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

Awakening People Post!

Hey guys!! Most of you know my story in bits and pieces, but I recently tried to pull it together for a submission and guess what?  It’s being posted tonight!  Awakening People is the Facebook page, but here is the link below:

http://www.awakeningpeople.com/6-things-i-learned-from-fighting-invisible-diseases.html

Thank you so much for reading ^^^  muah.

 

 

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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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

HereditaryHemochromatosis

As we left off, our heroine was fighting things she couldn’t see with sub-par weaponry.  In other words, it would have been nice if my doctor had thought to look further into my serious life threatening disease.  However, she was very busy patting my hand and looking for more of those neat blisters I had.  Seriously.  It’s like being a brightly colored bug that is discovered by an entomologist.  I started doing my own research and had to remind everyone to test my ferritin levels plus perform a new test I had discovered called transferrin saturation.  I figured out that if my transferrin saturation was greater than 45%, my liver could be in serious condition.  I asked for a whole panel of work ups on everything.  I found out that I could be highly susceptible to hepatitis C, liver damage, and cirrhosis of the liver.  So, on one of these occasions when I was having my blood drawn and the doctor happened to come by and see me, she asked me how I was doing.  I told her I was completely and utterly exhausted.  Apparently I was suffering from chronic fatigue, which made her think she needed to run this supplemental blood test.

Now, I can’t recall the exact year at this time in my story.  It was after the birth of my first child, which means that I have been in treatment with this doctor at least three years.  The point I am making is that the test she was about to do could have been done when I first started treatment.  She said she thought that perhaps I had hereditary hemochromatosis.  Naturally, I proceed to make a phone call to a friend in medical school.  I ask him what he knows about HH, and to paraphrase “Oh, you don’t want that shit.  That’s some bad stuff.” Ha.  So, I look it up and find this:

Patients who do have symptoms may experience:

  • muscle aches and joint pain, primarily in the fingers, knees, hips, and ankles; one of the earliest symptoms is arthritis of the knuckles of the first and second fingers
  • chronic fatigue
  • depression, disorientation, or memory problems
  • stomach swelling, abdominal pain, diarrhea, or nausea
  • loss of body hair, other than that on the scalp
  • premature menopause
  • gray or bronze skin similar to a suntan
  • heart problems
  • diabetes
  • enlarged liver
  • increased susceptibility to bacterial infections

http://kidshealth.org/parent/general/aches/hh.html

To quote the Church Lady, “Well, isn’t that special?”  As soon as I read the symptoms, I knew I had it.  It didn’t matter what the test said, it all fit.  Luckily, you can get it under control with phlebotomies.  Since I was a pro at having my blood taken at this stage, I was okay with having blood taken for the rest of my life.  Wait a minute, hold everything.  The word hereditary is in there.  All this time I have been blaming myself for everything that was happening and now I can blame someone else.  My parents.  As soon as I got the results back, I called them.

Truthfully, I do not hold them responsible at all.  After the birth of my second daughter, I took both of my babies to CHKD to see a genetic specialist.  We had them tested for the disease.  The test only became available in 1998, and by this point it was 2002.  My parents were very supportive and my mom researched everything like a mad woman.  When I slacked off because I was tired of going for check-ups, she reminded me to get my levels checked.  When I stopped asking questions, she went with me and asked some of her own.  When I had a drink of wine, she asked me if I should be having that.  So, we all prayed that the girls results were favorable.  I studied biology, so I knew that the chance of carrying the HFE gene was high, but as long as they only had one, it would balance itself out.

Finally, we get good news.  Our girls are only carriers.  My husband has no history of the gene.  So I proceed to pester my entire family and ask them all to get tested.  I seem to recall my father’s doctor did not want to do this test for some reason.  Nevertheless, we finally all get our results.  Both parents are carriers, thus producing one child with it, and one without it.  Did I mention I hated that portion of my biology class?

So now what?  I could make this longer, and perhaps I’ll come back to this topic later, but for now I’ll end this portion by saying it has been thirteen years since all of this started.  I do not hide in the house during the day, but I do wear large amounts of sunscreen in the summer months.  I encourage all of my friends to ask questions and don’t give up on your quest for a healthy life.

“If you are going through hell, keep going.”  ~Winston Churchill