Finally made it to Johns Hopkins!

Let me just tell ya. Trying to get from Hawaii to Maryland was a feat. My flights were being canceled and rearranged before I even left. I decided to go ahead and fly into LAX knowing I’d have a 4 hour layover. To my surprise when our flight landed the next leg of the flight was still on. LAX to BWI. Well, right on good news. I get some coffee, get my book out waiting to pass the time. I look up and a herd of people are freaking out. I finally found out they had canceled most all flights into the east coast. I was offered a flight into Newark, NJ but we didn’t know what would happen after that. The lady at the counter said “I can get you on, but after that you’re on your own.” I just took a leap of faith and said OK put me on the flight. The landing was a big- terrifying. All the snow and ice on the ground, sliding and skipping around. Well we landed safe. Now I had to figure out how to get into Baltimore. Wow- wow would be the only word to describe Newark airport. All flights were canceled, there was barely room to stand, sit anything. I took it upon my self to ask around to some of the travelers (because the employees were less than friendly) so they got me in the right direction of the train. Everyone kept saying the train was closed but when I tried to buy tickets through my phone it worked. Hmm this must be a glitch.. To my surprise I was able to get on the train into Baltimore. 2 hours. So now I had been traveling for around 18 hours. From BWI it was so so snowy and this Hawaiian girl isn’t used to that. I took a cab to my hotel (that was pretty scary). I have met so many people alone the way, everyone at the airport, on the train and here at my hotel. I love knowing people from all over can get together, talk, drink and have a wonderful time.

So let me get to the Johns Hopkins part. I went on Friday. I was shuttled from my hotel to the area I needed to go. I was there from 11-6 but I got to meet almost all of the doctors-surgeons on their team. They felt for 100% sure that these tumors are not schwannomas. They are all plexiform all internal. The fact I don’t have the first lump on my skin it throws people off. Anyway, their doctors are wonderful. Smart, sweet, funny and they really care. They are very conservative with surgery, which I love. I have 3 more appts: 1 full body scan, an appointment with the neurosurgeon, and plastic surgeon. So far things are going really great. And Baltimore is such a cute city.

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Late Late updates

Hello everyone and happy (late) New Year. I appreciate some of you asking if I’m still alive. Well good news!! I am. 🙂 things have been going ok. My doctor changed my pain medication and I’ve felt better luckily. Right now I am visiting my hometown with my daughter. She just had her 7th birthday! It feels like yesterday she was born. I go back home to Hawaii in a few days and before I know it I will. A heading to Maryland for my appts at Johns Hopkins. I will be there for about a week and we will be talking surgery options as well as other options. I am excited to go but if I’m cold here in Georgia I’m going to be really cold in Maryland! I hope everyone has had a great start to the new year!!

Bad luck Betty

For once I think I’m almost finished Christmas shopping. I only have one child to shop for, and this year we aren’t doing any gift exchanging. I honestly don’t want anything, and my daughter isn’t a huge fan of playing with her toys unless she has a friend over so we aren’t going Christmas crazy around here. The one thing my daughter asked Santa for in a heart breaking note: I wish you could bring my Grammy back to life. Santa, please make my wish come true
That just makes my heart drop to the floor. We lost my mom unexpectedly 6 months ago, and they were very close. If I could make that wish come true for her, I would do anything. Seeing your 6 year olds heart break is the most defeating thing in the world. Especially when you can’t fix it. For Christmas I plan to get her a locket with a photo of her and her Grammy. Before my mom passed I didn’t view having Neurofibromatosis a huge deal. I hate it, but it didn’t scare or worry me. Surgeries didn’t scare or worry me either. Knowing how my sweet girl reacted to losing her Grammy, now surgeries do scare me. I don’t want her to ever experience that in her child hood. Maybe I’m over thinking things but it does concern me. I got some not so favorable test results. I have a large tumor located in my groin and my leg has been going numb, giving out and very weak. An EMG was performed. That tests to see if the nerve is working correctly. The main nerve, femoral nerve that moves the leg at the hip, and the kicking motion are both not responding. This means that the nerve is still alive, but very soon I could lose function of those movements. All of my medical records were sent to Johns Hopkins and I was just informed this morning that they have received them all and their team would go over them and then give me my appointment by this week. I am excited and nervous all at the same time. Hopefully going there will be the start of a great new year.

Whoop whoop!

