Archives

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.

Tell Me Why?

Feb21

I’ve been thinking a lot about my Why?

Why can’t I loose weight?

Why is it so hard to start and so easy to give up?

Why does it matter because I’m at the point as hard as I try it’s not working?

Why are my legs so sore all the time?

Why don’t I have the energy I use to have?

Why does it even matter at this point?

Why? Why? Why? Why????

Some answers are easy enough and may sound like a broken record.

I don’t have the energy and my muscles are sore because of the low calcium due to the Hypoparathyroidism. That in leads to the why can’t I loos weight because you have to be mor active for that to happen, but there are other factors in play. You know the “a woman your age” factor. They “your metabolism isn’t what it used to be factor.” Plus I will say that due to the lack of energy and other unknown reasons many in the hypopara community often speak of the difficulty of loosing weight. Although I think based on the massive diet industry that is not unique to us but does add another layer.

I was recently looking at running pictures prior to my surgery.

The days that I was training hard, running fast (sub 2 half) and kicking ass. I had drive. I had ambition. I had the ability to push myself past where I thought it could go. And I’m now in the chicken or egg stage because I don’t know if I no longer have this drive because I know I can’t push myself or if I stopped pushing myself and lost the drive. To be honest though, I think it is because I realized that in order to run the long miles, in order to run the faster paces, in order to expel so much energy that means taking more calcium which in the long run is not what my body needs (the high urine calcium levels show that pretty accurately). I know I can do it. I know I can just pop more calcium and my blood calcium levels will remain stable, but that isn’t something I’m willing to do. You only get one body and I’m trying to do the best that I can.

I have said that I won’t run another marathon until I am back on some (like there are many to choose from) PTH hormone replacement therapy. Natpara isn’t coming back. There is a new one on the horizon (TransCon) but is not FDA approved. Then there is the real worry that even when approved that it will be cost prohibited and insurance won’t cover it. When I was on Natpara, they had a rebate plan to make it “affordable” as when I say it was big money I mean it was big money. Like $10,000 a month money without rebate. Ascendis Pharma owner of TransCon in an earnings call made it seem like there would be no rebate since they literally own the corner of this therapy and it will be a money maker. So there’s that….

Anywho….

Last week when talking to the Nutrionist I said it’s been a roller coaster because I just can’t seem to care because nothing I do is making a difference. I can’t eat my way out of Hypopara. I can’t change my diet enough to not take the calictriol and all the calcium that is so hard on the kidneys. So that lead me to be like….WTF I might as well just eat that pint of Ben and Jerry’s. She got it and she is actually going to do some research on Hypopara to see if there is something we can do for my diet to add more natural calcium that might not be so hard on the kidneys. Between that and FINALLY being able to get an appointment with a specialist who is not only familiar but an expert on hypopara, I have a little hope. Although something the Nutritionist said did stick with me…….

She pointed out (paraphrasing) that while working with her and following the plan might not actually be doing the magic trick I wanted, it is still beneficial. In that it can help to keep other health issues at bay – Keep my cholesterol in check (as it is just under being high). Keep my sugar levels in check. So many other health issues from hypertension to diabetes to even my sleep apnea can benefit from following a healthy diet.

So theres that.

So how am I doing with my goals of dinner and exercise? I’m making progress. I’m being more intentional. Most of all I’m trying.

My why for so long was to reach for something that for now is just out of reach. My why needs to be to just do the best I can with the hand that I have been dealt. Like running a race, life is about learning to bob and weave. I kind of forgot that…

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:)

Living with Hypoparathyroidism

Feb15

I have a confession to make……

I miss Running.

I miss running fast.

I miss competing.

I miss waking up and not feeling like I’ve run a marathon when I’ve done nothing.

I miss having a body that works the way it is supposed to.

Yes, I am having a pity party today. It happens from time to time. You would think after 7 years of having Hypopartyhroidism that it wouldn’t, especially when I know how lucky I am compared to others that struggle so much more. That being said, my struggles and pity party don’t take away from their struggles or any struggles you are having. We all have our baggage filled with things we wish we didn’t have to carry or wish on anyone else.

Here’s the thing…..

I am tired of constantly having low serum calcium levels and all the fun that brings (said with heavy sarcasm).

I am also tired of at the same time having high urine output calcium levels and all the worry and stress that comes with that.   Like waiting for the shoe to drop but the shoe is kidney stones and damage.   Just waiting…. never sure if it is coming, but knowing that you have to be prepared.   Like the unwanted visitor that says they are going to drop in but you aren’t sure if they really are coming and if so when they will arrive.   

The stress is real.

The worry is real.

My feelings are both real, valid, and in hypopara community probably more widely shared than people outside it realize.   Anytime you have a rare out of the box diagnosis, it is hard finding the care you need.   It’s not that the doctors don’t care, but they might not understand and just look at the numbers.   The numbers don’t always tell the story and often you feel like you are hypochondriac.   Often the doctors will make you feel that way too (insert any rare disorder)

Lastly….. I miss going to doctors and feeling like they know what they are supposed to know to treat me.   I never questioned that prior to 2016.   I’ve learned since then that if you are outside the box, they might think they might know more than you but chances are you’ve done your homework and they might not have.    Now don’t get me wrong, I know in the whole scheme of things they know more than me but when it comes to me and my diagnosis I’ve probably done more research than them.

