Trip to Atlanta

 Guest blogger... This is mom writing of their trip to Atlanta.

We were to have bad weather on Tuesday so we planned to leave way early to avoid, or allow for, bad roads. Things didn't come together like we expected and we left the house 30-40 minutes after we planned. After a little detour, I remembered the wheelchair. We had forgotten to pick it up, so back to the house we went. Finally on the road about 40-50 minutes after we planned.

On the way down 501 toward Wapak Lynnelle was trying to figure out how to get her one last Coumadin blood check before her surgery the next morning. This doctor could not order it, that doctor would not order it--what a zoo. Then she had a brilliant idea-- have Dr. Sullivan (the Atlanta doc) order it and we would stop at Cridersville Medical Center and have Missy draw her blood. It was a fantastic solution and worked out perfectly. 

We had good roads with only a little spitting rain and arrived at Dayton airport in good time. All the handicap spots were taken so we had to park out a bit. I unloaded the wheelchair and the suitcases and was getting other stuff out when a shuttle stopped and asked if we needed help. What a God-send! He loaded the suitcases and put Lynnelle on a lift so she didn't have to climb the steps, drove us to the door and unloaded us. It was so nice! 

Melissa had preregistered us so check-in was a cinch. Getting through security was a breeze too. It can be, has has been already, a huge hassle but this time it was easy. We had lots of time so we sat down close to some stores and eating places and relaxed a bit. Eventually we mosied down the fantastically long hallway to our gate, which, if you take Air Tran as we do, is as far as you can go, literally.

Lynnelle was hoping for a row of seats without arms so she could lay down but I told her they put arms on them for that express reason--to keep people from laying down. The place we usually sit was taken so we looked around for another spot. I found one sort of out of the way and what do you know, there were three seats with no arms! She spread out, and while it was no five-star bed, she could lay out. She rested and I read a book. 

When we registered the best seats we could find were in row 20. That is really far for her to have to stagger/wobble, so I went to the desk and asked the lady if there was something closer to the front for us. She said she'd see what she could find. After a while here she came with new boarding passes for us in row 3. 

As we boarded, we suddenly realized that she had given us FIRST CLASS seats! Whee! How special! The seats were wider, more comfy, we got drinks right away, more drinks later, special snacks, etc. It as a very special treat. The flight was good, as usual.

Jason Slabach was there to meet us in Atlanta. He drove us to his apartment and we spent the night with him and Katie. They took us to the Atlanta Access Center bright and early the next morning before they started their day. Oh yes, Katie works 3-11 so Jason fed us supper of homemade Tomato Basil soup and fried cheese sandwiches made with homemade bread. It was really good. They are quite the cooks!

The Atlanta Access Center is a small place, comfortable and professional. Everyone was so nice and kind. We were taken back to an open area where I proceeded to spend hours, just sitting there in a chair. This area was open to two other stations for patients, (although there were none there), the nurse's station and three patient stations on the other side of the nurse's station (there was one man over there). Since we had come straight from Jason's, we had all our luggage. They allowed me to put it in an area that can house patients but they weren't using it so I had a place to put the stuff out of the way. I dug in both suitcases by times and there was a bed in that area so I had a nice place to put the suitcases for digging. :) 

Eventually, after much prep, Lynnelle was wheeled off for surgery. I was sleepy so I backed my chair up close to the wall and leaned my head back and went to sleep. All of a sudden I woke up with one of the nurses in front of me and another one on the other side of Lynnelle's bed. They were going to get me more comfortable! They brought me a recliner and took my straight chair away, and the next thing I knew the lady nurse was covering me with a warmed blanket. That was so nice. I went right back to sleep, waking up only when Lynnelle came back. Then she had to lay flat for 3-4 hours so I went right back to sleep again. She said I was OUT. Good thing I didn't snore and embarrass her. :)

Time moved on and it was time to leave. The Center called a cab for us and we were on our way to the motel where we have been ever since. 

