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Rest, Recover, Repeat?

When running a marathon, so many random thoughts will pop into your mind. Some are fleeting. Some stick with you for a few miles. One that usually pops into my head is “I’m NEVER doing this again.”

Exhibits A, B, C

2014 – First marathon, Philly – This was supposed to be a one and done. I swore I just wanted to cross one marathon finish line and then I could call it a day.

2015 Marine Corps – I put in for lottery and as a fluke got in. I literally was dropping some F bombs to my sister who ran on the course with me at the end. I told her how stupid marathons were. How ridiculous it was that people wasted their time coming to watch runners (mind you she flew in from California). Lastly, I swore NEVER again (after NY because I’d already done the 9+1 for it)

2016 -NYCM – This was it. My first NYCM and was going to be my only. I mean how can you not run NY if your as close to the city as me. I even put off my surgery for my thyroid, so that I could run it. This was only marathon that I hit the wall because I ran the first half like there was not a second half. I was done and had my NYCM medal so what more did I need. NO more!

2017 – I put in for the Chicago marathon while still recovering from getting my thyroid out and dealing with learning to live Hypopara. This was flipping my finger to all that I was dealing with and I just needed to run one as a hypopara to show I could do it. It was not a pretty race as it was hot, but it is my fastest post surgery marathon. I was done. I proved my point. NO more.

2018 – I felt like there were signs that I should sign up to run NYCM as charity runner for Sandy Hook Promise. The signs were everywhere, but if I didn’t get picked at least I tried. Well, damn, they released that I really believe in their cause and picked me. So, yes, I was running with a purpose and I would do what I could to support Sandy Hook Promise; but I was only doing it one time. Until I did it again.

2019 NYCM Sandy Hook Promise Runner

During my run, I thought about that maybe my body just isn’t cut out to be a marathon runner. Maybe I should just stick to running shorter distances. That running 26.2 is just not for me. I could still support my team from the sidelines. I could still spread the message of Sandy Hook Promise. I just needed to give my body a rest because running marathons weren’t for me and I should focus my energy elsewhere.

Then I crossed the finish line.

I still felt that way. I still wondered if maybe this is too much for my body. Wondering if I needed to spend time on recovery. Getting my feet under control. Dealing with the aches and pains. Knowing that maybe worrying about my calcium crashing while running is just not worth it.

Then I went home. I read all the messages from my Facebook live videos, my running group, my friends and the chats with team members. And while I do need to spend time on healing my body – dealing with the tight calves, dealing with the feet, dealing with the pain that still lingers on the side of my calf and knowing that if I really want to run stronger/better/easier on feet that I also need to loose 20 pounds. Like seriously 20 pounds.

Then I thought….. It’s getting to the holiday season. There is no way that is going to happen. Then I realized that training would not start until Spring. Then I thought about how much I love being part of the Sandy Hook Promise Team, how some friends will be running NY next year, and that it might motivate me to keep going.

Then I thought…… Your crazy……

Not wrong.

Not right.

Then I thought about all the work in raising the minimum of $3,0000 to be part of their team. Then I thought of what I could do differently next year. The beauty is that I don’t need to make any decisions now or in the near future. For now my focus is recovery.

So I will continue to roll. I need to get to acupuncture. I need to do the things that I know I should do because chances are pretty good…….. that if you give the girl a medal, she’s going to want another one. Besides I’m pretty much on a roll now.

Lucky # 7

Tomorrow I will be stepping up the start line for my seventh marathon. Hopefully it will by the end of the day I can say that I have finished all 7. We all know that there isn’t much that is going to stop me from getting there. No matter what I wouldn’t trade it for anything.

With each marathon, I’ve learned something. Learned how to push myself. Learned that I am stronger than I realize. Learned that no matter what there is always a little more in the tank.

My first marathon, Philly, was a fluke. That year, I had trained and completed the Runner’s World Hat Trick (5k, 10k, and Half marathon all in two days). When it was over a friend nudged me to sign up for Philly the following month. One 20 mile training run later, I was in. I finished in 4:46:20. This is before I knew anything about running, so I do see humor in that I didn’t push for the 4:45 time..

Then over the next few years would run a marathon a year. For my second marathon, Marine Corps, I trained with a coach. I finished in 4:38:14. This is my current and more than likely my PR for marathon finish times. I should have PR’d my first New York as I was well trained for it, but went out way too fast not following the plan. This is a mistake I will not make tomorrow.

