Learning the Ropes

August 26, 2010 at 8:08 AM | Posted in I have MS., I learn from my mistakes., What's up? | Leave a comment

A little over two weeks ago I switched to Copaxone as recommended by my neurologist. It differs from Avonex in many ways but the most important to me (right now) are administration method/frequency and side effects.

Copaxone is injected every day, whereas Avonex was once a week. I am having some difficulty getting into a routine with daily shots. You’d think it’d be easy, right? A friend asked me, “Isn’t it easier than remembering a shot once a week?” Turns out, no. I have off Wednesdays so Tuesday nights it was so easy to remember, No work tomorrow, shot tonight. I have decided to take the Copaxone in the evening, which is not the time of day that I have ever taken medicine on a regular basis, so it is a struggle to remember. I’m getting better about it, though, and have only completely forgotten once.

Copaxone is a subcutaneous shot, whereas Avonex was intramuscular. This means a MUCH smaller needle that I don’t even feel going in most of the time. There are more bodily locations I rotate through and most are different than where I used to inject. I still need Bill to administer some of the shots if I am to use all of the locations because I can’t (easily) reach some of them. I can do the shot manually or using an automatic injection device. We’ve both tried both injection methods and are still deciding which we prefer — each has it’s pluses and minuses.

Copaxone’s main side effect for me is a reaction at the injection site, whereas Avonex’s was flu-like symptoms. I thought I would mind that less but, um, not so much. I could treat the flu-like symptoms pretty successfully with OTC pain relievers and extra sleep, especially once I got the hang of what to expect. These site reactions are a harder beast to figure out, though. At first I just had a little burning and a bee-sting feeling for about 15 minutes; ice helped that some. Now I have redness and swelling that lasts beyond the initial sting and carries on as itching that can’t be scratched (too painful). Tuesday I stayed home from work because I had several injection sites that looked and felt like huge hives — I was driven to complete distraction by it. The good news is that I can do some things to tweak my injection preparation and technique in an effort to quell the reactions, which is exactly what I’m doing. I’d rather not go the trial-and-error route but I don’t have much of a choice here.

Copaxone’s manufacturer, Teva Pharmaceuticals, offers a program called Shared Solutions.* It is a network of resources for MS patients on Copaxone and their caretakers. Shared Solutions sent a package of information and an instructional DVD, set up a training nurse for me who came to our house and showed us how to do the injections, and had a specialist call after I started the injections to ask if I needed anything (which is how I got a nifty travel case for the medication + supplies). Shared Solutions was my first call with questions about the site reactions, and a nurse there talked me through some possible reasons and ways to help. They are poised to put me in touch with another Copaxone patient who can offer support as well; I am not taking advantage of that (yet).

SPACE

*Biogen Idec, the makers of Avonex, offered a similar program too.

The Second Week of July 2010

July 11, 2010 at 8:08 AM | Posted in I have MS., I learn from my mistakes., What's up? | 2 Comments
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Dear Readers,

I spoke to my neurologist about this current relapse. I told him about my tingly feet, how the numbness was moving up my legs, and how I was tired and feeling sad. He said the prognosis was still good since my symptoms are mild and only sensory, asked if I was taking Zoloft (I am) or feeling suicidal (I’m not), and said that we should do something to try to make the disease less active. To that end I am switching from Avonex, a once weekly intramuscular injection, to Copaxone, a daily subcutaneous injection. Depression and fatigue are common in MS, so those might go away if we keep the disease in remission. Depression is also a side effect of Avonex, so it’s possible that some of my meh-ness might go away when I change meds. I will continue to take Zoloft for the foreseeable future because…well, why not. Better to be safe than sorry (or sad). Overall, the doctor is still very optimistic and said that he thinks there is nothing to worry about.

Even though we didn’t go on a family vacation, I ended up staying home from work this past week anyway. I was in no state to function properly there. Not a day passed that I didn’t need a long afternoon nap — 1 1/2 to 2 1/2 hours — and my thinking was not consistently clear throughout the day. I did try to do a few things so as not to exist solely as a lump on the sofa and, well, let’s say the results were mixed.

