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!

Here We Go

Jun21

If you’ve been here a while, you know about my Hypoparathyroidism. You know the struggles. You know I’ve been waiting and hoping for getting on a hormone replacement therapy.

I started the process. I expected to have to fight my insurance company for approval. I have been pleasantly surprised. I got the call that I was approved.

Then I got a call on Monday that it would be shipped this week. I spoke with the nurse who walked me through the process of the daily injections. I spoke to my doctor and was ready to go.

Logistics:

Went for blood work prior to starting. (Side-note – what I found funny is that my levels were good, but I was still symptomatic with muscle spasms that night)

I am starting on the middle dosage injection.

Going from .25 Calcitiol three times a day to once.

Keeping calcium as normal while body gets used to it.

Going for blood work in three days. Will touch base with doctor and go from there.

Physically

Just going by feel now. Took first injection this evening at 8 pm. I really had to think when I would take it as has to be same time every day. Mornings too crazy especially now while this is all too new. Plus I am usually home in evening.

Mentally

I’m worried about low calcium during transition.

I’m worried about high calcium during transition.

I’m excited. I’m nervous. I’m anxious. I’m all over the place.

At the heart of this though, I am looking forward to my body working the way it should again.

It’s go time

Slow and Steady

Jun18

We are searching for that magic pill. Some are even opting for an injection instead. I get it. Sometimes it is necessary. Sometimes there are medical reasons that would require such extreme measures. Sometimes there isn’t except that loosing weight is hard. I’ve thought about other options, but as I mentioned before I signed up for weight watchers at end of April.

I am the type of person that needs a plan. In my 40’s when I lost 20 pounds (before gaining it all back and more), I used the South Beach Diet. While it helped, it is not a healthy diet for me nor did I want so much a diet as I wanted to retrain my brain/body to eat healthy.

So here we are 7 weeks in and 11.4 pounds down.

Steady…. Slow but steady

As you can see from my step goal, I am doing well. Probably because as a PreK teacher, I am rarely off my feet during the day. So that seems to be working in my favor. I am trying to be steady in working out. I, honestly, have not been running since the Brooklyn Half. I’ve been walking, indoor biking, and weights. I have not been as steady on that as I would like, but I do know that I am gearing up to start my Hat Trick Training at end of July. So theres that.

I like a plan. I like an easy plan. I have found the plan that is now working for me. Tracking which I’ve tried before and never stuck with seems to be working for me now. I think the overall approach to Weight Watchers is what is working for me. I’m not just tracking my food. I am assessing and thinking about what foods I am eating. The daily points have made me think, “is it worth it” when thinking about food choices. I am also encouraged to move more to get more points!

I still don’t feel like I am necessarily on a diet, but on a healthy eating path. When I pack my lunch, it is both tasty but also weeding out the easy to grab processed foods.

Breakfast, lunch and snack for the day.

That being said, I am still eating a cookie which I track. The thing is I am thinking just one cookie and not several. A small piece of ice cream cake and not a full slice. I don’t want to deprive myself. I just want to find the balance.

I’m not going to lie though…… I know hitting my goal weight is going to take time. I know it’s going to be harder than I want it to be. I know. I know. I know….. but, but , but ……….I am now one pound less than I weighed in last seen 2019. So that is a win! I am also a little less than 5 pounds away from my first goal weight. Then after that 15 more.

It is going to take time. The weight didn’t go on over night, so I can’t expect it to come off overnight either.

Onward….

I (think) I Carry it Well

Jun1

Today, June 1st, is Wold Hypoparathyroidism Awareness Day.

If your not part of Hypoara community, you probably never heard of it. That’s ok, I never heard of it till 9 years ago when I joined it after my thyroidectomy in November of 2016. I joined the estimated 70,000 to 100,000 individuals in the United States who deal with this…

Told you I was rare:)

Anyhoo…

As I told my family when I had a serious calcium crash recently, I carry it well. Or at least I think I do. Maybe I don’t, but it’s my story to tell. So I go with I carry it well.

I do what I need to do, deal with what I need to deal with, and still know that there are those with much worse complications than I have.

I am lucky.

Yes, I have to take my daily pills

Yes, I deal with low (Hypocalcaemia) calcium symptoms….

I am lucky because due to the location I live in, I have been able to learn from and be treated by an endocrinologist who not only is familiar with this disorder, but also is a leader in the field. She runs FDA studies which I’ve been also lucky enough to participate in. I am currently half way through a 3 year study on how Hypoparthyroidism effects the body. I feel like without her guidance, I would be in a much worse place physically as the I saw 2 other endocrinologists since being Hypopara. The first one I saw right after diagnosis had no idea and had me taking way too much calcitriol. My first 24 hour urine which I got after starting with My current endo had levels almost 600. (Normal is under 300. For those with Hypopara, try to keep under 350 which I am)… High urine calcium levels can lead to kidney issues.

Anyway…. Many people ask what exactly is Hypoparthyroidism as they say they take calcium too.

Many people ask, “What does this mean?”

Here is the science part:

The Parathyroid’s job is to create PTH (Parathyroid Hormone). With HypoParathyroidism, your body no longer produces this hormone which controls calcium levels in your blood as well as phosphorus and vitamin D too.

The reality:


Without PTH, I need to regulate my calcium among other things through prescriptions and supplements….

Calcium and calcitriol

I need to do this multiple times a day to keep levels up. It is a balancing act as the healthy body normally adjusts these things on their own. Also needed levels change depending on activity levels, stress and daily factors up to and including the weather. It is not one size fits all. As I’ve said before, think diabetic adjusting levels without way to check insulin levels since calcium can only currently be checked with bloodwork.

