Did you know I have Multiple Sclerosis?

There I was just living life – wandering along – minding my own business. Working. Falling in love. Going to school a few times. Making a home. Getting married. Life – she was sweet.

Two weeks after my honeymoon I started having petite seizures. I’m always good at writing health things off as something else. I was tired. Stressed. I had just gotten married. There was so much going on! I stumbled into my regular chiropractor appointment, and he was concerned right away. I was having trouble speaking! After determining I wasn’t having a brain hemorrhage, he convinced me that I needed to see a neurologist. (THANK YOU, Doc Halperin!)

My new medical team quickly figured that whatever the issue was – it was in my brain. They treated me with ani-seizure medications that made me crazy – like seriously crazy but stopped the seizures. Blood tests and brain scans. I was stuffed into a few MRI tubes. There were so many tests. I was diagnosed with Multiple Sclerosis in November 2006. Life – she’s sometimes a bitch.

I was lucky. I was diagnosed quickly. Many people struggle with diagnoses for years before getting an answer for the multitude of symptoms that come along with this disease.

MS is not who I am. and MS has not stopped me. MS is something that I deal with every day. Something that I carry around all the time. It is a progressive, degenerative life altering disease. I seem to have stood in the wrong line, like signing up for a class in college I didn’t want to take – but now I can’t withdraw.

It’s been 18 years now. We bought a home in CA, quit our jobs and moved across country. We got new jobs. Made friends. And found new community. There were struggles. We loved fiercely and laughed hard. We tried hard to have a baby. There were tears and sadness. Then Devland was born in 2012. We lost a few kitties and gained few more.  We adopted chickens and lost them too.  Life keeps going along.

I stay healthy. Eat decently. Take my supplements. Never miss a day of medication. And get stuffed into MRI tubes a few times a year. There are days I almost forget I even have MS. Yes – there are some bad days. But most of my days are really good!

I’ve got things to do. I have a life to lead. I have plans, and some holes in my brain and spine are certainly not going to stop me from getting there. They may slow me down at time – but slow and sometimes unsteady – I’ll get there. Although my MS diagnosis does not define me, it is part of who I am. It lives with me. All the time. But come on – let’s go – there is so much left to do!

MS SUCKS. But that ain’t stopping me.

Another Attempt

I keep wanting to make this process easier. I keep wanting to be able to update this thing and make little posts about things from my day or frustrations I’m having. But I get self-road blocked along the way.

With my old phone it was that my speaker wasn’t very good. I’m a horrible typist, and quite often write from stream of consciousness.  I’m much prefer being able to talk out a party and have it transcribed.  Needing to type out all my thoughts and then edit them for spelling and typos was you much.  Ha. Technology had gotten better.  Speakers in our newer phones are superior.  So far so good, it’s writing what I’m saying and not messing up too many things.  Maybe this could work!

I kept forgetting my password.  I would work to get it reset and then a month or two or three would go by and I forget it. I’ve been trying to reset it for a few months, but for some reason wasn’t able to. My kind and patient husband created the site for me years ago and having to go to him yet again to have him help me reset my password for a website don’t really use makes me sad.  But there you go. I admitted to him that I’ve been attempting to reset my password, hit a roadblock. He reset it for me this morning. And here we go again.

I guess I’ll cross my fingers that this is a process I can continue. It seems like I should be able to. This seems minor effort. I’m doing this on my phone after all, and talking into it. The technology is doing all the typing. I remind myself I used to be a writer. I went to school to write. I have outlines and drafts stuffed away in drawers. Seems so silly that it’s taken all this effort for me to be able to write anything anymore. Life gets so distracting doesn’t it? So many other things going on. So many other priorities. But this, I think I would like to do this again. Even if I write down my thoughts, through words spoken into a phone, for no one other than myself.

I took this picture in my backyard this weekend.  I’m felt lucky to not have been too distracted to see. Tiger Swallowtail butterfly sitting on rose leaves.

EMOTIONS!

What could be causing the big tears to roll down my cheeks as I commute to work in the wee hours of a Friday morning? Really – this is a much larger question then you can imagine. When I find myself in that position, the tears rolling down my cheeks and all, which happens more then I would likely admit to anyone IRL. I try to run through the list of potential whys. See if one fits more then another.

It’s early. It’s still dark early. It’s “I get to watch the sun rise each morning.” early. I am over tired. I am always over tired. Being exhausted is an easy way to bring on the tears. It’s as if my emotions are just worn out. They are mixed up and racing in and out. They are not sure when its their time to shine. Cry now? SURE! It’s crying time, right? Isn’t it? SURE it’s totally appropriate. No? Wait. Shit.

