An Odd Year

January 18, 2010

I’m not a believer in resolutions nor a proponent of excuses. Neither could account for all of the missing posts. So, I as embark on 2010, I’ll roll through the highlights of 2009.

January – Traveling in Australia doing research, communing with friends and family; back at the Big U teaching classes and doing local community development research and advocacy in South Memphis.

February- teaching, writing, organizing & researching in South Memphis. Just thinking about it all makes me tired.

March – got in a little father daughter time at the women’s SEC basketball tourney in Little Rock, AR.Went to Santa Fe for a conference – wish I’d done my homework on the altitude before I agreed to give a paper🙂 I got a not so gentle reminder that I should never travel while in the throws of an infection – I seem to remember and then forget this one about every 18-24 months or so. Lesson,  Altitude + Infection + Flying = BAD.

April – see February

May – Saw my first set of graduate students graduate from our MA program; enjoyed the sunshine, the flowers growing in my front garden, and the company of my dogs.

June -Writing, writing, writing – the summer job of the tenure track junior faculty member.

July – Ciao – A lovely journey to the Amalfi coast of Italy and Tuscany (for pics go to http://expats.mazzy.com/g2/v/200907_italy/)  for another great locale and way to celebrate our anniversary (that was # 12). I never turn down a chance to see the mysteries of antiquity, natural beauty, and eat and drink fine things. A great way to vacate.

August – See June.

September – See April.

October – Hosted a “Porch Party” with an all time high attendance of about 65 friends. An impressive and fun turn out. Rough month health-wise. Coughed, coughed and coughed – minus 6 lbs. worth of coughing. Finally a 3 week round of IV antibiotics got me sorted out and I was back in action.

November – spent a long weekend in Hot Springs, AR for my birthday. Baths, massages, manicure and pedicure, good food, nice wine. Maybe 37 isn’t so bad? A much needed break. Grateful for everyday.

December – On the Streets of Philadelphia – first time in Philly. Neat town. Good conference; lots of reconnecting with friends and colleagues. Finished out one of the most stressful semesters of my life (including when I was in graduate school) by putting together my mid-tenure review portfolios. I suppose, every once in a while we need those moments of truth – we need to be asked to justify our existence, just to remind us of who we are and what is really important. Although, proud of my accomplishments and progress, there is nothing like putting the last two and a half years of your life into 3 ring binders to induce a little existential angst. It all kind of makes you feel small and insignificant. Christmas and time with family and friends, were a good distraction from this line of thought. San Francisco for New Years Eve – celebrating the good fortune of having good friends. Grateful.

So, on balance, 2009 at what cost (opportunity cost, health, family, happiness)? The nice thing about life is that it isn’t school and I’m not a CPA, so I don’t have to give it a grade or reconcile the books…

Here’s to 2010 – an even year.

Pump it up…

October 4, 2008

If you’ve taken the title of this email to refer to lifting weights or the slew of songs by this title, including the crooning Elvis Costello, the spunky Missy Elliott, or perhaps the best known “hit” by “D” (Danzel) you’re going to be sorely disappointed…The pumping up I’m talking about is with an insulin pump.

When I was first diagnosed with CF related diabetes, a physician friend of mine said, “I’ll give you a year before you get on the pump.  Everyone loves it.” At the time (16 months ago) I was only beginning to get used to checking my blood sugar all the time and giving myself shots.  I thought no way. I’m not getting on the pump. I don’t want something connected to me all the time. What would it be like to be on IVs and have my port-o-cath accessed and have this pump thing connected to me as well.  Ugh! So I did the shot thing and went on about the business of managing my blood sugar.  It was a learning curve. I was learning how to carb count and I was having some low blood sugar issues (which is not uncommon in people on insulin who are able to keep a tight reign on their blood sugar). Then in July 2007, while on vacation in Hawaii, I nearly died because of a hypoglycemic seizure.  During the night my blood sugar dropped to 25 and I was unconscious.  Luckily, my husband woke up because I was moaning/gurgling and saw that something was wrong.  He called the parametics, and out they came to the off the beaten path surfer’s hostal where we were staying on the North Shore of Oahu. They gave me glucogen and I woke up and they took me to the emergency room for observation.  We decreased my dose of long acting insulin and sent me on my way.

