Monthly Archives: August 2016

“I Have No One” Responding to the Cries of the Sick – Chronically Whole

An awesome article by blogger Stacey Philpot about reaching the importance of that person(s) who treat you like a person and reaching out to those that need a cheering section.

I sat with legs crisscrossed applesauce, eating a bowl of honeycombs with a shameful ferocity before preschool pick-up would end these heavenly moments of silence. Skimming the cable guide’s offerings, I settled on the noonday news. Instantly, an invisible hand was reaching from the television, thrusting open my chest and extracting my heart with skillful precision. Instead of a red

Source: “I Have No One” Responding to the Cries of the Sick – Chronically Whole

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Filed under family, friendship, reblog

RX Incandescent Light Bulb

 

“Warning: This halogen lamp may cause migraines from Hell that hurt more then the ones that florescent lights may cause because we mimic the infernal midday sun.”

The store in town, and the Walmart and Target nearest you did not have my blessed incandescent 30-ish watt bulbs (or 15). The lowest was 60 watts, I cannot handle that many lumens all day. We found out that some stores have decided to stop caring them because of this new energy saving incandescent bulb. Halogen lamps. The store’s lowest watt was 45 in the halogen. However the lumens are lower per a watt, so we thought okay. (Halogen 310 lumens vs normal 450 lumens for a 45). NO, not okay. I have not been well at all. So looked up how halogen lamps work. It emits blue rays. The kind that the sun gives off, so its a brighter and clearer light. It is a migraine’s playing ground.

The midday sun the promotional information says. I think its been 11 years since I appreciated the sunshine, least of all the midday sun.

It was like we kicked out a tiger and invited a platypus to live with us.

I read that in the UK you have to have a prescription to have the regular incandescent light bulbs. I think that the pharmaceutical companies are getting to much power and soon we will be giving them even more. We will be wasting doctors time and waiting in line at the drug store to buy light bulbs from the pharmacy. And we will be paying 50$ a bulb. For a bulb that right now we can buy in four packs for less then 5$. This is ridiculous.

Next time I see them I think we will buy all of them on the shelf that I can afford.

 

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Filed under migraine/headache, pain, Pain managment, tolerance, Treatments

Online Support Group

 

Facebook advertises My Chronic Pain Team: The social network for those living with chronic pain. I read mostly good reviews, the worst being “this is like Facebook for sick people.” So in the spirit of trying new things, curiosity, and fear of my sister I joined.

My username is “SuperGirl” Look me up if you are a member or decide to try it out.

That’s www.mychronicpainteam.com

Although the interactions are set up like Facebook or MySpace I think comparing it to Facebook is a unfair. MyChronicPainTeam connects people who are in pain with other people who are in pain and have similar conditions or symptoms and/or live in the same region. It is an online support group. Facebook is a place for people who personally know each other or are acquainted to stay connected, piss each other off, share news, pictures, memes, and articles. MyChronicPainTeam is not that. I also have not found any links to other sites, products, fundraisers, or research. It is only people talking about what they are going through. It is a safe and supportive atmosphere. A lot of posts consists of a variation of “I hurt” “I’m sad/pissed” “I’m actually having a good day and did stuff” and other people responding with “I hope it gets tolerable soon” or “Celebrate good times Come on!” In the Q&As that I have read I think most people think “there is no such thing as a stupid question” and “there are no irrelevant questions.” They are taken seriously and answered thoughtfully.

So far my favorite part is how statuses and comments are set up. Before you can update a post you answer the question “How was your day” Good, Bad, or so/so. Good is pre-checked, how very optimistic. Before you start typing it says “Don’t forget the Golden Rule.” On both you can add a picture. To these you can either “like” or “hug.” I have gotten 7 cyber hugs.

Setting up your Team:

When you set up your profile you answer a few questions, tell about your pain journey, and yourself. Then add a profile picture and set up e-mail notifications. But you can skip it.

After that you are ready to start your team. There are a few ways.

“Meet others” tab. There are 9040 others. To find people like you there is 6 filter options. You can say Hi or add them to your team from that page. Take their initial suggestions or from what you filter.

“Q+A” is a forum. Someone posts a question and members comment or answers. I like this section because I find it easier to find people who I might have more in common with. This is actually where I found my first Team person.

“Activities” is a place to look as well. You can look at all recent posts, your teams posts, search a keyword, or by category. Read and find people who read like you mesh well.

