Creative Thriving LLC

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Creative Thriving LLC

Healthcare for complex & commonly misunderstood conditions. Focus: Ehlers Danlos & related conditions

08/23/2023

FYI for those taking oral cromolyn, there has been a recall from one manufacturer.

Details from image:
Cromolyn Sodium Oral Solution (Concentrate) 100 mg/5 mL,produced by Ritedose Corporation, Columbia, South Carolina, for
Ritedose Pharmaceuticals.

The doses that have been recalled are from Lot number "23CE2, Exp. 03/31/2026" This
recall affects 44 cartons of Cromolyn Sodium Oral Solution (Concentrate) 100 mg/5
mL.

This does not apply to all cromolyn, check the label to see if it matches the above brand & lot

08/15/2023

Updated my resource page today! You can check it out here: www.CreativeThrivingLLC.com/resources

Caption for audio:
“Hi, this is Tasha, and I just updated my Resource page on my website. So, if you are looking for resources and want to learn more about EDS, hypermobility, POTS, Mast cell activation syndrome, neurodivergence, autism, adhd, lgbtq+ healthcare…probably something else… some Journal articles, please check it out and let me know if you have something to add or if you have any feedback!”

Video description: screenshot video scrolling through the resources page at www.CreativeThrivingLLC.com/resources

~~~
💻 How to reach me? Check out the connect page of my website (linked in bio)

📍Location? I work with patients in Oregon, Washington state via telehealth.
~~~

08/11/2023

Hello! Time for a re-introduction, as it’s been awhile since I posted & there are some new folks!

I’m Tasha Searles, a clinical nurse specialist (similar to a nurse practitioner), and owner of Creative Thriving.

I’ve been a clinical nurse specialist for almost 8 years, and a nurse for 12 years.
My love is helping patients connect the dots on a wide array of “mystery” symptoms.

Currently, most of my patients have some variety of symptomatic hypermobility, EDS, POTS or other type of dysautonomia, and mast cell disorders such as MCAS.

I personally have EDS, POTS, & MCAS. Like many in the EDS community I’m also autistic, adhd, & q***r 🌈

Most of my patients have been seeking answers for years and have a long history of being gaslit and dismissed by other providers. My hope is to create a different experience.

I practice from a trauma informed, HAES, Neurodiversity, lgbtqia+, & disability affirming lens.

I believe that you are the expert in yourself and want to take the time to really listen to your story.

In our initial visit we’ll take plenty of time to review your history & current concerns, then work together to formulate a plan for moving forward. Plans may include labs, imaging, medications, supplements, and lifestyle recommendations. My goal is to not just figure out the causes of your symptoms, but also help you find things that help you feel better!

If you’re looking for a clinician to help you connect the dots on various symptoms, or to help you find treatment options for your already diagnosed conditions, please reach out!

~Tasha

~~~
💻 How to reach me? Check out the connect page of my website (linked in bio)

📍Location? I work with patients in Oregon, Washington state via telehealth.
~~~

[ID: photo of Tasha a white person with blue eyes and short brown hair, they are smiling. In the background is a green field and faded out light blue sky]

05/30/2023

Love this! The ABCs of EDS 🦓

05/29/2023

Going along with my last post, I wanted to talk a bit about compounding medications.

People with allergies or sensitivities to particular inactive med/ supplement ingredients may need to get some of their medications through a compounding pharmacy if they are unable to find commercially made without the problematic ingredient.

Compounded medications are specially formulated by a compounding pharmacy to meet the individual needs of a specific patient.

Some reasons someone may need to have a compounded medication...

〰Allergies to ingredients in a commercially prepared formulation
e.g. dyes, preservatives, lactose, etc.
〰Trouble swallowing pills and needing medications in liquid form
〰Needing medication in a different dosage than is commercially available

While the ingredients used to create compounded medications are FDA approved, the compounded medication formulations are not regulated by the FDA.

It is important to use a reputable and certified compounding pharmacy.

Questions? Feel free to leave a comment below!

~Tasha

〰️
💻 How to reach me? Visit the connect page of my website [link in bio] to send me a secure message or schedule an appointment!

