The cure for Diabetes-Overwhelmus

The other day the Diabetes Research Institute asked the question on their Twitter feed, who/what helps you get through the hurdles that you face when dealing with diabetes?  This question is very similar to the theme of the Diabetes Advocacy cover page on both Facebookand Google+–finding support amid the stress.
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When living with diabetes, we have all had those days.  The days when we don’t want to get out of bed. The days that we feel diabetes has won and we just cannot be bothered to fight any more.  The days when you just want to cry and cry and cry.  The days when you are certain that you just don’t have it in you any more. You are done.
If our child has diabetes, we may take over care for a day to let them just tune out for a short period of time.  When it happens and you are the parent or an adult, what do you do?
In my post on the three tips for parents of the newly diagnosed, I give one option to decompress…cry in the shower.  Let the water pour over you. Scream and let the tears flow.  No one will see your pain but you will be able to watch it flow out of you and hopefully will feel stronger and more refreshed when you emerge.
It is also important to have outside support networks though.  Support groups–online or in real life can offer a huge relief.  They are made up of people who understand your world. They live there and have experienced many of the same feelings that you have.  From these groups, we often find a few people that we “click” with and those individuals often become an even stronger source of support for us.
I was once warned that spending too much time with these people who get it could lead me into depression. It was not a good thing, this person told me, for people to sit around discussing the burdens in their life. I told this person how wrong he was.  I had a wonderful group of women that I connected with out of a support group.  We enjoyed regular “therapy” sessions that included dinner, drinks, and talk about diabetes, children, and our lives. Sitting with people who understood 3am lows and carb counting errors at school was exceptionally therapeutic.  We shared stories of life…and our lives happened to also include diabetes.  The connection was a true gift.
I have also been lucky to find this same connection through the internet.  Years ago…about 13 years ago to be precise, I stumbled across something called the Children with DiabetesParents Mailing list. My first email to this list asked how to get my son to eat. He was 3 years old by this time and I had been fighting alone for almost a year.  I was at my wit’s end. With that one email came friendships that have grown and lasted to this day.  I “met” people who had been where I was and could offer guidance on how to make it through. The best part for me is that they did not always coddle me.  They did not always say, “Poor Barb”. Occasionally they said, “Now that you are done whining, pick yourself up and get back to it! Living under a rock is not allowed.  You have to join us but we will be here to lean on while you move forward.”  Sometimes a well-meaning kick can be the best therapy.
Today, the Diabetes Online Community has grown to reach Facebook, Twitter and many other social media outlets.  Diabetes conferences and annual get-togethers are more common and eagerly anticipated by everyone involved.
Over the years diabetes has brought me many amazing friends and acquaintances but first I had to let them in. I had to ask for help…and when I did I was given the greatest gift of all. I was given a family that I never knew I had. A family that was united by tragedy but grew from understanding.
If you are struggling to deal with a diabetes diagnosis of yourself or your loved one, ask for help! Find local support groups through your hospital or local diabetes organization. Go online and search out the DOC on Facebook or Twitter.  Follow blogs like this one, share and engage yourself.  There are also many great diabetes coaches available to help you.  There are coaches and nurses online that will help with diet, exercise and making readings a bit more understood.  There are also people like me who will help you to wade through the day-to-day and find your footing with the emotional aspects of the disease.  The first step is to ask for help–seek answers and support from friends, family, and outside networks.  It truly is the cure for Diabetes-overwhelm-us.

Finding your Diabetes Balance

November is coming up and once again we are facing Diabetes Awareness Month.  I once asked a person with diabetes what they do in November and they looked at me rather strangely.  I was told that every month is Diabetes Awareness month in their world! So very true!! 

Despite that, I still try to give an extra push to politicians and do some added awareness “stuff” during the month.  The month is only a few days away and while there are many great ideas floating in my head, including how to make use the US JDRF’s Diabetes for a Day campaign, I have nothing concrete planned yet. 

I have however come up with something that I am hoping will help some people who are living with diabetes–be it parents or people who struggle with the disease. “Finding your Diabetes Balance” involves four intense diabetes coaching sessions offered by me during the month of November for those who feel overwhelmed by the disease.  There will be no further commitment required besides once a week for the month of November but the sessions will be intense and require your full effort. 

