Another benefit of having a care partner is that if, for whatever reason, my shot hurts some weeks, I won't flinch with a needle in my hand. Don't know why, but yesterday's shot, although it went very smoothly and Audrie did a great job, was pretty painful. I guess I picked a spot right on top of a nerve or something. All of our cats have demonstrated an uncanny ability to find a recent injection site and walk right on it. The grey cat proved her insight yesterday and this morning, repeatedly.
Side effects were in line with the usual today. I went over to a friend's for a few hours and spent some low-key time playing Dungeons and Dragons, for what I expect is the last time for at least a few months. It's now four days until the baby is due. We found out that I probably had MS four days after we found out Audrie was pregnant, so it feels like some kind of symmetric milestone. It's been quite a journey so far, but mostly a good one. I look forward to the many new experiences that await me in the coming year.
Saturday, December 30, 2006
Another benefit of having a care partner is that if, for whatever reason, my shot hurts some weeks, I won't flinch with a needle in my hand. Don't know why, but yesterday's shot, although it went very smoothly and Audrie did a great job, was pretty painful. I guess I picked a spot right on top of a nerve or something. All of our cats have demonstrated an uncanny ability to find a recent injection site and walk right on it. The grey cat proved her insight yesterday and this morning, repeatedly.
Friday, December 22, 2006
Here's another great photo from Flickr. Our camera's packed to go to the hospital (baby's due in 12 days!), so I'm especially glad of other peoples' pictures right now!
I've had a ton of thoughts the last few weeks that I haven't had time to catch here on the blog. Like the proverbial fish, I'm sure they are grander in my imagination than they would have been if concretely realized, but I still regret not posting them. It's helpful to come back and look at my own thoughts after enough time has passed that they seem like someone else's.
Even though I do not recommend that you get MS, I believe that in my case, the last few months have helped me prepare for my son's arrival. By shaking me loose from my assumptions about my life, my diagnosis has given me a broader perspective. I think I'm more flexible now than I was this time last year. I feel gentler, and more ready to engage with this new person who's coming.
Last Saturday, we got up early (for a Stephan post-shot day) and went to a 6-hour birthing class that started at 9 AM. For the first couple of hours, I was in enough of an altered state to feel kind of distracted and spacey, but I was still able to pay attention to the class. Then I took some Tylenol and my side effects basically disappeared; the rest of the day felt almost like any other day.
I noticed at last week's shot that I could feel a deep muscle in my leg tensing up. The surface muscles are pretty well under my conscious control (although they still tighten up right before the injection), but this was a muscle that I never normally feel. I hope to gain a better and better awareness of my own structure, and eventually to be able to feel and relax those deeper muscles. I say "deep", but it's still only an inch under the skin. And you know what? I don't need to get accustomed to needles that are any longer than that. I'll be perfectly satisfied with an awareness limited to one and a quarter inches into the top of my thigh, thank you!
I made a point of conditioning a relaxation response this last week. Whenever I thought of it, I would imagine myself doing my injection on Friday night, and I would imagine being relaxed. I hope to make my first reaction to the sight of a needle one of relaxation, not one of tension. Tonight was promising; I'll keep it up and let you know how it goes.
Our family has been giving charitable donations as gifts lately. Last year at Christmas, we gave each other gifts of donations to Heifer International, domestic abuse shelters, education funds, and that sort of thing. Each year, I imagine that our family's focus will change a little—for example, this year we gave a little more to breast cancer research and wildlife causes—but the main point remains. I'm trying to decide what to ask Audrie for. (She wants a donation to Hawkwatch.) One obvious choice for me is a donation to MS research; but when I think about all the other people with MS, and I think about my own uncertain future, I feel very sad. I might not be quite ready for that gift yet. This year, I'll probably ask for something happier.
Posted by Stephan Terre at 9:07 PM
Saturday, December 02, 2006
Mysteriously, the little control that lets me upload photos so nicely has disappeared today. Oh well: welcome to today's superchic retro-tastic TEXT ONLY blog posting!
"Why no post last week?" I hear you ask. Well, I'll tell ya. I've been busy most evenings painting the laundry room. It's been fun to enjoy using my body to do good work. MS or no, at some point in our lives, we lose the faculties of our bodies (remember, if you've been raised from the dead as a zombie, it's not really *your* body any more). Each chance I get to feel the stretch of my limbs and make something with my hands is a priceless gift.
I got to share last week's shot with my two brothers. I was hoping to show them how easy it has become, but managed to hit a blood vessel of some sort and leaked a lot more than usual of my red gold, vampire tea; blood, that is. Not enough to make anyone faint, but enough to give the lie to my implicit message that these injections are no different from taking a pill. My Avonex side effects were also pretty solid last week, though still much reduced from the first month!
As you might expect, with no one but my lovely wife watching, last night's shot produced not even a single drop of blood, and today's side effects are pretty much the lamest ever. I guess the Spirit of Flu-Like Symptoms is too busy this time of year visiting people who actually HAVE the flu to get around to my house every week. Not that I feel rejected, mind you. If it doesn't want to call, that's fine. No sweat off my teeth. Nope. I'm actually happier this way. Really.
Posted by Stephan Terre at 10:38 PM
Saturday, November 18, 2006
Yesterday's shot was a mixed bag. I decided to try for an earlier injection (5 PM instead of 8 PM) to see if doing so would help me recover faster on Saturday. The answer appears to be no: I still felt the side effects all day today, plus part of last night. Looks like two nights' sleep is the real answer. Getting set up for the shot was no big deal. We were moving smoothly through the process until the needle fell on the floor! It was no longer sterile, and we couldn't use it. Luckily, Biogen-Idec had sent me out a 5-pack of spare needles a couple of months ago, so I came out into the great room to find them, holding my alcohol pad to my leg so I wouldn't forget the site I had picked for my injection. I got back into the bedroom with the needles, we pulled one out and affixed it to the syringe, and all was well. But both of us were rattled by the interruption in our routine, so Audrie was less comfortable giving the shot, and I was less comfortable receiving it.
I did remember to hypnotize myself this time, suggesting that I would be able to remain very relaxed during the shot. Even though the shot hurt a little more than usual, I did feel more relaxed, and I think I'll keep up the practice in the future.
Today we went to an Infant CPR class (only offered on Saturdays). Even though it wasn't much physical work, it tired me out enough that I came home and crashed on the big comfy chair for an hour or so. Tonight I still feel kind of overwhelmed.
Overall, a mixed bag. But I'm coming to realize that I'm actually afflicted with a second incurable brain disease in addition to MS. It's called Optimism. I read news articles and blog postings several times a week about MS, and I know that, unless the therapies improve dramatically, I can expect a worsening in my own condition, just like everyone else. I know that, even if I stay as symptom-free as I am now, I will still be unable to interact fully with my little boy on Friday nights & Saturdays. I could list the negatives and the worries all day long, if I wanted, but they do not diminish my feelings of hope. One day at a time, one moment at a time, I have the unparalleled opportunity to live this wonderful life of mine, and I could ask for nothing better.
Posted by Stephan Terre at 11:01 PM
Saturday, November 11, 2006
Today was a good day. Slept till 10:45, though it was fitful. I dreamt a lot about the baby (generally good dreams), but I think I was just achy enough to keep me from sleeping deeply. But then I felt pretty good this morning and all day. I even managed to replace the fridge water filter and bring in presents from Audrie's baby shower, neither of which I could have done on a Saturday just two months ago. As long as no major relapses hit me, as long as I keep tolerating the medicine, I ought to do just fine. Every day is a gift.
That's all from me. If you want to get sucked into the Web a while longer, go look at the interesting photos on Flickr.
Posted by Stephan Terre at 10:43 PM
Thursday, November 09, 2006
Had an appointment with Dr. Glynn, the neurologist, today. He checked my reflexes, made me do tests like alternately touch my index finger first to my nose, then to his outstretched finger (but he cheated and kept moving his hand), and pronounced me in fine shape. I won't see him again for another six months, barring a flare-up. Excellent.
From the neurologist's, we went to a nearby clinic where Audrie got a flu shot. We asked the staff at Dr. Glynn's office if they knew where the clinic was, but they did not. It turned out to be in the building next door. Then, while sitting in the waiting room at the clinic, we overheard a man ask the staff there where Dr. Glynn's office was—and the clinic staff didn't know! So we gave him directions and he went on his way. It seemed strange to us at first that the two offices could be so close, yet not know each where the other was. Then I realized that I don't know who's staffed in the building next to mine, and it didn't seem as strange any more.
In other exciting news, today when I went to pick up my Avonex at Walgreens, the pharmacist actually asked me for my ID! Brilliant. On the other hand, there was a message from Walgreens waiting on my phone when I got home; maybe tomorrow I'll find out that they think they didn't send me my medicine after all, or something. Always an adventure.
