Monday, August 30, 2010

Mommy Blues

When I was a little girl, and people would ask me what I was going to be when I grow up, my answer was always the same.

“I’m going to be a mommy – just like my mommy!”

That was it. Plain and simple. What I wanted to be when I grew up was a mommy. I wanted to have a nice house… and a husband… and one boy, and one girl… and to be a great mommy.

I grew up with my mom at home with me. I think she would have preferred to work, to be honest. She has extremely poor eyesight, and has for most of her life. For my entire lifetime she has been unable to drive and because of her poor vision she was not able to continue working efficiently in the medical profession as she had been trained. So by the time I came along, she was already a homemaker full time. My dad made decent money – we were not rich by any means – but he made enough for us to be comfortable. Later, in my early teen years when my dad got sick and eventually passed away from complications of Type 1 Diabetes, things were very hard. Financially we were in ruins and I know it was hard for Mom not being able to work to help our situation out. But, with love, luck and A LOT of prayer, we made it through.

College didn’t seem to be an option for me… I was working from the time I was 16, to help support our household, and I did feel a certain obligation to help support my mom even after I was out of high school and working full time. She and I had talked about college… I was interested in becoming a veterinarian, but it was apparent to me that her fear of being left on her own was pretty big. So I passed on college. To be honest, in the back of my mind the entire way through that arduous decision-making process I knew that what I really wanted was to eventually marry and be a homemaker – so college didn’t seem all that important. The religion that I was raised in was actually anti-college (I will have to do a whole other post one of these days about what it was like to grow up as a Jehovah’s Witness) and so it was easy to justify just working full time and staying with my mom. How silly you can be in your late teens, early 20’s….and its really amazing how the decisions you make even then can affect your entire life there-after.

There came a point where I had to get away. And I did… I left my small-town hometown and moved to “the big city.” I got a job in a call-center and enjoyed my new found freedom. I even went a little wild! But I never lost sight of my future dreams of being a wife to someone someday – being a homemaker – and being a mommy.

It wasn’t long before I met and married Sugar Daddy. Now, before I go on – I want to be VERY clear. He is the love of my life. I couldn’t have found a better man – he is a great husband, and an extremely devoted father. I wouldn’t change my decision to share my life with him for ANYTHING.

But he is also a church musician (he has a fancier title than that, but even after you say Assistant Director of Music and Liturgy, it still really means ‘church musician’)… and I knew when I married him that the possibility of my being a stay-at-home mom when we had our children was VERY slim. I continued to work after we were married… and while I still had dreams of being a full-time homemaker and mommy, it was easy to let those dreams drift a bit.

When we had the twins I knew that it was not possible for me to stay home with them. And I was surprisingly okay with that. If I had had a choice I would have stayed home with them – but I knew that wasn’t a realistic option. So, I went back to work. It was hard leaving my babies… but being able to leave them with Grandma D was a HUGE blessing. I know I would not have been able to bear leaving them in daycare. So my mind was at ease that they were with someone that was whole-heartedly devoted to them during the day. I still had moments where I struggled with it… I missed some of those really important firsts… and I felt that I was unable to express some of MY wants and concerns for my babies because I was not the one that was with them all day long. My mother in law and I definitely butted heads over a few of those issues – but all in all, the situation worked.

When the twins were 27 months old Sugar Boy was diagnosed with Type 1 Diabetes. I almost quit my job. I WOULD HAVE quite my job if it weren’t for the fact that the twins were on my insurance. And that I knew we needed that insurance more than ever now that we were to be dealing with this horrible chronic disease. Sugar Daddy has insurance through his work, but it would have cost a fortune to put the twins and I on his insurance. We had just bought a house 6 months before, and we had that to consider as well. Even though as a mother my need to stay home with my kids was stronger than it ever had been before, the possibility of that happening was now the least possible that it had ever been before. A cruel twist of fate – on so many levels.

So, Grandma D learned how to take care of Sugar Boy. And I learned how to re-do my make up in the car after crying myself to work on pretty much a daily basis. It KILLED me that I was not the one that was home taking care of my precious boy. I was not the one that was checking his sugar and looking out for highs and lows.

