So, um... HI! Your friendly (though woefully inadequate) neighborhood non-astrophysicist under-achiever here!

The pity party is over. Obviously.

Now I am home and reveling in the fact that I've made it through my third Tysabri infusion and I'm feeling... tired. Yeah. So no change. But on the upside, I had no rash, no hives, nothing remarkable. Yay! I also got to see a couple of my favorite nurses at the outpatient infusion clinic and the IV insertion was painless and left zero bruise. Would that that were the case every month. As someone who's had her fair share of IVs now, I can say my favorite nurses are the ones that a) can insert an IV and/or draw blood while I feel absolutely nothing, b) said IV does not leave a bruise or mark of any kind after the IV is removed, c) offer me a pillow and nice warm blankets and d) bring me Diet Sierra Mist and a sandwich.

I mean, if you have to be stuck with needles and sit there for two hours and watch some poor old woman get her blood transfusions, the least they can do is offer you a sandwich. Right?

Continue reading "Tysabri Infusion #3" »

Posted by Zee at 08:36 PM | Permalink | Comments (2)

I had a sort of epiphany this weekend. It was this: that beyond taking the best care of myself I can and doing what my doctors suggest (within reason), I have zero power or control over my health issues. As I noted with the title above this revelation involved both a feeling of relief as well as a Homer Simpson sort of Doh!, smacking your forehead sort of feeling, because, um... DUH - I'm really not in control here. Of my body's inner workings or the world or the universe or anything else.

Subconsciously I knew this, I think, but consciously I blatently ignored it by putting on a brave face and just muscling through whatever was going on at the time. I'm not entirely sure from where this tendency stems but I think one of the biggest factors is with a complete lack of acceptance of my limitations. We talk about acceptance a lot in the twelve-step program I attend: acceptance of others' behaviors, situations in the universe and everything else that is beyond our control. And one key thing I try to remember, always, is that accepting something doesn't necessarily mean I'm going to like whatever it is I'm accepting. I just have to make peace with the fact that something is the way it is, and learn how to live with it as it is, to the best of my ability.

Continue reading "The Duh! Epiphany" »

Posted by Zee at 07:02 PM | Permalink | Comments (1)

Today I had several appointments and to avoid having to scramble around and drive back and forth between my apartment and the doctors' offices, I just took the day off work.

First was a visit to The Good Doctor (my neurologist, for those of you who are just joining us), who - despite having a fairly open calendar - kept me waiting for more than 30 minutes. I make it a point, when I can, to schedule my visits with him first thing in the morning and he still cannot seem to call me in on time. I don't get it.

So, (lack of) punctuality aside, it was a decent appointment. My neurological exam produced nothing to cause anyone any concern and my response to the Tysabri has been good. So, he gave me orders for my annual MRI (oh goody!), a new prescription for my sleeping pill of choice (hooray Sonata!) and sent me on my way with an appointment to see him in three months.

Continue reading "Medical Appointment Day!" »

Posted by Zee at 07:37 PM | Permalink | Comments (1)

Last Friday, my team had an all-day, off-site meeting at McMenamin's Edgefield, a large estate east of Portland (in Troutdale) that is home to a variety of different sources of entertainment: a hotel, a spa and soaking pool, a number of hotel-like places to sleep, a couple of restaurants... I could go on. It is a lovely place and on Friday the sun shone brightly and it was warm and beautiful out. We spent most of the day indoors, but there were a couple of outdoor activities that had us traipsing through the grounds looking for various items.

This was fun, yes, but it went on for about 90 minutes and by the time we all got back to the room in which we were having our meeting, we were all hot and sweaty and many of us had allergy-eyes (and noses and throats) due to the pollen and grasses and whatnot on the grounds of the estate.

After our "formal" event ended, several of us sat outside eating and drinking and enjoying the weather.

Continue reading "That Sun, She's a Bitch..." »

Posted by Zee at 06:57 PM | Permalink | Comments (1)

So it's been rather a busy sort of week, and yet here I am - more than a week from my last post - and I've got absolutely nothing to write about. So I thought I'd give a general update of sorts on my activities since I last wrote anything of substance, in case anyone cares or is worried about whether I've suffered an attack of PML:

So, for starters, no PML. I am PML-FREE! I had my second Tysabri infusion on Friday and, as with the first one, I came home, went to bed and slept for most of the day. I'm not sure whether it's the Tysabri itself, the process of getting the infusion (dealing with the needles and setting up the IV, etc., etc., etc.,) or some combination thereof, but sleeping after my infusion seems like the best way to spend my day.

Oddly, though, I've been feeling pretty run down and tired the last couple weeks (beginning before my most recent Tysabri dose) and so I've been sleeping a lot anyway. So perhaps I'm staring a relapse in the face and just not realizing. In that case, I think sleeping a lot might be my best defense.

Continue reading "Things I've Done This Week" »

Posted by Zee at 06:26 PM | Permalink | Comments (2)

So it's been just over 3 weeks since my first Tysabri infusion, and I'm slated to go for my second infusion this Friday. In general, this month has been fairly smooth. As I reported that day, I had no allergic-type reactions during the infusion and the worst "after-effect" I had was a bit of a bruise on my right arm that has long since disappeared.

However, what I have noticed is this sort of "manic" feeling: one of my close recovery friends told me she thought I seemed pretty "hyped up" the day of the infusion and since then I've calmed down only a little... On top of that, I have had trouble shutting my brain down at night and getting to sleep. I knew these things were a bit of a problem, but last week I noticed I was starting to feel anxious and self-conscious and a bit paranoid. And when having a big glass of wine started sounding like a really good idea, I picked up the phone and called my shrink, who was able to get me in on Saturday afternoon.

Continue reading "Tysabri Report: 3 Weeks Later" »

Posted by Zee at 07:37 PM | Permalink | Comments (3)

So I went this morning to the infusion center and once I had signed my life away, declaring that YES, I MIGHT DIE because of this drug and they got the IV in my arm, I decided to be clever and do what all the geeky technology bloggers do when they go to a trade show: they power up their laptops, sign on to the wi-fi network and proceed to regurgitate everything the keynote speaker is sharing, posting at various intervals for an audience that is doubtless sititing at home on the edge of their seats waiting to find out about whatever the fabulous keynote speaker is talking about.

Anyway, so knowing that I had Wi-Fi access and that I can access my Movable Type installation through my cell phone, I thought it'd be fun to entertain myself by telling you all about my first Tysabri infusion, while it was happening.

Continue reading "Live Blogging Failure: How I tried to tell ya'll about my Tysabri in "real time"" »

Posted by Zee at 09:10 PM | Permalink | Comments (1)

So things have moved forward quickly on the Tysabri front! I got a call from my insurance Tuesday along with the call from the Biogen people, and yesterday the Hateful Shrew called to give me the number to the infusion center and tell me to make an appointment. And no sooner did I get that call (and run around my company's office building for 6 hours of meetings, all in different rooms) that the infusion center themselves called! I missed that call too, somehow, but when I got home from work I called the Biogen people back and answered their questions and then called the infusion center and, lo and behold!, they had an appointment on Friday at 8:30 in the ay em.

