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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mourning in solitude

It’s hard enough to lose someone and/or someone(s) dear to you. But for things you thought you had already processed to resurface when you’re still trying to adjust to a new state and life, doesn’t make it any easier to adapt.

The passing of George H. W. Bush has stirred up emotions I have been burying for months, even years now. I know, how silly, a man I did not personally know, passing has me an emotional wreck. Did you see the picture of his service dog saying his final goodbyes? My heart can’t take it. The article I’ve linked even shows picture of the bond they shared, all. the. tears. Not to mention George W. Bush’s speech. Incredible. Full of class and holds so much integrity and honor.

This year hasn’t been easy on mine nor my boyfriend’s sweet families. My great grandmother, who was the glue that held our family together, passed early in the year. But for TJ’s family, they lost three loved ones all one after another all in the same time frame. February also marked thirteen years that my mom has been gone. You can just feel the emotional tension in it all. Thankfully, the latter half of the year has been a little easier on us. But it doesn’t take the sting away.

Thirteen years, ten months. They hurt the same. No way does it get any easier. Time may help the initial hurt go down but there’s no way I will never not try to reach out to my mother, want to sit on a bed and talk for hours about any and every single thing, with coffee in hand. I imagine that who I got my caffeine habit from. To not want one more day in my Mamaw’s living room hearing her talk about how good her God is and walking down to the sands hearing the stories of what brought her to where she was that day, with every single Kentucky detail. Oh, if I could have just one more pan of her peach fluff.

But for now, I’ll wear my mom’s old SCAD crewneck sweatshirt, wondering who all she saw, where all she walked and what perfume she would’ve sprayed each day she wore it. I’ll read the one of my Mamaw’s bibles that I have, imagining how hard she’s partying with Jesus, trying to decipher why she underlined what verse ,what she must have been going through when she did and how hard she’s hugging my Uncle Charles’ and my momma’s necks.

And I’ll do it alone. This is no cry for sympathy either. I know I’ve got my people and my support system, regardless of location. There are plenty of people around here too, but it is not the same as laying in the room where your mom stayed for years, walking the waterfront where you grew up, imagining who she ran around with and playing the few scenes you do have over and over in your head. No complaints about being in my new home, but there’s so much comfort in home. Thankfully I will carry the times from my South Carolina home and bring them here. Through my person (yes, grey’s reference), through becomingly familiar places and my 44-pound fur baby that always knows.

When you find comfort in familiarity it’s hard, even six months in. I will cling to bibles, sweatshirts, coffee mugs and other inanimate objects. I will cling to familiar coffee shops and drives. Mourning is different for everyone and I hope if you are doing it alone, in a different place than you know, you find your comfort. Find your people, face your loss and celebrate your strength.

 

 

——–if you text “Home” to 741741 when you are feeling depressed or sad, or going through any kind of emotional crisis, a crisis worker will text you back immediately and continue to text with you? Many people, especially younger ones, prefer text to talking on the phone. It’s a free service to anyone–teens, adults, etc.–who lives in the US.

Depression is real, you are not alone.

 

How incredible is it that people are doing this? ^^^

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.