Activity: Unraveling a sweater
Position: Seated
Accomplishment: Wool yarn gathered to be used later in the construction of a Christmas stocking.
Unintended consequence: Tired arms — like, more tired than when I spend all day at the keyboard. Had to break up my unraveling sessions to give myself some recovery time.

Activity: Cleaning an area rug with soap, water, and a scrub brush
Position: Kneeling
Accomplishment: Pet smells eliminated (hopefully) so as to discourage future use as an elimination location when the dog just can’t hold it.
Unintended consequence: Realizing how many spots were discolored on the rug from my trying to clean it in situ — the pet stains were gone but the bleached spots from my previous attempts to eliminate them were horrible. Decision to purchase to new area rug.

Activity: Volunteering at the Felege Hiywot Center for two hours
Position: Mostly seated
Accomplishment: Made an incremental difference in the lives of a few kids (hopefully) by teaching them about the wonders of scientific investigation.
Unintended consequence: Not feeling totally awful physically, likely because I spent the time sitting down in a cool room. (I expected to feel like total crap by the time the class was over but I took it easy, medicated, hydrated, and did okay.)

Activity: Shopping for a new area rug on-line
Position: Seated
Accomplishment: Purchased a rug that I think will serve us well. Caught a sale on an already-reduced price, got a rebate, and snagged a free shipping code.
Unintended consequence: Spent much more than what I thought I would when I started shopping.

Activity: Decluttering and reorganizing computer files
Position: Seated
Accomplishment: Slightly simplified our filing system. Cleared out a bunch of unnecessary files.
Unintended consequence: Screwed up the finely-tuned system that Bill had going in iTunes. Attempted to rectify that and made it worse.

Activity: Spray painting a brass chandelier that I purchased on Craigslist
Position: Standing and squatting and bent over
Accomplishment: Completed the first coat of white, which completely covered the awful brass.
Unintended consequence: Colored my nose hair white.

Activity: Photo shoot for Angie’s List article
Position: Walking and posing
Accomplishment: Media exposure…?
Unintended consequence: TBD

Activity: Checking in with work on my laptop
Position: Seated
Accomplishment: Went through my inbox and answered e-mails, placed requested orders (since I am in charge of inventory for my department), updated my time sheet, kept current on training, blah blah blah.
Unintended consequence: Felt worse about not doing more instead of feeling better about doing something. Started having The Sunday Funk on Friday in anticipation of the culture shock of returning to work on Monday.

I’m having a harder time with this exacerbation than the first one even though the symptoms are basically the same. I don’t know if it’s because the weather is hotter, I am not remembering that first one accurately, or I have become significantly wussier since the fall. Emotionally, though, I am doing better now than I was a week ago. That’s something.

Hugs and kisses,
Sacha

Our New Raised Bed Garden

June 3, 2010 at 8:52 PM | Posted in I learn from my mistakes., What's up? | 2 Comments
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The previous owners of this home installed a raised bed garden on the northern property line in a space that gets plenty of sun during the day. For many years I did nothing with it…well, other than grow weeds, but that was without any effort on my part. For the past few years we have piled leaves into it in the fall and last year I added worm castings compost + some topsoil to it with the intention of cultivating a wildflower garden.* This year I decided to get serious about attempting a vegetable garden, which meant overhauling the garden bed.

Step One was making a plan for what I would plant. I used a modified version of the square foot gardening technique that I haphazardly researched before diving in like a chump an enthusiast.

Step Two was going out and buying a bunch of vegetable plant starts.** I bought a couple at Whole Foods after reading Angie’s post but most of them I grabbed on sale at Menards because they were so cheap. Also, my mother-in-law gave me tomato plants for Mother’s Day of a variety that I loved from her garden last year — isn’t she thoughtful?

