Thought I would post some updates from my latest creative endeavors. It’s taken over a year to develop my creative style of macramé jewelry: a hobby that has helped keep me sane in addition to my new eBook. Here are some pics to share where I’ve landed with my new macramé wrap bracelets, and more. If you would like more information, click on the “Etsy” square in the right hand column or follow this link: Trinity Jewelry by Design. Enjoy! Just Julie
Sometimes I simply take for granted the skills I have as an occupational therapist, even when this OT is on an extended medical leave. Allow me to explain . . .
The writing was on the paneled walls metaphorically today when an appointment for a medical evaluation by a new doctor turned out to be in a water-damaged building (WDB). I had a bad feeling when I noted the address of his office: in an older part of town with offices that were probably built at least 25 years ago. I knew that another building down the street was flooded during a bad storm last year so it seemed possible that this building could be: 1) older, 2) a WDB, and 3) laden with automatic air fresheners to attempt to cover up any residual odors! What I did not count on was the receptionist/medical assistant wearing perfume as well!
The scent of Dollar Store air freshener greeted me inside the glass doors of the 70’s style concrete medical office. The scent was even more concentrated in the tiny office of Dr. O. I had barely finished the new patient paperwork when the neurological symptoms hit. Oh boy, here we go again! I looked up and saw water stains on one of the grayscale ceiling tiles; there was at least one water stained tile in each room I entered this afternoon. The medical assistant received my completed paperwork and took me back to the patient screening room. No sooner had I stated my usual precautionary mantra of what to do/not to do if in case of “neuromuscular events” before the random fireworks of tic attacks began.
I aced the eye exam and I was pleased. Steve and I have not had the funds of late to update our eye exams or corrective lenses for the past 2 years so it was good to know that perhaps not much had changed for me. Conversely, the nature of my Doctor visit was about to change drastically. The medical assistant (with great purple-striped fingernails) invited me to sit in the exam room and wait for Dr. O. As soon as she closed the door, my whole world began to rock-n-roll. Tic then seizure attacks are a real bear sitting up in a chair because of the whiplash effect on one’s neck. Everything from the spinal column outward stiffens and voluntary movement diminishes the longer and more frequent the attacks continue. Things were not looking good at all.
Dr. O entered the room and turned out to be true African instead of Indian as I had surmised by the spelling of his name. He asked, “why are you here?” I said I was there for a “medical evaluation.” He asked a couple more brief and concrete questions and my ability to respond quickly degraded as the seizure attacks became entrenched. Attempts to speak or move exacerbated the involuntary tremors and shaking; to try and tell him this while my face was becoming constricted and torso was pulling forward in a writhing, flexed posture was quite a challenge. “I need to stop the exam,” he announced rather emotionlessly. I encouraged him to wait a moment. He persisted with something about not being able to do his exam with “all this” going on. Yeah, I knew that but it was better that he said it and not me.
Two things happened next that amazed me. First and gratefully, the medical assistant and Dr. O realized that they needed to get me outside for some fresh air. They brought in a wheelchair and asked me to get into it. I replied that I could not move! Through extremely strained vocal cords, jaw, and body posturing I indicated that they would have to help me. The absolutely crazy part was discovering that they had no idea how to transfer a patient from a chair to a wheelchair! I guess I take basic skills like transfer technique for granted. It’s taught in 3-week Certified Nursing Assistant training classes and most workshops on back injuries. And yet there I was, an occupational therapist with 30 years of experience in a completely debilitated state, instructing 2 experienced healthcare professionals how to get me the heck out of that chair so I could get some fresh air. Eventually they realized they needed to lock the brakes, flip up the footrests, and so on. I just couldn’t utter all the details that were needed at the time ya know.
The second amazing thing was what happened next. Once outside and all the way through the ordeal I kept uttering apologies, thanking them for helping me, and trying to regain some type of control over my physical faculties to no avail. I simply had to wait it out and focus on just breathing. I let them know the latter. It was in the mid 90’s F outside and it felt great in the shade! Fresh air at last! At least the air was fresher outside than on the inside! The two healthcare professionals made a plan for what would happen next since they had other patients to see (but I did not see any in the waiting room) and could not leave me outside the building in a wheelchair alone. The sweet gal with the fingernails called my husband at work and he was now on his way to rescue me, take me home. However the plan also included transferring me from wheelchair into my truck so I could wait there and not in their wheelchair. Using the same ersatz technique, they moved me like a sack of potatoes into the elevated seat of the passenger seat of my truck, turned on the ignition and air conditioner, locked and closed the door, then retreated back to their office. Geez!
