settling

We have been home for five weeks and in that time started school and moved DS1 up to his campus.  It doesn't seem like enough time to establish a routine, but we getting there.  This last week was odd, not having him around, but we're getting used to it.

Mom seems fairly stable this week.  Issues that were plaguing her last week seem to have resolved. Specifically, she had huge bruises up and down her arms from scratching too hard, but the diligence of my siblings in keeping her from scratching and putting lotion on her have helped enormously.  I talk to her every day, and some days we even can have a conversation.  Yesterday was not one of those days.  She couldn't hear a word I said, even though I was literally shouting into the phone.  It's hard.  One of my brothers told me how, from week to week, he notices little things, like she's having a harder time finding the right word (like saying"red berries" instead of cherry tomatoes).  And one of my sisters told me how, for a very short time, Mom seemed like a completely different (and very aggressive) person.  It's all expected but that doesn't make it any easier.

I still don't know what I'm doing for my own diagnostics this fall.  Just yesterday and continuing today I have what I think is muscle pain under my right ear.  (I just put a heat pack on it and it felt good, but as soon as I took off the heat, the pain came back.)  I have been doing my physical therapy stretches religiously, but the tension in my right neck never seems to resolve.  This new pain is different from just the usual muscle tension, which only hurts when I turn my head the wrong way.  This hurts all the time, enough to distract me.

On Wednesday I left school to go pick up the kids, thinking that my grad class was starting that day. (It didn't, that's this week.)  I was texting DD to be please be ready when I felt what I can only describe as a little "pop!" and then felt drainage down the back of my throat.  It tasted a little salty, and I thought, is that mucus, or it it blood? Question answered when blood started dripping from my nose.  Fortunately there is a new ER literally two blocks away from my school, so I pulled in there. The waiting room was empty, so they took my right away.  The doctor gave me a nasal spray that has a vasal constrictor in it, and eventually the bleeding stopped.  He thinks a small blood vessel broke. (My blood pressure was slightly higher than it usually is, but nothing to be alarmed about.)   And he wants me to see my ENT, but my ENT was on vacation last week and the earliest I can get to see him is September 20. I did not book the appointment, mainly because I don't want to have to deal with this.

Still, every time I go out into the heat I worry about it happening again.  My car was super hot that day, and I wonder if that had anything to do with it.  So far it has been OK, I just want it to stay that way.

I'm mostly dug out from the huge amount of grading I had to do.  Now I just have to get my file system set up and all the papers I've collected (not that many, really), filed.  Of course both 7th and 8th grades are having another test this week, so just as I clear the deck of grading, a new pile will arrive!  Oh, and I have 25 pages of reading to do before Wednesday, but I think I should be able to manage that.

Had dinner with all the kids at a nice Italian place last night after mass.  It was great having everyone together again, but the time went way too quickly!

14, 16, 18. 

nuclear family

We're down to four, at least during the semester.

DS1's check-in time was 7:30-8AM, so we got up ungodly early, loaded up the van, and took him to Glendale.  The process was extremely well-organized and staffed by an abundance (perhaps an over-abundance) of enthusiastic young people, there to help with directions, advice, and general good will. I spent a great deal of time patching his backpack, which he has had since first or second grade and won't give up.  He may not have brought a stuffed animal, but he has his security backpack!

He didn't bring much past the necessities, since we're so close.  Thought he'd take the time to figure out what he really wants and then we'll (he'll) get it.  His roommate, a nice guy from San Diego, was the opposite, so their respective ends of the room could not look less alike.  DS1 doesn't even have a hanger in his closet because all the clothes he brought are the folded, in-the-drawer kind.  (DH was surprised by the idea that he would go to class in gym shorts.  "When did college students become slobs?"  He doesn't realize that high school students will go to school in pajamas if they're allowed.  Gym shorts are actually clothing meant to be worn outside the bedroom, so they're OK.)

It's very strange having my boy not here and not just out at a friend's, but really not-here, as in, I don't know when I'm going to see him again.  I'd like to talk to him but I don't want to be a pest.  Eventually I will get over that and send a text telling him I'd like to catch up on how things are going... that would probably be OK.

Mom's condition continues to deteriorate.  School, grad school, upcoming medical tests are all just background noise right now.  I'm managing.

everything looks different from here

We arrived home from Massachusetts just three weeks ago.  It's the weirdest thing, this feeling that everything is completely different while at the same time feeling exactly the same.

Teaching is going spectacularly, unexpectedly well, although this week I have a huge amount of grading to do, and I'm behind in getting my file system set up.  I have nearly 200 students (!!!) this year, and consequently I'm not cutting anyone any slack.  Fortunately the 7th grade cohort is really outstanding -- they just completed their first lab and were very well behaved.  I do have to read their lab worksheets and grade them to know how well they did, but I have the feeling they did they well.

It's odd to have some energy left at the end of the day.  I'd be happier if I hadn't come down with a cold last weekend, but taking quercetin seems to be helping me recover faster than usual.  It's nearly gone and it hasn't even been a week a yet.

Back in Massachusetts, Mom's condition is deteriorating.  I call every day but we only talk for a few minutes.  I try to tell her about what's going on here, but I don't know how much she can hear.  She never tells me how she's really feeling.  Texts from my siblings tell (and show) the bruises she has from scratching herself and the breakdown of her systems, and I hear about the pain that started yesterday and took far too long to get under control.  There is literally nothing I can do.  I call, I text.  I talk on the phone.  I'm not there and I want to be, but that's the way it has to be for now.

DS1 is going to college in about 5 hours.  We'll load up the van and drive him up to the west campus and help him move in and, I suppose, leave.  I'm going to miss him so.  I don't know if I'm worried about him or not.  I think he'll be OK, but he is a bit absent-minded-professor-y.  He will find his own way, though, I know it.  In a last-ditch fit of nostalgia, I took the three kids to Barnes & Noble after school today. It felt right, all driving over together and getting a snack in the cafe.  It made for a nice low-key send-off, because neither sibling will be around when we leave early Saturday morning.

