How Irish Are You Really? A fun quiz.

Luck o the IrishHey lads and lassies, this is just a wee bit of fun for you today, but before you take the quiz, if you have Celtic Ancestry, or even viking blood in your veins, might I direct you to learn more about the Celtic Curse?  I happen to have it and so do many others, and if you have iron overload, learning about it can save your life.  I am totally fine now as they caught it when I was young, but I still have to have my levels maintained for life.  So now that I have taught you something serious, here is a bit of fun.  Feel free to share!

 

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9 tips on how to manage your iron overload disease.

9 tips on how to manage your iron overload disease…

This post will be dedicated to all of my new friends and friends I have yet to meet.  I can’t wait to get to my quote, but that’s my closing signature as you know.  So here it goes.  Let’s collect all of things we have learned and put them on one page.  I’m going to start because it’s my blog.  Onto your assignment.  If you have been diagnosed with Hereditary Hemochromatosis, you already know what’s wrong with you.  Hopefully, somewhere along the way someone explained what you should be doing, but if not, click the link above.  I am moving onto the next step.  Healing.  All of the bloggers I have recently met share a wealth of knowledge, but we are not doctors.  We are here as a support group for each other, so ask your doctor about any tips we share.  I am going to share some things that have taken me over 14 years to learn.  I don’t want you to wait that long.  If anyone has anything to add, please comment below.

  1. My joints ache.  What should I do?  Start taking a product with Glucosamine and Chondroitin like Relief.   I use the products I linked here, but you can use whatever works for you.  I personally know these have no fillers and no adverse side effects for my autoimmune disease as well.
  2. I am exhausted all the time.  What’s next?  After your ferritin has reached a good level (10 is nice), have your doctor check your vitamin D.  Seriously.  Why did it take 12 years to realize this?  I can’t be out in the sun for long.  This would make sense to check.  My favorite is this one called It’s Vital Minerals.
  3. I was taking a multi-vitamin.  What now?  Stay away from them!  Too much vitamin C is not needed as it promotes the absorption of iron and obviously we can’t take iron.  It was all Mr. Flintstones fault…if only we knew back then.  Find a vitamin with either low C or none added, and no added iron!
  4. I like raw seafood.  I heard I have to stay away.  This is true…to some degree.  Do not eat raw oysters ever due to Vibrio Vulnificus.  Thanks to one of my new blogger friends, I learned this word.  Honestly, no one ever told me why, just the get sick and die part.  Seriously.
  5. Drink more coffee.  Why?  Coffee is your life’s blood.  Ha.  Okay, so not really, but it does interfere with the absorption of iron.  Awesome.  We are Bi-winning now.
  6. Can I still drink gallons of sweet tea?  Okay, so I live in the south, and drink lots of tea.  My momma will even tell you she put it in my bottle.  No lie.  Please drink all the tea you want!  In fact, it also has magical properties if you drink the green tea version.  Would I fib?  Well, maybe not exactly magical per say, but it depends on your symptoms.  We are basing this off me.  While it does have a trace amount of ascorbic acid (vitamin C), it has selenium, which helps the thyroid.  This is important as iron has played with parts of my body I was not aware of.  That statement sounds a bit off…moving on.
  7. Prebiotics are good for your gut!!  If you are in maintenance phase and are de-ironed, add these chews to make your digestion better.  Prebiotics are fibers that support the growth of healthy probiotic bacteria in your digestive system.  Very important to heal your “gut” and to think about it as something that helps balance your whole system.
  8. Yay!  I am “normal” again.  Can I stop getting treatments?  No, you can’t.  Not unless you have a vampire living with you or you are into bloodletting with leeches.  Go every 4-6 months for life and you’ll be fine.  That is why my doctor has a house on the water and just added a library addition.  I wish I was kidding.  She could at least offer me a tour.
  9. Please get checked for diabetes, thyroid problems, heart disease, or pituitary issues should new symptoms occur.

This list will continue to grow and evolve as my readers share their knowledge.  If you found my blog through Facebook, welcome!  Please feel free to subscribe and share with your loved ones.  And now the part I like sharing best…one of my favorite quotes.

“Friendship is born at that moment when one person says to another, “What? You too? I thought I was the only one.”

