Hope is a Journey….

Maybe it was a long time coming….maybe it was the straw that broke the camel’s back…maybe it was just too much all at once, but these past two weeks have been a HUGE reality check and I’ve really been having  a tough time.  It’s hard to accept that I’m not a real life ‘superhero’….

And that I can’t leap tall buildings in a single bound.

Yep…I am definitely HUMAN (gasp!) and I have had a rough go at it.  It’s not really that anything in particular was ‘too much’ – it was that everything seemed to happen all at once and just pile up.

And, that…in and of itself isn’t necessarily ‘the straw‘…you see…when it starts piling up – you can ‘compartmentalize’ things and organize the chaos….

It’s like Jenga….you have it JUST right…and you’re carefully trying to arrange it to perfection….and then someone goes and pulls out a critical piece…

Yep…that’s THE STRAW

So here’s a recap of the last 2 1/2 weeks….

*(By the way…I’ve been working on this blog for a week now…just so much going on, there hasn’t been time to get it all in here!).

A few weeks ago I met with my new cardiologist. He was fantastic.  He listened, he asked lots of questions, he took his time, and he was well versed on my condition.  Towards the end of the appointment, I felt quite unwell and he looked at me and asked if I was okay.  I told him I felt hot and like I was going to pass out.  He had me lay down on the table and I proceeded to hive up all over my body and get flush and sweaty.  He asked how often this happens, and I told him it is unpredictable and that it is frequent.  He said that I was having ‘neurocardiogenic events‘ and that he felt that I had more than one autonomic dysfunction and treatment was going to be challenging as you give one medication to fix one set of symptoms and you make the opposite end of the spectrum’s symptoms worse. Of course, nothing can be easy with me.  For those of you who know me well….you know…if it can go wrong, it will…and, it has!

He hooked me to up a 48 hour blood pressure monitor (a cuff around my arm that took my pressure every half hour during the day and every hour at night) and a 48 hour holter monitor (a heart monitor)and did the testing while off IV fluids.  The results showed marked hypotension and bradycardia along with periods of tachycardia (sometimes even at rest) up to 150 beats per minute.  He was very concerned about this and scheduled me for another ‘Tilt Table Test‘ as he felt that my autonomic dysfunction has changed even from the last test in June.  It was important to repeat the test as it will help decide which medications will be best and which will not be optimal for use given the results.  I had the test done and preliminary results show that there is certainly a change.  😦  For certain, my Postural Orthostatic Tachycardic Syndrome (also known as P.O.T.S.)  is worse than it was.  The only way I can explain it is this way:  Ever run a great distance (one that you’re not used to running)? Remember that sensation you get after you’re done…the heart pounding out of your chest, feeling a bit winded, extremities weak????  That’s what P.O.T.S feels like to me….when I go from sitting to standing, or sometimes just when I am standing my heart rate will jump 50 or 60 points, sometimes it will even double….and, if you match that up with periods of VERY low heart rate (40 beats per minute) and feeling really woozy then, it’s an all day (unpredictable) roller coaster.

Mix all this up with the fact that 2 of my physicians want me to have a port placed and I am just NOT ready for that step.  I guess, it’s more just that it makes it MORE real that the disease process is progressing – and I can’t stop it.  Right now, I’m still not really wild about my PICC line…..but it IS keeping me out of the hospital and more stable than I’ve ever been.  It’s hard sometimes to focus on the ‘positives’ when so much ‘negative’ is going on….but this is my mantra:

We had a crazy few weeks with follow up appointments for the kids.  Sasha and Will are still dealing with the same issues as before – they are stable, minus Will’s increased fatigue and autonomic dysregulation (blood pressure fluctuations, feeling like he’s going to pass out and going pale, blood sugar fluctuations, temperature dysregulation – mostly with the heat)  as well as newly found to have the same lid droop that Sasha’s had all her life – it’s called “Ptosis” (pronounced “Toe-sis”).  Sasha was found to have a Venous Hum (which is new – and isn’t a cause for concern but it sure sounds pretty crazy when you listen to it!).  Their muscle fatigue and weakness persist and their hypotonia has not improved.  The neurologist increased one of Sasha’s migraine meds as she still doesn’t have fantastic control over her migraines and she’s also having some attention issues in school (see below) and this medication can help with attention also – so we kill two birds with one stone instead of adding in another med (which none of us are willing to do).

2 weeks ago, Will started having dizziness at school that progressed to feeling like he was going to pass out, nausea, headache (in the back of his head near his neck) and numbness in his extremities. I picked him up at school and took him to his pediatrician.    His neurological exam was essentially normal but even the doctor agreed that he looked pretty punk and that the symptoms were concerning (especially since he doesn’t ever complain about much of anything).  She called the neurosurgeon at MGH and from there, the neurosurgeon instructed us to go to MGH ER for evaluation.  After a very LONG day – it was decided that his symptoms were likely a result of his Chiari Malformation worsening or being exacerbated and, that, since his symptoms were mostly resolved, we would schedule an outpatient urgent MRI (he needs sedation – he can’t sit still for that long) and be seen directly after that to discuss if he needs to have surgery to fix it.  Easier said than done, I might add…..you don’t just get these appointments to just ‘fall’ in your lap…..they are hard to come by because you have to coordinate with anesthesia. As it stands now, it looks like his MRI is this upcoming Monday morning….and again…..I keep telling  myself…..

