Crabby

I’m sort of tired and cranky today so watch out. 

I am also suspecting a possible disease flare up in the works.  It happens every three to four months, and it’s been 3.5 mos. since the flare up in February.  And I almost always feel especially good right before it all goes to hell again.  I think I started being wary as soon as I realized that.  Then yesterday I was overly achy in the morning and overly tired by 5 pm.   This morning my right leg feels a little more intensely numb than usual, and I think I am loosing proprioception in my foot.  (This is an unusual and bizarre sensation where I can’t tell where in space my foot is, and have to look down or kick it against something to “find” it.) The pain is a little more intense than usual, and making it’s way around my back (usually it’s mostly in the front).   I also feel some strange creeping sensations on my face now and then.  Exactly like when you say, “That gives me the creeps” and your skin crawls.

I’m still hoping against hope (now I know what that phrase really means) that it’s just a minor increase in symptoms rather than a re-inflammation of the spinal cord lesion.  But I brought a bottle of prednisone to work with me just in case.   It could be that I just overdid it with long workouts at the gym Sunday and Monday.  On top of long hours of yard work.  It could be that I’ve switched from amitriptyline to nortriptyline as my second line of pain defense after Lyrica.  Maybe it’s not working so well.  Maybe it takes time to build up.  Maybe it’s that I cut the acyclovir down to one a day instead of two. 

Then again maybe it’s my whacked out immune system mounting another full frontal assault on my spinal cord and I will soon be back to the land of IV infusion, solumedrol psychosis, canes, crutches, and ankle braces.   All I really want in my life is some predictability, and that seems to be the only thing I can’t have.   That and my health.

Whah.   Anyway. 

I went to another Business Partner Breakfast this morning at 7:30.  I’m sick of everything I do being fund raising and schmoozing, either trying to get money out of people or people trying to get money out of me.  All of this fund raising for a few thousand paltry dollars for our life altering medical causes and our various social causes.  And meanwhile billions and trillions of our tax dollars are being poured down a rat hole of waste and destruction in an untenable situation we now can’t conscionably extract ourselves from. 

There, I guess you know where I stand on THAT.

 

 

 

Long Weekend Report

It was a satisfying weekend.  That is to say I think we achieved the appropriate mixture of accomplishing things and goofing off.  Saturday was the best weather and we spent the best part of the day pouring a concrete slab for the new hot tub.  This whole hot tub was a little impulsive on my part.  I only obsessively researched and shopped for about two weeks, not my usual months of indecision.   It’s a pretty big purchase, and I figured I’d better move ahead before SO changed his mind.  The deal was that if I’d agree to give up the jetted tub in the bathroom remodel he’d agree to a hot tub instead. 

Of course I can buy whatever I want, but I wanted it to be an “us” thing not a “me” thing.  So I made the decision on which one I liked best mid-last week.  Friday he schlepped home 45 sacks of concrete and rented a mixer (electric, thank God!).  Saturday we mixed and poured for hours.   It came out very nice, though I’m nervous about the size.   He insisted on pouring it to exactly the dimensions of the tub, so we can put pavers or some other finish right up to the edge.  I’m worried it’ll be a smidge to small and the tub won’t be properly supported.   It is going to be delivered Thursday or Friday I guess, and then SO’s son the electrician-in-training is going to come and help wire it. 

Sunday we ran around doing the usual errands – I splurged on a couple bathroom design books at the mega-home store.  WHich are doing nothing but giving me expensive ideas.   No, actually, it’s good because I saw a design that featured the dark wood cabinets with white carrara marble countertops, and decided I didn’t like it after all.  Now I’m back to thinking what cabinets, perhaps….

We got more tomato and strawberry plants.   SO planted cukes, beans, lettuce, carrots, and zucchini last week.  Now we just need sun.

We also went to the big community festival/race finish line event here in town.  It was a complete zoo of crowds, and even though we took the shuttle bus instead of driving, I ended up having to walk about ten blocks down hill, (and then back up) which was sort of slow going with my gimpy leg the way it is.  But I got gelato at the end.  yay.

Monday was spent working around the house and garden.  I worked out at the gym both Sunday and Monday, and between that and the gardening I was sore this morning.  Soreness is sort of strange now – everything hurts in different ways, since the nerves are so confused.  

