Thursday, December 12, 2013

Sending or Selling?

Not Strictly for Etsy: 

Most of the time mom and I make cards strictly for our Etsy shop (check out the link to our shop at the top right corner of the blog and follow us here on TRC's blog via Google Friends Connect)!

Well, recently there have been several birthdays and a few engagement, baby, and wedding cards that I've wanted to make. But I have a hard time keeping up with everyday tasks, like getting to the coffee maker in the morning.  Ahh, that's probably the most important part of the day. Making cards, decorating, playing the piano and reading the Bible and articles has been very therapeutic. I'm seeing some progress with this new treatment plan! So, I'm able to read and write a lot better. Hallelujah!

I mentioned making cards earlier and that it's a challenge sometimes. Well, here are two of the cards I made that weren't sold but sent. These cards can be replicated if you'd like. Just go to our Etsy shop and send a custom order request. Leave a comment on this post if you have questions. 

For Grandpa Roop's Birthday: 

For this card I used the Cycle Celebration stamp set. All of our cards are made with fabulous products from Stampin Up! I just love this bicycle! 

For Courtney and Corey's Wedding Shower:

This card was soooo fun to make! I just love this music paper from Stampin Up! and the dahlia embellishments AND the big bow (so girly:). The sentiments are from the One in a Million stamp set. 

Our family has been friends with the Fraziers for as long as I can remember. Kristin and I are the same age and we're pretty tight :) Courtney helped me through a really rough time with my health when we were still in Greenville. So excited to go back to the Gassaway Mansion in January to see them get married! Mom and I couldn't make it to Courtney's scheduled shower but Ken and I went over to meet Corey (Courtney's fiancé) and Saddy (Justin's wife)

Pics from our visit!

Shine bright, 

Thursday, December 5, 2013

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! 


Saturday, November 16, 2013

A Verse Ministry and Paper Tutorials

Over the years I've accumulated tons of stationary and office supplies. Notecards, post-it notes, binders, folders, pens, gel pens (oh my word, I bought the 50 pack of those when they were really "in"), I could go on and on about the paper and ink products I have on hand now. The way I'm currently using my extra stationary is by sending notecards with verses on them and journaling who I send them to in order to stay organized.

1. Choose how you'd like to use your extra stationary

Since I can't get out much because of pain, I'm currently using my extra stationary to mail verse cards. *Side note-If you are bedridden or have to stay inside because of an illness you can still glorify God, often in unique ways. Don't give up the fight and don't forget about others.*. I use notecards that have piled up over the years. Just hope I don't accidentally send one with a study question on the back! I used notecards a lot during school.

2. Organize your stationary according to what you need for your project 

For me this is the hardest step. I used to be more of a free spirit before the illness hit me then I got super OCD. So now there's this part of me that wants everything to be in it's place and another part that wants an organized mess (aka organized stacks).

Materials for verse ministry:

1. Notecards
2. Pens
3. Envelopes
4. A Bible
5. Postage stamps
6. Binder or Notebook to track which verse you sent to which people, what day it was and their address.
7. Address book (if you have one-still need to compile my addresses!)
8. Post it notes (I use these on the first verse card I send just to let people know what I'm doing. That way if they continue receiving verses they'll know why). You don't have to do this step.

Even if everything isn't perfectly organized, make a special spot/container for your supplies. Decorate the notebooks if you want. Make things fun :)

If you're interested in the verse ministry, you can make a card to send it in or send only the notecard. If you want to send with a card, check out our Etsy shop for some cards that are sure to encourage as well! TRC Etsy Shop

Project Ideas

-Learn to make origami figures Origami Crane Tutorial

-Use notecards as learning cards, just like you may have done in school. Never stop learning!
-Donate excess school supplies to kids who need them
-Make greeting cards
-Make a home organization binder
-Decorate unused notebooks or notepads and give as gifts (Check out these sites for ideas and tutorials: Tutorial for Covered Notebooks Tutorial for Notepad Toppers )

