PICC-ture post....

The last couple days have been extremely hard with ER visits, infusion centers, Drs, etc. And here are pictures to explain some. But first, so you know why it started going down hill so, I'll give a quick intro.

 I started developing symptoms of a blood clot or infection in my PICC line, hence the ER, a blood clot was found, and the line had to be taken out. That is the VERY short story of a long and VERY complicated process. Just let the pictures explain the rest.

First ER visit.....much waiting. The placed was packed!!

How many lines and sticks does it take a Lymie to get a blood clot dx'ed and her PICC line removed??

A very faithful friend for over 9 months. 

Kissing it goodbye, preparing myself for the removal. I had no idea...

I was in need of much grace, and a friend suggested I write it on my hand. I loved it! 

Second ER visit.

ALWAYS were leggings or something to the ER. You WILL be exposed and freezing cold and need them!! 

The aftermath. The biggest purple spot was the insert site. 

I how I feel now. I feel as if my 5th limb was hacked off. I knew it had to come out. Wanted it out before it caused more problems. But wasn't really prepared. And I'm still left with the clot pain. And my arm feels weird just rubbing against fabric since I've worn stockinette every day for more than 9 months. 

And last but not least, God's grace is sufficient!! 

In the mean time I have to go to the infusion center daily for Lovenox shots, and Coumadin doses, and INR testing. That's for about a week, then lots of other follow up stuff that I have no energy to explain. 

Thank you all for your love and support who have been following this on FB. I'll be ok. Am ok. Just working through it. And should have another line in 3 weeks. 

Happy New Year!!! 

<3 Lynnelle 

I just want to say,

I love cable knit! 

LOVE

cable knit. 

That's all. 

D.C. trip - part 2

So, I am finally getting around to updating about my trip and all.
Its been a tough few weeks and the last couple of days have been particularly hard. But I am trying to get this done and out of the way.

I think part of the reason I have been so disconbobulated about righting about my visit is because I pretty much knew what they were going to say, so it wasn't a surprise or shock.

So Wednesday morning we had to leave our hotel at 6am. to catch the shuttle to the train station at the airport, we trained down to D.C. and then caught a taxi to Dr. Jemsek's office. And we arrived at 8:30, right on time. We were VERY happy that we had decided not to drive down into D.C. using our GPS!!

We met with the PA that we had scheduled with, as it was faster to get in with her, and fell in love! She was so kind and compassionate and we just really cliched with her. (Afterward it was a little sad to know that she would not be a part of my care as she does not deal with IV pts and that is the treatment they are putting me on.)

The short story is I am very sick and they want to get me a little better and get some symptoms under control before we start his intense IV therapy. So until the next time I see him, I am starting some new meds and supplements. Also getting a nodule on my thyroid checked out and a giant list of lab work done.

Also, they are concerned about my heart as I do have a lot of heart symptoms. Lyme and Babesia both cause a lot of heart symptoms, however, I have a pretty extensive family history of heart disease and failure. So I am going to get a full cardiac work up done just to be sure that there isn't other factors at play.

Dr. J's protocol pretty much is a pulsing plan. M/W/F are treatment days, 2 weeks on, 1 week off. He hits it with up to 4 different abx, to treat all the different forms that the Lyme bacteria takes on. And on the off days I would be detoxing with lactated ringers (basically like saline) and other stuff.

When you make the appt they say to expect to spend 3 hours in the office, plus you have to be 30 min. early to fill out final paperwork. Well, we were there over 5 hours and to say that I was completely exhausted is an understatement. I could no longer answer any questions or make any decisions. Everything they were saying was like a foreign language by the end.

After the appt we spent a while walking around (me riding in my wheelchair) trying to find food. However, the little bistros and delis aren't meant for whealchairs, whether no room for one, or the restaurant being down a flight of stairs.

Finally we just caught a cab back to the train station and went back to our hotel. I think it was after 4 when we got back, so it was an extremely long day!! I had just laid down when my brother and his family arrived and shortly later, my cousin and her family arrived.

Our hotel room was absolutely overflowing with people, kids, and noise! haha. But I was very happy to see everybody, it had been a long time. Its times like that where you do what you have to do, and you usually make it. Which I did!

Then Thursday we drove down to Virginia to visit with my Grandparents, which was SO nice!!! On the way down I had a pretty big gallbladder attack that just kept going, we had to stop about 4 times I think, for me to get myself together and go back down the road. It was intense but I didn't feel like wasting any more time than I had to just sitting along side the road!

My visit in VA was nice. Busy and a bit hectic, but nice. I got to see lots of family and even meet the man who will become the newest member of the Hilty clan. But Saturday night brought about a tragic accident where my cousin was shot in an hunting accident on my Uncle's farm where my Grandparents live.

He is going to be ok but I ask that you all pray for him and the family. They are facing a possible amputation of his right arm and this will be a tough decision to make! There was other abdominal damage done but they were able to fix him up, now its just a matter of time for that to heal.

So the shooting brought a whole new form of hecticness. But I was able to spend some special quality time with my Grandma after the helicopter, emergency everybodies, and family was all off to the hospital.

