Tag Archive | Hypoparathyroidism

Hello is it Me Your Looking For?

Aug3

Hello…… It’s been a hot minute. I thought I gave up blogging. I really didn’t think I had much to say anymore. I didn’t think anyone would miss it. Then I remembered that I started this blog for me and I missed it.

I think one of the reasons that I stopped blogging is because I didn’t really know where I fit in. When I started this blog, I was your average woman in her 40’s working on getting into shape by signing up for an event. I had goals. I had will. That’s what I blogged about. I was a middle of the pack runner who was driving to bbetter. I was making progress too. I had worked with a coach. I completed lots of events. I finished a 50K, multiple marathons and was training to run a 4 hour marathon. It was in reach.

Now I won’t get into how I blew it in 2016 running NYC Marathon like it was a half marathon and paying the price. I’ve already blogged about that. I had chances to correct that mistake….. or so I thought.

Two weeks after that race is when I had my thyroid removed. Those who have been here a while know that took me into the journey of Hypoparathyroidism. It has slowed me down. It has definitely put a speed bump in my path. It has done a lot, but what it has not done is cause me to give up.

It took a while, but I continued to push through. Learning along the way. While I continued to blog and train….. I wasn’t sure where I fit into it all. I wasn’t sure that those that were following my blog previously wanted to hear these new trials and tribulations because really they signed up for a running blog.

I tried…. I tried… I tried….. and tried some more. I just didn’t feel like I was being authentic with every post. This may have been why the posts became far and few between until they just stopped.

Again….. I never stopped.

I’m rebranding. If you’re looking for a traditional running blog, this may not be longer be where you want to be. Although truth be told, I’m not even sure who is her anymore….. The reason I like blogging is that often it feels like talking to myself. So if you’re here, please say Hello!

Hypopara is strange. It is the only time when the body is missing a hormone (PTH) where there is currently no FDA approved hormone replacement treatment available. It’s coming. So they say. Those of us in the Hypopara community have heard this before. We’ve had the rug pulled out from us when they took away Natpara. So we shall see and we shall continue to wait while going about our business.

Anyway, this blog will still focus on my running, but it is going to focus on my running as a Hypopara athlete. There is no one size fits all with Hypoparaa. Our bodies all handle things differently. Like everything in life, we each just do what we can. So if you are new to the blog as a Hypopara athlete, please say Hi too:)

Now that that is out-of-the-way…… Let me tell you what I’m up to.

I have just started training for a half marathon. This half is actually going to be used as a training run because my real goal is to complete the Quadruple Play Marathon Challenge…. NO IT IS NOT A MARATHON. It is a 3.8 trail run on Friday. Then Saturday a 5K followed shortly with a 10K. Then a Half Marathon on Sunday.

I have done this event before. More than once. I’ve done it Hypopara too. The last time I signed up for it, I was not ready. It broke me a little bit because it was my first and only DNS. I was not in a good spot with my calcium levels and training. I only was able to do the trail, 5k, & 10k. I never came back to do the Half. So there’s that. I’ve got something to prove. To no one else but myself.

Game on!

Bringing My A Game

Mar19

When I worked with a running coach a few years ago, she always had me come up with 3 goals prior to an event.

A Goal – A goal within reach, but one that you need to work for

B Goal – A doable goal

C Goal – What is the minimum that you will be happy with.

So for the NYC Half, I kept these goals to myself. I knew going into my training that I really would like to run the half in under 3 hours. While training, I did not train for this goal so much as realize that this was within reach if I pushed just enough. I mostly trained by feel and heart rate. I made sure to do my training runs at a push and my long runs slower than I felt I could push. I always wanted to finish a training run like I could do more if needed. I usually did too.

One thing that I was very conscious of during my training is that I did not want to add extra calcium. What I tried to do was to time my daily calcium in a way to incorporate into my runs.

It has taken me some time since my surgery to get to this point, but I finally finally finally came to the mindset of………. I want to run, but I need to run smart. All the time. I can not push the pace to the point where I need to add more calcium. While it temporarily will feel right, long term it is not for me.

Since my surgery, I have been fighting high urine calcium levels. At it’s highest it was 578. (For those not Hypopara and unfamiliar anything over 250 is high. For Hypopara, your doctors try to keep it in around 300)……. Now it was at the highest, when I was taking .5 calcitriol twice a day with calcium through out the day. I also took extra calcium to run runs the way that pushed my body. My levels have come down, but even with being careful they are steadily going back up. I am currently at levels over 350.