I’m a words person. I listen to music and strain to hear the words. I look up lyric to read what is being said. What message is being carried on those notes. A song played at the right/wrong moment can send my head swirling into space. Send my heart into tailspins. I feel deeply – love, loss, anger, want, fear. Was that it? A song trapped echoing in my mind? A chorus constructed from broken dreams?  Eating at my shadowy stability?

Then there is this whole MS crap. One of the super fun potential symptoms/effects/issues that comes along with this disease is that many people have emotions that run a bit wild. They call it MOOD SWINGS. Seriously. I’m 39 and going through MOOD SWINGS. Some people even end up with Pseudobulbar affect (PBA). It causes uncontrollable and often misplaced emotional outbursts, like crying and laughing. I do not have this. I do not even suspect this. But, some folks with MS have that as a reality. I’ll take my occasional mood swings and call it a day, ok?

There is also this thing that comes along for most of us with MS – a little thing called FATIGUE. It can seize hold of me and weigh me down like a pair of concrete shoes. With it it drags my easily limb function, my cognitive ability, and my mental state. Ie; EMOTIONS. Yay. Only not at all.

I am also a 39 year old woman. And for the moment I still have a hormone induced menstrual cycle. But my hormones are waning a bit these days. I am told that this could increase my emotional response to situations. Damn those old hormone receptors. DAMN THEM! Oh yeah – and since I do still currently bleed on a relatively regular basis, it could just be THAT. Whooo!

It is just as likely situational. My husband and I own a beautiful home, which I love. What I do not love is that some of the very important inner workings of the house are about 30 years old. And with that age comes fragility, inconsistency and a high price tag for any repair/replacement needed. We are at this moment experiencing some grief associated with our heating unit that had gasped its last breath. Although we have yet to determine the final cost, it is likely something we will need to put off. Lose numbers fall between 5 and 10K, depending on what it is we replace. The thought of adding a monthly payment from a loan we will inevitably need is heartbreaking. No one wants another monthly payment. We have been doing better financially – feeling good about our bills. So, you know, of course – right?

Things begin to hurricane around my head and heart about all of this. I grew up cold a lot – living on the east coast with brutal winters. Oil heat was a very expensive endeavor and we maintained a pretty low maximum to conserve. I felt cold in our home a lot. I remember dressing under an electric blanket because it was so cold outside my bed. I hate being cold. I hate feeling as if I can never really be warm. I moved 3000 miles away to flee snow and ice. I never wanted to live that way again. A CA weather wimp now I am distressed when its 41 as I leave for work, but know the comfort of a space heater in my office will compensate. As I head home, with temperatures dropping I had counted on a warm home to envelope me. We heat with wood fire for many days during the winter. The highly efficient wood burning insert allows our first floor to reach a blissful temperature. A fuzzy blanket of warm for the air. And while heat rises, very little reaches the bedrooms upstairs. Too many turns. We have fans to draw the air up and around, but it is insufficient at best. We need our heater to make up the difference. To prime the space we awake in, at predawn hours. To make undressing and dressing possible without shivers. To warm a bathroom, tucked furthest from all heat, so a shower can be had with comfort. Our poor dead heater will no longer offer these luxuries. We can get space heaters. Turn them on and wait. The fireplace really is a life saver. But, I will be cold. I know I will be cold. Now, I no longer just hate being cold, I dread it. I am one of the lucky few with MS not as affected by heat. For me – it’s cold. Cold makes my body hurt. My hands shake. My feet buzz and tingle. I have pain. I do not live with much MS daily pain, nothing I cannot push back to the recesses of my brain. But the pain I feel when I am cold – it eats away at me. It burns and aches. And it scares me. It is an in my face reminder that I have this fucking disease and it sure has me. And I do not want to live like that in my own home. Emotions run mountain-range high and threaten to teeter off the cliff.

Where does that leave me for the moment? Driving down 80 in the cold dark morning, dressed in not enough layers, listening to sad songs, ignoring my weak right arm that comes along with periodic ice pick pain, scrolling through funding options in my damaged brain with big sloppy tears rolling down my cheeks.

Grilled Citrus Herb Salmon

This grilled salmon recipe goes together quickly and presents beautifully if you are having company.