Then Sunday we drove back up to Baltimore and Monday my sister and flew back and my mom drove back to Ohio. And now you know the rest of the story. I will attach a video I made from the pictures I had on my phone from the trip. Enjoy!

You may be a Lymie...

....if you didn't even realize that you wrote the previous post.
I got home from my trip and wondered what everybody was commenting on, went and checked it out and had a little surprise. haha...nice.

I'm sorry to you all who have been wondering what is going on and how the trip went and all. I am home and just trying to recover. And I've been in a really bad head space and not felt like writing or had the clarity.

I'll be back with a big update, soon hopefully!

Thank you all for the prayers during my trip! I literally felt carried on the wings of prayers and love.
So thank you!!

D.C. trip - part 1

Well, technically, we are in Baltimore, but that is not the point.

So, my sister and I flew in Monday and had a surprisingly uneventful flight/s.
Yes, I was sick, and felt pretty terrible and in a lot of pain, but I was able to do it!

Getting through security and to our gate, a VERY different story!
They had no idea what to do with me and all my medical liquids.
Talk about utter chaos!!

But the entire day I just felt carried on the wings of prayers and so much love!
I know a LOT of people were praying and thinking about me and I really felt them.

Now today, well yesterday by now but Tuesday, I expected to complete crash and but that kind of extreme fatigue/exhaustion where I can hardly move a single muscle, as this is what usually happens.

BUT, no. I keep having these big adrenaline rushes.
Like when you hear some really bad news and the blood drains out of all your limbs and you feel cold and half hyper.
Yeah, that.

I'm exhausted but still "going" (if you can consider tiny little trips to the bathroom and sitting half way up in bed typing out a post "going"!).
I just keep having these rushes. One after the other.

I'm having a really hard time keeping anything down.
I've tried to eat 2 or 3 times today and end loosing it each time.
But what is unusual about that? Nothing. Very normal for me.

I just wanted to sort of document how this trip is going and I know a lot of people who are excited to hear all about it so I am going to try to give you at least a little update each day.
Not promising, as the crash is likely to come eventually, but I'll try.

I'm getting another rush right now, it is 1:55am.
Hmmm....crazy body.

Sitting here realizing that I have to be ready to leave in 4 hours to leave for my appt, I'm starting to get nervous.
This is actually becoming a reality.
Wow.

OH! I had visitors tonight. My cousin and his wife and kids came to see us here at the hotel. It was tough, with the noise and stimulation and everything, but I managed. YAY!
**Thank you Doug and Dinah! Also, the pie was good, its my favorite!!  ;)**

Its nice to be able to see family while I'm on the east coast!

Ok, the blood still hasn't returned to my feet and aparently not my brain either, I am totally fogging up.
And my mom is snoring like crazy. Annoying.

Love Languages and Spiritual Gifts...

So since the beginning of time, my love language has been touch.
But recently I've really been questioning that.

Over the last 2 years I've really been into giving other people gifts.
Which I found so strange since that wasn't my love language.

But,
I think it actually is my love language.
I think Lyme has changed it from touch to gifts.

When the slightest touch can hurt so much.
When you have bad social anxiety.
You don't crave/need that touch.

However, gifts are something I can appreciate SO much more now.
And I love give!

I never thought something like this could change your love language, but obviously it can.
Maybe it will only be a temporary thing?
Until I am better?? I don't know.

But interestingly enough, I think my strongest spiritual gifts is giving.
This is so interesting as it ties into my love language.

These are times where I wonder why God doesn't bless those who enjoy giving so much, great wealth.
I can think of SO many things I could do and people I could help, if I had the money.

But for now, I work with what I have.
And in the meantime, I think I drive my sisters a little crazy taking stuff to the post office to be sent out to all the people I love!

Thank you sisters!!!

**So what is YOUR love language and or spiritual gift? I would love to hear from you all!!**

Traveling to D.C.

In 2 weeks I will be in D.C. at the Jemsek Specialty Clinic.
In search of some answers.
In search of a better long term treatment plan.

I have so much hope that I find answers and solutions to some issues.
I have complete faith that I will.

Its going to be big though.
Flying for the first time while so sick.
Gone 8 days.
Just huge!

But I will make it.
I'm a tough cookie.
And I get to see my Grandpa and Grandma for a few days!!
Can't wait.

Technical difficulties...

I'm sorry my blog looks so strange, all the double spacing, etc. I don't know what is going on and I have no idea how to fix it. I'm really not good with technology and all that good stuff...so I will have to recruit help.

Also, I need a blog makeover, anybody want to volunteer??  ;)

Company and Reality

So this last Sunday early morning, my wonderful cousin came to visit for a few days. I've been so excited to see him, its been probably 18 months since we last were together.


I couldn't believe how ok-ish I was feeling. Now, I was by no means feeling great or even good. But I was able to be out of bed and sit on the couch a few times.


Yes, I did have to medicate several times in order to handle the noise and commotion, but for the first 2 days, I was making it work. I even got out of the house to go for lunch and have a ride in his sweet rental car.


