After the nightmare that was my Gyn visit recently, I went to my GP to ask about the new drugs.
Surprisingly (ha!) with a close family history of blood clots, I shouldn’t be taking anything to make my blood clot, except under direct medical supervision, which we assume means only if I’m in hospital being monitored. I’m incredibly annoyed that they were prescribed without pertinent questions being asked first.
I had a good whinge about the medical system and got myself referred to a different Gyn, in a private practice. So dammit, I’m going to be listened to, even if I’ve got to pay for the privilege outright.
With the EDS, a family history of blood clots (from the other side of the family) Gyn issues and everything else stacking up, my GP quipped that our family had all these issues, so that the rest of humanity didn’t have to.
Which sort of hit home.
I try really hard not to count the labels were dealing with, but we’ve got a whole host of things going wrong medically.
A veritable melting pot of fuckedupedness.
I mean, sure I can laugh about it, but what a nightmare.
And once, just once, I’d like to be not saving the rest of humanity from disease. You know? It just feels like a little much for one person to deal with.
They’re definitely not wrong when they tell you that one broken gene leads to a host of issues.
I feel you on this so very much. My husband has ankylosing spondylitis, asthma, GI issues, the whole host. I’ve got psoriatic arthritis, migraines, hypermobility, etc etc etc. Our lives are doctors, doctors, doctors. If we’re keep someone else from being sick, maybe it’s worth it… but until someone can prove that to me, well, this is just too much for one family. 🙁
I agree. Once you start dealing with more than 1 thing, it’s too much. Hard.
This will always come out wrong, but in some ways the gene pool is getting weaker when it comes to these crappy things. Because we’re (overall) doing such a good job at keeping people alive and able to have kids.
Yes, I’m sure you’ll read that in the you shouldn’t be breeding way, but I just wanted to put it out there that keeping inherited things going is the price we have to pay at this stage for keeping people alive.
One day, we’ll crack the codes and be ale to have more of an impact beyonf that. We’ll know the genes, we’ll be able to fiddle with them in such a way that only impacts on the specific target, and not the rest of the person. It will be great.
Or we’ll become robots. I think that might happen first.
One day. We’ll keep holding onto the hope that they can work out how to manipulate broken genes soon.
And I get what you’re saying. Hard as it is to know.
Hugs
And
Hearing you. xx
xx
Seems the wrong way to be saving anything, doesn’t it, by depleting yourselves? xx
Yes. I’d like definitive evidence to say that we are saving someone else from something. Please.
Hubby’s family have the Factor V Leiden that causes clots, Klinefelter’s Syndrome, autism, ADHD, dyslexia, genetic cancer trait and a shedload of other stuffs still coming to light. My side have a plethora, too.
The evolutionary melting pot might get it right!
Maybe it’s the Internet that attracts brokeness and that’s why we’re all collecting over here.
Yep, this sparing the world from sundry ailments ain’t all it’s cracked up to be!
Out of 16 girls in my generation of female cousins, 5 of us have now been diagnosed with breast cancer (and I have had it twice just to spare someone else no doubt) with 2 of us not going on to become survivors. Sadly the latest cousin to be diagnosed is not doing well either. Not good odds for the next generation.
And I think there is more than a grain of truth in what Fiona says, unpleasant though that thought may be.
Wow. Cancer runs in our family too and it’s not high on my list of ‘wants’. Heh.
Yes, unpleasant as it is, Fiona has it right.
I was good naturedly (ahem) having a go at my mom last night for giving me the most ridiculously effed up set of genes ever. She wasn’t quite as apologetic as I feel I’m going to have to be when Beast grows up.
So far just that we KNOW of there’s: alcoholism (both sides), mental health (both sides: depression, eating disorders, suicide, possible bi-polar, addiction to gambling and tobacco), high cholesterol, hypermobility, hypothyroidism (both sides) [the HI! genes, as I call them. Geddit? Hi-genes, like hijinks, except ironic, because they’re not even remotely funny? Fuck I’m hilarious sometimes. ESPECIALLY when I’m explaining how amazingly hilarious I am, obviously.], and of course we are cursed with unnatural amounts of beauty, charm, and intelligence. It’s a burden, har har har.
On Mr A’s side we have anxiety, depression, heart disease, spitefulness and a chronic inability to admit wrongdoing or apologise. Which I’m pretty sure are genetic defects because he sure as hell inherited them.
We feel very sorry for Beast. We joke that instead of saving up for a car or for uni fee’s for her like other parents, we’ll be saving for a full genetic screening and psych eval. Except then we think about it and it’s too close to home and not funny anymore.
Sadly I think I’ll be apologising to mine for a long time to come too. Sigh.