Step Three was getting rid of the rotted timbers on the raised bed garden. I replaced them with a Greenland Gardener Raised Garden Kit I bought at Sam’s Club. It worked like a charm and looks much better than Bill thought it would. If I am successful with the garden and want to do more next year then I would certainly buy another one of these kits in a heartbeat.

Step Four was filling the bed with a good growing mix. I used a foundation of the soil that already existed in the bed, then raked in a layer of peat moss, then raked in a layer of aged horse manure. The existing soil was already dark and crumbly and filled with worms after many seasons of lazy neglect careful tending, which is much different than the hard, clay-like soil that the grass grows in.

Step Five was planting. I used a tape measure and popsicle sticks to mark my grid in the dirt and got to diggin’. This part went much faster than I thought it would. After planting I sprinkled in some Preen and raked it in with a small layer of Miracle Grow gardening soil. Maybe one day I’ll go organic but for now I’m relying on agrochemicals.

Step Six was installing a fence made of vinyl-coated wire mesh. Not only does it keep out the rabbits but it stops the dog from digging in that delectable-smelling soil.

What’s left now? Building a trellis for the climbing plants and installing it. I already have some PVC pipe + steel concrete-reinforcing mesh as building materials, not to mention a plan in my head. We’ll see how that goes.

SPACE

*This later became a sunflower garden after the dog dug up the bed and displaced all of the wildflower seeds.

**Step Two-and-a-Half was giving away a bunch of them when I realized that I purchased too many for my plan.

The previous owners of this home installed a raised bed garden on the northern property line in a space that gets plenty of sun during the day. For many years I did nothing with it…well, other than grow weeds, but that was without any effort on my part. For the past few years we have piled leaves into it in the fall and last year I added worm castings compost + some topsoil to it with the intention of cultivating a wildflower garden.* This year I decided to get serious about attempting a vegetable garden, which meant overhauling the garden bed.

@PostSecret I’m not the only one.

May 14, 2010 at 8:08 AM | Posted in I learn from my mistakes., What's up? | 2 Comments
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Do y’all read PostSecret? It’s is an ongoing community art project where people mail their secrets anonymously on a postcard to Frank Warren and he posts a selection of them every Sunday. I’ve been checking it out for several years now — it’s pretty cool. Sometimes Frank will put snippets of e-mails that he gets on the site between that week’s postcards and every so often you’ll see something like, “Hey, I saw my secret but I never sent in a postcard. It’s reassuring to know that I’m not the only one.”

None of the secrets really spoke to me, though, certainly not enough to prompt feedback. Some of them were moving, some were funny, some were boring, but none connected with me on an emotional level. I started to think about what I could send in as my own secret. I caught myself wondering, “Does anyone know [this] about me? Would that count as a secret? Would it be interesting?” Let’s be honest — I didn’t want to be one of the boring secrets.

See? No wonder people keep secrets.

Anywho, I caught myself doing something that I don’t think I ever told anyone I did. I thought, “This could be my PostSecret secret.” And then I took no action, sent no postcard, just ambled along with life. When I checked for new postings on March 7, 2010, I saw this in the line-up:

That’s my secret. I never sent in a postcard. It’s reassuring to know that I’m not the only one.

Avonex Shot #2

January 6, 2010 at 11:42 AM | Posted in I have MS., I learn from my mistakes., What's up? | Leave a comment
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Dear Readers,

Last night was my second injection of Avonex. Learning from the experience of my first shot, I did a few things differently. I took ibuprofen and acetaminophen around 7 PM, which was way before I planned to get the shot, so that I would have time for another dose of each before bedtime. This turned out to be a good call: Bill gave me the shot around 8:30 PM* and I did okay until the next dose of pain relievers at 11 PM. I slept through the night like a log and woke up at 5 AM with no more than a headache. Okay, that still sucked, but it was better than full blown flu symptoms. I took more pain relievers in the morning and then walked on the treadmill for 40 minutes, which I have been doing all week. So far, so good. After Bill and Anna left for the day, I went back to sleep for a few hours — unplanned, just knocked out on the sofa watching a movie — and then took acetaminophen when I was on my feet at 10 AM. I still feel a little wiped out so I’m glad that I have Wednesdays off this year.**

Update: I felt a little sluggish all day long and then, around 7 PM, my joints started to ache. I took more pain relievers and laid down for the rest of the evening but that was unexpected. Maybe I should have been medicating all day…? I’ll try that next time.

