AHHHH...RELIEF!!! OMG!

How is everyone pooping these days?

I guess I shouldn't start there. Let's start with background so those of you who are tuning in late will have some kind of context. 

I have Hashimoto's Thyroiditis, an autoimmune disease that causes your body to attack the thyroid gland causing all kinds of misery. Couple that with MCS and thyroid prescriptions make me incredibly ill with side effects that match if not exceed the symptoms of Hashimoto's. I've spent a good ten years managing this illness with diet and lifestyle only. For the most part, it's worked out really well. However, I've read too often untreated Hashimoto's can cause significant kidney, cardiovascular and vascular problems. I've been expecting death any day now. It's not a good mindset.

So...about four years ago my colon abruptly stopped working. I've always believed a properly working colon is the foundation of good health. I had never in my life had any kind of constipation, let alone what doctors love to call "chronic constipation" so this was shocking. And scary. The pain landed me in the local emergency room and then over the course of the next three months I saw another fifteen different health care providers: conventional MDs, naturopaths, functional medicine doctors, nurse practitioners and one colonic technician as I desperately searched for a solution. Over the next FOUR years I added four more health care providers to the list and I subjected myself to thousands of dollars worth of testing hoping to get answers to why this was happening. And for my time, money, and trouble, I received NO answers, NO solutions, NO help.

I tried every home remedy, dietary remedy, and nearly every over-the-counter remedy with no success. I even tried very expensive colonics every couple days mostly to relief the pain, but I really hoped it would jump start my colon into working again. My colon would not work. I asked a friend, "Where does all the ruffage go if absolutely nothing comes out the other end?? After all, I am eating!" Well, until I started a liquid diet out of desperation. She didn't know.

I did read on a few websites that claimed the colons of some people never work. Nothing works. They end up with a colostomy bag after too much chronic constipation damage. Oh great....

Several people suggested I try Miralax. I had been afraid of Miralax. It says right on the label, "Do not use if you are allergic to polyethylene glycol." 

I had no idea what polyethylene glycol was, but I'm chemically sensitive and "allergic" to every medication known to womankind so this did not give me comfort. (Note: Polyethylene glycol is the reason some have life-threatening anaphylactic reactions to the COVID vaccines.) Still, I was desperate. I threw all caution to the wind and tried it as a last resort. It worked! Besides anaphylactic shock, Miralax is known to cause gastrointestinal problems including stomach ulcers, kidney damage, and OCD, aggression and psychotic/personality changes in children. I was convinced Miralax would kill me, but what choice did I have? Between the Hashimoto's and the Miralax, I was doomed.

Constipation is a common Hashimoto's symptom. After a year of intermittent shutdowns and startups, my colon finally found a schedule of sorts: it would stop working in the fall when the weather cooled (around October) and miraculously start up again in the spring (around March). This is typical of thyroid function anyway...in the winter months during colder weather the thyroid slows down even for people who have no thyroid issues. This is why so many become slightly lethargic, eat too much, pack on the weight, and basically hibernate. Hmmm...so is my non-working colon just another symptom of Hashimoto's? How do I get my thyroid functioning without poisoning myself?

I presented my theories to many of those health care providers. Most just looked at me like deer caught in headlights not knowing what to do with a patient who needs drugs, but can't take them. Some treated me like everything I said was a lie or argued with me insinuating it was all in my head. No, you couldn't possibly have problems with thyroid medications, and no, Miralax is very inert and healthy after all it's given to children as well as quadriplegics and paraplegics who have no colon function. One medical doctor with an office lined with credentials told me he didn't know if constipation was a symptom of thyroid disease. Morons have taken over the medical system yet I am expected to pay these people for an appointment! Orange fucking cones.

Faced with the incompetent American health care system, I realized I had to figure this out myself because no one was going to help me. I went to an acupuncturist. Maybe he can jumpstart the thyroid by poking needles in the nerves? The second treatment made me violently ill for two weeks as if it triggered an autoimmune attack. The fact that it triggered an attack indicated it did something, but it was too much and too much money if I wanted to maintain the treatment and experiment. Besides my colon was not amused. It refused to do any jumping.