My shoulder has been giving me trouble on and off (using the mousepad on this laptop for any length of time is sure to trigger pain), but it is much better since I've been consistent with the physical therapy exercises, and it's not disturbing my sleep anymore.  So I'm more or less nonchalant about scheduling my followup testing (I did do the vision field test - all clear!).  Dr S, the surgeon at our local MD Anderson wants me to do a CT, but Dr. B my endo wants me to have a whole body scan.  I talked to Dr. S's assistant and asked her if the doctors could confer and she said no, it would have to be my call.  This did not sit well with me.  I even called and talked to the BC/BS nurse on-call about it, who told me I should talk to Dr B and see, because if the WBS is positive, wouldn't she order a CT anyway?   This situation was nagging at me until today when I had a chance to talk to Y at the hospital, and she looked at my chart and said they recommended PET/CT followup, not a whole body scan, but she would have the nuc med doctor review my chart and decide what I should have for followup, and then discuss it with Dr B.  I'm glad that conversation is taking place at the doctor level and not with me, because I really don't feel qualified to make this decision.

I'm in no hurry to get treatment anyway.  I need the Mom situation to resolve (lovely euphemism there) and I'm teaching and I'm working on my Master's degree.  I'm sort of flying by the seat of my pants on the non-thesis project, but that's OK because I'll spend next semester writing it up after it has actually been implemented. I had a phone meeting with my adviser at NAU and we tentatively planned for me to graduate at the end of next summer.  If all goes reasonably well, it should be doable.

I'm aware that this is an extraordinary time, kind of a bubble.  Many things that would have me fretting in the past are eliciting little more than a shrug and the acknowledgement that they'll get done eventually.  So far no one seems to even notice that anything is different, even though I feel about one-tenth as engaged in planning and preparation as I normally am.  Since it's my third year, I'm confident that I can do this job and I'm not (yet) having any problems moving the students through the curriculum.  I have about another week and a half before my NAU class starts up, and it is only one class, a literature review.  It's on Wednesday, which remains piano lesson night, so the schedule will be easier this semester since only one evening a week will be weird. Except I just remembered that I have staff meetings every other Wednesday so I will have to plan for that or else I'll be late for class every other week!  That's a perfect example of how my thinking is, these days.  Obvious problems are not so obvious to me.

I still need to plan my research/stewardship project to finish my summer course...

In these past few weeks I have seen how much having a drink or two helps me feel, not exactly better, just... less compressed at the end of the day.  I can see how it could become a habit, and then a problem.  Just the fact that I'm thinking about it in these terms helps reassure me that won't happen, but it's not something I can be complacent about, especially given how much I like a good bourbon.

home, finally

Crazy week -- I had my "teachers on the estuary" class at Waquoit Bay, and it was awesome.  But that meant that I was in class from 9am - 5pm Monday-Wednesday (well, Monday had a 10am start), and until 3pm Thursday.  It was awesome that the class was just up at the research reserve, which is literally a 3 minute drive from Mom's house, but being occupied for 8 hours each day meant that my time to visit Mom was limited to the evenings.

So after school I'd visit with her for a couple of hours, and then have a late dinner with the kids.  We have necessarily been doing a lot of eating out: British Beer Company at Falmouth Heights is great for dinner, because we can park in the Heights Beach parking lot.  On Tuesday, Bastille Day, we had a fabulous dinner at Bleu in Mashpee.  Wednesday the kids settled for pizza from Pizza 1 Subs 2, but that's not exactly settling.  

Wednesday, I called the nursing center to speak to the nurse practitioner to hear how Mom's re-evaluation went, and learned that they were set to discharge her on Thursday!  When we met with the hospice representative, the date was set -- that was not clear to me, and necessitated a flurry of phone calls and furniture moving and what-not, but I managed to get everything straightened out.   Very late that night my brother and his family arrived from Louisiana, and that helped because they were here to receive delivery of the hospital bed and wheel chair on Thursday morning.  

One of my Boston-based brothers came down with his wife Thursday morning and oversaw the discharge process, which was awesome because I got to attend my last day of class (only a half-hour late because of phone calls and logistics). The hospice sent the intake nurse to look over Mom and treat anything (like bandaging her heel), and they sent her home with her current medications.  Today her nurse manager will be by and we will discuss which medications to continue and which to drop.  Yesterday her blood pressure was the rather alarming 110/104, even on 2 different blood pressure medications.  Now I understand her headaches!

Mom enjoyed eating a big cream-filled donut from Dunkin' when she first got home, and later she enjoyed having crab rangoon from her favorite Chinese restaurant.  She had more calories yesterday than she had had in the previous three days, and she was obviously happy to be home.  She stayed in her wheelchair until about 7:45pm when she was falling asleep, so we moved her into the bed, and she has been sleeping ever since - 12 hours now, with a bit of wakefulness about 11pm when I gave her her night medication.  The hospice sent a variable-pressure bed which inflates and deflates to help prevent pressure sores.

I'm a bit at a loss as to how we're going to manage -- my brother helped me get Mom onto the commode, and then to transfer her from the wheelchair to the bed.  She has some strength now but that will fail quickly.  She hasn't attempted walking since Monday, and her knees would not hold.  Toileting if only one person is here to help will not work, and I do not know how some of my siblings will feel about changing her incontinence briefs.  The hospice intake nurse said home health aides are scheduled for 3 times a week for an hour each time, but that will be for bathing.  I'm not sure how often skilled nursing will be assigned; we'll find out today when her nurse manager comes by. 

In the meantime, the kids are very much enjoying being together again, and last night we all played cards together for hours.  Mom is sleeping in the living room but did not mind the commotion, most likely because she couldn't hear it. Yesterday, she seemed better, but I think that was the psychological effect of coming home and having everyone here.  We'll have to take it day by day.   

roller coaster

Mom was dreadfully sick over the weekend, with near continuous nausea and various pains.  She ate about 10 bites of food total over Saturday and Sunday.  Yesterday was a little better, and today better still - she ate about half a cup of cottage cheese and some fruit cocktail at supper, and it was the most I'd seen her eat in days.  But she couldn't walk yesterday, her knees kept giving out, and she says they didn't ask her to walk in p.t. today.  It's hard to know whether or not to trust her memory -- sometimes she's spot on, other times she's mixing up the days or just forgetting things entirely.  Her somewhat confused state has become the new normal and is not as disturbing to me now, but I do miss my old sharp Mom.

