Mahalalove.com

My life after being diagnosed with LUPUS has its ups and downs as living with any disease would. I have my good days and I have my terrible just leave me "hell" alone days. I keep up with my regular doctor appointments with the same Rheumatologist that gave me my diagnoses. I just love her dearly. I call her my "mommy." I learned to live with the side effects of the steroids (Prednisone). I never returned to the person I used to be. Maybe that's a good thing. Living with this medication is hard. It can do more bad than good. But I'm sure it's like that with any medication.

We are prescribed medicine to treat and maintain not "cure." It's given to us to stabilize a situation. Not take it away completely. I'm now taking 20 mg of Prednisone a day. My doctors goal is 5 mg, mine is 0 mg. Wishful thinking! I must admit that it has helped me tremendously. Right now it's the drug of choice that many LUPUS patients have to use. I have been hospitalized 6 times living with this disease. My organs that have become affected by LUPUS are my heart, lungs and gastrointestinal organs (stomach and intestines). I've been hospitalized with having Pericarditis (peri-CAR-di-tus) and/or Pleurisy (ploo-RIS-eeh). It causes a lot of unbearable chest pain and shortness of breath. There is fluid surrounding the lining of the heart or lungs. Sometimes both. Double the pain. This causes inflammation. Misery I tell you. And when that happens the steroids are then increased to reduce the inflammation. Once when I was hospitalized the Prednisone had gone up to 120 mg a day for 3 days. It had to be given to me intravenously (through an IV.) So I still have my size 14's or "my big girl clothes" as I like to put it. There was a time when I got up to 185 lbs. little ole' me. My poor bones could not take it. My knees ached. My chest hurt. My bones were too small for all that weight. Besides when I laughed or smiled I couldn't see. My kids called me "chipmunk." My mother called me "butterball." I just called it "fat." I've also had Gastritis (gas-TRY-tus) the lining of my stomach became inflamed and deteriorated due to disease and the medication. I had a piece of my stomach removed. Also, a mild Ileus (eel-E-us) a blockage of the small intestines, talk about pain. Whoa!! Constantly bloated. Constantly vomiting. Constantly burping and passing gas and running to the bathroom, PEEW!! I was miserable and could not even hold water down. I had taken the Aspirin, Arava and Methotrexate for so long that the lining of my stomach had deteriorated. So I had to be weaned off of those medications.

I've never been back on them except the Arava. I'm coping the best I can. That left me with the Vioxx, Prednisone, Plaquenil, Procardia, I kept the Folic Acid and added to help my stomach heal was Prevacid (prev-UH-sid) at 30 mg a day. But of course with the scare of people dying from taking Vioxx I was taken off of that medication. I was truly upset. That medicine did wonders for me. Especially my hands and wrists. So I was a guinea pig with other medications but they didn't help me at all. It was like taking candy. "What a waste", as my brother would say. So for a long time I had to take over the counter pain medication. It was so hard because they didn't work and my knees, hips, back, hands and wrists were suffering tremendously. My doctor told me about a new prescription medication called Celebrex (cel-UH-brex) I started taking it at 400 mg. twice a day. Wow, it helped. It was great. But yet again, another prescription medication scare.