Tag Archive | Hypoparathyroidism

The Ups and the Downs

If 2020 were an object, it would be a pile of dog poop.   You would be hard pressed to find anyone who would say as a whole this year doesn’t suck the big one.    For some it sucks more than others and it doesn’t even take into account the pandemic.

2020 is also the year that one by one major races and events were cancelled.   Boston while shocking was not unexpected since it was in the beginning of the pandemic.   One by one other large events fell to the wayside.   Many of the larger fall events have been holding out hope.  NYRR just announced that they were cancelling the  New York City Marathon.   Not unexpected but still sad.   For those that were planning to run they are giving great choices for deferment which also unheard of from NYRR.    I believe they did the right thing both in canceling it and before most people started training.

This is the years for runners to decide why they run.   This is the year for runners to decide weather they run only for the bling or if they run to run.   Now don’t get me wrong…… I LOVE, LOVE, LOVE, LOVE my bling.

I get a lot out of running besides bling, but when you are not training for anything it does get easy not to stay motivated.   Not to get out the door.   Not to go for longer runs.   Not to push yourself.    One of the reasons, I have been doing the NJ Virtual Boardwalk challenge.    21 days left and more miles than I would like, but I will get it done.

So while 2020 has sucked and seems like is on the path to sucking till the bitter end, we need to regroup, refocus, and adjust.

What if we took this time as a gift.    What if we viewed everything not through the lenses of what has been taken from us, but what has been given.   What if instead of thinking of all we are missing, we embrace all the things that we have.

Time

I currently have no part time job.   I have no practices to run my son to.   I have no this or that to attend, but instead of thinking about all that I’m missing what if I view this time as a gift.

I now have the time to practice yoga.

I now have the time to go for runs/walks.    I have even started walking the dog with my oldest son just about every night.    This is a gift.

Races

I am missing the thrill of big events.   The fun of small events.   Missing my running crew.   Missing training (really).   Missing a lot…. BUT…….    every since my surgery left me with Hypoparathyroidism, I have continued to push myself.   I’ve continued to train, race, and while I have cut back on number events I was doing, I still kept pushing.   Doing a marathon ever year since surgery in 2016 (actually every year now since 2014).     Now, I have no choice though but to stop chasing events because even though I was realistic about them, I still pushed myself.   FOR ME – instead of being upset that I can’t run NY again, what if I use this time to reconnect.   Not just with running, but the way I need to run.   Think about what works best for me as far as miles, pace, and calcium instead of chasing distances and time.

From January even before Covid, this year has had a lot of downs.   Lots of things have gone wrong.   Lots of drama.   Lots of things that I wouldn’t wish to happen to anyone.   But with each of these events, there has been an upside.   Now don’t get me wrong, I would love to have gotten to the upside without the rollercoaster ride but that isn’t how life works.   Sometimes you have to let go of the handles, put your hands in the air, scream as the roller coaster is racing down the tracks and just be happy when you pull into the end.   You can’t enjoy the highs without the lows.

So while many of us our in lows now, we have no choice except to enjoy the ride as much as we can.

So for now…..

I will continue to run.   I will continue to see if maybe I need to do more power walking especially in the heat instead of running.   If maybe, I just keep moving that is enough and for the next 21 days, I have to not skip a beat and apparently I am a streaker.

 

 

 

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This week I had my 6 month check up with my endocrinologist. Not surprising, my blood calcium level was low. The good news is that it is just below the low end of normal. Yeah me. The good part though is by maintaining this low level that my 24 hour urine calcium level was normal which is something I haven’t seen in 2 years. At my highest this level was more than double what it should be. So since my Natpara is gone, I bounce in the low blood calcium levels to protect my kidneys for the higher output levels. Go me.