Her refrain, especially when she's feeling, as she says, "Lousy," is "I can't understand how I ended up in this place," so I remind her about not being able to walk and going to the hospital.  But I think she remembers the talk we had before she went to the hospital, and this whole month in rehab was really not supposed to happen.  But here we are, and at least these last couple of days have seemed better -- or at least she has put on a good front when I've visited in the evenings.

I suspect she is rallying because my brother is coming in from LA with his family late Wednesday.  I can't imagine that this upward trend is going to last.

I'm up very late because I took about a 2 hour nap while the kids watched Jaws after a spectacular Bastille Day dinner at Bleu in Mashpee.  So I'm not that tired, and I'm stressed, and I don't want to go to bed.

This wouldn't be a problem except that I have class in the morning at 9AM.  My first two days have been wonderful.  One of the best things is getting to spend time with other science teachers.  Professional development sessions during the school year are just too short, and my NAU classes are great but free discussion time is necessarily limited.  It's awesome spending time with so many other people with similar interests and issues.

I can't even list all the things I've learned about -- even how to canoe, even though I did not paddle, I would like to try if we go out again.  I find myself afraid of physical challenges much more than I used to be, and I don't know if it's because I'm chronically sleep-deprived, stressed because of Mom, or just getting older so I can't mask the fears I've always felt as well as I could, but I don't like it!

Anyway, I've got more sun in the past 2 days than I have in years.  At this rate I'll be going back to AZ with an actual tan, along with a stack of work that I have no idea when I'm going to be able to clear.  I'm stalled on my science project work but I'm hoping to get some of it done next week, because the week after -- it's back to AZ, and back to school!

on the way

The rest of our time in Connecticut passed as wonderfully as those first few days.  We went to Mystic - 10 years after our first trip there!  And we saw the patriotic concert and fireworks at Talcott Mountain, with over 10,000 other people enjoying the spectacular weather.  Saturday we lazed about most of the day, went to Mass, and headed to the Cape in the early evening.

That turned out to be a fantastic choice, since we had zero traffic, and crossing the Bourne Bridge we saw a string of fireworks displays strung out along the coast.

Sunday I took the family to visit Mom at the rehab, and they played a little concert for her on the grand piano in the dining room. My sister came for her usual Sunday visit, too.  Mom loved it.  She seemed well, and enjoyed the time we sat outside with her, admiring the flowers.

Monday was not as good a day.  She told me she felt like crying all the time, and when I asked her why, she said it was because she felt sick to her stomach. Her head aches, too.  The nurse practitioner was in, and said she was starting an antibiotic for a UTI.  I asked for medicine for the nausea, and they wrote her a new prescription.

Today was Mom's care meeting.  My two sisters came down, and the boys called in on a conference call.  Mom has made some progress but she is approaching the limit imposed by her many medical conditions.  The clear outcome of the meeting is that while Mom can recognize that she needs help, she cannot identify what to do to get it. She is not capable of making decisions for herself.

So all of us, her seven children, have to decide for her.  Her GFR (kidney function) is down to 10.  Her nausea and lack of appetite are consistent with kidney failure, and the anti-nausea meds don't work consistently.  Off the steroids, her femoral nerve pain has returned.

The next step is to have a meeting with a provider of hospice services to determine what must be done, and I'll request that tomorrow.  

I went to see Mom again this evening, and she was shivering in her bed.  I helped her into her fleece jacket and that seemed to help, and then I propped her leg up on a pillow.  She was cozy and as comfortable as I could make her, but she had a very difficult day.  I still just want her to be comfortable, pain-free, and well cared for.  We're getting there.

CT with the family

Saturday DH flew in with the kids.  They came into Logan, and I decided the easiest way for us to connect was for me to take the bus from the Cape directly to the airport.  Various siblings offered to drive me, but that would've involved them driving to pick me up & then up to the airport, which just seemed like too much to me.

It all would've worked out fine if the bus hadn't died at South Station.  They said another bus would be along in in 5 minutes, but I know what those "5 minutes" become, so I got on the Silver Line to the airport -- which involved about a 10-minute walk through the maze that is South Station to get to the bus.  The family's flight arrived about a half-hour early, so they were already at the airport.  Then there was a fair amount of back and forth over where to connect, but I finally met them at the rental car depot, and from there we dealt with the maze that is Logan airport's central parking and finally, finally located the chapel where we attended a really lovely Mass.

And then we drove to Connecticut.  We stopped for dinner and by the time we finished it was raining, and DH drove the whole miserable way, for which I was very grateful.

Since then the weather has been gorgeous.  Sunday was saw a local production of Hair, and my poor mother-in-law is still scandalized by the nudity and I think somewhat perplexed as to why we are not. The kids were unfazed.  At this point in their young lives, they've seen it all, and the nudity wasn't aggressive or prolonged, although it was quite complete, as the entire cast strips down.  It was a great production, with phenomenal singing.  I enjoyed it and the opportunity it gave us to talk with the kids about the whole hippie lifestyle, which is not appealing to them.  DD is somewhat drawn to the hippie aesthetic -- the look, not the philosophy -- as am I, but you can borrow from the style without having to buy in to the philosophy.  I do it all the time.

Yesterday we hiked Talcott Mountain, as we do every year.  But this year DD and I took the blue trail down instead of the yellow trail, and it was a much more interesting and challenging hike.  The yellow trail is basically a walk up (and down) a long, sometimes steep hill.  The blue trail puts you into the woods and over the huge rocks.  Both are gorgeous but the blue trail had the advantage of being empty except for us.  The yellow trail had the advantage of leading us to a tiny bright orange salamander, which made my day -- this is the first time I've seen one in the wild anywhere in New England, something I had thought I would never do.