In the meantime, my stomach was ripping with pain, my back hurt right around the kidney area, and my blood labs showed I was at stage three kidney disease...in March. In September after six months not taking Miralax, my kidneys went back to looking fine. Miralax was killing me. I was desperate now. I was depressed and anxious. I was afraid. If nothing works, this was definitely going to kill me!

I decided to try one more idea for a thyroid prescription. If I could control the amount of drug I take, maybe I could tolerate a little at a time. All I need is enough to make up for thyroid drop during the cold winter months. Maybe that would do the trick? I'll need a compounded prescription with no fillers, no additives, no flavors, no scents. Topical drops for my skin. Then I had to find a health care provider who would prescribe compounded drugs. This was nearly impossible. Most of them argued with me saying I wouldn't get enough absorption and ignored me when I said, "That's the point [ORANGE CONE!]." (See my post on orange cones.) Even one of the compounding pharmacists argued this point! Orange cones are everywhere.

I finally found a naturopath who claimed she had compounding pharmaceutical experience. Bottom line, she was willing to prescribe my idea, or so I thought. First, it took six weeks to get an appointment with her. Second, it took her seven more weeks to call it in to the pharmacy. She doesn't understand I'm on a timeline and need the drug before the weather cools. Third, she failed miserably at listening to me and prescribed it incorrectly because although she might have minor experience with compounding drugs, she has absolutely no experience with MCS. Fourth, the pharmacy mixes it wrong adding fillers I can't tolerate and even using the wrong dosage!! Really? After a dozen conversations they still get it wrong???!! Finally, after four months of struggling at every turn, I get the correct prescription. I mark on my calendar six weeks because that's how long it takes for thyroid drugs to affect one's thyroid levels. 

I started with one drop of Levothyroxine under the arm every three days because it's usually the second and third day when I get sick. The first week I start taking it, my colon STOPPED working! Fall is here! The weather cooled. UGH! I was disappointed it took too long to get the prescription, but I hoped continued dosing would still my raise my thyroid levels. I was praying for a miracle. 

In the meantime I unfortunately read more on Miralax about the lawsuits against Bayer Corporation attempting to get Miralax banned in the US or at least labeled correctly. "Do not use if you have kidney disease..." Yes, they boldfaced those words on the container. Great.  Miralax is killing me. This experiment has to work. I am hoping the thyroid hormone supports my already stressed kidneys caused by hypothyroidism and makes my colon miraculously start working so I can stop poisoning myself with this so-called "inert" over-the-counter medication that activist groups are trying to get banned in the US. I can dream can't I?

I also considered if it doesn't work, I think my only option left is to move to Mexico....near the equator. Warm weather year round. My thyroid would love it, but can I get good, organic, wholesome food in Mexico? I hope so. Hasta la vista, baby!

The one drop dosage every third day seemed fine, but I was eager and impatient to get more assimilated in my system. How to increase the dose and still avoid side effects?  I tried two drops every third day and I was hit with severe nausea, dizziness, back and neck pain, headaches, fatigue and depression. I tried one drop every other day, but on the "off" day I was hit with debilitating fatigue causing me to sleep all day. I pulled back and went back to one drop every three days and let my body recover. Then raised it again to 1/2 drop every other day and decided, well hell with the fatigue, take it at night and get tired while sleeping. This seemed to work. Common practice is to take the medication in the morning before one eats as it won't assimilate correctly if food is in the stomach. I wasn't digesting it anyway. I just needed to somehow get it in my system while avoiding the side effects that are debilitating.

At five and a half weeks, MY COLON STARTED WORKING! OMG! 

At first I was in disbelief. Could this be true? I didn't trust it. After four years of hell, have I really discovered the secret? The cure? The remedy no idiotic health care orange cone's brain could comprehend? I very carefully weaned myself off Miralax and waited. My colon kept working. OMG! The more thyroid I take the more motility I get, but it comes with the risk of overdosing side effects. The key is balance!

I AM SO HAPPY AND RELIEVED!! (Pun intended.) 

A week later it stopped. I started doing some cleanses to mitigate the kidney damage (back pain) and that will often slow down a colon. This was probably done too early as I should have waited for the colon to regain a happy normal. I persisted and hoped for a rebalance. I also worked up to two drops every night (10mg.) and after a few days my colon started working.

