“you are right, i’ll move on but my lungs feel so small”

by kaleidegirl

more health shit.

i remember when i only saw my psychiatrist every 6 months just to check in and make any changes to my meds if needed. for a long while the only changes were a decrease in my meds. now? well i had to find a more competent dr and was seeing him every two weeks while he tried to find a solution to this insomnia thing. yesterday he prescribed a med for my anxiety that can take 4-6 weeks to do anything for me so i won’t see him for a month. everyone is out of ideas. even the sleep clinic was very little help. i’m scheduled for a sleep study in January but they don’t really think i have sleep apnea, just ruling it out to be sure. they suggested therapy which i’m already doing. she has been trying to help me with this issue for months.

i remember when i only saw other doctors when i needed to. i remember being annoyed when something would become an issue that took what seemed like forever to figure out and resolve. even with those annoyances i was fairly healthy. i didn’t know it though. i took that health for granted.

it makes sense that having a terminal illness would result in many doctors appointments. still, it wears you out. i was supposed to get a break from all these appointments after today but then my transplant dr referred me to see a liver specialist. so with support group that is two more trips to Ann Arbor this month. I’ve already been out there twice this month alone.

so all of this insanity on top of near crippling anxiety and insomnia and being sick, needing oxygen, stressing over my weight, all of this. it is breaking me down.

i’m trying to be grateful for how well i am doing despite my illness. i mostly only need oxygen when i’m active and to sleep, well to toss and turn all night. i was in the shower yesterday and got a little short of breath which reminded me of the days when i had to have a good amount of oxygen to shower at all. you would be surprised at how taxing the simplest things turn out to be when breathing is something you don’t do very well. the last time i came home from the hospital i needed a seat in the shower in addition to a high amount of oxygen. i needed to use a mask because a cannula didn’t provide enough oxygen for real activity. here i am being able to shower without oxygen. i should be grateful because i could be much worse off. i know firsthand how bad this disease can be. i should be grateful for how well i am doing now because this disease only gets worse. i’m on the transplant list because without a transplant this disease will kill me. i suppose this is the closest thing to “remission” that we get.

so i’m trying to appreciate this. this “good” health despite my illness. i think it would be easier if i wasn’t so anxious and unable to sleep. these things are especially frustrating because there is medication that would help both things but because of the impending transplant i can’t take them. i have these meds but they just sit in a drawer in the bathroom taunting me.

today i got out of bed with horrible anxiety, the new special torture these days. yesterday it was so bad i was afraid to have any coffee. today i said fuck it. i can’t handle caffeine withdrawal on top of everything else and having coffee is part of my morning routine. the anxiety calmed down rather than getting worse. it is still bad but slightly less bad. i am grateful for this and trying to see today as a better day than yesterday.

finding out the roads i have to drive on today are bad has spike my anxiety again but i’m trying to redirect that anxiety. telling myself they will be better by the time i leave. today needs to be better than yesterday.

i’m trying to appreciate what good i have going on.

-i could be much sicker than i am. needing more oxygen. too weak to exercise or leave the house. needing even more medication than i do. suffering awful side effects from the meds i do have to take.

-if these new medications keep making me sick to my stomach, killing my appetite, then i won’t have to stress about losing weight like i have been. it sucks. its not a good way to lose weight but its better than the alternative. so when i can eat i don’t have to stress about what i am eating. its the little things right?

-my husband is awesome. he puts up with so very much. he takes care of me. i might not be here if not for him.

-my daughter is happy and healthy. she has grown into an exceptional young woman and i’m very proud. we are going to have a lovely holiday. i’m so glad she will be here for all of our usual traditions and fun.

-we have great health insurance so its easier to handle the medical bills. we have a really nice home and happy marriage. i have a good car, the nicest i have ever had. money is tight for me but the important things are taken care of. i don’t have to worry about keeping a roof over my head or the utilities being shut off. those days are long behind me.

now i’m feeling guilty because i am sitting here struggling to add to this list. i suppose my worries and fears and anxiety and lack of sleep are overshadowing things.

today has to be a better day. i truly need it to be.

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