Thursday, May 31, 2007

Things I really wish I would never have to hear any doctor, ever, say again:

"Wow, that's impressive."
"I've been a doctor for X-number of years, and that's definitely the worst I've ever seen."

Neither of these things are particularly helpful &/or reassuring.

But it this case, it's just my mutant tonsils acting out again: the left one managing to balloon up to three times its normal size and meet the right one over on its side, past my uvula (aka 'the hanging throat ball,' which is what my sister decided to call it. In public).

Which, as you can imagine, led to some breathing difficulties. And swallowing difficulties. And, you know, talking difficulties.

And after a quick call to the doctor, and a trip to the Acute Care, I got myself plugged into an IV, onto some steriods, fluids, & mega-antibiotics & now (finally) I'm home again, home again, jiggity jog.

And feeling much better. Breathing on my own & swallowing things like soup - with a mushy cracker, thank you very much - and ice cream. And my left tonsil has finally decided that it sort of likes its original position, and is heading home to claim it. They're pretty sure it was just the strep (which I get, like my sinus infections, with stunning regularity), but have no idea why my tonsil(s) decided to revolt so badly this time. Also, they yelled at me for not coming in on Monday, when it first migrated, and instead waiting till I knew my doc would be there on Tuesday.

Ok, it might have been a little tiny bit dumb, but I was still breathing and all! I just don't like to have to explain how ... well... everysinglething about my medical history. Especially when I couldn't really talk! Besides, Zack had me in there within the hour, and hooked up less than 20 minutes after he saw me.

So, it's all good.

And it better get better, because I plan on actually LEAVING the house on Saturday, for a drive up to Maine for my cousin's baby shower. They told me, contagious-ness wise, I'd be OK; but the steriods (as we've talked about before) really screw with the FM, and I am not enjoying that particular side effect. It's only an overnight trip (in a hotel!), but honestly - I need this.

I have not left my house (except for emergency evacuations to my Grandmother's house,) overnight in at least 3 years.

And the last time I took so much as a long weekend, it was for this same cousin's wedding, in Maine, 5 years ago.
5 years ago; two nights, three days. That is sad and pathetic.

I'd love a vacation, but unfortunately, all of my problems just come with me (and screw things up there too!) Plus, my family is coming, and it's just overnight, but I DON'T CARE.

Because this weekend, I am going to a baby shower. Because this baby has been quite a few years (and lots of issues) in the making. Because I love this cousin so much. And because y'all know there's nothing I like better than babies.

So I'm going... mutant tonsil or no.

(Stamps feet and walks (well, rolls) away.)

Monday, May 28, 2007

Why haven't you fixed the A/C?

Tracey's at it again, with a particularly un-graceful My Best Shot Monday. Head over to to check it out. As for this picture, Youngest/Only Niece is usually the happiest of babies, but after trying unsuccessfully to nap in the close to 100 degree heat of our A/C-less car last week, she was less than pleased with me. And taking her picture was NOT acceptable either. I know I said it last week, but this girl looks even more like her father and big brother when she's pissed (and what does that say, that I recognize Youngest Nephew & Only Brother's "I am MAD!!!" face better than any of their other expressions...?)

Don't forget to check out MBSM!

Thursday, May 24, 2007

“To try to be better is to be better.” Charlotte Cushman

Thanks so much for all of your comments on my last post...

Linda - The PUS does suck (but my head will explode if I try to talk reasonably about them right now).

Also sucking? Insomnia... I'm totally feeling you jannie! (Current time: 12:57 am.. ugh!)

Janice - I totally could have used some jokes... Zack is awesome, and manages to say most of the right things, but there were a couple of times when...(well, you'll see)
Hugs right back at you - I'm so sorry I missed your call!


This week's dr's appointment was a big disappointment to me: mostly a huge waste of time. (Although I am sporting a pretty spectacular bruise as a result of a new, substitute - read: not gentle - blood technician... Wanna see? ) Unlike most appointments with Zack, this one took about an hour. He poked my back (but very gently). We talked about my symptoms and any changes and all that crap.

And then he sat back and said:

"Well, we have some choices to make here. Again. And they are not easy choices. So here's what I need to know from you: Do you need a break?"

And in the minute or two before I answered him, I thought about it. I really, really thought about it. I thought about not having to go to the doctor every other week. I thought about all the times I have to go for these frightening or painful tests. I thought about all the different doctors I have explained myself to over the past year. The past three years. The past 12 and 1/2 years. And I thought about how great it would be to not have to explain it again.