📍Location? I see patients in OR & WA state via telehealth.
〰️

05/26/2023

Inactive ingredients in medications & supplements

Meds & supplements contain more than the active ingredient.

These "Inactive ingredients", sometimes called "excipients" have a variety of purposes.

〰What they are?
Ingredients other than the actual medication

〰Why are they used?
Bind ingredients together
Prevent separation
Increase volume for easier measurement
Dyes for identification
Flavor/sweetener
Lengthen shelf life

〰Why it's important?
Some people are allergic or sensitive to some inactive ingredients.

A common question I receive is, "How do I know what the inactive ingredients are?"
〰Slide 2 has an example label. This particular label is for Allegra (fexofenadine), an over the counter allergy medication
〰The website dailymed.nlm.nih.gov can be helpful in finding labels / ingredient lists for prescription medications.

Some people don't have any issue with inactive ingredients, but many of my patients have sensitivities or allergies.

You don't need to avoid these unless they are causing you symptoms. Many people tolerate fine.

If you change medication or supplement brands / manufacturers & suddenly don't tolerate, it could be an excipient / inactive ingredient causing the problem.

As always, you should discuss with your licensed healthcare provider before making changes to your medication or supplement regimen.

Here are some common inactive ingredients that may cause allergy or sensitivity reactions, but certainly not all inclusive:

〰Artificial dye
Fd&C Blue #1
Fd&C Red #40,
Fd&C Yellow #6
& others

〰Preservatives
Benzoates
Benzalkonium chloride
Benzyl alcohol
Sulfites
Nitrites
MSG (monosodium glutamate)
Potassium sorbate

〰Emulsifiers
Polysorbates (e.g. polysorbate-20, polysorbate-80, etc)

〰Sweeteners
aspartame
sorbitol
xylitol
& others

〰Other common allergens
lactose
gluten
soy

Questions? Feel free to leave a comment below!

~Tasha

〰️
💻 How to reach me? Visit the connect page of my website [link in bio] to send me a secure message or schedule an appointment!

📍Location? I see patients in OR & WA state via telehealth.
〰️

05/24/2023

Often it can be challenging to pinpoint what may be triggering a symptom/ symptoms to flare.

Here are a few potential triggers to consider…
🩺Stress, Fatigue, & Illness

🌡Temperature hot/cold/change

🦠Infections & Toxins

🕯Fragrance & Chemicals

🌮Food & Beverages

🛟preservative, additives, & dyes

💊Medication & inactive ingredients

🏃‍♂️Activity

🌿Environment

Questions? Feel free to leave a comment below!

~Tasha

〰️
💻 How to reach me? Visit the connect page of my website [link in bio] to send me a secure message or schedule an appointment!

📍Location? I see patients in OR & WA state via telehealth.
〰️

05/23/2023

How to support the vagus nerve...

Improving vagus nerve function can be helpful to more easily move back into a parasympathetic (rest & digest) state after a stressor has passed, instead of staying stuck in a sympathetic (fight or flight) state.

See my last post for more on the vagus nerve.

Here are a few ideas for supporting the vagus nerve:
✨Slow paced breathing (see past breathing post)

✨Rocking or swaying back and forth

✨Massage

✨Gargling

✨Exercise

✨Singing & Humming

✨Weighted blanket or Lap pad

✨Increase salivation

✨Eye movement exercise

✨Laying on belly

✨Rubbing belly

✨Cold exposure

✨Laughing

✨Socializing & spending time with people you enjoy

Lots of references & resources on the Vagus nerve here: https://www.creativethrivingllc.com/post-links

Questions, or something to add? feel free to drop a comment below.

~Tasha

~~~
💻 How to reach me? Check out the connect page of my website (linked in bio)

📍Location? I serve clients in Oregon, Washington state via telehealth.
~~~

05/22/2023

I was going to share some about supporting the vagus nerve, but then realized I better share a bit more about the vagus nerve first…

What is the vagus nerve?
〰The Vagus nerve is the longest nerve in your body that connects your brain to many organs (e.g. heart, lungs, intestines, stomach).

What does the vagus nerve do?
〰The vagus nerve helps with the rest & digest" part of the nervous system and can impact most body processes such as: breathing, digestion, heart rate, & more!

