MARY'S STORY

<body topmargin=0 leftmargin=0 marginheight=0 marginwidth=0> <table cellpadding=0 cellspacing=0 border=0 height="100%"><tr> <td valign="top" width=210 BGCOLOR="#9999FF" TEXT="#080000" bgproperties="fixed" background="06776ba3.gif"> <div> <B>YOU ARE NOT ALONE !</B></div> <bR> <div> <B><IMG SRC="415b8d30.gif" border=0 width="184" height="211" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></B></div> <bR> <bR> <bR> <bR> <bR> <div>  <A HREF="http://members.designheaven.com/~jadedesigns/globes.html" TARGET="_top" TITLE="http://members.designheaven.com/~jadedes"><U><IMG SRC="195787d0.gif" border=0 width="120" height="125" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></U></A>  </div> <bR> <div> Butterfly by:</div> <div> <A HREF="http://www.pixelating.com" TARGET="_top" TITLE="http://www.pixelating.com"><U><B><IMG SRC="14164140.gif" border=0 width="100" height="20" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></B></U></A></div> </td> <td valign="top" BGCOLOR="#99CCFF" TEXT="#080000" bgproperties="fixed" background="06876ba3.gif"> <div> <IMG SRC="614d43c0.jpg" border=0 width="468" height="60" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <B>MARY'S STORY </B></div> <div> <B><IMG SRC="413312a0.gif" border=0 width="49" height="42" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></B></div> <div> <B>HOW LUPUS CAME INTO MY LIFE</B></div> <bR> <div> Hi, my name is Mary, I am 62 years young, and the mother of four grown and married children and four grandchildren, and this is my story on how lupus came into my life.</div> <bR> <div> During January 1982, When I was 43 years old, I came down with the flu, or what was thought to be the flu.  I spent several days in bed with a fever of 104 degrees; chills, sweats, joint pain and overwhelming fatigue.</div> <bR> <div> I was told there was nothing one can take for the flu except aspirin, fluids and rest.  After several days I was given an antibiotic.  I became even more sick after taking the medication.  Diarrhea, nausea, and so weak that I was unable to get myself in and out of bed without assistance.</div> <bR> <div> I was taken to the hospital by my, then 20 year old, daughter.  She was so frightened.  When in the emergency room I was  unaware of what was going on.  I was so out of it.  I felt like I was floating in space.</div> <div> They drew blood, took a chest x-ray, and immediately admitted me.  I was put in an isolation room.  A bone marrow test was performed.</div> <bR> <div> I remained in isolation for twelve days - seven of which I don't have much recollection of.  The fever remained at 104 degrees for several days.  I had a white blood count of 500 when admitted, (4.8 to 10.8 is normal).  ANA titer, 1:320; (which is positive for lupus).  Granulocyte antibody, positive.  When discharged thirteen days later my white blood count was 1.8.</div> <bR> <div> Discharge diagnosis: Agranulocytosis, probable SLE, or mixed collagen vascular disease.  Patient to be followed-up by her doctor.</div> <bR> <div> I spent the next month at my mom's recuperating.  My blood was checked weekly to see if my white count would go up.  I was told that no one was to come near me who was sick because of the low white count.  When the count went up to 3.8 I was allowed to go home to my family.</div> <div> Before my admission to the hospital I had been working as a bookkeeper.  I returned to work after absence of two months.  I worked at a desk with a shelf above it that contained a florescent light that illuminated my desktop.  About one month back to work I started to feel fatigue again.  This would happen every day.  I called my doctor, who was not a rheumatologist, and informed him about how I was feeling.  Little did I know then the adverse effect florescent light has on lupus patients.</div> <div> I requested he test my white blood count only because of how low it had been before.  (Keep in mind I had no idea what was on my discharge papers and I had never heard of SLE).  A couple of days later he said that the white blood count was okay.  I asked what the numbers were.  He responded 2.6.  Well, I knew at that point that something was not right.</div> <div> I immediately called the doctor who was monitoring my blood when I was very sick and he told me it was not normal.  He made arrangements for me to be examined at the University of Connecticut Health Center, Rheumatology.  My appointment was in May 1982.  They did extensive testing and my records were to be sent to my family doctor following that visit.</div> <div> I continued to see my family doctor with complaints of not feeling well only to have him tell me everything was normal.  I assumed he had heard from the University.</div> <div> Well, someone messed up.  A year went by without medication and I was feeling really bad, on and off.  I took it upon myself to call the University of Connecticut and make a follow-up appointment.  They apologized to me for not having by records sent to my family doctor.  The records and the letter that were to go to my doctor were still in my file at the University.  I  contacted a rheumatologist closer to where I lived.  He worked with the University in administering my medication.  That was in March of `83, over one year after being hospitalized.  In June of `83 I moved from Stamford, Connecticut to Nashua, New Hampshire with a diagnosis of lupus.</div> <div> Now that I had a diagnosis I was relieved.  I was not crazy - it wasn't all in my head.  I was very frightened.  I didn't know anything about lupus.  I read whatever I could.  Every time I read or heard something that compared with what I was experiencing, it gave me comfort in knowing that I was not alone in my illness.</div> <div> I was very fortunate to have the care of doctors who were very understanding, compassionate and thorough in handling my case.  I feel this is a very important part in the treatment of lupus.</div> <div> The medications that I had to take had a negative effect on my stomach.  I would have to try different anti-inflammatory medications to find one the would work for me.  Sometimes I would have to do without medication.  I would have more joint pain but I didn't have the stomach upsets.  After having pain almost everyday I forgot what it felt like to be without pain.  It was easier for me to deal with the all over body pain than to have the stomach upsets.</div> <div> Prednisone was like a miracle drug for me.  