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Georgia
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30 Jul 2011, 11:46 pm

Don't know how else to describe it. Two months ago I was going to work, and doing what I needed to get done. Staying busy, etc. Then wham I go into the hospital. I think my body just couldn't keep up anymore.

I requested all of my medical records from about 10 years ago until now. Over 600 pages! That's crazy. I've been reading the doctors' notes and impressions of me; some have thought I was just whiney, others thought I was just overtired and needed to send my kids to school. Have a hamburger while I was at it because I was/have been so anemic.

Now I'm waiting to see yet another specialist out of state. In the meantime, I have been avoiding leaving the house. I have driven the car exactly once in two months. I'm considering getting a wheelchair so that I can get out without worrying about getting dizzy or tired.

Anyone else crashed and burned before? I know that it can't feel this crappy forever, but it'd be nice to have proof.

Thanks for reading...


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AardvarkGoodSwimmer
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31 Jul 2011, 1:23 am

I have not crashed physically before. Certainly, anemia or something else could explain tiredness and dizziness. Maybe this upcoming specialist will be a doctor who's an okay listener. And of late, I'm also kind of liking the idea of someone who's just a 'regular' doctor like an internist or family practicer who has some horse sense.

Now, as I understand with anemia, it's like the original Heinz 57. There is a range of possible causes. So, the doctor might try the most common cause, and if that treatment doesn't work, that in and of itself is diagnostic. Then based on that feedback and new information, try what is now the most likely. That might seem like sloppy medicine. But that ping ponging back and forth, as long as there's good communication, is actually good medicine (took me a long time to come round to this view). It might be worthwhile to try someone locally while you're waiting to see the specialist. One side-benefit is that you'll then have more information to bring the specialist.

Georgia wrote:
. . . I requested all of my medical records from about 10 years ago until now. Over 600 pages! That's crazy. I've been reading the doctors' notes and impressions of me; some have thought I was just whiney, others thought I was just overtired and needed to send my kids to school. Have a hamburger while I was at it because I was/have been so anemic. . .

That's a pounce. The doctor is seemingly nice to you face to face, then believes and writes negative stuff. This hurts me when it happens and also throws me for a loop. Most commonly for workplace situations, also this lousy psychologist I saw when I was a teenager.

Please note: I AM NOT A DOCTOR. I guess I'm kind of a medical buff and a pretty good guy :D I do think for ongoing tiredness and dizziness, you want someone who is a pretty alright listener.



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31 Jul 2011, 1:39 am

So this is the story all about how your life got flipped, turned upside down?



Georgia
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31 Jul 2011, 9:28 am

I appreciate your responses, thanks!

My anemia has turned out to be a rare genetic blood disorder. About 8 years ago, I started to get treatment for iron deficiency anemia, which is the most common type. I understand that they wouldn't automatically look for a rare cause first, but iron treatment is contraindicated/ could actually be harmful for this type of blood disorder.

Where I live, the hematologists don't have any experience with this disorder, so the doctor I'm seeing actually wrote most of the current literature on it. Her work is sited everywhere I've looked.

I think everything feels so heavy because I've had to go without knowing what was going on for 8 years now. Just imagine a doctor telling you that you should be feeling better than you do and they don't know what else to do for you. It's scary.

It's been hard to make plans for the future. I've had to leave my job, and I'm hoping that I'll still be able to go back to school. I was dancing in a troupe, and had to stop that too. I'm also worried about the longterm effects of getting the wrong treatment for so long; organ damage is possible. I'm usually a somewhat optimistic person when things get hard--and I've been through a lot--but I just can't muster it right now. So many unknowns.

Thanks again. Getting it all out is actually therapeutic, right? Has anyone had to go from being very active to nothing very suddenly? How do I work my way through this self-pity crap?


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AardvarkGoodSwimmer
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31 Jul 2011, 2:29 pm

In the 90s, I was the manager of small photocopy center at a university. I was on good terms with my one assistant (we hired temporary workers for rush periods the beginning of each semester), with university staff members, and with some professors. I felt generally appreciated even though I was different. I left after my boss let me down yet again (long story).

I felt, time-wise, that I went from running 100 miles per hour to 0. And socially it kind of snuck up on me. Even though it wasn't really prime social interaction, it was kind of enough to keep my juices going.

I can see how losing active involvement with your dance troupe could be a blow even if you stay friends with the members.

Maybe getting multiple positives going at the same time without being particularly picky about which positive? Even if it's only groups that meet once a month that don't really do that much (because the leaders don't have much time and don't want the complications of delegating, so be it). Three such groups a month kind of gives you the face time of seeing the same people on a regular basis . . .

which for me seems almost like a biological need, or deeply entrenched.

And wow, on your rare type of anemia. I'm not sure why doctors seem to get 'stuck' and not lightly back off when something is not working, but they do seem to. I'm glad you have found someone good who knows what she is doing. :D And hopefully, the right treatment will make a big, big difference.



Georgia
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01 Aug 2011, 1:21 pm

Thanks Aardvark, the story you relate is very helpful. :)

Even though I didn't particularly like socializing much at work, I miss having at least some interaction with people other than my family. The dance troupe could be draining also, but I was physically active doing something I enjoy.

Being seen by this new doctor will at least resolve some of my uncertainty about what will happen next. It's going to take me awhile to re-orient myself to this new reality, but maybe it will lead to something better.


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Georgia
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01 Aug 2011, 1:24 pm

Jory wrote:
So this is the story all about how your life got flipped, turned upside down?


Oh your avatar... (I think) I get it now :lol:


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Jory
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01 Aug 2011, 2:06 pm

Georgia wrote:
Jory wrote:
So this is the story all about how your life got flipped, turned upside down?


Oh your avatar... (I think) I get it now :lol:


No. The "Fresh Prince" theme song. I can't control my smart-assness sometimes.



AardvarkGoodSwimmer
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02 Aug 2011, 1:13 pm

You're very welcome. :)

And yes, I do sometimes find that even slight social interaction is something I vaguely look forward to, and more definitely something I miss when it's no longer there for some reason.