When the wind is knocked out of your sails....Find your mustard seed

Friday we went back to Vanderbilt to meet with my team.  Here is what I 100% expected would happen-- things are still improving, my vision isn't decreased, eyes are working well aside from the lingering double vision, finish these last 2 infusions and see how the double vision settles out, come back in a month and we'll go from there as far as radiation.  Have a great weekend, Mrs. Freeman.

Here's what actually happened when I started my pilgrimage down the hall and in and out of rooms--

Not as bad as before treatment started, but definitely decreased vision in my left eye.  The field vision test that I have aced every single time (even before treatment started and my eye was really, really bad) had marked changes.  My pupils aren't reacting evenly.  As I'm taking these tests and seeing the difference in lights shone in my eyes, I sunk.  I could tell where this was going.  I knew this wasn't going to go how I thought.  Once again, surgery was made to sound urgent.  I bit my lip looking at Steven, who locked eyes with me.  I think we were both stunned.  I tried to make my lip stop quivering.  Sat myself up straight and made a point to look my doctor in the eye with a strong look of determination.  As we walked out of his room to wait to see what the final decision would be, the wind in my sails fluttered away and I sat in the chair next to Steven, put my head on his shoulder and quietly cried.  I'm not sure I've ever cried in a waiting room before...I guess there's a first time for everything.  I just couldn't believe things weren't as good as I thought they were.

We waited for the first doc (Dr.L; the neuro-opthamologist) to talk to the second doc (Dr.S; the ocular plastic surgeon) to discuss the next steps......

I'm pretty sure I have the only surgeon that doesn't want to actually operate because once again, she has a plan to save my vision and keep me out of the OR.  We are upping my last two steroid infusions back to the full 500mg.  I am referred to Radiology Oncology for radiation treatments.  She sent me for a CT of my orbits before we left Nashville & I have a return appointment in only 3 weeks. 

There are a few caveats though..one being my liver function test results.  I had them drawn Thursday as a follow up to labs ran 4 weeks ago that showed elevation.  If the LFT is too high, no more steroids.  Also, I can't have radiation while "diabetic" so we have to wait for the steroid infusions to end before we can begin.  I have more questions than answers as far as the radiation goes so I don't have much to tell y'all except that it is 2 straight weeks of daily treatment.  Please pray this can be done locally; this having to be done at Vanderbilt would create a HUGE issue on many fronts. 

I asked how things can be so bad when they look so good?  Inflammation is what compresses the optic nerve--the inflammation is clearly reduced. He said it is likely compressed in the back.  The radiation is supposed to reduce this inflammation.  Studies show that steroid treatment along with radiation typically has as good of an outcome as surgery.  I am still not a great surgical candidate and I really really really don't want surgery.  But, I also really really really want to see well again.

So....I reach for my mustard seed.  I'll probably wear it more often than not.  I'll fiddle with it and I'll remember.....

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. 

Progress!!

A few days ago we were back at Vanderbilt to check on my progress since the IV steroid infusion treatments started. I’ve had four infusions (I have 2 left at the current dose then 6 at a lower dose). 

Both doctors and all of my tests point to significant improvement! The infusions are reducing the inflammation which has shrunk the eye ball back to an almost normal size, moved the eye up for better symmetry, and MOST IMPORTANTLY... the pressure on the optic nerve has been relieved. This was the largest concern since that little nerve makes or breaks your ability to see. I’m a tangible person so while I tend to use what I look like as a guide to what’s going on, it really doesn’t matter if that nerve is still compromised. 

Unfortunately, I remain in a patch. The double vision issue is muscle alignment which can’t be fixed with a prism (actually, it sounded like it could be fixed but it wouldn’t last long since everything is changing so much). Needless to say, I am pretty disappointed. We discussed radiation treatments and/or muscle surgery to fix the double vision but it is something that has to wait. 

