View Full Version : New Here

01-04-2009, 05:57 PM
Hi everyone,

I thought I would introduce myself. I just found this site. What a wonderful one at that it is.

To let you know a little about me:

I am a female 54 yo. I was diagnosed with Lupus in October of 2008. After looking back the last several years I can see there were many signs not I or the doctors picked up on. It was not until I could no longer sit or walk very well that I went to my PA and she ordered blood test, did a complete exam and and confirmed her suspicions to me the next day. I have Acute SLE Lupus. I will be going to the rheumotologist on the 23rd of this month. It has been a long wait to get into her! I am still dealing with a flare up that has been going on since August of last year. It steadily got worse until I could no longer bear the severe pain and could not make it up a stairs let alone walk. I am still in pain mostly my upper arms, hips and legs. I have headaches and dizziness that makes the room feel like it is spinning and can wake me up out of a sound sleep. I get chest pains and now breath funny at times like sighs and can ot catch my breath. My left eye has been twitching for over six months now and my vision gets funny.

I try not to complain and think about the things I am able to do, rather then what I can not. I was a very active person with horses (8 of them), fishing tournaments, traveling, photography, sewing, hiking etc. I just started to learn to play fiddle the last year and now it hurts even to pick up the bow most of the time. Life as I knew it is now gone!

Today, I vacuumed and was able to do some laundry. Yesterday I sewed for while. Some days I sleep a lot and other days are better. Fevers come and go and so does my humor. Some nights I wake up from pain and some nights I can sleep. It is an emotional roller coaster to say the least. I am learning to deal with it, but I must admit it is sometimes becomes very, very difficult. I thought of myself as a pretty tough person. I have survived Meningitis, pneumonia, broken ones, collapsed lungs and surgeries to numerous to mention. Now I feel like I have been beaten down by this.

Most of the family members think this is nothing. Ha! I have news for them. I want to tell them so bad, but they have no ears. Only my one daughter seems to have concern for me. My husband has little knowledge about it and is not computer literate, so getting on the net is not an option for him to learn. We will be going to a Lupus Support Group meeting the 14th. I do print him out material on it from time to time, but I do not want to overwhelm him with my disease. He is now taking care of all the horses and does what I can not do and drives me when I can not drive. He has been very understanding so far. I have one very good friend and her husband). They are my rock and call even though they are 3 hours away. They will be making a special trip to come to see me.

I read some of what you all have written here and can relate to it so much. It is so good to know that you (all of us) are not alone.

Feel sorry for myself? No, I will not allow it. To every door that closes, another door opens. I am keeping my eyes open so hopefully I wil lnot miss it and will stay on the look out to find it. Kinda a hard with funky vision sometimes though. :lol: I can now get up a set of stairs and sitting on the potty is not as painful as it used to be. :crazyeyes: So life is getting better. This I must remember.

The best to all of you
Bonnie in WNY

01-04-2009, 10:03 PM
Welcome Bonnie! I can relate to much of your experiences. I was recently diagnosed after 5 yrs of seeing rhuemy. I was also at the point where I could barely walk. The pain and swelling is pretty much gone now that I'm taking prednisone. I've been tapering it slowly and everytime I do I get a few days of pain. I hope to get off it soon.

I hope your rhuemy appt goes well.

01-05-2009, 12:26 AM
Hi Bonnie! Let me start off by saying I love your attitude. We have to choices when we are diagnosed....you can accept it and go on with your life or you can let it get the best of you. Like you I choose to live and love life just as it is. There is nothing we can do about this.....it is what it is :wink: The best part is that you will find so many people here who will know exactly what you are going through and you will feel a little less lonely from it. It makes such a difference when you can talk to people who understand you because they are going through the exact same thing as you. Most people do not understand and will not understand our special diseaseltherefore, compassion goes right out the door and never looks back :?

