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.