One of our friends is preparing a fresh guacamole now, for a taco dinner this evening. It has filled the main living area with the most wonderful smell of fresh onions, garlic and the like. Yum!
Saturday, July 25, 2009
One of our friends is preparing a fresh guacamole now, for a taco dinner this evening. It has filled the main living area with the most wonderful smell of fresh onions, garlic and the like. Yum!
Wednesday, July 22, 2009
I selfishly spent more time than I should have relaxing, talking and drinking coffee with some of our fellow vacationers out on the deck rather than get Skip up and into the shower. As a result, she had been waiting quite a bit longer than I said I'd be, and she was pretty cranky herself when I went into the bedroom to get her up. I responded crankily and we had a bit of a spat as I was getting her up and into the shower.
After her shower, when I went out into the kitchen to get Skip coffee, I saw the rest of the vacationing group sitting out on the deck with coffee, enjoying the morning and each other. I was so jealous! How would that feel, to just be a "normal" couple, so we could have been on that deck with our friends? It's been 100 years since that was the case, and I don't often indulge in thoughts that do no good, just make me feel bad. Thoughts like "why couldn't that be us?" But I saw them on the deck and the jealousy hit like a spasm.
So, I brought Skip her coffee and descended into self-pity. She asked me what our friends were doing and I bitterly said "living."
Through the early afternoon, the bad feelings from the morning lingered, causing me to look darkly at the day. By mid-afternoon, a walk with the pups to let them explore, some relaxation out on the deck with our friends, followed by a late afternoon swim all helped to lift my spirits.
After dinner, the group of us played Wii Sports and it was really fun. A great group game because it's fun to observe even if you're not playing. It will be a fun activity for us on those inevitable rainy days during a two-week vacation.
Tomorrow the weather forecast is for a lovely summer's day. I'm looking forward to getting the morning off on the right foot by bringing the right balance of self-indulgent relaxation for myself and timely caregiving for Skip. Then, we'll enjoy the sunny weather out on the dock. I suspect it'll probably be the right day to go scout out the boat landing for Skip's swimming adventure.
Monday, July 20, 2009
We're here in Maine on vacation. It's been great!
The sun and warmth caused Skip to get a bit weak both afternoons. In the late afternoon both yesterday and today, she's taken a nap in our room. With her wheelchair's tilt and recline functionality, she's able to stretch out fairly flat for a comfortable snoozing position. She doesn't normally nap in the afternoons, but it's working well here. She can allow herself to get a bit pooped in the afternoon and recover for the evening's dinner and visiting.
It's been wonderfully relaxing here. The food is great. The company is even better. We are very, very lucky!
Friday, July 17, 2009
Before then, I'll have helped Skip with all the usual "start the day" activities. Along with some vacation packing additions ...
Before she gets in the shower, we'll go through her closet to pick out the clothes she'll bring. She'll want to bring more pants and shirts than I want to pack. And then we'll go to the shoes. For someone who doesn't walk, she has an amazing number of shoes, and she'll want to bring more pairs than I want her to bring. (She has already mentioned the shoe selection process as something she wants to do sooner rather than later at least 3 times. I keep deferring it.)
Another pre-vacation ritual is my getting cranky. At some point in the preparations, I'll crank out. It really comes down to a fundamental difference in packing: what Skip wants to bring is greater than what I think is necessary for a vacation. And I don't want to pack it all, schlepp the bags to the destination, unpack them, repack the lot of it (including the clothes never worn during vacation!), etc.
Over the years, we've come to an accommodation. We agree to a set number of pants and shirts, based on the number of days of vacation. It's usually something like 1 pair of pants per vacation day and 1.2 shirts per vacation day. Believe it or not, this results in packing less clothes than if Skip brought everything she wanted!
The challenge on this trip will be getting Skip to recognize that our destination has a washer and dryer, so we can bring less clothes than if we were going to a hotel.
If we can get through the minefield of clothes packing, another possibility for crankiness is the sheer magnitude of things to bring. I think the straw that will break this camel's back will be the request that we bring our bedroom fan. It's big, heavy and awkwardly sized so won't be easy to pack efficiently in the car. We've already had a couple of skirmishes about the necessity of bringing it along. I know in my heart the only way to keep Skip from getting cranky herself on this item is just to pack it up. But I am not convinced it's necessary to have with us, so am continuing to put up some resistance. In the end, though, I know I'll find room for the fan along with the manual wheelchair, the shower chair, the foodstuffs, the dog beds and so on.
