where i'm at (or not at)

[Sunfish]

okay folks, i'm going to try to stay positive here.

it's a struggle at the moment.

just thought i'd check in re: where i'm at.

if anyone else knows, i'd be happy to hear

on a good note, i rec'd a call yesterday morning to see if i could make an afternoon appt with dr. shields (neuro who specializes in autonomic neuropathy) at cleveland clinic. i'd had an appt in january but they had a cancellation. so i got myself there yesterday and i was pretty pleased with the appt. it was particularly good timing b/c of my mestinon issues last week. he affirmed that it definitely sounded like that's what had happened - my GI tract not properly handling the Mestinon XR & thus in effect having an under, then overdose. he says he's seen it before, that the XR pills can be inconsistent in folks without GI issues, & even more problematic in those with motility issues. so....i at least like having some sort of explanation...and i'm going to work up to the higher dose again but with the regular pills. and he's totally cool with working with dr. grubb (and has other shared patients). he also wants me to do a sleep study & have the QSART testing done, as well as a few other things...one of which i'll post separately as i found it super interesting & it has an article to go with it.

he's also going to try to help me get set up with access to outpatient IVs through the neuro/headache center as they have an infusion team for those who need IV migraine meds. this would be great since there are no close urgent care places & i won't voluntarily go to ERs for fluids...not a good use of anyone's resources in my book. hopefully this plan will work.

that's the good/encouraging stuff.

on the other side of things, i'm struggling big time. my ear started hurting monday so i called & got myself to the campus health center only to find the elevator broken. i had to scoot up the steps with help...it was SO embarrassing & frustrating, not to mention exhausting. the infection was only external (i.e. ear canal) & while my drums appeared fluid-filled, the doc didn't want to put me on antibiotics if not needed as i've been on them 4times since august between UTIs & ears. so we started with just drops but with no improvement (& worsening of pain) i was supposed to go back today. so the elevator should be fixed, right? especially since it broke friday. this is the campus health center....sort of something that should be accessible, no? not at all. i did call first & was pretty clear about my frustration & the fact i really didn't care to deal with the having to be helped up the back steps again. and it got me thinking about the other messes on campus. like the fact that i can't park anywhere but one location & yet the "assistive transporation" to get elsewhere is slow & more importantly unsafe. and likely illegal. (when in a wheelchair they wheel you up a ramp into the back of a mini-van with NOTHING to secure you & say hold on.) it's ridiculous. i ended up speaking with someone from the provost's office about the elevator situation and whatnot but i still had to go & sit in the hallway with the snack machines to get my ears looked at. and the doc was like "wow. i'm really surprised things could get that much worse in two days." both ears are now a mess inside & out. so now i'm on antibiotics - again - and still need to get my midterm paper finished that was due last week. ggggggrrrrrrrrrr.

oh...and as a bonus....when i was picking up my eardrops from the drive-through pharmacy monday i got reprimanded for "loitering" b/c of waiting in my car in the spot the person at the drive-through told me to wait for around 5 minutes. i was laying in my car & was startled by a cop knocking on my window, who then proceeded to run a check on my ID. i look like a criminal, ya know. one who's trying to score some ear drops

ah yes....and then, b/c i'm really struggling with all this crud i tried to make an appt at the counseling center at school...largely to vent about the issues on campus....and surprise, surprise....i can't park anywhere near the center so it's essentially useless to me. nice, eh? and i honestly don't feel safe using the transporation when i'm in my chair, which i have to be using right now if i intend to avoid hitting the pavement b/c there's still long distances within the buildings.

fighting all these messes takes all the energy i have, which i need to be putting toward taking care of my health & my schoolwork...enough of a struggle at the moment. hard to do though when getting to the health center is such a mess. and as the weather gets worse i'll be able to access even fewer places campus wise.

ok....par for the course...i've rambled quite a bit. i obviously never took a course in conciseness. thanks for bearing with me. tomorrow i'm off to CC again for urology fun. i know you're all jealous!

melissa

Edited October 29, 2005 by Sunfish

[dizzygirl]

WOW!! Melissa..

you certainly have alot on your plate..

