How I Went from Thyroid Advocate to Activist

PIPJFK

Warning a bit of a rant ahead!

Sorry I haven’t been on here much. I’ve got this new hobby. I’ve become a political activist. Some of you know that I have always been very active in advocating for better care for the thyroid community. Getting information out there to the wider community about what we go through is one of the reasons I started this blog as a matter of fact. Secondary was to educate those of us WITHIN the community who do not seem to have the information due to our doctors being sadly out of date, or just not caring enough to do their jobs of keeping us informed. The last year I’ve been doing more and more research into our health system in the US and finding out exactly how screwed up it is compared to a lot of other countries.

You all have no idea how messed up ours is compared to half of the civilized world until you start talking to people outside of the world. Just no idea. We’ve been lied to. They tell us that other countries have it worse, but really it’s the other way around. We have all this wealth and a really crap health system. We pay the most of any country for our health and get the least in return. The more I researched the more angry I became.

Then I started doing research into other areas that affect our health, like our air and water quality. That just made me even more angry. I think my blood pressure medicine has had to be doubled in the last few months! I wish I could unlearn the things I’ve learned. I really was hoping the things I learned weren’t true, so I went to multiple sources, to make sure I could get as wide a picture as possible. No, from as near as I can tell, most of the places I’ve lived in my life there has been a decrease in the safety of my air and water sources and an increase in thyroid disease and cancers in the communities that I’ve lived in. Approximately a third of the people I went to high school with right now have thyroid disease and another quarter have dealt with some form of cancer either with the thyroid disease or alone. What the heck is going on here!

So, that’s kinda how I became a political activist. I’m tired of being sick, and I’m tired of our health system being broken. I’m tired of our air and water being poisoned. Flint, MI is still dealing with poisoned water months after the story broke! While the people who did this to them have not been punished.

Our health care system is anything but , some of my friends make just enough they don’t qualify for help with insurance, and can’t afford to get insurance, so they haven’t been checked with their thyroid disease for over a year. One of my friends finally got her thyroid checked after she had a seizure, passed out and had to be taken to the ER a few months ago! We lost another thyroid person because she couldn’t afford to get her thyroid checked because her insurance didn’t kick in until she met $5000 out of pocket, so her Graves’ disease wasn’t kept in check, she had a heart attack and died. I keep hearing stories of people sick and dying from the thyroid community because they can’t get regular care. It breaks my heart and makes me more determined that we need to band together and do something!

A couple of months ago I came across this petition: Petition to Unite Progressive Parties

I loved what it said. I tracked down the person who wrote the petition and I joined her Facebook group. The Progressive Independent Party, this was about a week after she launched the petition, the page had about 1000 people at that time (today it’s about 2 months in and about 8000). I spoke with her. This lady is a single Mom, who has Hashimoto’s thyroid disease, who has survived brain cancer. She is also from one of those areas that I grew up in that is prone to cancer and thyroid disease. She has decided that it’s time for everyone who is sick of the Establishment taking advantage of us to band together and raise our voice to stand up together and unite. So for the last 6 weeks, that has pretty much been what I have been doing. My thyroid advocacy, has translated to advocacy on a much larger scale. Now I am trying to advocate for healthcare that works for all, getting measures pushed through to clean up the air and water, and much more, using the power of social media and people power behind it.

You may call us dreamers, but I for one am sick and tired of not doing anything except getting more sick and more tired! If you would like to join us please check out our website with all the information on what we are trying to accomplish over the next several years www.ProgressiveIndependentParty.org 

The Connection Between Thyroid Disease and Childhood Trauma-Guest post!!

life_beyond_chronic_pain_front_cover_jaime_a_heidel_500_x_800-1100x0

 

Thank you so much to Jaime this week for her wonderful blog post! -Britney Check out her book  Life Beyond Chronic Pain

 

by Jaime Heidel   TRIGGER WARNING-CHILD ABUSE DISCUSSION

Living with thyroid disease is so frustrating. Your tests say your thyroid is functioning “normally”, but the sweats, shaking hands, and weight issues clearly tell a different story (not to mention the other 40+ symptoms).

