Author: Crew Dog

There is a certain personality type that is always looking for ways to make things better – themselves, their jobs, their lives, their communities, and possibly even the systems that shape those things. And, to a certain extent, that is useful.

Perhaps you have this personality type. Perhaps you agree with the playwright, George Bernard Shaw, who said:

“The reasonable man adapts himself to the world: the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”

George Bernard Shaw, Man and Superman

Perhaps some people are able to sustain this mindset their entire lives, continuing to alter their environments to suit themselves or to pursue altruistic perceived improvements. Perhaps these lucky few are able to sustain happiness, satisfaction, or contentment.

But perhaps not. Instead, many of us find that we reach a point where we are no longer able to shape our environment.

Toni Bernhard was instrumental (through her books) in helping me really “get” that I would be less discontent, and possibly might even reach a state of equilibrium, if I acknowledged that my expectations did not match my reality and let go of my expectations. At the time I first started contemplating this idea, I was thinking about my chronic illness and disability.

But recently I’ve been thinking about this idea while reflecting on my time in the military. I separated from military service because my last unit had bad leaders and a toxic work environment, and because I was not permitted to make any changes that might improve the situation.

I had reached the point where I woke up every morning dreading getting out of bed and going to work in that environment. But what if I had managed my expectations? What if I had shifted my perspective?

It is not in the nature of most military members (nor is it nurtured) to walk past a problem without attempting to solve it. In fact, military members are strongly encouraged to fix any problem they see or hear about.

But, having given it my best shot, and having been told my input was unwelcome and the situation was not going to change, what if I had adjusted my expectations? Would my work situation have been more tolerable if I had reframed the situation, and told myself that even though the situation was untenable, I was making money for financial independence? Perhaps the frequent deployments would have been less aggravating if I had seen them as opportunities to make tax-free money for retirement, rather than interruptions of my home life and education.

My discontent has always lain in the space between what “should be” and what is.

Crew Dog, One Sick Vet

There comes a point, with chronic illness and/or permanent disability, when you realize that your old life is over and it’s not coming back. People in these communities call it “accepting your new normal.”

Now, you may argue that not accepting “one’s limitations” is empowering, and that refusing to accept that your illness/disability has to change your life will motivate you to get better and to accomplish things you (and the doctors) never thought possible. That may be true for a select few individuals. What is true for a great many more is that, no matter *what* they do or don’t do, their health or abilities are not coming back. And acceptance of this reality, this “new normal,” is the path to good mental health.

Discontent arises from reality not meeting expectations. You can insist that George Bernard Shaw was right, and that forceful visionaries improve their environments by insisting that reality conform to their expectations. But this is also the path to burnout and dissatisfaction.

In the end, the most useful advice may come in the form of the Serenity Prayer, known to many alcoholics:

As we grow in maturity, as we become older, and/or more infirm, may we seek for the serenity, the peace of mind, that comes from knowing what we can change and what we cannot change.

Our spending habits we can change. Sometimes even our salaries we can change. Our eating habits we can change. Many times, our exercise levels we can change. Our sleep habits we can change. (But that may not “cure” our insomnia.) We can try exercise plans, dietary supplements, prescription medicines, but sometimes we eventually have to accept that our bodies are permanently broken or ill or dysfunctional.

And coming to terms with our limitations is incredibly difficult. Most people say it’s an ongoing struggle, rather than a one-and-done. But if, as Toni says, we can reach a point where we acknowledge and observe our situation, experiencing the associated feelings and then releasing them, accepting what is – that gives us emotional freedom. Serenity, even.

So, as you seek to optimize your life, your organization, and/or your community, ask yourself this: What can I change and what can I not change?

Perhaps you’re allergic to shellfish. No amount of wishing it weren’t so is going to change that. Perhaps you have COPD, and living at altitude makes it more difficult to breathe. Maybe you have shoulder problems, and your doctor has told you never to do pull-ups again. Nearly all of us have some kind of limitations. The biggest challenge is learning which limitations to fight and which limitations to accept.

Perhaps the Rolling Stones couldn’t “get no satisfaction” because they should have taken Led Zeppelin’s advice and accepted “what is and what [can] never be.”

Having spent most of my life employing courage to change the things I can, I am now transitioning to developing the serenity to accept the things I cannot change, and the wisdom to be able to identify which is which.

Are you wasting resources fighting a limitation that you cannot change?

Tell us in the comments if you’ve struggled with a limitation and what you learned from that experience, whether it has to do with health, finances, or some other aspect of your life or environment.

I can’t remember how I first heard about minimalism, but I’ve been lurking observing the minimalist movement for years. Not only is minimalism aesthetically appealing, it also promotes good mental health and anti-consumerism.

People are drawn to minimalist lives for a variety of reasons. Joshua Becker decided he’d rather spend his time with his family than on maintaining stuff. Courtney Carver received a chronic illness diagnosis and decided to simplify her life and live it to the fullest. Béa Johnson moved to a smaller home and found that she not only didn’t miss all the things her family had in temporary storage, but she felt happier without them. That experience, coupled with her growing interest in environmentalism led her to inadvertently start the zero waste lifestyle movement.

While I flirted with the idea of minimalism for years, only now am I fully committed. What changed? We moved to a much smaller house, in a hurricane zone.

Crew Dog, One Sick Vet

Our current home is approximately 1,050 square feet. Although twice as big as a “large” tiny home, this is not a lot of space for two adults and a medium-sized dog. Especially two adults who have been mindlessly letting possessions accumulate for decades. Even though we tried to get rid of things before our cross-country move, we clearly did not get rid of enough, and it is now painfully obvious what does and does not fit into our new home.

If I’m honest, I would have preferred a house that was in the 1,800 -2,200 square foot range. That would have given us more room for guests and hobby equipment. But, as it turned out, this smaller house was what we could (mostly) afford in the area where we wanted to be. Location, and all that.

To be fair, our new house does have approximately 500 square feet of covered screened porch, which gives us more room when the weather is nice. However, we are learning that everything in Florida molds, mildews, rusts, or rots, and we need to be careful what we put on the porch.