I don't want to keep doing this, honestly. Most of the time I feel like I am fighting for nothing. I'm sick of hearing doctors say things like "Well we just don't know enough about this disease" and "the research is starting now... there are people out there who are working on this... they're just not there yet." I want them to be "there." I want to be through with all the hospital trips and the 27 vials of blood draws and the fricking questions with no answers. I WANT ANSWERS!!!!

But here's the thing:

Taking a break from all the tests and questions and doctors is one thing ---> but I just don't have the option of taking a break from my illness. And as hard as it is to do this every, single day, part of the reason I can keep going is because I know I am doing all that I can. Everything in my power is being done. Every ounce of spare energy I have is dedicated to feeling better. Not necessarily finding a cure (which I would DEFINITELY accept), or even figuring out with 100% clarity what the hell is wrong with me: I just want to be better.

So if that means I have to tell yet another intern why I won't stand up for their examination; Or if I have to lay in yet another tube, battling the urge to pray for them to just find. something. ANYTHING that they know what comes next with; Or if I have to keep setting aside that energy that I could be using to call my college roommate back or take my nephew to the movies for yet another specialist visit, then I am willing - for now - to keep doing all those things. And a million more things. Because there's got to be a better for me. There has to be.

So I told Zack that, while I certainly appreciated the option - and left it on the table for later, should I need it - that we needed to keep pushing. We need to keep going.

And we talked a bit about what comes next - Specialist X and Metabolic Clinic Y, and I thought about how nice it would be if I never had to meet another doctor in my whole entire life - but instead, I agreed to come back in two weeks, after these latest blood tests, so that we could take our next steps. Physically, the appointment was nothing more than a bit of extra stress, fatigue and pain: but psychically --> it was a toughie.

:big sigh: We keep plugging. Till we find better.

Here's the beautiful mark from the substitute nurse (Ms. "Oh my gosh, you have such bad veins! And the blood won't flow!")... Just FYI: You aren't supposed to wiggle the needle around and make my arm swell up: bring back my regular blood tech! This was it last night, less than 5 hours from when she took it. Today it's even prettier, (twice the size! better colors - more purple!) but my camera battery died (again - which is a whole 'nother rant....) so this is all I've got.

Tuesday, May 22, 2007

In which I find...

I find, this week, that I am more than a bit exhausted, and I don't want to deal with anything or anybody.

I find that I have been taking some things for granted.

I find that the PUS is doing their best to make our lives miserable, and ...
too often, I find that we are letting them.

I find that getting upset at night isn't really helpful with the whole CFIDS-insomnia thing.

I find that the more I want to say here, just lately, the less able I am to say it coherently.

I find out that hoping can be dangerous; again.

I find myself totally apathetic about tomorrow's doctor's appointment, because I am too tired to even think clearly, let alone hope to make sense while I'm there.

I find that midnight is a terrible time to be writing, when you are feeling this poorly.

Monday, May 21, 2007


Originally uploaded by bbackprple.
Tracey was talking about connections today, and this is the shot I thought of. A reflection of Baby Girl in her daddy's picture. I think it could use some photoshopping, eventually (it's a little grainy). But I was so proud to get this shot... it's not like she stays still for very long, you know. Don't forget to visit Tracey (who's post is amazing) and other My Best Shot Mondays!

Friday, May 18, 2007

Things I think people should stop saying (pt 1)

I'm going to go ahead and declare a moratorium on the phrase "... the last, great hurdle we have to overcome." Because, too often, people are only seeing the hurdle they are involved in, and don't look over to the other lanes, where there's hurdles aplenty left. Racism, sexism, ableism, homophobia, antisemitism - unfortunately, none of these is the last problem our society has left to conquer. Sure, there's a lot of crossover, and a win in one column can often add points to all the others, but I have to say that I just don't see us solving all of our society's ills anytime soon.
So let's accept the fact that we've all got a lot of work to do, and stop pretending that our one particular fight is the only fight left to fight.

Thursday, May 17, 2007

5 questions

Maya's Granny asked me my interview questions for this meme, but I've been a bit slow in answering. Here's what I came up with --->

1. If you could choose a super power for a day, what would it be and how would you use it? Super power for a day, huh? Well, did y'all catch this week's Heroes, where Linderman went around healing people? I might like that. Get together with whoever could fly and scoot around the world healing all the ills that need fixing. Yeah, that'd be cool.

