Thymoma Part 7: Surgery

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Yikes! It’s been months since I updated! I’m so sorry.  Here’s a brief run down on my hospital stay after surgery…

Leaving my daughter behind to drive to the hospital broke my heart. She begged me not to go.  We had our special superhero bracelets on and I told her everything was going to be fine and not to worry.  Meanwhile I was scared to death inside!

I dressed in my Wonder Woman t-shirt and my favorite Wonder Woman pajama pants.  I wanted to be super comfy AND call upon my inner “super powers” to get me prepared for this surgery!  For once, I was not in any hurry to get where I was going.  I didn’t want the car ride to end. . . I kept thinking. . .should I have written a letter to my daughter in case I didn’t come home?  NO WAY!  Writing that letter would have been bad luck.  I was coming out of the surgery just fine and would be going home.  I had to come home. . .there was no other choice.

We arrived at the hospital and had to go through the boring paperwork, signing away my life and paying the silly copay nonsense… Then I was taken to a surgical “waiting room” where I got to relax on a hospital bed wearing the finest in luxury hospital gowns… ok. It was a regular unflattering, breezy gown.  I looked hideous in it.

Quite a few tears were shed.  The nurses and doctors were so compassionate and wonderful.  I had a team of anesthesiologists just for me!  Their job was to ensure I didn’t die. I loved them. (We know that people with Myasthenia need to be super careful with anesthesia and muscle relaxers.  It’s critical not to get the wrong meds!). One particularly nice anesthesiologist came in to do my spinal nerve block and he told me he was aware of Myasthenia Gravis and even spoke at an MG support group once in Tucson!  (Awesome! A doctor who knows about MG! I made a mental note to look up this group when I got better.) The best thing was he offered me something to calm me down.  I gladly accepted.

Nerve block, an anti-anxiety something-or-other and IVs were soon in place… I was ready to go.  OMG! I was so nervous!!!!  I mean, incredibly nervous.  I did not know if I’d wake up with a bunch of small incisions (robotic thymectomy) or with my chest completely opened and stitched back together again (full sternotomy thymectomy if the tumor was larger than anticipated or adhered to the lining of my heart). I prayed for the former. I chose my surgeon based on her expertise doing robotic cardio-thoracic surgeries.  I wanted the less invasive option and potential for a faster recovery.
They wheeled me into the freezing cold operating room and I shivered uncontrollably.  They gave me a few layers of warm blankets after transferring me to the OR table… They put an oxygen mask on my face and I was told to count to 10, but only remember saying 9….Boom! I was out…

Next thing I knew I was waking up in recovery.  My husband was sitting next to me.  I was super groggy and nauseous.  I tried to look at my chest to see if they had to do then sternotomy or not and I didn’t see a big scar!  So, I knew that I had the robotic surgery.  I was so relieved.

In the recovery room after surgery, I was sooooo cooooold. I couldn’t warm up no matter what they tried to do! I was finally given an electric warming blanket of some sort. It took forever. I was shaking uncontrollably. It was scary. I still don’t know what caused that.

The more aware of my surroundings I became, I realized I had on these cool inflatable “boots” that would inflate and massage my lower legs and feet at regular intervals. That helps keep the risk of blot clots at bay…

I also noticed my mouth was incredibly dry I was so incredibly thirsty, yet so nauseous I could not fathom drinking anything! So, the nurse finally gave me some special mouth paste for dry mouth. It tasted minty, like toothpaste.

It was glaringly obvious as time went on that nothing was helping my nausea.  I couldn’t open my eyes because it felt like I couldn’t focus and that made me more nauseous.

Eventually I was stable enough to transfer to the cardiac ICU.  While I was in the ICU, we had to figure out how to get my nausea under control, as I could barely open my eyes or even slightly move my head. Finally, they changed pain meds around and I was able to open my eyes and try to sit up. Big improvement!!! I was told I had to be able to sit independently and get to the bathroom before I’d could be released to go home and that seemed like an impossible feat at that time. But at that point, my main goal was to get myself out of the ICU so I could see my daughter!  They would not allow anyone to visit except for my husband and even he was limited to certain times. It was pretty lonely.

Somewhere between recovery and getting set up in my room in the ICU, I lost my stuffed bunny from my daughter.  She gave me her stuffed bunny to keep me company in the hospital😢. Later, she brought me a stuffed hamster.  The nurses were on high alert looking for the bunny.  She was nowhere to be found…I told my daughter that she probably went to comfort a child who needed a friend… So, the next time she visited me, she brought me a stuffed guinea pig to keep me company.  I kept a close on on this one!


I also lost my glasses, but evebtusll found them the next day … in the large puke basin that followed me to my ICU room, of course!  Isn’t that where everybody stores their glasses after surgery when they are puking and nauseous!!???

MY ICU nurses in the cardiac unit were wonderful. My only complaint was one had on strong perfume…but overall they were all sweet, kind, very good and helpful.

One nurse saw me struggling to cough so she gave me a heart pillow (ha! I could barely breathe! My ribs felt broken). It helped some. But omg…it hurt so bad to breathe, let alone cough or vomit. My chest and ribs on my right side hurt so much.

Another nurse accidentally stabbed herself with one of my needles.  So, they had to do an extra blood draw on me to make sure I didn’t have anything she could catch from a needle.  I felt bad for her as she shared that it had been years since this happened to her and she felt badly that it happened. I assured her she had nothing to worry about.

Speaking of needles. . .they had a heck of a time with my IVs. . .  More pics of the gorgeous bruising that spread out and decorated both wrists over the next few weeks in my next post. . .LOL

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My difficulty breathing was mostly due to pain, but I was given regular albuterol breathing treatments, as well. It seemed to help a little.

At some point while I was in the ICU, two people from Physical therapy came to my room and tried to get me to walk. I couldn’t even stand.  So much pain.  But I was told I couldn’t be transferred to a regular room until I could sit up and transfer to a chair.

Once I was transferred to a regular room, the care was not the same.  Ugh. The nurses were not as attentive and not as friendly.  The first nurse I had all night long forgot to attach my heart monitor!  Nobody noticed until the next shift.  Guess a flat line on the monitor at the nurses’ station for Bed 1 was not a concern ALL NIGHT LONG??  LOL

The worst part of the hospital stay (once the nausea was under control) was when they pulled the chest tube out!!!  The doctor told me it wasn’t going to hurt much. Lies!! Such serious LIES!!!  I felt like my lungs came with it. The doctor stopped in the middle of pulling because I screamed (well tried to scream with a chest that felt like it was broken and hardly any air coming out. Lol) and the tears started flowing…  she finished and then apologized.  She said it was “stuck” in there.  Oh wonderful!  But anyway,  once that tube was out, I was on a mission!!! Get me HOME!

Killed me that my daughter wanted to stay with me after she’d visit.  She wanted me home.  That was my motivating force to push through the pain.

