 pounds (half my body weight), not when I gained weight. In my early adult life, I was athletic and health even while fat.

I tell you all this to give you the background on why I really like my new Android app the Accu-Chek® 360. Because of my background of disordered eating, I am leary of doing any kind of "dieting." Having blood sugar difficulties in my 50s first put me in a tailspin emotionally.

I have worked hard to know my body in this area. I eat when I am hungry and finish when I am full (something others call "intuitive eating," I just call it "natural"). If treating my metabolic disorders meant "going on a special diet" then I was trapped. It didn't make sense to me that the behavior that got my body into this mess would get me out of it. I sought other answers.

Through a combination of medications, exercise and medical monitoring, I do have both blood sugar and thyroid under control (as well as cholesterol and blood pressure). I continue to eat when I am hungry and finish when I am full. I found that I did better if I waited a little longer to determine how hungry I am and what I wanted to eat. Usually, the answer is clearer and has less impact on blood sugar when I do. I also know that exercise is key. I stretch every morning and I lift weights. I hope soon to add some aerobics to this, probably deep water aerobics because of the nerve damage in my left foot. What has held me back is a place to work out with a warm pool.

But when I found this app for my tablet, a lot of stuff has come together. Mostly, I think I find it emotionally satisfying because it is a project and it has a measurable-do-it-yourself-style of defining success.

Basically the app allows me to record blood sugar, exercise, medications and supplements, health status, stress levels, pain levels, blood pressure and pulse rate. If you are into carbs counting, there is a place to do that as well. I just record whether my meals were small, medium or large. Also, I do not weigh myself, but there is a space for recording your weight. I record my pulse there and just ignore the "pounds" designation.

I do not take insulin, but insulin records can also be kept, so I would assume this little gadget would be extremely valuable information for those who have to adjust insulin depending upon food and exercise. It has a place for "pair testing" to allow you to further track insulin effects.

If you take a lot of pills (mostly supplements) on a daily basis, this is an especially good gadget. It remembers previous entries and so all I have to do to keep a medicine/supplement record is check boxes. Since I can have some memory problems when I am in pain, having a record of whether and when I last took medicine is important. This aids in that extremely well.

There is also a way to send the results over a specific period via email. I have not used this feature yet, but I would assume if one is working with a medical professional this would be a nice way to provide data for them so they can assess your situation more fully.

The thing I enjoy most about this is that I can look back over time and see the effects of stress, sleeplessness and exercise on my health, especially my blood pressure. BTW, as long as we are talking about gadgets, I use a wrist cuff to measure my blood pressure. I bought a Kroger brand for $35. Arm cuffs hurt me to the point of crying and were extremely dependent upon who was doing the measuring, which made my blood pressure look much worse than it was. By monitoring my own blood pressure, I have been able to convince doctors to stop giving me high doses of medication that were making me so dizzy, I could only take before bed. I suspect I had low blood pressure for a few years based upon over-medication. I now take the cuff with me to doctor and thus avoid the arm cuff. I learned my blood pressure and pulse are higher at the doctor's office than when I am measuring at home (look up "white-coat syndrome"). There are problems with a wrist cuff under reporting, so I aim for about 10 points (bottom number 70) below "normal" just to be sure.

What I've learned from using this app is that my pulse and blood pressure are greatly influence by my sleep patterns and my stress levels. When I am getting enough sleep and not overworking, the numbers are much lower. High stress weaks drive the readings up, especially at night. Meditation helps.

So my project oriented, detailed-loving, objective-data-loving self is happy that I have ways to measure my progress in improving my health that do not rely upon weight or BMI.

Finally, I have no idea if this app is better than any other of the glucose monitoring apps out there, but I've used this one for about 3 months and it has made a difference in my health. I highly recommend it or finding something similar to it, especially if you love projects and control.

DAY 10: Wordless Wednesday--Me

Day 9: Family Caregivers are Unsung Heroes, Let Me Tell You About Mine

Today's call for writing asks us to post tips for caregivers. I don't really have much in this area. It is a one-day-at-a-time kind of life when one or both people in a couple are dealing with chronic illness and disabilities.

