Not a Motivation Monday

Most days, Cowden Syndrome and Lhermitte-duclos Disease lay pretty quiet.  Except for the constant doctor appointments and dizzy spells, that is.

I try to live as normal a life as I can.  I exercise as often as possible.  I volunteer weekly.  Yet some days my medical status screams its ugly head and I’m knocked off my feet.

This week, I had had the following scheduled:  New psychiatrist appointment, new neurologist appointment (because I was without care for a few months), and a colonoscopy and EGD.

I knew this week would be busy, so I tried to ready myself as best I could.  But it’s only freaking Monday!  Why are things coming unraveled already?! I received a call this morning from the neurologist’s office.  The “doctor” (I use that term loosely) was reviewing my case and decided that she would not see me.  You see, I had been under the care of another facility (within the same system, just a different city) but when their neurologist left the clinic I had to make other arrangements for my health care.  Just because I have welfare insurance doesn’t mean my health suffers needlessly.  I am my own advocate.

I explained the situation, but of course it fell on deaf ears.  I was refused care.  And, I 1/2 bet it was because she didn’t want to treat me.  2 brain tumors and another Rare Disease.  I mean, who’d want to touch me with a 10 foot pole, right?

I lost it.  I won’t go into details of what I told this young girl on the phone and what I think of this doctor.  I didn’t cuss.  I wasn’t rude.  Just very expressive of how the decision of this so-called doctor is affecting my medical care.  And, my Disability claim on top of that.

My life is in limbo enough.  Now, add this neurology fiasco and I feel even more defeated then I do any other day of my life.

Happy Motivation Monday to you all!

 

 

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Let go

I know it’s good to be busy.  But I have been so busy these last few weeks that I feel like I am forgetting something.  That is the oddest feeling.  I haven’t had any medical appointments for a while and instead of relishing the quiet, I feel anxious.  I feel like I am missing something and that makes me uneasy.  This sucks.  My life shouldn’t be this way.  Cowden Syndrome and Lhermitte-duclos Disease are here to stay, and in fact, have been with me since Day 1.  Yet since my diagnosis I feel this intense amount of pressure.  Mental, emotional, call it what you will.  I feel so much weight on my shoulders to manage everything, because it’s my life we are talking about here.  If I forget to do something, who knows what it could lead to?

I know stress doesn’t help anything.  I try to relax, I try to get good sleep.  I volunteer to pay it forward.  I just hate this feeling that if I “don’t do it right”, I will get sick again.  You know, I think that’s it.  I think I just had a mini-breakthrough.  All this pressure I feel, that I am putting on myself, managing these Rare Diseases that must be done “right”, is giving me a false sense of security?  That if I control everything (which I know I cannot) I can keep myself from getting sick again.  I don’t know if that makes sense or not.  The brain surgeries were just so terrible and the recovery was so painful, I’m terrified that I will have to experience that again.

This is where I must Let Go and Let God.  I am trying.  I don’t do it well, and I don’t do it perfectly.  But, each day I try.

On my way

  • I’m on my way to the next P.T. appointment this morning.  Little bit of apprehension.
  • Went to another FORCE meeting this weekend.  Sigh.  I can’t believe I’m considering another surgery, but I really am.  Today I think I can handle surveillance every 6 months for the rest of my life, but tomorrow I will remember these women who have had prophylactic bilateral mastecomies and who look AMAZING.  Strong, powerful, stunning, women and wonder if I can be one of them too?
  • I’ve been on a small dose of estrogen for several months since the hysterectomy and it has helped wonders with the hot flashes and insomnia.  Well.  About a week or so ago (maybe 2, I don’t know) I started getting break through hot flashes.  (I thought that I could handle those, I’d look for some homeopathic treatment and be OK.  Because, we don’t know if me being on estrogen is going to end up biting me in the bumm at some point in the future, anyway.)  But, add in the insomnia too?  No.  Just no.  That makes me so angry!  I get really crabby when I don’t sleep.  And, call me crabby today because I didn’t sleep for beans last night.  So, the oncologist said I could increase the estrogen a small amount and see if that makes any difference.  So far?  None.  Patience, I have none.  I have no time for my body to decide if it’s going to make nice with the estrogen.  I just need it done!
  • I’m still volunteering at a local animal shelter.  Here is my lovey and I want so much to adopt her.  Her owner died and they brought her to a shelter.  She is skin and bones and was so depressed when I first met her.  At least now she is greeting me when I visit and will eat treats from my hand.  I pray she gets her furever home!

