This week is National Chronic Invisible Illness week and I've enjoyed reading this meme around the DOC. I love how everyone's answers are a little different, and a little bit the same.
1. The illness we live with is: My daughter's Type 1 Diabetes. And she's being closely monitored for another auto-immune condition that has to do with hormones and growing too fast... we don't even know the name of it yet.
2. My daughter was diagnosed with it in the year: 2008
3. But they had symptoms since: about two months before diagnoses... of course we only realized that in hindsight
4. The biggest adjustment I’ve had to make is: Living without sleep.
5. Most people assume: that Type I is just like Type II and I am simply an overly protective mom.
6. The hardest part about mornings are: Well, first of all, just because they are mornings... and I am not a morning person by any stretch of the imagination. But seriously, I wake up and immediately pray before my feet hit the floor that Rosie has been OK since whatever time I last checked her... that could be anywhere from an hour to four hours previously. Mornings scare me because that's when she has had both of her seizures... both times I discovered her having one when I went to wake her for the day. ::shudder::
7. My favorite medical TV show is: House. LOVE him. He says the things the rest of us wish we could!
8. A gadget I couldn’t live without is: Rosie's meter and insulin pump. (OK, I cheated, those are two seperate things but they work SO well together... they're her d-management combo!) Although these days her Dexcom is certainly ranking right up there.
9. The hardest part about nights are: Sleep, or lack thereof. I wake up three to six times a night to check on Rosie. Some nights, like last night, I'm also awakened by numerous alarms on her Dexcom. It's hard to get back to sleep, and then when I do, it seems like just moments before the next alarm.
10. Each day I take pills & vitamins: I don't take any daily, neither does Rosie. I have vitamins and supplements that I probably should be taking daily, but nothing prescribed.
11. Regarding alternative treatments I: am interested, but only in legitimate science. Please keep stories of how my child can be cured by algae or tea to yourself I do use some herbal medicines for myself, though.
12. If I had to choose between an invisible illness or visible I would choose: I guess invisible. Since I work in a nursing home and take residents out regularly, I know all too well the stares that some of them receive in public because of a disablity or illness. My daughter has the option to hide her diabetes most of the time if she prefers to do so.
13. Regarding working and career: I work part-time, and I have ever since my {preemie} children were born. I am blessed with an understanding boss who doesn't get upset when I call off on a bad d-day, and she allows me to keep my cell phone on me so the school can reach me during the day.
14. People would be surprised to know: that I wasn't always this outspoken, mama-bear kind of person. I used to be very shy. Dealing with doctors and nurses in the NICU with both of my preemie babies helped me break out of that, and by the time D came along, I had no qualms at all about really speaking up and obtaining the care/ help/ information we need.
15. The hardest thing to accept about my new reality has been: That I can't fix it. I think I've accepted that most of the time, but periodically I find myself emotional when something comes up again.
16. Something I never thought I could do with this illness that I did was: allow my daughter to attend slumber parties. I'm not saying it's been easy, but we've done it three times now, and each time has been a little easier than the first one.
17. The commercials about their illness: I'm stealing Meri's answer here: "Are usually geared towards 70 year old type 2 diabetics."
18. Something I really miss doing since they were diagnosed is: carefree, unplanned stops to grab a milkshake or another treat without having to stop and calculate if she can have it right now, how long since the last meal, how much insulin on board, how many carbs, etc.
19. It was really hard to have to give up: Not to sound like a broken record, but SLEEP. (I feel selfish just typing that.... of course I'll give up my sleep every day for the rest of my life to keep my child safe.) That's about the only thing I have truly given up... everything else was just modified a bit, and life moved on.
20. A new hobby I have taken up since their diagnosis is: The DOC! I blogged before diabetes, but since diagnosis I've turned to the DOC on Twitter, in forums, and most recently, by starting this blog.
21. If I could have one day of feeling normal again I would: Drop my daughter off at a slumber party and not even ask what she ate the next morning.... let alone come back three times during the night, train the adults in charge, and sit by the phone a nervous wreck.
22. My daughter's illness has taught me: That she is amazing, resilient, and strong. She handles the challenges that D throws her without skipping a beat. I think she was blessed with a personality that makes her able to do this.
23. Want to know a secret? One thing people say that gets under my skin is: Ohhhh.... the too-common statements that people make about how they don't their kid have candy so they won't get diabetes, or even worse, jokes/comments about how my kid must have eaten too much sugar and that's how she got diabetes. That grates on my very last nerve and I REALLY have to bite my tongue, because most of the time people truly are ignorant of the facts.
24. But I love it when people: Ask questions and really want to know the answers. It touches me when someone takes the time to learn about what we're dealing with.
25. My favorite motto, scripture, quote that gets me through tough times is: I have two:
1. The illness we live with is: My daughter's Type 1 Diabetes. And she's being closely monitored for another auto-immune condition that has to do with hormones and growing too fast... we don't even know the name of it yet.
2. My daughter was diagnosed with it in the year: 2008
3. But they had symptoms since: about two months before diagnoses... of course we only realized that in hindsight
4. The biggest adjustment I’ve had to make is: Living without sleep.
5. Most people assume: that Type I is just like Type II and I am simply an overly protective mom.
6. The hardest part about mornings are: Well, first of all, just because they are mornings... and I am not a morning person by any stretch of the imagination. But seriously, I wake up and immediately pray before my feet hit the floor that Rosie has been OK since whatever time I last checked her... that could be anywhere from an hour to four hours previously. Mornings scare me because that's when she has had both of her seizures... both times I discovered her having one when I went to wake her for the day. ::shudder::
7. My favorite medical TV show is: House. LOVE him. He says the things the rest of us wish we could!
8. A gadget I couldn’t live without is: Rosie's meter and insulin pump. (OK, I cheated, those are two seperate things but they work SO well together... they're her d-management combo!) Although these days her Dexcom is certainly ranking right up there.