Instead of tips, today I want to pay tribute to people who do this and do it willingly, lovingly and with great stress and difficulty. Many times, being devoted to someone else's health is detrimental to one's own health.

In March 1997, I got sick and didn't get well. What seemed at first to be a bad stomach virus, turned into months of my being bed-ridden, weak and catching every infection from any kind of bug I ran across (fungal, bacterial, viral). In a word, I was "dependent."

I won't go into all the details of what happened that year, but I do know it was the beginning of an odyssey that has so far lasted 16 years with no end in sight. My husband, Carl Wilkerson, and I had only been married 5 years when all this began. He is 8 years younger than me, so he was only 31 years old.

People often will ask me or him or both of us what he "does" for a living. They cannot know how insensitive and painful that question is. He does a lot of things. He did a lot of things. Many of these things are unpaid and yet, as I have just got hired for the Fall in a full-time teaching position, I will say right here and right now that my Master's degree, my PhD, the research work I've done, the teaching work I've done and this new job would not have been possible without the loving care and support that Carl has given me.

He has sacrificed a lot to make me functional and successful in my endeavors. While my mind knows that fibromyalgia is way more complicated than this, I sometimes feel tremendous guilt that he became sick in 2008. As a medical sociologist, I know the research that shows that caring for a family member is detrimental to the health of the caregiver. I often wonder if his life would not have been better without a disabled wife. But because of his heroic choices, neither he nor I will ever know.

I think it is toughest on male caregivers because so much of the work they do is considered "women's work." Men who clean and cook and tip-toe around the house and put their own career goals in second place are often viewed as "weak" or "slackers" by the rest of the world, who want to see a resume to measure a man's worth.

I remember an essay in a book called Dropped Threads that basically stated that if women wanted men to share more of the domestic tasks in family life, they needed to stop considering men who do these things as "not good enough." Carl is a hero and I have little tolerance for those who might suggest he is anything less than that. We've been together 22 years all told (married 21 years in October) and I consider myself to be one of the most fortunate of people because my partner in life has proven his love to me beyond a doubt and has kept his integrity and dignity while doing so.

So here's the only advice I have to offer, not to the caregivers of the world, but to those who think they know someone they just met because they have neat little categories to put people into: Don't assume you know what you think you know. People do so much more than for which this world gives them credit. They are not going to shout this to the world or answer inane questions like "what do you do?" with a full description of life with a chronically ill spouse. 

In fact, don't ask the question at all. It is a stupid question. People "do" lots of things. We are not our jobs. We are not our titles. We are warmth, loving, generous, heroic and persistent people who take things one day at a time until they add up to a lifetime.

So let me say, publicly and loudly, thank you, Carl Wilkerson. You are my hero and I will use all my power to not let you be "unsung." That you have been a creative producer and accomplished so much in the past 17 years in spite of my illness, my disabilities and yours, is a testament to your strength, character and talent. (I love you forever.)

===========================
Oh, and if you, the reader, really care about this, you might support more funding of home care, so that so-called professional caregivers can give a family caregiver a break sometimes. Some more forward looking countries than the United States understand the value of the free labor family caregivers provide and also understand the cost-savings of supporting these heroes so that they can remain healthy.

DAY 8: Neuropathy is a Porcupine

Sometimes my body is soft and I am cuddly playmate.
My pain is calm.

Sometimes my body is numb and I cannot appreciate what is around me. My senses are dulled.

Sometimes my body is prickly and sharp and anything that touches me not only shoots pain through me but pushes you away.

I don't mean to be a sticky mess.

Some days are just not my day and I want to be left alone, please.

DAY 7: Really? Uh, Really?

TOP 7 BOGUS CLAIMS I'VE HEARD ABOUT MY HEALTH:

1. You are not disabled, you are just fat and lazy. (or "you just need to lose weight.")
2. If you ate right (insert description of "eating right"), your foot would heal.
3. Your neuropathy is from (insert underlying condition) and all you have to do is control your (insert symptom of the underlying condition) and your pain will go away.
4. You need to cheer up. Depression is a part of (insert condition).
5. You are "dependent" on that (insert any pain medication name). Don't become an addict.
6. 99% of all people who get this will be better after (insert name of treatment).
7. You can make money and improve your health (insert latest Multi-level Marketing scheme).