Where to begin
I just looked up when I wrote my last post and it seems like that was ages ago! As I start my breathing treatment, which I think is needed because its getting hard to breathe, I realize I don't really have any point or overall theme for this post. It is just going to be a rehashing of what has occurred during significant health moments.
My family and I attended our church's Annual Christmas Soup Supper. This is our new church and our first Christmas here so we didn't know what to expect. On the invitation it said dress in your Christmas best. Well, to our family when you say best, you mean really nice clothes. Alas we live in California and are always overdressed. People were not poorly dressed, I just think they could have tried harder. This complaint has nothing to do with health, but I like to have things to go to where I can dress up. It makes me feel better to make up myself and I want others to do the same. I looked hot. First time in a while for full make-up. I wore a herringbone dress with crimson patent leather wedges with bows (they look way better than that description), an awesome high waist belt and my ruffle black wool sweater.
This dinner was a GF person's nightmare. I arrived at the table to see a basket full of bread and salad topped to the brim with croutons. I usually wouldn't eat the bread because I don't like bread, but salad, with croutons....When the nice older lady seated next to me and I got into a discussion, eating gluten free came up when she past the bread. She was quite confused what that meant, but once I refused the salad because of croutons she said, that's why you must be so skinny. You have no idea lady, its just the beginning.
The Jr.high kids were our servers for the night and when our cute boy came round with only one kind of soup I started thinking what to do. It was a chicken, vegetable soup, looked like corn chowder broth, there were pieces of corn. So I decided I would eat it. BIG MISTAKE. About an hour later when I had moved to the Young Adults table and was singing Christmas carols the inside of my mouth started tingling. I then asked one of the other girls in the group who is GF if she had the soup. She said no, she had gone to ask the kitchen ladies what they put in the soup and there was definitely flour. Okay first gluten experience in about 4 or 5 weeks lets see what the reaction will be. An hour after that my stomach was all upset, I describe it as having an acidy stomach. My stomach feels all full and it seems to be crowding my wind pipe because I find it hard to breathe. I barely get home before my nose just runs and runs and I expel a huge glob of mucus. The mucus I'm familiar with during those mucus runs I spoke about. It clicked. This was the reaction I was having for the past six months a lot after I ate. Coughing and having a runny nose. It just proved my allergy to me. I sat in the bathroom for a bit trying not to throw up. I finally decided to take some benadryl and tried to sleep.
The other event of the evening was I was introduced to another person with CF in my congregation. It is awkward to meet someone else with CF. Everyone around us, wants us to discuss our lives as some kind of coping method. I do think we need to talk to each other and I have. But really all I think about when I do first meet someone else with CF is, Congrats you're genetically screwed like me and we haven't died yet! It's morbid, its awful, its the truth. This guy is older than me and it is a great accomplishment or miracle he is still alive and that is what I want, to live as long or longer than his current age. Back to the night, it wasn't the place to talk about our disease, we were trying to celebrate Christmas with our families. I think we both felt that and just kind of left it at that. Not to mention, we are told not to be around other CFers so when people put you together without masks you kind of freak out.
Thursday was a pleasant, fun day of baking. My friend and I made a great effort to bake chocolate Madeline's from my cookbook. One problem, I read the instructions too late and I needed a Madeline tin. Didn't know they had those, but how else would you get the fun shell shape? Well, we improvised the book said you could just use a muffin tin. These Madeline's were very moist but the favor was lacking. It was there, just not as much as I wanted. My friend had the brilliant idea of making puppy chow or muddy buddies after looking at the Rice Chex box that donned the Gluten-free symbol. That's right General Mills is getting on the Gluten-free wagon! I think Rice chex has always been gluten free, but now they are really making sure people realize it. So melting the heavenly combination of peanut butter and chocolate and butter, pour over rice chex mix, pour in plastic bag with powdered sugar and SHAKE. A great, quick, fun gluten free snack!!
We then went out for Mexican food. I'm thinking corn made everything! This was one of the first real eating out experiences and I was hoping for the best. I had a tamale which said it was made with corn meal. I had some sinus, coughing issues later, but not as full blown as the previous night and I don't really think I had a reaction. I don't know.....