A successful pre-trip preparation will be one where I climb into the driver's seat of the car, ready to drive to Maine in happy spirits.
Wish us all luck tomorrow morning!
Wednesday, July 15, 2009
In 1984-85, we were living in the South End section of Boston. Skip was the manager of a local upscale gourmet store, where she also cooked many of their prepared food items. During this time, she began to have a tingling/bruised sensation in her thighs that didn't go away. After a while, this was joined by numbness and tingling in her hands. One of the customers at the gourmet store, who we occasionally socialized with, was a chiropractor. Skip began to see her as a patient in the hopes her ministrations would solve the sensation problems. Despite frequent visits and adjustments, no reduction in the funky sensations occurred.
The sensory symptoms continued but didn't have a significant effect on Skip's ability to work. We left Boston and lived briefly in an apartment in Malden, a small city outside Boston. In 1986, we moved to a two-family house in Medford, occupying the top floor. Skip worked as a cook at a nearby gourmet shop for the first year or so we lived there. Then, in 1988, she got a job working at a very successful restaurant in Cambridge, cooking for the lunch trade. While working there, she began to experience weakness in her left leg, and found herself really dragging, stumbling as she caught a toe on the sidewalk as she walked from the restaurant to her car at the end of the day. This went on for a bit, until she slipped on some water in the kitchen of the restaurant one day. She did something to her neck in the fall and ended up wearing a neck brace (or casting it aside, as often happened) for a bit. Symptoms from her as yet undiagnosed MS continued to build, but were perceived by all of us as caused by pinched nerves, resulting the fall. Without much of a satisfactory resolution to her problems under the care of conventional doctors, she decided to try out the services of a local chiropractor recommended by a friend. This chiro also had an acupuncturist in her practice. Skip worked with both of them to see if her symptoms could be cured.
I have such a silly, vivid memory from that period. We were walking down the stairs from our apartment and looking down at Skip's head, I saw something light blue in her hair. Turned out to be a needle the acupuncturist had forgotten to remove.
Anyway, after a few months with the chiro, she told Skip one day that she could not help her. The chiropractor said she had multiple sclerosis, a brain tumor or a tumor on her spine, and she should be examined by a neurologist! Another vivid memory from that time. I remember being absolutely horrified that the chiropractor would have made such a rash and alarming diagnosis with no basis in fact. At least, at the time, I perceived it was a rash and alarming diagnosis.
Skip's mother had a lot of chronic illnesses and saw docs at Mass General Hospital. From her, we got the name of a neurologist to consult. Skip set up an appointment and we went to see him. She was put through a battery of diagnostic tests including an MRI, evoked response and a spinal tap. The spinal tap occurred the Wednesday before Thanksgiving in 1988. The following day, Thanksgiving, we went out to dinner with Skip's parents and a few other of her family members. I remember she didn't feel all that great. After dinner, we drove down to Cape Cod to spend the remainder of the weekend at my parents' home. By the time we got there, she'd developed a full-blown spinal tap headache which lasted through the night and into part of the next day.
(Interesting, until I wrote out this history, I couldn't remember the year in which Skip was diagnosed. Remembering where we lived and the Thanksgiving spinal tap headache now pinpoints the timing almost exactly.)
Skip met with the neurologist shortly after the spinal tap. He told her the test results indicated she had "demyelinating disease." He said he didn't want to call it MS it was such a mild case. I thought he didn't name it MS because he was a chickenshit and did not want to be the one to deliver the bad news.
The diagnostician referred Skip to another neurologist in the practice. He prescribed a course of oral steroids (prednisone). I remember waking up one weekend day, finding Skip already up. I went out to find what she was up to. She was totally energized. Breakfast was made. She said the theme from "Rocky" was playing in her head. Steroid pumpage!
Symptoms continued to build. Skip really couldn't handle the physical demands of her cooking job and had to quit. She continued to see the neurologist who also referred her to a urologist for her bladder symptoms. She began to use a cane when out and about.
In these early months following her diagnosis, she saw the neurologist with some frequency. Never once did he say something like, "how are dealing with your diagnosis?," "how are you handling the effects of your symptoms in your day-to-day life?" Not once! We were simply muddling through with no guidance or advocacy from her medical providers.