I decided that, since I don't have enough of my own photos to populate this blog as well as my regular one, I will simply link to other interesting photos on the Web. Not being much of a researcher, I am likely to post photos that you could find yourself with the most trivial search imaginable, but perhaps they will increase your viewing pleasure; if so, I am happy.
Posted by Stephan Terre at 9:25 PM
Saturday, November 04, 2006
I forgot to mention another idea I had yesterday, which was to use hypnosis to help manage anxiety, pain, or side effects related to Avonex. I took a couple of self-hypnosis classes 8 years ago or so, and I've also read enough about it to know that it can be used for anaesthesia, at least. This week, I didn't think of it until too late, but maybe sometime I'll try hypnotizing myself before my injection to see if it helps me stay relaxed.
I wonder what mechanism this might actually activate? Suppose that I tried to use it to minimize the side effects I felt the day after my shot. Maybe one way for my body to make this happen would be to develop neutralizing antibodies against interferon beta. Then my side effects might be mitigated, but my primary effects would be inhibited! I think pre-injection relaxation ought to be a safe bet, though.
So far today, I've felt pretty good, possibly the best I've felt on a Saturday since I started taking Avonex. It's a hopeful sign. I'm still a little achy here at the end of the day, but I'm sure I'll feel right as rain again tomorrow. And meanwhile, today has been quite bearable.
I found this post's photo on Flickr. Lots of good stuff there if you're looking for fun photos.
Posted by Stephan Terre at 8:34 PM
Friday, November 03, 2006
My friend B— told me how to put pictures on Blogger. I can't put too many here, or I'll steal all the fodder for my regular blog, but maybe I'll put one here every now and then. This particular photo was taken on a Saturday afternoon. As you can see, I am able to toddle around just fine!
This week, I finally got around to returning a call from the Avonex Therapy Support program that I had received 10 days previously. This is a program run by Biogen Idec, the makers of Avonex, which basically involves someone touching base with me every 6 weeks to see how I'm doing and offer encouragement. I spoke with a pleasant British woman named Katherine who was very empathetic and helpful. She was impressed with Audrie for all her help, as well she should be. She gave me lots of good advice. I mentioned how I tense up a little bit before each injection, even though the pain is much less than, say, stubbing my toe. She pointed out that one doesn't set out to stub one's toe on purpose, though, so there's no component of anticipation. I also mentioned my concern that my body might eventually put together Friday's shots with Saturday's aches, and start resisting the injections in some way. In addition to seconding my plan to use a positive framing as a ward against this possibility, Katherine also said that this kind of thing does happen to some people, and the therapy support personnel have lots of techniques for addressing it. That helped me feel quite a bit better. All in all, I was on the phone for about 40 minutes with her.
When I went home that evening, I also finally had time to call D—'s friend Bill. Bill has been suffering from a variety of hard-to-pin-down symptoms for several years now, and believes that he has a primary progressive form of MS. Unfortunately, he has been struggling with the unwillingness of the VA doctors to confirm any diagnosis. A diagnosis of MS is necessarily an educated guess, requiring a certain leap of faith and ability to commit to an opinion. Bill's feeling is that the VA doctors are concerned about claims against the system, and disconnected from their patients, to the extent that they will not make a diagnosis for something that doesn't have a clear and unambiguous marker. He also has enough exposure to toxins, radiation, and the like, as well as injuries, that I'm sure it's hard to determine a cause for his symptoms. Anyway, Bill just wanted to talk to me because I am the only person he knows who's actually been diagnosed with MS. I told him about the way it had presented itself to me, my experience with my doctor, and my experience with Avonex. I felt glad to be able to offer some small measure of help, and humbled by his experience. I am truly fortunate to have gotten hooked up with the caring doctors that I have. I can understand why so many people with MS (and diabetes, and cancer, and everything else that might afflict us) are so motivated to reach out and help others who share their disease.
Today I decided to do my shot a little bit earlier than usual. If I can get home from work early on Fridays, I think administering the medicine earlier in the evening might help me recover earlier on Saturday. It might be that I just need two full sleep cycles to feel 100% again, but then again, maybe I don't. I'll experiment!
Posted by Stephan Terre at 8:03 PM
Saturday, October 28, 2006
Yesterday, Audrie gave me my shot in front of her second audience, this one being my dad & stepmom. She did great, as always. Today I felt the usual side effects, with some decrease from last week (more on that later). I decided to try taking a shower, which was a good idea in that then I was clean, but a bad idea in that it kept me standing longer than I probably ought to have. I started feeling pretty tired afterwards, and took a nap for a few hours. I feel much more alert now, thanks. I helped a little bit with cleaning out the laundry room (our painting project for tomorrow), then sat down to rest some more. Overall, I'm a little achy and sore, but will feel just fine by tomorrow.
My impression of my diminishing side effects today was like sea level slowly sinking. When I first started taking Avonex, my whole body was engaged in the side effects. If you think of the side effects as sea level, then what you see is water to the horizon. With each passing week, the water has been receding; and in so doing, it has begun to reveal islands. Now that I don't ache everywhere, the places where I do ache grab my attention more. Because I feel better, paradoxically my account of myself to family and friends makes it sound like I almost feel worse! By the end of Saturday, though, the aches I do feel are almost pleasant, like the soreness that comes after along day of rewarding physical work. Hey, maybe I should try to market that. "Feel pleasantly achy without ever leaving the couch! One simple shot lasts a full 12 hours!"
I wonder whether I will come to dread the Friday shot for Saturday's aches. So far, I don't feel any sign of this happening. But I'm worried that maybe my body will put two and two together and start getting tense on Fridays. Time will tell, I suppose; and I bet that my own interpretation of and storytelling about my symptoms will help to keep everything framed positively.
Posted by Stephan Terre at 7:51 PM
Tuesday, October 24, 2006
L— suggested some useful techniques for dealing with injections, particularly if they're painful: listen to music that engages your mind (for her, it's best if she can sing along), ice the area, and, in general, distract yourself. Good ideas all. I am happy to find that I'm moving in the opposite direction, believe it or not. Since my shot is not actually painful, except to the extent that I anticipate it and tense up beforehand, I am finding that the more I can experience the true feeling of the injection, the better off I am. This last week was no exception.
My excellent dad was here to see first-hand what the side effects are like. It's one thing to hear that your only son is doing fine on Saturdays, but quite another matter to see it firsthand. Side effects once again seem diminished over the previous week. Pretty soon I won't have anything interesting to say, and I will have to resort to a weekly fashion report. There's a lot wrong with the fashion industry, but those models have a really strong presence when they get on the runway. That's not a trivial feat.
The distraction advice came in quite handy when I got a flu shot, though. I found that I did not want to look at that one, even though normally I always watch injections, and also watch when I'm having blood drawn. My poor wife hustled upstairs with me to the flu shot clinic, only to find out that they wouldn't give it to a pregnant or breast-feeding woman. I stood in line a while longer, having checked the box that said I had an Active Neurological Disorder, wondering if I would also be sent home, but they had no concerns about MS and flu shots. My Walgreens information packet had mentioned this explicitly, too.
I had a call late last week from Gwen at Biogen Idec, the makers of Avonex, following up on the Therapy Support Program. Somehow, I haven't found the time to call back yet, but hopefully tomorrow.
The cats all think it's pretty cool that I'm home and sitting near them, but they clearly would prefer either treats or playtime with the fishing rod toy, so I shall sign off for now. I am pleased to sign off once more in good health and good spirits. Only one week till Halloween!
Posted by Stephan Terre at 9:34 PM
Sunday, October 15, 2006
This week's shot went well. Side effects from the Avonex were less than last week, putting to rest all my namby-pamby fears about temperature and airplanes. I felt pretty good most of the day after (Saturday), with just minor aches and weakness. I started tiring out in the late afternoon, but somewhere around 9 or 10 PM, I realized that suddenly I felt totally fine. I'm feeling hopeful that, by the time the baby comes in early January (assuming he's on time), I'll be able to help out on Saturdays nearly as much as on any other day.
I think I've said it before, but Walgreen's Specialty Pharmacy just does not have the same high level of competence that Avonex Direct Delivery does. I cannot use the latter because of restrictions on my insurance policy, but I did deal with them for my very first shipment. Walgreen's seems to try to hire average or above-average people and use standardized policies to get good results, whereas Avonex Direct Delivery seems to hire excellent people and also use standardized policies to improve their performance.
