Fibromyalgia

Spoil Yourself, Support Spoonies

emilys-posh-fundraiser
Buy Perfectly Posh

 

A good friend of mine is a consultant for Perfectly Posh, and for the next two weeks she is donating proceeds from this sales event to help me reach my GoFundMe campaign goal.

5 Reasons to Shop Now

  1. Practice #SelfCare and take a little time to pamper YOU.
  2. Perfectly Posh’s naturally based pampering products are made in the USA, Cruelty Free, and under $25! (Several vegan products to choose from!)
  3. Start your holiday shopping conveniently online and avoid the mall.
  4. Support two Spoonies with one purchase. Not only will you help me fundraise, you’ll help a Spoonie-based home business.
  5. You will love, love, love Posh products. Try my personal favorites, the Nuts About Pistachio body scrub and the I’m Turning Blueberry face mask.

Place your order by September 25. Visit the Perfectly Posh page and click the Shop Online button.

 

Medical Cannabis

Response from Rep. Rodney Davis Re: Medical Marijuana

Just dropping in on a Saturday to say that Rodney Davis did eventually respond to my letter. For Senator Durbin’s response and more background, see the post: Make Medical Marijuana Legal in the US: An Open Letter to Senator Dick Durbin.

That Davis (or his staffer, rather) decided to go with “Mr.” is amusing, but basically of no import. Much as I hate to agree with Davis, I gotta say this part gets my approval:

“I believe we shouldn’t handicap the doctor patient relationship and that doctors should be able to provide the best possible medicines for their patients on a case by case basis – including medicinal marijuana.”

Wish he had the same hands-off approach to uterii, but that’s another topic for another day.

I’m also glad to hear that he voted in favor of prohibiting the U.S. Department of Justice from interfering with state medical marijuana laws. But it’s still necessary to outright legalize medical marijuana at the federal level, since a major problem with the discrepancy between state and federal laws prevents doctors and administrators from recommending cannabis to patients.

They can pass legislation take away rights in a heartbeat, but granting them or giving them back is next to impossible. Why is that, I wonder?

Congress of the United States // House of Representatives // Washington, DC 20515
September 9, 2016
Mr. Emily Suess
XXXX X XXXXXXX XX
XXXXXX, IL XXXXX-XXXX

Dear Mr. Suess,

Thank you for contacting me regarding legislation related to marijuana.  It is important that I hear from constituents in my district and I appreciate the time you took to share your thoughts.

As your member of Congress, I have supported efforts to allow industrial hemp production.  Additionally, I voted in favor of an amendment in the 113th Congress that would prohibit the U.S. Department of Justice from interfering with state medical marijuana laws and I cosponsored H.R. 5226, a bill that would remove therapeutic hemp and cannabidoil from the definition of marijuana, and allow it to be used to treat children and individuals with epilepsy.

Furthermore, too many of our veterans are suffering from PTSD and sadly, an unacceptably high number of our veterans have taken their own lives.  I believe we shouldn’t handicap the doctor patient relationship and that doctors should be able to provide the best possible medicines for their patients on a case by case basis – including medicinal marijuana.

Know that I appreciate your comments regarding marijuana legislation and I will keep them in mind if legislation regarding this issue comes to a vote in the full House of Representatives.

Please let me know if my office can be of assistance to you in the future.  If you would like to stay informed on what is happening in the 13th District, I encourage you to sign up to receive my e-newsletter by visiting https://rodneydavis.house.gov/contact/newsletter.  It is truly an honor to serve you in the United States Congress.

Sincerely,
(signed)
Rodney Davis
Member of Congress
RD/JB
Medical Cannabis

#MedicalMarijuana in the News: September 9

know-your-cannabis-infographicHere are popular medical marijuana headlines for the week ending September 9, 2016.

Cannabis’s Effect on Children’s Epilepsy Being Studied by University

Researchers at the University of Sydney will partner with Epilepsy Action Australia to examine if cannabis-based extracts are effective for treating childhood epilepsy. Medical is still illegal in Australia.

Illegal Patient Profiles: Chronic Pain

“The number one use for medical marijuana in the United States is for chronic pain. Opponents of medical cannabis say that ‘chronic pain’ is a cop-out that people use as an excuse to get some legal weed and get high.”

By the way, did you know that September is Pain Awareness Month? Follow #PAM16 on Twitter.

Pain Patients Are Flooding into Minnesota’s Medical Marijuana Program

Minnesota’s medical marijuana program is tightly controlled with high costs and low enrollment. Advocates are hoping that pain patients might turn the tide.