Have fun creating :)


Sunday, November 10, 2013

Customers and Cookies

Customer Acquisition 

No, we did not open a cookie shop! But a couple weeks ago we were contacted by a bakery based out of Massachusetts  Check out their bakery and our card fronts on their cookie boxes here -----> Bellavella Cookies The lady from Bellavella Cookies has been great. We get orders from the bakery on a consistent basis, almost every week! We are thankful for this opportunity that came to us. Praise the Lord! I can't work fast anymore but I still try to work hard. That's what I'm learning, it takes hard work, patience and diligence to get results. So keep at it if you have a small business or an Etsy shop going! 

Customer Retention

Anyone who owns a business knows that customer satisfaction is a key component to obtaining repeat customers. We use Etsy's business platform and they offer tools to keep customers happy. What I've realized over the past few months is that the more items you post to your shop, the more interest you get from potential customers. At first I was happy that we had a shop and some success on Mother's Day and Father's Day this year. However, we knew most of the people who bought from our shop. We're thankful they came to our shop! If you're one of our customers, just know that you rock! Our goal has been to keep our customers interested and gain customers by figuring out what people like and stocking the store with those items. Thankfully we have people from all over the country that buy from us now. I haven't written any posts that are serious or about business but I really enjoy the topic. Please leave comments on how you keep your customers happy. If you're one of our customers or interested in our products let us know what you like! 

This post is a result of my Dad encouraging me to have the link to our shop visible. Pretty good idea I'd say. :) So here is the link to our shop, The Rounded Corner Shop. I'll also be posting the link on the homepage of the blog so it's easy to find. 

Lyme treatments are going slow. Not much progress but not much regression either. Lots of raw pain and fatigue. We go to see the doctor soon. Even though it is miserable, I hope we get back on an antibiotic regime. Thanks to all who have been praying for us. This past Thursday was the 1 year anniversary of my diagnosis. It was very emotional. Lots of flashbacks but I'm thankful to God who is my sustainer! The light is at the end of the tunnel shine bright and eat a cookie while you're Rounding the Corner to get there! 


Thursday, October 31, 2013

Decorating on a Dime

Yes, I have Lyme disease. That means I can't hold a job so that also means that there isn't a lot of excess at the end of the month from Ken's paycheck. Ever since I could shop, which was when I was about 3 years old, I liked finding a good deal. Since I've gotten old enough to have an apartment it's opened up a whole new aisle at TjMaxx! The decor aisles! 

I don't want to waste money or my Lyme. I want to do as much as I can with the circumstances that God's given me. It's taken a lot of time to get things organized and decorated how I'd like them at our apartment. Gotta start somewhere though so we've been working little by little to make our house a home. I'm definitely no expert at budget decorating but do have a few tips to share.

Decorating on a Budget:

1. Look for what you have on hand FIRST! 

This is a step that I often forget. Over the years we accumulate stuff. Lots and lots of stuff. Look for picture frames, ribbon, fabric, candles, yarn, etc...

Look at my organized mess! I found some burlap ribbon in this box and it was perfect for the mason jars I wanted to use. I also had some of those rocks used for faux flower arrangements, some candles, and a figurine that my grandma gave us for our anniversary that works well on our "ledge". Keep reading to see the finished "budget project." :)

2. Borrow and share items from friends and family

I know everyone's situation is different but in some cases borrowing, sharing, and exchanging works. I'm borrowing the mason jars from my mom. I'm also borrowing some of the candles from her and fabric of course. My fabric container won't fit in our apartment so I store it there. You should see HER fabric collection! It over-flowith! 

I've seen fabric covered books on Pinterest so I thought I'd cover some of my books with pretty fabric! Pick different size books. I used 3 books with the biggest on the bottom and made a tower. 

Make sure your fabrics are large enough to wrap your books. I wrapped mine like a present. Just use some tape. That way you can re-read the book and re-use the fabric too! 

