early alert

I am trying to see the bright side in all this medical malarkey that’s going on.  I started thinking of it with the gastroparesis and now I’m thinking of it in terms of the Reglan side effects.  I’m trying to see these things as more than just troubling symptoms and helpful signals from my body that things are not ok.

I have a habit of ignoring my body.  I’m actually a bit abusive to it.  This isn’t to say I haven’t taken care of it for vanity’s sake.  Like all well (or at least thoroughly) socialized women, I grew up caring about my appearance.  So I would go to the gym, not to be healthy but to feel better about how I looked.  I take care of my hair and skin, or at least try to.  I wear makeup.  I try to dress nicely, as much as the various symptoms will allow (i.e. no more heels for me due to the pains they elicit, long skirts help me keep cool in warm offices, etc.)  So add comfort to the list.  Comfort and vanity have been the two driving forces in what I will attend to in term of my body.  But just good health, caring for it like the precious thing that it is, not so much of a motivator for me in most of my life, now that I stop to think about it.

When I first get a new symptom, my reaction is to be very, very angry at my body.  I call it a bastard, a devil, a cruel and lazy partner I am saddled with.  I push it through even moments of obvious distress, if I think I can get away with it without sacrificing other things that are important to me.  My body is a means to an end.  It has never been a goal in and of itself.  What a change of perspective to consider it as something I need to and should take care of just for the sake of taking care of it.

This is contrary to messages we get socially.  “No pain, no gain”.  I grew up in the 70s and 80s.  The advent of fashionable “fitness” coincided with my adolescence.  What a model – the body is something to be mistrusted and abused in the name of pretty.  To quote a popular song from the period, “It’s better to look good than to feel good.”  And indeed, I look ok.  When I gained a bunch of weight on the progesterone therapy for my endometriosis back in 2003, people stopped me in the hallways to tell me how good I looked.  Must’ve been the flush in my cheeks from the chronic pulmonary problems the progesterone was giving me….never mind the hemorrhaging I had with my periods for those months that I was on that evil substance.  I looked good, I must’ve been doing something right!

When I subsequently lost all of that weight and then some after the GI problems started rearing up in 2004/2005, my dissertation advisor said “I wish I had what you have!” in reference to her own weight.  This from a woman who dressed like she shopped at the irregulars bin from the LL Bean cast offs store.  Never mind that I was slowly losing energy, becoming more susceptible to diseases, failing to make the grade in the PhD program because of countless delays that my poor health was wracking up.  I lost weight.  So culturally important.  I was not impressed with this comment at the time, but that reaction was just to share some of the fury I felt towards my unreliable body with my advisor for being an idiot and discounting how this limited me and pushed my goals increasingly out of reach.

Thinking of taking care of my body is not easy.  Today, I’m trying to see the boob reaction to my gastroparesis med as a gift.  As an early alert sign from my body that “hey, this isn’t ok.  This drug that only kind of works?  Yeah, it’s screwing things up royally in here.  You’re taking it so you don’t have heartburn and so you have less nausea so what?  So you can work?  Well in the meantime, you’re fucking us both up.  I’m hurting, please stop.”  The same goes for the GP.  I ignored, largely, the ramifications of my other autonomic symptoms.  It helped that there are any number of doctors out there who will not only neglect the import of these symptoms but actively encourage me to neglect it too.  But the GP is a lot less ignorable, discountable.  It is partly because it’s so new, I have lived with the really short syncope fuse for so long, I’ve adapted.  Not entirely, and it is progressing and I mourn that, but it just means doing MORE of what I have done in the past to accommodate.  With the GP, it’s a whole new ballgame.  New rules, new penalties for failure to play by them.  New constraints to explore and learn.  And all of it has been something I cursed my body for, every time I’ve had to say no to a snack or an outing.  Now, I’m trying to look at it – at least some of the time – as an important sign that I have to pay attention to.  It may never go away, and that thought does haunt me, but it’s having come on the scene means I now just HAVE to pay attention to my body’s messages.  I have to make sure I don’t have cancer, and I have to try to find and treat what’s causing it, even if that means eventually giving up a full time office job temporarily or permanently.

I can’t quite say thank you yet to my body.  But I can take on the responsibility for having neglected it for so long and I can try to start mending my ways.  I can try to start treating it like its something other than a plague, some whiny and spoiled child which fusses over nothing.  This is not nothing.

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  1. Medical malarkey…..sorry, but that gave me a chuckle. You sound so frustrated. I feel bad for you.