    Kayla

    Kayla

 

Goals

My biggest hope is that with this blog I can help someone feel better.  Either someone newly diagnosed with Cowden Syndrome, or brain tumors (any), or Lhermitte-duclos Disease, or any rare disease.  That by sharing my story as openly as I have it will give another the strength to take their next step forward.  You see, I didn’t have that when I was diagnosed.  I hope to help it be different for someone else.

I received a compliment today from someone on Twitter (you know who you are!) that absolutely means the world to me.  Never, in a million years, did I think of today – 4 years ago.  I want others to know that it gets better.  Now, I may scream, cry, and get on the pity pot as we are all wont to do, but I do what I can to leave all that garbage here and then go on about my days:  Volunteering, working on-call when I can, etc.  It’s not easy, but I try.

I have thought about PT these past few days and can’t believe I forgot to mention to him a few things:  that I have struggled with fine motor tasks (I notice them.  This may not be a big deal to others but I know there is a change) and I should have focused more on my gait as one of my concerns.  And also told him that when I need to stand up on things (like when working out) that’s a big, freaking, deal.  It really is.

So, I don’t know what tomorrow holds, or next week or next month.  I know my next PT appointment isn’t until next week, which will give me more time to ponder about what I hope to do in PT.  Part of me wonders if my brain can make these changes, neuroplasticity I think is the correct term.  Can I?  Is there too much damage?  Was my brain scrambled too much to make any progress?  Will the insurance people count minimal progress and any progress and give me all the appointments as approved?  All this mumbo-jumbo insurance stuff always ruffles my feathers, but I am here to try.

Yup

Anything is better than nothing, right?  I know I’ll have another post soon after the next appointment because I really want to document this PT journey.  I know there will be some tears.  Frustrated tears are just par for the course now.  But, once I get the tears out hopefully they won’t come again.  🙂

I’m working on owning it

I’m doing the best I can to own my truth.  My life with 2 brain tumors and post-brain surgery is a drag sometimes.  While a few days ago I felt a smile return, it’s nothing like how I was feeling a few months ago.  I want to feel how I did then!  On Medication?  Check.  Therapy?  Check.  Exercise?  Check.  I’m still doing all those things now.  So, what the eff is wrong?  Why this depression still?

I have no idea.  I can’t piece anything together, really.  Except that I am noticing more and more issues delays problems (?) with my walk (gait) and balance.  I cannot stand still with my eyes closed (I mean, who does that on a normal day, anyway?) and I need more and more support when I’m working out.  I can’t tell you how frustrated this makes me!  I see everyone else doing the exercises and here I am using the wall for support.  Or, not using the free weights because I might lose my balance and fall.  Things like that.  Things like this make me feel different, and I have felt different my entire life.  I always felt like something was wrong with me, and most doctors I saw told me, “Just lose weight.  You’ll be fine.” (Never mind I had a huge goiter in my neck, and come to find out a huge brain tumor too!)  But, was it my intuition telling me that I was different?  Or that something was wrong with me?  Something not quite right?  I don’t know, but it took brain surgery to finally get me validated.  And now, when my brain feels “odd”, or “not quite right”, I am concerned that people are judging me.  I am concerned that people think I am faking, or “She had surgery and she’s fine.  So, what’s all this now?”

I can’t explain why I seem to have good brain days then bad ones.  Today, a bad one.  My brain feels like it’s getting mashed like potatoes or something, and then I know I’m not quite right when this happens.  I have a headache on crack.  Weather changes exacerbate it, I’m sure.  As does life, stress, or chocolate (HA).  But isn’t chocolate supposed to help stress?

I can’t deny that this cloud of depression is still hanging over me.  It’s never been this palpable where I can about taste it.  Nothing else has changed in my life to make this so much worse for me!    I am still in the process of scheduling an appointment at a large hospital for another test on my brain.  I am still volunteering.  I am still subbing when I can.  I am still managing my schedule with all my appointments.  I am still in dire financial trouble.  I am still involved in a 12-step program.

Am I over-analyzing things too much?  Probably.  Am I going to be searching ’til the end of time about why things change so much on a dime?  Probably.  Should I accept what I don’t like?  Of course.  I just don’t know how to do that.  My brain is a jumble of things on a moment-to-moment basis that if one thing falls through, I feel as though I am doomed.  Would I be feeling this same way if I didn’t have Lhermitte-duclos Disease?  I’ve always wondered that.  I’ve always wondered if this is just “Regular Heather” or “Brain-tumored Heather” and it just is.  I know that I am better on acceptance but no where close to where I need to be.  Because when something like this happens (the severe depression) it scares me so deeply because it has exacerbated my scars.

Does this make sense?  Why am I using so many question marks?  Because I am really trying to use this post as a therapy outlet, specifically for the depression.  I want to feel better.  I guess I just have to own today and accept that this is where I am today.  And, hope that tomorrow I’ll be in a better place.