WALA! A fabric covered book tower that didn't cost a dime with a mason jar, rocks, ribbon and candles that didn't cost anything either. Pretty awesome huh?! Just get creative and go on Pinterest ;)

3. Buy pieces that can be used in other seasons. I like to get a "statement" piece. 

My statement piece for this project was a cool rustic bike ($12.99 from BigLots). I also bought some garland ($7.99 also from BigLots too) to use for many years to come. This is the first season I've been able to decorate so I'm gathering pieces for the future. Getting started is the hard part...especially with Lyme. But when the project is finished it makes you smile (well it does that to me). I just love nesting! The project cost $21.00 in total. What are your ideas for budget decorating? Do you use everything you have on hand? 

This project took me about a week to complete. I almost didn't try because it would take too long and too much energy to decorate. But I love decorating. So, I decided to take it at my Lyme pace. Don't waste your Lyme! Don't waste your money and definitely not your life!


Tuesday, October 22, 2013

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. 


Saturday, October 12, 2013

Run Down?

Relax and Benefit: 

In our culture relaxation is something most people don't explore. Many think that the word means spending big bucks on a Swedish massage. Before Lyme disease I didn't relax much.  But throughout this journey I'm realizing how important it is to chill out. 

Many articles and professionals say that stress can initiate or exacerbate pain. So it is very important, especially for those with chronic illnesses to simmer down. Relaxation is important to those who aren't in pain as well! Here are 3 relaxation practices that have been helpful to me. Of course there are many others. 

1. Listen to music and/or sing-My favorite stations on Pandora are Christian Contemp but when I want to relax I like "The Piano Guys Radio", "Classical Solo Piano", and "Oscar Peterson Radio" Oscar brings jazz piano music that just takes my mind off the disease and onto the musicianship. 

2. Not much into music? Take a baking soda and Epson salt bath with a candle of your choice burning works wonders on the nervous system. I've read that 1 cup of baking soda and 1 cup of epson salt is best but I usually just sprinkle some in (I don't like measurements). Maybe listen to your favorite music while soaking and try to think of nothing-that is hard! 

3. Do some yoga-Yoga is good for relaxation but can be pretty intense. I found this YouTube clip of a yoga instructor who does a relaxation technique for the entire body. When I first did the video I felt weird but if you give it a chance, it does help relieve stress. 

Here's the link to Ester's videoRelaxation
Her voice is soothing to listen to as well. So, enjoy and relax. 

Do you have relaxation ideas? What music do you find relaxing? 


Wednesday, October 9, 2013

Our Etsy Shop

The Rounded Corner! 

Yep, that's the name of our shop. The blog evolved from the shop and merges our passion for creating and for spreading the word about Lyme disease. If it weren't for Lyme we probably wouldn't have started an Etsy card shop.  I have a B.S. in Business with a Marketing emphasis and was ready to get my feet wet in the corporate world. But I can't hold a FT job so my mom and I decided to make lemonade!  

We started our Etsy shop in April 2013: Shop Here Mom does most of the production right now and does fabulous work! You have to check out the cards. You see the link. I know you see it! :) I make some of the cards and maintain the shop. 

Our Styles

Mom's Creation

Robin's Creation

Christmas is Coming

Currently for Sale!

Christmas gift bags coming soon! 

Christmas tags coming soon!

Our Products. Your Rewards.

Most all of our products are made with Stampin Up! materials. They offer a wide variety of tools, embellishments and papers that are just amazing! The images on paper are hand stamped, not printed. The products are labor intensive but extremely fun to make and sell!  

If you're reading this post receive 15% off your order from now until Christmas! Use coupon code TRCBLOG15 at checkout. Our site only has a button for Paypal but if you click on it you can use your credit card. No need for a Paypal account. 

Free Shipping on our Breast Cancer Hope Cards-no coupon code needed. Encourage the fighters! 



Monday, October 7, 2013

It is in Your Head!

