Fresh Wreath Birthday Card

This weekend was better than most. My health left me very tired but I was able to help with some cleaning-which doesn't happen very much. Ken does the cleaning and says he doesn't mind. Rare quality in a guy! Thankful that he's willing to clean but can't wait for the day when I can do at least half of the work. I'm kind of a clean freak! 

Ken and I went over to mom and dad's tonight for dinner. Mom made homemade GF sesame chicken,  rice, and a cranberry apple salad with an amazing vinaigrette! She can really throw it down in the kitchen! 

Lymie Pinterest finds:

Made me laugh

Hope

Because of Jesus there is always hope! "He gives and takes away. Blessed be the name of the Lord."

Freshly Made Sketch:

I made this birthday card with inspiration from Freshly Made Sketches. I hadn't used the Wondrous Wreath set so I thought I'd try it out on this card. 

I love that this stamp set can be used for different occasions, not just Christmas! 

I'm thankful that I was able to do some stamping over the weekend (mostly to fill Etsy orders). I plan on featuring different cards from our Etsy shop on the blog! You can find our store by clicking the link at the top right of the home page. But here's the link if you want instant access :) TRC Etsy Shop.

Have a "wondrous" Monday!

*Robin

Support for You

Lyme Support:

Life has been status quo. I've shared a lot of my Lyme symptoms. Some have gotten better, some worse. And then there are those nasty ones that just stay the course and try to drag you down. There's a reason why people say "fight cancer", "fight lyme", etc... If the disease is persistent you have to be persistent. It gets tiring. Jesus is my strength. My Hope.

Today Ken and I met with a Lyme support group in Raleigh. We got mixed up on the time but two ladies stayed behind to chat. They were a real encouragement. I was overwhelmed with all of the nutritional info they shared. I've changed my diet a lot since I was diagnosed with Lyme. No gluten-no dairy-no eggs-no lamb (lamb, that's the hardest one to let go of). The way these ladies eat make me look like a junk food addict! Ahhhh. I could definitely make more changes in my diet. We'll see how it goes. Thankful that there is a support group near by...the next meeting is a lecture on juicing.

He's by my side while we fight Lyme! 

For You Card:

I walked back to my creative escape this evening and decided to make a card based on FMS 152 from Freshly Made Sketches.

This sketch is a lot like the card in my last post but I like it :)

I used the Perfectly Preserved stamp set and the A Round a Ray set, neutral chevron ribbon, some thick twine I picked up at Hobby Lobby, oval framelit, woodgrain EF, and the new Flower Pot DSP

Colors: Whisper White, Baked Brown Sugar, Garden Green, Tangelo Twist

I really enjoyed making this card-it's for some special people! 

*Robin

Rumors in the Locker Room: Lies I've Believed

This is a hard post to write. I haven't written in a while because of several different reasons: pain, confusion, holiday rush, inability to type, lies, and losing sight of the light at the end of the tunnel.

In some cases Lyme presents itself in strange ways such as tremors and mental disturbances. Mental disturbances that cause you to mix up your words when you type or speak. There have been times when I can't speak at all (which is good sometimes :).

The part about "lies" may have sounded a bit strange. The voices in my head tell me not to share. They tell me that lyme is a hidden disease that doctors don't realize and others don't need to realize it either. They tell me that life is worthless. It's a low pit that I fell into after and during the holidays. I wanted to decorate, create, send cards to everyone in my life, spend time with family, see friends, and be at all the Christmas events at church. And just about every time I attempted these amazing holiday activities I would fall on my face (sometimes literally) because I just didn't have the strength to do them.

This holiday season was a prime time for Satan's lies to start looming over me like a dark storm cloud.

Curious about the Rumor

I remember several times throughout middle school, high school and sadly, in college that I'd hear rumors about something bad another girl had supposedly done. As if we had never done anything wrong in our lives!

