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