clickmom

no break for me

We made it up to utopia for a couple of days and during that visit the SIL and BIL came with their respective families including dogs.  It was crazy to watch three dogs running around on the property but most interesting of all, the SILs dog was most definitely spooked by our resident ghost dog.  You know, I only assume it is bear bait haunting us, it could be my dad who spent his last summer in utopia, because before he died he told lil sis and me he was going to haunt us by turning our closet lights on and then a few months alter he died my utopian neighbor told me that on and off all spring there was a dim light coming from the room where my dad had slept as if there was a closet light on or something!! Or it could even be the sentry's father, because he was living in that house until he was 97 and I suspect he may have died in the house too.  In any case, I am asking which ever entity it is, including any that I may not know about, to help me out and have my lottery numbers come up so I can live in that house happily ever after.

But, back to the SIL's spooked dog.  He was staring at corners, just like sweet pea does and he even walked backwards to get away from what ever it was he was watching and that happened about three times!!!  We are totally haunted.  And it is weird to see a dog walking backwards, kind of like being on some crazy drugs or that weird feeling you get when the car next to you starts to roll forward but you panic for a second and think that your car is rolling back. It just doesn't make sense! 

Today was a testing day.  The husband had MRA pictures of his head, some ultrasound of the neck and blood and urine tests.  By some miracle, everything went beyond smoothly, and we managed to get it all done before (a not that much late) lunch even though the testing places were 42 miles from each other, with us living somewhere in between.  So, I am asking the same guardians which allow us to get unreal amounts of testing done in one brief morning and also allow my husband to drive like he owns the road and never have an accident, if they could just rig the lottery in his favor too.  Forget about my rotten luck, this money will be 50% his! Do it for him! 

Well, well, the second I wrote that last line I got a phone call and now I have to redact.  It seems the MRA was not done to completion and now we have to go back to freaking Yale again on Saturday.  Thanks universe, I was pretty happy about the ease of this morning.  But that would have been giving me some kind of break!  Which it seems I still, 51 years later, am not entitled to. I got your number, universe.  

Ghost dog

I'm quite sure that bear bait is haunting the house at Utopia. When I bring sweet pea here she jumps and every shadow, barks at nothing and can't seem to settle down. What is most impressive about this is that sweet pea is normally the most Zen dog ever. I'm not sure what to do about this tricky situation. Can you get rid of the dog ghost with Sage? I may have to hire one of those ghost hunters from those cable shows I can never seem to find.

I'd like to post a little video of the moonlight on the water with sounds of splashing water in the background but I can't figure out how to do that from my phone

saying enough

I broke down on Monday and picked up the antibiotics the doctor wanted me to take for the infected ingrown toenail he cut away at on Friday.  By Monday my toe was a big swollen burning mess.  I took the required doses on Monday and then woke up in the wee hours of Tuesday morning and puked my guts out, over and over, each time accompanied by heavy sweating and insane dizziness.  In between pukes I'd crawl back to bed, stopping long enough to listen to see if the boys were making any noises from their rooms, because I feared I may have food poisoned the family. I was so profoundly ill that night that I began to bargain with the all mighty.  I promised to never eat sugar again, or gluten or dairy if only I could be well. I prayed that my kids weren't going down the same sick journey, and I even prayed not to die, because I am going to need to stick around a while longer to take of things- you know why.  Turns out I was the only one who was sick. I was completely ill Tuesday, only getting out of bed to drive Josh to school and then falling back into a dizzy nauseated coma for the rest of the day, and then I started out the same today but quite suddenly around 4 PM the whole waves of stomach turning dizziness just magically lifted and I felt my brain had been washed clean.

So, I did the normal thing and emptied the dishwasher, because such is my life.

The husband sure does like to watch the news all day long and that is going to drive me insane.

Josh is done with school and I'm so glad about that.  He did a fabulous job this year and I am so grateful that he managed to get his act together all by himself.  

I need to get out with my camera, because that is what puts my head in a good place.  I feel like I could go to the woods now that I'm not dizzy (and also kept some food down) however, keeping food down is not the same as keeping food inside, so that is a potential deal breaker, I'll have to see how the night goes tonight.  If there was a more deserted woods I could go to I would go there, but I can't even consider going to my favorite woods unless I am confident that, you know....   Peeing behind trees is bad enough ...  Enough said.

