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Guest Post: Making It As a Spoonie Girl Boss

It’s been a while since the Zebra Pit has added to our Disability and Work series. I enlisted the help of spoonie entrepreneur, graphic designer and blogger Kirsten, who owns Graphic Organic and works as a freelance graphic designer. Kirsten was kind enough to lay out a few of the things she found instrumental to building her business and discusses a little about how she manages the needs and constraints of her chronic illness with her work. Please help offer Kirsten a warm Zebra Pit welcome. I hope you enjoy her invaluable advice as much as I!

Kirsten of Graphic Organic details some of the things she found most instrumental in starting her own freelance career and walks you through a few excellent guidelines to follow when managing a business with your chronic illness to help make your girl boss dreams come true! Whether you want part-time income or a flourishing full-time + career, these tips are for you! Part of the Zebra Pit's Working with Chronic Illness Series.

Are you chronically ill and looking for ways to work from home? Did you have to give up your full-time job? Are you good at a specific skill? Do you have a lot of knowledge about a certain topic? Sounds familiar? Then keep on reading…

I’ve been running my business Graphic Organic for two years now. Graphic Organic is an online store with my own designs on sustainable clothing and stationery. I’m also a freelance graphic designer and I love writing articles for my blog.

I’m not an expert whatsoever, nor am I able to fully make a living with my business. I don’t have the secret ingredient for becoming a success overnight. I started out knowing nothing about the entrepreneur life. Graphic Organic is slowly growing every single day and so am I as a girl boss. I’m here to share my story of how I started my business and things I’ve learned so far.

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1. No matter how much you prepare you’re never ready, but it does help.

You will learn most things along the way. Even the most successful business person will tell you they find out new things every day. Owning a brand has its risks, no matter how good you prepare, you’ll realize soon you can’t control everything.

Nonetheless, I’m glad I did go to a business course before opening. I didn’t have many people close to me that are entrepreneurs and I had no idea where to begin.

In business class we studied the basics of marketing, insurances, laws, how to make an invoice, taxes, etc. I know some people make it seem “easy” online to start as an entrepreneur but a lot of them are technically doing things against the law. This doesn’t have to lead to serious problems now but it’s important to know your rights, especially as your company grows.

2. Invest, volunteer and support.

Kirsten spending time with a beloved companion.
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In order to grow your brand you have to be very passionate, otherwise you will give up in an early stage. Believe me, there have been multiple times when I wanted to just stop because I was so tired of working for free.

Every little money you earn goes needs to be reinvested into your business. Whether that is paying your suppliers, materials you need or your accountant. Advertising and promoting your business is not only hard work but also expensive. Running a business is so much more than the service or products you offer.

I know it sometimes feels like you are constantly giving and not receiving. Money will come into your life but you have to be patient.

Doing volunteer graphic design jobs have payed me in experience and more work to put on my portfolio. Thanks to the work I did for free, a client reached out to me because they liked my style.

Giving away products made people talk about my brand and therefore I gained new traffic to the site who subscribed to the newsletter or follow me on social media, which attracted them later on to actually purchase something.

Kirsten of Graphic Organic details some of the things she found most instrumental in starting her own freelance career and walks you through a few excellent guidelines to follow when managing a business with your chronic illness to help make your girl boss dreams come true! Whether you want part-time income or a flourishing full-time + career, these tips are for you! Part of the Zebra Pit's Working with Chronic Illness Series.

Another thing I noticed is supporting fellow entrepreneurs in your niche is so important. You know about yourself how many hours of work you put into your project, a super quick and easy thing to do is simply let someone know they’re doing a great job. Think about how it makes you feel when you get a compliment. Feels good right?

Why would you go to a supermarket with four floors for jam when your neighbour makes it themselves in a local establishment? If you don’t have money to spend now, you can easily support by just telling people about it, hang up a flyer, share on social media or a simple thumbs up and a nice comment help to gain followers.

Try to look at your business as something unique, even if people try to copy it, they can never be YOU. There is a place for everyone. Don’t look at it as much as a competition but a positive look and genuine support can help you a lot further.

3. Your health stays a priority.

Last but not least, your health should always be your first priority. My chronic illness is not going on a holiday when I’m in working mode. The chronic pain and fatigue is always with me. Even though we all know it can be so nice to just focus on something else and forget about being ill, it can be toxic too if you put self care at the bottom of your to-do list.

The freelance work I did has always been for someone who understands my health issues. They know that I have a slower pace than the average graphic designer and that sometimes I’m stuck in bed and it’s possible appointments have to be rescheduled. Strict deadlines are a no go for me.

This makes it a lot harder to find clients but I think it’s important to not promise anything you cannot realize.

When I receive an order, I give myself 1-3 business days to package the product(s) and bring the parcel(s) to the post office. That way I’m not getting stressed out when I’m having a flare.

I know all too well what it’s like feeling trapped in your body and wanting to do things because you feel so inspired but you can’t. “You can’t pour from an empty cup”. I’m working hard on planning in rest, just as I plan in work and activities.

