Chronic Illness: What’s in the Bag?

A popular topic of conversation on Disability Twitter is what we carry with us when we leave our homes to help manage our conditions. Recently, my cousin asked me the same question, so I thought I’d show you all what I take with me whenever I leave my house.

[Note: I try to find small containers to use inside my bag/pack whenever possible, because ounces become pounds when you’re carrying a bag/pack for a long time.]

Safe soap. I repurposed a small spray cylinder by emptying it, cleaning it, and filling it with a soap that is safe for me to use. I react to the commercial soaps available in public bathrooms, so carrying my own soap with me allows me to wash my hands when I’m away from home.

Alcohol wipes. These have a multitude of uses, including sanitizing my hands and inhaling the vapors as an anti-nausea technique. Since I am allergic to hand sanitizer, this is what I use as an antiseptic. They’re also useful for cleaning my hands/face when I have been exposed to an allergen.

Water bottle. I actually carry two. An 800ml (27 ounce) bottle filled with filtered water for drinking, and a 12 ounce bottle filled with 8 ounces of filtered water for mixing with a medicine that requires diluting. [An 8 ounce water bottle would be more efficient and take up less room, but I couldn’t find one.]

Tissues. For runny noses, etc.

Lip balm. For dry lips.

Sunscreen. A small container of safe unscented sunscreen, meaning I don’t react to any of the ingredients. I use a mineral/barrier sunscreen for my face.

Foam ear plugs. Good for loud movies, etc. I keep a pair in a purpose-built container My Boomer Parent got at an air show. You could find something similar online. Ear plug holders are also often available at military uniform stores.

Rescue medicines. I always have migraine rescue medicines in my bag in case I have a migraine flare while I am out. I also carry Epi-Pens with me due to the risk of an anaphylactic reaction that comes with my MCAS (Mast Cell Activation Syndrome.) Additionally, I always carry Benadryl liquid-gels to treat mast cell reactions.

I wanted other people to be able to easily find my Epi-Pens in an emergency, so I found this clear case online and added a sticker I also found online.

Daily medicines. If I’m going to be gone during a time I need to take my daily medications, I make sure I have them with me. If there is any chance I might be delayed and be out when I am due to take my evening meds, I take a dose of them with me.

OTC (over the counter) medicines. The basics: NSAID; pain reliever; antacid.

Safe snacks. I carry raw almonds because they are good for a long time and don’t have to be temperature-controlled. A protein snack helps when I am getting a migraine flare. If I’m going to be gone all day, I’ll often take an RxBar as well. The carbs give me an energy boost.

Electrolytes. I often find that taking electrolytes helps reduce a migraine flare or mast cell symptoms. I prefer a brand that comes in capsules, which I can easily wash down with water. No muss, no fuss.

Ink pen. I carry an ink pen with me that has a grip that I can comfortably use.

Small notepad. So I can write things down, because my memory’s not as good as it used to be.

Sunglasses. A necessity for migraineurs.

Face mask. I carried (and used) face masks long before the pandemic, to help avoid inhaling fragrances. I use a cloth N-95 mask.

Cefaly. If I’m going to be gone all day, I take my Cefaly device with me in case I experience a migraine flare. This device stimulates the vagus nerve and helps reduce or eliminate migraine pain. I have a Cefaly Dual, which is much smaller than the original. It’s easy to take it with me in its protective case.

The Basics: phone; wallet; keys

{I would have included more pictures, but Word Press wouldn’t upload more than one for some reason.]

What do you take with you when you leave the house?

Now We Are Six: On Reaching My Sixth Year of Blogging

Image of a birthday candle in the shape of the number six with colored dots inside a red outline .

Today is the 6th anniversary of my first blog post. I’m still here, but the blog has not grown at all. I have a lot of complicated feelings about that.

Anyway. I originally intended this blog to be a source of scientifically-supported wellness information. I wanted to provide the information I couldn’t find on the internet about what specific medical procedures were like from the patient’s point-of-view. As I lost faith in traditional medicine, I wanted to know whether alternative therapies were scientifically tested, and whether they were worth the time and money. I still do want to know these things and to provide this information.