Yesterday Lynnelle's Lymie friend Andrea Wagler from SC and her mom and baby brother came to see us. They had to drive 3.5-4 hours one way to get here. They stayed 2.5-3 hours, then left to do some shopping at Sam's  Club on the way home. We had never met these people before but they felt like they knew us from email and facebook. They are very nice folks. Oh yes, they brought us baked potatoes from Wendys for lunch. That was nice. 

After the Waglers left we crashed and slept a while. I read a bunch. We ordered in pizza for supper. I am convinced that order-in food is bleck and blah. Nothing tastes very good. 

Lynnelle has been resting all morning. She did talk to a friend or two on the phone. I went down to the Business Center and registered for our flight tomorrow. We have to be at the airport by 8 something so I will try to have us pretty much all packed up tonight. 

It has been a good trip so far although I cannot see any improvement in Lynnelle. She has not said if she feels differently. Keep praying for her healing! 

                                               *Update from Later*

We needed to catch the 8am shuttle from the motel to the airport. We went huffing and puffing (at least I was) to the front doors--yay! the shuttle was still there. I turned in our keys and pushed Lynnelle/drug the suitcases out the door. Lynnelle said "the driver isn't even out here" but I soldiered on, figuring till we got in he would come. As we got to the shuttle here he came out from around the driver's side so he was there after all. We piled in, along with one lone other person. 

Check in was a breeze again, only this time I had a pretty full can of Static Guard that they swiped. :( Didn't realize it was in the carry-on. 

We managed to ride the train to our concourse which was a full four concourses away, and they are huge. We are talking Atlanta airport here. Our gate was D2 so I figured we'd be close to the begining. Huh, was I ever WRONG. D2 was AS FAR as you can go without falling out the end of the building. And there were 16 gates! So I got my exercise there.

 The Command Hook Minnie gave her as she was walking out the door. You never know when you will need to hang and drip an IV. Command hooks work so good, easy on, easy off!

We found a place to settle in and Lynnelle proceded to fix up the IV she had to run while I went to see if the gal at the desk could move us up from Row 18. She told me the plane was completely full--nowhere to move us to. "But wait," she muttered, "I could do this . . . " and she proceeded to move us to first class again! :) This time we were in the first seat, which meant we could not keep our purses with us during take-off and landing, but she got them for us when we asked for them.

So this trip was memorable in that we had first class both ways! 

**Update on Lynnelle**

 She said she feels more steady on her feet and Minnie could see that she walked a bit better. She just looks a bit more steady. I pray improvements continue to show!

YAY!

 She was out of surgery by !0:20 or so, but still in recovery so mom hadn't seen her yet. The Dr. said she was doing fine. The right side was about 60% blocked and the left side was about 50% blocked.

This picture was taken right after surgery, all had gone well and she was happy about that. She said she was able to stay awake for it. That is always somethings she likes too. :)

White as a sheet describes this picture. Her cheeks have a touch of color but over all she's white. 

 She has to lie flat on her back for 4 hrs after surgery. Her back is paining her alot. Its not the surgery that had put her in so much pain, its the fact that she hasn't been able to take many meds today. So you could say its a "normal" daily pain that's uncontrolled right now.

They've just left the hospital as i write this. Now back to the hotel to recover for a couple of days. On Friday she starts heavy IV's to go in and kill all of the infection they broke loose today. 

 Thanks for all of the prayers leading up to today and continuing on in the future. I don't know about mom and Nellie, but i have been filled with peace all day, even before i knew the out come. 

CCSVI

 Today is the big day! One we've been  waiting for for a while. Nellie and Mom were to be to the hospital by 7:30am and Nellie just said she is going back. So i'm guessing a 9:30-10 surgery planned.

 Prayers needed for everyone involved. This is a risky surgery, so we all need strength and trust in HIM. He is in control, and will take care of us, no matter what happens.

News...

 This poor blog has been neglected for multiple reasons. Not much has been new or different in the line of treatment. However i do know that people like to keep up with this journey. Something that seems mundane to me, probably will interest others.

