I always have high hopes for things I want to accomplish. One of the things I have had to accept is that I can't always do what I want to do. There are times when it literally takes all my energy just to get ready, take care of Raegan, teach, and make it home. Some days when I get home I have nothing left. It is what it is, and I've learned that I'm much better off not fighting it. If I push it, I will pay for the next two or three days.
Today I managed to get around, A, R, and I went to eat lunch with our friend, and then we came home and I slept -- for FOUR hours. I couldn't believe I had slept so long, but evidently I needed to catch up. I was able to accomplish some things after I woke up, so that is a plus!
Today also marks the first day in close to two weeks that I have not had to take ibuprofen. I'm hoping and praying that I don't pay for that tomorrow!
We have had typical fall weather today, and I am so ready for the weather to change once and for all. This changing all the time business it hard on my joints. Right now I finished with everything for the day, my precious boy is asleep on my lap, and I'm counting my blessings... because it could always be worse.
Now faith is being sure of what we hope for and certain of what we do not see.
Hebrews 11:1
Sunday, October 10, 2010
Friday, October 1, 2010
My Story
After being out of high school only two months, I got engaged to Aaron. I'm sure many people thought we were too young, that it was for the wrong reasons, that it wouldn't last, etc. However, we knew we were going to get married and we decided that there was no reason to wait. Eight months later we were married in the church I grew up in by the pastor who has baptized my dad, my mom, my brother and me.
Aaron finished school and started a job using his degree. He worked in that field for close to a year. Meanwhile, I was working close to 40 hours a week at a bank and going to college full-time. To say we were busy was an understatement. After one year of marriage, work at Aaron's job came completely to a stop. After a couple of months, we were fortunate in that he was offered a job in his hometown. This job came with wonderful benefits, something that at the time we never thought would be "critical". He accepted, we bought our first home, I transferred schools, and we began our new life in a new town.
I continued going to school and got a job in the courthouse. I would go to class in the mornings, work all afternoon, and some evenings go back to class. I remember in the winter of 2006 noticing that when my hands were cold they turned white. At the time, my boss and I looked this up on the internet and found the name for it -- Raynaud's. A few months later I remember feeling totally exhausted all the time. My joints had become so painful that I could not get up if I sat on the floor, it hurt to sit down in a chair, I couldn't even open a bottle of pop. However, I never put these symptoms together. I just attributed them to other things and went on with my life.
Meanwhile, Aaron and I decided we were ready to start a family. In August of 2006, I began bleeding. After a few days, I was still bleeding and it had become extremely heavy. When I started having extremely large clots and extremely painful stomach cramps, we decided to go to the emergency room. I thought I was possibly having a miscarriage.
We drove an hour and fifteen minutes to the hospital where we found out I was not miscarrying. They did a CBC and my platelet count was at 5,000. A normal range for platelets is 180,000-400,000. After discovering this, they admitted me. I was told at the time that I could have sneezed too hard and bled to death because my blood was not clotting at all. I received four transfusions my first night in the hospital. The next day was when the scary stuff started. I met with a hematologist and oncologist. I learned I would need a bone marrow aspiration along with a multitude of other tests. I will never forget the feeling I had when I was told there was a chance I had cancer.
Everyday I had vials upon vials of blood taken and I also had my bone marrow biopsy. Because of a local anesthetic, it was not painful. They allowed Aaron and my mom to stay in the room during the procedure so they witnessed it all. After a few days, my counts had risen some, and I was released from the hospital - two days from my birthday. On my 21st birthday I had an appointment with my oncologist to receive the results of my biopsy. On this day I experienced another moment I will never forget -- being told that I did NOT have cancer. However, my ANA level was extremely elevated - 1280:1. I was referred to a rheumatologist in OKC and I continued to see my oncologist.
To shorten an already long story, I was diagnosed with lupus, secondary osteoarthritis, and secondary Raynaud's syndrome. I was started on massive doses of prednisone in the hospital -- 100mg/day. While I began to taper off of this medication, I was started on a new one - Imuran, which contains minor doses of chemotherapy. My doctor told me it would be at least 5 years before we could even think of having children, and it might not be possible at all. For the next year, I continued to feel horrible. Looking back, I often wonder if some of it was from the medications.
