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.

 

 

 

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!

 

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.

 

Chemo and Harps

Today I’m back at the hospital for what is supposed to be the last chemo treatment.  It is stronger by about 30% than the previous ones were, with the theory that the relapse last time was not because of the chemo but because it wasn’t strong enough to supress my immune system.

I have the good, smart, with-it nurse this time, who understood that she could run the chemo drug simultaneously with the needed IV fluids, rather than one at a time, so I should be out of here by 2ish maybe.  Instead of 5ish.  That’s a good thing.

We (we being my various doctors and I) have concluded that the diagnosis is Lupus.  I’m not sure what happened to make them become more certain on this, I think it might just have been the two of them conversing.  Anyway, I’m fine with that, I guess.  As I told them, it’s really just a label, and doesn’t change how the disease behaves, or how we are treating it, so whatever.  

We (SO and I) went to the Big City for a seminar on roofing.  Yeah – we know how to whoop it up, don’t we?  I think he only went because he was concerned about me driving that far.   It’s good to have someone concerned about me, but I think I would have done fine.  I tested his patience by asking to stop at the local harp store.  Not something available around here.  I heard that they made beautiful harps, and I was not disappointed.  And the sound that comes out of the beautiful harps is beautiful as well.   The basic models start around $995, so I won’t be buying one anytime soon.   But I did find out that their rental rates are very reasonable – for the same amt. that I am paying my teacher now for the Harpsicle I could have one of the lower end beautiful harps.    But what I really want are more strings.  The Harpsicle’s lowest string is C below middle C.  You can’t play too much bass in one octave.

But I bought some books of Celtic music and some finger training excercises.  I need to learn to play much better before I even think of trekking back there for a rental.   I have such a habit of taking up hobbies, then abandoning them.  But it is very enjoyable and relaxing.

Speaking of relaxing, I’ve been trying to read more about Lupus, and am learning that stress is a MAJOR factor, even more specifically for Lupus than for MS.  Talking to the nurse here, she told me her sister has Lupus, and found that she HAD to get out of her stressful job, and was much better when she did.  The problem for me is that the cause/effect cycle is not so obvious.  If, like the sister, I was able to correlate increased joint pain or rashes with stressful periods, I could see what the actual trigger is.   My two most recent flares occured a week after I came back from vacation.  So is the trigger the stress of getting ready to go?  Or the coming back?  Or the vacation itself.   I have to believe that it is the first – and that there is a 2-3 week lag between being stressed, the immune reaction, the attack on the spinal cord, and then the symptoms ocurring.

It has finally been settled that I will see the neuro. when I get to JH, and that the rheumatologist will just be reviewing my file, as it turns out that he is going on vacation when I am there.   I can’t even begin to express how ticked off I am about that.   And I was very stressed, last Monday, when I found out.  So we will see if that little stress fest causes a flare up.  Jerk.  I’ll leave it at that.

Duh! Whatever I Want!

I worked yesterday, and all last weekend, so I have given myself permission to do “whatever I want” today.  Are there any Napoleon Dynamite fans out there?  There is one line where someone says, “What are you going to do today Napoleon?” and he replies, “Duh!  Whatever I want!”  I always thing of that when I ask SO what he wants to do today… Anyway…

My health has been stable for a month or so.  I still have not gotten back quite as much strength as I had in February, but close.  I do PT twice a week and try to go to the gym at least once, plus do a half-assed run thru my excercises before bed each night.  But my leg just doesn’t seem to get stronger. (My opinion, PT thinks I’m doing well).  If there is permanent nerve damage, it might not.  But I am walking pretty well, and – knocking on wood -(all these old superstitions from my mother) hoping it will continue thru our DC trip and I will actually be able to walk around to some of the tourist attractions.

Speaking of that -  I made a hotel reservation finally for the 16 thru 20th of April.  That will give me a couple days to spend at my brothers as well as hang out with my friends. Still haven’t heard back from the doc, and was too busy to pester him last week.     Have not decided if I should go to Ohio before or after the DC visit.  We are going to be screwed on airfares, now, anyway. 

The latest boring medical news is that the rheumatologist here in town consulted with another doc. at the university medical center and he said that the chemo could not have cause a relapse, and that the amounts she was giving me were possibly too conservative, and he suggested that we do one more round at a higher dose.  I have already had five rounds, and the plan was for six, so I figure what the hell.  The previous doses did not give me any really bad side effects, just a couple days of feeling exhausted.  So I’m doing it again on Friday.

SO is busy today building me a new flower/strawberry bed in the backyard.   I am still amazed that I can suggest a project and he will actually do it.   The ex never ever did anything that I wanted without much begging and only if the house was about to fall down.  

We had an old cherry tree, which was 90% dead, but had this great twisted gnarled trunk.  SO wanted to cut it down but I couldn’t stand to give it up, so he took all the small branches off and left the trunk.  I am going to grow wisteria on it.  So now he is making a bed around the base of the trunk to plant the wisteria and make it easier to not have to mow around the base of the tree. 

And here I am goofing off on the internet.   Hey – “Whatever I want!” right?  Duh!

It’s All in my Head

I’ve been working like crazy.  I have a lot of things running through my head that I’d like to write about, but I’ve been too busy to stop and write them down.  To date I have survived three crazy deadlines, but still have two more to go.  By the end of next week all should be sort of caught up.   