THE week

Some  weeks are Cowden Syndrome and Lhermitte-duclos-free.  Other weeks I am slammed with several appointments all in a row and I’m reminded that my life is different and this is my new normal.  I think it is a tad easier to accept these things that I do not like.  Maybe I’m getting tired?  Or stronger?  Or maybe it’s that I have realized that in this “new normal” there are other things I can focus my energy on?  (Volunteering at the animal shelter?)

I haven’t yet written about what happened at the breast MRI appointment; I’m embarrassed to say the least.  Suffice to say I didn’t get the scan as I needed to.  So, my poor oncologist has been forced to find another option for me to check my Dairy Queens in the meantime, so that we “don’t miss anything”.  (Quotes added but inferred by both she and I.)  Tomorrow I have a mammogram and then if need be, followed immediately by a breast ultrasound.  Let’s hope, as always, for NO WHAMMIES and big money…I have had the ultrasound before and it’s not. fun.  But, we’ll see.  We will see.  Whatever it is it is.  I’m not nonchalant about breast cancer or the possibility of it, but I just realize that I have to do all these things.  I have to go to the doctor, go to the hospital. go here and go there because “they” want to make sure I am being watched closely.  THAT, I get.  And, I’m thankful for.  Doesn’t make it any easier, it just is what it is.  Does this sound like growth?  HA!

Friday I have a brain scan and then the appointment with the oncologist.  I have noticed that I don’t seem to be as dizzy lately, which is interesting because we had to decrease the Topamax because of the side effects I was experiencing.  But I have noticed something that is concerning, but nothing I can do about this either:  I don’t really struggle when I am talking to someone, maybe every once in a while maybe I will switch a word or two but nothing too big.  Getting the information out of my brain in one direction is OK.  But what HAS been a problem as of late is when I have to do that in several steps.  Meaning:  When I am subbing or teaching or reading something…getting and processing information from Point A, then to my brain, then OUT of my mouth in coherent words is hard.  Frustrating, difficult, confusing, not easy.  And, plain ‘ole not fun.  I noticed this last month when I was at church.  I powered through, because there is no other option, but man it was harder than I wanted it to be!

Isn’t that how most of feel at times about life?  That it is harder than we want it to be?  Sure, I don’t want brain tumors and high breast cancer risks.  I would rather be carrying my Fossil bag at Disney World enjoying the park! 🙂  But, I’m not.  I’m navigating slowly this rare disease life.  It’s much harder than I want it to be, but if I wasn’t on this road, I would not have met the people that I have.  I wouldn’t have this blog, either.  I realized that’s kind of a big deal, too.

Not Lhermitte-duclos Disease and Cowden Syndrome (kinda)

I have racked my brain for the last few weeks about something to write about that’s non-medical.  But, let’s face it.  Pretty much my whole life revolves around medical everything or how medical somethings have fundamentally changed my life for the much, much, worse.  But, since I am a list maker, list writer, list-follower (?) I thought it’d be a good object lesson for me to write some things going on that aren’t really brain tumor related.  So, here goes:

  • Saw a nutritionist last week.  She said no more protein shakes after my workouts, and instead to drink 2% chocolate milk.  I’m all for trying something new!
  • This is my birthday week!  Celebrated by getting a fancy manicure and DID. NOT. BUY. the Fossil bag I have drooled over for months (in Mushroom, BTW).  That, there, is growth!
  • Last night I spoke at a treatment center in a Twelfth Step panel.  Quite the experience!  🙂
  • Just before I began this post, I was at the animal shelter in the Cat Rooms.  I noticed that one cat in particular, Rita, didn’t look right.  Her hair seemed wet, and I guess she could have gotten in fight with another one and they could have fallen into a water dish.  But, what’s more likely is that she is ill because I heard that there is a something going around there.  I told the front office staff and I pray they look into it.
  • Been doing quite a bit of genealogy work on my mom’s family line.  I hope to never hear, “Oh, all my work has been done!” because it’s never done!  I love it so much.  I know these ancestors of mine are real people and they just wanted to be found and validated as once living souls on this earth.
  • I am thinking about doing another Booster fundraiser t-shirt.  (Especially since I shrunk mine in the dryer this morning.  #FacePalm.)  Would you be interesting in buying one?  More info. on this soon.
  • My new favorite reality TV shows:  Number 1 and Number 2.  Color me hooked; only for a few reasons.  #1 – because the single, girl in me hopes for love one day, no matter what the way. And #2 – because Days of Our Lives.
  • I have a trip planned in July and I am SO. EXCITED.  Here’s a clue:

 

My brokenness

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