I just hit the 11 year anniversary of getting diagnosed with Lhermitte-duclos Disease, which then led to the diagnosis of Cowden Syndrome. How can that even be? It came and went, July 18. I was aware though. I can’t imagine there will ever be a time in my life where I am *not aware of the month of July. Day after tomorrow is the anniversary of getting my head cut open for the first time, July 27. I’m stunned. Just stunned. That is some heavy information, you know. Thank you for being here with me. If you’ve been with me from the start or found the blog after, I am so glad you’re here! It means so very much.
Shock and awe
I can’t believe I almost forgot I have a blog. Who am I?
I cannot begin to explain how busy and chaotic life is right now (hi, everyone, right?!)
I changed insurances and while I knew it would be a bumpy first few months with trying to establish care, I honestly couldn’t predict it would be *this bumpy. I am doing it; just like I always do, but sheesh.
Have had and continue to have a butt load of appointments and I am getting overwhelmed. I just decided to postpone my next brain scan until June because I need to breathe.
Is anyone still here? How are you doing?
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.
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.
If my brain tumors don’t end up killing me …..
….it will be the freaking dumb-ass staff at the medical clinics I am forced to interact with! How many hours of my life have I wasted being on hold with them trying to get a straight answer on something?!
That’s it; that’s the blog post.
“Sometimes you have to hurt to heal”
A very dear friend, albeit virtual as of today, just said that to me and she couldn’t be more spot on. Technology, and social media, when used for good can be just amazing! I am thankful.
So, I am here today on the blog to write about an experience I just had getting my thyroid ultrasound. (You know, it’s just bloody crazy that I had thyroid cancer and 2 surgeries and we are *still talking about my thyroid (bed) issues!)
Usually the staff at my hospital, yes most of the staff, know me on a first name basis. (Not kidding.) But this technician was new and I hadn’t ever met her before. She brings me in to the room, tells me the deal (which I have memorized) and begins the exam. She says to me, “So this is the first follow up you’ve had on your thyroid since 2010, right?”
I almost spit up.
I told her this is not my first rodeo and this specific issue alone (the lone random tissue that we can’t seem to find out what it is) I have been dealing with since October 2018. She hemmed and hawed, and said something like, “Well, if you’re concerned about it we can go check on the computer.” I told her that she probably *should go check it out because it does not make sense that all of a sudden the computer/my chart has 9 years of my records missing.
Come to find out, the hospital renamed the test from “Thyroid Ultrasound” to “US Thyroid” or some such nonsense, and she didn’t bother to scroll ALL THE WAY DOWN to the end of my chart.
(In April of this year was my last u/s and there was some “issue” in a lymph node, they thought, and even I know you compare to the most previous scan for comparison. Can you freaking imagine if she compared today’s to 2010 and then on Thursday my doctor tells me, “Oh Heather, there’s a problem.”
I would have lost my ever-loving mind, I tell you.
I am thankful. I am grateful. I am thankful and grateful she randomly mentioned about the “follow up since 2010” comment. Oh boy, I am thankful.
Yes I know I must be responsible for my own health care, but I sure wish I could trust some of these people in this field.
Good evening, or just scratching the surface tonight
Hello friends and family: I know it’s been a hot minute that I have updated! I wish I could say it’s because my life is going smooth and there’s nothing to update on my medical status. 🙂 Sadly, that’s not the case. So, here I am.
I often say the reason why I continue this blog is because *here is my safe place to vent. My few friends don’t want to be burdened with my troubles, as they have their own to deal with. I should probably start a YouTube channel because then I could safely vent to my heart’s content. If I am blessed enough to be married one day I sure hope my companion *wants to help ease my burden and isn’t turned off by them. I am a lot. Rather, Cowden Syndrome and Lhermitte-duclos Disease and Thyroid Cancer, et al. are a lot. But, alas that’s for another day.
The last 2 days have had me running around like a chicken with its head cut off. I spent over an hour yesterday morning on absolutely worthless phone calls. No one seems to do their damn job and I get drug into the middle of it. I have a life worth living, and honestly *none of my energy and time should be
spent wasted on medical people not doing their damn job. Why do I have to call so-and-so to find the answer? Oh, and BTW I called you with the answer and you said I was wrong and I was given wrong information. And this crap goes on and on. And, as of this evening, there still isn’t a resolution of what I am supposed to do and how I am to get my blood drawn with this new doctor. Establishing care with a new doctor is just as bloody hard as when I got diagnosed!
Then today I had O.T. for my trigger finger (thumb) that I had surgery on in August. Today was my 3rd visit and one of the treatments (electrical something) ended up burning my incision and I have 4 blisters on top of the scar. Good times.
Guys, this is a lot.
I have been walking a bit more the last few weeks, but man. I need a vacation. (Who doesn’t, right? Freaking 2020)….who’s up for a road trip to Vegas for the weekend?
the fork in the road
I created this blog 9 years ago to document my life living with 2 brain tumors. Yet, as I sit here this evening I cannot bring myself to write about anything. I’ve never had a filter here, and I am not purposely holding anything back. It’s just that I cannot connect anything in my brain to share. Sadly, things are very active with my Cowden Syndrome and Lhermitte-duclos Disease. I had a visit with the ENT last week to talk about my tinnitus. I could write about that at some point, I suppose.
So, what should I do? Retire the blog? Move entirely to Twitter since short blog posts are more my style (at least I prefer to read short blog posts). Is anyone still here? Would love to hear if anyone’s still here with me. This whole “Content Creator” trend definitely isn’t how this blog began. Unsure if I can make the transition.
10 Days (EDIT: wtf it’s actually 6 days)
In the past 10 days, I have lost 2 friends suddenly to heart attacks. One passed away this past Sunday, and the other one died the Sunday before that.
I am always honest on my blog. This is the only safe place for me where I can be fully open and vulnerable, no judgement from anyone or anywhere because this small blog space is mine and mine only.
I am not doing well with these 2 losses.
Maybe I will write more about these painful and sudden losses of life. These were 2 pretty important people in my life and I cannot see forward.
EDIT: So, I cannot do simple math. Last Thursday I found out a very good friend passed away suddenly. And a few hours ago I found out a former colleague died. That is a major blow to anyone, let alone 2 deaths in 6 days.
May 2, 2020
Day 2 of Brain Tumor Awareness Month and I am 2 for 2!
I was thinking earlier about what I wanted to share today. I decided I would share a bit about where this blog began.
I began this blog the day after being diagnosed with a brain tumor. I knew nothing; nothing about what was ahead for me. Oh, man. I was so naive! I miss that Heather, to be honest. That Heather knew pain, sure. But she was so little then! ❤ I wish I could go back and tell that Heather I will never forget her. I wish I would have hugged her a bit longer. 😦
If you click here you can read my very first post. I am very thankful that I have those early days that I can look back on.
Have a good evening. Thank you for being here.
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