The plastic surgeon said she is delaying surgery for 6 months unless something changes. I was very clear to her that we’d prefer surgery to not be an option. I told her that if I looked like this the rest of my life (minus the patch, of course), I could accept that. I was pretty clear that I have no desire for her to remove bones from my face. She said “fair enough”. I was sure to tell her that we have until January to get me as normal as possible because I have zero desire to look like a gargoyle in the wedding photos. She laughed and accepted the challenge. We will go back at the end of September and see where things are...hopefully it will be another appointment filled with good news!  I'm claiming it as fact now!

I met my new hematologist Thursday. We had some really good discussions about this whole situation. His preference is that I remain on blood thinners for the rest of my life. I am not necessarily opposed to that but also don’t want such a complicating factor attached to me forever, either. Lord knows I have enough of those as it is. We compromised with a full pulmonary embolism work up in 6 months to confirm that all of the blood clots are gone and we will reevaluate.  However, I've since seen my pulmonologist as well and she also wants me on blood thinners for the rest of my life.  So, it would appear I am going to lose that battle.  Which, I know is the smart thing to do.  Just kinda sucks ... blood thinners are no joke and really complicate things.  

park bench selfie waiting on them to bring our car 

he's still so sweet and patient with me, even when i don't deserve it

The stress and side effects are starting to catch up to me. My face is rounding out. I didn’t lose any weight this week. I’ve started to cry a lot. I scream at other drivers a lot. I snap at my family. I don’t laugh. My brain never stops. I can’t be pleased. Saturday we moved our girl back to school and I’ve been a mess since. Steven’s class reunion was this past weekend and I sent him alone. I just couldn’t find my “fake it till you make it” mojo. 

This too shall pass

This is only a season

Count your blessings 

It’s not that bad

Praying for those words to settle in my heart and replace the medical misery. I’d appreciate your prayers, too. 

Drastic

Since I hit publish on my last post, things have been all kinds of crazy!

I mentioned before that my vision had gotten worse.  Well, within hours of leaving my infusion I was no longer able to see and had to patch my eye.  And then it wouldn't stay shut so I had to tape it shut and patch it.  My boss made me contact Vanderbilt about the change.  I suspected it was that my prism is too strong now that I have reduced inflammation but he thought I should have a doctor make that decision (I'm really good at thinking for the doctors).  So I explained everything in an email and sent it off and went on with my day.  I learned really quickly how to drive with one eye; made the most stressful trip in Walmart for 3 items I had to have to bake a cake for the next day (no confidence, scared of what I looked like, blind on one side and having to walk with my left arm out to the side to keep from bumping into stuff.  Man, peripheral vision is important); and baked the cake.  I decided to take the patch off when we went to walk since I didn't need to see super well.  I took off the tape and patch and was stunned to realize my vision had gotten significantly worse.  There was no way I could use my left eye. It hadn't been more than 4 or 5 hours and I went from really blurry to can't make out anything.  I couldn't handle it so I quickly retaped and patched my eye.  If it is taped closed I can't see what I can't see and we headed out to walk. Right when we got parked, I got an email from Vandy.  He said it could be any number of things, including what I had mentioned but the only way to know is to see him in clinic (which means a day off work and finding transportation).  Steven and I talked and decided to ask about the risk of any permanent damage in the next 2 weeks.  I'm not going to risk permanent vision loss but I don't want to run to Nashville if I don't have to, either.

Thursday night I was wide awake until 4:30am...hello steroids!  I ended up with 2 hours of sleep.  I had a super crazy day at work and literally flew through it all.  I was wound up tighter than a banjo string!!  But I felt SO GOOD!  For the first time since March, I didn't wear my glasses.  Since my bad eye is patched, I put one contact in and even added a tiny bit of mascara.  Friday was a really really good day from every aspect.  I haven't felt good in months.  We even walked on our off day and added almost 1/2 a mile.  When we got home I went straight to the shower and when I dried my eyes and opened them I realized    I CAN SEE!
I kept looking around and there was only 1 image!  It honestly took me a few minutes to register what I was seeing.  The eye still needs correction (that's a different kind of blur..it's hard to describe but my TED blurry is different from my "you need glasses blurry") but HOLY COW I'LL TAKE IT!

