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!!