Fibromyalgia · Medical Cannabis

Got My Illinois Medical Cannabis Card

illinois-medical-cannabis-cardIt’s here! My Illinois medical marijuana card is here!

I went to the Medical Cannabis Outreach mobile clinic on August 13, 2016 for help with my application and fingerprinting, and I received my card in the mail on September 26, 2016.

That’s 44 days from start to finish.

I am relieved that marijuana is now available to me, particularly after fighting through some very difficult days in the past couple of weeks.

The plan is to write about my experiences, which promise to be enlightening. You see, not only will I be able to write about them from a patient perspective, but also as a new user.

That’s right, folks. Aside from a couple of contact highs in college, I have absolutely no experience with recreational marijuana. That’s because when I was growing up about all you could do was smoke the stuff, and that didn’t appeal to me. (For better or worse, no one ever offered me a brownie.)

Also, I had a very real fear of Satan, demon possession, jail and criminal records. So, yeah.

Anyway, my hope is that writing about using medical marijuana to treat my fibromyalgia will accomplish two things: 1.) opening a patient-to-patient dialogue that helps me and others discover what works, and 2.) showing non-patients on the fence about medical marijuana that it’s not something to fear.

Please feel free to use the comments section of any post or my contact form to ask questions along the way.

 

Postural Orthostatic Tachycardia Syndrome (POTS)

Dehydration & POTS: A Mini Self-Study

This weekend I conducted a mini self-study. It included taking about a hundred more pulse readings and just generally being more aware of what I noticed in my body. (I put all that mindfulness practice from my meditation sessions to use and it really helped me evaluate where I am now.)

I’m Not Lazy, I’m Practicing Self-Care

Who am I trying to convince? Why, myself, of course.

My heart rate lowers immediately when I’m lying down, and I feel so much better. Until I started tracking my heart rate, I didn’t fully understand the connection between the position of my body and how good or terrible I felt.

So with the exception of getting up to pee and grabbing the occasional Gatorade from the kitchen, I watched TNT’s Star Wars marathon from bed this weekend. I can’t live like that all the time, of course, but after two days of simply accepting my limitations, I felt better.

All of that’s gone now that it’s Monday and I have a paycheck to earn, but I feel like I’ve found a secret weapon for feeling better.

I Always Wake Up Feeling Dehydrated

gatoradeThis has been going on for a while and increasing in severity. Dry eyes, mouth, sinuses, skin. My lips are permanently chapped. Even my ears are dried out and itchy. Dehydration affects heart rate, so by the time I wake up in the morning, my heart rate is revved up (130-140 bpm), and I have a severe headache.

I had assumed all this dehydration was a side effect of the nortriptyline, so I stopped taking it for a few days to evaluate. The drug might be worsening things, but I feel dehydrated even when I don’t take it. What’s more, skipping it leads to my IBS creeping back. Not. Acceptable. I’m back to taking 10mg most nights.

On the In Sickness + In Health podcast, I heard that patients diagnosed with POTS drink Gatorade to ease their symptoms. My POTS suspicions coupled with my feeling dehydrated all the time got me to thinking that I should give the drink a try.

And, Yay! Gatorade makes me feel better too, sort of. Adding about 16 ounces a day lowers my heart rate by about 10-15 bpm across the board (though the 30 bpm difference between lying down and standing up remains). That means I’m not living my entire day in the target heart rate zone for aerobic exercise. Which makes me feel less exhausted, as long as I don’t try to do anything too bold (like live my life like I did before.)

All of the drinking comes with a price too: frequent urination. Every 30 minutes I’m up peeing, and I’m also up in the middle of the night. Which is bad since I have trouble sleeping even without nature calling at 3 am.

There are no solutions with chronic illness. Only tradeoffs.

One last thing about the dehydration; I am using Blink gel tears three or four times a day. That seems excessive, but maybe it’s not really for someone whose job is staring at a computer screen all day. My eye doctor first told me to use them in, I don’t know, 2011? She said that I had dry eyes and some scratches. But now I feel like I need them way more. Because the eyes and nose and sinuses are all connected, the tears actually sooth my nose and sinus irritation too.

I haven’t been to an eye doctor since we moved to Illinois three years ago. I should probably set that up. But getting dressed and leaving the house is so stinking hard.