Of course, I ran downstairs and excitedly told Steven the good news!  I'm breathless with excitement and run back upstairs, grab my phone to text my people, remember I've been meaning to look in my mouth, hit the flashlight and there it was. Thrush.  Talk about a buzz kill.  My asthma inhaler can cause thrush so I am super vigilant about brushing my teeth after every dose.  I suppose the steroids are tougher on my immune system than my toothbrush and Saturday morning I was at my PCP getting mouthwash and pills.

I didn't know this doctor but I think this all happened for a reason.  She is the only person to say anything about me being at a high risk of developing steroid induced diabetes.  She checked my blood sugar (it was 90 fasting in July and it was 114 fasting yesterday) and we talked about monitoring.

I can't develop diabetes.  I refuse.  I am going to fight this tooth and nail.  If it happens anyways, well it won't be because I didn't try.  I have cleaned out the cabinets, grocery shopped and prepped.  I am contacting my endocrinologist office to see if they have dietary counseling available so I can be sure that I am doing what is best for all of my complicated medical issues.  As of this morning, I have lost 21 pounds since February but sugar and carbs are my language and those are the very things that are the worst for me.

So you guys might want to light some candles and pray for my people....steroids and diet changes are happening and I'm really hoping we all make it through.   I have evidence that the treatments are working in a drastic way and now I'm going to act drastically to combat the ill effects.  Friday I felt like I couldn't win for losing; that I would love for just one time something to improve without something else falling apart.  But that's not how Anne works.  My body reminds me of this day after day. Sometimes, drastic is the only response.

dras·tic

adjective

1. likely to have a strong or far-reaching effect; radical and extreme

Infusions 1 and 2--DONE!

I’ve been waiting for something to happen to update from last Monday’s infusion and well, nothing’s really happened. I’m currently hooked up receiving my 2nd round so I thought I’d catch y’all up while I wait.

I had all the feelings in my tummy from the moment I woke up Monday. Fear of the unknown I suppose. Planning types like me need to know exactly what’s going to happen. I knew I would be fine, I wasn’t scared. Just .... dread.

It took longer than I expected for several reasons but once we got going it was simple. At one point I had an IV going in on the right and 7 tubes of blood being pulled from the left. (I don’t know why I have to give all the blood these days but this is getting out of hand). I felt fine through the whole infusion and the only way I knew I was even hooked up to anything was the terrible taste in my mouth. I headed back to work to finish the day, stopped at the store, cooked dinner and walked like every other night. And waited for the side effects to kick in.

The next day, for about a 2 hour period but off and on, my face felt like it was going to melt off. So I picked up a little desk fan figuring this was going to be a thing and well, 10 days later & I’ve turned it on 2 maybe times. I haven’t had any of my normal steroid side effects. No hunger, sleeplessness, hot flashes or water retention.

As far as the effect on the eye...the swelling has reduced significantly. I am able to wear my glasses closer to the bridge of my nose than I had been (my eyeball was so pushed forward that my glass lens would push against my eye so my glasses had to sit more on the end of my nose so that I could blink). The eye isn’t as pulled down either. I am taking pictures through this whole process and I’ll get brave and post them one day. Maybe. 

My vision is not improved and is actually worse. My hope is my prism is no longer the correct strength because there is reduced inflammation. The constant watering has eased up significantly.

This infusion has gone as well as the first one.  No issues except for my veins being difficult.  I came prepared with my wedding planner, AirPods, water, chap-stick and a fresh pack of watermelon Hubba Bubba gum to mask the terrible taste.  I'm listening to my favorite playlist, working on some wedding stuff and the time is passing nicely. I'm getting an ice coffee afterwards (I fully reward myself at 42 just like my parents did for me when I was 4.  Then it was a McDonald's ice cream cone though) then I'll head to work and life goes on.

