Tag Archives: Campbellsville

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.

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Long Jump Champ- Able to Jump to the Worst Possible Conclusion in a Single Bound

One evening a few weeks ago I noticed an itchy sensation on my chest. Given that I’m a female, it was far from appropriate to whip my shirt off to investigate, so I ignored the problem until time to change for bed. Upon removing my t-shirt I noticed a red spot with a black “something” in the center. I swiped at the “something” to knock it off, but it appeared to have latched on to me. So . . . I panicked. ‘Oh my goodness! It’s a tick! There’s a tick on me! I have a red circle around the bite. I obviously have Lyme Disesase! Or maybe it’s Rocky Mountain Spotted Fever (or Spotty Mountain Rocket Fever?)? Could it be both? I think I feel achy. Maybe a little feverish?’ During my meltdown I moved a little closer to a mirror to further investigate my newfound parasite. Upon closer inspection, I realized the tick attack was actually nothing more than a wayward watermelon seed that had fallen down my shirt while snacking.

I get it. I’m ridiculous. Normal people don’t automatically assume that a somewhat itchy spot is a tick rather than another clumsy eating venture. Normal people see a spot, investigate the spot, and think, “My, I’m quite the enthusiastic eater of watermelon.” Not me. I envision doctors’ appointments, IV antibiotics, and new symptoms. But at this point, I don’t even apologize for my ridiculousness. “Normal people” expect logical outcomes to things that happen to their bodies. If they get sick, they get better. For those of us living with chronic illness, life isn’t always that simple and predictable. We know that our bodies can and probably will betray us. “Simple” illnesses are never actually very simple.

I haven’t always been a negative person, and in some ways I still don’t feel like I am. I just feel an overwhelming need to be prepared for whatever my body throws at me next. After my body had a few totally unexpected meltdowns, I developed a little bit of anxiety about illness and the possibility for illness. I’ve developed a few methods of coping that keep me from absolutely becoming consumed with fear when something does go wrong. I’ll share them with you in hopes that they help someone else, and I definitely want to know if you have any secrets to handling your own anxieties about illness.

1. Make a plan.
It is within my realm of normal to run a fever. If I’m tired, I’m feverish. If I have a headache, I’m feverish. If anything stresses my body in the least, there’s a good chance I’ll have a low grade fever (and NEED ice cream or grape slushes to cope). However, if the fever lingers for a while I start to worry. I think that maybe I have an infection. Or maybe it’s an autoimmune flare up? Or . . . maybe it’s just one of those weird things that I have to accept that it’s part of my body. To keep myself from going to the doctor every single time I have a fever (which would have been daily for a few years), I set parameters. If my fever goes above a certain number (normally 101), THEN I’ll call my doctor. If it doesn’t, I’ll accept it as part of my normal. If I have a plan in place of what I will do if something out of the ordinary happens, then I am better able to handle the ordinary things that happen sometimes and cause concern.

2. Find a distraction.
Once you have a plan, you’re free to distract yourself from your woes unless your symptoms get out of control. My husband, Joe, is better at this than I am. He’s a pro at finding something to do (a fun night out, a silly movie via Netflix, a late night conversation to scheme and dream about our next vacation) to distract me or at least make difficult times less terrible. It’s okay to NOT think about what is wrong with you for a while. This is difficult, of course, because pain typically demands to be felt, but it is completely acceptable to take a break from worrying and think about something less consuming.

Joe and I are strong believers in the “spoon full of sugar” method to life (Cue Mary Poppins singing . . .). No matter what we are facing, a doctor’s appointment, test results, surgery, or even just a day of feeling rough, we try to soften the blow. If we go out of town for a doctor’s appointment, we try to have a fun night beforehand to enjoy whatever the town has to offer. (Thank goodness most of my doctors are in Nashville, so there’s plenty to do!) Recently on the night before a surgical procedure that I was really nervous about, we took a carriage ride through downtown Nashville and spent the evening listening to one of our favorite bands with a close friend. It’s hard to remember that I’m worried when I’m waving at traffic from a Cinderella worthy carriage on the streets of Music City, USA.

3. Avoid Dr. Google.
If Google charged a co-pay for its medical advice, I would be broke. I am guilty of googling my symptoms, and I know that is an excellent way to make myself overreact. No matter what symptoms you look up, Google will let you know that it’s possibly cancer, or a brain tumor, or maybe Ebola. While the Internet is great for empowering patients, helping them connect and learn more about their illness, and making them an advocate and partner in their own medical care, we also have to realize it also has a lot of worst case scenarios listed. If you’re already concerned about a symptom, bypass Google and call your doctor’s office, nurse’s hotline, or on-call doctor. Google won’t tell you how unlikely it is that you have the worst case scenario illness; it will only tell you that you could have it. That’s an incredibly bad idea if you’re already riddled with anxiety.

