Finding My New "Normal"

    OK, I have fibromyalgia... Now what?
   Growing up, I became accustomed to the "American dream." You work your ass off, make big purchases, and become proud of everything you own. Becoming ill, it was hard to wash my own hair, and I was a licensed cosmetologist! I became very depressed, guilty, and ashamed... I felt like I let everyone down, including myself. As a hair stylist, I won a national competition, just a year my diagnosis. My husband and I were flown to as Vegas so I could accept my award. Everything was paid for, even the 3 day stay at the Mirage. While there I attended conferences and workshops, learning the  in's and out's of running salons. I was so proud of myself, and then life decided I needed to make a U-turn. At my support group, i learned a lot. I noticed the other members still had some quality of life. Although I was at least 15-20 years younger than everyone else, I became close friends with a few members. They taught me that I could still enjoy life, but the first thing that I needed to accept, was that I will not be able to do everything the way I used to. My life before Fibro, was multitasking every moment, while accomplishing everything on my 3 page to-do list! That was my normal, I attached "being busy" to meaning "successful." Once I could, and my husband could convince myself to let go of the list, I started to see what i was capable of. I began to see that, getting dressed could = success! I learned to not plan anything after a small grocery trip, otherwise I would be too wiped out to make dinner for the kids.


     Lutina, my close friend with fibro, made a great analogy for our energy and symptoms. Our bodies have become like the vehicles we drive, with better oil and fluids the better they run, just like we need better foods and water. But also, they require a tank for fuel, we watch the gauge to judge how far we can travel. If we drive through town, speeding between stop lights and stopping at multiple locations, our fuel wont get much mileage. If we think "just one more stop," and spend our last dime, we go for the ignition but nothing happens. No fuel means no more energy, while also causing damage to the motor when we drive on E all the time. We could have spent the day on the highway, or only made a few stops, and would have some fuel left to get back home.

   I had to learn to pay attention to my "gauge." Fuel tanks are not a one size fits all, others with the same diagnosis can have 8 gallon tanks or 2 gallons, and some of us are half empty or barely a quarter full. I know that if i use too much fuel, that i might be broke down for a few days. Paying attention to myself was foreign, and at first it felt so selfish, but i learned quickly how important it was. I didn't want our kids to lose their mommy, so i payed attention to how much fuel would be required for each task during the day and included time to rest before they got home from school. Soon I realized that I had found my new "normal." I stopped making pages of to-do lists, I asked for more help, and realized that my body isn't the same as it was. Although some symptoms come and go, I know to pay attention, and not over do it on the good days. My old "normal" would cause me to push past breaking points to feel worthy. With  my new "normal" I've become more grateful and patient with myself.

   Thanks for reading my journey! Have you read the "Spoon theory?" do you have another interesting way to explain your "tank" to others? Let me know in the comments below!

But... I cant be sick, I dont have time for that!

 (Warning: Not a professional writer, the following  might include incorrect or missing grammar, have some patience with me please!)
May 2010
   Already fatigued from our newborn and two boys, the exhaustion made me question my sanity! I didn't have time to be tired! I had been home for 6 weeks, and we couldn't afford anymore time, I was back to work as a hairstylist. I loved doing hair, had great clients, and was excited to show off baby pictures. With each appointment I noticed my train of thought was really foggy, keeping up conversation was really difficult. I dismissed it and tried joking about having a "mommy brain." But I was really concerned, and would have nervous break downs between appointments. I couldn't shake this feeling something more was going on, I felt so heavy and sore, but I appeared to be fine.
  

p.s. not mine.

