The last two days I've just stayed in bed. But last night I got the money to get the refills and the meds were called in and waiting for me today. I get them from Costco because they price their generics reasonably, which is a requirement for me. The problem is that damn store is huge and the pharmacy is on the other side from the entrance.

So I'm dreading going. But it won't get better unless I go. I take my cane, which I usually do even when I'm doing much better. Getting out of the car, I pause to catch my breath before I lever myself up. This is going to be bad.

I walk as slow as possible, but 20 feet into the store I have to stop and rest. I'm so inactive these days, that that's its own problem, but most of my problem today was from pain. Pain saps your energy. I was in a cold sweat, my pulse and respiration were racing, I was dizzy. So I go a little father, then rest. Leaving the store, I rest on a bench for five minutes before going to the car.

On the way home, I'm in this fog of pain. I didn't want to get out of the car. I walk very, very slowly from the car to the apartment. I sit down and don't have the energy to do anything for ten minutes.

Eventually I take some meds, including a double dose of the narcotic I'm taking, and then lay down. I'm laying there thinking "I can't do this anymore. I can't handle this." I feel like crying. I think that I'm angry but I don't know who or what I'm angry at. I wish there was someone there to hold my hand, sympathize, tell me it's going to get better.

I'm feeling a bit better now, but today has frightened me. I didn't realize how bad the pain and disablement has become. I should have known, but I try not to think about it. What is normal for me on the meds today is what was normal without meds two years ago. It's always getting worse. Looking at my x-rays, I have no cartilage in my hip joints, it's bone against bone and they're grinding into bits. You can see the bits on the x-ray.

I've never really allowed myself self-pity, and it's not because of some idea of being strong, or whatever. There was a time when I had my surgery at 10 years old, where I was laying in bed one night in the boy's ward, hurting from my surgery and, worse, feeling abandoned by my parents, who couldn't stay in town while I was in the hospital--they came only for the weekends. And then this kid who'd been brought in that day, he was in a car accident and he was completely paralyzed, well I heard this dripping sound and I realized that his urine bag was overflowing. And I thought that he must hear it too, and how humiliating it must be. And there were kids without legs, without arms, spines bent back into themselves. I was better than most, I realized. And I've pretty much always felt this way. For years it was easy because I really was better than most--better than any of my relatives or immediate family with the disease. After that surgery when I was young, I was almost normal. I was active, I skied, hiked, did lots of stuff. Only started to get pain when I was 21, and then pretty mild until I was 30.

And even today I still feel lucky. I have friends and family who care about me and help me. I'm bright and resourceful and there are things possible for me in the rest of my life that wouldn't be possible for many other people.

But today it doesn't seem so much that it matters how relatively better off I am than others. How can it matter if I can't deal with it? I feel like this is killing me and today I wondered if it was going to win. And what do I do? I indulge myself with this unprecedented post. But in the end, it's just one day at a time, or one day after another, from a more despairing perspective.

I wish there was someone there to hold my hand, sympathize, tell me it's going to get better.

Well, if I were nearby, I would do that.

Sorry you're having such a tough time.

(((hugs)))

*hugs*

actually you did deal with it. You won. You got the meds and took them. You deserve respect and certainly have mine.

Email is in my profile if you'd like advice or help on navigating the healthcare or financial systems...

Dude!
I've no words for you, nothing comes close. Well, maybe I got some words...

Your own personal problems are the ones you should deal with, are the ones you should have the most sympathy with. Once you get on that "I shouldn't feel so bad because xxx is worse off than me" trip, it's too easy to feel guilty. Never forget that misery, pain and unhappiness is "turtles all the way down", but it's turtles all the way up too. Wallow away. It's only the meanest of people that'll hold it against you.

You are lucky, but you're unlucky too. As am I & as is every person on the world.

But you can deal with it. Tomorrow, when the sun shines in through your bedroom window, and you remember something small or fragile or funny or beautiful, you will be able to deal with it. For today though, pull the blinds, lie in your bed and allow yourself the extravagance of despair.

On a less reflective note. I'm playing radio. I had Waking the Witch on earlier, and just for you I'll drop it on again. Because I know you like it, and because I'm desparate for listeners.

I must agree with Grace. It does not sound like pity to me but an honest, very strong character facing what is true. You sir, are a man of great honor, in my eyes.

(((hugs)))

I'm so sorry you're in so much pain. I feel helpless. Know that people care.

I never have the right words to say.

Sometimes we can't help but feel sorry for ourselves. That's the thing with perspective - things closer to you just seem much bigger.

oh god, this is really choking me up. I'm so sorry. My fiance just got through with hip surgery, she went through what sounds like this same thing you're going through - bone on bone. She had to have her hip rounded/scooped out so the femur head would fit better in the socket (she has hip dysplasia). She's getting better now.

It sounds like you need surgery. If you like, I'll get you the information for her doctor. He's brilliant, and he's one of five or so in the US who perform it.
Please e-mail me.

i know someone who was in a car accident young and had to have his major joints replaced by his 50s on disability. it solved his physical pain problems, and i didn't think it was uncommon.

Fuck, kmellis, I had no idea. Is there anything that can be done about your condition?

