Saturday, August 8, 2009

Our Diabetes Story...

We have all seen these – notes about getting to know each other, answering weird or spontaneous questions. Well I decided to write one about diabetes and share it will all my JDRF, CWD and other friends with some connection to Type 1 diabetes.
You know the drill, copy the instructions and questions, past them in your own note, read my answers then delete my answers and answer the questions yourself. Then tag other friends to do the same - don't forget to tag me so I can read your story.

1.When were you or your child diagnosed with Type 1?

July 22, 2008; a date that is as indelibly stamped on my psyche as my own birthday. It divides our lives into two distinct parts...pre- and post-diabetes.

2.What symptoms did you notice prior to diagnosis?

*Maya was producing such immense quantities of urine that I was scouring the internet trying to find bigger, stronger diapers. No diaper on the market held up for more than a couple of hours. Because of the huge quantities of urine, she refused to use the toilet and wanted to use diapers round the clock. It was easy not to regard this as a symptom because she was 3 years old, a big girl, and although I thought she should have been "diaper free" by then, she was so adamant that I let it ride, assuming she would go back to panties when she was ready. Also, it was HOT summertime in Texas, so she was drinking lots of water.
*She was drinking CRAZY amounts of water. We all kind of joked about it and thought it was good for her. I carried water EVERYWHERE we went because she got very upset if there was none immediately available.
*She was constantly hungry. And I DO mean constantly. I thought she must be going through a growth spurt.
*She started behaving SO badly that it was putting a strain on my whole family. I almost didn't recognize her as my sweet Maya.

3.How long did you notice symptoms before going to the doctor?

Months. I really have no idea. The symptoms started so subtly and none of them on their own mean anything in a toddler; they were easily justified.

4.Who diagnosed you or your child?

One morning out of the blue I sat up in bed, in a panic, and thought, "Oh my God, Maya has diabetes. I have to take her to the doctor NOW." In retrospect, however, nothing is out of the blue. Months before, I had gone with my husband to see a natural health practitioner about something he was going through. She mentioned, by chance, that some holistic health professionals believe diabetes is caused by a parasite in the pancreas; get rid of the parasite, cure diabetes. I was so enthralled by this random comment, that I started researching on the internet, and literally read everything I could find on the subject. Somewhere in that reading, I must have read about the symptoms of diabetes. The universe works in mysterious ways...

5.Did you try to explain away (rationalize) the symptoms prior to going to the doctor?

Potty troubles? She's only 3. Drinking gallons of water? It's 100 degrees outside. Hungry? She's a growing girl. Bad behavior? She's tired; or, she'll grow out of it.

6.Who was with you at diagnosis?

Just Maya and I.

7.Who was the first person you called after diagnosis?

My husband was in New York on business and I didn't want to worry him until I had all the facts. I had called my sister earlier in the day and she knew I was at the pediatricians office, so I called her as soon as the doctor walked out of the room.

8.Where did you go immediately following diagnosis?

The doctor said to go STRAIGHT to the hospital; I went home instead. I justified it by saying I had to get our things together since I didn't know how long we would be in the hospital. The truth is, I don't think at that point I understood the gravity of the situation and I really just wanted to be in my home for a little while. When we got to the hospital, they had been expecting us for two hours. (As Christina said in her diabetes story, no judgement, please.)

9.How long were you in the emergency room after diagnosis?

Our pediatrician had called ahead and they were expecting us, so after filling out admissions paperwork, we skipped triage, but still had to place her IV and draw blood before going up to our room. That took a couple of hours because Maya was tired, cranky and totally uncooperative.

10.How long was your stay at the hospital?

Two nights. We left after dinner on the third day, feeling totally unprepared, but not wanting to be away from Lucca any longer, since Ricardo was still in New York.

11.Who stayed with your child or you at the hospital at night?

I stayed with her the whole time.

12.Who or what do you remember most from the hospital visit?

They were so great with Maya, and let her wear her own pajamas and clothes while we were there, which was a real issue for her. Right around the corner from our room was an awesome playroom with foosball, air hockey, great art supplies, etc. We spent every spare moment in there. I remember her most standing at the little easel gravely concentrated, paintbrush in hand. The weird part was, she looked fine, in her street clothes, and after the initial trauma of tests and IV insertion the first night, she really had a pretty good time, considering where we were. For weeks after we left the hospital, she asked to go back to that playroom.

13.Did you have any overwhelming spiritual moments regarding diagnosis?

At Dell Children's Hospital you are surrounded by children with every dreadful disease imaginable. It was impossible for me NOT to contemplate the fact that some of those children, who looked TERRIBLY ill, might not be leaving the hospital for a very long time, if ever. I was, and am, SO grateful that our challenge is diabetes, rather than one of the other options.

14.After leaving the hospital for the first time what do you remember thinking while driving?

I remember being very calm. It was like I was watching myself from above, and thinking that I was doing everything in slow motion. It felt like a dream sequence in a movie, and strangely, I remember the drive home and all of my thoughts on the way home, in great detail.

