Tuesday, April 17, 2018

My Journey With Hashimoto's Disease

photo by: Christina Decamp Photography

Well, I feel like it is time, (drumroll) time to share with those around me, a little bit more of what I have been battling quietly for some time.  I tend to share my stories best in writing so here goes...

Some of you already know that I was diagnosed with Hashimoto's Disease about three years ago.  I had been battling the symptoms of a thyroid disease since my pregnancy with my first kiddo, nearly 8 years prior in 2009.  I didn't know what I was dealing with at that point and I didn't know what to do, so I ignored the signs and symptoms.  I always felt super run down, sluggish and very foggy brained.  This was after my kiddo was sleeping through the night.  I got a full night sleep and I ate healthy enough and yet I still felt awful.  Those were my symptoms back then when the problem was new and my thyroid was just beginning to go off the rails.  Maybe if I would have addressed the situation then it wouldn't have gotten as bad as it has...maybe.  

Another problem that I have is that I am the absolute worst at advocating for myself.  I will advocate and champion for my friends and family all day long.  I will encourage people to go to the doctor and schedule appointments for them and research their conditions.  I will listen for countless hours to people talk about their struggles and walk alongside them through it but, when it comes to me...I like to ignore things and hope that they will just go away...that is, until they don't.  

A few years ago I went to the doctor for my annual well check appointment and while there they asked me how I was feeling overall.  At their prompting, I shared a bit of my daily normal (which wasn't great at all but, it was normal to me) and they were shocked that I hadn't come in sooner.  I was shocked that they were shocked.  All Mom's are tired all the time.  All Moms have brain fog.  I figured I was just dealing with the common side effects of motherhood that most moms struggle with. 

They tested me immediately for a few auto immune diseases and the tests quickly revealed that my thyroid levels were drastically off.  So, at this point my journey with Hashimoto's Disease officially began. 

At the time I was a little shocked to have a disease label slapped on me but, on the other hand I was happy that something had been discovered.  Now all I had to do was begin taking a medicine and my energy should return, my vitiligo might slow down or even go away for good, the severe eczema on my arms might also go away, I might not have to take a nap every day of my life to function and the brain fog might lift.  That was exciting!  I had something to focus on and something to work toward.  Answers feel good!  Knowing what direction to go in life feels good.  And the hope of getting better feels amazing!  

And on that note: this is why my heart goes out to the millions who suffer with a chronic disease who do not get better and who battle through pain every day.  Those who have been told that there is nothing else that can be done.  You are heroes.  I hope you know that.  Life is so hard when suffering is a part of every moment of it.  

For those of you who are not familiar with Hashimoto's Disease, here is a brief synopsis from the Mayo Clinic website:

"Hashimoto's disease is a condition in which your immune system attacks your thyroid, a small gland at the base of your neck below your Adam's apple. The thyroid gland is part of your endocrine system, which produces hormones that coordinate many of your body's functions."

The good news is that usually if you are diagnosed with a Thyroid disease of some kind the doctor's will work with you to figure out what type of medicine and what dose your body needs to stabilize.  Once you are stabilized on medicine your body will return to normal and you should fee good again.  So please don't be alarmed. 

I have not had any success with medicine yet but, I believe that is because we have not properly gotten to the root of the real issue with my thyroid and that is the quest that I am still on at the moment.  

Symptoms of Hypo and Hashimoto Disease Include:

  • Severe Fatigue and sluggishness
  • Increased sensitivity to cold
  • Constipation, food processing issues, IBS 
  • Pale, dry skin
  • A puffy face
  • Brittle nails
  • Hair loss
  • Enlargement of the tongue, swelling of the neck and lymph nodes
  • Unexplained weight gain
  • Muscle aches, tenderness and stiffness
  • Joint pain and stiffness, arthritis like symptoms
  • Muscle weakness, muscle aches  
  • Excessive or prolonged menstrual bleeding 
  • Depression and anxiety
  • Memory lapses, severe brain fog
By the time I had the initial appointment a few years ago my thyroid had been going down hill for at least five years.  As a result my symptoms were continually getting worse.  I had all of these symptoms and have continued to battle them for the past 3 years.  My hair was falling out in small handfuls everyday.  My nails were always chipped and falling off.  My brain fog was so bad that after a car accident when my son was still an infant, I couldn't even recall what exactly had happened.  I would drive places and forget why I went there...it happened all the time. My vitiligo (loss of pigmentation all over body) was beginning to spread more rapidly.  What once started as a single quarter sized circle on my upper thigh, had turned into spots on my face, fingers legs and neck.  I was taking a nap every single day for at least two years...just to function.  A nap was a survival essential.  I was battling arthritis like symptoms in my thumbs and big toes.  Constant aches all over my body.  A sluggishness that makes picking up your feet feel like a chore. The most annoying and unpleasant of the symptoms for me has been the strangle hold around my neck.  It makes breathing and swallowing more labor some.  I also began losing my voice on a regular basis after attending any loud function.  My vocal chords simply couldn't handle the added pressure being place on them by my swelling thyroid and lymph nodes.  The laryngitis issues, and strained vocal chords have gotten increasingly severe as the years have gone on and I am presently battling it on a daily basis. 

I went to the doctor every 2-3 months for two years and each time they came back and told me that my numbers were not getting better.  So of course they kept upping my medicine level as that is what any good medical doctor should do.  Friends of mine who also have Hashimoto's Disease encouraged me and told me it would get better (and I still believe it will!) once the proper dose gets figured out.  After about a year of different doses, I started taking 75 mg of armour thyroid and finally began to feel a return of my energy, brain clarity, purpose, motivation, happiness...etc..for about a week.  It was AMAZING!! 

Unfortunately, my body didn't like taking that particular medicine at that dose level.  I started to have severe heart palpitations, burning and tingling down my right arm and cramps in my elbow.  My chest started burning and felt like something heavy was standing on my heart. I was bending over the counter in pain all day to catch my breath.  Later that night, I told my husband what was going on (took me a full day to finally tell him) and I suggested that I thought I might be having a stroke or something.  He wanted to call an ambulance.  I said that was too much work and sounded stressful and I would rather die and if it was my time then I was ready.  Poor hubby.  I am serious...I am not good at advocating for myself I told you.  I just don't know how to take care of me I guess?   

The next morning I had my regular doctor's appointment and the Dr. asked if I was having chest pains or palpitations from the medicine and I said, yes tons.  He look startled, (as any normal person except myself would) and immediately cut off the medicine at that dose, told me to take a few days off and lowered my dose until we could find a new medicine. 

The challenge with trying to get your thyroid dialed in is that for as long as you are not stabilized...you will continue to feel like junk.  Taking a little bit of thyroid medicine is no better than taking none at all.  IT DOES NOT work like that with a thyroid.  Until you get to the right dose that brings your body into a place of stabilizing...you will feel very off and all the symptoms will continue.  So every time the doctor would change a dose or experiment with a new medicine my body would go bazerk for a few weeks while it tried to figure out what to do with the new hormones flooding my system. I would get extra periods every time a new dose was prescribed and I would feel irritable on top of all of the pre-existing symptoms which continue to worsen as they go untreated. The thyroid is an organ and if it is attacked long enough it will fail.  It is best to take care of it and treat it as quickly as possible to minimize the damage that you can cause it.  If I could go back, I would have looked into my health much sooner.  Yes, I do believe I am learning something. 

So, after the issues I had with the last medicine I was switched over to a compound version of the drug so that I could choose my specific dose level and remove the fillers that most generic drugs use.  That seemed promising at first.  Sadly, after 9 months of going this route, the compound medicine has not improved my thyroid levels at all.  Each appointment the Dr. has bumped me up a little higher and a little higher and now I am at the level similar to that of a person who has no thyroid at all...quite possibly because my thyroid has been damaged for so long that it is in fact not functioning at all.  We will soon find that out, at least that is my hope. 

