I am taking 60mg of prednisone every other day. It’s not long term – about six months until my Imuran kicks in. The prednisone is protecting me (or trying to) from another attack.
To say that my life hasn’t been emotional lately would be an understatement.
I am a voracious reader, but I have found lately that my retention is nil. I try, I really do, but I’m so darn tired that I’m not retaining information especially when it comes to learning about this disease. I’m also trying to get as much done while I’m healthy so that “if” I start to decline, I don’t have to worry about legal things and planning for my death.
It’s been hard.
Filling out hospice paperwork is something I hope most people never have to do. I sit at my dining room table filling it out and I have to walk away after just a few sentences. It’s crushing to think that I could die soon and what’s more crushing is to think that my kids may not have concrete memories of their mom. I’m trying to work on that right now (hence the Pennsylvania trip I need to post pictures of soon!)
I’m not saying that I believe I’m going to die soon. The prognosis is variable. In fact, I’m aiming for the age of 92 – at least that’s my goal for now. Yet, many people DO die from this disease and I need to be prepared for that. Maybe I’m deceiving myself, but I just don’t think my life will be cut short. Plus, research on NMO has EXPLODED in the last few years thanks to the Guthy-Jackson foundation and many dedicated researchers and physicians. I am optimistic of my fate and confident I will live a long life. Still, being married to a realist physician, I need to get that paperwork done and out of the way and dang, it is hard to even think about.
So I need to be prepared and I’m filling out end of life paperwork. I’m planning my funeral (it’s all still in my head – I need to write that down), I’m doing a power of attorney for my health decisions. This is all so new to me and I’m sure I’m not getting the terms down right.
There’s a cemetary down the road from me and believe it or not, it brings me peace knowing that’s where I’ll be. My kids can walk down to see me, though I’ll be in heaven partying it up with Jesus.
So, all of that being said, I’m a little weepy. I’m doing my best to keep it from my family, but apparently I’m crying in my sleep now. My husband is worried about me, but I think I’m handling it okay – except the days after I take my prednisone.
Because I’m on every other day, every other day I am emotional. Every other day I am hyper! Of course, these aren’t on the same day, so I’ll have an emotional day, then a hyper day, etc. I’m getting used to it, but I’m sure it’s driving my husband batty.
I’m also taking things VERY personally and have been told a couple of times to lighten up. Of course, I’m taking THAT personally too. LOL! I’m concerned that in the next six months or so, I’m going to alienate all of my family and friends and I don’t know how to make that NOT happen. I feel that the prednisone is making me irrational – not in a mean or crabby way, but in a “nobody loves me, everybody hates me” worm eating way.
Nobody wants to be around someone like that. NOBODY. And I don’t want to put anyone through that either. I’m normally one of those happy-go-lucky people that just take everything with a grain of salt and right now, those grains are meteors!
So, if you happen to come across this blog, please tell me how you coped with prednisone. I love my family and I don’t want to put them through any more of this! 🙂 They deserve so much better, and honestly, so do I. I don’t like crying all of the time and just saying, “stop it” isn’t working.