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

What is Fierce February?

Fierce Love

I was pondering what to say to everyone on The Burned Hand fan page, when I came up with #fiercefebruary due to some research I was doing about cortisol levels and self-esteem in the older population.  The word “fierce” is particularly useful in self-esteem talks because you can basically “fake it until you make it”.  Fierce can be ferocious and forceful like a lion…but it can also mean showing a heartfelt and powerful intensity.  That’s what I want you to put in your head a minute.

What does fierce look like?

So I did a series of posters on Vitalize You Wellness that I pinned to the top of the fan page.  That page is meant to inspire my friends, followers, and clients of my 4 Weeks to Wellness as well as my yoga community.  It was difficult to do the posters and of course, that was because of the old feelings that came up with them, but when I was done, I knew it was the right thing…even though you have to hover over the pause to slow it down since I didn’t create the program as it’s on FB.

When I came to my yoga teacher training, it was just like any other time you would meet me.  I was open and honest about what it was like to live with invisible diseases and pain because I looked okay on the outside. But the truth is, don’t we all??  I’d like to start you off with this thought for the month.  How can coming to terms with whatever you can’t change make you stronger?  Better yet, why don’t you start working on the things you can change and see where you are in a month?  I mean honestly, that’s the whole basis of my plan that I made for myself.  I was so focused on the pain, the hurt and the diseases that I forgot to focus on other things.

As I began to work my way backwards, which was very interesting because I focused on the end result instead of that moment, I kept telling myself that I could make it from February 6th of last year, WOW, until June 14th.  Each month I would start my wellness checks, was I eating the right way for my body, yes.  Was I now moving, yes.  Was I taking care of my stress and balancing my life out as best I could?? Yes.  And lastly, was I taking care of my self-care needs?  Yes.  When I began to realize that not everyone fighting invisible diseases had the kind of support that I did, I started working on this course for my friends.

It has now been one year since I started my yoga teacher journey, and I want to encourage you to do something that makes you feel “fierce” and strong.  Please know that one of my favorite quotes is “It takes so much courage just to start.” And I hope you start working on yourself a little each day.  If you are interested in learning more about my program, 4 Weeks to Wellness, which is currently under $50!!  Click the linked word to find out more.  You get lifetime membership for the introductory price even if I add more modules later!

Fierce Feb

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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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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.

 

 

Tips for living with pain…

Oh great.  Here is yet another blog article trying to tell me how to live with pain.  What does this writer know?  This writer lives with 6 invisible diseases…and all of them have caused pain.  Hereditary Hemochromatosis (iron overload), Porphyria Cutanea Tarda (sensitivity to light, skin blisters), Hashimoto’s Thyroid (autoimmune…caused extreme stomach issues), Epstein-Barr Virus (felt entire vertebral column flare-up), Depression from pain, and Fribromyalgia (when anyone touched my skin, it felt like a slap).

Over the last three years, the pain continued to get worse.  I opted not to be on the pharmaceutical drugs due to the fact that HH is a genetic condition and no doctor could tell me for sure if the drugs would make my liver worse.  So pain it was.  But I wasn’t going to stop there.  I continued my search for things to help me cope that were going to work with my body naturally.  What did I find?

  1. Turmeric milk.  Turmeric has been used in India for thousands of years for its anti-inflammatory properties…due to the active compound curcumin.
  2. Relief.  Building on that, I take this product because it has ingredients such as glucosamine and chondroitin, but even more than that it also includes turmeric root extract, as well as yucca root, which has long been used for osteoarthritis as well as inflammation of the intestine.  Ah-ha.  Hmm.  Remember my stomach pain before?  Better within weeks of getting on this.
  3. Restorative yoga.  Yoga has been shown to decrease the stress hormone cortisol.  Do you think I might have been stressed when I moved if my whole body felt like it was on fire?  Yes.  Just a little.  The difference in restorative though, is that you get to use comfy bolsters, blocks and blankets.  So we made little nests, and sat in that pose for 5-15 minutes depending on what it was.  I had a hard time at first, but learned to let go of my expectations of what my body used to be able to do.  The poses became second nature.
  4. Vinyasa yoga for back pain.  I graduated to Vinyasa…honestly, only because a friend pulled me in the direction my mind was afraid to go.  When she suggested restorative, I gave it a try.  When she said that I could do Vinyasa and possibly teach one day, my mind shut her down due to the pain.  “She has no idea how much moving hurts.”  Said the mind…but the heart wanted to get better.  Thankfully, it’s pretty strong, and said “Let’s do this thing!!!”  And so I did.  Almost 200 hours later…the girl on fire.  Literally.
  5. Meditation-like thoughts.  When I felt myself go into the dark place of pain, I would literally stop and say things to myself like “I am breathing in.  I am breathing out.”  I didn’t come up with this on my own.  I read part of a Thich Nhat Hanh’s You are Here, except at the time, I didn’t want to be there.  ha.  So I never finished it.  But it did teach me to focus my breathing.
  6. Friends checking in on you.  This part became difficult.  Not many people were in this category.  When you are in pain, people slip away.  They do.  It’s not their fault, but it is in the human nature to be uncomfortable when you don’t know what to do.  Most don’t climb down in the hole with you.  Watch this short video to get the full meaning of “The Power of Empathy”.  Rarely can a response make something better, says Dr. Brown, what makes something better is a connection.

