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red246
03-15-2009, 01:26 PM
Hello. My name is Lauren. I have yet to be "officially" diagnosed with Lupus by my rheumy. For now it's "something autoimmune" and paperwork states "connective tissue disease". I'm looking for a new rheumy as I'm not happy with her and her laid back attitude. Everyone else, all the other specialists that I've seen over the last 6mos or so, say Lupus, but she hasn't.
I'm a stay at home mom. I homeschool my youngest 2, have one in college and another getting ready graduate high school. I've been married to my best friend going on 8 yrs now.
That's about it! Hope to get to know everyone!

sick n tired
03-15-2009, 01:44 PM
Hey Lauren,

It sounds like we have some things in common. I homeschooled 8 of my children for 15 years. Now the youngest are in school...I burned out 5 years ago and put all in school. I have one in 7th grade, 2 in 10th grade and 1 who is a senior...(those are the only minors here) How old are your 2 youngest?

I was diagnosed with connective tissue disease for a while then told Lupus then connective tissue now Lupus.
Six months ago I was told it was mild( because of no organ involvement) 3 months ago my heart was attacked...an the beat goes on....

What are your symptoms? My rheumy has a real laid back attitude, almost too laid back at times. I have had to get to know him to understand where he is coming from. For instance, he couches his 'orders' like a request. He said last year, "you might want to start taking calcium and a multi vitamin" Well I didn't start those and when I went back to see him he wanted to take a blood test for my calcium and was visibly upset that I didn't do his orders...what orders? All in all, I still have confidence in him.
I hope that you find a good rheumotologist that you can trust.
Have a great day...
Karen

red246
03-15-2009, 01:58 PM
Karen,
Okay, you said "8 of your children"? How many do you have? or did you mean "all 8"? The boys are 13 and almost 11. This is our first year of full homeschooling. The youngest I have hsed 2x before due to health reasons. We decided as bad as the schools were getting to do it fulltime. Trust me, there are days that I wish they were in school! :laugh:

Symptoms: weakness, achy, pain, shortness of breath, chest pain, FATIGUE, BRAIN FOG, levido reticulitis, that's all i can think of at the moment - see BRAIN FOG!!! :wacko:

At first I liked my doc. She really spent alot of time with me first appt. But as time has gone on and the first major flare is over, she just seems kinda like "you don't have any major organ involvement and I don't have 4/11 of the "criteria" so there's really nothing we can do other than Advil. That's not word for word, but that's the gist of it. Although, I do think I'm getting the malar rash & that would be definitively 4 things - but that's another story! And my fingers are getting tired of typing. :cute:

rob
03-15-2009, 02:24 PM
Hi Lauren,

Welcome to our group! Your situation is a familiar one. A Rheumo who acts like they could care less, and is doing nothing to help in finding a proper diagnosis. Don't be afraid to fire the Rheumo, and find another. There seems to be a serious lack of decent ones worldwide. Trust your instincts. You think something is wrong, you should trust that. many of us knew things were not right, but were told over and over it's all in our head. Be persistent, and be your own advocate. If you offend a few health care "professionals" along the way, so be it. I also moonlight as a Moderator here, so if you ever have any questions about the various features of the site, and how to use them, don't hesitate to ask. We're a pretty laid back group, and I think you'll like it here. Make yourself at home!