It seems like no matter where you turn, you end up with more questions than answers. For example, how did this happen to you in the first place?

It may surprise you to know that there is a strong link between childhood trauma and thyroid disease. The reason you haven’t heard about this from your doctor is because she likely doesn’t know about it yet.

But that’s no reason to keep you in the dark. There is a good amount of scientific evidence linking childhood trauma and thyroid disease, and the more you know about your condition, including its possible origins, the closer you’ll be to finally stabilizing it.

Women With PTSD-CSA at Increased Risk for Thyroid Disease

According to a study published in the Journal of Biological Psychiatry, women with post-traumatic stress disorder associated with childhood sexual abuse showed “significant elevations in Total T3 and the TT3/free thyroxine (TT3/FT4) ratio, the FT3/TT3 ratio.”

There were also “modest reductions in thyroid stimulating hormone” among PTSD-CSA women as compared with women who were not diagnosed with PTSD-CSA.

Higher levels of T3 are most commonly associated with Grave’s disease, toxic nodular goiter, and liver disease.

The ACE Study Confirms Link Between Childhood Trauma and Disease

The ACE Study is a collaborative effort between the Centers for Disease Control and Prevention and Kaiser Permanente’s Health Appraisal Clinic in San Diego. It is one of the largest assessments ever done on the correlation between childhood mistreatment and chronic health problems in adulthood.

The questionnaire has only 10 questions, and the higher you fall on the scale, the higher your risk of developing a chronic disease.

Those with a high ACE score may have more than one chronic condition. For example, you may be living with Grave’s disease, celiac disease, and PTSD. Or, perhaps you’ve been diagnosed with depression, chronic fatigue, and hypothyroidism.
Virtually any combination is possible as excessive and prolonged stress interferes with healthy immune, metabolic, and neurological function.

Disease Development Could Be Survival Instinct Gone Haywire

According to a study published in the Journal of the American Medical Association, exposure to trauma has the potential to reshape the biology of a young child during critical developmental years.

Since nature causes us to automatically adapt to whatever type of environment we are living in, adverse experiences can cause the developing child’s system to wire itself for a dangerous and unpredictable world. This means your body may be programmed to overreact, leading to immune system, endocrine, and neurological dysfunction.

Unfortunately, it is often difficult for medical professionals to make this connection because it can take years (if not decades) for early traumatic experiences to manifest into physical or mental disease.

40 Percent of Women Physically Abused in Childhood Have Higher Odds

According to a study published in the Journal of Aggression, Maltreatment & Trauma, “[E]ven after adjusting for 14 potential explanatory factors, women who had been physically abused in childhood had 40 percent higher odds of thyroid disorders than their non-abused peers.”

Over six decades of research has shown a strong correlation between stress and thyroid dysfunction. It has only been in the past 10 years or so that we’ve finally been able to narrow it down further and truly get to the root cause of many chronic illnesses.

Although there’s no way to turn back time, these findings will be of great benefit for generations to come. This means our children, their children, and so on, can lead better lives through early intervention and a more holistic approach to development.

If you have ever felt that your chronic illness is somehow your fault, now is the time to let that go. Learning that childhood trauma could have played a role in your thyroid disease can empower you by giving you a root cause and a place to begin your healing journey.

In my book Life Beyond Chronic Pain: The Step-By-Step Guide to Healing Chronic Illness Naturally, I delve a bit deeper into the connection between chronic disease and trauma. I also give you the tools you need to put your autoimmune disease into remission.

Even if natural treatments have not worked for you in the past, this guide can be your key to finally healing your body, mind, and spirit.

life_beyond_chronic_pain_front_cover_jaime_a_heidel_500_x_800-1100x0This guide leaves no stone unturned, and puts you, the individual, where you’ve always belonged—in the center of it all.

