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 Advice about driving, jobs, etc.?

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Paper_Mache
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PostSubject: Advice about driving, jobs, etc.?   Sat Oct 27, 2012 3:55 am

Advice about driving, jobs, etc

So I'm still in school, but I want to get a job. Everyone I know has one already. I feel inexperienced, and I worry that when I get out of college it'll be hard for be because I've never worked before. Thing is, with IIH, I have no idea how I'm supposed to do this.
Number 1 problem: transportation. I live in a small town. There is one bus here that makes a trip from here to the next town at noon and returns at about 6 in the evening. I can't drive. My fatigue has gotten to the point where I fall asleep randomly in the middle of tasks, and I simply do not trust myself behind the wheel of a car anymore.
Number 2: I don't know how well I'd be able to handle a job in the first place. I have trouble staying awake for long periods of time. Usually after a 4-hour day at school, I need to come home and take at least a 2-hour nap. I can push myself to stay awake until about 5 in the evening, but after that I'm out, and if I don't crash, I definitely don't have the energy for homework or anything requiring effort.
I just don't know what to do... I feel so behind, you know? Everyone else is doing so many things, and if I don't start somewhere, I worry that I'll never get off the ground. I don't want to be living with my parents when I'm 25. But I figured since you guys have experience and know what it's like to go through these things, you might at least have some advice... Regardless of whether I can get a job now, I'm going to need to do it someday, and there's no guarantee that these things will have gone away when that time comes. How do you get around these issues?



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Wylee
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PostSubject: Re: Advice about driving, jobs, etc.?   Sat Oct 27, 2012 4:50 am

Ana, it sounds as though your IIH is not under control, yet. Your symptoms are still affecting your ability to do your daily activities, so more needs to be done. Once you feel closer to "normal", you should be staying awake in class, able to work and have the life of a teenager, not a grandma. Please contact your ophthalmologist and neurologist and tell them that your symptoms are still very much present. You were going to keep a log starting back in August. Were you able to do that? Have you noticed any particular triggers? Of course, there is always the chance that the diamox is giving you issues, or there could be some underlying thing going on to. What ever it is, you need to find out and get treated so you can get back to being a kid.
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PostSubject: Re: Advice about driving, jobs, etc.?   Sat Oct 27, 2012 5:35 am

Thanks for the response. I have been keeping a log since August. Not very detailed, but I've been tracking my symptoms and noting changes. I think I'm doing okay with the diamox, though. I feel like most of the major side effects are under control, though occasionally they do take me by surprise. My neuro has brought me from 500 mg a day to 1000 mg, and I'm almost done with that round. I see her again on the 10th, and I'm trying to schedule an appointment with the opthalmologist before then. I'm quite apprehensive, though, to be honest... I definitely don't see or feel any (good) change, and the last thing I need is to risk a low pressure headache with another spinal tap... This is all so overwhelming.

I just don't know what I'm supposed to do with myself. I had hoped so much that the diamox would take care of things and I would be ready to get back to life at least within a year, but at this rate it could take a lot longer. And if diamox doesn't work, what then? I can't afford to miss so much school for spinal taps or take so many days off because I need to rest/adjust to new medication. It's just so hard. I would almost rather accept things the way they are now than go through all the pain of treatment. If I have to do more than I'm doing now, there's just no way I'm going to be able to handle anything, even school. I would really love to get this treated and have a chance to be a kid, but what if by the time I'm better, there's no time left for me to be a kid? I feel like the longer I wait to go to school and get a job, the harder it will be for me to accomplish anything - even if it is for a good reason, other people don't really understand that... No one's going to wait for me to get better... I'm kind of venting now, I guess, but I'm just so confused about what I'm supposed to be doing with myself, and what I'm supposed to do if things don't start getting better.



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Wylee
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PostSubject: Re: Advice about driving, jobs, etc.?   Sat Oct 27, 2012 5:52 am

Oh Ana, I feel for you. You are too young to be saddled with this!

When you speak to your doc next month, express your concerns. It may be time to start thinking about alternatives. Have you discussed this with your docs? If you have not, then I would say it is time to do so. You are so very right about time passing you by. Time to try to stop that. Get your docs back on working to get you well. You may need to be assertive. Tell them you aren't going to settle for life as it is now. You need, want and deserve better. Time to start the next plan.
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PostSubject: Re: Advice about driving, jobs, etc.?   Sat Oct 27, 2012 6:06 am

I will bring everything up. I've got quite a list of things to talk about with my neuro, hope she's ready for an earfull, haha... I just worry about how long things will take and how much worse I might have to feel to get better.
Out of curiosity, what kinds of treatment have you tried? And have you had any success?



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Wylee
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PostSubject: Re: Advice about driving, jobs, etc.?   Sat Oct 27, 2012 6:17 am

I would have a lp and then follow up with different meds and different combos of meds trying to find something that would keep my pressure down. We ran out of meds to try and so did a lumbar drain test to see if I was a good candidate for a lp shunt. Well, I passed that test, so my surgeon said the next step was doing the shunt. We decided to do the lp shunt, had that done Nov 1st of last year, and it has made life much better for me. Still tweaking it (adjustable valve) but getting better. It has been a good path for me.
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PostSubject: Re: Advice about driving, jobs, etc.?   Sat Oct 27, 2012 7:23 pm

I completely understand your concerns and have to admit I do still feel "behind"at times. I had multiple health issues, so it took me a few years to get back on track. Fortunately we do have vocational rehabilitation opportunities available through the government. It's called something different in each state, but try googling it. They basically do an assessment of your education and skills, then train you and walk you through the whole process. They teach you how to interview, do a resume, take you to pick up and drop off applications, set you up with internships and paid experiences until you're physically and mentally ready. They even worked with my physician and therapist. It was a terrifying, but amazing experience.

I guess I'm saying that once your symptoms are under control there are people in place to help you get back on track. You really just need to give yourself a break..your job right now is getting healthy! You'll have time for everything else once you're feeling better..hang in there!!!
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PostSubject: Re: Advice about driving, jobs, etc.?   Mon Dec 31, 2012 8:07 pm

Ana, how have you been doing? Have you found any relief from your symptoms?
Are you working? going to school? I hope that you are feeling better by now and have been able to start having a life!! Please update us when you can.
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PostSubject: Re: Advice about driving, jobs, etc.?   Wed Jan 16, 2013 4:50 am

Hey,
I did update in a recent thread that my papilledema has been improving since I started the Diamox. I have also had fewer headaches. I'm not having any relief from the fatigue and mini blank-outs I have daily, though, so my neurologist believes this may not be directly caused by the IIH (though possibly made worse) and has set me up with a sleep specialist. I'll be seeing him on the 21st, and he will decide if a sleep study is needed. Other than that, there hasn't been any change. Still need the same amount of sleep during the day, still tired all the time and unable to drive. Keeping up with school to the best of my ability. All I can do is wait.



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