What does the Avonex do for me? I realized that’s probably not clear to y’all. What it’s shown to do is make my MS attacks fewer, work against the growth of lesions on my brain, and slow the progression of the physical disability associated with my MS. Those are the reasons why I’m taking it, why I deal with the side effects.

Speaking of side effects, the Avonex has a tendency to cause more than flu-like symptoms. The other main side effect is depression. I was worried about this one. I was on the edge of clinical depression before, then came the diagnosis with its vagueness and its life-plan-changingness, then came a treatment that causes sadness, “and it’s winter!” said the doctor at work yesterday — “a perfect storm,” he said as he wrote me a prescription for Zoloft. I’m going to try to head this one off at the pass. I spent the last week of the year off from work just sitting around the house not motivated to do anything, even though I made a nice list of projects to tackle, and I don’t want to find myself in June thinking Wow, I haven’t felt like myself all year. I should’ve done something about that. I’m on it.

Hugs and kisses,
Sacha

* Anna watched me get the shot last night. It was her choice and I’m glad she did it.

** My line management was kind enough to allow me to shift to an 80% work schedule this year. I don’t know what I’ll do with that extra day off yet but I’m certainly glad that I have it available.

Directions to our Hotel:

From Terre Haute / Western Indiana:
I-70 East to exit 68 for Ameriplex Parkway South. Stay on Ameriplex Parkway South to the 1st light. Turn left on Exploration Drive and then left again on Hatfield Drive. Follow to the end.From Indianapolis / I-465:
From I-465 take exit ramp 9B to I70 West. Take I-70 West to exit 68 and follow the Ameriplex Parkway south exit to the 1st light. Turn left on Exploration Drive and then left again on Hatfield Drive. Follow to the end.

From Washington St. and Ronald Regan Drive:
Go south on Ronald Regan Drive. Continue south on Ronald Regan and it turns into Ameriplex Parkway South when you pass over the interstate. (I-70). Stay on Ameriplex Parkway South to the 1st light. Turn left on Exploration Drive and then left again on Hatfield Drive. Follow to the end.

From Plainfield at 267 and Washington Street:
Go South on 267 to I-70 West.Take I-70 West to exit 68 and follow the Ameriplex Parkway south exit to the 1st light. Turn left on Exploration Drive and then left again on Hatfield Drive. Follow to the end.

From Kentucky Ave. / Highway 67 / Mooresville / Martinsville:
Take Ameriplex Parkway. Traveling west on Ameriplex Parkway go to the 3rd light and turn right on Exploration Drive. You will then take the 1st left on to Hatfield Drive. Follow to the end.

Time to Start Treatment

December 31, 2009 at 10:20 AM | Posted in I have MS., I learn from my mistakes., What's up? | 2 Comments
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Dear Readers,

In case you’re not caught up, I have MS. Well, technically I have high-risk CIS, but let’s not split hairs.

The doctor recommended in late November that I start treatment right away.* Bill was on board with that. I was initially somewhat hesitant.** I decided to start with Avonex and left the office that day with a packet of information from Biogen Idec, and by “packet” and I mean “binder”.

The pharmaceutical company has a pretty slick program for people starting treatment with Avonex:

1. A case manager gave me a call and spent some time talking to me about the drug, educational resources, the support network available, and the free sample program that I was being enrolled in. He took my insurance information and said that the company would look into all the details to get me this drug the most affordable way possible (which is handy, since the retail price for this treatment is about four grand per month). He also mailed me a package with a DVD instructional video on self-injection and a handy-dandy (and totally unnecessary) aid for gripping the syringe.