Rob

sick n tired
03-15-2009, 02:51 PM
My hubby and I had 8 kids, who are living(we lost some, too) I homeschooled all the 8...about 5 years ago we took in two others...they are brother and sister and two years ago we adopted them...(they were 11, and 13 when we took them in.) I have never homeschooled them, although the youngest, Rebecca wants me to do that this year. Homeschooling in Texas is pretty good. If I do homeschool he 10th graders, I will probably do online umbrella school...liberty university has a school and now an online one that is accredited.
So you are saying your rheumy hasn't even put you on plaquenil?
My rheumy was great when I first met him, but as the symptoms were considred mild..(I didn't consider them mild. but my kidneys and other organs weren't acting up at that time) he only put me on plaquenil and a short pack of plaquenil.
I didn't have the malor rash, either...but did meet 4 of the criteria...even though at first he said connective tissue disease and/or lupus-like, too. The bloodwork came back and later he called it lupus...after 6 months on the plaquenil I was starting to feel much better, more energy, etc...he called it mild and possible just connective tissue,,,when my heart became involved a different story. I did notice the difference in him when I came in flaring...in the past I chose to stay in bed because I didn't feel like dealing with a doctor.
Oh..the malor rash started showing up big time when I was in the worst of this flare.

Angel Oliver
03-15-2009, 04:23 PM
Hi,

Just to say hello and welcome:cute:.

love
Angel.xxxxx

red246
03-15-2009, 05:32 PM
Thank you Rob & Angel for the welcome & the info!

Karen - She did put me on Plaq, but I had an allergic reaction to it before I ever got the chance to see if it was going to work. Where are you at in Texas? We used to live there. Pretty much grew up in Plano. We still have family & "outlaws" there. :cute:

mountaindreamer
03-15-2009, 05:43 PM
hi lauren,\

welcome to the group. I am glad that you have already found someone with a lot of similarities.

my thoughts on your dr....have you thought about having a conversation with her telling your concerns about the type of care you are getting. I ask because you say she is "laid back" which might mean that she is open to a true talk about how she approaches treatment,. and how you want the efforts to go. You might be able to work through things, and move on. I say this because she already knows you and your case, so if she is decent (and there are too many who aren't decent) then you would be one step ahead toward getting treatment. This might not work, just another perspective.

good luck, and thanks for joinging....i look forward to chatting with you.

tasha
03-15-2009, 06:14 PM
hi lauren and welcome :)

here is my 2 cents on your rheumatologist situation: FIND A NEW ONE! in the beginning/diagnostic stages, especially, you need an aggressive doctor (one that is on top of things). there is no excuse for laid back! statiscially, lupus patients who receive aggressive care in the beginning fair much better later on in life than those who do not.

you need to find a doctor who tells you to take 1200mg of calcium every day instead of one who says "it's probably a good idea to take some calcium..."

best of luck to you!

red246
03-15-2009, 06:29 PM
Phyllis,
I have tried talking to her. For example, I asked if there was anything that would help with the pain - nothing I have tried helps. Okay, that's not true - a percocet dulls it, but that's it. I told her this, she had nothing to offer. It's as if I don't have any organ involvement so therefore I don't get any treatment. I mean is that the way this is supposed to work? She even told me that since the plaq didn't work, there wasn't really anything else to do because i wasn't sick enough for the other meds. Not saying i want to have organ involvemnt, but there has to be somehting to do.

Sorry dont mean to rant off on you - just frustrated by the situation!

AyahsClan
03-15-2009, 06:33 PM
Hi Lauren!

Glad you found this forum. So many of us have a lot in common. I don't know why the doctors have such a hard time stating the obvious. It seems that they could use the simple duck analogy (walks like a talks like a). I agree with Rob. Sometimes we need second, third or fourth opinions.

Grime
03-15-2009, 06:44 PM
Welcome Lauren,
I'm new here and new with Lupus so not much help on the advice other than get a new doctor.

Homeschooling is great we did it for one year with our son. Lisa and Ty even finished all the books. That's something that never happens in regular school. The next year he was in a country school that only had 13 kids in K thru 8. Great school.

sick n tired
03-15-2009, 08:15 PM
Hey Lauren,

I live in Tarrant county...around Grapevine Lake if you know where that is...I used to live in Dallas county in Irving, though. My rheumy is at Presbytrian Hospital of Dallas...not the one in plano.

tasha
03-15-2009, 10:53 PM
Phyllis,
I have tried talking to her. For example, I asked if there was anything that would help with the pain - nothing I have tried helps. Okay, that's not true - a percocet dulls it, but that's it. I told her this, she had nothing to offer. It's as if I don't have any organ involvement so therefore I don't get any treatment. I mean is that the way this is supposed to work? She even told me that since the plaq didn't work, there wasn't really anything else to do because i wasn't sick enough for the other meds. Not saying i want to have organ involvemnt, but there has to be somehting to do.

