Fighting Back Against Crohn's Disease

Dear Crohn’s disease,

You have the worst reputation among 3 million Americans from all walks of life who are affected by your “rein of terror.” Many patients with inflammatory bowel disease (IBD) have to deal with nausea, fever, constipation, the big “D,” and abdominal pain. There is also inflammation involved within different parts of the GI tract as well as abscesses or fistulas, which can make a person extremely ill if it’s not taken care of.

There are ways to pinpoint where you are hiding within the body. CT scans, MRIs, endoscopies, sigmoidoscopies and colonoscopies are some of the ways that you can be “tracked” down before decisions are made on how to best treat your manifestations.

Most gastroenterologists will try a variety of medications to keep you from further harming our GI systems. This way you’ll never wreak havoc for a very long time. Anti-inflammatory drugs, immune suppressants, or newer advancements, known as biologics, are always considered the first line of defense.  Not everyone responds the same way to treatments since some can develop allergic reactions or are prone to getting an infection.

In case you didn’t know, the CCFA (Crohn’s and Colitis Foundation of America) chapters have dedicated “warriors” whose goal is to raise awareness about inflammatory bowel disease and have fundraisers within the community so the money goes towards research to develop a permanent cure.

So you see,  my fellow “crohnies” and I will not give in to you.

We are the champions, my friend, and we’ll keep on fighting…….. till the end.”

4 Things to Keep in Your Schizoaffective Disorder Self-Care Kit

Life with schizoaffective disorder can be rough sometimes. Between the symptoms of psychosis and the mood symptoms, things can get chaotic. That’s why it’s important that you take time to take care of yourself. Getting enough sleep, eating well, and exercise are always helpful, but here are a few more things to consider adding to your schizoaffective disorder self-care kit.

1. A weighted blanket or stuffed animal.

Whether you’re hiding from symptoms that are bombarding you, trying to slow your mind down, or organize your tangled thoughts, weighted blankets can be a great tool. They can help soothe anxiety and let you escape from the world for a while. They come in multiple different weights and styles. The rule of thumb is to choose a blanket that’s 10 percent of your body weight, but do what feels most comfortable for you. The downside is they can get expensive, but if the cost is too high, having a pet, or even another human, lean or lie on top of you can create a similar effect.

No matter what your age, a weighted stuffed animal can also provide some much needed comfort. Some have arms to wrap around you like a hug, and others can be heated up in the microwave, often accompanied by built-in aromatherapy. Many weighted stuffed animals can easily ride along in the car or accompany you to appointments. If you’re not comfortable taking your stuffed pal out in public, you can still enjoy the anxiety-reducing effects at home. Weighted stuffed animals come in a wide range of weights, features, sizes, and adorable creatures at a variety of price points.

2. Music is a staple in my self-care kit.

It can help me drown out my auditory hallucinations, soothe me, and even make me feel less alone. I’ve got playlists for all my different needs and moods. The only thing to keep in mind is the impact it can have on your emotions. As much as I love to listen to music that reflects whatever brokenness I’m feeling, it often only makes things worse if I’m already on that downward spiral. Even if it feels weird at first, I find putting on upbeat music when I’m down can help lift my mood at least a little bit. Dancing or singing along helps, too! Whether you prefer headphones or blasting a speaker, put on that song that makes you happy and let the music flow.

3. Something to keep in your pocket with a soothing texture, or something you can fidget with.

When mood symptoms send your emotions on highs or lows or both, something that can be really helpful is something you can fidget with or that has a texture that’s calming. It can be anything — a smooth stone, a pocket-sized stuffed animal, a fidget toy, or anything else that helps make your mind and emotions a little less chaotic. Tactile sensory stimulants like these don’t have to cost a lot of money, if any, to be helpful. One of my favorites is a smooth stone a friend found at a beach.

4. Spaces where you feel safe.

Some days, symptoms can make being around others stressful. At other times, it’s important to be surrounded by others to fight feelings of isolation. Because of this, having both a quiet safe space to go to when your symptoms are flaring and you need to be alone, as well as a place you can go where you don’t feel alone are vital. In some cases, you may need to create a space for yourself where you feel safe alone.

