Blog Talk Radio Interview

Hi friends…today I had a follow-up radio interview to my previous interview that talked about Living with invisible diseases.  Today the talk focused on how I was able to move forward from all that pain, and start getting back to the life I thought I was going to be living.

What is Blog Talk Radio anyway?

BlogTalkRadio is the online radio network that allows users to host live call-in talk shows with unlimited participants using our free podcast recording tool. No software to download or complicated audio equipment.

I would love for you to listen to this quick show!  The Magic Happens “Share the Wealth” with Kellie Fitzgerald as hostess.  The interview went so well again that Kellie has asked me to come back for an even longer talk next time because we both feel that living with invisible diseases does NOT need to be hidden in some dark, dusty corners and spoken of in whispers.  No.  We both understand the pain of inflammatory diseases and what that brings to the table when people think “You look well.”  To be honest with you, I don’t remember what I said last time…but it was painful I know.  Raw.  Real.  And me.  Here it is:  Older Blog Talk Radio Interview  <<< so you can see the difference.

Thank you for always being here with me!  Namaste my friends.

HappinessHere is the link to 4 Weeks to Wellness.  I appreciate those of you who have already signed up and are giving me such great feedback after listening to me this morning!  You can leave a comment on this post if you would like!  Also see the work with me tab at the top of the blog for more!

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Motivational Monday…right action

So what do I mean by “right action”?  I want to start out with this little introduction:

Ethics (or Moral Philosophy) is concerned with questions of how people ought to act, and the search for a definition of right conduct (identified as the one causing the greatest good) and the good life (in the sense of a life worth living or a life that is satisfying or happy).            The word “ethics” is derived from the Greek “ethos” (meaning “custom” or “habit”). Ethics differs from morals and morality in that ethics denotes the theory of right action and the greater good, while morals indicate their practice.

In yoga, when we have discussed “right action”, it allows us to make the right choice for now.  In that moment.  I am quite literally doing what feels agreeable to myself in that moment.  Whether it is to hold a pose longer, to try the harder variations when the teacher says to move on, or to listen to my body if I feel I am not quite ready to move forward.

The other night, I was reminded of how far I have progressed in 5 months.  During class, I didn’t take a certain pose to the last possible variation.  I was afraid to try it because I wasn’t quite sure of the placement of my arms and shoulders…and how people were moving forward.  There are times people appear to flow effortlessly into the final pose.  You know how the teacher says “You are in the pose now, but if you want to move forward…”, well I do want to move forward.  So, after class I asked how the pose looks as you are moving into it.  Two of my friends were there and are able to move on so they showed me this pose Bird of Paradise.  I was quite surprised when one said to take the washcloth, and try it, and I actually got my shoulders right.

Well, let me remind you if you are new, way back in the past blog archives here, you will read about months I couldn’t move my shoulder and how manipulating my shoulder-blade at all was almost impossible.  So when I am in yoga, I don’t exactly always allow my right action to move forward as I am somewhat blocked by memories of pain.  Whether that pain was brought on by the flare up of Epstein-Barr Virus, Hashimoto’s, or fibromyalgia, I no longer care.  My “habit” if you will, was to stop because of intense pain, but the memory of it is still there.  My new habit, or right action, that really aligns with my practice now, is to stay after yoga, ask about that “hard” pose, see how it’s done, and move forward at my own pace.

Live it

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The yo-yo mood…

So it just takes one thing…just one for me to start my yo-yo mood.  The other day, I was doing whatever random things I do on the computer.  Mostly making quotes for a few pages I run, and a friend sent me this article in a message called It’s Not Fibromyalgia.  I read her message and was surprised that she too suffered…but when I started reading this post, my head went to the place it goes to when people write about their experiences.  It kind of goes like this when people talk about how bad it is living with pain…I hear you sister.  I understand this.  It sucks, but damn this is depressing to read in someone’s voice other than my own.  Do I sound like this?  Crap. This is messed up.  Sigh.  More depressing things I have been through.  I could be her…she could be me.  Wait.  Wait a minute.  She just said something I need to hear.  Someone actually listened to her.  Hold on and back up to that part because the rest is the same as my life.  Except this part.  This part where she finds HOPE. 

