When life gives you lemons…

Okay, so yes, I normally post happy-happy, joy-joy things.  Today, this is what I want to say:

Yesterday, I ate something and had an allergic reaction.  It was rather small, but my lips started swelling and feeling like they were on fire.  I have not been diagnosed with food allergies…yet.  Apparently, that will be added to this lovely concoction that is my life.  Fine.  Whatever.  Let’s move on.  I took an allergy pill last night and went to bed.  Today, they were still swollen, and it’s my daughter’s birthday.  My other daughter has been sick since Monday.  My dad went into the ER the other night, but is fine.  I had a field trip.  To an animal farm.  When the temperature was registering, get this, 89 degrees after a freakish cold front last week.  Fine.  Whatever.  Let’s move this crap along.  I have a genetic photosensitivity disorder as some of you recall.  So, I had my umbrella for today, and got everything together and arrived with my class to see animals.  On a hot, sunny day.

I immediately started sneezing.  Like not a little.  Like every 5 minutes and it was several times in a row…the forceful pee-droplet kind of sneeze.  You know those.  Great.  I motioned to my helpers to take over so I could find a potty, stop sneezing, and hopefully live.  A woman saw me and asked if I needed a Benadryl.  Thankfully, I said yes.  By the time the bless-ed trip was over, I was ready to have a lie down.  Once we got back to school, I assumed I would be better.  Think again.  I ate lunch and my face was on fire.  My lips started swelling more.  A lady saw me and said at least I didn’t have to pay for Botox.  Awesome.  So, umm, I went to the allergy doctor and he gave me some meds.  I have food allergy testing as well as the rest of it over the course of this month.  I am still trying to make sense of all of this.  I know there is no such thing as normal, but really, a little break would be nice.  Jesus take the wheel…over to that guy who is having fun.

“I believe when life gives you lemons, you should make lemonade…and try to find someone whose life has given them vodka, and have a party.”  ~Ron White

 

Systematize your life…

I used the free thesaurus for this definition…it says to put in order.  I feel like I have been attempting to “systematize” my life for a long time now.  It’s about as effective as trying to catch popcorn kernels in an air popper.  I realize this is life.  This is what it’s about.  There are people with me who are trying to help me along the way.  Today was one of those days.

I have been feeling sluggish and the brain fog was starting to get thick.  It occurred to me I needed to call my vamps and set up the 6 month appointment.  Ha.  Um, well I missed it by a few months.  Hmm.  Okay, so I really needed to go.  Anyway, here is what it looked like today (avert your eyes).

This actually looks good…the tiny beach ball made me think of summer.  The needle slipped a bit at one point so excuse my blood.  A bit later my nurse ahhh, accidentally stuck her finger with a clean syringe she was using to get a vial of blood from me.  This has not happened in 15 years.  I felt really bad, but she said she has done it before.  She was very excited about the news from the Vatican today and was a wee bit distracted.  Anyway, I just wanted to point out that if you have some things that need doing, don’t get sidetracked.  Try out my new word and make your appointments a priority.

“If you spend too much time thinking about a thing, you’ll never get it done.” – Bruce Lee

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:

That 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.

 

 

Here 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

Eating healthy makes me hungry…

I feel like Paula Deen, on a desert island, without butter.  Okay, maybe not that extreme, but I am a Southerner trying to give up sweet tea, so it is nearly as bad.  Apparently sugar is the devil.  Who knew?  Sigh.  Not anyone in my family that’s for sure.  I don’t mean that in a bad way, but country folks raise you to eat everything and I do mean everything that is on your plate.  That’s the way my dad was raised and my grandma still thinks her food must be horrible if you don’t have thirds of everything.  Especially that jello salad concoction with nuts.  Never mind what it looks like, just eat it.

Then you take the other side of the family.  Wine could possibly be a meal by itself, but since that looks bad we serve it with plates of cheese and meat.  Then we have dessert wine to go with it.  I blame the French.  That would be my ancestors.  Anyway, the point is, we do like our food and wine.  My mom and I have come to the realization that this cycle has to stop.  Okay, so my mom hasn’t given up the wine yet, but perhaps she will taper off.  Maybe.  Not gonna hold my breath on that one, but moving on…apple/tree.

