Well the week started off ok. I woke up with very little pain and little more energy then usual. As each progressed the pain began to set in and the fatigue got worse. I tried my best to be there for the boys while they were celebrating the end of the school. I know Albuquerque like the back of my hand and can give someone directions from anywhere, yet thursday I was so lost I had to pull over and cry because I had no idea where I was or what direction I was suppose to go in. I am always the one that can stop regroup quickly and get things going. So I said a prayer, took a deep breathe and made it through. I figured out that if I keep myself busy I don't think of the pain too much, I don't dwell on the fatigue as much. If I keep moving I can make it most of the time.
It made my week when I was able to watch Gabe get his award and graduate from the DARE program. And it was great sitting with friends watching the baseball team swim and get their trophies. The little ones were just really enjoying themselves and it meant so much to watch them.
I really went through a down time this week though. I went through a few days of crying uncontrolably, anger, and a lot of fear. I am so scared we won't raise the money to go see the specialist in NYC. I want answers, I want to raise awareness. I see all over the internet people that are suffering the way I am. Their doctors can't seem to find the right medications to get the disease uncontrol. I don't want to be a stastic, someone who loses the battle, falls through the cracks.
I have hopes to see my kids make their dreams come true. I want to play with them, share my life with them, I want to watch them do things in their lives that they have their hearts set on. I want to hold them when they are sick, crying, having a hard day. I want to comfort and encourage them when life doesn't seem to go their way. I want to be there to talk to them when they need me. I want to be a shoulder they can cry, arms they can wrap themselves in when they need a hug. I want to run with them, exercise with them, go on a hike, a bike ride, or even play the WII. I want to be there. I want to be there as me the real me, the fun loving, caring, funny, fighter who doesn't let anything take her down for long. I want to jump on a tramploine with my kids, wrestle with my kids, play mud kickball, go swimming, ride on rides at an amusement park. The kids want to start saving money so we can take a vacation ever year to go to a different waterpark each year. These are things I would love to do.
I have so much in my life that I want to accomplish. I have dreams that I want to make come true. I want to finish my degree, start a career, and use my degree, career and the life I have been through to help others beat this disease and make their dreams come true. I want to bring to what seems like a hopeless situation and disease.
I want to jump on a motorcycle and take a ride with my girls. I want to jump into a Mustang and take a long ride to clear my head. I want to see places in this world. I want to experience things. I want to touch people's lives. I want to make a legacy.
I don't want my life to center to around pain, fatigue, the next flare up, or complication. I hate taking 18 to 25 pills a day. I know it sounds like im whining and saying I want, I want, I want. But seriously when take for granted what you have and now its gone you want it back. I know I can get my life. There hasn't been a death sentence passed down on me. But the suffering and torment is just as bad. you seem to exist. You don't live, you dream, you don't get to just go try things. Life just is. I want more.
Monday, May 30, 2011
Sunday, May 22, 2011
From the beginning of my disease
I can honestly say I always had this feeling something was wrong with me but I just didn't know what it was. Looking back now I can see when the symptoms first started showing up in my life. The symptoms were few and far between the time I was a child until I got pregnant with my first child. I can remember getting really sick when I was a child somewhat frequently. They as I got older and began developing into a woman I started with a heavy cycle, really tired and could barely stay awake the week before I started. ( I know not exactly what people want to hear but its relevant). I remember when I was 17 I was giving my grandmother blood and the night before being terrified that I could get her sick. I remember going through depression at a young age as well. So this is what it was like until I got pregnant with my first son.
In March of 1998 I was taken to the ER with my kidney swelling almost out of my back. I remember being in so much pain that I just fell to the floor at work. I had been coughing for a few days prior to that and felt like crap. But I wasn't the type of person back then that would lay around and rest to get better. I had to be on the move constantly. In the ER, I was told I had developed Asthma, a kidney infection, tonsillitis, strep throat, and a sinus infection. All this at once. I went to a follow up appointment with my PCP and he did a pregnancy test as precaution before he changed medications. Well he came in and said we have to change everything because you are pregnant. I remember sitting thinking something isn't right. Like I said earlier this feeling had always been around and as I got older it got stronger.
I cramped through the entire pregnancy. I was frequently sick with the flu or a cold. I had asthma attacking pretty frequently as well. The first time I went into preterm labor I was almost 5 months pregnant. I had some very life altering situations occur while I was pregnant so the doctors decided this was causing the preterm labor. These situations ranged from my mother having 2 heart attacks, the loss of my father, my mother losing her house and us living in a homeless shelter and motel for a month, and the medical problems I was having. I went into labor a total of 6 times during this pregnancy; thankfully I carried my son to term.
Gabriel was born 5 days before his due date, at a good weight and height, and healthy as a horse. The funny thing about my true labor with Gabriel was all the times I went into preterm labor I had a ride to the hospital. It just so happened the morning I went into labor it started at 4am. I took a hot bath and went back to sleep for a couple of hours. I had a doctor’s appointment that morning and I couldn't find a ride; my mother and I walked to the bus stop which was about a quarter of a mile from our house. I took the bus to the doctors that just so happened to be next to the hospital. I got to the doctors and she said today is your son's birthday, now go to the hospital. I had a very high tolerance for pain so labor really didn't bother me until the very end. He was very alert, smiling all the time, and was the greatest blessing that I received during that year of hell. It was the easiest labor from beginning to end.
In March of 1998 I was taken to the ER with my kidney swelling almost out of my back. I remember being in so much pain that I just fell to the floor at work. I had been coughing for a few days prior to that and felt like crap. But I wasn't the type of person back then that would lay around and rest to get better. I had to be on the move constantly. In the ER, I was told I had developed Asthma, a kidney infection, tonsillitis, strep throat, and a sinus infection. All this at once. I went to a follow up appointment with my PCP and he did a pregnancy test as precaution before he changed medications. Well he came in and said we have to change everything because you are pregnant. I remember sitting thinking something isn't right. Like I said earlier this feeling had always been around and as I got older it got stronger.
I cramped through the entire pregnancy. I was frequently sick with the flu or a cold. I had asthma attacking pretty frequently as well. The first time I went into preterm labor I was almost 5 months pregnant. I had some very life altering situations occur while I was pregnant so the doctors decided this was causing the preterm labor. These situations ranged from my mother having 2 heart attacks, the loss of my father, my mother losing her house and us living in a homeless shelter and motel for a month, and the medical problems I was having. I went into labor a total of 6 times during this pregnancy; thankfully I carried my son to term.
Gabriel was born 5 days before his due date, at a good weight and height, and healthy as a horse. The funny thing about my true labor with Gabriel was all the times I went into preterm labor I had a ride to the hospital. It just so happened the morning I went into labor it started at 4am. I took a hot bath and went back to sleep for a couple of hours. I had a doctor’s appointment that morning and I couldn't find a ride; my mother and I walked to the bus stop which was about a quarter of a mile from our house. I took the bus to the doctors that just so happened to be next to the hospital. I got to the doctors and she said today is your son's birthday, now go to the hospital. I had a very high tolerance for pain so labor really didn't bother me until the very end. He was very alert, smiling all the time, and was the greatest blessing that I received during that year of hell. It was the easiest labor from beginning to end.
Subscribe to:
Posts (Atom)