Only a Snapshot

Sometimes I feel selfish with my dream, a dream to thru-hike the Appalachian Trail. Who else is that dream for, other than me? How does it benefit anyone, but me? It isn't an altruistic dream; it is a me-dream. I have no lofty aspirations of serving others within that dream.

I have tried to justify that dream. After all, if the individual raises their own consciousness, doesn't that benefit her neighbor? Doesn't her influence in her tiny circle then cause ripples in the pond - tiny reservoirs helping the water tributary system, spawning life, replenishing the earth, supplying evaporation vessels which then supply sustaining rains?

Wouldn't thru-hiking the Appalachian Trail raise my consciousness? What of the people I meet along the trail, other hikers and backpackers? I don't think of them as having selfish dreams; why am I so important that I feel my dream has to be justifiably altruistic?

Are not all our human dreams selfish at some level? Maybe "selfish" isn't the right word, but most all our decisions are about the self.

It is not evil or wrong to desire more of life. The trail is more life to me. To have all I need on my back. To learn more deeply a respect and interdependence with nature, including humanity. Us humans are a part of nature, bipeds with thumbs.

The kinship that backpackers know in an instant - it is tangible, yet cannot be described with mere words.

Like love making or love longing or grief or jubilation or a myriad of other emotions and experiences. None can be described adequately with words. A reader of such words has to have done that, been there, in some sort of capacity in order to dive and know what the author endeavors to convey. Like a photograph which can never fully capture the expanse and depth and fullness of the valley, of the climb, of the precipice, of life.

Selfish or not, I long and dream to be among the trail with kinfolk.

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Damn straight I'm pissed, but I'm "well"

non-subject: into the flow
AWW, 5/01/13

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My mother's name was Flo.

I use the tense "was" because Mom is dead. But I feel strange using the term "was." She "is" still Flo Hamby. That will never change. There will never be another Flo Rae Drum Hamby. Yet, she now "is" a "was."

This past weekend, the last weekend of April, 2013, after hanging up the phone at the end of a conversation with my mother-in-law, I said to my husband, "I wish I wouldn't end up talking about my health. I don't like that I end up talking about it in conversations with people."

He responded calmly, "It's what you are going through. It's what is happening in your life. It's normal to discuss it."

Still, I don't like that I talk about it. Why can't I be the example of a deeply grateful individual that speaks no negatives, only gratitude in spite of life's onslaughts of hardships.

Today after Daniel saw both my wrists in support braces, he asked, "What happened? Was it dogs?"

"No," I responded, "It's a long story." We talked about something else until a bit later. I can't recall now if Daniel asked again or if I volunteered part of the recent medical nightmare I'd been through.

Daniel responded, "Have you ever studied Buddhism?"

"I've not studied it, but I'm familiar with it."

"I think it might help you," he replied.

I retorted something like, "Do you think I'm asking you for help?"

I've been angry the past couple months. Yesterday, I was clear about my anger. Today, the anger was muddled; it wasn't a healthy anger.

I feel I have to defend myself. Why do I feel that way and what do I need to defend against?

Maybe I'm most angry with myself for getting on the American medical merry-go-round. There is nothing merry about it.

Shouldn't I be thankful for the doctors? Doctors who have passed me around telling me all my tests are normal though clearly both my hands and both my feet and both my legs and both my arms aren't working properly.

Shouldn't I have gratitude for my general practitioner? The one that denied me the medication that gives me respite, a medication which is not addictive and instead prescribed Xanax. I then went online searching for hours for a reputable pharmacy from which to order my medication overseas even though I have 100% insurance coverage in the States. Insane.

Only God knows how many hours and days and months I've spent researching serum sickness the last two years trying to understand and find a remedy for this prolonged disability. But serum sickness should have cleared by now.

Yet, from May, 2011, through March, 2013, not one of the damn diagnosticians who call themselves doctors ever suggested I see a neurologist. I suggested it.

Shouldn't I be grateful for the one neuroloigist in April who drew nine vials of blood for labs and performed a nerve connectivity test and then gave me the results: "normal;" and then showed me the door because the tests trump my symptoms?

