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: seizures
When the time is right
One of the hardest parts about chronic illness for me (longer-duration illness, not permanent, hopefully!) is the change in my relationships. I’ve written previously about the loss of casual friendships, the ones based upon common interests or gathering places. Today I’m talking about the one between a husband and wife.
Steve and I have been married almost 6 years. I call him my “intended beloved” since I believe the Lord has blessed me with an amazing man of God as my life partner. We came together in our late 40’s, having learned much about life, people, and the Lord’s enduring grace in the years before we met. We’d both lost our youngest sibling and the last of our grandparents within the past 10 years, shared both similar and completely opposite interests, had to relocate due to divorce, seen plenty of changes in the world around us, and came to a saving faith in Jesus Christ as adults. Still when we got together we needed to work on a few things as a couple. I believe these things have become our strengths and bonded us together for life. Yes!
Steve and I share the “love language” of caring touch. (For more on the 5 love languages, see the work of Gary Chapman.) Therein the challenge of late lies. The most noxious symptom of Chronic Inflammatory Response Syndrome for me is seizure-like episodes, 3-4 times per day. Most any sensory stimuli can make a seizure attack worse or even trigger one if it is intense enough. An episode can become worse after it starts if Steve or anyone touches me. So imagine a loving spouse attempting to comfort his or her beloved at a time of severe illness, reaching out and discovering that the gesture actually makes the person worse! And if this happens over an over again, despite the caution, precautions taken to be gentle or vary the type of comfort, the spouse can become discouraged. In our marriage, we have decided to work with the symptomatology and find a firm touch or closeness by proximity that sort of worked for me. Thankfully, Steve did not stop trying altogether. I understand that could have happened.
After all, the worst seizure attacks and convulsions happen late at night. Steve often needs to go to bed to get up for work or another commitment the next morning so he simply cannot stay up with me night after night. Our physical intimacy suffers. Oh and if the attack isn’t so bad and we attempt marital relations, it’s a crap shoot whether or not the noxious symptoms start again. Can you imagine turning something intended to be precious into something so ugly? We often don’t even “go there” if I’m feeling sick or I’m in “pre-tic mode.” The heartache of frustrating my spouse isn’t worth the Russian roulette we must play to see if things are going to work out o.k. Stopping a tender moment also wrecks my thought process; it wrecks “the mood” for me. Steve just says, unbelievably, that he doesn’t mind or that we had a time of closeness anyways. Where do they make guys like him anyways? Certainly I had not seen any in my past . . .
And this is where I must trust the Lord to sustain me, to sustain Steve-and-me through this season of our relationship. I am incredibly blessed to be married to a man who loves me truly, “in sickness and in health.” I did not experience this when I was married before as a young woman. The Lord allowed certain health issues at that time to challenge us, test us, deepen our faith and we both failed to lean on His leading to overcome the trials. In the end, my former spouse turned to another woman for solace and physical intimacy. She was an unlikely comfort: wealthy, mother of 6 children, and spouse of a man about to be imprisoned for embezzlement. Craig left anyways. And what that left me was a fear of relational intimacy or at least of trusting another man to endure the inevitable trials of life.
In the time that followed as a single woman, I turned to my Heavenly Husband for comfort, protection, provision. He was my constant companion and much healing occurred. It wasn’t until a time of serious illness struck 2 years ago and 4 years into my marriage to Steve that I realized a little more recovery was needed. Steve’s steadfastness strengthened by his true relationship with the Lord has never waivered. Never! I am humbled and grateful. I often see in Steve: “Jesus with skin on.” Steve has been wounded by his past and an ex-wife who disrespected him terribly. Regardless, he has rarely brought any vulnerability from that experience to our marriage. He, too, has allowed the Lord to “restore the years the locusts have eaten” (Joel 2:25), rising up to become the spiritual leader God intended. So glad he’s tall too. I love looking up to my Stevers.
