Elephant Man

So much has happened in the last 6 weeks that I had a hard time deciding what topic to cover first but I figure this is a good place to start.
I have been reminded of the movie The Elephant Man on several occasions this summer. There's that famous scene where he is chased through the railway station by a ignorant crowd and as he's cornered he calls out "I am not an animal". It serves to remind those present that his humanity is no less real because of his physical nature. My AFOs draw stares now and then when people see me in shorts. If I know the person I explain about the muscle weaknesses I have due to my Lyme; to others I just smile. My experiences don't even compare to what others with even greater need for adaptive devices must contend with. Education is the key here, just as it was/is in fighting other instances of discrimination based on physical appearance. I wish people would ask me anything about my health,I have lots of knowledge to share.

There was another thread running through the film that I now understand- the desire for the seemingly mundane. He dreamed of being included in the world outside the hospital, of having friends, of sleeping in a bed. I can really relate to the last one as I had a 2 week period where back spasms forced me to sleep in a recliner. How strange it felt to say good night to my husband and have him retire to our bedroom while I tried to sleep in the living room. After a week the chair was placed in our bedroom and going to sleep in that setting felt more natural to me. My husband is 6'6, moves around in his sleep and is slow to answer his pager but the desire to simply rest beside him was as strong as it had been when we were first married. With the hot weather I missed getting into the lake and cooling off. I couldn't swim or waterski in 2003 and 2004 but at least I could wade. That is not possible now because of my central line. We are getting our granddaughter accustomed to the water but I can't help. I wish I could. I also long to see a blue sky again. My color vision is changing as I have a central color scotoma that looks yellow against certain shades of green, yellow and blue. A bright sky now looks grey or steel grey to me. On cloudy days the ambient lighting looks like the color of the sky before a tornado. I have always reveled in nature's palette, especially at sunset, now those beautiful colors are diminished. I did see a retinal specialist who understood my description of the problem and testing suggests this is a cone problem and not a vascular problem with the macula- my overall vision is not threatened. I take comfort in his assessment but miss my colors all the same. Mundane experiences are elevated when they become inaccessible.
I remain hopeful that I'll regain much of what I've lost but it is equally important for me to hold on to the experiences I gained through my illness. Doing so will help me connect with others who face misunderstandings and losses brought on by illnesses/injuries beyond their control.

Inanition

Inanition, great word but a lousy state of mind to be stuck in. But that's exactly where I find myself. My illness has given me a great deal to consider and write about. I have always been a strong advocate for patients and there are a multitude of patient care issues that I could speak out about, and want to speak about, but often when I sit down to write I find the process too difficult and I end up playing computer bridge. My inaction can partially be explained by my inability to concentrate for prolonged periods. I can stay on task long enough to play a hand but not long enough to consider a medically related topic in detail. I know that I could write drafts or small segments of a larger piece in each sitting but I didn't work in that fashion in my former life so I find it hard to make the transition.
Right now my entire life is in transition. I am not the person I used to be and I doubt that my antibiotic therapy will bring me all the way back to my previous state. I am not yet sure where I'll end up and that keeps me from settling into my current life. I remain hopeful that I'll get back to the practice of medicine and thus it's hard to fully let go of my former patients. I continue to have concern for all of them and there are a few whose medical problems I am still trying to solve in my head. I enjoy visiting with my patients on the rare occasions when I'm out in town but those meetings are bittersweet. Everyone wants to know when I'll be back and I struggle to explain that I lack any true sense about my prognosis. At home I don't know whether to delay projects or hire them out or simply let them go. Such uncertainty is a marked change from my former self and not a welcome one.
There have been some positive changes. I clearly know the difference between important matters and the small stuff. Minor setbacks and obstacles don't bother me. Rarely will a situation or statement get a "rise" out of me. I am slower to anger or to make a judgment about another's motives. I am less critical, more patient, less argumentative, kinder.
I am waiting to see what I'll be like when my treatment is completed. I really enjoyed being the old me, I hope the new me will be a fun person to know.

