Things are getting pretty personal today – I’M COMING OUT!

Today is World Health Day, an international day of recognition, designated by the World Health Organization (WHO). This year, the organization is focusing on food and nutrition as a means to increase health. Here is a great article to start off your quest to increase your health through food and nutrition:

wholesale-nutrition--supplements-and-your-skin_16000966_800708325_0_0_14049651_600-600x350The Health Benefits of Popular Foods

My friends @WeGoHealth have asked their health activist writers to write about how our diagnosis has affected our diet and nutrition. Here’s where the rubber meets the road for me. For almost two years now, I’ve been calling on medical device companies to tell the truth; doctors to be held accountable for their actions to implant mesh; to be honest with the people they are supposed to be serving; to say who they are and mean what they say. I also regularly call on public officials and other individuals to be the same person in public as they are in private. I often call upon people to stand by their word(s) and to be real.

I wouldn’t be a very good health activist if I did not take my own advice, and hold myself to the same standards as I hold others.

I have to do this with a little humor, or I won’t do it at all, so queue the Diana Ross background music:

I can’t write truthfully today without sharing with you my own recent diagnoses and how I’ve had to drastically change my life, including my diet and nutrition, in order to take hold of my health in the ways I can control. It all started around April of last year, though I believe I was experiencing symptoms that I didn’t understand or recognize as early as August of 2012. In April of last year, I started to experience a bone-weary, can’t-lift-your-head, suck-the-life-out-of-ya fatigue that I have never experienced. I tried to go on with my very fast-paced life as normal, but it became increasingly difficult to will myself to overcome this fatigue. I began having a day or two here and there where I simply could not lift myself from the bed. My hair was so dry that it barely needed washing once/week. It was coming out in clumps. My digestion was an issue too. I could seldom go out to eat, and if I did I walked somewhere close with my husband and ultimately, 9/10 times, I had to leave in the middle of the meal because I was so sick.

I thought it was stress.

It wasn’t normal fatigue, but then again, my life wasn’t exactly normal. My mother was/is so severely injured and so severely ill from mesh that it was taking every ounce of energy I had to fight with her and for her. As I’ve said many times, I believe mesh injury is a family injury, and subsequently a family illness. One cannot remove the mother, our Sun, from our Solar System without big, big, catastrophic fallout for the entire family. Again, for these reasons and more, I thought my weariness was simple stress, and I tried to go on as best I could, but I wasn’t able to be “at the top of my game.” I wasn’t able to complete a busy day in the way I have always been able. And I felt more pressure than I ever had because I was advocating for my mother, for all mesh injured. I was staring a foundation, The Mesh Warrior Foundation for the injured (www.tmwfoundation.org) and I didn’t want to slow down, didn’t want to stop making strides to help. TMW_line_art_color_logo

It was during this period of time, before I knew what was causing my illness, that I felt the sting of rejection from so many people; close friends, fellow advocates, even some family members who I thought would understand most. The most hurtful and unkind words were said to me during this time. One friend said, “I just don’t think I can handle a day in your life. I don’t think I’ll be able to be part of your ‘support system’ during this time.” Wow. Stunned. If one day in my life is a little tough on you, HOW DO YOU THINK EVERY DAY IS FOR ME? But, no matter, friend of twelve years or not, I needed to know she felt this way, for that is not someone who belongs in my ‘support network’ indeed.

