by Rachel Dykoski | July 7, 2009 • 
We made it to Mount Rushmore in May, despite the MS and CLL and B-cell leukemia
I’ve been distracted for many months and two months ago I finally found out why I’m just too dang tired to do anything. Case in point, my TCDP editor said I could cover the Whittier Alliance’s annual meeting, where they elected new members to the neighborhood board, celebrated residents and businesses from the community. It was a short meeting within walking distance of my home. By the time I had uploaded the pictures taken at the event, it took every ounce of clever stick-to-it-iveness to label and save those 12 pictures on my PC. I couldn’t write a lick. My brain, body and spirit was bone-ass tired and it freaked me out. I assumed my Multiple Sclerosis was having a spring fling. But I was wrong.
| Rachel Says – Thoughts, from the political to the personal, by Rachel Dykoski |
Her name is chronic lymphatic leukemia (CLL) and the bitch owns my ass. I met this wily minx while on the road of patient advocacy. It’s what I do. I live with multiple sclerosis and have had to self-educate and question medical practitioners, insurers and the lot of ’em for almost a decade in the course of disease management, child birthing and their subsequent rearing. And I’m one god-smacked MFer. More on that later.
In dealing with a chronic disease, a person is challenged to partner with health practitioners. And there are many ways to self-improvement and maintenance. Sometimes healthy-living advocates like your co-op’s herbalist, yoga instructor, even your favorite ecological-blogger slash friend can raise your knowledge-base and expand your treatment options.
Western Medicine has been my high-bar for health care, but I’ve appreciated, utilized and seen the skilled services that alternative medicine and treatments offer. The US Department of Labor agrees with me. Nah huh! Check it out here — see Related Occupations.
I was feeling like every day was an MS day since January. Cognitive disturbances and execution are what I encounter, mostly. (What do I mean? See here for more info: …or you can visit here).
I turned 40 this February and thought that “the change” was underway as well. My monthly friend had become a banshee with colic. I had night sweats and could spike a fever or get the chills on a regular basis. Happy Birthday to me!
My MS is managed by a neurological team at a clinic in south Minneapolis. Years earlier, they found a disease-modifying med that I tolerated and to this day accept my lippy opinions on various nerve-pain medicines. I was prescribed a “new to me” nerve-pain drug in May of this year and didn’t trust it, viscerally.
I had been made ill by so many other nerve-pain drugs that I went to my internist for some advice. My general practitioner helped by proposing a base-line check of my vitals, blood work, and physical before we began the new-to-me Rx.
He partnered with me by informing me of what the drug is known to do and ensured that we would know where I was health-wise before I popped the first pill. That’s self-advocacy. And I’m very lucky to have an empowering physician. And we are blessed to have health insurance that covered the lab tests.
Wouldn’t you know, there was more intrigue? When my white blood cell count came back 41 times higher than the norm, my internist ran more blood work and diagnosed me with CLL. Over the phone. Not his choice. I was bird-dogging him for several days and I think he didn’t want to do it, but I had a schedule to keep damnit. And camping plans at Mt. Rushmore, thankyouverymuch for Memorial Day weekend. I wanted to know if I should keep my plans or check into a hospital. He was gracious and encouraged us to keep our camping plans, but to see him when we got back.
What I’ve learned since then is that I have a type of leukemia that, like my form of MS, is a slow-steady/chronic disease that I’ll keep around like luggage. You never get rid of an old suitcase, do you? Nope, if it’s out of fashion, you just use it for storage in the basement of your home. It’s there, you just can’t see it. For information about my lovely new label, visit this website.
It’s confirmed: there’s a 70-some-year-old man with Russian heritage trapped inside my body. Call me Maury!
More on being punked by fate: Life’s too short for regret. I have two young kids and a love/partner, family and friends in my life that are worth fighting for! I’m gonna’ go camping whenever I can. I renewed my wedding vows on July 4th in celebration of our love and patriotic moxie. I now know (thanks to the professionals at Mayo Clinic’s hematology department) that I have a more aggressive form of B-Cell leukemia, blood cancer. Armed with such knowledge, I’ve slowed my roll to kick this witch in the nuts with heavy-handed toxic drugs. Activism will have to wait. After I shut this c-word up, I’ll holla’ back.
Peace!
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