I remember specific incidents throughout high school were I'd here a rumor and didn't believe it so I tried to mind my own business. But because I now knew that something was up there was a curiosity as to whether or not the rumor was true, especially if the person was known for having good character. I had this voice in my head asking me "do you think it's true?" "man, that would be rough for them huh?). 

God is completely perfect and completely above the best of Christians. So I cannot make a perfect analogy but just as friends had lies told about them, I often question whether or not the lies that are thrown at me are true or false. Lies such as, "you shouldn't be writing this blog post now. It won't reach anyone". Some are more subtle and actually believable if I'm not on guard and believing Truth. I've wondered if Lyme is a waste and it's just something my family and I have to just endure.  To me the part about "just enduring Lyme" is a believable conclusion in my mind. But it's actually a lie. God doesn't give us struggles to just "endure" them. 

Sometimes I physically cannot make cards, visit with friends, FB, or go out, so I don't have the energy to write posts but sometimes I don't blog because I'm believing a lie. If I am just supposed to endure this then why should I write about it? Why should I care about helping people who are suffering? I mean, hey, I'm just poppin' my supplements, having pain attacks and gettin through it. Lies break down the reason God gives us trials. Lies make God look small when the purpose of trials is to make Him look amazingly wonderful. The ruler of all things.

When Rumors Resolve and Truth is Revealed

Truth: Lyme is not a waste. Cancer is not a waste. Deaths are not a waste. This blog is not a waste. Your life isn't a waste. Sharing what you're going through is not a waste. Being honest is not a waste. Nothing is wasted in life because God has a mysterious plan that is better than anything we could ask or think!

I'm thankful for the friends and family who have encouraged me to start blogging as I'm able.
Praying that I won't be the girl in the locker room believing or wondering about the false rumor but that I'll believe with all my heart that the rumor is a lie. I don't have to wonder. I'll just know that the Light dispels all Lies.

*Robin

Meeting Sydney and Health Update

I'm back from my unplanned blogging hiatus. Usually people go to Hawaii and can't blog. Yeah, it's not like that. :) Mom and I started crafting for Christmas and I thought, "why am I not blogging this?". Major props to the big time bloggers that are so consistent with their blog posts. I struggle just to get out of bed in the morning. Although it's tough to get things done, I was so thankful to be able to see my cousin's baby and to start a treatment plan that is based on new lyme research findings.

Meeting Baby Sydney:

Ken and I were blessed to be able to go to Lynchburg this Thanksgiving. Last year there was no way to make it because of my health. Loved seeing family, and especially my grandparents. This thanksgiving we finally got to meet my cousin's baby girl! She is such a happy baby and as you can see, a very cute and cuddly one too. Love my cousin and aunt so much. 

Four generations!

Sydney checking store specials

Aunt Mary and Sydney

New Treatment Plan:

At our last visit to Dr. P we got some new info on Lyme treatment for the 25% of Lyme patients who don't see improvement with regular treatment. I'm in that 25%. Bummer, I know. Friends and family know that I have improved since last year but haven't seen the progress we'd all hoped for by this time. 

Dr. P had just gotten back from a conference when we went to see him. I'm kind of his Guinea pig for this, I guess. I'm ok with that. I'll try anything at this point. Except skydiving. That's just not my thing. Anyway, we knew about biofilm early on in the process. Not only is the Lyme bacteria invasive and destructive, it is also intelligent. Biofilm is the protective covering the bacteria makes for itself over time. A covering that is hard to penetrate in some cases. 

I'm on a protocol that breaks down fat-soluble toxins such as biofilm, etc. There are no antibiotics involved but some fairly intense treatments. Praising the Lord for getting me through one of the toughest parts this weekend. The entire treatment plan is eight weeks long. It's too much to explain but I'm starting week 3 today and we are hopeful. I am still have violent pain attacks at least once a day that leave me exhausted and discouraged. Thank you to those who have been faithful to pray and show love. We are hoping to tear this biofilm to pieces so we can annihilate the bacteria! 

Blessings. 