The next day we had a meeting at school for Sasha and we discussed how much difficulty she was having in school.  I must say, though the meeting went pretty well (our school has been very attentive to the needs of my kids and truly do care about what goes on with them), it was hard to hear that she’s struggling so much emotionally and academically, and that – despite how hard they are trying to understand her needs,  they seem to feel that drugging my kid up to make her pay attention is the proper solution. It has been clearly stated that, while her attention issues are certainly present, they are absolutely connected to her energy/arousal state (have you ever tried to pay attention when you are exhausted and feeling tired or crummy?), and also the fact that she lives with chronic headaches (again, have you ever tried to pay attention when you have a headache?)…which has been demonstrated on every EEG that she has a wave pattern consistent with what folks with migraines have.  She’s already on more medications than we’d like her to be on just to keep her symptoms at bay – NO ONE (neither Ralph nor I nor her medical team) is willing to put her on another drug. I did feel like we were just not on the same page….and I just wanted to pull my hair out!

I have to say, I was a little stunned that they didn’t have any other ‘plan of action’ or ‘solution’ for her when they (the school) were told that drugs were off the table.

Is this what this day and age educators have as their only viable solution – to drug our kids up so they’ll shut up and pay attention? I was definitely disheartened by this – but I still must add, they truly do care about Sasha and we LOVE LOVE LOVE her teacher and principal, but it is hard not to question the direction things have moved in with society as a whole.  I mean, do we have NO other solution???  I did…and so did her developmental psychologist – and we offered those solutions to the school at this meeting.  To be honest, they didn’t seem really ‘wild’ about any of the recommendations.  We want her back on an IEP with accommodations  – we’re waiting to have a ‘team’ meeting and we’ll go from there.  Meanwhile, the teacher will do the best she can…and she’s a darn good teacher, so I know Sasha’s in good hands…still I left the meeting pretty frustrated…

When we got home, I barely had a moment to decompress from the meeting and we had to do their infusions.  They went fairly well – until the end.  When Ralph was disconnecting Sasha from her infusion, Sasha started to freak out and scream that there was something on the radiator.  She said she was seeing colored swirls.  When she finally calmed down, we asked her to draw what it looked like (she said it was everywhere she looked) and she drew what looked like an ‘aura’ for a migraine.  The only thing was that she did not have any pain with these visual disturbances.  When I told her that I get these weird color things too, she seemed to calm down a bit and relax.  She was embarrassed to tell us she was seeing the colors because she was scared that ‘monsters’ had gotten into her brain and messed with her eyes.  Geesh, the things kids think of, eh?  When I told her it was not the monsters and it was something that many people see, she seemed to just melt into me with relief.  I called the neurologist the next morning and they said that it was likely more a silent migraine.  We know that Sasha has had numerous types of migraines – so this is just added to her list (we’ve had many on the listed on this link).  We are going to keep a close eye on her and hope that this isn’t something that is going to happen regularly. I HATE that she has to go through this, it’s just so unfair.

Then, I found out that our state insurance had been shut off because I didn’t turn in a form (it must have come in when I was in the hospital in September and I just never saw it).  UGH!  We got it resolved by the next business day, but it was a lot of phone calls, stress, and aggravation…exactly what I didn’t need after the week I had.

Yep folks, I am surely having a rough time with the fact that life isn’t what I had expected it to be…and I know that this too shall pass…..but for now…right now…I’m going to allow myself to struggle and learn to embrace the difficult moments because I truly believe (I HAVE to believe) that these moments are the ones that will help me to grow, learn more about who I am, and appreciate all the wonderful things I have in my life.  I certainly can’t change ‘what is‘ – but I can shape ‘who I am‘ by how I choose to let the struggles effect me.  I recognize and accept that I will not always be able to keep my focus on all the “positives” but I will also strive to focus on the fact that…..

Life is what we make it – I get that….but sometimes, the hand that you’re dealt is a tough hand – one that many may judge and not understand. The key is to not let it consume you, but to remember that these are the moments that ultimately end up defining you.

We all have our hardships – and none are ‘worse’ than others…we are given what we can handle (though sometimes I feel like enough is enough).  I believe that the following statement applies to ALL of us – in our own unique situations:

Tomorrow is another day…and I will embrace it with HOPE – because, while I don’t know what the day holds…I know this is for sure…

Why do I share this with you all?  Not because I want a single shred of sympathy – but because I know I am not the only one out there in this world who struggles, hurts, feels overwhelmed, and wishes for something different in life.  I share this with you all because I want people to know they’re not alone….and that there is no shame in being REAL with yourself and those who are in your life.   I share this with you all in hopes that this blog reaches and helps someone who was in need of comfort or encouragement….

So yes…there will always be the straw that broke the camel’s back….we all have our ‘breaking point‘ – and that’s the moment that we get off the camel, give it attention and great care – allow it to heal….and learn to get to your destination another way….cause…..

Love and Light,


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