Symptoms/levels can and will appear/change whenever they feel like it. Symptoms from brain fog, muscle cramping and spasms,fatigue and more…. I work very hard to be business as usual

Sometimes that doesn’t work out so well.

A crash like this is a rare occurrence for me. This was a bad one. My doctor understood why I had my friend drive me home and not go to ER for calcium infusion. As I said to her, I knew I had the meds at home to handle it and was afraid at how long it would take to be treated/understood at hospital. The concern for extreme crash would be “cardiac event” as she called it. So there’s that, but I knew the meds were working, and I do not play with my health even if it seems like I do. I was in contact with her immediately after and she directed me in my recovery.

At my last visit, we did discuss how while this crash was bad how I have been more symptomatic recently….more the tingles, muscles cramps and such. We are starting process to get me on the newly FDA approved hormone replacement therapy. It will be a song and dance to get approval as it will be no surprise…… IT IS MAD EXPENSIVE. Like big, big, big expensive.

So we shall see, but there is hope soon…. crossing fingers and toes!

So on this World Hyporathyroidism Day, I share with you that I know we all have our own struggles, that we are all rare, and that most of all we just keep need to move forward.

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.

Two Weeks In

May10

As I’ve mentioned in a previous post, I started Weight Watchers. I will admit that I have always said that I was not one to count points and it wasn’t for me…….

I was wrong.

Maybe back in the day when you had to do all the counting and calculating. That is no more. It couldn’t be any easier to use. There is a recipe calculator. You can scan bar codes. A “what to eat” tab with featured recipes and lists of all the zero point foods.

Honestly with all the zero point foods, you can eat and eat and not feel deprived. It does require a little planning, but we all know it is the mindless grabbing of food that is the problem for many of us as is processed foods. The one consideration is that it definitely more costly to eat fresh, but that is not weight watchers fault. It is sad commentary that a bag of potato chips is cheaper than a container of strawberries……. But I digress.

Anywho….

I’ve been consistently tracking. I’ve been managing my points. One thing that I do like is that besides daily points, you get what they call weekly points to use anyway you want during your week. These points also increase as does your activity. I didn’t understand that at first, but now use them.

I also am not depriving myself. This week was teacher appreciation week that brought goodies and I also went into NYC for a Hypopara study visit (more on that in separate post later). I ate what I wanted to eat, but maybe pregaming pizza lunch with a zero point salad. Then having only one slice of pizza instead of two. It is about thinking about the food you eat.

This was all only 2 points and that was for the feta cheese.

One thing that tracking made me think about is the number of calories that I drink. While I by no means will be giving up my coffee, I realized that for some reason using agave in my coffee was more points than regular sugar. I then realized switching to monk fruit sweetener was even better. Also had to rethink my morning smoothie which while always healthy needed to be adjusted.

So I will continue to do weekly updates with the good and the bad as I did sign up for the next several months. My first goal is 15 pounds. Ultimately I would like to loose a total of 30 pounds. Time will tell.

Currently I am heading in the right direction. Down 4.2 pounds. This feels like not so much a diet as a reset and shift in eating habits. It is about being the healthiest version of myself which the added weight has not been helping.

Stay tuned.

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.

It is Enough

May1

Shhhhh… Don’t tell anyone but….

I am overweight.   Thanks to many factors, I might be adding instead of subtracting pounds.   Based on charts, I would be considered obese.   I am out of shape.   When I run I have been known to huff and puff.   I am not as strong as I used to be.    I am not as flexible as I used to be.    I’m definitely not as young as I used to be!  Sometimes I look at pictures and think…. Damn, what happened.

To be honest though while it does cross my mind on occasion, most of the time I just don’t give a shit.    Does my weight determine how I live my life?   Not a chance.    Does my weight determine if I head out the door to run or exercise?   Nope.    Does it keep me from living my life and doing the things I want to do?  Never.  Does my weight effect the way I fit in my jeans?   Yup.    Does the size of my jeans affect my overall life happiness?   Hell no!

All my life, I’ve been beating the odds.   I’ve been the one who was picked last for gym class.    I’ve been the one who is looked past and over.    I say this not for a pity party because who needs that.   I say this because at this point in my life, I don’t care and if you didn’t pick me to be on your team I wouldn’t want to play with you anyway.  If you look past me, no worries because I’m probably have a plan of where I need to be anyway.

I say these things because they are true.   I say these things because they are what made me who I am today.   They made me stronger.   I had to find my own self worth.   I had to find what made me who I am today.   I define who I am.   I define what I am and what I will do.

Now please don’t take that to mean that I don’t need others and others opinions aren’t important.    I’m just saying that although it is nice when others build a person up that you must learn to build yourself up first or it means nothing.    If you spend your life looking for validation from others, you will never truly be satisfied or know your worth.

So while I know that some might look at me at shake their heads wondering how I consider myself a runner and  an athlete, I do.    I know that I don’t have the speed of some.   I don’t have the agility or endurance of some.   I don’t have a lot, but what I have is enough.

I have the will.   I have the desire.   I push myself when it’s hard.   I push myself to be more than I was.  I strive to be better, stronger, faster than I thought I could be.   I also know that what I have to offer is enough.    That while I could always be better and improve myself, that who and what I am today is enough.

And while all of that is true, we all know that I have talked about trying to get the number down on the scale. At my last doctor visit, I had gained an additional 10 pounds which was always the number I said I couldn’t hit. My doctor said something that stuck with me, “Don’t let this be your new normal” after I said that to her.

Since that visit in December, I have tried on my own a few different ways. None of them stuck while the weight did. I very much like to have a plan. I think I’ve found one that I’ve been doing for a few days now. I like it. It makes sense to me and it is easy to follow.

So with that I will say that I signed up for Weight Watchers. I signed up for a 10 month plan as I have 30 pounds as my goal.

More to follow

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.