Tuesday, October 12, 2010

Dear Diabetes...this isn't a friendly reminder!

Dear Diabetes,

I just want to remind you how much you suck! You are taking a lot of my time and energy. You hurt me over and over again. I even have to endure pain just to make you calm down! What exactly do you have against me? So my pancreas doesn't work, that is not my problem so go pick on someone else.

You are constantly haunting my every thoughts. Even in my dreams you rear your ugly head. You are just like the boogy man, except I can get him to go away. You make me constantly worry about what you are doing to my body. You make me worry if I am high or low. You make me worry about exercising or being alone. You make worry if I will ever be able to have kids.  It is a constant mind game with you, and I am tired of it.

Not only do you make me worry but you make my family worry too. They don't understand you like I do. They don't know the stress you cause in my life. They don't know the anxiety you welcome me with every morning. They don't know how you wake me up several times at night and make me go to the bathroom. You are a sneaky little booger!

I am certainly not happy with our current relationship. You strap me down on that roller coaster and take me for a ride. All of the ups and downs are a constant reminder that you are still here. You are ruining my grades in school and humiliating me in front of my class mates. You are a big ugly bully.

Please try and remember that you picked me. I want nothing to do with you! I want to wake up in the morning and be totally normal. I don't want to check my sugar 10 times a day. I don't want to inject myself with insulin just to stay alive. I don't want to pass up that birthday cake on my own birthday. What I do want is for you to pack up your disease and leave me alone.

I thought I was supposed to be the expensive one, but then I met you. You are a financial burden who likes to pick my pocketbook. Every month you present me with my bill, you even act like you want a tip! What's up with that?

You have employed my family and friends to become diabetic police. How much are you secretly paying them? It is like you are a little whisper in their ear reminding them to ask me if I should eat that or not. Do you know how annoying that can be?

I would love to take a vacation, but I hate that I have to bring you along. The fact that you get to fly free just makes me cringe. Paris sounds lovely but chocolate eclairs and pastries don't mix to well with you by my side. Plus, you don't deserve to see the Louve'. I know you will cause trouble like you usually do and ruin my trip, so it may be best just to stay here where you belong.

With all this said, I know I have to come to terms with you being a part of me. No, it will not happen over night but I think slowly I will be able to accept you. I imagine we will still be enemies though, in fact I know we will.

I truly hate you,
Kimberlee

Monday, September 13, 2010

Diabetes Research

Dear Family and Friends,

I have been presented with an opportunity to participate in a diabetes research study at the University of Florida. They are seeking 15 newly diagnosed Type 1 diabetics. Dr. Mike Haller who is a graduate of Duke University is very excited about this opportunity and is optimistic about preserving beta cells.

I try to be as independent as possible, and in the end this my decision and my decision only. I am asking my family and friends though for advice, opinions on the study, and most of all support. If you are reading this then I obviously value your opinion and would love to hear from you. You can email me at: KDJohnson86@Gmail.com or if you have a facebook account feel free to private message me on there.

The research study takes place at Shands\University of Florida, and it lasts a total of two years. This study does not reverse diabetes and it is very clear about that. However there is a chance that it may be able to preserve some of the beta cells my body has not killed off yet and that can help me in the future from having to increase my insulin doses higher.

I feel like I have an obligation to help out in this research. I may be able to help a future diabetic and that really means a lot to me. Dr. Haller and I have been in contact over this past week and he has ensured me that I will be able to successful continue nursing school while participating in his research study.

I am going to copy and paste the information about the study below so everyone has the opportunity to read it if they wish. Like I said above please let me know what you think about it. I really need your help!

ATG/GCSF Clinical Trial

What is the ATG/GCSF Study?
This is a new interventional study for people with established type 1 diabetes (T1D). The primary purpose of the study is to determine if giving the combination therapy consisting of Thymoglobulin® (ATG) and Neulasta® (pegylated GCSF) to patients with established T1D is safe. The secondary purpose is to determine if giving ATG plus GCSF to patients with established TID will preserve insulin production.

Who can participate?
Participants must have well established T1D with a time from diagnosis of greater than 4 months but less than 2 years. The age range for participants is age 16 or greater and less than 45 years of age. The first three subjects must be at least 18 years of age and less than 45 years of age.

What do I have to do as a participant?
If you meet screening requirements (separate study visit) you will be admitted to the General Clinical Research Center (GCRC) at Shands Hospital at UF for 3-4 days for the ATG infusion. The GCSF will be given beginning at the end of the infusion, and then every 2 weeks for a total of 6 doses. There are 12 follow-up visits at 1 week, 2 weeks, 4 weeks, 6 weeks, 8 weeks, 10 weeks, 3 months, 6 months, 9 months, 12 months, 18 months and 24 months. Beginning with the 3 month visit, a mixed meal tolerance test (except for the 9 month visit) will be done at each visit along with blood tests at all visits. All follow-up visits take place at the GCRC.


