Category Archives: PHamily

Rant

I’ve been trying to write a blog post since June. Mostly because I want you to know that Mia is stable; she’s feeling quite well.  The humidity of the Summer & September really had a terrible effect on her, we were so thankful when it was finally finished.  It’s an awful feeling when all you can do is sit by as the humidity relentlessly makes every single one of her PH symptoms go from bad to worse. I’m hoping with the end of summer that these feelings of anger and jealousy will go away as well. Yes, I admit it, I’ve felt that way. Sometimes I do feel sorry for myself as I grieve for the life that I thought we’d have. And yes, it is often hard to be on the outside looking in at everybody else out enjoying the warmth, the water, the beach and everything else that makes summer so great; ’cause we weren’t. I’m sure that I’ll feel differently time, but right now I don’t. Right now it just sucks. So, what were we doing? 

We were carrying Mia up the stairs to avoid the chest pains she suffers when she walks up the stairs by herself. And we trying to avoid the heart palpitations that were so thunderous I didn’t even have to be touching her skin to feel them. We were also trying to adjust and live thru my being diagnosed with BiPolar Disorder, PTSD, Anxiety & Chronic Depression. I now have 4 more reasons to hate PH; They say my diagnoses are a result of Mia’s diagnosis. And trust me, developing and living with a mental illness is no picnic for me or my family.  This summer was tough and it was only with help and support that we survived it at all. Truth is we were struggling in every single way possible; We Still Are. 

Hey, did you know just how much our mental health system sucks! Well it does.  It’s impossible to get anywhere; especially without a psychiatrist. Apparently there’s a shortage of them province wide. In York Region there’s not even a wait list to ask to be put on! Personally I think it’s horrendous but even more so, it’s dangerous (and more than a little scary)

On a brighter note: Mike deserves a Metal AND a Big Shiny Trophy for continuing to do literally everything to keep our heads above water. The most important thing to him is us; individually, as a couple and as a family. My man is amazing and he impresses me everyday.  I can truly say he’s my Hero, my Prince Charming & my White Knight all rolled into one.  Where would I be without My Mikey, he rescues me Daily and without him, I’d be nowhere. 

Oh!! And no one is sleeping around here either… like Ev-er! But on the positive side: We’ll look like real Zombies just in time for Halloween! 

So there’s your update. It’s not frilly or exciting… but it’s honest 💜

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Calling all GLOBAL Feel-Better-Fairies 🦋

I need your help – again… 😬 I was thinking (a Dangerous Pastime, I know)… we’re hoping for World Awareness for all 25 million PH patients worldwide, right? Yes, yes… I know, I know… Perhaps we are already #PHaware, and don’t have a single cent that we’re able donate right now (that’s totally ok, me neither) and we’re tired of hearing PH facts or listening to me cry (me too!) – I get it, trust me, Quite Frankly I’m tired of the whole damn thing, too! But… I can’t give up, because my kid’s life is too important to me… So here’s what I’m thinking: I’m thinking… PH is STILL a Rare, Progressive, Invisible, & pretty much Unheard of disease. What if each of us personally shared Mia’s story along with her YouTube link introducing the #PHpie Challenge … you know a real 1-1 conversation or FB messenger or whatever our favourite way to effectively communicate is, and What if we directly contacted at least 1 friend who is outside of our own close circle… and maybe even outside of our comfort zone… maaaaybe even 2 friends, one of whom lives in an entirely different country!! What if we all personally asked a few of our friends to help us raise awareness for Pulmonary Hypertension. Maybe if we share what the heck this PH disease is with someone who has not already been saturated with more PH info. than they can shake a stick at and doesn’t want to hear another single word about it! … Maybe… just maybe they might just want to take the challenge themselves or make their own #FearThePieForPH or #PHpie Challenge video, and maybe they could ask people to donate to the Pulmonary Hypertension Association of their own country. Maybe it just might save a life! Maybe that life might belong to a person who knows nothing of PH yet have been wondering what the heck is going on with their own health, or are trying desperately to figure out why a loved ones health seems to be deteriorating so quickly. The journey to discover one has PH is HARD and stressful, lonely, confusing at is scary as hell. What if just maybe Mia’s story can bring awareness or perhaps even a tiny bit of comfort to a person who finds themselves without answers – and might even get someone who is unknowingly suffering with PH a proper diagnosis and on a treatment that can slow the rapid progression of this disease – cause without treatment, a person with PH will live less than 3 years! Often PH patients have been thru so many Doctors who don’t even know what Pulmonary Hypertension is, let alone how to look for it. I don’t want anyone to suffer, it’s horrible. No One should Struggle to Breathe.

Am I off my Rocker, or could this work? What’cha think? Can we all take a #PHpie for the Team Mia and make our PHamily even bigger!? I wanna thank you in advance for any awareness you may bring to another on May 5th (Go Purple!) and for all the awareness you have already spread on behalf of Mia and The Berdan-Clan. Your support is precious, I’ve been talking to a lot of  PHmoms who would give their left arm for the support system that we have! I hate to ask… But do we have it in us to do it again?


