Friday, July 20, 2012

I'm Done

I will no longer be posting over here, so Purple Haze has come to an end. To all of those who left supportive comments, my heartfelt thanks. The first couple of years of posting here were entirely wonderful for me. I had never talked to another soul about db and the opening in my heart and soul were priceless. I will still be over at Tu Diabetes, where I feel at home. And, still working on my two other blogs, which are on using creativity to live simply, and finding the strength to cope with multiple life-threatening health conditions. Peace, joy, and fulfillment to you all.

Wednesday, July 18, 2012

Wordless Wednesday

Column 1 = date of the month Column 2 = high temp Column 3 = low temp
Yesterday, after being gone all day, I came home to this box of insulin sitting in my non-airconditioned foyer.

Monday, July 16, 2012

TD Chatroom to the Rescue

I woke up Saturday at 96. Fabulous. Since it was Saturday I planned to go back to sleep after taking my lantus. I take a split dose, so I injected 12 units and went back to bed. I woke up an hour later at 55 and had a juice box. Then I checked into the Tu Diabetes Chatroom and talked a bit, but got tired and went back to bed. An hour later I was at 40. Gosh, this was very strange for me. I almost never have problems with lows in the morning. Suddenly I thought maybe I'd reversed my vials and taken 12 unit of Humalog. I keep both insulin vials in a pouch on my kitchen table. I went into the kitchen, and the vial of Humalog was sitting out by the pouch. Not the Lantus. Shoot. I was in my "just standing there" phase, where you just stand and really don't know what to do or even which direction to walk. There have been times when I think I've just stood there for at least 30 minutes. Went back to the chatroom and my friend Marie was there and I told her what I thought might have happened. "Eat", she said. Well, I'd already had another juice box and two big handfuls of Skittles. Then my friends Doris and Linda came onboard, along with a new friend I'd met the night before, David SQ. "Eat", they said. My befuddled thinking was telling me that I didn't think I needed to eat. Well, the Skittles were gone and so I took 8 glucose tabs. It was suggested I have some treats but I can't keep anything of a treat nature because I'll snarf it down without restraint. "You need some protein". I forgot that I had some eggs, so put a couple on to boil. "Call someone". I called my sister but she doesn't get it. Lost cause. "Be sure the door is unlocked in case you have to call the paramedics". I certainly hadn't thought of that one. "Don't drive." "Go test now and come back and let us know where you're at."Don't go shopping until you're absolutely stable." I retested and was at 72 so signed off, telling everybody that I was going to also have some chicken and then wait awhile before I left. 30 minutes later I was at 170. Ok, I'm stable. I was walking down the stairs to the door and my mouth started getting numb. 42. Say what? Then I remembered that I had just gotten done telling everybody that I was going to a Thai restaurant for supper, but couldn't have any rice because it spikes me. Rice! Yes, I had a big box of Minute Rice and cooked a big pot and ate it. 30 minutes later, 55. Felt awful. Finally the rice kicked in and I was at 190. Feeling like I'd been through a war. I made it to the restaurant but was so exhausted it wasn't much fun. If you're not familiar with Tu Diabetes, go over and check it out. TD is a large community with many compassionate, selfless and knowledgeable people. Something for everyone. It has been an extraordinary blessing for a number of people, including myself. Now, had it not been for the chatroom, I might have just stood there and it could have ended badly. Maybe, maybe not. But the care and concern of these 4 people was priceless. Dang it, thought I had the paragraph problem solved. Guess not.

