1 month down, the rest of my life to go...
abatonfan
Posts: 1,120 Member
It has finally been one month since I found out I was diabetic (18 years old). Even though it has been a crazy month, I hope that writing this will help give me some closure on what happened and allow me to continue through the grieving process.
I am very thankful for my guardian angel, my hairstylist. She was the first one who knew that something was going when, even when it was only my second visit with her, she noticed that my hair was a lot thinner than before and I was losing a lot of hair even as she cut it. I commented that, since I moved into the area less than four months ago, I lost over 60 pounds (from 210+ to 150 in the ER). She recommended that my mother and me go to the walk-in clinic nearby my high school, because she believed something was going wrong when my thyroid.
When I was in the clinic, the doctors noticed that I was spilling out large amounts of ketones in my urine and also had a blood glucose reading in the 560's. After telling them my main stmptoms (weight and hair loss), they ordered me to get to the nearest hospital emergency room (a few towns over and a 30 minute drive on the highway), or I would have to be taken there via ambulance. I was in the middle of DKA and could die within less than 24 hours if I did not receive emergency medical treatment.
While in the Emergency room, the wonderful staff were able to bring my glucose down to the 190's within eight hours via IV insulin and fluids. Shortly after, I was brought up to ICU, where I stayed there for about 30 hours. While there, my glucose levels stabilized to around 140-ish, and they began teaching me my treatment plan (testing and injecting insulin). I went down to a regular room and stayed there for monitoring, and then left by the end of Saturday.
So far, I have been able to control my levels. I was given an insulin to carb ratio less than a week after leaving the hospital and have found managing my diabetes a lot easier with it. So far, I am on a 1:8-1:10 ratio with Novolog plus correction and 19 units of Lantus nightly, though the medications might change by the end of the year. Unfortunately, Novolog is not covered by my insurance, and I might switch to Levimir because of the intense burning I receive when taking Lantus (even when it's at room temperature, the alcohol is dry, and I rub some ice over the skin before injecting).
Luckily, my glucose levels seem to be in the 70-130 range before a meal, and the 90-170 range after eating. I am still really high in the mornings though (at least 140+), but it is better than the 190+ readings I received before upping the basal dose. I am getting a few spontaneously high readings (207 after lunch yesterday but came down to 140 after drinking some water and waiting a half hour), but it might be due to some math errors when calculating my total carbs.
I have gained back a bit of weight since the diagnosis, from 150 to 165-ish, but I have been feeling a lot more energized since the diagnosis. Coincidentally, my thyroid hormone is abnormal, and I will have to get more bloodwork done by the end of the month to see if there is a problem with my thyroid.
From all this, I have a few things of praise and frustrations.
I am, again, very grateful for my angel, as I would not be here right now if she did not tell me to get my symptoms checked out. I would have experienced more symptoms of DKA and believed I had the stomach flu, and by then, I could have easily gone into a diabetic coma.
I am thankful for how supportive my family, teachers, and friends have been, though I am frustrated at the lack of education for diabetes. It is difficult keeping my mouth shut when I am in a conversation with a group of people in my anatomy class when one girl would turn to me directly and say "my mom tells me to limit my sugar so I don't get diabetes." As stated for the millionth time, I did not get this from eating too much sugar, but instead, my body considered my pancreas the enemy and began to attack it to the point where it could not make insulin. I am allowed to eat whatever I want (yes, even cake), as long as I carb count for it and take the appropriate amount of insulin; the only thing I cannot drink is regular soda, and that is only because it is an empty food with tons of sugars.
I learned that, through all of this, I have to maintain a positive attitude. Even when I was in the ICU trying to recover from DKA, I was lucky that I found out before the complications could cause serious damage and always had the attitude of "it could be worse but I am thankful for the early intervention." While in the hospital, I also noticed that the staff were a lot more appreciative of people who did not consider the diagnosis a death sentence and still took the time to thank the staff for their care.
It was comforting finding other people who know what I am going through. Just a few days ago, I was talking to a friend on another website and also found out he was a type 1 diabetic. I took comfort knowing that he empathized with me on the scariness of ICU and DKA, the pains of Lantus, and the intense insulin:carb counting.
One month with this diagnosis has past, and I feel ready to take on the rest of my life with diabetes.
I am very thankful for my guardian angel, my hairstylist. She was the first one who knew that something was going when, even when it was only my second visit with her, she noticed that my hair was a lot thinner than before and I was losing a lot of hair even as she cut it. I commented that, since I moved into the area less than four months ago, I lost over 60 pounds (from 210+ to 150 in the ER). She recommended that my mother and me go to the walk-in clinic nearby my high school, because she believed something was going wrong when my thyroid.
When I was in the clinic, the doctors noticed that I was spilling out large amounts of ketones in my urine and also had a blood glucose reading in the 560's. After telling them my main stmptoms (weight and hair loss), they ordered me to get to the nearest hospital emergency room (a few towns over and a 30 minute drive on the highway), or I would have to be taken there via ambulance. I was in the middle of DKA and could die within less than 24 hours if I did not receive emergency medical treatment.
