Tag Archive | Hypopara

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!

Plugging Along

Mar26

Plugging along. That’s what I do…….. It’s really all any of us can do. Sometimes it is hard to keep going. Sometimes it’s easier. What really doesn’t matter is how fast, how slow, or even how hard you push. What matters is that you keep going.

I remember when I ran my first big race, one of my kids asked me if I was going to win. I told him not a chance and that I was just training to be able to finish the race. One thing that so many people get stuck on is what is the point if you can’t be the best of the best. The thing is they are missing the point. You don’t have to be the best of the best. You just need to be the best version of yourself. No one can do you better at being you than you.

So often in life we let what others think of our accomplishments diminish them. We compare ourselves and when we do that often we do not compare ourselves favorably. We ask ourselves the wrong questions – Why can’t I be as fast as xyz? Why can’t I run as far as xyz? It’s bad enough when we do this with our running, I won’t even get into when we do it in other aspects of our lives ….. But…….. But……But…. What if instead of asking how we compare to xyz, we ask

Am I being the best version of myself?

Am I doing what makes me happy?

Am I doing all that I can?

These and only these answers are in our control. These answers we can realistically and honestly answer. These are questions that if we don’t like the answers, we can evaluate and change so that eventually we get an answer that we want. We have no control over so many things in our lives, but we do have control over the way we react, what we do and how we live our lives

Case in point –

I was texting with a friend about my blog today. She made the comment, “I think it’s because it’s relatable. It’s not some picture perfect mom or athlete”.

When I started this blog it was to share my progress as I trained for my first (and supposed to be only) Sprint Triathlon. I shared what I learned as I learned it. I’ve never pretended to be more than I am….. I middle aged mom trying to do the best that I can. Sometimes my best isn’t what I want it to be, but it is what it is.

So here I am a few months into 2021 trying to be the best version of myself. Trying to find the sweat spot of running with Hypopara while being realistic. I have not been happy with my running. Not because I wasn’t running fast enough but because of the way I felt after and during. My new approach after my break has been much better both mentally and physically. I can realistically say that this month I will hit the 100 mile mark for running/walking with most of those miles being running miles. Even better, I have done these miles in a way that is best for my body.

Remember that we can only do what we can do and sometimes the best thing we can give ourselves is the gift of time to re-access, re-evaluate, and most of all just keep plugging along because eventually you get where you want to go.

Lucky # 7

Nov2

Tomorrow I will be stepping up the start line for my seventh marathon. Hopefully it will by the end of the day I can say that I have finished all 7. We all know that there isn’t much that is going to stop me from getting there. No matter what I wouldn’t trade it for anything.

With each marathon, I’ve learned something. Learned how to push myself. Learned that I am stronger than I realize. Learned that no matter what there is always a little more in the tank.

My first marathon, Philly, was a fluke. That year, I had trained and completed the Runner’s World Hat Trick (5k, 10k, and Half marathon all in two days). When it was over a friend nudged me to sign up for Philly the following month. One 20 mile training run later, I was in. I finished in 4:46:20. This is before I knew anything about running, so I do see humor in that I didn’t push for the 4:45 time..

Then over the next few years would run a marathon a year. For my second marathon, Marine Corps, I trained with a coach. I finished in 4:38:14. This is my current and more than likely my PR for marathon finish times. I should have PR’d my first New York as I was well trained for it, but went out way too fast not following the plan. This is a mistake I will not make tomorrow.

Two weeks after that first New York Marathon was my thyroid surgery leaving me not just without my thyroid, but also working parathyroid glands. I was determined not to let being Hypopara take away my running and the Chicago Marathon was supposed to be my one hypopara marathon and done. A way to snub my nose at it. I learned a lot in Chicago. I learned that for me the set run/walk plan doesn’t work for me. I learned that my body does NOT like running in the heat as it was very hot that year. Most of all, I learned that I can just keep going. All things being considered, an hour slower is pretty awesome.

But then, then it became about something more. Last year when I got picked to be part of the Sandy Hook Promise Team, I could not have been any more honored. I still remember sitting in a Toys R Us parking lot talking on the phone with a friend in 2013, a year after the shooting in Sandy Hook. She could not understand my pain over the horrific shooting when I was not personally involved, but I was involved. I’m a mother, that year my youngest son was also in Kindergarten. I took it very personally because this tragedy as we’ve learned over the years can happen anywhere. She couldn’t understand my pain and told me that I needed to do something as I wasn’t “getting over it.” I didn’t want to get over it, I wanted to do something. So here we are.

Although, even before last year I was involved. I did what I could, but I wanted to do more. This is my more. I can and do share the message of inclusion, stopping gun violence, and making a change. My personal friends know this to be true. I remember one year on Wear Orange for Gun Safety another friend that I ran into at a baseball game while I was wearing my orange shirt saying to me, “Isn’t every day Wear Orange day for you?” She meant this is the nicest way possible because she knows I am always spreading the message.

So here I am getting ready to run my second marathon as part of Team Sandy Hook Promise. At a lunch today it was said, “You weren’t just a number coming into Sandy Hook Promise. You were selected. Your stories and passion are what got you here……. We picked you from the heart.” So I run knowing that this isn’t about me. This is my way to not just share the Sandy Hook Promise message which I do, but about helping to support an organization that is doing so much good. Last year was my slowest marathon to date at 6:10:13; but my most memorable and favorite one.

I am honored. It is more than words. It is a truthful statement.

My goal. My only goal tomorrow is to wear my Sandy Hook Promise shirt with pride. Ok, I may also have a goal of 5:45 time but that is secondary. I know it won’t be easy, but nothing in life worthwhile is a walk in the park. I will get that walk in the park crossing the finish line. I’ve learned a lot about running since my first marathon. I’ve learned a lot about what my body can do even after becoming Hypopara. I will do what it takes knowing that I will have not just the support of family and friends, but the Sandy Hook Promise community.

This picture was taken last year during the marathon. I have taken MANY race day photos. I have NEVER taken one like this with the sun shining down on me. I look at this as a sign that I was not alone. So as I run these 26 miles, I know that the saying 26 miles for 26 angels is more than a catch phrase. It is real.

It’s go time.