Thursday, August 25, 2011

Mission 2011: Happiness is Having a Plan

I've been figuring out my next move when it comes to my pursuit of recapture my good health and I think I have a pretty good plan. That said, this is the fourth big plan I have researched, prepared for and implemented in the past 7 years.  So before I share my new plan, perhaps I should take the time to review the old ones too.

Plan A: Pain Management

When I developed chronic pain and fibromyalgia after a trip-and-fall accident, my first plan of action was getting rid of my pain.  To do this, I saw a lot of people who specialized in different aspects of pain management.  Then I participated in lots of different pain management therapies.  These included:
  • physical therapy
  • trigger point injections
  • deep injections, like epidurals and facet joint injections
  • acupuncture
  • acupressure
  • myofascial release
  • a chronic pain rehab program
  • warm water pool therapy
  • non-narcotic pain medications
  • heat
  • cold
  • topical pain rubs

First, as I look at this list, I am sure I am forgetting things.  Second, I am saddened that all these approaches did not reduce my pain in any way, shape or form.  So after about three years of trying Plan A, I knew it was time for Plan B.

Plan B: Better Sleep

At one point during Plan A, one of my doctors suggested that I needed a sleep study to rule out any sleep disorders that might be associated with having fibromyalgia.  Sure enough, my sleep lab results showed I had sleep apnea, delayed onset sleep and problems falling asleep, staying asleep and getting enough Stage 4 deep sleep.

In 2007, when the pain management approached was failing to bring about a significant change, I decided that maybe I should switch my focus and tackle my sleep issues in the hopes that a good night sleep might help with the pain.  So I tried:

  • seeing a sleep specialist (or three!)
  • religious use of a CPAP machine
  • sleep medications
  • sleeping on a wool mattress pad
  • using a Comfort-U body pillow
  • switching to moisture wicking pajamas
  • focusing on sleep hygiene

Unfortunately, my three year pursuit of a good night's sleep was both frustrating and fruitless.  Treating the sleep apnea didn't help my pain.  I failed to find a good medication fix for my sleep problems that didn't create other problems for me. And for some of my sleep problems there were no good treatment options.  Plan B was a good idea, but it didn't yield the results I was looking for.

Plan C: Treat the Hepatitis C

There was a lot of speculation that maybe my Hepatitis C was contributing to my pain disorders.  My rheumatologist, who didn't seem to be able to help me, was convinced this was the case.  My hepatologist was more skeptical, ultimately saying that the only way to tell was to treat the Hep C.  Hep C treatment is not easy, so I waffled for a while about whether or not to try it.  I finally decided to give it a go in Fall 2007.

I lasted three weeks and gave up after multiple complications that landed me in the hospital.  It cause a major flare-up of my chronic fatigue symptoms and it took me three months to recover.

Recommendations from the Mayo Clinic

Having failed in some of my previous attempts, I was encouraged by the neurologist at Mayo Clinic this past March to consider yet another plan of action.  In addition to making some changes to the medications I take to control my dysautonomia symptoms, I was asked to consider two more things: 
  1. surgery for carpal tunnel syndrome 
  2. trying Hep C treatment again
Based on a second EMG and nerve conduction study, it was discovered that the compression of my median nerve has been getting worse, not better.  (Compression of the median nerve at the wrist is what causes carpal tunnel syndrome.)  My neurologist was very up front with me about his recommendation that this was a problem that needed to be addressed, sooner versus later.

Additionally, he expressed his concern that my ever increasing Hep C viral load was somehow contributing to my dysautonomia.  He wanted me to be seen by the Hepatology Department while at Mayo, but since this was not possible during the week I was there, I promised to follow-up with my hepatologist at UCLA when I returned home.

There have been several advancements in the treatment of Hep C.  These include a blood test to see if a patient will respond to interferon therapy and two new anti-viral medications approved in May 2011.  Since I am a responder to interferon and the new medications would be available to me, I've needed to seriously consider trying Hep C treatment again. 

In addition, some of the complications that landed me in the hospital last time have now been addressed and managed to the point where they may not interfere with successful treatment a second time.

Plan D: Taking Care of Business

Having pondered the advice I got at Mayo, I have decided to move forward with both the carpal tunnel surgery and a second attempt at Hep C treatment.  Surgery is scheduled for August 31 for my right hand and then 6 to 8 weeks later I will have surgery on my left hand.  Which gives me a few months to recover before my follow-up appointment in early January 2011 at which time I will start Hep C treatment.

Although I have high hopes for success, the bottom line is that I'm not sure how these two actions will impact my health.  As I see it, they both involve interventions that have the potential to make things flare-up and worsen in the short term.  But since it is long term relief I am seeking, I have forced myself to focus on the benefits and positive impact less carpal tunnel symptoms and the absence of an active Hep C infection could have on my overall health.

Yes, I have a new plan and I am sticking with it.  Which is great because I always do feel better when I have plan. There is something reassuring about knowing where you are going and what you are doing and just giving in and going with the flow.  And if this plan works, I will definitely be a happy camper.

And if not, there is always Plan E to look forward to, right?

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deb aka murphthesurf said...

Wow is all I can say! Wishing you all the luck with the next plan along this journey. I truly hope it all works out for you and I give you credit for keeping at it. I am alot like you in that I have to have some kind of plan. But I do realize that my motto in life has always been to fix it if it is broken. Unfortunately with chronic conditions there isn't always a clear cut answer on how to fix it. Wish there was because it sure would make it a heck of alot easier on us all.

Emily said...

You have a lot more optimism than I, Selena. I fix the things that are "broken" on me as best as I can, and try to comfort myself as best as I can through pain management, sedatives, and things that make me happy such as candles, aromatherapy, good books, and being with my son.

My only plan is to be able to live until my son doesn't need to call me "Mommy" any more. There is no plan for me with Lupus, I can only hope.

The best of luck for you.