Tag Archives: EDS

Awareness Months Matter

During Dysautonomia Awareness month, someone asked me how the awareness month helps me personally. This person wasn’t being snarky or belittling. He just wanted to know what the purpose is. I understand his line of thinking. Sharing a Facebook post will not make me feel better; wearing a tshirt that supports awareness will not pay my medical bills. When faced with the reality of a chronic condition, all the tshirts, Facebook statuses, and Instagram graphics in the world seem inadequate.

However, for many of my chronic illness friends (including myself), awareness is our hope and life line. We’re met daily with not only the challenges of our condition- but also the lack of understanding of others. Don’t get me wrong. I don’t believe the whole world has ganged up on me. Not at all, most people are quite lovely. However, due to the lack of understanding of my condition, I find myself in situations often where a little awareness would go a long way.

Awareness month matters to educate medical professionals.

Remember, Dr. Deficient? ( This guy ) I’m fairly confident that he reads online news, uses social media,  or has idle conversation with people while standing in line at the movies. Why? Because, even if he wasn’t a very understanding doctor for me, I’m assuming he is a human who engages in human activities. What if in the days before I went into his office he had seen several infographics about my disorder? What if he saw an Ehlers Danlos awareness tshirt while he was standing in line? Of course, it’s entirely possible he wouldn’t have noticed or cared, but there is also the chance that could have been a game changer for my medical care.

Awareness month matters to educate friends and family.

I realize I talk a lot about my illness on my blog- because my blog was created to support others who are dealing with the crazy, chronic life as well. In day to day communication, it doesn’t always come up. (Trust me. I’m awkward enough without greeting people by saying, “Hello. I have a rare disease that makes me fall apart sometimes!”) My friends and family learn about my illness through the information I share. How does that help? What if I’m out with a friend and faint or dislocate a hip? He/She will be more likely to know what is happening if they have a basic understanding of my illness.

Awareness month matters to the undiagnosed.

I was diagnosed with Ehlers Danlos Syndrome two days before my 30th birthday. Up until that day, I truly believed that I was less resilient than the general public. I had no clue why I had to fight tears when I walk down stairs, and other people can handle it. I thought I was immature as a young child when writing made my hands cramp until I cried, and no other students my age were crying. I had no idea there was a name for my struggle. I believed ugly words like weak and lazy, because I didn’t have a diagnosis to explain how I felt.

My mom recently shared a post about Ehlers Danlos Syndrome on her own social media. I was touched that she took time to do that. When I asked her about it she said, “I thought of all those years when we didn’t have answers for what was wrong with you, and I knew how much I would have appreciated someone sharing this information with us. Maybe it’ll help someone else.” Good words, Momma. So true.

May marks the awareness month for many conditions. (I’ll be honest. I’m afraid to try listing them, because I know I’ll leave someone out.) If it’s your month, let me encourage you to share information, encouragement, fund raisers, and anything else that you think needs to be said. This is your time of the year to attract attention for your struggle. Make some noise! Spread the word! Your awareness month matters!

Peace, love, and health, friends.

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Sorry, not sorry. Social media is my bestie.

My husband is the ultimate extrovert. Put him in a crowded room and he’ll feed off the energy for days. Me? Well, the very thought of a crowded concert or even a potluck makes me cringe. I love people, but I’m not a person who can work a room. It’s unsettling for me. Add to that the constant fear of brain fog moments, health issues, and general social anxiety, and I’m a hot mess in a crowded room.

This seems to be the lament of many of my chronic illness friends. It’s not that we don’t like people, but rather that being around people is complicated. When you feel bad it’s hard to have the ambition for social engagements. Chronic pain makes it hard to concentrate on the conversation you’re having. And, to be honest, just the general lack of understanding the public has for my (and many others’) invisible illness is unsettling.

Basically, I’m too dang awkward to be in public. Just this morning at church a woman a couple pews in front of me turned around to shake my hand. She was far enough in front of me that she had to lean over the pew between us and still couldn’t reach me. I was sitting while everyone else was standing, because my heart was doing the cha-cha in my chest. In an effort to act like I had decent social skills, I stood up to lean toward her- then stumbled and grabbed the edge of the pew for balance. Then I burst out with a barely intelligible line- “I’m sorry. I don’t stand good.” WHAT?!? Of all the possible things I could have said, why did I say that? Seriously, there’s never an excuse for bad grammar. I should be kept in a cage.

However, on Facebook or Instagram, I’m a completely functional adult. Given the time to think about what I’m saying before I say it, I make sense, and I’m typically grammatically correct. (Full disclosure- I still rely on autocorrect for spelling.) With iPhone edits and social media filters, I’m way more cute and graceful. I need social media to be a normal person. I realize that you’re probably thinking, “You don’t have to be perfect. You want to make friends based on who you are- not a contrived online profile.” I agree with you. However, when illness turns your body into something you don’t even recognize anymore, I think it’s fair to find your confidence for entering the public realm wherever you can find it- even if it’s in the unrealistic world of social media. It’s helped me find who I am again, so I thought I’d share it’s virtues with you.