Unfortunately I still have not gotten over those feelings – it’s been almost two years since diagnosis, but instead of getting easier, it has gotten harder. I think it’s worse now that the Sugar Kids are in school. My work is a half an hour from the school – and will be even a bit further than that after we move offices in October. That is TOO FAR. If I were home I would be 5 minutes away. School has brought to the surface some Mommy wants and needs that weren’t there before, that have nothing to do with Diabetes, as well. I want to be the one dropping them off. I want to be the one picking them up. I want to be the first one to be able to ask them how their day was… It should be ME, their MOM doing those things. But instead I am here… at a job that does nothing for me other than provide a paycheck that covers the mortgage payment and insurance that covers the $20,000.00 in medical expenses that Diabetes racks up every year. I have hit my pay-earning ceiling because I never went to college… which I blame NO ONE for… but I sure wish I could have looked forward 10 years and seen that happening. All in all – getting up every morning and heading to work is the hardest thing I do in my day.

I have to find a way to be okay with this… I HAVE TO. But I just don’t know how…

Friday, August 27, 2010

Adventures In Radiology

So, having needles poked into my neck is certainly not my idea of a good time. In fact, just the thought of needles being poked into my neck had me pretty nervous to be perfectly honest. But that’s life and when I found out that I was going to need a fine needle biopsy done on my thyroid, I had accepted that I was indeed going to have to deal with needles in my neck. The good thing was that this particular biopsy was extremely non-invasive and that the worst of it was the shot that they give you (another needle!!) to administer the local anesthetic.

So, yesterday morning bright and early, Sugar Daddy and I headed to the hospital where I was to be admitted as an outpatient to have this pesky little procedure done. We had to be there an hour and a half prior to the actual procedure time so that they could do some blood work. The woman that drew my blood for the labs was a real sweetheart. I explained that my arms were a really hard stick and she would be better to go in through the back of my hand. She was a little surprised how calmly I went through a blood draw… indeed, I was really quite the cool customer. I don’t mind watching the needle be inserted or watching the blood come out – and when she asked me to help her by grabbing the full tube and switching it out for the empty since her hands were tied up with the needle, I didn’t flinch. Finally I explained to her that my son is a type 1 diabetic and that the sight of needles going in and blood coming out were no longer disturbing to me… since I have to do this to Sugar Boy all the time.

We went back out to wait and it wasn’t much longer before they called me back for the biopsy. I was thrown off a little when they told Sugar Daddy that he couldn’t come back with us. There was not a lot of room where the biopsy was to be done and the radiologist preferred that family members not be present. I had brought him with as sort of my security blanket, and when I asked later if they could make an exception I was very kindly but firmly told “no”.

Once we were in the room the nurse started up the ultrasound machine and took a look at my thyroid. She seemed puzzled and finally said she needed to go and talk to the Dr. and that she would be right back. When she came back she told me that the images they were seeing on their ultrasound machine were much different than the ones that they received from the imaging place where I had the original ultrasound done. She said that a lot of it was the difference in the machines – the hospital machines were much higher-powered so they were able to see MORE than the original scan did. She said as a result the Dr. would need to take a look and that they would go from there.

My first impression of the radiologist when he came in was, “HOT DAMN!”. He was GOOD looking. (Hey, come on people - I'm married - NOT dead!)  But right away his quirky sense of humor far overshadowed his good looks. After taking a look himself with the ultrasound machine he told me that he was actually seeming MULTIPLE nodules on my thyroid and that they were gathered on what he believed to possibly be a goiter.


So, now what? He explained that the orders from my primary care physician were for a Thyroid Fine Needle Aspiration Biopsy on a single nodule, but that he felt I needed a bit more than that. He asked for my consent, which I gave and on we went. The shot administering the local I barely felt – the problem… It did almost NOTHING. I VERY MUCH felt the first fine needle biopsy that they did. He assured me that I was not supposed to have felt anything so they would give me another shot. He did so and started on the next biopsy. “I can still feel that!” was my response. He gave me another shot. Finally – the third fine needle biopsy was done and I didn’t feel anything but some pressure. At that point I said, “Ya know – the same thing happens when I go to the dentist… they have a heck of time getting me numb.” His response: “Uhhhhh – you could have mentioned that!” LOL Oops – I really didn’t think it would be the same!

