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Archive for the ‘Multiple Sclerosis’ 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

Health Resolutions for the New Year

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Work with my PCP and Clinical Pharmacologist to better control my blood pressure. This includes trying various new medications, having as many appointments as they deem appropriate, and checking and recording my blood pressure at home.

Better track my health issues. Use the apps I have. Tracking can lead to finding triggers and that can lead to better overall control of my disease.

Get a medical marijuana prescription. Confirm my hospital’s policy, then find a pain management doctor if necessary. Register with the state as needed.

Commit to taking a multi-vitamin daily. This is the one supplement I always forget and I need to be better about it.

In 2013 I accomplished the majority of my health resolutions. I did change my DMD from Copaxone to Tecfidera and I haven’t had an exacerbation (with new disease activity) since. I increased my gabapentin dosage and had a remarkable upswing in my walking ability because it much better controlled the pain and muscle fatigue. As for my migraine triggers, they seem to frequently come along with other MS pain, so I still need to track them further to figure this out. I did not obtain medical marijuana last year as the state was not yet set up to provide it, but I did join an organization supporting patients so that I could learn about the process.

Written by tldegray

January 3, 2014 at 7:00 am

I’ve got the Uhthoff’s Phenomenon Blues

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Ice berg melting by Derek Keats on Flickr

Just set me adrift on this iceberg. Please!

It’s supposed to reach 100 degrees Fahrenheit today and since that’s changed all my plans for the day I suppose now is a very good time to tell you about a big part of my invisible illness: Uhthoff’s Phenomenon.

Basically, Uhthoff’s Phenomenon (or Sign) is a worsening of Multiple Sclerosis symptoms caused by heat. It happens because the heat makes it even harder for your already-damaged nerves to function. Something as common-place as a hot bath or shower is enough to trigger symptoms. (Which is why, for years, the “hot bath test” was used to diagnose MS.)

You might be thinking of it as “heat intolerance” but that doesn’t describe the scope of it. I’m not intolerant of heat, I’m knocked on my ass by heat because all of a sudden my nerves no longer transmit the right messages or want to work properly. (Knocked on my ass was a literal statement; I can fall down if the heat is too extreme and I’m unable to cool off quickly enough.)

Here’s the scary part: an increase of 1/4 to 1/2 of a degree Fahrenheit is enough to trigger symptoms. Now try to imagine what an increase of, say, 30 degrees above my optimal will do to me. Yep, that’s why I’ve changed all of my plans for the day to “stay inside an air-conditioned space.”

So what actually happens to me in the heat? The symptoms come on almost immediately; it takes only minutes for me to start to feel the effects. Then I feel drowsy and my legs begin to feel weak. If I’m walking, I start to wobble. I tremble and shake. I slur and forget words, and have trouble with my memory. I feel as if I’m going to pass out. Sometimes I fall or nearly fall down.

The good thing is, under normal circumstances the symptoms can be rapidly reversed by cooling down. By under normal circumstances I mean, being able to cool down immediately. The longer you’re exposed to the heat, the longer it will take to feel better once you begin cooling down.

So if you need me today, I’ll be inside where it’s air-conditioned.

Written by tldegray

September 11, 2013 at 7:31 am

30 Things About My Invisible Illness You May Not Know

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iiweekadget-dontmissit11. The illnesses I live with are: Multiple Sclerosis, Depression, General Anxiety Disorder, Diabetes, ME/CFS, Asthma

2. I was diagnosed with it in the year: It ranges from asthma in 1987 to MS in 2011.

3. But I had symptoms since: With MS, I had symptoms since I had the shingles in 2008.

4. The biggest adjustment I’ve had to make is: Not being able to work or go to school.

5. Most people assume: I’m better or worse than I actually am.

6. The hardest part about mornings are: Waking up into a bad pain or disability day and realizing any plans I had must now be scrapped.

7. My favorite medical TV show is: I guess it’s Royal Pains, but I don’t like it because it’s a medical show. (Once they did a spinal tap on someone’s living room floor! OMG, NO!)

8. A gadget I couldn’t live without is: My smartphone. It stores my med list, my appointments, alarms, brings information to me, and brings me to the world when I otherwise can’t get up and out.

9. The hardest part about nights are: Being woken up by pain and being unable to return to sleep.

10. Each day I take 17 (did I count that right?) pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: consider them, try them, and think of them as something that works hand in hand with my conventional treatments. Massage, especially, works wonders for me.

