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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!!!

Find Your Joy

Mar3

While no one believed me even though they knew I wasn’t really running or training, the truth is out there:). This is the first year that when NYC marathon lottery came out, I did not have even an inkling of an itch to put my name into it. I got the emails and was like… nope….. delete…. No thank you.

I just got the email from Sandy Hook Promise to put my name into for consideration for charity runner……. Nope….. not this year….. will continue to love and support the team….. but…. Nope…. Delete.

This is how I know I am finally, finally, finally at peace with not running so hard. Not training so hard. Honestly, I could take “so hard” out of those last two statements as I haven’t been doing either lately but I am trying to find my groove.

For right now, I think I might actually finally be at peace for what I am both physically and mentally able to do right now. I think I finally realized that for right now in my life this is not something that I need to or should be doing. I 100% believe that I am not done being a marathon runner and 100% believe there will come a time where I will both want and actually run another marathon. For right now though, I just do not need or want it in my life.

I am taking the Maria Kondo approach to my running. Does it bring me joy?

The answer has been no – not at those miles, not at feeling like it was something that was expected that I “needed” to do, or that I was doing just to do. There was no joy. No passion. So that begs the question, why put my body and mind through it? Running and training for anything more than a 10K has not been joyful. It has been to hard for many reasons. It shouldn’t be so hard.

Here is the thing too…….

Since I recognized and admitted this truth, I am moving more. I am doing yoga. I am doing stretching. I am doing some strength training. I am walking. I am finding the joy and health in recognizing that while my body is not anything close to perfect, it can still move.

Life is hard enough without making it harder on yourself for the sake of making it hard…… without adding something that we were forcing ourselves to think we needed to do it for various reasons. Since my surgery in 2016, I have said I needed to step back and give my body a break. Yet, I never did. I always had one “valid” reason after another why I needed to run another marathon, why I needed to keep pushing. It was always about I need to keep pushing….. If I give my body a rest, than somehow that shows how week I am. That the hypopara wins….

Guess what?

That is crap. Everyone’s body changes. Everyone’s goals changes. Yes, prior to my surgery I was chasing a sub 4 marathon. Guess what? I’m not going to get there. I wanted it and could have had it prior to surgery if I didn’t blow my pacing, but thats a different story. Anyway, I guess it’s been a long time coming and although I thought I’d done it before, but the fact that I kept signing up for marathons showed I really didn’t……… I get that my body is not the same. I get that for right now, I just don’t want to.

Let me be clear.

I do not want to run, train, or sign up for anything more than a 10K. It is freeing to not only say this but finally realizing that I really mean it. It is also freeing to say that I think that I will run long distances again…… ONLY when it will bring me joy.

Find your joy……..

Embrace your joy…..

Most of all……… Be Kind to yourself and know that what ever you do should both bring you joy and is enough.

Tell Me Why?

Feb21

I’ve been thinking a lot about my Why?

Why can’t I loose weight?

Why is it so hard to start and so easy to give up?

Why does it matter because I’m at the point as hard as I try it’s not working?

Why are my legs so sore all the time?

Why don’t I have the energy I use to have?

Why does it even matter at this point?

Why? Why? Why? Why????

Some answers are easy enough and may sound like a broken record.

I don’t have the energy and my muscles are sore because of the low calcium due to the Hypoparathyroidism. That in leads to the why can’t I loos weight because you have to be mor active for that to happen, but there are other factors in play. You know the “a woman your age” factor. They “your metabolism isn’t what it used to be factor.” Plus I will say that due to the lack of energy and other unknown reasons many in the hypopara community often speak of the difficulty of loosing weight. Although I think based on the massive diet industry that is not unique to us but does add another layer.

I was recently looking at running pictures prior to my surgery.

The days that I was training hard, running fast (sub 2 half) and kicking ass. I had drive. I had ambition. I had the ability to push myself past where I thought it could go. And I’m now in the chicken or egg stage because I don’t know if I no longer have this drive because I know I can’t push myself or if I stopped pushing myself and lost the drive. To be honest though, I think it is because I realized that in order to run the long miles, in order to run the faster paces, in order to expel so much energy that means taking more calcium which in the long run is not what my body needs (the high urine calcium levels show that pretty accurately). I know I can do it. I know I can just pop more calcium and my blood calcium levels will remain stable, but that isn’t something I’m willing to do. You only get one body and I’m trying to do the best that I can.

