MMJ for Tucson: A Medical Marijuana Resource Event

Are you taking medical marijuana for pain management? Do you have questions for dispensaries, advocacy groups, and certification clinics? Stop by the Whistle Stop Depot (127 W 5th St, Tucson, Arizona 85705) tomorrow, Saturday August 30th from 6-9 pm to speak with dispensaries, advocacy groups, and certification clinics. This event is free and open to the public.

mmj for tucson

Cannabis 101: Saturday, August 2nd at 1pm

Are you curious about medical marijuana? Want to know how it can actually turn off pain receptors? Concerned about legal issues? Not sure how you would even begin to approach your doctor about this issue? This meeting is open to anyone who would like to attend- if you’d like to bring a friend, please feel free to do so. We would appreciate it if you could let us know in advance, so we can make sure there are enough chairs for everyone!

Join us at Kathy’s house (please RSVP via email -vbjess@gmail.com or info@azfibro.com – or by phone -520-979-6097 -for directions and address) for another installment of Cannabis 101. Kathy lives in the Foothills near Campbell and Skyline.

We’ll also be celebrating Judi West’s birthday, as her birthday is 8/1. We’ll have a cake to celebrate everyone’s birthdays.

As usual, there will be NO cannabis present at this presentation.

We will have our cardholder’s support meeting at 2:30pm. If you would like to stay for this meeting, please be sure to bring your AZDHS-issued Medical Marijuana card (MUST BE CURRENT!). If you have medicine that you want to exchange with other patients, this is the time to do so. We typically discuss specific dosing and preparation methods, dispensary reviews, strain reviews, legal issues, etc.

**If you do join us for both meetings, please notify Jessie or Kathy if you have cannabis with you when you arrive, so that we can secure it during the Cannabis 101 presentation. We do NOT provide cannabis to anyone who should not have it.**

Coping With Emotional Pain

wekosh-image-quote-be-kind-for-everyone-you-meet-is-fighting-a-hard-battle

“Be kind to people and don’t judge, for you do not know what demons they carry and what battles they are fighting.” 
― Vashti Quiroz-Vega

 

I’ve had some pretty high pain levels over the last week. I do not share this because I am seeking pity, sympathy, or empathy. It is what it is. I am fortunate to have a supportive, loving spouse and supportive, loving friends, many of whom fight the same daily battles that I fight. I am fortunate to have developed coping skills over the last 11 years to help get me through rough days and weeks. Weeks like last week, when getting the kitchen clean was a major accomplishment. Weeks like last week, when it felt that no matter what I did, I could not escape the pain. Weeks like last week, when I knew my ‘to do’ list was exceptionally long, and yet, it felt as if I just could not make a significant dent in it, no matter how hard I tried. This morning, I awoke to a filthy dirty kitchen, and had to wonder to myself, ‘How did THAT happen? This kitchen was spotless two days ago!” Pain, my friends, is what happened. Pain is very tiring.

But the worst of it for me, by far, are the emotional consequences of living in pain. Physical pain is hard, but emotional pain is harder. There is no pill you can take to escape emotional pain. For example: having to tell a friend, “I’m sorry, but I just can’t make it to dinner,” when I was the one who scheduled dinner in the first place. Cancelling on my trainer because I don’t feel well enough to drive

Thanks for the suggestion, but I really don't think Rice-a-Roni is the answer I'm looking for!

Thanks for the suggestion, but I really don’t think Rice-a-Roni is the answer I’m looking for!

into town by myself to exercise, even though I know the exercise will help me (oh, the irony!), simply because I feel that my mind is not sharp enough to concentrate on driving safely. Wondering how my body will cope when my husband and I have kids. Wondering if I will ever gain enough control over this pain to teach full-time again without calling out sick once a week. Dealing with thoughtless and careless comments, like “If you just did _____, you’d feel SO much better!” And, “Oh, if you’re still eating Rice a Roni, you’ll never get any better!” (Yes, someone actually said that to me last week.) Or, my personal favorite, the condescending looks that I feel I am receiving when my gait is unsteady because of a muscle spasm in my knee or hip while walking, and a disparaging comment from someone else that follows the spasm.