Two weeks after that first New York Marathon was my thyroid surgery leaving me not just without my thyroid, but also working parathyroid glands. I was determined not to let being Hypopara take away my running and the Chicago Marathon was supposed to be my one hypopara marathon and done. A way to snub my nose at it. I learned a lot in Chicago. I learned that for me the set run/walk plan doesn’t work for me. I learned that my body does NOT like running in the heat as it was very hot that year. Most of all, I learned that I can just keep going. All things being considered, an hour slower is pretty awesome.

But then, then it became about something more. Last year when I got picked to be part of the Sandy Hook Promise Team, I could not have been any more honored. I still remember sitting in a Toys R Us parking lot talking on the phone with a friend in 2013, a year after the shooting in Sandy Hook. She could not understand my pain over the horrific shooting when I was not personally involved, but I was involved. I’m a mother, that year my youngest son was also in Kindergarten. I took it very personally because this tragedy as we’ve learned over the years can happen anywhere. She couldn’t understand my pain and told me that I needed to do something as I wasn’t “getting over it.” I didn’t want to get over it, I wanted to do something. So here we are.

Although, even before last year I was involved. I did what I could, but I wanted to do more. This is my more. I can and do share the message of inclusion, stopping gun violence, and making a change. My personal friends know this to be true. I remember one year on Wear Orange for Gun Safety another friend that I ran into at a baseball game while I was wearing my orange shirt saying to me, “Isn’t every day Wear Orange day for you?” She meant this is the nicest way possible because she knows I am always spreading the message.

So here I am getting ready to run my second marathon as part of Team Sandy Hook Promise. At a lunch today it was said, “You weren’t just a number coming into Sandy Hook Promise. You were selected. Your stories and passion are what got you here……. We picked you from the heart.” So I run knowing that this isn’t about me. This is my way to not just share the Sandy Hook Promise message which I do, but about helping to support an organization that is doing so much good. Last year was my slowest marathon to date at 6:10:13; but my most memorable and favorite one.

I am honored. It is more than words. It is a truthful statement.

My goal. My only goal tomorrow is to wear my Sandy Hook Promise shirt with pride. Ok, I may also have a goal of 5:45 time but that is secondary. I know it won’t be easy, but nothing in life worthwhile is a walk in the park. I will get that walk in the park crossing the finish line. I’ve learned a lot about running since my first marathon. I’ve learned a lot about what my body can do even after becoming Hypopara. I will do what it takes knowing that I will have not just the support of family and friends, but the Sandy Hook Promise community.

This picture was taken last year during the marathon. I have taken MANY race day photos. I have NEVER taken one like this with the sun shining down on me. I look at this as a sign that I was not alone. So as I run these 26 miles, I know that the saying 26 miles for 26 angels is more than a catch phrase. It is real.

It’s go time.

Run Where You Are

As a runner, often you know that you need to push through things. You need to push your body to the limit knowing that it can go one step further. This is what we train for. This is what we know. This is what gets us to the finish line….. If…….and only if……. if we listen to our body.

As a runner, we also know that the starting line is our biggest challenge. You don’t just get there but train to get to the start line. Your excited. Your filled with energy. The gun goes off and your feet begin to fly. When running a short race, it is usually ok to fly like the wind. Let your feet move because if trained, the distance will be no issue. This is not the same for a marathon which is a different animal.

You must run where you are and not where you want to be. The gun goes off, you must pace yourself. There is no going out too fast and thinking you can bank time for the end. There is no pushing hard in the beginning only to push harder in the end. The truth of the matter is if you go out too fast, too hard; you will crash and burn. You may hold it together to finish, but usually it is not pretty and any time you think you banked in the beginning is lost at the end.

You ask how do I know this? Well I’ve been there. Done that. My first NYC Marathon before becoming Hypopara, I had a coach. I was trained for a 4:30 marathon. I blew it. I ran the first half of the marathon like there wasn’t a second half and it shows. I came off the first bridge and I took off like a bat out of Hell hitting paces that I had no business hitting that early in the race. Somehow I thought it would all work out until it didn’t.

Case in point…

I held it together….. Barely.

The beauty of having made this mistake then is that now I can use it as a learning experience of what not to do. Even more so now, I need to get out of my own way and be smart. I have to run where I am today and not where I want to be which is back to 2016 pre hypopara. I know…. Boo hoo me, I can’t hit these faster paces. But in my mind, I still think that I can. Which is the problem. My body has other ideas.

Here’s the thing too. I know that if I maintain a pace between 11:30 and 12:00 in the beginning, that not only will I have a better day but my body will cooperate. As my cohort told me the other day and I will paraphrase as it was a long wonderful, much needed conversation, “you’ve got a lot going on right now. You need to listen to your body because even though every runner pushes themselves to the limit. If you push too far, your might not be able to finish because of your medical stuff.”

