Sunday, September 20, 2009

My Invisible Illness(es)

(this is for last week..I'm late, as usual)

1. The illness I live with is: type 1 diabetes, Bartter's Syndrome. One is decidedly more impactful then the other..but most chronic illnesses go hand-in-hand with diabetes.

2. I was diagnosed with it in the year: December 1998. September 2005.

3. But I had symptoms since: May 1998. There are before and after pictures,but I just remember the thirst starting around that time. The Bartters onset was a sudden thing, and up to last year, did not cause many problems.

4. The biggest adjustment I've had to make is:eating on a schedule, eating snacks. When you're a farm girl,you eat around work breaks, not the other way around. I hated being different. Getting on a pump changed that but sometimes you still gotta chase that insulin.

5. Most people assume:that I can do or be anything I want to. Which isn't strictly true..you can't fly a plane commercially or be in the military. The diabetes wouldn't stop from any of that,but the other illness says I've got to be in a civilized country where they can give an IV. And I can't simply have children,thanks to the D.(it's gotta be smack-dab perfect first)

6. The hardest part about mornings are: getting up. I'm not a morning person.(I require 2 cans of Diet Coke before I'm semi-awake)

7. My favorite medical TV show is: Greys Anatomy. 4 MORE DAYS TILL THE SEASON PREMIERE!!

8. A gadget I couldn't live without is: my ibaby.(iphone) If we're not talking medical devices. I LOVE MY IPHONE!!

9. The hardest part about nights are: Unwinding, I don't do that very well. I am a creature of the night. Muscles generally decide to do their cramping then too.

10. Each day I take: insulin via pump, 4 pills. I don't take much, its easily manageable.(in theory)

11. Regarding alternative treatments: Well, I'm not sure there are any in my situation but I'm all for whatever works(and has been shown to be safe)

12. If I had to choose between an invisible illness or visible I would choose: Visible.People can go ahead and get their discrimination out of the way early(instead of slapping it on you later on)

13. Regarding working and career: I don't let my diseases get in the way of what I want to do with my life.

14. People would be surprised to know: That it's hard. It really is NOT a matter of take a shot, you'll be fine in the morning.Sometimes it goes well, and sometimes it doesn't. And it's not your fault.

15. The hardest thing to accept about my new reality has been: that there may never be a cure for diabetes & things may get worse, instead of better. I'm not sure how well I'd cope with some horrible complication. And with the Bartter's, accepting has been hardest with the need for the IV sticks/infusions.Those still suck.

16. Something I never thought I could do with my illness that I did was: pass as a non-D. Haha.

17. The commercials about my illness: don't exist for one, and for the other don't accurately depict life with it.

18. Something I really miss doing since I was diagnosed is: eating half a bag of marshmallows, drinking slurpees, hiking a mountain without going low. Mostly food stuff.(but really, not that healthy anyway)

19. It was really hard to have to give up: Chocolate, and so I haven't.(and I don't believe in giving anything up food wise, but the limit quantity stuff has been really annoying). Spontaneity, with the Bartters.

20. A new hobby I have taken up since my diagnosis is: Writing poetry, blogging. It's how I cope.

21. If I could have one day of feeling normal again I would: Go to the beach, eat and drink to excess & not think about diabetes at all.

22. My illness has taught me: To make lemons out of lemonade. A cliche, I know,but you just have to make the best out of your illness because it's not going anywhere. To be able to help someone else always feels like your illness is not a totally bad thing.

23. One thing people say that gets under my skin is: that I'm not taking care of myself if I have a low, or a high.(in their presence) It's because I'm trying to take care of myself that I don't skulk off and save them having to see that I am human. I hate being judged (morally) for my disease.

24. But I love it when people: do things that show they are incorporating the inconveniences of diabetes into the day...and don't act like its a big deal.

25. My favorite motto, scripture, quote that gets me through tough times is:
"Into each life some rain must fall..some days must be dark and dreary."

26. When someone is diagnosed I'd like to tell them: We're all in this together,& you aren't alone. Don't give up on your dreams.

27. Something that has surprised me about living with an illness is: sometimes you can actually forget about it. And that's really nice,until reality comes whooshing back.

28. The nicest thing someone did for me when I wasn't feeling well was: got me a cold diet coke. Or a cold juice.(for the extremes in blood sugars)

29. I'm involved with Invisible Illness Week because:maybe someone out there will learn something,& treat another with the respect & support we all need.

30. The fact that you read this list makes me feel: thankful that you'd take five minutes out of your day to do so...and hopeful that you will pay it forward!

2 comments:

phonelady said...

wow you live in a beautifull part of the country . I just found your blog through other ppl . I love the fact that you have to work retail to get health insurance , that is a discussion left for another time . You sound like a great person and all of us d ppl have to stick together . Hope you will pardon the pun stick . smiles and hugs .

type1emt said...

Thanks,phonelady! I hope you visit/comment again sometime-it's nice to know who's out there reading this.