Shouldn't I just passively accept the verdict and continue to suffer and switch to ordering my medications from overseas? Of course not; that's insane too.

Since the neurologist and general practitioner nightmare two weeks ago, I've spent hours and days re-researching to figure out what is going on only to discover others with similar symptoms have been down similar paths of American medical doctor roulette; only to discover that I probably never had serum sickness but rather small fiber neuropathy; only to discover that with small fiber neuropathy all the typical neuropathy tests are normal, and in fact symptoms in spite of normal test results are a pretty sure sign that the diagnosis is small fiber neuropathy.

Why did the neurologist not look deeper?
What is my insurance paying for?
Instead of paying the merry-go-round operators, should it rather be paying me for my hours of research trying to figure out what's wrong with me?

You god damn diagnosticians! You aren't physicians or healers, you are technicians and you treat people like machines.

Damn straight I'm pissed.

Probably a better response when people ask, "How are you?" is "I'm well, though the definition of well can change on a daily basis."

[end rant]
***********

I need to get calm before my upcoming appointment next week with a new neurologist.

Universe...I'm doing the best I can with what I've got.
Your law is abundance; it's everywhere.
Your law is balance; I want mine back if possible.

Maybe for the rest of my life I'll have to stop at each stair case and get my footing before taking a step.
Maybe I'll have to use two hands to pick up the coffee cup.
Maybe I'll have to ask for assistance to open the water bottle or certain doorknobs.
Maybe someone else will have to cut the vegetables.
I will accept those, if it must be.

But, I do no have to accept being treated like a machine.

Universe, I know there are good doctors out there. I simply request an entrance.

***********

Diagnosticians

Perhaps a better word for modern doctors is diagnosticians.

When my car is broken, I take it to a mechanic. She or he runs tests to diagnose the problem and prescribe a fix. Sometimes the problem can't be found, or the symptom (that knocking noise) doesn't happen while the patient (car) is at the repair man and I'm told to bring it back at the moment it is happening if I can.

I take my car to the mechanic because I don't have the expertise to diagnose the problem and I don't want to take the time to read a manual and figure it out.

I do the same when I go to anyone of expertise, including medical doctors. That is what I am paying for - their knowledge and expertise.

I know doctors don't know everything. I don't expect that. But neither do I expect that I will have to do in-depth research on my own to try and figure out my diagnosis. Plus, when one is ill, one's energy is used up in just functioning every day - going to work, eating, dressing, bathing. Fatigue makes researching one's ailments difficult, to say the least.

In July, 2011, when I was given a diagnosis of serum sickness for my bizarre symptoms, I put all my symptoms in the serum sickness basket. I read and read and read about serum sickness. Everytime I had a flare up over the course of the following 18 months, I figured it was something to do with what had happened in my plasma due to serum sickness. But, having the same symptoms almost 2 years later and knowing what I know about serum sickness, I think the premise was wrong.

I think the diagnostician (doctor) made a diagnostic error.

I understand that and I don't blame the diagnostician. But neither should the diagnostician blame me for trusting the initial diagnosis and then later, still suffering with the same symptoms that should have cleared and for which no one still has an answer, researching to try to self diagnose.

Last week, I sat with a friend catching up, sharing our stories from the past few months. After I shared what I've been through physically, he responded, "So, you are back at square one."

"No," I replied. "There has been learning. So I'm not back at square one."

I paused and thought a moment and said, "I'm stepping outside the square."

Two days later, and after more reading and searching, I had a light bulb thought: I may never have had serum sickness. Rather this may be a straight forward side effect to terbinafine (the drug to which I responded with symptoms that were diagnosed as a serum sickness like response to oral terbinafine).

If I am reading information on a link correctly, the FDA has 31 reported cases of peripheral neuropathy to terbinafine, not much among the tens or hundreds of thousands of people who ingest terbinafine. But, how many cases may be misdiagnosed or undiagnosed or ignored, writing the patient off as exaggerating or suffering from some type of hysteria? How many cases go unreported? (My "serum sickness" case to terbinafine was not reported. I asked, "Shouldn't we report this so it's on file?" I was given the answer that there may be somewhere I can find to report it. It was left up to me to find out where and how.)