At times, I feel like saying, “Oh, really? Is THAT the magical cure that I’ve been missing for all these years? And to think, none of my doctors have ever thought to mention that to me! I’ll have to pass that along to my medical team, so tell me, which study and publication gave you that information? I’d love to look up the original research on PubMed.” I know that this semi-sarcastic response is really not going to help anyone, but I can’t help but think how great it would feel in that moment. Pop-culture does not equal medicine.

These comments hurt because I did not choose this life. Because I never prayed to God for a life filled with internal conflict with myself, external conflict with the world, physical pain, emotional isolation, and feeling as if others are looking down on me for ‘not working hard enough.’ If you truly believe this is a path that any person would choose, you must have some serious emotional baggage of your own. I cannot come to any other conclusions than that. Nobody chooses this life. It simply happens. And it can happen to ANYONE.

I was 18 years old, and the healthiest I’d ever been when I got sick. In a matter of three weeks, I went from doing 160lb leg presses regularly (I weighed 130lbs at the time), and running a 5K every week to having to sit and rest during a 1/4 mile walk on a gentle incline from my dorm room to the dining hall. Why did I have to sit and rest? Because I was so winded that I felt as if I was going to pass out, right there on the sidewalk. That kind of deterioration does not just happen to healthy people. Later, we discovered, my blood pressure was plummeting (sometimes to as low as 80/40, while my heart rate was at a high 130), sometimes after only mild exertion. Medications that “should help,” (my doctor’s words) granted me the gift of 50+ extra pounds to carry around, which only made the pain worse. This completely off-set any benefits I had been receiving from those medications. I’ve managed to lose some of that weight, but some of it just does not seem to want to go anywhere, no matter what I try. I have not given up on trying to drop this extra weight, but I have accepted it for what it is. My story, sadly, is not unique.

I know that when I am in pain, thoughtless comments affect me more. It feels as though the coping mechanisms I have worked so hard to build up over these last 11 years are suddenly not available when I am in pain, while I am still expected to meet functional and social obligations during these periods. The reason for this might be explained by a study performed at Harvard in 2012 using fMRI scans showed that Fibromyalgia patients express fewer neural connections within the brain to the amygdala, hippocampus, and the brain stems during pain episodes as compared to healthy controls.

Patients with FM displayed less connectivity within the brain’s pain inhibitory network during calibrated pressure pain, compared to healthy controls. The present study provides brain-imaging evidence on how brain regions involved in homeostatic control of pain are less connected in FM patients. It is possible that the dysfunction of the descending pain modulatory network plays an important role in maintenance of FM pain and our results may translate into clinical implications by using the functional connectivity of the pain modulatory network as an objective measure of pain dysregulation.

In other words, pain signals can actually block normal homeostasis in Fibromyalgia patients. It’s little wonder that pain also makes us forget all of the coping skills we’ve worked hard to master, even if it is only temporary. It’s little wonder that we try to “make up” for less productive days when we feel better, which sometimes sends us into a rebound flare. And, it’s little wonder that some of us have more digestive problems when our pain levels are higher, whether that is the result of taking more pain medications (which tend to cause constipation), or just a result of the pain pathways affecting homeostasis (digestion). This may also explain why Fibromyalgia patients are more irritable during high pain episodes, and why we have a harder time coping with stress in general; both are processed in part by the amygdala.

smileMost Fibromyalgia patients are experts in hiding their pain. It is a social taboo to talk about it extensively. Many pain patients are concerned about losing their jobs, housing, and sometimes even insurance or doctors if they talk about their pain or how it affects their lives too much. Or if they ask for “too many” work accommodations (for some people, this means even asking for ONE accommodation), even if the accommodations are truly necessary. Eventually, we all hit a point when we cannot hide it anymore. That may only last a day, a week, or a month- or it may be a permanent change. I think this homeostatic dysfunction plays a role in this phenomenon. When you are struggling to regulate your digestive tract, or to not think about how you’d really love to amputate your right arm because it hurts so G-damn fucking much at that moment, filtering your thoughts during a conversation sometimes just does not feel as important as it once did.

Many patients do not talk about their pain because of the kinds of insensitive comments I experienced this week. It is difficult to talk about pain. The problem is that when we do not talk about our pain, it’s easier for society to pretend that it’s not there. It’s easier for us to pretend it’s not there. We become even more isolated. When we don’t talk about these tough issues, we don’t see legislative changes like the Americans with Disabilities Act and Affordable Care Act, which help prevent disability-related discrimination. We don’t see the development of new research (like the study above), that may eventually help to develop more effective treatments.