I make mistakes and I’m gonna keep making them. But I’m growing as a business woman and as an individual too. Remember that taking care of yourself is a skill just as much as making jam is. 😉

Do you have a business yourself? Are you thinking of starting one? Let me know in the comments!


Kirsten is a graphic designer, blogger and the founder of Graphic Organic. She’s 23 years old and lives with fibromyalgia and M.E. To learn more about Kirsten, visit her website: https://www.graphic-organic.com

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10 Symptoms You May Experience With Fibromyalgia

Fibromyalgia is a tricky condition to live with as there are many symptoms you can experience beyond Pain and Fatigue. Here are 10 of the top symptoms you may experience and how to manage them.

Symptoms_of_fibromyalgia

Symptoms

1. Brain Fog

This is a cognitive impairment that causes problems such as temporary loss of memory, forgetting words or mixing up words, losing your train of thought, or saying things that don’t make sense. It can be frightening when it happens, as these are also signs of other conditions, such as Alzheimers Disease.

Your doctor can do some mental testing to make sure the symptoms you’re experiencing aren’t being caused by some other condition. Ways you can help yourself include keeping a notebook with you to write down important information, taking a moment to pause and collect your thoughts, and keeping a sense of humour about the situation. If you tend to panic about having this happen, laughing is a good way to keep things light while allowing you to start over with what you were saying.

2. Jaw Pain

Jaw pain in the joints on either one or both sides can be mistaken for TMJ (temporomandibular joint disfunction). Pain and swelling are the common symptoms of jaw pain along with stiffness and being unable to open the mouth without pain.

Gentle stretching exercises and muscle relaxants may be helpful in managing the pain. If only one side is affected, try chewing on the other side to relieve pain. If you hear popping or clicking, or if your jaw seems to be “out of joint”, see your dentist to rule out TMJ or other conditions.

3. Urinary Problems

If you are having difficulty with urinating, whether it’s a problem with urgency, leakage or straining, it’s good to check with your doctor to make sure there’s no underlying problem.

Having Fibromyalgia can affect the bladder and kidneys, causing the above symptoms. Some solutions include urinating on a schedule, doing Kegels, seeing a Pelvic Floor Physiotherapist, and using bladder control products for leakage issues.

4. Body Temperature

People with Fibromyalgia may have difficulty in regulating their body temperature. In my case, I can have cold skin and goosebumps, yet be sweating from overheating at the same time. It’s a very disconcerting feeling.

Things that may help include keeping a light blanket or sweater nearby for chills and a fan for when heat becomes a problem. I have found that keeping my feet warm helps with the chills and then using a fan helps ward off the sweating.

5. Weight Gain

There are over 60 symptoms of Fibromyalgia. Find out about the top 10, along with a few tips about how to treat them in this post.

Weight gain is often caused because of medications you may be taking for your Fibromyalgia. Even if you’re not taking prescriptions, you may find you’re still gaining weight – it’s one of the anomalies of having Fibro. The only way to lose weight is by taking in less calories than you are expending. Fad diets may work for a short period of time, but in general are unsustainable.

Following a proper eating plan from all 4 food groups is essential and exercise is as well. You may find walking helpful (consider using walking poles for extra stability) or water activities, such as Aquafit, Deep Water Workouts, or Pool Walking to be helpful.

6. Chest Pain

Chest pain can be a scary symptom of Fibromyalgia and should always be checked out by a medical professional if you experience the following:

  • Pressure, tightness, pain, or a squeezing or aching sensation in your chest or arms that may spread to your neck, jaw or back.
  • Nausea, indigestion, heartburn or abdominal pain.
  • Shortness of breath.
  • Cold sweat.
  • Fatigue.
  • Lightheadedness or sudden dizziness.

The cause of chest pain in Fibromyalgia is often because of something called Costochondritis, which is an inflammation of the cartilage around the ribs. The condition usually affects the cartilage where the upper ribs attach to the breastbone, or sternum, an area known as the costosternal joint or costosternal junction.

Treatment includes anti-inflammatory pain relievers such as Ibuprofen or Naproxen and using either heat or ice (which ever feels best for you).

7. Sleep Disorders

Pain can keep you from getting the sleep you need. You may also be experiencing Restless Leg Syndrome and not even be aware of it. Sleep Apnea is another problem that you may be facing and all of these issues can prevent you from getting the deep REM sleep that is necessary to repair the body.

Good sleep hygiene is important to follow. You may want to keep a notebook to jot down your thoughts when you wake at night to see if there is a pattern. Keep the room cool, avoid using electronics for one hour before bed, and try using a weighted blanket to see if that helps.

8. Digestive Problems

When you have Fibromyalgia, you may experience digestive disorders including nausea, vomiting, diarrhea or constipation (or occasionally both), heartburn and a general sense of feeling “unwell”.

Drinking peppermint tea can help with nausea, eating smaller more frequent meals might make a difference and trying to set up a schedule for bowel movements can help relieve discomfort. Metamucil or other Fibre supplements every day can be helpful for the bowels without resorting to laxatives.

