Doctor, Doctor, can’t you see I’m running, running…

I was going to sit down and tell you about my GI appointment last week.

But then I got a call from the Dermatologist and received some news on a skin “issue” I have.  I thought she said at my appointment a few weeks ago, “Eczema”.  Turns out it could be a type of dermatitis, or some type of melanoma and I may need a biopsy in 2-3 weeks if it doesn’t clear up.

But I am not going to write about that after all.

You see, I haven’t been under the steady care of a neurologist for quite a while.  That scares the crap out of me.  Considering I still have 2 brain tumors.  But.  Maybe it’s fine, I don’t know.  I just don’t feel comfortable with it.  And, if there’s anything I’ve learned since diagnosis and the all the surgeries I’ve had is that I GET TO FEEL COMFORTABLE with what happens to me and my body.  My choices.  Which scans.  My decisions.  Which tests, etc.

I asked my primary doctor about a referral to a neurologist in one of the neighboring cities.  One office has their first available appointment 23 August 2017.  The next office’s first available appointment is 2 May 2017.  WHUT. THE. ACTUAL. FREAK?!

So.  My options are quite limited, don’t you think?  I’m grateful and so blessed to have insurance, but with the type that I do have, I often get pushed to the bottom of the barrel.  I’m terrified that I’ll suffer and have unnecessary complications because of that.  I’m not sure what’s weighing more heavily on my mind now…the dermatitis thing that may not heal, or the lack of someone watching my brain and my neuro symptoms.

Let’s see now, when’s my next doctor appointment?



Where is my Happy?

I had an emotional time at church this morning.

I want you to know…

I complain (here).  I scream (here).  I whine (here).  I cry (here).

But, I really do want to be happy.

Today’s awareness

My mind is mumbo jumbo right now.  Financial fear.  Credit card bills maxed out.  Delinquent credit cards?  Will I have to file for bankruptcy?  When will I ever get ahead?  Or even?

My mind continues to spin out of control.

I went to the gym tonight.  I realized I am very lucky to be able to walk.  And talk.  And exercise.  That I have some independence, even if it’s not exactly what I would like it to be.

Thank You, #2

Someone bought one of my shirts

wherever you are, whomever you are:  Thank you so much.  You are helping me share my story.  You are giving me strength to stay strong.

I am so grateful.

Love, Heather

PS.  If you would like to find out other ways you can support my Rare Disease life, please check out the “DONATE” page above or these following links:

Rare Disease Awareness storefront

My GoFundMe site

PSA 9/13/16

FOR THE LOVE please stop asking me, “Heather are you working today?”

I am fully aware that my cognitive ability and memory are not what they once were.  I can “fake it” most days.  But, I’m not “working”.  I’m not “employed”.  I can maybe substitute teach but only certain assignments on certain days.

You may think you’re “helping” me, but you’re not.  I am also fully aware that you think you are.  Thank you. 

In fact, whether you realize it or not you’re making me feel worse about myself than I already do.  If you want to “help”, ask if you can give me a hug.  Offer to make a date for lunch.  Or a movie.  Stop focusing on my job status (unless you have one to offer me.)  It’s painful enough for me without you bringing more attention to it.

Thank you.



On walking, “looking good”, and headaches

I had so much to write about yesterday.  My walk and how much I hate it, yet I see the purpose because it challenges my balance so much.  How I have been told by a few people lately, “But you look so good!” While that’s a kind thing to say, it doesn’t negate the trials and terror I deal with behind closed doors.

And then waking up to a pretty big headache, unlike one I’ve had in a long while, just ruins my entire day.  (Morning.  I am going to work hard so that it just ruins my morning).

As I’ve said many times, there’s quite a bit to manage with brain tumors and a rare disease.  Imagine if I didn’t have them…how much “easier” my life would be!

Nervous Nelly

I know no one likes a Nervous Nelly.  But, I can’t help it!  I am so overcome with terror about my financial situation that it pulls me deeper and deeper into my depression.  What do I do?  Where can I get money?  Where can I find a place where I can one day be financially independent?  Or, at least not FULLY 100% dependent on my mother?  It’s so unfair to her.  I am continually wracked with guilt for all the pain and frustration I cause her.  I can’t get my SH*T together.  Will I ever be able to get it together?

I found out today my disability hearing is November 30.  This is a great thing; however, it adds so much more anxiety onto my shoulders.  Why is it so difficult to expect good things for me?  Why wouldn’t the judge approve my disability based on my medical records and reports from my doctors? Right?

Yet who knows what the outcome will be?  And, how do I hang on until then?  I have about $200 in my checking account and 3 credit card bills due within the first 2 weeks of September.  I am pathetic and a waste of space that I cannot take care of my life!  And, I get so jealous when I come across these GoFundMe pages and people have raised 10s of thousands of dollars!  I know I shouldn’t be jealous. I should be happy those people have been blessed. But, when will that type of good stuff happen for me?  I don’t know how I will pay those bills next week.  I DO NOT HAVE THE MONEY.  My mom is tapped out.  She’s supporting many other people, too.  She can’t help me any longer. Is there some secret place or website where people can support someone like me?  Or did those people just have good, supportive friends who helped them out?

I’m nervous.  I’m hopeless.  I don’t know what else to do.  I  have contacted my church.  I have online sites to ask for financial support, which makes me feel even more worthless than I already do.

What do I do?  Please pray for me.