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Archive for the ‘Chronic Pain’ Category


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#mmjinfo I want to tell you about my experiences with #medicalmarijuana in #MA and at a #ME dispensary. #spoonie #MultipleSclerosis

#mmjinfo You have to have a “qualifying condition” to be eligible for mmj. Leafly has links & info #mmjinfo

#mmjinfo @Leafly is a great resource, btw. Everything you could need to know about #medicalmarijuana on one site.

#mmjinfo I qualify for medical marijuana because I have #MultipleSclerosis & spasticity.

#mmjinfo My hospital does not allow its doctors to prescribe #medicalmarijuana. So for pain mgmt I go to a doctor that specializes in mmj.

#mmjinfo In MA doctors must have certain type & duration of training before being allowed to prescribe #medicalmarijuana

#mmjinfo You must also have a relationship with your prescribing doctor. They are a real part of your health team & renew your Rx annually.

#mmjinfo Speciality #medicalmarijuana doctors usually don’t accept ins. But you can submit a “super bill” to your ins as “out of network.”

#mmjinfo YMMV sending the bill to your insurance company. I don’t get reimbursed, but the $ amt is credited to annual out of pocket $ spent.

#mmjinfo #MA also charges you $50/year to get your #medicalmarijuana registration card. Signing up online is so easy & your doctor can help.

#mmjinfo My pain mgmt #medicalmarijuana doctor always forwards my records to my Neurologist. It was my choice, but it’s a thing they offer.

#mmjinfo In #MA I see a doctor at Their website also has a lot of information about #medicalmarijuana.

#mmjinfo Both my Neurologist and my Primary Care Physician are supportive of my taking #medicalmarijuana and are interested in the results.

#mmjinfo See? Legal, prescription medicine, overseen by multiple doctors. #medicalmarijuana is a real, helpful, legitimate thing.

#mmjinfo Here’s how you figure out your #medicalmarijuana dosage: Use your chosen strain until you get high. Then cut that amount in half.

#mmjinfo It’s important to check your dosage for different strains because they effect you differently. (Why is a big topic; more later.)

#mmjinfo For example, I use only one puff of a particular strain because two puffs gets me high. One puff. So this is sensitive. YMMV.

#mmjinfo I use a vaporizer to take my #medical marijuana. It’s personal preference. I don’t like to smoke. I also think it tastes better.

#mmjinfo Yes, tastes better. In my experience, smoking #medicalmarijuana tastes like burnt leaves, but vaping allows you to taste flavors.

#mmjinfo The United Patients Group has information on ways to consume #medicalmarijuana here

#mmjinfo Vaporizers vary in cost and quality so do your research. I’ve used both the Magic Flight Launch Box and the more expensive Pax.

#mmjinfo You’re also going to need a grinder for your #medicalmarijuana. I have hand & joint pain so I use a larger grinder with a handle.

#mmjinfo My grinder also has multiple levels and a “pollen catcher” to collect kief. (What is kief:

#mmjinfo Grinders about the size of a quarter are fine for grinding a small amount at a time & fit great with the Launch Box.

#mmjinfo This is all up to you. I grind in advance so I’m not cursing my painful hands and a grinder in the middle of the night.

#mmjinfo I like to grind some #medicalmarijuana in advance and store it in small, airtight glass jars like these

#mmjinfo Storage is important to keep your #medicalmarijuana fresh. Zipped baggies, airtight containers, whatever you like. I use both.

#mmjinfo Where to get your supplies? Your dispensary, your specialty doctor’s office, even amazon. It’s all out there and easy to find.

#mmjinfo Follow the manufacturer’s instructions for cleaning your vaporizer, pipe, whatever. You’ll need alcohol, pipe cleaners, q-tips.

#mmjinfo And do clean it often because the build-up tastes gross and it clogs the vape/pipe letting less vapor/smoke get to you.

#mmjinfo Earlier I linked you to different ways to consume #medicalmarijuana. Vaporizing is my personal preference, but I also like edibles.

#mmjinfo One of the differences in consumption methods is how long it takes for the #medicalmarijuana to affect you.

#mmjinfo Vaporizing works almost immediately, while edibles take some time to work (30-40 mins). Vaped effects wear off faster than edibles.

#mmjinfo For pain management purposes, vaporizing (smoking) deals with your pain right away, while edibles require you to plan ahead.

