Steady State

Steady state, that's what we're in now. We've got our Skip's-wound-is-small-and-healing-slowly routine settled in. It's a bit like being in limbo. The wound isn't all consuming, but it still shapes a lot of our daily lives.

We have our morning routines and our bedtime routines. We know when the nurses and the aids are coming. Every day, I keep Skip up to date about meetings and other work obligations so she knows my schedule. I know where she'll be.

This isn't our ideal. Skip wants to be up more, she wants to get out more, she wants the pain to go away. She's restless and doesn't feel quite human while spending so much time in bed. We both want to get rid of the hospital bed and buy a new bed that we sleep in together. I'd like to get out more and be a bit more engaged with the outside world. I feel lonely and isolated.

We both know this steady state isn't forever. It's working for now while we get the wound healed. We're counting on this state lasting for months, but not years. We'd both hate for this to be our forever state.

Windex

Did you ever see the movie My Big Fat Greek Wedding? In it, the father of the bride, Michael Constantine, uses Windex to cure all manner of minor ailments, especially of the skin (as I recall). At the end of the movie, the groom quickly heals a pimple on the morning of the wedding with Windex, showing his embrace of the bride's kooky family.

Over the last few years, as we've come into contact with lots of nurses and aids, we've found that they all seem to have some product that's their Windex. Of course, the product varies from person to person, but they all have something that is the cure-all. This is especially true with respect to the skin.

The two most popular windexes we've encountered are Aloe Vesta and Calmoseptine, with Calmoseptine the most popular at the moment. Skip's aid is always dabbing it on various spots on her skin to head off any new problems. We love the care and attention that's behind the use of these products to take care of folks like Skip.

May there always be caregivers and their Windex.

Osteo? Probably No and the Vac is Retired

At the wound clinic visit today (those biweekly visits sure do come around fast), the wound vac was officially retired. The wound looked good following the two-week vac holiday, with no concerning slough buildup, so the vac isn't likely to be required again. As I said before, it was a valuable tool for many months, but we won't miss it.

And, we discussed the osteomyelitis. The x-ray proved inconclusive. Skip doesn't really appear to have any significant evidence of infection, so there's no need to get out the big guns (IV antibiotics) to try and kill off something that might not even exist. The docs will keep an eye on her with her biweekly visits to the wound clinic and the wonderful visiting nurses will be able to be an early warning system with their daily visits for dressing changes.

Driving home after the appointment, it was lovely to see all the buds on the trees. We started spring here in New England with horrible weather, experiencing 10" more rain than normal in March. April has been up and down weather-wise, which is typical, but we're definitely experiencing more mild days now than cold. When we got home, Skip and her aid, MW, spent an hour out on the patio enjoying some cigars.

Steve and Bobrobert

(I stole this photo from the picture gallery Steve has set up for friends to post photos.)

It's a small world, this world of bloggers who have MS or are caregivers to someone who has it. When I first started blogging, I was very interested in finding others who walked in my shoes, caring for a spouse or partner with MS. When I found Steve and BR's website, The Wheel of Fortuna, it was like a gift. There were these two folks in Austin, TX struggling with many of the same things Skip and I did day in and day out.

They've shared their lives through postings in word and in video (especially to give BR a voice). We've joined in their hope and frustration with each new round of pain management attempted for BR. We've enjoyed Steve's annual guilty pleasure orgy on his birthday. Personally, I've always enjoyed Steve's comments to my posts here. He writes poems, song lyrics, adds his own experiences in the same vein as my posting, and has helpful advice.

Things have taken a horrible turn for them over the last week. Now, Steve and BR are surrounded by friends and family as BR's body is wracked with an infection that may end him. If you haven't had a chance to stop by their site, please take a moment to check in and send your prayers, hugs and best wishes for them.

NUTs

The May/June 2010 AARP Magazine has an article about Dr. Oz and his 6-month plan for getting healthy. To me, the most interesting month of the 6 was month 4 on managing stress. There's an "Oz Tip" that really resonated with me:

Among the major stressors in our lives are Nagging Unfinished Tasks (NUTs, I call them). Try to identify the NUTs in your life and then resolve to fix them, so they don't become a constant source of anxiety.

