I have been awake since 2:30 AM this morning with a pretty big migraine.
In about 12 hours I will sign the paperwork to file bankruptcy.
I have been awake since 2:30 AM this morning with a pretty big migraine.
In about 12 hours I will sign the paperwork to file bankruptcy.
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!)
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 firstname.lastname@example.org.
I have a virtual friend who has offered me her expertise, advice, support, on this whole disability mess. (THANK YOU!)
I chose not to read the judge’s 23 page denial because it will only make me angrier and more suicidal.
My virtual friend was kind enough to read the denial for me.
In part, the denial states that I was “fine and happy” in the courtroom. (I was trying to be professional and not lose my marbles. I almost did cause a scene at the end and I held it together because I was afraid THAT would be held against me.)
Over the years I have told my doctors that “I’m fine”. The judge held that against me in part of his reason to deny me.
(I have only told my numerous doctors “I’m fine” because I AM TIRED OF TELLING THEM ABOUT MY PAIN ALL THE TIME. MY CONSTANT HEAD PAIN, CONFUSION, MEMORY PROBLEMS, FINE MOTOR SKILLS PROBLEMS, ANXIETY, DEPRESSION, ETC.) But, that doesn’t mean over the 6 years since my life got turned upside down I never told ANY doctor I am in horrific pain? I DID!
The advocate told me if I chose to appeal then my case would go back to the same judge. My virtual friend said that in the denial it says that it may not go back to the same judge.
So kids. If you’re in the process of filing to disability, don’t EVER tell any of your doctors that you are fine. And, don’t find someone to “help” you online.
…to say, “I’m tired. It’s hard. I am scared. I am alone. I am struggling” because, let’s face it. That’s pretty much the entire theme of this blog and I have pretty much got that covered. If it can be said, I probably have already.
But part of the reason I continue this blog is so that if anyone happens to find it who’s tired, scared, or lonely too, will know they aren’t alone.
Here’s some things going on here as of late:
I can go on. But, I won’t. That’s enough for me. For today and hopefully tomorrow.
When you suffer from chronic headaches, it can be a blessing and a curse at the same time. A blessing because you have to learn how to slow down and take time for you. A curse because the pain of the headaches can (and usually does) interfere with your life’s plans.
And by “you”, I mean “me”.
As many of you know, I have had chronic and severe headaches since my brain surgeries in 2011. I assume the migraines are worse and more frequent as a result of the surgeries. But, I also suffered from migraines before my diagnosis. I was horribly sensitive to light, sounds, scents, etc. And still am. I am a very seasoned headache sufferer and have been around the block dealing with them. A migrainuer, if you will. 🙂 I am dealing with, adapting to, and accepting the pain of my migraine headaches. It’s very tough most days, but I try to power through. However…
…luckily for me, along came Axon Optics.
I wasn’t sure what to expect as I’d never been able to buy specific “Migraine” glasses before. I’ve always had to use the darkest sunglasses available to me. While I would recommend these glasses for certain potential migraine situations, they weren’t a cure-all for me.
I had very high hopes I would be able to use these glasses outside, in the sun, while watching sports or walking. Unfortunately, the migraine glasses did not work for me in these circumstances. The lenses were not dark enough for me and it was quite uncomfortable to wear them outside. I had no choice but go back to my regular dark sunglasses for outdoor activities. Another negative thing I found is that when I wore them inside and had to look far away at something, it made me a little dizzy and the thing(s) I was looking at were blurry. This happened once while I was in the grocery store looking across the aisles. I knew immediately not to do that again.
BUT, I did notice a huge benefit of these Axon Optic glasses on more than one occasion. I was at dinner with my mom and noticed I was beginning to get a migraine. I usually have my “go-to” things I do to try to stop the pain, but since we were at dinner I was a bit stuck. I put on my glasses and after a bit of time I noticed my migraine was significantly less painful.
When I am at church the room lights normally bother me. When I wore the glasses I noticed a huge relief of eye strain and I was immediately at ease. This is a big deal! I teach often and there have been many times over the years I’ve had to teach through a migraine. These glasses have been a lifesaver to me.
There are several styles to choose from, and I chose the Jura frame because I thought it looked the most like the “Nerdy” glasses that seem to be popular lately. I was a bit concerned that they wouldn’t fit me properly, as there weren’t any measurements required or tips on which to lenses to choose (this was true at the time I ordered. Their website has options now of frame colors and different lenses.) All in all I really like them and think they look “OK” on me. The glasses are very well-made, and don’t feel cheap or flimsy. Included with my glasses was a hard-shell black case with “Axon optics” written on the front.
The bottom line is that I would recommend these glasses to anyone who suffers from migraine headaches. You might need to see how they best work for you, and in what circumstances. I didn’t stop getting migraine headaches, but I noticed Axon Optics migraine glasses did work in some cases to reduce my pain. That’s a win in my book!
Since diagnosis, I’ve come to realize how valuable my time is.
How come I didn’t have this mindset before? Did I just live my life with my head in the clouds? Not realizing ANYTHNG?!
Regardless, I know it now. I’m fully aware and invested in what I choose to do, and where, and with whom.
