Me-centric and the Rest

I like the term ‘Me-centric’, I believe I came up with the word of the week. Unlike egocentric which the dictionary says it means thinking of oneself, without regard for the feelings or desires of others. ‘Me-centric’ is a bit milder than that. Me-centric would describe most all people. In this day and age we can be a bit self-absorbed. I do not intend that it in a mean way but we have our health, we have our jobs, we have our goals and so on. All of things in our lives that we do, feel, think and are is our ‘ME-ness’.

There is another part of ‘ME-ness’ that may sound awful but everyone’s favorite subject in life is themselves. Think about it, of all the things in the world you can be an expert on philosophy, art, seaslug biology, macrame, etc. the subject that you know more about than any other person in the whole entire world is you.

It is not all about you…and you know it.

With my illness I am definitely into my ‘Me-ness’ and I have to be. I have to be always aware of how my body is feeling. Is it too warm, did I take my pills, how much water have I drank, is the drop-foot increasing, and so on and so forth.

There are times when the ‘Me-centricities’ have to be set aside. Today is one of those days. I am sitting in the waiting room at the hospital as I write this. Nana is having her left knee replaced and she needed me. I picked her up at 5:10 this morning and brought her to the hospital with all of her stuff. This is more important than me. Does not matter that I have been unwell. It does not matter that yesterday my head hurt so bad that I kept no food down. None of that matters. She matters.

In our lives there is the ‘Me-ness’ and then there is ‘the Rest’. The Rest is the important stuff. The Rest is listening to you son drone on about Minecraft because it is important to them. The Rest is dragging your neighbor’s trash can back after collection because they have a hard time doing things. The Rest is when you say yes I can watch your kid for you while you go to an appointment. The Rest is putting others needs before your own.

‘The Rest’ is what makes us human. If it was just about you and nothing else there is no reason to even be here on Earth. It is our interactions with others and our environments that make a life. There is no point to life if it does not better, aid, or have an impact (great or very small) on this world. We were created with the capabilities to learn, love, adapt, and nurture.

So when we are busy in our lives with our ‘Me-centricities’
let us all try try to remember all ‘The Rest’.

The Terrible Horrible Awefulls

For the last four days I have been miserable. Not the ‘run of the mill’ regular miserable-that I am used to. I has been the ‘please take me out and shoot me’ miserable. As I have talked about in the past I suffer from migraines. I have for many years. For the last week I have felt terrible pain in my skull. The blinding pain that does not ease up with over the counter pills, dark rooms, and quiet. Today the 2nd of May is the first day I have been able to eat and keep it down. Every day prior I would vomit numerous times whether I ate or not. I don’t know what is causing it.

Yesterday I called to get a refill on my thyroid medicine and they ordered blood tests to be done prior to refilling. Those tests showed that my hypothyroidism has recently gotten far worse. They want to double my meds and then go up from there. I have no idea if that could be contributing or not.

Now I know I have a decent amount of stress in my life. I also know that stress can contribute to migraines. So all the things I have to do definitely could contribute to my stress and the last two weeks have had a bit more than normal. My two eldest boys were preparing for their church confirmation and there was a lot to do. There was all the preparations for before the day down to the ties they wanted to wear. Then there was the post service party to plan and food to prepare for the family members that were coming.

Then there is my grandmother she has decided that it is time to replace her left knee. As her ‘favorite’ it has become my duty to take her to her appointments and make notes and lists and schedules for all preoperative and postoperative things. We have got almost all of our ducks in a row for this, there are still 3 more doctor appointments and a tour of the skilled nursing facility she will stay at after leaving the hospital. I will take her to surgery at 5:30 in the morning and stay there the entire day. It’s a lot to keep straight.

Everybody has stress and everybody has things they have to do, I’m certain many people have more than me. So is stress that is contributing my migraines? Is it hormones? Is it just lack of luck on my part? Anyway you look at it they suck and then you just have to suck it up.

Get your head out from under the covers,
pull your big panties up then just grin and bear it.

wonder woman


Too Busy to Accomplish Anything

I started writing this blog 5 weeks ago and this is is why it is only now posted.