But, over time, I stopped thinking of myself as someone who was temporarily ill and who could be healed if I could just find the right cure. I realized that chronic illness is not the same as acute illness – often there are no cures and there may not even be effective treatments (traditional *or* alternative).

In my search for answers, I found online chronic illness/disability groups. They helped me improve my quality of life. And they taught me that it was okay for me to identify as chronically ill and disabled. This identity shift, in turn, has changed my perspective on many other things. I now see the ableism that is present in so much of the wellness industry, and the internalized ableism within myself. American society strongly preferences the abled. In an age of advanced medicine, Americans are no longer accustomed to death or disability, and they’re not comfortable acknowledging it. Even during a global pandemic, death and disability are being ignored.

The reason I bring this up is because you may notice a change in this blog from a perspective of someone who is striving to return to being abled to that of someone who is learning to accept that chronic illness and disability are (typically) permanent. In the beginning, I tried to be generic, thinking I could be all things to all people – that an impersonal, objective blog would appeal to the greatest audience. Obviously that didn’t work.

So, going forward, you’re going to experience more of who I am on this blog. Who I am is a military veteran who was accustomed to being highly competent, fit, and exceptionally healthy until several health conditions disrupted my entire life. I’m still coming to terms with that. In fact, dealing with waves of grief and frustration as I attempt to find meaning in my altered life may be the work of a lifetime.

So, if you want to read about the experiences of a person who transitioned from well to chronically ill and disabled starting in their thirties and accelerating in their forties and who is struggling with all that that entails, then please stick around, or hello and welcome. Even if you’re still healthy and abled, there might be more for you here than you think. And if you, yourself, are chronically ill/disabled? Well, you might not like all of the content either. After all, some people have been chronically ill/disabled from birth, or from early childhood. Listening to me whinge about having been fit & healthy and mourning its loss may not appeal to you either.

But what have I got to lose? My handful of followers? My zeros of earned income?

It’s not going to be easy for me to be more transparent about myself and my journey. The internet can be a harsh place – especially for marginalized community members. And some people will argue that I am not marginalized enough – that I still have many areas of privilege, which I do not deny. Hopefully some people will decide that they are interested in my journey and want to follow along.

Bottomline: In year six of this blog, the content is going to change a bit. You’re welcome to join, stick around, or wander off.

Updated Morning Checklist

Almost 6 years ago I posted a morning checklist. Back then it was a bit more wellness-oriented, but after a recent Twitter conversation I decided to update it to reflect my current chronic illness/disability lifestyle.

Morning-Health-Checklist-UpdatedDownload

I intend to print this one out and use it to help me to remember to do the important things I need to do to care for myself.

Currently, I find that I sometimes forget to take my famotidine (which I offset from my other morning meds because I find my H1 blocker is less effective if I take famotidine at the same time. [And yesterday I forgot to take ANY of my morning vitamins/supplements/medications!]

Without a checklist, I find that I often forget to do important parts of my health and hygiene routine – especially on bad brain fog days. So I am attempting, once again, to develop a habit of running checklists to make sure I’m accomplishing the important items. I plan to have not only a morning checklist and an evening checklist, but also weekly/monthly checklists that cover important items like washing my sheets, changing the air filters, and making sure the batteries in the smoke detectors are still good.

What do you think about using checklists as a memory aid? Have you ever tried it? Would you? Please share in the comments.

Flying While Chronically Ill/Disabled

The question comes up from time to time on Twitter: How do you fly while chronically ill/disabled? I can’t speak to flying with a wheelchair, as I am not a wheelchair user, but this is how I fly while chronically ill/disabled:

First, I pack all of my medications in my carry-ons. You should never pack meds in your checked luggage in case the bags are lost, leaving you with no meds. Plus, the passenger compartment is temperature-regulated, whereas the baggage compartment is not; temperature-sensitive medications may be ruined by flying in the baggage compartment.

Most airlines allow a free carry-on for medical devices/medications, as long as it meets the carry-on size requirements. I have a small bag that sits on top of my wheeled carry-on, in which I place all of my medications (and ONLY my medications). You cannot place any non-medical/medicinal items in your free bag – don’t mix-and-match, or you may be charged for an additional bag or prohibited from having it.

