I think it’s time

I realized this week – I don’t want to have a brain scan right now.  I had one in December.  I don’t want another one next month.

Also, I have pondered about a lot of things lately:

  • Why are the MRI’s so frequent? (About every 6 months)
  • Are they this frequent to help ease my anxiety?
  • Does the doctor want them this often?
  • There hasn’t been “significant” growth since 2011.  What does that mean?
  • Does the neurosurgeon want to scan me so often because we just don’t know crap about gangliocytoma?
  • Why don’t I want to have this next scan?
  • Will there be (of course not) any significant change if I push the scan off 6 months?
  • Should I appeal the disability denial?
  • Should I refile?
  • Should I file bankruptcy?
  • Why can’t I catch a break?

When can I get some sleeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep? 

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Hey everyone!

Why does the word “everyone” look weird to me?  Like I spelled it wrong?

Anyway.  I just wanted to check in with you.  I know I’ve been a bit sporadic with posting.  Some days, my life is pretty basic and boring:  I go to the gym and read (true story).  Other days I am overwrought with medical appointments, scans, almost daily migraines, problems with my esophagus, etc. and I feel like a weirdo (also, true story).  I try to stay busy and distract myself with things that are beneficial for my mental health:  I love listening to podcasts (do you recommend any? I just finished this one and HOLY COW! I could write more on that soon); volunteering; reading (obvi); editing photos on Hipstamatic.

Of course, I didn’t ask for this life of brain tumors and hereditary cancer syndromes.  Nevertheless, it’s mine.  My point of writing is that this week I finally have my disability hearing before a judge.  To say I’m terrified would be an understatement, you know?  I have this weird feeling in my chest:  Anxiety, obvi.  But, I can still vividly see and feel and hear my diagnosis of July 18, 2011 as if it were yesterday.  Literally.  And, it’s like my entire life since that day is rolled up into a big ball and this week it’ll come to a head.  Like, what is the purpose of my life since then?  It’s been 6 1/2 years (just 3 1/2 years for the disability process alone) and have I been wrong all along?  What will this judge think?  Is there enough “medical evidence” to prove to the judge that I am different now and can no longer work?

I pray that there is.

I’ll be in touch soon.  If you have any extra prayers, please send them my way, and to the judge too.  ❤  Thank you.

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.

Why can’t I sleep?

Does anyone else suffer from sleep anxiety?  I don’t know if it’s from the brain tumors, hysterectomy menopause, anxiety about my dire finances, depression, being overweight…or if it’s a hot mess from all that and more.

I exercise.  I try to meditate (but let’s face it) I have no idea how to do it or what I’m even doing.  I try to eat a salad a day, but I know I struggle to get enough protein because I don’t know what to eat (I don’t eat red meat anymore).

I have some medications and some natural things I take each night.  But, I usually feel horribly drunk still, the next morning.

Do  you have any tips you can offer to for my nighttime routine?  Do you do anything specific to help you sleep?

Thanks!

Shorty

I didn’t want to start taking psych meds, because with all the other meds I take I am worried for my liver and kidneys.  Yes, they are checked but that doesn’t ease my anxiety for their well-being.

However, I finally gave in.  I started 2 medications recently and I cannot deny that I feel better.

I am thankful to feel a change; and that makes me happy I can tell.

There is quite a bit of stuff on my shoulders every moment of every day.

And, I feel better.

I pray it lasts.

 

Sleep > Writing a blog post at almost midnight

What in the world am I doing up this late?

Oh, yeah.  My anxiety is flaring.  Big time.

But I had a good day today.  It started out well.  I guess.

During the 2nd hour of church I worked on some Family History.  I have such a strong calling to search after my ancestors, and there is one line in my family where I am completely stuck.  At a wall.  Either this man saw a murder or he committed a murder and changed his last name in the process.  Pretty crazy stuff.  But I am committed to figure out, somehow, what happened and to find the rest of my ancestors.

I taught the Relief Society lesson today also.  It went very well.  The Spirit was so strong, and the sisters were responsive and it was just a great discussion.  I am so lucky.