So tomorrow I go in bright and early to get pumped full of The Green Goo that is Tysabri. (Actually, I know it's clear. It's just that the stuff has such a persona of its own that I imagine it as being a sort of fluorescent green goo. I don't know why... Perhaps because I am insane. Hard to say.)

ANYWAY...just wanted to give an update on the MS front and tell ya that I'll tell you all more tomorrow after the appointment! Now I just have to figure out what I'm going to do while I'm sitting there for two hours: read a book? Play Ms. Pac-Man on my cell phone? Sleep? Maybe I'll just take a crossword and hope for the best...

Posted by Zee at 08:08 PM | Permalink

So I got a call from my health insurance today, letting me know that my Tysabri had been pre-approved. I spoke with my insurance folks for a while because, as an infused treatment, Tysabri is paid for out of my medical insurance benefit rather than my prescription medication benefit and I wasn't sure what that meant for my out-of-pocket costs. What I found out was this: it means a whopping $500 out of my pocket each year for this treatment... Guess I know now where my "economic stimulus" check is going: to stimulate Biogen's coffers. Sigh.

Still, I am grateful to have insurance that covers the majority of the cost; it really is a blessing and something I am mindful of whenever I look at my Explanation of Benefits statements my insurance sends. And I'm gratefuI that, as a result, I get to take advantage of this new, more effective medication!

Anyway, I also received a call today from the Biogen Idec people ("at the request of my doctor") to, I assume, schedule my first infusion. I didn't actually talk to these folks because my cell phone was turned to "silent" and I missed the call. However, I will call them back on Thursday (in back to back meetings all day tomorrow) and hopefully I'll get my first infusion within the next 30 days!

Stay tuned - I'll let ya'll know how it goes...

Posted by Zee at 09:34 PM | Permalink | Comments (3)

Last Friday, one of the things I did was fill up my car's tank with gas. This month, thanks to the ever-increasing costs of gasoline in the country, I budgeted an extra bit of cash towards my gas costs. When I filled up on Friday, I had about a quarter tank left, leaving a little extra cash left over from what I'd budgeted.

Now, I could have reallocated that extra $6.93 towards miscellaneous expenses or groceries or whatever, but I decided to put that money towards one of my debts, with the thinking that every little bit helps. So this morning I "snowflaked" for the first time: I transferred $6.93 from my checking account to the overdraft line of credit that I ran up a while back when I wasn't paying sufficient attention and being lazy (this is pre-money-breakdown in September...)

Other than my student loans, this line of credit is the only item I owe on for which I can pay online, so this debt is going to be the first recipient of my "snowflakes" as I gather them up. My goal for May is to carve out $25 extra by "snowflaking" and put it towards the LoC. I'll report back next month on how I did.

Wohoo! (And for more on Snowflaking, click here.)

Continue reading "Snowflake #1, Plus a Bonus Report: the Neurologist Visit!" »

Posted by Zee at 05:45 PM | Permalink | Comments (3)

As often happens while I'm cleaning up the day's dishes, today while standing at the kitchen sink I had a bunch of phrases and blogworthyish thoughts pop into my head. What also often happens is that by the time I get back to my laptop I've forgotten said phrases or ideas. Today that's only half true. The thought I had while standing at the sink this evening was, "warm brownies with butter pecan ice cream on top is like a little piece of heaven right here on earth."

And then, right that minute (because I have no self-control) I served myself up a brownie (left-over from my visit w/ a friend on Sunday), heated it ever-so-slightly in the microwave and scooped the last bit of Haagen-Dasz Butter Pecan on top. And now I'm eating it and writing to you all about it and.. well... YUM.

So I don't have a lot to say tonight; no words of fiscal wisdom, no schemes for World Domination a la Pinky & the Brain, not even much in the way of "life events." But there are a few things I've been meaning to share and a couple things that have sprung up this week that I thought I'd blog about for your entertainment. Or mine. I'm not sure.

Continue reading "Scrapings from the Bottom of the Barrel" »

Posted by Zee at 08:44 PM | Permalink | Comments (4)

So it's been a while since I last posted, but that has more to do with my being too tired to think after a long day at work than it does with lack of anything to say. Well, that's not entirely true: some days I'm so tired I can't think of anything worth saying.

Anyway. So after talking to a friend who's had thyroid issues for years and doing some research on the web and leaving an unreturned voicemail for The Good Doctor, I finally made a follow-up appointment with my internist to discuss the Thyroid Thing. Because, despite having stopped taking the Copaxone three weeks ago, the fatigue and lightheadedness and cold feet and whatnot continued.

Yesterday I went in to see her and was promptly given a prescription for Synthroid and told to make an appointment in 6 to 8 weeks for another set of labs and follow-up. We're still not entirely sure what is causing what, but I started on the new medication this morning and I'm hopeful that there will be positive change. Perhaps, even, positive enough that I can restart the Copaxone and feel somewhat decent on it.

Continue reading "The Continuing Misadventures of Thyroid Girl" »

Posted by Zee at 04:10 PM | Permalink | Comments (2)

Last week, I went to see my internist for my annual lady-bits/physical/whatcha-ma-hooey exam... I got the results back today and, while my reproductive system appears to be normal, my glands appear to be out of whack: I was a bit surprised to learn that my (T4) thyroid level is slightly low. (The TSH Thyroid test, however, was well within desired levels.) Still, my T4 level was low enough that the doctor wants me to make an appointment to discuss low-dose thyroid replacement therapy.

I don't know about the rest of ya'll w/ MS, but the thought of taking even one more medication makes me want to weep. When I was diagnosed with MS I was already on anti-depressants and allergy meds and the occasional sleeping pill; then we added the MS drugs and then we had to bump up the ADs and add in another one altogether, just to counteract the side effects of the new drugs!

Continue reading "...Because Being on Seven Different Medications Just Isn't Enough" »

Posted by Zee at 10:58 PM | Permalink | Comments (6)

I don't think I've ever truly had a nervous breakdown. I mean, I've gotten really freaked out before, and a little bit nuts on occasion (okay, often) but completely losing my shit? Doesn't happen very often.

But, people, last week? Hands down, the single worst week of my professional life. (And I'm including in that the two-and-a-half week, cross-country press tour which culminated in my first - and so far only - bout with Optic Neuritis.) And it's not even one Big Huge Thing that happened last week to put me over the edge; rather, it was some toxic combination of too much work coupled with not enough people to do said work, topped by everything going wrong that could go wrong and sprinkled with a number of tiny little nitpicky things showing up over the course of the week adding up, all of which resulted in me working 45 hours over the course of 4 days (two of them being 13-hour days).

By the end of the day on Thursday I was near tears and, quite literally, could not string together a sentence more complex than, "I'm soooo tired," or "Umm... no." (And, strictly speaking, that last one isn't exactly a sentence...) And the saddest part was, I couldn't even take the entire weekend off: I ended up working about 6 hours yesterday as well, just to catch up on the things I should have done last week while I was busy fighting fires.

Continue reading "Losing it. For Real" »

Posted by Zee at 09:22 PM | Permalink | Comments (1)

So I am back! Back from my (unintentional) blogging hiatus, back from my mini-break to the Oregon coast with Mr. Norris, back to "real" life. And real life, apparently, includes more fatigue. And more depression. And some regular ole crankiness that stemmed from said depression and fatigue, and also from trying to vacation peacefully with one's significant other.