I typically travel with my medications sorted into weekly pill caddies, which I place in clear zip-top bags so that if a compartment accidentally opens, the pills are still contained. Some states/countries do require prescription medications to be in labeled containers; in which case, I place my non-prescription medications & supplements in the caddy and leave my prescription medications in their original containers. You are not required to declare medications in pill form to the TSA.

I have some liquid medications which exceed the TSA 3 ounce maximum. I pack all of my medications in a separate carry-on, and I let the TSA agent know that I have liquid medications in that carry-on, as per TSA guidelines. You are not required to put liquid medications in a clear, zip-top bag. I leave mine in their protective packaging. I *do*, however, bring a copy of the prescription with me, in case there are any questions. I have never needed to show it. But I’d rather have it and not need it than need it and not have it. Especially when traveling internationally.

I also have a medication which uses a syringe. I declare that to the TSA agent upfront, when I declare my liquid meds, as per the TSA guidelines. They are permitted to be in carry-ons.

After I have packed all of the medications I will need for the duration of my trip in their carry-on (plus one or two extra days, in case my return is delayed), I pack my “personal item.” Typically, my personal item is a backpack.

When I fly, I make sure I have foam ear plugs, because planes are noisy (I place them in my pocket after clearing TSA so that they’re easily available for flight). [Some people prefer specialized ear plugs that help you equalize your ear pressure during the pressure changes that happen in-flight.] I also pack lip balm (flights are very dry), safe snacks, an empty water bottle (I fill it once past TSA), an eye shade (for sleeping on the plane), sunglasses (for looking out the window), an inflatable back pillow, a light layer (jacket, sweater, etc.; flights are often chilly), facial tissue (Kleenex), and all of the medications that I will need for the entire travel day (if I get delayed and need more meds, they’re in the meds carry-on). If you intend to sleep during the flight, you might want to pack a neck pillow. I also wear a hat, to shield my eyes against artificial lights and reduce that migraine trigger.

I pack fragrance-free soap and alcohol wipes so that I can clean my hands often (I am allergic to hand sanitizer), and I also use the wipes to clean the surfaces at my seat on the plane (seatbelt buckle, arm rests, tray table, etc.). Perhaps this is no longer necessary in the age of COVID, since most airlines spray disinfectants throughout the plane.

Even before COVID, I wore a face mask when flying due to my fragrance/chemical allergies. People are increasingly inconsiderate of others in public spaces, spraying all kinds of fragrances. [I once flew with someone in the row behind me spraying a different essential oil into the air about once an hour.] And public spaces are increasingly fragranced – like the inaccessible bathrooms at the Denver airport (DEN) which have artificial pine fragrance pumps.

In addition to packing the daily medications I will need on my travel day, I also pack all of my rescue meds in my backpack (“personal item”). If I have a reaction to an environmental allergen or a food, I need to have my rescue meds readily available. I also pack over-the-counter (OTC) medicines that can treat various potential maladies during my trip: pain reliever; NSAID (anti-inflammatory); indigestion meds; etc. When traveling abroad, you might want to pack an anti-diarrheal medicine. Also consider packing/wearing medical braces to support injury-prone body parts.

Because my feet/ankles swell when I travel (edema), I wear compression socks and comfortable/adjustable shoes [such as Teva sandals with adjustable velcro straps]. They are also easy to slip on/off at the security checkpoint. In fact, I make sure my entire outfit is comfortable – why be uncomfortable while you travel? When I am waiting near the departure gate, I prop my feet up on my carry-on to try to reduce swelling. I don’t subscribe to slipping off my shoes during flight. Air travel is very safe, but I don’t want to be shoeless like Tom Hanks in Castaway if we *do* need to egress in a hurry.

As mentioned earlier, I use a wheeled carry-on so that it can carry its own weight, rather than me having to do so. If you cannot lift a carry-on up to the overhead compartment, make sure you get a carry-on that will fit under the seat in front of you.

When flying, I do as much as I can to streamline the process, like checking in online. When possible, I only take carry-ons – no checked bags. If you struggle with carry-ons, you might want to check as much as possible. I build lots of slack into my schedule, making sure I arrive with a generous cushion of time to get through bag check, security screening, gate changes etc., knowing that it will take slightly longer for me to process through security, and longer for me to walk through the airport.