Why is supporting the Vagus Nerve important?
〰Improving vagus nerve function can be helpful in getting out of the sympathetic "fight or flight" stress
state more easily.

〰We will always encounter stressors, and the "fight or flight" state serves a purpose, but we also want to be able to move easily back into the parasympathetic "rest and digest" state when the stress has passed.

📻Stay tuned for tips on supporting vagus nerve function!

Questions? Feel free to leave a comment below!

~Tasha

〰️
💻 How to reach me? Visit the connect page of my website [link in bio] to send me a secure message or schedule an appointment!

📍Location? I see patients in OR & WA state via telehealth.
〰️

05/21/2023

Many conditions commonly co-occur with Ehlers Danlos Syndrome & Hypermobility Spectrum Disorders, and an important part of EDS/HSD management is identifying & treating any co-occurring conditions.

This is one reason an EDS/HSD diagnosis is important, it provides a framework for better understanding symptoms and what other conditions may be co-occurring.

Treating co-occurring conditions often greatly improves quality of life.

Here are some, but certainly not all inclusive…

🦓Spinal instability including upper cervical spine instability (CCI/AAI)

🦓Sleep disorders, such as Obstructive Sleep Apnea (OSA) and others.

🦓Dysautonomia, including POTS

🦓Small fiber neuropathy

🦓Abdominal pain and gastrointestinal disorders such as gastroparesis

🦓Intracranial Hypertension

🦓Chiari malformation

🦓Tethered Cord Syndrome

🦓Mast Cell Activation Syndrome (MCAS)

🦓Various types of chronic pain

🦓Chronic fatigue

🦓ME/CFS

🦓Immune system disorders

🦓and more…

Questions, or something to add? feel free to drop a comment below.

~Tasha

~~~
💻 How to reach me? Check out the connect page of my website (linked in bio)

📍Location? I serve clients in Oregon, Washington state via telehealth.
~~~

05/21/2023

The last item under Criterion 2 feature A on the hEDS criteria is Aortic root dilation with a Z-score that is greater than +2

This is determined through an echocardiogram (an ultrasound of the heart) that looks at the aortic root, or the area of the aorta that attaches to the heart.

The cardiologist who reviews the echocardiogram images will often list a Z-score in the echocardiogram report, but if there is no dilation of the aorta the report may not list a z-score.

The Z-score isn't the actual diameter of the aorta, it is a measure that describes the diameter compared to a population mean (average). A Z-score of +2 is two standard deviations above the population mean.

Aortic root dilation quite often has no noticeable symptoms so it is recommended those being evaluated for EDS or other hereditable disorder of connective tissue (Marfan's, loeys-dietz, and others) have an echocardiogram as part of the work-up.

A mildly dilated aortic root may remain stable over time, and just be monitored periodically with an echocardiogram. In some cases additional testing and surgical repair may be indicated.

Reminder, Criterion 2 feature A includes 12 symptoms of a potential connective tissue disorder. You must have 5/12 to count this section.

Criterion 2 includes features A, B, & C. You must meet 2 of 3 (e.g. A+B, A+C, B+C, or A, B, & C) to meet criterion 2.

You also must meet Criterion 1 (hypermobility) and Criterion 3 (ruling out conditions that can look similar to hEDS)….see previous posts for more on these!

This post concludes the hEDS criterion 2 feature A series, if you missed some prior posts make sure to glance back through!

Questions, or something to add? feel free to drop a comment below.

~Tasha

~~~
💻 How to reach me? Check out the connect page of my website (linked in bio)

📍Location? I serve clients in Oregon, Washington state via telehealth.
~~~

05/21/2023

We're almost through all 12 items listed under Criterion 2 feature A section of the hEDS checklist, but here's second to last...

Unusually soft or velvety skin

This, of course, is subjective.

Does the skin look or feel soft or velvety?

Patients with soft or velvety skin have often had people previously comment on how their skin is very smooth or soft or that they look younger than their stated age.