Sources:

http://www.ncbi.nlm.nih.gov/pubmed/15866559

http://www.ajpmonline.org/article/S0749-3797(09)00506-6/abstract

http://www.npr.org/sections/health-shots/2015/03/02/377569413/can-family-secrets-make-you-sick

http://www.ncbi.nlm.nih.gov/pubmed/19491187

http://www.tandfonline.com/doi/full/10.1080/10926771.2013.803508

About the Author

Jaime A. Heidel is a professional freelance writer with a passion for natural health and wellness. After being sick from birth to age 22, a naturopathic physician finally gave her a reason for her lifelong mystery symptoms: Gluten intolerance.

Since discovering the profound connection between food intolerance, nutrition, and health, Jaime has made it her mission in life to help others struggling with chronic pain and autoimmune disease. She understands what it’s like to have an invisible condition that others don’t take seriously, and the emotional and psychological toll it can take on a person already suffering.

Jaime is a Connecticut native who has been writing since she was old enough to hold a pen. When not glued to her laptop, Jaime can be found hiking in the woods, haunting thrift stores, having tea or lunch with a good friend, getting down on the dance floor, or buried in a good book.

It’s OK To Give It A Rest

Sometimes life throws a curve ball at you. Things go out of control. With me it was my health. Other than thyroid related issues, I also have asthma. Let me tell you about the last few months in my life. Over the winter my asthma decided it was ignored long enough. First it made itself known by showing up with a bad upper respiratory infection around November. I got that taken care of and was still not feeling well. Work started getting busier as well. I work part time in retail and as most of you know the holidays are Retails’ most busy time of year, which did not allow me much time to take care of myself.

When you combine not being able to take optimum care of yourself, plus lungs not being at their best, plus a lot of people indoors all sharing their germs together in the holiday spirit things go from bad to worse. Along about December my lungs decided it was still not happy and decided that upper respiratory wasn’t enough so Bronchitis here I came. That netted me a few days off work, which was literally all I could spare. We were able to get one person to cover my schedule so I could get at least that much off work and take some of the time I need to just stay in bed, take my medicines, supplements and lots and lots of water and healing broth and juices. I limped back to work, but this time with a cough that never quite went away.

Coughing on through the New Year, and still winding down Retail’s needs, I was unfortunately still unable to keep up with blogging or any of the other things that I love to do, so this little project was still put by the wayside as well for a little bit longer. One day middle of January, as things were finally slowing down back to my regular part time work status that I’m used to doing, I sat down glad that I caught up enough to finally have a lovely 3 day weekend I could get caught up with trying to get over this nagging cough. What is this? All the sudden I cannot get warm. I am shivering terribly, and my face feels like it is on fire. I go and grab the thermometer. 101.5 F. (definitely fever) Ummmm, that isn’t good. Go grab some water, some Tylenol and go get into pajamas and put myself into bed. In the morning I’m worse, and I have this horrible deep booming cough that feels like someone small has crawled in there with little knives and is working away every time I cough. As the day goes on I keep checking my temperature and it stays around the 101.5 degree Fahrenheit mark. I feel pretty much like death, but I am convinced I have the flu that is going around, so I stay in bed, drink lots of liquids and take vitamin C.

Next day is Saturday. I stay in bed all day. That afternoon, I start coughing up pinkish stuff. That rather alarmed me, so we went to the emergency room since it was past doctor office hours to get it checked out. After several tests including a chest x-ray found out I had pneumonia. Apparently all those lung issues I had had over the last few months had been building to this. They sent me home with instruction to take the medicine they were giving me, and to stay in bed, rest as much as possible and again stay in bed, drink as much as possible and then again stay in bed. I did not emerge from my bed except to visit my own doctor for a checkup for 10 straight days. I will tell you, do not get pneumonia, it sucks. I’ve  had bronchitis several times and I thought pneumonia was just a little worse version of it. No, Bronchitis is like a slightly awful, congested feeling in your chest. Pneumonia is fire breathing, knife wielding demons living in your chest, who are constantly sticking their little on fire knives into your lungs every time you move, breathing or cough, or even think of doing any of the three.

