My Daily Struggles
I began with fatigue and pain right after my son was born, and my doctor told me it was postpartum depression and started medicine for it. And since I was depressed, the roller coaster of my emotions was horrible, he wouldn't listen.
My husband stood by my side, but I have recently learned he thinks I use it as an excuse, basically that I am lying when Lupus rears its head. I lost all my family, including my 13-year-old twin daughters who won't speak to me to this day, and one had a baby girl, and since they call me Brandi (and not Mom), no hope for the future.
A diagnosis took seven years
The seven years it took to get a diagnosis was a nightmare, but I had fired my original doctor insisting I was suffering from postpartum depression and changing my meds until I said, "no more, for heaven's sake." I cut my grass with scissors I was so manic. I knew something else was wrong, and I am a nurse, and had never really heard of Lupus or knew anything about it, except from a movie. And it was a death sentence in the movie, so it was a complete conundrum.
Finding a good doctor
I found another primary doctor who I have to this day, who believed me, and was not quitting until we had answers and a diagnosis. I ended up in ICU literally a day tops away from dying. I had over 40 blood clots in my lungs. In my right lung (I almost lost it) I was so sick, but I just couldn't go to the hospital earlier. They treated me as a drug seeker or mentally insane and didn't take me seriously. Also I couldn't drive by the time I decided to go.
Shortness of breath
I couldn't breathe. You see, I had been having chest pain all day but I was out with all three of my kids, and my twin girls were absolutely awful and really pushing my buttons, so I thought that was the problem. So my husband was working his second job, and I refused to call an ambulance because I really didn't think it was anything, and didn't want to waste their time. Plus, I needed a pop (Diet Mountain Dew to be specific). I live on it, plus mouth breathing from the pain and shortness of breath from the clots. I almost went to bed. I would have died before morning.
Getting answers in the emergency room
So my husband came home and took me to the ER which I hated, but I couldn't breathe at all and my heart was beating at 160 at rest. Any movement shot it up to over 200. They started Heparin before any actual diagnosis or CT scan to confirm it. I was so happy it was serious and they didn't blow me off for once.
My savior, a specialist, knew what it was before the blood work confirmed it, and I was so excited because I had just the day before cried to my husband that I was gonna die without a diagnosis, and it will be just a bunch of crap that I lied, as well as was nuts, or on drugs, which my entire family (except my husband) turned away from me, and to this day they are not in my life.
My husband has even turned from me and my 16 year old son because he doesn't understand this damn disease, and my husband even has said I use it as an excuse and are just mean and lazy.
Daily housework challenges
I am living my own nightmare of a life, and fighting, and I struggle to find reasons to keep going and force myself to get out of bed. No one lifts a finger around the house, nor will they even make a meal now. I make their plates and give them to them and no one even asks me if I need it brought to me, or if I need a drink. Nope, I am a servant to the people in this house and that's all. However, I was homeless once before when I left my home.
I forgot, my mother-in-law lives here and I wait on her lazy butt hand and foot. She literally does nothing and there is nothing wrong with her. It is truly sickening, she has mild arthritis, she needs to move to feel better and won't I do everything in this house from cleaning to cooking and laundry. I even put it all away. I take the garbage out and my son's chores since he has a job now, so it gets done. He does it halfway and never completes it all and I have to do it anyway.
Changes to home and work
This disease has taken my career as a damn good trauma critical care nurse in the ER. I saved lives or held hands at the end of their life. I made a difference. I was good, seriously, I saved lives and left impressions on all my patients.
I had a home and a big yard fenced in for my dogs and Lupus took it all away. My family and friends were so important to me. Now I am alone and don't understand why. I lived the first day I was diagnosed and three other times.
Coping with loss
My purpose on this earth is non-existent to me and frustrating as heck. I struggle with my life and all my loss and where I am, and keep it to myself. No one cares what I feel or if I need help. It is my job, as I was told.
So anyway I wish I could say I am a fighter, a warrior, and fight to live, however I do not. And I keep asking, "why me? And what is my purpose here?" and silence is all I get.
Thank you for reading my story.
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