All was good at the appointment. When I commented to my doctor that I was “happy” with levels to protect kidneys, she reminded me that we also have to worry that if we allow my blood calcium levels to get to low we have heart issues. Did you know that if your calcium is important for heart health. Such a balancing act that makes life so fun.
I am good about balancing these things. (seriously Mom… no worries). I am also very lucky that I’ve never had any issues with my kidneys or heart. I pay attention. I adjust. I pop pills all day and adjust as needed. As said before, I really think being a marathon runner prior to surgery helped me learn to tune into my body. All those long runs adjusting fuel, pace, and runs gave me an inside track on how to listen to my body with calcium levels.

I have a few running magnets on my car. I have one that says 50K. Sometimes I think that I should take it off as I only ran one, but it is a reminder of what I once could do and maybe one day will do again. It makes me proud and a little sad at the same time. At my “peak” I finished this event in 7 hours and seven minutes. Obviously, I did not run the entire time, but I did run enough to actually complete it. I’ve run a sub 2 half marathon and a 26:26 5K.

I am no longer at my peak. I’m no longer close to my peak. Today I struggle through 5 miles which used to me my normal run. I used to run every day in training. Teaching myself to run on tired legs. Now I have to pace myself as my legs are tired before I even start. I can’t run every day, but have been trying to walk at least a mile every day.  It sucks. And yes, I know, that it could be worse but  this is my pity party. I miss the “old” me and I when I was on Natpara I kind of felt like her.   Sometimes I get annoyed at my missed opportunities.   Blowing my 4:30 marathon because I didn’t pace myself.   Thinking I would get another shot at it.   I was wrong.

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When you have an invisible illness no matter what it is often times people think you are exaggerating, it’s all in your head, or think you are just complaining. It is easier for people to understand when they can see the toll an illness takes on a person, but often times people with invisible illnesses keep a lot to themselves. What is the point… You know what you need to do and you just handle it.

Al my life I’ve struggled and overcome the impossible. I’ve come back from the bottom and realized that in life you really only have two choices….. Keep moving forward or give up.

I’ve been wondering if it is time to give up running, but I get so much out of it that I think that is not a valid option. I’ve been lower before. I’ve crawled my way from the depths of depression where I realized that giving up is not an option. The truth of the matter is when you come back from that, you realize that your only option in life is to keep pushing forward one step at a time.

Today’s run was hard. The heat effects me. I felt tingles in the lips (low calcium). My legs were cramping. I thought about just walking home. I realized that most of my problem with running really is my ego. I can run fast in short bursts. I can’t run fast for the long haul. I need to readjust, refocus, and learn to pace again. If the truth is that running is worth pushing myself than I really need to push myself smarter. So with that, I added some calez (powdered calcium) to my water, cut myself some slack, and reassessed what I realistically want from running.

Unrealistically…. I still want that 25 minute 5K or that 4:30 marathon I was chasing that I will never get. Realistically, I just want to keep running. I need to let go of expectations, excuses, and ego……. easier said than done especially when I was on Natpara injections which made me feel like my old self for a bit.

I’ve been picked over. I’ve been picked last. I’ve been ignored. I’ve been on the outside looking in. I’ve been on bumpy roads in life….. And while none of these are good and no one wants these things to happen to them or anyone they love…… When you’ve been dealt these hands , they do make you stronger. I root for the underdog, because I’ve been the underdog. While not that now, I do know that if I can get through all the things that brought me to where I am today; I can get through this.

Luckily there are no races on the calendar. There is no training. There is just getting miles in and keeping myself moving. This year will give me time. To think of what goals I want when there are goals to be hand. To be smart. Most of all to just keep running…
Most of all no matter what….
To never give up.

 

And I know that some of you have heard this before and might hear it again.   I am only human and some days you move forward and some days you move backwards but as long as you have more forward moving days than backwards, you are doing ok.

Great Expectations

We all have expectations in life. Great expectations. We all have a vision of how we want our life to be. Expectations are good, but what happens when life doesn’t live up the vision of what we think it should be? This leads to disappoint and sand ness.