 

 

 

Fibromyalgia · Postural Orthostatic Tachycardia Syndrome (POTS)

Sjorgen’s Syndrome?

I. Am. So. Ill. Today.

No Medical Marijuana news links for this week. I think I’m going to move to bi-weekly posts for that. Instead, a few notes about this crazy little autoimmune thingamajig I’m curious about: Sjogren’s Syndrome.

Point 1: Chatting with another Spoonie on Twitter this week, I was reminded that sometimes autoimmune diseases are sero-negative. I mean, I did know this already, but the conversation really got me thinking about how useless my bloodwork has been.

Point 2: Since I’ve mostly convinced myself that I have POTS, and since it is very often secondary to some other condition, I started looking into the possibility that I have some other primary illness that is sero-negative and not fibromyalgia. Perhaps something in addition to fibro or instead of fibro.

Point 3: I read up on Sjogren’s. (You may have read that Serena Williams has it.) I have so very many of its symptoms. There’s a lot of overlap in autoimmune and fibromyalgia symptoms though, so it’s anyone’s guess right now. Still I can check off too many of the items listed in this image from sjogrens.org to not ask my doctor about it.

sjogrens_body

Point 4: I was reading a study abstract (sorry, too tired to look it up and link it right now) that said that people with sero-negative Sjogren’s experience more intense symptoms. I have an appointment with my nurse practitioner (can’t see my primary doctor until late October, and that’s too long for me to wait) on Thursday. I might push for an MRI or see if there’s more we can do to investigate, since my blood isn’t giving up the goods.

Fibromyalgia · Postural Orthostatic Tachycardia Syndrome (POTS)

Why I Think My Autonomic Nervous System Shit the Bed

I didn’t need my morningtime wake-up kisses from Dan and Boomer this morning, because I was staring at the ceiling by 6:20 am, fully aware and urgently needing to pee. I squished my eyes closed and wished for what I wish for every morning: to stay in bed just a little bit longer.

That wish didn’t come true. My bladder wouldn’t be ignored.

***

“Babby’s* up!” Dan proclaimed when I made it to the living room. He put his hands on my shoulders and looked at my wild morning hairdo. “You’ve kind of got this ’80s thing going on,” he smiled while reaching out and gently patting my hair so as not to flatten it. “How are you?”

“I have POTS,” I announced without ceremony. (POTS stands for postural orthostatic tachycardia syndrome.)

He took his hands off my shoulders turned his head slightly and looked at me, one eyebrow a full inch higher than the other.

***

I should probably back up a little. Last week, I made some new Twitter friends in an attempt to embrace my fibromyalgia diagnosis. You see, life is not getting easier for me, it’s getting harder. And I fucking don’t know what to do about it. So I thought maybe connecting with other Spoonies** would be good for me. I joined #SpoonieChat last Wednesday evening, and made a lot of new internet friends. The discussion was nice, but not profound.

The profound part came a couple of days later when some of the Spoonies I had recently followed started tweeting with the #MedX hashtag. One patient, Kirsten Schultz, was gearing up for her trip to Stanford to attend the conference. I was in awe of her. She was getting on a plane, attending days of conferences, speaking, and advocating for other chronic illness patients, all while managing her illnesses.

I spent three spoons just imagining what it would be like to be in her shoes. And that’s not a flippant remark. As an empath, I seem to take on those kinds of burdens just by thinking “What if that were me?”

Anyway, I had never heard of the Medicine X event before, but I was curious and took in what others had to say about it. A day and a half into the conference, I learned there was a livestream. I listened in on a few presentations and tuned in again when my Twitter feed erupted in white-hot anger during an opioid panel discussion with Hurt Blogger Britt Johnson.

I learned so much from #MedX—even from my couch, and I hope to get around to writing about all of it, but the thing that’s most relevant to this post is that I was introduced to the In Sickness + In Health podcast.

shit-the-bedThe podcast has been around for about a year now I think, but I started listening from the very beginning. The first five episodes were interviews with people diagnosed with dysautonomia, a medical term that describes several medical conditions where the Autonomic Nervous System shits the bed.

In those interviews, POTS (one form of dysautonomia) was brought up frequently. The show’s host mentioned a couple of times that she had diagnosed herself with POTS, and then had taken her findings to a doctor for verification and treatment.