To a certain extent, this applies inside the house as well, which has been a strong impetus to reduce the number of books and papers we have. Suddenly, this chore has switched from something we’d get around to someday to something we’d better do quickly, before it’s all ruined.

All the old family photos we’ve inherited? Better scan and save them before they’re ruined. Old paperwork we’ve been saving? Same.

As if this weren’t enough incentive to finally pare down our possessions, there’s also the threat of a hurricane destroying it all. We are taking the approach that it’s not a matter of if, but when. The goal is to have all the important photos and papers scanned and backed up, and to take the storage drive and the few critical papers with us in a waterproof firesafe when we evacuate.

I find it very curious that I struggled for decades to release my sentimental attachment to my stuff and to actually follow through on dedicating the time to make the difficult decisions involved in paring down my possessions, but now that I’m in this situation I find those chains falling free and the decisions becoming much easier.

It’s hard to say whether those decisions have become easier to make since I developed strong allergies to dust and mold. On the one hand, I know that it would be better for my health to get rid of old dusty paperwork and old musty books. On the other hand, I have always loved books, and I resent that it is not my choice to get rid of them – it is largely because my health requires me to do so.

So I find that I am able to part easily with the books that I read once and didn’t feel a need to read again. But the favorite books that I read over and over, or the reference books to which I frequently refer are a different story (see what I did there?). And, no, for me it is not the same to just buy the electronic copy. They are less tangible, and part of the pleasure of reading is lost. I also find it harder to quickly access the highlighted section(s) to which I want to refer, and notes aren’t the same when they’re not written in the margins near the relevant text.

But, by and large, I am surprised how much easier it is to designate things for elimination that I once found too precious to get rid of. Spousal Unit stated recently that, due to the overwhelm of too many possessions for the house size, it feels like we’re living inside a storage shed, rather than a home. Put another way, I’m sick *and* tired of stubbing my toes on all this crap. Besides, it’s just going to mold, rot, rust, or mildew anyway…

So we’ve both embraced the tiny living mindset. Finally. That part’s important too – both. We’ve had several false starts in the past, when one of us wanted to get rid of stuff, and the other one wasn’t onboard (this alternated). And while you can still get rid of your own personal stuff in that scenario, eventually you lose motivation or run out of personal stuff to downsize, and you’re left with all the joint stuff that just sits there taunting you. Since we didn’t want to fight over our stuff, that’s where it would always stall out. [Dealing with this scenario? See this helpful article from Joshua Becker.]

But now we’re both highly motivated to get rid of stuff. In fact, if we ever leave this house (hopefully many years in the future), we don’t plan to take much with us at all. You could say that we’re doing our “moving to an old folks home” downsizing now, several decades early. So far, we’ve done one road trip with the travel trailer we bought last year, and we loved the freedom. I suspect we’d like to get to the point where we have exactly what we need to travel comfortably, and just a few more things at home that make living there more comfortable – nomads with a very small home base is the lifestyle we’re aspiring to.

In addition to the mental and physical freedom that would come along with this tiny, minimalist lifestyle, there are other benefits too. Not only would we not have to worry about what’s being destroyed by a hurricane (since all the critical stuff would either backed up electronically or with us in the trailer) and not have as much to replace after a hurricane, we also will be bringing less into our environment. We care about our oceans and we care about our ecosystem. By consuming less, we’ll be bringing less into our environment that will eventually be disposed of and need a place to go. Less in the landfill. Less to run-off into our oceans. So, by having less and buying less, we will be bringing less pollution into our ecosystem, and we’ll feel good about that too.

After all, we both saw how little we truly needed to live satisfactorily when we were in the armed forces – someplace to sleep, somewhere to store your gear, someway to stay healthy, something to educate and entertain, and somehow to keep in touch with your loved ones. While we mindlessly accumulated (many) more possessions along the way, in the end that’s all we really need.

Crew Dog, One Sick Vet

So we’re getting rid of everything else, and if you want to find us, we’ll either be in/on/under the water or on the road, living our curated right-sized mindful best lives.

I saw a new specialist last week. The appointment didn’t go very well. I went for specific advice, but received only general advice. In fact, it’s the advice many doctors give when they don’t know or don’t care how to help you: diet and exercise.

Don’t get me wrong, diet and exercise are fundamental to good health. But I already know that. That’s not why I drove for hours and spent money to see a specialist.

Of course, the specialist had no way of knowing she was seeing me at my worst – I had a strong allergic reaction to something on my way to the appointment, and was very bloated. All she saw was a technically obese patient with knee problems who should obviously lose weight.

But, as you know, I committed publicly here on May 21st (weeks prior to the appointment) to lose weight. It has been three weeks, and I have lost 6 pounds, which is a very healthy rate of weight loss. According to my home scale, I was not obese when I committed to losing weight. I was just barely still in the overweight category, but not obese. But in the specialist’s office, on her scale and very bloated from an allergic reaction, I was obese. C’est la vie – that’s how it goes.

The specialist was not an allergist, a dietician or a nutritionist, but she felt qualified to tell me that I should try removing dairy, gluten, sugar, and processed foods from my diet for three weeks and then see how I felt. I tried to pin her down on specifics, but she was very disjointed and hopped around a lot. She didn’t actually say it in so many words, but she implied that this would reduce my chronic systemic inflammation.

Again, there is nothing wrong with the advice that she gave me. Except that she has no knowledge of my specific allergies, nor did she ask what types of diets I have already tried under doctors’ supervision. She told me to reintroduce the types of foods (dairy, gluten, etc.) individually after three weeks and see how I felt. I told her I’d already done a very strict elimination diet under the supervision of an allergist and with advice from a nutritionist, and that I did not currently have dairy in my diet – was she advising I reintroduce it? She did not answer my question. I told her that I had already determined that I felt better without grains (except rice) – did she want me to try reintroducing them again anyway? Again, she did not respond.

Telling a patient with known allergies to haphazardly tinker with their diet is irresponsible. And telling a patient to try an elimination and reintroduction of foods without a protocol detailing the most effective way to do so is frustrating for the patient and may lead to inconclusive results.

