Connect the dots

Sometimes, it’s fun to look back at from where I came.  My real medical life began in 2003 when I got diagnosed with thyroid cancer.  I hadn’t really been all that sick prior to that.  Little things here and there, had my tonsils removed when I was 19, that’s about it.

Obviously I can connect the dots now and see how most everything from birth-2003 and then 2003-2011 screamed Cowden Syndrome, but whatev.  Did you know that thyroid cancer is one of the “signs” (my words) of Cowden Syndrome?!

I saw the endocrinologist this week.  With all the ones I’ve been through, not including one specific one who was my doctor for EIGHT YEARS, this current one is pretty good.  I’ve had better (see previous sentence) and I have seen much worse.

People can’t seem to leave my TSH alone.  It’s either too high; too low; too whatever and we have to worry about blah blah blah.  I just KNOW how I feel when my TSH is a certain number.  Can’t you all leave me alone?  (NOTE:  Mild sarcasm.  I get it.)

I saw Dr. Endo this week.  He loves my TSH at 1. something.  I hate it.

I love my TSH around .10 or .20.  But, he doesn’t.

Anyway, more blood work.  Checking of my T3 or T4 or something.  I don’t know.  Then, I see Dr. Oncologist in the next weeks to check The Ladies.  

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What’s new with you?  🙂

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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….

I would like to keep as much of my blood as I can, thank you!

What with all my surgeries these last few years, I am a bit partial to holding on to my blood.  I mean, I just am.  I realize that Cowden Syndrome comes with a lot of blood work (including managing my Vitamin D levels) and the other labs vary from time to time.  I have had to learn to be an empowered patient, or engaged patient, or electronic patient, basically any appropriate (medical) word beginning with “E” and in front of the word “patient” would be me.  🙂  I have to add that I still hate identifying myself as a patient though.

This morning I was due to get my levels of Vitamin D checked. I am still unclear why it has been so wonky since before diagnosis, but it has been quite tough to get it stabilized.  (At one point I was on 150,000 IU’s of Vitamin D a week!  #TrueStory.)  Before I knew about brain tumors or rare genetic disorders, I remember that my Vitamin D level was 28.  I have been forced to learn a whole lotta stuff these last few years I know it’s better to have a higher level (but my current endocrinologist doesn’t want the level TOO high because then I am at risk for kidney stones, or something.)  Anyway, it’s been a very fine line getting this Vitamin D level worked out.

About a month ago, thankfully one of my doctors checked my level and it was 34.   Before this test, I remember it was almost 50.  Why the change?  What the heck is going on?  Thankfully I got ahold of the endocrinologist and he told me to take 50,000 IU once a week and then get my blood checked a month later (which was this week).

I went to the laboratory this morning and joked with the front desk woman that I “only had 1 lab this morning”.  She said, “Oh yeah, I know, huh.”  (NOTE:  The hospital staff in Radiology and Laboratory know me by first name.)  I told her which lab I was having done this morning (VITAMIN FREAKING D!) and which doctor.  I thought she was clear.  I was clear.  Come to find out she was clear as mud.

When I went back with the phlebotomist she took 5 vials from the drawer.  I thought it was rather odd to have so many, and mentioned it to her kind of matter-of-fact.  She then mentioned, “Cortisol (something)”, and I told her:

Me:  We aren’t doing those labs today.

P:  Oh, you’re not doing labs for Dr. B?

Me:  NO. I TOLD the woman up front that the labs were for Dr. S and ONLY Vitamin D.

P:  Hmmm.  OK, right?  OK, we’ll cancel.

Me:  I EVEN joked with her that I only had 1 lab today!

So the point to my story is this:  People make mistakes, people are human.  I get that.  But I never knew how much I had to be on top of my game before this life with 2 Rare Diseases.  Before, I would have just let her take those 5 vials of blood and never would have been the wiser, never asked a further question about it.

Now?  I am all about asking all the questions I want and need to.  And, everyone else better just deal with it.

 

Blogging refresher

I have been a slacker lately.  That’s not for lack of needing to write, or for lack of blog topics, for sure.  I don’t actually know why I have struggled getting to my computer.  I do know that I am feeling very overwhelmed lately, more than I remember in quite a while.  Had a brain scan last month, an EKG, and just last week a GI and endocrinology appointment.

