Another 2 Weeks Have Past . . .

Thanksgiving came and went without any real troubles for Lori. We had everything covered from shopping & setup to cooking and cleanup. Lori was able to just sit back and enjoy. She did go and take a nap on Thanksgiving Day (right after dinner). I don’t even know if anyone really noticed she was gone. The whole day was great. Thanks to everyone who helped out and especially to Tim and Nancie.

Friday we were up and out the door at 9:00. We went to sit with my Mom & Dad at their hotel before they headed home. Then we were to meet Tim & Nancie at Best Buy. (Yes, we went to Best Buy the day after Thanksgiving). We grabbed a handicap spot by the door, got Lori’s chair, and headed in to the abyss with the masses.

It’s amazing how people do not care if you’re in a wheelchair. We don’t look for any special attention but ‘people’ in general won’t even move out of your way if you are trying to get passed. Some seemed to move into our way. Fortunately Best Buy had hidden all of their shopping carts and instead passed out nylon shopping bags as you came in the door. It would have been a nightmare if everyone there had a cart! They did have a lot of isles blocked off at one end (to keep the traffic flow regulated I guess). It made for a lot of crowed u-turns in the wheel chair. After an hour or so (and a sack full of ‘specially priced’ DVDs) we headed to the car.

Tim and Nancie were far from done for the day. In the parking lot Nancie said, "Is there a Pottery Barn near by?" [queue ‘dramatic pause’ music] Time freezes . . . people stop dead in their tracks, heads turned our way . . . Lori and I look at each other . . . then at Nancie . . . and then back at each other. Pottery barn is by . . . *gulp* . . .  “The Mall”! [cut to scenes of people running screaming] Even a handicap-parking permit won’t help you there on Black Friday. “Y-Y-You want to go to Pottery Barn?” Lori asks. Nancie says “Uh-Huh”. So, we pack up, and with a series of deep breaths we head for the mall.

AHHHH yes. The mall. Thousands of people eating Cinnabon rolls and looking for that 'special something' for people, most of whom they don't really even like. It was pretty crazy. After an hour or so of navigating the great unwashed Lori was really beginning to wilt. Not sure if she was getting really tired, or just tired of looking at people’s butts and crotches. When we reached the halfway point in the mall we told Tim and Nancie it was naptime and we would meet them back at our house later that day.

Lori crashed right away when we got home. She woke up a couple hours later, had a plate full of leftovers, and we headed off to the Christmas Store. (FYI the Christmas Store is one of those places where Lori can feed off of the energy in the store for strength.) After spending almost 2 hours there we came back and watched a Christmas movie. I think it was around midnight before she finally went to bed.

Saturday She slept till 9:00. Then, around 11:00 she went to take a nap. With the exception of a couple of potty breaks she ‘napped’ until 8:00 that night. Then it was bed at 11:30.

The days since then were pretty good. Sunday, more napping. Monday and Tuesday I was gone, she slept. Today is a pretty good day as well. She just woke up from her two-hour afternoon nap. She did go to the store this morning for a bit.

It is really good to see Lori has ‘learned’ how to do things without getting too sick. She has learned her limitations (which are really big actually) and does not try to do any more than what she knows she can do. We know just doing anything will wipe her out. We have decided that, if she is going to get wiped out and have to take 9-hour naps, it might as well be from doing something fun.

The next couple of weeks should go pretty quick. I have a ton of work to do. Hopefully Lori will be ‘self sustaining’ and even able to cook a couple of meals in there.

On Dec 13 we go see the new nephrologist.

Then after that . . . Christmas!

WOW! It's Been 2 Weeks Since My Last Post!

I swear… this is going to drive us both crazy. I just read the last post, a mere two weeks ago. I spoke of hope and how good it was to see Lori having some “periods of energy again”. Please notice I said how good it was…

For 10 Days now Lori has had absolutely zero energy. Since Thursday the 3rd it has taken everything Lori has to do the little things again (like getting dressed). We planned on starting our Christmas decorations the weekend of the 5th. Our goal was to have them completed by Thanksgiving.

On Thursday when Lori wasn’t doing well I happened to see Jason on-line. I asked him if he and Ricky would help that weekend. They said they would be happy to come over and help (like they did last year). Lori sat and directed traffic from the couch. We managed to get a lot done that day, but not everything. No big deal. We figured Lori would get some of her energy back in a day or to and she would be ahead of the game with what we had already completed.