All Tests Normal: 

If you have health problems and all tests come back normal it's easy to leave the doctor's office feeling a crazy discouraged freak (at least that's what went through my head time after time). After several years of tests (incorrect lyme tests included) I began to wonder, "is it all in my head?" Then I'd feel a sharp pain down my back or a shooting pain down my arm. Very very real to me even though it was invisible to others. I began to wonder what other people thought. If my friends and family believed me. I had no proof that something was wrong until my body shut down...almost completely. 

I always found it humorous when a doctor would ask me, "So, are you feeling anxious?" I'd say, "well, yeah. anxious to find out what's wrong." In my head I was thinking why wouldn't I be anxious after being in incredible, invisible pain for years? Then the doctor would quickly reach for his samples of antidepressants and send me on my way. *Side note* With my illness I avoid antidepressants like the plague now. The withdrawals are absolutely terrible and doctors are very willing to up your dosage any time you want. Not a fan. 

It Actually is in my Head... 

Because my head holds my brain-yeah, a no brainer, I know. As we've learned more about neurological Lyme, we joke that some of the problems are LITERALLY in my head. The brain controls most every part of the body. My brain is definitely different than it was 7 years ago. It's infected with bacteria so I act totally different and feel outside of my own body. It's a very strange and often discouraging feeling. 

Saw a great website from a pic mom posted on FB. For those wondering if they have persistent Lyme or want peace of mind or brain :), here's some info that might help. Check out the site: BrainHealth The site lists early, mid and late symptoms of Lyme as well. 

Dr. Stoller, Chief of Hyperbaric Medicine for the Amen Clinics has been working with Lyme brain since the late 1990s. He says, “Lyme is often a serious, chronic illness that the medical community at large has misunderstood at best, and at worse unacknowledged”. How can doctors treat an illness if they don’t believe it exists? They can’t, which is why far too many people have been suffering with Lyme brain for far too long.

  • Common Neuropsychological Issues From Lyme Disease:
    • Impaired attention, focus, concentration, judgment and impulse control.
    • Impaired memory and speech functions.
    • Disorganization and getting lost.
    • Poor problem-solving and decision-making abilities.
    • Slower mental processing speed.
    • Symptoms similar to dementia and Alzheimer’s.
    70% of those afflicted with Lyme disease report changes in their thinking
    such as memory loss and reduced mental sharpness.
    I'm off all treatment now. My body couldn't handle it for now. I'll share more later. Thought this technical info might help someone. I have to remember that even though my brain is infected and I have neuro-emotional issues that I can't explain, God controls the brain. He knows every time my brain will bleep out. It's frustrating but encouraging to know that when I'm in my darkest moments, He understands what's going on in this hard head of mine.

Tuesday, September 24, 2013

Life Changer Part 3: Something's Not Right

I mentioned in my last "Life Changer" post (In July!) that I'd explain why we think I contracted something in Honduras. Only God knows what really happened. But in hindsight, knowing the issues I have now, it's likely that my health issues began in Honduras. 

That Was Like, So 7 Years Ago:

Let's go back to 2006-2007.  (Yes, I still say stupid things like the heading when joking around with Ken but it was more frequent in the glory days of high school :) In 2006 we had no idea that something was seriously wrong but the signs were there. I think my immune system was keeping the infections, bacterias, etc at bay until basketball season. I had really bad back and neck pain, but that kind of comes with the turf. I saw a chiropractor regularly throughout most of my senior year of high school (2006-2007). During basketball season's senior night I was pretty sick but didn't care so kept going (I remember missing maybe 2 days of school before I got to college). In the summer of 2007 my pain continued to get worse and our chiropractor said he believed it wasn't due to a structural problem and that seeing him was not really what I needed. I appreciate his honesty. He was right! 

So many memories...

