Sunday, September 13, 2009

Things you need to know....

I have posted in the past about my illnesses but I wanted to do it again to help bring attention to National Invisible Chronic Illness Awareness Week. So here is a list of questions off the NICIAW website......

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are: Sjogrens and Fibromyalgia

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: 2006....I was one of the lucky ones who didn't spend 5 or more years without a true diagnosis. My neurologist knew right away that I had Fibromyalgia and my PCP found the Sjogrens pretty quick too.

4. The biggest adjustment I’ve had to make is: Adjusting to the limitations my body has, and how to continue to get through the day while I am in pain. It is hard when you know that you have a lot of stuff that needs to be done and your body will only cooperate to do a few of those things.

5. Most people assume: I am just lazy.

6. The hardest part about mornings are: Moving. Seriously, between feeling like I haven't slept, stiffness and pain... just getting up and moving is HARD.

7. My favorite medical TV show is: I like all the blood and guts ER shows.

8. A gadget I couldn’t live without is: Cordless telephone. If I didn't have one I would miss most calls because most days I can't move that fast.

9. The hardest part about nights are: Nights always seem to be worse for me. I think it is because I push through so much during the day and when I finally stop to rest all that pain comes flooding at me.

10. Each day I take __ pills. (No comments, please) 13 pills (more than that if you count pain killers). Except on Saturdays when I take 20 (methotrexate is only taken one day a week).

11. Regarding alternative treatments I: Haven't tried any, I guess I don't know too much about them.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I hate my disease and how it limits me but I am also ashamed of it and I am glad most people have no idea what I am going through.

13. Regarding working and career: I used to have one, but not right now. There is no way I could function all day at a job. They would fire me for falling asleep at my desk or for taking too many days off.

14. People would be surprised to know: That things that seem small to them are huge to me. Like taking a shower, that drains my energy. So planning anything after a shower is not an option. I need to rest afterwards. The same goes for household chores. I can't do the dishes and turn around and run the sweeper. Nope...it just can't happen that way. AND another thing that might surprise people is That even some of my closest friends have no idea how sick I really am. I am just too ashamed to let them know.

15. The hardest thing to accept about my new reality has been: that this is PERMANENT. Forever is a long, long time to feel crappy and hurt like Hell.

16. Something I never thought I couldn't do with my illness that I did was: This is hard. I can't think of anything I have done that my diseases would have prevented. I guess I better get out there and start trying new stuff, right?

17. The commercials about my illness: Fibro has commercials and I hate them. It seems like it is the "new" thing to have.....which makes me think people assume I jumped on the commercial bandwagon. But I had it before those commercials came out. And Sjogrens doesn't have any commercials. But I would love to see one....and see if anyone pronounced it correctly.

18. Something I really miss doing since I was diagnosed is: Riding my bicycle. I finally got the bike I always wanted and then got sick. That depresses me.

19. It was really hard to have to give up: My independence. Well, it isn't completely gone but on bad days I need lots of help.

20. A new hobby I have taken up since my diagnosis is: Blogging!

21. If I could have one day of feeling normal again I would: Play and Run with my boys. I would do everything they asked and enjoy every second of having an able body to do it with.

22. My illness has taught me: To slow down. And that being with family and friends is what is important.

23. Want to know a secret? One thing people say that gets under my skin is: Are you really THAT bad??

24. But I love it when people: Accept me as I am, Sickness and all.

25. My favorite motto, scripture, quote that gets me through tough times is: But I will restore you to health and heal your wounds, declares the LORD. Jeremiah 30:17

26. When someone is diagnosed I’d like to tell them: Tell your doctor how your feeling, TRUTHFULLY. If your hurting, tell them. If you are tired, tell them . And if they wont listen, get new doctors.

27. Something that has surprised me about living with an illness is: How people judge you so harshly and don't believe you since you look ok. It is very frustrating. But I guess I can't complain too much since I spend most of my time hiding my illnesses. BUT those times when people have found out and dismisses it as nothing really upset me.

28. The nicest thing someone did for me when I wasn’t feeling well was: Say it was OK to cancel or change plans at the last minute. (thanks Amy! You are the BEST!!)

29. I’m involved with Invisible Illness Week because: I think more people need to know that just because someone looks OK on the outside, they may be suffering on the inside. Don't judge!

30. The fact that you read this list makes me feel: Thankful. I hope that it helps to change the way you see other people.

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

19 comments:

Kristina P. said...

I really appreciate you sharing this with us, Denise. I can't even imagine what you have to deal with, and yet you always seem so positive.

Susan warmchocmilk said...

