Brain adjustment

I knew that my brain had adjusted to my glasses, which were progressive bifocals I wore all the time, so there would be a period of adjustment to my new vision.  The surprise is that my close vision keeps getting better as my eyes adjust.  I keep going back to Dollar General and buying weaker reading glasses.  I started out with +2.50 but now I'm finding +2.00 stronger than I want for reading or writing with my book or pad on my lap.  For my laptop I am now happy with +1.50 instead of +1.75.  I'll keep a pair of +2.50 for close work such as sewing.

I took a walk today with my kids and found that I had a bit of movement of the road as my head moved with my stride.  I don't know if that is a brain adjustment to glasses with progressive lenses that I am unlearning or possibly a little distortion in my lenses (which are not aspheric).  I'm confident my brain will adjust and filter it out.

I was warned when I got progressive lenses that they were hard to get used to.  What no one warned me is that it is just as hard to adjust back to not having them.  My brain had compensated for the progressive lenses to give me an accurate sense of the position of steps and the like.  So without them, my brain at first gave me the wrong information about where to put my feet (making a correction that was no longer needed).

Posts in this series (reverse chronological order):
Eye Surgery Follow-up
Brain Adjustment
Second Vision Correction Surgery
The Week Between Surgeries
Day after Surgery
First Surgery
Refractive Lens Exchange

second vision correction surgery

I just came back from the ophthalmologist, where I had my day-after-surgery appointment.  20-20 in both eyes!  Happy Dance!!  The 20-20 line of the eye chart was a little clearer with the eye that had surgery last week (clearer than it was the day after surgery), so I'm hoping with further healing for the right eye I will be better than 20-20.  The world is more three dimensional than it was with glasses.

I noticed different things in the second surgery than than first (and I had some trouble getting them to listen to me about what had been done differently the first time).   But I did get my half dose of Versed, and the experience was no worse.  The day of surgery was pretty miserable with the scratchy discomfort of the eye, but I had hope it would feel fine the next morning and it does.  Between surgeries my vision was so confusing that I wanted to stay home most of the time.  Now I want to go out and give my brain lots of opportunity to adapt to my new vision.

I'm still getting used to how I look without glasses.  My first reaction is that I don't like my eyes.

Getting used to reading glasses for actually reading isn't a problem.  I'm wearing them on a chain around my neck so they are with me.  I have a less powerful pair for my laptop (because it is further away), and they sit next to the laptop (I bought a four pairs of $6 reading glasses in some different strengths).  What is hard to get used to is things that mix reading and computer distances, such as cooking, or laptop and middle distances, such as looking at my food and the others at the table when eating.  I need to see how much improvement I get in those things now I have both eyes working together.

Posts in this series (reverse chronological order):
Eye Surgery Follow-up
Brain Adjustment
Second Vision Correction Surgery
The Week Between Surgeries
Day after Surgery
First Surgery
Refractive Lens Exchange

The week between surgeries

If you are too nearsighted to be able to read comfortably without glasses, plan very carefully the timing of the week between surgeries. I am finding it quite difficult to function. It might be a little easier if I were wearing my glasses and using the eye that has not yet had surgery. But my glasses broke so I am using the eye that had surgery and cheap reading glasses. In either case, there is no avoiding the vision of one eye being totally blurry. This is a particular problem for driving at night because every bright light has a big blur around it. If you need to do significant driving at night, get an eye patch beforehand.

The adjustment to using glasses for closeup is such a reversal of all my habits, and it is harder to make that adjustment when the vision from one eye is completely blurry at the same time.  Yet it seems like a good thing to use the eye with the new lens, to have brain and vision settling in together right away.

Cooking turns out to particularly be something that requires working at a variety of distances.  But I'm glad not to be working.  I don't have much feeling that my body is recovering from trauma, but it does feel right to take it a little easy.  And doing a lot of reading either on a screen or from papers would be hard.  Christmas is nice because I can enjoy sitting around with my family, and I have my daughter to help with the cooking.

One of the improvements in the corrected eye is a greater sense of depth, the world is less flat.  But I am using only one eye and therefore lacking binocular depth perception.  Add to that that reading glasses make things appear a lot closer--it seems as if my arms have gotten shorter.  Pouring things was hit and miss at first.  Because I used progressive bifocals, I also had gotten used to odd information about the lower part of my field of vision.  No longer wearing glasses, I have missed stairs several times because of that and one time actually fell (luckily going up my front steps).

Posts in this series (reverse chronological order):
Eye Surgery Follow-up
Brain Adjustment
Second Vision Correction Surgery
The Week Between Surgeries
Day after Surgery
First Surgery
Refractive Lens Exchange

day after surgery

I woke up with my eye feeling much better.  I went to the doctor for a scheduled check, and I could read the 20-20 line on the eye chart.  I was very happy.

But living with one eye fixed and the other not is a mess.  I got fed up with wearing my glasses and having my brain trying to put together a clear image and a totally fuzzy image, so I asked the optical shop at the doctor's office to pop the lens out of my glasses on the side that is fixed. I also  bought $6 reading glasses and sunglasses at Dollar General.

The doctor was right that it wouldn't work to take one lens out of my glasses because the size and angle of the two sides would be too different.  I had a lot of double vision trying to wear them that way walking around.  It might work better than anything else if I were sitting still doing close work, but I didn't get much chance to try that because I put the glasses in my purse just in a soft case and they broke (they were 4 or 5 years old).  Outdoors I find the sunglasses a big help--wearing just non-prescription sunglasses and using the good eye is working well for me.  For reading and the computer I am struggling to get used to using reading glasses that only work for one eye.  It is doable, but not fun.

Getting used to reading glasses is hard.  I am someone who adjusted smoothly to progressive lenses, so I am used to having the whole range from distance to closeup just by tilting my head.  I needed to buy different reading glasses for my laptop than for actually reading.  And what am I supposed to do about eating?  It is nice to be able to see my food clearly, but then I can't see my family members as clearly.

I may in the end decide that I want a pair of glasses with progressive lenses, particularly for things like cooking and eating.  But I want to wait a few months and let my vision fully settle in, and get used to using reading glasses.  For now, I'm tired and discouraged (just for the moment--I know it will be better in the morning).  I did too much today--was out of the house almost all day.

Posts in this series (reverse chronological order):
Eye Surgery Follow-up
Brain Adjustment
Second Vision Correction Surgery
The Week Between Surgeries
Day after Surgery
First Surgery
Refractive Lens Exchange

First eye surgery

After three days of eye drops I had my first vision correction surgery today. I was scheduled to arrive at 7:45 and my son went with me to drive me home. It was a dark and foggy drive to get there and I was feeling nervous this morning.

It seemed like a long wait in pre-op. I didn't have to undress at all; they just put a cap over my hair and various drops in my eyes. The anesthesia was Versed by mouth. I said I was medication sensitive and the usual dose might put me to sleep, so they gave me a half dose. I then worried I would regret not getting more but they wanted me conscious. I was a bit fuzzy headed but definitely could focus my rational mind if I tried. They checked many times which eye they were doing and the doctor marked my eyeball somehow while I was sitting up to make sure to line up the astigmatism correction accurately.

When the took me back to surgery they attached a plastic drape over my eye and then various devices I won't go into. The doctor told me to keep focused on the light above me, which was painfully bright. I focused on that task and also on calming my breathing. The doctor didn't speak as he was working so I didn't have a sense of what was happening, just that the light kept changing. And then he said he was done and they wheeled me into recovery.