A couple of weeks ago now, I had received a call from Walgreen's arranging for my next shipment of Avonex. I was quite pleased until I came home on Friday and found another message from Walgreen's asking me to set up my next shipment. I called them back, and left a message per the instructions on the answering machine, but have not yet received a return call. I'll try again tomorrow (Monday) and see if I get through to a person, but currently, I'm not feeling a high degree of confidence that everything's going to quite come together. Given some of my friends' stories about the regular Walgreen's pharmacies, I will not be surprised if this becomes a regular issue. I'll post later this week and let you know how it turns out.
Posted by Stephan Terre at 8:48 PM
Friday, October 13, 2006
I was going to title this entry Omegatron and the Council of Time, but then I didn't have a follow-up, so maybe I'll save that for another post.
I had my yearly physical today with my internist. He advised me to be extra vigilant of all my many moles, since I'm on an immune-modifying drug, and my normal automatic surveillance mechanisms are not as active as they could be. Sounds like something from a spy thriller. He also encouraged me not to get the bird flu. (Perhaps the bird flu will give new currency to the old rhyme about Enza?)
My neurologist had sent over both my MRI results and a letter detailing his diagnosis, and I got to read both. I had intended to get the MRI result myself some time ago at a visit to the neurologist, but had gotten sidetracked with other questions and forgot. There is a plaque (scar) about 6 mm in diameter in the parietal region of my brain, but nothing directly in the area that would control my eyeball muscles. The implication seems to be that the mechanism for my two episodes (both visual in nature) was a slow-down of the impulses coming from the parietal region to the eyeball-movers. The good news about this is that the brain is apparently better at routing around damage to the more central parietal area than it is at recovering from damage to the more peripheral occipital area.
Tonight's shot went fine, no thanks to Omegatron and his "really important" meeting. I seem to be learning to feel the side effects earlier, which I like to attribute to an ever-subtler discriminating awareness, but which may be nothing more than imagination. I may also be mistaking some Tylenol-induced feeling for early interferon side effects. One day I'll do an experiment where I don't take Tylenol ahead of time, and see how I feel. But not just yet.
Posted by Stephan Terre at 9:20 PM
Sunday, October 08, 2006
We're back in Tucson after a delightful short trip for Audrie's Utah baby shower (there's another one planned for here in Tucson). On the way back, the security team was interested in my little package of Avonex, but after I showed them the package, they let me through with still less fuss than Audrie's purse occasioned.
We did last week's shot at Audrie's grandmother's house. She is diabetic, so already had a handy sharps container. The way Avonex is delivered is as individual pre-filled syringes in little kits. Each kit has the pre-filled syringe and a needle; then the box as a whole also contains alcohol wipes, gauze pads, and adhesive bandages for each injection kit. So I wasn't able to open up the kits and show security what they contained, but I figure that's what the X-ray machine is for. They were not concerned with my frozen gel pack. I was glad, but a little surprised. If you're worried about lipstick and shampoo, why not frozen bags? Maybe I don't understand enough about explosives to know what I'm talking about.
The Utah shot went fine. Side effects were as usual: slightly diminished from the previous week. I can do a little bit on Saturday night, but I don't really feel right again until Sunday.
This week, Audrie administered my shot, and did a great job. I still get a little tense right before the shot. When Audrie did this one, I looked away so that I couldn't tell when it was going in, and as a result, I was able to feel the actual feeling of the needle much better. It was really nothing; the majority of any discomfort I feel comes from the story I tell myself. I hope to get better and better at perceiving the actual physical experience instead of substituting imagined experience.
Yesterday I slept till noon, except for being woken up a couple of times by stupid telemarketers. The first few hours of the afternoon, I felt quite good: just a little weak, and hardly achy at all. The part of my mind that worries about such things suggested that maybe I had let the medicine get too warm on the trips back and forth to Utah, and so I was having lesser side effects because it was not working as well as it should. Well, maybe so, but there's no point in worrying about it. By early evening, I was feeling stronger aches, but still, I believe, less than the previous week. Whatever else may be true, I think it really helps to get a ton of sleep on the night of my injection.
Tai Chi has been demonstrated to help with MS. My teacher's classes are on Saturday morning, which is pretty much the worst time for me right now. I try to do at least part of the form before my shot, so that I'm more relaxed, but, as usual, I never seem to get around to doing Tai Chi during the week. I suppose it's no different than the other exercise that I don't do during the week, but it bugs me. In a few months, I'll be getting plenty of exercise from carrying the baby around, so I guess I shouldn't sweat it too much.
A beautiful sunset is beginning outside, and I am grateful to be here to see it. Here's to another week of health!
Posted by Stephan Terre at 5:42 PM
Wednesday, September 27, 2006
We went to a seminar yesterday (Tuesday, 9-26-2006) about MS, given by an MS specialist from Phoenix. It was sponsored by Biogen Idec, the makers of Avonex, but it appeared to be entirely unbiased; the doctor had good things to say about all the therapies on the market. Among other things, we learned that there is no known risk of Avonex causing any problems with us having another child (if we want to). That was nice to hear.
The side effects from my last shot were once again somewhat less than the previous week. I even managed to open a new jar of spaghetti sauce, though it was a bit of a struggle. Audrie wasn't home at the time I was making lunch. I had forgotten that I was going to have to open a new jar, but went ahead and gave it a try: success! I felt like Popeye, or maybe Conan.
I've now successfully traveled with my medicine, too. We flew up to Utah this morning with two syringes of Avonex in a little styrofoam cooler, and encountered no problems. I didn't think of a good way to measure the temperature inside the cooler until just now, when I remembered that you can get dual-probe thermometers which track maximum and minimum temperatures for each probe. I ought to deploy one of those for my next trip, so that I can set my mind more at ease. I only hope it doesn't look like a bomb trigger or something to the X-Ray. This Friday, I'll do my injection at Audrie's grandmother's house. It's just adventure after adventure for this hep cat!
Posted by Stephan Terre at 8:44 PM
Friday, September 22, 2006
Biogen Idec sent me another little insert for my Avonex binder today. Every so often, I get an unexpected package in a padded mailer containing a letter, a 10-20 page booklet, and a medicine information pamphlet printed on Bible-thin paper. The letter usually says something nice about how Biogen Idec (the makers of Avonex) are psyched that I'm taking their product, reminds me of the various support resources they offer, and describing the booklet.
Today's booklet is titled Our Journey is MS (Letters from people who have been there). It has short letters from 8 different people, all of whom have been taking Avonex since at least 2001, describing their experiences and offering encouragement. It also talks about the mentor program that's available. The booklet is quite well done, and I appreciate getting it. I felt motivated after reading it. I also felt sad, as I always do when I read stories of people with MS. Those poor people.
There were a few things I particularly liked, and want to share. Faith described Avonex, along with its needle, as her weapon of choice. I love the idea of that needle as a weapon, like a sword. I am a bit suspicious of focusing on a "fight" metaphor, however. MS is not a thing. Fighting MS sounds a little too much like fighting a "war on drugs". There's no little alphabet running around in my brain eating at my nerve sheaths, setting up offensives or trying to get me when I'm not looking. An image that appeals to me more is of the needle as a magician's wand, and of Avonex as a healing elixir. But without Faith's analogy, I wouldn't have thought of my own.
Several people talked about how MS actually has made a positive change in their life. Like me, they have found that the disease and its treatment brings all of life into high relief, making it easy to be grateful for every day lived, every step walked, everything this wonderful body of mine can do, and everything the world offers.
John said, "Remember, you may have multiple sclerosis, but it certainly does not have you!" I take his point. But, being contrary, I have to turn it around. Here's my version. I may have MS, but it also has me—and it's gonna regret that! Foolish disease, you have chosen the wrong target. Okay, so maybe I do like personifying it and fighting it :)
Jackie gave this good advice: "After I take my shot, I immediately do something nice for someone else...it's amazing how good I feel afterward." Faith suggests rewarding "your weekly persistence with a small treat". Maybe I'll try doing both. I got myself some cookies tonight, and gave Audrie a pretty card to thank her for all her help and support.
Audrie administered my shot today, wielding the needle like a veteran. I remembered my plan to look for places on my leg with no visible blood vessels near the skin, and hardly bled at all. I did feel a little anxious just beforehand. I took a deep breath, looking away, and held up a finger for Audrie to pause. Then I took a second deep breath, meaning to signal Audrie to wait just a little longer; but she took my obscure second gesture as a request to proceed, and so, like the best nurse in the world, injected me while my attention was elsewhere.
It's funny how I get nervous. The shots hardly hurt at all—I'd say that the soreness of the twentieth push-up of the morning is more actual pain. The anxiety is clearly all a result of some story that I'm telling myself unconsciously. I think I ought to return that particular storybook to the library and check out a new one.
