Beyond Comprehension

I'm sorry about any posts that have hurt those around me.
This is a very emotional time for me.
Lonely.
Sad.
Weary.
And exhausted.

I will update soon about my treatment for the the week after next....thankfully I have another week off!!
Love you all, and I hope to hear from all of you!!
Yes, you!

xoxoxo
Lynnelle

In a bad place...

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 

Some Clarity

So most you have probably heard that I did get approved for disability. And have assumed that I no longer need financial help, that the disability would pay for my bills. This is so NOT true!! Disability will only a drop in the bucket! Like a friend of mine said, "This disease would drain a million dry". And its pretty much true! Besides, I haven't gotten a dime; I've only been approved. When I hear people say "I don't work, I'm on disability," I wonder how they are living because disability doesn't pay enough to live on, to say nothing of the medical bills.

My Dr. in D.C. doesn't take any form of assistance, insurance, etc. We have tickets there and back, hotels, and food. And besides all the D.C. stuff, I have my doctors here. 

I just had 2 ER visits and spent 4 days and nights in the hospital, doing every test they could.... ruling out Congestive Heart Failure. Thankfully I passed all the tests, and with a few med changes I am doing better. 

I am still very sick and desperately need help! I still need intensive treatment and at this point its been costing about $7,000-$10,000 per month. Its just so far beyond our abilities. But we are hopeful that God will provide! We have faith that He will! 

Thank you for understanding, and thanks to all who have so generously helped me get treatment. I really do appreciate it!

Here is just a brief update on what is going on with treatment, what I am taking, and how it is going.

I'm sorry if you can't hear it very well. I can't speak very loudly and I would have to get super close to the camera for it to be loud. 

My brain just flat lined. 

~Lynnelle 

I am Blessed!

I am alive.
I am blessed!

Our beloved car is dying.
We have been blessed with a car that we are so sad to think may not last much longer.
Please pray with us for a good replacement. 
We are trying to have faith that God will provide again. But it's hard sometimes.

Also pray that we can find a way for Mom and Minnie to get Lyme treatment soon! They are sick too.
Just because they aren't as sick as I am, does not mean they don't need treatment too.
We don't want them getting as sick as me!
I have found a Lyme doctor close, but we don't have the funds at this point.


This is my off week of treatment, so you may expect a video blog update closer to the end of the week.
Once I stop sleeping non-stop.

I am blessed!

Bugs...

Tonight I am CRAWLING out of my skin. I feel like I am covered in bugs. Nats, flies, fleas, spiders, you name it.

I started treatment last Monday and I am herxing, these bugs are desperate to live and they are driving me insane!

But to bring you up to date a bit, I did finally have my awesome purple Power Port placed 2 weeks ago today. And I started treatment a week ago.

This was right after surgery and I wasn't accessed. But you can see the tiny red dot below the incision, that is where the center of my port or the septum, is and the needle will go.

And this is with it accessed!

Now, I will attempt to try to explain THIS months treatment plan, it is a bit confusing, until you live and breath it, and then you can still get confused.  :)

So treatments will only ever be on Monday, Wednesday, and Fridays, 3 weeks on and one week off where I'll go back to D.C. to see my Dr. and figure out the new plan.

This month is:
1st. week: IV antibiotic, 2 times a day
2nd week: add in an oral antibiotic
3rd. week: I'll add yet another oral antibiotic, but that one will be Thursday and Friday only.
4th week: OFF! And back to D.C.

I know next month they are going to add another IV antibiotic, plus Mepron (a thick, yellow-like, paint med for Babesia), and who knows  what all else. I may update you then, however no promises.

Anyway, I had to find something to take my mind off these bugs and the pain and all the other symptoms.

Also, please continue to pray for my friends I mentioned last post, particularly Juliana. She was admitted today, they don't know what is going on, but its NOT good. This was her first trip outside the house this year....in an ambulance.  :(

AND.....I have now realized that these "bugs" is actually all over nerve pain, just coming on slowly. :(

Calling on my prayer warriors...

Today this blog is not about me.

I want everybody who would have spent time praying for me today, to pray for 2 others who are in need of intercession: Juliana and Bella

Juliana is a wife and mother of a 4 year old and she is fighting with every bit that she has, to live. And has been for many months! I do not know all the specifics. I do know that she has had a collapsed lung for months, among many, many, many other complications!

And Bella is a 12 year old, again fighting with all she has. She is in so much pain that she has been on her hands and knees for days at a time. Not eating. Not talking, except to say that "they aren't helping me". She is so young and is no longer lucid, mentally and emotionally, she is gone. She no longer has the coping skills of your average sick patient, not to mention child.

So today I ask you to pray for Juliana and Bella, please. They are suffering so much more than I and they need a lot of prayer!

I am impossible...

Absolutely impossible.

I say I
want company.
I want to talk.
I want somebody
to come sit
on my bed
with me.

But at the
same time,
I am so
tired of people
coming in.

I want to be left alone
but I don't
want to be
alone.

I hate people
seeing me like
this.
I hate
the way I
look.
I'm not
dressed for company.

I feel horrible.
They may sit
on my bed.
And jiggle.
I feel worse.

I have nothing
to say.
I can't
think
when they ask
a question.

I am impossible.

In my head
I want you here.
But my body
freaks out
when there are
people around.

I am just simple impossible
I am sorry.

I have given it all to God. Again and again.

I have a peace that passes understanding.

Peace.

I will be ok.

I've tried to stay so positive. So optimistic. But its all run out.

All I have any longer is tears. An abundance of them.

Where is MY chance at life?

WHERE?!?!

Prayers Needed....

We are so close. I have finally gotten where I want to be. I have made it through the waiting list. I have gone off abx to build my immune system. I have gotten my sleep where they want it.

I have been medically cleared.

Yet, we are lacking. Its just outside of out grasp....IV treatment.

Please, please pray that the Lord would make this possible for me.

Many people have helped, Thank you so much! I am forever indebted to you!!

Too Much....

I remembered my blog today.
Tears come when I realize how behind I am.
I'm a wreck.

If I'm inspired, I may update more later.
After some fog lifts.

So lets just start with this week.
Meeting with anesthesiologist today.
Appt. with Dr. Wonderful Chiropractor and massage therapist on Thursday.
And surgery Friday.

That's it.

Pain

Things that cut so deep... 

People's judgement towards me.

People thinking I'm faking my illness. My serious illness. 

That people are scared of me. 

That people don't understand my illness or my needs because of it. 

That the one who did understand is 2000 miles away. (I miss you Gina!!) 

That people just see my smile and assume that I'm doing good. 

It just all hurts.

But I forgive them. 

Much love to you all!! 

~Lynnelle 

My first week in Ohio...

Tears 

Adjustments

Doctors

Exhaustion

Fear 

Tears

Homesick 

More adjustments

Pain

More Doctors

Tests 

Coumadin Clinic

More tests

An added diagnosis

And meds to go with
And more pain

More adjustments

And more tears 

And more fear

Pain.

There were a few visitors added in and my my memory foam bed, down blanket and flannel blanket in there. Those are the positives I can think of. 

But basically, a very hard, hectic week. And today I am off to Coumadin Clinic, and getting an Echocardiogram and Tilt Table Test done. Another big, full day.

And to be clear, I am not complaining. Merely documenting my week. And the some of the emotions and things that I have faced.

<3 Ciao.