A dear friend came to visit and brought me magazines… One was in espagnol! But Pitbull was on the cover and I guess she got distracted! Who needs words!? Forget the articles…I can enjoy the pictures!  Lol!

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Nurses in the regular room were not as gentle or caring…one reeked of cigarettes and onions, which is an awesome combination when you’re nauseous…. BLAH!!!!  One nurse just didn’t show up at all when I rang for help! Fine. I’ll take myself to the bathroom! I gotta get outta here!

Before I was able to get out of bed by myself, they gave me a commode by my bed because the thrown was too far for me at first (especially when I had to drag the port and box it was attached to around with me) Omg. Stage fright with a full bladder!  NO FUN!!!  That was NOT going to work!  I had to get myself to the bathroom!  ASAP!  So, I pushed myself really hard to get past the pain to walk and made it to the bathroom all by myself the next morning.  I knew I was going to get home fast after that feat. Now, all I had to do was walk around the nurses’ station in the hallway in order to be found fit to go home!  So, I had my daughter walk with me… she was so happy for me when I did it. The nurses praised her for being a good helper. It was so cute.

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After that, we just needed the doc to release me!  Then I could go HOME.

More on going home later…promise it won’t be a bazillion months between posts again… so stay tuned!

Here’s a (graphic!) video that shows how a general robotic thymectomy is done… I found it on YouTube.  It’s not me!  In fact, I am pretty sure it is a guy. . .and this one in the video was performed in India!  Lol Not certain if the equipment is exactly the same as what was used on me, since things are always changing in the medical world and my surgery was a few years after this video was made.  But it gives a good idea what was involved.  So if you are not squeamish, take a peek at the video!  It does get graphic. . .so beware!!!!!

Robotic Thymectomy (credit to Dr Arun Prasad, MS FRCS, shows the steps of robotic thymectomy surgery for myasthenia gravis at Apollo Hospital, New Delhi, India on YouTube from 2013)

Wanna “C” How Much I loved Gym Class?

I stumbled across this beauty the other day while searching in the office closet for a photo album… I had to share.

So…What does a star student earn in gym class in elementary school and junior high when she has an undiagnosed neuromuscular disease?

Straight C’s…oh yeah baby!

Despite most students declaring PE class was an easy “A”…I am pretty sure I NEVER earned higher than a C and I believe I even got a D or two…

Was it because I was disrespectful to the teacher? For not participating and deciding to sit on the sidelines and paint my finger nails?

NOPE….it was simply because in their eyes, I was never participating enough…never trying hard enough…not putting forth much effort…always failing the state/district physical assessments…I was always the last one finished…always being yelled at for not running when we were supposed to be RUNNING, NOT WALKING!   I was always being told to pick up the pace, try harder, stop dawdling, stop being lazy, stop holding everyone else up, stop trying to get out of doing the activity and DO SOMETHING!!!

The sad thing was…Believe me…I was trying harder than anyone else in that class with almost almost ZERO to show for it. Nothing except for sweat, nausea, frustration, tears running down my cheeks, and loss of self confidence…

PE literally beat me up and made me sick, every week.

My body simply failed me every time.  There were rare occasions when I felt good and could participate halfway normally, but not enough to ever earn me an A, or even a B, for goodness sake!

I used to pray we wouldn’t go outside for gym class when the weather was nice, while my classmates all prayed that we would!  For me, that meant extra stairs to navigate.  Extra effort and some days I just did not have the strength to do it.

I used to cry and beg and plead with my Mom to PLEASE, let me stay home from school on gym class days.  I remember kneeling on the floor in the kitchen, sobbing.  I’d BEG her to please write me a note so I didn’t have to participate, at least!  Something!  But she didn’t have a good reason to and she didn’t.  I can’t blame her.  She didn’t realize how bad it was for me.  She wasn’t there to see it.  She wasn’t in my body living it.  The doctors didn’t believe me, so why should she?  It was a terrible cycle.

I used to pray for no assessments.

I used to pray for no running games.

I used to pretend to tie my shoe or trip so I would get tagged out early in a game since it meant I got to sit out. But…If being tagged meant you were “it”… I was so screwed. I could never catch anyone…

I used to pray we wouldn’t play basketball. Especially in Junior High when I had a gym teacher who thought he was so hilarious.  He’d proclaim with a huge smile on his face that anyone who couldn’t make the “easy” basket with the basketball, was a “Jerry’s Kid”…  Nice.  Because I WAS A JERRY’S KID!  Thankyouverymuch! And everyone laughed at anyone who missed the shot and chanted “Jerry’s Kid!!”

I knew I would never be able to make the shot and had to brace myself to be humiliated.  Jerry’s Kid!!!…😢
I was always picked last for teams, unless a friend was choosing the team that day.  I always heard the grumbles from the athletic boys and girls when their team got “stuck” with me.  It stung every time…

Sad.

I broke down one day and told my mom that the teacher was calling the kids “Jerry’s Kids” if they didn’t make the basket, or if you were last in a race or whatever…  By this time, I had a generic “diagnosis” that was not really my true diagnosis, but at least it said I had SOMETHING going on and my muscles were not normal (congenital myopathy)… So, my mom wrote a note firmly asking the teacher to STOP making fun of Jerry’s Kids and explaining the importance of the MDA Telethon and Jerry Lewis.  I trembled as I handed him the note before class.  He read it and called me into his office which was in a corner of the gymnasium right by the locker rooms where everyone filed out and stared…wondering if I was getting in trouble?

He apologized.  Told me it was “all in fun” and he was not making fun of ME ! Well. That didn’t feel like a very good apology. But whatever. He says he’d stop and he’d make sure he would make the kids stop chanting it, too.

great…

I didn’t know if I was relieved? Or mortified?  I hated being “outed” as being different even though it had to be so obvious!  I was scared the teacher would call ME up in front of everyone and tell them to stop making fun of Jerry’s Kids because I was one… I really just wanted to crawl in a hole for the rest of the school year…

That afternoon, on the bus ride home…a classmate who rode the same bus as I did, and who was NOT at all nice to me…cornered me on my way onto the bus and wouldn’t let me pass him. He got in my face and said:

“Hey, Jerry’s Kid!  I got your application for the Special Olympics!”

Then he burst into laughter.  His friends started laughing too…  I felt my blood boil, my stomach turn…tears well up in my eyes.  I hated him!  I hated myself.

I can’t remember if I said anything in return. I didn’t tend to fight back in those days. I’d just hang my head and try to pretend to disappear… So, I think I just sat down. But I do remember that I tried to mask my tears, but my friend saw them.  She told me not to listen to him…that he’s stupid, etc. and tried to be comforting… but it didn’t lessen the sting. The damage was done. He saw me crying and starting making baby cry noises and called me a baby… it was a really long bus ride home.

Despite eventually knowing I had some sort of unknown neuromuscular disease and that I was a “Jerry’s Kid” I still got a “C”… nobody understood me. Not my doctors, not my parents, not my teachers and not my friends. It was a lonely place to be…inside my head. Filled with anxieties and fears and unknowns.

