Ah Sunday.

So we slept in, later then I would like as messing with my sleep schedule messes with my Migraines and vertigo. But, It was nice to get up and make cinnamon rolls, chamomile and green tea and just sit for a bit. Sadly, I have a ton of cooking to do today and I still need to get out to the new property and do some more clearing. Working a chainsaw alone is not exactly the best Idea so I’m thinking Ill pay attention to my plants today, clean and cook. I may even go ahead and try this Carmel Apple Jam recipe. We shall see.

But I do need to take care of the plants outside. Because they are in pots they need watering a lot more and are also vulnerable to weather like the storm last night. The thing about living full time in an RV is that I am VERY aware of the weather. Not just for watering and such, but for safety, for securing the things outside like plants and BBQ grill, but also for Migraines and MS issues. I feel like a human barometer. I can tell a storm is coming sometimes 48 hours before its on the news. It feels like my ears are very full, alot of pressure, and they wont pop. That sets off my vertigo, in that every time I turn my head, change focus, do turns in ballet, look quickly in another direction, I either fall in that direction or land on my butt. The latter when its really bad. I did physical therapy to learn how to function with it. The secret to that is instead of just looking at something, I have to close my eyes while I switch from one to the other. But it has to be quick because closing my eyes also makes me fall.

It’s a lot better then it was this time last year. FB showed me some posts from a year ago and the year previous, both were about how ruff things were. My vertigo was so bad I couldn’t get out of bed and sometimes could not focus my eyes. I had either extremely intense pins and needles or no feeling at all in my legs. Have you ever had your leg fall asleep and you had to sit and wait for it to stop because you couldn’t walk for a few minutes? Imagine that from the waist down, and it doesn’t go away. Its good to see those posts so that I can see how much better things have gotten. I just wish I could get the migraines under control. My doc has me on Amitriptyline for a daily migraine maintenance and Sumatriptan (Imitrex) for a rescue. I cant see much very much difference since adding the 1st.With the Imitrex, I am hesitant to take it because it makes my face, jaw and shoulders hurt so bad that I often wish I had just suffered the migraine.  I did however see a lot of difference with the vertigo when I stopped drinking coffee in the morning  (I know I know, but i noticed a pattern of being worse in the morning) and starting the antidepressant Bupropin. I am still on the Anti-Inflamtory Diet, but no longer Gluten Free. After trial and error I found that its all the additives and artificial stuff that just tears me up. That’s why I started making everything from scratch, canning, and growing my veggies and fruit. There is Monosodium Glutimate (MSG) in soooo many things, even Campbell’s Cream of Everything soup.

I am nervous about tomorrow when I get my 1st dose of Gilenya. I will be checked in for the day to be monitored because people often pass out due to low heart rate and sudden drop in BP. Kind of freaky. The last med, Tecfidera, had 2 side effects: Flushing, which is very intense sometimes where I can barely catch my breathe, and a good one that took care of my Psoriasis. Now that I’m off it, no flushing but my psoriasis is flaring pretty well. The worst is on my elbow and face, which itches, flakes, peels, cracks and bleeds. Looks gross too. People often think I have been badly burned. When I was teaching Canoe for the Girl Scouts, I started by saying, “Hello everyone, I’m Woody (camp name from toy story) and I have psoriasis. It is not contagious, just ugly. If you see it bleeding let me know so i don’t ruin my clothes.”  I used to be very active. I would run the waterfront program for summer camp every year. It was my vacation, probably the best times of my life. I miss it so much that when I think about it, tears roll down my face no matter how much time has passed.

I also used to be an upper level Competitive Irish Dancer. But with my legs not working, pins and needles don’t work in a sport where you are jumping, landing and banging all the time. So now I choreograph. The best place to come up with new stuff is inside the MRI tube. I get an hour and half relaxing to an unsteady beat. So far I have come up with 2 jigs (2 and 3 person) A show piece, also a jig, and an advanced reel (2 hand) Sadly I have not had the chance to share them with my school because my teacher, a REALLY wonderful person, is in the diagnosis phase of her illness. I am so scared it will be MS as well. She has been dancing her whole life and owns her own studio. She is amazing and so many dancers have benefitted from working with her.

Well, its noon now. I need to get cooking so that when it cools off I can be outside with the plants. Think Ill make Sweet Rosemary Chicken tonight on the grill. (Chicken breast, with Honey and agave nectar, Worcestershire sauce, minced garlic and fresh rosemary sprigs, grilled YUM)

 

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