Adults please

lexymarie04 · Apr 22, 2012

Hi, I need some help. Im 25 married with CF with a 4 y/o son. I also along with CF have Anemia, fibromyalgia, osteopenia, depression, anxiety, MRSA on and off and currently being treated for MAC. I have been a slacker for this year dealing with depression and haven't been doing my breathing treatments like I should. I do take the antibiotics like I should which I'm taking 4 right now to treat my MAC and other infection. But I'm getting fed up with everything it seems. My FEV 1 is 50% but I feel as if it could be better. I have been dealing with horrible stomach issues that noone an figure out I feel like I have Celiacs but doctors seem to think im nuts. I have pancreatic defiency and take Zenpep 5 with meals and snacks. Please any input would be nice anyone else deal with depression and not wanting to do treatments????

lexymarie04 · Apr 22, 2012

Hi, I need some help. Im 25 married with CF with a 4 y/o son. I also along with CF have Anemia, fibromyalgia, osteopenia, depression, anxiety, MRSA on and off and currently being treated for MAC. I have been a slacker for this year dealing with depression and haven't been doing my breathing treatments like I should. I do take the antibiotics like I should which I'm taking 4 right now to treat my MAC and other infection. But I'm getting fed up with everything it seems. My FEV 1 is 50% but I feel as if it could be better. I have been dealing with horrible stomach issues that noone an figure out I feel like I have Celiacs but doctors seem to think im nuts. I have pancreatic defiency and take Zenpep 5 with meals and snacks. Please any input would be nice anyone else deal with depression and not wanting to do treatments????

Printer · Apr 22, 2012

NOBODY WANTS TO DO TREATMENTS.

We do them so that we can maintain some level of health.

God knows that there are lods of things that I would rather be doing than sucking on 7% Sailine.

Bill

Printer · Apr 22, 2012

NOBODY WANTS TO DO TREATMENTS.

We do them so that we can maintain some level of health.

God knows that there are lods of things that I would rather be doing than sucking on 7% Sailine.

Bill

Aboveallislove · Apr 22, 2012

Lexy,
I'm so sorry you are having such a hard time now. My younger brother suffered from major depression and I know from him how it makes you not want to do what is required to stay healthy. It was a long haul, but with good treatment and medication, he is doing great now. For him, it was a matter of one day at a time. . . today I will do X. Not thinking about tomorrow. Not thinking about the next day. Not thinking about the day before when he might not have done his best. . . but saying to himself I can do X now. Sending you a big hug and hoping that you too push forward and do just tonight. And go from there.

Aboveallislove · Apr 22, 2012

Lexy,
I'm so sorry you are having such a hard time now. My younger brother suffered from major depression and I know from him how it makes you not want to do what is required to stay healthy. It was a long haul, but with good treatment and medication, he is doing great now. For him, it was a matter of one day at a time. . . today I will do X. Not thinking about tomorrow. Not thinking about the next day. Not thinking about the day before when he might not have done his best. . . but saying to himself I can do X now. Sending you a big hug and hoping that you too push forward and do just tonight. And go from there.

Havoc · Apr 22, 2012

I look at this cycle as an endless vortex. You're depressed and you don't do your treatments, which makes you depressed because you are sick and feel your PFT's could be higher and then you continue to not do treatments ad infinitum.

You're going to have to make a choice to break that cycle. While it's nice to commiserate with others who feel the same as you do, it never changes anything. You have to take control of your health, if not for yourself do it for your son.

Best of luck!

Havoc · Apr 22, 2012

I look at this cycle as an endless vortex. You're depressed and you don't do your treatments, which makes you depressed because you are sick and feel your PFT's could be higher and then you continue to not do treatments ad infinitum.

You're going to have to make a choice to break that cycle. While it's nice to commiserate with others who feel the same as you do, it never changes anything. You have to take control of your health, if not for yourself do it for your son.