But hey!  At least the gym teachers never failed me!  I passed!  Lol

If only the teachers knew just how hard I was really trying!  How much determination and power it really took for me to just walk out onto the field…to lift the basketball over my head…to climb onto the balance beam and not fall…to dodge the ball flying at me…to do even one jumping jack…to walk when I couldn’t run…to not fall down in front of everyone… to simply walk the stairs to get to class where I knew I’d be humiliated…

If only they knew….

Thymoma part 6: Night Before Surgery

Note: I actually wrote the following post last year, right before my surgery… I added a few extra details but mostly left it as-is….so don’t be confused!  I’m not having surgery tomorrow!  I had it already and obviously lived to tell about it!  Yay me! 😊

‘Twas the night before surgery, and all through my house…
Not a creature was stirring…except of course for ME and my nervous energy, my pacing feet, my nerves, my racing heartbeat, the knots in my stomach, the tears flowing down my cheeks, my endless worries, and my shaking hands…

So…not only the surgery but also the thymoma treatment options are on my mind and causing me major anxiety this evening.😢  look here: Thymoma treatment options

(take a seat and grab a drink, it’s long). 

Tomorrow is my surgery. It’s not an easy one. 

 The risks are…the doctor is going to be poking around and removing the mass from an area between my lungs and above my heart. Major arteries run along that path. My tumor is sitting above my heart and my thoracic surgeon prepared me for the possibility that it could be attached to my heart requiring more extensive surgery than just the thymoma removal… 

Praying we caught it early enough that the tumor hasn’t attached to anything else besides the thymus (which I don’t need and don’t care that they are taking it!). 

I am praying no Cancer cells are found outside the thymoma… I don’t want to have to undergo radiation or chemotherapy.

I pray I’m telling the truth every time I reassure my sweet daughter that I’ll be fine! That everything will be ok. (That literally rips me apart each time she looks for reassurance because I truly don’t know exactly what I’m facing…)

My stomach is in knots. I’m not hungry. Which is good because I’m not allowed to eat after midnight anyways!  But I don’t want to be dehydrated either, so I’m forcing myself to drink electrolyte water and I choked down a healthy protein drink for strength just before midnight.

My head hurts. 

I’m holding back buckets of tears…yet somehow there are still tears flowing… My tear bucket is FULL and leaking 😢

I cry when nobody is watching. I cry in the shower and after everybody goes to bed.

I want to talk about it! 

 Yet, I don’t. 

I have a hard time answering texts! (Me? Shocking I know!). 

I want someone to listen to me pour out my feelings…yet, I’m feeling vulnerable and not wanting to “burden” others and be a Debbie downer.  

I’m putting on a very strong front  because I want to convince others I’m fine and they don’t need to worry!  If they’re worrying, then I’m worrying… Ok, worrying even MORE, I guess. So please don’t tell me you’re worried!  

Honestly, just having someone to sit with me, quietly…and not talk about it, is so comforting. 

I have an amazing support system of family and friends. I would not get through this without them! The outpouring of love and support warms my heart❤️

My dear friend planned a special morning for me on Sunday. We had breakfast and she treated me to wonderful manicure and pedicure. ❤️

Another dear friend gave me a special, beautiful bracelet. 

My dear friend/cousin sent me a gag gift (related to my fear of going braless after surgery and needing to find alternatives to control my “girls”) and a Starbucks gift card. 

Another friend gave me a Supergirl blanket she handmade and movies to watch and comfy socks to wear… 

My wonderful in-laws babysat the dogs and cat and helped make a nice little getaway to the beach in California with my husband and daughter possible…  

I have people texting and writing to check on me daily.  

I’m blessed beyond words!

I’m not alone❤️

I can’t thank people enough for their love and support. I have a hard time expressing myself sometimes when it comes to receiving love and gifts… I’m much better at GIVING and making others happy❤️. So I hope people know and understand how grateful I am. 

 I’m So humbled…💕💕💕

I hid my tears all day as Hannah asked questions and most of all when she begged me to let her come and stay with me at the hospital…  

This is tough. 

As a mom, I am more worried about Hannah in all of this than myself… yet I’m SOOO determined to bounce back ASAP. It’s not even a question! I’m going to recover as quickly as humanly possible. I’ll do anything to get back to normal. 

I hate this. I’ve been so positive for so long! 

 But if I can be honest for a moment…today was a rough day with Hannah. So many tears. She doesn’t understand why I need to have surgery and stay away from her. Breaks my heart. All my wonderful well calculated answers I provided hardly convince me…why should they convince her? I don’t wanna be away from my family. I’m scared of being under anesthesia for hours…

I’m scared what they will find when they open me up… 

I’m just plain scared.  

All the well meaning wonderful people ask me how they can help me…help us… I don’t even know how to answer anymore. The only thing I can think of is make Hannah happy! Distract her! Who cares about me??? Focus energy on her. Make sure my baby is ok… I’ll gladly endure any amount of pain to make sure she’s ok in all of this…😢

On another note… 

Life keeps moving. Its not stopping for me to feel sorry for myself! And it certainly isn’t doing me any special favors in the last 24hours… I got Tabasco in my eye and got stung by a bee😕. And the bee sting on my behind is huge, red, sore and itchy today! 

 I’m a mess. 😕 plain and simple! 

 So, say a prayer for me…

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Ok…diversion…Wanna hear more about the bee sting?  It’s a fun story… 

I was spending a lovely relaxing day at my favorite resort (JW Marriott Starr Pass) with my daughter, her friend, my friend and her daughter and friend!  


It was almost time to leave and I sat up and swung my feet over the side of my lounge chair to put my sandals on and felt immediate burning pain.  Awesome.  Bee or wasp sting! Ugh!!!  I pulled the stinger out and felt nauseous.  Darn it.

I calmly asked my friend’s daughter to watch Hannah and her friend in the pool while I went to ask for Benadryl since I tend to react badly to certain bug stings…

I headed to the front desk and they told me “Loss Prevention” would be down to see me soon…  Loss prevention?  Really!?  Am I property or a person?  Lol I waited in the lobby and up walked a child about 20 years old… 

“What’s the problem ma’am?”  

“Ummm.  A bee sting. Do you have Benadryl?”

“Did you get the stinger out? May I take a look at it?”

“It’s ok.  I gut the stinger out.  It’s on the back of my thigh right near my ummm…my butt”

“Ok”. Staring at me waiting for me to make a move…

Seriously!  In the lobby?  Ugh… Ok…

So I had to lift up my swimsuit cover and bend over and show him my bee sting backside/thigh in front of everybody! And this is all I got for it…


Just call me “sweet cheeks” or “honey buns” 😂 

This is my awful bee sting … Totally HOT!!! And itchy…and painful…and gross… Lol!

Thymoma Part 5: Hello Doogie Howser, MD

Soooo… My appointment with the thoracic surgeon did not go as planned.