I gradually shifted my tender “sack of potatoes” body around to support my wrenched head and neck. The pain, the fatigue, the grief reaction, the embarrassment, the horror of it all began to sink in. I could barely move my arms to wipe the tears and snot running down my face. My central nervous system was still in “tic mode” so any efforts to move flared the remaining shakes. I wiped my face with my sleeve anyways. From here I simply had to ride out the rest of the storm until Steve arrived. Such is the very inconvenient hell of Chronic Inflammatory Response Illness. On 1 1/2 hours of sleep from the continuous tic attacks the night before and now after surviving a 3-hour ordeal at this ol’ medical office, my beloved found me an graciously took me home.
When I started writing this account of my day today, I intended to tell a really funny aspect of what had happened. I guess I needed to vent first. This was a very difficult experience as you might imagine. Probably the only good thing that will come out of it will be that there is absolutely no way that Doctor can say that this illness is all in my head after what he witnessed today. I’d experienced a couple of “MDs” lately who tried to suggest that these seizures are psychological. I was thoroughly disgusted! I’d have to be a real sicko to imitate over 200 episodes of wretched and painful pre-tics, tic attacks, seizure attacks, and convulsions in a recent 44 day period that I tracked for my medical record. Who would do that? The answer: no one. I must trust that Dr. O will write what he saw and nothing else. No “armchair psychiatry” welcome here please!
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Funny thing happened on the way back to my truck after a medical appointment today: I started to notice a host of crazy paradoxes despite my wretched situation that are quite humorous if I just changed my perspective a bit. Here’s where I’m going with this. Imagine these headlines for my story today:
Female medical center patient coaches physician and trusty assistant in wheelchair transfer technique to keep them from tangling her feet in the leg rests of the rolling and rickety wheelchair. It’s a good thing that she’s been working in rehabilitation 30 years, eh?
Compromised patient slumped in non-ambulatory state must get back into her mid-size king cab truck loaded with dirt from a garden dig earlier this Spring. She’s weak but her 2-ton truck is strong for sure.
Collapsed wifepoo recovers in her air-conditioned vehicle while her maximally machismo husband drives up to rescue her in his Dodge Magnum RT speed machine loaded with a 21-foot racing surf ski on his roof. The dude looks like he could fly the stud mobile into orbit and launch a Tomahawk missile into space from the heavy duty aluminum racks bracing the sleek white projectile. When she recovers, she and her co-pilot River Bear will fly shotgun in their 24-foot outrigger canoe on the roof one day soon. Story at 11.
Yeah, that’s more like it! What a way to get a story, eh?
I will never forget Julia. She had a petite frame, a blondish hue to her gray hair and a sweet disposition even with her eyes closed. She kept her eyes closed most of the time in those days. Oh what a sweet treasure it was when she would open her droopy eyelids, worn out from the years of looking at what simply did not matter anymore. When they did pop open, her eyes were as blue as that of a spritely, young thang yet their life was no longer shining through their looking glass anymore.
Julia let you know what she wanted by the gestures of her contracted and weakened frame. She held her arms in a flexed posture near to her chest and her legs were drawn up above the seat height of the modified geri chair upon which she sat, semi-reclined. I don’t even think that her feet touched the foot rests most of the time: pale pink padded foam to match the waterproof cover of the end-of-life bark-a-lounger in which she sat when out of bed. Julie must have weighed 90 pounds when I met her. She leaned to the right then to the left depending upon the position the Certified Nursing Assistants (CNAs) had plopped her in until nap time. The frail bird of a woman was transferred to bed each afternoon at least an hour after lunchtime, to prevent regurgitation you know. That is also when she would be checked to make sure her diaper was clean and dry. If not before her nap, the CNAs took care of her diaper change later for a total of about three times per day. To keep her “clean and dry” was the charge of the nursing staff of the long term care wing and staffing ratios made sure it that it probably did not happen any more than that for tender ladies like Julia who could not ask for more.
