With humble thanks

I think most of the Internet knows of my financial distress – and to those who are important and trustworthy, I don’t keep it quiet.  I do try to focus on the positive, yes.  But, the reality of life with brain tumors and a rare, hereditary cancer syndrome is tough almost. every. day.  (I’m not discounting the hardships other people face.)

But, I digress.

Trying to steer this post from being “too ranty”. hehe

Recently, I was on Twitter and had shared my gofundme link or had tweeted something brain tumor-financial hardship related.  Someone reached out to me and suggested I get in touch with this organization.

I got on that in a hot second.

To be honest, it’s difficult for me to be positive (or hope) for good things to happen because my life doesn’t work that way.  My life is hard.  I’m alone.  I’m managing my life as best I can but forced to depend on my family, which is limited at best.  How I haven’t had to file bankruptcy is beyond me. But I don’t think I can put it off much longer, either.

Anyway.  I contacted Mission 4 Maureen immediately.  By their grace, I was granted financial help.  Thank you Mission 4 Maureen!  Thank you for what you do to help those of us living with brain tumors.  And, I ask you dear readers:  Please visit their website.  If you do Facebook, please consider “LIKING” their page and support them in any way can.

I thank you sincerely.

 

My choice

I know I have the right to choose.  My thoughts, my actions, whether I want to delete a social media account, whatever.

Most days, I try to choose the positive.  I try to choose the happy.  I try to choose the better option.

But today is not that day.

I am thankful to have this small space on the Internet where I can be me.  No holds barred.  Me, as I am.  No filter.

I am beyond annoyed when people tell me, “Oh, you still have a brain tumor?  I thought you had that removed.”

STOP.  Just stop.

If you had made any effort to be a part of my life, you’d know my current situation.  I choose to not share too much on the most common social media platform out there.  I find it more and more comical that people choose to use that for the end-all, be-all, forms of communication.  But, I digress.

Do I need to shout it from the rooftops that I still have 2 brain tumors?  Of course not.  But, I am not sure how to respond; rather, how to hold my tongue, when people respond to me in this way.  I have found as of late that people (even some of my medical team) seem to be judging me.  Judging me, or my honesty, in what I feel and experience every, single, day.  If you’re not living my life, or choosing to ask me, if you find me steering clear of you, you’ll know why.

A brain tumor life is not fun, folks.  The emotional strain, including financial, can be all-encompassing some days.  I will just continue to gain strength to better able choose what’s best for me, until I no longer can.

 

 

 

 

Please help me reach my goal! 

Hi! I’m doing another t-shirt fundraiser to help me with my medical bills. But this will also help me to spread awareness for the rare brain tumors I have AND #btsm (Brain Tumor Social Media). Please consider buying a shirt if you can. This is my 3rd attempt as my previous 2 campaigns didn’t tip because I didn’t reach the required minimum order of shirts. 

Thank you everyone for your continued prayers. I saw a neurologist this morning, which was a wasted 2 hours I’ll never get back. I will write about that soon. Good night! 

Name change, headaches, and food for thought

A few days ago I tweeted out that I need to change my blog name to, “Headaches for Heather”.  Because headaches.  All the freaking time.  And dizzy problems.  Added to memory problems, and the list goes on and on and on and on…

I put on a good front most days.  I have had 5 years of doing this so I am getting pretty good at it.  But, I’m tired, you know?  I am freaking tired.  I am tired of having to “act like I feel well” when some most days I am exhausted.  No one sees me on the inside, no one takes the time to ask how I’m doing, because I know they don’t “really want to know”.  Just the pleasantries.  So I do the pleasantries in response as best I can.  I am not bitter, just have accepted what now is.

However, when I am feeling a bit lonely (like I am tonight), I wish I had someone to call.  I don’t write this for pity from anyone, just documenting my life with two brain tumors and a rare disease and sharing my story in my little space of the Internet.  The reality is I don’t have anyone to call.  No one to have dinner with, go shopping with, etc.  And I have to pause and wonder why that is?  I had friends before diagnosis, or at least I thought I did.  Where are they now?  Have I honestly pushed them away?  I am always mindful of the things I now disclose to certain people, and even if others do bring up questions about my health I usually limit my responses (although it does depend on certain circumstances).  So, that leaves me the questions:  Did I bring this isolation upon myself?  Or did those once around me leave because my life became too hard for them to continue to share it with me?