(((kmellis)))

Also give yourself credit for getting up, turning on the computer, and reaching out to your friends when you really needed support. Given the despair you're feeling, and how you feel about that despair, that was a smart and brave move. And as bunnies, our hugs are soft and warm and don't hurt a bit.

Hugs to you, k. Bunnies will be there for you, however virtually.

*giant squeezing hug and rocking*


can you get into that prescription assistance thing from the drug companies, where they give it to you free? or can your doctor load you up with samples for times like this? it never hurts to ask. or maybe there's a community thing where they could ensure you never run out? what county/state are you? we'll all research if you want. or is there some teaching hospital/university where they'd cover an operation as a teaching opportunity? hip replacements are very common nowadays and i bet student doctors need to learn it and see it, no? we can all work the system--many heads are better than one--we all can break down walls much easier together, i'm sure. : >

(i bet we could get you painkillers too if you need--just ask)

I'm so sorry you're going through this kmellis. Tales like this are what got me into political activism - well, okay, drinking liberally anyway. Our system is just so goddamn wrong, on so many levels and I feel sick and helpless and sad. ((((((((kmellis))))))))

I'm really sorry to hear of this, kmellis. I agree with what others have said: this isn't petty self-pity.

I send you blessings and sweetness and encouragement. I wish I was there to hold your hand.

K, I'm in town, as you are well aware, and despite our past difficulties, I would be more than happy to go run errands for you or whatever you need. You probably don't want hand-holding or anything else from me, but please know that you're in my thoughts. I'm so sorry you're in such severe physical and emotional pain, and I truly hope you can find some avenue of relief immediately.

You've had a rough few weeks, kmellis. And being in chronic pain pretty much gives you a free pass to load up at the pity buffet. Don't be so hard on yourself. Sending tender forehead kisses your way...

Man, K, that sucks.

You'll be in my prayers. Wish there was something practical I could do (not that I don't think prayers are practical, but you know what I mean.)

And if I were you I'd take postmodernmillie up on the offer. Sometimes ya just gotta have some help.

Oh, and do check on the possibility of getting those free meds from the pharmaceutical manufacturers. That's what saved my bacon with the bipolar meds.

((kmellis))

Kmellis, it takes strength to reach out for help when you need it, so you are strong. Are you seeing a counselor? Chronic pain will depress anyone and seeing a professional can give you extra support. Anyone in your position needs a lot of extra support.

More hugs coming your way. This isn't self-pity -- but I wouldn't begrudge you even if it was! -- it's an honest and honorable assessment that you hurt. I'm a big believer in being grateful and looking on the bright side, but it's absolutely true that chronic pain can be so exhausting and frightening, and it's equally true that there's nothing wrong with just saying so. We live in a society that pathologizes illness and imperfection, as if we are supposed to feel shame on top of everything else that pains us. So I'm glad you're reaching out, and hope you'll take up millie on her offer to help if need be, and let us know if there is anything we can all do together (chip in in some way? Show up en masse in bunny suits? Do not discount that possibility!). We're wishing you the best.

*smooch*

Aw hell. I just spent a long time figuring out what to say, and then got distracted and closed the wrong window and lost it.

In short, I'm really sorry to hear about this, and would be there in an instant to help with Costco/library/handholding/whatever if I could. Also, grace and jelly are right; you did win, and there's no shame in being straight up about what's going on.

On preview: I'll join scody in a bunny suit if necessary.

((kmellis))

I wish I could tell you how to navigate the health care system. If you were anywhere near me I'd go and get your perscription for you. I've been there, and it sucks mightily.

And it isn't self pity. It's honest. There will always be someone worse off, but it doesn't mean you should be HAPPY you don't feel well! Seanyboy is right, once you get in that mindset you'll actually feel bad about taking care of yourself.

I don't know where you are, state wise, but I know NY has a state insurance program that's a bit easier to get into than medicare, and offers free or subsidsed insurance and perscription coverage. It may be worth looking into if you're not insured.

How about your doctor? Would they be cool with giving you some samples, even if it's a lower painkiller than you normally use, just to get you through should this situiation, god forbid, ever happen again? After my accident my doctor did that for me.

also.
≡ Click to see image ≡

(((kmellis)))

You have a bunch of people caring for you. Although it is virtual, take what you can from that.

You've been given a couple suggestions above and an offer of help from someone who can be there (I'd offer myself if I were in NM). There's no shame in getting help when you need it. Self-pity? Maybe. So what if it is? You're hurting and are allowed to vent.

≡ Click to see image ≡

seanyboy is so, so right about it being too easy to feel guilty if you gauge your lot in life by the worse lots of others. Worse than that, you're using a movable star as your compass. When I get upset about my accident and the damage it did, or angry at the person who hurt me, I get no long-term peace from the cold consolation that other people have it worse. I mean, sure they do, but you only live your life, and sometimes it's too heavy. I think whatever peace there is to be had has to be between you and you, independent of the luck of others. deborah pointed out there are a lot of people caring for you here, and though it's not the same as having them in the room, it's still gotten me through the thin times. And about crying? Mostly a relief, in the end. Hang in there.

