Where "You're Getting On My Last Nerve" takes on a whole new meaning.

Honestly, I didn’t forget about this blog. I’ve had some nasty MS gunk happening to me which has kept me away from my computer. To sum it all up.. major pain in my hip and hamstring, and some other issues I’d rather not discuss. (Don’t worry, they are not gross or anything.. just sensitive yet.)

Anyways, I’m not sure what to post here today as I’m out of ideas at the moment. Really, I would think that I would have more with having five children husband, and a dog.

The heat has been nasty, nasty bad here lately.  I have a terrible heat sensitivity (Utoff’s) that I’m just a mess. I have trouble walking, talking, I get dizzy. Soooo, my husband has been making most of our meals, and I must admit, he’s learning how to cook quite well. I am proud! I’ve spent the last four days laying in bed, in front of the fan. The meds my neurologist put me on make me extremely tired. I’ll probably fall asleep after posting this blog post. Oh, my life is so much fun! (sarcasm)

My kids start school next week, so we are getting things ready for that. I can’t wait! Their first day of school pictures will be of them in their pajamas. They attend an online charter school. I think the first few days they’ll be doing some placement tests. Fun for them, eh? (sarcasm again)

There you have it, a quick update.

I’m sure next time I’ll have something to write about.. like how CBD’s help MS, or something cool like that. I’m not big on Big Pharma, and supporting them.

It’s Better Than

Finally! I am feeling better. The new meds made me extremely fatigued, and then made me very sick for 3 days. Thankfully I am over it, I hope. I’m sure glad all that is over with… I was miserable.

So, today in celebration of my bloggy return, I leave you with this…

I know…

But, I have THREE boys, and a husband… trust me,  this is funny, but what is funnier is finding this word written on the back of a blank piece of poster board when my child had to make a poster for a school project. Which by the way, school is out this Friday. What oh what shall we do?

Here it is…

photo

Boys (and men), eh?

I’m still shaking my head… but I guess this is better than finding naked Barbies in the Princess Castle Doll house, with strings tied around their necks.

 

 

 

 

 

 

 

 

 

 

 

 

 

Out of Pocket

My goal was to post at least once a day or every other day,  however this new med I am on is kicking my butt! It makes me super, super fatigued. I get fatigued now and then due to the MS, but never like this. I wake up, make breakfast, help kids with school work, take a nap, get up, help kids with schoolwork, take a nap, get up, make dinner, then take a nap, get up and watch an hour of TV, then go to bed.

I’ve slept so much in the past 3 days that I should be good to go for the rest of the year!

This shall pass, hopefully. When it does I plan on posting some fun, quirky stuff. I have not been my normal witty self, so please be patient with me. I have some stories to share that are not MS related… like playing in a large sand box and getting sand in my toenails…

Sooooo, give me a few days… and as the Governor of CA would say, “I’ll be back.”

Will it Slow it Down?

Today I started a new MS therapy drug called Tecfidera. The only side effects is has is flushing and GI issues. (So far I’ve had nothing… my eyes burn like I’m tired.. so, I’m probably tired.) I normally don’t like using prescribed drugs, and I try to avoid them. I’ve been pretty successful in controlling my aggressive Multiple Sclerosis with diet and supplements. I’ve gone from having relapses once a month down to Five a year. It’s still quite a bit. This drug is “supposed” to help slow down my progression.

I don’t know… it’s hard because I’m anti “big pharma”, but at the same time I want this nasty disease to slow down. I’ve tried MS therapies before, and I was allergic to one, another I was very sensitive to it. Other drugs I cannot take due to asthma, or that I am JVC+. So, here I am, trying a “new to market” MS therapy. I can only hope it helps, along with my diet. It is supposed to help the inflammation and oxidative stress – both of which I need help with. Oh, and it comes from a mushroom, and its cousin is used in Germany for psoriasis. Oh, and I’ve been following this drug for three years… so far so good.

Soooo now on to my next post… I didn’t write anything over the three day holiday.

My Possibles Bag

My Possibles Bag

I crack myself up! I used the term “crocheted hag bag” today.

I’ve never been one to carry a “purse”… I’d rather have shorts with large pockets for my wallet and phone. I really don’t like how a purse weighs me down, and takes away my freedom.