This is so true for me, and probably for many other procrastinators as well. I sometimes expend more energy thinking about and stressing about something I'm putting off than it would take just to get the darn thing done. I've understood and acknowledged this about myself for years, but, unfortunately, that didn't result in any behavior changes.

Interestingly, when I read this tip from Dr. Oz, it did result in a behavior change. I got up early on Monday and wrote a document for work that I'd been procrastinating on for a looong time.

Face it, I have enough stress in my life and seeing these NUTs as contributing needlessly to the stress load was just the trigger to prompt action.

Skip and Cranky in the 80s

I recently got inspired to start scanning and posting old family photos to Facebook when I saw an old friend had started this on his Facebook account. I found his photos very interesting, especially the ones within one generation. The older ones, not so much, though probably interesting to his immediate family.

I've pulled out all the old family photos my parents have shared with me. I also began pulling together the photos from my youth and that Skip and I have taken over the years. Although my original intent was to scan family photos from prior generations, I have been drawn to the ones that I'm in or that Skip is in. As usual, I am my own favorite subject!

I thought I'd post some snaps from the 3 decades in which Skip and I have been together, the 80s, 90s and the 00s. Too much for one post, so I'm breaking them up over 3.

* * * * * * *
Skip and I met in August 1981. We began living together two weeks later. We were both 25 when we met. In the 80s, we moved 9 times. Each move was to a different apartment until our final move in 1989 when we moved to the house we live in now. Our apartments were in Boston or surrounding cities. We each had a number of job changes, as well. Skip was a systems analyst, a bartender and bar manager and a chef. In 1989, she retired due to her MS. I was a secretary, student, programmer then consultant.

During most of this decade, Skip's symptoms, if she had any, were minor. She loved to golf, so I learned how to play, though I was never good at it. We played with her father, who also wasn't very good at it. Once, we vacationed with Skip's parents at a golf resort in New Hampshire. We loved to take long weekends at bed and breakfast inns in Vermont and go antiquing. We had a good-sized circle of friends and we loved having them over for small dinner parties where we ate a lot of great food and drank a lot of wine. Skip could drive and was very independent, going out and about on her own with regularity.

This photo of me and the one below of Skip were taken in October 1981, on our first weekend trip to Provincetown, MA. It's on the tip of Cape Cod. Wow, so young!

These photos were taken in our last apartment, probably in 1987. Taken by a photographer who was trying to publish a book of photos featuring gay and lesbian couples. The book was never published. Skip is in her classic attire from that era: polo shirt, v-neck sweater vest, jeans and Reebok sneakers. I can't believe how long my hair was.

For our 7th anniversary, we put together a little dinner party at a gay restaurant in Boston. Our roommate took some lovely photos of us before we all headed out to dinner.

In 1989, at our current home, with our first dachshund, Sadie.

Vac Be Gone!

The Japanese Maple buds are now transforming to leaves!

We had a successful, though not entirely satisfying, visit to the Wound Clinic today. The tunnel remained at the same depth as on the previous two visits. We confirmed the radiologist had read and commented on Skip's x-rays as if we were looking for evidence of osteoporosis rather than osteomyelitis. A nurse in the clinic will speak with the infectious disease doc to have him request another reading so we can find out if there's anything worrisome in the pictures.

The best part of the visit was the removal of the wound vacuum. We're taking a "vac holiday" that may become a vac retirement. From the plastic surgeon's perspective, the value of the vac has diminished, and it's time to move on to another therapy. Also, Skip's skin around the wound is starting to get irritated from the continuous covering with tegaderm. So, they packed the tunnel with an anti-microbial tape, put some gauze on the outside and it was done. We'll still have a nurse come every other day to change the dressing, but it will be much easier and quicker than the changing of the vacuum's sponges and drape.

Skip is quite pleased that she will no longer have to hear the vacuum gurgling 24 hours a day, as it has been for the last 4 months. (At night, our bedroom is alive with white noise from the vac, the air blower for her mattress and a fan. This is good for me to help drown out some of my tinnitus.) It definitely was a valuable tool in the wound healing process, but we're not sad to see it go.