Posted by Stephan Terre at 8:16 PM
Sunday, September 17, 2006
This Friday was my first time doing my shot completely solo. Audrie was over at a friend's so that I could try this experiment, which went well overall. I did have a moment of comedy when I ended up washing my hands no fewer than three times: first to get ready, second to get ready again after I forgot to turn on the overhead light, and third to get ready yet again after I forgot to bring out the Avonex log book. I doubt many germs remained after that third time.
I also did the injection itself better than previous times. I remembered my clever idea about how to position the syringe so that it's easy for my left hand to grab. I was more aware of all my sensations during the injection than previously, because I was, for the most part, calmer. The only thing I forgot was my plan to survey my leg for veins ahead of time, and avoid them. It's good to have something to shoot for next week :)
I've been flirting with a cold all of last week and still this weekend. I've been taking echinacea to help forestall it. Echinacea is an immune booster, and Avonex is an immune modulator. Put them both in your body and what do you get? Sounds like a Steven Wright joke, although my laughter is a little forced. So yesterday (Saturday), I wore myself out a little—but on the other hand, I also was able to do more than at any time yet in my therapy. I also started out the day stronger than last week. I judge myself still to be improving week by week.
Posted by Stephan Terre at 4:27 PM
Saturday, September 09, 2006
Another week, another improvement. My shot didn't go as well as last week, because I tensed up at the last minute, but it was still no big deal. My side effects, on the other hand, were better than last week's.
This week I took some Tylenol PM on Friday night (a.k.a Avonex Eve) to help me sleep, because my sleep on previous Fridays has been shallow and easily interrupted. The drug did its job, and I slept quite a bit more soundly, and felt better this morning (Saturday). Unfortunately, we were awakened by several phone calls relatively early on, so I didn't get to sleep in.
Today I was still weak and achey, but Audrie noted that I looked more alert earlier in the morning than previously, and I recovered earlier in the evening as well. I was even able to leave the house for the first Saturday since I started on Avonex, and go sit at a friend's for several hours. While there, I performed amazing feats of strength such as opening twist-top bottles.
I like these enforced Quiet Saturdays. Today I sat for probably a half hour with the grey cat as she did a complete cleaning cycle, nose to tail. I just sat and watched her, enjoying her company as she enjoyed mine. I remember a lot of times like that from when I was a kid, and I treasure those memories. As an adult, I have emails to answer, household chores to do, more hobbies, and just generally more obligations, with the result that I do not naturally find myself with long spans of quiet time. Maybe as I continue to tolerate the Avonex better and better, the length of Quiet Saturday will shrink to just a few hours. I certainly won't mind feeling better, but I imagine I might fall back into the cycle of busy-busy-busy and lose some of the peace that comes of doing nothing.
And on a final note, I just wanted to say again how much I appreciate everyone's support. I keep getting regular emails, cards, and calls offering me so much encouragement and love that I truly believe myself the luckiest of men.
Posted by Stephan Terre at 10:27 PM
Thursday, September 07, 2006
Saw the neurologist today. I asked a couple of questions, got a note for air travel with Avonex (since the syringes and needles may cause a spot of trouble in airport security otherwise), and got a sense of the next few months.
First of all, when I asked the doctor what the oligoclonal bands in the most recent spinal tap results meant to him, he responded without hesitation, "M.S." So he feels sure that we have a solid diagnosis, which is good.
I asked how we'd be monitoring my liver function, which I gather you're supposed to do when you're on a drug like Avonex, and he responded that he was going to give me a lab order that day, then again in a few months. So sometime soon I'll go down to donate some fluids and get a workup of cholesterol panel, metabolic panel, and something else that I'm not remembering right now, but that contains the word "Chem" in it, so it must be scientific :) I usually get a physical every year, so I ought to have a pretty good baseline for comparison with a lot of these tests. As I understand it, drugs like this can be hard on your body, particularly on the liver, and so it's wise to keep your finger on the pulse, as it were.
Overall, it looks like "steady as she goes" is the plan. The only reason for a change would be if I start having trouble with Avonex, or if an M.S. exacerbation "breaks through" depsite the Avonex. In that case, he'd likely treat the symptoms themselves with steroids, and possibly switch me to another M.S. therapy like Betaseron, Copaxone, Rebif, or who knows what else by then (since I plan on that not happening any time soon!).
A little side benefit of frequent doctor's visits: on the way out, I asked for any recommendations about stethoscope brands, because we wanted to get one to listen to the baby's heartbeat when it becomes audible in a couple of months. In answer, he just gave us a spare stethoscope that he wasn't using! So I've been listening to everything: Audrie's and my hearts and lungs, the cats' hearts, lungs, and purrs; the computer fan; and, when I get a minute, I'll probably grab a combination lock and listen to it too.
Posted by Stephan Terre at 8:06 PM
Tuesday, September 05, 2006
The doctor's office called today and rescheduled my appointment that was supposed to be today for Thursday. It seems my doctor called in sick. Is he allowed to do that, I hear you asking? The answer, it appears, is yes—either that, or I've been had!
So tune in Thursday to find out the scoop, or possibly to find out that I'm just stringing you along and you'll have to delay again; either way, you win. YOU WIN!!! Exciting, isn't it?
Posted by Stephan Terre at 7:46 PM
Monday, September 04, 2006
This week's injection went well. I didn't even bleed at the injection site, though I suspect that is more a matter of luck than of superhuman physiology. And then, on Saturday, I was able both to open a Frappuccino by myself, and to turn on that one light in the living room, neither of which has been possible on previous Saturdays due to my post-Avonex weakness. Soon I will be able to add other activities to my strong-man routine and impress all the ladies.
In other news, I've got an appointment with the neurologist tomorrow (Tuesday the 5th) to get a note for air travel and find out what, if anything, the next step is. I'll catch up with you again after my appointment.
Posted by Stephan Terre at 1:07 PM
Tuesday, August 29, 2006
Today I had a phone message from the neurologist when I got home: my latest spinal tap test results are in, and they are positive for oligoclonal banding. As you may recall, this result, when combined with MRI and other findings consistent with MS, is solid support for an actual diagnosis of MS. I've got an appointment with the doctor on September 5th, after which I ought to be able to say better what exactly this test result means, but I thought I"d pass along the breaking news as it happens! So far, I view this as good news. A clear diagnosis is preferable to an extended process of worry and discovery. But I'll keep my eyes and mind open anyway.
Also today, I received my second box of Avonex, proving that Walgreen's Specialty Pharmacy, while not as good as Avonex Direct Delivery, is able, at least, to deliver my medicine. They sent it to a Walgreen's that's on my way home from work. The store called me this morning letting me know it was in, and I picked it up on my way home. Well, actually, I came all the way home, realized I'd forgotten to pick it up as I pulled into the driveway, left Audrie a quick note, and drove back to pick it up. On the way there, I passed Audrie coming home, and we exchanged knowing glances through our car windows.
That's all the news for today. For some reason, the last two posts didn't get to Blogger the way I wanted them to, so I sent them a different way just now. Hopefully this one will work okay. And that's what's happenin'!
Posted by Stephan Terre at 8:28 PM
Saturday, August 26, 2006
Another side benefit of being diagnosed with a serious disease seems to be that people open up to you. I've heard a lot of touching personal stories from people I've known for years; but the stories never came out until I myself needed sympathy. It's nice to grow closer to my friends and coworkers, although I wish I did not have this particular excuse to do so.
Posted by Stephan Terre at 8:34 PM
Last week's shot went just fine. I had fewer side effects than previously, and was even able to forgo a morning dose of Tylenol. Yesterday's shot, which Audrie administered with flying colors, seems to have left me with even fewer side effects: I didn't need Tylenol in the night, and have been fairly energetic today. Mind you, I still can't open my own pre-packaged beverages without Audrie's help, nor could I do well on a video game requiring fine motor coordination, but I could sit and help organize our CD collection with hardly a need for a break. Overall, I'm still feeling very positive about the trend in my reaction to Avonex.
Only problem is that, with all this improvement, I'll hardly end up buying any Tylenol at all. Not buying?! Entirely un-American!
Posted by Stephan Terre at 7:57 PM
Saturday, August 12, 2006
I want to write about another benefit of being diagnosed with MS, in a more serious vein this time. But I still haven't been attacked by zombies, so I think my last post on the subject was right on the money.
I've been telling people that this diagnosis has made me "sharper". When I say this, I mean in the sense of a blade, but I recognize that my internal symbolism doesn't translate well. A better externally referenced analogy would be in the sense of a picture: more focused, less fuzzy. I find that I am less willing to waste time being afraid or worrying about what other people might think of me. This reminder of mortality has made me more honest and straightforward. If there's something important to say or do, I do it a lot more quickly than I would have previously. If I've got something to say, I'll say it now instead of keeping quiet out of what amounts to fear.