15.Do you remember the song playing on the radio the first time you left the hospital either to collect things from home or after checking out with your child?

The radio wasn't on.

16.Where was the first place you went after checking out of the hospital?


17.Did any family or friends come to stay with you after diagnosis?

She didn't stay with us, but I don't know how I would have gotten through the first weeks without my sister. She stayed with my son while we were at the hospital, visited, and kept us company. Back at home, she helped me sort out all of the diabetes supplies and samples we had come home from the hospital with. She patiently listened as I endlessly babbled endlessly over the phone about everything diabetes, helped me calculate insulin dosages, and dispensed second opinions when I was hesitant to act on my own. I was also very fortunate to have my cousins from Brazil, first Juliana, then Pamela, stay with us for months at a time while I tried to pull myself together. After teaching them each the basics, their presence allowed me blocks of time so that I could work out, have lunch with my sister, or go to a movie with my husband. They were both excellent sounding boards for my endless diabetes questions, as well.

18.How long after diagnosis did your child return to school?

Maya was in a preschool with no nurse and a terrible track record for hanging on to their teachers. I had no faith in their ability to take care of her under these new circumstances. After being at home for over a month, I spoke with the headmistress, intending to withdraw Maya. She convinced me to give them a try, with a new teacher she had hired who was supposed to be permanent. I had training sessions with the teachers and headmistress, and began to trust them enough to at least check her blood sugar and call me if she was showing symptoms. Today, thirteen months after diagnosis, I still return to school for mid morning snack, lunchtime, and afternoon snack because it does not feel right to entrust them with insulin injections and carb counting. Later this month she will be starting pre-k at a new school with a registered nurse on staff. We are BOTH very excited for this change!

19.What was the first food outside the hospital that you had to count carbs for?

Goldfish. 45 goldfish = 15 carbs

20.Have you had any mishaps with medical equipment or medications?

For months, Maya ran and hid every time it was time for insulin. While chasing, cajoling, or struggling with her, I stuck myself many times, narrowly missing my eyes on several occasions, before figuring out I needed to re-cap the pen needle after priming it, even if she is sitting right beside me. You just never know what's going to happen. Why did no one tell me that at the hospital?

21.What was the funniest thing you or your child has said in relation to diabetes management?

For a while, Maya had this thing about putting little bits of (clean!) toilet paper or tissue in her mouth. One day, totally frustrated, I told her very sternly for the 100th time that she is NOT to eat toilet. She looked very chastised and asked, "Why can't I eat toilet paper, Mommy? Does it have too many carbs?"

22.Has diabetes limited you or your child in anything?

Holiday parties seem to revolve around food, even at school. For one recent celebration at Maya's school, I noticed the incomplete parent sign-up sheet already had cupcakes, cookies, chips and juice. Whenever possible I let her participate in all of the activities and pick her up before they start setting up the snacks - it's just too much. I take my food scale to events where I know she will be over indulging in carbs so that I can bolus her as accurately as possible. Besides that, she does everything any four year old would do: jumps on the trampoline; takes ballet lessons, Sportball class and swimming lessons. She will be starting soccer in the fall. The catch is, I have to keep a close eye on her and check her glucose level during these activities for highs and lows. I'm hoping that she will be on an insulin pump someday soon, to facilitate sports activities and allow her more freedom, which I'm sure she will soon be wanting for play dates, etc.

23.How many people do you think you have educated about Type 1 diabetes?

Lots. I tell anyone who expresses an interest in Maya's story about diabetes symptoms, and the differences between Type 1 and Type 2. Last winter I was checking Maya's blood sugar during Sportball and noticed the nanny of one of the other kids paying very close attention. Once Maya was back on the sport court, the girl asked me what I'd been doing. She was very inquisitive and I ended up telling her pretty much everything I knew at that point. A week or so later, armed with nothing but my first name and Maya's first name, she tracked down my home phone number and called to thank me. With the information I'd given her, she had diagnosed her mother's diabetes, and helped to save her life.

24.How has having Type 1 or being a parent of a child with Type 1 changed you?

I have become a diabetes-related research junky. I read every book, article, piece of research I can find about diabetes. I've read relevant pieces in the fields of nutrition, nutrigenomics, holistic medicine, genetics, western medicine, Chinese medicine, Ayurvedic medicine, and scientific research from the US and abroad. I've made changes in my own diet that I had pondered for years but didn't have the courage to make, in the hopes that it will lead me to better health for Maya and the rest of my family. Yoga, which I've always loved, has become a priority in my life because I've realized that I can't take care of Maya if I'm not taking care of myself. I'm hoping that I can teach my children to live their best, healthiest lives by example. I've switched household cleaners, soaps, and laundry detergents, for chemical free alternatives. I'm in the process of removing many of the plastics we use in our home.

It has been only 13 months since Maya's diagnosis and I have no idea where all of this is going. I do know that I feel like a mother with a mission; I'm just not sure exactly what the mission is yet.