Tuesday, August 2, 2016

My Doctor Appointment & Its Aftermath

Yesterday afternoon, the doctor's office called to "reschedule the appointment I missed"!  Say what?!?!  My appointment was for TODAY! Their office screwed up and either a) told me the wrong day originally or b)placed my appointment in the wrong slot of the schedule.  Anyway, the doctor (whom I absolutely adore) must have realized it was his office's mistake and asked if I could come in last evening...He actually STAYED a little while after normal hours and squeezed me in.

Like I said, I love this man!  Besides being compassionate, he is absolutely BRILLIANT and one of the top MS docs in Connecticut!

Anyway, as I predicted, the appointment lasted no more than twenty minutes.  He updated my recent history, the fact that I have been off my MS meds since the end of November, and did a quick check of my blood pressure (fine as always) and reflexes.

He left my chart on one of his office worker's desk to schedule an MRI for me so now I wait to hear when that will be.

Once the MRI is done, Papa and I will go back to his office to see if any new lesions have developed in my brain - You can get new MS lesions without displaying any new obvious symptoms - and figure out what medications I will go on to combat this disease.  It may be that I go back to the three times per week shots....Not my favorite option but I will do it if it's what will work best in my case.  OR I may be able to start taking the newer "orals" out there in drug land - which would be awesome but have their own set of risks/side effects that  Papa and I need to evaluate first.

Before seeing the neurologist, I guessed I would have felt relief after getting the ball rolling again.


Yesterday on the way home from his office, I felt extremely depressed.

It's difficult to explain what it's like living with an "invisible" illness.  There are TONS of memes and articles on social media about not immediately judging people who park in handicap spaces but can walk and the whole "you don't look sick" attitude of others.


For the person who actually IS dealing with the "invisible" illness?

Let me tell you, it's invisible to me a lot of times too!  There are days...weeks...MONTHS where I feel like "me".  That's it - just me not my symptoms.  Long stretches happen where my MS is just tiny blips on my radar that I can squash out like little annoying gnats.

And, for the most part, since being off the injections and feeling pretty decent, I have almost tricked myself into believing that I am me - a person withOUT a disease that could still leave me wheelchair bound.  A disease that could take away some of my cognitive functions as well.  A disease that can also wreak havoc with my dexterity.  And, a disease that leaves the doorway wide open for other autoimmune diseases as well - like "hey come on in!  Join the party!"


I guess the reason I was feeling down was because I pretty much slammed right back into that brick wall of knowledge.

I AM okay though!  I have a LOT of things to be thankful for!  And I am in many ways relieved to get "back on track" with figuring out my MS therapy and I'm grateful to have such an amazing family, doctor, and set of close friends to help me through this.  I am so very very lucky compared to others who have this horrid disease!  Because, you know what?  I am still one of the "but you don't look sick!" people!  The ones who look healthy enough and can walk without a limp, foot drag, use of a cane, or the dreaded walker or wheelchair.  I still have my dreams of hiking the Long Trail once the guppies are out of high school and in college.  Heck, I can drive down the street and walk up a mountain TODAY if I wanted!

Today I choose to purposely focus on the GOOD things!

Have a great Tuesday everyone!


  1. As you know, I am dealing with my own "you look fine" disease. Yesterday I started to feel yucky and today a full blown attack, same that got me admitted back in April. I am not sure what a set it off, but know I pushed to do a lot yesterday and this morning. Plus we had Chinese takeout earlier in the week. I combatted by getting a sub for last hour coming home and sipping ice water. I guess my little "whine and cheese" moment is to say I understand. 😘

    1. Booo! That sucks that you got another attack! But, I guess the silver lining is that you didn't end up back in the hospital, right? As for the pushing yourself, yeah completely understand - it's so easy to overdo things when you are doing even semi-okay. Feel better and talk to you soon!!!