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Living on My Own With Diabetes

By Karrie Hawbaker

Public Relations Manager

Posted:  10/25/2011 12:00 AM

Tags:

Today we hear from Nicole Purcell. She’s had type 1 diabetes for nearly 30 years and, just recently, begun living on her own without parents or roommates for the first time – a scary but exciting new journey . If you have any tips for Nicole or others in her situation, please share in the comments.

Oh, god, what if I die?

Not exactly a question that your average 37 year old asks themselves.  But there I was, asking that very question.

I had been, for a couple of months, living in a cute two bedroom apartment in Providence, Rhode Island with a roommate.  And she had, rather unceremoniously, told me she was leaving, to go back to Texas.  In eighteen hours.  The very next day.

So much running through my head in those moments, it was hard to get a handle.  How was I going to pay the rent and bills on my own?  How was I going to afford this?  How was the stress going to impact me – at work, in my personal life with other friends?  How were my bloodsugars going to react?  What if I went low in the middle of the night and there was no one there?  And that last one, “Oh, god, what if I die?” 

If you haven’t lived with diabetes, I’m pretty sure you’d think I was being melodramatic.  I’m pretty sure you’d think “well the chances are so slim.”  I’m pretty sure you’d think it could never happen. 

But it does.  And it has.  And being so connected to the diabetes community online, I know that it does.  And it has.

In the hours after my soon-to-be-ex-roommate made her announcement, every Facebook update about someone living on their own who had died from too high or too low bloodsugar, who had slipped away in their sleep, came back to me.  Every blog post about Dead in Bed Syndrome rung in my ears.  Every phone call from a friend to say “I’m so sorry to have to tell you this,” made its way frontward in my heart. 

I was scared.

But I realized, in fairly short order, that I was no more scared than I’d been each time I’d faced a first with diabetes.  You see, I’ve lived thirty years with this uninvited houseguest, and in all that time, I had never lived alone.  I had always lived with someone trusted - a parent, a partner, a friend.  I had, of course, slept once or twice alone in a hotel room or a tent, but I had never lived day-to-day without someone there to catch me if diabetes tripped me and I fell.  So this was a big first.  The prospect of night after night alone with diabetes lay in front of me and I wasn’t sure I could manage it. 

That’s when I remembered the first time I’d given an insulin injection, the first time I’d had a convulsion related to an insulin reaction and come out okay on the other side, the first time I’d ventured out on an outward bound adventure, the first time I used my Minimed insulin pump and the first time I’d traveled overseas on my own.  All of those firsts seemed pale in comparison, but I knew that when I’d been in the moment, facing those things, they’d loomed just as large and as big-hairy-monster-like as this next big first.    And I thought: I can do this.

I called my mom, my best friend, my boyfriend, and my doctor.  In that order.  We came up with a schedule.  My mother, best friend and boyfriend would alternate calling me each morning.  If I hadn’t answered by eight, someone would come to my house.  Keys were distributed to my “check-ins.”  
My doctor helped me to look at my overnight doses and we planned to run my sugars slightly elevated overnight for at least the first stressful weeks, to avoid a catastrophic low.  I’d increase my testing from eight to ten or twelve times a day.  I’d get back to logging and examining my doses closely.  The fridge would stay stocked with juice (no Oops! No juice!), my nightstand would make a nice home for cake frosting, juice boxes, and glucose tabs in an easy-to-open satchel.   My boyfriend would stay with me two or three nights a week, sometimes more. 

I took a deep breath as my roommate packed her things and flew to Texas.  And I took steps toward another first.   Feeling fortunate to have a support system, and comforted knowing that the people I loved were there to help. 

Those first weeks were not easy.  I experienced two overnight lows that were incredibly frightening.  One night, I awoke, soaked in sweat and unable to remember where I was.  I managed, somehow, to find my phone, and dial my mother.  I was making no sense, she says, but she was able to communicate the basics to me “You need juice.  You need juice.  You need juice.  Nightstand.”  And she stayed on the phone with me as she texted my boyfriend, who was at my door in fifteen minutes.    By the time he arrived, I had gotten a juice box in but my sugar was still only 44 mg/dl. 

Since those first weeks and those first scary lows, things have smoothed out.  My doctor has been very helpful in looking at bloodsugars with me each week and making adjustments that keep me more stable overnight, I’ve adjusted my eating schedule and I’m having dinner a little earlier to avoid over-bolus disaster.    Nighttime exercise is almost always happening before the 8:00 pm hour, again to avoid overnight issues with lag-lows related to activity. 

I am extremely grateful to have my Minimed at my side in this venture.  Given the struggles I had with MDI therapy, I can’t imagine not being able to adjust my overnight basal rates or having to give full units of insulin versus tenths of a unit when eating or correcting a high bloodsugar.  I wish I could afford a Continuous Glucose Monitoring system, which would improve my control even more and take some of the scary out of the late nights I’m spending alone. But even with my health insurance, my out of pocket cost is high, making it difficult to purchase.  

