Wednesday, March 21, 2012

Hope through Education

I started blogging a few months ago as a way of communicating with my son and other pwd's. I wanted to share with him, and others what Type 1 has meant to me, how I manage my diet and my anonymity. It was cathartic. I feel thankful that my son has connected with the experience through my blog. Over the months since though, I have gradually weaned myself off entering other diabetes blog spots and have made very few entries of my own. When I read other blogs I get scared. Long term complications of Diabetes, the overwhelming demands and fears parent’s face when they have a child with diabetes leaves me feeling powerless.

The feeling of helplessness is dissipating though. I started a course for nurses’ (as well as Physicians, Dentist’s, Nutritionists and Nurse Practitioners). The course is called; Diabetes Management Certification and it is through The University of Southern Indiana. It is an online course for health care practitioners that wish to play a larger role in advocating for people with Diabetes in the health care setting. It has been amazing for me! I have discovered that there is a wealth of knowledge (and then some) pertaining to Diabetes . I am learning about drug therapy for both Type 1 and Type2 Diabetics, nutritional counseling, complications (short and long term) and intervention. I feel so empowered both personally and professionally. For the first time since I got this dreadful disease, I feel like I have a way out of the weak feeling, and will have an arsenal of tools to use with patient care in the Diabetes setting.

I know that there is no cure for Diabetes in sight and we are fighting an uphill battle for control over our blood sugar and our future… but I am welcoming all this new information, processing it and looking forward to working in an endocrinology setting with people who have Diabetes.

I also have a personal goal now, and that is to share my experience with low carbohydrate dieting with other fellow pwd’s in the healthcare setting. This may be the hard task; convincing the status quo that there are other ways to manage Diabetes. My A1c, and daily blood sugars inspire the challenge that is ahead of me.

All the best!

Friday, January 13, 2012

We belong to each other....

My mom has cancer. She has been fighting cancer for a year and a half.  We just learned that the pharmaceutical component of her health insurance plan is no longer going to cover a big part of the cost of the life sustaining drug that she needs to reduce tumor size and symptoms. The copay is now going to be 700$ a month. There is no generic and this drug is essential for her survival.  Like Insulin, it makes living possible, and although it is not perfect, the alternative is unthinkable.
In an effort to help her out, I told her simply not to worry about this latest challenge (what am I nuts, "don’t worry?")  and I would come up with a solution. I am working feverishly on this problem . There is a solution out there somewhere and I will find it.
This brings me to my post with the title; “Dare to reach your hand into the darkness, to pull another hand into the light”. In this post I write about what happens to families that simply can’t afford to pay for Insulin for their children with Diabetes. It is devastating. Heart- wrenching. I saw this outcome first hand with my mom and her cancer medication. I  saw the look on her face that said; “I am a burden to my family” … “my cancer is costing my family more than they can afford" .  I understood at that moment what families face when the cost of health care becomes overwhelming, and what the patient experiences when the reality hits them that the cost of their treatment is exorbitant.

The difference for us, is that I can and will find a solution for her.  If I lived in parts of the globe without the luxury of resources (i.e. the internet, a telephone, a fax machine, monetary stability etc.) I couldn’t possibly make the inroads that I have. I would experience the despair that I witness in the International Diabetes Federation video that I have posted on my hyperlink.  I know I will solve this for my mom. She is family. I love her. I will fight with every bit of power and know-how to get her the benefits she deserves. But, how can this not be possible everywhere?
This year my husband and I made a big commitment to The International Diabetes Federation. We decided that it’s really time to reach out a hand... far and wide. I love the work and compassion of IDF. I think they stay away from the proverbial “special interest groups” and put their money to work saving kids with Type 1 Diabetes. They are paying it forward.
What happens to my mom, and my family, will always take front and center for me.  I want them  to know that I would go to the end of the earth and back because they are worth it.  Every child, every person on the planet deserves the same. We are all connected. We belong to each other...

