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If they could just spend one day in our shoes.......just one day! If they could just spend one day in our shoes.......just one day!

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Unread 04-05-2002, 01:06 PM
If they could just spend one day in our shoes.......just one day!

Well I guess you realise by my title post that the medical profession are NOT on my favourite list of people again.
I rang my Immuno yesterday and he rang back last night wondering what I was ringing about...........HELLO:hair: My test results.......he yelled to secretary, excused himself and went and found them-obviously embarrassed - he likes to appear super efficient. Tilt table normal - I knew that.....rules out one more thing. IVP.........give me a minute it's extensive! Bottom line OK now, but in the past IVP's areas of kidney not working well. Add that to my red and white cells/casts since puberty, along with my other symptoms and what do you get inflammation.........why.......along with other symptoms it doesn't take a rocket scientist to work that one out!
He asked how I'd been LOL! SO I TOLD HIM Well he asked!
Said: hmmmmm............how are the anti inflamms going? I said they were helping some but I still couldn't go in the sun, I also had ovaries kick in once then quit next month, I also had a numb face/tingly, muscle spasms, tooth abcess, virus with facial rash, facial rash/worse livedo after fluro light exposure, extreme fatigue etc etc
He said that some people are photosensitive (I doubt he even read my file again!) I said and with that photosensitivity do you get so dizzy you can hardly function, have muscle/nerve problems, get facial numbness/right leg pain/tingly and are down for the count with worse inflammation/fatigue for days on end! He said no, you don't! I said I'm not saying it's Lupus but is that a possibility...........he said YES IT IS! He wants me to go off vitamin D, it should have built up, test again in couple of months. He also said my GP should test my ANA, Anti DNA etc every 2 months and send results to him. He also said the treatment for Livedo reticularis was worse than the condition - hello if it's in my legs/arms could it not be in my brain - I'd say that warranted treatment considering my neuro symptoms. Now this is someone who on visit 1: thought I had Lupus.......blood tests negative..........on visit 2 said ANA negative lupus would be a possibility but they wouldn't diagnose me until my kidney's failed and proceeded to test for endocrine cancers etc., visit 3 who knows what he thought but my photos didn't lie! That's when he ordered more tests.
So he proceeded to start giving me the door's still open routine but that's life..........I said hang on what do you expect me to do........I can't live like this!!!! So........he said I could get the Lupus tests done again first then go on low dose cortisone for a couple of months. That's when I realised that he really didn't look at my file............my mother and sister had severe early osteo!
I forgot about my swollen salivary gland, dryer skin etc and he cut me off (politely, but cut me off) and said could we talk about it some other time he was already running late for a meeting.
So the bottom line is that you virtually have to be dead before they diagnose you and I bet he doesn't put in writing exactly what he said to me on the phone-especially the cortisone and my doc will think I'm in lala land and imagining it! All I can do is wait for my GP to get the letter and read it.........then I'll know. I wish I'd sought a Rheumy appt. at the same time I was seeing him but I thought this would be it. Now I'm broke, left with options that may/may not work and could give me bigger problems.
I'm not a happy camper............sick as a dog..........and sick of fighting for the medical care I deserve. But then aren't we all?
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Unread 04-05-2002, 01:21 PM
If they could just spend one day in our shoes.......just one day!

Oh Lily, I'm so sorry you're getting run around too.....I thought this was going to be it for you I really did.....sometimes I think we should start some sort of worldwide protest just so some of us could get proper health care :burning:

I wish I knew what to suggest, but I do know how you feel, having recently gotten the royal screw around myself...all I can do is offer my 's and my shoulder to cry on if you need one!

What would the tilt table have told you if it had tested positive?

sending many many 's
Unread 04-05-2002, 01:37 PM
If they could just spend one day in our shoes.......just one day!

I am so sorry sweetie What is wrong with some of these docs??? I really don't think they listen nor do they read our charts or their notes. I can think of many docs I had pre-hyst who say something on one visit and I'd never hear another word about it.

Sending all the s that I have stocked in my closet for you!!!!
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Unread 04-05-2002, 01:42 PM
If they could just spend one day in our shoes.......just one day!