While it helps to know what’s going on in my body during these high pain weeks, careless comments still sting. I think that they probably always will. This is where the benefits of a support group can help; we have all heard these careless comments, and we have all heard them when we’re in a lot of pain. Sharing the insensitive comment with a support group can be cathartic. Just hearing from other pain patients that the comment truly was insensitive and offensive, helps. Knowing that you’re not the only person fighting these internal and external battles, helps. None of us are truly alone.

Original image from: http://scn.youngeasy.com/list/hiding%20pain/1.html

Original image from: http://scn.youngeasy.com/list/hiding%20pain/1.html

If you are having trouble coping with a pain disorder, find a support group. Reach out. Talk to other patients. Find someone in your life who will simply listen to you vent- and maybe even give you a hug when you’re done. Talk to your doctor about the way you are feeling; it’s possible that a few weeks or months of talk therapy might help you develop more coping skills and it might even help you to come to terms with your illness. When your burden becomes too heavy, let someone else help you carry it for a while. You are not alone, and you are NOT your illness.

 

Share and Support: Saturday, July 12th at 1pm

Join us for our patients-only “Share and Support” meeting, Saturday, July 12th at 1pm. We’ll be at BJ’s on Broadway and Craycroft (5510 E Broadway Blvd). We are normally seated in the “sunroom,” to the left of the hostess stand.

**Please note that this is NOT the first Saturday of the month (our “normal” schedule) because many people may be out of town or exhausted from 4th of July festivities.**

We DO have a reservation, so please ask the host(ess) if you need help finding our table. BJ’s offers entrees for around $10-$20 for anyone who needs to eat lunch, and they do have gluten-free options.

Questions? Comments? Contact Jess at info@azfibro.com, or 979-6097 (cell). We hope to see you there!

Traveling with Fibromyalgia

travelTravel can be difficult, if not outright impossible, for anyone with fibromyalgia. I personally prefer to drive, because that way I don’t have to deal with TSA. Below are the special routines I’ve developed for myself to make that process a littler smoother and less chaotic for me. I also have specific routines that help make a road trip more feasible without putting my body through too much strain.

Driving:

Stopping every 1.5-2 hours on a road trip to stretch and massage my legs and shoulders helps to keep adhesions (knots) at bay. I also tweak my “normal” med dosages (amount AND timing) to accommodate higher pain levels during travel.

HG17779_QA_man-sleepless-triggers-fibromyalgia_FS

“Cheap motel? What was I thinking?!”

Avoiding certain foods (very spicy, or anything that has a remote chance of causing gas, for obvious reasons) and including more fruits and vegetables a few days before travel helps make travel easier on my body. I also try to clear as much of my schedule as possible a few days before so I’m a little more well-rested for the trip.

If I know we’ll be staying at a hotel that might not have a great bed/pillow arrangement, I bring a pillow, and sometimes a spare blanket, too!

During a trip, I sometimes have to schedule in some down time so I can actually enjoy the trip. My fiance and I have started to get really good at building in a balance of activity + restful activities during our trips, which also helps to reduce MY stress with it all!

 

1389285067000-GTY-TSA-SCREENSFlying:

-My Rx meds and daily supplements go in one gallon-size ziploc bag. If I have a med planner to take with me, I seal that in another ziploc, roll it up, and stick it in the bottom/side of the first gallon ziploc bag so it doesn’t fly open (this way, even if the med planner DOES open up, the pills aren’t going very far). Nothing worse than playing “medication roulette” in an airport bathroom!

- Any OTC products, like Biofreeze, ibuprofen, knee brace, etc., go in a second gallon ziploc. Both of these bags will need to come out for x-ray/hand inspection (you just have to ask TSA for a hand-inspection of your stuff if you don’t want it going through x-ray). Keeping the OTC stuff used “as needed” separate makes it easier to find if I’m in the middle of an airport and start having muscle spasms in my ribcage or something. Medical items are NOT limited to the 3.5 oz rule that toiletries are limited to. So, take that 6oz bottle of Biofreeze with confidence! Just make sure it’s clear somehow that it’s a medical item. In my case, I bag the non-prescription stuff up in the same way I bag the Rx stuff. So far, I’ve not had any problems with that.