I simply cannot be the only person who feels like they never stop. I am constantly going here or there. Fielding phone calls and scheduling appointments. Taking kids to this or that. Playing chauffeur certain days of the week for my 84 year old grandmother and mother, a stroke victim. The old lady’s usual of getting groceries, going to doctor appointments, picking up meds from the pharmacy.

When I have an occasional morning free I have my water aerobics class, that I miss more often than I care to. That class is one thing that makes me feel good and helps with my stamina. Wednesdays are the church’s chancel choir practice. Weekends are full of teaching Sunday School and traveling to visit various family members who live across the state. My eldest has early morning jazz band rehearsals 3 days a week. There are all of the school activities my boys have throughout the year. There is after school homework and projects to be done. Dishes, laundry, bill paying, budgeting, etc. etc. etc.
There are so many things I want to do but never seem to get to do. I always feel like I’m being pulled into doing one more thing after another. 2016-04-28 15.42.22.jpgFor example…I have this dress I started making 5 weeks ago that is nearly done but has been waiting for 3 1/2 weeks just for the zipper to be put in for completion. I wanted to wear it for Easter but as things usually go there was no time or energy left to get it done. During that time leading up to Easter I had to make pinatas for the Easter egg hunt at church. I was also asked to fill in for a dear lady who was ill for the church choir. That meant Wednesday evening rehearsals to do a cantata for every Sunday service for the month as well as Good Friday.

There is the projects around the house-repairs, exterior painting, yard work, etc.  I have been painting the window trim on the house a couple at a time because there is no way to do them all at once and they still need their second coat. I have been earnestly planning to finish the kitchen remodel job started two years ago, but the crown molding has yet to be put up. I have the moulding and my measurements but haven’t seemed to have the time to cut it and attach it.

Last week I had an order f20160427_151753or 250 light20160427_151847.jpg house cookies for the local elementary school…that wholly encompassed 3 days of my life. Don’t misinterpret what I’m saying. I am glad to be able to do things when I am well. It makes me happy to be able to help, and I feel really accomplished when I am able to do things for a good cause.

It just seems as if there is simply too much to do and not enough time to do it. Then after you do the things that you cannot neglect, you are so tired there is nothing left for the rest of it. It cannot be right that after a day of running errands, etc. and making supper for your family there is nothing left of ‘you’. The you that wants to talk with them about their day or crawl on the floor to do puzzles. The you that wants to talk with your handsome husband about the day you had. Sometimes even sitting up to watch a movie with your family is beyond you. Often times I am so beat that I can hardly hold my head up.

I know other people have this same issue, but (and I may be wrong) with Multiple Sclerosis it seems like everything is a uphill battle with overwhelming exhaustion. Walking through the store is like trudging through knee deep mud, every step is an exertion. I wake up in the morning with fatigue even after a full night’s rest but unfortunately it doesn’t get better through the day. Copious amounts of coffee and cocktails of prescriptions the doctor gives don’t make much of a difference.

I guess what this rambling all boils down to is this…




Jumping Out of My Skin

A few years ago I started to have issues with startling at the drop of a hat. I can be going about my business and somebody drops something sending me into a near cardiac. Granted when I’m deep in thought the whole world drops away and I’m completely oblivious to my surroundings. That being said it hurts when I am startled, literally it causes me physical pain. Like a electric shock in my chest. It is triggered by sound and sometimes by not noticing a person is approaching.

Now this is not a continuous thing…thank goodness. If I was constantly startled by every noise it would be crippling especially with 3 children and their friends rampaging through the house. Seriously at any given time there can be around ten kids coming and going, ringing doorbells and making noise.

This extreme startle reflex I discovered is called Myoclonus. In my case it is stimulant sensitive Myoclonus. Multiple Sclerosis has so many and varied symptoms. Each and every individual stricken with MS has a separate experience with the disease. It is not a one size fits all thing. Of the symptoms many suffer Myoclonus is one that can be overlooked or not readily associated with MS.