I am trying to make healthy meals for my family.  I know it’s evil of me to force this “healthy” mess on them, but I like to watch them suffer.  No, that’s not quite right.  I like to make my youngest try new foods without trying to hold her breath and chew.  That was fun tonight.  I made one of my recipes from Pinterest (who knew you could actually use what you pinned there), and coerced asked her to take a bite.  She ate it, without hiding it in the napkin, I mean I don’t know who would do that, but she did eat it.  It also was NOT stuffed under her plate when she got up.  Again, not naming names, but I never would have done that as a child with squash.  Because it is 1:30ish in the morning, I am not adding pictures.  I couldn’t sleep because my stomach was growling…I am sure I ate enough.

So if you happen to be in the same boat I am in, fighting to lose weight either because you have an illness or you just want to get in shape, grab a paddle and we’ll start rowing to get Paula.  I can give up sweet tea if she gives up the butter.  From my kitchen to yours.  Night ya’ll.

“Down South, even our vegetables have some pig hidden somewhere in it. A vegetable isn’t a vegetable without a little ham hock.”  ~Paula Deen

P.S.  I adore Paula.  She reminds me of my grandma making sweets in the kitchen:)

Invisible you…

I haven’t posted about this in a while, but it doesn’t mean I have forgotten about you.  I live with it everyday, so you are in my thoughts.  For those of you who are new to my blog, I am talking about invisible diseases.  The kind where you have symptoms, have gone to doctors and they can’t seem to figure out what is wrong with you.  I recently found this website and wanted to share it here.  I am in different online support groups, and even if we have slightly different problems, the root of the problem is always the same.  Getting someone to listen, really listen to you, and understand where you are coming from.

The majority of us are more educated about our illnesses as a result of our ongoing frustration and research in order to find some ray of hope in our daily struggles.  I never stop reading.  I want to stay ahead of the game.  As many of you are aware, I have hereditary hemochromatosis that caused a few other things to spiral out of control.  The latest thing that happened was stomach pain in the past year.  I have started “trying” to go gluten-free, but admit I haven’t been as focused on it as I could.  Today I went to the bookstore with a friend of mine and picked up a copy of The Eat-Clean Diet Stripped.  I feel like I hit a dead-end and I needed some new thoughts, so I wanted to see this in action.  I am trying to change my eating for exactly 28 days withOUT cheating (ahem seriously) and see how I feel.  I will definitely let you know.  In the meantime, I am still pinning gluten-free recipes, moderating my exercise, and trying to reduce stress in my life.  Ha ha ha ha, “reduce stress”.  Where was I?

Oh, let me know if you have made any changes my friends, and the results you are seeing.  One of my blogger friends just posted something the other day about running a half-marathon soon.  Way to go!  Let me know what you are doing to move forward.  I appreciate all of your support and I am right here with you.  Life is about not giving up, and helping yourself first.

“Remember, if you ever need a helping hand, it’s at the end of your arm, as you get older, remember you have another hand: The first is to help yourself, the second is to help others.”  ~Audrey Hepburn

And that my friends, is post 200:)  Bringing it right back around where I started.

Unsettled…

I haven’t written anything in a few days.  I’ve had plenty of ideas, but after hearing about the Colorado movie theater massacre, I couldn’t seem to make my thoughts coalesce.  The big question of WHY always jumps into my head at hearing news like this.  Then I realize I need to push that thought away.  You can’t really explain crazy.  My next thought is always wouldn’t someone notice if the person was acting angry or strange?  But what if he always acted like that or had no friends.  My third thought, surprisingly, is always about the crazy person’s family.  I have no idea why, but I always wonder what in the world could have happened that was so bad it pushed them over the edge?  Did their family not notice?  Again, I can’t answer these questions.  I just can’t seem to wrap my head around it.