So what does this mean…… basically these higher levels are hard on my kidney’s. I am lucky that currently I have had no kidney issues; BUT I say this as my kidney functions have moderate loss of function. Not enough that I would notice, but until a PTH (Parathyroid Hormone that regulates calcium & phosphate in body) I will need to continue to take medication to regulate. These help me function like a normal person but also are hard on the kidneys. I am not willing to push my kidneys to the limit to run a pace that matters to no one.

Seriously, who cares about my pace?

For a while after my surgery, I did. I wanted to maintain where I was prior to surgery. I wanted to pretend that the surgery and Hypopara didn’t change me, but the truth of the matter it did. It was also about pride. I wanted to run the paces that I could. No lie, I did enjoy pushing myself. Running a Sub 2 half (prior to surgery). Running 9 minute paces. Being a front of the middle runner.

Guess what?

I am no longer a mid pack runner. I am a back of the pack runner. I am starting in the last wave and in some cases the last corral.

Here is what I’ve come to realize though……

I am starting. I am running…… I am still me. Sometimes you have to swallow your pride. Put it aside and know that it only matters to you. When I was able to put pride aside, I was able to train where I am and not where I wanted to be. I was able to train smart. To listen to my body. To run smarter and not harder. By doing that, I was able to actually do what I wanted to do.

I put pride aside. I made a realistic goal. If I hadn’t made it, I would have been ok. But the fact that I made it shows that I am doing what I need to do. Most of all, I did it by working smarter and not harder.

So what does this mean….

This means more running in my future. I even signed up for a fall race. One that I did previously. The Hat Trick. A 5k & 10K on a Saturday followed by a half on Sunday.

Crazy?

Yes.

Exciting?

You bet…. Can’t wait.

Stay tuned because believe it or not, there is more to talk about regarding the NYC Half. Although this is enough for today.

A Slow Ember

Feb18

I used to feel that I must give 100% to everything. Maybe even 110%. Just give it everything. Give it my all. The Go Big or Go Home mentality.

But what if I just want to go home? Ok not anymore, but that’s what happened. You can’t just give everything in your life 100%, because eventually you have nothing left to give.

I love to bake and have a home baking business…

I began a new career path becoming a preschool teacher in September working full time…

I like to run…

I have a family…

I have a life….

All of these things are important. All of these things pull at me. All of these things in the moment require 100%, but they can not consume me.

The problem was that was trying to do it all like the other things didn’t exist. Life does not take place in a vacuum. I never gave myself a break. I went from on thing to the next. I felt like I was failing at all of it because you can’t give it all 100% and have anything left for yourself. Maybe some of you can, but I can’t. Add to that my Hypoparathyroidism and my tank is usually not full anyway.

Balance. I’ve said it before. I will say it again.

Period.

Period.

Knowing when to say no. Knowing when you are at your limit. Knowing that it is Ok to enjoy things just for the sake of enjoying them. Knowing you get clarity when you step back and say…

ENOUGH

I love (not always and I do complain) to run, but that always went to bottom of list. This meant that I was at the bottom of the list. Running gives me time to both turn my brain off and give me time to think. If you are a runner, you get that. Yet, that always went to the bottom.

I also realized that while all the things I do are important, so are limits. Limits on the amount of time and energy I put into them. No matter how you slice is there are only 24 hours in a day. So learning to say no is ok. Learning to know when your plate is filled and also learning to plan things out o not to be overwhelming.

I am still working on this but one thing I need to remember is that if I should not be the last on the list. I don’t need to take every baking order that comes my way if it will not fit in my schedule. While my job is extremely important, I do need to give myself a break when I leave. I need to make time to make sure that I can do the things that I want to do.

I’ve been running. I’ve been making time. I’ve run a few 5K’s. I’ve made time to run with friends. I’ve been training. Today’s training was 8 miles in the cold.

I loved it. Nothing clears my mind like a good run.

So here is to running, finding balance and taking a nap on a Sunday afternoon.

More to follow soon as with this new found desire to find balance and do things for me, I have a goal. I may even have several goals. Goals that will help me retain my balance:)

Ready to Begin….. AGAIN!

