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Feb. 17th, 2008

sure to spin

it's been a while

It's been a while since I've written in here, for quite the variety of reasons. The easiest to explain, I suppose, is that as my symptoms began to get better last time around I felt less of a need to chronicle the experience. Of course, I should've, to better understand it...but the concern lessened as the symptoms lessened.

There were days when it was bad, but there were also days where it was greatly reduced. For quite a while now I've been able to function at work, barely noticing the rocking sensation at all. I won't say it disappeared, because it hadn't, but it was manageable and barely even noticeable during the day. In the evening it was moderate, more noticeable when I was particularly stressed or tired, but again, not to the point of a huge distraction. I could still read, write, grade, etc.

Well, of course since I'm writing in here again it's obvious that the symptoms have increased again. That, and another little development I'm oddly grateful for. I recognize how odd this illness is, and I recognize that there are plenty of people who don't believe in it at all. Including, I'm sure, friends who claim to understand or believe or care but secretly suspect I'm utterly mad. In fact, anyone reading this could be one of them. Now, I'm lucky, too. My family doesn't think I'm crazy, and my boyfriend never once doubted me and has even gone so far as to research it and suggest ways to help it. I know I'm not imagining this, or even if it is "all in my head" it's still profoundly real. I've met multiple doctors who know of it, and it's in quite few medical textbooks. But what sort of lead me to posting this was the fact that I actually met another individual with it the other day. Sure, I know people online but I've never gotten actively involved in the support group. Just reading it eases my mind. But the coincidence of running into someone who could recite my symptoms and experiences practically to a tee was....surprising and sadly pleasant in a shitty way. I met her at a wedding party I was attending last week, I heard her discussing how horrible vertigo is to another person at the party and i interjected. When they inquired into what i had, I launched into the typical, "Well, it's a rare form...called mal de embarkment." And she knew it. Because she just got diagnosed with it two months prior after a 7 day cruise (I imagine it was rather discouraging for her to find I've had it nearly 2 years). Now, I could tell her boyfriend thought her to be delusional and insane, so it was sort of helpful for her to hear from a fellow sufferer, I think, just as it was nice for me to be reminded of it too.

As for the current increase in symptoms, I have my ideas as to the reasoning but I won't know for sure. Oddly, I never discussed it in here last year, but I think it was around this time last year - when the symptoms were again at their worst - that I was in the process of switching birth control pills. Which is what's happening currently too. The pill I was on had stopped working, I was getting my period twice a month again (and I just got it again, only 2 weeks since i last stopped the pill). So, starting today I'm starting a new pill. Now, unfortunately, on top of this all I had a pretty nasty asthma attack/cold (?) last week. Or, I suppose what the doctor suspects, an asthma attack that turned bronchial due to the sugar cane fires in Palm Beach County. So starting today I'm also on a second steroid pack, antibiotics, and codeine. When I blew my nose earlier (I wasn't even stuffy, really!) my right ear popped some and the room spun so much my mom had to help me sit down.

I realize this entry is probably rather rambling, as I have taken the codeine not too long ago and am waiting on it to kick in before going to sleep. So, I'm sorry if it doesn't make sense, I'll fix it up when I feel better. Maybe.

I'm hesitant to post this publicly, I think watching the way this woman's boyfriend completely doubted her made me realize I very well may have doubters out there. For the average Joe, I suppose I don't care, but to think it could be anyone to means something to me as it was for her makes me hesitant to discuss it. But on the other side of the coin, I know how I feel, and ultimately this journal is for me, so what do I care what others think? It's been so long since i've posted here it's doubtful anyone will even notice.

Feb. 6th, 2007

sure to spin

Quite a mixed bag..

Yesterday was...a mixed bag. The severity of the MdDS wasn't as bad when I woke up, but I got ridiculously stressed in the morning and I noticed as I drove that my vision seemed blurred. I couldn't figure out whether to attribute it to stress, contacts, or what, but it remained that way for the entire day. At school the severity was worse, as it always is - I think it's the florescent lighting, which is known to affect MdDS sufferers.

