May is Lupus Awareness Month
In 2011, I was living what I thought was my best life. I had been on the police department for 2 years. I was involved with Kentucky Womens Law Enforcement Network and I worked a ton of off duty jobs for extra money. Around June I started having so trouble with both of my knees. I’ve always had trouble with my knees and when I would go to the doctors they wouldn’t know what was wrong x-rays, MRI’s would show everything was fine. Towards August I started to feel extremely tired too. No matter how much sleep I got I was always dragging. I stopped taking so many off duty jobs but it did not help with the fatigue. I finally went to my Primary Care Doctor about it. He did blood work and when it came back he said my blood was flagging for Lupus and he was going to refer me to a Rheumatologist.
So I went to Rheumatologist and she pretty much took all the blood I had in my body, it felt like. I had follow up appointment with her the following week and I was sure I wasn’t gonna get a clear cut answer to what was going on. I took my grandmother with me to the follow up. Dr. Chase came into the room and was quiet for a second and then she gave me the news. I was diagnosed with Mixed Connective Tissue Disease which meant I had several autoimmune diseases. I had Lupus, Polymyositis, and Scleroderma. My grandmother was completely dumbfounded because no one in my family had these diseases. She didn’t understand that it want heriditary. So course of treatment was Prednisone & Plaquenil. They tried Cellcept but I was allergic to that and had to stop. I was hospitalized a couple of times for flare ups, where they would give me high doeses of Prednisone 120mg every 6 hours. After my MCTD diagnosis in 2011 it seemed like autommune diseases were attracted to me. I was eventually diagnosed with APS (antibody phospholipid sydrome, a blood clotting disease), ITP (blood clotting disorder). Fibromyalgia, Raynaud’s Syndrome, GERD, Gastroparesis, and Interstitial Lung Disease. All auto immune diseases.
In 2012 a new medication came out that was directly for Lupus. It was th first drug made specifically for Lupus in 50 years. Its called Benlysta and it is an IV infusion that you take every 4 weeks. I still have flare ups of my Lupus but I’m able to bounce back from them a lot better than I used to. In 2013 I was hospitalized for low blood platelets (the ITP). My count was 0 and its supposed 150 or higher, so pretty much blood was leaking out of my veins. Also in 2013 I was hopitalized for have several blood clots in my lung.
Right now, the main annoyance I have is my Gastroparesis and I am a patient at University of Louisvilles GI Motility clinic (it takes forever to get in there and you need doctor referral). We are trying to treat my Gastroparesis with a 12 series weekly infusion, that I have done at home by a home health nurse. The medicine is called IVIG and its supposed to boost my immune system and stop it from attacking the good cells. I am also on Emends and Nexium, and Hyscomine nausea vomiting medication. I also am on a ZAP protocol which is I have IV Phenergan and IV Zofran and IV Fluids delivered to my house and I give them to myself as needed. My home health nurse Angela, taught me how to draw them up and administer them in my medi port.
Yes, I have a lot going on healthwise but I don’t let it get me down. I am lucky and I am hopeful. But May is Lupus Awareness month in case any of my readers didn’t know. Lupus is an autoimmune disease. The best way I describe is my body hates itself. There are 3 types of lupus:
Systemc Lupus– deals with internal organs. Instead of attacking the bad cells the antibodies attack the good cells as well. It doesn’t see the difference. So it causes damage to Kidneys, Lungs, Heart, Blood, etc.
Cutaneous Lupus- deals with the skin. People with this lupus are pretty much allergic to the sun. Being ni direct sunlight drains the energy out of them and also can cause rashes on the skin.
Neonatal Lupus- Babies that are born with lupus..normally growing out of it by the time they are 6 months old.