a personal note on chronic illness -- you are alone

[nashville_brook]

i have no idea what is wrong with me. it might be lupus. i have most of the indicators and it runs in my family. but i can't get a dianogsis. i have friends who are nurses who have clued me to the fact that i have to find a teaching hospital and really work on this as a puzzle -- which is to say, my "normal" GP, rheumotologist, OB_gyn, pain doc, othro surg, neuro surg DON'T GIVE A SHIT if the "problem" doesn't neatly fit into their field. the have tunnel vision and they don't talk to each other. i've been told to pick up my records at my GPs office -- that she doesn't want to see me anymore b/c "she doesn't 'do' pain."

to my soon-to-be ex-husband, and all my friends -- there's nothing wrong with me. that's b/c i don't have a diagnosis, despite all the blood sweat and tears trying to get one. i'm a freeloader for not working -- even tho i MIGHT have 2-3 hours a day that are "okay" -- where the pain is under control and the fatigue is beaten back with caffeine and sleep.

the illness put the final nails in the coffin of a marriage that wasn't loving or supportive. so maybe that's a good thing. on top of being mysteriously ill, i'm leaving behind 20+ years of LIFE. my house, my garden, my friends (who hate me now), my town -- essentially everything i had worked for in my 20s and 30s. i've lost everything.

as the saga continues, i'm quickly becoming homeless. right now the alimony isn't enough to cover deposits for an apartment. maybe after a couple of months i'll have that. i have 2 small dogs which have eliminated what little family i have from offering a place to stay. i have 2 faraway friends who have offered to take me and the dogs -- one's in florida, one's in charlotte (living with her 80-year old mother who is a stroke survivor) in a tiny apartment. the only good option is the friend in florida and i've already had to stay with her for a month. i can't stand this feeling of freeloading.

it gets worse as anyone with chronic illness can imagine. if i go to FL i can save some alimony -- but i'm too sick to get a short-term job. can't waitress or do anything on my feet. i'm a marketing communication professional and can make decent money in the field -- but -- not in the area where the lodging is offered (small beach community).

i need to get myself to a large city with a teaching hospital and research in immunology. but that's down the road a way.

none of this is completely undoable -- it's just almost undoable. if i put effort in one area -- say, going to FL for a cheap place to stay -- then i forfeit access to a hospital and a job. if i bite the bullet and try to move to a large city where i can find employment and a teaching hospital -- i'm going to need a lot more money than i have right now or will have anytime soon.

i'm just bitching at this point...

the worst part of it all is the loss of friends. that people can't imagine you are sick without a doctor's approval. what do they know? they go to the doc with strep throat. get medicine and get better. few people have experience with "make-believe" illness. and the fact that i have to use that language -- "make-believe" -- but anyone here who has a chronic problem knows what i'm talking about. the eyerolling. the crossf-examinations. the "you don't LOOK sick." compound that with the fact that (thank god) i'm not 100 percent sick 100 percent of the time. it lets up and it flares. there are days i literally cannot move. there are days where i'm so fatigued i literally can't get out of bed. but what people see is a lazy person. a faker. a freeloader.

i read somewhere that lupus untreated can be fatal in a few short years. there are days when i wish it would hurry up and get me -- just so i can have "i TOLD YOU i was sick" engraved on my urn.

[jbnow]

1. I can't help but

just want to say I know it's hard. There are so many conditions that are hard to diagnose, don't have clear markers, you feel so bad but you "look so good".

It's easy to feel shame or guilt, like a beggar or a fake or whatever, even when you know it is real.

If you can't work and don't have a diagnosis SSD is pretty much ruled out and even if you have one and you can apply it can take a couple years and you feel all the emotions noted above.

I don't know much about lupus. I had a friend I was out of touch with for years that turned out to have it. She went 14 years without a diagnosis. She did go into remission and has been doing great for several years...and I hope you find the dame.

I have a couple friends and a sister that had/have chronic fatigue and/or fibromyalgia. (Also in remission now) I know the struggles they went through.

I have MS and a few other things. That's how I personally identify with the "but you look so good" thing. The only thing that felt worse than that was when I was talking to a new doctor about how my bosses and others were distrustful because I looked fine. He said something like "You have to be kidding". He went on to say if he walked into a crowded room and saw me he'd know right away that something neurological was wrong and went on to talk about my eye movements and other things that were clearly off. Looking so bad felt worse than looking so good!