And that’s OK, I have excellent tools to make this continued journey on my own easier and more comfortable.  More importantly, I have the support of a loving and engaged family and friends and a medical team that treats me as a star-player, but still supports my efforts in a real and helpful way.  
In all, another first, tackled.   And I’m still here.

IMPORTANT SAFETY INFORMATION

- Medtronic Diabetes insulin infusion pumps, continuous glucose monitoring systems and associated components are limited to sale by or on the order of a physician and should only be used under the direction of a healthcare professional familiar with the risks associated with the use of these systems.
- Successful operation of the insulin infusion pumps and/or continuous glucose monitoring systems requires adequate vision and hearing to recognize alerts and alarms.

Medtronic Diabetes Insulin Infusion Pumps
- Insulin pump therapy is not recommended for individuals who are unable or unwilling to perform a minimum of four blood glucose tests per day.
- Insulin pumps use rapid-acting insulin. If your insulin delivery is interrupted for any reason, you must be prepared to replace the missed insulin immediately.

Medtronic Diabetes Continuous Glucose Monitoring (CGM) Systems
- The information provided by CGM systems is intended to supplement, not replace, blood glucose information obtained using a home glucose meter. A confirmatory fingerstick is required prior to treatment.
- Insertion of a glucose sensor may cause bleeding or irritation at the insertion site. Consult a physician immediately if you experience significant pain or if you suspect that the site is infected.

Please visit http://www.medtronicdiabetes.com/importantsafetyinformation for complete safety information.
 

Comments

Bethanne

Posted on Wed Oct 26 18:38:38 GMT 2011

Independence is so important. But it's good to have back ups. I've had diabetes since I was 12. When my husband and I agreed he was going to join the Army, I told my doctor, "I need the CGMS." After 22 years of diabetes, I wasn't a prime candidate as some doctors perceive. A diabetic should be out of control and NEED the extra help to get better in order to have the CGMS approved. It's a misconception, one I learned within a month of using the CGM. My sugars were so much more level. My A1c dropped from 6.0 to 5.4. I was thinking, holy mackeral, if I've come this far without any complications, I'm going to out live everyone with this thing. :D

Congratulations, Nicole!

Karrie

Posted on Thu Oct 27 17:57:00 GMT 2011

@Bethanne Thanks for sharing your story - we loved hearing it!

Sherri Richardson

Posted on Fri Oct 28 15:30:48 GMT 2011

My son is 18 and will be going to college next year.

I don't know how I am going to make it thru.............he has diabetes since he was 8 years old and I still get up and test him at night and before he showers.

I am so afraid I am going to lose him to this disease.

I pray we can make it through college.....maybe use some ideas you have stated.......another 1st to overcome.

Nicole Purcell

Posted on Fri Oct 28 20:30:03 GMT 2011

Hi, Bethanne - Thank you for sharing your story. I need to get a CGM system - and I'm reaching out once again to see if I can make it work. It's going to be a tough swing for me, but I've got to try. There are still nights when it's tough to sleep, particularly when I've been hounded by low bloodsugars... :S I am so insulin sensitive (I take about 28 units a day), that even tiny changes cause lots of highs and lows. It is nice to know that I am not alone. And I really appreciate your telling your story here.

Karrie

Posted on Sat Oct 29 01:07:00 GMT 2011

@Sherri Thank you for sharing! I can only imagine how scary the idea of your son going off to college must be. But the good news is there’s a great community of people with diabetes who have been there and back. A few months ago, a recent university grad named Lauren Gerenraich did a guest post for us with some tips for those heading off to college. You can check it out here http://www.loop-blog.com/Blog_Full_Post?id=a09C000000DJDgqIAH. And I’m sure you can also find D-parents online with wisdom to share. Hang in there!

Scott K. Johnson

Posted on Sat Oct 29 17:28:48 GMT 2011

Great post - so many people don't understand the fear that living with diabetes brings.


And what a great choice for a guest blogger - we love Nicole!

LaNita Harris

Posted on Sat Oct 29 19:45:19 GMT 2011

I used my CGM system for awhile and now I think I forgot how to use it . Do the sets go bad or get out of date? It seems like I heard you had to refrigerate them....I can't find this printed anywhere. I really want to get the benefits of the closer monitoring but I dislike having two sites on me and my hubby dislikes this too any suggestions?

Karrie

Posted on Tue Nov 01 16:15:48 GMT 2011

@LaNita Glad to hear you’re interested in CGM again. You can find the answer to your question about storage temperature (as well as other frequently asked questions about sensors and transmitters) here: http://www.medtronicdiabetes.net/support/sensors-transmitters-support. And, of course, the 24-Hour HelpLine is always available to help. You can reach them at 1-800-646-4633.

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