And Then There Was Hope

Three years ago today, I dragged myself out of bed, and with the aid of my walker (and likely a wheelchair), I paid a visit to a local doctor/ practitioner of Functional Medicine.

Getting out in those days was a huge ordeal, and typically entailed a backlash that would last weeks. I was that sick. I was also desperate.

I found the notes on that early visit when searching through my archives, looking for an interesting anniversary in response to this week’s challenge.

My family doctor had cautioned me against hoping for too much, but this new doctor, soft spoken, listened to me intently, and took the time to explain, and then, we made a plan. A plan for recovery! Something I had not thought possible.

Three years ago today, I found renewed hope.

(To read the original post, click here. V.J.’s Weekly Challenge is anniversary. There’s still time to join in.)

Still Loving My Doc

thThe challenge, when dealing with a chronic illness – in my case ME/CFS – is staying positive.  Momentary improvements in health are toppled by extreme crashes.  It’s like living in an eddy where, every once a while, the current quiets and it feels as if there might be an escape, and then the weather shifts and the spinning pull gains force.

When I presented at my doctor’s this week, I felt like I just didn’t have the psychological fortitude to keep going.

The doctor I’m referring to is not my normal family doc.  Dr B is an MD, and anesthesiologist by training, but he has also extensively studied complementary approaches to health care.  The first thing to do when arriving in his office is fill out a two page self-assessment; he then goes over this questionnaire and the medical chart before entering the consult room.

“It’s been a year,”  I say in way of greeting.

“I see that,” he says.  “Let’s review where we’ve been.”  Dr B then proceeds to go over my initial blood results, our earlier goals, what we’ve accomplished along the way, and then he asks:

“So what would you say is your most pressing issue right now?”

I find myself, through tears, blurting out:

“I just have no strength, no energy.  Everything feels too hard again.  When I stand or sit my heart races, I sweat profusely and I just feel so sick.”

I apologize for crying, but he brushes that off and invites me onto the examination table.  He checks out my shoulder, which since the last time I saw him now has a tear for which I’ve received a cortisone shot.  He notes that it’s still frozen.

Dr. B uses muscle testing as a way to determine what the body needs.  My body confirms my sentiments:  adrenal and mitochondrial dysfunction continues to be my top issue.  He explains how this manifests itself – basically describing my struggles.  He prescribes a new regime of herbals and supplements.

Then he suggests some acupuncture for my shoulder.

I’ve been receiving acupuncture for seven years now as pain control, but never from him.  I’m willing to try anything.th-1

One single needle inserted along my left earlobe and my frozen shoulder releases.  Really?!

As he explains the process and the connection, I suddenly grow weary, and in fact, fall asleep on the table.

Nonchalantly, Dr B covers me up, turns down the lights and lets himself out.  Nature’s call awakens me sometime later and I emerge, embarrassed.

“He came out of the office and just told us you needed to rest,” my husband tells me on the way home.  “Asked me if we needed to be anywhere, and I said no.”

One day later and the pain in my right shoulder and arm is still gone.  I can lift my arm, get it behind my back, and reach for things.  I’m still shaking my head in disbelief.

And I’m still chuckling over the fact that I fell asleep in the doctor’s office.

This is why I love Dr. B.

That, and the fact that I feel hopeful again.

Doctor Love

I’m in love with my doctor.th

I realized it this afternoon, when having just returned from a quarterly visit; I opened my email to find three messages from his office, all with attachments outlining the new course of treatment he has assigned me.

It’s not that I didn’t know the emails were coming – handouts detailing medication, research, etc. are part of his practice – it’s that the whole experience with this doctor is so affirming.

I started seeing Dr. B last April, mostly as a last resort since traditional medicine really doesn’t have treatment protocols for ME/CFS in Canada.  Dr B is both an MD and a practitioner of alternative medicine – which he calls Functional Medicine.  (For more information, click here.)

A typical appointment lasts between thirty to sixty minutes.  During that time, Dr B, listens to my concerns and answers whatever questions I might have as well as reviewing and deciding on the next course of action.  Today, along with his nurse, we celebrated progress, and then planned the next steps.

I was able to stop three of the meds, and he added two new ones.

“When you read the applications for this one,” he said indicating the bottle, “you’ll understand why I am recommending it.”

Patiently, he wrote down instructions for me and answered my questions.