If symptoms persist, see your doctor to rule out other potential problems.

9. Skin Problems

Itching, rashes, hives and tiny red marks can often show up when you have Fibromyalgia. Skin may become more sensitive to soaps and fragrances and you may discover that your normally dry skin has become oily or vice versa.

Use of a mild cleanser for face and body is imperative, especially ones containing oatmeal. Antihistimines are suggested when hives and itching become a problem and the tiny red marks that might show up on your skin are harmless.

If you have problems with skin rash, see your doctor who may recommend a dermatologist for further treatment.

10. Depression

Depression and Fibromyalgia may go hand in hand without you realizing you are showing signs. If you are finding yourself struggling to maintain interest in former activities, you’re isolating yourself, eating less or more than usual or have been unable to shake “the blues”, you may be experiencing Depression.

Treatment includes Cognitive Behavior Therapy (CBT) and often, medications. There is no shame to having Depression – you haven’t done anything wrong. You’re not weak, your body is showing signs of a chemical imbalance which should be treated like any other medical problem.

If you are feeling so depressed that you are suicidal, please call a hotline for help. You can find more information on hotlines here for Canada and here for the United States. In the UK, you can use this page for help.

Conclusion

There are over 60 different symptoms that relate to Fibromyalgia. These 10 are just the tip of the iceberg, but are the ones more commonly experienced.

Fibromyalgia is hard to explain

If you are experiencing something new, or if a symptom you’ve had for awhile changes, it’s always important to see your doctor, to rule out anything outside of Fibromyalgia. Better safe than sorry is certainly the key here. And remember…

There Is Always Hope


Resources and Further Reading


Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com.  She also writes for The Mighty,  PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC.  She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie. 

There are over 60 symptoms of Fibromyalgia. Find out about the top 10, along with a few tips about how to treat them in this post.
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Are Steroids Safe?

You don’t need to be part of the Ehlers-Danlos Dazzle for very long before you hear about the big bad collagen destroying wolf lurking in our common treatments known as steroids. It’s true; the medication used to reduce inflammation to help heal joint injuries and many other things can actually weaken healthy collagen. Of course, not all steroids are the same, and they don’t have the same effect on everyone. In this post we’ll discuss these differences, some possible alternatives to taking steroids when appropriate, and how to better protect your health and aid healing when taking steroids appears to be your only treatment option. 

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Steroids – Why, When and How

Someone in a lab coat writes on a clip board.
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Corticosteroids have both analgesic and anti-inflammatory properties, making them attractive for use in some of our most common health problems including asthma, allergic response, pain and inflammation caused by an injury or illness. They can also suppress the immune system and are often used to control flares in autoimmune disease.

There are many ways a doctor can dispense steroids. If you’re asthmatic, you probably take a steroid fairly regularly, either orally or through an inhaler. If you have a systemic infection or a flare-up of a chronic condition you can’t get out of, a doctor might prescribe an oral round of prednisone or administer a shot. If you tear your meniscus tendon in your right knee, the doctor could administer a localized injection in her office. You may also be administered corticosteroids in the event of an allergic reaction, which can be administered orally, by injection, through a corticosteroid inhaler or intramural spray or topically (1).

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Collagen and Steroids: Frenemies Forever?

A blue corticosteroid inhaler commonly used for asthma

If you’ve read recent news about the FDA’s new label warnings on epidural steroid injections, you know they’ve discovered a high incidence of injury occurring during/after these injections. In part, this is due to the location of the injections, which are placed directly into the spine’s soft tissues (4). A poorly placed injection could result in spinal injury including stroke, death or paralysis. But the locations of these injections is not the only thing that’s problematic about steroid use.

When a tendon is injured, steroids seem to do their job well and appear to be safe. It’s when they’re used on an uninjured tendon that they become problematic, actually causing a weakening of the tendon that makes it vulnerable to stress. In a 2011 study by Anthony S. Wei, MD, John J. Callaci, PhD, Dainius Juknelis, MD, et al a group of rats with healthy tendons were injected with corticosteroids. The healthy rats “showed an increase of >4.5-fold (p = 0.001) in the type-III to type-I collagen expression ratio, without structural injury to the tendon. This ratio returned to baseline levels by three weeks (1).” In other words, the rats’ tendons became weak and fragile.

In a second set of rats, Wei et al., created injuries in the tendons of another group of rats being studied prior to being administered localized injections of corticosteroids. The results? The corticosteroids worked as they should, bringing the inflammation down in the joint without altering the acute phase response. Wei’s summary of the experiment captures the overall results well: “A single dose of corticosteroid does not alter the acute phase response of an injured rotator cuff tendon in the rat. However, the same steroid dose in uninjured tendons initiates a short-term response equivalent to that of structural injury (1) .”

