Just Grrrrrrr why does it have to be invisible?

So i told some of you i would update you after my appts from yesterday and was so exaughsted after them that i went home and slept and did absolutely nothing.

Well the oncologist pretty much didn't care and implied im a hypocaundriac and im blowing a few little bumps on my foot wayyyy outta proportion....which im not 1 they shouldn't be there 2 they shouldn't be so painful 3 ive had them for 5 years and 4 my foot shouldn't change colors so please if im blowing that out of proportion then i would love to know what the right amont of everything would be

after that i went to the Podiatrist and he was the complete opposite of what he was the last 2 times ive seen him. He was asking about home life and relationships and junk and im like what the heck does that have to do with the lumps n junk on my foot, which he thinks are AVMs. i guess he thinks that me having a nonexistant relationship with my dad is the reason for my physical pain and pretty much called me a crazy person again....like seriously?! honestly i could care less about my dad he is a bad person that shouldnt be in my life at all

The only decent thing that came out of yesterday was i have a biopsy on 2-16.

but on top of it all noone wants to give me ANYTHING or any form of adivice on how to get out of pain and im like all GRRRRRRRRR and im in this big circle cuz pain hurts and causes stress so i see drs who are nuts and do nothing which stresses me out even more which causes everything to become more adgitated and its just a giant crazy mess

Has anyone been called a hypocaundriac by drs because you cant SEE lupus but its there?

what do you do? im only 17 and its incredibly difficult how do you guys being older than me handle it?

well i have a rhemy appt next tuesday and moms at the point that if we don't get answers with this set of drs im either ending up at a big research hospital like st jude or something or shes sending my paperwork to university drs in farther places to see what they say

Im so sick of this i just want answers i want to feel better i want the pain and everything to go away and im just hitting a wall with drs again. JUST because im 17 doesn't mean im crazy and drug seeking and JUST because you can't see it DOESN"T mean something isn't there.

man some drs are SO STUPID

any advice on all the junk and your experiences on getting answers?

how about what do i ask and tell my Rhemy next week to get the answers we need?

thanks guys and idk what i would do if i didn't have people who truly understand some of this

Mary

O man all of us here have gone through this and you are absolutely right to say that it should not happen. It Is so frustrating!

This is something I struggle with every time I see a doctor because if you have ever had a blue day or any kind of stress it seems to stand out in huge neon letters and puts every doc into a kind of trance...they turn into evil droids who sputter a blanket diagnosis on us long after their brains have shut off and robodoc takes over. "THIS IS A SIM PLE CASE OF AN Xi ET Y AND NO THING MORE ...beep beep beep, NOW GO A WAY AND DO NOT TAKE ME TO YOUR LEAD ER LEAD ER ER ER ER. Good Bye."

It sucks.

One thing that has helped me is being in this group of people; even if I don't go through my whole story with each new doc I have something very powerful, and that is Knowledge of what others have done, or tried, what works and what doesn't. So now when I see docs they also see me: a calmer, well informed, equal. I see myself differently and though it won't change a crappy doc into a saint, it does change things on a very real level. Being prepared for each visit helps too...try to have reports and lab results from other doc (I am still not with it enough to do this, but I am trying, one turtle step at a time.) And if you don't get all the answers in one visit, smile on the inside and say to yourself, "In God's own time, Sweetie, we're gonna be fine."

or something like that to reassure you that it will be ok..just that little exercise can cause the relaxation response,

( http://www.relaxationresponse.org/ )which does not cure what ails, but it helps you feel more comfortable, and more open to the cues and clues about what step to take next.

and of course come back "home " to lwl and let it all come out--we can handle venting stress and frustration.

so these are just a few things that have helped me...i know others will have good tips too...and soon you will have your own bag of tricks to rely on. Here, here's something you can use for now till you get your own:

Hi Sweetshortie2012,

Yes I have had doctors tell that it's "all in my head" or the doctors that act like you are wasting their valuable time.

