Putting a price on Dads and Diabetes (beware, I ramble)!

My relationship with my Dad is rocky at best. Actually rocky is a really positive take on it. It's a disaster. Now that's a long story and not one that needs to be told, but some parts are relevant to the story I am about to tell. The important background info is as follows: My dad has always been a little off. My parents got divorced when I was six because he was unpredictable and well it was in everyone's best interest that my mom and Joey (my younger bro) and I not live with him. Now Joe and I still saw him on weekends and my Dad did have quite a few lovely attributes. There has never been any doubt in my mind that my father loves me. As I got older my Dad's problems became more and more pronounced and in the last 3 or 4 years he has really gone downhill both physically and mentally. I have no doubt that in addition to the mental illness he has always had, there have been other physiological changes in his brain function. So as it stands now, my father is extremely narssisstic and really has no issue knocking other people down in order to get what he wants. He is VERY sick.

Ok, so I see my dad as infrequently as possible even though he lives only 10 miles away. It's just too painful. But I love him despite the fact that I don't particularly LIKE him and I hate to see him in such pain. The other day I saw him and for the first time in several weeks and we had a somewhat normal father-daughter interaction. We talked about diabetes, and shared our common experiences. The fact that I at 20 years have no complications (although the eye doctor says I have very healthy eyes "for a person with diabetes" so I guess there is something noticeable) and my father was blind, having heart trouble, and many other things by the time he had had diabetes for 20 years came up. I actually felt supported by him.

Well, a day or two later he called and let me know that he had something related to my health that he wanted to talk to me about IN PERSON! Ugh...this is how he sucks people in. I called and told him that I would of course be willing to see him but that I was leaving the next day for a week long vacation and that it would be very hard to relax not knowing what he wanted to speak to me about. He was relentless and would not tell me what it was. He said that if I let it ruin my vacation is was my fault. Soooo...I go off to VT and manage to have a good time. When I get home I go to see my dad. I am dreading it, God only knows what he is going to tell me. Well when I get there the woman he lives with that I guess could be referred to as his "girlfriend" (they met on a phone "chat" line and he got her to move up here from South Carolina with her 16 year old son having never met)is walking out because he has kicked her out for the second time and she is off to live in her car. No worries, she was back the same night. SO we start off buy him telling me all the awful things she did and I tried to strike a balance between being supportive and playing devil's advocate.

Now we get to putting a price on diabetes: When things calmed down he gave me an envelope and in it was a very cute congrats card with a kitty on it. He said it was in honor of 20 years of hard work and whatnot. So I open it and there is $10 dollars in it. Now, I have to say I wasn't expecting anything, but dude, that's $0.50 a year. I mean WOW! I was almost insulted. Of course that made me feel guilty. I mean my dad lives on disability and has a mortgage and just really has no money, so this was nice. I said thanks as enthusiastically as possible and he looked at me. He said "Do you think that is a fair amount for 20 years of diabetes." I had no idea what to say. At this point I could tell that it wasn't the amount he was really going to give me. I figured probably $50 so that's what I said. He responded "Oh, wow, Nic I have a mortgage, I am living on disability..." Picture me looking like I was just stabbed in the gut. But then he said, well yeah, that's how much, and handed the envelope back to me. I opened it and there was a fifty dollar bill in it...along with 19 more of them.

SHIT! Now I am crying hysterically and feel happy, surprised, and a bit guilty. I thanked him and told him I couldn't take it. I know it's bad form to do so, but he can't afford it and in all honesty, at the risk of sounding like a complete douche bag, you don't get anything from my Dad without him already having an idea of what he wants in return. How the hell would I be able to pay this one back? Well, I realized that thinking this way made me sad and unable to be truly appreciative and didn't give my Dad any credit. I mean, he may be doing this while being in touch with that part of him that loves me and wants me to feel special regardless of whether or not it will get him anything. So I gave him the benefit of the doubt and felt honored.

Well, it has been a week since he gave me the gift. His lady friend is back in the house, they even drove to Maine for a few days. I have paid my mom back for the new bike she got me a few weeks ago, and there is still plenty of money for me to use when I go to the Cape and for books next semester. Dad has asked for a few favors and I know he is expecting me to visit him more, but I have decided to let myself believe that it is the shrinking yet still present healthy part of him that wants to see me and spend time with me and not the sick part that wants to hurt me, or blame me for his pain.

