I’m curious how many single love seekers out there divulge their inner most details of their health journeys on a first date? I’ve struggled with this. For me, its a first date no- no. I picture the man leaving, possibly thinking it all sounds like too much drama. But what about after 3, 4, or even 6 dates? I feel that my medical history is a private thing, though ironically I do tweet about it,blog, and Facebook about it, my “story” is splattered everywhere. But my story is meant to encourage others, to awaken to other possibilities and approaches, not for someone that is somewhat a stranger.
Though I no longer struggle with symptoms, I still eat a certain way, gluten-free, raw, and avoid beef and dairy. At times I am questioned why. I never open up right then and there, that’s for the privileged individual. Why go into the the details, the hospitalizations, the medications, the fear, the medi-flight from one hospital to another. No. I can easily share with my readers, others who have been there too, who know the pain, who have felt it. I mean I am still brought to tears when I go into full detail.
My last boyfriend was there while I went through the diagnosis and beyond. He was there for me 100%. Not sure how I could have dealt with all of it without him. We have since broken up when I moved away. So now on the single circuit, I prefer to keep it under wraps until the relationship starts to become a little more serious.
What about you? How do you handle it? I’d love your comments!
I was a guest blogger at Crazy Sexy Life: Here’s my story.
The Lupus and Gluten Connection
Today I am healthy, vibrant and pain free, but it wasn’t always this way. A few years ago, I became afflicted with intense, severe muscle pain and joint swelling, leading to hospitalization. It wasn’t until I discovered I had a severe gluten intolerance that I was able to turn it all around.
My symptoms began with random traveling joint pain. Then more joints started to ache. My feet were so swollen that my shoes would barely fit. Symptoms quickly worsened: bloody urine, heart palpitations and shortness of breath. Off I went to the emergency room. After being evaluated, I needed to be monitored, but there were no beds available for admission. Next stop, mediflight to another hospital in another state. I was diagnosed with lupus nephritis with multi-organ involvement.
Three hospitals later and on a slew of medications, I retreated with family as my body required 24-hour care. I needed assistance getting out of bed, washing my hair and just walking. I had so much brain fog, depression rapidly set in. What was happening to my body? Thoughts of taking my life came during my worst days as I lay in bed, sobbing alone. Days and weeks passed, and I pondered what had happened to this healthy, organic food eating, juicing, supplement-taking, bottled water-drinking body of mine.
I realized that my joints would scream after most meals. I requested a gene test for celiac disease from my specialist. She said, “Don’t even waste your money!” I found the test online and ordered it. Lo and behold, I had two gluten sensitive genes, one from each parent. It was at that instant that I became gluten free and within days my brain fog started to clear up, and the joint and muscle pain began to resolve. That was my salvation and the birth of a gluten-free fanatic.
As I have come to realize this journey as my gift, my mission is to spread awareness of the link between gluten and lupus or possibly other autoimmune disorders. I strongly acknowledge the potency of nutritional food choices; it literally saved my life. I now share my story with lupus support groups in New York City.
Today as a nurse practitioner and celiac educator, I focus on testing for gluten intolerance and celiac disease, as well as treat and nurture patients with celiac disease from the afflictions gluten can cause, especially multiple vitamin deficiencies. If you have joint or muscle pain, infertility issues, anemia, brain fog, irritable bowel syndrome, thyroid disorder, osteoporosis, gastrointestinal or an autoimmune disorder, get tested (preferably gene tested) for celiac disease. It can ultimately stop the rapid progression of this rising autoimmune epidemic in women.
Today I am a healthy and a vibrant gluten-free cook and foodie working on my first gluten-free cookbook. I empower women, especially those who have suffered a chronic illness, to live beyond their diagnosis and to live a full out and fabulous life!
Margaret A. Romero is a board-certified nurse practitioner specializing in women’s health, autoimmune disorders, and integrative medicine. She has a private practice in New York City.
So this was my most popular question of the week, “ What can I do to get over the fatigue?”. Very common in individuals with an autoimmune disorder.
Are you dragging all day at work? Do you wake up exhausted? Those days you can’t simply get out of bed.
After being diagnosed about 5 years ago with lupus nephritis, I no longer suffer from fatigue. I used to have severe insomnia from the high doses of prednisone. Today I sleep pretty well, about 8-9 hours a night, no interruptions.
Here are a few ways to combat it:
Are you waking up multiple times a night? Why? From pred, or to use the bathroom? If its to use bathroom, stop drinking by 8pm. Are you drinking coffee after 4pm? This is a big no-no, especially since caffeine is a diuretic and may get you all wired up. So no liquids a few hours before bed, especially caffeine, even chocolate.