I also try to eat as clean as possible on travel days to try to prevent flares. As I mentioned, I pack safe snacks and a water bottle so that I always have *something* I can eat and drink. It is important to stay hydrated – airplane air is very dry, and it can be easy to forget to drink as much water as necessary when traveling.

I also make sure I have notified my credit card company that I am traveling, and I carry some cash in case I run into any problems using my credit/debit cards. I also streamline my wallet, cleaning out and leaving at home anything I don’t need during my trip – that way, in case my wallet is lost or stollen, I don’t have to cancel/replace as many things.

If you require extra assistance (an airport wheelchair, an airport guide, a ride on the airport shuttle, or special procedures at TSA), be sure to contact the airport/airline/TSA ahead of time to coordinate. For example, TSA Cares helpline for chronically ill/disabled is 1-855-787-2227.

If this post hasn’t addressed your specific concern, there are answers to many other questions about flying with disabilities and medical conditions available on the TSA website. Go to their page and select the relevant situation from the pull down menu in the box.

Travelers with chronic illness/disability: What are your tips/tricks/hacks? Please share your knowledge in the comments.

10 Minute Micro Physical Therapy

It’s hard to start/resume a good habit. I’ve been struggling to resume my home physical therapy (PT). And then I remembered my 10 minute micro walk hack. And I realized I didn’t have to do an entire hour-plus of physical therapy. My exercise ball therapy consists of 5 exercises that are 2 minutes each – a perfect 10 minute micro PT session.

I don’t have to start with the whole routine; I can start with 10 minutes on my exercise ball. That’s not daunting. All I have to do is 10 minutes of exercises – while sitting on my exercise ball. I can even do it in front of the TV. All I need are the exercise ball and a timer. I don’t have to wear exercise gear – I don’t even have to wear shoes. Nothing special, fancy, difficult, or time-consuming.

Hopefully it’ll be a building block, and I can eventually add back other exercises and work my way up to a longer PT session. But even if all I do is resume a regular practice of 10 minutes on the exercise ball, it’s still strengthening my core muscles, which are essential for a healthy back and probably help keep my shoulders in their sockets as well.

And it’s so much easier to commit to a daily 10-minute routine. So that’s where I’m starting. I know PT is essential for maintaining/improving my health. But I also know that pacing is important for maintaining my health. And I know that it’ll be much healthier, psychologically, to try to take it one baby step at a time and amass a series of small victories than to attempt to resume an hour-plus-long physical therapy session all at once and fail.

So here I go (partly inspired by @bennnesb and her PT streak). I’ve done my 10 minute micro PT tonight, and I hope to do it again tomorrow. Baby steps. Micro hacks toward better core strength and muscle strength, which is so crucial when one has connective tissue issues.

My First Podcast Interview: No End In Sight Podcast

The thumbnail image that appears on my episode of the No End In Sight podcast: One Sick Vet logo [the text One Sick Vet in white letters on a variegated blue background] overlaid with the hexagonal Möbius logo of No End In Sight, also in white

Another first for this blog/blogger: I was interviewed by Brianne Benness for her No End In Sight podcast! Brianne has founded and fostered a great community for chronically ill/disabled ppl on Twitter (#NEISVoid), and I was excited to have the opportunity to be interviewed by her for her podcast. The interview is fully transcribed, so you can listen to it or read it, whichever works for you. And then you can check out all the other interesting personal stories featured on the podcast.

NEIS Interview: 7 NOV 2020

Episode 74, posted 19 JUN 2021

[CONTEXT: This interview was recorded in the U.S. during the COVID pandemic, before any vaccines were available.]

74 – Crew Dog

Items Referenced During the Interview:

Applying for VA disability – My story of applying for VA disability benefits many years after separating from the military – a guest post I wrote for The Military Guide.

Privilege, Hard Work, Luck – Tread Lightly Retire Early “We’ve been so privileged, but we’ve also worked hard and with intentionality. Privilege, hard work, and luck go hand in hand, and just because hard work is true doesn’t mean you can’t also acknowledge the parts in play that are out of your hands.”

