Breakdown

CollegeGirl · Post by **CollegeGirl** » Mon Nov 07, 2005 5:38 pm

I think I'm about to lose it. All I want to do is fall to the floor, curl up into a litle ball, and cry myself to sleep. I am so, so frustrated it's unbelievable.

When the semester started back in the beginning of September and I first got back to school, I called the sleep doc (the only one in the immediate area) and scheduled an appointment. The earliest they had was Nov. 18th. I told them it wasn't that big a deal to wait, but to please call me with any cancellations, as my mask was not fitting properly and was uncomfortable. The mask started fitting worse and worse. The brain fog came back. The daytime sleepiness came back. I called the doctor. No cancellations, but they'd let me know. I started missing classes. I started becoming unable to complete assignments because I'd fall asleep trying to do them. I started getting more and more behind in my classes. I called the sleep doc again. "Have your GP fax us something saying you need to be seen urgently (ASAP)." I call my GP; he faxes that over right away. Five days later, still nothing from them. I call them. "Oh, the doctor's on vacation and won't be back for a week." Today, he comes back from vacation. I call them again. "Oh, he's back, but he hasn't given us a time for you. We haven't had a chance to talk to him yet." I reiterate that I'm about to go from a straight-A student to failing all my classes. It's like it doesn't even register. "We'll talk to him and give you a call."

I am so, so exhausted. My mask is more comfortable where the straps are (thanks to my Pad-A-cheeks) but the part where the actual mask touches my face stays red, like permanent, deep scratches. I can't get anything done and I'm so scared I'm going to fail all my classes. I'm at the breaking point, and I don't know what to do. My teachers have all been patient once I explained my situation, but they're losing their patience, and I feel like I'm losing my mind.

biggziff · Post by **biggziff** » Mon Nov 07, 2005 5:46 pm

Personally..I'd contact the state medical board and explain what is going on. See if they have any ideas for you.

Guest · Post by **Guest** » Mon Nov 07, 2005 5:56 pm

Sleep apnea is a disability according to the US government. And for good reason: right now you are "disabled" from performing satisfactorily in you studies. Most universities will actually intercede or facilitate on behalf of those students with disabilities who require additional accommodations, time, or other resources because of their disability.

Be sure to contact the administration at your university to have them facilitate a solution with you and your professors to get you through this difficult period in your studies. You definitely need some extra help from the university here, College Girl. Ask and in all probability ye shall receive!

herefishy · Post by **herefishy** » Mon Nov 07, 2005 5:57 pm

If you're having mask issues, shouldn't you be talking to your dme, not the sleep doc? That's where I would be.

Babbie · Post by **Babbie** » Mon Nov 07, 2005 6:26 pm

College Girl - I agree with the guest--do you have an advisor there at school? My daughter also attends college and she has one. If not, there's got to be someone in administration that can help you. You're not doing this because you've been partying all the time - you're physically ill because you don't have the proper equipment that you need. Take heart - hang in there---lots of us care how you're doing. Keep posting!!
Kathy

CollegeGirl · Post by **CollegeGirl** » Mon Nov 07, 2005 6:35 pm

My class dean has already interceded on my behalf. However, she can't FORCE my teachers to give me extra time on things or to not count my absences against me. They've been patient with me, but as I've said, they're losing patience, medical issue or not. I go to a very competitive school - let me put it this way: There was a girl in my English class who was back in class a week after her mother died unexpectedly. People just don't miss class or get behind here, and it's killing me.

Herefishy, I should have mentioned - I went to my DME before I contacted my sleep doc, but they couldn't find a full-face mask that would fit me without leaking, and referred me to my sleep doc. At first I was pissed, because I thought it was just laziness on their part (and I still think it is), but now I know there's more going on than just mask issues, so I'm (in a way) glad they told me to go see him. If I can just ACTUALLY get in to see him! All I can say is, he better be competent!

yawn · Post by **yawn** » Mon Nov 07, 2005 6:51 pm

CollegeGirl wrote:My class dean has already interceded on my behalf. However, she can't FORCE my teachers to give me extra time on things or to not count my absences against me.

That isn't necessarily true. Do you have a "Disabilities" Department? There's one at my daughter's college and they have been VERY helpful with her issues. I would also STRONGLY encourage you to see if you have a mental health department....maybe you could go to your student health center for more info. on this. Either one should be able to assist you through all of this. You have a medical condition and they need to help you. Please try and get some help...if nothing else, start with your RA...ask him/her to help you get started. Hang in there....it will get better!

