The Lupus Forum banner
1 - 16 of 16 Posts
Joined
·
7 Posts
Discussion Starter · #1 ·
Hi everyone, I have been reading posts on here for a few months. I have had problems since I was 19 and have been back and forth to so many drs. that I can't even count them. I finally got a referral to a Rheumatologist in another state in June. Just went back for my follow up last week, and she said that I had arthritis and poss mild lupus. I don't have all the positive labs, just a few. But that my body is mimicking lupus without organ involvement and that she is going to treat my symptoms. She started me on 400mg pf plaquaneil, daypro and neurontin. I also have had diabetes since I was 9. I have had joint pains all over since I was 19. The first dr said that i was just getting older and my hips were getting wider. I also have the sun sensitivity and have had faint malar rashes for years. I also get mouth and nose ulcers on and off. And always seem to have extreme fatigue and brain fog. I find it so hard to remember things sometimes, especially at work. I recently had my knees swell so badly that I couldn't even bend them and they were red and had tons of fluid on them. They were like this when I went back to see my dr. last week. I think that helped in getting some help. I have been told for years that it was all in my head or that I was just stressed. It's scary to finally be told that you do have something wrong with you and that its not just in your head, but I am hoping that now I will finally get some relief and be able to do more with my husband and son.

A little more about me besides the dx -
I am 29, will be turning 30 this year. Hoping that 30 will be a better year now that I feel like I am getting somewhere with this.
I am happily married and have an 8 yr old son who loves playing baseball.
We have two puppies and are fixing to add a third one.
I have worked in the medical field doing insurance and billing for 10 yrs and love my job most days.

I am looking forward to getting to know everyone, and learning as much as I can about this disease.
:blush:
Julia Roberts (not the famous one unfortunally)
 

·
Moderator
Joined
·
11,410 Posts
Hi Julia,

Welcome to the site.

Being told you have something wrong causes lots of emotions. One that you are relieved that having a problem has been acknowledged. Two now that you know that there is something wrong and you wish it wasn't true. In a nut shell you are right it is very scary.

It sounds like you have a keeper for a doctor.:)

It will take awhile for your meds to take ahold. It is hard to be patient though.;) We want to feel better fast.

Let us know how you are doing.

Love,
Lyn
 

·
Registered
Joined
·
7,800 Posts
:welcome: Julia

I'm glad to hear that you have finally got somewhere and it is excellent news that you have started treatment. I'm sure you'll go through quite a few emotions concerning diagnosis over the weeks and months to come but deep down it truly is easier to cope with something when it has a name and you feel some action is being taken.

If you have any questions or need support, don't hesitate to ask. This site is full of caring and knowledgeable people.
Here's to a much better year next year :)

Bye for now,
Katharine
 
Joined
·
7 Posts
Discussion Starter · #4 ·
Thank you both for your kind thoughts, its hard trying to talk to friends or family about whats going on because sometimes they really don't get how tired or how much pain we are in. My husband and family try their best to understand, but I know it has to be hard on them too.

I am trying to be patient about the meds kicking in good, but patience isn't one of my virtues. I'm just ready to feel better and not be so tired all the time. I just try to take it day by day and listen to my body.

Again, thank you for the warm welcome and thoughts.
 

·
Registered
Joined
·
270 Posts
Julia; you need to get a full result test of your ANAs, broken down to identify specific autoantibodies. In the UK most of our doctors have long given up on looking for butterfly rashes, warm knees, and a friendly chat. They take gallons of blood out of you and send it off to a lab for countless tests. When was the last time you saw a doctor with a stethoscope? Its all 'Startrek' now. Then, when you have the results, you can begin to get to grips with things.
 

·
Registered
Joined
·
4,968 Posts
Hi Julia and welcome to the site.

The Spoon Theory explains things to family and friends who just don't get it. Maybe you should print it out and make copies to just hand out to people. If I were not so computer stupid I would post a link to it here for you. I am sure someone more computer literate will be along and maybe do that. It is a very interesting read!!!

Glad you found us and sure hope you get on the right track to feeling better.:wink2:
 
Joined
·
7 Posts
Discussion Starter · #7 ·
I googled The Spoon Theory and it was amazing to read. Thank you so much for sharing. I have printed it out for my family and friends to read. I do have good days and bad and I am slowly learning how to judge how much to do or not do. It helps just knowing all of the people that are part of this website are here for support.:)
 

·
Registered
Joined
·
4,968 Posts
Glad you liked The Spoon Theory Julia.

I happen to love it and have one posted on my refrigerator, in the bath room, the bed rooms, oh yes................all over the house. Just in case the men I live with forget, it is a gentle reminder.:lol::lol::lol::lol:

Take good care of yourself and sure hope to chat with you sometime.:wink2:
 
Joined
·
7 Posts
Discussion Starter · #10 ·
Hi Karol- The last few days have been pretty yuck, but I am learning to deal with it and rest when I need to. The weather here is changing and starting to get cold at night and in the early mornings. So I know some of it is that. I'll be glad when the plaquneil kicks in good!!! Hope you had a wonderful and pain free weekend :)
 

·
Registered
Joined
·
4,968 Posts
Yes, our weather is doing the same. Mornings and nights are cooler. Last night it went down to 51 degrees and this morning it was the same when i woke up.

Makes for perfect sleeping weather but we cant stay under the blankets all day.:lol::lol::lol:
 

·
Premium Member
Joined
·
7,567 Posts
Hi Julia, a belated welcome to the site from me!! I have found the site to be so friendly and supportive. I hope your plaq kicks in soon as well!!

Take care

Deb
 
Joined
·
7 Posts
Discussion Starter · #13 ·
Thanks Deb-
It helps so much to read everyones stories and advice, and have such a warm welcome. Everyone on here seems so great. Its hard not to get frustrated about this disease. Thanks again for the warm welcome!!
 

·
Registered
Joined
·
1,101 Posts
Howdy Julia,
When I was diagnosed my wife said I should buy a tee shirt that read
"I TOLD YOU I WAS SICK!"​
We all know what you mean by the shock of an autoimmune Dx and the mixed feelings it brings.
There is great strength in the folks on this forum. It can be a real help, especially on the "down" days.
All the best to you!
Douglas+
 

·
Registered
Joined
·
11 Posts
Hello there

Hi Julia

I have only joined this site in the last couple of days and have found support and relif to be with like minded caring individuals whon have helped. WE ARE NOT ALONE!

Anyways I ahve been married to my hubby Russ for 21 years I have 15yr old daughter and am really happy except of course for the lupus.

I have full blown CNS involvement, and understand all of what you stated in your posts.

I live in the UK in Cornwall and would love to build up a regular e-mail with you to keep in touch and support you and vice versa.

You said you have dogs and are awaiting a new puppy, what sort do you have? i would love a Chocolate Labrador, but am not certain I could cope at the mo as I am receving chemo for the Lupus.

My daughter has just returned to her last compulsory year of school and will take her GCSE exams in may 2010. real scary I feel old.

I live ikn a small market counry town and really have a good nad happy life, i would not change anything (except the lupus). I was working full time for a bank as a Financial Planning Manager, but am currently long term sick.

Please write back I would love to her from you as i can not walk well at hte moment and do not go out much because of this so pen pals help keep me sain so to speak.

Much love to you and your family

Nicky XXX :wink2:
 
1 - 16 of 16 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top