Obviously, I was fine, or I wouldn’t be writing this.  It did take me a few days to get all of my whereabouts back, but it seemed more or less like a no harm, no foul situation. Mind you, I didn’t know how horrifying I looked, laying in the bed unconscious. Nor did I experience the sense of panic he did at finding me that way. Needless to say, my husband wasn’t so fine. For months after, he wouldn’t leave me at home alone over night. I had to have my parents or a friend come and stay at our house. If I travelled to conferences, he insisted that I have a roommate. I appreciated the caution, but it did get tedious after a while. I hadn’t had a low blood sugar episode since the doctor changed my insulin regimen, but still I knew I would have to come with a plan to convince him that I didn’t need a night sitter to be at the house with me.

Enter the insulin pump.

The next time I went to see my endocrinologist, I asked him about the pump.  By the time I left his office that day, I knew I had to get on it. So what, you might ask, is the big difference between the pump and shots?  I was on two types of shots – long acting insulin, which controlled my basal rate (the back ground insulin that your body needs to keep all systems go) and short acting insulin, which is geared toward dealing with the insulin you need to use the food you consume.  The short acting insulin shots were working fine.  The long acting insulin shots were a little too unpredictable; they lasted for 24 hours and once you’ve taken it, you have no control over how they effect your body or blood sugar.  In contrast, the insulin I use in my pump is only short acting insulin.  I still need both basal (background) and bolus (food related) insulin, but I get all of that using the pump.  For my basal needs, the pump pumps a small amount of insulin in all day long (24 hours). If for some reason my blood sugar gets low, or I know I ‘m not going to be able to eat on my regular every 2.5 hour schedule, I can “suspend” the pump and it will stop giving me the background insulin. Because the insulin is short acting, within 30 minutes of suspending the pump  the basal insulin that I was getting has been used up.  So, there is less of a chance of a surprise, middle of the night extreme low like the one I experienced in Hawaii.  Good news!

I’ve been on the pump for 6 months now. And, I have to say that I do love it.  Ok, love is bit too strong. But, it has made my life easier and my blood sugar a little more manageable. My A1C has improved. I’ve gained some weight (which, I needed to do). I even managed to put up with being connected to two “devices” during a recent home IV treatment. There were a lot of tubes coming out of me, but somehow I managed.  I traveled to Spain for three weeks with it and it worked out great. I was able to adjust to the time change, the food differences, the long plane ride with minimal food without a problem (i.e. no hypoglycemic seizures).  I still perodically have trouble with low blood sugar, though, particularly during the day when get busy and can’t always keep to my eating schedule.  Not a huge deal, except that because of the earlier chronic hypoglycemia and the big seizure episode my body doesn’t always send up the warning signal that my sugar is dropping. So, I recently added (read yesterday) the continuous glucose monitoring system (which I had to FIGHT! the insurance company for 4 months and many letters to get them to agree to cover. They deemed it a “luxury” medical item and said that it wasn’t a medical necessity.  That story is a posting for another time).  So far it seems to be working ok.  And, it adds an additional piece of mind – if my sugar drops below a certain point, an alarm sounds to warn me. Ah technology.

Just call me cyborg. I’m ok with it…

Why all the silence?

July 9, 2008

Sometimes silence is golden, other times it’s worrying, sometimes it’s broken.  My silence in recent months has had a few readers worried.  I’ve been caught up in the busy-ness of a new job, research projects, and just trying to keep up with myself.  A lot has happened since my last post, 6 months ago.  I won’t go into all of that now – look for new posts in coming days.  But again I’ve been prompted to write out of necessity.

Two silences have been broken – the one on this blog and one from an old friend.  After several years of hearing nothing from one of my oldest living friends with CF, I got an email from him. We’ve talked, and caught up some and have committed to keeping the connection open.  I hope that he will want to contribute his stories and experiences to this blog at some point (Please BB?)

