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Invisible Illness Awareness Week~ Seriously, Can You really not see it?

Invisible IllnessI have to say I am amazed. Are we so oblivious to those around us? Maybe it’s the lady in the grocery store, the one child on the bench who’s name is not yet called to be on a team in PE. It can be much closer, its your neighbor, your friend, your sister, or even your mom. Yes we can, and yes we are so oblivious. It’s all around us. Maybe it’s you.

We are talking about Invisible Illness Awareness this week. Some reading these posts really have never even thought or heard of such a thing. Don’t feel bad or guilty. That’s why awareness is needed. That is why after you read some of these posts you will no longer let your self be oblivious to what you now know.

Oblivious :

1 : lacking remembrance, memory, or mindful attention
: lacking active conscious knowledge or awareness

Some clarification on invisible illness. The title of my post today is~ Seriously, Can You REALLY not see it?
Yes these illnesses, diseases, conditions, you might not ‘recognize’ them on site by name. But I have a hard time with people not having a clue that ‘something’ is up.  Oblivious means- lack of mindful attention. I think we as a society have become so oblivious to those around us and seriously pay ‘mindful attention” to very little out of our circle or just plain out of our own needs.

Let’s take a look at an incomplete list of Invisible Illnesses… These are in Alphabetical Order
Allergies and Food In-tolerances, Arthritis, Cancer, Chronic Fatigue, Fibromyalgia and Chronic Myofascial Pain, Depression /Mental Illness, Diabetes and Blood Sugar, Digestive Disorders; Example IBS, colitis, Celiac etc., Eating Disorders, Ehlers Danlos Syndrome EDS & HyperMobility Syndrome GHS, Headaches, Migraines, etc., Heart Conditions inc Dysautonomia, Infertility, Lupus, Lyme Disease, Multiple Sclerosis, Neurological Diseases, Pain Management, Rare and Orphan Illnesses, Secondary Medical Issues, Sjogren’s Syndrome, Thyroid Disorders.

Some of these will sound familiar to you, others will not. All have lists of symptoms that would boggle your mind. A lot of these also run together, meaning once you have one, you can become more susceptible to acquiring another.

I learned of Invisible Illness over 10 years ago when I was on a treadmill and pretty much blacked out. They found nothing wrong. Two months later I found myself having some sort of attack while Christmas shopping at Target. I remember writing all my emergency info on a napkin in case I passed out right there, lost conciseness or just fell over dead. A trip to the emergency room brought no answers. It took 5 more trips to the emergency room that month, Dec 1998, including an ambulance ride on New Years Day before they finally nailed it as being extreme panic attacks. These were not the attacks you hear so many shrug off today about. All the celebrities and type A personalities that claim panic attacks! These were out of the blue, no warning, and with Panic attacks carrying with them a list of about 40 different possible symptoms, I would experience 90% each time. My body went into such a reactive state my blood sugar dropped to 30. (Hypoglycemia was ruled out) It has been quiet a journey dealing with the panic. I wont take you down that journey but know I never let it rule my life, but definitely played its role. I got a grip on God’s Word like never before. I learned about the battlefield in my mind and how I could fight and manage it. But STILL… they continued. I will mention here for those who do deal with panic/anxiety disorders of any kind that one of the absolute best books I have ever read is by Dr. Shipko, called,

Surviving Panic Disorder: What You Need to Know

You can purchase or read about it HERE. It is also a great book to lend out to family and friends who just can’t seem to grasp what you are going through.

The researcher in me could not settle without learning how in the world something so life altering could appear so suddenly. So I set out to find answers. Even back then I picked up several books on hormones and thyroid disorders as I noticed a very quick correlation with my hormones and my panic attacks. The panic attacks began to know no end and turned into generalized anxiety. I was dealing so well in my mind but my body was not following! I will fast forward here and focus on the not giving in and not giving up on what you know to be real although it might be invisible to everyone else. I was in forum after forum online reading from others experiences as our symptoms would be very similar. It’s actually my experience in those forums and the support and knowledge I gained that led me to opening Take Root and Write and Christian Women Take Root.