Best of luck!

lilmac1177 · Apr 22, 2012

<span style="font-family: tahoma,arial,helvetica,sans-serif; color: #3366ff;">i agree w/ that Havoc character ^^^<img title="Wink" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-wink.gif" alt="Wink" border="0" />

lilmac1177 · Apr 22, 2012

<span style="font-family: tahoma,arial,helvetica,sans-serif; color: #3366ff;">i agree w/ that Havoc character ^^^<img title="Wink" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-wink.gif" alt="Wink" border="0" />

lexymarie04 · Apr 23, 2012

Thanks so much everyone for the encouragement and motivation. I know whats required of me to do well believe that! I guess my whole probably is I have dealt with so much in just my 25 years that even though I have a son I feel like my body and mind has taken all it can take. Just for a lil cap i lost my 26 y/o brother due to cystic fibrosis and saw him battle with this disease at the time i was 16 then 3 years later i lost my mother due to lupus and cancer and i saw her battle my whole life with being sick. I was basically my whole life dealing with this illness alone taking care of myself my father never cared and still isn't much in my life. Ive talked to tons of therapists doctors and everyone tells me you've been through alot heres some drugs to help but it doesnt take away from everything i still think it about it everyday. Or they tell me to get on with my life , well yeah i try that but its already emotionally screwed me up. Yeah yes everyday I do think about my son and keeping myself healthy cause he needs me i guess somewhere in my head i know my husband would take good care of him thats why we had a child even though i was sick at the time. I just dont i guess know how to quit jumping these hurdles i been dealing with and stick to doing whats best for me and keeping this cf under control.

lexymarie04 · Apr 23, 2012

Thanks so much everyone for the encouragement and motivation. I know whats required of me to do well believe that! I guess my whole probably is I have dealt with so much in just my 25 years that even though I have a son I feel like my body and mind has taken all it can take. Just for a lil cap i lost my 26 y/o brother due to cystic fibrosis and saw him battle with this disease at the time i was 16 then 3 years later i lost my mother due to lupus and cancer and i saw her battle my whole life with being sick. I was basically my whole life dealing with this illness alone taking care of myself my father never cared and still isn't much in my life. Ive talked to tons of therapists doctors and everyone tells me you've been through alot heres some drugs to help but it doesnt take away from everything i still think it about it everyday. Or they tell me to get on with my life , well yeah i try that but its already emotionally screwed me up. Yeah yes everyday I do think about my son and keeping myself healthy cause he needs me i guess somewhere in my head i know my husband would take good care of him thats why we had a child even though i was sick at the time. I just dont i guess know how to quit jumping these hurdles i been dealing with and stick to doing whats best for me and keeping this cf under control.

nmw0615 · Apr 23, 2012

I have to agree with what people have said. It's a constant internal battle and like Aboveallislove, I've found that just thinking about one treatment at a time instead of everything else is what helps me. In the morning, I focus on my first treatment and my first set of pills. In the evening, I think about that treatment and those pills. If I try and think too far ahead, I depress myself and start to fall of the wagon.

I also don't beat myself up if I miss one treatment. I know it's wrong to miss, but I also know that as long as I only miss once every once in a while, I'll still be okay. I can take a half-day break from CF life and it will help the mental side, which in turn puts me in a better frame of mind to deal with the physical side.

I sincerely hope you are able to figure out your own way to fight these little daily battles and get yourself on a track that will help you enjoy every single day.

nmw0615 · Apr 23, 2012

I have to agree with what people have said. It's a constant internal battle and like Aboveallislove, I've found that just thinking about one treatment at a time instead of everything else is what helps me. In the morning, I focus on my first treatment and my first set of pills. In the evening, I think about that treatment and those pills. If I try and think too far ahead, I depress myself and start to fall of the wagon.

I also don't beat myself up if I miss one treatment. I know it's wrong to miss, but I also know that as long as I only miss once every once in a while, I'll still be okay. I can take a half-day break from CF life and it will help the mental side, which in turn puts me in a better frame of mind to deal with the physical side.

