Thursday, September 20, 2012


It seriously is taking me forever to write this post...the new blogger is now permanent and I had still been using the old. Now I HAVE to use this and figure out how to navigate... Anyways, what have I been up to?? I deaccessed my port last Friday after a little over a month of IV's. It feels so good to have a little more free time again. The IV's always take 3 hours a day total. My PFT's though have just been STUCK at 35-36% (FEV 1) pretty much all summer, even after a total of 2 weeks of IV's, being on oral antibiotics on vacation, then another month of home IV's. Frustrating. So they added the dreaded prednisone for several weeks and I've been on a pred high ever since. Nice to have some energy! I've been cooking, some canning and even getting ready for a garage sale. I go back next Thurs. for a check at clinic. I'm waiting to hear about doing a gamma globulin treatment and also a bronch is being scheduled to see what's going on with the lung bleeds and low grade fevers I've been having. Now on to the canning...

Making Concord grape juice concentrate... I've been having fun with this. I LOVE homemade canned grape juice! You use a steamer thing, add the washed grapes, sugar, steam it an hour, then into the jars, seal and that's it. No cold packing or anything, they seal because the juice is hot. So I have several jars of yummy, sweet goodness. My daughter-in-law made some too...the boys love it! You dump it in a pitcher and add 1/2 jar of water to reconstitute. Soooo much better than the store bought! I also tried making grape jelly, which I'd never done before. It didn't set, I had to redo it...I think it'll be OK now. Not sure I'll ever try that again though!

All done and sealed, ready to store!

This is the steamer. That little tube in front clamps shut and you put the juice into jars with it. I forgot to take a picture of Stephanie doing this part. That's the fun part!

And the very best part of the last week was being able to take a shower again. We remodelled a bathroom this summer, taking out an old leaking tub...turning the whole tub area into a tiled shower. The shower door was put on the VERY day I had to start IV's and you can't get your port wet while it's accessed, so I had to just look at this for a whole month. It drove me nuts!

We had the walls repainted, as well as the vanity. Top of vanity stayed the same.

The floor tile is the same as shower, but the floor of the shower is a broken rock effect. The lighting on all of it isn't great on these pictures, the tile is a little darker than it looks here. I love how it all turned out!

Happy showering to me!

Saturday, September 8, 2012

First days of school

Speaking of school...

Kayden was all ready and very excited for his first day of Kindergarten orientation! The only thing he wasn't really too happy about is that orientation was only lasting a couple of hours and his mommy and daddy had to go with him. He was ready to go by himself and stay all day! Little brother wasn't happy because he had to wait a few days for his Preschool to start. I kept him during the time they were gone and we played Preschool and drew and cut out large happy faces...made him fridge is covered with happy faces.

Just before they left for school.

The next week was finally Perrin's first day! I picked them up after school and took them to Burger King to get smoothies and then we came to my house awhile. Perrin loved his day!

We made signs...(the teacher in me) and I pointed out that Kayden starts like Kindergarten and Perrin starts like Preschool. I also asked them what they want to be when they grow up and wrote that underneath. Kayden wants to be a fire fighter and a paleontologist (hope I spelled it right!) and Perrin said race car driver and policeman. You can click on the pic to see it better. The littles are growing up...a little too fast!!

Friday, September 7, 2012


I had a clinic appointment yesterday. I have to go in weekly when I'm doing home IVs. My PFTs are STILL no higher and it's frustrating. I nearly fell out of the booth thing just doing them! My lungs were wheezing to beat the band according to my dr. So guess what...prednisone of course, starting tomorrow. Hello insomnia and high blood sugars, but maybe some energy and joint pain relief. Such a love/hate relationship I have with prednisone...a little more on the hating it side, though...too many side affects. But I do think I need it right now...I said no last week, this week I'll do it. 60 mg for three days, then tapering for a total of 21 days. And staying on IVs for one more week. At my clinic they take you off after 4 weeks. My dr. wants my immune system tested again to see if gamma globulin tratments might be an option to help me. After my clinic appointment, I went to the car to hook up my IV, which I'd brought along in a cooler. Hooked up to my portable and then tucked it in my purse and went to get a snack at the vending place. By the time I was back to the car, there was only 10 min left. Perfect timing, since I had an appointment with the immunologist in the same building (or so I thought). When I got there, there it said neurology...ok, I was sure it was the right place, but I hadn't been there in a year. A hospital worker saw me looking confused and asked me what I'm looking for. It ended up that they had moved to a different building, within walking distance. She showed me where and I huffed and puffed and finally made it, all out of breath and 10 min late. But it was all ok. Afterwards, I had orders to get a bunch of bloodwork done, so I walked way back over to the had just closed. So I had to walk to the OTHER lab at the OTHER end of the hospital. My poor lungs had about had it till I got there, but I made it. So it was quite a long day for me. I left at 12:45 and got home at 7:20. Now I just wait for the bloodwork from there and next Thurs I'll be back for another clinic visit.

Thursday, September 6, 2012


Still some brown patches, but it's so good to see the GREEN back again!!

Saturday, September 1, 2012

Summer health

I am finally moving on from my mini gardens post at the beginning of summer! Yep, I almost forget how to blog. This post is a quick catch up on my health status...Summer was a bit of a bummer for me health wise. I was on IVs a good part of it. Plus, I also had some other issues going on. Several new doctor appointments. One new issue was really bad joint pain, especially in my hands and knees, which turned out to be Rheumatoid arthritis. I was put on Plaquenil...there are lots of meds for RA out there, but I have to be careful because of my kidney problems. The Plaquenil is helping somewhat...taking the edge off. Then I was having a lot of back pain and an MRI showed a herniated disc pinching a nerve, which was causing my right foot to be tingly a lot of the time. I got 3 injections into my back, did PT and then also started pool therapy...the combination helped and my back started feeling much better! Plus, I really enjoyed the pool therapy! Then I had to go on IVs...well, you can't get an accessed port wet, so I had to stop the pool therapy. I got to stop IVs (and go on oral antibiotics) on vacation to Florida the end of July for two weeks, so I did the pool thing there. But as soon as we got home, I had to go right back on IVs and this is my third week on them. My PFTs have been in the mid 30s all summer. I know that's just a number, but I can really tell a difference overall...more shortness of breath, my chest has been aching, ive been having lowgrade fevers lately, as well as hemoptysis (coughing up blood). Yuck. My oral glucose test in June came back elevated, so I'm now watching sugars and carbs. And just keeping a watch on my sugars. I personally think the test came back high because i was on not convinced that im diabetic, since my sugar hasnt been high when i check. But I will watch that carefully. It was kind of a frustrating summer to have these new issues pop up. I kept thinking, just let me go back to JUST my lung just felt like things were getting out of control there for awhile. It is going better, exept for the misbehaving lungs. Not every day is bad...some days are pretty good. And so I just keep doing what I have to do and hope and pray that my lung function goes up...this is probably boring, but I'm writing it for me so I can look back and see what was happening when with health. This next week I have an appointment at clinic and also the immunologist...thank goodness they're both in the same building!

I DID manage to make some applesauce, can some tomatoes and red beets (with the help of Brenda) and spent some time with my littles. We picked lots of blueberries off our bushes and now I'm getting quite a few raspberries...the boys love to pick and eat. Kayden said they taste like heaven! I've got quite a few bags in the freezer for smoothies. Yum!