Another person, a patient advocate as well, said “You’ve become unreliable, and I don’t want you to damage my reputation. I’ve taken a long time to make these connections.” Oh, ok. I thought patient advocates were people who advocated for PATIENTS, not invisible people they’ve not known or met. But ok, again, good to know. I was mistaken. I WAS NEVER important to these people. What I COULD DO FOR THEM was important to these people. And plain and simple, I could no longer “do” for them. I could barely do for myself. They didn’t care to be part of the solution, so it seemed to be just as well. I’ve heard stories like this from many in the mesh-injured community, but I now was experiencing it myself. I now have knowledge and personal experience to lend to my cause. A family member ridiculed me for not being able to get out of bed ONE morning in a series of many, many busy mornings and days. Others were telling me they didn’t like my way of advocating for patients; that I wasn’t helping in the right way; that I wasn’t helping them personally; that I wasn’t helping enough overall; that I was helping too much. It was madness. VERY few friends, associates and family members loved me enough to stand by me and help me figure out what was causing my illness and my decreased level of functioning, which has been very, very high for most of my adult life- some would even say my standards for myself were too high. I was beginning to have to sacrifice everything I loved to do: jogging, yoga, eating out, going to conferences, working with others, hanging out with friends, staying awake past 9pm, getting up with ease, charging on each day – motivated by love to help the mesh injured community. I was losing what has made me, “me.” I was losing friends, activities, relationships with some in my family. I was losing everything I held dear, and I didn’t know why. My illness is a gift, though I couldn’t see it at the time. It separated the wheat from the chaff for me. I didn’t have to do it; my illness made it impossible for me to maintain stressful relationships or relationships that were based on what I could do instead of WHO I AM.

I could barely move my limbs or have enough energy to speak or respond to my husband, and by May of 2014, he had to take me to the ER because I was loosely holding on to consciousness. My blood glucose was below 20, a number at which most people fall into a coma. The hospital released me two days later, with no diagnosis other than hypoglycemia and or depression. To cope with the fatigue, I began drawing. I’m not Monet, but I didn’t know I could draw anything other than possibly a stick figure. Drawing and painting has helped me cope. My husband has been so supportive of this new endeavor. In fact, he’s been supportive of any thing that has healed me, even just a little bit, bringing me back to him with every inch closer to health.

Devastated that I could not observe the Mexican holiday, Dia de Los Muertos, I drew my own "La Catrina," the iconic figure of the day.

Devastated that I could not observe the Mexican holiday, Dia de Los Muertos, I drew my own “La Catrina,” the iconic figure of the day. With no art supplies, I used a pencil, a black sharpie and my make-up. Ha!

My first pastel drawing, of a hibiscus flower I had seen.

My first pastel drawing, of a hibiscus flower I had seen.

anvils

The only way I could describe the level of fatigue was to say, “Every single cell in my body aches and is tired, from my eyelids to the muscles in my upper arms, to my legs to my toenails. I feel like I have tiny little anvils hanging from every single cell.” If I could find a doctor who would even listen, “tiny little anvils” doesn’t have a diagnosis or billing code. I was visiting endocrinologist after endocrinologist who DID NOT LISTEN and sent me to have blood work done for diabetes. I didn’t have high sugar, I had dangerously LOW blood sugar, consistent and chronic hypoglycemia. To see a three-digit number on a glucosometer was a RARE occurrence for me. Lack of blood sugar regulation was the only clue I had at this point, and hypoglycemia itself runs in my family. As expected, all testing for diabetes came back saying I not only did not have diabetes, but I had a DECREASED likelihood for diabetes. I would ask them to check my thyroid and do a full thyroid panel and they would just tell me, “I already checked your TSH. You are fine.” They would not honor my requests to do a full thyroid panel. They simply would not do it. Month after month, my health declined and doctors would not listen to my symptoms or me. When I began to have lab results that I could present and take with me to the next doctor, hoping he/she would listen, my hope renewed. But it was a fleeting hope, because I heard everything from “the labs are wrong” (WHAT?!) to, “Let’s check you again for diabetes because in rare cases, pre-diabetics can by hypoglycemic.” (WHAT AGAIN?!) Why are we looking for rare causes at the beginning of the diagnosis process?

Mesh news Desk 185 wideI felt like I was on the same merry-go-round of horror that I described when I wrote this article for Mesh News Desk in 2013 about seeking out help with all of the health problems my mother was suffering, which we now know are caused by the mesh implant.

One doctor even lied to me, telling me she could speak Spanish without knowing that I am fluent. When she realized she was found out, she back peddled saying that it was actually a nurse who was fluent. “Oh really, an LVN or RN,” I said. Another lie, “An M.A.,” she answered. I guess she thought I didn’t know the difference between a medical assistant and a nurse. If you are someone who lies about small things, you will eventually lie about big things, and I don’t, no I SHOULDN’T, trust you with my health.

