My last entry was back in February; so I'm going to try to catch you up. I wasn't feeling well for a while. As I started to feel better my friend Chris offered Frank and I her condo in Ocean City for a week. So we decided; since we haven't been on a vacation in a while, that we were going to go! I really love the beach, a lot more than I did when I was younger. It is just a relaxing and peaceful, and our trip was wonderful. My little brother Pete went with us (as well as Kate of course) and everyone really had a great time! We came home to new living room furniture (sofa and love seat) which was nice, and then we all got sick the following week.
That brings us to today, where everyone is definitely feeling better! I'm excited about my birthday coming up (Thursday); I'll be 34. It seems like just yesterday that Kate was born and I got married! So this week I have been on a big gratitude trip. I am so thankful for my life, and I have been so blessed with my family and friends. Frank and Kate are taking me out for my birthday on Saturday, but I have no idea where we are going! I think they are going to blind fold me in the car! I don't get a hint either, when they asked what I wanted I said to spend time with them. So I'm guessing that's what we are doing, going to spend the day together. Other than that I have no idea! It will definitely be a surprise!
I also have to post about my daughter. Kate and I both lead teams at our local Great Strides CF walk, but last year I just couldn't participate. (I wasn't feeling well and my grandmother had just passed away) This year we were talking about it and Kate said she'd like to take over my team this year and lead it for me. So she did. She and I worked on a montage for the walk this year and so far it seems to have gotten a really good response!
About Me
- Chrissy
- I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.
Tuesday, April 12, 2011
Thursday, February 17, 2011
Dreaming big...
Last night I laid in bed trying to sleep, but instead I was inspired to blog. Unfortunately I was too tired to get up and walk down the stairs and I knew that even if I could manage that I would not be able to go back up them. So I just laid there lost in my own thoughts.
What started me thinking?
I would have to say that Frank and I went to bed, and after getting in bed I realized my legs were itchy. Not bug bite itchy, but dry skin itchy. So Frank went down stairs to get my lotion, because he knew I couldn't make it down and back up again. So as I'm sitting there putting lotion on; I am reminded as to why I have dry skin that makes me itch. Not because it's winter, not because I take really hot showers or because of my medications; it is because my vitamins and minerals are low. It seems like every time I turn around something is reminding me that they are low. Like the cravings for tuna fish and turnip greens, and I don't mean craving as in "oh yeah that sounds good lets have that for dinner", I mean craving as in "OMG. I have to eat that right now, and if I don't get it I'm not really hungry for anything else".
I dropped my Critical Thinking class, because I can't think. Seriously, I'm forgetful and I get confused. So I decided that it would be a good idea to take a break. I have a clinic appointment next week and I'm hoping that NIH can help. I don't have health insurance so I am not able to get my IV therapy, which I really miss right now. I'd give anything to go it and be hooked up to a bag of multivitamin, trace minerals and lipids. So I'm hoping that some how my CF clinic might be able to help. I'm hoping that I can convince them to admit me for a tune up (you know you feel bad if you *want* in), but because this is all mito related who knows what they'll do. But a gal can dream, right?
What started me thinking?
I would have to say that Frank and I went to bed, and after getting in bed I realized my legs were itchy. Not bug bite itchy, but dry skin itchy. So Frank went down stairs to get my lotion, because he knew I couldn't make it down and back up again. So as I'm sitting there putting lotion on; I am reminded as to why I have dry skin that makes me itch. Not because it's winter, not because I take really hot showers or because of my medications; it is because my vitamins and minerals are low. It seems like every time I turn around something is reminding me that they are low. Like the cravings for tuna fish and turnip greens, and I don't mean craving as in "oh yeah that sounds good lets have that for dinner", I mean craving as in "OMG. I have to eat that right now, and if I don't get it I'm not really hungry for anything else".