And yet, her advice was not wholly bad. I do need to lose weight, and inflammation is very bad for one’s body. In fact, research links chronic inflammation to the following diseases: cancer, heart disease, diabetes, arthritis, depression, and Alzheimer’s. And research suggests that certain foods or types of food may cause or reduce inflammation, although this research is still in early stages.

The specialist told me to eat lean meats, Omega 3 fish, fruits, and vegetables. There is plenty of research that supports this advice. It was unclear what her advice was regarding grains, although research supports eating whole grains as part of a healthy diet. She also recommended the meat come from grass-fed animals. According to the Mayo Clinic (my research, not hers), grass-fed beef “may have some heart-health benefits…[but] it’s generally more expensive and there is limited long-term research to definitively prove that grass-fed beef is better for you.” So, does it really matter if you eat grain-fed or grass-fed beef? That’s up to you to decide. One important thing to know is that grain-fed cattle typically are fed corn or soy. If you are allergic to either of these, you might want to avoid grain-fed meat. This really informative Healthline article breaks down the differences between grass-fed and grain-fed beef, including differences in fatty-acid composition and vitamin content, if you’d like to know more. Their conclusion:

Most people are beginning to agree that the most important thing is to eat real food.
Some people like to take this idea a step further and only eat real food that eats real food. After all, grasses and herbs are a more natural diet for cows than corn and soy.
At the end of the day, the choice depends on your preferences and values.

Healthline (see previous link)

After a cooling off period (during which I was thinking “Such a waste of time and money!! She didn’t help me with the problem for which I went there!”), I was able to admit that her advice wasn’t bad, per se. She recommended diet suggestions that are in line with current research (except the gluten-free part – if you’re not celiac or gluten-intolerant, there’s nothing wrong with gluten in your diet, and excluding it might lead to nutritional deficiencies). It sounded like fad advice, initially – “no dairy! no gluten! no sugar! Nothing from a can or bottle.” But it wouldn’t hurt me to try it for three weeks, like she recommended. So I have been. Today is day seven, and I haven’t noticed a difference yet, except that my joints are more loose and painful, which could indicate that the inflammation in my body is decreasing. Inflammation is the body’s way of stabilizing a loose joint and reducing pain caused by rubbing.

The specialist also recommended that I walk 20 minutes minimum per day (in water, if necessary/preferred) and try mat pilates to strengthen my core and build muscle strength. Again, this advice is in line with recommended exercise guidelines for people with my conditions. I have not tried pilates before, so that will be something new to explore. But, like with diet, she didn’t ask what I was already doing.

Along with improving my diet, I had also already committed to more cardiovascular exercise, muscle strengthening, and resumption of physical therapy exercises. Since my baseline health has improved after our move to Florida, I have been walking periodically, as my knees, ankles, and S/I joint pain permits. As a result of seeing the specialist, I have increased the frequency of these walks to every night (except one, so far, when the pain was too much). I have also begun kayaking in Florida. To begin with, I have only been able to kayak on calm days, as battling the wind and waves causes my left hand to go numb and depletes so much energy that it takes days to recover. Baby steps – it’s still better than lying on the couch all day in Colorado, unable to do anything.

I have also resumed the PT exercises my excellent Colorado PT had assigned. I do those daily. After I finish those, I have added foam roller exercises I learned from The Malleable Mom and *her* physical therapist, Jennifer Balducci:

I have found that these foam roller exercises have reduced my neck and lower back pain, help fight my hyperlordosis, and reduce the occurrence of sprained ribs.

Additionally, I have resumed therapeutic yoga, using routines created for me by a restorative/ therapeutic yoga instructor. In my case, too much flexibility is a bad thing, but I do mat-based exercises (laying down) to strengthen my muscles, improve my range of motion, and release stress.

After I have completed this morning routine, I try to end with meditation, if my body isn’t too uncomfortable. Some days the pain or discomfort doesn’t allow me to lie there and relax. I am gradually working my duration back up to at least 15 minutes. I’m averaging about 6 minutes so far. [As I was writing this, I remembered that I like to meditate to music. Time to find the iPod!] I don’t personally use guided meditations – I prefer mindfulness meditation. I just lie on my yoga mat with a yoga bolster under my knees and focus on my breathing and how my body feels. If something hurts (my knee, for example), I focus on that for a while, until it starts to feel better. I try to observe my thoughts and then let them go – much easier to do when I’m listening to music. If When I find my mind wandering, I just re-focus on my breathing and check back in with my body. Not only do I feel better when I meditate every day, I also find I can call on those skills to calm myself when I am in pain or when something makes me upset (like bad drivers!) or anxious (like being in pre-op).

Will I take the specialist’s advice and add mat-pilates or planking to my daily routine? Probably. But only after I’ve established a solid routine (and habit pattern) of exercises I’ve successfully used in the past, which I worked with therapists and other specialists to create for my specific needs.

My takeaways from this appointment:

1. As always, write down exactly what I want to discuss with the doctor and make sure it all gets covered. Didn’t do a very good job of that this time.
2. Non-impact or low-impact core and muscle strengthening exercises are best for me. [Already knew that.]
3. I need to lose weight to relieve stress on my joints. [Already knew that.]
4. Diet is thought to impact systemic inflammation. Learn more about this.
5. No one cares more about your health than you do. A good specialist can fill in pieces of the puzzle for you or point you in a new direction, but you always need to do your own due diligence. [This visit was a harsh reminder.] [This also applies to your finances.]
6. Just like a bad supervisor can motivate you to perform better out of spite (“I’ll show you!”), a dismissive doctor can motivate you to renew your commitment to take better care of yourself.

Has anything changed as a result of my visit to the specialist last week? Yes. I decided to play along with her diet recommendations – no dairy, no gluten, no sugar, no processed foods for three weeks. So far, this has prevented me from eating fast food for convenience sake at least twice in the first week. I have also been much more diligent not to eat potato chips and sweets. [It would have been easier to rationalize eating them without the clear line of “no sugar, no processed foods.”] My GI symptoms have not yet improved, and I still had a major allergic reaction to dinner one night. I have also increased the frequency of my walks to daily, as mentioned above.