 And for the record, I realize that there are plenty of people who have had their thyroids removed (people that I know who have graves disease or who have had thyroid cancer) and are now taking medicine for life to keep their body balanced.  I know that isn't the end of the world to have a thyroid removed but, it is also not ideal and I would really like to prevent going that route for as long as possible.  In fact, I would love to do all that I can with my diet and lifestyle choices in hopes that I could take far less medication than I currently am.  That would be the best case scenario! 

In my effort to improve my situation I decided to eat gluten free for almost a year and a half.  That was HORRIBLE at first lemme tell yah.  I was depressed about it initially because I love pasta and bread so much.  Fluffy and soft foods make me happy.  The gluten-free alternative is simply not the same and takes a bit of time to adjust to.  I ate my share of spaghetti squash, zoodles, gluten-free bread and pizza etc.  I stopped eating out almost everywhere and I pretty much stopped eating everything that I loved.  I was determined to do whatever I could to help my body. When you feel that terrible you really should be determined to do whatever it takes right?  

One thing I have learned repeatedly in life is to give myself grace to work through something difficult.  It takes time to process a big change.  It takes time to process our feelings about our health and our limitations.  It takes time to accept what you are facing.  I was so upset about my dietary restrictions for the first few months.  I was angry.  I hate cooking and I had no idea how to eat or what to do.  I grieved every time someone ate a donut in front of me.  I grieved when my family went to Olive Garden (a favorite pasta destination of mine).  I grieved when I couldn't bite into the soft crust of a delicious take out pizza.  I felt sad and angry for a couple of months and it was hard to share that with the world.   

The world likes happy, resilient people who show very little sign of weakness.  Whelp, I am not that girl, so I have to hide from the world and work through things privately.  Another thing I am learning to challenge. Hello world! It's me.  The girl with big feelings and a big heart.  Hiding is also killing me so I am coming out for a while.  And that is the truth isn't it...for all of us...Maybe hiding isn't helping after all.   

Hiding certainly doesn't make anyone feel better...but, so many people are hiding right now.  Hiding insecurities.  Hiding shame.  Hiding addictions.  Hiding pain.  Hiding heartache.  Hiding loneliness. Hiding. I see you friend.  You are not alone.  Let's be brave together.  Let's come out of hiding.  Let's do the nitty gritty work of being vulnerable so that we can experience more freedom and healing together.  No more hiding.  

After a few months of eating gluten-free, I am happy to report that I was no longer bitter. I had accepted my diet and my health issues for what they were and I was okay with my restrictions because I was hopeful that I would improve!  Give yourself the grace for the messy times of working through feelings.  We are so hard on ourselves and we often expect such quick resolutions...but, the truth is that sometimes it takes time to work through feelings.  Give yourself time to process what you are facing.  

Another thing that I am very passionate about is prayer! I believe that God can heal sickness and disease!  I know it with all of my heart.  

So this little note is to all of my passionate prayer warrior friends reading this who are wondering if I have prayed or prayed enough or sought God enough..Yes friends, I have been praying since day one. I have had family and friends praying for me and laying hands on me and praying some more.  My petitions to Heaven will never cease.   And I say this in the utmost love, sweet, wonderful Christian prayer-warrior friends...please be kind to the sick and withhold your judgement towards those suffering with chronic illnesses.  If you have not personally battled a chronic illness it is quite understandable that you might not have the understanding yet or even the empathy to come alongside a person who is battling daily. That is ok.  It takes a special kind of person to come alongside someone who is suffering for a long time and to not grow weary walking with them in it.  To be able to love someone at their worst...well, that is truly where I have seen Christ the most clearly in people.  Love is patient, love is kind and it can take a lot of patience and kindness to support a hurting person.

Last week I had  an appointment with my endocrinologist. My friend's were hopeful and my hubby was hopeful.  I didn't feel any different physically so I wasn't sure what to think.  

