My Journey

I suffered from migraines for as long as I can remember.  I would hide under covers and keep everything off just keep the throbbing from increasing.  I tell people it is like having your head in a vice that is being tightened while a full court basketball game is going on inside your head when they ask what it is like for me.  That doesn’t include the times that the migraines come with nausea.   I always attributed it to genetics because my dad has migraines, too.

Vertigo decided to be a semi-regular visitor once I was in college.  After college, heart palpitations and an increase in gastrointestinal problems started to frequent my life.  After moving to Louisville and marrying Chaz, I seemed to be undergoing batteries of tests every few years for one thing or another.  The Summer after we married, the migraines increased to daily.  My quack doctor at the time thought it was lupus, but it wasn’t and I found myself seeing a neurologist regularly and on one medication after another.  I finally went to a chiropractor for my back and discovered how off my neck alignment was.  My neurologist wasn’t happy I started seeing a chiropractor and I never saw her or the meds again.

One year I underwent more tests, including a colonoscopy, after battling alternating constipation and diarrhea.  The quack doctor tried to send me in for the same tests I already went through when the colonoscopy came back negative for anything and I fired him.  He certainly wasn’t paying enough attention to what he already had me go through for me to keep paying him.  I found a new doctor and he diagnosed me with IBS after checking my medical records.  No more tests necessary.

Another year I had back to back to back respiratory infections after a sinus infection.  My allergist had to test me for asthma because of the wheezing I was going through and because my doctor wanted to make sure I wasn’t developing asthma since it runs in my family.  Pulmonary function tests were within normal limits and my allergist believed it to be lung damage from my lungs shutting down during the severe sinus infection and then the lungs getting infected themselves.  I found myself on a regular inhaler and carrying around another inhaler with a spacer.

I had a lesion on the top of my left foot removed in 2005 that was sitting on my nerve and had done damage to the nerve before it was removed.  Once it was out I developed idiopathic neuropathy and wound up on Lyrica as my podiatrist tried everything in the book to figure out what was causing it.  Not only did my foot buzz most of the time, it got more intense if anyone touched it, including myself.  There were times it just throbbed with pain.  Then there were the times that pain would shoot through it as if I were being stabbed.  Those were fun times, especially if it happened while I was in a meeting.  I had to bite my tongue instead of jump out of my chair screaming all manner of obscenities.  After a year of test after test, an attempt at physical therapy, and immobilizing it in a storm trooper boot, I got sent to pain management.  That meant even more medication and a pain patch.

In the Fall of 2008, shortly after starting a new job, illness creeped in again.  I didn’t know it was illness at the time and I didn’t realize I was ill for much longer than just that Fall.  I was fatigued all the time.  It got worse and worse over the months and by Christmas I had gained every bit of weight I lost over the years and was back at my heaviest.  Folding a load of laundry was like carrying a load of bricks for me.  Many times I had to lie down or even nap, because the sheer exhaustion and fatigue it caused.  Just that simple mundane task I’ve done for years.  Then, I was tiring out carrying groceries up a flight of stairs and into the apartment.  The only thing that moved me to get them put away instead of pass out right at the door, was knowing the groceries would spoil if I didn’t tend to them right away.  The day I nearly had to call Chaz when I was halfway through the grocery shopping was the day I told him he had to take over the shopping.  I lost my energy right there in the middle of the store.  I just wanted to sit down and nap right there in the back aisle.

My IBS seemed to go into overdrive.  My eyesight was blurry.  I couldn’t concentrate or focus.   My memory, which was once described by a former co-worker as a “file drawer,” went downhill.  If I wanted any chance of remembering anything, I had to write it down.  My breathing was more labored and I had to use my Albuterol inhaler for the first time in a year or so.  I had more headaches than usual and different from my migraines and sinus headaches.  I had horrible mood swings.  The smallest thing could make me angry.  Things that I would normally ignore and let pass.  Luckily, I was able to recognize this early on and prevent a lot of verbal aggression.  Unfortunately for Chaz and some poor guy at cheapoair.com, I had an outburst or two that I couldn’t head off at the pass.  My body had gone haywire and I was falling apart.

