Recovery from Serious Illness: Lyme, CIRS, & More – Page 96

Biotoxin illness not Lyme disease for me

Published on May 1, 2014 by Jesus is for the Wounded6 Comments

As of yesterday and my second appointment with a biotoxin illness specialist, my hunt for healing will focus on biotoxin illness and not Lyme disease. Perhaps you noticed awhile back that I changed the name of this blog? Join me in finding “Hope Beyond” the challenges of today; for me this blog will always give the praise and glory to the Lord, Jesus Christ when victory comes . . .

I found a remarkable video on You Tube that summarizes mold and biotoxin illness. Please look beyond the promo for his colleague’s book and his mentioning of “ME” or Myalgic Encephalomyelitis. I do not have ME although I understand that biotoxin illness and ME are similar, much like fibromyalgia and chronic fatigue syndrome have similar manifestations. Now that my diagnosis is clearer, I will be largely following the treatment protocol of Dr. Richie Shoemaker at: http://www.survivingmold.com as coached by one of his trained physicians.

See whatcha think and let me know in the comments below. There is hope! Just Julie

When death is no longer an option

Published on April 29, 2014 by Jesus is for the Wounded4 Comments

Who was it who said to “start with the end in mind?”

Well the “end” of everything in life as we know it will not be death per se but the second coming of our Lord, Jesus Christ. He will be bringing about the Great Tribulation, reign on Earth for 1,000 years, bring about the death of Satan and the world as we know it, and bring those who believe in Him to the New Jerusalem. There we will reign forever with the One True God. I can’t wait!

And yet wait we must as it is not the time for His return. So working back from this end I will examine a few personal challenges the current day . . .

Brother Mike

Incredibly with a remaining part of one of two carotid arteries, my brother is making slow progress (after a massive stroke two weeks ago). As it turns out his progress may still not be enough to keep him longer in a rehabilitation facility. Enter here the plight of the uninsured. Decisions about his care will be made by a team of therapists who are required on Wednesday to make an “educated guess” as to his the outcome of his treatment 2-3 weeks from now. Healthcare policy largely mandated by the US government requires them to make this determination. Today the Lord led me in “buying” him 3 more days after negotiating with the Physiatrist on Michael’s unit. Go Sister Bear, occupational therapist.

Overall it looks like Mike will be discharged soon to a nursing home for placement and not further rehabilitation. This would be sad. His beloved fiancé, Lisa, is doing the best she can to juggle her own responsibilities, visit Mike at the hospital an hour away from their home, and complete paperwork/phone calls/research/etc. needed for his discharge planning. He would not likely receive therapy services thereafter until his Medicaid kicks in; when it does start the amount for which he is eligible could be limited. I just hope they get him the proper wheelchair, feeding instructions, and do more than keep him “clean and dry” in a long term care facility. I don’t have high hopes for this at the moment.

In time perhaps Michael will be able to receive skilled therapy services and return home. In time perhaps Michael’s eligibility for VeteransAdministration and community services will be determined. To return home he will need to be safe enough to be left home alone when Lisa is at work while she graciously continues to provide for both of their needs in addition to her 13 year old son. We are all praying for them at this incredibly stressful time in their lives. My burden from afar (3 hours by car) is light by comparison. Sure I am making a few phone calls, found a family member with a commode, and am working on locating a walker but that is small compared to his incredible care needs. I do pray that some additional resources appear soon . . .

Sister Julie

This past weekend was a tale of two extremes got me. I started drinking Bulletproof coffee this past Friday: Freshly ground-and-brewed, mycotoxin-free, Swiss water decaffeinated coffee with ghee (butter) and MCT (derivative of coconut) oil. Everything gets blended in our Vitamix for a frothy hot drink that is quite good. (Remember, I am used to consuming unusual foods these days!) I had also begun taking a special formulation of B vitamins from Dr. Amy Yasko’s website to support some nutrigenomic issues. (Since the Functional Medicine MD set me adrift last week I struck out on my own for new solutions.) Saturday was an incredible day: waking up without seizures and enough energy to get showered and dressed before 10:00 a.m. just doesn’t happen for me! By 10:30 a.m. I had joined my hubby in cleaning our garage! Four hours later we were at a logical stopping point with the project nearly completed. We will recycle, discard, or sell either online or at a garage sale a goodly amount of items we no longer need. Ahhhh. Feels good.

Then comes the other extreme: almost 2 days with intermittent seizure attacks and bedrest. Crap. I guess I should have worn a mask when cleaning the garage? Maybe I shouldn’t have increased the MCT oil to twice per day? Or maybe the greatly increased activity level was just too much for this tender frame? Crap again. This is such a high price to pay for just taking care of our home. I enjoyed my time working with Steve so very much. I love doing projects with him! It had been soooooo long since our last big deal together . . . except for maybe driving up to Michigan to see Mike 2 weeks ago. Yeah that one took its toll on me as well. Crap, crap, crap.

