Thigh High and a Low Blow

So I moved my pump site to my thigh last night...and it's an interesting adjustment.  I think I like it actually.  I haven't noticed it at all and my numbers are really no different than normal, so I think it's a good break for my pin cushion of a belly and a great spot for me to be able to keep the belly free for scanning next week!
I had a doctor's appointment today with my endocrinologist.  It went really well.  She's also a type 1 and has so much insight and understanding.  My a1c was 6.4, which means a 3 month average of 127.  It's not perfect, but it's a good big picture.  I told her how worried I'd been about the highs I've had and she assured me that they might spike up, but it's the sustaining highs that are dangerous to me and the baby, and I'm not experiencing that.  She said at this point the baby is developed and now it's just about monitoring growth.  I am at a higher risk of things being wrong, but there is risk for people who are completely normal and  healthy too, we just hope everything is okay.  I'll take that and hope that if there is something I won't beat myself up too much...I'm not making any promises though! 
I mentioned to her my recent obsession with reading blogs of other type 1's and how much information I've found...both good and bad.  I told her that I might have been stupid before...or naive...but I never realized how common it is for a type 1 to have a child that is also a type 1.  There is a study at a local pediatric endocrinologist where they test for the antibody that is found in kids before they develop it.  They do this study with siblings and children of type 1 diabetics.  I opted out when my kids were little because I didn't want to live in fear of something that we know could happen anyway, but I never realized how high the risk really is.  So, my docs little boy...type 1.  She told me about their experience and I think I've changed my mind.  They now offer a trial where if you test positive for the antibodies, they can give you this insulin pill (think of it as an allergy shot) to try to get your body to stop developing those antibodies and hopefully in turn prevent the disease.  Her son did this and then ended up with the disease, but they found it before he ever had a sign or symptom.  I think that time is precious and I guess I'd rather actively try to prevent it, or even catch it early rather than waiting until it's life threatening and doing damage which is what many of us experience.  I'm going to call the office tomorrow and get my kids into the study.  They may be completely fine and never had a single antibody, but I think I'd rather be aware and prepared than just waiting for them to start losing weight, drinking tons of water and wetting the bed to find out.  I also told my sister about it, who is probably now freaking out at her statistic...it's not a great one either!  However, I think knowledge is power and if we can be prepared and proactive, we can do anything!  
Here are some statistics I found online.  I'm amazed...and glad I'm not the father of my kids right now because that ups their risks even more (sorry guys).

• If an immediate relative (parent, brother, sister, son or daughter) has type 1 diabetes, one's risk of developing type 1 diabetes is 10 to 20 times the risk of the general population; your risk can go from 1 in 100 to roughly 1 in 10 or possibly higher, depending on which family member has the diabetes and when they developed it. 
• If one child in a family has type 1 diabetes, their siblings have about a 1 in 10 risk of developing it by age 50. 
• The risk for a child of a parent with type 1 diabetes is lower if it is the mother — rather than the father — who has diabetes. "If the father has it, the risk is about 1 in 10 (10 percent) that his child will develop type 1 diabetes — the same as the risk to a sibling of an affected child," Dr. Warram says. On the other hand, if the mother has type 1 diabetes and is age 25 or younger when the child is born, the risk is reduced to 1 in 25 (4 percent) and if the mother is over age 25, the risk drops to 1 in 100 — virtually the same as the average American. 
• If one of the parents developed type 1 diabetes before age 11, their child's risk of developing type 1 diabetes is somewhat higher than these figures and lower if the parent was diagnosed after their 11th birthday. 
• About 1 in 7 people with type 1 has a condition known as type 2 polyglandular autoimmune syndrome. In addition to type 1 diabetes, these people have thyroid disease, malfunctioning adrenal glands and sometimes other immune disorders. For those with this syndrome, the child's risk of having the syndrome, including type 1 diabetes, is 1 in 2, according to the American Diabetes Association (ADA).

Itchy Belly!!!

My belly itches like crazy today...it's not enough that I always have some itching from the adhesive on my infusion site and then the tape I have to use to keep my CGM in place...now I'm stretching and dry too!  I need lotion and will surely slather it on when I get home, careful not to bother my other devices. 
Speaking of those devices, I have my first "big" level 2 ultrasound on Monday with the high risk OB.  I have to remember to move these things around so that I don't get goop in them either...I'm not sure my sensor would like that, although it might help my numbers out...you never know!  Things to think about!  I found this picture of alternate site locations...