All those years ago, actually only 7, when I started on my fitness journey there was no expectations.    I didn’t know what my body could do.   I didn’t know what a good time for an event was.    Hell, I really didn’t know anything….. Except that I wanted to do something.     Because I was starting from zero, I put no expectations on myself.   I jokingly said that my only goal with my first ever race, Iron Girl Sprint Tri, was not to die.   To me that was enough of a goal and anything after that was a win.

There was no… I should hit this many miles. I should hit this pace. I should do this or that for training. I knew nothing, so I expected nothing.

When I ran my first ever half which I signed up for because I was running just to run with my MRTT (Mom’s Run This Town) Mama’s. I was running 8 miles and more just to run them. Then on one run one of the Mama’s, Janna, said, ” You should sign up for the Superhero Half. Your ready for it.”

So I did. I had no expectations. I just showed up for the car ride to the event. While in the car, the seasoned runners spoke of pacing, race strategy, fueling and such. When they asked me mine, I had none. My goal was to finish.

Thanks to Janna who took me under her wing, I finished in 2:09. She knew about pacing and she also knew that I could finish in under 2:10 and she got me there. I just ran when she made me run and had a fun time doing it.I further admit that I didn’t even know that 2:09 would be a good time for a half. To me it was just about running to run and having a good time.

Then something happened, I started putting expectations on my running.   I also became ” a serious” runner.    I learned of pacing, training strategy, and proper fueling and for a while I even had a kick ass coach.   And while I still enjoyed running, it lacked the simplicity of when I first started.  I put expectations on myself and I was able to live up to my expectations right up until I couldn’t which was right after my thyroid surgery left me with Hypoparthyroidism.   And even after I came to terms with that, I still put expectations on myself.   Expectations that I could no longer meet.

You know what? I’m done with expecations! I want to find the joy that I had when I first started running.    I want to stop overthinking, overanalyzing, and just find the joy in allowing my body to do what it can do.   No matter the pace.   No matter the distance. 

The thing that screws us up so much in life is not accepting what we have and being upset it’s not what we think it should be. Sometimes getting out of our own way is the best thing that you can do. Sometimes you have to make a conscience decision to let things go, to reassese, and just allow what is to be enough.

With this thought process, I had picked the Hal Higdon Novice 1 training plan for the NJ Half at Rutgers.   No, I admit, I am not a novice runner; but I want to be.   I want to run with no expectations.   I have been so focused on doing what I thought I should do that I was missing out on what I could do. I am going back to seeing what my body can do.   To discovering where I am today.   And while I may have had this thought in the last 3 years I really have not embraced it in my running.    I am now. 

You know what?….. I’ve been enjoying my 2 training runs so far.   I have just been running to run.   No expectations.   No watching the pace.   Just letting my body decide.   It’s been good.   The runs have felt good.    I have felt good and the bonus is that both runs had negative splits which will not be the expectation nor will it be.  

So I will be happy to run where I am today. Not where I was 3 years ago. Not where I think I should be. Not where other people are. Not about pace. Not about anything, but enjoying where I am at this point and that will be enough.

Looking on the Bright Side

Sorry I’ve been off the grid. January has been a month to say the least. The first full week of January my husband and I both came down with what we assume was the flu. Down and out for the count. This is where I was thankful that my kids are old enough and self sufficient enough (when need be) to take care of themselves. Then was getting back into the swing of my routine and catching back up.

In the spirit of catching up, I did manage to sign up for a Half Marathon in April on my actual birthday. I will be doing the NJ Half at Rutgers. It was either this one or the NYRR Shape, but since did that one years ago I thought maybe something different this time.

The deciding factor was time as it will be easier to get in and out of this one. Plus it’s not 2 loops of the hills in Central Park. I even got a friend to do it with me. Win. Win.

