Another Summer is Gone!

Ricky and Jason went back to their apartment today. They start their 3^rd year on college on Monday. (Mike already started last Monday). It is always an emotional time around here when “the boys” leave. They are really good to their momma and really REALLY do a lot to keep her in good spirits while they are here.

While many 19 & 20 year olds would be spending their nights away from home and out with their friends we are blessed with 3 who will stay home and “hang out” with their mom and play a game or watch a movie. This summer we replaced most of our old board games with new ones. It was a real joy for Lori to break in all those new games with her boys. I better stop now though, if she’s reading this she’s cryin’ pretty hard about now (sorry Lori).

The summer went OK as far as Lori’s health goes. Some ups and some downs. We have learned just what to expect from whatever activity she does and are getting pretty good at planning ahead for it.

She had a stomach flu that threw us for a loop a while back. The flu itself went away in a week or so but (according to Dr. P) due to Lori’s immune system being weak there were some lasting side effects. I wrote in the last post about this. The nausea continued for about 6 weeks before her stomach finally healed itself. I guess the next time she gets a flu like that we will need to get her on the Prilosec (or similar) right away before her stomach gets too damaged.

Of course it was hot here. Lori hardly did anything outside the house. The cars get so hot and even getting from the parking lot to the store has its effect on her, so, if I couldn’t drop her at the door and meet her with the chair, we didn’t go. I guess we have another 6 weeks or so before we start to see any change. It will be welcomed when it finally does arrive.

Speaking of the weather changing, Lori is currently deciding what her girls are going to do for Christmas. Her Chatty Cathy hobby has taken a life of its own. As of this writing she has 27 girls! Many came as beat up old worn out dolls that Lori has cleaned up and re-furbished a bit. It’s amazing what she turns them into. Her room is like a little girls’ dream. Of course with 27 dolls that means 27 Holiday outfits. (That’s why she’s figuring it out now). Last year she made a couple of outfits herself. They really came out great but it was very hard on her hands and took a lot out of her. She has found a few really good seamstresses that sell Chatty clothes on eBay for a pretty reasonable price. She has contacted a couple of them to see if they can help with our wardrobe crisis.

Lori really loves and gets great pleasure out of her girls. I know with the boys gone it will help her pass the time. She is getting ready to redo the website we have for them I think the one we have only shows 10 of them. It’s a bit behind. Hopefully that’s keep her busy and away from eBay…or we’ll be at 37 by Christmas (LOL).

Well we have a bit of good news, great news actually; Lori’s latest proteinuria was only 495! (That’s the Protein count in the urine). WooHoo! Ideally the reading should be zero. Up to 150 is acceptable. When Lori was diagnosed with the Nephritis it was around 5,000. At its worse in February 2005 it was at 12,000. It appears as though the nephritis is truly in remission. Hooray! All of the pills and Chemo did the trick. They did have their downside though…

Of course around here the good news usually comes with some bad news. As I said the chemo and medications have had their effect on Lori. She now has Osteoporosis. Two years ago she was told she has the early signs of it and went on a preventative medicine. She also increased her calcium intake. While those two things may have helped slow the progression it did progress.

There are many factors that could have added to the onset of this new disease. Many of the medications Lori is on to treat her Lupus will have long term effects on her bones. The incredibly high doses of Prednisone (a corticosteroid) she was on for months due to her Kidney disease we know eats bone tissue away. Also her sedentary lifestyle doesn’t give her bones a chance to rebuild and get strong. Right now she can’t have any more calcium. Her blood levels are already at the high end. Anymore and she could suffer from Hypercalcemia, which could damage the Kidneys as well as keep other minerals from being properly absorbed into her blood.

We just got the test results this week and haven’t been to the Rheumatologist to discuss them yet. The areas tested were Lori’s spine and left hip. All of the areas tested were positive for Osteopenia with some of that being Osteoporosis. From what we read Osteoporosis is pretty common in the wrists as well. With all of the pain Lori has in her wrists we are going to have those checked out soon. Just so we know.

I mentioned we haven’t reviewed the results yet with the Rheumatologist. We go see him in 2 weeks. This is a new Doctor. I forget his name at the moment (sorry). We had our 1^st visit with him about 2 weeks ago and really liked him. He reminded us of Dr Tumlin. He really seemed to be up on the latest advancements on Lupus and some of Loris other conditions. He also listened to Lori and seemed to “get” what she was telling him. Those of you who go to a lot of Doctors know that getting them to actually listen to what you are saying can be tricky sometimes. The Doc also acknowledged me (another difficult thing sometimes) and appreciated our record keeping. He reviewed the copy of both Kidney Biopsy’s we had. While this seems unusual for a Rheumy since this is the Nephrologists job, he knew what he was talking about and even discussed some possible treatment options we will have based on the latest protein count (which he hasn’t seen yet either).

He feels very confident that he can treat all of Lori’s lupus related issues. He even prescribed a new medication that may help with Lori’s POTS. If it does not help, he said he does have some other options we can try to get Lori some relief. This was a very good thing as the POTS is probably the biggest reason Lori is so disabled!

We both felt very comfortable with him and once again there is a chance of some hope. Not that we’ll get too excited just yet, but we’ll take what we can get when we get it.