My Journey to MS Diagnosis... or Not

short-term memory

2011-09-01T09:46:00.000-06:00

Sometimes I feel totally "normal" and it makes me question if I ever really had it as bad as I claimed. I second-guess myself and think, "Maybe it was just bad anxiety."

And then I will get little reminders. The shakiness starts creeping back in and it's an "oh yeah, this was pretty rotten" feeling. Or the stuttering. When I start slurring and stumbling over my words again is when I really remember how bad it was. Not that it has recently been as bad as it was (February), but just recalling that it wasn't "all in my head".

It's been off and on for the last few weeks. Stress definitely makes the symptoms worse.

Sunday wasn't great. I forced myself to keep on my running schedule, even though my body wanted to sleep and laze around all day. I think it is helping. I had a PA tell me that if I had enough energy to exercise for an hour OR fold laundry and vacuum the house, that I should exercise. I'm trying to remember that.

Yesterday I dropped a bowl at Anthropologie. I wasn't juggling it or messing around. Just standing in line and it slipped out of my hands. Which of course made me even weaker. (side note: I did try to buy it. they were very nice and didn't charge me. They also brought me a new bowl to the counter.)

This is where I want to swear. But. I'll just write: DANG! this is frustrating.

a

what saves me

2011-06-15T12:41:00.001-06:00

from Cassandra's blog

A couple of months ago, an artist invited anyone to collaboration. Cassandra Barney paints ExVotos, which as she explains means "votive offering". They are personal stories, painted on tin, hung in public to share and inspire. The title of this series would be "What Saved Me."

I wrote to her:

I've tried getting expensive manicures, wearing pretty rings and bracelets, and applying cream guaranteed to make my hands soft and silky.

They are my empty calories when my soul needs to be filled.

The dirt and stains from my small garden; the paint from updating a tired piece of furniture; the dust from using MY power tools to cut wood into shapes; the rope burns from attaching a swing to the big tree in the backyard; scratches from rearranging the house.

The dirtier my hands, the happier my heart. It is rarely about the preparation or even the finished project. It is the mess, the dirt, the paint, the stains. It is knowing that I can. Because sometimes I cannot. Sometimes this mysterious disease snatches my hands' abilities for too-long moments. Occasionally, my short and stubby hands shake or lose their sensations. I feel that these hands of mine are directly linked to my soul. They do not define me, but they save me.

Months have passed, I didn't think anything more about it. I figured she got a lot of great stories. And today in my inbox she emailed me the painting she did about my story. Along with a picture, she sent a sweet email which included this:

"I loved your story because it's mine as well. I have come to equate success with meaningful work. My hands represent that. Thank you so much for sending it!"

I love the fruits of labor

Somehow I have to convince Alan to get me this for my birthday, even though I already bought myself the expensive birthday/anniversary gift.

I love this.

a

no diagnosis

2011-05-05T17:12:00.000-06:00

oh well, right?

I decided a few months ago when the neuro told me that nothing on my tests revealed an MS diagnosis that I needed to let it go for a while. Emotionally let it go. Stop wondering what was wrong with me. At least let it go from consuming my thoughts.

I need to see other doctors, I know, but for right now I need a breather. I need a few months with no doctor appointments, testing, etc looming on the docket. I need to take things off my plate, say NO to some things, feel the dirt between my fingers, walk in the spring nights, and let it go from my mind.

For the most part, I have felt the symptoms subside. Which makes me think that stress was a bigger indicator than I realized (and as VickiC commented in the last post). I've had some symptoms come back lately, but I'm just trying to LET IT GO. I'll return to it in a little while, but for now...

LET IT GO!

a

today or the uncertain tomorrow

2011-03-08T08:12:00.001-07:00

I have an appointment to visit with the neuro today--the actual neurologist and not one of his assistants. I have a few questions that I will write down and have in hand to ask him. It's my once-a-year shot to get some answers about this potential diagnosis.

After 15 months of no definitive answer, I am not expecting any breaking news today.

If I could get a diagnosis today, would I want it?

That question crosses my mind multiple times a day. If I could just take this problem, get an answer and move on, would I be more content?

Sometimes. Sometimes I think it would be preferable to get a diagnosis of some treatable disease. A big HOLY COW YOU HAVE BLAHDIDEEDAH. LET'S GET YOU INTO SURGERY STAT. And two years later, I can tell you all how I have been Blahdideedah-free for 6 months! It had been a hard battle, but I feel that we have won.

Sometimes I think it would be preferable to have a visible wound--a car accident that left me unsure if I could ever walk again... and of course I would. But sometimes I would rather this problem not to be literally in my head.

Most of the time, though, I remind myself that I have no control over what diseases I get and how quickly (Charlie Sheen-types aside). That the physical and emotional trials I get in this lifetime are uniquely mine for purposes only God knows.

Just when all seems to be going right, challenges often come in multiple doses applied simultaneously. When those trials are not consequences of your disobedience, they are evidence that the Lord feels you are prepared to grow more (see Prov. 3:11–12). He therefore gives you experiences that stimulate growth, understanding, and compassion which polish you for your everlasting benefit. To get you from where you are to where He wants you to be requires a lot of stretching, and that generally entails discomfort and pain.

~Richard G. Scott, article found here

Who am I to complain? What purpose would complaining serve?

I think about a conversation that I had with a friend of mine who had discovered that her husband had been having an affair and was leaving their family. At the time, Alan had been recently released from the hospital with a heart condition called myocarditis and we were told it was the explanation for over 20% of all sudden deaths in young adults. "So, be careful," they'd say... and then I thought my husband would die.

My friend commented that she would prefer her husband to die than to cheat and leave her family. She thought that death would be preferable to her pain. I agreed, at the time. But later, when I was very much alone (Alan was working in a different state at the time), I thought that I had no idea which was worse. I could give hundreds of answers for both sides being "worse" than the other. Mine was "better" because my husband did not die. Much more preferable. But how do I know what would be harder for anyone? Even if I went through both sides, my journey will ALWAYS be different than someone else's. Always.