I was diagnosed when I was 24,and for a long time I just let the doctors talk to me like a was a crazy person and sometimes I would go home after my appts and cry. When I had finally had enough I told my doctor that I was there to get his help not to be insulted and ignored! Remember This is your life and your body if the doc you are seeing is being an get another one! Always remember YOU DESERVE THE BEST!!! don't take any less.

God Bless You

I hoped this helped! P.S. it might do some good to have your mom let the doc know she does not like how they are treating you!

It's hard sometimes...It's like how do you NOT know there's something there you know lupus exists but why in the world is my Oncologist and my Podiatrist trying to tell me i don't have it. THAT'S NOT THERE AREA OF SPECAILTIES!!! its so aggrivating.

as for the blood tests ive had 5/7 positive ANAs and somewhere in my "book" there's an esr and a few other tests like that. I was looking through my book a few days ago and under alot of my ANA tests there's a side note that says suggests active SLE

I'm like really are yall stupid?!?!

I know it's not all in my head and theyre morons for even saying it but it still kinda hurts it's like what am i doing wrong that they don't believe me when i KNOW somethings wrong? and i know i can tell them to take their words and put them somewhere but then im afraid not only 1 mom will be mad at me cuz she knows im very respectful to adults even when theyre wrong and it takes alot to push me off that cliff but 2 because what if i tell a dr to go jump off a cliff when he's someone who can help me. like the podiatrist is the first one in 5 years to be going for a biopsy and i don't want him to be all mad and discharge us

but thank you guys for the support and knowing how hard this can be at times

SweetShortie, I am so sorry that you had to go through that. It really is infurating and upsetting. I remember years a go when I went to a doctor over something. He was listening to my heart or breathing when he asked if I had a lot of stress in my life. I told him no more than any one else. His nurse was standing behind him and actually gave me a wink and a thumbs up. Always remember that you hire the doctor to help you. If they don’t help you, fire them. It took seven doctors to figure out my thyroid. Another seven to figure out I had Crohns and yet another five to figure out I had Lupus! One of them that I went to for fatigue actually handed me a book on faith and insinuated I had emotional problems. I was so stunned that I left with the book. By the time I drove home I was so mad that I fired off a letter that told him how inappropriate he was. If i needed a minister or a physicatrist I would have gone to one. Remember if they start down a path that you don’t like, don’t be afraid to set them straight. You are the one that is in pain and has something that is causing you problems. You can always walk out if they are not helping you. Hugs and prayers!

Mary
Well my son had the same thing when he was 6 yrs old it took the docs awhile to figuer out what it was I felt so bad for him he had to walk on his tipitoes. Just so it would not hurt him but I had to keep pushin and sometimes had to go crazy mom on them so they finelly did surgery and it was a ciss wow crazy ! But it came back so he had to do the surgery again he was scared but this time they gave him antibiotics and it has not came back he just has alittle disconffert now in then he is 19 now but ur right they don’t belong there and everything ur saying. Is what kinda what my son was saying .well tell ur doc maybe he did think of this one I hope all goes well .

I like Janice's robot answer!!!!!! So true! My story was I diagnosed with lupus at 19 with a positve biopsy for lupus mephritis, nearly died, multiple hospitalizations etc, Was treated aggressively for years yada yada yada then had a long period of quiesence Coming out of remission 5 years ago I could NOT convince any doctor specialist or otherwise that I was in trouble to the point that even a rheumy consult decided that not only did I not have lupus but had NEVER had lupus. My comment at that time was that it is not wise to trivialize past illnesses and unfortunately I was right. 3 years ago I had a crisis was hospitalized near death and have continued in a full flare since then. So once again I have the diagnosis of lupus but at least I no longer have to argue with them

Hopefully the biopsy will give some answers and maybe even some solutions. But be careful of diagnosing yourself A positive ANA does NOT mean that you have lupus and trust me you don't want it. Praying for something simple and fixable :>) From the American Journal of Rheumatology "That said, only about 11-13% of persons with a positive ANA test have lupus and up to 15% of completely healthy people have a positive ANA test. Thus a positive ANA test does not automatically translate into a diagnosis of lupus or any autoimmune or connective tissue disease." What OTC meds have you tried for pain?

