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.  If that one doesn’t work, I was also interviewed here.  << By host Tonya Wilson.

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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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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Motivational Monday…working from home

Mondays have never been easy for me.  This might come as a surprise, but that’s actually why I started Motivational Monday last year.  As a teacher, I was always planning.  I was very detail oriented and organized.  Tasks were done well before they were needed to be turned in because I kept meticulous notes on what was due when.  I loved brainstorming with my friend across the hall because once we got the ball rolling, it was fun.  I loved the children and seeing them light up with learning made me feel very much part of their lives even if it was only for a year.

The work from home me is only slightly different.  I still give myself lists and tasks.  I do not use my extreme fatigue as any sort of crutch for myself even though there are days I want to.  I get up, and yes, my wardrobe is not fancy now.  I do not worry about if my clothes match (the wiener dogs don’t really care).  My daughter doesn’t seem to mind, but that’s only because I drop her off at school and don’t have to get out of the mini-van.  That’s right.  The mini-van.  Anyway, she loves me the way that I am and has never said maybe I should run a brush through my hair.  I might say that to her, but that’s probably why she got a pixie cut.  She does not like to be bothered with things such as “hair”.  She has important fifth grade things to attend to.

I work slower now.  I know that.  I take breaks.  And I get distracted easily so I have to really focus on what I am doing.  The customers of my business Vitalize You come first when they message me.  So I will stop my writing, quote photos, and other tasks to attend to them.  I get back on track with my projects as quickly as I can.  I like deadlines…because I only hold myself accountable now.  I have no “boss” which is refreshing.  “Hey me, let me run this by us.”   Okay, what have we got to do today?  Research.  Write.  Help others.  Good schedule.  Sometimes I mix it up a little.  For the record, my quote page does not pay me anything.  I simply provide that service to others because I like it.  My business page is doing well because I really do want to help others and I am honest with my customers.  See my tabs up top for that.

So this appears to be the year my questions are getting answered.  I asked, and asked, and asked some more last year to no avail.  Should I stay home and start doing my own thing?  What if I don’t make it?  How will we make ends meet?  Will I live in a cardboard box?  Why is my body trying to hijack my life?  Was this part of the “plan” and if so whose plan is this anyway???  Patience has not been my strong suit…like ever.  My friend said to me that there are many ways I can teach, and this is just another way.  It helps to think of it like that.  I am still teaching people, but I am teaching them lessons I have learned.  So here is the quote that keeps popping up in my life:

Questions

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Welcome to Fantasy Island…

Another day has passed and I am continuing on my path.  I am following my new regimen as directed.  My personal trainer, let’s call him Mr. Roarke, tells me that the weight is just going to drop off of me and I am going to be a size 4 in no time*.  I love Mr. Roarke.  I keep looking around for Tattoo to jump out from behind the weights, but so far, I haven’t seen him.  The fantasy he has created for me sounds wonderful in my head.  The reality is that I did not do this to be a certain “size”.  I am doing this for my physical and mental wellness.  That being said, Mr. R sent me on a quest to find some special protein drink mix.  Note, I have updated the link to one I use now as it is all-natural with only naturally occurring sugars.  ~~Update!!~~ After I made my own program, listed a bit under the tab Vitalize You here, and stuck with it, I did end up losing the weight and dropping many sizes…can fit into my old size.  BUT it was my persistence that helped.

I went to the local health food store where I asked the lady working behind the counter where I could find this mix.  She had not heard of it, so she ventured off into a back room somewhere where some mysterious man was waiting.  Apparently he is the guru of all things healthy.  A moment later she reappeared with an emphatic no, they did not carry that brand.  So I went back over to that section and started looking at all the protein mixes.  A man materialized in the store, and I took a wild guess that this was the guru.  I asked him what he recommended I take instead and got a dissertation on all things protein.  I had no idea.  Really.  He asked me what this was for and I mentioned strengthening my joints through exercise.  He told me about a product I have not heard of called Wobenzym.  This product is supposed to provide wonderful benefits including eliminating joint and muscle pains.  I’m not sure if any of my readers have heard of this, but if you have, please let me know what you think.  I am willing to try it.  I have read the reviews, and they look promising.

The lady behind the counter asked me if I found what I was looking for, and I briefly told her about the new discovery.  She said, well maybe you were meant to come in here.  She read my mind.  Perhaps Mr.Roarke sent me on a quest in which I inadvertently learned something new…just like on the television show.  I guess I have to board the plane and find out if it’s true.

***UPDATE:  I actually am on all my own natural products.  I take Relief, and it is amazing.  It contains Glucosamine and Chondroitin Sulfate, PLUS turmeric, which I love, yucca root, which is known to be anti-inflammatory and MSM which is a plant-based formula used to help ease chronic pain.  And it works!  ha:)

“And yet I think of Christopher Reeve who said he would pay two million dollars to be able to feel pain again. What a courageous man! So I have to think that pain is a blessing.”

~Ricardo Montalban


Getting by with a little help from your friends…

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 12 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, and if you are really interested in buying them, you can contact me with a valid e-mail address, or just use the link above.
  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