So the worst case scenario for my brother is another stroke or even death. Since he appears to be stabilizing and improving I can set those fearful thoughts aside. I am quite confused about the Lord’s plan for all of this yet I choose to trust Him anyways. And as for my own illness, well, I guess the moments of improvement give me hope for my own recovery someday too.

On Sunday I decided to donn my firearm when Steve was selling some items from our home. He had opted to have the buyers meet us at the house. We took some precautions and everything worked out fine. His son, Daniel made out like a bandit (!) and we are pleased to have made it happen for him. But as that 380 pistol passed from my hand to its hidden resting place later that afternoon, I had to pause for a moment. At another time in my life it would have been dangerous for me to have a firearm in my possession. I had not yet learned how to shoot a gun, been taught gun safety, secured a carry permit, or decided for sure that life is worth living no matter what the current crisis.

You see I have faced overwhelming stressors in my life many, many times before. One time I had to ask a boyfriend to stay with me because the emotional pain that I was enduring was so great that I did not trust myself with my own life. I feared what I might do if I were to be left home alone. Flash forward about 15 years and that trust was tested once again. Gratefully eight years later, the overwhelming trauma of painful, daily seizure attacks, my brother’s stroke, and so much more is met with a solid faith in the Lord Jesus Christ and His plan for our lives. He is faithful. I trust in His power, His sovereignty over my fear, my pain, my doubt. Overcoming the traumas of the past by the grace of God taught me that. My firearm is for protection and nothing else.

When in doubt, I often start with the end in mind. I have always been a future-oriented person which I consider to be both a quality of leadership and a source of considerable anxiety! Perhaps my writings could talk a little less about my vulnerability and a little more about the Hero leading my heart PERIOD. With the God of the universe at the helm of my life I have nothing to fear, nothing to doubt. I will be able to endure the stress and the stress will be less with my hands off the “trigger” that represents a need for action at the wrong time. To wait, to rest and languish in His loving care helps me transcend the suffering. He has held me close in the comfort of His wings in the past and holds me close in the present as well. Many folks yearn to feel His presence. Hey, I get to feel it every day! He makes Himself real to me every single day.

Lastly, the greatest manifestation of darkness in this life is death. One day all too soon His glory will replace the darkness with His consuming light. All things will be made new and we who believe will reign with Him forever! My brother and I will be made whole to love and serve our great God. Wow! So I pray: Lord, help me to live this truth in today with hope and shining Your light for all to see. Thank You for being here with us in our journeys. If the load may be lighter, please bless us with Your healing grace and mercy. Until then, You are our King and praise be Your name, Emmanuel. Love you, Just Julie

The Sister Bear Speaks

Published on April 26, 2014April 26, 2014 by Jesus is for the Wounded5 Comments

While my brother’s fiancé is there at the hospital with him in the thick of things, his next of kin is a bit upset. I am too upset to make any rational decisions. The feelings run deep with me. It’s all I could do to be polite on the phone today to the social worker from the rehabilitation unit where Mike is hospitalized. At least Steve and I have the weekend to sort things out . . .

Very likely Mike will get booted out of the hospital next week and sent to be housed in a nursing home without additional rehabilitation services. His insurance is “Medicaid Pending” and his requiring of 24-hour physical care post discharge, a situation that cannot be met at home for valid reasons, is pushing the hospital to discharge him from their care. I don’t get it. In my 30+ year career in rehabilitation as an occupational therapist, the discharge criteria virtually always hinged on a lack of progress, not the particulars of discharge planning. It’s a new day: a new reality. If you can’t do what the government-driven healthcare system wants you to do then I guess they can wash their hands of you.

Perhaps he will go to a nursing home or perhaps by some miracle the Veterans Administration (VA) will accept him on such short notice. If the decision is the former, he will be fed 3 meals per day, kept clean and dry, and left to sit slumped in an overstretched wheelchair or geri chair in front of an out-of-tune entertainer from the long term care circuit with a pair of maracas shoved into his functional hand. The wailing of the demented residents will woo him to sleep at night as he tosses on his waterproof mattress to get comfortable around the bedsores that no one will find until it is too late for healing. Thickened Pepsi to drink? Not a chance. At least until his fiancé cleans up her make-up from crying long enough to ignore the swale of urine stench long enough to bring it to him. God bless her faithfulness visiting every day through this incredibly stressful ordeal!

