New York Times: Supply of Methotrexate May Run Out Within Weeks

“This is dire,” said Valerie Jensen, associate director of the Food and Drug Administration’s drug shortages program. “Supplies are just not meeting demand.”

The drug is methotrexate, and the cancer it treats is known as acute lymphoblastic leukemia, or A.L.L., which most often strikes children ages 2 to 5. It is an unusually virulent cancer of white blood cells that are overproduced in bone marrow and invade other parts of the body.

The cancer commonly spreads to the lining of the spine and brain, and oncologists prevent this by injecting large quantities of preservative-free methotrexate directly into the spinal fluid. The preservative can cause paralysis when injected into the spinal column, so cannot be used for this disease. Methotrexate is also used to treat rheumatoid arthritis.

Read More: http://www.nytimes.com/2012/02/11/health/policy/supply-of-methotrexate-a-cancer-drug-may-run-out-soon.html?_r=1

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Rheumatoid Twenty Something: Why Social Media Is Essential For Support!

“The importance of social media is often forgotten and under appreciated in my own personal opinion. Just think about it, it allows people around the globe to talk and interactive with each other like never before. It’s truly one of the wonders of the world wide web. But it’s even more essential in the support of those with chronic illnesses such as rheumatoid arthritis. After all, anyone who suffers with a painful chronic condition know how lonely they can be. Your family and friends might be the most supportive people you know, but they still don’t truly understand what it’s like to live on a daily basis with agonizing pain and so much more. This is where the collective support of social media sites is essential.”

Read More: http://rheumatoid20something.blogspot.com/2012/02/why-social-media-is-essential-for.html

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Lessons Learned From My Blind Dog

Earlier today, I administered my first injection ever. No, it wasn’t to myself…nor to any other person. It was an insulin shot to my 9 year old dog Alva, who was diagnosed with diabetes only just yesterday.

And when we received the results of her lab work a little over 24 hours ago, they actually came as sort of a relief, even though they indicated that she did indeed have diabetes. At the end of last week she suddenly went blind. This, combined with a recent noticeable increase in her drinking and urination, were big indicators that we were probably dealing with diabetes. Now, we at least know what is wrong, and can work on controlling her blood sugar levels with twice daily insulin shots.

When we realized that she was blind (it practically came on overnight), I was heartbroken. Even though I read that dogs adapt quickly to blindness, and that sight is actually only their third most important sense after hearing and smelling, it was difficult to see her initial reaction, and her initial inability to move around like she once did. In order to console myself a bit, before I got depressed and spiraled back into a flare, I decided that I would use this experience as an opportunity to learn even more about coping with disability. In this case, however, the disability would be hers, and not mine.

On Day 1, she was reluctant to move around much beyond her water bowl and her food bowl. By Day 2, she was already walking around the house a little more, and started exploring the area of the patio immediately outside the doggy door. By Day 3, she was following me around the house, and–though still a little reluctant–was jumping back up on the sofas and on the bed. By Day 4, she had explored (on her own) all three sides of the outside of the house, and was occasionally going out during the evening to bark. (It was at this point where I stopped constantly worrying about where she was.) And today, on Day 5, I just found her waiting for me in her usual place next to the table, as I sat down to have lunch. She also greeted me at the front door, when I returned home from physical therapy.

And what have I learned about my dog, as I’ve seen her adjust to her loss of vision over the past few days? A lot. I’ve noticed that even though her confidence was quite shaken at the beginning, she continues to regain her confidence with each new day. (We’re probably going to do our first outdoor walk this coming weekend.)

I’ve seen her continue to do things that she enjoys doing…like going out to bark for about half a minute every hour or so (I’ve always said that she’s on night duty, and is making the rounds.) She’s back to napping in her favorite spots, whether it’s the pillow on my bed or the ottoman in the living room…and like I said, she’s back to greeting my at the door, and slobbering me with kisses as soon as I sit down at my desk.

I’ve also noticed that even though she occasionally walks into a piece of furniture or corner of the wall, she never gives up. She just makes the appropriate adjustment, and keeps on moving forward. Every time she stumbles, she doesn’t stop, and tell herself that she’s a failure…in fact, she does quite the opposite: she know what she wants to do, and she gets it done.