Friday was the day I realized I didn't have the lung capacity I was once use to. I met up with some girls from college that were all significant people in my life during college. We keep in touch here and there so it was a mini reunion. We had dinner and then watched the boat parade. This time I choose a salad and prayed the dressing wasn't full of wheat as a thickener.I announced I was gluten free and had another discussion. Gee, just once I wish I didn't have to talk about health issues or the newest one I have. We walked around the island before the parade where I couldn't keep up with the girls. In the past I out walked everyone, I kept up with others taller than me. But that night, I had to be slow. It was also cold out, so the cold air was harsher. Man, not working out and sitting most of the time for the past couple of weeks has not been good for my lungs. I finally had to cough up some stuff, but for the most part my force of breathe was strong, it was just kind of hard and faster. I told the girls I couldn't walk anymore, they understood, but I just hated to stop them from doing what they wanted and it was fun to look at all the beautifully decorated houses. Two of the girls had baked cookies for the event and we all joked about how they weren't any good so I wasn't missing anything. I'm glad I do have friends that can joke along with me and help me see the light side of things. I really didn't feel like I missed out and besides I had my puppy chow, which they all enjoyed!
I got home and was exhausted from all the walking. I'm glad I did do that walking, it showed me I need to push myself when I do work out and get stronger lungs. Sadly, I ended up coughing up bloody mucus. UGH, it reminded me of all the red lights and decorations....Why do I have to think things like that! So I didn't do a full breathing treatment for the next 24 hours which was alright, but today I feel like I'm clearing it out.
The rest of the weekend was pretty basic except for last night's sunset. My mom and I drove down to the beach and watched the horizon. How beautiful a day, 70's, clouds coming in so the sun painted them pinks and yellows, Catalina Island was crystal clear. How magnificent a place we live. I look out at that ocean everyday, the vastness of it all. How my problems are so insignificant and really I should share in the beauty. At times its hard, but God is bigger.
Tomorrow, I'm getting out of bed at 7:30am. NO excuses, I won't do my treatment right away. I've decided its one of the reasons I keep staying in bed so long. I know I have to do my breathing treatment and if I don't do it first thing, it gets harder and harder to do it. I'm going to do some stretching and hopefully I'm hungry right away otherwise I'll take a quick bath. Then I'll come back to my treatment. I've never liked eating before my treatments but they take so long in the mornings now it's throwing off my eating schedule. I have to wait 30 minutes at least after eating to do my treatment, so I might become a hobbit, they have second breakfast. I'll just eat a tiny bit then do my treatment and then eat a full meal later. Getting up tomorrow is going to be easier because I have my follow up appointment with the First Line Therapy nutritionist. Think its a waste of time, but we shall see. Alright now I will report if I successfully get out of bed at the proper time. If I don't I give you permission to take my Christmas gifts and yell at me.
I'm too tired now to proofread this so deal with it
My family and I attended our church's Annual Christmas Soup Supper. This is our new church and our first Christmas here so we didn't know what to expect. On the invitation it said dress in your Christmas best. Well, to our family when you say best, you mean really nice clothes. Alas we live in California and are always overdressed. People were not poorly dressed, I just think they could have tried harder. This complaint has nothing to do with health, but I like to have things to go to where I can dress up. It makes me feel better to make up myself and I want others to do the same. I looked hot. First time in a while for full make-up. I wore a herringbone dress with crimson patent leather wedges with bows (they look way better than that description), an awesome high waist belt and my ruffle black wool sweater.
This dinner was a GF person's nightmare. I arrived at the table to see a basket full of bread and salad topped to the brim with croutons. I usually wouldn't eat the bread because I don't like bread, but salad, with croutons....When the nice older lady seated next to me and I got into a discussion, eating gluten free came up when she past the bread. She was quite confused what that meant, but once I refused the salad because of croutons she said, that's why you must be so skinny. You have no idea lady, its just the beginning.
The Jr.high kids were our servers for the night and when our cute boy came round with only one kind of soup I started thinking what to do. It was a chicken, vegetable soup, looked like corn chowder broth, there were pieces of corn. So I decided I would eat it. BIG MISTAKE. About an hour later when I had moved to the Young Adults table and was singing Christmas carols the inside of my mouth started tingling. I then asked one of the other girls in the group who is GF if she had the soup. She said no, she had gone to ask the kitchen ladies what they put in the soup and there was definitely flour. Okay first gluten experience in about 4 or 5 weeks lets see what the reaction will be. An hour after that my stomach was all upset, I describe it as having an acidy stomach. My stomach feels all full and it seems to be crowding my wind pipe because I find it hard to breathe. I barely get home before my nose just runs and runs and I expel a huge glob of mucus. The mucus I'm familiar with during those mucus runs I spoke about. It clicked. This was the reaction I was having for the past six months a lot after I ate. Coughing and having a runny nose. It just proved my allergy to me. I sat in the bathroom for a bit trying not to throw up. I finally decided to take some benadryl and tried to sleep.