The same week I saw this specialist, I also read an interview with Dr. Lisa Mosconi about brain health. She is both a neuroscientist and a certified nutritionist, and I found the article fascinating, so I bought her first book, Brain Food: The Surprising Science of Eating for Cognitive Power. I’ll be devouring the book and anticipate reviewing it here on the blog. While I am not aware of a hereditary disposition toward Alzheimer’s in my family, I am interested in discovering if diet can improve the severe cognitive disfunction (brain fog) that is a symptom of several of my conditions, and that is responsible for my medical withdrawal from grad school.

Although this disappointing specialist’s visit was a good reminder to stick to a Mediterranean diet for good health, I anticipate, based on the article by Dr. Mosconi, that I will reintroduce dark chocolate to my diet once the three weeks are up, because I don’t anticipate that giving up sweets entirely is a sustainable lifestyle for me.

I guess the appointment was a reminder that:

1. Managing chronic illness/disability is difficult.
2. Doctors have a wide range of levels of competence, and just because they’re a specialist doesn’t mean you’ll get good care or good information.
3. You gotta do the work yourself.

As mentioned previously, we have been downsizing for years. In fact, you could argue that we’ve been struggling to downsize ever since we got married.

Spousal Unit & I were a bit older when we got married (our ages averaged to 30), and we each had our own places with plenty of stuff. In fact, we estimate that we gave away enough duplicates after we were married to basically furnish a one-bedroom apartment. But we’ve struggled to get rid of certain things, especially books, papers, photos, and sentimental items.

Due to my poor health, last year we moved to Florida, which means we now live in hurricane evacuation territory. Somehow this has sharpened our focus and strengthened our resolve like nothing else has ever done.

We know that we live with the risk that a hurricane could destroy nearly all that we have. And that has made our perspectives drastically shift. First of all, we acknowledge that everything we own is temporary. I think people tend to ignore that fact in day-to-day life. But we are now holding our possessions with a much lighter grasp.

Secondly, we are much less concerned about buying just the right version of a thing for our home – it may not last even if we buy the deluxe model. We’re no longer buying for durability (as much); we’re buying good enough function, good value, knowing we might have to replace it much sooner than we’d hope. Most importantly, we have an evacuation plan that consists of loading up the most essential things into our vehicles and travel trailer and hitting the road.

Thus, we are beginning to look at everything we own and asking “Would this go with us in an evacuation?” This tends to lead to the follow-on question, “If not, why are we keeping it?”

Now, of course, there are things which would not go with us that still contribute to our quality of life here (spare bedding, outdoor furniture, etc.). We intend to keep those “nice extras,” but we realize that they might be destroyed by a storm and then we would need to decide whether or not to replace them.

Another factor that has influenced us to finally get rid of things is the stark realization that no one will want our things when we’re gone. We don’t have children, so things like yearbooks or photo albums will mean little to anyone once we’re gone. [Not to mention that younger generations would probably rather have digital images than photo albums anyway.] But even if we *had* children, they probably wouldn’t want most of our stuff anyway, as this article in Forbes points out.

Realizing that no one will want our stuff when we’re gone has helped us to release emotional ties to some of our stuff – we’re no longer holding on to “family heirlooms” because “someone might want them someday.”

And, since this house is much smaller than our previous house [in fact, it’s the smallest house either of us has ever owned], we’re tired of trying to make all the stuff fit. We’re tired of tripping over stuff. The clutter is stressing us out. So we’re finally facing all the stuff we’ve been hauling around for decades and ruthlessly eliminating the extraneous.

Of course, we’ve bought a few new things since we arrived. We updated our scuba gear, for example, and bought a fishing kayak. We hope to fine tune our possessions, so that they support our interests without weighing us down.

After all, even though we can haul the essentials with us when we hurricane evac, in the end we can’t take it with us to the afterlife.

And, having dealt with the estates of several of our parents already, we don’t want to burden our loved ones with a bunch of stuff to deal with when we die. To put it in military terms, we need to police our gear, get our affairs in order, and make sure everything is shipshape.

It’s difficult to be fit when you’re chronically ill. Either you’re too tired, or you are in too much pain, or you physically can’t do certain exercises, or you’re allergic to outdoors or indoors or both. You might not be able to afford a gym membership or a pool membership or the cost of exercise equipment.

And then there’s diet. Again with the allergies. And lack of energy, or lack of motivation. Or confusion: “Let’s see, I should try the low histamine diet for this condition, but I also am allergic to these foods, and I can’t eat these other foods because they interact negatively with my medications…” Pretty soon you’re either on the ice cubes and air diet or the “Screw it, I’m just going to eat ALL the Oreos” diet.

I’ve been overweight for a while now, but my weight has fluctuated a bit the past few years. I lost 40 pounds while on an allergy elimination diet, which brought me to the normal weight range for my height. But I was having allergic-type reactions to nearly every food I tried to reintroduce, and was winding up with very few foods I could tolerate. Later, I found out from other chronically ill folks that not being able to successfully reintroduce foods can be a common reaction to an elimination diet *therefore you should weigh the pros and cons carefully and have a thorough discussion with your doctor before attempting an elimination diet.*

“Luckily” for me, I trialled a new medication which caused me to crave junk food and never feel full. I regained a great deal of the weight before I successfully reduced the medication dose to a manageable level at which I did not feel compelled to eat junk all the time. But it broke the reaction cycle.

So I had lost 40 pounds, but I have since regained 30 -35 pounds, placing me back in the overweight range for my height.

I know that losing weight would help with several of my health conditions (such as my arthritic knees). And now that we’re past some of the stress of moving, I am publicly committing to losing weight again.

I currently need to lose a minimum of 30 pounds to be back in my healthy weight range. I have been able to do some walking again in the new location, as long as I respond to what my knees are telling me. Some days I need to slow down, and some days I need to cut the distance short, but some exercise is better than none.

I have also been kayaking a few times. Due to my health conditions, I need to go on days that are not too windy or choppy. But when the conditions are right, I can do it. I also intend to start riding my bicycle – there is a bike path nearby, and the terrain is very flat.