This afternoon I had had a busy schedule filled with a couple of medical appointments. This morning, a little bug in my ear told me to call the office to confirm my appointment.
Well, surprise surprise! The doctor isn’t in the office for the entire month of October. Did anyone call me to reschedule? Heck, no. Did anyone give a rip that I almost went all that way for nothing? Believe me this: Had I driven all that way come to find out my appointment had been canceled, I would have lost my noodle in that waiting room. Believe me.
If I choose to waste my time, that’s my decision. Not yours! If I choose to read a book, walk around the block, mindlessly shop online…that’s all me! You do not get to waste my time. You do not get to pull me around by the neck forcing me to do what you will.
And, you know what this taught me? I now must take more of my valuable time and call each and every single medical appointment before I go. To make sure my appointment hasn’t vanished. Ugh. Who has time to remember to do that?!
Lest my entire day be a waste of time, I had sushi with a friend of mine. Now, I’m playing on iTunes and importing old music (Grease, Fantasia 2000, Phantom, Beauty and The Beast – so much music I had forgotten about!)
Pink Ladies for life!
I had so much to write about yesterday. My walk and how much I hate it, yet I see the purpose because it challenges my balance so much. How I have been told by a few people lately, “But you look so good!” While that’s a kind thing to say, it doesn’t negate the trials and terror I deal with behind closed doors.
And then waking up to a pretty big headache, unlike one I’ve had in a long while, just ruins my entire
day. (Morning. I am going to work hard so that it just ruins my morning).
As I’ve said many times, there’s quite a bit to manage with brain tumors and a rare disease. Imagine if I didn’t have them…how much “easier” my life would be!
Yesterday I had an appointment with a new neurologist.
Now, before I write about my TWO HOUR wasted appointment, let me preface this by saying, “NO ONE TOLD ME THIS DOCTOR WAS ONLY SUBBING FOR ONE WEEK.” I would not have wasted his time, OR MINE, by seeing him yesterday if anyone had told me this. My time is valuable, whether you think it is or isn’t.
But, no. Does anything medical run smoothly in my life? Again, no.
Does most anyone do their jobs at the clinics I attend? (Well, some do; I will say this.)
I am still so mad about yesterday and it’s been a whole 24 hours since it happened.
So, I am waiting in the exam room and in walks this doctor. Dr. A? I don’t even remember his name. Seriously. He sits in front of me and starts to ask me a few questions. I can tell by his questions that he didn’t look at my records. He continues to ask some basic headache questions, and I interrupt him. “I have 2 brain tumors.” And, he kind of reels back, in shock. I told him I have “Lhermitte-duclos disease”.
ME: “I don’t know if I pronounced it properly. I’ll say it again. Lhermitte-duclos disease.”
HIM: “Is that like Cowden Syndrome?”
Oh my freaking gosh. I cannot. Seriously. I freaking CANNOT. I don’t care if you’ve never heard of it. I don’t care if you never saw it in your training. I am an established patient at this clinic. YOU LOOK AT MY FREAKING RECORDS BEFORE YOU SIT DOWN WITH ME.
I wanted to clobber him.
He then asks about my symptoms: I tell him about the headaches, the dizziness, my hyper-sensitive hearing, my decrease in my fine-motor skills, etc. And, we go through them one by one. He’s firing questions at me, and I literally feel like I am before a firing squad. I have NEVER experienced anything like this before. And, trust me. I have been around the block. I have seen many, many, doctors. This one takes the damn cake.
When he’s finally finished barraging me with questions, the first thing he says to me is, “You have migraines.” My response, “No duh.”
Well, not really. But, I wish it had been.
I wish I would have said, “Do you mean migraines as in something different from headaches post-craniotomy?”
Then he goes on and on about changing my meds, that I have carpal tunnel syndrome, mindfulness, and all this other crap. I was expected to have a STAT EMG in like 2 weeks. But guess what? I have a medical appointment already. And, I cannot change that appointment because it will be weeks before I can be seen there again. You know how THIS clinic thinks they are GOD and all revolves around them? Well, guess what. Every other clinic I go to think the same thing. And I have learned that once an appointment is set, it’s set. I cannot change the appointment I have previously scheduled. This decision of mine DID NOT go over well here. But, sorry Felicia. What do you expect me to do? I will not sacrifice the rest of my medical status for you. Period.
I would totally be on board with all of this. But, here’s the kicker: He wants all these changes but then I HAVE NO NEUROLOGIST AFTER HIM TO FOLLOW UP WITH! What if I have withdrawals coming off the Topamax? What if I can’t tolerate the new meds? WHAT KIND OF DOCTOR makes these HUGE changes and then would hang me out to dry? This office hopes to get a new neurologist sometime in September.
And you know what? I hope so, too.
I have to work, because I need money to live.
I can’t work, because the headaches and pain and dizziness and memory problems and on…
But I have to work to live.
Living with brain tumors and a rare diseases costs money.
But I don’t have any.
Because I can’t work. But I have to work.
Because I have to live.
WHEN WILL THIS CHANGE?
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?