Secondary Gains/Primary Losses – Laura Elliot @TinyWriterLaura “The secondary gains theory makes no sense when compared with the primary losses. Like, sure, 5 years after becoming disabled & after 16 months fighting the DWP I now get £500 a month! I lost: a lucrative career in journalism and the ability to leave my house ever! Such gains!”

Allergic Reaction to Chlorhexidine – My blog post about discovering a severe allergy to the antiseptic Chlorhexidine while pre-op at a VA hospital

Lisa Klimas – Founder of MastAttack, a website that features scientific information about Mast Cell Activation Disorders, and the MastAttack Facebook group

Mold Elimination Diet – Dietary advice I received from my allergist due to my diagnosed mold allergy; this is the exact handout he gave me

Low Histamine Diet – This one is a bit trickier. Histamine levels in foods vary depending on a number of variables, such as how they were transported and handled. There is no one definitive histamine-in-foods list. Many people use the Swiss list, which may not include popular foods from your culture/country/region.

Micro Walks – My exercise pacing blog post about my technique of taking very short, manageable walks, which I call micro walks.

Brianne melting: No End In Sight podcast, Episode 1 (around minute 51)

Crip Camp Virtual – A series of summer workshops in 2020 about disability activism/advocacy, inspired by the movie Crip Camp. I was fortunate enough to be able to attend the entire series, which was offered online.

Applying for VA disability – Here are some resources from people who successfully applied as they were separating from active duty, rather than years later, like I did. Here’s a guest post done for my blog. And here are a bunch of posts on VA disability from Doug Nordman‘s blog, The Military Guide.

Health Conditions Mentioned:

Migraine

  • American Migraine Foundation (AMF), What is Migraine?
  • Migraine with Brainstem Aura (formerly known as Basilar or Basilar-type migraine): NIH resource; AMF resource
  • Vestibular Migraine (formerly known as Migraine-Associated Vertigo): Johns Hopkins resource; AMF resource

Mast Cell Activation Syndrome (MCAS)

Connective Tissue Issues/Ehlers-Danlos (EDS)/Joint Hypermobility Syndrome (JHS)

  • Ehlers-Danlos Syndromes (EDS): NORD resource; Ehlers Danlos Support UK resource
  • Joint Hypermobility Syndrome (JHS): NHS resource; Hypermobility Syndromes Association (HMSA) resource

Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS)

COMMENTS? Please let me know what you thought of my first podcast appearance.

Cool Project: “Dear Problem Patients”

My online friend Brianne Benness wrote a great piece about living with chronic illness, called “Dear Problem Patients: An Open Letter to Anyone Who’s Ever Felt Dismissed by Their Doctor.” And then she decided to turn it into a video collage spoken piece voiced by #OwnVoices chronically ill/disabled people.

Not only is it a really helpful and powerful essay, but the spoken piece is cool too, and I had the honor of participating (anonymously). Check it out – you may find it resonates with you too.

And if you like that, you might want to check out Brianne’s podcast. Many of the podcast episodes have transcripts, and she is working toward having them all transcripted, for accessibility. [I have been interviewed for this podcast, and I’ll let you know when my interview/podcast episode is available.]

Remember, you might be a “problem patient,” but you aren’t alone. There are a lot of good resources available to you, and the chronically ill/disabled community has a strong and vibrant presence online.

My Experience with the COVID-19 Vaccine

A COVID-19 Vaccination Record Card, with two doses recorded

ICYMI, I tweeted about my experiences with the first and second doses of the Moderna C-19 vaccine, and I thought I’d share those experiences on my blog as well.

I am pro-vaccine, and very grateful to have been able to get vaccinated against COVID-19 and for Spousal Unit to have been able to get vaccinated as well.

Crew Dog, onesickvet.com

Spousal Unit & I were able to get our vaccines through the VA, for which I am grateful.

EDIT: Spousal Unit & I did not premedicate with Tylenol, NSAIDs, or antihistamines, due to cautions from the CDC that doing so could blunt the immune system’s response (and antibody development) or mask an allergic reaction. We waited at least 24 hours before taking any NSAIDs or Tylenol, although I took my normal antihistamines as prescribed.