My numbers came back...I was just as off as ever on this new dose...no improvement whatsoever.  So discouraging.  Took the wind out of my sails let me tell yah.  That is when the doctor explained that he is not sure why my thyroid is not stabilizing and he is bumping me up to about the max that I can go on my medicine.  I asked him if he could refer me to a dietary specialist and he did and I left with my heart feeling heavy.  Three years into my thyroid journey and I find myself in the same place as when it all started, only now my symptoms are much, much worse.  

A few days later, I gathered with my Bible study friends we prayed again and sweet Angie laid her hand on my neck and prayed for healing and I was comforted and filled with hope again.  I am so thankful for my friends. 

And through it all, you need to know that I KNOW that God's got me.  This is hard and feeling lousy every day has been exhausting but, I am filled with hope and that anchors me and keeps me stable.  

If you are battling a chronic illness of any kind, I hope and pray that you have a wonderful support system.  Your body might be getting beat up every day but if you are surrounded by people who build you up with encouragement and hope it can make a world of difference.  Encouragement and speaking life and hope into a weary person goes a long way.  I am passionate about encouragement because I know how badly so many of us need it! Be a light.  Be willing to get in the mud to help a friend out.  It's actually a beautiful place to be...in the mud...because real love can get messy and it should be messy sometimes because that is what this beautiful life is all about.  Messy is part of what makes things beautiful. 

I began reading a book about re-booting the immune system and found it to be quite interesting.  I had been thinking about going dairy free for some time and while reading this book I decided to go for it.  I have always had a strange phlegm reaction to any and all dairy.  I have never liked milk, sour cream, yogurt or ice cream for that very reason.  Little did I know that clearing my throat every time I consume dairy is a tell tale sign of a food intolerance ...but, I love cheese and I eat a lot of it so I have ignored that sign all of my life.  Maybe at the very least I am learning to stop ignoring what my body is telling me....maybe. 

As of four days ago, I am dairy-free and gluten-free.  Yes, it is a bummer but, this hasn't hit me nearly as hard as going gluten free did because I think I've been there done that.  Now, I am just doing what needs to be done and trying to not overthink it too much.  I am however; struggling with meals as I so dislike cooking and since I don't have any energy (thanks thyroid) it is hard to muster up the energy for something that I hate.  This kind of diet requires a tremendous amount of meal planning and a whole lot more cooking...life suddenly got more annoying.  So if you have any EASY recipes that actually taste good I am all ears.  Also any favorite snacks or appetizers.  Again, I repeat, EASY is the key word for me and food.  If it is not easy I will not prepare it.  For those of you that hate cleaning you can understand..I love cleaning...hate cooking.  Just the way that I was wired.  Please share your favorite websites, cooks, food products that you love that are dairy free etc.  

I do have a praise report.  After being dairy free for 4 days I have already noticed a significant decline in the amount of phlegm in my throat.  I am use to clearing my throat dozens of time in an hour.  That constant clearing also contributed to why my throat was often sore and scratchy...all that clearing takes a toll on the throat and vocal chords.  I am not choking on phlegm anymore either.  I use to more or less choke on the phlegm in my throat all day long...hence the constant need to clear my throat.  As I sit here typing my throat feels completely clear.  I cannot believe it actually.  I have not experienced this ever in my entire life...so I am still being cautious about jumping to a conclusion.  I will report again in a month or two and let you all know if the result continues to be the same.  But, wow! This could be a huge improvement in the making.  

I am also in the  process of leaving my current endocrinologist and scheduling an appointment with a new endocrine specialist and one of the best in the area.  I am hoping that a new set of eyes on my situation might shed more light on things.  I am very hopeful.  I am very tired and tired of feeling lousy but so hopeful.  I will also keep you posted on things after I meet with the new specialist.  

