Monday, December 2, 2013

Off the Wagon

Lately I've been less then perfect in my effort to stay gluten, dairy, caffeine and as always, sugar free. For Thanksgiving dinner, I made pumpkin pie to bring over to my husband's aunt's house. While I was there I was careful only to have a few bites of mashed potatoes, and stuck mostly to the turkey and green beans, but I couldn't help resist just trying my gluten and sugar filled pie...I had to see if it was any good! And it was. It was totally worth it for that one tiny sliver. I managed to stay away from the wine (which always makes my sugars either skyrocket or plummet hours later), but settled down to a delicious cup of coffee with milk after dinner while talking to a second cousin. But I don't drink caffeine or dairy, right? Well, like I said, I have been less then perfect lately.

Of course, everyone has trouble during the holidays, even if they aren't diabetic. But my efforts have been sliding for weeks now. About a month ago, I read more on dairy and fertility and the only thing I could find was that drinking low-fat dairy was supposed to give you trouble getting pregnant and that it's best to drink full fat milk. Since we have a 2 year old, we only drink full fat milk and I always eat full fat yogurt or cottage cheese anyway. So why had I been dairy-free? I realized that cutting dairy and gluten seemed like too much. I gave it a good try, but I didn't have any real reason to cut it except that the holistic nutritionist said it might help regulate my hormones. However cutting out all of that fat and vitamin D could lead to other problems, and on my new diet I was losing weight fast. The last thing I need is to get too skinny which could actually affect my fertility. So I've been back to eating dairy for the past month or so, and I'm very happy about it.

The gluten thing...well, that's a little more serious. I know that I was having joint pain that definitely went away when I quit. I also know that by cutting out gluten products I have much better blood sugar control. But lately, I notice that I sneak in a bite or two of crackers during Little Man's snack, and just today I ate about half a muffin when my sugars were low. I could try to blame low blood sugars for making me have bad choices, but really I just wanted a damn muffin! When you don't have some crazy food allergy that will make you sick immediately, it's hard to resist foods that you cut out. So I continue to struggle with being "on and off" of gluten. I think I really want to stay off of it, if only because I was gluten free when I was pregnant with Little Man, and that was my only successful pregnancy. Even though the doctors and nutritionists say there is probably no connection to eating gluten and my miscarriage and stillbirth, I still am paranoid and feel like "Why not?". Why not do everything I possibly can to avoid the pain of another loss. But it's a struggle, for sure.

My last vice to "quit' is coffee. I quit for a while but the last month or so I've just been drinking it again. I love it. I just feel like I'm seriously addicted. Maybe it's the caffeine or many something else in coffee that makes me want it so much because I still want decaf even if I am good and don't drink regular. Either way, I think it's time to quit for good. Regular, decaf, the works. It was hard over the long weekend because my husband was home and drinking coffee every morning. It's almost impossible for me to smell it and not want some! But I'm going to really, really try to finally quit coffee, even decaf. Everything I've read about people with multiple pregnancy losses says that you should really quit coffee and alcohol months before trying again. I know that regular, healthy pregnancies can handle a cup or two a day, but I already know I've got so many issues that I don't have that luxury. Anyway, it can't hurt to quit something I'm so clearly addicted to. Plus, caffeine totally makes my sugars soar, and I'm always chasing them throughout the morning with each cup I drink. So quitting coffee should be good overall. I just hope I can resist!

I feel like I'm always writing about some extreme diet change or another. But really, I just want to have a healthy, pre-pregnancy diabetic diet. For me that just involves no processed sugar or carbs, no gluten, and no coffee. I think I'll have a glass of wine now and then before I get pregnant, because when I do get pregnant again, I know I'll have to really cut out everything. Why not enjoy my life a little until then? When I'm done having babies, then I can go back to coffee, dairy, and maybe even gluten if I feel ok. But for now, I'll try to get back on the wagon of better health, but this time give myself a break now and then if I do fall off. Because really, no one can be so strict forever!