It's funny, I've worn a pump for 13 years and have almost always used my stomach...I guess we get stuck in a rut.  So I'm thinking that this week I will go for an alternate location and see what happens.  Heck, it might even help my numbers do better.  Maybe my arm or thigh would absorb better than my flabby overused belly! 
I'm excited at a thorough peek at the little one, but nervous at what they might find.  The blood sugars have been far from perfect and I know the risks and complications associated with it.  We have also decided that we don't want to find out the sex of the baby, something most people think we're crazy for doing, and that's going to be really hard!  Of course we both want to know, I mean, who doesn't...but I think it would be so much fun to be surprised!  This is going to be a challenge...I'm pretty sure Robby thinks I'll give in and find out, but I'm standing strong!  As long as they don't accidentally show me something, we're good to go!!!!

The more you read, the more you fear!

I've never really feared my children winding up with diabetes...call it stupidity maybe...I don't know.  I know there's a risk, but I guess I didn't realize it was all that common. When Reagan was born they were doing a study at the pediatric endocrinologists office I had gone to as a young adult (from about 15-20) that tested for antibodies that predetermine diabetes.  I opted out of the study.  I was afraid that we would all wait on pins and needles for something that we know is a chance anyway.  I didn't want to wait until the test came back positive and then everyone be freaking out about what might happen.  I also thought we are very well aware of the signs and symptoms of diabetes and if she started showing them we would certainly have her checked out.  I talked this over with my pediatrician and  he was fine with my reasoning and understood. 
So, since my recent obsession with diabetes blogs I've learned just how common it is for someone with Type 1 to have a child with it as well.  I don't know that it's THAT common, but it is something I've seen and read about several times that has opened my eyes to the reality that it can and does happen.  There are several families with a mother or father that has T1 and a child also been diagnosed.  It's an eye opening thought.  It's one thing for me to have diabetes.  It's scary to know that you are at risk from varying blood sugars, or that during pregnancy that high after lunch could be affecting your little one, but it's quite a different thought that they could experience the same crap at such a young age that is my daily life.  I was diagnosed at 15, and frankly feel like I was pretty lucky.  Some of these kids are 8 or 6, or even 3.  I read today about a little girl who was only 9 months old when diagnosed (her dad is also a T1).  I can't even imagine how scary that would be for a parent.  Of course as I read their stories I have tears streaming down my face!
So now being pregnant I'm trying to remind my hormones that this doesn't have to happen to us...but they are telling me otherwise.  Pregnant women should not be allowed to read the internet!!!  I know better!

A positive twist

There is certain about of emotional baggage that comes along with being a Type 1 diabetic.  We all go through denial, anger, depression, and acceptance.  It’s sort of like mourning the death of your pancreas in the beginning, and just like with death eventually you feel a little better…but it never ends.  There are always those days where you feel all of those emotions.  I guess that’s typical of life these days for anyone though, even if they aren’t suffering from a life threatening illness.   I’m probably outing myself here.  I often have people say things to me like they don’t understand how I handle this so well...how I’m always so strong…how I just seem to know what I’m doing.  In reality, I feel like a mess most of the time.  I have my moments where I burst into tears, scream and cry, threaten to throw my pump out the window and just eat a gallon of ice cream…but then I come back to reality and realize that’s not going to help anyone.  I had one of these moments this week.  I literally burst into tears at 4AM after my pump beeped at me for the 5^th time that night.  I told Robby I just wasn’t sure I could do this, I was certain our baby was going to be 12 pounds at birth and I was for sure going to be blind in no time.  Thank God he is so sweet and understanding and let me have my moment and told me everything would be okay….and he’s right.

Today I watched a video about Nick Vijicic, the man who was born with no arms or legs.  If you’ve never seen him, Google it, he’s unbelievable.  Who am I to complain about a malfunctioning pancreas…this man has no arms OR legs!  However, he is positive and happy and loves his life…and so am I!!!  What’s a little faulty pancreas in the grand scheme of things?  I’ve been blessed with an awesome pink pump (pink goes with everything right), a new sensor that can predict when my blood sugar is rising or falling (annoying beeps yes, but worth the life saving side effects), a great team of doctors to help me keep my body and even carry another life inside of mine, and a support system that is unlike any other! 

 Emotional meltdowns happen.  I think they are a normal part of life, but it’s what you do with them that really matter.  I could sit in my room eating ice cream and crying or I can get up and move one step at a time, and that’s what I’m doing!  I’ve adjusted my insulin and I’m watching my carb intake.  This baby and I are going to be just fine! 