Is diabetes worth 50 bucks a year? I don't know. My guess is that if I remembered not having diabetes, I'd say hell no, I wouldn't live with it for 50 bucks a year. But I don't know anything else, and hell, I'm doing alright, and diabetes is part of what's made me, well, me. And I like me now, so sure I'll take 50 bucks! But if anyone reading this is thinking of giving more..I'd take more too!

p.s. Please know that I love my Dad, but sometimes, even love can't heal everything. So yes I am angry with my Dad, but I see the good in him, even at his worst, and I do appreciate those parts.

Introducing Ginger

Well I will admit that deciding on a name for my pump was difficult, there were 4 very good suggestions. I decided to go with Kassie's suggestion which was Ginger. It was the reasoning behind Kassie's name that sealed the deal. For those of you who don't know, my camp name was Fred (courtesy of Kassie) and the idea of me (Fred) and Ginger (pump) doing our diabetes dance seems very appropriate. Plus, who wouldn't want to be part of the Fred and Ginger pair, they were quite the dancers!!!! So welcome Ginger!!!

Pump in need of a name

Now I name almost everything I own that is of value to me. I never named my current pump however, nothing has struck me as the perfect name. Seeing the blogs of so many pumpers with names for their pumps I have decided that I must follow suit and find a name for my blue Deltec Cozmo. I am looking for suggestions. So, if you have a name that you think is particularly great for a lovely blue pump, then let me know. I will post a pic of my pump later in the day.

Diabetes pet peeves installment 2

6)When people assume that Steel Magnolias is the fate of all women with diabetes both before becoming pregnant and after. The other day I was talking to someone about having children and they started to reference the movie and I wanted to flip out on them, but politely explained that most women with diabetes do not go on dialysis at least not in their early 20s and do not die after having children. I'm not sure they believed me. Arghhhh...Like I don't know about the disease I've had for 20 years. Come on people, give me a little credit here.

Disclaimer: I actually really like Steel Magnolias, it's just the right combination of damn funny and sad, but as far as a representation of PWDs, not a fan.

On being chubby

Ugh...So as a young woman and a pwd I am very aware of my weight. I come from a family of uhhhh, shall we say, solid women. None of the women on either side of my family are what you would call thin and even when we are at our healthiest we have athletic builds. In other words we will nevber be size 3's most of us never size 5's. That's fine. We are who we are. But sometimes it isn't as ok with me as it is at others. I mean I need to work very hard to not be overweight. I have to eat very well AND excerise. I understand that much of the population is in the same boat and most of them probably don't complain, but sometimes it just drives me crazy. I mean I have to test all the time, take my insulin, count my carbs, etc..to stay healthy and I can never take a break from that and be safe and healthy. On top of that, if I want to look ok, feel ok, and not gain 5 to 10 lbs I have to eat well and excercise nearly every day. What frustrates me is that I seem to have a very large number of friends who don't exercise and eat like crap and still remain thin. I mean actually thin with decent abs and all that stuff. I mean I love my body 75% of the time. It has done pretty well by me, but sometimes, I wwould like to be able to take a week or two off from exercising 5 times a week and not gain weight. I guess part of me needs to let go of wanting to look like other people. I am who I am and I always will be so that's that. But sometimes that same willful 6 year old that doesn't want to test or take care of her diabetes doesn't feel like exercising all the time and wants to look good and feel good physically in the weight department without making an effort. Or at least be able to take a break from some aspect of my physical identity.

And call me crazy, but I think when I start a new exercise regime I actually gain weight until I figure out my insulin and eating. I mean I go between being really high and then low and being low means eating more and then when I go high from being to skimpy on the insulin or to hewavy on the food I have to take more insulin which doesn't help with weight loss. And of course some exercise hits me right away like running, but others, like biking hit me anywhere from 2 to 4 hours later, so I have to figure out when to decrease my basal, when to eat more, etc... Oh I know I am a whiner, but sometimes, I wish I could take a break from thinking about my body. Sometimes, I want to just be. That's all, just go about my day and think about what I am doing at the moment and not worry about basals, boluses, miles run, hours biked etc.. It's hard to truly be in the moment when you have diabetes and health is your number one priority.

So, my closing thoughts:
1)Being healthy all the time is stressful and tiring even though necessary.
2)One area of control I can take is not always associating weight with attractiveness. I want to exercise and be a healthy weight so that I can live a long, productive life with as little illness as possible not to look hot (although it is a nice added bonus)
3)The body I have is the one I have for the rest of my life and I guess I just have to honor it and try to focus on the wonderful things I have accomplished with it.
NOTE: I guess these things are just easier said than done.