Or perhaps it won’t be that bad. Maybe he will get into a VA rehabilitation facility with little red tape and get stronger. Regardless, the hope of at least a few weeks of physical, occupational, and speech therapy has vanished for the time-being. And Michael has no idea yet, what is about to happen to him next week. I left a message for his saint of a fiancé and she has not gotten back to me yet. Maybe she is in as big of SHOCK as I am. Maybe she is exhausted and horrified from touring nursing homes closer to where they lived in the “thumb” area of Michigan. I don’t blame her for taking a little time for herself to sort things out. My heart goes out to Lisa. She has been through so much these past two weeks as her life has changed forever.

As for me, 200 miles to the south and struggling with four hours of seizure attacks multiple times per day, I am overwhelmed with the stress of it all. Just seeing the missing flooring in our bathroom from yet another mold remediation project is enough to stub my toe even when the light is on. Somehow I completed a few errands outside the home this afternoon and made a simple dinner. I talked to a few family members who offered mixed consolation while I was stepping on the elliptical for 20 minutes, phone in hand. Geez! I haven’t used that thing in a few weeks! I must be stressed out. Thank goodness the nightly seizure attack episodes haven’t fully ramped up yet tonight: I needed to talk to you, Gentle Reader! I started to type and there you were. Thanks so much for being here. I can barely speak I am so very upset.

*********************

Life goes on despite the drama of the moment. If Steve and I don’t impulsively drive 3 hours north to go to the hospital tomorrow and I’m stable enough, we will attend the 50th wedding anniversary open house of some friends. It will be good to enjoy some Christian fellowship. Then maybe my beloved Steve will start to work on the bathroom floor tile project and I’ll put together the jewelry orders that have been sitting at my work table this past week. Lord willing I’ll continue with the Spring clean-up of our gardens and Steve will mow the grass for the first time this year. Looks like the narcissus will be blooming within a day or two with their yellow-throated happy faces reaching up to soak up the sun. The sunshine will feel good on my broken frame as well and I will enjoy the freshness of the air this time of year. There’s no better hue of green than that of the tender leaves emerging from their Winter slumber: truly lime, truly sublime too. Some call it “horticulture therapy.” Gee, maybe I should go right now poke my finger in the dirt of the violets waiting to fill the self-watering planters I thought I might plant tomorrow . . . I need a fix of something and a shot of tequila is out of the question these days . . .

*********************

Please pray for us. This sister bear is hurting more for her brother than anything right now. My beloved Steve has been so loving despite the challenges of my illness, demands of his work, and his other responsibilities. Lisa has got to be struggling as well, balancing work, the care of her teenage son (Alex), and assuming increasing responsibility for Michael’s affairs. She and Michael have known each other almost 7 years. Her 13 year old son has a great relationship with Michael too. Oh Lord, hold us all closely this night. Help us. Show us Your love, mercy, and grace. Guide us with wisdom. If it is Your will, heal my brother from the effects of this devastating stroke. Comfort him as he realizes all that has happened to him and show him hope, be real for him on his bed of sickness. He has reached out to you in his time of need. I am grateful for this and grateful that you are here with us. And thank you for the encouragement we find in Your Word:

¹⁶Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ¹⁷For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. ¹⁸So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (2 Corinthians 4)

In Jesus’ name I pray. Amen.

Six Common Misconceptions About The Chronically Ill

Published on April 22, 2014April 23, 2014 by Jesus is for the WoundedLeave a comment

A fast read on some things to keep in mind when interacting with a loved one battling an ongoing illness. Grace and mercy are helpful companions too. JJ

My Color Is Lyme

A friend of mine shared this today and it is right on the money!!!

psychology today article

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A Call to Build

Published on April 22, 2014April 22, 2014 by Jesus is for the Wounded2 Comments

The prophet Haggai in the Old Testament had to remind the nation of Israel that the current day was as good as any to rebuild the temple of the Lord. They were preoccupied with the day-to-day events of their lives, much like we have with some variations. These days we have Twitter updates flashing or beeping us the latest trivial matters we used to not care about to the stress of keeping up with the accelerating pace of life. It takes more effort than ever to SLOOOOOW DOWN and smell the roses.

Ooops! Did I fertilize them with Rose tone when I cut them down on Saturday? Shoot. I better fertilize the William Battin climbers now because they are growing and wait to feed the Knock Out rose bushes since they are still dormant . . . And off I go again . . .

When Pastor Paul Mowery preached on the book of Haggai recently he asked the congregation a question about the things we once promised the Lord. What did I feel led to do as a young Christian or during a time of spiritual growth that I am not doing today? What happened? Was the inspiration transformed into another purpose or forgotten altogether? Hmmmm. Even when facing times of crisis this is a question that benefits from our reflection. If all things work together for the good of those who are called according to His purpose (Romans 8:28) then it is possible to further our ministry purpose even in fast-paced or challenging times. And for most of us, these are challenging, fast-paced times!

