Think I'll Eat Some Worms

 

Got that pit of the stomach feeling again. No doubt because I am self-indulging my miserable feelings of worthlessness. I am alone. I am utterly alone. You know the drill. 

Here's the deal. I suck at a lot of things, being a caregiver tops the list. Other things I suck at. Barn building. Roof panels still not on correctly, kicking my ass and requiring help (again). Work. I have off days at work and get called into the office so often I need my own seat. I don't know how long this can go on before I get canned. Being a decent person. This goes back to caregiving, but it goes deeper. I am just not nice. 

Yesterday, I bumped my head, and my wife said, "Sorry you bumped your head. Did you learn anything?" I was not happy to be lectured so I tried to ask her to not include the scolding on account of I just bumped my head and it still hurt. She is PMSing right now so she jumped on my "stupidity" -- "12 years of..." --  "I have no sympathy for...."  I should have quit while I was behind, but stupidly I argued about how right I am...again. Long story short: no nap, no nookie and Boopie up in the middle of the night crying. 

It's not about me. I look at my wife lying there in bed, and nothing makes her happy anymore. She can't do anything other than play Farmville and write on Facebook. When she's asleep is the only time she seems to be at peace. I don't even know if that's the case; she looks like she's exhausted when she wakes up, like "why do I have to exist?" I don't have the answer. I know I'd be suicidal if I was in her shoes. Or socks as the case is. She never wears shoes because her feet rarely are on the ground for more than a few seconds or she will go into hyper-panic mode. 

Back to the head bumping. She says she has no sympathy for anyone who has two arms and two legs and can walk around and bump their head. Or walk around and stub their toe or....you get it? I don't blame her for that. I filter everything through my own pain as well. It doesn't help that I get agitated by everything. She said, "You never show me any sympathy, and I'm the one who deserves it the most. I am just getting back at you and showing you how it feels." Touche. I get it. 

She is really mad because of the diet I am trying to put her on, which is somewhat lower carb than she'd like. That is, no pizza, spaghetti, dairy, high saturated-fat meat, etc. She has been getting used to a little more of the goodies than she had been having. The other day she had to go to the cardiologist to get clearance for the 2nd angio. That's a whole other story. The cardiologist said she had a weak area in the lower part of her heart. She didn't have to go on drugs, but he recommended it. She said she'd try the diet and exercise first. 

However, this will be not as easy as it seems. She is a carboholic and gets real mean, real fast when denied their sugary goodness. I don't blame her for this, either. I wish she could eat whatever she wants and have no repercussions. It's just not that way. With MS, diet is really important. And now with a cardio problem, too...Anyway, I just dread bringing her food cuzz I know it's not going to be what she wants. With the PMS happening, she may throw it at me. 

It's not that I have it so bad. I am the one who is mobile, so I do everything. Everything that I can within my limitations. Sometimes I try to go beyond them and get into trouble overdoing it. Not being smart, trying to "flat rate" some job, only to fuck it up (like the barn roof...arrrrhhh). Anyway, who needed to hear this? No one. I just needed to vent. And not as in my blow off valve, which blows off all the time anymore. I need to try to make my wife's life as trouble free as possible and give her some kind of happiness, if at all possible.

Journal entry for July 4, 2010 (Raw Deal rap)

I get so sad when I see you there lying in bed
I go out, you stay home, you're all alone
Where you go when you're asleep I don't know
It's the only time you ever really seem at peace
The days are long, and it's so hard to go on
I go to work, come hoe and be a jerk
To my only one, my wife and my lovely
How the hell you got this raw deal
It's above me, I can't understand it
It's like all the bad things I ever did
Came back on you--that's how God planned it
And I can't see what His game is
I'm just tired of dealing with all His
Motherfucking lameness
Blameless--not me
Every one of His children fucks up eventually
So why'd He have to hit you so hard?
What was the point of all this meanness?
How do you tell the god of the Universe to suck your penis?
I could cry, but I'm done
I could try to outrun
My own death, my creeping mortality
Even though my own eyes see its certain eventuality

A dream Sharon made me write down (2010)

Sitting in bed, in a big warehouse with big picture windows. Outside were a lot of pine trees.

I was making labels and telling off a doctor about how they are not trying to figure out my problem. Except Dr. Gilkes, who ordered antibiotics. Urine tests that came back with blood in them were ignored by the doctors.

"You guys don't give a shit. If you did, you'd say 'Oh, my god this is a horrible situation. A 37 year old woman with all these problems.' You just want to slap a label on it and be done."