Ugh..Nicole's biggest diabetes pet peeves!

Note: I recognize that I am guilty of doing many things that are probably someone else's pet peeves. That fact does not escape me so please don't take offense.
And now, in no particular order:

1)When people say diabetIs. It's an E guys, not an I. Even worse variation of this: endos who say diabetis (I know a few, but in their defense, they are wonderful docs).

2)When people find out that I have diabetes and then ask me if I should be eating the cupcake/cake/ice cream/etc.. that I am trying to enjoy!! (Yes I should, and anyways, it's none of your damn business!)

3)When people ask me if I can eat salt. Where the hell did that come from in the first place, I mean I get the sugar thing to some extent, but salt???

4)When after finding out that I have diabetes people say, "So, did you used to be really fat/lazy/eat a lot of fat and sugar?" I mean people, where the hell do you get your social skills. First of all, type 1 diabetes is not associated with being overweight/sedentary/etc... Second of all, who asks that shit? I mean grrrr...whatever, not worth getting upset right now!

5)When people start assuming that everytime I am feeling anything other than super happy that I must be low. Oh my gosh, is it against the law to be sad/angry/cranky without it being caused by my diabetes? I apprectiate the concern and the attention to my health, but just a reminder, people with diabetes have (non-hypo induced) fellings too!!!

Ahhh..feels good to let that out! I know that people who do these things are probably just trying to show concern, interest, etc...or to pronounce something, but I just can't help feeling irked by this stuff.

Keeping the momentum going...

It's nearly bed time and I am laying in my bed with my trusty iBook (gosh I love laptops) and I just realized that I need to take my medication and test my blood sugar before I can go to sleep. The thing is, I don't feel like getting up and testing and finding a drink and blah, blah, blah. Now, I know that I have to test, I mean of all of the times of day to let it slip, bedtime is probably one of, if not THE, worst time to do so, but I am tired, and in my bed, and could totally roll over and fall asleep. This struggle-the struggle between doing what is best for me, and doing what the willful/tired/busy/whatever part of me wants to do-is daily. I have been struggling to do an adequate amount of tests each day. My meter keeps a 14 day average and 14 days ago, I had a total of 20 tests in 14 days. Not good. Not only was the number of blood sugars not so stellar, but the average bs wasn't so great either. I don't like the way I feel emotionally or physically when I am not taking care of my diabetes, but sometimes I let "life" get in the way. I put testing off for 5 minutes, then I forget and an hour goes by, then 3 hours, and on some days it ends up being all day. I will admit that in the last few months there have been several days where I have tested only once and occasionally not at all. This is unhealthy, and not good for my morale either.

Now, I give myself a little credit because in my younger days (like a year ago) I would have avoided Joslin like the plague, not wanting to see or have my CDE or endo see my awful control. But what I decided recently, was that ultimately there was nothing they could/would DO to hurt me. It wasn't like they were going to punish me, or perhaps even worse in my mind, abandon me for struggling. So I have been to Joslin 3 times in the last 6 months and have been honest about my difficulty and the result has been wonderful. The amount of support that I have received has been phenomenal. And none of it has made me feel stupid, or like a failure, or like a helpless kid faced with more than I can handle. In fact, I have felt empowered. With the help of my treatment team I have allowed myself to acknowledge the fact that I have a touch of diabetes burnout perhaps made more intense by the realization of my 20th anniversary. At first I fought this because I, Nicole, do not get burned out!!! After 20 years I should just be used to diabetes and all it entails and be thankful that it isn't something terminal or disfiguring or totally disabling. With a little guidance I realized that this way of thinking only makes my life more painful. I don't need to be perfect, in fact it's impossible and that's ok. So with my new found acceptance of my diabetes related stress/exhaustion I have started doing my best to build a routine which includes healthy diabetes habits. When the alarm on my pump goes off, out comes my meter and within 45 seconds the whole thing will be over and I can get back to what I was doing. No putting things off, no making it out to be a bigger task than it is, just getting it done and over with.

I recently checked my meter (like an hour ago) and in the last 14 days I have done 62 tests which comes out to 4 1/2 tests a day. Some days have had 5 tests, most 4, but none with less than 3. And after sending Kelly, my CDE, my blood sugars, we were able to adjust my insulin so that many of those 62 blood sugars, are just wonderful! What is that Nike slogan "Just Do It"? Well that's my new diabetes slogan. And as I see the number of blood tests I am doing increase, and my average blood sugar decrease, I am enjoying taking care of myself. All I need to do is keep the momentum going and when I start to slow down, to remember how wonderful caring for myself feels.