As for this morning, severity isn't as bad. Maybe a 2 to a 3, depending upon the moment. When I woke up it was more around a 1, and i'm looking at this very positively. For a few weeks there, when I woke up in the morning I'd still be rocking an excessive degree - this morning I barely noticed it. It will intensify, I'm certain of that, but I'm looking at it as an improvement and a step in the right direction.

And I gained a pound. Wee. And I haven't been too exhausted or sick to my stomach. It's minor, but an accomplishment.

Therapist agrees I should try acupunture next week if it's still bad. Also possibility is a motion sickness watch from Sharper Image.

Feb. 4th, 2007

sure to spin

On an upswing

Today has been a remarkably good day. No headaches, no extreme fatigue, even the MdDS symtoms have been minor - at roughly a 3 or 4 or so for most of the day. No floaters in front of the eyes and neck and back pain is minor. I took the full dosage of Fluoxetine today, too, and accomplished quite a bit of work. I do, for some reaosn, feel like something is stuck in my throat. It's felt that way for the past day or two, but it's a minor complaint considering everything else I typically face.

Here's praying this keeps up.

Today's Meds - Synthroid, Flonase, Fluoexetine, Celebrex, Singular.

It's hard to believe sometimes that I'm just twenty four.

Feb. 3rd, 2007

starry night

Hope springs eternal

Somehow, today has been remarkably okay.

I woke up with that headache...but it went away? Without any sort of assistance. The TMJ has been mildly noticable but nothing unbearable. I took the full dosage of fluoxetine again today and haven't actually felt too fatigued. I don't feel lively or alert - I haven't for a while. But I don't feel exhausted to the point of passing out - which is really a start, at least. Ultimately, the day got better and better as it went along. I'm almost afraid to go to sleep now, I want the good to remain and I'm afraid it'll be bad again tomorrow.

As for the MdDS symptoms - the severity has varied throughout the day, but it really has stayed around a 3 or a 4.

Other meds include the usual synthroid, the usual nasal spray, and in a few minutes the usual allergy med, Singular. Possibly a Celebrex before bed if the TMJ pain continues.

Pray this stays this way. Or gets better, even.

(no subject)

I came home from work on Thursday with one of the worst headaches I've had in months. Years, even. According to my boyfriend, I was mumbling and rambling on the phone as I drove home ("I always ramble! Moreso than usual?" I said. "True. Way more than usual," was his reply). As I pulled into the garage I was certain I was going to vomit and my vision was blurry. I barely managed to stumble into the house and onto the couch. A cold cloth on the head and twenty minutes later I managed to force myself up and was capable of reading fifteen pages of boring educational articles for a class I am taking. I also did some of my typical business work for my father, and then decided upon a hot bath.

Why a hot bath? Because my back and neck have been extremely tense and painful for the past few weeks and I was certain it was contributing to the neverending headache - and maybe even the nonstop intensity of the rocking sensation. Forty five minutes later, hot bath finished and a portion of a muscle relaxant consumed and there was no real improvement upon the pratically blinding headache. I finished my homework assignment - half assed - and settled down on the couch to watch TV for the next two hours, before going to bed around ten. When I woke up the next morning I felt fine. Neck and back still ached a little, but the headache was gone and I felt refreshed. The MdDS was par for the course - not at the worst it's been recently, but not as good as it had been a few weeks ago.

I scheduled a massage for the evening - I don't really want to spend the money on it, but my back and neck were still hurting so much. The massuse, who I've seen many times and who has never been one to use me for my money, was very adimant in my need to come back. She's always given me advice on how to feel better, etc, but she's never said it's impairative I come back for my health. So, I've scheduled another massage for next week. And I'm greatly considering acupunture as well. There are so many things that may be causing my MdDS - migraines, back/neck pain, nerve compression, etc - but more and more I've come to believe it is somehow neurological, even if my neurologist can't "see" anything. Pressure points and holistic medicine may be as helpful as a random assortment of drugs.

I came home yesterday after the massage and felt better, more relaxed and the "floaters" I often have in front of my right eye were entirely gone. I took my full dosage of Prozac (the doctor wants me to, and I didn't take it during the week because I literally could not teach on it, but it's the weekend so I figured I'd try to build it up in my system again) and slept from around 9:30 pm (when I passed out on the couch) to 11 am.

