I know, what a title. Kind of morbid at best, but true. I am going to die someday. I learned to face what life holds for me early on. 20 years ago in fact. I am a realist, and I am this way. My family and friends absolutely can’t handle when I speak like this, however I think they too understand where I am coming from. Let’s go back to the beginning and then you, the reader, will understand why too.
It begins after my son was born. My son was a big surprise to me. Although I was thrilled to have a baby, I was just beginning to start my life. I had a full-time job and lived in an apartment. Once my son was born, my ex-husband began to pressure me about getting married. To be honest, I didn’t want to. Neither did I want to buy a house just yet. I just had this baby boy and I wasn’t ready for all of this commitment crashing in on me. I should have held firm in my intuition, but I didn’t. I totally caved. By the time I was 24-25 years old, I had an infant, a full time job, a house and got married. No stress right?
I made a decision at 24: No more kids for the time being. I discussed my options with my Ob/Gyn. He suggested Norplant. Birth control inserted in your arm. I thought, what a great idea. I didn’t have to take birth control pills anymore. No more hassle. So, I did the procedure (painless) and I was on my way of having no more children. I was very happy. Well, that’s when the hell really started for me. Six months into my Norplant excursion, I began to notice I was more tired than usual and that I felt a bit achy off and on. I attributed it to the fact that I was under an extreme amount of stress. Finally after much deliberation, I decided to have the Norplant removed. I had an inkling that once I had this removed, I would feel better. Back to the Ob/Gyn, and it was removed.
Guess what? I still felt like hell. Even worse, my bones started to burn. I have never felt like that before. To the point where one evening, I couldn’t walk without literally crying in pain. This was not normal. Not for a 25 year old female. The fatigue? It was absolutely disabling. I just wanted to sleep all the time, but I had a full time job. I felt like a zombie most of the time and with the aches and burning pain I was going through, I thought I was going to die. Finally, at my husbands urging, I called my doctor. He had been my physician since I was 14 years old. He took one look at me and said, something is very wrong. I have never seen you look like this, even with the flu. He immediately ran a battery of tests and referred me to a Rheumatologist. I have never had so much blood work done in my life. I was being tested for MS, Lyme’s Disease, Lou Gehrig’s Disease. You name it, I was being tested and I was terrified.
A week later, I had my first appointment with the Rheumatologist. I will tell you, this doctor was an asshole. Bedside way of a slug. However, he was a very smart asshole. He took one look at me and said, “you tested false positive for Syphilis.” I looked at him and said, “well, what in the hell does that mean?” His response, “It means, you have Systemic Lupus Erythematosus.” I had NO clue what that meant? Lupus? SLE? What is it? He went into a discussion that it was an auto-immune disorder. In other words, my body is attacking itself. It is in a constant state of inflammation. It will affect your joints, muscles, any type of organ that can have an inflammation response. I won’t die as long as my disease does not progress. He gave me a prescription for Plaquenil (anti-malarial) which controls the disease or keeps it at bay. When I was leaving he said one last thing to me. “Oh, I wouldn’t recommend ever getting pregnant in the future.” Thanks Doc for the words of encouragement.
Needless to say, this diagnosis put me in a whirlwind of anger, denial and overall sheer rage. My husband (who is now my ex for several reasons) could not have been ever so helpful. I am joking when I say that. The distancing began. He was ill-equipped for my symptoms, anger and overall state of mood. That same year, I had to have my tubes tied so I would not have any other children and you can just imagine what that did to my head. Total and complete mind fuck. I felt like a useless hag. Although I am eternally grateful to have my son in my life, I had always wanted more children. There was a lot going on in my household when this diagnosis and resultant fallout came. Although there is no excuse for it, I began a downward spiral of booze and NSAIDS Pain Killers mix. I lost 40 pounds and finally had to go to a 30 day outpatient rehab to get my life into some sort of control. To this day, I stay away from painkillers and NSAIDS at all costs. It’s just too easy to get back into the groove of bad lifestyle choices.
Speaking of bad lifestyle choices, we are fast forwarding to 1999. This was the year I divorced my ex-husband. Too much water underneath the bridge: Lupus, child with a disability, his cheating, you name it – I went through it. Once he was out of the house, I went a little nuts. I got married young, and went through a lot of hell. I decided to ignore my Lupus symptoms and it’s ravages on the body for about 10 years. Learned how to ride a motorcycle, lost 60 pounds (way too fast) in 4 months time, drank a lot (again), started smoking (still trying to quit), got 5 tattoos, sat out in the sun and used tanning beds (people with Lupus need to stay out of the sun), and became a total workaholic. I have figured out the reason I work so hard is so my company will not fire me and I can keep my health insurance. If I lost my health insurance, there is no carrier in the United States that would insure me. I am un-insurable.
My body is now showing the ravages of my stubborn Irish ignorance and abuse for the past 10 years. I have now developed a hypo-thyroid condition, arteriosclerosis, Raynaud’s Syndrome and I suspect Fibromyalgia as well. I suffer from a Lupus anti-coagulant that is dangerous. I can develop blood clots at anytime. These conditions have developed in the past 2 years alone. I am only 43 years old. Now I will tell you I regret not taking more care of myself, but I am not going to lie – I had fun. I refuse to apologize for having the fun I had and will continue to have in the future. I am a realist though, I could die when I am in my 90′s or I can kick the bucket when I am still quite young. That is why I show the fervor that I do for life in general. I am on this earth only once and I do refuse just to sit back and let this disease take over who I am, what I love and what I still want to do. I am not bitter about Lupus anymore. I consider myself a survivor of Lupus, because I am still here.