And if I am being real with myself, here, then I should also admit that any trial I have pales in comparison to what many people go through. We with blogs and we who read blogs are already 80% wealthier than most of the world. We lament about our children getting stitches, the extra LBS on our midsection, not finding fulfillment in our jobs and home life, our hair not being exactly how we like. Don't you ever want to shake yourself and say, "SNAP OUT OF IT!" "Get over yourself and be grateful for an incredible life!"?

I do.

So really, WHO CARES if I get a diagnosis or not? It would be great, but it won't change the world. It might make my tiny world shake for a moment, but then I've got to pick up the rubble and build it back better and sturdier than before. The tiny shakes in my overly-blessed life are rarely enormous quakes. They are calls to stretch and grow.

Bring it on, Doc. Let's get ready to rumble.

a

linking to THIS CONVERSATION STARTER

wha wha wha wHA

2011-03-03T09:16:00.000-07:00

photo

that is the sound of the FAIL HORN.

I got another MRI and a lumbar puncture (spinal tap) and the results show nothing new. Nothing conclusive. Nothing that "would indicate why (I am) experiencing (my) symptoms" says the assistant to the neuro.

I may have cried for a day. Let it be known that I fully expected it. I thought I had an 80% chance of getting no results. But it still STUNK. I want to move on.

I have felt, though, that when my symptoms are at their worst, I recoil from this blog the most. Which I find interesting, because I started it so that it could be something that FUTURE potential MSers could have to feel comfort from something similar/recognizable. Sometimes I feel like I am the only one who doesn't get a quick diagnosis and put on medical therapy to slow the delineation. I know it's not the case, but it is the loudest voice in my head sometimes.

15 months in, no definitive diagnosis.

This last month has brought about a new something. My left lower eyelid twitches. It started out twitching a couple of times every few days, then a few times a day, and now it twitches a few times an hour. Sometimes every 10 minutes or so. It's annoying, to say the least.

Did I mention my fingers? I think I did. My fingers get cut sometimes without me knowing. I won't notice until I see blood or feel a sharp pain suddenly when I am sitting down doing nothing.

I haven't slurred my speech in a while, so that's a good thing. My cognitive seems to be back to more normal. Good as well.

There you have it. The update. I go to the neuro next week. We shall see what he wants me to do next. Perform a fire stunt with hula hoops, perhaps?

a

for remembering

2011-01-27T12:47:00.000-07:00

documentation so I can recall at my next neuro appointment:

Last week I had THREE cuts (two paper, I think. and the other blade of some sort?) on three separate fingers plus ONE blister/splinter in my thumb.

I didn't notice that I had done anything or how long I had had these cuts until Thursday night when I suddenly felt the pain from them all and saw blood from one. No idea.

debile

2011-01-19T19:45:00.001-07:00

me, today, with my outlook on the future

Ability derives from the word able.

From what word does debility derive?

The dictionary say it comes from the Latin word debilis which means weak. Or the french word debilite.

I am tired of talking about my weakness. I am more tired of feeling weakness, but I am definitely tired of writing/talking about it. I am trying to look forward, taking whatever this is that God has seen fit that I handle/conquer and MOVE on. Of course it has changed me.

It has become more me than I would ever like to admit. It has changed the projects I tackle, the potentials, the futures, the dreams, the hopes. But, what can I do about it?!

Rien. (nothing)

I started this blog because I felt like I had nothing to read about over a year ago when the doctors first told me that I might have Multiple Sclerosis. I'm still in the might section, albeit the percentages of might are rising more and more to the categories of most likely and pretty stinkin' much.

I wanted so badly to read about someone going through something similar to my experiences, so I felt compelled to be THAT person to the next.

In a couple of months I get another round of MRIs and a spinal tap. Woot woot!

Until then, I don't know what else to write about except:

Still feeling debility in my arms and hands.
Sundays are the worst.
Stress seems to be a big factor.
I'm trying healthy diets to alleviate symptoms.
Exercise, too.
I stutter sometimes.
And I drop words/phrases/sentences/thoughts/ideas.
I've felt my foot dragging on occasion, but not much.
My eye (left) twitches right before my speech is affected, but then stops.
I like to sleep more than ever.
I feel lazy as all get out.
I wish I could push it harder sometimes, but I'm learning I have new limits.
I don't want the diagnosis, but then again, if it comes back negative I think I will be more worried because then I will think "What the world is it?!" IT is obviously SOMETHING, that much has been agreed. If I think about it too much, then I get anxiety which feels like stress and leads to more debility.

If anything changes, I will let you know. Until then, the less I talk/write about it, the more ABLE I feel to tackle the new ME!

Keep in touch.

a

explaining me to me

2011-01-12T14:10:00.000-07:00

source

When do you give up the disease as being part of your explanation? Who am I? Why can I not do certain things? Why do I feel that I should say NO to that project?

Does the disease help explain some of the reasons? yes

but is it part of my definition?

I don't know.

I would love to say that illness doesn't define me. You know, "I {might} have MS, but MS doesn't have me!" or "I am not my body/illness!" Come on, though. All I want to do sometimes is explain to people why I am struggling. Like the day I couldn't go see my sister, because the stress and anxiety got the better of me and by the end of it I knew I wasn't able. At first, I wanted to go anyway and push through the debility. But then I realized that was not too unlike a drunk driver not wanting to pay $10 for a cab: Selfish. If I really explained WHY to her, then I was giving too much power to this "illness".

The dropping phrases and words is the worst. I want to explain to anyone who hears it that I have lesions on my brain. That's why I sound stupid. Not my fault. I am broken.

cue the violins

I don't want the pity, I just want people to know it's not me. Except it is. But it's not my fault, it's the disease. I think. Maybe. What? I forgot what I was going to say.

And then I don't appear ill, just crazy.

a

silver lining

2011-01-04T08:32:00.000-07:00

photo source

on my other blog, I was lamenting our church congregation's change to now meeting at 1 pm until 4 pm. It stinks for my 1-year-old son and his naps, which means it stinks for all of us.