I felt that maybe I just needed some rest.  Christmas was getting near and my boss closed the office between Christmas and New Year.  Surely a break would help.  Starting Christmas day, I did pretty much nothing except what was necessary for my entire vacation.  Every day I woke up feeling the same.  Utterly and completely exhausted.   I called my doctor after several days of this.  He was out-of-town and I could have seen another doctor in his practice, but this was important enough to wait to see him since he knows my history the best.  Until then, I stayed in bed unless I had to go to work or fix dinner.

Now doctors don’t always know what is wrong when you come in and they send you out for tests.  Mine sent me for lab work.  Needles.  I hate needles.  Since it was afternoon when I saw him, I couldn’t do the lab work until the next day because it was fasting blood tests.  So, next morning I get up bright and early for the trek and wait for my turn in the lab office.  Have I mentioned I don’t like needles?  I hate needles.  I hate ‘em.  I hate ‘em.  I hate ‘em.  I tolerated them for my allergy shots and for acupuncture.  I really loathe the needles they use for lab work.  Especially when it stays in your arm while they take seven vials of my blood.  Yes, they took seven vials.  I nearly cried.   I started to feel funny a few hours later.  My right arm started going numb (the same arm that got poked) and I felt light headed.  I nearly went home from work, but somehow held out until the end of my work day.  Later, when I took the bandage off from the lab work, I was greeted with a nice big bruise.  WTF? went through my head.  I’ve had the occasional bruise after blood is taken, but not the size of the one that was staring me in the face.  The next morning I woke up and couldn’t move.  I couldn’t roll over to get out of bed and in trying to force myself to move, I fell back asleep.  My SIL, whom I was working with at the time, called in a panic because I wasn’t at work and didn’t call.

This was around the time that I noticed that my whole body became ultra-sensitive to touch.  I have friends that like to poke me in the arm.  Just a light poke that doesn’t really bother me.  If they had poked me then, I would have screamed from pain.  Yes, something was rotten in the state of my health.

My doctor sent me a copy of my labs along with a prescription for Synthroid and a letter stating that I have Hypothyroidism.   I went over my labs, which I can understand most of, thanks to a previous job, and it wasn’t adding up for me.  So, first thing I did was call and leave his nurse a message with QUESTIONS!  Then I sent Dr. Cuz a message with the results.  I always go to her as a second opinion/sounding board.  Not that I don’t trust my doctor.  I just like being able to go to her with questions and whatnot to make sure I’m not being steered in the wrong direction and for her assurance that everything will be okay.  My doctor’s nurse called me back the next day with the answers to my questions.  And with that, I took in my prescription to my pharmacy and started down the road of life with Synthroid.

I stopped at my pharmacy after work.  It was on the way home.  I passed by it every day going to and from the office.   I patiently waited for my pharmacist to fill it and he made sure to give me verbal instructions how to take it.  I had the best pharmacist there.  My first visit he introduced himself to me and would always say hello to me if he saw me in the store even if it wasn’t to pick up a prescription.  Mom and Pop pharmacies are tops as far as I’m concerned.  I never had that kind of service at a chain pharmacy.  That afternoon, he made sure to emphasize to take the Synthroid on an empty stomach and to not eat for thirty minutes to an hour after taking it.

I got home and went through the medication information that Frank included with my prescription, as well as the extra stickers on the bottle warning me not to take certain supplements for at least 4 hours after taking the medication.  I hadn’t started taking it yet and it was already changing my world.

I like to eat breakfast when I wake up.  I’m normally STARVING by the time I wake up.  My thought was, How the heck am I going to be able to be awake for an hour BEFORE I eat? Then there was the question of when to take everything else I took.  It was complicated to figure out, okay I can take this with it, but this has to wait.  My brain wasn’t functioning well, remember.  Trying to think like that was too overwhelming and actually trying to put a plan into practice would have confused me.  My fix: Get up, take the Synthroid, take shower and get ready for work, THEN eat, and take everything else with me to work to take four hours after I had taken the Synthroid.  That worked for a little while.

