30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

As promised, I am using this week to start a new series about my illness, Dysautonomia. In anticipation of Invisible Illness Awareness Week, I am going to start the week off by completing this 'meme' created by Lisa Copen, founder of Invisible Illness Awareness Week. She is encouraging anyone with an invisible illness to complete the meme and then post it on their blog, Facebook page, email, etc. Once you have done that, then go to the Invisible Illness website, HERE, and leave a comment that includes a link to your post. On September 5th, there will be two people selected to win a PRIZE out of those who have commented!

1. The illness I live with is: Dysautonomia with Reflex Syncope - This means there is a dysfunction of my autonomic nervous system that causes me to pass out very frequently, especially if I stand suddenly or for more than a few minutes, often just seconds.

2. I was diagnosed with it in the year: 2007

3. But I had symptoms since: Adolescence

4. The biggest adjustment I’ve had to make is: that I'm homebound and mostly bedridden. I am no longer able to enjoy most of life's basic activities.

5. Most people assume: that if I'm sitting up, talking, smiling or carrying on a conversation that I'm 'feeling better' physically. Doing any of those things are very hard anytime of the day or night for me now. I struggle just to talk sometimes.

6. The hardest part about mornings are: waking up and trying to move. I must take medications before I can even get out of bed. After that, I must rest for a while and let them take effect before I am able to get up. Then, I must have assistance getting dressed, getting down the stairs and into my recliner where I will stay ALL DAY!

7. My favorite medical TV show is: none really. I don't watch these much anymore. It reminds me too much of things I can't do any longer. I worked in the medical field for nearly 20 years and now, because of my illness, I can't.

8. A gadget I couldn’t live without is: probably my laptop because it is my sole connection to the outside world except through my family. I also must have my wheelchair in order to get around most days.

9. The hardest part about nights are: the excruciating pain I often endure and my constant struggle with insomnia. I am always exhausted even if I sleep a few hours.

10. Each day I take __ pills & vitamins. Let's just say it's a lot and leave it that!

11. Regarding alternative treatments I: am relying on my team of doctors to advise me best on what to do.

12. If I had to choose between an invisible illness or visible I would choose: to leave it to the Lord. This isn't a choice I would make. They are both equally tough, I suppose.

13. Regarding working and career: I am now completely disabled. Amazingly, I was approved for Social Security Disability Insurance (SSDI) on my very first application. I applied last December and was approved in February of this year. The sweet lady who took my application over the phone said she was going to try to get it 'expedited' and she did not lie! All-in-all, it took a total of about 6 weeks - a complete God thing! I do, however, miss being a Paramedic sometimes, but I am very thankful for what I do have.

14. People would be surprised to know: that being able to sit at home all day, every day, is not all it's cracked up to be. 'Bed-rest' is NOT fun after about the first week!

15. The hardest thing to accept about my new reality has been: not being able to participate in the lives of my family like I used to. I do not like sitting on the sidelines - or, actually, NOT sitting on the sidelines!

16. Something I never thought I could do with my illness that I did was: start this blog!

17. The commercials about my illness: do not exist. :0(

18. Something I really miss doing since I was diagnosed is: pretty much everything, especially the things my family does. It is not easy being stuck at home all the time.

19. It was really hard to have to give up: control. God has that. Well, at least I keep giving it to Him on a daily basis.

20. A new hobby I have taken up since my diagnosis is: message boards and blogging.

21. If I could have one day of feeling normal again I would: have just a normal day with my family. I would chose a Friday and go to the football game where I would watch the girls march and I would cheer from the top of the bleachers!

22. My illness has taught me: how truly blessed I am! It has taught me to not take anything in life for granted and that my husband really does love me unconditionally.

23. Want to know a secret? One thing people say that gets under my skin is: 'You look really good, so you must be better.' OR 'You are not in the bed, so you must be better.'

24. But I love it when people: ask questions about my illness out of a genuine desire to know more about it and to understand how I truly feel.

25. My favorite motto, scripture, quote that gets me through tough times is: Scripture from Jeremiah 29:11 ¹¹ For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

26. When someone is diagnosed I’d like to tell them: to learn as much about their illness as possible and be their own advocate! I would also tell them they are not alone. Find other people who have their same illness to encourage them. Find support through their local community support groups, internet support groups, message boards, etc. You do not have to go it alone. Above all, trust in the Lord to see you through! People will let you down but He will NEVER let you down!

27. Something that has surprised me about living with an illness is: how many people try so hard to determine how I 'caught' this disease and/or how I should 'treat' it or how the doctors should be treating me.

28. The nicest thing someone did for me when I wasn’t feeling well was: This just can't be limited to just one person or occasion! There have been so many people who have sent notes, called and come to visit. Others who have made us dinner, brought flowers, cleaned our house and helped in our yard. The stories about these things are endless and I am forever grateful!

29. I’m involved with Invisible Illness Week because: I desperately want people to know that just because an illness is not seen does not mean it does not exist or is not as intrusive as a visible one. There is so much people don't understand about these illnesses and that is why awareness is important.

30. The fact that you read this list makes me feel: honored that you cared enough to do so.

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

I will be blogging more about my specific illness later this week as promised! Thanks so much for taking time to read this. I really appreciate it. See ya soon!

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