Wednesday, July 11, 2012

A Long time

It was ten years ago this summer that I stopped driving. I always had used Honda Civics - they were reliable and got good mileage. My mechanic was always offering to buy them from me (that's a good sign, no?). My last one, Ignatius, was a deep hunter green. In late 2001, I had an exam with my retinal specialist. He said everything looked good. A month later, I woke up with what seemed like the contents of an entire pepper shaker inside my eye. I'd had a major hemorrhage and was immediately lasered. Usually, when the retina is lasered, the extra vessels shrink and die. But my extra vessels had latched onto the vitreous (the gel like material inside the eye) and as they shrank they pulled my retina off its backing, causing a full detachment. Since I was still bleeding, I did not realize the detachment had occurred, and at my follow-up visit they did an ultrasound and he grimly said to the nurse "it's off - let's get set up for surgery this afternoon". So, I was operated on and when I woke up he said "now you're gonna have to lay flat on your face, not moving, for 7 days". Say what? A nitrous oxide gas bubble had been placed in my eye, and in order for it to hold the retina in place my head had to be down so it would float to the top. I was sent home with an enormous bottle of percoset. I was in little pain, but I took them 'round the clock for sedation. They worked. I had not realized that the doc told my mother he hoped the eye would get back to "seeing shapes". On my first post-surgery visit, I read the middle line on the eye chart and he said, "you've gotta be kidding - you can actually read that?". Over the next few weeks my vision improved to 20/40 with corrective lenses. But I was bothered by one thing - it was sort of tunnel vision. I kept waiting for the peripheral vision to come back and then finally asked him. He told me that the edges of the retina had to be cut so there was a smooth surface for healing. The side vision was gone. It would not one back. And, by the way, no driving. I screamed "but I can see fine straight ahead". He agreed, but what would i do if I couldn't see a car that was in the next lane? Or worse yet, a pedestrian? The grief was severe. A big part of my life had been taken away. I sold Iggy to a friend's son who needed something reliable to drive to Alaska. He is still working well. I had always taken the bus to work, and enjoyed the time relaxing with a book or knitting. But to have no alternative took a lot of adapting. My life runs according to the bus schedule. I can no longer jump in the car and do an errand. I have to stop by the grocery store every day to carry just a bit at a time. I can no longer go to the regional parks where I enjoyed the solitude of being in nature. If I were to ever move, it would have to be in a neighborhood with good bus connections. When I go t the State Fair, I bump into people. When I'm with my niece, she has to walk a foot ahead of me or else I can't see her (and, of course, holding hands is not an option). What hurts a lot is when friends don't remember. My truest long-time friend phoned a couple weeks ago to say she'd seen some magnificent wild iris blooming in a bog in the distant suburbs and that I should check it out. How would I get there? Take a $100 cab ride? When my mother was dying, I had to go to visit her according to my sister's schedule, which wasn't very often. Had I been able to drive, I would have gone every weekend. Sometimes when I see a Honda Civic parked on the street it makes me shed a few tears And at the time I gave up the car, I had no idea what further losses were to follow. Nor do I now. I hate diabetes. PS - I just got a new IMac and it seems to have taken away all my paragraph breaks.

Sunday, July 01, 2012

The Family.

A couple weeks ago we had a wonderful 60th anniversary celebration for my aunt and uncle in my home town. They had no kids of their own so we put in a lot of effort to make it extra special.

Everything was flowing smoothly and suddenly I noticed that my dad's cousin D was there. She yelled hi to me across the room and I headed in the other direction.
D has a son, K, who was diagnosed the same year as me - 1974. I was 21 and he was 1. K had a stroke 10 years ago, which left him blind, and has been on dialysis for 6 years. He cannot get on the national donor registry because his health is too poor. They told him he'd have to find his own kidney.

I did not want to talke to D. I did not want to hear about K. Couldn't there be just one day when I wasn't reminded of the devastation that db has caused in my family?

I didn't realize that she had sat down and I walked right by the table. She said, "Kathy, come sit by me - let's catch up".

We started talking and she said she was thrilled to hear I'd gotten off dialysis. We talked about control in the old days and how K was in denial (well, just like I was). He is not getting the proper db care in the nursing home, where he is the youngest resident. She is looking to find him one with younger people and more things to do. I told her why I prefer a syringe over a pen, and how earlier that week I had 5 vials of insulin freeze when my fridge went wacky. She asked how much I was bolusing for the cake. We talked for nearly an hour, and, I then knew that she got it. She got it all.

She lives in northern Minn and I plan to start emailing her regularly. A blessing that serendipitously came my way.

Can you see the family resemblance here?

Here is a pic of the happy couple - notice that my uncle's rose is hanging upside down - it was all day. Sigh.

Wednesday, June 20, 2012

Lovin' the Questions

My longtime dear friend Zazzy has tagged me with some questions. Thanks, sister, for giving me something to write about!!

