occupational therapist – Page 3 – Jesus is for the Wounded

Recovery is a jagged line

Published on March 2, 2014March 21, 2014 by Jesus is for the Wounded1 Comment

Today my words came back to me. My beloved Steve was comforting with his encouragement that there can be many setbacks even when on the road to recovery. Ah yes. The old, “recovery is a jagged line” speech. I have let those words fly many times when working with my patients as an occupational therapist. There was the cardiac patient who was frustrated with having to restrict his activity level to basically mope-ing around the house for his first week home from the hospital. I also recall a lady practically quarantined in a back bedroom of her home with a great view of the surrounding woodlands. She had a portable refrigerator, phone, laptop, accessible bathroom, hospital bed, wheelchair, walker and many conveniences to help her recover from a knee replacement surgery. I had to encourage her to push up her jagged line a bit lest she become too comfortable in her hospital room at home!

One of the many reasons I enjoyed working in home health care was the ability to use the person’s real-life situations, supplies, and responsibilities as part of his or her occupational therapy. The role of an O.T. is to evaluate the daily activities of an individual and the skills needed to complete those activities. When there is a breakdown due to an illness, surgery, mental health problem, developmental delay, disability, or disease process, the O.T. works with the patient and his or her resources to restore function. I was always amazed at how “resourceful” some patients could be! I think the farmers were the best. I’ll never forget the industrious wife of a patient suffering after several failed back surgeries. The lady of the house had built from scrap wood a rolling cart with a seat on top and rope attached to move it along the floors in her home. What was she moving? Well her husband of course! He was eligible for a wheelchair rental but evidently the subject never came up. I don’t think they even wanted one when it became available. The downside: the gentleman would not likely become independent in household mobility and related activities when sitting on a cart that had to be pulled by others. Recovery is sometimes a flat line too: no true recovery at all.

As for me, the recovery is moving forward. I am 12 days into using high CBD hemp oil to attempt to control daily seizure-like tic episodes. Today I had a setback for about 2 hours but at least the episode was low grade without a severe neck headache or pain. And when night time rolled around to my bewitching hours of 9-11:00 p.m. there were pre-tic symptoms and nothing else. This is the second night in a row with relief! Every night prior to this and for the past 8 months I have had 2-4 hours of intermittent seizures. Virtually every day or night for the past 2-1/2 years I have had intermittent waking seizures. Praise the Lord, the pattern is changing! At either set intervals or when noxious symptoms start I take a full or partial dose of high CBD hemp oil and get relief. Nothing has ever done this before!

It’s not like I haven’t prayed, submitted, waited, or tried more diets/supplements/drugs/manual therapies/technologies/chiropractors/testing/remediation than, as they used to say, “Carter has got pills!” I am actually still preparing to see methylation and biotoxin illness specialists in Michigan later this month. It is likely that the cause of illness is related more to exposure to biotoxins than Lyme disease. All that may be clearer sometime down the road. At this time my husband and I are rejoicing for the relief from our hellish nights. He just might start getting a full night of sleep before too long! That is if we don’t stay up for other reasons . . . ;J

If you are curious about high CBD hemp oil then I offer this informational website: www.mycbdresearch.com and join the discussion on Facebook at: www.facebook.com/CBDhempandseizures There’s hope here for many with seizures and other neurological, intractable health conditions. For all of us there is one ultimate source of hope that will sustain us whether recovery is a straight, jagged, or invisible line: a relationship with the Lord, Jesus Christ. To find Him we only need to get on our knees and open our hearts to His enduring love, His love letters to each of us in the Bible. I would have never made it this far without my Jesus. I am humbled and grateful for many aspects of these past 2 1/2 years: I’m working on accepting the wretched parts.

Meeting you, Gentle Reader, along the way is a sweet gift. Thank you for being a part of my recovery too. JJ

And in the meantime . . .

Published on February 13, 2014February 14, 2014 by Jesus is for the Wounded2 Comments

November 20, 2011 around noon. I was alone when my body began shaking uncontrollably. I was having difficulty thinking clearly and my speech was strained. All kinds of fearful, crazy thoughts ran through my mind including blaming myself for what was happening! It was the day after travelling about 16 hours to see family out of State and my husband had gotten up early after just a few hours of sleep to go to church and out to lunch with everyone. Having never fully recovered from viral hepatitis 1 1/2 months earlier and somehow surviving the extended car ride, there just wasn’t any strength left to get up in the morning and join them. Now I was immobilized and terrified of what was happening to me. Somehow I figured out that low blood sugar was worsening the symptoms. Finally I figured out that I needed to call Steve: he could bring home a take-out lunch for me from the restaurant and I would hang on until he got home. The only problems is that everyone was stuck on the other side of town anyways, with the drawbridge up that connected the roads between us! Flash forward about two hours and the episode was over. I fell into a fit full sleep and showered much later that day, pretty beat up from everything and quite embarrassed too. What had happened to me?