My PLAN was the appointment would be uneventful and he’d send me home, telling me I had nothing to worry about!

Instead, I was sent home with a surgery date.

It was official.   I had suspected thymoma. He went over my MRI images in great detail… I couldn’t deny it.

But let me back up for a second… I have to tell you about my surgeon because that  became a story in itself!  Once I heard there was a possibility of needing surgery, I did lots of research. Lots of evenings were spent on google after my daughter and husband went to bed.  I did my research and learned a full Sternotomy was not the only way to remove thymoma.  I wanted to avoid a full Sternotomy!  I wanted the least invasive surgery possible. I wanted to find a surgeon who specialized in doing robotic thymectomies!

So, I found the perfect surgeon!  I’ll call him Doogie Howser, MD because he seriously looks like he’s 12 years old!  Lol!

I was thinking maybe it was just his photo on the hospital website but when he walked into the room I almost laughed. He looked like he could be my child!  But his credentials were awesome and he was an expert at robotic thymectomies so I was going to trust Doogie with my life!

I nicknamed his assistant surgeon “Dr. Belt Loops” because I immediately noticed he missed a beltloop on his pants with his belt.  Was this oversight a reflection of his attention to detail in the OR, too!?  This might be an issue if Doogie passes out, in the middle of my surgery, he needs a nap (because he looks so young and might still need naps! Ha!) or if he was otherwise rendered incompetent to finish my surgery!  Hmmm…Dr. Belt Loops  would be responsible for putting me back together and sewing me up if Doogie goes down!  What if he didn’t stitch me up completely and my lung fell out?  I’m serious!
Nah, I looked past the belt loop oversight and decided I just had to trust Doogie would last through the surgery and not worry about Dr. Belt Loops!

The worst part was facing scary risks and a lot of unknowns…which I hate!  We would not know if it attached to my heart or lungs or any other place until  Dr. Doogie opened me up and started poking around!
Doogie so bluntly pointed out that my tumor was sitting right on top of my heart so there was a strong possibility it could’ve grown into the lining of my heart…which would mean a full Sternotomy! As in crack my chest open… I was woozy thinking about that possibility. I wanted the least invasive procedure so I could recover quicker! I have a life I needed to get back to and a family who needs me! That’s why I chose Dr. Doogie.  He’s an expert at robotic thymectomies. I hadn’t thought about the possibility of needing to switch to a Sternotomy after starting a robotic procedure.  Now I was scared.

I sat in my uncomfortable seat, heart pounding…hands wringing in my lap…and I listened to Dr. Doogie explain thymoma, the risks of surgery (which I dismissed immediately because there was no way I’d die from an uncontrollable artery bleed out…and possibility of needing chemo and/or radiation after surgery if there were cancerous cells found outside the tumor.

Overall, I was really in shock and didn’t think to ask a lot of things I later wish I’d asked!
I sat quietly and just nodded and said ok over and over again as the surgeon spoke… well…until I freaked out on him when he said I couldn’t wear a bra for a long time after surgery due to pain…😂😂. Lol!!! I was suddenly flung back into the moment and I almost jumped out of my dear!  I was like “WHAT?!?! Have you seen THESE??? I can’t NOT wear a bra!”

Poor Doogie… He didn’t know if he should laugh or run?  Dr. Belt Loops was over in the corner laughing with his face hidden behind his file folder, trying not to make eye contact with me.  I clearly did not have a normal response they were used to hearing. Lol!!!

Now, I was officially panicking…

…Over not being able to wear a stupid bra!

Really!?!

I realize now that I freaked about the one thing I knew I could relate to/envision exactly what it meant!

Big “girls” plus no bra…equals not pretty.

As for the surgery?  I’ve never had a thymectomy before!  So, I had no clue what to even freak out about aside from what I was told!  So, I laid all my anxiety on being braless…

Then he showed me where the 5 incisions would go and he poked me by my right armpit/side of my breast.  That’s where the camera will go, I think he said…then he paused and looked at me very seriously.  “Are your breasts real?”

“Um…YES!!! ” (What the hell, Doogie? Didn’t your mom teach you manners? Lol)

“Ok good, because I don’t want to puncture anything.”

Ok then!  That’s settled!  Lol no risk of deflated breasts.

Picking a date was an unnecessary ordeal…I was throwing out all kinds of silly excuses for every single date he offered to me…and the date kept getting further and further out!  He reeled me back in and we chose a date in early October.  I’d be patient number three after his return from a two-week vacation.  Was that a good thing or a bad thing?  I settled on the fact that he’d be well rested and happy.

I lived to tell about it, so I suppose it was a good choice!

I was also thinking I’d get another 6 hours annual leave and 4 additional hours of sick leave in the bank by waiting a couple weeks longer!

After the appointment, I walked slowly to my car half dazed, deep in thought and worry.  I got in my car and started crying. I texted my husband and a friend.  Somebody, snap me out of this.  Tell me it’ll be ok!

How could this be happening!?? I don’t want surgery. But I also don’t want cancer. So, it was a no brainer. I needed surgery.

The date was set.  The countdown had officially started.

As I drove home, I realized my biggest fear at that moment was not cancer.  My biggest fear? Telling my daughter and seeing her scared little face looking at me for reassurance. I decided I was going to put it off as long as possible. . .

I was scared.  But, I can also tell you this…I was definitely in FIGHT mode. I was NOT going to let this stupid tumor break me…

Oh sure…I’m Feeling Soup-er. . .


I have been really trying to not put on my “mask” anymore. . .the one where I hide my symptoms from friends and strangers.  Yesterday at lunch, my mask resurfaced. . .I spent my whole childhood hiding, trying not to stick out…trying to blend in…trying to look normal when my body clearly failed me.
I never thought of it as a “mask” until a conversation with a dear friend earlier this year.  She has a mask she’s been working on shedding, too.  Our “problems” are different. But our masks served the same purpose. Don’t let anyone know you are suffering.  Don’t let anybody know you are struggling.A mask is a stifling and exhausting thing to wear and it does nobody any good!

 

I’ve been feeling so good starting this blog and sharing things I never shared with others before. Sharing my struggles from childhood that very few knew…and even those who knew probably didn’t know how deep it really went…  I don’t have any reason to hide symptoms anymore.  I’m not a first grader getting teased when I try to run anymore.  I’m not trying to avoid kids making fun of me and picking me last for their teams during gym class anymore. . . My  roller coaster is a lot more tame now. (See my post in May about my “roller coaster”) I’m a happy adult with so many blessings!

But every now and then, I struggle with something and it resurfaces. My insecurities take over and the mask is smothering me again.

Like yesterday…

Let me back up for a second though… I have been working really hard lately.  My job did not change, but expectations did and I was forced to work in the office 5 days a week after working at home two to three days per week for the past ten years!  That is a MAJOR change for me.  I braced myself anticipating that it would affect me physically, and it did.

