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!

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!!

Wednesday, April 1, 2015

Unexpected Political Advocacy

April 1, 2015

Dear Senator

I am writing as a mom who has watched her almost 19 year old daughter suffer in daily pain for four and a half years. She suffers from chronic pain, due to Lyme disease, Endometriosis and Chronic Migraines. I have watched as she missed most of her Junior year and all of her Senior year, including prom and graduation ceremonies. For that same four and a half years I have watched as doctors prescribe heavy duty medications like oxycodone, hydrocodone and Tramadol. I have watched as Noelle has tried to avoid becoming dependent while trying to ease her pain.

I am writing to encourage you to wonder what you would want if this was your daughter, or your granddaughter. Would you want her to have the chance to try every possible treatment? I honestly don’t know if medical cannabis will change my daughter’s life. But it could. She struggles every day to do the things that others take for granted. She is a fighter and she fights through and does amazing things. But as a mom, I want her life to be easier. It shouldn’t be difficult for her to walk across campus due to leg pain.

Please vote to give my daughter, and many others like her, the chance to try every solution to their medical issues. Give them the right to access medical cannabis right here in Iowa. We love Iowa. We have no desire to move so that our daughter can get access to every option for her medical care.

Thank you for considering voting in favor of medical cannabis. As a life- long Republican I would prefer to continue voting based on other issues than this. If you have questions about our particular situation please feel free to call at ...

With high hopes,
Diane Larson

I have said over and over during this journey that you have no idea what you will do in a given circumstance. I just sent this letter to all of the Iowa Republican Senators. The Medical Cannabis Bill has passed the Iowa House and will now go to the Iowa Senate; at least if I have my information correct. I would love for Noelle to test this treatment for her pain. I feel that the side-effects and possibility of addiction are most likely better than what she currently takes for pain.

As we continue to try and deal with her pain, we had an appointment with our third pain doctor yesterday. I wrote about our first appointment in January of 2014 here, It was not a good experience. Our second attempt was shut down. After reviewing Noelle's records the doctor did not even grant her an appointment. Yesterday, the doctor gave Noelle's pain a great deal of respect and is trying two new medications. We are praying this medications will eventually contribute to lessen Noelle's pain.

In another scheduled attempt at political advocacy, Noelle and I will be attending the Lyme Mayday Protest in Arlington, Virginia, at the end of the month! More on that later!