I’ve written before about how grateful I am for finding someone or a group of someones who can understand what you are going through – community. It hasn’t changed. Recently I put a question to the ADEM group on “Ben’s Friends,” a website dedicated to connecting people with rare diseases, including ADEM, about helping friends understand.
The response from a man in his 50’s was just what I needed to hear. He’s been through what my little Greta is going through, but as an adult, he can express his needs a little more reasonably and in the typical “adult” manner than Greta can right now. His advice helped me a lot. His kind words to Greta were that she had nothing to be embarrassed about. All she had to do was ask people to slow down a little or go over something again, it’s not a crime to ask.
I thanked him and told him that even Karl and I can forget at times that Greta needs a little extra help here and there, because everything looks so normal on the outside. He wrote back that his wife has the same ordeal. She’s so grateful to have her husband back after he had been through and had to relearn to do that sometimes it’s easy to forget that he still struggles sometimes.
When everything looks “normal” on the outside. It’s easy to forget. It’s easy to forget that there are still things on the inside that trouble us and make us need to ask for a little bit of extra help. The problem is, we get tunnel vision. We see “normal” so much that we aren’t always prepared for the after effects of ADEM to rear their ugly head and we have to slow the train down and adjust. It catches us off guard. Because we are human and it is easy to forget.
Praying that when I’m jarred back to the reality of ADEM and the fact that life will never be “normal” again; that it doesn’t take me quite so long to adjust each time. Perhaps there are others in my community, my circle of friends that also need me to pay attention to when they need a little extra help. There are many out there that need us to be prepared for anything – not easy to forget.
Filed under ADEM, Community
I got an email today asking me to review my application process for the special summer camp we have applied for – regarding Greta’s ADEM. It seems 40 families (it is a family camp) have signed up and they only have room for 30 families – unless some smaller families double in up in the units. In the email, they included a video of introduction to the facility – the Center for Courageous Kids.
Maybe it’s just because I’m a mom. Maybe it is just because Greta is still so young and we are still discovering what all lifelong issues ADEM will leave her to deal with. Whatever the reason, I couldn’t keep my eyes dry while watching that video.
There is a saying that unless you’ve been there, you just can’t understand. That’s what is so great about community. When we get together – we are stronger. When we get together – we find understanding and share ways to cope. I’m looking forward to attending this camp and meeting other ADEM families and sharing stories and practical day to day tips. Each child experiences ADEM differently, depending on where the lesions were located, how large they were and how many there were, as well as how long it took to get properly diagnosed and treated. So many variables, yet at the same time there are still classic ADEM leftovers that almost every patient, especially the children have to deal with.
What would we do without community? What would we do if we always thought we were the only one in the entire world that suffered the way we suffer? Take the time to be open about yourself and what you are going through – whatever it is. Look for support groups or fundraisers that help create awareness or contribute to vital research. You may have a handle on your situation yourself and think you don’t need community. I’m not going to congratulate you. I’m going to tell you that out there is someone who doesn’t have it figured out and they would be thrilled to talk to someone who has been through it and knows some of the ropes.
We need each other. We need community. Just google center for courageous kids and watch their introduction video. It just might change how you feel about community.
Filed under ADEM, Community
So our daughter decides that having a rare in children autoimmune disorder isn’t enough and has to test positive for three food allergies: wheat, egg whites and peanuts. Although some experts say there is a high incidence of false positives in these tests, we are still taking precautions and carefully preparing her food. Peanuts is the easiest one. It is a common allergen and there are already many products proudly boasting they are safe for kids with peanut allergies. Bring on the Almond butter!
The wheat is giving us the most grief. We found a load of bread that was gluten free, but it had egg whites in it. It is a huge chore! Yesterday for lunch, I made grilled cheese sandwiches and potato carrot soup. Greta noticed that her bread looked different from all the other plates of sandwiches. She started to complain and felt all alone. “I don’t like feeling that I’m all alone.” I quickly reassured her that she wasn’t alone. Everyone else in the family can eat cheese, but I can’t. I have Crohn’s Disease and a colon resection to thank for that. As soon as she was reminded that she wasn’t the only one, everything changed.
