Another Kidney Update…

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.

Next…

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,

CrankyPants

Dr. Appointment Overload..

I’m presently scheduled or waiting to be scheduled to see 6 different specialists. Is it just me or is that insane?!

That’s what autoimmune diseases do. I hate it. I’m a CrankyPants about it.

Three of those appointments are the 10 hour round trip drive away. So…

Two weeks ago I spent a part of my week trying to work that out. I managed with my Nephrologist to talk her into meeting with me via teleconference in a town near me. Let me tell you that was not easy to do. I don’t think I need this appointment. This is just a follow up from a year ago. I’m doing better in this area then a year ago and ironically off the meds that were supposed to help. Things that make you go Hmmmm.. Anyway the doc won’t let me out of it because she’s expected by the College of Physicians to follow up after a year. Well good for her. That doesn’t suit me. If it’s not truly necessary to be seen, I have better things to do. Anyway, at least I don’t have to do the long drive for it. If I had to I would have just cancelled it.

Two other specialist appointments are this far away too. This was a whole other headache. First I was told one appointment was at a certain date and time. When I called to rearrange it, I found out not only did I not have an appointment at all but I was never referred. That was confusing for both of us since I had just got off the phone with the referring Dr.’s office and was told I was. So this took a number of other calls long distance back and forth to work that out.

Then I had to make a number of calls to try and arrange the appointment on the same day as another appointment in the same building. I found out I was also to have a test done I wasn’t told about. Sigh…

So now I have my Rheumatologist, and Neurologist appointment booked on the same day along with a nerve conduction test for the tremor and other neurological things going on. That includes in the same day the 10 hours of driving. A positive here, I’m getting in with the neuro in less than a month. That’s good.

It’s going to make me bad shit crazy. Or already has.

I’m also still waiting to hear about an appointment from the GI for my gut issues. Who knows when I’ll get that call.

Now, I’m being referred to a urologist as there’s something not normal with my stoma and I’m going to ask the doc about the extreme frequency I’ve had to live with for 20 years. I’ve not been seen by anyone even to check up on my stoma/ostomy in 18 years.

And if that weren’t enough…

My GP is referring me to an ENT. I can’t breath through my nose, never have been able to and no nasal sprays help. It doesn’t let me sleep. He said I have a mild deviated septum and swelling up there so he wants me to see an ENT. At least for once my GP took me seriously. That’s a first and it pleasantly surprised me.

The last two referrals mentioned are a 3-6 month wait. Argh! We are trying to sell our house which has been so frustrating so we may not even be here by then.

See what these autoimmune disease do? They attack everything and make us go to tons of doctors appointments many of which are sup-par docs to put it mildly.

And if we’re not seeing docs we’re getting tests done.

I feel like my whole life is consumed with the illness and the medical everything around it. I need to find some balance but I’m not sure how.

I’m overwhelmed with it all. I’ve been so slammed with diagnosis, complications, tests and appointments that I’ve had no time to process what’s happening with and to me. No time to cry. Just no time. The RA, Osteo and Rheumatoid diagnosis’ are not even a year old for me yet.

On a bit more of a positive note, Humira is helping me with the pain so I’ve been able to work out again. I love working out, getting that back for now anyway is a victory.

I went out to the conservation area this weekend for a walk with Mr. CrankyPants and my dog twice. We got to see two momma and two baby deer. I never tire of seeing wild life in the wild. That made me happy.

Being able to do those things helps but I really struggle to be able to get together with any friends because of my limitations. I just feel like I couldn’t keep up and I’d be more of a burden then anything. I haven’t got that figured out yet.

Right now one of my friends is working so hard at fixing up her daughter’s place alone. I listen to all the work she is doing and wish I could go give her a hand, but it’s not work my body would be able to handle more of. It’s work I just finished a while back doing to our own home and I’m just so done. I want to be there for my friends but how?!

How do you all cope with this stuff? Like I said above, I’ve had no time to figure all this out. How to find balance between the disease and living life.

That’s my reality right now.

Sunshine & Summer Days,

CrankyPants