But by day 3, I was starting to crash. Headache/migraine all day(lasted 3 days) and in general, stuck in bed. But it worked out since he and my little sister went to the coast and I wasn't going anyway. And he left Wednesday. So it was a short trip but super nice of him to come!!


But having company made me face and really see the reality of my situation. I often just float along in denial of how sick and limited I am. I feel like garbage all the time, but I guess I've come to a place of acceptance of the situation where I don't pine away each week to go to church, or youth, or shopping. In fact, they look quite unattractive to me right now, being so sick. This is just normal life for me now.


But having company here and still spending most of my time in bed or laying on the couch, unable to go out with them, to really have the best time, reality slapped me in the face a bit. I really am sick. And it really is serious.


YES, I already know all this, but when this life becomes your normal, you just get used to it. I think its partially a coping mechanism, you just can't lay here each day wishing for the life that you can't have at the moment, you would go batty!


I have since found out that a lot of different people were praying for me this last week and I can say I felt them so much!! I was able to get through and enjoy some time with my cousin, which was wonderful!


 I did however really crash the day he left, crashed pretty hard. Its taking me a while to pick back up but it was worth it! The sad thing was to see how hard I crashed, over being out of bed for such a small amount.


Literally, I was up with them for an hour maybe Sunday evening, out for lunch and a ride for 2 hours Monday, and then about an hour and a half Tuesday night. (I really can't remember for sure, but that really about it.)


I want to thank each one of you who were praying for me! Thank you so much!!!
And of course, Lee for coming to see me! (I don't know if he reads this, but thats ok! :)

Blogging...

I have so many things I want/need to blog about. 

But alas, I've been just way too sick.

I was even going to give you a sneak peak of what my next post was going to be, but I forget now. 

Sorry. 

If you have emailed, texted, sent messages on my facebook or anywhere else, please know I am not ignoring you.
I know I am WAY behind.

I am just really sick.

In other news, I am excited for this weekend, my favorite cousin is coming to visit!!
Can't wait to see you Lee!!! 

Gratitude!

So I haven't done a blog post recently about the different ways I have been blessed and that's a problem.
I want to say how blessed I am and show my gratitude for it all!!

I have had several people send me care packages, unfortunately, I can't remember who all and I don't often remember to take pictures. (But yes, I do send out thank you notes for each one. At least I try! If you have sent something and haven't received a TY, I apologize!) I LOVE getting packages and each one brings joy to my heart! Thank you so much!!

I have had people sending financial support, which is amazing. This disease and everything it entails is financially crippling and each gift is so greatly appreciated!! Thank you, thank you, thank you!!!

People have sent balloons, cards, flowers, and their love. I can't say how much it means to know that you have not been forgotten and that people care!

Thank you to each person who has sent something, thought of me, or prayed!! I am really indebted to each of you!

One thing that I did manage to get pictures of is something my sweet friend Kate sent me, Emi Jay hair ties.

They come packaged up so cute!! 

Not such a great picture, what do you expect with a cheap phone camera? 

These hair ties are amazing!!! 

They do not cut your hair. No metal. No glue.

They do not dent your hair. 

And they are super fun!!

Thank you Kate!! I am thoroughly enjoying them!!! <3 

My Bed...

I have not adequately mentioned my appreciation for my warm, cozy bed. 

I adore my bed. 

Love it! 

I am SO thankful that I am blessed to have such a luxury. 

Multiple blankets. 

Soft jersey knit sheets. 

Memory foam mattress topper. 

Thank you for my bed and blankets, Lord! 

You have blessed me immensely!! 

Amen. 

<3 <3 <3 <3 

Lynnelle

One of those moments...

Ever have one of those times where you have virtually NOTHING presentable to wear?
Yeah, that is me right now.
One of the disadvantages of loosing 75 lbs and dropping 6+ sizes. No joke.

Not that I go anywhere but to Dr. appointments, but you still have to look presentable, pajamas(the majority of my wardrobe) don't quite cut it.

I typically love shopping, but its a lot less fun when you have to do it online, and with a very limited(or no) budget.
(Have no idea where I'm going to find affordable, warm, comfortable boots.)

Question of the day- Are UGGs worth the price?? They look marvelous but seriously, the price is absolutely ridiculous!!
If you have had a pair, please let me know what you think!! Thanks!

Recovering

So after a week of recovering, I am starting to wean down off the Oxy, my pain is more manageable, and my swelling is going down. I still have a couple pounds of water weight but it will gone soon, I'm sure. 

I had been back on my cane around the house, which I am really stubborn about, but I'm pretty much off it again. Which is nice, I hate using the cane around the house! Problem is my back muscles are so atrophied that I rely largely on my abdominal muscles to carry me around, and when they were impaired, I just couldn't move. But we're back with the program. Almost, still can't lay flat out very well, and sitting up is a bit of an art.  :) 

I wanted to emphasize just how amazing my experience with the River Bend Hospital was!! I've had some really really bad experiences there before but with the ER and surgery this time, I was SO impressed. They really took care of me the whole time, watching out for me and keeping everything in MY best interest. I didn't have to fight or argue a single person about the whole Lyme thing, which was SUCH a relief! And lots of the nurses were actually interested in learning more, or actually knew somebody who has/had Lyme and wanted to just talk about it. 

