I am updating my information since writing my story.

I am now 44 years old, and have been suffering with on and off symptoms of these diseases for as long as I can remember, back even into my childhood.  I got much worse in my mid twenties, but by my early thirties, I was unable to walk without help, or even feed myself without help.

I have been confirmed as having systemic lupus.  The rheumy that I saw in the beginning is still my doctor, and she is great.  She told me about the lupus in the beginning, but wanted to run some more tests to confirm that it is active, and it is.

The lupus has caused many problems in my life, along with the RA.  It seems that, what one doesn't do, the other one does.  That makes my life a constant battle of pain and fatigue.

I also have degenerative disk disease, and my entire spine seems to have been affected.  

In May of 2001, I had a cervical fusion.  That is to say, that two disks in my neck were removed, and grafted bone was placed where the disks had been.  The hope here was that, my vertabrae, would fuse with the grafted bone, and make a more solid bone area, and that would alleviate the pain caused by the mess the disk had been in.  I also have numerous bone spurs in and around the disks all up and down my spine.

When the surgeon told me that surgery was the only thing that would help me, as bad as the situation was by then, he asked me if I would like him to do the lower back, or the neck first.  I told him that I didn't know, because they both hurt me constantly and terribly, but that my neck was hurting worse at that particular moment, so he decided to do my neck first.

I would recommend this type of surgery for anyone who is suffering like I was.  I was in so much constant pain, that if they had told me to walk through hot coals and it would help me, I certainly would have walked them immediately.

However, nothing ever seems to be easy for me, and in my case, the surgery wasn't successful. So my suffering is still constant and very hard to live with.

The grafted bones NEVER fused.  As a matter of fact, they actually shattered in many pieces, leaving some of the fragments laying close to the nerves, and some are compromising the spinal cord, itself.

The pain is more intense now, than before, and there is the constant danger of one of the grafted bone fragments, causing paralysis.  So, that surgery to help with so much pain and problems there, will only cause me to have to have another surgery to correct the first one, and more later for my lower back.  The surgeon had scheduled me for the second surgery in June of this year, 2002, but I refused to have it done because I knew that I was going to have to have a hystorectomy, and I had to have it done first.  At least that is what I thought, but the neuro-surgeon, thought otherwise, and still wants me in for the second neck surgery ASAP.

I am now having seizures.  Some have been grand-mal siezures, some have been less fierce than those, but they are all bad enough.  I am having tests to try to determine if the lupus is to blame, or if it might be coming from the problems in my neck.  Some of my doctors say that the neck couldn't be causing it, some of them say that it could be the cause, so I am waiting to see.

Even though I am now able to accept what I have, and the fact that it is a very serious problem, I still have days that it is hard for me to grasp all of what has happened to me.  I hate the fact that something like this has the right to take over your life so completely.  It has changed every little aspect, even to the tinniest little thing that I always took for granted, has been changed dramatically.

On top of the lupus and the RA, the degenerative disk disease and all the rest, I have been having a terrible time with kidney stones.  During the episodes of cervical surgery and kidney stones, I have had a few doctors treat me really bad.  No physican should ever be able to treat any human being the way that one or two of my EX-doctors have treated me.  The lupus has evidently affected my heart, I had to have a cardiac catherization in Dec. 2001, and the PCP that I had at that time, told me that women of my age didn't get cardiac problems, that it was all in my head, of course when I told my cardiologist what he had said, he told me that this guy was very wrong and that I was very close to having a major heart attack.  I knew that he was wrong,  but he really treated me badly when I disagreed with him over this issue, so finally I stoped trying to tell him about it and had one of my other doctors make me an appointment with a cardiologist. 

 Pain medication is another issue that has caused a couple of doctors to really treat me bad.  With the kidney stone fragments constantly passing, after having lythotripsey, and with the surgery on my neck, and my lower back in constant pain, along with the pain from the arthritis, two of my doctors tried to treat me like a drug addict because I asked them for something to help me with the pain.  It shouldn't be that way in this country, but I have certainly learned, that if you are sick, and you really need help, that you might get treated like a dog instead of a human being. 

Of couse, I no longer go to either of these to so-called doctors, and have since recieved some much needed help to be able to live a half-way normal life, I just think that we humans should have the right to be treated with more respect than what I have seen out of some of these so-called medical professionals.  It still hurts me to think about it, because I always thought that if you were sick and you went to the doctor, that he (or) she, would do everything in their power to help you feel better and get well.  I have learned that that is not the truth, and that we have to watch closely and be VERY involved in our own medical treatment, or it could cost us much suffering or even our lives.

It is like my cardiologist said, "if they try to take away your hope and make you feel as though there is nothing they can do to help you, and that you are either going to have to suffer like this forever, or even die without any help, then you really need to find another physican, because no-one has the right to take your "hope" away."

Don't be afraid to FIRE a doctor, if you do NOT feel confortable with them.  I always thought that you had to stay with a doctor no matter what, but I have fired 3 this year already.  There is always another doctor that can do an even better job than the one you have now, if the one you have now, is doing nothing to help you.

Hugs to you all,,,   Dar