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Friday, August 24, 2012

Unsettling Update

I don't know if anyone out there has noticed, but I have been very unsettled lately and I am not sure why. Well, I do know a little by why I am unsettled, but Im not sure what I am going to do about things just yet. And here is why:

I had posted to ya'll before that I was sick, I just didn't mention how sick until I knew for sure. I didn't want to worry anyone about what was going on, and I still don't fully *understand* what is going on, but I do know what is wrong with me.. Here is a bit of a rewind in case you have missed it..

As some of you know, on July 23rd I had a Lumbar Fusion on my back scheduled. Well with surgery comes lots of blood work, doctor visits and pre-op appointments. Up until this point, my biggest fear was not ever being able to walk again. But then my blood work came back. My blood work came back, and I my red blood cell count was low (which indicates anemia for those that may not know) and my white blood cell count was high (which indicates some sort of infection, if you may not know) so they wanted to run more tests. But they had ran every test in the "book" on me and couldn't come up with anything. They did an STD screeen, they checked EVERY part of my body and they just couldn't figure it out. At the least, I was very anemic, which I had figured because I have stuggled with anemia since I had my last daughter (2010) and that just wasn't surprising. But after running test after test they just couldnt' find any sort of infection going on in my body. So my primary doctor shipped me to a Hematologist. The hope was that they would figure out what was going on. When I got to the hematologists office, they did yet again more blood work. Only to tell me two days later that I might have Leukemia, and they wanted to run yet again more tests. At this point my nerves were shot. I was soo frustrated with seeing doctor after doctor and having soo much blood taken that they were considering a transfusion, and yet no one could give me a definite answer as to what was going on with my body.

I was frustrated and irritated and just felt like giving up. I had seen 5 doctor's already and I had just reached the point of believing that they will just give ANYONE these days a PHD ( thats a different blog..) But I had all about given up, at least until last week.

I went from my primary doctor, to a hematologist, to an oncologist, to a hematology/oncologist specialist to finally an OB/GYN. Still not sure WHY they sent me to an OB/GYN but they did. And after countless amounts of blood work and pap smears and every other not-so-fun things that come along with a vagina doctor I FINALLY got an answer of what was wrong with my body.

I have a genetic blood disorder called "Atransferrinemia" .. If you would like to read about that, you can go here: http://www.webmd.com/a-to-z-guides/atransferrinemia But basically, its like my body is overloading on  iron but it isn't going through my blood stream. Which is causing the low red blood cell count and the high white count.

So now, I have reached this point that I am on about every medication you can think of from A-Z (and I HATE it!) and I just feel helpless. This thing I have, is definitely manageable, but it is still a pain to live with. But I still felt relieved at the same time. After going through all the BS I was going through day after day and all these problems I was having, I finally know what is wrong, and how to live with it.

It is VERY hard these days for me. I am not working, I have an eviction notice, shut off notices and everything is soo hard right now, my head is spinning. I am soo unsettled and unsure of what is going to happen next that I'm not eating right or sleeping right. I also have 3 children that I am raising on my own, plus all of these medical issues. And don't get me wrong, I do have family that is helping when I ask for it. But I am also very STUBBORN. I strongly believe that *I* brought these children into the world, it is my job and my job alone to raise them. I won't let anyone "help" me with them. Maybe that's the wrong choice, but taht's just how I roll I guess.

But I am unsettled in my home as well as everywhere else apparently. I rearranged my entire house today, and it about killed me Lol My body can't take moving furniture and bending etc.. like that! But apparently I am unsettled on facebook and even here on blogger. I have changed my background about 3 times the last 2 days alone.

So I do know why I am unsettled, Im just not sure what to do about it. I dont know how to *fix* things or even what I am going to do next. I am just taking things one HOUR at a time right now, because emotionally and physically and finanacially that is all that I can do right now.

Im sorry for all the typo's, I am sleep deprived Lol But I just needed to vent!

...Until next time my friends <3

7 comments:

  1. Wow, lots of scary stuff going on at the moment. Take a deep breath. Keep your chin up. I hope this all works out for you.

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    1. Yes, lots! I am just taking things one day at a time right now! I am hoping things work out too! Thank you

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  2. Good luck Miss. My heart is with you.

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  3. Such scary news! You have every right to be unsettled! My prayers are with you as you deal with this. At least now you know what you are dealing with and can take each day at a time to treat it.

    Kathy
    http://gigglingtruckerswife.blogspot.com

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    1. Yeah it took long enough for them to figure it out. I am glad they did figure it out though. Now I can start moving forward!

      :)

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  4. I actually read this blog this morning, but got off on a tangent as I googled and became familiar with your diagnosis. I am hopeful for a managed recovery. I believe your chances are better than what they originally thought was your condition. I wish you well. I will certainly pray for better health for you.

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