The only negative is that my PCP/LLND did confirm what I suspected and was concerned about in the hospital, my IV did get infected. It is still very bruised and sore and the lymph nodes in my elbow there are swollen. She said that she can feel the cords of scare tissue all the way up my vein. I'm hoping this heals up and repairs itself, I don't need anymore scare tissue in my one vein that actually usually works! I am still having fevers, which I thought should have stopped by now, so she suspects that I might still have some of that infection going on, we did labs but I guess I won't get to hear anything until Monday. 

I want to thank everybody for all your thoughts and love and prayers!! God is good, and I am healing. A bit slow going but I'm OK with that, its happening. I hope you all are well and spreading the love today!! 

<3 <3 <3 <3 

Lynnelle

Goodbye dear gallbladder!

So it finally happened. The gallbladder has been removed. It was quite sudden and unexpected, but perfect timing I say! 

I have been having regular gallbladder attacks for a few months now, I would say an average of 2 or 3 a week. Now, most of them are just mild to moderate attacks, and I have a really high pain tolerance, so I just dealt with them. I've been procrastinating about having it taken out even since they told me that it wasn't so bad that it had to come out, and hoping that I could somehow avoid it. (Not sure how I thought I was going to do that.) 

But early Saturday morning I started into the second major attack of the week and this time it didn't let up, instead jumped to level 10 pain and stayed there for at least 45 min. I was almost delirious with pain, and hardly in control of my body anymore. So I woke my sister up and we went to the ER.  My pain do come down a little but was still horrible. 

Thankfully the ER doc didn't fight me this time about whether it was my gallbladder or not, and he actually OFFERED a CAT scan before I even got the chance to request an ultrasound. It was such a blessing! In the mean time they gave me and IV, yes, I still had to get one since I can't have contrast through my PICC since it isn't the power PICC. And I got Zofran, Dilaudid (such a miracle worker!!), and then benadryl to help with the remaining nausea. Lets just say I was pretty stoned! 

Waiting for the dilaudid and Zofran to kick in...

The CAT scan came back and they compared it to the results of my ultrasound that I had done a couple months ago and it was significantly worse, and there was fluid building up around my gallbladder. A surgeon looked at my tests and said that he wanted to take it out that day, so we went with the plan. I was a little shocked, seeing as I had expected to go in, having to beg for anything, and being sent home with maybe a script for pain meds. And here I was, preparing for surgery. 

Laying a mere 10ft. from the site of my horrific blood patch. And the Anesthesiologist who worked with me this time remembered me from the blood patch, though he was not a part of that experience. (It made me wonder what was going on that he knew me from that time, 9 months ago, yet he wasn't the doctor that worked on me....hmmm....scary!) I told him how horrific it was and he was getting sick just thinking about it. Yeah, it was that bad!  

But I know that it all happen this way for a reason. I had been procrastinating about the surgery, not wanting to loose yet another body part, with the risk of yet another problem with my stomach/diet, the nearly inevitable setback from the anesthesia and surgery, and just the general idea. But as it happened, I didn't have time to worry about it, and I was in enough pain to actually be THANKFUL that it was all going to be over with very soon! Isn't God's timing simply amazing?!? 

At the time it seemed sort of bad timing, with Mike's being gone and it just being me and Minnie here. But as it turned out, it was perfect. We didn't need to worry about the kids, or having food ready, or any of those things that come with more people and especially kids. This way Minnie was able to stay with me the entire time, no worries. AND, I have an entire week to recovery until everybody is back. 

Getting ready to leave on Monday! 

The surgery went well but they wanted to keep me Saturday night for observation....I think I was having a long hard time coming out of the anesthesia, as I always do. But then we were having a hard time managing my pain. I was taking Norco, Toradol, and morphine, and it still wasn't cutting it. I can handle pain, but they really want you to be able to breath, move, and cough when you need to. Shocking, I know. Finally they switched the Norco to Oxycodone and it helped a lot! 

I was also having problems urinating, something said usually only happens after you've had a foley, but I didn't to my knowledge, so they ended up keeping me the second night as well. The nurse was concerned that I was just going to end up in the ER later, which none of us wanted. It was so nice that they were so willing to help me so much! I have to say, its the best experience I've had with that hospital yet! The Doctors and nurses and CNAs were all so nice and helpful! 

Unfortunately, I still had to have an IV, since I couldn't get the contrast through my PICC line. By Sunday afternoon it was bleeding but the nurse didn't seem concerned, said that it was common. But the evening shift didn't like the way it looked, it was streaking up my arm and was pretty painful, so they removed it an used my PICC from then on. It still hurts pretty badly where it was and it is bruised all along the vein and up my arm, so so strange! 

You can't see it that well since it is washed out. 

