new things, new ideas & finally new treatment...

Yesterday, what a day!!! Benlysta got approved for treatment in Lupus patients which hasn't happened in over 50 years!! Such an accomplishment which has been all over the Lupus community. I don't even know how to express how I feel about having a drug, finally. I was diagnosed in 1998 and has been dealing with my Lupus till this day. In the past, we had two options: first, you can deny the drugs and just check your body, yearly or even more often. Secondly, you can take the drugs to keep you "comfortable". Being comfortable means that you take the drugs that they think may help the symptoms that are existing at that time and just deal with the complications and reactions from the drugs. You have to make the choice of what is more important...staying around longer to give up another organ. Depending on what type of Lupus you have, some organs are already compromised. As for me, it happened slowly, but definitely. At this moment we are dealing with my liver. This was something that the doctors had already told me would be coming because of all the medications that are given, your liver only can take so much - and after time, it will become one of your "problem" organs.

A new week...

A new week, another day passes. As we are getting ready for to fulfill this upcoming week. Apparently everything I made for last week got everyone a bad stomach ache. I have no idea what I am making for this week, but hopefully we don't all get sick. I think it is more like a virus that is moving through our family. My daughter has been awfully ill these past few days. She refused to go to the doctor, but I was able to drag her in on Saturday. The doctor just said she had a bad cold that is accompanied with a cough.


I tried on y new dresses last night and I have put on some weight. Almost too much weight that I can't fit in two of three dresses. I guess as long as I fit into one. It is quite depressing. The worse part is that I haven't been eating. My gastro can't figure it out, my primary can't figure it out. I have an appointment to meet with a counselor on Tuesday. I don't know if it will help, but it doesn't hurt to try. I have done it in the past and I don't really remember how it turned out. But I am sure we will all figure it out soon enough.

night owl :D

I am awake past one a.m. (which) has to be the first in a long time. It is the weekend and I took a nap in the middle of the day. I didn't do much today. I got to harass my teenager to see if she finished her homework, of course not...she was on myspace (ah hah!). I had to keep a close eye out on her or else she would have dragged it out through the weekend. She finally sounds okay, but is still coughing up mucus. So I will have her start her clarinet lessons tomorrow and we will have to squeeze two hour lessons this next week. The week after is her audition. The timing of this cold is just great, argh! I think I might be getting sick too.

As I was going through my mail...my unemployment decision was reversed! Yay!! I just have to wait a little bit.

As far as health goes...I'm on new medication - Amitiza. I'm not sure if it will work. I officially have carpel tunnel syndrome. I have to wear braces only at night. It comes and goes. I think the only time....it when I fill out of paperwork by hand. Typing doesn't seem to aggravate it as much

I booked my mother and I booked reservations for the December's Traveler's Agent Conference. She wants to stay there either earlier or after. So I just have to work out the flight plans & a show.

I have been doing the pool therapy twice a week, which has really helped. I am bleeding to death, or else I just feel like I am bleeding to death. The last time I bled like this...it was for a month. And as I recall very painful!

Keeping Up...

As I probably said somewhere in this blog that my rhuematologist gave me a whole list of things to do, including:

see the Cardiologist; see the obgyn; see the gasterinterologist(sp?).

I went to see the ob/gyn, had a pelvic ultrasound, outcome: unknown. Symptoms still persist, bleeding.

I went to the cardiologist, had an EKG, ran on a treadmill and almost passed out, had a heart ultrasounds, outcome: everything is ok - as in cardio(wise). Symptoms: chest pains.

I went to gasterinterologist, had an Eg-D (no idea?), outcome: dilated esophagus and put on Nexium. Biopsies were taken from the edema areas, redness and irritability noted and a ringed esophagus (?). Symptoms: inability to eat, nausea, digestion.

I did all of this in less than three weeks and suffered ilke a crazy woman yesterday because I didn't know I was given versed (amnesiac) so I guess I wouldn't remember the procedure. I wouldn't recommend going to work the next day, which is what I did. I must've been a real "air-head" coming into and out of consciousness.

My ongoing saga of bleeding, maybe my mensies, maybe something more? Who knows? I have a nurse practioner that I have never seen, just out of school, obviously doesn't have much patient/doctor relationship skills.

What I've Learned: You can be squeezed into a guinea pig, but unless you try all options, you will never really find the cause or cure for whatever you have, but I know that I can swallow now. Yay!! The gasterinterologist would have been the last person I wanted to see, but I couldn't deal any longer!!