Friday, September 13, 2013

Invisible Illness Awareness Week 2013

Did you know that this week is Invisible Illness Week? I just found out myself. Click the link for more info or to participate yourself. Also, here is the link for the 30 Things About My Illness You May Not Know.

30 Things About My Invisible Illness You May Not Know

1.The illness I live with is: Type 1 Diabetes; Polycystic Ovarian Syndrome, Diabetes Insipidus and Hypo Thyroid

2. I was diagnosed with it in the year: T1D 2008; PCOS 2009; DI 2011 ; Hypo Thyroid 2013
3. But I had symptoms since: T1D symptoms started about a year before. Lost 30lbs in a years time, infections bruises and cuts that wouldn't heal. Then the last straw was peeing and drinking ALL the time. PCOS, that was 12 years and ten doctors before being diagnosed. Diabetes Insipudis was about 5 months before diagnosis. Hypo Thyroid was I’m really not sure how long I had symptoms, maybe 6-12 months before diagnosis and really didn't know it.

4. The biggest adjustment I've had to make is: T1D: injections, blood testing lots of times o day, doctor’s appointments, all the crap I have to carry around, carb counting, wearing a pump, no more fun summer dresses without being a royal pain in the hinney, being really in tune with my body for highs and lows, the list goes on and on and on…. Was I to just pick one adjustment per illness? My bad! PCOS, DI and Thyroid are just pills

5. Most people assume: That with T1 I just can’t eat sugar and it’s no big deal. But I can eat a lot of what I want, it’s just if I want to pay the consequences later on some things. Now that I’m on a pump, it acts just like a pancreas but I control it so really there are just a few things I may choose not to eat anymore at all or only at certain times because of the way those foods will affect me.

6. The hardest part about mornings are: Having to eat breakfast. I could skip, but I know I’ll be hungry once I get to work and I can’t just grab a donut or something from the vending machine. I do need to eat healthy because breakfast really does have a huge affect on the rest of my day and blood sugars.

7. My favorite medical TV show is: It was Mob Doctor, but I don’t think it’s on anymore.

8. A gadget I couldn't live without is: My blood glucose meter

9. The hardest part about nights are: Sometimes it’s remembering to check my BG before bed. If I end up remembering after I've brushed my teeth and then have to eat a snack to keep from going low at night. That’s just rotten!

10. Each day I take pills & vitamins. Both- 3 types of pills and 5 vitamins

11. Regarding alternative treatments I:  I think that they can be good, and I know that some people reading this will not agree with me…. Type 1 there is NO alternative to insulin. I don’t care who you are, if you are not using insulin you are not T1. I met a woman recently who insisted that her doctor diagnosed her with T1 and all she had to do was a no carb diet. Really? Get another doctor! PCOS, I’ve looked into alternatives and for me they don’t work. Only pills and the same with DI and Hypo Thyroid.

12. If I had to choose between an invisible illness or visible I would choose: Invisible for sure! As it is I hate it if a high or low cause me to receive attention. I don’t even like it sometimes when my husband starts when I’m low. Sometimes during a bad low I just need to be left alone, but kept an eye on, and given peace and quiet so I don’t flip out.

13. Regarding working and career: I have to work for health insurance. No independent business on my own, gotta work for a company. I've said it in past blogs, but it does kinda suck. I've had ideas of other things I've wanted to do recently, but I can’t branch out independently.

14. People would be surprised to know: I still think that despite my blogging no one other than another t1 can understand how much work this disease is! It’s tiring. Also, that despite a happy face that I try most of the time to slap on, how not good and unhealthy I feel most of the time. I've pretty much forgotten what feeling “normal” is like.

15. The hardest thing to accept about my new reality has been: Well, the pump is the newest reality, so I guess not wearing what I want all the time. I know that as women getting dressed can be multiple wardrobe changes but wearing a pump makes it SOOO much harder. I've really struggled with that this summer and have wanted to go out on a shopping spree. I've felt very frumpy, gross and unattractive in my clothing for most of the summer. I know this may seem vain, but when there are so many other things along with the disease to worry about it just heightens the small things as well on top of just adding feeling unattractive.

