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After Vandy


Dizzy Dame
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Hi all,

Well, I came back from Vandy this week. I was put on midodrine, and given a new prescription for physical therapy. I thought the visit would change things but it really hasn't. I still have all the same symptoms I had before I went, and the midodrine only helps marginally (now I can stand for ten minutes as opposed to three...yay).

Not only that but I'm horribly behind at school from being in the hospital, and I have no friends because no one wants to talk to the girl in the wheelchair.

I just thought Vandy would change things, or at least give me the confidence I need, but none of that has happened. Now it is sinking in that THIS is my life. I'm not going to spontaniously get better, and I'm not going to find a pill that makes any substantial difference. I'll never be able to go out dancing at night clubs, or go hiking, or surfing, or riding again. Even Dr. Biaggioni said that my case was bad enough that he doesn't expect a full recovery.

For those of you who've been sick with POTS for a long time, how do you cope? It's only been eight months and already I want to die. Normally I'm such a cheery person, but this week has been really hard on me. Any advice will be greatly appreciated.

Thanks,

Lauren

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HI Lauren,

I am sorry your dreams are shattered.

I think we have to set different types of goals:

1 - the short-term: Realizing that for now this is your life and make the best out of it.

2 - the long-term: Hope that researchers will find more about our disorder and eventually have better treatment and improve our quality of life.

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I'm sorry you are having such a bad day.

I do understand your feeling "down and out" but I also want to offer some encouragement. While it's true that you don't yet have your "miracle pill" it doesn't mean you won't ever have it.

You've only been back a week so it's too soon to know if the medicine will help you more in time. It may take many months of adjusting the med, adding another med to your combo to get better symptom control etc. All I'm saying is I understand your disappointment but don't shut doors in your life yet. You may not feel better after doing all of this but then again, months down the road they may come up with something for you. Some people are sick for a very long time and then start to feel better others do not and at this point none of the researchers have enough knowledge to know why some get better and some do not or who will get better and who will not.

I agree with Ernie about the goals. I've been dealing with this disorder for most of my life but especially the last 8-9 yrs. In the last 8 to 9 years I've had some periods of time where I was able to work and function much more like a "normal" person and then I've had periods of time where I have not been able to do much but lay around.

My experience is that I do best if I focus more on what is immediately in front of me. I try to find ways to make the day I am currently living more enjoyable and comfortable and I may look at the rest of that particular week but I don't try to focus much further out than that simply because the illness is too unpredictable to make plans. At times when I've felt and done better then I do make more long term plans and goals.

I do understand your pain and frustration though.

Hang in there! I'm sending (((HUGS))) your way!

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Your feelings are probably the normal let down after a big event. I always get depressed Christmas evening but this of course is much bigger emotionally. I go to Vanderbilt in two weeks and I know that once it is over I will feel the same way you do. However, things have changed for you since you have been seen by some of the leading authorities on dysautonomia. You know you are really sick, you don't have to listen to every ignoramous dr. or layperson who tells you nothing is wrong. Even more important is that you don't have to listen to yourself when you tell yourself you are not trying hard enough or just wimping out, I do that to myself constantly. Since you have been a research patient you may be in a position to receive experimental drugs that just might work. It may be a ways off but the positive side of being diagnosed at a young age is you have time. Look into getting counseling on how to adjust to having a chronic illness. I know for a student this can be cost prohibitive but see if your school offers counseling or at least suggestions. The counseling should center around not blaming yourself for your condition and trying to work with it and learn when you are doing too much.

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Lauren,

I'm not in your age bracket, but I can totally relate. I, too, after about 4 years, am trying to come to grips with the fact that I am not getting any better. As a matter of fact, I think, over time, I'm slightly worse.

I usually cope rather well by using the "one day at a time" technique.

But recently, with my daughter pregnant with my first grandchild, and she living across the country from me, I'm realizing what obstacles my poor health is putting in my life.

The trip almost seems out of the question. I'd love to be in the birthing room with her (if she wants), but that is out of the question. I'd love to help her, but that is out of the question, etc, etc.

This is all very hard to adjust to. My symptoms are totally unpredictable. It's really stressful with no one else realizing just how difficult my everyday life is.

I'll probably need to start seeing a counselor to help me cope with "my new life". The only thing that has kept me from seeing a couselor up until now is that I did not want it on my medical file so that any doctor could then blame my symptoms on "mental problems".

I feel for you and I understand what you are going through. I feel like my life is a "bunch of lemons" and I'm desperately trying to make lemonade. Trouble is, I have no energy to make it!

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I'm sorry you are going through this Lauren.

No matter how much we want not to have high expectations, we just do sometimes, then the letdown is miserable.

