We got the official call that there is no way around their black and white policy. They didn't care about the reasons why this is important now- we simply have to wait 6 months. Which is fine. She's upset but will survive..she's a fighter. It's just hard to manage with how active she is, etc. Now to wait and see about the Dexcom G4. I'm hoping that they approve that. Please..we can stand some good news. So fingers and toes crossed..I'll post an update here as soon as we know.
Wonder what they can deny next? The bright sunny lining on all this? The pump will be free by then. Late december is when the six months of starting shots it. June 26, 2013...so I don't forget. On December 26, 2013 we can put in a request for it again. Here's hoping they don't decline a 2nd time.
By then though - Obamacare kicks in and we might be changing up our policies anyway. She may choose to use Starbucks insurance...it's all a mystery right now....
7.10.2013
Denial is a river in Egypt?
Yes we got the "dreaded" denial call. I don't get this. We have an 8500 deductible. So if you make us wait 6 mos (the reasoning was that she hasn't been on insulin shots long enough- but wouldn't her endo actually be the better one to make that call insurance company?) - we get the pump FREE...all supplies free, etc because by then we will most likely have maxed out our deductible (we already are 3300 into it!). But if we get it now and they approve it....we pay $1666 out of pocket. Well played insurance company- well played......
Is it a tragedy if she doesn't get it? To Katie yes- so for that reason alone I want it. But truly her numbers are all over still....we are worrying about that dreaded under 100 blood sugar. She's now working full time and her numbers are just wildly swinging. Today she was 70 at one point. And she's not really thinking clearly then. She's not wanting to take time to deal with it..because as she says she's FINE...well she's 18 and invincible- but yet she's fragile...super fragile.
Anyway- the next step after denial is a peer-to-peer- her doctor talks to the insurance doctor to explain why they want the pump and so fast. I don't know what the recourse is after if she's still denied. I don't know if because the reasoning is it hasn't been 6 mos that they will just resubmit it again in 6 mos?
And then we found out that the Dexcom Continuous Glucose Monitor (CGM) wasn't approved for sure yet either....we thought that it was since we submitted a payment plan. So now we wait for that also. Fingers crossed this one goes through. With her numbers so all over the place- this device will be crucial in seeing her trends and also for notifying her if she has high or low blood sugar- which means she will sleep better at night.
We are hoping to re-carpet the basement bedroom (where she sleeps- lost carpeting in basement in flood a few months back) to make her room better....but that won't be instantaneously.
I don't get why the insurance company is so obnoxious about things either- why deny us her test strips? I don't get it. Esp when your discount means I pay $100 over $112 or something stupid. Why does every step require four steps back? What do they think we are doing with her test strips? What do they think will be the problem with us getting a pump??
I'll keep you all posted on how things progress after the peer-to-peer. Hoping our Dr. Kassar is as persuasive as he seems!
Is it a tragedy if she doesn't get it? To Katie yes- so for that reason alone I want it. But truly her numbers are all over still....we are worrying about that dreaded under 100 blood sugar. She's now working full time and her numbers are just wildly swinging. Today she was 70 at one point. And she's not really thinking clearly then. She's not wanting to take time to deal with it..because as she says she's FINE...well she's 18 and invincible- but yet she's fragile...super fragile.
Anyway- the next step after denial is a peer-to-peer- her doctor talks to the insurance doctor to explain why they want the pump and so fast. I don't know what the recourse is after if she's still denied. I don't know if because the reasoning is it hasn't been 6 mos that they will just resubmit it again in 6 mos?
And then we found out that the Dexcom Continuous Glucose Monitor (CGM) wasn't approved for sure yet either....we thought that it was since we submitted a payment plan. So now we wait for that also. Fingers crossed this one goes through. With her numbers so all over the place- this device will be crucial in seeing her trends and also for notifying her if she has high or low blood sugar- which means she will sleep better at night.
We are hoping to re-carpet the basement bedroom (where she sleeps- lost carpeting in basement in flood a few months back) to make her room better....but that won't be instantaneously.
I don't get why the insurance company is so obnoxious about things either- why deny us her test strips? I don't get it. Esp when your discount means I pay $100 over $112 or something stupid. Why does every step require four steps back? What do they think we are doing with her test strips? What do they think will be the problem with us getting a pump??
I'll keep you all posted on how things progress after the peer-to-peer. Hoping our Dr. Kassar is as persuasive as he seems!
7.09.2013
Getting organized
All I can say is- use a binder. It helped so much. The Diabetes education netted us the same handouts in some cases at the endo. The JDRF sent us a supply pack- if you are newly diagnosed- go to their site and order one. It's adorable for the kids. A backback with a teddy bear and supplies and coupons!
I sorted the binder by sections- handouts, appts, paperwork from doctor, insulin section and then one for the dietician and then the pump. I just hole punch stuff right into the binder and grab it with us for appts.
I do have a separate one for medical bills and insurance statements to reconcile. And also her prescriptions.
I sorted the binder by sections- handouts, appts, paperwork from doctor, insulin section and then one for the dietician and then the pump. I just hole punch stuff right into the binder and grab it with us for appts.
I do have a separate one for medical bills and insurance statements to reconcile. And also her prescriptions.
7.08.2013
The Real Deal
We were told that she could swing into low blood sugars. They showed me the handout where the guy looks cranky. I was told she could get belligerent. I had no idea what the meant. But we did have the episode and it's important for other parents wondering if it's normal.
First it's laughable that I could convince a fully grown woman-child to eat a snack. HAHAHAHAHA...she's stronger than I am (I have the bruises to prove it) and I had no idea what would set her off. It turns out it was me texting to see where she was after work. For most other 18 year olds..the eye rolling is normal. What is not is a 20 min meltdown of destruction and chair throwing, kicking, punching, etc. Perhaps more frank language would have been helpful from the doctor's office. Or maybe no one wants to talk about it?
