** 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}} **
Showing posts with label Invisible Illness. Show all posts
Showing posts with label Invisible Illness. Show all posts

Tuesday, December 8, 2009

CAN THOSE WITH AN INVISIBLE ILLNESS
PARK IN A BLUE SPOT
WITHOUT OTHERS SEEING RED??


I saw the following article on the Invisible Illness Awareness Week website over the summer and it really struck a cord with me. The biggest reason is because I used to be extremely passionate about those people who parked in handicapped parking spaces but, in my ever-so-holier-than-thou-professional-medical opinion, surely did not need them! HA! What does that Proverb say?? 'Pride goes before the fall'?? Yeah, that's it.

Since we are right here in the middle of the holiday shopping season, I thought I would post (with permission) this great article for you all. I hope that it will help EVERYONE to think twice the next time you see someone parking in one of those precious parking spaces who may not 'look' as though they 'need' to. Disabilities come in lots of different shapes and forms. Many are invisible to the untrained AND the trained eye. It is simply impossible to know if someone is truly disabled just by looking at them.




“Do you know the fine for using someone else’s handicapped parking permit is $300?”
“That parking spot is saved for the disabled! You should be ashamed of yourself!”
Nearly everyone with an invisible illness has been told, “You don’t look disabled to me!” One of my friends replied, “Well, you don’t look stupid to me.” I just bite my lip to try to prevent the tears from forming, broken-hearted that I appear to be deceptive, when I would do anything to give back this parking perk that I use on a rare occasion.
As I circle the parking lot a fourth time on this day I hope for a spot to open up within two-hundred yards of the store, but there is nothing remotely close at this bustling superstore where I need to buy my prescriptions and milk for my toddler. My rheumatoid arthritis is flaring badly, causing extra fluid in my knees to dislocate pieces of loose bones. Every step is painful and unpredictable.
Finally I sigh in resignation and pull into the farthest “blue parking spot.” I reach for the placard–the one that has a bold white symbol of a wheelchair–and no, I don’t have a wheelchair–yet. So after fifteen years of having this “privilege” at my disposal I still warily scan the area before reluctantly dangling the placard from the rear view mirror. Is there anyone watching, wondering, or waiting, ready to confront me?
I’ve had scathing notes left on my windshield and many people, empowered by television exposés, have approached me with their opinions. Judgmental expressions and whispers sting just as much. My husband and I adopted a baby and when I would get my child of the car I would avoid eye contact with onlookers because I could hear their whispers of, “She’s not disabled! Or–if she is–she has no right to have a child!”
Nearly 1 in 2 Americans (133 million) live with a chronic illness. It could be diabetes, cancer, cystic fibrosis, fibromyalgia or even chronic back pain. Many illnesses make walking long distances impossible because of limited lung capacity, physical pain, or unpredictable numbness in the legs. According to statistics provided by the U.S. Census Bureau, about 96% of these illnesses are invisible. There is no sign of the illness existing, nor the use of an assistive device like a cane or a wheelchair.
I began National Invisible Chronic Illness Awareness Week in 2002, which is held annually in September, after witnessing thousands of people who had frustrations, fears, loneliness, and bitterness, about feeling invalidated. One’s illness, age, diagnosis, or level of disease degeneration, doesn’t change the emotional pain.
Strangers and loved ones alike doubt the severity of our illness or even the diagnosis. We’ve heard, “You look so good! You must be feeling better.” But we don’t feel better. We just bought some fake tan in a bottle and pasted on a smile.
National Invisible Chronic Illness Awareness Week is a time to acknowledge that invisible illness is more prevalent than we’d imagine and everyone–both those who are healthy and ill–can make a difference by encouraging someone with an invisible illness, rather than tearing someone down.
Are those parking spots painted blue because they give so many people the blues? That small area of square footage is a breeding ground for many frustrations as we are forced to defend our illness and character to total strangers. I’d gladly trade in my placard indefinitely for just a week of having my old body back when I could run, sit on the floor, or even hold a fork without tendons popping out of place.
I anticipate the day when a nationally designated system is formed. Texas law states that blue placards are for those who use assistive devices; red permits are for people with a “condition that impairs mobility.” In other states, red symbolizes six months of disability and blue is permanent. It’s confusing! And for one with invisible illness, the wheelchair symbol discredits both our physical pain and–in the eyes of others–our reputation. Until then, we rely on Invisible Illness Week bumper stickers.
The next time you see a healthy looking man loading groceries into his car–parked in the “blue spot”–don’t glare. Stop and offer to help him, or just smile nicely, giving him the benefit of the doubt. Seventy percent of suicides have uncontrollable physical pain as a factor. Your smile may save his life. At the least, it will astonish him, perhaps providing him with genuine encouragement he hasn’t felt for months.



To find more articles and overall support while living with a chronic illness and/or pain, please visit The Invisible Illness Awareness Website or Rest Ministries! Lisa Copen is the director of Rest Ministries, author of 'Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend' and founder of National Invisible Chronic Illness Awareness Week.

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!



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Wednesday, August 19, 2009

INVISIBLE CHRONIC ILLNESSES

 

September 14-20th, 2009   

I will be a participating blogger during this special week.  Please be sure to join me then!  See ya soon!

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