During my first year with schizoaffective disorder, my room became a dreaded place, but I had no other private place to escape the world. A little rearranging to open and brighten up the space made a huge difference. With fewer shadowy places, I was less paranoid about seeing hallucinations emerge, and my room became a place where I could feel calm. In my current home, I plan on creating a collapsible safe space by keeping the other tools in my self-care kit tucked away where they can easily be brought out to transform a portion of a room into a happy, soothing space when my symptoms or the fear of having symptoms becomes too much for me to handle.

In whatever way you choose to do it, self-care matters. 

Self-care is so important, not just for living life in general, but also when living with distressing symptoms like hallucinations and mood symptoms and the anxiety that may go along with them. Whether you use the ideas on this list or come up with something more your style, I hope your self-care kit helps make life with schizoaffective disorder a little bit easier.

You can follow Katie’s journey on her blog, Not Like the Others.

6 Common Sleep Myths

Sleep disruption is one of those symptoms that often gets pushed aside in stroke recovery. It’s understandable. You’re likely dealing with a lot of changes and getting better sleep is the last thing on your mind. But getting better quality sleep can help you recover.

Continue reading “6 Common Sleep Myths”

Why Do I Have Post Stroke Fatigue?

 This question was asked by me to the Forum and the answers come from my researching Post Stroke Fatigue. I believe you will find this information useful. So here goes:

Dear Me: 

I don’t want to take a nap. I need to take a nap. Why is that so?

Need, Not Want

Dear Need, Not Want:

In the world of acronyms, it’s called PSF, or Post-Stroke Fatigue. PSF is a given post-stroke. So what is the solution? Knowing that you need a nap, there are some suggestions on management. Follow along and track the 1) how 2) who, and 3) what respectively in these 3 recent studies.

The How

In the Chinese Journal of Physical Medicine and Rehabilitation, Yan et al wrote:

Issue: How you breathe makes a difference.

Findings: “Diaphragm training can significantly improve motor function and the daily life of stroke survivors. The mechanism may be related to improved respiratory function and decreased the severity of fatigue.”

Translated from medical jargon, that means you might take shorter naps, or even a 15-minute power nap, if you breathe the correct way. I took an armchair yoga class several times and each time, the instructor went over breathing: a count of 4 breaths in (inhalation), a count of 6 breaths out (exhalations). This breathing exercise is good for other things, like alone time for meditation and frustration moments. I try to do that breathing pattern all the time, and when I forget, I know, so I get right back on track.

The Who

In the Journal of Psychosomatic Research, Cumming et al discovered a couple of things, among others, that might interest you:

Issue: Confirmation of link between FMS (Functional Movement Systems) and disability and depression

Findings: “Post-stroke fatigue was associated with lower limb mobility, while post-stroke depressive symptoms were associated with cognitive performance.”

Findings: “The current results underscore the importance of recognizing fatigue clinically, and the need to understand the underlying pathophysiology. Its importance is also highlighted by a high prevalence and persistence, remaining elevated in one study at 6-year follow-up.” 

The What

In Lenus, The Irish Health RepositoryKhan and Delargy found the following:

Issue: Rehabilitation can be severely affected by PSF

Findings: “Post-stroke fatigue is a frequently reported symptom by stroke survivors undergoing rehabilitation. This cross-sectional observational study was undertaken in a rehabilitation facility to look at its prevalence and relationship with various variables like personal factors, type of stroke, social context, hemispheric involvement on CT scan and mobility status. The results showed that PSF was present in 83% (25 out of 30) of the patients included in the study.”

Predictable, for sure. But when the medical researchers say it, you REALLY believe it. Please show this article to your family and friends if they say something negative like, “Get up already” or “Stop being lazy.” PSF is a real thing.

Brought to you by Strokefocus and one of its associations, Northwest Brain Network

    The Basics of Hemorrhagic Strokes

    Hemorrhagic strokes are the second most common type of stroke. They account for almost 13% of all strokes, according to the American Stroke Association (ASA).

    Typical Causes

    Hemorrhagic strokes are the result of a blood vessel that bursts and bleeds in the brain. This puts increasing pressure on the brain, and cell death can happen within minutes. Let’s look more in-depth at some common causes.