I sincerely hope you are able to figure out your own way to fight these little daily battles and get yourself on a track that will help you enjoy every single day.

rmotion · Apr 23, 2012

Yeah you need to look at gluten as a contributing factor in your health.

http://www.greenmedinfo.com/page/dark-side-wheat-new-perspectives-celiac-disease-wheat-intolerance-sayer-ji

Over 50% of the population has a problem with wheat. In my opinion 100% of CF's that have any residual bowel problems has a problem with gluten. You might not have celiac but that is just the tip of the iceberg.
All your symptoms are related to gluten toxicity - google it for gluten intolerance and symptoms.
I have been gluten free over 5 years and it is a huge difference for me. I was in pretty sad shape. Now my bowels and health are much better gluten free.
It is not what you give up its what you gain.
No one is going to quick fix your CF you have to do it methodically one step at a time. Our bodies, yes even us broken Cf's, have an inate ability to heal if given the right nutrition.
First you have to decide if you are going to fight or give up. NO one can make that decision but you!

As Havoc, stated above it is a vicious cycle and we have all been there and just want some respit from this damn disease.
Check out some of my other posts and posts from others regarding nutrition and health.

rmotion · Apr 23, 2012

Yeah you need to look at gluten as a contributing factor in your health.

http://www.greenmedinfo.com/page/dark-side-wheat-new-perspectives-celiac-disease-wheat-intolerance-sayer-ji

Over 50% of the population has a problem with wheat. In my opinion 100% of CF's that have any residual bowel problems has a problem with gluten. You might not have celiac but that is just the tip of the iceberg.
All your symptoms are related to gluten toxicity - google it for gluten intolerance and symptoms.
I have been gluten free over 5 years and it is a huge difference for me. I was in pretty sad shape. Now my bowels and health are much better gluten free.
It is not what you give up its what you gain.
No one is going to quick fix your CF you have to do it methodically one step at a time. Our bodies, yes even us broken Cf's, have an inate ability to heal if given the right nutrition.
First you have to decide if you are going to fight or give up. NO one can make that decision but you!

As Havoc, stated above it is a vicious cycle and we have all been there and just want some respit from this damn disease.
Check out some of my other posts and posts from others regarding nutrition and health.

lexymarie04 · Apr 23, 2012

Thank you so much everyone I really appreciate it to the fullest. And believe me today is a new day i will take it one step at a time. And thank you Rmotion I have recently been dealing with tons of stomach problems and have looked up celiacs a friend of mine just got diagnosed with the disease. I believe it could also be triggering my depression symptoms lately due to the fact every time I eat I am layed up in the bed crippled for days due to the belly pain. Going to the doctors this week to get tested hopefully the doctor can figure something out for me to bring me some relief. I am a fighter always have been thats whats so weird of me that I feel like Im giving up and I sure don't want too!!!!

lexymarie04 · Apr 23, 2012

Thank you so much everyone I really appreciate it to the fullest. And believe me today is a new day i will take it one step at a time. And thank you Rmotion I have recently been dealing with tons of stomach problems and have looked up celiacs a friend of mine just got diagnosed with the disease. I believe it could also be triggering my depression symptoms lately due to the fact every time I eat I am layed up in the bed crippled for days due to the belly pain. Going to the doctors this week to get tested hopefully the doctor can figure something out for me to bring me some relief. I am a fighter always have been thats whats so weird of me that I feel like Im giving up and I sure don't want too!!!!

