Tag Archive | Hypopara

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:)

Control

Feb3

Sometimes your up.

Sometimes your down.

The trick is not to get stuck when your down. Easier said then done. 

Sometimes you get stuck through no fault of your own. Sometimes you can’t control what is happening.  Happening to those around you.  Happening to your body.  Happening in your life.

Get a health diagnosis…. Out of your control

Loose your job…… Out of your control

Things people do in your circle…… Out of your control

It is a fallacy to say that we control our own destiny.  Yes, I know there are those who would disagree. Yes, there are many things we control but the biggest thing is truly the way we react to all that life throws at you. The truth is sometimes we handle it well. Sometimes we don’t handle it at all and ignore and sometimes we just hold on and scream. Probably why life is often referred to as a roller coaster…. Or is that just me?

Anywho…. What does this have to do with my training?  Not sure, but I do feel that I’m in agood space controlling all that life has been sending my way.

Trying to find my balance with working full time while still working my home baking business and my household. 

Trying to find my balance with healthy eating and finding time for training without bringing myself to brink of exhaustion. 

So far so good. I have 6 weeks to the NYC Half. While I have not been following my training plan exactly, I have been following. I am getting the miles in.  I have been doing the cross training. I feel like this will be a good event. I have been going back and forth between following a walk/run plan to just going by feel. I know I will walk during the event. I just am still deciding if it will b part of the actual race day running plan or just a go with the flow thing. I have 6 weeks to figure it out. The most important thing is to get the miles in especially the long runs.

I am (so far) feeling confident in my training. Feeling like I am doing what I should be doing and that I will go into this event prepared to finish.

I am doing what is in my control and we will see how this all plays out:)

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?

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…

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.

Been a Minute

Jul9

So my last post about unmotivated seemed to start my summer theme, but…..

It’s been a minute and I thought I would re-introduce myself and my new motivation.

Hello there!

My name is Christine and I think I am a runner?

I think….

But I am also a home baker busy with my new Cottage Food Baking business. Baking, researching, practicing, plotting.

I also work part time outside the home at a child care center. If you have ever worked with 3 year olds, you know that it is exhausting in a fun kids are too cute way.

I am also a home maker. Although 1 of my boys is a college graduate this past June and now in the work force, I still have one more college student at home and a High School student.

I also have Hypoparathyroidism which makes everything a balancing act.

I love to garden.

I am a busy, busy, bee….

I am also a blogger? At least think I am. I’ve written many a blog posts in my mind never to have actually made it to WordPress. I hope to change that. I hope to change a lot of things. So with that let’s catch up!

Although I haven’t been blogging or training, I have actually been moving (somewhat). I’ve been pretraining training. For what you ask.

I am running the NYC Virtual Marathon for Sandy Hook Promise. Those of you here a while know that I had made it to the in person marathon team for the 3rd time, but this year gave my spot up for a few reasons. I was at peace with that. Then Uvalde and I wanted back in. So I am now ”running” and raising money for Sandy Hook Promise as part of a virtual marathon team. Even though it will still be 26.2 miles, the pressure is off.

You can support my fundraising efforts here – https://fundraisers.hakuapp.com/christine-chaillet-1?fbclid=IwAR02hdj0avNFAMl3Ygl6bfu77vtYo03Sr0bSttsji_YwetlCUFZMB5BUMVc

Now before entering to do the virtual marathon, I had already signed up to do a Sprint Triathlon. This is one that I have never done, but have wanted to do. Sprint Triathlons have a special place in my heart as my very first race was a Sprint Triathlon – The NJ Iron Girl.

This was the race that started my crazy journey. That I started blogging to share my progress. That motivated me to run and made me realize that I actually like running. That got me where I am today because I cross trained and liked it which is the main reason I liked the idea of jumping back into a tri. Although I do not enjoy the swim as much as others. The swim will be in the bay at LBI. It also requires training. I always say with a tri…. The bike, you can coast. The run, you can walk, but the swim….. you will drown. Not really because they always have safety measures, but you get it.