I subscribe to the one day at a time theory too. Sometimes it seems to be hour to hour. :lol: I have been sick my whole life, but really sick about 5 years now. I just know some times are going to be bad and some times are going to be worse.

I hope that in time, you will be able to adjust to your limitations and be more accepting of living with a chronic illness. My son has been sick since he was 11, so i do have some understanding of the impact this has on younger people. It's not fun at any age.

Hang in there, get over this hump, and know many people are sending you good thoughts! morgan

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Hi,

You have all of us as friends!! I do know what you mean though about the whole friend thing. I'm not in a wheel chair and it's still hard to find friends who understand all of this. As for the meds, maybe within time they will help you out more. Vanderbuilt may not have helped you out as much as you thought it would, but since they are doing research for POTS, you have untimately helped all of us out in hopes that they can figure out more about POTS.

Keep your head up in the meantime, I hope more good days come your way! :lol:

Jacquie

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Hi Lauren,

I know that dealing with POTS can be really tough. But hang in there. You are just getting back from Vandrerbilt and you might start to feel better after your body adjusts more to the new med and you get into regular PT. If midodrine is working for you, maybe you could talk to your dr about taking a higher dose in a few weeks. And I am sure you will start to make more friends at school in a few weeks too.

My POTS is not as severe, but I'm certainly not clubbing these days either. :lol: The way I have coped is by setting really small goals for myself and keeping at it until I met them. At first it was practicing walking and trying to walk for a a couple of extra minutes each week. Now that walking isn't so much of a problem for me, I am trying to exercise more and ride the bike for a few more minutes each week.

Science will keep advancing and coming up with new treatments. And there are always other doctors that might be able to help, like Dr. Grubb. Do you have a good local POTS doc that can other different meds with you?

-Rita

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Hey Lauren,

I am so sorry. I wish I could give you something to help! I keep trying to think of what has helped me but I have been sick since I was little (some times worse than others) so Its not like I had a life 'before' dysautonomia...

I know I have learned to turn my brain off...At one point I even got some lincon logs off the internet and whenever I started stressing over what I could not do, how I was not cut out for life here...etc.etc. I would play with the toy. It is kind of silly, but it worked.

I also adopted a love of self and a general attitude that I am right, what I feel is correct and whatever anyone says about it is inherintly flawd. (harsh, but it can be useful.)

As for friends...I know....

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Lauren,

I'm so sorry that Vanderbuilt wasn't able to offer you more for treatment. How very dissapointing. You have so many changes to try to adjust to as well right now - a big move, new school, and trying to figure out and work with your new limitations- things must be very difficult. You have some major life changes to adjust to. It will take you some time. But you will get there and things will improve.

I had a horrible time when I first developed Pots. I was completely where you are now. And I absolutely still am there some days. But now, I have alot of days where I feel "OK" where I am at. I'm still not happy about it, but I can accept things more and feel more content now.

So far, no meds have worked for me in the least and I haven't been able to get much relief. That makes me feel very angry and frustrated and hopeless at times. But I push on because there really isn't anything else to do, and eventually things start to settle again and I feel a bit more accepting of how things are. I hope this will happen for you as well.

All you can do is work your way through it. You are a strong and lovely person and I've no doubt that life will improve for you, even if your health stays where it is. Most of all, be sure to talk lots about things and get things out. Sometimes when you can't change things, talking and working things through can help alot. You've got all of us here to help with that part! Laura

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hi lauren,

i am sorry that you're feeling this way. i think i've been there a thousand times. with every new med and every new doc i'm hoping to recover. not even a full recovery but at least a bit!

but i'm with ernie: you have to change goals. take one day at a time and try to get a goal for that day. when you achieve what you wanted that day you can be proud of yourself. and maybe you need counseling to learn deal with chronic illness. it isn't easy but i always find something that helps me through the day, like a beautiful flower, or the sun shining or one of my kids saying something sweet.

hope this helps a bit,

corina :)

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Lauren,

Please don't give up hope of getting better. Just a year ago, I felt next to dead (the doctor was very concerned as well) I couldn't turn my head or change position without the world going black on me. I had shockwave chills (really shock, bp readings from Mars), hypoglycemia, constant vomiting etc etc. I'm not exactly in remission now, but I'm in a much much better place. I'm able to think about going back to work. Yeah, there are days that I crash, but compared to where I was, it's so so much easier. I am now wheelchair free. So yes, maybe there is no magic wand for now to make it totally go away, but you definitely have hope of doing "normal things" in due time.

As far as the isolation, do you have anyone at all who is willing to take you to parties, social stuff wheelchair and all? Some students did that for me when I was housebound/wheelchair bound and it made a huge difference.

Sending love,

Ariella

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