When the time is right, when we have submitted ourselves to the refining fire that can be the trials of life, when we are faithful to the calling the Lord lays before us, we too may be rewarded with blessings beyond belief. Those blessings may not be what many think of as gifts or rewards. For me and my beloved, those good things are the ability to overcome the wretched things of life in a way that actually deepens our love relationship together as well as our walk with the Lord. My hope in writing this is that you are also seeking the One who knows your pain and loves you just as you are: the person of Jesus Christ. (Psalm 41:1-3) He may indeed bring you an angel to minister to your needs, a “Jesus with skin on.” He may bring you to the foot of His throne of grace a few times in desperation, alone. I know that He will not frustrate you beyond what you can handle, however, and will fill your heart with unspeakable joy someday. (Romans 5:3-5)
I am grateful to see the latter despite wretched illness. I pray that you too, Gentle Reader, will be able to see all this and more when the time in your life is right. (Ecclesiastes 3) The sorrow will not be wasted, of that I am sure if we but keep our eyes fixed on the face of Christ. We may even get a sweet snuggle with someone special too!
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Addendum: A new medication is bringing new hope. I’m down to about 1 attack per day and they are less intense. We are holding onto hope as this journey of illness appears to be changing. Praise the Lord!!!!
Progress not perfection: it’s all in the details
One of the slogans of the 12-step program is the title of my blog today. Progress not perfection is my sentiment as I sit on the precipice of either potential progress or doom. Or maybe it will be that it was doom and is now on its way to progress? This is a mini treatment update.
First, the potential doom: I am reacting to most foods, supplements, meds., and treatments in a noxious manner lately. Then, out of the blue I took a 1/4 scoop of sugar laden cholestyramine (CSM) to attempt to counteract the convulsions that came with 1/2 cup of homemade, oven roasted sweet potato fries. I had added coconut oil and a clean protein to my quick lunch to balance any extra carbohydrates from the sweet potatoes. Not sure if it was the carbs or some latent mold in the potatoes but I was down for the count, so to speak, within minutes. I had a more delayed reaction to them and a couple of other things consumed together yesterday so I wasn’t that concerned. Mistake.
So I cancelled my 2:00 p.m. IV magnesium treatment; I could not drive myself there. I figured that I might as well get the CSM treatment over as it causes seizure attacks anyways, even with a 1/4 scoop loading dose of 1 gram. And to my surprise, the attacks stopped! I was still pretty wiped out though. Perhaps there was a war going on inside my central nervous system and the victor was not yet declared. So all I could do was veg out on the computer for a few more hours. It sure beat the alternative of lying in bed shaking some more. Maybe I should have tried to add to my 4 1/2 hours of sleep last night? Oh well. Decisions don’t come easy or get made well in this type of mental state!
Second, the progress: my tolerance for CSM might be improving. If it can stop the progression of a reaction then maybe I can take it without a reaction by itself. I think I’ll give myself a day to recover then try to increase it to 2 doses tomorrow. Lord willing, I may be onto something good! And if that good lasts for more than 3 doses, well then we might actually have something really good.
CSM is a resin typically administered to lower cholesterol. Persons with Lyme and mold illness use it in Dr. Shoemaker’s protocol to bind with mycotoxins that have a neurotoxin effect during treatment. CSM removes the bad guys from the body (according to clinical research); there are some gastric side effects. I was unable to tolerate it earlier this year during the stress of mold remediation of our home and had to discontinue even a low dose.
It’s dispensed as a very grainy powder with either massive amounts of sucrose or aspartame to cover the taste. After calling 6 pharmacies and 3 drug companies last week (including being forwarded to an “off shore medical center” in India for one of them!) I hit a dead end trying to locate CSM without sweeteners. Then a call to my favorite local compounding pharmacist revealed that the powder is indeed available but at incredible expense. He would investigate further and get back to me. In the meantime, the Massachusetts compounding pharmacy from which I get my VIP (vasoactive intestinal peptide) package arrived with a brochure that included CSM without sweeteners! Their price is the same as what I pay for VIP. It’s expensive. Turns out that my local pharmacy cannot even purchase it for the price that the MA pharmacy would charge me. Well then. A plan is coming together.