In confirmation of these findings, a study going back to 1986 also showed that mice on anabolic steroids were more inclined to tendon rupture when dosed, particularly when exercised (2). I find this terribly ironic when considering it’s been used as a sports enhancement drug for decades. Not many athletes are very  good with injured tendons. I can’t imagine what people are thinking when they take any form of steroid for “health improvement.”

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In 1998, the effects of inhaled corticosteroids (IC) on skin collagen synthesis and thickness in asthmatic patients was studied by K. Haapasaari, O. Rossi, J. Risteli, and A. Oikarinen. This study found that inhaled corticosteroids (IC) only decreased the collagen synthesis of skin and bone when combined with a round of oral steroids. In this study, patients were followed for two years. The patients taking only low to moderate dose IC showed no change in skin collagen synthesis or bone density over the two year period (3).

This is possibly due to the fact that the degradation and turnover of collagen slow down, so that the net amount of collagen remains relatively constant. This assumption is supported by numerous cell culture studies, which have shown that corticosteroids decrease the activities of matrix metalloproteinases, i.e. enzymes that degrade collagens. This could also explain partially why even a marked decrease in the de novo synthesis of collagen in soft tissues, including skin, did not result in a significant change in the amount of collagen (3).

The study goes on to recommend monitoring of the skin for patients taking both an IC and oral or injected doses combined while it notes this generally isn’t necessary for inhaler use alone, reinforcing the notion that the destructive nature of steroids on collagen is dose dependent.

Mushtaq and Ahmed agree in their assessment that dose and duration matter most to collagen disruption. In their discussion of glucocorticoid (GC) steroid use in children with chronic inflammatory conditions, they note that aggressive steroid use can lead to adverse growth and bone health. “Impairment of childhood growth with an approximate cortisone dose of 1.5 mg/kg/day was first described over 40 years ago; osteopenia in children receiving a prednisolone dose of less than 0.16 mg/kg/day has also been reported (5).

Loss of bone and deterioration in short term growth are dependent on the type and dose of GC and occur most prominently over the first six months of treatment. Although it is generally believed that GC affect trabecular bone more than cortical bone, a recent study of fractures in children following steroid exposure as part of acute lymphoblastic leukaemia (ALL) treatment showed a high incidence of cortical bone involvement, suggesting that the disease process may interact with GC usage in influencing site of bone loss (5).

There are many complex chemical changes that influence this slowing in growth. What’s most important here is that even in children, while it can slow growth for an initial period, it does not appear to last or affect growth or bone health long term.:

Photo by Linda Prebreza on Pexels.com

Although earlier studies did not show a relation between inhaled steroids and growth, there is now good evidence in children with relatively mild asthma that inhaled steroids can temporarily slow growth and alter bone and collagen turnover. The magnitude of this effect may be influenced by the dose delivery system as well as the systemic bioavailability of the inhaled steroid used. This effect may be most pronounced over the first few weeks of treatment. Long term studies are difficult due to a number of confounding factors including the plethora of drugs, delivery systems, compliance, and disease severity, but there is no clear evidence that final height is compromised following inhaled GC therapy in children with asthma. Studies of bone mineral density in children with asthma have not shown any significant abnormality but have only concentrated on those children who are on relatively low doses of inhaled steroids (5).

All of these studies say the same thing; the higher the dose, the more likely it is for steroids to cause changes in collagen formation, leaving soft tissues at risk of injury, but only in the short term. What I didn’t find was any study that said there were long-term deleterious effects in adults. In 2005, Cole and Schummacher reviewed injectable corticosteroids. Their findings:

Intra-articular corticosteroids are commonly used to treat osteoarthritis and inflammatory arthritis: meta-analyses confirm their benefit in reducing pain and symptoms. Intra-articular corticosteroid injections have been shown to be safe and effective for repeated use (every 3 months) for up to 2 years, with no joint space narrowing detected. Fewer clinical trials are available for extra-articular uses for injectable corticosteroids, although there is evidence of efficacy in a variety of soft-tissue conditions. The accuracy of injections affects outcomes. Postinjection flare, facial flushing, and skin and fat atrophy are the most common side effects. Systemic complications of injectable corticosteroids are rare (6).”

Despite all of this evidence, Mayo Clinic warns on their general article about steroids and their side effects that oral corticosteroids are most likely to cause significant side effects due to their affects on the entire body, but still warn that effects are largely dose dependent, but caution that long term use can cause osteoporosis and fractures and can thin the skin, cause bruising and impede wound healing (7).

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Steroids and Collagen Disorders

A person demonstrating hypermobility by bending their thumb until it touches their forearm.
This isn’t a party trick!

Collagen is a beautiful thing, when it works right. It is the glue that holds our bodies together. Not only is our skin, hair, muscle and connective tissue all comprised primarily of collagen, so too are our bones and organs. It’s perfectly logical to ask whether or not certain patients might be at greater risk for short and long term effects. Unfortunately, nobody’s bothered to try to find an answer.