Apprehension

Well, I made it through the weeks where I was on 2 gm of Rocephin daily and just finished my first pulse of Rocephin. A pulse consists of 2 gm twice daily for four consecutive days. I continue to have my rash despite running each dose in over two hours. I am certainly more tired and some of my old sensory changes are back/worse. My muscle weakness has progressed and my pain level is up. I dreaded having to deal with these problems and that's why I was apprehensive about moving forward with my treatment regimen. Yet, before starting antibiotics my Lyme infection was relentlessly depriving me of the very qualities that defined me so I knew, in almost an instinctual way, that I needed to press onward. My periods of confusion have significantly cleared and so have the episodes of diarrhea. I remind myself of these positive responses to the antibiotic and counsel patience when I grow frustrated with the slow pace of my recovery.
Physicians often note when patients appear apprehensive and at times we use apprehension as a diagnostic tool. Orthopedists know that people with recurrent shoulder dislocations will often look apprehensive when their arm is positioned in a manner similar to what caused the dislocation. Victims of various forms of abuse will become apprehensive when the examiner inquires about topics related to their trauma and that appearance can speak of their pain long before they can tell us about it. We note it in ourselves,too. It's present in the sweaty palms we experience when the fetal heart rate is too low and in our pressured speech when we're discussing a vexing case with a consultant who is 45 minutes away. It's the extra time we take before entering a room to reveal bad news to a patient.
Apprehension is a flashing warning light. It doesn't require us to stop in our tracks but does advise us to proceed with caution. I am moving ahead and hoping that the road isn't washed out.

"Do over"

I delayed today's dose for the last hour or so but now I'm plugged in and will soon know how I'm going to do on 2 grams of Rocephin daily. This kind of procrastination is unusual for me. I'm the type who sizes up a difficult situation and then proceeds to conquer it. I'm more inclined to jump than stand at the edge and fret about the fall. I don't mean to imply that this is the only way to approach such problems, it just happens to be my method of operation. That I've hesitated about the Rocephin says a great deal about my ambivalence. I want to get well but wish the price wasn't this high. Yesterday a friend said she hoped that my gains would be worth feeling lousy from the antibiotic. Well, there isn't much of a choice here; without the meds I would certainly get worse and there's no hope in that pathway. So I've jumped.
Right now I'm tempted to ask God for a "do over". I have always said that I haven't met a person that I would wish this ordeal on but lately I've been looking around for one. Lacking that fiend I wish this illness would be lifted from my shoulders. I'm sure other people have wished away their medical problems; doesn't work that way, bummer. As kids, my friends and I took our games seriously. Someone might get bad breaks but we reasoned that is simply how things go- tough luck. Rarely, someone would ask for a "do over". When that happened we would mentally weigh all of the variables and issue a decision. We were stern judges but not heartless and occasionally a "do over" was granted. If that happened to me now I would consider it a miracle. I believe in miracles but am not counting on one.
Lyme is making me tougher but not colder. When I return to my patients I'll have more compassion to offer an fewer medical absolutes. I will seek medical methods to grant more "do overs".

Listening

This is my last day at the 1 gram dose of Rocephin. Tomorrow I increase to 2 grams daily. I had been at that dose before and did not function or feel well, which frustrated me. I have always been a "doer". My leisure activities involved either physical endeavors or mental exercises. I am not one to "veg out". At 2 grams I had days where my only accomplishment was that I made it through the day. My son once asked how I spent my time. I was embarrassed to admit how little I did; my daily routine seemed so insignificant. From the outside it might have appeared that I was being lazy when, in reality, every day required all the energy I could muster. Impressions do not always reflect the truth.
Most people have an innate tendency to judge others yet those judgments are often based on incomplete facts and limited understanding. We would all be better served if we judged less and listened more.
This is especially true in medicine. As I searched for a diagnosis my medical records began to overshadow my oral history. Consultants were spending more time gathering information from my chart than from me. When I met Dr. Smith for the first time I was careful to bring only a few notes and the majority were from nonneurologists. This meant he had to listen to my telling of the story and not work from a second hand account. Having met him I feel sure that he would have done that anyway. Doctors tend to be "doers" and few view listening as an active process. Thus many rush through the history and move to the exam where the patient is passive and the physician is driving the process. Yet the best diagnosticians through the ages repeatedly stressed that a carefully gathered history more often leads to the correct diagnosis than an exam or battery of tests. Tests are meant to confirm diagnostic impressions, not to make the diagnosis. Yet contemporary medicine places undue emphasis on tests and technology and the public has bought into this philosophy (what work up is complete without a CT scan or MRI?). While both have lead to advances in medical evaluation and therapy they have not altered the fundamental problems that propel patients into physician offices. Illness and death persist despite our efforts. We should focus more energy on building relationships with our patients and to do that we need to listen more. True healing will flow from that bond even when cures are unattainable.
Here sits the "doer" extolling the virtues of listening and claiming it as a truly useful activity. I hope that tomorrow finds me able to listen to the lessons offered by my journey. I might gain insights that are worth passing on.

