Wednesday, June 13, 2007

More About Nancy

I had a very difficult time giving birth to Nancy. When the nurse handed her to me she looked like she had been in a war zone. She was never a cuddly, touchy, feely baby. I always thought something was wrong, but hoped for the best.

When Nancy started first grade she attend the regular classroom, but it wasn't too long that we got a call from her teacher. She said something was wrong and that maybe Nancy needed to be in Special Ed. When she started special ed in the 60's there was only one class for the special needs kids. The following year, they revamped everything and divided the classrooms up. For the rest of her school years she was in Special Ed.

Nancy had a mental breakdown in 1983. She was diagnosed with paranoia schizophrenia. She was in the mental health ward for a few days. The doctor prescribed medicine that started helping her. She began working at the sheltered workshop in 1985. She adapted to this very well, most of the time. There were days we just could not get her to go to work. Those days were a nightmare! This is how life was for many years.

Then in 2003, Nancy lost a bunch of weight and physically started feeling very ill. We took her to the doctor for blood tests. We waited and finally got the dreaded call back. The doctor's office set up an appointment with an oncologist thinking the worst. Before we could get to this appointment, the status of her health worsened and we had to take her to the hospital. They ran many test, including a bone marrow biopsy, cat scans, etc...The results came back that she had Systemic Lupus Erythematosus. This is the worst form of Arthritis. It is a horrible autoimmune disease that makes ones body believe that their good organs are the enemy. Your body then begins to attack healthy organs. Nancy's started in her spleen and bone marrow.

She was on imnuran for a year and it didn't help. She was not able to breathe and more tests were taken and it was discovered that the Lupus spread to her lungs. In December 2004, she began oxygen 24/7. Then March of 2005, she started six months of chemotherapy. We were blessed with a wonderful chemo nurse who was incredible with special needs people. She still keeps in contact with Nancy.

Our rheumatologist, referred us to one of the best doctors in the area at the KU Medical Center. He began chemo treatments in November and December of 2006. The only problem was that she was given mega doses of prednisone, which only enhances paranoid behavior. So, we have since been going to a psychiatrist who prescribed more of her mental health meds. This has helped not hear voices for the first time in a long time. The psychiatrist told me the reason Nancy says the same phrases over and over is because her brain gets stuck in a groove. I really don't understand what that means, but I know she says the same thing over and over to me all day. My family says I do really good with her, but sometimes I loose it when I've heard the same thing fifty times in a day. Then I feel so bad, but God has given me grace to care for her. I am so thankful for this.

This is where all of you wonderful bloggers come in. I have always been able to go out and about. Seeing folks at the grocery store, post office, and library, but since I crushed my knee and have been dependant on my other daughters to help me out, I have been more or less shut in. I started going out and reading all the blogs. It was like inviting friends over to visit each day. I wrote all this so you all would have a better idea as how to pray for me and Nancy. I really appreciate all your prayers


It's a FLIP-FLOP World said...

Thanks for filling all of us in some!! I understand a little bit more. Nancy is just a little bit older than our oldest son. Our oldest will be 43 this year in November. You have had a time. But it sounds like you have done the best that you could do and have hung on to your faith in Christ. I am also a Christian now for about 35 years. Take care and keep in touch. We have some great blogger friends on here...believe me. Sandy

Barbara said...

I hope this doesn't come through for a second time - something about ID - although mine is on here.

I found your blog through your comment on mine. I began to read and read to this post of your daughter. Will be praying for you both. Hope you have a good weekend while your daughters are gone 'diamond digging'. :)

Pearls of Wisdom said...

I am praying for you both.

Hugs and Love,

Angel ():)

Donetta said...

Hello, Carolyn. I too was in the special ed in the mid to late 60's. I was unable to attend classes due to learning disabilities .
I now am raising two wonderful kids who both have special needs.
I so admire you. I know that the road you have to walk is a tough one.
Nancy sounds like a wonderful daughter. I love her heart to give. At Walgreens you can find post cards in a large book form where they can be torn out. this is a very economical way to get them. Fondly Donetta
Come by for a visit some time.

Donna said...

This is the first time I had read about your daughter and the lupus and other problems. God certainly does give you grace to be able to deal with all you have going on. I know you're anxious to get the laptop back.