    I sat down one of my regulars for a blow dry, and I remember feeling nervous, as if I wasn't going to be able to push through the pain. I had pain in my neck and shoulders, as most busy stylists, but this pain had seemed to radiate and expand down my arms. At 120 pounds, it was odd to feel as if my arms were 50 pounds each, and to grab my blow dryer it felt like it was made from concrete! I confirmed with myself that I am just being a wimp and need to push through and it will get easier. It didn't, it got worse, pain began shooting through my wrists down my forearms and my hands gave out. Dropping my blow dryer, I knew I couldn't finish, I apologized and asked another stylist to finish for me. I needed to go get checked out, and I clocked out.
   The Dr. says "you have tennis elbow and need to rest for 4-6 weeks, and take these prednisone." I was in shock, how could I have tennis elbows when I just started working again? Seriously, 4-6 weeks? Now I wasn't able to pick up our kids, or carry the baby around,  or work. My husband was confused as well, but knew I wasn't one to not work. I always pushed through, no excuses, and I loved what I did. The prednisone worked until I was done taking it, so I got another opinion. Now I had pain in my hips, my thighs, even my skin hurt to be touched. Every Dr. had blood work done, nothing irregular showed up. I went to the hospital and they gave me a cortisone shot, at this point it was hard to walk, especially with my menstrual cycle. The Dr in the ER mentioned to me that I might have fibromyalgia. By then I had googled my symptoms and read about it, but there's no cure, I didn't want that diagnosis. I expected I would find a Dr who would say "Ah Ha! here's a pill!" and I'd be back to work, and able to take care of my children.

    So many doctors turned me away, as soon as I mentioned pain. I fitted their "druggie" profile, young/pain/colored hair/healthy bloodwork, no matter how well I dressed and explained I had a family I needed to support, they looked the other way. At the time in Florida doctors were getting caught writing false scripts for pain medications, and patients were going to multiple doctors getting the same pain prescriptions from each one. So I understood, but I became increasingly frustrated. One doctor told me I just simply had post pardon depression, and that the pain was a symptom of the depression. I was in tears, I told the lady that it was normal for someone in pain to become depressed. There was a pain doctor, who looked at me after I waited an hour and a half, and asked "what do u want me to do? give injections all over your body?"

http://www.uspharmacist.com/content/c/15684/

   Two years of different doctors, and bottles of muscle relaxers/ anti psychotics/ anti depressants, blood work/ MRI's/X-ray's/ a terrible spinal tap, I finally met a doctor who understood fibromyalgia. He was the fourth doctor to diagnose me, and he was also the second neurologist I had. He had me do all of the testing again for him which included EEG, nerve conduction testing in my arms and in my spine, as well as Mri's and another spinal tap. Everything was clear except a mild scoliosis, carpal tunnel of the wrists and elbows, and I had difficulty with comprehension because of my fatigue. He mentioned to me that he had 2 other  fibromyalgia patients and they did well on 2 pain medications and a medication for ADHD to help with Fatigue. I was running out of pills to try, and desperate for relief, so I agreed.


   The pharmacists, were also in trouble for filling all of those false prescriptions, as well some of them were cutting the patients amount and pocketing the extras. My file I'm sure it looked suspicious, over three years 15 different prescribing doctors, and a medication history list of hundreds of pills. Don't forget, I already fit the "profile" of the local drug addicts, and now I'm being prescribed schedule 1 substances.   They ask me,"What are you diagnosed?" "it will be awhile, we have to call the DEA first," " We have this one, but not the other two." So if they don't have them, they are not aloud to tell me when they will, or if they have them at another location. I have to physically drive store to store, listen to them talk down to me, and just smile while in so much pain and fatigue. I feel as if I'm doing something wrong just getting my prescriptions filled. They also can't let anyone else but me drop off and pick up. My mom took me to a lot of my appointments and they wouldn't even let her drop off my prescription. Also, since it is a schedule 1 substances the Dr cannot call then in, I had to go in every month to get my written prescriptions.

  Besides the doctors and pharmacys, life was difficult. I gave up trying to get people to take me seriously. I could barely believe it myself, my list of symptoms with zero abnormal test results, sounded like I was a hypochondriac. It was hard on our marriage when I became increasingly unable to take care of myself. I found a Fibromyalgia support group in our town, and my mother dragged me in there. I didn't want to believe it, but as I listened to the other members describe their symptoms and frustrations, tears of pain and joy poured out as I realized I wasn't crazy, It wasn't all in my head. Fibromyalgia is real.
Have you been diagnosed, or know someone with a similar story? Leave a comment or a question, I look forward to your feedback!