My eye was still numb so I really wasn't uncomfortable at all. They put a protector over my eye I was supposed to wear until I got home. I was given instructions for eyedrops and they sent my son to drive the car up to the door and we headed home at about 9:30 am.

Not having had significant anesthesia, I really don't feel badly at all. My eye is miserably scratchy, but I don't feel badly enough to stay in bed. I've been sitting in the living room with Christmas carols playing and knitting (which doesn't take much close vision--I can do it in large part by feel).

Posts in this series (reverse chronological order):
Eye Surgery Follow-up
Brain Adjustment
Second Vision Correction Surgery
The Week Between Surgeries
Day after Surgery
First Surgery
Refractive Lens Exchange

Refractive lens exchange

I've decided to go forward with surgery to correct my vision, and since an number of people are interested I want to post both the results of my research and my experience. So this is the pre-surgery post.

I'm a 56 year old woman with a prescription of: R -725 sphere -275 cylinder, L -600 sphere -300 cylinder. That is, I am quite seriously nearsighted, though not in the extreme catagory, and have very significant astigmatism. My vision is too bad to be fully corrected by Lasik. I have never worn contacts because I couldn't bear the thought of touching my eye.

If I were under 40 I would be waiting for the Visian Toric implantable contact lens to be approved in the U.S. Implantable contact lenses are lower risk than the surgery I am scheduled for, and should give the same quality of correction. But they aren't used over age 45 because of the risk of needing cataract surgery in relatively few years.

The procedure I am having is called Clear Lens Exchange or Refractive Lens Exchange. It is exactly the same as cataract surgery with the implantation of a corrective lens, but in my case I am having it done even though I don't yet have any signs of cataracts. I will have a monofocal toric lens implanted, which will correct my distance vision but leave me needing reading glasses. Most people who have such a procedure get a lens that does both distance and close up, but they don't yet make a lens for people with significant astigmatism that corrects both.  And I am not interested in waiting until one comes on the market because the multifocal lenses come at some compromise of sharpness of vision and clarity of night vision. I prize the sharpest possible vision more than not having to wear reading glasses. I am paying for this out of pocket--if I did have cataracts the insurance would pay for the surgery and simpler lenses. My total cost is around $3k per eye.

I had my pre-op appointment yesterday. The most serious risk in my situation is of retinal detachment--perhaps a 1% risk. That risk is greater for people who are nearsighted, particularly with a correction over 9, and for men and younger patients. The risk is less if the vitreous has already detached from the retina, but that is not the case for me. The doctor is at least confident that my retinas show no problems.

He said that 85% of their patients end up with half a diopter of normal, that is, they would have a prescription between 050 and -050. They did a lot of measuring of my eyes, which is very important to me because I really want that accurate correction. My eyes were different lengths so they did an ultrasound to confirm those measurements. It was hard to tolerate the ultrasound sensor on my eyeball even well numbed--I didn't realize that I tolerate the usual pressure measurement well only because it is so familiar. I am going to need that sedation for the procedure.

The two surgeries will be done 6 days apart, Dec. 22 and 28.  In between I will have to use only one eye, as my glasses make things smaller in a way that the lenses will not, so even if I popped one lense out of my glasses it would be too hard for my eyes to work together.

Posts in this series (reverse chronological order):
Eye Surgery Follow-up
Brain Adjustment
Second Vision Correction Surgery
The Week Between Surgeries
Day after Surgery
First Surgery
Refractive Lens Exchange

Orange Marmalade Cranberry Sauce

I only have one oven and I'm doing Thanksgiving (just for four) single-handed, so I'm cooking up a storm the day before Thanksgiving.  I got inspired and made a cranberry orange marmalade, starting from this recipe but with more cranberry.  I wanted something relatively low sugar--this is not a recipe intended for canning--but with fairly long cooking it did set.

Orange Marmalade Cranberry Sauce

2 good sized navel oranges
enough cider or apple juice to cover
2 cups sugar
1 bag cranberries

I removed the central pith and seeds from the oranges and cut peel and flesh together into thin slices.  I packed them down and poured cider over them to barely cover.  I put the bowl in the refrigerator overnight, as is recommended for marmalades.  The next day I measured the fruit and juice (I had 4 cups) and added half as much sugar.  I brought it to a simmer, added the cranberries, and simmered for perhaps an hour and a half. 

I thought it was going to have the bitterness that some marmalade has (which I like ok), but even the orange pieces that include the white part of the peel are not bitter.   It made about 3 cups.

child sexual abuse at Penn State

I'm very caught up in the Penn State story, though not to the point of having the stomach to read the indictment.  It seems to me very clear that children could have been saved from harm, and instead the program was protected.

To me, the legal issues are important because I think those of us at colleges and universities should know a lot more about our legal responsibilities.  I have seen contradictory information, but it looks to me like this article is based on actual research into the details.  Pennsylvania law mandates that school personnel report evidence of child abuse, but that reporting can be up the chain of command.  School administrators are mandated to report to the police, and they are the ones who have been indicted for failing to report.  That is not the case in most states, where school personnel are mandated to report directly to the police or child welfare workers.

So Paterno technically did fulfill his legal responsibility to report up the chain of command.  What is left is the ethical responsibility--harm was still being done, and he didn't act to stop it.  There is a really good article here that focuses on the comparison with the Catholic Church.  And an interesting story about the reporter who has been reporting the story for 6 months.

But the best thing I have read addresses the victims: Rick Reilly on the Penn State Scandal.

update 11/12.  A good story about our ability to act.

caregiving and having a life

What I find hard is becoming a little clearer to me as I recover from the stress of Friday's trip to the emergency room.  I don't have the energy or attention to do much this weekend and I feel low.  Part of it is that I'm now worried about my plans to go to a professional conference next weekend.  But looking at my feelings more closely, I realize that nothing seems important to me.  And yet this isn't a short-term emergency where I can put other things aside, this may be the next 10 years of my life.

Emergency room visit

Friday morning a few minutes before I headed into class I got a phone call from John.  He was crying so that I couldn't understand what he said, beyond that he had fallen.  I grabbed a film for my teaching assistants to show and headed home.  Luckily I had gone in very early so my car was right in front of the building.

I found John sitting on the bench in the bathroom, with a mess on the floor and in his clothes.  Trying to take his clothes off he fell and hit the side of his face against magazine table.  He had a lump and a small scrape, but he wasn't in pain any more. I helped him get the rest of his clothes off and get in the shower and I cleaned up the floor.  I left the clothes to deal with later and went back and taught the second half of my class.

When I got home again I ate my own lunch and then cleaned up the floor and helped him get dressed.  I made him some lunch and then he discovered he couldn't eat it because it hurt so much to chew even something soft.  We decided that had better be looked at, particularly since it was Friday afternoon, so we went to the local urgent care center.  The wait there is usually very long--this wasn't too bad in comparison.  The nurse-practitioner said he needed an xray.

I explained that he couldn't lay flat on the table because his neck is bent forward too much.  It turned out they planned to do the xray sitting up and the problem was he couldn't turn his head to the side very far.  Eventually the technician had him sit on a stool and put his head forward on the table.  He wasn't very stable that way.  I suggested I could robe and hold his shoulders and to my surprise the technician went for that.  The technician said the xrays didn't show anything obvious.

We waited a while for the xrays to be read at the hospital.  The nurse-practitioner came in and said John would need to go to the hospital for a cat scan but it looked like his jawbone was shattered and he would need surgery.  We were surprised given what the technician had said and John's lack of pain, but we headed for the hospital, with a brief stop to get me some food and John a milkshake.