So I get to the symptoms, you know the part where invisible diseases can’t be seen except for the fact that I have lots of those symptoms…and doctors don’t really know what to do…so I kind of stopped talking to them about what’s going on.  And I get to the part where she prayed she had this thing because it actually explains something.  Black mold.  Wow.  Who knew?  Well, obviously someone did, but not anyone else most of us have ever come across in our long line of 18 different specialists.  So I messaged my one advocate in this fight…Dr. Marion who I have written about.  And she says yes.  Yes we can do this test.

For those of you who might be new, I gave up on regular doctors after getting diagnosed with fibromyalgia by a man who was a nervous wreck and a top rheumatologist in the area.  He said he understood why I wouldn’t want to be on pharmaceuticals given the side effects of the “medicines” and the possibility of a liver compromise with hereditary hemochromatosis (see my tab at the top about that genetic disorder).  Not to mention the other possible complications with those “drugs”.  I decided to go all-natural using plant based phytotherapy (see my tab Vitalize You at the top).  So that brings me to where I am.  No doctors listen to my intuition.  None.  I know for a fact that something deep down has made so many things spin off…and it’s only a matter of time before we find the link.  So if this isn’t it…we keep going.  But it’s one more thing to cross off.  I will let you know what happens.

Difficult times

Hello new friends…

Hi friends, if you are new over here and want to read my story, you can use the side button to go all the way to some of my first posts.  If you want to really “hear” my story, the recording of the Talk Radio Blog show is on the post before this one.  It’s your choice.  I know it sounds long, but I talk about invisible diseases as pertain to me, so it might be interesting to you.  Lastly, I use a method of clean eating…no processed foods, no fast food, not white sugar, no flour, etc.  And supplements to stay healthy.  See the tab on the blog here called Vitalize You and it basically tells you just a few of the products I use.  I opted not to be on Lyrica or Cymbalta due to my research.

The road to wellness…

Next up, I will be extremely busy with my new yoga teacher training classes and more to come on that I’m sure.  I am using these methods instead of “traditional” and so far I have lost 18 pounds and gone down 3 sizes just from getting rid of the toxins that my body was reacting to with autoimmune.  I have gotten rid of the bloat and the IBS symptoms I used to experience from food “attacking” me.  I still have my bad days…as does everyone, but I am making progress.

I also have a tab at the top of this blog explaining how I work with clients…so feel free to read that as well as my “About me”.

Feel free to message my FB page Vitalize You with supplement/weight loss questions.

aspire

I hate stress.

I don’t even know how to begin this post.  I am tired of being tired.  I’ll start there.  17 years.  Seventeen years.  Maybe it doesn’t sound like a long time.  I don’t know. Skin that burns in the sun, genetic blood disorder that causes organs to fail if iron levels get too high, autoimmune disease that causes food to act like tiny attackers as well as a host of other issues, virus that flared every bone in my body to pain, and then finally, the diagnosis of perpetual pain without a cure.

So tonight, my invisible disease friends, my brethren who look young, happy, normal and perfectly fine on the outside, but are dying on the inside daily, I wish you patience.  Because I know that I need it in my life and lack it.  I lack the ability to find anything remotely nice to say some days and can’t seem to help it.  Today is one of those days.  It is one of those days I wish everyone I come in contact with, I could touch like some sort of cool X-Men power and they would feel what I feel.  Everyone.

People who sound frustrated with me because of my questions don’t realize that I have to plan everything out according to my level of pain.  I have spent the last year weighing what was most important and trying to do that first.  I would like them to know how I feel on any given day.  People who ask me questions even though I have explained everything and sent them copies of things to read, yet ask me the same thing, they need to know that stresses me out.  Lastly, people who don’t have their stuff together, yet expect me to.  They stress me out.