A day or two came, and went. Then another, and another, and another, and another. In the mean time I was back to doing everything. Making breakfast, lunch & dinner; cleaning up afterward, laundry, shopping, etc, etc. Stockings on, or no stockings, it didn’t matter. Lori couldn’t do much at all.

Her pain level had increased as well. We moved the blow up bed back downstairs and set her up on the Living Room again. Once more I called on the Boys to help finish up the decorating. They all three helped on Friday (the 11th). We cleaned the house from top to bottom and did a bit more decorating.

In the 10 days since we started decorating Lori was able to put pictures (as ornaments) on our big tree (4hrs), decorate the little Christmas tree in her room (2hrs), Finish what one of the boys had done in the bathroom (1hr) and decorate her Looney Tunes tree for the kitchen counter (2hrs). That’s about 9 hours worth in 11 days.

A couple of weeks ago we went to JoAnns to get some Holiday material so Lori could make dresses for her Chattys. This too turned out to be more than Lori was able to do. She was forced to abandon the idea of making her own dresses this year and just use the dresses she bought in the past couple of years. The girls still look beautiful in their pretty dresses but I know Lori wanted to make her own.

It looks like all of this can be attributed to the POTS. It really is a nasty disease that, in many respects, is much worse than Lupus. It is just so relentlessly debilitating. This flare has been constant for almost 2 weeks without letting up at all. I said it before and I know I’ll say it again POTS SUX!

Through all this I’m happy to say Lori’s attitude is as good as can be expected. She would love to do more in the way of decorating but realizes her limitations and is OK with letting us do everything. Many times since we started we have had to revise our goals downward and do less and less. Whatever we have completed this weekend will be it. No more messing around with it after that. Once Thanksgiving has passed it will be time to enjoy what we have done until we take it down.

Speaking of Thanksgiving, we’re having it at our house this year again. Lori knows she is not allowed to do anything. Tim & Nancie are coming in on Wednesday and said they will do all of the shopping. On Thursday they are going to come over early and do the cooking. The boys and I will clean and set up the house, serve and clean up the mess afterwards. The plan is pretty informal this year. We will be using real plates (you have to for this kind of a dinner) but plan on paper cups and plastic utensils (hooray – no silverware to wash).

It is going to be a pretty big gathering. My Mom will be unable to walk (she had surgery a few weeks ago on her ankle and cannot put any weight on her foot at all) so she and Lori can sit and keep each other company. Besides Tim, Nancie, Timmy, & Ashley, and my Mom & Dad we will have Jim, Lora, and their gang. Also, Brandon (Nancie’s son) and his wife and baby will be joining us. My other brother Tom will be having surgery on his foot Thanksgiving eve, so he and his wife will not be there. Lori’s Mom and Dad decided to stay home this year, so they will not be there either. We’re still not sure about Lori’s brother Reed. We’ll have a place set if we don’t hear from him before then just in case. The rest of Lori’s family usually spend Thanksgiving elsewhere.

As you can see it is going to be a gang! Lori is really looking forward to it. She loves to ‘entertain’ so much. It always has been one of her favorite things to do. I just feel bad that she has to do it all from the couch.

Hopefully the next week will be uneventful and I can post something about the great time we had at Thanksgiving next.

Quick Update!

It is really good to see Lori have some periods of energy again. If you keep up with this blog you have read that not to long ago I was very concerned about her state of mind. She had almost lost her positive attitude. Now, simply being able to do some of the small things that the rest of us take for granted, has really given Lori a boost mentally.

She was all excited about being able to pass out the candy tonight. Here is my post from last Halloween:

It's about 9:30 pm. Lori's migraine seems to have dissipated. She missed the few kids we had Trick-or-Treating. Bought her a tweety Halloween shirt to wear when she passed out the candy too. Oh well . . maybe next year.  

Well this year she did wear that Tweety shirt and passed out the candy herself. In fact she set up a little table (with a schpookie tablecloth of course), set up a chair and had a candle hanging from a hook behind her as she sat outside waiting for all the kids to come.

It’s really amazing what a simple thing like hope can do for you.