The seizure attacks have diminished from 3-4 per day for up to 4 hours each (and all night long every 10 days) to 1-2 per day. This is huge! Praise the Lord everyone out there! Praise the Lord!
Tag: Lyme
Yes, no, and wait
They say that the Lord answers prayers with three responses: yes, no, and wait. I believe I have experienced all of these in a big way this past week!
Yes. The answer was “yes” to the question of whether or not I would like to be admitted to the Indiana University (IU) Methodist Hospital Neurology Unit. After an intense appointment with a neurologist in the IU Neuroscience Center, Dr. R. offered an overnight “observation” stay for a video EEG. The hope was to capture the tic and seizure attack episodes to clarify my diagnosis and treatment. So with the clothes on my back (since we were 2 1/2 hours from home), my husband and I followed the epileptologist’s advice and proceeded with the admission procedures. I’d had 2 hours of sleep the evening before and a major episode in the office of the neurologist that morning. Surely I was primed for plenty of episodes as the day progressed!
And that is exactly what followed: at least a dozen more full blown or brief episodes captured on video with dozens of electrodes glued to my head and a heart monitor attached to my chest. The rest of my Tuesday was wretched. One good part was finding some food to eat on the hospital menu fit my Candida diet, yes! The staff was nice. Many unfortunate frustrations occurred as well; you’ve heard enough of those on this blog so I won’t elaborate. The biggest frustration was seeing the inpatient neurologist twice for about 60 seconds each time he visited my room. He never looked at my MRI films or my medical records! His job was to do the EEG study and nothing else so that’s all he did. Perhaps that is all I could take anyways? Who knows.
No. I do not have epilepsy. O.k., my Lyme/mold literate doctor kinda knew that already. The hospital neurologist said I needed to follow up with the Neuroscience Center neurologist for treatment or any next steps in my care. The answer was also “no” to having one of my 3x/week IV magnesium infusions while the IV was still in my arm. I usually have a tic or seizure-like episode when it is inserted or removed so I was grieved when they could not help me with this; I would need to make up the appointment at Dupont Hospital in Fort Wayne, back home. The nurse pulled the IV; another episode followed, off camera.
There were plenty of other “no” replies over the 24 hour stay in the hospital. Perhaps you know what it is like? I was ordered to be on bed rest and fall precautions, tethered with multiple probes, monitors, and a bed alarm. Geez. At least they let me use the bathroom after initially forcing me to take a bowel movement on a commode in the room within view of the video cameras. Geez again. Eventually I was too exhausted to care if the back of my hospital gown flung open. Finally, after 2:00 a.m., I got 7 straight hours of sleep. A miracle for an inpatient setting, no less. Thank you Lord!
Wait. These past 2 days since returning home have required patience with myself as I recovered from the whole ordeal. My dear husband drove a total of 5 hours two days in a row plus participated in the neurology appointment on Tuesday and completed a partial day of work on Wednesday. Steve is a saint, I tell you! So we both have waited for our bodies to recover from exhaustion. I will need to wait to speak to the neurologist at the Neuroscience Center as well. Her nurse was not able to return my phone call Thursday or Friday. Steve and I are waiting and wondering what’s my treatment plan? Do I have one?
My heart is breaking with another project that must wait at the moment: publishing my eBook: Hope Beyond Lyme: The First Year. I need to transpose the final edits into the document formatted for publication. I’m about 3 hours from pressing the “go” button! This must wait until I can concentrate better. I just feel too traumatized and drained by the hospitalization experience. Perhaps it’s all I can take now anyways? Who knows.
I do know one thing: writing is one of the best therapeutic agents for me to come back to my senses! I am sooooooo grateful for you, Gentle Reader! You keep me sane! I am grateful to report that I had a 27-hour reprieve from noxious events yesterday and two less events overall thereafter. Being away from home and in the hospital (with a limited pharmacy for supplements and compounded medications) forced me to go off most of my prescribed treatments. This may have been a blessing in disguise! I’ve started an elimination schedule, gradually adding back one item at a time and recording my symptoms. Turns out that one of my supplements is made from mold! Chucked that one last night after a bad episode. Not sure what caused the one tonight. Oh well. It was around 10:30 p.m. I always have a severe episode then anyways. Got any ideas?
Yes. No. Wait. Perhaps this week is no different than any other with these three answers to prayer, to the desires of my heart. I am so glad that I can trust the Lord with any answer that comes from Him.
1 John 5 14 This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. 15 And if we know that he hears us—whatever we ask—we know that we have what we asked of him.
And when the answer does come, the one we have hoped for with longing and expectation, it can be as joyful as a wedding celebration:
John 3:29 29 The bride belongs to the bridegroom. The friend who attends the bridegroom waits and listens for him, and is full of joy when he hears the bridegroom’s voice. That joy is mine, and it is now complete.