Keepercjr · Apr 23, 2012

I'm sorry Lexi for your situation. I 110% agree with Rob. When I stopped eating wheat I saw very noticeable improvement in my digestion. I'm now convinced I have IBS that is triggered by wheat. All along I thought it was my gallbladder (and then lack of a gallbladder when I had it removed) that was causing my digestive problems but I swear it has totally resolved since I cut out wheat. I eat more fat than I ever have before and have NO problems. Wheat can affect the brain as well (crazy but true). For a great scientific take on all the ways wheat can affect you read the book "Wheatbelly" by Dr. William Davis. Also for a great treatment for anemia look into Floradix. It is the most highly absorbed supplement on the market. When I was iron deficient when pregnant that is what my midwife recommended and it worked. Are you getting enough omega 3s in your diet? They are scientifically proven to affect mood (as you need to restore a more natural omega 3:6 ratio). I take fermented cod liver oil daily and so does the rest of my family. I would love to eat more fish but it isn't happening right now. Oh here is a good summary of diet and depression: http://www.marksdailyapple.com/diet-for-depression/#axzz1stBVLoAV I also wanted to say that I know how hard it is to care for little ones and also have to take care of yourself. I hate doing my treatments. And I skip them - sometimes quite often, sometimes not much. But I just have to FORCE myself to do it. You can do it.

Edited: I just saw your last update. I woudn't look to the doctor to make you feel better about gastro problems if you suspect wheat. Even if you test negative you could still be having problems with wheat. Wheatbelly explains it really well. My absolut best advice for you is to give up grains for 2 weeks (no cheating for those 2 weeks) and I'm guessing you will see immediate and remarkable improvement. Our diet consists of mainly of meat (beef and chicken and occasional fish and shrimp) and local seasonal veggies. For extra carbs I eat sweet potatoes and sometimes white rice. I also consume whole milk greek yogurt, cheese, raw milk and fruits (strawberries are in season now and I use frozen blueberries to make a smoothie every morning). I know thinking about not eating wheat can seem impossible but it IS possible and isn't as hard as it first appears. I can give you a lot more info if you want.

Keepercjr · Apr 23, 2012

I'm sorry Lexi for your situation. I 110% agree with Rob. When I stopped eating wheat I saw very noticeable improvement in my digestion. I'm now convinced I have IBS that is triggered by wheat. All along I thought it was my gallbladder (and then lack of a gallbladder when I had it removed) that was causing my digestive problems but I swear it has totally resolved since I cut out wheat. I eat more fat than I ever have before and have NO problems. Wheat can affect the brain as well (crazy but true). For a great scientific take on all the ways wheat can affect you read the book "Wheatbelly" by Dr. William Davis. Also for a great treatment for anemia look into Floradix. It is the most highly absorbed supplement on the market. When I was iron deficient when pregnant that is what my midwife recommended and it worked. Are you getting enough omega 3s in your diet? They are scientifically proven to affect mood (as you need to restore a more natural omega 3:6 ratio). I take fermented cod liver oil daily and so does the rest of my family. I would love to eat more fish but it isn't happening right now. Oh here is a good summary of diet and depression: http://www.marksdailyapple.com/diet-for-depression/#axzz1stBVLoAV I also wanted to say that I know how hard it is to care for little ones and also have to take care of yourself. I hate doing my treatments. And I skip them - sometimes quite often, sometimes not much. But I just have to FORCE myself to do it. You can do it.

Edited: I just saw your last update. I woudn't look to the doctor to make you feel better about gastro problems if you suspect wheat. Even if you test negative you could still be having problems with wheat. Wheatbelly explains it really well. My absolut best advice for you is to give up grains for 2 weeks (no cheating for those 2 weeks) and I'm guessing you will see immediate and remarkable improvement. Our diet consists of mainly of meat (beef and chicken and occasional fish and shrimp) and local seasonal veggies. For extra carbs I eat sweet potatoes and sometimes white rice. I also consume whole milk greek yogurt, cheese, raw milk and fruits (strawberries are in season now and I use frozen blueberries to make a smoothie every morning). I know thinking about not eating wheat can seem impossible but it IS possible and isn't as hard as it first appears. I can give you a lot more info if you want.

Adults please

New member

New member

Active member

Active member

Super Moderator

Super Moderator

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

Keepercjr

Guest

Keepercjr

Guest