Aside from this, the issue of silence has been on my mind lately.

Recently, during a run to the local Apple Store my husband was introduced to a young, 18-ish woman who had CF.  The woman who introduced them was a family friend, she was hoping that I was there too because this woman had never met an adult with CF that was “doing something with their lives.” I think she meant someone actively involved in work, family, travel, and other aspects of life.  The young woman was quiet, she did not say much about herself or having CF.

Of course, this frustrates me.

I have to ask –  What are the doctors telling these young people or not telling them, as the case may be, about what to expect as an adult with CF? Why all the silence about living with CF? Why aren’t young adults exposed to the diversity of life choices, experiences, and possibilities that people like me have to share? Why are doctors talking more about all of the possibilities?

Why don’t you talk more about having CF – this is the question that my husband asked me after meeting the young woman.  If I were you, I wouldn’t be afraid to say, “Hey look at me. I’ve got CF and look at what I’m up to?”  My first response is to say that I have never talked about having CF very much.  It has always been a close friend and need to know kind of thing. I have never wanted it to be the thing that defined me – that people know or remember about me. When I was younger, I worried that the other kids would make fun of me. That classmates would think I was weak, different..sick. As I have gotten older, not letting people know has had interesting consequences and from time to time is a liability.  I cough, frequently.  If you didn’t know better, you’d think I was sick all the time.  People do, and I let them.  Sometimes they comment, saying “still got that cold” or “can’t shake that cough.” Rather than just saying, I’ve got CF, I will often avoid what I think will be a longer conversation by telling people that I have asthma and allergies.  My symptoms are not unlike asthma and I do have allergies, but it’s not the same. In graduate school, I was hesitant to tell most of my professors about my health because I worried that they would feel sorry for me, treat me differently, or give me special treatment.  Now, I look back and wonder, what difference would it have made?

I haven’t figured out exactly how to handle this issue in my current job.  My health is in a different place than it was when I was in graduate school.   Everyday management and recovery from flares are much more complicated and time consuming than they used to be.  The reality is that I can’t do everything that I used to do (most people, healthy or not, can not do everything at age 35 that they could do at age 25). And, I am tired. I have told the people that I think need to know, but maybe everyone in my department needs to know?    Will my slow down and CF care needs mean to my career advancement? Hmmm. What protections do I have?  Oh, the questions of a thirty-something…

What’s next?

January 6, 2008

Perhaps it sounds strange to call my acute awareness of mortality a blessing, but it really is. One of the most important insights I’ve gained is that life is about choice. We don’t always think about it that way, though. We get busy with the everyday stuff – picking up the dry cleaning, going to the grocery store, buying a new sofa, answering email, feeding the dogs, going to work – and we forget that each of these mundane things is a choice. It’s easier to see see choice in the bigger decisions – Should I get married? What do I want to be when I grow up? Should I have a baby? People recently diagnosed with cancer or another potentially terminal condition usually get it. Theirs is an awakening of awareness – “What have I been doing with my life?” “What does it all mean?” And most importantly, “If this is it, what else would I rather be doing?” Here’s where I think the blessing comes in.

My take on living with a chronic illness, and thus regularly being reminded of my mortality is that I have come to see living as a process of choosing – given my circumstances, how can I live the best quality life possible? For me, the best quality life possible involves, spending time my terrifically supportive husband, my parents, and my friends, teaching, doing pottery, writing, loving on my border collies, and traveling. Especially traveling.

I was 14 when I took my first trip outside of the US. I went with my church choir on a tour of Jamaica. It must have been nerve wracking for my parents. But, I caught the travel bug and since then, either alone or with my husband, I been all over the world. I’ve traveled to Russia (when it was the Soviet Union), France, the Czech Republic, South Africa, Peru, Australia (where I lived for a year), and Turkey, New Zealand, Costa Rica to name a few –but this is not everywhere I want to go. Our next trip will probably be to Spain. I’m also planning to go back to Australia this summer to do some follow-up field research. There’s is something so invigorating about being in a place where you don’t know the language and everything is different. Everyday becomes an adventure, and sometimes a challenge – finding a place and foods to eat, exploring new places, meeting new people. There’s nothing like the existential reality check of travel.