Eagerly, I opened his message when I returned home and read the accompanying material for the formula he prescribed, and that is when I felt the gush of warmth wash over me.  There, in black and white, he outlined many of the symptoms that I have been experiencing and yet, have not always been able to articulate.

In that moment, I knew he gets me.

“I’m in love with my Doctor,”  I told my husband.

“Are you telling me to get out of the way?” he asked, startled.

“Of course not!”  I said (maybe a little hesitatingly) “It’s just so refreshing to be heard by someone in the medical field.”th-1

Hubby couldn’t help but agree.  ME/CFS, while it affects thousands of people, is a little known disease, and commonly misunderstood.  Ric has accompanied me to the emergency ward many times where I’ve been told there is nothing wrong with me.  He has shared my frustration when doctors have told me there is nothing they can do.

Dr B is not one of those professionals.  I get the feeling that if he didn’t know the answer to something, he’d be just the type to make it a personal research project.  His caring is genuine, and that, from a patient’s perspective, is worth the price of treatment.

Healing Is A Process

I haven’t written for a while about my progress with Functional Medicine.

To be honest, I was starting to have doubts.  I mean, people have suffered with this disease (ME/CFS) for years without a cure, so what makes me think I’ll be any different?  b82872df49b88b86bfe76445f67be943

There have definitely been improvements, most remarkably with my gut.  Used to be that I would eat something, anything, and my stomach would swell followed by pain and discomfort and either diarrhea or constipation. That problem seems to be solved.  I still follow a gluten-free diet, but have been able to eat some dairy.

I am also able to be upright for longer periods of time before symptoms return, which means not as much time in bed.  My energy also seems to last a bit longer.  All good.

On the down side, I am experiencing a flood of traumatic memories, as well as increased pain in the body.  At times, I feel severely ill, or have crippling headaches.  I still can’t push myself without repercussions that set me back for days.

Hering’s Law of Cure is what my doctor keeps referring to.  Basically it states that healing occurs from top to bottom, from inside to out, major organs first and in reverse order of occurrence.  He encourages me to stay with the program, even though I feel overwhelmed at times.  d449ede1efe05795e0130562be827511

So, at this point, I’ve adopted an attitude of wait of see.  Better to try than not, I suppose.

Just don’t expect to see me in any marathons quite yet.

(First image:  pinterest.com, right image:
kindnessblog.com)

Measured by Costco

Living with ME/CFS is often a matter of trial and error – the line between what the body is capable of and overexertion is never quite definable, except in the aftermath.  th-2

Yesterday, I accompanied my daughter to Costco, which was teeming with cars and people.  We found a parking spot close to the entrance, and I grabbed a shopping cart to lean on until I got inside and found a ride-on cart.  The day was steaming hot, the thick air burdening my lungs, but I persevered.  Baby and I rode in a mobility cart and followed Mom through the store.  It was only as I made my way across the parking lot, back to the car that I realized I had overextended myself. I spent the rest of the day and all last night reeling from the repercussions, my husband angry with me that I would take such a risk, and me deflated that my progress is thwarted so easily.th-3

Costco has come to represent a measure of this disease.  I was in the parking lot the day I got the call from the doctor telling me the diagnosis.  We talked for an hour and half that day as she explained what my body was going through and how it would manifest and that I should avoid places like the one I was about to enter.  Much of what she said that day would be lost in the horror of absorbing the news, but I remember it as the onset of change and a downward spiral.

In defiance, I tried to make the trip again, telling myself that if I took a ride-on cart, I would be fine, but I underestimated the effect of the crowds, the lights, the overwhelming visual stimulation, and fled within minutes of arriving. th-4

I would try again months later, only to leave in tears, as the store demanded more from me than my nervous system could handle.

Since then I’ve been working with a doctor of Functional Medicine, and bit by bit I feel as if the shattered me is mending and I am gaining the stability I need to be back in the world, and so I tried again, a few weeks ago with my PSW.  There were no mobility vehicles available that day, and since I had failed to bring my wheelchair, the effort was a failure; so when my daughter suggests a trip yesterday, I jumped on it.

And we did it!  I drove that buggy all over the store, focused more on the baby in the cart ahead of me, and less on the merchandise and crowds, and apart from the overwhelming sounds of the place, I managed to stay intact.

It is progress, for sure.

Three months to a year, is the prognosis of this new doctor.  It has been one month since we started the new treatment regime and already I am feeling better.  Now all I have to do, is learn patience.