16. Something I never thought I could do with my illness that I did was: I can’t think of anything, maybe when I’ve had a baby that will be different.

17. The commercials about my illness: Hate them all, pretty much a bunch of crap info that is incorrect.

18. Something I really miss doing since I was diagnosed is: Eating ice cream when I want and 7Eleven slurpees and Icees from the movie theater.

19. It was really hard to have to give up: See #15 and #18

20. A new hobby I have taken up since my diagnosis is: Blogging, and reading other blogs on T1. Or maybe it’s more of an obsession.

21. If I could have one day of feeling normal again I would: I'd eat whatever I wanted, but not over eat so that I could go on a nice long walk or bike ride without worrying about a low or high or having to take my pump with me and then I'd eat a huge chocolaty ice cream something for dinner.  I'd also wear one of my favorite dresses all day no matter what I was doing that day since I haven't really for more than a couple of hours all summer cuz it's a pain. I'd also go swimming and it would be glorious because I wouldn't have to worry about checking my BG and bolusing insulin every hour during swim time. 

22. My illness has taught me: That I’m stronger that I ever thought I could be. There is no choice.

23. Want to know a secret? One thing people say that gets under my skin is: I don’t want to hear about the person you know that had a limb cut off or passed away because of diabetes. I don’t want to hear about the risks of pregnancy or how you know someone who’s child passed away or was born with  severe problems because of their gestational diabetes. I know these things, I don’t live under a rock, I’m a smart person that does lots of reading and research on this. I don’t want to hear the negative, I live with enough fear regarding this. Also, I don’t need people to monitor me when I eat. What I eat and when I eat is no one else’s business. Only one person has permission to monitor me and what and when I’m eating and that’s my husband and he does it when I’m low to keep me from eating everything inside the pantry and fridge. Oops, I was to choose one thing? Oh well…

24. But I love it when people: Actually listen when they have asked a question and they really care.

25. My favorite motto, scripture, quote that gets me through tough times is: If it doesn't kill you it will only make you stronger

26. When someone is diagnosed I’d like to tell them:  It’s really not the end of the world, but it’s okay to mourn the loss of your previous life as you know it. Cry, get mad, scream about it. It’s a hard sucky life, but you can do it, you are not alone and you are stronger than you realize. Even after a few years, it doesn't really get easier so it’ s okay to still have those times of feeling empty, lost and a frustrated. Personally, I have never had to seek therapy or use meds for depression, but a lot of people with T1 have and do and there is no shame in that. If you get to that point don’t be ashamed, seek help for it or if you have to go on meds, it’s okay and don’t let anyone make you feel bad about yourself for it. Also, don’t be afraid to ask for help and reach out for support. You need to, it’s essential to have at least 1 person that you trust and is in your corner cheering you on in this fight. So don’t be afraid to find someone to back you up.

27. Something that has surprised me about living with an illness is: How sensitive it has made me to others with an illness. We have no idea what someone else is going through if we are not dealing with it ourselves.

28. The nicest thing someone did for me when I wasn't feeling well was: Probably hubs, when he keeps an eye on me, takes over dinner prep when I’m low. Speaks up when we are out with people and I’m not feeling well and makes sure that I’m taken care of or takes steps to make sure there are no issues.

29. I’m involved with 
Invisible Illness Week because: I think it’s important for people to know about this and be educated on this disease.

30. The fact that you read this list makes me feel: Not alone, that you care, and want to try and understand what I have to go through on a daily basis. Thank you!

P.S . Due to operator error, for some reason sometimes when I start out writing my blog in a Word document and then paste it for some reason some of the paragraphs/words come up bold and I can't see to change it. Sorry for the annoyance! 

1 comment:

  1. Great list, I had no idea it was invisible illness week either or that you have so much to deal with besides diabetes! You are one strong woman! Also I totally agree with #23 and #26