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kimssmiling
09-23-2011, 11:31 PM
Hi everyone. I'm Kim and I am so happy I found this forum tonight. I have SLE. I found out a little over a month ago now. I'm hoping to find some close friends on here. I have a VERY strong family unit that is willing to do all they can to help me deal with this nasty disease.But it would be so nice to make friends with others that have it. So heres to all the good friends I'm about to meet.

tgal
09-24-2011, 12:07 AM
Hi everyone. I'm Kim and I am so happy I found this forum tonight. I have SLE. I found out a little over a month ago now. I'm hoping to find some close friends on here. I have a VERY strong family unit that is willing to do all they can to help me deal with this nasty disease.But it would be so nice to make friends with others that have it. So heres to all the good friends I'm about to meet.

Hi Kim! We are glad you found us too! You are very lucky to have a strong family supporting you. That is a wonderful gift. There are times that we just need to talk to someone that is feeling what we are feeling or understands that the fatigue doesn't mean simply tired etc etc. That is what we are here for. There are so many wonderful people in our WHL family! There will usually be someone who has been there, thought what you are thinking, knows the side effects of the meds you are taking and can give tips on ways to lessen side effect. You will notice that we call ourselves a family and we mean that.

Please make yourself at home. There is wonderful information that can be found in the old threads or feel free to start a topic yourself. I look forward to getting to know you!

debbie-b
09-24-2011, 01:17 PM
Hi Kim,

Welcome to WHL. We are more than just friends, this is our lupus family and now you are part of the family too.
Are you on any meds? What are your symptoms?

Debbie

debstar
09-24-2011, 02:59 PM
Welcome Kim :-)

I am only a new member on here, but can assure you that you will find some wonderful new friends on here.

It is great that your family are there to support you with this obstacle in life and together with the support from WHL you will be able to overcome the many hurdles that Lupus can throw at you.

Debby

running girl
09-24-2011, 04:27 PM
Welcome Kim. You're very lucky to have such a supportive family. I think you will find the WHL family very helpful.

I look forward to getting to know you.
Brenda

prothumos
09-24-2011, 08:19 PM
Hello Kim!

I've only been on the forum for a few days, so welcome from another newbie! I have already learned so much and received so much support ~ I can't begin to tell you how much better I feel! I know that you'll be feeling that way too!

Look forward to talking to you soon,
Robin

kimssmiling
09-24-2011, 10:49 PM
Thank you everyone for the post back. I do already feel so welcomed. More so than at another forum I joined a month ago. Now the answer to Debbie's questions,Yes I am on Plaquenil, Vimovo and Predinsone for the Lupus and a couple others for unrelated lupus conditions. I have yet to see my test results from my rheumy. He told me the numbers didn't really matter that all the test came back with a strong diagnosis of SLE. I'm going back this Monday to sit down and talk to him and tell him that they do matter to me and I have every right to see them and have them each explained to me. All I was told was that 1. all my test were at severe levels all around. I thought what the heck does that mean though?? 2. That it was very important to get me started on the Plaquenil and a higher does of Predi. and 3. I needed to start backing off all the narcotics that my pain management dr has me on because my lungs and kidneys are in bad shape. Now, does this sound right? I really did not feel like I was treated like a person. or am I just over sensitive right now? Thats why I called and told his office I wanted another appt with him next week. He said he didn't need to see me until the end of Nov. I thought that was a long time with all the new meds he put me on. I told the nurse NO he needs to see me sooner than that because I had a long list of questions for him.
I'm sorry this is such a long reply. Now on to my symptoms....I'm very sensitive to the sun. I brake-out in bright red splotches and my skin burns and itches beyond belief. I have really bad headaches with blurred vision, Such pain all over my body there are days I can't get out of bed or walk. I'm tired no matter what I do, but again I can't sleep more than 3 hrs a night and almost never can get a nap in. I have a really hard time breathing most of the time. My feet and toes turn almost a deep purple if I'm on them very long at a time. I feel like I have the flu all the dang time, run fevers and then my skin is very cold. I fall and run into things a bunch. AND the newest to my long line of symptoms is I started having seizures a week ago. The rheumy wanted an MRI but because of my electronic device I can not have one, his reply was "Well damn! Don't know what we'll do then because a CT wont show what we need to see." I'm thinking I might be finding a new Rheumy real soon. He said maybe they go away once I'm on these new meds.
Again forgive the book I just replied with.
Kim

steve.b
09-27-2011, 05:23 AM
hi kim, and welcome.
as was said by others,
we want to be more than friends, we want to be family.

i regularly use the term my cyber family.

so welcome sister.........

prothumos
09-27-2011, 12:38 PM
Hey Kim,

Saw your post and wanted to tell you that I also just started with seizures ~ oh joy, something else to deal with, lol. Tgal has been simply awesome helping me with info about seizures, and just learning to live with them in general. I'm off anti-seizure meds now cause my neuro wanted a "clean" EEG (or maybe he's just staging a turf war with my rheumy, who knows?!); the headaches are awful and I literally can't wait to have the EEG and start on Keppra. Never thought I'd say I want to take another medicine but at this point I do. I called my neuro today to beg them to schedule test and am still waiting for the call-back.

Hope you're having a good day, Robin

lacey50
09-29-2011, 02:38 PM
Hi Kim and welcome to our family. I just wanted to add, If this doctor won't take the time to see you and discuss your issues with you, I say start looking for a new rhuemy.

Good luck and hang in there.

kimssmiling
09-30-2011, 02:54 AM
Well, I seen my primary dr on Wed and found out I have pneumonia in both lungs, on top of the pleurisy. Which means more prednisone. He also feels like
we should find another rheumy as well. He was great about all my questions, and answered what ones he could since the rheumy hasn't sent my test results or
reports to him. I tell ya I'm getting pretty tired already of being brushed off by the rheumy and so is my primary. Anyway thank you all for posting back to me.

Kim

tgal
09-30-2011, 09:08 AM
I am sorry about the lung issues but I am glad that you hear that your doctor is working with you. Please keep us updated