 The newest thing in treatment is going to Atlanta for a CCSVI procedure. What that consists of is unblocking the jugulars and arteries in her neck. Mom and Lynnelle will fly down February 26, procedure on the 27th, and fly home March 2. This is a risky procedure, but we are hopefully. I talked to her nurse today and she told me she was "cautiously hopeful." ;)

Lynnelle is really sick right now with nausea, double vision, and extra pain. You can pray for her to get some relief, and pray for Minnie to be able to keep up with all of her duties.

We'll keep you updated on the progress of the CCSVI. :)

For those wanting to donate through the site, we will work to get that back up and coming, we just wanted you to know that we do loose 3% of all funds done through the site.   You can also mail donations to   

St. Thomas Christian Fellowship 

8640 Fort McCord Rd  

Chambersburg, Pa   

  17202

Big trip coming up...

I'm so sorry I didn't get a blog post written within the last 2 weeks. Things have been so busy and stressful.

 Tomorrow around noon, we leave for the airport for another Dr. Jemsek visit. You can pray for me and Nellie. She's been really sick lately and decided tonight that she is "just going to forget this trip was ever planned." :) 'She's staying home'. Not really, but this looks big. I am running low on sleep from all that's been going on, so i need strength, stamina, and kindness.

 From DC on Tuesday, we're going back to our grandparents in VA and will be there for a week celebrating Thanksgiving.

 Overall I would say Nellie is a bit better. I think its best described as 2 steps forward, and only 1 back. She is still very sick, but different things show up that say she's improved a bit. She has more of a sense of humor, her skin rash has cleared up some, her walking is better some days, and shes more alert sometimes. All pretty small when looking at the big picture, but I am looking for all improvement i can find! :)

 I will try to check back in after this weeks appointment and let you all know what is going on, what the Dr. has to say, and how the trip went.

Updates...

"We're sorry, but this part of the site is still in construction  Continue to check back. We hope to have it finished this week."

 In the mean time, November is National Family Caregivers Month. How shall we 'celebrate'? Or relax? I never had ANY clue how much work it was to take care of a sick person before i started doing it. And now i wonder how some do it for years on end. Well i've been at it for 2 years, but many more years some have done it.

Guest Post...

I've been trying to get a post written to update you all on treatment and how the last round went, how my appt was, and what we are doing differently. But I just haven't had the energy or brain power to do any of it. I've tried recording and re-recording videos instead of writing. I've tried. I know you all can't see that though, I understand.

But there is SO much you can't see. Right now that is the tears streaming down my face. Or the 20+ medications I take to get through a day. And my phone blowing up with ooh's and ahh's over this-

Now I guess here is where I need to understand that once again, you don't see the unfinished blog posts, the tears, you don't see the meds, or Doctors, or ER/hospital visits, and on and on. 

But I'm in this bad place. 

Every compliment I get on this photo, i take as one more person saying "you aren't sick, you look fine!".  

Now don't get me wrong, I love each of you and appreciate your support, but I am writing out my true feelings and how this all is interpreted. 

I've gotten this all my life, ever since I can remember I've been told that whatever my problem was, I was fine, I was being a hypochondriac, that I looked OK. And that's just it. Its just looks. 

What else can you not see in this picture? 

How sick I was that day and nearly cancelled on the photographer, but knew it was my only chance. The migraine....smiling in the light of out-doors with a migraine, this was a huge order for me. Then me hardly able to get back into my house and back into bed....I was in so much pain, and nauseous. Twitching and jerking. Vomiting and all sorts ensued.

And the other thing you can't see, which anyone would have had a good laugh at though, was my mom and the photographer pulling me to the back yard in my wheelchair. The ground was soft and I'm not lite, so it took them both to pull me out there....It was a little embarrassing... 

When I look at that picture....I don't see me.

Because that isn't truly me right now. 

The real me?

 That smile felt completely fake. Most of them were, because when I was genuinely smiling, I looked dead. So I kept having to put this big, bright face on. Force my eyes open.

My eyes...I assure you, the wonders of photography programs are great, because mine aren't that bright naturally and the skin....haha...now I did actually asked the photographer, "can you make my skin look OK"? 

I told my sister just this morning that my face looks like I was murdered. My skin is bad.