Then the month kept rolling along. Yesterday, I had the fun of getting a colonscopy. Have to say the prep worried me a little bit because I wasn’t sure how my calcium would be, but I took extra in prepping for the prep. I did get a little tingles during the second dose of my prep, but I added some calcium and was good to go. What surprised me is my calcium getting low last night well after the procedure. Tingles around lips. Tell tail Chvostek sign. Hypoparathyroidism is a strange beast. I took some extra calcium and thankfully bounced back by morning.

I will say all of these things did make for a great month as far as helping me with my weight loss goal. Not what I would recommend to jump start your diet, but 8 pounds is 8 pounds and I’m even more motivated because I’m 2 pounds away from a number I haven’t seen in a while. So I guess now I have to stick with the healthy eating thing!

And since I was feeling better today, I went out for my first half marathon training run. I decided to go back to the very beginning using the Hal Higdon Novice 1 training program. This program is designed for those who have never done a Half before, but since I’m going back to basics I thought this was a great way to start. Besides I haven’t done much since NYCM and the Half is in 12 weeks, so I think this is just where I need to be.

I’ve decided I’m going back to the very beginning. Like I did all those years ago when I first hit the pavement, I am claiming this once again as the year of me. This means that I will be focusing on taking time for myself, getting myself in shape, and just enjoying seeing what I can do. I surprised myself all those years ago and I think I just might do it again. Who knows! I surprised myself on todays run which I allowed myself to walk when I needed. I ended up with very pretty negative splits and was happy with myself. What more can a runner ask for?

How are you doing on your goals?

Challenge Accepted

During the month of December, I accepted a fun Facebook Challenge from a friend to post 10 days of running photos without explanation that had an impact on me or were important. Here are some of what I shared –

I loved this challenged and it reminded me that I used to be somewhat of a bad ass. It reminded me that I can, have, and want to again to hard things. It motivated and reminded me that before I started out, I couldn’t do any of the things that I did. I trained. I pushed myself. I didn’t give up. Most of all…. I tried.

I want to try again.

I will try again.

Most of all, I need to continue to remind myself that the best things in life aren’t easy. So I have been spending December baking cookies, eating cookies; but also plotting. Plotting how to stop feeling like a marshmallow and get back to feeling like I can do anything. Don’t get me wrong, my measurement of being a bad ass might be different than it used to be. That doesn’t make the feats any easier.

I’m putting out some BIG, BIG goals for me for 2020.

1. Loose 25 pounds

2. Run at least 1 event a month

3. Close my activity rings on my watch every day. This will ensure 30 minutes of exercise a day.

4. In the back of my mind, I’m pretty sure I want to run (if they will have me again) the NYCM again for Sandy Hook

These are lofty goals. This are hard goals. These goals will push me. Most of all these are not impossible goals even if as I write them they seem impossible.

I’m laying the ground work and plotting as I so often do. Another hypopara friend asked me to join her group to run the year 2020 challenge with some others. We will create a team and as a team, we will run 2020 miles. A challenge on your own sometimes falls to the wayside, but knowing that you are part of a team will keep you motivated. I’ve already registered for my first 5k on January 1rst.

I’ve already talked to a dietician to help me find a healthy way to loose the weight. When researching good diets for those with Hypopara, I realized that the one I used prior to becoming Hypopara might not be the best alternative now with the once again high urine calcium levels. Must protect the kidneys at all costs because being super vigilant has served me well. So having the help of a dietician will help not just with weight loss but overall health. She has also mentioned that there will be a January weight loss challenge that I can join. As mentioned above, it is easier to stay on track with others.

So as I continue to plot out my plans, I hope to share both the victories and pitfalls (hopefully not too many) with you.

What are you 2020 goals?

One Month

A month ago I ran the NYC Marathon. Ok, a month ago I power walked the NYC Marathon. Since then….. Not so much. And when I say not so much, I really mean nothing. No cross training. No biking. No nothing.

At first, I said that it was because I needed to rehab my feet which is truthful. They need to get it together. Although a month of rest probably was just what they needed to deal with the Plantar Fasciitis. Then I believe I’m also dealing with Morton’s Neuroma probably aggravated from the power walking which has a completely different landing than running. So rest has been good.