#mmjinfo By using #medicalmarijuana I was able to stop taking Vicodin, Baclofen, and Gabapentin. It deals with all the pain and spasticity.

#mmjinfo Getting rid of all those meds (some which upset my stomach, some which damage my liver, some which mess with my mood) was great.

#mmjinfo For me, #medicalmarijuana does all the things those drugs did, and does them faster, more effectively, with less side-effects. YMMV

#mmjinfo #MA has been slow in the legalization process. We’re just now getting dispensaries in our state. I’ve been going to Maine.

#mmjinfo To find a dispensary in your state, Google is your friend, as is Leafly, and your state’s Department of Public Health.

#mmjinfo In my experience with dispensaries, they are concerned about your privacy and are there to help educate you. So ask them questions!

#mmjinfo Okay, that’s about an hour’s worth of information. Enough for now. I’ll do this again sometime, and answer any questions I can.


Written by tldegray

November 30, 2015 at 9:30 am

MS, Fatigue, and Having Fun – Or, Readercon, Me, and A Lot of Naps

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three white stones balanced one atop each other, surrounded by two hands that are ready to catch the stones if they fall

It’s a delicate balancing act.
[Achieving Balance by James Jordan]

Readercon was this weekend. This was the second year I’ve been, and I love it more this year than I did last year. I got to do more this year than I did last year, too, and that made me happy.

For me–and for so many of you with chronic illnesses and/or disabilities–going to a con like this, or even going out to dinner with friends, is a delicate balancing act. I can’t just get up and go. I have to plan. I have to prepare. I have to realize that a two-hour or two-day event is going to cost me far more than that in time.

Readercon begins with Thursday evening programming and it runs through Sunday afternoon. Last year I went to only two or three panels before being overcome by pain and exhaustion and having to forget about the rest of the con. (Though, based on the timing, it’s likely I had active MS lesions during last year’s con, making it a far more difficult experience than it was this year.)

This year, I made extensive preparations for Readercon. I spent the first three days of the week resting. Stockpiling my spoons, if you will. It was boring. I wanted to go out and do things. But I knew if I did, I wouldn’t have nearly the energy I needed for the con. I scheduled a massage for Thursday afternoon. Massage is a great help to me; I go there in great pain and with fatigued muscles and leave there nearly pain-free and able to walk with ease. Then I spent the hours between the massage and the evening panels resting.

Friday morning I woke up and had to make one of those horrible adult decisions I hate to make. I could tell from how I felt that there was no way I would be able to attend the seven hours of panels I wanted to attend. I had to choose my favorites and acknowledge I might not even be able to attend all of them. It’s a horrid feeling. I want to go out and do things. I want to do ALL the things, as Allie Brosh would say. But my body won’t let me, so I have to be responsible and care for myself. It sucks.

So I took some meds, drank some water, and went back to sleep, all the while mourning the things I’d miss. It was the right choice. I had time to eat lunch, stretch, and otherwise be fully prepared for the afternoon panels. I stayed for almost four hours until my achey, yawning body let me know it was time to go home.

I didn’t make it to Readercon yesterday or today. That was it, my body was done. I can tell I’ll still be feeling the effects of it tomorrow, and possibly even further into the week. But because I was careful and took care of myself, I was able to attend some of the con and have a lot of fun. It was a successful balancing act. I’m glad I did it.

Written by tldegray

July 14, 2013 at 7:35 pm

waking into pain

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You’re in the place between sleeping and waking. Everything is peaceful. You’re drifting. You come closer and closer to consciousness. As you do, you feel a twinge. A stab here, an ache there. Your head, your hands. Your abdomen, your back. Your legs, your arms. It all starts to come back, all the pain that sleep, for once, let you forget.

Before you’re fully awake, you’re reaching for your pain meds and wishing that one day it would be better. But it never is.

Written by tldegray

March 21, 2013 at 7:23 pm

Health Resolutions for the New Year

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I think if I can accomplish these things then some of my other health goals will become attainable.

Change my DMD (disease-modifying drug). Almost everyone will tell you that the most important thing about your DMD is compliance. Will you take the drug as directed? Right now I take Copaxone, which is a daily, subcutaneous injection. I’m tired of it. I’m tired of the pain, of the time it takes, of the entire process. And I’m concerned because I’ve already had one episode of breakthrough disease.

