Chronic Illness Tag

I have tried to get my creative juices flowing lately.  I found this post from The Cacophonic Blog and decided to give it a whirl.  It’s just kind of a recap – current update – on my medical status:

  1. What illnesses do you have?  I am living with 2 Rare Diseases; Cowden Syndrome and Lhermitte-duclos Disease.  I also had thyroid cancer in 2003 and a prophylactic hysterectomy.  I have suffered with depression and anxiety for the last 20+ years.
  2. When were you diagnosed?  The Rare Disease diagnosis came in 2011.
  3. Have you ever been hospitalized?  Oy vey.  So many hospital stays.  The major ones are for the brain surgeries in summer 2011.
  4. Have you ever had surgery?  See above.
  5. Do you take any medication?  Presently, I take an anti-depressant and something to help me sleep.  I don’t know if it’s a symptom of menopause (probably) but I have insane insomnia and do not sleep without Trazodone. I take vitamins and herbs (anti-virals) also.
  6. What do you wish people knew about Chronic Illness?  That is sucks.  And, if I’m quiet – please check on me.  You’d be amazed at what a quick text can do!
  7. How can awareness be raised? I think talking about it can do a lot.  Many times I find myself “playing the brain tumor card”.  It actually helps me cope and accept my medical status if I talk about it!  I’m sorry if it comes off rough or if you feel I’m too blunt, but let’s talk about it!  I’m not afraid (welp, kinda) and want to talk about the brain tumors and hereditary cancer syndrome. Oh, and follow me on Social Media!  Twitter and here for Instagram.  🙂
  8. Who knows about your illnesses?  I actually don’t know.  Sometimes, I feel that my friends may forget what I live with daily.  However, we all have our crosses to bear, of this I know!
  9. How do your illnesses affect your life?  Oh, this is a doozy of a question.  Today, it affects me differently than years ago.  I have learned to pace myself, to stay hydrated BEYOND belief, to bring a sun hat if I’m going to be out in the sun (my head HATES the sun now), bring ear plugs with me everywhere I go (my hearing is so sensitive now), and to TAKE A BREAK if I need one.  I find that after a long day, it’s best if I go into a dark, quiet room and turn off my brain for about 45 minutes.
  10. If you could tell the medical community one thing about your illnesses, what would you tell them? Since Cowden Syndrome and Lhermitte-duclos Disease are rare, we need to walk this road together.  Most of my doctors support me on this, that we are a TEAM, and what I say GOES.  I’m very thankful for them!

 

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I’m forever playing catch-up with my life

Where or where to begin?

I’m up early – couldn’t sleep – and decided to jump on the ‘ole blog because life is coming full force and at times, I can’t breathe.  Writing, sometimes, helps me breathe.

Here’s a quick recap on the last few months:

  1. In January, I lost my rescue dog.  I loved him for the past 8 months and he forever changed my life.  I was utterly gutted at his loss, but it was time.  He was ready although I never was, nor ever will be.
  2. Finally got the referral to a neurologist (that was desperately needed!) and was told I have (the beginnings of?) nerve damage in my feet.  From the brain tumors?  The brain surgeries? Huh? What else now?! I had a nerve test last month and it was hell.  The dot and the period.
  3. Do you remember the thyroid issues I have dealt with since last October?  Last month also, I had another fine needle biopsy on my (empty) thyroid bed.  (So, let’s see that’s – ultrasound/MRI/fine needle biopsy X2) – and there is STILL NO ANSWER AS TO WTF IS GOING  ON IN MY NECK! I had have elevated thyroglobulin and my doctor thinks maybe it was a technician error?  Yet something is growing (I guess?) in my neck but it’s not a lymph node or thyroid benign or malignant cells? Ugh, I’m beyond exhausted.
  4. Haven’t filed BK yet.  Found out there was some paperwork I need to submit to one of my creditors.
  5. My anxiety is getting pretty riled up and I am struggling with even the simplest of daily life tasks.
  6. I deleted my twitter account.  I don’t know why; just felt like the right thing to do.  Maybe I’ll be back one day? There are so many wonderful things about twitter, and to be honest it just doesn’t feel right watching Days or Gutfeld w/o tweeting!
  7. I have this great urge to purge (LOL).  Probably the shame and anxiety about the BK.

So, what else folks?  Do I continue this morning to wallow in shame or do I put on my big girl pants and get crap done today? I’m sure you know what I want to do.  Let’s see if I fight against my norm and do it different.

