Saturday, August 15, 2015
I know I have been seriously lacking on my posts. You can now find me on Facebook:) Though I may have to come back here for some more personal rants!
Monday, May 11, 2015
Lyme Awareness
May is actually Lyme awareness month. So here is some "propaganda".
Strongest girl I know! And her two partners in crime, Aubrey and Kelli, taking a bite out of Lyme! These two girls have really come around to support Noelle in the last six months. It is awesome!!
Please continue to pray for Noelle and the hundreds of thousands of people diagnosed with lyme disease each year!
Strongest girl I know! And her two partners in crime, Aubrey and Kelli, taking a bite out of Lyme! These two girls have really come around to support Noelle in the last six months. It is awesome!!
Please continue to pray for Noelle and the hundreds of thousands of people diagnosed with lyme disease each year!
DC
Health-wise our trip to Virginia/DC could have been better timed for Noelle. She was fighting her endometriosis symptoms and for the first time in a year had to have assistance walking. We ended up purchasing her a pink walker for times when she needs to walk/stand for a long time.
But...we certainly did our best to see DC even with Noelle's limited energy:) First stop DC Cupcakes in Georgetown.
Beautiful, yummy and gluten-free!
Next stop the zoo! Then we went to the Holocaust museum and finally Legal Seafood. (I actually wanted to go to the Oceanaire based on memories from the last time we were in DC, but I messed up the name.)
But...we certainly did our best to see DC even with Noelle's limited energy:) First stop DC Cupcakes in Georgetown.
Beautiful, yummy and gluten-free!
Next stop the zoo! Then we went to the Holocaust museum and finally Legal Seafood. (I actually wanted to go to the Oceanaire based on memories from the last time we were in DC, but I messed up the name.)
Mayday
It is hard to sit back and let Lyme steal the active lives of those I love. It is hard for Noelle not to find a way to act. So she and I travelled to Arlington, Virginia to protest the IDSA (Infectious Diseases Society of America). There needs to be better education, research, testing, etc. for Lyme disease. Here are some pictures of our days protesting. Our protest actually closed their offices down. The first day they left at noon and the second day they worked from home. We did not get a lot of media coverage. Possibly because of the ongoing coverage in Baltimore that week.
This quilt represents those fighting lyme and those who have lost their battle with lyme. In the foreground they are tracing to make a chalk outline.
This truck circled the area where we were protesting. The police were very generous and even let us block traffic a couple times.
This whole thing read "IDSA Harms Lyme Patients". Noelle is holding the white sign at the end.
Thursday evening we held a candlelight vigil remembering those that have lost their lives to lyme. Honestly the list was scary long. One of the most recent casualties was a woman in her forties who took her own life. This speaker spoke out to those gathered asking that they reach out to others if they are considering suicide. Suicide and heart issues are two of the most common reasons for death in lyme patients. The chronic pain and neurological issues combine to make it difficult to press on. Each candle had the name of a lyme fighter that had lost their batttle.
Lady Lyme and the Lyme Avenger!!
http://lymediseasechallenge.org/
My favorite thing about the protest was educating people walking by about lyme disease. Many people stopped to accept information. We had personal letters from lymies telling their stories and Mayday pamphlets with lyme information. I think Noelle's favorite part was representing her many friends with lyme who were to sick to attend!
This quilt represents those fighting lyme and those who have lost their battle with lyme. In the foreground they are tracing to make a chalk outline.
This truck circled the area where we were protesting. The police were very generous and even let us block traffic a couple times.
This whole thing read "IDSA Harms Lyme Patients". Noelle is holding the white sign at the end.
Thursday evening we held a candlelight vigil remembering those that have lost their lives to lyme. Honestly the list was scary long. One of the most recent casualties was a woman in her forties who took her own life. This speaker spoke out to those gathered asking that they reach out to others if they are considering suicide. Suicide and heart issues are two of the most common reasons for death in lyme patients. The chronic pain and neurological issues combine to make it difficult to press on. Each candle had the name of a lyme fighter that had lost their batttle.
