WELCOME

Hi! My name is Mick Breske. I have undifferentiated Connective Tissue Disease.   There are a few of us lucky ones out there that have an autoimmune disease but just can't figure out what to call it. "IT" was a good word as far as I was concerned but doctors seem to like the "U" word.

I went years trying to figure out how to deal with this "U" word. At one doctor's appointment I'd be told I have a "lupus-like syndrome." Next time it was like scleroderma. I even wondered if maybe my problem was not a connective tissue disease but rather a hearing disorder -- I was probably just hearing things wrong! Then all of a sudden it's called an UCTD disease. So, doc, lets call it "Lupscler" or "Sclerlup" or any of the 1001 autoimmune diseases. It doesn't matter to me as long as you don't keep bouncing me from one disease to another -- just PLEASE don't call it the "U" word.

Now just how to deal with this mysterious "U" word was far beyond me. So I simply told everyone nothing. I was nuts and that was it. My dearest and closest friend at work, God bless her, hung in there. She just kept saying, Mick this isn't a head problem. This "U" word means something! One day she told me that she knew a lady, who knew a lady, who had lupus. I thought, oh goodness now my closest friend is meddling in my business. She was very persistent and eventually I gave in. I set up a meeting with this sick lady. I must admit, at least, when I got done talking with her, I finally knew I wasn't nuts.

So now I know what I have is real. It's a pain in the backside and it's causing me trouble in every area of my life. So now just what do I do? What do I tell my family -- that I have some kind of "U" word. That I just don't feel good but doctors don't know what it is for sure? What do I tell my boss? I still did not talk about it much. I only discussed my doctor appointments with my husband and my dearest friend. All my other friends knew something was wrong and it was the "U" word but no more. So another meddling friend came up to the window where I worked and said, Mick you must go have lunch with this lady who has lupus. I could have shot the meddler dead on the spot. I did just about stare her to death.

A week later I made friends with my first "sickie friend" as we now refer to each other. She was just the best! She called every week to ask me if I was Ok. She was there when I hurt and had all these wonderful ways to help. Epsom salt. I did not even know stuff like that was in stores. It sure did help on those cold hurting days. As I soaked in my tub I could have kissed her feet. I won't let her read any of this, as it would go straight to her head.

So here I am a connective tissue outcast! My symptoms include joint pains, lack of concentration, forgetfulness, muscle aches, malaise, rashes, nausea, dizzy spells, terrible fatigue, Raynaud's, ear aches, abdominal pain and rib pain. This only tops my list, as the list of symptoms was much longer than any list that I would give my husband as he walked out the door to Christmas shop!

Anything goes and the worst of it all was that this "U" word had it's own time schedule. I would hurt one night and not the next.   I found that if I was in the sun I hurt. Our family lived on the water and owned three boats. How was I to just give that up? I played many musical instruments but I found that when I played them my fingers hurt and I couldn't type. So I gave up playing music so I could work. The fatigue was unbelievable. I would go to work and be ready to nap before 10am. I would call in sick and sleep all day. My knees hurt so bad I couldn't even go shopping anymore.

I was trying to be the working career superwoman. I loved my job. No way was I giving that up just because I was sick. Give up being a mom now there was a thought! How about give up the wife part? I rebelled at the idea of having to give up anything. As time rolled on I found that even though they didn't have a specific name for this awful disease it was just as bad as any named autoimmune disease.

Finally, my husband of 25 years, said this is enough. Something has got to give. To this day, he believes that if I hadn't stopped working I'd be dead. I'm not too sure about that but I will say that giving up the career has given me my life back.

During all of the above I went to many doctors. Some weren't the brightest and some were very intelligent. Since I had so little knowledge about UCTD, it was very hard for me to trust the fact that the intelligent ones were making the right decisions on my behalf. I went to the library and there found a half page on lupus and a fourth of a page on scleroderma. I didn't know where to find information on these diseases.

My husband took off one day with our computer. He come home later that evening and set the computer all up and said, "there, honey, we are hooked up to the Internet. You research the net and find out what's wrong with you.". The information compared to what you can find now was a little drop in the bucket. I can thank the Lord above that there was one Lupus group forum. I read every word and listened to every complaint. The more I read the more I found I was like them. From there I did searches on every autoimmune disease available on the Internet. This did not give me a diagnosis but it did inform me of what I was dealing with and that I was not the only one to deal with such frustrations of not knowing what the "U" meant.

At first I was scared to talk to these people since I was new to the Internet and had no idea how to use e-mail. There are many web sites out there with the medical information that will explain autoimmune diseases but I found talking with the people who have the disease were the most helpful to me.

The most complicated thing about the "U" word is its meaning. To find any information you have to research not only one autoimmune disease but many. Now from my experience you will not find a name for the "U" word out there in cyber space. What you will find is information so when you go into your next doctor's appointment you can at least understand what he/she means.

I remember leaving the doctor's office trying to remember how to say SCLER O DER MA! By the time I returned home the only disease I could remember was lupus. I kept telling the girls at work "scaldaderma." One day a friend said, "do you mean scleroderma?" I said yes. She quickly informed me that two years ago her Mother-in-law died of that disease. That didn't help my attitude one little bit. So it helps to read and know the symptoms and compare your symptoms. I kept watching my hands like they would turn hard in front of my eyes or something.

As of this date I still have the "U" word tagged on to my disease.    My goal is not to find out what the name of my disease is but to let others know they are not alone. My doctors are treating the "U" word and that is the most important thing. It took many years for me to trust my doctors simply because I could not find out any information. It's very frustrating to be the outcast. I had one doctor tell me, " the last time I saw one like you was five years ago." I was crushed! I didn't know what that meant. Did it mean the last one he saw didn't make it?

So hang in there as I don't like to be the only outcast. Knowing there are other autoimmune outcasts out there in the big world makes me feel so much better. My goal is to work on a site that will bring information not only to others who know which autoimmune disease they have but also to those of us who might never have any other diagnosis but that of the "U" word.

4-15-98

A LUPUS SYNDROME ANYONE?

Hi there once again! It's been a while since I updated my story. Not that there was any news until just lately. First I suppose I now can call myself an "L" word. You know Lupus. I don't know that the feeling of knowing what it is makes it any easier to deal with than having the big "U" word.

Let's see now, where should I begin? Oh ya! I got these blisters on my hands. First doc thinks it's eczema. I go to the Dermatologist and Dermatologist thinks it's eczema. These are red blisters, from pinpoint to the size of a pencil eraser; sometimes there are many, other times only one. Sometimes on my fingers and knuckles; other times they pop out on my face, neck, chest, arms and back. These bumps/pimples/blisters would cause pain in the area before you can even see them. Then they pop out and hurt for a day or two before they start to crust over. I have never had any of them pop open with any type of fluid.

In January I had terrible rib pain and was given a higher doze of prednisone. Then the blisters just disappeared. So my Rheumatologist said if they returned I was to have them biopsied. Of course, it only took a couple of days after the taper of the prednisone to have the blisters multiply like rabbits on my knuckles.

I do just what I'm told and have these biopsies. A week later I get the call that says they are inflammation of the Connective Tissue. Later I find out this means inflammation of the blood vessels which is vasculitis and it was consistent with lupus! Ok, so prayers are still answered even after five years! Or so I thought at the time.

TO BE CONTINUED ON PAGE TWO!

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