** Due to the increasing severity of MY ILLNESS, it has become impossible for me to continue to post on a regular basis. Unfortunately, as much as I desperately long to, I am also unable to visit each of your blogs often or reciprocate all the loving, supportive comments many of you continue to leave - even though at times it may appear as though you've arrived at some long ago, forsaken blog! With that said, I really want you to know that I miss every single one of you and that I really am still here! I'm just too sick and too weak most days to be able to sit up long enough to create a brand new post...or even read one. However, I absolutely do receive AND read every new encouraging word you leave (and, often, the old ones, again and again!) and I cherish them now more than ever! I truly appreciate your love, support, and, most importantly, your precious time spent on your knees in prayer for my family and me. It ALL means the world to me and I am truly blessed to have friends like you!
~Hugs and Sister Love, Teresa

FYI: All comments come to my email, which I can easily read on my phone. I also enjoy Facebook on my phone because I can catch up on A LOT in a very short time there. Soooo, if you're on Facebook, come 'friend' me there! {{HUGS}} **

Tuesday, September 1, 2009

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!



Reblog this post [with Zemanta]

36 comments:

Tabitha@ichoosebliss.net said...

I had never heard of this before. I just want to hug you so tightly right now! Not out of pity, but because of your strength and honesty to tell your story.

missy said...

wow.......not sure what to say!!!
after ready your story i know that you are one tough lady.....and makes me think about how we have days that we take the simple things in life for granted.
thanks for stopping by my blog!!!!!
i wish we lived closer because we would sure love to take your daughters senior pictures......but iowa is quite a drive......so good luck finding a photographer!!
i must go check out the rest of your blog!!!!

Jennifer said...

You have a strength that surpasses the physical. I'm not sure how you do it.

Thanks for stopping by.

shraddha/april@theselfloveproject said...

Teresa, I have learned so much from this post! Thank you for sharing... It's amazing to think about how significantly this illness has effected your life.

Your courage, faith, and devotion to God are inspirational to me. I especially appreciated your reply to no. 12. That is exactly how I would have answered.

Love to you!
~April

Conquer The Monkey said...

Hi Teresa:
I just read this blog post and now am welling up with tears. I am very "proud" of you for having the courage to talk about it and help others understand your disease. I will say a prayer for you and your family tonight.

I don't have anything as severe as your condition but I went through a couple years where my asthma was so bad (after being exposed to some toxic stuff) that I was unable to do much, including taking walks or working. I was in my early 30's and people didn't understand.

Thank you for being brave and I will be following you.

Cameron from
Conquer The Monkey

Robin said...

I have never heard of Dysautonomia with Reflex Syncope and I don't think I have ever known anyone with such an illness. I am sorry that this has happened. But I am glad you are out there bringing it to the front; educating the rest of us. I am so very impressed and in awe of your strength and courage. I wish if I could take your place in that recliner for a day or two so that you can partake on those side lines.
You are my new found hero.

I hope your day has been beautiful

Amandasaurus said...

I think it's human nature to try and determine how/why something like this comes upon someone, so don't be too hard on those who want to figure it out themselves (although I can't blame you for resenting their criticism of your doctors). Those who try to figure it out for themselves probably just haven't been able to let go and let God as you have; I know that would be hard for me. But you are a shining example for them!

roadrunner201 said...

I am so sorry that you are going through this after all the years you spent helping others! Thank you for posting about this so that I can pray specifically.

Joan said...

You know I read the entire lists because I love lists!

Actually, I read it because I want to know how you live with this disease. I admit that I watch "Mystery Diagnosis" and your disease was one of the mysteries one night. I kept thinking "I wonder if this is what it is like for Teresa."

Ruby Red Slippers said...

I also, have never heard of this- and I am so sorry you have it.
Thank you for your sweet comments on my blog-and I pray God heals you-we both know He can!
God Bless!

Shelley said...

hi, I just posted about this invisible illness awareness after reading your blog.
I too suffer from an invisible illness, this post gives me hope and lets me know I'm not the lone ranger. Thanks

foxy said...

Wow! What an inspiration you are. Truly.

Thanks for coming by my blog and leading me back to yours! I will be coming back here more often...

Big hugs to you.

Zeemaid said...

I have never heard of this before but then I am sure there are many illnesses that we never hear of. It sounds totally difficult to bear and I can well imagine that "bedrest" is not all it's cracked up to be.

It sounds like you have a strong faith in God and I am sure that does help you bear your lot but still it must be extremely difficult. Many of say I'd just like to be in bed for a week and blog and read to my hearts content but know that once there I'd be so bored.

I am glad you have the opportunity to blog and be out there. It must help pass the time.

I have a friend who also has an invisible illness. She is not diagnosed and I too have been guilty of "she looks so healthy, she must be better" only to discover she was just having a good day.

Not much else to say except thanks for sharing and I am glad you have a great family.

Blessings to you! (hugs)

Cheryl Ann said...

Thanks so much for stopping by my blog - I appreciate the comment love ;)

I have a colleague who's daughter has familial dysautonomia - I know bare bones details about her illness, and reading your meme helped me learn more about yours. What are the differences?

the girl in the green scarf said...

It is amazing how positive you are and how you can find the strength to talk about your problems, I know it's not easy to tell everyone about your vulnerability, especially in a world where everybody's looking up for perfection and showing your sensitive sides makes you unable to be a part of a community...I am so thankful for your blog, it gives me the strength to go on and in a small way, I understand you..of course, my poor broken wrist doesn't compare with your illness, but I know being home all day it's not too much fun, even if I'm pretty busy with school(I take some classes online)..
You can do all things through God who strengthens you, don't forget it!.
Life is hard;handle with prayer.
God bless you, my friend!
*hugs

Teresha@Marlie and Me said...