Thanks Kim & Gidge. If it was positive it would have meant that I had one of several things when weighed up against my other symptoms. Some possibilities were: adrenal insufficiency, adrenals failing, chronic fatigue ( I already have that if I have a bad run.........and I'm having one now ) and possibly a heart problem, or blockage in vascular system. So really a multitude of things it could point to but if suspected they would warrant further investigation. He just wanted to rule them out in case they were some of the cause of my whacky system. I think we've ruled out a lot of things, and he wants to take the wait and see approach, wait for my bloods to turn positive or me to have renal failure. Wait and see would be a nice option if I hadn't been sick 2 years and had some quality of life. But for now it's not something I want to do considering my mother died after 2 weeks in the sun, being diagnosed with a 'tendon' problem still present when she had a stroke and cerebral haemorhage at age 55. I wonder would he wait and see if it was him. So of course when pressed he offered the cortisone, which covers a lot of my ailments but would possibly make some of them worseLupus is hard to diagnose I know, but when everything leads to it and you've ruled out most other things and have worsening symptoms which land you in ER every now and then, render you useless without an income or much of a life then you think they'd just bite the bullet and diagnose you or at least try the next med on the list - anti-malarials. What angers me is that when I spoke to the Lupus Assoc. here she said he was very good, that he wouldn't diagnose me unless absolutely sure, but if I was bad enough he'd treat me. Well I guess he's doing that BUT he apparently diagnosed a man last year with scant evidence, the guy was shattered went back to him after 9 months. He was then cleared of Lupus (whoops mistake-because positive ANA's can occur with other things, virus, some people just have one) and then diagnosed with chronic fatigue!!! I bet the guy had more of a life than me.
A sex change is looking good at the moment - sometimes I think that's a distinct advantage being a male - somehow they believe them straight off, they don't have to be trialled by judge and jury like we do. I'm still in case you hadn't guessed
Unread 04-05-2002, 01:55 PM
If they could just spend one day in our shoes.......just one day!

that's good, you stay mad, I think it's a good place to be when you're getting screwed around like this !!!

I agree with you that as women dr's tend to try and brush us off as having emotional problems or hormonal difficulties, even my physio the other day started asking me about the break up of my relationship after my hyst and did I think that is effecting how I"m feeling now and dealing with the pain and I stopped her right there, and told her that MAYBE if someone had sorted this mess out back then I might still have a relationship so just never mind! :burning:

I know it's hard to see here, right now Lil, but you have to find a way to hang tough and get to the end of this somehow, just know that we are all here with you and that we will do anything we can to support you.

PS did I ask you if you ever get facial spasms? I've started having them on the lower right side of my face by my mouth, feels like someone is trying to pull my face down ever get that? (sorry to bring it up now, just thought of it)

's 's
Unread 04-05-2002, 02:09 PM
If they could just spend one day in our shoes.......just one day!

No, I did used to get a twitchy eye, forgot about that. Nowadays I just get severe muscle spasms and jerking and sometimes my whole body shakes - this is when I'm 'flaring'. Of course my neck is still sore even on anti-inflamms and I still have my dystonic tremor in it:hair: Maybe I'll just go stand outside the gyn's office who did the hyst with a sign - you too could end up like me, get rid of one problem, ruin your life/job/marriage and end up with more health problems than an 80year old at 44
Unread 04-05-2002, 02:18 PM
If they could just spend one day in our shoes.......just one day!

Ah hun I"m so sorry, well I'll come and stand with you with my sign too, how does that sound, we'd make a fine pair!!! (mine would say something to the effect that "they don't have a clue but boy is she screwed" )

I get the all over body shake but I'm sure it's not like yours, mine you can't always see, if feels like my whole body is "humming"my Mum says she gets this with her MS........???

I keep getting the "you're getting old before your time" from boss, coworkers, family , friends.....yeah well I would like to see how "young" they'd feel if they had to feel and go through what we do everyday!!

I'm right beside ya giving ya a big can ya feel it?
Unread 04-06-2002, 03:07 AM
If they could just spend one day in our shoes.......just one day!


Can I stand with a sign to?!!!?? I am sorry to come in late with your post but wanted to let ya know I was thinking of you to.

I know so well the anger of not getting these docs to tell us anything at all. I don't understand how they can look at you know your in pain and suffering and tell you come back in 2-3 months and we'll see what happens. We should start doing that when they send us the bills...Here send this back to me in 2-3 months and I'll let you know If I can pay it then...I get answers you get paid...sounds like a fair trade to me...you know customer satisfaction and all.

I don't have any miricle answers either Lily...but I did want to let you know someone else is in your corner and I'll carry any sign you want me to at the strike!!!!!!!!

sending huge to you sweetie!!!!

Unread 04-06-2002, 06:09 AM

I don't know what to say except i'm sorry your having such a hard time with these dr's! I do believe what kim says they don't listen or read the charts! Anyways i',m sending you 's and ! hang in there sweetie !
Love Colette
Unread 04-06-2002, 11:24 AM
If they could just spend one day in our shoes.......just one day!

