Please support National Invisible Illness Awareness Week! If you have an invisible illness, copy and paste this, and write your own inspirational story in the answers to the questions. Tag random people that might not know about what you are living with, or that you are living with it, so they can spread the word about invisible illnesses.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Reflex Sympathetic Dystrophy (RSD); also known as Complex Regional Pain Syndrome (CRPS)
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: the loss of freedom and independence that comes with this disease. I am only 23 years old, but I am not allowed to drive, and depend on others for basic needs.
5. Most people assume: that "it's all in my head" or that the pain isn't as bad as I say it is. Most assume this because I often have a smile on face; they don't realize how much effort it takes to put that smile there.
6. The hardest part about mornings are: the nights before. Research has shown that patients with RSD/CRPS or other types of chronic pain have increased activity and duration of activity in their prefrontal cortex of the brain; this translates to an inability to calm down, relax, and unwind at the end of the day, which results in the inability to rest. Often, I am lucky to get only a few hours of sleep each night, because I can't calm down and because of the pain.
7. My favorite medical TV show is: Mystery Diagnosis on TLC- they did an episode on my disease!
8. A gadget I couldn’t live without is: my cane, wheelchair, and the time-released pain patches and medication that technology has come up with (because of the time released items, the side effects I have are minimal compared to other pain meds).
9. The hardest part about nights is: Trying to calm down so that I can attempt to get a few hours sleep, and the pain that has accumulated throughout the day; laying down and not having things to do means I can't ignore it.
10. Each day I take: comfort in knowing that this is real; it's not in my head. This is a real, debilitating disease recognized by doctors and while it takes so much from me, I know that since it is real, I have hope for what will come in treatment for it.
11. Regarding alternative treatments: Faith and hope get you through so much on the difficult days, and give you something to praise the Lord about on the good days. I know that I have my guardian angel watching out for me, and no matter what happens, God and Jesus love me for me.
12. If I had to choose between an invisible illness or visible I would choose: invisible- I hate the pity I get from people who know I have the disease, and I don't think I could take the amount of pity I would get from a visible disease. Though I have to say, being helpful and pitying someone are two very different things; remember that when someone in a wheelchair is struggling to get through the door by themselves. Hold the door for them, smile, and help them out- but don't pity them.
13. Regarding working and career: Unfortunately, the work force is not a place that is very understanding, nor does it want to be. I have lost jobs over this disease, because they don't understand or care about the amount of pain I am in. But I keep trucking, and as long as I can do what I really want in life- to be a wife and mother- then I will be fine.
14. People would be surprised to know: How exactly powerful the medication I am on is. I take enough to just get through one day that would put a fully grown man to sleep, and would kill a child. Also, the amount of surgeries and minor procedures I have had would shock people for a disease that isn't visible- I am at 18 and counting.
15. The hardest thing to accept about my reality has been: It's permanent and there is no cure. I am 23 years old, and have a crippling and debilitating disease. Also, some people think I am making this up or it's all in my head- I have to let those people go and move on and not worry about them.
16. Something I never thought I could do with my illness that I did was: unfortunately, there isn't much that I have been able to do with this disease. But that's okay, because I am headed towards the biggest moment in my life, and I will do that with this disease- I will marry the man I love on October 2, 2010. I guess you could say planning my life and wedding is something I never thought I would be able to do.
17. The commercials about my illness: do not exist.
18. Something I really miss doing since I was diagnosed is: Horseback riding. When I was riding, even though I wasn't very good, I felt so free and good about myself. Now, I won't ever be able to ride a horse again, and it breaks my heart so much.
19. It was really hard to have to give up: my independence and driving abilities. Like I said before, when you are 23 and have to depend on others, it's extremely hard to accept.
20. A new hobby I have taken up since my diagnosis is: I didn't really take up new hobbies, but I have gotten more involved in the ones I loved doing before, but never had time to do: sewing, jewelry making, and scrapbooking. Also, I have become very active in the Boy Scouts with my fiancee, and it really helps me to teach others about disabilities- we do it every time we work with the kids in scouting.
21. If I could have one day of feeling normal again I would: go horseback riding, for hours and hours.
22. My illness has taught me: who really cares for me, what true love is, patience, humility, faith and hope, and that vanity has no place in my world.
23. Want to know a secret? Just because this disease has effected my life in every aspect, including my weight and ability to exercise, I am still gorgeous and beautiful in every aspect of the words, and no one will take that away from me.
24. I love it when people: are helpful without pitying.
25. My favorite motto, scripture, quote that gets me through tough times is: There is no great loss without some small gain (Ma Ingalls from Little House on the Prairie), and If you want to make God laugh, tell him your life plans. Also, Michael J. Fox once said, "Vanity is the first thing to go" when dealing with a chronic illness, and that has helped remind me tremendously what this is all about.
