Tag Archive | Medical

364 Days

So tomorrow marks one year on this magic carpet ride.   Last year at this time, I was prepping for my thyroidectomy.   You know the usually stuff you do prior to a surgery – make sure your will is up to date, make sure the house is clean, make sure the fridge is stocked, Oh and make sure Thanksgiving Dinner was ordered.

Going in I was prepared for the recovery of the surgery.   I was prepared with having to deal with getting my dosage right for my meds to replace my now missing thyroid.   Easy Peasy.    I really was not worried at all.    You see, I knew so many people who either had their thyroid removed or knew someone who had theirs removed.    Another ace in the hole was one of my sons although he has a thyroid, it has not functioned since birth.   To be honest, my only concern was that a surgeon was going to literally be slicing open my neck.   That was my main focus.   Everything else would just work itself out.

So now I am one day shy of my surgery and I realize that it wasn’t as easy as I thought it would be.   The blip on the screen was much bigger than I thought it would be.  Still trying to adjust the thryoid meds which is really what I attribute my 15 pound weight gain this last year too.   Oh and the fact that my running took a dive. It’s a work in progress.

This last year has been an adjustment both physically and mentally.   Prior to the surgery I in my mind was chasing a 4:15 marathon, completed a 50 K, and was pushing my limits.   I did not realize that post surgery dealing with parathyroid glands that decided that they no longer would want to function properly that my limits would change and change drastically.  I didn’t even know that there was such a thing as Parathyroid gland let alone 4 that were very important.

Over time, I may get back to where I was but realistically speaking I am not getting any younger.   In less than 2 years, I will be hitting a number many refer to as a milestone even, but we aren’t there yet!

Where we are is a celebration of where I am today.

Today

Is it where I want to be?   Not exactly.   That being said….

I ACTUALLY RAN THIS WHOLE THING.

There was no walking.   There was no stopping.   There was only running.   And while I will admit that it was so much harder than it used to be and I was so happy to hit the end, it is so much better than it has been.    Life gives you what it gives you.   Today it gave me 3 miles.   For today that is enough.   I admit that some days it’s not, but as I continually remind myself….. You can’t live in the past.    You can’t spend your life living the should of , could of, and would of’s of life.   You get what you get and you don’t get upset.   And my personal favorite that my sister hates….

It is What it is!

So today, I look back on not where I was prior to 11-18-2016, but how far I have come since then.    The support that my friends have given me has helped me continue to push on.    You have been there when I have complained about my aches, my pains, my feeling tired all the time,  and everything else in between.   So this is my shout out to you……   For listening when I complained.   For understanding.  For your ideas and suggestions.  For run/walking with me when I need to and when I need to again and everything in between.   It hasn’t been an easy year learning to deal with “the new normal,” but thanks for taking the trip with me.

 

PS – I’m still following my training plan for the January Half Marathon.   One week down:)

It’s Hard

Running is hard.

Not running when you want to is harder.

So I totally took last week off.   I’m supposed to be crossing training this week, but so far it hasn’t happened.   I will say though that I did do a whole lot of walking this past weekend, so that’s got to count.    I went with my eldest son for a prospective college weekend event.   This required lots of walking as we were a 10 minute walk from campus.   On top of that we walked and walked and walked around both campus and town.

I wisely had inserted my new orthopedics in my everyday sneakers.   Even with this I did feel discomfort in my left foot with the tendonitis.   It made me wonder what would happen if I ran.   I thought about testing that out, but figured since I have my Podiatry appointment today that I would wait.

As we know in every aspect of our life, sometimes doing the right thing is not the easiest thing.   Sometimes, we need to make hard choices.   Long term goals must take president over short term goals.

It’s hard because instant gratification feels so good

for now…..

I have run the Runner’s World Event 2 years in a row.   It is a great event and I really as whole can not not say enough good things about the actual event.     I enjoyed it so much that this year, I had planned to do the Grand Slam, 26.2 over the course of this coming weekend.

The event is still open for registration until the October 18th while anyone wishing to defer would have had to have made the choice a month ago.

Now I do understand why they have deferral deadlines.   I get it.   If not people would sign up for every race they even thought of doing and then just defer at  the last minute.   That would create a chaotic system where race directors could not possible plan.   I also get why they have a fee for deferrals.   Although I will say some are more fair than others in the fee department.    Runner’s World actually only charges $20 to defer.

BUT

I am annoyed.   Maybe wrongly so, but I still am annoyed.

I reached out to Runner’s World to see if I could defer and I even offered to provide medical documentation if necessary.    I got the standard answer of  “no exceptions.”

I know it’s not their fault.

I know why they have the rules in place that they do.

BUT…..

I do think they should make exceptions.   The world is not black and white and sometimes, you need to consider shades of grey

So now this weekend, I have a bib for an event that I can’t run.   I can’t defer and I can’t transfer.    As you would expect with an event this size, it cost more than a town 5K.    I’ve started getting   the emails for the event…  Bib pick-up, parking, and just the general pump up.   Each email is like a punch.

Each email makes me think….. hmmm, could I do it?

Then I remember that I’m sitting here with a heating pad on my foot.

Running is hard.

Not running is harder.

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How have you dealt with sitting out when all you wanted to do is RUN?

 

 

 

Validated

 

I was very happy after the Chicago Marathon to know that I would be seeing my Podiatrist a few days later.     As I said before, I knew that I had undone all his hard work during the race.     I didn’t need him to tell me, but the ultrasound of the tendon confirms it.  Validation is always nice even when it’s not good news.

