Invisible Illness Meme

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: migraines and back pain

2. I was diagnosed with it in the year: 2000 and 2009, respectively

3. But I had symptoms since:1986 and 1995, respectively

4. The biggest adjustment I’ve had to make is: doing less – less of everything, and resting more.

5. Most people assume: that migraines are just a bad headache; I think most have never heard of someone having migraines or headaches everyday. (You’re too young to have chronic pain!)

6. The hardest part about mornings are: the pain before I eat and take my breakfast pills.

7. My favorite medical TV show is: House. Not for the medical part of it, but for the humor.

8. A gadget I couldn’t live without is: ice packs and heating pads.

9. The hardest part about nights are: staying asleep.

10. Each day I take __ pills & vitamins. (No comments, please):  18. Many of those are the same pills repeated.

11. Regarding alternative treatments: Ihave tried many and all have failed. I feel alarm bells going off when alternative practitioners ‘know’ they can help me. This hasn’t been the case at all so far.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I can choose who to tell and who not to, and I can try to look and act as normal as possible. In some ways it seems that visible illnesses are given more credence and are more widely understood. But at some point you have to realize that whatever people think about me or my pain, they can go fly a kite, because I know my body and have to live with it.

13. Regarding working and career: I feel like my life has taken a huge detour — I planned to be a piano teacher after college, and have so far been unable to realize those dreams. It is very difficult to play and would be even more difficult to teach and listen to children playing.

14. People would be surprised to know: I’m not always happy and cheerful. I didn’t choose this life, and I’m just trying to make it through the best I can. Friends and acquaintances are always saying ‘You seem so cheerful, so happy. You never seem down and I forget that you’re in pain.’ It’s just not true. And thankfully my family and closest friends know this. They know I’m not Superwoman, and I”m not trying to be.

15. The hardest thing to accept about my new reality has been: sitting out and waiting and resting. I want to be doing, be in the middle of the action, listening to loud music…you get the idea.

16. Something I never thought I could do with my illness that I did was: …this was the hardest question. I feel like I haven’t turned a major corner yet. But recently, with my back pain, I was pleasantly surprised with how well my driving vacation (to Oregon and CA) went.

17. The commercials about my illness: are annoying and make me wish more real information was being spread, instead of ads for medications. It also makes migraines seem much simpler to treat than it is for some of us.

18. Something I really miss doing since I was diagnosed is: playing the piano for as long as I wanted.

19. It was really hard to have to give up: listening to music as loud as I wanted to. Also, chocolate.

20. A new hobby I have taken up since my diagnosis is: crocheting, making jewelry, and blogging!

21. If I could have one day of feeling normal again I would: play the piano, have a fun dinner with friends, clean, go out dancing and/or to a symphony concert.

22. My illness has taught me: doctors don’t always have the answers, sometimes answers take time, everyone is struggling with different issues — we just don’t always know it.

23. Want to know a secret? One thing people say that gets under my skin is: What do you do? It’s something I just need to ignore, but meeting new people, I hate this part of the process…I have to tell them I’m not going to school, I’m not working, I have these headaches and etc….it just changes the tone of the conversation, and they feel bad for me. So not what  I”m after.

24. But I love it when people: hug me. Talk to me about their lives and their loves. Even though I have not a lot going on, I do have some things going on, and I love to talk about books or movies.

25. My favorite motto, scripture, quote that gets me through tough times is: Phil. 4:13, I can do all things through Christ which strengtheneth me.

26. When someone is diagnosed I’d like to tell them: to treat yourself kindly, to watch out for rebound headaches, do research on your own and don’t just listen to what the doctors tell you, there is a lot of comfort to be found from online communities.

27. Something that has surprised me about living with an illness is:how quickly time seems to pass me by.

28. The nicest thing someone did for me when I wasn’t feeling well was: there have been many – times my mother or MIL scrubbed my tub, times family or friends from church brought me meals.

29. I’m involved with Invisible Illness Week because: too often it is assumed that if it can’t be seen it isn’t real, it’s made up or imagined.

30. The fact that you read this list makes me feel: hopeful for the future. I hope people will get a better idea of what it’s like to walk my path and maybe try to learn more about diseases they don’t know about when they encounter them.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

A meme from my MIL

I have so little news these days – just trying to ride out the headaches. I did make my appointment for the headache clinic in Chicago – for March 5th. I’m going all in one day again. It seems like traveling is really hard on my migraines (not surprising), and so getting it all over with in one day is better than having two miserable days in a row.  

I’m in emails with my doctor (@ the headache clinic) to find out whether we’ll stay at this higher level of Tegretol and Baclofen. I had some blood tests recently – so we shall see!

It is also worth mentioning that the phlebotomist who took my blood got it in ONE STICK. This is like a miracle. It was pleasant. Onto the meme!

Four, Four, Four, Four…

A) Four places that I go to over and over

Smith’s (grocery store), church, the library, and Sam’s Club (my pharmacy!)

Let me know in the comments if you join in!   

Happy Blogiversary to me!

That’s right, ladies and gentlemen — it’s been 3 years today that I’ve been blogging at The Sassy Lime!

It sure has been a fun ride – I’ve met so many great blog friends along the way. Thanks for joining me on this blogging adventure – hopefully there’ll be many years to come!