I'm pretty dang sure that I have my diagnosis figured out. It's not serum sickness or allergies, but small fiber peripheral neuropathy brought on by a toxic substance. Now I need to figure out how to present it intelligently and respectfully to a new diagnostician to get the proper tests. I'll be open to being wrong, once I am proven wrong.

Remember Carol when you were diagnosed with a herniated disc confirmed with the right test, an MRI? You presented your doctor with a route to try while presenting your doctor with Dr. Sarno's book and research you found online. The doc listened, read the book, and agreed to give the approach a try...and it worked.

I can do this. My very quality of life and future may depend on it.

Have confidence Carol, not arrogance...but confidence.

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

I shall rise... two, too, to...

I am fed up with American medical hoop jumping.

I combed my mind this past week:
What is it Carol? What are you doing incorrectly that has you feeling beaten by the system? Where did you veer off the course of self-empowerment? What are you afraid of?

I've not been an advocate for me. I have given too much authority and power to the American medical system without listening to my own heart and body.

As I sat in my chiropractor's office on Wednesday, I stated: "They aren't practicing medicine or healing. They are practicing technology."

I've been passed from one test to another. All tests are for the most part "normal," except I am now developing carpal tunnel in my left wrist.

But, but, but....here I sit with the same symptoms in all my limbs for two years with no answers.

As of 1-1/2 weeks ago, my primary care doctor has denied the one medication I know that helps curb the symptoms to give me respite for the next leg of this struggle. That medication is low dose prednisone; I know it well and I know the side effects well...so does my body. All I asked for was relief so I could continue to search for answers.

Instead, the doctor prescribed Xanax so I can sleep. It gives no relief to my physical symptoms which are at the core of every other symptom I am now experiencing.

As I examined what I have done incorrectly that has left me feeling mired within American medical politics passing me off from one doc to the next, from one test to the next, I realized that the system's opinions are based mostly on tests. If the test states, "you don't have this problem" ... then the test trumps. The patient has been reduced to numbers on a sheet.

I call bullshit.

Example:
In the summer of 2011 when I could barely walk or use any of my limbs or hands, an ultrasound was ordered for my abdomen. Why? If memory serves me correctly, it was ordered because all other tests were coming back normal; I was healthy. Except that I was lame.
The results of the ultrasound? Gallbladder disease.
But, I had no gall bladder symptoms.
That didn't matter.
The GP's office set an appointment for me with a gallbladder doctor.
A few weeks later I get a phone call from Dr. Gallbladder's office confirming my upcoming appointment.
The conversation went something like this:
Dr. G: "Hi Mrs. Welch. This is Dr. Gallbladder's office confirming your upcoming appointment."
Me: "Yes, I have it on my calendar."
Pause
Me: "I have a question. What exactly will be done at this appointment?"
Dr. G: "Well it is a pre-op appointment to have your gallbladder removed."
Me: "What?!?"
Dr. G: "Your GP's office made the appointment because you show signs of gallbladder disease."
Me: "No. A test showed I have signs of gallbladder disease. I have no symptoms."
Dr. G: "You have not symptoms?!?"
Me: "Correct. None."
Dr. G: "Well, you don't need this appointment then. We'll just cancel it."
Me: "Thank you."

I brought this scenario up later with my GP. Her response was that the test shows I have this problem and that she wouldn't want me out on the trail and my gall bladder all of sudden gives me trouble. I responded that I'd cross that bridge if it ever happens.

To this day, two years later, I still have no symptoms of gallbladder disease.

Perhaps my gallbladder is riddled with poison and will explode any day, but I'll opt to wait it out.

I do have symptoms of peripheral neuropathy (PN), but all the tests (so far) say I'm healthy. I'm learning that I'm not unusual in that category; others have been down a similar path. And there are tests I haven't had yet.

After googling PN and terbinafine (the drug that has caused all this suffering) I found that the FDA has at least 32 cases on file of terbinafine causing PN.

I now think I never had serum sickness. I think I was misdiagnosed. I should have gone to a neurologist from the beginning. Medications are one of the main causes of PN.

