Tag Archive | natpara

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…

The Load is Heavy

Mar28

This post is for my Hypopara friends……

For those of us who have been waiting and waiting and waiting….. and yet again waiting for them to resolve the Natpara issue, this last week was a kick in the gut.

For those of you who have never heard of Natapara, I will give you a very brief unscientific explanation. For those of us who live with Hyopara (Hyparathyroidism), it a nutshell it means our parathyroid glands do not work or work properly. Never heard of a parathyroid? Well that’s because it is one of those things that the body usually never has a problem with. Most (not all) of us came to the Hypopara world due to a problem with thyroid surgery where the parathyroid glands (there are 4) were damaged. At least that’s how I got here. Your parathyroid glands produce a hormone that is responsible for helping your body regulate calcium levels. Not a big deal you think, until you look at this chart.

Anywho……

For a brief moment, all of this was secondary because I got to be on Natpara, a daily injection of the synthetic parathyroid hormone. I was on it for a blip before it got recalled. My body worked the way it was supposed to work without a barrage of pills, self checks and symptoms. I also no longer worried about my kidneys since all levels than were in normal range. Then for reasons that really don’t make sense, this option was taken away. When I say doesn’t make sense it is because it is still available in others parts of the world, just not in the US. So back to daily routine.

Whatever……

As the saying though goes though….. Just because I carry it well does not mean the load is not heavy. It is heavy. Sometimes you get so used to carrying the heavy load that you forget it is there, but it is always there. You stop really speaking about it because you just do what you need to do and even those in your circle don’t see the struggles. Always lurking. Waiting to remind you that it is there. It is those moments that are frustrating. I also know that I am lucky because even with my Hypoparthyrioidism I am able to accomplish and do so much.

But for now, I know that many in the Hypopara community have no choice but to keep carrying our heavy load because we all got notified that Natpara is not coming back. It makes no sense to know that there is something out there that will take away the symptoms, help to protect kidneys because we were no longer taking high doses of calcitrol and calcium, where your face doesn’t start to tingle telling you that your calcium is dropping (that’s what mine does but everyone is different), your feet uncontrollable cramp up, or have muscle spasms in legs. Just sitting here waiting for the other shoe to drop as you deal with the life of hypopara……… because in the end

What choice do we have

especially when the only viable one was taken from us.

Jun19

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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.

Rolling With It

Sep29

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?

Sep24

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?

Sep23

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

Sep18

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

Sep12

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

Sep9

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

Sep8

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…….