the view from here

incidental dreams and other musings.....


Saint Petersburg, Florida, somewhere, over the rainbow
December 05
the everything girl
please wipe your feet first
still breathing every day the last time I had it checked..


DECEMBER 21, 2010 8:44PM

I don't want your pity here

Rate: 46 Flag

Having lupus is not fun.

It is not an easy ride for me. I have had it for too damn long. 25 years and counting.

I am tired of it.

My body is tired of it.

I think of little red ants eating away. They eat my body. I try to think of a knight moving in with a sword made of blue light, killing the damn ants right and left.

Lately, it ain't working any more.

Folks often ask me how I do it. No pills. No  big pharma.

I always laugh at the questions. If only everyone understood that many of my other problems are caused by the very prescriptions given to me by the doctors who were 'helping me'. I used to take 17 prescriptions. I stopped them all one day, and wish for no more of them.

I lost two years of my life being doped up to the gills.

The steriods caused me to develope osteoporosis. I got the body and joints of a ninety year old woman. If and when I fall, I am waiting for the broken hip. I cannot imagine or want to imagine being confined to a bed for any amount of time again.

The other pills caused three ulcers. The good doctors managed to laser two of them away. The last one was too large.  I will carry that one to my grave.  Any amount of pill taking risks me throwing up blood and more nausea. Never mind more pain, too.

Nor do I ever want to know again about being in a wheelchair. I spent time in one three years ago. I never could decide why sitting in a wheelchair meant my hearing was bad. At least, that is how it felt when everyone coming up spoke to louder than was necessary.

Now when I walk, I always walk a few extra steps. I remember well when I could not take any. I walk for the ones I have met who can no longer walk. I walk a few extra even when I am tired of walking. For I know all too well here, that the day will surely come when I will walk no more.

I try to be brave and not cry anymore. If I feel tears coming, I say to myself 'I will not cry now. Lupus will never make me cry anymore'.

Yet sometimes I do cry.

I cry for the little girl who foolishly wanted to live to be 100 years old.

I cry for me when I feel my back against the wall.

I smoke marajuana for the pain. It is not legal to do so in this state, at least, not yet. I often wonder what would happen if I get caught for doing so. I have no criminal record. Nor do I want one.

Marajuana also helps me eat. Being in pain, I never want to eat at all. I have constant nausea. Getting the munches can be a good thing. Not eating results in rapid weight loss. I remember well that downward spiral. I once lost down to under ninety pounds and looked what folks describe here as a 'crack whore'. It was no fun at all.

Lupus is sometimes called 'the invisible disease'. I often feel a low grade fever with a flare. I went last week to the grocery store to get something, anything to eat and settled for a frozen pizza and a six pack of beer. I walked up to the cashier and was leaning on my cart handle in pain. The fresh faced girl running the cash register smiled and said to me "You looks so healthy today. I bet you are never sick, are you?"

I did not know whether to laugh or cry. I was holding on to the handle of the buggy hoping not to throw up on the floor, or fall down from lack of sleep. I walked out in shock after paying. My only thoughts were if she only knew....

Chronic, long term pain just plain sucks. I am not the only one with it.

But please, no pity here.

I want no sympathy.

Just understanding


It is not easy to be me.

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My dear sweet wife could have written this, in fact she has told me much the same things. She has Lupus along with Fibro and polymyalgia Rheumatica (forgive my spelling). I have watched her the last four years....from a vibrant, hard working and energetic lover of life, to a shuffling, hesitant, shadow of herself who I sometimes have to help to get out of bed.

She too went totally off the meds which were further wrecking her already ravaged body. Like you, she is never without pain. Her courage facing these hardships leaves me breathless.