I had a hard time with my morning routine and by the time I was ready, I was near to passing out because I needed food.  Next fix: Keep Synthroid by the bed with a glass of water and take as soon as I opened my eyes even if I went back to sleep.  I was able to eat after I woke up, but it was still slow going for me.

I sent a cousin of mine who had thyroid cancer and asked about her experience with it since she had hypothyroidism symptoms before her operation.  She had good and wonderful things to say about the medication and made me feel better with her tale of how she felt before she was on Synthroid.  She gave me hope when I had none.  She reminded me of what I knew about medications taking up to 4-6 weeks before being fully effective.  This I knew, but had forgotten in the despair of trying to make life work while sick. That gave me more hope.

Chaz and I flew back to Moloka`i at the end of January for my grandfather’s funeral.  I felt worn out and near passing out by the time we got there.  The only thing that kept me going that night was being with my family again, even if it was for a funeral.  While sitting around with uncles, aunties, and cousins, my feet felt like I was on them all day.  They bothered me on the plane and I adjusted my laces because they were swelling more than normal when flying.  My thought was that it was my circulation.  So, I put them up as much as I could.

I have very little memory of actually doing prep work and cleaning that weekend.  We spend days cleaning and preparing for big family gatherings.  It starts early in the morning and everyone is expected to help.  6am calls aren’t too difficult when the rooster wakes you earlier than that.  I know my husband did a lot of cleaning, but I really don’t remember doing much except for on Superbowl Sunday because I kept asking my auntie, “What do you need me to do?” all morning.  I do remember having difficulty getting up from my chair A LOT.  It was like I had no strength in my legs at all.  I knew this was something I was going to have to mention to my doctor and thought it was my circulation and that the plane ride triggered it.

We returned home and I still felt like I was going downhill.  I didn’t feel any better and I was spending more time in bed.  I had no energy for anything.  Planning things with friends was tenuous because if my energy was really low, I didn’t feel like going anywhere.  I felt like that pretty much all of the time and my friends didn’t quite understand the severity of my illness and why I was so exhausted all the time.   Nor did I have the energy to try to explain it to them.

My brain seemed to become even more fuzzy.  I would think of one word and end up typing a completely different word.  I was flipping numbers around and I had never had a problem with dyslexia.  Two things that are not good in the life of a grant writer.

Cold and I don’t really get along at all.   I was wearing my winter coat in October my first Winter in Kentucky.  Okay, so it was Fall.  I’m not used to Fall weather.  Give me terminal Summer any time and I’m happy.  After a few years I finally got acclimated to Winter and could tolerate it.  The Winter of 2008-2009 was the worst Winter ever for me.  I was cold all the time.  I felt like it was really 30 degrees colder than it actually was.  It didn’t help that the heat and A/C in our building at work was controlled by the hospital and most of the Winter the A/C stayed on.  It wasn’t unusual to see me in my office with my coat and scarf still on, sometimes my hat and sometimes my gloves if I wasn’t typing on the computer.

My first follow-up was six weeks after my diagnosis.  I was sure my doctor was going to increase my medication after telling him about continuing to feel fatigued and staying in bed during waking hours while at home.  My labs told him otherwise.  He kept me on the same dose.  I told him about the problem with my feet and legs, still thinking it was my circulation.  So, he checked my circulation in my feet, which he said was fine.  Well color me stumped.  My doctor, too.  My ANA levels were still elevated as well.  Since, I had previously tested with abnormal levels when I was still with the quack doctor and all the lupus tests were negative, I pushed for answers in hopes that it would lead to the cause of still feeling like crap all the time.

I was referred to a rheumatologist and neurologist for more tests.   I tend to get more anxious when I have test after test run only to get met with negative results.  Not only that, my doctor asked the neurologist for an EMG.  The EMG I had in 1998 as part of the lupus testing left me in tears and the inability to use the right side of my body for several hours.  I was not looking forward to it.  My response to it was so bad that when Chaz got me to the car he said he never wanted to have an EMG done on himself.