    Uncontrolled High Blood Pressure

    Blood pressure that is not well controlled can have serious consequences. High blood pressure can cause damage and weaken arteries. Weakened arteries in the brain can rupture and lead to a hemorrhagic stroke. This is why blood pressure management is so important.


    An aneurysm is a weakened blood vessel that ends up bulging and sometimes ruptures. The ASA notes that aneurysms develop over time and are more common in people over 40. They often develop due to constant pressure from blood flow.

    Aneurysms grow slowly and weaken as they enlarge. It’s unknown how to predict when or if they will rupture. High blood pressure can weaken arteries, and straining can increase blood pressure.

    Arteriovenous Malformations (AVMs)

    An AVM is something that people are usually born with. They occur in less than 1% of the population, according to Harvard Health. An AVM consists of an abnormal tangle of arteries and veins.

    • Arteries bring blood that is rich in oxygen from the heart to the rest of the body.
    • Veins transport the blood that has delivered the oxygen (and now needs to be oxygenated) back to the heart.
    • Capillaries are tiny vessels that connect arteries and veins. They also exchange nutrients from the blood to surrounding tissues.

    An AVM changes and disrupts this natural process. It connects arteries directly to veins and completely bypasses capillaries. These fragile, tangled vessels can become damaged over time. This leads to a rupture and resulting hemorrhage.

    Types of Hemorrhagic Strokes

    Intracerebral Hemorrhage

    This type of hemorrhagic stroke is two times more common than those caused by a subarachnoid hemorrhage.

    An intracerebral hemorrhage can happen deep in the brain or towards the surface. It occurs when thin-walled arteries in the brain burst and cause blood to flow into the brain tissue. This forms a hematoma: a clotted or partially-clotted pool of blood.

    The part of the brain that the ruptured artery served now becomes starved of oxygen. This is when brain cell death occurs.

    Pressure can also build-up and cause the brain to press against the skull. Surgeons may have to remove the hematoma to reduce pressure within the skull.

    Subarachnoid Hemorrhage

    This type of hemorrhagic stroke occurs in the subarachnoid space between the brain and the skull. This space is filled with cerebrospinal fluid (CSF) which cushions the brain.

    Subarachnoid hemorrhages are often caused by a ruptured aneurysm. This causes blood to enter the subarachnoid space, putting pressure on the brain. The area of the brain served by the ruptured artery begins to die due to a lack of oxygen and nutrients.

    This bleeding can also interrupt the normal flow of CSF. It can cause the ventricles to enlarge due to the extra fluid in the brain, aka hydrocephalus. The ventricles are cavities deep in the brain and are responsible for producing and transporting CSF.

    And that’s a wrap! We’ve covered the 4 main types of strokes, and the basics of ischemic and hemorrhagic strokes. Stay tuned for upcoming posts on how the effects of a stroke change based on brain location and a series on neuroplasticity!

    Anger Encompasses This Person

    Dear Joyce:


    I am 32 had my stroke only a year ago, but I still have an angry mood. I argue with my wife, mother, and friends when I know they mean the best for me. Does this anger go away or will I have it forever!


    Angry is LA


    Dear Angry in LA,


    The answer is complicated, and some people get rid of the anger quickly, while some take longer. But no, you won’t have it forever.


    I have a theory: the better your life was before the stroke, the longer I will take you to get rid of the anger. There’s a reason for this theory: Let’s say you enjoy your job. You just got a promotion. You go shopping on the weekends and buy another new purse or an article of clothing. All is right with the world, and in a split second, no longer. You have a stroke, and everything goes in the reverse immediately. You no longer have the job, your promotion bit the dust, and you are not able to browse in stores as you once have.


    Only by looking back, you realize the anger is going away. But by asking your question, and realizing that an anger mood is not where you want to be, you have an awareness and are cognizant of the fact you don’t want to be angry any longer. Good luck as your anger is slowly losing its grip on you!



    Simple Pleasures for This Simple Stroke Survivor

    Looking back over my life, I had very complicated pleasures. For example, when I wanted to convince people in the office to maintain their opposition to a particular practice, it all depended on what other people would do. Crowd mentality indeed. Or when I celebrated holidays, the host would make what she liked rather than what the compan liked. Mom mentality.