Early in 1989, we moved into our current home. Skip got a job at a nearby gourmet shop, hoping the somewhat less physically demanding job than at the restaurant would be manageable for her. I think she lasted about 2 weeks before she realized she couldn't handle it and had to quit. At my employer, we had some intermittent contract work that would allow her to sit while working. She would drive in with me on the days she was going to work. Even that sit down job eventually proved too demanding, and she stopped working altogether. It probably wasn't much more than a year from time of diagnosis to the time she was no longer able to work.
As you might imagine, Skip had a difficult adjustment from working person to non-working disabled person. Perhaps in a future post, I'll write a bit about those early years.
Monday, July 13, 2009
I'm anticipating a wonderful time will be had by all. We've traveled with 3 of the other 4 women in the group, so know we're compatible travelers. I'm hoping we've emerged from the continuous rain and clouds that has been the dominant weather pattern here since Memorial Day (end of May) until late last week. This way, we'll have most days where we can relax by the water, rather than spend too many days doing rainy day activities such as Wii or shopping.
Skip is planning on getting some time in the water. She hasn't been "swimming" in about 4 years and I think vacillates between excitement and terror at the prospect of getting into the water. Our last experience with it was very fun for her, so I'm hoping it all goes well and she gets to stick her head in the water (she has mask and snorkel purchased) to observe a slice of life in the lake.
One reason I purchased the patient lifter I wrote about recently was to get Skip in and out of the water. Like all new things we attempt, I expect the first time using the patient lifter (with sling) will not go perfectly. I'm hoping we'll have plenty of opportunity while there to perfect the entry/exit from the water. A lot depends upon the lay of the land, the terrain at the water's edge, so we'll have to figure it out when we get there.
We haven't taken a vacation like this in our 27 years together. Before, we've always stayed in hotels or in staterooms on cruise ships. I'm very much looking forward to the more relaxed situation this house will give us. No need to get up and dressed and ready for the day before getting breakfast in some restaurant. Or paying top dollar for room service if things are jelling slowly in the morning. The place we're staying will be an integral part of the vacation, rather than a convenient place to hang our hats so we can head out to shop, gamble or sightsee (the three primary activities while on previous vacations).
I'm sure Skip will get itchy feet and want to head our for some shopping excursions. And, she loves the ocean, so I expect we'll have a drive or two along the coastline; we're only about 30 minutes, I'd estimate, from the ocean. In my limited experience, most Maine beaches I've seen are rocky rather than sandy, so not sure if we'll happen upon a spot with a firm boardwalk where she'll be able to get close to the water in her wheelchair.
I'm not much of a drinker, but when I do drink, I love beer with oomph and black russians. I'm expecting I'll partake of both a bit. I know we'll eat well in Maine. One of our friends was a chef who had her own restaurant for a number of years, so she can be counted on for great meals. But, we won't make her do all the cooking! I'm looking forward to doing some cooking as well. Cooking for an appreciative group, with others to join in the prep, will be a lot of fun.
Skip loves to smoke cigars. We've got a good supply to bring with us. I'm sure she'll have great fun sitting by the water smoking. (I just have to stay upwind.)
I know we'll have some challenges there. How will the bathroom be set up? What will we need to modify in our routines to deal with its layout? How will the patient lifter work for getting Skip out of bed, into the shower and the like? I'm anticipating we'll get all the solutions and new routines worked out the first few days so we can settle into a lovely couple of weeks. It will require some flexibility on our parts, but should payoff with a great dividend: a wonderful and relaxing vacation.
Thursday, July 9, 2009
This was a semi-annual visit, which has been the frequency of visits for a number of years. I hadn't been in a while. Skip's aide took her to the last 2 or 3 appointments. I wanted to go this time because I was interested in sounding out the neurologist on any potential treatments for Skip's growing fatigue and hand weakness. Turns out we were scheduled to see the nurse practioner other than the neuro. I had never met her before; she had joined the clinic since the last time I was there. She clearly specializes in MS care. It was a great visit. I'd guess we spent between 45 minutes and an hour with her, something unheard of for any prior neuro visits.
