Thursday, January 30, 2014

HOW HIGH BLOOD SUGAR AFFECTS YOU

By Angeline M. Duran Santiago

Why is it that I make such a big deal about Type 1 Diabetes? I mean, ok, you have to deal with it, like so many others, but why writing about what you're going through?


The moment you begin to investigate what Diabetes does to the one you love, your world begins to change. It has to. You have to truly see what things like sugar, certain foods, and stress can do to slowly deteriorate the body. It's a big deal. To me. Maybe you're like me, a parent wanting answers, help, and guidance. But, oh, how little of that is really out there. It seems everyone that writes about T1D, writes the same thing over and over, like copying from one another, but no one is really saying anything you didn't already learn in the hospital or from your Diabetes Educator. Well, I'm still learning and you might really think I've gone crazy now, but I want to try something with my son. I keep seeing it and I've begun, but not daily. His high blood sugars are demanding I set higher goals.

Let me share some things I've learned, (yes at my age, still learning.) If I give my son a plain bagel, notice it's plain, I have to count 63 carbs. That would mean 10 units of Novolog. But, if I give him 2 slices of Wheat bread, I just have to give him 2 units of insulin because those two slices equal 24 carbs. A difference of 8 units of insulin. I do this with pasta, pizza, crackers, and rice. Same idea. The less carbs, the less sugar I'm giving him. Oh, yeah, I see carbs like sugar now.



High blood sugars hurt someone with T1D. They completely change in appearance, mood, energy and behavior. When my son's sugar levels are high before school, it is very hard for him to be on time to class. I have to work towards bringing the levels down with insulin and water. But, he will remain feeling very sick and out of it for a long time. Sometimes, I have to keep him home.


In my home, we're not big on soda or fruit drinks. I always have to keep juice or something sweet to drink in case Jacob's sugar gets very low. At that moment, I have to raise his sugar up and drinking something very sweet is one of the ways to help him, especially during an emergency when sugar drops. But, as a fun drink, no, absolutely should be. Look at the amount of sugar in these food items.


I've seen people sit down with a bottle of soda and gulp it down easily. The amount of sugar in these drinks is so great and so harmful. Parents just give it to their kids without imagining the risks to their health, to their body. My son didn't get T1D from obesity, eating sweets, or the regular thoughts on how it shows up. One day, the body just turns on itself and decides to self destruct. So, if your child is healthy, why would you not take care of your child? 







Thanks to my sister n law, Jessica, for sharing this.


Here are some things I've read and heard a lot about. Call me crazy, like I said, but I have to try and see what happens. I've read that Okra and Cinnamon may help lower blood sugar levels. I don't know how Jacob will react to trying these new additions, but it is my obligation to at least try. Supposedly it takes the Okra two weeks to do its magic. Don't you think? If it doesn't work, well at least I can say, "I tried." You never know, right?


I don't know what else to do and I sure can tell you I am not just sitting back to let things get worse. There has to be a way to get the levels down. This is my trial and error moment. The food changes are not making much of a difference. I mean, ok, I know, I've only been at it for about a week, but it seems those numbers keep climbing. Tomorrow I shall do my best to find Okra and Cinnamon to test and see if the blood levels decrease. It's by faith we believe we can move mountains, so why not move the sugar levels down? 

We shall see what happens. Have to believe good things can happen even when it's all going not so great. Cheer me on and say a prayer. If it works for my son, you'll be the first one to know about the success or the failure. Take care.

Wednesday, January 29, 2014

SOARING AND NEVER FALLING

By Angeline M Duran Santiago


Lately it seems my son is always soaring. No, he's not flying up in the sky like a bird, a plane, and no, especially not Superman. (Though I think he is most definitely SUPER!) His glucose levels are having a hard time understanding they have to come down. 


I haven't given them the option of thinking about it. From changing meals to regularly staying on top of everything, I have done pretty much everything I can think of to knock those numbers down. They are frustrating. Each time I check his sugar or he checks it, we look at the glucose meter and it looks back at us with an attitude, saying, "And what?" 



It may seem like you keep soaring and flying high like a kite lost in the winds of Spring time. It may even appear that my efforts are lost and you've won, I'm defeated. But, take a good look at me, Type 1 Diabetes. I'm still staring at you everyday when I take care of my son, and every day I will remind you that you do not have permission to remain in his body, and do as you please.