Right up until it becomes more than rest.

So much in life is out of our control. Sometimes it feels like nothing is in our control and no matter how hard we try, we are running in the wind. After a while it is easy to give up trying because what’s the point. It’s easy to use a crutch even a valid crutch to blame everything on until you just stop trying.

I’ve been thinking about the Decade Challenge. I’m sure you’ve seen it on Facebook. The compare where were you then compared to now. I find it somewhat depressing. I jumped in 2013 training for my first ever event… A Sprint Triathlon. You know because why start small and it would be a great way to get back to being healthier. That was just the beginning as you know.

I did get healthier. Probably the fittest that I had ever been. Up until being healthy wasn’t in my control. With the surgery leaving me with Hypothyroidism (expected) and Hypoparathyroidism (very unexpected), I gained 20 pounds. I lost a lot of my steam. I deal with aches, pains, memory issues, and just generally feeling sucky on a daily basis. I persevered and pushed on moving while at a slower pace still moving.

Then there was the beautiful Natapara (my Hypopara peeps understand) which brought me back to normalcy. I was living the life again until the rug was pulled out. Yeah, I know you’ve heard this before. Without the Natpara I had decisions to make. Is it smart to push my body to the limits? If I want to continue to run, I have to get the feet issues under control which also requires addressing the weight issue. For me, with the issues I’ve had with my feet the extra weight is a problem. For me, I’m also not happy with where I am. No, I will never be a size 6 but I need to get back to where I my jeans fit.

Part of having so much in your life out of your control is that it is easier to not face the truth. The truth that while there is so much out of control that there is much in your control. Not to say that the things in your control are easy to face, deal with, or tackle but they are still there. Sometimes the hardest thing is deciding what to do and after that things fall into place. This is true for so many things in our lives. The holding pattern is what keeps us from moving forward. The fear of what if I can’t do it? What if it’s the wrong decision? What if….?????? What if……..??????? What if…..???????? It’s the what if’s in life that hold you down and the fear of failure that keep you from trying.

It is my fear of failure that has kept me from getting back on the horse with my weight. Hubby and I tried in January. He lost 50 pounds. I lost 4 and I’m not sure but I think I may have found them. While he does have it easier by virtue of just being a man. No I’m not being sexist…… My doctor has even used the phrase, “A woman your age with hormone blah, blah, blah….” So there’s that. Than the lack of thyroid. Then the aches, pains, and exhaustion that comes with Hypopara. Yup. Out of my control. What is in my control is what I put in my mouth. How I decide to use my energy and give myself on the days where there is none.

This probably is a good time to start too because it will keep me in check during the holiday season. And while I do have a limited amount of energy during the day, I can find time to do something for myself with it while doing what needs to be done. Simple things that I actually enjoy. Like this morning dusting off my juicer and having a yummy clean eating juice for breakfast instead of processed food. My body needs less processed foods and when I’m eating right, I feel better. I think that’s true for most of us.

I don’t expect this to be easy. I hope that I don’t give up. Even if it takes longer than I want….. Even if it seems impossible…… I know that what I put into my body is equally as important if not more than what the scale says. Most of all I hope to once again realize that I can do hard stuff even if it seems much harder now than it used to be.

So with all of that I’m already thinking of goals for 2020 and ways to actually reach them. Because as the saying goes, hindsight is 2020 (yeah mom joke there… my apologies, but that’s just me).

Can I Do That?

Sometimes there are bigger questions we must ask ourselves. It is not….

Can I do that?

but

Should I do that?

These are very different questions that will bring about very different answers for various reasons. They will often bring very different results too. Often what we should do does not give us the instant gratification we want. It does not bring the smug satisfaction of victory, speed, or getting the last word. It might feel safe. It might feel like the easy way out, but often what we should do versus what we can do is so much harder.

