Re: Newbie Kim!

[Guest guest]

Welcome Kim...I was 21 was I was first diagnosed with SLE (a single,

divorced mother with a 1 yr. old son). My mother kept calling

me " lazy " , unfit mother, hypochondriac, it's all in your head, etc.

Then the rest of the family got into the name calling and judgments.

I am now 36, my mother now has Lupus (with liver involvement now),

Central Nervous System involvement (seizures), Fibromyalgia, asthma,

and such...so, Lupus is NOT a death sentence. If you can find a Lupus

group, in your town (usually at a hospital), to talk to people face

to face. I read EVERYTHING I could get my hands on. You are NOT

crazy. It's not all in your mind. And another great line Lupies

ALWAYS hear is " But you LOOK healthy. " You are lucky to have found a

Lupus group online to get you started. I wish I had this when I was

diagnosed. If you need ANYTHING...or just need to talk please make

your voice be heard (Lupus does mess up our psychic abilities

too...LOL).

Blessings,

> Hi,My name is Kim, Im 27 and live in Ohio, I just found the Lupies

group and thought it might be a good thing to hear from others that

have Lupus. I dont know a whole lot about it. I was just diagnosed 6

months ago and had never even heard of it. I had the rash and really

terrible joint pain, I couldnt move my shoulder, then my knee then my

wrist, I thought I was crazy! I was already dealing with

hypothyroidism (since I was 3) so I have to take synthroid every day

(and I still forget) I had back surgery when I was 13 so I have lower

back pain from time to time, and then this lupus diagnosis, I have

never broken a bone, rarely ever sick, but then I have all these

other weird things happen to me! Back surgery, hypothyroidism,

lupus....I really felt like a hypochondriac! And Im only 27! Most of

the time I feel great, but I wanted to join the group for the not so

good times, I was in alot of pain around the time they figured out

what it was, but everyone around me thought I was nuts, or making it

up because the symptoms were so out of the ordinary for someone my

age. I was wondering if being on the synthroid for so long could have

triggered the lupus, or what the two have in common, and can they

affect each other? My doctor said that when I had my flare with lupus

it sent my synthroid dosage out of whack, he said it was to a point

that I could have put myself in a coma, all I knew is that I was

really tired! I just dont understand how they affect each other, and

the doctor was very vague. Does anyone else have both and know?

[Guest guest]

Thanks! I feel welcome already! Everyone has such an interesting

story to tell!

> > Hi,My name is Kim, Im 27 and live in Ohio, I just found the

Lupies

> group and thought it might be a good thing to hear from others that

> have Lupus. I dont know a whole lot about it. I was just diagnosed

6

> months ago and had never even heard of it. I had the rash and

really

> terrible joint pain, I couldnt move my shoulder, then my knee then

my

> wrist, I thought I was crazy! I was already dealing with

> hypothyroidism (since I was 3) so I have to take synthroid every

day

> (and I still forget) I had back surgery when I was 13 so I have

lower

> back pain from time to time, and then this lupus diagnosis, I have

> never broken a bone, rarely ever sick, but then I have all these

> other weird things happen to me! Back surgery, hypothyroidism,

> lupus....I really felt like a hypochondriac! And Im only 27! Most

of

> the time I feel great, but I wanted to join the group for the not

so

> good times, I was in alot of pain around the time they figured out

> what it was, but everyone around me thought I was nuts, or making

it

> up because the symptoms were so out of the ordinary for someone my

> age. I was wondering if being on the synthroid for so long could

have

> triggered the lupus, or what the two have in common, and can they

> affect each other? My doctor said that when I had my flare with

lupus

> it sent my synthroid dosage out of whack, he said it was to a point

> that I could have put myself in a coma, all I knew is that I was

> really tired! I just dont understand how they affect each other,

and

> the doctor was very vague. Does anyone else have both and know?