HOORAY!

OMG! The Perfect Doctor!

Every month I announce to my friend, "I think I have found a doctor!!" And every month I retract my claim and say, "False alarm. Another orange cone."  Most of these doctors I never write about. Sometimes they are nice, but incredibly stupid. Others seem knowledgeable, but arrogant pigs. Some try to bully me into feeling guilty for declining to be an experimental subject for their thoughtless guesswork. Most if not nearly all, unfortunately, just can't fathom I am intolerant of all manner of everything and can't stop hawking their pills. Incessantly! I find this disrespectful. I hate it when they don't listen to me. It drives me nuts when they cop an attitude of condescension and then get irate toward me because I won't comply with their demands. I resent it when they think MY appointment, the time I am BUYING, is actually about them and their ego. In the last four months since my ER visit, I have seen seven doctors. All of them expensive; none of them helpful. This shouldn't be a surprise, but it is very discouraging.

Today I saw my eighth doctor. I actually found her about six months ago before this intestinal nightmare began, but I misunderstood her advertising. She's heavy on "appearance rejuvenation" which I found confusing so I hesitated. Is she a cosmetic surgeon? I wasn't sure. Her marketing seems focused on beauty and if my body is in pain I don't give a rat's ass about appearance. Some of her information states she is most definitely a former-conventional doctor with a very tiny indication she's a functional medicine practitioner. In my constant search for a doctor, her link jumped up once again and I took another look at her website.

She offered a FREE CONSULTATION. Not just a 10 minute meet-greet-and-quickly-street, but 45 MINUTES! Free 45 minutes. What? No way. What is the catch?? I emailed her office manager/receptionist expecting to not hear anything for a day or two and low and behold she responds within the hour. YES...it's free. And it's 45 minutes long!!! Really? Right up to the moment I'm in her office I didn't trust this, but YES, a free first appointment!

While I waited in the sitting room I perused her books and there on the shelf sat all the books of Amy Myers I just read. Wow. Talk about a universal convergence. She had some products on the shelf so I read labels searching for fillers and additives I cannot tolerate, preparing myself for the inevitable rebuttal when this doctor tries to shove the pills down my throat. I came to my freebie appointment armed and dangerous! (I really resent I feel defensive before I've even met a doctor!)

No shoving happened. She was calm almost not friendly, neutral, but not arrogant or unfriendly either. This kind of kept me in check as I'd been feeling pretty hostile toward doctors. She asked about my history, looked over my labs, and told me a little about her philosophy. She talked about genetic mutations and inability of some to tolerate much of anything. She recognizes the challenges involved in treating someone who is so sensitive to everything. As she looked over my labs and information she wasn't judgmental exclaiming horror and disbelief as so many doctors have done. She name-dropped people well-known in the Hashimoto's community. She emphasized her philosophy is DIET FIRST because if you don't fix what you are ingesting, nothing else matters. She talked about her career as a conventional medicine doctor and how disgusted she was with the arrogance of the profession and the model's inability to help patients. And last but not least she explained she does the free first appointments because she wants to make sure the prospective patient is willing to make lifestyle and dietary changes. If not, she doesn't see the point and it's a waste of time for everyone. She expects people to tweak their diet, give up their cigarettes, alcohol, and/or junk food and if they can't she will tell them this won't work for them. Well, I'm already there so it's all go for me. At one point I got tears in my eyes and exclaimed, "You are speaking my language!" I think this is the first time I cried tears of joy at a doctor's office instead of tears of frustration and anger.

I have lots of hope.

UPDATE: Her appointments are very expensive ($245.00 for 15 minutes) and she doesn't do insurance. She requires loads of unnecessary testing whether I have symptoms or not, whether I've had the test done or not. ("Oh, I would prefer using YOUR money and MY lab of preferences. They still showed negative.) At one point she said, "I won't address your weight problem, yet." (Thankfully she had priorities, for now. MY COLON DOESN'T WORK! I DON'T CARE IF I'M FAT! Yes, her health care model is all about appearance.) Last but not least, she has her DOG come to work with her!! In a medical office? That was the last straw for me....

Too many orange cones pretending to be doctors....