    But as a stroke survivor, I found that my preferences transformed into simple. Here are the top ten, all of which I didn’t do before my stroke:

    Waking up to greet the day

    Waking up every day is my top simple pleasure. What do I do to achieve that goal? Well, there are no guarantees in life, but switching over to the plant diet almost a year ago gave me so many chances to stay healthy. In pretending about the pandemic, I maintain that eating high Vitamin C oranges somehow kept me immune from the coronavirus. That theory is not on the proven list, but eating Vitamin C is great for preventing or lessen the severity of so many other diseases anyway.

    Adding the perfect amount of water to my oatmeal

    I actually celebrate with an audible “Yes!” multiple times when my oatmeal comes out of the microwave perfectly. Of course, nobody is there to hear it, and I find that reassuring. It’s a game I play with myself, guessing which amount of water is suitable to add to the instant variety. Somebody who lives with one or more people doesn’t get it, but I get it. I am the only one I have to please.

    Watching the washer wash

    I like the sound of the washer wash clothes. I like the “Spin” cycle the best. Oftentimes, I find myself watching the washer wash the clothes–my clothes, mesmerized–which I could have worn over again but didn’t because the washer sound is relaxing, which I wouldn’t hear on re-wearing.

    Balancing my checkbook

    I used to balance my checkbook as drudgery, something I had to do to keep my sanity in check, often getting frustrated when I reversed numbers or got the period in the wrong place. Now, I welcome it every month because I remembered my math functions. And I like the way my handwriting improved in 11 years, keeping the figures inside the lines.

    Monitoring the vegan cooking

    I was always a participant, from jumping rope as a youngster, to playing my songs as a teen in the talent show, to throwing events as an adult. Now, cooking-wise, I’m still a participant. Clare, my nurse friend, who prepares all my meals, brings the pot over to me to check on the consistency or taste or color. I’d rather cook myself, but having got the handle on do’s and dont’s. this method is the next best thing.

    Observing the houses surrounded by nature

    Normally, in those normal times before the stroke, I went around the block and that was it, not noticing the fine points. Now, my friend and I find something new every time we go like a new fence, plants and trees in bloom, or a missing shingle or the roof. That’s the game we play, because remembering what we found a few days ago keeps my memory sharp.

    Making a schedule

    Every time my friend comes which are on weekdays, I present her with a to-do list of things that should be done. I can move the entries if she doesn’t have time to finish, and she likes to check off completed tasks. Most importantly, this system, too, helps me remember the current and future tasks.

    Pronouncing words until I say them perfectly

    I have trouble pronouncing some words. Sometimes, if I say it over and over in a day, that will be enough for future times. Sometimes, like with the “scr” words, as in prescription and subscription, having practiced for 8 years, I still get tripped up. I used to be a public speaker so it’s difficult I can’t do that anymore, but just saying words correctly is the next best thing in order to communicate effectively. When somebody says, “I can’t understand you,” my heart just breaks.

    Getting a coffee package from Amazon

    Not that trillionaire Jeff Bezos need free advertising, but I look forward to this Amazon coffee coming because it wakes me up with a jolt in the morning. A jolt equals instant awareness of my surroundings so that I have an uninterrupted and clutter-free path when I’m going to walk around. At $4.95 for a 12-ounce bag, you can sample all the flavors while staying alert. In a sense, priceless.

    Counting the birds that fly by in 10 minutes

    Birds, predominantly crows, fly by in groups. I never see one crow without another one to follow. Especially now that it’s mating season, the birds are frequent. And no, I don’t watch the birds “fornicating.” Sheesh! Birds, too, need a little privacy. And don’t think I’m a nerd. People need something to do in this pandemic.

    New Facts on COVID-19: “Don’t Come In Unless You’re Short of Breath” Doesn’t Apply Anymore

    I had an annoying, dry cough in the beginning of February. Then the cough roared like a hungry beast. No fever. Just the cough, with shortness of breath and fatigue that escalated quickly over a two-week period. Was it COVID-19, I asked myself repeatedly? I don’t know now, and maybe I wouldn’t ever know, unless the testing starts very shortly to all people, rich or poor, healthy (for the asymptomatics amongst us) or sick, despite what Jared Kushner, as a spokesman for President Trump, says about enough tests now. I haven’t had one at the peak of coughing/shortness of breath/fatigue. Have you? Just to make sure?

