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,