2. The pharmacy called me and a pharmacist talked to me about the drug — storage, administration, side effects, etc. She mailed me a shipment of four pre-filled syringes, which were my month’s supply of free sample to get started. She also let me know that a nurse would call me to schedule injection training in my home. Then she transferred me to an Avonex case manager, who made sure everything was going well.

3. The nurse called to schedule injection training. Then she came to our home, spoke to us about the drug (storage, administration, side effects, etc.), covered what to do in an emergency, answered any questions that we had, walked Bill through giving me the first injection, and then stayed around for another 15-20 minutes to make sure I didn’t go into anaphylactic shock.

My first injection was last night. I’m guessing it was about 6:45 PM when I got the shot. Mindy the Training Nurse told me to take something to ease the flu-symptoms side effect, which I did around 7 PM. Bill kept asking me how I felt and, truth be told, I felt okay — a little queasy, with a bit of a headache, but nothing that some ibuprofen and acetaminophen didn’t remedy handily. We watched some TV and went to bed. I was thinking This isn’t so bad after all.

Then the pain relievers wore off like clockwork around 1 AM. I woke up trembling from the chills, struck with involuntary stretches and other muscle movements, terribly achy, sick to my stomach, with a stuffy head — you know, just like I had the flu. It was rotten. Bill got me another dose of pain reliever and held me until I fell back to sleep, quaking with discomfort until the medicine kicked in. I took more pain reliever when I woke up this morning just in case the spell wasn’t over.

Here’s how I plan to improve in the future: Take the first dose of pain reliever early enough the evening of the shot such that I can have another dose before bed, hopefully eliminating the waking-up-in-the-middle-of-the-night bit. Then take another dose as soon as I wake up in the morning. Oh, and do the injection on an evening where I don’t have anything important the next day.

All of the experts that spoke to me about the side effects (doctor, pharmacist, nurse, etc.) told me that the flu-like symptoms should get better over time and may completely go away after about six weeks. Let’s hope. That sucked.

Hugs and kisses,
Sacha

* “Right away” to me meant “before your next exacerbation” but to Bill it meant “NOW! NOW! NOW!” The fact that a month went by before I actively started the treatment had different significance to each of us based on our underlying perspectives. This was a good lesson for me in understanding and sympathizing with my partner’s stress about my diagnosis.

** How sick would the flu-symptoms side effect make me feel? How sad would the depression side effect make me? Should I choose a non-interferon drug? Would I be able to give myself a needle all the time? Should I choose a longer IM needle given less frequently or a shorter sub-Q needle given more frequently? What if I didn’t have another exacerbation soon? Ever? WHAT IF?

We need more hawks.

June 5, 2009 at 12:53 AM | Posted in I learn from my mistakes., What's up? | 1 Comment
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Shot from inside the house through my screen door.

Shot from inside the house through my screen door.

I bought this bird feeder because it was not supposed to accommodate squirrels. This guy looks fairly accommodated, no?

I noticed that the lid of the feeder has been twisted off when I come home from work. It had tell-tale scratch marks on it so I knew it was a squirrel. What I didn’t know was that the damn squirrel was sitting INSIDE the bird feeder while he/she ate seed meant for the birds. Jerk.

Yeah, so, I didn’t plan THAT.

March 12, 2009 at 11:03 PM | Posted in Bill is my husband., I am handy., I learn from my mistakes. | Leave a comment
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The kitchen faucet started leaking (i.e., water shooting out of the base) several weeks ago. Bill requested that we get a goose-neck faucet to replace it to give him more room when washing dishes. He does the dishes most of the time, which makes me very happy, so I was happy to agree with his suggestion. So off we went to Lowe’s to buy a new faucet.