- Pack any toiletries I probably won’t need during the flight (like a razor) in my checked bag, if I’m checking anything. Keep toothbrush, toothpaste, contact solution (this one actually goes in one of my gallon-sized ziploc bags since TSA classifies this as MEDICAL), and anything I might need for the first 24 hours after I arrive, should my luggage get lost. These toiletries (and lip gloss, lotion, etc from my purse) go in a quart-sized bag. These also have to come out for security. (In other words, when I get to security, I have three ziploc bags to pull out of my carry-on.)

-I bring an empty Nalgene bottle with me. That way I can fill it up on the other side of security without worrying about if I’m going to drop that flimsy paper cup from Sbarro’s OR what I’m going to do for liquid if I need to take a pill in between beverage service on the plane, particularly if it’s during a period of “rough air.”

Three Coloured Nalgene Tritan Wide Mouth Water Bottles

Take that, $5 bottle of airport water!

-When I pack my carry-on, I make sure these items (plus wallet/ID/boarding pass) are towards the top of my bag, so that when I get to security, I just have to unzip my carry-on, pull them out from the top, and put them in a plastic bin for x-ray.

-Once I get through security, I re-arrange my carry-on so that whatever I’m reading/listening to on the plane is easier to find, which sometimes means sticking my earbuds in my pocket or wrapping them around my phone.

-I usually have a lightweight change of clothes in the bottom of my bag, and that stays in the bottom since I’m less likely to need that. That usually also lets me layer more or less if I need to. I try to stick a light sweater in there, too.

sick_dumb_mug- I also keep some kind of healthy-ish snack with me- things that I know my stomach handles well. Trail mix, dried fruit, a cookie, etc. My dietary wants/needs seem to change a bit when I fly. For example, if I’ve got a layover and need to eat, I do better with really soft stuff that *doesn’t* have probiotics in it, like ice cream. For whatever reason, probiotics make my IBS flare up when I fly, either shortly before, during, or shortly after. So, no yogurt for me.

- Purse: some trips I have kept my purse separate from the rest of my carry-on stuff, but I find it’s easier to manuever through an airport if I can pack the contents of my purse in my carry-on, especially if it’s a long flight. Sometimes this means packing the purse itself in my checked bag, but keeping the contents in my carry-on.

Key things to know about flying with a chronic illness:

If you don’t want to go through those body scanners, you can request a pat-down instead. They will still use the magnetic wand on you unless you have a specific reason why they can’t (like a pacemaker). If this is the case for you, make sure you have some kind of documentation showing that you have a pacemaker. Your cardiologist should know what you need. It’s just not worth the risk! It is up to you to decide whether you want the pat down or the x-ray. Neither is really a good option for someone with Fibromyalgia, but those seem to be the options that TSA has given us.

TSA allows you to take anything through of ANY quantity, as long as it is MEDICAL.

So, if you have a dysautonomia issue (POTS, etc) and you need to keep a specific formulation of a rehydration solution with you, you can bring it through security. It does need to be in the original bottle/packaging. And to be safe with something like that, I’d have a doctor’s note, pharmacy info (from the pharmacy, if it’s an Rx) with it. As noted above, TSA considers contact solution to be a medical necessity, so you’re actually not limited to just a 3.5 oz bottle. I’ve actually taken huge containers of powdered medical food through without a problem (think 60 oz). Just a few weird looks from other passengers. Meh.

All medications HAVE to be in the original bottles. I’ve never had a problem with pills in a med planner (technically, I don’t think they’re supposed to let those through, but I could be wrong on that), but I also make a point to put the Rx bottles in the same clear plastic bag as the med planner. If you get super-huge bottles for 3-months worth of meds at a time, you can ask your doc to write a script for however many pills you’ll need during the trip + a few extra in case of emergencies. Obviously, there might be some insurance authorizations required here for extra fills. I’ve had doctors prescribe the same drug at half dose for me before specifically for a trip- that usually gets around the insurance pre-authorization/extra fills issue. It also gives me more flexibility with dosing if the normal 20mg dose of Flexeril is not enough for the added stress of travel. Just be sure that you have a conversation about that kind of thing with your doctor before your trip!

