Tag Archive | hypopara athlete

Done is Done is Done

Mar17

It’s over with!

I did it!

Going into this training cycle, I had thought I would train for 2:45 and on good day maybe faster. As we know, training was not what it should have been but still was enough.

So I am happy that without following the plan, i still managed a 2:50 half.

Was it the race I dreamed of running? Nope.

Was it still a great day? Yup

So here’s the run down…..

Early morning meet up for a Van go to the start. Like, early, early. Van meetup was 5:15 AM. Ugh.

So up at 4ish and off we went.

Then wait, wait, wait…. And try to stay warm.

The weather was cold and a little windy, but it could have been worse. I know that I run hot, so even with the cold I layered. Shorts with long socks, short sleeved shirt with running sleeves and a running vest. It was just right for running.

I did bag drop off knowing that it would be good to have warm clothes at the end and glad I did because it was cold.

As normal for me, I went out too fast. I really didn’t have a plan, but figured that I should keep my pace around 12. Few miles in the beginning couldn’t help myself.

I did not train at 11 minute paces. I did not train.

Then around mile 9 ish, my arms started to feel heavy. I was getting worried and while I hadn’t been adding calcium during training runs, I felt that I needed to add some. I have learned it is better to be overly cautious than to wait for harsher symptoms or a crash. And you can see mile 10 is what it was, but I did bounce back.

It was a good day, a great race and there’s more to come in this story. But this is enough for tonight.

Ready or Not, Here I Come!

Mar14

Tomorrow is the day!

After months of “training” tomorrow is the day. Weather seems like it will be on track for a good day. It will be cool, but I would rather run in the cold than bake in the heat.

Logistics are in place. Van to the drop off location is set to leave at 5:15 AM. Downside of NYC races is the very early start of the day especially when you are in last wave. It is what it is though.

Outfit all picked out. This time of year, it is always back and forth in what to pack…..

Will I be too cold?

Will I be too hot?

I’ve decided I would rather be too cold once I start running especially since I usually run hot. Checking a bag, so not so worried about needing to be overly warm. I will bring sweatshirt and sweatpants to put on after.

Once thing I always do for some reason is look up my bib number as an angel number. Sometimes it means nothing. Sometimes it’s ho hum. Then sometimes it is like this….

I’ll take it. Fingers crossed…

What is different about planning for this race is there is no planning when to take my meds. While bringing extra calcium for just in case, this is just on the side of caution. I haven’t added extra calcium/calcitriol in months. It’s nice not to have to think about.

Let you know how it goes……

Last Study Visit

Mar10

This post is for my Hypopara peeps, although anyone can read:)

This year in November marks the 10 year anniversary of me becoming Hypopara. It’s been a wild ride with many ups and downs. For now though, it seems like the ride has come to a stop. Thanks to to Yorvipath.

I was lucky within the first year or so to realize that I needed an Endocrinologist that understood this rare, somewhat complicated and often misunderstood disorder. So I searched out an Endocrinologist with knowledge

With that I found, Dr Rubin.

She is a ROCKSTAR in the Hypopara community. The real deal. She is considered (because she is) a leading expert in hypoparathyroidism. On top of being caring and knowledgeable, she is medical advisor to the HypoPARAthyroidism Association and other groups. Since she is a leader in the field, she has partnered on studies of Hypopara. I was lucky enough to also join one of the studies.

I began this study to monitor the effects of Hypopara. It began with series of scans, bone density, cognitive and physical tests, and lab work. then periodically would go in for updates. Then ended with a final day of the original scans, tests, and lab works to compare.

I was told that there were 100 people in study and then control group. Several did drop out and I was the 5th patient to complete the study. Then they get the fun job of analyzing data.

What I noticed personally from this as the study progressed……. There has been a huge improvement with Yorvipath. This fairly new drug may require more studies for long term, but I would in heart beat raise my hand for another study.

I will say the study was a commitment in both time to go in and cost to get into city, but it was well worth it. Yes, it was beneficial to me; but I hope the data helps them determine treatments and care plans since during the study I was on various treatments as available. Although I am not privy to how they are analyzing:). I have no doubt though Dr Rubin will use this to make the live of Hypopara patients better:)

I realized today too as I was filling out one of the long questionnaires that I no longer really experience symptoms. I no longer worry about crashes, experience many of the symptoms associated with it.

For those who are not hypopara wondering what a crash is…..

This is a crash!

No more though. I told Dr Rubin that I take no supplements, calcitriol, or an other items to control my levels. That being said, I will forever run with extra calcium just in case.

Anywho….. I am so happy to have participated and I am very lucky to have been diagnosed with this when there are so many new helpful treatments now available!

Now question for you

Would you participate in a study if available to you?

The No Training Plan Training Plan

Feb15

4 weeks to go.

Bib pick-up is secured. Van to start is set up. Talking with friend on how we will take the train home. all is set.

