Had another outpatient IV treatment yesterday so I am a bit more out of it than usual. I wrote this last night after the treatment.
This next window in will scratch the surface on being really sick and having to navigate the medical system.
Today is the day of my last treatment. I wake after crappy sleep and really just wanna hide under the covers. I want to feel happy it is the last treatment but it's the last one because it didn't work enough. I am grateful there has been some improvement, but wish it had helped the body to turn the corner to health. The next treatment strategy is to be unfolded soon. I loathe not knowing and waiting.
There is little energy to straighten the house and do needed chores, which means I will conserve the energy and let everything else go. Rides arranged. No energy to pack food. Will eat from a can combo'd with terrible hospital food. I wonder if I will get the wonderful staff or Mrs. Grouchy Pants. Either way it doesn't matter. My sweet friend will drive me and plans to stay until the meds kick in and I go to sleep.
First comes the IV. My nurse gets it in without difficulty and then the typical massive spasms that ensue for hours on end are manageable in comparison. Pre-meds taken orally because IV it feels like acid in my veins. Once everything kicks in I drift into sleep. Thankfully, as I am utterly exhausted.
At some point though I have to make two trips to the hallway to find cell reception to try to schedule a PET scan that must happen tomorrow and the records must get to Portland before the Friday appt. Countless phone calls to technicians, insurance reps and doctors (maybe 10 calls total) have gone into this. It's beyond hard to talk on the phone when the brain isn't processing information and the person on the other line often has little patience. Sometimes they are kind and patient, but not usually. Plus with having information processing so difficult, understanding and remembering what they say is not easy. I should have a notebook in my purse, but I don't. The plan is to start being a notebook girl.
Another thing that would make life easier is if a doctor's office would do something right the first time. I can't express enough that being sick is one thing, but arguing, pleading, defending oneself against rude staff is just unthinkable and exhausting beyond measure. There are kind people but I must they are the exception and not the norm.
Once authorization for appointments happens, they get scheduled, you arrange appointments, then you have to fill out paperwork, gather other paperwork to bring and intelligently get your thoughts together to make the hard-fought-for appointment worth it. All the while hoping you understand them, they understand you, and no mistakes or misjudgments are made. There is is also the hope that whatever the plan is it won't cause more harm than benefit. This takes a Herculean effort.
There is fear too, because doctors don't like if you are unprepared or not clear. To say it is hard to do both of these things when dealing with a brain with communication issues, is the mild understatement of the year. Breathing into the fear and trusting it will be okay is key.
Throw in the mix there may be fear or a degree of PTSD in seeing new doctors based on how you have been treated over the years. (More breathing and visualizing is necessary.) And then even telling supportive family about everything that happens is necessary and it is exhausting.
Calling, scheduling, arranging and going to the doctor is one of the most maddening and exhausting activities for a sick person. Let alone appointments that require travel in the car on what I have lovingly named the I-5, the I-Cry. I often feel too sick to go to the doctor. It feels like it's too much. Because it is.
But there seems to be no either choice.
I have such compassion for all the many women, men and families that have gone through this with themselves, their beloved parents or their children. It truly is challenging at one's core.
We try to make the best of it. Self talk that it will work and all be worth it, telling jokes, scheduling a visit with a friend along the way, but the reality is it's really hard.
I understand it's all necessary. I'm very grateful to have access to good medical care, insurance and family support. It's just exhausting and overwhelming at times. I will keep believing and trusting that this all will be worth it and I am on the path to wellness. That my body is doing what is to be done in order to heal. The honest truth is I'm tired of it all and really hope this chapter is coming to a close.
This next window in will scratch the surface on being really sick and having to navigate the medical system.
Today is the day of my last treatment. I wake after crappy sleep and really just wanna hide under the covers. I want to feel happy it is the last treatment but it's the last one because it didn't work enough. I am grateful there has been some improvement, but wish it had helped the body to turn the corner to health. The next treatment strategy is to be unfolded soon. I loathe not knowing and waiting.
There is little energy to straighten the house and do needed chores, which means I will conserve the energy and let everything else go. Rides arranged. No energy to pack food. Will eat from a can combo'd with terrible hospital food. I wonder if I will get the wonderful staff or Mrs. Grouchy Pants. Either way it doesn't matter. My sweet friend will drive me and plans to stay until the meds kick in and I go to sleep.
First comes the IV. My nurse gets it in without difficulty and then the typical massive spasms that ensue for hours on end are manageable in comparison. Pre-meds taken orally because IV it feels like acid in my veins. Once everything kicks in I drift into sleep. Thankfully, as I am utterly exhausted.
At some point though I have to make two trips to the hallway to find cell reception to try to schedule a PET scan that must happen tomorrow and the records must get to Portland before the Friday appt. Countless phone calls to technicians, insurance reps and doctors (maybe 10 calls total) have gone into this. It's beyond hard to talk on the phone when the brain isn't processing information and the person on the other line often has little patience. Sometimes they are kind and patient, but not usually. Plus with having information processing so difficult, understanding and remembering what they say is not easy. I should have a notebook in my purse, but I don't. The plan is to start being a notebook girl.
Another thing that would make life easier is if a doctor's office would do something right the first time. I can't express enough that being sick is one thing, but arguing, pleading, defending oneself against rude staff is just unthinkable and exhausting beyond measure. There are kind people but I must they are the exception and not the norm.
Once authorization for appointments happens, they get scheduled, you arrange appointments, then you have to fill out paperwork, gather other paperwork to bring and intelligently get your thoughts together to make the hard-fought-for appointment worth it. All the while hoping you understand them, they understand you, and no mistakes or misjudgments are made. There is is also the hope that whatever the plan is it won't cause more harm than benefit. This takes a Herculean effort.
There is fear too, because doctors don't like if you are unprepared or not clear. To say it is hard to do both of these things when dealing with a brain with communication issues, is the mild understatement of the year. Breathing into the fear and trusting it will be okay is key.
Throw in the mix there may be fear or a degree of PTSD in seeing new doctors based on how you have been treated over the years. (More breathing and visualizing is necessary.) And then even telling supportive family about everything that happens is necessary and it is exhausting.
Calling, scheduling, arranging and going to the doctor is one of the most maddening and exhausting activities for a sick person. Let alone appointments that require travel in the car on what I have lovingly named the I-5, the I-Cry. I often feel too sick to go to the doctor. It feels like it's too much. Because it is.
But there seems to be no either choice.
I have such compassion for all the many women, men and families that have gone through this with themselves, their beloved parents or their children. It truly is challenging at one's core.
We try to make the best of it. Self talk that it will work and all be worth it, telling jokes, scheduling a visit with a friend along the way, but the reality is it's really hard.
I understand it's all necessary. I'm very grateful to have access to good medical care, insurance and family support. It's just exhausting and overwhelming at times. I will keep believing and trusting that this all will be worth it and I am on the path to wellness. That my body is doing what is to be done in order to heal. The honest truth is I'm tired of it all and really hope this chapter is coming to a close.
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