And that right there is the truth of it. I was able to bounce back in 2016, because I didn’t need to worry about anything else except getting to the finish line. I knew my body would be able to do it and I knew that I could push it without fear. Ehhh, not so much now. I know that I can still push myself, but I also know that there is more to think about. I also know that I can push on shorter runs than longer ones.

So I need to get out of my own head. I need to pay attention to when to add not just fuel but calcium. I need to know that my illness is not in my head, but a real thing in my body and I need to be mindful of it. I need to realize that going out “slow” is smart. I need to tap into the knowledge that I have from doing this race in the past and use that so that I can run a smart race. I know even with the hiccups at the end with my feet, that I am ready for this race.

I just need to run the race and the pace that I should run. I need to run where I am today and not yesterday. I need to run so that there is reserve in the tank to smile as I cross the finish line. I need to fully embrace the mantra, your race, your pace and know it to be true. Most of all, I need to (and am) grateful that I am able to do this no matter how hard it will be.

I am blessed.

I am trained.

I am ready.

It won’t be easy, but it will be worth it.

Rolling With It

Sometimes it feels like life is a ball of yarn that you must keep re-rolling because as time passes it unwinds and gets messy.   As it unwinds, it frays and the dead ends need to be cut off before rewrapping (sorry to my knitters if this is bad analogy).     If you don’t continue to wrap it back up, eventually your yarn will become knotted and unusable. So it’s best to deal with the mess before it’s too late. That’s where I’m at.

Waking up in the morning feeling like you’ve already come back from your run. Needing to be stretched and rolled does not make lacing up your running shoes quick or easy.    That doesn’t make it less necessary.

A mile and a half in and already tingles in the face.    Still working on determining when to take my Calcitriol and calcium because it’s obviously not enough time before I hit the pavement.   Race morning that should not be a problem since I won’t be starting till the 11-ish or later time frame.   I’ve got to work this out and also get morning stomach issues under control.

I feel like I was given hope only to have it taken away.   One of the reasons that I signed up for NYC Marathon as Sandy Hook Promise Runner was because I knew that I was going on Natpara.  Yes, I believe in their cause and am proud to be a runner for them, but I would have supported from the sidelines.    I knew the training would be different than the last year without it.    I knew how hard, frustrating, and exhausting it was without that PTH hormone and I didn’t want to do it all over again.    Now I had no choice to do it all over again, but now in a matter of weeks and not months.

I wonder if I have enough time to get my body used to running without Natpara at the distance I need to be running.   Yes, I’ve done it without Natpara in the past.   The big difference is that I did it from the start.   I had the time to adjust as the weeks went by.   Adjusting and learning what my body needed, when to add calcium, and building up.   Now instead of months to figure this out, I’ve got weeks to get my body and my mind on board.   They are still adjusting.   It’s harder than it should be both mentally and physically.   Knowing that does not make it easier.

Yes, I’ve got the base.   I can look on the bright side and know that for most of the training cycle that I had what I needed and could get the runs in.   I was even running at a pace that I was happy with again.   I didn’t think it would be my marathon pace, but I was doing alright.   Now in these next few weeks as I’m still adjusting my meds, I have to do what I have to do.

What I have to do is train where I am at today.   The bottom line is…. What choice do I have because I’m not quitting.   That is not an option.    To be totally honest with myself is that there is really not much that is going to keep me from the start line.   So with that said I better buckle up and go in trained the best that I can and know that it is going to be a bumpy ride.

I’m going into this marathon trained not as I should be, but as I can be.   It will be enough.   It has to be enough.   There is no other option

Doubt is the killer of all dreams……

And while this above statement is true, there comes a point where you have to face what the doubts are telling you   Running without Natpara, the PTH hormone, and dealing with that loss.  Knowing that I have to adjust expectations, training, and goals. Wondering if I will have what I need to get to the finish line.   Knowing that there isn’t much that will keep me from it either.

Training will be what it will be.   If your looking for tips on how to train for a marathon, this isn’t it.   But having already done 6 marathons, I am comfortable saying that I know I can adjust.   Maybe I walk more that I should although who determines how much “should” is.   I will do what I can and no more.

Who knows maybe I will surprise myself.

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.

Take 5, or is it 6 or 7?

Life is about transformation.