In collagen disorders like Ehlers-Danlos Syndrome, Loeys-Dietz, Marfan Syndrome, Hypermobile Spectrum Disorders, and Joint Hypermobile Syndrome, the body manufactures collagen incorrectly in some way. Collagen synthesis can also be affected by mast cell degranulation. In some people with mast cell conditions (MCAD, MCAS, mastocytosis, etc.), the structural soft tissues of the body seem to function almost normally. In many, however, collagen is greatly affected by mast cell degranulation. For those who have both, like myself, the health of our collagen can fluctuate wildly based on how well our conditions are being treated, exposure to triggers, and so forth.

It makes sense we might be at greater risk when using steroids. We also have a greater need for them. So what’s the answer? Is it any more dangerous for bendy type zebras than the general population? I would love to know as much as you, but it’s never been studied! At least not that I could find. It’s disappointing, I know. Few things snap me out of a bad MCAS flare like a quick steroid injection, but I haven’t had one since I’ve been diagnosed with EDS.

I honestly thought this would be a very different post. There are many in the community who adamantly decry the use of steroids in our populations and probably for good reason. I’d imagine many of us get hurt inside of that three week window. But are we giving up on something that might be really useful and without long term side effects?

To Steroid or Not to Steroid, That is the Question

We won’t have definitive answers until someone decides it’s important enough to study. Of course we want to be safe, but we also need to be practical. First, there are times when corticosteroid use is life saving and pretty much the only answer. In this case, of course you should always just say yes to drugs. An injured zebra is much better than a dead one.

how I react to adhesives
Fun with Cathode Tape

In the case of topical steroids (hydrocortisone), they thin the skin and while I couldn’t find anything that states it, my understanding is that corticosteriods are often used in dermatology to break down scar tissue because it works so well. Obviously, you want to use these creams sparingly and give your skin plenty of time to heal before using them again. I use this cream myself from time to time because with reactions like this, benadryl just doesn’t cut it:

If you have to use an inhaler for asthma and/or allergic reaction, every study I read pointed to these being quite safe so long as the dose is low and you don’t overuse them. I myself use an inhaler and feel a bit better about using it now that I’ve done this research.

It’s hard to know what’s right for sure as a zebra, but I came up with this list of 9 ways in which you can protect yourself when facing the option to use steroids, including some alternative natural anti-inflammatory substances that one might consider before opting for steroids:

Ways To Protect Yourself During Steriod Use

Then I gathered this list from those white coat fellows over at Mayo Clinic. The article this was taken from was written by clinic staff and provides a good overview of ALL of the possible side effects when taking steroids, not just those involving collagen structures (7).

It would be nice if I could have wrapped this article up with a firm answer about the effects of steroid use in our community. It’s impossible to tell how steroids might affect us over healthy populations or even against people with different forms of chronic illness because of the lack of collagen involvement in those conditions. Given the usefulness of these drugs, My personal choice is to continue to use them sparingly and with a great deal of respect for their power. Be sure if you do need to take steroids, you do everything you possibly can to protect yourself!

  1. The Effect of Corticosteroid on Collagen Expression in Injured Rotator Cuff Tendon
  2. Organisation of collagen fibrils in tendon: changes induced by an anabolic steroid. I. Functional and ultrastructural studies.
  3. Effects of long-term inhaled corticosteroids on skin collagen synthesis and thickness in asthmatic patients
  4. FDA’s new label warnings on epidural steroid injections
  5. The Impact of Corticosteroids on Growth and Bone Health
  6. Injectible Corticosteroids in Modern Practice
  7.  Prednisone and other corticosteroids
A pinterest image with overlay text.  In the background, syringes with orange plungers can be seen behind a golden filter. The text says "Are steroids safe? These days, there are many different steroid types and delivery systems. It's hard to know for sure we're making the best choice. get the scoop on steroids, how they affect joint and bone health, & how to protect yourself when taking them.
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10 Great Articles Promoting ASD Acceptance

Autism, #redinstead, ASD, Awareness month

I wanted to take a moment to post some of my very favorite blog posts, articles and social media findings I’ve come across while reading up on autism and trying to decide whether the diagnosis fits me for sure, along with a few posts about April, which is traditionally Autism awareness month. I learn a lot from these articles, mostly that I am a lot more like other autistic women than I ever imaged just a few short months ago.

Autism is important in my home every month, not just awareness months. In general I’ve never really approved of the tone of awareness month and don’t participate much. I’ve never covered it on the Zebra Pit because the whole point behind the blog is to share my personal experiences and knowledge about my own healthcare concerns and I didn’t come to suspect autism was part of that picture until late last year. While my stepson was diagnosed with aspergers at the age of 4, I would never try to speak for him.

As an autism parent, I couldn’t possibly try to set some example for other autism moms, either. I didn’t even meet Ty until he was almost 10 and while we’ve had a pretty good relationship, we’ve had our difficulties, too. I share responsibility in some of the hardest times in his formative years because while I attempted to educate myself on autism, I didn’t read enough or make all the right reading choices. I’m also human. We make mistakes.

