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Terror of wish fulfillment and fear of self sabotage..

I have a date for double knee replacement.

This is exactly what I wanted.. what I’ve needed for over 10 years now and have been actively striving and hoping for since a particularly terrible Christmas vacation in VA, Christmas 2014, just before I got my wheelchair, and I was moving so poorly that I only left the hotel room twice.. the whole trip.. and as I lay in the the uncomfortable bed I swore that no matter how scary it got I had to do something to make things different..

But I’m complicated.. so hearing all the risks that go along with the operation, some of the scariest being that I’ll need a blood transfusion after, that he’ll need to shorten my legs to compensate for the contractures because if he doesn’t the nerves won’t be long enough and my legs will get gangrenous and maybe even need to be amputated, that I will need to be rigorous with extremely painful stretching and PT or I could end up right back where I started 6 months post op as the contractures are going to want to reassert themselves immediately postop.. etc.. scary af.. but what’s the alternative?

Choosing at just turned 40 years old that I want to stay trapped and increasingly dependent on an at turns indifferent or disdainfully angry spouse?  After my fall in the spring I spent about 45 days inpatient rehab, and Husband often sneers at me about how much I loved it there because I was “waited on hand and foot”.

Is it so wrong to want 3 meals a day? Help with showers? Assurance that I would have my meds on time every day, and never have to wait because Husband didn’t see pain relief or whatever other med as important as I felt it? Added bonus, I did PT 5 days a week there, did therapy for my psych stuff weekly, could have visitors with no need to race around cleaning up or making excuses cause I was too exhausted, round the clock nurses meant that I couldn’t take too much or little of any med and that was an indescribable relief as that is always a struggle for me in times of stress..

I am scared.. but now Husband.. after stressing how important this is for me and for us is all fixating on the risks and not even willing to have the smallest crumb of faith that this might change our lives for the better..

Part of me wonders if he’s acting like this because he’s afraid of me being healthier, more mobile, less dependent on him.. anytime weight loss, fixing my teeth and now my knees actually seems like it might happen he always gets all, “what about this scary thing or that possible complication?” “What about if you screw it up by falling into your old ways?”

Always playing on my worst fears.. always pointing out the things I hate most about myself..

Also feeling like a crappy mom today cause I woke up anxious and headache-y which really makes me want to be by myself, and for some reason Son was clingier today.. I love my kids.. one of the only times anymore I feel like I have a purpose is being a mom so when doing mom stuff feels like something I wanna get away from it kinda makes me hate myself a little..

All of these unknowns, pain and complicated emotion make me reach for something, anything to numb.. to feel other.. and I’m fresh  out of stuff like that..

I’ll end with a couple of songs..

For my kids.. full grown Daughter and growing all too fast Son..

 

and to Husband..and myself..

 

new start to the 90 in 90 count… thanks for reading my bubbled corruptions.. for being down with my sickness.. ❤

 

 

True currency..

That clip is kind of an explanation of one of the million things on my mind when I named this post. I think Lester Bangs is one of my favorite characters played by Philip Seymour Hoffman. He comes off like a total jerk at first but then there’s this scene and you realize that he’s pretty smart and not nearly as unfeeling as he might pretend to be.

So much on my mind right now. It’s been hard to focus everything that’s been on my mind together enough to make what I would consider a concise, worthwhile blog post so instead I haven’t been posting at all. But that isn’t good for me.. or the blog.. so instead of getting what I feel like is a neatly put together, well thought out and clever post, you are going to get desperately uncool word vomit from a hurting heart. Lucky you!

I’ve been reading a lot of my brother’s writing lately. Before he passed away I had never lost anyone that I was really close to so I didn’t have a clue of how death and grief truly worked. One of the biggest shocks to me after John passed was how losing someone in real life is so utterly unlike losing someone in the movies.I suppose that should have been self evident but it wasn’t.