You are more than welcome to read over the consent form also, in fact I would prefer if you did. This way you can get more of an idea of what the study is about and how it can affect the participant. Visit the website at: http://diabetes.ufl.edu/files/2010/03/ATG-Consent.pdf

I am undecided about this study right now and I need some more opinions and some time to think all of it over before I can make a decision. I know the doctors and scientists at UF are a great group of people who are striving to make this world diabetes free!


I look forward to hearing from you all! Thanks again for your continued support.

Love,
Kimberlee

Sunday, September 5, 2010

We need you to recognize

This morning I read a story that is in a way similar to other stories I have read recently. The story was about a Type 1 diabetic that became hypoglycemic. This is a woman who usually wore her diabetic identification bracelet but had misplaced it that morning. She also usually carried glucose tablets wherever she went but had forgotten to grab them on the way out the door for her morning walk.

In her story she tells about it being cold. She says that there was thick snow on the ground and that she struggled to walk through it. She started to feel as if her blood sugar was getting low and she was thankful when she saw a fire station up ahead. All she wanted was a coke, or something to raise her sugar.

When she reached the station her sugar was so low that it was hard for her to express to the fireman exactly what was happening to her body. He immediately thought she was drunk and he called the police.

The police also thought she was drunk and took her to the county jail where she was booked and spent the next 7 days. She was wearing an insulin pump that eventually ran out of insulin. She says she threw the pump out of her cell and onto the ground and begged for a doctor. They took the pump and locked it up with her belongings and told her a doctor would not be at the jail until Monday, and this was on a Thursday.

She claims that her family was there everyday pleading with the police. She says that she became so sick that she started vomiting. She refused to eat or drink while she was there because she was so scared. When the doctor finally arrived on Monday he took her out of her cell and into a private room where she could receive saline. He did not check her sugar, nor give her insulin.

After she received the saline a lawyer was finally allowed to see her. He was able to get her sent to the hospital. When she arrived someone finally checked her sugar and it was 427, high..yes, but luckily not higher. It was there that she finally received insulin and saline to rehydrate her.

I tell you this story because there are too many stories like this out there. People are uneducated about diabetes. They are not aware of the symptoms and most often mistake hypoglycemia as being intoxicated. It saddens me, and worries me that these stories exist.

I ask again that you please be aware of the signs and symptoms because you never know when you might be the one to have to save some one's life.

Hypoglycemia:
Cold sweat
Fast or pounding heartbeat
Shaking
Nervous, excited
Drowsy
Personality change
Irritability
Confusion
Poor coordination
Slurred or slow speech

If you can, take some time to familiarize yourself with these symptoms. Thank you for your time.

-Kimberlee

Tuesday, August 24, 2010

A New Start

Today was the day that I got to visit my new endocrinologist. I must start off by saying that God must have really listened to all of my prayers because I could have not asked for a better appointment. Thank you all for your continued support and much needed prayers. You have no idea how grateful I am!

I could barely sleep last night because I was so nervous about today's appointment. On the way to Shands my stomach was in knots. Luckily I did no sitting around in the waiting room whatsoever which was very surprising! The doctor basically followed me into the room and that caught me off guard.

My new doctor listens...can you believe that? He actually listens to me! He sat in the room with me for over a hour and went over everything. He disagreed on my Addison's diagnosis, although he does believe another autoimmune disease may be wreaking some havoc.

He asked me if I had questions and concerns, and boy did I! He listened and addressed each one though and I was amazed at what he was able to accomplish for me in one appointment. I have honestly had more done in this one appointment than I have had all year long with my old mean endo.

We talked a lot about my insulin regimen and he changed it for me because what I was taking didn't make much sense to him. I am now on two types on insulin. The first type is Lantus. It is a basal that stays in my system for 24 hours. This is to hopefully keep me from getting those nasty yucky ketones. My second insulin is a super fast acting insulin that I take with my food. I feel good about this new regimen and I hope to start feeling better here soon.

We touched base on insulin pumps and continuous glucose monitors. Unlike the old endo he was very much for the idea but I do have to complete some diabetes education classes before I can be considered a candidate. I will begin those classes in September, and I think even the Hubby might be coming along for some lessons :)

There is a culprit behind my severe leg pain and unfortunately I have lost a lot of feeling in my feet and ankles. We ran some blood tests today and he is confident that within a few weeks he will have some answers for me. It is definitely neuropathy but it could be from another autoimmune disease instead of diabetes.

