The Quest for Sleep

by Aimee Sterk, LMSW, MATP Staff

I first wrote this piece in 2013 and have dug it up to share again in honor of my respiratory therapist, David Gritter, retiring. He actually retired in May, but I was on maternity leave so I’m sharing this in my first post since returning. Dave is among a group of medical and helping professionals from a variety of disciplines that have come into my life and saved it. Because of him, I tried again to use devices to help me sleep. Because of him, I am no longer dangerously sleepy at the wheel. Because of him, I’m now an evangelist for sleep studies and have gotten at least one friend to go in (and find out she needed a CPAP too). Because of Dave, and my new sleep specialist physician Dr. Jason Coles, I am now using a BiPAP and I made it through four pregnancies, two losses, and IVF which all complicated my sleep. Because of them and their help and guidance, I get to partner with my husband to raise two beautiful kids and participate actively in the communities and work that I love.

Bipap
My trusty BiPAP and face mask which Dr Coles and Dave helped me get during my pregnancies when my air swallowing made my CPAP unusable for me. BiPAPs have two levels of pressure (lower pressure on the exhale) which helped make my air swallowing more manageable. I added the cardboard flap on the front to cover the bright light that comes on when you turn the machine on.

July 2013

I have been on a quest for good sleep for the better part of 8 years. I can remember having trouble sleeping even as a kid, but it didn’t affect my energy level during the day. As I age, the lack of energy is catching up with me. I sought help from a sleep specialist when my tiredness was affecting my ability to drive safely.

The first sleep specialist I saw didn’t believe my assertion that my hormonal problems (I have polycystic ovarian syndrome—PCOS) were related to my sleep. He discounted my feelings and my evidence and told me I needed a series of sleep studies and likely I was experiencing sleep problems as a result of clinical depression. I had clinical depression previously and knew I didn’t have it again. I didn’t appreciate the way he talked to me or his jump to diagnose or his statement that I needed many sleep studies for thousands of dollars to get to the bottom of this problem.  I didn’t make a follow up appointment.

I did some research on my own, switched up some of my medications, and had some relief for a while, then, I again had trouble driving safely. I looked for a new sleep specialist.

The next sleep specialist I saw listened to me, believed me, and convinced me to have a sleep study.

The sleep study showed I have upper airway resistance syndrome (UARS). While not sleep apnea, it can produce similar disturbances in sleep. The brain waves from my sleep study also confirmed that I was not clinically depressed at that time.

I began the journey for ways to resolve UARS. After trying bite splints, consults for surgical options, sleeping in new positions, and fancy pillows that didn’t work, my sleep specialist convinced me to try a CPAP again (continuous positive air pressure) device.

I had given up on a CPAP before after difficulties with swallowing air. A previous respiratory therapist was dismissive of my complaints and I simply gave up. I wasn’t excited to try again.  Just after a new respiratory therapist, Dave Gritter, came in the room, I burst into frustrated and defeated tears. I really didn’t believe this device would help me.

Dave was very patient and explained my sleep study to me in more detail, told me about research that showed CPAPs can be effective with UARS and also told me that new definitions of apnea were being developed and I did fit in the new definitions. He told me he truly believed that this device would work for me. He also explained that while some people notice a difference immediately, others take some time and/or don’t actually notice a difference until someone points out to them that they seem less tired. He encouraged me to try to rest and read while using the CPAP to get used to it and to take it off in the middle of the night if it was bothering me. He gave me a number to call if I had trouble.

I started out on a very low pressure to see if it would work without causing me to swallow air. I still had lots of problems swallowing air, but with reassurance from Dave, I kept using the CPAP. I didn’t like how it made me look—like a strange astronaut—and

Air mask
See?! Even the model looks like an astronaut (I’m still working on disability pride here, clearly), but this device and mask save my life every night.

was embarrassed to have to use it while staying at a friend’s house. My husband was supportive though. After 3 weeks, I noticed feeling much better during the day. I didn’t feel like I needed a nap and I no longer worried about falling asleep at the wheel. By two months in, I was using the CPAP all night and wrote a letter to Dave saying that the device was life changing.

Since that time, I have had ups and downs. I think they are related to hormone fluctuations and my other specialists have said that is something I have to live with.

While I wish I was well-rested and energetic all the time, as I was in the early months of using the CPAP, I’m still convinced that it helps me. I very rarely have trouble driving—a key sign to me that there is a problem. I used to have trouble driving every day.