Here’s the Link to Mia’s You Tube channel introducing the #FearThePieForPH Challenge. (Pssst: it would make her day if you’d also subscribe and like her page, too!!)

I’ll even try to make it as easy as possible to share Mia’s story with friends… The following is our journey as I tried to explain it to new PH mom who asked me to share Mia’s story. Her 5 year old daughter was diagnosed with IPAH 2 weeks ago:

OK here’s our story: Mia has never really been a sportsy person, she’s more of an artsy person. She’s a singer, dancer, actress – a very creative individual. So when she started losing interest in those things, and when she struggled with her breathing to the point where it was difficult to walk across the stage (At competition) and belt out out her lines as she played ‘Molly’ in her theatre groups production of ‘Annie’, we started to worry. She always seemed to need to take so many breaks while walking, I thought she was being lazy!! All she ever wanted to do was be inside her iPod ~ as if shutting out the world. She didn’t want to do anything… and she looked greyish, thin and kinda unhealthy in general. I describe it as Mia was losing the Sparkle that made Mia who she is. I asked my family GP (#1) for a referral to a Pediatrician (#2); who sent us to the Allergy & Asthma clinic (#3)  who diagnosed her with Asthma, gave her puffers and sent us along our merry way. That was May 2016. By July, she could no longer walk up the stairs, she would faint for no reason, she passed out ontop of me in Chapters bookstore. She passed out and knocked her noggin off the car in our driveway. She started seizing, and waking up with chest pains in the middle of the night. Asthma? Ummmm no! I don’t think so. I called the asthma clinic at our hospital, explained what was happening and I was told they that the doctor wasn’t available. I said “Good! She doesn’t have asthma! I don’t want to see the asthma doctor!” So I asked if I was going to be coming in through emerge in the middle of the night when my daughter wakes up seizing again, or they could give us an appointment now and we’ll see whoever is on shift this afternoon. What time was our appointment? 2:30!  Thankfully we didn’t wait long and after listening to our story, Dr. Jasvinder Dhillon (#4)  immediately had her do her best to across the length of the room.  She was able to do this for all of 3 minutes before she couldn’t anymore and then he put a stethoscope to her chest. Next thing I know, she’s in x-ray and she’s having an EKG and they’re ordering an urgent echocardiogram for the next day. The X-ray showed she had an unexplained shadow on her lung.  The prescription pad for that echocardiogram said: Rule out Pulmonary Hypertension. What the heck is Pulmonary Hypertension? The moment I got home from seeing Dr, Dhillon ~ I googled it. All I saw were the words: “Heart/Lung transplant, Fatal and No Cure”.  That was enough for me, I turned off the computer and cried uncontrollably for hours – I tried not to freak out or jump to any conclusions all while trying desperately to convince myself that there was no way that our Mia had PH… NO WAY! We went for that echocardiogram the next day, and Dr. Singla (#5) confirmed our worst fear: He suspects Pulmonary Hypertension. (What?!? NOOOoOoOOo!! No no no no NO!! This can NOT happen to us, we’ve had enough in his life!)  We referred to Sick Kids Hospital and she endured what felt like 1 trillion tests – the poor kid was put through hell, literally! Poked and prodded at for hours on end for 2 days in a row. She wasn’t able to have the Right Heart Catheterization (the golden standard test to definitively confirm PH. All PH patients have at leasy one to get an accurate pressure reading to prescribe the meds) Buuuuut because with her PH came a Central Sleep Apnea – (isn’t that a fun little extra added bonus to an already horrible diagnosis – YAY!! That’s just faaaaaantastic!) We were told that if she was given the Right Heart Catheterization, there was a 2% chance that she would make it off the table alive. So Dr. Humpl (#6) took a shot in the ‘grey’ and put her on a med called ‘Remodulin‘ via Sub Q pump. I’m happy to say that NOW Mia’s  PH symptoms are stable, and thanks to the Remodulin… that central sleep apnea is gone! Hooray! Good News!

So how did all that happen? … And when?  Because after Mia was born, the Nurses checked her over thoroughly and we were told that a pinhole and a small murmur were detected in her heart. She was followed by a cardiologist every few years from 3 days old until 7 years old – she was declared as having a normal healthy heart on October 24, 2013! Mia developing PH so quickly and out of nowhere is about as likely as my sister being killed in a car accident on a deserted highway! And that happened too, so… idk wtf is going on – but I do know that PH is progressive, it is life threatening and PH patients all over the world a Cure. Would you help us?

In the meantime, here are some shots of some of my PHriends and PHamily taking the #PHpie challenge, in addition to a few pictures of how we engaged the help and support of the ALWAYS AWESOME Sick Kids Staff.  Enjoy!