This ridiculous rambling tonight was brought on by the letters W, T, H.

Suck it up

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The Thief of my Youth.

The Thief…

I remember when it first started. Old age, I thought, was a bitch. Little did I know that it was not, in fact, normal aches and pains. The first sign was when my shoulders started tensing up. They hurt so bad I could not cross my arms in front of me. Each day I would get up, put on my “happy face” and work a full day with 18 tiny people staring at me. I sang songs, songs about being happy. I had to force the pain down each and every day. Doctors couldn’t help me. It was just a flare. Bursitis said one. Arthralgia with a question mark wrote another. Cortisone shot said yet another. So I agreed. I had the shot and was in the worst pain I have almost ever felt in my life. It froze my shoulder up even more and then I cried each time I moved. I had to prop my arm on a pillow that night. I couldn’t even change out of the clothes I was in.

Over time, the pain moved to my spine. It started at the base of my neck and went down until I could feel every single vertebra in my entire spine. I was never aware of my bones before. They were simply there. The pain radiated out to my shoulder blades. I became angry and more distant with people. I was coming home from work and just withdrawing into my own shell. I would put blankets all over me because I could not get warm. I had heating pads on my back and shoulders. I’d try to do things, but simply couldn’t function after working all day long.

Whenever I tried to sleep, I could feel the bones. I would toss and turn and try to get comfortable. By the time I got to sleep, my husband was bringing me coffee. Coffee was the only way to get me up in the morning, and yet it felt like I had just gone to sleep. The cycle was horribly draining on my well-being. Not just physical, but mentally as well. There was not one person I could tell this to. Not one. Do you know what they had called me at work? Mrs. Happy. I was Mrs. Freaking Happy.

I’d alternate between praying and being mad at God. He knew what I was going through. He knew, and yet there were no answers. None. One day a co-worker slapped me on the arm and I almost slapped her across the face for touching me. Yup. I did. It took all the self-control I had to say through gritted teeth “Never, ever touch me again.”   We were not particularly close, and she had a habit of thinking things were funny and slapping my arm like I agreed. The only thing I thought was funny at the moment was watching her face as I explained how much what she did hurt. Yes, it wasn’t nice, I know.  Pain doesn’t care.

Around that time I realized I couldn’t work around people and keep up appearances. That’s when a plan starting forming in my head that I needed to work on getting better if such a thing was possible. The pain, fatigue, and doubt about whether I would be able to hold down a job with my amount of pain wore me down. Every night I would cry. If I wasn’t crying, I was pretending I was fine…until I started getting sick to my stomach almost every single day. At that point, I could no longer pretend I was fine. Food was making me violently ill and I had not been allergic to any food before in my life. A thief came in and stole my youth. I looked like a 20 something year old healthy adult with the body of an 80-year-old woman on the inside.

This was how my story started, but by God it wasn’t how it was going to continue.  If this sounds like you, please read more under the search term Health.  If you want to start tiny baby steps towards your own change, check out 4 Weeks to Wellness.

 

Pain

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On my ever changing life…

I was minding my own business.  Okay, I might have already been feeling a tiny bit sorry for myself, but it’s because I am tired out and I only managed to do one errand today…but anyway, still minding my own business.  When someone posted this blog link hereWARNING:  if you have chronic illness, it might depress you even more.  JUST SAYING.  And then I realized…I had hope.  I have a plan.  I help people already.  So take THAT depressing article about that which I can’t change, but can make better.

Anyway, what I have come to realize is that through helping other people I have always felt better.  No matter what.  I think that’s why I became a teacher.  I want others to have hope.  Feel better.  Like themselves.  Have self-esteem.  Do the things they THINK they are incapable of doing.  My business has provided me with that platform.  My Facebook page for my quotes has provided me with over 15,000 fans reading my blurbs…wish you all would come over here every once in a while…just saying.

