The last few weeks have been a bit rough. It's kind of ironic because I was going to do a post about my mantra, "This is gonna be the best day of my life," and how wonderful everything has been, and then...well, it hasn't exactly been the "best day of my life."
Remember how, when you were younger, and you could eat whatever the heck you wanted, as much as you wanted, and it had no affect on you whatsoever? Whether making you gain weight, lose weight, feel sick, it just really had no affect. My junior and senior years of high school, my favorite snack was chocolate milk and Funyuns. I could eat that and be totally fine, and not gain an ounce. Of course it helped that I was super active in athletics, but I very rarely got sick. I could eat loads of ice cream, seriously, bowl after bowl after bowl. It was awesome.
Of course when you quit being so active, when you try to do those same things, it has a different affect on you. For the first 7 years after Greg and I got married, we ate like crap. Junk food was just part of our diet, and even though I did gain weight, it never really made me sick. The past two years has been a bit different, and especially the last few months and couple of weeks. I have not been fully able to enjoy a meal in quite a while. I mean, look at this super delicious meal we had a couple of weeks ago. I actually was able to eat it all, but then felt the after-effects early the next morning.
It has been so incredibly frustrating the last few weeks. Everything has been making me feel sick to my stomach, and I have been throwing up more than usual. It has made me just want to stop eating all together because I'm so afraid of throwing up, or just being sick. This has caused more weight loss and lack of sleep, which results in me being completely exhausted and always wanting to sleep.
After the meal above made a reappearance, I couldn't go back to sleep, so I decided to stay home from work. I absolutely hate doing that, and I really had a tough time debating what to do.
The night before I had seen this quote, and I had thought about it quite a bit.
For the first 3 years I was at my job, I never once called in sick, even during the year the Scleroderma first started, I didn't call in sick until I fell and hit my head. I feel like I push through every single day. I have to. I don't have an option, but every now and then I do need a good rest, so in keeping this quote in mind, I texted my boss and let him know I wouldn't be in. It was really nice to just sleep in and then watch Psych for a few hours. Much needed.
Unfortunately, the sickness didn't stop there.I continued to feel sick, and threw up a few more times. Once I saw what my weight was getting down to, I asked Greg if he thought I should call the doctor, and he said probably. I never know which doctor to call, but since I felt it was more Scleroderma related I called my Rheumy first. In speaking with the nurse, she asked if I had called my primary care physician (PCP). I felt like she was a little annoyed with me, because she said something about it sounding like a stomach bug. I think I would know the difference, so I decided to call me PCP, even though my Rheumy ended up calling that night.
I schedule an appointment with my PCP for Friday the 6th, and when I went in, he too was concerned about the weight loss. He asked me questions, looked at my file, and told us that I had a Hiatal Hernia. Apparently it was found back in October when I had my Endoscopy. Not that it's super serious, but it would have been nice to know this, and know that that could be part of the problem with my digestive system.
My PCP called my Rheumy just to touch base, and see what the next step should be. It was an interesting conversation to say the least, but I don't want to talk about that. They wanted me to go see my GI and see what he thought we should do. In the meantime Dr. Carlson gave me Reglan to help speed up the digestive process, and also had me set up an appointment to do a Gastric Emptying Study.
I really like both of my doctors, but to be honest, I went away from that appointment feeling a bit uneasy and somewhat scared. Talk of a feeding tube can be a big scary, but I don't know what more I can do. I don't know how to keep the food down. I've tried talking with my angry stomach, but it just doesn't want to listen to me.
The Gastric Emptying Study was quite interesting. I had read bad stuff from people who had done one, but I realize that it was more people who couldn't eat solid foods. Luckily I don't have as big of an issue, so I got all worked up for nothing. Basically I fasted for a few hours before the study, then I went and they made me some radioactive eggs, and toast with jam. I ate all of it in about 15 minutes, and it wasn't awful! It actually tasted better than some of the other eggs and toast I've had.
After stuffing my face they had me stand in front of their little machine for 2 minutes so it could track the food in my stomach. We had to come back every hour for four hours after that so they could do a two minute picture thingy. It wasn't bad, but made for a long day.
The next day I had an appointment with a Mental Health Counselor. My doctor had kind of recommended it for my 'eating disorder', but figured it would be pretty helpful with everything else as well.
I have to admit, I was quite nervous. I don't like talking to people about myself. I just don't. Plus, it's easier to say, "I'm doing fine" than to dig in and talk about my problems. But I was actually kind of impressed with the doctor. We did talk about some goals for the two weeks until I see him again. I've done okay with those goals, but I've also felt better so it's easier to eat better.
I got the results from the gastric emptying study, but they just said my stomach doesn't empty normal. I went and saw my GI yesterday (June 18). I wasn't sure what to expect. He just kind of explained the Gastroparesis to me (which is quite common in Sclero patients), and ways to help my stomach not hurt as much. I basically am not supposed to eat fruits, vegetables, or fatty foods. I guess I can puree the fruits and veggies (and meats), but that just doesn't sound super delicious. I'm also supposed to eat less, more often.
He wants me to try domperidone instead of reglan, but before I can, I had to get an EKG. That was exciting. Love all these new adventures. We'll see what results I get from that and see if I can go on that other medicine.