I met Julia while working as an occupational therapist in the rehabilitation unit of this long term care facility. Periodically we would receive referrals for residents whose MDS (government mandated) scores triggered a decline in the functioning of a resident, requiring a screening assessment from a member of the rehabilitation therapy team. This particular episode was likely triggered by weight loss which may indicate possible feeding issues. Or it may indicate improper positioning in the geri chair restricting swallowing, restricting nutritional intake. She was already seated at a “feeder” half-circle table in the occupational therapy clinic at mealtimes so I had seen her while I was eating my own lunch in an adjacent office. My role would now become evaluating all of the factors in her decline once the screening assessment triggered an order for an “occupational therapy evaluation” then treatment.
Residents such as Julia are very complex for the reasons that I have already stated. At some level, you must detach from the emotional impact of working with someone in the last stages of his or her life with advanced medical conditions and dementia. Then again, when I got to see those blue eyes meeting my own brown eyes for a brief moment in time, I knew that there was more than a long term resident in front of me. I was looking through those eyes to the heart of a woman who once was someone’s mother, another’s grandmother, a man’s darling and petite wife, and someone whom many once loved. I loved those connections when our eyes would meet!
I am grateful to say that I don’t think that I ever lost sight of these defining “occupational roles,” the presence of one of God’s children placed before me, when asked to evaluate and treat a person entrusted to my care. I am grateful for even the somewhat gross experience of feeding a shell of a person (which would have been required through the course of my intervention) even though she would likely spit up some of the pureed foods presented to her. She probably smelled rank at times after an episode of incontinence when she could not communicate her need to “use the ladies’ room” after dining with the other “feeders.” Arrrgh! How I hated that label!
I would have initiated taking Julia to her hospital bed with one of the aides and assisted with “toileting hygiene” even though it was a “feeding assessment” because that care became a part of my job description too: it would help me to evaluate Julia’s sitting balance/tolerance/posture, level of arousal with gross motor stimulation, righting and equilibrium reactions and more that influence a seated posture for the “activity of daily living” called eating. How better to evaluate someone than within a real-life activity than to transfer her onto a vinyl mat . . . smelling like feces? Helping Julia become “clean and dry” before the aides had time to do so after their smoke break always seemed noble as well . . .
Julia’s story had a sad ending. I watched her continue to decline long after our occupational therapy sessions and staff training were completed. Julia continued to require maximum assistance with feeding and eventually accepted less nourishment from the aides at mealtimes. An astute and skilled nurse who loved the patients in the long term care wing determined that Julia had a fecal impaction and notified the family. Julia had a “Do Not Resuscitate” order on her chart and the family were ready to let her go. Perhaps the heartache of seeing her endure this end stage of life was just too much for them to bear anymore? But the illness that resulted in her death was not a major medical event. It was a fecal impaction. The end of her life was gross and undignified. The gracious nurse personally assumed the responsibility of keeping Julia “clean and dry.” This time the toileting hygiene that was needed was in her mouth . . .
Perhaps you can imagine what I am describing here without having to write another word about it. Many who knew and cared for Julia were deeply grieved at her passing. To discuss her quality of life, the anguish of an end-of-life decision, or the crises of the skilled nursing industry is not the intent of this article. My intent is to tap into the compassion I once felt on a daily basis that brought gratitude for the opportunity I was given to serve others in their time of need. I did what I could, with what I had, to the best of my ability at that particular time in my life. Caring for others kept my mind clearer of the whining that can occur for my own limitations, unmet needs, illness, and sorrows. I don’t have that caregiver role right now. Even so, I will never forget my experience with Julia and it is good to remember her on a day like today.
No, the hope I had that my pattern of noxious symptoms was changing did not last for more than two days. Oh well. I thought about deleting the blog from August 2, 2013. If I had deleted it, I would have missed reaching deeper into my heart to find the memory of Julia who had taught me so much about life so many years ago. In the larger scheme of things, two days with a few hours of relief is barely enough time to do anything, experience anything of lasting significance anyways except maybe a trauma of some sort. I shall hold out my hope for two months!
