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Listening to My Body

May18

Yesterday was race day.

When I started training for the Brooklyn Half, I thought realistically that a 2:45 was not out of range with enough training. My last two prior half marathons have been just under 3 hours. So it was not unreasonable to think with push and training, it could happen. It was a reasonable A goal.

As you know, training had been going well right up until I hit a few speed bumps with my calcium. I missed some runs due to not feeling up to it and then there was the whole fiasco of the calcium crash.

In speaking to my doctor, she was advising on the side of caution. She thought it would be prudent not to run. In talking though, she said if I didn’t push and did a lot of walking that would be for the best.

That was the plan…..

So how did it go……. Here’s the recap

I prepared the night before. Carefully not only laying out my clothes, but also getting all calcium/meds ready to go. Taking extra just in case. I decided to go back to adding powdered calcium to my water. Thinking that I would take plain water at water stops which worked well. On top of that, I took a dose of my calcitriol/calcium at 4:00 am before leaving for city. I also upped my normal calcitirol dose at this time.

The morning of the race started off with alarm not going off leaving me 20 minutes to get ready which is why it is good to have everything ready to go. Nothing was forgotten.

Get into the city to find that the parking that NYRR said was available was not in deed available. That provided some added stress as we were parking at the finish line near Coney Island and then needed to take train to Prospect Park for the Start. We were lucky to find a small lot that actually was very reasonable at $20. Dawn was right when she said, “they could have charged double and we would gladly have paid.”

Then off to the trains to go to Prospect start. Get to the Corral for our 8:20 start time. Before the race started, I took my normal dose of calcium/calcitriol. Then go to start my watch and realize that for some reason my Garmin did NOT charge!!!!!!!

Now I wasn’t running for time. I was planning to listen to my doctor, but I’m still a runner and like my tracking. I also thought it would be good to keep me in check as I do tend to start off too fast in big races. I also run faster than I can maintain or should be, but it was what it was.

I was running all on feel.

It was strange not to have a watch to watch. Although out of habit, I looked at the blank screen several times during the race. I took off at what I felt was a comfortable pace. I was feeling good. Then at the 5k water stop, I saw the 2:45 pace group and realized thats not where I should be.

I had to remind myself that my goal this race what not so much a time, but to keep my levels in the zone. I also realized that the conditions were very similar to the day I had the big crash. It was HOT. It was HUMID. The heat is not my friend. I was sweating.

With exercise everyone burns through calcium, but their bodies usually replenish by taking from bones. No worries though because this is a normal process and is actually good for bone health. For those of us with Hypoparathyroidism, this does not happen. There is no calcium regulation. So as our body burns up the calcium through sweat and heavy exercise, it must be manual added with our supplements and meds. Downside is that we just have to make educated guesses when to add.

Yesterday I hit it right – with the added meds and I do think the added calcium in the water. My doctor said it takes about 20 minutes for the meds to hit which is why it is important to add before feeling low. So thats what I did.

So I ran by feel. I walked a lot. I reminded myself that I did a lot of walking in training. When I walked, I power walked. When I ran, I ran by feel.

As you can see I did start off too fast. I adjusted. There were times that I thought I could/should run and push myself. I reminded myself that I needed to finish a smart race. A race that was more about being smart. I had no idea what time I was going to finish, but honestly this was my B goal.

It was a good day. A day to prove that I can do hard things.

Running Smart

May14

I’ve run smart races.

I’ve run races not smart.

It is much better to run them smart.

After seeing my Hypopara Endocrinologist, we talked about how I’ve been been more syptomatic with low calcium symptoms. Yes, there was the crash after my last 10 mile run, but there I’ve also been having “normal” low calcium symptoms on a regular basis. Things like muscle cramps, tingles, and muscle spasms.

These are just things you get used to.

Here’s the thing….. You forget that these are not normal. They are just your normal.

In talking with my doctor, we don’t see any reason for the changes. My only thought is that I may have been under stress but even then.

I’ve run more marathon’s with Hypopara than with out at this point. Even with all my marathon training and Hat Trick training, my calcium has not been this bad. The only thought I’ve had is that I did used to run with powdered calcium in my water. Although I haven’t done that in years.

I’m going to try again. While it really is never a good thing to try something new on race day, I will be adding powdered calcium to my water. I will still have my regular doses with me, but I’ve got to figure out dosing.

Again, there is no way to measure calcium levels in real time. My doctor did say that it is better to go too hight than too low.

