What do I do now?

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What do I do now?

Postby Lauralie » Mon Aug 27, 2012 2:30 pm

So, I am a 25 year old white female from the temperate united states climate... suprise I have MS. For almost 5 years doctors were trying to figure out what was wrong with me. It has gotten to the point where I can't take more than 5 bites of food before I can't swallow. I'm afraid one day I'll die from choking before this disease gets any worse. I officially found out I had MS August 10, 2012, the day I moved in to my college apartment.

I'm an adult college student. Today was my first day. I was miserable. I'm 4 hours away from home and this campus is HUGE. I probably walked 5 miles today and skipped my orientation because I just couldn't go any further.

I'm completely torn as to what I should do. I take a bus back and forth to campus and it was packed on the way home. I read the sign "Persons must give up seat for those with disabilities." I wanted to sit in the worst way but I didn't want special treatment. I don't want people to think I'm lazy. Plus I figure me standing when all I want to do is sit is a good thing.

Do I tell or not tell my professors or notl? I reached out to someone in disablity services. I'm pretty good with words still, although I find myself wanting to say things and not knowing how to say them often, it creates a social akwardness, do I explain why I do that so often? My major is bioengineering. To give you an idea... two my classes are biocontinum mechanics with statistical analysis and Biological Thermodynamics. Can you say.... analytical? I knew something was wrong with me when I went from a 4.0 my first three semesters to struggling for the 4th and 5th. I understood everything being presented in class I just had such difficulty with the little things like arithmatic. Ask me to do a triple integral over a surface... no problem. What is "10x14/6-8+42=" It takes me forever to get through the little stuff. And numbers... I had to check the bus schedule 4 times in a row because every time I checked when my class ended and then checked for the corresponding Bus... I'd forget what time my class ended. I waste so much time rechecking things... :sad:

I read that if I have a disability they would "curve my grade." that is so unfair. I don't want to pass or get As due to a technicality. My future employer certianly won't do that. They'll give me longer to test maybe, or assistance walking the mile inbetween my classes to get to different buildings, but do I really want this? Some days I swear I don't have it. Some days I know I do. Today... I know I do. I asked someone the same question twice and they looked at me like I was crazy. My short term memory is just garbage.

My disability advisor I met with today could not believe the lightheartedness I expressed when explaining to her what is wrong with me. I can sit here and have so much apathy to the fact that my brain MRI appeared to show more white then gray. Maybe I'm still in shock, although I don't feel like I am. There is only a little that showed up in my spine. Very small. In one spot. Could it not be MS? My whole body hurts, my balance took a dump, I walk around like a dizzy drunken fool all day, I see spots constantly, I have numbness and tingling on the left side... I mean, it screams MS but don't "normal people" have these symptoms too.

Am I ranting? Honestly, this is coming out so quickly I really haven't been able to talk much about it... well like this anyway. To my parents I keep a strong attitude and don't let them know it bothers me. If I stay strong, they can too. My husband doesn't believe I have it, or thinks I exagerate to get out of things. I don't exagerate... so sometimes when I don't feel good I don't say anything.

My husband... Did I mention I'm married and my husband is living back home while I finish my degree? :-( I'm out here alone. I have honestly never felt so alone in my life as I did on the crowded bus today. It felt like they were all happy and healthy and my body was slowly killing itself... I almost cried. I haven't cried since the day (August 10) I was diagnosed. Since then I feel so jaded. This stupid disease could not have come at a worse time. I'm alone, no friends out here, no family, no doctors, no help.

I don't know if I can physically get to classes. I don't know if I can mentally handle them. I miss my husband, but I cannot go through life without a college degree and financially speaking, this college was cheaper by almost 100,000 compared to a school back home. It is so important to me. I picked bioengineering a few years ago because it is the most difficult degree offered nationwide. I really wanted the challenge... boy did I ever get one.

So... what do I do now?

I read through this before submitting.. I just literally wrote it all faster than I read it. So if it seems scattered brained.. well.. for one I am right now and two, I've just been dying to REALLY talk about it. Or say something to someone who might care, or understand. I feel like my MS isn't bad, but maybe it is and I really am as strong as some people think I am? I'm sorry... I should stop. I could probably do this forever. I just am so lost as to what to do or expect or.. anything.
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Re: What do I do now?

