it’s not really about the what type of cheese to buy (or only a title I will understand)

I’ve been trying to write a blog post here forever but I always give up half way through because I can’t ever seem to make the words come out like I want them. It is kind of a theme really… I can’t post online what I want to say… no worries I can’t talk to people in real life about what I want to say either.  Not because I don’t want to, but because I literally cannot find the words.  I open my mouth and… nothing.

But here is my attempt.

A strange bit of normalcy occurred when the chest catheter was removed.  As quickly as it could my mind wanted to block out that it had ever happened.  Although a box of the unused suction bottles sat in the living room forever because a whole new order of them got delivered right before he had it taken out.  Finally looking at them was freaking me out so I opened them all up and saved the extra gauze and tegaderms from them because that shit could come in handy and toss the bottles in a separate bag and then into the trash.  I was worried that the people who pick up the trash might feel uncomfortable seeing an open box of medical equipment laying out there for them to pick up, even if it was unused so I felt compelled to shield them from it.

Anyway… it is a very fragile state of normalcy because there are always reminder that life isn’t normal and to whatever extent never will be again.  It doesn’t quite knock the breath out me anymore, it’s just like a low grade stinging sensation.  I have sometimes wondered that without the chest tube as a constant reminder if sometimes I am more apt to actually try to forget it for longer periods of time than in the beginning and honestly I don’t know.  I am worried sometimes that I fight with denial but it isn’t denial so much as it is that I just want to figure out how we live with it, because it is all here and in spite of it I want to LIVE.  I want him to LIVE.  Tonight I was telling him about an internet acquaintance of mine who has had 2 kidney transplants and is currently going through a rejection episode and in spite of it all she posts the most hilarious stories about the events in her life and has proclaimed “I may be sick but I have fun.”  It is a reminder that in spite of the shitty stuff life throws at you, you can still thrive in spite of it all.

I don’t think it is my place to share what he goes through emotionally here.  I don’t think he would appreciate me doing so.  So it is sometimes hard to be able to share completely openly here stuff that I am going through too because it ties into us both doing emotional battle with this.  I will share that before the last hospitalization he fully admits to being in a state of denial, which was no surprise to me.  And then it was immediately after he was left in a great depression, the chest tube was the realization.  He said it was the Alpha I support group that I took him too that lifted him up out of it (the same one which I panicked almost all the way through since they were talking about transplants that night, I was afraid I had scared him and made it worse.)

He has changed his lifestyle completely. He’s lost a ton of weight, his diet makes me envious, he refuses to put anything unnecessary into his body (he wouldn’t even take a doctor approved Tylenol for any soreness after the tube was removed) and he participates in a variety of online support groups.  What he didn’t anticipate though is the fact that the lifestyle change would bring up other emotionally based issues that needed to be confronted as well so we’ve been working with that.  But he’s at a place that I never imagined he would be at so quickly… both weight/lifestyle and emotionally preparing for what lies ahead.

Last week he made an appointment to have some fluid removed, he thought it might be time, based on what I’m not sure he wasn’t having any respiratory symptoms.  When he went in they did the ultrasound to see where they needed to place the needle, all that stuff.  The ultrasound guy found no fluid to remove.  He showed him the ultrasound and told him what they looked for and that none was present.   I thought this was amazing.  It seems like the combo of diet and meds is working great for now.  I hope so much that it can keep up like that for a while.  That would be fantastic.

At the beginning of the month I did my Alpha I blood test that the University of South Carolina provides for free for research purposes.  They will tell you your phenotype if you consent to being followed up on for life if you have Alpha I. Obviously I have no reason to suspect that I would have Alpha 1 myself but am doing it for interests of wanting to know if I am a carrier.  Because if I am then of course the sliver of hope and possibility for biological children between us goes completely 100% out the window.  There is this part of me that feels like maybe I am.  I don’t know if it is just pessimism or something greater.  I’m right about weird shit lately.

If you’re wondering

Image

M is normal… people who aren’t carries of Alpha I have an MM phenotype.  People who are carries are typically Mz.  People who have Alpha I are zz.  There is also another variation, I believe it is S… people can be Ms or sz but it is my understanding that these phenotypes are rare and and they seem to behave more like Mz..people who are just carriers, which usually means there isn’t usually an increase of lung or liver disease as long as one refrains from smoking, drinking, and other things that can damage lungs and liver.

But the point of the good old Punnet square is if I were a carrier… our children would have a 50/50 chance of having Alpha I.  And the 50% chance is too much for me.  Regardless any bio children would 100% be carriers and I haven’t decided how I feel about that yet.  I’ve been waiting to get my own test results back.  They said it could take up to 6 weeks but I really wish they would hurry up and send them because I think about it constantly.  He likes to say “well you probably aren’t, there is no reason to think that you are” but it’s not like we ever dreamed in a trillion years he would have it either.  You just never know.

At any rate the whole kids thing is a major cause of my near constant low grade depression.  Literally right before we found all this out we had decided to start TTC.  I was so fucking happy and excited and yeah…. Now I can barely log onto Facebook anymore because it is too hard to see pictures of everyone with their happy little families.  Pregnancy announcements can take me out for a whole day.  I know that’s probably not healthy but it is what it is.

On an unrelated note I’ve been trying to find a job and it has crushed my self esteem (do I even have any of that stuff left?).  I was just kind of going with my resume as I had it since I haven’t done anything noteworthy and after applying to like 40 jobs (no I’m not fucking joking, I was applying for like 5-6 a day, ones which I thought perhaps I might be at least kind of qualified for) I realized it was a terrible idea and the way the job market it I am not going to get jack shit so I have one more option left and that is to just revise it, leave my old ass job history off of it because it is hurting me more than helping me, and just keep trying and in the meantime I really really really fucking need to work up some motivation to do something even if it is for absolutely no pay… volunteering or something, just anything to gain some extra shit to put on a resume so maybe someday I will qualify for some sort of job that isn’t shit.

But overall I feel like I have no idea what I’m doing and being an adult is failing miserably.  I like to believe that as shit as the past decade of my life has been perhaps the next decade can promise something better but clearly we are not going to be off on a good start.

I don’t walk around depressed 24/7.  Some days I am happy.  Sometimes I am not.  Some days I am this or that or whatever.  I have always felt too much and that continues only with a new element thrown into the mix.  I try to be encouraging to my husband.  I support him endlessly.  Sometimes we cry together, but we still do a lot of laughing together too.  I am so amazingly proud of him for taking all that he is able to control into  his hands, even though I know how hard it is for him sometimes.  I try to bring things to him that I think will be helpful.  Teach him meditation…mindfulness.  I know that man loves me because for Valentine’s Day I made him a mala and he wears it every single day.  Heh.

I hate that we’re going through this but I have a gift that a lot of people don’t realize until it is too late and that is truly realizing how precious every day is, the things we share together, the connection that we have.  I find it nearly impossible to take it for granted anymore.

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