Rare Disease Social Media Tweetchat?

Hi guys.  Do I have anyone here that is on Twitter?  I am really interested motivated passionate hopeful about putting together a tweet chat for those of us connected to Rare Diseases.  I know there is already the hashtag #RareDisease, but for brevity’s sake I registered (hopefully correctly) #rdsm – Rare Disease Social Media, modeled after #bcsm and #btsm.

Please let me know if you would like to take part!  Thanks!

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Daily Prompt [Patina]

As I read through a few blogs earlier, my thoughts were, “What exactly is patina anyway?”  When I first heard that word, it was from a Facebook group of people who love Dooney & Bourke.  Many people would say, “Oh, my bag has a lovely patina.”

I only assumed it had something to do with the leather handles or edge of the bag?  Discoloration?

I still actually really don’t know, to be honest.  🙂

Guest Post – Meet Cora

One of the things I am most passionate about is connecting with others who have this PTEN gene mutation called Cowden Syndrome. I  know I have said this many times, but I only wish SOMEONE would have told me 6 years ago that I am not alone and I am not going to die tomorrow.

Connecting with others through social media has really given me a boost of strength.  I am always excited and humbled when those warriors agree to share their story with me and others:  We have so much to educate the world about!  I have met a few persons who don’t wish to take part.  Of course that is their choice and I must respect it.  I just want to tell the World Internet that there’s this “other thing” that can cause breast cancer, brain tumors, etc. that has nothing to do with the BRCA gene.

I am excited to introduce you to Cora – here is her story (and incidentally, it’s quite similar to mine!)

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When I was an undergrad, late teens and early 20s, I would get headaches for which there are no bad words, no curses strong enough to cover the pain I felt. I would feel a pounding in my ears and in the back of my head; I wept every time. They usually came around mid-terms and finals so I wrote them off as stress headaches, took my 4 Extra-Strength Excedrin—every couple of hours— for the duration of the headache, and carried on. They would eventually go away so I didn’t think anything of it.

From that time till 2002, I really don’t remember having any other experiences, any other headaches but in late 02, my then-husband and I lived in Buda, Texas, and the headaches returned. For some who have allergies, the greater Austin area is awful; I found out that I was one of those people. I took the headaches as sort of a violent reaction to the pollen that was floating around in the air. I started on my daily regimen of 3 or 4 Extra-Strength Excedrin again and things seemed to even out.

I don’t know when it happened but at some point I started waking up at around 4am every morning from the pounding in my head. I’d get up from my bed and tip toe downstairs to sleep sitting up on the couch; that’s all I could do because every time I laid down the pounding would start again. It started to take a toll on me. One day, in the parking lot of the local Sam’s I passed out. Thankfully someone saw me and brought me inside; thinking it was related to Diabetes, they brought me some orange juice and after a few minutes I felt fine. I passed out again a couple of weeks later, in the shower of all places. With the passing out came problems with my vision and I decided to go see an ophthalmologist. The doctor told me that the vision problems were the result of a “swelling of the optic nerve” caused by, among other things, a brain tumor. He ordered an MRI and that’s when everything started.

The MRI showed that I did indeed have a mass in my cerebellum preventing the proper flow of spinal fluid (reason for the pounding). The MRI was on a Thursday and the doctor prescribed a course of steroids for me to shrink the tumor a little so the headaches would go away; headaches went away but I found that “riod rage” is real, it was awful.

Went to see the neurosurgeon on that following Monday and he told my ex and myself that he “really wanted me to go into the hospital immediately because he really wanted to take the tumor out the next morning” so in I went. I seem to remember someone saying that it was 5 centimeters, it was congenital so it had time to grow. I was 32-years-old.

After the surgery, I remember coming to with my ex, my mother, and my son in the ICU with me. Long story short, they’d removed the tumor and I had what I call a “straw” coming out of the top of my head; the doctor wanted to see if the spinal fluid pressure would equalize or if I would need a shunt (I didn’t it turned out). They’d only shaved the bottom half of my head (??) and the top right bit above my eye for the “straw”. My son, who was 6 at the time and will FOREVER be the most brave human being on the planet…ever, told me I looked like Two Face from Batman from the crazy hair—I love this kid forever.