Can I eat that cupcake? Most certainly and it will be super yummy and delicious.

Should I eat that cupcake? No because I really don’t need the empty calories and I might feel guilty about it.

Can I respond sarcastically to that person who is being an ass to me? You bet I can and I will get so much satisfaction out of it too.

Should I respond? Nope, because in the long run it will only create more drama and I know the smart thing is just to walk away with my head held high.

There are so many of these sometimes small, sometimes big questions that come up on a daily basis. Our gut wants the instant gratification that comes with the why not attitude and in some cases it really doesn’t matter. Sometimes it matters. It matters to our piece of mind, our waistline, our health and a whole host of things.

This is where I am now. There might be some people who think I’m being overdramatic with coming off the daily injection of Natpara. They would be wrong. In my Natpara support group, someone is tracking hospital visits. As of today there are 62 who went to the emergency room. 30 admitted to the hospital and 7 of those went to ICU. This is no joke and I know that I am one of the lucky ones whose transition is going ok but if it’s one thing people in Hypopara community know things turn on a dime.

So with this thought in mind, I have been asking myself…..

Can I run faster and longer in training? The answer is probably (depending on the day)…. Yes because aerobically I have the base as I’ve been training. By pushing myself while transitioning off medicine and readjusting I will need to face the consequences….. muscle cramps, tingles, and if I push too hard a calcium crash.

The real question is….. Should I keep trying to run faster and longer in training? The answer is No. Again, I’m not a fast runner anyway. I’ve got nothing to prove and I really would like to get to both NYC Marathon feeling good and cross the finish line without needing to suck down packets of calcium or worse.

So the lesson that is always hard to learn is that while you can do something, it is not always prudent to do it. I proved that with today’s run. It helped that the weather was perfect. I have my low mileage plan and went out to do 6 miles. I went into it trying to keep my pace around 11:30 which is what my Garmin show. Nike is faster, but I’m going by Garmin which shows average pace of 11:37. Not sure why the discrepancy with Nike, but doesn’t really matter.

At these slower paces, I could do it. Yes, I walked some but not as much as I thought I would. I kept telling myself to slow down which is probably not what most runners tell themselves. I’m not looking to run fast. I’m looking to run long. Run far. Mostly I’m looking to not want to fall over when I cross the finish line.

So this may be another 6 plus hour marathon this go around. Oh well. Better to know what I should do than pretend to attempt something that for right now I can’t do.

Swimming with No Life Guard

The transition off of Natpara is about what I had expected, but not nearly as easy as I had hoped.   A lot of it is just the old familiar crap but with an overwhelming sense of fear.   Now some may say this fear is misplaced and it’s no big deal, but they should try living in the shoes of someone with Hypoparathyroidism.    Fear may just be what keeps so many of us with stable levels because we are so aware to any changes.   A tingle hear, numbness there, pain here, racing heart there.     These things make us pay attention.   Adjust.   Wonder and keep going.

You see it’s all a guessing game.   Unless you are someone who has easy access to labs which is no one, you spend your day self monitoring. While there are obviously many symptoms that are different with high and low calcium levels, it is not always easy to tell. There are many overlapping symptoms too.   That just ads to the challenge and fun of the game of managing it all especially during transition.    Do I need to ad more calcium?   Did I ad too much calcium?    Is that just a normal numbness because I was sitting too long?    Did I have brain fog just because I’m getting older.    It’s all so fun and yet not fun at all.

I will say that amongst my Hypopara groups, one of the biggest stressers right now is the fear of the unknown and feeling like you are on your own.   Even those of us with very knowledgable doctors feel this way.  