Wednesday, November 20, 2013

Thoughts on Blogging

Last week was World Diabetes Day. Diabetes blogs and websites were buzzing with stories and discussion surrounding diabetes awareness, and recognizing those who put so much effort into handling this disease every day. As a blogger who writes about diabetes, I felt guilty that I not even know this day existed until I read other blog posts that day. Although I loved learning and reading about World Diabetes Day, and what the other diabetes bloggers had to say (they are such a great resource!), I realized that I'm not on top of all things concerning diabetes. It brings me to what this post is really about, which is about joining the diabetes online community, and blogging in general.

When I was first diagnosed with diabetes, so much change was going on in my life that I didn't really have time to consider myself as different, or as part of a new group of people. I spent 28 years knowing only one friend in grade school with type 1 diabetes, and only hearing about type 2 in the news. I had no frame of reference, no friends with this disease, really no one besides my doctors who even understood it. But after a few years, I started to feel very isolated and lonely, as if no one really understood how hard it was on day to day basis to live with this disease. I somehow made it through my first pregnancy with only the help of a single book on diabetes and pregnancy, and no other people that knew what I was going through. When  I started planning a second pregnancy, I decided to finally search the Internet for diabetes blogs and websites. I knew this time I needed more support. Even though I had already read every book, article and website on how to control the technical aspects of type 1, I had never actually looked into how people lived with this disease year after year. I think part of me was avoiding this "community" because I still saw myself as someone who didn't have diabetes. Someone who was healthy and normal and didn't have to constantly check blood sugars, count carbs and who spent endless hours and dollars on doctors visits. But finally, reality set in and I had had enough of dealing with this alone. Whether I liked it or not, I was in this for the long haul. I wanted help and support and a way to communicate how I felt going through another difficult type 1 pregnancy.

I started off by Googling "best diabetes blogs," found a few I liked, and started to follow them. That's about as far as I got. Then, I decided to just start my own blog. I didn't advertise it, I didn't make it fancy or special, and I didn't even use my full name. I didn't set out to become part of this community, or make some big statement, I really just wanted to talk about the way things are for me, in my daily life as a mom and a type 1.  I didn't even know who really I was talking to, if anyone. The funny thing about blogging is that it can mean such different things to different people. For some, it's this big platform, that almost becomes a profession. For others, it's almost like an online journal, or just for family and friends. Of course, when you write anything, it's nice to have people comment and start a dialogue, but it can also be scary that you are opening yourself up, too.

Although I've been blogging for over a year, I haven't yet decided what it means to me. And I'm o.k. with that. This blog started out to be about living as a mom with type 1 diabetes, and now seems to be about dealing with stillbirth and the aftermath and confusion of that (plus diabetes). I had no idea I would be here a year ago, but here I am. So when the other diabetes bloggers talk about things like World Diabetes Day, I might feel guilty that I'm not some big diabetes blogger that's on top of all things diabetes, who communicates on Twitter, and puts up posts on Instagram of my sugars and pump mishaps. But I need to realize that I'm not just a diabetic. I'm a person who spent most of her life NOT living with diabetes. I don't know all of the lingo, I'm not yet part of this growing diabetic online community, and I'm not ready to join Twitter. I'm just trying to get through life as me; a mom, a wife, a person who lost her sister to cancer, a mother of a stillborn baby, a sewer, a knitter, a lover of books, among many other things. While I think it's fantastic that other people have blogs only about one topic(diabetes, motherhood, fashion, design, etc), I'm not yet ready to fully commit to one label. For the time being, I'll peek into this online community as a quiet observer, watching and learning until I know more, and feel comfortable enough to make myself available to a larger audience. Maybe some day, I'll fancy up this blog, add widgets so people can follow me other places (and join the rest of the world on other social media sites that I currently avoid), and go from there. Or not. Maybe I'll get tired of blogging some day and quit altogether because there is so much to do day to day, especially while managing type 1 diabetes.

For those readers (mostly family and friends) who actually follow this blog, I really appreciate you for letting me be just a little ol' blog hidden away among the bigger, more popular diabetes blogs out there, and more importantly, for following me on this crazy emotional journey that I've suddenly found myself on. This blog is about much, much more then diabetes. It's about keeping me going through the hard times and right now it's part of my emotional survival. So thank you, readers. Even if I don't get many comments, I still know that there are a few of you out there, and that's enough for me.

