My Story: Part 1- Signs and Symptoms

One of the most common things I hear in the lupus community is that it took a very long time to reach a diagnosis. Patients with lupus have very vague symptoms which can also mimic other diseases. If you’ve ever watched the show “House, M.D.”, you know lupus is almost always on the differential. We suffer through multiple tests and treatments searching for an answer. You would think as a doctor, someone with experience diagnosing patients, that I would have been able to interpret my own signs and symptoms. But, alas, I could not.

My symptoms began most likely a year or so before I was officially diagnosed. I say most likely, because I am not sure. The symptoms I had were mild and transient so I never paid much attention to them. Things didn’t start to become noticeable until my second year of residency. It had started out with knee pain. The pain was quite strong, but I was still able to walk if I wore a soft knee brace and popped a couple Aleves. I consulted with the orthopedic residents, and although they could feel a little crepitus (crackling), they couldn’t find anything specific. They said maybe I hurt myself at the gym, and we left it at that.

The next thing I started to notice was the pain in both my wrists. Being a physician, I was constantly writing or typing notes and orders, so I figured I had carpel tunnel syndrome. I bought a couple wrist braces, more NSAIDs and called it a day. I also was very fatigued, but doesn’t every resident feel that way? We run around all day, up and down stairs, pushing patient’s beds, working overnight and twenty-four hour shifts, and then coming home to study or work on power point presentations. I mean just writing about it makes me tired.

And then it was the hair loss, but I didn’t actually pick up on it. My landlady had hired a cleaning lady, and when the cleaning lady quit, she would come down and clean my basement apartment. She would get upset about the amount of hair on the floor and clogging the shower. But doesn’t stress cause your hair to fall out? And residency was definitely stressful.

Then things really started to spin out of control. On my vacation to California, I started to feel a lot more joint pain. It was in my knee, and my wrists, and now in my toes. I could hardly walk when we were sightseeing, holding back the tour groups we were in. I told myself I would get it checked out when I got back, but I knew I’d be too busy to.

A week after I got back, I started developing swelling in my face. I thought I was allergic to my boyfriend’s cat. I took Benadryl but it continued to get worse. I was too embarrassed to go to work looking like the Marshmallow Man. My vanity finally brought me to the doctor’s office.

My boyfriend took the day off and drove me to the office, since I could barely see through my puffy cheeks. The doctor took some urine and blood, and started me on prednisone for my “allergic reaction”.  I didn’t know it then, but my life was about to change completely.

4 thoughts on “My Story: Part 1- Signs and Symptoms

  1. In 1999 my mother had a stroke at work she was nurse. After her stroke her body stared to do strange thing’s. So the doctors started do test but because lupus is so hard to diagnose it took a long time to finally come to the conclusion that it was lupus. She had a sore they biopsied then they found out it was lupus And yes that is when the battle began.
    she went from a hard working nurse wife mother and grandmother to a women who was so tired at times she could not get out of bed . But she did not look sick so most people did not seem to think she was really sick. As time went by she was in and out of the hospital to many times to count her hair fell out she had sores all over her skin she was always sick with something.
    The time came that she had to stop working it was sad because she loved her work so much she loved helping sick people and it broke her heart to stop But it had to. After that things got even worse so 8 years into this disease I started taking care of her she had a basket of med’s a mile high. And she needed help with shower changing her from time to time begging her to eat as she was losing weight fast. But she was my mother she had taken care of me my whole life and she was my best friend.
    In the end my step father came to me and said he was never home and I needed to either come live with them and take care of her or take her home with me or we would put her in a nursing home. Although I worked and had been kidney disease what my father died from I brought her home. by now her minds was going because of the drug’s and the illness. So I took care of her and im glad I did because I got to be apart of the last day’s of and amazing women’s life. But I will say my body was hurting I was tired but there was no time to think of me only her and all I had to do. 2 years ago today after a 12 year long fight I held that amazing women’s hand as she took her last breath she was free now no more pain no more lonely days as the world went on with there life and she could no longer keep up Just peace for her which she had begged for as much as it hurt I had to move on she is in my heart always.
    Now it was time to deal with my kidney’s problems that I believed I had gotten from my father but they could not figure out why my kidney’s where going bad. And after two year almost three I got a sore I had lupus to as I took care of her I suffered from the same thing just did not know it. After taking care of my with lupus knowing what is to come I am not sure if that part is a blessing or a curse but I would not change it for anything. My story is still being told but now her story has been told and may help someone else. God bless all who have this Mysterious diseases I pray this helps someone and it helped me some to tell it.

    Rachel Doyle and my mother Lottie stone

    1. Thank you so much for sharing your amazing story. Your mom seems like an incredible woman and I can see your strength in caring for her. Keep sharing and keep strong. Your story touches others.

    2. you’re an AMAZING woman with a courage and strength that I deeply admire puddin’ and I have no doubt your mother is greatly missed Ty for sharing there is healing in sharing our stories as they provide inspiration to others

Leave a Reply

Your email address will not be published. Required fields are marked *