April 15, 2012 at 3:00 a.m. I awakened on my birthday with a nightmare and unusual shaking. The nightmare wouldn’t stop even though I was awake, whether or not my eyes are closed. I remained awake a long time, unable to fall back asleep. This incident occurred nine days after beginning to use a Rife machine, six days per week. (A Rife machine generates wavelengths of light and sound in program sequences designed to match the vibrational frequencies of various tissues and organisms in the body.) Treatment for Lyme disease had begun in January with a 5-week course of antibiotics then continued with Rife treatments late in March when I could not tolerate the antibiotics.

April 18, 2012 at 9:20 a.m. After running 15 minutes of various Rife programs, I was shivering uncontrollably. My hands and feet felt extremely cold. Fatigue overtook me and I napped almost two hours. I woke up feeling somewhat rested until crashing after additional treatments including the beginning of a series of magnesium injections.

April 19, 2012 around 5:20 p.m. I am suddenly awakened from a post-Rife treatment nap with the barking of our dog. I am unable to move for almost 30 minutes. My mind is dull yet rested until the second Rife treatment two hours later when I felt depleted once again. I learned that this can be a typical response to various treatments for Lyme disease and is often called a herxheimer reaction.

April 21, 2012 around 3:30 p.m. From my treatment journal I note, “moderate then moderately severe tics as I went to take a nap. Cast out with calling out the name of Jesus. Calmed. Re-started. Called out 2-3 more times and stopped.” A two and one-half hour nap followed shortly thereafter! Napping became my pattern after running Rife programs; my days were consumed with managing all the aspects of treatment.

The attacks of tic episodes continued every other day or so, mixed with nightmares most every day through the rest of the month of April. Beginning May 5th, the low grade and severe tic episodes ramped up to virtually every day. Most often they occurred when falling asleep after a Rife treatment or when trying to fall asleep at night. The first extended episode that appeared to be a full-blown waking seizure was on May 12th after a nap. It lasted 1 1/2 hours! I struggled to keep myself from hyperventilating or stop breathing altogether. Talking or voluntary movement were extremely difficult and made the attacks worse when attempted. I cried! My body temperature dropped and both thirst and hunger pangs increased dramatically. I was miserable, exhausted, and terrified all at the same time. While the nightmares would continue most days for another two weeks, they generally ended and recurred occasionally when taking a new medication or supplement.

Flash forward one year. We remediated our home for mold early in 2013 and both my medication and supplement regimes had changed many times. The seizure attack episodes increased to a couple of hours on a daily basis with some patterning in addition to after exposure to noxious stimuli. I stopped attending worship services at our church since it is a water-damaged building with mold. A recurrent urinary tract infection required treatment with a series of different antibiotics. The seizure attack episodes escalated into convulsions 1-2 hours after taking an antibiotic. My world continued crashing in on me as I began reacting to more and more foods, supplements, and types of noxious stimuli including loud music and bright lights. The tic and seizure attacks ramped up in the summer of 2013 to 3-4 times per day for a total of four hours per day and continued at this level for the next EIGHT MONTHS UNTIL JANUARY OF 2014.

In January of 2014 I was very beat up from the wretched seizure-like episodes. Remarkably they generally decreased to three hours-per-day in February after a series of extremely strict dietary regimes: a stricter, no-low-starch-veggie-Candida diet; Candida and mold-free diet; Candida, mold-free, and low sulfur diet; and finally where I am right now: Candida, mold-free, and low oxalate diet. I have religiously documented my treatment protocols and responses to them, tracked trends, consulted with neurologists & a pulmonologist, networked in numerous online forums and support groups, and researched every angle of this illness to no avail. Overall these days, this sickness is looking more like a biotoxin illness than Lyme Disease as evidenced by some genetic testing of late.

As of February 2014, some improvements have come including being better able to stay asleep and having stronger nails! My hair is thinner and so am I! However, I am largely deconditioned from intolerance to a full daily schedule of activities including exercise; headaches, global pain, ringing in my ears, and more have worsened. I haven’t worked in two years and am homebound much of the week. Concentrating on my hobby jewelry business is extremely difficult. Somehow I have still continued to blog and am grateful for a two-week improvement in my cognition long enough in October to publish my eBook: Hope Beyond Lyme: The First Year. I am grateful for all of the wonderful fellow sojourners I have met these past 2 1/2 years and have made some new friends too. When I see that a non-believer has read this blog, my spirit soars to think maybe the Lord is using my trials to reach others with hope for His glory! To see the Lord, Jesus Christ, as my sustaining grace and a source of hope for enduring the trials of this life makes this blog more than a journal and for that I am humbled, grateful.

