Tag Archive | Hypoparathyroidism

The Shadow of Fear

 

 

noun
noun: fear; plural noun: fears
  1. 1.
    an unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threat.

     

verb
verb: fear; 3rd person present: fears; past tense: feared; past participle: feared; gerund or present participle: fearing
  1. 1.
    be afraid of (someone or something) as likely to be dangerous, painful, or threatening.

 

As humans fear is a normal emotion.   It’s a survival instinct.   Everyone has some fear and anyone who says they have no fears is either lying to themselves or you.    It is a necessary emotion……

To a point.

If allowed our fears can become bigger than the reality.   We create a boulder to carry when we should only be carrying  a pebble.     It happens before we even know it!   Once we realize the truth of our fears, we can chip away at that boulder and return it to it’s pebble size.   But in order to do that, we must admit our fear and face them.

I’ve realized that I’ve been living on the edge of fear lately and it’s been holding me back.    I’ve never been one to worry about the “What if’s in life.”   I’ve just kind of rolled with it.   Since my diagnosis, I’ve been fearful.   Fearful of a calcium crash.   Fearful that my calcium will spike.   Fearful of the side effects of the medications I must now take.    Fearful that I’m going to end up with kidney stones which is a common side effect.    Fearful that I’m in over my head since I still can’t seem to find a doctor that “gets it.”

Then there is the part of me that thinks I could just stop taking everything and that I’m perfectly fine.   I mean I look fine.   I actually feel good right now which also brings up fear as my levels are too good.   Yes, I know that sounds strange but it’s true.   There is a fine line.    Anyway even though my PTH levels indicate that as much as I’d like it to not to be true, my body just isn’t working right.   So in this case the fear of not taking my meds is a good thing.

stubborn

But fear can also be a bad thing.

Fear can be used to hold us back.

I can’t let the not knowing how my body and how my calcium levels will react hold me back.    Any runner/athlete on any given day can be sidelined by a whole host of things out of their control.   You can do everything right and still have a bad day.    You can’t live in the shadow of fear.

So today I am starting to chip away at that boulder.    As FDR said, “The only thing we have to fear is fear itself.”   It is with this thought that I went out on my 3 mile run last night.     I didn’t do anything stupid and push myself into paces that I couldn’t hold.    What I did though is say that I am going to run 3 miles and run the whole thing.  I reminded myself that I ran a half marathon only a few months ago and my levels were much lower than they are now.     This does not mean that I’m giving up on the walk/run method.    This just means that I’ve realized that out of fear I may not have been pushing myself to do things that I should push myself to do.

It’s time I started remembering that no one knows what their day will bring and start facing it accordingly.

For now, I choose to embrace a new meaning of fear and once again try to live my life accordingly.   It won’t be easy and I’ve still got baggage to deal with, but I’m going to try.

 

Fear2

 

Again

One day at a time.

One run at a time.

 

Unstoppable

 

 

I am lucky.   I know that.   I know it could be so much worse.   I know there are people fighting much harder battles than me. Knowing this does not make it easier.   It actually makes it worse because of the guilt.

I’m a lucky girl, but I don’t always feel lucky. And I hate that feeling.   Who am I to complain when I have been so blessed and am so lucky?

A small voice whispers, “Me.”

I’m an avoider by nature.   I see nothing wrong with burying your hand in the sand.  The problem with that is eventually you realize that you can’t breath and you’ve made the situation so much worse.

I didn’t realize it until after my run today, but I’m kind of there now.   Remember this week started Chicago Marathon training.   I’ve stuck to the plan.  Three easy runs.  Three days in a row for three miles.   Easy Peasy.

Or in my mind it should have been.

Run

The first run I did at  my local YMCA on the treadmill.   The second run was a fun run with friends.   Then today I was on my own.   Things were going good.   The run in my mind was much harder than it should have been.   I mean seriously it’s only three miles. and the weather is perfect for running.   What more could a girl ask for?

