Xander the Little Swimmer

We went to the pool last night with our friends from the apartment complex, and Xander said "Don't even bring my swim vest, I don't want to swim." I packed a coloring book and markers for him, and a bunch of snacks and off we went. (I brought the vest even though he saw it and said "I'm not going to change my mind.")

Once we got to the pool he immediatly wanted help with his vest because he wanted to jump in the pool. He was having so much fun and then out of nowhere, he asked me if he could take his vest off and swim without it.

He wanted to hold onto the pool noodle first, so I said OK. After a while he asked if he could take the pool noodle away and try to swim without anything. I said OK and watched him as he just tore off through the water, like he had been swimming forever!

The only thing he struggled with is with the vest on he could just float there and not kick or swim, so whenever he got tired he would just stop kicking and he would immediatly start to sink. He never went totally underwater, he would start kicking again, but he kept swimming from side to side, person to person.

He started demanding an audience, and wanted everyone to shout "Xander-Xander!" everytime he would start swimming again.

How awesome! I am so proud of him, and he was just oozing with confidence, such a change from our scared-of-water little guy.

ing about gastroparesis - hope it helps some others.

y was a rough day. I could not do anything at all. Today, my energy has been up a bit but I have been pretty nauseous. I made a you tube video today talk

I had a doctors appointment today, my leave has been extended another 3 months at least. My octreotide will probably be increased to 50 from 25. Yesterda

update

Well, I've gained a few pounds, and I am eating more and feeling hungry - but (there is always a but) I still feel pretty nauseous all the time and I still have this lingering feeling of having a mild case of the flu. Pretty tired all the time, and having such headaches.

I messed up my shot a few nights ago, and I think I hit a blood vessel. It was bleeding more than just from the poke (I have never bled before) and it hurt afterwards pretty bad. I still think they are working and helping me hold down the food better.

I am trying to do a little cardio to help sculpt the weight loss. I have done it for three days now, I've only lost 1 pound (not trying to lose weight this way) and I see some firming in my stomach. I thought it might help with my energy level too, but so far I'm just mostly wiped out afterwards.

Almost missed church today because I was feeling so sick this morning but I am going to make it. (This is the same thing that happens every Sunday.)

I go see my doctor Monday to give him an update and hopefully extend my leave another 3 months. I know I wouldn't make it right now at work. Not a chance.

Inspire Group

The Inspire Group has a ton of info, and it can be really helpful to share information with others about what you've been through, or read about what they've been through to help you prepare.

Here is a link to my profile if you want to take a look, and get started.

www.inspire.com/jessconk

Helpful Post

This link is full of helpful info, either if you didn't know much about GP, or you want to learn more:

www.digestivedistress.com/files/pdf/tips.pdf

Feeling like the flu...

For days and days I've felt like I have the flu.

I hate complaining, and don't want to whine. I am happy for all the wonderful things in my life, the fact that I can eat, and I am not losing weight anymore (at least now), and I'm actually gaining.

BUT - I am exhausted, feel sooo tired. Nauseous all day, my head even feels heavy. My stomach is sore and bloated, I feel just terrible.

So I am doing better, but still so bad.

I don't know why the octreotide injections are hurting so bad either. The first time I tried this, I feel like I was doing a better job. Now the injections hurt, and I have to even try to poke myself a few times. It's way worse on the right hand side, but since I am supposed to rotate the injection sites, I'm out of space on my left side.

Ugghhh, it is almost time to pick up my boy. I am glad I get to spend time with him, just wish the three hours he was in school was enough for me to recharge.

Found some frozen yogurt that I LOVE, pretty sure I would like to live off the stuff.

I am really tired, I do think that's from the med. Maybe I will become used to it after a while. Was really nauseous last night, but less than before. :-)

Day 3 on octreotide, and besides feeling a bit of pain here and there my appetite is up and I am able to eat more!

So far so good on day one of trying octreotide again. My head hurts and I am very tired. Going to take a little rest and see if that helps. :-)

Trying Octreotide again...

I am starting this blog about a year and a half late...but to quickly bring you up to speed - I have Gastroparesis. Last year from Jan-May I was diagnosed with the "flu" five times, and even ended up going to the ER when I had an episode of vomiting (and other fun things) more than 12 times in hours. It kept going, but honestly, I lost count after that.

I switched doctors, and visited specialists. Everyone ran the usual tests, my head, my heart, xrays and ultrasounds, blood tests and consultations - before running a gastric emptying study. Once I had a diagnosis of Gastroparesis, I was sent to see Dr. Toskes at Shands. He's fantatstic. My local GI, Dr. Feiner is awesome too. They both care, listen, and try to come up with solutions for me/with me.

I've tried a mix of different medications, none of which seemed to do much. Some made me worse, some made me have allergic reactions. Anti-nausea meds that make me more nausious (haha!) others that cover me in crazy bumps, and the one that actually worked makes me pass out. Whoops! The one medication I have documented proof that should work, Octreotide, didn't seem to make me better, in fact I felt a great deal worse. That could be coincidence though. I am going to give it another shot.

I tried it for 11 days, and stopped March 3rd because I was feeling pretty terrible - and was convinced it was because of the Octreotide.

My doctor suggested I give it another chance and try to deal with the symptoms a little longer than 11 days. Sometimes it gets worse before it gets better. The fact is during the small bowel monometry, Octreotide made my stomach move, which it was not doing prior to the injection, and after more than a year of not moving, I'm sure it does hurt when it starts up again. The good thing is, if it works, I get to eat a bit more. FINGERS CROSSED! (again)

My head hurts tonight and I feel absolutely exhausted.

I stopped taking the Bethenacol about a week ago. I was sure it was keeping me from getting sick so many times a day, every day. I am doing exactly the same as I was while on the Bethenacol, as I am doing not on it. So, I think now the reason I haven't been getting so sick all the time is because my diet is so very limited. I eat basically the same things every day - spoonful of peanut butter, an egg, some cheese, a few crackers, a slice of white bread, maybe some soup or "fake" (vegetarian) bacon, and lowfat frozen yogurt. I don't eat meat, or vegetables (with few exceptions - potatoes, acorn squash well cooked and sometimes portobello mushrooms) and I don't eat frut (except applesauce, pureed bananas and pureed peaches).

I've been out of work since March 8, and I'm certainly less stressed but not yet feeling much better. I have a few good hours here and there. I can handle about 3-4 hours of activity and then I'm pretty wiped out.

The Octreotide seemed to really make me very sleepy last time I tried it, so I can not imagine getting any more tired than I already am. Guess I will soon see. :-)