After our first doses, Spousal Unit had a sore neck and shoulders starting about three hours afterward, and lasting about a day-and-a-half to two days. They also had tingling in their arms and hands for several days. My injection arm was very sore for several days, but I was otherwise fine.

However, as expected due to my health conditions, I had a much stronger reaction to the second dose.

Here’s how I reacted during the first 24 hours after my second dose of the Moderna vaccine:

We received our second doses of the vaccine in the afternoon. Initially, I felt fine, but I became increasingly tired as the day went on. About five hours after receiving the shot, I started having mild intermittent dizziness/vertigo. Eight hours after receiving the shot, I was very tired and went to bed, but I woke up frequently throughout the night due to muscle soreness.

I woke up eight hours later (sixteen hours after receiving the shot) to use the bathroom. I had been noticing a mild to moderate headache during the last few hours of intermittent sleep. I developed mild to moderate chills (shivering and teeth chattering) while using the bathroom, and promptly returned to bed and piled on extra layers of blankets.

Sore from so much lying down, I emerged from my bed blanket cocoon about four hours later (20 hours after receiving the shot). My neck muscles were moderately sore, I was fuzzy-headed, and I still had mild to moderate chills. I created a blanket cocoon for myself on the couch.

About two hours later, I started having nausea. I also had a fever and mild chills, and the dizziness persisted. One hour later (23 hours after receiving the shot), I had a fever of 101.4 degrees, mild chills, persistent dizziness, nausea, and I was very tired and thinking about taking a nap. I drank some green slime and the nausea eased. Twenty four hours after receiving my second dose of the vaccine, the fever, chills, body aches, tiredness, and dizziness persisted.

And here’s how I reacted during the second 24 hours (hours 24-48) after receiving my second dose of the Moderna vaccine:

Twenty-five hours after the injection my pulse was very loud, which made it difficult for me to fall asleep. I slept for about 1.5 hours, shedding blankets one layer at a time as I warmed up. When I woke up (shot + 26.5 hours), my tinnitus was very loud, my blood pressure was 144/94, my pulse was 124, oxygen saturation was 94%. My muscles and connective tissue were stiff and sore, and I was still fuzzy-headed.

Approximately 31 hours after the second injection, I ate some chicken soup for dinner. (I didn’t have the energy to eat anything else.) My temperature was still 101.4. All symptoms persisted.

At bedtime, I took Tylenol and naproxen sodium to help ease symptoms and hopefully get some sleep. I slept eleven hours, and awoke feeling much better. My blood pressure was 128/89, my pulse was 92, my oxygen saturation was 97%, but my temperature was still 101.4. I was not dizzy, was much less fuzzy=headed, and had no nausea. My tinnitus was at its normal volume, and I felt much more normal.

Forty-eight hours after my second dose of the Moderna vaccine, I felt markedly improved. My tinnitus was louder than normal, my blood pressure was 134/96, my pulse was 88, my oxygen saturation was 96%, and my temperature was finally back to normal – 98.6, although I still felt feverish. I was still taking it easy, but I was able to think again.

Bottomline: The day after the vaccine was rough, but I felt much better 48 hours later.

Meanwhile, Spousal Unit, who has a typical immune system, did not have much of a reaction at all to their second dose of the Moderna vaccine. Approximately three hours after the shot, they had a stiff and sore neck and shoulders. About twenty hours later (twenty-three hours post-injection), they had a one degree rise in temperature, stiff and sore neck and shoulders, and they stated that their pain level at the injection site was a three (on a ten point scale). The second dose of the Moderna vaccine did not prevent them from doing anything they normally would.

I was glad that we had frozen meals ahead of time, in preparation for one or both of us not feeling well. I had no interest in eating anything other than juices and soups for forty-eight hours after my second Moderna injection (due to lack of energy and brain power), and it was great knowing we had those in the freezer, and all we had to do was thaw them out. We had frozen other meals as well, but I was not interested in eating anything I had to chew.

The third and fourth nights after my second injection, I had insomnia that kept me up all night. I assume this was due to the raised histamine levels in my body due to mast cell reaction to the perceived threat. It took me several weeks to get back to my normal sleep schedule.

I am relieved to have been able to receive the vaccination. My immune system’s response definitely took me down for a couple of days, but I have had no long-lasting negative effects.