I see this as a good thing. I believe that it helps me, because I get feedback on my actual thoughts and feelings instead of hiding behind too much politeness. I think it helps others as well, because I am more willing to share my creativity and insight without worry that someone will say my ideas are dumb. Maybe they are dumb—all the more reason to share them, so I can keep from making similar mistakes in the future.
I can feel this attitude improving my relationships and my effectiveness at work every day. Maybe I will lead a full life, just as if I were perfectly healthy. In fact, that's my plan. But if not, I know I'm going to be satisfied with the life I lead, and that's unspeakably precious.
Posted by Stephan Terre at 8:50 PM
Yesterday, my lovely wife gave me my second shot of Avonex. I was more nervous this time, so I was tenser, but she did a great job. Now we'll keep on switching off so that we both stay in practice. My side effects were a little milder this time. For example, I didn't have as many chills in the night. Some of this may be acclimation, but some of it is also me being smarter—for instance, this time I wore pajamas to make the chills more bearable. I've also hydrated even more religiously this time, and my headache today is better than last week. Now that it's evening, I'm starting to wind down, but overall I'm even more hopeful after this weekend's experience.
The Avonex folks also called to follow up with me and see how last week's training went. You can really provide good customer service if you have ridiculous amounts of money, it seems.
Posted by Stephan Terre at 8:41 PM
Sunday, August 06, 2006
Just a quick update on the metabolic half-life of Avonex in Stephan's body.
Yesterday (Saturday), I had a lingering headache until late afternoon. I could also feel the echoes of my joint and muscle pain, which manifested as a slight weakness. Luckily, Mighty Audrie was around to help me open my frappuccino. I didn't even bother taking any medicine for the headache, though, to give you a sense of its non-hurt-a-lot-ness.
I fell asleep just fine and woke up this morning (Sunday) feeling totally normal. Looks like my Saturdays may be days of rest, but I certainly won't be laid up in bed all day. I feel very hopeful—this whole thing seems entirely manageable.
I've got a number of other terrifically interesting things to say in this particular blog, but I am currently much too lazy to actually write them down. Someday soon, though, your RSS reader is going to be hopping. Till then, be excellent to each other.
Posted by Stephan Terre at 10:12 PM
Saturday, August 05, 2006
It's now 17 hours since my first injection of Avonex. I have some good news and some bad news.
The good news is that, although I felt flu-like symptoms, they are entirely manageable. About 4 hours after the injection, I started feeling muscle and joint aches, chills, and a headache. This happens to be 6 hours after I took my Tylenol, so the symptoms may have been masked until then. I woke up every hour or two in the night, thirsty, and drank a glass or two of water.
I took Tylenol again twice more, at six-hour intervals, when the symptoms were strong enough to keep me awake; each time, I fell asleep again shortly. This morning, I have a little headache, but the other symptoms have subsided. I expect to feel normal again by the afternoon.
One fun thing is that, although I had flu-like symptoms, I didn't feel sick. My health and energy were strong. I imagine I'll be able to learn how to differentiate illness from some of its secondary symptoms.
Oh yes, I promised you bad news. Frustratingly, I have yet to show even the slightest sign of developing interesting new superpowers. I was certain that with all the radiation and procedures and injections I've had lately, superpowers would be inevitable. Maybe I'm just a late bloomer—I'll keep you posted.
Posted by Stephan Terre at 10:41 AM
Friday, August 04, 2006
So today I took my first Avonex shot. It's still a bit early to tell how I'm going to react to it, but so far I'm feeling good. The most common side effect is flu-like symptoms. I've just been pretending that I already have the flu all day, drinking lots of water and taking some Vitamin C. Then I took two Tylenol a couple of hours before the injection as an additional preventative.
The way it worked today was that I went down to a local health care facility and got training on how to do the injections, then gave myself my first shot. My wife and my mom both came with me to get training as well, so that they can be back-ups for me as needed. There was also another woman there who was diagnosed with MS two or three weeks ago, accompanied by her husband and their children. The kids stayed out in the lobby and played handheld video games or wrestled while the rest of us got schooled.
Of course I was very meticulous about following instructions and doing everything just so, because that's how I am. I was surprised to find how little the shot itself hurt. It was uncomfortable, especially once the rather long needle was all the way in, and then there was a little pressure when I sent the medicine down the tube, but no big deal. Now I'm just waiting to see how the side effects hit me, because apparently the first time is about the worst it's ever going to be, at least for flu-like symptoms.
I've been very impressed with Biogen Idec, the makers of Avonex. They've got a great support system. I've spent probably two and a half hours on the phone, total, with various representatives who called me to give me tips and make sure I felt comfortable with the whole scenario. They helped me with insurance and got me in touch with the people who did today's training. There's a lot of money in the biopharm business, and it's in everyone's best interest for people like me to keep buying these expensive, effective drugs, so plenty of money gets spent on the support system.
I can imagine some people resenting the weekly injection of a foreign substance into their bodies, especially when it comes with short-term side effects but it's long-term effects are an absence of symptoms. But I choose to look at those little vials sitting in my fridge and see them as tubes filled with life and hope. Here's to hope!
Posted by Stephan Terre at 7:31 PM
Wednesday, July 26, 2006
My second spinal tap is done, and I'm recovering now. I should be back to normal by next week, possibly even this weekend. Although the procedure itself went fine, the side effects were more severe this time, and I spent several long days navigating the Medical Maze (as D— calls it).
The procedure itself went fine, with one wrinkle. I went into the radiology department of St. Joseph's hospital to have it done. Because my neurologist had run into the gate of bone when he attempted a tap the week before, I was having it done under a fluoroscope, a kind of moving-picture X-ray. This way, the radiologist could see exactly where he was going. Most of the people I interacted with at St. Joe's had a very good spirit of care and helped me feel well supported. The radiologist was no exception: he had a very gentle bedside manner, always explained what he was doing, and was warm. He remarked on the volume of fluid he was getting, and said that it must have been one of his "better sticks".
The wrinkle is that, immediately after the spinal tap itself, I had to go back to Outpatient and get some blood drawn. (The test I was having done, checking for oligoclonal bands to support a diagnosis of MS, uses both cerebrospinal fluid and blood.) I ended up waiting about an hour in Outpatient, without much choice but to sit upright for that entire time, which was against my doctor's recommendation. He wanted me flat on my back as soon as possible after the tap. The phlebotomist who took my blood was also confused at first by the order, as she did not recognize the test. I told her what I knew, and she rushed to put a hold on the cerebrospinal fluid so that it and my blood could be processed together. Then I went home.
Now, here's what should have happened next. I should have gone home and rested for three days. The procedure was on a Friday afternoon, so three days would put me at Monday. On Monday, if I was feeling well I'd go to work. If, instead, I still had a positional headache on Monday (one that was worse when sitting up than when lying down), it would indicate that the hole in my dura (the tough sac surrounding the spinal cord) had not closed properly, and I was leaking cerebrospinal fluid. I would call the neurologist's office and arrange an epidural blood patch. This would fix me up, right as rain, and I'd be back to work on Wednesday.
What happened instead is that on Saturday, Audrie and I grew concerned that I might have an infection. We went to the emergency room, which left me in worse shape than before; another ER visit and a day of rest later, I finally got the blood patch on Tuesday and am recovering. That's the summary; but you don't read this blog because I summarize. You read it because I dish the dirt. So read on for the juicy details of intrigue and suspense in monsoon-soaked Tucson!
Let's go back to Friday night. I had just had the spinal tap, and was at home in a well-prepared bed. I had books, video games, and my computer to keep me occupied. I decided to watch the movie The Ninth Gate, a delightful romp through the world of devil worshippers, which I had received as a birthday present but hadn't yet gotten a chance to watch. Taking seriously the instruction to stay on my back, I craned my neck at an awkward angle for a couple of hours, probably straining it. By Saturday, although I had been resting and caffeinating assiduously, I noticed a distinct postural headache. My neck and back were also very stiff and sore, I thought probably from watching the movie on Friday. But then Audrie looked at the injection site on my back and noticed it was swollen.
After my first spinal tap, I had had only a little hole like I had been poked, no swelling. Hep young jazz-cats that we are, Audrie and I turned to the Interweb for clues to help us interpret what we were seeing. WebMD obliged with lots of useful information, including this advice:
After the test
Contact your doctor immediately if you have:
• Chills or a fever.
• A stiff neck. This may be a sign of a developing infection.
• Any drainage or bleeding from the puncture site.
• A severe headache.
• Any numbness or loss of strength below the puncture site.