Saturday, December 31, 2011

Getting through the holidays on less than 30 carbs a day

With a flurry of family events, gatherings, and numerous holiday meals I was not looking forward to the task of managing a low carb diet. I DID it though! I managed to stick to my low carb ways;  less than 30 carbs a day (for nearly 3 years now!), and kept my blood sugar under 150 most of the time. When my blood sugar gets above 150 I worry... I obsess... and I am generally cranky. Maintaining the low carb diet helps to keep me sane and gives me a sense that I have control.

I realize that I have developed a whole different "relationship" with food. I would say, now,  "I eat to live", not " live to eat".  My endo worries about my weight, (I weigh 110 and have admittedly lost weight on the diet) my sustained ketogenic state, but he can't argue with the success of my A1C, my energy level or my lipids.

There are many aspects of this disease that scare me, leave me humbled, but for today I am going to enjoy the success of avoiding carbs, good numbers and the pleasure of watching the rest of my beautiful family  and friends indulge in food that I can only dream about!

Blesssings and good health to all in 2012. I carry you with me in the journey...

Thursday, December 8, 2011

Dare to reach your hand into the darkness… to pull another hand into the light

It helps me to cope with Type 1 when I can sink my teeth into an area of need that is greater than my own. That isn’t hard to find when you travel outside of the North American continent.
I keep finding my way back to sites that are representative of the people on the planet that don’t have the access to health care that we do. Never has it felt more personal or pressing to me than it does now. I feel a sense of urgency when I read that as few as 1% of children with Type 1 Diabetes born in sub-Saharan Africa live for 6 years. Does that astound you? It is unspeakable, not to mention unthinkable. But of course we really do have to think about this….. and then we have to act.
If you were a parent in Sub Saharan Africa you would be looking at the chance of your child dying from Type 1… or more devastating; hoping that they WILL die (see International Diabetes Federation hyperlink) so that the rest of the family can live. The cost of caring for a child with Diabetes can be over 50% of a family’s annual income, thus making the death of that child a means for which the rest of the children and family can live. No family anywhere should be in this predicament. It is every child’s birth right to live their life to his or her full potential, regardless of where they are born in this world. " No child should be a victim of geography".

I had a conversation with a friend about the burdens affecting those in the developing world. She said that she feels the needs here in the U.S. are so pressing, that to reach a hand to another part of the world seems almost like denying the issues that are right in front of us. 

Perhaps the message I have today is to reach out somewhere and make a difference. If it is in your own backyard or in a place far from your own home.... please, act. Consider donating to  the JDRF, International Diabetes Federation,  International Insulin Foundation, or wherever you think you are needed . Reach out a hand.

 (The title quote is by, Norman B. Rice) 

Monday, December 5, 2011

"Yeah, sure"

Did you ever see the movie, "The Bishop's Wife"? It's an 1940's movie, and they replay it every year around this time because it captures the magic of believing in the seemingly impossible. In the film, a bishop tries to get a new cathedral built. He prays for guidance and an angel (Carey Grant) arrives, but his guidance isn't about fundraising. Grant goes on to change the lives of the people in the church as well as the people in the community. Each one is transformed by his presence.

I use to say " yeah, sure" about angels, healers, or mystics. That was, until I started therapy again. I have been in therapy before, twice, and I always got alot out of it. My therapists have been thoughtful and insightful. But this time it has been different. Profoundly. I have been changed on nearly every front since the day I stepped into therapy. I don't mean that he (my therapist) gets out a wand, waves it and all is well. No; not at all. Rather inexplicably though, each week, the burdens that plagued me, have lifted.

 It started with my own fears about Diabetes. I couldn't sleep at night without experiencing terror. I would wake up at about 2 a.m. half awake and half asleep terrified of Diabetes. Afraid of every aspect of it. The blood sugars, the lows, the highs, the implications short term, long term, etc. Paralyzing. I would sweat, and my heart would pound. When I started therapy that all changed. Almost immediately the weight was lifted. I slept better. No more heart pounding at 2 a.m.