Next morning the doctor came to see me and we discussed what the next step was. He told me that their pathology books didn’t know what caused it but that it was L’hermitte Duclos, a rare benign tumor. I remember that he told me it had begun to inculcate itself into my brain but being benign, he removed only what he needed to to clear the path for spinal fluid.

No one could tell me what had caused it so I made peace with the weirdness of it and that I was alive and, over the next few years, googled the name of the tumor trying to find out what I could. I kept seeing the name Cowden Syndrome come up in the papers I could get free access to on the net.

In 2003, we’d moved back to Baton Rouge and I got in touch with a neurosurgeon in New Orléans to continue whatever treatment I needed. I brought up to him what I’d found and asked if I needed to speak with a geneticist. He repeated what my first surgeon’d told me, that they didn’t know what caused the tumor, but that he’d happily hook me up with a geneticist if I wanted to… I said yes and met Dr. Thomas. I explained what had happened to Dr. Thomas and he took some measurements, asked me some questions, and we eventually did a DNA test to see if my p10 gene was indeed messed up—it was. Immediately we tested my son and he is fine, thank God.

Wondering how the hell I’d stumbled across all of this Dr. Thomas told me that if an anomaly existed in someone’s genes it would come from the father if he were to have kids after the age of, I think, 53. My father was 54 when I was born.

In 2005, Dr. Bhushan, the best endocrinologist on earth, found growths on my thyroid that were too small to be aspirated with a needle so he suggested that I get my thyroid removed to be biopsied. I did and it was benign.

In 2007 I had a spinal fusion. Completely unrelated to CS but it was an hereditary condition that my siblings and I got from our father.

In 2012 the big deal happened. A mammogram showed that I had some tumors in one breast. My breast doctor along with my gynecologist and I decided that it was important, because of CS, that I have both breasts removed. Before the surgery, we found that there were tumors in both breasts. I had the double complete mastectomy with reconstruction and have been fine since.

I am humbled by Heather’s asking me to post what I went through. I ask your indulgence because I am not a writer and I know that mine is, by far, not the worst case of things. If anyone has a question, or news to share, I invite you to contact me at corabauza@gmail.com.

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Enter Title Here on 7/27/17 and also, (GRAPHIC?)

I don’t really know what to say when I see pictures like this.  It makes my stomach hurt a bit.

But it’s me and who I am.  ❤

As I have written before, July is always a heavy and rough month for me.  Just because I ponder so much about where my life was and where I am now.  You can read this post as a refresher, but basically I was diagnosed with a 5 cm. brain tumor in my cerebellum on 7/18/11 and then I had a 13 hour brain surgery 7/27/11.  Then, I had another one a week later 8/4/11.

I know that people talk a lot about scars, what they mean, they give us power or strength to see what we’ve overcome, blah blah blah.  I don’t really have anything wordy or eloquent to say about this scar because to be very honest:  it just plain sucks balls.

I think the more I look at it, the more I talk about it or try to embrace it, it’ll be less taboo to talk about.  I read this tweet a while ago that (paraphrased) said:  You talk about your kids and your marriage and your job.  I don’t have any of that and I talk about my brain tumors and my fear of when I will die and what will happen to me.  I freaking love this tweet and hope you will be mindful of that if your friend has a medical situation they must address.

(NOTE:  Many times, at least in my experience, just because someone has brain surgery doesn’t mean the doctors were able to remove the entire tumor.  Please don’t just assume “Oh, they are fine” once they have recovered from their surgeries.  I believe in some cases a neurosurgeon can remove the entire tumor, but that didn’t happen at all in my case.  Plus, I have another smaller 2 cm. tumor that is encapsulated in my cerebellum.  One of my sincerest hopes is that my life after surgeries and with brain tumors can help educate someone about them and how to better support us.)

I am glad today is almost over.  Soon, or probably it should be already, July 27 will just be another day. I am working towards that….soon.

PS, if you’re on Twitter please follow #BrainTumorThursday.  Thank you!

I’m trying to avoid bankruptcy at all costs. Will you help please?

I created this teespring store to raise money for my living expenses plus to raise awareness for Cowden Syndrome and Lhermitte-duclos Disease.

Take a look at the new shirt I created just now!

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PS…if you know anyone that creates artwork or is willing to donate their time to help me create more shirts, please contact me!  Thanks!

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Click here!