Obviously, if I had gone through this list BEFORE I had my watermelon seed/ tick bite situation, I could have saved myself some stress induced tachycardia. I get it. It’s easy to jump to the worst possible conclusion. Heck, some of my best exercise comes from jumping to conclusions (Sorry. Horrible pun.). But . . . let’s try to take a deep breath, develop a plan of action, and distract ourselves with something more fun when possible. May each of you have low stress, worry free days!

Peace, love, and health.

It’s my Sick-iversary! Please send balloons and cake! Plus, a fun announcement.

Four years ago, this happened, and it began this entire crazy, chronic journey that I have been experiencing. In terms of adventures, it has been one that I could have never fathomed happening to me. But life happens. You deal with it, and try to remain as normal and unscathed as humanly possible. I’ve learned a lot, and cried a lot, and lost a lot, and gained a lot during this journey. And, although I would cure myself in a heartbeat if given the choice, I accept what has happened to me, and I like the person I am becoming.

For a long time after becoming sick, I bemoaned the unfulfilled dreams in my life. I’m super dramatic, so I truly grieved missing experiences that I probably would have never wanted to have if I had been super healthy. “Why me? Why did I have to give up my career? Why did I have to give up my dream of being a mother? Why did I have to give up my dream of being the first teacher to teach a middle school class in space????” (Okay, that last one wasn’t my dream, but if it had been . . . well, I’m pretty sure I would have had to give it up. Honestly, who wants pre-teens in space anyway?) What I have learned, however, is that when one dream is taken away, we are blessed with new dreams and passions to fill its place.

I would never in a zillion years have believed I had enough to say to start a blog, but here it is. (It’s only fair that I admit that I have PLENTY to say- just ask Joe-, but it’s not typically anything any sane person would want to hear!) The blog has made me dream even bigger . . . I have the secret dream (okay, scratch that, it’s not a secret any more) of some day writing a book that would encourage (and provide chuckles for) chronically ill patients like me. Will it ever happen? Who knows? But I am glad that I have reached a place in my life where I can see hope and possibility in the midst of the devastation of illness.

New dreams come from new passions. From the time I was 12-13ish, I wanted to spend my life working with children. I truly love kids. They’re hilarious and awkward and small and smelly (so far I’ve described myself, I think) and just so very fun. But . . . life happened, and chronic illness happened. Not only am I no longer able to teach, I’m truly no longer capable of working with groups of children. I mean, who wants a Vacation Bible School teacher, or cheerleading coach, or church nursery worker that is afraid to touch children for fear that her shoulder or hip will dislocate, and she’ll drop a child or fall over and crush him/her? I’ve become a bit of a liability. What is amazing, however, is I don’t really miss working with children like I thought I would. Don’t get me wrong. I still love kids, and if you sit next to me in a restaurant I WILL try to make friends with your kids. (Oh yeah, and if you have a baby, I’ll befriend you just in hope that your baby will wave at me or talk sweet baby gibberish to me.)

I have a new passion, however, for a group that gets far less attention than children- the chronically ill. (I realize I basically just said, “I love people like ME!” but stay with me for a minute.) My own chronic illness journey made me realize what a lonely and frightening voyage it can be. At the hardest and scariest time of my illness, I would sometimes go weeks with no one to talk to but my husband and my mom. I don’t believe that everyone else was intentionally ignoring me, but a sick friend that just doesn’t get better is awkward. If you have a friend that has surgery, it’s easy to know what to do. Check on them while they’re in the hospital; bring them food once they’re home; maybe even offer to help them around the house until they’re better. Because, you know, they will heal and get better eventually. With chronically ill friends, well, we’re just stuck in a cycle of sickness where there are good days and bad days, but all the days are health focused. Let’s be honest, we’re a bit of a drag at times.

But . . . I think we’re awesome. We fight a battle every day, and we know that the next day is going to be a new battle. We pretend we feel fine (even though everything hurts) for other’s comfort, and we do our best to hold it all together. Eventually, it’s my dream to host an actual real live group of chronic illness sufferers. I’m not sure I love the term “support group,” but it’s the best I’ve got for now. (Oh brain fog, why must you torture me?) Ultimately, I want to encourage others who suffer from chronic illness (physical illness, mental illness, or whatever plagues you). I want to check on them after scary doctor’s appointments. I want to encourage them to find ways to help others. I want to laugh together at absurdity that is this crazy, chronic life.