Lady Lyme and the Lyme Avenger!!
http://lymediseasechallenge.org/
My favorite thing about the protest was educating people walking by about lyme disease. Many people stopped to accept information. We had personal letters from lymies telling their stories and Mayday pamphlets with lyme information. I think Noelle's favorite part was representing her many friends with lyme who were to sick to attend!
Friday, April 24, 2015
New memories
Sabrina's Lyme doctor is in Wisconsin. Her first appointment was WAY up north. But follow-up appointments are in Pewaukee, which is near Milwaukee. Since Scott and I lived in Madison when we were first married it holds many happy memories for me. So Sabrina and I stayed in Madison and explored a little.
First up, Henry Villas Zoo. Which is, unbelievably, FREE! So you can bet Scott and I went there more than a few times when we were dating and first married. They have changed a number of things. Including adding a large Children's Zoo. Very cool! But a couple memories were stolen:/
Next up, Ella's Deli. You kind of have to be there to experience it! They have a carosel which Sabrina rode twice, once with and once without me. Every table is different. There is stuff to look at everywhere!! Good stuff, great memories!
First up, Henry Villas Zoo. Which is, unbelievably, FREE! So you can bet Scott and I went there more than a few times when we were dating and first married. They have changed a number of things. Including adding a large Children's Zoo. Very cool! But a couple memories were stolen:/
Next up, Ella's Deli. You kind of have to be there to experience it! They have a carosel which Sabrina rode twice, once with and once without me. Every table is different. There is stuff to look at everywhere!! Good stuff, great memories!
World War 3
Or maybe the civil war? Not sure which war, but every morning is a battle at our house. And every morning as I drive away from Sabrina's school I feel like I have PTSD.
Sabrina has been battling with her emotions, leg and arm pain, and stomach upset. So knowing that Sabrina has also had at least one tick bite we decided to have her tested for Lyme. The results were actually inconclusive. I am sure if I had not lived through the last 7 years with Noelle, that would have been the end of it. However, I have, so I called a LLMD (Lyme Literate Medical Doctor). Actually she is a nurse practitioner. She said that at least two of the bands that Sabrina tested positive for are Lyme specific. No way we are letting that go, so Sabrina is in treatment for Lyme. This currently involves two antibiotics (liquid since she is unable to swallow pills), fish oil, and a probiotic. We are trying to include Vitamin C but it isn't really happening.
Our mornings now feel like a repeat of mornings with Noelle when she was 11 and 12. Neurological Lyme is well known to have effects on the brain. (duh, that's why it's called neurological!) I think mornings are especially difficult because sleep is so important when you are fighting an infection. Honestly, the whole thing is so confusing. Especially with Sabrina since she also may have issues from her malnutrition as a baby. The dentists have discovered that it definitely has effected the enamel on her teeth. At some point they will have to actually build up or cap her front teeth as the enamel never formed properly. For now we are dealing with multiple fillings.
Our mornings are full of skirmishes. Getting up, is a battle. "I'm tired, my legs hurt..." And, yes, we have tried earlier bed times but she doesn't fall asleep until well after we have put her to bed no matter when we put her to bed. Last night I think she was up for over an hour after I put her to bed:/ Then comes what to wear. Her school has a uniform so you would think that would be easy. Nope. We found a loophole. She can wear any skirt/dress. But she has a very particular fashion sense and it is very hard for her to be pleased with her appearance, especially on school days. Next is hair. Oh, wow!!! Braids were pretty easy. You get it done and you are good for like two weeks. But she doesn't like braids anymore. I am unsure if it is her caucasion family or her mostly caucasion school but she wants long straight hair. And she loves to brush it. So we finally got it relaxed. That means that we have more options and we are rarely happy with it and might very well become unpleased with it on the way to school and rip out our ponytail holder!