    But with Trump in charge, forget that option. “Coming up shortly,” or “Within the next two weeks,” or, my favorite, “Soon” is Trump-speak, when most people, after the passage of time, forget he made those promises in the first place. But I remember. You can count on that.

    WIRED had an article written by Megan Molteni who says that scientists are running like crazy to comprehend why some patients also develop neurological ailments like confusion, stroke, seizure, or loss of smell. Stories of other, stranger symptoms like headaches, confusion, seizures, tingling and numbness, the loss of smell or taste have been going on for weeks.

    “The medicines we use to treat any infection have very different penetrations into the central nervous system,” says S. Andrew Josephson, chair of the neurology department at the University of California, San Francisco. He is saying that most drugs can’t pass through the blood-brain barrier, a living wall around the brain. He also says if the coronavirus is penetrating the barrier and infecting neurons, that could make it more difficult to find appropriate treatments.

    When the virus first started in Wuhan, China, health records indicate that 214 patients admitted to the Union Hospital of Huazhong University of Science and Technology, 36.4 percent of the patients showed signs of nervous-system-related issues, including headaches, dizziness, confusion, strokes, prolonged seizure, and a slowly disappearing sense of smell, some before the fever and cough were apparent.

    “We’ve been telling people that the major complications of this new disease are pulmonary, but it appears there are a fair number of neurologic complications that patients and their physicians should be aware of,” says Josephson.

    Without that information, datasets in particular, there’s no way to know how to interpret reports on patients, and “single cases are tantalizing, but they can be fraught with coincidence,” says Josephson.

    COVID-19’s horrendous death toll, 61, 656 as of this writing, is other-worldly, science fiction-like worthy, and not many autopsies are being done. Only some pictures of the lungs, but a good chance that there’s some viral invasion of the brain.

    A paper in the New England Journal of Medicine examining 58 patients in Strasbourg, France, found that more than half were confused or agitated, with brain imaging suggesting inflammation.

    “You’ve been hearing that this is a breathing problem, but it also affects what we most care about, the brain,” says Josephson. “If you become confused, if you’re having problems thinking, those are reasons to seek medical attention,” he added.

    Viruses affect the brain, explained Michel Toledano, a neurologist at Mayo Clinic in Minnesota. The brain is protected by something called the blood-brain-barrier, something that Josephson says, too, which blocks foreign substances but could be penetrated if compromised.

    Since loss of smell is one of the symptoms of COVID-19, some have hypothesized the nose might be the pathway to the brain. But in the case of the novel coronavirus, doctors hold on to current evidence that the neurological impacts are more likely the result of overactive immune response rather than brain invasion.

    Jennifer Frontera, who is also a professor at NYU School of Medicine, explains documenting notable cases including seizures in COVID-19 patients with no prior history of the episodes, and new patterns of small brain hemorrhages.

    “We’re seeing a lot of consults of patients presenting in confusional states,” said Rohan Arora, a neurologist at the Long Island Jewish Forest Hills hospital, adding that more than 40 percent of recovered virus patients. “Returning to normal,” added Arora, “appears to be taking longer than for people who suffer heart failure or stroke.” [Apparently, Dr. Arora hasn’t worked extensively with stroke patients. After 11 years, I’m still recovering. Just sayin’.]

    Anyway, good advice if you have any of those symptoms–headaches, dizziness, confusion,  prolonged seizure, and a disappearing sense of smell–go to the doctor. Many doctors are seeing patients through tele-conference now. If you had a stroke as a result of COVID-19, you probably have already gone to the hospital where there are tests but not too many of them.

    One more thing. How about Trump supporters try injecting or swallowing disinfectants to see if they work or this headline: Online demand for hydroxychloroquine surged 1,000% after Trump backed it, study finds. I say that statement with sarcasm, but unlike Trump, he said it confidently when he recommended Lysol, Clorox, and hydroxychloroquine, despite his walkback when people were alarmed and others broke into peals of laughter. It’s on tape, Mr. President.