Lupus Support Group

Hi, My name is Robin and I was diagnosed almost 21 years ago. Until the last 4 & the likes. 4 years ago I started running a fever of 104 and 4 3 days I laid at home throwing up, not eating or drinking thinking I had a sever case of the flu until my sister became concerned and took me to the hospital. I laid in the hospital sometimes packed in ice for 4 days and they finally told my husband they didn't know what to do I was dying and there was nothing they could do. They decided to do a body scan but before they could run it they had to give me prednisone because of my asthma and they were afraid I would have a reaction. well miracles of all miracles when they gave it to me within an hour I was up and eating and drinking no fever. that was the day I changed doctors, It was my lupus attacking my body and I would have laid there and died because my doctor did not know how to treat it. My new doctor was no better, I went to him 3 months later complaining of bouts of double vision, headaches and diziness. He sent me to the optomotrist and after 6 months of eye tests and vision checks they decided it was optical migraines. 1 month later I left work with a trerrible headache throwing up. I got home and decided to go upstairs where it was quiet and dark. Never getting any sleep the pain was only wortse the next morning so I call the advice nurse who said call 911, unknown to me I was sounding confused on the phone. I called my mother and waited patiently for her to come get me and take me to the emergency room. My attitude was I wasn't going to call 911 for a headache. When the emergency room doctor came and examined me he said they were going to do a cat scan. The diagnosis was not good. My brain was swelling and they had to stop it. I was on IV high doses of steroids and for 3 days they could not stop it and it was getting worse. My only option was chemo. After a routine of chemo for 2 years at different intervals it stopped. I worked when I could during that 2 years, all the time hearing how my husband couldn't support us and I needed to get back on my feet. I worked hard, phyisical therapy every day I could get in. working what ever job I could, answering phones. I went from 45,000 a year to minimum wage jobs. It's been a hard fight, I am back but much more emotional. In a span of 1 year I lost my Mother and Father to Autoimmune cancers, a son whose stomach virus at the same time they were ill is now batteling congestive heart failure and I battle depression every day. I am a survivor but the holidays this year seem harder than usual. I found out the hard way who my friends weren't during this last illness and I need someone to talk to. The support group here in town meets during myu work hours and I can't talk to my husband who doesn't even think I am sick. As a kid I dealt with this mentality but its hard somedays. Sometimes I want to go on top of a mountain and scream I am sick won't someone listen to me. But I go in silence praying at night dealing with the pain and fatigue. Its just gets hard sometimes. Typing out the feelings helps. I keep a journal and write in it when I can, mostly about the stress at work but that helps. I am hoping someone here knows of a better way of coping because I feel my grip slipping sometimes, maybe its because I am getting older and the years have taken its toll.

Hello Robin and welcome to the group. No one believes us lupies are sick because we look OK in the outside but dying in the inside. You could vent, whine or say anything on this forum because we are your fellow lupies, and we understand what you are going through. I hope that you have a good rheumatologist who provides you adequate control of pain & lupus.

Take care.

Marie

Thanks, its nice to have someone who undersatands and also someone I don't have to explain the illness to. That alone can be tiresome.

Robin, welcome to the group. Lupus tears us up from the inside and shows little evidence of it externally. It can be very frustrating because people expect you can do all the normal things like everyone else. You are not alone here though, we understand. You can take out all your frustrations here. I'm sorry this time is proving especially rough for you. I am so sorry to hear that you lost both your parents so recently. You have been through so much. I hope that you have a good doctor you can trust to get you through this time. I hope that you post often and know we are all here to listen whenever you need it.

Take Care,

Amy

Hi Robin-Sorry, you're dealin with this yet again. If it's any comfort...nobody believed me when I "did" look sick...ain't that a hoot-eh? Yeah, no? Well, I didn't think so either. But I finally did get to the right doctors, it took a scary long time but I did get there.

I'm glad you found us. The people here at MDJunction are wonderful. So supportive, and uplifting at the times when we need it the most.

Thanks for sharing your story. You are SO right about others not understanding. But, most of the time, most of us- well, we look fine. Heck! Even I sometimes look in the mirror and say to myself- is there really anything wrong with you? Or is it all in your head?

Hang in there! And remember what a fighter you are!

Hi and welcome to the group. The people are very caring. We all understand how you are feeling right now. Have you found a doctor you like? One who is helping you? You can try to get your hubby to an appointment with you. That might help. I have been diagnosed for 30years, only get really bad the last 8 years. I do have heart and kidney involvement. Having lupus can suck, but we will always be here when you need to vent, or need a shoulder to cry on.

Alison

Hi Robin....thank you so much for sharing your story with us....you have been through the wringer. I truly understand about friends because when I got sick my very best friends didn't understand and even made fun of me so needless to say she and I only talk every once in a while and I never discuss my illness with her. This site is so wonderful we all understand what its like to live with a chronic illness and anytime you need to come and vent, share whatever someone will always be on or you can PM us anytime. Best wishes to you and of course I will be sending prayers your way.

Eva

Hi Robin,

You have been through so much~It isn't any wonder that you are depressed. Just dealing with being sick with lupus can make you very depressed but, losing both parents and everything else you have been through is certainly not easy and only making things worse. You have my deepest sympathy for the loss of your parents.

As far as lupus goes, it seems it is a never ending battle, but please know that we are always here for you. We understand what you are going through and want to support you in any way we can. Just belonging to this support group has helped me immensely. I don't know where I would be without all of these wonderful people.

Maybe you could have your husband come on line here and learn a little about lupus any anyone else you think should learn more about what you go through.

I've gotten to the point (finally) after many years, that I do only what I know I can do without paying big time for it and if someone doesn't like it, oh well. They need to look into lupus so they don't look so ignorant in the eyes of those who do understand it. I'm tired of trying to do what I can't and then pay for it for a long time, just so I can act "normal". It is mroe important for us to take care of ourselves. I hope you learn that sooner than I did.

Again, welcome to our support group. If you would like to, you can PM me anytime. I would like to help in anyway I can.

Hugs~

Christine

Wow Christine, you really have a great handle on dealing with the Lupus. I'm going to work towards taking on that kind of attitude. Thank you for sharing.

Amy