While in the Emergency room, the wonderful staff were able to bring my glucose down to the 190's within eight hours via IV insulin and fluids. Shortly after, I was brought up to ICU, where I stayed there for about 30 hours. While there, my glucose levels stabilized to around 140-ish, and they began teaching me my treatment plan (testing and injecting insulin). I went down to a regular room and stayed there for monitoring, and then left by the end of Saturday.
So far, I have been able to control my levels. I was given an insulin to carb ratio less than a week after leaving the hospital and have found managing my diabetes a lot easier with it. So far, I am on a 1:8-1:10 ratio with Novolog plus correction and 19 units of Lantus nightly, though the medications might change by the end of the year. Unfortunately, Novolog is not covered by my insurance, and I might switch to Levimir because of the intense burning I receive when taking Lantus (even when it's at room temperature, the alcohol is dry, and I rub some ice over the skin before injecting).
Luckily, my glucose levels seem to be in the 70-130 range before a meal, and the 90-170 range after eating. I am still really high in the mornings though (at least 140+), but it is better than the 190+ readings I received before upping the basal dose. I am getting a few spontaneously high readings (207 after lunch yesterday but came down to 140 after drinking some water and waiting a half hour), but it might be due to some math errors when calculating my total carbs.
I have gained back a bit of weight since the diagnosis, from 150 to 165-ish, but I have been feeling a lot more energized since the diagnosis. Coincidentally, my thyroid hormone is abnormal, and I will have to get more bloodwork done by the end of the month to see if there is a problem with my thyroid.
From all this, I have a few things of praise and frustrations.
I am, again, very grateful for my angel, as I would not be here right now if she did not tell me to get my symptoms checked out. I would have experienced more symptoms of DKA and believed I had the stomach flu, and by then, I could have easily gone into a diabetic coma.
I am thankful for how supportive my family, teachers, and friends have been, though I am frustrated at the lack of education for diabetes. It is difficult keeping my mouth shut when I am in a conversation with a group of people in my anatomy class when one girl would turn to me directly and say "my mom tells me to limit my sugar so I don't get diabetes." As stated for the millionth time, I did not get this from eating too much sugar, but instead, my body considered my pancreas the enemy and began to attack it to the point where it could not make insulin. I am allowed to eat whatever I want (yes, even cake), as long as I carb count for it and take the appropriate amount of insulin; the only thing I cannot drink is regular soda, and that is only because it is an empty food with tons of sugars.
I learned that, through all of this, I have to maintain a positive attitude. Even when I was in the ICU trying to recover from DKA, I was lucky that I found out before the complications could cause serious damage and always had the attitude of "it could be worse but I am thankful for the early intervention." While in the hospital, I also noticed that the staff were a lot more appreciative of people who did not consider the diagnosis a death sentence and still took the time to thank the staff for their care.
It was comforting finding other people who know what I am going through. Just a few days ago, I was talking to a friend on another website and also found out he was a type 1 diabetic. I took comfort knowing that he empathized with me on the scariness of ICU and DKA, the pains of Lantus, and the intense insulin:carb counting.
One month with this diagnosis has past, and I feel ready to take on the rest of my life with diabetes.
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Replies
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Welcome to the club that no one joins by choice!
For.me it has been just shy of a year. I know where your coming from. I had to drag my docs to the correct diagnosis. Since I was 60 when I presented the er and primary assumed I was a type 2. With a BMI of 24, very active, in BKA , BG of 485 and dropped to 140 in 2 hours with 10 U novolog. ---Not!!!!!! I made sure they did the full antibody work up C-peptide, thyroid panel etc and got connected in with a good endo ASAP.
Fortunately I have.not.shown signs of other auto immune diseases yet, but as a T1 I will need a yearly followup since we are.at.risk. Thyroid -Hashimotos disease is the most common, be on the look out for celiac as well.
Sounds like you have a good support system so far. Good books to read to help you get up to speed are
Think like a Pancreas
Using Insulin, and Pumping Insulin when your thinking about a pump - has a good section on using CGM's
My diabetes science experiment
Diabetic athlete Handbook
The food police will always be out there as well as a large amount of misinformation. You will have a lot of people sharing all the quack cures etc that do not apply to. T1.
You might want to do an education presentation for your science class that shows all the misinformation and what the differences between T1vs T2 and how the needs and treatments are so very different.
Friend my if you want. Give a shout if you have any question, I check the boards on a regular basis.
As for lantus burning you may find that it does not sting as much if you split the 19 units into two shots in different sites. You can use the same needle just do half and then the other half at a different location. If you need to change to humalog due to insurance coverage it will more than likely play the same as novolog. For most it's the difference between coke and Pepsi.0 -
Just a quick update. I am tempted to rip out my girl parts after all that happened this weekend.
