Zambian Brain Bug

During a recent visit to one of the myriad of doctors we've seen, the question was raised by my sister. "Could you have gotten something in Zambia?"

Everything was coming back negative, so this sparked an idea. I went to the CDC's website, typed in Zambian dirt parasites and the response was overwhelming. My trip to Zambia in 2013 was a very intense, personal trip. I was with the people in a small group. Holding sick babies, playing with children in their villages, walking in soft dirt with shoes and without, and enjoying the experience.

And in that dirt are thousands of parasites and bacteria and I think I brought one home. It just took a while for it to rock my world. Looking back, I see symptoms now easily attributed to stress. Hindsight is alway 20/20.

So last Friday, they took vials of blood for a test called a NMO AB looking for just this, the brain bug. It was sent off and we're awaiting the results. I will have a biopsy on Friday for a small sample of brain tissue as this is the last piece of the puzzle. 

What started on September 30th and has kept me on hold since then, has been the most amazing journey with God, my family, my friends, my church and my community.

I have learned so much, I'm grateful for so much.

From day one, I've said God's got this! He was not surprised on September 30 and I believe Jeremiah 29:11-14 has been my life verse for a reason. 

This story will continue to unfold and I'll continue to tell it. God gets all the glory and has done nothing but been to be good to me, even when all I could say was "It is well with my soul."

peace.

Best News Ever!

Lots of news about Me! Wednesday, November 5th at 8:00 am, I have an appointment with a neurologist to explain tests results and future plans. The tests are complete, they will share those results and the wait is over.

The neurosurgeon's words to me were "This is the best possible scenario. You will live a long, happy life. I couldn't be more pleased!"

When we know details after Wednesday, we'll tell you. Until then, my meds will remain unchanged so roids rule and let's continue to keep me calm. 

Just wanted to share the miracle God has given our family!

Thank you for your continued support but God has always had this and it is well with our souls.

News of Glynis

Hello all, it's Jenny, Glynis' sister,

Thank you for your continuing prayers and support.  Tuesday we went to the pyramid! This building is also known as the NeuroScience Institute at Mercy.  We met with a very knowledgeable and patient duo of Neurosurgeons, Dr. White and his PA Mathew Bertus.  

Our initial 30 minute appointment became a 3 hour appointment when Dr. White understood Glynis’ desire to be proactive.  

As you may be aware, a diagnosis has still not been determined even after an emergency room visit, an overnight hospital stay, multiple CT and MRI scans and many assessments.  Dr. White performed a spinal tap and additional blood was drawn for a comparative workup.  

We are on a positive, proactive path in hopes of obtaining answers and creating a treatment plan, if needed.  Today we know that the right side of the brain in the initial MRI was so swollen it had pushed the left side past the midline and it could not be seen well. With steroid treatment, the swelling has been reduced over-all and the brain has taken a much more centered place in the cranium and revealed swelling on the left side.

Glynis will remain on steroids, though a much lower dose, since the results from the spinal tap and the blood-work have come back completely clear. Based on those results, on Monday, Glynis will go for another MRI and further steps will be determined at that point. 

Please keep those prayers coming. We are peaceful with the process and thankful to have skilled, proactive Doctors!

 

Hi!  It’s Glynis' turn.  

What I am sharing with you today is the most personal part of me and most important to my continued well-being.  

The easiest and best way for me to keep you updated on my health is through my blog, gr8fulg.blogspot.com.

I will update the information on this site as we have news to share.I will post to social media and I will email the link to several groups and the many individuals who are actively supporting us and have contacted me for an update.

I have been overwhelmed by the outpouring of support and I wish to keep you all well informed, however, the current medication regimen has reduced my stamina tremendously.  

Though I appreciate you all, I don’t have the ability to communicate with each of you individually.  I have a small, intimate group, like my daughters, who have unfettered access to me and will be the only ones I will be personally in contact with. Thank you for allowing me to communicate through this media.  I look forward to speaking with each of you when time and energy permit.  Until then, my blog will keep you all fully informed.

 

Thank you again.  I do love you all!   God’s got this and it is well with my soul.

 

Glynis

Best Day Ever in Chicago!

Dv

So to our new friend Acie Boyd, I just wanted you to know the rest of the story of your beer lovin' bald guy Jim and our lunch on Saturday. 

This year began with Jim losing his job, starting his own company, finishing his BA degree, me losing my job, btw I'm Glynis, the bald guy's wife of 30 years. He now works two weeks a month in Madison, two weeks a month in OK. It's been a year of change and challenge. And two weeks ago, they found swelling in my brain on the right side. The docs don't know why, lots of unanswered questions, lots of wondering. We will find out more this week with Jim in Madison and me in OK. 

 But I had this trip scheduled to Madison to see our daughter and son-in-law before this all happened and the doctor said it was ok as long as I took someone with me. My sister could come with, so we came. 