Except

most of last year I kinda wanted to call it quits on Sunday as far as my symptoms were concerned. Day of rest? HA! Day of shaking and dropping and numbness.

Yesterday (Sunday), [this is me knocking on wood as I write this] I didn't feel too shabby. I'd say for a Sunday I was a B+. Maybe even an A- (for a Sunday). I got a little of the hand numbness, but otherwise: HOORAY!

I know Sundays are Stressdays and you know, I've learned a little about how I react to stress. (this is where I try not to say words like LAME and BOO and POOR ME, because in the scheme of things, it's all good.)

So, for my son, Sundays are now crummy. And for me, Sundays are now quite nice. If one day is any indicator, which I like to believe it is.

a

steee-ress three, you're out

2010-12-30T10:19:00.000-07:00

At my last neuro appointment I was explaining how it seems like I feel weakness and debility after a bout of anxiety or stress. In full disclosure, I was hoping that this would veer them toward something OTHER than Multiple Sclerosis. After all, I had never heard nor read anything about stress causing relapses in those with MS.

The longer I explained, the more I felt myself trying too hard to convince the professionals. I was then calmly told that this is very normal for patients with MS. Huh? Since when?

It's not like stress doesn't happen. My son busted his chin the other week and we had to run him in to get stitches. Imagine me, my 1yo baby who doesn't walk and my 4yo son who refuses to walk because his chin is bleeding like mad. And then picture snow all over my car and no window scraper in sight. And then me running up a hill with both boys in my arms into the Urgent Care. What stress?

Amazingly, the weakness didn't kick in until after we were in the "surgery" room and the 4yo was numbed. I didn't even really feel weak until hours later when I had a chance to really rest. So, it hits hardest on the letdown, some of the time.

Other times I can just feel the stress of simple tasks compounding and then I can't do anything. Some of the time.

I either need to learn some major breathing relaxation techniques, do more yoga, or give in.

a

curmudgeonly

2010-12-12T13:36:00.003-07:00

photo source

Today I am curmudgeonly. I am frustrated and moody.

That being said...

I have a friend whom I have yet to meet. I have never heard her voice. But she has taught me a lot about how to deal with Multiple Sclerosis with grace.

A couple of weeks ago I had another neurologist appointment and I wrote about it here. Her comment on it made me want to cry a little.

"I already think whatever you think... that way no matter what...
you have the support you need."

She knows a little something about diagnosis and disease. And she knows how she would want to be (or have been) treated. It is an emotional relief to have someone that supports you no matter how you feel; someone who doesn't try to convince you of something else or ignore that there is an issue.

One of the most hurtful (and usually unintentionally so) things that people have said to me is that whatever I am feeling is "normal" or that they "have the same things happen all of the time." I know they hope that I don't have this disease and want to show me that degeneration of the brain is totally normal.

Except I know how it feels to lose a word on occasion. That has happened to me more frequently with the birth of every child. But that is not what I have come to experience lately. I don't forget what word I was going to say. It's like my mind is a chalkboard and I am reading an easy sentence that has been written upon it. Suddenly an eraser blots out the words I was going to say next and as I scramble to remember what it is I was reading, it then erases everything that I have already read. I am left completely befuddled. And embarrassed. And then somebody tells me that it is totally normal and it happens to them and now I also feel stupid and like that person thinks I am a fraud. A fraud who is pretending to drop spoons, forget words, stumble down the stairs, lose control of their arms, and replace words. I am making all of this up... for what? For attention? For fun? Because now I can be lazy and sad and write about it for kicks?

I know this is never the intention of those who make such comments. I know they say things like that out of love and concern. I know people don't want me to have a disease.

Guess what? I don't want a lifelong disease either. But the chances are very high that I do have Multiple Sclerosis or at least something like it. I may joke that someday it will work in my favor so that I can have better parking spaces, but trust me when I say that I would much rather clean my floors and take my own laundry basket down the stairs.

To have support no matter what. To be told that someone thinks whatever I think regardless. When I am scared and weak, I don't want to be told that I am tough and brave. I want someone to tell me that it is scary and what I am feeling is real and that I am supported.

This is what I need. This is what I would hope I can give to others who need my support.

Thank you from the bottom of my heart, Karen.

a

I'm fine

2010-12-07T09:03:00.000-07:00

Really, I'm fine. Thanks for asking.

Nothing new, nothing scary, nothing crazy.

I'm learning to live at 85% and it's not so bad anymore.

(Didn't you hear? 85 is the new 100)

I'd love to get a burst of ability so I could vacuum and mop this house.

On second thought, it's great to have a valid excuse.

I'm doing well. Really.

a

official

2010-11-30T15:51:00.000-07:00

photo

Yesterday was my neurologist appointment. Alan thinks we need to distance the appointments so that they do not coincide with Christmastime anymore.

I don't even really remember last Christmas. It was all a blur with a new baby, a post-baby body, a drooping face, and the multiple diagnos possibilities concerning my health. December was filled with tests, doctors, birthdays, tears, celebrations and fears. I don't recall much about the birthdays and celebrations, unfortunately.

Yesterday was a typical neuro appointment. Blood tests ordered, other possible tests discussed. List your symptoms, list the severity, list your concerns.

Guess what I found out?

Signs point to the possibility that I have Multiple Sclerosis.

Shocker.

I told the nurse practitioner that I am no longer afraid of official diagnosis. And I am no longer in a hurry to get to it, either.

She is in more of a hurry than I am. She wants me in for more tests and hopefully a sign that we can start therapy.

I just hope I don't get anything official before Christmas.

You know, for Alan's sake.

a

sugar, sweetie

2010-11-22T10:05:00.000-07:00

Lately I've read some horrible claims that sugar is bad for you. Not just "rot your teeth" bad, but EVIL!

Recent studies (here, here, here) tell us that sugar not only makes you fat and happy, it makes you sick and susceptible to additional disease. Sucrose makes it difficult for your body to absorb vitamins and minerals and suppresses your immune function.

