Monthly Archives: December 2012

(part of) my next move

a good friend of mine who was diagnosed with stage IV colon cancer planted a seed many months ago about Gawler retreats. She has been to their 10 day cancer retreat twice. she believes it to be life changing, life affirming, and beneficial in her treatment. i should trust her, since at this point she has proved her doctors wrong and is doing better than they thought she would.

today i was cruising a MS forum and came across a research study that focused on an “Australian 5 day retreat” that improved quality of life for attendees–the Gawler retreat.

seed just sprouted.

this was definitely something that has been in the back of my mind since she mentioned it, but planning it felt overwhelming. K and I have been planning on a trip for many months, but so far no destinations have felt right or “stuck.” we have basically considered every country in central and south america, along with most of southeast asia, australia, AND hawaii!

it seems a bit serendipitous. i’m really hopeful we can make this work and that K will be interested in going. plus, we would get to see all of our australian friends again. win-win?

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the only way out is through

friday was the last day of my internship. i did well. things on the home front were stable (as opposed to last year when it seemed like the cosmos were conspiring against me), and i felt pretty good. thats not to say that by friday evening i wasn’t ready for bed at 8, and that i saved most of my energy for the internship at the expense of my social life. but hey, i got through it, and even did well enough to get a potential job offer out of it. so yay me!

as far as my MS treatment goes, i guess that was an expense of the internship as well. i am what the docs would call “non compliant.” twice now i have tried daily injections and twice i have failed at it. at this point, trying to stick with something that i have failed at twice is doing nothing for my body or my psyche. nobody likes to fail, and especially with something as important as disease treatment.

so, in an effort to move forward and do something positive for myself i am currently back at the proverbial drawing board trying to plan out my next move. I have big issues with drug companies, with the medical system in general and also with jabbing myself with a needle nightly. i guess i could get over that last point (no pun intended…) if i truly believed in the medications. but at best i am a skeptic, at worst a cynic. i have a hard time forming decisions about my health based off of published study results that have been funded by the drug companies themselves. especially in light of a recent study published in JAMA that showed absolutely no reduction of disability from using interferon medications to treat MS.

to sum it up, i have decided that nightly shots of unknown benefit and exorbitant cost don’t do anything for my skeptic’s heart. and to be frank, if i’m going to be on treatment that no one can tell me for sure works, i’d rather be on one that doesn’t hurt, leave welts, bruises, and permanent dents in my skin from the destruction of fatty tissue, thank you very much. 

this is what my body looks like after a week of shots. what you can't see are the hard, itchy knots, lumps, and sunken in areas of fatty tissue destruction. it's not "just a shot."

this is what my body looks like after a week of shots. what you can’t see are the hard, itchy knots, lumps, and sunken in areas of fatty tissue destruction. it’s not “just a shot.”

i am looking into the oral medications now. the one i am most interested in knowing more about, as are many people with MS is BG-12. this medication looks promising. BUT it’s release has had many hold ups and at this point no one can give a date for when it will become available. until that happens i am seriously considering LDN. so far, there are not many studies showing it’s benefit (mostly because it is a generic form and not made by a multinational billion-dollar grossing drug company…there’s that cynicism again), but many people have done very well on it. since even the big drugs for MS can’t guarantee me much of anything, i feel that because of the low cost, low side effects and oral dosing it’s worth a try. heck, it can’t be worse than doing nothing like i am right now.

so that is what has been going on with me. i’m still trying to get insurance of some kind. COBRA is taking forever to get into place. i have a $7,700 MRI bill that needs to be paid. i have to notify the study that i have been noncompliant. and our adorable dog is still limping. we are trying to get her insurance coverage but pet insurance is modeled after the broken, unfair human system so that has been tricky as well.

hi

i just had a fantastic weekend of holiday parties and a wine tour in Napa and now i am enjoying a day to myself in my pajamas. things have been ok and its great that 15 months after diagnosis i can even think that. lately i feel like i have been able to take bigger risks and do more without having anxiety and baggage hanging over me. its nice that i don’t feel like i am living in a minefield all the time anymore. diagnosis sure is a mindfuck, at least it was for me. at this point i am trying my best to forget MS is even a part of my life. i want to live like i did before, albeit with a few more doctors appointments, pills, and a LOT more intention.

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