2. What is the most important thing you look for in a friend? Humor. Compassion and understanding. Ability to listen, not just talk. Honesty. Kindness.

3. When you think about yourself, what one thing do you hope other people notice about you? Wow... this was a bit harder for me to figure out than at first glance (I guess I spend too much time thinking about the things I hope people don't notice). But I'd hope they would come away from a discussion or first meeting with me thinking that I'd listened to them, that I'd cared enough to pay attention.

4. If you replaced your entire wardrobe tomorrow, what are the colors that you would build the new one on? I am soo not good at fashion type stuff, so... whatever colors my younger sisters would suggest. (Because, honestly, they are always right about this kind of thing.)

5. What is your favorite thing that you feel silly about liking? I sometimes feel silliest for liking - & continuing to watch/listen to - children's movies & music. I'm not talking the "Wheels on the bus," but if you were to flip through my Media Player, you'd find quite a share of Disney music. Of which I would know all the words to. And I have, at certain points, used my younger sisters, and eventually my nephews as my cover... "Oh, she wanted to watch this, and I was already in here..." type thing. My love for the Muppets is unabashed, but if you also sometimes sneak in the Gummi Bears theme song, it can make you feel a bit silly.

I absolutely would love to ask questions, if anybody would like to be interviewed. Thanks again to Maya's Granny for her excellent questions!

Here are the rules, if you would like to be interviewed:

1. Leave me a comment saying, “Interview me.”
2. I will respond by emailing you five questions. I get to pick the questions.
3. You will update your blog with the answers to the questions.
4. You will include this explanation and an offer to interview someone else in the same post.
5. When others comment asking to be interviewed, you will ask them five questions

Monday, May 14, 2007

Baby Girl Laughin'

Baby Girl Laughin'
Originally uploaded by bbackprple.
Here's My Best Shot Monday shots ---> Tracey asked for some diagonals, and boy, was it hard to narrow down my choices. (I don't exactly always shoot straight, as you might guess.) So here's two shots... both, I think, are improved by the angle. You can tell that people are having some fun here. Don't forget to stop by and check out all the other crooked shots....

SisterJ & Fiancee Laughin'
Originally uploaded by bbackprple.

Saturday, May 12, 2007

May 12th is CFIDS/ME Awareness Day & FM Awareness Day: if you've spent any amount of time here, I'd say you're at least semi-aware of what all those things are. If not, you can get some facts here - CFIDS Fact Sheet; FM Facts. Also, I may not have explained that CFIDS is called ME in many non-US parts of the world. It stands for Myalgic Encephalomyelitis, and you can read more about that here. (Also, there's some controversy about whether CFIDS and ME are the same thing, and about changing the name of CFIDS to something else, but I don't want to talk about that right now. I'm just putting it out there, in case you're interested.)

Last year's Awareness Day post had a lot of pictures - t-shirts (available at that said something significant about CFIDS or FM. This year's post has been harder to write: Coming so close on the heels of Blogging Against Disabilism Day, I don't want to repeat too much of what I've just said, but it's been difficult to figure out what exactly I [i]do[/i] want to say.

So here's what I think I'm going to do. I'm going to put a couple of quotes up, mine and others, and other than that, I'm going to devote this post to saying thanks.

Thanks for all the understanding, compassion, and welcoming I have felt here in this online world.
Thanks for taking the time to listen, to ask questions, to try to understand.
Thanks for sticking around through all the "flaring, flaring, God this is so boring, but I'm still flaring" posts.
Thanks for thinking twice about whatever preconceptions you may have had about CFIDS & Fibromyalgia, or people with disabilities.

Thanks for being so supportive & caring & thoughtful: Isolation is a very serious issue, particularly with diseases like mine, where I can go (and have gone) months without seeing anyone except my family and my doctor.

This blog, when I started it, was just a shot in the dark... the hope that there would be people out there who would hear me. I cannot fully express how grateful I am that I have found just that.

So... with all my heart... Thanks.