My parents have gotten used to my desire to travel. My doctors have too. I used to worry less about how I would do my treatments on the road, but now planning for this aspect of my life is simply a part of getting things organized to pack. Is it a pain? Sure. Is it the worst thing ever? No. I talk with my CF doctor. If necessary, I do a pre-trip round of IV antibiotics to boost my resistance to catching a bug on the trip. I get my breathing treatment equipment and supplies together. Nebulizers and air compressors for inhalation treatments have gotten smaller, lighter and can now be powered with re-chargeable batteries. This summer will be the first time I’ve traveled with my Vest. In the past my husband has done back-clapping postural drainage. The newest question mark in my various health management strategies will be my insulin regimen. Like all travel, it’s a live and learn kind of thing, and it’s worth it.
How do I make it all work? I’ve always negotiated with my body – a tit for tat kind of bargining. If I do this, it will cost that. In high school, this went something like, get me through the semester or through prom and then I can be sick and go on IVs. Negotiating with the doctor went something like this too. More recently, these conversations are often on a more practical and unconscious scale. If I work twelve hours a day for seven days straight to meet a deadline and ignore the inevitable hunger pangs and wheezing, or, if I spend the weekend staying up late, having a drink, and enjoying the company of friends, I pay in fatigue and congestion. I’ll have to spend more time and energy paying attention to getting more sleep, taking in more calories, and doing things to get the gunk out of my lungs. It can sometimes take days, even weeks to get “caught up.” But, if I chose to go to bed at a reasonable hour, make time for the gym four times a week, eat plenty of healthy high-calorie foods, and take time on the weekends to rest, then I can do X, Y, and Z. Learning how to balance what I want and what my body needs is constant game of stratego, and I can’t say that I’ve perfected it. But, these are my choices to make.

In a way, these choices are about time – is this how I want to spend it?

I want candy…

December 24, 2007

I’ve never been a fan of cake, cookies, or pies. But, candy, now that’s a different story…I’m not a sophisticated candy lover. No need to waste Godiva, Toblerone, fudge, bonbons, tins of gourmet hard candies on me. My taste buds fall more along the lines pixie sticks, sweet tarts, and really anything carrying the Willy Wonka moniker. Perhaps my love of candy started with the hard ribbon candy that my parents used to use to bribe me to take my digestive enzymes. Or the quarter my mother used to give me at the grocery store to buy whatever I wanted, which was almost always a Sugar Babies, Fun Dip or a box of Tart N Tiny. And, my preference for what I call, “little kid candy” (but think of as sweet treats that feed my inner child) has followed me into adulthood. Among my favorites are chewy spree and Haribo Gummy Bears, despite the chuckles from friends. But I’m used to this. When I was doing fieldwork in Australia, it was the source of ribbing among Koori children whose parents always jokingly reminded them that they would have to share their bag of lollies with Auntie Katherine.

So, why all this chatter about candy? The irony. In February I was diagnosed with CF Related Diabetes (CFRD). This type of diabetes is relatively common among adults with CF (and, in case you’re wondering, has nothing to do with my candy consumption). Our pancreas does not create the enzymes to break down fatty foods, so we have to take supplementary enzymes to aid in our digestion and absorption of food. It seems that one of the adult extensions of this is that the pancreas stops producing insulin.

Initially, I was really irritated and a little depressed about this new diagnosis. I kept thinking, “Don’t I have enough treatments and medicines to worry about already? I don’t need anything else to worry about.” The doctor instructed me to start checking my blood sugar regularly put me on a long acting and a short acting insulin. This regimen seems to be working pretty well.