My life as a roller coaster

I had an appointment with my OB yesterday and after trying to find the little baby's heartbeat (now the size of an avocado according to my "What to Expect" app) she finally found it up a little higher than the norm.  I told her I felt like things were higher than they should be at my 15 weeks and 3 days mark and she said yeah, she agreed.  She mentioned the baby size and fluid levels and we'd see how they were measuring, etc.  I have a big ultrasound with the perinatologist in 3 weeks...but I already knew what she was saying.  Typically diabetics have bigger babies and we all know this.  It usually starts further along with poor control, elevating blood sugars, etc. but I appear to have taken a potentially early turn.  I have had more trouble controlling things and my doctors worry so much about lows that they tend to let me run a little higher and now I'm afraid I'm seeing the early consequences.  I fought the urge to just up my insulin rates around the board and chase lows all day...I am in fact wearing my sensor which warns me, but I know that's not a good idea, so I didn't.  I worried and fretted for a while last night until coming to the conclusion that I've been doing this so long I've just let go of the need to do it right.  So, I contacted a close friend who just found out she has gestational and asked her for tips she got from her nutritionalist.  I know that eating at designated times and the same kinds or amounts of foods will help both me and baby and make it easier to adjust things in the long run.  Why do we fight this so much?  My need to feel "normal" has always made it so hard for me to follow the rules when it comes to eating.  I want to be able to wake up and skip breakfast or eat a bowl of cereal or bacon and eggs and only have to adjust my insulin according to the number of carbs I eat as any "normal" person's pancreas would do.  Is that too much to ask...apparently for now it is.  So, today I gave in to the fact that I am not normal and I must follow the rules for myself and little baby avocado to be healthy.  I got up and ate a healthy breakfast consisting of about 30 carbs, and spiked up to 226, then ate a sensible lunch consisting of soup, carrots, and string cheese and spiked up to 212, then about 2 hours after lunch I was at 60.  Seriously...seriously???????  What do I have to do?  So, I ate a healthy snack and am maintaining now at 96...we'll see what happens next.  But for today, my body feels like this...

  

Milestones of a different kind

We all get excited about milestones...first words, first steps, first loose tooth...but in our house there are all kinds of different milestones to be thankful for.  About 2 weeks ago I was reading Reagan a story before bed.  We were laying there and I kept yawning thinking I was so tired I'd like to pass out...and I guess I did just that...only in the diabetic sense where my eyes are still open and I'm just not there.  Raising kids in a family with a diabetic, there are a lot of talks about the what ifs.  What to do if Mommy isn't talking, what to do if Mommy is acting funny, looks funny, etc.  There's a fine line between scaring them and making them aware that there is a problem and to take notice.  So, when they are finally aware it's a really big deal.  So, on this night, Reagan went and got her Daddy and told him Mommy isn't talking and looks funny.  He got me some juice and came right in.  We were so proud of her and praised her for noticing because in our little world this is a huge milestone!  She's finally old enough to be aware when something is wrong and even get help if she needs to.  I hate to put that pressure on my kids, but it's also a harsh reality of our lives. 

On another note, she also changed her earrings for the first time without tears, screaming, shaking or having to be sedated this week, and that my friends is a miracle in itself!!!

A Bad Day

Being a pregnant type 1 diabetic days can be rough...heck, just being a diabetic can be rough!  This morning I woke up okay, got in the shower and then heard my sensor beaping that my blood sugar is climbing "predicted high" it says.  I want to scream and throw that thing sometimes.  I know I'm high and I don't need you reminding me...I already feel like crap!  However, it is a great tool to help me monitor and keep things in control, so I wear it as much as I can.  Hormones are high and tears are flowing frequently lately.  So today I sat down and started reading some blogs of other type 1 diabetics...and more tears flowed.  Some are parents of small children, some are adults who were diagnosed when they were young, some are newbies to this debunked pancreas disease, but all of them are beautiful, motivating and inspiring people.  I can't believe I didn't find these resources sooner.  I don't have diabetic friends.  I have recently met one person, who happens to be my pump educator, because our kids played t-ball together.  But even we haven't had a chance to really hang out away from doctor's appointments and t-ball games.  I didn't know how alone I felt about it all until recently.  I mean I always get excited when I see a fellow pumper in public.  It's like we belong to a secret society and you have to give each other the pump wave or something.  I have family and friends who I can talk to, and they know some of the quirky things I say or what I'm talking about when I refer to the "bandaid smell" (insulin smells like bandaids...only way to describe it), but they don't really know what I'm going through on a dialy basis.  They don't know what a low feels like, or a drop from a 350 to 50 blood sugar.  They know I get grouchy, but they don't know the feelings inside that make me want to curl up in a hole and stay until I'm "normal" (what does that really mean?).   
I'm a complete perfectionsit by nature, so I always think if things aren't perfect that I'm doing something wrong (like my morning highs)...but I've learned that all type 1's experience this.  We all have a daily battle where things just aren't perfect and for the most part that's okay (even though your fellow nurse will ask you if something is wrong because you are low when you just ate an hour ago...no, it just sometimes happens to me...).  I feel at ease knowing that I am not alone and there are many people out there feeling what I'm feeling today.  So today my bad day is as perfect as it can be and that's okay.