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> The Disorder Sisters (aka. the chronic illness thread)
_octinoxate
post Apr 18 2007, 06:53 PM
Post #21


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Annelise, your bf sounds like a real keeper! That's great. Mine tries hard to be understanding and accepting, but it's like there's this underlying idea that I'm some sort of invalid who can never be a true equal in his activity-filled life, but rather someone he'd have to care for. It drives me mad! It's like, I don't need someone to take care of me-- just do a few simple tasks now and then (eg, change a lightbulb if I can't climb up on a chair/ladder, stuff like that). I sometimes feel like I'm "worse than I seem" (like you said) just because I cope well and don't complain. But he takes that as almost a form of deception sometimes--! blink.gif

Do you use a wheelchair all the time? I scrolled back a bit in the thread and saw you have MVP--? What is that, if I may ask?

For me, I only have to use a wheelchair (or cane chair, or whatever) in more exceptional circumstances, so it's interesting for me to be someone who is probably technically "disabled" (at least now) but who can "pass" as totally fine-- if I just put up with physical pain. Kinda like I don't feel totally at home in either group, disabled or not. (Or like I feel at home in both groups, to put a positive spin on it!)

Thanks for sharing, annelise!
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annelise
post Apr 18 2007, 10:13 AM
Post #22


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From: chicagoish


my parents really get to me--when i had knee problems i was an embarrassment and making a big deal out of myself, and with my current health probs they seem to think the same--they think i'm always overexaggerating it, when really it's the opposite and i'm much worse than i let on! there's this big feeling that my illness is an embarrassment to them.

it drives me nuts and bothers me a lot, but i try not to spend very much time with them. i know it's because (at least partially) they love me and don't want me to be sick, young as i am...but arrrgh. sometimes i wonder if they'd be more understanding if i had a disorder that was better understood, but i'll never know (hopefully--i don't need any more health probs!).

i've been in lots of therapy. i'm massively insecure about it, and always half-expect others to react to me judgementally. i hate it. i feel like i'm the great shame of the family.

the first time i had my bf push me in a wheelchair, i was terrified that he'd see more clearly how sick i was and be repulsed, but he was really sweet, and leaned over to kiss me on the forehead periodically.

and, yeah, i have massive self-image issues about all of it. so it took me a long time to accept that i needed aides. it's mostly been with the help/insistance of friends!
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_octinoxate
post Apr 16 2007, 11:32 PM
Post #23


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Annelise, thanks for the reply. I didn't even think of the camping chair idea! that's clever. if this cane thing sucks, I think i'll look into that. Regarding the idea that the important people won't mind such things: you know, I know that everyone important to me won't think twice about it-- except for one person: my boyfriend. He's got issues with my health/mobility stuff. I know that he will somehow see me as lesser when he sees me using aides. I guess we'll have to have a talk about that--? We've just talked about it several times already so I don't know what else to say or do about it. Maybe he just needs to get desensitized to it--? By spending time with me when I'm using my wheelchair or something--? Sheesh. I wish he'd just get over it. I know it's not a big deal, all my friends know it's not a big deal... but I'm afraid that if I'm with him long enough when he has this attitude/issue, it's going to become a source of insecurity/inferiority for me. And I would hate for that to happen. Anyone else had to deal with this stuff? (Self-image issues, or the way other people see you and value you?)
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annelise
post Apr 16 2007, 05:55 PM
Post #24


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From: chicagoish


i used to carry a chair around...i got a lightweight camping chair that was easy to carry around. it didn't have a back to it, which was sometimes too bad, but for me it was ok because there's often a wall around or something. or i'd have my head between my legs anyway to try to help my low blood pressure.

ppl would look at me funny when i'd whip out my chair and sit down in the middle of a grocery checkout line or whatever--i came up with the oversimplistic explanation that i'm prone to passing out.

i always hated the design of canes and the like...so many of them do feel frumpy and awkward and embarrassing. sad.gif

once i admitted to needing certain aids, though, my life became much easier. the people who matter don't think anything of it.
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_octinoxate
post Apr 16 2007, 01:22 AM
Post #25


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Sorry jay, no experience with that. Good luck.