I wanted to know what causes Myoclonus and found that there are many different causes but in regards to Multiple Sclerosis it is likely the result of brain or spinal lesions.  As with everything to do with Multiple Sclerosis it is not fully understood what causes this but it is believed that in cases of stimulus sensitive Myoclonus, the brain becomes overly sensitive to the signals caused by external stimuli such as sound.

Myoclonus according to the National Institute of Neurological Disorders and Stroke
It refers to sudden, involuntary jerking of a muscle or group of muscles. Myoclonic twitches or jerks usually are caused by sudden muscle contractions, called positive myoclonus, or by muscle relaxation, called negative myoclonus. Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Myoclonus sometimes occurs in response to an external event or when a person attempts to make a movement. The twitching cannot be controlled by the person experiencing it.

In its simplest form, myoclonus consists of a muscle twitch followed by relaxation. A hiccup is an example of this type of myoclonus. Other familiar examples of myoclonus are the jerks or “sleep starts” that some people experience while drifting off to sleep. These simple forms of myoclonus occur in normal, healthy persons and cause no difficulties. When more widespread, myoclonus may involve persistent, shock-like contractions in a group of muscles. In some cases, myoclonus begins in one region of the body and spreads to muscles in other areas. More severe cases of myoclonus can distort movement and severely limit a person’s ability to eat, talk, or walk. These types of myoclonus may indicate an underlying disorder in the brain or nerves.

There are drugs you take to help with this and I find it most helpful for me to be as aware of my surroundings as possible. I still jump here and there but at least I am getting more used to it. More importantly those around me know I have this issue and no longer get upset that I freak out when they come around the corner unexpectedly. If nothing else I am sure that I’m entertaining to watch.  😉

My Meandering Mind

We are all busy with what life has going on for us. Jobs, kids, budgets, chores, to-do lists of all kinds and schedules can keep our brains working overtime. It can be a real effort to keep it all straight.

I gather it is a common occurrence to lose your train of thought or to misplace your keys. Then again…I think for some of us it may be a chronic issue.

Everyone has walked into a room and then wondered why you came in there in the first place. The other day I traipsed through the house to the kitchen with great determination. Once I got there I had no idea as to why I went there. There had to be a reason I went, right? Looking around the room I saw nothing that triggered why I needed to be in there. So I left feeling a bit baffled.

Returning to the other room hoping for a clue and finding none I gave up. After sitting for two minutes it came to me that I wanted something from the junk drawer. Getting up I headed back to kitchen certain that once I looked in the drawer I would instantly remember the ‘thing’.

On the way my phone rang and I stopped and spoke to the person calling for two to three minutes. After the call ended I just stood there. What was I doing again? Oh, yes..junk drawer.

Five minutes of rummaging through paperclips, child safety locks, broken action figures(to be fixed…eventually), bread ties, keys to God knows what I was no closer to finding out what the heck it was. And to this day I still do not know what I was after.

The same thing happens with conversations. On occasion I will be going on a nice roll and then hit the mental wall. Sometimes it is a speed bump but other times it is a wall. I’ll be darned I was trying to make a point or tell a story and *Poof* it was gone. My wonderful husband and friends are used to this and they either wait for me to find the thought or they help me remember where I may have been going with it.

The one that really ticks me off is when I lose a word. Now this word is not unfamiliar to me and I have probably used it a million times but at that moment I cannot pull it out for anything. I really believe that my mind is full of sink-holes or quick sand. The thought or word is happily skipping along my grey matter when suddenly it is sucked down and buried.

Then there is the times my brain switches gears from one thing to another leaving whoever I am with a wee bit lost in the lurch. We will be going along just fine when suddenly I see something or remember something from prior and it will instantly fly out of my mouth. My best friend has had me do that to her so many times now it is now a joke. In the animated movie “Up” there was this talking dog and it is me in a nutshell.

So during those silly moments either I or my dear friend will just holler out “Squirrel!” 

