With Nana and Papa

With Nana and Papa
Family Times at Flathead Lake

Thursday, July 19, 2012

Hope has Four Letters, Too

The neurologist diagnosed me with "subcutaneous allodynia," which basically means "pain underneath the skin when there is no reason or cause for pain."  He is treating it as a static migraine with strong medicines including prednisone. I am reluctant to take these but so exhausted from the pain that I will try them for the week before my brother's wedding. It's funny how dancing with my family became much more important than any competition, music necessary for life when medals are not.

My other doctor, affiliated with my ob/gyn and in tune with illness as a systemic issue, received my food sensitivity test**  results on Tuesday. I do not have any allergies as they are traditionally defined, and this threw my internal medicine doctor off the scent of the root cause of my problem, but I do have many strong gut sensitivities to food. When the suspect foods (originally gluten and casein and now almond, soy, oat, corn, chocolate, buckwheat and pecans, as well) break down the intestinal tract and start circulating in the body, my immune system attacks.  

We (the doctors, my family, and I) are hopeful that if I stay on my newly restricted diet for 6 months that I can calm my immune system and end the migraines. Well, hopefully the migraines will end long before that time but it may take that long to re-introduce the suspect foods. My sister had this same problem two years ago - I'm not sure why it took me six months to recognize that my problem might be similar to hers - and restored herself to health by abiding by her specific diet. 

I hope and pray that this journey takes a new direction. Healing won't be quick. It took me 8 months to get into this predicament so probably will require more than 48 hours to get out. I am thankful for hope and for the opportunity to act on my own behalf. Perhaps now I can build back what I have broken down.

**The test was done by Genova Diagnostics. Please get in touch with me if you have any interest or questions about it.

Monday, July 16, 2012

Pain is a Four Letter Word

"One thing about pain: it proves you're alive." - Ashleigh Brilliant

My head is on fire. It's been on fire for eight weeks with little containment. I have seen my ob/gyn, internist, chiropractor, dermatologist and am scheduled for the neurologist tomorrow. Medications prescribed include cortisone, other steroids, vitamin B, anti-neuroinflammatories, Vicodin, other painkillers. Rest has been suggested, exercise too. Allergy tests came back negative so I tried food sensitivity tests. No news yet. I eagerly await the absence of pain. I've tried to make it my friend but at best we are civil to one another.

Perhaps you have been here: the long stretch of not understanding the problem. We hope it is the homestretch, but no one can tell us - no final lap bell rings, no spectators cheer. The world goes on. Kids demand attention beyond the meal preparation, laundry and carpool service that proscribe summer days. When we hide in the basement for its quiet cool, they come to find us, angry that we hide, that we are less than.  Husbands patiently hold up under repeated bouts of tears, sleepless nights, many (many) dollars spent.

Heat makes things worse - endless repeats of 100-degree days are a cruel joke. Yet life goes on. People get married, kids swim and compete, friends need attention. Volunteer responsibilities require time and effort. My hair falls out repeatedly - not enough for anyone else to notice, apparently. I never know if their noticing would make things better or worse.

Thank you for your prayers and for your kindness. I apologize for my absences, for my shortnesses. The summer has been hard. I am sure there are gifts here, I just need some time to find them. Love to all.