Friday Friends: Sharing Thoughts on Autoimmune Disease

Last month was officially Autoimmune Awareness Month, but I don’t want the conversation to end with the flip of a calendar page. We need to keep discussing the topic and open the door for those with AND without autoimmune disease. Because this is our health and we want others to understand. It’s not just about understanding how we feel as fight against our own bodies and navigate the sometimes endless days of symptoms. We need others to join us and come along beside us as we work to build better communication and stronger communities across the board — online and in our real, everyday lives.

Are you ready? Are you willing to listen and hear our stories or those of your friends and family? We need you…today and tomorrow.

Join the community. Encourage anyone you know in the middle of a fight to feel well. Offer lots of grace and loving words. This means more than you realize.

And share this post to continue spreading the awareness. It is much appreciated, friends.

Stay strong. Keep fighting. You are not alone in your own battle.

A fellow fighter,

laura

~~~~~

As March ended, I posted a question on social media and shared it in several Facebook groups. Please take the time to read these stories and quotes that everyone submitted. And thank you for being a part of this community.

For those with autoimmune disease, what’s 1 thing you would tell others or want them to know?

“Some days your body just hurts and there’s nothing you can do about it…it takes so much longer to get over things like the flu or even colds/coughs. They just have no mercy on our bodies and immune systems.”
–Kristen Clements, @KristenClem

“Let food be thy medicine and medicine be thy food.”  ― Hippocrates
–Renee Baude, from Renee’s Kitchen, @reneebaude

“I have a boat load of autoimmune disorders…systemic lupus, fibromyalgia, Rynauds, Hashimoto’s, arthritis, migraines and a sensitivity to gluten. What I want people to know is this:
1) every day I make a choice that I can go to work, teach special needs students at church, take care of my family in spite of how I feel or how bad I’m in pain. Either way I don’t feel good so I choose to do things that help distract me from how I feel.
2) not all health challenges are visible or deforming
3) pain can be exhausting
4) education and taking positive steps to manage your condition is empowering and helps you to better communicate with your doctors
5) I suffered with horrible headaches for over 30 years and the docs only wanted to push narcotics so I struggled and suffered thru them. Finally I went to a neurologist who specialized in headaches to find out they’re migraines that are being managed from a preventable stand point. Don’t suffer!!! Find a doc that will really listen to you.”
–Tonya Langdon

“I have Celiac, Rheumatoid Arthritis, Sjogren’s and Fibromyalgia and I wish people knew the following: 1) If I eat gluten, even a tiny bit, I don’t throw up or have diarrhea (sorry!) instead I have severe joint pain, the feeling of someone standing on my chest, and sleep for long periods of time. So I don’t “cheat” because I’m out a week of my life. 2) I hurt. You can’t see it and perhaps you can’t tell by my happy nature, but I hurt. every single day. So if I say “My thumbs hurt” or something like that, it means they are hurting badly. 3) You might have arthritis in your knee or elsewhere, but that’s different than RA. 4) The exhaustion from RA and Fibromyalgia is almost indescribable. It’s all the way to the core of your body exhausted.”
–Deb Finnegan, check out her blog

“Being diagnosed with Celiac disease is not a curse but a blessing. I eat healthier now and I have found a community who understands what that means…rather than bemoan what I can’t eat, I celebrate all of the new things that I have found and like! Cauli-mash is just one example.”
–Kassie Layne, @kassinva

“Instead of feeling betrayed by their bodies, I would like those with AI conditions to befriend their bodies. Lifestyle, mindset, and dietary changes can have a huge impact on health, regardless of what mainstream medical doctors might say.”
–Meredith Chamorro, from She Swings on a Star, @meredithhutterc, check out her blog

“Stay positive and don’t stop trying to find a way to feel better.”
–Linda Turturino

“Hashimoto’s is autoimmune and affects many functions of the body. We need to be our own advocates. If you don’t find relief from your symptoms, keep moving forward – even if it means switching doctors a few times. I just found out yesterday the I have a 90% chance of having thyroid cancer. I knew something was wrong, but labs were always ‘in range’. ‘In range’ means nothing when you have Hashimoto’s and still feel rotten. We know our own bodies! ”
–Sharon Steele

“I wish they knew I have a disease. Sometimes I don’t feel well even though I may not say anything. Sometimes life is a struggle. That it is so difficult for me to lose weight that I don’t want any one to know that I am trying because I don’t have the same results as healthy people.”
–Kara Singleton