Me? I'm getting wiser, stronger, and bolder in my prayers. I'm learning not only how to manage your uninvited presence, but I am not giving up. You will come down, sooner or later. Every airplane has to land. Every bird needs to find a place to rest. High glucose will have to acknowledge that my son's body is going to respond to the insulin I give him. His body will not resist the insulin. I declare that my son is strengthened and will live a long life.

I am also a mom filled with faith. Not everyone believes the way I do and that's OK. I have enough to share with you. I believe the God of Heaven hears my prayers and the prayers of my family and friends for Jacob, for you, too. Do not despair. Do not give up. 

Continue to try all you can to bring those sugar levels under control and as you use your medications and diet, try a little bit of faith. It can't hurt. Lord, help those in research find a cure and help it be available for everyone, everyone, Lord. And, God, stretch your hand of healing upon my son, my brothers, and everyone that reads this today, in Jesus name, amen.


Tuesday, January 28, 2014

CHANGES FROM CHILDHOOD TO YOUNG ADULT

By Angeline M. Duran Santiago     DIABETIC'S MOM JOURNEY


Once more, she awakens and her face has already begun to show the frustration and annoyance brought on by her friend, constantly sleeping over, mostly uninvited, but there. I can see she wants to shake her off and tell her to go away, but she lays her head on the pillow and reminds you, "Did you check your sugar?"

Sleepover friend? More like a backpack full of bricks glued to your back kind of friend, right? Maybe that's how she sees getting up every day with Type 1 Diabetes each day. Maybe that's how he feels when you tell him to get up and go to school, and he asks for ten more minutes. The sleepover friend has been talking all night, keeping your child up, sugar levels raised. You've tried so many ways to keep it down but it seems nothing works. And, now that your child has become a young adult, they no longer want to hear the same questions you've asked a thousand times. "Did you check your sugar?" "Did you bolus or cover yourself?"



They are tired of years of the same ups and down, good and poor advice, over care and lack of care from doctors, and good intentions from family but at times just not wanted. How do you reach your child when they turn you off in their mind and shut themselves away?

I don't know. Personally, I wish I had the answers. And I wonder if it would make any difference if I said, "I just want you to know that my life would be so much happier if I saw how well you're doing each day!" I wonder if saying, "When you are well, I feel like the strongest, most powerful woman on earth!" would make any difference.

We don't want to scare our kids or get them to feel discouraged or depressed. We want them to know we care and that those high blood sugars will take effect in some scary ways in their body. Find and make the time to talk about people you know that have undergone major changes in their lives because they thought, "Hey, I'm still young, I can live how I want, eat as I please, and nothing will happen." Wrong. I've seen in my own family the devastating effects and consequences of poor care, unintentionally and never on purpose. All because we see ourselves strong, young, invincible. 

Dear friend, I pray the Lord give you wisdom to speak to your teenager who has Type 1 Diabetes. I pray the Lord creates a special bond for you and your young adult to share without arguing and talk about ways to take care of himself or herself. Be encouraged, dear parent. Give it some time and they will listen.

Saturday, January 18, 2014

BABY STEPS IN THE KITCHEN



There's no simple way to live your life with the billions (OK, maybe I'm exaggerating a bit) a thousand restrictions on what you can and cannot eat, should and should not eat, and what is good for you and what will hunt you in your nightmares and scar you for dear life.

As a parent of a Type 1 Diabetic, I feel as if I don't even know what to cook anymore. I've tried the diets, the low carb, no carb, gluten free, and flavor free. Somehow no matter what I try, I end up gaining lots of weight. (Shhh, maybe it's the chocolate cookies hidden on the top cabinet) Anyways, I'm super frustrated and I feel like I don't even know how to cook anymore. Walking down the aisles in the supermarket with my weekly meal plan has become a very hateful task. Food prices have not only soared but man, what is out there that won't make those glucose levels go so high, they turn into astronauts and want to explore outer space.


So, it's without shame that I share I am in my baby steps in the kitchen again. There's no fear in saying, "I want to learn something new." I've already started getting some great feedback from friends in TuDiabetes.org. Friends have reached out with some ideas and even my daughter has pointed me to some great sites. Here's my dilemma. I'm a visual, hands on learner. I'm not great with learning with a cook book, (get bored immediately) but if you share with me, It's easier. I'm ready to learn- baby steps.



So, if you're going to share, make the steps as if we're in the kitchen together, (some great music to dance to on) and talk to me like I'm there with you. The doctor is starting to believe my son is insulin resistant. This has been an idea for some time. Before putting him on a different medication treatment, I said, "Let's try something first." 