I’ll be honest I had already been thinking about going back to my local Endo who I currently see for my thyroid levels but was thinking of having her handle the Hypopara stuff too.   She is smart and while not the expert that my specialized doctor is, she is accessible in a way that the other one is not.   Plus I’ve felt for a while now that if there were any issues, she is local and I would be able to easily get to her.  The flip side is my expert doctor specializes in Hypopara issues, understands it and all the quirks. Plus she is super nice.   Her level of understanding of this disorder can not be disputed. This is why I’ve been going back and forth on what to do and never made any changes because things were stable and you never rock a stable boat.

Well the boat is rocking now.    Here’s the thing…. Everyone wants the best. It’s normal, but sometimes the best isn’t always what you think it is or what you need. Without a doubt my expert doctor is extremely well versed in all Hypopara issues. She understands it in a way that most Endos don’t. She is caring. She is knowledgable and she gets it. On the flip side, her office and her are not always readily accessible.   Labs take time. And while I do have her cell phone number in case of emergency; if there is an emergency she not here.

I currently feel like I am swimming in shark infested water without a lifeguard. I know the sharks are out there, but I don’t know if they are going to strike and if they do; I’m not sure if there is anyone who will be there to blow the whistle to help me.

I already have an appointment scheduled next month with the local Endo for thyroid stuff who I have messaged about coming off Natpara, but rightly so she feels that other doctor should continue to handle the transition. I was kind of hoping that she would take the co-lead but I’m thinking due to various valid reasons that doesn’t work so well. In a perfect world she could order the labs which she can get quickly and confer with expert. It is not a perfect world.

So I’m still treading water. I feel the effects of the low calcium. I’m taking the meds. I’m feeling the hypopara symptoms rear their ugly head. I’m plugging away. I’m being cautious. I’m plotting. I’m planning. Believe it or not I’m still training….. Although carefully, cautiously, smartly and not like I was prior to coming off the meds. I will get to the finish line of NY, but to do that I need to get this calcium stuff under control.

So with that I will be stalking the lab portal to see results of this mornings blood work. I will make adjustments. I will just keep going. That’s the only choice any of us have.

Be Positive

I’m a pretty positive person. I usually take a wait and see approach to life. Usually don’t focus on the negative. That being said, life is messy and complicated and as much as we want to you can’t always post about rainbows and puppy dogs.

I see people on social media who post nothing but positive things. Even going so far as to apologize if something is miscontrud as negative. I am not judging them as that is their choice, but to me it’s not a real choice as life is not all good or all bad. Pretending otherwise is just that pretending.

Sometimes people are crappy. Sometimes XYZ is Crappy. Sometimes life is crappy. Sometimes you don’t want to put on a happy face and sometimes your just not feeling it. That’s life unless your Mr Rogers. It’s ok to get mad. It’s ok to express frustration, disappointment, and even be what might be considered negative. That’s life as long as you don’t just focus on the negative, that’s ok. It’s a balance.

Life has it’s ups. Life has it’s downs. In order to appreciate the ups, you must acknowledge the downs. Acknowledging the downs does not mean that suddenly you are going to be negative Nelly. It just means you are acknowledging that life is complicated and we don’t live Stepford Lives. I can appreciate the good, while acknowledging the suck.

So right now, I still feel like I’m in a holding pattern. Counting the days till the magic juice runs dry. That is 4. Part of me doesn’t like the holding pattern I’m in. Part of me is grateful for it as it has given me time to prepare….. talk to my doctor, order my meds, plan. But now I’ve done all these things, so now it’s just enjoy these 4 days and worry about day 5.

I’m also angry because I accepted the new normal of having to inject myself every day and take just a few calcium supplements a day. I’m angry because I thought this was going to last more than the 5 months and I should have started sooner. I’m angry because of the lack of information on how long this will take and when the medicine may be available again. I’m angry because I felt like I had my life back.

I’m also feeling a little defeated. Finally start getting things together and now this. And again, I know it could be worse and I’ve been lucky Some people might also think I’m being dramatic. Those people would be wrong and really don’t know the truth of this disorder, my life, or what I do to make things look easy. That being said, you would never say to a diabetic, “Well you’ve only a little diabetics.” Yes, I’m lucky in my symptoms. I’m lucky that I’ve been able to do so much. I’m lucky that my schedule will allow be self care as needed, but I still have Hypopara with all that comes with that.