So many people with MS take years to get a dx. Their doctors are dismissive, they are treated like malingerers or told to see a shrink.

On top of how you feel people perceive you, your changed sense of self, no medical answers, a broken marriage (even if a bad one), many losses and feeling bad, you have money problems. I can imagine the hole you feel you're in with no way out.

It sounds like you still have insurance? Hope so, though doctors have been a source of frustration. Even teaching hospitals are the luck of the draw. I had a bad one, some people have had worse, some have had very good ones and did get answers.

Whatever you do I wish you luck. Just wanted you to know somebody heard you and cares.

[nashville_brook]

6. thanks for listening, understanding, responding.

i wrote that in complete despair. i've been criss-crossing the country, trying to find a new home, with decent healthcare and some sort of social support system. along the way i visited a friend in Charlotte who has just started a new career in nursing.

she works on the ortho wing of an older hospital. pretty low stress. she told me all sorts of "secrets" about doctors and nurses -- like, the do indeed ROLL THEIR EYES whenever someone suggests they have one of these mystery illnesses -- fibro being the grandpappy of "make-believe" illness. Lupus, a close second.

another "secret" she told is that doctors only see their specialty. if you complain of joint pain, likely, an ortho is only going to see bones. a neuro is only going to see the spinal cord, etc. there's ego and turf involved.

the last "secret" is if you tell your doctor what you THINK you have, they will (unconsciously or not) avoid that dx. period. they are the experts. shut up and heal.

[WestHoustonDem]

2. Bitch away. Being sick sucks, especially when the people

I counted on weren't there for me. I lost all of my "friends" when I was sick with Crohns and FMS. You're absolutely right that without a diagnosis, people abandon you. But that was before I found the progressive community in Houston. The friends I have now would stand by me.

Think about Houston. We have a great medical center and tons of DUers. You'll never be alone here and the cost of living is relatively cheap.

[nashville_brook]

7. it's not something you expect...

it feels like being the wounded calf cast out of the herd. with pain issues you have the added joy of being looked upon as a drug chaser by the people who don't you and as a nascent addict by your friends.

here's a secret from my pain experience -- you don't get high when the drugs are working on the pain. it doesn't matter what i'm given or how much -- if it's knocking out the pain, it isn't making me loopy.

the morphine pump was another story. i was a little loopy with that.

[mopinko]

3. yeah, bitch away

first one bit of advice. unless you are talking to a doctor, tell them you have lupus. put a word on it. think of it that way yourself. my dx is still "lupus or something like it" after 4 rheumatologists, and 3 years of tests, blah, blah. it is a slippery thing that can take years to actually nail down. i just say lupus and fibro.
also on the worry front- lots of people have lupus that never have it affect vital organs. i was told that i likely will never develop life threatening symptoms. not like i believe that any more than i believe anything else they say, but....
and something that i have noticed about pain- before i had a dx, every twinge carried the full weight of the unknown, and all the struggles of which you speak. a constant reminder of all of it. it is better now, although it is still like that, especially when you mix in anything unknown. like, i crashed my bike, and it seems to have set me off. or am i imagining it? or am i just malingering again? or....
i understand everything you say. i lost a friend of 20 years. i lost a doc that was also my friend. i nearly lost my marriage. i have been so isolated. my house is a disaster. i never invite people in. i don't really let my kids invite people in. it all sucks. sucks. sucks. sucks.
it is not just you. it is the way it is. you speak the truth. we get it.

[nashville_brook]

8. constant self monitoring

sometimes a flare starts with an itch in the center of my right palm. sometimes it comes soon after a night of having "hot feet." it's the small stuff that foretells weeks of agony.

i'm tired of being brushed off as a hypochondriac. if i don't take note of these messages from my body, no one else will. it's my job, now.

but right you are about the weight of the unknown. that little itch in the center of my palm and the hot, aching toes -- they bug the shit out of me because i know what usually follows.

[blondeatlast]

4. Agreed--bitch away among people who really can sympathize.

One of the reasons I started this group is that healthy people just can't understand that for us, feeling sorry for ourselves is a survival tool.

Even our closest family members and friends can't understand and don't want to know how much a good bitch about our often miserable situations can help.

I've never personally met anyone who participates in this group, but I count 'em all among my closest and most trusted friends.

