Hello, New here have Lupus

Hi Yvonne, nice to meet you.  My name is Trish and I am new to this site also.  I was diagnosed 3 years ago.  I am on my fourth rheum. and I am finally happy with how he is treating my lupus. Every day is different, you never know how you are going to feel.  I get flare ups but I don't know of any damage to my organs, yet.  Not to be gross but I woke up this morning and went to the bathroom and had blood in my stool.  Luckily I went to this website and read that it is very important that I contact my doctor.  Right now I am waiting for her office to open.

My lupus made it's entrance at a very stressful time and I think that is what brought it on.  My husband and I had his daughter and her five young children living with us.  It was a very trying time and I do believe that if they had not moved in I still wouldn't know I had lupus.

I am now taking Methotrexate weekly and it seems to be working. When I have a flare up I have to take steroids.  I really don't like them but they sure work well.

about a year after my sister was diagnosed with rheumatory arthritis I was diagnosed with lupus.  Hmm, isn't that weird?  We don't know of anyone in  our family that had either.

I also have bicuspid aortic valve which means I will probably have to have heart surgery at sometime in my life.  I am 54 and I'm guessing it's not far away.  I'm very nervous because I also have the clotting problem that goes hand in hand with lupus.  Do you also have that disorder?

I'm very fortunate to have a very understanding and loving husband.  It was hard for him to understand the whole disease but he ended up going to a few of my dr. appointments and it really helped him understand and he was able to ask questions about things that were on his mind.

Yvonne, do you have someone to help you through this?  I hope so, I would hate for you to be going through this by yourself.

GTG, have to call the doc.

Take care.

Barbara,

Thanks you for responding so quickly.  My heart goes out to you!  I do have a couple questions and when you feel up to it you can respond, please don't hurry.  I was diagnosed at 51 and I am now 54.  From the time I was diagnosed until now I feel like it's been down hill.  I do however feel that the Methotrexate will help.  I would like to know how old you were when you were diagnosed and how quickly it became worse.  I am doing everything you said to stay healthy except for exercising and staying away from stress.  I work full time and have a large home to take care of.  Saturday's are my day to clean and I think I do a good job of doing a little bit and then relaxing.  Do you think this enough exercise?  During the week I come home from work, cook dinner, clean up and I am ready for bed.  I'm sure you have heard this before but I cannot find the strength nor the time to exercise.  I absolutely love golf but I had to quit half way through the summer because my left wrist has RA.  I helped someone at work put something in her car and since then I have pain in the right side by my clavicle.  It won't go away.  I guess I just want to know how you fit in exercise.  I was told Yoga is great but then I have always had a problem with my knee.  I don't know if it is my ACL, but something goes out of place and I have to push my leg up against a wall and straighten it so it goes pops into place.  I'm afraid if I do yoga that will happen.

Sorry for rambling on but I am so glad you responded and it feels great to talk to someone.

My friends are telling me how many Lupus commercials they are seeing on TV.  This is great because we all want everybody to be aware of this disease.  It's a start, right?

God bless you and stay in touch when you can.

Hi Trish:

Thanks for you well wishes to me. Lets see if I can answer your ?'s. First, it sounds like you're taking on actually to much and not listening to your body. Lupus is a hard disease to control at times and we have to be VERY attune to our bodies.

It sounds like you should tired working full time, cleaning a large home and preparing meals. For me I'm very limited in how much I do around my home. My hubby of almost 29 years does the bulk of it normally. I'm a clean freak LOL and when he doesn't do it the way I like it, I go over it again. He does all the cooking here in our home as I never know from day to day if I'll be able to do it.

My exercise comes from doing pulmonary rehab 2 times a weeks. I also do stretching for my muscles that are very tight, and I do Physical therapy 2 times a weeks. I do exercises to help with my chronic Achilles tendonitis and my low back pain. I also try to get a massage every 14 days and my massage therapist also helps stretch my muscles. Since I have Fibro in addition to the RA and Lupus, my muscles burn and ache 24/7.

When having a bad day and feeling very unwell, I make sure all I do is rest. I do not attempt to exercise, clean, go out anywhere, or do anything but sleep. If we ignore our bodies when it's telling us we need rest, we only make our flares worse. I would suggest that maybe you make yourself a toned down schedule for cleaning of your home. Try to make meals that are easily frozen and can be reheated. Or use a crock pot for meals. The stress that you're dealing with also needs to be lessened if at all possible.

These types of things set us off in a flare. You need be very careful not to take on to much and if you're not good at saying NO, you need to learn to be able to say it. Overall, you might want to consider cutting back at your job for a bit and see if that helps some.

I was 22 when I started showing signs of lupus. I was 35 when the officially said I have it. I truly believe letting me go 13 years w/o treatment is partially why I'm so ill. That said, I guess I really started going down hill after I had 3/4 of my colon removed in 2005. I was 40 at that time, I'm now 48 and am beyond sick. Of course, I've got the two AI diseases, the Fibro, and the LGL Leukemia. I've also had issues with major blood clots twice now, and am on blood thinners for the rest of my life.

I've also been accepted into a research study at NIH (National Institutes of Health) in the Infectious Disease Clinic. I've been suffering with severe problems with warts. My thumbs are deformed from them, I can't fight off the virus as I have NO immune system at all. I'm currently undergoing radiation therapy to attempt to kill the warts.

The Dr's believe that even though I've been on immune suppressing medications since 2002, I have an underlying Immune Deficiency Disorder of some type. I have no B cells at all and my T cell count is only 5. My T cell count is lower than the average AIDS patients. The Dr's have no idea why, so I pick up every virus, infection etc. With this going on I was told that I must be very careful about infections, one literally could kill me in a heartbeat.

I nearly lost my life in June 2011 from pneumonia in both lungs, ended up on life support for 5 days. They weren't sure I would pull thru, of course, hubby told them I was a "Tough old bird and I'd be fine" and of course he was right.

Now I'm not a Dr or a medical professional so I'm only offering my opinion. However, you're early on in your disease and I'm not quite sure that your worsening per say. I think maybe that you've just not been stabilized yet. For many once the disease process is controlled they do very well. We have several members here who are now medication free and have been for some time. Then we have others who are in the middle of the road, and some who seem to flare all the time. Lupus is a toss up, no two patients are the same. So it's really hard to predict how one will do vs. the other patients.

I'd suggest you try not to worry to much about worsening. It's a good sign that you have no organ involvement as of now. I would continue on with your treatment and give the MTX more time to work. Keep a journal of your symptoms and when you're uncertain if it's Lupus related call your Rheumy or ask here. I think you'll do just fine and you have to think positive and listen to your body, it will let you know what you're NOT doing right.

If I can help in anyway let me know. Take care and be well.

Hugs,
Barbara

PS.... Did your Dr get back to you and did they figure out why the blood in the stool?