Well, I've been sitting here staring at this screen, my mind blank for probably 30 minutes now, I think I'm fried for the night. I'll try to write about the rest later. 

In the mean time, I am on oxy every 4 hours, SO thankful for pain management!! 

Also, I have to go to the dentist in the morning. Not really looking forward to having to sit on that hard chair, so still for so long, but I do know one thing, I won't have oral pain. This dentist out here can numb me like NO OTHER dentist ever has! The only 2 times in my life that I haven't been in pain while having dental work done are with this dentist. He is great!! 

Thanks to everybody for all your love, thoughts and prayers over the last couple days!

I'll write more later....

Ciao.

::Edit:: I remembered what else I was going to say. 

So today I was allowed to take the little dressing off my incision and just leave it with the steri-stips. So we took of the dressing but it hurt so much worse with it off that I ended up taking a PICC dressing that I can't use anymore, and cut it down and made another dressing. It was slightly oozing and it hurt to have just my shirt brushing my stomach so I figured it best to dress it back up.

Looking pretty good, but feeling terrible. How typical. 

I'm still swollen about 5 lbs between my belly and feet/legs. 

I'm excited for my preggo belly to go down and to be able to sit up and lay down normally. In the mean time, a BIG THANK YOU to Minnie for all your help!! 

Love you sister!!  <3 

I have my follow up appt next week. I am excited to see what the results all came back as. I only had one request, to test it all for Lyme Disease!  :)  

That's all folks! If you made it the whole way through, congratulations! It was a long one today! 

15 years

15 years ago today is the day of my first memory.

I was in first grade, sitting at my desk. My teacher came and said to get my book bag ready, that my Uncle Tillman was coming to pick me and my siblings up. Of course, we had no idea what was going on. I just remember seeing their van pull up, and my brothers and I got in and they drove us home. They were very quiet, didn't say anything. When we walked into our house, my Grandma was sitting on a dining chair, smack in front of the door, softly crying. I thought that was very strange.

Then my mom gathered all us kids in the living room, along with a lot of other people, and handed us hankies. Then she broke the news that Papa had died. Everybody in the room burst into tears. Except me. I was 6 and didn't know the magnitude of those words. I just remember sitting there watching everybody crying, holding my hankie, wondering what I was supposed to do. And that is all I remember of that day.

And this is where my memories begin. I hate it that I don't remember my dad. Everybody says what a wonderful man he was. How he loved us kids so much. How he was such a strong man of God.

I find it so unfair that SO many people got to experience that, yet his own kids didn't get that privilege. I could really use a dad right now. To hold me and tell me its going to be ok. But I don't have that, so I lean on my Heavenly Father to comfort me.

The last couple years, this date has been more of a remembrance/celebration for him. As the years pass, the pain of loss slowly resolves. But I think this is the hardest year for me yet. I need him now more than ever.

Happy Heaven-versary Papa!!! 

You've got the best seat in the house! 

I love you and miss what could have been! 

Love~Lynnelle


And please don't comment on how *cute* it is that I still call him "Papa". It is all I ever called him, it feels very unnatural to call him anything else. Its not a cute factor. Thanks! 

So many thoughts....

I have so many things I need to post about. 

They're all just swarming around in a giant cloud of fogginess.  

I'll leave you with a picture. Today, I just want this fat little baby back.

Ghea, you are the love of my life.

 I wish you wanted more to do with me right now than coming in for chapstick. Lol....I love you anyway! 

But here you are today. So charming. And curly just like me! 

Frustration...

  I need a way to make $30.00 a month. 

I am so aggravated with Verizon. 

Anymore, you can either get a tiny little basic phone or a smart phone. Here's the thing, I need just a couple special features of a smart phone, ones that do not require a data package. 

But guess what? No can do. 

If you have a smart phone, you must also purchase a $30 data package. 

I need ideas of how to make $30 a month, from my bed. That does not require much memory or cognitive abilities. Or energy. 

Ideas please, my current phone is really going down hill and won't hold out much longer. I'm already 8 months past my contract renewal date thingy. 

Ridiculous data packages. Why can't they at least give me the option of a $10 one??

I never ever thought I would say this, but for the first time in my life, I want to be 14 again. But only on a weekday from 3pm-5pm.

I miss my Grandpa and Grandma so much! I miss those after school "snacks" that often turned into near meals. I miss their old house. I miss being able to stop in ANY time. Always welcome and wanted!

Right now, I am so hungry for my Grandma's cooking. Her baked chicken, potato salad, pies, Daisey-Evers, chicken noodle soup with her homemade noodles, cornflake pudding, jello salad, and oh so much more!!

I think I am going to start planning a trip to Virginia for Thanksgiving. I don't care how sick I am. I just want to be with my Grandpa and Grandma!!

I am so blessed to have grown up next door to them all my life until I moved away. The last almost 2 years have been so incredibly hard being so far away.

I love you Grandpa and Grandma!!!

Taken the morning after I returned from Guatemala.

This is kind of silly but I can smell my Grandma right now. LOL! 

1 year...

..in bed.

