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I seriously wish... *vent* (piog)

Posted by on Feb. 12, 2013 at 2:55 AM
  • 14 Replies
1 mom liked this
That people would stop telling me that my condition is the same as someone else's who has something completely different.



I have antiphospholipid syndrome. It's BASICALLY (but a lot more complicated) a blood clot disorder. People are CONSTANTLY trying to say "oh so-and-so has factor 5 liden. It's the same thing!" Ugh not really.



APS is an autoimmune disorder, and is generally attached to other autoimmune disorders such as MS or fibromyalgia or lupus.



F5L is an inherited blood condition that only effects the blood. Yes, the two conditions are treated the same in pregnancy with lovenox or heparin injections, but they are far from the same condition.



I had to argue with an OB nurse the other day who INSISTED that my diagnosis was factor 5, and when I said no, it's APS she tried to convince me it was the same. This is the one individual who should actually know better. It's really frustrating.



I have issues from it concerning more than just my blood. I also have many autoimmune symptoms/issues and am in the edge if being partially disabled because of it. (In the process of being diagnosed with ms, but it had to be postponed because of the pregnancy)



So yeah, the conditions are similar when it comes to pregnancy, but they are FAR from the same
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by on Feb. 12, 2013 at 2:55 AM
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Replies (1-10):
EmmaZate
by on Feb. 12, 2013 at 11:53 AM
Bump
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EmmaZate
by on Feb. 12, 2013 at 12:22 PM
Venting is no fun when no one responds!
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amanda81919
by on Feb. 12, 2013 at 1:12 PM
I'm sorry you have to deal with all that and then have to deal with idiots.
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Mommyof2114
by on Feb. 12, 2013 at 3:22 PM
I'm so sorry. I'm not familiar with this condition. Did you get your dd back??
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FoxTales
by on Feb. 12, 2013 at 3:45 PM
Well, I know this person and they have EXACTLY.... ;) believe it or not, I know what you mean. My brother has a very unique disability that has never been able to receive diagnosis. So here come the questions, at every doctor's appt, or mom's group, or whatever:

Is it cerebral palsy?
Is it muscular dystrophy? (yes, let's pick the 2 diagnoses everyone thinks of first and ask if the doctors tested him for it in the last 21 years...)

Has he had genetic mapping?
Has he seen a neurologist?

...


Well i know someone just like him! No you don't. He is a medical anomaly. They have never found anyone exactly like him. They likely never will, because it is just that something (or, to be exact, a lot of something's) went wrong and no one knows why.

Sorry to hear even your doctor wouldn't listen! How ridiculous... She should be the one to know better, but i do know that if medical health professionals think they know something, they will often push to say THEY are right even if you know better. I don't know why half of them seem to come with inflated egos :P
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OompaLover6969
by on Feb. 12, 2013 at 4:12 PM
(Big hugs!) <3
I know exactly what you mean! I have (essentially) an incurable chronic pain in my lower back. I TRY to tell DH how much pain I'm in on a daily basis & he always says "I know! I work all day. My body aches too.". Ummm... No! Not the same! I hurt BADLY. ALL THE TIME. Daily body aches from work aren't even CLOSE to the same damn thing. :/

Ugh! So frustrating! I would have googled that shit right in front of the nurse & made her feel stupid. LOL! :-P
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greengreengrass
by on Feb. 12, 2013 at 4:18 PM
My dh has chronic pain in his back that nobody can figure out why. Muscle relaxers and pain meds don't work. He's in debilitating pain every day, and sometimes I say things like your dh but then I always feel bad! I know (well not really) how much it hurts for him :/

Quoting OompaLover6969:

(Big hugs!) <3

I know exactly what you mean! I have (essentially) an incurable chronic pain in my lower back. I TRY to tell DH how much pain I'm in on a daily basis & he always says "I know! I work all day. My body aches too.". Ummm... No! Not the same! I hurt BADLY. ALL THE TIME. Daily body aches from work aren't even CLOSE to the same damn thing. :/



Ugh! So frustrating! I would have googled that shit right in front of the nurse & made her feel stupid. LOL! :-P
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EmmaZate
by on Feb. 12, 2013 at 4:59 PM
My husband says the same thing to me. I have symptoms of ms and it includes dibilitating pain... There are days that my skin burns and I cry when I merely rest my arm on my lap... He says sometimes that he hurts too and I should suck it up. I try... But sometimes you just can't! :-/

Quoting OompaLover6969:

(Big hugs!) <3

I know exactly what you mean! I have (essentially) an incurable chronic pain in my lower back. I TRY to tell DH how much pain I'm in on a daily basis & he always says "I know! I work all day. My body aches too.". Ummm... No! Not the same! I hurt BADLY. ALL THE TIME. Daily body aches from work aren't even CLOSE to the same damn thing. :/



Ugh! So frustrating! I would have googled that shit right in front of the nurse & made her feel stupid. LOL! :-P
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EmmaZate
by on Feb. 12, 2013 at 5:00 PM
Yeah I posted it yesterday! She's here and extremely happy! We're trying to get a routine going and it's difficult but its all good. :)

Quoting Mommyof2114:

I'm so sorry. I'm not familiar with this condition. Did you get your dd back??
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EmmaZate
by on Feb. 12, 2013 at 5:05 PM
Yeah it's frustrating. I'm sorry that your brother is going through that and y'all have to deal with the idiots telling you they know what's wrong.... :-/

The woman wanted to argue with me. I asked her if she even bothered to look in my chart. She said she looked at the paper maternity file, and I laughed and said you don't know a damn thing about my medical history if you don't get on the computer and take the time to review my chart. (Being in the military healthcare system everything gets logged on the computer so it can follow you from one post to the next.)

I told her until she actually read it she had no room to talk, and that she needed to hit the books again on etiquette and conditions, because she did it all wrong


Quoting FoxTales:

Well, I know this person and they have EXACTLY.... ;) believe it or not, I know what you mean. My brother has a very unique disability that has never been able to receive diagnosis. So here come the questions, at every doctor's appt, or mom's group, or whatever:

Is it cerebral palsy?
Is it muscular dystrophy? (yes, let's pick the 2 diagnoses everyone thinks of first and ask if the doctors tested him for it in the last 21 years...)

Has he had genetic mapping?
Has he seen a neurologist?

...


Well i know someone just like him! No you don't. He is a medical anomaly. They have never found anyone exactly like him. They likely never will, because it is just that something (or, to be exact, a lot of something's) went wrong and no one knows why.

Sorry to hear even your doctor wouldn't listen! How ridiculous... She should be the one to know better, but i do know that if medical health professionals think they know something, they will often push to say THEY are right even if you know better. I don't know why half of them seem to come with inflated egos :P
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