We also talked about my last crash and while she said it was smart to go home to where my meds were to make sure to take care because if it continued to go lower instead of regulating that it could cause a cardiac event…. And that based on my account and documented photos, it was a “severe crash.”

Now being she is the medical profession, she did caution about running Brooklyn. That being said, she also said as long as I did it smartly it should be ok since I’ve completed two other 10 miles runs in training. I also said, that I would be smart and if I end up having to walk a bunch, I will.

I will get to the start.

I will get to the finish.

I will be smart.

I will probably be very slow.

I do not anticipate that I will meet any A goal that I once floated at the start of my training.

The upside…… I am still moving.

Plus I have the hope of now getting on the therapy replacement plan and then it will be game on.

It Will Be What it will Be

May4

Yesterday I met up with a running buddy for our last 10 miler before Brooklyn. Two weeks to go. Training has been going ok, but as I’ve mentioned I’ve been having some low calcium issues. Nothing to write home about, but I know I’ve been low. When you know you know.

So Dawn and I set off. We had no plan or pace, but we kept each other in check…. Kept from running too fast, too slow or too much walking. We met at a park and got looped back around mile 6. I have been adding calcium/cacitriol at this point. I could tell that it was time as I was getting a few finger tingles, but nothing too bad. Took my pills and refilled water and off we went.

I started lopping back to the park only for Dawn to question. I had gotten confused and then was sad to realize that we had more miles because we would have gotten bak at 8 not 10. Oops…. My bad.

We change it up and get back to the park at 9.75 and we get it to 10 in the park. All is good although I’m happy to be done, but nothing too bad.

We take the required picture:)

Then we head off to our cars to get water and at this point I’m thinking I want to take some more calcium. I had been feeling tingles in hands during end of run and now was feeling it in my upper arms.

As we are talking, I get my pills. I start with 1 calcium. I immediately rethink and decide to take 1 more and some more calcitiol which I might not have needed but I was pretty sure a crash was coming.

I was right.

Apparently I said to Dawn, “It’s coming.”

She thought, “What’s coming?”

Then she saw.

Both hands and arms were full on tetany. I thought best option would be to get home. I asked Dawn to drive me as we were only a few minutes away and thought maybe just to add some more calcium. Plus I would be home:)

While she may not have been calm on the inside, she remained cool, calm and collected. As we got to my house, I used voice command to call hubby who came out to get me. When I got inside, I sat took some more calcium and slowly…. Slowly……. My body released.

I texted with doctor…. Continued to add some extra calcium for remaining of the day and all is well.

In retrospect…..

It was much warmer than I realized. I even got some color from the sun. Heat is not my friend.

I had been dealing with low calcium symptoms during the week and probably started in a deficient.

Again – it was hotter than I realized

Those without Hypopara (my friends and spouse included) might have been shocked by what happened. I was not. Although it was worse than the last crash.

It is what it is.

Funny not funny during the run, Dawn and I spoke of my last crash. I had said to her that wouldn’t it be nice to have a monitoring device that could tell you when your levels were off like a diabetic.

Yup…. Wouldn’t it be nice

We also talked about making sure that I could easily get to my pills without having to worry about opening something.

Anyway this did put things in perspective. Yes, I will rethink race day. I will take into account weather. I will make sure to have levels in check prior to race day. I will make sure to put info on back of race bib and will make sure to know where medical tents are.

Most of all, I will not let this stop me. I will just make sure to be smart.

Perfect timing, I already had an appointment for a Hypopara study that I am participating in. I am doing my 24 hour urine collection today followed by some testing tomorrow. I will also get to see my Dr who I will discuss what I need to do.

Even When It’s Hard

Apr29

Last week I’ve been dealing with low calcium symptoms. Nothing major, but knowing that I needed to dial it back a bit.

I skipped a couple workouts. I just couldn’t seem to get to where I should push it. Cramping, muscle spasms and such. Didn’t help that I also forgot my pills at work one day . I was a hot mess.

Muscle spams

Nothing major, but it went on for a bit. Here is the thing, you have to listen to your body. My body was saying slow it down. Besides this close to the haf, it wan’t going to make or break me.

Sunday I went out for my long run. I procrastinated and procrastinated until it was time to go…. I just wasn’t feeling it, but thought it was just that pre run don’t want to go.

So off I went.

Around mile 5 I took a 250 mg calcium. Usually on long runs I do this around mile 6. By mile 6 I decided to take another 250 and my calcitriol as I was feeling tingly fingers. I knew at this point I could no longer push it running, but I really wanted to get the miles in.