12. If I had to choose between an invisible illness or visible I would choose: I wouldn’t everm make this choice because I think everyone’s particular illness is the worst one for them.

13. Regarding working and career: I miss it. I miss it sorely. It’s a tough thing to talk about so I rarely do.

14. People would be surprised to know: I’m not sure. I’m an open book about my illnesses.

15. The hardest thing to accept about my new reality has been: Not being able to do what I want when I want.

16. Something I never thought I could do with my illness that I did was: I don’t think that way. I tend to assume I can do anything and then find out after trying.

17. The commercials about my illness: Are pretty much fine. I can’t say I’m swayed by them one way or another.

18. Something I really miss doing since I was diagnosed is: Being able to make plans and keep them without illness interrupting.

19. It was really hard to have to give up: School.

20. A new hobby I have taken up since my diagnosis is: No new hobbies, just more of existing hobbies.

21. If I could have one day of feeling normal again I would: I feel normal now. But if I could have one day pain-free and able to move like I used to I would go outside and run and run and run.

22. My illness has taught me: Patience. Patience with others and patience with myself.

23. Want to know a secret? One thing people say that gets under my skin is: I’m really touchy about people scowling and commenting when I use my handicapped parking placard. I have it for a reason, it is mine, and I do need it. You haven’t seen my MRI films so you have no way of knowing about my illness. Also? Hi, do you see my cane?!

24. But I love it when people: Extend invitations to me that acknowledge I may not be able to keep plans I make. Things like “when you’re feeling good” and “spur of the moment” are wonderful things to hear. They show me the person understands.

25. My favorite motto, scripture, quote that gets me through tough times is: I really don’t have one. When times are tough I turn to family and friends.

26. When someone is diagnosed I’d like to tell them: You are not alone. Seek out information on your condition. Find a good neurologist with a good nurse.

27. Something that has surprised me about living with an illness is: My personal resilience. I had no idea I could withstand so much.

28. The nicest thing someone did for me when I wasn’t feeling well was: The Husband often does nice things when I’m unwell.

29. I’m involved with Invisible Illness Week because: I think it’s important to spread this knowledge.

30. The fact that you read this list makes me feel: as if you want to understand me.

Written by tldegray

September 9, 2013 at 7:00 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

My MS Motto

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Today is National MS Day and the NMSS wants to know my motto for making it through another day of MS.

“Fuck it.”

Yep. That’s my motto. Short and sweet. To the point. Fuck it. Witness:

Can’t spend time outside in the Summer without getting ill from heat? Fuck it; move the party inside where the air-conditioning is.

Take twenty pills a day and can’t bear to take one more? Fuck it; buy gummy vitamins for adults and take them.

Have to cancel plans because of your MS? Fuck it; get up tomorrow and try again.

Fuck it reminds me that I always get a reset. It reminds me not to dwell on the things I can’t control and to make the very best of everything I have. Fuck it makes me laugh.

So next time your MS has you down, just remember: Fuck it.

Written by tldegray

May 29, 2013 at 12:54 pm

Do you downplay your chronic illness?

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I wondered recently if I downplay my illness. A friend said she thinks it’s easy to downplay chronic illness because “stating it how it is can just sound ridiculously dramatic.” She’s so right!

This isn’t an issue of trying to avoid the stigma of chronic illness and disability–though it easily could be. It’s an issue of feeling as if I couldn’t possibly be believed if I told people just how bad it is.

What would you say if I told you that during this particular MS exacerbation my cognitive issues are so bad they remind me of my grandmother and great-grandmother when they had Alzheimer’s? What if I told you that I can walk less than 100 feet and that I have to use a cane and lean on a wall to do even that? That often my hands shake so much I can’t write or type? And if I told you I spent all of yesterday in bed, physically exhausted, just from going to the doctor the day before? Does that sound real to you or does that sound like someone exaggerating?

Here’s a reason why I might downplay all of this: I tell people I have multiple sclerosis and they don’t realize what it means. They think I’m sick, like you’re sick, that I’m sick now and will be well soon. They don’t understand there is no well soon. They don’t understand this is permanent.

Usually I look for the happy medium. Should I explain more? Better? Is there a way to be understood? In my experience, no, there isn’t. The people who want to understand will listen and read. The people who don’t will forget they’ve even been told. That’s all there is to it. So I’m learning to be grateful for those who take the time and to not let the others bother me.

Written by tldegray

February 6, 2013 at 4:49 pm