Criterion 2 feature A of the Hypermobile Ehlers Danlos Syndrome (hEDS) criteria lists 12 potential symptoms of connective tissue disorders and you are required to have at least 5 symptoms to meet this section. We are looking at the overall picture, not isolated symptoms to determine appropriate diagnosis.

Questions, or something to add? feel free to drop a comment below.

~Tasha

~~~
💻 How to reach me? Check out the connect page of my website (linked in bio)

📍Location? I serve clients in Oregon, Washington state via telehealth.
~~~

05/21/2023

Another item under Criterion 2 feature A is "Mild skin hyperextensibility"

This just means stretchy skin, more than is typical.

In Hypermobile EDS the skin often only mildly stretchy.

Extremely stretchy skin is a sign it could be another type of EDS.

Skin on forearm that stretches 1.5 cm to 2 cm is considered "mildly hyperextensible" and greater than 2 cm is considered more severely hyperextensible, according to the Ehlers Danlos Society guidelines.

The neck, elbows, and knees must be at least 3 cm to be considered hyperextensible.

Criterion 2 feature A includes 12 symptoms of a potential connective tissue disorder. You must have 5/12 to count this section.

Criterion 2 includes features A, B, & C. You must meet 2 of 3 (e.g. A+B, A+C, B+C, or A, B, & C) to meet criterion 2.

You also must meet Criterion 1 (hypermobility) and Criterion 3 (ruling out conditions that can look similar to hEDS)….see previous posts for more on these!

Questions, or something to add? feel free to drop a comment below.

~Tasha

~~~
💻 How to reach me? Check out the connect page of my website (linked in bio)

📍Location? I serve clients in Oregon, Washington state via telehealth.
~~~

05/21/2023

Another part of the hEDS criterion 2 feature A is…

"Pelvic floor, re**al, and/or uterine prolapse in children, men, or nulliparous women without a history of morbid obesity or other known predisposing medical condition"

This criteria is not met if the person has a prolapse but it developed after significant weight gain or pregnancy.

This criteria item is challenging because many
have significant weight changes or pregnancy at a fairly young age before even having time to develop prolapse.

I would like to point out that while we may understand what they are going for with this one, the language used is not ideal or inclusive in regards to weight or gender.

Anyways…what exactly is a prolapse, it may still seem unclear…

Prolapse is when one or more organs in the pelvis (e.g. va**na, uterus, bladder and re**um) sag. In some cases, an organ bulges into another organ or outside of the body. This can happen related to connective tissue differences, such as in EDS/HSD and other connective tissue disorders, and due to weak muscles in the pelvic area.

Pelvic floor therapy can be a useful tool for some individuals with prolapse.

Pessaries can also be helpful in some cases to provide support, ease symptoms, and lessen progression of the prolapse.

And, in some cases surgery is performed to treat the prolapse.

Reminder, Criterion 2 feature A of the hEDS criteria lists 12 potential symptoms of connective tissue disorders and you are required to have at least 5 symptoms to meet this section. We are looking at the overall picture, not isolated symptoms to determine appropriate diagnosis.

Questions, or something to add? feel free to drop a comment below.

~Tasha

~~~
💻 How to reach me? Check out the connect page of my website (linked in bio)

📍Location? I serve clients in Oregon, Washington state via telehealth.
~~~

05/21/2023

Mitral valve prolapse.

This item is determined by having an echocardiogram, which is a type of ultrasound that looks at your heart.

Mitral valve prolapse is when the leaflets/ flaps that are supposed to tightly close to maintain proper flow of blood flip back into the chamber (atrium) above as the heart contracts. This means some blood may flows back (regurgitate) into the atrium instead of being all pushed onward through the aorta and to the rest of the body.

People with mitral valve prolapse typically have a heart murmur that can be heard with a stethoscope.

It’s important to know that many people have heart murmurs, but mitral valve prolapse is fairly uncommon. Just because you have a heart murmur doesn’t mean you have mitral valve prolapse.

Depending on the severity, some people with mitral valve prolapse may need the valve either repaired or replaced through surgery.

Reminder this is just one check point, Criterion 2 feature A includes 12 symptoms of a potential connective tissue disorder. You must have 5/12 to count this section.