I'm not posting this out there for all to embarrass myself or my daughter. But it was scary as crap and I was so glad I was dead honest with my best friend. Who told me it was ok. She didn't judge because frankly- that was not Katie who I was dealing with. I think it was a combination of the stress of the disease combined with low blood sugar that sent her over the edge. She kept screaming she wasn't mad at the disease because that would be STUPID..she thought we were the idiots (juicier words inserted please) and she hated US. Her solution was to stop her insulin and move out. I didn't handle it well. Kev didn't either. We both were upset.
First it's laughable that I could convince a fully grown woman-child to eat a snack. HAHAHAHAHA...she's stronger than I am (I have the bruises to prove it) and I had no idea what would set her off. It turns out it was me texting to see where she was after work. For most other 18 year olds..the eye rolling is normal. What is not is a 20 min meltdown of destruction and chair throwing, kicking, punching, etc. Perhaps more frank language would have been helpful from the doctor's office. Or maybe no one wants to talk about it?
I'm not posting this out there for all to embarrass myself or my daughter. But it was scary as crap and I was so glad I was dead honest with my best friend. Who told me it was ok. She didn't judge because frankly- that was not Katie who I was dealing with. I think it was a combination of the stress of the disease combined with low blood sugar that sent her over the edge. She kept screaming she wasn't mad at the disease because that would be STUPID..she thought we were the idiots (juicier words inserted please) and she hated US. Her solution was to stop her insulin and move out. I didn't handle it well. Kev didn't either. We both were upset.
She finally got herself a snack and was able to think clearly enough to realize that she overreacted. This is the same type of outburst we were dealing with for over a year now..nice to know our sweetheart daughter didn't mean it all those times. And if she really was mad at us...maybe we will just give her a pass :)
The scary part is that for Katie- her low sugar right now is in the 100s. Her body loves being in the 200s. So as she adjusts to having insulin in her body again she will have a lower and lower threshold before she's experiencing hypoglycemia.
We are now waiting for the honeymoon period. Some kids for reasons totally not known- experience a lack of symptoms and their diabetes seems to go away. Some might not even need insulin. It's like their bodies get enough insulin that any islet (eyelet) cells left kick into gear and try and do what they are supposed to. But eventually they die off. The longest period of time this could be is a year or so.
And is it wrong of me to hope this doesn't happen? All the insulin has a shelf life of 30 days. That would be money down the drain if she ends up NOT needing it.
Some kids don't Honeymoon at all. And don't get me wrong..I say kids because I have a kid with it. But you can be diagnosed with T1D as an adult too. Rarer but not impossible!
Type 1 vs. Type 2 Diabetes and Mythbusters
One of the things I've found myself repeating over and over is that Type 1 and Type 2 diabetes are caused due to very different reasons.
Type 1 Diabetes-
IDDM (Insulin-Dependent Diabetes Mellitus) or was known as Childhood or Juvenile diabetes
This is the diabetes you hear ALL the horror stories about- people dying in their sleep...not managing it well. Insulin shots, etc. In the "olden" days (think back to Steel Magnolias) it was not as well controlled as it is today. There have been many strides made to help control this life-threatening disease. The statistic of 1 in 20 kids will die from it before the age of 18, really makes you stop and think!
Type 1 Diabetics (aka Katie's type)- make little or no insulin. Insulin is needed because it's the keys that open the lock that is the on the door to your cells. Once insulin comes along and opens this lock- glucose can be utilized by that cell. Glucose (aka Sugar) is used or burned for energy. When it sits in our blood vessels these nick the vessel walls and can cause damage to organs and other tissues. So what makes insulin? Your pancreas. When the pancreas does NOT work properly- it cannot product insulin- which in turn regulates all the glucose (sugar) in your body. So in Katie's case- her Islet (eyelet) cells cannot make insulin or do and are attack by her own body. Type 1 diabetes is an autoimmune disorder.
Type 2 Diabetes-
NIDDM (Non-Insulin Dependent Mellitus)
Prevents your body from using the insulin. Your body DOES make insulin but usually not enough. Most people with diabetes (about 95%) have type 2! This occurs in usually older, overweight people. 8 out of 10 people with type 2 diabetes are overweight. So that's why this type is considered controllable with pills and diet/exercise.
Katie cannot just change her diet/exercise and magically her pancreas will starting making insulin. Katie also cannot just manage her diabetes by taking a pill. (Yes I have gotten some messages from well meaning family/friends telling me she will be fine if she just changes her diet). It's ok because two weeks earlier I may have been one of those types of people! I had NO idea how serious type 1 Diabetes was - or I had blocked it out of my mind. I've had plenty of experience with Type 2 diabetes. It's on both sides of my family and I've dealt with it with both parents.
Myth 1- Not cured with diet and exercise (for that matter neither is type 2- it can go into remission but usually will return later in life)
Myth 2- Type 2 diabetics can't become type 1. This is simply not true..because a lot of times they WILL eventually need insulin to survive.
Myth 3- Type 1 diabetics can just take a pill. There is no effective way to give insulin in a pill. The acidic nature of the stomach would break down the pill before it could be absorbed across the stomach wall.
Myth 4- Diabetes is not contagious. I feel bad for Katie because some of her friends didn't know how to handle it. I explained that some friends just didn't know what to say to her when faced with their own mortality. There were some people who acted like they could catch it.
Symptoms of diabetes:
-Frequent urination
-Excessive hunger and thirst
-Weight loss
-Changes in behavior
Now all of this can be explained also by exercising, drinking more water, dieting, being 18 and moody, being a senior and so on and so on. We caught it early. We were lucky. We just keep repeating that to ourselves. Over and over.
