Tuesday, August 24, 2010

Invisible Illness Week

Did you know that there is a National Invisible Chronic Illness Awareness Week?  This year, the National week will be September 13-19, 2010!  As part of the kickoff, Lisa Copen (founder of both IIAW and Rest Ministries) is encouraging bloggers who have chronic illnesses to fill out this survey.  It's to help raise awareness of Invisible Illness. 

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Sjogren's Syndrome. See here to find out more about this invisible illness.

2. I was diagnosed with it in the year: 2006 when I was 26 years old while taking care of my newborn.

3. But I've had symptoms since: 2001 I've been dealing with dry eyes and diminishing energy.

4. The biggest adjustment I've had to make is: Prioritizing what I want to do.  I can't do everything that I used to be able to achieve in the same day.  I have to spread it out according to how much energy an activity will consume. Though, admittedly, there are still times that I push myself too far.

5. Most people assume: That because my illness is invisible that it does not effect me nearly as much as a visible one.  It's also very easily forgotten since it's not staring you in the face.

6. The hardest part about mornings are: Trying to "shake off" my stiffness. Sometimes I hurt enough that I just want to burrow back under the covers and not get out of bed for the day. That doesn't ever happen since I have L around to get me going. It's also hard to not let her see how much I hurt some mornings. I don't want her to see me hurting if I can help it. At times it can be unsettling to kiddos to see that their Mommys aren't invincible.  

7. My favorite medical TV show is: I don't really watch medical shows. Stems back from the time when my Dad was into watching the Medical ER shows during dinner time.  Let me tell you that I must have an infallible stomach after watching that while eating my food. Blood and chest tubes don't go very well as a side to rare steak and asparagus!!

8. A gadget I couldn't live without is: My GPS... Because brain fog can be a terribly confusing scary issue when you forget where you are going, despite the fact that you might have been to the same place a million times! It's reassuring just having it in my glove box even if I never have to use it. I may remember how to get somewhere for the 105th time.  But on the 106th time I may need the extra little help.

9. The hardest part about nights are: I am usually very tired by the end of the night from all that I've done in the day.  Tired and hurting.  Night time is usually when my hands start to hurt.  Which doesn't make it easy to do the things I like during my "me time".  It's hard to edit photos or cross stitch with swollen hurting hands.

10. Each day I take __4__ pills __twice__ a day. This is a remarkably small amount.  I used to be on 3 more and have managed to get off of them. Some things I just deal with, for now, so I don't have go on more meds. 

11. Regarding alternative treatments I: Have not tried any.

12. If I had to choose between an invisible illness or visible I would choose: That is a hard one to choose. I have been on the side of things having a medical problem that can actually be seen when I had Bell's Palsy. It looked like the one side of my face was sliding off.  It's VERY humbling to know that people are staring at you because of how you look and that you can't do anything about it. On the other hand it is also frustrating to have people giving you looks because they can't see why you are being dropped off in front of a grocery store rather than walk the whole parking lot. I think I would rather choose what to have by the symptoms I would have with the illness.

13. Regarding working and career: I don't have to deal with that at the moment as being a mom is my career.  I had so many more career possibilities to choose from before I was diagnosed.  I will have to be careful about where I  work I return.

14. People would be surprised to know: That I try to hide how much I am effected by this illness on a regular basis.  My immediate family can see through the facade.  They know how to read my body language and see what I am really saying.  A few of my friends also have that ability.  Otherwise I try not to broadcast, in person, when I am not feeling well.  I feel completely comfortable talking about not feeling well on my blog or my Facebook headlines. I don't feel as comfortable telling someone that in person.  I never feel like the looks I receive sit very well with me, be it confused or sympathetic.

15. The hardest thing to accept about my new reality has been: My limitations. I used to have soo much more energy than I do now.  I am still trying to figure out what they are. 

16. Something I never thought I could do with my illness that I did was: Run a Moms meetup

17. The commercials about my illness: Don't exist.  Most people look at me like I have three heads when I tell them what I suffer from.

18. Something I really miss doing since I was diagnosed is: Being able to do whatever I want with out having to worry about conserving energy.

19. It was really hard to have to give up: See above question.  I am still working on it!

20. A new hobby I have taken up since my diagnosis is: Blogging.  It has made me feel as if I have a voice. And reading other's blogs has helped me as well.  I have definitely gained new insights.

21. If I could have one day of feeling normal again I would: I would do sooo many things with my daughter that I usually have to conserve my energy to do with her.  Or the things that hurt to do after too long. Fly to Alaska and play in the snow all day with her.  Take her to Florida and visit with my brother on the beach all day.  Sit on the floor and play Princess Barbies or build Lego's all day. Go to Disney World for the day and do everything a four year old girl could ever possibly want to do.  Now of course I wouldn't have the money to do all those things.  But, hey, if you are letting me feel "normal" again for the day you might as well give me all the money I want to do it!!!

22. My illness has taught me: Not to judge a book by it's cover.  As a teenager I remember asking myself why a lady was parking in the handy capped parking if she looked perfectly fine walking into the store. I have learned the truth of that the hard way!

23. Want to know a secret? One thing people say that gets under my skin is: Having people say..."If you think that's bad, I have to deal with this..." I mean come on if you are dealing with an illness I respect what you are going through.  Please don't try to trivialize what I am going through!

24. But I love it when people: To quote a fellow blogger..."ASK ME QUESTIONS.  I love when people ask me what my condition is, how it affects me, how a specific situation might impact me, what I do about problems, how I want them to help me, etc."  I ALWAYS welcome questions or comments in person, on my FB, or my blog about Sjogren's Syndrome!

25. My favorite motto, scripture, quote that gets me through tough times is: Philippians 4:4-9 (NIV) 
4Rejoice in the Lord always. I will say it again: Rejoice! 5Let your gentleness be evident to all. The Lord is near. 6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. 8Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.

26. When someone is diagnosed I'd like to tell them: Try to live life as close to "normal" as possible.  Being diagnosed with a chronic/invisible illness is not the end of it all. You just have to come up with your own new normal. 

27. Something that has surprised me about living with an illness is: How many times I have to explain what I live with having an auto immune disease.  There are so many people that don't even know what an auto immune disease it.

28. The nicest thing someone did for me when I wasn't feeling well was: My husband is fantastic about taking care of me when I am feeling down or having a bad flare. Foot rubs, giving me more "me time", telling me what I need to be doing when I know I should be and am not listening to my body, etc.  My friends are also good for showing up with random sweet teas from McDonald's, which I love!!  I've been brought to tears by that in the past. I know silly that the tears come over such smalls things.  But they make all the difference sometimes.

29. I'm involved with Invisible Illness Weekbecause: I want to further awareness of invisible illness even if it's with my humble little blog.

30. The fact that you read this list makes me feel: Like you care...about me...about furthering your knowledge of invisible illness. Which might not seem like much but the more you know the more knowledge you can pass on in totally unexpected ways... Thank you for that, from the bottom of my heart!!!

Lisa's IIAW website!

1 comment:

Crystal Wilson said...

Love this post! #27 is one I can really relate to!