Like you, I have a lot of pain in my legs. I also get this terrible swelling in my fingers and sores on my elbows. The fevers come and go. I noticed you mentioned that you have started having some problems with your breathing, well, that happened to me about two years ago. I went to my doctor and it turns out I had developed asthma! I could not believe this but the doctor said it is part of the whole auto-immune issue. Hopefully you can get that checked out when you go into the doctor :)

I also try not to complain. I really don't want to put that on my friends and family but then you are left with dealing with Lupus all by yourself and that is the worst :!: So, I found my new Lupus family here :wink: We all help each other when we are feeling a bit down and we celebrate when one of us has a good day :D You will feel so loved and understood in a matter of minutes! Again, welcome and keep posting and let us know how the doctors appt goes and what his or her plan is for you.......it was nice meeting you and keep your chin up and remember, we do not feel sorry for ourselves:angel:

01-05-2009, 06:41 AM
Hi Bonnie,

Ah, that feeling of finally getting a diagnosis. You don't know whether to laugh (from finally knowing why) or cry (because you definitely aren't thrilled with the why). I think many of us wait with almost a type of excitement to see our rheumie for the first time that no one understands.

The thing that prompted me to respond to your post is the mention of your family and about how they just "don't get it". Oh, girlfriend, I hear ya there! My mother, who is a therapy session in herself, had a small skin rash about 10+ years ago. The doctor thought she MIGHT has discoid lupus. She of course got her info from the old ladies at the bingo hall, and then went back to the dermatologist demanding Plaquenil. Of course, to shut her up, she got her way. They ran several blood tests which all came back negative. Still... she told everyone she had it. (Her doctor eventually told me it was just rosceasa).

When I was diagnosed with SLE in July, mom didn't understand. She just figured I had "her kind" and I needed some cream for my face (I don't even have the butterfly rash!) I explained over and over...it's in my joints, it gives me headaches, my eyes feel like cornflakes, my mouth is like sandpaper... must I go on? Everytime I talk to her she just says, "Gee you still have that? When will it be gone? Man you are always tired, you just never come to see me anymore. You need a new dr. that can get rid of this thing." My husband is much more understanding and has read a lot. We both are always learning. My kids are teens and don't understand, and I don't get all medical on them. I have all I can do to teach them algebra at this stage! My friends? To them Im just the girl who is "always sick" or "sick again". That part is depressing to me. Without handing them a pamphlet, it's hard to sum it up over a soda or a beer.

Take care and let us know how your appointment goes. Attitude is everything, and it sounds like you have a great one. Good luck!

01-05-2009, 09:32 AM
Hi Bonnie,
Welcome to the site. My name is Kathy. I have SLE Lupus and have had it for most of my life. I did not get diagnosed though until I was 36 and the Lupus started attacking my heart. I hear ya when you say that family just does not get it. I have a younger sister with it too. I try to look at the positive side of life and I flat out refuse to let this illness get the best of me. I hope that you keep posting as I would like to get to know you better.


01-05-2009, 12:13 PM
Hi bonnie,

welcome to a forum of compassionate, knowledgeable people. I have cherished this site since the moment that i found it.

I am 56, was just recently diagnosed after 13 years of searching for what was wrong with me. I am presently being tested for kidney involvement, hopefully not failure.

When my rheumy first diagnosed me, I had been in a flare for several months and continued to get worse. She gave me a Medrol injection. she explained that the medrol was used as pain relief as well as a diagnostic mechanism. Lupus reponds to this drug, where other diseases don't. I have felt surprisingly well for about a month now. Have had some breakthrough pain, symptoms, but for the most part, I got through the holiday season. When you see your rheumy, ask about the medrol injection.

good luck, welcome to a great group, keep us posted.

share a smile today,

01-06-2009, 04:59 AM
Thanks for all the support and advice. This is a great place!

I am hoping I can get straightened around so I will be able to function better. I am making notes on everything everyone is telling me here.

Thanks everyone!

I have started my list for the rheumy.

01-07-2009, 12:40 AM
Good job on your list :!: You will find that it is both helpful for you and your doc :wink:

Thanks for all the support and advice. This is a great place!

I am hoping I can get straightened around so I will be able to function better. I am making notes on everything everyone is telling me here.

Thanks everyone!

I have started my list for the rheumy.