People, Mr. Norris is a saint. I mean, he doesn't have a halo or anything (at least, not one that I've seen), and I'm pretty sure he's not dead and that he's not been blessed as such by the Pope in Rome, but the fact that he puts up with a very cranky and depressed me, and seems to like me anyway... well, that is pretty remarkable. Frankly, I think I'm getting the better end of the deal in this relationship, but he seems happy so I'll take it.

So, the weekend:
Thursday night, Mr. Norris arrived around 7 and we hung out and talked for a little while and then opened gifts and ate some salad while we waited for dinner to finish cooking. Our valentine's day, and indeed the whole weekend, was very low key: I made herb roasted Cornish Game Hens (because those little birds are so darned CUTE!), roasted baby red potatoes and steamed green beans for dinner and our gifts were similarly small and low key. He gave me a couple of cute and sweet cards, Season II ofBoston Legal, and a yummy vegan raspberry treat. I got him a Moleskine Sketchbook, a skin kit for men by Dermalogica (my favorite skin care products ever) and some yummy little treats like PEZ and Ghiradelli chocolate squares filled with caramel, along with a card. All in all, a very quiet and enjoyable if not uber-romantic evening. (Which, let's face it, is a bit over-rated to begin with...)

Continue reading "Post-Valentine's Day Report" »

Posted by Zee at 05:35 PM | Permalink | Comments (1)

People, I've been BUSY! And by busy, I mean, I've been doing something besides going to the neurologist and/or writing on my blog complaining about my neurologist!

Mostly I've been spending time with Mr. Norris, which is delightful and lovely. We've continued to learn about one another and deepen our relationship. I will leave it at that for the moment: suffice to say we have yet to exit the sickeningly sweet stage and I couldn't be happier.

Yesterday we went over to his friend's house for the Super Bowl, so I got to meet several folks who've known him for long periods of time. They were quite nice and, I'm happy to report, seeing him with his friends made me like him all the more. (I don't understand how, or why, that is, so I'm just going to go with it...)

Despite the party being on Super Bowl Sunday, it could most accurately be described as a "Multi-player Halo 2 Party." This involved networking together a number of XBoxes in order to accomplish mass alien killings over the course of several hours. I only managed to rack up about 12 kills in the 8 or so games we played, so as you might guess, I was not all that well-respected for my Halo-playing skills. Still, I earned big brownie points with Mr. Norris, who earned the respect of his buddies. (Apparently, girlfriends who like to play video games are something of a rarity.)

Next weekend, for Valentine's Day, we're headed to the coast for a couple nights. Should be great to get away for a couple days and spend some romantic time together. And also, I think it'll be a good test of our ability to be together for hours on end: if we don't want to kill each other after 48 hours straight, we'll be in great shape for a long-term relationship! (I don't expect any problems in this area, but never hurts to do little experiments, right? ;-)

Continue reading "In which I actually DO something with my life..." »

Posted by Zee at 06:21 PM | Permalink | Comments (4)

Wow. So I am really starting to dislike my neurologist.

I went to my appointment this morning, my appointment that was to be the first appointment of the day. You would think "The Good Doctor" would be on time for the first appointment of the day, right?

That sound you hear is me roaring with laughter. In fact, not only was he NOT on time, but I felt distinctly sorry for this other woman who'd come in at 9:30 for her 10 am appointment with my doctor (I overheard her tell the receptionist)... I have no idea what she was thinking when it was 10:15, I was leaving and The Good Doctor was calling in his 9:30 appointment. I didn't have the heart to tell her that his being 45 minutes behind was a "good" day...

Me? I arrived promptly at 9 am, knowing there was very little chance I'd even be called at that point. As it was, I was called in around 9:40 or so, and the appointment - while rather brief - was frustrating and irritating.

Continue reading "What to do, what to say..." »

Posted by Zee at 06:14 PM | Permalink | Comments (3)

Holy cow, people ... remember this post? The one where I thought I was feeling better and boy-oh-boy this Copaxone stuff is The Shit and wow... life is great?!

Yeah, what did I know!?

On Saturday I finally got in to see my psychiatrist and - of all things - he prescribed Ritalin! Apparently there are a number of studies that have shown that Ritalin enhances the effectiveness of anti- depressants. Since I'm at the top dose now for one of my meds and he was wary of increasing that above the recommended dosage, he thought the Ritalin might work well - particularly given my lack of focus and general scatterbrainedness when depression sets in. So he prescribed the lowest possible dose to be taken up to 3 times a day (or as needed).

Continue reading "So this is how normal feels..." »

Posted by Zee at 10:33 PM | Permalink | Comments (6)

Well, in the ongoing saga of my battle against depression, I have finally made contact with the people at my psychiatrist's office! Huzzah! Triumph!

Or so I thought. I actually only talked to the receptionist, but my psychiatrist actually called me Friday while I was napping (so of course I missed the call) and when I called back this morning I gave the receptionist/assistant guy who answered the phone a brief run-down of my deepest needs, wants and desires as regards my mental health.

That list includes:
a) A recommendation from my psychiatrist as to the anti-depressant dosage(s) I should be taking while on Copaxone, and
b) To have my psychiatrist contact my neurologist to talk about my mental health: because my being in the middle trying to get things accomplished clearly isn't doing much good...

I meet with my shrink again on Saturday and my neurologist at the end of the month and, God willing, they'll have talked to each other by then and come up with a plan of some kind that meets my ultimate needs, which involve:
a) Not being depressed, and
b) Not having an MS relapse.

Continue reading "Restarting the Copaxone..." »

Posted by Zee at 07:30 PM | Permalink | Comments (4)

So after my little melt-down on Saturday, I decided to simply take a break from the Copaxone for a while: until I can see my psychiatrist and my neurologist and can get them talking to each other. I haven't taken my Copaxone since Friday night, and already I feel better: more hopeful, a bit more energetic - even somewhat cheerful. I don't know how much of this is due to the placebo effect and how much is due to an actual change in my body's chemistry, but whichever it is I'll take it.

In a lot of ways, I feel like I've spent the last 18 months of my life - since my MS diagnosis - not living. Sure, I've done things here and there over the last year and a half, but I look back on my life as it was in 2003 and 2004, before I left for Boston, and realized I was really living then. I went out in the evenings to do stuff like swing dancing or go to movies with friends. I gave impromptu gatherings and they didn't exhaust me emotionally or physically. I actually wanted to practice the piano and go for regular runs. And I did those things!

What I've done since my relapse in June of '06 is survive: in the beginning I was too tired to do anything anyway, and I didn't care that I wasn't going out and meeting people because I was too fatigued to do so. But as my relapse symptoms improved and I started on the Avonex, everything began to feel like a colossal effort and I did the bare minimum to survive.

Continue reading "A New Year and New Hope" »

Posted by Zee at 11:51 AM | Permalink | Comments (3)

If I read one more happy newspaper tale of someone with MS who is chipper and positive and taking their medicine like a good little person, I think I'm going to throw up.