In the meantime, I will open my brown eyes and see if I can find something else to focus on today. Six-thirty in the evening is a great time to take a shower in the “p.m. shift” of my daily schedule so I can present myself clean and . . . pretty for my husband when he returns home from more noble activities. It’s a lovely evening so maybe there is something I can do with it, even if it is sitting within view of the pretty gardens outside my window. Oh how I wish you could see them! There’s a hummingbird who is coming around a lot more now too. Very cool.
See there? I think I’ve landed in a better place after all. We are “there” and it is meaningful after all.
When the ravages of illness keeps me from working out, I hunt for alternatives to get my heart-a-pumping! I recognize that even when we are sick we must keep our bodies moving for the benefits of exercise we all know and to prevent further complications, such as blood clots from inactivity. This is a constant battle for me these days. How about you?
In times like these I am hoping that even walking the dog to the mailbox and back counts as physical exercise! Well, almost. Exercise at the moment sure takes on a different form, gets performed at different times, and gets done with different strategies fer shure! For example, twice this past week I got on our elliptical trainer for 10-15 minutes at 2 in the morning! It actually helped me to relax before bedtime and took the noxious symptoms down a notch that can be worse if I am stressed in any way. I am very grateful to have an elliptical trainer in my living room just for this purpose!
When I am able to do exercise with a little more intensity, I turn to my garden chores. Digging in the dirt burns tons of calories but more importantly, it becomes resistive exercise for my lower torso and “lifting” for my upper body as well. O.k. so I’m not recruiting all of the muscle fibers within the limited range of motion of scooping-and-throwing. I’m hoping that the diagonal axis of movement actually counts more than the up and down motion of most curls, presses, lunges, and squats? It’s more like a hybrid exercise that combines the core muscles, upper and lower extremities at the same time, right?
A gal has gotta do what she has gotta do for a time such as this. That goes for you guys too. If I have just enough energy on a Monday to lift some weights or re-dig a border around our pine tree, the pine tree is going to see me first! I just make sure that I use the best body mechanics I can muster during the job, like lifting with my legs, keeping the load close to my body, and so on. After all, I still am an occupational therapist deep down inside you know and this is the stuff I’ve been teaching patients for years. The stuff applies to me too and preventing injury is important now when I am more deconditioned than conditioned!
And when that extra measure of energy-grace appears, I do not need a reminder to get out the foam roll, 3-10 pound weights, theraband, weighted bar, or therapy ball. I still crave exercise! Gratefully I am able to place these exercise tools within reach in our living room for a quick few reps at, well, 2 in the morning! As long as it’s a shorter workout, those few reps still won’t keep me from going to sleep. By the way, like most folks battling Lyme Disease, it’s common to be nocturnal. The noxious symptoms are the lowest in the middle of the night so that ‘s the time I use to make jewelry for Trinity Jewelry by Design or get my office stuff done too.
I look forward to the time when I can have both a traditional schedule and a traditional work out routine. Just before my time of illness began on October 11, 2011, I was completing the Metabolic Effects (ME) workout DVD a few days per week, kayaking with my hubby, and our local recreational group and either going for long walks or riding my awesome, custom fitted hybrid, cross bike every week. I was at the highest level of strength, of fitness of my life at middle age. Wow. As I posted in a previous blog about returning to my prior level of fitness, I am Counting on Muscle Memory! Lord willing, I’ll get back there. Lord willing, I may even exceed my former level of fitness. And this is entirely possible if I have less chronic pain in the future. Wow. This hope actually keeps me going during the trials of “bothering” to recover from Lyme Disease and Chronic Inflammatory Response Syndrome. Someday I very likely could be older, wiser, and better than ever. Cool beans.
I am grateful to my step daughter-in-law, Kate Horney, for introducing me to a way of working out and of eating that has kept me from gaining weight during this time of illness. She probably didn’t know that I was tracking her work on Facebook, long before her successful fitness business. More on that in a moment. And when I would need to eliminate all forms of sugar in my diet due to Lyme Disease, because of my familiarity with what the ME folks call the fat-loss diet, the transition went smoothly. Again cool legumes, not beans!