And in the meantime . . . I am ready for the seizure-attacks to stop, of course! My neck is killing me from all of the thrashing about you know! I grieve the loss of time, the thousands of dollars, the stress, the isolation, and the strain on my beloved Steve. Will I become disabled or return to work? There is only One who knows the answers to that question and another big one, “why?” Gentle Reader, if you have read this blog before, you know what I am about to write here: it’s o.k. I’m going to trust the lover of my soul anyways, no matter what happens. I may try another treatment approach before I can see the doctors in a new clinic up in Michigan next month. High CBD hemp oil (legal in all 50 States) has been shown to work well for both children and adults with seizures and who knows, it just might help me too. However, I have been down this road of hoping for a cure before, only to have things worsen. Yeah, supreme bummer for sure. Sigh. It takes what it takes. Sometimes we wait and sometimes we go backwards. If the Lord leads me to some new information and gives me the ability to search it out . . . if my husband agrees . . . if the resources present themselves . . . and if there are no barriers after prayer and sleeping on it . . . sure, Ima gonna try it.

So when it works, Lord willing, you can join me in rejoicing for having hung in there with me along the twists and turns of this difficult journey. I hope I remember to lean on the Lord when times are good as well as when they are bad. Please help me keep my Jesus in front of me as He goes before me each day. Now let’s all get ready for some good news, k!

The whole chicken or egg dilemma

Published on January 31, 2014January 31, 2014 by Jesus is for the Wounded2 Comments

Sometimes in life things do not occur in any sane, logical order. Well after the original Creation of all things, that is! Before Creation there was only God and we came with His speaking into existence time, space, the earth, and so on. All I can say is that after I was born a lot of things happened in a fairly reasonable sequence. However after I became an adult that all changed!

I started my career, graduated with a Masters degree, and was married 12 years without ever having had any children. I see now the paradoxical blessing of never having had a family as a young woman; it just didn’t make sense why this happened as the years went on until more recently. It was the Lord’s plan for my life. Regardless I now have had the privilege of “adopting” my intended beloved husband’s grandson this past year and it is GRAND! I love it! Sitting here in the great State of Indiana following the stream of photos on Facebook of little Jackson and his parents in North Carolina is the new replacement for dinner-with-the-family on Sunday afternoons. Well o.k. Works for me.

Ah yes, work. I began my career as an occupational therapist, dabbled in worker’s compensation insurance, ventured into a home business three times (where I continue now as a hobby), bounced back after a few orthopedic injuries, and landed in an extended medical leave two years ago. I would have thought that I would be more vulnerable to such a serious illness when undergoing some of the more significant and stressful transitions in my life but it didn’t happen that way. Illness came when I was happily married, living closer to my hometown of Detroit, Michigan, secure in my relationship with the Lord, and largely homebound in a pretty place with a cool dog too. I have never felt more loved and it came after age 47, not as a baby girl. Works for me.

And there it is again. Work. My training as an occupational therapist brings a fascination with all things “work:” from the menial tasks of housekeeping to the time-and-motion requirements of an assembly line worker. I am amazed at the inner workings and outer performance capabilities of the human frame in addition to our ability to love, to hate, to dream. Later in life I would also come to know the Creator of mankind as my Lord and Savior, Jesus Christ: the One who made me and you in His image. Oh how lovely He must be for all of us to be a copy of His humanity! My life has been a wacky journey of discovery for all that He has made and gifted me to be; my weaknesses in addition to my strengths are crafted at His hand, in His time. This brings me to the current day.

I received a job notification from a prominent continuing education company for a part time Lead Occupational Therapy Education Planner. Wow, that sounds cool! The Planner would assist in the development and promotion of continuing education courses for occupational therapists and occupational therapy assistants nationwide. I have spent my entire career continuing my love for learning as I moved from one specialty area to another, adapting from one work setting and set of skills to another. Then when illness struck and continued into the year 2012, the Lord guided me into an online jewelry business. I knew very little about ecommerce at the time! Within a year I am grateful to report that I had customers from most sections of the United States and had learned a variety of jewelry-making techniques. I could adapt my creative schedule any time of day or night. And the marketing and writing skills of previous endeavors got applied and developed further, including photography and the use of social media.