They took John back right away, though then we waited a while for the doctor.  The nurse said the radiologist hadn't seen much, and we began to realize that the nurse-practitioner might have misunderstood the report.  But they did want to do the cat scan.  After another wait they took us back and again they included me in the process of positioning John.  This time he was stable by himself and the technicians just asked me to go to the booth with them each time they took an exposure.

Eventually the doctor came and reported they didn't see any break at all, it must be just a bruise that made it hurt so much.  He gave John a  prescription for pain medicine and we got home about 8 pm.

I have had the principle "avoid the emergency room at all costs," but this was actually a good experience.  We weren't there much over two hours, and that on a Friday evening.  They were much more willing to let me accompany John for everything than I had expected.  I don't know if it was just because they saw he was on Aricept.

When we got home I made him some carrot soup, but told him he would have to ask Paul to help him get in his pyjamas.  Today he has not dared try eating anything that requries chewing.  I'm discouraged by the strain.  Can I really go away next weekend?

I had a useful meeting with an Elder Law attorney yesterday, so let me sum up what I know.

If you don't want to spend all your savings on your spouse's care, it is worth seeing an elder law attorney who specializes in Medicaid at least 5 years before your spouse needs nursing home care, particularly if your spouse does not have long term care insurance (or might run out).  The rules are very complex and vary a lot from state to state.

Medicare does not pay for nursing homes beyond a few months of rehab.  Medicaid will help with the cost of a nursing home, but only after most of the savings of both spouses have been spent, which is easy to do when a nursing home costs $5,000 to $10,000 a month and some people with dementia live in a nursing home for many years.  My husband's 100 year old aunt has been in a nursing home for two years and is doing well--in a wheelchair but still mostly competent and enjoying going out to a restaurant for lunch.  Her long term care insurance lasts 4 years, of which she has used close to two.  When that gets close to running out she will have to move to a nursing home that takes Medicaid, but spending down her savings and applying for Medicaid should be fairly straightforward.

It isn't so straightforward if you are married.  Medicare treats the two spouses as a unit--it doesn't matter if assets are in one name only (even a prenuptial agreement won't allow one spouse to keep separate funds).  The well spouse is allowed to keep the house and its contents, one car, and half of the couples savings up to around $100,000.  All the rest of the couples's savings must be spent on nursing home costs, including in many states the well spouse's retirement savings.  I have a lot more than $100,000 in my IRA and 403b retirement savings accounts.  If I didn't live in South Carolina, I would have to pay the early withdrawal penalty (I'm only 56 so I could easily be under retirement age when I needed the money) and spend down those funds on my husband's care before we could get Medicaid help with the cost of a nursing home. 

What about my retirement years after he is gone or money I had hoped to pass on to my children?  About the only way to keep more than the allowed amount for myself is divorce.  I do have some options for my children if I do it now.  Medicaid looks back and counts any money given away up to 5 years before the person applies for Medicaid.  I can give money to my children or set up an irrevocable trust for them, because I am at least 5 years away from needing help, but if I did that within 5 years, Medicaid would not pay for a number of months equivalent to what was given away.

Be careful also if you expect to inherit any money.  If my mother dies before my husband, the inheritance I get from her must be spent on his care before he would be eligible for Medicaid.  There may be a way to fill out legal forms to refuse the inheritance now, so it goes to my kids instead.  But I have to do that before the five year look-back or Medicaid would count it as a gift.

Reflections for my 35th Reunion

Here's what I wrote for my 35th college reunion (which I don't plan to go to):

My kids are in college—it isn’t yet clear what their life choices will be. I’m still in the same job (over 25 years now). I built a program, Science and Technology in Society, that is holding fairly steady, but at a state university in this economy, holding steady is the best I can hope for. I spent 7 happy years doing triathlons, my longest one a half-ironman, but I’m not finding room in my life for the training any more.

The big change in my life is that my husband (now 66 years old) was diagnosed with Parkinson’s disease and the beginnings of dementia in 2008. His disease is progressing slowly and he can still mostly take care of himself, but I take care of almost everything else. It is far from the equal partnership marriage I signed on for. I managed renovating a house for his future needs and we moved--that was my major focus for a year and a half. The past year and a half has focused on my daughter’s college search process. I still enjoy my job, but I haven’t figured out how to focus on my own research the way I had hoped to when I reached empty nest.

I haven’t made peace with the lack of control yet. I understand that there is nothing we can do to stop my husband’s slow decline, but it is hard to wrap my mind around that and stop researching the disease. On a day-to-day basis the difficulty is how often I have to drop what I might have planned to do and instead help my husband with something or take him to a doctor’s appointment or do something for his 100 year old aunt, who lives in our town. And this could easily go on another 10 years. It is the task I have been given and I’m good at some of it. But I mourn my hopes for in this stage of life.

Looking back on home renovations for dementia

Two years ago we were deep in home renovations, and now I am perhaps ready to write about it.  It was an intense process, but it has been worth it.  I had a hard time finding advice on home renovations for dementia, so I will try to pull together what I learned here.

We already owned the house we renovated, but we did not live in it.  When we had our second child and moved to a larger house, we kept our smaller house--living in a college town it rented for more than the mortgage payment (and that was a 15 year mortgage).  It was rented for about 15 years, mostly to college students, so it was in bad shape.  But I wanted to downsize and simplify our lives, and the small house had a lower level that was walk-in from a car port with no step at all.  My husband didn't like the idea at all.  He remembered the lower level of the house as damp and dark, and he didn't want to face moving.  But he said when I got an idea in my head there was no stopping me. The picture below is the house before the work began.

The house we renovated was built in the 1950s and had hardwood floors on the main and attic levels, plaster walls, and three bathrooms, one on each level.  The picture below is a view from the dining room into the living room on the main level, after renovation but before we moved in.

What I want to focus on here is the renovation of the lower level, which became my husband's space. I had been frustrated in our previous house by his tendency to pile his stuff in any area I cleaned up, and because of his REM sleep behavior disorder and odd sleep patterns I was ready for separate bedrooms. So he was to have his own space on the lower level, and his chaos would stay there, sharing the space only with our son who was leaving for college.  This is my husband's sitting room, which also has a desk.

The middle room has a sink and refrigerator, an eating table, and a corner nook with bed and large closet for our son.  All three rooms got drywall over the cinderblock walls and laminate flooring (no rugs).  We added two closets, one in the sitting room as well as the one for our son.  We put in kitchen cabinets and counter and a new sink (the lower level had once been an apartment so there was already plumbing for a sink in the middle room).  With a microwave on the counter my husband can make his own breakfast and lunch.  The view through the door in the background is into his bedroom.

The biggest job downstairs was moving the bathroom, which was in an awkward place at the bottom of the stairs which made it impossible to enlarge in its original location.  To move it, the floor was torn up to put in drain pipes to a new bathroom location in the corner of the middle room, using the cement block foundation for a small porch as the basis for a roll-in shower (that is, one with no lip between the shower and the rest of the bathroom.

The shower has both a permanent showerhead and a hand shower.  The controls are just outside the shower (necessary because of the cement block)--one control adjusts the water temperature and then two separate controls adjust the volume of the shower head and hand shower  so that either one or both can be on.  I made sure to get a hand shower with an on-off switch on the hand unit as well.

Opposite the shower is a bench to sit on while dressing.  The towel racks are actually grab bars so that they won't give way if leaned on.  The door to the bathroom opens out to avoid the problem where someone falls in the bathroom and needs help but is blocking the door.

