Gripe Water

One of the little vials in Elliott's medicine cabinet is called 'Gripe Water', intended to sooth his fussiness.  Though, it has never proven to be much more than a placebo, I like the name.  I sure could use some gripe water right now.

I've mentioned my battle with Lyme disease before.  A couple of years ago, I spent about six months in aggressive antibiotic treatment under the direction of two physicians in Chico, Ca.  I had been plagued by mysterious symptoms for almost 20 years, with little relief.  But, with the treatments in Chico, I made dramatic improvements.  It felt like I was being given my life back.  At the time, my doctors said I would probably need consistent treatment for at least a year, and they recommended IV antibiotics as well as hyperbaric chamber treatment. However, my marriage ended, which dramatically affected my financial status, so my treatment ended as well.  The cessation of treatment was actually a blessing, as it would have been very bad for baby Elliott if I had been on those meds during my pregnancy.

Even though I wasn't able to complete the therapy, I felt so much better for a very long time.  But, it's all coming back.  I was warned that Lyme is a very stealth and sneaky adversary.  I knew it would resurface.  It's just that I've had time to forget what it felt like.  So far, the symptoms I'm recognizing include:

• Foot and hand pain.  Especially when I wake in the morning, the pain in my feet is similar to the feeling you get after walking all over Disney Land for days with bad shoes.  The bones feel bruised and feet feel swollen, even though there is no visible swelling.  The hand pain is more like arthritis.  They ache and hurt when I try to open things or grip anything tightly.
• Restless Legs Syndrome.  Unbelievably irritating!
• Back pain.  My spine is very stiff.  Notable pain in my ribs, shoulders, and lower back. I know some of this is Elliott-related.  I would attribute it all to him if I hadn't felt it all before.
• Hip pain.  This is unique.  My hips ache and occasionally seem to give out.  I do think some is of this is a result of pinched nerves related to Elliott though.
• Fatigue.  This is one of the worst symptoms.  I dread it.  
• Brain Fog.  I was so happy when the brain fog lifted during my six months of treatment.  I want that back.  I feel myself sinking into the fog and, again, I dread it.
• Black outs.  More specifically, Postural Orthostatic Tachycardia and Hypotension.  Sucks.
• Anxiety.  This is already an issue for me, made worse when I'm sick.
• Night sweats.  

I have no insurance, but it wouldn't really matter since Lyme is a highly debated diagnosis in the insurance and big medicine world.  Doctors that are aware of the depth of this illness are rare, and those that have the knowledge and willingness to treat it are even more scarce.  But they're out there.  I don't intend to give in to this bug.

I'm just so very pissed at this reality!  I hate it!  I tend to push through as much as I can.  I still create (I find it therapeutic), mother, play; but it's all a lot harder.  I hesitate a little more at planning outings... Will it hurt?  Will I get too tired?  Will I be irritable and bitchy?  Unh.

SOAP BOX:
I would like to note that I know of several others that attended Monterey Bay Academy, that have been tested and diagnosed with Lyme disease.  It was rampant in Santa Cruz county in 1989/90, and is still endemic in that area.  You do NOT have to see the tick, feel a bite, or see a bull's eye rash to have the disease.  Less that 40% do.  If left untreated it becomes chronic and neurological.  It is rarely alone, Lyme disease usually brings a host of co-infections with it, which also must be addressed in treatment.  Bartonella is a common one.  IF YOU LIVED AT OR NEAR MBA/SANTA CRUZ COUNTY and have suffered a mystery illness, please consider Lyme, and get tested by a Lyme literate doctor.  Palo Alto is a good place to start.


Ok, so that's my gripe.  Peace out.