Wednesday, December 28, 2011

2011: The Year of Goodbyes

That's how this year has felt. One long goodbye to beloved pets, my partner, my house, the backyard, the birds and on and on. Actually the past 4 years have involved a multitude of goodbyes.

I don't think I can handle one more loss but one thing I've learned since getting ill is I have no control over it. I wish I could rewrite the past year. I would have done things differently had I know this would be the outcome.

I did not expect to spend both Christmas and New Year's Eve alone. It's no one's fault and I was invited to my sisters' best friend's house on Christmas day but I couldn't imagine being around people I don't know well. I have a hard time letting people see how deeply sad I am.

I spent Christmas Eve with my youngest sister, my brother-in-law, and his parents. Dinner was 5 star as it always is when my sister cooks. And it was fun hanging out with them. I was a bit preoccupied however, because of the bleeding.

Since the colonoscopy I'd had an increase in bleeding to every other day. It wasn't a small amount either. Christmas Eve I was pleased to drive myself to my sister's house but right before I left I started bleeding again. This was around 4:00. The bleeding continued slowly over the next few hours and started to get rather brisk about 4 hours later so I contacted my doctor's office to see what I should do. Clearly it was getting worse and I was worried. The on call doctor who'd probably had one too many glasses of wine giggled as he said "I hate to send you to the ER on Christmas Eve but you need to go". My sister drove me while I sat there and thought to myself "is all this shit ever going to end-?"

They got me right in and the doctor arrived within 15 minutes or so. Luckily he was able to locate the source of the bleeding. The scope has eroded part of my colon (a small part) by scraping it and it had left an open wound which needed treatment or it would continue to get worse.

My blood count was okay -they gave me a copy to show my doctor. HCT is at 15.8 with 15 being the lowest before getting flagged. The sodium and chloride were both low and my blood sugar was high again. The staff there were wonderful and kind. We were out within 2 hours.

But I can't eat solid foods for 1 week so I'm spending the rest of the year on a basically liquid diet along with yogurt and pudding. Knock on wood I haven't had another episode since the ER. Seems like a fitting end to the year.

I should contact my GI doctor but I'm not up for another MD appointment.

My other sister and her family gave me a Jack La Lane juicer which has certainly come in handy this week. I've been juicing everyday and have been enjoying trying out different combinations of fruits and veggies.

I started Prazosin two weeks ago Thursday night. It definitely helped curb waking up with that startled/racing feeling. I woke up feeling extra tired and coming down with something. A virus had been going around so I must have caught that. Friday night I had to sleep partly sitting up because the virus had moved to my chest and I was having a hard time breathing. I was up from 3-4 am. breathing in steam from a boiling pot of water.

Luckily it didn't get any worse. It had all the symptoms of a looming lung infection but that eased up thankfully.

What scared me though was Weds I woke up feeling woozy and faint. I'd taken a full dose of Prazosin the night before and this was one of the side effects listed. Against my better judgment I took Chelsea out for a tiny walk. I didn't make it far.

When I got back the muscles in the back of my legs were burning as if I'd just run a marathon even though I hadn't walked more than 1/4 a block. I got in bed and the muscle pain/ache/burning got really bad and then encompassed my entire body. I could not look at light because it hurt my eyes so bad. I couldn't watch TV nor get on the computer except to briefly send my ME doctor an email wondering if this was a side effect. Any movement increased the pain. I took 1/2 a vicoden hoping that would help but it didn't touch it. Any movement on my skin hurt also.

When I got up to take meds my legs were incredibly weak making the short trip to the kitchen a bit of a challenge. I wasn't able to take in much water because any movement caused pain.

It eased up by nighttime and the next day was gone. I did not take Prazosin that night. I still have no idea if this was a side effect or the result of a virus but I've never experienced overall body pain like that before nor the intense eye pain. I hope those sorts of symptoms aren't in my future.

I'm going to try Prazosin once more once this week is over and I can eat again. I would like to stay on it if possible. It was nice not to wake up with a racing sympathetic nervous system.

Also, it has helped to add in the extra adrenal support.

I don't know what 2012 holds for me. Usually when I've had a difficult year I'm hopeful the next year will be a good one but I've been saying that since I got sick. I don't know what I believe anymore. I'm just taking things one day at a time hoping I'll feel better soon or that at least some good things will happen.

Being able to afford a place to live where I can have Chelsea and my kitty would certainly help. I can't imagine being without them.


Sue Jackson said...

Ow, wow, Terri, you have had such a challenging year (again). So sorry you are ending the year in a rough spot, too, but it is good you got the medical attention you needed on Christmas Eve. Consider this week one last purge of all the bad stuff that happened this year - next week is a new year and a fresh start.

Thinking of you -


Ronnie said...

Yes, just want to back up what Sue has commented. This time of year can be tough anyway and when you are unwell can seem even worse.
Here's to a better year next year and healing/a cure for us all.

Best wishes,


Pris said...

I think of you so often and the tremendous challenges you have. One foot before the other is sometimes the only way to survive.

irene speaks said...

Hi Terry! I came across your blog from Treya's site. I'm so sorry that this stinking disease is doing so much damage to you. I tried to read a few of your posts but really, how can someone have so much awful stuff going on at once? That's a rhetorical question, of course, since I think we all know what ME/CFS/CFIDS can and does do!

I'm so concerned about all the bleeding and colonoscopies. That's a real bummer. (Oh, gotta introduce myself: I've had the DD for 37 years and no, it's no picnic.). My daughter had severe, sudden onset of Crohn's/ulcerative colitis (the top docs aren't even sure what it is completely - a vicious new hybrid of the two illnesses) so this past year and a half was a nightmare none of us could have imagined.

I know this sounds so self-serving, but if you want to talk about any of these problems you're having, you can reach me at my new blog
I can't express how sad and angry I get when I read that young people are going through all of this. I'm basically bedridden. But I had so hoped that by this time, MUCH better answers could have been available by now. I so hate seeing young people coming down with this illness(s), in so many cases, destroying lives.

Sending as many positive thoughts to you as possible. I hope I can help in some way, if only for you to know that you've one more person keeping good thoughts going your way!