Frustration X 1,000,000,000,000 %

I’m so frustrated right now I could spit nails.

I got a job a few months ago.  This is great.  This. Is. Great. However, I now have insurance.  That costs me $300/month.  I won’t go on about that right now.

What I will go on about right now is the damn paperwork and hoops that a medically involved person must go through.  Why?  What the freak for?  Just to see A DOCTOR?!  You know, the doctor(s) I have been seeing for 8 years? I’m not a normal person who gets sick once a year and can go to the doctor then.  I am the person who must go to the doctor, usually, every 90 days.  I have 5+ specialty doctors I must follow up with, but thankfully am established with them. So, whew.

Why do I have to do everyone else’s damn job?  Why must I call the primary doctor, then the insurance, then the specialist, then back to the insurance to ensure that they are all communicating and are on the same page?  Who the hell has time for this crap? I’ve made/received 10 (!) calls just today on getting authorizations sorted out and making sure things have been “coded” correctly, and finding out which actual doctor will do the correct authorization?

Aw, hell.  It’s only 3 PM and I’m done and over this b.s.

I have 2 appointments next week – Neurology and Endocrinology.  What do you think the odds are that I can actually see get these appointments authorized?

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PS, what happened to spell check in here?

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#HugeNews

I saw a Neurologist yesterday!

I won’t bore you with the details of why I stopped seeing one earlier, blah blah blah.  Good news is I now have one.

I’m kind of processing everything still – all I have really ever wanted is for a Neuro to “have eyes on me” as my brain tumor (and brain surgeries) symptoms are progressing.

Granted, adding another doctor to my team may seem kind of odd, but this works.  🙂 I have said numerous times to numerous doctors that I don’t expect anything to change. I know there are no miracle drugs to help me manage life now and I sure as hell AM NOT having another brain surgery.  Ever

Until next time!

Happy (late) Halloween

I hope you all had a safe, fun, night last night!

We seemed to have less trick-or-treaters, did anyone else notice that too?

Flavored Tootsie Rolls for the win! #amirite?

Remember the whole “neurologist fiasco” from a few weeks ago?

This morning, I have an appointment with a new one.

I’m cautiously optimistic.  Well, not even optimistic.  Just cautious.

I just want/need another pair of eyes to see my brain, that’s all.  Someone, somewhere, should give a rip that I have 2 rare brain tumors in my cerebellum.

Let’s see……………………………..!

Happy First of November to you too.  I want to go to Target today!

Mid-October?

Wow.  I can’t believe this month is already 1/2 over!  That’s so crazy.

I was looking at my calendar this morning and was a bit overwhelmed with all I have going on:

  1. Colonoscopy and EGD
  2. New therapist appointment
  3. Endocrinologist appointment the end of the month
  4. I had 2 different Neurology appointments scheduled, and they both fell through.  (It’s mildly concerning to me since I am living with 2 brain tumors and have had 2 craniotomies.  But, I digress.  For another post.)

I guess my point is that I’ve been forced to learn how to advocate for my health.  And, that’s one of my biggest takeaways since diagnosis of the brain tumors.  I get to share my experiences with you, and hopefully at least 1 thing I’ve experienced these last 5 years may be of some help to you.  To someone.  Somewhere.  That helps me feel that none of my medical experiences have been for naught.

I could tell you horror stories, and rest assured, I will continue to share them.  (Gross negligence of privacy issues to start.)

But, not tonight.  I am still traumatized from the colonoscopy and EGD last week.  I’m still irate for not being able to see a neurologist.  However, the main thing is even though I must endure numerous screenings and procedures (and those aren’t going away any time soon), I will not tolerate unacceptable behavior.  I will not waste my time waiting in exam rooms for doctors who don’t listen to me.  This is my life, this is my health; if you’re not meeting my medical needs, I refuse to endure and I will move on.

I never would have done that in my previous life.  I would have just gone along with things, because I had to.  Well, you know what?  I don’t have to do anything.  I don’t have to do anything I don’t want to do.  Has the diagnosis of Cowden Syndrome and Lhermitte-duclos Disease made me stronger?

Hmmm….

Doctor, Doctor, can’t you see I’m running, running…

I was going to sit down and tell you about my GI appointment last week.

But then I got a call from the Dermatologist and received some news on a skin “issue” I have.  I thought she said at my appointment a few weeks ago, “Eczema”.  Turns out it could be a type of dermatitis, or some type of melanoma and I may need a biopsy in 2-3 weeks if it doesn’t clear up.