In a photo album yellowed with age rests the clippings of the headlines.  Beside that I have his picture, one I took on a ski trip we went on, and near it is his obituary.  I saved all the headlines pertaining to his shooting, and they sit beside the funeral service pamphlet.  It wasn’t supposed to happen that way, but it did.  The fight after school one day, a harmless stupid fight that 16 year old boys have all the time, ended with the other boy bringing a gun.  For a very long time I hated guns.  But this is not about a political stance, this is about life.  It’s not the gun, it’s the person using it.  It took me a long time to realize that.

I can remember where I was for all of the horrific acts I have heard about over the years.  I go through the motions for a few days after, not really focusing.  I try to shield my children from the news as best I can, because I want to be the one to explain it, not the media.  I wait and get all the facts together, and then I tell them myself, in the best way I know how.  How do I tell them it will be okay?  I don’t.  But this quote helps explain it for me:

“Love is stronger than death even though it can’t stop death from happening, but no matter how hard death tries it can’t separate people from love. It can’t take away our memories either. In the end, life is stronger than death.”  ~ Unknown 

A leap of faith…

Hey guys and gals, did you know that today is Rare Disease Day?  I would like to say hello to all of my friends out there who suffer from various afflictions.  I would also like to say that if you are newly diagnosed with any disease, get a notebook now and start documenting your symptoms, test results, and progress.  It really does make your life easier that way.  You can bring the journal to your appointments with any questions you have.  If you are like me, you might even do research on your own and come up with questions about various tests and levels.

For example, when I was researching Hereditary Hemochromatosis, I discovered a type of test that my doctor had never ordered before and I also realized that I was not getting phlebotomies enough.  I needed to go every 6 months for the rest of my life since I also had Porphyria Cutanea Tarda.  I was “lucky” in a sense as I realized early on that the PCT bumps or blisters appeared when I was in dire need of a phlebotomy.  I started paying more attention to the signs my body was trying to show me and relied less on what the doctor said I needed to do.  They were using more caution with my treatment and I believed in being aggressive and hitting this thing head on.  Kind of a “go big or go home” type of philosophy.  I want to be around for as long as I can without pain, and live a “normal” life.  My theories started working, but I have also changed numerous things about my lifestyle based on hours of research.

Right now, I know someone who is suffering because their child is also going through some things.  My advice to this friend is don’t give up.  The answers are out there, but be aggressive.  Normally I wouldn’t advise this, but I know that she has tried to get answers from everywhere just like I once did.  If you can narrow down your symptoms, time of day, food choices, and duration this has lasted you will find the answers.  I know what it feels like to be in pain and sometimes you have to take that leap of faith.  Things will get better and there is hope.  Find a support group for people who are going through the same thing.  You are not alone in this fight.

“Be faithful in small things because it is in them that your strength lies.”  ~Mother Teresa

For my health groupies…

I haven’t posted a health piece in a while, but I found something many of you would find interesting.  I feel that it is important to stay in the know about whatever condition you have.  If you use the search button on my blog, you can look up things I have written about Hashimoto’s disease, porphyria cutanea tarda, and hereditary hemochromatosis, or the “Celtic Curse” as some have nicknamed it.  Even if you don’t have these conditions, it is always good to get regular blood work.  I certainly never dreamed at the age of 22 I would be diagnosed with PCT; however, it is what you do after a diagnosis that matters.

Phase one: you go through many emotions.  First, you think the doctor is wrong or some underpaid lab person has totally messed up your results.  Next, you do what the doctor says NOT to do.  “Don’t Google this disease until we are certain.”  Ha ha ha.  Yeah, that was funny.  As soon as I told my mom, between the two of us we had read everything there was written at the time on porphyria.  That was a fun evening.  Finally, comes the acceptance of the results.  You already knew that every symptom sounded like you, but sadly, you didn’t want to admit it to yourself.  You are now ready for phase two, living with the disease.

Someone posted this in one of my groups, and I think you will find it true…Health Central has an article on the top 10 things not to say to a Fibromyalgia patient, but it actually applies to all chronic pain/fatigue conditions.  Try not to wring the person’s neck when they tell you to get more sleep. Oh yeah, and for some of us, the part where someone says at least it’s not fatal, well it can be if it goes undiagnosed. We know you mean well.

“I’m exhausted trying to stay healthy.”  ~Steve Yzerman