Out Of The Blue

Sometimes you are minding your own business, very closely, and someone comes up and touches you on the shoulder.  You jump a little because you hadn’t even realized someone was there;  You were so intent on your own thoughts that you had blocked out the world around you.  That just happened to me.  Someone started following this blog and it startled me.  I hadn’t even realized it was still up and running.  I deleted the whole blog on blogger.  If you type in the name for it it goes to some Indonesian thing for car parts or something.  So, surprise!

Long story, short:  The last year has been a roller coaster.  Not the good fun kind.  The icky ‘oh my goodness, why are we on this thing?’ kind.  Hubby got really sick last December.  I diagnosed him with rhabdomylosis and blamed it on the Lipitor he had been on.  I took him to the doctor and they took blood work and said they thought he had cirrhosis.  They did an ultrasound three months later and said it could be cirrhosis, it could be fatty liver.  They did not seem to be alarmed by his weight loss and muscle wasting.  “Why,” I demanded, “Does he have asymptomatic cirrhosis, mildly elevated liver enzymes, but he has stage four muscle wasting?”  They did not have an answer.  They wanted to run more tests.  They scheduled those tests for three months further on.

Let’s just say that we didn’t wait.  Let’s just say that we got up on a Monday morning and went up to the UVA Hospital in Charlottesville, Virginia and planted ourselves in the ER.  We were not leaving without an answer.  We didn’t have insurance and we didn’t care.  We’ve been turned down by Medicaid three times for ridiculous reasons, turned down for an exemption from Obamacare so we could get catastrophic coverage even though we qualified three different ways for an exemption, and we just didn’t care anymore.  Were we really supposed to just sit in our house and wait until he died?  Because he was going to die before his Medicare kicked in November 1.

Within two hours of entering the ER they told us it was not his liver.  Within four hours they told him they were admitting him and just waiting for a room.  By the end of the day they were pretty sure that he had a devastating autoimmune muscle disease.  They thought that anyone looking at him should have seen that he was in serious distress.  Huh, so did I.

We go back up to UVA twice this week, seeing two specialists:  Neurology and Rheumatology for the final diagnosis, but the preliminary is Polymyositis.  It is not a disease you wish on someone.  My husband is only 62 but he has the muscles of a 90 year old man.  He can’t stand up without assistance (from a regular chair).  He can’t get in or out of the shower without hand grips.  He can’t walk up and down stairs without someone behind him sort of boosting him.  We’ve modified our house in every way possible except a wheelchair ramp.  Please, God, please don’t make us have to have a wheelchair ramp.

They put him on the standard treatment of high dose prednisone.  With a high dose acid blocker.  And something to help him sleep (which is not working, by the by.)  I added in some Vitamin E and a Calcium + Vitamin D gummy.  And I read everything on the interwebs about Polymyositis.  I read about all the treatments available.  I read about things people have tried that didn’t have statistically significant results.  I read about the homeopathic, herbal, massage,alternative therapies ad naseum. 

I’m not the kind of person that you tell “This is what you have and there is only one thing you can do for it and this is it.”  I’m the kind of person that when they told me my son was mentally retarded with language disorders I said, “Okay, so what do we do about it?” and they said, “You can’t do anything about it!  He’s retarded!  He’s got an IQ of 50 and he can’t talk and he doesn’t understand what you say!”  So I went out and I found stuff I could do and we did it and my son can read and write and talk your ear off.  He talks to himself through out the day because it is not just enough to talk to other people.  He asks himself questions and then answers them to himself.  It’s a little weird, but you get used to it.  Anyway, the point is that I don’t sit back and do nothing.

Sorry.  Did I say this was a long story short?  Apologize.  It’s a long story long.

I swear this is absolutely the longer story short!  I found out a high incidence of the people who have polymyositis also have celiac disease.  The Mayo Clinic doesn’t think that a gluten-free diet made a significant difference but it was a small study.  I was looking up some of the signs of gluten sensitivity and they are quite broad, really.  But there were some interesting unique signs that my daughter displays.  She is working on a gluten free diet because her husband had MS and she says when she cheats she gets really sick.  So my working theory is that there is a family history of gluten sensitivity.  There really is a family history of autoimmune disorders, both sides, and the advice is to try gluten-free to see if it makes a difference.

I don’t have a pithy summation.  I’m sleep deprived and fresh out of pithy.

Come on, try! 

Okay, Words to Live By:  Never Give Up!  Never Surrender!

An Observation After Dining

In my house there is no such thing as leftovers.  No food will ever be placed into a plastic container and shoved into the back of the refrigerator to grow mold and then be thrown out, container and all, when one finds it and exclaims, “How long has this been in here?!” in dismay.  No. 