She started by checking in on Skip's perception of her MS and its progress. We moved on to reviewing her drugs, including her current use of Copaxone and prior use of cytoxan. We then began discussing other treatment options, including methotrexate. She described the treatment, how it's been indicated as useful for hand weakness, possible side effects, the need to establish blood and liver baseline measures in advance of the treatment, the need for monthly testing of blood/liver in the early stages of use. Also, since methotrexate can impact the liver, it's important to minimize the use of pain relievers like tylenol/advil/aleve and alcohol intake (not an issue for Skip, I can't remember the last time she had a drink). Skip decided to begin methotrexate, assuming initial blood tests look okay, and stop Copaxone. Copaxone can be used in conjunction with methotrexate, it's just that the Copaxone is probably doing her no good, so makes sense to stop. The nurse practitioner then concluded the visit by doing some evaluation of Skip's hands, arms, shoulder flexibility (she's having some shoulder pain) and the like.
Then we saw the physical therapist to discuss her shoulder pain, an ankle rolling over (perhaps needing a brace?), hand and trunk weakness. As a result of this PT visit, she's going to have a referral to a physiatrist (doctor who specializes in rehabilitation) to see about having a botox injection in the ankle that's rolling to loosen up the muscles enough to stop the roll. She'll get a PT referral for home visits to set up an exercise program that Skip's aide and I can help her with to work on the hands and trunk. The physical therapist also recommended a pulley set-up that hangs off a door to help give Skip some range of motion exercises for her shoulder.
We then headed over to the hospital's lab to have the blood taken that's required before starting methotrexate and we were done with the visit. Got there about 2:30 and left just before 5.
It was a bit early for dinner, but while we were out, we stopped for a mocha frappucino for Skip at Starbucks and then a pizza to bring home for dinner. Got home, let the two pups out of their crate, had dinner and settled in for the evening.
I'm hopeful the methotrexate will either provide modest improvements to Skip's hands or, at least, give her some stability to stop the slow, inexorable downward progression. I expect she'll be able to start it right after we return home from our vacation in Maine at the end of this month.
A final caveat: everything I said about methotrexate and Copaxone is my recollection and understanding from the conversation. I easily could have heard or remembered something incorrectly.
Wednesday, July 8, 2009
Tuesday, July 7, 2009
I hit the wall today. Really hit it.
Pressure's climbing at work. Have a to do list that doesn't seem to be getting any shorter. Trying to cross a bunch of stuff off of it before vacation begins in a week and a half. On top of that, a small layoff occurred today and there are rumors of more next week (which seems crazy, you'd think they would all occur on the same day to get us past them). Two people that were laid off worked on projects for my client, so we have to staff those roles quickly.
Stuff around the house is pretty much status quo, but I've found my motivation for the regular chores is pretty low. Clothes are sitting in the dryer waiting to be folded, clean dishes aren't getting emptied too quickly.
Sleeping is quirky. Sleeping on the couch for a bit before bed then can't sleep when I get into bed. Have to get up and read or use the computer for a while before I get sleepy enough to drift off for the night.
The capper today came with monsoon-heavy rains (well, at least I assumed they were monsoon-heavy having never experienced monsoon season). Water started coming into the basement through the window well. Minimal water, but a stressor because we had a huge flood last summer, flooding about 1000 square feet downstairs, causing some damage and costing lots of money to have cleaned up.
The problem with the window well took me down the path thinking of possible corrective measures. We have 10 days until vacation in Maine, with only 2 weekend days in those 10. One of those will be a trip to see my parents. Can I get the fix in on the only weekend day available? If not, will my temporary fix hold for 2 weeks while we're gone? And so on ....
It all crashed down on me. I just felt totally and utterly overwhelmed.
Regaining a sense of normalcy this evening. Got the dishwasher emptied, dirty dishes loaded. Folded the clothes in the dryer. Got a couple items crossed off the work to do list. Relaxed a bit. It started raining again and saw with some satisfaction that my temporary solution is working well.
Okay, whining done.
Monday, July 6, 2009
Angry people tend to jump to—and act on—conclusions, and some of those conclusions can be very inaccurate. The first thing to do if you're in a heated discussion is slow down and think through your responses. Don't say the first thing that comes into your head, but slow down and think carefully about what you want to say. At the same time, listen carefully to what the other person is saying and take your time before answering.
