Hi HI! another update, but not near as boring this time! First off, w3e went to the fair Saturday. We had lots of fun there. we were going to go to the rodeo, but by the time we got there, they were sold out. no worries though, we still had a great time. We saw quite a few people we knew, including Ruth and Anika. I guess Nathan and Todd were in search of a funnel cake to satisfy Ruth's fix. We then saw my old doctor, the one who oversaw my chemo while I was doing it. They were in search of ice cream, but their search was unsuccessful (they found it, but didn't want to wait in the long line). i also saw one of my BFFs, Katrina. Naturally she would be there, since she always enters her animals in the exhibits. It was quite exciting, though, cuz her pig was in labor! I got my face painted, which most of you saw at church! I forgot about it completely until someone came up to me with a comment! It was a bittersweet service though, cuz although I was finally back, it was farewell to Andy and Laura =...( They will be missed, but never forgotten.
That was Saturday and Sunday. Monday was nice, we had a birthday dinner in honor of my parents at our neighbor's house, which was delicious. We had cheesecake for dessert, with blueberries from our property. Then today, what a fiasco! at 10:30 we had to be in Anchorage at Prov for the Mother of all Blood Draws. 12 tubes! That was roughly 57 CCs! Then we went to Costco to pass the time, cuz we had another appt. w/ the gut doc at 3:30. That went well, and I am thrilled to note i am on a less strict diet. I can't go out and start eating nuts and popcorn and broccoli again, but it won't be near as straight. Thank heaven, I was beginning to wonder if i I would ever eat veggies again! Well, won't be posting much, we are going to Denali for Mom and Dad's anniversary. will post all about it when we get back on Friday. Well, I'd better go to bed, we have a big day starting early. Nighty-night!!
A wonderful young lady with Systemic Juvenile Rheumatiod Arthritis and Macrophage Activation Syndrome. I seem to defy the laws of modern medical science. We are home, and the wacky regimen of meds is working........for now. I know that God intended this life, and has a plan for me, be it dying tomorrow or living to be 100. I like to think that even though my life is tough, everything I've been through (and will go through) will help someone to not have to go through their life quite as hard.
Tuesday, August 28, 2007
Friday, August 24, 2007
can't talk for long, got a lot to do, but hello! I am out of the hospital.......again. So far so good, and we hope it'll stay that way. Not much else going on, it seems pretty boring again, not that that's a problem. We think we'll go to the fair for the rodeo. We were going to go today for the demolition derby, but we got up too late. Oh well, rodeo is better anyway! Well, I'd better get out and enjoy the sun while it lasts, and we have to leave for the dumps anyway. Gotta go help tear apart our bathroom so we can throw it away now!!
Wednesday, August 22, 2007
Well, not only is everything going considerably better, but it looks like I will be discharged.................TOMORROW!!! Yes, I am only on a low fiber diet right now, (not that it's easy top avoid fiber these days, what with everyone promoting it and putting it in their food) but WHO CARES??!!?! I can go home again!! This time hopefully I can stay out for a while. I shoiuld be getting my next IVIG in a couple of weeks, so hopefully that will give me the boost I could use. But yes, I have been on this diet for a few days, and so far no pain or nausea, so we're golden!! They were able to wean me off of the TPN and lipids, and switched me back to a lot of my oral medications. Home free tomorrow! Just keep up the prayers that we can stay out. All the labwork is going great, though. We have a follow up appt. with the GI doc next week. Wish us luck!!
Monday, August 20, 2007
Life is still in Suck Mode right now. No, I can't eat yet. Well, I can have full liquids, but how much more different is that from cledar liquids??? I got another CAT scan today, so we'll see if they even let me have some chicken noodle soup. I am so sick of broth and Jello. I've got to go, they won't stop coming in here. Next time they come in and it isn't for meds or good news about food, off with their head!! Don't mess with me, I mean it. The only food they send is cream of chicken, cream of celery, pureed potato, mashed potatoes and gravy, Jello, and pudding. Whoopdi-friggin-do.
P.S. Mom's b-day was Sunday, although we didn't have anything but nasty mashed potatoes and gravy. All I wanted was some real food, but I can't even get that right now. And here I am complaining when I should be thankful I don't have to be completely NPO. BUT IT'S NOT FAIR!!!
P.S. Mom's b-day was Sunday, although we didn't have anything but nasty mashed potatoes and gravy. All I wanted was some real food, but I can't even get that right now. And here I am complaining when I should be thankful I don't have to be completely NPO. BUT IT'S NOT FAIR!!!
Friday, August 17, 2007
I hate the world when I jynx myself!!! Not only can I NOT eat anything at all, but I have the stupid PICC line anyway!!! Why bother anymore? I can't seem to hold onto anything good anyway, so why should I set myself for trauma by getting my hopes up when they're just likely to come crashng down around my butt!!! well, I'd better go, they just brought me a WHOLE TRAY full of sodium free broth!!! Sorry about my current on fire-ness, but S-C-R-E-W T-H-E-M!!!!! At least they have a pick and choose of what they can have!!! (They say you can't get physically sick from hunger, but tell that to someone to whom it hasn't happened!!) Gotta go, my broth is getting cold................
Thursday, August 16, 2007
Sorry, I didn't finish the other day. They say I can eat tomorrow, not much though. hopefully I can convice them for some taters! I mean, if I can do Jello, what CAN'T I do?? Lol, nah, but still. I am getting sick of broth and sugar free Jello. I wish I could have some clam chowder tomorrow, it's my favorite!!! I'm gonna try and convince 'em, wish me luck!!!
And we know it's not C-DIFF, so we're cool. It could be caused by anything, with my immunosuppression. It can't become that, since I'm on the treatment for it.Thank God, I don't think I could have gone through that again! I'll give another progress report soon, I promise!
And we know it's not C-DIFF, so we're cool. It could be caused by anything, with my immunosuppression. It can't become that, since I'm on the treatment for it.Thank God, I don't think I could have gone through that again! I'll give another progress report soon, I promise!
Tuesday, August 14, 2007
Hi, everyone..........good news and bad (more bad, unfortunately). We went camping in Homer last weekend. Our friend, Pat, took us out on his boat. I caught a couple halibut, which is all I wanted, really. Then Dad's b-day was on Sunday. That was fun. Then we had a court hearing on Monday for my sister's gaurdianship. That's when it turned ugly. I am now in Porvidence, awaiting answers. I'll let everyone know
Monday, August 6, 2007
Howdy everyone! We're home, safe and sound. It's such a beautiful day today, so I won't take up your time and mine with a long droning post today. I'll save that for when it's rainy. But basically, not much else has happened since we got home, I have to get bloodwork today, but that's about it. Thank you so much for the continued prayers, they mean the world!
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