So here I am. After a number of years as a hypoglycemic, I am learning how to deal with the low blood sugar that is a side effect of taking insulin. I’m also figuring out how to balance my need for a high calorie diet (approximately 3200 calories a day) and controlling my blood sugar. For those who have any experience with diabetes, you know that this balance presents an unusual and interesting problem. I have been used to eating pretty much anything I wanted. Like most people with CF, I am skinny but not too thin and I will probably never be over weight. When I’m not having a flare, my weight is about average for my height. Several years ago I lost 12 pounds during a bout with pneumonia. The doctor’s advice was eat fudge or hamburgers and fries – anything that was high in calories. It took me 18 months to gain back that weight. I did it with scandishakes, milky way bars, and a nightly bowl of vanilla ice cream. Obviously, I wasn’t thinking about sugar or carbohydrate intake. Now, I do factor that in, but it doesn’t mean I’ve given it up completely. At first, I tried giving up carbohydrates. That lasted about a month and I felt hungry all the time. I lost 5 pounds right away. I began to pay attention to how what I was eating was effecting my blood sugar, which meant checking my blood sugar frequently (too frequently, maybe). I have done some reading, talked to others with diabetes, consulted with my doctor and a nutritionist, and adjusted my approach since then. I have come to terms with the fact that , “Yes, I do have one more thing to keep track of.” And, I’ve also realized that it’s going to be ok.

Part of my motivation for writing this entry is that a very close and life long friend of mine, Debbie Busler, is running in the Flora London Marathon in April and is raising money for Diabetes UK (Debbie is currently living in London). She is dedicating the race to Pat, her husband (for lack of a better category) and me. Now for the plug – if you’d like to sponsor Debbie and follow her progress as she trains and prepares for the marathon go to http://www.justgiving.com/debbiebusler.

Despite accepting my diagnosis, treating my diabetes isn’t always easy. One of the most difficult things has been figuring out which rules about diabetes don’t apply to me and how to calculate the amount of insulin I need. I am trying my own version of carb-counting, making smart choices about the carbs I eat, but also countering the effects of eating sugars and carbs with insulin. I have a busy and sometimes uneven schedule, effecting when I eat and forcing me to pay very close attention to my blood sugar. My biggest fear is that I pass out in front of my class while I am in the middle of a lecture on the Yolmo of Nepal or the definition of community for Haitian immigrants in Brooklyn. I do what I can to ensure that this won’t happen – eat before class; carry glucose tablets with me everywhere; and keep a glucogen kit handy. Just in case, though, I wear a medical alert bracelet and trust that an observant student or colleague will see it and figure out what is happening.

Everyday is an adventure….I feel like diabetes has put me in the middle of a great, living science experiment. A constant cycle of trial, error, and correct. I suppose that is really what life is about. It is certainly reminds me that I never have as much control as I’d like to have or as I think I have. Rest assured, this won’t be the last you read about CFRD on this blog. The more I learn, the more I’ll share. In the mean time, I want candy.

Be Here Now

December 16, 2007

I had a CF check up last week. The recent weather and allergies have left me with horrible sinus troubles, which in turn mean crackly, gunky lungs. I haven’t been feeling all that sick, so it was a little disconcerting to learn that my lung function was down from my previous visit. I was thinking about this today when it occurred to me that I don’t know what a person with 45% lung capacity is supposed to be able to do or not do. I thought about researching it, but then thought better. I could worry about this, but I won’t. I decided that I’d just keep doing what I was doing, which at the time was vacuuming the house.

“Be here now.” It’s an useful yoga mantra, as I breath (or wheeze) in and out through downward facing dogs and cobra poses. “Be here now,” which in an alternative translation could be “keep doing what I’m doing” is also a life philosophy that I aspire to.

Mortality can hit you like Road Runner dropping an anvil on Wiley Coyote’s head. For someone living with a chronic illness however, I’m not sure that the bar between life and death are ever fully out of sight. I like to think about my sense of mortality, which sometimes sits like a monkey on my back, as a blessing. The existential questions, and any insight I might have into them, provide an undercurrent in how I go about my life. But, when I breathe and repeat, “Be here now,” it’s not about cherishing every moment or doing all the things I’ve been putting off in the rush to the finish line. It’s actually about letting go of all of that.