This past weekend I went to a really fun museum with my kiddo and some of our good friends.  I felt my throat and voice fading as the day went on and the soreness was extra intense.  By bedtime I had a splitting headache, zero voice and sores deep down in my throat...as if I had torn the skin from overexerting it so much.  Crazy I know but, that is what I am battling with a thyroid so diseased and so unstable. It has been three days since the museum outing and talking still hurts and my neck is crazy swollen in a strangle hold. I have been avoiding people and talking situations so that I can rest my vocal chords and hopefully bring down the inflammation a bit.  

This latest bout with laryngitis  is what brings me to my keyboard keys today.  My keys are giving me a voice.  I love talking and I love talking to people and listening to them.  I love communication and the gift that it is.  It is strange that my voice is under attack. It is strange to be pursuing silence when all I want to do is talk.  But, it brought me to my blog and I haven't been able to blog in almost two years...not of anything of any importance.  So maybe that is something to smile about.  I have missed having something to write about and it seems that now I have something to say.  

Let's face it.  It sucks to be sick.  It is a bummer to not feel great every day and still try so hard to find the energy to be a good mom, wife and friend.  It is embarrassing to be that person.  What I mean by that person, is the person that it seems so many people want to avoid because sickness makes people uncomfortable...and I think the reason for this is simply that so many of us really don't know how to help each other or what to say. That is understandable.   

The lows and hurts in life teach us compassion and build our empathy for others.  The painful losses teach us how to comfort others in their losses.  The sicknesses and journeys that we each take in our sickness teach us how to come alongside others who get sick.  This is really what life is all about.  The purpose of life...the meaning of life....is helping each other out.  We are here to reach out and lift up those around us because we have learned what it is to walk in those shoes....and if you haven't yet learned something, don't worry your time will come.  And that is not a threat..just a gentle truth.  Life is a great teacher. With each day that passes we should all be learning to become a little more selfless and a little more serving and giving because we get it...because we have learned that we are all in this together.  I am here for you and you are here for me and together we rise so much stronger.     

If you know someone who struggles with a chronic illness or depression etc. pray with them often.  Encourage them spiritually to not grow weary in their battle because trust me, it is exhausting. Ask how you can help them.  Maybe offer a meal once in a while and do it even if they say they don't need it because....they really do.  Offer to watch their kids or suggest they take a nap while you clean up for them. Listen.  Just let them talk and try to withhold your desire to fix them or tell them what is actually wrong with them according to you.  Listen some more.  People who are struggling need ears...and willing ears are hard to find these days.  Be an ear.  I am here to listen to you because I care about you.  Tell me about your day?  How are you feeling?  What is it like to battle with ....disease everyday? What is your next step? Is there anything I can do? Validate them. That must be so difficult. I can only imagine.  You are doing an amazing job in spite of how awful you feel.  Check in periodically.  Rally around that person.  Tell them how proud you are of them for fighting so hard everyday.  Tell them that they inspire you.  Tell them that you are here for them always. Build that person up with kindness and hope.  Heaven knows they need it!  You may not understand what they are battling and that is understandable.  You can look up their condition. Read up on what they are facing and inform yourself. It might be eye opening and might increase your compassion.   

Thankfully, I have a wonderful support system but, I know many who do not....especially men because more often than not they do not reach out the way that women do.  If you know a man who struggles...reach in and be there for him.  Don't assume that because a person is smiling that they are ok...that is just silly honestly.  Seek to know the heart of a person...not just the outer expression that you are seeing.  The heart often tells a very different story.  People are like books...the outside is just the cover...open the book, take some time and read it and you might actually learn a few things. 

If you have known me for any length of time you know that Jesus is my rock.  Jesus is my anchor.  He is my hope and my light and my strength.  Some people are battling something right now who really do feel utterly alone so I want to assure you that Jesus is with you right now.  You are not alone.  I promise you that.  Talk to him.  Tell him all about how you are feeling.  He wants to hear from you.  He cares for you and he will never leave you.  Jesus is the light that never goes out, even when all around seems so dark.  

On that note:  God Bless you all and have a great night!