I am currently 30 pounds overweight. In order to lose this weight, I intend to make sure I am drinking enough water, do daily physical therapy exercises to strengthen my muscles (especially my core), stop eating sweets (other than dark chocolate), greatly reduce fried foods, increase my fruit and vegetable intake, and work my way up to at least 30 minutes of (low-impact) aerobic exercise at least 5 days per week.

Everyone is different, and you have to figure out what works for your body. While I am not celiac or gluten-intolerant, I appear to have fewer allergic-type reactions when I follow a grain-free diet such as Paleo or South Beach, so I will also be eliminating grains from my diet (except rice, which I seem to tolerate). And I’ll be reviewing the information we gained from the BBC series, “What’s the right diet for you?” Like Dave, I’ll be looking to transition to a high protein, low glycemic index diet.

Also, I have known for many years that all-or-nothing works better for me than trying to simply reduce quantities. In other words, I’m an abstainer, not a moderator. This is why I’ll be very specifically avoiding all sweets except dark chocolate. “All sweets” is very concrete and doesn’t allow cheating or making willpower an issue. But allowing dark chocolate will keep me from going insane or falling off the wagon.

Additionally, I know that I tend to stress eat, so I will be watching for that and attempting to deal with my stress by exercising or meditating, rather than eating.

Furthermore, I tend to not pay attention to my hunger signals until I’m hangry, and then I tend to choose high-energy, high-calorie foods like potato chips or candy bars to quell the hunger quickly. So it will be important for me to plan meals in advance and know what healthy snack options I have available, and to eat before I get hangry. IOW, eat at regular intervals rather than waiting until I’m ravenous. Drinking plenty of water will also help manage this.

Of course, it will also be important to continue to take my medications and to pursue diagnoses and treatment for my health conditions so that my baseline health is stable enough to allow me to have the physical energy and mental capacity to carry out this plan.

Does anyone want to be my wingman/battle buddy this year while I lose weight and get healthier? We all know that accountability helps us stay on track.

I plan to talk about this a lot more here, but being chronically ill and disabled led to me taking drastic action in an attempt to have better quality of life. So far, it has been hella frustrating and difficult.

Although we have tried various times over the years to downsize (Spousal Unit and I never seemed to be on the same page at the same time with this), we still wound up moving entirely too much superfluous stuff to Florida. Given that a) this house is much, much smaller than our house in the Rockies; and b) this house also needs significant renovation, the result has been that we have mounds of stuff that has nowhere to go and those mounds keep getting shifted from place to place as we need access to the spots where the mounds have accumulated.

To me, right now, our entire life feels like the chaos section of this bookstore:

I am sure it will get better – eventually. Right now, however, I am wishing that we had been able to get rid of much more *before* we packed and moved thousands of miles.

The interesting thing, psychologically speaking, has been the shift in our attitudes once we moved to a radically smaller house and transitioned to a climate where things mold, rot, rust, and otherwise decay so much more quickly. Sentimental attachments have all but disappeared. The “but we might need this someday” fear has been overcome by the realization that, in this climate, by the time we’d “someday” need it, it’d probably be decayed beyond usefulness anyway.

We are now confronted with the stark reality that a) we have too much useless stuff; b) no one is likely to want our stuff once we’re gone; and c) if we have to stub our toes on it all the time, we don’t want it either!

My final hurdle is that I am allergic to mold and dust, which makes it very difficult for me to go through all the old papers, pictures, and books and decide which things I want to keep. And yet, I’m afraid to just chuck it all, because some of these things do still have value for me (sentimental and otherwise).

However, many things which have been hauled unquestioned literally across the globe (across oceans and back) are now being jettisoned.

Because my quality of life depends on a healthy environment and removal of stress, and because I am no longer capable of physically maintaining so many possessions, I am letting go of things (like my books) which I clung to for so long. Spousal Unit and I joke that it’s the same kind of survival minimalism that the pioneers experienced when crossing the Great Plains – “There goes the piano!” “The oxen can’t carry the load any more – say goodbye to the heirloom grandfather clock!” Hard choices are being made. But, under the circumstances, they don’t seem as difficult as they used to. The ultimate choice is survival.

For many of us, daily medication makes our lives more tolerable – or simply possible. And yet, it is so tempting when they are working and you are feeling pretty good to wonder if the meds are working or whether you even need them anymore. This is probably one of the most frustrating things for healthcare providers – to have a patient who is being helped by their meds suddenly stop taking them.

In case you are wondering, I have never willingly done that. But, as you know, I am currently without Botox due to the complications which have arisen from transitioning my healthcare to Florida. It is now looking like I will probably receive my next Botox injections one quarter late. In other words, instead of receiving my injections at the recommended 12-week interval, I will likely receive my next injections 24 weeks after my previous ones, thus missing one entire quarter. Since Botox can take a while to build up in one’s system, and I will have missed a maintaining dose, I don’t know how long it will take for it to return to the levels/effects I was experiencing previously.

As Spousal Unit has pointed out, there *has* been one benefit of this forced discontinuation of my medication – it has demonstrated that Botox was, in fact, reducing my migraine symptoms and improving my quality of life.

Botox has been clinically proven to reduce frequency of migraines for (some) people with chronic intractable migraines. I have been very, very fortunate that Botox *has* reduced the frequency of my migraines! Prior to Botox, I had tried and failed many, many other possible migraine treatment medications. NOTHING had worked to reduce the frequency or the pain of my migraines – until Botox.

But I had begun to wonder… The first year that I received Botox, I could tell when it was wearing off – my symptoms and my headaches would return two-to-three weeks before the end of the quarter.

Wow, I just re-read that post, and I had forgotten how bad it used to be! Because, at some point after the first year of treatment, this stopped happening. At some point, I stopped feeling that the Botox had worn off. I stopped being able to raise my right eyebrow like Mr. Spock – ever. I stopped having to block off “Botox-has-worn-off-so-migraine-symptoms-will-incapacitate-me” weeks on my calendar. Because Botox was controlling my symptoms full-time, with no gaps.