  1. I’ve made friends. It’s true. When I have exciting news, one of the first places I want to share my news is one of my chronic illness support groups. You see, at one point I had work friends, but the disabled life doesn’t exactly afford many of those. I met people for lunch and coffee, but that’s a little harder to do now. There are weeks that go by, and I don’t speak to any humans in person other than Joe and the lady who gives my allergy shots. However, my online friends are always around, and if they’re not they will be eventually. I’ve had the opportunity to meet people who live a life very similar to mine. I can share victories that don’t seem like victories to my healthier friends. My chronic illness friends understand when I post, “Guess who took a shower, fixed their hair, went to lunch, and unloaded the dishwasher today? This girl!” Normal people would probably not realize this is a huge achievement. My chronic illness friends on social media understand that this is a big day!
  2. I’ve found a way to be a part of something that matters.  As my health has changed, I’ve been less capable of doing a lot of the things I used to do. I can’t volunteer to tutor students or teach Sunday school. My body isn’t very reliable. For a while, I felt like I no longer had a purpose or a way to contribute to the good in the world. However, I learned that the social media world is filled with lonely and isolated people- like me. I can’t be there physically, but I can listen. I can offer prayers and hope and encouragement. Online support groups have been a fantastic outlet and a great way to try helping others rather than focusing on my own problems.
  3. Social media has an off switch (and it’s available 24/7 too!). If I have a migraine or a particularly symptomatic day, I have the option of not looking at social media. Instead of being online when I feel sick and grumpy, I can make the choice to stay away. Of course, you can make that same decision in real life, but it’s more difficult. Real life people involve commitments and explanations. Online interaction happens when it happens. There’s always someone there when you’re ready.

Is social media the perfect answer to all social interaction? Of course, not. It’s important to make friends who can actually be there physically when you need someone. However, if you can’t handle all that yet, social media is an awesome place to start. I’m unapologetically in love with Facebook and Instagram. (Twitter is just not my jam.) Does that mean that I’m one of those people that’s tied to their phone screen a lot of the time? Yes, but it’s only taking away from my napping life or doctor’s office waiting time. I’m okay with that. This life is difficult enough, and if an online support group, online friends, or anything else makes life easier for you- I say do it. Social media can be your bestie too. She’s big enough for all of us, and I promise not to be jealous.

 

Peace, love, and health, friends.

Taking a Chronic Illness to the Gym- the loftiest of endeavors

I hadn’t been to the gym in a while until today. A few weeks ago my body went all “Let’s throw a fit and make Tiffany black out and have chest pain,” so it slowed down my work out flow to say the least. Today I made it back. I’m doing a very amended work out (one hour on the recumbent bike with no resistance- yeah, I know. I’m a beast.), but I’m trying. I figure as long as I’m still trying, Joe isn’t married to a potato, and that’s a positive thing. (I think- I mean the guy really likes potatoes). Since it was my first day back, I decided to record my thoughts- not because they were especially brilliant, but because I knew my crazy, chronic family could relate.

Sitting in the car- I’m not going in. Everyone looks skinny and healthy. Holy moly, that girl is lifting some serious weight. (I am too, but only when I get myself out of the car . . .) Is the whole stinkin town training for a marathon I know nothing about? Do I have any chips in my car? That seems like a better decision at this point.

Walking in the gym- Don’t let the man who works here notice when I scan my check-in card that I haven’t been here in close to a month. Dang it. He totally knows. He said, “It’s nice to see you.” What he’s really saying is, “It’s nice how you drug your lazy self back in here.” (Actually, no. He’s so nice that he would never say such a thing, but the guilt is real.)

Beginning the work out- Where do I start? What is everyone else doing? Oh, yeah, I can’t do that. Abs. I can work on abs. I think somewhere along the way a doctor told me that working on core stability would help my symptoms- or maybe I heard that on an infomercial. Sigh. I have no clue what I’m doing. The ab machine looks least likely to dislocate something, so I’ll do that.

The actual work out- Ouch. Ouch. Should working abs make your lower back feel like it’s going to split open? Is that normal? It’s probably normal. No one else is crying. I’m not going to cry either. Is that a tear? Nope! Just sweat! #killingit A man just asked me if he could work through. What does that even mean? Is he asking if he can work through his problems? I certainly hope he can. Should I offer to pray for him? This gym thing totally confuses me.

I’m moving on to the recumbent bike. It’s totally not made for the under 5 foot crowd, but if I pedal with my tip toes it’ll work. Holy cow. Is that girl still lifting weight? There’s no way she weighs as much as the weight she’s lifting. I must find out her secret. Oh wait, her secret is probably joints that don’t dislocate from simple tasks. Maybe I’ll ask her about that. I won’t. That would break my cardinal rule of gym attendance- don’t speak or make eye contact. They’ll never realize what a hot mess I am if I just don’t speak.

