One of my brothers requested that I write a piece about my illness and about how my art, writing, and music have affected it. This is dedicated to my brother Nick, who is my number one fan.
With love, from your little sister. Enjoy :)
When I was a little kid I had a normal childhood. I spent the weekends south of New Underwood, SD at my grandparents farm. I spent numerous hours out playing in the sun, getting callouses on my fee from walking bare foot on the long gravel driveway.
I spent a lot of time playing in the barn with the cats and their newborn kittens or riding the makeshift horsey that grandpa had made out of an old metal barrel, hung with heavy from the rafters, and added a horse saddle to.
When I got older and stronger I would go out in the spring and help get the new calves grandpa purchased into the branding shoot. I can't even count how many times my ribs got bruised and possibly cracked from getting kicked. Or how many times I had to wash my hair from my uncles having fun throwing fresh rocky mountain oysters at me. I use to thank god after an afternoon of branding for making me just the right size to slide grandpas overalls over my clothes.
The years went by and suddenly anytime I tried to exert myself I would feel sick. By middles school I was missing one day of school about every two weeks. I didn't know what was wrong with me. The doctor couldn't figure it out what was causing it, but it was like my immune system was shutting down. There were no systems or tests to prove if it was an immune system disorder or not.
By time high school came I was missing on average of 1-2 days of school a week. To this day I am amazed that I even graduated. I went off to tech school after that. While there I would get so sick that I'd have to go home very often. It was like the flu. The doctor was still stumped and wasn't sure what to do.
After I graduated tech school I took a full time job at the local Sam's Club working in the cafe. Almost every time I had to go in and out of the freezer my back would start to hurt. At the time I figured that it was just the hard work that was doing it. After about a year of this I started getting sick to the point of vomiting from the pain and would have such major migraines that I could hardly see anything other than black spots. My co-workers had to sit me down in the steel in the back and would keep an eye on me in fear that I might pass out. My allergies would get so bad that I couldn't hardly breathe. I had allergy testing done and discovered that I have become allergic to cats, horses, cows, weeds, and many other things. The allergy meds helped with the headaches a little bit, but I still knew that something was wrong. Eventually I realized that something was wrong. I didn't know what it was, but I knew that the combination of the drama caused by an ex roommate and n ex boyfriend, combined with the aches and pains that I needed to leave.
A friend of mine helped me get a job at a call center. At this point my doctor had retired and I had to find a new one. The sickness and pain just kept on coming even though I was no longer doing hard work anymore. Eventually this doctor figured that I'm a hypochondriac and wouldn't help me.
I kept on doing the best I could and kept on looking for someone who would know what to do, but I couldn't find anyone.
November 29th, 2008 I went with some of my co-workers to the funeral of a close friends father. I knew him and it was a very sad occasion. He loved peppermint patties and there were some sitting out for the guests if they wanted one. I opened one and ate it, remembering how the few times I had seen my friend's father he had always had candy in his pocket.
The next morning I woke up and could barely move. I had to crawl to the bathroom anytime I needed to go. The rest of the day was spent in bed in so much pain that I was dizzy. I called my mom and told her what was happening.
Ironically a few days before my boyfriend at the time thought that he may have chronic fatigue syndrome and had printed out a sheet about it. He brought it to me in bed and asked if I thought he may have it. I read through the list of symptoms and realized that it sounded like everything I had recently experienced.
October 1, 2008 My life changed forever. My mom came and helped me up to the Urgent Care clinic. There I was seen by a PA named Debra. My mom handed her the sheet about Chronic Fatigue Syndrome. Deb carefully looked over it and asked for some time to look through my medical records. She noticed the severe allergies, the constant illnesses, and a number of other things. Deb smiled at me and said "Boy I'm glad you got to see me. I'm surprised no one else has caught this before. I'm pretty sure I know what is wrong." Deb asked me to lay down on the table and started poking my arms and around my collar bone. I yipped in pain. then she asked me to sit on a stool and repeated the process on the back side.
When Debra was done she asked my mom if when I was little if I had growing pains so bad that I couldn't sleep. My mom told her yes. At that time I instantly remembered. I use to wake up in the middle of the night screaming and I'd wake up everyone in the house.
Debra said she had to go get some paperwork and some samples and she left the room. My mom and I sat in silence not sure what to think.
Minutes later Debra came back and handed my mom a handful of papers. She took a business card out of her pocket and wrote something on the back. The suspense was killing me.
Finally Debra addressed me. "Melissa, the reason you are so lucky you got to see is that I have exactly what you have. It seems you have had since you were a little kid. Sometimes it doesn't show up until you get older. I am almost positive that the peppermint patty you ate at that funeral is what set it off making it easier to catch. Melissa, you have Fibromyalgia, Chronic Fatigue Syndrome, and hyperglecemia."
