Anatomy of a Long Day
I am quite aware we all have our own struggles with chronic illnesses. But I'm sure we are not too unique in the case that we all have experienced a long day of medical care. Whether it's infusions that take several hours, test after test, bad news and more bad news, or appointment after appointment, I'm confident when I say we've all been there and have done that. Recently I had a very long medical day. I wrote down my emotions and thoughts as the day went on so I could share with you later.
7.00 am, I am not pleased one bit. I may be up and out at this hour most of the time, but when it's for anything but work or school, I'm a zombie. Even then, I'm kind of the walking dead. The train had better not be late otherwise my whole day will be thrown off.
7.38 am, I love trains. Any time I don't have to drive is a good time. Just sit back, relax and watch the world go by.
8.29 am, The little cafe near the hospital has the best eggs ever. That and a great cup of coffee is probably the best way to start a long day. I know I'm in for a long day. I'm also a bit nervous because of some undiagnosed kidney issues. I don't know if today will be the day they can confidently say 'this is what's wrong,' or 'this is how we fix it.' Better yet, both.
9.34 am I'm waiting in Nephrology (kidneys) for my doctor. They ask for a urine sample as you're signing in. I really couldn't go, and they said it was fine and to wait until I could. When I finally could, I was in the exam room. I had taken off my shoes from when they wanted my weight and forgotten to put them back on. By the time I had realised it, I was already halfway to the toilet. Oh well, I wasn't going back for them now.
10.31 am, I had just come from nephrology. They're still not sure what's going on but want an ultrasound. My kidney problem is rather painful: I'm constantly getting side pains. Even though my rheumatologist is concerned, they're not. I hate how this is so much like my arthritis diagnosis: no one believed me or was concerned for years. Later when someone finally took me seriously we found out it was a serious disease. It's honestly frustrated and scary. And painful.
11.12 am, I just came from the ultrasound. It's typical that they let the radiologist on hand review the results before letting the patient go free (as if it's a prison). Usually it takes five minutes and he won't even come in the room. I was a bit surprised when he came in and seemed concerned with my kidneys. I heard him say rip, which can either be a rip like a tear. Or RIP on a gravestone. So exciting! Off to rheumatology.
11.33 am, I just saw my radiologist rush in asking for my doctor. Slightly horrifying. Slightly.
12.30 pm, My rheumatologist informed me that my kidney ultrasound appears normal. I love how my hospital works: It's a team. But anyway, the news is disappointing. I mean, it's good that it looks normal but that doesn't explain pain. I know they're not going to do anything about it now, just follow up. If you don't try and solve the problem, you can't fix the pain. I guess it's another pain I have to get used to. First joint pain, now flank pain. Nothing will ever work in my favour, I am sure of that.
My rheumatologist also informed me that my jaw MRI results were quite interesting. I have a slipped disc in one side of my jaw. Also, I have erosion of the joint from years of arthritis (I knew I wasn't going crazy with jaw pain!). And my jaw didn't develop probably. I was referred to the head maxillofacial and oral surgeon in the hospital and have an appointment in the next few weeks. Yay.
But in other news Enbrel is great and I have more range of motion! That's always a great way to end a rheumatology visit. He even said we can try going two months without him- that's amazing.
1.08 pm, The woman who took my blood was simply lovely, I always love having nice conversations. That always makes the closure to my hospital day better.
1.37 pm, Late lunch but better than none. I'm surprised I got out this early; There are times I'll go in at 9 but come out at 5 or even 6. I was starving and tired. Now, I just want to go home.
2.01 pm, Waiting for a train, I saw a really fit guy. He smiled at me and I smiled back. I probably looked terribly run down but I suddenly felt so much better about myself. He looked like he was about to say 'hello' when my train arrived, as did his. Why can't trains run on a less strict schedule?
2.10 pm, Trains are dangerous. They give you too much time to think about what's going on, but with little freedom to express these thoughts. It's on those rides I ponder why I'm sick. Or what's wrong. Or why no one can figure out what's wrong. Or do anything. All that sort of thing. If I can't just be healthy, I'd at least like to know what's going on and how to fix it. I'm terribly frustrated and aggravated. I swear I'm never going to be healthy because when one thing goes good, another thing goes wrong.
This is obviously not the longest day I've ever had. I actually expected it to be much longer. However it was long, and draining. It's funny how we go to hospitals to feel better but seem to come out more tired and feeling worse. But I did want to share my thoughts on the day, and how I felt. Moods and feelings fluctuate, energy is ever depleting but life goes on anyway.
7.00 am, I am not pleased one bit. I may be up and out at this hour most of the time, but when it's for anything but work or school, I'm a zombie. Even then, I'm kind of the walking dead. The train had better not be late otherwise my whole day will be thrown off.