***

The symptoms associated with POTS sounded very familiar to me: vertigo, lightheadedness, fatigue, the inability to perform any physical activity without being completely wiped of energy. So I decided to research the condition online***.

What I discovered was that unlike conditions and diseases like fibromyalgia, lupus, and MS, POTS was very easy to diagnose. The criteria are pretty cut and dry. From Dysautonomia International:

The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension.

All a girl really needed to do was take her pulse after changing positions from lying down (supine) to sitting to standing. So I whipped out my trusty cell phone with its heart rate sensor and went to town. (I have moderately high blood pressure that my PCP has been hinting needs medication. Orthostatic hypotension was easy to rule out.)

***

Holy shit! This is why I want to spend all of my life lying down!

Monday afternoon around 2:00 pm, I took a break from work to lie down on my bed and rest. Rest time is something of a ritual for me these days. Using my phone, I took my pulse: 75 bpm. I congratulated my heart for beating so normally.

Then I stood up next to my bed and took my pulse again: 114 bpm.

What the fuck?

I wasn’t walking around. I wasn’t dancing. I wasn’t scared. I wasn’t doing anything but standing still and holding my finger against the sensor. I’ve read that most people notice an increase of only about 10 bpm when standing, so an increase of 39 bpm seemed noteworthy.

I took my pulse all day long Tuesday with similar results.

Then this morning, I got out of bed to respond to that insolent bladder I mentioned. The familiar whoosh of dizziness washed over me when I stood up. I wonder what my heart rate is right now, I thought. So I picked my phone up from the nightstand at 6:30 am: 140 bpm.

Perspective? Target heart rate (THR) for a 36-year-old person during aerobic exercise is 92 to 138 bpm. When I stand up, my body seems to think I’m doing strenuous exercise.

By 6:33 am this morning, I had all the data I needed to diagnose myself, but I kept logging data for the sake of logging data. Sitting on the toilet peeing: 106 bpm. Back in bed to catch my breath (because walking five feet to the bathroom and peeing is hard work, apparently): 83 bpm.

Ahhh.

Bed felt so good, I felt so wonderfully unburdened lying down****.

***

“I’m serious,” I said to Dan, going over the numbers. “I am diagnosing myself with POTS.”

“But you’ve thought you had everything figured out before.” He was skeptical with just a hint of condescension. He tires of my constant yapping about my body, probably because he’s been fighting his own battle with chronic illness for over 20 years. I don’t blame him at all.

He’s “lucky” though; he has the mangled joints, psoriasis, and blood work to prove he’s sick. Whatever I have going on, it’s seronegative*****—meaning there are no definitive markers in my blood—and the only visible change in my body is that now I’m fat and sometimes moon-faced. Doctors shoo me away and tell me to exercise. Their mouths don’t say psychosomatic, but their body language does.

I squelched my anger. Dan was right, in a way. I had suspected that I had celiac disease when I temporarily felt better after going gluten free. Then when I went through GI testing for my IBS (that’s a pretty way of saying I was constantly shitting water) I was sure that the results would reveal I was intolerant to lactose or fructose or that I had small bowel bacteria overgrowth or all of the above. Those tests all came back negative.

I didn’t push the POTS thing with Dan much after that. I’ve got like two spoons right now and an eight-hour workday with virtual meetings to fit in before I collapse this afternoon. Using my brain to justify POTS—even in light of the actual data I have—is futile. It doesn’t pay the bills or put food on the table. In fact, it prevents me from doing those things. So I dropped it rather abruptly.

“Sounds like you need to talk to your doctor,” Dan met me halfway.

“Requested an appointment yesterday through the patient portal,” I replied.


* This is spelled correctly. The term “babby” comes from this internet gem.
** Spoonies are people with chronic illnesses who identify with Christine Miserandino’s Spoon Theory and use it to explain their fatigue to healthy (or non-chronic) people.
*** I get a lot of grief from people for using Dr. Google to self-diagnose. If you are one of those people, fuck you. Get a mystery illness, sit in the exam room while your doctors fat shame you or call you anxious, and then tell me how you still think there’s nothing to be gained from patient stories, pubmed.gov, and  MedX discussions.
**** 
According to Dysautonomia International, the disability caused by POTS is compared to that caused by COPD or congestive heart failure.
***** My only positive result was for an antinuclear antibody (ANA) test, which is inconclusive because some healthy people test positive for it too. But I clearly am not healthy, and it doesn’t logically follow that I am fine because some healthy people test positive for it too.