Thursday, November 14, 2013

Traveling with Diabetes

A few months after I first got my pump (and only 6 months after being diagnosed), my husband and I took a two week trip to eastern Europe. I remember being so worried about traveling with my new disease. How do I travel with all of my supplies? I barely was comfortable using the pump and was just getting used to how much insulin I was using. How could I ever estimate how much I'd use for two weeks while traveling? But I packed everything I thought I needed for two weeks, plus tons extra. I got a back-up pump from Animus for the trip and brought along copies of my prescriptions for insulin and test strips. I made plastic freezer bags of supplies and put one in my bag and in Z's, just in case one of us lost our luggage. The trip was fantastic and the diabetes management went very smoothly. I didn't drop or break my vials of insulin. I had enough supplies and batteries, and I had plenty of glucose tablets to help me along with my many lows caused by walking and touring cities all day long. It was as if being forced to deal with diabetes while doing serious traveling through many different countries, and on trains and planes took away my fear of traveling on smaller trips. If I could go from Croatia to Poland in two weeks with diabetes, I could certainly take weekend trips back home!

Since then, I feel like it's been easy enough (though still annoying) to travel with diabetes, as long as I bring an absurd amount of supplies. Although even with perfect planning, there is always something that can go wrong. You never know when you might mess up while injecting a new pump site, or rip out your tubing on a door handle. Plus, batteries seem to always need to be replaced when I'm away from home. 

This week, I'm visiting my parents in central PA. I packed with care, making sure to bring batteries, glucose tablets, tons of pump supplies and even food, since they don't eat a particularly diabetes friendly diet. But the second day I was here, my pump was beeping for more insulin and when I looked in my bag, I realized that I forgot to take it out of the fridge! Of course, the most important thing I need was sitting at home while I was at a loss for how to compensate for the coffee I had already started to drink. Luckily, it was a Monday and a quick call to my doctor's office was all I needed to get the prescription transferred to the CVS in town. And thankfully, CVS opens early, so I was able to get the insulin nice and early so I could actually eat something before noon. Unfortunately, my mistake cost me the heavfty co-pay of $40 just for one vial instead of my usual $80 for a 90 day supply. I'm annoyed that my forgetfulness cost me money, but when you have a disease where you can't even drink coffee without insulin, you really have no choice. It really could have been a lot, lot worse.

Even though I've gotten used to all of the planning, I still make mistakes from time to time. Heck, I still forget things on a day to day basis just when I leave the house during my daily life! Overall, like anything with type 1 diabetes, planning is everything. I guess I can deal with that. I love to travel, and I'm glad diabetes hasn't really gotten in the way so far. At this point, traveling with a toddler seems to be much more work!



Thursday, November 7, 2013

Letting the Tears Fall

As I said in my last post, I've been really emotional lately. I guess after 6 months, I'm allowing myself to really think about what happened, instead of living in survival just get through it mode. I think about Stone and the pregnancy every day, but lately I've been really letting it sink in. I think about the fact that all I have of him are the pictures of me pregnant, my ultrasound images, and my pregnancy journal. I have a little memory box with his footprints, his hospital bracelet, and a few photos that are both painful and joyful to look at.  I find myself wanting to talk about him more and more. To share my photos with friends, to remember the pregnancy and even the traumatizing ordeal of his birth. I never, ever will forget him, but I find myself wanting to keep him in my life like any other child. I have my "S" necklace which Little Man looks at and says, "baby Stone necklace." I never want to hide what happened, even from my two year old. He needs to know now and forever that he had a brother, a special part of his family who is loved dearly.

I am so lucky to have had a lot of support during my loss and friends who still remember Stone as much as I do. I can't even explain how meaningful it is when a friend sends me a link on stillbirth, or brings up my lost baby as if he is still part of my family.  It's so helpful to know that other people remember him too. He deserves to be remembered. He deserves to be loved by not only his family, but by the friends he would have known. My good friend Carrie sent me this video recently, and it really helps to explain how it feels to have gone through a stillbirth. I relate to every aspect of this video, from how you feel such shock, such pain and how you feel like a bad luck charm around other pregnant women. Talking about my loss, blogging about it and remembering the pregnancy are ways to honor my child. And as painful as it is, thinking about him and letting my tears fall freely are all ways that show how much I love him, and how much I always will.


