Tag Archive | Medical

Unstoppable

Jun8

 

 

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

May20

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

 

 

 

A New Chapter

Apr28

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!

Apr11

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.

Apr8

 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:)

Mar5

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

 

 

Fake it Till You Feel it?

Jan7

My new expression really seems to be…..

I’m just not feeling it.

So true.

I know I need to get running again.   This week I actually did start.   I’m proud to say that I went out for 3 three mile runs.    They were not fast.   They were not pretty, but they were all in a different season.   The first one was on a nice day.   The second one it was a cold rain.   Then the last one was run on a cold day with snow covering the ground.   That should count for something.

I guess it does, but

I’m so not feeling it.

Last month I had signed up for a 10K trail race.   I was smart enough to know that I would not be ready for more than that.   I realized that really I wasn’t even ready for that.   I’m sure that I could have gone out and got it done.    I’ve done crazier things than that in the past.    Like last year at this same race I ran what I refer to as a surprise marathon.   I was feeling it.   I had the drive.

Today and most days right now….

I’m not feeling it.

not-feeling-it

It’s more than my running too.   It’s just the way I feel right now about most things.    I’m not sure if it’s hormonal.   I’m not sure if it is the medicine’s that I’ve been taking.   I’m not sure if is the lower calcium levels that I’ve been fighting.   I’m just not sure.   I just know that I have not been myself.   I’ve been going through the motions like everyone else, but my heart has just not been in it like normal.    I’m normally a happy go lucky kind of person and I know this just isn’t me.   I’m working on it though.

I have always heard that recognizing there is a problem is the first step.   I recognize that I’m just not myself and will talk to my doctor about it.

In the meantime, I’m going to continue with the fake it till you feel it mentality.   Besides whether I like it or not, I really am officially entering marathon training.   I will go through the motions until I find the joy that I normally get not just from running but life in general.

This weekend I plan to look at marathon training plans.   I do not plan to follow one to the letter T, but I do want to figure out which one I will use as a general guideline.   This marathon will be interesting.   My first big race back running after surgery.    My first race that I will be in charge of my training.    I think I will like the flexibility of it even if I won’t be as prepared as in the past.   Who knows….. I may surprise myself.

What plan do you follow for marathon training?

 

 

Why Not?

Dec6

So things are looking up.    After changing my medication and going for only 3 blood tests last week, my calcium level now falls into only “moderately low.”    That is opposed to the “if it goes any lower we are going to need to infuse you with calcium via a iv.”   So I will take the moderately low but better counts.    Things must be looking up because I have only gone for one blood test this week and will only go for one more.   I can feel that I’m on the upswing.

calcium-1xs87cq

That being said, I do know that weather it be the medicine I’m taking to improve my calcium that I’m just not “right” yet. I’m taking a medicine in conjunction with the 8 calcium pills a day that helps your body absorb the calcium.   Good times.    It is all tied with my calcium because my other levels are fine.   Today is a perfect example of not being on my  A game.   After taking kids to school, I met a friend for coffee.    By the time, I got home I was exhausted to the point that I actually climbed back into bed and took a short nap.  This is a big adjustment for someone who was running 40 miles a week and now hasn’t even gone around the block in 3 weeks or so.   I will get there, but this will take time.

That being said, I also know that Christmas is just around the corner.   There is baking to be done.   Gingerbread houses and marshmallows to be made.   There are presents to be bought, wrapped, and put under the tree which has yet to be brought home.   So I am not going to push it.   I love Christmas more than I love running.   Yes, I went there.

My running friends and I already have a plan how to get back in the game.   We all know that there really is no point in stressing out now, so come January we are all back in.   NO, this is NOT a resolution.   This is just giving ourselves time to not stress out about our running and we know our running shoes will be waiting for us come January 2nd because whose ready to run on the 1rst.    Besides by this time, I think I will be totally back on track.   Every day I’m feeling better.   Yes, I still can tell my calcium is low with slight tingles now in the face when it’s getting low.   This is a marked improvement from having fingers that clench up and muscles cramps.   One day at a time.

Now, we all know that I need motivation.   My one running friend is doing a half in April that she convinced me would be a good idea to sign up to run.   I was admit that I would not sign up for any races, but I thought maybe this wouldn’t be so bad.   Here’s the thing…. I’m nuts.   I admit it.   I go to the site and instead of clicking half, I register for the full.    But wait, I can explain….