Next he needed to do two core samples. This means that instead of a fine needle being inserted they were going to be using a much thicker instrument that he would insert into my neck and then snip off a small chunk of tissue to be tested. Oh joy. He comes back and he says, “Now, Donna, there is going to be a clicking noise when I take the sample. It sounds like this…” LOUD click sound (something like the click that the sen-serter makes when I am changing out Sugar Boys CGM sensor), and then he says, “whatever you do – DON’T jump when you hear that, K?”

“OK – got it… no jumping.”

He inserts this thing, and the next thing I know, he is THUNKING it to get it to where he wants it to be. Now of course – this whole thing has been ultrasound guided… and I am laying on the bed FACING the screen so I can SEE this thing in my neck and I can see him literally hammering it in. At this point I shut my eyes. CLICK – first sample taken. He inserts the next one – more thunking – and this is when he says to the nurse, “Ya know – I think the needles are a little dull on these things!” I had to suppress a giggle (after all I’m not supposed to move)… OMG did he REALLY just say that??? The nurse DID giggle. Good times.

When he got done he told me that the results could come back as inconclusive, in which case they would have to take a closer look via surgery – or possibly just remove the nodules and / or possible goiter all together. He let me know that I would be pretty sore the rest of the day (UNDERSTATEMENT!!) and that I would possibly have a bruise on my neck (Uh… yeah… from all the THUNKING no doubt) and that I should wear the band-aid he was putting on the rest of the day so that “I don’t ooze all over the place.”

And that was that.

We went home. Once the local started to wear off I was indeed VERY sore… and found holding my head up to be especially challenging. So I spent A LOT of time in bed.

Today I am still sore, but nothing like yesterday. I should have results back early next week. So, now we wait & see

Tuesday, August 24, 2010

Celebrate the BIG Victories!!!

I was going to name this post "Celebrate the Small Victories!".  But in truth - that was not at all appropriate... because the victory I am celebrating tonight is HUGE!!

So... the last several days have been... well... a roller coaster.  We have been Up, Down & All Around.

  • I discovered a lump on my neck.
  • Sugar Boys pump goofed out on us... and was not recording actions that it had performed.
  • Sugar Daddy's car had its bumper kissed by a big ole truck at the gas station.
  • The brakes went out on my van.
  • I found out that said lump was not a problem... but that the nodule they found while investigating the lump needs to be biopsied.
  • We were notified yesterday that Sugar Boy's school nurse had a mandatory meeting at the district offices today and so would not be at the school during the hours that Sugar Boy would be there.
Which brings me to today's BIG victory!  After talking to Mrs A, Sugar Boy's teacher, we decided to let the teacher and the aid deal with Sugar Boys care for today.  I was VERY nervous about this.  The bulk of our training had been done with Nurse L and while Mrs A had sat in on the initial meeting she had not been apart of the changes that we had made since Sugar Boy had started school.  Sugar Daddy and I typed up a one page instruction sheet for her.  You can see it HERE... please feel free to use and modify it for your own use if you have the need for it!  She assured us that all was well and she could handle it.

Normally the kids are dropped off and picked up on Tuesdays by Grandma D, however since I had to go and run some errands for the biopsy that is coming up on Thursday, I decided to pick them up myself today... that way I could talk to Mrs A about how the day had gone as well.

When the Sugar Kids came out of their classroom they were all smiles.  I basked for a few seconds in just how much they really do love school.  Mrs A was not far behind them.  She walked right up to me and smiled... then she blew me away!  Off the top of her head she said, "I checked him at 2pm and he was 199.  I left him alone since that was in the OK range you specified.  We didn't play today so we had our snack right after.  We had a birthday party today and he had an ice cream sandwich that had 24 carbs in it.  He ate it all so I dosed him for the 24 carbs and the pump delivered 4 units.  That was at 2:30, so his 2 hour check is right now."  She said this while handing me his sugar box so I could do said check.  How cool is THAT???

A very BIG victory today, my friends!

Monday, August 23, 2010

Overwhelmed & Conflicted

Last Friday I had a bit of an epiphany. Hmmm? Is that really the right word? Maybe not… for now let’s say I had a revelation of sorts.

I finally admitted something to myself. It was hard, but once I did – I felt instantly better. So I know it was right.

