Health and Things

One of the kid’s past teachers isn’t well. She’s going to be well but she had a little event and she’s busy mending. I was talking about her this morning to one of the male teachers and he thought she was looking teriffic and I had to explain to her that women will always look better to men than to other women. We see each other differently. I recognize small bags under my friends’ eyes, not because I’m looking for flaws but because I’m looking to help when help is needed. My husband, and most of the men I know, don’t see these things. It’s not an insensitivity, it’s just a different way of seeing the world.

My Dad always asks how I’m feeling. He’s probably the only person who does. Not because he’s the only person who cares but because the rest of the world knows how tired I am of RA and all that comes with it but talking to my Dad doesn’t seem like it makes things worse.

I’m still weighing too much and I’m still eating like I’m a runner. I haven’t been a runner for a number of years now. I’m exercising when I don’t have a cold but colds just linger with me. I’ve had one for ten days now and it doesn’t seem to be going away. I haven’t been to the gym in a week and even my hikes are slow. I just can’t breathe.

I’ve bought myself a blinged out pill case because Auti showed me hers at lunch and talked about how she was going to make her life fabulous. I’m moving forward in my own slow way and wondering how other folks deal with a chronic illness without letting it define you.

 

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  1. One of my goals as a father is to have the kind of relationship with my children where they know that when I ask how they are doing it is because I care and want the best for them.

    Ideally they won’t ever feel like I am insensitive, pushy or a pain-in-the-ass about it. 

    I know a couple of people who have chronic illnesses, including RA and they just keep doing what they do. If some days require slowing down than that is what they do but otherwise they live their lives.

    My perception is that they are managing their illness and not the other way around.

  2. It does get old, doesn’t it? I know exactly how you’re feeling. It took me quite a while to find my place with my RA/AS, and how I deal with it privately and publicly. Having those AI diseases are part of who I am, but there is so much more to me than that. So, I don’t let it define me. I absolutely refuse to let these diseases “win.” 

    Jessica, there is so much more to you than your RA. Having RA is just a blip on the screen of life…your life. In my eyes, we share the same illness, but I have never seen you as a RA sufferer by itself. I see you as a vibrant woman who does amazing things. You just “happen” to have RA, like I do.

    Those of us with chronic illness just deal with it, I guess (I’m being very general here and don’t speak for anyone but myself). It gets easier over time to put it on the back burner and go on with life. It’s always there and there’s nothing you can do about that. What you can do is shift your perspective, accept that some things are out of your control, and just live your life. That’s what I’ve done, and it seems to have worked. 

    I’m always just a phone call away if you need to vent. I totally understand where you are, right this minute.

  3. How to live with a chronic illness and not let it define you? I’ve never actually answered this question, but it’s a good one and maybe it’s time to try. I have HIV, but having HIV is not who I am and does not define me. I do spend more time raising money and donating money to causes specific to this condition. I’m also more likely to socialize with people who have HIV, not because of the disease, but because of the community that I associate and identify with. Like you, some days are harder than others. I too weigh more than I should and eat more than I should, but have recently gotten myself back to the gym. I had a scare back in 2005, pnuemonia that put me in the hospital for 11 days and out of work for a month. But thanks to Tony, I pulled through and am much more diligent about seeing my doctor regularly and reporting various changes to him. It is, of course, my intention to live a long life – that fortunately runs in my family. I don’t kid myself, my organs are aging much faster than a healthy person because of the disease and the medication. I also know that it’s not far from Tony’s mind. I’m a dozen years older and have had HIV for 17 years – two years longer than we’ve known each other. We are defined as a magnetic couple, I’m positive, he’s negative. Like I said, I plan to live a long life because Tony and I have a lot of things planned (and not planned) that we want to do, and I’ll be damned if HIV is going to prevent me from doing those things with the man I love.

  4. Well, it defined me and didn’t define me when I had UC. It defined me in the sense that it did limit what I could do, and I did miss a semester in HS and it did mess me up in some other ways.

    It didn’t define me in the sense that I’m still me, I didn’t let it ruin my life, but still had a pretty good outlook on things. 

  5. I don’t know. I imagine though you have to decide what you want to define you. What can you do despite illness to achieve the definitions you want. Let that be who you are, not anything else. 

  6. I was diagnosed with interstitial cystitis when I was 22 and had my first real flare up a week after I was diagnosed. I was bed ridden for two weeks and my stepdad had to carry me to the bathroom when I needed to go. Now my husband has that job if my flare ups get really bad. I refuse to let this define me. I push through it and it makes me feel a bit tougher.

    I tell everyone up front what I have (one of my college professors even announced it to the class because he had a ‘no potty break’ policy and I was his exception) and I’m not ashamed of it. I can’t breastfeed my son because my medication gets in the way and makes it toxic but the upside is my boobs won’t be down to the floor when I’m 70. 

    Having IC is a part of who I am but it’s not entirely my identity. Moving forward slowly is the best way to not let any illness define you. You learn how to work with it instead of against it. :-)

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