Category: Uncategorized

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.

Full disclosure: Neti Pot is the name of one type of device used for a nasal saline rinse.  I haven’t actually tried this type of device.  Since I didn’t think I was coordinated enough to use an actual neti pot, I use the squeeze bottle style device.

I heard a lot of buzz about using neti pots, but I was skeptical. Two things convinced me to try them: 1) my good-ole-boy, no-nonsense, former law-enforcement-officer (LEO) friend said he’d been doing it for years and it had made a big difference for him [although he wasn’t using an actual neti pot – he was doing a redneck-style nasal rinse]; 2) several doctors recommended that I try it, and then the VA prescribed me a starter kit.

The starter kit consisted of a squeeze bottle, packets of saline mix, and instructions.

But I still wanted more information, so I googled “how to use a neti pot,” and watched several videos. See the end of this article for one such video.

It is not difficult to do a saline rinse (although I haven’t tried fumbling with a slippery-when-wet ceramic neti pot). However, after having done saline rinses for several years now, I have found various ways to screw it up, which I list below. In my defense, I usually do a saline rinse when I have been exposed to allergens and am having an allergic reaction which, in my case, typically includes “brain fog” (cognitive impairment). Thus, I have inadvertently discovered various ways to screw up the process.

Mistakes I have made:

• Not warming up the water (Cold! So cold! Shocks the sinuses)
• Warming up the water too much (Hot! Ouch!)
• Forgetting to add the saline (Burning sensation, very unpleasant)
• Adding two packets to one dose of water (Different burning sensation, very unpleasant – recommend greater attention to detail) [If you make this mistake, shake up the solution well then pour out half into a clean container and add the right amount of water to the bottle and the container to make each 8 ounces – this should give you the right concentration.]
• Not shaking up the bottle to dissolve and mix in the saline (burns when you reach a high saline portion of the water)
• Not screwing down the nozzle tight enough (water leaks out)
• Screwing nozzle too tight (bottle can’t equalize the pressure and stays collapsed, making it very difficult to get the remainder of the water out)
• Tilting head too far back (water runs down the back of your throat)
• Rinsing both nostrils with only one 8 ounce dose (I didn’t realize at first that you are supposed to use a full 8-ounce dose on each side, so you do the full bottle on one side and then repeat the process for the other side.)

Mistakes I have NOT made:

• Forgetting or neglecting to thoroughly clean and dry the bottle & nozzle (mold can form if the device is not properly cleaned and dried – no one wants to spray mold into their sinuses)
• Just using regular salt (commercial manufacturers add baking soda to get the right pH)
• Just using regular tap water. See Warning below.

How I do a nasal saline rinse:

• I gather my supplies (squeeze bottle and nozzle, two saline packs, filtered water, measuring cup, tissues).
• I heat 2 cups (16 ounces; ~500 ml) of water in a Pyrex measuring cup in the microwave for between 30-45 seconds (until it is warm but not hot). I use a Pyrex measuring cup because it is microwave-safe, has a small lip for pouring liquids, and is glass, not plastic. Heating plastics in the microwave can release harmful chemicals.
• I take the warm water to the bathroom sink, where I pour half of it (8 ounces; ~250 ml) into the nasal rinse squeeze bottle. (The bottle is soft plastic. It could be releasing chemicals for all I know, but I have decided I’d rather risk that than risk growing mold inside a neti pot where I can’t see it, or risk dropping a ceramic neti pot. You do you. Also, manufacturers recommend the bottle be replaced every 3 months)
• Next, I add one packet of pre-mixed saline to the squeeze bottle containing the water, screw on the nozzle, and shake vigorously. CAUTION: Place a finger over the hole in the nozzle before shaking.
• Once the saline is well mixed, I lean over the sink, tilt my head sideways and down, open my mouth, insert the nozzle tip into a nostril, and begin to gently squeeze the bottle. [Your head should be tilted to the side, and whichever nostril you are using first should be on the high side.] Water should run through your sinuses and exit the *other* nostril [the nostril on the low side]. Some people complain that the water runs down the back of their throats and they find that very unpleasant. If that happens to you, remember to keep your mouth open while using whatever nasal saline rinse device you are using (to help equalize pressure), and keep your head tilted down over the sink. Breathe through your mouth.
• You will probably need to remove the nozzle from your nostril at least once to allow the pressure in the bottle to equalize so that you can continue to squeeze the contents out of the bottle. Remember to keep your head over the sink during this process or you will drip from your nose onto the countertop or floor. Once the bottle “re-inflates,” tilt your head sideways and down, place the nozzle opening in the high side nostril again and continue until the bottle is as empty as you can get it.
• At this point, I set down the empty bottle, press my thumb against the outside of the nostril through which I’ve been running the saline solution (the high side nostril), press the nostril shut, and blow my nose into the sink. This helps clear the saline solution (and gunk) from my nasal passages.
• I will then take a tissue or two and blow my nose until no m0re water or gunk comes out.
• Then repeat the process on the other side by mixing more solution in the squeeze bottle, etc. and then tilting your head to the *other* side, so that the nostril that was low before is high now, and place the nozzle in the high nostril (so, for example, if you placed the nozzle in your left nostril first, place it in the right nostril now). Repeat all the steps that you did for the first nostril.
• Clean and dry the measuring cup, bottle/neti pot, and nozzle afterward. I store the nozzle separate from the bottle, so that both are able to fully dry and no moisture gets trapped inside.

