Well Hello There!!

Wow, I can't believe its been nearly 18 months since I've posted anything. 

Lets just put this out there....I do not enjoy blogging. I'm not good with writing letters. Etc. I would much rather speak to you face to face. Even over texting. (The voice messages through FB are pretty nice though! Ha! But anywho, so much has gone on that I have no idea where to start and stop. How in depth I want to get with details. Etc. 

Lets just say that the last 7-8 months of our lives have been changed forever. I'm pretty sure I have taken a few years of my poor mother's life! There have been huge trials.  Lots of scary moments. But growth: in faith, hope, patience, and humility. 

I'll get into it more later maybe, but what I got on here tonight...errr, this morning (insomnia-1 Lynnelle-0) is a plea to my followers, family, and friends. My sister and brother-in-law are hoping/planning to host Eula again this summer. 

Most of you probably don't know of whom I speak...I don't think I've talked about her on here. She is the sweetest 13 or 14 year old girl from Ukraine that they have had the chance to host for about 11-12 weeks in the summer and then that, Christmas they got to host her for about 4 weeks maybe. 

(I could have some of my numbers in there a little wrong, but you get the point!)

They were planning on hosting her last summer with the dream, and hope, and much work done towards adopting her. However God a different plan, little Sully was due to arrive in July. (I think...can't remember his birth date) They simply couldn't do both. Not realistically speaking.

But now that my sister has mostly recovered from a hard, nearly fatal birth, she has been desperately looking for a hosting agency, but had been unsuccessful. Until the other day one of her hosting friends messaged her say that she thinks she had "...found (your) girl!". Sure enough here she was on a hosting page, "ready to go"! The Joy in this family can hardly be contained!! 

So what I am presenting to you all is this: in order to be able to host Eula for the summer again, and because they are so far behind in finding what site she was posted on, being up for hosting, they have the short timeline of having raised $500 by the end of this weekend! 

I'm going to post a link to my sister's funding page...if you feel led to donate monetarily, It will be so gratefully appreciated! Or you could donate homemade items to sell. Or you could buy some of her homemade ketchup that people have been crazy over! (No, seriously, people are ordering this stuff from her!)

But I guess above all, will you pray with us that first and foremost Summer hosting would be made possible. And that the hope and dream of adoption could be made possible. This is all Lord willing of course! 

To say that we, or at least I am excited is an understatement!! 

Here is the funding page: 

http://www.youcaring.com/other/summer-2015-for-eula/320496

Eula - Summer of 2013

Mike and Jessica, and 2 of their now 3 boys. And our sweet Eula. 

So happy! And look how she just fits right in?!? 

I love and miss her so much. Even if our relationship had many barriers: language, culture, life, etc. But built a good relationship through....Skype!! 

Help us bring Eula home to her forever family! 

Prayer Request

I'm sorry that I haven't finished my hospital story. I have been so sick and exhausted and not able to read or concentrate. So writing has been out the question.

However, I do have a prayer request in the mean time. That you would pray that we could have the funds for treatment. Currently we are running very low and IVs are nearly completely out of the question, however, I am badly in need of them!

I am going downhill quite rapidly, as I am not on treatment, and for the last 3 months or so, I have been on oral antibiotics, all the while going downhill. Just as we had to stop the IVs due to lack of funds, I had started to see some progress. But with a couple rounds of oral treatment, and now completely off treatment, I am struggling big time.

I have been VERY blessed with the help from others, as they have had a heart for me and my situation, whether they knew me or not. And for that I am grateful beyond any words!!

I have been so blessed! Thank you to each one of you that has blessed me financially, through prayer and support, or through little things like visits, mail, etc. (Those little things are actually big to me! They are all big.)

Also, I ask that you pray for my mom and younger sister (my caretaker). They both have Lyme Disease and it is tough for them to go to work every day or to get up and take me out to all my appointments.

Also, we have black mold in our house, making it nearly impossible to get well until it is completely taken care of, as it is extremely toxic. I suspect that this is a big factor to our health and lack of healing. Honestly, this is one of the scariest things for me in this illness. I'm fighting so many battles, so many infections, toxins, etc.

Please pray that we will know what to do in the long run. Its scary, not knowing what God has planned for us. But we are trying to lean on Him, to show us the way, to lead us in the path He has planned for us and to accept that.

