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.
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.
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.
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.
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.
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?
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.
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.
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.
I had thought about it, but was not motivated. I could not force it. I could not fake it until I felt it. I just wasn’t there.
Not even a smidgen.
I couldn’t pretend. I couldn’t show up. It’s not even that I wasn’t motivated. It is that I just didn’t care. I didn’t miss running. I didn’t miss working out. I didn’t even have a spark.
I was tired. Like really, really tired. Now to be honest, I’m still tired. I’m still sore. I’ve still got a lot of things going on. Working full time, baking, and medical stuff. But there is a difference now.
I am actually ready to begin. I am not being forced into it. I want to do it. This is good now too because I got into the NYC Half Marathon. My training plan starts next week and here’s the thing……… I am excited to be starting. I am excited to try again.
I do also have a motivation. I had my physical earlier this month. Somethings expected. Things like being overweight. Cholesterol going up a little bit but not enough for medication which I am happy about. I don’t want to add anything else as the Hypopara is enough. Super High urine calcium levels as always (due to meds/calcium needed for the Hypopara) – Not unexpected, but concerning. Not much to do right now as I don’t qualify for the trial of the PTH therapy. The surprise was the pre-diabetes.
Whelp……….
That will be a wake up call.
Although this wasn’t what made me ready to start. This was the final motivation to do so. Timed perfectly with getting into the NYC Half.
So here is being ready to train. Missing the feeling of running and wanting to be better. What is nice is that I will be doing a recheck of my labs in March to see if a follow up is needed, but this is same time as the HM.
Here’s to doing better.
Here’s to feeling better.
And most of all….
Here is to actually wanting to Start again.
I’ve already taken the first step and started at a gym getting set up to work out.
I know it won’t be easy. I know my body will resist. I will be sore. I will be tired…… but here’s the thing
The Accidentally Running Mama 