How long have I been on this bike? I’m only pedaling an hour. Darn it. It’s been 6 minutes. Why doesn’t time go by this slowly when I’m drinking coffee and binge watching One Tree Hill? Oh yeah! I can watch OTH while I pedal. No, I can’t. Someone is sitting next to me talking loudly. He’s talking about how nice it would be to be 30 again. Maybe so, dude, but 31 is a struggle right now.

The end! The beautiful end! I made it! I survived an entire hour, and I only stopped once to move a kneecap back into place. (Tricky little booger) I didn’t black out, double over in chest pain, or have any dislocations that I couldn’t handle on my own. YES!!

It can’t be a coincidence that my gym is located next to a Sonic. Time for a milk shake!

Peace, love, and health, friends.

Chronic Christmas Craziness and Other Communicable Diseases

Confession time, friends. Yesterday, I had a full Clark Griswald-esque Christmas meltdown. You know that scene from the movie when he finds out his long awaited Christmas bonus is nothing more than a membership to a jam of the month club? (Which is a pretty dang cool gift, if you ask me.) He proceeds to totally have a total freak out of epic proportions . . . yeah, that was me. Now, before you label me a Scrooge and believe that I need to be visited by some of Charles Dickens’ ghosts, let me explain.

Holidays are tough for the chronically ill- really tough. For me, I feel like holiday time exposes all my flaws. The rest of the year I can hide that my house isn’t always neat and organized. I can keep you from noticing that I don’t have the energy to wash my hair (or even shower sometimes) more than every other day. My cooking short cuts (I’ve got to make a blog about that soon!) can fly under the radar. But at Christmastime, you’re going to see these things. When I sit around with family members chatting about the past year, you’re going to notice that I start lying down or leaning over- because for some reason I can’t sit up for long without my ribs moving out of place. You’re going to see that my Christmas cooking came from Kroger (grocery store, non-US, friends!). And, if you look closely, you might even notice that Joe has to open bottles and cans for me, because my hands won’t cooperate lately.

Although these are all parts of my daily reality, Christmas makes me feel much more exposed. Don’t get me wrong- my family is fantastic. I can’t think of a single member that would tease me (well, they might good-naturedly tease me- but NEVER hurtfully) for the things I cannot do. I’m very blessed to have a group of people who love me and do not think less of me when I just CAN’T do something. The problem lies in that I hate looking pathetic. I hate looking like that hot mess that just can’t get it together. There’s nothing more dehumanizing than being pitied.

So, anyway, back to last night’s meltdown- here’s how it went down. I was trying to cook real food- things that didn’t come pre-made from Kroger. In the process, I cut my finger, dislocated my shoulder and a finger, dropped essentially everything I touched, and somehow my blender full of boiling strawberry puree exploded. (FYI- If you’re covered in boiling hot strawberry puree and you yell for your spouse to come help you, FIRST explain to him that the red super-mess is NOT blood. The poor guy was preparing to apply pressure!) Somewhere during all of this, in a moment of panic (and chest pain that’s been haunting me for a couple days) I sat down on the kitchen floor and wailed, “I think I need to CRYYYYYY!!”

Poor Joe. He’s been through these meltdowns enough to know the protocol. He brought me a chair and a Cranberry Sprite Zero (yum!). He reminded me that everything that we were preparing for was fun- not something to freak out over. He even reminded me that we are celebrating with people that we love (and even like) who accept us exactly the way we are. He’s right. I just got caught up in the craziness of wanting everything to be perfect.

Here’s the truth. I will never have a Pinterest-perfect Christmas. My Christmas cards will be store bought, and my handwriting will probably be illegible after the first few. My gifts will always come from whichever store looks the least crowded- or better yet, Amazon. I can’t remember to buy things like bows for gift boxes or name tags. Joe did the wrapping- it’s not exactly his greatest gift in life. The gifts we bring are lumpy; the paper is ripped and patched, and the recipients’ names are written on the side with Sharpie. To be honest, Im not even sure if I put the correct name on gifts. So it’s possible there will be a gift shuffle at the end because I have given my brother the Princess castle intended for my 2 year old niece.

But . . . post-Griswald-esque meltdown, I’ve decided I’m okay with the imperfections. I may not feel fantastic sometimes; I’ll excuse myself and rest. I may not be able to get food on the table on time (you know, that food I just have to re-heat because I ordered it from Kroger), but we can just eat later. I might lie down while I visit with my family; I’m sure they’ve seen me do stranger things. I’m going to relax as best I can and enjoy this crazy, chronic Christmas.

So, um, could all of you remind me of this over the next few days?

Merry Christmas, chronic illness family. May your heart be filled with the hope and joy of this very special (and sometimes crazy) season.

Peace, love, and health friends.