So I have been pre training. I’ve been doing some biking. Still running sporadically, but really no swimming except some laps at the summer pool. This will all change next week…….

Because my training plan will officially start and I will be off the couch and out the door!

The Load is Heavy

Mar28

This post is for my Hypopara friends……

For those of us who have been waiting and waiting and waiting….. and yet again waiting for them to resolve the Natpara issue, this last week was a kick in the gut.

For those of you who have never heard of Natapara, I will give you a very brief unscientific explanation. For those of us who live with Hyopara (Hyparathyroidism), it a nutshell it means our parathyroid glands do not work or work properly. Never heard of a parathyroid? Well that’s because it is one of those things that the body usually never has a problem with. Most (not all) of us came to the Hypopara world due to a problem with thyroid surgery where the parathyroid glands (there are 4) were damaged. At least that’s how I got here. Your parathyroid glands produce a hormone that is responsible for helping your body regulate calcium levels. Not a big deal you think, until you look at this chart.

Anywho……

For a brief moment, all of this was secondary because I got to be on Natpara, a daily injection of the synthetic parathyroid hormone. I was on it for a blip before it got recalled. My body worked the way it was supposed to work without a barrage of pills, self checks and symptoms. I also no longer worried about my kidneys since all levels than were in normal range. Then for reasons that really don’t make sense, this option was taken away. When I say doesn’t make sense it is because it is still available in others parts of the world, just not in the US. So back to daily routine.

Whatever……

As the saying though goes though….. Just because I carry it well does not mean the load is not heavy. It is heavy. Sometimes you get so used to carrying the heavy load that you forget it is there, but it is always there. You stop really speaking about it because you just do what you need to do and even those in your circle don’t see the struggles. Always lurking. Waiting to remind you that it is there. It is those moments that are frustrating. I also know that I am lucky because even with my Hypoparthyrioidism I am able to accomplish and do so much.

But for now, I know that many in the Hypopara community have no choice but to keep carrying our heavy load because we all got notified that Natpara is not coming back. It makes no sense to know that there is something out there that will take away the symptoms, help to protect kidneys because we were no longer taking high doses of calcitrol and calcium, where your face doesn’t start to tingle telling you that your calcium is dropping (that’s what mine does but everyone is different), your feet uncontrollable cramp up, or have muscle spasms in legs. Just sitting here waiting for the other shoe to drop as you deal with the life of hypopara……… because in the end

What choice do we have

especially when the only viable one was taken from us.

This Is Different

Nov28

So after NYCM, I said that I didn’t want to run anymore marathons. I meant it. I meant it for several reasons. One, honestly, is that I was getting bored of running. I vividly remember going for a training run one day. I was running fine. I wasn’t tired. I was running/walking fine but I was bored. Now part of it is because I mostly train on my own, but I seriously just was tired of running. Not tired from running, but of running.

I don’t even know if I have run since the marathon which better change as I did sign up for the Fred Lebow half marathon in January.

I will also admit that I have been thinking about triathlons again. My very first race that I ever did before getting off the couch that got me to where I am now was a Sprint Triathlon. It was a big motivator. It also great at making me cross train because it wasn’t really cross training but training. I had one thought that kept me motivated to train especially the swim….

With the Run, you can walk

With the bike, you can coast

With the swim, you will drown….

So train.

Prepare

I am excited about this. This is truly going back to square one.

No coasting.

Train some more.

Most of all, I am feeling a sense of excitement as this will be all new again. I haven’t done a Triathlon since 2016 and never with Hypopara. I may be 100% wrong, but for some reason I think this will be less stress on my body. I also think that with transitions it might be easier to decide when and where to add calcium during training.

Now while this may really feel like it has come out of left field, it has not. I have been mulling over the thought of a triathlon for a while. It’s been in the back of my mind festering. And like all things that fester, eventually you have to do something.

So here I am. Signed up and trying to drag as many of my friends down the crazy train with me…….. This is something all good friends do!