Oct 29: Last blast to anonymous, + more!

'Anonymous': read the comment on my last posting.  It sums up things much better than I did, and also justifies why this has become my major form of communication with people.

THANK YOU Deneen, for coming to my defense and explaining my postings importance from another perspective. 

THANK YOU also to my cousin for her immediate response, below anonymous'.

I'm fairly certain of the identity of the person.  I briefly considered contacting her personally and reaming her, but decided she wasn't worth my time or energy.   

Enough said.

Glad you are still around, Deneen, you hadn't responded in a while and I thought you might have stopped checking in during the long periods when I stopped writing as there wasn't much to say.

Thanks to all who comment, because it keeps me 'honest' and reminds me that my ability to express myself can help others.  Putting some of these writings, some of my essays and other things into a formal book format and attempting to submit to publishers is in the top three things I'm planning on doing now that I'll be on disability and not devoting all my time and energy to work. 

FYI, the other two things are cleaning out, sorting and disposing of the enormous amount of stuff here and expand my social life, most notably with the Time Bank here in Phoenixville which I've longed to get involved in since I moved here.  Cleaning out the stuff has a cross-over benefit that if I can have people over here it allows more socializing as well.  At least for those who don't have cat allergies!

Moving on to something more positive...... 

Over the years there have not been a lot of patients to whom I have talked about my illness, unless it seemed appropriate.  There isn't a good way to tell patients that I'm leaving without getting into an explanation, but there have been a few that I have told in the last couple of weeks that it's been public knowledge.  (Actually managed to keep it quiet until just two weeks ago because I just didn't feel like coping with the inevitable questions and such.)

Of total surprise was what happened yesterday.  Barbara, a long time patient with a cardiac history which is about as bad as mine but in a different way, had her stress test a couple weeks ago.  I told her of my leaving before it was public knowledge.  She was upset, but understood how challenging it's been physically.  Yesterday she came to the office with a gift for me: a beautiful prayer shawl that she personally made for me.  She included a note, also explaining that it was a specific pattern and stitch, had a Celtic background and had to be made for someone else, not yourself.  It was taught to her by her mother and grandmother, and she only has made one before, saying that gave me an idea of how special I am to her.  The enclosed poem is this:

'This has been made for you, a prayer within each stitch.
A prayer for three wishes to you: Hope, Love & Happiness.
Please remember that with each row added.
Kind thoughts have been added.
May its weight be light to hug you just right,
The weight light so that your burdens be light.
May its warmth keep you warm both day and night.'

Probably won't come as a surprise that I was crying even before reading the poem!  Beth had given me a 'generic' prayer shawl before the 3rd surgery, which had been made by members of her church. I didn't keep it out all time, for fear of cat claw destruction, but would wrap myself in it frequently and feel 'hugged'.  When Martha was deteriorating I took it to her church and asked one of the deacons to 'infuse' it during one of their services with prayers from people who loved Martha.  She wore it a lot in the last weeks.  But after her death John apparently just told the staff to dispose of everything, never considering the emotional value.  I've thought of it over the years, wished at times for its presence and what it represented.  So having Barbara make one for me personally (and in a beautiful blue-purple color that is a favorite of mine!) was beyond special, it really filled a void.  And this one was made just for me, so I'm keeping it!

Exhausted from yesterday, have accomplished a few things.  Currently waiting for my handyman Nelson to come over because I'm hearing dripping when the tenant uses water upstairs.  Yup.  Just what I want to deal with.  But, obviously, can't be ignored.  Bracing myself for my nice new closet to have to be ripped out for pipes to be replaced/repaired. 

Only two more days of work to struggle through.......

Thanks to all for checking in, and please leave comments so I know you're still reading!   Laurie

Oct 26: Only one week to go!

Late Saturday night.  Got a lot accomplished today, made easier by the change in medications from the new rheumatologist.  I was nauseous every day last week, using a lot of ginger with mixed results.  Took a decreased dose of the methotrexate, back down to 15 mg last night, increased the folic acid and didn't feel nearly as bad.  Went to farmer's market briefly, picked up prescriptions after walking to the pharmacy, cleared and coped with a large part of the stuff on the kitchen table and finally went through the large box of mail that had accumulated (junk stuff and magazines--I can hear the trees screaming!). 