*Robin* 

That Special Someone

The Kens:  

Found out a couple months ago that Joni Eareckson Tada has a husband. Thought it was kind of cool that his name is Ken as well. They've written a book that I really want to read. It's about their journey as a couple. This article, Ken and Joni, made me cry. There's a section where it talks about her Ken working full time, being exhausted, discouraged and still getting up every night to adjust Joni so she is comfortable. She has a condition that is unusual for quadriplegics that causes excruciating pain. 

What people don't see...he put my veil on me :)

What people see...

My Ken is obviously my special someone. I'm so thankful to have him. He gets up with me in the middle of the night on a regular basis to help me get comfortable or to get my cool wrap (not the chik-fila kind-ah, those are yummy) or meds. He never complains about it. He's A to the awesome!  

Our situations are on two different levels but the love of each Ken is amazing to me. That kind of love doesn't just happen. And it isn't a cake walk. And there is frustration. But because of Jesus' love they can love. 

Lyme of Late:

Lately this disease has been a heavy burden. One minute I'm in "let's do this mode" and the next I'm on the ground thinking, "there's no way I'm getting up." As all my Lyme friends know, it's up and down. I know there are other diseases like that as well. 

We've realized that babesia is my main problem right now. It's a parasite and anit-malarial drugs are the best way to kill the thing. We've tried 3 and they all send me into convulsions because the pain is so bad. The doc put me on a more gentle regimen focusing on detoxing and using a natural supplement, wormwood, to kill the babesia. The recommended dosage is 2 pills twice a day. I'm taking one pill every 3 days and still going into convulsions. Oh boy! Please pray. 

*Robin* 

New Treatment Plan

Change of Plans:

I had my last check up about 2 weeks ago. Had a seizure in the nurse's office before seeing the doctor. He came in the room and saw the seizure in real life and because this has been going on for so long he decided to change my treatment plan. Most of Dr. P's neurological Lyme patients follow a protocol of 2 weeks on antibiotics and 1 week off. Each round should get easier and less painful for the patient. I wasn't getting better.  

Currently I'm doing 2 weeks on antibiotics, 2 weeks off. We have seen a decrease in seizures. Although they do happen. I seem to get them when I'm around people, like at the clinic or when people come over. I hate that because the "old Robin" loved being around people! I want people to know that I care about them and want to talk, but my nervous system can't always handle it. I even have seizures on occasion when I'm talking to Ken and Mom or Dad. It's crazy. Overall we've seen improvements over the last 2 weeks. I'm now on my 2 weeks off. We are hopeful about this new treatment plan. 

High Hopes: 

I always get my hopes up. I think that the weeks off will be better. Day one has been difficult but I managed to get up for about an hour or so to take pictures for our Etsy shop. Oh the things I took for granted. It's amazing how making 1 card makes me smile so much. It's the little thing that I treasure now because of the situation. I never thought life would be this way. I didn't know that a person could feel razor blades and knives in their back. So many people in the world are suffering. They are feeling razor blades as I am right now. I don't mean to complain about the pain (although I often have an unthankful heart). I talk about the pain because I want to get the word out about Lyme and how it affects people's lives.

Many friends encourage me through email, FB or text and it means so much. 

Here's my main support group :) 

My supportive husband. Thankful for a faithful man

Still like to goof around

Mom's side of the fam at Teresa and Danny's wedding. They are so loving. 

Shine brightly and pray for Lyme patients around the world!

-Robin 

One Year Closer

Anniversary #1:

Ken and I celebrated our first anniversary this past Saturday! I had no clue what he had in store for me that day. 

The last year has been difficult to say the least. As a newlywed wife I haven't been able to be the Susie home-maker that my mom, grandma, great grandma (you get the picture) taught me to be. Sometimes I feel like I'm missing out on taking a meal out of the oven and popping one of my heels up in the air as I admire my deliciousness...or my disaster! I've struggled with many things that we can't do as a couple but life is not all about doing. Some seasons are about being, resting, and slowing down. Ken has helped me so much with this whole concept. This anniversary reassured me that he meant, "in sickness and in health."

