That brain scan life

Yesterday morning I had another scan.  I wish I knew how many I’ve had since diagnosis.  (I bet it’s 10X more than I think.)  You know, I think hope wish that every time I go it’ll get easier.  It doesn’t.

I have to ask the MRI technician every time the following questions:

  • What if there’s a power outage while my scan is happening?
  • What if something happens to you while it’s happening?
  • What if there’s an earthquake while I’m in there?
  • What if there’s a natural disaster?  Or an emergency at the hospital while I’m in there?

The technician is pretty funny; he knows me by name and me him.  He always talks me off a ledge, which I appreciate.  Plus, I’m usually medicated so that helps 150%, too.

I practiced my visualization:  I am at Disneyland.  I am at the front entrance getting my ticket when the scan begins, then I start to make my way through the entire park.  (It’s a neat little tip that works for me!)

Just like when I see the oncologist for my breast exam and think, “Is this the day she’ll find a lump?”, I found myself thinking yesterday, “Is this the day there will be growth on either tumor?”

We shall see.

Hearing. Finally?

Tomorrow morning I may or may not go before the Judge in my Disability hearing.

Will you please say a short prayer, or send up good MOJO to the stars for me?

I’m so nervous, but have prayed for my peace of mind and heart for weeks.

Thank you very much.

EDIT:  Aaaack.  I set this to be published 2 days ago in case I wasn’t near my computer today.  Found out the hearing has been postponed.  Thank you for the prayers.  I still welcome them and am very grateful.

Wandering in Thanksgiving-land

At times I find writers who say everything I wish I could. This author is one of them, her blog is a source of truth and light to me.  AND she’s living with Cowden Syndrome too!

Stories from This Life

ampere-and-volta-with-frameNot all who wander are lost.

I’ve seen this phrase posted everywhere online, whether it is Facebook, a message board, or even in Second Life. It seems to resonate with everyone from wannabe hipsters to aging hippies.

For the past month or so, I’ve been wandering in my own spiritual desert, and honestly, I have been lost. I’ve quit praying or reading scripture. Everything–including me–seems dried up like the leaves that litter our front lawn.

Now in this in-between time of treatment, I’m finding it even harder to make it day by day. The structure of my weeks–once taken up by chemo and meds and doctor visits and everything–has disappeared suddenly, leaving me feeling oddly empty. Because the waiting for what comes next is sometimes harder than fighting.

Especially when you’re already wandering in your mind and heart. Days keep passing, but that oasis of spiritual clarity remains a mirage.

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Not the best way to start my Holiday

As some of you know, I am scheduled to go before the Disability Judge next week.  This date was postponed from an earlier date this summer because I had to get new representation.

Well, I received a call from my advocate (the new one) Wednesday morning.  He asked for my permission to request another postponement.  I was driving so I couldn’t hear nor follow very well what he was saying to me, but something about him “falling on his sword” and just having received over 1000 pages of my medical records.  All this information shoved down my throat on my way to celebrate my Thanksgiving.

I felt ill.  And, still do.

He’s known about this date for months.  In fact, since this summer when I retained him to represent me.  He mentioned something else about “not having prepared the brief” as he’d wanted to.  He had been slammed with hearings this past month.

Well, right.  MINE WAS IN THAT GROUP TOO!  WHY AM I THE ONE WHO SUFFERS BECAUSE YOU DIDN’T DO “AS YOU’D HOPED TO”?

 

Is this a sign?  Is this a sign that I shouldn’t be applying for Disability?  My doctors seem to be on board, but why isn’t anyone else?  I’m not making this up!  I have 2 brain tumors, a hereditary cancer syndrome where I’m at risk to get many types of cancers, I have severe headaches several times a week, as well as having had 2 brain surgeries and am experiencing many symptoms from all that!

I guess part of me understands having just received the medical records.  And, evidently the Judge needs to go through all that, too.  So, if it was just because of that, I’d understand.  But, he could have just been schmoozing me, too.  How would I know any different?  It’s not like I trusted him with the most important thing in my life.