What is your favorite color?
Much as I feel I'm stuck in a rut, it's gotta be blue. All shades in general, but especially that sapphire blue tone that the sky gets just before sunrise in early spring and late autumn. When I was still working, I'd take the bus at 6:15 and was able to catch that color for a couple weeks. Sublime in every way.

What is your favorite animal?
Dogs. Big slobbering labradors. Tiny yippy lapdogs with ribbons in their hair. Stately standard poodles. Weiner dogs. Old jowly beagles. Armstrong, my neighborhood Afghan hound whose owner must spend a fortune in professional grooming. Pugs - I love their smashed in faces and curly tails.

What is your favorite drink?
Coke Zero with a lot of lemon. On rare occasions when I drink alcohol, champagne or a nice pinot grigio.

Facebook or Twitter?
Well, I've only done Facebook and I just love it.

Favorite passion?
Helping street people. Yes, I know this can get a bit subjective at times. And sometimes backfires like last week when I bought a man a turkey sandwich, apple and bottled water. He was sitting on the sidewalk outside the store. When I presented it to him he said he would have rather had ham and cheese; he couldn't eat the apple because his teeth were in poor shape; and he'd really like a cup of coffee (it was 91 degrees - go figure).

Giving or Receiving Presents?
Both!! I used to agonize over finding the perfect gift for someone, but now I don't. If I see something the person would like, I get it. There doesn't have to be an occasion attached for gifts.

Favorite Day
The Saturday of a three day weekend, when it seems like the entire city has emptied out and gone to their lake cabins up north. I love the feeling of quiet emptiness and the lack of lines at the hot breakfast places.

Favorite Flower
Purple iris. I have it tatooed on my belly. Many years ago I had a tai chi teacher who was also a florist. One day he brought each student a flower that he'd selected especially for them. He gave me the iris and said it represented the flower of a warrior, because its leaves were shaped like a sword. To this day, whenever I see one, I feel as if the Source is telling me that everything's gonna be okay.

Wednesday, June 06, 2012

My Creepy Arm

I met a former co-worker at the Mall of America for lunch today. She also is living with a cancer diagnosis so we had a lot to talk about. I was proud of myself because I spent no $.

I decided to take the train downtown, and just as I was boarding, heard a shrill voice, "yoohoo....Kathy". I knew immediately that it was S, a woman who's lived in my neighborhood for years. We've never had more than a 5 minute conversation on the street, but when I saw her coming my way, I wanted to bolt. I was about halfway through a good book Tales of a Female Nomad but now would be stuck in conversation with S for the entire 40 minute ride. In addition to being a chatterbox, she is a bit daft in the head. At times I've enjoyed her eccentricity, but in very small doses.

There was really no way to avoid sitting next to her. She started taking her purchases out and was going to explain each one. Suddenly, she let out a little scream.
S--Oh my gosh. What happened to your arm?
K--Remember I told you I was on dialysis? Well, this bump is the matured vein graft.
S--Oh you poor thing. ("You poor thing" is one of my least favorite phrases. I am not a "thing". I am a 59 year old woman who has made a remarkable recovery from a complex medical situaion.) How do you stand it?
K--Stand what?
S--Having people stare at your arm. It makes me creeped out just to look at it. Maybe you should wear long-sleeved t-shirts. I think they were on sale at Macy's.
What on earth would you do if a man asked you out?
K--I don't think that situation is likely to arise. (I didn't tell her about Stanley from the Y who wants to go to the Pub and play darts - he is about 80 and walks with 2 canes. I'd probably have to hold him up by his armpits as he took aim.)

We've had short sleeve weather for about a month, and I haven't noticed anybody staring at it. Last weekend we were at my cousin's daughter's graduation party in south Minn and no one said anything. My relatives are pretty blunt.

So, before I could let her ruin my day any further, I simply got off the train at the next stop. They run every 10 minutes, so the time sacrificed was well spent in getting to the next chapter of the book. Some people can't be reasoned with.

Keep calm and carry on.

Saturday, May 26, 2012

DB Meetup #7

The spontaneous happenings in life are often the best. I decided early afternnon to attend the meetup at the Mall of America. Scott was hosting a visit from Jeff Mather, a delightful New Englander who will be riding the 100 miler next weekend, along with Scott and Heather to raise funds for the ADA Tour de Cure.
We had a great evening, and, as always, it felt sooo good to laugh.

