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.
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!
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?
Isn’t it amazing how things can change so much in 48 hours? Even 24 hours?
So a few days ago I was panicking that I might have cancer in one of my lymph nodes and that this new 5 cm. mass in my right thyroid bed was b a d n e w s.
I had the CT scan Friday morning and my Endocrinologist called me late morning. He said, per the Radiologist, that he DOES NOT need to biopsy the mass. I’m guessing fatty tissue? Is that part of Cowden Syndrome? I actually think it is, at least to a point. But, as that fatty tissue grows, then what?
Anyway, and evidently there is NOT any metastasis in my lymph node. The ultrasound technician thought it was, or theorized there was. Regardless, I have that on the top of my list of things to ask my Endo. next week. WHAT the freak is/was in that lymph node then?
So, taking small victories as they come I am breathing a sigh of relief.
PS In the midst of all this whirlwind I had decided to put my Twitter and Instagram accounts on a hiatus of sorts. But I had forgotten I had a previous commitment on IG so I have brought that one back.
New! New! New!
Hi friends and family:
I pray you are safe and well. I have been feeling stagnant this week so I decided to create some new merch, with the help of a social media friend! I will find her website and link it here. 🙂
Please click here to check out my new shirt! I am so excited to share it with you. If you’re able to, during the unprecedented time we are living in, please consider buying a shirt. It will help me in many ways. Thank you!
Almost a month’s time
I can’t believe it was about a month ago that I passed out and hit my head. It seems like it happened yesterday morning. I haven’t slept in my bed for the past several weeks because sadly I get pretty moderate anxiety at night thinking it’s going to happen again.
Trying to get the EEG scheduled; frustrating as hell. Last week I also spent 35 minutes on the phone (on hold) trying to schedule an appointment for podiatry and to see a hand specialist: and after the 35 minutes I wasted I still didn’t have an appointment scheduled for either!
Positive note: I found 2 Christmas CD’s at a thrift store and am in the process of trying to get the music on my phone. One CD synced OK but the other one will not. Going to try again in the morning.
PPS don't forget to follow me on Twitter and Insta!
Guest post – Meet “C”
Thank you Social Media for connecting me with other warriors who are living and thriving with Cowden Syndrome. I am pleased to introduce you to “C”
First I wanted to say thank you so much to Heather for being so passionate about making sure that awareness is spread about genetic rare syndromes and diseases and such. It is such an amazing thing that she is doing and helps so many people!
So hi! My name is “C” and I am a medical weirdo (my own term for myself) I have Cowden Syndrome, an AVM in my left forearm, and as an offshoot of my Cowden Syndrome I have recently started a journey with Thyroid Cancer, and I have Generalized Anxiety.
I was diagnosed with my AVM when I was in fourth grade after going to a friends birthday party, playing dodgeball with soccer balls which is never a good idea. I near the end of the game I was hit on my left forearm with a soccer ball, my left arm swole up and I ended up going to the ER that night. Needless to say none of the doctors I went to that first year had any idea what was going on with my arm, one thought it was a type of fracture that would’ve shown up in a couple days, another thought it was some overexertion of a swelling thing (I don’t exactly remember what it was called), and another one thought it was some cancer like thing. And it wasn’t. I eventually was diagnosed with an AVM and then a few years later after growing a thing in my foot I was finally diagnosed with Cowden Syndrome.
And as a result of all of this, I deal with Anxiety on a day to day basses, which I eventually got on meds to help me with.
A couple of months ago my doctors wanted to do a baseline scan of my thyroid because people with Cowden are at higher risk for Thyroid Cancer. Soo they did the scan and found two nodules on my Thyroid (one for each lobe/side). They did a Thyroid Biopsy (which ends up feeling like a huge bruise for a couple days afterword), and a couple days ago we got the results back. Turns out I have cancer, but it is undetermined how much cancer there is or what to do with it. A small part is definitely cancer, another part definitely not cancer, then the majority of it is something they can’t tell whether or not it is Cancer because of the fact that my P10 is the only thing they are picking up.