“I’m like a racehorse at the gate,” I tell him.  “Just can’t wait to get on with life.” th-5

 

Contemplating Wellness

“Four treatments should about do it,” the doctor advised while discussing approaches to tackling ME/CFS, which has kept me homebound for the past two years. “Once your body is stronger, we can tackle the Lyme disease.”  th-1

Wednesday marked the final of four IV Ozone/Ultra-violet light/Glutathione treatments.  At the beginning of each visit, the patient is asked to complete a self-assessment questionnaire rating different symptoms – frequency and intensity.  When I first sought help from this doctor, I scored in the 130’s.  On this last visit my score was 77.  I predict it will be lower when we meet again in two weeks.

“You’ve had stomach problems for as long as I’ve known you,” my husband confessed recently when I commented on how much that has changed.  “That is definitely an improvement.”

thI am feeling stronger also, and notice that I have extended accessible energy.  I even went to the Farmer’s Market this week and bought groceries – something that I haven’t been able to do in years.  I still rode the store’s motorized cart, but in the past, if I could get there, I would just target certain aisles and be done.  This time I was able to browse the whole store.  I felt like a normal human being for once.

Yesterday, I climbed the stairs twice to fetch food from the downstairs freezer.  It may not sound like much, but that is a huge feat.  Climbing any stairs has been an issue for some time.  Last night, when my muscles protested – tightening and aching – I couldn’t help but wonder if this was more in response to me having worked the muscles than the normal anaerobic reaction of ME.

“I’m not all the way there yet,” I told my husband as we retired for the night. “But I’m feeling hopeful.” th-2

“I hope you didn’t expect total recovery this fast,” he cautioned.

“No…” I’m not sure what I expected.  I hoped for a return to health, naturally, but I suppose that may be too optimistic.  “I may never be back to where I was, I guess, but it would be nice to be able to do more, even if I still have to monitor my activity.”

Lying awake contemplating the restrictions that illness has imposed upon my life and reflecting back to a time when health was not an issue, I realized that compromise is not a bad goal to set.  For as long as I can remember, I have pushed myself, tried to be all things for all people, worked long hours and negated personal needs – none of it an ideal worth striving for.

th-3Should I be blessed with wellness again, I told myself; I will live a more measured existence, avoiding the complications of overcommitment and honouring my needs:  body, mind and spirit.

Balance, I decided, will be my mantra.

(Quotation from Rumi)

Things Are Looking Up

Had my third Ozonotherapy last week, and apart from feeling flushed and slightly dizzy afterwards (I then realized I was likely dehydrated) I have felt increasingly stronger.  th

“Or is it that you have a new granddaughter?” my husband likes to play Devil’s Advocate.

Having a new grandchild is definitely an energy boost – the motivation to hold that newborn baby has pushed me into to go mode, for sure.  And when my daughter indicated she was feeling overwhelmed and needed me, I came as close to jumping into IMG_1650supermom action as I have in a long time – calming the baby while she slept, cleaning the kitchen, and whipping up a tuna casserole – all tasks I have not been able to do, without severe repercussions.  (Okay, admittedly, as I write this – one day later – I am still in bed at noon, with severe neck and shoulder pain and legs that won’t cooperate.)  But I did it!

One of the hardest things about having a chronic illness, such as ME/CFS, is the mindset that it will one day just disappear – like a bad case of the flu – and I’ll be able to pick up where I left off.  Such fantastical thinking is only a detriment to progress.

If I look back, a year or two years ago, I can see that I am undoubtedly stronger, can do things I wouldn’t even entertain back then.  There has been movement, although it is a slow incline. th

In the past four weeks, since my husband’s heart attack and subsequent surgery, I have had more social interaction – thanks to caring hearts who volunteered to help out – than I’ve had in years.  Two years ago, I had to limit phone conversations to fifteen minutes or less, and even a year ago, I would only see one friend a week for a limited time.  Now I am sharing meals with friends, and able to stay the course of the visit (for the most part).
My husband likes to say that I was having wild parties while he was away.

My doctor would say that socializing is good medicine for the soul.

“You are like  midwives,” I told the two friends who have been here the most.  “overseeing my social rebirth.”

Hard to pinpoint the source of improvement, and does it really matter?  Life is th-1more often than not, one Great Mystery.  With willingness to try and an openness to possibilities, I push forward.  Suffice to say that things are looking up.