There are two reasons for this:  One is that I ration food.  Yes.  I only cook one serving per person.  And sometimes even less.  For example, the Knorr/Lipton Noodle side dish packages claim to be only two servings.  What?  They easily feed four and I’ve been know to stretch them to five.  Modest servings, to be sure, but then shouldn’t all things be in moderation?   If there are three people eating, there may be one scoop left of noodles, but I assure you it is not a leftover.  Why?  Because of Reason Two.  I have poultry.  Any remaining food scraps are gathered together and given to the chickens and Mrs. Duck. 

Mrs. Duck.  She is the real reason for this observation.  I understand that scientifically she is a duck, a Anas platyrhynchos domestica to be precise, but the plain truth is that she is a pig. 

Posanka, the Half Duck Half Pig, from Turku, Finland

I must say that I had never observed the extent of her gluttonous behaviour until today.  There were some canned ravioli my husband found unpalatable and some rice and a smidge of green beans.  The chickens daintily pick at their food; Peck, Peck, wipe beak, so genteel….  But Mrs. Duck comes with a back up alarm and a shovel.  Beep, Beep, Beep, Clunk, Shovelshovelshovelshovelshovel !  It is appalling!  I actually had to shepherd (no, she’s not a sheep), um, herd her away from the girls so they could partake of the delicacies.  

It should have come as no surprise to me, her lack of manners and her uncouth ways.  After all, who else leaves mud in the bottom of their water when they are done? 

Hmm? 

Anyone? 

I thought not. 

 

Coming Up For Air

Things have been so stressful this summer but I feel like I am finally beginning to breathe again.  I can look around and be content. 

The garden produced well in spite of everything.  I gave virtually all of it away but next year I will plant less of everything and more of what I really would use.  Less tomatoes, more lettuce.  Stagger broccoli planting, plant some beans, carrots, etc.  Make it a salad garden.  Fresh salad every night.  What could be better?

The chickens are also at a perfect point:  Enough to feed us with maybe a dozen extra per week to give away.  They don’t eat too much, there aren’t so many that I feel pressured, they aren’t hiding eggs.  It’s good. 

My arm is getting better every week.  I only take ibuprofen twice a day, and that’s a great indicator of improvement in pain levels.  I can use it more and I try to remember to do that.  I use it with intention, concentrating on the muscles I’m supposed to be stretching.  I can foresee that it will continue to improve and that one day all this will be a bad memory.  

My BIL’s condition has deteriorated, as we knew it would, and he is in the hospital right now.  There are serious doubts that he will return to our house.  They want to put him in a back brace to prevent further spine fractures as his bones deteriorate, but the doctors really want him confined to bed.  We have always said we could not care for him if he became bed ridden.  I’ve done CNA work with really ill people before and I am no longer physically capable of that and my husband is not up to the challenge.  So while the inevitability of his passing draws closer, the breathing space offered by his removal to the hospital has been palpable and welcome. 

The special clarity of Autumn is approaching rapidly.  This has been an exceptionally cool summer and I am trying to prepare for an early onset of Fall.  Some of our leaves are turning already.  I ask myself if they do that every year and I am just rushing things?  Possibly.  But there is the distinct feeling of winding down now, of settling. As if Autumn were the evening of a long day and one can now rest for just a bit and regather their spirit. 

The air is clean and sweet tonight as I take a few slow, deep breaths. 

Better.  Much better.

Rude Awakening

Most people are familiar with the temporary limitations imposed by illness;  Perhaps the flu causes us to be weak and easily fatigued or a broken bone causes us to modify our activities until the bone is healed.  I have to admit that this injury continually smacks me in the face with new limitations, new realizations that it was not just the bone but the muscle and it is  screwed up but good.

Today I went to perform a monthly chore, buying feed for the chickens.  Normally I go to my favorite little store, Carson’s, and they haul the bag out of the storage room and put it in the back of the truck for me.  I get home,  throw it across my shoulder, carry it across the yard, open it and dump it into the can.  Relatively simple.

Well, not today.  Carson’s is closed on Sundays and this required I go to Tractor Supply.  They only had one person on duty, it seemed, and they were behind the counter with a long line of people waiting.  So I gamely got my cart and pushed it down to the poultry feed aisle and selected the Layena Pellets.  Good.  Yes.  Now, how do I get that in the cart?  I can’t.  Of course.  So, I’ll put it on the bottom level.  How hard can it be?  5 minutes later….It was on enough that it was not dragging on the floor.  Much.  The hardest part was that there was no brake on the cart so that it kept moving when I tried to umph the bag up.  Grrr.

Okay.  That wasn’t so bad.  Check out, wheel the thing out to the car.  Now how am I going to get that thing up into the truck which is an easy two and a half feet off the ground?  Heave bag onto ground.  Boost bag onto running board which suddenly went from being an accessory I dislike to a really helpful tool.  Heave up onto floorboard of back seat and shove in.  Pant profusely and get behind the wheel.