I am completely overwhelmed right now.

See – just typing that out… makes me feel a little better. There is A LOT going on right now. August, September and October are BIG family months in our family. We have several birthdays, the Sugar Kids starting school in August has been stressful to say the least, this September there is a wedding out of town we will be traveling to, amongst other things. Also in October this year, my work is re-locating to a new office. If any of you have ever been part of an office relocation – it’s NOT a small matter. I know I will be putting in a lot of overtime and it will be a HUGE undertaking for the entire company.

The other thing that happens in October: Our local JDRF walk.

Enter the “Conflicted” part of this post. I want to participate. I want to gather family and friends and have our team be a presence there. But I really just don’t know if I have the capacity to take it on right now. I should have done a walk video weeks, if not months, ago. But I didn’t. I should be fund-raising NOW. But I am not. I can’t. I just can’t do those things right now.

And I feel horrible for it. I want a cure – or even just improvement in the quality of Sugar Boys life as much as any D Mom or Dad wants for their son/daughter. I do – OF COURSE I do. But there comes a point where I have to say, I have reached my limit. Sugar Daddy and I have talked about alternate forms of fund raising… indeed fund raising that can be done ANY time of year – not just at walk time. So that may be an alternative for us.

In the meantime – I have to figure out how to corral the guilt of not participating in this year’s walk. I hope I can.

Friday, August 20, 2010

Up, Down, All Around

Up, Down, All Around….

It sounds like a game my preschooler’s have been playing in the classroom, right? Nope. Those have been my emotions the past few days.

We have had some on-going training happening with Nurse L. She is totally willing to learn how is best to care for Sugar Boy. When I talk to her, she tells me, “Yep, no problem! I’ve got it!” and she has never once made me feel like I am “bothering her”. All that being said, each day when Sugar Boy comes home and I go through the logs and info downloaded out of the pump I find some small mistake. Nothing major… but still – Sugar Boy’s care needs to be precise. Even small mistakes can be HUGE if the domino affect gets triggered.

So, I call her – and we discuss – and she ends the conversation with, “Yep, no problem! I’ve got it!”

Now, don’t get me wrong – I expected there to be wrinkles that needed ironing out. And I didn’t expect the wrinkles to be ironed out on Day 1. But I have to confess that I really DID expect for most of them to be gone by day 5. So, that’s why last night (after having an already fairly emotional day for other reasons, which I will address later in this post) I was seething.

Every day Sugar Boy has a standing BG check at 2pm. This is approximately 2 hours after his lunch bolus that he got before arriving at school, and its right before a half an hour of play time, so it’s really the perfect time for his first check. At this point she is to check him, and correct or boost as necessary based on the knowledge that he is about to play. After play he goes back again for another check and then he has a snack. After snack he comes back again for a bolus based on the number of carbs he ate for his snack. Easy peasy right??

When Grandma picked the kids up from school yesterday, Linkie was reporting 261. A little high, but not alarmingly so. Here is the kicker…. When we pulled the data from the pump via CareLink, THERE WAS NO BOLUS FOR A SNACK!!! So I asked Sugar Boy what they had had for a snack that day. He answers “Pretzels”. I’m thinking…. “how can there be NO bolus for PRETZELS???” I went to the actual pump and checked the bolus history from the day – Yep NO BOLUS since lunch. This is where the seething part happened. All of the thoughts of “WHY can’s she GET THIS RIGHT???” started going through my head. I went to bed very frustrated… and literally, morning could not come fast enough so that I could call Nurse L and find out what the heck happened. Also, I might note… I was a little worried about the afternoon basal level as well… because if he ate pretzels and received no bolus for them, he should have been WAY higher than 261!

So this morning, first thing, I was on the phone to Nurse L. I asked her to give me a run-down of her log from the day before (we had not requested a daily log from her since we could get all the information we needed – indeed EVERY button push made on that pump can be downloaded via CareLink). She ran down her log with me. Boy was I in for a surprise! Her log stated that she tested his BG at 2pm and he was 263. She issued a correction via the pump and it gave him 1.7u (keep in mind we are on a u25 strength insulin, so it’s not as much as that looks like it is!). THEN at 3pm she had him back where she bolused him for 12 carbs worth of pretzels and the pump delivered 1.5u.