Woke up this morning with another headache. And the neck and back still hurt. It's a few hours later and the headache has diminished to dull roar, barely noticable, but the neck and back are still tight and painful. MdDS severity is at a 4 or a 5 and the fatigue is still somewhat noticable.

I've been exercising - 10 minutes a day on the eliptical trainer since last Saturday, with a break on Friday. As of today, I'm going to be upping it to 15 minutes a day. In consideration along with the acupunture may be yoga, as well, but I'm not sure I'm really capable of doing it on my own yet and so it would require finding a gym and classes that meet my schedule, which can be difficult factoring in the fatigue.

I also don't want to overload myself searching for a solution. As frantic and as desperate as it can get, I need to realize that i can only do one or two things at a time to try and solve this and maybe somewhere along the line i'll stumble upon the solution that is right for me. And until then, learn to accept it, as depressing as it may be.

Feb. 1st, 2007


(no subject)

I look like a clown. I am simply swimming in my clothes today. Everything I own that hugs my skinnier frame is dirty or designed for much warmer weather than what is currently gracing us, so I'm wearing clothes purchased at the beginning of last year, before I was saddled with this illness - when I was nearly fifteen to twenty pounds heavier. Back then, I was at my highest weight, likely due to a low thyroid. I haven't been able to figure out the weight loss - is it associated with the MdDS, the thyroid, what? Granted, I've always been stable around 117 to 120, but I haven't been at 117 for a while, a few months at least, and that was after a lot of weight loss over the summer as well. I guess I have to give in, go buy newer clothes. I kept assuming I'd gain the weight again - the weight I'm at is not natural on me (it's okay, it even looks good, but it's not natural, I know where I feel right and this isn't it) but it's been a while.

Morning MdDS Severity: 3 - 4
Morning Weight: 110 lbs

Today's Medications:
Synthroid - 88 mcg
Nasacort - 2 sprays
Fluoxetine - 10 mg

Jan. 31st, 2007


same shit, different day

As my morning post discussed, I woke up with a sore throat and a growing headache. I gargled with salt water and prepared myself for a day of feeling like shit. As a teacher, I've had more than enough days where I've pushed through a sore throat (brought on by a virus or over-talking, it doesn't matter, they both hurt) or a headache (allergies, noisy children, again, all the same) to teach. When I was first suffering from the MdDS, when it was at it's worst the first time around, I was also suffering from a sinus infection and a bout of emotional trauma to boot. I know how to push through it, it just doesn't make life particularly enjoyable.

And yet, the day was fairly good. The oddest part was the change in MdDS severity throughout the day. There were literally moments where it felt like it was entirely gone (and when I say moments, I mean moments when I was still, i.e. sitting or standing, not driving or walking - I typically feel fine during those moments, a classic sign of my condition) and I stood there, jaw hanging open, pondering why it was gone only to have it flash back as suddenly as it disappeared. This happened three or four times throughout the day and is highly unusual - in fact, I can only think of one time total in the past nine months that I've noticed completely diminished/very reduced symptoms.

The fatigue is lessened to a relatively normal amount, considering my immune system of general malese lately. The MdDS has always contributed some to my fatigue - I spend so much time trying to convince my body it's okay that it reeks a bit of havoc on my system. That, plus teaching, usually leaves me tired. But coworkers and family members all commented that I appeared more alert today and I found my motivation had returned - I created lists, planned things to do, and actually accomplished a lot (not enough, but a lot).

My weight, though, is down. At least, my morning weight. Weigh in was at 110, granted it's just a pound dropping, but it's not particularly wanted. I'm at the skinniest I can be without it entering dangerous territory. Nasuea was decent today, but would return periodically, but I at least managed to eat three complete meals and a snack.