Postby jimmylegs » Mon Aug 27, 2012 3:08 pm

hi and welcome to the forum. i feel your pain! i went through school as an adult and developed my symptoms and got diagnosed half way through.
good idea re reaching out to ds. i ended up telling my profs first, and they told me to get registered with the office for students with disabilities. it had its benefits for sure was able to park in accessible spaces close to the buildings i had classes in. i wrote a paper for a scholarship only open to students registered with ODS and was awarded an extra couple thousand dollars, which didn't hurt. (except for the time spent on it).
had severe pain trying to write and started videotaping my lectures, but one of my profs said i should have arranged to have notes taken by others. i preferred to have them on video and then replayed them back at double speed to type my notes. so that it's recorded the way *i'll* understand it.
on the other hand, i am now 4 years out of classes and still have two major assignments long overdue, so no degree. those were the independent study projects, and the profs let me have soft deadlines. that would have been great if i didn't have this perfectionist personality. so yeah. still working on gettin' er done.
going beyond the pros and cons of accommodations for disability, i had major issues with my throat seizing and i thought i was going to die (randomly encountered and wonderful, excellent pharmacist saved me on that one).
i *also* had major cognitive issues and couldn't remember anything short term to save my life. it's so weird when you can function academically but can't remember a phone number for 5 seconds. i also could barely drive because i couldn't decide if i had enough time to get across an intersection. i honestly don't know how i kept my grades up. but luckily i was able to sort that out too.
i went through for environmental studies, we had to do lots of stats and touched on redox stuff in the context of wetlands (i loved that, realized my body needed more minerals in its 'interior wetland')
welcome to the forum, everyone here gets what you're going through. glad you found us, since you're away from the support of family (such as it is) for the time being!
anyway. my approach has been essentially nutritional internal ecosystem restoration, some call it orthomolecular medicine, some call it functional medicine, whatever. you've got the brain for it so if you're interested, have a read of my 'regimen' thread, link below. ttfn!
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: What do I do now?

Postby lyndacarol » Wed Aug 29, 2012 2:46 pm

Welcome to ThisIsMS, Lauralie. We are glad you found us; we are good at listening – especially to ranting, we have our experiences and ideas to share.

Congratulations on your perseverance. Bioengineering… That must be challenging! If you have already completed five semesters, you are on the homeward stretch – take all the tips and helps you can find to help you finish up. In general, I have only told close friends or people who need to know about my MS; I would say your professors need to know (but you are in a better position to decide on that). Do you have an advisor in the bioengineering department, or perhaps the disability advisor you mentioned, who would offer advice on whether to tell your professors? In fact, those advisors might have suggestions on how you can find friends and support group where you are now. Is there a local MS Society support group? Are you connected to a local church which might help you? Maybe there are campus groups which could help? As for the problem of physically getting to classes, check with your college administration – I know some colleges are well designed to solve the problem. I am best acquainted with the University of Illinois at Urbana-Champaign; it is VERY well set up for disabled students.

Get a cell phone or telephone plan with MANY free long-distance minutes and talk to your husband every day. Encourage him to visit you as often as possible or maybe you plan to go to him on the weekends. Of course, you miss him, but I'm sure you discussed this plan and decided you could do it – and so you will. Call old friends and family who will be supportive of you. I am just sure that you can complete your college plans – in my opinion, college is more perseverance than anything else. If necessary, slow your progress, take an extra year to finish.

As a 25-year-old, you know this new experience will take an adjustment; and the situation is only compounded by your recent August 10 official diagnosis. I believe you ARE stronger than you think right now. We do understand and we do care. Remember, we are good at listening – please let us know how things go.
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Re: What do I do now?

Postby NHE » Thu Aug 30, 2012 12:07 am

If you're not doing it already, then I would recommend that you get a digital voice recorder so that you can record your lectures. Later, you can listen to the lecture as you review your notes to make sure that you didn't miss anything and make your notes more complete. I did this in college and found it very helpful for studying. I would also often relisten to the lectures as I was doing other mindless tasks such as the dishes for example.

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