Pulling the Plug

Sometimes people can really surprise you. Today definetely turned into one of those days. There's a lot of people helping Chris and I squeak by right now. Especially my Mom. My health insurance alone costs more than our rent a month. When so much focus goes into simply affording survival, there isn't room left for certain indulgences. Especially not without the guilt of what other thing could be being handled instead. 

I wrote a post yesterday about our visit to Sheetz, and some of the emotions it invoked. I worked there for over six years, my life was vastly different. Including being much more financially secure. I talked about my grief related to mourning that life that's now gone. I also mentioned being sad that I couldn't get a frozen yogurt.

My Pains Have Pain!

Ugh. There's so much I want to get done. As I pace around my apartment though looking over my options none of it seems like an appealing venture for tonight. I want so badly to be the motivated superwoman wife for my husband, but today just isn't one of those days. And it doesn't seem to be anything good intentions and a 'can do' attitude is going to remedy. Most of the basic chores are done. I haven't washed dishes, and I still have a basket of laundry left to put away. Neither of which will take long when I actually do them. 

Sleeping with Multiple Sclerosis

Tried to go back to bed last night after I wrote my blog hoping that would wind me down enough, but it didn't work. I had a rough night trying to sleep. I was up and down I don't know how many times to pee, tossing and turning. When I finally did sleep it wasn't for long before I was awake again.

Multiple sclerosis messes with my sleep bad. I had a sleep study done last year because of it. I got absolutely no REM sleep, and woke up hundreds of times throughout the night. i wish that was an exaggeration. While I have no sleep apnea or anything of that sort, sometimes my brain just doesn't want to sleep. There's a ton of things that happen that let your body sleep, chemical changes, etc. Because of where my lesions are on my brain things don't always happen properly, and then I don't get to sleep very well. Everyone's MS is different. Hell, sometimes I think mine changes day by day. One thing that remains the same though is that it loves to mess with my ability to sleep.

Between a Rock and a Hard Place...

Bah. I am so worn out, and as a result I've been so lazy. The little bit of stuff I am getting done around the house is taking some tremendous inner-dialogue pep-talks. My Tysabri infusion didn't make my stomach as bad as it had been this time. Thankfully so, the increase in steroids has me starving. I'm constantly hungry. It did make me itchy as all hell though. So.itchy. That's annoying.

I've been getting some serious nerve pain in my right hip/leg/foot the past few days. This is the same hip that I broke in a car accident a few years ago and had major surgery on. I'm not sure if the nerve pain is a result of the slow nerve regrowth reaching a certain point after all these years, or if it's my MS. I hate things like this that could be from multiple things. Especially when there's really no way of telling which. If it is from my MS I likely have a flare starting, which is bad news. Last time I had nerve pain in my leg like this that turned into a flare I fell down a set of stairs randomly when my leg went numb.

Smudge

Yesterday wound up being pretty quiet. My Pop visited for a bit and surprised me with a turkey sammich which was cool.

I got a bit of stuff done around the house, and then went to my grandparents and ate dinner with them and my Mom. They gave me a plate for Chris when he got home from work so that saved me some effort last night. Went out with him to fill the car with gas. One tank usually lasts us two weeks, but we ran extra out with looking at Christmas lights. We watched a bit of TV and crashed as he had to be back at work at seven.

Today was a super lazy day for me. I got a few things done around the house after he went to work, and sat down in the TV room. Forgot the fireplace was running, and fell asleep. Story of my life lately.

At least I get to spend time with Chris today, as he actually works the same shift tomorrow so we'll have more than eight hours before he has to be back at work.

I just made my last coffee. This is a problem. I must restock.

Yikes!

I've been seriously slacking in the blogging department. In my defense life has been crazy. Shortly after my last post Daisy was attacked by another dog. She had to get emergency stitches. She's healing up nicely at this point. Chris was also in the ER for kidney stones.

I've taken up some major redecorating and reorganizing projects in our house that have had me pretty occupied. While I should be documenting and sharing them with all of you, it's been pretty exhasting just getting it done.

My rheumatologist is switching me back from Rayos ($12k+ a month) to prednisone (a few bucks a month) at my request so I can once again try to cut my ties with steroids. It's not easy, and I've found that now my sugar is crashing again in the middle of the night. Nothing can ever be simple.

Five Days!

Today was crazy and zipped by so quick.

I got up and worked on chores. Got a bunch of pictures uploaded to our account on the WedPics app. Chris went out with his brother Clyde to see his new house.

Janelle and Clyde came back with Chris afterwards and hung out at our house for awhile and chatted. They're going to take part in the hand fasting ceremony at our wedding so we were explaining that to them and catching up since it's been awhile. Chris also asked Clyde to be one of his groomsmen. He wanted to ask him months ago but they lost contact for awhile. It's a bit last minute to work out, but at least the groomsmen don't need to know anything too complicated for at the wedding.

White Flag

Tux is extremely talkative today.

He's usually only this talkative when he wants something, but he has all the basics so I'm not sure what he's up to.

He was laying on top of Daisy earlier giving her a bath. It was adorable, and in his defense she really does need one.

I woke up this morning feeling awful. I've been down to 10mgs of steroids for a little over a week now and I assumed it would get better with time. Instead though it's getting worse.

My joints were all ridiculously stiff and painful this morning, and it's not letting up. I don't want to feel like crap for our wedding and honeymoon so I surrendered and went back to 15mgs.

Honestly, feeling like this makes me worry how I'm ever going to tolerate totally getting off of them. Which sucks, because I really want to.

The way I'm feeling today not much is going to get accomplished.

Nerves

I've been diagnosed with a variety of auto-immune diseases/nonsense that causes an even bigger variety of issues. One of my main issues is pain.

I have all types of pain.

Muscle pain, nerve pain.

Honestly, I think the nerve pain is the worst. There's no massaging nerve pain to try to get some relief. It's really hard to find any way actually to soothe it. 

People often ask me to explain how it feels, and the best relatable way I can explain nerve pain is by comparing it to a toothache. In reality, a toothache is nerve pain. When a tooth hurts it's generally because a nerve is damaged, exposed, or having pressure put on it by your sinuses.

Because of multiple sclerosis many of my nerves are damaged and stripped of their protective coating, leaving them much like an exposed nerve of a tooth.

Think about how well your TV or charger works after a pet chews on the cord and exposes the wiring.

The nerves start to misfire causing a myriad of issues, and pain. I get nerve pain from other things too, like fibromyalgia and erythromelalgia. Sometime's it's hard to tell what's causing the pain.

My neurologist put me on Cymbalta which so far has made one of the most noticeable differences in quality of life compared to any other treatments. I started on 30mgs and am up to 90mgs. My new rheumatologist at Jefferson is considering adding Lyrica in the future. Cymbalta has drastically cut down on my nerve pain.

Do you suffer from nerve pain? What gives you relief? What analogy do you use to explain your pain to others?