So, one day, about three years ago I broke down and bought my “Possibles Bag”. If you know what that is, then good for you! If not, google it or something. I needed a larger bag , similar to a saddle bag, to carry all my paperwork to all the different doctors I have. One time I had so much paperwork, my pant pocket was bulging way too much.. like a bubble. Well, I didn’t want an ordinary womanly-femalishly purse… I wanted a bag. One that reflected more of who I am, and one that I could carry rocks in. The above picture is what I found. It does the job, and I can put it over my shoulder, and across my chest to carry it so that I can use my cane. Somehow, I have damaged nerves that don’t allow me to carry things and walk at the same time. If I carry two things, each in one hand, I have a hard time taking a step, let alone balance to walk. It’s weird. I use a cane to help me with my balance.

Anyway, back to my bag… in it I carry my wallet, paperwork, lip balm, gold prospecting info, and some meds for when I am out. It works for my needs of it, and I put all my “possibles” into it. One time I found a Barbie head in it – yeah.. not sure how that happened, well, I have an idea that involves a cute blonde.

Dinner Dilemma

You would think that cooking for seven people is hard. Nope. It’s really easy actually. My issue is the heat.

I have had heat intolerance since I was a child. I’ve had my share of throwing up after marching band practice (I played either trumpet, bass drum, or bells).. in the middle of summer (yes I was hydrated). I don’t want to do that again… my Dad thought I was pregnant. I wasn’t. I’ve never been able to take showers in the morning because the heat from the water makes me tired. I get a slight fever, like it going up one degree, and I’m a mess.

I thought all that was “normal” until I was officially diagnosed with MS. Now that my MS has suddenly become evil rapidly progressive the heat intolerance has gotten much worse. Oh, it does have a technical name - Uhthoffs Syndrome (I hope I spelled that right.) I remember the name because it reminds me of my favorite Norge word… Uff Da.

My dinner dilemma is being able to cook dinner (and breakfast, and lunch) without getting over heated. When I overheat, I often get dizzy, and getting dizzy while standing next to a hot stove is not my ideal of fun. Obviously cooking in the summer time is the hardest.. I do OK in the winter.

Here are my suggestions to cooking, while staying cool in the summer:

I have two crockpots, which I use often.

I have 5 children, and most of them cook quite well.

Salads!

I have a rice cooker which is also a steamer. I can cook rice (I cook mostly quinoa in it) while I steam veggies at the same time.  

Having a fan in the kitchen – the trick is to have it not cool your food off before serving.

A large freezer nearby which I can stick my head in to cool off quickly. (Yes, I’ve done that often.)

Planning ahead….. Yeah, I try. I really suck at menu planning.

Preparing meals ahead of time. I need to start cooking all my meats in one day. It really helps to have it cooked and frozen, then to add to sauces or whatever.

Oh, and if I could somehow get more energy! Fatigue hits me bad in summer. I feel like a paperweight, and  a noodle both at the same time. Last summer I lost eyesight in my right eye for three months, and my left eye was blurry. Thankfully I got my eyesight back!

And finally, when all fails send the hubbs out for carry out!

I am up for suggestions for keeping cool, or even easy cool recipes. You know besides fruit salads, non-cooking foods. (I also avoid dairy, gluten, wheat, and sugar.)

The grill (Charcoal) has a wasp nest inside it…. so… we may not use it.

 

 

 

 

 

Meet and Greet

I have Multiple Sclerosis (MS)… admitting the problem is the beginning to recovery, right? (I wish in my case). I am the Demyelinated Diva. I have “many scars” where my nerves in my central nervous system have been demylinated. It’s much like an electrical chord, and a mouse chews on part of the wire coating (the myelin) – the electricity no long flows well through that wire. That is what happens to the nerves in my brain and spinal chord. It sure makes life interesting when the electricity doesn’t flow – with me, you just might find the milk in the cupboard.

Anyway, I used to be a successful “homeschool blogger” back in the early 2000s. Then my life went to, seemed like, heck when I was officially diagnosed. I’ve had MS for about 25 years, but in the last 3 it has rapidly progressed.

This blog will not only talk/discuss/type my MS stories – which are often funny, but it will also be a mish-mash of whatever fits my fancy at the time. I mean, I have a husband, 5 children, and a dog… so there are plenty of things for me to blog about. I’m also dyslexic… so go easy on my when my grammar sucks… I prefer rocks, gems, gold, beakers, test tubes, and equations to grammar.

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