Other people’s ideas about the limitations created by disease can be very powerful, particularly if they are come from “experts.” Too often when someone is diagnosed with a serious illness, they let other people’s expectations define and limit how they respond to the illness. I’m lucky that my pediatric CF doctor and my parents, without sugar coating the situation, never cited CF as a reason I shouldn’t or couldn’t pursue something. Thankfully, they didn’t think about CF that way. They were proponents of my taking ownership of and responsibility for my condition (and, that’s what the doctor called it – “a condition,” not a disease), figuring out for myself my limitations and setting my own boundaries.

As I have gotten older, my boundaries – the edges of what is good for me or what I can physically do – have become more defined. All the same, I get up in the morning, do the breathing treatments and whatnot that make the day’s activities possible; and then go about my business (these days my business is teaching cultural anthropology at a local university). This isn’t always an easy task; I don’t mean to make it sound like it is. But, I am resistant to putting too much time into worrying about the potential restrictions. Worrying about what I should or shouldn’t be able to do as someone with severely compromised lung capacity. I’m more interested in seeing what I can do today – who I can learn something from; who I can teach something to; where can I go; what I can ask my body to do and how it will respond. It’s a lot like putting one foot in front of the other or taking one day at a time. It’s a willingness to walk into the unknown, without forgetting what has already been established. It’s a desire to declare life, to be here now.

35

November 5, 2007

Today is my 35th birthday. And it’s my birthday that brings me here to my desk to write, while my husband watches the Simpson’s in the other room. But don’t stop reading yet. I’m not going to rant about getting older or wrinkles or the youth with their overly short skirts and baggy butt pants. I’ve started this blog to fulfill a promise I made to myself to write about living as an adult with cystic fibrosis. And I started it today because today I have officially lived beyond my life expectancy.

The idea to write about what it’s like to live with CF has been with me for a long time, but I never wanted to delve into it, preferring to use my mental and emotional energies in graduate school. Then, it became one of those, once I finish my dissertation… once I get a job…; once I wash the dog… kind of things. Then, one afternoon I had a conversation with a young woman with CF that finally gave me the courage to begin writing. We were sitting in the waiting room at our doctor’s office, periodically we watched each other from across the room. I suspected she might playing the “I wonder if s/he’s got CF” game I often amuse myself with in the waiting room, trying to pick out the patient from his or her family member. For her, it wasn’t an idle guessing game; from across the room, she just flat out asked if I had CF and when I said yes, she said, “Do you mind if I ask, how old you are?” When I replied, “32, almost 33,” the first thing out of her mouth was, “you’re a miracle.” She was 18, with long brown hair and thin, struggling to put weight back on after a “flare” that put her in the hospital, and a little afraid. I was caught off guard. Then she shared that she had never met anyone with CF as old as me. She was in disbelief and, I think, a little hopeful. She added, I can’t wait to tell my friends, they’ll be amazed. I was a bit saddened by her surprise; it was as if she had never considered the possibility. At that moment, I knew I had to begin writing.

Even still, it has taken me two years to come to this point. But, here we are.

When I was diagnosed with CF in 1973, the doctor cautiously informed my parents that I might live to be seven. A huge blow to new parents that, thankfully, they took with conscientious hope and a determination that they passed on to me. In this context, being thirty-five seems very dramatic; but in fact, today, about forty percent of people with CF are living into adulthood – some well into their thirties, forties, and even their fifties. Not everyone, of course. Many in my CF cohort – the would be thirty-somethings – left this world more than a decade ago. It was hard to watch them go and I miss them still. I’ve been left with a touch of survivors’ guilt, which, I suppose, is why I am so uncomfortable with people referring to my life as amazing or a miracle (the “m” word). It’s just too much pressure. Every celebratory milestone event seems too weighed down with mortality, that this might be the last big thing. And at the other end of the spectrum, every rough spot comes with the anxiety that it won’t be possible to bounce back. Sure, I allow myself to wallow in self-pity from time to time, but only for brief moments and then I remember – I’ve got dreams to follow, things to do, places to go, people to see. I look up and go forward. To me, there is no better way to honor and remember my friends.

So, for the next year (and maybe beyond) I have committed myself to keeping a weekly reflective journal on what it’s like to live with CF.

Happy Birthday.


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