Friday, March 7, 2014

2014 STINKS!

Wow, after that one post, the crap really hit the fan in our family. My son has been in the hospital FIVE times this year. And it's barely March. WHAT? He started coughing up blood that first weekend in January, so they admitted him for a couple days to watch him, but it stopped. Toward the end of the month, it happened again, so another admission after 5 hours in the ER. Sent us home that Thursday late afternoon after 24 hours of no blood, but 2 hours after we got home, it started again, so back to the ER and they admitted us again. Over the weekend it increased a little at a time and then went crazy on Monday morning, so they took him to ICU, intubated him and did a procedure in interventional radiology. They seemed to think that did the trick and that Friday, we headed home again.

Had a follow up visit with his doctor the next Wed. and he was SICK, coughing quite a bit and we had to do another hospital stay while they added some IV meds and changed one of the other meds. That was Thursday to Monday in the hospital. With the new meds, they wanted twice weekly blood tests, so we had a home health nurse come by the house to draw blood. I also got sick, so we thought it might be a virus we picked up at the hospital. I finally had to go to my doctor last week to get some antibiotics, too.

This week on Wednesday was another follow up. Still not doing well. At 3:30 that morning, he sent me a one word text: "Blood" so I ran into his room and it was quite a bit again, but slowed on its own. Since the previous times it happened, when we went to ER, we didn't get a room for HOURS, so we decided to get some sleep at home and just go to his regular appointments. When I woke up, I called the nurse and gave her a heads up. She said we should probably expect the doctor to want to admit him again and I told her we figured as much and I'd already started packing a bag. So here we are again. He's super grumpy and not happy to have to come back. We didn't have the best luck with food service and the pharmacy getting his meds right last time, so he was hoping to just change meds and stay at home, but knew it wasn't going to be possible once the blood came up again. Ugh! Today they are looking at his liver, some of the tests came back elevated and it is common in Cystic Fibrosis to develop liver issues as well.

And in the midst of all of this, my dad has been diagnosed with liver cancer. Last week he had some delirium and ended up in the hospital, then moved to a rehab center over the weekend. His cognitive function is better, but the liver biopsy was not good news, he may be spending the rest of his days at that center. They have a hospice section as well.

AND one of my sisters is going through some testing that may involve cancer testing as well. So yeah, 2014 is not my favorite year. Is it over yet???? Whew! I'm tired. My theme song for 2014 is "Worn" by Tenth Avenue North.

Friday, January 3, 2014

5 months is a long enough break!

Oops, there I go again, hiatus in the blogging. Not even going to talk about my weight. My blood pressure and heart rate seem to be a little more stable. Had some bad bouts of depression, but there's improvement there, too, so the scale numbers have taken a back seat. Going to get a little bit of exercise in as often as I can. I've been reading - a LOT! Enjoying game nights with my family, beating my husband at Scrabble, traveling to visit my adorable great-nieces, hubby and I spent a relaxing week in Galveston on the beach in September, and in October all four of us cosplayed Portal 2 characters for the Alamo City Comic Con. It was a lot of fun and I decided to design a Christmas card using a photo from that day.

So, HAPPY NEW YEAR! I plan to make 2014 as healthy as I can in as much as I can control. How's that for a resolution? ;-)

Friday, August 9, 2013

Summer hibernation

Well, as per usual, in the midst of summer I just kind of try to hide at home and avoid the heat. It's been brutal lately with several days of triple digits. One day I felt pretty good, so we went to visit with friends at their new home and sat outside for a few hours that evening. It was pleasant enough, but I paid for it dearly for the next two days with sinus and head pressure. So I'm just kind of laying low and waiting for fall. Haven't had the healthiest eating habits lately and definitely got out of the habit of any kind of exercise. :-P

The first part of July my daughter ended up in the hospital for 3 days with a ruptured ovarian cyst. Major pain and internal bleeding. So I was in mamabear-nurse mode.

She hadn't been home two weeks when my son ended up in the hospital for a week. He'd started a job and was working way too many hours, and when he asked for a reduction in his hours, the employer refused (even though he'd been hired through a program for the disabled!) He finally had to quit and go into the hospital to try to get healthy again. Argh. We're going to consult with a lawyer who has CF and is head of the CF Foundation in Houston.

So it's been a little crazy. Hopefully things will slow down a bit now.

Saturday, June 22, 2013

Moderation begun

Wow, what a bunch of annoying comments by Anonymous. My blog is "rife with spelling errors" and if I clean it up you'll be sure to return? Really???? Please, don't bother. So I've changed my settings to get rid of the random anonymous commenters pushing their agenda or crap websites. Get a life, jerks.

Sigh. MIA - and up another 7lbs

It's been a frustrating time as I've struggled with the heat. Ugh. I really hate summer in south Texas. Have been a little out of control with eating. I think it's partly hormonal and this perimenopause nonsense. Weight is up and I've slacked off on the cardio. My waterproof heart rate monitor is on the fritz. Every time it does pick up my heart rate, it says it's over 200. And it's not. So I'm back to wearing my old uncomfortable one that is not waterproof, so I can't use it in the pool. Finally got into that when family visited. Need to get out every day to get that kind of workout in. Definitely felt it in the muscles, especially when I was lifting and playing with my 25+lb great-niece. Now THAT is a fun upper body workout! :-)

Had another gall bladder attack after walking around Sea World on Wednesday. I know it's because I've been eating some junk I shouldn't have. So I'm going to focus more on that and just getting out and MOVING! Or just dragging out the mini-trampoline when I'm watching TV. Had a fun time with my dad, sister and niece here for a visit. We went to the zoo while they were here, too.
My niece, Lydia and I got matching shirts at the zoo and wore them to Sea World. And we got soaked by the dolphins! She later got soaked by Shamu as she was selected to participate in the show. Such a fun day!

Thursday, April 18, 2013

App't with cardiologist

I was dreading the cardio appt, but it went VERY well. Since the thyroid tests proved it's not my thyroid and the thyrostim is not drastically affecting those numbers, (I TOLD ya, doc!) we're back to looking at the heart. He's suggested 2 fish oil caps twice a day and a workout routine designed to strengthen the heart and get me down to a lower resting heart rate. The workout is 5min cardio followed by 10min cool down (not resting, just lower impact). Next week 10min cardio, 10min cool down and building up the cardio each week.

He said it can take 3-6 months to work, so he wants to see me again in 6 months. I can do the workout more than once a day, as much as I can tolerate. He said he had good results doing this with another patient who was actually passing out a lot - which I have not done. I'm just happy he didn't try to push meds on me. He did say that the one test was a possible indicator of heart disease so he also asked if I wanted to do a CT to check for calcification in the arteries and I'm willing to do that as well. Scheduled for Apr 30.

Friday, April 12, 2013

Hot baths - BAD!

I love my baths too much to give them up. They definitely don't like me, though. BP of 97/49, pulse of 173 when I got out of the bath a little bit ago. Sigh. Drinking water to try to cool off.