Highlights of the Day: 

-Flowers: real and origami 

-GF blueberry pancakes and bacon (his first attempt at pancakes and they were good!)

-His co-worker made a huge tray of chocolate covered strawberries for us. So he surprised me with those

-An indoor picnic with S-bucks green tea lemonade of course

-He ordered a steak dinner from Mom and Dad's restaurant and had them bring it over as a surprise 

-He told me not to come out of the bedroom until he said. In the mean time I was struggling to get ready. We wanted it to be a special night. Dress up a little. He told me it was fine if I were in sweats but I really wanted to try. So it was time to go out...

-I walked out to roses scattered everywhere, candles spread out around the room, jazz piano music playing in the background, a beautifully set table and a tall handsome man

Lyme alert: (had a seizure 10 minutes into dinner. Almost fell out of my chair so Ken took me to the living room where I could lay on the floor-hard surfaces help the pain for some reason. I was so bummed because he worked so hard and my stupid body was just breaking. This is what Lyme patients deal with all the time-especially those with neuro Lyme.) 

Ready for our romantic dinner to begin! 

Right after the seizure that interrupted dinner

- Laid on the floor and took pictures that blinded us! 

-After dinner he asked me to take off my socks. He washed my feet and told me he wanted to be like Jesus and act like he is washing my feet (serving me) everyday-I was crying as you can imagine

-Then there was a poem he had written called, "Your Smile"-I'll cherish it forever

-Last, he gave me an infinity ring! I'd been wanting one for awhile. 

Most loving man in the world

Yay!

The day was wonderful despite the disease. God gave me an amazing an amazing husband!  He made me a movie with our song and pictures...trying to get it downloaded to FB.  It's probably my favorite thing he did. 

We also bought a King size memory foam mattress that we had saved for! It's on it's way soon. We'll both be able to fit comfortably on the bed now-he is 6'6"!! Ken bought me a dress and a new fleece too. Ah, it felt like Christmas and I felt so loved. If anyone in the Raleigh area needs a Queen size mattress we have one for sale with box spring, frame and a neutral bedskirt. Only a year old.

I've added "follow me by e-mail" at the top right hand corner of the blog. Just add your e-mail and you'll get updates about what's going on in our Rounded Corner! 

*Robin 

Life Changer Part 2: Honduran Adventure

A Little Update First: 

I'm sitting here watching my Vitamin C IV drip-drop down the tube into my vein and sipping on my iced drink. I usually do a C IV every weekend and it makes me really thirsty so Ken gets me an iced tea of some kind from S-bucks as a treat!  My new favorite is the iced peach green tea lemonade unsweetened (shew what a mouth full!). The C bag helps flush toxins and die off out of the body and usually makes me feel very sick during the IV but better the next day. 

Our follow up visit is tomorrow and we'll find out what to do for the next 6 weeks or so. Still in loads of pain and have the seizures but every now and then I feel like we're making progress. FB messages and emails are hard to keep up with because I have to process and form answers which, for a Lyme brain is very difficult. Still love y'all...even if it takes a year to get back to you ;)

Honduras: 

The summer of 2006 I went on a mission trip to Honduras with the youth group from our church. This was the summer before senior year of HS. I'm so thankful for the opportunity to go on this trip but ever since that summer I've had health problems. Throughout this whole process we've tried to make sense of all that has happened. God only knows what really happened in my body but this is what we believe went down in Honduras:

-Went swimming in a pretty dirty waterfall (as a teenager you don't care) Jumping of the side of the waterfall was fun. 

-After swimming we changed into dry clothes for the ride back

-Noticed 3 leeches on my stomach 

-That evening we had a youth activity with the local kids

-Felt incredibly sick while cutting out flannel graphs for the event that evening

-The activity was at the missionary's home and I ended up sleeping inside the whole time because I could barely lift my head. I was so discouraged and knew something was very wrong. 

-Two days later we headed home. 

-I had a rash on my face and my eyes burned like crazy but there was nothing I could do. 