My sister, Jenny, in the last two years, has lost a 19 year old niece to melanoma, her father-in-law has just recently rung the clear bell on his leukemia, had a God-child killed in a car accident, her son recently deployed with the Air Force after getting married, and her mother-in-law was diagnosed with stage 4 cancer just a couple of weeks ago. And she is always the support and caretaker. She is an angel. And I felt like this trip was just a small break, a gift to her who has been such a caretaker to all those around her. And the bald guy agreed.

I could not have come without her. 

So we find ourself on the Navy Pier, we wanted to ride the architectural boat tour and we needed lunch.  We come to Riva's and we're seated. We're rowdy Oklahomans and our waiter isn't quite sure of us, but you were obviously game for an adventure. And you made a celebration out of everything. You didn't know, you just did your job. You joked with my bald guy, you talked beer and scotch. You got us a map, helped us find the silver bean. Gave us hints on taxis, talked about special beer cans. You celebrated my sister's 46 birthday with that amazing cake and suggested milk, our favorite! You joked, smiled, played and made this special memory something we will never forget. And you helped melt away all the cares of our day with your care of us.

When you ran downstairs to question if we meant to really leave that tip, I only wish we have done more, and you had tears in your eyes and a hug for my Jim, and you won our hearts.I don't know your story Acie Boyd, but you will be in hearts for ever. Thank you for being you, it touched our lives and I wish you all the best, every day, for all your days. And you danced....

Two weeks

Did you know your life can change on a dime? It can.

Two weeks ago, it did. Read http://gr8fulg.blogspot.com/2014/10/a-new-day.html.

But here's what I know today. Nothing new. 

I do know sodium is bad and makes me crazy. Sugar is bad and makes me crazy. Caffeine is bad and makes me crazy. It's my story, I'm sticking to it. Low fat, lots of vegetables, great proteins, complex carbs do not make me crazy and I feel better behaving. I'm in total control of my yogurt flavors. Period. That's all. And for now, it's pretty cool.

I'm a totally dependent child to a large degree. I can't drive, I can be alone for short whiles, and each day I've been totally overwhelmed by the love of the people I'm surrounded by. Love. Support.  It's a beautiful thing.

My heart breaks for those who don't know it.  From those around them to the God who created them. I pray one moment in time, each will. Fervently.

This "practice" of medicine is weird. It's a wonderful, flimsy, guesstimated thing. I will have an MRI and PetScan at the end of the month. It may show something or may not show anything at all. We'll see. Until then, we wait. I manage and I do not eat caramel macchiato Greek yogurt. You shouldn't either. 

God's got this. Of this I am sure.

Peace.

On Being Good...

So I have to be good for 30 days. I have to rest, I have to take meds, I have to accept help and it's going to be a different kind of journey for me. I'm the helper not the helpee, I'm the big sister, the supporter, the strong one. Rrriiiigggghhhhtttttt. God is. And I'm learning to let go. To trust. To focus on faith and my incredible creator. He is who He says is. And He is for you, too! Submerge yourself in God. Peace.

A New Day

I'm back. It's October 1, 2014 and I've got a lot on my mind. 

So yesterday began much like every other day. Got up, readied for the day, sat outside with Dexter for a little while, kissed Jim goodbye and went to my interim position with the OKC Philharmonic. Love them! Go see a concert, you'll love them,too. www.OKCPhilharmonic.org.

But I digress.

About 11:00 am, between phone calls, ad insertions, brochure approvals, sweet Janie asking about lunch, fabulous Stephen helping me with another project, etc...I felt like my foot fell asleep.

But then the sensation began moving up my leg, to my hip, waist and then my shoulder. I was writing an address on an envelope and my arm went numb along with my hand. Couldn't control the pen and as it moved up to my face, I drooled a little, felt my tongue numb, my smile droop and had a hard time talking on the phone that just rang. My thoughts were a little garbled as I couldn't put them together easily. So I sat for a moment, drank some water, and waited. The numbness passed, I went to the bathroom, tried to talk to Liz and fumbled it slightly, returned to my office and waited.

The symptoms disappeared, I felt stronger, and I decided to go home. I tend to be a little independent and a little strong-willed, so I drove myself home. I know but ya know....

I called Jim, told him what happened and he encouraged me to phone my doctor. I did and his nurse recommended a trip to the ER. So of course I got home and in the most prudent of manners, I kind of dismissed her. Adrian gets home not too long later and suggest I text Kayci. Of all the doctors in the world, I love Kayci. I've watched her grow from the age of 13 and she is a wise woman. I trust her and so I told her what was going on and she encouraged me to also go to the ER. God knows my determined streak and deep down, I knew I needed to go. Cause this was just weird and like any good Googlefile, I'd googled my symptoms and it was a little alarming. Word to the wise , information is fantastic, do it after you have a doctor to help interpret. Or it can curl your toes!

So you probably know the drill, got to ER, fill out a paper, wait, Talk to nurse about symptoms, wait. Go to room, talk about symptoms, wait. See doctor, talk about symptoms, wait. Doctor orders CT scan, wait. CT scan happens, wait.

And wait. And then...