“It took decades for me to have a diagnosis of Hashimoto’s and hypothyroidism. Keep searching for answers and don’t give up. I was diagnosed because I went to a specialist (an endocrinologist) because my primary care doctor saw nothing abnormal with my lab work (I was .1 away from being considered hypothyroid according to some standards but was within the range of hypothyroidism by other standards and had many symptoms. The endocrinologist tested my thyroid antibodies and they were through the roof. He confirmed I was hypothyroid and had Hashimoto’s. It has been years since my diagnosis and I am feeling so much better. There are still days when I don’t feel well but they are few and far between.”
–Kim Zajan, check out her blog

“I do hurt. I feel sick most days. My definition of a successful day has changed since becoming ill with Lupus. I do smile. A lot. But I’m still sick and hurting. I know most days I “look” normal. I “act” normal. I’m often in good spirits. But I’m still sick and suffer from a potentially life-threatening disease. I push through a lot. I have to. I need to live life. But my days are different now. My work and work schedule are different now. And that’s OK. I’m doing the most I can with what I have. The next time you ask me how I am, I will probably say “ok” or “fine”. My mind and soul are ok and fine. But my body is sick. My bones hurt. There’s a literal, raging battle going on inside at all times. That’s what happens with an autoimmune disease. And the consequences of the raging battle are pain and unbearable fatigue. So, next time you see me ask me how I really am. It only takes a second. But if you’ll listen I will tell you exactly how I am doing. Your heartfelt listening, compassion, and concern may just be all the medicine I need for that day.”
–Alison Potter, check out her blog

“Sometimes even when we who have type 1 diabetes do all the “right” things, our bodies go wackadoo and do wackadoo things. (Especially in the cases of those of us who are female!) We need patience and (an attempt at) understanding from people, not judgment or suggestions that come from a place of being uninformed (or possibly worse: ill-informed) about T1.
Managing diabetes sometimes feels like another full-time job. (Even more, because it’s 24/7.) Anything you can do to ease the burden or help carry it — as long as you ask first — is likely to be appreciated.”
–Andrea H.

“It took 7 years to get a lyme disease diagnosis. People don’t have much compassion when your illness seems invisible. I’d want people to know that it’s not “all in your head”, don’t give up looking for answers when something feels wrong, and know it can get better!”
–Amber O’Toole, @amberotoole, check out her blog

“I was diagnosed with Hashi’s last fall and inflammatory Polyarthritis (most likely RA) in February. I am too young to be in this much pain. The best advice I can give anyone is that you are not promised a tomorrow so don’t wait to do things 20 years from now.”
–Michele Clark

On Abandoning Things I Love

March 18, 2012

Wow, I have neglected my dear family and friends near and far in too many ways the past nine months…I feel I have abandoned those I love and it is time for that to end… I am living in today, not yesterday and not tomorrow. Only God knows tomorrow and I am glad. I have plenty to think and do in this moment, and I am ready to begin!

It’s funny that this was the next post I’ve been planning to write. I thought I was going to share it with you last month, but things happened and I did not feel as well. I was in survival mode, just trying to make it through each day and I could only focus on the minimum.

Eat, do a task, rest, try to finish the next thing.

Plan future meals, shop for groceries, rest.

Go to appointments, rest, prepare for tomorrow.

Many tasks were on hold, especially the big projects that required more brain power. That included writing because the words were not coming. The only words I found were simple entries for my journal. Some days it was one sentence, but it was enough. I could hope for more the next day or the day after that…whatever day I woke up from the fog I hoped to write and keep telling you my story.

And now three weeks have passed and I’m finally finding my voice again. I’m in less of a reaction mode from something I ate and I’ve put the food experiments on hold.

I grow tired of constant symptoms and never-ending fatigue or brain fog.

During these days, I struggle…to make decisions.

To pick a task, big or small, and finish it.

To think outside of my little bubble.

To focus on others and reach out to friends.

These are the days I struggle with my brokenness. I can feel defeated and not persevere well. I can complain and feel overwhelmed by everything I am abandoning — the people around me, the tasks I need or want to do, and the writing I miss.

At the same time, all of it pushes me to problem solve. That’s in my nature. I’m always thinking and I’ve been pondering ways to overcome challenges since I was born.

Right now that looks like asking questions. What did I eat? Was it something different? What can I do today to feel a little better? Is there a simple task I can finish?

I go through each day, taking small steps forward. And eventually I wake up. Literally to a new day and a fresh start…Physically to more energy and less weakness…Mentally to a new brain, or so it feels when the foggy inflammation lifts…Emotionally and spiritually to wholeness and the ability to see beyond myself.

I am not failing. I am not defeated. I am not just surviving, but I am back to thriving as best as I can.

And I’m back to knowing where I belong, what I’m called to do, and who I’m here to love.