There are a million theories on what causes MdDS - current theories involve some sort of compression of a nerve in the spinal/neck area, another theory involves it being a migrane variant. Others wonder about allergies or TMJ and thyroid has been considered. Quite simply, it's easy to pinpoint any of these things. I have them all. Allergies to dust, a deviated septum, all that jazz. I'm on a nasal spray, and an asthma/allergy medication. It holds it all at bay, but allergies still bug me from time to time. My thyroid has been a problem for nearly two years now - first, low thyroid, and then when the medication goes wonky, high thyroid. Currently it's supposedly alright, but who knows, as those tests are so complicated. I have TMJ, and if there is any good thing to come out of this illness it would be the fact that I've addressed my TMJ and gotten a mouth piece that has greatly alleviated the pain of the TMJ. Recently, though, my TMJ has been hurting more. And thus comes the question - which came first, the chicken or the egg? Did my TMJ flare up because I'm more stressed/exhausted from the MdDS, or did the TMJ cause the MdDS to worsen? And then the argument can be made for the nerve compression - the MdDS flared up again when I returned to work, at which time I also hurt my back. Did I shift something back onto a nerve somewhere? Or what about the migrane variant? I've had headaches recently, many more than I had in a while. Nearly blinding headaches. And again, chicken, or egg? Did the back cause the TMJ to flare up which resulted in more headaches and blah blah blah? Every theory can be acknowledged. I have no answer. I'm hoping that this journal points me to one in the future. I hope a pattern starts to show up.

And finally - MdDS Severity: 6

This morning's severity: 4
sure to spin

(no subject)

The last thing I need is to get sick. Last. Thing. And yet, it's what I believe is happening. I was sneezing all yesterday and this morning I've woken up with a sore throat that is all red and swollen and my head is starting to throb a little. I cannot get sick.

The rocking, though, is not quite as bad yet this morning. You win one, you lose one.

Jan. 30th, 2007


Day 2

This post will be edited later with more information.

Hours slept: 10:30pm to 6:00am (7 1/2 hours)
MdDS Morning Severity: 5-6

Today's Medications:
Nasacort - 2 sprays
Fluoxetine - 10 mg
Synthroid - 88 mcg
Singular - 10 mg

Morning Weight: (to monitor and make certain I don't go too low)
111 lbs

I cut the Fluoxetine down to 10 mg yesterday, against Doctor's orders, primarily because I simply did not feel I was capable of functioning (driving, teaching, etc) on the dosage I was on. I felt like a zombie. This morning is better, the fatigue is there, but manageable. Rocking continues, fairly intense for the morning (for the past few months it was barely noticeable, or roughly a 1 on the severity scale, particularly in the mornings, and would increase in intensity as the day went along which is typical of the illness). No vision problems as of yet. Nausea isn't too bad, I managed to down a piece of toast with peanut butter and jelly. Muscles are less weak, capable of making a fist easier than yesterday. Noticable improvement from the 20 mg on fluoxetine.

Fatigue in the evening much less noticeable. Rocking symptoms are relatively the same, but the fatigue is lessened, making them seem less bothersome. Still a 5 - 6 though. Nausea is less, thankfully. Still not 100, but I actually had cravings today.

Jan. 29th, 2007


whatever we lose

The name of this journal, Whatever We Lose, comes from some lines of an e.e. cummings poem, "maggie and milly and molly and may":

for whatever we lose (like a you or a me)
it's always ourselves we find in the sea

It's weird that this illness plagues me - I've been a water creature since childhood. There are far too many pictures of me frolicking lakeside and I've been that rare female who feels totally and completely comfortable in a bathing suit. I've loved the ocean since I first encountered it, and despite being saddled with motion sickness upon the first boat ride of any "season," I've always loved boating as well. Who was to guess I'd step off one and be upon it perminately? Or that it would bother me so? But really, when you're standing on solid ground, it does get to be a little disconcerting to feel as if your self is rocking when nothing else is.

I've lost things this year. Most importantly, a part of myself. I'm searching for it again, who knows if I'll ever find it. A year ago I was a far more optimistic person, but over the course of this year this illness has worn me down, eroded my hope and sense of possibility. It's there, still, crumbling ever so slightly at the edges.

I've always believed that things happen for a reason. What reason is this in my life? I have no fucking clue yet. I'm angry and depressed and beg God to stop it, only to curse Him when nothing changes. Logic and justification have not yet applied themselves in this case - I fear it may take a long time for them to do so. But the old me, the me that had optimistism, knows there's a reason I'm going through this. Even if I don't know the reason for years to come. And so, somehow, I know I will find myself again. My new self will be born from the angry sea I ride each day. It has to.

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