Saturday, September 17, 2011

Penny & Grace's 30 - Invisible Illness Week

Invisible Illness Week - 30 Things Meme
There have been such great ones out there - Kerri, Abby, JonahMeri and Reyna for starters. It only felt right to join in. I hope others do too.

1. The illness I live with is: Type 1 Diabetes (ok, I live with it, but Grace LIVES WITH it)
2. I was diagnosed with it in the year: 1999. January 9, 2009 to be exact, at about 2 am in the morning.
3. But I had symptoms since: About two weeks before Grace's diagnosis - lots of water drinking, hunger like you wouldn't even believe and her size 5 jeans still fit her just before Christmas, something I was surprised at, but pushed to the back of my mind as a growth spurt. 
4. The biggest adjustment I've had to make is: For me, it's the constancy of it, the constant thought in the back of my mind of thinking about it 24/7/365. I often tell people this tale  - You know with autism, and my oldest daughter, I could take a day off from the therapies, the interventions, the never-ending of it all. I could plop her in front of the TV when she was 3 and literally take the day off. And I admit it, I did that a few times, cause I needed my sanity and I would have lost it otherwise. She was still gonna be autistic whether she watched a day of TV or not. I could take off. With diabetes, I cannot. There is no day off from it. 
For Grace, I would say the biggest adjustment is not being so carefree, as much as I promote it with her. Being able to just go with friends to the park, walk to the store, be invited to the pool - they all take advance warning most of the time and planning on both our parts. Some of the spontaneity is gone and if there is one thing my girl loves is spontaneity. I feel bad about that on many occasions.
5. Most people assume: That diabetes can be 'controlled' and that all I do is program insulin into her pump and voila! we have 'control.' Oh, if only it were that easy, right?!
6. The hardest part about mornings is: Not asking her to test the first thing in the morning. I stopped about a year ago, knowing that it shouldn't be the first thought in the morning. Ever since, I ask her about school, the day ahead, and our conversation doesn't revolve around diabetes. 
7. My favorite medical TV show is: Oh gosh, I don't watch that much TV at all, I can't even name a medical TV show! But I tell ya, put on an episode of Hoarders and I am all over it like white on rice. Makes me feel my house is clean and that I am organized.
8. A gadget I couldn't live without is: Her OmniPod, cause it's her pump and her meter. If the thing cleaned up after itself, I might have to marry it.
9. The hardest parts about nights are: Gee, let me think, this one is easy. It's the worry. The worry that she will have an nighttime low that I will not catch. The worry that she will not wake up. The 2 AM check each night reminds me of the constancy of this disease. And often, when I lay my head back down, I cannot go back to sleep. My mind starts working and worrying and listing and thinking of things to do. 
10. Each day I take 1 pills and 0 vitamins: OK, is it weird that I don't take any medicines at all, I hate to even take Advil if I have a headache? I think the body heals itself, I really do. So, no meds for me. And Grace doesn't take any vitamins or pills. Insulin is her drug of choice.
11. Regarding alternative treatments: None for Grace so far, in terms of 'treatment' for the D, other than a constant flow of insulin. I am a believer that healing and treatments come in all forms. I like to think I am open to other ways of helping her should she need it, and the help ay not always come through a medical professional. I learned this through my oldest, who was GFCF (gluten and casein free) for 5 years when she was diagnosed with autism at age 2. The medical professionals looked down on it, but I knew it worked. My girl stopped screaming and flapping and stimming and didn't have red cheeks for the first time in her life. Alternative treatments like the GFCF diet I believe saved her from a progressive slide down into severe autism. So, yes, I am a believer in help in all forms.
12. If I had to choose between an invisible illness or visible I would choose: Well, we have both here in this family - autism and diabetes - so I don't have to choose, so there!
13. Regarding work and career: I left my wonderful teaching job, a position I held for 21 years, when Grace was diagnosed in January 2009. It was hard, emotionally, mentally and financially to leave it. I knew we didn't have anyone else to care for her. I did what I had to do and I don't regret it. I do go through times where I am extremely sad I am not using all my skills in this world, but they are shortlived and they pass. Grace needs me here and now and that is what is important. But I tell ya ladies, I was one hell of a good teacher. Some day, I will head back.
14. People would be surprised to know: That I consider our lives and our family very normal. And that, I admit it, I have a food scale, but I don't use it. Now I have 'outted' myself. Crap.
15. The hardest thing to accept about my new reality has been: That Grace may have a shortened life because of diabetes. That she may have complications, as hard as we work at keeping her numbers in range, they may still come. I look at her and want her to be 'a healthy grandmother' is what I always tell her, but the reality is, she may be an older person with complications that diabetes bring, no matter what we do. That is pretty hard to accept when I think about it.