It’s amazing after so many different tests, blood work, heart tests, sonograms- everywhere, seeing both regular doctors, specialists and holistic, that no one ever tested for something so simple and something that effects so many. It was 7 years after my first panic attack and now I had a new list of symptoms. They had come on slowly but were now taking on a daily presence in my life. I was amazed when I started to check off my symptoms. I am going to include it, as it is the best list of symptoms for Thyroid Disease I have ever seen. The *’s represent the symptoms I was experiencing everyday for 2 years. Some might seem so silly to you, but when experiencing all of them, ALL the time, it’s not so silly.

Way Less stamina than others *
Way Less energy than others *
Long recovery period after any activity *
Inability to hold children for very long *
Arms feeling like dead weights after activity * (even after putting on make up or washing hair)
Chronic Low Grade Depression *
Suicidal Thoughts
Often feeling cold *
Cold hands and feet * (Like ice- I spent several times a day with my feet in hot water to warm them up)
High cholesterol *
Bizarre and Debilitating reaction to exercise *
Hard stools
No eyebrows or thinning outer eyebrows *
Dry Hair *
Hair Loss *slight
Dry cracking skin *
Nodding off easily *
Requires naps in the afternoon *
Inability to concentrate or read long periods of time *
Forgetfulness *
Foggy thinking *
Inability to lose weight *
Always gaining weight *
Inability to function in a relationship with anyone *
NO sex drive *
Moody periods *
Excruciating pain during period *
Nausea *
Swelling/edema/puffiness *
Aching bones/muscles *
Bumps on legs *
Acne on face and in hair
Breakout on chest and arms *
Exhaustion in every dimension–physical, mental, spiritual, emotional *
Inability to work full-time *
Inability to stand on feet for long periods *
Complete lack of motivation *
Slowing to a snail’s pace when walking up slight grade *
Extremely crabby, irritable, intolerant of others *
Handwriting nearly illegible *
Internal itching of ears *
Broken/peeling fingernails *
Dry skin or snake skin *
Major anxiety/worry *
Ringing in ears *
Lactose Intolerance *
Inability to eat in the mornings *
No hair growth, breaks faster than it grows *
Joint pain *
Carpal tunnel symptoms*
No Appetite *
Fluid retention to the point of Congestive Heart Failure
Swollen legs that prevented walking
Blood Pressure problems *low
Varicose Veins
Dizziness from fluid on the inner ear
Low body temperature *
Raised temperature
Tightness in throat; sore throat *
Swollen lymph glands
*sore feet (plantar fascitis); painful soles of feet

Stop the Thyroid Madness When I saw this list and marked what I was experiencing on a daily basis, I knew that the doctors were missing something. Hello! But they had check my thyroid already. My numbers were said to be good. No, not good enough. I love my doctor, she is actually a PA (physicians assistant) When I came in after gaining 20 pounds in one month I sat down and said, Alicia, I have been reading on my online forums about how important it is to get your antibodies checked for your thyroid. That the TSH that doctors actually gauge normal with is; first- out of date and second, not relevant if you have antibodies. This time we checked what anyone who battles a good amount of the symptoms above, should test for, and NOT settle for anything less. The tests were…
Thyroid Peroxidase Antibodies
Thyroglobulin Antibodies

Even though my TSH looked “ok” being at 4.0 it is still out of range in today’s Endocrinology Standards, although NOT recognized by all. (and I will add, FAR from optimal, BIG difference in being in ‘range’ and being ‘optimal’) My T-3 and T-4 frees were way off and I had both my Thyroid Peroxidase Antibodies and Thyroglobulin Antibodies come back high. I was diagnosed with Hashimotos. An autoimmune disease, where instead of antibodies protecting you as they are supposed to fight bad invaders, they are fighting my thyroid as an invader. Trying to destroy it. You notice I mention the Ferritin test as well, as that measures your iron storage. Mine was 7.  Normal/ Optimal range for menstruating women is about 70. I was anemic and this was contributing to the 12 hours of sleep at night along with a SOLID 2 hour nap during the day. I found the low ferritin to be very common in thyroid patients the more books I read and forums I searched. Your body is so cold, it interferes with the iron. My period only lasts a day and is light, I was not loosing iron that way nor through any other way. (had tests to make sure)

