Too Much Time on My Hands

I am honored to have the opportunity to share more of Meg Newark’s writing.  In her guest post today, she shares the journey many of us walk with rheumatoid arthritis and methotrexate – from utter frustration with our condition to the staggering side effects of an archaic – yet maddeningly effective (for many) – drug.  Her wicked sense of humor is palpable, her writing poignantly relatable.

As I’m in the middle of a flair, Meg’s writing particularly strikes me today .. While people often marvel at my positivity amidst sometimes-overwhelming odds, it can still be difficult to remain strong, hopeful and courageous.  I find comfort in her prose and our shared community of strength.  People just like YOU and Meg keep me going.

Enjoy, my Friends.

By Guest Contributor, Meg Newark

Watching Betty White’s Off Their Rockers leads me to think that we as patients need a similar concept show. That show doesn’t run anymore but it was like a elderly version of candid camera.

Betty_White_s_Off_Their_Rockers___NBC

The sick punking the healthy! Calling hilarious attention to all the things we deal with that they simply just don’t get.

After all, I’ve been punked by my immune system. It would be a shame not to pass that sh*t along.

I’ve been outlining my sure to be awkward and cringe inducing reality show concept.

Should it be a vote off like Survivor? The tribe has spoken: you clearly couldn’t hack it like we can. Or a single decision like The Bachelor? I only have one remaining rose and I will be giving it to…me. Because you get to watch and laugh but I am the one who gets to go home with it. I assure you that earns me a rose.

But not to steal anyone’s sparkle, I much prefer a good old gag show. Why? Because I’d like karma to point out and fix what I consider are injustices of this disease by making us laugh.

Track with me here.

Pet peeve: athletes. Runners specifically. Because I miss it! I DREAM ABOUT RUNNING! How about we commandeer a 5K course and rough it up a bit? Not a mud run with visible obstacles. Better…Make people sprint through a field of cow pies with hidden holes, invisible tree roots and uneven terrain. That is what running would be like for me now. A flat surface is scary and unknown…and this one time I twisted my bad ankle because I slipped on a nice wet pile of crap. That really added something to the experience of the ankle twisting.

runner

Pet peeve: RA pharma reps who come into my doctor’s office wearing sky high heels. Taunting me. How about we install some grated flooring in the lobby and watch them get stuck? Because that’s what high heels are now. I put them on and then can’t go anywhere.

high heels

Pet peeve: ‘just take a pill for that.’ Ok, I am obviously not going to recommend drugging anyone. But to understand that feeling of helplessness and frustration and anger, let’s get a gaggle of three year olds. Gaggle defined as 6-10, whatever the mandate is for safe class/daycare size. That should be plenty! We’ll treat them to a lunch of cotton candy and Mountain Dew and let them skip their nap. Then we will hand deliver them to the person who suggests ‘taking an Advil’….to watch for a couple of hours. We’ll pop in to offer helpful, know it all, busy body advice from time after time. ‘You just need to calm them down.’ ‘Its just a child, why can’t you just read them a story?’ And my favorite that I overheard at Target recently ‘Lady, your kid needs to stop crying.’ Throw in some condescending and judgy judgy looks. Maybe a surprise clown or two. I think that would be a fair comparison!

I think I’m onto to something. Now it just needs a name.

Speaking of people whose bodies are trying to kill them, apparently God has heard me making fun of myself and decided to punish me with such a severe flare that I became practically bed-ridden last week.  I got in to see my rheumatologist recently and she put me on a drug cocktail that includes going back on a drug that starts with “meth” and ends with “all-your-hair-will-fall-out-if-you-don’t-take-a-daily-antedote” because it’s a chemo drug.  Why does it work for arthritis?  No one knows.  True story.  It’s in the pamphlet.  Also, a side effect of the drug is that even though it’s a drug designed to battle cancer, IT CAUSES CANCER.  Like, not a lot but enough that they have to tell you you may get lymphoma at any time.  Yay.  And my arthritis has spread so now I can barely walk sometimes.  I can only assume that in the next month I will be writing using only my tongue.  I’m unemployed and would like to cross my fingers that the chemo drug will work but I must face the fact that I can’t cross my fingers because I EFFING HAVE ARTHRITIS.  That’s why I’m going to try out some new money-making ideas I can do from home, like prostitution or knitting.  Except it turns out I can’t do either of those well. Kidding mom… 