Journal entry for May 30, 2010 (Grass this green, you'll never see)

I'm living my life for a moment
That never ever arrives
There's nothing I can say or do
To make my dreams come true

And nothing you can do or say
Will make this pain go away
So I say hiding's good if I could
Just lie here and things would catch on fire

Nothing left of me or anything else
And nothing left for us to try to tell ourselves
I can't be, I cant ever be
Without you, don't you see?

I'm not me, not really me
Without you next to me
Life goes on, mow the lawn
Grass this green, you'll never see

And I can't smile or
Do much of anything for you at all
Makes me wonder what it's all here for
What the hell are we all here for?

The Liberation of Boopie

Our day actually began the day before with the home health nurse installing the foley catheter so Sharon could make this long trip. A nurse came out earlier in the day and installed one, but it got pulled while she was sliding to the potty chair and was causing her pain.So we took it out and we called them out to put a new one later that night and that one was ok. The next morning had Sharon waking up at 3 and me at 4 to get ready for the big day. A transport company was to arrive at 5:30 to take us to the IR for her venogram/procedure. They arrived at 4:45 and we were nowhere near ready. She couldn't make the transfer from the manual chair to the power chair. So we brought in the local fire dept by calling 911 so she wouldn't wind up on the floor. It is called a lift assist or something like that. Four big beefy boys came out and 2 of them lifted her by her legs and shoulders and got her into her chair so we could make the appointment. Her arms are sore from it still. This time the transport company driver didn't get us lost or make her airsick (hork) with their lame driving.

So we arrive at the IR without any further incident. She is taken into Radiology at 8 and given a neuro exam (pricking with paperclips from head to toe.) She had very little feeling from her knees down. They start an IV with mild sedation. At 9 she is taken into Radiology. They prepped her groin area, and set up their dropcloths and then she fell asleep. At one point she woke up and felt the doctors hand pushing on her groin. She didn' t feel anything else during the probing or the contrast injection and was asleep for this. When she next woke up the balloon was in her right jugular and she spoke up "HEY". The doc then ordered the nurse to give her more drugs and she was back out in a second. When she awoke the third time she says she hallucinated a bunch of bikini models in the corner of the operating room. She had no idea where she was, there was an X-Ray machine in front of her and the probe was still in her vein. The doctor removed the probe and the machine and they were done. It was around 12. After recouperating for an hour or so and getting some fluid and graham crackers we spoke to the doctor about the procedure. He said her left IJV and Azygos looked fine but there was narrowing in the right (which is smaller than the left) IJV. He said the flow was barely trickling on that side. There were 2 collaterals which were as big as the vein itself. He ballooned several spots to increase the the diameter. He was satisfied that normal flow was restored after this was done and the vein held up at least for as long as he was in there watching it. I asked the doctor if he wanted me to keep his name off the internet and he said "PLEASE". He doesn't want to be innundated and get a lot of attention for what he is doing. He said, however, that he spoke with his head neurologist about CCSVI and she said that if she had MS she would get scanned and angioed in a hot second. He said they know that this stuff is all over the internet and the lid can't be kept on it forever. Right now we are just at the beginning. We are just the 3rd MS patient he has done this procedure for. He did say that he didn't think this procedure was risky at all with just the angio and that he would wait on stenting any veins to see if A) the procedure had any positive effects B) a relapse of symptoms and restenosis occurred. So did she come flying off the table singing an operetta? Nah, she was too wasted on the "conscious sedation" they gave her. In recovery she was pretty tired but came back around after the drugs started wearing off and was quite talkative. Her neck was a little sore, but her arm hurt worse from the firemen. She said her legs and feet didn't hurt nearly as much as before. From a 4 on the pain scale to a 3 or a 2. All in all it wasn't too bad of an experience for her. Her last dentist appointment was probably more painful. But then we got home and in trying to transfer onto the manual wheelchair to the power chair once again she wound up on the floor. (Two days ago a home medical equipment company delivered a Hoyer lift, but it won't work with the power chair because the base is too narrow to accomodate her power chair...) We employed the Hoyer lift (still waiting to be returned) and lifted her off the floor and onto the manual chair and off to bed she went. Even though she fell (she was exhausted) the time on the floor and the amount of freaking out was at a minimum as compared to other floor events. While in bed she experimented by laying her bed down flat. She hasn't been able to do this for years without experiencing vertigo and nausea. She tried it and felt fine! She said she could tell something is different. I can't wait to see what tomorrow will bring after she has had a good nights sleep.

later

Well, she awoke from her nap of an hour or so and said that her vision has improved slightly and that "things seem clearer". She is not having to strain to see the computer. Just tilting her head back before would make her dizzy now she says it is no problem. Her left hand also feels stronger. Makes sense, right? Right brain, right vein -- left side of the body. I feel like I am watching a little baby seed about to sprout can't wait for it to hurry up and become a tree. And start flying around singing opera. But as of right now she says "I do feel better". I guess someone is going to lose that bet!

