So where to start... A little about me first I guess... My name is Melissa. I am 32 (well I will be in 2 weeks). I have 4 awesome kids, ages 12, 10, 6, and 3. I have an amazing boyfriend, and a mostly wonderful family, who without, I would be utterly lost. They have been my strength through my darkest days.
My story starts around the time I was 14 or 15. I began getting achy and tired all the time. I would get up in the morning, take a shower, go to school, and sleep through most of my classes. I would come home, do whatever homework I had, take a nap until dinner, eat, then right back to bed for the night. At 16, throw in a job, and that was my life. This went on for years.
During that time, I was tested for mono, and a ton of other things, and everything came back normal. They said it was probably just depression. But for the most part I was happy, so I didn't understand how that was possible.
I had my first born when I was 19, and my second at 20. The aches and tiredness were always there, but for a few years, other than 2 short term rounds of anti-depressants for post-partum depression, I was able to cope without having to see a doc, or take any meds.
During that time, I lived in Tennessee. I was a GREAT mom. I was a total hands-on mom. Arts and crafts and learning activities everyday. I was VP of the parent committee for Head Start and I was my districts representative at all county Head Start meetings.
Fast forward to around age 25. I was back in Ohio, separated from my husband, and the aches and tiredness grew worse. Constant nausea, vomiting, and diarrhea daily were the norm for me. Pepto-Bismol, Imodium, and I became best friends (and still are to this day). I was told that I was a hypochondriac by my grandmother, who was an RN, because “nobody can be that sick, all the time.” I didn’t know what was wrong with me, but I knew there had to be something. But I had no insurance, so that meant just dealing with it as best I could.
I was still working mostly full time, I was my sons den leader for Cub Scouts, then I got pregnant for the last time. My youngest was born when I was 28. After she was born, I went through a really bad bout of depression for a few months. I was still working, but had to give up my position with Cub Scouts, because I just couldn’t handle it anymore, with the way I was always feeling. A few months later, I lost my job.
Shortly after that, my bf and I got together. I was the happiest I had been in a long time. But the aches and pains just kept getting worse, and my memory had started slipping. All I wanted to do was sleep.
My mom called me one day, and said she had been talking to a friend of hers who had been sick and thought that what her friend was describing, was what was wrong with me. She said it was called fibromyalgia. I had never heard of it before. But now, I had insurance, so I started thinking about who I wanted to go see. I found a residency program at Flower Hospital, and thought it would be better for me to see someone still learning, rather than someone who had been practicing medicine for years. I did not want to walk into an office and just from describing my symptoms, the doc give me a diagnosis and that be the end of it. I wanted someone who would be thorough.
At my first appointment, I told the doc what had been going on, but never mentioned what my mom had told me. I didn’t want to put any ideas in his head. I wanted his diagnosis to based on my symptoms and tests. He told me exactly what my mom had said. He thought that was what was wrong with me. There is a “trigger point” test that he ran on me that day. There are 18 areas on the body that he pressed on. In order to be diagnosed as having fibromyalgia, you must hit on at least 12. That day, I hit 11. He couldn’t officially diagnose me. He ran blood work to rule out anything else and referred me to a rheumatologist.
I saw the rheumatologist a few weeks later, and he officially diagnosed me. I tried all 3 FDA approved meds for fibromyalgia, Savella, Lyrica, and Cymbalta. The Savella and Lyrica did nothing for me. The Cymbalta was my miracle drug. Within the first week on it, I was feeling less pain and tenderness. But by the end of the second week, I started noticing bruises on my legs. By the time I saw my doc at week 3, my legs looked like I had been beaten. But it was only my legs. Nowhere else on my body did I have any bruising. It was a reaction to the Cymbalta, and I had to stop taking it. Which meant the pain came back.
From the very beginning I told my 2 doctors that I did not want narcotic pain meds. I wanted to try everything else I could first. I did not want to add an addiction to narcotics to what I already had to deal with. So I went on Tramadol and Flexaril (which if you‘ve ever been on these, you probably know they take the edge off the pain, but it doesn‘t last long), with an occasional injection of Toradol when the pain was intolerable.
I lost my insurance about a year ago. So that meant I could no longer see my doctors. Could no longer gets the meds I needed when I was really bad. So now I just deal with it day to day.
Some days are better than others, but more often than not, I am hurting. I don’t leave the house very often either. I have a hard time doing just about anything anymore. I have to force myself to do even the simplest things. I have no desire to do anything, because just to sit down or stand up, takes a lot for me. I put on a happy face when I can, but sometimes I can’t even do that.
I feel like a worthless mother to my youngest, who doesn’t get to experience what a normal childhood should be. Or to have the mom that her older brother and sister had when they were her age. I feel terrible that instead of the fun activities I did with them, that she just has to sit next to me on the couch and watch TV, or play in her room. I feel like a failure to my older two, because I can not be as involved in their lives as I know I should be.
I hate the fact that I cry all the time. That most days it is too hard to even put a smile on my face. That my kids have to live with a mom who feels like this all the time. I hope and pray that they do not have to ever experience this.
I feel like I’ve written too much… so I will leave it at that for now. If anyone has any questions, or comments, please feel free to let me know. And thanks for reading my story.
No comments:
Post a Comment