Orange Cone Alert!

Just when I thought it was safe to go back into the water...

There is a new internal medicine doctor in the neighboring village. I figured I'd give him a try and if I was very lucky, find myself a doctor closer than an hour and a half away. People gave him good informal reviews, but always prefaced it with, "He's very young." I took that to mean he was inexperienced...and young. I had hoped with fresh medical training he was at least knowledgeable.

The trend in my area is for clinics to screen prospective patients to judge in advance if they are worthy of health care. Yeah, this is just an indication of our very bad health care system. I'm pretty sure they do this to weed out all the opiate addicts, but don't drug addicts deserve health care, too? I find it offensive and insulting, but this is the new normal out in the Bush on the edge of civilization thanks to the drug addiction epidemic.

I actually attempted this process about a month ago at a clinic with a nest of new nurse-practitioners. As instructed, I ordered medical records from the fired-rehired-fired again idiot nurse practitioner. A month later she had still not sent my records. I decided I didn't need another useless nurse-practitioner in my life and gave up.

So this time I thought I'd be smarter about this and ordered records from another doctor, one who was more efficient and professional to expedite the process. I waited two weeks and never heard from the internist's office. I called. I had been approved! They just failed to inform me. Not a good sign. I made an appointment. That took a total of three weeks.

Dr. Orange Cone entered the room with a scowl on his face. He was young. Really young. And very hostile. He demanded to know why I was there. I proceeded to tell him of my hospital emergency visit. He listened impatiently, scowling the whole time, and avoiding eye contact. I noticed his fingers were neurotically tapping his leg. I wondered if he was a drug addict himself.

When we got around to discussing drugs, I tried to tell him of my intolerance and the debilitating side effects I get from most. He scoffed and sarcastically lectured me on how every one needs to take drugs. He demanded proof, "How do you KNOW? Where are your allergy tests?"  How many doctors throughout the years have dismissed my information and told me I was being ridiculous? He informed me I must take drugs anyway and suffer the misery. I was shocked to the point of amusement. I scoffed back at him. Maybe his scoffing was catching?

When he ordered labs I asked why he didn't order the thyroid antibody tests. He reprimanded with an impatient, sarcastic tone it doesn't matter if I have Hashimoto's or not, only if my thyroid is working. So. Incredibly. Ignorant. The appointment should have lasted about an hour, but after fifteen minutes he started excusing himself repeatedly,"If you don't have anymore questions...." He'd get up only to sit down again when I'd ask another question. At one point he got up and moved to sit across the room, avoiding eye contact, and tapping his fingers incessantly. His responses were flippant, rude, and sarcastic. It was like a teenage temper tantrum.

I left the appointment feeling violated and confused. Why would the boy-doctor, someone I had never met, be so rude and hostile to some he'd never met? Did the Orange Cone hate his job? Did moving to a small town from a big city suck the soul from his orange-cone-ish being? Was Orange Cone a drug addict? He couldn't stop jittering. Or was Orange Cone just an entitled, arrogant, disrespectful kid pretending to be an adult? Or maybe he doesn't like naturopaths?

OH MY GOD! I totally screwed up! The medical records I had sent were from a naturopath with information about my chemical sensitivity. I know better. One doesn't cross-contaminate between a holistic doctor and an AMA ignorant. Even though MCS now has a medical diagnostic code it still isn't accepted nor is modern medical training more open-minded about chemical sensitivity.

When I came to my senses and realized what I had done I reviewed the conversation in this new light. I recalled toward the end of the appointment he sarcastically and impatiently demanded to know if I had any other conditions not mentioned. I said, "Menopause, but there isn't anything to be done." Was he fishing for my admission of chemical sensitivity hoping to continue berating my health issues? I didn't say anything, but my records would have unknowingly divulged my secret. This is the state of medical care for the chemically sensitive. I have to pay for that useless appointment. What a waste of my time and money!

Orange Cone Procedures: See the danger. Go around. And keep going. I know I'm supposed to forgive and not be angry at this abuse of power and lack of health care, but that's not going to happen.

