Monday, December 18, 2006

Remicade fiasco...

Time goes so fast.. and I have so little of it nowadays. I am so tired of being sick ALL the freakng time! Remicade did nothing... After many turns (and two new blood clots, dman it) I am now back on square one. I am trying chemo theraphy again, in the form of Methotrexate. It has worked before, so who knows. The only drawback is that it takes several months before it kicks in... So I am still taking a form of steroids. I keep loosing weight even though I eat a lot. I pretty much ate a bact of Swedish knäck and one of Swedish kola all by myself. Still managaed to loose more weight. Now down to 125 lbs. That is so weird! I always complain to myself that I want to loose weight, but then when I do (without having any control over it) it is kind of scary...

We will be celebrating Christmas two days. K brother can only make it on the 24th, so we will have a big ham dinner then. On the 25th we will go out for dinner.

Tuesday, May 23, 2006

Remicade approved!

After a lot of turns with the insurance company I finally got approved for Remicade treatments. This is my last resort, since I have pretty much tried everything else over the last 20 years. Nothing seems to really work anymore. Remicade is the latest hi tech medication out there for Chron's. It is actually derived from mice. It blocks the body's inflammation process, essentially shutting down the inflammation all over.

Many people have had a pretty immediate dramatic improvement, but I was apparently not one of them. It could take a few months to really work as well.

It is a very expensive treatment, the meds themselves costing about $2000 per treatment, plus the cost of having the 2-3 hour long infusion in the hospital.

I am going in for my second treatment on Tuesday next week, the initial treatment is at 0 week, then another at 2 and then again at 6. After that most people go in every 8 weeks or so.

Of course this medication comes with its share of serious risks, but at the moment I think the benefits outweighs the risks... Ask me later!

We are planning a little camping trip this upcoming Memorial Day weekend. I have rented a cabin in Myakka River State Park, adn we are going canoeing and hiking in the park. They have a canopy walk there that is pretty unique. Last summer when we camped we used a tent, but it is really hot and muggy here in Florida already, so I am glad we get to stay in a log cabin with AC and shower bathroom/shower facilities. These cabins were built back in the 30s but have been fully modernized.

Should be fun!

Today I am catching up on some work and just doing stuff on the computer. Nothing much going on I guess.

Thursday, April 27, 2006

Out of the cave!

I feel like I have been in a cave the last three months, with being sick and K been working so much. Finally that seems to be over! Tomorrow we are attending a black tie event benefiting an organization helping developmentally challenged kids through riding theraphy. On Saturday we are spending the day with my friend S from New York, we are going to have lunch on the beach and then go for a cruise on Sarasota Bay. We should be home at 4:30 PM. At 6 PM we are going to attend a BBQ party on Manatee Ave, where there will be whole grilled pig and we will view the heritage parade that passes by just next to us. So we should have a full weekend!

Next Saturday we are going to have a little get together for S who is turning three. We will meet down at the beach on the north tip of Anna Maria Island. The beach there is lovely, and there is a great playground for the kids and picnic tables with grills so we can have a cockout. Should be a fun day!

See you later!

Thursday, April 20, 2006

Where are they?

They said they would be here "just after 9:30 AM". Hmmm.... I won't be able to get anything done today if I have to sit around waiting for that stupid tree service. We are going to be gone for two days, and my MIL is staying over to take care of the dogs while we are gone. So I need to clean a bit to make myself feel better. It isn't horrible, but it needs cleaning. Grrr.......

Thank God it is over!

We just got over tax season. S and I have pretty much not seen K for the last three months. He has really stepped up his business this year, but that also meant working tax season 7 days a week LOOOONG hours.

To top it off I have been sick so much the last few months. I started a new med that totally fucked me up. It was a chemo med that supposedly wasn't that different from all the other chemo meds I have taken, but just a few hours after the first dose I got major diarrhea. The doc wanted me to stay on it, since I just really don't have any other treatment options at this time. I did, but it just completely drained me. I was upp all night going to the bathroom, never getting any solid sleep. After a month I just couldn't handle it any more, it made me too sick. The bad part is it stays in your system for at least a month after you stop taking it, so no immediate relief.

Then I got strep throat. No big deal... Then S came home with the rota virus. Normally that is a nasty stomach bug that will be over in a few days. Oh boy! Since I was already so bad off I got complelty wiped out by this! Trying to take care of S and everything else on top, it was hard. Luckily my mother in law came to the rescue and helped out with S. Finally I was so dehydrated I ended up in the hospital. I had lost 11 lbs in two weeks!

Last week everything finally calmed down. All three of us had been sick, so we were now looking forward to a nice Easter, celebrating the end of tax season and being able to hang out as a family again.

On Easter Sunday S started to projectile vomit. It was baaad! She even hurled in the fancy restaurant we went to. Then a day later K started to hurl. They are both still battling the bug (once again a big THANKS to S's school! We really appreciate all the bugs you share with us :X!)

I seem to have escaped the brunt of this round, but today I have extreme diarreah. And we have a hotel reservation in Orlando tomorrow. We are planning on spending a great day at the Magic Kingdom. So I guess I will pack extra clothes just in case and hope for the best...

Speaking about outings... Now when K is working normal hours again we have decided to do a full day outing every weekend for the next few months. Just to hang out and have fun. On our list of things we are going to do we have:

Disney World (this weekend)
Clifford the Big Red Dog LIVE! in Clearwater, coupled with a nice lunch on the beach
A visit to a local horse ranch where we are going to go horseback riding
A day tour to the island Egmont Key (only accessible by boat)
A day at Universal Studios Island of Adventure
A day at the water park Adventure Island in Tampa
A day at Cypress Gardens in Winter Haven

and lots of lots of nice days on the beach. The water temperature in the Gulf of Mexico is already at 75 degrees, so it should be nice!

I am currently waiting for a tree service company to come and pull out a giant ficus tree with a back hoe. It is going to cost us $500, but that thing needs to come out. The roots on ficus trees are really evil, growing under the house and all over. People really don't think about the consequencesbefore they plant these things. They just think it is great with a fast growing privacy tree, but these guys are set to be 90 feet tall. Not a good thing... So hopefully they will be here soon so I can get my day going.

Thursday, January 19, 2006


It has been a busy morning. I have been out with the flu for a few days BAD, (my own fault for not getting a flu shot this year, a must when you are as sickly as I am ). Today I feel I got some energy back.

This morning it was really cold, and when S woke up her diaper was so wet her PJs was wet too. I changed her and then we both jumped into my bed to warm up a bit. Stan the dog was there too, and we had a lazy half hour just cuddling. After breakfast I took S to her school, where she goes every Tuesday and Thursday. I have since then been working, sending out invoices and other things.

We are having a birthday lunch for K, since he turns 40 on Tuesday. I made arrangements for us at 1 PM at the Beach House, a really nice place on Anna Maria Island, with an amazing view of the Gulf of Mexico. I also ordered an ice cream cake, which K doesn't know about. I will pick it up tomorrow and drop it off at the restaurant, so it will be a surprise for him. We should be about 9 adults and 3 kids. Should be fun!

I have a hair appointment right before the party, and I can't decide if I should get bangs or not... I am just a bit tired of the same old hair... We will see!

I better get online to book a hotel, we are going to K's grampa's birthday party next weekend, in West Palm Beach. He turns 97! It is just such a long drive, almost 4 hours one way, so I thought it would be better if we arrived the day before and stayed the night.

See ya!