Well, I did have a stiff neck. I had that swelling at the injection site, roughly dime-sized and ringed with red, possibly indicating subdermal drainage. Maybe I had a slight fever, too—and I had been taking Tylenol, which might mask a higher fever anyway. Good thing we checked! I was clearly experiencing full-blown infection! Actually, we just didn't know what to do now. All we knew was that things were different this time than the first time, and we were worried. Audrie called the on-call neurologist at my doctor's office and described what she was seeing. He advised going to the emergency room to have a doctor look at it and render an opinion on infection, so we did.
Emergency room doctors have to deal with a lot of different kinds of problems, and it's unlikely you'll get a specialist in your particular problem area. But there are some things that they know almost always improve a patient's situation: get him properly hydrated, clean any wounds, manage pain. After I sat up in Admitting with a headache growing steadily worse, that first ER doctor told us I was not infected, and I am glad of his expertise for that. We asked about getting a blood patch, and were scared out of it. The anesthesiologist told us, by proxy through the ER doctor, that there's a risk of chronic pain from the waist down, and they'd rather let it heal on its own. But if I really wanted, he'd do it anyway. The ER doc prescribed Percocet (a pain medication) and a couple of other things to manage the side effects of Percocet, and sent me home. The nurse handed me a Percocet and a glass of water with my discharge papers, and I was on my way.
By the time Audrie had started the car, I was already feeling nauseous from the pain medicine. Pain actually had not been my main complaint, as long as I was able to lie down, and I was perfectly happy with Tylenol up to that point. But out of habit, I took the pill the doctor gave me, and that led me to a great deal of trouble. When we got home, I made poor Audrie run halfway across town to get me the anti-nasea medicine that is apparently de rigeur with Percocet. That helped some, and I was able to eat a tiny supper. The midnight Percocet didn't help my headache, but I slept through most of the nausea. The early-morning pill had me vomiting in less than 5 minutes. From this point on, I couldn't keep anything down, not even water. So by that afternoon, I was back in a different ER with an IV stuck in me.
This time, we brought a pad, blanket, and pillow, and I lay on the floor while Audrie did the first part of checking me in. I still had to sit up to get my vitals taken, though, and was soon vomiting again, from the headache pain as much as from the Percocet this time. Two bags of fluid, one bag of caffeine, and some IV morphine later, I went home feeling...well, feeling at least alive. We had asked about a blood patch again, only to be scared out of it again. This anesthesiologist told us, again by proxy through the ER doc, that there was a danger the epidural needle would actually puncture the dura, and then I'd have an even bigger leak to contend with. The ER doctor prescribed morphine to manage the pain (which still was not a big deal when I was lying down). Out of habit, I took it, and it did help me sleep. I slept most of Monday, not getting much better and not getting much worse. If things had gone according to plan, by this day I would have known clearly that I had a spinal headache and been arranging for a blood patch. But, thanks to the two days of misery in emergency rooms, I was behind schedule. Not only that, but the anesthesiologists our ER doctors had talked to were clearly reluctant to perform a blood patch, and I didn't want someone fearful poking a needle in my back.
Tuesday morning (yesterday as I write this), we did call the neurologist's office and get an appointment for a blood patch with someone who does them regularly and thinks they're not a big deal. Audrie, by now an expert at Admitting, made sure I was set up with a bed straightaway upon arrival, so I didn't have to sit up or lie on the floor. The anesthesiologist took 20 cc (four teaspoons) of blood from my arm, injected it in the epidural space around my spinal cord, and I immediately felt better, if fragile. If I understand correctly, what this blood does is form a compression sleeve around the dura, increasing the pressure of cerebrospinal fluid in the brain so your headache goes away. It also may seal the hole from the original lumbar puncture. Kind of like an Ace bandage, I guess, or like squeezing a balloon animal that has started to get a little flat. When we came home, I didn't know what to do with myself for quite a while. I had grown so accustomed to lying in bed that being able to walk around, if stiffly (my lower back is sore from the blood patch), was a new adventure. I also cried and cried from the relief of what had grown to be long-standing illness.
As I tried to describe to Audrie how I felt, I just kept getting analogies. I felt like a thousand-year-old vase. I felt like a Japanese paper lantern that had been crumpled into a ball and was slowly inflating again. (You have to picture this one as drawn in the style of Hayao Miyazaki's Spirited Away, with the outline of the lantern's real shape forming a ghostly image around the crumpled lantern.) I could hardly remember that weeks were divided into days, for my personal calendar had been reduced to 6-hour periods of sleeping/waking between taking pills. But after eating an all-organic meal from Eclectic Pizza, I started feeling stronger.
Last night I slept a broken sleep, but today I feel better yet and look forward to a full recovery soon. The medicines I took will take a few days to drain completely out of my system. My back will still be sore for a couple more days. I'll have to taper off the high doses of caffeine I was taking. All minor stuff—I feel good, and I feel optimistic.
The neurologist was great, again. He had been on vacation, but came straight from the airport to his office upon getting the page about me. Then it was only about two hours from the time he called me until the time I was getting my blood patch. He called again first thing this morning to check up on me. Now we just wait for the results of this test, and get ready for Avonex. But I'll write about that separately.
Posted by Stephan Terre at 2:11 PM
Friday, July 14, 2006
Went in for my second spinal tap today, but it was a dud. The doctor ran into bone twice when trying to get to my spinal fluid, and decided to postpone the procedure until he could do it under "fluoro". Sounds like something that would deplete the ozone layer, but actually it's a fluoroscope, a device that lets the doctor see what he's doing under X-ray so that he can go right in, easily missing the bone. You can read about fluoroscopy at the Wikipedia if you want, and then you'll know at least as much as I do :)
So the good news is that I won't be knocked out for the next couple of days. I'll just have a sore back where I got poked, something easily treated with warm, moist towels, Advil, and ice cream bars. The bad news is that I will miss some work next week, we'll have to juggle our schedules around, and I'll be knocked out for a couple of days then instead of now. I'm still feeling too keyed up from anticipating the procedure this time to go to work, so I plan to chill with the cats for a few hours and then see how I'm doing. I cleverly stayed up late last night so that it would be easier for me to sleep today—maybe I'll take a nap.
The doctor's office is going to call later and schedule the "third time's a charm" spinal tap for next week. I'll write again when I have more information. Stay cool, have a fun summer!
Posted by Stephan Terre at 9:08 AM
Tuesday, July 11, 2006
Went to see the doctor today, because we kept missing each other over the phone and I wanted to ask about the results of my tests so far. I'll give details at the end of this post.
So far, we still don't have absolutely firm evidence that I have MS, but there's nothing else that appears to be a candidate. I'm going to have a second spinal tap on Friday; the lab didn't run one of the important tests the doctor ordered from the first spinal tap.
I'm also going to start taking Avonex, a preventative drug which helps a lot of people avoid exacerbations of the disease, but it will be a few weeks before that's all set up. First, I have to get signed up with the company that distributes it, get training in how to inject myself (which I'll do once a week), and possibly do some other paperwork. Avonex is a drug that "modulates" the immune system, meaning that it tries to keep it from becoming too depressed or too active. There are not any bad side effects from healthy people taking the drug, so I won't be doing any harm even if I don't have MS after all.
I was once again very happy with my doctor, Dr. Michael Glynn. He is aggressive about treating the disease, and unwilling to take chances with my health. For example, since the lab didn't run the test he wanted on my cerebrospinal fluid the last time, he wants to do this second spinal tap to avoid any question of what might have shown up. He also said that if I have symptoms that break through the Avonex a few times, or if the side effects (generally, a day of flu-like malaise on the day of injection) are too severe, then we'll move me to a different drug; and he'll treat the immediate exacerbation with steroids to help prevent long-term damage. He's totally in favor of me getting a second opinion if I want one. Most importantly, he seems genuinely committed to helping me manage my MS, and he cares about my health and well-being. He also believes that I will do well, both with treatment and with the disease, which I find encouraging.
I'll write again on Monday about how I do with the spinal tap. After that, it will be a week or two before I get the results. I'll write again when something interesting has happened on the Avonex front, as well. Till then, it'll be life as usual: work, spend time with friends and family, play, learn.
For those of you who are interested in more technical details, here they are. My levels of IgG (Immunoglobulin G, or gamma globulin) were normal in both my cerebrospinal fluid and in a subsequent blood test. This is unusual for someone with multiple sclerosis, because IgG levels are generally somewhat elevated in people with auto-immune diseases like MS.
My somato-sensory evoked potential (EP) test was normal, while my visual EP showed a borderline slowdown. Usually, someone my age would be totally normal in both.
The test the lab didn't run was for oligoclonal banding. If this test is positive, then it's a pretty good indication (in my case) that I do have MS. If it's negative, that doesn't give us any diagnostic information. But since the lab didn't run this test, we currently have even less than no information :)
The MRI of my cervical spine was normal. Only the MRI of my brain proper showed plaques (scars).