It took a major toll on me.  By the time I got home each night,  I was exhausted. My eye lids felt heavy and blinking was a chore. My right eye drooped more than usual, and my muscles ached.  Typing at my desk was taking a toll on my  hands and wrists. I am not sure why, since I always type all day. Except that my  days were longer now, I was adding over an hour of driving to my day, getting less sleep, and stress was stealing a MAJOR chunk out of my strength. 

I starting noticing my hands trembling when I tried to do things that required fine movements or steadiness.  You should see me try to pluck my eyebrows or put on eye makeup! Ugh.  I developed tremors from muscle fatigue and my stupid disease fighting me every step of the way. For the most part, it was simply a side effect of everything and a small annoyance. I’m not a brain surgeon!  Steady hands is not required for anything I do!

Fast forward to yesterday. . .I went to lunch with a friend I had not seen in person for longer than a five or ten minute conversations in passing at school drop off over the past two months.  We talked by text, but you can’t see hand tremors or droopy eyes on text.  We set a lunch date because it’d been forever since we actually sat down and talked in person.

Chinese food!  Yum!  I haven’t had that in forever.  Perfect😊

We ordered the lunch special which comes with soup.  I ordered wonton, one of my favorites!  It was a small serving and looked delicious.  I dove in for the first bite and was immediately grounded when I realized my hand couldn’t control the movement needed to bring the spoon to my mouth without shaking and dumping the soup back into the bowl or all over me and the table.

Oh crap.

I couldn’t NOT eat it. But my hand was shaking so badly while I tried to eat the darn soup. It caught me off guard!  My mind started racing as I fought the uncontrolled movements.  I was failing. Back in the bowl the spoon went, over and over again. . .without a bite.  I’d stir it slowly, break off a piece of noodle, distract from the fact that I was contemplating how ringer the darn spoon to my face without spilling or looking like I have DTs or Parkinson’s!

I tried hard to concentrate on each small movement and make tiny adjustments to stop the tremor, while still trying to hold a conversation.  I tried again and again… holding my spoon at different angles, thinking that using different muscles might handle it better and calm the tremor. I finally contorted my wrist/hand in such a way the tremors were lessened just enough that I could finally take small bites without spilling ALL of it before it made it to my mouth.

I didn’t look up as I scooped my bites.  I didn’t want to know if she noticed.  I was embarrassed.

WHY???

I DON’T KNOW!!!

It is so SILLY!  I realize my stupid silly mask was on again, and it is like I am compelled to hide symptoms at all costs.  For NO apparent reason. . .  Once the mask is on, it takes over and I can’t use logic to talk myself out of it.

She is not a friend who would care if my hand was shaking!  On any other day, I should have been laughing it off! I’m really good at finding humor in my tough situations and not hiding. But that is how the mask works.  It makes me feel like I need to hide symptoms at all costs, regardless of how silly I look trying to accomplish something my muscles are failing at that moment…regardless of who is next to me and how supportive they are and non-judgmental they might be.

I didn’t need to “hide.”  She is the friend who sat in the ER with me all night and into the early morning hours when I had complications after my thymectomy last year. She is the friend who accompanied me on a Now I Lay Me Down to Sleep photo  session in the middle of the night where I was going to take photos in the hospital for a grieving family who suffered the heartache of a loss of a precious newborn child.  She assisted me in taking photos for HopeKids Arizona families with terminally ill children for their special annual family portrait event.  She’s a selfless caring soul. I KNOW she wouldn’t care about my stupid hand tremor. But for some reason, I was really embarrassed by it 😦
I have come so far working on removing my “mask” over the last couple years. However, every now and then it resurfaces and catches me off guard. It’s like the little kid in me resurfaces and suddenly I don’t want to be different.  I don’t want to call attention to my weakness.  The fearful  child in me resurfaces and I feel helpless.  Like I will never be able to do simple things like eat soup, without looking like a fool.
I don’t want to have problems.
I want to put on a smile an pretend I am normal…

Normal?Whatever that is. . .🙄

Mess with my meds? I mess you up!

Seriously!!??? 

I realize this is small potatoes compared to those fighting insurance on denied IVIG claims…but it’s the same issue!!!  

It’s infuriorating!  

Why does INSURANCE get to decide what’s best for my health?  I thought that was my DOCTOR’s job?  Afterall, she went to medical school, and she knows my medical history, she did the research and she she does the examinations!  All insurance did was assume something based on general knowledge about a medication without applying it to my particular disease!  

But who am I to argue?  I’m nobody… I just pay the premiums, copays and deductibles.  My bad!  I guess I’m better off being weak.  Perhaps you’d rather pay for a trip to the ER or a hospitalization for myasthenic crisis?  I can certainly arrange that by going by YOUR dosing instead of what my DOCTOR prescribed!

Thanks so much for your concern for my health BCBS! I feel so safe in your “care”……. you saved me from actually treating my disease instead of saving you money!  Wow, my priorities were seriously screwed up.  

May I take a moment to digress? Proud mama moment to share…

This is not related to MG, CMS or Thymoma…but is still worth sharing 😊

Yesterday, my daughter did something I will never forget… We were at the American Girl Store in Scottsdale and she had a shopping bag she was filling with accessories as she decided if she’d use the money she saved for months on those accessories or a doll she’s been eyeing for the past two years. She had a hard choice!…we walked in circles eyeing and touching everything as she tried to make her choice. So many pretty things!!! It was a bit overwhelming…until she spotted this beautiful doll on display with two other dolls. The doll had no hair. Her face immediately changed and her eyes got wide!…”Oh! Look mom! They have a doll with cancer!” She grinned from ear to ear!

I was pleased to see it, as well! Especially since it seems American Girl thinks of everything else to try to represent every kind of girl and interest.

Rewind to about two months ago…Hannah cried watching a video circulating on Facebook of our friends’ friend opening her AG doll equipped with a prosthetic leg that was custom made just for her by a wonderful charity organization… Sheer joy wrapped in buckets of tears as that beautiful child hugged her doll tight and exclaimed “she’s just like me”. Hannah’s friend has since ordered one, too. ❤️

That was an eye opener for Hannah.

She never cared if someone has blond hair or purple, what color someone’s skin is, or whether they can walk or need a wheelchair… Hannah loves you for being YOU! However, I don’t think she ever thought what it might be like to be in the other child’s shoes…until that video. She was asking me why the girl was crying so hard? It was a great question and prompted a good discussion between us. I guess it sunk in…

I also thought…Hannah has every imaginable medical accessory for her dolls…including two wheelchairs, hearing aid, casts, crutches, head gear…you name it! So, I thought she was going to change her mind and buy the doll with no hair for herself instead of what was in the bag❤️

But no…she did something I’ll never forget and makes me cry every time I replay the heartwarming interaction in my head…

She put down the shopping bag of accessories she was carrying and grabbed my hand. She looked me in the eyes and said with the most serious and thoughtful expression: “Mama? I really want to but that doll for H” …what I expected her to say next was, can YOU buy it for her? But no…she said “I want to use my money to get her the doll, and I won’t get a doll for me. I just want to make H happy. Is that ok?”