How has your experience been? What did you do/wish you had done to prepare for potential down time?

Green Slime for Breakfast: Update

A mason jar filled with frozen green slime
A mason jar filled with frozen green slime

In 2017, I wrote about the green juice that I had started drinking for breakfast, which Spousal Unit & I jokingly call “green slime.” Surprisingly, I am still drinking green slime for breakfast in 2021, and I thought I’d give you all an update, since it keeps evolving.

As before, the basic recipe comes from one of the low histamine chef Yasmina Ykelenstam‘s cookbooks – she calls it “green lemonade,” although the recipe includes no lemons. But I have continued to adapt the basic recipe. Now, instead of apples, I use pineapple to sweeten it. This is partly because I may have a bit of Oral Allergy Syndrome (OAS) [cross-reactivity to apples due to my birch allergy], and partly because it is easier to source good pineapples than good apples where I now live.

My green slime is still full of green vegetables, and I still add chia seeds (the fiber really helps keep me regular). Over the years, I have found that I get hungry within an hour of drinking my juice, and I think it’s because there’s not much protein in the juice (just the protein from the chia seeds), so I now add almond powder to my green slime. It dissolves well with concentrated stirring, and adds a hint of an almond flavor. And I don’t get hungry afterward any more.

Recently, I have added a quercetin supplement to my routine, because research indicates that it has utility as a mast cell stabilizer and antihistamine. I have been buying a powdered form of quercetin, and after trying it separately for about a month, I have recently started mixing it in with my green slime. It does not mix in as easily as the almond powder, but it will eventually dissolve, and it makes my daily regimen easier by streamlining two steps into one, rather than drinking green slime and then later remembering to drink the quercetin dissolved in water or juice.

In three-and-a-half years of green juice every day, we have gone through our first juicer and are on our second. And the process has changed a bit: rather than making fresh green slime every morning, Spousal Unit makes a batch of green slime and freezes it in mason jars. Then I stagger out to the kitchen daily, after I’ve woken up and taken my morning meds, and thaw out one jar in the microwave. [Remember to remove the metal lid first.] After it has thawed, I mix in the chia seeds, almond powder, and quercetin. I let it sit for at least 30 seconds to reconstitute the chia seeds (making sure to stir frequently, or the seeds form a gelatinous clump that has a rather off-putting texture), and then it’s good to go.

For me, green slime is an easy first meal of the day – don’t have to make any decisions, don’t have to use much energy, and I get fruit, veg, calcium, potassium, iron, protein, fiber, and a little healthy fat.

Plus, if you happen to overheat it, it’s no big deal – green slime tastes good warm or cold.

Hack 1: If I didn’t have Spousal Unit to prep the fruit and veg, I would use canned pineapple chunks and buy pre-chopped veggies.

Hack 2: Sometimes we save the solid output from the juicer (the fruit and veg pulp) and freeze it in small jars to mix into omelets or egg muffins. Another way to sneak fruit & veg into your diet.

So there you have it – I’m still drinking green slime for breakfast three-and-a-half years later. We’ve tweaked it a bit to better suit my needs and to make life easier for Spousal Unit. It tastes good, and is a way to “sneak” fruits and vegetables into my diet. [Spousal Unit prefers to have a bowl of oatmeal for breakfast.]

What meal hacks do you use? Please share in the comments.

Reflections on Five Years of Blogging about Health Issues

Sunrise. Clouds reflected on still water.

Time has lost all meaning during the COVID pandemic, but it is January 2021, and that means it is my five year blogaversary. It’s been quite a ride. I don’t know what I expected when I started blogging, though I must admit, I never thought it’d be five years later and I’d still have little to no interaction on my blog. I guess I thought I’d be starting a dialogue, but it’s been five years and it’s still almost exclusively a monologue. Oh well. At least I’m practicing my writing skills?

A lot has happened in the past five years. Since I started this blog, I have had multiple medical procedures, multiple surgeries, and had to withdraw from grad school and from my research team for medical reasons. We also had to abandon our “forever” home for medical reasons, moving to a different climate and elevation. Never have I felt like such a failure.