Setbacks

The month of May was lost to me in many ways. After the pneumothorax I did get out to Colorado to meet the specialist and begin treatment; a one week delay. When I got the Rocephin dose up to 2 grams a day I began to feel even worse than I had before antibiotics. On the fifth day at this dose I developed a body wide, nonitchy, red rash that would fade into purple color only to become red again. When the rash flared I generally felt lousy and I noted that my body felt like it was covered in "Icy-Hot" cream, inside and out. I had a follow up appointment with the specialist in 3 days so I decided to keep going but I couldn't get anything done beyond eating,doing minor paperwork tasks and playing computer games. More lost time.
At my visit it was decided that the worsening symptoms and rash reflected too rapid a kill-off of the spirochetes and I was told to go back to 1 gram a day for 2 weeks with a slower ramp up schedule. The Mepron was similarly cut back. I'm to hold off on the Zithromax and Flagyl for now. Yesterday was my first good day since that change and I'm grateful to be able to think again. I was also able to weed in the garden and do most of my rehab; this gives me a sense of accomplishment. I had hoped to be on full doses of the antibiotics by now but am a month behind, which is frustrating.
I remain hopeful for a future recovery and although treatment got off to a slow start I did pick up some new insights: #1) Complications can occur even under ideal circumstances and the physicians involved can be empathic without needing to apologize for the problem. #2) There are many benefits to being under the care of an experienced treating physician. Initially I wondered why my clinic couldn't mimic the treatment offered in Colorado. Ordering the meds isn't the issue; it's knowing when and how to alter the plan that distinguishes between cookbook approaches and the approach of an experience practitioner. Maybe when I'm better I can gain such experience but for now I would be more likely to harm than help someone with a borrelia related disease. #3)Keep you eye on the prize. At one point my symptoms were so intense that I doubted if I could deal with them on a day to day basis let alone a long term one. I had read that some patients abandon therapy because it made them feel worse even though doing so meant their symptoms would progress. I made the active decision to go forward with the antibiotics despite the side effects because to choose otherwise would lead to a certain decline in my capabilities with no hope of recovery. Having the support of my family and friends makes the tunnel less dark and I am confident that in time I'll see the light at the end of it (and not a bright light that I walk towards). #4) Laugh whenever you can,for in those moments pain and other uncomfortable stimuli cease to exist.
Goodbye May, hello June.

Starting Treatment

I met with the Lyme specialist on May 11 and began antibiotics that day. This represented a one week delay due to complications around my central line. The line was put in on May 3 and, unfortunately, the placement led to a collapsed lung. This is a known complication and while it was painful it didn't frighten me. I had a chest tube placed in the ER that night and was allowed to go home. I think I would have broken down and cried if I had been hospitalized. The tube came out on the 6th so I was able to fly to my rescheduled appointment in Colorado Springs the following week. The trip out exacerbated my symptoms of fatigue, weakness, pain and paresthesias. I would have had trouble getting there without Ralph, who did all of the planning, carrying and driving.
The Lyme specialist is a kind, experienced physician who understands Lyme from a professional and personal viewpoint. It's reassuring to discuss the unusual symptoms of this illness with someone who has lived through Lyme associated problems. After being burned so many times by my medical colleagues I know I would not have acknowledged all of my symptoms at the first visit with a doc who hadn't accumulated years of work in this area or who hadn't felt these things first hand. He is already in his mid60s and is willing to risk his career by offering aggressive treatment to patients with late Lyme, which he refers to as "borrelia associated diseases". In some states physicians have been brought before medical boards for taking this approach, which is not considered standard treatment. He was proactive in this regard by speaking to his state board about the rational behind his treatment program. The standard approach offers only 30 days of Rocephin for neuroborreliosis regardless of length of illness or severity of the disease. My reading suggests that this yields a improvement in symptoms rate around 63%, hardly a smashing success. In most bacterial infections we treat with the intention of a 100% cure rate. I have not seen an Infectious Disease article that justifies setting the bar so low. The ID guidelines talk about balancing risk of treatment against the illness related problems. In my case this is a no brainer- perhaps some changes in gut flora and possible gallbladder dysfunction is weighed against my current inability to work, think clearly all day long, be physically active. Not even a close trade off.
My new meds include Roceephin alternating with Flagyl for getting at both forms of the borrelia. I have Mepron and Zithromax for babesia (the latter needed prior approval). I take Actigall to prevent gallstones, Diflucan to prevent yeast overgrowth and acidophilus to maintain gut flora. I now have an underactive thyroid gland so Synthroid has been ordered. Before becoming ill I took preventive supplements like a multivit and calcium. Now I take 14 additional medications/supplements in an attempt to regain my health. No one can predict my outcome but I'm hopeful that I'll make substantial gains and to that end I'm willing to risk treatment related setbacks, swallow some pills and administer IV antibiotics. Anyone who knows me would be shocked if I made any other choice in this situation. I hope my insurance carrier sees things from my vantage point as that's one fight I'd like to avoid. My energy is limited and I don't want to use it in that arena when I need it for my "borrelia battles".