Mary,

I remember this, before I was diagnosed (I'm 64). An emergency room doctor diagnosed my autoimmune hepatitis (non viral) and lupus. I also saw at least 5 doctorss before this over two years. Talk about frustration and everyone treating you like a hypochondriac looking for "druuuuuuuugs," I am very sick with four autoimmune diseases and I don't have "all" of the antibodies. However there a key ones ask your rheumy.

If your mom has a medical plan see if she can demand better diagnosis and care for you through patient services--other doctors.

You're bound for a rheumatologist and this is a start. All rheumatologist do not walk on water. Be assertive ask for better care and pain medication (not NSAIDs or aspsirin or plain tyeonol). One of these stubborn doctors just has to experience 5 minutes of pain from lupus or any other autoimmune disease.

BTH, I have autoimmune vasculitis (vascular) too.

I really hope you find an empathetic rheumatologist. You shouldn't have to go to Mayo Clinic or John Hopkins for a diagnosis. Don't trust a doctor unless you connect. "Emotional" problems is a medical cop-out when the doctor doesns't know what to do.

Don't back down. And re-read Janice's response. Janice always has some sage advice.

Be well!

I know but its hard and the podiatrist is FORCING us to stay with the oncologist he refuses to let us get another one yes guy drs suck! they just don't understand but think that because theyre guys they know everything.....i hate seeing them but when its the only option you have when on certain insurance what choice do i have?

and I will keep fighting cuz all though it cant be seen i KNOW what i have now i just need someone to believe me enough to give me the meds i need Ive tried everything i had a Norco perscribed to my bro-in-law whoes 3 times the size of me burn out of my system in 2 hrs i usually take tramodol 50mg or tylenol arthritis 650mgs 2 of them in 2 weeks my body has built up enough of a tolerance that all they do is mess with my head they do nothing to ease the pain ive been taking potassium which helps a little with the charliehorse ish thing in my calf that makes it hard to walk but today it felt like my leg was on fire...talk about excruciating pain that you cant escape from especially at school..... :(

I have had 4 drs all diagnose me with lupus 2 rhemys a GP and a Neuro when we go to go back either they send for a confirm just to be sure *which i understand sometimes, they are not all geniuses* or our insurance changes and we can no longer see that dr so i get to start all over again because mom forgets to get his paperwork

believe me i KNOW ive been dealing with this for 5 years i was treated once 4 years ago and im pretty sure i felt great then because i got to walk all over navy peir without any major problems granted i was up to a size 7 *i wear 16 in little kids jeans** he put me on prednisone then

i mean right now the 8 hrs of school are horrible i can't do stairs because of my ankle and by the time im even 2 hrs in which are both pretty much free time computer classes im am BEYOND exaughsted moving is like must sleep can't go on blehhhhhhhhh nap time ....no must learn can't fail ..... ahhhh idk and it goes on like that for the rest of the day fighting the fatigue to pass the class slipping in 20 min naps when i can

how do you guys beat the exhaustion?

and NOW moms going through stuff with her bf so she's in the other room drunk which i am NOT ok with this is so unlike her! granted im not sure what happened but still its like ????????? so i get to hide in my room the rest of the night. :(

just wonderful i feel like my life is falling to pieces i have nowhere to go drs lead me in circles my mom can't handle the stress my friends don't understand the teachers try to sympathize and the councler just says ignore your medical stuff and focus on college and you'll be fine and im just like...IDK

i prolly would have gone nuts by now if i didn't have you guys YOU understand what its like to go through all this the crazy drs the pain and fatigue the circles the people who just don't get it and everything you understand better than most people

and yeahh jans been a great help i got frusterated in class earlier so i pulled up this on my phone and looked at the pic and some of the comments and i felt a little better and decided a nap would help too *yes in class*

thanks again

and im trying to get better but what do you do when no meds help and missing school isn't an option and drs wont give you ANYTHING to even try to help its a little hard but Rhemy appt on tuesday its only 4 days away....

weet sweet shortie, excuse spelling i am in a rush....(((hug)))

Dont forget your lunch! I made a sanwhich for you.