My friend with cancer right now is in the same boat I am in, but it just looks different.  We are natural helpers.  We want others to succeed, so because she has to take another year off of teaching, she is a bit down as well.  I understand.  It’s a HUGE decision to put your health first when you are a giver.  You are suddenly left with feelings of “Well, now what?  Life was supposed to go this way.  Stay the course life.  STAY. THE. COURSE.  WHY ARE YOU NOT LISTENING TO ME??”  Seriously life.  I need to give you a good ass kicking.

The bottom line is this…the course changes.  You change.  You move forward…not backward.  No matter what it feels like, you are not the same person you were before this lesson arrived.  You have lots of wonderful good things to offer the world, so don’t sell yourself short.  Don’t. 

SurroundNote:  Since the post was published, Aimee has created an online catalog to help others who, like her, are tired of this B.S.  We can make our lives better, the first step is just believing.  If this resonated with you at all and you are ready to try something new, check out my online personal coaching.

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War on me…

The invisible war inside me threatens to take me down.

I suspect that if I were to take the posts about my food issues and put them together in a book, it would be helpful to many people.  I will briefly try to explain what has happened to my body as best I understand it.  When I was born, I was born with the C282y gene that the Irish people needed.  It not being the potato famine and all that, it continues to function in the way it would have by holding onto iron.  Basically, it is thought that this protein functions to regulate iron absorption, and mine is “broken” so to speak. Luckily, the porphyria cutanea tarda kicked in and gave me blisters all over and turned my urine dark.  Warning!  Warning!  Anyway, you can see other posts about all that.  Just use the search button.

So we have a kid loaded up on iron, fed by well water, eating collard greens like they are going out of style and taking her Flintstone vitamins.  Anyone see what’s happening?  Yes, you over there.  Poisoning myself.  That would be correct.  Because my body has no way of getting rid of the access iron.

Now let’s throw in mononucleosis at age 15 which left behind some Epstein-Barr virus and find out that EBV latently persists in the individual’s B cells for the rest of the individual’s life.  Hmmm.  Not sure what happened with this, but I KNOW it was reactivated about 4 years ago which started causing a number of problems and thus spawning more invisible diseases.

Hashimoto’s Thyroiditis was found when my body starting attacking itself several years ago.  To use a bit from the Mayo Clinic:  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 activities.
Read that part again about coordinating MANY of your body’s activities.  READ it.  MANY.  I exhibited every SINGLE one of the symptoms for all of these diseases, but never in my life had a light-bulb gone off as when my good friend told me to read about Hashimoto’s.  I’m going to let you use the link above if you want to read more about Hashi’s but seriously it was the worst diagnosis.  I just didn’t know it yet.

When I started to feel like I had the flu every single day for the last 3 years, I should have known something more was coming.  The truth is, I did know.  I knew I had fibromyalgia, I knew I was living with pain and the swollen tender points daily, but what I didn’t know was that it was so hard for people to understand and/or believe.  From what I can tell, it is usually triggered by an underlying cause.  Read more about fibromyalgia here.

All this bring me up to date, but what I left out was what I did in between to feel better.  As the years went on, the extreme sensitivity to cold got to me.  My bones ached to their very core.  Still do, but cold is worse.  My stomach bloated like a Macy’s Thanksgiving Day balloon.  I would have to go to the bathroom more than normal people, but still couldn’t lose weight.  It was painful.  I went through all kinds of tests, again that portion is in the blog if you search.  Giving up gluten as BEST I could was not good enough.  I really had to be serious.  Then I suspected there was another trigger,  so I gave up sugar in November.  That was very, very, very difficult.  I felt like Paula Deen came over and took away my Southern License.

I am not teaching.  I actually could not continue.  The pain, fatigue, constant contact with infection had my body fighting hard just to stay alive.  Not to mention the phlebotomies, and the fact that now my blood cells are considered Microcytic Anemia stage.  I was dizzy, it was hard to get my breath, and my exhaustion was at the highest it had been since I could remember.