I just popped in here to say that I finally caved and bought one of those cane/chair things-- you know, it's a cane that folds out with a little seat on it. It'll kinda make me feel like an old person but it's worth it for the freedom it'll give me: I won't have to shy away from social events anymore for fear of getting stuck with no place to sit down and take the load off my knees. I just wish they made some that weren't so clunky and frumpy looking.
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juls
post Apr 15 2007, 07:31 PM
Post #26


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From: Somewhere, Canada


My little sister had a kidney transplant a few years ago; she was about 17 years old. Fanconi Syndrome. It's now been 7 years and she's never had any rejection problems!

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jayboogie
post Apr 13 2007, 03:05 PM
Post #27


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Anyone here with Polycystic Kidney Disease? Andony here that has or is in the process of prepairing for a transplant?


--------------------
There is always some madness in love. But there is also always some reason in madness.
~Friedrich Nietzsche~
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_octinoxate
post Mar 20 2007, 12:33 AM
Post #28


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In a way, though, being around all the seniors makes me feel *healthier* than I am/than I usually do. In spite of my limitations, I've got good balance, coordination, muscle tone, great upper body strength, speed, stamina, etc. Compared to all the ladies at the pool I'm like an olympic star in the water smile.gif It's not that I rejoice in their weakness/lack of ability at all, it's just that it makes me realize all the stuff that, in my youth, I've still got going for me, and makes me grateful for that!
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jkat
post Mar 19 2007, 10:55 PM
Post #29


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no kidding, octinoxate! i go to my endocrinologist's office, and everyone's a senior. makes me feel sicker than i actually am. that's part of the reason i volunteer with jdrf....more young people. it's nice.


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Gangster of love.
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mellie0304
post Mar 19 2007, 12:15 PM
Post #30


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Hi does anyone here have a prolactinoma like I do? I am going in for a D&C to control some of my symptoms I have from this and I wanted to know if anyone else has what I do.
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_octinoxate
post Mar 18 2007, 11:58 PM
Post #31


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Sure thing, jkat! Glad it was helpful.

I'm glad there are communities where us young folks with these issues can feel at home... (unlike at the physical therapy pool I go to twice a week, where nobody else is younger than 70! Oh- but! I'm seeing a new therapist this week who is used to rehabilitating athletes. I'm excited for her new approach-- and for actually going to someone covered by insurance!!)
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jkat
post Mar 18 2007, 11:46 PM
Post #32


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hey octinoxate, thanks for posting that link to chronicbabe! i'd never heard of it before and it's pointed me to some good diabetes blogs.


--------------------
Gangster of love.
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oceangirl
post Mar 15 2007, 05:15 PM
Post #33


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oops I was just re-reading this thread. I should point out that I am the old member named "suffering". I lost my password when the board switched over. Just wanted to point that out. Puss in boots, what is TNF??

Also forgot to say that yes I can relate to not being able to relate on other boards. I feel like a lot of people are ahead of me in terms of what they can do. A lot of them have finished school, are working,etc. I haven't talked to a whole lot of people my age with Lyme disease who are totally debilitated the way I am.
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oceangirl
post Mar 15 2007, 05:03 PM
Post #34


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Hi puss_in_boots. Sorry it took my so long to get back to you I forgot to check this thread ooops.

I think the resource thread is a good idea. I haven't had to use any of these resources because my parents are paying for my treatment/I'm living at home with them.

I am in Canada. The medical system is sort of different here I guess. Sort of different but mostly the same. The doctors here mostly don't know anything about Lyme disease. We have two (yes 2!) Lyme literate physicians in the whole country. It's crazy.

I was studying English lit. I can't believe I started my degree in 1999. Woah, what a long time ago. It should not take this long to get a three year degree but when you are sick it just screws it all up.

Annelise - yes people can say really stupid things. I have heard some of the stupidest comments over the past few years. When you're sick it seems no one really knows what to say and some of them can say really insensitive things.

The other thing I've noticed is that people don't think young people can be sick. Automatically because you are you young you're supposed to be healthy. I wish.
It sounds like your new doctor is trying to get you better that's good. Unfortunately in my case I have absolutely no life but I know what you mean that your life does not lose all meaning or value just because you're sick.