Listen, too, to what is underlying the anger. For instance, you like a certain amount of freedom and personal space, and your "significant other" wants more connection and closeness. If he or she starts complaining about your activities, don't retaliate by painting your partner as a jailer, a warden, or an albatross around your neck.
It's natural to get defensive when you're criticized, but don't fight back. Instead, listen to what's underlying the words: the message that this person might feel neglected and unloved. It may take a lot of patient questioning on your part, and it may require some breathing space, but don't let your anger—or a partner's—let a discussion spin out of control. Keeping your cool can keep the situation from becoming a disastrous one.
I often overreact to requests or criticisms. Sunday morning was a good example. When I went into the bedroom to give Skip her first batch of pills for the day (It's the motherlode, more than 20 pills in one mouthful. I honestly have no idea how she takes that many in one gulp.), a request for a "honey do" item rolled right off her lips. Of course, she can't do this stuff herself, she was waiting a bit for me to come in with the pills and while lying there, was thinking she didn't want me to forget to water the plants. Amazingly, I had watered them immediately after she'd asked me to do it the day before, and she either hadn't noticed it had been done or forgotten.
This scenario happens with some frequency. I go in to give her pills, and she asks for something to be done. If you put yourself in Skip's shoes, it's easy how to see how this happens. She's awake, unable to move without my assistance. I am sometimes stretching out the morning time that I have to myself, so she's waiting for me to come in. She's thinking. Sometimes that thinking goes towards what she wants me to do. So, when I walk into the room to give her her pills or get her up for the day, she's got things she wants to tell me right away so she doesn't forget. Trust me, they are never thrilling to my ears!
Sunday morning, when the request for plant watering was the first thing mentioned, I could have reacted by claiming proudly that I'd watered them the day before, so there was one item already checked off the list; instead, I got cranky. I didn't think carefully about what I wanted to say nor listen carefully to what was being asked. I also heard the request as criticism, so got defensive, as the third paragraph in the APA web page alludes to. I have noticed a tendency on my part to react to criticisms defensively, and even to perceive requests as criticisms and so jump right to defensiveness.
This is a good item for me to handle on two fronts. First, I can ask Skip to think more about her delivery when she jumps right to a request when I come in to give her her pills in the a.m. If she eases into it, sort of butters me up, it will work better for me than a request delivered cold. Second, I can try to hear not just the surface but what's under the request so I can respond to it less crankily or defensively.
Friday, July 3, 2009
Slept late, a bit uncharacteristically. Got up and was going through the usual routines. It was when Skip called to get up and I went into the bedroom that the wonderful feelings flooded over me. It wasn't anything out of the ordinary that caused it, just an unpressured moment to appreciate our routines, our great little family unit of 2 dogs and 2 people, and the prospect of 3 days together with no work (long weekend due to Independence Day holiday).
The good feelings continue on. I'm not doing anything special, just enjoying my fellow bloggers, some breakfast, doing laundry, chatting with a great friend who just returned from vacation in Hawaii, making plans for a cookout tomorrow. Skip has an aide coming for a leg massage, I'll be doing a bit of yard work, she'll sit on the patio for a smoke, I'll run a few errands. As I said, nothing special, but I'm anticipating the day with great pleasure. I'm happy.
I'm hoping you're having a wonderful day wherever you are, whatever you're doing.
Thursday, July 2, 2009
When I read this one, and then when I read it again a few more times, it didn't sing to me. I mean, I live 24/7 with one very large, unsolvable problem. But, for the smaller problems in my life, I am a pretty good solver of them. It's something I recognize as a strength, in fact, my ability to find creative solutions to problems at work for my clients, at home for dealing with new MS symptoms and the like.
Sometimes, our anger and frustration are caused by very real and inescapable problems in our lives. Not all anger is misplaced, and often it's a healthy, natural response to these difficulties. There is also a cultural belief that every problem has a solution, and it adds to our frustration to find out that this isn't always the case. The best attitude to bring to such a situation, then, is not to focus on finding the solution, but rather on how you handle and face the problem.
Make a plan, and check your progress along the way. Resolve to give it your best, but also not to punish yourself if an answer doesn't come right away. If you can approach it with your best intentions and efforts and make a serious attempt to face it head-on, you will be less likely to lose patience and fall into all-or-nothing thinking, even if the problem does not get solved right away.
What's the bottom line, then, with this one? Well, not so useful for me. Probably helpful for plenty of other folks, though.