So . . . for now, there’s not a real, physical group, because my crazy, chronic family is spread all over the world. But I DO want to know you better and give you a place to connect and encourage. Here’s the fun announcement (It’s been a rough few days. I apologize if this is a sad excuse for “fun.”), there’s a Crazy, Chronic Life facebook page. I moderate the page, but it’s not MY page. It’s all of ours. Feel free to join by clicking the link below.

Fun Facebook Group

I am so excited to meet more of you. Please know that each of you has made this sick blogger from Kentucky’s dreams seem more possible.

Peace, love, and health.

Now that I’ve conquered chronic illness . . . I’m going to Disney World!

That’s right, friends, I said “conquered chronic illness.” Okay, maybe I haven’t “conquered” it, but I have at least taught chronic illness a few manners. Traveling with chronic illness is a bit like traveling with a toddler. Some days it behaves wonderfully (you know, like the cute toddler in a restaurant that is engaged in the conversation and not having a meltdown?). Other days, chronic illness spirals out of control into physical and emotional chaos (imagine that same kid kicking and screaming in the aisle of the grocery store). So, basically, I can say that I have conquered chronic illness with the same amount of assurance a parent can say that their 3 year old will definitely behave.

But . . . I have way better things to do than wonder what curve ball my body is going to throw next, so I’m going to Disney World. That means this hot mess express will be chugging through 2 airports, 2 flights, and 4 Disney parks within the next 6 days. I’ll have Joe (who is totally used to my misbehaving illness) and Snooki (the wheelchair- not the reality tv star), so it’s not exactly like I’m undertaking this adventure without help. However, I still have a contingency plan just in case a hip dislocates, or my blood pressure won’t cooperate, or my stomach forgets how to digest food. Basically I’m going to Disney World with books, notepads/ pens, logic puzzles, magazines,  . . . – anything to keep me entertained if my body decides that the entertainment provided is just too much to handle.

Four years ago (this coming June), Joe and I went on our honeymoon in Disney World. It was so incredibly fun, and we were making plans to return before we even left. Then, life happened; chronic illness happened; no longer working happened, and basically this whole crazy, chronic life thing exploded. I remember discussing with Joe that I would probably never be able to go back to Disney World. The first time we went we did everything. We tried every food and every ride. We stayed out late and got up early (okay, not super early but before lunch). And we walked, and walked, and walked in the blistering Florida sun.

Being entirely realistic, that will probably never happen again. Our first trip to Disney together will always be special, but I don’t actually believe my health will ever allow me to vacation with that much intensity ever again. When I believed that we would never go to Disney World again, it’s because I couldn’t imagine myself ever becoming someone who needed accommodations. Obviously that attitude only hurt me and my marriage. The rest of the world truly couldn’t care less if I enjoy Disney World on my feet or via Snooki. However, it’s really important to Joe and I that we recreate that magical first week of our marriage- regardless of if he’s pushing me around or not.

So, in honor of our “second honeymoon,” here are a few ways Disney World will be different this time than it was on our first honeymoon.

Snooki gets to join us. Snooki is my wheelchair, and she’s super fabulous. She tends to get lots of attention and ridiculous situations normally accompany her trips into public. Snooki is looking especially wonderful right now, because I just installed a cup holder on her. Now I can roll and sip Gatorade. That’s right, dehydration, you lose!

Opinions. So many opinions. Because Joe and I have “Disney-ed” together before, we know what we want to do. We have spent the past 3 months making and changing dinner and Fastpass reservations, choosing lunch and hydrations spots, and figuring out the best times to ride certain rides.We both have favorite attractions. (Thank goodness we mostly agree about the most important things to do and see first. If not, this trip could get tense quickly!)

There are breaks scheduled. Even with Snooki joining us, it’s probably not wise to spend hours baking in the hot sun (not to mention Joe will be pushing me most of the time, so he’ll probably need a break too).We’ve scheduled breaks during the hottest part of the day to avoid blistering sun and the cranky people that need afternoon naps as much as I do.

And . . .

Best of all . . .

We have matching t-shirts! It’s true. Joe and I have matching Disney t-shirts for every day of our trip! I know it sounds silly, and it is. But if you can’t be silly in Disney World, where can you? Besides, this will make it way easier to find my Snooki pusher (aka my husband), if he wanders.