TIP: Some people prefer to do their nasal saline rinse in the shower, rather than over the sink. If you are concerned about making a big ole mess, you might try that instead.

WARNING: Do not forget to thoroughly rinse the measuring cup, squeeze bottle or neti pot, and nozzle, and to dry them thoroughly after each use. You DO NOT want mold to grow on any of these items.

WARNING: PEOPLE HAVE GOTTEN HORRIBLE INFECTIONS FROM USING TAP WATER to do a nasal saline rinse, because “Tap water generally has small amounts of bacteria, protozoa, and other microorganisms, including amebae. These are fine to swallow because stomach acid kills them, but they should not go into the nasal passages. If they do, they can remain alive and eventually cause serious infections.”  Always use distilled or at least filtered water to do a nasal saline rinse.  (You can read the FDA guidelines here .) This article provides a good overview as well, as does this one.

CAUTION: Do not share a neti pot or squeeze bottle with anyone else. Gross!

If you’re skeptical about the value of nasal saline rinses, you can read more about their utility here:

Neti pots – Ancient Ayurvedic Treatment Validated by Scientific Evidence

I personally do not do a nasal saline rinse every day, although my doctor recommended it, because I read research that indicated that daily use might actually be harmful. Basically, the research said that prolonged daily use could deplete the protective layer of mucus in your nose that helps prevent infections. Instead, I do a nasal saline rinse on an as-needed basis whenever I am exposed to an airborne allergen such as dust, mold, pollen, or fragrances, or when I have nasal or sinus congestion. Talk with your doctor, do your own research, and decide what is best for you.

More info about nasal saline rinses here.

TL;DR: Here’s a video on how to use an actual neti pot:

Feel free to share your experiences of using a nasal saline rinse in the comment section.

After having bought a new house, moved cross-country, hosted several houseguests (with the entertaining and eating out that went along with that), and spent too much on Christmas, I was inspired by Mrs. Frugalwoods to take her über frugal challenge in January.

I didn’t actually sign up for her daily emails, although I’m sure some people would find them very helpful; I just took her blog post as inspiration to go on a money diet for the month of January. Plus, it was nice to know that I wasn’t the only one tightening my money belt this month.

One of the ways I reduced spending this month was by eating down the contents of my pantry. Which means that my dinner one night was rice noodles with coconut milk. Not a terribly exciting meal, but it felt good to know that I was using up some food that has been languishing at the back of my pantry.

Being on a money fast helped me to break the habit of overspending that came from the move. When I was tempted to impulse spend, I thought about the ledger I kept this month. The challenge of trying to keep the row of zeros going helped me overcome the temptation to buy a gadget or a fast food meal. I liked seeing how many days in a row I could spend $0.00. [Of course, I’m only talking about discretionary income. But I am looking at my “fixed” expenses now too, to see if there’s any way I can reduce any of them.]