I’m also nervous and these next 4 days I will probably see more Hypopara stories to make me slightly more. As I said before coming off the Natpara is no joke. In my Hypopara support group, someone tracked that there are already 14 who have had to go to ER with 7 being admitted. Again, don’t know what will happen, but it is a little nerve racking. I, honestly, don’t expect that to happen to me because I’ve never had to in the past. I’m hoping for a smooth transition, but it’s always in the back of your mind. If there is one thing Hypopara people spend a lot of time worrying about is their calcium levels, symptoms, and how to handle it all.

Here’s the crux of it too…….. I’ve got about 7 more weeks till the NYC Marathon. Training for a marathon is no joke under any circumstances. I’ve trained before without Natpara, but I use the word train loosely. I’ve trained prior to being Hypopara. I will admit that there comes a point in every training cycle where it kind of sucks, but you know you’ve got to do it. I can do it again. That being said, I’m going to be doing the dance of adjusting my meds while finishing my training. And did I ever mention that sweat and exercise effect your calcium levels. I’m sure I mentioned it. Luckily, I am usually in tune to my symptoms, have a doctor I can text if symptomatic, and am pretty good about keeping my levels. All while working and taking care of my family. Hmmm.

Lastly, I’ve still got $800 to raise for Sandy Hook Promise in these next few weeks while doing everything else.

Easy Peasy Lemon Squeezy.

So while I’m being super Negative Nelly that is also not the true story. Yes, all of these feelings, worries, thoughts are valid but there is another side to the coin. I know that I am lucky. I know that it will work out. I’m optimistic that things will go smoothly. That levels will remain stable and I will just keep on keeping on.

You can recognize the negative while embracing the positive. I always say….. Hope for the Best. Prepare for the worst. Most of all accept it all.

I’m Not Unpacking

You already know the whole Natpara thing has thrown me for a loop. It’s to be expected, but I’ve got literally a week of it left so I might as well make the best of it. It’s hard though when you see posts of people in your hypopara support groups already suffering with the effects of coming off of it and some already in the ER. It’s no joke.

What I keep thinking of though is that prior to Natpara I was lucky enough not to have visited an ER. So chances are pretty good that I won’t now either. At least that’s what I keep telling myself because you just never know because now it’s not just the hypopara but body adjusting to not having Natpara. I’m hopefully optimistic especially because I am also lucky enough to have a doctor not just well versed in Hypopara but also in Natpara. I trust her judgement and the instructions she gives to make this as smooth as possible. It will be a balancing act. Not too low. Not too high which is just as bad. We are looking for just right. Fingers crossed.

So yeah, I admit that I’m nervous. I think that I might be a fool if I wasn’t. But since the medicine is no longer available, I’ve got no choice expect to face it head on with as positive an outlook as I can.

Now Lastly I will admit that I’ve also been thinking about how NYC Marathon is in 8 weeks. Training has been going good in my opinion. I’ve been for the most part following my plan. I’ve been getting out the door. Doing what needs to be done to be able to cover the distance. I have not been concerned with paces as that has never been part of the goal. That being said paces have been better than I have expected. Part of me was starting to think that I might actually have a 5:15-5:30 marathon in me.

Well that’s out the door.

I have been experiencing a little tiny pity party these last few day. Not getting in one run since the news came out. Part of me is like…. why bother? A What will it matter pity party.

So it’s time to dust off the stink of the pity party. The Party is over and I refuse to unpack here, because I don’t know what is coming anyway. Besides I was never doing this marathon for me, but for Sandy Hook Promise anyway. So be what may, I will do what I can. At any pace that I can. Smart and safe as I can (don’t worry Mom). I will do this any way that I can, but I will do it.

So with that being said…. It’s time to run again.

I