Criterion 2 includes features A, B, & C. You must meet 2 of 3 (e.g. A+B, A+C, B+C, or A, B, & C) to meet criterion 2.

You also must meet Criterion 1 (hypermobility) and Criterion 3 (ruling out conditions that can look similar to hEDS)….see previous posts for more on these!

Any questions? Feel free to drop a comment below!

~Tasha

~~~
💻 How to reach me? Check out the connect page of my website (linked in bio)

📍Location? I serve clients in Oregon, Washington state via telehealth.
~~~

05/20/2023

Crowded teeth?

Teeth pulled due to crowding (including wisdom teeth)?

Palate expander?

Braces to help crowded teeth?

High arched palate?

Narrow palate?

This criteria is looking for BOTH:
Crowding
~And~
A high or narrow palate

Reminder, Criterion 2 feature A of the Hypermobile Ehlers Danlos Syndrome (hEDS) criteria lists 12 potential symptoms of connective tissue disorders and you are required to have at least 5 symptoms to meet this section. We are looking at the overall picture, not isolated symptoms to determine appropriate diagnosis.

Questions, or something to add? feel free to drop a comment below.

~Tasha

~~~
💻 How to reach me? Check out the connect page of my website (linked in bio)

📍Location? I serve clients in Oregon, Washington state via telehealth.
~~~

05/20/2023

Another part of the hEDS criteria is atrophic scarring.

These are thinned out, widened, or sunken in scars.

However, they aren’t as papery, and don’t have the same often very wrinkled appearance, as is seen in classical EDS.

Not everyone with hEDS has atrophic scarring, though in my experience the majority seem to have at least mild atrophic scarring.

Something that often comes up is, that “it doesn’t seem fair because I don’t even have any scars”…. True, someone without scars can’t meet this check box.

This is also an example of how blurry the line between HSD & hEDS is, and how someone’s diagnosis can change…

Example, someone doesn’t have any scars and scored 4/12 on criterion 2 feature A but otherwise meets hEDS criteria, they are diagnosed with HSD.

Then, two years later they have an injury and subsequently develop atrophic scarring. They now score 5/12 and would meet criterion 2 feature A so they now qualify for an hEDS diagnosis.

Did their condition change? No. It just took time to develop enough symptoms to be identified as hEDS.

Questions, or something to add? feel free to drop a comment below.

~Tasha

~~~
💻 How to reach me? Check out the connect page of my website (linked in bio)

📍Location? I serve clients in Oregon, Washington state via telehealth.
~~~

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http://www.creativethrivingllc.com/

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Updated my resource page today! You can check it out here: www.CreativeThrivingLLC.com/resources Caption for audio: “Hi, this is Tasha, and I just updated my Resource page on my website. So, if you are looking for resources and want to learn more about EDS, hypermobility, POTS, Mast cell activation syndrome, neurodivergence, autism, adhd, lgbtq+ healthcare…probably something else… some Journal articles, please check it out and let me know if you have something to add or if you have any feedback!” Video description: screenshot video scrolling through the resources page at www.CreativeThrivingLLC.com/resources ~~~ 💻 How to reach me? Check out the connect page of my website (linked in bio) 📍Location? I work with patients in Oregon, Washington state via telehealth. ~~~

Have you checked out my resource page yet? I’ve compiled some of my favorite resources that have been helpful to me on my personal & professional learning journey. [It was hard to narrow it down to just these!] I love connecting people to potentially helpful information and I love lists…I will update as I learn more 💗 ~Tasha ~~~ 💻 How to reach me? Check out the connect page of my website. 📍Location? I serve clients in Oregon, Washington state, & Indiana via telehealth. ~~~ [Image Description: video scrolling through the resource page at CreativeThrivingLLC.com/resources, no sound] #HealthCoach #NurseCoach #ChronicIllness #Neurodivergent #Autistic #ActuallyAutistic #ADHD #Neurodiversity #Disability #EhlersDanlosSyndrome #EDS #hEDS #MCAS #MastCellActivationSyndrome #POTS #Dysautonomia #Fibromyalgia #ChronicFatigue #CFS #LongCovid #MentalHealth #LGBTQ #CreativeThriving

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