Clara Barton Camp (best place on earth)

So, the round about way that this blog came into existence involves CBC and a search for alumni campers and staff. I somehow came upon Kassie's blog during my search and was motivated to start my own blog.

Now, a slight side note, it was a delight to find Kassie's blog because she was one of the best parts of my Barton expereince which spanned 11 years starting in 1989. Kassie was the best camp director (although they were all wonderful) and made camp a home from day 1. In one of Kassie's posts, you'll notice that she mentions learning every camper's name. Whe she got to the Pixie's table (which was the youngest kids at that time, I was 6) I was too shy to tell her my real name, so she named me Fred. It stuck. To this day many camp people remember me as Fred, some don't know my real name. I then started to call Kassie by her middle name, Agnes, and the rest is history. That was a really long side note, but I like to sing the praises of wonderful people!

Any way...I would love to talk to people from CBC, current or alumni alike. I would really like to talk to anyone who went to camp with me or during the late 90's who remembers the Pixie's, Squirrels Nest, Shangrila, etc... I have really had a strong urge to reconnect with camp after 6 years away. Please drop me note if you think we knew each other or want to swap camp stories, songs, etc...

It's the most wonderful place in the world.

The I AM meme...I just steal things from other people when I am not feeling creative.

1. I am a young woman (although old enough that people have started calling me miss and ma'am)
2. I have type 1 diabetes (20 years as of 07/07/06)
3. I am verrrrrry short (5'1")
4. I am a college senior
5. I am very loving
6. I am really great with children
7. I am sometimes cranky
8. I am painfully perfectionistic
9. I am a singer
10. I am energetic
11. I am addicted to my iPod (well music in general)
12. I am a proud pumper
13. I am a daughter
14. I am a big sister
15. I am a best friend
16. I am patient
17. I am honest
18. I am strong physically and emotionally
19. I am accepting
20. I am an activist
21. I am passionate
22. I am a lover of debate and intense conversation
23. I am intolerant of hatred or abuse
24. I am motivated
25. I am a lover of learning (I heart school)
26. I am a committed, loving, honest friend
27. I am learning from my past, living in and loving the present, and looking forward to the future
28. I am an animal lover
29. I am a HUGE fan of RENT (the musical)
30. I am learning to embrace my strengths and my weaknesses

Happy 20th Birthday Nicole's Diabetes!!!!

Yesterday was the 20th anniversary of my diagnosis and it was a bittersweet day. I woke up a little sad and finished the day happy and proud about 20 healthy and relatively happy years. In honor of this milestone I have committed myself to getting a little healthier. Biking, eating healthier, oh and testing more than once or twice a day. Let's hope that I can keep it up!!! Thanks to my friends and family who have helped me to make the best out of a sometimes sticky challenge.

ARGHHHH.....

I wanted to start linking people's blogs on my blog, but no matter what I do it won't work. Now, granted, I have no idea what I am doing so I am following the directions on the help page, but to no avail. Does anyone know how I do this?? Oh, and feel free to link me on your pages.

Oh, and thanks for the welcoming comments!

Things only a PWD would find exciting/interesting

Today I was waiting for the train and somehow became acutely aware of what a great job I had done with my current pump infusion site. I had been painless wshen inserting it, I couldn't feel anything when I bolused, and the tape was perfectly smooth, not a wrinkle or loose edge. I was getting really excited about this when I realized that most people would not only find the state of my infusion set less than interesting, but they may even thisnk I was a bit odd for feeling any sort of joy over it. So I started a mental list of other things that only a PWD would find noteworthy. Here it is:

1.Numbers (I find myself relating bus numbers, prices, addresses, etc.. to blood sugars, A1c's, etc.. I get ereally excited if I see a number corresponding to a recent test result)
2.Other people with pumps (I get really excited when i see people with pumps. I have been known to walk up to them with a big grin and say, "I have a pump too" or "Don't you just love the pump?")
3.Medic Alert bracelets (I love to look online for cool ones, particularly at ones aimed towards kids becuase they are so much better than any of the ones I had when I was younger)

I am sure more will come to me later.
Oh, and as I was telling my mother about this earlier, the woman ringing us up at the store we were in turned and I noticed that she had a pump. Needless to say, a very energetic conversation took place.