We ended up designing the bathroom with a toilet area on the other side of a load-bearing wall, so the doorway to the left in the picture above goes through that wall but does not have a door.  A fold-down grab bar makes it possible to have bars on both sides of the toilet and a wall-hung sink would allow a wheelchair underneath.  The lower half of the bathroom walls are painted blue to make it easier to see the white toilet.  The toilet has a Toto Washlet water squirting seat.  My husband was very dubious about the idea, but once he tried it he loved it.  It is quite easy to install on any toilet if you have an electrical outlet next to the toilet.  In selecting a toilet, I was careful to choose one with maximum flush capacity.

The overall renovations were also a big job.  It turned out the house needed to be completely rewired and replumbed and we bought all new light and plumbing fixtures and completely redid the kitchen.

We also went ahead and put on a new roof and all new windows.  The floors were refinished and all rooms were painted.  The one major change we made in the structure of the house besides moving the lower level bathroom was to add a dormer to the attic bedroom, as the stairs came up to the wall in a way that the building inspector was never going to accept.  We figured out the dimensions of the dormer as they cut the hole in the roof.

Below is a view of the finished dormer from the inside:

I don't know how we could have done the renovation if we had not owned two homes free and clear.  I arranged a home equity line of credit on the larger house, and then we were lucky enough to sell it right about the time we moved.  The renovations cost over $200,000, which I had not expected when we started the process.  In other terms, the renovations cost nearly the appraised value of the resulting house.  It makes sense if it keeps my husband out of a nursing home even for a year or two, but it didn't make sense in terms of what it added to the value of the house. The job took seven very stressful months, working with a contractor who usually built new houses. I am happy we did it not only because my husband can take care of himself more with everything arranged for his convenience but also because moving motivated me to declutter and make myself peaceful space in which to live.

vacation

We spend last week at Kanuga, in Hendersonville, North Carolina, as we do the first week of August every year. We were able to arrange a 3 bedroom cottage this year instead of two, so I didn't have to have my sleep disturbed by John's disturbed sleep.  But it was still closer quarters than we are used to, and returning after a year made John's decline more visible.  He wasn't able to do the whole walk around the lake this year--the easiest hike.  And it takes him so long to get dressed, though he can still do it himself (except his socks and shoes).

Mirena IUD for endometrial hyperplasia (TMI warning)

Ok,most of my facebook friends don't want to hear more about this, so I will write here, where I am more writing to myself.  I want to pull the whole story together, for reference 5 years down the road.

I used a diaphram for birth control my whole fertile life, so I experienced a natural menopause (quite different from the menopause experience of people taking birth control pills).  It is a long process.  During my last couple of years of perimenopause, I had very heavy periods.  Even the highest absorbancy protection lasted less than 2 hours at times.  My doctor suggested ablation, but I didn't want to do anything that dramatic--I figured it would end eventually.  With what I now know, I think I should have been on some kind of progesterone treatment then.

I had what I hoped might be a last period in the summer of 2008, then none for almost a year, then several a little under a year later in the summer of 2009.  Then I had nothing until the spring of 2011, when I had what seemed like a normal period.  I knew that since it was more than a year I needed to have it evaluated, so I went right in for an ultrasound.  That showed that the lining of my uterus was too thick, endometrial hyperplasia, so the next step was an endometrial biopsy.

The good news was that the biopsy did not show abnormal cells, but the thickening still needed to be treated before it did turn into abnormal cells.  Having avoided birth control pills all my life, I didn't want to start taking progesterone pills, so I like the idea of the Mirena IUD, which releases progesterone where it is needed.  My doctor agreed, so we started the process of ordering one.

The distributor for the Mirena is CVS Caremark, which tried to bill my insurance and was told that the Mirena isn't covered.  It turns out that it is covered, but under medical rather than under pharmacy.  My doctor wasn't willing to order it at their expense and then bill insurance, so I ordered it on a payment plan and then will file for insurance and pay when the insurance pays.  It finally showed up at my doctor's office last week, nearly two months after the biopsy.

I was told to take two Aleve before my appointment, and I arranged for my son to drive me.  The doctor had told me that some people find the biopsy easy and some people find it very painful.  I found it trivial so I was optimistic about the IUD insertation.  I think I talked the whole time about concerns about my kids--it did hurt some but I was trying to distract myself.  It was more like bad menstrual cramps than like labor, though with some sense of being painfully poked inside, particularly in the step that measures the depth of the uterus.  Once it was done I was just glad it was over, though I had cramps still.

My doctor said to me "You're a tough woman."  That was really the first time she had admitted that the procedure is pretty painful.  I said "I had a 10 lb 1 oz baby vaginally with an epidural that didn't work."  Yes, I'm tough, and proud of it.  I went home and rested a while then took my husband to his doctor's appointment.  I made dinner, but I was significantly uncomfortable with cramps.  About 6 hours after the procedure they suddenly got much better, so I'm hopeful they're over.

If all goes well I will have another ultrasound in 5 months to see if my uterine lining is back to normal.  But what my doctor doesn't know and I can't find discussion of is how it will get that way. Will it bleed off, in one giant period or gradually over a long time?  Or will it reabsorb without significant bleeding?  My doctor was hopeful that might be the case.

Update in early October:  I had light spotting for about two months, but now it seems to have stopped.  I had a lot of difficulty getting my insurance company to agreee to pay, but that has been because it falls between medical and pharmacy and each said the other would handle it.  Supposedly it is now worked out, but the check hasn't come.

Baseball bat sized Zucchini

On impulse at the Pendleton farmers market, I bought a baseball bat sized zucchini.  The seller said the ones they had cut did not have mature seeds, but I picked one of the biggest ones (over 4 lbs) and it did have mature seeds.  So I peeled it and scooped out the seeds and grated it--I've got at least 6 cups of grated zucchini. 

   I wanted to make a richer chocolate zucchini cake than the recipe that uses cocoa powder, so I started from a recipe at Scandi foods and modified it into:

Reduced Carb Chocolate Zucchini Cake

2 cups grated zucchini
1 cup walnuts, coarsely chopped
1 cup almond flour
1 cup white whole wheat flour
1/2 cup vital wheat gluten
2 tblsp unsweetened cocoa powder
1 1/2 tsp baking powder
1 tsp baking soda
1/4 tsp ground cardamom
1/4 tsp ground ginger
1/4 tsp ground nutmeg
6 oz 70% dark chocolate
1 cup brown sugar
4 large eggs
1/2 cup butter, melted
1 tsp vanilla extract
2 tblsp strong coffee
3/4 cup buttermilk

Preheat oven to 350 and spray a large bundt pan.

Squeeze excess water out of the zucchini. Sift the dry ingredients, except the sugar and almond flour, into a bowl. Melt the chocolate and butter together. Using electric beaters, beat the eggs and sugar until light and fluffy. Beat in the chocolate-butter mixture and the vanilla and/or coffee, then the almond flour. Fold in the flour mixture and the buttermilk. Lastly fold in the zucchini and walnuts.

Pour the batter into the bundt pan and bake for 60-70 minutes or until a a skewer comes out clean. Leave to cool on wire rack before removing from pan.

 

I'm planning on zucchini pancakes for dinner (eggs, flour, cornmeal, parmesan) but that still leaves me with enough grated zucchini for another recipe.

Family caregivers: the different issues of spouses and children

The Lewy Body Dementia Association sent out a newsletter that included a short article on "Five Questions Caregivers Should Ask Themselves."  One of the questions was:

• Do you have a supportive spouse or partner, a negative partner, or no partner? How does this relationship affect your caregiving and how does your caregiving affect your relationship?