 

 

Financial status 2019

Hi there.  It’s been a while; I’m still here.

I think I have written many times about my toxic financial situation post diagnosis of Cowden Syndrome and Lhermitte-duclos Disease.  For the sake of time, I’ll try to snapshot it here:

  • I’m in debt over $20,000 on my credit cards as I have been forced to live on them, since I can no longer do what I once did for employment.
  • I have kicked around this idea for months, the bankruptcy idea.  I have prolonged it as long as I could because my ego and credit score. 🙂
  • I also owe over $35,000 in student loans (you know, the whole career thing I had planned before having 2 brain surgeries, et al.)

I called one of my creditors this morning to find out about any hardship programs they offered.  Currently, my monthly payment is $395.  Guess what program I qualify for with them?  A 5 year program with a monthly payment of $370.

Huh?

Am I missing something here?

So, bankruptcy is next.  I have an appointment the end of February to see an attorney to just get this done and over with.  (NOTE:  The filing fee for bankruptcy is $1875.)

So, if you happen to see or hear from me and I am riddled with anxiety, or so depressed I cannot get out of my bed, or I’m distant or just seem off – please know it’s because life is a lot right now.  It is literally costing me money to live – and I am going deeper in the hole every moment of every day.

Pretty grim right now for me, tbh.

If you happen to see me on Twitter and see my posting about my GoFundMe or my Teespring store, would you do me a solid and share then for me please?

Thank you.  Until next time.

#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!

Another year in the books AKA Stable 2018!

Waiting to see my Neurosurgeon to review my brain scan. Results are in: both tumors are stable and see ya in a year!

#SocksForScanxiety

I’ve made that my thing over the years: Every time I have a brain scan I treat myself to new fun socks!

This year’s pair is an early Christmas gift from one of my BFFs.

(Can’t sleep. Stalling. Putting it off.)

Tomorrow will be here before I know it. Come what may!

some days can suck it

You know what?  Some days just SUCK.  Plain and simple.  I’m dizzy.  Nauseous.  Bored.  Angry at myself.  Frustrated.  Worried.  And on and on…I kinda only realized TODAY that some days are just going to SUCK.  And, I did quite a bit yesterday, so maybe that could be why today blows?

Doesn’t mean I’m doing it wrong.  Or that I am bad or less than.  That it’s my fault I feel like garbage. Or that the brain tumors are growing or that my elevated liver enzymes mean anything BAD.

This is just part of my “new normal” – I’m going to feel like crap all most days.  I just am.  Period.  I guess the sooner I get on board with this the better I’ll be.

At least, I should start convincing myself of that.

What do you do when you can’t…?

For Pete’s sake, I have Cowden Syndrome and Lhermitte-duclos Disease and can’t think of anything to write about today?  Eeeeeesh, that’s weird.  I just spent 20 minutes looking up “Blog post ideas” and got sucked into the black hole of competitors and marketing?  Baha.  No clue.

I have some news that I am debating about sharing here.  You guys are the greatest and I know you’ll be supportive and happy for me! ❤

I decided to join a few books clubs and I am very excited to go to them.  I was a huge reader before diagnosis, but then I put it away for a while because it became so challenging for me; and in fact it still is.  But, I know reading is good for my brain so I am thankful to have found my passion for it again.

I ordered the books online and can’t wait for them to arrive.  I’ll share them with you soon.

Fall is just around the corner; I cannot wait.  Which then leads to Christmas time which is brain scan time.  Blech.  Saw the oncologist a few weeks ago and have a mammogram and kidney scan coming up quick.  I wish I could tell you I am a pro now at these appointments, but haha, nope.

I do not want to ignore my feelings, but I then wonder am I doing myself a dis-service by not writing about them? I can’t will them away; my thoughts or what I’m experiencing.  It’s a bitter pill for me to swallow as I am acutely aware of how many walls I am running into because of my wonky balance issues.

Soon enough I will write about the current brain tumor/surgery/symptoms I am experiencing.  Not tonight though.

Oh one more thing.  Have you watched this showI love it so much I cannot stand it!

 

Past Present Future

I long for the day when July 27 will be just like any other day.

Not today. I’m not there yet.


 

 

 

 

Remember

I remember.

So today I did some good stuff:

Facial.

Cupcake.

Massage.