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Life With Lupus

Newbie - Recently Diagnosed


#1

Hi y’all - For the last ten years, I have been to doctors and to the ER and repeatedly been told that there is nothing wrong with me. I had come to question my sanity. I have cried more tears that imaginable not over the pain (which at times could have caused tears), but rather over never being believed. I have had doctors and nurses accuse me of being a drug addict looking for pain meds, a hypochondriac or faking. Because I mean who doesn’t want to spend five or six hours in a hospital ER and pay a couple hundred dollars, right? Finally, I had the worst flare yet. Again the ER doctor said nothing was wrong with me, but my new PCP ran tests and four different Lupus indicating tests came back as positive or indicative of Lupus. It sounds crazy to be happy, but there is a relief in knowing that I am not crazy. There is something wrong with my body. I haven’t been to a Rheumatologist yet. I can’t get an appointment until October so I am not on any meds. I am battling fatigue mostly and joint pain in my hands, knees, and feet. Oh! And tinnitus - that’s new since the flare and constant. Of course, there is kidney pain which leads to shortness of breath and heart pain. You all know the story too well. I have always been a glass half full person that sucks it up and puts a smile on my face. I am struggling now because there are times when I can’t suck it up. I am too tired or in too much pain in too many different places. I wonder how to explain this to family and friends. I wonder if I will get worse. I wonder what will happen if I can’t work. I wonder if my granddaughter will only know “sick grandma”. I wonder how long I can stay strong. And every night before I go I go to sleep I wonder what will tomorrow be like? Thanks for listening…as you can tell I’m a Southern gal and not shy. :slight_smile:


#2

If I was you I would look around for a rheumatologist that can see you before then. We here know what your going and the only other person that will completely understand you would be the rheumatologist without being on any Meds are hard the longer you wait to a specialist the more damage your doing to your body


#3

You need to stop going to the ER over this and get into managed treatment with a rheumy or lyme disease specialist. The ER isn’t going to help you at all and is going to cost you way too much money!

Be sure you take copies of your positive test results with you to the rheumy and do try to get in somewhere sooner than October, that’s a long way away and you’ve been through too much for too long! Your PCP may be able to get you in faster, ask the office to call and make an appointment for you b/c they consider you to be in need of critical care that’s beyond them.

azurelle


#4

And a better way for your friends and family to really understand take them to appointments with you


#5

Hey Tracynb,
It is not crazy at all to be pleased with having a diagnosis. For those of us with rare conditions it is really common to be misdiagnosed, unfortunately. So to given an actual diagnosis can be such a relief. For many years I too was told that my condition was a mental health issue as they could not find anything. In short, I was ostracized as it was all labelled hypochondria and that label followed me to every dr’s appointment. It wasn’t until many years later that I had a major medical incident that my situation was reinvestigated and a true diagnosis was given. I was annoyed, pleased, angry and happy all at the same time. I REALLY wanted to return to all of those dr’s and punch each and everyone of them in the end of the nose. They have no idea of the impact their judgements have had. I often wonder just how different things would have been had they properly investigated in the first place.

So, no, it’s not crazy, not crazy at all

Merl from the Moderator Support Team


#6

So happy for you to finally get your diagnosis. Your story is nearly identical to mine and I’m sure to many others here on this forum. I got so frustrated with the awful treatment and accusations I was getting from doctors prior to my diagnosis, that I actually went 25 years without seeking help and hiding my health issues from doctors and family. So I’ve lived most of my life without treatment, until now at the age of 58. Thankfully, you’re getting answers relatively quickly for an autoimmune disease (even though I’m sure it doesn’t feel quickly) Don’t let others scare you though. A couple of months until you see a Rheumatologist isn’t going to break your body. Good luck to you, and I hope you get all the help you need from the specialist.


#7

EXCUSE CAPS: MY HANDS HURT!! NO ONE KNOWS YOUR BODY BETTER THAN YOU. IF EACH PERSON WITH LUPUS REALIZES THAT “THEY KNOW THEIR BODY BETTER THAN ANYONE ELSE” THAN THEY CAN HELP THE DOCTOR TO WHAT IS NEEDED. GET PAST TO THE OF A FLARE!! IF A PERSON KNOWS THEIR BODY, THAN EXPLAINING THE PROBLEMS WILL HELP THE DOCTOR WITH A PLAN FOR TREATMENT.
I WISH WE ALL WOULD GET WELL, QUICK. SUFFERING IS NO WAY TO LIVE. I THINK MORE OF THE PEOPLE WITH SLE AKA SYSTEMIC LUPUS, CAN EXPLAIN TO THE DOCTOR ABOUT EACH EPISODE OR FLARE UP AND KEEP A JOURNAL OF WHAT IS GOING ON AT THE TIME. THIS MIGHT HELP TO KEEP TRACK OF THE EFFECTS THEY ARE EXPERIENCING!! MAY WE FIND A CURE SOON. 6 MILLION DOLLARS WAS RAISED AND DONATED FOR RESEARCH OF AIDS. ONE DOCTOR TOLD ME"IF THEY FIND THE CURE FOR AIDS, LUPUS WILL BE CURED ALSO"!! WE JUST HAVE TO KEEP THE FAITH AND THIS CHAT ROOM IS THE FIRST TO HELP IN KEEPING A DAY TO DAY JOURNAL AND HAND IT IN TO THE DOCTOR. WE NEED THE MODSUPPORT AND I MYSELF AM THANKFUL FOR THEM!! THANK YOU FOR HELPING EVERYONE THAT PASSES THRU AND ANSWERING THE QUESTIONS OF HOW WHAT TO DO IN THE TIME
OF A FLARE UP!! .mm


#8

It take fewer keystrokes NOT to use all caps and continue to offend folks. (Two exclamation marks ending the first sentence required using your shift key.)We have asked too many times.

TJ


#9

(Michele_McNeill’s post has been blurred because it is written in ALL CAPS.)

Michele, you have been asked time and time again to refrain from posting in all caps. In doing so, you are deliberately making reading more difficult for your fellow members. In a social context, you are SHOUTING. If you doubt this, please read this.

Your hands hurt? Many peoples’ hands hurt, including mine. So we get that. But your fellow members have eyes that hurt, brains that hurt, and feelings that hurt. Please show some respect.

if touching the shift key with your pinky is too painful, then keyboarding with no caps is perhaps your solution. the result is far more comfortable to read than all caps, and at least it is polite and respectful towards your fellow members.

Thank you for taking this onboard, and for avoiding all caps in future.