Perhaps more surprising than an autism mom not feeling like she’s qualified to hand out advice is the fact that I had Ty in my life all those years and never once questioned if I might be autistic myself. This is, unless you realize just how differently it presents in women, not to mention one person to the next. It’s not that I was being obtuse or even lack self-insight; it’s that I had no idea what to look for in a female.

I was pretty nervous about telling Ty I suspected I was autistic and awaiting an appointment for evaluation. I half expected him to yell at me and ask me how I could have been so stupid and insensitive by pushing him too hard academically if I knew what it was that he was going through. Instead, he thought about it a moment, smiled and said “I might have guessed that. It makes a lot of sense, actually.”

Now that I’m aware of my own place on the spectrum, I feel strongly about covering ASD topics and news at the Zebra Pit. I hope to attract some autistic authors to contribute to our knowledge base, while I’ll probably focus a lot on women’s diagnosis, news and research until I am formally diagnosed. As promised, here are some of my favorite articles and posts about Autism:

  1. TheAspergian: 10 Things Autistic People Wished You Knew about April & “Autism Awareness Month” – This is a great post that examines the problems with awareness month historically and provides some alternative ways that actually supports autistics.
  2. Stim the Line: 5 Signs You May Be Experiencing Burnout – A great post that talks about Autistic burnout and how to recognize the signs (boy did I recognize this cycle in my life and wonder if it’s the culprit of my early fluctuations in health),
  3. The Autism-Expert Spectrum – This intriguing post talks about the problem of diagnosis and snap judgements based on a single, brief meeting. I wouldn’t know anything about that.
  4. Study Shows the Therapeutic Effects of Marijuana on Autistic Children– MMJ use to combat the symptoms of Autism? Yep!
  5. The Search for a Biomarker for Early Autism Diagnosis – This NYT article discusses the search for a biomarker and how much better outcomes are for Autistic people when diagnosed and treated as early as possible.
  6. For lawyers with autism, the work often pairs up with things they do well – This ABA Journal article exemplifies the many ways autistic people can thrive in fields like law and some of the ways autistic lawyers work around their known communication issues.
  7. I’m A Female, Autistic Lawyer, & Every Day I Have To Counter These Stereotypes – Good article about the breadth of symptoms and presentation in autistic people being much more diverse than the daily stereotypes one female autistic lawyer comes up against.
  8. “You’re Just Kooky”: Women Who Were Diagnosed With Autism Later In Life – Not at all difficult for an undiagnosed or newly diagnosed autistic woman to cuddle up with this piece!
  9. An Interview With the Creators of CAMOUFLAGE: THE HIDDEN LIVES OF AUTISTIC WOMEN – Really looking forward to reading (and possibly reviewing) this book.
  10. ADVENTIST LA GRANGE MEMORIAL HOSPITAL: Why Autism in Girls Is Often Missed Until Adulthood – Another article recently released on underdiagnosis of Autism in women.

And here’s a bonus from Social Media that I really fell in love with:

This image and text below were shared by a friend on FB:


WHY WE DON’T LIGHT IT UP BLUE
It’s that time of year again when puzzle pieces abound and well-meaning people go blue because they believe they are doing their part in helping autistic people and their families.
Autistics are asking everyone to please stop. But there’s still something you can do to be involved in a respectful and positive campaign.
Anyone with ears to the ground in autistic spaces is hearing an onslaught of frustration, sadness and anger in the build up to this time. Autism Speaks, the initiator of the blue “awareness” campaign, is almost universally despised by autistic people. There are literally hundreds of articles and blog posts one could look up to learn more about that. Autism Speaks and “awareness” campaigns treat autistics as a group to mourn, their families as champions of living with the “burden” of autism, they use fear mongering “epidemic” speak, which defines disease, not neurological difference. They use the puzzle piece to denote a mystery and something missing. Their imagery denies there is a whole, complete child right before you, and furthers the harmful myth of a child who is less than human and can’t be reached, or who is hidden ‘underneath’ their autism…unaware of the world around them, unaware of how you are speaking about them. This is offensive. This is damaging. This is false.
Imagine being an autistic person and how unwelcome you feel this time of year when everyone is lighting it up blue to talk about the tragedy of autism, of your existence, to pity you and pat your martyr families on the back for living with autism…with…you. Disabled people do not want your pity and they certainly find it offensive and damaging to praise and pity families burdened by them. Imagine a month where everywhere you go there is the message to raise funds to “combat” autism, that is, find a cure; a cure to rid the world of autism…of…you. What’s more, the fear mongering and cure culture propagated by Autism Speaks has translated into quack cures that abuse and have even killed autistic children, because parents are desperate to extract the tragedy of autism from their child. Imagine what a culture of acceptance would bring instead.
Somehow World Down Syndrome Day is a fully fleshed out celebration of pride and joy and inclusion. How are we still stuck in the pity and oppression of approaching Autism Awareness Month like it’s a cancer awareness month? Can you imagine when that campaign is about YOU?
Autism Speaks and awareness campaigns also primarily focus on children, as if autistic children don’t grow up to be autistic adults. But they do. And while they are systematically forgotten, or worse, actively silenced, they are a growing force and they have something to say. Their words of resistance and pride are starting to break through. Autistics are asking you for ACCEPTANCE. Autistics are asking for inclusion, friendship, support and respect.
CHANGING TO A NEURODIVERSITY PARADIGM
Autistics are trying to steal away the campaign and re-appropriate it into something autism-positive by suggesting #REDinstead and #LightItUpGold for Autism ACCEPTANCE Month. If you would like to support autistic people you can listen to autistic voices. It is their right to lead the conversation.
The image below is a terrific cheat sheet to understand the difference between the traditional awareness campaign and a positive acceptance campaign.
A few more things autistics would like people to know…
Most autistics prefer identity-first language. (I AM autistic, rather than I have autism, or am a person with autism.) But a person should be called whatever they prefer to be called. It’s up to them.
Most autistics would like people to stop using functioning labels. They note that “high functioning” can denote a hierarchy in value, and is often used to deny accommodations and necessary services, and “low functioning” is disrespectful and used to strip people of their rights and presumed competence. An individual’s “functioning” also varies greatly over years, and even throughout any day and from task to task. It’s an oversimplification of an outsider’s assumptions about functioning day to day as an autistic, with potentially grave consequences.
Great sources to learn about autism from autistics (I have dozens more for anyone interested):
ASAN (Autistic Self Advocacy Network) https://autisticadvocacy.org
AWN (Autism Women’s Network) https://autismwomensnetwork.org
Thinking Person’s Guide to Autism www.thinkingautismguide.com
Being autistic is not all roses all of the time, but it’s a hell of a lot harder when people try to change who you are or pity your existence. Pay attention to the language used. My daughter needs me to make this world a better place for her, and she needs her mother to be positive about her life, and our life, and she needs to be embraced for exactly who she is and celebrated. All children need that. We have an amazing autistic daughter whom the world needs to accept because if they don’t they will miss the opportunity to be better together.
[image credit: MissLunaRose]