Pass the Red Vines, please.

Oh, and IF you have an autoimmune disease, it exacerbates your symptoms and causes inflammation.

Happy Holidays, right?!

Of course, we can always throw out the old "all things in moderation" claim and feel OK about that piece of pumpkin pie with whipped cream, but who are we kidding. When someone tells us to be moderate about sugar, we don't only wait for the actual holiday. We (and of course, I mean I) eat something sweet every single day. Because I need it. And I am not including the fact that all white and processed flours turn into sucrose during digestion.

I know that I need to stop focusing so much on my meat and dairy intake--those are pretty under control. Now I need to face the music and stop indulging my two-faced, snarky friend SUGAR. She's my oldest, sweetest friend. She might just be killing me.

a

when I'm old

2010-11-10T14:42:00.002-07:00

photo

I am a pretty opinionated person. I think I've gotten better with age. At least, I hope so.

Long ago, I had an idea for a book I was going to write: Things I Hope I Remember. It was going to include things I felt as a teenager, a college student, a newlywed, a young mother, etc. The idea was that as I aged, I could look back and remember how it felt at that age--that although forgetting had come and time had passed, the reminder of how it felt would be written and recalled.

I'm not saying it was a bad idea. I still like it for my own personal use. Except.

Except, it hurts. The recall of what I had anticipated as my future hurts a bit.

I had it all figured out. My future, my abilities, my mind.

When I have grand kids, they will spend the night at my house and I will always have cookies in the cookie jar just for them. I will take them out on one-on-one dates and clap my hands with joy when they come to visit.

I have one daughter and THREE sons. Hopefully, then, I will have one son-in-law and THREE daughters-in-law. Heaven help me that my sons all marry girls who are patient. Please don't let them complain that their mother-in-law isn't a very good grandmother and that she could get out of that wheelchair... if she really wanted to. Let them trust me with their kids and let my hands work so I can be trusted. If I can't make them cookies for my cookie jar, let me have the means to buy them and have that jar STOCKED. I want to still be able to clap my hands, pinch their cheeks, kiss their faces, and hold their sweet little baby bodies.

I judged too harshly. I decreed my future too quickly, too naively. I decided how different I was before I knew how unable I could be.

If we get a female dog, I will name her Karma.

And I will spend the rest of my time enjoying the now. (link to great article) (thanks jenny)

a

november

2010-11-05T17:39:00.000-06:00

photo

This month I'm trying to focus LESS on me and more on OTHERS. I know people who seem to do this naturally and with so much ease. Sometimes I get so caught up in "what the heck is wrong with my body" and "I just want to make meals for my family and keep the house clean" that I forget THE BIG PICTURE. You know, the whole "do unto others as you would have them do unto you." OR "If you love me, feed my sheep." OR "Love thy neighbor as thyself."

Wait, so this whole world DOESN'T revolve around me and my impending diagnosis? weird.

I've felt quasi-crummy lately. Not horrible, not fantastic. Just kind of at the brink of debility. Not there yet, but I feel it looming. And sometimes I want to crawl into bed, grab a book, and forget that I am part of a community, a neighborhood, a world. Just me and the five others that walk in and out of this home's doors.

I don't think that's why I am on this Earth. Sometimes I need a good look in the mirror and a big "Hey, Ahhnna, get over yourself."

Because guess what? I am not the first person to potentially have MS. Or any disease for that matter. And I won't be the last. There will be other things that inevitably "go wrong" in my family and I've still got to live. I still have to make it the best life possible, filled with as much joy and peace as I can find.

That's my goal this November. I'm blogging about it daily on my other blog.

MS or No, this November is gonna be swell!

a

a jar ajar

2010-10-26T21:04:00.000-06:00

photo source

I know it sounds like all I do is complain on this blog, but DUDE, this is my POTENTIAL MS BLOG. That's kind of what it is for. To document the bad, the struggle, the hope, the journey.

So, yes. This is another complaint.

I HATE OPENING JARS!

Mostly because it has become very difficult. Like nearly impossible. Pathetically so. If and when I finally maneuver the lid off, my arms are gelatinous for hours. It spends all of the energy I needed for the day.

on a stupid jar. Even with the aid of a handy jar opener thingamajig.

It's a cruel reminder that even when I am feeling OK that I am not, in fact, OK.

boo!

a

tremble

2010-10-21T13:21:00.000-06:00

So, vacuuming is like torture.

I've never been a fan. I like the look of those straight, just-vacuumed lines in carpet. Yes, that is fantastic. But I don't have any carpet that would make those lines. And most of our floors are made of WOOD, anyway. And I hate the sound and the way my kids think it is a hilarious game of dodge the monster (while they SCREAM).

Apparently vacuuming makes me tremble. Not out of fear, but literally causes my arms to tremble for hours afterward. Not always, but often.

Same goes for sawing. I like to saw. I pretend to be a carpenter on occasion. I've made a table, a bench, a chair (that broke), some shelves, wood art, and scarecrows. I'd take sawing over vacuuming any day. Unfortunately, it also gives me the trembling.

So does
hammering
sanding (oh boy, this one is the worst)
mowing (I am assuming)
shoveling
raking
hula-hoing

It seems like a ticket to lethargy... which might be nice if it didn't suck so badly.

I can give vacuuming to one of the kids for their chores. And my husband is a great lawn mower. But I'd like to be able to do these things if it ever tickles my fancy to do so. The ability is half the honor.

a

weakness

2010-10-14T09:58:00.000-06:00

Flee an enemy who knows your weakness.
~Pierre Corneille

Last weekend it started again. What do people call it? Relapse? Setback? Exacerbation? I can never remember the lingo. I blame it on the white spots on my brain.

It got worse on Sunday. Always on Sundays. I could try to explain why, but I don't want to think about it.

When it gets bad, I turn into on the defensive and cower into my little shell. I am not a good actor. I can't hide my physical pain with extra energy and a "HEY THERE!" attitude. Not my style, apparently. So, I become reserved and abrasive. Not exactly two qualities that I esteem. It's like insult and injury.