Thank you in advance for being my/our prayer warrior!
~Lynnelle

Part 1: LONG Over-due Update

I am so sorry that there hasn't been an update on here for so long! There is so much I could update you on but we will just skim the last several months. (Honestly, I can hardly remember them, my memory is really really bad right now. :(  )

Until about 2 months ago, we switched from IV antibiotics to orals. This has NOT been an easy change, but due to lack of funds, we felt that that was the most wise way to go.

I have a bad stomach, so oral antibiotics just push that farther. It just seems to add to the internal/abdominal pain and turmoil vs. IVs not quite so much but MUCH more to the head. I don't know, both are hard!

So we will back up a couple weeks here:
Monday morning- my home health nurse came as usual. I had left my port accessed for her, so that she wouldn't have to stick me, not that I'm afraid of needles by any means! When she was done she deaccessed me, ran the needle to the sharps box and quickly put a "pretty sparkly" band aid on.

Late that night I took it off and to my horror there was a whole in my skin! Keep in mind I do have EDS, so my skin is more fragile, and it was quite thin over my port, but I could not believe that she didn't notice, or just ignored this whole that I could see my port through!

So I had to properly clean it and dress it and even though it was the week that I was supposed to be dripping fluids, I proclaimed that NO needle was entering until I felt comfortable with the way it looked. It closed up great and was healing well!

However by Sunday night Monday to Sunday, 1 week), before I was to start treatment on Monday, I was so dehydrated I decided,  that it had healed well enough that one stick would be ok. And that is where the next store time starts. And let me tell you, its a roller-coaster, ride at your own risk!

And I want to say a big shout-out  to all the people who come over here from  http://lymewithpurpose.wordpress.com/ faithfully, waiting to hear something, I'm sorry to disappoint for so long, but now you have more to hear than you might want! lol!

I had NOT planned on being awake all night, to even see the sun set, but here I am. Pain and insomnia have a way of doing that to you. I took pain meds, I took meds to sleep (and trust me, what is prescribed should definitely know a human to sleep! But you would have thought they were sugar pills.

I guess its through the pain and frustration that finally gave me the final push to just get on and update people. How do people know when I'm not blogging? How do you know how to pray if I don't update? But like my friend Andrea just said, it is through your prays that I can keep going, not falling into depression, and not becoming so bitter like so many other people with Lyme. If you are wanting specific ways that you can pray beyond the depression/anger/bitterness:

• I'm in Extra constant pain, often quite uncontrolled 
• We are in need of financial support in order to continue with treatment and other medical bills now. 
• And that the Lord would give us guidance in upcoming situations/decisions.

Also a BIG Thank you to Andrea! She has given me a great way to try to relieve my pain in bed and it is working. Kind of. Its starting to flare up again, but I think in the long term its going to help a lot!! Thank you Andrea!! ::grin::  (just for you :))

So part 2 should hopefully be up soon! I want to get it up before I forget EVERything....my memory has taken a bad downward turn for the worse.

The sun is about to shine in my face and I'm exhausted!! So I'm going to get something in my stomach, take my morning meds and TRY to sleep!

Ciao for now! 

Post CCSVI Surgery

I'll just go ahead and say it- I'm not good at this. This blogging thing. Writing has never been my forte and remains that way. But I will go ahead and try to give you an update on my CCSVI surgery, the following treatment, and where I am now.

So I had my CCSVI surgery on February 27. We flew into Atlanta the day before and an amazing cousin picked us up at the airport and fed us some AMAZING tomato soup! Kudos to you Katie, you are an amazing cook!! And Jason, you make a mean cheese sandwich. :) And then we just crashed.

The next morning they were so kind as to take us to the Center where I had the surgery, I had to be there at 7:20am. If you know anything about insomnia, Lyme, and mornings....it was tough! And I wasn't allowed to take any meds. Not cool.

They very quickly took us back, I got changed and about an hour later, after all the legal stuff, exam, question, etc, I was on the operating table. They were great!

Let's do this!

 And my nurse, after seeing that I was allergic to tegaderm, asked me if my port dressing was an IV 3000 (1 hand)? I was speechless! Yes, YES, YES! It is! But how do you know about them?? He remembered using them in the hospital. He is the first nurse that I have come across that had ever even heard of them! It totally made my day! :)

Surgery was fine, I asked to have as little sedation as possible, so I had a Xanax and a tiny bit of Versed....which has very, very little effect on me. There were a few times of pain, but nothing I couldn't handle, by all means! However, afterwards was another story!

Hooray! I made it!!

After surgery they make you lay completely flat for 4 hours and you aren't allowed to moved the leg that they used the vein in. But I was in so much pain it was all I could do to not lay there and just cry like a baby.