I’m grateful for the journey I’ve been on. I knew myself, found health professionals that listened to me, believed me, and supported me to do what was best for me. I continue to look for ways to feel better but know that my disabilities present both gifts and barriers. I have learned a lot about good sleep habits, my own body, and how it functions, and the gifts of feistiness and noncompliance when dealing with health professionals who aren’t really on my team. I have found a piece of Assistive Technology that helps me do what I want to do—sleep.  It’s not perfect, but it’s a good start.

Did you know that untreated sleep apnea takes years off of your life and that driving while drowsy is just as dangerous as drunk driving?

How have you advocated for yourself in the medical community to get to professionals that have helped?

Don’t Fail that Fall

by Aimee Sterk

Did you know that one out of three adults age 65 and older fall each year?

Disability.gov had such a great post about falls prevention, and safety, we wanted to share it here.

Falls are the number one cause of fractures, hospital admissions for trauma, loss of independence and injury or deaths for seniors. But you can take action! Learn how to prevent falls outdoors and at home or take a falls risk self-assessment. Visit the website of the Fall Prevention Center of Excellence to find information to keep you and your loved ones safe from falls. The site has resources for older adults and caregivers, including the three main strategies of fall prevention: balance training and physical activity, medical management and environmental or home modifications. Get answers to frequently asked questions about falls and aging adults from the National Institutes of Health’s SeniorHealth.gov. Learn about fall prevention programs and strategies from the National Falls Prevention Resource Center. For more information, read “6 Steps for Preventing Falls” for more information.

Panic Attack? There’s an app for that!

I had my first panic attack exactly 3 years ago, outside my doctor’s office. I’ve also had some PTSD flare ups recently so wanted to share this older blog post about my first panic attack as a reminder to myself and hopefully a help for others who have panic attacks.

In 2015, stress from recent health crises and triggers from childhood trauma culminated in a very scary experience–the panic attack in the parking lot of my doctor’s office. My friend was able to talk me through breathing /stopping hyperventilating and came to get me and take me home.

I later talked with my therapist about plans to prevent a future full-blown panic attack. She suggested noticing symptoms that came up as my anxiety increased. For me this is sweating, pounding heartbeat, and feeling trapped. Knowing this, she suggested using several interventions to prevent escalation and  breathing techniques to try to calm myself. This worked and helped for the next couple of days.

That is, until I was at an emergency preparedness conference and they were talking about critical incident stress management (CISM). I had recently run into a woman who I worked with when she/we were attacked and she was choked at our workplace. She could have been killed in the attack. After that incident, we had a critical incident debriefing. At the conference, the memories of that incident started to come flooding back, along with the feelings of guilt having recently run into my former colleague. Then, the conference presenter showed a video of workplace violence as an example—in a hospital setting (which was the setting of our attack). So, then I was done for. I hastily left the room and retreated to a quiet corner down a hallway.

I was breathing rapidly and tried to call a therapist friend immediately as my attempts at regulating my breathing were failing miserably. I got a voicemail. Not wanting to bother the friend that helped me last time, I decided I was going to try to go it alone until the therapist could call back.

the front page of the PTSD Coach App

I remembered that I had downloaded PTSD Coach, an app designed by the Veterans Administration, onto my iPhone and had been using it for anxiety and depression. The app has a tool for managing symptoms and one of the symptoms you can select is “Reminded of Trauma.” I selected that and rated my distress on a level from 1-10. I gave myself an 8 and the app suggested tools accordingly. It gave me the option of distracting and laughing/reading a comic book. I thought to myself ummm no, that isn’t going to work right now, so I gave that a thumbs down and asked for a new tool.

PTSD Coach then suggested Deep Breathing—putting on headphones and being led through a breathing exercise. Nice idea, but I left my headphones at home and I was at the end of a hallway where people could possibly hear me. New tool please!

Then we started to get somewhere—the app suggested slowly counting to 100. Yes, that helped me calm down some. Progress! After that, I asked for yet another tool, and it guided me through the RID Tool. R= relax. The app suggested breathing in and out slowly. As you breathe in think “let,” and as you breathe out think “go.” A 30 second timer started counting down.  You can then add 30 more seconds or move on. I took another 30 seconds.  The I=identify the trigger. The app suggested going over the last few minutes and hours and identifying what reminders of your trauma you encountered. I easily listed these in the space provided.  It then said once the triggers are identified, it is important to notice how it is just a reminder, and not the actual trauma happening again. At first I thought, “Well, duh, I know that,” but telling myself that did actually help. Then I filled in the box about how this experience was different from the actual trauma. In D, you decide what to do now, the app said you can try to decrease the trigger’s power by deciding to stick around and see that you can handle it and that your stress will actually go down the longer you stick it out. It also suggested if you are angry or in danger of harming yourself or others, you should take a time out and seek support. I decided to sit outside the meeting room for a little longer in peace and rejoin the conference at the next break. I did attend a few more sessions then found myself completely exhausted and decided to leave the conference early.