I don't want to talk about how crappy I feel when I am feeling crappy. I don't want to tell people that I am embarrassed that I cannot form complete, coherent sentences without slurring and dropping complete phrases. I don't want to admit that I shouldn't pick up that box/bowl /child/chair because it will only make me weaker and there is a good chance I will drop it. I don't want to admit that I shouldn't be cutting that carrot, or stirring that whatever is in the bowl, or shucking the corn. I SHOULD be able to do it, so I don't want to talk about why it is so difficult.

I turn off. I am sure everyone thinks I am a hag. I don't doubt that I am one at those times.

By revealing your weaknesses, you find strength. Right? So why do I want to run and hide when I feel my weaknesses?

a

yeast

2010-10-06T09:51:00.000-06:00

Yesterday I was informed that yeast can be a major factor in Multiple Sclerosis flare-ups.

Forgive me for being crude, but when someone talks about yeast and health, I don't think bread or beer. I think VAGISIL. and MONISTAT.

Not something that I want to talk about with... well, anyone. Ever.

On further discovery, I read (again) all about leaky gut. Leaky gut. Is that the most descriptively disgusting title of a body issue in the world? At least yeast infections (the ones that I DON'T want to talk about) are really called Candidiasis. But leaky gut is not a description of a syndrome. It is a syndrome. Leaky gut. Maybe if I type it out more, it will sound less abrasive. Leaky gut.

I am all for eating right to help my symptoms, but alleviating Leaky Gut Syndrome is so restrictive I cannot imagine maintaining the suggested diet.

DO NOT EAT:

SUGAR (fructose, honey, molasses, and simple carbohydrate/snack foods such as potatoes, chips, cakes, cookies, desserts, sodas, fruit-juice and ice-cream)
WHITE STARCH (white bread, cakes, pasta , white rice, potatoes, and all refined flours)
FERMENTED PRODUCTS *hence YEAST (bread, alcohol, soy sauce, and vinegar)
FUNGUS Mushrooms and cheese
FRUIT Avoid fruit, fresh, dried, and fruit juices
ACIDS citrus
DAIRY
CAFFEINE (including chocolate)
CARBONATION
GLUTEN

And stay away from most beauty and personal care products.

Leaky gut. Man alive.

a

for good measure

2010-09-30T11:11:00.000-06:00

I had to write something... I was getting mighty sick of that last picture.

I want to start running again. Riding my stationary bike isn't cutting it, especially owing to my very bruised tailbone. Yoga is great, but finding an hour to "clear my mind of all other thoughts" and balance--without a monkey jumping on me--is proving difficult.

I've been feeling pretty great. A bit of shakiness, but not much. A smidgen of right-side weakness, but nothing too debilitating. Perhaps a hint of blurriness in my right eye, but I'm chalking that one up to something other than MS. Old age, anyone?

I want to start running. That would mean I need to charge my phone every night so I could have it ready to go in the morning. Oh, and I would need to wake up earlier. Like before 7 am. YIKES! I can do it, though. Which would also mean that I need to go to bed earlier. And I would REALLY need a new iPod Nano, since the iPod Touch is ridiculous to run with. Anyone want to help me out on that last one?

I hoped to at least try running by the time leaves were falling to the ground, and as fate would have it, I think I am. I think tomorrow is my day.

a

so far so good

2010-09-22T08:52:00.000-06:00

This last week has been "normal", as in how I used to feel before this journey.

Admittedly, I was beginning to think that the normal feelings might never return and the constant numbness, stuttering, lethargy would be my new normal.

I'm not discounting that it will return, but it's nice to not feel the "new normal". It's very exhilarating to feel the "old normal".

I even took a whirlwind trip to NYC and filled my two days to the brim with activities and walking and more walking and little sleep. I felt great.

Knock on wood, eh?

a

hopscotch

2010-09-09T10:32:00.000-06:00

Two days ago I was playing hopscotch with my two boys out on our driveway. I was showing off. What's new?

When I had to jump on only my right foot it buckled a bit and then I felt it lag.

Just for reference, really.

So, note to self: feeling pretty great... mostly. Right leg doesn't like to be alone. It definitely feels weaker, like when I did yoga this morning. Right arm is a bit shakier than the left, as well.

a

to run and not be bitter

2010-09-04T12:58:00.001-06:00

I'm getting quasi-bitter.

I don't like this feeling at all.

But it makes me mad to think about how I used to live my life--always thinking things were too hard or unattainable. How I would have to train for years to be able to run a marathon. I thought that having a "perfect" body in appearance would make me happier and run faster. I yearned for smaller pants, smaller bras, longer hair, more toned arms, etc.

The longest race I ever ran was 10 miles. It was supposed to be a precursor for a half marathon which would then lead to my inevitable marathon. And then I got pregnant. And then... ! And now I have been strongly advised against running for a while.

I get it. I understand why I shouldn't run. Especially if I am running alone. Sometimes I go for walks and I can notice my instability and wobbling.

But I am completely jealous of the people that run past me at all times of day and night. I'm like an old geyser sitting on the front porch, yelling out to the children walking by: "Enjoy your youth--it's wasted on the young. What I wouldn't give... !"

What I wouldn't give to go for a long run all by myself. Ahh! Hit the pavement and keep running until my legs feel all weak (in the good way) and then turn around and make them work twice as hard on the way back.

I'm quasi-bitter because I see people who can do it and don't. Because I hear people complain about how they only ran 40 miles that week and not 55 as planned. Because I didn't work harder when I could have. Because I AM FEELING BETTER and I'm worried that it won't stay this way.

I don't like feeling this at all.

But, I am feeling better. Maybe I'll race you in Boston in two years, after all.

a

MS everywhere

2010-09-01T10:45:00.000-06:00

I got an email OUT OF THE BLUE from an old, dear friend from high school.

After a few messages back and forth she tells me that she found this blog and that BOTH of her parents had/have Multiple Sclerosis. Both. Her mother has had it for over 30 years and her father passed away one year after diagnosis.