I am excited to try something new! So, Here's my plan:

1) Meal changes (with new meal ideas)

2) Pray and believe God will use the new meals to bring an improvement in his numbers

3) Increase the activities (Yes, for me, too!)

So, here the adventure begins. The kitchen becomes the classroom and I am looking forward to good times, mistakes, and experimenting what works and what doesn't. For those of you that already shared meal ideas, I will begin this week and will do my best to post how it goes with my son's eating and sugar levels.





This is what High Blood Sugar Feels like for a Diabetic. So you see, imagine your son or daughter, your brother or sister, parent or friend, going through life feeling this way. Someone once described high blood sugar as the worst hangover you can imagine but you can't get it to go away. I can't even begin to imagine what that's like.

So, I look forward to sharing with you as our new adventure begins. I'm going to take it slow, trying a little change here and there. A lot of changes, all at the same time will not work, but gradually adding and changing sounds good to me. Above all, if this is your family situation too, I pray that you too can take a leap of faith and try something that will be a blessing physically for your loved ones. 

Thank you in advance and God bless you greatly!

#type1diabetes #diabetes #diabeticchild #juvenilediabetes #t1d #highbloodsugar #insulinresistant #novolog #highglucose #sick #diabetis #azucaralta #lowcarb #lowcarbmeals #healthy #healthyfood #newmeals

Wednesday, January 15, 2014

CAN YOU SHARE YOUR RECIPES WITH ME?


If I tell you I am not frustrated tonight, I'm not speaking truth. You see, I really am sort of at the height of frustration and I don't think there's anything higher than where  I find myself this week. 

Things have been slowly working out in my son's school. So, you know I'm not sharing about that. What is concerning and bugging me a great deal is the fact that my son's sugar levels just don't want to go down. I've gone from being told I'm doing a very poor job as a parent by my son's endocrinologist, to now, after two years of the same constant highs, to finally saying, "I think he's insulin resistant." No apologies, nothing. For the longest time, I've felt like miserable, trying all I could to help these high glucose levels change. The constant calls at work have made me stop working so that I can be there when they call from school.

Today, he returned to Novolog. He began on Novolog, then was placed on Apedra, which seemed to work well, but now it seems as if no matter how I cover him, I never did. There is zero change in my son's numbers. So, it's back to Novolog. I'm also giving him Cinnamon vitamins. I've been reading that it helps lower blood sugar. I don't know if it will work, but if it is working for at least one person, then I think trying won't hurt. I guess your feedback will let me know if this is a good thing or not. 

Can You Help Me Try Some New Meals?

Here's where I am looking forward to meeting those of you that take the time to read and respond to my journal. As a Puerto Rican, I was raised to learn to cook traditional meals that include rice, beans, meat, potatoes, spaghetti, and well, these are some of the norms in my home. This is what I am searching for. I am looking for new recipes, new meals, low carb dishes and deserts, (not the ones in books because I have a lot). 

But, real life meals that you, as a Type 1 Diabetic or the parent/caretaker of a Type 1 Diabetic prepare at home and you see normal or almost normal sugar levels. It doesn't have to be hispanic, latino, meals from the island like me. If it's working, then I want to learn from you and try something new. Can you help me with this one? Would you share your recipes with this NYC mom who desperately wants to see something less than 200 every day in my son's glucose monitor?




Think about it. My email is aduran1118@gmail.com.
I promise to try your meal plan/recipe. I will share my son's reaction and also how his sugar levels change through this process. I'm excited. Can you be part of my search for something new that will make a difference in my son and maybe someone else's life as well? I will start out with some I found on my own online, but I really want your recipes, my friends and family that are with me, daily on this journey of being there for our children and loved one. 

Thank you all so much! Hugs your way from my home to yours.

#sharerecipes #needdiabeticmealidea
#recipes #recipe #lowCarbMeal #highsugar #mealplan #diabetic #DiabeticChild #type1diabetes #t1d #insulin #novolog #apedra #pump #insulinpump #glucosemonitoring

Tuesday, January 14, 2014

SCHOOL NURSE RESPONDS

If you've been following updates on my son's care in school, you will remember I had to make a formal complaint and get many people involved in order to put a spotlight on the poor management and medical service being provided to my son by the school nurse.


Jacob, on his way to school with brother Aaron
The supervisors were quick to contact me and come up with a plan to resolve the situation quickly. Even after providing a meeting and going over how to take care of a Type 1 Diabetic child, my son was then mistreated again. This time I believe the anger of being reported on gave way and the school nurse became someone who no longer wanted to even look at my son.