Today we had an exceptional tour of the Mark Twain house, led by a friend of my mother-in-law.  He was entertaining and so knowledgeable, and he gave us peaks at several rooms that aren't usually on the tour.  We were very late for our lunch reservation so we'll have to go back so I can get this:

This cat was the starting point for the bedtime stories Clemens told his daughters, and I would love to get a framed print of it.    Lunch was at The Pond House, and while the service was somewhat desultory and the soda completely flat, the food was outstanding and made up for whatever deficiencies came before it.  I had the grilled and chilled peach salad which was perfectly balanced and delicious.

After lunch we wandered around the gardens of Elizabeth Park, enjoying the absolutely perfect weather.

Meanwhile, back in Massachusetts, Mom is in rehab and on a nebulizer because she's having trouble breathing now and then.  She is compliant during her physical therapy sessions but then gets back into bed immediately and stays there for the rest of the day.  She doesn't want to do anything.  I don't think she has the energy to be bored. She tells me she's not having any pain, she just feels "kind of numb."  It's very sad.  She won't even go out in the wheelchair to see the beautiful flowers they have on the grounds.

panorama of Elizabeth Park's annual garden

next step, baby steps

So Mom went into rehab Monday afternoon.  My initial impression was "This place is so depressing!"

True, but so limited.  Mom shares a room with a pleasant woman who was hit by an ambulance(!), but she's sharing a room!  I said to myself.

She's in the bed by the door, with just enough space between the bed and the wall for a chair.  There's a television mounted on the wall up near the ceiling, above an expanse of blank white wall, on which I taped up big color prints of photos of her birthday flowers, because staring at a blank wall is depressing, I said. Out loud.  And she really misses her flowers, because she does.

Everyone -- every single person -- has been kind and professional. She has physical therapy and occupational therapy and gets washed and dressed and fed.  She is cared for much better than she allowed us to care for her at home.

That's still surprising me: what she allows.  At the hospital Mom became confused and disoriented, sometimes thinking she was at home to the point of arguing about it. (hospital delirium) The delirium has continued at rehab, but she is still on the steroids and will be until July 3.  We are all hoping that she recovers once she's fully off the steroids, but I'm worried that she won't.

Still, she has walked more in the past 2 days than she had in the previous week, but she has lost so much function through inactivity.  She developed pressure blisters on her heels and now they've popped, and with her bad circulation they represent a huge infection risk.  Plus lying in bed for most of the day (everything leaves her exhausted) puts her at risk for pneumonia.

Her nephrologist sent along her lab results, noting that her kidney function is at 12%.  Dialysis is recommended when it hits 15%, but she absolutely will not consider it.  It might make her feel better, but with the arthritis, diabetes, kidney disease, neuropathy, spinal stenosis and degenerative disc disease, it's doubtful whether anything really can make her feel better at this point.

Mom's compliance at this point is creepy, knowing how strongly she felt about doing any of this before she went to the hospital.  She's playing - being - the good girl and doing a fine job of at least going through the motions.  Her level of fitness is so low that even going through the motions will improve her capabilities, at least at first.

The staff at the rehab center have a policy of 2 weeks of observations before recommending a care plan to the family, so they can really see how the patient is responding to nursing and therapy.  By that point Mom will be off the steroids, so we'll have a much better idea of what she's capable of in the longer term.  In the meantime, we just have to take it day by day.

same universe, different pocket

Thursday we found out that the source of Mom's pain is not her PAD. The vascular surgeon ruled it out following a leg study which showed her ankle pulses are nearly normal. Why he didn't refer us to the emergency room for help at that point is beyond me, but he did say he would put a call in to Mom's primary care doctor.  My brother left Thursday night to get back to his family.

Friday morning, hearing nothing from Mom's doctor, I realized that I could not continue to safely care for her myself.  That started a round of discussions where we went back and forth between the ideas of hospital or hospice.  She decided, after much pressure from a couple of my siblings, to come to the hospital.

I had researched her leg pain and symptoms - knees buckling when she walked - and am pretty convinced it's femoral neuropathy.  The only question is, what was causing the nerve impingement?  She has spinal stenosis and type II diabetes.  It could be a bone spur, it could be a blood clot, it could be diabetic neuropathy (which we know she has already, in her legs and feet.)  I finally got a call from the doctor who advised me to call 911 to have an ambulance bring her to the hospital, and life has been even more strange ever since.

I'm still wanting only 2 things for my mother: good care and as little suffering as possible.  Friday was horrible as she was subjected to six hours of testing.  They gave her large doses of dilaudid but that did not touch her pain, which was nerve-related.  Multiple x-rays, ultrasound, and CT scan - they had actually ordered an MRI because her pacemaker was not in their records, even though I had told them about it when we came in.

People have been super for the most part here, but the troubling thing is, they still don't now what's causing the pain.  They put her on IV steroids Friday night and for the last two days she has looked the best I've seen her.  Being pain-free can do that for a person -- and since her kidneys are so compromised, she basically can't take any pain meds except Tylenol, which she says doesn't do anything.  So she has been on zero pain medication for months, and I'm sure the relief from pain was wonderful for her.

They ruled out fractures and blood clots, but can't see any other nerve impingement.  They're happy that the steroid worked, but today they transitioned her off the IV steroid to an oral steroid and she was in so much pain this morning that she had to double up on her oxycodone, and even then it took 45 minutes for it to kick in so she wasn't wincing, gasping, or shrieking every 30 seconds.

The physical therapist is supposed to see her today and evaluate her.  I am sure they will recommend rehab and a strengthening program, and I'm equally sure that it will just be more torture for her.  The hospital atmosphere here is very nurturing, but in the rehab they expect you to do for yourself.  She will not be comfortable, and she will not be home.  And when she gets home, she will just go back to sitting all day and very quickly lose any gains she may make.

