but i know that i can make it as long as someone takes me home…

by kaleidegirl

i kept having trouble finishing blogs and i don’t like saving drafts and going back later. so i didn’t even try for a couple days.

my anxiety has been a huge dark cloud impeding my usual speedy recovery. even my very short, light workout routine has been difficult to keep up with and at first a bit too much to even do. i have had so much anxiety over being home alone, worrying something will happen and no one will know and no one is here to keep me safe. i didn’t even realize i had these concerns. it was my fantastic mother in law who pointed it out and also helped me get through the hardest couple of days last week. i don’t know if she realizes how much she did for me just by helping me see what the problem was and then offering all the help i needed to get through it…someone to understand and just sit with me if i needed it. i could not possibly ask for more accepting and loving in laws. (on both sides of my husbands family) almost every time i have been in need of help with even the smallest thing they have been there.

the anxiety still hangs over me but is a little lighter not just because of knowing the problem but having solutions. i have my mother in law just minutes away even if all i need is someone to sit with me to help me feel safe and we have signed me up for a home medical alert service/system. the equipment will arrive any day now and i hope it offers, i’m sure it will offer the peace of mind i need to get through my days alone at home and fight this anxiety so that i can really start recovering what little lung function i have.

i have zero, none, zilch, zip shame in the things my husband is doing to keep me safe and keep me home. i have a seat in the shower and i’m getting a “help i can’t get up” system. things normally reserved for the elderly. the guy who got me started setting up and ordering the medical system was so surprised at my age after learning why i needed this service. he also said he would keep me in his prayers for as long as he could remember my name. i’m not religious but i pass no judgement and i am even overcoming my personal resentment of it. ( that is a whole post on its own with the recent developments in my world regarding religion) i greatly appreciate people thinking of me when they pray, something they take very seriously and do with great love. so what is i am not even 40 and have to worry about falling or being unable to breathe and needing some kind of help. my pride is so low on my list of priorities. my health and safety are my very most important concerns right now.

despite my anxiety i am still making some progress. just not as much as i normally would have by now. maybe i’m wrong. my memory often betrays me. when i first came home from the hospital in October on quite a bit of oxygen than before the biopsy, it only took about two weeks to very definitely only need 6L for activity and 4L at rest. i was not just close, i was definitely there and had the OK from the dr to bump it down. this happened again and again and faster and faster. back then i was so new and learning and adjusting and not sure what to do. no idea what to expect. mid November at my first follow up i learned it was very possible, very likely that i would need less and less oxygen if i kept up what i was doing so that was a big step. i feel like my dr was pretty impressed with my progress maybe because most people brand new to this sort of thing don’t know as much as i had learned and done in that short time. he underestimated my determination to be pro-active and do my part and fight the fight even i had my days of embarrassing self pity. i did also learn that i have severe scarring and that put me in a dark place. still, i left with some hope even if it didn’t show itself right away. hope that i might not just need far less oxygen but maybe someday none at all if only for awhile, months, years, anything was possible. a lung transplant was far from needing to be even discussed at that point. clearly my dr is not so optimistic these days but it is not the end. this is me. transplant or not i will fight for every minute, every hour, every day, every week, every month and every year i can possibly get. i will see my daughter get married and be there when she becomes a mother and i will keep myself healthy so i can keep up with my grandchildren just as i have always planned due to being such a young mother. i will grow old with the love of all loves of my life and i will do it with all the strength and grace i can muster.

(bet ya never thought this depressed goth girl could be so optimistic eh? i’m full of surprises)

so my progress since the latest hotel hospital stay. i will tell you and i will show you so that you can get a much better idea of the gravity of it for me.

in the hospital i was on two different oxygen machines. one with a cannula (the thing with the prongs in your nose) at 15L, the highest the machine goes. i also had to wear a mask. a non re-breather mask turned up to 15L as well for when i got up, which gave me almost 100% oxygen but definitely the most i could get aside from being put on the uber high flow machine which i had been on and finally weened off of which would have been the next step before a ventilator. i wasn’t going to go through that again or rather, put my husband through that again. so here i was a couple weeks ago in the hospital…



i had just used this neat wash your hair shower cap. i had to wear that mask because of the exertion of washing my hair even while just sitting in bed. it also really sucked that i had to brush my teeth in bed with a cup of water and basin. standing at the sink to do that became my first little goal.

this is me yesterday afternoon. i had tried wearing lipstick when i went out earlier that day but it sort of rubbed off a bit onto my mask and was eventually kind of a mess and pointless. but it felt good to have make up on otherwise.


i started the day using the mask still and then realized i left the hospital with just the high flow cannula at 15L so why was i needing the mask? i was hindering my progress i’m sure because i was fine when i switched back to just the cannula. even if it is the high flow and i still need 12-15L for activity. I’m down to 6-8L at rest. usually 8 when i want to get up to raise it for activity. i sit at 6L when my husband is home to adjust the machines for me.

so it was, it is a big deal to have that mask off all the time, not just when i am sitting. i really hate the fat face going on but i’m fixing that. i’m getting back to a healthy weight. the very best thing? i can wear make up for real again. if that sounds shallow and vain it probably is and i don’t give a waltzing fuck. life is not long enough avoid happyness in fear of judgement.

in other news

i’m going to play my piano today. if only for a few minutes.  it sits next to me everyday collecting dust and i’ve wanted it too long and it is too beautiful to be collecting dust.