I’m so confused.  I’m so scared.  IF the Judge doesn’t approve the request for postponement, then what?  He has to do it anyway.  Will he be ill-prepared?  This is my life we’re talking about. It’s not like I can find another advocate at the drop of a hat?  Hopefully the Judge will approve it, but then what?  I will walk in Wednesday with an advocate who hasn’t done enough to help me?

So as of today we know nothing.  I guess I’ll find out Monday.

Oh, and I’m still broke and destitute.

Did I mention that Lhermitte-duclos Disease and Cowden Syndrome have ruined my life?

 

Do you need a fresher-upper?

“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. ”

NOTE: There may be some information in this post that you may find uncomfortable. Please be warned!🙂

Have you heard of Fresh Assist? It is a nifty product that states: “Get Clean in Between!” What a novel idea! Getting clean(er) can only be a good thing in my book. #AmIRite?

The Fresh Assist Spray came at a very good time in my life. While I haven’t (yet) been diagnosed with IBD or something similar, I have struggled for many years with chronic constipation with episodes of diarrhea. I always attributed my GI issues with being overweight, and throughout the years I seemed to manage the episodes relatively well with over the counter items and adding a fiber supplement to my diet. With all that being said, the times I experience(d) my GI issues I did have a lot of struggle getting “clean”.

Now I find myself in another situation with struggling to get “clean”. My fine-motor skills are decreasing quickly. (My fine-motor skills are decreasing due to the two brain tumors in my cerebellum. Your cerebellum is your balance center and you can read more about it and how it functions here. Your cerebellum is also called the “small brain”. I have had 2 brain surgeries and the tumors are still there.) I have difficulty grasping things (pencils, keys, etc.) and often drop things.  Now I have found toilet paper is difficult for me to grasp. Such a bummer! Can you imagine what a pain that is? So, this spray has come in handy. The directions are pretty self-explanatory: “Apply 2-3 sprays to TP, Wipe, Flush.” It made the toilet paper wet a bit, but nothing too drastic.  Plus it’s safe on plumbing.  Another win!

freshassist

I received the “Cooling Chamomile” scent, but as far as I can tell, there isn’t any scent with this one. (At least to me I didn’t smell anything.) There’s also a lavender scent, but I think I have a lavender allergy so this was a lucky thing for me to not receive that one. If you’re sensitive to smells like I am (read: migraineur) this Chamomile option would probably be best for you. I love the fact that Fresh Assist is free from: gluten, nuts, and parabens. I am very mindful of limiting parabens in my life as much as possible, and now especially since diagnosis of Cowden Syndrome and Lhermitte-duclos Disease.

freshassist3

However, with all this being said, I am just not sure this did as much for me as I’d like or expected it to. It is in fact “cooling”, which can be such a blessing when you’re wiping constantly. But, that’s about all I noticed. I still have to wipe several times, but thankfully my private area is receiving comfort. I never got into using baby wipes because in fact, I never felt clean.  Plus I worried about the wipes clogging the toilet.  This spray does help me in feeling “cleaner”, but that’s it.

freshassist2

I would recommend this spray if you have any lower GI issues and need relief from constant wiping with toilet paper. If you’re hoping for another result, I don’t think this product is for you.

With Thanks 2016

Many of you know how dire my financial status is since diagnosis of Cowden Syndrome and Lhermitte-duclos Disease.  I am humbled and blessed by the kindness of friends and strangers from the help I have received from my GoFundMe page.  I also created a Teespring store to raise awareness for Rare Diseases, which in turn helps me too.  Please take a look at the Teespring link and consider buying a shirt if you can.  I just created a new shirt yesterday!

This holiday season I am thankful for all of you.  Who pray for me, who have donated to me, for everything.  I account so much of my recovery due to the prayers of people I don’t even know.

Love, Heather

Sometimes, you just gotta

There are some weeks where I don’t have to deal with, or address, anything Cowden Syndrome related.  What a nice breather!

Then, there are other weeks (months) where I feel bombarded with medical appointments, issues, screenings, tests, hospital visits, and I feel overwhelmed and alone.

Three guesses as to where I am today.

Alas, I don’t have the luxury to sit home and stew.  I have to put on my big-girl underwear and deal.

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Dear Readers:  What do you do to get yourself over a slump?  Any suggestions that work for you? As the meme says, I guess I need to “Put on some gansta rap and handle it.”