"But the illness that took over my life... actually erased some patients' fingerprints.... It sanded down the whorls of identity. It made us perfect thieves and perfect victims. Perfect to ignore, easy to blame. Digit by digit, person by person, the erasure deindividuated the very hands that symbolized our humanity, our vote in freedom. But the fingerprints hold a paradox. The smooth fingertips - they seem to tell so much. They seem to indicate, that nothing is there. But what is bes is what they cannot tell. They remind of of what has been taken away. ... CFIDS, an illness that seems - like a criminal suspect - to erase its own evidence." Peggy Munson, Person with CFIDS (PWC)

"This illness is not the result of some personal defect. I am certainly not enjoying myself here. I might be stuck in my house, but I will not be silent and I will not be ashamed and I will not be ignored. I will talk about why I am stuck here and keep talking until something gets me out. Jennifer Robinson, PWC

"Chronic illness means never being able to say, "This is for sure ..."-- Ricky Buchanan, PWC

"I am just drained. I am tired of having to fight every day, and tired of not knowing what to fight. Tired of trying to accomplish something, and having yet another day pass to find I’ve accomplished nothing more than making it through the day. Tired of having to justify my self, my thoughts, my actions, my non-actions, my illness, my good days, my bad days, my life. To anyone – including myself. I am just so weary of even having to think about myself and my health, and all of the things that are wrong with my body, my spirit, my life, and having no idea how to fix any of it. I am just so sick of having every little minute be full of pain and grief and anger and hurt and fear and exhaustion, that I don’t know how I’ll make it to the next minute. I am tired of wanting to cry. I am tired of crying. I am tired of being angry at myself for needing to cry, and just of everything. I just want a rest. A break. And I don’t know how to find it." NTE, PWC

" that word effortless ... I want to be effortless someday, do something, anything, effortlessly..." -- Jodi Bassett, PWC

“I remember the night I lay on my bed and weakly turned tear-filled eyes to my husband who lay beside me. “I’m going to die,” I said, “and they aren’t going to know what is wrong with me.” Eva Marie Everson, PWC

"A suspicious public, continually trying to prove myself, and inner battles with self-doubt: an exhausting mix, even for a healthy body! But that is not all... add the fact that the government - our government, the one we pay taxes to, the one that is to serve and protect us - is at best guilty of negliegence and at worst guilty of purposeful betrayal. They denied my illness existed for years and then, with chilling premeditation,
illegally misspent funds for medical research that could have helped to give me back my life - years ago. Years ago! ... Like the major struggle of my life was a nonissue." June Stein, PWC

"The thing I hate most about being sick is that it's like a roller coaster in the dark. Some days I will feel real good and think that everything isn't so bad, but then right after that something really bad will happen and I feel like maybe I'll never get well."-- Ross Moran (aged 14), PWC

"No Alcatraz is as inescapable as one’s own debilitated body.” Peggy Munson, PWC

“While I was lying there, I began to believe that we had struck the deer back in 1987, that he had come through the windshield and killed me, and that this was Hell.” Laura Hillenbrand, PWC

"Please be prepared to love and accept your child in whatever diminished state he is in, and try to give him reasons to love his life as it is now. This is not a disease you can push through, or conquer by sheer willpower, those things in fact make you worse. So please, don't push him to act well. Just love him and care for him, and be glad that he doesn't have something that will take him from you. Everyone should read this again, and think about each phrase. Then substitute the word another word for the word 'child'. Try 'wife', 'husband', 'SO', 'spouse', 'friend', 'lover', or whatever fits. How about adding 'yourself'. That is often the hardest."-- alt.meds.cfs

"I hate how people who knew us when we were well can't stand to be around us because it makes *them* feel vulnerable and mortal."-- Krasota, PWC

"There will be times when you want to scream and rant and tear your hair out at the unfairness of this damn disease, and there'll be moments where you'll see something beautiful in life and simply be glad to be alive." -- Margie Heinrich, PWC

Monday, May 07, 2007

Birthday Boy

Birthday Boy
Originally uploaded by bbackprple.
Here's My Best Shot Monday... I'm kind of wiped, still, so I don't have much to say, but here's my cutie, zooming his new toy.

Don't forget to head over to Picture This, for everybody else's shots.

Saturday, May 05, 2007

Let me just say

How wonderful so many of the BADD posts were. And how much I appreciate all the comments you've left here, on my BADD post. I hope to spend some of tomorrow writing my replies, and, hopefully, winding my way through the blogs I missed (Every time I go back, there's more new ones!) It's just been a long week for me, and, while I have a lot to say, I have little energy to say it with. But I'm aiming for tomorrow, when the house should be quiet and my brain can go as slowly as it wishes.

