Hello to all of you.  My name is Jackie.  I am 34 years old, and the mother of a wonderful 12-year old boy.  I was so happy to find Lynne’s site because I can finally put a name and a “face” to what has been a never-ending series of health problems since about 1995.  I have read all of the stories on the site, and with each one I find something very familiar in my own life.  And I finally know, that it’s not just all in my head and I’m NOT a hypochondriac.

     I was diagnosed with Lupus in October 2002.  Specifically, my lab work indicated Lupus (I had an ANA off of the charts and positive Anti-Ro and Anti-La antibodies).  The rheumatologist I am seeing also suggested that I have a component of Raynaud’s and Sjogren’s as well.  I personally think that the majority of my symptoms fit the Sjogren’s profile and not so much Lupus.

     When I was pregnant with my son, I developed the worst heartburn and esophageal burning.  I went though antacids like they were candy.  After he was born, the heartburn continued but only during the 10 days right before my menstrual cycle.  Ok, I think it’s hormone related, I’ll continue gobbling down the antacids.

     In 1995, the right side of my jaw started swelling like someone punched me.  Upon further testing, I found out that I had parotid gland stones.  I was told with plenty of fluids they would probably pass out of the ducts on their own.  I could barely speak one sentence without needing water.  My mouth was so dry it felt like someone put cotton in it.  Around that same time, I had pancreatitis and pneumonia just a few months apart from each other.

     In 1997, I began having digestive symptoms—acid in my throat, nausea, bloating, and diarrhea after nearly every meal.  I had a mild bout of pancreatitis again, so my gallbladder was removed.  The pathology showed chronic inflammation.  Shortly after that, I had a biopsy of my cervix for an abnormal pap—again, chronic inflammation.  That same year I also started getting bladder infections nearly everytime I had intercourse.  Here I was, 27 years old and I felt like I was falling apart.  I was referred to a urologist by my G.P.

     In January, 2001, I started a new job and went to a seminar in North Carolina.  As soon as the plane landed, I realized that my ears never adjusted to the altitude and I went to this class for an entire week and could hardly hear.  After several trips to my G.P. when I got home and several rounds of antibiotics for what looked like an ear infection, I was finally referred to an ENT specialist.  After a year of fighting fluid behind my eardrums, I had a CAT scan.  They then suspected I had lymphoma because my adenoids were about triple the size that they should be, and lo and behold, my right and left parotid glands were both absolutely loaded with stones.  I had my adenoids out and guess what?—chronic inflammation!

     I soon began noticing that my feet and ankles were hurting a lot, especially getting out of bed in the morning.  They were so stiff I felt as if they’d snap off if I bent them the wrong way.  I am an x-ray tech, so I’m on my feet all day as it is, but this was just getting worse and worse.  In 2002 I started having problems with fatigue.   My right knee started hurting—snapping and popping and aching even thought I hadn’t injured it.  Since I still had the ear problem, I opted for tubes in my ears since I couldn’t afford to have the knee looked at as well.   I ignored the knee until I couldn’t bend down and get back up; at the same time, my hands started to ache and I got a huge lump on the knuckle of my 1^st finger of my left hand.  So, back to the doctor I went and happened to mention the knee while I was there.  He ran tests for Lyme disease, RA and several others.  The ANA came back positive but the RA did not, so he sent more blood for a Lupus panel and that came back positive.  They put me on 6 months worth of Prednisone and Plaquenil that I am still taking now.

     As of now, 2004, I still experience dry mouth, dry eyes (I can hardly ever wear my contact lenses anymore) and digestive problems.  Occasionally I will get the most severe itching on my legs and thighs.  I'll scratch until I get a bruise the size of my fist.  It's so intense that I can't stop until I've scratched it to the point of being painful to touch..  My tongue gets so sore with certain foods (vinegar, ketchup, pineapple and some toothpastes) that it turns bright red and feels almost like it has been burnt.  I’m so tired most days that I come home and fall asleep on the couch. I’m missing out on some of my son’s after school functions because I don’t have any energy. My left foot has been giving me problems for the last nine months.  I have been on multiple anti-inflammatory drugs with no relief.  An MRI of my foot was negative.  I went to see my GP (my rheum. Dr. is 280 miles away) and he put me back on Prednisone until my next rheum. appointment in 5 weeks.  My right hand gets extraordinarily cold at times, which I understand is part of the Raynaud’s.  That is worse in the winter.  Summers aren’t too bad, but I have several pairs of gloves stashed all over the place.  I’ll tell you that I get some strange looks in the grocery store when I’m in the frozen food aisle and it’s 90 degrees outside and I’m wearing gloves!!

*UPDATE 1/05*  Six weeks ago I started taking Mobic (an anti-inflammatory) and Quinacrine, which is another anti-malaria drug to treat Lupus and then Paxil (an antidepressant).  I haven't felt this good in years!!  My feet only hurt in the morning, just getting out of bed, but the rest of the day they are fine.  A lot of my energy has returned and I can at last have a positive outlook to my days instead of dreading the 8 hours I am at work.  I won't say that I'm 100% better, but I feel at least 95% better.  Still have problems with dry eyes and mouth and my tongue still gets irritated with some foods, but I'm feeling fabulous at this time!!

     Thank you for reading this.  Everyone’s stories have made me feel “at home” with their experiences.  I do want to say, however, that patients with these problems need to be persistent with their physicians.  My GP is a really wonderful guy, but didn’t put these symptoms together until the arthritis and joint pain—he just kept referring me to specialists to deal with each symptom as it came up when he couldn’t “cure” me. Be your own boss—take control of your health.  At the hospital where I work, we are constantly reminded that when the patient says something hurts, it hurts.  No ifs, ands or buts.  Take care of their pain and make them comfortable or find someone who can.  Remember that in your own disease process and refuse to be ignored.

Story Copyright © 2004-2007 Jackie