Who likes to stick out for the wrong reasons? Who likes to be the one that everyone “feels sorry for” because they are so different? But the truth is that most of us have a special need here or there. Some are just more obvious than others. One of the recent trends that I’m learning to follow is bringing awareness to those who suffer in silence. There are many illnesses, diseases, home situations, and so forth that it isn’t always evident just from the outward appearance that a struggle is even taking place.
Because it has to do with that part of the body that a lot of people don’t want to discuss, Crohn’s Disease and similar issues weren’t talked about much. But the truth is: everybody poops! I’m seeing more and more people that are talking about their issues in a productive way. This is a good thing. Why? Until I joined http://www.chronology.com, I didn’t realize there were others out there that experienced pseudo fevers like I did. I didn’t realize there were others out there who went misdiagnosed for years as I had. I found a place that showed me I wasn’t alone.
Most people want that. Even the solitary types want to know there are other solitary types out there, even if they don’t want to meet them. It’s just good to know you aren’t alone. Once parents of children with allergies started banding together, we got more options to offer these kids. When we suffer in silence, nothing gets accomplished to help make a difference. When we take the time to get to know one another and share what is really going on: we will find we are not alone and working together we can effect change. Examples? Now that we know peanuts are a common allergen, there are some elementary schools that have banned peanuts and peanut containing products. There are so many other options out there and people can eat all the peanuts they want at home. The Center for Courageous Kids holds a summer camp each year for children with severe allergies and their families. In fact, that’s all they do, hold summer and family camps for kids with different issues, including asthma, multiple sclerosis and transverse myelitis.
Kids that have been through so much see they aren’t alone. Maybe you need to see you aren’t alone as well. Do a google search and see if there is anyone else out there “like you” and see what you can learn. You just might be part of a miracle of making a difference!
I have a Wii fit system. It’s amazing how this board and all of its balancing mechanisms and electronic programming is able to monitor how well you are doing an exercise and whether or not you are really getting the burn you need. Just to make it more interesting and humiliating, I have the Biggest Loser game to go with it. There’s nothing like having Jillian Michaels screaming at you to quit “phoning it in” and get real with your exercise. Better yet is having Bob Harper and his smug little smile torturing you with intense yoga workouts. Wow!
I also have a cruiser bicycle. It reminds me a lot of the old bicycle that my grandpa repaired and allowed me to use while I was at his house over the summers. My cousin and I would ride and ride and ride. We loved racing down hills and going places where the cars couldn’t go.
I have some exercise goals in mind. First of all, I’m trying to reclaim what Crohn’s Disease has tried to take from me in the last 8 months or so. I’ve had it for nearly 30 years, but the last 8 months have been brutal. I’ve signed up for a beginner’s triathlon for June 2013. My goal is to prove that anyone can do something. I want to show the world, and myself, that Crohn’s Disease doesn’t own me.
Now that the mornings in East Texas are resembling an average day instead of the humid ovens they have been most of the summer, I’m enjoying a bicycle ride in the morning for my exercise. Jillian and Bob aren’t yelling at me, pushing me harder, but I get to see my neighbors and greet them as I ride by. They are going to hold me accountable. Riding past the house that often wins the yard of the month award, I can see if my neighbors have had a successful run or not with the latest landscaping they are working on. As I ride along in my pleasant little tourist town, I’m showing visitors what a quaint and peaceful place this is to live. There is such a connection when I exercise/ride my bike, out in my community.
Besides all the wonderful opportunities for staying connected, I’m also getting a great workout in a way I’ve always loved. You doubt? My husband led out on our ride yesterday morning, being sure to include lots of uphill climbs. I could feel the labored breathing in my chest and at one point I was sure I would vomit if I didn’t get a break. Sorry Wii fit and sorry to Bob and Jillian, but you’ve never pushed me that far. So I think I’ll stick with pushing my limits with bicycling and staying connected to my community. It’s a win-win situation.