If you have any questions on Katie or Type 1 diabetes- we are more than willing to talk to others!
Diabetes TrialNet- the importance of checking your other kids!
The test for Katie to see her A1c was over a $1000 USD. So it's beneficial if you have other children to sign them up for the free test from TrialNet!
This is a study being done to see if siblings or other family members carry the autoantibodies for Type 1 Diabetes. A sibling has a 10% increased risk for developing Type 1 Diabetes. I saw a blog where the woman just posted that all three of her kids now have type 1 diabetes. I had them give Mike the fasting glucose test. But this test by TrialNet is one that will re-test him yearly for no charge to see if he develops the autoantibodies. This is going to be important. In return we will answer questions and he may be asked to participate in the study. So if you have a child with Type 1 Diabetes- you or your child (cousin, nephew, grandparents, etc) may be eligible. From their site:
This is a study being done to see if siblings or other family members carry the autoantibodies for Type 1 Diabetes. A sibling has a 10% increased risk for developing Type 1 Diabetes. I saw a blog where the woman just posted that all three of her kids now have type 1 diabetes. I had them give Mike the fasting glucose test. But this test by TrialNet is one that will re-test him yearly for no charge to see if he develops the autoantibodies. This is going to be important. In return we will answer questions and he may be asked to participate in the study. So if you have a child with Type 1 Diabetes- you or your child (cousin, nephew, grandparents, etc) may be eligible. From their site:
Who is eligible?
Anyone between the ages of 1 and 45 years with a sibling, child or parent with type 1 diabetes.
Anyone between the ages of 1 and 20 with a sibling, child, parent, cousin, uncle, aunt, niece, nephew, grandparent or half-sibling with type 1 diabetes.
Hope this helps others who are trying to navigate their way through the quicksand that is Diabetes education!
Insurance
I don't know why I get surprised....I head to the CVS to get her prescription filled for test strips....not drugs we can re-sell on the street people and the insurance DECLINES her for this (out of all the other $$$$ crap we have to do or pay for). Why? Because she just got strips over two weeks ago and she should not be out yet. Ok...right except that amazingly enough- she IS. She's a newly diagnosed diabetic..whose sugars are wildly out of control...she's shaky and trying to do this for herself...
Imagine being an adult and then having to ask your Mommy or Daddy every time you need insulin or a stick for bgm (blood glucose monitoring). Right....sure....
Anyway- she did waste about 20 between not being able to get blood out (Avoid One-Touch Delica....that is by far the worst system we've seen) or because the strip had an error right out of the gate. Do you know that I want to punch a wall when I see my kid shaking and crying because she's wasted another strip that cost us a $1. And now the insurance wants to deny her the damn strips?
Oh and let's not forget- we have a deductible - $8500 that is completely out of pocket at 100% before the insurance kicks in. And her delica strips were a whopping $102 or something crazy for 100 strips..so what the heck are they complaining about???! We basically got little to no discount for these strips and then insurance declines us.
At any rate- we realized we had supplies for another meter someone had given us...(Bayer Contour) and while she loves the fast-clik of the Accu-Chek Nano- she will use that lancing device with the Bayer Contour machine for now. Why not fight it? Because we just found out that when Katie goes on the OmniPod insulin pump those are DIFFERENT test strips.
Seriously people??? Y'all can't get your act together and make sure that the strips and the meter and the pump and the cgm are all the same? Really?
I also got the call for the pump..it will be 1600 to get her started with a 30 day supply. Then a 3 month supply of pods is almost 269 a month. We are for sure going to max out that deductible soon. One can only hope. Because after the deductible is met the damn thing is FREE. Lovely. So we have to pay that and then another 1047 for the CGM and 300 a month in supplies for that. Ugh - sticker shock...everywhere we go.
They do not kid when they say that this is one of the most $$$$ diseases to manage. And yet I can't bear to see my kid stick herself endless times a day.
But hey - thanks to our insurance (which will be un-named but has human in the title!) they added stress to my day. I felt like a junkie arguing for her next fix and begging for more test strips..because obviously my daughter ran out because she's doing them for fun. Drive-up glucose testing for free at Katie's house. Morons.
Imagine being an adult and then having to ask your Mommy or Daddy every time you need insulin or a stick for bgm (blood glucose monitoring). Right....sure....
Anyway- she did waste about 20 between not being able to get blood out (Avoid One-Touch Delica....that is by far the worst system we've seen) or because the strip had an error right out of the gate. Do you know that I want to punch a wall when I see my kid shaking and crying because she's wasted another strip that cost us a $1. And now the insurance wants to deny her the damn strips?
Oh and let's not forget- we have a deductible - $8500 that is completely out of pocket at 100% before the insurance kicks in. And her delica strips were a whopping $102 or something crazy for 100 strips..so what the heck are they complaining about???! We basically got little to no discount for these strips and then insurance declines us.
At any rate- we realized we had supplies for another meter someone had given us...(Bayer Contour) and while she loves the fast-clik of the Accu-Chek Nano- she will use that lancing device with the Bayer Contour machine for now. Why not fight it? Because we just found out that when Katie goes on the OmniPod insulin pump those are DIFFERENT test strips.
Seriously people??? Y'all can't get your act together and make sure that the strips and the meter and the pump and the cgm are all the same? Really?
I also got the call for the pump..it will be 1600 to get her started with a 30 day supply. Then a 3 month supply of pods is almost 269 a month. We are for sure going to max out that deductible soon. One can only hope. Because after the deductible is met the damn thing is FREE. Lovely. So we have to pay that and then another 1047 for the CGM and 300 a month in supplies for that. Ugh - sticker shock...everywhere we go.