The other event of the evening was I was introduced to another person with CF in my congregation. It is awkward to meet someone else with CF. Everyone around us, wants us to discuss our lives as some kind of coping method. I do think we need to talk to each other and I have. But really all I think about when I do first meet someone else with CF is, Congrats you're genetically screwed like me and we haven't died yet! It's morbid, its awful, its the truth. This guy is older than me and it is a great accomplishment or miracle he is still alive and that is what I want, to live as long or longer than his current age. Back to the night, it wasn't the place to talk about our disease, we were trying to celebrate Christmas with our families. I think we both felt that and just kind of left it at that. Not to mention, we are told not to be around other CFers so when people put you together without masks you kind of freak out.
Thursday was a pleasant, fun day of baking. My friend and I made a great effort to bake chocolate Madeline's from my cookbook. One problem, I read the instructions too late and I needed a Madeline tin. Didn't know they had those, but how else would you get the fun shell shape? Well, we improvised the book said you could just use a muffin tin. These Madeline's were very moist but the favor was lacking. It was there, just not as much as I wanted. My friend had the brilliant idea of making puppy chow or muddy buddies after looking at the Rice Chex box that donned the Gluten-free symbol. That's right General Mills is getting on the Gluten-free wagon! I think Rice chex has always been gluten free, but now they are really making sure people realize it. So melting the heavenly combination of peanut butter and chocolate and butter, pour over rice chex mix, pour in plastic bag with powdered sugar and SHAKE. A great, quick, fun gluten free snack!!
We then went out for Mexican food. I'm thinking corn made everything! This was one of the first real eating out experiences and I was hoping for the best. I had a tamale which said it was made with corn meal. I had some sinus, coughing issues later, but not as full blown as the previous night and I don't really think I had a reaction. I don't know.....
Friday was the day I realized I didn't have the lung capacity I was once use to. I met up with some girls from college that were all significant people in my life during college. We keep in touch here and there so it was a mini reunion. We had dinner and then watched the boat parade. This time I choose a salad and prayed the dressing wasn't full of wheat as a thickener.I announced I was gluten free and had another discussion. Gee, just once I wish I didn't have to talk about health issues or the newest one I have. We walked around the island before the parade where I couldn't keep up with the girls. In the past I out walked everyone, I kept up with others taller than me. But that night, I had to be slow. It was also cold out, so the cold air was harsher. Man, not working out and sitting most of the time for the past couple of weeks has not been good for my lungs. I finally had to cough up some stuff, but for the most part my force of breathe was strong, it was just kind of hard and faster. I told the girls I couldn't walk anymore, they understood, but I just hated to stop them from doing what they wanted and it was fun to look at all the beautifully decorated houses. Two of the girls had baked cookies for the event and we all joked about how they weren't any good so I wasn't missing anything. I'm glad I do have friends that can joke along with me and help me see the light side of things. I really didn't feel like I missed out and besides I had my puppy chow, which they all enjoyed!
I got home and was exhausted from all the walking. I'm glad I did do that walking, it showed me I need to push myself when I do work out and get stronger lungs. Sadly, I ended up coughing up bloody mucus. UGH, it reminded me of all the red lights and decorations....Why do I have to think things like that! So I didn't do a full breathing treatment for the next 24 hours which was alright, but today I feel like I'm clearing it out.
The rest of the weekend was pretty basic except for last night's sunset. My mom and I drove down to the beach and watched the horizon. How beautiful a day, 70's, clouds coming in so the sun painted them pinks and yellows, Catalina Island was crystal clear. How magnificent a place we live. I look out at that ocean everyday, the vastness of it all. How my problems are so insignificant and really I should share in the beauty. At times its hard, but God is bigger.
Tomorrow, I'm getting out of bed at 7:30am. NO excuses, I won't do my treatment right away. I've decided its one of the reasons I keep staying in bed so long. I know I have to do my breathing treatment and if I don't do it first thing, it gets harder and harder to do it. I'm going to do some stretching and hopefully I'm hungry right away otherwise I'll take a quick bath. Then I'll come back to my treatment. I've never liked eating before my treatments but they take so long in the mornings now it's throwing off my eating schedule. I have to wait 30 minutes at least after eating to do my treatment, so I might become a hobbit, they have second breakfast. I'll just eat a tiny bit then do my treatment and then eat a full meal later. Getting up tomorrow is going to be easier because I have my follow up appointment with the First Line Therapy nutritionist. Think its a waste of time, but we shall see. Alright now I will report if I successfully get out of bed at the proper time. If I don't I give you permission to take my Christmas gifts and yell at me.
I'm too tired now to proofread this so deal with it