On the run as often happens, my mind processes things.   It’s been a while since I’ve had one of these runs and I needed this time with my thoughts.   I’m keeping a nice easy pace.    Today I want to run the whole thing with no walking.   Should be easy enough.   Mission accomplished.

Here’s the thing though….   By the end of the run, I am literally huffing and puffing.   A lot.   I end the run at my house happy as can be.  I even snap a picture.   You can see that I’m tired.   You can see that I’m sweating pretty decently for a short run.

Run2

Here’s what you don’t see…..

At this point, my face is tingling.    My right arm is tingling.  This causes me irritation because IT WAS ONLY THREE MILES ON A COOL DAY.

If the picture was taken 5 minutes later, you would see me having a good cry.    It sounds bad and it wasn’t pretty, but I think it may have been just what I’ve needed.    During my run, I was thinking how far I had come with my running and where I am now.    It’s several major steps back.   I’m not even at square one anymore because at least when I started on this journey the only thing holding me back was myself.   That is not the case right now.   There is so much out of my control right now.   So many things that I never had to think about before.

Seriously.

It sucks.

But I’ve had my good cry which was well beyond due.   Yes, I’ve been dealing with the actual physical aspects but it’s time I deal and come to terms with the big picture.  I’m pulling my big girl panties on and I’m just going to keep moving forward.  I’m a lucky girl, but sometimes even a lucky girl needs a moment.   I may get where I was before in my running, but I need to accept where I am today.   I also need to accept that it’s ok.   In talking to others that have hypoparathyroidism the key is giving your body what it needs and taking it as it comes.  There are things in my control, but there are also things out of my control and there are things that change depending on the day.   So I will do what I can and start accepting what I can’t.   Giving up control is hard.

This disease will not stop me.

 

 

Not Backing Down

hy

I know what it feels like after you’ve run a half marathon.    I know what it feels like after running a marathon.    I even know what it feels like after running  50K.   When your an athlete whose run as many miles as I have you pay attention to these things.  I’ve trained my body to run on tired legs.   I always joke that I come from hearty stock because even though times my body has been sore, I’ve always recovered fairly quickly.   The day after the Philadelphia marathon, I was even wearing heals.   Like a bumble, I just bounce back.   I also think both the way that I have pushed my body in the past and know how to roll sore muscles are helpful now.   I know how to pay attention to the needs of my body.

Sometimes by the end of a busy day, my body feels like I’ve run a race that I haven’t run.

My legs are sore.   My back aches.   I’m exhausted.

In reading many comments and stories from people with this disease (hypoparathyroidism), I really believe that my training has set me up for success.   As much as it sucks, these are not feelings I’m unused to.   What sucks is feeling this way and not having a medal to show for it!

I keep hearing from my online support groups that I will get used to the “new normal” but that it takes a LONG time to get there.   That eventually you forget what it’s like to wake up without all the aches and such.   It’s a work in progress.   I think one of the things that takes getting used to is looking fine, but feeling like this.

Again it’s a work in progress. What further helps is that I’m pretty tenacious and head strong.   I will keep pushing through  even if things are harder to accomplish.   I will not give up as long as I can do the things that I want to do.

What does worry me as I start planning my Chicago Marathon training is if I feel like this without really doing much running, how will I feel once I’m training.    Training starts in a matter of weeks.    I need this just as much physically as I do mentally.   I will be prepared going in knowing it’s going to be harder this time around.   Knowing that it will be even more important when loosing calcium through sweat while training in the heart of summer, to replenish during a run and not wait for a crash.     I will be prepared to take care of myself after runs too.   Where in the past because I could get away with it, I was not the best about post stretching, rolling, or soaking in mineral salts.    I will ad that time into my training.

I am a runner.

I am an athlete.