-I usually never got sick so this was a rude awakening.

We believe I contracted something from the leeches or through the water. Possibly bartonella, parasites, babesia, mold, fungus, etc. We just know that my health has steadily declined since that trip. We don't believe I contracted Lyme there. I will explain our theory on that in Part 3. 

Just Around the Corner:

God allowed me to go on this trip and knew what would happen to my body. Sometimes I think, "what if I didn't go? my life would be so much easier now". Maybe that's true but easier isn't always better. That statement sounds good and is easy to type but hard to believe when you feel hopeless-when you find yourself in circumstances you can't control. We are all very weary with the treatment protocol. We are thankful for answers but overwhelmed by the complexity and severity of the disease. 

I am hoping for a day when we look back at the pain and see the purpose and the good in it. I definitely see the world and people in a new way because of this experience. When people are in pain I am deeply burdened. When I am able to walk outside I'm extremely thankful. 

There's light waiting just around the corner. Don't give up. 

*Robin 

Mr. Herxheimer

I thought I'd write this post while I was actually "herxing". For the Lymies out there you know that it probably will take me 2, maybe 3 hours to write this! 

As I mentioned yesterday, I'm back on IV antibiotics as well as oral antibiotics. I'm on for two weeks, off for one then back on for 2 weeks, off for one. This method is called pulsing. When I start on a-bombs (antibiotics) someone else always comes along, Mr. Herxheimer. 

Meeting Mr. Herxheimer

Lyme disease has more crazy, painful symptoms than this post has time for explaining. Once the antibiotics start to kill the bacteria in the body, Mr. Herxheimer makes his entrance. Here's how he works. "Herxing is believed to occur when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. This provokes a sudden and exaggerated inflammatory response." (Chronic Illness Recovery Education) So basically all the crazy, painful symptoms that you previously had are intensified for a while because the toxins have nothing to do and nowhere to go so they take it out on you! Here's a pic of when I came out of a routine herxing episode: 

Thankful for a bed and my chevron :)

No one sees these moments but my family and some friends, and now you. I share this because I want people to know about chronic Lyme issues and I want to encourage other Lyme sufferers that they're not alone in the battle. 

"I lift my eyes to the hills. Where does my help come from? My help comes from the Lord, the Maker of heaven and earth." This is a verse that has helped me get up after being curled up in a ball of pain from herxing. There is hope! 

*Robin* 

Traveling with Lyme Disease 101

As most  Lyme patients know, traveling is extremely difficult. You have the meds, accessories (wheelchair, cane, shower sleeve, etc.), the frustration of having to ask everyone to help you with just about everything. Then, once you reach your destination you're wiped out and just wanna stay inside. If you decide to travel, here are a few tips:

-Try to plan your vacations on your off weeks of antibiotics...if you are on that schedule
-Get as much rest before the trip as you can
-Let people help you! (So hard to do. But don't steal their opportunity to show love to you)
-Start the packing process a few days before you leave
-Avoid traveling long distances if possible
-Avoid traveling to primitive locations. Let's not catch another disease!
-Simplify your outfits and bring plenty of comfy clothes
-Take as many pictures as you can! The good memories are few and far between during Lyme treatment so savor the good ones...even if you're in pain

I'm speaking as a young married woman with no kids so I'm sure they're are more things to remember when traveling with kids. Please share your insight about how you plan your travels with Lyme and children! 

Our Weekend Getaway

Ken (my amazing hubby) and I are blessed to live 5 minutes away from my parents. So when they're gone we take off for a vacation....to Mom and Dad's :) We love taking care of their/dog, Snickers! It's nice to have a change of scenery and to create in Mom's stampin studio! 

View from our resort

Started back on antibiotics this week. That involves 3 oral antibiotics 2 times a day plus 3 IV bags on most days. This treatment puts tremendous strain on the body. When I'm in the heat of it I often think about the other Lymies suffering and the loneliness they're feeling too. More on Lyme education later. Until next time! 

*Robin*