I dropped my Critical Thinking class, because I can't think. Seriously, I'm forgetful and I get confused. So I decided that it would be a good idea to take a break. I have a clinic appointment next week and I'm hoping that NIH can help. I don't have health insurance so I am not able to get my IV therapy, which I really miss right now. I'd give anything to go it and be hooked up to a bag of multivitamin, trace minerals and lipids. So I'm hoping that some how my CF clinic might be able to help. I'm hoping that I can convince them to admit me for a tune up (you know you feel bad if you *want* in), but because this is all mito related who knows what they'll do. But a gal can dream, right?
Monday, February 7, 2011
I'm on E
So I woke up this morning absolutely wiped out, I'm not complaining about it per say; but it has become my "normal" over the past week. I really want some turnip greens and a tuna sandwich for lunch. However, I am just too tired to make anything...except maybe a bowl of cereal! I have homework for my most recent online class, and I just can not rub two brain cells together today to get it done.
You know when your car is low on gas how it's kinda sluggish on hills and sputters? That is how I feel. That's really the only way I can explain it...I can not think of any other time I've felt this way. Even when I had mono (all 4 times) I did not feel so drained. I slept a lot but now...now... I feel awake but empty (if that makes any sense).
So I was just thinking about why I want tuna and turnip greens (although I could eat spinach instead...YUM)
Tuna:
Protein, Niacin, B6, B12, selenium, magnesium, and potassium. There is more included but it isn't considered significant enough in them to list.
Turnip greens:
Protein, vitamin A, vitamin C, vitamin K, calcium, magnesium, and potassium. (to name a few)
Actually I'd really like a baby spinach salad with tuna or I'd settle for a tuna sub with baby spinach on it! LOL...
You know when your car is low on gas how it's kinda sluggish on hills and sputters? That is how I feel. That's really the only way I can explain it...I can not think of any other time I've felt this way. Even when I had mono (all 4 times) I did not feel so drained. I slept a lot but now...now... I feel awake but empty (if that makes any sense).
So I was just thinking about why I want tuna and turnip greens (although I could eat spinach instead...YUM)
Tuna:
Protein, Niacin, B6, B12, selenium, magnesium, and potassium. There is more included but it isn't considered significant enough in them to list.
Turnip greens:
Protein, vitamin A, vitamin C, vitamin K, calcium, magnesium, and potassium. (to name a few)
Actually I'd really like a baby spinach salad with tuna or I'd settle for a tuna sub with baby spinach on it! LOL...
Sunday, January 30, 2011
Is that running water?
So tonight is a wrestling pay per view and we have some friends over. Kate decided to cater and made spinach balls, hot tuna dip, home made salsa, stuffed mushroom caps, chicken and cheese quesadillas. I was the sous chef and helped her prep. Everyone finished about an hour ago, and I am sitting at the computer.
Why?
Well I have to go to the bathroom and I can't make it up my stairs. Seriously. I took a lyrica which is supposed to help and a muscle relaxer too. So far I got nothing. So I'm just kinda sitting here and hoping that I'll be able to make it after resting. I may have to crawl, which I have done before but not in a house full of people. I'm hoping it doesn't come to that. I'd be so embarrassed! Hell I'm even embarrassed that I'm limping around.
So onto non bathroom thoughts...I ordered a new vest from Hillrom and I really like it. I'm hoping that it will help me use the vest more often. The chest vest that I had before really only shook my front but this one does the back too, so here is hoping it works well. So far so good.
Other non bathroom thoughts include:
1. School. My class Paradigms of Health is almost over. I have really enjoyed it, and so far that's been par for the course for most of my on-line classes. Sure the group work drives me nuts sometimes, but I love the ability to do school work in my jammies and do treatments while participating in group discussions. Next class is Critical Thinking, and that is going to be interesting. Especially with my short term memory loss and confusion lately. LOL...
2. This whole thing in Egypt. Ok so I'm sure I am showing my ignorance here but after reading several articles, all I got is that the Egyptians want Mubarak to step down. I do not understand why people are rioting though (protesting I get). They're hurting Egypt, not helping. I'll be praying for the country to find peace.