~C.S. Lewis

Share the Wealth…blog talk radio show

Share the Wealth with Kellie Fitzgerald and her guest…well me!

http://www.blogtalkradio.com/themagichappens/2015/07/29/share-the-wealth-with-kellie-fitzgerald-and-aimee-barnes-halpin

Hopefully you got a chance to listen to that ^^ as it was actually a really quick show!!  Well, for me anyway.  I glossed over most of the details, but I do want you to know that there is a search button here on the page and if my story resonates with you or you know anyone at all who suffers from any of the diseases I talk about, please feel free to share this post with them.  Lastly, I am doing some more research on one more new gene mutation so look for that soon if you happen to like reading about invisible diseases and possible links as to why you might have what you have!  ~Aimee

Breaking chains

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.

Break

Celtic Curse…

What is Celtic Curse?

55,000 years ago is difficult to wrap your mind around, but sometime during the Iron Age, the Celtic culture established itself throughout the British Isles.  During that time, food was scarce and diets weren’t exactly well-rounded.  So the body did what it had to do in order to survive.  It started a gene mutation to protect the people of that culture.  The diet was not rich in iron at that time, so the body fought to hold onto what little stores of iron it possessed.  The war began long before I was ever born, yet once started, it seemed there was no way back.  The mutation spread as people began to move and claim land in other parts of the world.  The Vikings took it with them to Scandinavia, and much later, England, America and Australia were also blessed.

In my search for knowledge about all things connected to this gene, the earliest website I found years ago that I still use today is the American Hemochromatosis Society.  Another particularly good one to reference is called Fighting Celtic Curse.  Stephen Cobb’s story and how he has helped raise awareness was inspiring to me at a time when I felt lost as to what could possibly happen to me next.  I was diagnosed at a young age…so I was lucky, but there was no one out there like me at the time.  The year was 1998 when everything started to come out, and you can read more about my experience by going to the very beginning of my blog.

If you are one of the “cursed”, welcome.  There is much you can change in your diet as well to continue to feel better; however, be advised.  There is no cure.  Bloodletting for life is our treatment and you must keep up with all your own tests.  I advise you to start a folder and a running record on the computer.  The year, the date, and what exactly is going on.  There might come a time when you need to reference it because there is much “brain fog”.   I know this also sounds strange, but there can be anemia as well, so if that is present, please reference this page on your diet from the Iron Overload site.  It is very important to know that you do not treat anemia with IRON ever with this gene.  Here is some information on anemia.  The date on that paper is amusing to me because it was years ago and my diet was never addressed in 16 years of phlebotomies, or having pints of my blood taken.  So I now fall into the anemic category as well.  If you are new to this, please read up and be your best advocate.  Happy St. Patrick’s Day to my friends near and far and remember this:

Celtic Curse

Thoughtful Thursday…

For those of you who are new to my blog, I want to say welcome.  I started this blog as a way to release some of the pent-up anger I was feeling over my health conditions.  I knew others out there were probably feeling the same way I was, but at the time, I had not met anyone at all with the same combinations of diseases I had.  As a matter of fact, if you go way back into my blog archives when I talk about the early years of my diagnosis, I did not meet anyone for over ten years or more who even had one of my conditions.  It was a very difficult time in the beginning because I had no idea what was going to happen.

So I tied this blog concept into my love of Tolkien, the fact that as a hard-headed youngster I actually burned my hand reaching for the stove (I thought there was soup there…wanted to help), and then right before my wedding, my skin started to blister and my hands felt like they were on fire all the time (PCT).  There have been many times when I felt some sort of resentment towards others as they lead their “normal” lives.  I kept it inside and “stuffed” it down.  I did not explode on others, but I was not nice to people I cared about.  The thought was, they will forgive me.  Okay, so maybe I didn’t consciously think that way, but looking back, I know it was easier to push them away when I was hurt.  Much like a wounded animal.

Now, 17 years after meeting my future husband, I can say he is finally learning this and I am learning erm or trying not to react to my pain.  Some of what has helped me is as follows:

  1. I met a doctor who actually said, “If you don’t like the job I’m doing, you can fire me.”  Technically he is my chiropractor, but no one has ever told me that.  So it counts.
  2. I surround myself with positive quotes, positive people, and positive things.  If I can’t, I will leave a situation.  It took me a while to realize I didn’t have to stay to make a point.  I could leave and that would be a good point too.
  3. I avoid situations I don’t want to be in.  I am learning to say no more often.
  4. I found a person who has some of the same theories I do about Hereditary Hemochromatosis.  I have been saying for over 15 years that if this is genetic, we don’t know enough about what that could mean.  You are messing with genes here.  Here is his link as he has been researching a bit longer than I have.  Leslie Johnston, D.V.M.  He has put together a list of things he thinks is linked.  Yes, it seems like a long list, but number 117 sure is true.  My family would agree.
  5. My porphyria friends.  Where would I be without my tiny band of porphyria friends.  Such a nasty disease and you all cope as best you can.  I know that I have the cutaneous kind, but we are still a band of fighters.  Each of us fighting our different kinds.
  6. My Hashimoto’s diagnosis (thyroid) is still one of the things I don’t understand, but eating on a restricted, mostly clean, mostly gluten-free diet improves some things, and for that, I thank my husband for being supportive.  We walked away from the most delicious looking bread just because he knew it would cause me stomach issues.
  7. A whole new world of friends on The Burned Hand’s Facebook quote sharing page.