On Saturday I was with her while she was eating her dinner and I noticed her breathing had become very labored.  I called the nurse who checked her vitals, and Mom's blood pressure was so elevated they put a nitroglycerin patch on her chest.  She had been on an IV, and they had pushed so much fluid she was heading into congestive heart failure.  She has been off the IV ever since, but then we run back into the issue of dehydration.

Mom's other problem was that she hadn't moved her bowels since last Saturday, but she was finally able to evacuate everything that had accumulated.  Many of us were thinking that mass could have been adding to the nerve compression, but that was on Saturday and today's pain says otherwise.

At least, because she's spending most of the day with her legs up, the swelling in them has basically disappeared.  The skin still shows the signs of PAD and her toe is still necrotic, but the legs are not swollen, hard, and hot the way they used to be.  It surprises me that Mom is still having so much pain because they look so much better, but the pain is obviously unrelated to the swelling.

Looking back on all this I don't know why I didn't just take Mom to emergency on Monday when she first couldn't walk.  It would've made sense, but at the time I just figured it was a progression of her PAD.  When we learned it wasn't, that pushed me to call for help.  In retrospect, I should've called for help immediately, but then there was the fact that Mom didn't want me to.   I feel like this whole process has been horribly accomplished so far, and we are not even close to being done.

Physical therapy is here now evaluating her fitness, and it's clear that her mobility and strength are very compromised.  And now the nurse practitioner has come in to say they are moving Mom to rehab this afternoon!  All of this is happening very quickly.

in the pocket universe

So, I'm at Mom's, but everything is completely weird.  I left the kids home and flew in last week on Monday, and Mom was slow but still getting around.  Her 88th birthday was Saturday, but she insisted she wasn't going to have a party.  So we said, that's OK, we'll have the party for you.

My oldest sister and youngest brother were here on Saturday with their respective others, but the big to-do was Sunday, when my oldest brother and all his children and their spouses and children came down, along with my other local brother and his family, and my other sister and her two daughters and their children.  Babies everywhere!

It was a really lovely day, very low stress.  I cleaned the house and the front yard up a bit, and made sure the grill's gas tank wasn't empty, and I baked mini cheesecakes and brownies, totally low stress prep.   Everyone else coordinated and brought food, and one nephew cheerfully manned the grill.  And when it was over, they packed up all their leftovers, because they have huge families and here it's just Mom and me, and Mom doesn't each much, and I don't eat wheat (which leaves out a surprising number of food items.)

And all that was lovely, and Mom was doing OK.   She has peripheral arterial disease and her legs are swollen.  She sometimes needed help getting up, but she could still get around using her walker.

All that changed on Monday morning, when Mom could barely make it from her bedroom to the dining room table.  I listened as she came so slowly down the hall, and I knew there was something wrong.  That short trip is the last time she walked.

The pain in her leg is much, much worse.  So much worse that she doesn't argue about taking her pain medication anymore.  So much worse that she pretty much doesn't argue about anything anymore - including the incontinence products she's using now, which are thankfully much more effective than those she was using.  But bathroom trips were exhausting until my sister told me we had a commode downstairs, which is a Godsend.

I don't know how I handled Monday, and on Tuesday when my brother called to tell me he couldn't make it, I described in detail this situation and the fact that I am so completely out of my depth here. So, God bless him, he came anyway, and it's so good to have another pair of eyes (and especially arms) here to help me figure this out.  There is so point in thinking she's going to get better, because she's not.  Thank God for my brother, though, since he figured out how we could get Mom to her blood test this afternoon -- wheelchair and stairs are a tough combination, but between the two of us, Mom didn't even get bumped a little.

I'm trying to keep Mom comfortable, well fed, and pain free, but I do feel like I could do everything better if I had a clue how.  I'm not sleeping very well.  My whole life feels wrong and weird, except now that the not-walking, extreme pain situation is ending Day 3, I'm actually kind of used to it, but I don't want to be.   My brain keeps rejecting what's happening while at the same time I'm trying to do what she needs me to do.

... Stupidly, I'm still trying to accomplish all the tasks I laid out for myself for these 3 weeks, before I even left home and when I had no idea I'd become a caretaker rather than a companion.  I need to plan my school project, and I have actually started it.  Then there's the landscape overhaul:  weed and mulch the front beds, clean out the side yard (jungle), clean up the back perimeter.  Some of that may have to wait until after the tree guys come, which should be before I had off to CT.  I'm working on house-clearing projects, too, and managed to clean out both freezers, so no more freezer burnt anything.  Huzzah! We're also getting windows replaced and the garage door in the summer kitchen removed and replaced with a sliding glass door, and having the window guy here necessitate straightening up more than I really wanted to, but I did it anyway.  I'm just bummed I won't be able to see that when it goes in, because everything is being custom built and it won't be installed until August.

Last but not least, I'm counting a victory against the scourge of spiders that has been plaguing us for years: Miss Muffet's Revenge, a spider killer and repellent.  Friday I vacuumed walls and ceilings, on spider patrol.  I sprayed all around the outside of the house and then the downstairs on Saturday.  Usually, we could vacuum on Friday and spiders would be back in residence, at least in the bathrooms, by Saturday evening, but so far the bathrooms (along with the rest of the house!) are spider-free and that's amazing.  It's supposed to last up to 12 months indoors. Oh, if only that were true! Here's hoping for a relatively spider-less summer.

beginnings of endings

I'm up ridiculously late, again, because I (again) fell asleep on the couch for a while, so now I'm not that tired...

Tonight was DS1's senior dinner.  It was 3 hours of listening to the faculty read a very personal speech about each of the graduating seniors, all 78 of them, and it was lovely.  The faculty member who spoke about DS1 was one I had never heard of before his thesis defense, but it was obvious that she knew him well.  She was witty and warm and everything you want someone to be when they're talking about your son.

My son, who tomorrow has his college orientation.  Who two weeks from today will graduate from high school, and about 2 months from now will move out, at least during the term.