Meanwhile, I tried one more tool before going back to the conference. The app suggested a grounding exercise, “Walk slowly focusing your attention on what it feels like to take each step.” This was a great way to re-center and continue calming myself. I got outside for a walk and remembered that walking and being in nature always helps me. After my walk, the app asked me to again rate my distress level. I gave myself a 5. Much better than before.

***Note if you give yourself a 9 or 10 the app does suggest calling for help using people you have pre-loaded into the app and/or nationwide hotlines.

Have you tried PTSD Coach? Has it helped? Any other apps that help you?

Pregnancy AT to the Rescue!

By Aimee Sterk, LMSW, MATP Staff

I’m just about to hit 32 weeks pregnant. With my age (42), and gestational diabetes making for a big baby to carry around, I’m starting to get very tired very fast. I’m also much more awkward and find myself having to grab things to catch my balance. Luckily, I went through this a mere year ago with our first baby we got to hold, so I’m resurrecting this blog from that pregnancy.

From 2016:

my new tub set up with my shower bench installed and my handy handheld showerheadI told my husband the thought of showering exhausted me. And, smart man that he is, (and married to someone that works in AT), he immediately suggested a shower chair. It was a relief to even hear him offer. He measured our tub and took off for the nearest Meijer and came home with just what I asked for—one as wide as possible, without a back, with drainage holes and height-adjustable. Paired with our pre-existing handheld showerhead, I had the most relaxing and comfortable shower I have had in months! Yay for AT!

When I posted about the shower chair on a Facebook group I’m part of for pregnant women, so proud of my husband’s brilliant idea, several other women said they already had purchased shower chairs as well and loved them too. One even had a stylish teak one. Her budget is larger than mine the teak ones I found on Amazon were in the $100-$130 range while my plastic bench was $35 at Meijer and $25 on Amazon.

lotion applicator--small oval sponge on a stickAlso newer to me, is difficulty putting on my socks and administering medication for my toe. Again, AT to the rescue. A sock aid and long handled lotion applicator, and I am back in business. My favorite sock aid has fingers that are easy to squish together to load the sock and terry cloth on the outside to better grip the sock. It is called the Carex sock aid or sometimes the sock aide flexible deluxe and is about $9 on Amazon. sock aidThe lotion applicator I chose has replaceable sponge heads and is about $15 for two applicators and 6 replacement sponges.

Final on my wish list are shoes that can handle edema (without laces). This summer I found sandals to be the perfect option. When my feet were swollen, I just adjusted the Velcro straps larger for more comfort. Then when the swelling went down, I could make them smaller again. Now that winter is here, I’m not finding good options for expansion and contraction so I’m just borrowing my mom’s shoes that are bigger.

 

What AT do you find useful when fatigue is affecting you? Or edema? Or pregnancy?

Dating, Intimacy, Sex, Disability and AT

By Aimee Sterk, LMSW, MATP Team

This week has been a really weird conglomeration of anniversaries and news that are all muddling together in my head. Eleven years ago this week, I went on my first date with my husband. Two years ago this week, we put a deposit down for IVF that led to us having our son after battling infertility and loss for 9 years. In the news this week and this past year, are daily reports of the MSU doctor who sexually assaulted and abused hundreds of female athletes. His trial is ending and victims are making their statements. I was abused by my pediatrician as a child, the ultimate end result being PTSD that was triggered when we had our losses and I had more invasive treatments for the losses and infertility. A series of NPR stories has covered the epidemic of sexual abuse among people with disabilities, especially women with developmental disabilities. My son turned one and my daughter is due in March. I think about protecting them and teaching them about their bodies, safety, and love. Sexual abuse, domestic violence, dating, intimacy, sexual health, they are all on my mind—and I’m being bombarded with information and stories and reminders.

red and pink interlocking hearts

Like many people with disabilities, I started dating much later in life. Understanding and accepting my bi identity along with facing my thoughts about my body and my worth was necessary before I could consider dating. I waited until I was in my 30s. For many reasons, this turned out to be a good thing. While I spent many years feeling like I was unlovable, in the end I grew emotionally and built a life I loved and truly felt like finding a person to love would just be adding to something that was already pretty awesome. Ultimately, finding and marrying my husband and having children with him was the best thing that has ever happened to me. These experiences have been the very best in my life. I’ve also endured the very worst experiences of my life together with him. Dating, love, marriage—these are things that many people want to experience. With disabilities, there are extra complications and oppression.