Tuesday, November 5, 2013

Inconclusive

I'm starting to get really burnt out from testing and trying to find out "what's wrong" with me. I went for testing last week, and finally got some results, however somewhat inconclusive. Thankfully FSH (follicle stimulating hormone) tests were normal and I am not going through early menopause at age 32 (yay!).  I got a 3D ultrasound to rule out adhesions on my uterus that could be causing my short 2-3 day periods. The scan was normal, but my obgyn said that a 3D ultrasound might not show everything and that getting another, more invasive test would be better for looking for adhesions. She then ordered me an estradriol test to take next cycle day 3.  But even with all of that my obgyn also said that I could go ahead and try to get pregnant if I was ready, because "as long as I'm getting a period" I should be fine.  So where does that leave me? Normal results that might not mean normal unless we rule it out with some other crazy test? Or will the hormone estradriol test shed some light on my "problem" of two day periods? Maybe it's not a problem at all. Maybe I just need more time. My doctor seems to think it's fine since she's ok with me getting pregnant again. She's not the one who's been through a stillbirth though. I personally don't think that it's fine until my periods are at least long enough for my brain to imagine an implantation with an adequate uterine lining that can support a healthy pregnancy.

I guess it doesn't matter right now because I'm not at all ready to get pregnant again. I've been crying myself to sleep at night a lot lately. I keep getting visions of my sister dying in the hospital and of delivering a still baby. These are not signs of being ready for another pregnancy, which will most likely drain me of all remaining emotional and physical strength. Even though I've got a lot of emotional healing to do, mostly I am just desperate to know for sure that I'm ok to get pregnant if I wanted to. I guess there won't be some magical doctor out there that will tell me everything will be ok, you are perfectly fine and healthy, and you'll never have another pregnancy loss again. Heck, even if I had normal periods and was "ready", it doesn't guarantee me another healthy pregnancy (although I wish with all of my might that some genie would appear and grant me my wishes of health and babies).

Would I be better able to grieve and move forward with my life if I wasn't in this testing limbo and had normal periods? On top of my possible reproductive problems, my diabetes has been difficult to control lately with this cold that never ends, so I'm constantly reminded of my imperfect health anyway by pumps and alarms beeping at me to warn me that my sugars are spiraling out of control. Plus, I've been charting my basal body temperatures, and they are all super high, even before ovulation, which is unusual and confusing. Everything seems to be pointing to me just being sick and exhausted from it all. My body knows it, my heart knows it and maybe I should just put an end to all of the tests after this next hormone test and give myself a break for a while. Well, I guess the type of break a type 1 diabetic can have, which to be honest, still involves constant thinking about health and testing. So really, no break at all. Although, strangely enough, after everything I've been through, the diabetes part is something that keeps me focused and distracted. Weird how you can find the positive part of something so terrible. I can't wait until that's true for other things in my life.



Saturday, October 26, 2013

New Pump Sites

As every insulin dependent diabetic knows, you have to rotate your sites for insulin injection or pumping often to prevent scar tissue from forming. Since I was diagnosed and started injecting insulin in February 2010 ( and then pumping three months later), I have only been comfortable using my hip/love handle areas.  I love that area because there is plenty of fatty tissue and I can barely feel the pump site when it's in. It's also great because I usually wear my pump on my waistband and the tubing doesn't have to travel far. However I think after two years it's time to give my hips a break and find other sites to add to the rotation.

Most diabetics who pump probably think it's no big deal to use other sites, especially the ever popular (and good absorption site) belly. But it totally creeps me out to put the infusion set there! I feel like I always hit a nerve or something that makes it just feel like a painful pinch every time I move. Plus it always gets ripped out somehow when I pick up Little Man, who's not so little anymore! While I have plenty of fat in my belly, especially after two pregnancies, it's not as much as my full, wonderfully fatty hips. But I must continue with new sites, or I'll have scar tissue and problems later. The belly isn't so bad once I find places that aren't as sensitive. I reluctantly do it for a few days and then am happy to take it out and find somewhere new.


Sensitive belly site..I sort of hate it!