It is far more embarrassing having those moments out in public or with people who are less used to your whatever you call it-Cog Fog, Brain Farts, Senior Moment, Space Out, Meandering Mind, or Case of the Dumbs. Over the years I’ve gotten used to it and can laugh it off but that doesn’t mean I like it.

I take solace in the fact that I’m not the only one suffering from moments of mind flatulence. 

Mom Insomnia

This is from Scary Mommy and it rang true to what my brain does every stinking night. Aaaaahhh!

Thoughts That Go Through A Mom’s Head In The Middle Of The Night

Motherhood Meets Insomnia: A Sleepless Mom’s Thoughts

It’s the middle of the night and the rest of the house is asleep—except me. If I get back to sleep right now, I will still be able to piece together something that could pass for a night’s sleep instead of nap.

How is it that Slumbering Hubby can sleep so soundly? I wish I could sleep like that. Why does motherhood so often seem to be synonymous with insomnia? He looks so peaceful, and kinda sexy too. Maybe if I snuggle up close, he’ll wake up. We should cuddle more, and go on a date, for goodness’ sake. We haven’t been on a date in forever.

Maybe we could get a sitter Friday night and see that movie that came out last month. What’s the name of it? Everyone’s been talking about it. Oh, what the hell is the name of that movie? The one starring…oh, what the heck is her name? The girl who’s married to Ryan Reynolds. She was on Gossip Girl…the one with the cool hair. Oh, good grief, what the hell is her name?

I should wake Slumbering Hubby up and ask him. He would know. So would that friend who moved away last year who I haven’t talked to in ages. I wonder how she’s doing. I should email her. Maybe we can plan a girls’ weekend sometime soon.

A girls’ weekend?! Puh-lease! I can’t even manage to talk on the phone with my BFF these days. Come to think of it, I haven’t heard from her in a several days. I hope everything is OK. I hope she’s not mad at me. Why is she mad at me?!

Calm down, she’s probably just busy, or something horrible happened! What if she’s in the hospital or her kid broke his arm and I had no idea?! I’m a horrible friend. I should call her. I’ll text her now.

Oh, what the hell is the name of the actress?! I used to know this stuff. I used to be able to tell you about the latest celebrity couples and which ones were about to get divorced. I used to know fun things and do fun things too, like go to movies and eat at fancy restaurants and dance at hip nightclubs. Now, I can’t manage to see a movie before it goes to DVD, and I can’t remember the name of the actress with the gorgeous hair.

Maybe I should grow my hair out again, or go blonde.

Or maybe I should go au natural. You know, embrace the grey. Why do women need to fit some kind of societal ideal of beauty anyway, for heaven’s sake? We’re beautiful just as we are. Didn’t Julia Roberts stop shaving for a while? Okay, too much—that’s where I draw the line. Come to think of it, I’m due for a waxing so I might as well get a quick color touch-up while I’m at it.

The dog sure does feel cozy nestled up against me. But—my God!—what is that smell? Did he fart? Or did he shit in the corner again?

Ugh, I wish the damn dog would get off me. He smells and now I have cramp in my leg. I should stretch more. I should do yoga. Everybody does yoga. All I hear is down-dog this and sun-salutation that. Blah, blah, blah. Then again, maybe if I did yoga, I wouldn’t have middle-of-the-night leg cramps. Maybe if I did yoga like Slumbering Hubby (even he does yoga!), I’d be blissfully snoring away. Yes, yoga. That is the answer to all of my problems. Yoga.

Ahek-huck! Ahek-huck!

What’s that noise? Is one of the kids coughing? Oh, great. He’ll probably wake up with a fever, all snotty, coughing up phlegm, and have to stay home from school. Shit, I have so much work to do tomorrow. I can’t afford to stay home with a sick kid. Come to think of it, my throat has been feeling a little scratchy lately. I hope I’m not coming down with something too. Is it too late to get the flu shot?

I need to remember to get oranges, Airborne, and anything with 500-percent vitamin C from the store tomorrow. I should probably throw in some vegetables, too. Maybe if we ate healthier, we wouldn’t be plagued with flu germs. When was the last time we had vegetables with dinner? Last night was pizza with a side of pizza. The night before that was subs. Wait, there was some lettuce on the subs. That counts as a vegetable, right?