Inhale… (updated May 1&23)

#LatestUpdate: 

I had to make sure you knew this: #IAmReady for this #RightHeartCath AND #TheVibeIsRight. Talking to all of my Peeeple for this whooooole weekend, has helped me write this (INCLUDING you!): 

**Sick Kids Called today about 12 hours ago!!**

😱

🌸Thank you!!! 💞

So I say ~ ‘Rescheduled Again?’ Bring it!! That’s okay… she’s healthy this-time it’s rescheduled with #LESSTimeToWorry !! Buuuut with Enough Time to call all the #PrayerWarriors &/or those with #TimeToGetTogether. In other words: We’re Calling all OUR #PHamily who’s *Always* there for us through ☔️& 🌈= 💞it’s #Priceless. 

Thank You  ~ The Berdan-Clan 🍒💣

PS. Love you Guys!! Thank you for all you Love & Support & being the other 1/2 of my Brain! Ooooof course I also say that to MY mum all the time. 🤓#ItTakesAVillage, Right? Also: Miss Beans will not be in school tomorrow either…. She is ‘A Person’ & ‘She is every bit a Part of this #PHamily, as well. And she outright refused to stay home and go to school! And Good for her, right? She is ALWAYS there for her Sister. I’m sure she wouldn’t expect to be anywhere else. I Love that kid! She’s a Real Sweetheart – yet a BullDog at the same time… kiiiiiinda like her parents?🤔 : 😝🤗😈😳🤣 aaaaaand maybe a few other #PHamily members I know 😘 xo

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May 1: Here’s the latest update: The week before the procedure, the Berdan household was desperately trying to keep sickness at bay – which wasn’t easy because there were many in Mia’s class who had come down with the gastric flu. Well, despite our efforts, Mia caught it and directly followed it with a cold, including a wee cough. I called the Cath-Clinic just to make sure we should still come. They suggested we should pack to stay the nite, and come by 8:30am, she would be assessed by the internist and Anaesthesiologist to see if we were all clear to proceed. Needless to say my nerves and anxiety made me feel quite sick leading up to the Cath, aaaaand I knew they’d stay that way until this stupid Cardio-Cath was finally done and she wakes up in recovery all safe and sound. SoOooOoo we arrived at Sick Kids and Mia was seen by a nurse, and a cardiac fellow and they said they thought she’d be good to go. Now that being said, they reiterated she could also still be sent home if the anesthesiologist isn’t comfortable. So still we waited. The internist came in and checked her out, then he went to confer with the Anaesthesiologist who said: ‘It’s better to do it another day when there’s no viral infection present at all.” So we got rescheduled for MAY 25th and went home. Basically the long and the short of it is that they COULD have done it with a slight residual viral infection left over, but what’s the point for two reasons: 1. Always the Risk with an the Anaesthetic  2. And They wouldn’t get the accurate pressure readings that they’re hoping for. I know it’s for the best, and I’m happy they’re being cautious… I’d never risk putting Mia in danger on purpose – I just want it to be all done. May 25 it is. 

Original Post:
 …then Exhale… Repeat. 

Breathing… It’s something that most of us do automatically with very little (if any) thought. Totally taking for granted that our next life sustaining breath of air will just be there; ready to be inhaled. But what if it wasn’t? How would that feel? I can imagine it might feel a bit like drowning, including the frantic panic of not having any air to breathe. No thanks, that’s friggin’ scary. I imagine that’s what untreated PH might feel like, or when a PHer gets sick… 

These are the things I think about when my world is silent. I don’t much like silence, nor letting my mind wander… But today I sat in my backyard in the sunshine. Aaaaand strangely I found myself alone… How Odd, yet completely lovely… and so here I sit, Alone. Just soaking up the warmth of the sun, drinking coffee and thinking… 

Phew ~ It’s Spring! 🌼

Wow. It’s been a while, huh? Sorry about that. I’ve been hibernating all winter. Yes… Literally hibernating. I’ve gone nowhere, and I’ve seen practically no one: Admitedly by choice 😔 Please don’t think you’re the only one who hasn’t heard from or seen me, you’re not. Apparently this adjustment to life as a PHamily is gonna be a helluva lot harder than I thought it would be… Holy Crap, most times *I* find it hard to Breathe, let alone function… But here we are continuing to trudge thru; juuuust like we always do 🙃it’s coming along… just WaaAaaY more slowly than I’d like (and as we know; Patience has never been my strong suit 😉)
So what’s happened since I last updated this blog?