I was poking around the Internet earlier today running searches trying to find out more about the connection between Copaxone and depression; I'll be damned, but I can't seem to avoid all those sickeningly-sweet newspaper articles about someone who's been diagnosed with MS but who is nevertheless "doing what it takes" to live a "normal" life. Or they're "beating the disease." Or their response is to suck it up and do everything their neurologist says because they're a Good Little Patient.

Barf.

If you need me, I'll be over here at MultipleSclerosisSucks.com, reading about what life with MS is really like.

Continue reading "Sour Grapes" »

Posted by Zee at 10:00 PM | Permalink | Comments (4)

One of the things I was really impressed with when I switched from Avonex to Copaxone was the quality of service I received from the Copaxone people: my doctor called in the prescription, they called me the next day to schedule the medication delivery and the nurse to come out and train me and they brought a lovely little binder (of which my mother is now the proud owner) in which to keep all my information and generally were pleasant and easy to work with. They even called a couple times to check up on how I was doing and answer questions, in addition to sending me all kinds of lovely little "gifts" like a travel case for the Copaxone and freezeable gel-packs for icing my injection site, and called every month to schedule my shipment.

All this lovely sort of stuff came to an abrupt halt this month for reasons I don't really understand. A couple weeks ago, realizing I had only 11 doses of the Copaxone left, I picked up the phone and called my "specialty" mail order pharmacy. A nice lady answered the phone, took my information and then promptly transfered me to someone else. Err.. ok. Fine. I commenced explaining my need to re-order my medication (and had to tell her my birth date and mother's maiden name AGAIN... ARGH) as she asked questions and took down my information.

Continue reading "The Great Copaxone Catastrophe of 2007" »

Posted by Zee at 08:35 AM | Permalink | Comments (3)

So uh... Hi! I'm still here, in case you were wondering... I just haven't had a lot to say over the last couple weeks, primarily because of depression that's been so severe it was all I could do to get out of bed in the mornings.

Last Saturday I hit rock-bottom in terms of my ability to cope with life and the brain God graced me with. The day started out okay, but by mid-afternoon I had a nasty headache and felt pretty down. I cancelled the plans I had and settled in to have a quiet evening in with the dog.

And then I crashed. Literally: I sat down on the couch and didn't move for quite some time. I'm not sure how long, because I didn't have a clock handy, but I ended up staring blankly at the television - which was off - in a kind of dazed stupor for several hours. I couldn't even bring myself to turn on the TV and find something to watch that I was even remotely interested in. So I sat there until it seemed like an appropriate hour to go to bed.

Sunday I felt slightly better and by Monday I was chomping at the bit to get in to see my psychiatrist. He was able to see me for a quick appointment in the late afternoon and thankfully I had work to distract me until then. He bumped up one of the medications I'm on, said I should start seeing some improvement in a couple days and suggested we re-evaluate when I went to my scheduled appointment the following Saturday.

Continue reading "The "wonderful" world of pharmaceuticals..." »

Posted by Zee at 09:02 PM | Permalink | Comments (9)

I am exhausted. This getting up early thing? I don't like it so much and my body appears to be rebelling. The last couple days I've been able to work for about 4 or 5 hours before my brain shuts down and I start to feel that bone-crushing fatigue thing. It just feels like... well, I can't even explain it. It's like my entire body just wants to shut down completely, starting with my head. Those of you with MS (or other auto-immune-type disorders) know, I'm sure, of what I speak. Thank GOD I don't have to work this shift next week! As it is, I'm planning to sleep in Saturday morning and, if I'm lucky, for most of the day... I'm sure my crummy eating habits this week are not helping matters.

But anyway... when I get like this the hardest things become even more difficult and the easiest become a challenge. So it was not exactly surprising to me that the process of listing a couple items on eBay completely befuddled me. I tend to sell most things on Amazon.com and I love doing so because it's easy to list items, it's easy to track them and it's easy to get information when needed. It's also super-easy to get paid. For selling items that Amazon sells, it's great. But for items like jewelry or other collectibles, eBay seems the better choice.

Continue reading "Going, Going, Gone!?" »

Posted by Zee at 08:33 PM | Permalink | Comments (1)

Athough I usually don't write about work, I have to report that we got an email from our HR department today letting us know that we are switching health insurance companies beginning in the new year. Turns out our existing insurance company had a rate increase of nearly 30% for the coming year (with "cost-saving campaigns" like this, I'm not surprised...) so my company did research and chose a new provider. (One with RBCBS as its initials and "Blue" as its signature color....)

The good news is that my neurologist, my internist and my psychiatrist are all "preferred providers" with the new insurance company. Additionally, it appears that Regence will also cover my Copaxone and most of the other medications I'm on. The bad news is that, at a glance, it appears that our out-of-pocket costs for office visits and drugs are going to go up. It also appears likely that alternative care is going to be signficantly cut.

Obviously, we've not gotten much actual information yet so this may be blind speculation on my part. The company itself is not terrible, honestly. I had them when I was in Boston and then again when I came back from Boston and had to get on the Oregon Medical Insurance Pool. (They would have been better in the latter case if I'd picked a plan with a lower deductible.)

Continue reading "Healthcare Changes..." »

Posted by Zee at 07:52 PM | Permalink | Comments (6)

And that's about the extent of what I have to say about Halloween. I hope y'all are enjoying your night of ghostly goblins and doorbells ringing and dogs barking at aforementioned doorbells. I, myself, have had a grand total of ZERO trick-or-treaters, despite the great sacrifice I made in purchasing a bag full of fun-size Twix. (Which makes me wonder: what, precisely, is fun about those teeny-weeny-sized candy bars? In my world, the more chocolate and gooey-caramel-goodness, the more fun. But hey, maybe I'm an anomaly in the candy-eating world.)

And, alas, despite the dearth of small people dressed like the undead, Rennie has, in one swift movement, jumped off the couch, run to the door and started barking no fewer than 6 times already. (It is only 7:30, dog. Let's save our energy!)

Anyway, the really fun part of my day occurred much earlier...

Continue reading "Happy Halloween!" »

Posted by Zee at 07:25 PM | Permalink | Comments (2)

The wonderful Neurologist of Ozzzz.....

Wait, wrong musical.

Anyway... tomorrow is my long-anticipated appointment with my neurologist wherein I get to have a neurological test and be told that things haven't changed at all (yay! I think?). All that is neither here nor there. My MS feels fairly stable and aside from the ever-present sensitivity issues that - at this point - are unlikely to go away, I am feeling good these days. Even the Copaxone has settled down to the point that I no longer have much trouble with injection site reactions. (Good gravy, people: I've been on Copaxone for three months now!! When did THAT happen?)

I'm taking my mom with me to the appointment tomorrow, along with that letter sent by the lovely and talented scheduling secretary requesting I send her a check for $25.

Continue reading "Off to see the Neurologist!" »

Posted by Zee at 09:54 PM | Permalink | Comments (2)

I stopped by the post office today to check my PO Box and in it were a number of useless items. The most entertaining (and also slightly disturbing) item, however, was sent by my health insurance company to help encourage me to to talk to my doctor about the myriad of medications I may or may not be taking. In this case, I think a picture is worth a thousand words:

Continue reading "Absurdities" »

Posted by Zee at 08:07 PM | Permalink | Comments (2)

Ever had one of those weekends where everything is leisurely? You get up each morning, laze about, have a cup of coffee while you eat breakfast and read the paper... Yeah?