Barely got through last week, pushed through with knowledge it was the last time I'll ever have to work that much again.  I've got mixed feelings about leaving from an emotional (and financial!) standpoint, but certainly not from a physical one.  Such a relief.

Have to start the process for getting ready for sleep now as must get up early to get to BuxMont as I'm Worship Associate so have to be at both services.  Then AmyBeth is coming over to help; I've now got a list going so there is no hesitation if someone says 'Can I help with anything?'

Just wanted to give a banner notice that there is only one week left to push through!

Thanks for checking in,   Laurie

Oct 19: Response to 'anonymous'

Isn't it wonderful when people criticize you, of course in the guise of it being 'constructive', but won't even admit who they are?   So, you insensitive twit:

Ever occur to you why it is so long between most postings?  It's because I feel like crap.  And when I feel that horrid all I can do is stay on the couch.  I don't like complaining to people, and most don't like to hear it, especially day after day after day.  My mother raised me with 'if you can't say something nice, don't say anything' policy.  Apparently you weren't raised with the same manners.

All my TIME, EFFORT & MOTIVATION goes to working and basic household stuff.  Have you ever been sick, even for a few days?  Did  you feel like doing anything?  Bet not.  But when that feeling goes on for months and years there isn't much of a choice, because things have to be done.

I took the increased dose of the methotrexate last night, I feel like absolute total crap.  My friend Kimmy can take it without any problems, but it gives me major side effects. I can't take it any night before work, so this blows at least one weekend day. The left side of my face and eye are aching horribly, more swollen than usual.  I'm very nauseated, but trying to keep down the nutritious breakfast needed to take the 8 other pills this morning, before the 5 that will come later on today.  I want to curl up on the sofa with a bucket. 

But today is farmer's market, so I dressed and drove there to get veggies and non-antibiotic meat.  I put on the last pair of clean underwear to do so, now have to do laundry.  Had to clean out the litter box, because the cats were indelicately dropping stool outside of it because it was so full.  The place desperately needs to be vacuumed, but it won't get done.  Kitchen table covered with stuff that needs to be coped with, won't get done.  I take the bills out of the mail and throw the rest in a box for 'later'.  My handyman is coming over to take out the three air conditioners, we haven't been able to get our schedules together for weeks to get this done, so it can't be put off.  So, despite the fact that I just want to vomit there are things to move around, have to go out to the garage for the bag insulations stuff goes in and rearrange. 

Yes, I'm typing this as I rest briefly.  Because I type fairly quickly it only takes a few minutes.  And I'm pissed that there are people like you who can read my saga and still be so stupidly insensitive.

So, here's my response:  you clearly need to read my post again, although not all the '2,000 words' will be necessary.  Concentrate on my descriptions of the TIME & EFFORT & MOTIVATION that it takes me to do daily activities, because you clearly are missing the point.  My days and energy are spent doing the basics and, as you point out, it does take effort to keep in touch.  But, as I detailed, my effort is going towards survival.  What about that do you not get?  Perhaps a reading comprehension course would assist you, because you clearly are not processing what you have read.

If you so desperately miss my voice, then you pick up the damn phone and call me.  If I feel lousy I won't answer, but try to return calls within a day or two.  If I can't talk, then I'll shoot a personal e-mail, but will probably refer you to my postings, because it's much easier for me to do this to keep people informed en masse than exert myself making individual phone calls with energy needed to get food.

Better yet, why don't you come over and help me?  Maybe if I didn't have to cope with the mundane necessities that sap my TIME, EFFORT & MOTIVATION I'd have more energy to chat.