My heart sunk.

Why didn't I know this? How could I not have known at least about her father passing away?
I can't get over the idea that both of her parents had the same disease. Isn't there a rule somewhere that says only one spouse can have a certain disease? No sharing when it comes to diseases.
This is such a sadly perfect example of why MS is so uncertain. No two cases are the same. Nobody with MS progresses/reacts/regresses the same as another.
Selfishly, I also wondered which one I would be more like: slow or aggressive?
It has become more apparent to me that we don't realize what everyone is going or has gone through until we go through something similar. I had very vague ideas about what MS was or even who had it until about 9 months ago. Suddenly, it's everywhere. It was obviously everywhere before, I just didn't see it.

Dear friend, if you read this, I am sorry I didn't know. I hope your mother continues to find joy and happiness in her life. I hope you are well and I am so glad to be in touch once again.

a

august blows

2010-08-24T22:06:00.002-06:00

August is the month of too much. Gluttony at its finest.

August is:

our wedding anniversary
Alan's birthday
my birthday
(as well as my mother's birthday, Al's father's birthday, my sister's birthday, as well as a few birthdays of some nieces and nephews)
oh, and school starts

My diet goes out the window mid-August and doesn't return until first of September.

Usually September also finds me with extra pounds! HAPPY BIRTHDAY! I got myself some new tubs o' lard to stylishly wear around the tops of my jeans. HOORAY for the muffin top!

Here's the mystery. So far, I've felt pretty fantastic. Heavier? Sure! Gassier? You bet!

Shaky hands and stuttering? Actually, not so much. Hardly at all, really.

I've eaten more bread in the last two weeks than I have in about four months. I've eaten more sugar than I should have eaten in a year. I'm weak. It's a problem.

I feel pretty great. Which makes me wonder...

Coincidence, circumstance, or a birthday present from the fates of the potential MS?

(still not eating meat, though. I know you were wondering)

a

definitive

2010-08-18T15:52:00.001-06:00

Last week I was talking to my mother-in-law. I don't know if she was being polite in not assuming or if she was being real.

It started when she asked me about my diet.

I told her that nothing was really working on alleviating any symptoms (I lack patience). I had been considering eating whole wheat again and seeing how my body reacted. I mentioned that other people who had diagnosis decades ago had success with no gluten, but I wasn't sure if it felt right to me.

Like I always do, I was just talking. Carrying on and on and on. Then she asked me:

Symptoms of what? What diagnosis?

I felt stupid. I felt guilty. I felt... awkward. Didn't everyone in my family and closest friends know that I've been on a journey to Multiple Sclerosis diagnosis? Wasn't everyone informed about the appointment where I was told that it's not definitive but I "most likely have MS"? Hadn't I told all of our family that I had that calm feeling when I pondered the possibility?

Should I not be so open about it because there is not a definitive diagnosis? Does that make people uncomfortable talking about something that isn't conclusive? Is that why, in my journey to diagnosis, I haven't found anyone else that has been open during this period of confusion and answer-less-ness?

I might have Multiple Sclerosis!

I have not been given the card. I haven't joined the club yet. Does that make my symptoms, questions and concerns less significant?

a

to try or not to try

2010-08-11T13:33:00.001-06:00

I used to play the violin.

I used to run and train for races.

I used to have clean bathrooms.

Since my hands have been less than compliant to my every desire for them, I have considered referring to myself as a non-violinist. Much to my mother's chagrin, I have not practiced very much since leaving her home. All of her driving me to lessons, paying for said lessons, ~~nagging~~ ~~pleading~~ suggesting that I practice, nudging me into orchestra, watching me walk around the house while fiddling, enduring the first few years of screeching, et cetera.

I am afraid that if I tried to play my gorgeous violin again that I would get frustrated and saddened at what I cannot do, that it will disrupt any future desire to pick it up and play. I don't want to be a non-violinist, but it might be better than a deteriorating incapable violinist.

I envy runners. I sit out on my front porch and watch hundreds of people run/jog/walk/scurry/bike past my street daily. The weather is ideal, the location is prime. The running shoes collect dust because I am not sure if I should be outside running alone. My neurologist suggests stationary indoor exercise equipment and sitting in the sun for 15 minutes daily. My abilities can be questionable and unreliable.

Sometimes I just want to put on my shoes and take off. End up wherever I choose and then make my way back slowly, letting all of my thoughts unravel while I solve the world's problems. Someday. Hopefully soon. I'd love to be able to run in the crunchy autumn leaves. But whenever.

And, yes, I used to have clean bathrooms.

Now I'm happy with decent bathrooms. Oh magical cleaning lady fairy, where are you?

I used to,
now I want to,
some things I've got to,
before I am unable to.

a

What do you say?

2010-08-02T23:08:00.000-06:00

What do you say when someone asks how you are? I mean, more than the friendly "how are you" whose intention is as meaningful as a "hey!" (Which reminds me, why do people say "how you doin'" as they walk PAST you on the street? Or on your voice mail? Baffling.)

Right, I was saying... when someone asks you meaningfully "how are you" what is the correct response? Honesty? A small percentage of that honesty? Grin and bear it and LIE?

Heaven knows I don't want to be THAT PERSON who is always telling her ailments and sob story.

YOU: Hey, Ahhnna, how are you?

ME: Oh, my arms have been weaker than normal today. I didn't get a lot of sleep so I am feeling like my feet are dragging through the mud. And for some reason, the twitching in my eye won't stop and I swear it is causing this headache behind my eyes that might be a bona fide migraine. If that wasn't bad enough, I am so stressed about school starting for the kids that my anxiety is creeping up and giving me major gas.

YOU: Oh, great. Sheesh, would you look at the time? I didn't realize... I forgot that I... see ya later!

But if you answer with an enthusiastic "great" and it's the lyingest lie you've ever told, then maybe when you collapse in a heap of worthless movement, they will have no idea what to tell the paramedics when they arrive.

YOU: She was totally fine. No symptoms at all!

