On anxiety

The thing with anxiety is that it makes you feel like your body is betraying you.  That there’s something wrong with you.  I mean, I have always been wound up pretty tight.  It’s common knowledge if you know me, or know anything about me.  But, something is different this time.  Something isn’t right.  My body can’t be trusted.  Just like my brain can’t be trusted, either.  I don’t know how to cope.  I am trying to distract myself with things, but I have to be careful what type of things I surround myself, you know?  I know it’s a drag to hear from your “friend who always complains”.…but, don’t judge them.  Don’t think you know what they are carrying because you have no idea.

Believe me, I know that every person is the world is affected right now.  Trust me, if I could fix my brain and my body, I would have done it last week.  I know I am powerless, but this is kicking my trash.  Hard.  Please don’t get it twisted.

Checking in for hope

I am probably going to be writing more lately.  I mean, I kept this blog going all these years as a tool to help me process my emotions.  In case it wasn’t clear, I am greatly struggling right now.  People are losing their minds.  People are judging those they don’t know.  People are being cruel.  People are forgetting we came to this Earth with our God-given agency.  People are trying to get in my business.  People are bullying me because I choose different than they do.  People are horrific (especially those on the Twitter).  I am not coping well with this.  I cannot work.  I cannot eat.  I feel like something is really wrong with me.  I mean, there is something wrong with my mind.  I cannot detach from this because people are coming – for – me and it’s now affecting my career.  I beg of you, wherever you land on the v a (( i n e…….please check yourself if you’re contributing to the divide in our nation.

Pray for the world

This isn’t OK. What’s happening in the world is terrifying. People are losing their minds. I am not a second class citizen for using my God-given agency. I am losing my wits about me and that is so scary to me. I can’t work. I can’t sleep. My anxiety is running at 100. I can’t continue. I can’t function.

I implore you to look at yourself closely: if you support removing a person’s right to choose for themselves, you are furthering the divide in this country.

Dear Lord, please help and protect us. If people continue to treat others in this disgusting manner, what will ever happen to us? This nightmare will never end and I need Your help to endure this. Is there Light at the end? Is there a way out?

My body my choice. Until it isn’t.

Wordless Wednesday 8/11/21

My heart is shattered. I love you, my girl, to the moon and back times infinity 🙏🏻❤️

Baby steps

This morning I had my first EMDR therapy session and I’ll be damned if I didn’t go straight to the few moments before the first craniotomy. It was so very much. 🤧

More to come

It’s so hard for me to believe that 10 years ago I began this blog.  Just shaking my head at where the time has gone.  Wow.  I am so thankful I have kept at it this entire decade because I have so much healing and growth to be thankful for!  Oops, ended that in a preposition but haha, it’s my blog I can do what I want.  🙂 What do you think I will be writing about in another 10 years?!  Unbelievable!

We all know this blog began as a place to update on my brain tumor diagnosis and subsequent journey to follow.  But, for my family (in the future) I want to share with them that I am more than my brain tumors.  I hope they know that now, but regardless, I want them to look back on this blog (on my small place on the internet) and see me.

Some of you may know, I am a member of the Church of Jesus Christ of Latter-day Saints.  I come from generations of pioneer stock, but as I read somewhere recently, aren’t we all pioneers just in our own way?  I carry the burden greatly of not being a mother in this life and the generation line breaks with me.  That knowledge kills me slowly sometimes, and it was very painful and poignant this morning during Sacrament.  I was sitting behind a high-school friend of mine, and I could see her sitting next to her husband and a few of her children.  One of her sons was sitting next to her and he laid his head on her shoulder.  Somedays, I am really strong and little things like that don’t bother me, but for some reason this Sunday I was feeling more vulnerable.  (NOTE:  I have been struggling with quite a bit of anxiety lately; I discontinued my anti-depressant – with doctor direction – in May; I have been feeling a lot of fear about v8x – which I may post about in the future) and with dealing with those emotions plus it being a Sunday during Sacrament I am kind a floopy mess right now.  😉  So, here I come to the blog to get all this junk out!