Clockwise, we have Ann, Kim (Mike's wife) Jeff, myself, Erin, Dave (Erin's husband), Scott and Mike. Thanks to Ann's husband Tom for taking the pic.

No, these are not mini pizzas - they are Scott's ketchup!!

Ann and Tom went off to have a cozy dinner to celebrate their 34th wedding anniversary! Way to go, guys! At Ann's side was her adorable standard poodle service dog, Lily. In addition to detecting low blood sugars, Lily can detect highs over 150. She kept putting her chin on my lap. When I tested, I was 202. Yes, she is indeed amazing.

To be sure Jeff got the full MOA experience, we cut through the amusement park on the way to the car.

Looking up at the ferris wheel.

Jeff and Scott both share an affection for Dora. Go figure.

Carousel. I didn't even have to do any special setting on my camera.

Friday, April 13, 2012

The Red Shoes

Back in October of 2010, I was diagnosed with ovarian cancer. Two months later I was stricken with acute kidney failure and on dialysis until January of this year.
Because the dialysis affected every aspect of my daily life, I rarely thought about the cancer. I mean, something's gonna kill me, who cares what?
It looks like my kidneys are stabilizing well and the success may continue. Well, heck - now I'm thinking about the cancer more - when will it come back? Where will it show up? How long will it take to die? It doesn't help that I have insomnia and a lot of empty hours in the night to let these train cars ramble through my head and then back again.
Last week I had a PET scan, which looks throughout the entire body for signs of tumors. My heart was pounding and palms sweaty and of course, it took forever for the oncologist to come into the exam room. I was listening on my Ipod to Geneen Roth, a well known author who writes about eating disorders. She lost a fortune in the Madoff ponzi scheme and now feels there's a relationship between the way we treat food and the way we treat money. Ask me if I care.
Dr. A. comes into the room, smiles, and says "all clear". "Now get out of here and have a good summer."
What did I do next? Why I walked across the street and bought myself a pair of new red shoes. Not 3" stiletto heels, but a more functional kind:

Thursday, March 15, 2012

DB Meetup #6

How do you define a fabulous diabetes meetup?
Feeling sort of blue for several days, and then your mood turning 180 degrees after the first 10 minutes.
And, waking up the next morning with a big smile on your face!

Cynthia and Al

Mikey and Scott enjoying some bolus-worthy carbs

The boys, in attentive picture-posing mode

Scott and me

Wednesday, March 14, 2012

Thursday, March 08, 2012

Me and Mildred at the Y

Well, the novelty of using the treadmill has gradually been wearing off. I've been a little intimidated about trying all the cardio and weight machines. That is, until I saw Mildred on the elliptical. Mildred is an 81 year old, retired art teacher who wears a lavender beret. She lives in a senior highrise downtown but come to my neighborhood (called "uptown") to buy kumquat preserves at a grocery store.
One day she told me she was going to try the elliptical. I didn't think it was a good idea - she walks with a cane and is a tad unsteady. But we got a trainer and she hopped on and took off without a problem. When she was done she had trouble stepping off the platforms stepping off the platforms, so I told her that whenever we were there at the same time I'd be sure to stay so I could help her.
After seeing her success, I decided to try one new machine each week. I really like the leg press:

But it's somewhat awkward getting yourself positioned as your body has to be scrunched up so your feet can press against the resistance board:

I hardly ever have problems going low during a workout because I go right after lunch and right after dinner. Most of the time I don't need any prandial insulin to cover lunch, nor do I have to worry about hypos.
I guess it had to happen sooner or later. I realized I was low and tried to get up to get my sugar out of my fanny pack. I got one leg down, but did not know how to move the other. So I just laid there and stared at the ceiling. I wasn't too concerned but then, upon dropping even further, started my usual dramatic sobbing. Mildred was lifting one pound weights and came over, but I had no words to tell her what was happening. She said maybe she should pull the fire alarm. I had no way of protesting. Fortunately, what she thought was a fire alarm was some other doodad on the wall.
By then I guess my liver had released a bit of sugar into my bloodstream and I was able to reach my pack. However, I still could not get off the machine:

A sullen looking teenager, who probably should have been in school, sauntered up to me and said "hey lady, aren't you almost through?". I said, "would it kill you to give me a second?"
I finally got up, went into the mat room, and laid down on the floor. Mildred came in to say goodbye. I stared up at the ceiling and thought, "just another day in diabetes land".