Warnings on Methotrexate:

“Some side effects of methotrexate may cause death. You should only take methotrexate to treat life-threatening cancer, or certain other conditions that are very severe and that cannot be treated with other medications”

Which sounds ungood, right?  But actually I had been doing ok for the last couple months so technically the worst part was just the treatment itself because it makes me throw up all the time.  So last week I asked my doctor to cut my dose to 1mg injections which was awesome because I stopped throwing up but then I woke up this morning and I can barely walk.

Awesome.

And what really sucks is that NO ONE EVEN KNOWS WHY THIS DRUG WORKS.  They’re guessing it *may* work because it screws up your immune system and keeps cells from growing properly so your body attacks your immune system instead of your joints.  Because who needs a working immune system when you have an autoimmune disease that makes you so sick that your best option is to take a drug that can kill you?  Basically it’s like being stabbed in the neck to take your mind off your stubbed toe.  And that’s why today my feet feel like tiny zombies have been gnawing on them.  See what I did there?

Full circle. Moral:  Rheumatoid arthritis is worse than being attacked by baby zombies.  I think someone has said that before.  Probably Hemingway.

baby zombie

****

About Meg:

At the end of my 29th year, my immune system, in an act of undoubted overachievement, decided to produce too much of a good thing. Suddenly, I found myself dealing with a diagnosis of rheumatoid arthritis, ulcerative colitis and now, Sjogren’s Syndrome. After dates with a million doctors, chronic pain, and a lot of fear and questions (including, will I ever get to wear heels again?), all the while trying to keep up with my busy life and a newborn…I became this new person. No longer a police officer and fighting crime…now just fighting to live awesome in spite of pain. I write humor bits on my FB page about life and my family. Someday my kids will get all these bits printed out in a book for them so they can see I fought everyday to be the best I could be for them!