Could I be wrong? Sure. But, until someone can give me evidence and a clear diagnosis, I think I am correct. I don't blame the docs for the misdiagnosis. I do blame the system. (Actually I don't solely "blame the system." The system is partly driven by the public. I am part of that public. There is plenty of blame to go around. Pointing out blame doesn't help; taking responsibility is what helps. In the scenario in which I currently find myself, I think my biggest error was that I was not bold enough regarding what I know about my own body. I am responsible to speak up and even to agree to disagree and find another practitioner if necessary.)

I saw an acupuncturist on April 24. I'm hopeful that I see results. I googled drug-induced PN and acupuncture. Some have gotten relief and have even gotten better. Maybe, just maybe.

This all reminds me of Audubon's quote, something like: "When the bird and the book disagree, believe the bird."

The Phoenix is a bird. I too shall rise.



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ADDED NOTE, 4/28/13: Since writing this blog piece on 4/26, I have collected hard copies of tests results from 2011. The ultrasound result from July, 2011, regarding my gallbladder states: cholelithiasis. Translated to lay terms: gallstones. It may be that my GP's office told me this at the time and I looked up gallstones; I cannot recall now and in July, 2011, I was exhausted and simply trying to function every day. Surgery is not recommended for "silent gallstones." Had I opted to see the gallbladder surgeon, I imagine (and hope) the gallbladder surgeon would have concluded that surgery was not necessary.
***************

I shall rise....

I'm not sure what to write.

As of a couple hours ago, I knew at least the direction I wanted to write.

But then, I discovered I'd received a voice mail. It was from my General Practitioner's office letting me know that I have an appointment at 8:00 AM in the morning with a rheumatology/immunology specialist at the local university hospital.

I was stunned. I had no idea it would be that quick.

I returned the phone call to my GP's office. Typically I get a voice mail and have to leave a message, but not this time. Crystal answered.

"I got your message. I can't go tomorrow morning. I had no idea I'd get in so fast."

"Carol, you have to go. You are meant to have this appointment. Otherwise you are looking at 3 months. They had a cancellation. This appointment is meant for you."

"How about the neurologist? Is there an appointment yet?"

"Right now we are looking at July."

"July?!?"

"Yes, July. But, I am putting together a 60-page fax and sending it to the triage nurse with neurology at Wake to hopefully get you in quicker."

My stomach had butterflies. I was in a state of shock. One would think I'd be thrilled by the news that I could get in as quickly as I could with the one doctor.

"That's why you have to be there tomorrow morning. It is meant to be. It really is like miracle. This never happens."

"Okay, I'll make it work."

I hung up and started dialing Son's number to line up a schedule change so he could cover my early AM business appointment for me. As I was getting ready to dial, he texted me. "Do I still have Hilde in the AM?"

I called Son and got his voice mail. I hung up without leaving a message, our typical phone communication. He'd see on his phone roster that I had called and eventually call back.

I began composing a text in response to Son: "No, not Hilde. But I need your help with something else. Can you..."
My phone rang before I got the text finished. It was Son. Yes, he can cover my morning business appointment.

Yesterday, Wednesday, was a day from emotional hell. It began at 9:30 at a neurologist office for more tests.
All I could do from the time I awoke and through the appointment was cry.

I felt so embarrassed.
I felt desperate.

We finished the test.

"Well, your nerve connectivity tests are normal for the most part. And all you blood work is normal."

I started balling.

"I can't go on like this. I need relief."

I went into my whole reasoning as to why I need to go up on prednisone and then taper down again...just so I can get relief. So I can sleep. So I can move and get some exercise to start building up muscle again. So I don't arise with dread and then dread the night time when I will be awoken with pain. So I can turn a key without it feeling like I have just performed an incredible feat. So I don't have 24/7 pain. I needed a respite and the only thing I knew that could help was prednisone.

"I can't help with that," he replied. "I'm not the prescribing physician for that prescription for you."

Between sniffs and rolling tears, I thanked him.
He released me.
I called my GP's office tears flooding down my cheeks.
She was working Wednesday, but had no openings.

"I have to be worked in today. I cannot continue this way. Is there anyway I can get in?"

"Hold on."

Someone else picked up the phone.

"Can you be here at 1:45?"

"Yes."

We hung up and I called Hubby.

"Do you need me to come with you?" he asked.