The compressor on the heat pump started malfunctioning (i.e. making a loud clanging noise) several weeks ago. Two weekends ago the damn thing banged for the whole day on Saturday. I called the company that does seasonal maintenance on the system to come take a look at it the following Monday. Of course, no matter what the tech did, the compressor made no inappropriate noises. He still took a guess at what the problem might be and quoted me $300-$500 for parts. I asked him to have someone from sales call me to discuss a price for a whole new system.

While I was in the kitchen waiting for the technician to complete his inspection on the compressor, I discovered that the garbage disposal had bitten the dust (i.e., leaked sludge into the basket under it and ruined all of my zip-top storage bags, wax paper, aluminum foil, and other such disposable food wrappings). So off I went to Sears to buy a new disposal.

The heat pump salesman comes Saturday morning and spends almost two hours talking to us about a new system before we have to take Anna to acting class. Bottom line is a new system will cost WAY more than we anticipated — something to the tune of six grand. Yikes.

Monday I have the vents in the house cleaned. Why not, right? I dodge the guy’s attempt to make me spend even more money by having the air handler cleaned (since I might get a whole new system anyway) and think I’m in the clear when that’s done. The compressor had another idea. The compressor started its noise-making again — not the same clang but a steady ticking — and I immediately called the HVAC company back. They thoughtfully sent another tech to check out the problem right away…and he thought it was something else, giving me a different quote for $500 in parts. Nice.

Sunday night I turn off the water to the sink and the power to that area in the kitchen. My plan is to remove the old garbage disposal, remove the old faucet (and soap dispenser), install the new faucet (and soap dispenser), and then install the new garbage disposal. None of these tasks is very hard on its own. The old garbage disposal comes off — with considerable effort but off nonetheless. No luck getting the faucet off (or soap dispenser), though. And by no luck, I mean we both tried with the tools we had, with the new basin wrench I bought, and with copious WD-40. After two nights of effort, we decide to just replace the fu<k!ng sink. So off we went to Home Depot to buy a new sink. The new sink we purchased from Home Depot turns out to be dented when I took it out of the box. So back I went to Home Depot to exchange the new sink.

Still reading? The story continues. I now have a faucet, a soap dispenser, a garbage disposal, and a kitchen sink to replace. And I’m in all-day, all-week training for work that can’t be missed. And if I wait until the weekend to finish then we have no sink, no water, no dishwasher…you get the idea. So I plunge ahead. With Bill’s help (when I need an extra set of hands or someone to lift/hold something heavy), I install a new sink complete with new faucet, new soap dispenser, and new garbage disposal. It looks really pretty — shiny and fancy and out of place in the otherwise mediocre kitchen. There is a small hitch however: the position of the garbage disposal changed when we moved from a two-bowl sink to a one-bowl model and now the pipes under the sink don’t line up to connect the disposal to the waste line in the wall. So off I went to Home Depot to buy new pipes…TWICE because the first trip didn’t yield the combination I needed because the guy in the plumbing department was at lunch and I had to base my choice on my own guess + shoddy advice from some other Home Depot associate.

Sooo, long story long, three evenings, five trips to Home Depot, lots of swearing, a significant learning experience, and $500 later and we have a spiffy new place for me to wash vegetables and Bill to wash dishes. Bill’s lobbying for a tall faucet and undivided sink yielded a workspace that we both enjoy much more than the old set-up. Strong work, William!

Other facts of note:

  • We replaced the dishwasher last month. You’d think we would’ve learned already not to engage in DIY endeavors on weeknights from that experience.
  • I had the hot water heater replaced on Christmas Eve when it died (i.e., failed to hold water when the bottom disintegrated).
  • I had the refrigerator repaired in October.
  • I just ordered a new washer and dryer set, which was supposed to be delivered at the end of the week that I ended up spending each night working in the kitchen although I had planned to paint the laundry room. No matter, though — the W+D are not being delivered when scheduled because they haven’t come in yet!
  • I think the only major appliance/system left to go is the range. I’m wondering if we should just start shopping now…?

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