Laurie

Oct 12: The reality of fatigue

Tired.  Exhausted.  Weary.  Drained.  Fatigued.  Everyone has used those words at some point to describe how their body is feeling.  Generally it is from something physical, or after coping with emotional upheaval, be it job or personal.  For most it is transient, an unpleasant feeling that will pass after recovery, often just a good night's sleep will be restorative.  When said in the context of an activity it is considered to be something that you can 'push through'; if you are at work or studying and you feel tired you take a break, walk around or stretch.  For some it is a sign of weakness, something to not be admitted to or 'given in to', it can be overcome and dealt with by mental toughness. 

But the fatigue from illness isn't something that can be coped with by a 'quick fix', or by powering through.  I believe that I've addressed this in the past, but it deserves to be revisited, because for those who have never dealt with the tiredness from an illness it is difficult to fully comprehend.

Obviously the reason I'm bringing this up is because of my current state.  I am exhausted.  It has become overwhelmingly constant, not just a daily state of being but every minute of every day, the only change the degree.  I dealt with this before the surgeries, as well as during recovery.  After the last surgery it went on for years, literally.  But in the last few years it had become more predictable and was not as constant.  I could do a few hours of work or activity before it hit.  This isn't surprising, based on basic understanding of my physiology and repeated surgeries.  It was something the late Dr. Baughman expected I'd deal with for the rest of my life, due to a combination of factors.  But my energy has deteriorated to a level not seen for years with the advent of the autoimmune disorder.  It's being further complicated by the CPAP for the sleep apnea, as it remains that the quality of my sleep is improved, but I'm waking 2-3 times a night in pain/discomfort from the drying out of my eyes and mouth, exacerbated by the airflow from the machine that worsens the two issues while addressing the sleep disorder.

Over the last several years I've made dozens of adjustments to my life to accommodate a chronic condition.  The two most obvious ones were the decrease in my work hours and downsizing my house.  The work hour decrease began in spring of 2006 during the initial evaluations at Brigham which confirmed that I wasn't exaggerating, it wasn't just in my mind as the assholes at Presbyterian inferred, there was a real physical reason for the fatigue and shortness of breath that never went away after the first surgery.  Dr. Cohn decreed that I work no more than three days a week, only in the office.  Dr. Baughman told me that his prediction was that would be lifelong, which is why I knew disability was a probability at some point in time.  The house was twofold: decrease the amount of space that needed to be navigated on a daily basis and decrease overall cost by finding an income producing property.

But while these were and are the two most significant, there have been many other changes which are not as obvious, but have had a huge impact on my life.  The hardest to deal with has been the drastic reduction in my social life.  While many people disappeared, presumably due to not being able to cope with my chronic illness and pending death, many others faded away due to my not being able to give the basic attention that any relationship must have to continue.  It is difficult for most (if not all) of the people who interact with me to understand that it is an effort for me to socialize, even on a minimal level.  Maintaining relationships requires at least some level of interaction on a regular basis, and this is what I've been unable to do since the beginning of my illness.  Over the years, it has taken a huge toll on the number of friends I have.  There are very few people that I have any communication with on a regular basis, and even when I'm feeling a little perkier than usual I hesitate to contact anyone who hasn't been part of my life because I feel obligated to justify why I haven't been in contact and that just seems like too much effort, therefore exhausting me sooner.  It is apparently hard for people to believe that I am so tired that I don't even want to talk, not even on the phone.  If you've never experienced this level of fatigue you don't realize that merely listening and responding takes an effort.  And without even that basic communication people drift further and further away, and my pool of friends becomes smaller and smaller. 

The last few months have been even worse.  This autoimmune thing is kicking my ass.  At least with the heart stuff I could rest and, in the last couple of years, have a more predictable number of hours a week that if I pushed myself it was possible to make some human contact.  But since July even basic interaction has seemed too much to handle.  Everything that I have is given at work, as my goal has always been to not allow my illness to affect my job performance (accepting that it is already limited to only the office) or my interactions with patients and staff.  No one sees the effort, that once I get into my car there is an almost physical deflating of my body.  I drive home, which requires an effort to stay focused for even safety, change my clothes, throw some food down for the cats and then collapse on the couch.  At some point I struggle up and grab something to eat, mostly things that require no preparation and can be eaten while reclining, which limits selection and nutrition, and then rest for several hours.  When I can function again it is to make a nutritious lunch for the following day (the only reason my weight hasn't ballooned up even more), wash dishes, clean litter boxes, replace household supplies from the basement (ie soap, TP, paper towels, etc), shower and prepare for the next day.  Any communication with others is too much effort, outside of the cats who require blessedly small amounts of energy, making them even more endearing to me.  Days not at work are spent either commuting to a seemingly endless array of doctor's appointments or basic errands for food and basic house supplies.  These leave me exhausted and result in the same retreat into silence on the couch for hours, often for even longer periods as I'm recovering from the previous day(s) of extra effort needed for work. 