You're NOT Crazy and You're NOT Alone

The title of this post should be the mantra of everyone with MCS, however, it just happens to be the title of the latest book on Hashimoto's Thyroiditis. Unlike most other Hashimoto's books that explain in detail what is happening, how it is happening and why it is happening, this one refreshingly addresses the emotional and mental challenges faced by those diagnosed with this debilitating condition.

Naturally I was skeptical. I was anticipating another dry, scientific consumer health book. Yeah, I know about the TSH labs and the T3/T4 conversion and the adrenal connection and the five hundred supplements I should be taking. I even know about the miracle diet. When one has years of first-hand experience with Hashimoto's and has read nearly every book on the subject, finding new information is rare. Most books say the same thing over and over again boring me to tears. I'm very happy to say I actually learned something new with this book and it was surprisingly entertaining! Thank you Stacey Robbins!

Author Stacey Robbins is writing from her own personal experience and right away claims she's not a doctor nor a scientist. She doesn't even pretend she has any authority on the subject other than her years of suffering. She is sharing and that's all. I love people who share! Her writing style is conversational and at times hilarious. The text is broken into short digestible paragraphs and more often single sentences with double-spaced lines for conversational emphasis. It's rather creative and makes the book really easy to read. It feels fun and her stories are often charming, but I have to admit I felt irritated by the style at times. She often babbles and constantly says, "But I digress..."  I also didn't care for the constant references to religion and often found myself skipping over anything that looked like God talk. I skipped over most of the chapter on supplements. Still, overall I liked it anyway. She confesses dietary challenges, weight gain, bathroom traumas, child abuse, crippling exhaustion, and bad doctor experiences. Commiseration is easy and more times than not I was overwhelmed with the feeling finally someone who understands me! Hence the title, You're Not Crazy and You're Not Alone. It doesn't matter if I know thousands of people out there have MCS or Hashimoto's, I always think I am alone with my experiences. I'm really not!

Here are the highlights I found especially enlightening:

She calls bad doctors "Orange Cones". You know, the construction cones that are put out to warn and protect you from dangerous situations. LOL Her advice on how to handle bad doctors...go around them! They are only obstacles on our paths to finding quality information. "Orange Cones don't do the work. They simply point to you, in their bright orange color to 'Go around.'" She suggests as a path to forgiveness to take them "out of the "The Asshole Who Didn't Help Me" category and put them in the "Orange Cone" category". She's heavy on forgiveness which I also found a bit irritating.

Fettuccine Alfredo is a "formula for weapons of mass destruction."

"If you eat that way with Hashimoto's and it's not your last meal, you'll kinda wish it were."

Most people with Hashimoto's have been abused as children and experienced love patterns of rejection.

Perfectionism is a side effect of child abuse, but it is a form of self-rejection.

Most people with Hashimoto's were in a car accident or experienced whiplash just before they were diagnosed. Hmmm...now that is interesting.

People with Hashimoto's don't like water. Sometimes it makes them sick. Consequently, dehydration is a common problem and contributes to EMF sensitivities. Anxiety is a symptom of dehydration.

People with Hashimoto's have severe mitochondrial dysfunction. Our cells aren't working optimally and that makes exercise difficult. Mild exercise is good; strenuous exercise is a trigger for an autoimmune response and it weakens the immune system.

She talks about walking as the perfect exercise for Hashi's people, but she says resist the urge to run. "Let go of romantic notions of what looks good." (Too bad I didn't read this book before I got the bright idea to jog last year! It might have saved me a whole lot of misery.)

Synthroid (thyroid medication) has gluten in it! WHOA!

Flappy, wiggly underarms are a symptom of hypothyroidism and adrenal fatigue! She calls them "lunch lady arms". HA! That's probably not a nice thing to say, but I thought it was funny.

Soy pulls iodine from your thyroid.

People come into your life to give you gifts of information.

She uses bentonite clay for cleansing especially if you eat something bad and need it expelled quickly.

Jin Shin Jyutsu is a Japanese modality of healing, or energy work. It sounds fascinating and I already believe our bodies are total health systems. I need to do some research into this...

She's big into gratitudes. I like people who focus on being grateful.

A lot of her information is directly related to MCS and at times thought I was reading a book on chemical sensitivity. I believe it's all related anyway.

HOORAY!

HAPPY VALENTINE'S DAY!