I was speechless…my eyes welled with tears. My daughter had the most beautiful selfless moment and I was about to lose control of my emotions right there in front of everyone in the store… I had to whisper my answer. I had to compose myself. Of course I support that beautiful decision! Yes!!! She reached over and grabbed the sales ticket to bring to the associate for ordering the doll…and I knew her decision was made❤️


I’ve always taught her to do things to make others smile❤️ But honestly, I also see how spoiled she is… Her playroom is ridiculous! So sometimes, I worry about her skewed view of the world. I want her to want happiness for herself, but also want happiness for others! Naturally, I worry she doesn’t “get it” sometimes… But this decision she made yesterday told me she absolutely gets it and she has a heart of gold. She truly cares for others and wants to make a very special little girl who has been through more than anyone can imagine…Happy!

Hannah was looking forward to this trip to the AG store for MONTHS! She saved money she earned and money her grandparents gave her to buy things she’s been eyeing for a long time… And in one second…one glance at a special doll who made her think of somebody besides herself…everything changed. Her priorities for that special shopping trip shifted to making someone else happy…and it was no longer about Hannah❤️ Her heart was content making another little girl smile. ❤ I could not have been more proud. I am so blessed to be her mom❤️

Thymoma Part 4: waiting, stressing, work stress, rambling, etc. (before I even find a surgeon)…

Before I consulted with a surgeon about the tumor, I had other health issues/questions related to CMS that I had to iron out first (heart palpitations and genetic testing). It was frustrating having to wait because all I wanted to do was talk to a surgeon…

When it rains, it pours, right?  Just hand me an umbrella…

In the midst of my appointments and waiting… I was trying to distract myself… Luckily I got to go see Kenney Chesney in concert around the time I was FULL of stress and anticipation of what was to become of my thymus tumor…

I’m usually a “glass half full” girl…
But sometimes, I need a refill! …And two shots of vodka or Fireball, STAT!!!  Wait…not shots, that’ll make me sick.  Make that two mixed drinks…something girlie and fruity!  Mask the taste of the alcohol cuz I don’t wanna gag.  Oh wait, two drinks will probably flare my CMS and then I’ll be stressed out AND weak…so, better just make that one drink… 

Oh forget it. Just get me a Starbucks latte and call it a day. Ok.Where was I going with this??? 

Oh yes… Glass half full…

Please, if I go down a lonely road and start wallowing in my sorrows, just remind me…The glass is NOT EMPTY! 

A wise friend told me on that Kenny Chesney night, as I complained about a sold out (hear me say AWESOME!) concert that was “packed like farting sardines”… Instead of sympathy, she smacked me back into the moment!  “Hey! Glass half full girl! Sit back and enjoy the music!”

Damn. She was so right! 

So, I did. 

I smiled. 

I sang.

I danced (if you can call it that…😂)

I lost myself in the moment and enjoyed the evening as if I had no worries.  …Then I lost the $60 I won on the Wonder Woman penny slot game I played before the show. Lol!!! But, you know what? I was ok! I didn’t beat myself up over it because I had a really good time with my husband at an awesome concert…oh, and STARBUCKS was still open at the Casino after the show ended😉 BINGO!!! I filled my glass that evening with Kenny and Starbucks!!😜

Footnote:  Another great distraction at that time???  Movies!  “Educational movies” are always a good distraction! “Magic Mike” for the win! Shhh! Don’t tell my mom I saw that movie!  

It was a fun weekend. But then Monday found me again, and it was back to more appointments. 

Neurologist:

I needed to consult with him about the tumor but also my heart palpitations and whether I might have other treatment options for my CMS (since albuterol seemed to be causing annoying palpitations).  I also needed to ask him whether he thought it was a good idea to have my stupid thymus/potential Thymoma removed and whether he could recommend a good surgeon. I don’t trust just anyone with a knife! 

People with Myasthenia Gravis sometimes have their thymus removed as part of treatment.  Surgery is not always successful in treating the symptoms, though.  In my case we’ve been operating under the assumption that I have CONGENITAL Myasthenic syndrome.  Not the autoimmune firm, Myasthenia Gravis. But there’s a strong family history of autoimmune disorders in my family. So we had to know for sure! Since there’s so little known about CMS, I was curious if taking out my thymus might help me, too? But my neurologist did not believe it would have any effect on my CMS. But since we never did any official genetic testing, we didn’t know for sure whether I had CMS, or could have MG…

FIRST we decided to do the genetic testing (DUH…knew that, but it was officially ordered and Athena Diagnostics was going to contact me in the next day or so to arrange someone to come to my house to draw my blood…gross!!!  I mean, cool!!!!)

SECOND, he ordered a 24-hour Holter Monitor to record my heart beats to see what kind of palpitations we were dealing with. The Cardiology Dept. downstairs didn’t have any monitors for me that day (patients don’t always return them when they are supposed to) so I was scheduled to return to pick one up the next week…

The genetic blood test for a full CMS panel takes about 6 weeks for results and then we would meet again and discuss what to do based on the results…

The results also needed to be sent to a specialist who is studying my disorder at the Mayo Clinic in Minnesota so he can help us find a plan of attack! Is there another medication or treatment plan besides albuterol? I was hoping there would be!

We decided it was ok to continue on my beloved albuterol pills as my neurologist was not totally convinced the cardiac issues were related to the albuterol pills until he saw the Holter monitor results. We needed to rule out possible cardiac causes, first. 

The problem is, hardly anyone takes albuterol in the pill form as often as I do and hardly anyone has taken it so often for as many years as I have…and certainly not for a neurological condition like mine (usually it’s prescribed for asthma) but, I’m super rare!  We keep establishing that! Ha!)

So… In summary…I was looking at MORE WAITING!!! 😩😝😂😂😂😂
But that’s ok. 

I was hoping, maybe in the end I wouldn’t  even need surgery and I’d just need a new treatment and everything will be ok! That was the best possible scenario 😉. 

At this point these were the possible scenarios I could think of: 

Worst case: I need surgery AND need a new medication or there is NO other treatment besides albuterol.

Middle ground I need either surgery OR new treatment! 

Or…I do nothing. I ignore everything. I go home and pretend life is grand, my thymus isn’t growing and my heart isn’t skipping beats! (Yep! That sounds like s winning combo…for someone who gambled with their life!)