This might be easier if I was more outgoing.

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Vacation onThe Time Zone Line

“What time is it?” is not a simple question in Winamac Indian. My phone didn’t know what time it was. The time zone splits my Aunt’s farm in half. The main house sits on “fast time” (Eastern) and the guest house sits on “slow time” (Central).  I stayed in the guest house. My alarm for my medicine goes off and I take it. We goof off for about an hour and decide to move to the guest house. My medicine alarm goes off.

The Peanut Gallery: Isn’t that your medicine alarm…did you take it…why did it go off again…did it actually go off earlier..should ya take it..lets count…I’m going to shower now…how much did you bring I don’t want to count a lot…is your alarm going to confuse us everyday… ug…lets just go to sleep…no its going to confuse us twice a day…ug why wasn’t anyone paying attention…has anyone asked her yet…where is she…we should make a plan…MOM!
Mom: My name is no longer Mom.
Sis: Oh Royal One, what should we do about Crystal’s medicine?
Mom: She should take it when she usually takes it 10 am and 10 pm
Me: Oh Royal One, is the usual time fast time or slow time?
Mom: You figure it out.
Sis not taking a shower: Do you remember if Crystal took her medicine when the alarm went off at fast time?
Mom: I wasn’t there. You didn’t bring your pill box? Go count. The Royal One is going to sleep.

My phone was very confused. By the end of the trip it asked me to manually set the time. The lesson learned is sometimes a watch is much preferable to a device that changes with the times. And take your pill calendar.

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Filed under family, migraine/headache, Treatments

Letter to My Migraine — The Daily Migraine

You don’t own me.

Source: Letter to My Migraine — The Daily Migraine by Lisa Jacobson

 

This is a lovely poem about the struggle that migrainers go through on a regular or semi-regular basis. You should check it out.

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Somnilight: Important stuff from the FB comments. (Revised)

It was brought to my attention I goofed. I apologize. I see tons of ads for TheraSpecs, I didn’t realize I was reading about a different brand.

I found something new I want to try! I read the Facebook comments so you don’t have to.

Somnilight are glasses that block out light that causes headache and migraines, much like sunglasses. It helps with computer screens, pesky sun light, and florescent lights. They help battle the minions that would destroy photosensitive warriors with photophobia.  Also sounds like a way to stretch our allotted spoons for the day. For more detail watch the video.

For more detail, here is Somnilight’s research and links to more research about the glasses: http://www.somnilight.com/photophobia-and-migraine-glasses.html

The glasses come in amber, red, and outdoor. On the website I’m only seeing “outdoor” and “indoor” option, indoor being red. You can find amber on amazon. Both block 90% blue light which is what usually triggers the migraine. Red blocks a wider range of light and is considered darker-by some it is a little to dark for computer work. Red is not good for driving because it blocks green light. The Somnilight people recommend that you wear amber on a daily basis if you have photophobia  or intractable migraines and then red on migraine days.

There are two brands. The other is TheraSpecs. Theraspecs will add your prescription.  They also have an option to send in your own frames.

Somni Priceing: Red 49.99$ Amber 39.99$. Bundle 69.99$

TheraSpecs Pricing: Send in your own frames 70$. Indoor black 99$. Outdoor 129$.  The cheapest combo is 198$.

Both also come in the kind that slip over you glasses for the same price.

Somni has a Coupon code in the feed: CLEARANCE for 50%

Ships within 4 days for many people. If you are unhappy, there is a 60 day risk free trail period. Send them back and they will give you a refund. However you are responsible for the shipping for the return, about 3$.

Any questions? Post it to the Facebook feed. The person managing it replies with useful information and quickly (mostly the same day).
https://www.facebook.com/Somnilight/videos/210881139287204/ 

There was one who commented that the glasses were recommended by his neurologist. The majority of commentators that used/tried the glasses filled the feed with about how the glasses made living with a monster under their neurons easier. Most of the feed was individuals saying they just ordered, have plans to order, wondering if they should try it, or giving reasons why they thought it wouldn’t work for them. I only remember one saying she returned them but that was because they were to small, she regretted giving them up, being me I thought why not take them to your local Walmart and get them adjusted or when I got my refund send in my own frames and purchase it again?

I am going to be asking my neurologist about these at my next Botox.

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Filed under migraine/headache, pain, Pain managment, Spoon Theory