Posts Tagged ‘Conditions and Diseases’

What I Really Mean to Say – Guest Post

I want to thank GaiaMom for the opportunity to share a guest post at her blog.  I know that this is topic that many of you living with chronic conditions can relate to. 

 
FineWhat I Really Mean to Say

Living with chronic illness and pain is something that isn’t easily understood by people who are not going through the same thing.  Moreover, the effects of illness are an emotional and personal daily battle.

Most people have this notion that if you look fine, you are feeling good or having a good health day.  Many also don’t realize that even when we say we are fine, we really are not.  At times when I say I am okay, I really wish I could share with people who don’t understand my ordeal how chronic illness and pain truly affect my life.

Every now and then, when I say I am okay or I am fine, I really mean to say:

(1) I hurt more than I can effectively express. The physical part is often easier than the emotional part. I have people in my life who don’t believe in the extent of my sickness and pain so I keep how I am actually feeling to myself and experience has given me many reasons to do so. I have had people who I once called friends and loved ones who have walked away because my being sick was too inconvenient for them. While I have learned that their actions had more to do with them than anything I did, it still saddens me because I would have been there for them.

I don’t have a lot of emotional support so I seek help therapy and I look for solace in prayer and in the things and the people that I love.  These things have allowed me to a stronger person – both in conviction and in the ability to see past my limitations.  So, yes I hurt both physically and emotionally but I have found strength I never thought I had.

(2) I am scared. I have read up on about Rheumatoid Arthritis (RA) and Fibromyalgia (FM). I know there is no cure for either and I don’t see remission in my future. I also know that I will never return to perfect health. I worry about what the future holds and where I will be in ten years or twenty years. I am only 37 so I have a long life with RA and FM. I worry about how I will take care of myself if things get worse and who will take care of my kids. I have valid questions but I know that these questions don’t have concrete answers.

Taking life one day at a time is all I can do and that is scary in of itself. I will never be my former self but I am working on maintaining some level of sanity when it comes to my health. While I am scared, I try to focus on the here and now so that I can make the best of my life with chronic illness.

(3) Life is just not fair. I am not always able to make plans because I don’t know if I will be able to follow through. I don’t know what the future holds because I have to take life as it comes. I can only be hopeful and I am. Chronic illness has taken a lot from me but I have taken a lot back.

No one said life was fair but it is worth living.  While I truly believe that, I just sometimes want to vent and say that life just isn’t fair.

(4) It is not my fault. Being sick is not my fault but sometimes I feel like it is. I worked hard at every aspect of my personal life and professional life before illness and even harder after illness. I am a good parent and my kids are turning out just fine but sometimes I feel guilty that they can’t have the parent that I wish they had. I was a faithful and loving spouse but my spouse wasn’t.  As a result, my marriage ended and while I know that had nothing to do with chronic illness, it happened after I was diagnosed and sometimes, it makes me second guess myself. I have been a successful employee and I have been a great volunteer in the community. I am a patient advocate and I am good at what I do. I have accomplished so many things despite and with chronic illness.

What went wrong – my getting sick – that wasn’t my fault and the bad things that happened after weren’t my fault either. All the good things were due to my hard work.  Nonetheless, if I could I have protected my health, I would have done everything in my power to make sure I stayed healthy but I couldn’t.  Further, I had no control of the awful things that happened afterwards. That just goes back to life simply not being fair. So, I didn’t mean to get sick – I really didn’t – that’s all.

Right now, I am feeling better than I have been in a long time – both physically and emotionally. Sometimes, I actually feel fine when I say I am and other times, I am not fine at all. When I am not feeling well, I have things to say.  Yet, it is not always easy to say them.

Thank you for taking the time read my post. I hope that you will check out my blog, Living Life As I See Fit.  -Lana

Thank you to Lana for offering this guest post swap.  I’ve written a piece, When in Doubt, for her fantastic blog. Please check out it out HERE . – Malia

You don’t look sick

pain-faces-web

Recently my pain clinic posted a video asking patients how they want their lives to be remembered, it seems we have choice between “she was such a kind person, but oh, how she suffered,” and  “she lived her life to the fullest!” I guess the answer is supposed to be #2, all made possible by the clinic’s amazing treatment plan. Don’t I wish the answer was that simple, what kind of idiot chooses answer #1?