Back to the topic at hand:  I want to share something that I did this morning with my junior companion in Ministering.  (For those who may or may not be aware, Ministering is the new term for Visiting Teaching.)  Life is in session and between trying to schedule a visit between myself, the sister, and my junior comp., I couldn’t get anything scheduled.  So, I grabbed some blank notecards this morning and took them to church.  My junior comp. and I wrote a quick note to the two sisters I am assigned to minister.  I am hoping this gesture will make them feel better, because I think it sure helped me to feel better.

I guess to summarize, I think any small gesture really can go a long way.  For all parties involved.  I am very thankful.

To the GI doctor

Yesterday we had a quick telehealth appointment to review my results of my colonoscopy and EGD. And, I say quick – as you couldn’t get me off the phone fast enough.

What gives? What’s your problem? I don’t appreciate your rudeness. I want to chalk it up to you just having a bad day, but was that it? It sounded like you were in your kitchen making lunch. OK, whatevs. I can deal with that. But, what I’m pissed off about is that you blew me off. The faster you talk to me, the harder it is for me to process. I took notes. I asked questions. But, you said we were going in circles, YET WE WERE NOT.

You have no idea how hard it is to manage life on life’s terms living with Cowden Syndrome and Lhermitte-duclos Disease. You were one of the few doctors on my team that I respected and trusted. And, let’s face it: you sucked yesterday. Not cool, doctor. Not cool. I get that you’re a specialist, and all that. But, I don’t care for how you treated me yesterday. In the past several years I’ve worked with you, you’ve never been this callous to me. Don’t do it again.

Thank you for coming to my Ted Talk.

Weep around the clock

I’m not sure what’s going on with me. I can’t stop crying. Literally. At a moment’s notice.

I want to be strong. I want to be smart. I want to be realistic.

  • Sunday was the 10 year anniversary of my brain tumor diagnosis.
  • Both of my cats are 17 years old and are in very rapid decline. Almost simultaneously.
  • Next week is the 10 year mark of the first brain surgery.
  • I am turning 50 years old next year.
  • I stopped the anti-depressant this past May, with doctor support and direction.
  • I am in the process of going back to college and am having difficulty with a certain department on campus. Also, I was denied financial aid and am in the process of trying to petition to have it reinstated.

This is a very, very short list.

I am so acutely aware of my own mortality and everything around me.

I don’t want to go back on an anti-depressant. I want to feel my feelings yet be very mindful of my limitations.

I am scared the weeping won’t ever stop.

An open letter

To the person I came in contact with earlier today on Instagram. Remember, you were on my account, but that’s no matter. Since you blocked me, I have no way to respond but thankfully I have my own place on the Internet to share what’s in my mind and heart.

1). OK. So, you have the PTEN mutation as I do. You have that listed on your profile, and I can only assume that’s why you followed me. I saw that you noted “brain surgery warrior” or some such thing on your profile. Since you noted that on your account, I only *safely assumed that you must have LDD like I do. (Now, for those that don’t know, LDD is a very rare type of brain tumor associated with Cowden Syndrome. I only asked you about it since I assumed you have the same type of brain tumor as I do.)

2). That’s crazy that you too had a chiari malformation. I too had that, due to the size of the brain tumors in my cerebellum my cerebellar tonsils were pushed down and hence part of the reason why I needed the craniotomies.

3). I wrote numerous times in our chat that I didn’t mean to overstep any boundaries with you. Since you didn’t know what LDD was, and to be honest, may persons living with PTEN mutation DO NOT know what it is either. I only shared what I know. I wasn’t barking orders at you. I am fully aware how overwhelming life with Cowden Syndrome truly is. I know you didn’t *ask for advice, nor was I giving you any,. I was only “chatting” with another person who truly understands how overwhelming the PTEN life is. That you took offense to our chatting, I am sorry for that. I hope that you have great doctors who will keep you in the loop for the health of your brain moving forward.

Blocking me seems childish for some reason, but you do you. It’s a lot to manage! You can do it! I’ll be here if you ever need anything. I wish you all the best!