So my friends, I leave you with my connection to you.  I am in the hole with you.  I have climbed down there.  I will hug you.  I will give you that love and connection to your pain, but the next step is on you.  The best advice I have for you is to read more about my 4 Weeks to Wellness course and take that as your next step.  The program was created based off what I did to get my life back, and it truly and honestly saved me.

Read moreNew, “Work with Me” tab has more options to help you from home!

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Motivational Monday…for the UNbroken

Hey friends…you know how last week on the Facebook fan page for my blog, I asked you a question?  I asked you to tell me what kind of “invisible disease” you had.  Many times, we feel so alone with these diseases, because they are in fact, not visible to people looking in at our lives.  But this statistic came from the link I posted: 96% of people with chronic medical conditions live with an illness that is invisible. 

I don’t really think we are alone.  So let’s say you didn’t get your disability and you have 5, maybe 6 illnesses on that list.  Guess what?  It happens.  I decided it meant something different.  I decided it meant that I was supposed to find a flexible job working from home and helping others.  Don’t be discouraged.  You have a few options.  You can continue the fight without a lawyer.  I have been told that’s why I never got anywhere.  You can get a lawyer.  Or you can move on.  Moving on is not giving up.  I just want to give you permission in case you needed to hear that.  I know all the excuses in your head.  I know all the what ifs.  But do not stay in that place of despair.  Make a plan.  Work on it.  Move on.

So now I am in yoga teacher training, and it’s hard.  Very, very hard emotionally and physically.  I doubt my path at times.  I do.  But as my friend said yesterday, okay really paraphrasing, if we didn’t have emotions or feelings we’d be like Data from Star Trek.  He was an android who was unable to feel emotion or understand certain human responses.  We don’t want to live like that.  So acknowledge the feelings you are having, and work the plan.  Whatever the plan is.  If you don’t have plan, write something down.  Just a few things.  It can be as simple as get out of bed, and get dressed.  Get to the store today.  Fibro friends, this is an important plan.  You know this.  Get out of your pajamas…says the blogger still in pajamas.  But you know what I’m talking about!!!  You do.

Next on your list, make a new friend.  Okay, this one is hard.  Why is this hard?  It is hard for people who feel alone, because opening ourselves up and getting vulnerable with new people is like going to a new doctor for us.  We hate having to start at the beginning and tell our story.  I know this.  You know this.  Stop ignoring this one.  So here’s how you can go about doing this.  Re-evaluate who is in your life right now.  Who checks in on you…who checked out on you.  Those people who checked out of your life during your hardest times, they have left you space for new people.  I know it sucks, believe me I do.  But it’s time to be honest.  Those people didn’t understand anyway.

So start a new practice.  Get your list out.  What did you like to do before all the bumps?  For me, I already liked yoga, so I looked into restorative, which was low-key.  I researched other types of exercises for fibromyalgia, and decided I didn’t feel like going to water aerobics, but if you like that, put that down.  if you liked gardening put it down.  Don’t think about the pain, I know you automatically went to “I can’t get down there and bend.” Stop.  So here’s a neat idea, look up community free classes or workshops in your area.  You can also container garden and not have to bend.  See how I did that?  Put it at eye level.  Flower arranging?  Do it.  Whatever it is that old you did, write it down.