I thought, I’ve gotten better health care in MEXICO! Wait, there’s an idea. Maybe that’s where I need to go to find out what’s going on with my health.

I’m fortunate that my husband’s family has a very long history of living in Mexico. His grandparents retired there in the 60s and we still live in the community where his grandmother lived until she died at the age of 93, a wonderful community where we’ve received health care for minor emergencies when traveling. My health was deteriorating so quickly that my husband asked for the ability to work from home for a few months while he took care of me and helped me seek medical attention.

One car, two people, three dogs and off to Mexico we drove. To make an even longer story short, it wasn’t until we met this doctor and gentleman, Mr. Marco Alvarez, that we would begin to piece together a diagnosis of

A fine man, Dr. Marco Alvarez

A fine man, Dr. Marco Alvarez

Hashimoto’s Thyroiditis, an autoimmune disorder, in which your own body destroys your thyroid glad. He performed an ultrasound on my thyroid, a butterfly-shaped gland in the neck. The results showed scaring and evidence of progressive disease. He recommended an antibodies test to confirm his suspicions. With the recommendation of Dr. Alvarez, I went to an endocrinologist in Mexico, who finally did a full thyroid panel, including a TPO Antibody test, and the suspected diagnosis was confirmed. It was necessary for me to leave the care of two unhelpful endocrinologists to pursue my health with Dr. Alvarez’s help.

Based on my first set of labs, my primary care physician in Mexico suggested an

Dr. Jorge Garcia D'La Rosa

Dr. Jorge Garcia D’La Rosa

MRI to scan for abnormalities in my pituitary gland. He is another true gentleman and doctor, who actually cared about me and wanted, himself, to know how to help restore my health. I was also diagnosed with hypopituitarism, of unknown origin as of yet. He saw a very sick person, a lack of health.

Both of these men are medical heroes to me, because each man simply followed the science. No drug reps pushing “treatments” for symptoms only, no dollar signs in their eyes as they see a diagnosis of diabetes, needing long term care, lots more visits and commensurate copays. Doctors trained in Mexico are not of the same mind set as most doctors in America. Healing is their gift, their family’s mission, their father’s work, their family pride. They often feel as if they were chosen or destined to become a doctor, and they take their roles as healer, health companion, scientist and patient advocate very seriously. If they have not or cannot help you, often they feel they have not used their god-given talents to heal and help. They will work beyond what the typical American doctor would do to care for you. They are not afraid to touch their patients; they are compassionate and dutiful. They are direct. There is no health insurance company between you and the doctor. In fact, there is very little administrative assistance. In most cases, you hand your cash to the doctor himself. There is no “appointment turn time” or “15 minute window.” When we began asking, “How much time have you allotted for our visit?” they seemed confused and responded, “As much time as it takes.” Often doctors will not take payment if they have not been of service to you, or in the case of Dr. Alvarez, when I went back to him for another appointment with questions, he sat with me, helped me, and did not charge me because he saw it as an extension of his original service to me. I was floored. I went back several days later and gave him a gift, because THAT APPOINTMENT, THAT CONVERSATION with him was the turning point. He was honest with me, told me how to get help, and most of all he LISTENED to me. He asked me to tell him my symptoms and how I was feeling, and he’s a radiologist! His service to me was the turning point in my health. It was the first REAL medical care I got, and as a result, I was able to begin to regain my health. Both Dr. Alvarez and Dr. d’La Rosa focused on achieving health, not simply efforts to eliminate symptoms, and because these two men did that, I am getting well. I have been educated and accepted by communities like Facebook’s Hypothyroid Mom, Dana Trintini and Janie M. Bowthorpe at www.stopthethyroidmadness.com.

thyroid changeOther organizations like Thyroid Change have also helped me to know that research is being done, and I am among many who suffer from Hashimoto’s specifically, a disease process wholly different than hypothyroidism.

With education and a supportive community, I brought all my lab results back to America, and I began seeking out the best doctor for help. For goodness sakes, when I came back, I went to a PCP to get a referral, and before I knew it, I was ushered into a room and entered into a sleep study without even knowing that’s what was happening! Welcome to America, the land of LACK OF INFORMED CONSENT!