We will begin with looking at how diabetes has impacted various aspects of your life.  We will work together to figure out where it is hurting you the most and allow you to dream about where you would ideally like things to be in the near future.  You will then be given some homework to prepare for the second week’s session.

In week two we will create an action plan.  We will see what has stopped you from reaching your goals in the past and look at the tools and resources you have to be a success this time around. 

By week three we are halfway there!  At this point you will be given an affirmation to help you relearn old habits and provide you with the encouragement to go forward.  Together we will discuss changing your perspective to allow new and more positive thoughts to become part of your frame of reference. 

For our final session, we will create a 90 day plan for you.  You will now have a clear idea of how to move forward and we will work to see that you can succeed.* 

This will bring you into December with clear goals and ready to tackle the holiday season and the new year with renewed enthusiasm! Better still, for the month of November, and for people who have diabetes living with them only, these sessions will be offered at four sessions for the price of three! So you will be able to begin to get things on track and save money for the holidays at the same time! 

Remember that you do not need to go to an office or leave the comfort of your own home for coaching sessions.  They can be done via telephone or through Skype with the same effectiveness. If you are interested in this offer or know someone else who could benefit, please contact me or pass the information along! 

*Please note that Life Coaching sessions usually take place over the course of three months.  This is a brief guide to help you move forward. Should you wish to continue with my services beyond this intense one month introduction, continued pricing will be discussed at that time. 

Confessions of a Depressed D-Momma

This post was written earlier this year and understood by many.  Things have improved for the most part but diabetes and depression seem to go together far too often…

Confessions of a D-Momma

At the beginning of the year I posted about people living with diabetes, depression and/or burnout and addiction treatment online.  As parents, we ache for our children going through this each day and do our best to relieve some of their burden. Many parents go through a depression or period of mourning at diagnosis but I wonder how many feel that they may have developed depression in part because of diabetes moving into their homes?

When my son was diagnosed, it took me months before I sat and cried.  Initially I was so happy that he was alive that I didn’t think beyond that.  As he grew stronger, my focus was on learning and the fear of “what if”.  After months of testing and injecting, it hit me one night…I would never make him better. I would continue this routine until he would do it himself but he would not be cured. I sat alone in the dark and cried.

I moved on after that. I took control where I could because diabetes had left other parts of our lives so out of control. I found an amazing online support group.  I met some local people who became friends.  They understood my life and it made me feel less alone. I plowed through and worked on a variety of issues. I tackled the federal government and had them change the Disability Tax Credit, making it more fair for people with diabetes. I joined groups and committees. I advocated for change in a variety of areas. I organized diabetes walks, created a website and eventually began this blog.

Despite all of these great things and the encouragement of many, I always had a sense that I was not doing enough. I was inadequate. Change was slow.  Rewards were gifts to the heart.  Because most of what I did was volunteer, there was very little, if any, financial reward. Money is what makes the world go around and if you have no financial worth then what is your value? People would tell me that I should “get a life”.  I should “get over it”. I needed to “get a real job”.
In my heart, I know my value. I know what I have done as a parent, a mother and an advocate are very important. These comments still haunt me however. They still make me wonder.  I know the good things that I have done and continue to do. I see my son’s A1c when he is with me and I know that I am important to his health. I know the real value of that gift  When I begin to forget my worth, I often receive amazing emails and comments that truly light up my day. The value of these comments and the friendships I have made are well beyond a financial measure to me. 

And yet there are some days this knowledge is still not enough to see me through to the next day. The demons, the comments, the fears, the exhaustion–they are all there in the back of my head.  They lurk, telling me that I am not good enough–as a pancreas, as a parent, as a person.  The depression takes over. A black cloud hovers overhead.

Its a cloud that I cannot quite seem to easily escape. I look at myself and ask, what gives? I have a lot of blessings in my life. I have a lot to be thankful for. What is my problem?

I wish I knew. I have to fix it. I have seen many victories from many battles over the years–both personal and in the diabetes world. I should be happy with my successes. I should not be sad, depressed, blue, fearful or lack any self-worth. Perhaps its a shift that I need to make within me–to focus on the positive and push back the depression and feelings of inadequacy.   
Diabetes has taken over a lot of our lives. It has brought many changes and has brought me many blessings.  It has changed me. It has enhanced me.  It seems to have also brought a friend called depression but I won’t let it win any more than I will let diabetes win.