I am a marathon runner and I’m not letting anything get in my way.

tenacious

 

 

 

Plugging Along

Most of us lead ordinary lives.   This is not necessarily a bad thing.   It is just a fact of life.   Most of have a pattern to our lives which changes over time.   My Mother refers to it as the “seasons of our lives.”    Right now I feel that I’m between seasons…..

As with the “seasons of our lives,”   we also have seasons in our training.

Right now I feel that I’m in between seasons……

I just came off the NJ Half.   A race that I went in under trained for, but still finished well and with a solid time of 2:20:23.    The race went well.   For the most part,  I felt good overall and it gave me hope that I will be ready to start Chicago Marathon training.    I’m to the point where I need to start preparing for my training.   First thing first is to put the actual date of the Marathon on my calendar.   When people ask me when it is, I truly only knew that it was in October.

Date:  October 8, 2017

152 days from today.

This means that training will start literally in a matter of weeks.

Oh Boy….

My mind is a flurry thinking about gearing up my training,  getting handle on calcium (hypoparathyroidism), figuring out nutritional and supplements,  and being a busy Mom of three.

Easy Peasy Lemon Squeezy….

treadingwater

Honestly right now I’m plugging along with the calcium, but I often feel like I’m just treading water.   There appears to be a fine line between keeping your head above water and letting yourself sink.    It feels like a constant state of not being able to plant your feet.    It is a strange feeling trying to keep your calcium high enough to not be too symptomatic but not so high as to cause other problems. Plus even with keeping my calcium high enough, it is still keeping it in the low range thereby figuring out how to deal with those symptoms.   Those that have dealt with it for a while do say that you eventually get used to the “new normal.”    I’m trying to believe them.

I’m looking forward to the day where I’ve figured it out a little (lot) better than I have right now.   It’s just a constant guessing game.    Plus I’ve come to the realization that what has changed most for me is that really overnight I started to feel my age if you will.   Although I do think that even if I don’t look it being in such good shape has helped with some of the symptoms.

But I will work it out.    I will get my head out of the sand.    I will start training.    Most of all, I will cross the finish line in Chicago.

  I’m trying to find the excitement.   It sounds bad, but I’m not excited about running.   I’m not happy about running it.   I’m not unhappy or unexcited either.   I’m just blah.   It’s not that I don’t want to run it.   It’s just right now I’m not feeling it.   But I’m not feeling a lot of things right now, so I’ll just go through the motions.

One day at a time.

One step at a time.

Every runner no matter what their health knows that nutrition plays a key role in not just their training but their general well being.    That is where I plan to start.

Off to make an appointment with nutritionist.

 

 

 

A New Chapter

We live in a society where strength is looked up to and any kind of weakness should be both stamped out, frowned upon and just wrong.   Asking for help is often seen to some (not all) as an almost sacrilegious thing.   We live in a society where if we don’t like something we just ignore it.   This holds true to so many things from politics to health.   The expression bury your head in the sand didn’t come from nowhere.

You see this in runners (myself included) who rather than deal with an injury may try to shake it off and run anyway.    I did this with my Plantar Fasciitis and also when I twisted my ankle training for the 50K.   It wasn’t until I was out about 2 miles after I twisted it that I knew that I wasn’t going to be able to run off the pain.   I also did it to when coming back from my surgery.   Trying to jump back in where I left off like everything was the same.  Some times you can’t run out the pain.   Some times you need to face it, deal with it, and treat it.

Why do we do these things?     When a friend comes to us in need, we don’t think less of them.   We don’t hold it against someone who has fallen ill or becomes injured.   Then why do we hold ourselves to different standards?

Why indeed?

This weekend I am going to run my first race post surgery.  My first race with hypoparathyroidism.

I am both excited and apprehensive at the same time.    I’ve got my arsenal all ready to go.

I originally signed up for the marathon.   Thank God that I was smart enough to know that was never going to happen.   I’m not even properly trained for the half marathon that I’m running.   Luckily for me though I’m not going in alone.   I’m going in with some friends and we are all going to do what we need to do to get to the finish line.

