The End is Near... Maybe

  
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Spike

Don't Berate,- Educate!
 
 
Barked: Tue Jun 9, '09 5:13am PST 
A few months ago, I went to the Amen Clinic up in WA. I was extremely unimpressed with the doctor, especially after he put me on something he knew to make me sick. After having a long talk with the NP that had taken me off of the stuff that made me sick, I concluded that the doctor is an idiot (what a surprise) and that I would rather be treated by the NP. She really seems to have a grasp on reality and what needs to happen. She took me off everything the doctor had put me on and started me on something new. Of course, I had a bad reaction to it. This is on top of it rendering my bc completely ineffective... (I have really horrible periods and is the main reason I'm on bc.)

So this morning I called her and was preparing to be very upset with her for not telling me that this new medication would mess with my bc. When I told her this, however, she got very puzzled. It's NOT supposed to mess with bc. She wanted to know what else was going on. I mentioned stomach problems, among other things, and she asked for how long. After I told her my whole life, she became even more puzzled. Now, I've been keeping a running record of various symptoms that I've had throughout my life that all of my medical professionals I've seen have attributed to my psychiatric problems. Well, this NP doesn't think that's the case. She thinks it's that reverse rather. She is taking me seriously. I shouldn't be amazed at this -- doctors should always listen to their patients. But this is the first time in my lifetime I am being taken seriously about my myriad of problems. I sent her a very long list with my symptoms. I haven't heard back from her yet, but I expect that it might take a ittle time. She mentioned maybe just sending me to the local hospital for some tests is her theory is correct.

Now, she told me what her theory is but only after I told her something. I've been talking with Harley about her condition. It sounded so familiar, so I started researching it some. It turns out that this would explain everything, including my psychiatric problems (one of the readings that had symptoms lists said that these problems are cause but not psychiatric in nature; would my mother love that?) and things that I never really thought of as symptoms. This that are just quirks about me. Things that I have listed in rants from years ago as causing me problems and are big indicators for this. Anyways, I told her about Harley and what I had found out about this condition. She was quiet for about half a moment before she told me that it was the same thing she was thinking.

So... I'm stunned. Very happy, but stunned. The end of all of this is in sight... Maybe. I feel like I don't want to jinx it by saying that I feel for sure that this is what it is, but the truth is that I do. It just matches so completely. Of course, alternate side of that is that I feel like I'm being hypochondrical -- I know someone who has this so it must be what Ihave too. I'm excessively worried what pups here would say if I came out and said I have the same thing Harley does. I realize how stupid that is, but it's the truth. I guess I'm very anxious about this, about knowing, about being able to say for sure what my problem is, but also about what if it's not. What happens if this isn't the answer, that I'll have to start looking again, that I'll never find an answer. I'm also anxious about the condition itself, the progression of it. Harley has symcope; I don't. Many times I feel like I'm about to faint or just fall over, but I haven't yet. I know not everyone with this condition has syncope, but I also know that it can progress to it and that usually starts at the age or a little older than I am. At the same time, I almost wish it would. I know how rediculous that is, but it's like then "they" would see the effect of what I have.

Anyways, I needed to tell someone, to share my happiness and anxiety with someone who might understand...
Harley, SD,- CGC, TDI

Super Service- Boy!
 
 
Barked: Tue Jun 9, '09 9:21am PST 
Oh boy Spike....

The journey begins. I'd say "welcome" but this isn't a "club" that people seek to join.

First...join the yahoo group...NCS_Fainting. This group is a wonderful and supporting group of people with (or thinking they may have) a dysautonomia. They will ask you to fill out a questionaire but it is to keep out trolls and protect the people in the group.

If this is it, and it sounds like it likely is, you will go through the 7 stages of grief with it. At first, it's amazingly relieving to have a diagnosis, but then it will start to hit you that it is neither curable or treatable. They can help you manage the symptoms sometimes, but it never goes away.

I'm here..... pmail me, message me, I'll help you through it.
Spike

Don't Berate,- Educate!
 
 
Barked: Sat Jun 13, '09 8:54am PST 
Well, I still haven't heard back from my NP. I've sent the email several times, but apparently she hasn't gotten it yet. I haven't even been able to speak to her either because she's busy. Before this came up, she wanted me to go see a specialist to get a certaintet done. I mae the appotment with im, but the only time he could squeeze me in was next Thursday before his vacation. I don't know if my NP still wants me to get it done in light of the new theory, and I can't ask her because I can't get ahold of her.

I'm going to join the Yahoo group that you mentioned, but I did a general group search and tuned up quite a few other groups centering around dysautonomias. Do you know anything about the other groups?

I talked to my therapist about the whole stages of grief thing yesterday. I feel curious, in a sort of detached way, how I'm going to react if I do get this diagnosis. You say that after the shiny new diagnosis feeling runs out, I'll realize that it can't be cured. The thing is, with my previous diagnosis, this was already the case. I have already (mostly) accented that I am disabled (even though I hate that word) and it won't ever be fixed. A different diagnosis won't really change that fact. Does this mean I will skip that part or go through the whole thing again?

I guess the big thing about this diagnosis versus my previous one is that my family will be more accepting of it. People in general will be. There won't be any more of this "Oh, get over it, you're just being lazy" talk that my mother is constantly saying to me, and my dad won't have to struggle to accept it. Okay, maybe this won't be the case in actuality, but it seems like it.

I want to write more, but I can't seem to find the words for what I want to say. That, and my joints really hurt.

Harley, SD,- CGC, TDI

Super Service- Boy!
 