Then we have to try to force down some breakfast, which she doesn't want. Obviously breakfast is good for everyone, but she really needs it because she is supposed to take two antibiotics with breakfast:/ And surprisingly liquid antibiotics don't taste very good and can upset your stomach. Then comes teeth. Nope, don't want to.
EVERY little thing is a battle! And her mood changes at least ten times between the time she wakes up and the time she makes it to the school door.
Do I discipline more? I don't know. I know she is honestly dealing with emotions beyond her. Her legs probably do hurt. Her stomach probably hurts.
She had her first counseling appointment this week. I am hoping the counselor can give her some skills to think before she speaks. And to control her emotions. To find some balance between high and low. To settle the anger.
School is a battle as well. We had a teacher mandated conference this week. Oh, joy! Scott and I have not had a chance to discuss the conference at length but his reaction was, "how did you like having a 23 year old tell us how to raise our child?" Yep, we are having fun!!
Sabrina has been battling with her emotions, leg and arm pain, and stomach upset. So knowing that Sabrina has also had at least one tick bite we decided to have her tested for Lyme. The results were actually inconclusive. I am sure if I had not lived through the last 7 years with Noelle, that would have been the end of it. However, I have, so I called a LLMD (Lyme Literate Medical Doctor). Actually she is a nurse practitioner. She said that at least two of the bands that Sabrina tested positive for are Lyme specific. No way we are letting that go, so Sabrina is in treatment for Lyme. This currently involves two antibiotics (liquid since she is unable to swallow pills), fish oil, and a probiotic. We are trying to include Vitamin C but it isn't really happening.
Our mornings now feel like a repeat of mornings with Noelle when she was 11 and 12. Neurological Lyme is well known to have effects on the brain. (duh, that's why it's called neurological!) I think mornings are especially difficult because sleep is so important when you are fighting an infection. Honestly, the whole thing is so confusing. Especially with Sabrina since she also may have issues from her malnutrition as a baby. The dentists have discovered that it definitely has effected the enamel on her teeth. At some point they will have to actually build up or cap her front teeth as the enamel never formed properly. For now we are dealing with multiple fillings.
Our mornings are full of skirmishes. Getting up, is a battle. "I'm tired, my legs hurt..." And, yes, we have tried earlier bed times but she doesn't fall asleep until well after we have put her to bed no matter when we put her to bed. Last night I think she was up for over an hour after I put her to bed:/ Then comes what to wear. Her school has a uniform so you would think that would be easy. Nope. We found a loophole. She can wear any skirt/dress. But she has a very particular fashion sense and it is very hard for her to be pleased with her appearance, especially on school days. Next is hair. Oh, wow!!! Braids were pretty easy. You get it done and you are good for like two weeks. But she doesn't like braids anymore. I am unsure if it is her caucasion family or her mostly caucasion school but she wants long straight hair. And she loves to brush it. So we finally got it relaxed. That means that we have more options and we are rarely happy with it and might very well become unpleased with it on the way to school and rip out our ponytail holder!
Then we have to try to force down some breakfast, which she doesn't want. Obviously breakfast is good for everyone, but she really needs it because she is supposed to take two antibiotics with breakfast:/ And surprisingly liquid antibiotics don't taste very good and can upset your stomach. Then comes teeth. Nope, don't want to.
EVERY little thing is a battle! And her mood changes at least ten times between the time she wakes up and the time she makes it to the school door.
Do I discipline more? I don't know. I know she is honestly dealing with emotions beyond her. Her legs probably do hurt. Her stomach probably hurts.
She had her first counseling appointment this week. I am hoping the counselor can give her some skills to think before she speaks. And to control her emotions. To find some balance between high and low. To settle the anger.
School is a battle as well. We had a teacher mandated conference this week. Oh, joy! Scott and I have not had a chance to discuss the conference at length but his reaction was, "how did you like having a 23 year old tell us how to raise our child?" Yep, we are having fun!!
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