Metamorphosis

Changing from one stage to the next. Often we get comfortable in one stage and don’t like the thought of change. Most often the metamorphosis is not up to us and will happen whether we like it or not. Change is hard. Change is often unexpected. Change is inevitable.

The thing about change though is that often we are not ready for it. We have reached a level of comfort and we want to stay in the comfort zone. This does not mean that the comfort zone is all that comfortable, but we are used to it. We know it. We accept it. We can deal with the known because the unknown is frightening.

Surprise.

Time to move out of your comfy zone. You can not stop a change any more than the caterpillar can stay in it’s cocoon forever. It needs to break free and let the sun shine on it’s wings and fly. If it does not emerge from it’s cocoon it will wither and die.

So here I am. Now 5 Weeks till NYC Marathon getting ready to figure it all out again. I’ve been thinking this last week about my training. I’ve trained for marathons healthy. I’ve trained for marathons with hypoparathyroidism without Natpara. I’ve been training with hypoparathyroidism with Natpara which let me tell you is soooooo much nicer. Now 5 weeks till NYC Marathon I’m getting ready to figure it all out again.

Last year when I trained, I was able to build my miles up learning when I needed to ad more calcium, what would effect my levels, and how I needed to adjust my training. I was able to build up the miles slowly and plan accordingly. This training cycle with Natpara has been different as I have not been so symptomatic and it was going nicely. Now as my body adjusts to being off the Natpara even without the added stress of running, I need to figure out how much calcium to take, when to take it and also how much Calcitriol and supplements to take to find a balance. Add training for NY to the mix and it is a little stressful. My body and even mentally I’m trying to work it all out. Instead of having the summer to figure it out and get it together, I literally have weeks.

It can be done. It will be done. I was scrambling. Doubting. Wondering how to pull it all together. A good friend shared with me an 8 week marathon training plan with low millage. I’ve been putting in the miles. I have the base. I can do this. It is not designed for someone who is looking to race, PR, or push. It is designed for someone like me who just wants to get to the finish line. So I’m jumping in with 5 weeks to go and let this next transformation be what it will be.

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

Behind the Curtain

We all like to put our best foot forward. We all like to have a view of ourselves we present to the outside world. Sometimes the presentation is real and sometimes it’s not. I admit that if you randomly stop by my house, often you will find it in chaos, but if I know you are coming it will have the presentation of being in order. This is why when some people scroll through Facebook, they may get depressed because everyone looks like they have a perfect life, but if you look behind the curtain….

That perfect family vacation picture a friend posted…. You might not see all the yelling it took to get everyone to stand still and smile.

That perfect dinner a friend posted….. You might not see the night that dinner was thrown out and they had to order out

That perfect marriage your friend always boasts about….. Well who knows.

Perfect lives are never perfect.

A Hypopara friend said this about me in our support group the other day…

I have to say this as someone who has followed your journey, I am so impressed by you! You recently started Natpara and was doing better on your runs and now things are changing again (hopefully temporarily,) the way you are handling it all (don’t know if you feel the same on the inside,) but on the outside it has been source of strength for me. *Hugs* my friend!

Like everyone in our small Hypopara community on Natpara, this came out of left field. We were all rocked. The morning before the news was released I literally uttered the words about Natpara, “I can’t go back.”

Well now I have no choice. Maybe it’s temporary. Maybe it’s not, but either way; It is what it is. What it is is sucky. For some it may lead to hospital stays, Calcuim crashes, and a host of things. I admit that I am angry. I am frustrated by lack of info. I am scared. Survey any Hypopara patient and I would bet that our number one fear is Calcuim crash. Second is probably Kidney damage.

I further admit that I am lucky. Even before starting Natpara I was able to do more than so many could. Don’t get me wrong it took it’s toll and I often told my family that I made it look easy to them; but it was pretty damn hard to get through the day. I fear going back to feeling that way. I fear the side effects of low calcium, hurting my kidneys, and not feeling like me again.

But these are the breaks. These are the cards being dealt me today (although I do have one week of Natpara). I learned a long, long, long time ago that in life there is much out of our control. Yes, you can get mad. You can get frustrated. You can be sad. What you can’t do is not deal with the reality that is before you. When you don’t that is when you will have problems.

So this next week, I will continue to touch base with my doctor. I will stock up on my meds. I will figure out how and when to take 2,500 mg of Calcuim and 100 mg Calcitrol during the day because your body can only absorb 500 mg at a time. Plus I can’t take it near my thyroid meds which I was already having issues with. I will plan. I will plot. I will fill up my pill box and I will adjust.

Meanwhile I still am planning to run a marathon. That will be for tomorrow’s post…….