World Rare Disease Day 2/29/16

Today’s the day!  World Rare Disease Day 2016.  I had an idea of something to do at my local hospital today, but sadly they denied approval.  Nevertheless, while Social Media is a great outlet, I still hope to do something else today.  Stay tuned!

In case this is your first visit to my blog, I am living my life with 2 Rare Diseases:  Cowden Syndrome, and Lhermitte-duclos Disease.  Cowden Syndrome is caused by a mutation in the PTEN geneLhermitte-duclos Disease is a rare brain tumor called gangliocytoma.

wrdd-2016-care

Goals

My biggest hope is that with this blog I can help someone feel better.  Either someone newly diagnosed with Cowden Syndrome, or brain tumors (any), or Lhermitte-duclos Disease, or any rare disease.  That by sharing my story as openly as I have it will give another the strength to take their next step forward.  You see, I didn’t have that when I was diagnosed.  I hope to help it be different for someone else.

I received a compliment today from someone on Twitter (you know who you are!) that absolutely means the world to me.  Never, in a million years, did I think of today – 4 years ago.  I want others to know that it gets better.  Now, I may scream, cry, and get on the pity pot as we are all wont to do, but I do what I can to leave all that garbage here and then go on about my days:  Volunteering, working on-call when I can, etc.  It’s not easy, but I try.

I have thought about PT these past few days and can’t believe I forgot to mention to him a few things:  that I have struggled with fine motor tasks (I notice them.  This may not be a big deal to others but I know there is a change) and I should have focused more on my gait as one of my concerns.  And also told him that when I need to stand up on things (like when working out) that’s a big, freaking, deal.  It really is.

So, I don’t know what tomorrow holds, or next week or next month.  I know my next PT appointment isn’t until next week, which will give me more time to ponder about what I hope to do in PT.  Part of me wonders if my brain can make these changes, neuroplasticity I think is the correct term.  Can I?  Is there too much damage?  Was my brain scrambled too much to make any progress?  Will the insurance people count minimal progress and any progress and give me all the appointments as approved?  All this mumbo-jumbo insurance stuff always ruffles my feathers, but I am here to try.

Yup

Anything is better than nothing, right?  I know I’ll have another post soon after the next appointment because I really want to document this PT journey.  I know there will be some tears.  Frustrated tears are just par for the course now.  But, once I get the tears out hopefully they won’t come again.  🙂

A dream is a wish your heart makes…

…or, is it?

Have you ever had one of those dreams that grosses you out SO much that even 10 hours later from waking you are STILL getting chills?  Well, I had one of those last night. I am trying to work it out, and my mom brought up some interesting points that I think are on point.

I dreamt I was stung by a bee.  I’m not allergic, thankfully, so it wasn’t a huge deal in my dream.  But, I remember it stinging.  (Ewww.  I’m getting the chills AGAIN as I’m typing this!  What the crap?) I went to pull out the stinger and as I did I pulled out all this other crap, kind of like a stick or something.  And, it kept coming.  And, coming.  And, coming.  And, coming.  It wouldn’t stop.  It was long, thin, and gross.  So, effing, gross.  I woke up grossed out.  I know I’m writing gross a lot.  Believe me.  It was.

I looked online and found some sites about dream interpretation.  Here’s one I found interesting:

Another reason that you might dream of being stung by a bee is because you think that you have had a string of bad luck. Bees usually represent good luck, and the payoff of industrious labor and hard work. So when one of these positive symbols comes back to bite you, it can honestly be a little confusing. You think that despite your hardest efforts, things just have not been going your way in life, but you can’t exactly figure out a way to change things for yourself and it is really affecting you emotionally and mentally. Don’t let yourself fall down this road. Instead try to figure out how you can make yourself feel a little better. And change your luck for the better.

I am a bit speechless.  I mean, come on.  Have you been reading my blog for a while?!  Couldn’t I have written that on the dream interpretation page about my life?  Rest assured, I didn’t.  But, I probably could have and titled it, “hopeforheather”.  So….