If you know me, you'll know that I immediately contacted all the same people again. This time, there were also adults in the school building that witnessed the way my son was wrongfully spoken to and treated and I no longer had to speak up. God used these people in the school building who work there to become voices for my son in my absence.

What can I tell you? Today I am pleased. How? Well, I believe that when we pray and place all matters into God's hands, He will intervene and place the right people in our paths. The nurse called me and although her voice was robotic and cold, and I believe she was not alone, but had a supervisor with her telling her what to speak to me about, I accepted her apology. There was one thing she said that stood out to me. 

"I want to start over with Jacob. I want to start fresh as if it was the first day." What a great thing to say, even if it didn't come from the heart. To me this is telling me that she is going to at least try to be the professional I am relying on if my son needs medical attention in  school. The truth is, she has so little to do. Jacob does everything on his own. Where she comes in to play is when his sugar drops to very low, or is sky high and he might not be able to think right or do the things he should do because he is not well. 

Thank you. Thank you for saying, we're starting over. That's all I ever wanted. To know that you take your job with such heart that I can try to go back to work in the near future. I want to know that I will not be called in to take him out of school because you don't know what to do or don't want to go through the trouble of monitoring him. Thank you for listening to the people that have come your way to remind you of who you are in the school building and that if you're going to work there, students depend on you. Even for small things like just counting carbs or watching a child check his sugar, you matter. Who you are is important and your role is so special to us as parents.  

You become my eyes when I can not see my son. You become my ears when I am not there for him to tell me he doesn't feel well. You become my hands when I am not there to give him a correction or some juice. I value you and always will. Yes. I think it's a great response that you've shared with me. "Let's start all over again, for the love of Jacob."


#nurse #type1 #type1diabetes #t1d #school #diabetes #diabeticchild #schoolhealthcare #schoolnurse #hypo #hyper #sugar #parents #new #start #feeling #sick #response

Thursday, January 9, 2014

DEAR SCHOOL NURSE




I send my son to school with the confidence he is safe at all times. I have no idea what it feels like to be a teenager in a classroom today. Even less, I can't begin to imagine what it must feel like to have Type 1 Diabetes and go to school daily with so many things happening in your body and mind.

My heart is broken but I am also outraged when I see the careless and cold attitude of many school nurses in schools today. There are so many that are dedicated and take their profession to heart like a calling from heaven. Others, I don't know what made them become nurses because they checked their hearts at the front door the moment they took their first course.

Yes, I am being harsh. You see, my son's life is important and when someone thinks mistreating my child is fine and without consequences, I can't sit back. My child has enough baggage every day for any school nurse to feel permission to behave unprofessionally at any moment.

What can parents do when school nurses are insensitive, uncooperative, rude, and hurtful to our children.
I've learned that loving people can make the difference. I tried to win this nurse but she was too hung up in her rude and angry world and gave me the cold shoulder. So, after one more chance, I reported her. I didn't just go up to the school to file a complaint, I emailed every Diabetes Advocate and Help site I found, and I emailed and contacted the NYS Health Department for the Department of Education. It has to be done. We cannot wait til we get a phone call that our child has been taken to the hospital because a trained nurse was not willing to provide expected services for our child.

We send our children with such abandonment and trust in these medical caretakers. What's going on?
If my child has a seizure in the hallway, alone, what story will you as a nurse make up to cover your behind? Lies. I will be given lies because my son will not be able to defend himself. What excuse do you have to speak so poorly to a child that is already feeling sick? None. You behave that way because there is no hidden camera on you to force you to show humanity and decency.

I am extremely grateful for the way the administrators and supervisors I contacted have taken my son's situation into their hands. They've visited the school, worked on providing needed training and help for the school nurse, and kept constant contact with me. Unfortunately, the school nurse's heart and mind were not changed and today I made the last call. Now she will face the possibility of losing her job or being placed in another school. This was never my desire or intent. But my son needs the best care when I am not there for him. School nurses need a lot more than medical training. They need skills of the heart.

#t1d  #schoolnurse #diabeticchild #diabetesinschool #typeone #typeonenation #type1diabetic #diabeticblog #parentofdiabeticchild #sickchild #schoolcare #medicalhelp #seizure #lowbloodsugar #highbloodsugar #training #education #services #medicalservices #professionalism #care #JACOBD #face 3facebook #google