Let me just say, we have a special bond!

The day I noticed something wasn't right.

And today. 

I don't know what the next year holds, but I DO know Who holds the future!! 

*Blessings* 

Well, I'm back. And I don't really know what to say. Except that I'm struggling.

I'm sick.

I'm exhausted. Melting into my bed, becoming one with it, exhausted.

And I can't think.

I am positive for Mycoplasma and HHV-6. This helps explain my complete exhaustion.

I started a new detoxing IV. I think its called PTC for short, but I can't remember the true full name. I had a good herx reaction from the first one but they won't let me do that again, so we've done it without the glutathione push afterwards ever since. I'm getting them once a week and I've had 3 now I think.

My BUN is back down a point. It had been up to 6 but this month it fell back to 5. I had been hoping for it to be a 7 or 8 so that I could cut back on my amino acid IVs but that isn't going to be happening. :(

The one thing that has improved is my nausea. It is not constant anymore. I still struggle with it sometimes, but not as badly. And I have been able to eat roughly the equivalent of 1 meal a day most of the time too.

Otherwise, I'm just seriously lacking motivation. I KNOW this can and will work, its just that I'm tired of it already! I've been treating for 18 months and have been house/bed bound for a year. Its really old. Yet at the same time, I hardly remember what its like to be able to function. Properly. To a certain extent, I don't think I've ever known what thats like, but I sure had much more functionality (is that even a word??) than I do now!!

I know God has everything under control and that He has me here, in this position for a specific purpose. So I just rest in that knowledge. And know that He is the One who gives me all that I do have, it could be so much worse!!

Thank you all for your prayers and support and love! It really means a LOT to know that people are thinking about me. It is easy to feel forgotten with this isolating disease.

<3 <3 <3 <3
Lynnelle

Spoon in brain!!

The last week I've wanted to update but every time I come on to do so, my mind goes blank. I have no idea what I wanted to update about. I've been having a lot of problems with my concentration, racing thoughts and just brain fog recently. I will be thinking about totally random things, having no idea why. And the next minute I have no idea what I was thinking. Mind will be completely blank. Its in these moments that all I can think is...

...."I can't think"!! 

Its is in these moments that I used to yell, "spoon in brain!!" because it simply is like having somebody stirring your brain with a spoon. But now, I can't ever think of that one saying that I want to say at that moment. Oh well. 

The only thing I can think of to update you on is that my BUN is up to 5 now. It had been 4 for about a month or more. The normal range is 8-20 so we are getting there, slowly but surely. I think I've been on the amino acids for about 3 weeks(???) now. 

Also, my CD57 is 12 now. My last testing was probably 8-10 months ago and it had been 23 then. The CD57 is your killer cell level and it is a kind of measure of your immune system. Only the Lyme spirochetes lower the CD57. The ideal range is 200-360. They won't stop treatment until you are at least 150-200-ish. So, as you might imagine, I have a long way to go. 

*And people think I'm faking this....  (sigh) 

Rambled Scrambled...

I feel like this video is so rambly and disorganized, I'm sorry. Its just the way my brain works right now.

So this is just an update before I see my Dr. on Monday. 

Mama also comes in on Monday and Minnie leaves on Tuesday so we are staying in Portland for the night and having a "girl's night out". I really hope I hold up well enough to be able to participate and enjoy it all! 

So there you have it. A few things I missed: I've been a bit more twitchy, especially in the left side of my face and body. More nerve weirdness with muscle jerking. And some migraines on the right side of my head and face. Lots of creepy crawly nerve sensations. 

Another thing is I've been pretty sleepy this week. The middle of this last week I slept pretty much all day, that night, and half of the next day. However I have still been dealing with insomnia most of the time and sleeping much of the day.

Well, I hope you all are doing well! Thank you to all of my supporters! You guys are amazing and I really couldn't keep this up without you all!! 

I am hoping to be posting a little more in the future, I have some special guest videos and other things other than just boring updates. So stay tuned and stay well. 

And please, whatever you do, PLEASE check for ticks and educate yourself about Lyme Disease! 

<3 <3 <3

Lynnelle 

Another quick update and visitors!!

This has been a really big week and I have another big week coming up! I'm just hoping that I can make it through without overdoing it.

I've been taken off Rocephin for the weekend so for the time being, I am only running IV saline each day and probiotics and a couple other things.

I'll update you all next week when I know where we are going from here. Hopefully back on treatment. This being off treatment kind of makes me nervous, but I know it likely isn't for long so we'll see what happens.

<3 <3 <3 

Lynnelle 

June appointment update...

So I saw my Dr. on Monday the 6th. She took me off all my supplements except the probiotics, and the Grapefruit Seed Extract and then also took me off the IV Azithromycin. I'm quite bummed about that since it was targeting one of my infections that has really been flaring. But hopefully we will get it figured out soon! 

I will make a video tour of my medical supplies latter on. The one I have you can't hear anything I'm saying, so I have to remake it. And hopefully it will be better quality then too! 

Thank you to all my supporters! I appreciate all your love and prayers and support! 