I get it, kinda.  I mean, I am working on many things to make myself feel better:  Exercise, therapy, volunteering, learning how to advocate for Rare Disease in person and on Social Media.  Mom said that maybe the “sticks” represented a type of “poison” I’m in the process of pulling out of me.  Makes a bit of sense, right?  This brain thing is going to be ever-changing, as is Cowden Syndrome.  More processing.  And just today I talked with the neurologist’s office and they want to refer me out to one of the big hospitals for further evaluation.  Cough cough.  So, this is my life with Lhermitte-duclos Disease.  Process.  Change.  If I didn’t know how to tuck and roll before diagnosis, I better learn how to do it ASAP.

 

 

“If I Had Known Back Then Who I Know Now: Not So Rare After All”

Hi guys!  I am super excited to share this with you.  And, it pretty much sums up why I still write on this blog and why I  share my story on Social Media.  I believe in the power of networking!

No particular order

I don’t know where to begin.  Life has moved so quickly that it’s been difficult for me to keep up.  I have several things I want and need to write about, but it’s difficult to break it all down.  (I’ve noticed that my brain works a bit differently now since surgery.)

Do I write about:

  • The neurologist and neurosurgeon appointment I had last month?  Where when I did one of the specific neurology tests for them I was so overwhelmed with my balance deficits?
  • The appointment I had with the Psychologist (Psychiatrist?) that the Department of Disability Services sent me to (after the above appointments.  Same day.)  After spending over 2 hours with him I also was saddened of the memory deficits I have?
  • The appointment with my primary doctor where we went through a list of labs to draw, most specifically discussing having started me on estrogen replacement even with my breast cancer risk?
  • That my balance and vertigo episodes are steadily increasing?
  • That concerns over my financial situation keep me up at night?
  • That issues with my brain trump all happiness I can find in my life?
  • The EEG and CT Angiogram I had Monday?
No.  They are not trying to read my mind.

No. They are not trying to read my mind.

That’s a lot, right?  And, that’s not even 1/2 of it.  But, that’s the most of what’s been on my mind (no pun intended).  While I am going to discuss most of these points (because that is why I have this blog, to write about all this.) I also am very aware that in the depths of fear and sadness of the unknowns, I need to be very aware of the good moments (days) in my life.  Because there are some of those.  And let’s face it, there’s always some sunshine, it’s just a matter of making solid effort to look for it.

  • I have just found the wonder that is The Big Bang Theory.  I AM IN LOVE!  Where have I been?!
  • Volunteering at my nephews’ school.  I don’t have children, may never have children, but the teacher in me really likes to be there. I must admit it.
  • Spending time at a local animal shelter (you can see some of the recent pics here.)  I have a super bleeding heart for all animals and if I could, I would absolutely take every cat home with me.  But, since I have so much love to give and no one to give it to (besides my nephews) I might as well spend as much time there (as I can muster).  It’s hard to leave them there, sure.  But, when I get sad I remind myself that them being there is 1000000% better than the alternative.
  • Having connected with another person who has Cowden Syndrome!  Can you believe that?  I found her (and a few more) on Instagram, but this person lives only a few cities away from me.  We met again yesterday for lunch.  I’m still reeling with the fact that with statistics of 1/200,000 people diagnosed with Cowden Syndrome, I found someone who lives close.  Un-freaking-believable!

There’s more.  Of course there’s more.  Right now, in fact, I am listening to my mom and nephew play in the hallway and Nephew #2 is laughing and having such a great time.  Hearing his laughter is just the sweetest sound.  So, my point here is this:  I know that life is a matter of focus and perspective.  It matters tons where you point your thoughts and energy.  I get that.  I totally do.  I try to be positive and upbeat.  I try to keep all my medical stuff here only, and not on Facebook, etc. because I’m learning that most people don’t want to hear about it.  Only people who deal with chronic medical issues really understand.  So, here is where I am raw and real, about what life is like with Lhermitte-duclos Disease AND Cowden Syndrome.  But, I don’t want to forget (too much) about the other parts of my life, but I’ll be honest.  When I’m dealing with LDD and CS stuff and I’m in the depths of despair, it’s freaking hard to find the good.  So, I am fighting as hard as I can to hold tight to the good stuff. And, trying to make (and find) more good stuff in my life.

Giving Tuesday

I just found out about this! Please give to The National Brain Tumor Society. And help spread the word.  🙂

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