Reschedule. AGAIN?

Coughing Fit

Just when I think things are running smoothly, I get a nice wake-up-call that that’s not the case.

But if Cowden’s Syndrome and Lhermitte-duclos disease have taught me nothing else these last 2 years is that my only option is to tuck and roll.

Yesterday, what had been on my planner, was one brain MRI to check the status of the 2 gangliocytomas that are present in my cerebellum (like how factual that sounds? I tried to remove all emotion. HAH.)  Now, supposed to is the key phrase here.  I had already drank a cupful of my best friend in the whole wide world NyQuil, my mom drove me to the hospital, dropped me off, I checked in, and was walking toward the MRI trailer.  I had my handy-dandy eye patch (so that I if I accidentally open my eyes while the mask [I call it cage!] is over my face I won’t toss my cookies) and was in the tube when the first tickle came.  I prayed my guts out and asked Heavenly Father to please help me get through this.  I had to get this MRI done, especially since the end of the year is coming up so quickly! **

Alas, no such luck on stifling the tickle. The cough came full force and I was sure I even moved my head too much!  😦

The cough settled down and then I knew I had to power throughI thought the NyQuil had kicked in enough so I had high hopes that it would keep any coughing at BAY!

Not so much with the no coughing.

The next tickle and cough came with so much force that the technician had to slide me out from the tube.  I couldn’t catch my breath, I could NOT stop coughing!  It wasn’t anxiety at all, it was from being mildly sick and the dryness of the fans.  It was a perfect storm of a big, hot, mess.

I wasn’t very happy.  And, I’m still not.  Now it’s a matter of finding the time to get the MRI AGAIN, when I’m:

  1. Not sick
  2. Not sick
  3. Not sick
  4. Not sick
  5. Oh, did I mention not sick?
  6. And also did I mention that this needs to be done before 1/1/2014 before the whole ACA nightmare begins?”

** Note:  This post isn’t to start a debate about ACA and the Obamacare debacle (my opinion).  I know we all have our strong feelings on this matter, on both sides.  Personally, I’m panicked to my soul about what direction my healthcare (brain tumors and genetic conditions aren’t anything to sneeze at!) will go now that my medical care and the government are intertwined.  I did not ask them to be involved and I do not want them involved.  I have doctors on my team that I trust and they are the ones who (along with me) should be driving my healthcare.  Not the government or anyone else I DO NOT CHOOSE to have involved in it.  This (ACA) is another reason I’m rushing to have another surgery next month, because I’m really scared to find out what my healthcare will be like come January 1.  But, more about that in another post. 

*** Man, I never realized how much I write in the passive voice and how much trouble I have putting my words into active voice!

**** I wonder why Kanye West came up as a suggested tag for this post?

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8 thoughts on “Reschedule. AGAIN?

  1. The ACA is supposed to guarantee no bias toward pre-existing conditions. Have you visited the websites to see what would happen if you signed up?

    I tested two different sites, healthcare.gov and coveredca.org, and both options were affordable and asked no questions about brain cancer/tumors.

    • My concern is not about biases, or any eligibility questions.

      My problem is the delays in getting needed approvals for ALL the medical “stuff” (that’s a good catch-all phrase) that comes with Cowden’s Syndrome and Lhermitte-duclos disease.

  2. Urgh. That stinks. I had my two year MRI on Monday and I’m always afraid I’m going to twitch or have a panic attack or something. The ‘tunnel’ part is getting easier with each visit. I had never even entertained the possibility of coughing. I’m so sorry you had to postpone the MRI.

    I will also keep my thoughts on Obamacare under wraps, as any comments as to why I think Kanye came up as a suggested tag.

    🙂 <= Bright, shiny, innocent smile.

    • Tell me about Kanye! 🙂

      If you are pro-ACA, that’s swell. Really.

      Coming from the rare disease perspective…who is high-risk for CANCERS up the wazoo, I foresee myself getting lost in the paperwork and procedures. But BELIEVE me….I will NOT go down without a fight. CS and LDD has taught me I am my ONLY advocate.

  3. Kanye…hmmm… Nope, I’ve got nothin’.

    I’ve got my MRI next week and I’ve got a cough, and am desperately hoping it’s gone before then.

    I’m sorry you had to reschedule and are worried about your coverage come January.

  4. Pingback: I have a good life | whatsupcowden

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