We believe we have figured out which of her many sterile thing-a-ma-bobber products were causing Mia’s skin to have such a reaction to her Site. Tagaderm. And it just so happens that the Sites we were using contain that adhesive… SoOoOo we switched Site Brands and she’s not even as half as itchy as she was: Win! *Happy Dance*  Doesn’t that look better? ⬇️Oh! And we’re really close to getting her waterproofed for the summer! Yay! 🎉 🤞🏻

Mia is scheduled for her Right Heart Catheterization on April 26. Am I worried about that? *insert blank stare here: 😳* Of course!! No parent I know wants to put their kid thru an invasive procedure. But I also feel strangely at peace with it ✌🏻 She’s certainly in much better shape than she was in September when they told us there was a 2% chance she’d make it thru. This time, I don’t doubt she’ll make it thru – Have you met Mia? She’s a Warrior, a PHighter with a such a funny positive attitude AND she has Kick-Ass attitude should the situation warrant it. So I guess yes I’m concerned, but no I’m not overly worried. Make sense? She’s not Done yet… and as long as I can do anything about it… She’ll Never Be Done. 💞

I found a Mom-PHriend!!! She’s AWEsome & Ah-maz-ing & We are so much alike! (Notice how I slipped myself a compliment there?!)  We have so much in common including: She is an Activity Director in a LTC facility and her daughter also has PH. Their PHamily has been PHighting for 4 years now 😔 I hate that they have been, but I’m glad that I found her. Best Part: She only  lives 2.5 hours away… Not bad! It’s nice to have someone who can actually say, ‘I’ve been there’. In fact, she’s often described & validated EXactly how I’m feeling without me so-much as telling her much… via text… that’s pretty amazing, AmIrite??

I contributed an article to the Spring edition of CONNECTIONS magazine. It’s ‘The Official Magazine of the PH Community’ … I’m guessing that should be out soon 😊

May 5th is #WorldPHday. So in addition to Everything going Purple for PH (I guess they figured it was easier than Periwinkle?) we’ve been racking our brains to try and come up with an idea to make the whole world more #PHaware. No pressure there, right? 🤣 I believe we may have found something good tho! So stay tuned… we’re working on the ‘script’, then Mia wants to release it on her own YouTube channel. What a kid. She impresses me everyday; both she and her sister… they make a really good team. #MoeFlo&TheBean

Waxing Wednesdays are starting this week at the Spa http://www.serenitynowspa.ca — More services will be added soon, but for now… It’s time to ‘De-Furr’ for Spring! 🌵🌸

So now We’ve also been figuring out what each of us need for self-care.  Mike learned what he needs a long time ago and I’m working on allowing myself what I need without feeling guilty for accepting help. Now Mia and Allie are working on what their needs are. Allie requires company and attention ALL the time and Often Mia wants to be alone (you can imagine how that goes down, right)

Other times Mia wants to get lost in music.ly or YouTube. This time; she needed a manicure, a trip to Rexall and her Mama 💞

I’ve seriously never seen such an instant elevation in mood than when I told her she could have the Katy Perry mascara. Now it’s definitely confirmed: She is SO my kid!

Here’s something Huge… Mike and I decided that Mia should be under chiropractic care… so she is now under the care of  Dr. Josh at Crossroads Chiro on Eagle street, in Newmarket. Turns out her spine wasn’t looking so good, we figured there can’t be anything wrong with opening up all the pathways so the info can flo from the brain to everywhere it’s supposed to go, right? And this is the gentlest chiropractic care I have ever seen. We’re greatful to have found him and his wonderful staff  😉 xo

 

So that’s it, This is what the Berdan-Clan have been up to lately… we’re just figuring stuff out, living life and doing the best we can to be as ‘normal’ as humanly possible… but then again, we tend to think that Normal is just simply overrated 😘Oh!! And the most important thing!! Today we celebrate the most PHabulous Man on the Planet! Happy Birthday, Mikey! Thank you for always being the calm in the middle of the emotional shit-storm of ALL of your girls 😬 And for always figuring out a way to keep our heads above water; no matter what we’re facing. Just when I think it’s impossible to love you even the tiiiiiniest bit more, I’m proven wrong. You are my perfect partner – I’m SoOoOoOo  Luckyyyyy 💞💫 (Also Doesn’t hurt that you’re Hott!) xo

#PHightMode – On?

When Mia was diagnosed with PH this summer, we came out of the gate PHighting – making sure everyone in our world knew what Pulmonary Hypertension was and taking every opportunity to raise both awareness & funds…

Then Reality Struck. Aaaaand I pretty much stopped communicating with just about EVERYone (so no, it’s not just you 😉) I’m in hibernation mode. Yup. Seems I’m in a funk that I just can’t seem to shake.

I know I need to get back into #PHightMode – & I need to do it sooner rather than later… It’s been a looooong cold winter & although Mia’s condition IS stable, more often than not she feels pretty good & some really positive things have been happening lately – so what’s my problem… I should be happy, right?  Yes, of course I celebrate every victory along the way, but the problem is: Stable is not good enough for me; Stable isn’t the end goal… The Cure Is!

Let me share with you a few pages from my journal… this is me trying to build myself up for the PHight…

Mia was our 5th pregnancy & our 1st child.