16. Something I never thought I could so with my illness that I did was: Go to DisneyWorld with a newly (2 months in) diagnosed child with Type 1 diabetes and a child with autism. We did, we had a grand time, memories were made and it made us stronger as a family. My husband and I looked at each other on the plane ride home and said 'We can do anything now.' 
17. The commercials about my illness: Just once I want to see a BG meter on TV read '374' or '42.' The numbers on the meters - the elusive 104, always just make me a little ticked off.
18. Something I really miss doing since I was diagnosed: Being able to just pick up my purse and head out the door with the kids, without the 10 lb bag of supplies that need to accompany us. Sometimes I feel like a pack mule.
19. It was really hard to have to give up: Sleep. Definitely 8-10 hours of sleep tonight, compared to a 4 hour chunk, then a 2 hour chunk.  
20. A new hobby I have taken up since my diagnosis is: Blogging and the DOC baby!
21. If I could have one day of feeling normal again I would: Go to the beach, all day, with no supplies other than a chair and a boogie board and not worry about what time we will eat or what time we will come back. Grace says she would eat anything she wanted to, all day long and not once tell me about it.
22. My illness has taught me: That Grace is the most resilient kid I know. Besides all of your kids, they are also the most resilient kids I know too. It has taught me once again, that each day we have on this wonderful earth is a blessed one. That I should never take it all for granted. It has taught me how much we are loved.
23. Want to know a secret? One thing people say that gets under my skin is: When other people ask me if I have the diabetes 'under control.' It's like trying to control the ocean, or trying to herd cats. No, frankly, I attempt 'control' but often, the diabetes runs me over.
24. But I love when people: Connect with Grace about her diabetes. When she meets other Type 1s and they flash pumps or compare meters, or just talk the D talk. Grace feels a connection and so do I. I think 'These are my people!'
25. My favorite motto, scripture, quote that gets me through tough times
"Tell me, what is it you plan to do with your one wild and precious life?"
~Mary Oliver
One go round on this sweet planet. One chance to raise these kids. One chance to do this diabetes right. One chance to go here, do this, do that. Spend it in despair or glory, time is gonna pass anyway. Choose joy and happiness each time. Choose to do something glorious with your life. When times get tough, I think of the choices I have and it always comes back to the choice to be happy.
26. When someone is diagnosed I'd like to tell them: That it will be alright, you will find your 'new normal' and believe it or not, you will laugh again, have good times with your kids and you will find support for caring for a child with diabetes. I wish someone had said these things to me while I was in the hospital. 
27. Something that has surprised me about living with an illness is: How many doctor appointments we go to and how, when someone truly understands your path, how joyous that can be. Whether it's a doctor who shows compassion and not judgement, to a nurse who takes the time to talk to Grace about something other than diabetes, I am always heartened that people understand we are more than our illness. I am grateful each and every time we meet a kindred soul who understands our journey may be hard.
28. The nicest thing someone did for me when I wasn't feeling well was: Grace would say that it was her friends who came to the hospital and brought her presents of arts and crafts to do. And that they came, but were too young to come up to her floor, so instead, their parents brought them to the parking lot, and there they stood, waving to Grace while she looked at the window of her floor. They came to see her, and see her they did. It brought tears to my eyes it was so very kind.
29. I'm involved with Invisible Illness Week because: We are here to learn from each other - whether it be about diabetes or life. I want to learn more about how people cope, so I can help Grace cope. I want to let others know we are out here, doing our best and living our lives. 
30. The fact that you read this list makes me feel: Honored. Thank you for taking the time to learn something about Grace and I. 

3 comments:

Hallie Addington said...

Thanks for this peek into your world!! I did not know you were a teacher!! We also couldn't live without the Omnipod. And Hoarders- that show is CrAzY!!! It's like watching a train wreck!!

Reyna said...

Chuckled at the "Hoarders" answer and the "white on rice" part. I love that saying.

AND...

I bet you were the best teacher ever Penny. I felt a ton of "me too" with the career stuff. I am struggling with not doing more right now.

Alexis said...

15 hit me hard as nails. Yesterday J ate pizza. All day. And not a pizza we have had before. He was low high low high. Then high ALL night. I felt like that did something to his future. Just because I said screw it and let him go nuts for just ONE day.

Sigh.

Great list. Blessed to know you.