I'm sorry you have to struggle with this.

Deb said...

i think this is such an important post. you should consider permanently linking to it on your about me page, or something.

you should not feel embarrassed or ashamed... but i understand. i just think you are so strong and wonderful and anyone who thinks otherwise can bite me!

Mom said...

Great job explaining your illness, daily issues, medication etc. I pray for you daily knowing how much is on your plate and how much you have to deal with. Just remember as much as you are hurting and going thru God will only give you what you can handle. It is hard to believe but it is so true and you know that. Keep hanging on and trying to deal daily. I love you. Mom

Faithfulmom2 said...

What a suffering you have! I am so glad you have Blogging to pass your time. I think Blogging is a lot better than therapy and less expensive! I cannot imagine dealing with this and having children. You are an amazing Mom! I deal with my stroke and it makes me feel so different but my kids are so wonderful being patient when I forget things. I will continually keep you in my prayers!

Amy said...

WOW! I know there is not much that you hide from me about your illness but I learned a lot about you from this!

I love (and am honored!) when you save some "spoons" for me. And completely understand when you have to use them for your family.

Save some for me on Friday! GNI! Pick a Movie!

Kristin said...

That is such an honest and touching set of questions. Thank you for sharing them with us.

M-Cat said...

Thank you for posting this! My SIL deals will fibromyalgia. I don't think anyone truly comprehends how bad her days can be.

I'm gonna be sending her to your post.

xoxoxox
M

Wendyburd1 said...

I know what you mean about people dismissing your illness because you look fine. Diabetes is scary and people have no idea of the things I have to worry about, and when I get hypoglycemic and I NEED help, juice and sugars and they look like I am lazy and should get it myself, it is frustrating to the point I want to cry. If it was so easy to get up and do it myself, I would!

Amy said...

Thank you for sharing this.

Alice in Wonderland said...

Thank you so much for sharing this!
You are one brave woman! It's fine for people to keep asking "How are you ?" and you always reply "I'm fine", but really you want to say is "No, I'm not fine!"
People can SEE that you have a broken arm or leg, but these other illnesses are so hard to describe to other people. I know that it is easy for me to say, but keep your chin up, girl and just do the best that you can. I'm sure that other bloggers would agree with me on this one.
Thoughts and blessings are with you.

Rebecca Jo said...

I love the honesty in this... & the way it draws attention to the REAL side of fibryo... good for you!

LOVE your scripture too!!!

WinnyNinny PooPoo said...

Thank you for sharing your list. Please feel proud that you are able to cope with your multiple issues! Illness stalks the world like scattered rain showers, some of us get drenched and some are never touched. I'm thinking we all need an illness umbrella so some of the bad vibes can roll off and hit the ground instead of us!!

Terri Ferran said...

As a fellow fibro sufferer I can say "I understand!"

Thank you for caring enough to share.

One thing that gets me out of bed in the morning is knowing that if I just get up and walk around a bit I will feel "less bad." Feeling "good" doesn't ever seem to be an option.

Hang in there and keep blogging!

Jasmine said...

Thank you for visiting my blog.

Great list - I completely forgot about the simple advantage of a cordless phone :)

Miss Diagnosis said...

I enjoyed reading this and really connected with the statement about not planning anything for after a shower. It's amazing how tiring that can be, isn't it? Sometimes I decide not to go somewhere because just the thought of taking a shower makes me feel overwhelmed.

A True Heart Girl in Jersey said...

My Mom suffers from sjorgren's and both types of arthritis. It is very hard for her too, and the methatraxate was too much for her, she quit it. She also has about 10 other ailments and she isn't nearly as positive as you. She blames God for everything and really martyrs herself. I know her mood swings are not herself but it is such a heartbreak to be around her for too long. Not sure how long you've been reading my blog, but last October/November was a tough time for my Mom. Thank you for commenting - I had a sip for you!

Rochelle said...

I really appreciated reading your list. It does appear we have a lot in common! I look forward to getting to know you more. :)

Annette said...

Thank you for sharing...the best part for me was the reactions of others (you don't look THAT bad) and knowing a great way to be a friend is to just accept you, cancelations and all. :) You've helped me be a friend, I'm sure.

About Me

My photo
Im a Christian Stay at home mom...that means I am a professional multi-tasker and I give all the credit to Jesus. I am married to my best friend and have 3 wonderful sons. God didn't promise days without pain, laughter without sorrow, nor sun without rain, But he did promise strength for the day, comfort for the tears and light for the way.

More about Me....

Here are some posts that explain about my illnesses

Health Class 101

Things you need to know

Mornings and Why I don't mind being sick