I’ve been wanting to post a blog like this for a few weeks now, but I reeeally wanted to wait until I felt like I was actually IN #PHightMode, perhaps even with some sort of ability to motivate people into joining the PHight – But I’m still not & I don’t know how.
I am trying, I just don’t actually know what to do. I don’t seem to have the energy or the drive; that is VERY unusual for me & I can’t figure out why. But I can tell you this: It’s Frustrating as Hell. The only way I can seem to brighten up is if I put myself in denial of my reality & pretend that Mia doesn’t have a progressively fatal condition that doesn’t have a Cure. And yes of course I fully understand that I don’t know what the future holds & there could be many medical advances in her life time… but if anyone can offer any ideas on how NOT to think about my baby having that kind of diagnosis.. please, help a Sista out.

She’ll go down in Hissstoryyy..

What a busy day!

It was Clinic day at Sick Kids… this happens every 3 months or so… our first appt. was at 8:00am and we got home at 4:30pm – we are zonked! But I didn’t want to leave you hanging (in case you were wondering what happened)

Firstly: The Bean’s Echo came out Normal. Yay!

AND today came with more good news… buuuut before that…

On the not-so-good side, she had a lower 6 minute walk test score, because there was more stress on her heart, as shown thru the Ekg she wore while walking. She also got quite short of breath and had slight chest pains during her 6mw test. She had to slow down quite considerably. This was concerning… so, she was been fitted with Holter Monitor and she’ll wear that for 24 hours & record her daily activities if ever she feels PH symptoms. Her friends should have fun with this at school 😉 (I personally think it may have more to do with lack of sleep, over excursion, and poor diet choices. Whilst away – still love the word whilst)

On the more Positive side: Her pressure in her lungs appear to be lower as shown by the echocardiogram – This is a good!! This means the Remodulin is doing its job, they’re even going to up her dosage juuuust a bit to give her a little boost; ’cause of course they still don’t know the exact pressures in her lungs, so they will need to do the Cardio-Cath in a few months. Until then, we carefully increase the Remodulin.
Remember the sleep clinic on January 31… the one a lot of you joined us via FB Live? Well the results from that have shown a HUGE improvement!! And it also comes with the best news ever!! Mia gets to ditch the Oxygen at nite!! Yay!!
In fact: The change in her sleeping is so HUGE it’s NEVER been seen before – (remember when she was waking up clutching her chest in pain and seizing; causing her to stop breathing?) That’s gone!! Like Totally Gone. The Remodulin fixed that, too. Seriously… They are PHlabbergasted! They’ve never seen this result on anyone else, any age, anywhere – ever! Of course they are a team of Respirologists, so they’ve probably never heard of Remodulin. So now our little Miss Mia will be a Case Study in a Medical Journal & Medical students will learn from her experiences.

That’s Pretty Cool, huh?
Of course Mia ALWAYS needs a Selfie! Why should Dr. Humpl escape the pleasure 😉

Mia, Dr. Humpl, Allie & Janette all with their Disney World Lollipops

Dr. Saadoun Bin-Hasan (Respirologist Fellow): He had not seen Mia since August and was WOWED by how good she looked! She’s gained 11lbs since the summer and looks so much better – those damn invisible Illnesses; they’ll trick you every time! 😉

 Dr.Bin-Hasan is the man who will be writing Mia’s Case Report.

Priorities Require Tough Decisions : Updated April 10/17

Update: Serenity Now would love to introduce: ‘Waxing Wednesdays!’ (with a portion of profits benefiting Pulmonary Hypertension Association of Canada) Text me if you need to be ‘de-furred’ 🙀 9057171613

🙈

Original Post: So if I am to be completely honest about my feelings, and I’ve been trying to be… I feel at this moment in time that I need to be quite inwardly focussed. It’s only been 6 months since I found out that my baby has a progressive lung disorder that is affecting her heart. I have to try to figure out how to wrap my head around that it IS terminal and right now there is no cure.  That’s a helluva blow; certainly one I never expected that we were ever going to have to take… yet here we are.

The numb stage has ended and now we’re left to figure out how we are going to live our life in a whole new and completely different way.  It’s not going to be a ‘New Normal’ – because when it comes to PH there IS no such thing as ‘Normal’.  I use to be able to multi-task like a champion; now I can barely think and I’m on call 24 hours a day… when am I supposed to figure this out?

With that being said, I think gonna stop working for a little while. I’m not worried that I’m irreplaceable,  people can have their fingers and toes done anywhere. However I also know that people come to ‘Serenity Now! Spa’ because they enjoy my company and I love that, I really really do… and this is why this is decision is so hard. I just don’t have the energy most of the time, I feel like I’m already running on an empty tank. And right now, with whatever energy that I do have, I have to be able to focus on what is most important: Mia and Allie and Mike. And me. I have to take care of me.

My job takes more energy than you’d probably think. I mean it certainly isn’t a difficult job, but it can be quite emotionally taxing. It’s not always easy to be happy, talkative and personable all day, while I listen and talk with my clients about their lives, trying to rack my brain to help them figure it out… I’ve always loved talking to all kinds of different people and learning  from their experiences. I refuse to give my clients less than what they’ve come to expect from me at Serenity Now! I care too much about the business and relationships that I have built because of it. My clients are more than just clients to me. We share our lives.  And besides – I try not to do anything 1/2 assed. It’s not going to be a forever thing, I promise… just until I have had a singular focus for long enough to figure out what the Berdan-Clan needs to survive this diagnosis as a family.