Our GP actually said that they were ONLY to be taken under medical supervision. As in when a patient was in the freaking hospital. Oh and just because I can, you have a spelling mistake in there too. hehe
Spelling mistake where? I can’t see it.
Spelling mistake?
Scrolls back up….oh, there it is.
I’m really sorry to hear about this latest fiasco, I just wish that for once you could go to a doctor and have something come out right.
I also wish research into these things didn’t take so much time so that once they find out what “it” is and what causes it, they can get on with finding a cure.
You know, something that doesn’t involve letting the family line die out, because to me that’s not really an option.
All of you out there who have these problems also have such great minds! (plus you’re really funny writers who make me laugh.)
Heh, I found it eventually.
Me too! God, it would be nice to have some faith in the medical system restored.
Some people have perfect genes, but lack a brain.
Other’s have imperfect genes, but a beautiful mind.
I’ve found that people who aren’t perfect in every way are more ‘normal.’
Everyone is dealing with their own issues, some worse than others and I think that defines who were are, and who we’d like to be. (and how strong we are.)
Big hugs xxxx
I agree, I don’t think there is such a thing as ‘perfection’ and even if there was, should we be aspiring to that anyway?
I don’t think anyone has perfect genes…nor are we meant to. We’re born and we die, like everything else on the planet. Along the way some of us might have more issues to deal with than others but I’d hate to live in a world that’s genetically engineered itself to perfection. The best things in life are absolutely always that way because of the worst things that show us the difference.
Having said that…just a day without all the added crap would be nice occasionally 😉 Hope it goes ok at the private gyn, have you got an outcome you’re hoping for? BG Xx
Yes, although being able to genetically engineer myself towards less brokeness is tempting. But I agree with you.
Outcome: Less painful periods, whether that be by painkiller methods, or something else. No Mirena and maybe some testing done to see if we can find the ‘why’ of my reproductive system. I’m fine with an unexplainable reason, but I’d like them to at least CHECK for things.
I”m glad I went away and put the baby to bed before commenting because it was reassuring to come back to read other comments pointing out that respecting difference is important and there is very rarely such a thing as perfect health. The slight whiff of Nazi eugenics (maybe I’ve totally misinterpreted Fiona?) unnerved me greatly. Surely the human condition is frailty and it’s how we respond to life’s challenges that is most important. How you respond Veronica to the many challenges you and your family face is pretty darn amazing. I hope you receive professional and an excellent standard of care at your next appointment. I think the other doctor’s statement was most unhelpful and just plain stupid really.
I just don’t see why if we get the means to stop a person from suffering and they choose to change / not pass something along, then why shouldn’t they make that choice.
And we all have different ways we’d go along that continuum, or what we’d use it for.
But the technology will be there soon and we’ll see how we can and will use it.
I think some of the others get the intent behind my comment, and mostly I’m glad Veronica ‘got’ what I was getting at. I don’t mean to offend anyone, but I wouldn’t personally choose to have many things if there was a way to change it.
I always find different views interesting. Personally, while I’d never aspire to be perfect genetically, I’d love a few less issues please.
I find it amazing that everyone thinks I’m amazing. Really, every day is a series of moments that we do our damned best to get through because I don’t have any other choice. I think my choice adds up to whether I get angry, or whether I laugh about it. Or whether I do both (usually).
He’s been my doctor since I was a baby, so I think I can forgive him for making a flippant comment. How I took it (and thought about it) probably wasn’t how he meant it. But yes, unhelpful entirely.
Absolutely disgraceful that the Obygyn didn’t LISTEN to you… it’s just as well you knew what you were talking about, otherwise her inadequacy would have possibly caused… well, lets not think of what can happen with clots.
*hugs* (big ones, but gentle ones) xx
It really is – drives me mad when they don’t just LISTEN to what I’m saying. And I know, blood clots are scary. That’s why I went to the GP to discuss the meds. Ugh.
Now you have a visible follower! You now come up in my feedller app on iPad. Hope I am not all alone there for long!
Yaaaaay!! Hehe. It’s scary adding something new for the first time because the numbers look terrible! Hello and thankyou 🙂
Sometimes, doctors … lots of medical and paramedical professionals … lose their subtlety filter and spurt out insensitive comments like that one. Especially when we’re baffled, chasing our tails at work of just struggling with personal issues ourselves. Usually, we realise too late that what we’ve said is hurtful, but it’s too late.
The concepts and reasons underpinning genetic research and modification are laudable, but I doubt the honest intent of every corporation, intent researcher and mad scientist. I like the idea of ending pain, suffering and disease, but I fear the potential of a “GATTACA” type world, especially when the genetic codes for breast cancer can be patented and therefore only tested for by one laboratory!
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