While I had followed a “protein-fat-vegetable diet” many years ago to eradicate a candida infection, the process in the past was very difficult. I lost a lot of weight very quickly and was weak/shaky/miserable. Using the ME approach to exercise more recently actually helped control my cravings for carbohydrates because of the hormone-balancing effect of resistive exercise. This helped when I was exercising more two years ago and it helps now as well because I did not have to go through a rough transition again when eliminating simple carbs from my diet; they were already gone! I was also already gluten free as well. To be sugar and gluten-free are both are very helpful in battling Lyme Disease. The spirochete bacteria of primary Lyme seems to feed off of simple sugars; gluten-laden foods makes everything worse as it can increase inflammation in sensitive individuals. Wow again. It’s like the Lord was preparing me for victory two years ago!
For more information on Kate’s work I invite you to check out her website at: Beyond FitPhysiques. While her latest book is titled for new moms, I found that it contains incredible weight and fitness strategies that can help all of us ladies who have bodies in transition, hormones adjusting to illness or post-partum changes, and who need a boost to get back on track. Check out 101 Tips for Post-Natal Fitness and the Metabolic Effects Diet books by using the links under the NEW HOPE FITNESS RESOUCES in the right hand column of this blog.
Just writing this has energized me to do more than I thought I could do earlier today. Gee Kate, I hope washing the hardwood floors counts too?! :J
When someone says to me, “you look good today,” I’ve decided to simply take that as a compliment. The cynical alternative would be to question the intent of the person and wonder if he or she is thinking one of the phrases in the poster above. Is he or she wondering if I am really sick if I am able fix my hair and wear make-up one day in the past week? No one sees me when I don’t feel well because I don’t leave the house! Oh well. As a friend of mine named Carol used to say, “it’s better to just leave it alone.”
When someone asks me if I’m back to work yet, I’ve decided to say that, “getting well is my full time job these days.” If the person probes further, I’ve decided to disclose that I spend 16 to 18 hours every day in health-related activities and appointments. That usually brings silence so I quickly change the subject to his or her job or other primary role in life. My husband advises me that people like to talk about themselves and usually have a great time with you if you ask a lot of questions about them. I do enjoy getting to know others so his approach works well.
When someone asks me how I am feeling, I’ve learned that a quirky response such as, “below average,” “stable,” “not as well as I’d like to,” or “I’m having a better moment” works well. I rarely feel well (or if I feel better at the moment it is likely to change within the hour!) so it’s tough to give the truth: a negative litany of symptoms that has gone on for 1 1/2 years! This crap-ola-ski is likely to continue for awhile so I’m going to pace my answers. (I told you I’m Polish right?!) I appreciate the question, acknowledge it and turn my attention to the other person. It’s pretty clear when a person cares for more information and sweet when this happens.
When I do get to share a little more of my story, I try to end it with gratitude. There is always something for which I can be grateful, for which we all can be grateful. Today was a day that stunk until about 1:35 p.m. The noxious symptoms persisted without a logical reason even after a post-treatment nap plus an additional rest period. In the afternoon I moved slowly into extensive amounts of cooking my special diet and cleaning up this or that. The sweats episodes did not diminish until later in the evening. I am however grateful for two cool things that happened today: 1) crafting an amazing baked lamb cabbage roll casserole (gluten/sugar/dairy/chemical free as well!) and 2) completing the netting and support structure for the blackberry raised bed to keep out the birdie scavengers. Cool beans. Steve and I had a sweet evening together later after finishing our respective projects today. Thank you Jesus! Lord willing, I will worship His holy name tomorrow at church . . .
Recovery from a long-term illness thang isn’t for wimps you know! Most people give up, settle for less, walk away from their faith in anything or anyone, become bitter and isolated, or worse. I choose to trust that this journey will not be wasted, that the Lord will use it for His glory if I keep Him out front, and I exercise some care in my speech and behavior. Rejoice if you see me out working in my garden! I’m probably sweating bullets, nauseated, dehydrated, and weak but getting out into the world anyways. We all know what it is like to have to carry on with life when we simply don’t feel well, don’t feel like carrying on with life. I just get it more often! Eeek.
Ahhhh. That’s better. Happy Spring y’all.
Jesus is for the Wounded 
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