Sadly I know that I’m taking a risk of losing my whole client base and essentially losing my entire business, but as a family, we need to be able to move forward, and right now the only thing I have to talk about is Pulmonary Hypertension or Mia’s pain, or hospital visits and Doctor speak – and I don’t have it in me to talk about it and explain it again and again and again… I can’t live in that headspace while trying to survive a life that I didn’t ask for, that is not only really really hard, but it makes me experience my initial heart break too many times and too often. I’m really not in an emotional state where I can do that right now, I just need time to think, to figure shit out and do try some trouble shooting. Aaaaaand then I’ll be back ✨

The Lesser of Two Evils

Remodulin. To the PH world it’s a Life Saver… buuuut when delivered by SubQ pump, it’s also a huge pain-the-ass to the life that it’s saving. Lemme try to explain something that hit me pretty unexpectedly last nite…

Mia was showing so much more of an interest in her Site and the process of her medication (yay!! she’s engaging!) that I suggested she practice the sterile procedure with the Saline that Mike and I were practicing with in September. Well! Doesn’t she have to take it one step further and suggest she hooks ME up to the a pump filled with Saline! She’s excitedly explaining that I could do her medication/cartridge changes and she could do mine! I say: “PARDON?!” But I’m thinking: ‘Umm No thanks! I’m good!” And she continues with a million reasons why it would help her SoOoOo much!! That was January 7th. CLEARly she won; today is January 21st (Happy Birthday Auntie Barb!) and I’m still wearing the damn pump…. 24 hours a day, juuuuust like her.  I do plan on sharing all my fun pump experiences later, but for now… I wanted to show you the ‘choice’ that PHers have. Ready? Okay! ✨

As I say, mine was inserted January 7th – hers on New Years Eve – The date of the pics was January 20th

This is what they looked like when we took them out. (I am sorry I don’t have a picture of mine, I was surprised with what I saw, that I forgot to take mine)That does NOT look like happy skin at all! It’s itchy and it’s sore… it’s kiiiinda too sore to scratch, so she asked me to cover it up ’cause she didn’t want to look at it or accidentally scratch it. Can you blame her? Youch! Aaaaand since I wasn’t risking infection, I did so with sterile stick-free gauze. 

I don’t know about you, but I’m pretty sure no one would want their skin to feel itchy, rough and sore.  I am DEFinitely sure that I couldn’t find anyone who would say they’d want their skin to look that way. If this is the better option between two choices; well I’d say it’s a pretty shitty ‘choice’. 

Essentially a lot of PHers use Remodulin because really, it’s a pretty awesome medication! The difference in how she feels is astronomical since starting on this drug. And when she’s not suffering from the pain she gets with every Site change — she has so much more energy that she almost seems normal. *Almost*  I mean to look at her, you definitely wouldn’t think there was anything wrong with her; let alone that she was a very sick little girl. 

So what hit me last nite is that a lot of PHers choose use Remodulin via SubQ pump with all it’s pain, side effects and after effects because even tho all of that is quite horrible, it’s still a better option than not being able to breathe. That sucks. It really does. 

Stop the Reeling!

My body feels like its been hit by a MACK tuck. January seems to have been emotionally difficult for me so far, particularly this past week has been quite distressing with extremely harsh PH realities hitting a helluva lot more than a little too close to home. The truth is, and I don’t care who you are… if you’re a parent and you hear that a 10 year old catches the flu and ends up needing to be hospitalized, it miiiight make one think about getting your kid a flu shot. Faaaantastic! Done that. But what happens when that kid you’ve heard about dies? What then? Well, you maaaaay be thinking it’s definitely worth getting all of you a flu shot. Awesome. Great. Done that, too! But what happens when that 10 year old who caught the flu actually dies within 2 weeks because she had very same extremely rare disease that your kid has?  What Now? Cause this is where I find myself…forget uncharted waters… I’ve arrived at a place that I never even knew existed! So what now? Seriously, what do I do now? Idk. I don’t know. I DON’T KNOW!!! *exhale* I…I…  Well, ok…I… Umm… I don’t really think that I have any words that could adequately describe my emotional state this week. My reeling mind was trying desperately to both accept that this is my reality AND figure out what the hell to do about it… it’s really hard to put my thoughts into actual understandable words. The environment inside my head sounds very jumbled and strangely… Irish?  (I must be watching too much of ‘The Fall’ lately)  Aaaaaanyway, lemme try: Shocked. Scared. Sick. Shaken. Anxious. Helpless… Paralyzed? Yes! ALL of those… but probably TERRIFIED or SCARED SHITLESS would be the most accurate!! It’s Fricken FLU Season people!! And I have a medically fragile child who LOOKS FINE, but if she catches flu; it could be quite catastrophic! So sometimes, yes… I have become slightly panic-stricken when my kid leaves the somewhat controlled environment that is our home and heads out onto the Battle Field: The Outside World! Honestly, sometimes that is how the world feels to our PHamily – Like a Battle Field with Flu-Bullets flying and Germ-Bombs going off everywhere ~ I’m not joking… they’re ready to detonate at any given moment. I hate winter and OH HOW I HATE FLU SEASON!! But what am I supposed to do?… make her stop living her life, stop being herself? Stop going to school and seeing her friends? Think about it… I just described jail!!  She didn’t DO anything wrong? It’s not fair that she should have to be put in jail. She’s only 10!