It is hard for people to know how to approach me. One of the most common compliments I get is “you don’t look sick!” I suspect they are scrutinizing me; trying to connect the person I am here in my blog with the person they see everyday running around with my kids. I’m not sure what a person with chronic pain looks like, maybe those faces on the pain scale? You have to watch pretty carefully to catch my “tell.” My weekend looks just like anyone’s: my husband works on Saturday and I take the girls to swimming lessons, shopping, errand running; Sunday is church and some weekend fun at the zoo or park. We love our family movie nights at home, or a dinner splurge out on the town. There isn’t time for illness, so I do subtle things to make life possible: like taking meds though out the day to keep the pain and nausea at a reasonable level (what a concept); I use a stroller for my little one and her daddy carries her more than I do; I sleep-in when I get the chance, leaning on my remarkable husband to wake with the girls; I am beyond exhausted at the end of the day, far more than I should be. But, most days, I’d rather end it in absolute collapse, than spend it on the couch waiting for my life to return.

It is easy to discount my pain by conceding that if you can’t see it, it doesn’t really exist. I further facilitate that notion by living, for the most part, as though it doesn’t exist — it is just easier on relationships.

I had an officemate who would notice a tell I wasn’t even aware of: I would hold my breath at my desk when my pain was ratcheting-up. She would notice that I wasn’t breathing and say something simple like, “it must be bad today.” I am glad, and proud in many ways, that I do not look sick, however, the unassuming way she acknowledged my illness was such an unusual kindness. It made it easier for me to keep on pushing, just because someone acknowledged what was really happening to me.

If I have learned anything throughout all of this, it is that we need to be better at acknowledging each other’s pain, without judgement or comparison. So, I guess my answer to the clinic’s question is: she lived life to the fullest, because she had love and support all around her.

7 Januarys

JanuaryYou remember that thing in middle school (I assume it still happens), where a kid is rushing down the hallway, her arms full of books and another a-hole kid sticks his foot out, sending the first kid flying to the ground, stuff scattering all over the floor? That has been 2013 for me so far.

I spend my holiday vacation gathering up enthusiasm for the new year. The nausea meds were working and 2013 was going to be IT! I was already planning the tattoo I would get to celebrate when the pain finally vacated. January was the month that my Doctor would finalize my diagnosis and schedule the cure.

I just had to fail a couple of tests first. I began with another MRI. Did you know that 1 in 100,000 people are allergic to the contrast they use to day-glow your insides? Turns out, I am one of the lucky ones. Not going to go into great detail about what happened in that tube, nobody needs to relive that. Test two was an endoscopy (scope down your throat to view your insides & take pictures), they threw in some secretion to really piss-off my pancreas.

The attending Doc woke me from my sedation haze to tell me that everything looked great, “absolutely fine” he says smiling at me. I could barely speak, I think I nodded. Lucy just yanked the football away, again. I lay there, on the ground, for a day and a half.

Figuratively, of course. My body got up, put on my winter gear and hiked back to the car with my family. I crawled onto my couch with my girls, cried with my husband, and took an extra day home to comprehend how I would revive the part of me that makes the hope.

My girls are magic

My girls are magic.

I have proof by way of illustration: My pain has decided to double in the last week for no apparent reason (really must figure out who has my voodoo doll).  I came home from work a grumpy mess, extremely self-loathing and unhappy that my husband had to leave for work instantaneously.

Seeing as I’d taken all of the pain pills allowed, I self-medicated with a piece of leftover pumpkin pie – which my sweetly smiling 15-month-old ate most of, who can resist those big blues? She then insisted I sit on the floor with her to play Little People, while her big sis did her practice-spelling test at the kitchen table.  I grabbed a couple of pillows and hit the carpet.  She proceeded to pull all of the plastic animals out of the toy barn and pile them on top of me, while making the appropriate animal sounds.  Then she tried to shove every one of them in my mouth or up my nose. We were both giggling and it broke into an every-girl-for-herself tickle-slash-kiss-every-part-of-her-face fight. For 15 minutes she did what my Doctors cannot, what my meds cannot, what I cannot do myself; she made my pain disappear.

Magic.

At Least it isn’t Cancer

Friend: How is all of your health stuff going, have they figured it out yet?Red 3D Cells

Me: I explain how I am chasing another diagnosis with new tests, trying to sound positive about the potential of having my pancreas removed, or some other super-fun procedure.

Friend: Well, at least it isn’t cancer!

How does one respond to that? Yes, cancer is a monster of a disease that can ultimately kill you. No, I do not wish chemo on anyone. And, yes, the people I know who have fought or are fighting that demon are super-heroes in my eyes. I realize that this friend is trying to make me (or them-self) feel better about my completely depressing health situation; it comes from a good place. But I have no idea how to respond.