Dec23

Time has passed.

I’ve rested.

Like really, really, really rested.

I had thought about it, but was not motivated. I could not force it. I could not fake it until I felt it. I just wasn’t there.

Not even a smidgen.

I couldn’t pretend. I couldn’t show up. It’s not even that I wasn’t motivated. It is that I just didn’t care. I didn’t miss running. I didn’t miss working out. I didn’t even have a spark.

I was tired. Like really, really tired. Now to be honest, I’m still tired. I’m still sore. I’ve still got a lot of things going on. Working full time, baking, and medical stuff. But there is a difference now.

I am actually ready to begin. I am not being forced into it. I want to do it. This is good now too because I got into the NYC Half Marathon. My training plan starts next week and here’s the thing……… I am excited to be starting. I am excited to try again.

I do also have a motivation. I had my physical earlier this month. Somethings expected. Things like being overweight. Cholesterol going up a little bit but not enough for medication which I am happy about. I don’t want to add anything else as the Hypopara is enough. Super High urine calcium levels as always (due to meds/calcium needed for the Hypopara) – Not unexpected, but concerning. Not much to do right now as I don’t qualify for the trial of the PTH therapy. The surprise was the pre-diabetes.

Whelp……….

That will be a wake up call.

Although this wasn’t what made me ready to start. This was the final motivation to do so. Timed perfectly with getting into the NYC Half.

So here is being ready to train. Missing the feeling of running and wanting to be better. What is nice is that I will be doing a recheck of my labs in March to see if a follow up is needed, but this is same time as the HM.

Here’s to doing better.

Here’s to feeling better.

And most of all….

Here is to actually wanting to Start again.

I’ve already taken the first step and started at a gym getting set up to work out.

I know it won’t be easy. I know my body will resist. I will be sore. I will be tired…… but here’s the thing

I can do hard things.

I am ready to do hard things.

I am ready….. really, really, ready.

Most of all, I want it this time.

It’s go time.

Just Put on the Shoes

Jul23

Giving up is a choice.

Starting is a choice.

Waiting, ignoring and waiting some more to start is also a choice.

I feel like I am always waiting for the shoe to drop. Waiting. Wondering. When is it going to drop and what will happen when it does.

Here is the thing. What if I stop waiting for the shoe to drop and put them on and just run with it.

Easier said than done, but I’m trying.

What you do when no one is watching is more important than when you have an audience. (I know that is pretty funny being as I’m writing this for my blog, but there are only a handful of you who read. So I’m good:) )

Here is the thing…. Everyone is doing their own thing. Focused on their own goals, dreams, and trying to figure out their own path. No two paths are ever the same even if they are parallel. Everyone also has a reason for where they are on their path.

For me….. (I know broken record)……. I was in a good place right before my thyroid surgery and becoming Hypopara. I was running the fastest I’ve run (the whole sub 2 NYC Half). I was at a good weight. I was also running longest distances with not just a marathon but completing my one and so far only 50k. Things were good. Right up until they weren’t.

Isn’t that the same for everyone though. No one knows what will happen in their lives. No one can predict with certainty where they will be, but that doesn’t mean that they can’t still decide where they want to go. I forgot that……

I’ve given up on having control thinking that my weight, my running, my everything was out of my control due to Hypopara, age and metabolism. Treding water just thinking that was all I could do. Silently struggling and not even knowing I was taking on water?

Often you don’t realize how much you have been struggling until you get to the side and hold on, looking back and thinking about the struggle. We live in a society where strength is revered. Being a Bad Ass is a complement. We are told to power through and push through. Never being told that we need and should take a moment to breathe.

It is only when we exhale, can we see how much we needed the air.

So here I am on the exhale realizing that I’ve been waiting for change to happen…… Yes, I’ve met with nutritionists, I’ve gone through motions,, I’ve complained, I’ve lamented, I’ve waited and waited and waited…… I’m not sure what I was waiting for, but think I finally realized what I was waiting for……….

I was waiting for me.

I was waiting for me to be sick and tired of making excuses even if they are valid. I was waiting to get the fire back that I was trying to force myself to have. I was waiting to decide that I’m not just going through the motions, but that I want to do them. I was waiting to decide that I am ready to set goals and actually stick to them. I was waiting to exhale.