But I also joined Twitter about a year-and-a-half ago and became part of the amazing online disabled community. I gradually transitioned to accepting my identity as chronically ill and disabled, and had the opportunity to participate in the empowering and enriching workshops presented by Crip Camp Virtual during the summer of 2020. Thanks to all the great, knowledgable folks on Twitter and at Crip Camp, I am now reading about the history of disability, about theoretical frameworks of disability, and about the experiences of other chronically ill/disabled people. Having a supportive community that understands my struggles has been invaluable, and I don’t know how I would have been able to endure COVID quarantine without them.

Due to the moral support of other chronically ill folks and their generosity in sharing information, I have finally received a diagnosis for one of my conditions, mast cell activation syndrome (MCAS). And other migraineurs helped me diagnose it when my migraines took a new, frightening turn, which also led to an official medical diagnosis for that as well – hemiplegic migraine. I’m still pursuing some other diagnoses – for example, I know I have connective tissue issues, but so far have not received adequate diagnosis or treatment for that.

I also learned, when we moved, that there is a significant amount of variability within the VA. Veterans do not receive the same level of care across VA facilities. And I learned that transferring between VA facilities is not a simple, straightforward process. My transfer, for example, even though I tried to proactively manage it and even used a care transfer manager, was a nightmare that resulted in me losing access to important medications for months (it would have been even longer, but I paid out of pocket to fly back to my previous facility for care I was being denied at my new location). Additionally, my gaining VA facility would not necessarily accept testing and diagnoses from my previous VA facility – some departments did, but others insisted that any diagnosis that was not from their facility was invalid, and that diagnostic procedures had to be repeated.

When I started this blog, I was fed-up with traditional Western medicine and open to exploring alternative medicine to see if I could find remedies for my symptoms. I now realize that this is a rather common part of the chronic illness experience – we want so badly to be cured, to be healed, to find a way to function without pain and suffering, to find an elixir that will make it possible for us to be more present for friends, family, careers, and ourselves. Some lucky individuals do find something that helps. Many of us do not, and come away from the experience sadder, wiser, and with less money and hope.

However, I have found some things that do work for me during the past five years. Heat and ice therapy are way more powerful than we typically give them credit for – they are a major part of my arsenal now. And physical therapy exercises/gentle stretches are very beneficial for most folks too. I can’t run anymore. I can’t play contact sports anymore. I can’t do a lot of the things I used to do. But gentle motion like Tai Chi is very beneficial, and will help counteract the progression of my connective tissue issues. I have a home NMES (neuromuscular electrical stimulation) device and a bunch of physical therapy devices: foam roller, Tiger Tail, exercise balls and bands, etc. These are non-medication things that help.

I have learned a great deal more about my conditions and how to manage them by avoiding environmental or dietary triggers.

Working with healthcare providers, I also have a medication regimen that helps mitigate my symptoms. I’m doing better than five years ago, when I mostly lay on the sofa all day.

I’m still a long way from where I’d like to be, and I don’t know whether those hopes are realistic anymore. But I can see progress from where I was when my health bottomed out. There is a tension most of us chronically ill/disabled negotiate, between wanting to find answers and solutions, and finding peace with what is. I am learning to live in the now, rather than merely existing while I fight to return to how I was. None of us is guaranteed a future, let alone the future we dreamed of. But, if we let it, chronic illness/disability can teach us how to live fully in the present, how to live as richly as circumstances permit.

Chronic illness/disability can teach us to eliminate the B.S. from our lives and focus our limited energy on the things that really matter to us. Which dovetails with my word of intention for 2021, Curate. Slowly, I am letting go of aspirations and aspirational belongings, striving to retain only the things that are useful/beautiful (à la William Morris). I am pruning away the dead and dying branches.

So there you have it: five years of blogging about health issues has seen my identity drastically change and my knowledge of chronic illnesses vastly expand. I’ve lost most of my abled friends, but I’ve made a lot of new, chronically ill/disabled friends, who are more supportive, knowledgeable, and understanding than my lost friends ever were. I’ve lost one dream/forever home, but gained another. The battle for diagnoses and treatment rages on. I haven’t been able to blog as frequently nor as eloquently as I used to – brain fog is a bitch. But the blog limps along, which is apt.