 

HELLO from a place of nothingness

One of the symptoms of the brain disease the hospital diagnosed the husband with (but the neurologists are hesitant to commit to) is apathy. If I wasn't bone tired (once again, I made it through the day thanks to a delightfully large extra strong brew of organic fair trade coffee bean nectar) I'd laugh vigorously over my own current inability to muster up a human emotion, but honestly, my main objective right now is to stay awake long enough to soak my bandaged toe before bed time.  I feel apathetic and that would be frightening if I could find the strength to care.

Why is my toe bandaged, you ask?  Ingrown toe nail.  I should have gotten medical attention for it last Monday, but I foolishly waited until Friday and when I finally sat down in the foot doc's office he whipped out the surgical tools and set to work on my little market going piggy.  You know it's been brutal when the foot doc calls to the nurse in the hallway and asks her to bring a tourniquet. (true story!)  Anyway, holy hell my toe hurts.  It hurt before in a burning and infected way and now it hurts in the brutal both sides of my nail were sliced off and now I have to heal way.  I'm trying not to take the antibiotics because I don't want to contribute to antibiotic resistant bacteria either in my own person or in the world.  Let's see how it goes. I still managed to get my 10k steps in at the woods this morning, so it must not be as bad my whiny tired self thinks it is.

Speaking of the woods, it was 100% glaringly sunny and blue when I left for the woods this morning and delightfully overcast 15 minutes later when I got there.  I didn't bring my camera because of the sun and also because the extra few pounds on my back feels like more than I can handle as tired as I am right now (especially with this nagging toe pain) but then I was beyond disappointed.  I played it off in own head as not the best light, (sour grapes) and I tried not to look too much because I didn't want to totally disappoint myself but the truth is that it had potential and I missed out.  Part of me is thinking that I should find a project I can do in my own backyard.  But what?  I'm thinking of constructing landscapes using whatever is already growing and can be found out there.  Maybe tomorrow I will get going on that.  At least I should give it a try to see if anything pans out, right?  I have ideas.  In the least I can see my artist statement about being trapped at home and creating the environment I long for.  Which doesn't totally make sense since I am still managing to get myself out tot he woods...  it's just the rest of the day is killer.  I'm tired, dulled, bored.  But I'm so tired I haven't done anything to fix the bored part.

One day an odd behaving couple was in the check out in front of me. When I got my turn I gave the friendly check out guy a questioning look and he told me how this odd couple comes in and lingers around the free samples eating enough to make a little meal out of it and then how they drink half dozen of the tiny drink samples and then how they buy very little and whip out their individual zip lock bags of change to split the bill.  It was pretty bizarre especially since they were seriously nicely dressed.  He was wearing suede loafers and a crisp white shirt!  Then I swung by another grocery store to buy something the first store didn't have and the strange couple was there doing the same thing again!  I finally found the checkout dude the other day and I couldn't wait to tell him that I followed the strange couple into a store down the road where they were doing the same thing.  A little voice in the back of my head told me how mean spirited I was being but I did it anyway and realized that I had a smile on my face like I haven't smiled in a month.  Yeah, I need something other than the husband's health to think about.

 

not sleeping still crying

I feel fortunate that I am feeling as bad as I do in a time when a girl can purchase a coffee large enough to put out a (somewhat wimpy) forest fire.  There but for the grace of caffeine go I.  

Since my inability to sleep is not surprising considering the circumstances, everyone and their mom has a helpful non prescription suggestion.  Most I have heard about, valerian, melatonin, chamomile, but then there are others, like CBD oil (and where to buy it!) and some kind of chinese fruit called schizandra berries, which I am told by the one who recommends it as a cure all for everything  tastes "like the liquid which would be produced if a lizard vomited and then urinated in his vomit."  Though apparently some people love the flavor.  I ordered mine off the internet today! I can not tell you how much I can't wait to try that one for myself.  But tomorrow I am fetching myself some CBD oil infused goodies because I need to chill out.  Also because I hear CBD oil is good for anxiety and anxiety is my middle name.  That is if I was one of those unfortunate named people who couldn't bear their first names and go by their middle names instead because their thoughtful parents gave them legit middle names to make up  for their lacking first names.  As if my real name was Tunafish Anxiety Smith and I just pretended it was Anxiety Smith, or maybe T. Anxiety Smith if I wanted to be very country club about the whole thing. In either case, no matter where Anxiety fell in my name chain it would be a fitting name, and I could see my name actually being Anxiety Anxiety Anxiety because that is the world I live in right now.  What me worry??