7.38 am, I love trains. Any time I don't have to drive is a good time. Just sit back, relax and watch the world go by.
8.29 am, The little cafe near the hospital has the best eggs ever. That and a great cup of coffee is probably the best way to start a long day. I know I'm in for a long day. I'm also a bit nervous because of some undiagnosed kidney issues. I don't know if today will be the day they can confidently say 'this is what's wrong,' or 'this is how we fix it.' Better yet, both.
9.34 am I'm waiting in Nephrology (kidneys) for my doctor. They ask for a urine sample as you're signing in. I really couldn't go, and they said it was fine and to wait until I could. When I finally could, I was in the exam room. I had taken off my shoes from when they wanted my weight and forgotten to put them back on. By the time I had realised it, I was already halfway to the toilet. Oh well, I wasn't going back for them now.
10.31 am, I had just come from nephrology. They're still not sure what's going on but want an ultrasound. My kidney problem is rather painful: I'm constantly getting side pains. Even though my rheumatologist is concerned, they're not. I hate how this is so much like my arthritis diagnosis: no one believed me or was concerned for years. Later when someone finally took me seriously we found out it was a serious disease. It's honestly frustrated and scary. And painful.
11.12 am, I just came from the ultrasound. It's typical that they let the radiologist on hand review the results before letting the patient go free (as if it's a prison). Usually it takes five minutes and he won't even come in the room. I was a bit surprised when he came in and seemed concerned with my kidneys. I heard him say rip, which can either be a rip like a tear. Or RIP on a gravestone. So exciting! Off to rheumatology.
11.33 am, I just saw my radiologist rush in asking for my doctor. Slightly horrifying. Slightly.
12.30 pm, My rheumatologist informed me that my kidney ultrasound appears normal. I love how my hospital works: It's a team. But anyway, the news is disappointing. I mean, it's good that it looks normal but that doesn't explain pain. I know they're not going to do anything about it now, just follow up. If you don't try and solve the problem, you can't fix the pain. I guess it's another pain I have to get used to. First joint pain, now flank pain. Nothing will ever work in my favour, I am sure of that.
My rheumatologist also informed me that my jaw MRI results were quite interesting. I have a slipped disc in one side of my jaw. Also, I have erosion of the joint from years of arthritis (I knew I wasn't going crazy with jaw pain!). And my jaw didn't develop probably. I was referred to the head maxillofacial and oral surgeon in the hospital and have an appointment in the next few weeks. Yay.
But in other news Enbrel is great and I have more range of motion! That's always a great way to end a rheumatology visit. He even said we can try going two months without him- that's amazing.
1.08 pm, The woman who took my blood was simply lovely, I always love having nice conversations. That always makes the closure to my hospital day better.
1.37 pm, Late lunch but better than none. I'm surprised I got out this early; There are times I'll go in at 9 but come out at 5 or even 6. I was starving and tired. Now, I just want to go home.
2.01 pm, Waiting for a train, I saw a really fit guy. He smiled at me and I smiled back. I probably looked terribly run down but I suddenly felt so much better about myself. He looked like he was about to say 'hello' when my train arrived, as did his. Why can't trains run on a less strict schedule?
2.10 pm, Trains are dangerous. They give you too much time to think about what's going on, but with little freedom to express these thoughts. It's on those rides I ponder why I'm sick. Or what's wrong. Or why no one can figure out what's wrong. Or do anything. All that sort of thing. If I can't just be healthy, I'd at least like to know what's going on and how to fix it. I'm terribly frustrated and aggravated. I swear I'm never going to be healthy because when one thing goes good, another thing goes wrong.
This is obviously not the longest day I've ever had. I actually expected it to be much longer. However it was long, and draining. It's funny how we go to hospitals to feel better but seem to come out more tired and feeling worse. But I did want to share my thoughts on the day, and how I felt. Moods and feelings fluctuate, energy is ever depleting but life goes on anyway.
I am sorry to read about your jaw :( Is there anything that arthritis doesn't affect?! Has it settled or does it still give you a lot of pain? Sorry about the new side pains too...I hope they vanish! You have enough pains to worry about already.
ReplyDeleteThanks for sharing this Elizabeth. You are right when you say so many emotions can happen in one day in the life of a young patient...from worrying about kidney pains to smiling at a cute guy haha :) Keep well!
I'm beginning to wonder what arthritis doesn't affect as well! Unfortunately my jaw hasn't settled, and it's quite a bit of a pain. Since there is quite a bit of erosion of the joint, I don't think it will settle. Thankfully I'm seeing a specialist soon.
DeleteI really wanted to show people not only the many things a patient may go through in one day, but that it's okay if they feel overwhelmed or as if they're on an emotional rollercoaster. You keep well, as well! :)