I began seeing a new rheumatologist after a year, started on plaquenil, and soon after was in remission. Two and a half years after I was diagnosed, I graduated with my bachelor's degree in elementary education. Three years after my initial diagnosis, I gave birth to my miracle boy, Raegan. As of this time, I am still considered to be in remission, although I am experiencing some flare ups.
Not a day goes by that I don't realize how lucky I am. I may have an extra 70 pounds from massive doses of steroids, I might have lost a year of my schooling, I had to cut my hair because I was loosing so much of it from the Imuran, I have physically felt like I could not go on, but I made it. At the same time, I know it can all change in an instant, so I am cautiously optimistic. I have beat this ugly disease for now, and should I have to, I will beat it again.
Aaron finished school and started a job using his degree. He worked in that field for close to a year. Meanwhile, I was working close to 40 hours a week at a bank and going to college full-time. To say we were busy was an understatement. After one year of marriage, work at Aaron's job came completely to a stop. After a couple of months, we were fortunate in that he was offered a job in his hometown. This job came with wonderful benefits, something that at the time we never thought would be "critical". He accepted, we bought our first home, I transferred schools, and we began our new life in a new town.
I continued going to school and got a job in the courthouse. I would go to class in the mornings, work all afternoon, and some evenings go back to class. I remember in the winter of 2006 noticing that when my hands were cold they turned white. At the time, my boss and I looked this up on the internet and found the name for it -- Raynaud's. A few months later I remember feeling totally exhausted all the time. My joints had become so painful that I could not get up if I sat on the floor, it hurt to sit down in a chair, I couldn't even open a bottle of pop. However, I never put these symptoms together. I just attributed them to other things and went on with my life.
Meanwhile, Aaron and I decided we were ready to start a family. In August of 2006, I began bleeding. After a few days, I was still bleeding and it had become extremely heavy. When I started having extremely large clots and extremely painful stomach cramps, we decided to go to the emergency room. I thought I was possibly having a miscarriage.
We drove an hour and fifteen minutes to the hospital where we found out I was not miscarrying. They did a CBC and my platelet count was at 5,000. A normal range for platelets is 180,000-400,000. After discovering this, they admitted me. I was told at the time that I could have sneezed too hard and bled to death because my blood was not clotting at all. I received four transfusions my first night in the hospital. The next day was when the scary stuff started. I met with a hematologist and oncologist. I learned I would need a bone marrow aspiration along with a multitude of other tests. I will never forget the feeling I had when I was told there was a chance I had cancer.
Everyday I had vials upon vials of blood taken and I also had my bone marrow biopsy. Because of a local anesthetic, it was not painful. They allowed Aaron and my mom to stay in the room during the procedure so they witnessed it all. After a few days, my counts had risen some, and I was released from the hospital - two days from my birthday. On my 21st birthday I had an appointment with my oncologist to receive the results of my biopsy. On this day I experienced another moment I will never forget -- being told that I did NOT have cancer. However, my ANA level was extremely elevated - 1280:1. I was referred to a rheumatologist in OKC and I continued to see my oncologist.
To shorten an already long story, I was diagnosed with lupus, secondary osteoarthritis, and secondary Raynaud's syndrome. I was started on massive doses of prednisone in the hospital -- 100mg/day. While I began to taper off of this medication, I was started on a new one - Imuran, which contains minor doses of chemotherapy. My doctor told me it would be at least 5 years before we could even think of having children, and it might not be possible at all. For the next year, I continued to feel horrible. Looking back, I often wonder if some of it was from the medications.
I began seeing a new rheumatologist after a year, started on plaquenil, and soon after was in remission. Two and a half years after I was diagnosed, I graduated with my bachelor's degree in elementary education. Three years after my initial diagnosis, I gave birth to my miracle boy, Raegan. As of this time, I am still considered to be in remission, although I am experiencing some flare ups.
Not a day goes by that I don't realize how lucky I am. I may have an extra 70 pounds from massive doses of steroids, I might have lost a year of my schooling, I had to cut my hair because I was loosing so much of it from the Imuran, I have physically felt like I could not go on, but I made it. At the same time, I know it can all change in an instant, so I am cautiously optimistic. I have beat this ugly disease for now, and should I have to, I will beat it again.
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