But.  Here comes the gnarly part:  I can’t deny that my brain is changing.  And I don’t know what to do with this.  My brain is changing and other things are changing too and it’s scaring the crap out of me.  I am so saddled with grief that my only option is to take more medication to help manage my symptoms.  Who knows how these symptoms will progress is another thing that scares the holy crap out of me, too.

I guess I should be glad I had a good 3 years – and now I feel it’s all going downhill from here.  I’m so scared. What do I do about my brain changing and my body changing? This dizzy crap that makes me feel like I’m going to fall over? And then what if I can’t drive anymore?  It’s weird that these symptoms seemed to have come up from no where, if that makes sense.  I have so much anxiety in my heart yet as I sit here to write it all out I’m blocked.  I cannot seem to get it from my head to my fingers.  I don’t know how to process these emotions of what’s going on inside of me.  You know, my biggest fear (when I had the first surgery) was that when I woke up I was going to be different.  And, by the grace of Heavenly Father I wasn’t.  Yet, the brain is such an amazing thing I think I had no idea how magnificent it really is.  So, as I sit here typing, I’m wondering, “What can I do to take care of my brain better?”  Well, duh.  Sleep would be job #1. But what else?  I know there are tons of things out there about classical music and our brains – and I do listen to classical music quite often.  I should really research this and look into this more…I’m afraid that my brain, or at least my cerebellum, is tired.  Wouldn’t you be, too, after a freaking 13-hour long surgery?! I need to really take good care of it.

This seems like a dream.  This doesn’t seem real.  Like, I don’t, or can’t, believe that I am the person who has 2 brain tumors, who had a hysterectomy, and will never be a mother, because of these 2 rare genetic conditions that I just found out about only 3 years ago.  I guess looking at it that way, I’m only a toddler on this Rare Disease Road.  And, toddlers need a lot of love and support.  For the record, I want off the effing road, but I know that can’t happen.

So with all this being written, I am going to go to bed.  Turn on my iPod and listen to the Mormon Tabernacle Choir hymns and just sleep for tonight.  I know I can live in fear or I can live in faith.  These 2 emotions waiver minute by minute I’ve noticed.  So, when I tip over into fear, I need to do something quickly to get back in faith. That’s why I jumped on here and wrote for a few minutes so I can clear my head.  And to remember the great things about today.

(Nephew #2 had me draw a name out of a plastic baggie because we are doing “Secret Santa” and it ended up that I drew my name!) 🙂  But, we fixed it after all.

Good night.

 

 

 

Nightly routine

I’ve told Mom how my anxiety gets much worse at night.  Not sure why, how, or what causes it, but it’s sure there.  Maybe it’s SVU and Eliot and Olivia going after the bad guys, maybe it’s because my mind goes back to the nights in the hospital, maybe it’s a lot of things.  Not too sure.  The fact is – I need to do something different at night.

The first thing I was/am going to do was make an 8 PM cut off time of no computer.  So I’ve already blown through that but I felt it was important enough for me to at least make this post about it.  So, good for me on that account.  🙂  (To clarify – post about my 8 PM schedule change but since I am here writing anyway I thought I’d write about what I did today.)

Today was good because I went to church for the first time since the surgery!  WHOO!

Today was also good because we went to the park with the kids and played for a while and ate a very late lunch.  Good times.  This little girl started chasing and flirting with the kids and they were NOT having this little girl running around after them!  🙂

I was stressing about my finances but things are great and I am getting by.  That is what matters!

This week is big for appointments – Oncologist on Tuesday.  I admit I am nervous but yet I need to find out what we do moving forward with my health.  I am stronger than I ever thought possible.  I can and will do this, and as Patty said, I am a Powerful Patient…but also I am Heather.  I don’t want the “Patient” part to define me too much longer.  I feel the sick part is in the past and I want to get back to the healthy part.  <NOTE:  Maybe I could put a note up somewhere that this blog could be titled, “Healthy Heather”.>

Prayers work (Thank You Everyone!) and have lifted me up and will continue to give me the strength my family and I need.