You never cease to amaze me! People cannot read this and not see the power of God's grace in you. How else to explain your incredible strength and desire to educate and help others in the face of so much suffering? Only faith makes it possible. Take care sweetheart!

Stereos and Souffles said...

You are so brave! Thanks for visiting me today, you are an inspiration.

Nana said...

I too have never heard of your illness. My father has an invisible illnes also. It is genetic and my siblings and I have been told we have a 50/50 chance of having it. It is called Spinal Cerebellur Ataxia. He will slowly lose all body function. He sits in a chair all day too.

He has fought a hard fight. Two years ago he could still garden w/ me. He would crawl to do so. His arms would give out and he would fall face first into the dirt, prop himself up and start all over again. He can't even do that anymore. I hate that he has to watch me gardening through his window.

People also think he is not as sick as he is. Talking even holding up his head takes great effort. He tries to put on a good show. He is always cheerful so people just don't understand. Those that don't know him that is.

He also leaves everything in God's hands. I don't talk about him much on my blog because I get too emotional. My blog is usually a bunch of fluffy stuff and a recipe or two.

I do talk about my little grandaughter Chloe who is handicap. Profoundly handicap and such an Angel. We all feel extremely blessed to have her in our lives.

Thank You for stopping by my blog I am glad you did.

We will keep in touch.

Whatever Dee-Dee wants said...

I am glad you did this post, I hadn't even heard about this illness before.

Amanda @ Serenity Now said...

What a great post. I have never heard of your illness, and it was eye-opening to read what you are going through. Keep your eyes on Him!! :) Thank you for stopping by!

Mrs. Montoya said...

What a lovely blessing to find your blog at the end of a very long day. I don't think your illness is what defines you - it is your faith and incredible outlook. God is doing good work through you right from your recliner ;) Funny how those things happen! Thank you for popping over from SITS and your comments on our first day of school. It was terrific and I feel so blessed. I'll be back over and over again. You have inspired me tonight. Thank you

Dazzle ME said...

I think it is wonderful that you are raising awarness-as like others I had not heard of this before. I think you are an inspiration to all and may God bless you.
Thank you for stopping by at my blog and I hope you also may have a fantastic week! :)
xo xo

Jo said...

Hi, Teresa--Jo here. I just wanted to thank you for stopping by my blog to offer your words of support. Truly, deeply appreciated.

I'm so sorry for the turmoil you are facing in your life; your faith seems to be strong and is what is likely carrying you through--along with your obvious visible strength to combat your invisible affliction.

Stay well, stay strong and I'll be back.

Bless you.

Peace, love and happiness,
~Jo
"Diary Of A Sad Housewife"

kimert said...

Thanks for stopping by! :)

Amber Page Writes said...

Thank you for teaching me about your disease. Not surprisingly, since you call it an invisible disease, I'd never heard of it before. I admire your strength - and your faith. You are a remarkable woman.

Casey said...

You are such a strong woman and I admire that about you!

I just wanted to drop by and say I was thinking about you. I hope you are feeling well. Take care!

Melissa Erickson said...

What a strong and inspiring woman you are! Thank you for opening up and sharing your story. I am sure there are many woman out there that will be helped by this.

Susan Crabtree said...

Thank you for sharing your story. I truly admire your courage and strength.

B said...

Teresa, what can I say? I am in awe of your determination and faith. God Bless.

Thanks so much for stopping by.

B x

Stephanie said...

Thanks giving us a glimpse of your life with Dysautonomia!

#14 - I hear ya!! I was on bedrest for 2 pregnancies...and, you're right! It's just not as good as it sounds! :-)

#25 - This is also one of my favorite verses!

Thanks for stopping by my blog and saying HI! :-)

___________________________________
{Her Creative Side}
My place to share recipes that I love as well as new ones I try (flops, too!), Christian book reviews, and a little bit of my crafty side, especially digital scrapbooking!

Crown of Beauty said...

Dear Teresa,
Thank you for sharing your life with us your dear blog friends.

You are an encouragement.

I never heard about your illness before, so reading this post helps me get to know more about you, and what you are going through.

May God continue to uphold you and strengthen you.

Love
Lidj

Rachel said...

Thank you so much for sharing your list of 30 things. I can understand so much of it. I like what you said about bedrest: "Bed-rest' is NOT fun after about the first week!" So true!

Deb said...

Teresa,

You're one.

Amazing woman.

Wife.

Mother.

Want you to know you can lean on me anytime.

Sweet dreams.

Lora said...

Thanks for posting this window into your daily life and helping us understand more about this illness.

You are inspiring.

Visiting you from SITS--have a great day!

Mary @ The Writer's Block said...

Teresa,

Thanks for your kind words on my blog.

I have learned so much from your post. You are so courageous to speak so candidly about your illness. I admire the way your strong faith obviously comforts and guides you.

Prayers and blessings to you, friend. Will be back for future visits. :) I'm following you here and on Twitter.

Anonymous said...

God bless you! Thank you for being brave enough to share your struggles with the world. I am a parent of a child recently diagnosed with a chronic invisible illness and I am scared, confused and overwhelmed with the changes to our lives. Please know that the time you took to write these 30 things means something to me.

Linkwithin

Related Posts with Thumbnails