I had my first nighttime low Saturday night at about 10PM. Though I was at 71mg/dL, I was super irritable, shaking, and having severe abdominal pains (I wanted to test because I thought I might be high and going back into DKA).
I then had two lows on Sunday. One is my "all time" low, 59mg/dL at about 3PM and another one at 67mg/dL at 7PM.
I sent two emails to my doctor on Sunday, one about the nighttime low and one about the all-time low. The cause for the nighttime low was simple, because I exercised later on in the evening, though they guessed that my all-time low was caused by taking too much insulin.
Luckily, school was called off for me the next day, which allowed me to more closely monitor my sugars (as with today).
The next morning, I thought my meter was acting up, and I called the hospital's endocrinology services to see what to do. I tested for my before breakfast reading and was in the 230's. I thought it was high and tested after a minute of waiting, and my glucose came down to 189. They were not in the office yet, so I took a third reading and would correct for whichever "extreme" reading is closer to the third reading. It was at 211, so I corrected for the 189 reading.
The hospital called later that morning, and my insulin:carb ratio was changed from 1:10 to 1:12. I used the 1:12 ratio for lunch.
At about 4:00, my glucose spiked up in the 275's. I drank some water, tested for ketones (negative), and it came down to the 260's. Less than an hour later, it came up to 369. I drank more water, mastered peeing on such a tiny stick (negative for ketones for all the times I tested, usually every time I had to go to the bathroom, which was once every hour), and tried not to freak out. I tried to call the hospital to report this really high glucose level (highest recorded level other than the 560 while in DKA), and the lady on the phone said that they're out of the office and I will need to call them tomorrow to report a glucose. I sent an email to the doctors and told them I will switch back to 1:10 for my dinner and correct for it.
After correcting, I slowly came back down to a normal level. By 9:00, I was at 96 and considered my levels normal enough to go to bed without having to check my sugars every half hour to an hour. 45 minutes later, though, I went low at around 65, though it was a lot easier to bring up than it was to bring down my sugars.
I told my parents I was going to stay home today so that I can contact the hospital personally about this weekend, and I wanted an extra day to monitor just because I didn't want to worry about having to leave the classroom constantly if I was suffering a low or having to go to the nurse's office to check for ketones or go to the water fountain every time I am high. I also complained that, because of my lows on Sunday and highs on Monday, I was unable to do much of my homework or study for my exams (thanks, AP chem teacher) because of the amount of time it took to treat both issues. Luckily, school was called off today because of bad weather, and I have another day to monitor and pray that this hormonal rollercoaster is over.
I told the doctors multiple times that this is the week before my curse is due, and they agree that this could all be because of the hormones. My sugars were almost perfect on Saturday (was in the mid 80's for most of the day), and I thought that maybe I was finally able to have my sugars under tight control. :laugh:
I am hoping that today isn't as crazy as the past few days. I'm sure the doctors think I am crazy, especially when I have had to contact them more than three times this weekend.0 -
Since I was 60 when I was dx'd I've not had the pleasure of TOM and what it can do to your control over the short term.
From what I have seen on the online diabetes boards this is very common and once you get the hang of the timing you can set up a different dosing schedule for when it kicks in.
Have you found the boards on tudiabetes or the American diabetes association web site yet? They have a lot of knowledgeable folks on the boards who have been there an understand and may have a wealth of personal experience to share.
There are general sections for T1s but also for teens and young adults etc. It may help to find some who is there with you!0 -
Hi. I'm a T1, 43 yrs. I was 6 when I was diagnosed. I've seen a lot of changes in diabetes care in those long years. I first started on only a long acting insulin once a day, and Bg's every 2 weeks at the lab, with results being phoned to my mom a few days later. They'd call and say, "Terrie's blood sugar is high, bring her home from school and give her more insulin." By that time, my Bg could have been anywhere. I'm glad for the home glucose testing and the new insulins. I've been on the pump for quite a few years now and even though it means being attached to a pump 24/7, I can't imagine life without it.
I'm sorry you've been having trouble keeping your sugars in a "normal" range. I don't want to discourage you, but that is the nature of diabetes. If you ate the same thing, in the same amounts and exercised exactly the same every day, your sugars would still fluctuate from day to day. It's not your fault. Emotions, hormones, the weather :laugh: all conspire to make your sugars crazy. As you learn more about your diabetes, you will be a little better able to adjust your insulin needs. It's frustrating but we all survive. Hobbit is right, read, read, read!!! And don't be afraid to question your doctor. It might help you to write down info about when you have an unexpected high/low. Info about food/amount eaten, exercise, emotions/stress, TOM, excitement(even happy things) can help to identify patterns or changes that have occurred. Hang in there!!! And welcome to Club T1!!! Someday we will all have our artificial pancreases and be laughing about the old days, when we all had to test our blood several times a day and count our carbs. I can hardly wait!!!:happy:0