Crazy, chronic lives are tough. Marriage is hard work. If there is a way to have fun and enjoy life together, make it happen.  I’m guessing that a week from now I will have stories of Snooki situations, too many souvenirs, and some serious exhaustion, but I will also have done something that I believed impossible at the beginning of this whole crazy chronic journey.

Peace, love, and health friends.

Developing Selective Hearing (and other priceless chronic illness skills)

Words can hurt- maybe not quite as much as chronic illness, but they can definitely hurt. I was in a situation recently where a well- meaning person said something completely hurtful about how I manage my illness . . . and they were just making conversation. This person did not mean to hurtful or judgmental; they truly felt that their comments were helpful. They weren’t . . . at all. I realized there were a few ways I could handle the situation; I could get my feelings hurt (and maybe say something equally hurtful in retaliation) or I could trust that the person was not trying to be hurtful and gently educate about the nature of chronic illness. Obviously, the latter was the better choice, but it isn’t always easy to treat others with grace and kindness . . . especially if you feel misunderstood.

In the past few weeks alone, I’ve had people comment on me not working (when I look “completely fine”). I’ve had people tease my husband about not standing at an event when he was sitting with me because I couldn’t stand long enough to participate (Don’t worry. It wasn’t the national anthem or anything that was worth the health sacrifice.). Over and over, I have felt like I had to bite my tongue to keep from lashing out at people who truly don’t understand. I don’t want to be so hyper-sensitive to what everyone says that I cannot be around non- chronic illness people without feeling hurt or judged. I realize that not everyone can understand what I deal with, because they haven’t had the same set of circumstances. I’m glad they don’t understand; if they did, that would mean they’re stuck on this journey too. So, in an effort to remain a social being in the world of well people, I have decided to develop selective hearing. I don’t mean the type of selective hearing developed by husbands (“What? You wanted me to put my dishes in the dishwasher? You never told me.”), but rather, a type of selective hearing that will allow us to hear what people mean instead of the crazy (or hurtful) things people say.

What people say: You don’t look sick.

What I hear: You must not be sick. You look fine.

What I will choose to hear: Holy cow! You look incredible! I don’t know how you continue to look so fabulous when you feel so terrible!

(Yes, I realize I’m stretching the meaning a little. But, if I’m going to alter what others are saying, why can’t I give myself a little confidence boost in the process?)

What people say: Have you tried . . . . (insert diet, supplement, miracle pill, Billy Bob’s Magic Elixir, etc.)?

What I hear: If you really wanted to feel better, you would try whatever goods I’m peddling or method I’m supporting.

What I will choose to hear: I truly want you to feel better, and I’m suggesting thing in hopes that something would help you.

What people say: Have your doctors still not figured out what is wrong with you?

What I hear: If your doctors really knew what was wrong with you, you would be getting better. Doctors fix sick people. You should get better doctors.

What I will choose to hear: I regret that this is a chronic condition with no quick fix.

What people say: Wow, you live like a little old woman.

What I hear: Wow, you live like a little old woman.

What I will choose to hear: Wow! You look incredible (and not at all old!) while battling a chronic illness that has reduced your ability to live like the rest of us.

(Again, probably a stretch, but this is all taking place in my head. I can embellish!)

To my chronic illness friends, there are some people that are just jerks. Avoid them. People who say things with the intention to hurt you aren’t worth your time. Don’t invest what precious little energy you have on those people. The people in your life who truly mean well but say insensitive things, try to give them some grace. They can’t understand, and we don’t want them to ever experience this in order to empathize. It’s okay to gently educate. I’ve lost count of how many times I’ve had to say, “My illness is chronic, so I deal with it every day. Some days are better than others, though. Thanks for checking on me.” It’s okay to gently correct- “It isn’t my doctors’ fault that I am not better. I have an illness that does not have a cure, so all my doctors can do is manage my symptoms.” It’s also okay to just change the subject. “You know, I get tired of talking about being sick. Let’s talk about something that really matters- ‘Is that dress black and blue or is it really gold and white?’” (If you missed “the dress” internet phenomenon, I don’t advise looking for it.) Most of all, don’t burn bridges with the people that mean well. If a person cares enough to bring up your illness, they might be worth keeping around- even if they are a little clueless.

To my non-chronic illness friends, I’m sorry that I’m sensitive. I’m sorry that I misconstrue thing you say into something hurtful. Please keep talking to me anyway. I would rather you say a hundred accidentally offensive things to me than give up on our friendship. Thanks for trying.

Now for the fun part, chronic illness friends, what question or comment do you hear that drives you crazy? If so, share it in the comments.

Peace, love ,and health friends.