I am glad that you are able to get into the clinic tomorow.. that is fantastic!! good lcuk with all that!

about mestinon.. I had a great deal of problems on the XR timespan Mestinon.. I was taking 180mg one in the morning and one in the evening... and OH my... things were not good!!

I am now down to 120mg 3x's a day.. is till have some trouble on that dose.. so it needs to be tinkered with again..

I hope that you ears feel better.. I know last week I ended up sick.. ans spent the day in ER saturday.. comes to find out that both my ears are very infected.. and I have s sinus infection as well as acute brinchitus.. they gave me antibiotics.. ears drops.. whcih are working better then the antiobiotic) and an inhaler to keep the airwaysopen.. plus vicodin for the chest pain.. of all things..

you can try stuffing cotton balls in your ears.. it will help when you are outside w/ the wind blowing and stuff... sounds weird I know..

just wanted to say that i hope that things improve for you and that you start to feel better and that things get worked out as far a school.. and that your mestinon gets aquard away too

hang in there

[DancingLight]

oooh, i was just wondering how you were doing and glad i logged on just now to catch this thread!

hey, if you want, Ernie will teach you brevity! she is VERY good at it! she has tried very hard to teach me...i am trying soooo hard to learn!

lots of love,

love, em

[corina]

Ohhhhh Melissa! What can I do to help you??????? I really wish things were easier on you. Well, I'm sending you a big hug and the sandman for giving yu a good night sleep, maybe that will help a bit!

Corina

[Laura]

Melissa, I wish things didn't have to be such a struggle all of the time. It's hard enough just getting through the day alot of the time, without all of the extra complications. You've certainly been having alot of those! I felt exhausted for you just reading about your recent experiences!

I am really glad that you have found some doctors to care for you! It's scary not to have anyone to go to when you've got some big things going on. I hope things will get better for you at school and with your health over the next while! Laura

[Dizzy Dame]

Melissa,

I'm sorry you're going through so much crud right now. It kind of pushes the limit of the cliche "what does not kill us makes us stronger"

I really hope things start getting better for you and your ears stop acting up! And shame on that cop picking on you? I guess there's been a rise in ear-related crime in the area (LOL)

- Lauren

[Ernie]

Hi,

I am glad that you found a doctor who is taking charge of your case. One less thing to worry about.

I was reading your experience and was wondering if one day it will be possible to have an "easy" day. Just to be able to park and walk, wait in line, you know, just do like everyone else. Sometimes it seems that we have to struggle for the simplest thing.

Hope things will get more simple at school.

[Guest Julia59]

WEll-----it's good to hear you have an appointment with a good neurologist--Dr. Shields....................hopefully he can help you with your autonomic neuropathy.

That would definately be a big weight off your shoulders, you certainly have had enough on you plate lately, it would be nice to see you get some relief from some of this.

I just can't believe how bad the service is on campus for you---it's just not acceptable. I remember my Close friend who has now passed away (very bad case of MS)---she used to get so upset that there wasn't enough handicapped accessibility to many of the places we went to. We had quite a time trying to get her into buildings. She was not able to walk at all--- so even if she wanted to, she couldn't help. I didn't know how bad it was until I saw what she had to face every time she had to venture out.

I used to drive her handicapped Van---it was old and difficult to drive. One time I thought we were going to tip over in one of the parking garages downtown--- ---she was so cool about it and told me---don't worry it won't tip--it just feels that way........

Could you score some ear drops for me too-- That's just crazy---some things never stop surprising me.

I can only imagine how difficult it is for you now. You have really forged ahead despite all the obstacles in your way---I'm so proud of you.....

Keep trying to hang in there.

I hope you have better luck with the counseler---and hopefully get better access to your classes----better transportation ect. This just isn't right---there must be quite a few on campus who have some kind of difficulty getting around----so I don't understand why they wouldn't have better accommodations for all of you.

