Radiation & Vandy Update

I’ve written and deleted this post countless times.

The bottom line? Radiation was terrible.

What was not terrible was the support. So I’m going to leave the crappy details out and focus on the awesome. (There is an actual medical update at the end...I didn’t keep y’all waiting for a month a half just to read about how well I am loved).

-I had someone there with me every single day. Gary (my boss and very dear friend), Steven, my parents & my sister Carol all made sure I had a smile to see and a hug to receive when I was finished. Start to finish I wasn’t there more than 20 minutes and it seemed silly to have someone come all that way for 20 minutes. Until I had my first treatment.... Thankfully Gary insisted he come that first day. (If you choose to scroll down and see the photos you might understand why I needed a hug). I underestimated radiation. I put out a text and it was handled for all 10 days.

-I had a card to open every morning. Carol had 10 cards prepared & labeled with which day to open it. This girl didn’t just sign her name to a Hallmark card. Nope, these were the blank inside cards where she wrote Bible verses, jokes, inspirational quotes, weird hashtags, and a thoughtful, day specific encouragement note from her. The time & energy it took her to do all of those for me....sheesh!!

-When I got to work each day after radiation, I had an encouraging note from Vicky (we share an office and she’s my pal) laying on my keyboard!

-Chloe (my niece), Kennedy & Tania (Arissa’s best friends) spent several of their Sunday’s with me doing anything that I needed to make my week go easier. With their help, I’ve been able to still meal plan and prep meaning I’ve stayed on track with my diet. HUGE stress reliever!

-Beka (another office pal) made me a radiation countdown and affirming words board. She got me the prettiest “you did it!” celebration flowers my last day, too!

-Steven got me through with his strong shoulder, usual humor and a dozen roses that second week when I hit the wall and melted down.  He took me to Lakeside Tavern to celebrate, too!

-My incredibly understanding and supportive work family made this so much easier.  I never worried about the time missed or the work that had to be done.  They cheered me on, picked up my slack, and tried to down play the way I looked each day (for that I am so grateful because that part was really tough on me).

Side note.. this whole thing may have been so hard because I was also dealing with my back. I have now received 2 lumbar injections and finally got relief a few days before Thanksgiving. Sadly, this was after I was done laying on a hard table every day. Miserable is an understatement.

But! We DID make it through, I graduated and got a souvenir mask. The mask is now hanging in my living room and will be wearing season appropriate hats for the foreseeable future.

                        

Now—-what we’ve been waiting on. Did this work? 

As of Friday, nope. It sure didn’t. 

And things are getting worse instead of better. I DO have single vision and therefore have 2 eyes most of the time these days which I am very grateful for! However, the tests that matter show I am not seeing everything and my eye is still “smooshed”. I was told that we would have to see a positive change in January or we will have to move ahead with the surgeries we have been fighting to avoid. Radiation continues to work after treatment ends so we are praying for a huge change in the right direction when we go back to Nashville. 

That mustard seed faith .....

Photos below may be tough to see.  I've had several in my village choose not to see them (totally understandable).  If you don't want to see my face after treatments or me bolted to the table then your visit to The Pod ends here.  They aren't gruesome but hard to see when it's someone you care about. I've added a bunch of space so scroll down for the photos.

Bum Rap

If you knew me you would know I'm just a person, doing the best I can with what I've got, and with what I've been given.  Maybe it's a bum rap, and maybe it is actually the greatest opportunity I've ever been given.  I think it's probably a bit of both.  -Lisa Bonchek Adams

Every day I put one foot in front of the other.
Every day I take the hands full of pills.
Every day I know that there isn't an alternative to this life I have been given.
Every day I look in the mirror, don't recognize who is looking back at me, but put on my makeup, jewelry and try to make myself look as much like me as possible.
Every day I am thankful that I have the resources that I have.
Every day I am grateful that while I have really significant issues, they likely won't take me from this Earth.
Every day I remember that no matter how heavy my load is, there are others who face much worse with dire consequences.

That doesn't mean this is easy.  That doesn't mean I don't struggle.  That doesn't mean it's okay to make pirate jokes or to make comments about my appearance.  This shit is hard enough without feedback from people that have no idea how hard I fight to function every day.  And I don't just function or barely get through each day...I have a very active life that I have to make a conscious decision to participate in.