The bread is Whole=truth bread; it helps you acknoldge the truth about your pain which is that it sucks.

The mddle is a prayer something like this

"O Lord, I love you and I know you love me; Come here I need to lean on You; hold me, I am choosing to trust you."

Then another slice of Whole truth bread that is kind of a relief because the whole truth is that this pain sucks and this situation sucks, but there is some kind of hope inside...and the hope is getting stronger every day.

gotta run for the bus now...you are in my prayers today

Hello Mary , am Beverly L., sorry to hear that you are haveing a hard time with the doctor's - smile it will get better . i was diagnosied Feb.7 2011, and it took about 3-4 months B4 they found out that it was LUPUS . I know it sounds bad to say RELAX and don't stress , but hay that's what you have to learn to control , cause the flares make the pain very bad ... The doctors are always puzzled because lupus mimic other diseases , there are so many tests they they have to do ( and it makes you feel like a pin cushion-LOL) . Oh yeah , write down the things ( pain ) and how you feel , what hurts , the times where you start feeling tired , anything that happens WRITE IT DOWN - even if you don't think it is important . Am 44years old , and this is so hard for me to deal with , but know that you are not ALONE Living with LUPUS .... You can talk with me at anytime .... Beverly L.

Hello Mary , sorry to hear that you are not haveing luck with the doctors. It was hard for me when i was diagnosied Feb.7, 2011, there were sooooooooooooo many tests , i started thinking i was a pin cushion - smile ... The problem that doctors are so puzzled about is because LUPUS mimic other diseases. It's hard to pin point it . It took 3-4 months fotr they docctors to give me results . 2 thing to do is: Don't Stress and Relax , yes it sounds hard to hear i know , but believe me it really works , you have to learn to Control that!!!! Seriously ... Just give it time !!! Let the doctors do their job and remember the 2 things from above ... Take care and you can talk with me at anytime Beverly L.

Mary,

Go with your gut! You're not crazy or alone. People who don't experience all these symptoms like us don't have a clue about what we all go through.

Listen, I'm 56 now and I'm finally heading down the road to being the person I used to be. My rhuemy listened to me for four years and finally started me on Orencia for the extreme fatigue, it's unbelievable how it turned my life around these past few months. I take the prednisone, plaquenil, and Orencia.

My daughters been having symptoms lately, just like I used to so she needs to go to a rheumy, actually they're the only ones who understand. My medical doctor thought I was crazy, they all do if they don't know much about a disease.

You're not crazy!