Grilled Citrus Herb Salmon

Salmon grilled on a bed of herbs and citrus and dabbed with herb-citrus butter.
Prep Time 20 minutes
Cook Time 15 minutes
Total Time 35 minutes
Servings 4 people

Ingredients
  

  • 4 pieces Salmon Filet Cut into two inch wide slices
  • 1 Bunch Parsley Washed
  • 1 Bunch Celantro Washed
  • 1 Bunch Scallions Washed with roots and uppermost green removed, cut in half, and then juliene sliced
  • 1 Stick Unsalted Butter Room Temperature
  • 3 Whole Oranges Sliced 1/2" thick
  • 2 Whole Lemons Sliced 1/2" thick
  • 2 Whole Lime Sliced 1/2" thick
  • 1 Whole Lemon or Lime Squeezed for juice
  • Salt & Pepper

Instructions
 

  • In a small bowl mixed together the unsalted butter and lemon/lime juice. This should be done slowly - the two items do not easily mixed together. Chop together 2 parsley heads, stems removed; two cilantro heads, stems removed; and one whole scallion. This should be finely chopped to make approximately 1/4 cup of chopped herbs in the end. Mix these chopped herbs into the citrus butter along with salt and pepper to taste. Split the butter mixture into two equal parts and put aside.
  • Heat grill to a medium temperature. While the grill is warming up - layer the sliced citrus over the grill in a single layer. Cover an area large enough to fit the salmon fillets. Try to not leave any holes in the layer. Some overlapping is just fine. Next create a layer on top of the citrus slices of the herbs. Place whole parsley and cilantro springs (stems included), as well as the julienned scallions. This layer should completely cover the citrus layer.
  • Next place the salmon over the herb and citrus layers. The fillets should be an inch or so apart. Using one of the two equal portions of herb butter mixture spread a thin layer over the top of each fillet. Reserve the second portion on butter for after the salmon is cooked.
  • Cover the grill for 15 to 20 minutes, depending on the thickness of the fillet. A very thick fillet may take longer then 20 minutes. You can make a small incision into the center of the filet closest to the middle to determine the salmon is done to your preference.
  • Remove cooked salmon from the top of the herbs. Discard herbs and citrus after turning off the grill and allowing them to cool. Carefully peal skin off the bottom of the salmon and plate over couscous or next to a fresh green salad. After plating, spread the remaining herb butter over the cooked salmon and serve immediately. à table!

Notes

You can really take this recipe in multiple directions. I often use whatever I have on hand at the time. You could try these combinations:
  • Use only the cilantro/scallions for under the salmon and in the herb butter. Use only lime on the grill and in the butter.
  • Use only the parsley/oregano for under the salmon and in the herb butter. Use only orange on the grill and in the butter.

Insufficient Funds

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I was reminded this morning that I had to use my overdraft account last week. My mind got fuzzy and I forgot about an auto-payment that goes through every month. Every month. Automatically. On the same day. Just slipped my mind. Slipped through one of the many holes in my Swiss cheese brain. Thank goodness for overdraft – so the payment went through. No one, other then myself, got notified there was insufficient funds. I was able to transfer back the overdraft amount quickly, but at the end of the billing cycle I get a reminder that I owe the overdraft account the $1.50 fee for processing. Not a huge deal, $1.50. I sent the payment right away, or else it would slip my mind. Again. And on I went, like nothing had happened. Fee paid, life forward!

It got me thinking about an MS quote I saw somewhere online, something about some people feeling like a million bucks when they wake up. And people with MS wake up feeling like there are “insufficient funds!” I know that feeling, that lead legged, brain fog that does not shake away with coffee. Does not shake away ever. Wouldn’t it be nice if you could simple pay the overdraft fee? Use the energy you need now. And at the end of the month get a reminder that you used more energy then you had in your bank and you can simple pay the difference now and all will be forgiven. Forgotten. And life goes on. Imagine!

But, that’s not how it is – is it? There is no fee to be paid simply at the end of the month. End of the billing cycle. No emailed reminder to pay up. It’s an every day struggle to maintain. The alarm goes off for it’s last time in a succession of snoozes. Your eyes peel open, stare into nothing but darkness. Momentarily unsure if the darkness is the fog fighting to stay put or some new eye related issue robbing your vision. Again. Blink. Pause. Sight adjusts. And up you go. Staggering into a somewhat standing position to begin the routine necessary to mask the exhaustion and discomfort from the outside world. Squint painfully into the just turned on bathroom lighting and assess the situation for the day. Good day? Bad day? Or just the usual insufficient funds.

Dev Quotes

“We drank out of garbage!” (Laughing and giggling like crazy)

“…my girlfriend is pret-ty niice…”

“Not any more, you don’t win…” (All mad, throwing my stuff on the ground after I won the game…)

“Here’s my menu and it says ‘No pee is waiting’.”