Kristy Liddiard, in her work to face and rid ourselves of shame experienced by women with disabilities around the areas of sex and intimacy encourages us, “ …This can only happen by sharing our stories, lives and experiences. Stories can – if voiced and heard – be productive, useful, and valuable. Stories can define a place and people. They offer a sense of collective experience; a means to claim space, foster a positive identities and experiences, and demand social and sexual justice. Collectively, telling and sharing our stories is how we can build sexual cultures and communities as we want them; ones which fit all of our bodies, pleasures and desires; ones which empower rather than oppress. So, what’s your sexual story?”

Samantha Evans agrees, “From the issue of privacy in shared living or with carers, to conditions, medications and treatments making sex difficult, the discussion of sex and disability shouldn’t be shied away from.”

So, let’s take a look at just the tip of this iceberg of taboo around dating, sex, and disability. To start with, dating, there’s a great article about some myths of online dating with a disability in Psychology Today. Dating apps and websites provide a great option for people with disabilities to get into dating. I had my share of frustrations with online dating when I met my husband—I told him I was shutting down my profile and giving up and gave him my email address. That said, it did actually work out and this was very early in the online dating scene. When accessible, these platforms provide a way of meeting lots of people you wouldn’t run into in everyday life to cast a wider net. While there are sites to just connect with other people with disabilities, OKCupid, Tinder, and other mainstream sites are also open to people with disabilities. Choosing to disclose your disability is a big decision. I am quite open about my disabilities so like Emily Landau, I discussed my disabilities and other target identities early and often when online dating. Emily’s piece in the New York Times talks about authenticity and rejection and her decision to disclose when online dating. This is something to consider before creating a profile, or like her, it may be something that evolves.

Getting to know each other and intimacy are a big chunk of the dating framework and how long those last before moving into sexual intimacy is entirely personal. I’m not really coming up with wisdom, advice, or AT for building intimacy right now, so I’ll jump right into sex.

People with disabilities are often left out of sex ed classes. This is a huge disservice to us. Surprise! Many people with disabilities do have sex. We need to know how our bodies work and talk about healthy relationships. We also need information on safe sex, pregnancy prevention, and consent. More and more, this information is being shared, but for many of us that are long out of school, we need to seek out other resources. Here are a few:

All the articles I can find on AT for sexual intimacy focus on physical disabilities, and many commentaries are mostly assuming people are interested in heterosexual intimacy and sex. If you know of resources for AT and sexual intimacy for LGBTQIA people with disabilities, or mental health, sensory, or cognitive disabilities, please share them!

I can’t end this article without some resources on domestic violence and sexual assault. People with disabilities are far more often targets and victims of domestic violence and sexual assault. Key points here for me: it is never your fault and there is help available. We all must work together to end abuse of people with disabilities.

While my journey to find intimacy, love, and sex has had many detours and obstacles, ultimately loving and finding myself, seeing and appreciating my disabilities, and understanding and honoring myself as a sexual human being all have led me to my “fairytale” (for now at least) ending. Online dating was a key piece of AT that I used to address anxiety, meet a variety of people, and explore relationship building in a relatively safe environment. In addition, resources AT for sexual intimacy are also available. As  Valentines’ Day approaches, perhaps you are thinking about finding love and/or sexual partners. Hopefully these resources are helpful.

Advocacy Help for AT

By Aimee Sterk, LMSW, MATP Staff

A manual wheelchair reclined back showing the various angles of the tilt in space featureMy friend contacted me last week asking about the process for working with a nursing home to get his father, a resident in the home, a new wheelchair. It seems the nursing home suggested a very specialized wheelchair to meet his father’s needs, but when the home was told they had to provide the wheelchair out of their regular per diem rate, they were now suggesting a far cheaper, inferior option. That made me think it was time for another blog about advocating for AT needs.

There are a couple options to help you advocate for your needs for assistive technology (AT) or durable medical equipment (DME) in Michigan.

If you have a MI Health Link Plan (a combination of Medicare and Medicaid) the MI Health Link Ombudsman Program is here to help you access the DME you need if you have been denied coverage or are having trouble getting what you need. Call them directly—lawyers answer all the calls and are ready to help—at 888-746-6456. It is also possible to contact the Nursing Home Ombudsman program if the nursing facility is not providing needed AT at 866-485-9393 or 517-827-8040 for the State Long Term Care Ombudsman.