It was awareness through the internet that lead me to the answers I needed so desperately. As during my last year of searching, I began seeing the same symptoms in my then 12 year old daughter. Because I became aware and did not settle for anyone telling me nothing was wrong with me, I knew what to do with my daughter. Having the same tests done on her as well, her results brought the same diagnosis. We both take thyroid meds, she is on synthroid, I am on armour. We both also deal with hormonal imbalances and approach that naturally. We have our seasons of perfect balance and we feel as if we can do anything. Then we have our seasons where the symptoms creep in and we know our numbers have changed and need to adjust. It is a constant assessment of symptoms, test results and adjusting to the right amount of meds.

When I got my armour dose right, and my symptoms began to get fewer, I would look back, well, still look back and say, where did the last 2 years go? I literally slept through them. It’s only been about a year and a half since I have been in treatment. Since I have dealt with my thyroid disorder, I can count on one hand the very small panic attacks I have had. They are always at a specific time in my cycle. In my thoughts I go back to the very first book I bought about panic attacks and where they discussed the issue of Thyroid disorders contributing to them. I have my bloodwork from back then (as I keep ALL labwork and test, I have them faxed to me, and you should too) my thyroid was checked, well what they considered checked—- TSH only. I just wonder what would have been different if they would have done the full round of tests.

Just so happens as I am writing this post for awareness it has been a time of adjustment again. It’s amazing how much we take for granted. I have laughed lately at some of my friends who “tweet” with me and how they talk about coffee so much. With the panic, I quit coffee on day one! Ten years ago. With the thyroid disorder, man, could I use some coffee! Although I do not do caffeine, I do give myself the time I need when going through an adjustment. I get in a nap, I don’t knock myself so hard when I get behind or can’t seem to get on top of everything. I say ‘no’, that’s a biggie. Also a hard one. Right now there is so much going on in my head of what I want to do. Ideas, that are taking longer to unfold as I try to keep up just the everyday tasks. It tries to zap your inspiration, cause doubt and confusion. But it will not win, I am not confused, God is God! He is my rock and my fortress. In Him I live and breath and have my being. Who cannot be inspired by the creator of the universe? I walk by faith, not by sight. I wake up each day rejoicing whether my body feels like it or not.

I pray that you have your eyes opened wide. That you are not quick to judge those around you for actions or decisions you might not understand. I have always told my daughter that you never know what someone is actually going through. Only they do. Give them the benefit of the doubt. Reach out instead. Don’t be oblivious to what might be happening right under your nose. Be mindful that there are people all around with situations, conditions that you don’t understand. You can’t unless you are one of them. But you can take the time to to give them the time, space and support they need. And by all means, if someone close to you does live with an invisible illness, do the very least and educate yourself about their condition. There is NO excuse for not educating youself with so much information at your fingertips.
The sign that I added above… Stop the Thyroid Madness. That site saved my sanity. God used it in a huge way. It is HERE.

I am doing a “Shout Out” to my hubby, Jose. As it has not been an easy ride these last 10 years. He has supported me and what he couldn’t understand along the way, he just walked with me. I can’t imagine doing it alone. So reach out! Be Mindful! Don’t live in a world of Oblivian!

**Some posts I have written that go along with this one are…

That Hand on the back of my shoulder
…Finding my way Forward

This was originally written and posted over at Take Root and Write

3 Responses to Invisible Illness Awareness Week~ Seriously, Can You really not see it?

  1. I came across your blog in my search for a list of invisible illnesses as I’m attempting to raise awareness in my community. I was hoping, but not expecting :), sleep disorders would be listed. No big deal, but since it’s not listed, I thought I would share that I have lived with a sleep disorder called narcolepsy since 3rd grade. I’m now 35. With this disorder the brain is continuously, without breaks, trying to pull the body into sleep. It’s quite debilitating living with a brain that never fully wakes up and the body never gets enough deep, restorative sleep to repair the organs in the body. This leaves the one suffering with many health issues the longer they live with it. Thank you for the list 🙂 I found it highly beneficial!

    • Julie,

      Have you tried Xyrem to treat your Narcolepsy? It has been a miracle in my life. Your body will get enough sleep and your brain will be able to wake up.

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