The doctor comes in and says something to the effect of he has gotten the results of the CT scan, there is a lot of swelling in the right side of my brain, there is an unidentified mass and he's so sorry. He'd been thinking I'd had a TIA due to how bright eyed and bushy tailed I was, but we'd need to do more testing and he was admitting me. Who knew having a mild stroke might have been the good news portion of the good news/bad news game? So off we go to the second CT with contrast added and the MRI with contrast as well. I'm an artist, I understand contrast, it brings out foreground and makes things pop. It's necessary for depth. Woohoo. 

So I'm wheeled to my room with my warm blanket, I see Sam & Ann, my delightful, dedicated pastors. They journey with me hugging me and encouraging me. Best people ever. As we round the corner, I see my sweet brother-in-love who I thought was in Tulsa at a volleyball game, he hugged me too. Surprised, I hug him and he tells me they had "car trouble," whipped a Uie and raced back to me. Which means my sister is near by and they lied to my niece. All forgiven, God knows they are the most supportive people in the world and I needed them here, too. My nephew and my new niece were here and I'm love them for that. 

So I get in the room, get settled and am surrounded by my rock, my husband , my bald guy. My daughter, my joy, my Adrian. I soon talk to my daughter, my faith, my Andrea. And my mom, my constant, my cheerleader.

Then my church elders, my dearest life friends and the Holy Spirit cause they are here to PRAY!

I believe in God the Father Almighty, Maker of heaven and earth: And in Jesus Christ his only Son, our Lord; who was conceived by the Holy Ghost, born of the virgin Mary, suffered under Pontius Pilate, was crucified, dead, and buried; he descended into hell; the third day he rose again from the dead; he ascended into heaven, and sitteth on the right hand of God the Father Almighty; from thence he shall come to judge the quick and the dead.

I believe in the Holy Ghost; the holy catholic church; the communion of saints; the forgiveness of sins; the resurrection of the body; and the life everlasting. Amen God the Father Almighty, Maker of heaven and earth: And in Jesus Christ his only Son, our Lord; who was conceived by the Holy Ghost, born of the virgin Mary, suffered under Pontius Pilate, was crucified, dead, and buried; he descended into hell; the third day he rose again from the dead; he ascended into heaven, and sitteth on the right hand of God the Father Almighty; from thence he shall come to judge the quick and the dead. I believe in the Holy Ghost; the holy catholic church; the communion of saints; the forgiveness of sins; the resurrection of the body; and the life everlasting. Amen. (The Apostles Creed)

With all my heart.

I also believe this was not a surprise to God and my life verse is Jeremiah 29:11-14. He has a good plan for me and I will see it fulfilled.  

For now, there are unknowns to us but I'm surrounded by prayers and faithful people and this is all I need to know. The battle is God's and He is faithful. 

God is good, all the time and all the time, God is good.

Peace.

Good Bye Blog

I have enjoyed this blog for many years. I've written my little heart out, been silly, been honest, been cranky even...sometimes.

But I think I'm done. Life is too busy and in trying to simplify, I must release. And I'm releasing this.

Thank you for reading. Thank you Sherry and Barb for actually commenting. Thanks interwebs for adding to my perpetuity somewhere.

God bless you all.

peace.

50th Birthday Giveaway

Yesterday was probably the best birthday I have ever celebrated! I started by asking my friends for stuff to give away. They responded in a HUGE way! I got to give away 50 presents full of goodies and we even had leftovers to leave behind to bless others.

We shared cupcakes, life stories, lots of laughs and lots of love. Thank you to everyone who gave, everyone who came and to the Lord above for letting us live this life together.

peace.

I'm turning 50 in February

I knew the time would come when I would get to be 50. I'm ok with facing this milestone birthday, but it did make me stop and think about what I wanted the celebration to look like. I don't want to be the center of attention, I don't really want presents and I love helping others.

After some consideration and brain-storming, this is what I want to do...I want to give my birthday away!

I've talked in the past about Joe's Addiction and my friend, Jamie Zumwalt. Channel 4 picked them as a Pay it Forward recipient and that was fun! But $400 goes quickly and that was a while ago. And I love giving presents!

Here's where I need your help. I want to put together 50 presents to give away. I want them to be a blessing to those who receive them so I enlisted Jamie's help in making this list. 

I'll buy the boxes and do the wrapping, you can help me with filling them!

Wanting 50 of each: So far I have

hats -  41 

gloves - 46 pairs

socks - 30 pairs

handwarmers - 46 

scarves - 31 

blankets - 26 

chapstick - 57 

earbuds - 16 

The first 7 are necessities for those without homes, the earbuds are just for fun and providing a little fun for these precious folks makes me happy.

So will you help? Leave a comment on this blog, I'll get in touch. If you know me in real life, call me or stop by my house. Catch me on Twitter @glynis_crawford. I'll need everything by February 1st.

We can do this and it will be the best 50 year celebration I can imagine. I will have cake at Joe's on Sunday, February 23rd at 3:00 pm and you can come share in the joy.  Joe's is located at 1806 SE 59th, just east of I-35. 

AND Thank you.

peace.