Recovery from Serious Illness: Lyme, CIRS, & More – Page 108

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?

The Moments that Define

Published on December 30, 2013January 1, 2014 by Jesus is for the WoundedLeave a comment

When you get up and cook for guests before your treatment and post-treatment nap, you know who you are.

When a moment of intimacy is not as much about you but about pleasing the one you love, you have decided how you will be.

The clock means nothing late at night when it’s time to pour out your heart as it comes alive at last.

The Bible app becomes a good reason to keep one’s head buried in that 3 x 4 inch techno time-sapper again.

A can of chicken is your main entrée when the guests dine on carbs and foods that would make your head explode.

All you can do is all you can do then you clean up the kitchen and make your husband’s lunch anyways.

You know that nothing is possible in your own strength and that the Lord is carrying you, sustaining you once again.

Tis then you know the moments that define bring glory to the One who holds your dreams in His heart until you are united again.

Today

Published on December 30, 2013 by Jesus is for the WoundedLeave a comment

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 . . .

Forbidden Fruit

Published on December 28, 2013December 28, 2013 by Jesus is for the Wounded1 Comment

It’s everywhere. I look in one area then into another and I cannot avoid seeing it. I go to the store and displays everywhere tempt my senses. I must be strong. I look forward as if I am wearing blinders (those “harness winkers” or leather patches that keep horses from looking to their peripheral vision) so I don’t stray from my mission. The forbidden fruit beckons. “No!” I will not cave.

It’s not that I can do this in my own strength, by the way. The cravings are too great. Every cell in my body has probably been affected at some level since I’m without the glucose and carbohydrates that provide energy to battle the infection raging therein. Oh you thought I was writing about something sinister, didn’t you? Nope. It’s an elusive fungus, partially protected in a mucous-y biofilm but not sinister per se. It is CANDIDA! And at level 3 of 4 levels, gut yeast is hurting me badly. The “forbidden fruit” includes actual fruit plus food containing any form of sugar plus any simple carbohydrate or starchy vegetable. This includes all grains, even the gluten-free kind. Now even several months into this this extreme diet I have yet to see the endpoint.

Now let’s add another layer: any food that is fermented, aged, seasoned with just about anything but salt, or at risk for trace amounts of mold! Evidently even walnuts and pecans can harbor mold in the folded areas of the nut itself. Leftovers in the frig for more than 24-hours can harbor mold. Black pepper can harbor mold. And the list goes on. Tonight I decided to sacrifice some more seasonings to try to prevent the side effects of consuming the wrong foodstuffs. The consequences have been severe: three and one-half hours of seizure attacks plus hours of recovery yesterday convinced me of the need for some more tweaking. I also stopped one of the medications that feels like it’s killing me. When a pathologist stated online that seizures change the matrix of the brain, well that woke me up again to the seriousness of this battle. Seizures can be a part of a level 3 Candida infection. Geez. And most people associate yeast with vaginitis. That was a cakewalk compared to where I am these days.

Yes, this is tough stuff. Yes, it takes total discipline, focus, endurance, and patience with the repeated setbacks. Chronic illness requires grace from one’s family, especially one’s spouse. I am grateful for a loving husband who relies more on the Lord for his happiness and peace than on me. He sees things from a hopeful place and speaks to the little improvements or the sweet moments between us no matter how small. His God-given strength is very humbling. The only way we are able to endure this is through the love of our Lord, Jesus Christ and the leading of the Holy Spirit. We believe that this is the Lord’s plan for our lives and that He is here with us no matter what happens. And if it is His will, I will be well someday. I will be able to put to use that awesome carbon fiber canoe paddle Steve bought me for Christmas! Such a gift of confidence from my beloved. I love my man!

The forbidden fruit of today have become the hedges of protection I need to keep me from getting worse. Just like the corrective events of life (those we bring upon ourselves from our own mistakes and those the Lord allows for His Divine purposes), they are not to be hated, feared, avoided, or teased. We must face that which is forbidden and directly choose otherwise, place a barrier (physical or mental) in the way of temptation, and simply go forth on a different path that leads to victory. Nothing else will do if we want to win. I did not dink around with my diet at all during Christmas and I still was very sick. Imagine if I had “cheated” on my survival diet. I would have not been able to visit with family for three consecutive days, cook for several hours at a time, and enjoy a delightful time of fellowship. Sure I “crashed and burned” around 8:00 p.m. each night. The sacrifice was worth the reward that was available to me. The reward was greater this year than last year at Christmastime. That’s cool.

From here the journey ahead is unclear. I will continue the treatment approaches I have described above yet do not know yet if any new medical approaches are warranted. I have an upcoming appointment with my Lyme and mold-literate medical doctor where we will review the difficulties I have had functioning these past two years. There’s another functional medicine clinic of interest that is 3-hours away . . . We sure will be praying for direction about all of this in the new year. Wherever the path leads I know the Lord is already there. I welcome His plan for my life that has created more joy than I ever could have imagined on my own. If that joy must come through serious illness then I would not want it any other way. Really. I’m just believing what He tells me, you know. Picture me and Steve in an outrigger canoe along a sandy beach somewhere warm . . . Yes, I can picture it . . .