I went in to the rheumatologist first and he discussed my labs my doctor sent over.  The one thing he explained was that the elevated ANAs don’t always mean anything and that if anything, he’d expect to find ANAs for thyroid in further testing which would indicate Hashimoto’s, autoimmune hypothyroidism.  I have to say that his whole demeanor in treating me like a person and not just another patient really put me at ease and reduced my anxiety.   I was walked over to the lab for more blood work, which left me with another gigantic bruise.  Oh joy.  I went home and took it easy after that.  I learned after my reaction to that first blood draw to not do anything after.

My follow-up with him was a bit overwhelming.  My labs did not show ANAs for Hashimoto’s like he expected.  Instead, it showed ANAs for something quite different, Sjogren’s Disease.  I sent a message to Dr. Cuz letting her know right away.  Mystery solved of the elevated ANAs.  I tried reading up more on Sjogren’s, but I was so overwhelmed with everything and put that aside for later.  I needed to deal with one thing at a time and if I wasn’t showing symptoms I didn’t need to make that a priority.

I went in to the neurologist expecting to have the EMG done that morning.  I was wrong.  So much for having other people schedule stuff for you.  I did get to sit with the neurologist for a while, explain my symptoms, what I was feeling and answered his questions.  He checked my feet and legs and discovered I did some feeling in my feet.   Lost feeling, yet it was still painful.  I have to say that he put me at ease in the same manner as the rheumatologist.  I left after scheduling another appointment for an EMG and an MRI and with orders for another blood draw to test for myasthenia gravis.  Yes, another big bruise from the vampires.

I returned for the EMG with my husband in tow.  Prepared to not be able to use whatever limb he tested.  I explained to him my nervousness about the test, about needles, and about how painful my last one was.  HeHHe kept me talking through the whole test to keep me at ease.  We discovered that he knew the neurologist that did my last test.  Yes, I told him exactly what I thought about that neurologist.  The results of the EMG amounted to nothing, the blood test was negative, and so was the MRI.

I had an overall good experience with the specialists, but I was feeling doomed at the end of it.  It was April of 2009, and I wasn’t feeling any better and still coming home from work and staying in bed the rest of the day.  I let Dr. Cuz know the results from the neurologist and she reminded me about my naturopath.

Right.  My naturopath who helped me heal my elbow from pretty bad tennis elbow without the need for further cortisone shots to said elbow.  My naturopath who helped me get off the zombiefying Lyrica and other pain meds I took for years.  My naturopath just down the road from me.

I went in to see him and talked to him about my symptoms, the multitude of tests, the added symptoms, and how I was doing nothing but staying in bed.  He sat down at his computer and looked up Synthroid online.  Sure enough, the added symptoms were all part of the side effects.  We discussed things I had looked up and read about that could naturally support my thyroid and things he knew that would.  We came up with a plan and I headed straight for Whole Foods after leaving his office.

I did a lot better off the Synthroid and using supplements to support my thyroid.  I still had moments of unbearable fatigue.  I had to count my spoons every morning to make sure I had the energy for what I needed to do through the day.

We went to California for Thanksgiving with my best friend and her family that year.  We threw a mini-reunion with some of our high school friends from band and during the several conversations going on at once, one of our friends picked up on me across the room talking about hypothyroidism.  She has it, too.  She informed me of a new book out by Jillian Michaels, Master Your Metabolism, in which she discusses her own battle with hypothyroidism.

I found the book when we got home and started reading.  Not only does Jillian Michaels pepper the book with her own history of being overweight and being unable to lose weight, but her struggles once she was diagnosed.  She also explains how processed and refined foods mess with our metabolism and why, along with the effects environmental toxins and medications can have on our metabolism as well.  I didn’t wait to start making changes before finishing the book.  I started eating less refined and processed foods.  I started using my own homemade cleaners again.  I went off the Pill.  I stopped using fluoride toothpaste.  I started using a water filter pitcher.  I ate more fruits and veggies.  I didn’t miss refined sugar.  I felt better and I dropped six pounds without even trying.  My focus was solely to get healthy.  The weight loss was a bonus.  I felt more energetic and less symptomatic.

