My Journey With Cystic Fibrosis Metabolic Syndrome: What is CRMS and how is cystic fibrosis metabolic syndrome diagnosed?
Hello my precious readers!
To those of you who have been faithfully reading my site these past few months, thank you for your support and your patience as I am honing my craft.
For those of you who are new around here, welcome! I hope you pull up a chair, pour a cup of coffee, and stay awhile.
I want to take a moment and step back and let you in on my personal journey that has led me to become “A Mind ‘Full’ Mom.”
For the majority of my life, I struggled with a mystery illness.
I was tiny, despite a hefty appetitie. And not the kind of tiny that people should be envious of, but so tiny, I was constantly asked if I was actually eating or could I perhaps be bulimic.
My stomach was constantly hurting and I never knew when food would sit well with me or make me feel ill.
My digestive system was a mess, so much so, many doctors swore I had Crohn’s disease or Celiac disease, but those diagnoses were never given because proof was never found internally, despite test after test.
I suffered from many other mysterious symptoms that I never suspected were connected to my digestive issues such as dry skin, dry mouth, chronic sinus infections and sinus headaches.
There were days I felt like my whole body was falling apart.
After years of health struggles and seeing many specialists across the country, I believe God finally led me to the right doctors who were able to put the strange pieces of my puzzle together. I was diagnosed with a form of Cystic Fibrosis, known as Cystic Fibrosis Metabolic Syndrome (CRMS—or sometimes called Mild Cystic Fibrosis).
CRMS is not well documented or understood. Some patients exhibit issues in no organs, while others exhibit symptoms in lungs or digestive system or sinuses or all of the above. At this moment I have no issues in my lungs.
That will hopefully continue to be the case, but truthfully because little is known about this condition, no guarantees can be made.
**Since writing this post in 2014, my diagnosis was changed to full blown Cystic Fibrosis after a severe lung infection–you can read more about that here.
Unfortunately, after my diagnosis, both my children were tested as well and both revealed to have Cystic Fibrosis Metabolic Syndrome as well.
I was saddened but not shocked. They were both exceptionally small for their ages and had exhibited many digestive issues as well.
We were all prescribed pancreatic enzymes which help break our food down so that we can better digest and absorb nutrients. We are monitored closely for many conditions, including diabetes, vitamin deficiency, bone loss, and lung infections.
I have found that I need to strive to get my calories from healthy whole foods and natural fat sources. My body and my children’s bodies have been able to absorb and respond positively to whole foods much more so than processed foods. A junk food binge can set me back weeks and cause me to lose weight that is vital to my health. Junk food also weakens my immune system and puts me at risk for infections I cannot afford to fight off.
My struggles cause me to have no choice but to “mindful” of all I do and eat.
However, this has not been a curse. It causes me to be intentional with my life and my diet.
Because I have put hours and hours into researching how to make healthy, whole foods (on a budget none the less) and have tried every elimination diet out there on my quest to find answers, I know my journey may allow others to gain benefit for their own health as I share my “mind full” of ideas for you and your family.
I promise you change of any sort is hard. However, the pay off that ANYBODY can feel by being more intentional with what they eat is huge and worth striving to obtain. I hope I can help inspire you to reach your healthy goals in whatever you face!
* I am going to take the next week off from blogging. I am having surgery while this post is being published, and want to extend myself some period of time to properly heal. I look forward to chatting with you all soon.