Tuesday, March 22, 2011

Well.....

We'll start with the good, because that's always a great place to start.

I had my phone interview yesterday. And it went really well. While I still don't know whether or not my lack of previous phlebotomy experience or phlebotomy certificate will hold me back, I do know that I felt very confident in the interview and I have high hopes for a sit-down interview with the team leader of the lab. I'm still hoping that they will train me on the job. Really really hoping and praying. I would love to land this job.

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And for the not so good.

My doctor's appointment did not go well. Or at least, no how I had hoped. My neurologist doesn't think there's any need for me to have a feeding tube (specifically J-tube) put in either. We talked for a long time and looked over many past tests and my medical records and things. And while there are definitely things physically and physiologically wrong with my GI tract, there is nothing that should be stopping me from getting adequate nutrition. My problem is a "sensation" problem. Something in my body is telling me I'm full too soon or that I'm in pain when I eat or that I'm nauseated with little to no stimulus or etc. And while this would be a reasonable diagnosis/cause, it doesn't actually help me. Even if my sensation problem should not be stopping me from getting food and fluids, it is. And it's wearing me out. I'm not healthy and I can't pull myself out of the unhealthy hole that I'm in because the body needs food and water to heal. Without that, I'm just getting sicker and sicker.
I know the risks of a feeding tube, I know what I would be up against, I wouldn't want it to be permanent but I would endure it as long as my body required. I know all of this. I've been caring for patients that require these for years. And I've researched even more in relation to my own conditions. I'm not going into this blindly.
All I want is for someone to see that I want to feel better. That I feel like my body is becoming my prison and holding me back more and more every day rather than being my vessel for exploring life and having fun and enjoying myself. Going through every day feeling like I'm starved, feeling weak, feeling like something could be better....it's just not fair. I used to be better. I know I can be better, that my body isn't supposed to be like this. I know that I'm sick and that my health will probably decline faster than my peers, but I don't expect for that to happen for decades. I'm still young and there's no reason that I can't live a healthier life. I just need for someone else to see that.

.....because I know that if any of these doctors were in my shoes, there would be no doubt in my mind they would be looking for any doctor to do this for them too.

If we do this now, it'll give me more energy to work longer, to care for myself better, and to help doctors properly define what is wrong and right with my body. Because for all I know, half of my illness could be caused by my lack of nutrition. This would help me until doctors could figure out what was going on. There's no reason for me to suffer in the meantime.

When my neurologist asked me yesterday if I was anorexic or depressed, I said no. And I'm not. But, feeling like this, it does get me down. Not like I want to hurt myself, not like I want to die. I don't feel depressed like I did in high school. I just don't feel like my life is what it should be. There's a big difference. My knee-jerk reaction to tell her I wasn't depressed was right, because really and honestly, I'm not depressed. And I think if I told her that I felt even a little down, there might not be a chance to explain that it came from this, not caused by this. And I guess my mind knew that too without me having to sort through it all.

I think I'm going to call my mom and have a long talk with her about all of this. Because she was a little hesitant about the feeding tube idea when I first mentioned it to her, but I need her to be understanding and on the same page as me. If she knows the facts and I can explain it clearly, I know she will feel as strongly about it as I do. She'll still feel upset about her baby being sick, about another surgery (no matter how minor), but I really do think she'll support me and want to do the same thing. Then I'm going to make an office appointment with my gastroenterologist and have my mom come with me, to help explain that I wasn't like this a couple years ago, that I had a GREAT relationship with food, loved it, cooked it, ate it, invented with it, I was never shy on calories (3000 calories a day on average before I started getting sick). I want someone to support me and help my doctors see that I'm not going in blindly and that I know what's best for my body, not just what they think is medically best for the average body.
Because I don't know how much longer my body can physically hold out like this.


Anywho.....there's that. It sucks, but I'm dealing. Like I always say, I have no choice. I won't take it lying down. But that doesn't mean I won't do everything possible to make my quality of life better.

2 comments:

  1. I'm sorry to hear that your doctors aren't listening to you. I'm not surprised, but I am sorry to hear about it. Taking your mom to the doctor with you might be the best idea I've heard for a while. If the doctor is smart enough to listen to a least one of you, something good may come out of it.

    As far as the depression goes, a great number of people with chronic illness are depressed. I'm going through it myself. It's a type of greif. Losing your health can be as devastating as losing a family member. It completely changes your life.

    Hope you can get through to your doctors.

    Hugs!
    BubbleGirl

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  2. I talked to my mom and she thought it would be good for me to gather up all of my medical records and have them sent to my old family doc to look at. Even though he hasn't cared for me in years, he knew me growing up and how I used to be. He would know the difference and how drastic the change has been. Something I can't convince my new doctors of. To them, I don't look as sick as I'm describing, which makes it hard to believe I could be that sick. So even though it's going to take some time, I'm going to get those records to him. And I'm going to make a office visit appointment with my GI doc so that my mom can come with me and talk to him as well. To tell him that I'm not me anymore.

    Yeah, it is indeed grief. But admitting to having down days throws you into the ranks of a psych patient and everything else goes on the back burner while they try to figure out why you're loony toons. And I can't risk that. Because my problems aren't psychological, they're physical.
    I just want to figure it out and start feeling better again.

    ::hugs::
    Stac

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