I hope you feel better soon...... how are your ears feeling now---are the antibiotics working to clear up the infection?

I don't have to face the challanges you do each day---so I can't tell you I know what your going through....but I can give you a BIG HUG.

I hope things get better for your soon.

Julie :0)

[Eillyre]

Sending a smile & hug your way, Melissa!

Sorry things are so rough for you on campus!

Angela (with an extra smiley for good luck )

[MightyMouse]

Yi yiiiii YI!

Ah, the bumbling cogs of beauracracy. Sorry you've gotten chewed up in the machine.

Nina

[AJVDK]

Melissa,

I hope things strat getting better for you soon!

Good luck at the CC on Friday!

Hopfully things will start looking better!

Have a great night!

[lalalisa]

Melissa,

Sounds like a really rough time! You sure have had your difficulties with this school (between prof's and the health department they have a lot of room for improvement!)

I need to go but wanted to say hi and that we're here for you.

Hang in here!

Lisa

[joyrose]

Dear Melissa,

You deserve a merit badge for Effort because you have put out an extraordinary amount of strength just to "keep on keeping on." That is so tough.

I may be able to find someone to help you. You can email me and I'll give you my phone number. I care. Deb

[Evie]

Hi Melissa,

Wow the logistics for getting around your university sound really tough. I thought by law all areas had to be accessible for disabled paitients? Or does the unsafe van count as access?

maybe you could explain your situation to the councellers and maybe one of them could meet you somewhere that you can access safely? given its the councelling unit you would like to think they would be compassionate.

Hang in there! i hope your ear feels better soon from the antibiotics... i hate taking too many antibiotics to .. but ear infections are SO painful and thankfully they react to medication well.

[taylortotmom]

Okay, Melissa, it is now obvious that your mission in life should be to write a book. Obviously, you keep getting these unbelievable scenarios for a reason. Loitering? Near death by handicapped van? Bless your heart- but your life sounds like mine! Oh yeah, don't forget getting a physical next to the Frito machine. And the broken elevator... It really is a shame and I am so sorry. Girl, you are going to be an amazing social worker because you know what it feels like to be treated like dirt. Compassion cannot be learned in a textbook. This mess your dealing with will end up helping you in the end believe or not (But it still isn't right).

Carmen

[MightyMouse]

I'm cracking up at the thought of a book...

can you add a small sentence or two for me--a real life scenario from last year. Teri and I are in the car on the way to the ER (again) and T says "Nina, I need to say something very important." I got kind of nervous cause the tone was so intense and serious. I said slowly..."ohh ...kay.." which was followed by Teri screaming "SUNDAY IS NOT EMERGENCY ROOM DAY!" and us laughing hysterically as we pull into hospital parking lot for the 4th weekend in a row.

Seriously though, having worked for Rutgers University for several years, I am intimitately acquainted with the size and scope of the red tape. Every department has their own political heiarchy and mazes, hoops to jump, fires to put out, and every other possible clich? that goes with such a huge beaurocratic system.

If it makes you feel any better, the elevator in the building that houses our Disabilities Services office was out of order for almost a year. Gotta love the irony.

Nina

[JaneEyre9]

Hey Melissa,

I'm really sorry to hear you're having to fight so many battles just to get through each day....just to do simple things... I sure haven't been in your shoes, but i know that feeling. I'm thinking about you, and I care. Evie brought up a good point about asking a counselor to meet you or maybe even talk to you on the phone. I hope your ears clear up soon...you've had to deal with WAY too many infections lately! You can always call me up if you need a listening ear.