Now after I got done with the worst of all this, then the guilt set in. I hadn’t done this blog. I hadn’t worked on my website much, or twitter, or any of the other projects that I love to work on. I neglected my friends, I hadn’t talked to family much. I felt so horribly guilty. I’m telling you Fellow Thyroid Warriors, this is normal, this is going to happen to you also. You are going to get knocked down and like me, you are going to need a pep talk after. I have to tell myself this every time. It’s ok to give yourself time to rest. It’s ok to take a break from things. It is ok to take time to recover from trauma, from illness, from heartbreak, from whatever it is that messed up your routine. However long it takes.

The main thing is once you have taken however long you need, then you need to ease yourself back into things. I started off by getting back into my thyroid group first. Calling some friends and doing a small get-together. Emailing some people I hadn’t talked to in awhile.  Then working on the http://www.WarriorButterflies.com website. Now I’m trying to work again on this blog today.

Do not despair, whatever you are going through, you will get through it, and at some point down the road, you will find that you will again be going on up the road making progress towards some other goal again. Keep on fighting fellow Warriors!

 

Catch Britney on Twitter @warriorbtrflies
http://www.WarriorButterflies.com

“What did you say?” CAPD and the Thyroid

Getting a proper diagnosis is key, finding an Audiologist who deals with this specifically is the only way to find out if this is an issue for you.

Warrior Butterfly Britney

For most of my life I’ve had some issues with understanding the spoken word. I always made sure to sit in front of the class in school, and I got pretty good at lip reading. I had my hearing tested at school several times and it always came back that I had perfect hearing. You sit me in a sound proof box and send tones to me, I can hear them all day without a problem. However, you put me in a crowded or noisy environment and I may not recognize my name being spoken. I knew something was wrong, and finally a few years ago I found out what it was.

I have something called Central Auditory Processing Disorder or CAPD. In my case Adult CAPD. CAPD is basically an umbrella term for a variety of disorders that affect the way the brain processes auditory information. Put in simpler…

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Adventures in Acupuncture Part 2

To see first part of article go here:

After my first visit with acupuncture, I decided to go try a different acupuncturist. The first visit wasn’t bad at all, but it wasn’t quite as comfortable as people who get this done regularly told me it should be. So I went for session with this new person. Mateo at Community Supported Acupuncture in Louisville was a whole different ballgame from my first experience.

First he had me fill out about an 8 page questionaire. Not only medical history and current symptoms, but diet, allergies and more. The first appointment lasted about 90 minutes, with 45 of it us talking. We talked about my lifestyle, things that stressed me, and went over every ache and pain and weird symptom I’d been having, not just the headaches. He told me that more information is better and knowing all the symptoms, not just the main one would help him to help me.

Again I took off my socks and shoes and my watch and glasses. This time I sat on a comfy table with a soft blanket under me and a pillow under my knees. As he did each acupuncture needle, he would check back with me. “How are you feeling now?, Any change here, or here?” He said he adjusts what he’s doing by how my body reacts to each acupuncture point. The experience was very comfortable and very interactive, with him adjusting things as needed, for about 20 minutes. This time I felt almost nothing, maybe a split second occasionally, but rarely even that. I was left in a room with the needles to relax, given a small bell to ring if I needed anything and got to listen to soothing bell tones playing. I almost fell asleep.

I have had three sessions now. I can report that they seem to be working. After each session is done, I feel energized, like my body is buzzing with newfound energy. For once it feels like a healthy boost of energy, not the nervous kind I’m used to having. I usually have a reduction in pain and tension, so far each session has seen the reduction lasting a little longer each time. First session I felt better for 24 hours, after third session it was up to 3 or 4 days of feeling a lot better. The best part is I feel each time like a weight has been lifted from me. I’ve been having this headache for almost 6 months straight now, and never realized how much it was weighing me down. To have relief from that for a day or days, is amazing.