3. Royal Rumble. So confused. I haven't really watched an episode all the way through in a while...so now...I'm playing catch up. Luckily it is being recorded on our DVR. I can watch it tomorrow, lol, with out all of the talking.
Ok I am going to try to make it...cross your fingers for me!
Why?
Well I have to go to the bathroom and I can't make it up my stairs. Seriously. I took a lyrica which is supposed to help and a muscle relaxer too. So far I got nothing. So I'm just kinda sitting here and hoping that I'll be able to make it after resting. I may have to crawl, which I have done before but not in a house full of people. I'm hoping it doesn't come to that. I'd be so embarrassed! Hell I'm even embarrassed that I'm limping around.
So onto non bathroom thoughts...I ordered a new vest from Hillrom and I really like it. I'm hoping that it will help me use the vest more often. The chest vest that I had before really only shook my front but this one does the back too, so here is hoping it works well. So far so good.
Other non bathroom thoughts include:
1. School. My class Paradigms of Health is almost over. I have really enjoyed it, and so far that's been par for the course for most of my on-line classes. Sure the group work drives me nuts sometimes, but I love the ability to do school work in my jammies and do treatments while participating in group discussions. Next class is Critical Thinking, and that is going to be interesting. Especially with my short term memory loss and confusion lately. LOL...
2. This whole thing in Egypt. Ok so I'm sure I am showing my ignorance here but after reading several articles, all I got is that the Egyptians want Mubarak to step down. I do not understand why people are rioting though (protesting I get). They're hurting Egypt, not helping. I'll be praying for the country to find peace.
3. Royal Rumble. So confused. I haven't really watched an episode all the way through in a while...so now...I'm playing catch up. Luckily it is being recorded on our DVR. I can watch it tomorrow, lol, with out all of the talking.
Ok I am going to try to make it...cross your fingers for me!
Sunday, January 23, 2011
fear and death
So today, I was feeling a little down thinking about those who have passed because of CF.I did not know any of them personally but being in the same support circle; I felt as though I did-in a way.It always stings when someone passes because of CF, but so far this year 3 have passed. 3. I just think of that number and I am scared out of my mind. Sad beyond belief. And that is only 3 that I had heard about my self. I am doing well lung wise. No recent chest infections or anything. My sinuses seem to always be infected lately, but I'm used to it. My muscles are always achy here lately--but I'm used to that too. My digestive system is still wonky, but mainly because we are trying to pin point what medication and how much I need. My joints have been bothering me which is new, and alarming because I have no idea if it is my mitochondrial disease progressing or if it is just because it has been so cold lately.
Anyway--it is all just a lot. The deaths, I mean. I can deal with pain or discomfort but death breaks my heart. I believe in heaven; but my heart breaks for those who are left behind. The sorrow they'll endure...I wish no one had to deal with it.
It's part of life, I know. It's not supposed to be easy, I know that too. I suppose I just think it is unfair that these people have to watch a loved one struggle and suffer...and then have to pick up the pieces when they are gone. I don't think it is fair. I think it is because I am close to friends and family that this bothers me so. Because I know one day it will be their turn. Their turn to watch and then to have to pick up the pieces.
Anyway--it is all just a lot. The deaths, I mean. I can deal with pain or discomfort but death breaks my heart. I believe in heaven; but my heart breaks for those who are left behind. The sorrow they'll endure...I wish no one had to deal with it.
It's part of life, I know. It's not supposed to be easy, I know that too. I suppose I just think it is unfair that these people have to watch a loved one struggle and suffer...and then have to pick up the pieces when they are gone. I don't think it is fair. I think it is because I am close to friends and family that this bothers me so. Because I know one day it will be their turn. Their turn to watch and then to have to pick up the pieces.
January 22, 1920
Up late doing school work! No worries though I have really decided that I am so lucky to get this experience, it is the best thing I have done in a while. (Not the best thing ever because that would be Kate!)