Things are rapidly drawing to a close, but it doesn't feel real.  My technology sabotaged me viciously over the past couple of weeks: my laptop died, it's battery no longer charging.  I prayed that it was either the battery or the adapter, so I ordered new ones, but neither did the trick. (Still have to return those...)  Since my end-of-term projects were due in both my classes, I didn't have time to deal with laptop shopping, so I just picked up DS1's old Toshiba, which has a surprisngly awesome keyboard but is seriously underpowered and has a super annoying overly-sensitive touchpad.

When my laptop died part 1 of my final project went with it (it was a work in progress, and Carbonite hadn't had a chance to back it up yet).  So I recreated it, and went on to part 2... thank God I printed out the lesson map before I uploaded it, because somehow instead of uploading my copy to my Google drive, I downloaded the blank template over  my copy... and then I went a little crazy and spent hours trying to recover it, when I should have just typed it in again (I am an idiot).

I never did recover it.  I ended up re-doing most of it at school the next day ( a test day for my 7th graders gave me good opportunities); that was Tuesday, so by about 4PM Tuesday I had parts 1 & 2 done, but they weren't due until Thursday.  Part three was due Tuesday at midnight... I had most of it done by then, but some pieces were a wee bit later.  I don't think that will be disqualifying...

So yesterday I did the last little smidgeon of part 1 (samples of anticipated student work) and uploaded that, and so I'm done!  But it feels anti-climactic because all I did was upload some (OK, a lot) of files.  I didn't talk to anyone or get to have a real good bye or anything like that.  The relief hasn't actually hit me yet.

DS2 finished up the track season with substantial improvements in all his events, and one of the coaches lobbied him hard to return to the team next year, but he's cautious about managing high school, which I think is wise.  His 8th grade commencement is the night before DS1's graduation, and my own students' commencement is the night before that. DD has more or less neatly recovered from leaving classical piano study to moving into jazz and composition, and she'll be playing her own composition in the graduation recital which is the day after  DS1's graduation.   I'm getting used to having that overwhelmed feeling more and more lately.  My own children are growing up so fast (such a cliche, but it's true!) I simultaneously want to slow things down a little and speed them up so I can be on summer break...

Health-wise: better, but the new rheumatologist took a look at my labs and declared I don't have RA.  So why do my hands swell overnight then? Whatever.  I'm officially out of the flare, I'm convinced it's because I started exercising again even though it was literally the last thing on Earth I wanted to do.  I did a Google search on reversing degenerative disc disease and I found this guy's website.  I have spent a lot more than $20 and a lot more time in doctor's offices figuring out what to do, so I ponied up the cash and I bought Rebuild Your Neck almost immediately after I wrote that last post.

I've been doing the exercises faithfully (although somewhat less faithfully now that my neck feels so much better) and it's nothing short of a miracle.  I know exactly why I got into this situation, too:  too much time with head craned towards the laptop (all those school projects, and grading!), plus the damage that my surgeries have done to the musculature on the right side of my head and neck.  They still bother me, but it's slowly improving as I continue to exercise, and the neck pain itself is over except for the occasional twinge, and I haven't had a headache in weeks.  Plus, I'm not taking any meds.  I've started on turmeric  and ginger (separately) for inflammation, and they don't seem to be doing much, although the ginger helps my digestion.

The only remnant of a flare I was having was my right middle finger, which would be nearly twice its usually size in the morning -- odd.  The doctor was talking about injections or a short course of prednisone (ick) when I asked if I could just wrap it or something.  That gave him the idea to just write me a prescriptions for Voltaren gel, which has worked really well.  I mean, I used some on Tuesday night and haven't needed it since, although it's feeling a little creaky right now.

I'm exhausted, though -- late nights every day this week, between school work done, lost, and re-done, and now feeling emotional after DS1's dinner and that nap!  Tomorrow is a non-instructional school day, so it will be easy to get through, and then plenty of sleep this weekend - should be heavenly.

The Self, the State, and the State of Self

DS1 brilliantly defended his senior thesis this afternoon. I was a bit late - driving over to his school always takes longer than I think it will, and then there's the need to park-- but I only missed the first few minutes.  By the time I arrived, he was settling in to the groove of addressing the very tough but fair questions his panel of professors addressed to him.  I asked him over the weekend if he wanted to practice, but he assured me he didn't need to; he loves to talk about this stuff.  It was evident in his responses, which consistently referred back to his source material even if they did get a big circular at times (glimpses of the old expressive fluency issues, coming to the surface.)   Still, he made his professors think in a new way about personal "truth," not as something that just happens inside your head, but as something that you act upon and build your life around.  It was obvious that it was a new idea to them all, and there was some push back, but that's not a bad thing.  I am extraordinarily proud of him for making them re-evaluate their approaches to the question of truth.  It was fascinating.

This year has been marked by huge accomplishments by all the offspring (as I often call them.)  DS1 with his thesis, DD with her brilliant musical composition, and DS2 in becoming a more active participant in his own life by auditioning for, and winning a spot to perform at, the Titan Triad and going out for the track team.  After 18 years I'm seeing the first indications of the adults they will become, and it is literally amazing.  I am so often overwhelmed these days, but I will never mind this feeling of my heart being too full when I see what my children can do.

meloxicam, day 3

So far my impression is "meh."

It has done a good job of reducing swelling, so I'll give it that.  But pain in hands, collar bone, hips, etc is all still there, just slightly less -- say a 4 on the pain scale instead of 6.  So that's better. 

However, neck pain is nearly as bad as if I were taking nothing.  The ibuprofen did a much better job controlling that.  This is not muscle pain but pain at the vertebrae themselves.  It feels "crunchy" (which makes me think bone-on-bone, but I don't think it's that bad) and it hurts.

Headaches range from ignorable (1-2) to killer (7-8), which is pretty consistent with the ibruprofen.  I intensely dislike it when my front teeth hurt...

Worst of all, though, is the reflux.  I had a smidge of heartburn yesterday (Thursday, day 2), but today I feel the way I did years ago when I had gastroparesis and my gerd was out of control.  Sick.  Popping some calcium antacids helped; omeprazole would've been better but we're out. I'm not willing to get back on a drug I worked hard to wean myself from (omeprazole).  Even one day of reflux left me struggling with my voice today.