I have said that I won’t run another marathon until I am back on some (like there are many to choose from) PTH hormone replacement therapy. Natpara isn’t coming back. There is a new one on the horizon (TransCon) but is not FDA approved. Then there is the real worry that even when approved that it will be cost prohibited and insurance won’t cover it. When I was on Natpara, they had a rebate plan to make it “affordable” as when I say it was big money I mean it was big money. Like $10,000 a month money without rebate. Ascendis Pharma owner of TransCon in an earnings call made it seem like there would be no rebate since they literally own the corner of this therapy and it will be a money maker. So there’s that….

Anywho….

Last week when talking to the Nutrionist I said it’s been a roller coaster because I just can’t seem to care because nothing I do is making a difference. I can’t eat my way out of Hypopara. I can’t change my diet enough to not take the calictriol and all the calcium that is so hard on the kidneys. So that lead me to be like….WTF I might as well just eat that pint of Ben and Jerry’s. She got it and she is actually going to do some research on Hypopara to see if there is something we can do for my diet to add more natural calcium that might not be so hard on the kidneys. Between that and FINALLY being able to get an appointment with a specialist who is not only familiar but an expert on hypopara, I have a little hope. Although something the Nutritionist said did stick with me…….

She pointed out (paraphrasing) that while working with her and following the plan might not actually be doing the magic trick I wanted, it is still beneficial. In that it can help to keep other health issues at bay – Keep my cholesterol in check (as it is just under being high). Keep my sugar levels in check. So many other health issues from hypertension to diabetes to even my sleep apnea can benefit from following a healthy diet.

So theres that.

So how am I doing with my goals of dinner and exercise? I’m making progress. I’m being more intentional. Most of all I’m trying.

My why for so long was to reach for something that for now is just out of reach. My why needs to be to just do the best I can with the hand that I have been dealt. Like running a race, life is about learning to bob and weave. I kind of forgot that…

Middle of the Road

Feb16

Showing up for ourselves seems easy enough, yet might be the hardest thing we do in our lives. We always make space for everyone else – For what we need to do for them……. What they need…….. What we can do to make the happy…….. on and on the list goes of what we will and can do for others.

Here is a news flash…….

Not only is it ok to show up for ourselves. Not only is it a necessity, but it should be at the top of the list not the bottom!

Today I had my meeting with my nutritionist. I will admit it, I thought not only more than once but up until I logged into my video appointment of cancelling. I had several very good reasons why cancelling (ok not good, but really good excuses). They all made sense from what does it matter to I haven’t done any of the things I was supposed this last month. I also admit that the only reason I showed up was not for myself but because I figured if I cancelled last minute I would still (rightfully) be charged for the appointment.

So I begrudgingly showed up.

It was the right thing to do mostly for myself even if that wasn’t what propelled me to log in.

I honestly told her that I almost didn’t show up because I wasn’t in the right space and didn’t know if anything we had been doing was even making a difference and worth it…… She’s good and we talked through it. I left in a much better thought pattern than I went in with. She also has my number more than I realized.

In talking to her, she pointed out that I am an all or nothing person. She was like that is wonderful on one hand because it propels you to run marathons and do amazing thing, but the flip side is not as good. So the goal this month is to try and be middle of the road and know that it is 100% ok to be middle of the road! Focus on what I can do. What is in my control. So maybe for right now I am not training the way I used to be, but that doesn’t mean that I need to be stationary. Middle of the road…….

I walked away with a focus for the next month not just on my nutrition goals but also on movement goals. Baby steps on both.

Nutrition….. I have breakfast down with my smoothies (yup, still do them). We are not focussing on actual goals this month as far as numbers of proteins vs carb and such. The focus is just to show up. To think about what I can do to meet my meal goals and how to get there. So by focusing on dinner, that might carry over to lunch as I am going to make extra portions to possibly utilize for lunches. I am also going to look into meal prep services to help get me back on track just being cautious of sodium. But one step at a time…. Which leads to movement

Right now my body is constantly sore. Legs often feel like they have done much more than they actually have done….. so lets take a step back. Slow down. Do something daily either a walk, stretching, but something every day. It doesn’t have to be all or nothing….. it can be middle of the road.