 
Barked: Sat Jun 13, '09 4:27pm PST 
I don't know anything about the other Dysautonomia groups. I don't have the time to keep up with the groups I'm in now, but the NCS_F is wonderful. It's not all people with NCS (one type of Dysautonomia) but people with all of the Dysautonomias.
Kipper

*hiccup/burp*
 
 
Barked: Sat Jun 13, '09 9:21pm PST 
Oh Spike!hughug I am here for you if you need me also. I don't know what you are going through but I am here to support you. When I got my diagnosis the "shiny new" feeling wore off really fast. My doctor said that I will most likely only be able to manage the symtoms and will probably need Barkley for the rest of my life. Not what I wanted to hear.
Spike

Don't Berate,- Educate!
 
 
Barked: Mon Jun 22, '09 11:02pm PST 
I finally spoke to my NP. She didn't like my symptom list, thought I was being "too smart." She said since I'm not in the medical field, I should come across as dumber to the professionals I'm seeing. That made me upset. I can't help it if I'm smart or that I know things that the average person wouldn't. The fact of the matter is that I'm smarter that at least of few of the professionals I've seen. She said it's why no one has taken me seriously in the past. I wasn't really sure what to say to that, except to be annoyed. She kept asking me to simplify it, but I don't really know how. Oh, and she told me I should go to college and become a doctor. (Except for the fact that I would never make it through medical school, that I wouldn't make it through "regular" school because of all the bloody symptoms I've been having. Believe me, I've tried!)

She didn't actually give me a diagnosis, either. This made me upset. She doesn't believe in diagnosis but rather in treating the symptoms. That's nice, except for the fact that I would rather treat the underlying problem and you can't do that if you don't know what it is. So what did she do instead? She told me to make another appointment with her in a few weeks, to go see two more specialists, and to stop using birth control. Um. Yea. Did I mention that my periods are so bad that I have had more than one doctor tell me to not ever not use it? Her argument was that I have every side effect of using bc, nevermind the fact that I had these problems long before I ever went on it.

I'm seriously going to just go to the hospital this week and insist on the tests. Or something. I want a diagnosis, but beyond that I need a diagnosis so I can qualify for SSI. If I do that, I can get insurance. If I get insurance, there is a reasonable expectation that I can get my "issues" under control enough to be able to work at least part time. Or go back to school. Or SOMETHING. Oh, did I mention that I am one, read it: ONE credit away from qualifying for disability. That is $1,000 in wages. And you know what? While I was in high school, I worked for a woman who legally paid me "under the table" for nearly four years. She didn't file taxes or anything on my wages because I didn't work for her for more than x amount of days a year -- legally, here you don't have to file if you've worked less than however many days. But you can be gosh darn sure that I made more than $1,000 working for her.

I'm having a bad day. No, that's not it... I'm having a bad life.
Kipper

*hiccup/burp*
 
 
Barked: Tue Jun 23, '09 9:44pm PST 
hughughughugOh Spike........ I am sorry, I just don't know what to say.

I would stop going to the NP and find a differnt doctor. I mean I had a doctor that was accually a NP. I regret this. When the reason we went to her was my mental issues she ignored those, wait no she put me on anti-depressants without corectly diagnoising me (which by the way made me worse!) and then told me when I told her I was having suicidle thoughts to just give them more time!! Anyway she basicly ignored my mental issues and told my mom that she just needed to force me to go to school and that I'd get over it. HELLO!!! Dumb-a$$,,,,,,, but what she did pay attention to was my wieght and my eating habbits, she put me on BC (which makes you gain weight) and told me that I HAVE to stop eating this and this and this and this and only eat so much (to me she was telling me to starve myself), and I thank GOD that I didn't listen to her or else I probably (with my OCD) obbessed about my weight and gone anerixec, or that with my insilin resistance that I would become a diabedic by the time I was 18.

Well guess what lady!!! I lost my weight SAFLEY (well ok I still have like 15 lbs to go but from 170 to 145 (I was size 16 in pants, now I am a 10) in 6 months that is really good), and I learned how to ballance my diet just so that I could have all my favorite foods like pepsi and chocolet and loose weight at the same time. And all I did was stop eating when I was full. (I mean like barley full, not stuffed) Who knew.shrug

Okay rant over.
Spike

Don't Berate,- Educate!
 
 
Barked: Tue Jun 23, '09 11:49pm PST 
Barkley, the problem is that I can't go anywhere else. I do not have insurance, cannot afford to pay out of pocket, and there are no state run-type places to help me. Believe me, I've tried. The only reason I am seeing this NP is my mother's insistance that I adequately try this method. Furthermore, I've had more luck with this particular NP listening to me than any other health care profession I've been to. She is very intelligent and *most* of her ideas exist somewhere in the realm next to my ideas, which again is the best experience I've had.

I'm sorry you had such a horrible experience with that NP. I'm glad that you're losing the weight (I wish I could lose some weight), and that things are going better for you.

hug
Kipper

*hiccup/burp*
 
 
Barked: Sun Jun 28, '09 6:41pm PST 
I was just appalled that she said that to you...... I mean you would think that doctors would like it when you are spicific in your symptoms and know a lot so they don't have to explain it in simple terms.
Harley, SD,- CGC, TDI

Super Service- Boy!
 
 
Barked: Mon Jun 29, '09 10:02am PST 
Spike,

If what you have is Dysautonomia, your doctor will have to treat the symptoms as there is no treatment for the underlying cause, but I do agree that you NEED a diagnosis. If you know what it is, then you can deal with it! If it's not Dysautonomia, then you need to know that so you can get the right treatments!

I also sound "smart" when I go to the doctor, but my better half is a medical professional, so I have learned the medical jargon.
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