I never, ever missed a Botox appointment, but I did start to wonder how much it was really helping me. That’s the tricky thing about human beings – we’re not really rational actors, even when we like to pretend we are. So, despite all evidence to the contrary, I started wondering if Botox was really having much of an effect. Perhaps I was having fewer migraines because I had changed my diet? Perhaps it was due to other new medications, or the new location?

Well, now I know. Botox *was* helping – significantly. I am now approximately 4 weeks late for my Botox injections. During that four weeks, I have been experiencing symptoms such as light sensitivity, noise sensitivity, fragrance sensitivity, dizziness, lightheadedness, and severe brain fog (cognitive dysfunction). Since I receive Botox injections in my trapeziuses too, those muscles tensed up again without the Botox injections, and now several of my ribs have subluxed and my neck has become painfully misaligned. As you can imagine, this is incredibly painful. I am spending most of my day every day with a heating pad on these areas, and sleeping is quite difficult. Parathesia has also returned, with strange tingling and/or numbness (for me, often at the tip of my nose).

At four weeks past when I should have received treatment, I have not yet had a scintillating scotoma or a trigeminal migraine. While I don’t mind the scotomas, I am grateful that I have not had a blindingly painful headache…yet. I’ll keep you posted as the interval wears on until my next appointment.

So what have I learned? Botox works for me, and I give praise to the merciful Lord for that! Also, I still need Botox. The reason my symptoms had lessened or disappeared is because the medication was working. I will never question that again. [Note to self: in the future, if I forget and have similar questions, reference these blog posts on Botox.]

More than that (as important as that is), I have learned that it is very common for people to discontinue taking prescribed medications without consulting their healthcare providers. For a good overview of some of the reasons people stop taking prescribed medications, see here and here. A significant number of patients stop taking medications or decrease their doses because they can’t afford to fill the prescription as written.

If you are having difficulty affording your medication, please talk to your doctor *and* pharmacist – they may be able to help. A less-expensive generic *may* help just as well (this is *not* true for every patient). Or you may be able to obtain some free samples or qualify for a drug assistance program.

Please DO NOT stop taking your medications without talking to your healthcare provider! There could be serious consequences for your health and safety.

One Sick Vet

There was a time when I tried a medication for my migraines (at my neurologist’s suggestion) that caused me to be clinically depressed. I lost a year of my life to that drug-induced depression, meaning that I laid on the couch and did nothing for an entire year. My family was very concerned, but my neurologist kept insisting that I “just give it more time” and writing more prescriptions to counteract the (multiple) side effects. Even then, I did not discontinue taking that medication without consulting a doctor (particularly because I knew that that medication could *induce seizures* if stopped cold turkey).

On a day when I had enough mental capacity and motivation (or desperation?), I called the base healthcare line. I told them of the problems I was having, and I played the only card I had left to get someone to take my problem seriously (and I was telling the truth) – I told them that I needed professional help to discontinue taking the medication (what doctors call “titrating off,” or gradually reducing the dose) because I was suicidal. They gave me an appointment that day, and that person referred me to a psychologist. The psychologist saw me for several sessions, but believed me that the medication was causing the side effects (including the depression) and also referred me right away to a psychiatrist, who could guide me in gradually reducing my doses until I was safely off the medication. Once the medication had left my system I was no longer clinically depressed. And I did not have any seizures, because we gradually and safely reduced the doses. However, to this day I remain angry that I lost a year of my life because doctors would not listen to me and would not believe me. Thank God I did not lose my life altogether.

TL;DR: There’s a “right way” and a “wrong way” to discontinue taking medications. ALWAYS talk to a healthcare professional before discontinuing medications. Also, paradoxically, between 16% and 25% of people discontinue taking medications because they feel better, so they think they don’t need them anymore. But, as in my case, the reason they feel better, most likely, is *because* the medication is working. Keeping a medical journal (or a health blog) can be a useful way to track symptoms and treatments, and to evaluate whether the treatments are effective (and to remind yourself of their effectiveness if that’s the case). Personally, I have both a medical journal *and* a health blog. 😉

How about you? Have you ever discontinued a medication? If so, why did you stop? Did you talk to your doctor or pharmacist first?

I am now three weeks past when I should have received the next set of Botox injections for my chronic, intractable migraines. The standard treatment protocol is every 12 weeks, but I have been unable to get the VA to continue my treatment since I moved.

Last Friday I was feeling particularly unwell. The brain fog was severe, and along with that came apathy and despair. I knew that something had to be done. With the help of Spousal Unit (I was in no condition to drive safely), I went to the local VA clinic and staged a sort of sit-in. I told the receptionist that I needed Botox and I wasn’t leaving the clinic without a referral to the VA hospital for Botox. (Botox shots are not administered at my clinic, so I must travel to the nearest VA hospital.)

The receptionist told me to have a seat, and warned me I could be there all afternoon. I said I didn’t care if it took all day, I wasn’t leaving until I got what I needed, and I went and had a seat.

Of course my light sensitivity has returned, so I sat in the darkest part of the waiting room with my hat and dark sunglasses on, away from all the other patients and the magazines (sound sensitivity, fragrance sensitivity).

After a while, Spousal Unit got a little impatient with waiting and suggested we also try to follow up with the Veterans Experience Office.

We had been at the nearest VA hospital a few weeks ago and had attempted to resolve the Botox situation then, and we were referred to the Veterans Experience Office (which is kind-of like a patient advocate program). Unfortunately, the representative had asked me to go home and send her an email detailing my experience with the provider who had refused to give me the referral I needed in order to continue receiving Botox injections after I moved.

I say this is unfortunate because one of my worst symptoms (which also led to my having to withdraw from graduate school) is brain fog, aka cognitive dysfunction. My brain fog has increased since the lapse in my Botox treatment, and I have been unable to think clearly enough to write a thorough and coherent email regarding the situation. Also, the brain fog led to me misplacing the scrap of paper with the Veterans Experience Office email on it that the rep had given me.

Apparently no case file had been started either, despite my visit to their office. However, the rep that Spousal Unit reached via phone while I was staging my sit-in was very helpful. She started a case file and took the details down over the phone. She told me that someone would respond within a week.