So here I am setting concrete goals, working toward them and realizing that I will be doing them because I actually want to and not because I feel like I need to. My first event was almost 10 years ago. I had fire. I had drive and I had will and it was all internal.

I am there again.

Stay tuned……

Stepping Out of Fear

May22

Often we live in fear and don’t even realize it. We wait for the shoe to drop. We expect the worst. We don’t even realize that it is there, because it almost becomes part of us. What fear does most though is the way it holds us back. We think, if I do this then X will happen. I can’t do this because Y will happen. So then nothing happens. We stand still and fear wins even if we don’t recognize it as what it is.

I have been letting fear hold me back. Now, don’t get me wrong….. there is a HUGE difference between being responsible, smart and listening to experts advice. There is also something to be said for not going in all willy nilly and not taking facts into consideration.

FACTS……

I have Hypoparthyroidism

I need to balance keeping my serum calcium levels in check while keeping my urine levels in check. (Yes, it is harder than it sounds)

Currently, running longer distances requires more calcium supplements which raises urine calcium levels. As does running faster paces.

I am currently under the care of a Endocrinologist whom not only do I feel, but 100% know understands this crazy disorder.

I am very lucky!

So with all of these hard and true facts, there is also some truth that needs to be faced. Due to fear of pushing my body too hard, I realized that I have not been pushing it enough. There are also some extenuating circumstances.

EXTENUATING CIRCUMSTANCES……

There are only so many hours in the day and I have been burning the bridge at both ends….. between work, taking classes for CDA (Child Development Associate), my home baking business, my home, and trying to have a life; I have not been pushing myself to follow a routine.

But there is light at the tunnel. I have completed all my CDA classes, had the required evaluation and preparing to take the state test next month. I am also looking forward to only working 3 mornings a week over the summer and I realize I set the schedule for my home baking business.

Yesterday, I continued my goal of running one event a month. I haven’t been running or training as mentioned above. Yet, I ended up running (walking some) and finishing well.

As my friend said who I ran with (slightly paraphrasing) …….. You don’t run or train, yet you pull running a 5K out of your ass like you did the 10K in January. So shut up.

So with that….. I will not shut up because you know I can’t. What I will do though is stop letting the fear of failure, the fear of not being where I think I should be therefor keeping me from where I could go, and the fear of what if’s from keeping me from what I can do.

What I can do is face each day with hope, the knowledge that it will be what it will be and there are no guarantees.

Showing Up

Mar29

We show up for work. We show up for school. We show up for our friends, for all our responsibilities and we show up for so many things that we don’t even want to but feel we need to. We show up for everyone and everything else that often we forget to show up for ourselves.

Wait what????

We forget to show up for ourselves by letting people treat us wrong for too long. For not standing up for ourselves. For constantly putting the to do list before ourselves. No don’t get me wrong, there are times where it is pertinent and necessary for others and our to do list to come first. The problem is we often make that a pattern. We often make that the norm. We often say I need to do this, this, and this first. Then I will take care of myself

STOP THAT!

I realized that part of my issue with getting back on track is that before I would do a work out, before I would plan for my meals, before I would take care of myself; I felt I needed to take care of everything else. That everything else list has and always will be long long… Long… And never ending

I’m working towards my CDA. Lots of time there.

I started a home baking business and often have orders

I have a job outside the home that I am required to show up for.

I have a home and family that requires tending

Here’s the thing, though… I never put myself on the list or at the top of the list recently. And if I’m not on the list, then I’m not a priority. The things that I need to do for me are not getting done. I make sure everyone else in my home is taken care of up to, and including my pets. I forgot about me

Wow, many things on my to do list need to be done. There is still time in the day for me though. It will require planning/. It will require prioritizing. Most of all it will require knowing that I should….. No, that I need to be on the list as well!! So with that being said , I am making myself a priority. Yes cookies need to be baked, dinners need to be made and jobs need to be done, but there is still time for me.

Do you make time for you? So many of us especially mothers are used to putting everyone and everything before us but when the pattern does not allow for any time, there is a problem.

Since I have started putting myself on the list……

Workouts are getting done

My own meal planning is getting priority (loving meal service).

Feeling better and actually less stressed

How do you show up for yourself?

How Did I Get Here?