So here is to finding the middle of the road and realizing that it is a good space to be

Lastly I am going to send her my latest labs, so she can do some research to see if she can be of better service with nutritional needs. Told you she was good:)

Living with Hypoparathyroidism

Feb15

I have a confession to make……

I miss Running.

I miss running fast.

I miss competing.

I miss waking up and not feeling like I’ve run a marathon when I’ve done nothing.

I miss having a body that works the way it is supposed to.

Yes, I am having a pity party today. It happens from time to time. You would think after 7 years of having Hypopartyhroidism that it wouldn’t, especially when I know how lucky I am compared to others that struggle so much more. That being said, my struggles and pity party don’t take away from their struggles or any struggles you are having. We all have our baggage filled with things we wish we didn’t have to carry or wish on anyone else.

Here’s the thing…..

I am tired of constantly having low serum calcium levels and all the fun that brings (said with heavy sarcasm).

I am also tired of at the same time having high urine output calcium levels and all the worry and stress that comes with that.   Like waiting for the shoe to drop but the shoe is kidney stones and damage.   Just waiting…. never sure if it is coming, but knowing that you have to be prepared.   Like the unwanted visitor that says they are going to drop in but you aren’t sure if they really are coming and if so when they will arrive.   

The stress is real.

The worry is real.

My feelings are both real, valid, and in hypopara community probably more widely shared than people outside it realize.   Anytime you have a rare out of the box diagnosis, it is hard finding the care you need.   It’s not that the doctors don’t care, but they might not understand and just look at the numbers.   The numbers don’t always tell the story and often you feel like you are hypochondriac.   Often the doctors will make you feel that way too (insert any rare disorder)

Lastly….. I miss going to doctors and feeling like they know what they are supposed to know to treat me.   I never questioned that prior to 2016.   I’ve learned since then that if you are outside the box, they might think they might know more than you but chances are you’ve done your homework and they might not have.    Now don’t get me wrong, I know in the whole scheme of things they know more than me but when it comes to me and my diagnosis I’ve probably done more research than them.

I’m trying to find a doctor that I can go to and know they know what they know, but when you have a NORD (National Organization of Rare Disorders)  diagnosis that is often harder than it should be. I will further add that insurance is also a stomping block as is the cost of treatment, but those are a whole different post/issue.

So I’ve been struggling. I’ve been keeping it all in. I’ve been quiet in my communications, but I’m trying to climb out of my shell, be open and honest, and put it all out there. We all have our struggles. We all feel like we don’t want to burden others. We all feel like it is our burden to carry alone, but the truth is that when we share these burdens with those in our lives (don’t worry I’ve done that too)…… while it doesn’t make them go away, it does seem to lighten the load.

So if you are carrying a burden…… If you are struggling (with ANYTHING)……. If you feel like no one will understand…… If you feel like everyone has their own shit and you don’t want to add to it with your problems………. You might just find, that they want to know. That they are there for you and that being there for each other in the good and bad is what makes your tribe your tribe and if you don’t think you have a tribe reach out to someone and you might be surprised.

Complicated

Jan25

Complicated Relationships

I have lots of complicated relationships. To be honest, who doesn’t?

I love my blog, but I have not been great about blogging recently…… Complicated

I love to run, but haven’t been running much lately……. Complicated.

I want a clean house, but I hate to waste time cleaning it….. Complicated

I want to be a size 8 or honestly I would take 10 at this point, yet really don’t do what is necessary to make that happen…… Complicated.

I miss running with my friends, yet don’t seem to have the time to meet up with them as our schedules don’t mix….. Complicated.

I have a VERY complicated relationship with food.   To be honest, who doesn’t?

The problem I have is the all or nothing mentality and often we might be the ones complicating things more than they need to be.

As I previously mentioned, I’ve met with a nutrionist a few times now. She has given me some good feedback. We have talked about different food choices, adding more protein to diet and less carbs, and looking at better options overall. Things that most of us all know, but she has given some good tips. Overall it has been worth it.

Here is the complication though……. While I know everything she says is valid, I am beginning to wonder if I have the conviction to actually follow through. So far the answer to that will be a resounding no. I can’t even get myself to track my food choices for a day or two. Now maybe it’s because I know where I’m going off track and I don’t want a paper trail to remind me. Maybe it’s because I’m not determined enough to follow through. Maybe….. Maybe….. Maybe….