Beginning of the Ceiling: 

One Sunday in July 2007 we were having a special get together after church with fireworks and ice-cream. Ice Cream!!! Anyway, as I was sitting in the service I felt this sharp pain in my lower back and felt tears welling up in my eyes. I was thinking, "something is way wrong" and decided to leave. I drove home and ran to my bed and screamed because the pain was so bad. That's the first time I remember staring at the ceiling and crying out to God. Lots of questions but somehow lots of praise because of what Jesus did for me. When God takes away your health somehow all other things in life eventually become praise items (it gets harder and harder to praise the more intense the treatments get). I'll never forget that evening. Didn't realize there would be SO many more days in bed staring at the ceiling. Sometimes praising. Sometimes asking "why" all day. Sometimes just staring. 

List of symptoms that I had not had previous to 2006-2007: (healthy as a horse from '89-'05)

-Neck Pain
-Back Pain
-Concentration Problems
-Decision Making Problems
-Severe Mood Swings

I know I'm going slow with these posts. I just pray that some detail helps someone on their medical journey. Been hearing about more and more people looking for medical help but find competent physicians lacking. Here is some advice that the first doctor gave, "just don't anything white". In other posts you'll hear more interesting comments from doctors.

I'm thankful we'll be going to a competent doctor tomorrow! Please pray. The disease is so volatile that we never know what the next treatment plan will be. 


Wednesday, September 18, 2013

Weekend Getaway

The Days We've All Been Waiting for:

Weekends are great, right?! For Ken and I weekends are mostly spent indoors. Ken takes on the frightening aisle of the grocery stores while I do a lot of sleeping (what's new?). We both try to clean, but I can do very little so he does most of it. Ever since I got sick I've had a hard time with allergies. Dirt and dust drive me crazy, and can even cause pain. Once we've gotten the apartment "Lymie livable" we usually hang out together and sometimes laugh until we're almost in we were tonight! To most young couples our life might sound incredibly boring and like we're already wearing dentures. I do feel old at times! And I might just need those dentures earlier than later because of teeth issues. But it's all good. We're growing closer during this time and Ken's become quite the cleaner. :) Thankful for him. We try to keep taking it one day at a time. 

A Great Time with Family:

This past weekend we traveled to Lynchburg to see my grandparents and some aunts and uncles. We had a wonderful time. As long as I slept in past noon my pain was minimal.  I only had one pain attack. Getting to see my grandparents was SO special! Good cooking, smiles, tender hugs, and great conversation. Here are some pics from the weekend: 

Wish we had gotten some with Aunt Mary and Uncle David too.

Trip wouldn't be complete without Snickers
Love my grandparents and hate that we had to leave. The trip was just the right amount of time to be away. It pushed my body some but didn't make me collapse. (More on traveling with Lyme disease is written on my very first blog post) Since being off antibiotics, we're just now getting to the point where we feel like we can breathe. My body is healing but the bacteria will keep spreading the longer I'm off. Doctor's appointment on the 24th. 

Love my family. 


Wednesday, September 11, 2013

What You See...


Is NOT what you always get. 

What Do You See? 

This is my friend Stefanie. I met her through another friend, Kara, who has Bartonella. Which is another painful condition that I struggle with too. We've all been in unimaginable pain for years. Do you see her pain? I don't see it in this picture. But this sweet, beautiful girl is dealing with pain that you probably can't imagine. With lots of illnesses  there are visible signs that you are sick. With Lyme, especially before you're diagnosed, the disease is invisible. And sadly, it takes SO long to get the right diagnosis. Pray for us please. Pray for good friends, real friends who understand and don't judge. Friends that try to "get" how Lyme affects making commitments, going shopping, going to church etc. Thankful for those type of friends in my life! You know who you are. :)  

"But you don't look sick."
One of the worst things to say to people who are hurting.  

Purpose in the Invisible Pain:

One of the hardest things throughout my journey with Lyme has been the fact that most of the time, especially when I was in college, I looked like a perfectly normal girl. I'm naturally a people person but slowly went into a shell. I felt like no one understood. Mom was always there to talk to at night but my days were filled with dragging myself to class, talking to the few friends who were understanding, and going to Barnes and Noble and hiding in the health aisle reading books on different diseases as tears rolled down my face while I tried to figure out which one I had. 