As I told my friend, I don’t want to sound obnoxious.    I know it will come off that way, but considering I just ran a marathon less than a month ago signing up for just the half did not seem like it would challenge me enough.   I also thought about it (yes, very briefly but more since I signed up).   I am going to run and train for this marathon on my own terms.    I have run a few marathons now.    This is supposedly a nice flat course which really means nothing for 26 miles as it’s still 26 miles.   That being said, this will be the first marathon that I train on my own.  No Coach.   Before, I come up with a plan (you know I like plans) I will see where I am in my health, what I think I can do come April, and decide what I will train for.   I will then train, but I want to train with flexibility.    This does not mean that I will go easy on myself but I think I want to do this on my own this time.   It will be a learning experience and life is about learning and living.

So there you have it………

I’m running the NJ Marathon.

Why Not?

 

 

Down but NOT Out

Nov26

Patience

I’ve had surgery before.   I was prepared for that.    I know how to recovery from surgery and even though I’ve been told I’m a bad patient I think I’m a pretty good one.   I take my meds when I’m supposed to.   I’ve had more energy after having c-sections than I have after this procedure.   This I wasn’t prepared for.   I figured that I would bounce back to my normal self within a week.   Well it’s been a week and I’m not there yet.

For the most part I feel ok.   I’ve still got some soreness in my neck from the incision.   But there is more than that.   I’ve had some muscle pain in my shoulders and neck maybe from the way I’m holding my head.    Who knows?   Then there is the tingles, muscle spasms in the hand where my pointer finger locked up and I couldn’t bend it.   Didn’t last long but was freaky.   I want to feel like my normal self again.

I haven’t even  been doing much of anything.   To be honest, I’m not really ready to do much anyway.   I woke up today at 10:30 and by 2:30 I was ready for and took a nap.     This is not me and I don’t like it one bit.   Not at all.   Not to say that I haven’t been known to take an afternoon siesta on occasion, but this is different.    When I asked for advice, I was told rightly so that the body needs time to recovery from the trauma of surgery.   To think of how much energy it takes to recover from the flu and that one week really isn’t that much time.   I get this but patience really has never been my strong suit.   You might even say I’m an impatient person.

Add to the fact that this is my favorite time of year and I don’t feel like doing anything.   Although, I was very proactive and decorated my house presurgery so I do have that going for me.   I just thought that I would be back.

Today was the town Turkey Trot and as much as I loved seeing everyone’s photos, it did sting a little.   In my mind, I knew I wouldn’t be up to running it but my heart didn’t know it.   I’m also wondering what it is going to be like when I do finally get those running shoes back on.   Actually, I’m not even thinking of running.  (ok, I am).   I think that I will start with a walk.    That being said, I worry about how far and how fast I will be able to run once I get back out there.   It’s a concern.

A running friend who last year had the same procedure said that it will take time to make sure that I find the right dosage for my hormone levels.   I get that.   I just don’t like it.   Then I remind myself of the following:

  1.   In the whole scheme of things, this is nothing.
  2.  I’m very lucky that I have a supportive family/friends who are taking care of me
  3. That this is temporary
  4. People are dealing with much worse.

So it is all good, but I think I’m allowed and it is good to recognize the truth of how I’m feeling.

I may be down, but I’m not out….

 

 

All In Good Time

Nov23

It’s been a bit since I’ve done any running.    Really it hasn’t been long at all, but it feels like forever.   It will probably be another week or so until I lace up too.   Seeing as I’ve still got sutures and probably wouldn’t make it around the block, I see no rush anyway.   That being said, I think recovery is going pretty well.

15109506_10209965336322489_8547094914127662898_n

I’m still dealing with what appears to be low calcium levels which does cause me to get tingles in my hands, face, and sometimes feet, but nothing horrible.   This seems to be more so in the morning as night is when I go the longest without calcium supplements.   Hopefully, this is a temporary thing as it’s a little annoying.  Other than that, I would say things are looking pretty good.  Can’t really complain at all.   I’ve probably been getting more sleep than I’ve done in years.   Last night, I slept the entire night through.   Literally 8 hours straight.   I know.   Amazing stuff there!

I will say that although I’m not itching to lace up, I am thinking it.   I’m thinking about how much stamina I’m loosing while not running.   You know what they say, “if you don’t use it, your loose it.”   Seeing I didn’t have tons to loose to begin with I’m wondering how hard it’s going to be to get back out there.   I’ve purposely got nothing on the books to train for as I don’t want to rush back into something.

So as I’m thinking about these things, I sit down and open Facebook and see a memory from 2 years ago today.

Philly Marathon

Philly Marathon

My first Marathon.

 Only 2 short years ago.   I remind myself how far I’ve come.   That the impossible becomes possible.   That with hard work and determination there is nothing that is out of my grasp.    This recovery is just a minor hiccup and there is only more adventures to come.