Just like with food, reducing spending will only be successful if it becomes a lifestyle change, rather than a restricted diet that is so severe that it is unsustainable long-term. After about two weeks on the spending diet, I started to feel a bit restricted by it. Although I had overcome the habit of buying things on Amazon when I felt like it, and I no longer went to fast food as a default because it was easier than finding cookware in my still-not-fully-unpacked kitchen, at two weeks into the diet I started to feel a bit deprived. I decided that if reducing my spending was going to become a lifestyle, I needed to actually spend on necessities, not just play games and wait until the month was over to buy things I needed. So I went ahead and bought dental floss.

It still felt a bit restrictive, and for at least a week I was really looking forward to buying more things when the month was over. I really wanted to buy some e-books, so I tried to find frugal ways to get what I wanted. I went to the library and got a library card, and got information on how to get e-books from the library. But when I got home and tried to download the app, I found out it only worked on Microsoft or iPads/iphones/ipods, and I don’t have any of those. :’-(

So how did I do with the über frugal challenge? Good and bad.

Good: At the end of the month, I had spent $0.00 on 23 of 31 days. The longest I was able to go without spending any money was 6 consecutive days, and I was able to do that twice. [Since I buy lots of perishable groceries (fresh fruits & vegetables), I had to buy groceries once a week.]

Bad: Despite trying to spend as little as possible this month, I still wound up spending over $950. :-O

Where did it all go? It breaks down as follows:

Total Spent: $960.61

Groceries: $453.42

Medications: $22

Gas: $43.33

Dental floss: $9.15

Holiday travel-related expenses: $61.25 [Getting home from Christmas travels]

Gifts: $63.04

Apple slicer: $9.42

Professional expenses: $299

You could argue that professional expenses shouldn’t be included in discretionary income, but I decided to include every penny I spent on anything that wasn’t a fixed bill.

Meanwhile, I recognize that I was privileged to be on a money fast because I wanted to reduce my discretionary spending and not because I was one of the federal government employees who were without paychecks, or otherwise in a dire financial situation. I acknowledge that many people count their pennies and tighten their belts out of sheer necessity. Then again, you could argue that my money fast was necessary, since I have become disabled and chronically ill and may never be able to work again.

Taking the über frugal challenge enabled me to break the habit of spending money for convenience/stress-relief, which is something I wind up doing every time I move. It also helped me to break the holiday spending mindset that I seem to succumb to every Christmas.

It also made reconciling my credit card statement super easy this month. Since I was aware of every purchase/expense, I just had to quickly scan the statement and confirm that there were no unauthorized purchases.

And even though I thought during week three that I couldn’t wait until the month was over to relax the restrictions and spend a little bit more, a funny thing happened. When the über frugal month ended, I was disappointed that I had spent so much despite trying so hard to be frugal. But I also enjoyed knowing exactly where my money went. So I decided to keep the challenge going.

Yup, you heard that right – I’m extending my frugal challenge through February.

Even though I was initially disappointed when I totaled up my discretionary spending, the über frugal challenge had the following benefits for me:

• It helped me get back to basics (tracking where every penny goes).
• It helped me stop spending mindlessly.
• It helped me stop spending for convenience.
• It helped me break the Christmas spending mindset.
• It made me start thinking about my “fixed” expenses and ways to reduce them.
• I saved money.

Yes, I did save money, despite spending such a ridiculous amount. I was feeling down about how much I’d spent, despite my best efforts, when I was reminded (while reading a post at Get Rich Slowly) that we spend less than we earn so that we can invest the difference. Right! I had been so focused on how much I spent that I forgot why I was trying to reduce my spending. So I went back and figured out how much I had not spent in January, and I was able to transfer my savings to the account where we’re saving money to pay for the repairs our new house needs. Success!

Even though she doesn’t know I was playing along at home, I’d like to thank Liz Thames, aka Mrs. Frugalwoods, for coming up with the über frugal challenge. I think I may do it every January to help reset my spending attitude after the holidays.

What do you think of the über frugal challenge? Is it something you might try?