On the upside, trying to keep the reflux down encouraged me to drink tons of water today.

I don't think this is the drug for me, but I'm not sure how much longer to give it before I say "enough". I have been taking it before bed (about midnight) to help mitigate that side effect, but that hasn't been entirely (or even moderately) successful.

I'm not taking any more tonight -- I'll investigate more tomorrow and figure out if I should try to tough it out another couple of weeks, but I don't think that makes any sense.

pain management

After an inordinate delay caused by the insurance company's long telephone wait times, I was finally able to get in to see my new rheumatologist on Tuesday.  I have mixed impressions but I'm trying to remain open about the experience.

First off, his manner is a complete 180 from my previous rheumatologist, was a nurturer and very much into building a relationship.  New doc is all business and brusque, and that's OK, except he seemed to be discounting everything I said: when I told him I had RA, he challenged the diagnosis, going so far as to examine - without explaining what he was doing and why - every joint in my body (literally). 

I want to say that it was his tone that made his questions ruffle my feathers, but that's not quite true: When Dr. P diagnosed you, do you happen to know if your lab test were positive?  (I said I didn't know, but I have a feeling they were not...)  Then: How is your anxiety?  (I told him I was feeling stressed because I was concerned about getting to my class on time.)

He pretty much completely dismissed the problem with my neck, saying that arthritis rarely strikes the spine -- to which I replied, it could be osteo, but the MRI showed arthritic changes -- and his response was, "You probably have a disc problem." 

No, I don't have a disc problem, and I know that because I finally got the MRI report from my doctor's office today and it specifically says that the problem is not a disc problem.  So there.

He ordered a billion tests (I had the blood drawn yesterday) and put me on a once-a-day NSAID called meloxicam, 15mg/day, which is interestingly double the normal starting dose.  I started it Tuesday night so I have had 2 doses and I have noticed that it is helping tremendously with the swellng, but not the pain, as my hands are still killing me and my neck is now giving me more issues than it did when I was on the ibuprofen, plus the return of the ever-so-delightful headaches. 

OTOH, I have lost a few pounds of the fluid I was retaining and I'm happy about that, and my fingers don't look like little fat sausages every morning -- yesterday I could put my rings on almost right away, but today, again, I had to wait about 2 hours before I could wear them on their proper finger.

I'm seeing him again on the 28th, and I'm praying that my bloodwork shows something "real" because he seems like he might be one of those doctors who needs labs to back up a diagnosis, even though 25-30% of RA patients don't have RA factor.  All I know is, I'm miserable, and if it's not RA, what is it? 

spring

That month was a blur.  I expected to be less busy after science fair, but the two classes I am taking are keeping me hopping, mostly because I keep implementing stuff I am learning.

Also, I'm falling apart (again).  My RA is still flaring unbelievably, to the point where round-the-clock ibuprofen is having next to no effect, at least on my hands. (I've given up - I'm trying to get in to the rheumatologist for pain management.)  But the real kicker is my neck, which has been bothering me since the beginning of the year so I finally went to the doctor, who ordered an x-ray (first).  You know it's bad when you can see the problem on the x-ray.  I had the neck MRI on Friday and I'm waiting to hear what my next steps will be: most likely physical therapy, maybe a brace, but I need something to manage the pain.  600 mg of ibuprofen 3x/day as a therapeutic dose like I did last time is helping a bit but not completely. 

Then there are the headaches, which are not back-of-the-head headaches that I would get from my neck, but middle-of-the-head, behind my eyes headaches, sometimes my front teeth hurt.  This makes me nervous that it has to do with the pituitary adenoma, because I've also noticed light sensitivity and a couple of brief moments of double vision.  When I saw my eye doctor for my annual eye exam, she was concerned about the size; 11 mm is about the size that starts squishing the optic nerve, so I'm going for a vision field test to see if my peripheral vision is affected on Friday.  I'm glad I'm seeing her soon because I'm not happy about this.  I shouldn't be having headaches when I'm on 600 mg of ibuprofen...

Of course my weight is up because of all the inflammation (RA), the bad sleep, the ibuprofen which messes up my insulin metabolism. Sleep is OK with the ibuprofen but still not that good, which isn't helping either.

Meanwhile, my unit plan is due Thursday and there's gobs I still have to write up for it; plus I have to grade last week's 8th grade quiz in advance of tomorrow's test (and 7th grade quiz), and we're launching my new physics unit on Wednesday and I'm simultaneously excited and terrified.  If I felt physically better I think I would be mostly excited and only a little terrified, but since I feel so beat it's about 50-50.

So I have summer plans already, going to Mom's early in June, solo; the kids and DH will come out later.  DH will have his two weeks, and the kids will stay until the end of July.  DD is taking a summer oceanography course at WBNERR, and I've applied for the teacher course the week before (fingers crossed).  Plus I'll be working on revamping the science fair as a portfolio project, and I'm thinking that might be for credit -- so that would be two different independent studies over the summer...

... but I am NOT taking two courses during the school year ever again. 

OK, part 2

The MRI went well on Monday, once the insurance company found me in their system, and after only 3 failed attempts at putting in the IV for the contrast.

I hate MRIs because the noise is so startling, but when you're having a head MRI, they put foam around your head that helps a lot.  If I ever have to have an MRI that's not for my head, I'm going to ask for the head gear anyway, because otherwise I feel like I'm under attack (literally) from all of the loud banging sounds surrounding me, getting louder and louder until they suddenly stop.  And then start up again with little clicks that progress to a different cadence of loud banging.

I keep my eyes closed the entire time because I'm pretty sure I would freak out if I saw how confined the space is.  And I pray; that helps a lot.

The very cool thing about going through Banner/MDA is that all of my records are uploaded on to their myBanner website, so I logged on Tuesday to get the report.  I don't have it in front of me and I'm too lazy to download it again, but: results consistent with adenoma (which means benign); no unusual vascular activity (so, no sign of cancer building up a blood supply) and no sinus cavity invasion (it's not so big it's growing into my sinuses).  It is bigger than normal, there is definitely a mass there, and there is "leftward deviation of the infundibulum," which means the mass is pushing the pituitary stalk to the left.