On top of that, I had been ignoring pain in my right foot.   I’d been ignoring it because I had dealt with it before in my left for a year or so ago.  Plantar Faciitis.    But since I was going, I had him take a look at it.    Yup another validation.   Although the hobbling around was a big clue.   At least that he was able to give me a Cortisone shot for that.

I had to laugh though because he’s like heat the left foot for the tendon, but ice the right for the Plantar Faciitis.   Talk about running hot and cold!

I have to say that it is nice   to have a Podiatrist that understands the anatomy or a runner and explains thing too.  Anyway, he then goes on to ask about my upcoming schedule.   I am supposed to do the Runner’s World Grand Slam in two weeks (26.2 over 3 days).   He then proceeds because he knows how us runners can be to ask if maybe I could not run for the whole next week or so  and not do the race because in the long term it won’t be good for my feet.

“Rest is the best thing.”

Hmmmmm…….

Well at least this also validates all the pain that I was in in Chicago.

I could do with a little less validation:)

Ha!

Validated

 

 

Creeping Up There….

I went out yesterday for what should have been a “easy” 6 miles.    Even skipping my normal training in Vermont, these 6 miles shouldn’t have been that difficult.   I was not in the mood to keep track of time, so I decided to just keep the pace slow and I would give myself a walk break every mile.   Seemed like the way to go.

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As you can see from the long red and orange line, even at these paces I was working hard.   Harder than I feel that I should, but I imagine the paces don’t really tell it all as it evens out with the walking.  Still need to work on it.   Part of the problem is that in the 8 months since my surgery I have gained 10 pounds.    I’ve never been what one would call petite.   That being said, I had remained steady in my weight for many years.   As I’ve blogged before in Laying It Out There even though the numbers never changed, I could tell that it was redistributing with added muscle.   Sadly, I can not say that now.

Part of the weight gain I attribute to not exercising as much post surgery.   Part of it might be from thyroid surgery while getting my levels correct.  Part of it might be Christmas and winter coming during this non running time.   While I don’t care about the extra weight per se, I do care that my clothes are not necessarily fitting the way that I like them.   I also think this is part of why I am struggling a bit with my running.    Yes, my legs are more sore than before, but that doesn’t account for all the heavy breathing.

Now is the what to do, what to do moment.   I honestly and whole hardheartedly hate dieting.   It’s not my thing baby.   

That being said, I am creeping up to another big milestone that I do think I would be upset to hit as it would be how much I weighed when I was pregnant.

  I  know that with my hypoparathyroidism, I do need to do better with my diet.    It might help with the muscle cramps and other issues.    I have toyed with my diet for this reason, but never committed especially since I still think my parathyroid are going to bounce back and work properly.  I keep waiting for the doctor to tell me they made a mistake.   I know.   I know.   It’s a foolish pipe dream, but I still can’t fully admit that this is permanent and my life yet.   It’s a work in progress.

So maybe it is past time to meet with the nutritionist that I called and never followed up with an appointment.   Not for my clothes.   Not for the way I look, but for my health as I really need to eat a diet with less salt and more calcium rich foods.    There has been much discussion in my hypoparathyroid groups on what is a good diet and I really need to start paying attention.   Also, I really need to figure out proper fully for runs.

So maybe I could turn this all around.   You know make lemonade out of lemon kind of thing.

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Moving forward is all you can do as sitting still is not an option.

 

 

 

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

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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

 

 

 

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.

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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

 

 

The Struggle is Real:)

For those who have been here you know that I’ve been struggling a little recently.  I could tell that I’ve been off both emotionally and physically.  I recently changed the way that I’ve been taking my medicine and I think the change is working.    I was waking up and taking my thyroid medicine, 2 of the 8 calcium pills that I take during the day, and another pill to help my body to absorb the calcium.   It now appears that when my thyroid was removed, my parathyroid glands were damaged or have decided they need an extended vacation.   There is a chance they could still bounce back and start working but it seems unlikely at this point.  Surgery was 3 months ago and most people are back to normal within two  weeks.   My doctor did say in rare cases it could take up to 6 months, but I’m not hopeful at this point.

My last blood work showed that my calcium was just under the normal limit.   This got me thinking that maybe I shouldn’t be taking everything at once in the morning.   I’ve never been a pill or medicine person, so maybe it was just too much for my body.   After talking to my pharmacist, I implement the change.   It has only been going on two weeks, but I really think it is making a difference.   I guess we will see when I go for my blood count again in two weeks.  I already think my calcium will be on target with the changes or at least I hope so.   I can tell my nails are not as brittle, but I’ve still got really dry skin.  Your guess is as good as mine.

And you thought calcium was just for strong bone and teeth.   Who knew calcium was so important?  Not me.  Live and learn.   It is important for a whole host of reason.

I do think though even if I have to tweak the calcium dosage that my thyroid levels should be good.   My doctor upped my dose a month ago and I think that those levels will be on target.   I have more energy.   I am also starting to get  back to my old self which I think getting back into my old routine is helping with.   I’m paying attention.

So what is that routine….

I’m still not where I was, but the good news is I don’t need to be there right now.   Since I wisely switched from the NJ Marathon to the Half Marathon, I don’t feel the need to push myself to the 40 miles a week I was running presurgery.   I do hope to build to a 20 to 25 a week, but I’m in no hurry.  My goal for NJ Half is just to finish.  Period.  End of Story.

Now that I’m looking forward, I also want to take time to reflect on my 2016 and how I fared.   This will allow me to FINALLY see what goals if any I want to set this year.   I’ll let you know how that goes tomorrow.

un-slumping