On Surviving for a Season

The next day I immediately started my new prescription of Synthroid. Again I wondered how long it would be before I noticed the difference. I had been feeling off for a while, but the Physician’s Assistant calmed many of my worries. I was not going crazy. It was just my thyroid acting up and the generic levothyroxine was not working.

So we had a new plan and I liked it. I kept the PA’s words in mind and remembered the hope she had restored in my heart… I could feel better. I would feel better.

Stabilizing the thyroid takes time and apparently that’s all I had in 2012. Time to help my thyroid function while surviving everything else in life.

It can be a challenge to make it through a week, or even a day, when you struggle with hypothyroidism.

Somehow I continued to survive for a few months. We monitored the TSH numbers and they were improving. My number ranged from the upper 2s to the lower 2s until October 2012. By then, it was a 1.85.

I felt pretty good. Compared to how I felt the previous year, I was much better. In the back of my mind I thought, “This is it. All I have to do is take my Synthroid every day an hour before breakfast (for the rest of my life) and I will feel pretty good.”

I wasn’t the me before the thyroid symptoms started, but I was the new me. The one who could have a piece of her old life back. I just had to rest more, space out events, learn what it meant to take care of my body with new issues. I assumed this was my new normal and I guess I began to settle into a slower rhythm.

I was surviving. And I needed more rest than ever before.

On Small Steps Toward Healing

My regular doctor couldn’t fit me in soon enough. So I went to see a Physician’s Assistant, a lady I had previously seen for other health issues. This turned out to be a huge blessing and another small step towards healing.

I went in and explained my growing list of symptoms. I gave her a brief summary of my recent medical history. She immediately confirmed and agreed, “Yea, you have a thyroid problem.”

Somewhere along the way I had also discovered thyroid disease is on both sides of my family: aunts, grandmas, and cousins all struggle with it and take medicine. At that point, I thought that meant I was doomed to get it.

We chatted longer, and I probably took up more time than I should have, but I didn’t care. Here was a medical professional fully on my side. Those are the kind of happy moments a thyroid patient remembers.

The PA saw that I was taking levothyroxine, which is the generic for Synthroid. I asked, “Do I need a higher dose? What do we do next?”

She said, “We’ll check your numbers today. But I’m giving you a new prescription for Synthroid. With all your sensitivities, you don’t need to be on generic. The dose can vary too much between drug manufacturers.”

I felt a tiny bit better on the way home that day because she renewed my hope for healing.

On Returning to the Doctor

Four months after I had started the levothyroxine, I noticed symptoms were popping up again. The insomnia nights. The unstable appetite. Things just felt off and I wondered if I needed a higher dose.

I didn’t fully know what to watch out for as far as side effects of too much thyroid medicine. I knew how I felt with my underactive thyroid and no medicine. That lasted eight months before the doctor took me seriously. I wasn’t about to let myself feel like crap for months and months.

From the beginning I realized I had to learn what all of this meant — the hypothyroidism, the symptoms, the treatment — I needed to know in order to understand my own body.

I needed to be a well-informed patient and advocate.

Because when you have thyroid disease, you quickly learn to ask questions and speak up.

Sometimes that’s the only way to begin the journey back to health.

I decided I was the one in charge of moving me from sickness to wholeness. I had to be willing to take action and seek help when symptoms slowly reappeared. This also meant I had to pay close attention to my body and listen to any signals.

I kept notes all the time and carried them with me as I went to various appointments.

In the summer of 2012, I thought I was heading back into the land of the blahs. It was not good. I didn’t want to go down the spiral of symptoms again. I had just been rescued from the long, foggy season in recent months and I could not go back to that place.

I called my doctor to make an appointment. Returning was my only option. It wasn’t time for blood work yet, but I wondered if we could test early since I didn’t feel well.

On Waiting for Test Results

If you’re just joining me, welcome! I have Hashimoto’s hypothyroidism and I’m sharing my thyroid health story for Autoimmune Awareness Month. Read the beginning here.

After the thirty day trial with levothyroxine, I was allowed to stay on this standard thyroid medication. The next step was to wait about two more weeks and I’d go in for blood work. The doctor could order lab tests every six to eight weeks until my TSH number stabilized. From what I understood, that could take a while and I hoped my doctor would pay attention to the “correct” scale.

There is much disagreement in the medical world about what scale to follow and what is considered “normal” for TSH. I had already learned this the hard way, which is why I pushed to get my first prescription.