I still haven't heard from the doctor, but I'm not sure about how or when that will happen (it may be up to me) , but it seems to me that none of this is particularly worrisome.  I'm asymptomatic and the mass is non-functioning and my pituitary function is fine, so there's no reason to do anything.

I suppose we'll just keep an eye on it.  An annual CT may be just the thing, less trouble and expense than going through the Thyrogen protocol, and I can check in on the mediastinal nodule and the pituitary adenoma in the same test.

Yay!

Did I say I'm slightly less grumpy about science fair since two of my students took first and second place at the district science fair?  Only slightly, but still - they made me look good.

I finished grading, entering, sorting, and stacking all the science-fair related materials at about 2:30 this afternoon.  I'm trying to tote up the number of hours it took: 3 hours Friday at school and then 5 hours at home and then 2 hours Saturday morning and a marathon 8 and a half hours Saturday night and then another 3 and a half today... that makes 22 hours, right? 

Thank God we have a 3-day weekend.

I am so very appreciative of how quickly I can read, how consistent my snap judgments are, and how good my addition and subtraction skills up to 100 are.  I can't imagine getting through that amount grading if I were any slower. Plus, my organizational skills came to play: I put together a one-sheet listing of all my students so I wouldn't have to be rifling through stacks of paper while I was grading their display boards.  Brilliant, and a great snapshot of who-did-what.

I haven't taken any ibuprofen today and I don't feel too bad.  I'm hopeful that my flare is subsiding now that huge stress is in the past.

Head MRI tomorrow morning, and then basically nothing, so I can get caught up on my homework and my sleep.  Glorious!

OK, part 1

Saw my endocrinologist today, and happily, all my pituitary-related labs are fine. 

She (mildly) harangued me to see my rheumatologist about this flare that is killing me, although it does seem to be letting up.

I'm getting the MRI done anyway.  Endo doesn't think it's worth it, since she says, "There's no baseline, so you don't know how big your pituitary was before anyway."  However, I have had quite a few looks at the inside of my head over the past decade or so and no one has ever remarked on my pituitary before, either from CT or MRI scans.   Even if it's benign and not pumping out hormones, it can still mess me up if it gets too big. 

Still haven't graded a bit for the science fair, but am feeling fairly well caught up on everything else, so I hope to start grading all that ... tomorrow.  Maybe.

well, that happened

Way too much work this week, starting with last weekend when I worked all the hours there were catching up on grading and prep work, but also on my own coursework.

Monday I took photos of the 35 bulletin boards showing all the in-class projects and put them into a power point presentation.  I also found a really cool "science" page border and made signs for all the tables by teacher and grade. Tuesday my students checked in their projects, and I had to review all ~150 of them to decide which ones were worthy of judging.  Then Wednesday was the actual science fair, which involved getting 300+ projects set up in the gym, and the top tier judged.

Only half of my volunteer judges showed up, both great guys who worked hard. 

I haven't been sleeping and my RA has been in a vicious flare for what seems like weeks now, so I was even more exhausted than even all this work would involve (what with full-time teaching and two grad classes continuing uninterrupted).  Maybe that's why, when a top student came by to pick up her display board, which clearly did not follow the guidelines, I commented to her that her font was too small before telling her how excellent her work was.  That didn't sit well with her father, who called me out on criticizing her after she'd worked so hard.  My apologies and subsequent praise did nothing to mollify him, and he went on to harangue me, quite loudly, for a good 10 minutes or more.

When he finally left, one of the judge (I'd only met him 2 hours before!) came over to see if I was OK, and I immediately burst into tears.  Mortifying.  I wasn't crying because I'd been yelled at, I was crying because he was so very kind, and I was so tired, and the whole situation was just so ... unnecessary.  My AP came in to see me, because the peeved parent had gone on to harangue her, too.

The DH bailed on helping me with the break down, because... reasons.  But he did drop off DD, so there were four of us to fold up and stack 300 tri-folds, stack up a few dozen binders, take down the signs, and gather up the various odd materials that the students had brought in even though we'd told them they should not.

When I finally got home, I had to sort through the ballots and figure out who won in both the elementary and junior high divisions. It wasn't obvious so I had to build a spreadsheet.  Then on Thursday morning I had to fill out the certificates and accidentally wrote in a wrong name... oops.  But other than that, and 150+ reports and the 150+ display boards that need grading by the end of next week, it's OVER.

P.S. Today, I checked in with my AP again to see if there was any fall out from the obnoxious encounter.  I was advised to pretend it hadn't happened, which  I have been doing, out there in the real world. The parent had a follow-up meeting with admin and he is "willing to let it go."  When I heard that, I thought my brain was going to explode (and given that whatever-it-is on my pituitary, maybe that actually will happen one of these days.)  That guy owes me an apology.  He chastised me for criticizing his daughter in public but then literally yelled at me for 5 minutes, walked away, and then came back to yell at me more, dragging up stuff that happened last year, when his daughter won the district fair!  It was so bad that another parent came by to tell me I didn't do anything wrong, and that she would stick up for me to the administration if there was any question, since she heard the entire encounter.   And now I really will drop this, and pretend it never happened. I'll never get an apology or even an iota of respect from that guy, so I'm not going to look for either one. 

clarifying...

I realized after I wrote it that the last post must seem absurd: I do nothing (it seems) but talk about my pains both psychological and physical -- here. 

Out in the real world, it's different.  If I'm moving slowly because I'm in pain, I'll let the family know.  Other than that, it's all just business as usual.

I'm feeling slightly less squished because I worked pretty much the entire weekend to get caught up on grades and homework, but I'm definitely in a flare because everything hurts and I'm having trouble sleeping, too.  My mammogram went fine this morning, and it's only one more week until my appointment with Dr. B, where we'll discuss what to do about my pituitary.

Off for ibuprofen, and bed.