If you need help getting AT or DME through your school system, community mental health, the MiChoice Waiver, Medicare, Medicaid (or Medicaid funded nursing facility), or Michigan Rehabilitation Services (if employment related), contact Michigan Protection and Advocacy Services’ AT team at 800-288-5923. Michigan Protection and Advocacy Services receives direct federal funding to help people with disabilities of all ages access the AT they need.

The following is from Justice In Aging:

“Consumers with both Medicare and Medicaid face recurring problems getting approval for Durable Medical Equipment (DME), getting repairs, and finding reliable suppliers. DME includes many vital items, such as wheelchairs, walkers, hospital beds, home oxygen equipment, and even diabetes test strips used with a glucose monitor. ”

Some of the obstacles in getting access to DME include:

  • Conflicting DME approval processes for Medicare and Medicaid
  • DME access problems for people who have Medicaid first and then become eligible for Medicare
  • Getting coverage for repairs, particularly getting Medicare coverage for an item originally obtained through Medicaid
  • Differences between Medicare and Medicaid approved suppliers (many providers are approved for one program, but not the other)”

It is so important that people access the equipment they need to live in the setting of their choosing. Please, use the advocacy services to get the AT/DME you or someone you care about needs.

Have you contacted Michigan Protection and Advocacy Services for help with getting AT? Have you used an ombudsman program? What was your experience? What other advocacy tools have you used?

 

All I want for Christmas is some new AT (And I want to share this other article too)

By Aimee Sterk, LMSW, MATP Team Member

This year for Christmas, I am asking for the Fisher Wallace Stimulator device. I heard about it from my therapist. According the website, it uses electrical impulses to stimulate the brain to produce more serotonin and melatonin while reducing cortisol. It can be used for depression, anxiety, and insomnia. Fisher Wallace notes that the device is FDA cleared and has been used in many research studies.

The device is shaped like an elongated deck of cards and has a pyramid on the front with four lights in the pyramid indicating the strength of the neurostimulation and two cords attached to two sponge electrodes.
The Fisher Wallace Stimulator and a man using the device with the moistened sponge electrodes applied to his temples and held in place by a headband. Image from the Daily Beast: https://www.thedailybeast.com/fisher-wallace-stimulator-behind-the-do-it-yourself-shock-therapy

All of this sounds so good to me right now. I was on an SSRI while pregnant with my son and it really helped me combat depression and anxiety associated with pregnancy, losses, and PTSD while I was carrying him. I took half the lowest dose of the medication prescribed. Still, just as I am highly sensitive to meds, it seems my son is too, and he had withdrawal symptoms from my medication after he was born. This was devastating to me at a time that we were already in crisis as my son had to be in the NICU after delivery for another condition.

This pregnancy, I’m determined not to take an SSRI, but am again experiencing significant anxiety and depression. I had looked into non-pharmaceutical options when pregnant with my son (specifically TMS) but the cost was very high, sometimes I met the clinical criteria and sometimes I didn’t, and the commitment of daily, somewhat painful treatment, for 4-6 weeks, at a facility across town seemed overwhelming.

So, this year, I want to try the Fisher Wallace Stimulator as a non-invasive and less costly option than TMS (it still is expensive at $699). I do wonder if I can commit to using the Fisher Wallace twice a day for 20 minutes though–with a 1-year old and another baby on the way along with a full-time job, life is pretty busy right now.

I put the word out there to coworkers, friends and family to see if anyone I know has used the device. It turns out the husband of a friend is currently using it to treat his ADHD and has seen improvements as he tries to get off of his medication.

I also did some googling. In addition to the company’s website, if you are interested, you may want to check out the guest blog on Scientific American that details another user’s story and has links to some relative research. You may also want to check out the reviews on Drugs.com which tend toward neutral or negative with some people wondering about a placebo effect.

Currently, the device is out of reach financially for me, but possibly, when my Flexible Spending Account balance refills January 1st, I’ll get a prescription and consider giving this device a try (unless Santa delivers one first). In the meantime, I’m tracking my mood, taking my vitamin D, practicing mindful self-compassion and the lovingkindness meditation.

Have you tried the device? Did it make a difference in your life? What AT or techniques have you used for depression and anxiety when medication wasn’t an option?

