Monday, July 20, 2015

Danielle's Story

Thank you to guest blogger Danielle Lalonde Smith for sharing her sons (and therefore her own) story of living with Neurofibromatosis. Danielle's son, Tyler, was diagnosed with NF at the age of 8. Please take the time to read Danielle's story and show your support :)

From our NF journey 7 years ago….

At some point during each and every day I want to cry; sometimes I do, sometimes I don’t.  At some point every day I ask why?  At some point every day my heart shatters into a million pieces.  At some point every day I am angry; sometimes at myself, sometimes at everyone else.  At some point every day I ask why me?  At some point every day I hate myself. At some point every day I look at my son and wish we could connect on some other level.  At some point every day I realize that I love this kid more than anything in the world, and I thank god that he is the way he is.

Today I am just freaking angry:  it is his birthday, and guess what?  2 invited friends don’t show up or call at all, one other says he would rather go to the fair with his “girlfriend”.  He has one invited guest and another friends’ younger son, and guess what, he is acting ridiculously immature and my thoughts are; is this the reason no one has shown up, or is he acting like this as a defense mechanism?  I will never know because he will not speak to me about these things. I can try to talk, but know that it will just make things worse.  It is these frustrations that continue to make me so so so angry.  I have cried, cajoled, demanded, sweetly asked for help from the school  which is supposed to be the only avenue available here in town, and have been shut down now for two years with excuses from everyone.  What it boils down to is that no one seems to want to do their job or take responsibility.  The other part is the judgement from staff about this “hidden disability”.  He looks normal; make him act normal!  What is wrong with your parenting?  I realize that sometimes Tyler’s disease becomes all about it is affecting me, how others are judging me, how difficult it is for me to cope.  I take it as a personal affront when he cannot get the help he needs.  How far do you push it?  How hard?  Will it make things worse for my child at school when all the staff despise me?  

Does it even matter?

I look into those eyes and all I see is this incredible keen intelligence.  He is so aware of his surroundings, but yet not in tune at all.  How do I teach him that?  Can I teach him that?  I have no answers still.  My son is this beautiful spirit that just needs to find his place and all will be well.  Do I make too big of a deal about some things that really are very small in the grand scheme of things?

To be continued when I have the time to put my thoughts into words...when I can stop crying...when I have the time to take a break from being a parent, wife, child & nurse and put thoughts down productively rather than allowing all my negativity to shine through, to be continued when I have any notion that things have changed or improved or anyone has made a difference, even if I have made a be continued as we learn new be continued as our world shrinks or be continued....

Monday, July 6, 2015

MRI Day!

Did you know? -- Currently, the Canadian government is attempting to reduce wait time for individuals requiring health care interventions, most specifically MRI scans. There have been efforts to reduce wait times for these scans, as Canada lags behind in it's number of diagnostic imaging devices per capita. Respectively, Japan and the United States have 35.3 and 19.5 MRI units per million individuals, while Canada only has 4.6... SAY WHAT? So now that you have a cool, new interesting fact for the day, let's proceed with the actual content of this blog post!

So, MRI day. A day filled with ambivalence and  raging emotions. MRI day brings about feelings such as fear, frustration, relief, indifference. They cause you to feel grateful to have access to such advanced medical technology, but at the same time you wish you didn't need to access it in the first place. 

A few years ago when I was still under the care of my pediatric neurosurgeon, he gave me the green light to go ahead and have an MRI every 2 years instead of making it a yearly occurrence because he thought I was "stable". Fair enough. However I laugh because this has yet to happen. It seem like every year some kind complication arises that requires the assistance of an MRI machine. This year? Vertigo and progressive hearing loss. Last year? Irregular heart rhythms and wonky blood pressure. The year before? Progressively worsening deformity in my chest wall. I think you all get the picture... nothing really stays "stable" for too long when you have Neurofibromatosis. 

Even though MRI day happens every year, that doesn't take away the emotions that accompany it. There are 2 central thoughts that typically go through my head on these days:

1. Please, let there be no tumor growth 
2. Please. let them find something on the scan

Now, I know what you all might be thinking... how can I be simultaneously wishing that nothing shows up on my scan, but also hoping that they find something? The answer is quite simple:

 Nobody wants to hear that their body is rebelling and growing random tumors in random locations. Nobody wants to have to deal with the ambiguity of whether or not there is going to be tumor growth. Overall, it just sucks to find out they've found a little (or in some cases quite large) white spot on your scan. Being diagnosed with a tumor can honestly be life altering. 

Now, to the statement that is probably confusing a lot of people: "Please, let them find something on the scan" -- For me, MRI's come about when I'm experiencing symptoms that interrupt my daily life. This year I started experiencing vertigo (which is different than being dizzy or lightheaded) and coupled with the progressive hearing loss I've had over the last few years my doctors thought it would be best to scan me. For those of you who have experienced vertigo, you know that it is NOT a pleasant experience. Vertigo is the false sensation that you, or the things around you are moving. There were times that the vertigo spells were so bad I almost fell over because I couldn't maintain an internal sense of balance... it was terrifying. When symptoms like this come up I almost have a glimmer of hope that something abnormal will show up on my scan. If they find something, then they can start to develop a treatment plan. The treatment plan will help control symptoms, and when symptoms are controlled I can live a happier, symptom-free life. Conversely, when there is nothing of clinical significance showing up on the scan, developing a treatment plan can be like a shot in the dark. You may need to trial medications with nasty side effects, go through more diagnostic tests, see other specialists... all of this takes time and effort, all while you're still suffering from whatever symptoms required you to have a scan in the first place.

I remember when I fist started having chronic headaches and my neurosurgeon put me on a medication that was "effective in 75% of patients"... SWEET! They started me on a low dose (because my weight was so low at the time) and boy can I tell you it was probably the worst six weeks of my life. The side effects I was experiencing from the medication were horrible. It felt like I had permanent brain fog... I could honestly be holding my shoe in my hand and I would ask my Mom "Where is my shoe?" or at dinner I would want someone to pass the salt and I would point at it but I couldn't think of what it was called for the life of me. I even fell asleep in class a few times. My docs were surprised because the dose was so low, but I refused to be on it any longer because it was interfering so much with my day to day life! Now that I'm in nursing, I've figured out that health care professionals have dubbed it the "California drug" because it can sometimes mimic the feeling of being high or stoned.... great! This would have been one of those times I would have been grateful for something to show up on the scan!

I should be getting my MRI results in the next few days (or maybe weeks) so I will make sure to update you all when I have those results in my hands! Have a wonderful week everyone!