Which is...my thighs! Also a super creepy zone. I don't know why, really. I never minded this area when using syringes to inject insulin, but it just makes me so uneasy to inject an infusion set there! I feel like the top of my thigh just seems too close to muscle (I'm fully aware this is all in my head), which gives it that pinchy, painful feeling. Plus, sometimes I feel like I hit a nerve, and when I flex my muscle it just kills! It's not supposed to feel like that, right? Is it just me? Do I just prefer fattier areas? Of course I have more fat in the inner thigh, but that wouldn't really work with well, walking and such.

Anyway, when I first tried the pump with the upper, top thigh area, I almost always ripped the site out when pulling jeans and pants down to change or go to the bathroom. Not fun. Also a big waste of infusion sets. However, I've been motivated to keep trying, so I switched last week to my left thigh, now my right thigh, and I even tried my belly again. For the sake of preventing scar tissue and future absorption problems, I'll keep trying out my belly and thighs, despite the creepy factor I feel when I do. It's getting to be more normal, and the more I wear my pump infusion site there, the less it gets ripped out. I guess it's a matter of just feeling more comfortable. I'll also have to get used to what areas on my belly and thighs are the most sensitive and should just be avoided all together.

Maybe the next spot to try is the upper arm. I can't even thing about it without cringing, but hopefully I'll get up the nerve to at least try it someday!



Upper thigh (must secure to prevent pants from ripping it out!)

Luckily, this site works even with skinny jeans..the stretchy ones, of course. 

Tuesday, October 15, 2013

There's a Day for Everything

                                         


As a good friend told me in an email today, there's a day for everything. Apparently, it's Pregnancy and Infant Loss Remembrance Day. I didn't know this until two thoughtful friends sent me links to stories or blog posts about this day. One was a story that was eerily similar to my own. While I haven't yet written about the details of that painful night, it was very similar to this story. My stillbirth happened over Memorial Day weekend, and her baby was 32 weeks while mine was 30. The panic that she felt and the hysterical screaming felt so similar to my own. A positive part of her story is that the author had another baby a few years later. Maybe that's what it takes to be able to write it all out. Most of the stories I've read about stillbirth were written years later. While I am able to blog about how I feel during the aftermath of it all, I'm not yet ready to relive that horrible night all over again.

The other link sent to me by a friend had a lighter and more humorous edge to it, yet like my friend said, it made me cry too. While this blog post lists awful things people say to the writer regarding her loss, I am lucky enough to have not yet experienced most of them. Most of the people that know about my loss have only said supportive, comforting things. Of course, I did get the "You will have another baby someday", which I agree with the blogger does not help your grief or loss at all, especially in the beginning. Although I do hope to have another baby someday, when people said that right in the beginning , it didn't really help how I feel about the one I lost.  Most of what I read about other people who have lost babies say that mothers don't feel any more resolved in four years after the death then they do after one year. Basically, when you lose a child you will never forget him or her, and you will never feel like you've completely moved on, regardless of how many children you eventually have.

Since my loss was so recent, a day of remembrance feels just like any other. I still think about my missing baby constantly. I finally bought a necklace with a little letter "S", which I feel around my neck throughout the day. I love this physical reminder and tribute to my son, and I will gladly answer anyone who asks about it (though not promising that I won't break down in tears). It's little things like this, and looking at the picture on my dresser before bed of my husband and I holding him that oddly make me smile, as sad as it is. Right now, I don't think a moment goes by that I don't miss my baby, but in the future I know that October 15 will be a special day to me, my loved ones, and my friends who have been through a pregnancy loss.

I didn't plan on writing about this, but now that I know this remembrance day exists, I know I'm a part of a group of people who are thinking of their lost babies today. It's a very sad group to be a part of, and if I could take all of the pain away from all of those parents, I would. I know that nothing ever completely takes it away, now or ever. My sister once told me that I'll never stop feeling this pain, but eventually I'll learn to live beside it. That's one of the nicest, most supportive things that I was told, and I'll always appreciate her for saying it.

"I have learned that life is a miracle, there are no guarantees, but there are plenty of gifts and I attempt to enjoy them each day to the fullest." -Sherokee Ilse

*another article about how this day came into being: http://parenting.blogs.nytimes.com/2013/10/14/on-national-pregnancy-and-infant-loss-remembrance-day-a-mother-with-a-candle-to-light/?_r=0