Training has been what it has been. The weather in NJ has not been cooperating for running outside. My garage treadmill has been unreachable due to car in garage. Even the gym has been to packed and treadmills are not always available.

This doesn’t mean that I’ve been doing nothing. It just means that I’ve been doing my own thing. I have a training plan loaded in Training Peaks.

Have I been following it?

Nope.

I’ve been looking at it more as a guide and then doing my own thing.

Today, I wanted to run a real run. I had thought about going outside, but there is still so much snow and ice. The roads and sidewalks are really not that clear. So while warm enough to run outside, I took myself to the gym.

At the gym, I ran into a badass running friend. We got to talking about what we are training for right now. I told her how I had the NYC Half in a month, but wasn’t really following a plan but loosely training. She said she was just talking to another person about the No Training Plan Training Plan.

It hit me…. That’s it.

I know the reason too as I said it to her. Running a half doesn’t scare me anymore. Yes, I need to train and run to finish. That being said; I know that even on days where it will be hard, I pretty much know I will get to the finish line.

Now I’m not saying this to sound like I can show up and finish well or have a pretty race. I just know that for the most part, I will finish. Especially when finish time is no the goal.

I had thought going into this training that I would want to do around 2:45 for this half. I no longer think that is where I will be. Who knows though because I still have a month of training.

Today’s training run was to run 60 minutes straight. No stopping. No walking. Just run and see what happened.

So I did.

We shall see……

I will say though that I am signed up for a July event that will scare me enough to train. It’s only a 10K, but it is a Spartan 10K that I am doing with 2 of my boys and others. That will require a different training. As will a September Sprint triathlon.

For now though, I need to run NY.

Looking Ahead

Nov28

I had been thinking about challenges/goals for the coming year. I wasn’t sure what it would be.

The goal came to me.

I had forgotten that I put in for the NYC Half lottery. I was reminded, when I got the email.

I wasn’t sure how happy I was because logistically NYC events are a bit of a pain. Worth it, but still a pain. The exciting part is that 2 of my running friends also got in. So misery loves company.

I’ve been thinking about goals for event now too. I’m thinking if I could finish the Bethlehem Running Festival in 2:41:08 after running 3 other races that weekend, I would train for a possible 2:30 half. We shall see. We shall see.

Then after wrapping my head around that, two of my suns have roped me into a 6K Spartan race. Fortunately that won’t be till summer. So one goal at a time.

One day at a time.

One goal at a time.

One run at a time.

3 Weeks to Go!

Sep28

It seems like training lasts forever and then before you know it the race is around the corner!

Training has been going well.   While I have not been sticking to my trianing plan 100%, I feel confident in my training.    I’ve been for the most part hitting all the long runs or the multple day runs.

As a reminder, I am training for the Bethlehem Running Festival which consists of 3 days, 4 events totalling 26.2 miles.   I’ve done this event a few times and am excited to do it again.   I wasn’t planning to do this but got talked into it by my son and his girfriend to do it with them.   How could I say no?!

Todays run was 11 miles.   It was hot today.   I’ve been having some very minor low calcium symptoms . 

Dancing muscles as I call them.   Technical term is muscle spams.

I’ve had a few other very minor symptoms.   I had blood work done Thursday and my levels were just at the low level.  My  doctor plans to up my Yorvipath dosage, but since it’s a daily injection I need to wait for new pen.   The pen has 3 different dose levels and my current one is already the max for the pen   

So in order to make sure that I didn’t have any issues, I put some powdered calcium in an extra water bottle that I took on the run.   My thought was to just see if I needed it.   Well since it was in the mid 80’s, I needed it.   I didn’t wait till I felt like I needed it, I drank it preemptively which I’m glad I did.   When I got home I did show minor symptoms but nothing to worry about.

The run was hard.   I took it easy and tried to be consistent.   The heat made the run not as enjoyable as it has been but you can’t pick your wheather.   I feel like I am ready for this event, but we shall see.

After stretching, I made a protein calcium packed smoothie.

I am starting to form ideas of how I want to run this event. More on that this week. As its tine for some rest

Jul31

2016 was the year I began tryin to take my running to the next level. I was working with a running coach. I had goals. There was no stoping me….. or so I thought.

Then, as I’ve said before, two weeks after running NYC Marathon which I crashed and burned because I went out WAY too fast I had my thyroid out. As you know this was the surgery that left me with Hypoparathyroidism.

I’ve started thinking about new goals now that I am on the Yorvipath hormone replacement therapy. It has gotten me looking at where I’ve been with my running and what I might now be able to do now that my body seems to be working again.

The following year, I wanted to push myself to run another marathon. It was hard. It was hot. I did it. I finished in 5:48:52. My marathon times only got slower from there. I usually finished shortly after 6 hours. My slowest being in 2023 at 7:14.

It was always a struggle. I had to balance the need to replenish my calcium supplies for running while taking into account my kidneys. Then there was also the issue of making sure not to allow calcium to get to low causing a crash.

I pushed myself.