I got to talk to a diabetes educator for about a hour today and she taught me a lot of useful stuff. My poor husband though was about to pull his hair out because of the information overload. The educator was great though and she even showed him what he needs to do to save my life if it ever came down to that.

All in all this appointment was a blessing. Kelly and I walked out of there with hope, something that we kind of lost with the old endo. UF and Shands is the #1 diabetes researcher in the world and I feel like I am in great hands. I have a support group now and doctors who are actually on my side. It is going to be a change, but a change for the better I believe.

Once again thank you so much for all the prayers, and thank you for letting me share all of this with you!

Lots of thanks,
Kimberlee

PS- Forgot to tell you that the Doctor gave me his email address and wants me to email him my blood sugar levels and insulin dosages everyday....Just absolutely mind boggling! I have never met a Doctor as special as him!!

Monday, July 12, 2010

Update!

I know it has been a long time since I have updated my blog. My summer semester started in May so I have been super busy with school. A lot of stuff has been going on in my life though since my last update. New loves, new hates, and a lot of learning.

All my test results finally came back from my cortisol test that I had almost 2 months ago now. I tested positive for Addison's disease. My endo, Ramharrack, does not feel comfortable treating me. I feel fortunate enough though to be going to one of the greatest endocrinologist in the Southeast next month. Endocrinology of UF and Shands has worked me into their program and I feel confident that they are going to be able to help me live my life again.

My Dad took the family on vacation in June. It was the best family vacation I have ever had despite my broken hand I got out of it. We went to Blue Ridge, GA which is my favorite place to be and we stayed right on the Taccoa river. It was nice to have the whole family together. I must live there one day soon! It is the only place where I feel really happy to be.

So, that "new hate" I mentioned earlier...yeah that would be the bubblicious pink cast that is on my right arm. Did I mention that I am right handed and in the middle of my semester? Tomorrow I go to the orthopedic for more xrays and I am going to beg and plead for him to change my cast. Somehow I have rubbed through the cotton inside the cast so now it is skin on fiberglass which as you can imagine doesn't feel too good at all.

I mentioned "new loves" too. So my first new love would be the Eclipse movie..OMG! I am a huge Twilight fan so of course I love the movies. My second new love would be Stephanie Myers novel "The Host." The library finally got it in and even though I just started reading it I am already hooked. My third love? Cherries! I know I am not supposed to have a lot of fruit because of all the sugar that is in them but I can't keep my hand out of the bag of cherries. Yum Yum Yum Yum!!

And then there is life with Diabetes. Yep, still sucking. I am starting to think that when you have diabetes people around you start to think that you are no longer human. Last time I checked, which was about 2 seconds ago....I was still human. With that being said I am allowed to make mistakes just like everyone else. That's what humans do right? A mistake is typically an accident. It doesn't mean that you are a horrible person and it doesn't mean that you don't care about yourself or the others around you. It bothers me that people can't accept my mistake and move on. Instead they feel like they must remind me of it, and gossip about it and treat me like a baby that I am NOT.

Feeling misunderstood,
Kimberlee

PS- An awesome recipe for you!

"Even okay for me chicken"

2 large skinless, boneless chicken breast
Plain special k cereal
salt
pepper


Salt and pepper the chicken breast and bake them in the oven for about 15 minutes
Take the chicken out of the oven and lightly pepper it again
Crush a couple of hand fulls of special k cereal and cover the chicken breast
Bake for another 10 minutes
Enjoy the yumminess!

Wednesday, June 16, 2010

You might not see me....but here I am.

I am very quiet, in fact I don't even have a sound. You cannot smell me, I have no scent. I seem to blend in with your everyday life and you may notice me for a moment. But I am usually shrugged off. You cannot see me, I have no form. In fact, you can't even touch me. I live in many of you and yet no one can see me, hell most people I live with, do not even recognize me. Well , at least until I am ready to show them. When I am ready to make their acquaintance, and I always come as such a surprise. Sure, you think back at the signs and realize I was lurking all along. Maybe you found yourself thirsty a lot, hmmm must be hot. Or maybe you would wake up with night sweats, oh must of been a bad dream. After a very heavy carb loaded dinner, you were ready to nap, Must be tired. Never once did you think it was me, you just didn't pay attention. I feel like that person screaming for attention in a sound proof room. I tried to warn you that I was here. Sometimes I feel like the red headed step child of diseases. Heart Attacks, everyone knows them, yeah I probably had a hand in it. Sometimes, I feel bad for the people I "infect", so I do things to let them know I am here. Maybe you lose your sight, or even your foot. How about kidney failure. Seems like this world just doesn't know much about me. I laugh when people say, "oh you can't eat sugar then". What! Seriously people, I destroy your pancreas( heck if you are my cousin by the same name, you attack your own beta cells), I make your insulin useless, I can make your kidneys fail, your liver overload with glucose, your toes tingle, your vision blur, your teeth rot, your mood swing. I can keep you obese, maybe claim your toe or even your leg. Don't forget about a stroke, I can bring that on or how about a heart attack. And if you try to treat me, you can over do it and I can make you sick, cold sweat, and drop your glucose low, dangerously low. Or if you want to play the " I don't have you" game, I can run rampant in your body and rise your blood sugar and even put you in a coma. YES I can do all that and yet to this day, I still here people say " oh you JUST have diabetes, you take a shot and don't eat sugar".... Pfft, if only it was that easy to control me or get rid of me. So until people start to listen to the signs there body is telling them, I am here to stay. I may be quiet and not many notice me until I have turn their life upside down.... Hello, my name is Diabetes....and I've been her for a while...