list of improvements: (day 1 and part of day 2)

more feeling in fingertips
more feeling in legs (can pass the paper clip test now)
better strength in left hand
improved vision
easier to transfer to potty chair
fatigue is less
arm strength is better -- able to lift self on potty chair (pushups) with arm strength only
voice quality is stronger
feels a lot more clearheaded
oh, and get this--she took a hot shower for the first time in 5 years and it felt great--she didn't even notice that the water was nice and hot!
transferring back to the bed from the shower chair was easier
breathing feels less labored -- hasn't felt the need for the O2
no vertigo when leaning head backward or lying flat
freakout mode not happening when feet are on the floor
standing while holding self on wheelchair for 30 sec without 02 (pre procedure was 15 sec w/out O2 and 30 sec with O2)

areas still of concern:

still having issues with bladder -- peed bed during the night LOTS of urine
some double vision when turning head
right leg twitched a bit during the night
feet still turn purple when on the floor, but not as painful
still falling, leg and ankle muscles atrophied and need rehab



It's a nice day outside, we might see about getting her into her power chair and going for a cruise around the property. More on this later.

Ok, it's later. I can see that this is going to take time or we will be in for serious setbacks. We tried unsuccessfully to get her into her power chair. The floor. Again. This time no Hoyer lift (they came and took it back this morning). So we placed a sheet under her and she scooted all the way back to the bedroom on her butt. Once there after resting and O2 we did our famous "get a leg up" procedure and kind of rolled her onto the bed. This is a person who has been doing not much of anything but bedrest for 2 years. She has no calf muscles or ankle muscles. We need some very gradual strength building exercises that she can do in bed to get her back to being able to get into that power chair. It is a very difficult transfer for her. Until then, we have a new Hoyer lift coming with better accessiblity. She is now recovering in bed, and her recoup time is less than previous floor routines. We need to keep her off the floor so I guess I will have to be the voice of reason when she thinks about trying stuff that is still too difficult. At least she wasn't on any blood thinners so she won't bruise up or bleed. It is just so sad to see her try so hard and still wind up on that floor and be unable to do much of anything to stop it once it starts to go south.


I don't want to eat my words so we are just taking it as it comes and making notes on what is and isn't happening. Despite the setbacks I still have to say we are both glad we did this. People: never, ever give up. Even if it is just a little bit of an improvement it is worth doing. She has a lot of rehab to do, but maybe now we can start to go the other direction (while staying off the floor).

Emptiness

This should go in 2010. It was a draft for years and then I looked at it and the date changed.
________________________________________________________________________________

Who am I kidding? To be empty you have to at least have the capacity to be full of something -- I suppose being full of shit counts for that then. But seriously...I have this impending sense of doom and an uneasy feeling of "do I even exist?" In the next few days Sharon (still my wife) is going in for angioplasty to correct her CCSVI at _______ hospital. I was so full of excitement in the weeks leading up to this. Partly because I will be taking vacation time, but mostly because I so long to see a turning point toward her recovery. Now, as the day approaches, I have nothing but a numb feeling of fearfulness.

Part of it could be all the crazy things she has said to me in the past few months. The whole Charlie thing. The whole "if I get better, I'm leaving you behind" thing. The whole "you're an asshole and I can't get far enough away from you...oh, by the way you're neglecting _____ ." I guess that's not emptiness, that's anger at feeling mistreated and under-appreciated.

Oh, and she found out about this blog so anything I say, I may as well say to her face. It's just that I hate confrontations. And yet I am no good at hiding my "empty" feeling. She'll catch on and ask me what is up.

I read your email, that's what.

The whole Charlie thing. The "I love you's", the dirty talk, the same Josh Turner song she emailed to me, she emails to him. I feel like whatever it is that she says to me she is also saying to him. Only, except the negative stuff. That she reserves for me alone. How lucky I am. 

One part of me is the understanding guy that says "yeah, she has a pretty lonely life and wants to have attention," which this guy gives her by way of emails and phone calls (when I'm not home). I should be the bigger man and ignore it because certainly this 70 year old MARRIED man in Minnesota is not a threat. 

Except that he is... He is feeding her all kinds of bullshit about how he loves her and will care for her (yeah, what about your CURRENT wife?) He has promised to buy a ranch and move her out there, and he wishes he could hold her and kiss her and lay there next to her and on and on...

And she is enjoying it, as is evident by her responses to his emails. If she were not disabled and in dire need of help, I think I would be more likely to make it a big issue, like, "choose bitch." But when I hear some of the things she says to me when she is PMSing, constipated or having an exacerbation, well, I know that she is not in her right mind.