They do not kid when they say that this is one of the most $$$$ diseases to manage. And yet I can't bear to see my kid stick herself endless times a day.
But hey - thanks to our insurance (which will be un-named but has human in the title!) they added stress to my day. I felt like a junkie arguing for her next fix and begging for more test strips..because obviously my daughter ran out because she's doing them for fun. Drive-up glucose testing for free at Katie's house. Morons.
7.07.2013
Getting by with a little help from my friends
This is important..you need to let those close to your heart in...in to see the ugliness this disease causes..the sobbing and temper tantrums (yours and your womanchild's) in order to get the best advice. I cannot stress this enough. If it wasn't for my good friend - I would be lost. She took what I saw as a hopeless situation and my back against the wall (and for the record - Katie's too) and made a valid suggestion.
She pointed out that my concern over Katie being in her bedroom in the basement didn't matter truly because if Katie went into hypoglycemia - she could be in MY room and my bed for all that it mattered and I wouldn't be able to save her. Scary as all get out- but yet so true. So dang true.
There will be more from me about this..but thank you love. If it wasn't for saner and calmer heads prevailing- the fighting would STILL be going on. Tonight is the first time in three nights we haven't had a screaming match about her safety and our comfort levels in letting her spread her wings.
The stakes are SO much higher in a seriously ill child. And if you think a) she's not seriously ill or b) she's not a child - then you are so, so mistaken.
I'm going to need my friends in the months to come..because I stupidly thought things would be FINE now that we had a diagnosis but the reality is that we are just starting this climb and a climb it will be at times too. But I will do anything to make sure that Katie is around to scream and cry and be safe as long as possible.
I owe you one Lynda!! Hugs and love xoxo.
She pointed out that my concern over Katie being in her bedroom in the basement didn't matter truly because if Katie went into hypoglycemia - she could be in MY room and my bed for all that it mattered and I wouldn't be able to save her. Scary as all get out- but yet so true. So dang true.
There will be more from me about this..but thank you love. If it wasn't for saner and calmer heads prevailing- the fighting would STILL be going on. Tonight is the first time in three nights we haven't had a screaming match about her safety and our comfort levels in letting her spread her wings.
The stakes are SO much higher in a seriously ill child. And if you think a) she's not seriously ill or b) she's not a child - then you are so, so mistaken.
I'm going to need my friends in the months to come..because I stupidly thought things would be FINE now that we had a diagnosis but the reality is that we are just starting this climb and a climb it will be at times too. But I will do anything to make sure that Katie is around to scream and cry and be safe as long as possible.
I owe you one Lynda!! Hugs and love xoxo.
JDRF Walk for the Cure
In a nutshell...the JDRF asks that your teammates all raise $100 each (it's a suggestion). We are getting a big group together to walk- anyone is welcome to join us and if you can't walk- you can walk virtually. Here is a link to Katie's Team page- Katie's Warriors!
Anyone who signs up to walk with our team - we are asking to please try and raise funds...there are forms you can print out to get donations in person (from workmates, to friends, etc) or you can direct people to our page to donate online!
Katie's goal is to raise $5,000. If we get anyone reading this blog other than family and friends (or myself) I MAY do a giveaway if you post how much you've donated. Just a comment with your name and the amount you donated would be fine. We'd love the support to show Katie we care!
Appointment Number 2
After dealing with Dr. Kassar- we left with instructions to call on stuff and to come back on Friday for the more in depth appointment. We also were told we would be going for diabetes education. (Which our regular doc- Doc Opalka had already referred us out for).
I canNOT stress enough being organized when you go in for your appointments. My first appointment I had put together a symptom timeline for them so they could see how we figured out it was diabetes before the doctors did. I also included weights in that. Then I took copies so they had a set and I had a set. I also put together a list of questions (If anyone wants to know that list- just ask me- I'll email you a copy). My questions though were quickly separated in my mind in the NEED TO KNOW and NEED TO KNOW NOW categories.
Dr. K really appreciated that we were so organized and that I had done all that. In addition to that I had copied the test results that Dr. O gave me and Dr O also accessed the hospital database to get me any sugars or tests Katie had in the past year. They were able to add all of that to the file. When Dr. K came in, I mentioned it was in there but didn't focus on it. While it's interesting reading- we already KNEW she had diabetes...the why or how we got there wasn't important at THAT moment.
So we head to our appointment on friday and in the meantime C called us the next day and someone else checked in the day after. This is truly a hands-on office. On Friday we were told that Katie can really eat whatever she wants in moderation. But in moderation. Seriously- you can't just eat a ton of sugar- you can insulin fix (add in more to cover it) but they aren't sure what it does in the long run and it's just not super healthy. Esp since right now she's running sugars when eating in the 500s.
Friday's appointment focused on carb counting. OMG- talk about a lot of information. And Colleen also went over ALL the sheets again- which I actually appreciated. Carb counting was going ok because Katie had downloaded an app when she first found out she was diabetic before our first Dr. K appointment and went in with it already filled in! She said that since we did that- Katie obviously was ready to talk pumps. That it depended on our insurance but she could be in a CGM (Continuous Glucose Monitor) and an Insulin Pump. They really didn't sway us on any one brand. IP only have seven? brands on the market and only one is tubeless - the OmniPod by Insulet. These are nifty devices- I'll post about them separately later this week. But they are NOT cheap.
In the meantime we were told to make the appointment for education- 10 hours of it. When she called to see how Katie's numbers were - and found out we already had an appointment she was surprised...I'm off school right now other than research and Katie starts junior college locally this fall. (this was her grand plan because she's wanting to be a doctor and knows school is $$$) - we are so happy this was the decision as it gives her time to get acclimated to this illness and ability to manage it before leaving.