So I got them in,

Done in is done and that is all that mattered. I am glad that I got it done and glad I didn’t push it. By time I got home I needed to add some more calcium.

I was toast…. But as someone said

10 miles is 10 miles.

Made sure to rest, recover and take my calcium

Two days later, I am back on track on back on my training schedule. Yesterday was rest day.

Just like I say, I need to train for the weather; I also need to train where I’m at. I could have calcium issues on race day and this will also help me to be prepared.

Check

Oct22

It is not an exaggeration to say I was at my peak as a runner in 2016 before my surgery. I had only started running in 2013 with the couch to 5K. By 2106 I was on my 3rd marathon chasing a sub 4 marathon and even ran a 50K. I felt unstoppable. I was working with my running coach who helped me meet many goals even a sub 2 half marathon. I was even 25 pounds lighter.

I timed my thyroid surgery around running the 2016 NYC Marathon.. At this point we all know what happened so no need to rehash. (Search posts to see how crashed & burned). I even ran the Runners World Hat trick as training for NY.

Here is the thing though while I’ve never let my Hypopara stop me, sometime it beat me. In 2017, I signed up for at the time the Runner’s World Bethlehem Festival quadruple play. I ran the trail. I ran like I didn’t have Hypopara. I finished the trail race and called it a weekend. I just didn’t have it in me to run the rest of the weekend. It beat me. This was my first DNS (did not start) for the other races.

I admit that I wasn’t trained enough to even think of running 4 races. Hypopara was still to new to me. I didn’t fully understand it and how it affected my body. It took me years and I’m still learning as it is always different, but I’ve learned.

I always figured that I would go back, but then the event was cancelled. Then a few years later, they brought it back as the Bethlehem Running Festival. This is why this past race weekend was so important.

It wasn’t about the bling….. which is very nice.

It wasn’t about feeling like a badass….which I kinda do now

It wasn’t about anything….

It was about proving that I could do this… even with hypopara.

I can’t explain why this event was important for me to finish, but it was.

Next:)

One Week From Today

Oct13

With any luck in one week from now I will be exactly where I am tonight. Comfortable sitting on my living room couch. Hopefully just as comfy as I am now. Although I’m pretty certain I won’t be as comfy as I now.

Next week…. Actually this week is the event I’ve been training for. The Bethlehem Running Festival. As a reminder it is 3 days of running totaling 26.2 miles.

Friday a 3.8 mile trail race

Saturday will start off with a 5K followed by a 10K

Sunday will be a half marathon

I’ve run this even in the past. Years ago. Except at that time it was only a two day event. This was pre-hypopara. I’ve done it Hypopara too, but not the whole event. I had thought I could do it but it was the year after becoming hypopara. I only finished the trail. It beat me and I just DNS. This time it is different.

Yes, I have something to prove. To prove to myself. I feel like I am ready. I feel like I know what I need to do. I need to run smart. I need to follow the plan.

Am I trained?

I think so. I’ve been following the plan with some tweaks, but following it. I ran a have marathon 2 weeks ago. This was a a benchmark for me. This was a run a smart race and see how it felt. It felt good.

I finished in 3:02.

This half was on a fairly flat course. The Bethlehem one is VERY much hills. I know that. I’ve been training hills the best I can. What I need to remember is that my goal is to run smart. It is not to be the fastest I can be, but to run steady. My pace was fairly steady and that is what I need to do. Oh and it rained a lot during the race. So there’s that

After my calcium crash, I’ve reconfigured and thought about my meds. I realized that last year I had been taking .5 Calcitrol twice a day. My doctor had lowered it to the .25 twice a day. This is fine when I was not running/training. So this week leading up to the event, I need to be precise on my meds. She prescribed .25 for up to 3 times a day. I will stick with this protocol this week.

I have still been trying not to add extra calcium while running, but adjust when taking. So when I did the half, I took my morning meds as normal. Then while running at about the half way point I took 250mg of calcium. I took the remaining 250 with my calcitroil and magnesium after race.

The key is to listen to my body. To push, but just the right amount.

More on race prep this week…..

Getting Back on the Horse

Sep8

Today’s run was definitely a mental one. Yes, it was physical because I was going for between 8-9 miles; but I was in my head a lot before lacing up.

Every run is a mental run from the procrastinating to the lacing up and getting out the door. There are so many reasons not to run. There are so many reasons to push yourself to get out and run too.