Even more lucky, these are friends that I trust to keep an eye on me.   I’ll be honest.   Part of me is a little nervous.   Not because I’m not trained enough which I’m not.  I’ve done races before not properly trained.   I’m nervous because this will be my first real test on how I will be able to run distance with my calcium issues.   It’s also a test for how much I need to prepare for Chicago Marathon training.   A base line if you will.

I’m not trained, but I’m still prepared.    I plan to pack my calcium tablets with me and take 2 before the start.   I also am heading a recommendation from a hyperparathyroidism athletes group to put Cal-Ez in my water.

Cal-Ez

I’m not thinking about pace.   Ok I’m thinking about but I know I need to just let it go. The ego is strong, but needs to be left in check.  This is not the day.   I must remind myself of that and let my ego go as this will be the day just to finish.     I am handling it like a test run:)   But a test run with a medal at the end!

This is the first run in a new chapter of my running.

On your mark

Get Set

Go!

Who remembers as a kid singing the song in Health Class about everything being connected?

“The hip bone’s connected to the back bone
The back bone’s connected to the neck bone,
The neck bone’s connected to the head bone,
Now shake dem skeleton bones!”

Cute song that helped us learn about how our bones were connected.   Then on our way we go.   As adults most of us never think about how inter-connected our bodies are and how interconnected everything really is.   Yes, as athletes we know about proper fueling but for most of us that is the extent of our thought process.

Then again.   Maybe that’s just me.

Yes, I do know the rule garbage in equals garbage out.

All that being said, for the most part as a grown up we pretty much know what is considered healthy and what isn’t and eat accordingly.    We really don’t give it much thought other than that.   Honestly, why would we?

The only time a person really starts to think about these things is when they need to.  I’ve been giving more thought to it recently.   They body is an amazing thing the way it works.   How it takes in nutrients and uses them.   How certain foods will help and certain foods will hurt with calcium absorption.   Yes, that’s really all I seem to care about right now.   Forgive me.   But it’s all interconnected.

So I’ve been doing my research, but it can be overwhelming.   Yes, we all know about dairy, but there is a whole host of other foods that are good too.    Then there is a whole host of foods that are not good for calcium absorption such as caffeine, salty foods, and high protein foods just to name a few.   This then creates a quandary.

Remember I had planned to go on my diet May 1rst.    Remember it was going to be a high protein diet because that is what worked for me in the past.   Well obviously it won’t work for me now.   Also, as an athlete I depend on replenish myself after a good workout with protein.   Should I continue with that pattern?   These are questions that I am asking myself now.   These are questions that I need answers to.

So it is all interconnected.

And this isn’t even getting into the discussion of how exercise effects calcium levels.

As of now, I’m reaching out to those who are more knowledgeable and I’m emailing some nutritionist.   I’m looking for an individual who looks at the big picture and can help me individualize something for me.    There are a lot of nutritionists out there.   The key is to find the one that will work well with me and as a plus will take insurance.   I’ve already called and my insurance does cover up to 3 per calendar year and unlimited if medically necessary.   When I asked what that was, they immediately went to a diabetic.   Well I will question if they tell me they won’t cover my visits (but that is a fight for another day).

It’s funny how things you never gave a thought to before suddenly fill your mind.

calcium-1xs87cq

Yes, It is Real.

 Yes, my running is coming along.   Yes, I’m getting stronger than I was before, but in my mind and body I knew that things still just weren’t right.   To the outsider looking in they might think that everything was ok.   I knew differently.   Mostly because as much as I talk, as much as I share; there is a whole host of things that I keep to myself.   Plus sometimes you begin to wonder, “is it me or is it because of the calcium levels.”

I really though that my thyroidectomy was just going to be a blip on the radar.  So many people in my inner circle either knew or even themselves had their thryroid removed.   It was just a simple procedure and then you just figure out what level of hormone pills to take.