I’m told by people who have been having acupuncture for years that if I have the right person doing the treatments and I am someone who responds well, I will eventually get to the point where I only have to go in occasionally. The less issues you have healthwise and the less time you have been having them, the more quickly you heal and recover with acupuncture. I’ve been dealing with autoimmune, thyroid and asthma, as well as headaches on and off for years, so it may take me a bit longer to get truly better. For now, having temporary relief without drugs, and the boost of energy is a wonderful boon to my week. I’ve not only had relief from my headaches each session, but we’ve also been able to work on general fatigue levels. I also broke my finger and he’s helping with pain management with that as well as speeding up healing for me.

Mateo runs the Community Supported Acupuncture in Louisville, KY. He is running a wonderful program there. He has a sliding scale so that people can pay what they can afford for treatment, making it affordable for most everyone. He also has a community acupuncture day on Fridays, supported by donations where people who normally can’t afford it at all can come in once a week and get acupuncture in a group setting. What you pay doesn’t affect your treatment level  either. So far he’s been a wonderful caring person who genuinely listens and does his best for his patients. If you would like to help support this cause or are in the Louisville, KY area and would like to check his services out, go to http://www.csacu.com for more information.

Update: Had a new thing tried today. He used these little teeny needles called press tacks after my session was done. Basically put one in each shoulder blade on my back with a little flesh covered bandage over it to keep it in place. He said he wants to see if this will help reduce the tension in my shoulders by keeping it in until it either falls off on it’s own or when I see him beginning of next week. Here is a picture of one of them. I couldn’t feel it go in and I still can’t feel it. I will try to do an update later to see how it worked.

You can check out Britney on Twitter @BttrflyBritney, on the websites http://www.WarriorButterflies.com or her blog at http://www.ButterflyNationProject.org

Because You Had a Bad Day


I’m having one of those bad days that has turned into almost a bad week and maybe a bad month. My brain is functioning in fits and starts and reminds me of an old car that doesn’t have all cylinders running at the same time. You know the kind, you get in and hope that it starts up,  and just maybe, manages to get you to where you are going, BEFORE it completely dies and strands you by the side of the road. Those of us with chronic illness and thyroid disease know about these sorts of days.

It’s hard to explain to someone who doesn’t have a chronic illness about days and weeks like this. It’s not always something you did or didn’t do that causes it, or at least nothing you can always pinpoint as the cause. If you are lucky it will last a day, or a few hours. For me the last month it’s been intermittent. I’ll be ok for a few hours, then it will feel like a large animal is sitting on me draining my energy and making me feel weak. Then I’ll be down, for an hour, or the rest of the day.

I can go whole months without one of these days, where I can go and do things, as long as I pace myself, almost like a normal healthy person. It’s always in the back of my mind like some sinister villain, lurking, waiting for that chance to take you down, and make it be the worst possible timing. You are going to a wedding? Time to strike you down for a day, just the day you need the energy. Oh, you want to take care of a sick loved one? It will wait for you to go two or three days full speed ahead, and then as soon as you slow down for a second, BOOM, down you go!

The worst parts of this is the brain fog during these days. Things that you KNOW how to do, suddenly you forget. What’s my name? What’s my password, where do I live? Things that you have engraved into your mind are suddenly shrouded in fog. You start to forget basic things, plans, appointments, tasks and more. People get mad because they feel you just aren’t paying attention. What they don’t know is you couldn’t concentrate right then if your life depended on it! It’s not from lack of trying either. The more you try to grasp your mental abilities back, the more it slips thru your fingers. Very frustrating, when you normally are a fairly together type of person. For someone who tends towards Type A, it’s devastating.

When you have a few of these you start doing game plans. Notes go everywhere, on your calendar phone, on your computer, little yellow notes all over your house. Medicines and other things go in specific spots in an attempt to make sure you can remember to take what you need, so you don’t get worse. You enlist other people to help you remember. It’s the worst feeling out there. You have gone from competent person to idiot in minutes. You have no idea when or if it will get better. I’m here to tell you, it will eventually get better again, it just may decide to play with you for awhile before doing so.

Hang in there, I know mine will get better and so will yours!

Check out http://www.WarriorButterflies.com site for great thyroid related info, more blogs, events and recipes.

Or Follow Britney on twitter @BttrflyBritney