Meanwhile, the clinic receptionist had reached my PCP (primary care provider), who was not in the clinic that day. I was offered an appointment today, the first duty day following my request, which I accepted.

After we concluded our call with the Veterans Experience Office, I decided that I could not make any more progress on Friday, so I ended my sit-in at the VA clinic.

Today I returned for my scheduled appointment with my PCP. I do not know whether he is aware that I have filed a complaint with the Veterans Experience Office, but the receptionist at the clinic may have shared with him my statement on Friday that I was there because my PCP had refused to give me a referral to the VA hospital for Botox as I had requested for continuity of care.

Either way, my PCP entered the room saying that he had heard I was saying that he had refused to write a needed referral and he was sure he’d never done any such thing. He wasn’t confrontational – instead, he used the “gaslighting” technique. However, I remained firm, while also trying not to be confrontational, in the hopes that I might get the needed referral.

He went on and on about how difficult to navigate the bureaucracy would be, and that the hospital is very inconveniently far away, but I remained firm in insisting that I wanted the referral. Eventually he acquiesced and submitted a referral, although he said he wasn’t sure if he was referring me to the correct department of the hospital, and that he didn’t know if the referral would be effective.

However, everyone with whom I had previously spoken at the VA hospital had said that they couldn’t help me without a referral from my PCP, so at least I have finally cleared that hurdle.

I do not know how much longer I will have to wait before I can get approval from the local VA hospital to simply continue the care plan I was already following with the VA at my previous location, i.e., receiving the Botox injections. It seems to me that such a transfer of in-system care should not be nearly this difficult.

Meanwhile, my health will continue to deteriorate until I receive the next set of injections, and it may take more than one set of injections (which are only given at 12 week intervals) before I regain the level of health I had prior to the interruption in my medications. Like many other medications, full effects are only felt once a certain level of medication has built up in the patient’s system, and I don’t know how long it may take to reach the level of medication that had built up in my system prior to the interruption.

I am frustrated and angry that this has taken place despite my best efforts to receive continuity of care and prevent any disruption of treatment.

“Patients should not have to wage war to receive sufficient healthcare.”

One Sick Vet

I say wage war because it is never simply one battle. The chronically ill and disabled find themselves fighting skirmish after skirmish, battle after battle, merely to stay alive. To get the medications or treatments they need prescribed, authorized, approved, and paid for. To be able to continue the medications that have been working for them. To get the diagnostic test(s) that will pinpoint their illness or injury and lead to the right course of treatment.

But you don’t have to take my word for it – ask any one you know who is chronically ill and/or disabled. Read blogs or tweets written by others in these communities, such as The Bloggess’ recurring battles with her HMO to simply continue her medications – especially the ones that allow her to function, earn a living, and stay mobile.

And then consider that these are the struggles of people who actually *have* healthcare. There are others in even worse situations, who need care but have no way to access or pay for it.

And those of us who have illnesses or disabilities that affect our cognitive abilities or who have conditions that include overwhelming fatigue* or depression have to advocate for ourselves and fight for care despite being disadvantaged by our conditions. Because if we don’t, who will?

*Unfamiliar with chronic fatigue? Chronically ill blogger Lindsay describes it like this: “And suddenly, I’m back to needing multiple naps per day and lying down as soon as I get home from work. I am always exhausted. If you’re not familiar with the difference between being tired and being fatigued, I describe it like this: tired means I would fall asleep if I went into the bedroom to lie down; fatigue means I’m not sure I can walk to the bedroom without falling down.“

I say again: Patients should not have to wage war to receive sufficient healthcare. There should be room for more in someone’s life than just their fight for survival. We all deserve better.

My experience with the VA [U.S. Department of Veterans Affairs] has been very mixed. I have received excellent care, negligent care, and life-threatening care – it has pretty much run the full spectrum.

Transitioning my VA healthcare from the Rockies to Florida has been very difficult.

One Sick Vet

Even though I managed to find out (in a very roundabout manner) that the VA has transition managers, and spoke to one about my move, transitioning my healthcare did not go smoothly.

My biggest problem has been getting my medications refilled. Apparently, when I saw my primary care provider in the Rockies for my annual exam, she forgot to renew my medications in the computer, which led to them “falling out” of the system. Thus, I was unable to order refills online through the VA portal. We made sure I had enough medications to last through the move to Florida, but when I attempted to get refills in Florida the trouble began.

I had arranged to see my new VA provider a few weeks after arriving at my new location. I will have a lot more to say about that particular provider later.

I explained that I had been receiving Botox from the VA in my previous location and needed to coordinate to continue to receive Botox in Florida. My new provider was unwilling to write the referral I needed, and suggested I try to receive that care from Tricare, through our military retirement benefits, rather than continuing to receive it from the VA. This would have entailed starting over from scratch to receive this treatment from a completely different healthcare system. Meanwhile, the clock was ticking, because I receive these injections on the standard 12-week interval.

My new VA provider also refused to renew any of my allergy medications, even though I had brought the bottles with me, which clearly showed they had been filled through the VA, as well as medication type, dose, etc. Because the prescriptions were no longer in the computer, he would not renew them.

I left that appointment very frustrated because I had received none of the care that I had requested – and none of it was a request for anything exotic or new, I had only sought to continue my existing course of treatment!

Meanwhile, I was also having trouble on the Tricare side of things getting other prescriptions refilled.

Thinking that perhaps I had misunderstood something due to brain fog, I returned to my local VA clinic and explained that I had completely run out of several of my medications and desperately needed refills. The receptionist relayed my request to the doctor, who responded, “I am not comfortable treating this patient’s allergies.” I was not given even an emergency refill dose to be able to continue my medications as prescribed.

What the VA provider *was* willing to do was to give me a referral to an allergist at the VA hospital. The referral was processed promptly, but the first available appointment was six weeks away (which is not a bad wait at all for a specialist, but is a long time to be without prescription medications.)

Last week I finally had my appointment with the VA allergist, and it went even better than I dared hope. Not only did the allergist agree that I should remain on my treatment plan, and agree to renew all of the prescriptions that my PCP had refused to renew, she also suggested two additional medications, both of which I am open to considering.