There are so many reasons we don’t reach where we think we want to go and I maybe to the point where I, honestly, am not sure I want to got there anymore.

I just had my physical in December. Cholesterol only went up 4 points and blood pressure is still really good. So while I have all the other stuff with my Hypopara going against me, relatively everything else is looking ok.

So now the questions I need to ask……

What do I really want and what am I willing to do for it?

Simple.

Yet, complicated….

Answers will be coming shortly and probably changing as time passes.

Too Much of a Good Thing

Oct2

I’ve met with the registered dietician on Friday. This was our second meet up after a consultation with her last month to see if we would be a good fit. She is a registered dietician and nutritionalist who also has a focus on endocrine and kidney disorders (Hello Hypoparathyroidism!). After our first meet and greet, we thought food tracking might be beneficial as it is hard to really make changes until you know what needs to be changed. Seems resonable!

So tracking I have tried to do. I even bought a year of myfitnesspal as a motivator. Now tracking is NOT hard because they really do make it easy. What is hard is telling yourself that you will track something later and then not doing so. Then the days where you know you are going to eat like a High School wrestler hoping to bulk up for his weight class. I have not been perfect but I have been fairly constent and as with everything in my life, I am trying to do better

Here is to trying to do better!

One thing that was very obvious is that I am not eating enough protein. Now for kidney issues, I am really supposed to avoid animal proteins which as a pescatarian I was already doing. That being said, plant based proteins are important especially when trying to create an exercise routine with good muscle recovery….

My bad.

Another thing that became VERY obvious is that I am eating way, way, way too many carbohydrates. Let me just say way one more time. Let’s admit it though. Carbs are tasty. Carbs are easy to grab on the go. Plus not all carbs are bad, but too many carbs is still too many carbs especially when not paired properly.

Case in point a random day in September where I tracked my whole day.

Not necessarily hitting my targets. Sometimes even when we think we are eating heatlhy, overal we are not getting all we need or too much of what we need. In talking with the dietician, it became apparant that there is too much of a good thing. Such as my morning smoothie. I was going with the add as much fruit as possible which is not really the way to go.

Sonal, dietician, asked me; “If you had to sit down to eat everything that you put in your smoothie for one meal, could you?”

The answer was a resounding no. The baker in me loves creating and I was using my smoothies for an outlet, but it really was too much. I am normally a too much kind of person. Lol. She suggested limiting the smoothie to 2 fruits taking into account the could I eat it all in one sitting mantra. Also making sure to add some protein to the smoothie in the form of a powder or food source (chia seeds, nut butters). Also adding some filling fiber such as oats, flax seeds and spinach. I can work with that! Kind of have been doing it, but in an over the top way.

Sometimes less is more of what we need and I’m trying to remember that.

While this morning smoothie was carb heavy, I also knew that it would be followed by a long bike ride and run. But it was also a good balance of protein and fiber. Balance.

Just Doing My Best

Sep29

I wake up tired.

I am tired all day.

I fall asleep on the couch…..tired

I don’t always sleep well in bed though.

Could be age. You know having to get up for the bathroom.

Could be damn Cpap machine that gurgles, hisses and is stuck on my head.

Could be the hypopara muscle aches and all the fun that goes with it.

Could be mind spinning and spinning.

Who knows. Sleep is a mysterious thing which is why I assume there are so many books about it. That being said, all this tiredness makes for an unmotivated not moving as much as I should be person.. All I know is that I am not alone in my struggle. The struggle is real and so many of us go through it.

i will be honest too…… Staying on track is hard. Staying motivated may be even harder. The why bother it never works devil is real. The does it really make a difference voice is loud. The does it even matter whispers are shouts. What is the point is the biggest struggle. Round and round and round it goes till you are paralysed into doing nothing.

nothing.

nothing

nothing.

No plan.

No blogging to keep yourself honest.

No coming up with goals but finding so many excuses.

Now here me out……… Some of these “excuses” are vaild. Many of them are real making what feels like an impossible situation like climbing a mountain without gear. I often forget though…..

I can do hard things!

I have done hard things.

Now the question I have to seriously start asking though…….

Do I want to do them?