Wait a second.  What about those of us who are caregiving for our spouse/partner?  Can you imagine the lack of support then?  I get so frustrated when I go to read an article about caregiving and it speaks only to the issues facing children caregiving for a parent.  Maybe the answer is separate groups: on Yahoo there are separate support groups for Lewy Body Dementia for spouses and for other family caregivers.  Half-seriously, I suspect that is because the children couldn't stand to read the spouses writing about what to do about sex.  Another group I find helpful because it addresses the issues of spouses is The Alzheimer Spouse, which includes lots of spouses dealing with other kinds of dementia as well.

I want to say some things to children caring for parents.  First, if you are sharing caregiving with your parent's spouse (whether that person is also your parent or not), think about that person's right to make their own choices even if they are not the ones you would make (go read this article about knowing what is best for another person).  Watching the decline of a parent and of a spouse are both great griefs, but they are different griefs.  Try not to be so caught up in your own grief that you don't see how it is for the spouse.

If you write about caregiving in a forum not specifically oriented towards children caregiving for parents, please acknowledge that many caregivers are spouses.  And we may be your age.  I'm 56, caregiving for a 65 year old husband in the early stages of Lewy Body Dementia.  I know women in their 40s with children still at home caring for husbands with early onset Alzheimers.  We may be working full time; we may have dreams of what we were going to do in this stage of our lives that have been crushed.  Don't leave us out of your discussions and resources.

Birth control blog carnival

I want to celebrate the decision to recommend that insurance cover birth control--see the blog carnival here--and throw in my own experience.

These days I have the sense that people assume birth control means the pill, but there ares other alternatives. I tend to be sensitive to the side effects of medication, and I didn't like the idea of taking a pill every day when I didn't have sex every day. So I used a diaphragm, from when I became sexually active in the mid 1970s until menopause a few years ago. It is a plenty reliable method if used well--I never had an accidental pregnancy, even though when I decided to get pregnant I conceived the first month of trying.

Now I'm post menopausal but I'm going to get a progesterone-releasing IUD soon to treat endometrial hyperplasia. My insurance company, interestingly, covers birth control for the subscriber and spouse but not for dependents. I suspect that is a moralistic position, as dependents are pretty much by definition unmarried.  But at least the IUD is on their list of things they cover for me, though in an awkward way that took many phone calls to figure out.

It is a pity that people don't consider other options than the pill. Given the tendency of the pill to cause weight gain and my experience of pregnancy, I'm glad I didn't complicate my long term trends with the pill.

Changing up my way of being healthy

I was diagnosed with diabetes in the fall of 2003.  I quickly found the low carb tight control approach, and gradually began to exercise more seriously, as I realized that I could eat more carbs if I exercised afterwards.  In May 2005 I did my first triathlon.  In September 2007 I did my longest race, a half-ironman.  I signed up to do the Beach to Battleship iron distance race the following year, but life got in the way of training and I gave up the idea several months beforehand.  The combination of a low carb way of eating and exercise kept my A1c in the range of 5.6 -5.8 for most of those years without any medication, and I loved being an athlete, enjoyed the training immensely.

I did one sprint triathlon last fall and another this spring, but I haven't been keeping up my training very much.  I still feel healthy, but my clothing size has crept back up almost to what it was when I was diagnosed.  I try not to care, but I miss other people seeing me as healthy.  A year ago my A1c was up to 6.1, which I thought problematic, though to my surprise this year it was down to 5.8--my way of eating works!  I'm lucky in my genes--my HDL chloresterol is naturally high (around 80) and my triglicerides naturally low (in the 30s), but my LDL is mildly high and has been creeping higher.  In the past year I tried to bring my LDL down by adding oat bran to my morning smoothie and taking a garlic supplement, but it didn't work.  I am not willing to take statins--I'm not willing to take the risk of muscle damange or memory loss. 

So I began to consider the idea that what had worked for me so well for five years wasn't working as well any more.  I loved being a triathlete so much and I had felt such pride in finding a way of being healthy that worked for me (without medication!) that it was very sad to admit that it wasn't working any more and consider a change.   I love being outdoors so much, but with less time flexibility now because of John's illness, too often the weather or other commitments get in the way.  And I find it hard to be really dedicated if I am going to be interrupted regularly--if I take a dedicated approach then the interruptions are too frustrating.

I had two ideas for a new way of being healthy.  One is an exercise machine at home, so exercise is more flexible and less of a time commitment.  The other is to go on diabetes medication, because there is a fair bit of evidence that metformin has a wide range of benefits and few downsides (unlike most diabetes medications).  I began to see things differently.  My old way of being healthy worked wonderfully for me in that stage of my life, but change is good, both for freshness and because the once the body gets used to a pattern there is less benefit.  Instead of thinking that I had found what worked for me once and for all, I might try a perspective that every five years I will change my way of being healthy.

So last week I started my new approach.  My exercise machine came Tuesday in a large box on a pallet, and thanks to a young man who works for me sometimes, it is set up.  I'm trying not to overdo it but I am enjoying using it to walk while I read blogs on my iPad.  I would be happy to get on it several times a day, but at this point I clearly need to be careful not to irritate my achilles tendon.  I like the motion of the hybrid elliptical/stair stepper a lot. 

The first couple of days I took metformin I noticed a little stomach discomfort, but that has faded quickly and the main difference I notice is that I feel more energetic--so much so that I have just switched to taking it in the morning instead of at night.  Some people have terrible digestive problems from it, but I didn't expect those because I am lucky enough to have a cast iron stomach.

I'm keeping a few pieces of my old way of being healthy. I'm still going to swim regularly and run/walk when I feel like it.  I'm dropping the garlic and an acai/berry supplement, but I will keep on with:

• oat bran (on the theory that the fiber is good for me even if it doesn't help my cholesterol)
• a supplement called serenity formula which I found reduced the impact of stress on my blood glucose
• a calcium/magnesium combination with trace minerals (I only take one instead of the recommend dose of 4)
• 2000 IU of vitamin D3
• fish oil (which seems to reduce my mild hot flashes)

I will also add Vitamin B12, which Metformin interferes with. I'm convinced by the argument that the methyl form is the best.

I have one more piece to put in place--the treatment I have chosen for my benign thickened uterine lining is an IUD that releases progesterone. Figuring out how the insurance would work was a major enterprise, but it is on its way and my doctor's office will call to set up the appointment to put it in when it arrives. I actually have had symptoms of estrogen/progesterone imbalance for years so I am hoping that if I feel any differences they will be to the good.

I'm excited to be making a new start!

internet issues

I've been having trouble with the internet of our ATT Uverse system. Oddly, some of our laptops worked fine with it, but my daughter's Levono and my iPad lost connection with the internet a lot.  It got to the point where my iPad would download my mail, but anything else I tried to do got a "not connected to the internet message."  I chatted with a representative, who "refreshed the lines" and now it works, though they wouldn't admit there was any problem with the line.  They now tell me to put the cordless phone further from the router, though they put the phone jack right next to the router. 

John's surgery

The short form is that John had his surgery today and it went well.  The surgery was scheduled for 2 pm (we had to be there at noon) and we got home around 6.  The cathether can come out tomorrow.

The rest is whining.  They took us back, I undressed John, and the nurse started an IV quite promptly, but there was a backup in the operating room so we waited more than two hours before they took him for his surgery.  Between the problem this surgery was for and nerves, he had to pee at least 4 times during that waiting time.  I helped him turn on his side a little and held a handheld urinal for him.  After a while the nurse offered him sedation and he dozed listening to a book on tape and waking up now and then to request the urinal or help shifting positions.  The anesthesiologist came by and we confirmed again that John would have a spinal.  The anesthesiologist made a comment about spinals and epidurals that led me to say that I had had an epidural that didn't work but I understood spinals were more reliable.  He said they had a very good record for spinals and epidurals.