Mia seems to be doing well tho, despite the FIVE painful Site changes that she had to have in December… this last one, we changed the location completely and took it from her arms and put it in her abdomen… way too many Sites have been put in her arms lately and there’s nowhere left to put them! There’s just too much scar tissue and they keep ‘going bad’ and needing to be changed. And Holy Crap! Let me tell you… as far as pain goes the switch to the tummy has been the worst change to date! And although I couldn’t feel it, trust me it was EXCRUCIATINGLY painful. She couldn’t sit, lay down, stand, dress herself, put on her own shoes, bend over, sleep, eat, brush her teeth, laugh or cry… oh hell… let’s just put it this way… she couldn’t move – not without whimpering in pain… I mean honestly, the kid asked for a wheelchair to be brought in the house because it hurt too much to walk. Really? To walk? The poor kid! I would have done anything to take that pain away from her; and that’s the worst part of Site changes; I can’t. Imagine this: You see your baby in so much pain and you cannot do a damned thing about it! There is nothing that you can do or give her that even comes close to alleviating her pain – ABsolutely NOthing! Painkillers do jack-shit and she doesn’t get the luxury of being able to have a relaxing soak in a nice warm tub. So what is a mom to do?  Usually we moms just gather our babies up in our arms, hold them tightly against our chest, kiss the tops of their heads a million times while slightly rocking back and forth; just allowing them to sink into our bodies while they gather the strength they need to get thru whatever it is that is hurting them enough to make them cry.  But I couldn’t even begin to try to gather her up in my arms, attempting to help her feel safe and comfortable; because to cuddle her caused her more pain than it did comfort *sigh* it broke my heart… my heart breaks everyday.  I HATE THIS DISEASE SO MUCH… you have no idea!

But there’s always something to be thankful for, right? Honestly there is! I mean there’s good stuff happening, too. Mia is taking an interest in her disease, and is talking about it more openly and honestly now. Allie too! Mia knows she is free to rant and rave to us all she wants about how much she hates her life and that PH sucks…and we will always listen, we will never judge or hold anything she says during those rants against her later. We will also always answer her questions to her understanding and maturity level, but we won’t lie to her… (Disclaimer: during these times we must also always bear-in-mind that she’s only 10 years old aaand ever since she was really little she has always been emotionally sensitive aaand somewhat of a hypochondriac who believes anything and everything is gonna kill her…) SoOoOoOoo ya. Those are always fun conversations! But hey… at least she’s talking, right?

Anywaaaay… I believe that moving her Site to her tummy has given her a feeling of being somewhat in control of her circumstance… perhaps even feeling as if she is taking ownership of her body and learning to listen to it, which is great because she needs to be EXtremely in-tune with her body to the point where she can describe exactly how it feels to anyone so they can understand exactly what she’s talking about. So as far as I am concerned… she can look at that thing whenever the heck she wants to! And if it looks good to her… she won’t worry herself with it. And if it looks good to her, then trust me… I don’t have to worry about it either; that kid does not want another site change. Buuut she also doesn’t want to feel her PH symptoms return either because they were way way worse ~ I can’t even begin to imagine! I’ve heard an adult PHer actually compare Site-pain to childbirth… saying she’d rather go thru childbirth any day! And Mia chooses to take the pain. Every. Single. Time. Because it’s the less painful option to not being able to breathe. Could you imagine giving birth everyday for 5 days at least once a month?Sometimes more!? I can’t!! We’re not talking period cramps here… we’re talking about pushing another living thing out of your lady parts WITHOUT pain meds… for all 24 hours of the day… for 5 days in a row… without any breaks ~ that’s 120 hours of constant pain… and she barely complains. No… that’s not an exaggeration! That kid, she’s my hero; I actually gave birth my very own hero (and it only took 13 hours!) Of course she can drive me crazy, but she also makes me smile and laugh; a lot! That kid IS one-in-a-million… she’s not supposed to BE the one-in-million who gets a stupid fatal rare disease! No!! It’s not supposed to be like this… PHucking PH is trying to snatch my baby away from me!! But I try my best to be thankful. To be happy. And to be grateful that I had her at all. (Yes… people DO in fact say those things to me)  I really do, and I am! But I’d also like her to love her life and have an actual childhood.  I’d like her to grow up and live a long looooong long time. She’s only 10. She shouldn’t have to worry about whether her Site is ‘good’ or ‘bad’, or otherwise. She shouldn’t even have to utter words like, ‘Will I need a lung transplant’ or ‘What if I don’t wake up tomorrow?’- she shouldn’t have to know about that shit or think about that crap at all!! She’s 10!!! This just shouldn’t even be her reality. Period! She’s only 10 freaking years old!!!  If you find yourself weeping right now, know I am too; you now might have some idea of how I feel most of the time.  So now, what if I asked you to please put on a happy face and go on about your day pretending that absolutely nothing is wrong; could you do that? Sometimes, I can… and when I do, I might just end up feeling better and maybe even having a good time.  And sometimes; I just can’t. It’s really not that easy, oh how I wish it were!… but it’s actually quite exhausting!  But I do try and I am still thankful. I really am… I have a lot to be thankful for ~ I really really do!  See…