Hi there SweetShortie2012, i really feel for you, it must be so hard for you at the moment, i have been referred to as a hypochondriac when i was with a previous doctor before i moved home and got the diagnosis for Lupus. I had this female doctor who examined me and said oh well if you are THAT BAD!! i will have to send you to see a neurologist, when i got to the neurologist she let me see the doctors letter to her, and in it, it said that because i was suffering from Post Traumatic Stress Disorder, that every physical symptom had to be psychosomatic, in other words they werent really there, they put everything down to the fact i was depressed at the time, and had been through an awful lot and was having therapy for past events. When i moved i had a tempreture of 103degrees and a really sore throat and fluey symptoms, so i rang the doctors, but they told me as i had moved i wasnt in their catchment area so i wasnt entitled to a home visit, and had to get to the surgery no matter what, so i did but when i arrived the lady behind the counter, said i shouldnt of come out as i was so bad, i told her well you said i had to come. Anyway i knew then i had to change my doctors, so when i went into the next surgery i asked was there someone who had understanding and was sympathetic to their patients, i wanted a woman at first, but the receptionist said the only one who was like i wanted was a man, so i thought i would give him a go and he has been great. I walked in and said i felt like a hypochondriac with the amount of things i have wrong with me, he was great about it and just said to list all that was bothering me, and then said he thought he knew what was wrong, but wouldnt say until the tests came back, after ten days i went back and he said he thought i had Systemic Lupus, and said i had probably had it for a long time before then. Anyway i was seen by specialist after specialist, and they confirmed i had Lupus, Epilepsy, Sjorgrens Syndrome, Antiphospholipid Syndrome, had a stroke, and many other things, it was such a shock after being told there was nothing wrong with me except the depression. I have major organ involvement with the Lupus as well, so if it had of been left any longer, things could of been fatal for me, as it was they didnt think i would last longer than a couple of years, but it has been ten years now since i was diagnosed, so i do know how you are feeling totally. Its not nice to think that people dont believe what you are saying. I too, had a nasty piece of work for a father sadly, and didnt see him for ages, until he got cancer, i went the once and that was it, i felt i had to go and see him the once before he died, but nothing had changed about how i felt about him, if you ever want to chat, and would like to message me, please add me as a friend, as i know how hard things are for you at the moment. And no your personal life shouldnt be anything to do with them, although sometimes how we are feeling mentally can affect how we are physically, although we dont even realise it. I think stress can definately exaccerbate pain, it has been proven if we are more stressed or upset about something it can make our symptoms worse, if they can be any worse, eh,? You are right, you need to get answers, you cant put up with this all the time, you need something to ease the pain otherwise you cant think straight half the time when you are in severe pain. Some doctors are better at listening than others, is there any way you can change who you see at all. I have an oncologist as well, i have to give myself Methotrexate injections rather than the infusions, and having those sort of things can make you feel bad enough, i am assuming it is something similar, if not i would be interested to know and understand why you see the oncologist, it is such a shame that some doctors have this tunnel vision towards some things. You are only young yet, and yet you sound as though you have been through so much, which isnt fair is it? Some people get nothing, others get the lot as far as bad health goes. You need to ask the Rhuematologist what your Esr results were and what they should be for you, as everyone is different, and tell him whats going on with you and the pain, he may be able to prescribe you something. My Rhuematologist gives me an extra steroid injection to calm down some of the inflammation. Ask him to be honest about how you are at the moment, ask him how he see's it and then you can tell him how you see it, if you dont agree, but stay calm when you speak to him, show you are an adult, this helps. I am sure you already do stay calm and act like an adult. There are too many assumptions made by doctors, which needs to be changed, so if we dont ask and say what we need, then their views and ideas on things cant change. You are a special person and you are worth the right treatment, stay strong, i know its difficult when so much is going on in your life, remember you have friends here on LWL, and we are here for you, so take care, look after yourself, good luck with the Rheumatologist, love and hugs Astrid40xoxo

Thanks astrid

you understnad so much, i start at a new rhemy TOMORROW! im so happy i really hope i get a good dr but idk what to really say or ask him

i see an oncologist because i have lumps on my foot like tumors but they don't know what they are. this past wee ive been taking potassium pills and 500 mgs of naproxen in the AM and in a couple of days i was feeling a little better so i was doing stairs. My leg felt like it was on FIRE but i was so so so proud of myself for doing something i know is hard for me. me and mom are kinda puzzled why the potassium and naproxen would make the lumps go away though so for the next 2 weeks i get no meds no potassium no nothing. ive built up such a high tolerance to my meds that its just killing my liver for taking something that isn't helping.

i know stress makes it worse and i try to stay in the best mood possible. actually saturday me and mom got our nails done and the people that work there were like you wouldn't even know something was wrong with her shes always in such a good mood and looks normal.

I try to keep everything hidden from my friends and family and act like im better than i may be put a smile on my face even when the pain and frusteration make me want to cry and coming on here make me feel so much better and i feel so much stronger than i once was