Two years ago, my life changed in a drastic way. I was young, energetic, and a very active parent of three children. I began to feel tired, achy, and kind of depressed. But who doesn't? I mean, these feelings were not the norm and so I thought that the wear and tear of marriage and motherhood, working, and the busyness of life were just kind of getting to me. I had reached my thirties, which according to my mom, is when everything changes. (Whatever that means.) So imagine my surprise when one doctor visit and three surgeries later, I was told that I was chronically ill.
My first doctor's visit was for my yearly check-up. I answered all the questions in a routine way, but stated off-hand that I had been experiencing some back pain and fatigue. Thankfully, I had a doctor who knew me well enough to know that I was proud of being the energizer bunny and that laying in bed for a day or two (not by choice) was not my style. So, he suggested that we run some tests--just to be sure that everything was fine. An MRI and an ultrasound later, we discovered that I had endemetriosis which is not all that uncommon. However, my endemetriosis cells had spread to my bladder which was causing some pain (that was increasing daily) and was the source of some minor concern. We decided to have a minor surgery to scrape away the endemetriosis cells and we felt confident that the surgery would be enough to handle everything. Three weeks later, I was unable to walk. The pain was so intense! If I were lying down and someone sat on the bed, the burning pain would radiate through my entire body.
Next course of action: hysterectomy. Granted I was young, but I was blessed with three beautiful and healthy children who just wanted their mom back, not the cranky and sickly woman who stared at them from her bed who had replaced her. At first, the hysterectomy seemed to work. Two months later, I was back in bed, in more pain, and dehydrated. This time, I was sent to a urologist who diagnosed me, after yet another surgery and some tests, with interstitial cystitis--a painful bladder condition in which the lining of the bladder kind of. . .disappears, I guess. Not really, but it become full of tiny holes which is quite painful. According to the urologist, I have probably had this condition for the past ten to fifteen years. At my age, I was the most severe patient that he had! I had weekly treatments in the doctor's office for six weeks, followed by weekly or twice weekly treatments at home for about six months. I was on thirteen different medications to try to get my body to stop attacking my bladder. In any given month, I can have three to four unrinary and/or bladder infections. Kidney infections require hospitalization.
When after all of this I was still experiencing pain and still not able to walk without hunching over, I was send to a rheumatologist. This doctor diagnosed me with fibromyalgia which is a chronic pain disorder where muscles and nerves ache as if you have been working out for days. Together, these three doctors created a treatment plan that has aleviated some of the pain, and has allowed me to maintain some of the normalcy of my life.
However, many people can not comprehend the frustrations that I experience on a daily basis. Just walking around my neighborhood, which I do for exercise, can sometimes leave me in such pain that it feels like it is hardly worth it. Playing with my children can leave me exhausted for days at a time. And as for physical relations with my husband? We won't even go there!
My illness has been the most stressful thing that my husband and I have ever experienced in our fourteen year marriage. It is hard for people to understand the struggles within our marriage because these conditions are not well known nor are they life-threatening. But they are life-changing for me and for my entire family.
A couple of months ago, we were invited to spend an evening with another family. We really liked this family and wanted to get to know them better. The adults would have dinner and discussion, while our children would play video games and jump on the trampoline. The day before our dinner party, my body became was overcome with pain--shooting pains from my neck down to my spine. My arms felt like dead weights and I could not even hold a glass of water. I didn't know what triggered it, but I was not able to move. I had a prescription of Loratab and Fentanyl patches for pain, but they were not working. My husband tried to massage my back and neck, but my muscles were tight and hard, as if frozen. Although, I begged him not to, my husband called our hosts and cancelled. Because these were nice people, they decided to bring dinner to our house so that I would not have to worry about feeding the children. Full of concern, the couple asked to see me. I was laying in bed with a neck massager and while watching a movie. They didn't say it at the time, but the look on their faces was a look that spoke volumes. They believed that we had lied about being sick, so that we could just stay home. I explained my conditions to them, although they did not understand any of them. After listening to me and my husband, the couple replied, "But you look so good! Are you sure this isn't all in your mind?"
Now, I would be lying if I said that it was the first time I had heard such a statement. Well-intentioned people at our church, my school, my community, and even members of my extended family, had suggested the same thing: that I was a little depressed and that depression could cause you to believe that you were really in physical pain. But I wasn't depressed! I was in real pain the majority of the time. I actually took my pain medication less than I needed it because I was afraid that I would form some kind of addiction--and because it really didn't help that much. I cannot begin to tell you how hurtful it was (and still is) for people to dismiss the way that I felt.
Well, it's been two years, and I am still experiencing a good bit of pain on a daily basis. I still use the pain patches and have a monthly supply of pain medications that I rarely use (though we are down from thirteen to about five or six). Why? Because I know that these conditions will be with me for the rest of my life, and I cannot medicate them away. After walking with a cane for thirteen months, I began to walk around my neighborhood more and I joined a gym. I work out with a personal trainer and have lost about thirty pounds. More importantly, I am a lot stronger than I was two years ago. Some days (weeks) I cannot make it to the gym and I get frustrated. I just wait until the episode (period of extreme illness) is over and try to get back to life. I still don't look sick which is okay with me. When I can just get to the point where I don't feel sick, that will be even better.