Hope that all made sense!
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_octinoxate
post Mar 15 2007, 12:37 AM
Post #35


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Posts: 658


hi all. i might be in here more often to join in the conversation (as i have some chronic stuff as well- actually just one main thing) but just in skimming the thread so far it occurred to me to post this:
www.chronicbabe.com
I bet it's old news to most/all of you (I originally heard about it on bust), but I thought I'd post it just in case. It's for young women who happen to have chronic illness-- but who DON'T buy into the idea that their lives have less meaning or any of that garbage.
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annelise
post Feb 27 2007, 01:22 PM
Post #36


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From: chicagoish


I don't know what your experience has been, but I've found that navigating the public assistance in our country is one of the most depressing, fruitless, and unrewarding challenges of my experience with chronic illness.

this is SO TRUE. it all drives me mad.

that's a good idea about having a resource forum (or maybe thread), but i'm not sure how many people it might apply to. maybe we could talk about things of that nature on this thread...anyone who wants to know more about american public assistance is welcome to PM me as well. (i've been sick for years, am on SSDI, etc etc).

people always go on about how OMG YOU'RE SO YOUNG WHAT A WASTE. there are young people who get chronic or serious illnesses! we're just not so visible, and there's less of us. my new doctor actually commented on how we needed to figure out how to treat me better so i could get my life back.

i have a life, thank you very much. i'd like to be as healthy as possible, but i resent the implication that because i'm sick, my life has less value or meaning.
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puss in boots
post Feb 27 2007, 12:45 PM
Post #37


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Hi Oceangirl,

Wow, you're the first person that I've met who's in a situation like mine. Mostly, when I've been on Lymenet or to support meetings the people who are most active are in very different stages of their lives as compared to mine, and sometimes I can find it difficult to relate.

I'm an eighth or ninth year "junior", at DePaul University and omg, I'm ready to get this degree finished and move on. It's great that you only have 2 credits, so you're about there. What are you studying?

I'm in RI (the ocean state) right now, with my parents, and hoping to move to a warmer climate as soon as I'm able. I've been lightly researching a variety of housing options, but so far nothing is too promising. I'm on SS, and affordable and safe housing is difficult to come by.

I don't know what your experience has been, but I've found that navigating the public assistance in our country is one of the most depressing, fruitless, and unrewarding challenges of my experience with chronic illness. I actually posted to Bust, the night that I posted this email, to see if we anyone wanted to collaborate to make a resource forum. The forum could share information about: how to save money creatively, helpful non-profits that support women- people with disabilities or people with low income etc., tips on how to deal with the government "assistance" without pulling out all of your hair, etc.

I've found that since becoming ill, I've spent a lot of time researching illnesses and related resources and I still don't feel like I know very much. If a group of people pooled their learnings, it could improve this experience for all of us.

Cheers!

Adrian

QUOTE(oceangirl @ Feb 27 2007, 08:16 AM) *

Hi Pussinboots,

I just turned 27 too so we have a few things in common. I haven't yet finished my university degree. I have 2 credits left. It's been on hold for 3 years as I've been living at home with my parents unable to work or do anything. I just started on treatment a few months ago.

What has your experience with Lyme disease been like?

~oceangirl

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oceangirl
post Feb 27 2007, 06:59 AM
Post #38


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Hi Pussinboots,

I just turned 27 too so we have a few things in common. I haven't yet finished my university degree. I have 2 credits left. It's been on hold for 3 years as I've been living at home with my parents unable to work or do anything. I just started on treatment a few months ago.

What has your experience with Lyme disease been like?

~oceangirl
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puss in boots
post Feb 10 2007, 09:48 PM
Post #39


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Hi Oceangirl,

Tonight is my first night in the Bust lounge, and I saw your Lyme question. I have late stage chronic Lyme, so feel free to write.

Hi Oceangirl,

Tonight is my first night in the Bust lounge, and I saw your Lyme question. I have late stage chronic Lyme, so feel free to write.