Advertisements

2 thoughts on “Too Much Time on My Hands

  1. Renfrow Kathy says:

    Hi Lora – I hope this finds you well.  Since we are FB friends I have been able to follow your life, marriage, move to Austin and now, your RA diagnosis.  I was also diagnosed with RA in late 2011 after almost a year of unexplained pain, mostly in my hands and feet.  When my general physician and chiropractor couldn’t figure it out I started talking to others about my symptoms.  A friend and coworker of mine recommended me to her general physican whom I was lucky enough to get in to see right away.  As soon as I told her my symptoms and what had been happening to me she immediately said she thought I had RA.  She recommended me to a rheumatologist here in Reno and again, I was lucky to get in to see her right away.  I had blood work done and my RA factor was 187.  She told me she was very sorry but that I definately have RA and, of course, prescribed methotrexate and anti-inflammatory drugs.  I told her I was going to research RA online which she discouraged me from doing.  Sorry, not my way of doing things!  When I first started researching RA and other auto-immune diseases and the horrible medications that are typically prescribed like methotrexate, I was so depressed and scared, I cried everyday for several months.  I also made the mistake of reading blogs of people who’d had RA for years and the horrible other diseases they also had supposedly related to having RA.  Every blog I read was doom and gloom and pain.  Then there were the side effects of methotrexate and other drugs commonly prescribed, how they would work for a while and then something else would have to be tried, then something else, etc., etc.  I was freaked out by the thought of taking methotrexate of which I had a bottle of in my bathroom but only took one of when I came upon a book by Henry Scammell called, “The New Arthritis Breakthrough: The Only Medical Therapy Clinically Proven to Produce Long-term Improvement and Remission of RA, Lupus, Juvenile RS, … & Other Inflammatory Forms of Arthritis”.  It’s a bit technical but it gave me hope that there was definately another treatment protocol other than toxic, cancer causing, debilating drugs out there for me to try.  I also picked up The Road Back by Dr. Thomas McPherson Brown which leg me to a website dedicated to the belief that RA can be treated with much less toxic drugs.  Through this website (I can’t think of the address for it now but will find it and forward to you later) I found a doctor in Sacramento and one in Riverside, CA that prescribe to the belief that RA, among other auto-immune diseases, are caused by bacteria and environmental issues and can be treated with a better lifestyle and diet along with less toxic drugs.  I actually spoke with patients from this website that gave me hope that the doctor in Sacramento could definately help me.  So, I made the 2 hour drive from Reno to see him.  He did blood work which showed I did have infections in my body (you’ll have to read the books about microplamas, etc. as it’s a bit to technical for me to explain to you).  He prescribed docycyclene and plaquenil, vitamins, folate, monolaurin (a natural antibiotic) and an anti-infalammtory diet.  When I started this treatment I couldn’t even put my own shoes on, let alone tie my shoelaces, and my wonderful boyfriend, Jamie, would do this for me every morning.  I sometimes came to work in my slippers as my feet hurt so much.  I was having trouble cooking, which like you, I love to do as it’s like therapy to me. I would start to chop something up and would have to ask Jamie to come finish it for me.  This really sucked!  If I carried a bag of groceries with my hands instead of using my wrist, my hand would hurt horribly.  Anyway, within a relatively short period of time the antibiotic started to work and 2 years later, while not completely pain free, I can do pretty much anything I want to.  I don’t have any joint swelling at all.  My hands and feet do hurt at times, but usually when I’ve been on my feet too long, wear shoes I shouldn’t etc.  I’m definately 95% better than when first diagnosed.  Since the doctor in Sacramento was so inconvenient for me to see on a regular basis, especially in the winter when I didn’t want to drive over the pass, I tried another rheumatologist here in Reno.  What an ass he turned out to be.  When I told him about the antibiotic therapy I was on and told the name of my doctor in Sacramento, he proceded to completely try and discredit him and said this therapy would never work and he was a quack and not a real doctor.  He even went so far as to have his nurse bring the Doctors Desk Reference book into the exam room to look up my doctor.  Well, of course he was listed there and is a graduate from Stanford!  Needless to say, I’ve never gone back to this jerk.   As I mentioned above, there is also a doctor in Riverside, CA who subscribes to the antibiotic and more natural therapy for RA treatment.  I don’t know if you remember but I am from Southern California where my daughter, granddaughter, best friend and all my nieces live.  So, I took a trip down there last April to see Dr. Franco.  I spent about 6 hours over a 2 day period at his clinic where he did every test you can think of and exrayed my entire body.  He spent so much time with me and was the most wonderful person.  It had been about 4 months by now that I had been taking the docy and plaquenil that the doctor in Sacramento had prescribed and my RA factor had gone from 187 to about 27!  He says I am doing very well.  Obviously, I can’t see him on a regular basis, but he refills my prescriptions every month (which cost me next to nothing, by the way).  He sends me lab packs (a small styrofoam ice chest with specimen tubes and ice pack) that I take to my local lab who overnights the blood samples to him.  His clinic has it’s own lab where they do all the testing.  I just sent my latest lab pack to his office 2 weeks ago and am waiting for the results which should be ready in another week.  I’m positive the results will be very good.   I know this is getting kind of long, but after reading your articles and those of your guest, I just had to give you girls this information for you to read and research yourself.  I truly believe that there is better treatment options for you, and others.  I know it’s working for me.   Check out the books I mentioned above and look at Dr. Franco’s website:  ArthritisCenterofRiverside.com and let me know what you think.    I hope you have a painfree day!   Warmest regards, Kathy      

    Like

    • Kathy,

      Thank you for sharing this! This is fantastic information, and I’ve been going through it since the day you commented. I’m ordering the books you recommended and I check out the Arthritis Center of Riverside – he seems like such an incredible doctor!

      I completely agree with you – I feel that there’s GOT to be a better way to treat RA…. That’s one of my missions on this journey – to shed light on other treatments that are effective.

      I am so appreciative of you sharing your story and insights – more than you could ever know.

      Hugs,
      Lora

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s