If I say, “Yes! Cancer would really suck!” we can all just move the conversation along to what we are doing for the holidays, or something equally pleasant. And that is what I usually do, because I am not a masochist and I’d like to be invited to lunch again. But this quietly denies the power of my own disease in some way, the reality of my life. If it isn’t cancer, it really can’t be that grim, right?

There isn’t any purpose in playing compare the malady. Everyone is fighting his or her own great battle. But I would be lying if I said I haven’t considered whether or not I would trade my ailment for a cancer diagnosis, you can’t help it when people unfailingly reference it. Some days I do wish I could trade my near constant nausea and pain with a definitive chemo treatment. I wish I had an illness people had heard of, had a healthy respect for, because I am weary of trying to explain it in a way that fits our world’s short attention span. I face the fact that this thing might slay me everyday. Even worse, it might just suck every last bit of marrow from my miraculous life over the next 40 years. And, ironically, it often causes the big C.

I actually have very little interest in mulling over every gory detail at lunch. I want to laugh and talk about my kids. I deeply appreciate your concerned inquiries and it really is just enough that you asked, that you recognized the darkness for a moment. Please know, that simple act is enough, you don’t have say something to make me feel better. I can see, just by looking into your eyes, that you wish it were so.

Desperately seeking Cher

I’ve become a reoccurring Saturday Night Live character. And not a fun one like drunk sorority girl, someone more akin to Rachel Dratch’s Debbie Downer. The worst part is that I am aware of it – I’ve started to hate talking to myself. 

I’m sure you can relate on a different level. Imagine you have a nasty cold, one of those viruses that knocks you on your butt: you have no voice, your coughing endlessly, you can barely get your lungs to breathe. You want more than anything to be home, in your bed, with your mom serving you hot tea and hugs. BUT, you are at work, attempting to be productive (for whatever insane reason people go to work sick).  No matter what anyone says to you, it is really all about your flu. Sickness trumps everything and whining about it, receiving sympathy, helps you cope. Even if you manage to be productive, that bug is king until you are breathing easier.

It is the same for me, except it never freaking ends. So accept it and move on, right? Seven stages of grief and all, right? I have circled the wheel of grief so many times I should have a free ride punch card. This is the chronic illness bitch-slap: as soon as you accept it for what it is in your life, find a way to continue to be happy and productive, the disease changes the game. You get sicker, your meds quit working, your pain finds a way to invade yet another hour of the day. Pack you bags, you’ve been called up for another tour.

This is all to say that I am trying. I know that I am an obsessed, distracted and annoying friend. For my birthday last week, a soul sister posted pictures of the two of us in college. A time when we not only loved Clueless, we  were Cher’s alter ego, short skirts, doe eyes and all.  I feel like this illness has taken my Cher to the liquor store parking lot and kicked her ass. I look desperately forward to the day she gets back-up on her patent leather heels and walks, smiling, into the sunset…or the mall.

Happy Trails

My almost-one-year-old daughter is on a mission to wrap everyone around her little finger. We are twelve hours into a fourteen hour travel day and we are boarding our last flight. I know my fellow passengers are not thrilled to see a baby lining up for their evening trip. Stroller stowed, I’m lugging my daughter down the tight aisle, waiting impatiently for the crowd in front of us to shove their carry-ons overhead, bouncing to keep her content. As I grimly swap her from hip to hip, she catches the eye of a woman across the way, her eyes go wide, she holds up her little fingers and says “H-i!” as if she is greeting her best friend after a long, heartbreaking absence. The stranger melts right there in front of us. My little diplomat then repeats this greeting to everyone she can beguile. By the time we get to our seat, every passenger on the plane is our friend, fawning over her for the rest of the flight.

My online signature quotes “be kind, for everyone you meet is fighting a great battle.” And most days I succeed at remembering to treat people as such. I know that chronic pain has given me a unique perspective on personal battles, one I should use in all of my daily interactions. However, had anyone given me a reason to, I would have turned bitchy fast on that last flight of a very long day. It was amazing to see how quickly road-tired people warmed to the genuine greeting of a baby, inspiring even. To be seen by anyone, really seen, can make every difference in the world.

In honor of my miracle girl’s first birthday this month, take a minute or two to see and sincerely greet each other. Forget your pain, recognize the struggle and strength of the people around you. I promise, it will make your trip all the sweeter.

The Littlest Rabbit

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