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07/10/2010 10:49 AM

Am I the only one??

callieshea
 
Posts: 5
New Member

I have these days when I would do anything to just go check myself into the hospital for a transfusion. I no when I need it. Yet, Doctors seem to think I no nothing about it and pass it off like its nothing. I always get that ya well your anemic, Blah, Blah, No big deal same old story. Well to me the person who has to deal with it everyday, it is a big deal. Im weak and tired. I just want a normal day. I haven't been back to the Doctor since the first of January. I didn't have insurance until recently so I stopped going. The problem is my doctor wont see me, I owe all of them way to much money from an extended hospital stay in December. So once again I start the journey to find that one in a million Doctor who will listen to me. I don't want another wasted co pay for an Iron prescription that I wont even take. I just don't ever take it. I cant stand Iron. The jell caps aren't so bad but the others. Yuck!!! So I guess I have to options. Which one is easier????? Find a new Doctor and tell him all about it, or Find new Doctor tell him nothing and just give him all my symptoms and see what he comes us with???????? Either way it will more than likely end as so many do, I think they think were nuts. I mean I have a list of side effects a mile long. Guess im just curious in others opinion and that help me vent a wee bit. LOL.W00t

Post edited by: callieshea, at: 07/10/2010 10:51 AM

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07/10/2010 11:33 AM
TaraT
TaraT  
Posts: 4164
VIP Member

Please feel free to vent ANY time you feel the need. We've all been there I do believe.

I think when I really need a doc I look for a youngish woman in the medical field... Hopefully one that hasn't been in practive tooooo long but just got out of school..

I find that they are still fresh and very thorough. It's hard to find a good doc...WE ALL KNOW THAT...

For my blood problems I use a hematologist who gets the job done and surely saved my life but he's a specialist....He won't treat anything else..

Well you just fall apart when your blood isn't right. I do know that taking the iron (gel caps if you can't handle the others) with Orange juice or vit. C AND B12 will give you a little energy and it will help absorb the iron.

Drink lots of water to give your body what it needs to build the blood volume.

Have you been diagnosed with the CAUSE for your anemia yet?


07/10/2010 11:52 PM
callieshea
 
Posts: 5
New Member

Yes I have Been diagnosed. After 2 weeks and way to many test they finally came to the conclusion of Iron Deficiency. My hematologist is the one who diagnosed me. I went to his office he ran the test then looks at me tells me what it is and says "you aren't sick, don't come back". So he didn't really do me a whole lot of good. but he isn't just a hematologist. He works for the cancer center so for him I guess I don't seem very sick. All I drink is water but I haven't taken Iron in nearly 6 months. I'm out and haven't had time to go to he doctor not a real interest in going back. I no I need to but its just so annoying to hear a doctor try and tell you what's wrong with you when you have been going through it long enough to diagnose yourself, give me a prescription pad and the resources and I could handle it just fine. LOL. I've been anemic since I was 12 so I have pretty much heard it all from every doctor. Oh except one thing. Has anyone ever developed a Metalic taste in their mouth??? I eat Ice about 90% of the time but a few weeks ago I just couldnt get the metalic taste out of my mouth and Ice made it much worse for some reason. Know it just comes every once in a while. Just curious.

07/11/2010 10:30 AM
TaraT
TaraT  
Posts: 4164
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I actually have had this sensation before. Blood tastes like metal to me too...when i had something happen to cause blood in my mouth I always want to gag from the taste and smell.

07/12/2010 08:33 AM
Cbelle
Cbelle  
Posts: 467
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Callie, I'm so sorry this is all going on. It's so utterly frustrating, and we wind up spending what little energy we have on feeling upset and frustrated!

Definitely keep very hydrated - I found that I felt HUNGOVER when I was dehydrated - and imagine how much water your body needs to make a lot of blood cells!

Definitely OJ and iron are a good combo. I'm wondering how you taste them if you're just swallowing them?

My iron supplement of choice is Multigen - actually a multi-vitamin (for absorption) iron pill that chemo patients use. I wonder if you could ask about it.

There's a thread here about "days you feel like dying" - I hope you'll add your thoughts.