"You can do that?"

"Yes," he replied.

I went home to wait for Hubby and count how much prednisone I had.

I started on prednisone in July or August, 2011, after the diagnosis of an idiosyncratic serum-sickness-like response to oral terbinafine. I know prednisone risks well; pred and I are well acquainted and have a love-hate relationship. But, I've been a low dose since August, 2011. Side effects are supposedly less at a low dose. Since December, 2012, I'd been on 2.5 mg per day. But it wasn't doing the trick. At 5 mg or 7 mg, I could function reasonably well. But not at 2.5.

I knew my GP would say no to me going up to 15 mg and tapering down. But maybe she'd agree...just so I could get a break until we knew what to do next. Even if she didn't, maybe I had enough to get me through a month.

While at home I roughly counted how many prednisone pills I had.
Enough to start at 15 mg on Wednesday and then work down to 5 mg or less over the next month.

My appointment an hourish later with my GP was exasperating. At one point I got up angrily with tears streaming down my face to walk out. I could not understand the logic of the risk of steroids for respite compared to what I had been going through: lack of sleep, depression, pain 24/7, inability to function, hopelessness, no clear diagnosis for anyone to treat, inflammation and tenderness in all my limbs and hands and feet.

She had to understand that I could not, in any way shape or form, continue. I had to have a respite from this suffering. Damn it!!!

She acknowledged my pain. She has been all along.

I apologized for my emotional eruptions.

Somewhere in the midst of our discussion or maybe it'd be better described as argument, she brought up tertiary care which we had discussed as a possible plan of action if nothing panned out with a local neurologist, which it hadn't.

She had spoken with the local neurologist from my morning visit. He had suggested acupuncture, which of course I am willing to try. My GP stated I could start the acupuncture. In the meantime, she would get me in with two university doctors, either at Duke or Wake. One appointment with a rheumatologist and another appointment with a neurologist. They could consult with their thoughts and results. It'd probably be a few days before Crystal would be back with me regarding an appointment. They would do their best to get me in ASAP.

I had already made an appointment earlier that day with an integrative doctor. She agreed with my decision on that. The integrative doctor has an opening mid-May.

And now, here I sit staring down a rabbit hole I never, ever, ever, ever wanted to go down again. A Carousel of Physicians.
Since May 2011 with the onset of serum sickness: General Practitioner. Rheumatologist. Neurologist. Hand surgeon. Chiropractor.
On the agenda now: Research rheumatologist. Acupuncturist. Research neurologist. Integrative MD.

Carol, maybe it won't be a rabbit hole or a carousel. Maybe you won't have to get on the merry-go-round. Calm your heart. Address and clarify your fears. Let the doctor know your fears. You have more wisdom now, about maneuvering the medical politics, about your body, about your say. Remember that, Carol. Stay calm.

I started the 15 mg on Wednesday.

Placebo effect or not, I'm already feeling relief.

I looked up information on the web about the research doctor I see tomorrow.
He looks nice.
His reputation is good.
His knowledge appears impressive and open to new ideas.
He's got a few decades of research and healing.
He better be a good listener.

Still, I cry.

***********

Grief...

Today I feel grief.
At least I recognize the emotional pain and can state what it is.
I am trying to not suppress the grief.
At the same time, I am endeavoring to be grateful for all the good in life.

After the grief today, I felt anger and determination.
I told myself, "I will not allow this illness to steal my dreams."
But, at the same time, I must somehow accept the reality that this may never go away and will always be.

My father lived as a quadriplegic for 13 years due to a car wreck.
He lived a full life those 13 years, in spite of his disability

I can adapt and live a full life too, even if I need to change some of my dreams.

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Journal Entry: 3/26/13

What to write? If I write do I click "publish?"

Polyneuropathy ended up on my reading list today.

Both my feet and hands continue to be tender and weak.

It has been almost two years since the onset of serum sickness, or to be more accurate - an idosyncratic serum-sickness like response to oral terbinafine. I wrote about the serum sickness in an earlier blog piece from July, 2011: Serum Sickness. I was hopeful when I wrote that piece, hopeful that the prednisone would work its magic and my body would rid itself of whatever took hold in my plasma.