 

Fibromyalgia · Medical Cannabis

Update: My Medical Cannabis Card Fundraising Campaign

screen-shot-medical-cannabis-fundraiserI received a $40 donation for my medical cannabis card application, and that donation got me to 100% of my fundraising goal. Here’s my Go Fund Me campaign update:

I have great news to report! This weekend I received the donation that got me to 100% of my fundraising goal.

I am excited and so very thankful to everyone that contributed, shared posts on social media, and offered words of encouragement.

When I first set up this campaign, I thought, “It’d sure would be helpful if I raised a couple hundred dollars.” I didn’t have any expectation that I would raise the full $685.

So much about my prolonged illness has felt like a fight — a fight with doctors, a fight with bill collectors, a fight with pain and insomnia, a fight with bad prescriptions, a fight to get out of bed in the morning, a fight against myself, a fight against the bureaucracy of the State of Illinois.

This $685 battle was one a bunch of other awesome people fought for me.

THANK YOU!

It might be a while before I have my card and am able to participate in the Illinois medical cannabis program. If you’d like to follow along with the rest of my progress, please connect with me on my blog:
http://www.emilysuess.com

The Perfectly Posh fundraiser continues until September 25, and proceeds will help me pay for dispensary purchases. (As you probably know, medical marijuana is not yet covered by insurance.) You can join the Facebook event. Joiningg the online event doesn’t obligate you to make a purchase, by the way. You can just lurk and check out the products that are available if you like.
https://www.facebook.com/events/885633958204043/

Thanks again to all of you.

Peace, love, medical dope!
Emily

Unfortunately, Sunday was a high pain day, which means that as a matter of course it was a low mental health day. So I don’t have energy to write much more right now. Stay tuned, though, because later in the week I hope to write about some things I learned from the MedX conference livestream.

Medical Cannabis

#MedicalMarijuana in the News: September 16

cannabis_01_bgiuThere’s a lot of link-worthy news from the past week and I’ve been so sick lately, so I switched up the format a bit to make this week’s edition a little easier to compile.

It might also be a little easier to find the stories you most want to read. Win-win!

Medical Marijuana Legislative News

Marijuana Bussiness and Economy

Medical Marijuana Patients

Medical Cannabis Opposition

Medical Cannabis International News

Fibromyalgia · House and Home

Countdown to Meltdown

I got the first quote for the gutter work and the bathroom remodel yesterday, and then I had to open my Calm app and meditate for ten minutes to stop the building anxiety.

To answer your questions:

  1. Yes, this is just the first quote.
  2. No, I am not obligated to go with this particular company.
  3. No, I didn’t really think we would be able to afford an accessibility remodel of our bathroom anyway. (But I did let myself hope.)

Thing is, anxiety doesn’t stop to ask questions and then respond reasonably based on the information provided. That’s why I had to diffuse the situation with a few minutes of meditation.

meltdownMoney is without a doubt one of my anxiety triggers. I’m not going to rehash the details of the medical bills I’m ignoring or let myself relive the nightmares of trying to sell The Condominium from Hell™, but money stress gets to me in a very painful way.

So when I saw the dollar signs followed by numbers WITH COMMAS, it was fight or flight. And since my fight and flight both seem to be broken right now, the result was what I like to call Countdown to Meltdown.

***

We can keep using our 1963 bathroom for the foreseeable future. If the day comes that I just cannot step in or out of the bathtub, there are more affordable (if a little bit janky) options available. I’ll deal.

However, the gutter and rotting fascia is a problem that needs a solution before it becomes a ginormous problem in need of an even bigger, more expensive solution. I’ve been trying to find other companies to provide a quote on the work without luck so far.

The problems with finding additional service providers:

  • Fibro fog makes it hard for me to speak on the phone. I hated the phone before I was sick.
  • Web searches for residential construction companies don’t turn up much in the way of results. The one company I did find is the one that provided the aforementioned quote.
  • I’ve been pretty much sick since we moved here. We don’t really have a huge network of people to ask for recommendations.

Not that I’ve given up. I’m just not looking forward to the work I’ve got ahead of me.