Some of you know that my brother (Michael) had a stoke 9 days ago. Today Mike will be transferred from an acute cardiac/telemetry floor in a hospital to the rehabilitation unit. We are encouraged by this news! This means that he is stable enough to tolerate up to 3 hours of physical, occupational, and speech therapy per day in addition to having his funding issues largely resolved. (He does not have health insurance and is applying for the Medicaid Extension Program.) Mike continues on a “pureed diet” and “thickened liquids” (aka Pepsi!) with one-to-one feeding for swallowing safety. He has not moved his left arm or leg yet since the onset of the stroke one week ago. While his speech slowly improves, I understand that his mental status varies in the finer points of reality orientation testing. This has delayed the filing of his Power of Attorney for Healthcare status needed in case of an adverse event. And lastly, there’s a decision pending of whether or not he will have surgery to place stents in his carotid arteries: with high blood pressure, the occlusions were the cause of the right CVA. All-in-all, Mike is embarking on the next leg of a long journey of recovery; we are grateful that that next step is beginning today.

One of the most significant events from my visit to see him last Tuesday was his statement through garbled speech, “I need Jesus.” When he said that I was speechless myself. I was still responding to the horror of seeing my brother so severely disabled as he lain in bed with his waxy bed rest complexion, sunken left side of his face, catheter-and-wires attached to his skinny frame, and lifeless look in his eyes. I had to dash into the hallway as my eyes flooded with tears! The night before we travelled out of State to see him had been a nightmare anticipating that moment as it triggered residual grieving from the loss of my last grandparent, parents, and youngest brother over the previous 11 years. So the the next day in the midst of my own emotions, my dear brother reminded me of what was most important. Yes, “I need Jesus too.”

What Jesus has for Mike will of course be different from what He has for me. Our health challenges are different yet both bring significant physical weaknesses. The seizure attack episodes have increased to over 4 hours per day now with the worst ones occurring after waking up in the morning and after dark in the evening. I can do nothing but lie in bed and ride them out. I no longer can tolerate the high CBD hemp oil that gave me relief last month. It doesn’t work anymore anyways. Another medical doctor has set me adrift after only 2 months of working with him! Gratefully there is a Dr. in his practice (a biotoxin expert) with whom I am scheduled to follow-up with next week. Gratefully I have already completed the preliminary lab work she requires. In the meantime I have about 6 hours each day where I can function at a reduced level. And now in the face of my brother’s devastating stroke, I see how very fortunate I am. I am optimistic for a full recovery from the biotoxin illness that I once thought was Lyme disease. Sometimes it takes 2 1/2 years to find the answers for which we seek, and for which the Lord may bring. It takes what it takes as I wait on the Lord. And in the meantime I have built a firm foundation in trusting Him through what ever may come. I didn’t say it was a perfect one! It is solid in Jesus Christ and His Word.

Mike is yet at the beginning of building his foundation. Indeed he will need Jesus to do the tasks ahead of him both for his own recovery and to be a wise steward of the love relationships in his life: that with his fiancé (Lisa) and Lisa’s son (Alex). Gilbert the dog should be fine. 🙂 I am sad that his journey looks insurmountable in the beginning. The obstacles appear tremendous in the humble opinion of an occupational therapist on a medical leave. All of my training is rushing forth wondering about the potential for new complications and very real permanent disability. I am going to need help lying all of that before the Great Physician for His wondrous omnipotence and care. With Jesus, all things are possible and Mike’s illness will not be wasted. Mike has professed faith in the Lord, Jesus Christ. The Lord will meet him on his bed of sickness and redeem it for His glory. In that we can be sure. (Psalm 41:3)

The call to build can be a frightful one in our own strength. I submit to you that we cannot build anything of lasting value in our own strength. The outward man and the trappings of the stuff of his life will fade away in due time. Only things rendered unto the Lord and completed with His leading will last. Yes, Mike’s call to rebuild his body begins today with a transfer to the rehabilitation floor of the hospital. My own call to rebuild comes with revisiting the biotoxin protocol I discovered over 2 years ago. He and I are like every one of us who faces the question of what will consume our time, energy, and talents in the next 18 waking hours let alone the rest of our lives. So what will we do with our discretionary resources? How much discretionary resource does each one of us really have? And are we spending it for what will last or for what is, in the end, meaningless dust in the wind?

As for me, I know that I am called to write about my experiences within the context of the will of the Father in my life. Writing poetry was my outlet ten years ago when I could hardly write a complete sentence due to my emotional pain. Today I leave you with the words of the second wisest man (King Solomon) to ever live after Jesus Christ. I left these words in Mike’s room in scripted on a tiny plaque that encouraged me so long ago when faced with the task of rebuilding my life. May they encourage you too, Gentle Reader. Let us both begin to gather ourselves that which is needed to build something of lasting significance, beginning today.