I could remember when I was introduced to it.  My pain level was down, and my energy level was up.  The side effects I experienced were mild.  I am on the thin side so the puffiness in my face and stomach actually made me look better than when I was not on prednisone.  I experienced mild depression at times.  That disappeared once I was off the medication.</div> <div> It is such a crazy disease - one day you're fine - and you never know what to expect the next day.  The symptoms that I experienced most are fatigue and joint pain.  The fatigue was so overwhelming at times.  It's a feeling that drains the whole body of every ounce of energy.  It is difficult to concentrate and speak clearly when the fatigue sets in.</div> <div> At times I became very angry with the disease.  I can say I hate it.  It has taken over my life.  The adjustments were the hardest things to do.  It affects everyone around you.  There were times I would make plans in the morning and have to cancel them that evening.  It was hard for my husband to understand.  I would feel like he didn't believe me.  I would feel very guilty and angry. I felt it was driving us further and further apart.  There were times when I would push myself even though I was feeling poorly, only to feel more anger and pain.</div> <div> Over a period of time my mental state improved.  Due to the lupus, I got to know my body better - it seemed to follow the same pattern.  With the adjustments I made I was able to accept my situation with a better frame of mind and once I learned to accept the disease, the coping was easier.</div> <div> I learned to pace myself - what didn't get done one day would have to wait till another time.  I had to learn to say no to a lot of things and not feel guilty.  I contribute a lot of my learning to live with lupus to the support group I attended.  There are things we talked about that I wouldn't talk about with my family.  I didn't want to burden them with my problems everyday.  I found that by talking it out in the group I was able to share more happier and interesting subjects with my husband and family.  It wasn't only lupus all the time or me complaining of not feeling well.</div> <div> My husband and I were actively involved with the Lupus Foundation of New Hampshire.  By working together, we talked about lupus in a positive way.  The times I was not feeling well and the lupus had flared were so much easier for me knowing that my wonderful husband was right beside me and understood what lupus was all about.</div> <div> Lupus hasn't taken anything from me, it has given me more.  It gave me a life.  I've learned to appreciate the little things I took for granted.  I have time to stop and smell the roses!</div> <div> <B>UPDATE</B> - April 2001:  I am now living back in Connecticut with my husband.  We are closer to our children and grandchildren.  I have been in remission for the past two years and off of all lupus medication.  To those who have lupus and are having a difficult time right now, don't give up.  Have hope, someday you can go into remission and I believe there will be a cure soon.</div> <div> It's a little easier in these times.  There is a greater awareness of lupus; the government has recognized the need for more research dollars and there are informative web sites like this one, as well as support groups, for you to take advantage of - things we didn't have 20 years ago.</div> <div> <B>YOU ARE NOT ALONE. . .</B></div> <div> <B><U>BRIEF MEDICAL HISTORY:</U></B></div> <div> <I><U>Rheumatic Fever</U></I> - Slight case around age ten.</div> <div> <I><U>Constant colds</U></I><I> </I>and sinus infections.</div> <div> <I><U>Scarlet Fever</U></I> - at age twenty.  I fell this was the start of my lupus.  It was right after the birth of my first child.  I still remember the severe joint pain.</div> <div> <I><U>Severe bladder infections</U></I><I>.</I></div> <div> <I><U>Around age 26</U></I><I>,</I> (1964) - with three small children, all under the age of five, I had frequent fatigue and joint pain. I had many doctor visits and blood tests based on the fatigue and pain.  I was told I needed a vacation and put on valium for five years.</div> <div> <I><U>Overwhelming fatigue</U></I><I> </I>- When seven months pregnant with my fourth child at age thirty-two.  Had to stay in bed for one month. Blood tests were performed.  I remember the doctor telling me that I was one of two patients that had this, whatever it was.  I never asked and was never told the diagnosis.  (In those days one had complete trust in doctors and never questioned them).</div> <div> <I><U>Depression</U></I><B> </B>- After the birth of my fourth child, I was told I was very depressed (postpartum depression).  I was seeing a psychiatrist and on medication.  I remember feeling very tired all the time.  The same draining feeling I have now with the lupus.</div> <div> <I><U>Ten years later</U></I><B> </B>(1980) - I was referred to a psychiatrist when I complained about feeling sick and tired with days of feeling good and days of feeling awful.  I was put on antidepressant medication.</div> <div> <I><U>I was bitten</U></I> by a spider a few years before being diagnosed with lupus.  The doctor said I was lucky to be alive.  The bite was on the inside of my wrist and the swelling was half way up my arm.  I had a red line, one inch thick, up to my armpit.  I went to the emergency room and was told it was a bee bite and to go home and elevate my arm while I slept.  The next morning I was very dizzy and nauseous.  Went to an allergist who did skin test and said I was allergic to household insects and mosquitoes.  I still get bad reactions from mosquitoes and black flies.</div> <div> <B><U>In the period</U></B><B><U> -</U></B><B><U> between 1985 and 1995 I was diagnosed with:</U></B></div> <div> <I><U>Sjogren's Syndrome:</U></I> Secondary to Lupus,</div> <div> <I><U>Raynaud Syndrome:</U></I> Secondary to Lupus, and</div> <div> <I><U>Fibromyalgia.</U></I></div> <bR> <bR> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="3cb50420.jpg" border=0 width="80" height="66" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"> </div> <div> <FONT SIZE="3" COLOR="#6600CC" FACE="Arial" ><B><IMG SRC="4170e0e0.gif" border=0 width="14" height="14" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></B></FONT><A HREF="id52.htm" TARGET="_top" 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