Tuesday, March 2, 2010

what a pain

For many years (at least 16) I've been dealing with a strange constellation of symptoms that have waxed and waned over the years but have generally become progressively more difficult over time.  My primary symptoms include moderate to severe fatigue and generalized muscle & joint pain, including "trigger point" pain.  I also have trouble with sleep, IBS, headaches, Raynaud's Syndrome in hands & feet), as well as memory and concentration problems.  I have struggled with depression from time to time as well.

I have visited with many doctors over the years - even going as far as to travel to Louisiana to see a doctor who specializes in chronic fatigue diseases.  He tested for many things and found a positive test for Lyme Disease as well as a boatload of allergies.  I did a year of multiple antibiotic therapies and other treatments (including a very low sugar diet).  I did get some better (and lost a LOT of weight! w00t!) - after a year the doctor recommended that I begin IV antibiotic therapy and that was the point at which long-distance doctoring got complicated (and expensive) and we decided to take a big step back.

Over the years doctors have suggested Chronic Fatigue SyndromeFibromyalgia, and chronic Lyme Disease (lots of controversy over whether the "chronic" part of that one exists or not).  My symptoms are a pretty good fit for any or all.  I'm pretty sure all are listed somewhere in my Permanent Record.  We don't know what to call it!  None of these are known to be life-threatening (although some would argue with me on the Lyme Disease) but they are chronic and typically require lifetime management.  They can sometimes be quite limiting to disabling.

Whatever it is, I've had a pretty tough winter - for fatigue & pain especially.  My digestive system got in the act as well - Dr Deb tested for an ulcer which I am disappointed to not have.  I was hoping to finally have something I could blame on my teenagers!  ;-)  

Dr Deb (Walker) almost delivered 3 of my 4 children.  (Kathryn was born in Minneapolis and Deb was out of town when Alex was born - I'm still getting over that.)  She's been in Kenya the last 5 or 6 years - she has the heart of a missionary!  Now she is back in practice here in town and I'm looking forward to working with her to find some additional symptom relief and wellness.  To this point I have mostly avoided the pharmacy, but I think I'm ready to give some of the "new" meds a chance - let's see what science can do.  :-)

Jeff is helping me stick to a (very) modified exercise plan - he is a good trainer and encourager.  We're all working on a healthier diet.  Reducing or eliminating  some of the not-so-good for you stuff and increasing good stuff.  Again, Jeff is amazing.  And such a practical help.

When I was first sick, I more actively pursued an answer - mostly to rule out anything "worse."  Then for many years I tried to ignore it - everybody in my life paid for the times I overloaded the schedule and just couldn't keep going.  I have been more actively managing it in the last couple years.  And we're trying to re-start my life now in a healthier, more realistic way to try to smooth out the ups and downs as much as possible.  We open & looking for any tools we can use to make this easier.

Jeff was looking through the schedule for the Fargo Film Festival this week (I love this town!!) and he noticed an award-winning documentary showing twice this week:  Under Our Skin.  (also a FaceBook page)  They are also having a special luncheon panel discussion with doctors and patients at noon on Thursday.  I haven't been aware of anything quite like this in Fargo - so we're planning to go and hoping to learn something new.

I try not to talk about it too terribly much (mostly because once I start talking about ME I just don't know when to stop!!) because it is a constant and ongoing part of my life.  And it is boring to me.  And I really don't want to be a whiny, complaining person.  Bleh.  

As the kids say, "that's my story."  That's where it's at for me right now.  

I'm always surprised that anybody reads my electronic scribblings, but so gratified by your comments and encouragements.  So thank you for letting me share our life with you - for caring about us and thinking about us and praying for us when you think of it.  


1 comment:

  1. Lori--I love this post. Sometimes--or maybe always--it is the moments when we let our "blog wall" down that are certainly the most revealing but also the most...knowing. I am sorry for your struggles. I have a good friend who struggles with that same unknown. Unfortunately (as she says) she and her husband are both nurses, so she always imagines the worst. She says it is definitely a curse to be a parent and be a nurse, too!