Even with all of that, my greatest joy lies right here with you. This blog has received my heart, my hopes, my fears, my dreams, my failures, and my successes too. You have been there for me, Gentle Reader, through yet another transition in my life. I have recently doubted my ability to return to gainful employment due to the nature of the illness in my life. And yet the skills of reading, writing, creating, and social networking have grown despite any hardship. So I applied for the position! I included the online business, eBook, and this blog as accomplishments of late. It’s just like an occupational therapist to examine the skills needed to get through the day and a person’s ability to match it to what is needed in his or her life. This is exactly what I have done these past 2 years and in considering this new venture.

Thank you, Lord, for creating me as an occupational therapist. You knew the skills I would need to navigate the events of my life and breathed the seeds of them into me decades ago. And if it is your will that I move forward with gainful employment with this new company, then I am ready for this challenge. I don’t need to know if it’s the right timing, if I need to do something else first as in the chicken or egg dilemma. I’ll just trust you with all of the details. How timely that earlier today I was talking with a friend about her preparation and experiences attempting to return to work after a personal leave of absence. I place both of us at your throne of grace that your wisdom and strength would infill both of us for the opportunities that lie ahead. In Jesus’ name I pray. Amen. JJ

Where have I gone?

Published on January 1, 2014January 1, 2014 by Jesus is for the Wounded3 Comments

Sometimes I just don’t recognize myself anymore. I have used many words for myself such as Julie Anne, Recovering Type A, Recovering Catholic, Adult Child of an Alcoholic, Jul, Child of the King, Snookums, Just Julie, and Booberry. Many other labels inside my head will not make it to this blog as they are unkind and reflect the stinking thinking that was an outcome of my childhood. While I have come a long way there is still so much to do!

My biggest challenge these days is having some kind of identity when my world is smaller; there is less going on. I am sick a lot of the time. I am isolated most days. I go fewer places, see fewer people, engage in fewer activities, and generally do less than at any other time in my life for longer than any other time in my life. Whilst engaging in various activities a person engages in various roles that comprise one’s identity, for example: friend, church goer, Master Gardener, sister, sister in Christ, kayaker, exercise enthusiast, and so on. All of the roles that I have mentioned have severely diminished for me in the past 2 years because of a serious illness. I do not know when this will change. The tendency is to ask the question, “where have I gone?”

I really miss my life before illness. Sure it wasn’t perfect. I still had chronic pain, went to the doctor and had some type of treatment for pain a couple of times per month, and limited my work schedule to a maximum of 30 hours per week. But I was also the most physically fit I had been in my entire life, had the greatest financial freedom that I have ever had, enjoyed rewarding work as an occupational therapist with a flexible schedule, and went to lots of neat places with my amazing husband. My mind was sharp, my confidence was growing, and I felt really loved. Things are more mushy now. Most of the time I feel lost. I am not even convinced I have the correct diagnosis or treatment plan. So this translates into the reality that I don’t really know when I will be well again. This is tough stuff indeed.

And yet there are many new activities that have emerged these past two years. While I don’t work in all-things-gardening as much, I did become an Advanced Master Gardener AFTER I got sick. That was an amazing and humbling accomplishment! The Lord gave me the opportunity to explore blogging, learn more about social media, publish an eBook (Hope Beyond Lyme: The First Year), learn to make macramé jewelry, and launch an online jewelry business (Trinity Jewelry by Design). I’ve made some amazing friends via a local Lyme Support Group in addition to some compassionate folks online. I have kept a journal for most of my life and now my blog has a growing list of really cool followers from around the world. Talk about humbling! Wow. If only you could see my heart right now, transforming from an identity crisis between the lines of this blog tonight to a woman with a vision. You do that for me, Gentle Reader, guided by the Holy Spirit. Thank you for listening as this gets worked out within me . . .

If we were to examine the experiences of my life, we would probably agree that I have had a life that has been harder than most. Over and over again I have had to find Little Julie then Jul and Just Julie amidst a firestorm of hurt, loss, and strife. I have come to understand that the Lord has had His guiding hand, loving arms, and protective wing around me all along where the good people and perks of life were missing. He has allowed the trials and tears to bring me closer to Himself, to help me to see beyond the circumstances around me. The Lord has shown me that the bad stuff was not wasted or intended to hurt me. The Lord wants me to be complete and allows all this to conform me into the image of Christ. I pray that I will not lose heart during the refiner’s fire. I pray that I will see His blessings soon as I have seen so many times in the past. I just gotta hang on a little longer, let Him carry me a little more.