So, I have not forgotten all of you, my dear friends, who are fighting disease.  I might not post as many updates as I once did, but I promise you, if I come across some research that will help, I will let you know!  This post is just to let you know I am thinking of you.

One More Round

Difficult times…

I have posted about this before, and some of you are well aware of the battles I face because you face them too.  There are many, many, many things that drive me crazy in this world, but above all is when I read that a doctor has told a patient with my disease that they don’t need a phlebotomy yet.  They can wait.  When researchers say that women are fine as long as they are not over 50.  Ha. Ha. Ha. Ha.  It would almost be funny if I didn’t know people who have died from this disease.  I am talking about Hemochromatosis and the link that is here.  While the link is very informative and has compiled some great facts, I want to show you where it is wrong.  Take a look at this child:

scan0071That child is me in fourth grade.  I look perfectly healthy.  All the while I was eating my Flintstone vitamins, drinking well water, and going out in the sun without sunscreen all the time.  Yes, it was okay back then.  If my mother had known I had a life-threatening disease we would have done things differently.  We never once thought my deeply tan skin could mean anything other than I love the sun.

 

 

scan0079Here I am again (ignore the college room and mint outfit).  I sure appear to be getting more bronze, wouldn’t you say?  About this time is when everything started going all crazy in my life.  I was trying to finish up classes and sleeping.  Almost all day.  Everyday.  I would wake up only to want to go back to bed again.  My skin was getting thin, and then the blisters started to appear.  My urine was the color of port wine.  That was the Porphyria saving my life.  I didn’t know it at the time, but it would be a few more years before the doctors would realize that the underlying cause was the my C282Y gene (HH).  I was showing symptoms long before this.

The bottom line tonight folks is that if something doesn’t feel right, it usually isn’t.  Please be your own advocate.  I read the most heart wrenching story about a mother who lost her son to this disease and he was only 35.  I always feel like that could have been me.  I have been blessed in ways that seem random, but looking back, I know divine intervention has helped.  I still have problems dealing with my “curse” and probably always will, but my focus became educating others into awareness.  So tonight, if you have lost someone to this disease, I hope you continue to promote the awareness of early detection and screening.  Thank you for supporting others in this fight.

Keep on charging the enemy so long as there is life.  ~Chinese fortune cookie, opened tonight

“You may have to fight a battle more than once to win it.”  ~Margaret Thatcher

Blood doesn’t lie…

Not intentionally anyway, but it might mislead you.  That is what I am writing about tonight.  I found a nice little article about the “Celtic Curse”.  Whenever I say that, I imagine music in the background…the kind that leads to “certain death”.  Some of you might get that reference.  Anyway, occasionally I have people e-mail me and ask me about some things the doctors recommend for their recent diagnosis of hereditary hemochromatosis.  Not because I have my degree in that field mind you, but because they know that something doesn’t sound quite right about what their doctor said so they ask someone who has been living with it for a long time.  I always say the same thing.  Listen to your doctor, but seek out a specialist in this field if there is one near you.  Never stop researching or giving up on the plans you have for yourself.  This is just one speed bump in the road of life.

I was delighted to find someone else who was doing more research along the same lines of my thinking.  Neither one of us has attended medical school mind you, but we are smart enough to see clear patterns and know what our bodies are telling us.  As I have said all along, keep a journal of your symptoms if you can so that you can provide your doctors with as much information as possible.  Soooo, I’m going to go out on a limb here, but I wonder how many HH sufferers have stomach pain as well as joint pain?  The c282y gene mutation could be the underlying cause of many issues we have yet to know about.  The bottom line is, if you think you have made a connection between something you are eating, like gluten, or something you are not getting enough of, like vitamin D, go with your instinct to help fix what you suspect is wrong.  I will leave you with this fun Blood Quiz, that oddly enough, I did very well on.  So well I surprised myself.  Ha.  Paging Dr. House.

“Healing is a matter of time, but it is sometimes also a matter of opportunity.”  ~Hippocrates

Good ole’ Hippo Crates.