26. When someone is diagnosed I’d like to tell them: It won't be easy, but this will not beat you if you don't let it. Rely on those who want to help, pray, and have faith.
27. Something that has surprised me about living with an illness is: the response I get from certain individuals, and the response I don't get from other individuals. Sometimes the people you thought wouldn't step up to the plate are the people who go above and beyond, and the people who you thought would stick by your side are often the first to desert in times of need.
28. The nicest thing someone did for me when I wasn’t feeling well was: love me. Every day Brian makes sure to let me know that regardless of this disease, he still loves me, he still wants me to be his wife and the mother of his children, and he makes sure to praise me for doing the small things that others find insignificant, but are huge accomplishments for me.
29. I’m involved with Invisible Illness Week to:educate, motivate, and let others know that they are not alone in dealing with Invisible Illnesses.
30. The fact that you read this list makes me feel: appreciated and acknowledged as someone fighting a huge and difficult battle that no one should have to fight. Thank you; I cannot say thank you enough.
Showing posts with label handicapped. Show all posts
Showing posts with label handicapped. Show all posts
Tuesday, September 15, 2009
Saturday, September 12, 2009
Hi. Do you remember me? I'm Brittany, the bride?
Yes, I know. It's been a while. Please don't get on my back about it just yet; I promise, cross my heart, I will tell you why.
First off, what do you think of these?
I love them. Love them, love them, love them. They are the color of my train/the color of the girls dresses. They are comfortable. They are nifty, something not expected- from me, of all people. They aren't heels, something I can't wear. They aren't $80 for unflattering, uncomfy flats that I will wear only once. And, best of all, they are sparkly.
My mom thinks I am nuts for wanting to wear something like this. Maybe I am. But when you can't wear heels, and dressy flats put you in pain, why would I want to wear something not like these? Brian loves them, as does half my facebook- in fact, there wasn't a bad comment on the picture at all. Brian even offered to buy them for me! Plus, with these, hopefully I won't need as much help on my wedding, in terms of using my cane/wheelchair/someone's arm.
But wait, Brittany. I thought you told us that you would have your surgery, lose the weight, and walk down the aisle pain free and aide free to the man of your dreams?
Yeah, that was the case. Or so I thought. They denied my surgery.
Shock. Pain. Hysteria. Tears. Yelling and Screaming. More tears. Grief. All of these emotions have been felt over the past 2 weeks, when I found out that I was denied. This was supposed to be a foolproof case, no sweat. Well, apparently, the board that reviewed my case (supposedly an independent board- ha. ha. ha.) doesn't read their facts- or their own reports, for that matter. They think I need to try many different drugs, PT, a longer opiate regime...ALL of which are listed at the beginning of the report as tried! We honestly don't know what to make of the report, either, since they don't really say if I should retry, or if I have to try and then can get the surgery. We think it's the latter, which means all we should be able to do is make a list of dates with the item tried, and show the courts.
Seems easy, huh? Yeah, well, as easy as that sounds, Delaware courts do not seem to favor worker's comp cases, and especially those that deal with RSD. Plus, with the courts systems being so overloaded, this could take 8 months to a year. Which means that I won't have the surgery by my wedding. And yes, it is as heartbreaking a blow to me as you can ever imagine.
Brian has been wonderful- he said he proposed to me as a larger size, he loves me as a larger size, and if it means he marries me as a larger size, then he totally okay with that. It helps somewhat to ease the insecurity I feel about myself, but not totally. Overall, I think Brian is the one person I ache and hurt for the most. He takes care of me. Mentally, phsyically, emotionally, spiritually, financially- in every way you can imagine, he cares for me. And while I know he loves me and would do anything for me, it still is very taxing on a 23 year old. Brian never thought that the woman of his dreams would be an invalid- hell, I never thought I would be sick when I got married. So to watch him care for me in every sense of the word, and then to get news for this, makes me ache for him more than it does for me.
I love Brian, and I am trying to stay strong and rely on my faith during this difficult time. The doctor upped my meds again, did another injection (which calmed down the flare up I was having), and we just keep trucking. It's not easy, don't get me wrong- this is one of those times in life that no one thinks they will ever have to go through. Sometimes it feels like my faith is on sinking sand instead of rock, but when that happens, I pray for the perserverence that I know only Christ can give me. He, after all, loved me before I was knit together in my mother's womb, and will never leave me, no matter what.
First off, what do you think of these?
I love them. Love them, love them, love them. They are the color of my train/the color of the girls dresses. They are comfortable. They are nifty, something not expected- from me, of all people. They aren't heels, something I can't wear. They aren't $80 for unflattering, uncomfy flats that I will wear only once. And, best of all, they are sparkly.