The frustrating thing for me right now is trying to loose weight.  Have I written this before? Sorry.  CRS.   The neuro. changed one of my pain meds – the one I was on is notorious for causing weight gain.  I have been excercising five times a week.  I tried to cut way back on alcohol, deserts, bread, etc.   Yet the scale insists I’m still 142 lbs.  For the past four months I’ve been no higher than 145, no lower than 139.   I get no sympathy because this isn’t a terrible weight to be, I’m still comfortably a size 8.  It’s just that I’ve never been this heavy, I’ve always been around 125-130 and that is the size all my clothes are.  That is the size I want to be.     And no, it’s not coming back as muscle -there are still big fat deposits in places they don’t belong.  My legs stick to each other when I’m sleeping, my belly prevents zipping pants that have been big for years… blah blah blah.    I have never had a lot of sympathy for overweight people.  I guess this is karma.

 

Gratitude

I’ve been a little cranky lately and focused on how bad I feel, how much I hurt, what I can’t do.  But doctors and therapist continue to say I’m doing great.  It’s all perspective, I guess.  I want to be back to my old normal.  They want me to adjust to a new normal.  I am still improving, and I am grateful for that.  I was able to run for maybe 30 seconds on the treadmill.  That could be depressing, but as it’s the most I’ve been able to run since September, I’m glad for it. 

I can walk up and down the stairs without clinging to the handrail, though I like it to be close, just in case.  I can walk through the office, or a store or down the street almost normally, although somewhat slowly.   I truly am grateful that I’m not permanently using a cane, or worse, in a wheelchair. 

I am grateful, really.   I just want to run again.

I was never a great runner, but I has such high  hopes. 

First Nice Day in Ever

Everyone here has a major attack of spring fever.  After Monday, Tuesday and Wednesday, when it literally rained all day and all night,  the long-promised heat wave is finally here.  It’s Friday, It’s Spring, it’s 80 plus degrees, and it’s Bike to Work Day.  I drove to the gym at 7, drove home, changed, drove to the doctor’s office and the lab, then home again in time to actually ride my bike to work by 10:30.   I was happy to be able to do it, although I got passed by a couple “real” bikers.

Since I was 2-1/2 hours late, I can’t blame the employees for bailing out early, or not showing up at all, as they have already started to do.  I have a hair appointment at 4:15, so I’m really not in a position to say anything.  But I’m going to be looking at time sheets Monday morning to see who actually was honest about it.  I don’t mind if they go enjoy the sunshine, but not at my (our) (the company’s) expense.   And if there’s no one here to answer the phone but me all afternoon, I’ll probably be pretty crabby about that.  

Especially if the afternoon pain routine continues.  I saw the neuro. this morning and she says I am at the maximum dosage for my main pain med, Lyrica.  But she suggested a change and increase in dosage of the other one I take for pain, which is actually an antidepressant.   Apparently antidepressants are known to help with neuropathic pain.  Or else they just make you so happy you don’t care so much.  I dunno.  Whatever works.  Trying to enjoy life while in constant pain sort of sucks.

Tomorrow is supposed to be beautiful as well, so I hope I will have the energy and enthusiasm to work on planting up some annuals in the pots on the deck.  And taking the dog to the beach.  And shopping for a hot tub.   First the SO was all gung-ho on getting the tub, now he’s starting to think that we should do the bathroom remodel first, since the tub will sort of be in the way for getting materials to the bathroom area.   Logical to wait, but I want it naaaaayyyy  owwwww.  Wah.

Exhausted

This week has seen more than the usual level of pain and exhaustion.  Which is not good.  Especially since the work load has been lighter than usual, and I’ve not had any evening meetings, or any stressful situations.    It could be just a bad week.  It could be side effects of the new drugs.  It could be a new flare-up.  Who knows?   I know an hour ago I felt like I was too tired to make it through the last hour of sitting here at my desk.   Somehow I did, and now I’m going home.  I see the neurologist tomorrow morning.  She may have some thoughts on pain management.  Probably not, but I’ll hope.

The other think I’ve noted in the 12 days since starting the new drug is that I am much more depressed and cranky than usual.   Yippee. 