Oh, dude, I had no idea of all this. I've watched my mom become almost immobilized by arthritis in her knees over the last 15 years- after Vioxx went off the market, her doctor hasn't been able to find anything to put so much as a dent in her pain. Through it all, I've gained a HUGE amount of respect for people who can even function while living with chronic pain. The fact that you're still here says volumes about your strength.

There are a lot of ideas being tossed around in this thread- if any of them sound like they would be of help to you, speak up! I wish I wasn't half a country away from you- you wouldn't be making that hike across Costco again anytime soon, if I were closer.

My email is in my profile as well... I'm a good listener, if you ever just need to vent. *hugs kmellis*

I don't know what to say. I'm really touched. I'm also really tired, so I can't be my usual wordy self. I've pretty much finished applying for social security disability and am waiting for a decision. The whole point of doing this is to get medicare and get both my hips replaced. (I think I need my left shoulder done, too.) My sister, who's ten years younger than me, has already had both her hips replaced. And it's made an enormous difference. My dad, too. I've always been better off than the rest of my family, but the thing is—I've not had anything done, and they have. So I'm now pretty much worse than anyone has been, excepting my grandmother.

I have family here, that's a big part of why I came back to Albuqerque and left Austin. They're all willing to help me do things, and they're all annoyed with me for failing to ask. It's hard to ask. And any of them would have fronted me the money for the meds. But...I just don't think that way. It seems so alien to ask for help. I'm better than I used to be, but I still mostly don't. So, anyway, it's not that there aren't people to help me and you guys are so sweet to offer help and tell me that you'd help if you were here...but if you were, I'd not be asking you for help, either. So, really, it's my fault.

Hugs and whuffles to each of you. You're really nice people.

kmellis, if you feel this bad again do not hesitate to come here and tell us. Or write to us via e-mail. When things are crushing you it's not wrong to ask for help or even just ask someone to listen. Take care of yourself.

But you still want us to show up in bunny suits, right? Please say you still want us to show up in bunny suits!

*fluffs tail*

walk it off

Take it easy now, kmellis. you got over the worst part (at least for now). A couple of people I know (unrelated to each other) are in the same situation; one got a hip replacement and the other is fighting it. They are two of my most favorite people and I suffer to see them in pain. But they are also tough nuts like you, they never ask for help. I guess living with so much pain on a daily basis forms your character likewise. Consider me also among those willing to help if needed.

I'm so sorry to hear this, kmellis, but I urge you to allow your friends and family to help you when it gets to such a breaking point.

I don't know if you view it as weakness in yourself or merely as an inconvenience for others to ask for any kind of assistance, but I think you should consider that sometimes allowing the ones we love to help us is one of the more significant expressions of our feelings. Wouldn't it hurt you a bit to know someone you care for resists asking for your help when they really need it, and wouldn't you actually be grateful to have the opportunity to do almost anything to provide them some relief and comfort?

"walk it off"

Okay. Bye.

kmellis, I'm glad you chose to let us in on a little bit of the daily problems you've been facing. You've made allusion before to your condition, but it's hard to have a clear sense of it without a detailed description such as you gave today. In some ways it sounds as if you were surprised as well, which is enough to make anyone feel overwhelmed, especially on top of the pain you're feeling. Your stance sounds more like bravery than self-pity to me. I wish that there was something substantive I could do for you. Take care of yourself.

kmellis - you may not have to get your hips replaced!! The surgery my fiance had was to prevent a hip replacement. She thought she'd need a replacement too, but then found out about this preventive surgery. Please consider this before removing your hips. Please e-mail me if you're interested in finding out more.

My opinion of Wedge has been damaged, possibly beyond repair.

In all fairness, it may have been a mistake.
He may have thought "When I'm at my lowest, I walk it off" without placing the resulting statement in context.
I hope, anyway.

There is some ambiguity, but I interpreted wedge's comment unfavorably because of past indications of hostility from him towards me. It did upset me a lot last night. With all the kind and caring comments it does seem silly to let an isolated hurtful comment bother me—but this post is probably the most raw and vulnerable thing I've ever written publicly.

hellbeint, I'm pretty sure there is no alternative to replacement. My problem is not so much dysplasia as it is degraded or absent cartilage. In fact, the dysplasia I do have is actually helping me in a roundabout way. But what I found out only in November is that my osteotomies on each of my hips when I was a child complicate or perhaps even prevent a replacement. I'll cross that bridge when I get to it.

Again, I'm very touched and reassured and comforted by the support and kindness evident in this thread. It does help, and I appreciate it. I'm feeling much better today—I think the very strong NSAID I take has an effect within hours and I'm also taking the codeine regularly, at least for the next couple of days. So I feel much, much better today and my emotional state is accordingly greatly improved.

She had loss of cartilage as well, and yeah, it all stemmed back to her childhood too, something her doctors never spotted.
Well, I'll send you the name of the procedure when I find out, and you can research it further if you care to.

Take care, and keep us posted. Glad to hear you're feeling better.

my comment was intended to address larger, more pragmatic issues eg the reality of american health care, philanthropy, dignity etc. note: i am not actually a faith healer

Who is this Faith?