View Full Version : I am new here looking for answers

07-06-2009, 10:44 AM
Hello my name is Lea. I am married to a wonderful man named Allen for over 11 years. I have 2 beautiful grown children from a previous marrige and I have 2 children that went to heaven. I have not been dignosed with lupus yet but I am looking for some support and help. many years ago I started having a lot of medical problems. first off it was eating problems and then it went from there to other problems. I spent many years going to doctors who would give me medication and tell me I would be better in a few days not to worrie. My husband was very concered and would always help and find me another doctor to go to and he would attend all my medical appointments and help understand what was wrong with me. one of our major problems was no medical insurance so it was hard to get a good doctor. But after many years my husband go a new job with health insurance and we found a wonderful doctor that both my husband and myself were happy with. We were finally getting some answers. I was dignosed with IBS to start with. Then I was dignosed with Anemia the anemia was so bad that I would have sezier like problems from it. My blood platelet level was about gone, but thats not the worset of it. I then developed Raynaud's Phenomenon which was very hard to deal with. I have times when I turn completely blue (at work they use to call me the Smuf) I eventualy learned how to deal with it after much studing of what it was, but by the time that had developed I had so much joint pain I couldn't walk and doing everyday things was unbearable. I had to keep going on fmla at work and eventualy lost my job, but the kicker was my husband lost his job as well. Last year I went to the doctor because I was having so much joint pain and was swelling up from it I was set to go to a reumotoligst but our insurance was dropped cause husband lost job. The ruemotoligst wanted 300.00 up front. We had just bought our first house and could not afford that with us losing our jobs. Since I lost my job due to my health problems I decided to apply for disability. I have been putting put alot of money just to keep me at the doctor. In Feb I was dignosed with diabetes. I spent the whole month of Feb sick and in bed and at the hospital also that month having a uti, kidney infection and yeast infection and a inner ear infection. The doctor who is wonderful agreed I try for disability, and still trying to help get me to a reumotoligst. once I applied the disablitly office sent me to a orthopedic doctor. my regular doctor that I had RA. 3 weeks ago I went to the appointment for the orthopedic doctor. Who now insist that I see the reumotoligist his thinging is either RA or lupus. I am scared and don't know what to think about all this. I am having sever headaches and my ear problems are getting worse. I have had to reajust my life so I can do everyday task such as getting out of bed and a bath tub has become difficult for me. I can even drive a car as if I do I will spend days just getting over a simple drive to the store. My whole right side does not want to work any more and stays swelled up and the joints hurt. My husband has been wonderful in helping me but he has to work. I have been reading up on lupus and right now I am waiting on some test to come back that will hopefully give us some answers. But my main issue is I don't know if I can deal with all this. I am trying to stay focused and not get up set about it but it is very hard.
Just looking for someone to talk to that can understand what I am dealing with.... Thanks for listening

07-06-2009, 04:00 PM
hi lea,

welcome to our world-wide family. you will find an abundance of knowledge and compassion among our memers. Please find peace in the fact that we are here, and no one will ever turn their back on you.

You have been through so much the past few years. I hope your disability gets approved very quickly, and that you can go to the dr. whenever you need to.

Yes, lupus is extremely scary....all of us have gone through the realization that our lives have changed, our normal routines are no longer, and that we must find new ways to live our lives each day. Even though you are not alone, i know that you are justifiably very frightened. We are here, and will walk each step with you.

To prepare for your dr. appt., i recommend that you think back through time, and make a list of all symptoms that you have ever had. Even if the symptoms are not presently active, write them down. This will help the dr. narrow down what might be going on with you.

Hopefully, once you see the rheumy, he/she will start you on Plaquenil. This is the standard lupus medication, and lots of people get significant relief from it. However, it can take up to 5 or 6 months for it to work, so if you start, don't give up and quit. Also, often plaquenil causes some stomach issues in the beginning. But, they usually subside after a few weeks.

There are other options including steroids and immune suppressent medications. Many of us are on one or both of these, and we can help you ease the worries about taking these medications.

Your husband sounds like a true dear, and i am so glad that you have him on your side.