She handed me the card. "On the backside of that card is my email address in case you have questions or need help. I have also written down a website that tells you about the treatment plan I am on. I think this treatment will work for you.
When I got home that day and took the samples that I was suppose to my mom and I began reading the stack of papers Debra had given us and we went to the website and checked out the information about Fibromyalgia. When we were done we went through all of my personal hygiene products and threw everything away that had ingredients on the list of products that make the Fibromyalgia worse. After we were done about an hour later at most we went to the nearest drug store and filled the prescriptions that Debra had given me and carefully picked out products that were safe to use. We also picked up a bunch of Mucinex since the treatment called for the use of Guaifenisen every day.
Over the next six months I struggled with the Mucinex trying to figure out what dose I was suppose to take. If it was too high my the Fibromyalgia would make me bedridden. If the dosage was too low I was so miserable that I wouldn't want to do anything. Finally after awhile we realized that Both doses were wrong. I needed an extremely high dosage of the Mucinex. Mucinex helps break up the build up of phosphate in your muscles that trigger the nerve pain. Slowly I started to feel better. Then I would get bad. Then I would get better again.
To this day I still have to take Mucinex and watch what I put on my skin, but generally I feel pretty good most of the time. For the most part I don't get sick all the time either.
One day I was listening the Green Day in my car while driving to work. The song "Wake me up when September ends" began to play. I listened carefully to the words and it dawned on me that if I had a theme song that would be it. It was basically the story of my life. I was dead, or asleep and wasn't really "here" where I should be. Then when September ended I woke up.
I am one of those people that believe everyone always gets a second chance at life some point or another in their lives. I realized that my diagnoses and recovery process was mine.
To this day I thank god for the peppermint patty that gave me my second chance. I am still at the beginning point of my second chance and so far the future is looking brighter every day. Slowly I keep getting better. This last April I left my old job and got a new one that is less stressful. Now I feel like I am actually getting my life back. Granted I won't be able to walk barefoot anymore. I won't be able to play in the dirt or help with cattle branding or play with cats anymore. I tell you what though; it doesn't bother me.
I can now go out with my friends more. I can actually clean my house and not feel like I'm going to die. I can see my family on a regular basis and not feel out of place for being a party pooper.Any time I start to feel down or like fate had drawn me a shitty hand in life I just remember "Wake me up when September ends" by Green Day. Sometimes I will listen to it over and over again. Every time I do I remember that God gave me a second chance. It invigorates me. It gives me strength to continue. That is exactly what I do. I continue living on. I share my illness openly since so little is known about it and many people don't understand it. I feel that this is part of my second chance. It is now my mission in life. Who cares about having a great paying job, or having fancy things. Not me. All I want is to continue living my second chance. My friends and family are the most important to me. They give me support when needed and believe in me.
Since 2008 I have been writing a book. It is a very sci-fi type book that is based off of a series of dreams that go back to back with each other. This was during the time I was adjusting and finding medications that work for me. I had these dreams for about 6 months and remember all the little details. My life goal is to eventually get all 10 notebooks full of information typed up into the book. Eventually I will get there. I have the drive. So far there is about 200 pages typed in. It may end up having to be more than one book. So far I'm not sure.
Someday I hope to get this book published. If I can accomplish this goal I am going to donate a certain percentage of the proceeds to the Fibroymaglia Treatment Research program to help others just like me. I also try to express my pain and life lessons in artwork. My goal with that is to someday have them displayed as a sign to the world that pain is real everyone suffers from it. Sometimes it is hard for others to understand an invisible illness regardless of what it is. I want to prove that some people are just glad for what they have.
I live in my own place. I have a loving caring boyfriend with a 2 year old daughter who are my immediate family. The little one calls me momma. I have loving and affectionate parents who help me out. I have two brothers, a sister-in-law, and two nieces who help me when they can. Sometimes its just helping me with my car, or doing something around the house. I have friends who will do my dishes or give me a ride if I am doing not so well and can't drive. I have co-workers who worry and make sure that I don't need any assistance.
I am very thankful for everyone in my life and am very lucky. I belong to an online support group for Fibromyalgia and Chronic Fatigue Syndrome. Many of the ladies in my group are divorced because there spouses didn't want to deal with them. Some of them have been disowned by their children or parents because they think that Fibromyalgia isn't real. Some of them have more than one medical issue and are on permanent disability. Others were homeless and had to sleep on a different friends couch every night until they could get income fixed housing with their disability. I appreciate everyone in my life because of my online support group buddies. Many of them are the reason I have decided to try to dedicate my life to making people aware of Fibromyalgia and what it is.
Sometimes I offend people or they think I'm full of it, but I don't really care. Planting the seed of understanding is all I seek.
Any time life throws a rock at you remember to "Be a rock and not to roll" and that "A new day will dawn for those who stand long." Sometimes a wakeup call like "Wake me up when September ends" is required to help you find reason and point living. Make the best of a situation and find your silver lining.
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