I canNOT stress enough being organized when you go in for your appointments. My first appointment I had put together a symptom timeline for them so they could see how we figured out it was diabetes before the doctors did. I also included weights in that. Then I took copies so they had a set and I had a set. I also put together a list of questions (If anyone wants to know that list- just ask me- I'll email you a copy). My questions though were quickly separated in my mind in the NEED TO KNOW and NEED TO KNOW NOW categories.
Dr. K really appreciated that we were so organized and that I had done all that. In addition to that I had copied the test results that Dr. O gave me and Dr O also accessed the hospital database to get me any sugars or tests Katie had in the past year. They were able to add all of that to the file. When Dr. K came in, I mentioned it was in there but didn't focus on it. While it's interesting reading- we already KNEW she had diabetes...the why or how we got there wasn't important at THAT moment.
So we head to our appointment on friday and in the meantime C called us the next day and someone else checked in the day after. This is truly a hands-on office. On Friday we were told that Katie can really eat whatever she wants in moderation. But in moderation. Seriously- you can't just eat a ton of sugar- you can insulin fix (add in more to cover it) but they aren't sure what it does in the long run and it's just not super healthy. Esp since right now she's running sugars when eating in the 500s.
Friday's appointment focused on carb counting. OMG- talk about a lot of information. And Colleen also went over ALL the sheets again- which I actually appreciated. Carb counting was going ok because Katie had downloaded an app when she first found out she was diabetic before our first Dr. K appointment and went in with it already filled in! She said that since we did that- Katie obviously was ready to talk pumps. That it depended on our insurance but she could be in a CGM (Continuous Glucose Monitor) and an Insulin Pump. They really didn't sway us on any one brand. IP only have seven? brands on the market and only one is tubeless - the OmniPod by Insulet. These are nifty devices- I'll post about them separately later this week. But they are NOT cheap.
In the meantime we were told to make the appointment for education- 10 hours of it. When she called to see how Katie's numbers were - and found out we already had an appointment she was surprised...I'm off school right now other than research and Katie starts junior college locally this fall. (this was her grand plan because she's wanting to be a doctor and knows school is $$$) - we are so happy this was the decision as it gives her time to get acclimated to this illness and ability to manage it before leaving.
Meeting Dr. Kassar
We went in early to fill out paperwork. It took 35-40 min to get there but we felt this was our only hope. I was armed with questions up the wazoo. So was Katie. And then we get there and I realize..this is totally different.
She had just turned 18 in May. It means she's legally an adult. So in order for me to be there or do anything with or for her she has to fill out paperwork. It also means when she swings high or low with mood swings or blood sugar- the first thing she always threatens to do is to remove my access. Since we pay for her medical and also all her bills - this is an empty threat but it still terrifies me. There is no way this adult-child is ready to handle this. She's barely able to remember to brush her teeth or let the dog out. Why 18 is considered being an adult is beyond me!
So she signs all the papers..Dr Kassar is a doll..funny and very adamant that if Katie only wants a doctor to review her sugars and sign a prescription pad she needs to not waste his time and leave now. He tells her off the bat that she WILL be healthy and live a long life. She WILL be able to have kids if she talks to him and sets it up with him and so on.
He's SURE it's type 1. NO doubt in his mind- but we will do the autoantibody test to make sure (it was 100% positive for this). He refers us to his nurse practitioner and asks if we can wait 30 min until she's free. Yes of course..you squeeze us in and we will wait however long it takes. He does seem impressed that we cleared our schedule and will make this our priority.
What follows is so much paperwork and information my head hurt. Literally hurt. I went home with a BAG full of sheets and information and I know she only gave me half the information. I sat back and let Katie explain what she knew or didn't know. Asked questions when I had some and just basically let Katie handle it. She was going over insulin shots and Katie was just beside herself sobbing so C (nurse) finally said..ok that's it..we are doing the insulin shot first. Katie thought *I* was going to give her the shot but I had to get tough (otherwise I'd be a blubbering mess!) and told her NO way..she's in college and an adult and while I would be her backup WHENever she needed - she needed to learn to test her blood and give herself insulin. It's literally going to keep her alive.
So C gave her the first unit for her- she was freaked out as it was being prepared and then shot time..and wouldn't you know- Katie said...That's it?! That was not so bad.
I said, without missing a beat- "Well C, we obviously need a bigger needle to match that reaction of sobbing Katie gave us". She looked taken aback- but we always use humor to diffuse situations here. They will get used to us.
We left with that mountain and a good attitude (that day).
She had just turned 18 in May. It means she's legally an adult. So in order for me to be there or do anything with or for her she has to fill out paperwork. It also means when she swings high or low with mood swings or blood sugar- the first thing she always threatens to do is to remove my access. Since we pay for her medical and also all her bills - this is an empty threat but it still terrifies me. There is no way this adult-child is ready to handle this. She's barely able to remember to brush her teeth or let the dog out. Why 18 is considered being an adult is beyond me!
So she signs all the papers..Dr Kassar is a doll..funny and very adamant that if Katie only wants a doctor to review her sugars and sign a prescription pad she needs to not waste his time and leave now. He tells her off the bat that she WILL be healthy and live a long life. She WILL be able to have kids if she talks to him and sets it up with him and so on.
He's SURE it's type 1. NO doubt in his mind- but we will do the autoantibody test to make sure (it was 100% positive for this). He refers us to his nurse practitioner and asks if we can wait 30 min until she's free. Yes of course..you squeeze us in and we will wait however long it takes. He does seem impressed that we cleared our schedule and will make this our priority.