Those are nice kinds of weekends. That is exactly NOT the kind of weekend I had this weekend.

I've been moving non-stop since 7 am Saturday morning and am only now sitting down to think for the first time in the last 48 hours. Some of the things I've done in the last two days include:

1. Made baked beans from scratch - complete with bean soaking and 4 hours of baking and ... OOPS... thought I had molasses but I don't!
   
2. Went to two meetings (one each day)
   
3. Cleaned the oven
   
4. Made roast chicken, which was very tasty but nevertheless managed to fill the house with smoke from the gunk on the bottom of the oven, despite the vigorous cleaning it received.
   
5. Tested the smoke detector (see #3 above). It works!
   
6. Scared the living daylights out of the dog (see #3 above), who went running under the bed to escape the smoky living room.
   
7. Managed to save the gizzards, as well as the bones, from the chicken so I can make my own chicken stock. I'd originally planned to do that tonight after cooking the chicken, but the idea of doing one thing more is making me want to weep!
   
8. Two loads of laundry
   
9. Cleaned the bathroom
   
10. Clipped a bazillion coupons
    
11. Went to the grocery store and used said coupons.
    
12. Bought a book about creating an online store with osCommerce so I can finish up a website for a client.
    
13. Reviewed and re-balanced my budget
    

Things I wanted to do this weekend? In no particular order:

• Practice the piano
  
• Sit on my rump and read a book. Any book - I've got three I'm working on right now and I didn't make time for any of them!!
  
• Brush the dog. (This may still get done tonight if I can motivate myself...)
  
• Catch up on my blog reading and leave comments for people I've been neglecting!
  
• Finish writing up directions for updating a website I created a couple years back and have been updating. (I'm passing that "torch" on to someone else and keeping my fingers crossed that she doesn't muck it up TOO badly...)
  
• Paint my toenails.
  

So, despite not getting some things done that I wanted to get done, I still managed to be pretty productive. And I'm not sure about the rest of you all, but going back to work tomorrow morning is going to constitute a welcome break from busy-ness for me!! :-)

Continue reading "Shades of Black, White and Everything in Between" »

Posted by Zee at 09:04 PM | Permalink | Comments (4)

I haven't written much about my MS over the last couple months (save for a bit of whining about the Copaxone) because things have generally been ok for me on that front.

A few of the symptoms I had left over from my relapse in June 2006 have persisted, and include numbness and tingling in my left foot, leg and the left side of my lower back, in addition to that weird MS "itchiness" that shows up at random intervals and in various places. For a while I held out hope that they would fade away over time and occasionally I've woken up in the morning and thought, "wow, that left foot feels almost normal!," only to have the numbness come back with a vengeance a day or two later. I've slowly begun to accept that these symptoms are probably going to be around for good.

Continue reading "Multiple Sclerosis Delusions: Update" »

Posted by Zee at 10:36 AM | Permalink | Comments (3)

I went for a run today. It was the first run I've attempted since April and it wasn't too bad. It was a short run (roughly a mile) to keep myself from overdoing and angering the IT Band Gods, and it seemed to work from that perspective.

It should go without saying (given the dearth of discussion about it here over the last 6 months...) that the Portland Fit thing I was talking about earlier this year didn't exactly pan out this year. Umm, oops?

I have the excuse that I've been working full time and going to school part time and wahhh boo hoo, I just didn't have time. Oh, and also? I have MS. And I was tired. And there was a lunar eclipse a couple weeks back. And I ran out of tuna fish. All of which I have used as excuses for NOT exercise and all of which are ridiculous reasons not to run. (Well, except maybe the tuna fish one: that's a perfectly reasonable excuse for not running...)

Continue reading "Today, I ran..." »

Posted by Zee at 09:09 PM | Permalink | Comments (3)

And doncha know it, it's not even over yet... And it's been a SHORT work week, to boot.

So Monday I spent the entire day working on my final project (hooray!) and Tuesday I woke up with a completely stuffed up nose and sinus pain, feeling totally miserable. Which sucked, of course, because it's kind of hard to eat anything more than small bites of food and still breathe at the same time.

So I got as little work done as I could get away with (which took up most of my 8-hour day, incidentally), ran down to the pharmacy and picked up some homeopathic saline nasal spray stuff and some completely-non-natural, drug-filled sinus-relief pills, neither of which did me much good. I went to bed at, I think, 9:30 pm.

Yesterday I awoke feeling pretty close to normal, which is good because I had plans with some friends to have dinner after work at Le Bistro Montage. Montage is a cajun place just east of the Willamette river under the Morrison Bridge, here in Portland. It's a bit of an icon, mostly for its oyster shooters, the surly waitstaff that yells to the kitchen for the aforementioned shooters at the tops of their lungs, and creatively-wrapped doggy bags.

(I say "bags" when what I really mean is "foil-creations." They wrap your left-over food in plastic wrap, then they wrap it in foil and create some kind of critter or sculpture out of it. People have been known to get roses or swords or bunnies or dinosaurs or any manner of other things. Last night I got something that looked like the Alien in the movie, "Alien", complete with the claws, while others in our party got a hermit crab, an alligator and something that looked like a cross between a bunny and a duck. We're still trying to figure out what it is.)

Anyway, my point is that the place is well-known and, like many who've lived in Portland for any length of time, I've been there a number of times and have never had a (really) bad experience. They make comfort food: buttermilk fried chicken and potatoes, a variety of different "mac & cheese" dishes (including "Green Eggs and Spam"), deep-fried alligator "bites" and a number of other goodies. Last night was no exception: we all had a nice time and I even managed to stay well under my allotted budget, which is always a good thing!

Continue reading "Wow, what a week!" »

Posted by Zee at 07:10 PM | Permalink | Comments (1)

People, guess what. I have some grey hairs!

I'm not bragging. No, no I'm not. Really. (Because, well, I've had a few grey hairs since I was 19. Sad but true.) Anyway, I mention it as the "intro" into discussing my latest multiple sclerosis treatment.

About 5 years ago I started having my grey hairs covered with a semi-permanent color that matched my natural color in order to keep the tricksy little buggers from showing up and making me look Old. And all was fine and dandy and no one except my mother noticed the coloring or the grey hair or anything. (Or if they did, they were kind enough to not mention it...)

Until recently. The last few times I've had the color put in I've noticed that the grey hairs seem to show up again after about 2 weeks. In other words, the color is washing out much more quickly than it used to. I found this a bit disturbing (particularly considering how much I pay to have it done!!) and so today, at my hair appointment, I asked my stylist about it.

She knows I have MS and asked me if I was on any new medications. Well, um, YEAH. A couple drugs. Here and there.

Anyway, did you know that the drugs you put into yourself come out in your hair? I think I knew this at one point (they use hair sometimes to test for illicit drugs and, um... I have no reason to ever have worried about this kind of testing... Hey, look over there! Something shiny!) but had completely forgotten it until talking with my stylist today.