Here’s what I need to write about today:

At the appointments last week I was told that I have a vermis (about the brain scan).  My first thought is, “What the hell is a vermis?”  This appointment wasn’t with my neurologist so this doctor was very clear to me that I needed to speak with the neuro.  (Obvi).  Anyway, I did a bit of research on what a vermis is, but couldn’t make sense of it so let it go.  I thought, “Maybe that’s why I am having vertigo and balance problems?  Is vermis scar tissue?  If so, that’d make sense, I think.”  It was just a mess, as always, in my head (no pun intended.  HA)

To be honest, this brain stuff usually trumps EVERY OTHER MEDICAL ISSUE of the day, but I was able to put it aside to focus on other things, and in another post I will write about the Global Genes Rare Patient Advocacy Summit that I attended.

But today I spoke with Dr. D (neurologist) and he said everything “looked fine” and blah blah blah “follow up”, etc.  I do see him and the neurosurgeon in a few months, and we chatted a bit about my balance and gait problems.  Now, these are problems TO ME.  I don’t know if anyone else gives a rip about them, but to ME IT IS A PROBLEM.  And the kicker?  There may not be a DANG THING that anyone can do to help me with it.  It may just be LIFE.  Again.  More life.  More change.  More adjustment.  More coping of NEW stuff that I CANNOT CONTROL OR CHANGE.  All these things happening to me that I can’t help or fix!  And, when I asked him about the vermis he explained that it’s normal anatomy of the cerebellum. It appears that the 2nd brain tumor is on/in/at/located there.

Oh crap.

I forget sometimes that I have another brain tumor, besides the (partial) one that’s still remaining.

2 brain tumors and I can’t get approved for Disability.

I can’t find a job.

I can’t do what I once did.

I have no money.

Now, before you interject here, I know I need to turn this around (I caught it right away, as soon as I started typing “I can’t” and I must write a post with the things I “can do”.)

But not today.  Not now.  Not tomorrow.  Just a word:

 

 

New gym gear

One of the great things about owning a blog is that I have my place to vent. To scream, yell, cry, or anything else that I need to do. This is my place. And it has been so healing to come here as often as I need to.

This morning didn’t start well. Tough appointment and tough things on my mind as of late: polyuria, weight gain, mastectomies, fatty livers, high cholesterol, no job, running out of money, just to scratch the surface.

I try to stay busy.  I also write.

And I go to the gym. I need to keep busting my tail HARD because if I have to go back on the medication I’m going to be in quite a little pickle.

Tonight I felt stronger and more empowered wearing my shirt. 🙂

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THIS!

Place your bets

Could it be Cushing’s Syndrome?

Or…

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are we still looking at Diabetes Insipidus?

I thought I was done with D.I.  I haven’t written a post yet about the protein powder and the polyuria.  That will come.

Found out today from Dr. S that we’re not in the clear yet.  The one blood test I have waited for over a month “Argin Vasopress” (Plasma ADH I think) was <0.5.  Undetectable.

This wasn’t the news I was expecting.

It’s really all about the math

This is my token whiny post.

I’m tired, scared, lonely, overwhelmed, petrified. I feel like I’m going to have a nervous breakdown.

I met with the new endocrinologist last week, he sent lab work, the 24 hour urine collection (which, I had to do on Saturday AND Sunday because Lab Girl didn’t tell me Friday the specimen had to be refrigerated!)…

Saturday I had a urine output of 4.4 liters. I wonder if there’s still blood in it? I’m sad that I forgot to ask/mention that to the endo last week.

Sunday?

5.8 liters.

So your next question I bet is, “How much does a regular person output in a day?” (Love my technical lingo?)

2 liters.

So it’s all about the math, really.

Tonight I’m feeling sad and scared. I just want my life back. The life I had before July 18, 2011.

I pretty much have the best Endocrinologist ever

I called my thyroid doctor on Monday to let her know what was going on. Then, today with all the continued tests I had to take (more blood, chest x-ray, another CT scan with contrast, and another test) – we were right next to her office building. I called her office to see if she had time if I could come by once we were finished at the hospital. The receptionist called back and said for Mom and I to come over when we were all done with the testing.

A bit later, after we ran all around the hospital doing stuff, I was in the waiting room laboratory and my doctor walked in! She had an opening or something and ran across the parking lot to try to track me down! She sat in with me and Mom while they were drawing blood (of course, couldn’t find the vein) and then we were talking about my appointment that I have with her in a few weeks. I had my lab order from her with me and I was going to have it drawn with today’s labs. So, then the awesomeness that is my doctor goes back there and gets some labels for some other labs she wants drawn for me. The crabby phlebotomist girl did NOT like that my doctor was there. HAHA, I loved it! My doc was talking to Mom and I about things and just the fact that she found me in the hospital and came to give me a hug made such a huge impact on my day today.