It Took over three years to detect I have lupus

by Jennie Fatta
(town of Tonawands, NY USA)

I have Lupus.
My name is Jennie and I found out in May of 2009. After years of many doctors and many mis diagnoses it was confirmed with a biopsy.
The First few years were bad. One medication after another it was making me so very very sick. I felt like I was being slowly poisoned. The pain, in the beginning was not like now, now it's worse.
In 1997 after the birth of my twins, my son Nicholis was born with an autoimmune disorder. His twin, Amber, was ok and healthy at that time. I, on the other hand, did not know what was going on with me. I was sick, tired, and green.
YES! My skin literaly turned green. I was told I had Kidney disease and that the pregnancy took all my strength. By march of 97, I had gastricbypass and had to have a few other parts removed not just 2/3 of my stomach. So I was taken to Rochester, New York where I stayed for a week and a half.
I was a 27 years young now with 4 children. Veronica 7, Ashley 5, and now Amber-Anne and Nicholas 3 months old. Years to follow were bad. I had to move my mom up from Alabama because I was now going to college and working full time and getting help from the state. Thank god!
My illness was at the point of showing itself and leaving then coming back, each time worse than the next. It was affecting my work and the way I looked.
By 2003 I was so scared that I had some bad cancer that I went to see the Doc and explained that there was something more then a rash and extreme fatigue. My lymphnodes were swelling, rash was worse, and I was not myself by far.
He did blood work, xrays, and said OH! you are anemic and are almost a pint low in hemoglobin.
It was at that point, I believe, was the beginning of my disease. So I had blood transfusion then took all the necessary pills and vitamins required along with the creams.
Next I saw an OBGYN and found out that I had a mass in my cervix and an irregular pap smear Wow! I was scared.
It is 2004, My husband had left me 2 years back by this time. I was alone with 4 children. My mom was my saviour. Between the fighting with him and losing my babies to my mom.
My life was spinning out of control. I was always at the doctors and nothing, hello HELP.
In 2005 I wound up in the hospital and stressed out so bad that I had what they called heart palpitations, finally a stroke from all the pain in my body and working so hard to get the twins back. It was never ending. The pain and sleeplessness. I would lose job after job.
I was taking so much tylenol it was damaging my body along with anything else I could find for pain. They could not find anything that would cause such pain and outbrake.
The doctors said I needed a specialist. Finally someone with a plan and a brain for a doctor.
With NO insurance now because I made $1.25 too much for medicaid, I lost my coverage can you believe it, so I did the best I could till 2006.
I applied for assistance to get medical care on a sliding scale. My co-workers had to take me home I was so sick that morning. I was slurring my words and unable to think and function It was not normal. I felt the onset while driving to work.
They took me home and I had my mom call the doctor I fell asleep for 16 hours and woke up like I was ran over by a semi truck.
By 2007 I had changed doctors 5 times many different meds many different symptoms. They thought I was making it up or something. Very few doctors truly give a shit you are just a number. I have been told that to my face with witnesses. They made me cry the way they talk to me and treat me.
NOW, I have had pain so uncontrollable, I could not sleep, move, eat. Sometimes it hurt to breath. I now have swollen glands, gained weight, started forgeting things and the breakouts were so bad I was on steroids and pain killers and tramidol antibiodics. I lost all my teeth, my skin changes all the time I look like a leper, loosing my hair and the rash and fevers were uncontrollable.
These episodes would last months at a time. Then I found out I had Fibroides and a blood infection that was causing my white blood cells to go crazy at a level of 375,000 and as high as 425,000. My blood had stopped producing and my Iron was gone and my body would reject every thing they gave me. It was to the point that no matter what they gave me or did, my blood and body would now stay, anemic and out of control.
I had to have my stomach carterized twice in 2007 to 2008. Finally my bones were giving out and I hyper extended my knee.
Wow pain was not pretty. I still tried to work and was still a trooper, I was not giving up. I did not care what they said, finally I was in and out of every hospital trying to get help.
The ER doctors want to help more than the specialists. On May 18 2009 when I was in hospital for my knee they took tests. Then called me back in for a biopsy of the nodueles sticking out of my skin, one from my neck and one from my wrist.
I was at work and it was May 23 1:24 pm lunch I called the Dr office back and they said I needed to come in. Low and behold I have Lupus Systamatic Lupus Ethramitaci.
Ok I was out of my mind WHAT DO I HAVE! I cried and was so angry that I have had this for years, and yes! the doc said for as advanced as my lupus is, I have had to have it for many years, and now that it has shone it's ugly face in full blown view, they can tell that it has been on set for a very very long time.
I knew for all those years that I something wrong. I had anemia and needed potassium and vitiam A and vitamin D.
I was going to a hematologest for treatments and infusions for 10 weeks from June 2009 till August 2009 and put on placquinal and steroids and lortab tramadol, ultram 100 and antibiotics.
For my stomach whats left of it, pronix and pepsid. That still does not work. The pain is so bad and I try to control it with out pain meds, I have given myself a bad heart.
I don't sleep, eat, wear clothes as little as possible because it hurts my skin, and now they are starting over again, and with new sets of doctors.
My health is diminishing and I need help to this day, April 8th 2010.
God bless all of us! It has been a long and painful road.
If you know of any way to help with the memory loss I would like to hear it. I was an Accountant and Tax Preparer and can no longer perform my job to the best of my abilities or any job. My joints an muscles feel like glass shards are in them.
I am now allergic to sun, and the cold is my enemy. My RA is in full swing as well.
It is so hard to have teen age children and not be able to enjoy all they do. They have given up so much for me. They have turned 13 this January 5th, and I could not give them a 13th birthday again.
They give up everything for their sick mom. My illness has cost lots of money. My Children are my Heros, I know they suffer with me. I have heard them cry and put off doing normal stuff teens do for me. They have not had a birthday party since they were 6 years old and no real fun.
I would sell my soul to give them just one happy Birthday party or take them to a fun place. They are very selfless and give up too much for me. I want to Publicly Thank Nicholas and Amber for giving up so much, my heart breaks with such sadness to always be the reason they give up being children. I would also like to thank My oldest Veronica 20 With Two of her own. Thank you for all your help You are my Rock. Lots of love and respect to all my Lupus families out there hang in there, I am.