[nashville_brook]

9. :) wow -- really, just wow.

when i first started lurking here i'd been posting the big forums for a while. i was amazed to see some familiar "faces" and reminded that we are all real people and not some generalized mass of humanity... always okay. always healthy. always vital. our passion about politics makes us seem like warriors, sometimes. at least in digital ink.

even tho i knew i was getting sick, i never pictured myself needing to bitch like this. i never pictured myself hitting rock bottom. losing my marriage. my friends and my home (well, i gave up the home to husband who can afford the mortgage). i figured the doctors would take care of me. i figured my friends would understand and that they'd realize we are all one day going to be "chronic." i figured a lot of things that were way wrong. i also didn't realize that things were slipping away. i didn't have the concept of people abandoning a person in pain. but it's a truism. i think it's hardwired, like a prey instinct. get the sick person away from the healthy...

the lack of creative problem solving on the part of the doctors COMPOUNDS things exponentially (can you compound an exponent?). that tells people that you are either lying or hysterical. lazy or wanting attention. a drama queen? camille.

[ninkasi]

5. I am so sorry for what you are going through

I suffer from chronic pain, and simply can't imagine having to go through life with both the pain and lack of support from family and friends. I am so fortunate, because my husband, our children, and my other relatives are all extremely sympathetic and supportive. It did take quite a while to get a diagnosis in the beginning...I had two ruptured discs in my neck, which were pressing against nerves in my neck and shoulder. I had surgery, but it was too late to prevent permanent nerve damage.

I also have arthritis, osteoporosis, and now ruptured discs in my lower back. I have taken a couple of falls that could have been serious. However...I have the love and support I need to cope.

It should be enough just to know that you are sick, that you are suffering, and to offer love and support...people who love you should not need a diagnosis to give those to you. Sadly, their uncaring attitude is causing you more anxiety and pain, when you need their help the most. I hate to say this, but the people in your life who are taking the attitude that you are just faking having something wrong with you are the ones who suffer from lack of simple human caring. They should be helping, not making things worse.

Sometimes, it's better to walk away from toxic people...that's what I call people like the ones in your life. They not only don't help, they make things worse. You can't afford to let their uncaring, cold hearted reactions cause you any more misery, you already have enough as it is. I truly hope you can get a diagnosis, so that you can start getting proper treatment.:hug: :hug: :hug:

[nashville_brook]

10. toxic people

so true! i married a musician. he was naturally distant -- from a cold family. has some pretty pronounced narcissistic tendencies and isn't very capable of being a 'giver.' the marriage worked as long as i worked (making money). it wasn't good enough to just be a wife and keeping a nice home. he liked me when we were a power couple. he liked me when i danced all night with the fans. he liked me when i lifted him up. when i needed some lifting -- 20 years into the relationship -- there wasn't any to be had. he's been critical of everything having to do with my health -- from the veracity of my complaints to the problems with my doctors. everything is "my fault" is his eyes. "i brought this on myself." yeah -- it all started as i was trying to rehab the house my parents left to me when they died. the insurance and liability was too much. so i came to florida by myself and started working -- out in the sun all day. pulling down old fencing, cutting trees, growing the grass. then, cleaning all the shit out, gutting, painting. sleeping on the floor. alone.

so, i wake up one night in pain like i've never imagined. drove myself to the ER at first light. they thougth i was drug seeking. sent me away. i went back. they said the only thing they could do was give me an epidural -- i said "whatever it takes." the doctor wanted me to understand that it wasn't going to be happy-drug-time, so he came around to the front of the injecting chair and waved the needle in front of me -- "this is going to hurt, are you sure you want to do this?" i thought i had entered the twilight zone. word for word i said, "i don't care if you hobble a foot... if it takes the pain away, i'll do it!"

24 hours later i was septic. my husband flies down from nashville. i need him to get some clothes for me and get back by 6pm, b/c it seems like they weren't going to let him in after a certain time (which seems absurd). he goes to his favorite restaurant for sushi, beer and a cigar. doesn't come in till much later. i was pretty far down his list of priorities.

my story is full of abandonment. at every turn i've been kicked out of the system and i can't stop thinking that it all started with the ER's BLUNDERING in thinking i was some sort of drug-seeker. they made a mistake and after that, the mistakes kept piling up because no one had the straight story.

life is too short for toxic people. life is too short for husbands who put sushi ahead of their wives. life is too short to kid myself that was a marriage. i'm better off. i know it. it helps to write it out -- like 'ride' it out -- only for wordy nerds, like me.