So January 22 my grandmother would have been 91 years old; I can hardly believe that she is gone even though it has been 9 months since she passed. I still miss her like it was yesterday. Frank, Kate and I went to her grave, I was afraid that if she thought I forgot she might haunt me! LOL One year my dad forgot her birthday and she had a fit! She never let him live it down either. I was going to take her a bag of dor-et- toes (the way she pronounced Doritos) but decided against leaving a bag of chips on a grave.
My mother in law has to get IV therapy to boost her immune system, and despite having not been to the therapy center in almost a year--the girls still remembered me. I'm happy the did, because I still remember them. I'm really hoping this insurance issue gets resolved so that I can go back for my therapy. It really did help me feel better. I complained about it a little while I was going--but after not going for a long time; I can really feel the difference. I'm a little jealous she gets to go! I hope they help her to feel better.
So January 22 my grandmother would have been 91 years old; I can hardly believe that she is gone even though it has been 9 months since she passed. I still miss her like it was yesterday. Frank, Kate and I went to her grave, I was afraid that if she thought I forgot she might haunt me! LOL One year my dad forgot her birthday and she had a fit! She never let him live it down either. I was going to take her a bag of dor-et- toes (the way she pronounced Doritos) but decided against leaving a bag of chips on a grave.
My mother in law has to get IV therapy to boost her immune system, and despite having not been to the therapy center in almost a year--the girls still remembered me. I'm happy the did, because I still remember them. I'm really hoping this insurance issue gets resolved so that I can go back for my therapy. It really did help me feel better. I complained about it a little while I was going--but after not going for a long time; I can really feel the difference. I'm a little jealous she gets to go! I hope they help her to feel better.
Sunday, January 2, 2011
2011
HAPPY NEW YEAR!
Christmas got a little easier after my last blog entry. Maybe I just needed to get it out. Anyhow, we spent the New Years at a friends house, and she had a fondue dinner (appetizer, main and dessert) and then on the first day of the New Year we went over to spend it with our family! All in all everything has been going pretty well...except...I'm sick. Not just blah either- I'm uber bitch. My sinuses are so full my entire head feels like it might just explode if anyone else pisses me off. And that's the problem. Every little thing today seems to be annoying me. I just want to go back to bed and sleep.
I guess it all started last night, but I took some sinus meds and thought it was the cold air that was bothering me. When I woke up this morning I figured it out. My glands are swollen, my eyes are watery, etc.
I'm grumpy too, I usually do not get grumpy just cause I'm sick, but it seems like that's the case this time. I doubled up on my antibiotics, I think I have a sinus infection. Again.
Anyway- I am blogging today to wish you all a happy new year, not to complain! So I hope you all have a very happy and healthy New Year. 2010 is over, and while it was a good year for some people- it was awful for others...no matter which it was for you I hope 2011 is a good one!
Christmas got a little easier after my last blog entry. Maybe I just needed to get it out. Anyhow, we spent the New Years at a friends house, and she had a fondue dinner (appetizer, main and dessert) and then on the first day of the New Year we went over to spend it with our family! All in all everything has been going pretty well...except...I'm sick. Not just blah either- I'm uber bitch. My sinuses are so full my entire head feels like it might just explode if anyone else pisses me off. And that's the problem. Every little thing today seems to be annoying me. I just want to go back to bed and sleep.
I guess it all started last night, but I took some sinus meds and thought it was the cold air that was bothering me. When I woke up this morning I figured it out. My glands are swollen, my eyes are watery, etc.
I'm grumpy too, I usually do not get grumpy just cause I'm sick, but it seems like that's the case this time. I doubled up on my antibiotics, I think I have a sinus infection. Again.
Anyway- I am blogging today to wish you all a happy new year, not to complain! So I hope you all have a very happy and healthy New Year. 2010 is over, and while it was a good year for some people- it was awful for others...no matter which it was for you I hope 2011 is a good one!
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