No answers that day. BUT I really felt safe with the neurologist’s knowledge and approach versus my primary care physician who was flying by the seat of her pants and had never even heard of CMS before she met me a few weeks prior😕…  

My neurologist and I discussed at length how rare I am. It’s not easy being a medical anomaly! But my specialists love me😉. I make their day! I am interesting! Maybe I should join the CIRCUS!!!😜

Oh and when I shared with him, that none of the neurologists present or on-call wanted to see me that day I landed myself in the ER, My neurologist stated: “that’s probably because they’re afraid to.. They don’t know anything about your condition …”

Wow.😳 Hope I’m never actually dying and need emergency care! Cuz apparently nobody wants to touch me!😢

As always, there’s comedic relief…

Here’s my husband’s reply on Facebook in response to my mother-in-law asking for prayers for me:

Gotta love my husband.  His sense of humor is …well… You can see for yourself!  He makes me laugh all the time and reminds me not to take life TOO seriously!  You gotta find things to laugh about 😊❤️ 

Ok back to waiting and testing…

So, then I find out we were using the WRONG genetic lab!😢. The expert on CMS, who’s done years of testing and studies on CMS wanted me to use Prevention Genetics. Apparently, they have the best testing for CMS.  Soooooo….I try to contact my neurologist to change genetic labs… No response. Great. Standing still again!

Meanwhile, back at work where everything usually falls apart in my life…I find an Email from supervisor…

Subject: Leave

Ok! Shall I take that as a suggestion? Go ahead! Leave! You need a break. Leave work behind and come back later. No worries! 

 Ha! That’s a funny one. If you know my supervisor and boss you’d be laughing too…maybe crying…and probably cowering.

Crap. Here we go. The meeting wasn’t until 2:00pm!!! My adrenaline was pumping all morning and afternoon. Felt sicker the more the time ticked away and the closer the clock ticked towards 2:00pm.  

I didn’t do anything wrong. I had leave to use! (I remember those days fondly!  Now my leave balance has a negative sign next to it and I owe the Feds at least a year of my life in sick leave…but I digress. I will discuss that in later posts about my life after surgery)

I was now under the spotlight. I’ve been red-flagged for using too much leave. Even though I was careful to make appointments during my lunch time so I saved myself a half hour of leave each time…

I sat down in my supervisor’s office at 1:58pm. He had a folder. Paired carefully and arranged nicely with a stack of papers…highlighted were my remaining leave hours. Highlighted in another stapled packet was all the leave I’d been taking!

More papers… Leave policies. 

Reasonable Accommodations. 

EAP (the agency offered counseling program) Are you feeling stressed out about something??? Well, DUH!!!

My mind was racing.

Him: “So, I wanted to sit down with you and talk. See if anything was going on?Medically!?”
Me: “Um. Yes. Remember I gave you the copy of the MRI order? I have THAT going on. Plus, something else! I just don’t have answers for you. I don’t KNOW what’s wrong with me, yet!”  (Cue the freakin TEARS!!! Crap! Stupid dummy! You let him see you vulnerable and weak like this!?  

Ugh. I need Kleenex…I’m frantically scanning his office for Kleenex…No Kleenex. OMG! Who doesn’t have a box of Kleenex on their desk? Where do I soak my tears and snot??? I don’t even have any sleeves! 


I was a mess. 

So there I was, wiping gross, slimy snot and tears on the back of my bare hands. Keepin it classy! Yada yadda yadda… 

I’m eventually excused to go think about my life and what a mess it is.

I stop by my friend’s office to decompress afterwards and share what just happened. 

I begin my story… but she abruptly interrupts me…  “What happened!!! What’s THAT? There’s a BLACK THING on your face! Look! LOOK!!!” 

I turned to her mirror. Mascara. Damn it. I sat in that freaking seat in my supervisir’s office, staring back at him looking like a MESS. Like a blubbering idiot with mascara all over my face. Damn mascara. I loathe you.  

No, I loathe my inability to keep my cool and not control my waterworks when I get cornered! 
When I get stressed…when I get angry…the damn tears flow freely despite every effort I make! Lip biting, fingernail digging, deep breaths, calming phrases, calling myself an idiot for letting him see me that way! None of it worked. None of that ever works. 

So, there I was. Red nose and puffy eyes…and that damn streak of mascara across my face…my battle scar… War paint… No, it was proof I’m WEAK and always will be in these situations. No matter how big of a wall I build up. No matter how tough I act… I crumble when I’m in a confrontation. Damn it, Terra.


7/21/2015 still waiting fur new genetic test orders… I faxed new forms to my neurologist.

He didn’t get them.

Faxed again.

He finally called me after hours to say they are ready! I’ll try to go pick them up tomorrow…
Holter monitor is ready to be scheduled as well. I’ll call tomorrow.

Meanwhile…I was feeling BLAH about everything and just wanted it done and over with already!!!

7/22/15


Blood test day!!! Finally!!!

My neurologist’s receptionist couldn’t find my blood test paperwork😕. The medical assistant finally found it.

I make my way downstairs to billing/check-in and my patient specialist was confused.  Had no idea how to handje my paperwork fur the genetic test.  …on phone to billing as I check in for genetic testing:

“Got another miscellaneous one! Never seen THIS before…(completely garbled the name of what I’m being tested for and I have to correct her).  20 minutes later they decide not to charge me anything and tell me to go ahead and do the blood test. They’ll figure it out later and bill me.  Whatever. 

–Meanwhile, down at the blood lab:

I have over my paperwork…”Never saw THIS before! I need to find someone who can help me so we make sure we do this blood test right!”

Tic toc tic tic…Everyone else has been helped and I’m still sitting there…I think she was having trouble finding somebody who knows what we needed to do😳 (despite me handing her detailed instructions from Prevention Genetics that tells them what to do!😕)

Geez! I feel so…unique…and a little uneasy!  I gotta get back to work, people! Remember that leave meeting I just had???  Here’s another  two hours I’ll never get back again. 😳

The Supervising phlebotomist was very nice. Told me I looked nice today, as I sat nervously in the chair watching them unwrap the syringe and gather tiny glass tubes with different colored tops.  “Nice, Today?”  Have we met on other days when I didn’t look so nice?  I I got poked a few hundred times on both arms before they surprised the one remaining  vein that wasn’t hiding (my body knows when it smells a needle and my veins go MIA…makes for very unpleasant experiences getting blood draws and IVs).  Fill’er up!!!  The test tubes of red liquid genetic information were packed carefully into a special cooler to get ready to ship to the Midwest… Hope that doesn’t get lost!

I was wrapped in pretty gauze and yellow “tape” and sent on my way. I stopped to ask for a letter for work. To prove I was depleting my blood supply and sanity at the hospital and not depleting my bank account and having fun at the mall… He signed it. As I left, he wished me luck…seemed sincere… Thank you, I probably need it!!! 

At some point while I waited for genetic test results, I faced reality and started researching thoracic surgeons…. 
…Stay tuned for my next installment where I stop whining so much and work on finding a surgeon… 

Dear “Doogie Howser” thoracic surgeon and robotic thymectomy expert extraordinaire who looks 12 years old, MD,

Please, take my oversized, possibly cancerous thymus and leave my gorgeous chest intact! Thanks so much!

Love,

Terra

Thymoma part 3: Waiting…Anxiety keeps me busy and overstays its welcome

So here’s the situation…..