[Guest guest]

Hi Kim, I no longer own a thyroid. I developed tumors several years ago (benign, thank goodness) and ended up needing to have my thyroid removed. Within the thyroid we are supposed to have 4 parathyroid glands, 2 glands in each lobe of the thyroid. I say, "supposed to" because the parathyroid glands have been known to show up where they don't belong. Anyway, the surgeon excised the parathyroid glands away from the thyroid and left all 4 in my throat. Then a few years later I developed benign tumors in my parathyroid glands. I had 3 1/2 of my parathyroid glands removed. I not only have to watch my thyroid levels, but also my calcium because of the parathyroid problem. These along with the pituitary gland, adrenal glands, ovaries, etc., make up the endocrine system. I don't know the reason why, nor do I know if anyone really knows why those of us with Lupus frequently have endocrine disorders of one kind or another, which would also include diabetes. I would suggest you go to Web MD and see what you can find and also try the library. You will find the also has information on her site that you will find of interest.

Kim - - when you go to see a doctor, that doctor becomes your employee. If people like you don't go to see that doctor then the mortgage doesn't get paid and the doctor starves to death, right?? So - doctors are our employees. It is a big NO NO for an employee to be vague with their employer. There is what's called the Patient's Bill of Rights and it is actually a legal document that states we have the right to KNOW what is wrong with us as soon as diagnosis is made and that doctors are under obligation to do their best to help us understand what the diagnosis means. Say, I don't understand, or would you please explain that again - - until you get your answers. Maybe the waiting room is full - OH WELL!! Sometimes when I go to the doctor I wait 5 minutes and sometimes I wait 45 minutes - it all comes out even. One of the hardest things for us to do when we get a diagnosis out of the blue - you said, "I was just diagnosed 6 months ago and had never even heard of it" is be assertive with our doctor(s).

I suggest you start a medical journal - daily symptoms, medications you have taken etc. and then prior to seeing the doctor write your questions down and take your journal with you. Believe me it will help you so much and your doctor will know you mean business.

Do you see an endocrinologist? If not, you need to and you need to see a rheumatologist. I hope that you already have and if not that you can. Also, when you get a referral to a different doctor it always always helps if you make sure that new doctor has a copy of your medical record before you have your appointment.

You have found a great group to join. Lots of love and support here Kim. You can't be Newbie Kim for long though. We have a Kimi - I would appreciate it if you would tag your name with something we will all recognize.... a last or middle initial, anything so we will know for sure you are Kim and not Kimi

Good luck hon and PLEASE keep us posted on how you are doing. Feel free to jump in the middle of any group conversation you desire. Wonderful having you with us.

Hugs - a (one of the moderators)

Newbie Kim!

Hi,My name is Kim, Im 27 and live in Ohio, I just found the Lupies group and thought it might be a good thing to hear from others that have Lupus. I dont know a whole lot about it. I was just diagnosed 6 months ago and had never even heard of it. I had the rash and really terrible joint pain, I couldnt move my shoulder, then my knee then my wrist, I thought I was crazy! I was already dealing with hypothyroidism (since I was 3) so I have to take synthroid every day (and I still forget) I had back surgery when I was 13 so I have lower back pain from time to time, and then this lupus diagnosis, I have never broken a bone, rarely ever sick, but then I have all these other weird things happen to me! Back surgery, hypothyroidism, lupus....I really felt like a hypochondriac! And Im only 27! Most of the time I feel great, but I wanted to join the group for the not so good times, I was in alot of pain around the time they figured out what it was, but everyone around me thought I was nuts, or making it up because the symptoms were so out of the ordinary for someone my age. I was wondering if being on the synthroid for so long could have triggered the lupus, or what the two have in common, and can they affect each other? My doctor said that when I had my flare with lupus it sent my synthroid dosage out of whack, he said it was to a point that I could have put myself in a coma, all I knew is that I was really tired! I just dont understand how they affect each other, and the doctor was very vague. Does anyone else have both and know?"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies