These 5 Signs Scream Drink More Water!

My youngest daughter recently started running cross-country.  A cross over from soccer as she loved her coach and he coaches girls soccer in the spring, and cross-country in the fall.  She’s been doing an amazing job, until the one race she was in agonizing pain.  I knew that she was running last after being at a meet all morning, but what did I miss?

It suddenly hit me that no one, herself included, remembered to remind the kids to stay hydrated for the last race.  Then, volunteering to march alongside the band for the oldest daughter in a recent parade, a mom told me of a boy cramping and almost passing out during the last parade.  You guys.  What do I always say (to my kids to be embarrassing)?  Hydrate with some high quality H2O!! Yes.  I use The Waterboy.

So now that we have covered this, grab some water right now and read the rest of this.

5 Signs That Your Body Needs More Water:

  1. You actually feel dry.  Dry mouth, dry eyeballs, or dry skin.  Right.  Like you’ve been through the desert on a horse with no name…or something like that.  Sugary drinks are like adding some crack to your brain and are not going to hydrate.  I do not make these facts up.  I just write them in a more interesting way than others.  If you are experiencing itchy eyes and don’t normally have allergies, go for some water.
  2. You feel like you are 80 years old at age 30.  I might be the exception to this because I started to feel old at 23, but really, if you are experiencing joint pain, I learned about this really cool thing called synovial fluid, and hey.  It needs some love.  Sugary stuff is inflammatory to joints.  Chances are you have heard this.  Water is not.  It helps nutrients move through your blood therefore getting to your joints, and not only that, your body’s cartilage is composed of nearly 80% water.  Hmm.  What if it’s not getting any?  Where is it taking nutrients from?  Think about it.
  3. Fatigue like you can’t explain to the average person.  When I was in chronic fatigue, my body had to work twice as hard.  I don’t try to think back on those days of 24/7 pain for like 5 years, but I do know that I wasn’t doing the correct things.  No doctor ever addressed this.  Seriously.  Water brings oxygen into your body.  No one, not one doctor, said you know, mild dehydration causes the blood to thicken.  I started noticing when I went for phlebotomies that my blood was really thick at certain times (not trying to gross you out, but it was part of my life for over 19 years to watch my blood go into a bag, and technically, I still have to keep an eye on it).  I was always so out of it before, and during the nurses would say drink, drink, drink.  One smart nurse finally hooked me up to an IV.  Duh.  That felt better. I didn’t know that my body was sucking the oxygen out from wherever it could find it, thus creating this sort of mini-storm of fatigue, mood swings, and basically quicksand feeling.
  4. You might suffer digestive problems.  Let’s talk about our colons.  They need some acknowledgement for all the shit they put up with.  << I couldn’t resist, but really.  I would be embarrassed about this, but that ship sailed years ago when my friend was diagnosed with colon cancer and had zero history and the only warning was she thought it might have been hemorrhoids.  I know I sound like my college biology teacher, and I can still hear her today, but she would yell to the class your ermmm feces says lots about your health.  Again, if this saves a life, I don’t mind saying stay hydrated and take note of any issues and see a doctor as needed.  Don’t be embarrassed about this as life is too short.
  5. Your headaches are increasing.  A very noticeable sign all the way down to your young child who is in sports.  A theory is that the dehydration feeling causes pressure in your brain to change.  Drink 2-3 cups of water immediately as that helps (in theory) to level out the fluid levels around your spinal cord.  I believe this to be true as I get enormous pressure and, I notice when I urinate that it is not the right color.  Ack!!  Those two go hand in hand.  Dark pee, headaches, drink more water.  Sorry not sorry.  Trying to be helpful and embarrassing at the same time.

The bottom line is, why don’t we talk about this with our health professionals?  Are we too embarrassed to mention these signs?  Our body is showing us in the only way it can that it is of dire importance that we notice the signs and signals it is giving us.  Liked this?  Here are 5 Steps to Being Healthier Today to continue on in this theme.  Just use the search button on the right hand side or the top tab “health” for more.  Want my newsletter?  That’s over there too.

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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

Tantrum Tuesday…

For my new followers, I apologize if I seem “normal”.  You can skip this post if you want and re-join me again after my rant.  No one asks for problems that I am aware of, so let me start out by saying that.  If you are holding your hand up in the back saying you do, then slap yourself with that hand.  On New Year’s Eve of 1998, most of my health issues started.  I won’t go into those old posts, but if you are interested, you can find them on here.  I have hereditary hemochromatosis and porphyria cutanea tarda to start out with.  To date, I have never met a person face-to-face with these two diseases together.  For the rest of my life, every six months, give or take me forgetting a month, I have phlebotomies, or pints of my blood taken.  For those of you who are lost, my blog includes a tab on hemochromatosis.

A few years ago, immense pain in my joints started.  It was without a doubt the worst thing I have ever felt in my life.  I could not move my shoulder.  I could not sleep.  I could hardly get around without wanting to cry.  I still went to work everyday.  I was not always pleasant, but I know who my real friends are.  If I offended someone during that time, I really didn’t give a damn.  Pain sucks.  You start to turn off some portion of yourself just to get by.  I didn’t want to see anyone.  I didn’t care.  I went to doctors for 6 more months before we found a link that one of my dear friends helped me find.  I knew there was a connection, but no one would believe me.  I had developed Hashimoto’s thyroiditis.

At the beginning of this year, a lump was found in my left breast.  I almost lost it.  Maybe for a while I did.  I was in pain again, only this time it was my breasts and I thought they were trying to kill me.  I didn’t know what to do, but I had to tell a few people as I had to take off work for the biopsy.  It came back that it was a benign cyst and the cause appeared to be fibrocystic breasts.  In the meantime, during all of this, I had also developed severe stomach pain and decided to go gluten-free to see if that would help.

Why am I telling you all of this?  Because I want you to know that when I write about moving forward, thinking positive and staying motivated that there are days I want to give up.  There are days I want to move to the top of a mountain and live out my life by myself.  Yes.  By. My. Self.  Then my van won’t start like yesterday and I am standing in the cold with a friend who is willing to wait and see if we can get the damn thing started (we didn’t).  And I am carpooling with my husband and we get into a erm, discussion about money, and I get mad at the start of my day.  Then I have to deal with multiple tiny issues at work that lead me to have even more stress, so that by the time he picks me up from work I want to scream.  We have to stop by the store and I see a man with a sign sitting in front and my eyes well up with tears.  Why can’t I have more money so I can give him some?  Why does this have to be one of those times when I feel like I can’t help anyone?  If I let myself cry now, I will not be able to get out of the car.  I want to save the world, I always do, but right now, I can’t help anyone until I am in a better place and it’s okay to realize that.  So this is my acknowledgement of that.  I will move forward and so will you.  If you are in this place with me right now, we got this.  Keep paddling, and if you don’t have a paddle, swim.

“I love the man that can smile in trouble, that can gather strength from distress, and grow brave by reflection. ‘Tis the business of little minds to shrink, but he whose heart is firm, and whose conscience approves his conduct, will pursue his principles unto death.
~Thomas Paine

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

Know your weakness…

My new take on “Know”vember…I found something I really need to share.  15 years ago, I was diagnosed with a disease.  It changed my life.  I haven’t been the same since then, and I won’t ever be able to go back.  If you knew me prior to this diagnosis, you would say I was a different person.  Sometime during my last year of college, my life began to spiral out of control.  Mood swings, depression, and fatigue came into my life with a vengeance.  My skin began to get thin and I bled easily.  It was a dark and scary time.  Sometimes, if I am not careful, I find myself slipping down that path.  I don’t realize why I am so distressed until I think back to my last phlebotomy.  By now, some of you are nodding your head in understanding.  You know this disease as well as I do.  You know your weakness and can recognize when your body is trying to tell you something isn’t right.  I get so busy that occasionally I ignore it and press on.  It always, always causes problems in my life when I do that.

I just found the most amazing video on this site to share with my family and friends.  If you are of European descent or have family with this disease, please watch this video.  It doesn’t explain everything because everyone is different, but it can help you to understand what your loved one is going through (scroll down, and it is a minute shorter than it says).

How to recognize Hereditary Hemochromatosis Symptoms

In a nutshell, why am I always trying to focus on the positive?  Because it is so hard for me to remain that way.  I just thought I needed to share my weakness with you tonight.  So the next time I go to the oncology office where I get my blood drawn for the rest of my life, I will continue to smile at my amazing nurse V, and focus on where I am going, not where I have been.

“The greatest mistake in the treatment of diseases is that there are physicians for the body and physicians for the soul, although the two cannot be separated.”  ~Plato

Metamorphosis…

Sitting here shaking my head at people who can’t see me and talking to the computer...not a good sign.  Of course, after what I went through, I guess I’ll excuse my behavior.  Let me back up a bit.  I realized earlier in the week that it was time for my maintenance phlebotomy and I had forgotten to schedule it.  I called my “emergency” hotline number.  This is a number that was given to me ONLY after 14 years of seeing the same nurse.  She knows I will not abuse it.  It connects me directly to her phone in one of the busiest Oncology/Hematology places ever.  Someone else answered yesterday, but luckily my fave nurse was there to save the day.  So I got scheduled immediately without a wait.

As I entered the treatment area today, several patients were already dozing in the arm chairs.  They are there for a much longer treatment than mine.  They have liquid hope in a bag attached to them, and I always say a silent prayer for them all when I arrive.  Some of you know that I was diagnosed with Hereditary Hemochromatosis and Porphyria Cutanea Tarda not long after I lost my grandmother to cancer.  Imagine picking a scab off the same wound all the time and thinking that next time it won’t hurt.  Yeah, it feels like that.

Today there was an elderly lady in the chair across from me wrapped up in a cocoon of the fluffiest blanket I had ever seen.  I could only just make out the top of her head and eyes.  My nurse came over and squeezed my arm so tight with the blood pressure cuff it left a mark, but I bruise easily anyway.  I couldn’t tell if the caterpillar lady was watching this, but I felt like she was.  After the biggest needle ever made was stuck in my arm, my pint of blood filled up in under 8 minutes.  I bled through the first bandage and the nurse had to come back.  After that, I asked for my usual ginger-ale and promised to sit still.  No IV needed.  Approximately one minute after that I felt sweat break out on my forehead.  Oh crap.  The nurse had retreated to her station and was chatting.  I felt sick in my stomach and knew what was about to happen.  I couldn’t get my feet up and my voice stopped working.  Hot.  Damn it, I am going to faint.  I cough loudly and the nurse asks if I am okay.  I rasp out no just in time for the other nurse to fly over and say “I can see it in her eyes.  Get your feet up!”  I am trying to lady.  The chair is not working.  Flip.  They are both there.  I manage to squeak out that I need that IV now.  I fervently wished I could cool off and avoid passing out.  The next thing I know she is pressing the blood pressure cuff back on me saying well, I guess I’ll have to change my report.  I said no adverse reactions.  I manage a “sorry” and we grin.  I really do love my nurse.

When I manage to get okay, she tells me the doc will be over after a while with her new PA and med student.  Great.  Show and tell with the weird disease lady.  I always love this part.  Sigh.  The tiny lady in the cocoon says something like “Wish you could change places with someone, eh?”  I manage a smile and reply “Actually, I am fine.  I have to come here for the rest of my life, so it’s okay.”  She sits up a little bit more.  I get the usual questions and I explain as best I can about how iron tried to kill me 14 years ago right before my wedding.  Just as our conversation starts to get interesting (me reassuring her she will be fine after finding out she is new to chemo), my posse rounds the corner, and I don’t mean that in a good way.  I always feel like an uncommon specimen when my doctor looks at me. I sigh inwardly again for the thousandth time as she launches into my story (as if I didn’t know it).

The nice elderly lady has emerged from her cocoon as her friendly husband arrives as well to drive her home.  He smiles pleasantly.  She isn’t as old as I thought and has dressed rather smartly for her visit today.  My heart lurches and I want her to get well.  She is wearing a nice hat that matches her gold and black ensemble.  What a beautiful butterfly she makes.  She will be okay.  I know it.  At last, my own hero arrives to drive me home.  What a way to start off Mother’s Day weekend, but at least I’m here.

“The most important thing in illness is never to lose heart.”  ~Nikolai Lenin

Not for the squeamish…

My bag o blood…

I have lost count of how many phlebotomies I have had over the years.  When this all started, I had no idea I would ever write about it.  The concept of the diseases alone were too scary for me to ever let anyone know what was going on.  It was easier for me to hide it back then.  But as I got older, I realized I could help people deal with their own private battles, so here I am.

I want to start off by saying that I have the most amazing nurse in the world.  I don’t think she realizes how much it means to me that she never questions me when I call, and that due to all the trouble I have had over the years trying to get appointments (the staff at the front desk changes each year), she remains there like a rock for me to lean on.  That being said, she pulled out the big guns today.  Ouch.  I am talking about needles.  Avert your eyes….

Oh it doesn’t look so bad once it’s in, but she says the words “big stick” right before she slides it through my flesh.  It has to be angled just right or the blood won’t flow correctly.  She puts the blood pressure cuff on for the right amount of pressure and then I squeeze a little ball resembling a red blood cell.  It didn’t want to work so well today.  Each time she tried to tape it in place so she could get a few samples off the pint, it stopped flowing.  So she sat there and pulled it out and massaged my vein.  We love it when the blood starts to flow quickly; however, it does make me light-headed to be able to fill a bag in 20 minutes or .  She won’t let me leave until I finish a can of ginger-ale.  Also, I told her about my blog, so she held the bag up for me today.

  Dracula would be proud.


“How blessed are some people, whose lives have no fears, no dreads; to whom sleep is a blessing that comes nightly, and brings nothing but sweet dreams .”  ~Bram Stoker

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

It’s just blood…

I’m not even sure how to start this post tonight.  I went to the doctor’s office today for one of my check-ups.  When most people say that, it involves some routine physical.  When I say that,  it involves a whole entourage of people.  I bet you didn’t know I had an entourage and now you want one too.  Anyway, it started about two weeks ago when I realized I needed to get a phlebotomy.  If you missed one of my earlier posts, a phlebotomy involves taking a pint of my blood.  I called to make an appointment with my doctor.  I had to listen to the message and press a bunch of numbers to get through.  Then I had to let them know who I wanted to speak to, and then leave a message and they would call me back because no one really answers the phone anymore.  With all of our technological “advances” we have created one of the most annoying systems in the world at doctor’s offices, but that’s another post.

I got a call back from the “scheduling” person.  She does not know me nor does she care about me.  All she cares about is scheduling me in.  I tried to explain I need an appointment with the doctor and nurses, not lab because the nurses go ahead and draw my blood.  Somehow I ended up with two appointments anyway.  I tried to call back and fix it, but got the same “why are you calling and who is this and who do you want to leave a message for?” deal.  I called the top-secret phone number the nurse I have been seeing for years gave me and she answered.  I was so happy.  I told her they were doing the same thing and I needed help.  She said, ignore them and let me get it straight for you.  She called back with my appointment time and everything was great.  I had to take off work in order to make it work because they don’t see anyone on Thursday for some reason.

So, my husband decides to go with me even though he usually does not.  We get called back and a lady takes me in the direction of the lab.  Already starting off wrong.  I ask what labs are ordered and she says the typical.  I tell her that I usually go to the nurses first and she stares at me and tells me to have a seat.  I ask her to clarify what labs are ordered, and ask her about the ferritin test.  She says it isn’t there.  I politely tell her a CBC does me no good really.  After much deliberation, she asks me what she is supposed to do about it, and I politely ask her to get the nurse.  She tells me to wait in this little room with my husband.  My husband knows what a hard time I have with the lab techs, and tells me I should write a note, or complain to the person in charge, etc.  I say in undertones, as the other patients are looking at us, that it would do no good as I am not the usual case.

I get escorted back and eyeballed by people like I have committed a crime.  I did not go to the lab.  Yup.  That’s right.  The nurse gets my vitals and tell me that the physician’s assistant will be with me in a moment.  My husband and I continue our discussion for a moment as he tells me more advice on how to handle this.  I’m sure it was good advice had I been listening, but considering he doesn’t have to deal with this, I tune him out.  Luckily, the PA comes in at that moment.  We discuss the phlebotomist in the lab and how her behavior was.  I get told to ignore her as the next time I come back, there will be a different lab person anyway.  The PA is cool as she tells me she understands that I know my condition better than others and let them look at me funny when I tell them that I need to speak with the nurses.  I ask her if there someway to please put in my file that after 13 years, I go to the nurses first.  No can do.  Too many screens.  What one person sees, another person doesn’t see, etc.  Brilliant!  Love modern advances in technology.

Here comes the exciting part, so get your popcorn.  I go back to the nurses area.  This area is designed to make cancer patients feel comfortable.  There are 3 sections and many armchairs with pillows in each section.  Tall IV stands are beside each chair.  On a busy day, every spot is filled up.  I got here early as there was only one other person in the section I was seated in.  Apparently, they have divided it up by doctors now and each doctor has their own nurses.  I get someone I have not seen.  Sigh.  I ask for my regular nurse only to find out she is off today.  Double sigh.  Eventually, this person comes over to me.  My husband is in the chair beside me and he holds my hand.  She starts by making the tourniquet way too tight.  Then remembers to check my blood pressure.  I let her do her job and try very hard not to tell her the usual way it is done.  She wipes down my forearm and I begin to worry.  That is not where my best vein is…hope she gets this right.  She slides the tube in my vein and it hurts, but I don’t flinch.  I never do unless they really hurt me as she was already shaking so I try to act like I am okay with this.  Secretly, I am not okay as I can already tell something is wrong.  She goes to get the blood and it doesn’t want to come out.  Great.  She pumps the vial and manages to get a little to test.  I am hoping that is enough, but apparently it is not.  Luckily, she grabs someone I know.

This nurse is in the other section and recognizes me.  She comes over and flushes my line and tries to fix what this lady did, but doesn’t have much luck.  The other lady is hovering and watching.  I casually mention that it would be best to put it higher up and they apologize for having to start all over again.  They get the big needle out and always say “big stick” like that helps me prepare.  Lady, I have to deal with this the rest of my life, let’s just do this.  Finally, the blood starts flowing.  I fill up a few vials.  Two hours have gone by at this point.  Eventually, the PA comes over and they realize I can have my pint of blood taken.  The first nurse comes back and starts my bag.  I almost forgot I get free soft drinks and crackers.  The place is starting to fill up and I wonder how my husband is doing.  It occurs to me that I don’t bring him for a reason.  I don’t want him to see this.  I think that’s how my grandmother felt when she went by herself.  I listen in to other people’s low conversation as this one man seems really happy.  That makes me happy.

Which brings me back to the thought that I am still lucky.  So I look down at my bag and it is 3/4 full so I ask the nurse if I can be finished now.  I am a bit light-headed, so she gets me an IV started.  I look over to my husband and I really want to leave now.  I am pretty tired.  Three hours later, we get to leave.  On the way home, I ask him to stop and get me a burger.  It’s the little things in life-like a cheeseburger with extra pickles that help.  That and the fact that when we get home, I get to sleep for the rest of the day.

“Rest when you’re weary.  Refresh and renew yourself, your body, your mind, your spirit.  Then get back to work.”  ~Ralph Marston

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