 I have a high arch in my back- when I lay flat on the floor, you can put your arm clear under my back. And the beds were just like ER hospital beds...a tiny foam mattress....nothing really. I asked for pain meds and they let me take one of my Vicodin...but Vicodin doesn't really help me very much at all really, but it did manage to relax me enough to be able to sleep for about an hour....to escape.

You can only imagine the relief when I was allowed to get up and stand....never felt better!

We were quickly discharged and taxied to our hotel where I was able to lay down, take my meds and try to relax. However my body was just so upset by then....I had a hard time!

The next two days were filled with treatments, sleep, and a lot of ugly symptoms. But we were able to just stay in our hotel and not worry about too much!

On Thursday after my surgery on Wednesday a Lymie friend, whom I had yet to meet, but we had groan close...phone calls, texting late...or early ;) Just talking about normal things, things that every other 23 year old talks about. Wait, this isn't making sense.

Anyway, my friend Andrea drove nearly 4 hours to come meet me! Well, her mom and little brother, who rarely leaves her side, as he is her Lyme buddy, were with her as well. But I felt SO honored that they would drive so so far only to visit for about 2 hours and then go back home. Wow. Thank you Andrea! You really did brighten my day and meeting you was amazing, it felt like I had always known you! <3

We both have medi-ports and were accessed AND we both have medical bracelets....we are twins! :)

(Yes, I am aware that I look like a scarecrow....I was pretty sick and unable to get out of bed to fix it. Its life. Especially the life of a Lymie!)

As far as flying....you know how you always manage to get a seat in row 20 or something? Well, we always ask for something closer, so that I don't have to walk so far. Well, this time, we got First Class BOTH ways, coming and going. We couldn't believe it! It was so nice...nicer seating, less walking, and better service.

Oh yes, on the way home, our flight out was so early that I could only do one of my IVs in the hotel before we left, leaving one to be done in the airport...this is where Command hooks come in so handy!!

And since it didn't finish dripping, even after speeding it up, we had to finish it on the plane. I was worried how it would work, with the pressure and all that, but it actually worked out great. We were first to board, we clipped in in the overhead compartment and let it S.L.O.W.L.Y drip. I was sure it would never end! However the plane took longer to take off than expected and it was finished by the time we left. It worked out great! 

Ok, this is getting so long that if you have made it to here, you are a warrior! 

The effects of the surgery? 

Right away I noticed that the right side of my face was tight, and it remains that way...I'll be discussing that with my LLMD next week. 

Also, I am a little bit more steady on my feet. My sister who works with me a lot can see it, but my mom and I'm sure others have a hard time seeing it. But its there. I still can't walk right, by any means, but its just a little bit better, wish is valuable!! :) 

Also, I'm wondering if possibly it could be helping my head pain....there are times that I have a bit of a break in my headaches and I wonder if this may progress more...?? Who knows! 

Other than that, The treatment after surgery was brutal, but for now I am off, and I see Dr. Jemsek next week, so we will see what he has to say then. 

And when I got home, I had a puppy that missed me! 

Until next time,

Lynnelle 

(This really is so long....this is why I hate writing. I don't know what to write and what to leave out. I know some people want to know every detail, and I'm SURE others would be happy for me to just say that I am OK.)

God's strength

I get a lot of comments on how strong people think I am. 

How they don't think they could go through this. 

To carry on for this long. 

But I want people to know that it isn't MY strength. 

It is God's strength, carrying me through. 

I could never do this on my own! 

There have been many days that *I* gave up. 

But God came in and carried me.

Or gave me the strength to pick myself up. 

So I want you all to know, that it is not MY strength, 

it is God's that carries me through each new day! 

We can do nothing on our own. 

Much love to you all!! 

<3 <3 <3 

Lynnelle

Treatment, Puppy, and CCSVI

Well, Its been way too long since I've updated, and I feel badly about that! I know I have readers, but I'm not giving them anything to read! Or anything to update on, or pray about.

Thinking of prayer requests, will you all please pray that we receive/can raise the funds for treatment after surgery?! Dr. Jemsek has a pretty serious treatment plan and we Seriously need help! Please pray with us!!

This year started out with a Bang! My mom and Grandpa were in the hospital at the same time, having heart caths on the same day. Previously Mom was supposed to take me to my appointment in D.C. on January 3, but suddenly plans changed and William went, thankfully he was still on winter break from school!

Thank you William for going with!

While we were at it, we decided to go see Grandpa as he wasn't doing well. Its only 2 hours down from D.C. area, so we couldn't get much closer if we tried!