Where have I gone? I am in another wilderness experience like Moses and the Israelites of the Old Testament who wandered in the hot, dry desert for decades wondering if they would ever be “there yet.” I must keep my eyes on Jesus: the light that leads and the cloud that blots out the forces of evil that taunt my doubts, fester my feelings of inadequacy. It just doesn’t matter anymore where I have gone. What matters now is where am I going?

Happy new year, Gentle Reader. Will you go with Him too in 2014?

A New Project to Keep Me Sane

Published on December 29, 2013 by Jesus is for the WoundedLeave a comment

An idea for a new project has come to mind so when I’m not here, I’m brain-dumping in Microsoft Word. The topic: helping others with chronic illness with the day-to-day practical barriers to living.

My career in occupational therapy included evaluating the daily “occupations” in the lives of my patients and the skills he or she needed to get through the day. Occupations can include homemaking, pre-driving skills, functioning on the job, and more. When the person was unable to complete the steps, tasks, and activities needed to perform those daily occupations then O.T. was offered. Treatment began during an inpatient hospital or rehabilitation facility stay and continued in outpatient or home care therapy sessions. I have had the privilege of working in all of these settings. My favorite was always home care. When you are working with a patient in their own living situation, the evaluation is often more accurate and the remediation more meaningful. This was my part time work when I became sick on October 11, 2011. Within a few months I was unable to continue. Since then the remediation has focused on my own home and health!

I am grateful for my 30 years in occupational therapy practice. The Lord led me to a profession as a high school graduate that would provide a fulfilling career my entire adult life. I enjoyed serving others in both psychiatric and physical rehabilitation settings, with adolescents to older adults alike. I have been with a patient just moments before she passed away and another when he realized that his disabilities would be permanent. To look into the eyes of someone about to lose their independence because of his medical condition and another who needs a little nudge to realize she is ready to return to work are equally humbling experiences. And these days when I look into the mirror, I have some of those same discussions in mind as I consider the challenges of my own life these days. Gratefully, I have a rich variety of experiences and resources upon which to draw. In many ways I have not had to struggle as much as my patients because of my training as an OT.

For example, I intuitively know the importance of planning ahead in the evening for the next morning. If I wake up with seizure attacks and my husband is alone, I generally have a plan in place to meet my basic needs in case I would be unable to leave the bedroom. The night before, I usually pack a breakfast with my a.m. medications, enough water and food (following my special diet) to make it through the first part of the day. Low blood sugar can exacerbate my symptoms so this strategy has become one of numerous methods employed to cope with my limitations of late. I am grateful to the Lord for the skills He has giving me, His help in my time of need, and His leading me to a profession that has allowed me to cope through many trials in my life.

So why don’t I see what I can do to help others with this knowledge? When I did a preliminary search on coping strategies, I found a great deal of resources on the topics of emotional, psychological, and social skills for persons with chronic illness. This was a great discovery and I benefitted from reviewing these blogs, articles, book reviews, and so on. But where were the day-to-day strategies for example, in preventing falls when dizzy because of a medication side effect? In my role as an OT, I could point to many disease-specific organizations that might have such resources, for example the Alzheimer’s Association or Multiple Sclerosis Society. This information is also easy to find within the disability community. But what about a person with Lyme disease? Sick building syndrome? A temporary illness? Persons with a serious, multi-diagnosis, ongoing illness numbers in the hundreds of thousands or more. I see them on Facebook forums, WebMD, and the like. I would like them to know that there are simple strategies to reduce their daily struggles, improve their ability to function, and in doing so also keep myself sane while on the path to healing.

We have a saying within the therapy profession that goes like this, “therapist, heal thyself.” While this is not entirely true, certainly a therapist can do pretty well at rallying some resources to get the healing process going. My hope is that by sharing some practical information with others I will not only keep myself sane as I write but also gear myself up for returning to a productive life someday soon. The complications of my own illness make it difficult to concentrate, use various thinking skills after several episodes per day. The challenge of writing, editing, researching, and publishing my first eBook did help fire some neurons in a meaningful sequence here and there! I’m thinking I’ll try it again.

If this resonates with you, please let me know what you would like to see in such a handbook. The current outline begins with the morning of a typical day and continues through all of the activities of daily living until bedtime. I will include information on fall and injury prevention with references for sample adaptive equipment, such as a sliding tub transfer bench or automatic night lights. Many of us will be familiar with parts of the information. My hope is that by systematically reviewing a person’s typical home environment that there will be new insights: a little something for everyone and his or her caregivers. I have seen the power of a simple strategy in making the day a little brighter in the life of a person battling a serious illness. Maybe this will even lead to a forum where there will be an exchange of information as well. I am looking forward to the possibilities . . .