Diabetes Burnout

This morning I read a post about an adult who was suffering with depression and struggling to keep his diabetes in check. He knew what to do but just could not always bring himself to do it. The post really struck a chord with me.

As a parent of a teen with diabetes, I don’t have to remember to test before and after every meal or intensive activity.  I don’t have to remember to bolus for every meal. I don’t have to watch my pump for reminders of site changes, low cartridges and low insulin. I do not have to carry around constant reminders of my diabetes.

My son leaves the house and takes diabetes with him.  When he sleeps elsewhere, he is in charge of his own care.  I technically get a break.  I still think about it. I still count the carbs in a meal out of habit. I will still keep an eye on dates and ask about site changes. I will look at trends and deal with adjustments. I get tired and yet I am not the one living with diabetes 24/7. This scares me.

My son came home a few days ago after spending time with his father and other family members.  He didn’t change his site.  I avoided looking at his meter until later that evening. He had come home alive.  I did not want to ruin our reunion if things were not as they should be…and they weren’t.  When I finally scrolled through the meter that he used, I found times that he went over 12 hours without testing! The readings that were all “in range for the most part”, included a 28 (504). 

I was too tired to scream despite having just had five days away from diabetes. I was too tired to fight about it. I read through the readings aloud.  I asked him if he had used another meter because there were a LOT of missing readings.  He gave me his usual look of “of course I must have used another meter because I would never do something like totally neglect myself just because you were not there to remind me.” I knew otherwise. He knew I knew. I walked out of his room.

If I can get this tired, this frustrated, this worn out after 11+ years and its not my disease, how do those living with it handle it? How can we not expect depression? How can we not expect burnout? We can’t.

We can only offer help and be there to lean on.  My son has been able to bolus on his own for many years but there are still times when he hands me his pump after a meal.  He has been doing his own site changes since he was at least 11 or 12 but he still calls me in now and then to do them.  I am okay with those breaks. He knows what to do but some days its just nice to let someone else deal with it. I hope I can continue to do this for him…not forever but whenever we are together.  Hopefully it will help when he has to battle his own diabetes demons.

The “Lord help me!” Basal

As I mentioned before, it is technically trying to head into summer here.  Temperatures have been all over the map for the past few weeks and more than two hours of sunshine at any given time is considered a miracle.  Despite that fact, my son has been more active than ever.  He is out playing hockey with friends in the neighborhood, at school and in other people’s neighbourhoods.  We have had him mowing grass and helping with renovations to the backyard.  He has been a busy boy and his blood glucose levels are beginning to tell the tale.

We have gone from rarely seeing numbers in the two’s (36+) to having a new favorite number of 2.9 (52). He was 2.9 at 9pm.  He was 2.9 at 3:30am. He was 2.9 at 10:30am.  He was 2.9 at 2pm.  You get the idea. 

I obviously have some serious basal adjusting to do. In the meantime, I have been trying to ward off all of these lows.  We have an “active day” basal for things like sports days or times when we know he will be on the go for at least eight hours.  We also have a “LO” basal for those nights when I have been fighting lows and nothing seems to work.  Because we have rain, sunshine, drizzle, rain, and then sunshine, I have been using the “LO” basal.  It gives us two hours of reduced basal rather than dropping things for the entire day.

Today  after umpteen lows, juices, and retesting, I reminded him about the “LO” basal.  As I was talking to him, my brain thought, “To heck with a LO basal or an Active Day basal.  What we really need is a ‘Lord help me!’ basal.”  It would be the one you push when you are clean out of options.  You would implement that basal when you felt you have colossally failed as a pancreas and need divine intervention.  It was for those times when highs would not come down no matter what you do and lows refuse to respond to any of your treatments. 
With summer coming and my children away from my for much longer than I would like, a “Lord help me!” basal would also be perfect to keep him safe when he is away.  I would set it before he travels for any length of time and could truly rest while he was gone.  This is definitely the solution to many of my worries. Its not a cure but it would help reduce the rapid increase of grey “worry” hairs that I continue to get.  I mean, Divine assistance? That could be pretty powerful!
Alright pump companies, get on that phone and see if you can get a direct line to a higher
 power. Ask him/her to work with you on that new basal rates for frazzled parents and people with diabetes please.