Mar23

I’m taking a stroll down memory lane as I have some new followers and people new to my journey. So I just want to take a stroll down memory lane as I feel like I am finally in a place of true acceptance, understanding and most of all hope! Yes, hope…..

When I first was told that I needed to have my thyroid removed due to a number of large nodules, I literally thought it was going to be a blip on the radar. I knew many people who had their thyroid out without any problems. My surgeon made it sound easy peasy lemon squeezy. He said the biggest complication might be to have to take extra calcium supplements. So no biggy. I was not concerned. My biggest concern was scheduling it around my racing and training schedule. I purposely scheduled it two weeks after running the 2016 NYC Marathon. I was training for a 4:30 but blew it running the first half like there wasn’t a second half. That is and was a whole different post. LOL…

Anywho….

After the surgery, we realized by not just my calcium levels but also the severe tetany that something was off. So I was diagnosed with Hypoparathyroidism and so the journey began. At the time, my whole focus was keeping my life, my running, and everything the way it was prior to surgery. I didn’t want to make any concessions. I didn’t want anything too change and I wanted to keep doing what I was doing. I wanted life to be like the surgeon told me and just have to take some extra calcium and go about my business. Period. End of Story…. Or so I thought.

At the time, I was seeing and endocrinologist who also had this same mindset. He just looked at Serum (blood) calcium levels and called it a day. It worked. It probably would still be working, but there would have been consequences. There was no running other tests to see how all that calcium and Calcitriol was affecting my body. There was just, your calcium levels are good and call it a day. But the “problem” was that I did my own research. I found the Hypopara Association and learned because you know you only have one body. What I learned of scared me. So I found a doctor who was not only well versed in Hypopara, but so well versed that she runs FDA studies and is known in Hypopara community. So things changed.

So in 2018, I saw this specialist who was concerned especially after running a 24 hour urine calcium test and it was 578. Normal level is 200 and for Hypopara, she said 300 in good. This high level can lead to lots of issues and non of them good especially for the kidneys. So we adjusted both calcium intake and lowered cacitriol too, This brought my serum calcium levels down to the low 8’s which is makes me live in the low calcium zone. The trick is to keep it just in the sweet spot. Really fun without a home monitoring test, but that is a different story.

There was a blip where I was on Natpara, a hormone replacement therapy. When I was on that for 6 months, life was good. Both serum and urine calcium levels were good. I felt good. I felt like me. It was a thing of beauty… Right up until it was recalled. The medicine worked just as intended but the issue was with dispensing mehanism which is what made the recall so frustrating to to those of us who knew it’s worth. Not much to do but roll with it.

Anyway, here we are years later. I’ve learned so much. What I’ve learned and finally come to terms with……. I can run faster. I can run longer distances. I can do so much, but to me for now I realized that the tradeoff of adding the extra calcium is no longer something I am willing to do. My urine calcium levels are still high even with lower serum calcium levels. They are not nearly as high as they used to be and I am “happy” with that. I just realized that long-term impact on my body is not worth pushing for short term gain. That is why as much a I would love to train and run another marathon, it is no longer in the card till another hormone replacement therapy is available. It is just not what my body needs. Besides, I am hopeful as there are new treatments on the horizone.

Besides, my body even at this level can do amazing things! This year, I have decided to do an event a month. Nothing longer than a 10K but probably going to be mostly 5 K’s. I am lucky. I am finally content….. Most of all, I am still moving!!!

Find Your Joy

Mar3

While no one believed me even though they knew I wasn’t really running or training, the truth is out there:). This is the first year that when NYC marathon lottery came out, I did not have even an inkling of an itch to put my name into it. I got the emails and was like… nope….. delete…. No thank you.

I just got the email from Sandy Hook Promise to put my name into for consideration for charity runner……. Nope….. not this year….. will continue to love and support the team….. but…. Nope…. Delete.

This is how I know I am finally, finally, finally at peace with not running so hard. Not training so hard. Honestly, I could take “so hard” out of those last two statements as I haven’t been doing either lately but I am trying to find my groove.

For right now, I think I might actually finally be at peace for what I am both physically and mentally able to do right now. I think I finally realized that for right now in my life this is not something that I need to or should be doing. I 100% believe that I am not done being a marathon runner and 100% believe there will come a time where I will both want and actually run another marathon. For right now though, I just do not need or want it in my life.

I am taking the Maria Kondo approach to my running. Does it bring me joy?