:) thanks for the hugs. they are precious things.

[kineneb]

11. I understand

Until Hubby was finally on dialysis, no one thought he was "disabled" or sick. Never mind that kidney failure takes years to get to the point that dialysis is needed. And that in the meantime, the person feels worse and worse. No, they look healthy, or at least not sick, so no one outside of the docs cares. Fortunately, our friends are still around and caring. But as the caretaker, I know we are alone in this process. And at the end of the day, we still know that he will never "get better". Being stable is his goal.

Good luck, and I hope you get a diagnosis soon.

[Warpy]

12. I was a better nurse because of this stuff

Chronic pain patients on a shitload of meds were every other nurse's nightmare. I understood where those folks were coming from and was pretty good at telling the difference between people who rigidly stuck to their dosages and time schedules and those who were so terrified of pain that they were running into trouble with their meds. More than one time a patient would come in with the label "drug seeker," only to be identified later as someone with legitimate pain and absolutely no problem sticking to a med schedule if someone had been compassionate enough to prescribe the damn meds.

Remember, NO ONE is going to understand what you're going through. There is simply no way they can. The best you can hope for is acceptance.

As for toxic people, yeah, they exist. My mother was one of them, don't think she ever realized what the word "lupus" really meant in daily functioning ability, thought it was a synonym for "lazy." My ex was an alcoholic, had too many problems of his own to cope with mine so I did us both a favor and left. That's all we can do, really, is limit our exposure to them, to detatch and realize they're talking about their own "stuff" and not ours.

The social isolation is terrible and without the computer, I'd probably be spending a hundred bucks a month on stamps for a pen pal list or just go quietly bonkers. It's why I kept the luxury of an ISP over the last 3 years of real poverty.

It doesn't really help when they hang a word on it. All the collagen vascular diseases are ugly relatives of each other, and a new rheumy is likely to disagree with the last and hang a different word on it. The treatment is all the same, though, so it doesn't much matter.

Eventually you'll be able to make your peace with this disease, to tell the world "Hey, I'll do what I can do and if you want more, piss off."

[nashville_brook]

13. What Is It Like To Be a Bat -- classic essay on the inability

to know the inner states of other "minds." be they bat, batty or just in constant pain.

i think there's something in *some human's* nature that attacks those perceived as ill -- taking up too much family resources or just being communicable. we aren't born "compassionate." we have to WORK at it. some would say it's what we're here for.

and yet...

on and on it goes. i'm so terrified of doctors right now it's just not rational. went to the ER last weekend with acute lower back pain. i was certain it was kidney pain. had the heat and the dark urine... but when i went to triage my blood pressure was like 220 over 150 or 170... i can't remember now. they rushed me into the cardiac unit where i stayed all weekend... asking for pain relief... being blown off... giving up... getting so frustrated i just wanted to leave and smoke a pack of cigarattes 5 at a time. one shot of demerol... the whole weekend. i had been getting "sick" with the pain for about three days before i went in. fear. by the time i got there i was, i guess, having a panic attack. or maybe the pain raises your BP -- who the hell knows. i sure don't and never once did doctor come around to tell me anything.

this really happened... at one point i called the nurse, b/c i just couldn't take it any longer. he came and addressed my roommate's pain needs and left. so she calls to him... 'hey -- i wasn't the one who rang you. would you mind taking care of the one who did?"

he said he was in a big hurry, that there were other people needing things, and that i'd have to wait.

wtf. what do i do to attract this shit into my life? the one shot i got all weekend happened right after this... i started telling my roomie jsut a bit of my story. couldnt' stop crying... BP shot up again... finally he gives me something.

why the drama? it's like a game or something. no, i don't have a husband or a relative with me to "advocate" -- guess that makes me an undesirable.

nevermind that... why can't anyone jsut freaking review my tests with me... patient education... show me my imagining studies... do some goddamn medicine.

there goes the BP again!

i have a little BP device for the house... borrowed from my roommate's father. i need to do a biofeedback thing. "brook -- here's a picture of bunnies." take the BP. "brook -- here's pictures of your last 5 docs..." take BP. my hypothesis is that BP is proportionate to non-Bunny images. higher when shown pictures of doctors. higher still when telling my story. critical when reflecting on how much money i've wasted on the bastards.