So, there you go – the problem (for yesterday, anyway) was NOT with Nurse L. It was with the pump.  For some reason, the pump did not record the correction or the bolus in its history. (This also explains why his BG was only at 261 an hour and a half after eating PRETZELS! Grant it – that is still higher than I would prefer, but NOT as high as it should have been if no bolus was issued.) Next step: Call Medtronic to find out why that would have happened… and what we can do to make sure it doesn’t happen again! In the meantime Nurse L and I decided that it would be prudent for her to email me her logs each day. =)

The other reason my emotions were so jumbled yesterday is I started off the day at the doctor. Now let me be clear –I AM NOT A GOOD PATIENT. I am much more comfortable with the roll of caregiver! On Wednesday I found a lump on my neck. So yesterday morning I was at the Dr, and by the afternoon I found myself at an imaging place having an ultrasound done on my neck. I am sure this is thyroid related – and I am sure it will all work out to be nothing major. But it’s just that little extra bit of added stress that I SO don’t need right now.

Oh GREAT – and just now as I am finishing up this post, Sugar Daddy just called to say that some guy BACKED INTO HIS CAR at the gas station. Front bumper and passenger side headlight is damaged.





Tuesday, August 17, 2010

A Dream For A Cure

It suddenly occurred to me that our JDRF walk is just over two months away!


Where has the time gone? In the spirit of “The Walk For A Cure” I am re-posting one of my favorite posts from the old blog. And TONIGHT when I get home… I am going to get working on our walk video!
I have a dream.

My dream consists of not having to prick my sons tiny fingers 8-10 times a day in order to test the glucose levels in his blood.

My dream consists of being able to feed my son a meal without first having to weigh and measure the food I am giving him.

My dream consists of being able to give that food to him without having to think about what it will do to his blood glucose levels once it enters his body, and the best way to manage that particular food based on the amount of carbohydrates, protein or fat it contains.

My dream consists of being able to give my son a bath without worrying that the water is too warm and what that warm water will do to his blood glucose levels.

My dream consists of being able to put my son to bed at night without worry of his blood glucose levels going too high during the night – or worse going too low.

My dream consists of not having to get up during the night to check my sons blood glucose levels so that we know he is safe… and so that we can correct those levels when he is not in a safe range.

My dream consists of not having to have my son lie down on the floor every other night so that I can outfit him with an infusion set for his insulin pump which delivers multiple doses of life support to him around the clock.

My dream consists of being able to send my son to school without need of a plan that both his teachers and the school nurse must be made aware of and must follow to the letter in order to keep him alive while he is there.

My dream consists of being able to send my son out to play without worry of the activities he engages in bringing his blood glucose dangerously low.

My dream consists of not having to worry about him ANYTIME he is out of my sight.

My dream consists of my son not having to explain to others when he is older why he sometimes gets lightheaded, cranky, and has blurred vision.

My dream consists of my son one day being able to have a sleepover at a friend’s house without also having me or his dad there.

My dream consists of my son one day being able to drive without having to worry about becoming hypoglycemic behind the wheel and potentially injuring himself and/or others.

My dream consists of my son, as he ages, not having to worry about this disease damaging his eyes, circulatory system, heart, or kidneys.

My dream consists of my son never having to worry that his son or daughter will have to worry about all of these things when he passes on the susceptibility of this disease to them.

My dream is that one day in the not too distant future my family and I will be able to look back on today and think of it fondly as a period of time we went through – but no longer have to endure.

I am talking about the dream for a Cure.

A Cure for Type 1 Diabetes.

Sunday, August 15, 2010

It's Going To Be Okay!!!

Hi! If you are reading this, you have found your way to my new blog! Welcome!! =)

This past week was BIG for the Sugar Family... and you know what? It’s going to be okay…. It’s going to be OKAY! OH.MY.GOSH! I COULD SING!!! (Even though you really wouldn’t want me to – let’s face it, the singing is better left to Sugar Daddy!) IT’S GOING TO BE OKAY!!!! =)

For months I have been carrying a weight around. I didn’t know just how heavy of a weight it had become until it was lifted. Sugar Boy and Sweet Girl started Kindergarten Prep this week. The Sugar Kids are now officially school-aged. I was so incredibly scared of this new challenge in our family life. I think it’s difficult for ANY parents to send their kids off to school for the first time. But sending them off with Diabetes in tow… that made this process especially difficult.