And to those who have sent packages, THANK YOU so much! I am trying to get all my thank you notes written but I'm afraid I have forgotten a few of you. If I have, please forgive me. My memory is not very great right now, often I can't remember what day of the week it is or simple things like that. 

So please understand, its not a malicious thing! 

**Please, if you leave a comment on my blog and don't have a google account, let me know who you are! 

I love hearing from my readers but its disappointing to get comments that I don't know who they are from. Thank you! 

<3 <3 <3 

Lynnelle 

Super tough week...

 Man, this week has been tough, nauseating, and scary. I'm just thankful that I am ok and nothing went seriously wrong when it could have.

Thank you all so much for your love and support!! 

I ask that you please pray for my Lymie friends as well! I have so many friends who are so sick and need a miracle too! Unfortunately, I can't begin to name them all, so I won't even start. God knows when He hears our cries. Praise the Lord for that!! 

<3  <3  <3

Lynnelle 

Happy to be alive....

...more later.

I won! I Won!! I WON!!!

So a while back I entered a little drawing and guess what?? I bet you guessed right, yes, I WON!!
Ok, I know I am ridiculously happy but seriously, how many little drawings have I entered and never won a thing?! Well, to be honest, I haven't entered that many, but still, I almost never win!

This is only the second time I have ever won something. The other time was at a cooking show where I won a cute white platter filled with cookies that they made in the show.  :) ANYWHO, back to this drawing.

Jenny, over at http://baileyandme2.com/ had posted a fun little spring giveaway.

It included:
several cards
gift tags
stickers
chap stick
an adorable can covered in vintage paper
AND my favorite of all,
an awesome scarf!!

I thought I would give you a peek at a little 5 min. photo shoot my sister had with me.

Enjoy!!

Trying not to fall on my face to get this shot! 

Thank you Alisa for these lovely shoes!! They are all I wear out anymore, I LOVE them!! <3 

Thank you Minnie for everything you do for me and also for these pictures. Love you! <3 

The emotional side of living with Lyme...

So I promised a video the other day on the emotional/ mental side of dealing with a chronic illness and more particularly Lyme Disease. 

I've been really depressed lately and haven't really been motivated to do these videos but I had a moment of clear-ish brain waves so I thought I would just go ahead and do it. 

The only reason I'm putting all my thoughts and feelings and personal facts out there on the inter-webs is a hope that it will raise awareness and an understanding towards Lyme Disease.  

Part 1

Sorry, I was foggy and dealing with confusion. Had to take a bit of a break and try to get my thought put together a bit. I hope you all are able to connect it all. 

Also, if you are wondering, that is an absence seizure that I have in about the middle of the video. It was a little weird though, lots of heart palps with it. Its always so weird to see them recorded because I only thought I was having heart palps, I didn't know I was having a little seizure, that is the way the absence ones are. Just glad they aren't grand mals!! 

Part 2

Part 3

                                                 
**I can't get this video to center right. Annoying!

I don't understand why people have to question Lyme Disease so much! People don't question when somebody says they were just diagnosed with cancer. Or MS. Or says they're pregnant! Why do they have question this?? 

Please pray that this depression lifts and that all this stuff will start to clear away. 

Thank you all so much for all your love and support! I really appreciate it!! 

<3  <3  <3

Lynnelle 

Overdue Update...

Hey guys! Sorry for the lack of updates, its just been a really hard month, struggling with symptoms and stuff.

 Hopefully I will be able to do more videos this month since May is Lyme Disease Awareness month!!

Part 1...

Part 2...

Two things I did forget to mention as far as symptoms is I've been having problems with stuttering and my lisp. Today they aren't bad at all, thankfully, but some days the stuttering is ridiculous! 

Thank you all so so much for all your love and support!! 

I will be posting again soon with an update on more the emotional/mental side of living with a chronic, invisible illness, and coming to terms with it all. 

<3  <3  <3 

Short update.

Hey everybody! First of all I want to say a big HUGE Thank you to everybody who helped make my birthday so great! It has been a really tough time but, I was so full of joy amidst all the symptoms. So that was a true blessing!!

I'm sorry I haven't updated recently. I've made a couple videos but for some reason blogger won't let me upload any straight from my computer. So I don't know what I am going to have to do. Maybe I can only upload a certain amount and I've met my limit?? I don't know. If you have any ideas for me, please let me know!!

I will try to be back soon with an update, whether or not I can get the video thing figured out. Its just that typing is so much harder for me, it takes up way too much energy.

Thank you all for the prayers, love, thoughts, cards, presents, money, EVERYTHING! I appreciate it more than I can express!!

And thank God for spell check. Otherwise you wouldn't be able to even read this...   LOL!
~Lynnelle

Blessings!

Well, thank you all so very much for praying for my dear sweet friend! I can't even tell you how much the prayers and love encouraged her this last week.
 She had a magical wedding day, even a bit of relief in symptoms. Praise the Lord!! She is strong and beautiful, I really admire her for her positive attitude amidst all these hard trials!

This is Alisa and her husband, Jaime! 