I’ve been waiting for about 5 weeks for Johns Hopkins to call so we could schedule my appointment to meet their team and take my trip out there. Someone on one of the Neurofibromatosis Facebooks was so kind as to give me the nurses email who I was waiting to call. Within 10 mins of emailing her she had responded and told me to go ahead and send my medical records, which were already packaged, notated and screaming “send me! send me!” Today I see a number from Maryland calling and YAY it was Johns Hopkins. She said soon as they review everything she can make my appointment and know how long I need to stay. I am so excited to go. Just thinking of how I will be seeing some of the best doctors in the world who get it makes me so happy.

Gobble til ya wobble

Well the Thanksgiving cooking fest is slowly approaching. (Don’t tell Santa I said this…) But… Thanksgiving is my favorite. I love all the delicious food and being with friends. I haven’t spend a Thanksgiving with my family in 4 years since we are living on a rock in the middle of the Pacific Ocean precisely 4,580 miles away. Hmfp. It might be a good thing I’m away this season selfishly. My Mother just passed away a few months ago, 5 to be exact, so things back home will be a sad one and I don’t think I have the strength to be around multiple people who are sad right now. Also, coping this far away makes things much less real.
Well, back to some not so sad topics, being a military spouse you learn quickly that friends ARE family. We’ve always done thanksgiving dinner at our place and invited our closest friends. This year I’m only hosting about 6 since I’ve been feeling so lousy lately. I already spend 2 days cooking. I bring my southern girl roots back to Hawaii with an all out Georgian feast. In excited just to be with good friends and laugh (maybe have a few glasses of wine) and forget about any struggles. And our tradition to kick off the holiday season :drumroll please:

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We watch this every Thanksgiving afternoon, when we are all lazy and sluggish from the all day eating. I’ve decided this year to buy my daughter a little Christmas kick off box with some new Christmas pajamas, a few packets of hot chocolate and maybe some slippers. Do any of you have holiday traditions?

Frustrated!

Feeling really frustrated. I can feel my body slowly getting worse. The pain is at an all time high and I’m on an island where the doctors are at a loss as to what to do next. My primary care doctor has followed me basically to keep my meds refilled and to refer me to MRI every few months. On top of the body pain my headaches have been a constant, DAILY. I tell my doctor the pain is interfering with my life, I’ve been in bed more this month than I’ve been out. His solution – the pain meds are causing the headaches so we shouldn’t increase the dose even though you are in severe pain (even though he lowered the dose a few months ago because he was afraid of how it “looks” since I’m on 5 different medications) Also the tumor in my groin even though unchanged is causing major muscle weakness. His answer: well the MRI shows it hasn’t grown so it’s fine. And I have been referred from Hawaii all the way to Maryland to go to Johns Hopkins and I have been waiting on an appt for weeks.. Finally call them and she tells me they are backed up and I can’t be seen until March 2014. At that point I broke down. I feel like I will never get help, never get relief and I will slowly start feeling so bad physically that I’ll always be feeling like crap. Anyway.. That’s my pitty party for the day.

Happy Happy Joy Joy

Hello Everyone! I am so glad its almost Friday! I have been meaning to write (really, I have) for the past few weeks. I have been feeling pretty lousy with lots of pain, so the energy I have was to do my duties of a momma and wife. Now that I’m feeling better let me catch you all up. I’ll start by wishing everyone a late Happy Halloween! We have a big Halloween party every year because that is my favorite holiday of all time. I think got that from my Mom. She always dressed us in the coolest DIY costumes ever. What types of costumes did you and your family wear? For our adult party I was a scary zipperface lady, and for trick ‘or’ treating I dressed up in my mothers old vintage Liberty overhauls, some cowgirl boots, drew freckles on my face, pulled my hair into pig tails, and the finishing touch was black tooth wax making it look like I was missing a few teeth. It gave everyone a good laugh, those who weren’t pretending they didn’t know me. Well in between all of that I have been back and forth to doctors appointments and between my neurosurgeon, and a orthopedic surgeon telling me they didn’t feel comfortable doing surgeries on these kinds of tumors (neurofibromas, schwannomas). So here is when the good news comes in….. ARE YOU READY? My doctors finally are pushing to have me send to Johns Hopkins Neurofibromatosis Clinic. My referral went through so right now I’m just waiting to hear back from Johns Hopkins to make my appointment. The only lousy thing is I have to fly from Hawaii… ALL the way to Maryland. That is about a 13 plus hour flight, and that’s IF I fly non stop. Either way, its completely worth it and I am very excited. I finally get to find out some real, true and educated information about my health. Things have been hard for me recently with the extra pain, headaches, and just everything that comes along with this disorder. I will keep everyone updated. Thank you so much to the people who have “liked” and commented on my blogs. I hope you guys have great weekends and that things are going well for you all.