My frustration when they took him back is that they told me to be in the waiting room, that it should take less than an hour.  I had brought food for myself, but there were signs saying no eating in the waiting room or the lobby.  So I made a hurried trip to the cafeteria in the basement.

It was more than an hour before the doctor came back out and I learned that the spinal had not worked so they had had to give John general anesthesia.  I did say that I wished someone had discussed with us what they would use if that was necessary.  But we talked mostly about the surgery results.  The doctor gave me before and after pictures of the bladder mouth (more than I really want to know) and told me he had been able to do just what he wanted anatomically.  He cautioned that the symptoms would be worse until the tissue healed and that there might be continuing problems because of the Parkinson's disease, though he thought he could help them with medication.  I asked him for information on what anesthesia was used, and he said he would have the nurse write it down. 

The nurse-anesthesist then came out to talk with me because of my concern about the general anesthesia.  She said she had given him the absolute minimum to just keep him under, a combination of sevoflurane and propofol.  I said I wished we could have had the discussion beforehand because I had some information on what was safest for people with dementia.  She said that they always used what was known to be safe.  I said that the information I was looking at wasn't yet standard medical knowledge.  And instead of dismissing me she wanted to see my list.  According to the research I have done (which is clearer for Alzheimers but there is some evidence is relevant to Parkinson's too), sevoflurane is safer than isoflurane and halothane but desflurane is even better.  She said that John had woken up quickly and seemed to be with-it in the recovery room.  Length of time under anesthesia and how deep the anesthesia are clearly factors in the impact, but there is also some evidence that anesthesia can accelerate the brain changes characteristic of Alzheimers and Parkinson's.

When I went back John was not especially confused, but he was mentally very slow.  I don't think it is nearly as bad as the surgery three years ago, but we will see.  Some of it is stress rather than anesthesia--even before they sedated him before the surgery he seemed really out of it and not himself.

John couldn't really walk in the recovery room, but I assured them than I could handle him at home even if he was wheelchair bound tonight.  He was hungry and wanted a Starbucks smoothie.  My GPS led us first to one inside a business, and John insisted that he needed one right away, not the one I knew 45 minutes away near home.  I found one but there was a long wait.  I did get an extra smoothie out of it because the barista misread the cup and made the wrong kind first and offered it to me.  I thought the kids would like it, but John drank both.  He then wanted to stop at a pharmacy nearby and get his pain medication more quickly, rather than waiting until we got home.  I resisted that; I said he could insist on a smoothie right away or insist he needed his pain medicine right away but not both.  I didn't want to wait 15 or 20 minutes for the medication before heading home.  He decided he could wait.

I wanted to get the transfer wheelchair from his aunt, but he didn't want her to know that he had had surgery and so refused.  So we used the same system we have used before, wheeling him from the carport into the house in an office chair.  I told him that the wheelchair was easier for me so if he wanted to use the office chair he needed to make more effort to get himself around, not want to be pushed around the house.  He agreed to that and that is good for his recovery.

I quickly ate some dinner and hurried back out to pick up the pain medication.  But I was able to leave the kids to get John settled and fetch and carry for him.  Elizabeth just made him some oatmeal.  I have trouble being patient with all the details he thinks up of exactly what he wants.

getting ready to travel

My endometrial biopsy Monday was easy, and they were hoping to have the results this week, but I haven't heard anything.  Hopefully I will hear Monday.  My doctor and I were talking about the bleeding I had and she said "maybe you just threw an egg."  Scary to think that maybe I could have gotten pregnant two years after my last period.

Yesterday I focused on errands that needed to be done before I go away, so today I am focusing on packing.  It seems more difficult because I am driving--I have room to take more.  And it is always tricky because it can be so cold in Chatham in June.

I just checked Google maps and it tells me that in the next two days I have 17 hours of driving (in the absence of traffic)--986 miles.  That is actually a bit shorter than  I thought it was.  It is 10 hours to Harrisburg PA, which is roughly my goal for tomorrow.  But I'm flexible.

Race Report: Clemson Triathlon

750 meter swim 27:53
T1: 4:31
11 mile bike 53:07
T2: 2:08
5K run: time not posted

I hestitated whether to do this race because I have been doing so little training.  But I hated to miss it--I have done Clemson five times, just skipping last year because that was the weekend that worked for my sister to help my mother move.  So I signed up, figuring I could pull out if my knees or back started giving me trouble.  I was pretty faithful about taking a 10 to 15 mile bike ride every weekend the last month, but I didn't push my run/walk past the 2 miles I have been doing.  I did the open water swim practice two weeks ago and I was excited to be doing it, which convinced me that I would enjoy the race.

I got up around 6 and had a leisurely breakfast and rode my bike to the race.  Very relaxed.  It was after 7:15 when I got there, so I didn't have a long time to wait around, though I think the start was later than 8 am.  I had decided not to bother with a wetsuit and was happy that the water felt quite warm.  It felt 78 to me, but they didn't announce that so it must have been just under.  I swam in my sports bra and tri-shorts and then added a short sleeved shirt.

Usually I have been so excited I get out of breath at the start of the swim, but I got a steadier start this time.  The water was still but the sky was cloudy so the buoys were easy to see.  I was pleased with how straight I swam.  This race starts people in waves of 50 or so, and while there was at least one wave that passed me, I didn't get pushed around at all.  It is a long run barefoot to the transition area.

The bike went smoothly and I think I kept my level of effort up fairly well.  I passed a couple of people the last mile.  I ate a half a peanut butter and marmalade sandwich, which tasted wonderful.

The first mile of the run my legs were pretty unhappy and I wondered if I could go three miles.  I took frequent short walk breaks and walked the uphills, and that felt right.  By the time I got to the turn around my legs felt much better.  It had gotten fairly hot, but I was grateful for a breeze and for a cloud that shaded me most of the time I was on the dike.  A Great Blue Heron flew low over the dike not far ahead of me.  I was enjoying the world around me.

I was happy to see the photographer still there when I finished.  Usually it seems the photographer doesn't wait around for the last few finishers.  The web site doesn't list a finish time for me, which surprised me, as the finish was still set up and I would have said the timing system beeped when I finished.  They have been nice in the past about not cutting off people who exceed the time limit.  I didn't happen to look at the clock, so I realized I had no idea of my time and that was probably a good thing. But I would like to have it for future comparisons.  And I had been feeling so comfortable because it is a Set Up Events race, and I trust them.  I did listen to the awards because sometimes I am 3rd out of 3 in my age group, but this is a big race for around here (over 400) and there were more than 3 women in the 55 to 59 year old age group.

I felt sore but I kept walking to gather up my things and after a while my legs felt ok but tired.  No chafing, which makes me feel I've found the right approach to what to wear.  I wasn't looking forward to riding my bike the three miles home but it felt like it was good for my legs to go back to riding after running.  I did walk my bike up the hill to my house.

It also meant that I was still warm enough that I stretched when I got home, which should help how I feel tomorrow.  I also lay on the floor for a while with ice under my back and my legs elevated.  It is nice to feel virtuously tired.  And now it is raining, much needed, so the weather has been very cooperative.

Elizabeth's school formal

Elizabeth's school has an annual formal dance for students in grades 9-12, but seniors make a bigger deal of it so it comes close to being a prom.  Elizabeth has attended all four years; she and her boyfriend got together after going to the formal together freshman year.  She has been looking forward to this year for months, and finally tonight is the night.  I think she went shopping with friends for her dress.  She wasn't happy with her choices of evening bags so she crocheted her own.  Her advisor gave her a ride to a store to buy a black satin ribbon for the strap. 