The answer has been no – not at those miles, not at feeling like it was something that was expected that I “needed” to do, or that I was doing just to do. There was no joy. No passion. So that begs the question, why put my body and mind through it? Running and training for anything more than a 10K has not been joyful. It has been to hard for many reasons. It shouldn’t be so hard.

Here is the thing too…….

Since I recognized and admitted this truth, I am moving more. I am doing yoga. I am doing stretching. I am doing some strength training. I am walking. I am finding the joy and health in recognizing that while my body is not anything close to perfect, it can still move.

Life is hard enough without making it harder on yourself for the sake of making it hard…… without adding something that we were forcing ourselves to think we needed to do it for various reasons. Since my surgery in 2016, I have said I needed to step back and give my body a break. Yet, I never did. I always had one “valid” reason after another why I needed to run another marathon, why I needed to keep pushing. It was always about I need to keep pushing….. If I give my body a rest, than somehow that shows how week I am. That the hypopara wins….

Guess what?

That is crap. Everyone’s body changes. Everyone’s goals changes. Yes, prior to my surgery I was chasing a sub 4 marathon. Guess what? I’m not going to get there. I wanted it and could have had it prior to surgery if I didn’t blow my pacing, but thats a different story. Anyway, I guess it’s been a long time coming and although I thought I’d done it before, but the fact that I kept signing up for marathons showed I really didn’t……… I get that my body is not the same. I get that for right now, I just don’t want to.

Let me be clear.

I do not want to run, train, or sign up for anything more than a 10K. It is freeing to not only say this but finally realizing that I really mean it. It is also freeing to say that I think that I will run long distances again…… ONLY when it will bring me joy.

Find your joy……..

Embrace your joy…..

Most of all……… Be Kind to yourself and know that what ever you do should both bring you joy and is enough.

Middle of the Road

Feb16

Showing up for ourselves seems easy enough, yet might be the hardest thing we do in our lives. We always make space for everyone else – For what we need to do for them……. What they need…….. What we can do to make the happy…….. on and on the list goes of what we will and can do for others.

Here is a news flash…….

Not only is it ok to show up for ourselves. Not only is it a necessity, but it should be at the top of the list not the bottom!

Today I had my meeting with my nutritionist. I will admit it, I thought not only more than once but up until I logged into my video appointment of cancelling. I had several very good reasons why cancelling (ok not good, but really good excuses). They all made sense from what does it matter to I haven’t done any of the things I was supposed this last month. I also admit that the only reason I showed up was not for myself but because I figured if I cancelled last minute I would still (rightfully) be charged for the appointment.

So I begrudgingly showed up.

It was the right thing to do mostly for myself even if that wasn’t what propelled me to log in.

I honestly told her that I almost didn’t show up because I wasn’t in the right space and didn’t know if anything we had been doing was even making a difference and worth it…… She’s good and we talked through it. I left in a much better thought pattern than I went in with. She also has my number more than I realized.

In talking to her, she pointed out that I am an all or nothing person. She was like that is wonderful on one hand because it propels you to run marathons and do amazing thing, but the flip side is not as good. So the goal this month is to try and be middle of the road and know that it is 100% ok to be middle of the road! Focus on what I can do. What is in my control. So maybe for right now I am not training the way I used to be, but that doesn’t mean that I need to be stationary. Middle of the road…….

I walked away with a focus for the next month not just on my nutrition goals but also on movement goals. Baby steps on both.

Nutrition….. I have breakfast down with my smoothies (yup, still do them). We are not focussing on actual goals this month as far as numbers of proteins vs carb and such. The focus is just to show up. To think about what I can do to meet my meal goals and how to get there. So by focusing on dinner, that might carry over to lunch as I am going to make extra portions to possibly utilize for lunches. I am also going to look into meal prep services to help get me back on track just being cautious of sodium. But one step at a time…. Which leads to movement

Right now my body is constantly sore. Legs often feel like they have done much more than they actually have done….. so lets take a step back. Slow down. Do something daily either a walk, stretching, but something every day. It doesn’t have to be all or nothing….. it can be middle of the road.

So here is to finding the middle of the road and realizing that it is a good space to be

Lastly I am going to send her my latest labs, so she can do some research to see if she can be of better service with nutritional needs. Told you she was good:)