*Watch past me saying “CrankyPants out” to see some pictures! 😉
All of last week was spent on the phone with Dr.’s, nurses, or other medical people. It was crazy. A lot of it was arranging this biopsy. To make a long story short. I’m being admitted to hospital next Sunday (Oct. 28th/18) and then transported via ambulance on the 29th, having the test done and being transferred home the same day. They won’t admit me for a night to recover. The Ambulance dudes wait until my procedure and recovery are done and drive me back. Crap. That’s going to be one hell of a long painful day.
I am grateful that the doc went to bat for me and arranged this transport. I have to give her that.
Because the drive is so long they had to rearrange my biopsy time. They are usually done at 7 am no exceptions. There had to be an exception made as it meant I’d have to be driven through the night and then driven back same day. The ambulance dudes are not allowed to do that. I’m glad. That’s dangerous. However that’s what they’d expect me to do if I didn’t have this back injury. So it was either get flown by air ambulance which I was hoping for as it would have made a lot shorter of a day, or change the the biopsy time. They changed the time dammit. Now it’s at 1 pm and I have to be there for noon. It still means I won’t get home until late at night. I hope I don’t have to get Mr. CrankyPants out of bed on a work night to come get me. Something’s got to change up here with this medical system. It’s not fair that they expect sick people to make 10 hour trips, and have painful procedures all in one day.
If Mr. CrankyPants were taking me it would have been a three day thing. Drive one day, procedure the next. Stay overnight and drive home the next. Who can take off that much work?! He’s already taken off work for me one day with my back injury and one day for another recent trip to Edmonton. I know this won’t be the last and it’s all too much.
My stress levels are through the roof.
I found out that a rather urgent brain and spine MRI referral for me was never sent. Now I’ve been on the phone back and forth with my Neuro’s office about that. The neuro issue is getting worse. I had a tremor which is still there to some degree, and now weakness that has traveled all the way from my wrist up my arm. I was told it was possible the meds I’m on could cause some things. I found out after a call from my Rheumie last week that my Neuro doesn’t think what’s happening is from the meds. So..that’s scary. Not only that I was also told said meds can unmask MS. I need to know what’s going on. I’ll likely be back on the phone with the Neuro’s office tomorrow. I’m being tested for MS.
It feels like my whole life now is consumed with medical everything. My only outings are Dr.’s appointments, tests, and maybe errands. I need some balance but I’m not sure how to navigate my way to it. By the time I get done with all the medical shit, I’m tired and I have no energy for a social life. I’m always in pain, and I can’t eat what most people can.
How do you find balance with chronic illnesses? Is it possible?
I will say Mr. CrankyPants took me out for dinner last night. That’s not easy for him or I. He has to gage how I’m feeling. We have to find a restaurant where there’s food I can eat. It’s stressful too. Having said that we did find one and we had a nice time. We wondered around a couple of stores after. It’s very rare that I’m in town where I’m not in a mad rush. Last night was not a mad rush.
Today the weather was beautiful so we went twice for a walk in our conservation area. The second walk I did without my crutches for the fist time in a week.
I also went into town on my own for a short time today to find some new P.J’s and slippers for the hospital stay. That was also not rushed and really nice for me.
Having said that I don’t have the energy to get together with my friends. I feel so bad. I feel as though the world is going on living and I’m just watching it pass me by. Thankfully the friends I have are very understanding but how long can I keep them if I rarely get to spend time with them? I can’t keep up with the things they can do. I don’t want to hold them back. I feel like a burden. (Not that they make me feel that way at all.) I just do.
And now as the Christmas season approaches I dread it. I dread invites to parties. Mr. CrankyPants is already invited to one in November he wants me to come. Again, how do I keep up? I can’t eat the food that will be there and there’s pressure. I may bow out of it. It’s his friend and I think he needs some guy time without me once in a while. He has zero social life. I don’t think he needs me for this one. Last time I went with him to this friends party I sat there all night while they talked about their work. His wife was running around trying to find food for me to eat which I didn’t need but she was insisting. This after she had spent days cooking a huge spread for this party. She wasn’t supposed to find out I couldn’t eat what was there but somehow she did.
How do you guys deal with the holiday celebrations?
As you can probably tell by my blogging this is a journal of sorts for me as well. I hope you don’t mind that.
How are you all doing?
Better Days & Rainbows,
So, yesterday as you may have read I was at the Internist office.
Today, I went for part one of a TB test I have to get in hopes of qualifying for a biologic.
Friday I have to go for part 2 of said TB test. The read. Then they are pressuring me to the get flu, pneumonia and whooping cough vaccinations.
Umm.. NO, notta, no way, not happening. Period. Wish “No thank you” was understood.
Anyway, I’m getting so tired of my only outings being for medical reasons. Since there’s always a wait, I have no time for anything else, except maybe on a day where I don’t have a medical something, grocery shopping. Such fun.
I hope Friday is the last medical something for a couple of months but I don’t hold my breath. We all know how unpredictable autoimmune disease is. It totally blindsides and messes with ones mind.
Maybe if it’s not too hot or sunny later (because the disease doesn’t like heat or sun), I need to get out for a walk with the dog. I may be just a bit Cranky. 😉
Green grass & Beaches,