VA Data Gives Detailed Picture of Veterans Using Medical Marijuana

“A review of Veterans Affairs Canada data on medical marijuana users, obtained by The Canadian Press under the Access to Information Act, suggests the number of users has grown most dramatically in those parts of the country where marijuana shops and clubs cater to a local population of military veterans.”

Medical Marijuana Patients Face Long Drives, High Prices

I can relate.

“Patients who use medical marijuana in the state of Delaware say they still struggle to gain access to the drug legally and pay exorbitant prices when they do.”

Why Medical Marijuana Patients Can’t Buy Guns

Some are still talking about the no-guns ruling for those with state-issued medical cannabis carads.

“Though a growing number of states are legalizing it for medical or recreational use, marijuana remains illegal for any purpose under federal law, which considers the drug to have a high potential for abuse and no accepted medical use.”

Fibromyalgia

5 Less Obvious Ways Chronic Illnesses Cost More Money

While Martkin Shkreli and Heather Bresch continue to make headlines, regular people struggle. You don’t need to buy Daraprim or an EpiPen to know that the cost of drugs, and healthcare in general, is prohibitive for too many Americans.

So, yes, let’s call out individuals for making disgusting salaries.

But let’s also remember that the system allows it, and it needs to be changed. Especially for people with chronic illness.

But we don’t just pay out the ass for daily meds, medical testing, and routine doctor visits. We also pay more than able-bodied people on items often taken for granted.

whole-foods-orange1. Convenience Foods

Remember when the internet was scandalized by Whole Foods and the already-peeled orange? People called the $6 food “the Ultimate in Bourgeois Laziness.”

But for someone with RA, for example, a peeled orange can be a healthy snack alternative. That it costs a chronically ill person $6 to acquire shows what sacrifices patients have to make to eat healthier.

If you’re generally healthy, you might grab this once in a rush to find something convenient on your way to soccer practice and not give it another thought. If you’re a fellow chronic, you would probably wince at the price tag.

What if you wanted to eat an orange every day? Or even once a week? It’s cost-prohibitive, that’s what.

2. Utility Bills

Fibromyalgia causes a host of problems for me, including extreme temperature sensitivity. That means keeping the house at a steady 70 °F throughout the summer. And believe me, I pay for that comfort when I get my Ameren Bill every month.

A small jump of just two degrees might save me some money on my bill and be better for the environment, but at what cost to my health? Sweating, headaches, increased blood pressure, and the inability to sleep.

Guess which option I’m going to choose as a chronic patient?

3. Pillows

my-pillowYes, pillows. The good ones cost insane amounts of money; the affordable ones either cause more pain or fall flat so quickly you have to keep spending money to replace them.

It’s not a frivolous concern either. Sleep is important for everyone, and patients with chronic illnesses are no exception. Insomnia, poor sleep, and not enough sleep can intensify pain and impair the body’s ability to heal and restore itself.

4. Toilet Paper

poop-emoji-pillowI’m not going to get too graphic, but can we have a moment of silence for all the chronics who suffer from ulcerative colitis, Crohn’s, IBS, and similar diseases and conditions?

If you’re going that frequently, that cheap institutional toilet paper is NOT an option. Don’t you dare suggest it.

5. New Clothes

And I’m not talking about getting the “essentials” from Vera Wang’s new Fall line. I’m talking about replacing clothes with items that fit our ever-changing sizes. (Weight loss and weight gain are prevalent symptoms, sometimes caused by chronic illnesses themselves, and sometimes a product of prescription drug side effects.)

As a person’s ability to dress herself deteriorates, there’s also a need to switch to clothes that are easier to put on. I’m talking front-closing bras, elastic-waisted dress pants, and shoes without laces, straps, or buckles.

This really just scratches the surface of the way patients with chronic conditions pay more for day-to-day living. Just something I hope more able-bodied people will consider as they try to understand what it’s like to be someone who will never again not be sick.

 

 

 

Fibromyalgia

Relieving Resting Pain Face with Meditation

resting-pain-faceYou’ve heard of resting bitch face, right? Well, I’m launching an awareness campaign for Resting Pain Face™ (RPF) because September is Pain Awareness Month.

One of the truly suck-ass things about having fibromyalgia and other chronic-pain-causing illnesses is that they increase your risk of unwittingly displaying pinched facial expressions. I catch myself doing this all the time.