9. The hardest part about nights are: Sleep, or lack thereof. I wake up three to six times a night to check on Rosie. Some nights, like last night, I'm also awakened by numerous alarms on her Dexcom. It's hard to get back to sleep, and then when I do, it seems like just moments before the next alarm.
10. Each day I take pills & vitamins: I don't take any daily, neither does Rosie. I have vitamins and supplements that I probably should be taking daily, but nothing prescribed.
11. Regarding alternative treatments I: am interested, but only in legitimate science. Please keep stories of how my child can be cured by algae or tea to yourself I do use some herbal medicines for myself, though.
12. If I had to choose between an invisible illness or visible I would choose: I guess invisible. Since I work in a nursing home and take residents out regularly, I know all too well the stares that some of them receive in public because of a disablity or illness. My daughter has the option to hide her diabetes most of the time if she prefers to do so.
13. Regarding working and career: I work part-time, and I have ever since my {preemie} children were born. I am blessed with an understanding boss who doesn't get upset when I call off on a bad d-day, and she allows me to keep my cell phone on me so the school can reach me during the day.
14. People would be surprised to know: that I wasn't always this outspoken, mama-bear kind of person. I used to be very shy. Dealing with doctors and nurses in the NICU with both of my preemie babies helped me break out of that, and by the time D came along, I had no qualms at all about really speaking up and obtaining the care/ help/ information we need.
15. The hardest thing to accept about my new reality has been: That I can't fix it. I think I've accepted that most of the time, but periodically I find myself emotional when something comes up again.
16. Something I never thought I could do with this illness that I did was: allow my daughter to attend slumber parties. I'm not saying it's been easy, but we've done it three times now, and each time has been a little easier than the first one.
17. The commercials about their illness: I'm stealing Meri's answer here: "Are usually geared towards 70 year old type 2 diabetics."
18. Something I really miss doing since they were diagnosed is: carefree, unplanned stops to grab a milkshake or another treat without having to stop and calculate if she can have it right now, how long since the last meal, how much insulin on board, how many carbs, etc.
19. It was really hard to have to give up: Not to sound like a broken record, but SLEEP. (I feel selfish just typing that.... of course I'll give up my sleep every day for the rest of my life to keep my child safe.) That's about the only thing I have truly given up... everything else was just modified a bit, and life moved on.
20. A new hobby I have taken up since their diagnosis is: The DOC! I blogged before diabetes, but since diagnosis I've turned to the DOC on Twitter, in forums, and most recently, by starting this blog.
21. If I could have one day of feeling normal again I would: Drop my daughter off at a slumber party and not even ask what she ate the next morning.... let alone come back three times during the night, train the adults in charge, and sit by the phone a nervous wreck.
22. My daughter's illness has taught me: That she is amazing, resilient, and strong. She handles the challenges that D throws her without skipping a beat. I think she was blessed with a personality that makes her able to do this.
23. Want to know a secret? One thing people say that gets under my skin is: Ohhhh.... the too-common statements that people make about how they don't their kid have candy so they won't get diabetes, or even worse, jokes/comments about how my kid must have eaten too much sugar and that's how she got diabetes. That grates on my very last nerve and I REALLY have to bite my tongue, because most of the time people truly are ignorant of the facts.
24. But I love it when people: Ask questions and really want to know the answers. It touches me when someone takes the time to learn about what we're dealing with.
25. My favorite motto, scripture, quote that gets me through tough times is: I have two:
- Plato's quote that you shouldn't judge people because everyone is fighting a {hidden} battle. I LOVE this quote, and I need reminded of it myself some days. I have no idea what makes the clerk at the gas station grumpy, but she just might be fighting an invisible illness, caring for a dying relative, struggling to pay bills, or a myriad of other invisible battles. I try to keep this in mind when I deal with difficult people.
- I firmly believe that everything in life happens for a reason and as it's meant to be (Ecclesiastes 3:1)... although I often find that God alone knows that reason. This belief grounds me in much of my life, including diabetes, though I won't claim to know or understand what the purpose could be. I do find the little things to be proof that there must be some sort of ultimate plan, though. For example: what are the chances that we would build a house directly across the street from a family whose child was diagnosed two years after Rosie? I believe that happened for a good reason, so that we can support each other.
27. Something that has surprised me about living with an illness is: The insensitive things people say... whether intentional or not. I've worked in health care for 16+ years, so I don't know why it still suprises me, but it does. I think I have a thinner skin with diabetes because it involves my child.
28. The nicest thing someone did for me when I wasn’t feeling well was: Take over d-care so I could sleep for hours on end.
29. I’m involved with Invisible Illness Week because: A bunch of my favorite d-bloggers did this meme: Meri did it,, Reyna did it , Kerri did it, , and now I am doing it.
30. The fact that you read this list makes me feel: Understood. There's nothing better than feeling like you are not alone in fighting your particular battles in life!
You give me hope for a sleepover for Joe. No one has asked yet...but I would be willing to go for it. Great 30.
ReplyDeleteLove it :)
ReplyDeleteGreat list!!!!
Same same on sleep!!!!!
Great post Amy! I had no idea about the Invisible Illness Awareness Week - I know we're still dealing with the scoliosis, hyper insulin, etc, while not the same as Type I it's still has it's own set of problems.
ReplyDelete