Monday, February 20, 2012

Some Incredible News

January 12, 2012. One of a few days that changed my life. The phone range at about 9 a.m.

-Kathy? This is Dr. W. (my kidney doctor).
---(Oh sh-t. What’s gone wrong now?)
-I’m calling because your labs have been trending toward normal over the
last few months. I’ve consulted with other members of my department,
and we tentatively feel that you can stop dialysis. We won’t know how it
will go unless we try.
---So, you mean, cut down on the time of each session?
-No, I mean stop going altogether. Don’t go tomorrow. Make an appointment for labs and office visit in a week.
---Well, this is awfully sudden, and I’m beginning to feel really anxious.
-Hey, listen, I’ve never been able to give news like this to someone. I have told the clinic to save your chair in case you need to go back, but I don’t think so. Have a good day.

Say what? My head started to spin. Why, I’d spent so much energy trying to adapt to dialysis and the pain and restrictions, and now, once again, life has given me a whole new set of circumstances to deal with. (Please, guys, I can tell that some of you are thinking “wow, what great news - why can’t she be happy?)

I walked around the rest of the day in a zombie-like state, thinking a) what will I do for insurance if I no longer qualify for SS disability? b) what am I going to do with all the extra time on my hands; c) every time my life calms down, something has to come along and rattle the cage; d) I didn’t get to say goodbye to my friends on the unit - since patient info is confidential, the staff will not tell anyone what happened and most people with think I’m dead;
e)if I can truly accept this gift, then I will constantly be tortured by the chance the the kidneys can again fail - maybe tomorrow, maybe next month, maybe next year. I was so confused I wanted to stand under the freeway overpass and scream. Emotions have run high the past 14 months and I’d crammed a lot of stuff away.

Thankfully, my therapist had an opening the next day, and, after talking with him I felt much calmer.

Went I went in for my doctor’s appointment the next week, things looked good. He said it is not uncommon for people to undergo acute kidney failure after a trauma to the body, such as surgery, accident, or illness. In my case it was the cancer surgery, the cardiac arrest, and the multiple organ shutdown syndrome. However, then the kidneys recover within 7-10 days. This is different than chronic kidney failure, which pwd’s are vulnerable to, and comes on gradually over a period of years.

So, instead of 7-10 weeks, mine came back after 14 months. The head of the nephrology department said he’d only seen a couple of other cases like mine in his 35 years of practice. They don’t know what caused the recovery. And yes, he did use the word “miracle”.

At this point, Dr W said that the main focus for me needs to be “heart health”, which includes the blood vessels. I need to continue to be as active as possible; monitor my bp every day at home (which I’ve been doing for the last 7 years anyway); do not take any new prescription or OTC meds without checking with him (did you know nsaids, such as Advil, can be damaging even to healthy kidneys?); take prescription calcium and Vitamin D supplements; weigh myself everyday to be alert for unusual fluid gains; if, possible, drop some fat - 10 pounds would be great, but even 5 is significant. I also take a diuretic to increase urine output. I can do all of these things. No biggie.

I told a couple of people on the OC early on, but I didn’t want to jinx it by making the news widespread until a month had passed. I had my 4 week appointment today and everything looks great. I told Dr. W. “I think I need to give you a hug.” And he replied, with a big smile on his face, “yes, it’s certainly called for”.

Tonight I’m going to put my “dialysis bag” way in the back of my closet. It contains a blanket, head pillow, arm pillow, eye mask, emergency cabfare, reading material, extra treatments for hypos and my long sparkly black elbow-length glove. People get extremely cold when they dialyze and need to be covered up. But the arm with the access has to be completely exposed so the staff can be sure you don’t fall asleep and roll on it or smush it into the chair. I was thrilled to find the long gloves. They helped a lot.

So now I am left with the unanswerable questions of “why me?” and “why not me?” But I think there is an answer - to embrace the ever present richness of life. And then say “thank you”.