I’m really hoping the side effects stay at bay but I’m realistic and know that likely won’t happen. Unless something crazy happens, I’ll update again after my Vanderbilt appt. on August 17th....My boy is getting married in January and wedding stuff is way more fun to work on than this stupid eyeball of mine.

Ask the Googler

The diagnosing ophthalmologist had shared his (very limited knowledge) of TED, the endocrinologist wasn’t much better and Vanderbilt was taking forever and I needed info, so I turned to the Googler. (I typically do not do this until I have the majority of the info from my actual physicians so I have a little better idea of what is real and fake info. I am well aware of the dangers of internet doctoring but I already knew I didn’t have the cancers so I ignored that Google result). I was able to find some info (very little regarding TED & Hashimoto’s. The vast majority were Graves & TED. I have Hashimoto’s) and I found ONE Facebook group (again, vast majority have Graves). The group isn’t very large but has members from all over the world so I have to pay attention to where the poster lives as there is a big difference in the way this is treated in America and Europe. I am careful about visiting the group because honestly, it can get super depressing super quick. It’s like every worse case scenario, horrible side effect & rare reoccurrence are all in this group and I just can’t see that all of the time. Over the next several weeks I was able to gather a fair amount seemingly accurate information though.

It took about 4 weeks from the CT until I got a call from Vanderbilt but they got me in just a few days later. We weren’t sure what to expect, or how long it would take.

We were there 3 hours, I was seen by 3 different “technician” type folks, plus the doctor, that all did a different test and each did multiple tests.

.

.

.

Lights on.

Lights off.

Up.

Down.

Left.

Right.

Waiting room 1.

Click when you see the lights.

Keep your chin down.

Waiting room 2.

somewhere near the beginning they needed to do tests without the prism. Instinctively when you put your glasses on and open your eyes, you expect to see clearly. I took off my glasses, she took off the prism, I put my glasses on and opened my eyes. I gasped and reached behind me for Stevens hand and tried to speak. I couldn’t see anything close to clearly. The double vision was so bad. I couldn’t begin to make sense out of what I was seeing. He squeezed my hand and the PA was super sweet while I tried to pull it together. I kept apologizing and she was reassuring me that such a vision change is a valid reason to cry. 

Glasses off.

Eye drops.

Wait.

Eye drops.

Wait.

Glasses on

Waiting room 1.

Waiting room 2.

Back to 1.

Measure pressures.

Stay in 1.

Move to 2.

.

.

.

I met with the PA for Dr S (ocular plastic surgeon) and then Dr L (neuro ophthalmologist). Dr L came and got us from the waiting room and everyone I had met with that day files in behind us. We talked for a few minutes and he again confirmed the diagnosis. He asked me to tell him what I knew about TED. I told him what I knew and how I knew it and we were all pleasantly surprised that my information was pretty much right. This appointment established my baseline and the treatment plan was to follow every 3 months with the first surgery possibly being in February/March of 2019. American “protocol” is to wait 12-24 months for the disease to burn out, then the first surgery. Dr L suspected they would operate at the 12 month mark for me since we were unable to find a prism to completely eliminate the DV & my left eye is very involved but that I would need to be evaluated by Dr S. He said that if I have any significant changes or vision loss that the plan would be escalated or they may try steroids & radiation (not preferred) depending on the what we were dealing with. But the vision loss can become permanent and they don’t want to wait to act. So we made follow up appts to repeat the tests and meet with both physicians.

Which brings us to present day......

I did all of the testing (minus a few of the drops) and the waiting room 1/waiting room 2 shuffle. Dr L saw me first and asked if I had seen Dr S yet that day (no, I see her after you) and his response (with a furrowed brow) was that he assumed not because she would have found him immediately regarding the test results. I went on to tell him I need new glasses (see how I ignored something important again) and....he cuts me off and says you can’t get new glasses now because they won’t hold for long and based on these tests you are headed to surgery soon. He asked me about the status of my blood clots (short answer..still on blood thinners, lab number increased instead of decreased), shuffled his papers together, said follow me. Took us to waiting room 2, went around the corner and found Dr S. A few minutes later he walked by, said she would explain everything, see you next time. We weren’t sure what to think. I was excited at the idea of surgery. My mind was skipping ahead to seeing well, looking normal, regaining my confidence and independence. I’m thinking about when it makes the most sense to do it...holidays...Isaiah & Amber’s wedding..finances. My mind was spinning with details and ignoring the seriousness. Vision loss. And I’m planning. Special talent, I’m tellin ya.