Kristen

[Sunfish]

thanks ya'll i don't know what i would do without you...knowing that there's people that "get it."

i think i may have been confusing about my comings & goings at CC. i'd already been to see dr. shields & it was a good appt. he spent probably an hour and a half with me. yesterday i had testing & an appt for urology stuff that had actually been scheduled months back. it showed more specifically what my bladder issues are but then the urologist wanted me to take a med that - upon getting home - i discovered was contraindicated for those with OH. amongst other things. and i'd even asked about this specifically. geesh. so....here's where dr. shields gets even more bonus points. when i called his office today to try to find out what his take is on trying this med, he actually called me back...on a friday afternoon! i just about keeled over i was so shocked. and i'd even said that it wasn't urgent. hopefully my appt with a new primary will be just as good on monday. then i'll be super happy. i also got the call re: scheduling other things...the QSART next week, sleep study in about a month, & some other fun later. but it is SO awesome to realize that this is a doc that is actually accessible via phone.

aha. and then my other good news for the day. i met with a lady from the university re: the issues that i've been raising with them this week. since everything sort of "blew up" on wednesday i actually have received an onslaught of phone calls. it very well may be b/c they're worried about a lawsuit, but if that's what it takes for things to happen that should have been taking place already, then so be it. but the irony is that all the calls are uncoordinated, i.e. most don't know i'm getting the other calls, so it's just another demonstration of the messed up system (or lack there of) of the non-communicative beauracracy. one guy tried telling me that the assistive transportation wasn't the way i was saying it is, but i brought him around in the end. and the meeting i had this morning was good. she came to the one building where i could park & was pretty baffled but some of what i was telling her about things. and wanting to help. and this afternoon i rec'd a phone call to tell me i have parking at lots of the campus lots....everywhere we'd talked about for the most part...which will be SUCH a help.

so the multiple calls have been taking tons of time, but i guess the more people that are aware the better in terms of education/awareness/advocacy in general. and i'd rather be getting too many calls than none at all.

i stressed big time that i'm concerned about the issues not just for me but for others - current & future - b/c while i need things to be different in order to function myself on campus, others shouldn't have to reinvent the wheel.

my mom & i decided that i should get some sort of credit for this toward graduation. i'm definitely getting lots of practice in the social work advocacy sort of realm. and it's sure taking tons of my time & energy.

and my ears are feeling a bit better, so i didn't have to have another appt by the snack machines today...

and about the book....i laughed & cried when i read the suggestion, b/c it's already a plan that i've had for years. i think there may need to be a few volumes at this point though! it'll probably be awhile in coming, i.e. after school, so don't hold your breath, but it will happen. and i'm sure will include some of others "fun" from over the years. like no ERs allowed on sundays:-) and yep, i already have a title:-) an you will be able to say "i knew her when". hehe. enough of that.

so....bottom line....things are still rough, but the squeeky wheel does seem to be getting me somewhere. the process may be the end of me, but i'm hanging in there. getting closer to baseline health-wise (aka pre-ER/mestinon "overdose" status) and hoping to be able to get caught up on my schoolwork over the weekend. b/c somehow i'm going to make this work gosh dern it

thanks folks. you're all invited to my graduation party. and my book release party:-)

melissa

[dizzygirl]

Wahoo!! I'll bring the pretzels and multiple flavors of "gatorade!!

dizz

[DancingLight]

hey girl,

sorry to be so quiet on my end...i'm reading and following your 'preparation for writing a book' and will be working on healing so i can make it to the graduation and book release party...

i'm off to bed, but just wanted you to know how much i'm thinking about you.

as i've said before...this stuff is just too good to make up...ya know??? it's nuts...

it makes my heart break for you and it makes me soooo frustrated how far we have to go to make things accessible for people with disabilities...

oh, but don't get me started!

hope you get caught up on school work this weekend!

hugs, em

[Poohbear]

Hey Melissa!

I just wanted to respond briefly; I'm still at Vandy and internet access isn't the easiest and I don't feel so well but I at least wanted to say I hope you'll be feeling much better soon and I'm sorry you are dealing with all of this.

I can relate very much to your frustration of having to spend all of your precious energy dealing with these issues but hopefully it will make a difference for you.

Can't wait for the book party!!

Hope you're feeling better this weekend