Silly Sissy sent me an article by Mark Hyman, M.D., a month later on the effects of gluten and how it causes chronic illnesses like hypothyroidism.  It intrigued me so I did more digging online and I read Dr. Hyman’s book, Ultrametabolism.  He debunked a lot of popular diet myths in the book and how those diets actually work against your metabolism in the long run.

I decided it was worth a try to eliminate gluten from my diet for a few weeks after doing quite a bit of research.  In March of 2010, I eliminated gluten, dairy, and eggs at the same time.  Yes, I’m crazy.  I know.  I recently had a follow up with my doctor and I didn’t want to go back for more tests.  (Don’t do what I did people, GO GET TESTED if you suspect you have a problem with gluten. If they are all negative, THEN try eliminating it to see how you feel.)  I added eggs back in after two weeks because I was missing them in the morning and I did fine when I added them back in.  I added dairy back in a week later with some extra mucous in my sinuses.  Lastly, one piece of sprouted grain toast one Friday morning and no other gluten the rest of the day.  I felt fine.

Next morning, I did not feel fine.  I couldn’t move when I woke up.  This had happened before with the blood draws.  I laid in bed for a while before I finally was able to drag myself out.  I knew this was the wake-up call.  No more gluten.  My whole body was sluggish and I couldn’t think straight.  Once I was able to move around later in the day I started cleaning out the fridge and pantry of everything with gluten.  Except for a few things I left for Chaz.  I had a few bags worth of things that I threw out.  You might be gasping wondering why I didn’t give the food away.  If I wasn’t going to eat it, I sure as heck wasn’t going to give it to anyone else to eat.

One day I would be okay with no gluten, then the next day I’m crying because I want pizza (after only having pizza once since changing to a whole foods diet).  I had little pity parties for myself for the things that I could never have again even if I wasn’t eating them to begin with.  It is one thing to choose not to eat something.  It is quite different to know you can never have it again because it makes you so sick.

Three weeks after the sprouted toast incident I realized I wasn’t symptomatic anymore.  No migraines.  No vertigo.  No heart palpitations.  No brain fog.  No gastrointestinal system doing somersaults in my body.  My body temperature and blood pressure which always ran low my whole life and which nurses would constantly reassure me that it’s normal was finally “normal.”   The only thing that didn’t go away was my cold hands and feet and feeling like it was much colder than it really was.  This was when I reached acceptance and fully embraced my new lifestyle.  Looking back, all those mornings I was sick after eating breakfast before school was really gluten doing a number on my body.  Of course because I was sick so much, my mother thought I was faking it and would send me to school anyway.

I have met so many wonderful people who I now call friend who are also diagnosed with Celiac or non-Celiac gluten intolerance.  These friends went through a lifetime of struggles before finally being diagnosed by a doctor or self-diagnosed.  I learn a lot from them and I keep learning from books that keep coming out on the market because my story doesn’t end here.

No.

Summer 2011, I realized I was having a gluten-like reaction to something that I knew wasn’t gluten.  I have become so attuned to my body that I know when something is wrong with just one tiny little symptom that most people wouldn’t think twice about.  I also know that when something feels wrong, I need to go back mentally about anything new I’ve eaten or used in the last few days.  I traced it back to dairy.  No more dairy for me.  If I have it now, the reactions are not quite like a glutening, but I still react.

March 2012, I went to see a hematologist at the request of my current doctor (we moved in October 2010 to a new city) after my yearly labs showed a significant change in my platelet count. Dr. Cuz reassured me it was likely a lab issue and nothing to worry about.  The hematologist reassured me it was likely a lab issue and not to worry, but he took TWELVE vials of blood anyway just to rule everything out and to see why my anemia never resolved.  The result was a diagnosis of beta thalassemia traits.  He’s not sure how I have it because I don’t fit the ethnic profile, but gave me the diagnosis because the cousin I mentioned earlier in my story is diagnosed with it.  Later, I discovered that beta thalassemia tends to occur in Chinese people.  I know there was some debate as to whether or not we have Chinese blood on my dad’s side.  I’d say this is a good case.  So, this is what is really causing my anemia and the hematologist assured me it was nothing to worry about until we decide to have kids.   Genetic counseling will be in our future.