If you think you’ll be fine without a wheelchair, but then get to security and feel sick, let somebody know. TSA CAN wheel you through security if you really need it. You can always ask for a wheelchair at any point during your travel, whether you’ve requested it ahead of time or not. If you know you’ll need a chair, note that on your reservation (there’s usually a box to check), and call the night before/morning of to confirm that someone will be able to meet you with a chair when you arrive at the airport. That person will also escort you through security, at no charge. It is, however, appropriate to tip your wheelchair wrangler. ;-)

Do you have other travel tips? Let us know! Join us on Facebook at: https://www.facebook.com/groups/120979651274630/ *

 

*Please note that we do NOT allow spam of any kind in this group. We’re happy to hear about your experiences with different therapies, but any posts that even remotely look like spam will be treated as such. We also do not tolerate trolling or verbal/emotional abusive posts. ;-)

New and Improved- the “Good Doctor” list!

Looking for a new doctor? Need to find a good acupuncturist? Check out our new “Good Doctor” list! If you’d like to make any additions, follow the directions at: http://www.azfibro.com/resources/good-docs/

Questions? Comments? Send them my way at info@azfibro.com.

Social Support: Simons Physical Therapy, Sat., March 1st at 1pm

Join us on Saturday, March 1st at Simons Physical Therapy to learn why PT can be helpful for Fibro, including information on strain/counter-strain techniques to help relieve muscle pain, and dry needling to relieve knots/adhesions.

This event is open to everyone, please bring a friend or family member if you would like. :-)

Simons Physical Therapy is located at 8703 Golf Links Rd, between Pantano Parkway and S Harrison.

Please note that the lunch at BJ’s that had been previously scheduled for March will be rescheduled for April but as a picnic lunch. ;-)

If you need more specific directions or get lost, please call Jess at 520-979-6097.

Medical Cannabis and Sleep

Sleep. This is the final frontier for many Fibromyalgia patients, since quality of sleep can be the difference between a good day and a bad day.

I received a Fitbit device for Christmas, and it’s been interesting to watch the data my FitBit has collected over the last few weeks. One of the features that FitBit offers is tracking sleep. The pedometer feature in this device has been calibrated to track movement during sleep, and its algorithms decide if you’re awake, or simply restless during sleep.

While it is certainly not as reliable as a polysomnography (sleep study), my experience with it has been that it is pretty accurate. When I wake up feeling like I haven’t slept very well, I usually see several points in time during the night when my device has measured me as being awake or restless.

At my doctor’s advice, I have made some slight changes to my Medical Cannabis dosing to achieve better pain control. Specifically, she recommend that I use a dosing method that results in sustained-release (edibles), and therefore pain control that lasts longer (6-8 hours, versus 2-4 with a vaporizer). Here are the results of that, in relation to sleep.

On December 28th, I went without a medical edible before bedtime. I used my vaporizer before bed, with about 10mg (by weight) of medical cannabis loaded into it. I woke up 5 times during the night, with an overall sleep efficiency (as rated by FitBit) of 99%. Not bad.

fitbit dec28

Now, a random night’s sleep while eating a 25mg medical edible one hour before bedtime, plus the 10mg in a vaporizer as I was getting into bed:

fitbit jan22

 

On Jan 22nd, I was not only able to fall asleep much EARLIER (12:35am vs 3:51am on Dec 28th), but I also woke up less frequently throughout the night. Although it took me a few minutes longer to fall asleep on Jan 22nd, I stayed asleep for a longer period of time. The “blip” around 6am was most likely me getting up to let the dogs outside. As you can see, I was able to fall right back to sleep.

In comparison, this is the sleep my FitBit logged for last night. I went to bed last night without an edible, but with about 25-30mg medical cannabis delivered into my body via smoking (combustion):

fitbit feb9

As you can see, I didn’t sleep very well last night at all. I have felt sluggish, tired, and generally not well today. Although it only took me 5 minutes to fall asleep last night, I woke up throughout the night. This tells me two things: 1) my body does not do well with smoking cannabis as compared to vaporizing, and 2) that edible makes a big difference. I did go to bed last night with a moderate degree of anxiety, in relation to planning a wedding. I’m sure that was another factor in why I slept so poorly.