    • Thanks Mo, you should laugh at Medical Malarkey. It should be a blog name. It’s from having grown up where I did. I just can’t help injecting dark humor where it may not be appropriate. but a chuckle really is ok.

      I am frustrated. But at the moment, I am also taken with this new way of looking at things. I just gave myself permission to lay down on the couch for no reason. No reason other than feeling bad. I usually try to plow through til I’m seeing stars and spots. Right now? No. My body says “I wanna lay down…” and so I’m going to. 🙂

  2. This is the best post of yours hands down. I think you even touched on my issues in my big apology comment! I love the malarkey phrase too–I’ve been using that word ever since I found out it was one of the most Googled words the night of the VP debates (how stupid is this country?).

    I should comment tomorrow, but I’ll be just as achy and tired. What I pulled from this (or how I mistreat my body) is in overdoing it constantly and then just dying. It’s my A-type personality and I have no idea how to stop, which is why it was a Dr. who told me that I wasn’t working anymore–and that was that. I would have worked myself into the loony bin. I think we are both digging our own graves here. Why do I have to have the room so clean, the inbox cleared out, etc., etc. I should go to bed so maybe I can get 6 hrs of sleep, but no.

    I also am one who does my best to dress nicely (yes, most of my clothes are old or are from a thrift store, but I’m good with that stuff and no one is the wiser). I have to do my damn makeup and my impossible hair (or some part of all that even if I’m not leaving). Why? People wear PJs and slippers to Wal-Mart in this hell hole. I feel like just getting ready uses up all my spoons if we use that theory. That all came from my father and I see no way around it as I feel worse if I don’t look good, not that anyone pays any attention to me nowadays, so I’m using that term loosely, but that’s a loss too.

    Then we have the weight. I never had an issue with my muscular/curvy size 6 body– always 127 and never budged. I love the gym, but it was part endorphin release and part looking good. I got ya! Then the EDS came and I shrunk to a 0 in a few months. I accused the Gap of vanity sizing as I knew I was thinner, but had no scale and just a medicine cabinet for a mirror then. I’m not much bigger now and women (never men) always complement me, which makes me sick as I LOOK sick. This is NOT me and I know for a fact it’s a turn-off to the men who used to find me attractive. I look like a bag of bones and it’s just nasty. I think we live in such a demented society and I’m glad you brought that up. I also had a weird weight gain yrs ago from too much doxepin and my cholesterol was a mess and I didn’t look good that way either (and my doc was on my ass and I insisted I was eating healthy and walking daily). I was off the charts for my height, so I went from the 0 to an 8–tight 8. That was fun. I still have jeans in every size in storage just in case. I didn’t get any compliments then (really don’t carry extra weight well with the ghetto booty!), but I was miserable and now I can’t find a happy medium.

    Well, long story short (reverse that), I think you have so many valid points in this post and it reassures me that being utterly depressed about how I look and my freaky eyes is probably normal in our society, and my eyes were always my best feature and are now a diseased mess. I was embarrassed at PT today (as usual) b/c it’s so hot and I wear a sleeveless workout top and all I could see were the bulging, blue veins and then the 10 new bruises and veins below my yoga capris on my legs, which my gym guy there noticed on one machine, but he’s super nice (made a joke, of course). I try so hard, but I can’t do a thing about it. I left and kept my sunglasses on all day to hide my eyes! I really need to tackle this, too. I don’t know what the hell is benign and what isn’t and no one knows about EDS here aside from my eye doc. I have to learn how to not do everything, but with virtually no help, it’s impossible.

    Well, that was all about me, but I wanted to share what your brutal honesty meant to me and it helps to hear it from someone else (and yeah, I graduated in ’92, but ’70s and ’80s all the way). My former BFFs’ mom owned an aerobics studio (ha!) that was so popular and we hung out there all the time with the ladies in their leotards and leg warmers and guys (like my dad–what a yutz) in their teeny jogging shorts in the early ’80s. Ha! I was so thin as a kid I never noticed and I was the one in middle school trying to gain weight, but I looked normal by high school (and then getting on doxepin added more weight) and they used to call me skinny-thick if familiar with ghetto-speak. I think if it weren’t for the brothas I dated, I’d probably think I look smashing at 100 lbs and dropping right now. Hate it!!! I’ll keep thinking about what your wrote b/c I know your POINT is to pay attention to your insides more, but when no one really knows which of my issues are a concern, it’s even harder, and EDS has changed my outside so much. Sigh,
    A (sorry for any typos in my long novel here–my eyes are a swollen mess!)