There are currently nine DMDs available for MS. I’m dismissing anything that requires an injection. If I were okay with injections I’d be sticking with the Copaxone. I’m also dismissing the IV infusion DMDs because I don’t have good enough veins to keep that up for the long-term. That leaves me with the oral medications: Gilenya and Aubagio.  I don’t know yet which one I’ll choose, though I lean toward Gilenya. I’ll need to do research and consult with my Neurologist.

Better Manage my Symptoms. Chief among this goal is to get a prescription for medical marijuana. I’ve already eliminated diclofenac sodium from my daily regimen because it causes damage to the GI system. Right now I’m taking gabapentin twice daily for MS pain and while it works, it works only to a degree, and it also causes extreme fatigue and brain fog, neither of which I care for. I already know that marijuana aids with this sort of pain without the gabapentin side-effects. I also take baclofen for the MS Hug. In order for the baclofen to work at all you have to take it immediately, almost before you realize you’re having an MS Hug, or you have to take at least double the dose. (Which I don’t do, so I end up taking one dose, waiting the eight hours until I can take the next, then taking a second dose–all that before I get even the slightest pain relief.)

This is a common complaint among people with MS. Our medication works, sort of, but not completely, never entirely. We are never free from pain. I’d like to find something–and I believe that something is medical marijuana–that helps me. This is going to be a battle, I can tell. My Neurologist will not prescribe it. Will my PCP? I qualify under the law so I hope at least one of my doctors will respect that and assist me in taking control of my own health.

Find my Migraine Trigger(s). This should be as easy as noting down whatever I’m doing when a migraine strikes. If anyone uses a tracker–specifically an Android app–let me know. I need something quick and easy that I can do while in pain. One of the main reasons I want to do this is because I don’t like the medication I take for migraines. Because of my other health issues I can’t take standard migraine medications, so I take vicodin for the pain. It works, but it also knocks me out, and that’s not something I care for. I suspect the medical marijuana will help with this, too.

Written by tldegray

December 28, 2012 at 3:14 pm

MS & My Cane

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Getting my cane was the best thing I did for myself this year. Without it I can’t walk more than 200 yards without stopping to sit and rest; with it I can walk 500 yards before resting, and if I’m slow and careful, and if it’s a very good day, I can go farther. It helps me when I wobble, it keeps me from falling down. My cane gave me back something I thought was lost to me and I love it.

The public reaction to my cane has been strange and not at all what I expected. I thought using a cane would make my disability visible–after all, it’s right there! I didn’t expect much of a change in attitude, but I thought at least people would notice the cane’s existence and maybe stop scowling at me for using handicapped parking. (I am ever the optimist.)

Instead, to the majority of people, it’s as if the cane is as invisible as my illness. It’s almost as if by using it I’ve become invisible! People crowd close to me when I walk, and often walk into me. From behind me, they step on the cane. From the side, they knock it out from under me. I’ve had more near-miss falls with the cane in a crowd than I ever had without it.

Other people see the cane and back away from me in a rush. They get as far away from me as fast as they can, dodging and ducking their heads to avoid making eye contact with me. For them, my cane has transformed me into something highly visible and very frightening. I’d promise them that cane usage isn’t contagious but they’re far away before I have a chance to even smile in their direction.

At a public event a few months ago I encountered one person who recognized me–and my cane. We came face to face in a small doorway with only enough room for one of us to pass. He looked at me, smiled, backed up and waved me through, leaving enough room for me to swing my cane by my side. We wished each other a nice afternoon and both went on with our days. I hate to have to admit that such an average encounter made me so happy, but it did, because this man was the only one that day who treated me as a person, albeit a person with a cane.

Remember that. We may have canes or crutches or wheelchairs but we’re still people like you.

September 10-16, 2012 I’m blogging for Invisible Illness Awareness Week.

When it comes to pain, I don’t know how to answer.

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“Where does it hurt?” chronicillnesscat” I don’t understand the question.”

The question I can’t answer is “what’s your pain level?”


You want the pain level for my PHN? My legs? That nagging thing in my shoulder? How about my jaw? Or should I just average it out over my whole body?

It’d be easier if the nurse just handed me a diagram of my body and some crayons so I could color-code and maybe draw some lightning bolts and frowny faces over the spots where it really hurts.

Written by tldegray

December 8, 2011 at 4:22 am

Posted in Chronic Pain, Health

Tagged with ,