I will not go down without a fight.

I started a process by researching all-natural supplements and what would help my body.  I got off acid-blockers as my stomach was already having issues with digestion so that did not actually help.  I started taking apple-cider vinegar in water.  I added probiotics, see the tab here called Vitalize You for more on that, and I added vitamin D as well as a gluten-free supplement called It’s Vital.  I still have bad days.  Flare-ups, and days I stay in my pajamas, but the good days are now finally catching up to the bad days and for that I am thankful.  I am working with my all-natural supplements business and I am spreading awareness of “invisible” diseases because they sure as hell aren’t invisible on the inside.  Not at all.

Changed

Here is the Work With Me tab if you are interested in learning more on how I changed my life.

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My exquisite spell…

Brief overview of the last 17 years.  Phone call New Year’s Eve 1997, cancerous cells found so I had to have a few procedures on my cervix.  Sorry guys, but it’s true.  Told that if I had too many, might have problems carrying a baby.  I was engaged to be married.  A few months later, my urine was the color of a dark red wine.  Blisters appeared on hands, read more here.  Diagnosis that year was Porphyria Cutanea Tarda.  Told to stay out of the sun, not drink alcohol, and oh yeah, get off birth control.  I was about to go away on my honeymoon.  Awesome.  I happened to need/want all 3 of those things at the time.

Years later, blessed with a healthy baby girl.  18 months later, blessed with another baby girl, through a scary life-changing delivery.  Knew that I was only meant to have those two, but because of the scary news from 1997, I made my peace with it.  Because I was still loading iron, my doctor finally tested me for Hereditary Hemochromatosis.

I thought by now I needed a break in the department of “crazy shit no one can pronounce”.  So I got one for a while.  At this point, I had already been phlebotomized, or pints of my blood taken, for years.  I was always tired, and trying to teach.  After my little one went to pre-school, I was asked to teach again.  I was sought out, which was flattering, by a local principal.  She heard good things about me, but my gut said NOOOOOO, don’t go there.  I didn’t listen to it.  My mistake.  Things happened that were political in nature, and I left the school to work in a private school.  Another thing that erm, was not what I was expecting.  After a few years of a whole different ball game, I went back to public school and found somewhere I LOVED.  I taught pre-school.

As luck would have it, my body was continuing its cycle of let’s try to beat Aimee down because she’s too happy.  So my stomach started hurting profusely all the time, for what I thought was no apparent reason.  I went to the gastroenterologist and had things done…not so fun things.  A procedure I actually put off until the last day of school one year because as you can imagine, I had no more time off.

It also coincided with pain emanating from my spine as well.  Then my shoulder started hurting and freezing up.  I had absolutely no idea what was going on (side note, I was developing autoimmune diseases at the time).  Not a single doctor knew what was wrong.  I taught  the next year in complete pain and would come home and put heating pads all over my body and cry secretly.  This was 3.5 years ago.  I refused to be on drugs that would make me not function at school (side note, I was called Mrs. Happy before this point in my life).  We had no planning periods and it was a full day pre-school with 18 little eyeballs watching my every move.

I could not eat without getting sick.  I actually stopped eating any food before work.  I ate very little at lunch and started developing a plan.  I went gluten-free.  NOT because it was a fad.  I want to smash cupcakes on people who say that.  BIG giant cupcakes.  Anyway, it was not enough.  I still was bloated.  Still had pain.  Still couldn’t eat without getting almost violently ill.  I was tested for allergies.  A ginormous portion flared up, BUT not gluten (no Celiac’s as I was tested).  Sugar was a flare.

Now at this point, I am not sure how the doctor, a ENT guy, didn’t think to say “Hey, wow, these are autoimmune flares”, but he didn’t.  I ended up getting worse off, and more sick after the allergens were introduced into my body and had vertigo for 3 weeks straight and was throwing up so bad I couldn’t keep anything down.