I don't know how either of you do it....I don't think I could live like that. Bless you.
I would never pity you, Mission. You are a talented writer with so much inside you to share with the world. Having chronic pain sucks. Some days are better than others. And some days just suck.
Try to keep looking up.~r
I understand why she did it Torman. Mel is a strong woman.
I think of her often here.
I just hope to help anyone out there who could use encouragement. I try here.
(I cannot spell either). It does not matter to me. I know what you mean here.
I keep hoping for relief Joan.
I used to remember what not having pain felt like.
Now, I don't remember any more at all.
I do try to write tho'. It helps me. I hope it helps others.
Mis, you kow I don't pity you. We are brothers-in-arms, fighting contant pain everyday. I want no pity either. Just respect I think I deserve for working myself to death to raise two families. Like the girl at the cashier, people who have never been in pain don't know it. Imagine, looking forward to waking up in the morning. I hate that more than anything. You'll get no pity her, only a great friend thats always here if you need a shoulder!
You know me well Scanner and I am proud to call you my friend.
I am always happy for those wide shoulders of yours. You listen to me whine plenty dear and I thank you for that.
I hear in your voice what I can not help with or do anything about, but I do care and wish for your strength and happiness in some measure. You are a wonderful writer and I have come to appreciate that about you. Constant pain is no joke. I understand. I know what it is to have medicine which is to help, destroy. So I wish you some peace, some sunshine and some relief here among friends.
That is why I write Sheila.
It helps me.
It also sets me free.
I do love the art of wrting here IQ.
And I thank you for the kind thoughts and wishes.
being in constant pain just plain sucks for anyone.
No pity, just an ear to listen, some silliness late at night when we are lonely, sharing laughter sometimes a few tears. Just life Mission, hang in there, we need you.
I need you Rita and I need all the broad shoulders here in the wonderful place we call Open Salon.
I love this place in the cybersphere.
think you have found a good place to be here with friends who care. Stating what you want and need AND what you don't want and need is empowering and that gives us strenght to endure what doesn't seem possible.
You are so right on the evils of big phrama Flower Child. Many seem to not know the problems of taking pills.
I used to say I must be made from steel. I was mistaken. It was tin and the tin has rust holes in it now.
i am dismayed. i hope for you for the better.
Sometimes I think these medicine men make things worse. I am glad you got off the meds but sad you have pain.
I hope that everyone who has good health takes care of themselves Lady Dove. Writing helps me here.
OS is a good place to write.
I love that you can come to us and tell us how it is or you.
Pot is great medicine. They came up with a synthetic pill that does not make you feel good and does not contain all the natural ingredients--and costs a fortune. It's not all about THC.
Love you, Doll.
I am good as long as I don't go plum off my rocker and run screaming down the street naked here Linda.
Gnome, you take care of yourself. Them elves are all over the place these holidaze....
so well told here, mission. i know you hurt, you walk, you deny your meds ... and i am proud of your bravery and strength and endurance in the face of all this. twenty-five years! you have the stamina of a horse!
Thank you O'steph for the helping of your wonderful salad.
I needed it here.
I love ya too woman.
Maybe just the will to endure Diannia.
I don't know how I do it myself.
But every new day brings new possibilities. I can only hope for a better day here.
Great piece, Suzy. I get you completely. As sucky as it is to say, there ain't much to do, but soldier on and you're a soldier of the tallest order. Peace, love and understanding, Sister.

Hugs, M
I am so sorry you are going through this, Mission. You are in my prayers.
Hugs back to ya, big guy.
I try to keep on keeping on.
It is a hard thing some days.
Today has been one of 'em.
I am so tired of it all.
I try to always remember this disease is cyclical Hannah.
It will go back the other way like a clock ticking back and forth.
It is hard to remember that here sometimes tho'.
Like now...snark on my own post. I be dammed....
you are one courageous person. i admire that.
I have to help myself Cyril.
Hell, someone has to here.
I never want to hear anyone say to me that they are sorry for me.
Ever again.
You sound like you're holding up great, really, in spite of it all. I haven't had patients with lupus, but I can imagine an inkling of it from all you have said and all I know. It's amazing what defiance and will can get you, you should keep writing this so others with Lupus can lean on your strength.
I have friends who would say the same thing (maybe not as eloquently). There's a lot of suck-it-up suffering with diseases like lupus -- and that's if you're "lucky." I'm sure others will read your account and find strength and hope in your words.
Slam us with the truth, Mission. We can take it. Thinking about you... see you soon.
I used to try those support groups O.
I have outlived all of the ones I met there.
I quit going. I decided I must be jinxing them or something.
I cannot stand writing about this all the time here tho'.
I work much harder on my poems.
I don't consider this post much as good writing. Just relief writing.
I can only hope I reach a few here Bell. Ihave to quote Trig here and say I have no kiss ass left in me and want understanding.
Ardee, we seriously need to have more than a few beer. Sooner rather than later dammit. I am definitly game here. I need some different walls to study. Mine I know too well.
You're a good, good soul --Mission.
I also listen to new age music and meditate. Bird calls are playing right now. My cat is trying to kill my laptop.
Gawd almighty at the sight.
I have never known what I am good for Chicago Guy.
I do love helping others tho' and always have. It is part of me too, like this disease. A piece of the puzzle that is me.
No pity here . You're a sharer. You want to reach out and affect others who might relate, commiserate, or empathize. It shows.