I’ll lie down at night and realize that instead of letting my eyelids gently fall, I’m squinting with my eyes already forced shut — that’s like double squinting.

Or something.

Anyway, it’s bad because I’m giving myself headaches or exacerbating existing headaches on top of whatever pain I’m feeling in the rest of my body.

One of the most effective tools I have for combating RPF is meditation. But if you’ve ever tried meditating (even while healthy) you know it sounds a whole lot easier in theory than it is to actually practice.

A key concept of using meditation for pain management is leaning in or accepting or welcoming pain. I know. It sounds insane, but the idea is that when we fight or react to our chronic pain, we actually intensify the pain sensations. I 100% and wholeheartedly subscribe to this theory.

But let my give the pain-free folks out there a little analogy, lest someone start saying nonchalantly to The Pained “Have you tried meditating?”

Imagine that you’re experiencing pain because you burned your finger on the inside of a 450-degree oven door. The laws of meditation for pain relief state that in order to free your finger from the pain, you need to lean in, accept, or welcome the pain. It’s a bit like holding your finger to the oven door instead of pulling away. It’s next to impossible to do because it’s not fucking natural.

You see, the body instinctively winces, pinches, and fights to pull away from all kinds of pain. And when those reflexes become chronic because the pain is chronic, plenty of muscles tense and flex. And then the muscles just fucking stay that way because the pain is internal and there’s nothing to jerk away from, causing more pain and extreme fatigue. (Don’t believe me? Try flexing your bicep for two years without a break and let me know how things go for you. Next try flexing every muscle in your body for two years.)

I’m not trying to be Debbie Downer about the whole thing though. As I said, meditation is one of the most effective tools I can currently access for pain relief. If you’re a fellow sufferer, I recommend guided meditation. Someone gently whispering in your ear to exhale, relax your toes, or sink into your bed makes for a pleasant distraction that kind of tricks you into becoming more accepting of the primary source of your pain. The more you meditate, the better.

I recommend the Calm app, and nobody paid me to say so. You can also try Calm in your browser.

 

Fibromyalgia

Hold Your Head Up

I’m taking a break from work to browse Amazon for cervical collars. I really have no idea whether one of these would actually be helpful, but I feel like I need something to hold my head up for me. My musculoskeletal system is clearly not up to the challenge, and Dan assures me that no doctor would agree to put me in a halo brace.

Rather than re-write the horrors of this weekend, I’ll share a screenshot from a Facebook update to fill you in:

fibromyalgia-neck-shoudler-pain

Heading into the long weekend, I was optimistic that four consecutive days off would give me time to recharge. What a fucking disappointment reality turned out to be. Sunday night the pain was so bad I was in tears. That’s when I finally decided to take 20mg of nortriptyline.

Taking 20mg is totally OK, by the way. Dr Gastro™ prescribed 30mg for my IBS and help sleeping, but I usually just take 10mg because more makes me too sleepy to function the next day. However, if I’m suffering and don’t need to brain much the next day, I will let myself take 20mg.

As pain treatments go, it’s not ideal. I mean, it doesn’t relieve the pain so much as make me unaware of it. For 8 to 10 hours I’m drugged and oblivious. I can’t not sleep. That’s why I only take it at night before bed. Daytime pain relief is currently not available to me.

Anyhoo…

Fibromyalgia · Medical Cannabis

What If You Could Use Marijuana AND Keep Your Job?

wine-humorJust some venting. Don’t mind me.

One week from today will be my three-year anniversary as a technical writer with my employer. It’s significant because at three years my short-term disability insurance pays 100% of my salary if I need to be away from work for a while. Until that day, it only pays 60%.

I don’t think I’ll need to take advantage of that benefit (is it really a benefit if the premiums come out of my paycheck?) since I’m applying to get my medical cannabis card, but knowing I will have that safety net is a huge relief.

I’m lucky to have a job that allows remote work, but some days my symptoms are so bad I can’t pull a sentence together. All I can do is lie in bed and wait for normal brain function to return.

And let me tell you, when you’re that sick and you’re the sole source of income for the household, the last thing you need is a battle with anxiety over what happens if the fibro flare exceeds the number of sick days you have banked.

The second to last thing you need is a judgmental asshole telling you that what you’re really looking for isn’t a way to keep your job, but for the State of Illinois to enable your desire to be a lazy pothead.

 

Dear unnamed person who offers unsolicited advice,

Don’t you have a bad-day-in-the-carpool-line headache to treat with a bottle of red wine?

Love,
Me