hayek

Things are improving…

I try to be thankful for any positive changes.  Sometimes I almost forget that but I try to remember each night when I say my prayers, to say, “thank you,” for all the good things that happened that day, even if the good thing is that nothing bad happened.

Although Lynn has not been feeling well since this week’s full moon made him feel all achy, we’ve been seeing improvements.

First off, he’s been getting hot and hasn’t had to wear extra layers as much.  We suspected the iron he was taking was helping him and sure enough, we got his lab work back this week.  His hemoglobin had risen from 8 to 12 in just one month!  That’s awesome!  He’s still low but low normal now.  His iron levels are still too low (he’s 33 and normal is 30-400) but he’s now at least in the range.  He’s been so bone-chilling cold for months now that this is great.  The other good point about this is that if he get’s his hemoglobin stabilized, they might do another treatment of plasmapheresis to see if he can get even more improvement.  That wouldn’t be till November or December but that’s a good possibility.

Second, he saw his pulmonologist and got a good report.  We were a little worried because he’s not using his Hayek as much because he now sits up all night to sleep (my third good

change).  Remember, I wasn’t getting any sleep at night?  Well he now sits up in his wheelchair all night attached to his peddler exerciser so that if he gets stiff, he just starts the peddler going again. He’s also careful not to drink very much just before bedtime. That means that now I only get up once a night to cath him!  Which means I sometimes get up to four hours of sleep in a row!  I’m a much happier camper.  Anyway, since he doesn’t lie down, he can’t use the Hayek so we were a bit concerned about what that might mean for his lungs.  His doctor said that as long as he’s sitting up, gravity doesn’t affect his diaphragm so it’s easier for the lungs to expand anyway.  Also, he’s not bothered by sleep apnea when he sits up probably because his tongue doesn’t fall to the back of his throat.  So that’s all good.

He has also started promoting his book through book clubs and has gotten some who want to review it in their club.  He’s sending out letters himself and researching places to contact.  Previously he has always had to do that with either myself helping him or one of our friends.  He’s sent out about 65 emails and so far gotten five positive responses which statistically is very good. The positive responses have been good for his morale and the typing has been good exercise for his fingers.

So we’ve had much to be thankful for this past week or so.  We still have our challenges.  Ragweed is out and making him stuffy and congested.  That’s no fun.  He can’t find the motor he wants for the leg lifting device he wants to make so he can sleep in the bed at night.  My son called to say he might have to move back home because his girlfriend’s family might be evicted in October (they are two months late in their house payment and have already gotten an eviction notice…how cruel).  He stays there so if they lose the house, he will come home till they all find a place to move into later.  Our lawn tractor is broken so we can’t mow but that’s no biggie…it’s mainly the back yard that grows anyway.  The arthritis in my thumb joints and wrists have been really bothering me a lot.
So even though we have new and ongoing challenges we face every day, we have much more to feel blessed about than we had last month– so we’re to the good.  I hope you are as well.

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Love/Hate Relationship with the Night

I’ve always loved to sleep.  I don’t nap during the day, but if I had my preference I would go to bed between 10 and 11 p.m. and not get up again till 9:00 a.m.  A good night’s sleep for me is 9 hours. During that time I might get up once to go to the bathroom but most of the time I would spend in slumber.  I also love after a good night’s sleep to slowly come awake–stretch a bit, and allow myself to fully come awake.

I can’t remember when I last had a “good night’s sleep” based on the description above. I long to go to bed (which is the “love” part of the relationship) but I hate how often I have to get up at night.  A typical night for me now is to get into bed between 1:30 a.m. and 3:00 a.m depending on how long it takes Lynn to eat dinner (he likes to eat around midnight) and how long to get him settled and comfortable afterwards.  It takes him about 45 minutes to eat dinner. After I feed him, then I help him do his teeth. Then I put him to bed.

Bed time is a ritual.  He’s very difficult to get comfortable in bed. Since he cannot move any part of his body himself (other than his left arm), I spend a lot of time moving body parts, positioning them with pillows or whatever, putting corn starch in places that might rub, putting his “contractor prevention” boots on, then setting up and strapping on his Hayek shell (making sure it doesn’t have any leaks) etc.  Meanwhile I put in a catheter to drain his bladder, adjust the settings on the Hayek and heat up 2-3 heating “pads” in the microwave to put in various places against his body because the air movement from the Hayek over his chest makes him cold.  Then he gets some water, sleeping aid, and dry mouth gel.  I pull his covers up tight under his chin and tell him goodnight and then go off to get ready for bed myself.  Some nights I have to repeat some of the above a few times.  Other nights I just about get him settled and his leg starts “jumping” (muscle spasms).
If his leg starts to jump, that means undoing all the above, getting him back up and dressed in his wheelchair, setting up the peddlar (make sure it’s not rubbing any ankle bones after it’s jumped a few times), putting weights on the peddlar so the spasms don’t knock it out of position, then putting a head strap on his head to keep his head from falling onto his chest when he falls asleep and putting a terri-cloth cape over him and his wheelchair so he won’t get cold.  Then I go to bed.

Somewhere around 1 1/2 – 2 1/2 hours later, I hear, “Hey sweetie, I want to go to bed.”  I get out of bed, take him off the peddlar and start the process outlined above (cath, Hayek, heating pads, boots, water, mouth gel, covers).  Then I go back to bed.  Usually about 2-3 hours later, I hear, “Hey sweetie, I need to get up; I’m stiff.”  So up I go and reverse the process again.  Usually I put him to bed about three times a night and get him out of bed twice. The last time I put him to bed is usually when I’m getting up for the day which is usually six or seven hours after I go to bed; sometimes five but always less than it seems because of being up so much.

When I get up most days now, I’m tired, sleepy, and my body aches.  The body aches are a combination of sore muscles from lifting but also age so I guess if I had a full night’s sleep I would still be achy. The sleep deprivation is a bear, however.  Coffee helps a lot but just keeping up movement does, too.  I usually hit a wall around 5 p.m and if I’m lucky, I can catch a 30-60 minute nap before he gets me up for something he needs.  That keeps my feeling pretty rested till bedtime. But with all that I have to do at night now, I feel like I’m “on” 24-hours a day without a break.  Night-time just isn’t what it used to be anymore.

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