Tag Archive | hypopara athlete

Sometimes I Forget

Sep1

When you are a healthy runner, you can still run into issues with your training. You can over train. You can become dehydrated. You do so many things wrong, but usually there is some wiggle room. When you have Hypopara (or any other health issue), you might not have so much wiggle room. Sometimes you forget that too.

Today was a day to remind me of that. A day where I got the not so gentle reminder that there isn’t as much wiggle room as I would like to pretend. It is easy to forget these things. It is easy to pretend that you just take extra calcium and meds just because. Especially when for the most part you are stable. Yes, you sometimes get gentle reminders that you need to take some more meds….. a “dancing” of your leg muscles, a little tingle here or there, but nothing crazy.

Training has been going well. I haven’t necessarily been following the plan perfectly, but enough that I feel comfortable with it. Enough to know that I can run a half in 3 weeks and continue with it to run the Hat Trick in October. I’ve done multiple back to back runs. Some of them have even been a run in the evening followed by run the next morning. All Good.

Yesterday I went for a training run with my friend. We did an easy 6 miles. No issues. Run itself was comfortable and left feeling like I could run more. We did it!

This morning I left for another 5 miles. I was adding some hills, since the Hat Trick has lots of them. I wasn’t going to race. I wasn’t going to be fast. My goal was to try to be steady. Figure out a walk/run plan. I was about half mile out when I realized that I forgot my water. It was hot and humid, but I figured lets just keep going. So I did…..

Like all runners, I monitored the way my body was feeling during the run. Today I was really just focused on completing the miles, watching pace to make sure I wasn’t running too fast, and trying a new walk/run plan (8 to 1). I was trying to run a smart training run.

During the run there were times I felt the tingles that sometimes come when running. I adjusted. I just wanted to push to 5 miles watching my heart rate and pace. I’ve felt these tingles before. These are just little warning bells, but nothing crazy. Once I hit the 5 miles, I walked.

I had 1/2 mile to go and figured a walk would be a good cool down. The tingles became more intense, but again nothing crazy. As soon as I got in the house I made my ice water with electrolyte powder. While sometimes after a hard workout I will take some extra calcium, thankfully today I also took an extra Calcitriol. Minutes later both my hands seized up with tetney or as I call it, the claw hand. I could not open. I could not close. I also having severe tingling and pressure in both arms and lips/face.

I admit it, I got very nervous especially because I was home alone and would be for hours. I wasn’t sure if I was going to pass out. I asked Siri to call the friend I ran with yesterday. She is familiar with my issues and as a bonus she is a PT who understands the body. I tied to be calm, but I think she knew I was freaked out and how I was feeling as I was swearing up a storm. I even gave her my address and unlocked the back door just in case I stopped talking to her. This was no joke. This was the worst crash I’ve ever had…. NO I AM NOT BEING DRAMATIC. Those who have been here understand.

Luckily as we stayed on the phone with my friend little by little my hands became my own. I would happily tell her, “my pinky and tall finger are moving!” It slowly released me after quickly grabbing on. She said she knew when I was feeling better when I stopped swearing.

Once my body was my own again, I texted my doctor. She called minutes after getting my text. I love her so:). We talked about what happened. What I needed to do as far as meds. She felt that we would rather go on side of dealing with high calcium than low…. Although the high never came. She gave me instructions on what to do if the tetney came back…. It was go to ER for possible calcium infusion. Thankfully that never came either.

I am ok now. I literally did nothing for the rest of the day. Resting. Eating calcium rich foods as well as following the regime she gave me for meds.

So today was a reminder. Be smarter. Be prepared. Most of all know that even if one day something works, that Hypopara does what it wants when it wants. That being said, I know hope is on the horizon. Hopefully in 6 months to a year I can be on the hormone replacement. Until then, I am thankful this is (for me) a very rare moment.

Stay safe.

Stay healthy

Most of all…

Never give up.

Hitting 5 miles.

Empty Cup

Aug7

I am following a training plan to run on tired legs. Here’s the thing though…… My legs are always tired, sore and feel like I need to stretch which is why for Christmas I got a leg massager.