What is the benefit of doing them? What is the detriment of not doing them? And the absolute hardest question….. Why am I afraid of doing them? Of making a plan…… of sticking to it…. Of being willing to falter….. of doing something even if I am the only one who cares that I am doing it?

The truth boils down to….. Fear of failure. Fear of stating that something I strive for might be out of reach…. We don’t stop growing because we fail, we stop growing because we stop trying.

I, once again, might be ready to face reality and try. There are some truths to. I have medical condition that makes trying harder some days them others. I am a home baker. There will be snacks but I can adjust. I am a middle age woman with the metabolism of a dead person. I need to move more and make excuses. I need to at the very least try.

Goal #1

I need to eat healthier.

Goal # 2

I need to move in a more constent manner and come up with a plan.

Goal # 3

I need to make myself accountable. For me that will mean documenting it all. The struggles. The small (and hopefully) big victories and just be real that it isn’t always going to work. So I need to adjust and not give up.

While this morning, I did weigh myself and take measurements, weight is not the goal. More importantly, the numbers that I need to improve…. Cholesterol, calcium, kidney function and the rest will work itself out.

so here is to trying!

Getting it done!!!!

Sep18

Today I finished a Sprint Triathlon that I’ve been loosely training for but steady enough that I felt confident that it was enough. This was not the race that I envisioned but was definitely the one I should have expected for several reasons…. Training being a key one.

I have been swimming. I have been biking. I have been running. I just might not have been doing enough nor did I do enough brick type workouts. I also realized that I never did one that incorporated swimming.

Here is the breakdown

Weather was literally picture perfect. Not to hot. Not to cold. Seriously just right.

The water looked calm to me, but that might have been because previous tri’s had extremely choppy waters. No wicked white caps of the past. To me it looked calm but hubby thought it looked choppy. Eye of the beholder I guess. Water temp was also perfect. Not shocking to walk in. So I got in the water feeling confident. Right up until I put my face in the murky water and a womans foot was kicking towards me. Luckily she did not connect. Then at the same time, a woman next to me started yelling “lifeguard. I need a lifeguard.” Then she was like “nevermind, I’m ok.” She may have been but I wasn’t. It really freaked me out and the rest of the swim was not so much a swim with all swim training going out the window, but an I’ve got to keep my head above water so I can keep saying WTF, WTF, WTF. I did no breaststroke. No butterfly. No backstroke. I ended up doing a combo of doggy paddle, sidestroke, and flailing in the water. I think lifeguards might have notice my non swimming swim as I noted one that seemed to follow me on his paddle board and then as I got clost to end was like “you’ve got this.” Lol

And I did….. Pulled myself out of the water. EXHAUSTED as I did not have a smart swim that didn’t expel a lot of energy. Shockingly I was 10:57 which I would have sworn was at least 20.

Get myself into transition and my head is not on straight. I am not thinking straight. I am exhausted. I am just thinking, put shoes on and go. Forget to put water on bike that had calcium in it (mistake). Don’t’ drink anything since I think I have my waterThrow a couple of jelly beans in my mouth and off I go. (1:04)

Almost immediately I feel how dead my legs are and the how exhuasted I am from swim. My lips start to tingle. I am just on autopilot. While biking, I did NOT pass one person but continuously heard “on your left.” To be honest during first lap, I thought I would not finish. I was contemplating stopping, But I didn’t. I just kept peddling and going. The volunteer at the turn around was saying, “slow down turn ahead.” I told him that if I slowed down anymore, I would be stopped. He said, “your are moving faster than those sitting at home.” So I kept going. 3rd and final loop, a 67 year old woman Kathy rode with me for a bit and we chatted. Then she passed me but I kept her in site. I made it to the finish of the bike as the last rider in making the elites look like elites. (1:07:43)

This time in Transition I remembered to drink some gaterade and more importantly talk some of calcium and my calcitriol. Contemplated stopping to use bathroom but figured if I stopped, I would never start. So off I went. (2:08)

With jello legs, I left for the “run.” Although I might actually call this a walk with purpose with short sprints of a run like you do when in a crosswalk and a car is coming. At this point, I knew no matter what, I would get to finish line. Part of me felt like I should push, but the part of the brain that deal with reality won out. There was no need to push myself to the point where it wouldn’t be good. This was not the day for that.