Some days this whole deal just aches in my heart.
Some days keeping track of everything is too much.
Some days I shed tears over the enormity of all I juggle.
Some days I wish I could wear a sign that with my long list of crap I have to deal with so people will know I have really good reasons to be short tempered or not in a great mood.
Some days I just pray that I'll make it through the day without saying or doing something that I can't take back.

The steroids are wreaking havoc on my body.  The latest development being a diagnosis of  medicine induced diabetes.  I now have to check my blood sugar twice a day.  I now have to modify my already modified diet.  I have to read labels differently, track my foods more accurately, track my macros more carefully.....my brain just doesn't get a break anymore.  I am constantly planning, brain storming, making lists, researching.  It never stops.  Never.  And it's exhausting.

We met with a dietitian, we have a treatment plan and this will eventually be second nature to me just like everything else I've had to adjust to over the years.  But honestly...right now, I'm pretty bitter.  There is hope that once I am done with the steroid treatments my body will chill out and the diabetes will resolve.  I'm also realistic...I know my body.  I know my luck.  I know how this will likely end.  And I know that in all likely hood, this is my new forever.  And I know it's not the end of the world...it's just another big thing on my plate that was already stacked high and wide.

I don't write these words for replies, sympathy or pity.
Sometimes I just need to write my feelings out so they don't fester and consume me.
Sometimes writing and sharing is better than quietly crying while the house sleeps.

Sometimes after I write it all out I look back and think...suck it up, buttercup. 

Thanks for coming to my TED Talk

I’ve decided to resurrect The Pod as a way to keep a record for my own reference and maybe it’ll help someone else dealing with Thyroid Eye Disease (TED). Finding info online (that is not super technical) is pretty difficult but I did find a group on Facebook that’s helped & maybe this will be another reference for someone. This initial post is going to be long but will have a lot of the details needed to understand what I’m talking about going forward.

Disclaimer: this is my personal experience, from my point of view, told in my own words. 

Thyroid Eye Disease (TED) is a relatively rare complication of Graves Disease (associated with an overactive thyroid). TED is more rare in patients with Hashimoto’s Disease (associated with under active thyroid). The same antibodies that attack the thyroid also “like” eye muscles. When these antibodies attack the eye, it causes the muscles to become inflamed and enlarged. This results in the eyeball being pushed forward from the eye socket, limits the movement of the eye, causes the eyes not to completely close, severe double vision, dry eye, eyes watering and extreme sensitivity to light. This isn’t all of the side effects, and the biggest one not listed above is vision loss (due to the inflammation compressing the optic nerve).

TED is not necessarily a result of uncontrolled thyroid disease (mine has been stabilized with medication since I was diagnosed in 2015). TED is very misunderstood, even in the medical field. I have educated at least 4 doctors since March and 2 of them had never even heard of it before. 

Diagnosis is done through an extremely thorough eye exam and confirmed via CT scan. Treatment for TED in America is mainly surgical, almost always 2 surgeries and a third depending on how the eye lids are sitting after the first two. The first surgery is Orbital Decompression which removes bones around the eye socket to make room for the enlarged eye ball. The second surgery is strabismus which moves the eye muscles and realigns the eyes so that they move together. The surgeries can’t begin until the disease has stabilized. This usually takes between 12-18 months. During this time you are examined every 3 months to measure the pressure in your eyes and your vision.  The time table for treatment to begin changes if at one of your follow up visits there is any vision loss or if the pressure behind your eye is too high.  Both of these could lead to permanent vision loss.  

This is one of those things that takes specialists to treat....the 2 main providers I have are Dr. L, a Neuro Ophthalmologist (the head of my treatment team) and Dr. S, a Ocular Plastic Surgeon. This isn’t something I could receive treatment for locally (I was diagnosed here and referred out). I live right outside of the 3rd most populous city in Tennessee and still have to go 170 miles away. I am super grateful it’s not farther and we have the means to make the trips (and I gotta say I sure love road trippin’ with my husband).  

I think I've covered all of the major parts of this deal and going forward I plan on this blog being more of my personal experiences than a medical class.  

Thanks for coming by....feel free to leave a comment and let me know you were here!

oh...ignore the About Me section on the side, it's about 85% accurate.  I haven't done this blogging thing in a hot minute and have yet to figure out how to update that section.