Keeping the house picked up and clean has become a laughable dream, as the few people who have been over can attest to.  Vacuuming once a week is a necessity and one of the times I'm grateful for living in only 850 sq foot space, as well as daily dish washing, but everything else is just pushed off to a 'later' that never seems to come.  Last week I stayed in Friday, Saturday & Sunday, leaving only once to go to the Farmer's Market.  That amount of time at home finally gave me the chance to change the bed for the first time in over a month--totally disgusting.  Had to strip bed, make up again and do laundry, all of which took over six hours with the number of rests involved.  The towels in the bathroom were also horrifically overdue, more than three weeks.  On another day I finally cleaned off the dining area table that was overflowing with paperwork, bills and the general stuff that seems to accumulate, a necessity after the addition of two more envelopes lead to a collapse of stuff all over the floor.  What wasn't touched was any cleaning of the bathroom or kitchen, any outside neatening up such as coping with leaves, or reducing the large amount of stuff piled so high and pervasively on the large kitchen table that even the square foot of space that allows eating has become crowded.  The benefit of living alone is that I'm the only one dealing with dirty sheets, towels and house.  I'm not proud of admitting these time frames, but it's my reality, and a concrete example of how things that most people take for granted becomes a major expenditure of time and energy for me.  Part of what keeps me in balance is that this is better than it had been when my heart was at it's worst and even eating was chore.  (This revisits a little known fact that you can't breathe and swallow at the same time, so someone in heart failure who is short of breath at rest gives up the eating for the necessity of breathing.  At least this isn't as bad as it was before, although the negative is that my weight is up from the combination of prednisone, lack of movement and continuing to eat.)

At this point I'd like to point out that what I'm describing is NOT depression, which would be the more common reason for someone to retreat so much from the world and severely limit their activities.  My mood is fine, with the exception of an occasional hour or two of depression at how narrow my world has become.  I want to chat and leave my house for a movie or something, but am just physically incapable of doing so.  My sense of humor is intact, as is my will and hope for improvement.  There is no question that I can not continue to live like this, and my expectation is things will look up once I'm out on disability and don't have to use every ounce of energy to work.  Knowing that there is an end point in sight is really helping my cope with all this.

I hope that this does not come off as complaining, but an explanation of the reality of chronic illness, which has become the goal of this blog and my revealing so much.  I also hope that for those of you who have never experienced this overwhelming fatigue it will give you insight and compassion for those in your lives who may be dealing with this issue.  Putting this in writing also helps me when I do get upset about my lack of friends and activities, because it makes for a very pragmatic justification as to why and how my world has become so narrowed.  On the plus side is that it's a new TV season, so lots more to watch while on the couch.

Unfortunately for the timing of my disability starting is the government shut down.  Outside of everything else is that the Social Security offices are closed, so there are no disability submissions being processed now, which means that there will be a backlog once the shutdown ends.  Since I know things will be very tight until I get on SSI and am able to work one day a week it doesn't make sense to apply when it's a guarantee that my application will take even longer to process than usual, keeping me on the restrictive long term disability for more months.  My plan has been for October 31 to be my last day: the PA I'm training to do stress tests is coming along nicely and should be ready by then, the last day of the month makes it easier for figuring out financial stuff and it would be the end of that work week for me as I'm not working that Friday.  But the date may need to be pushed into November if the shut down continues past the 16th or so.  Fingers crossed.

Thanks for checking in and following the saga,   Laurie