Wow.  That was tough.  But it’s done.  Now I get to drive home and have a well deserved swig of the soda that I bought while I was in the store.  Take cap off before I start car, get going, stretch over with left hand and grab bottle.  Good so far.  Raise bottle with left hand to mouth….  Let’s try that again….Raise bottle…..Stupid, stupid arm!!!!  This should be a physical therapy exercise!!!  Why don’t they prepare you for this?  Stretch, stretch, okay, I got a sip but I would never be able to drink the whole bottle using my left arm to raise it.

By the time I got home I had resigned myself to the fact that this was going to be a day for accepting help.  My husband came out when I got home and he carried the bag into the chicken yard and emptied it out into the can.  I think I could have done it with the wheelbarrow and patience.  Time will tell.

While the arm feels 75% better, it works about 50% better and that’s really not enough.  I haven’t been challenging it enough to even see all the ways in which it is limited, obviously.  I know I’ll never change a ceiling light bulb again; There are too many parts of the activity which require the reaching up of both arms above the head.  It is ridiculous that at 54 I am restricted from such basic activities.

But there you have it.  It is what it is.  I’ll suck it up and keep going and look up ways to modify how I do some things so that I can continue to do them even with the limitations.  I know that I still have another six weeks of therapy and much of this may be a moot point by then.  (Although my surgeon himself was the one who told me I will never have full over head motion.)

So, today may have been a rude awakening, but at least I’m awake now.

And that’s a good thing.

All Around The World

2014 is a landmark year for Jehovah’s Witnesses.  It is 100 years since 1914.  What happened then that made it so special?  It is the understanding of Jehovah’s Witnesses that Jesus Christ established his Kingdom in the heavens then, cast Satan and his demons out of heaven, and began the Last Days of this system of things which surround us. 

In an effort to reach as many people as possible with the Good News of God’s Kingdom and how it will benefit mankind, Jehovah’s Witnesses have created a truly awesome educational tool.  It is jw.org.

To get the word out about this website, Jehovah’s Witnesses around the world will be passing out a tract which encourages people to check it out.  This may be the first one you see, it will probably not be the last. 

jw.org campaign 001 jw.org campaign 003 jw.org campaign 004 jw.org campaign 005

There is a fantastic video available to watch if you follow the QR code on the back or click on the link on the front page of the site. 

I encourage you to browse.  There is so much to see and new things are added all the time:  children’s videos, coloring pages, bible based comic books, guidance for teens, families, adults. 

Enjoy. 

What A Difference A Day Makes. Um, Not Much.

Yesterday I drafted a huge venting post about my parasitic BIL who turned up again at our house at 3 AM Sunday a week past and how three days later we found out he was terminal from his AML which had metastasized.  And now that means we get to take care of him until he dies.  Because his kids hate him and won’t take him in. 

Thanks. 

I was really mad about a lot of things about it:  he is unappreciative, pain medication abusive, manipulative, etc.  It was made worse because he had made no moves to pay us back money he owed us-although he was in a position to do so-nor had he offered to pay us something for feeding and sheltering him.  Since we are a household on a fixed income this had made things difficult for us and he seemed totally okay with that. 

But….

Yesterday afternoon he paid my husband back for the money he loaned us and then offered to pay us something for room and board.  Okay, I’m being kind.  He offered to pay us for dinners.  I said to my husband that he does more than just eat dinner with us, you know.  He uses electricity just like the rest of us and plays with the thermostat unless I lock it.  I clean the bathroom he’s using and the rest of the house he has use of.  But not to appear unkind, even if in my head I am totally still ticked off at this guy, I said $50 a week.  Cuz I’m a sucker. 

Anyway, that makes us financially even-steven for now.  So I get to sit and wait for the next really stupid irresponsible thing he does that we get to bail him out of before I can do a venting rant post about him…

 

Diagnosis is Murder

You may recall that Mrs. Duck was exhibiting strange symptoms over the weekend.  We quarantined her, medicated with a broad spectrum natural remedy, and waited.  She seemed better after a few days and we let her out.  She walked around quacking for a bit and then sat down and did her neck-hangy thingie.  It looks like this: 

From Earthlink, Working With Poultry

Except she’s sitting, not standing.  Unfortunately, if you follow the link, it seems to be a clear case of what they call “limberneck”.  Or in french, “botulism”.  Okay, that’s not french.  Isn’t “limberneck” friendlier?  And happier?  Much. 

But, just in case it is a duck version of Crookneck, which I dealt with in Anti-Squeaky when she was young, we are dosing her with vitamin E and waiting again. 

If it is botulism, she’s had the symptoms for about five days now, although she was acting a bit wonky two days earlier. so all told about a week.  From what I read, she’ll either survive it or she won’t.  I don’t know how she picked it up;  Everyone else is okay. 

Here’s to a happy ending.