What follows is so much paperwork and information my head hurt. Literally hurt. I went home with a BAG full of sheets and information and I know she only gave me half the information. I sat back and let Katie explain what she knew or didn't know. Asked questions when I had some and just basically let Katie handle it. She was going over insulin shots and Katie was just beside herself sobbing so C (nurse) finally said..ok that's it..we are doing the insulin shot first. Katie thought *I* was going to give her the shot but I had to get tough (otherwise I'd be a blubbering mess!) and told her NO way..she's in college and an adult and while I would be her backup WHENever she needed - she needed to learn to test her blood and give herself insulin. It's literally going to keep her alive.
So C gave her the first unit for her- she was freaked out as it was being prepared and then shot time..and wouldn't you know- Katie said...That's it?! That was not so bad.
I said, without missing a beat- "Well C, we obviously need a bigger needle to match that reaction of sobbing Katie gave us". She looked taken aback- but we always use humor to diffuse situations here. They will get used to us.
We left with that mountain and a good attitude (that day).
The next steps....
Looking at her photo on the last post..man we should have noticed how pale and sick she looked. In this society though, even her old doctor (a pediatrician) said her BMI looked awesome and she looked fine. In reality she was TOO thin..had lost too much weight too quick, etc and so on.
So after the call..we took her in for a blood test that is called an A1c. We were not even worrying about our deductible at this point (that would come in week 2). To explain an A1c- this is a test that looks at a person's red blood cells for the last few months. It basically looks at your glycated hemoglobin (who knew that the Animal Phys class and cell bio would come in so handy for me?) Glycated is a fancy name for coated in sugar and your blood cells have a better memory than most people. So you can get a snapshot of what has been going on in the past. They use this test for Type 1 and Type 2 diabetics. The Mayo Clinic offers a good overview on what this test was all about. Suffice it to say that a normal A1c is usually around 6.5%. Katie's came back at a whopping 12.1%. This is not funny at all...but we both chuckled at our first appointment with the endocrinologist when the nurse was explaining her A1c was so high it was off the chart! (The red area is where she SHOULD be!)
I apologize for the wordiness- eventually we can be shorter in our posts...but it's hard to get it all down. This is ultimately going to be where I direct all family and friends so I can stop repeating myself 20 times a day too!
So after the A1c test our lovely doctor (the new one - who was mine for a few years now) Dr O. told us it was most likely type 1 Diabetes and we needed to see an endocrinologist immediately. She only liked one endo in our whole area (outside Chicago). So we left with a prescription for a glucose monitor and a referral to Dr. K. We still hadn't gotten the A1C test results when we left her office though.
It's a bit like falling down the rabbit hole. Literally. I'm in the middle of doing my thesis research and this diagnosis came on the tail end of a grueling set of days- hours in the field in heat, labwork for 12 hour days and then straight into researching this disease!
So I call Dr. K only to find out the earlier they could see Katie was in AUGUST. Oh heck no. They just tell me her blood sugars fasting are 298- ---- 298 people.....it's supposed to be around 70 for her age and health! Can you imagine the damage that would happen. Dr. O was amazed we had tested for this disease b/c with most people they see them when they are wheeled into the ER in a coma. Yes a coma. So to be able to figure it out and quickly in their eyes was amazing. So I explain to the office I can't wait until August and I would take ANY appt no matter what. She found one for this coming week- July 9th. I went back to Dr O and they came out to talk to me and reassure me. They called with the A1c numbers a few days later and said it was super high and we could NOT wait until 7/9/13 for an appt. So they called for me. This was because the secretary there said sometimes they will squeeze them in if the general doctor calls up and requests.
Thank heavens for Dr. O's office. They rocked with this. So they got us in 6/26. It was hysterical because when we met Dr. K- he kept saying how did we get in. I said..well I called..and he's like NO..how did you get in THIS week....I'm leaving for Vienna on Friday for 10 days. Talk about divine intervention!
So after the call..we took her in for a blood test that is called an A1c. We were not even worrying about our deductible at this point (that would come in week 2). To explain an A1c- this is a test that looks at a person's red blood cells for the last few months. It basically looks at your glycated hemoglobin (who knew that the Animal Phys class and cell bio would come in so handy for me?) Glycated is a fancy name for coated in sugar and your blood cells have a better memory than most people. So you can get a snapshot of what has been going on in the past. They use this test for Type 1 and Type 2 diabetics. The Mayo Clinic offers a good overview on what this test was all about. Suffice it to say that a normal A1c is usually around 6.5%. Katie's came back at a whopping 12.1%. This is not funny at all...but we both chuckled at our first appointment with the endocrinologist when the nurse was explaining her A1c was so high it was off the chart! (The red area is where she SHOULD be!)
I apologize for the wordiness- eventually we can be shorter in our posts...but it's hard to get it all down. This is ultimately going to be where I direct all family and friends so I can stop repeating myself 20 times a day too!
So after the A1c test our lovely doctor (the new one - who was mine for a few years now) Dr O. told us it was most likely type 1 Diabetes and we needed to see an endocrinologist immediately. She only liked one endo in our whole area (outside Chicago). So we left with a prescription for a glucose monitor and a referral to Dr. K. We still hadn't gotten the A1C test results when we left her office though.
It's a bit like falling down the rabbit hole. Literally. I'm in the middle of doing my thesis research and this diagnosis came on the tail end of a grueling set of days- hours in the field in heat, labwork for 12 hour days and then straight into researching this disease!