When my nurse put me in another room, after I’d seen the doctor and said, “They’ll be right in,” I asked, “Who is they?”

She said “I don’t know.”

And I said, “Well, then who does? Is this a part of my treatment and the reason for my visit today?”

Again she said, “I don’t know. I’ll find out.”

She came back within the minute and said, “You’re free to go.” Oh really, I’m a FREE PERSON?

In my first doctor’s visit upon returning, I was whisked off into a sleep study where my health information was being shared with the “they!” Had I not been an educated patient, I would have thought it was part of my visit for that day! Shameful!

I-Love-You-Bed---Funny-Cats-PicturesI researched integrative medicine and found a highly recommended doctor. My integrative physician ordered more tests, and is getting closer to the origin of the hypopituitarism and has started me on a treatment plan for hypothyroidism. After a month or so, I’m starting to feel a renewed sense of health, more energy, and hope that my bed will not be my best friend for another year and that I can keep fighting for you all, my inspiration, my family of chance (FOC), you in the mesh injured community who have become my friends and my reason to continue fighting, for my mother, for you, for myself, for all patients, because I now know, even more personally, just how broken our healthcare system is. It’s unacceptable, and I can have a voice for change, so I must. I had begun taking a stack of 12 pictures to my appointments, praying that the photos of my degeneration over time would tell the story that I couldn’t seem to tell. Trust me, these pictures are not flattering, but they do tell a story.

A picture I took while on a skiing trip to show my mom that I was wearing the scarf she gave me. It's the only full-body shot I have from that time.

December 2013 – A picture I took while on a skiing trip to show my mom that I was wearing the scarf she gave me. It’s the only full-body shot I have from that time.

As far as lifestyle habits and nutrition changes, you can read my most significant changes in a blog I wrote a few days ago: My 5 Best & Worst Health Hygiene Habits! The most significant change I’ve made is believing that I AM WORTH BETTER than what’s being offered to me, which is pharmaceutical care or no care. I’ve always known that was happening to YOU, but I’ve only recently been able to see myself in the same light.

Thank you for teaching me. Without this mesh-injured community, whom I call my family of chance, I would not be the same person. I wish I could name each of you here. THANK YOU ALL. THANK YOU FOR SUPPORTING ME. THANK YOU FOR STICKING WITH ME AND KNOWING THE TRUE ME.

My life since March of 2011, when I learned just how sick my mother was, has been a 180, a completely different journey than I ever thought would be part of my story or my family’s story. But, I am grateful still. There are so many bright examples of fine human beings, that but for the darkness, could never have shined so bright.

Thank you for giving of your time to read about me today. It means more to me than you will ever know.

God bless you all. To OUR health!

Aaron

6 responses

  1. Pingback: #HAWMC Day 4: Dear Me | The Mesh Warrior ℠

  2. Pingback: Day 1 of WeGo Health’s 2016 Writer’s Challenge! #HAWMC | The Mesh Warrior ℠

    • Hi Kim! I’m glad you’re reading. I’m confident with my diagnosis and my physician. We both know my history of antibiotic usage as well as my family and genetic history. Hopefully your comment will be helpful to many who read! Again, great to have you reading the blog and commenting!

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  3. What a phenomenal post. I’m so sorry to hear that you had to go through all of that, and glad that you were finally able to get a correct diagnosis – though it’s sad that you had to go to another country to do it. The degradation of the medical system in the U.S. sickens me (no pun intended, but I guess for people with chronic illness that’s literally and figuratively). The online support community is wonderful, and sometimes they are the only ones that understand, when even your IRL “friends” can’t.

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    • Hi Maya. Thank you so much for your kind words. It means so much to me, and you are exactly right. The degradation of our medical system, of our country really, has made it almost impossible to get the care we pay for… the care we need. The only thing I can do is choose not to give them my money, choose not to play the game when I can. I will not comply with an opportunistic system. I will not comply.
      Again, thank you for taking the time to read.

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