I am so excited for the two you! I wish many years of love to you!!

Hope

I still have hope. I still have faith. I still believe that my dear friend will feel better for her wedding tomorrow. I ask that you all would continue to pray for her. She is an amazing girl and she has handled her illness so well for so many years. I pray that God would provide her a miracle and that this weekend would turn around for her and that she would feel well.

I ask that you continue to pray for Alisa, please!

Here is a video of her from a couple years ago. She is a singer/songwriter and has an amazing talent!

Alisa, know that you are loved and thought about very much.

 Lots and lots of love to you today and this weekend especially!  

<3  <3  <3

Watch me have my first recorded absence seizure!!

Ok, so for the symptom update. This is just kind of an over view of what has been more prominent or gotten worse this last week. It is all still very bearable, just a little more to deal with. :) 

 Now for the Babesia and Bartonella update.

ALSO!!! Watch me have an absence seizure!! Where I am fluttering my eyes and all confused, its a seizure. I can't believe I actually caught one on camera.  :P 

Thank you all so much for praying for my friend Alisa!! She really really appreciates it so much! Also, please continue to keep her in your prayers. Thank you!

P.S. I don't like hearing the fire station sirens go at 3am. Just seems like such a lonely, scary time.

Prayer Request...

I have a beautiful friend who needs a lot of prayers. I know I have such a big group of people praying for me so I thought that if everybody would pray for her this week, that maybe she could enjoy her own wedding!

Thank you guys! 

Gifty haul!!

I feel so unbelievably blessed right now!! Thank you all so much for showering your love, support, and prayers upon me!! I don't know how to give an adequate Thank You!

This first video is dedicated to Glen and Alene. Thank you guys so much for you love and support and GIFTS! You just continue to shower your love on me and I appreciate it so so much!!
God bless you for your loving, generous spirit!

I forget to specify it is indeed a Vera Bradley!! :) I love Vera Bradley!

And here is the video I made yesterday but didn't feel well enough to post.

Just a big huge THANK YOU to everybody!! 

God bless you all for your love and kindness and generosity!!

 <3  <3  <3

Quick update...

I know I had something else I wanted to update you on but I just can't remember, my head hurts too badly.

But anyway, I've been on IV therapy for a week now and I thought I would let you all know how it is going for me.  

And coming soon, a gift haul!! :) 

Thank you to everyone for you all you love, prayers, and support!

Knowing that people care and are thinking about me gives me strength to face each new day. 

Posting Comments...

**Attention! Since you are posting anonymously, you also need to write your name so I know who is commenting. Otherwise, I have no idea who you are.**

Ok, so everybody has been saying that they can't figure out how to post comments. So this is what you do.

#1. Write out your comment

#2. In the "Comment as _____" box, click on it and choose "Anonymous"

#3. Click post comment

#4. It then makes you type in the little words/letter so that it knows you are a real person.

And thats it!

I'm excited to get some feedback from you all!!

I thought I would do these videos to show you what an infusion entails.

     Part 1

...Part 2 

And there you have it!

 Now in about a month, I will be doubling the dose of this medication, Ceftriaxone, and also adding another IV med, Zithromax. And soon I will start getting a liter of fluids a day. 

Also, I will continue to go get my nutritional IVs each week.

Trying...!

So many fabulous little giveaways around right now! I am really trying to win this one....such fabulous stuff!

http://baileyandme2.com/2011/03/26/spring-giveaway/comment-page-1/#comment-2133

Wish me luck!

String Bean Studios: Crafting For Lyme: Arm Warmers Giveaway

I'm entering a contest for these super sweet arm warmers...absolutely love them!

String Bean Studios: Crafting For Lyme: Arm Warmers Giveaway: "Here comes another fabulous giveaway. This time we've got a sweet pair of handmade yellow arm warmers from Abigail Ameri of Crafting For L..."

Insomnia...

I could only sleep for an hour....

This is the best picture I have of me in a long time! Pink and green suite me well!!  ;) 

Home again home again...

OH how I love to be home! It feels so strange to feel this way though. You know, it is something that "older" people say, not your average 20 year old! However, I guess at this point, I am not your average 20 year old so what can I say? I LOVE my bed!!

So we got back around 6pm. last night. And if you know me well, you know that I insist on unpacking immediately, otherwise, it won't happen for 2 weeks. So, it took me all evening but, I unpacked all my personal stuff and cleaned up my room. I just can't stand to lay here in my room 24/7 looking at any sort of mess. It looks better and I can now rest easy!  :)

Me babbling on about the hotel mostly.

...and more babbling. 

And my special edition on IKEA.  L.o.v.e. that store!! 

OH! Also about a special little something that I got for one of my favorite people in my life! ;) 

Well, thats all for now folks. Enough already huh?!  :) 

Thank you all for your prayers and thoughts especially this week! I have felt them and feel so blessed to have such an amazing amount of support right now! 

Thank God with me that the whole PICC procedure went well and that the treatment would go smoothly!

God is so good!!! 

<3  <3  <3 

Lynnelle