Who I am

I’ve been working on my “about” page, and it’s turned out to be more challenging than I expected.  I wanted to strike a balance between my health issues and the rest of my life.  I started this blog saying I didn’t want it to be all about health issues.  But health issues seem to occupy most of my inner monologue.  I still spend a lot of time thinking about how to describe my symptoms to some faceless person who might actually care about how it feels, but I’m not sure why.   Not sure why I do it, and not sure why someone would care.  

I probably need to work on convincing the inner monologue to focus on something else.  When the relationship with the ex got really bad, I recall that his faults, his slights, and his abuses seemed to occupy all my thoughts.  That was clearly not healthy.    Then the new relationship with SO.  A much happier topic, but I still seemed to be a little obsessive about it.    We planned trips, traveled, hiked, canoed, kayaked.  In retrospect those years - 2001 – 2003 were probably the best of my life to date. 

When my mom got sick, then died in 2004, that period of time was occupied with stress and grief.  In 2006 I was getting past that, starting to look around me and say, “what’s next?”  To look for a new challenge or goal or focus of some sort.  Then the TM hit.  It’s been two years now and I’ve done everything I can to be sure I’m getting the best treatment.  I have several options for pain relief, and others that can be tried if the current ones fail.  I have a great physical therapist and am working out at the gym three days a week in addition to the two days of therapy.  I’m trying (completely unsuccessfully so far) to loose the extra 15 pounds that the medication and inactivity have piled on me.

So it’s time, again, to refocus.  But until I can get my head out of the “disease, pain, and illness” place I don’t think that will happen.  So I will continue to blog about it until I’ve gotten it out of my system.  After all – it’s my party and I can cry if I want to!

 

Slacking

In the seven work days since I’ve been back from my trip I have probably put in about seven useful hours and 40 hours of puttering, surfing, or just plain aimless wandering. This is a very typical pattern with me. I only respond to crises, only know how to work when there are deadlines hanging over my head, with huge painful consequences for not meeting them. There are things that I can and should do right now. I need to work on the College projects, even though other people are drawing them, I am responsible for the paperwork side of things. I’ve been asked to work on designs for more small, affordable houses that can possibly be factory built. This should be fun. But I’ve not been motivated to start.

Instead I have worked on reorganizing the 450 images in my Webshots directory according to subject matter and location. Yeah. I’m nuts. I just feel like doing mindless crap. With even the smallest challenge I begin to feel stressed and overwhelmed. I guess I just need some down time. But I can’t keep getting it while I’m on the clock at work.

I’ve been trying to wrap up the details of my mom’s accounts. And there are penalties and tax consequences for having left them sit so long. I don’t really know WHAT the consequences are because I get conflicting information from the bank that had her money, the large investment house where I want to move it, and my personal tax accountant. Most disturbing is that he doesn’t seem to have a clue. Very worrisome. I guess I’ll just deposit the money and see what the IRS has to say about it. Should be interesting. But that mess is now down to one account that my brother has to still close out, as it was in his name. Then we can total up the money and split it. Maybe we can just do it anyway, and assume he’ll keep what he gets from that account. We will still have the house to try to sell. But there is no point in that right now, either. The real estate market in Ohio is not exactly hot.

Well, I’d better get myself in the shower. I have therapy in less than an hour.

Putting Myself First

I never thought I had a problem with this concept.  I’ve always felt fairly selfish, actually.  I’m not a single mom with two kids killing myself working two jobs just to stay ahead of the bills.  I pretty much do what I want, when I want to.    But with my current need to rehab my leg, I’ve found that I don’t “have time” to exercise as much as I would like.    Trying to get to work by 8:00 and coming home at 5:30 was making it impossible.  I was just too tired after work to do anything consistently.

Since I have physical therapy every Monday and Wednesday morning anyway, I decided to try to work out at the gym on Tuesdays and Fridays before work.  This means rolling out of the sack by 6:30, getting there by 7:00 for a one-hour stint.  I can still get to work before nine, which is when my partners seem to wander in anyway.

It means I will have to work until 6, take a shorter lunch, make up hours on evenings and weekends, or go to less than full time salary.  I really hate to take a salary cut, because I feel like I’m the only one being honest, while my partners, or at least one of them, is getting paid to read the newspaper until 6 pm.  But as SO said, I have to do what I feel is right. 