I'm starting to think that's the real reason more women than men get Lupus....... STRESS is a big trigger. Oh I forgot to mention that I thought I'd better justify how I tracked a cycle to him. My breasts get sore on day 11 and it lasts for 14 days. It has done that for the last 14 years, it's my body and I know it. Who the h_ll is he to say "oh it's really hard to tell"..........rubbish I know my body better than him, it's been screaming at me since puberty. And I also know that the reason (along with all my other symptoms) my breasts get sore is because of prolactin in my case. Prolactin-Estrogen-Dopamine......they work in sync. So one upsets the other............body wise and brain wise. And he should know that...........but they either don't think you'd understand or they don't know that themselves! No wonder they haven't done much research on Lupus and hormones. They know hormones are a trigger...........but hey I could write the book. I wake every morning around 3-4am in excruciating agony, my joints are so stiff I can barely get out of bed. It gets better as the day goes on. Which hormone is at stake here-CORTISONE! How do I know that..........years of dealing with an asthmatic child. Whose worse time was (you guessed it) 3-4 am when cortisone is at it's lowest.
Come afternoon it's at a higher level and that's their best time of day. However once you are in a flare of asthma/allergy/auto-immune you eventually get so run down unless treated that most days are crummy anyway, but you still notice early am is the worst. You get tired by the end of the day from normal activities so the picture gets skewed. If they listened, if they really wanted to find out about these things they should ask someone who knows. Unfortunately the vast majority of the medical profession do NOT give women credit for havng any sense. My female gyn knew something else was wrong, very wrong and I think she had an inkling what it might be. She believed me about my cycle and some of the other wierd stuff. She realised I wasn't just a whoosy lady who was having her on. She knew that there was an underlying reason that my hormones created such turmoil, she knew the link.
But talk to a man about it and they haven't been there and they just think you are nuts.........or you must be mistaken. Maybe I will stick with this guy........maybe I could teach him a few things.
But realistically it's not in their best interests to make any of this better understood is it..........they'd be out of a job. Same as the gyn who could offer alternatives to some ladies, spend time searching for answers..........but they don't they get the Lupron or the scalpel out in some cases. Some gyns will take the time, some are knife-happy idiots. We and only we have the power to help ourselves, and if they keep putting obstacles in our way then we have to take stock and sort some of this out ourselves. As females we're all different and we need to educate ourselves. I've learnt a lot from my deep dark days in the jungle the last two years when my ovaries just up and quit after the op for so long. I learnt that most of my symptoms had little to do with the fibroids or the hyst or the adhesion. It took me a while but I knew that's why I kept searching for answers. That and my mother's tragic demise. Perimenopause was hell for her and they could do nothing.........then when those hormones finally gave out and her adrenal glands had to take over (I assume she had less in the way of cortisol because of it) that was when she died. She had a huge flare, her body couldn't take it any more. And she had no help. What's changed, very little as far as I can tell and that was 25 years ago. So look for the cause ladies, don't just treat the symptoms...........because there will be a cause. I guess it depends how bad it gets as to what we want to do about it.
It's interesting because many of you are younger than me, but a lot of the turmoil you are going through I can identify with when I was in my early 30's. They were the early blatant signs, but they didn't stop me in my tracks and life went on somewhat. Major stress via a hyst will bring out any lurking ailment.............we think it's related to the hyst but in reality it was there all along just under the surface. For some of you that's not true, it was the actual op that caused you problems, but for many who still don't have answers............listen to your body, believe in youself and demand better treatment..........you deserve it. and there isn't anyone better than you to assess EXACTLY how you feel and you need to find a doc who will work with you, listen to you and try and get answers. Not just slap a band-aid on a broken leg
Do it before things get so bad that all you have left are band-aids. Cos from where I'm sitting, band-aids just don't cut it. I feel like hell............yes I do, I am unable to work. It's that bad. don't reach that point, try and get answers before it gets too bad.
Me, I'm going to email a young female Associate Professor here (who has kindly replied to me before) and ask her who is doing the research on this stuff - hormones & Lupus.) If she shapes up alright then I'll go to her, if she's receptive she can have my business because I don't have to put up with rubbish like "oh it's really hard to tell if you are having a cycle" - what a load of hogwash!!! I still have a working brain (most days ) and I'm going to work with someone in partnership with this. Not someone who tells me nothing and thinks he's doing me a favour. Not someone who is willing to let me get so bad there's no going forward. Someone who looks for causes doesn't just treat symptoms. If I go down then it won't be without leaving a mark, I've never been a wallflower and I ain't going to start now

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