~~~~~

The first time I went to the doctor in the summer of 2011 I suspected my issues were related to my thyroid. I had plenty of theories, but my TSH number wasn’t “high enough to diagnose hypothyroidism,” according to my doctor.

The TSH was 3.91 and I had real symptoms. It was checked again in December. TSH: 4.80. And February 2012. TSH: 5.15. All of my symptoms still existed.

~~~~~

We checked my TSH in the middle of April 2012. It was 4.38. Going down. Slowly. But that was better than going up. I knew we were on the right track before my doctor did. He was starting to understand though. Maybe he finally realized I wasn’t making up the symptoms.

This thyroid issue was not just in my head.

I wasn’t going to the doctor every couple of months out of joy. I went back every time out of a kind of desperation. I secretly hoped the doctor could pull out a magic wand to make me feel better. That didn’t happen.

But the blood work gave us new objective proof whenever it was time to check the TSH. The test results showed my numbers had improved since starting the levothyroxine.

And subjectively I could tell him, “Yes, I am a little better.”

That was my answer. At least, for a time.

Spreading an Awareness for Autoimmune Disease

Dear readers,

Did you know March is Autoimmune Awareness month AND National Nutrition Month? I didn’t either until recently.

The longer I’m on this healing journey, the more I learn and the more people I encounter. There is a big community for those with autoimmune diseases, but sadly much of this is online. I’ve connected with many on Twitter and in Facebook groups and I’m getting to know these people. We can relate. We can understand each other, the symptoms, the diet restrictions, the struggle to reintroduce foods again, the blah days.

I have fewer people in “real-life” who fully get all of it. Sure, family tries to understand and several friends do listen well and pray me through the rough weeks. They gain a glimpse to how I feel by the stories I tell and the descriptions I give IF they ask and really want to hear the answers.

I’m pretty open about having thyroid disease and fighting to feel my best for the past 3+ years. I have made those “real-life” connections with people when we chatted and discovered, “Wow. You too? I’ve been on thyroid medicine for years.” At that point, we begin to compare notes and swap doctor stories or recipe ideas. And the sense of community grows a little.

To help spread the awareness for autoimmune disease, I will be posting much more of my back story with hypothyroidism. I want to share how it all started and how I got to where I am today — on a specific path to healing my body.

I’m dedicating Tuesdays and Thursdays in March to thyroid health. I will share my experience and I’d love for you to join me. Help spread the word this month and beyond!

More people need to know and the community can only grow larger from here. And that, my friends, is a blessing to those who are trying to heal and stay well.

To health and wholeness,

laura

On Waiting to Feel Better

I had reached my limit on all levels. Friendships were suffering because I had nothing left to give. And the things I loved to do stacked up and took over my spaces until I could find more energy. Seeing this overwhelmed me even more. I missed who I was before and I wanted to find that me again. At least this time I was actively doing something while I waited.

To those who knew me best, I constantly looked exhausted and smiled much less.

To the friends who asked, I shared I still wasn’t “normal” and it was getting harder to persevere.

To the leaders of my church, I finally confessed I needed prayer…for healing and strength.

I started the thyroid medication at the beginning of March 2012. The first week went by and nothing changed. I didn’t feel any better yet. I wasn’t expecting instant results. I knew it might take the entire 30 days so I held on to hope. Maybe I would notice improvement by the end of the trial month.

The second week came and I wondered, “am I feeling a little better? Maybe a hint?”

I didn’t want to jump to conclusions and have the doctor indirectly claim it’s all in my head. So I waited some more.

By the end of the month, I knew. I could definitely tell. Even if it was a fraction, my tiredness had decreased and my brain was waking up. This could only mean I really had a thyroid problem and the medicine was working.

I called the doctor to say, “Yes, I’m feeling better. Can we continue with the levothyroxine?”

He said, “Ok, for now. But we will monitor your TSH numbers.”

We had a plan. It was good to be in agreement with the doctor months after I first started complaining of mysterious symptoms. We could move forward and watch health return to my body.

