When and how did you find out you had lupus?
I was diagnosed with Lupus after I had been in a coma for six weeks and Rehabilitation for 3 months….. But I digress….3 months before going into the coma, my eyes were very yellow although no one was noticing it, I noticed it. After a week and from having Sickle Cell disease I figured I was having Jaundice. Although I never had it, I knew the signs and it was a likelihood from Sickle Cell. I decided to check it out, well I was given antibiotics (but still not with a Jaundice diagnosis). I was to follow up after 10 days….all clear-green light. I went on my vacation to Hawaii right around this time May 11…. I believe. When I got back I had my normal check-up as in Sickle Cell etc …. Blood work came back with EXTREMELY high liver enzymes levels. I saw a specialist in June (who I might add was very surprised that someone with sickle cell had such high liver enzymes). They wanted to do a liver biopsy, but needed to make sure it was okay with my SS Doctor. They agreed, meanwhile in July I got into a sickle cell crisis, with high fever, constant throwing up, and extreme pain. Me being stubborn (don’t care for doctors, hospitals or medical) I believe they are incompetent. While they save lives, I feel very uncertain about some of them. I finally went to the ER and got admitted where eventually the pain and fever were controlled. My liver was still problematic, but after 3 days I was discharged. Liver biopsy was scheduled in August … All went well but results stated I had autoimmune Hepatitis (meaning my body is rejecting my liver)…I didn’t really understand what that was all about, I even made fun about it to the doctor saying for 40 years my liver has been there and now my body don’t want it in there so it’s kicking it out. Then…… 2 weeks later I am in a coma. Honestly, I have no memory of 2 days prior to being in the coma or anything about the coma. Through the recollection of my family I have pieced most together. Apparently, it began with me complaining of sickle cell pain…etc…. ER…Admission….overnight coma. They began treating me for sickle cell with Morphine for the pain. Then all my organs began failing…blood transfusion and plasma transfusion were not helping. Kidneys failed and was placed on dialysis… Liver failed, brain hemorrhaging, blood clots, lots of other things in between….through my intubation I broke 2 teeth, then had to have a Tacheal Endotracheal intubation (Trech) to assist in breathing. While in the hospital, I was fed through a feeding tube….. 6 weeks later I was awake enough to be transported to the only rehab center that would take me while still hooked up to machines (again no memory but I still have a feeling of hatred for this first rehab). My family moved me to a second Rehab.
How has life changed since your diagnosis?
Life has changed because of the coma… Not so much now because of Lupus. I know of all the possibilities that can go wrong with my life but as of present and current day none yet. I did lose my job, my insurance, my house and of course my short-term brain function. Twenty-eight months later and I am still struggling mentally, financially, emotionally and physically. Because of my faith and my determination, I will not let this control me. I am on daily medication and despite having Sickle Cells I hate taking meds. Because of the brain damage I am on Keppra for seizures. Although I don’t remember having one but I was told I did (that’s another part I will go into later) also take Lupus medication to prevent my body from attacking me and my organs.
The seizure medicine had me feeling suicidal, extra depressed and very angry. I complained that these feelings were not natural to me and I knew deep down I wasn’t like that. They told me I have been through a lot and maybe that’s why, but I pressed on for a change. The meds were changed to a lower dose in November 2016…. Also, while in the hospital, the doctors told my family to let me go because I wouldn’t make it and if I did I would never read, walk, or be normal again. BUT God… and faith and prayers.
What are some of the biggest challenges of living with a chronic illness?
My immune system was compromised with having Sickle Cell, now it’s even more compromised with Lupus. I stay away from public places when I can. Thank God I was never really a club person… People are germ infested creeps to me, drinking and meds don’t mix. I lost friends, I don’t have energy like I used to, my self-esteem took a dive, my faith did too, I was constantly depressed.
What are some common misunderstandings about lupus?
Since my circle has SHRUNK tremendously; I couldn’t care less about people’s misunderstanding. Those who have stayed in my life understands fully what I go through when I say I am exhausted; they call, they visit, cook, clean and hang out with me to help me get out the funk. Everyone else … Well… Let me not use inappropriate words.
What advice would you give others battling lupus?
Others battling Lupus need a strong family system. Surround yourself with people who truly love and support you on your worst days; because some days you will have more bad days than good days. Many people only are there when you can help them, or they need a supply of what you have… Stay clear of them.
How has living with lupus affected your career?
Career wise, since losing my job as an Office Manager it was difficult to find something that would help me mentally and physically. Thank God I finished my Masters in Education because for right now I am a substitute teacher which was exactly what and where I needed to be. Now it’s time to move on, because of my short-term memory loss and the ability to comprehend as I used to, that may be difficult but I plan on being a certified teacher. Got accepted into the program so we will see how that works out. If not mentally I am at a better place to do something lower that suits my health. I am prepared to battle for my life… As I live by my creed Live Love Laugh Learn!
Andrea is the epitome of a warrior, she is fighting the good fight and not giving up. I stand with her and all my fellow warriors.