"But you finished college. Why aren't you working a job?"
Some other questions you might wanna avoid.

Before I got sick I was busy having a good time. (Good times are awesome btw! :D) I wasn't paying attention to people who could be in physical pain. I never felt pain other than stubbing my toe so I wasn't sensitive to it until 2006. I'm thankful for the opportunity to relate to people in pain. I hope one day I'll be able to say that I'm sincerely thankful for my Lyme. Not there yet but I know there is a purpose in pain. It comes down to faith-believing without seeing. I guess I'll wrap up this post with a line from a song that just came to mind. 

"Give me Your eyes for the broken hearted. Give me Your eyes so I can see. Everything that I've been missin' Give me Your love for humanity." -Brandon Heath

Keep your eyes open.

Thursday, September 5, 2013

Coffee Table Revamp

Finally a post about something really fun: decorating! Really don't know what my personal style is but I like pretty things. Pinterest has revolutionized my world (as it has for many women...and a handful of men I guess???). I was able to get out yesterday so Mom took me to T.J.Maxx! I was able to do one little DIY project with my purchase. 

Here's what I got: 

-One flower arrangement-wasn't sure about the green but I really like it now
-Three pillar candles 
-Copper plated tray it's really heavy and my favorite piece! 

I obviously want to keep my favorite piece looking mahh-valous. So, I needed to put something under the candles but didn't see anything that I liked at the store AND I wanted to save a buck. So here's what I used for the bottom:

-Brown felt
-2 sided tape (My aunt graciously gave me some of this-don't know if she remembers). 
-Sizzix Big Kick cutter (you can purchase items like this cutter and circle dies through my Mom's blog: I Stamp, I Sew
-Sizzix Circle cutting-dies

1. I took a 8"x12" piece of the felt and cut it in half so I could send it through the Big Kick 
2. Cut my circles out. Had a perfect match for the orange candles but had to cut off some of the excess felt around the cream one-that didn't look so great but no one will see it :)  
3. Used my two-sided tape to attach the felt to the bottom of the candles 


4. Arranged them on the tray with the flowers and enjoyed the atmosphere-Ken liked it too. He's so supportive!
If I only had a before picture of the table. It was a bowl of candy haha. Like this a lot better!

Although Lyme has so much pain involved I'm thankful for the little windows of time where the fun and beautiful things in life have a stronger presence than the pain. Today was very hard. I was sore from the hour that we were out yesterday. I walked with my cane so, I guess no pain, no gain. Today I tried to rest but it was difficult. 

Thankful for some more progress with the apartment. We're on a 5 year decorating plan. :) 


Wednesday, September 4, 2013

"Run Your Race"

Run the Amazing Race

Hey y'all. It's been a while since the last update. I haven't really felt up to doing anything. That includes FB, blogging, reading, Pinterest-ing (although that is my favorite zone-out therapy), and on somedays not even running! Actually typing "run" terrifies me. Will these legs ever get their muscle mass back? Hope so. Not being able to exercise, brain or body, has been one of the most challenging things throughout this process. It's not just physical. Your mind is attacked too. If I were only this?, if I could only do that?, if I could wash my face?'s like that some days. People tell me, "don't think like that." And they're right, those aren't the best thoughts (except washing my face is something I think I should strive for daily-gotta get that commercial contract with Clean and Clear nailed down). So I shouldn't be thinking those thoughts but I do think them. So please pray.

It's good to here what not to do but a lot of times, especially with someone who is critically ill, it's better to love on them by praying and by actions of love-not just by rebuking them. I've seen my Mom love me in action and in emotional support. It lifts a burden off my chest, similar to how Jesus lifts burdens off of us. Thankful for those people who lovingly lift burdens off of me and encourage me to cast my burdens on the Lord. I'm also thankful for the people who have loved for many years and tell me what's up (Dad!). I believe that reality checks are good at the right time and by the right people in your life. Dad helps me a lot... "get my head in the game", "giving up isn't an option", "you finished college with this disease", "run your race"...I always told Dad I wanted to go on the show "The Amazing Race" together. We'd probably kill each other with are hard heads haha. Only kidding. We didn't go on "The Amazing Race" but we are running ours right now. 