I just want to feel better, and be able to eat whatever and not have to worry about the consequences, but unfortunately, I don't think that's going to happen. So here's what I want you to do. Go out and enjoy a nice juicy burger and fries for me!
Remember how, when you were younger, and you could eat whatever the heck you wanted, as much as you wanted, and it had no affect on you whatsoever? Whether making you gain weight, lose weight, feel sick, it just really had no affect. My junior and senior years of high school, my favorite snack was chocolate milk and Funyuns. I could eat that and be totally fine, and not gain an ounce. Of course it helped that I was super active in athletics, but I very rarely got sick. I could eat loads of ice cream, seriously, bowl after bowl after bowl. It was awesome.
Of course when you quit being so active, when you try to do those same things, it has a different affect on you. For the first 7 years after Greg and I got married, we ate like crap. Junk food was just part of our diet, and even though I did gain weight, it never really made me sick. The past two years has been a bit different, and especially the last few months and couple of weeks. I have not been fully able to enjoy a meal in quite a while. I mean, look at this super delicious meal we had a couple of weeks ago. I actually was able to eat it all, but then felt the after-effects early the next morning.
It has been so incredibly frustrating the last few weeks. Everything has been making me feel sick to my stomach, and I have been throwing up more than usual. It has made me just want to stop eating all together because I'm so afraid of throwing up, or just being sick. This has caused more weight loss and lack of sleep, which results in me being completely exhausted and always wanting to sleep.
After the meal above made a reappearance, I couldn't go back to sleep, so I decided to stay home from work. I absolutely hate doing that, and I really had a tough time debating what to do.
The night before I had seen this quote, and I had thought about it quite a bit.
For the first 3 years I was at my job, I never once called in sick, even during the year the Scleroderma first started, I didn't call in sick until I fell and hit my head. I feel like I push through every single day. I have to. I don't have an option, but every now and then I do need a good rest, so in keeping this quote in mind, I texted my boss and let him know I wouldn't be in. It was really nice to just sleep in and then watch Psych for a few hours. Much needed.
Unfortunately, the sickness didn't stop there.I continued to feel sick, and threw up a few more times. Once I saw what my weight was getting down to, I asked Greg if he thought I should call the doctor, and he said probably. I never know which doctor to call, but since I felt it was more Scleroderma related I called my Rheumy first. In speaking with the nurse, she asked if I had called my primary care physician (PCP). I felt like she was a little annoyed with me, because she said something about it sounding like a stomach bug. I think I would know the difference, so I decided to call me PCP, even though my Rheumy ended up calling that night.
I schedule an appointment with my PCP for Friday the 6th, and when I went in, he too was concerned about the weight loss. He asked me questions, looked at my file, and told us that I had a Hiatal Hernia. Apparently it was found back in October when I had my Endoscopy. Not that it's super serious, but it would have been nice to know this, and know that that could be part of the problem with my digestive system.
My PCP called my Rheumy just to touch base, and see what the next step should be. It was an interesting conversation to say the least, but I don't want to talk about that. They wanted me to go see my GI and see what he thought we should do. In the meantime Dr. Carlson gave me Reglan to help speed up the digestive process, and also had me set up an appointment to do a Gastric Emptying Study.
I really like both of my doctors, but to be honest, I went away from that appointment feeling a bit uneasy and somewhat scared. Talk of a feeding tube can be a big scary, but I don't know what more I can do. I don't know how to keep the food down. I've tried talking with my angry stomach, but it just doesn't want to listen to me.
The Gastric Emptying Study was quite interesting. I had read bad stuff from people who had done one, but I realize that it was more people who couldn't eat solid foods. Luckily I don't have as big of an issue, so I got all worked up for nothing. Basically I fasted for a few hours before the study, then I went and they made me some radioactive eggs, and toast with jam. I ate all of it in about 15 minutes, and it wasn't awful! It actually tasted better than some of the other eggs and toast I've had.
After stuffing my face they had me stand in front of their little machine for 2 minutes so it could track the food in my stomach. We had to come back every hour for four hours after that so they could do a two minute picture thingy. It wasn't bad, but made for a long day.
The next day I had an appointment with a Mental Health Counselor. My doctor had kind of recommended it for my 'eating disorder', but figured it would be pretty helpful with everything else as well.
I have to admit, I was quite nervous. I don't like talking to people about myself. I just don't. Plus, it's easier to say, "I'm doing fine" than to dig in and talk about my problems. But I was actually kind of impressed with the doctor. We did talk about some goals for the two weeks until I see him again. I've done okay with those goals, but I've also felt better so it's easier to eat better.
I got the results from the gastric emptying study, but they just said my stomach doesn't empty normal. I went and saw my GI yesterday (June 18). I wasn't sure what to expect. He just kind of explained the Gastroparesis to me (which is quite common in Sclero patients), and ways to help my stomach not hurt as much. I basically am not supposed to eat fruits, vegetables, or fatty foods. I guess I can puree the fruits and veggies (and meats), but that just doesn't sound super delicious. I'm also supposed to eat less, more often.He wants me to try domperidone instead of reglan, but before I can, I had to get an EKG. That was exciting. Love all these new adventures. We'll see what results I get from that and see if I can go on that other medicine.
I just want to feel better, and be able to eat whatever and not have to worry about the consequences, but unfortunately, I don't think that's going to happen. So here's what I want you to do. Go out and enjoy a nice juicy burger and fries for me!
