I’m still here!

It’s me, I’m still here! Just a little after three months and I’ve finally caught my breath. Sorry for the absence.

There’s been so much going on and I can do is sit back and look at what God’s doing. How His hands are in every single detail, every single moment.

For example, my favorite (medical) thing going on, Madie, the best roommate you could imagine, worked at a neurologists office and brought up Von Hippel Lindau to her doctor which led me to the best doctor I could see down in FL. Not only is Dr. Nick knowledgable but he can keep up with my sarcasm and smart remarks. Possibly my favorite part. BUT Dr. Nick was trained at MUSC, my old hospital in Charleston, SC. And by my favorite doctor and neurosurgeon up there! Holy small world. But I’m living for it. The hematologist and general specialists are great too. And not knife happy *inserts all the praise hands* Even better news, all the tumors in my spine have stayed consistent in size, same with all things in my abdomen and now just waiting on lung results but it looks like it will be another year of no surgeries!! **insert even more praise hands**

I’ve started building my clientele more at work with some of the sweetest clients and I actually somewhat enjoy going in *lol finally* — but really I work with some of the sweetest people I’ve ever met. And no more working Sunday’s, so I finally get a day with T!

We just went to celebrate TJ’s cousin’s beautiful wedding and it resulted in a weekend where we finally got to spend time together like before the move again. I got to spend time at home, go to our home church and oh boy, Kepner had the time of her life with having a yard again. — You know those messages when you go to church and they hit you right in the heart? That was this past Sunday. THEN yesterday, listening to the Viall Files, with Demi Burnett from this past season of the bachelor, (MY GIRLLL), she spoke on how she wishes she was more aware of how she responds to drama and conflict, instead of saying something that could potentially hurt someone, she has realized that she wants to speak more kind and uplifting words or not respond at all. (goals) She mentioned watching the season back and how her mean words literally made her cringe, how’s that for self realization? Which is the just of the message last Sunday, that when we respond in a rude way or negatively, it is a heart problem and we need to acknowledge and work towards uplifting and positive responses to honor Him in all of our actions. Back to the point, how ironic?

It’s God and His gentle reminders. Even in the most random times and ways.

 

Hopefully, talk soon 😉 — here’s some of the best pictures from the past few weeks:

 

 

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fighting the rare fight

Try fighting something other people don’t see. This fight that you and your body just go at everyday, every hour, every minute, every second. That made your mom’s body too tired to fight and took her from you at a young age. That roughly 1 in 36,000 people are affected by, so theres no easy to find *single* specialist to help fight this. I honestly cannot tell you the amount of different specialists, nurses, support staff and so forth I see in a calender year just to cope with the constant battle. These people –who do the damn thing, let me tell you– that constantly fight with me and are learning alongside of me as we piece new results together like a puzzle. And theres these professors that tell students in medical school that they should know what Von Hippel Lindau is but chances are, they won’t see any cases so not to lose to much time on it (I was furious when I was told this by a third year resident). So why would a student want to specialize in or research it specifically after being told this?

There are three clinical care centers (four if you want off of the coast) in the coastal southeastern region of the US. (But a new international care center in Israel recently got recognized, whoop whoop!!) Most of which that are not in teaching hospitals, which is important to me in the instance of that third year resident being able to learn and educate others on VHL. Add the stress of moving to the stress of finding a new team of doctors in a new state while you’ve been at the same hospital since being diagnosed and it amplifies the whole situation. And oh boy, if you have to go through the referral and record gathering, I pray you have more patience than I do. Thankfully, in this instance, for technology to be able to connect with the rare few also coping with Von Hippel Lindau. The VHL alliance has created groups and resources to connect warriors fighting this same fight and I am eternally grateful. Grey’s Anatomy also mentions Von Hippel Lindau and thank you, Shonda Rhimes for making me feel that bit of fame. If you haven’t watched, you’ll love Denny, its brought up in season 7 episode 10 and season 8 episode 10.

     With that being said, what about this pain that wasn’t there yesterday, a new numbness and is this headache actually a brain tumor? Or am I just behind on how much caffiene I’ve usually had by now? When do I know if I need to alert my doctor? Or which doctor do I tell about this symptom? Back to the referrals, which doctor do I contact and do I contact each and every specialist? There’s no easy solution. The next surgery may leave more than just one side of my body numb and lead to more physical therapy. How do you decide on which treatment path to take? Bless the doctors with the patience to reteach someone how to walk. Bless all the doctors with the amounts of patience most seem to have.

     Though the lovely tumors, surgeries and constant MRI’s are not the most fun, it is hardest to not let a diagnosis like VHL define my way to live. I will speak on it in hopes of getting word out about this rare condition. In even more hopes to prevent others from losing their loved ones from the scary rare things. Thank a specialist next time you see one, they’re the ones that hold most Von Hippel Lindau patients lives in their files and smart, thoughtful hands.

 

http://vhl-uk-ireland.blogspot.com/2016/02/3-hit-tv-shows-that-feature-vhl-von.html– linking this for myself, there’s an episode of house I have yet to see 😉 — after finding this link, the episode of House is well worth the watch too.