Sooo, now that I’ve told my story I wanted to just say that if you are one of the really cool people who have a genetic rarity you are not broken. Just because you are different from everyone else and can’t do some stuff that others can doesn’t mean that you are less than or unworthy of being a human being. And I know some of you probably wanted to punch me for the first sentence of this paragraph but you are really cool! You have this unique point of view that could maybe help someone else, and you have this way of thinking that helps you be empathetic to others who are struggling. So you really are a cool person!
If you would like to connect with “C” – her Instagram account can be found here. ❤
Do you know that this month is Brain Tumor Awareness Month?
Do you have your gear yet? (hint hint!)
If you follow me on Instagram you’ll know I promoted a post to (hopefully) get some traffic and potential
customers friends who would help me in my advocacy this month. If you’re new here, I am living with 2 rare brain tumors in my cerebellum called Gangliocytoma.
Take a look at this link and if you feel so inclined (please!) to purchase a shirt I will be donating 20% of the proceeds to the National Brain Tumor Society. I initially created these shirts to advocate but also to help me with my daily living expenses.
I’m forever playing catch-up with my life
Where or where to begin?
I’m up early – couldn’t sleep – and decided to jump on the ‘ole blog because life is coming full force and at times, I can’t breathe. Writing, sometimes, helps me breathe.
Here’s a quick recap on the last few months:
- In January, I lost my rescue dog. I loved him for the past 8 months and he forever changed my life. I was utterly gutted at his loss, but it was time. He was ready although I never was, nor ever will be.
- Finally got the referral to a neurologist (that was desperately needed!) and was told I have (the beginnings of?) nerve damage in my feet. From the brain tumors? The brain surgeries? Huh? What else now?! I had a nerve test last month and it was hell. The dot and the period.
- Do you remember the thyroid issues I have dealt with since last October? Last month also, I had another fine needle biopsy on my (empty) thyroid bed. (So, let’s see that’s – ultrasound/MRI/fine needle biopsy X2) – and there is STILL NO ANSWER AS TO WTF IS GOING ON IN MY NECK! I
hadhave elevated thyroglobulin and my doctor thinks maybe it was a technician error? Yet something is growing (I guess?) in my neck but it’s not a lymph node or thyroid benign or malignant cells? Ugh, I’m beyond exhausted.
- Haven’t filed BK yet. Found out there was some paperwork I need to submit to one of my creditors.
- My anxiety is getting pretty riled up and I am struggling with even the simplest of daily life tasks.
- I deleted my twitter account. I don’t know why; just felt like the right thing to do. Maybe I’ll be back one day? There are so many wonderful things about twitter, and to be honest it just doesn’t feel right watching Days or Gutfeld w/o tweeting!
- I have this great urge to purge (LOL). Probably the shame and anxiety about the BK.
So, what else folks? Do I continue this morning to wallow in shame or do I put on my big girl pants and get crap done today? I’m sure you know what I want to do. Let’s see if I fight against my norm and do it different.
It’s been a while, or so it seems. I have been a bit more active on Instagram & Twitter lately, because it’s just quicker plain and simple.
I’m struggling. Hard.
And you know what blows extra hard sometimes? What can I blame it on? How can we know? Is it my brain tumors? Thyroid cancer – and lack of thyroid hormones therein? The hysterectomy and lack of those hormones also? My regular old depression and anxiety? The effects of having my cerebellum scrambled a couple of times?
I am severely constipated. Unlike anything I can recall in years. Doing “all the right things”, and it continues to get worse and a few days ago I about passed out in the bathroom. And yes. I am drinking lots of fluids – water, coconut water, etc.
Additionally, I am extremely exhausted. Again, unlike anything I can recall at least since my thyroid cancer in 2003. I think some people think I’m rolling my eyes at them, haha, but I assure you I’m not. I just literally cannot keep my eyes open. Every time I blink (which is getting longer and more often) I am just trying to will myself to be coherent and uptight upright.
Had the thyroid MRI last week and waiting to hear.
Welp. I guess the good news is I’m not dead yet! I have to file bankruptcy at least before then.