Great, an hour has passed. I’m still awake, and I still can’t think of that actress’s name. What the hell is her name? I think she just had baby. She probably fits right back into her size 0 jeans though. I bet she does yoga.

I need to close my eyes and relax. Take a few deep breaths. If I get to sleep right now, I’ll get enough sleep to qualify as a long nap. I should try that meditation trick I read about a few months ago. What was it again? Something about inhaling to the count of 7, holding for a count of 7, and exhaling to the count of 7.

Inhale, one, two, three, four, five, six, seven. Hold, one, two, three, four. Gasp! Shit, I can’t hold my breath for seven seconds. Who can hold their breath for seven seconds? That’s witchcraft.

Maybe I should start meditating. That way when the kids are bickering and whining, I can just look at them with a regally serene look on my face instead of screaming at the top of my lungs. They might say, Mom, why do you have that weird look on your face? But I’ll just smile and think, I’m meditating. I’m fucking meditating.

Breathe in. Fuck this shit. Breathe out. Fuck this shit. Now that’s a meditation I could get on board with. Maybe that would help me deal with that difficult client pestering me to finish her project. She’s never going to be happy, and she’ll complain to my boss, and I’m totally going to get fired. And then we’re probably going to lose our house and car and have to move back in with my parents. Oh my God, we’re going to have to move in with my parents!

Well, maybe that wouldn’t be so bad. The kids would see their grandparents more often. I wonder how my dad is feeling. I should call him. I wonder how my mom is doing. I should call her. I don’t call home enough. I’m a horrible daughter. I should tell them I love them more.

My kids probably won’t call me either when they’re grown up. I should tell them I love them more.

Blake Lively! That’s who it is! I wonder if she calls her parents. I wonder if…

That’s it! I know how to finish the client’s project. It’s brilliant! The client is going to love me. My boss is going to love me. My troubles are over.

If only I could just get a little sleep. Maybe I should just get up and start my day. The alarm will go off in 30 minutes anyway. I’ll just close my eyes for a couple minutes and then I’ll get up.

27 minutes later…

“Momma! Time to wake up! You are such a sleepyhead.”

Sigh…how many hours until I can go to sleep?

And what was that great idea I had in the middle of the night? Something about Blake Lively?


Typhoid Mary Syndrome

Now I don’t know if this is the right thing to call it but over the years I had a distinct feeling that I was the Typhoid Mary of neurological or other diseases. After my diagnosis of Multiple Sclerosis it seemed that people I knew started to fall like dominoes with disease.

A friend and groomsman at my wedding got diagnosed with Multiple Sclerosis. A real kick in the teeth because he was young married and with children. He is doing wonderfully well, but in my mind he was never to have such a thing.

Then my dear neighbor friend of years had health issues and was diagnosed with Parkinson’s disease. Just in her fifties and now burdened with an unfair ailment. She is doing well with it but has to be careful not to over exert so our family is so very happy to help with yard labor and snow removal.

One of the sincerely sweetest girls I have known was then afflicted with another disease. I had gone to college with her, attended her wedding and met her handsome little red haired boy. This again was something I found unfair, she was diagnosed with Lupus and Fibromyalgia.

Then another dear friend, this time from my high school days was diagnosed with something terrible. Chiari Malformation  is a terrible thing she has had surgery to help with the brain herniation through the base of her skull. Of all things why this?

Withing a couple of years of my diagnosis another person dear to me went through too much health wise. She lives across the street and after so many things cruelly put upon her she now has Raynaud’s disease.

This is the short list there are many more but I have the ‘brain fog’ today. It may be that once you are diagnosed with something your more attuned to other’s afflictions. It could be that as you age and everyone else ages these things become more commonplace. But you can see how I had possibly felt a wee bit like Typhoid Mary for a few years.

All I know is these are wonderful people who do not deserve to be afflicted but they are also blessed with strength and perseverance. They are to be loved & honored and are a model for anyone at any stage of their lives. ~Love you all