And speaking of mental health, I have to share this amazingly good article that I learned about from Disability Network Southwest Michigan staff. It deeply speaks to me and has also touched colleagues and friends—a must read for people with mental illness and allies. It covers the dangers of being “High Functioning” (the authors words, ones I don’t use myself) mentally ill and touches on the damage of disability hierarchies and the intersectionality of mental health/disability and other identities.  Why I’m Done Being a Good Mentally Ill Person.

Weighed Down for Better Sleep

By Aimee Sterk, LMSW, MATP Staff

a cartoon person awake in bed with bloodshot eyes, sheep jumping over them and a cat snuggled in on their lap.I have a long history of battling insomnia. Lately, I have been having even more problems sleeping following a series of life traumas and increased anxiety. My therapist suggested trying a weighted blanket. I had previously heard of weighted blankets as calming options for people on the Autism Spectrum. I never knew they have a variety of other uses.

According to an article in Psychology Today,

“Weighted blankets are one of our most powerful tools for helping people who are anxious, upset, [and feeling out of sorts],” says Karen Moore (link is external), OTR/L, an occupational therapist in Franconia, N.H. These special blankets are filled with weighted pellets, which are sewn into compartments to keep them evenly distributed. Weighted blankets are also sometimes marketed for general use as an aid to sleep and relaxation.

“These blankets work by providing input to the deep pressure touch receptors throughout the body,” Moore says. “Deep pressure touch helps the body relax. Like a firm hug, weighted blankets help us feel secure, grounded, and safe.” Moore says this is the reason many people like to sleep under a comforter even in summer.

What a revelation!  After posting on Facebook, to friends inside and outside the disability community, looking for local resources to try a weighted blanket, several  friends chimed in that they too thought these blankets would be helpful for them. Some even said they were using one without realizing it—heavy comforters were their preference all year. One friend, who runs an Autism Center, connected me with some online options for buying weighted blankets and making your own. Another connected me with Christie DePrekel at Peaceful Product . These chance connections via social media have changed my life!

Christie of Peaceful Product is local and offered me several weights of blankets to try as I was hesitant to commit to the investment without knowing if the blankets would help me—though I had a feeling they would. I stopped by later the same day to pick up the sample blankets.

I tried a 15 pound and a 10 pound blanket and found I far preferred the heavier variety—and that my sleep and anxiety were much improved. I slept soundly (for me) the night before I had to give a speech to a nationwide audience—which normally would not be how I’d sleep before such a big event. I have found I also like sitting on the couch with the calming weight on me.

Christie mentioned that some members of her family have sensory processing disabilities, which is why she started making the blankets herself—looking to make quality items to meet their needs. Talking to her more about sensory processing, I realized that I too am sensitive to sound, pressure, smell, sight, and touch. Since I was a child I remember self-soothing by rolling my hands back and forth over a favorite blanket. I also achieve great peace when watching repetitive things like sprinklers or machines at work. I have met others friends who have the same type of soothing response. I also have created my  own type of squeeze machine having my partner hug me hard and/or lay on top of me while I’m on the floor, comforted by the intense pressure (until it’s hard to breathe). I wonder if it is all related?

Christie has seen weighted blankets help people with Autism, Aspergers, ADHD, Anxiety, PTSD, Insomnia, Sensory Processing Disorder, and Restless Leg Syndrome.

After deciding I definitely wanted my own weighted blanket, I met Christie at a fabric store and picked out some microplush fabric to cover my blanket (you should have seen me at the store with my eyes closed plunging my hands into the bolts of fabric to test their softness and soothingness). I then specified the size and weight I wanted, and one week later, my blanket was ready.

Weighted Blanket
I choose a colorful pattern of birds for one side of my giant weighted blanket and a lush blue for the other side.

I now sleep with it every night. The pressure is comforting on a primal level. I have trouble with night sweats, so the lightweight microplush has been helpful (the sample blankets were a thick fleece). If the weight didn’t affect the heat of the blanket at all, I would have gotten even heavier of a blanket.

The formula commonly used to choose the weight of the blanket is 10% of the body weight plus 1 or 2 pounds for children.  In older teens and adults this formula can be quite heavy so trying different weights like I did might be your best option. I found that in my arms a 10 pound blanket felt very very heavy.  But, once that weight was spread out over me, I thought it was way too light.

Have you tried a weighted blanket or have you been doing your own version of weighted blanket sleeping without even realizing that is what you were creating on your own?

Do you think something like this might work for you or someone you know?

