Saturday, February 27, 2016

MiyakoCon and Good Days

Big doings in Rachel-world today! A young woman with whom Rach attended middle school decided that she would start up a new anime convention, and today was the day for the first one. We learned about it just this week, and Rachel got very excited, but wasn't sure if she was up to going. She had a couple of seizures this week, and her confidence in her ability to cope had taken a hit.

Yesterday she announced that she really wanted to go, and was super excited, and she was going to just have me drop her and Stewie at the door. Everything went as planned, we made a stop at the ATM, and we arrived at the venue, enjoying the sight of all the young people outside who were posing for pics in their cosplay outfits and colorful wigs.

Rachel only stayed about an hour before calling to let me know she was ready for pickup, and when I arrived I found her deep in conversation with a young man, and they were exchanging Facebook info. Her cheeks were pink, and she had a huge smile on her face. I almost cried with joy. Rachel has so few days that include opportunities to meet new people, and make special connections that when it does happen it's remarkable.

I asked why she didn't stay longer, since it was obvious she was having such a good time, and she said that it was so busy, and bright, and loud, and she had already spend so much money, that she decided to leave while she was still having fun, and not push herself to the point that she panicked and then ruined the entire memory. That made me a little sad, but also very proud of her for being mature enough to recognize her limits, and know when enough is enough.

This has been a good day. :)

Tuesday, February 16, 2016

Rumination and Medication

On Monday the 15th, Rachel had a regularly scheduled psych appointment, so I had some time alone in the waiting area. After about 30 minutes Rachel brought Stewart out, and asked me to take him out for a break, and then I kept him with me for a few minutes, and we waited together.

While we were waiting, my mind was on many things, but having recently updated this blog, my thoughts veered toward what sorts of things we want to share about our journey.

The only major thing we've not shared here is that Rachel is a medical cannabis patient, and we started this treatment 3 years ago this month. We have tried pre-made tinctures and oils, and homemade products as well. All of them have helped to at least a small degree, but mainly with the rampant anxiety she lives with, and not so much with the seizures.

Our most recent change has been to begin using a sub-lingual with a 1:1 THC to CBD ratio, in an Indica strain, which is very helpful for the anxiety, and for helping with bedtime wakefulness. It was developed and the product created by the wonderful people at Oregon Microgrowers Guild. Rachel has been using it 3 times a day, steadily, for the last two weeks. In that time she's had one very small seizure, and though she's had some anxiety, she hasn't had a meltdown, or even a moderate attack.

We always have hope that whatever newest treatment we're using will be the one that makes the difference in her life; that it will make her life more manageable, and less stressful. The jury is still out on this tincture, but the nice thing about cannabis treatment is that there are so many options, and all of them are less scary than a new pharmaceutical treatment.

Rachel is still taking all of her prescribed medications, but cannabis has allowed her to wean off Klonopin, and we are hoping to make a reduction in her very high dose of Keppra.

This sub-lingual oil is in a healthy coconut oil base, and is kept refrigerated, so that's why it looks like it has white spots. The dosing is tiny, so there is a lot of room to increase. This 1 ml syringe contains 20 doses at our current level, and Rachel is dosing 3 times a day. Because of the low level of THC, Rachel is still able to concentrate at school, and doesn't feel "dopey" the way she does when she has to use drugs like Klonopin.

Please feel free to comment, ask questions, share knowledge, etc., but save your criticism. Rachel is an adult, and none of her treatments are pursued without her consent, which she is fully capable of giving. When you've almost exhausted all the prescription options, and you don't want to just sedate your child into oblivion, you get creative in your thinking, and your mind opens to trying something that humans have used safely for thousands of years. 

We believe that someday soon cannabis will be rescheduled at the federal level, and people all across America will have the option of treating their ailments with one of nature's most helpful plants.

Friday, February 12, 2016

Waiting For Rachel

Well, the post title pretty much sums up my life these days. The last couple of years have been so full, and I so wish that I had been better about updating here, and sharing all of the changes with you.

Sadly, Rachel and Jonah split up, but she enjoyed the time she had with him, painful as the end was. There was a lot of wisdom gained from the experience, and she grew in new ways as a result.

Rachel began taking early childhood education courses at the local community college, going half time, and taking Stewie with her, of course. She's currently taking a term off from that, and very much enjoying a Drawing class, while deciding whether to return to school next term, or devote her time to another opportunity.

Expect to see a slew of photos, and minor updates, while we continue our journey, and Rachel continues to expand her horizons. Here are a few recent images, taken at school:

Sometimes Stewart has to wait for Rachel, too. At the dentist, the hygienist's space is really too small for him to be in there, and every now and then he just needs a break from lying on a hard floor, or I'll take him for a walk and break for a few minutes, and we don't want to interrupt class to return him, so we have to wait a few minutes for Rachel to come get him.