Now that I am taking my Yorvipath, it appears that my body is able to once again do what is asked. Suddenly I can push to hit 12 minute paces. I still. Have much to go, but it is a start. My Garmin even recorded a best pace of 9:24. No, I can’t sustain that but the fact that I hit it is a start.

So as I get ready to train for Bethlehem festival, it is time for new goals…..

Jul26

I’ve been talking a lot about my pre-training for my October Bethlehem Running Festival races. Pre-training will officially turn into training this week.

What does the week look like now that it’s go time.

4 mile run

5 mile run

4 mile run

7 mile long run

Am I ready for this level of training? I guess we will find out. Here is what I do know……

I am down now over 15 pounds thanks to following WeightWatchers!

I am 100% off all supplements and currently my Yorvipath dosage is keeping my calcium stable. I’ve gone for several runs in the heat, with fast paces, and even shortly before my injection was due without issues. Fingers crossed this keeps up.

I will say that I feel once again like me. I will also say that after Natpara getting pulled once I got used tot his feeling that part of me worries that something similar will happen. Although I don’t think this will get pulled, I think my concern is more about insurance suddenly not approving it. It is nice not to constantly deal with effects of low calcium and have a stable level at 9.6!!!

With that being said, I do feel like I am at a good place to begin this training plan. There are no excuses. If I follow the plan it is on me. If I don’t it is on me as well. As long as my Yorvipath continues to work, I need to do my part.

So here is to beginning training….

Pre Training and Testing Limits

Jul13

Ok, first the short Yorvipath update.

Currently, I am totally off Calcitriol and only taking one dose of calcium. Last bloodwork was taken when I was taking two doses of calcium. Corrected calcium level of of 9.7. I have yet to get bloodwork with the one dose.

This weekend I went out for two runs.

Saturday

It was HOT. It was humid. I got out early, but really didn’t matter. I am in pretraining for the Bethlehem Running Festival, so I am just testing things out. I also am testing how I feel with Yorvipath. This will give me ideas for training and goals.

Got out the door and about half mile in I realized that I didn’t take my morning calcium since I left earlier than I normally take it. Figured this would bee a good test and I wasn’t worried because I had my extra calcium. So I just kept going. I will say around mile 2 I felt a little tingle in my upper arms. Could have been just due to the heat, but I took my calcium just to avoid any issues especially since I don’t know levels.

Not too bad:)

Today, I intentionally went out not taking my morning calcium as a test. Don’t worry, I was again packing my morning dose. It was still warm but not as hot as day before. July humidity that’s for sure. My today was just to run a decent pace and run the whole thing without walking. While I did again stop to take calcium around 2 miles, I did pretty much run the whole way. I’m not sure if I necessarily needed calcium physically as much as mentally I needed it. Better safe than sorry.

Today was a beautiful run with negative splits, pushing myself but still feeling I could push more.

I am still not sure if the heart rate was right today as that seems low. My resting heart rate is normally in 70’s an I’ve had to watch heart rate from going too high previously. So something to watch. Other than that I really couldn’t have asked for better run.

Let’s see where we go from here.

New Beginnings.

Jul6

Sorry that I didn’t update sooner. My keyboard died and I needed to get a new one:)

First world problems. I know.

Anyway 2 weeks on Yorvipath. I’ve gone for blood work twice. They have both been good. Corrected calcium levels were in the mid 9’s. For those not versed in calcium levels, anything under 8.5 is low. But I have to say it is more than just calcium numbers. I feel like my body is working again. Probably because Yorvipath is actually replacing the hormone my body is missing.

I am still in the beginning stage. I am adjusting dosages while lowering daily pill intact. Exciting stuff is that I am no longer taking any calcitrol and still in the 9’s!!!!! I am lowering my dosage of calcium supplements. The goal is to stop them too. I am down to 2 doses a day. More blood work to follow. More adjustments to follow, but it is already worth it.

Right now the biggest side effect I have is bruising from blood work and redness around injection sites. You inject in either belly or thighs and rotate sites. I have also had some leg pain, but not sure if that is from just all I’ve been recently doing. Monitoring.

So now……

WHAT HAVE I BEEN DOING?

Well the first week, I admit, I took it very easy. I did not work out. I also had a busy week with school, so I didn’t have a lot of extra time anyway. Then after a week an half, I started at it.

One night I wanted to just run. So I did!

I felt winded. I felt like I pushed myself, but what I didn’t feel was the Hypopara symptoms.

Then I went for a 4 mile walk/run with a friend. I followed that with going and getting ten forty bags of mulch and doing some gardening. IN THE HEAT! I hydrated. I took breaks. I did all the things anyone would do and I felt like I could do it!

Then the next day I went for a three mile run on my own. I tested out a running vest. I ran pretty much the whole thing except for walking to drink as still figuring out the vest thing. No symptoms.

Then I did some more gardening and mulching.

Then the next morning I did more.

All the while not feeling ANY symptoms of low calcium.

So here is to new beginning!