Rest Well -

Tuesday, May 01, 2007

Blogging Against Disabilism Day

“You know, it’s so funny. What keeps any of those people in that dining room from being like me is just a virus, a thing in my body over which I had no control. Why did I get it and not them? Fate. Circumstance. Luck. But I have a place on the earth, just as they do. I have rights.” Elizabeth Berg: We Are All Welcome Here

Today is Blogging Against Disabilism Day, and it’s a topic near and dear to my heart. When you finish here, please go over to Diary of a Goldfish and check out some of the other, bound-to-be wonderful posts.

Disabilism (or ableism, depending on your preference) refers to discrimination on the basis of ability/disability. Like any form of discrimination, there are a million different ways that this prejudice can be expressed. I’m going to try to focus on just a few of them.

First, there are the more overt examples of disabilism that I have been subjected to: The kind of things that most people would recognize as a form of exclusion based on my illnesses &/or inabilities.

What sorts of things have I been denied, recently, on the basis of my disability alone?

I have been denied proper medical care and my dignity: Let me just say that having a ramp does not make your office accessible. Having a ramp is nice, but if the doorway it leads up to is too narrow for a wheelchair to fit through, it means squat. If, once I manage to crawl through your doorway while someone else pushes my folded-up chair, I still can't get into an actual exam room? Then your office is not accessible. If I have to sit next to the trash while you "clear out a little space" in the HALLWAY for us to conduct our exam, your office is not accessible. If you have to skip over the "not so important" parts of the exam because someone is trying to get by and you want to "move things along," then your office is not accessible.

I’ve been denied my home & my health (by The PUS and by the city), a total of 4 times in the past 9 months.

I have been denied the ability to make my own choices & to be regarded as whole/grown-up person – “I am in the mall. I am waiting to the side of an aisle for my sister to catch up with me. A woman that I don’t know is suddenly at my side – “Can I help you get in there, sweetie?” Grit teeth re: sweetie. “No, thanks, I’m just waiting.” “Oh, it’s no bother. I’ll just move this, right here. I don’t know why they can’t make these places so that everybody can fit.” Yes, I agree. But… “No, thank you. I’m really just waiting for…” “Now see – that was quick, wasn’t it? Now I’ll just… there!” Did you really just lift the back of my chair up like a shopping carriage? And almost dump me on the floor? I know you didn’t: “Ok, you need to stop that, please. Because…” “Oh, I just know it: the angles in these places! But they don’t think about that. There, you’re all set!” No, I was all set before you came along and decided for me that I should be up over this bump, sandwiched in between some clothes. But thanks, really, you were such a big help. Now I know you aren’t standing there waiting for me to say thank you, are you? Sigh, I am such a wimp: “Well, I can’t tell you how much I appreciated that –“because I didn’t at all – “but really, I..” “Not a problem, sweetie.” And off she bustles, honestly thinking she’s done her good deed for the day. While I am now stuck between the clothes, over the bump.”

And, sure, some of these examples might have gone differently if I could have been more assertive (trust me, these are lessons I have definitely taken to heart), but the fact is that I was just going about my day, and my experience was directly impacted because of my disability - and other people's disabilist attitudes.

But, more often than not, for someone with illnesses like mine – chronic, incapacitating, but in many ways invisible – many of these acts of degradation & discrimination are more subtle.

“I've been lonely, I've been cheated, and I've been misunderstood, I've been washed up, I've been put down, and I've been told I'm no good” A Change In My Life

We talked before about my soon-to-be Sister-in-law and her "Suck It Up" comment: but this is just one example of the more subtle, more emotional, but no less damaging types of disabilism a person with a disability can be subjected to. I have had people – close to me and close enough – tell me that I am lazy, weak, faking or depressed. I have been told more than once to ‘just start moving’ or to ‘keep moving till I feel better.’
On my worst days, I feel the guilt of being unable to do so, the fear that I am not really trying, the shame that I just keep failing.

You know this is what our culture tells us, so much: It’s really a question of mind over matter. You can overcome any sort of weakness through force of will. If you can find whatever the emotion block is, that’s all it takes. It can be very hard to overcome that whole notion.” Paula Kamen, Head Case, on

“I’ve never gotten better, no matter how hard I’ve tried. I’ve been ill 7 years. I used to have only 4 symptoms: Now I’m up to 25. I’ve run out of fuel. A million times I’ve tried to resurrect, to no avail.” Mayra Lazara – Prisoner of CFIDS; Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome

Having chronic, invisible & controversial diagnoses also makes you aware that there’s a hierarchy of ‘acceptable’ illnesses. Having to divulge the source of my disability is sometimes frightening: I’m afraid to see the doubt in their eyes if I mention CFIDS, afraid of what they think of me now that I’ve told them, afraid of having to – yet again – defend myself & my choices about an illness that I have no control over. I’ve often thought it would be easier to say “Cancer,” because you know what response you’re going to get then: No one’s going to look at you like you’re crazy; no one’s going to say you should exercise your way out of it.

