At 15, my knees would start popping every time I moved. It was uncomfortable but not unbearable. I went to physical therapy, and they could not figure out what was wrong. I was told that it was all in my head. That was the first and not the last time I heard from doctors or physicians that this is all in my head.
Fast forward to me joining the Air Force. I was tired all the time and seemed to be sick all the time. I had my son at 20, and that was when my life started to crash down and continues to crash. It started with severe muscle spasms where I would feel paralyzed for a good 30 seconds. After tests and MRI’s, there was nothing wrong. My daughter was born when I was 22 years old. That November I would start running high fevers of 104, 105, etc. I had my butterfly rash. I thought I overcame it when January rolled around, and I seemed to be much better. I played it off, thinking it was just a virus.
At 24 years old, I started noticing the severity of my fatigue. Then around Thanksgiving, right after I turned 25, I felt like I had the flu. I was very achy and tired with more and more back pain. That was when my blood was drawn every other month, if not more. I saw a rheumatologist who played it off as possible fibromyalgia and said to keep exercising. Then my joints started to swell, first my wrists and fingers, then my knees and my feet and toes. For a good year I could not walk. I would have to crawl up the stairs just to go to bed where I was stuck for about a year. I had a hysterectomy, and I was able to walk again. The doctors and I thought, wow, how can endometriosis cause me not to walk but, yay, I was up and moving around again. But my joint pain never left me. My face is so swollen with sunken eyes, and I have trouble holding silverware, typing, cleaning, living. I have seen a total of 3 rheumatologist, all with no explanations. My heart rate at rest is 124, my blood pressure between 140 to 170, over 95 to 105. I am very dizzy, and I tell my husband to come and check on me at work if he has not heard from me to make sure I am alive. I live in fear every single day ,not knowing how I am going to feel. I go to bed in pain and wake up in pain. I have migraines almost daily now (my first at only 5 years old). I feel like I have robbed my children of a good mother. I have been asked by my 7-year-old when am I going to get better. Why can’t I open doors or tie his shoes? I am writing this, hoping that someone can bring me comfort and make me not feel so alone. If it is not lupus, then please tell me what your thoughts are. Thank you for taking the time to read this.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.