I realize that this data is only pseudo-scientific. It should not be treated as scientific data.  This is not measuring alpha, beta, delta, or REM stages of sleep. At best, this is merely anecdotal evidence. However, my experiences as detailed above have been pretty consistent. I do believe medical cannabis has helped with my struggle with insomnia and poor sleep, and until I see signs indicating otherwise (or develop a condition that would not be favorable with this therapy, like pregnancy), I will continue to use it at night. I have not seen this much positive impact on my sleep from any prescription or OTC drug in the 14 years that I have struggled with insomnia.

Unfortunately, there are other factors that may influence this data, like a specific strain of medical cannabis (some are not good to use before bedtime), and I did not log which strains I used on a particular day. Other factors that may affect these results include: general fatigue levels at bedtime, anxiety, vivid dreams or nightmares, and hormonal fluctuations. While I do think that this data is indicative of overall trends for me, your mileage may vary. Like every other treatment for Fibromyalgia, your treatment may look different from mine. Any specific questions you may have regarding this therapy and your body should be directed to your doctor. If you need general information about medical cannabis and why it can be helpful, please visit our page on medical cannabis at: www.azfibro.com/medical-cannabis.

Free Yoga Class TONIGHT at 6:30pm

Join us at the Wat Buddahmetta Center on 22nd and Swan for a free yoga class! (Cash donations are accepted.) Please arrive a few minutes early to avoid interrupting the class once it has started. You are welcome to bring friends and/or family. :-)

Gentle Yoga with Jose
(Monday)
6:30 p.m. – 7:45 p.m.

Tucson Buddhist Meditation Center is pleased to host Jose for his weekly Gentle Core Yoga class. Jose is a certified yoga instructor and teaches a yoga focusing on the sacrum as a building block on which to to initiate the yoga posture, which is then developed through the breath. The practice is gentle and slowly builds the level of difficulty depending on the student’s ability. Please bring a mat. Open class, drop-in. As with all of our classes, this class is a free offering to the community. Donate as your heart inspires you.

 

** Don’t worry if you do not have a mat- the floor has a very thick rug. I may have to work late tonight, so I am not sure if I will be able to join or not! -Jess**

New Patient-Matching Forum!

Are you looking for a new way to track your symptoms and connect to other patients for free?

HealClick.com is a brand new, patient-run online community that takes patient-matching to a whole new level. The site functions as a social community for patients to give and receive support from one another, and it also allows patients to search treatments and therapies by treatment name OR condition. You can then talk to the patients who have been on the treatments they’ve listed in their profiles and ask them questions about what their experience was like!

For example:

Say you have been diagnosed with Fibromyalgia, Migraines, and Interstitial cystitis. You want to know if there are other patients “out there” who have all three illnesses who have seen an improvement in all symptoms by changing their diet. You’ll still have to search all three conditions, but the results are easier to read than a world-wide-web search.

healclick1

 

HealClick’s algorithms run each night around midnight, giving you a daily update on how well your profile matches other patients’ profiles. To find out why another patient is a “great match,” click on their user name to view their profile.

With HealClick, finding other patients who are similar to you is about as easy as it gets. You can sort results based on how well other patients match up with you (best match), OR you can sort by latest activity, newest, “most helpful” (as voted on by other patients in the community), or by “best effectiveness.” And, possibly the best feature of all is that this website is easy to use, and you don’t have to switch back and forth between different communities to respond to discussion threads that may not directly involve your illness (such as ‘coping with a chronic illness), like some other online communities do.

HealClick’s co-founders and development team all suffer from neuro-immune or autoimmune illnesses, so they know how important it is for patients to be able to navigate their site easily. “Brain fog,” is unfortunately not just an effect felt by Fibromyalgia patients!

HealClick’s co-founders are working with researchers to annoynomize all of this data and allow researchers access to data to help develop new treatments for neuro-immune illnesses.

Just want to chat with other patients? You can do that too! Your home screen is a “feed” of all everything going on within HealClick (you can sort by condition, too!)

healclick2

 

If you think you’re running out of treatment options, check out HealClick.com. At worst, you may find a new friend. ;-)

Want to know more about HealClick’s mission and where they’re headed? They’re currently fundraising to upgrade servers and implement other tech updates to provide more features for patients! http://www.indiegogo.com/projects/healclick-patient-matcher