img_6803  …. Look at their sleepy little faces… my sweet babies bringing me my morning  coffee… They are DEFinitely my Feel-Better-Fairies, too!!

Reasons to be Thankful Today: 1. Mike – he is my happy place 2. Feel Better Fairies – they help make life feel less harsh 3. Coffee – I am always thankful for Caffeine.

Reflections on 2016


2016 was a helluva year… I’m still trying to wrap my head around it TBH… and not just with Mia’s diagnosis of Pulmonary Hypertension… but with a lot of things, people and relationships. 
2016 was a year that brought with it a lot of tears, heartache, pain, fear, confusion, anger, laughter and love – and my character has been tested more times than I can count. This year the universe asked me, “What are you made of? How much can you take?” This year within a month of each other, both a very close friend of mine and my daughter knocked on deaths door – one was by choice, the other came in the form of a life threatening illness; both personally impacted my life and affected me deeply on so many levels. I have been to more appointments this year, and had enough hospital visits it would make your head spin. I have listened to more doctors speak more mumbo-jumbo that I am starting to feel more like a medical student than a mom. 

The thing is, if I had to do all this alone, my answer to the questions “What are you made of?” and “How much can you take?” would be VASTLY different than the answer I have given in the face of these challenges…because I am blessed to have a support system of incredible people who are always there with a word of encouragement, a tight understanding hug, a shoulder to catch my tears with an ear willing to just listen. I thank god for the ‘Feel Better Fairies’, they always seem swoop in and pick up the slack when I feel I can’t survive even one more minute, let alone another day, and they help tow the line until I feel strong enough to carry it again. 

So my answer is this: 

Yes! 2016 was a pretty horrendous and definitely scary year. Yes! a lot of devastating things happened to a lot of people I love. Yes! We survived things that quite frankly I am surprised we were able to. Yes! we’ve been tried and we’ve been tested beyond what one family should ever endure and Yes! (and probably most importantly) many lessons were learned along the way and my personal growth-factor is at an all-time high. 

When I reflect back on 2016 – the easy thing would be to say that it SUCKED and I’m happy to see it go… but the reality is… I will remember 2016 as the year I really started to become ME! I changed a lot this year! I have found that what I HAVE to do and what I WANT to do are often the same thing and I am happy to actually live in every moment – exactly where I am, and with the people I am with! I am finding that I am more responsible, more loving, more attentive, more understanding and more… present. Despite the shit we’ve endured this year, and the heartbreak that has come with it… we have banded together as a PHamily; borrowing strength from each other when our own tank is empty and as a result, I feel calmer, like this life is more doable and less lonely. Does that make sense? I am finding myself less judgemental and a helluva lot less concerned about what people think of me, and you know what? By freeing myself of worrying about what may (or may not) be in the mind of others… I am free to live IN my life with the people who want to be here with me. 
This year I have learned:

  • Life is precious & definitely too short, don’t take anything for granted. 
  • What matters and very clearly what doesn’t.
  • I cannot please everyone and negativity is poison
  • Stop Judging; What’s the point? We can’t change nor live another’s persons life.
  • Friendships don’t always need to be equal – I’m used to giving more than I take, but this year I’ve learned to accept help graciously… because people genuinely want to help, and because no one can or should do the hard shit alone. 
  • Roll with the punches, life is unpredictable – very unpredictable, and can change in the blink of an eye.
  • Even in the middle of trying to find a ‘New Normal’… we are realizing (and accepting) that in our PHamily there is no ‘Normal’ ~ New or otherwise. 
  • Sometimes relationships end, friends leave and/or dynamics change and that’s ok! 

In 2016 I learned a lot of lessons, perhaps the most important being PHamily isn’t always blood, and PHamily is all that truly matters.
My final take on 2016 – it was a roller coaster ride of every kind of emotion known to man and it all added up to a Beautiful Mess. 

Thank you to all who were there to help us get thru it. And Here’s to 2017! May it be a year of positive changes, I hope and pray that it treats us all well… Cheers! 
Allie, Mia & Lauren ringing in 2017