So I call Dr. K only to find out the earlier they could see Katie was in AUGUST. Oh heck no. They just tell me her blood sugars fasting are 298- ---- 298 people.....it's supposed to be around 70 for her age and health! Can you imagine the damage that would happen. Dr. O was amazed we had tested for this disease b/c with most people they see them when they are wheeled into the ER in a coma. Yes a coma. So to be able to figure it out and quickly in their eyes was amazing. So I explain to the office I can't wait until August and I would take ANY appt no matter what. She found one for this coming week- July 9th. I went back to Dr O and they came out to talk to me and reassure me. They called with the A1c numbers a few days later and said it was super high and we could NOT wait until 7/9/13 for an appt. So they called for me. This was because the secretary there said sometimes they will squeeze them in if the general doctor calls up and requests.
Thank heavens for Dr. O's office. They rocked with this. So they got us in 6/26. It was hysterical because when we met Dr. K- he kept saying how did we get in. I said..well I called..and he's like NO..how did you get in THIS week....I'm leaving for Vienna on Friday for 10 days. Talk about divine intervention!
Uncovering the mystery
Getting the call from the doctor, I can remember answering the phone and just knowing something was wrong. And yet I was *still* shocked to hear the words- 'she has diabetes' coming out of her mouth. I wrote down everything and promised to get her to the office in a few minutes for another blood test. And then I went upstairs to talk to my husband. He knew something was wrong just by looking at my face. I said it as calmly as I could and I remember feeling like I was floating above my body and watching the scene. I ended with "Well type 1 diabetes is the better one, right?" and my husband saying "No it's much worse". I think when I look back..when I first mentioned diabetes to him- he KNEW it was going to be type 1 and was hoping it wasn't.
I was in la-la land because I was worrying more about cancers of the thyroid and things of that nature. When I first heard diabetes I admit I was pretty cavalier about it..like it's not a big deal. But it is. It's scary as heck and explains a lot of things that had been going on with her. From attitude (nasty mood swings) to lack of interest in school (a 5.0 gpa straight A student- not caring about her grades) to general sleepiness and just not feeling good. It's astounding to me that she was still able to exercise. Really????
I was in la-la land because I was worrying more about cancers of the thyroid and things of that nature. When I first heard diabetes I admit I was pretty cavalier about it..like it's not a big deal. But it is. It's scary as heck and explains a lot of things that had been going on with her. From attitude (nasty mood swings) to lack of interest in school (a 5.0 gpa straight A student- not caring about her grades) to general sleepiness and just not feeling good. It's astounding to me that she was still able to exercise. Really????
Little did I know. It's been two weeks since she was diagnosed and life as we know it has changed and will change drastically.
Date of Diagnosis - June 21, 2013
Date of Diagnosis - June 21, 2013
6.17.2013
House
There were times the past year that I literally felt that we were living in a tv show. It was very hard to piece all of the symptoms together to get the Type 1 Diabetes diagnosis. Let me back up a bit.
I'm Fee. I'm in my early 40s and it's my daughter Katie who has type 1 diabetes. I have three kids. Katie, Mike and AnnaGrace. AnnaGrace is our wonder from China and made me laugh when she told us that she was so glad she wasn't related to us (when we were testing Mike for T1 Diabetes). I've been married almost 20 years to the love of my life, Kev. Getting back to Katie...
We were working on exercise for me...you could say she appointed herself my trainer for working out. I highly recommend having your child train you. They are relentless...I suspect as payback for the groundings or chores or something. But she took a certain glee in monitoring my food and exercise. She would hound me into working out. While I'm not thin..she is. Always has been. Keep in mind this child was on the verge of adulthood and we all knew it. I'm 18 was a frequent refrain in our home!
She started having symptoms early in her senior year of high school. She'd text me from school and complain of blurry vision or tingling in her hands/feet. But it wasn't tied to anything in our minds. We noticed she was drinking a lot more water and eating a ton. But with all the working out we were doing- she was always doing up to an hour while I only lasted 20-30 min so eating more seemed reasonable to us.
It wasn't until she started getting yeast infections of all things that I started to piece things together. I'm sorry to admit we thought she might be a hypochondriac- all these odd symptoms... When I look back now it seems SO clear....but man when you are living it daily it is not clear at all. In June I finally looked back at all the infections and realized we had removed what we thought was the problem but she was still having them. I started piecing other things together. Like the fact that she had dropped probably 30 lbs in 3 or 4 months. Maybe more. I know I bought her clothes during summer because she was bigger (which started the health kick). And then after school started I needed to replace size 11/13's with 5's. She was only in those until xmas break and then one day she was walking past me and I said....."Hey didn't we get rid of all those big clothes?" She answered that we had but these were the NEW shorts. Um that's not right.
Once we sat down with Kev- I said we needed to think about what it could be. Katie is a google champ- just like her dad....but had come up with pinworm or cancer. Since none of us were getting infections I doubted it. I thought about it and I remember thinking- use your science degree for this...yeast like what? SUGAR...ok if the yeast are living on sugar - where is it coming from? We have Type 2 diabetes on both sides of my family as well as on Kev's mom's side.
I looked at Kev and said..should we have her tested for diabetes? He thought about it for the longest time and said yes. We had also discussed checking her thyroid since we have issues on both sides. FINALLY it felt like we were getting to the bottom of the mystery. I called our doctor and made an appointment to discuss.
I'm Fee. I'm in my early 40s and it's my daughter Katie who has type 1 diabetes. I have three kids. Katie, Mike and AnnaGrace. AnnaGrace is our wonder from China and made me laugh when she told us that she was so glad she wasn't related to us (when we were testing Mike for T1 Diabetes). I've been married almost 20 years to the love of my life, Kev. Getting back to Katie...
She started having symptoms early in her senior year of high school. She'd text me from school and complain of blurry vision or tingling in her hands/feet. But it wasn't tied to anything in our minds. We noticed she was drinking a lot more water and eating a ton. But with all the working out we were doing- she was always doing up to an hour while I only lasted 20-30 min so eating more seemed reasonable to us.