But I am not going to write about that after all.

You see, I haven’t been under the steady care of a neurologist for quite a while.  That scares the crap out of me.  Considering I still have 2 brain tumors.  But.  Maybe it’s fine, I don’t know.  I just don’t feel comfortable with it.  And, if there’s anything I’ve learned since diagnosis and the all the surgeries I’ve had is that I GET TO FEEL COMFORTABLE with what happens to me and my body.  My choices.  Which scans.  My decisions.  Which tests, etc.

I asked my primary doctor about a referral to a neurologist in one of the neighboring cities.  One office has their first available appointment 23 August 2017.  The next office’s first available appointment is 2 May 2017.  WHUT. THE. ACTUAL. FREAK?!

So.  My options are quite limited, don’t you think?  I’m grateful and so blessed to have insurance, but with the type that I do have, I often get pushed to the bottom of the barrel.  I’m terrified that I’ll suffer and have unnecessary complications because of that.  I’m not sure what’s weighing more heavily on my mind now…the dermatitis thing that may not heal, or the lack of someone watching my brain and my neuro symptoms.

Let’s see now, when’s my next doctor appointment?

 

 

Let it freaking go

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”.

HIM:  “What?”

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.

 

If you don’t have a brain tumor, then you have no opinion

You know, I had a hard enough time managing my life before.  And now, the added stress of managing doctor appointments and everything else that goes along with that?  It’s a wonder I can keep things straight.  Usually, I do.  For the most part.  But sometimes, things fall through the cracks.

Like today, for example.

I forgot to mention to the neurologist this afternoon one of the main symptoms I have dealt with that is getting worse.  I have some profound problems (to me, at least) with my fine-motor skills.  My mom overheard me talking with the office just now, and began to say some hurtful things to me.  “Why didn’t you write it down?  How could you forget?  Didn’t you make a list?”

Guess what:  I KNOW ALL THIS STUFF.  I know I should make lists, and usually I do.  I don’t plan to forget things, but sometimes IT HAPPENS.  Does anyone think that by SAYING THESE THINGS TO ME, you are telling me something new?  Something I didn’t already know?  Like, OH YEAH.  I never THOUGHT to write it down.  Come on.  Really.  I don’t need anyone pointing out things to me that I am fully aware of already.  OK?  Move along.

My extended family was around, so they heard all this.  Once again, I feel like the bad person because I am different.  I could have kept my mouth shut, but I didn’t.  I told my mom that she was saying some very hurtful things to me.  I work very hard to NOT BE DIFFERENT, then when something like this happens, it just exacerbates my feelings of isolation even more.  And now, I feel like crap.  My mom will say nothing of this.  I will not bring this up, because she will say I am overreacting, or taking things too personal, etc.  That may be the case to a point, but I still have feelings and they are important and have value.  I guess I need thicker skin.   But, why can’t people be more mindful of what they say?  I know that’s a long-shot.  But, still.  🙂

This neuro and sudoku life

Tomorrow I finally get to see the neurologist.  It’s been several months since I had an appointment.

Sometimes, I feel like I am just complaining about the things going on with me; however, she needs to know.  I know there isn’t a magic pill, nor another surgery (at least I hope not) that she can give me to make this stuff go away.  These symptoms are just effects of brain surgery (2) too many times.  You know?  Dizzy spells happening more, headaches happening more, trouble walking and problems with my fine motor skills are happening more.  Just cerebellum “stuff” happening more and more.  My life will always be laced with brain stuff.  And, side note:  I cannot think of any other adjectives besides “stuff”.  Quite annoying!

My only resources are to “tuck and roll”.  Tuck and roll hard. 

And, probably more sudoku.

My week

All in all, this week was pretty typical for my chronic medical situation. I wonder if there will ever be any stability with Cowden syndrome and Lhermitte-duclos Disease?