I’m trying to find a doctor that I can go to and know they know what they know, but when you have a NORD (National Organization of Rare Disorders)  diagnosis that is often harder than it should be. I will further add that insurance is also a stomping block as is the cost of treatment, but those are a whole different post/issue.

So I’ve been struggling. I’ve been keeping it all in. I’ve been quiet in my communications, but I’m trying to climb out of my shell, be open and honest, and put it all out there. We all have our struggles. We all feel like we don’t want to burden others. We all feel like it is our burden to carry alone, but the truth is that when we share these burdens with those in our lives (don’t worry I’ve done that too)…… while it doesn’t make them go away, it does seem to lighten the load.

So if you are carrying a burden…… If you are struggling (with ANYTHING)……. If you feel like no one will understand…… If you feel like everyone has their own shit and you don’t want to add to it with your problems………. You might just find, that they want to know. That they are there for you and that being there for each other in the good and bad is what makes your tribe your tribe and if you don’t think you have a tribe reach out to someone and you might be surprised.

Complicated

Jan25

Complicated Relationships

I have lots of complicated relationships. To be honest, who doesn’t?

I love my blog, but I have not been great about blogging recently…… Complicated

I love to run, but haven’t been running much lately……. Complicated.

I want a clean house, but I hate to waste time cleaning it….. Complicated

I want to be a size 8 or honestly I would take 10 at this point, yet really don’t do what is necessary to make that happen…… Complicated.

I miss running with my friends, yet don’t seem to have the time to meet up with them as our schedules don’t mix….. Complicated.

I have a VERY complicated relationship with food.   To be honest, who doesn’t?

The problem I have is the all or nothing mentality and often we might be the ones complicating things more than they need to be.

As I previously mentioned, I’ve met with a nutrionist a few times now. She has given me some good feedback. We have talked about different food choices, adding more protein to diet and less carbs, and looking at better options overall. Things that most of us all know, but she has given some good tips. Overall it has been worth it.

Here is the complication though……. While I know everything she says is valid, I am beginning to wonder if I have the conviction to actually follow through. So far the answer to that will be a resounding no. I can’t even get myself to track my food choices for a day or two. Now maybe it’s because I know where I’m going off track and I don’t want a paper trail to remind me. Maybe it’s because I’m not determined enough to follow through. Maybe….. Maybe….. Maybe….

There are so many reasons we don’t reach where we think we want to go and I maybe to the point where I, honestly, am not sure I want to got there anymore.

I just had my physical in December. Cholesterol only went up 4 points and blood pressure is still really good. So while I have all the other stuff with my Hypopara going against me, relatively everything else is looking ok.

So now the questions I need to ask……

What do I really want and what am I willing to do for it?

Simple.

Yet, complicated….

Answers will be coming shortly and probably changing as time passes.

Too Much of a Good Thing

Oct2

I’ve met with the registered dietician on Friday. This was our second meet up after a consultation with her last month to see if we would be a good fit. She is a registered dietician and nutritionalist who also has a focus on endocrine and kidney disorders (Hello Hypoparathyroidism!). After our first meet and greet, we thought food tracking might be beneficial as it is hard to really make changes until you know what needs to be changed. Seems resonable!

So tracking I have tried to do. I even bought a year of myfitnesspal as a motivator. Now tracking is NOT hard because they really do make it easy. What is hard is telling yourself that you will track something later and then not doing so. Then the days where you know you are going to eat like a High School wrestler hoping to bulk up for his weight class. I have not been perfect but I have been fairly constent and as with everything in my life, I am trying to do better

Here is to trying to do better!

One thing that was very obvious is that I am not eating enough protein. Now for kidney issues, I am really supposed to avoid animal proteins which as a pescatarian I was already doing. That being said, plant based proteins are important especially when trying to create an exercise routine with good muscle recovery….

My bad.

Another thing that became VERY obvious is that I am eating way, way, way too many carbohydrates. Let me just say way one more time. Let’s admit it though. Carbs are tasty. Carbs are easy to grab on the go. Plus not all carbs are bad, but too many carbs is still too many carbs especially when not paired properly.

Case in point a random day in September where I tracked my whole day.

Not necessarily hitting my targets. Sometimes even when we think we are eating heatlhy, overal we are not getting all we need or too much of what we need. In talking with the dietician, it became apparant that there is too much of a good thing. Such as my morning smoothie. I was going with the add as much fruit as possible which is not really the way to go.

Sonal, dietician, asked me; “If you had to sit down to eat everything that you put in your smoothie for one meal, could you?”

The answer was a resounding no. The baker in me loves creating and I was using my smoothies for an outlet, but it really was too much. I am normally a too much kind of person. Lol. She suggested limiting the smoothie to 2 fruits taking into account the could I eat it all in one sitting mantra. Also making sure to add some protein to the smoothie in the form of a powder or food source (chia seeds, nut butters). Also adding some filling fiber such as oats, flax seeds and spinach. I can work with that! Kind of have been doing it, but in an over the top way.

Sometimes less is more of what we need and I’m trying to remember that.

While this morning smoothie was carb heavy, I also knew that it would be followed by a long bike ride and run. But it was also a good balance of protein and fiber. Balance.