So, maybe you play mysterious and say something like "I've been better" or "trying to make it a better day than yesterday" or "who knows?"

Who knows? That's my line from now on. It's all I've got.

But, seriously, thanks for asking.

a

like a paper cut

2010-07-22T12:11:00.000-06:00

It happens every once in a while. I get a call and a concerned "how are you".

Fine, thanks. How are you?

No, how ARE you?

Fine. Why?

You know, how are you FEELING?

Oh. Right. Fine.

I deal with my symptoms everyday. Some days are worse than others. Some days go by and I feel normal and finish everything on my "to accomplish" list. Other days I start similarly and then KA-POW, my body starts malfunctioning. It may be that I run into a table, drop a glass, knock over a whatever-it-is-that-I-didn't-even-realize-was-in-my-way. And then my arms start to feel feeble, then weak, then numbed. Maybe my feet drag. Perhaps I start to stutter and slur. That's when I decide we will have cold cereal for dinner and nobody really needs to shower. MOVIE NIGHT!

You know when you get a paper cut on your index finger and for the next three--five days it always seems to hurt? You never realized how much you rely on using your index finger and now suddenly it is impaired.

Oh, index finger, I will never take you for granted again!

These symptoms have become such a part of my life that I mostly don't think about them. Mostly. If it gets really bad, then I completely think about it. But otherwise, I'm fine. I've learned to operate my finger with the paper cut that doesn't seem to fully heal. Really, thanks for asking.

a

broken

2010-07-14T09:12:00.000-06:00

Sometimes I feel like everyone around me is going out for a jog, competing in some race or other, eating French bread with abandon, traveling the world. And it makes me feel broken. And the pity party begins.

I don't let it last long, luckily. Because I DO realize that everyone has something broken... something that makes them not completely perfect. It may be invisible to everyone else, or easily hidden. But we all have some issue (or multiple) on this life's journey to mold us and teach us. Some people's burdens seem too heavy and I can't imagine having a small part of their issues. Then I feel lucky.

What is that saying? If we had the choice, we wouldn't choose anyone's problems over our own. Something like that.

I'm not broken, I'm unique.

a

navel gazing

2010-06-28T15:36:00.003-06:00

When I first started getting tested, I had a week-old baby, and three other children (3, 5, 8) all anticipating winter break, a birthday, and Christmas. I was trying to keep it together, trying to laugh away the facial paralysis and trying not to let my kids see me cry.

I was kinda freaking out.

The list of possible problems that the doctor shared were:

stroke
brain tumor
hole in the heart
MS
herpes

I'll take the herpes, please. Words I never thought I would say. Being the careful doctors that they were, they needed to rush me into testing for the first two because they were considered life threatening.

And so I prayed longer, hugged my kids tighter, cried on their heads more (albeit discreetly), made up more bedtime stories, and pleaded with God to let me hang around with these four children longer.

I remember watching my newborn sleeping on the white shag rug and losing it. I couldn't leave this kid before I got to know him.

Each test gave me one more check off the list.

NO stroke
NO brain tumor

BUT bubbles in the heart chambers
AND white spots (lesions) on the brain, so
NO herpes

That left PFO or MS

My doctor was hopeful that it was a PFO; a hole in the heart sounds scary, but it is "EASY" to fix. A little umbrella-thingy and a little surgery and you're all better. So, I prayed for a hole in my heart. More tests followed and the cardiologist apologized that there was no hole in my heart. Apparently, the bubbles showed up because of my gender, my hormones, and the fact that I had just had a baby.

good times

So, MS was my only option from the original list. Here is where I still am. Yes MS... most likely... we'll let you know.

Now my newborn thinks he can scoot around the house. He gets up on his hind legs and arms and propels himself forward. He's getting too big too fast. And I get to see it. Thing is, there is no rush to know if I have MS or not. It might take two years for diagnosis, but just six months ago I wasn't sure if I had two years. In two years, my baby will be walking, talking and begging me for popsicles. My daughter will be 10 and begging for lip gloss and the new iPod. And I have a really good chance of being here.

I feel a little luckier to have whatever time I have. Sure, my arms are all crazy sometimes and I might slur my words. I might not be able to do all of the projects I want, but guess what?! I can still do projects. I can hug my kids every night and tell them as many stories as I can think of on the spot. I can plan a trip with my husband for the fall and even for the following fall.

Not everyone is as lucky as I am. I try to remember that and the feelings that I had when I wasn't so sure. Carpe diem, my friends.

a

blog about it

2010-06-21T13:03:00.001-06:00

It seems like there are a few types of blogs:
1. ones that make you want MORE
2. ones that make you feel WORSE/NOT GOOD ENOUGH
3. ones that make you feel BETTER ABOUT YOURSELF
4. ones that make you SAD
5. ones that INFORM

Feel free to add any types of blogs that I have left out. These are my 5. The ones that make me laugh fit into #3. The ones about people going on vacations and their decorated-to-the-nines parties fit into #2. The blogs about design, decorating, cooking, crafting fit into #1 (and occasionally #2). Then there are those blogs about people dealing with death, injury, illness {ahem}, loss, etc.: Hello #4! Some of the above can be a #5, #2 AND a #1.

The more I look over the list, I wonder WHY IN THE WORLD do I look at blogs? For real. I can be crying one second, laughing the next, and then feeling like if I don't get a new chair for my front room I just might die. Seriously, what in the?

Then there is the fact that I write THREE BLOGS all by myself. Three! I'm a contributor to this overwhelming blogland, that's for sure. Why am I writing this blog? Is it for me? Is it for those who will follow in the two-year question that is MS diagnosis?

Here is what I do know: Writing is cathartic for me. Writing keeps my skills honed and at the ready. And writing is a way to share with others a journey that I would normally be tight-lipped about.