[It’s very rare that I am willing to try new meds, since any change runs the risk of upsetting the delicate balance that keeps my health somewhat stable. But her recommendations were really good. Even so, I only ever change one factor at a time, so that I can try to control variables and try to isolate its effect.]

So, after months of struggle, I finally have all of my medications again…until tomorrow, when I am due for my quarterly Botox injections to prevent migraines. I am still fighting that battle, trying to get the shots authorized in Florida, and unable to return to the Rockies to continue my treatment there. So I will be missing those injections, for the first time in years, as I have been unable to get that sorted out yet.

I will eventually prevail, and receive the care I need, but at what cost? Missing medication doses and undue stress are very bad for anyone, let alone someone who is chronically ill. I never realized that after fighting *for* my country, I’d have to fight *with* my country to get reasonable care for my health.

Instead of fighting for my ideals, now I’m fighting for my life.

I don’t know why there’s such a stigma against mental illnesses. All I know is that problems don’t get better by being hidden or ignored. And I believe that no one should be shamed for saying “I have a problem and I need help.”

But that’s exactly what happens in our society. And often the very people who are supposed to provide help don’t understand either. In this article, the author shares an experience when a whole session of mental health providers agreed that one symptom of mental illness was an inability to function in society. Since she, herself, has mental illness, she corrected them and asserted that some people are able to function in society despite having mental illnesses and mental health providers should shed themselves of the harmful assumption that anyone who is able to function in society cannot possibly be mentally ill.

Why am I talking about this today? Because I want to amplify the author’s voice. And because this has affected me personally.

As part of my VA disability examination process, I stated (truthfully) that I have cognitive disability. Whether it’s a symptom of chronic migraines or one of the illnesses I have subsequently been diagnosed with is difficult to determine. Regardless of its cause, it is something I struggle with.

On a bad day I type dyslexically, mixing up the order in which my fingers hit the keys and horribly misspelling anything I try to type. I forget words – I know what I want to say, but I can’t remember the word that means what I want to say. On a very bad day I throw a noun and a verb at Spousal Unit and hope Spousal Unit can figure out the sentence that should exist around them. I also have trouble holding on to a train of thought long enough to be able to get it out of my mouth.

On a very bad day I can’t read, because I can’t focus my attention and I can’t follow a train of thought. If I try to read on those days I just read the same sentence over and over again, trying to make sense of it and to remember it long enough to tie it together with the sentence that follows or precedes it. It feels like my head is full of a very thick fog, and thinking is as difficult as seeing through such a thick fog would be.

When this happens, I am aware that my capacities are greatly diminished. But there’s nothing I can do about it.

The best I can do on those days is as little as possible. I try not to leave the house and not to make any decisions, because I often create a big mess since I’m not thinking clearly. For example, I had a bad day but I was nearly out of an important medication, so I went into town (someone else was driving) to try to get my prescription refilled. I’ll save you the longer version of the story and just say that when I was done I still had no refill, and Spousal Unit had to make several phone calls to undo all the damage I’d done trying to get the refill from the wrong provider and to simply order the refill from the VA’s automated phone service.

These cognitive problems impact my life in a significant way. So imagine my surprise when the VA psychologist who evaluated me for my disability determination started with the question, “It says here you’re in a doctoral program. Is this still accurate?” I told him it was. He replied, “Then there can’t be anything cognitively wrong with you. You wouldn’t be able to accomplish the work in a doctoral program if there were anything wrong with you.” I tried to educate him as to my actual circumstances, but it was apparent that he’d made up his mind before I even arrived. As a result of his evaluation, I received no disability from the VA for cognitive dysfunction, and no assistance of any kind.

(Long-time readers will know that I have recently had to medically withdraw from my doctoral program due to cognitive dysfunction, after years of inability to accomplish my dissertation.) My university gave me no assistance either, despite me asking for accommodations at the university’s ADA office.

There’s a discussion in the chronically ill community about whether it’s more difficult to live with a seen disability or an unseen disability. It’s not a contest – it’s what academics would call a thought problem or a hypothetical situation. I think living with any disability is damn difficult. But I will also say that living with a mental disability is particularly challenging because it’s very difficult to advocate for yourself when your brain isn’t working very well.

When someone has a seen disability, they have to live with the (often thoughtless) reactions of society to their disability. When someone has an unseen illness, they can visibly “pass” as healthy, but they are frequently accused of faking their disability, and given no accommodations. Either way, they’re submitted to ableist discrimination.

One Sick Vet

In the case of mental disability, it is both an unseen disability *and* a social stigma, which makes it incredibly difficult to ask for help and to get help.

As one example of a reason someone would not ask for help, it is illegal to ask about health conditions on a job application, yet I have encountered multiple job applications that ask whether the applicant has a history of mental illness.

Yet if someone disregards the potential societal and employment ramifications of asking for help and goes to a mental health provider, they run good odds of encountering an unsympathetic provider such as the VA psychologist I encountered. Damned if you do, and damned if you don’t.

And frankly, the only reason I’m willing to be so open about my cognitive dysfunction is because I don’t think I’ll ever be able to work again, so I’m no longer concerned that it might affect my future chances of getting a job.

The system is broken, and the chronically ill and the mentally dysfunctional are some of the most at risk or least cared for. That is why I’m adding my voice to the voices of others saying that the chronically ill aren’t faking, and the mentally dysfunctional should not be shamed or ignored.

I am incredibly grateful for the few who are willing to share their experiences with chronic illness and/or mental/physical disabilities with the world and to advocate for the chronically ill/mentally ill/disabled, whether the cause of their disability is genetic or traumatic (such as TBIs). And I am honored to join their ranks.

Please remember: Just because you don’t see a disability doesn’t mean it doesn’t exist. And even if an individual seems to be functioning, even highly-functioning, in society, that doesn’t mean they are not possibly coping with one or more disabilities, even mental disabilities. You know what they say about assuming…

The most important thing that I could say is this: If someone asks for help, believe them. Help them if you’re qualified, or refer them to someone who is if you’re not.

Sometimes brains break, just like other parts of the body do, and there should be no shame in admitting that your brain is broken and that you need help.