But, that didn't happen. I'm not as bad as I was in 2011; nothing close. But, still I don't have my limbs fully back. Maybe I never will. But I don't want things to get worse.

I developed carpal tunnel due at least in part (and maybe in whole) because of the serum sickness. I had carpal tunnel surgery on my right wrist on February 18.

A few nights ago, I awoke from sleep; my left middle fingers were numb. My mind screamed, "NO! This cannot and will not be!! I will not develop carpal tunnel in my left wrist too. GO AWAY!!"

I straightened my left hand out so that my wrist was straight. My right hand and wrist and forearm were in a brace already. I thought about rousing myself to go find a brace for my left hand. I moved my ankles in circles and felt the tenderness in my ankles and feet. My mind wondered to tarsal tunnel; would I develop that too? "Please god, no." I drifted back to sleep.

When I had asthma between the ages of 22 and 42, I used to be afraid to go to sleep at night. The asthma would be at its worse during my sleep. I'd awake in fright gasping for breath with a horrid sea of fluid in my lungs. Often, I'd go to sleep sitting up leaning forward over a husband pillow, hoping that by staying upright I could avoid an asthma attack. It seldom worked.

I've found myself the past months having anxiety when I know it's time to go to sleep. The pain and tenderness are worse when I sleep. When I awake in the morning, it takes a moment for my feet to work properly...to get my balance and footing. Once I start walking, the tenderness subsides. But it is always there at a low level. I want it to go away. I want my hands and feet, my ankles and wrists, back.

After researching my symptoms today, I want an appointment with a neurologist. I called the general practitioner and made an appointment for this Thursday. I want to see if she will refer me to a neurologist. Maybe with a referral I can be seen more quickly. I can't keep living this way. I will not allow this stuff to steal my dream of thru-hiking the Appalachian Trail.

As I spoke in tears on the phone with Hubby today, I said, "Maybe I should complain more. I think sometimes I minimize my pain and symptoms. I think to myself, 'Carol, it's not that bad.' And I find myself thinking of Dad and comparing any thing I go through with quadriplegia; nothing can be as bad as quadriplegia."

I guess now, I've complained.

Journal Entry: February 15, 2013

From the pages of my journal
February 15, 2013

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My juice and smoothie fast was successful. I guess I went about 25 days. My relationship with food is more intimate and conscious.

Today I hiked a bit over five miles along the Castle Rock Gorge trail off the Blue Ridge Parkway in Virginia. It was a good, needed hike.

Nary a car was heard on the Parkway and I saw only two hikers on the trail.

After my hike, I thought about stopping at Meadows of Dan at the general store and enjoying pinto beans with corn bread and slaw.

But, as I drove my 1999 Ford Explorer south on the Parkway listening to Yes, I passed by the road that leads to Chateau Morrisette, the vineyards and the restaurant.

Hmm. I wonder if the Chateau is open. That would be nice, some fine dining. Pintos would be nice too...but the Chateau? That would be extra special.

I turned my steering wheel to the east and took a uuie on the Parkway circling back and around onto the side road that leads to the Chateau. I drove the quarter mile down the road and pulled into the gravel parking lot on the right. I saw cars.

Oh boy. Maybe it is open.

I parked my truck and donned my brand new, natural fiber, jewel tone scarf and my purple Company Store down vest. I walked across the gravel lot and through the stately doors. There stood a young lady.

"Are you open?" I inquired.

"Yes we are," she responded with a smile.

"Wonderful. I'll be right back!" I responded with a smile.

Instead of pintos and cornbread and slaw, I ate a scrumptious portabella mushroom with spring greens salad, some veggie and chicken broth, and drank a variety of wines. The red wine aroma was out of this world.

As I chewed the food and drank the broth, I savored every morsel.
I thought about the hands that had harvested the greens.
I thought about the chicken that had given her life.

I drank the apple wine and envisioned the blossoms of the apple tree and the bees that buzz and pollinate.
When I switched to red wine, I recalled the Europeans who first sailed the Atlantic and came upon the North Carolina coast in the 1500s and were overtaken by the aroma of grapes confirming that they were near land.

It was a good day today on the Parkway.

***********