Chapters

I read something recently – some self help touchy feeling thing – that suggested thinking of your life in chapters, if you are stuck on what the next chapter might be.   I think I’ve already done that in my head for years.  But I am still stuck.   I got a little side-tracked on the whole having an incurable disease thing for awhile, but I feel like I have a handle on that (knock wood) at least if it stays under control.  

Still, it might be a fun excercise.   My chapters are as follows: 

Chapter One: Birth to almost 7 yrs. old:  Ritchie Road.  We moved into this house when I was only about 3 months old, so I have no memories prior to that.  I have a lot of memories of the time period, some reinforced by the family photo album.  Many more of them are of  playing with my best friend, the boy next door who was only a couple months younger than me.   I went to first grade in that town, and I have only a few memories of that time.

Chapter Two: I would call this time period “Exile.”  Age 7 – 9.  While we only lived in this small town for three years, many of my childhood memories are of that time period.  I had a best friend there who shared my birthday, but was two years older than I.   Strangely, she lived two doors down, but went to a different school, because of an arbitrary boundary drawn right through our neighborhood.   Happy memories of my childhood, not so happy memories of my parents’ marriage.

Chapter Three:  ”Return from Exile.”  We moved back to the metropolitan area where my mother’s family was.  I started the fifth grade and found that while I was still a child my classmates all thought they were almost teenagers.  We were ten!  This was a difficulty for me, as I was socially not on the same page.    That period of the fifth through ninth grade is sort of a blur of pre-teen angst.

Chapter Four could be considered to start when I started high school.  I was  band nerd, and because I found a boyfriend two years older than I, I was a lot less focused on the cheerleader social set, or should I say, less focused on the fact that I was an outcast from that group.

Chapter Five:  Undergrad years – five of them – at Syracuse University.  That could be another book.

Chapter Six: Grad School.  Four years. University of Wisconsin-Milwaukee.   Ditto.

Chapter Seven:  Moving to the PNW.  Thirteen years here with the ex.

Chapter Eight: The present – Seven more years here, but spent with the SO. 

The thing that jumps right out at me is the 13 years.  Where DID those years go?  That was age 27 – 40 the prime of my life.  I can get really depressed if I think that I “wasted” those years.  Now I’m nearly fifty and sick.   And feeling like I’m running out of time to do all the things I thought I had forever to do.

It would probably be a boring book, eh?

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!

Bunny Ears

Here’s a picture from last weekend’s dinner.  We couldn’t resist buying these adorable ears for the grandkid.  I guess I’ve turned into a typical grandma – showing pictures of my grandkids to anyone who will look.

 Ack.  I didn’t expect that at 47… but life is full of things I didn’t expect!

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?!

Focus

Saturday morning, and I’m here in the office alone.  No distractions, no phones ringing, no e-mails popping up every five minutes.   I should be able to focus on the work that needs to be done.  We were very efficient, getting up and going to the gym, doing errands, and getting back home by 10:30.  Amazing.   Now I just need to get focused on my work, and not on writing blog entries!