My sympathies and I hope you keep on enduring as you have.
Oh Gorgeous, the pain is no good, it's exhausting to have and exhausting to fight. It's good if you write about it and what it feels like, if you keep it all in it gets too big. I wish it would be nice and sunny where you are to warm up your bones. Warm sunny hugs and love to you.
Tomorrow is a new day Fernsy. Maybe it will bring less pain than this one did. I still have hope.
I wore the scarf today for the cold out Blue and it was warm as could be. And I think I am gaining weight from that wonderful tin of toffee already. I might as well glue it tin and all to my ass and thighs. cause that is where it is going. I don't care tho'. Love back to you a thousandfold dear.
I admire your voice and courage to share with us. I had no idea but now I do. Please know that you will be in all my best thoughts and prayers for better days. You're a great writer and a strong person.
Rated with blessings.
My love to you Suzy. Love, love love. I know. Lupus, I think that it was Lorianne has too. She's been gone from the site for quite some time. I worry for her. For you. My goodness, hang tight, best you can sweetie. From ME? Congrats for getting off the big pharma poisons. Smoke what you need baby!
I remember her Trig and worry too here. Smoke here, yes I do.
I want it to be legal for all. I be dammed if I can see why not.
It has to be better than big pharma. That shit nearly killed me.
And all the others with lupus kept telling me it worked. It does and has been proven to slow down over active immune systems like mine here.
I am starting to feel twinges of an ailing body and wonder if I will be as stoic as you. Yes, some tears are allowed. They grease the wheels. Rated, with empathy.
I hate pain. it makes me bone tired, weary in an alarming way to me, like I'm sliding to a place I don't want to go to. I do feel for you. we exist within such fragile shells, our lively brains inside of tired beaten up vulnerable bodies. the good days make it worthwhile and the bad ones are like time wasted. I hate it. but the alternative is worse.

big hug suzie but a gentle one.
Is admiration okay? Took a lot of guts to write this.
You have my admiration. I have a close friend who suffers daily with pain and have watched his heroic efforts at staying positive and remaining alive. Pot is his only ally too. I wish I could provide you with some relief and send my love your way.
you tell it like it is, we'll listen.
I feel such compassion for you. That is all. No pity.
Peace, Love, and Hugs, Mission.
Thank you for posting this. We need to be reminded as often as possible about the damage inflicted by the pharmaceutical companies.
I'm not here to pity you, but I am here to admire you. Having lived with a father who was in almost constant pain, I know what this can be like. You are stronger than most, mission. Keep on writing.
What John said. Admiration for your courage, your grit and your optimism. Just wish you lived nearby -- there is medicinal marijuana and the other kind too, lots of it.
"Now when I walk, I always walk a few extra steps."

Yes you do woman! There is no pity coming from here - just a lot of compassion for how hard it is to deal with pain and a body that won't cooperate. I understand.

And, sometimes we all need to cry and have those moments of self-pity. If I didn't allow myself that occasionally, I wouldn't be being honest with how hard it is. It's the difference, for me, of being honest with myself rather than wallowing in it. I know you get that.

I love you woman and am proud to know you on this journey of life.
No pity!!!! Here, have a cookie!! Cats don't share their cookies with just anyone!!!


Rated, but of course!! ~hug~
I got to say I love this place called OS. I thank all for the comments here last night while I was snoozing.
I got one pesky troll here looks like.
I will leave your comment alleyopps. Everyone will read it here and know you well. Trolls suck in the worse kind of way dear.
"I walk for the ones I have met who can no longer walk." Courage I hear here and strength of spirit and memory of the child that was who, I think, never really leaves us. Much love to you as you write from your heart of who you are.
I love the suppost here Anna1. It makes me stronger and makes me want to continue on with my life, such as it is.
To read your story Mission is to read of strength and courage. But even those with such strength and courage need a shoulder, an ear or a helping hand from time to time. I am here ... we are here when you need us.
That is the reason I wrote this post Kate. I have had a rough go of it here lately. I think it is the cold weather. I got to blame something.
Support and community is what it is all about.
Mission. Many a day ... I think of You etc., Honest.
I do pray. Some mors I'll yodel off pray-hymns too.
I don't always know what to 'say' for crying out loud.
I love when I can sing Happy Day and fox yelp backs.
They sometimes will begin yelping. They puff weed?
Somewhere in ancient literature, I underlined this:`
I saw the glistening hemp flower glistening in the sun.
I admired the sparkling plant, and plucked for Friends.
I paraphrased the sacred literature. I'll try to find a 'bud'