Then I have to go for another chemo treatment.  Since I had another relapse after the last one, I’d thought the medical consensus was that it wasn’t working.  The rheumatologist called me yesterday and said she’d consulted with another rheum. at the University and he said maybe the chemo was to conservative and that’s why I had the relapse.  So the new plan is to hit me with another, stronger dose of chemo instead.  I can’t say I’m really excited, but I did agree to it.  I like walking.  The last doses didn’t have many side effects – I was weak and tired for a couple days after – so hopefully this won’t be too terrible.  But I did schedule it for Friday again, so I can waste a weekend rather than take two more days off work.

Speaking of wasting weekends – it’s five pm on Saturday and I’ve been in the office since ten.     We did have a nice leasurely time waking up this morning, followed breakfast without rushing and a romp in the yard with Big Dog.    But I have SO much work to do before this project goes out to bid – Monday morning.  Ack.   I’m going to take some stuff home, hope that SO has dinner going – then come back to the office as long as I can stay awake and relatively pain-free.

 The best news of this week was that a major project came in under budget.  We were really sweating it because it is a very public project and there has been a lot of public controversy – in the City Council and the newspapers about how much the city should or should not spend for this building.  Luckily for us, construction activity has slowed way down, and contractors are worried about having enough work, so we had eight contractors all feeling very competitive.   And even better than the low price was the fact that it came from a contractor that I really respect and enjoy working with, and I know he didn’t bid low with the intent of screwing us later.   I felt like dancing when that number came in!

The only other news of note lately has been that the big important doctors back east that I had intended to consult with in April are having scheduling issues.  I’m still going on the trip, since several friends have already planned to meet up there – based on my trip!  Just don’t know if the medical part is going to work out as planned.  Sigh.  Why does my life seem so complicated?!

Friday Frenzy

I’m in that “Stop the world I want to get off” mode this week.   I was having some serious hang-over problems from the sleeping pills I was taking in order to counteract the insomnia that comes with mass doses of steroids.    The first half of the week was lost in a fog of staring into space waiting for my brain to reboot.

So I’m done with the steroids as of today, and the relapse was halted fairly quickly, so that was good.  But physically I think I’m back to where I was a month ago, maybe.   No cane or crutches or ankle brace, but still walking with a pronounced limp and foot drop. 

Enough medical crap, really.   Being sick is my second full-time job.

The workload  in my real full time job has exploded exponentially.  I thought I was getting things pared down to a manageable level, but suddenly there are ten projects all with deadlines in the next couple weeks.   I have NO idea how I got into this.  I was feeling like I wasn’t really carrying my share of the load around here, so I took on whatever new things came my way – and also ended up taking on some “helper” roles on projects that one of my partners was overloaded with.   Net result is I will be working this weekend, and working my butt off all next week.

The step-kids and step-granddaughter (Will I ever get used to just saying “my granddaughter?”  Probably not.) are coming up for a visit Saturday afternoon and going out to dinner to celebrate SO’s birthday and their anniversary, which is the same date.   I have to get him a present before his real birthday which is next week.  Yikes!

When I got home last night, his ski clothes were laid out ready to go somewhere.  What a surprise that was.   In the seven years we’ve been together, he’s never been skiing without me.  He doesn’t really have close friends of any sort, so I was surprised that he had made plans to go with a guy he used to work with.    I am always encouraging him to do more  social things, more fun things, not just always grinding away on errands, projects, chores and to-do lists.     But I still have to admit that it stung a bit to have him going skiing, when I have not physically been able to go this year.

I found a lot of unreasonable (?) resentment bubbling up, along the lines of, “I put off having a life for years while you were too busy working, and now that I’m sick and can’t do things, you’re not working and going off and having fun.”   I kept that to myself, of course.

I was the number-one cheerleader encouraging him to get out of the rat race and have a life for awhile.  It’s certainly not his fault that my body pooped out the same time he quit his job.  And it was lucky he did quit at that particular time, because I needed to be taken care of – especially in the chauffeuring department.

Ah – relationships!    

Not the end of the world

Things are looking better.  The setback seemed devastating last week, but quick intervention with massive-dose steroids seemed to keep it from getting too bad.  My walking ability isn’t quite back to where it was before the flare-up, but it could be worse.  I ditched the cane on Friday, and the big ankle brace yesterday.  I’m just using a black elastic Ace thingy. 

I did however, spend most of yesterday in a stupor.  Some sort of drug interaction, complicated by having several glasses of wine at a fundraiser Saturday night.   I’ve had no trouble before, and even thought I had scaled back on the pain prescription,  but ended up vegging unable to do anything but stare at the tv most of Sunday.   Before you freak out about painkillers and alcohol, I should explain what I call “pain pills” are actually an anti-seizure type drug used to treat neuropathic pain.  One that is suddenly, commonly being advertised as  useful in treatment of fibromyalgia pain. 

So -whatever.  Health, blah blah blah.

The SO and I have been trying to come to terms with how to clean up the landscaping.  My approach is the messy, overgrown English Garden look.   He prefers concrete sidewalks and weedkiller.    I was an avid gardener for the first 10 years or so that I lived in this house (1989-1999).    Since then I’ve sort of let it go downhill.   The bones of the first decade survive, but things were getting mighty overgrown.    Saturday I gave him the ok to remove some huge rosemary shrubs that had taken over the already minimal space between garden and cars.  

Since he has to haul the trash cans out to the road via this path every Monday morning, I didn’t feel I could continue to insist that he get scratched in the legs and poked in the eye every time.

So the negotiations will continue. 

I really am grateful to have him there, doing all this for me. (us).  After ten years of an alcoholic who refused to even take out the trash I have not become ungrateful.