On Waiting to be Heard

January is Thyroid Awareness Month and I want to share more of my story with you. If you missed the beginning, check out A Story of Seeking Answers and continue reading below.

I continued to go to the doctor throughout the fall of 2011. Appointments spread into the winter and the new year. I did not feel well. I wasn’t my cheery self and I had stopped reading, paused sewing, and put away any thoughts of scrapbooking in my free time.

I couldn’t focus or enjoy any of the activities I so loved.

I found myself staying home more and not reaching out to friends as much. If I did visit with friends, I could tell my brain moved slower, much slower. Words did not come as easily in conversations. Some started to notice and commented that I seemed “off”. I never struggled to talk before this season, especially with people who knew me best. We could chat for hours and I would come up with witty jokes. Not anymore. Any lengthy conversation or time with others wore me out. I’d have to rest and recover for a few days. That was not normal.

I paid attention to all these details over time. I wrote notes on how I was feeling because I wanted to remember. I needed evidence for the doctor, proof that what I told him was real. I did this for a while, hoping I would eventually find someone to connect the dots medically.

Weeks turned into months and my status barely changed.

February 2012. I made another appointment to see the doctor. I took my list of questions, detailed page of notes, and I prepared myself to plea with the doctor.

I was at a breaking point and I had to try again. Almost seven months had passed and I was tired of survival mode.

All I wanted to do was cry. There were so many moments where I could have cried and right there in his office was one. Because I constantly felt…lost, confused, frustrated, unheard…and I wanted a doctor to listen.

I sought to be heard that day. I gave my evidence and said, “What can we do? Isn’t there something we can try?”

He said, “Well, there are risks of bone loss and heart trouble with the thyroid medication, and there is no guarantee it will help you. But I am willing to write you a prescription for 30 days.”

Maybe I would start to feel better. I said, “Ok, I will try it and see what happens. I’ll keep taking notes on my symptoms and the foods I eat every day.”

The doctor said, “Ok. I’m giving you the lowest dose they make. We will talk at the end of the month. Call us with an update and we will go from there.”

I left the appointment with a glimmer of hope…thinking, “everything will be okay. I’ve waited this long. I can wait a couple of weeks or even the whole month.”

I just wanted my life back.

When I wanted to skip Communion Sunday

Last Sunday I didn’t want to go to church. I wasn’t sick. I had slept well enough the night before. The weather was clear. But I wanted to stay home.

This was not like me at all. I’m the one who would cry when I was sick and stuck at home as a child. That’s a whole different story though.

In my mind, I thought, “I’ll just go teach the four year olds at 9:30. Then I will slip out before the service begins. I can have an extra-restful Sunday afternoon, and my body needs it since I’m working to heal it.”

Excuses. Excuses. You’re probably wondering — Why?

What’s so different about Communion Sunday?

The first word: Communion.

My anxiety had been growing for a month…since the last time my church served communion. I was fine that time. Nothing had changed yet, but I knew the drastic diet restrictions were coming. I had researched plenty to understand nutrition plays a huge role in healing autoimmune disease. I just hadn’t realized how it would affect the way I took communion until the last Sunday I went up front for a piece of gluten-free bread and a sip of grape juice.

That Sunday it hit me, “I won’t be partaking in communion for a while.”

The question was, and still is, will I have to avoid this taste for just two months or is it a permanent requirement for my long-term health?

I didn’t skip Communion Sunday. As much as I wanted to run away from a hard reality, I found the strength to stay.

Part of my healing journey is being more than OK with who I am. I want and need to live in freedom as a whole person. And last Sunday, that meant staying at church and crying during the service. The tears came again right after church, but I didn’t care.

I felt better. I was real. I let myself grieve this loss, even if it is temporary.

I don’t have the answers yet and I don’t know the future. But this kind of freedom brings healing too. The kind that says, “I am broken. I am weak. Yet I am still strong.”

So admit those hard questions and be ready to let go. Hold on to the good things you still have, and wait for what is coming.