This is only the second week of this regime, so it’s too early to say whether I’ll have any luck sticking to it, but I have to try.  I am disgusted with the fat I see on my body, and frustrated with the slowness of the rehab process.  I still limp when I try to walk at normal speeds, and as far as running – I can gimp down the hallway for a bout 40 feet but only in the most tortured and twisted looking way.   But it’s something.   The PT encourages me to be patient, saying that “it takes a long time.”  But in my mind it’s BEEN a long time.

 

Dismantling the Past

In a few weeks it will have been four years since my mom died.  She and my dad were divorced in the late ’80’s so she lived alone.  Although he remarried, my dad still checked up on mom frequently and helped take care of the little things around the house that needed doing.

Mom liked decorating and had bought nice new furniture for the family room and living room over the years since we left, but she never changed our rooms very much.  When I visited, it was always like a flash back to my childhood.  It didn’t help that the radio stations in Ohio all seem to play nothing but 70’s hits.    Most of the year the house probably felt pretty empty with just her rattling around where there used to be an active family of four, and later a college student (my brother) and his buddies studying, eating pizza, and drinking beer around the dining room table. 

But at least once a year, at Christmas we both tried to get back there for at least a few days of family time.  Being on the west coast, I usually stayed a week at a time.   Home was always “home.”  Mom always made sure there were fresh baked brownies waiting for me.  The house was decorated, the meals planned, all the old favorites were cooked.  

Now it’s just a house, with a lot of stuff that someone needs to do something with.  My first visit back there last year was hard.  When I arrived it was “home” but by the time I left it was just a house with boxes of stuff piled everywhere.   This visit my brother came as well.  It was his first time back, but he didn’t seem too overwhelmed.  It just took him four years.  We knew that he was going to take the grandfather clock, so we packed that up.  Then we tried to divide up the Christmas ornaments.  There were boxes and boxes of them, but it seemed like we were not finding all the “special” ones.   I guess that they were more special one in our imagination, because I’ve been over every inch of that house, through every smelly moldy box in the basement, and have not found any more ornaments. 

At least now I know the scope of what I have to deal with.

 

Back in the Saddle

I’ve been back from the trip back east for almost a week, but the time and the inspiration to write have not occurred concurrently.  Over the course of a typical day I think of at least three or four things I want to write about.  By the time I get here and have a free moment to write, I’ve forgotten them all.   I guess I’ll have to start scribbling notes on scraps of paper like some Gothic madwoman.   I don’t kid myself that what I write is all that fascinating to others,  I mostly do this out of my own need to record what’s going on in my life. 

I had a few of the little pink lockable diaries as a kid, but never was very consistent in my writing there.  When I started college and was living on my own I no longer had to keep the diary hidden from mom, so I filled several spiral notebooks with young adult angst.   Later, when living with the Ex, I again felt the need to hide my writing, and finally to stop altogether when it became apparent he was snooping through even the well-hidden notebooks.   After I was free of him, I started journaling again in expensive little blank books that I treated myself to.  Since SO has moved in, I do that less and less.  It’s not that I don’t trust him, just that I feel strange writing when he’s around.  So I started doing this instead.

The trip back east was good.  I spent quality time with my dad and my brother, as well as my “imaginary friends.” (That’s what the Ex used to call them, as if they didn’t count since we mostly connected by e-mail and they couldn’t sit around the bar drinking with him.)  We did all of the touristy DC things: Mt. Vernon, Arlington Cemetery, the war memorials (Vietnam, Korean, and WWII) the new Museum of the American Indian (very interesting) and the Smithsonian Natural History museum (very crowded).  I’d been to the Holocaust museum before, and couldn’t convince SO that it was worth being depressed, so we didn’t do that.   We made a pilgrimage to the Lincoln Memorial, which is always my favorite for some reason.  We went to the National Archives building.   This required a 90 minute wait in the hot sun, but it was worth it.  Seeing the actual Declaration of Independence, and the original Constitution  and Bill of Rights was awesome in the original sense of the word.  It brought tears to my eyes to have all that history right in front of me.

 So that’s the first half of the trip.  The second half, getting started on dismantling mom’s house, has occupied my mind since being back, but I’m not sure where I will start with writing about it.  Sadness, relief, frustration.  Etc.  Maybe tomorrow.