I needed to get out of my head today. I needed to remind myself that I can do this. I would be lying if I didn’t say that last week scared the crap out of me. I would be lying if it didn’t cross my mind to stop pushing so hard, to stay home and just say I’m throwing in the towel. While on my Hypopara journey, I have had tetany before. I have had muscle spasms. I have had the tingles, the brain fog, and been symptomatic. The difference is that I always felt like I still was in control as these symptoms were more annoying than anything else.

I won’t go into again, but last week’s calcium crash was bad. It scared me. It stopped me in my tracks. It reminded me that this is more than just annoying. This is real and needs to be taken seriously. I liked to pretend that it wasn’t and wouldn’t stop me. Honestly, I’ve been more worried about my kidney health than the actual Hypopara symptoms. I realized that I needed to take BOTH as seriously as I should.

This week was a stressful week at work. It was also the first week without summer hours. No longer leaving at 3, but 1. Doesn’t sound like a lot, but for those who don’t know I am also a childcare teacher. This means I am on my feet and really in constant motion both mentally and physically all day.

I wanted to run this week, but I didn’t. I could tell that I wasn’t ready. Yesterday I just didn’t have the energy. I had stayed up too late baking a cake. Oh yeah, I’m also a home baker. So yesterday I didn’t run.

This morning no excuses…. Except I was nervous. I prepared for my run giving myself an half an hour for morning meds to kick in. I filled my water bottles. I have the Fitletic running belt. So I filled 2 with water and one with electrolytes. I then put into the belt some kind nut bars, extra meds, and off I went. I also put back on my running Id that has contact info and also a “Hypoparthyroidism check calcium.” I had gotten a new band and never put it back on. I got complacent.

I started off running streets close to home making grids for the first three miles. I stayed close to home for the remainder of the run too. Not going too far out which sometimes I do for a longer run. Today was about keeping a comfortable pace. Walking when needing to, but not just because I want to. It was about listening to my body. At around 5 miles, I added some full in the form of some of the kind bar. At around 6.5 miles, I took 250 of calcium. Half of my normal afternoon dose. Then just kept moving.

I finished. I got to 8.5. At the end of the run I was thinking of doing a few streets to get to 9, but I figured this was enough……. And it was!

Mentally my head is back in the game. Mentally I know that I can do this but have to be smarter.

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.

Hope

Aug18

This was a full week filled with work, training and hope! So lets break it down….

Training has been going well. As I said, I am not going to do every run as a run, but I am doing my training. I also am trying to be proactive and went totally the podiatrist to get a new pair of orthotics. I have suffered with plantar fasciitis in the pst, so I am trying to get ahead of it. This is also one of the reasons that i am not doing all my training as running. There is a benefit to it.

I was surprised that when I went to the podiatrist he told me that the last time I got orthotics was in 2017. I knew it had been a while, but that is definitely too long for feet like mine. I am also trying to make sure to do some daily exercises and stretches. I really want to do all i can not to deal with the pain of plantar faciatis. Fingers crossed.

As for the hope……..

This week TransCon PTH was approved by the FDA!!!!!!!!!!!!!!!! This is now the first hormone replacement therapy approved for those of us with Hypopara. I am excited because I remember how I felt when I was taking Natpara (another therapy that was pulled). That being said, I also know getting on it will be a whole other hurdle.

When I was on Natpara it required special approval because it was not FDA approved. It also was extremely expensive. It didn’t cost me anything because it was all covered by Shire (the company) seeking approval. The cost was nothing to sneeze at since it was over $10 THOUSAND dollars a month. So there’s that, but I haven’t heard the cost of TransCon yet.

I am hopeful that even if it has a high cost that I would still qualify but I’m not sure cost wise if it will be affordable. Fingers crossed. I think that I would qualify since I am slowly damaging my kidneys with my high urine calcium levels. I check my levels every 6 months. My last 24 hour urine level was 560 even though I take “low” doses of calcium and calcitriol. My levels are usually over 350, but I’ve been over 500 a few times. For those unsure what this means, for someone without Hypopara a high level is anything over 250. They give some leeway for those of us with it, but anything over 300 is considered high….. So go me:)

These high levels are the reason I have said that I am trying not to add calcium into my training but work in the constrains of what I normally take. I may adjust when I take, but I really am trying not to add more unless it is necessary to keep my serum calcium levels in check.

Balance…

Balance…

Balance…..

So looking forward to the day that I can take an injection of PTH daily and then let my body do what it is supposed to do. Until then….

Here we are:)

Are you planning to get in line to get on TransCon?

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.