I am somewhere between the themes of these two verses, knowing that He cares for my needs and has a Divine plan that includes all of the events of this past week. In the meantime I must keep my eyes focused on Him lest they wander to places that will get in the way of healing. I will rest in the promise that has meant so much to me these past 10 years. His love prevails and will carry me through all that is to come. Perhaps it will encourage you too?
Romans 8 38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
You have made a difference!
I am grateful for the love, care, and support of some special folks who have helped me make it through nearly two years of serious illness. I am also sad for those who have left my life or misunderstood this time in my life. Hardship is not contagious folks!
First, the good stuff. The person nearest and dearest to my heart is my beloved husband, Steve. I am amazed when I gaze into his blue eyes at the sincerity of his love for me and for the Lord too. When he comes close and holds me through a tough episode, cradling my neck in his hands to comfort me and minimize the trauma of various noxious symptoms, I am humbled! There are not many people on the planet that would do this even for a loved one two years “down the road.” Many would become exasperated, angry, indifferent, or worse by now. Thank you Lord for this amazing man. Thank you for my “Jesus with skin on.”
The next group of folks closest to the fire, so to speak, who have helped me to survive are my Lyme Literate Medical Doctor and our local Lyme disease support group (who are largely his patients). You understand! You get it! And you believe me! When my Doc calls me on a Saturday with the name of a pharmacy where I can get a medication almost $100 USD cheaper, I am grateful! When it’s my turn to share at our monthly Lyme group meeting and my tummy is happy from the yummy snacks we bring that fit our special dietary restrictions, I feel loved! And then when we exchange text messages or Cindy, or Roberta or Diana offers help with a special task, I am humbled. Oh how I pray I may serve you too in your time of need.
A few dear friends and family members have witnessed and endured much of the past 10 years of this incredible journey of transformation. I love the kind of relationships that go on no matter what life brings, picking up when we meet again as if no time has passed. I hope my brother Mike, Brenda, Deb, Kinsey, Patrice, Mary, Judy, Maria, Tami, and a few others feel the same way? Now that my parents and grandparents have passed away, I appreciate even more my extended family including my Other Mom, Other Dad, Uncle Dave, Aunt Lori, Aunt Patty, and Aunt Shirley. I love you and thank you for investing in my life.
There’s a special place in my heart for the online community. Whether I met you on a Facebook Lyme forum, your blog or when you commented on my blog, I credit you with keeping me sane at the odd times of day when no one else cares! Thank you for your “likes,” for following this blog, for your comments and suggestions, for your time. The greatest gift from a friend is a gift of his or her time. When you reach out to me I know that I am not alone. While the internet can be a ruthless place, I am grateful for it’s goodness, especially when I am awake in the middle of the night. It’s pretty cool that my buds in the UK or West coast of the US are online when I am! Please let me know how I may return your kindness.
I’ll save the best for last. In the interim, I’ll briefly state my sorrow for those who have chosen to leave my life. He or she will not be reading this so I won’t waste much white space gushing this or that emotion. I am grateful that when I have endured hardship in the past, I learned the importance of letting go of the people, places, and things that leave my life at these times. Perhaps saying goodbye makes room to welcome the blessings that are to come? Thank you for all that you have taught me. Godspeed, dear ones. I’ll be here if you want to stop by for a chat or walk around the block in the future. As for the things, well they are just things. So long.
And now for the best: the One who knew me and my frame before I was born, fearfully and wonderfully made by Your guiding hand. (Psalm 139) I love you Lord and thank you for saving me from my path of destruction as a young woman. I praise you for crafting the incredible events of my life to bring me more blessing than I could have ever imagined in the middle of my journey on this earth. While I do not fully understand the sorrows that have come, I am convinced that You hold my tears in your hand, counting and caring for each drop, every pain. I have never felt alone. Thank you Jesus for bringing me to Your throne of grace where I may dwell in Your presence now and forevermore. Grow my trust in Your promises, Your plan for my life, Your will for me all that is around me in this world that is troublesome. Come soon my Lord!
So for all of you and you and you and you and You who have made a difference in my life, I give thanks. If I have screwed up somewhere, please let me know and consider forgiving me. I want to make it right if I can. And if any good comes from me, these blogs, or anything else, to God be the glory. He is worthy to be praised!
Blasting through the block
Just do it!
Carpe diem!
Go for it!
He who hesitates is lost!
What’s your excuse?
I don’t have a good excuse. It’s simply a case of a block in creativity. When I feel like crap-o-la-ski (there’s my Polish again) for days on end, I do not “create” new and exciting things very well. Even my writing gets a little bland and I start posting pictures of green frogs saying cute things! You saw that one, right?
So today I have a jewelry order due and I’m stymied by this block thang. So today I will employ the only strategy I have the energy for: a little cleaning, a little organizing, a little reviewing of records, and a little blogging. Then if I can get myself to turn around from the computer and linger over my home studio area, surely the creativity bug will start to buzz a bit . . .