All of this put together still does not give us a solid diagnosis of MS, but the doctor said there's nothing else that it's likely to be at this point. We'll proceed under the assumption that I do have MS, stay on top of my treatment, and overall just try to keep me as healthy as we can.
Posted by Stephan Terre at 7:18 PM
Monday, June 05, 2006
For "the record" (though shouldn't it be called "the CD" these days?), and for those of you who are coming to Stephan's epic saga in media res, here is a synopsis of how I got on this road to a diagnosis of MS.
On the evening of August 12th, 2005, while having dinner in Denver with an old friend, I noticed that I felt vertiginous if I tilted my head back. I didn't know what to make of this, and it wasn't a strong feeling, so I just filed it away under "pay attention" and went on with the evening. Over the next couple of days, however, the vertigo got stronger and became nearly constant. I also found that I had double vision whenever I looked far to the left, and, eventually, whenever I looked anywhere left of center. After a few days of constant vertigo, I also felt quite nauseous. Trying to focus on a computer screen or anything else close to my face increased the vertigo.
I was in Denver for a week-long work trip. I spent much of the time holed up in my hotel room, not in the vacation-having-fun kind of way, but in the if-I-sleep-at-least-I-don't-notice-how-awful-I-feel kind of way. I went into work on the days when I was really required, and stayed in bed the rest. Eventually, I had the brain wave to get some Dramamine, which broke the nausea and allowed me to work more effectively, but by this time, my double vision was in full swing. When I got back to Tucson, I saw a neuro-opthalmologist, my internist, my osteopath, my acupuncturist, and even my dentist for good measure, although that was a pre-existing appointment. The consensus I got was that the most likely explanation after a single episode was a virus, or an overreaction by my immune system to a virus. The ophthalmologist advised against getting an MRI at that time because MS was still only residually indicated, and even if the diagnostic image came back clean, just the mention of MS anywhere in my record would make me virtually uninsurable.
My double vision gradually cleared up over the following months, until, by December, my vision was basically normal again. But then in mid-April of 2006, I noticed slight vertigo one evening over at a friend's house, and trouble focusing in my right gaze the next day. So I went into the ophthalmologist again. He noted that now I had two events, separated in time and in space (my two visual symptoms came from different parts of the brain), so it was time to get an MRI. And that's where this blog picks up in the 5/5/06 entry.
Posted by Stephan Terre at 7:10 AM
I had my spinal tap on Friday (2 days ago). It went smoothly, and I seem to be recovering well. I'll get my results in a week or so, and will pass them on then.
The experience itself was interesting. I had been hearing a number of different meta-messages about spinal taps. The good Dr. Imberly told me, and I believe her, that it is a routine procedure. Dr. Kate gave the same vibe. Various laymen, however, talked about it with a certain weightiness. I think I now have a better read on what this is about. When my doctor was prepping me for the procedure (which took only about 30 minutes total, from walking into the office to walking out), he said that I should expect to feel a certain pressure on my back. But if I were to feel a pain in my legs, he said, I should tell him at once and remain absolutely still. I imagine this is because it would indicate the needle was rather closer to the actual spinal cord than intended. So I think the mixed emotional messages I've been getting stem in part from the severity of possible side effects. If done carefully by a skilled doctor, the procedure should be routine. But if it goes wrong, the consequences may be rather worse than a bruise, or so I gather.
In any case, mine went fine. It did tire me out. Whenever I have blood drawn, even just a small vial like for cholesterol tests, I feel pretty weak afterwards. In this case, it was my cerebrospinal fluid that was extracted. I didn't feel weak afterwards, but I felt...knocked down. The comparison that came to mind was of floating in the ocean, and being bowled over by a wave. The wave is neither swift nor slow—in fact, it is almost gentle—but you are completely helpless before it. That's how I felt: gently, inexorably, knocked onto my back.
I've been resting, drinking caffeinated beverages, listening to music, playing video games, and taking painkillers. I think I'll probably go to work tomorrow and be just fine; at worst, I may leave early. For now, it's off to make a little more progress in Dragon Quest VIII.
Posted by Stephan Terre at 6:55 AM
Sunday, May 21, 2006
A good thing about having projects that are too big for computers to do quickly is that sometimes you get a few minutes here and there to do other things while you wait on the computer. I found this in such a time today. It's a brief article in the London Free Press about actor Teri Garr, who revealed in 2002 that she has MS. I particularly enjoyed this quotation, though I don't share the sentiment:
Garr says she has a set answer for anyone who tells her how much they ache because she has the disease: "My heart bleeds for you too because you're an idiot. There'll be a cure for MS one day. There's no cure for being an idiot."
Posted by Stephan Terre at 3:25 PM
Tuesday, May 16, 2006
Talked to the doctor today, and he said that the results so far were, as with everything else in my case, a "soft call". I tentatively have a spinal tap scheduled for June 2nd (but have to firm it up with the office staff). Why so long? Basically because both the doctor and I will be traveling in the meanwhile. The hope is that the spinal tap will give us enough additional evidence to turn this soft call into a sure thing. So I don't expect any more news for a couple of weeks. When I get it, I will be sure to share.
Posted by Stephan Terre at 8:19 PM
Monday, May 15, 2006
Another thing that's helping me cope with the idea of having MS is that I've always liked macabre stuff. I had an Edward Gorey coloring book when I was a kid (thanks Mom!); I dug the Mod style in high school and college (and would still if it weren't now called Goth instead). I enjoy the stories of H.P. Lovecraft and the cartoons of Gahan Wilson. I love movies like The Nightmare Before Christmas. If I can fall for a patchwork gal like Sally, I basically have no choice but to accept eerie occurrences when they befall me.
There are limits, mind you. Just because I like The Addams Family doesn't mean that I'm going to spend all my time with creepy crazy people who want to murder me. But it does give me a different lens through which to view my situation. It's a fictionalized, simplified lens, and it represents a model which does not incorporate actual human pain and sadness, but it's valuable nonetheless.
Posted by Stephan Terre at 8:00 PM
Audrie sent this article to me today. It describes using the body's own immune system to target and destroy the "renegade" white blood cells that have improperly targeted myelin as a Bad Guy. The process is still in early trials, so Yours Truly won't get to try it for a while (assuming it passes all its tests), but I love the idea of it. The body wants to be healthy. Just give it a little help, and it can be. It would still be nice to know what causes MS in the first place, though.
Posted by Stephan Terre at 7:45 PM
Sunday, May 14, 2006
It's sad to notice that, from now on, every time I bump into something, or my hand shakes, or I drop something, or I trip, we will wonder whether it's a flare-up of MS. I am clumsy enough to create plenty of opportunities to worry. There should be a standardized scale of the maladroit, so that I could take a baseline reading now; then, in the future, I'll be able to ignore any klutziness that falls within my normal range.
Posted by Stephan Terre at 8:38 PM
Tuesday, May 09, 2006
Today I had a second MRI. The first one was of my head. This second one was of my neck (cervical spine). The neurologist wants to see whether I have any plaques or lesions in that area, in addition to the ones they've already seen in my brain.
The test was done at a new building, just a couple of blocks from my work. I walked there in under 10 minutes, and I think it would have taken nearly as long to drive, what with having to walk to my car, pull out across traffic, make U-turns, park, and get from my parking place to the entrance of the building. Save the world a few hundred steps at a time, that's my motto for today. The people at the imaging center were all super nice, and had an excellent business-wide attitude. Every step of the way, I had one-on-one time with whoever was attending me, from the checkin receptionist to the nurse who set me up with a personal locker in a private changing room to the lead technician who came out to apologize for running late. All the technicians had a caring attitude and made real efforts to relate to the patients. I admire the corporate ethos that encourages this kind of pervasive caring.
They were also quite careful and thorough about the test itself. When my first machine, a Toshiba, had what looked like an imaging artifact in the picture, they re-did that portion of the test on another machine (a Siemens). That took extra time and effort on their part, but also confirmed that what they were seeing was, indeed, only an artifact, and not a Hot Wheels model car that had somehow lodged in my spine, or whatever it looked like.
The doctor won't see the results of this MRI until Thursday (on which day I'm flying to Utah anyway). I am betting that I won't know more until next week. I guess there's a possibility we won't schedule a spinal tap if the results so far are conclusive, but right now I'm still assuming that we will, so it'll be another couple of weeks total before the doctor has all the results in hand. Stay tuned for more exciting developments!
Posted by Stephan Terre at 7:05 PM
Monday, May 08, 2006
I'm going to have to come up with better titles for rambles. "Tuesday's Thoughts" will soon be rather ambiguous otherwise. Plus, I had some of these thoughts yesterday. And double plus, I just realized it's not Tuesday.
