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View Full Version : FEELING LOST IN LUPUS !!



shann
12-21-2005, 12:41 PM
Hi all,

I am in need of some comfort if there is such a thing with Lupus !! I was told I have Lupus in 2002/03 and the doctors so far don't have much time on the books with Lupus.

One of the doctors I saw gave me a med. that made me so very sick as I had such a bad reaction to it. When I told him this he stated it was not from the med. as it did not have the side effects I had. When I infomed him that even on the bottle it listed the side effects I was having, he then stated that I was having a bad reaction and to then stop the meds. Needless to say I left that doctor right away.

The next doctor I went to informed me that in order for me to get help I need to help myself. He told me I need to contact: And he gave me a hospital contact name and a place to request information on Lupus from and then stated he will only help me from that point on if I first do the above to prove to him that I do really want help as he stated he was tired of people coming to him with Lupus and they don't do what he tells them to do. Yes you guessed it, I left that doctor as well.

I am to see another Doctor at Stanford Hospital Dec. 29, 2005 and I am truly praying she will not only truly be knowledgeable in Lupus, but can and want to help me.

I have pain every moment of every day. On a "Flare Up" I can't believe I make it through. The pain is so strong I can barely breathe, it feels as if my back will split in two if I breathe. The way I can say in words what it feels like is: Say there are two people and the first person has a hollow led pipe and is jamming it through my bones and joints, and the other person is lighting my skin on fire. That is just the start of my symptoms. I have a hard time remembering things, I am soooooo tired, just to turn over in bed feels like I ran at least 40 miles, I am so weak, my brain is in a fog, my hair is falling out big time, I bleed big time, my ankels are so swolen, my feet feels like there are rocks at the bottom of them so it hurts to walk. Okay, I will stop there for now, as the list just seems to go on and on and on for me.

I feel so alone in this crazy Lupus. I am so blessed I found this site.

Have any of you gone throught this??

Shann.

TracyDawn
12-21-2005, 01:06 PM
Welcome aborad Shann. I am so sorry you are so sick. I really hope that new dr can and will help you. We all have some of the same symptoms but also have very different ones. I think most of us tho, have been through the dr merry go round and it SUCKS! A lot of drs need to go back and retake that course on bedside manner and the others need to retake a course on Lupus. I have yet to find one that have been trained fully on both.
{{{HUG}}} again welcome aboard and vent all you like here, we understand.

shann
12-21-2005, 02:07 PM
TracyDawn,

You truly have touched my heart! I feel like I can just break down and cry, but if I do I fear I won't stop!

Thank you so much again TracyDawn for your response as it makes me feel like I am not so alone in this.

Shann.

hippimom2
12-21-2005, 03:25 PM
Shann, I'm so sorry you are going through this run around with the doctors. A lot of us, including myself have had to go through several before we get the help we really need. How terrible for you to feel so rotten and not to have any medical help. Has anyone given you anything to start to treat your symptoms and decrease your pain? I really hope you get some help soon. I'm glad you found us. You'll find a lot of support here.

golfgirl
12-21-2005, 04:26 PM
Shann,

I am so sorry you are having such a hard time right now. I changed Dr's three times before I found the right one for me. I reached a point where I thought they all did'nt care, but they are out there.... I hope tomorow is a better day for you, and your pain lessens.

Take Care,

Golfgirl

Riversprite19
12-22-2005, 01:02 PM
HI SHANN...I AM NEW TO THIS BOARD..I JUST RECENTLY FOUND IT. I HAVE HAD SLE FOR OVER 10 YEARS, AND IT DOESN'T SEEM TO BE GETTING ANY BETTER. I AM SO AWARE OF THE PROBLEMS YOU FACE WITH DOCTORS. IT'S AMAZING HOW INEFFECTIVE, UNKNOWLEGABLE AND WORST OF ALL UNCARING A LOT OF DOCTORS CAN BE. I HAVE FOUND THAT IF THEY DON'T HAVE THE MAGIC PILL TO CURE US, THEY WOULD JUST AS SOON WE "GO AWAY". THERE ARE DOCTORS WHO CARE, BUT IT'S HELL TRYING TO FIND ONE. I RECENTLY HAD EXTENSIVE, SINUS SURGERY AT STANFORD, AFTER THE LOCAL SURGEON (AFTER DOING 2 SURGERIES ON ME, SENT ME TO STANFORD) YOU ARE GOING TO A GREAT INSTITUTION, I JUST HOPE THAT THE DOCTOR WILL HELP YOU. AT LEAST YOU CAN FEEL BETTER KNOWING THAT STANFORD IS A TRULY TERRIFIC HOSPITAL...MANY NOTCHES ABOUT MOST LOCAL INSTITUTIONS. HANG IN THERE SHANN...MY PRAYERS ARE WITH YOU....

shanniefly
12-22-2005, 01:24 PM
Hey Shann:

Sorry to here you are having such a time finding a good doctor. I guess that is one thing I am luck for...don't get me wrong, I've had my share of bad ones, but currently I have the best doctors that truly care!!!

That is one reason I would never dream of leaving Nebraska!!! Maybe it is because we are such a small state, but we have great medical facilities, and most of the doctors here have worked in small towns ect. so they are very sympathetic!!!

Just remember that you know what you are feeling better than them, and they are there to help you get over what is bothering you...you pay them for this, and though Cali is big...there are many doctors in the sea!!!

A pray that you will find a wonderful doctor, and some relief from pain this Christmas!!! Best wishes to you!!!

shann
12-22-2005, 02:48 PM
Hello to you all,

I have to say that I am so truly blessed by you all !!! I have never had such true kind support during this storm in my life from anyone until now.

I pray that God bless each and every one of you in a very special way so that you will know how truly special you are to Him. I know He will see each of us through this.

Again, I thank you so very much all of you who have taken the time to respond to me. Thank you just does not seem enough to say, but it is very much from my heart.

Gods blessings.

Shann.

catlady4520
12-22-2005, 10:50 PM
Shann

I know exactly how you feel! Why don't you write to Saysusie. She's the moderator on this board and it's dedicated to her daughter. She's helped so many. I wrote her a post just like yours this morning. I've been in so much pain for so long and finally my hand specialist prescribed Celebrex today for me. I've never taken it (don't know why???) but I had relief for the first time in weeks. I know how hard it is to cope...I've never really been sick and started having seizures in April. Found out by July that I have full blown lupus of the brain and have been on chemo since.

Take one day at a time, try to take warm baths, if you have joint pain in your hands - use a paraffin bath. Do anything that helps you make it through the day. I've only had about 8 hrs of sleep all week so can totally sympathize. Hang in there kid!

hatlady
12-23-2005, 11:28 AM
:) Welcome Shann!

You're already learning what a wonderful group this is, I just needed to add my "hi" to the bunch.

Yes, we all understand - oh lordy we understand! It sounds like you're doing the right things - taking charge, not letting the docs rule you. Keep listening and learning, AND stay here with us - we all listen, learn and lean on each other!

~hugs!