My mom thinks I am nuts for wanting to wear something like this. Maybe I am. But when you can't wear heels, and dressy flats put you in pain, why would I want to wear something not like these? Brian loves them, as does half my facebook- in fact, there wasn't a bad comment on the picture at all. Brian even offered to buy them for me! Plus, with these, hopefully I won't need as much help on my wedding, in terms of using my cane/wheelchair/someone's arm.
But wait, Brittany. I thought you told us that you would have your surgery, lose the weight, and walk down the aisle pain free and aide free to the man of your dreams?
Yeah, that was the case. Or so I thought. They denied my surgery.
Shock. Pain. Hysteria. Tears. Yelling and Screaming. More tears. Grief. All of these emotions have been felt over the past 2 weeks, when I found out that I was denied. This was supposed to be a foolproof case, no sweat. Well, apparently, the board that reviewed my case (supposedly an independent board- ha. ha. ha.) doesn't read their facts- or their own reports, for that matter. They think I need to try many different drugs, PT, a longer opiate regime...ALL of which are listed at the beginning of the report as tried! We honestly don't know what to make of the report, either, since they don't really say if I should retry, or if I have to try and then can get the surgery. We think it's the latter, which means all we should be able to do is make a list of dates with the item tried, and show the courts.
Seems easy, huh? Yeah, well, as easy as that sounds, Delaware courts do not seem to favor worker's comp cases, and especially those that deal with RSD. Plus, with the courts systems being so overloaded, this could take 8 months to a year. Which means that I won't have the surgery by my wedding. And yes, it is as heartbreaking a blow to me as you can ever imagine.
Brian has been wonderful- he said he proposed to me as a larger size, he loves me as a larger size, and if it means he marries me as a larger size, then he totally okay with that. It helps somewhat to ease the insecurity I feel about myself, but not totally. Overall, I think Brian is the one person I ache and hurt for the most. He takes care of me. Mentally, phsyically, emotionally, spiritually, financially- in every way you can imagine, he cares for me. And while I know he loves me and would do anything for me, it still is very taxing on a 23 year old. Brian never thought that the woman of his dreams would be an invalid- hell, I never thought I would be sick when I got married. So to watch him care for me in every sense of the word, and then to get news for this, makes me ache for him more than it does for me.
I love Brian, and I am trying to stay strong and rely on my faith during this difficult time. The doctor upped my meds again, did another injection (which calmed down the flare up I was having), and we just keep trucking. It's not easy, don't get me wrong- this is one of those times in life that no one thinks they will ever have to go through. Sometimes it feels like my faith is on sinking sand instead of rock, but when that happens, I pray for the perserverence that I know only Christ can give me. He, after all, loved me before I was knit together in my mother's womb, and will never leave me, no matter what.
Tuesday, June 30, 2009
Recently, Brian got fed up with the way our society works, in regards to disabled folks. When you are engaged to one, discriminatory events and things open your eyes to how disabled people are truly treated. And when Brian gets upset, he becomes active about it. It's one of the reasons I am so blessed to have him. Instead of doing nothing, or complaining (which I will admit, I have a tendency to do), or blaming, he becomes active and sets out to change, whether it be laws, viewpoints, or whatever he can affect. His activist mindset is one thing that attracts me to him, and I am hoping that being around him will change me for the better. There are so many things he does that I can only hope to strive towards, and I am so lucky to have him, and his love- there are times I definitely do not deserve it.
Back on track, when certain events happened that Brian could not ignore any longer, he decided to do something about it. What did he do? He started a Twitter, specifically for cataloging events, locations, people and places that have an impact, positively or negatively, big or small, on the disabled community- mostly in Delaware, but other places we go as well. I am so proud of him! Without doing much, he already has 30+ followers, and it's not been that long at all.
If you want to follow him, head to http://twitter.com/handicappedDE. Feel free to follow him on there. I am so proud, so blessed, so in love with the man that I am pledging my life to, and I couldn't be more happier that God sent him to me. I am so thankful, in so many ways, for him.
Back on track, when certain events happened that Brian could not ignore any longer, he decided to do something about it. What did he do? He started a Twitter, specifically for cataloging events, locations, people and places that have an impact, positively or negatively, big or small, on the disabled community- mostly in Delaware, but other places we go as well. I am so proud of him! Without doing much, he already has 30+ followers, and it's not been that long at all.
If you want to follow him, head to http://twitter.com/handicappedDE. Feel free to follow him on there. I am so proud, so blessed, so in love with the man that I am pledging my life to, and I couldn't be more happier that God sent him to me. I am so thankful, in so many ways, for him.
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