from ZP: Women, Autism and the Issues of Diagnosis


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23 Tips for FasciaBlasting with EDS and FMS

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Formerly part of Fascia Treatments for EDS and Fibromyalgia, which I decided to update and separate into two posts, this one now focuses solely on my tips for blasting with Ehlers-Danlos Syndrome and/or Fibromyalgia. Truth be told, the use of the FasciaBlaster is trending toward a much broader use than collagen disorders, but since EDS and fibromyalgia are diagnoses I have along with many others, I can only speak specifically to what it’s like to blast with this type of body, so I’m not really giving advice to those with say lupus or RA who blast. However, there is a group on Facebook you can go to for advice with these conditions, called Health Support for FasciaBlasting (Women Only).

I also want to note right up front so it’s clear that I DO NOT RECOMMEND FASCIABLASTING FOR vEDS, cEDS or any form of EDS that carries a high risk of arterial rupture. It is also not recommended for people on blood thinners or who have a history of blood clots (Ashley Black Guru FAQ). That’s because fasciablasting causes extensive bruising and trauma. Before Blasting, it’s also a good idea to speak with your doctor about any possible side effects for your health conditions to ensure your safety.

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Getting Started

To get started, here are the 29 fascia blasting zones along with the basic dos and don’ts and a full body tutorial where Ashley Black tells you how to do your treatments. I highly recommend you read through this information to ensure your own safety and proper practice! Below are a few personalized tips for zebras and spoonies I have compiled from my own personal experience:

  1. FasciaBlasting Improvements
    If at first you don’t have the strength to blast on your own, have someone do it for you. My husband still helps me with hard to reach areas or if I’m in a bad flare and simply don’t have the spoons. Do what you can, though. It can provide a good work out for little used muscles and will help you build some strength. I started my treatments while I was still bedbound and it really helped get me moving again.
  2. Your first several treatments will release a lot of knotted fascia, which naturally means your body will have to rid itself of a lot of toxins. Limit these treatments by going fast, but applying only light pressure and only doing your body in sections. Staying light helps you keep from breaking through too many layers at once and not doing your entire body all at once should help with toxic load as well.
  3. Never work an area of your body that’s still sore and bruised (and if you’re doing it right, you will bruise about every time! Healing time is essential!!
  4. Give your body ample time to heal. Watch your weight. It will likely go up because of inflammation from the treatment and back down once you have healed. I cannot stress enough to go light, especially if you have EDS, as bruising and reactions can be pretty heavy in our population!
  5. Avoid dislocations and other injuries by allowing someone to help you with hard to reach areas or try modifying your full-size blaster using 1 in 90 electrical conduction pipes (found at your local hardware store for around $2)
    1in90
  6. If you have issues with grip, the Mini2 may be a better option for you and always treat your hands and wrists at the end of your other treatments to relieve them of pain. The FaceBlaster is best for this and can help resolve issues with carpal tunnel, trigger finger, dislocations, etc.
  7. Be sure your skin is well oiled. I use unrefined coconut oil or grapeseed oil in excess so my skin can’t soak it all up. You can also order oil from the site, but Coconut oil is my preference since it’s healthy, natural and my skin is super-sensitive.
  8. Rub hard enough to be effective, but don’t hurt yourself. Ashley Black says you should never experience pain over a 7, but for us it should be more like a 3 or 4 with only occasional spikes of higher pain. As people who suffer chronic pain, our pain meters may be a bit off, so don’t go crazy and adjust down a little. If you can feel the pop of the fascia releasing under your skin, you’re pressing hard enough.
  9. If you don’t have the energy for a warm up and/or you’re heat sensitive, try a heating pad for a few minutes prior to treatment or do it as part of your bath if you can. If you’re so heat intolerant you can’t even bear a heating pad, IT IS ACCEPTABLE TO BLAST WITHOUT HEAT. When starting out, I just laid under my comforter for a while to warm up and I made good progress. I wasn’t even exercising because blasting used all the energy I had. After a few months, heating became more important to moving my progress forward,  but by then my heat intolerance had improved enough that I could handle the heating pad and by 7 months I could blast in a hot shower… me, a POTSie!
  10. Muscle warming and post-activation help make blasting more effective, but you don’t have to do an extensive “workout” to accomplish this goal. Just squeeze the muscle a few times, blast, flush and activate the muscle once or twice by squeezing again. Add on more as you get the energy to do so. Before you know it, you’re doing a whole work out routine.
  11. Conserve your energy. Work one area of your body a day or every couple of days. For example, starting out I did my calves one day, my thighs 2 days after, my stomach 2 days after that and so on. Sometimes I had to take a few days in between because I just didn’t have the energy. Don’t feel bad about it. It’s a journey and you’re not going to win the war against your fascia in one day or even one month. Frankly, it’s a maintenance thing and we have to be in it for the long haul. Dysfunctional connective tissue means dysfunctional fascia. It’s always going to be a problem, though eventually you have to do it a whole lot less!
  12. If working on a particular issue, be sure to look for advice and tutorials among Ashley Black’s vast collection. Doing only the affected area is rarely enough, due to the interconnected nature of fascia; it’s one giant network throughout the body (see my fasciablasting resources, linked below).
  13. Blasting your head can sometimes produce a sensation of nausea, especially if you have a lot of myofascial adhesions on your skull. This passes quickly when you stop blasting. Try moving to another portion of the head to quell the feeling and then going back, working a little at a time as you can tolerate it. As the fascia uncoil and improve, you’ll no longer experience this sensation when blasting. It took me a couple of months before it ceased completely.
  14. FasciaBlasting Improvements 2
    If you’re doing the migraine series, use a FaceBlaster. A blaster with full-sized claws works, but it’s like the difference between a 1 hour massage from an expert (the FaceBlaster) and a 10 minute massage from your spouse. They’re both amazing tools, but they have their specific uses. The migraine series is one area where tiny claws cannot be beat.
  15. Never fasciablast your carotid artery.
  16. Always drink lots of water to help release toxins after blasting.
  17. Take occasional breaks of 3-5 days to allow your body to heal and rest, but not too long. You don’t want to delay your progress!
  18. Do use your fasciablaster on your fibromyalgia tenderpoints and any CRPS knots or adhesions. It will hurt like hell, but you will find that they become less and less tender and some will even disappear. Most of these tender points are likely fascial adhesions that need to be worked out. I believe they are caused by our lax tendons based on their locations.
  19. Concentrate on sore spots and muscles that cramp frequently when blasting. This tends to indicate fascia bundles that are particularly resistant and the poke and wiggle technique helps to alleviate cramping and break them up (that’s what the pointy ends of the Mini 2 and the nuggets are for). You can even feel lumpy adhesions shaped like balls and ridges once you begin to break through areas that are beyond bound.
  20. Be stringent in your practice to begin. Once you’ve established a routine, you’ll find that returning aches and how much better you feel from regular treatments will naturally keep you diligent about your practice. Once you start feeling really good, you may need to work by a calendar to stay that way!
  21. Read through Ashley Black’s blogs including how to’s, warnings, advice, etc to ensure you use it safely and effectively and consider joining a group of other people with your same condition so you have support and can ask questions.
  22. To help with post-blasting pain, use ice or an ice bath the day of along with some arnica or another topical analgesic like biofreeze or AloeMD. A day or two later, you can soak in a tub of hot water with some epsom salts, which can help reduce bruising some.
  23. Protect your joints by strengthening your muscles. Sometimes as we loosen fascia we see fewer subluxations and dislocations. Some of us see more. This all depends on the strength of your muscles and their ability to support your hypermobile joints. We must build strong muscle to support our weak connective tissue so our fascia isn’t work so hard. See my article on EDS and exercise for some tips and styles of safe exercise.

If you decide to take on this therapy, please contact me and let me know how it’s going. I’m excited to hear from you!

For more information, tips, and resources, check out these articles on FasciaBlasting:

23 Tips for FasciaBlasting with EDS & FMS
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