I was going Crazy.

As I frantically awaited MRI results and MyChart wouldn’t update fast enough for me…Timehop reminded me that 5 years earlier I was headed for an MRI for my liver (that’s a story in and of itself that started  with a kidney stone lodged in my ureter!😳)…And there I was, 5 years later,stumbling my way through abnormal CT scan and MRI results, again… (Thankfully, the liver thing was just hemangiomas. Harmless… unless they rupture😳. So, nobody punch me in the gut, ok? Lol).

However, this time it didn’t end at the MRI results!

My story continued…I needed more tests, more doctor appointments…more waiting (NOT) so patiently to find out what we have to do about the stupid suspected thymoma!  I did not like some of the proposed treatment options…

Radiation? Chemotherapy? Surgery? A combo of all three???  No!  Aaaaggghh!!!!

I should be used to this medical mystery stuff by now. At 40, I’m probably worth millions in medical bills! If I was a vehicle, I’d be a lemon😜. But, I’m a human! So, call me a medical anomaly instead! 😉  They’ll probably fight over me when I’m dead because there’s so many mysteries to be uncovered, scientists and doctors would have a glorious time analyzing my cells and organs!

Well…that’s a morbid thought. Moving along!!!

But really! You should grab a bowl of popcorn and sit with me at a new doctor’s appointment… It’s quite comical the way I share my medical history with someone who wasn’t privy to it before. It takes a while.

Once upon a time, there was a freak of nature who stumped her doctors time and time again!!!  She lived a life of great mystery and longed for answers…. But instead of answers she got lots of blank stares…doctors excuse themselves to go google what I just told them, and I hear a lot of comments like : “Wow! That’s rare!” sprinkled in along the way…

I make my doctors laugh… because, really!?!? You have to laugh! It’s therapeutic and makes you feel good!😊

I also definitely obsess and worry. More than a person should, I’m sure! I am a control freak. I don’t fare well “in limbo”… I want the answers, like… yesterday! I want to know what we need to do, how, and when we will start! I don’t like waiting for appointments and results…

I prefer to be strong.

I prefer to be in control.

I prefer to know the road I’m traveling and where it leads.

I sure as heck prefer to not admit when I need help with something! That means weakness.

So, as hard as it was for me to admit… My stress level and anxiety begged my friends and family for prayers. Prayers for patience as I traveled into unchartered territory! Hoping the road would lead right back to status quo! Yet, I fully expected a bumpy ride and some uncomfortable detours along the way…

I’ve endured a hell of a lot in my lifetime. Starting with stomach surgery at 6 weeks old for pyloric stenosis… And more surgeries over the years for various reasons. So, I had no doubt that I’d have the strength to weather this medical storm, too 😊💪

I also have faith that those wonderful sidekicks I am lucky enough to call my family and friends would keep me on track! ❤️💕💗  They did a beautiful job of talking me down when my anxieties built too high.

I seriously considered asking my doctor about a low dose of anxiety meds… Never considered it before! I actually hate taking meds.😢. But, I was feeling like I was in Fight or Flight mode all.frickin.day.long waiting for results…😳

In the end, the idea of yet another doctor appointment deterred me from ever asking.  I guess I prefer to feel crazy? I dunno… You’ll find me in the coucou’s nest in no time!

Usually my anxiety comes and goes depending on certain situations! And I’m used to dealing with that! I guess all my unknowns and worries are too much sometimes😝😁

All I have to say is thank God for my friends and family who kept me distracted and talked me down when the anxiety built too high…as I waited to find out whether I’d need surgery…which I eventually did. (More about that later!)

This was hard to watch…

Here’s excerpts from a family video of me on the beach at Lake Michigan when I was about 8 years old, maybe?  It was the early 80’s and we weren’t rich, so these do not have sound.  Lol Technically I videoed the video with my phone.  How’s that for a time warp? We’ve come a long way, baby! Lol

Let me preface this…I loved the beach.  I still do!  It is my happy place. I can sit and watch the waves roll in for hours. (Granted I’m covered in gallons of sunscreen, of course! Because I BURN!). I’m at peace there.

Walking in the sand!?  That’s a whole other story. It’s torture. It was complete torture when I was a child.  I wanted to be carried. I wanted to be magically transported to the water because walking in sand was like bearing 1000 pound weights on my body.  I could barely hold my own weight and would fall if the wind started to blow. I would get incredibly weak.

All I wanted to do was run through the waves, swim, build sand castkes, hunt fur seashells and lucky glass… But my body would simply shut down and I was like jelly.

I tried so hard to push through the weakness.  I’d do as much as I could to have fun. But after pushing through the the nausea, sweating, jelly arms and legs, I’d end up collapsing. I hung onto my dad, mom or sisters to help me get through the sand. They’d have to almost drag me. My full weight would bear on them and my feet and legs simply went through the motions.

It was misery.

As I watched these videos, it all came flooding back.  I started crying.

It was soooo hard feeling so helpless and like my body just gave up on me all the time!  And how it would always ruin my fun plans…like a beautiful vacation day at the beach.

I remember this day very well.  Something funny happened at that beach.  It’s a favorite family memory we all share. (I’m not including the funny moment because I’m trying not to show my sisters’ faces on these videos. sorry)  And we got it on video!  Which is really why I wanted to watch it.  But then it really hit me how “weird” I looked walking and trying to stay upright. The feelings all flooded back.

You’ll see in first second of the 1st video, I start to go down but catch myself because I was hanging onto my dad.  The small waves were enough to almost knock me over. In the second video, I try to walk faster and you can really see my wobbly abnormal gait! Makes me think of those windsock characters  you see outside a business, bending and flailing in the wind (those things freak me out worse than clowns…but, I digress.) Mostly you see me walking/waddling unsteady… It took every ounce of energy to take each of those steps.  Begging and pleading with myself not to collapse. I wanted so badly to be a part of my sisters’ fun. Yet, mostly I had to stand there…or hold onto someone.

I also remember this day because I remember my parents trying to TEACH me how to run when we were at that beach. They didn’t realize I simply didn’t have the muscle strength to do it. It wasn’t that I was awkward or uncoordinated… I simply had no strength.
I remember trying really hard for them. With no results. I wanted so badly to run!  How glorious that would’ve been if it were simply something I needed to learn!  But it wasnt. And I felt horrible. I felt I was letting them down, and I was so frustrated that my body would not let me do what I was telling it to! If that was on video, you would’ve seen how significantly I was affected. I think these videos don’t do it justice. But they’re all that I have!


Video 1: first few seconds show me almost falling just because of a small wave. I was hanging onto my dad for dear life. Then you see me waddling back.

Video 2: waddling…I even try to speed up and you really see my abnormal gait! Each step was calculated and I begged with myself not to fall… Just one more step…one more step…one more step…
video 3: just more waddling…and hanging onto my dad so I wouldn’t fall.

just because I want to end on a positive note 😊