After watching my friends post pictures of their daughters heading out to the prom, I wished for some way to honor the occasion even though she is in Massachusetts and I am in South Carolina.  So I suggested that I get her flowers.  I checked with her boyfriend's parents and they though he should do it, but he and Elizabeth said they would be glad for me to do it.  I thought I could come up with something different and modern.

I looked at a lot of pictures on the internet, and came up with links to send to the Concord Flower Shop.  The person I spoke to there a week ago said she definitely could do something like the example I found of an upper arm corsage.  I hadn't seen Elizabeth's dress but I knew it was black and white flowers, one shoulder, so we settled on a gardenia and small orchids.  I have only seen a cell phone photo so far, but I think it worked well.

more medical stuff

After John had to go to urgent care because he couldn't urinate, I have been increasingly thinking that he needs to go ahead and have surgery to fix the scarring from his previous surgery for benign prostate enlargement.  He has been resisting the idea, then focused on wanting to go to a different urologist who might try to avoid surgery.  He got a recommendation of a urologist from a friend, and we saw that doctor yesterday for a second opinion.  The doctor said John needs surgery, and this time he accepted that.  He said he had lost trust in his other doctor and wants this doctor to do it, which is ok with me (a 45 minute drive instead of 20 minutes but not too much of a problem). The next step is a cystoscopy to look more carefully at what is going on and decide exactly what kind of surgery, but the doctor did say they could do the surgery with spinal anesthesia, not a general.  The doctor was kind enough to squeeze John into his schedule for the cystoscopy in early May.

I had to write a letter to my doctor to get my test (endometrial biopsy) moved up to before we go out of town, but I did get that scheduled for May 16.  My letter took the approach that it isn't that I am panicked about cancer but rather I am worried about having a precancerous condition and having them recommend a hysterectomy, which I would need to have scheduled as early as possibly in July.  I'm glad my letter worked, but I also have a "gulp" reaction that my worries are realistic.

So it isn't going to be a fun summer.  After his surgery, John is likely to have a foley catheter for at least a week, so he will be not able to do much for himself for at least that long.  I fear that if I need a hysterectomy, I will not be able to have the easier surgery because I have a largish calcified fibriod, so that could be 6 weeks of recovery before I am supposed to lift more than 5 pounds.

life is complicated

This is my place to vent--if you get tired of my complaining stick to what I post on Facebook, which is more balanced.

I've had a frustrating time with my doctor's office about my test results.  When I hadn't heard back in a week about a test done in their office, I called.  I didn't get a call back until 6 pm, and then I got a message saying that my uterine lining was too thick and they want to do an endometrial biopsy, and I should call in the morning to schedule.  When I called, they said someone would call me right back.  When I hadn't heard in an hour I called again.  Turned out the nurse wanted to talk to me to make sure I understood the procedure.  She did answer my question, said there would be some cramping.  Then she transferred my call to the person making appointments.  The first appointment available was the day I need to leave to drive up to Concord.  So I couldn't get an appointment until late June, though I did ask to be called if there was a cancellation.

I'm frustrated to have to wait that long--I don't like living with uncertainty either about whether something is wrong or about whether having to do something more could affect my summer plans.  I'm not much worried about cancer--there isn't a lot in my family and I got tested at the first sign of problems.  There is a good chance that it is nothing.  But what I'm worried about is some kind of mild precancerous state that would mean a difficult decision if they recommend a hysterectomy.

I did tell John.  I realize that thinking he would worry is wishful thinking--he is off in his own world and my issues don't much register.

more TMI--John's urologist visit

On Saturday John was unable to empty his bladder and had to go to the urgent care center and get a catheter put in.  He hardly wanted to get out of his chair while it was in.  Today he went to the urologist and got it removed, but when we went back in the afternoon he wasn't emptying well.  We talked a lot about what to do and he really wanted to try and see if he would be ok without it, though the nurse practioner thought it would be better to put it back in for a while.  The compromise finally was that they taught himself to cath himself instead of using that kind that stays in (Foley catheter).  He didn't like the experience, but what a relief to think that he won't have to go to the emergency room if he can't void at all. 

Menopause (don't read if it is TMI)

I had a tough perimenopause and a fairly easy menopause, I thought.  I never took hormonal birth control (I used a diaphram my whole reproductive life) so I didn't have a planned menopause.  The first changes of perimenopause for me were mild hot flashes at night and my periods became regular, after being very irregular (28-60 days) my whole reproductive life.  That was fine, except it lasted around 5 years and my periods kept getting heavier and longer.  My doctor recommended ablation to reduce the flow, but I said I would try to wait it out.  And indeed my periods stopped before the heavy flow became unmanageable.

I skipped a few periods, then had a few, several times, then went 9 months or so, then had a couple, and finally it has been 20 months or so since I last had a period.  The hot flashes never got bad (I do think taking fish oil reduces them for me) and while this has been a difficult period of my life for outside reasons, I never felt menopause had caused mood swings.  I find grapeseed oil is all I need to manage personal dryness.  At one point about a year after my periods stopped I experienced rapid weight gain no matter how carefully I ate, but that has stablized.

But now after 20 months I have my period again.  Discouraging.  I assume my doctor is going to want to do an ultrasound.  The last time I had one, maybe 5 years ago, I found it triggering, and said to myself the next time I would bring my husband to support me.  But he's impaired enough by his own illness that he wouldn't be a help now.  I guess I'll try music.  I'm not worried that I might have cancer--this has been so much a normal period that it doesn't feel like something is out of whack.

It is annoying to have to go back out and buy supplies.  I gave most everything away, but luckily I had kept a box of my favorite o.b. ultra, which are no longer available.  I did just do some research because I remembered reading when it was too late to help me that progesterone is the best treatment for heavy flow.  And I learned that taking ibuprofen may reduce flow by 25%.  I already took a Naproxen today to help the crampiness so I will wait to tonight to switch to ibuprofen, but I'm happy to know that there is something easy I can do.

Cross reference added later to more of the story

my spring break

Monday I took our daughter and her boyfriend to the airport then John to a doctor's appointment, which turned out to be fairly quick, but I felt tired and didn't get out in the garden.

Tuesday I had an appointment of my own in the morning, then listened to some of an interesting webinar, then took the lead at John's aunt's care plan meeting, then a dentist appointment for me.  I talked to a reporter on the phone while I did some errands and did get to church for centering prayer.

Today I went to the flea market and bought some vegetables and plants and did a little in the garden, then spent most of the afternoon helping our son get registered a the local community college (there were several issues that took them time to work out).  I did get to have coffee with a friend in the late afternoon.  I just took care of getting my son's AP score reported to the community college.  I probably should have given him the necessarily number (which I keep after he lost it) and said he could do it himself, but sometimes it just feels so much easier to do it myself.

Tomorrow I have a couple of appointments for me, then my peer group and after that a spiritual direction appointment.

Rally for the American Dream

My son and I went to the rally at our state capital in Columbia in support of Wisconsin workers.  It was a small turnout but cheerful and interesting to hear the stories of union members.  I wanted my son to have an experience of participatory democracy, and it was a good experience.

avoidance

Several weeks ago I had the thought that I should start organizing the material for our taxes, but I never got to it.  Now I have received two of the forms that sometimes hold us up.  There are a couple of other forms I have not received yet, but at least one of them I know I can get online.  But I'm going to have to get telephone help to do it.  That might be possible for the other too, but for that I will need to contact the broker.