Sometimes you feel like your cup is filled.

Sometimes you feel like your cup is half filled.

And sometimes…..

Sometimes you feel like not only is your cup empty, but maybe it has a crack in it and is broken.

Today I had 5 miles on my training plan. I had every intention of running. The weather while rainy had cooled significantly. I was looking forward to it. Then I hit the wall.

As a runner, most of us know that feeling of hitting a wall. Usually this is on mile 20 of a marathon. I’ve done that and it’s not pretty. Sometimes though with Hypopara, you don’t need to be running a marathon to hit the wall.

Today was one of those day. I woke up, went to work as a preschool teacher, and come home with intention of running. I still had some things I needed to do at home and did them. I forgot to take my afternoon calcium which I normally take when I get home. Apparently that was enough to hit the wall.

What does my wall feel like….. It is intense fatigue. I have said to my family that it is not that I want to take a nap, but I NEED to take a nap. Like I can’t go another step. Luckily I don’t hit this as much as I used to, but when I do there is no ignoring it.

So I curled up on the couch and took a short nap. It was enough to get me going. Not to run, but to get other things done that needed to be done

So pushing a run back a day is better than trying to push through on a day like today.

If you know, you know:)

Tomorrow is another day.

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.

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:)

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!!!

Pulled this one Out of Nowhere

Mar20

So today, I ran the NYC Half. You wouldn’t know about that because I’ve been a little absentee with both updating my blog and my training. My goal is to try and do better with both.

As far as training goes, I followed no plan. I didn’t run nearly as much as I should have especially if I had followed a plan which fell through the cracks. In February, I did mostly 3 mile runs and this month, mostly 2. Then I did one 8 mile run and one 10. I would like to say that I was offsetting that non running with cross training, but that would be a lie. So the race was going to be what the race was going to be.

Got to say, for lack of training, not having a plan, and just overall preparation; I really pulled this out of nowhere.

100% I should not have had the race I had today, but I had a great race. So I will take it. I won’t knock it. I won’t question it with the exception of questioning what I might be able to accomplish if I actually trained:) My goal today was to run a smart race and I feel that I did.

For my Hypopara friends, running a smart race meant making sure that I paid attention and added my calcium BEFORE I would need it which I knew from last years marathon training. I also adjusted my doses today. Normally I take .25 Calcitriol in morning with my pills. This morning I took .50 with my normal calcium amount. Then on the course around mile 5.5, I added 1,000 mg of calcium and 25 mcg of Vitamin D. It add them to my water, so it forces me to continue to hydrate. Post race, I took another of my normal dose of Calcitriol and calcium. Overall, this made for a good day. I am lucky that I had last years marathon training to fall back on to know what I would need when. So I don’t necessarily recommend doing this without training for this reason alone.

As far everything else goes, I feel like everything fell into place. The weather was perfect. Picture perfect. Great day to run. Blue skies. Slight breezes. Sunny and in the low 60’s. I could have done with 5 degree lower but that would just be greedy to ask for that. Therefore, I will go with picture perfect.

My goal was to run a smart pace which meant watching the pace and keeping it in check. I walked when I wanted which most definitely was the bridges and maybe a little more than I should have, but again I was watching average pace as well as running pace. I knew from my whopping two long runs, that if I kept the pace in check I would feel good and would be able to get to the finish feeling comfortable. So that’s what I did. Once I got to mile 11, I pushed a little harder which made me need to walk but by mile 12 I knew I was pushing when I got a stitch in my side. Well it’s not a race if you don’t push:) My average pace according to my Garmin was 12:34 which really is the sweet spot for me right now. That being said I did push enough that my best pace was 8:36. So there’s that:) Overall my I was running in zone 4 for most of the race which is just where I should be. I was at Zone 5 for the finish which is also where I should be for the finish.

Today was a great day for running. It makes me want to be better training for the Queens 10K to see what I can do and how far I can push (smartly…. always smartly)

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!