This MS crud is bizarre. It is confusing and frustrating. I could fill a jar full of people who know people who have MS. But to actually talk to or read about someone dealing with MS is entirely different. Sometimes it makes me worry for my future and other times it gives me incredible hope. Either way, it beats sitting in a dark corner wondering how I should even start finding my way to the door. It's more like standing up, feeling the walls, and listening for the voices leading me toward the opening.

a

faith to heal

2010-06-17T10:18:00.000-06:00

photo source

Let me start by saying that I am a religious person. I pray, I fast, I read holy scripture, I try to be a good person, I go to church every week.

I've been thinking a lot lately about what role faith plays in staring down disease. I wrote on my other blog about how I view and feel about my body.

But what do I think about having adequate faith to be healed? Do I believe that faith CAN heal?

Simply, yes.

But it is more complicated than that for me.

For the past 6 months, anytime someone hears that I might have MS, they decide it is the perfect opportunity to tell me that they also were tested for MS, had an MRI, prayed really hard and miraculously the brain scans came back and no MS.

“That’s great,” is about all I can muster. I know they think that they are being empathetic, but all it really screams is: Pray harder! Where is your faith? OR I don’t have it, so you don’t have MS!

Like I said, I am a religious, God-fearing person. I am a believer, whole-hearted. But I don’t think that means I should float through life without hardship. And I don’t think disease means you aren’t a good person.

I often remind myself that there are WAY BETTER people who have WAY WORSE problems. And then I say “that’s great” to all of those who would have me think that all I need is more faith.

Faith to me is perspective. And hope for the next life.

Faith can heal. It can even heal me. But faith can also give me the perspective I need to realize that I might not ever be healed and that it is OK. Faith tells me that this is my life's journey, that I can overcome adversity and have a happy life. Faith to me is knowing that regardless of how hard my life may seem, that there is a God who loves me. And that my life is actually really easy.

What is faith to you?

a

Die-it or LIVE IT?

2010-06-15T04:17:00.000-06:00

I saw a late-night infomercial that wasn't touting a DIET, but a LIVE IT! I laughed for a good five minutes; it was so ridiculous and clever and unintentionally funny. I know someone out there is patting themselves on the back for coming up with that one.

And the whole "this isn't a diet, it's a lifestyle change" has gotten on my nerves, if I can be Frank. Shirley, you understand. A diet is simply the kind of food one habitually eats. So YES, regardless of what you consume, you are on a diet. Get over the word DIET, friends!

{ahem}

Back to our regularly scheduled topic: My diet for my potential MS. I decided about a month or less into this journey that I was going to control what I could control. And I knew my diet was something that I could control. If it would help my symptoms, I didn't and still don't know. I began by eating NO MEAT and NO DAIRY. And mostly NO SUGAR. I felt better. But then after about 45 days, I started feeling crummy again. So, I ate a lot of sugar. Then I felt worse.

My friend and neighbor has been diagnosed with Multiple Sclerosis for over 20 years. He told me that gluten and sugar are his biggest trigger-offenders. NOOOO!! French bread, french toast, tortillas, pancakes, pasta, oatmeal cookies, oatmeal, croissants, bagels, and so on and so on. I could manage no meat, no dairy and even no sugar. But NO GLUTEN was like asking me to take off two fingers and type just as fast.

My body, my decisions, what I can control. No more gluten was completely possible.

I read this story from Roger MacDougall (HERE). I felt more empowered and slightly less sorry for myself.

I found these websites:
http://www.simplysugarandglutenfree.com/
http://www.elanaspantry.com/
http://glutenfreegoddess.blogspot.com/

Haven't made many of the recipes, but it's nice to know that they are there. I added fish into my diet, sparingly. And now I am in a quasi-holding pattern. I think I ought to give it a couple of months (AT LEAST) before I make any assessments. Biggest thing for me right now is NO GLUTEN, NO RED MEAT, NO SUGAR. I'm still refraining from dairy and most meats, but I've got to be slightly flexible.

So, what do you do? Have you found one diet to be more helpful than another? Do you have a particular diet to control your symptoms? Help a girl out! ;)

I am so tired... of being so cool

2010-06-14T15:47:00.001-06:00

photo source

No, really, I am just so tired. I am so tired that I don't even pronounce "tired" like I ought to; it comes out more like "tard". I am so tard, it's not even funny. If I lie down for 10 seconds, I am sleeping. If the room is dark and I have nowhere to go, then I am out in 4.5 seconds.

I should take my vitamin B-12 shot, which allegedly will give me more energy. I should... but those needles are huge and the last time I self-administered my shot, I had major "flare-ups" for over a week. I realize the chance that the vitamin caused my flare-ups is next to nil. I don't remember feeling more energy, either. Just worse. So, I've put off giving myself another shot.

But really, I am just too tard to think about it. How long of a nap can I fit in before the baby wakes up or the kids start fighting?

Ready, set...!

a

Hey There!

2010-06-12T11:09:00.000-06:00

photo source

I've debated over and over again whether or not I should write this blog. On one hand, HELLO private matters. And I don't want to be crying wolf before I know for sure if I have this disease. On the other hand, this is a long process. I'm sure there are others out there like me that feel stuck between normalcy and carrying on after being diagnosed. It's like being trapped in a cramped box, not knowing where you are going to be shipped, but you know that once you arrive you can get out, stretch, and assess. Until then, enjoy your cramped, confusing, dark box! Sorry if you're uncomfortable!

These past six months feel like years. So, saying TWO YEARS until diagnosis is telling me that I will have to wait until my newborn is potty-trained and wearing underwear. Looking at my baby in his little diapers, that day seems SO FAR away.

What do I do in the meantime? How do I deal with these relapses? Do I tell anyone (um, that's a done question for me, now)? Do I try to help my symptoms with diet? Do I sleep more? What kind of exercise can/should I do? Am I making all of this up?

Am I making all of this up?

Do you ever feel like that? When you are feeling "normal", you wonder if all of your symptoms weren't as bad as you thought? Maybe you can move your arms more than you think you can. Maybe you are stumbling over your words because you think you might do it... so you do. Do my hands really feel this numb? Is this dizziness because I'm not drinking enough water or is it something I should write down and report to the neurologist?

This is my journey. These are my questions. This is me figuring it out. Welcome to the ride.

a