In the movies people die and the people that survive them grieve, they might be sad or angry or even a little on the crazy side but eventually something happens. Something happens to make sense of the loss. And often if there was unfinished business between the dead character and the survivor there will be some sort of plot device that solves this problem. A letter the person wrote and left for the living one to find later or a journal or a video or some kind of backstory discovered through other characters all of which, while not making the person’s death ok to the one who lost them always brings them some sense of purpose or closure to the loss.

There is nothing like that in real life.. real loss. The sharpest edge of grief does get blunted with the passage of time but the person shaped hole remains. The senseless robbery of it all remains what it is.

I of course, didn’t know this when I first lost him, so my 1st inclination once I forced myself to accept the unacceptable knowledge that he was gone was to pore over all his artworks, blogs, journals, anything he had written, drawn or recorded on. I was s lunatic detective trying to piece together the reason why or way for it all to be okay again.

I now know that doesn’t exist in real life. Now, when I am reading and re-reading his writings I’m trying to create a timeline of his addiction. Trying to figure out more of what John’s story really was versus what we all led ourselves to believe it was.

So there’s that. I’m also working toward getting my weight loss surgery at Beth Israel. I just had my physical and I am going to be seeing my rheumatologist and asking him about a scooter or a power chair. Years ago when I asked him for one, he refused to prescribe it saying that I’d become dependent on it and lose my perfectly good ability to walk. I no longer have perfectly good ability to walk. I cannot straighten my back or my legs, every time I do stand and walk usually brings further injury and inflammation and also chances of falling. I really hope he will cooperate this time. I don’t know what else to do. I can’t participate in anything like this. I have very little quality of life.

I am only 38, but I have the limited existence of a much older woman. As a matter of fact, I know women close to twice my age that are more mobile, more functional, more an active part in the lives of their loved ones. I would rather be in the world using a power chair than not a part of it without one.

I’ve dealt with the difficulty up till now with a walker that has a fold down seat. It helps me get around without falling and if I need to stop and rest I have the seat there to do so. I guess my increased frustration with my lack of mobility stems from all this bad weather we have had lately. Snow and ice on the ground make it harder for my wheels to roll properly. The frigid temperatures hurt and I don’t have the ability to move through them quickly.

So I have more appointments and I have unknowns. My weight loss surgery process is slowly lumbering along. Maybe the wheelchair or power chair to come. Also, on a family level, there is this kind of will she stay or will she go thing going on with Daughter.

She moved back in when Husband got really sick, ostensibly to help me get through all the added demands of managing everything I normally do, plus Husband’s role, plus caring for Husband,etc, etc. The problem is she does the things she wants to do. Like she’ll cook which is awesome, but she resents even the smallest request to pick up after herself. I know this is because of the extremely touchy history between her and Husband. He worked her to death when I was too out of it to do what I was supposed to, or to stand up for her.

Plus we don’t have a room for her anymore. She moved out in 2013 and only in the past 6 months did Husband turn her bedroom in to his studio and give Son her bed and dresser. They are both just nondescript pine so there was no issue of Son protesting the hand-me-down. I think he secretly enjoys having things that used to be hers. When he misses her he reads all the little graffiti she wrote on there and tries to figure out all the little drawings.

As I finish this for posting I am battling some kind of allergic reaction. My lips puffed up like I’d had bad Botox and it became hard to draw a breath. I took some Benadryl and let Husband and Daughter know what was going on so in case I pass out or something else they would know what was up. I have no idea what the hell set me off.

I don’t have any medical backup for this but it seems like I’ve had quite an few allergic reactions since my splenectomy. So I’ve been through this enough times that i know that all these episodes mean staying awake after taking mass quantities of Benadryl. The waiting is weird because of the Benadryl has me sleepy and thinking weird non consecutive thoughts.

Great! I had Orange is the New Black on in the background as I typed this and now Husband is being all judgmental about my viewing choices because of Natasha Lyonne was swearing her head off the second he came in the room. I really do not need crap from him right now.