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!


Tuesday, August 6, 2013

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


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.

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