Nothing Definite on the Osteo

I called over to the wound clinic today to find out if the radiologist had read Skip's x-rays from Friday. Apparently, they were read yesterday. Based on what the radiologist reported, there were no fractures or dislocations. Okay, but what about evidence of osteo? No word on that.

Fortunately, tomorrow we have an appointment at the wound clinic with Skip's plastic surgeon so I expect we'll get more information. With luck, the infectious disease doc will have reviewed the x-rays by then and passed on info to either the clinic staff or Skip's surgeon.

Bottom line ... we still don't have a definitive answer. But, we don't have bad news, either.

Spring is Catching On

The Japanese Maple on our patio knows it's safe to send out those buds. Leaves aren't far behind.

Wow, what a wonderful weekend we had here. The weather was sunny, highs of mid to high 70s F, just perfect.

Some friends invited us over for an Easter dinner so I ended up making our ham dinner on Saturday. Skip has been watching a TON of the Food Network lately and had seen a couple of chefs prepare asparagus by grilling it on the stove with just olive oil, salt and pepper. I did that with our asparagus and I don't think I'll cook them any other way again. I love asparagus and this was easily the best version of it I've ever had.

Great to visit with our friends. After dinner, we sat out on their deck and had a relaxed chit-chat until the early evening. By then, it had cooled off quite a bit so I was getting chilly. And, we needed to get Skip back in bed after being up and about for 6 hours.

I got us all settled in time to watch the Red Sox take on the Yankees in their home opener. I went to sleep expecting the Sox' first game would end up an L as they were behind 5-1 when I drifted off halfway through. I found this morning that they had rallied and ended up winning. Good way to start the season.

Osteo Again?

There are some trends emerging for Skip that may indicate osteomyelitis (bone infection) is back or was never really eradicated while in the hospital/rehab. At Skip's last wound care center visit, the tunnel in her wound, which is really the only significant part left, had actually lengthened, increasing in length by 20% from the visit 2 weeks prior. This tunnel is what had exposed the bone to infection in the first place, as I understand it. The fact that it's been resistant to shrinkage and now has grown could be a sign of infection. In addition, she had a blood test that indicates she does have an infection somewhere. Yesterday, I took her to the hospital to have an x-ray. The infectious disease doc that we saw at the wound clinic ordered this. He said an MRI can show evidence of a bone infection for a long time after it's been wiped out; the x-ray will show if there's been bone loss. I suspect he'll read the x-ray on Monday and I hope we hear something definitive right away.

The prospect of osteo has Skip worried. I don't think I'd characterize how I feel as worried, but I am a bit concerned about what's required to wipe it out if the diagnosis is osteomyelitis and how that will affect our current, stable status. We'd be looking at another month-long course of IV antibiotics. Medicare, for some unfathomable reason, does not pay for home infusion! How misguided is that? What, they want to send someone like Skip who only needs IV antibiotics to an acute rehab hospital, pay for the care there, expose her to other infections where instead she could be treated at home with me doing most of the IV administration? I understand there are some ways to work around this Medicare constraint, but we'll have to cross that bridge when we get to it.

So let's assume we can do the IV at home. She'd have to have a PICC line inserted, and I expect that would be done in a fairly sterile hospital setting. Then, someone would have to train me on the infusion approach, including troubleshooting and when to determine the problem can't be solved by me and I need to get a pro in. Then, I presume she'd have to get the drugs administered twice a day for 28 days (this was the course used at the hospital). I expect there'd be complications, as she had them in rehab. The PICC line had to be replaced twice, or even three times, during the 4 week period.

Part of me is sort of interested in learning how to do this as I expect most of the time, it's very straightforward to administer IV's at home. Another part, though, is concerned about how much of a time eater this could be. We'll definitely have to work out a schedule of administration that is outside of work hours, which shouldn't be difficult.

Well, perhaps all this ruminating by me is unnecessary. Maybe the doc will call on Monday and say all is well. But as a character in a favorite childhood book, The Phantom Toolbooth, said: "expect the unexpected and the unexpected never happens."