It wasn't until she started getting yeast infections of all things that I started to piece things together. I'm sorry to admit we thought she might be a hypochondriac- all these odd symptoms... When I look back now it seems SO clear....but man when you are living it daily it is not clear at all. In June I finally looked back at all the infections and realized we had removed what we thought was the problem but she was still having them. I started piecing other things together. Like the fact that she had dropped probably 30 lbs in 3 or 4 months. Maybe more. I know I bought her clothes during summer because she was bigger (which started the health kick). And then after school started I needed to replace size 11/13's with 5's. She was only in those until xmas break and then one day she was walking past me and I said....."Hey didn't we get rid of all those big clothes?" She answered that we had but these were the NEW shorts. Um that's not right.
Once we sat down with Kev- I said we needed to think about what it could be. Katie is a google champ- just like her dad....but had come up with pinworm or cancer. Since none of us were getting infections I doubted it. I thought about it and I remember thinking- use your science degree for this...yeast like what? SUGAR...ok if the yeast are living on sugar - where is it coming from? We have Type 2 diabetes on both sides of my family as well as on Kev's mom's side.
I looked at Kev and said..should we have her tested for diabetes? He thought about it for the longest time and said yes. We had also discussed checking her thyroid since we have issues on both sides. FINALLY it felt like we were getting to the bottom of the mystery. I called our doctor and made an appointment to discuss.
1.28.2013
Christmas Photo Shoot
I was lucky (and nervous) to be asked by my youngest's school friend to take pictures of them for their christmas card. It was my first shoot in a while and it was at their house. The weather would NOT cooperate on taking many pics outdoors but I'm so glad I did this shoot. They were super easy to work with and we got some awesome shots. I think they were super happy and I'm glad. My goal is to go in when I'm working and be efficient and get that shot. I find I don't necessarily want this as a major business but I do want to be taken seriously. I just know once you make it something you have to do- the joy can go out of it quickly!
Times are a changin'
Wow...it's been forever! I'm officially a Biologist and am almost done with my masters now for Environmental Biology. Kids are getting big! K and M are in high school with K graduating in the spring. AG is in grade school. I'll attach a more recent picture...things have been hectic (as always) but maybe I can try and post more. :) M is taller than me now and his sister! This is thanksgiving with my Gram who just turned 98!!!!
Fee
10.21.2010
Fall Shoot
Big thanks to my friends for putting up with me today. You guys were AWESOME. thanks for sharing your special day with me and allowing me to photograph you both. What an honor.
Got a chance to meet up with some good friends today. Photographed them before the arrival of their 2nd child. We had a lot of laughs and it was nice to photograph adults. But I need to learn to tell them what to do more. I'm so used to following kids and snapping when I can
Got a chance to meet up with some good friends today. Photographed them before the arrival of their 2nd child. We had a lot of laughs and it was nice to photograph adults. But I need to learn to tell them what to do more. I'm so used to following kids and snapping when I can
Here's a sneak peek of some (promise S...I will get you the disc asap!)
M and S are so cute together.....and S is just adorable pregnant. I was jealous. We stayed out til the sun started setting and then it just got too chilly. Most actions are PioneerWoman or AMP or CoffeeShop Actions. :)
SOOC
9.08.2010
It's FALL
Finally it's cool enough to bake. I've been baking pies and sauces and wonderful dishes. I just love fall and the coolness in the air. I'll be back soon with more menus and recipes. Sorry I took a break for awhile. School and life just got in the way. Rest assured I am still cooking and baking. How about all of you?
More photos
I've been getting asked a lot to take pictures. I love to do it. I have a hard time however charging for my time. I'm not a "pro" but am fairly decent I think at this. I just recently found an awesome tutorial site and got into the nitty gritty on my camera. I changed parameters and also messed with the custom settings. The changes are just amazing. Today's pictures are from a photo shoot a my favorite do-not-go-to park at night. :) I seriously watched at least one drug transaction while there. I am only going to go when MrK can go to protect me from now on.
We had a great time though and it only took a little bit of time. It's amazing how quickly shooting can go!
Welcome back old friend?
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| All Grown Up- 2nd Grade |
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| Sophmore Year! |
This blog annoys me in some fashion. :) It sits there waiting for my attention (a bit like frontierville ) and then I come here and get bogged down with photo headers that are outdated, etc. I'm going to try and be a better blogger. It's not a public blog (meaning if you don't know the address- you aren't coming here anyway). So I am wondering why I even bother. Except I like talking to myself :) We are having an easy slide into the school year.
My schedule the last year has been grueling. This year, I am at school 2 days a week. I am taking Physics 2, Physics lab, Plant Physiology, Plant Lab and Stats. Not a bad schedule. I had Organic Chem 2 and Physics 1, Physics Lab this summer and got straight A's. So school is going well.
My oldest is in her 2nd year of High school...we had the opportunity to go see the football game last week. It's so astounding to me that she got this old. I swear we agreed she would not. And it truly went by in a blink of an eye. She has a boyfriend and a good group of friends and we appear extraneous at times I think.
My middle guy is in his 2nd year of Middle school....and is growing his hair out. He looks so cute. He's been composing music lately and is pretty darn good at it.
My youngest is starting 2nd grade- so all three are in their 2nd year of school this year..kind of neat. Life is just flying by in a blink of an eye. I'm trying to keep my eyes wide open so I don't miss anything!
-Fee
My youngest is starting 2nd grade- so all three are in their 2nd year of school this year..kind of neat. Life is just flying by in a blink of an eye. I'm trying to keep my eyes wide open so I don't miss anything!
-Fee
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| 7th Grade! |
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