carry on

This has been a really crazy year for me.  If I have learned anything, it is to carry on.  Life might not be what you thought it would look like, I know mine isn’t…. but if you can adapt to the changes, and work on yourself, you can find your own way to live and be happy.  My body told me to slow down this year and listening to it was the best thing I have ever done.    

This song came on my shuffle this morning, and it’s a good message to go into 2019 with. 

my favorite part of the song: 

‘Cause we are 
We are shining stars
We are invincible
We are who we are
On our darkest day
When we’re miles away
So we’ll come, we will find our way home
If you’re lost and alone
Or you’re sinking like a stone
Carry on
May your past be the sound of your feet upon the ground and
Carry on

There have been a lot of ups and downs this year, but I know I am moving in the right direction. I’ve been getting healthier, and stronger both mentally and physically.

I was just reviewing my medical records online through Northwestern’s portal, and realized I have 12 doctors there (plus 2 at the Ability Lab, along with a team of PTs, OTs and everyone else). While that is insane, it also gives me a lot of comfort to realize I have finally found doctors who don’t think I am overreacting or exaggerating my symptoms. They believe me and want to help me find answers just as much as I do. 

This year I am coming out with 12ish new diagnoses (still undergoing testing), but I have also gained the knowledge to know enough about these conditions that I am not as scared of my own body. That has been my biggest problem, not understanding what is happening. Doctors who didn’t explain things, then wondered why I ended up in the ER with pain I didn’t understand, that was excrutiating.  No ER visits since May, so that alone is a huge win!!!  

I am still waiting on the results of the genetic testing I had done.  It takes up to 8 weeks to get the results, so halfway through the waiting… my doctors think there is a genetic factor that might explain my fragile blood vessels, and my hypermobility.  Just trying to stay positive, and not google everything it could be (because trust me, I already have).  

In January I will have a few procedures done to look further into my esophagus issues (trouble swallowing, spasms, and regurgitation occasionally)…. more on that to come.  

I am also taking a quick trip to Florida in January, so that will be a nice change of pace!  Me and my new roommate (my mom LOL) are going to stay with some family there for a few days to warm up our bones.   

I hope everyone enjoys their New Year holiday, and thanks for following along and for all of the love and support I have received from EVERYONE this year.  You all mean the world to me.  Cheers to 2019!!!! 

#onward 

see ya 2018

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fallingwater

Fallingwater – Maggie Rogers 2018 

My, what a year it has been.  In health, and in life!  I have had to make some of the hardest decisions of my life this year, but I know I am moving in the right direction, and that is what is important.  There are some things I don’t discuss on here, but I have been going through some tough transitions, and am eternally grateful to everyone who has been there for me this year.  Doctors, family, friends, my chronic illness family, thank you for dealing with me when I haven’t always been a good patient/friend.  Life can be rough, but I have some amazing people in my life who have been there doing everything they can to help me get through it.  

I had my final 2018 doctor’s appointments yesterday, and am glad to have a few weeks off from hospitals!!  I saw my primary doctor, and a Gastroenterologist at Northwestern Medicine.   The primary appointment was for my yearly physical/blood work and that all went well.  I saw the GI and that didn’t go as I hoped.  

I had an esophagram a few weeks ago, so this appointment was to follow-up on the results of the test.  The stent in my aorta is pressing on my esophagus, so I thought that was what was causing my difficulty swallowing.  She explained to me, that the pressure is minimal and shouldn’t be giving me the symptoms I am having, so we are going to do a few procedures to explore a little more.   She is going to do an EGD with manometry placement, and endoflip.

Hopefully these tests will give us some more information about what is going on.   I will have this in January.  Also in January I will meet with the doctor about the results from my genetic tests.  eeek.  It seems like each time I think I am nearing the end of my list of appointments I end up with more!! 

I will also go for a follow-up at the AbilityLab in January.  I have been stepping up my strength a little bit so I am excited to see where I am at compared with a few months ago.   I was able to carry a case of water today with minimal pain, which to a normal person sounds dumb, but to me that was a huge milestone!  I still stick to really light weights, but I can tell I am getting stronger every day (still have the upper body strength of a senior citizen, but it’s getting better LOL).  

In April 2019 I will follow-up with my Neurologist and get a few repeat scans to check on my stents and arteries.  I am just trying to keep my head up and take it day by day.   My life is a mess, but it’s a fun mess mostly.  

#onward