The last mile, I reconnected with Kathy and shadow followed her for a bit. We reconnected the last leg and walked for a bit. Then when we neared the finish, we ran. She asked if I wanted last or second to last as we were last on the course. I said, I would take pride in being last. We crossed the finish line together and hugged at the end. It was perfect! (44:22)

2:06:12

I seriously take pride in finishing. Done is done and that is all that matters!

Holding Yourself Back

Sep6

In trying to figure out. Trying to come up with a plan. Trying to put the pieces together when I always feel like one is missing. Trying… Trying… Trying……One day I might know until then, keep working on –

How to move forward….

How to get back and stay on track…. (Does anyone ever stay on track?).

How to reach goals that I have been putting off setting….. ( Because if you set a goal, then that means you have to make a plan. If you make a plan, then you need to be accountable for following that plan)

I realized something…….. Once again, I was putting myself in a holding pattern.

Hear me out……..

I realize that once again I’ve been living in fear. I’ve been waiting for the shoe to drop. Funny thing is once started to drop, I realized that while there is a lot that I have no control of that by pretending the future is now that I am missing the present.

Point one…..

When you have Hypoparathyroidism, you have to usually take boat loads of calcium, prescription forms of Vitamin D on top of other things. Anywho…. As I’ve mentioned before, this is hard on the body. Kidneys especially. I’ve had high levels of calcium in urine which is not good. I’ve had some things indicating that maybe this was heading where I didn’t want it to go. I’ve also been lucky not to have had kidney stones and other issues, but it was always there in back of my mind.

Waiting

Waiting

Waiting

Get some results back and shows that my eGFR rate is dropping. 2 years after being Hypopara it was 73 (still in normal range) but enough that I worried about my kidney health which made me feel like I was being a hypochondriac. Guess I wasn’t because now 6 years in my eGFR has continued to drop 56 which is out of normal range and indicates that kidneys are not working properly otherwise known as CKD. As a side note, for a woman my age it should be in 90’s. So not great but not as bad as it could be!

Now the thing is doctors don’t seem overly concerned at this stage, but I am. You know, you only have one body thing. Also might be reason to switch to a nephrologist who doesn’t wait for things to get bad before thinking it’s a big deal. Anyway, these numbers while not great also were the wake up call that I needed to realize that…..

EVERYTHING IS NOT OUT OF MY HANDS!

  1. Being overweight is not good for many things including kidney health. Now, there was a time when I could say that my extra weight wasn’t effecting my health and at the time that was true; but that is no longer the case.
  2. My nutrition could be better. I’m not talking about nutrition to loose weight. I am talking about making sure that I am eating the right foods. Getting the right proteins, carbs, healthy fats.
  3. There might come a day where I can’t do the things that I want, but I am not even close to being there now or in the near future!

so what to do….. what to do……

Well one and two go together. While I’ve met in the past with a functional nutritionist , this time I wanted to meet with someone who focused on kidney health. I found a Registered Dietitian with all the right credentials who among other things works with endocrine, kidney and weight loss issues. (All the boxes and then some checked).

I could (not easily) go on a diet to loose weight but if it is not the right diet for my health than loosing the weight means nothing. Last time I dropped a decent amount of weight it was between son 2 & 3. I did it with the South Beach Diet which is very much not the type of diet I should use now. My goal is not so much the weight loss but finding the right diet for kidneys and hypoparathyroidism. Loosing 20 pounds would be the bonus and one I am now actively working on.

My goal though is to change my numbers around as it’s early enough to do that and if I can’t turn them around, slow them the (beep) down!

So with all of that weighing on my mind, I’ve been acting like I am already at the point where I can’t run anymore. Now that’s just crazy talk…… Like Serious crazy talk……. Maybe…. Maybe…. Maybe….. one day, but not yet.

Now I know that just with Hypopara, my running has changed but I’ve been getting it done. I’ve been doing what I can but I’ve been holding back because I was waiting for what I don’t know. Kind of like when you put off cleaning out your closet because you just don’t want to deal with it. Then you realize that once you start tackling it, it’s not so bad.

So it’s not so bad!

Plus I’ve been training for my triathlon. I’m not trained trained. I feel like I never am anymore. What I am is trained enough to know that I will make it out of the water and still be able to bike and while not run, will be able to at least walk to the finish line.

oh did I mention that event is 12 days!!!!!!!!!!!!!!!!!!!!!!!!!!!!