When all of that passed, I came to the decision last year that I could no longer carry on my regular duties as a classroom teacher.  I was tired from the phelbotomies (they had made me somewhat anemic), in pain, and not myself.  Life was, quite frankly, a struggle.  A month after school let out, my hip started going out.  I was now having pain radiating in my left hip and it seemed displaced.  In the fall of last year, I started seeing a chiropractor on a regular basis.  He helped get me moving again and my hip managed to get back in place.  When I realized I could no longer afford him on a regular basis as my insurance only paid for so many visits, I was sad, but I had to stop seeing him.

I spent the next three months under heating pads again.  Day in and day out.  At this point, I was still having stomach issues so I decided to stop eating sugar completely in all it’s forms.  I researched Hashimoto’s Thyroid, which I had finally been diagnosed with as my autoimmune problem.  I read everything I could about it and went “paleo” as best I could.  When I say “withdrawals” from sweet tea were the hardest, I am not kidding. 

Was diagnosed with fibromyalgia earlier this year as the result of the Epstein-Barr virus coming to life in my spine…oh yeah, that was why I was in pain.  I spent 3 months coming out of what you probably call depression/anxiety, but still was going to find a way to treat my symptoms without prescription drugs.  I want to perfectly honest here for my new friends.  I no longer like to eat.  I actually dislike the thought of food because it made me sick for so long.  So new girlfriend, I get where you are coming from.  I truly, honestly get where you are now.  The reason I wrote all of this is to let you know, you are not alone.  Thank you for asking me the questions you did.  I will always answer as honestly as I can so that you know it’s okay to feel this way.  It will get better.  So I hope I have caught you up to where I am now.  I am on all-natural supplements.  I did find a new functional medical doctor to look at me like a whole person and not one of my diseases.  I am feeling better, but I still have bad days.

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Motivational Monday…or how to take risks

How to take risks…but only if you know they will work.

So, here’s how to take “risks” safely:

  • save your money
  • plan every second of your life
  • work until you die or retire (whatever comes first)
  • wait for the “right” time
  • make excuses on why you are waiting
  • tell yourself you are not ready
  • tell your spouse/partner/whoever that it’s better to be safe than sorry
  • circle the day on the calendar you will be ready, even if it’s 20 years from now

Of course, there are other options.  You wake up one day and you decide that all of the above will never make you happy.  You decide that there is no time like the present.  You use the famous Nike slogan and finally “Just do it.”  You go for it.  You quit your job for various reasons like me and have no money saved.  People will talk about you.  It’s fun.  Spread your own rumors about yourself like “Hey, did you hear Aimee thinks she’s going to make money working for herself?  Hahaha”  Or this one “Aimee started her private consulting business for people who need gluten-free, non GMO, all-natural supplements.  What was she thinking?”  P.S. I was thinking people needed other options who have autoimmune issues and I can help them.  See the tab up top on this blog called Vitalize You for more or find my page on Facebook.

I was also thinking about how people are tired of doctors who don’t listen, how gaining weight with a thyroid issue made me feel helpless, and how there had to be a better answer.  I was tired of the bloat, the pain, and the stomach issues so I decided to put myself on a year-long plan and GUESS WHAT??  IT WORKED.  So I have been healing my leaky gut, I have been fending off the pain from autoimmune, and I have really helped others find hope. So seriously, I didn’t wait for all of the above things to fall into place.  I just did it.  I am also looking for others like me.  If you are interested in joining me, please click the link above and private message my Facebook page.  I have a plan and it works.  It works for anxiety, fibromyalgia, Hashimoto’s Thyroiditis, low Vitamin D, pain associated with autoimmune attacks, bloating, and balancing YOUR body including your gut.  It does NOT just involve taking supplements, but that was part of my process.  It involves mind and body healing.  Baby steps with elimination diet for autoimmune issues and finding you a full-functional medical doctor who listens.  The last one took me a long time, but I learned to make a plan, and put it in action.  So here’s to risks.

Risks