I get to feeling so bad, either way. If she is so messed up that she thinks this guy is something, I have such sadness and pity for that. And if I am so fucked up that she thinks this guy worth risking our marriage over, then I am also saddened by this. Am I truly worth that little to her?  

I don't think that just because a person is physically unable to leave a relationship, that they can't have checked out already. 

I hate what our life has become. I can do chores, I can do projects, I can do the work week, I can even do the nursing duties and even enjoy some of these things, because I feel needed. I feel like I can't be doing wrong, when all I'm doing is good and necessary. 

I just can't stand the thought of her carrying on with this guy and getting all titillated by this ex-boyfriend who can't let go of a memory. I can't hide my feelings very well and this is eating me up.

Plants need sunlight, water, soil and room to grow. But if they have all these things they are not yet guaranteed to be healthy and happy. They could be lacking some micro-nutrient or have some unwanted pest that eats them up.

My Boopie plant is withering.

When she revives she can be a prickly rose or a tender blossom. I never know which I am going to get.

I am most assuredly to blame, as I am not providing her with some vital element that she needs. Else, what would she see in this F'ing aging bullshit artist.

Last night we tried for more than an hour to untangle her hair and wound up cutting it and still not getting all the tangles out. She wants to shave her head. I know she will regret it if she does.

In the weeks ahead, post surgery, much may or may not happen. I have a dream of her coming out of it on the operating table and everything being rectified like some fairy tale happy ending. Like a dream, she will arise from the table, rip off the hospital gown, and be wearing her wedding dress. 

She will swing her legs down on the floor like nothing and say "let's get out of here." And we will go to Fort Bragg or Half Moon Bay and walk on the beach as we did before. And this is when I get all choked up.

Ah, not emptiness...just terrible sadness.

Robot Song

Since it rained, since it rained the Robot

Got left outside the shed

Got left outside the shed

Thought it was once ingrained inside my head

Despite of what you said, he got

Left outside the shed

Now his wheels are rusty

Since it snowed, since it snowed the Robot

Got left out in the cold, got left out in the cold

His arms no longer fold

And his batteries are old

I never cared much, truth be told

Despite of how you scold

And how you never trust me

In the spring, in the spring the flowers

Burst through the Robot’s head

His legs, made out of lead

Sink in the flower bed

And I wake up, I wake up, I get out of my bed

Put the Robot in the shed

Put the Robot in the shed

And you say you love me

A Barn, an MRV, Oxygen and a Blow-off Valve

So, this is 2010. I am still alive and married. My wife still has MS and all its craziness. She has moments of clarity and moments of being a "raging cow" (her phrase, coined in a "moment of clarity"). Most of the time she is somewhere in the middle.

As for me, I have a blow off valve which is like this: mostly I curse under my breath, and it keeps me from saying the things out loud that I would say if I didn't relieve the pressure/stress. It is the "evil caregiver" in me that makes me cuss. I have to harness all my superman powers to not get so angry at the MS for stealing my wife's brain that I punch holes in the walls. For her I put on the "yes, honey" routine, so, in that sense, the superman business is an act. In the sense of my daily routine, it's just that, a daily routine. The routine involves me doing everything and watching my wife slowly slip away.

So, we are putting a barn up on our property in hopes to get some animals. My wife loves horses and hopes to one day have one or two. It is so ironic that we moved to this place 2 years ago so we could have animals, and then my wife's health deteriorated so rapidly that now she barely makes it out of bed in a day. Anyway, the barn foundation is costing us a fortune and is going to be so well built that it will be a shame to put up our pipe panel mare motel on it. It deserves a 3 story big 'ol metal building. But we will have animals even if I wind up doing all their care and maintenance.

Yesterday after a shower she couldn't make it back into bed and fell onto the floor while transferring from the shower chair to the bed. I get so frustrated watching her on the floor crying. A family friend who is a retired doctor let us borrow an oxygen generator. While she was on the floor (I cannot lift her up, she weighs 300 lbs) I gave her the O2. It revived her enough to get on her knees and then up onto the bed. It seems that all her problems stem from a lack of brain oxygen.

So she had an MRV at UC Davis, and the doctor found a narrowed right jugular vein and a larger than normal left jugular vein with collaterals. The doppler scan showed very little flow on the right side. She has an appointment for an angioplasty some time in mid-April. By my birthday we will know if this whole CCSVI thing holds any water. Keeping my fingers and all other appendages crossed....Stay tuned.

Journal entry for _______ (some time in 2010 "Maybe")

Maybe if I poke, my eye
With a screwdriver I might get to the root of it
Somewhere in my mind--oh
Maybe