Amy

Sleepless on LI · Post by **Sleepless on LI** » Mon Nov 07, 2005 7:49 pm

College Girl,

Is there a reason you say you need a full face mask? I wouldn't worry about getting a full face mask at this point unless there is a really important reason you must use one. I think right now, you need to do something to get yourself out of this jam, even if it means trying a new type of mask that might get you some rest.

My heart goes out to you. I know how awful it feels, as do we all, to feel so exhausted, plus you were making progress and I'm sure you feel like it's all gone down the tubes. But it hasn't and you will get through this.

Is there another doctor you can go to in your area? Otherwise, what my pushy LI butt would do is, show up at the office and don't leave until he sees you. Tell them you've waited past the length of human endurance for them to schedule you, even after abiding by their request that you fax over a letter of urgency, this is not a joke to you and you MUST be seen then and there. Watch how they squeeze you in.

In the meanwhile, try to stay calm and know this will work out. It's frustrating, I'm sure. But it will work out. I'm telling you, just show up tomorrow. But make sure you know their hours before you waste a trip down there.

Guest · Post by **Guest** » Mon Nov 07, 2005 8:22 pm

I'm under the impression that your college must accommodate your disability if they are to remain compliant with federal law. There may be an administrative department at your university that is even better versed in handicapped accommodation than your dean. There may even be a student ombudsman who can also facilitate this issue on your behalf.

In all honesty your disability-related difficulties will likely extend beyond the amount of time it takes to acquire a new mask, College Girl. There is a challenging CPAP acclimation period that can take some of us weeks if not months to get through. During that acclimation period it is actually possible to be even more sleep deprived than when you were untreated. It's important to stick with CPAP until you can get through that period. And it's important to make sure your university extends reasonable accommodations to make sure you can get through this difficult acclimation period of your disability.

Born Tired · Post by **Born Tired** » Mon Nov 07, 2005 8:41 pm

CollegeGirl wrote:I am so, so exhausted. My mask is more comfortable where the straps are (thanks to my Pad-A-cheeks) but the part where the actual mask touches my face stays red, like permanent, deep scratches.

College Girl,
So sorry to hear that you are having such a hard time. College can be a tremendous challenge with the best of health.

I use to use a FF mask--tried the one you have and also used Ultra Mirage FF for a while and had the same red pressure areas--sometimes so bad they wouldn't go away for 2-3 days (even when I would go without using CPAP for a couple of nights to give it time to heal.)

The Activa was less of a problem but still leaked for me unless I tightened it down more than most. Didn't seem to fit my face well. There are several good nasal pillows that people here like. The Aura has been a lifesaver (so to speak) for me. Very comfy and seals great for me--even without Rested Gal's pantyhose fix (I did use that for the first couple of nights but don't need it now.) I do have to use a chin strap but that is way more comfortable than the other masks. Aura is great for side sleepers. The only negative I have experienced with Aura is more tendency to rainout (for me even with my nice heated hose), and a bit more air vent noise than some.

Hope things get resolved very soon. Will be praying for you.
Esther
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Sleepless on LI · Post by **Sleepless on LI** » Mon Nov 07, 2005 8:50 pm

Esther,

Sounds like you and the Aura...Everest...Headrest...whatever they are calling it nowadays, are getting along just smashingly! I am so happy you ended up liking it so much. If I remember correctly, though, aren't you on a low pressure? It is absolutely a perfect interface if you are lucky enough to be on a low pressure. I think the higher the pressure, the more chances of having to adjust a bit more. But then there are people like Wading who use it ROOTB and have no problem with it.

Oh, yeah, by the way, my new acronym, ROOTB = right out of the box. I've typed it so much recently that I decided to shorten it. Hey, everything else has an acronym for it, so I made up my own!!!