Take a B-complex supplement. Most of us are not taking in enough from our foods, do you eat enough greens and fruits? If not, you may be deficient. B vitamins help out our adrenals which take a hit with all that prednisone the majority of us have been on. The B’s give us that burst of energy and if our adrenals are happy, so are we!
Check out your thyroid and iron levels. There are several different anemias out there, not only iron deficiency. You can have a folate or B12 vitamin deficiency. Ask your doctor to check these at your next blood draw. You may need weekly B12 injections.
When do you experience the most fatigue, when you wake up? After a meal? Mid afternoon? Is it after a certain food? If its all the time, have your doc check your blood levels. If you get drowsy after a meal, you may have a food allergy. Keep a food diary and keep track of which food you just ate.
Keep submitting your Q’s to me, here or on twitter at GlutenFreeHeals. See you next week.
I had so many questions and praise for my recipe today, I’d like to share it.
This recipe comes from Matthew Kenney’s Everyday Raw Desserts and I used the pudding as breakfast with organic berries.
1 cup cashews
2 cups water
1/2 honey
1 tbsp cinnamon
1/4 tsp nutmeg
1/4 tsp ginger
1 tsp vanilla extract
1/4 tsp salt
1/2 cup chia seeds
Blend all ingredients except the chia seeds to make the cashew creme and pour over the chia seeds. Allow up to 2 hrs for the consistency to thicken. Enjoy!
This is an incredible video showing a physician who was able to combat her debilitating MS simply by changing her food options! It has been my personal journey as well. For me living gluten free saved my life! What changes have you made for your body today?
As many of you may know, I was diagnosed with lupus nephritis 5 years ago. Through the tears and severe pain early on, along with the impending prognosis of “In 5 years you will most likely be on the kidney transplant list”, from my specialist at the time( that was 5 years ago), I have managed my symptoms which have allowed me to live a full and vibrant life. It was certainly a rocky time for me but today I do not suffer from fatigue, joint or muscle pain, or hair thinning.
At first, to be honest, it was so difficult to come to grips with a health care provider who had fallen into such a critical and devastating illness. Lupus nephritis with multi-organ involvement. I did not want to share it with anyone except my immediate family. I thought, ” Where did I fail, how could this happen to me, I’m a healthy, organic eater, I exercise, and so on and so on.
Why would anyone want to be my patient, look at me. Let’s not mention the depression and intense sadness at my supposed prognosis, my 30 lb weight gain from the fluid retention due to my kidneys, the whopping doses of prednisone, hair thinning, and moon face. I couldn’t even bare to look at myself in the mirror, I was unrecognizable.
I probably should have gone to therapy. But I didn’t. As soon as my foggy brain and pain resolved from becoming gluten free, I delved very deeply into the healing of my body using all the tools I learned as an integrative practitioner. I experimented with various supplements, vitamins, functional testing, you name it, I was my own science lab. I have never looked back nor have I looked or felt better.
My life today is full, I work out 4 days a week, lost all that weight and more, and barely have to maintain my weight today due to my diet. This consists of not only of being gluten free but I also have tested myself for other various food allergies that can silently or not so silently cause inflammation . My goal was to protect my kidneys, decrease all inflammation and eat whole, raw foods along with juicing and green smoothies in the morning.
Now, I won’t lie, it is not easy to think about every single thing that goes into my mouth, making sure I incorporated self care into my daily regimen, and trying not to slack in anything. That’s a huge request, but my body wouldn’t allow anything else.
Initially lupus was the enemy, but today I see it as my gift. I have the ability, desire, and on a mission to help others who are suffering.
If you suffer from lupus now, are you willing to do what it takes, whatever it takes to stay off that kidney transplant list?To be pain free? Tired of crying alone at night because of the pain?
How willing are you?
For me, it was a matter of life or death. Laughter or depression. Aliveness or lifeless.
As I finally rise up out of my mild hibernation (I’m not a cold weathered girl), I emerge with the desire to re-do my eating habits and finally start doing some things I have been soo resisting! I tend to just slightly overdo it with the indulgences in the winter!
As we head into the winter season, I have been contemplated my next few months. But here’s a recap of what’s been happening the past few weeks:
Appetite for Awareness in Philly. This amazing event featured food and drinks from various gluten free companies and restaurants in the area. I left fed, satisfied, and completely in awe of the crowds that flooded the concession stands.
Blog Talk Radio Interview: What is Lupus and do you Know Anyone That Has It, listen to the interview as I speak on the link between celiac disease and lupus. Listen Here
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