Running shoes on! 

Neurology Appointment Brief: 

This past week we made our way out toward Cary to Dr. Glenn's office. I've been having more aggressive seizures with full body involvement. Dr. P's office scheduled our visit before the violent seizures because a full neuro work up needed to be done. I had all the major tests done within the last year except an EEG and a spinal tap. I will be getting the EEG asap and the spinal tap when the seizures are under control. 

There was a specific anti-malarial drug that I took for three days in the middle of my two weeks off of antibiotics per doctors orders. We believe this drug, along with the toxic residue from antibiotics, caused the intense seizures.

We were supposed to start on the antibiotics today but was told to wait because of what the body had been through and also to get calmed down for the spinal tap. The doctor believes that my reaction to the anti-malarial drug indicates a strong presence of Babesia. Babesiosis is a malaria-like parasite that is less fatal than malaria, although people with certain conditions are at risk. (More on Babesiosis). I don't have those certain conditions and am thankful. Lyme disease is much more complex and has many other critters associated with it than I realized. Please pray for our family and the doctor as we deal with the Lyme, parasites and infections. Hopefully these next three weeks will be a healing time with no additional issues. And maybe some fun times out on the town with my love! As I asked Mom growing up, "'Maybe' doesn't mean 'no', does it?" :) 

Love to all, 

Wednesday, August 28, 2013

Happy Belated Birthday Ken!

Upcoming Neurologist Appointment: 

Seizures have been a hallmark of Lyme life so far. This makes it extremely difficult to connect with people and keep up with thank you notes, birthdays, FB messages, friends, etc...I'm actually more prone to have a seizure if I'm interacting with people or doing things that cause me to think deeply-yes, very annoying. Recently, I guess within the last 5 days, I've been having violent seizures. My whole body convulses and my head is shaking uncontrollably. I had been doing better then, WHAM! Major seizures. Thankfully we go to the neurologist tomorrow. She believes in Lyme and from what I've heard from the nurse she's going to order a spinal tap and other tests to see if there are any other underlying conditions. 

Yesterday was a Special Day: 

Ken's birthday was yesterday! I'm so thankful for the day he was born and for the way his parents raised him. He has the most compassionate, humble spirit I've ever experienced. I was feeling so guilty that I didn't have a card made for him. I gave him a tie a while back for Chris and Tara's wedding but it's not the same as opening a present ON your birthday ya know. He wasn't expecting anything. I had 7 seizures yesterday. He's so easy going and understanding but it drives me nuts that I can't do more for him. This is where we are right now and it's time to "be" not "do". 

Ken's youngest siblings came to visit on their way back to Bob Jones. It was good to see Abby and Robert! They have such a sweet spirit and Robert always keeps us laughing. We had a nice dinner on Monday evening at Mom and Dad's. Robert helped Dad carry out our old fireplace/stove part. I see them down there lugging it out. Robert has flip flops on because dad just called him down randomly haha. Was praying for Robert's toes! No cuts or bruises. They hauled it out and Mom will be getting gas logs soon :) 
The birthday man! (Super handsome!)

Ken's parents sent us a beautiful gifts for our anniversary and for Ken's birthday. I received an African purse so I'll be stylin Lion King in the future. Mom and Dad gave Ken a nice gift for new clothes. Don't think he gets as excited about that as I do. :) We also have three kinds of brownies in the apartment! One is GF and my fav! Ken's one happy man. Thanks to both moms and Mrs. Boring-He loves your brownies btw...nice treat for him! 

You are SO loved Ken! 

Tuesday, August 20, 2013

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!