Summer 2012 I started to feel even more lethargic than usual and plantar fasciitis decided it would flare up to massive proportions.  Nothing I did quelled the beast.  I mean nothing.  Ice, stretches, elevations, rice, nothing.  The more inflamed my feet were because of it, the more exhausted I was.  The longer I was on them at work at the big box store, the more exhausted I was.  Inflammation began taking over my body.  The elbow my naturopath treated started hurting again.  The idiopathic neuropathy started creeping back.  I was in pain everywhere and I felt like gluten had crept back in, but I knew it wasn’t the case.

In the middle of all that, I had a serious case of itching all over with a wicked case of dandruff everywhere.  Back in the day I would’ve chalked it up to my allergies and taken a Zyrtec.  I knew better.  I started systematically eliminating anything it could possibly be and came up with nothing.  Finally, I discovered it was eggs while we were on vacation because I somehow went a week without eggs .  Yes, I really miss eggs.

The beginning of November, my doctor and I were reviewing my symptoms because I thought something was going on with my thyroid and I was counting spoons again.  Instead, she pinpointed my adrenals.  It hit me upside the head, but I knew it was a possibility since a friend had suggested it.  Going through the list of symptoms I felt like a classic textbook case.  Fatigue, difficulty sleeping, dragging all morning no matter how much sleep I got, heart palpitations, getting cold easily, weight gain around my core, low sex drive, postural hypotension, craving a lot of protein, food allergies, difficulty managing stress and moods, pain in my neck and shoulders, increased PMS.

I saw some improvement after the first week on supplements and just generally knowing where to go from there.  I was in a good position to already know generally what I was dealing with and that I needed to get my mental, emotional, and physical stress levels down or I was going to end up in the hospital.  There was more than one day a week where I pushed myself because I felt like I would collapse in the middle of work and I was determined not to.   It was time to make me a priority.  I went to one of my bosses and explained my diagnosis and the need for reducing my hours at work.  I began starting to reframe things that would trigger mental and emotional stress.  I realized that I likely was struggling with this alongside hypothyroidism and Celiac for years but never knew.

Despite feeling like my heart was dancing all over my chest, I was seeing improvement the first week.  All it took was one really bad day at work to set me back.  It was the day before Thanksgiving and I still had food to prep for the next day.  I came home and settled in on the sofa because that was my new home.  I traded the bed from my hypothyroid days for the sofa.  I decided that if I was going to make me a priority then I really needed to do so while I was in Allentown with one of my aunties the week after Thanksgiving.  Feeling the dead to the world after my first day back to work after a few days away cemented the decision.  I was not crawling in to bed, but lying on the sofa every day into the night after work was the same thing.  I left a long career at a psychiatric residential treatment facility when my bosses wanted to increase my work load yet again and either my clients would suffer or I would suffer.  I walked away because I knew I couldn’t provide less for the young men I was already working with and I knew that mean I would work myself into the ground.  Little did I know that my thyroid was already misfiring when I left.

I turned in my two week notice at work and didn’t look back.  I was able to reframe my thoughts at work to manage the mental and emotional stressors there.  I wasn’t able to manage the physical stress of the job. This wasn’t a whimsical decision I made.  I thought through my options – medical leave, reducing my hours and availability even more, and transferring to another position in the store.  I already knew that just one bad day could set me back and if I took a leave, there was no guarantee how long I would be out or that my body wouldn’t just cave again as soon as I went back.

I know that the adrenal fatigue is likely connected to my hypothyroidism, Celiac, and a potential estrogen dominance that my doctor and I are exploring.  I know that I will beat this…in time.  I know I have so many supportive friends and family to lean on when I’m having a really sucky day, along with a really supportive husband who will drag me out for dinner when I’m feeling too crappy to stand in the kitchen and fix dinner myself.

This is about me continuing on my journey back to healthy living, which means total health and not just what I eat.  This is a reminder that even once we get that first diagnosis and see changes happen, it is not the end, especially for those of us with Celiac and/or other autoimmune disorders.  Things lurk and hide behind one diagnosis only to creep up and blindside you with a 2 x 4.

Here’s to our health,

Debi

updated 1/4/2013