Waking up to something new…

There’s nothing more beautiful than waking up to a new day. It’s something we should all be thankful for! Rise and shine sleepy head!

In my youth I was a night person, and I remember my Dad coming into my bedroom saying “Lights were supposed to be out an hour ago!” He would find me with a book in hand. I would turn off my lights and listen for my parents bedroom door to shut. I would wait a good half hour before turning my light back on so I could start reading again. I would get in trouble for this, if Dad caught me doing it after he told me it was time for bed.

Maybe they wouldn’t have had a problem with it if I had been the type of person who woke up easily in the mornings. But it was always a chore for mom to wake me up for school and/or church. Once I was up and around, I was fine (just don’t talk to me)… but getting me to that point was not good.

Then something happened in my 40’s, because mornings started to become a beautiful adventure. I would bop out of bed, open my curtains, and try to spot a bird (I’m a HUGE bird lover). I would make my coffee whistling or humming. I didn’t have cable, and I never missed it. I had my books and that’s all that mattered, and eventually I had my Georgie (my cat), and he didn’t make me talk.

In my late 40’s I became a morning AND night freak… because this is when I began my inability to sleep. At the time, I thought it was just because I was getting older… but now I realize that I had Lupus (which I hadn’t known) and that my symptoms were getting worse. As of now, I’m lucky if I get 4 hours of mixed sleep. It’s difficult because I have problems with my CNS (Lupus related), and for those of you who don’t know what that is, it’s your Central Nervous System. Your CNS is the part of the nervous system consisting of our brain and spinal cord.

The first signs of my CNS becoming affected is upon waking up in the mornings I was extremely disoriented. And when I got up to walk I couldn’t walk straight. I would literally run into walls. I would drop things. I would spill my coffee. Having issues with your central nervous system is different than just your occasional light headedness, etc…. it’s more in depth than that. But living off around 4 hours of sleep a night doesn’t help my brain function. With this I lose my train of thought. I mix my words up. It takes a long time for things to register. I get confused easily.

I get a lot of jokes when I can’t grasp something, or things come out wrong. But the truth is, that to me it’s not very funny. I understand that people just think I’m a dork, but now that I know it’s a serious issue, it’s scary at times. Especially when I still have a brain, I can still remember, and I know what I want to say… but at times it comes out inaccurately. For me, it’s actually easier to write than to talk, however my writing style and grammar suffers.

I also have issues with my lungs (which also affects my brain) because I can’t get enough oxygen. This is because of smoking most of my life, but also because Lupus is causing me to have continual pleurisy. I get it VERY often… in fact I have it now. When I have it I sigh a lot, because it’s painful to take a deep breath, and also because I shallow breathe, because it’s painful. So oftentimes people think I’m aggravated with them, or bored. I yawn about 30-50 times a day, and I’m not joking. I yawn all the time… to get oxygen. Pleurisy is inflammation of the pleura. Pleura is the two-layered membrane surrounding the lungs. Fluid forms and escapes the membrane which is pleural effusion. This causes pressure on my lungs, which is why it hurts to breathe. It’s not fun.

Today I was thinking about how I wake up to what seems like something new everyday. This was exciting to me, but now not so much. This morning I woke up humming to the sound of my coffee maker. While I was waiting for my coffee, I fed our animals. Then I grabbed my hot coffee cup (which feels so good on my cold fingertips). And I took Harley, and my devotional and headed out to our patio. The birds were chirping which totally excited me. Then one flew up to me… birds do that to me occasionally, and I like to think its because they just have a sense of how much I love them. I then I reached down because my ankle started itching. I felt a lump forming. What the heck? Here begins my story of Waking up to something new. I have found with Lupus that you quite literally wake up to what seems like something new everyday. I say it feels like it, because it’s often and it’s exasperating.

Here’s a photo of my ankle… often times lumps are hard to see on me because I’m so pale… but here we go:

bumps 3

There is also a bruise forming in the center of it, and a red spot next to my lil mole. Mind you, there is no reason for it. I assume the red spot will be a bruise soon, because I bruise everywhere, daily.

Ok… no biggie, on with my day I went.

About 10:00 AM I went to the bank, and then off to the store to grab some necessities. While I was in line, I struck up conversation with the elderly lady behind me… who I wanted to adopt by the time it got to my check-out. While I was unloading my stuff, my shin started itching. So I reached down to itch it and felt a large lump. The kind of lump a normal person would get from knocking their shin into something HARD. Ok, weird… I did NOT knock into anything. So I decided to investigate it when I got home.

This is what I found. Again, the lump is hard to see due to my freaking pale skin:

bumps 2

And look at the beautiful bruise! Such a nice surprise. Ok, and there’s another red spot, nice.

I went to brush my teeth after my coffee, because my gums bleed now too, and the taste is TERRIBLE. This is yet another problem with Lupus. One of my Lupus acquaintances teeth actually started crumbling, and this TOTALLY freaked me out!!! So now I’ve been brushing my teeth even MORE often, flossing, and oil pulling with coconut oil. I’m determined to up my oral hygiene habits to a few times a day, instead of only twice a day.

We had visitors today, and that was awesome! But when they left hubs went right to bed. So I decided to read! Yay!!!

Well I grabbed my book, and my normally tiny wrist (it’s the only thing tiny on me, lol)… hurt. I looked at it and it was starting to swell. Ugh:

bumps 1

It also looks like it’s going to bruise. Again, I didn’t hit it. The most I did was lift sweet potato and sea salt chips to my mouth.

So once again I woke up with something new, and I’m slightly annoyed, but I’m going to roll with the punches. Something I’m learning to do.

Did I mention that I visited with my sister and brother-n-law and never mentioned this? I’m pretty proud of myself, because the entire time we sat with them it was hurting and I wanted to itch. I’m learning most people don’t want to hear about your issues. And I’m so thankful for my blog, so that I can get everything out. It’s not good to hold in your pain physically or mentally. It’s also hard to hear about other peoples aches and pains, without commenting on your own (I’m talking in general, not about my in-laws… just to be clear). Anywhoooo,  I’m learning to zipper my lippers. I don’t want the focus to be on me and Lupus. I want the focus to be on others, and this beautiful life. I want to find the daily blessings and often times it’s hard to do that with Lupus… you literally need to make yourself.

But I have to say, it sure does feel good to have a blog now. It sure does feel good to have a place to go and get it all out knowing that others who are going through this can come here to vent if they need to and to feel acknowledged.

I’m keeping all of you who are in chronic pain and chronically ill in my prayers, and sending you gentle hugs. God bless each and every one of you. I know it’s hard to be so sick, without looking sick, and my heart goes out to all of you.

That’s it! That’s all I got for tonight or this morning… however you want to look at it.

God bless, Su

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