After a short wait, Dr S comes and get us. Pleasantries exchanged, I answer a gazillion questions about my ridiculously complicated medical file. I need to have orbital decompression surgery, it seems the muscles have thickened more and are compressing the optic nerve. This explains why when it was time to cover my right eye and read the letters on the wall using my left, I saw nothing but the light from the projector. No letters. How about now? Nope. How about now? No. Now? Nothing. Okay, what about now? E! Yup, the big E at the top of the chart. 

My eye has swollen and is bulging so much that the lid doesn’t close all of the way. So this is why my eyes hurt so bad in the middle of the night. They are drying out because they aren’t covered. I have gel now for that. It helps tremendously.

There’s a problem though, because of the blood clots and my health they don’t want to operate. It’s a risk they don’t want to take unless necessary. So, we are taking the European approach which is high dose steroids and possible radiation. Thanks to my own researching I was already familiar with this and knew some questions to ask. Tomorrow I will begin a 6 week series of IV Solumedrol (500mg) infusions followed by 6 weeks of infusions of 250mg Solumedrol. We were able to find an infusion clinic here in Knoxville, and only 7 minutes from my office, where I will go weekly. They said it takes about an hour and I will be able to go to work after. The side effects sound like they are about the same as oral steroids, but way more. Oral steroids for me cause sleeplessness, red, warm, puffy cheeks, generally hot all of the time (and I already have hot flashes thanks to the blood clots eliminating estrogen pills), irritability and my stomach is a bottomless pit. So yea, this should a really interesting season in our house.

I will have had 4 infusions when I am re-evaluated at Vanderbilt in August. I will have seen my hematologist the day before so I’ll have updated blood clot labs and we will make plans for the next step then. It all hinges on the test results.....Could be stay the course, could add radiation, could plan the surgery. It is all very much up in the air.
Which makes it really hard for me to plan ....... 

Blood Clots Don’t Cause Double Vision?

So how did I get here??

At the end of January I started experiencing some shortness of breath. I was knee deep in dealing with Steven having the flu and the worst back flare up he’d ever had (which led to a back surgery in March) and kept ignoring it. It seemed to me that my vision was getting worse as my breathing was worsening so I decided they had to be related (this is one of my special talents, finding ways to ignore things). When I finally went to the doctor, he told me that nope, that’s not a thing and I need to get to an eye doctor. The breathing deal went downhill quickly and I landed in the hospital for a week with bilateral PE’s. The double vision got worse and worse and I found myself closing my left eye the majority of the time. After I got home I made an appointment with an ophthalmologist to see what the deal was.

My eyes and vision were tested in more ways than I ever imagined possible. He kept asking me about my thyroid and clarifying that I have Hashimoto’s and not Graves. Finally, he told me that he was ordering a CT of my orbits to confirm but he was pretty certain I have TED. He gave me a little bit of info about it but was quick to say the folks that treat this would explain more. He was able to fit me for a prism that sticks on to my glasses lens (that day was the last day I’ve worn contacts) and eliminates the majority of the double vision. He was clear that he couldn’t treat me and that he wasn’t sure anyone in town could.

I saw my endocrinologist who was stunned to agree with the diagnosis. He told me that he was sending me to Vanderbilt for treatment. He’d only ever had 1 other patient develop TED and she was treated there with great results.

The CT results confirmed the diagnosis and I was referred to the Vanderbilt Eye Institute. I’ve had 2 visits there and my next post will get the backstory caught up and I can write like I need to. I find myself already forgetting different aspects (I’m a complex medical mess and sometimes details muddle together).