The real me right now? 

 I'm in bed all the time. Can still hardly walk. I'm light, sound, smell, and touch sensitive. Muscles twitching and spasming. Seizures, narcolepsy, insomnia, and anxiety. 

These are just a few of the symptoms that make this world of mine, that I wouldn't wish on anybody, go around. 

UPDATE ON ME AND TREATMENT

I am in D.C. every 6 weeks and I was just there 2 weeks ago. I had a test done at 9am and it lasted 2 hours. Afterwards Joel, Gwen, and Lila picked us up at the curb and we went to have the Georgetown cupcakes experience- they have a GF one by the way! 

Next was finding the Apple store for Joel to look for something....it was a little interesting, as it is hard to use GPS in DC! And then we had to find a place to park! The ladies stayed in the car and just waited. 

And then food. Ha! It was one of those GPS deals. AGAIN. We would find a place that sounded really good, drive to it and realize that it was in the middle of some mall or business. So we finally gave up and were going to go into the mall...we had time. Here you had to have a monthly pass to park in the garage! 

It was an interesting hour+, trying to find some place. We eventually did, and it was the block behind my LLMD's office. Go figure! 

And then my appt was at 2:30. The nurse said that my provider seemed quite concerned by my symptoms, which I had emailed the day before, and that she would be right with us. Well, we waited a LONG time until she got to us. Asked a few questions and she and Dr. J came up with a plan of treatment, dosing changes and treatment for the next 6 weeks. 

I traded out Clindamycin for Cipro, which certainly didn't hurt my feelings! Clinda leaves a bad taste in your mouth for about 10 hours! 

We were in the office until about 6:30....far past their closing time! As soon as we were checking out, the nurses and providers were heading out the "back door". In reality, it leads to the same hallway that we use, that is how we saw them. Haha 

And then back to Baltimore we went. Thankfully the traffic wasn't bad, because we all know that I am a basket case in the car. Especially in DC!! Since we got in so late, Joel's just dropped us off and were on their way home. They have about 2 hours. And mom and I crashed into bed! 

We had left that morning at 6:30 so that we could shuttle to the commute train station, catch the Marc, and its about an hour down to D.C. From the station we catch a cab to get to Dr. J's office. And we were a little early for the 9am appt, but I say a little early is right on time! I used to work in a Dr's office and understand! 

We made it home and last week and this week I've been doing my treatments. They are pretty brutal, but I have hopes that they will really come to the rescue and help me get into remission! 

I think I can already tell a difference in my walking, but others can't see it. At least I'm not scooting around the house as much, but that might change if my knees and ankles continue to be so weak. 

Also depends on how sick I am. Yesterday, I shouldn't have been on my feet! I was moving so slowly, I could have been going backwards. I guess that is something that pain will do to you. And neuro issues.

Other than what I've already touched on, I'm not sure what else to update you on... 

I'm getting kind of sad and depressed though. I feel as if life, the world, and my friends have left me behind for bigger, greater, and better, more fun things. I realize I'm not fun right now. But I still need friends! I just feel like I have been forgotten.

And just to clarify, this post has been written over the course of several days...Its just so hard to get your thoughts all put together and know what to say, how to say it and to simply be real and say it. 

I appreciate all the love and support I have been given! I couldn't do it without you!! 

And Especially to my family who have done fundraisers to raise money for my treatment! Its just amazing that there is so much love out there for me!! 

I want to say Thank You to my Hilty Aunties for the fundraiser you did in my honor! I really appreciate it and want you to know that I love each and everyone of you and that I hope to see you all at Thanksgiving and thank you personally!! 

Also to my second cousins in the Hilty family- they are more like first cousins since we know them so well!! :)  Thank You for all your hard work and your love and thoughtfulness!!! I am blessed and humbled by all you have done for me!! 

This is such a humbling experience! Needing people to help you daily. Needing help to even get treatment. Needing friends even when I can't give a ton back to them. But I know that there is a plan and a purpose for each moment. May God Bless you in your giving, your generosity, and your hard work toward my cause!! 

<3 Lynnelle