So guess what’s going to happen during this process of thinking about other things that you now have room for in your life…you are going to make new friends.  You are going to feel better, and you are going to feel less alone.  Anytime you have a negative thought, push it away and back to the things you are doing that are positive.  That are a step in the right direction.  So when you get that letter in the mail from social security…don’t be afraid to open it.  Make a plan.

broken

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

Talk Radio…

So this week has been interesting with the launch of The Wellness Universe website…being asked to write for all kinds of different pages.  And getting a phone call that shall remain a mystery for now.  But this, this is not going to be kept a secret…

Authoress Tonya Wilson of “The Time Is Now” sheds light Issues Of Addictions, Recovery & Deliverance. On Sunday, January 25, 2015 @ 7:00 PM EST. If You Need Inspiration, Answers, or Support, The Time Is Now! Her Guest Panelist This week is, AIMEE H….Aimee H. is a fighter of invisible diseases (namely her own). She is the Writer of the Blog “The Burned Hand”. She is also the Owner and Operator of Vitalize You. Both are now a part of The Wellness Universe Directory. Join us as she shares an all natural approach to wellness and recovery, The recorded playback is here blog talk radio.

I have connected with many people over the years and I feel most strongly connected to people with illness.  But recovery can be many things to many people.  It can be drugs, alcohol, pain killers, but it can also be recovery from internal conflicts.  Depression, fertility issues, things people cannot see and in no way shape or form have the right to judge your path.  So please take a moment to listen in if you have time.  If not, I will probably come back and drop a link in this post later with the recording.  We’ll see how I sound first.  Wink.  P.S. Ihaveneverdonethisbeforesodontbejudgingme

But I know you will be cheering me on!!

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Blogiversary!

Happy Blogiversary to us!  Without you reading my posts, there wouldn’t be a blog.  Ok, that’s not true, I would be lonely, but the truth is, I write for me as I’ve always said.  It heals something deep down inside me that was broken the day I found out about my first diagnosis of an “invisible disease” named Porphyria.  So without further ado, let’s go back there, shall we?  Cue psychedelic swirly things.  And poof!  We are in 1997.  That was the New Year’s Eve all the crazy decided it was time to come out.  It started with tests coming back odd…and I thought my life was just beginning with my soon-to-be husband back then.  Then I get told about the cervical dysplasia and I admit the word pre-cancerous cells is scary.  It just is.

So as we move into 1998, the year does not get any better at that point.  I find a man I am madly in love with and now I am falling apart…in more ways than one.  That’s when the blisters started.  Blisters. Are.  Bad.  These were not your ordinary ones mind you, well have a read over there at my link.  I’ll wait.  Humming music in my head.  Okay, back on track.  See I told you.  They used LATIN words.  Latin.  On me.  Who did they think they were dealing with??  I had a B.A. in English and was a researcher.  Of course I was going to find out what they trying to hide.  And it wasn’t going to be good…but I already knew the that the second she whispered to the other doctor.

Anyway, I consoled myself back then with the fact that out of all the porphyrias, mine seemed to be the less likely to cause internal pain.  I didn’t think about the psychological at the time.  The fact that I was such a strong person and this was slowly killing me inside.  But, I had a wedding to plan so let’s get to the rest of 1998, and how it lingered on.  You will want to read that link over there again.  I’ll wait for you to catch up because that one includes everyone’s favorite subject.  Vampire lore (hint, I do not sparkle, but yes, the burning part is real).  I have been told I am ageless.  There is some truth to that part of the myth as well.  I do get my blood taken for life.  But I would not wish this on even the most fervent Twilight fan.  P.S. that vamp is dumb.  My man Damon Salvatore is much better…in fact any vampire is better than Mr.  Sparkle.  Just my opinion.

Okay, back to me getting married at this point in my life with pints of blood taken every week, no sunlight, no birth control, no alcohol, and blisters still present.  Did I mention my skin burned?  Burned all over, but especially my hands.  Ding, ding ding!  See how I came up with the quote title??  It made perfect sense.  Love of literature combined with the horrible stuff going on in my body.  Poof.  Perfect title.  So let’s finish up remembering why I started this blog by reading this post the Summer of 1998.  And this my friends, is why I need to finish my book.  I believe my story can and does help others feel less alone in this world.  And this was just the beginning.

hope