So this week is National Invisible Chronic Illness Awareness Week! a mouthful, right? Well, I’m excited. For me (and others with invisible illnesses), there are seminars and articles and guest bloggers! I’m looking forward to it – do check out the seminars, after they are over they will be posted to read as well!

For those who DON’T have an invisible illness – consider this: nearly 1 in 2 Americans have an Invisible Illness. And 96% of illnesses are invisible. so the chances that you know someone with an invisible chronic illness? Really, really good. We’re talking about diabetes, cancer, depression, back pain, migraines (hello!), chrohn’s, etc., etc. I could go on and on. There is a lot of information for you – the purpose of the week is to raise awareness about invisible chronic illnesses. So check it out – here is an article about ways to encourage friends or family members with invisible illnesses. Here is a great article about the paradox of looking good but feeling bad. And last but not least, here is a short article regarding one woman’s personal experience with invisible illness.  I hope you’ll take a couple of minutes to read and maybe learn something new!

I’ll be talking more this week about how invisible illness has affected my life, and am happy to answer questions if you’ve got ‘em.    The main website for National Invisible Chronic Illness Awareness Week is www.invisibleillness.com

do i actually blog here? or just share links?

ah well.

this is a great one, not to be missed. shannon over at Rocks in my Dryer has a series called ‘What I’d Like You to Know’ — and this entry is about Chronic Illness. Worthwhile for those who suffer from a chronic illness and for those who know anyone with a chronic illness.

do you guys remember my entry over at How to Cope with Pain earlier this month?

today and tomorrow, How to Cope with Pain is holding a vote (for prizes, even) on the favorite article! you have to leave a comment — go check it out, wouldja?

tales of tomatoes i have known…

well due to a auspicious comment left by my muum, i came to realize that my tiny orange tomatoes were actually ripe! what great news! the only thing is, their size left a little to be desired. when i say tiny….well, have a look for yourself:

luckily, they were delicious. also fortunate is the fact that i have a few more still on the plant – they are green, but soon will be ripe! and a little bigger.

then, just a few days later i bought some tomatoes at the store. i was cutting them up for some sauteed vegetables, when look who was looking back at me!?! this evil little grin –

reminded me of caryn’s happy bell pepper. er, that would be ‘The Placid Pepper of Eternal Happiness’. she’s a writer, after all. when she writes a blog entry, it sounds good!

tagged!

one of the blogs i’ve started reading (somewhat) recently, LibAnn at Not Much More Than This, has tagged me! i like to be tagged. makes me feel like i’m not all alone out here in the blogging world.
Here goes….

Finish These Five

Rules

Each player answers the questions themselves. At the end of the post the player then tags 5 people and posts their names, then goes to their blogs and leaves them a comment letting them know that they’ve been tagged and asking them to read your blog. Let the person who tagged you know when you’ve posted your answers.

The Five

Ten years ago… I was going into my senior year of high school (yes, really) and rarely had migraines. oh, how times have changed! I believe i was working full time over the summer at Toys’R'Us – my first job.

Five things on today’s “to do” list…

1. attend church.
2. appointment with bishop (like our pastor)
3. appointment with elder’s quorum presidency (can’t think of a good equivalent here)
4. maybe some unpacking?
5. choose a dessert to make tomorrow!

Snacks I enjoy… banana and peanut butter smoothie, ice cream, i LOVE chips and dip — so much so that i often have to *walk away* if they’re at a party…i can do some serious damage.

Things I would do if I was a millionaire… tithe 10% to my church, give a bunch to migraine research, invest a bunch, buy a house and land for my husband and i, probably in northern california, maybe a new car? and i’d buy my siblings and my husband’s siblings all houses as well.

Places I have lived… Ohio – Columbus, Athens, and Bryan; california (sacramento), utah – pgden, provo and SLC, pennsylvania.

I’m tagging…

Muum@ Muum’s Musings

Edge @ Mothering on the Edge

Gretchen @ Richard & Gretchen

Heather @ Magically Mama

Dorothy @ Inner Dorothy

check this out…

my article is up today on the How to Cope with Pain Blog! It’s 5 tips on how i handle my worst pain symptoms. let me know what you think over there!

Pain — has an Element of Blank — By Emily Dickinson

Pain — has an Element of Blank
It cannot recollect
When it begun — or if there were
A time when it was not –

It has no Future — but itself –
Its Infinite contain
Its Past — enlightened to perceive
New Periods — of Pain.

the nausea seems to have passed! thank goodness! it wasn’t taking it at night that helped, because unfortunately for me, the effexor is an extended release. so i was nauseous no matter when i took it. BUT my body slowly got used to it. and now i am much improved. if we could just do something about this pounding pain in my temple… 

the moving in is coming along, slowly but surely. i disappeared for a little while there — we were at a family reunion (spencer’s family) up in sundance. ooh, it is gorgeous up there! so pretty. did i take any pictures? no. but when my dear husband posts some, i’ll link to them for you. the reunion was good, but it was a little disconcerting to come back to an apartment full of boxes. so much work yet to do! today i did the first set of laundry and grocery shopping since we’ve been in the new place. seems crazy to be bringing more things INTO the house!

on a parting note, my husband posted this photoblog entry the other week — he calls it ‘Waiting’. love it! i promise i’m not angry, just bored. and i’m sure i didn’t realize he was taking my picture.