Easy Peasy.

Yes, the doctors warned me of potential risks.   One of them actually being a problem with my calcium level.   But these were minor risks effecting less than 1% and really how hard is it to take calcium pills?   But just like the informational….  But there’s more.   So much more.

I’ve talked about the struggles that I’ve been having since coming back from my surgery.   I’ve mentioned that my calcium levels are never coming back.   I’ve accepted this.  The name for this is Hypoparathyroidism.    It is actually considered a rare disorder.   Yeah, me.   I like to be different.

Again, part of the problem is just trying to figure out if it’s me or my calcium.    Before my surgery a friend who had her thryoid removed gave me a piece of advice.   I’ll paraphrase.   She is also a runner, so she understands.   She said that I should remember that I am a marathon runner and that I know the things that my body can and have done.   If something doesn’t feel right after surgery, I will know because I know what I’m capable of doing.    I hold onto this advice as I try to sort out things.   It is with this thought that I am reminding myself that things just aren’t right when I get a full night sleep and am still exhausted and need a siesta during the day..

What I didn’t know though that I wasn’t alone.   It is a powerful thing when you realize that you are not the only one and it’s not just you.   It’s amazing the information that you can find on the World Wide Web that is actually useful.   The problem is weeding out the garbage.  I recently (like last night) stumbled upon a Facebook group for athletes who also have hypoparathyroidism.   Once I joined the group and started reading some of the posts, I wanted to cry.   Not because they were sad, but because I realized that I wasn’t alone.   I wasn’t babying myself.   I wasn’t making excuses.    These are things that have gone through my mind.    I realized that the “Suck it up Buttercup” mentality really didn’t apply.

From the site NORD (National Organization of Rare Disorders) on side effects of low calcium.

  • The severity of the condition can range from mild symptoms such as a tingling or numbness in the fingers, toes or around the lips (paresthesias) to severe muscle cramps and muscle spasms
  • Additional symptoms that may be associated with hypoparathyroidism include fatigue, generalized weakness, muscle aches, anxiety or nervousness, and headaches. Affected individuals may also have dry, coarse skin, brittle nails, and patchy hair loss such as the thinning of the eyebrows. S
  • Depression, irritability, confusion, disorientation, mood swings and loss of memory have also been reported in individuals with hypoparathyroidism.

Because it is so rare and because people hear “low calcium” levels,  most people (and I was previously one of them) think that calcium is only for strong bones and good hair, but it really does effect so much more.   Then when researching and as told from my doctor the potential side effects of the treatment which for me is a minimum of 5,000 mg of Calcium a day (8 pill minimum throughout the day) with another medicine (Calcitriol) to help my body absorb the calcium., there can be severe side effects.   You can end up with calcium deposits on the brain, kidney stones, and such.   Good times.    According to my doctor, the goal then is to keep my calcium level just high enough to be right at the bottom level of proposed calcium levels, but not too high to cause problems.   Sure.

Easy Peasy.

One of the blogs I read summed it up perfectly.   They said that treating calcium levels is very similar to how a diabetic has to regulate their insulin levels.   Most diabetics can tell by the way they feel if their levels are high or low.   It’s about paying attention to their bodies.   The difference is that a diabetic can easily check their insulin levels at home.   This is not the case for those with hypoparathyroidism.    So it’s about paying attention.   It’s about knowing your body.   It’s about knowing this is a real issue that requires constant care.

I’ve already realized that when I come back from a run where I’ve pushed it, I can feel it.   Sometimes, I will get a twitch in my face.   My muscles are sorer than I remember them ever being.    I’m learning to handle it.  It’s about knowing that I need to roll with it.    I’m now learning from those that have already figured things out.   Life is all about learning, adapting, and doing all that you can.

So I’m going to figure this out.

its-not-what-happens-to-you-but-how-you-react-to-it