Unfortunately my LLMD appointment was cancelled Friday. I spoke with desperation to the not-so-friendly, overworked receptionist who notified me of the cancellation, pleading for an order for sweetener-free CSM powder from the MA pharmacy. Have you ever given detailed information to someone on the phone then wondered if they were just pacing themselves on the other end of the line and not really taking any notes? I had that feeling. I had no idea if anything would happen until I could confirm everything with the phone nurse next week. The weekend ended up with many wretched moments as I experimented with the sucrose-laden CSM. Sugar feeds Lyme, Candida, and fungal/mold infections. Not good.
So therein lies my caution with advancing CSM, my new wonder drug, until I have the sugar-free and aspartame-free version. If I’m having mysterious trouble with sweet potato fries oven roasted in 3 types of organic cooking oil to offset the glycemic impact, then I ain’t gonna mess much with the sugary version. Too bad that I get headaches with aspartame. Or maybe it’s a good thing. Aspartame can break down into formaldehyde and is associated with all kinds of health issues. You know what they preserve dead corpses with right? I’ll never forget the smell of formaldehyde from gross anatomy dissection lab in college . . .
Oops. I’m on a bunny trail. Well thank you for reading this rant and helping me to sort out a few things. Since the recent expert evaluation of seizures at a major university hospital didn’t yield any new information, I’ve been wondering what the heck to do next. A person with hours of multiple wretched events per day keeps looking for answers you know, with the brain cells that are left firing in the correct sequence. The Lord has definitely powered the sustaining grace of this renewed pursuit of CSM and any mental ability to write about it.
Oh, and some other progress: just finished the final edits of my upcoming eBook Hope Beyond Lyme: The First Year. I’ll do a final read-through and copyright check then publish it online. Stay tuned for some more good news!
Yeah Lord for anything good that happens from here! Your strength is shining through once again. This vessel is broken, cold, and quite spacey. Help me finish the race you have set before me and publish this work you have created in me. In Jesus’ name, amen.
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UPDATE: The CSM is on it’s way across country from Massachusetts to Indiana!
Sometimes the night just passes unnoticed
Psalm 121
I will lift up my eyes to the hills— From whence comes my help? 2 My help comes from the Lord, Who made heaven and earth.
3 He will not allow your foot to be moved; He who keeps you will not slumber. 4 Behold, He who keeps Israel Shall neither slumber nor sleep.
5 The Lord is your keeper; The Lord is your shade at your right hand. 6 The sun shall not strike you by day, Nor the moon by night.
7 The Lord shall preserve you from all evil; He shall preserve your soul. 8 The Lord shall preserve your going out and your coming in From this time forth, and even forevermore.
I’ve heard this called the bedtime psalm. Sure beats the one I grew up with:
Now I lay me down to sleep
I pray the Lord my soul to keep.
If I die before I wake,
I pray the Lord my soul to take.
The childhood prayer above offers me no comfort during a night like last night. If the worst outcome of 15 or so total hours of noxious symptoms last evening and overnight were to repeat itself, I would need the truth of God’s word on my mind and in my heart. Some wishful rhyme uttered as a “prayer” has only the fleeting power of a feel-good sentiment. It wouldn’t refresh my husband enough either to feed me or carry me to the bathroom again. Only God’s word has the power to transform our fragile lives, and I know He will transform mine someday. I know he sustains my beloved with supernatural strength. Only God’s word provides sustaining grace for all who suffer, for when sleep will not come.
This afternoon I must somehow get to 2 medical appointments despite the lethargy, pain, sweats, stiffness, low grade neck headache, ringing in my ears, and so on.
Oh Lord, I do hope these trials end soon! Maybe I can nap later this afternoon? Yawn.
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.
Jesus is for the Wounded 
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