can. Then, send that rusted 'bud-tin-can' to Eric Holder?
He (smile) cancan boogie on a B. O. Oval Rug a` Cha Cha?
He can pluck the tin can and fill with Pepto Mountain Dew?
Peace. Understanding
ERric Holder Puff Bong.
Buy Pot Holders for DoJ.
Pray. It may help crooks.
Prayer bounce off walls?
Wall Street pray to who?
I read in Greek beliefs ...
The old Theft Force God!
There really is a Punitive!
Nature does get vengeance!
It's no hard to see - if Ya heart's`
are right...
and Heart's under a left rib cage.
It's no ole' mumbo-jabber-gibber.
The cold seems to make a lot of things worse ... cuts right to the bone sometimes. Can be bloody miserable. I am sorry to hear that it has been particularly bad lately. Does anything at all seem to help?
I yodel too Art. I scream out in the woods where no one can here me. I yell and holler outloud.
Then I feel better for a while and laugh at myself.
I spend much of the mornings meditating Kate. I listen to soft nature sounds on my headphones and try deep breathing.
Cold does affect this. It causes more pain.
I cannot say enough that relaxing in a hot tub running the jacuzzi jets with added sea salts and epsom salts helps more than anything.
I always feel better doing so.
I am glad that you have found some things that help ease the pain just a little. Attitude is a big part of many battles and I can see you have a great attitude. But, of course, even the greatest of attitudes can be drained away at times and particularly so with pain ... constant pain.
I share constant pain with many others Kate.
It does drain the soul tho'.
I release it writing and try to move on.
I can change myself and my attitude. I try to remember that here. it helps too.
I admire your courage and strength.

I admire you.
We are lucky that you share with us your painful journey. It is only by luck that some of us have to face the pain that you deal with every day, or that allows others of us to escape and enjoy continued good health. Your courage in the choices you have made is instructive for all of us.
I say if you got good health Sophiea, enjoy it while it lasts. Having a sick body is like driving a lemon car that cannot be fixed.
You have to fight to keep it running.
pain sucks, so burn one down and maybe there might be another herbal remedy out there,. i'll get back to ya.
My body has been severely damaged over the years also, my solution besides pot is helping Vets with severe disabilities learn to overcome the obstacles that are put in front of us everyday and realize they are still capable of many things. It eases both our pains. Never give up. older/exasperated R*******
I say go for it John. I have tried many different things on me.
I might as well. One called yellowroot works for swelling. It is a bitter herb tho' and not to be taken without learning about it first.
I volunteer here O/E. It helps me and helps others too.
Chronic pain is a bitch. It ain't easy to live with but I got to somehow. I feel ya here.
I'm glad you write here. I never knew this about you until I read this post, so this was completely news to me. As stated, I'm glad you've found a vehicle for writing here and are able to share your insights when you do.
well Duane. I try here. I TY for the kind comment.
Thanks M -

We who are forced to be aware that we co exist with little understood life forms within us are used as lab animals for all sorts of creepy corporate types. Beer and Pizza! The best cure!
Mission, you're about the last person I know on here who would indulge in a pity party. Doesn't mean you can't throw it out there once in a while. I'd like to say I know how you -- and Mel and others -- feel, but I'm not a liar. I simply can't imagine what it's like....
hugs and empathy. r
My biodad has fibro- chronic pain is hell on earth. My mom's best friend had it and her lung cancer dug deep into her bones without her knowing, because she was so used to being in that level of extreme pain that she didn't know the chest pain was something "serious". I wonder how bad her doctor felt about that after pooh-poohing her for years? There needs to be better solutions for pain control than what we have now. At least now we were taught in school that pain is the 5th vital sign, and to listen to our patients.
"I walk for the ones I have met who can no longer walk. I walk a few extra even when I am tired of walking."
Despite (because?) of your pain, you remember to think of others. My brother was in a wheelchair on several occasions and probably would have ended up in one had he lived longer. Thank you for giving me a way to honor him and others every day.

I have a friend with me right now who is living with rheumatiod arthritis and she says the cures are worse than the disease. This was true for my brother as well. Sounds like you are living your life on purpose. It's admiration not pity you deserve