Glad to hear you're doing so well. Has Esther become a morning person yet???

another_guest · Post by **another_guest** » Mon Nov 07, 2005 8:52 pm

without knowing the school involved I thought I might put in my 2 cents worth

yes federal money is out there over the head of most colleges/universities and they are required to make "reasonable accomodations" - some will bend over backwards -

where I had taught there was a student disability support administrator - she handled most of the work with the students, wrote form letters which the students would deliver to the faculty invovled - she got information from the students' medical providers (doctors, therapists for example) or some sometimes the information such as learning disablities would come from the students high school. as a faculty member I was required to abide by what she told me was reasonable accomodation for the student involved - I wasn't allowed to ask what the specific disability was but sometimes the student would volunteer that

we also had a student services office, a student counseling center, a psychology clinic, as well as a student health service

I also found that some academic advisors were pretty unknowledgable about where to send students with problems - residence hall RA's and hall directors were much better

if there is a student handbook then look there for what your schools has to offer

Guest · Post by **Guest** » Mon Nov 07, 2005 8:55 pm

I suspect College Girl's academic life may become much more manageable if she can present her professors and dean a written proposal of how they might accommodate her current disability-related circumstances.

Does anyone know if there are written guidelines anywhere regarding sleep apnea accommodation in the school or workplace?

For lack of existing apnea-related accommodation guidelines, do the fine members of this message board have any suggestions? What accommodations would you deem reasonable for students going through a challenging CPAP acclimation or other apnea-related difficulties.

This is a friendly call to arms, fellow hoseheads! We should not watch one of our own fall from straight A's to unnecessarily worrying about academic failure. We want our fellow hoseheads to become valuable contributors in society don't we?

I'm sure there are plenty of other apnea students who can use these suggestions as well.

S.O.S.
(Save Our Selves!)

ProfessorSleep · Post by **ProfessorSleep** » Mon Nov 07, 2005 9:10 pm

I think the suggestions about seeking the student help center, or whatever they call the office that deals with special needs, are excellent. What personnel in those offices often do is identify with the student what the specific needs are and what accommodations are appropriate and reasonable. The student has to reveal the details of the problem situation to them, but not to the professors. The student then hands documentation provided by the accessibility center (what it is called at my place) and the professors are obligated to do whatever they say. A Professor really doesn't have any inherent right to know what medical or other problems a student has, only that they have gone through the center and have documentation of their need.

That said, your professors already know a good bit about your situation it seems. The ability to make adjustments depends on the classes and the discipline sometimes. Some things, such as supervised field experiences, are just really hard to make up. Rather than jeopardize your grade, though, if you are in that much difficulty already, can you negotiate for an Incomplete and make arrangements to finish up the work by a certain deadline? At the very least you probably would qualify for exigency for a late withdrawal so you could withdraw without penalty (though probably without a refund at this date - policies vary). I would think that is an absolute last resort, but it is an option to expunge any less than satisfactory grades from your record for this semester and thus not jeopardize your GPA.

You've done the right thing by letting people know - I agree about trying some other sources of assistance and exploring all your options. Good luck to you!

Born Tired · Post by **Born Tired** » Mon Nov 07, 2005 9:10 pm

Sleepless on LI wrote:Esther,Sounds like you and the Aura...Everest...Headrest...whatever they are calling it nowadays, are getting along just smashingly! I am so happy you ended up liking it so much. If I remember correctly, though, aren't you on a low pressure? It is absolutely a perfect interface if you are lucky enough to be on a low pressure. I think the higher the pressure, the more chances of having to adjust a bit more. But then there are people like Wading who use it ROOTB and have no problem with it.

Oh, yeah, by the way, my new acronym, ROOTB = right out of the box. I've typed it so much recently that I decided to shorten it. Hey, everything else has an acronym for it, so I made up my own!!!

Glad to hear you're doing so well. Has Esther become a morning person yet???]

Lori,
Yes I really do like my "Aura...Everest...Headrest...whatever they are calling it nowadays" and use it "ROOTB" now. Not sure exactly how high my pressure is going. Just been using the Remstar Auto Cflex less than a week now. Set at 5/12. Am waiting for the card reader. I do have a lower pressure than most though--the highest I've seen it go is 8 but don't know what it is doing during REM. They had me on 9 for REM during one of the 2 titrations. They actually had me on 16 at one point but it was about to blow my brains out and I couldn't exhale --I'm sure that was unnecessary. I'll try to remember to mention that it may not work as well for those on higher pressures whenever I recommend the "Aura...whatever".

Can't say that I have become a morning person yet, but I'm still working on it!!
Esther
Guess I can't say it is ROOTB since I did have to shorten the back strap to fit and bend the nasal loop.
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CPAPopedia Keywords Contained In This Post (Click For Definition): cflex, Aura, auto