The Nights are Longer and SAD is Here

By Aimee Sterk, LMSW, MATP Staff

I can feel the change in the seasons and I’m not enjoying it. Shorter days and longer nights start the cycle of Seasonal Affective Disorder (SAD) for me. This time of year I start feeling the energy drain and the pull of my bed increase. According to the Mayo Clinic, the causes of SAD aren’t entirely known but there is felt to be a genetic component and a chemical component the chemical components are related to reduction in sunlight and a corresponding reduction in serotonin and melatonin. Lower serotonin can trigger depression and melatonin helps with sleep.

The risk factors for SAD include living in places like Michigan—the further you live from the equator, the more common SAD is which is likely due to the decreased sunlight during winter.

Luckily for me, there are some treatment options involving assistive technology (AT) and lifestyle changes that really help me:

Light Therapy

light therapy boxA couple of years ago, when I was complaining about the dark falls and winters in Michigan and my belief that I had SAD, my coworker told me about light boxes. Each morning I start the day with 45 minutes in front of my lightbox. In fact, I’m writing this blog with it on. The bright light mimics outdoor light and appears to cause a change in brain chemicals linked to mood, most likely increasing serotonin. Studies have found that light therapy is effective for SAD and may be effective for nonseasonal depression.

I position myself 12-24 inches from the lightbox and have it off to the side of my computer monitor. I use it in the morning almost every day.  My box has bright white full spectrum light and produces 10,000 lumens. In the past, many SAD light therapy boxes were using blue light wavelengths, but recently research has indicated that broad spectrum light is more effective. For the past several years, my lightbox has helped make my SAD much more manageable.

I want people to know about possible side effects of light therapy and contraindications so I’ve copied some warnings below to be very aware of:

Are there any side effects or conditions where light therapy should be avoided?

“Individuals whose skin is especially sensitive to light, such as those with lupus (systemic lupus erythematosus) should consult a physician before attempting light therapy for any condition. You may be advised to avoid light therapy if you have a history of skin cancer or if your eyes are sensitive to light because of conditions such as glaucoma, cataracts, retinal detachment and retinopathy. In addition, light therapy has been reported to lead to mania in some patients with bipolar disorder (manic depression) and to cause suicidal thoughts. For these reasons, patients using light therapy boxes should report any mood changes or disturbing thoughts to their health care practitioners.
Certain drugs can increase sensitivity to sunlight and may cause skin reactions as a result of light therapy. These include antibiotics, anti-inflammatory drugs, some anti-histamines, lithium, the supplement melatonin and the herbal remedy St. John’s wort. If you’re taking any drug or supplement on a regular basis, check to make sure it won’t cause a reaction to light therapy.

Some ophthalmologists have warned that blue light, part of the full spectrum of light used in light therapy, could damage the retina and increase the risk of age-related macular degeneration, a progressive eye disorder that is the leading cause of blindness in people over the age of 55. So far, however, no research has confirmed that risk.

If you’re bothered by the glare from your light box, the blue light is probably responsible. You can screen it out by wearing special eyeglass lenses or clip-ons during treatment. There are also light boxes available that filter out the wavelengths believed to be most harmful.

Other side effects of light therapy are minimal. Some patients report headaches, eyestrain or eye irritation or nausea when they begin treatment, but these effects usually are mild and disappear after a few days.

Exercising

In this case, my DVD player and online streaming device are AT. My therapist informed me that exercise boosts serotonin and I find it helps me feel better about myself while reducing anxiety and stress. I regularly start my day with an exercise DVD or a streaming program when it’s too cold, dark, wet, or snowy outside to exercise out of doors.

Getting outside

There were brief periods of sunlight this past weekend and I made sure to get outside and hike and work in the yard. The Mayo Clinic suggests that getting outside within two hours of waking in the morning is most effective and that even on cold and cloudy days, getting outside is helpful.

Brightening my home and office

I make sure to open my drapes and have installed solar tubes in darker areas of my home (our hallway). I have painted the walls in our darkest rooms bright, light colors. When I’m up before the sun, I turn on all the lights in the area of the house that I am in.

Taking a vacation someplace warm and sunny

Florida-Mangrove-forests-in-the-south-of-the-peninsula-of-florida
One of my favorite vacations was to Florida. I especially loved paddling the mangroves with my husband in the bright sunshine and warmth in the middle of winter.

I know that I hit my limit of coping with Michigan weather every February so I save up all year to go someplace warm and sunny many years. If only I could find a way to bill that to my health insurance. Funny thing is, the article from the Mayo Clinic even recommends taking a trip as a way to manage SAD, Take a trip. If possible, take winter vacations in sunny, warm locations if you have winter seasonal affective disorder .”

Do you have SAD as well? What AT or strategies have worked for you?