Gratefully, the Lord placed some fresh ideas in my mind earlier today when I was laid up in bed recovering from some noxious symptoms. Receiving a gift of some new ideas without even trying to make them happen is a blessing indeed! I guess all that time spent wandering around Pinterest, a LinkedIn jewelry forum, and watching You Tube videos last month probably helped some too.
Yeah, that’s the ticket! If you can’t go forward, go sideways for awhile. Like dwelling in the grace of my Heavenly Father. Allowing His love to wash over me prepares me for all He has in store for me whether good, bad, or indifferent. Often these days there is no label for the hours that pass, they just pass as I lie on the bed recovering from this or that, looking out the window at the variegated dogwood bushes on a sunny day. Maybe I’ll just focus on the soft leaves waving to me in the wind and woosh of their “hello, how are ya?” I’m sure if they could talk, the crimson branches would say that to me. No one else is around so they wouldn’t be talking to anyone else, would they?
Oh no. Did you see what just happened? The creative juices started flowing again as I continued to write! Better turn around quick and find some pink hemp cord before the inspiration leaves again.
Let’s see, it was a Breast Cancer Awareness bracelet for my sister-in-law’s friend, right? Gotta go. Seeya later! :J
Author’s Addendum: 24 hours later, we have this fun wrap bracelet now available at Trinity Jewelry by Design. Feeling some better and love this new direction! :J
Brief treatment update
Here’s a brief update in my continuing adventure of recovery from Lyme, fibro, mold, and whatever:
Saw a new chiropractor for 7 visits and while the treatment got rid of my headaches and increased my overall ability to move, I had seizure attacks every visit! I finally got word this past week that Dr. N did talk to my LLMD as I had requested. Still Dr. N referred me to another chiropractor for more “comprehensive” care. That did not work out so well. (See posting from Tuesday!) I’ll probably go back to Dr. N after a few more magnesium treatments and after I’m able to drive 30 minutes to his office several times per week.
Began treatments of IV magnesium on Friday the 13th; spent the evening with seizure attacks/convulsions followed by 7 hours of tic/seizure attacks into the morning. Yipes! Had a better day by the time Sunday came, albeit weak from the previous 2 days. (Only had one episode that night, on the way home from our Sunday church home group.) Getting the IVs started has become an arduous, painful process with a minimum of 2 wretched sticks before the RNs find a suitable vein. What follows on the day of treatment or the day after appears to be a herx reaction or healing crisis of sorts. This treatment is scheduled to continue for a month; supplemental magnesium is a promising treatment for me despite the difficulties. I’m praying that the Lord sustains me and that my tender vessels endure it! Tomorrow I’m going to let them give me the PRN narcotic pain med. with the treatment. I just need a break from these awful neck headaches that come from the wrenching head-n-neck motion during attacks. Gratefully, there is improvement with one fewer attack per day, barely a few tics last night and significantly less chest compression pain! Yes!
Rife or Beam Ray treatments are on hold. My tolerance for this sound and light wavelength technology was decreasing so it’s on hold for now.
Waiting in the wings is a new round of low dose antibiotics after some lab testing pending soon to rule out a new UTI. Got lots of itchy, burning, ringing, stinging, stabbing, aching symptoms all over right now possibly flared up by the stress of the IV treatments. “Rest” is my focus at the moment in my weakened state. I do make dinner most nights, however!
A neurology appointment is now scheduled for October 1st at the Indiana University Medical Center in Indianapolis. IU is the go-to place for persons in the Fort Wayne area needing a special consultation. So to Indy we will go at 5 in the morning. Hey, if my beloved can take off at 6 in the morning for a kayak race, 5 should be a piece of cake, right? Gooooo Steeeeeeve! As for me, well I might still be up from the night before!
Steve and I are grateful for some help with a meal once per week from the lovely ladies at our church. It seems like the night they bring dinner something bad happens later on, like an emergency room visit 2 1/2 weeks ago. Their generosity is a real blessing and it sure breaks up the isolation for me when they stop by!
Well that’s the main stuff or at least the news for the masses. If you wouldn’t mind praying for us that would be great. My heart is tender for Steve right now because we had to cancel our trip to see his grandson for Jackson Rees’s first birthday and to see some dear friends in South Carolina. I really need Steve in the evenings when the attacks and physical episodes of collapse are usually quite nasty. This would be too much for a female friend to handle if a gal was staying with me at night and Steve went out of town by himself.
Steve has travelled alone 3 times since this process of illness began for me nearly 2 years ago. We have cancelled a trip before but rarely decline local invitations. Steve just goes to them without me and that is cool with me. Travelling to Arkansas this past summer was very hard on me despite a couple of nice visits during the 5-day trip. So to cancel the South Carolina/North Carolina trip is just what we have to do this time, although it’s a bummer. JR is going to get a big box in the mail real soon! Anyways, if you wouldn’t mind praying a prayer of sustaining grace (for me) and strength (for Steve) that would be super. The Lord has helped us and even blessed us. We are trusting Him and hopeful for all He has in store for us. (Proverbs 3:5-6)
Take care all,
Just Julie
Jesus is for the Wounded 
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