As regular readers know, I switched to Copaxone almost 6 weeks ago after being on Avonex for a year. So my stylist suggested this might be the problem and suggested we change the ratio of dye to developer in the hair color mix and see whether the color sticks around longer this time around. It may not and at that point we'll re-evaluate our approach. But heck, you know, you learn something new every day! (And now ya'll know I'm Old before my time.)

Continue reading "Yet another fun result of MS medications...." »

Posted by Zee at 09:02 PM | Permalink | Comments (4)

Wow. Well, it's been quite the busy day today! Actually, it's been a pretty busy week, what with volunteering with a group of folks from work at the Oregon Human Society on Thursday and today's activities of helping Fran move, driving around town with dad looking for an area rug and then scrubbing every speck of schmutz from the kitchen!

The humane society project was helping to maintain the dog-walking path they have out there and that involved shoveling loads of mulch (read: manure) into wheelbarrows, which were then taken out to various areas of the walk and spread onto and around the plants. By the end of the 2 hours we were all totally wiped out. However, it was fun, and nice to catch up with friends and meet new co-workers!

After spending more than 2 hours in the hot sun, though, I was feeling quite wilted. Still, I'm shocked by how much better I feel, how much energy I had on Thursday to do this sort of thing and even had enough energy to go to the company's picnic afterwards!

I got up quite early this morning (for a Saturday) and headed out to Fran's house to help pack her up and move her in with her fiancee! I finally got to meet the fiancee's pooches (two little chihuahuas) and they are adorable... And then I headed out to dad's, where we hopped in the car and drove all over kingdom come to check out area rugs.

These suckers range in price from about $99 (at Fred Meyer) to $3500 or more (at NW Rugs). We, of course, found one I liked for the budgeted price (dad was buying the rug for me for my birthday!) at the first place we went and thus ended up going back there two hours later and taking it with us. It's a neutralish color with green accents that match my couch. So it's all good. Rennie likes it because she can now jump off the couch without sliding a foot on the hardwood floors; I like it because it gives the room a cozier feel to it!

After dad left, I did some weeding out in the front yard (the dandelion garden I've been "cultivating" was in desperate need of attention, as the flower stalks were taller than Rennie!) and then cleaned and mopped the kitchen. It was just gross in there and now it is not gross.

After all this hard work, though, I've spent the last couple hours sitting on the couch watching Little House on the Prairie. I brushed Rennie - that's about the extent of my activities for the evening. I'd intended to do some homework but, well, that just didn't happen. Oops!

So, tomorrow! Again, though, I was really active today - more so than I've been in months - and I still feel pretty good! Progress!! I don't know if the Copaxone is doing anything for my MS, but being OFF the Avonex sure is making me feel better! YAHOO! (Never again, people: I will NOT go back to the Avonex. The benefits are just not worth feeling that crappy all the time.)

In other news, I got my test results from my neurologist's office. Guess how much they charged me...

Go on, guess!

Continue reading "Busy, Busy, Busy!" »

Posted by Zee at 09:44 PM | Permalink | Comments (6)

A couple weeks ago, I followed my neurologist's orders and went and gave bodily fluids for testing. My neurologist typically will call me with my test results after a week or so but it'd been a few weeks so I decided this afternoon to give a call over there and have my results sent to me. Given my naturopath has me on a rather high vitamin D supplement, I was curious to see what my current levels were and to report back to her.

The receptionist/scheduler lady (remember her?) called me back about an hour later and told me she could fax me a copy of the document. Well, I do not have a personal fax machine and prefer not to have my blood test data faxed to my work fax number (which is then scanned and emailed to me) so I asked her - quite reasonably, I thought - to just stick a copy of them in the mail. Another receptionist/assistant person had done that for me previously and it was no big deal. Our conversation went as follows:

Continue reading "On the War Path..." »

Posted by Zee at 03:21 PM | Permalink | Comments (4)

Interesting bit of news coming from Newsweek and Agence France-Presse this weekend. They've apparently identified a gene, called interleukin-7 receptor alpha on Chromosome 5, linked to Multiple Sclerosis which "appears to increase the risk of developing MS by 20 percent." I found this paragraph to be interesting:

Scientists have also looked to the environment for potential causes of MS. Suspects include an unidentified virus that preys on genetically weak immune systems, vitamin D deficiency and smoking. "This paper doesn't answer the genes versus infection question one way or the other," says Rodriguez. "The answer is that we still don't have the answer."

Indeed. What's interesting in my case is that no one else in my family has MS (though there is fibromyalgia and chronic fatigue syndrome), no one has diabetes. I did have very low levels of Vitamin D in my system but I've never smoked and had a pretty solid immune system up until (at least) the optic neuritis showed up...

More telling is this:

In a third paper, published in the journal Nature on Thursday, Lawrence Steinman and his colleagues showed that Cryab, a protein found in the human eye, protects brain cells during the early stages of MS. As the disease progresses, however, the immune system destroys this protein. "Giving Cryab as a therapy could be a future treatment to slow the progression of MS," Steinman says. His study also leaves the question of what causes MS unanswered.

So finding this new gene on chromosome 5 is all well and good, but... you know... so what? It still doesn't conclusively give us information about what causes the disease. It appears, at least to me, to provide more information on who gets it rather and how, not why. And even that's not terribly helpful...

I dunno - I'm not sure the "why" is even all that important if they can figure out how to repair the myelin quickly, post-relapse. For what it's worth, I'm putting my money on stem cell research...

In other news...

I have been feeling significantly better - emotionally and physically - over the last week. My energy levels are up, I don't feel fatigued and my mood is vastly improved!! I don't know if the Copaxone is doing anything for my MS, but getting off the Avonex certainly has helped me to feel better. The Copaxone injections continue to be minimal problem whatsoever. (Though, oddly, I've found that they don't cause trouble anywhere except my legs. I don't know why that is, but my legs apparently don't like the stuff. Decreasing the needle depth seems to help, however...)

Despite my improved mood and health, however, my motivation to do schoolwork doesn't seem to have changed at all. I have zero idea why this is the case. Hopefully I can get myself motivated before too long, tho. Wish me luck!

Posted by Zee at 12:48 PM | Permalink | Comments (2)

So last night, the Copaxone injection was given post-shower into my right arm, when my capillaries - they say - were more open.

The results?

Compared with my left arm injection Saturday night, last night's dose definitely included more stinging and was more painful. The end result, however, was the same: small lump and feeling of bruising around the injection site.

So there you have it. (Needless to say, I'm going back to the ice.)

Interestingly, one of the Copaxone folks just called and in talking to her she mentioned that sometimes the lump/bruising feeling results from the needle going in too deep. So I'm going to fiddle with the needle depth a bit over the next week and see how it works!