Thanks to the goodness which is a roasted coffee bean I am able to somewhat function, though in my sleep deprived state I find myself thinking about the strangest things.  My grandma had a housekeeper named Mabel.  And to be honest, despite the fact that grandma was a fabulous grandma to me and I loved her with all of my heart, she was not so popular among her peers and pretty much had no friends her own age except for mabel.  They had a special relationship, and I am pretty sure it was born out of some time before I was alive, so I am completely unqualified to discuss it, but Mabel was grandma's friend.  I can't say what Mabel was feeling.  When I was super little, and my grandfather was still around, they paid Mabel to come over and keep house for my then single mom sometimes.  I remember Mabel being so lovely.  Once Mabel showed up and brought lil sis and me presents.  I was shocked, because I knew Mabel cleaned our apartments for money and didn't want her to have to buy stuff for me. I'm guessing I was 5 at the time but that feeling of guilt just hit me hard. (sensitive kid)  I loved Mabel for a being a sweet old lady and I didn't want her to think she had to spend her hard earned money on me. Then I wondered if Mabel and grandma were sitting around being friends in heaven and I cried so hard I almost had to pull over.

I thought the crying part was over, but I guess not.

 

 

one tiny glide at a time

I'm trying to think of how to describe how tired I am and the best comparison I can make is that time I swam 3.5 miles with some teenage boys.  We had about .5 mile left and the boys decided to power it out and left me in the dust.  I hit a wall, felt so tired, but didn't dare stop moving my arms and legs, pretty sure I was doing a slow motion breast stroke by then.  Without the boys swimming near me it was eerily quiet and the water was super still.  All of my senses were super focused on the sensation of the water sliding around my moving arms and I knew I just had to keep going one tiny glide at a time.

During the husband's whole medical crisis I could barely fall asleep and stay asleep.  Now I'm so exhausted I can easily fall asleep, but I have the feeling that I don't want to because I am not looking forward to my bad dreams.  I'm not remembering much of the dreams, just waking up with a racing mind and a nagging feeling.  I don't stay asleep.  Every morning I wake up the second light touches the window,w which is getting earlier and earlier.  Normally this time of year with it's long warm days, is a time of excitement (school is almost out!  I can go to the lake!) but this year I am consumed with worry. 

Did I tell you how over the top happy I am to be back in the woods with sweet pea?  It is ridiculous.  Did I tell you about the woman who brought her dog to the woods even though she suspected he had kennel cough?  OMG.  Have you ever been so mad that a little voice in your head says something along the lines of "I'm about to sound like a crazy person and I don't care." and then you drop all of your inhibitions and social conventions and tell some one exactly whatever is on your mind?  You should have heard me!  I read this woman the riot act, even as she hustled away from me, I just got louder and kept on going.  I told her she was irresponsible, should behave like a decent human being and that her dog was sick and needed to rest, among other things.  And then I warned every other dog owner I saw on the trail.  Which may or may not be code for "tried to form a lynching party but apparently lynching is not any more socially acceptable than screaming after some woman as she rushes herself and her coughing dog away from a angry red faced screaming you."  But you know, I had my reasons.  After all, I kept sweet pea out of the woods for 10 days so as not to be the idiot who infected the entire length of every trail and it was only our second day back!! 

importance

Since this whole sick husband thing happened over two weeks ago I haven't had a good night's sleep.  Today, after bringing Josh home from school I stumbled into the house knowing that if I sat still I was going to involuntarily fall asleep, so I announced my intentions to nap, got into bed fully clothed, and woke up three hours later.  I was so dazed it was a full hour before I could talk again. 

Trying to keep things as normal as possible for now.  Except for the part where I drive the husband everywhere and then follow him around with a tank of oxygen and maybe his walker if he is having one of his more unsteady moments. He has two neurologist appointments for next week and I'm hoping we leave those armed with a better understanding of what he is up against and where in the progression of this disease he is.