Good luck, let us know how your appointment goes tomorrow.

07-06-2009, 04:27 PM
I am sorry to hear about how hard things have been for you. I also have IBS and diabetes and am waiting a formal PsA, RA or Lupus diagnosis. I had a 2.5month flare recently that got so bad that I couldn't drive either and ended up in the ER. This past month alone, I spent $400 (with insurance) on doctor visits and perscription fills. I can't imagine how you are doing all of this without insurance. You mentioned that you lost your job due to your health issues. Is that the formal reason your employer gave you? I don't know how the law works in SC, but in NY, I am almost certain that would be illegal. Did you employer offer COBRA coverage when they terminated you? If you had health coverage, you might have been eligible for COBRA, which would help with the rheumy. Like mountaingirl said, everyone here is here to help and support you.

07-07-2009, 05:19 AM
Mountaindreamer, I have had to keep a dirary for many years of all my problems due to my eating disorder as I call it. Doctor calls it IBS but I don't agree with them on that matter.When I was working I keep a list of all my medications and emergancy contacts on my desk but my job had issues with that. There has been many times when I would pass out or have seziurs(spelling) like problems and could not speak and wanted to make sure that those that were around me knew what to do, so there is a huge notebook of information on me...
SandyR thanks as far as the job goes it has been a battle since the begenning. I had to obatin a lawyer over the fact that one night at work I passed out and laid on the floor for over 2 hours before the call someone for help, wasn't that they didn't know I was there according to the policies of the job if I couldn't ask for help they would not call any, but a really good friend of mine there found my phone and call my family when my husband was reached he was mad and came through the building like a tornado looking for me. Thats when we got the lawyer. It just became a battle time and time again to work there. Finally when they realized that they could not get me to leave as I saw that was what they were trying to do. They made up a reason to fire me. The lawyers are looking into it. The bad thing of it was my job could not confront me and tell me I was fired they had to do it over the phone. After I got the call I went to work to confront them and they would not allow me in the building to speak to any one. Talk was other employees were told not to speak to me or they would be fired. Like I said not a good place to work.

Angel Oliver
07-07-2009, 05:24 AM
Hello and welcome to the forum.Wow what a tough time you are going through at the moment and so glad you found us.I see you have been given some fab advice off members so far.Just know im thinking of you n when i feel more alive i will catch up with you properly.Keep strong....and we are always here for you.


07-07-2009, 05:37 AM
I can truely understand Amanda, hope you feel better soon look forward to gettting to know you

07-07-2009, 05:47 AM
Hi Leann,

Welcome!! Here, you never have to feel alone there is always someone here to talk to or someone who can listen. Im sorry things have been so tough for you. I hope you get some answers really soon too. Stay strong


Angel Oliver
07-07-2009, 05:48 AM
Thanks so much for understanding.I just did a post ''welcome to all the recent newbies) to say hi properly n let you know about me.I hope you know you will be in my thoughts.
love Amanda.xxxxxxx

07-07-2009, 05:46 PM
wow leann! :shocked: I can't believe what kind of BS they have been putting you through! :no: To think that a company would have a policy were "if I couldn't ask for help they would not call any" is unacceptable in our culture! What if you had had a heartattack or were hit over the head unconscious!?! It just boils my blood to hear how poorly this company treated you. As much as you need the health insurance, I think you are better off not being there. The cost is just too high for you. I hope your lawyer wins your case cause it sure sounds like you have one!

07-09-2009, 07:40 AM
The company was fine when I first got there but after about 2 years it was sold to another company and it went down hill after that. Since I was fired over 80 percent of the people that was working with me have been replaced.

Sometimes I wonder why I stayed as long as I did, I guess because it had been the first job I had in over 17 years, and I did not want to give it up. There were many of days it was just a fight to go to work for these people and to just not be in an arguement.

Hopeful it will work out in the end

07-09-2009, 07:48 AM
hi lea,

i am so glad that you got out of that stressful environment. I am sorry that you went through everything and ultimately lost your job, but you do not deserve to be treated disrespectfully from anyone, especially an employer.

good luck, stay strong.....you will shine, and they will fold.