I should discuss with him Paul's refunded tuition.  The broker is going to ask me how soon Paul will need that money, and I have no idea.  So long as Paul is taking a course or two at the community college we can pay.  So how soon might he go to college full time again?  I think my guess is two and a half years, but I could so easily be wrong.

It all seems too complicated, so I avoid it.  But I need to get the taxes filed as soon as possible for Elizabeth's financial aid applications.

making friends with painful feelings

Maybe I should see being a caregiver as a chance to develop a side of me that has been relatively weak.  But I have a very strong reaction that I refuse to go gentle into that good night.  So I'm stuck in a situation where I resent the role I have to play and what I have had to give up of my own plans for these years.  I've struggled with my resentment for several years now, and I don't find a way to work through it and make it go away.

So I'm trying a different approach.  Often our painful feelings are there for a good reason.  It is the force of growth inside us that makes being stuck so painful.  So I'm trying to look at it from the perspective that I'm glad I feel resentment and other painful feelings.  If I didn't, I wouldn't have so clear an impulse in me to lead me to growth and healing.  I want to learn to let the feelings live, even make friends with them.

giving and getting

I went to a local retreat on Saturday that asked us to examine how we feel called to change.  I said I want to grow, develop other sides of myself.  I resist completely the idea that caregiving might be the side of myself I am called to develop, or at least the only one for this period of my life.  Yet it is in some ways not my strength.

At Peace Church Sunday evening Susie preached a very moving sermon about God's love.  John was in tears, and I put my arm around him.  Paul was sitting on the other side of me and had earlier said he was low, so I also put my arm around him.  It felt ok for a few minutes, but by the time we got up to receive communion I was crying hard, feeling that I am always giving, there is no one to hold me.  (If I asked John to hold me he still would, though I don't know how long he would last before he thought of something he wanted or needed.  But it wouldn't work for me because I am too aware of how much he needs from me.)

When I returned from communion I sat down in an empty seat next to Paul--I couldn't bear taking my place between John and Paul.  And Paul patted my arm while I cried.  We talked about it a little in the car driving home and he seemed pleased that he had known what I needed.

explaining my son coming home

Here's what I wrote to Paul's former advisor:

Paul did so well last spring when he transferred to Presbyterian College, but it took him a lot of effort. Several things have gotten in the way since, including losing a week to flu last fall, but I think fundamentally he couldn't keep up the effort. He got off track after the snow days and stopped going to class. He and I talked at length and agreed that he would try to get his act together, but if he didn't go to all his classes and appointments that week then he would come home. I heard last Tuesday that he didn't show up for his appointment with the academic coach and I started the process of withdrawing him.


At the beginning of this term I hoped the issues might have a quick fix with an antidepressant that had more anti-anxiety effects, but now I think that Paul needs to find what he cares about before he will be ready to continue college. He and I have talked about how he may just not be ready for college yet, or at least for how college requires increasing responsibility each year. Hopefully it is a matter of brain development and he can go back in a year or two. In the meantime the plan is for him to do volunteer work and take one or two courses at a time at the local community college.

It is an interesting path we are on because of John's illness. I had been trying to protect both kids from having to deal with their father's slow downward slide, but now Paul has ended up on a different path. I'm going to be treating Paul more like a partner in the household than like a child because I need the help. So far he has cheerfully done everything I have asked him to do. Maybe being home will be the maturing experience he needs. He seems relieved more than depressed to be home.

People at Presbyterian college were very kind through this whole process. I'm glad Paul had that experience of the semester where he did well because now he knows he can do it. If in a year or two he wants to return to a liberal arts college, I will encourage him to go back to Presbyterian.

volunteer work

Paul doesn't have much experience with working.  He never showed any interest in projects at home, and I didn't push him because his problems with coordination and fine motor skills were likely to make it frustrating.  School seemed to be the place he could succeed.  But now he needs something else to do, particularly until he can start taking courses at the local community college in May.  I'm thinking the place to start is volunteer work.  We met yesterday with our pastor, because someone told me he would be a good source of ideas, but he didn't have many suggestions.  I guess the next step is to see if I can get any ideas from friends on Facebook.

changes in our household

Paul is home--he said he could pack himself up and come home but in the end I went to Clinton and helped him.  A few minutes after he left in his car, he called to say he had gone off the road.  He was in a ditch, uninjured and with very minor damage to the car.  So I went to help him and we waited an hour for AAA.  Then we waited another 45 minutes for someone to bring John to drive one car home, as I figured Paul was too shaken for it to be wise for him to drive home.

It gave us good talking time.  I said that when he has been home from college, I have treated that as a vacation and asked him to do very little.  But now that he is home to live, I hope to treat him less like my child to take care of and more like a roommate sharing in the work of running the household.  I said eventually I would even like him to start taking a turn cooking for us all.  His response to that was that it probably wouldn't be very good, but he seemed comfortable with the idea.  I also said I was glad to have him home to help with John.  Paul asked what that might involve and I said the first step is that I want him to learn to put on John's socks (it requires learning because John is sensitive about his feet and Paul puts his own socks on any which way).

I told Paul last night that I would buy him orange juice this afternoon when I went to the store, but if he wanted it sooner he could go to the store for himself.  He said "That would work, I went to BiLo a lot at school." 

Step 1: Integrate Paul into the household as a partner.  That is going well so far.
Step 2: Help him find volunteer work to do.
Step 3: Figure out possible changes in the house so he has better space.
Step 4: When does he want to start taking courses at the community college?

moving home

When I planned the renovation and move to this smaller house, I assumed that Paul would be in college.  There is a large attic bedroom with its own bath, which I gave to Elizabeth, who has filled it with her stuff.  It has a motel style heating and air conditioning unit, which can be left off when she is not home.

John has three rooms downstairs.  I originally wanted him to have two of the rooms and leave the third for Paul, but he didn't like that idea.  John has a sitting room with his TV and a bedroom, both crammed with his stuff.  And then there is a room that is partly Paul's room, but it also has John's partial kitchen.  John makes his breakfast and lunch there, and his endless cups of icewater.  Paul has a bed tucked in a corner and a bookcase and a good-sized closet with shelves.  That has worked fine while Paul has been in college--I like having Paul a little more integrated into the family rather than shut away in his room all the time, and he doesn't have a lot of stuff.

But it doesn't seem fair if Paul is going to be living at home for him not to have his own room.  The trouble is, this is an oddly laid out house, and there just isn't another room.  If he switched with Elizabeth there just wouldn't be room for Elizabeth's stuff.  The main floor is open; my bedroom is the only room with doors, and even it is also the passageway to the screened porch.  John isn't going to be willing to give up any of his space.  I've been laying awake at night trying to figure out how to make Paul a room by finishing half of the unfinished basement area, but it has huge insulation-wrapped HVAC ducts and a washer and dryer that can't really go anywhere else.  If it didn't include the washer and dryer his room would be 8 feet by 9 feet, and would need to have two 3 foot doors (because of access needed to the other part of the basement).  It would have ductwork, some of it with only 74 inches clearance from the floor, and rusty pipes.  It would have a basement window, in a window well.  John wouldn't be happy having to move the stuff he has stored there, but that I am willing to fight.

I need to let go of this and go back to sleep.  Paul didn't come home yesterday--he said packing up took longer than expected and he will come home today.  I need to wait for him to come home and talk about the issue together, not try to solve it myself.  I don't know how he trades off privancy versus the walls not closing in on him.  I wish we could at least move the washer and dryer, but the problem is dryer venting.