One thing that keeps astounding me is that just about everyone I have told asks "Do the boys know?"  WTF people?  Are we living in some crazy mind set?  I'm not in the crazy mind set.  How could they not know?  The husband was in the hospital for 10 days.  I would never lie to my kids, even by omission. I just hate that question so much because it goes against my philosophy as a parent and as a human. Of course the boys know.  He's their father!  

My mom tried to keep her radical hysterectomy a secret from lil sis and me.  She waited until the day before to tell us she was going in for the surgery.  Lil sis and I flew down to Florida and my dad actually called us while we were in the car on our way to the hospital from the airport.  We walked in and he was sitting beside her.  When he turned and saw us there his relief was unmistakeable.  I never understood their ridiculous reasoning around not telling us the whole story sooner. If you ask me it made everything harder on everyone.  Lies are not good.  Just like anger.  Just a waste of emotion. They didn't even tell us the reason for the surgery was because they suspected cancer until they thought (haha so fucking wrong) she was clear of cancer because her idiot surgeon declared her cancer free.  At least she had three weeks to not worry before her biopsy results came in.

Speaking of anger ....  Man, have I been an angry person for the past few years.  And the crazy thing is that I didn't want to be angry, and I went to therapy and asked "How do I let go of this insane anger, which I do not want to hold on to?"  But I could never do it until now.  Now all of the things I have been so angry about have been distanced from me.  All of the husband's callousness and irresponsible behavior- all explained by this brain disease.  In this brain disease the only part which is not typical is the part where I believe he has had it for way longer than most people have it for.  I suspect that he's had it for at least 15 years.  I'll let the neurologist tell me if they think that's even possible.  In the end it isn't what is important (unless you're a researcher)

be nice to me

Listening to the husband's oxygen machine whiiiiirr pshhaaaaaaaahhh whiiiiirr pshhaaaaaaaahhh whiiiiirr pshhaaaaaaaahhh over and over again has the effect of putting me into this lovely numb state of mind.  

I haven't been to the woods with sweet pea because of the kennel cough for a week now, but for the last two days I took her to the fields near my house to get her back on track.  She was so ridiculously happy to be out that it made me sad.  But everything seems to make me sad with this diagnosis knocking around in my head.  Sometimes I cry just if I think someone is about to say "How are you?", like when I got the line of a familiar cashier at the grocery store or when I saw a familiar face coming towards me at the fields.  It's easy to get around that moment when dogs are around because I bend at the waist and pet a dog so no one sees my eyes welling with tears.

I think the thing that is really mostly upsetting me about this diagnosis is the amount of suffering involved with this kind of slow life robbing brain disease.  He's been so reckless with his diabetes for so long that I have accepted his premature demise and I secretly hoped would be quick and easy.  I don't wish anyone to suffer ever.  Even people who do horrible things should not suffer.  Suffering should be eliminated from our existence as much as in our control.  Nothing good comes from suffering.  It seems unfathomable to me that the husband will be reduced to someone who is unable to move or communicate but might be aware of his surroundings.  I'm trying to educate myself but the stories are just so incredibly devastating that I can only take in a little each day.

There is some kind of neurologist shortage here in the nutmeg state.  I tried to get the husband in to see some specialists at Yale, but they only make appointments after a referral and they are booking new patients in the fall.  Really?  They're getting a referral. The dude who specializes in this stuff is two hours away and he isn't booking until October.  Even the local neurology group which saw the husband in the hospital didn't have a single open appointment until the third week in June.  But then I realized that I knew the wife of one of the senior partners (dog friend from the woods) and they gave us another time next week.  In the end it doesn't really matter since there is nothing that can be done beyond measures to "keep him comfortable" but it is somehow reassuring to think there is a doctor we can go to, even if they can't help. Mostly what I want to ask right now is what I need to do to be prepared.  I know tough times are coming and I like to have everything figured out before the shit hits the fan.

I'm not sure how much to force on the kids right now.  Normally (or I should say normal since last October when he went on disability) Josh and I leave while the husband is till sleeping and don't wake him up.  This morning I told Josh he was going to wake his dad and say goodbye every morning so he didn't have regrets in the end.  I don't even know if that's the right thing to do.  As always, I am just hoping to do the right thing.

My mom had a rare form of a rare terminal cancer (peritoneal mesothelioma) my dad had the rare terminal aggressive form of prostate cancer, and now the husband has a rare terminal untreatable form of parkinson's.  What the hell?  Am I cursing people?