Posted by Zee at 10:37 AM | Permalink | Comments (4)

So I have not written the last couple nights about my shots (or anything else, for that matter!) because I have been preoccupied with devouring Harry Potter and the Deathly Hallows. I am now finished with it - none too soon, I might add - and am thus ready to get back to actually doing school work. I won't give away any spoilers, but I will say I enjoyed the read. I don't know that it's Rowling's best effort, necessarily, but I'm no literary scholar so take that with whatever grain of salt you need to. (Case in point: I used the non-word "idiotness" earlier today... :-P)

So, the Copaxone: to answer a few comments, I've not yet tried the injection after heating the area... the ice has worked so brilliantly I'm afraid to mess with a good thing. Seriously: my shot on Saturday had a small bit of stinging immediately after the injection but nowhere near as painful as Thursday's or Friday's shots, and it faded fairly quickly. (My right leg did, at one point, ache a bit but this was an altogether different sensation from anything I've felt before or since.)

Yesterday's injection in my left arm hardly came with any site-reactions at all. The small mosquito-bite-like welts appeared both days but they went away again quickly and the "bee sting" sensation was minimal. The only real semblance of a reaction is a small lump with a slightly tender area - as if I've bruised myself - around the injection site. But looking at it, there is no bruising or any other indication that I've had anything done at all.

I need to take a shower this evening before heading to bed though, so I'll give it a try in my right arm - just to see what happens - and will report back on my "experiment." (How cool that I get to be a guinea pig in my own experiment! Heh.)

But all in all? Things on the medication front are good. If this is the extent of my body's reactions to the Copaxone, maybe I'll be ok on it to the extent it might have time to do what it's supposed to do. Obviously, I can't know whether things will get better or worse or if any other symptoms might show up (like nausea or depression) so it's still a bit of a waiting game, but the depression seems to be lifting and on the whole, I've been pleasantly surprised and am feeling hopeful.

Continue reading "Pincushion Updates" »

Posted by Zee at 06:23 PM | Permalink | Comments (3)

So. Day two. I just gave myself the injection (again, painless) in the top of my left leg, and I'm sitting here watching the mosquito-bite-like welts form on my leg.

Yesterday, you'll remember, I gave myself my Copaxone in my belly, with no icing before or immediately after the injection. And while the injection itself didn't hurt, it stung like a mofo shortly after the injection was complete. And it continued to sting for quite a while - though the worst of it was a couple minutes post-injection.

Today, being the rebel that I am, I completely disregarded nurse lady's suggestion that I warm up the area or take a shower first (after all, does SHE have MS? Has SHE taken this stuff? NO!) and went with Nurse LindaD's suggestion that I freeze the everlovin' daylights out of my flesh before injection.

And guess what? The sting was nowhere NEAR as bad as it was yesterday. The stinging didn't last as long, nor was it as painful. Oddly, there are more mosquito-welts today than yesterday (3 or 4 dime-sized welts today versus 1 pea-sized welt yesterday) and the "rash" has also appeared. Yesterday I also got a bit of an anxiety reaction after the injection, but today I didn't feel that at all.

Tomorrow I shall try warming the area, just for shits and giggles, to see what kind of response my body gives and whether said response is better or worse than tonight's. Actually, I'm pleasantly surprised by the general ease with which I have done tonight's injection. What I'm curious about is how the different areas of my body will react and whether the reaction will be more or less "stingy" depending upon location... I assume so.

Still, if this is the extent of the reaction I get, the Copaxone shouldn't be a problem for me, considering that yesterday's shot is mostly just a memory at this point. I could feel it this morning a bit, and if I pushed on the area where I'd done the injection I could tell I'd had something done there. Generally, though, it was not too bad for most of today and now I can hardly find where I did yesterday's shot.

The nurse lady did say my reactions could get worse, if anything, so I'm going to reserve judgment for the moment and just hope for the best. And now I'm off to bed to see if I can catch up on the sleep I seem to be missing.

Posted by Zee at 10:17 PM | Permalink | Comments (3)

So the nurse lady came today to show me how to give myself my first Copaxone injection. And all in all, it was generally uneventful.

I mean, except for Rennie leaving a huge puddle on the floor by the door as nurse lady walked in.

Self: Oh isn't that lovely! Watch the pee! Let me just clean that up! One moment! Have a seat!

Nurse lady: rolls eyes and steps around puddle...

Then she (Rennie, not the nurse) started running around and jumping on the nurse lady's white pants and generally behaving like your standard loon. I stuck her in the bedroom and closed the door, thus prompting her to begin barking like aforementioned loon.

The injection itself was painless - it's subcutaneous, so the needle is tiny and very short. And using the auto-injector thingy makes it a piece of cake. I was pretty nervous at first, because the thing is spring-loaded and releases fast, but it really doesn't hurt going in.

What hurts is afterwards. I, obviously, don't have enough experience with the Copaxone to know how it will feel in all injection sites, but in my belly, it started to sting and burn about 30 seconds after injecting the medication. And then a minute after that it really started to burn... and it was varying degrees of stingy/burny/ouchy-ouchy for about 15-20 minutes before it finally calmed down and the rash showed up and the itching started. Add in the slight shortness of breath and the whole experience was just.... well, it was an experience.

Others have said the stinging feels like a bee sting - I haven't had one of those since I was five (knock on wood!) so I don't remember at all what the sting felt like (though I clearly remember the resulting swollen foot!), but if it feels anything like this I'm glad I haven't had one in 25 years! Administering this bee sting injection every day is going to be FUN. I can tell. :-P

Three hours after the fact and the injection site is tender to the touch, but there's (currently) no welt, rash or any other indication (except a tiny red dot where the needle went in) that I did anything earlier. I'm keeping my fingers crossed that this is the extent of the reaction, but the nurse said that the body starts to build up anti-bodies to the medication so the site reactions can get worse over time... so I'm just going to wait and see.

I've not done a lot of research on the Copaxone side effects, but I'm going to try to figure out a way to lessen the stinging. Some folks have said to ice before and after; the nurse today said that icing closes up the capilaries, which keeps the medication close to the surface of the skin - hence making the sting worse. She suggested taking a shower to open up the capilaries before giving myself the injection. So I suppose I'll try both and see what happens. (Anyone have suggestions beyond these two? I'm open to all ideas!)

Anyway, that's the latest and greatest from me. A friend of mine got me sucked into Facebook yesterday. My productivity took a huge nosedive at that point. Sigh...

And speaking of productivity - I need to get going on some school work. The last Harry Potter book arrives Saturday and I intend to be finished with ALL the week's homework so I can start reading it!!

Posted by Zee at 08:17 PM | Permalink | Comments (4)

Yeah... I don't have much to say tonight. But as it's been... (checks calendar do-hickey on home page) ... 3 days since I last wrote I figured I'd update the site with the latest and greatest from my world.

Lesseee......
Ummm.....

Oh yeah! Copaxone!

Saturday I swung by my post office box and in said PO Box was my Copaxone auto-jector thingy and the really nifty blue tote bag with Copaxone information in it. This morning, the UPS man brought me an extremely large box that contained a sharps container and styrofoam cooler. Said cooler contained 6 freezer packs plus a bunch of bubble wrap, plus one very small box of Copaxone.

Continue reading "Umm.... how 'bout them Red Sox?" »

Posted by Zee at 10:12 PM | Permalink | Comments (4)

Thankfully it's cooler down here in Portland today, or I'd really be in a bad mood! It was one of those days at work where it felt like we were being picked at from every side and, even though I'd done as good a job as I could, I still ended the day feeling like I completely suck at my job... And I don't, but I walked away feeling like I do, which is just about as bad. The worst part of all this is that the negative parts of my day always seem to overshadow the positive and there were some good parts to my day.