Lastly, I’ve also noticed how capable she is of using different aids to move around the house and yard. Sometimes I see her walking straight towards a wall…and my heart starts to race and I wonder if I should call out and warn her. But a split second before running into the wall (whether it’s a change in temperature, a change in lighting, or both…I don’t know), she makes a quick 90-degree turn without so much as even brushing a hair against the stucco. And once she’s in the house, she continues to use walls as a guide, as she often walks around the perimeter of spaces to get from one room to another.

There are a couple of behaviors that haven’t returned yet, mainly her afternoon wrestling sessions with her younger pug brother Oliver. She’s not running as much as she normally does, although she is once again sprinting to the front door anytime the doorbell rings, and double-times it whenever she thinks (rightly or wrongly) that I’m handing out snacks.

I’ve frequently heard stories in the past about how quickly and how well pets adjust to problems such as blindness or a lost limb. While I’m still a little sad that my dog has had to encounter these challenges over the past week, I’m proud of her, and of her ability to so quickly overcome the biggest obstacles of being blind. Most importantly, I feel fortunate to have been able to see–firsthand–how animals are indeed able to adapt so quickly to disability.

I’ve learned a lot of lessons from Alva over the past week, and I hope to be able to continue to learn even more lessons from her in the future.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy

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How To Be Sick: Discussion 5

“…Buddhism defines an emotion as a thought plus a physical reaction to that thought.” —Toni Bernhard

As we start reading the section of the book titled Finding Joy and Love, we are introduced to the four brahma viharas, or sublime states.

  • Metta—loving-kindness; wishing well to others and to ourselves.”
  • Karuna—compassion; reaching out to those who are suffering, including ourselves”
  • Mudita—sympathetic joy; joy in the joy of others”
  • Upekkha—equanimity; a mind that is at peace in all circumstances”

The first chapter in the section focuses on cultivating joy in the joy of others (mudita). For people who are facing new physical limitations due to their chronic illnesses, this can be a way of turning painful responses (envy) into wholesome responses (joy).

The second chapter in this section talks about the act of well-wishing toward yourself and others (metta). The essence if metta practice is settling on a set of phrases, and silently repeating them over and over. “The specific content of your chosen phrases doesn’t matter so long as their theme is well-wishing. It’s the act of listening to and contemplating the meaning of the phrases as you repeat them that, over time, softens and soothes the body, mind, and heart.”

Discussion Questions

  • Talk about a time when you really wanted to, but were unable to, participate in a certain activity or social event. When you knew that you were not going to be able to attend in the way that you had hoped, what feelings did you experience?
  • Describe a personal example of cultivating joy in the joy of others.
  • We are introduced to various metta phrases, including the following by Kamala Masters: “Whether sick or well, may your body be a vehicle for liberation.” Please share a metta phrase that you have found to be particularly helpful.

This post is part of RA Guy’s Book Club for “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers,” by Toni Bernhard. For a complete list of discussions, please click here.

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Lindsey Thies

Lindsey Thies

Real Profiles of Rheumatoid Arthritis
Photos © Lindsey Thies

Name?

Lindsey Thies

Age?

29

Location?

Norwalk, Connecticut, United States

How long have you lived with RA?

I was diagnosed after 10 years of symptoms at the age of 20. So 19 years total.

What advice would you give to someone who has just been diagnosed with RA?

Be your own advocate and learn all you can. Also don’t let the doctors bully you, you are their boss!

Do you use any mobility aids?

None at this point.

How has living with RA helped to improve your life?

My disease has given me compassion, and that fighting spirit to make my dreams come true no matter what.

Do you have any visible signs of RA?

My hands and feet are a disaster, plus the visible signs of taking prednisone for too long.

Can you please describe some of your favorite coping strategies for living with RA?

Two years after diagnoses I got a puppy and she brought me out of my funk. Also Facebook support groups really helped me. Also don’t be to proud to seek professional help when you need it, when I started college I had a hard time coping with all the new responsibilities and RA.

Can you please describe your current medical (traditional and alternative) treatments?

Well I have been trying to get pregnant for 2 years now, so I can only take prednisone and plaquenil. I really have to work on reducing my stress which always benefits my RA.

Is there anything else about yourself that you would like to share?

My dream was to get my college education and have a great job. I started college 4 years after being diagnosed with RA. I am currently about to graduate and have a job working as a product developer for Pepperidge farms. Also while in college I studied abroad in Guangzhou, China for 6 months, by myself!! The point is I thought my life was over when I got my diagnoses and it turns out it had just begun!!

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