Thursday, June 10, 2010

Addison's disease and Cushing's syndrome

I wanted to educate you on these two diseases. I think it is just as important that you know about these two autoimmune disorders as it is diabetes.

First I want to introduce you to Cushing's syndrome. Cushing's syndrome is an autoimmune disorder just like diabetes. This disorder effects the endocrine system. View picture to see what your endocrine system includes.


















Inside your endocine system are glands that produce hormones. Your Adrenal glad which is the small gland that sits on top on your kidneys produces a number of hormones including cortisol. Cortisol helps regulate your blood pressure and keeps your cardiovascular system in order. It also helps your body respond to stress and it helps the way your body metabolizes protein, carbohydrates and fats in your diet. When your body has to much cortisol is typically develops Cushing's syndrome.

Your body can be over producing cortisol. If it is, it is usually due to one of these three things:
1. A pituitary gland tumor
2.An ectopic ACTH-secreting tumor
3.A primary adrenal glad disease

Symptoms include:
Excess weight gain usually around the mid section and back
Fatigue
Muscle weakness
Rounding of the face
Facial flushing
Pink or purple stretch marks
Darkening on the skin in certain areas like the knees and elbows
Thin and fragile skin
Bruising and cuts that take a really long time to heal
Headache
Bone loss
The list goes on and on...

Now I'm not saying if you have a headache you have Cushing's syndrom but I would say that if you have two or three of these symptoms you may want to be tested.

Next I want to tell you about Addison's disease. Addison's disease develops when the adrenal glands can no longer produce cortisol and aldosterone. The hormone aldosterone helps your body hold on to the salt that it needs, and keeps your blood pressure steady. Your brain believe it or not plays a very important role with Addison's disease. The brain’s hypothalamus and the pituitary gland control the adrenal glands, which in turn make cortisol. The hypothalamus tells your pituitary gland to make a hormone called ACTH. This hormone then goes and tells your adrenal glands to make cortisol. When your adrenal gland can not make enough cortisol, you then have Addison's disease. Sounds complicated right? I mean if your body would just work together and be one happy family we wouldn't have these kind of problems in the world!

So what causes Addison's disease? Addison's disease usually occurs when your body's immune system starts to attack your adrenal glands and kills off the part of the gland that makes the hormones. It can also be caused from trauma to the glands from childbirth, tumors, or cancer.

People can get Addison's disease at any age. When it is caused by the immune system killing off the glands the disease is more common in women. Not fair right?

Like Cushing's syndrom Addison's disease has a list of symptoms. They include:
Fatigue
Weakness
Losing weight without trying
Loss of appetite
Feeling lightheaded
Feeling sick to your stomach and sometimes vomiting
Craving salt
And if you have diabetes, you may have low blood sugar more often then normal and it may be more severe than normal

The thing with Addison's disease is that your body can actually go into an Addison's disease crisis. When your body experiences this it is usually accompanied by severe vomiting, sudden pain in the belly, lower back and sometimes legs, a high fever, feeling restless, confused, or fearful, and having trouble staying awake.

Call your doctor right away if you have any of these symptoms because you will need medical attention immediately. You can actually die from shock because your body can not produce cortisol and in return your blood pressure goes way too low.

Both Addison's disease and Cushing's syndrom is a life long disease that will need life long treatment. Luckily though with proper medication and special care from your doctor you can live a long life. This is just a little bit of information on both diseases and if you have any questions please email me and I can go into more detail about the two. There is also a lot of useful information on the web but you have to be careful with some of the stuff you read because a lot of it can be misleading.

These two diseases are pretty rare and you may or may not know someone with one of them. Either way it's good to know how to spot the two in case you are ever in a situation where you can save yourself or someone else. Like always, thank you for letting me share this information with you. I will keep you all updated on my results and I pray that I will hear something back on Monday. I know I am in God's hands and I lay all my fears upon him tonight as I write this.

Happy weekend everyone!
Kimberlee