With humble thanks

I think most of the Internet knows of my financial distress – and to those who are important and trustworthy, I don’t keep it quiet.  I do try to focus on the positive, yes.  But, the reality of life with brain tumors and a rare, hereditary cancer syndrome is tough almost. every. day.  (I’m not discounting the hardships other people face.)

But, I digress.

Trying to steer this post from being “too ranty”. hehe

Recently, I was on Twitter and had shared my gofundme link or had tweeted something brain tumor-financial hardship related.  Someone reached out to me and suggested I get in touch with this organization.

I got on that in a hot second.

To be honest, it’s difficult for me to be positive (or hope) for good things to happen because my life doesn’t work that way.  My life is hard.  I’m alone.  I’m managing my life as best I can but forced to depend on my family, which is limited at best.  How I haven’t had to file bankruptcy is beyond me. But I don’t think I can put it off much longer, either.

Anyway.  I contacted Mission 4 Maureen immediately.  By their grace, I was granted financial help.  Thank you Mission 4 Maureen!  Thank you for what you do to help those of us living with brain tumors.  And, I ask you dear readers:  Please visit their website.  If you do Facebook, please consider “LIKING” their page and support them in any way can.

I thank you sincerely.

 

My choice

I know I have the right to choose.  My thoughts, my actions, whether I want to delete a social media account, whatever.

Most days, I try to choose the positive.  I try to choose the happy.  I try to choose the better option.

But today is not that day.

I am thankful to have this small space on the Internet where I can be me.  No holds barred.  Me, as I am.  No filter.

I am beyond annoyed when people tell me, “Oh, you still have a brain tumor?  I thought you had that removed.”

STOP.  Just stop.

If you had made any effort to be a part of my life, you’d know my current situation.  I choose to not share too much on the most common social media platform out there.  I find it more and more comical that people choose to use that for the end-all, be-all, forms of communication.  But, I digress.

Do I need to shout it from the rooftops that I still have 2 brain tumors?  Of course not.  But, I am not sure how to respond; rather, how to hold my tongue, when people respond to me in this way.  I have found as of late that people (even some of my medical team) seem to be judging me.  Judging me, or my honesty, in what I feel and experience every, single, day.  If you’re not living my life, or choosing to ask me, if you find me steering clear of you, you’ll know why.

A brain tumor life is not fun, folks.  The emotional strain, including financial, can be all-encompassing some days.  I will just continue to gain strength to better able choose what’s best for me, until I no longer can.

 

 

 

 

Please help me reach my goal! 

Hi! I’m doing another t-shirt fundraiser to help me with my medical bills. But this will also help me to spread awareness for the rare brain tumors I have AND #btsm (Brain Tumor Social Media). Please consider buying a shirt if you can. This is my 3rd attempt as my previous 2 campaigns didn’t tip because I didn’t reach the required minimum order of shirts. 

Thank you everyone for your continued prayers. I saw a neurologist this morning, which was a wasted 2 hours I’ll never get back. I will write about that soon. Good night! 

Name change, headaches, and food for thought

A few days ago I tweeted out that I need to change my blog name to, “Headaches for Heather”.  Because headaches.  All the freaking time.  And dizzy problems.  Added to memory problems, and the list goes on and on and on and on…

I put on a good front most days.  I have had 5 years of doing this so I am getting pretty good at it.  But, I’m tired, you know?  I am freaking tired.  I am tired of having to “act like I feel well” when some most days I am exhausted.  No one sees me on the inside, no one takes the time to ask how I’m doing, because I know they don’t “really want to know”.  Just the pleasantries.  So I do the pleasantries in response as best I can.  I am not bitter, just have accepted what now is.

However, when I am feeling a bit lonely (like I am tonight), I wish I had someone to call.  I don’t write this for pity from anyone, just documenting my life with two brain tumors and a rare disease and sharing my story in my little space of the Internet.  The reality is I don’t have anyone to call.  No one to have dinner with, go shopping with, etc.  And I have to pause and wonder why that is?  I had friends before diagnosis, or at least I thought I did.  Where are they now?  Have I honestly pushed them away?  I am always mindful of the things I now disclose to certain people, and even if others do bring up questions about my health I usually limit my responses (although it does depend on certain circumstances).  So, that leaves me the questions:  Did I bring this isolation upon myself?  Or did those once around me leave because my life became too hard for them to continue to share it with me?