Sorry dont mean to rant off on you - just frustrated by the situation!

hmmmm... definitely get a second opinion. you're right, you definitely shouldn't need organ involvement to get rid of that pain. you obviously have some inflammation or there wouldn't be any pain! she didn't even prescribe prednisone?

Faith
03-16-2009, 12:06 AM
Hi Lauren and welcoe to the family.

I am shocked and dismayed. Fire your rheumy and find another one. Plaquenil works; it just takes 4-6 months to build up in your system. This is the minimum of what you should be on with Lupus. I

am sure you already know to wear a hat and stay fully covered from head to toe or wear uv clothes from coolibar. You may not have organ involvement but if the Lupus is not controlled; you may well have organ involvement. Fire her. Get another Rheumy even if you have to go to a larger city with more specialists.

You need to be proactive because no one else, doctors included, are going to be. Demand answers!!

Keep us updated,

Faith

Faith
03-16-2009, 12:07 AM
Please excuse my typos and formatting; I currently have brain fog. My fingers have a mind of their own.

Faith

Grime
03-16-2009, 04:56 AM
There are many places to purchase UV clothing. They don't come cheap. You can get Rite UV stuff that you treat your cloths with. This is a cheaper way to go at first. You should be able to find it at any store that sells Rite Dyes.

red246
03-16-2009, 06:02 AM
I hadn't really thought about the sun protection too much yet. The only problem I had this past summer - when everything really started up - was getting tired too quickly if out in the sun, no rashes that I remember. I have heard of the stuff to protect the clothes, my step mom has skin cancer and she washes her clothes with something.

Don't worry about the fingers, mine do the same thing all the time. I'm just too anal and constantly go back and fix it unless I'm too tired! :laugh:

I know exactly where Grapevine Lake is. And my oldest was born in Presbyterian in Dallas! That was before Plano had a really good NICU - for premies - and we had to be transferred down Central while it was under construction, that was a ride I will never forget. "Contraction, pot hole, contraction, pot hole....." :hissyfit:

Ayah - QUACK, QUACK!!!:laugh:

Grime
03-16-2009, 06:20 AM
Lauren,
I would worry about the UVA/UVB as it does effect us. I never worried about the sun as I stayed covered up for years working on ranches. Then when we moved to the Texas coast and last summer I was going in short and no shirt to all of a sudden started getting this rash. It started on my left shoulder then down the arm and hand then down the right arm/hand to my face then my head and chest and back. Inside my ears. Try and scratch that part. It itched like crazy. It took me from July to Feb to get an appointment with the dermatoligist. Thats when I found out I had Lupus.

If you don't cover up please use a good SPF sunscreen. I would hate to hear that you got the rash that I have. It's still not cleared up but getting that way. Very slow in healing.

sick n tired
03-16-2009, 10:11 AM
I live in Tarrant county close to Arlington. I also had a premie in presby or dallas...years ago when another had a thyroid problem I used to have to travel to the presby in Plano to see his ped indocrinologist...I was glad when he moved to childrens med in Dallas.

I agree with the others...find another opinion....I agree with Ayah...personally I think that should be a class in med school.

mountaindreamer
03-16-2009, 03:52 PM
hi lauren,

it is so frustrating. here you have something going on, the dr. is the specialist, but they just don't show any compassion....you deserve better. definitely try to find a dr. that attacks your illness with the determination to find you some relief. so sorry that you have to deal with a bad dr.

earlier, i guess i was just loooking for the easiest answer. i hope you can find someone who is good to you.