A huge ongoing fear has been the risk of my beloved son getting Type 1. I have been affected deeply by the worry that he, too, will become a Type 1. However, over the weeks that has improved. In recent days, my son has shown incredible strength and a discipline that makes him capable of managing anything that comes his way. He is one of the strongest people I know. While I dread the thought of Type 1 becoming his reality, I feel a sense of security that he, and we, will manage this no matter what.

My mom has Metastatic Cancer that nearly took her life a year and a half ago. In recent weeks it is like she has had a sort of  "remission". Not entirely of course, but enough so that we can just chat together without the dread of the next treatment or hospitalization rearing its ugly head. It has been a chance for the two of us to connect again before we have to say goodbye. Goodbye is inevitable. This therapy and this time isn't a cure-all. It is a chance to see things with clarity. To make memories and savor the moment.

And my husband, I adore him. He is dessert. I don't eat sweets, but I want to eat him.    I need him. He is my best friend and my soul mate. Calm has set in. He is at my side, and I treasure the warmth he brings me every day and night. The worries are still there, but they now provide me with a reminder to seize the moment.

There is no magic wand, and the ebb and flow of life will surely turn the tides on me again. But, this experience in therapy has left me believing in healers, mystics and angels who can help put you back together when you feel broken.
I am more prepared for the road ahead and less afraid of the dark. There is a light at the end of the tunnel...

Friday, December 2, 2011

Diabetes and Anonymity

Do you live your life as a Type 1 Diabetic anonymously? I do, almost exclusively. 
 I think it has to do with the idea of people judging me by this disease. I wonder to myself;  if they know I have Type 1, will they worry more about me? Will my moods  be attributed to my Type 1 diagnosis? Will my employer or future employer withhold work or insurance because I am a liability? Will people perceive my Diabetes as a weakness?  I have had this diagnosis for the better part of 3 years and only a few people in my life know.  For me, this is a luxury. 

 I feel more “normal” when I walk into work and no one knows. I feel more “normal” when I go out with friends and I eat my low carb diet and make a joke out of it. I usually say something like; “I hate bread that is why I am taking the meat out of this sandwich”. The great part is people believe me. I mean, who hates bread, pasta, rice, etc?! I could name a hundred examples of this over the past 3 years! I guess I thrive on a feeling of normalcy.
I don’t know about you, but I find that people love to pass judgement, and I for one don’t want to be a “victim” of their ignorance or pity. I have Type 1 and hopefully I will be stronger for it. I think I have more to prove since I was diagnosed with Type 1. I have a great desire to have strength in spirit, in spite of the fears and demand that the disease carries with it. I have chosen to embrace discipline and self control and ultimately manage this disease with a quiet fierceness!  
I am a nurse with years of experience and ironically I care for kids (among others) with Type 1.  I  can envision a day where I will share my Type 1 status . A day when (maybe) I will work as an intercultural nurse, or a Diabetes Educator helping out the children, and adults, who don’t have access to a health care system like ours.

This reminds me… take a moment and look at the utube video titled, "O is For Outrage" in my Hyperlink.  I happened to find this one on World Diabetes Day. It breaks your heart and it is a call to act....
Be well.    

Wednesday, November 30, 2011

What our Endocrinologist is not telling us...

I am convinced that we are being misinformed by our practitioners. I believe the information about low carbing is withheld because endocrinologists do not believe we can continue a diet with such a low carb intake for any lengthy period of time. My endocrinologist is just waiting for me to say that I want to resume my old diet (pre-diabetes).
 If someone said to you that you could substantially improve your blood sugars, lower your A1c, decrease your chance of experiencing a Hypo and this was all possible by lowering your carb intake to about 30 carbs a day…. Would you do it? I have. I have found a few sites that reinforce this way of living and treating Diabetes. Overall though, I am astounded by the lack of information out there for those of us who want alternatives to the classic ADA diet! We have to take back our health and we DO have the discipline to stick to a diet that preserves our health now and in the future.
 I hope you will share the journey with me and let me know how you are doing too…