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Archive for the ‘Health’ 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

Survey to Take: Attitude Toward Disabilities

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I just finished this survey: Attitude Toward Disabilities

Hi Everyone,

I’m a student and researcher at Rochester Institute of Technology, and I’m researching current attitudes about people with disabilities as well as how disability language may affect these attitudes. This will be the capstone for my bachelor’s degree and I need as many people to take the study as possible. It’s a online survey, and it will take you 30 minutes or less. It has easy questions about attitudes, self-esteem, and demographics, and if you take the survey, you can enter to win a gift card.

Thanks so much for your time!

Go take the survey. It was very interesting.

Written by tldegray

July 11, 2013 at 5:17 am

Posted in Disability, Health

Spoonie Games

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Eat your heart out, Dr. House.

Over the last few days I’ve been playing one of my least favorite spoonie games. I call it “Something’s wrong; what is it?” The goal of this game is to figure out what, exactly, is wrong. And you win by finding something that will treat the symptoms. It is not an excellent game, but it can be played by the whole family.

The first thing you do is walk around saying things like “I don’t feel well,” and “what the hell is going on with me?” This lets the other players know that you’re ready to play. It’s the equivalent of getting out the dice and game board.

Then you begin by listing your symptoms. Be as vague as possible because right now they’re as vague as possible. Shout them out in random order. Wonder if there’s any connection between any of them and sigh in defeat when you can’t find anything. Make a list, you’re probably going to need it.

Now it’s time for the bonus round, or, as you all know and love it, “Dr. Google!” This round is optional but it does add fun to the game and gives your non-spoonie friends a way to feel super-involved. When you’ve considered and dismissed the idea that you have Miniature Giant Space Herpes, as Dr. Google suggests, return to your list and try to make connections among the many illnesses you do have. Make sure to consider all your triggers for all your illnesses. Consider this may not be one thing wrong but many. Maybe buy a second whiteboard; you probably need it.

Here’s where you can play the home game. I’m going to give you my list and you can try to beat my score of winning the game after two days. Have fun!

I have Multiple Sclerosis, a possible secondary auto-immune disorder, anxiety, depression, sinusitis, I’m recovering from a cold, I get migraines, I over-exerted myself last week, I have sleep apnea, it’s in the high 90s this week. My fatigue has been off the charts. I have a low grade headache in the front of my head and sharp pains in my neck. I’m woozy, light-headed, and yesterday while outside felt as if I was going to pass out. I’m more clumsy than usual and my legs feel weak and achey. I’m very irritable. I’m misplacing words more than usual and my recall is slower than normal. I have low-grade nausea and my appetite is erratic. Something’s wrong; what is it?

(Answer in the comments.)

Written by tldegray

June 24, 2013 at 8:48 am

Posted in Chronic Illness, Health