    • Oh the every sized jeans in storage. Yes, I have such storage boxes. I stupidly gave away my very tiny ones since I thought I had a handle on the less than 120 lbs drops after 2007. D’oh. Not so much. Just picked up some loose size 6 from the tailor. I want to tell my boss how much this is costing me, like real financial cost! But I know it would be useless so I keep that tidbit to myself.

      So much of what you said is spot on for me. We really are not taught to care for ourselves, not in a health-related way. We certainly get blamed for “letting ourselves go”. There are even people out there whose first reaction, when they hear someone is seriously ill, is to find a reason why they did it to themselves. Not my favorite people, but then I do the same thing to myself. There has to be a middle ground of caring custodian between martyr/health freak, and life destroying rock star.

      • Well said. Per the clothes, if I had to work still, I don’t know what I’d do to keep my jeans up! I swear I hike them up every 3 mins., but they don’t make jeans for my body-type, no matter what my size. I had these skinny jeans in here from 4 yrs ago that I barely wore as I lost weight, but could wear them last year as I had the Hercules PT guy who bulked me up (loved it) and I gained 10 lbs + of muscles and they were almost tight. I felt so good to have all that muscle, but no EDS Dx and that’s how I got the tendinosis in my rotator cuff. Anyway, I forgot they were in a drawer and put them on last week and they just started to slide down. Boooo! In the donation bag now.

        Oh, I only wear flats, too! Heels always hurt me, but I used to have some kitten heels in the pointy shoe days and that would never work now. I just do boots in the winter (great for walking–feel like a Nazi) and my zip-up sandals in the summer. I have to wear comfy stuff, as well. I hate clothes now, so I come back and put on my lounge wear. It hurts! If I had the funds, I’d ship you what I have left in here and just pick and choose–I’m like a colorful Gap girl, not that I’ve been to the Gap in yrs. Probably not Gap Girl now since that’s so Seattle, but I get good BR tops at the thrift store–so lovely and well-made and no clue who here shops there, but they’re teeny tops each time so I suspect it’s the same woman. Need to find her and offer to drop her clothes off and just take them! Lol! I don’t see you in brights–something is telling me this, but I look like skim milk if not!

        On to more serious matters, when I had the fibro Dx, I totally blamed myself, or actually the sick bldg. I worked in, but I chose a higher paying job so it was my fault. I got sick within a week of working there. Maybe the mold, meth head/hoarder next door (converted apt. in projects) triggered something and it turned the EDS switch on–would love to know if more people are like that, but I seriously would replay this in my head everyday: if I hadn’t have taken that job, I wouldn’t have gotten sick. If 9/11 didn’t happen, I could have gotten out faster, but all the fed. grants dried up due to the war and no non-profit jobs in sight. If I never came back from Mexico the last time… I think I eluded to all that in my Swap Meet post.

        I did get comments about being a workaholic and that causing it, but the job was never stressful, it was the idiots I worked for, even though I was almost always off-site. I think you’re probably the same. Then, I had a seasonal business in the summer on the weekends, so I’d pull 80+ hr weeks for months, but I loved it, even if it was really physical. I don’t know. I let myself off the hook when I got the EDS Dx, but why am I so much worse than my mother or even my late grandfather. You’re so right about the middle ground–let me know when you figure it out! I just think if I had your husband (well, his clone), I’d be so much better. If you even knew how much I did in the past 2 days (in this heat and with no sleep)–I swear. I just need help every day and who to ask and then how to ask? I’m just in overdrive and then stall out. Ugh. I don’t even know how I’m awake. Oh, well I decided to drink lots of tea so I could clean out my inbox (why?), but 2 hrs ago my eye was like Biggie Smalls’ and I couldn’t see at all–the floater from fatigue. So, I squinted and read with 1 eye! Ugh. I wish there were good docs here and I didn’t get so sick from surgery. I’d just get this fixed and pray I don’t scar and my eyeballs don’t pop out from it!

      • Cake song springs to mind with regards to your overstressed workplace and coworkers. “Tougher than it is”. http://www.youtube.com/watch?v=OjL07JQ5cLo I know I am unbelievably lucky to have Mr. Patient. Especially without a good support network, which I really wish I had. Whose blog was it that I was reading that said that she didn’t have a casserole disease? Was that you? It was a great line.

  3. Funny song… oh, that sounds like a few people I know (hope not me!).
    Comment wasn’t from me, but good one! 🙂


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