Anyway, so I guess I just have to wait for this "unsettled" feeling to go away and for me to stop obsessing over that which I cannot change. I think I'm going to do some yoga and then play a little piano and see how I feel after that. Maybe a bit of yelling at the top of my lungs will help too.

Meanwhile, I didn't do my homework yesterday because I just didn't feel like it. I think I've got "senioritis" or something. Or maybe I'm just resistant to the idea of answering a question I've already answered in three other classes already this year. (This fact does, however, mean I just need to track down the answers I wrote previously and spiff them up a bit!)

In other news...

The Copaxone people called a little bit ago to tell me about when and how my Copaxone will arrive. My doctor did indeed order the special, handy-dandy autoinjector gadget thingamajiggy, which should arrive in the mail this week. And, they're also sending me some kind of big blue bag that has "literature" or something in it, and then my mail-in pharmacy will be contacting me in the next day or so about delivering the actual medication itself. (Wow, did you catch that big, long run-on sentence? :) Then they'll have a nurse come to my home and train me to inject myself. And then my head will explode and it won't matter which drug I'm taking!

Oh wait. Nevermind. (Have I mentioned recently how much Multiple Sclerosis sucks?? The sad part is, my case isn't anywhere near as bad as it could be.)

Anyway, so that is about all that's going on with me. A whole lotta "not much."

Posted by Zee at 04:07 PM | Permalink

So I have, finally, reached a decision about The Medication Question. Copaxone has come out ahead. Why, you ask?

Well, it all came down to depression.

After my doctor diagnosed the depression last month and bumped up my anti-depressant dose I started to feel a bit better. I still feel a bit better, but I also still feel a bit down, a bit uninterested in the day-to-day happenings of my life and a general lack of interest in anything I used to find interesting. My energy level is low and I'm happier, most of the time, to spend the entire weekend in bed than I am in meeting up with others of the human race.

Now, I could go see my shrink and bump up my anti-depressants again, or I could try a different disease-modifying medication, one that does not typically cause or worsen depression in patients.

Since my depression seemed very stable and manageable on the doses I was at before I started the Avonex, it seems to make a certain amount of sense that the Avonex might be the cause of the increased malaise. Additionally, my ever-increasing aversion to giving myself the weekly intra-muscular injection (which involves jamming a big, long needle into my thigh) seems to indicate the need for a change of some kind.

Yes, the Copaxone has injection site reactions but, as I understand it, those are mitigable. Yeah, it sucks that I have to give myself an injection every day, but the fact that this is a subcutaneous injection and has an auto-injector makes that little pain in the rump a bit more bearable. The kicker is that the Copaxone doesn't - in most cases - cause depression or flu-like symptoms. So I'm going to give it a try. If nothing else, I will have more information about my body and how it reacts to these lovely chemicals.

The call has been made to mi médico so updates will surely be forthcoming once I've heard back.

Posted by Zee at 11:46 AM | Permalink | Comments (3)

I'm too tired to write much now, because I've just returned from the Oregon coast, where it was clear and sunny and beautiful but thankfully not too warm. In short, it was a perfect day to go to the ocean and I have many tales to regale you all with as well as pictures of everyone's favorite Yorkshire Terrier.

Here's a little teaser:

However, as today is the 1-year anniversary of my Multiple Sclerosis diagnosis, I felt I must mark it in some way. I have written at length about my own experience during my first year after being diagnosed with this disease so I'm not going to write any more about that lest I lose all my audience.

Instead, I want to point ya'll to this series of videos on YouTube about Jacqueline Du Pre, the fabulously gifted and famous British cellist who was diagnosed with Multiple Sclerosis at age 28 and died 14 years later in 1987 at the age of 42. I was reminded of this brilliant woman on Tuesday when I had dinner with my friend Rob (a cellist, naturally) and she's been on my mind.

This documentary/video is in about 8 parts on YouTube, but the first part is below, in the extended entry. The Elgar concerto is exquisite and despite the toll MS ultimately took on Du Pre, what she gave us with this concerto - and many other works - is nothing short of genius. In light of this, I continue to hope and pray for continued research leading to a cure.

Continue reading "Happy (?) Anniversary" »

Posted by Zee at 08:00 PM | Permalink | Comments (2)

Never let it be said that public television - with all its rhyming and word play and whatnot - didn't rub off on me!!

Anyhoo...

I am feeling significantly better today. It's amazing how just knowing what the problem is can help turn it into a solution. I'm no closer to a decision on the Medication Question than I was on Monday, however... Given the sub-cutaneous nature of Copaxone injections (plus the nifty auto-injector!) I'm leaning towards giving it a try but I'm leary of the daily injections and the injection-site reactions. Still, I just hate the damned Avonex.

Seems like 6 of one, half-dozen of the other at this point and I guess I have to decide whether to go with the devil I know or try the devil I don't. (As an old friend used to say, "the lesser of two evils is still evil." and such is the case here, methinks.)

Anyway, so that's procrastination example #1.

Continue reading "Procrastination Station" »

Posted by Zee at 11:42 AM | Permalink | Comments (4)

Well, it's been kind of a trying day. MRI was yesterday; neuro appointment was this morning. When I got to the appointment, I had to wait the requisite 60 minutes or so, because my neuro is always running behind. And the area of the waiting room I sat down in reeked of cigarette smoke. Lovely. So I commenced reading my Real Simple magazine (from April, because I keep up with my womens magazines!) and ended up across the aisle from a woman whose husband was sprawled in his dirty overalls on the couch snoring. Seriously, the guy was SNORING. His wife swatted him periodically with her magazine and told him to stop sleeping but until the doctor opened the door and he had to get up he continued to snore.

So when it was my turn, the doc and I went through the usual rigamarole with me describing my symptoms, him talking me through stuff and then he pulled up the results of yesterday's MRI. Looking at pictures of the inside of my brain is just fascinating! Turns out I really do have one, which is good news.

And not only do I have a brain, but the scan looks very good. The one lesion they found last spring was still there and still the same size. There was one newish, smaller spot, the neuro said. However, he said he wasn't sure the "new" spot was truly new. There's the potential that it could have been there last year but because of the way the scans turned out it's just more visible in this particular set of scans. Could have been there before, might be new. Hard to say.

The bottom line is, my brain looks pretty good. The neurological exam also looked fairly ok too. Apparently, things have changed "minimally" since he saw me in April. On the whole, my disease is apparently fairly stable. And that, my friends, is good news.

However, I can't help but feel a bit irritated by being told that things "haven't changed" when I can tell that they have. I suppose there's little I can do about that. Actually, the whole appointment felt a bit contentious - to the point that I started wondering what other neurologists were in the Portland area and whether they would be a little more understanding with me.

Anyway, the bad news is that he thinks I am "severely depressed." It hadn't even occurred to me, but after I left the appointment and thought more about it, it became clear that he was probably right. My main symptom lately - besides the residual sensitivity and numbness issues - has been fatigue. Mind-blowing, bon