If it’s someone I’m just meeting, I probably don’t explain, specifically. I usually don’t, at first meetings, launch into my list of diagnoses - People tend to find it off-putting, and (much shier in person) it’s just not in my nature. If someone I don’t really know asks me what’s wrong with me – and they often do - I tend to stick to the vague – “immune system issues, blood-pressure issues, a form of arthritis.” These are all true, but they don’t feel true. It makes me feel guilty that I sometimes just don’t have the strength to say “It’s CFIDS/FM/POTS” and deal with whatever reaction comes up. It feels as if I’m denying a vital part of who I am and betraying all the other people who are suffering from these horrible diseases and can’t speak up.

Some of the more negative responses I’ve dealt with have been from people who didn’t really know me. A student in an abnormal psych class in college, who brought up CFIDS when we were discussing psychosomatic illnesses. A cousin who calls me Stumbles and says things like “If you stayed with me, I’d have you outta that chair in a couple of days.” Although he means these things in jest, I don’t always take it that way. (And have responded to the question “So when are you going to start walking again, and stop laying around all day?” with “Well, about the same time you re-grow your hair and start to grow yourself another testicle, as the amount of control you have over that is equal to the amount of control I have over my condition.”)

My siblings have probably been the ones most affected by, and most conflicted by, my illnesses. They're also the most likely to hurt me with their discrimination. For a long time, one of my younger sisters – only 8 at the time I fell ill, - felt I was faking the whole thing. To her, illness was something you caught and got over: Why didn’t I get over it already? And for quite a while after that, she continued to think that I was using it to my advantage – using it to manipulate things into going my way: we shared a room, and she couldn’t listen to her radio at night or when I was resting, she never had the room to herself, as I was mostly confined to bed, everything seemed to work to my advantage. (The fact that I was too sick to enjoy whatever advantage I may have had never seemed to occur to her). She was very vocal in her dislike of me and my illness, and there continues to be times when she is completely uninterested/unsympathetic about my situation.

Being ‘the sick one’ sets me apart in my family & with my friends, in a lot of ways, and there are many, everyday discriminations I face: Parties (or lunches or movies, shopping trips, conversations) that you don’t get invited to any more (never mind the fact that you most likely couldn’t go anyways). Ones you are invited to that include ‘just a few steps’ or women bathed in perfume. Deciding to get a cat or a dog, even knowing it means I can never visit your house. All these items illustrate a pattern of exclusion, even by those closest to me. Often, the impulses behind the exclusions are good – not wanting me to be disappointed that I’m missing out on something, for example – but they still serve to set me apart from the ‘normal’ people, and further my sense of isolation. *Just a note here – my family and closest friends also go out of their way to include me in things & make special arrangements for me when necessary. For today, though I’m only discussing the times (thankfully less and less frequent) that doesn’t happen.*

“Damn it all, I wish he (her husband) would read and understand. I am so tired of pleading for consideration. It is humiliating to have to beg all the time. To exist at the convenience of others. And I am expected to just put up with this quietly.” Phyllis Griffiths – Valley of Shadows: Journal Entries; Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome

I thought about continuing on, talking some more about how so much of the experience of illness is shaped by people’s preconceptions about what illness really or means, and how so few people have any understanding of my illnesses at all, but I want to make sure you all go read some other posts. I’ll just finish by saying this:

Living with a chronic illness (or any disability) is hard. It’s an everyday, everyway kind of struggle. And prejudice and discrimination and mistreatment only serve to make a difficult situation worse. There’s no need for it. There’s no excuse for it. If you don’t know enough about something that someone is dealing with, ask questions. Read about it and learn. Don’t assume that they can or can’t do something. Don’t assume that they’re unhappy just because their sick. Don’t assume that one sick person is like another. Don’t assume that you’re helping them when you’re really not. Just don’t assume. The only thing you can assume is that a person with a disability still wants to be treated like a person.
And it would really help us out if you could do that.