I might also note that we were able to visit my Aunt Linda Hoover and her husband Derrek, whom are living in D.C. It was lovely seeing them and having dinner there....I guess, I was quite out of it! During dinner William kept hitting my leg, because I was falling over, as if I was asleep. I don't know where I was, sorry Aunt Linda and Derrek! :-/

At my appointment, we decided to only do half a cycle of meds, and after the round, I would have a phone consult with Dr. Jemsek to see if the added Xylitol and Lactoferrin made any headway with the bio-film. I did the 2 weeks of IV treatments and unfortunately the added film busters did nothing.

However, the Friday before I had my phone appointment with Dr. J, I had fallen and hit my head. I always have a headache. Always. But this just made it worse. But it made it worse and worse every day. By Monday I couldn't handle it and since I AM on Coumadin (blood thinner), we decided to go to ER just to make sure I didn't have a bleed!
We've had more experience with brain bleeds and close calls than we want!!
I was fine, no bleed, so they gave me a shot, which didn't help incidentally, and sent me home.

Since I had hit my head and had stirred up all my symptoms, particularly neuro, he didn't want me on anti-biotics the next week, so instead I did a week of Diflucan. And boy is that drug evil!! I got so sick. I was out of my pitiful mind.

We decided to do a detox bath...all fine, except that I was SO dizzy, double-blurry vision, and absolutely no co-ordination. When I was sitting on my bedroom floor I just fell over...ended up knocking my big space heater over. Haha!
We will just say that the detox bath thing was an experience I don't wish to ever repeat. Minnie had to help me in, help me on the shower chair later and stabilize myself, dry off, dress, and pull me to bed. All the while my world is reeling. I can't focus or see. It was awful!
I got back into bed and curled up was out....checked out, or out of my head, or asleep....I don't know. I thought I was awake, but Minnie took pictures of the puppy coming and curling up with me and sleeping....so sweet!!

OH! I forgot to mention, the first week in January, we started puppy sitting an adorable but nixy yorkie/maltese mix, and we will have her for 4 months total! This as provided plenty of challenges, yet, we have discovered just this last week how attached we are already, in 7 weeks! Oh my. Good byes will be hard, I'm sure.

Ok, so I did the week of Diflucan, found out how evil the drug can be, and incidentally  I was herxing, it wasn't an allergic reaction, in case you are freaking out or something.

  Randomly on Sunday night, I started having this awful chest pain that I get sometimes. It starts with banding, then shoots pain up my chest, esophagus  throat, into my jaw and sort of settles into the roof of my mouth. I don't get this often, but I had mentioned it to my Cardiologist and he said that the next time it happens I had to go to ER. I was just sitting there, waiting for it to go away, so I wouldn't have to go in (haha) but it just kept coming in waves....awful pain. So when I said I wasn't ok, we headed in. To the ER. Again.

Last Monday, when they stuck us WAY back in a deserted land of a room, they told us to come back after Wednesday and the second half of the ER would be finished and they would have over 40 beds then. Well, we were back Sunday. And I got a full tour of the whole new part, all from my hospital bed. Not really a funny joke, but you have to make the best of it all! It turned out that it wasn't any cardiac event, and upon hearing of it and my "gallbladder attacks", Dr. J said that my vagus nerve was involved.

Then on to this last week, starting low dose, oral anti-biotics. Just for last week and this week until I leave next week for Atlanta.

Atlanta you say? Yes, I am going to Atlanta, Georgia to have CCSVI surgery done. It is to unclog my jugulars, in order for blood/treatment/anti-biotics to flow through more freely, and to be more effective. My ultrasounds showed severe blockage and I could really use more oxygen in my brain....I've sure been having POTSy attacks a lot lately! (This is not the cause of POTS....POTS is when your heart can't properly get the blood to flow back up to your heart and lungs and brain....but it does result in a lack of oxygen to the brain....and lightheadedness, dizziness, syncope, presyncope, etc) Hopefully the surgery will have some sort of a more immediate effect, but we will see when we get there and it is over.  :)

Last week, the weekend in particular, and so far this week have been wracked with pain. Honestly, I think it is pure will power and the promise that I could and just WOULD update you all tonight. But I think that is the only reason that my hands are lasting this long. BUT, just in time, I must go. for it is far too late.
 Pain is a mean thing. It knows no time. I hope to update you all on the CCSVI surgery, but I put no promise on the time! ;)

Be well my dear friends!!

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.