Monday:  I had an appointment for a PET scan and a PEM scan.  I wasn’t clear exactly what was going on when I got there because I thought I was just having a PEM scan, which I affectionately call a “glorified mammogram”.  I arrived at 8:30 and was shown to a room that had a recliner in it.  I thought, “Hmmm.  This is already unlike any other medical thing I’ve ever had!” and the technician gave me the instructions.  First, she had to check my sugar (thankfully I had great veins that morning!) and it was 102.  I asked her if that was high, and she said anxiety can make it go high but it wasn’t too bad.  Whew.  Next, she brought in the radioactive sugar and said that it was time.  Dun, dun, dunnnnnn.  I didn’t even have a clue what that meant!  Would I feel anything?  Would it hurt?  She put it in the IV and then said I couldn’t move, to rest on the recliner.  No talking!  No playing on my phone, no reading, no nothing.  Just relax.  BUT GUESS WHAT HAPPENED?  I totally had to go to the freaking bathroom.  I could not relax for 30 minutes at all because I was worried.  Plain worried.  The technician got a bit snotty when I told her I needed to go (her response was, ‘Well, I’ll give you permission if you must, but we can’t wait because the sugar is already decaying’…Whut the freak?)  Anyway, I somehow made it through the 30 minutes and when she came back into the room and said, “You can move now” it took all my restraint to not r u n to the bathroom.  #RealTalk.

After all this, I had to wait another 30 minutes to percolate, I guess.  🙂  Was finally taken into the PET CT, which wasn’t a big thing because thanks to Chuck (what I used to call the brain tumor), I’ve had plenty of them.  Since I was still radioactive right after this procedure was the PEM scan, but can you believe the test was done at the end of a hallway?  There were people (read: a MAN!) walking into another room so he could totally see me taking my Dairy Queens out!  There was this accordion barrier thing to “shield” me but it was still totally a wonky set up.  I had to endure 16 minutes of this on each “side”.  Weird.  Are you with me?  (As it stands right now, I haven’t heard from the surgeon.  No news is good news, right?)

When I got home I had to stay away from my nephews for 4+ hours, then as I was detoxing I got 2 huge migraines.  Just crazy talk, you know?

Wednesday:  My neurologist has been on medical leave.  Not a big deal to me, because for the most part I’ve been stable.  Ha.  But I have weaned off the gabapentin and lowered the topamax because I really wanted to know what life is like not on those meds.  I knew the gabapentin was for pain and the topamax was for migraines.  And, I hadn’t really been having either (for the most part) and since Dr. D was on leave, I just was going to take care of my biz like the champ that I am!

I called the office on Tuesday and left a message so it could be documented that I had discontinued the medication.  Yesterday morning I get a call asking if I can come in at 2 PM to see the neurologist they have filling in?  Um, sure.  I guess.  When I met this doctor, come to find out she knew the doctor who performed my craniotomies!  That was kind of a nice thing.  But, she told me some things that were a tad disconcerting:  I did have an abnormal EEG after all (I could never get a straight answer from Dr. D about this), and I must take the Topamax twice a day because I am at risk for seizures because of the scar tissue in my brain.  Once a day (I had taken it just at night) is not enough.

Today:  I have PT in a few hours.  I’m nervous.  I wonder if it’s going to be awkward like it was a few weeks ago.  Let’s hope not.  I hope we can continue to have a good working relationship.

OK dear readers, this was my week.  How was yours?

Mas Neuro

I brought my mom to my neurology appointment this morning.  Moral support I guess.  But mainly I wanted another set of ears in the room with me, because, let’s face it.  Brain stuff is hard for me.

I like this doctor a lot.  I met him during the 3rd hospital stay when they were trying to figure out what was causing my horrific headache after the 2nd surgery (hello?!  Is this thing ON?!)  Anyway, when he called me last month he told me I had an “abnormal EEG”, but this morning he seemed to tell me different information.  So, short-term I guess that’s GOOD, but here’s what I gathered from the EEG results:

Just because I didn’t have a seizure during the 30 minutes I was being tested, doesn’t mean I won’t possibly have one sometime in the future.

He said I have “brain irritation”, and yep.  He’s right.  I’m irritated so I’m sure my brain must be, too, haha.  I had to come clean that I wasn’t taking the anti-seizure medication consistently as he asked me to last month; and since we don’t really know what’s going on with my cerebellum, he increased the Topamax even more.  The thing that bugs me is that I haven’t ever known life post-surgery without Topamax or Gabapentin, and eventually (hopefully!) I would love to see how my brain does not on those medicines.  But, as time goes on, I’m thinking that’s off the table.  😦

You know how they say, “Accept the past”, or “Let the past go”, blah blah….well, no one actually says HOW TO DO THAT.  I’m just expected to know how to do this brain tumor stuff and let’s face it, I don’t do it well.  My lack of balance and (I’m now noticing) motor control AND ringing in my ears is starting to really take a toll on me.  Yes. I can walk and talk.  I am so thankful for that.  Very thankful.  But it’s still really hard.  I’m on this road alone and it’s very overwhelming most days.