Like me, you had a late diagnosis compared to most people with CF. Can you explain how you were finally diagnosed with Cystic Fibrosis?
For many years I struggled with GI symptoms, chronic sinus infections and low weight. Doctors were unable to connect pieces until I was 31 and diagnosed with pancreatic insufficiency. After the pancreatic insufficiency results and a borderline sweat test, the pieces were put together.
I am sure getting a CF diagnosis as an adult was life altering. Your children were also diagnosed with CF which I am sure added to the shock. Do you mind sharing a little bit about what it was like receiving three CF diagnoses in one family over a short period of time.
I was told the chances my children had CF were very slim, due to the genetics of myself and my husband. However, both my children were in fact diagnosed with the disease. It was shocking to say the least, but yet I felt that it immediately encouraged me to stay as positive about my disease because it was my children’s disease as well. And I did not want them to have any negativity associated with CF.
Cystic Fibrosis presents itself so differently in different patients. Can you share your biggest hurtle with CF?
My digestive system. Even with clean eating and digestive enzymes, I struggle with DIOS episodes, lack of absorption, and low body weight. And because of that, I can be weak at times. I also have chronic pancreatitis which can cause pain many days and my blood sugar to be erratic
What are your children's biggest hurtles when it comes to Cystic Fibrosis?
We are very blessed that at the moment my children are only exhibiting mild CF symptoms. My son is very strong. He runs almost daily to keep lung function up. However, he does struggle with intestinal issues as well. He has had several “back-ups” as they are referred to and needs to be diligent with laxatives and enzymes.
My daughter is very tiny, like myself and struggles with her pancreatic function as well. She is prone to upper respiratory infections. We have had a good 6 months, but the 6 months prior to that, she had several cases of pneumonia.
Being a mother, regardless of health status, can be challenging at times. We all know CF can be extremely demanding and challenging as well. Does CF ever get in the way of the mother you want to be?
YES! There are times I am too sick to go into the schools for this or that for my children. There are times I am too sick to get out of bed and I hate not being present for my children. My own care takes a lot of time and that is time I have to schedule in my day and away from other things.
What advice would you give and adult that is diagnosed with Cystic Fibrosis.
To not let this disease define them. CF will become part of your life, but it does not need to be your whole life or define you negatively.
What advice would you give to a parent whose child recently received a CF diagnosis?
I would tell them to raise their child to be responsible for their disease, but to raise them with HOPE. Allow them to be who they want to be. CF is only one fact about them, it is NOT who they are!
You and I have very similar philosophies when it comes to food: whole foods, healthy sources of fat, and limited junk or processed foods. This kind of eating can be unusual among CF most CF patients who are told to get as much fat as possible regardless of the source. What made you chose this route when deciding what foods to put into your body?
It was as simple as trial and error. The bottom line is that I feel better when I eat clean foods. My weight stays more stable when my fat and calories come from natural sources. When I stray from clean eating, I suffer with pain and weight loss. I also believe that people with CF need to plan to live a long life (we are making strides that is a reality now) and I believe you should protect your heart, etc when caring for your body and meeting your CF needs
Please tell us about your website, http://amindfullmom.com/, where you share tons of amazing recipes.
A Mind “Full” Mom is a place where I share real recipes made from real foods that meet the needs of real families on real budgets. That breaks down to me sharing recipes that are family-approved, easy to pull off and won’t break the bank. I also share ways to be intentional with life and to not let the craziness of this world impact the memories you make with your family. And of course I share encouragement for staying positive when living with a chronic disease.
To read the stories of ten other women with CF and their journeys with CF and pregnancy/motherhood please click here.
If you are a CF mother (though adoption, step children, surrogacy, fostering) or have CF and are pregnant and want to share your story e-mail me at inhalinghopecf(at)gmail.com
Being a mother, regardless of health status, can be challenging at times. We all know CF can be extremely demanding and challenging as well. Does CF ever get in the way of the mother you want to be?
YES! There are times I am too sick to go into the schools for this or that for my children. There are times I am too sick to get out of bed and I hate not being present for my children. My own care takes a lot of time and that is time I have to schedule in my day and away from other things.
What advice would you give and adult that is diagnosed with Cystic Fibrosis.
To not let this disease define them. CF will become part of your life, but it does not need to be your whole life or define you negatively.
What advice would you give to a parent whose child recently received a CF diagnosis?
I would tell them to raise their child to be responsible for their disease, but to raise them with HOPE. Allow them to be who they want to be. CF is only one fact about them, it is NOT who they are!
You and I have very similar philosophies when it comes to food: whole foods, healthy sources of fat, and limited junk or processed foods. This kind of eating can be unusual among CF most CF patients who are told to get as much fat as possible regardless of the source. What made you chose this route when deciding what foods to put into your body?
It was as simple as trial and error. The bottom line is that I feel better when I eat clean foods. My weight stays more stable when my fat and calories come from natural sources. When I stray from clean eating, I suffer with pain and weight loss. I also believe that people with CF need to plan to live a long life (we are making strides that is a reality now) and I believe you should protect your heart, etc when caring for your body and meeting your CF needs
Please tell us about your website, http://amindfullmom.com/, where you share tons of amazing recipes.
A Mind “Full” Mom is a place where I share real recipes made from real foods that meet the needs of real families on real budgets. That breaks down to me sharing recipes that are family-approved, easy to pull off and won’t break the bank. I also share ways to be intentional with life and to not let the craziness of this world impact the memories you make with your family. And of course I share encouragement for staying positive when living with a chronic disease.
To read the stories of ten other women with CF and their journeys with CF and pregnancy/motherhood please click here.
If you are a CF mother (though adoption, step children, surrogacy, fostering) or have CF and are pregnant and want to share your story e-mail me at inhalinghopecf(at)gmail.com
No comments:
Post a Comment