QUOTE(annelise @ Sep 29 2006, 02:30 PM) *

does anyone have mitral valve prolapse syndrome? i have chronic fatigue syndrome and my doc suggested that i may have MVP syn. as well. i've done a bit of reading online and don't quite know what to think...


Hi I know your post is quite old, but I have MVP, if you need anything.

QUOTE(spazmatazz @ Aug 30 2006, 07:35 PM) *

Jesabelle: I'm pretty new to the lounge, but have been reading through old posts and saw yours about a possible lupus diagnosis. I was diagnosed with Systemic Lupus 5 years ago, and was amazed at how relieved I was to finally get a diagnosis; some sort of confirmation that I wasn't just trying to get attention, that I really was sick. Sometimes, if people can't see your sickness it isn't real to them, ya know?

Anyway, just wanted to empathize a bit. You're not crazy...you're hurting, and you don't have to.



Hi there,

I am new to the Bust lounge and read your post about having and managing Systemic Lupus. Congratulations on the management! I have late stage Lyme with secondary and tertiary complications, and I joined the Bust website, in part, to possibly connect with other cool, young, women (or men), who have chronic illnesses, and are finding satisfaction in there lives. I wouldn't say that "I can't get no...satisfaction" with my life, but as greedy as it sounds, I want more. One of the biggest challenges for me right now, is finding a way to support myself on social security. (as I'm sure you know, being poor is more difficult,when your med.s cost as much as your rent:) So, now that I've put it all out there on an old thread. I was wondered if you'd mind sharing any tips on making life the best possible. Thanks

QUOTE(suffering @ Aug 4 2006, 03:30 PM) *

I am in Canada too but am 26 and have been too to return to university so no insurance for me either which sucks but then again no Lyme treatments (with the exception of antibiotics) are covered by OHIP so I guess I'm not really missing anything.


Hi,

I was just reading your post. I'm in a similar situation, but I live in the states, and can barely figure the social services here. I'm 27 and have had Lyme for most of my life, but it's been the worst for the past 8 years. I'm trying to finish my studies at DePaul University online.
Since this is an older post,
How are things going for you now?

QUOTE(erinjane @ Jul 31 2006, 10:59 AM) *

I was looking at treatment options online last night and surgery was mentioned but always as a last resort because apparently it often doesn't work. My dad works for the government and I think I stop being covered by him in two months when i turn 21 so I'm scared a treatment is gonna be really expensive. 5 days after my initial appointment is when I get kicked off my dad's insurance. In the last month it's gotten a lot more painful so I know I need to do something about it. Gah, I wish my appointment was sooner.

erjane,

I've been in a similar ins. situation. I became chronically ill at 19 at the end of my second year in college. I'm in the US and my dad works for the state, so for a while I was covered through his plan, then that was extended b/c I was in school, and now, I'm 27 in school part time and have gov. ins. (which sucks) and we found out that legally because I was considered disabled by the court, I was entitled to supplemental ins. through my dad's new work plan (though unfortunately this coverage is about as poor as the gov.)

I wish I new more about how things work where you are, but I know how frightening and frustrating this situation can be. So jus' keep rockin' it-- keep records on your computer and in paper, keep track of all your dealings with doctors and Rx reciepts-- keep files on everything! That's the best advice I think I can give.

QUOTE(suffering @ Jul 31 2006, 10:32 AM) *

coccinelle- you're right about tmj treatments usually excluded from insurance. the treatments are all usually really expensive.

i'm not sure about rheumatoid arthritis and the jaw but i do know that now i have mild osteoarthritis in both jaw joints just from the wear and tear of grinding. i have been grinding since around age 12 and i'm 26 now. it has been especially bad within the last 3 years or so. i think the osteoarthritis is pretty new.

i haven't heard much about surgery for tmj. personally i would stay away from it unless it was my very last option and i was totally debilitated by the tmj. i don't think they often do surgery because it can cause it to be evern worse afterwards (in some cases).



Have you tried any TNF (Tumor Necrosis Factor Inhibitors)? Embrel, Humira, or Remicade?
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oceangirl
post Dec 24 2006, 06:54 PM
Post #40


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mandolyn,

Thanks for answering. What's an LJ group? Livejournal you mean?

~oceangirl
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