So much to prepare!!! We had to write a 504 plan (THANK YOU Heidi and Hallie for lending me your documents, so that all I had to do was tweak them, and make them Sugar Boy specific!!), we had to get an extra “sugar box” together that was just for school, we had to meet with the nurse and teacher and train them on how to keep him safe for the 4 hours a day that he is there 4 days a week. We had to fill out forms and have them signed by his endocrinologist saying that he authorized the nurse to dispense Sugar Boy’s insulin and, if ever needed (the thought alone sends chills up my spine!!), the glucagon. All of this in ADDITION to the normal preparations that go with starting school: new clothes for both kids, new shoes, new backpacks, school supplies, and schedule juggling. Thank goodness for my fellow D-Moms supporting me and bolstering my poor haggard emotions when they needed it! (Not to name names or anything… but Wendy, Tracy, Reyna, Hallie, Heidi, and Kristi you are my ANGELS!!) =)

The first time I felt a tiny piece of this incredibly heavy weight come off was when we went to Open House at the school and met Sweet Girls and Sugar Boy’s teacher for the first time. Mrs. A is WONDERFUL! She is an older lady that has been teaching for a very long time. She had a Type 1 Diabetic in her class last year and one a few years before that. She herself is a Type 2 Diabetic (although VERY well controlled!) so therefore she is very familiar with the signs and symptoms of both hyper and hypoglycemia! She assured us immediately that her first concern is to Sugar Boys health and safety… that teaching him comes second to that. As soon as she said those words I felt myself breathe a sigh of relief! She GETS it!!

The next day we had a meeting set up with Mrs. A and Nurse L. This is where we gave them our 504 plan as well as two monkeys named George. Let me explain: Heidi had given me the BRILLIANT idea of creating lanyard tags for the teacher and nurse. Basically, these tags would be a “cheat sheet” for them to follow for Sugar Boys care. I tweaked the idea a bit by adding his picture, and having it be a bit of an introduction card on one side and then having the “cheat sheet” part be on the backside. Instead of having them wear them around their necks, I attached the card to a little stuffed monkey, which the kids predictably named George. I couldn’t be more pleased with how both our 504 plan and the Georges were received by them both. The nurse (who is starting her first year as a school nurse- she has been a hospital nurse for the better part of her career) seemed relieved and grateful to have such detailed instructions. And Mrs. A was simply calm, cool and collected. Sugar Daddy and I walked away from the meeting feeling that the weight had been lifted! It was truly a WONDERFUL feeling!

The next day was the FIRST DAY OF SCHOOL!!! We went through all the normal first day jitters. Sugar Daddy and I dropped them off feeling like we were about to leap a huge chasm, and not completely sure we were ready for it. The Sugar Kids were fine with us leaving them, though, and off we went. For the next four hours I think I checked the clock on my phone AT LEAST 40 times. Sugar Daddy did a good job taking me out to eat and shopping… trying to keep me distracted. =) I knew that Sugar Boy’s first BG check was scheduled to be at 2pm (as it will be every day) and at 2pm I was staring at the phone… part of me wanted it to ring… wanted Nurse L to call me just so I could know what the reading was; part of me dreaded it ringing… because that meant that there was something wrong… that Nurse L had run into a problem she didn’t know how to handle. The phone never rang. We were back at the school by 4:20 to pick them up when class let out at 4:30. The first thing I did was check Linkie (Sugar Boy wears a Continuous Glucose Monitoring System [CGMS] that is integrated with his insulin pump – we have affectionately named it “Linkie”) and it showed he was 235! I was more than happy with that number!

The Sugar Kids were totally wiped out – it had been a big day!!! They fell asleep in the car, and Sugar Boy’s number came down on its own. All was well!!

That night we downloaded all the information from the pump so we could see EXACTLY what had been done though out the day… there we a couple of issues that needed addressing… but nothing major!

In the end… what I can say is: IT’S GOING TO BE OKAY!!!!!!! And let me tell you – saying those words is a relief! But even better than that – being able to say them and BELIEVE what I am saying… that is quite simply MAGICAL!!!