Cara


07/12/2010 10:47 PM
callieshea
 
Posts: 5
New Member

Well for me the metallic taste is much different than the crave for blood, which I also have. Not very often, but enough to remember the taste. As for the Iron pills is not so much the taste as the fact that I have really bad acid reflux and an ulcer. which can cause a lot of belching and vomiting, so when I take the iron pills everything for me starts to taste like that. Open a bottle of the Iron Sulfate and smell it. That is what I end up tasting all day long. Nothing really covers it, I thought milk would but it just makes it taste even worse. A lot of people have been telling me to ask about the B12 shot. I don't no a whole lot about it. It seems like I will more than likely end up getting Iron shots but everyone says they are very painful. I was going back to the Doctor today, but something came up. I have had a new symptom though. Not really new but increased. Instant Headaches. Some don't last long and some last all day. But they have been really intense lately.

Do people ever make you guys feel like hypochondriacs? I mean maybe its just me but I have so many symptoms and random things that come and go. Not only the anemia, when I last went to the hospital for the first time in years They kept finding all of these things wrong with me. Which made me realize im not crazy, but sometimes it just seems like people are, well, kind of like wanting me to get over it. But im always tired and in pain. I don't know, Maybe im just paranoid.


07/13/2010 08:57 AM
TaraT
TaraT  
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What all did they find wrong withyou? Do you know what is causing all of your pain?

07/14/2010 11:22 PM
callieshea
 
Posts: 5
New Member

Well when I went into the hospital in December the first thing was to start transfusions. Then to start searching for what may be causing it. They never found anything serious but when you have all these smaller things everything gets overwhelming and you can never tell what is what.

*****Stomach Ulcer no big deal just heartburn and some pain

*****Intestinal Polyps , they came up non cancerous after biopsy and don't really give me problems but they think they could be the cause of frequent hemorrhoids which I have learned to deal with pretty well.

*****Gall stones which landed me back in the hospital 2 weeks later to have my gall bladder removed. Know my stomach is achy and digestion isn't good. I can eat and 10 min later its straight to the bathroom which never makes things easy when you don't feel good already.

*****Ovarian Cyst which are my biggest problem. I have had them for years but there were 10 in December larger In size than normal. I have not had un ultrasound since, so I don't know how many have ruptured. I no there has been atleast1 large rupture. Other wise it just comes and goes some days are worse than others.

**** Iron deficiency Anemia Which is the obvious one

So all of these things just add up. In the past 3 or so months I have been having my periods every two or so weeks. I'm only twenty I just cant handle all of this. I can deal with the pain. But the lack of energy is killing me. I don't like being a zombie. And everything just comes on so easy and then goes away just as fast. Before they found the Iron deficiency they let us go 2 weeks thinking it was leukemia because it was the only thing left. No one new what was wrong but after 3 units of blood my Hemoglobin was still the same. After that I try really hard to stay strong because that was by far the hardest thing for me and my fiancé . I guess I just keep trying to tell myself that things can always get worse, but at the same time since I don't have a horrible disease people just don't recognize it as something being wrong. I guess what im trying to say is sometimes I just wish I had the love and support from my family know coping with the anemia as I did when They thought is was something really bad.

Well im just starting to ramble know so I guess I better just stop for know.

Thank you everyone for your support.


07/15/2010 10:44 AM
TaraT
TaraT  
Posts: 4164
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callieshea well you have our support. I know that's not like your physical family supporting you but you do have a place to go where people understand...

When anemia is chronic IN MY OPINION IT IS A DISEASE! People will respond to "blood disorder" which is what anemia is...Leave it at that...

Do you have any fibroids as well? I have had cysts etc..I have poly cystic ovarian disease (PCOS) It's actually a syndrome because it has a myriad of symptoms....

There are so many treatments though..For cysts if this is the cause of your heavy and frequent periods ie...your anemia...they normally start with hormonal supplementation to try and get you to stop bleeding...

Are you on the pill? Also, have they tested you for H-pylori? It is the cause of most peoples GERD and stomach ulcers...That can be treated as well....

Well there is HOPE....doing research ourselves is sometimes the best medicine...That way we know if they are not doing everything they can to help us.

Sometimes it's hard to get indignant when you have no energy...but we really do need to let these dr's know that this is NOT the way you want to live your life and IF THERE IS SOMETHING THAT CAN BE DONE TO CORRECT IT THEN LETS DO IT!

I hope you get some relief dear..We're here for you!

*HUGS*


07/17/2010 10:35 PM
callieshea
 
Posts: 5
New Member

We'll I went to the Doctor today. hemog. is 9.5 at the moments. They put me back on Iron and told me to go to my OBGYN and let him decide if I needed a transfusion yet.
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