One bummer about having an expensive disease is that it ties me to a medical insurance, and therefore to a job, in a new way. I've been planning to retire at age 50 for many years now. Recently, my lovely wife began thinking that it wouldn't be a bad idea for her to retire at age 50, too. But now, in addition to imagining carefree lives of mixing piña coladas and pursuing hobbies, we have to imagine paying for an expensive drug habit too. Guess we'd better make those drinks virgin.
Having been basically healthy for most of my life, depending on regular doses of a pharmaceutical to keep me going seems like a big change. But it's not actually much different than the other constraints of living in a body; it just places me in a more specialized ecological niche. Some species can live in many climates, some in just one. I guess I'm changing from a black bear to a cave fish. I hear the caves host some pretty good parties, though. There's plenty of other perspective to be had, too. A few hundred years ago, something like half of the people who were my age had already died. I share this world with plenty of beings whose opportunities are more limited than mine. Or you can go the other way, and imagine a nation of super-heroes. To them, our most fulfilled lives might seem wretchedly limited: we can't even fly, for heaven's sake!
Posted by Stephan Terre at 7:53 PM
Friday, May 05, 2006
You know, people are all down on MS, but I think that incurable brain diseases get a bad rap. I'm compiling a list of the benefits of MS to help improve its image.
First of all, if you're going to get some kind of incurable disease, a brain disease has got to be tops for coolness. When the incurable diseases go to parties, do you think that Incurable Foot Disease is constantly surrounded by the ladies? Or Incurable Nose Disease has a stylish wardrobe? The answer, my friends, is no; but when Incurable Brain Disease walks in the room, heads turn. The guy's got serious mojo.
I've also now got an ironclad excuse for acting eccentric. In the past, I've had to deal with some strange looks and tsk-ing noises, because it was assumed that I was just some hippie weirdo. As soon as I've got my diagnosis, though, I'll be in the pink. Maybe I'll get a little ID badge like the feds are always flashing on cop shows. Someone shakes their head at my antics, and BAM! Out comes the badge. Who'll be shaking his head then? Me, that's who. Sadly, and pityingly, with a pinch of stern authority thrown in for good measure.
It's late, so I'll leave the many remaining boni for another time, but I've got to mention the main perk: zombies do not dig the folks with MS. Our brains have this weird coconut flavor that just does not complement the taste of regular brains. Next time there's a zombie outbreak, you mark my words: I'll be sitting pretty, hanging out in the living room and sipping mint juleps while everyone else runs around screaming in fear.
On another subject, I've noticed a curious inconsistency in my friends' attitudes. Sure, they all talk sweet about how they wish they could help when I break the news. But the minute I suggest the obvious helpful action of becoming brain donors, they change their tune. The most common excuse is, "oh, you don't want my brain." Um, actually, I do. That's why I suggested it, people. You're going to have to do better than that if you want to stay on my good list.
Posted by Stephan Terre at 10:50 PM
So, just to put things in perspective, yesterday I cleverly cut my finger while trying to take apart the furnace to clean our air filter. Don't worry, my tetanus shot is current. Moment to moment, I have to say that this little cut on my finger is causing me quite a bit more inconvenience than MS! Today I can type again (obviously), but I still have to remember to walk on Audrie's right side if I want to hold hands with her.
Posted by Stephan Terre at 10:30 PM
Yesterday I had my evoked potential tests. I won't get the results until I next see the neurologist, which will be after my second MRI and my spinal tap (probably 3-4 weeks total).
The test itself was kind of interesting. Both tests work basically the same way. I got electrodes hooked up to my head, on top of conducting gel that is like the stiffest hair styling product you've ever seen. For the rest of the day, I had all these little areas of crazy hair sticking up every which way. A little stiffer, and I could have turned my head into a weapon. So anyway, electrodes on the head, and then a stimulus applied to my normal perceptual apparatus: my eyes and the skin of my ankles. The computer recorded both the stimulus and my response to it, so I was basically a portion of a machine for 40 minutes or so. Whoever first thought of measuring themselves this way must have been psyched. It's a big creative leap to go from measuring the response of a tube or a transistor or something, to measuring the response of an entire person's sensory system.
For the visual part, I just had to look at a checkerboard pattern of 1024 black-and-white squares on an old tube-style monitor. They flipped back and forth periodically while I stared at the center of the screen to get maximum coverage of my visual field. For the somato-sensory part, a word which my spell-checker really does not like, I got mild electrical shocks applied through pad electrodes on first my left ankle, then my right. They were quite mild, although they made my toes dance like a drunken goth at a midnight rave. It felt a lot like having my ankle right up next to the jet in a hot tub.
Audrie found out some good news. She looked into our insurance, and it turns out that our plan covers Avonex (the medication that the doctor is suggesting), with us only having to pay $30 a month. Avonex wholesales for something like $20,000 a year; that's a nice discount! We also have a pretty solid disability plan (which I hope never to have to use). So in addition to the great social support network which surrounds me in the form of all my friends and family, we've got a good insurance fallback as well.
Posted by Stephan Terre at 10:21 PM
Here's a copy of the email I sent to my friends and family Wednesday of this week, the day after I first heard that I might have MS.
I went to the neuro-ophthalmologist yesterday to get the results of my MRI from last week. He said that the MRI showed lesions in my brain. I've also had two demyelinating incidents that happened at two different times and at two different places in the brain. The whole package, lesions + spatially diverse events + temporally diverse events, adds up to multiple sclerosis.
The MRI showed other areas where nerves had become de-myelinated, not just the ones associated with my recent double vision. This suggests that I have had nerves get de-myelinated in the past, just without any symptoms that I noticed. The fancy name that the doctor used for the lesions was "regions of T2 hyperintensity".
Today I went to see a neurologist to take the next step on finding out whether I have MS, and what to do about it if so. MS is hard to diagnose because you have to rule out all the alternatives first. I'll be having three more tests that will help firm up a diagnosis. I also received information about treatment and prognosis, if I am diagnosed with MS.
Tomorrow, I'll have an evoked potential test on my vision and my somato-sensory systems. This is a test that measures how well electrical signals travel through your nerves. While an MRI takes pictures of your body, this test measures how well your body works.
Next Tuesday, May 9th, I will have a second MRI. My first MRI was just of my head. This second one will be of my neck area. The purpose is to discover whether I have any more plaques (scars) on nerves in my neck area. If I do have more plaques there, it lends weight to a diagnosis of MS.
In a couple of weeks, I will have a spinal tap. In a spinal tap, a small amount of the fluid that bathes your brain and your spinal cord is extracted and examined. The doctor will be looking for indications that nerves are being demyelinated.
Once I've had all these tests, the doctor will be able to make a better determination as to whether I have MS. So far, MS is still the likeliest explanation, and we're moving ahead on the assumption that I have it.
There are a handful of drugs available to treat MS these days, although there is still no cure. The doctor gave me an information packet about Avonex ( http://www.avonex.com/ ), which is a once-a-week injection of interferon beta-1a. The purpose of all the MS treatments is to slow the formation of lesions in the brain and central nervous system. If you start treatment early, then the prognosis is generally very good. This is because permanent damage and disability generally only happens in MS after multiple repeated demyelinating events. Eventually, the conducting fiber of the nerve itself, the axon, can be damaged. So if we reduce the incidence of demyelination, it is much less likely that any permanent damage will occur. The side effects of Avonex are flu-like symptoms the day of the injection. For most people, the severity of these flu-like symptoms decreases over the course of treatment, as your body gets used to it. However, if Avonex does not work for me, there are other options as well. Their basic approach is all the same: to decrease the incidence of demyelinating events.
In summary, I will be having a few more tests to help determine whether I really do have MS. I'll have the results of all the tests in about a month. Right now, it appears quite likely that I do have MS; I just do not yet have a formal diagnosis. There are good treatment options for me if I have MS. I expect a basically normal life, and a basically normal span. I'll keep you posted as I learn more.
So how am I feeling about all this? Curious, accepting, uncertain, scared, relieved, skeptical. MS is a strange disease, and its symptoms are all over the map. I don't know what the future holds, but I intend to meet it with eyes, arms, and heart open.
Posted by Stephan Terre at 10:03 PM
I'm starting this blog as a place where I can write about, as E— put it, "my path through life with MS as my constant partner". I don't yet know what I'll put here, but to start with, I'll post updates on my status, the progress of my diagnosis, and whatever related thoughts come to mind. So that will probably include a fair dose of silliness.
I want to keep this separate from my regular blog because it has a different purpose and a different audience, but I may find myself doing some cross-pollination as time unfolds.
Because I am lazy, I also plan to post updates here rather than trying to email them directly to all my wonderful friends and family.
Anyway, welcome and thanks for stopping in. Let's get started, shall we?
Posted by Stephan Terre at 9:53 PM