 

Butterflies, Bracelets, and Rocks

By Aimee Sterk, LMSW, MATP Staff

My Facebook memories have been showing me that October is often a very hard month for me with many anniversaries of stressful events. I want to share a blog post I wrote two years ago as it came up in my Facebook memories as well and sparked a lot of discussion on my wall.

So here it is–how I was doing two years ago, and what AT got me through (and I’m still using these tools and techniques):

I have PTSD and have been triggered a lot lately. I can sense it happening. Something reminds me of a traumatic event and I start reliving it in my head. I started seeing a new therapist for EMDR (Eye Movement Desensitization and Reprocessing) after my old therapist left her practice and no longer takes my insurance. I dreaded having to start over—and having to share with her what has happened to me. Talking about past traumas re-traumatizes people and exacerbates PTSD. Luckily, my new therapist knew this and didn’t want to dig in—just wanted some generalizations, but as we were getting started, she could tell that I was going back to the experiences—and she had some great new techniques that helped me self-soothe enough so that I could interact with her. I’m now adding the Butterfly Technique and a large egg-shaped rock to my Calming Techniques and Items Toolbox in addition to the bracelet and weighted blanket that were already in there.

The Butterfly Hug Technique involves crossing your arms over your chest and linking

Butterfly Hug
A webcam shot of me holding my hands in the position I use for the Butterfly Hug.

your thumbs at your sternum. Your fingers are pointed up towards your collarbones, not towards your arms, and the finger tips rest just below or on your collarbones, palms facing down against your chest. You then pat yourself in this position for 1-3 minutes. This bilateral stimulation provides a sense of calm. It helps ground you and keep you in the present moment. It was originally used in Mexico helping survivors of a hurricane and has been used with inmates, many of whom have a trauma history, and others with PTSD. I put an image of a butterfly on my phone to remind me that I can do this technique any time. There is a great youtube video on the butterfly hug technique created by Debbie Augenthaler.

Rock
This snowflake obsidian rock fits well in my hand and offers enough weight and size to register strongly with my brain as I pass it back and forth between my hands. It helps with mindfulness.

The other technique she taught me uses a super low-tech piece of AT (assistive technology), a 3-4 inch egg shaped rock that fills the palm of your hand. She instructed me to take this rock (hers was polished marble) and pass it back and forth between my hands. I felt stupid at first, but then realized it was helping and did it for my entire appointment. I asked her what the technique was called and if the size of the rock/weight were important. She said it was a type of Brain Gym technique that also promotes bilateral brain stimulation. The size and weight are somewhat important—the rock needs to be big and heavy enough to register in your hands.  I found a large enough egg at a local store that carries crystals and meditation supplies. I find it helpful to use this technique to reconnect and calm—it allows me to return to mindfulness, being in the present moment and noticing my thoughts without judging them. Mindfulness is universally beneficial and helps with chronic pain, depression, anxiety, and stress and promotes well-being. There is now a free online course for Mindfulness Based Stress Reduction (other courses in person and online are $350-$450). I’m going to give it a try.

metta-bracelet.jpg
The different colored stones in this bracelet help me remember the different pieces of the lovingkindess or metta meditation.

While I wrote about my weighted blanket before, I haven’t shared about my loving kindness bracelet. I originally learned about loving kindness meditation as a mindfulness practice—a way to become present, decrease stress, and increase positive emotions and well-being. There are dozens of studies on the benefits of a loving kindness practice. I had been practicing it irregularly, especially when I was experiencing insomnia, and then more regularly after attending a workshop by Kristin Neff, an expert in self compassion. The loving-kindness meditation is a way to tap into the calming practice of sending love to yourself and to others and the world. I had trouble remembering to stop and do the loving kindness meditation and make it a part of my daily routine until I added my loving kindness/metta bracelet I got from Jan Lundy, an author, speaker, and spiritual director. Jan co-designed a bracelet with four different kinds of stones to represent each of the phrases you repeat in a loving kindness meditation. I can sit and meditate and use the stones as keys to remember:

May I be safe

May I be strong

May I be happy

May I live with peace and ease

I work my way around the bracelet first a couple times for myself, then for others. Jan has full instructions on her website. When I am anxious and overwhelmed, I need a visual cue to help me reset. Having a reminder on my wrist does just that, and then guides me in my practice. Jan’s bracelet is beautiful, but if cost is a barrier, you could go to a craft store or raid your closets and jewelry boxes and pick out beads with meanings for you and string your own.

What AT, techniques, and resources do you tap into for stress, anxiety, depression, and self-soothing?