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Did you know that rare diseases aren’t really rare at all? 1 in 10 Americans has a rare disease! A rare disease or condition is one that is seen in fewer than 200,000 Americans (or 2,000 Europeans). Rare disease is difficult to diagnose, and patients may wait a long time for answers. Even when a diagnosis is reached, most rare diseases are genetic, and have no FDA approved treatment or cure. World Rare Disease Day (the last day of February of each year) is a time for rare disease patients and their loved ones to come together in order to be heard as one group, recognize our commonalities, and advocate and raise awareness together.

My Rare Conditions:

  • Ehlers-Danlos Syndromes (EDS) – A group of genetic diseases of the connective tissue that causes widespread instability and pain throughout the body. My type of EDS, Hypermobile EDS (hEDS) is rarely diagnosed, but it is not believed to be rare at all. Although I have it all of my life, my EDS was not diagnosed until two years ago, when I was 28 yrs old. For me, it causes widespread pain and successeptibly to a number of other less rare, but equally difficult illnesses such as Dysautonomia, Functional and Eosonophilic GI conditions, Hip Dysplasia, and Mast Cell Activation Syndrome.
  • Hemiplegic Migraine – A rare type of migraine that can either be hereditary (Familial Hemiplegic Migraine) or it can occur spontaneously (Sporadic Hemiplegic Migraine). People with Hemiplegic Migraine experience symptoms such as one-sided numbness and weakness that mimic a stroke. They may experience other prolonged aura symptoms, or have symptoms of meningitis (without the infection). Impaired consciousness and ataxia (decreased muscle coordination) are also common during an attack. People with HM generally also have more classic migraine symptoms such as headpain, nausea/vomiting, and sensitivity to noise and sound. I’m sure as you can imagine, HM can be very scary for patients and loved ones alike.

I also likely have:

  • Eosonophilic Esophagitis (EOE) – EOE is a condition in which a high number of particular white blood cells are present in the esophagus (the tube that carries food from your mouth to your stomach), causing inflammation. Symptoms vary, but can include difficulty swallowing, food impaction, nausea, vomiting, and losing weight unintentionally or failure to thrive in babies and children. The condition is more common in males and people with connective tissue disorders. Eosonophilic conditions can impact other parts of the digestive system as well.

I am lucky that while is no cure for Hypermobile Ehlers-Danlos Syndrome, Hemiplegic Migraine, or EOE, they generally are not life threatening conditions, and have some treatment available. Many rare disease patients face an illness that will be life limiting (including Vascular Ehlers-Danlos Syndrome patients), with no treatment available. That is why Rare Disease Day is so important!

Get Involved:

There are many ways to get involved, from joining the conversation on social media, to advocating on capitol hill.

  • Wear Blue Jeans (or a #Jeans4Genes Ribbon) to show that you care on 2/28/2017
  • Find Local Events
  • Join the #ShowYourRare Campaign by posting a picture of you with your face painted to Show Your Rare, Show you Care with the hashtags #ShowYourRare of #MyRare
  • Join The Rare Action Network (If you are in the US)
  • Use hashtags like #WorldRareDiseaseDay #RareDiseaseDay #WRDD18 #CareAboutRare #MyRare #RARE #raredisease #Jeans4Genes and #GlobalGenes on social media

Rare Disease Resources:

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Oh 2017, I have to say that I am happy to see you go. Still, I’m grateful for the lessons you left me with, and that’s the point, isn’t it? The gratitude is so much more important than whether or not things went as you imagined they would.

I think so many people have yet to figure that out. I see so many posts tagged #LifeByDesign. I see your beautiful babies, and brand new homes in the attached photos and I couldn’t be happier for you, but I also can’t help but laugh because you don’t get it yet. It’s not your fault, life just hasn’t thrown you yet. Don’t worry, it will. When it does, it will seem all negative at first, and then eventually you will realize that you don’t need to be in control to be grateful for the things in your life, exactly as messy as it is right now, that are beautiful just the way they are. The things you never would have known if your life continued on as “perfectly,” whatever that means.

Pretty much nothing in my life is how I had imagined it would be at 30; From my health, to my work, to the size of my family. This year has served to teach me once and for all that we don’t have control over what happens. You should know that when I’m saying this I’m not complaining; I’m also not saying it’s easy. A lot of days I am a complete ball of anxiety about the many uncertainties in my life right now. I am learning that that’s ok, but that it’s also important to recognize that this life on hold, is still life afterall. I didn’t choose the uncertainty, but I can choose my response to it.

In 2018, I’m choosing gratitude. No my life is NOT by design, but my god there are so many incredible and beautiful things about my life exactly as it is in this moment to be grateful for. I have an incredible husband who has been my rock through this year, and who I know will continue to be that steadying presence in my life. I have an extended family that has shown that they will support me in all of my endeavors, no matter how difficult the undertaking. I have made so many amazing friends this year, friends that are zebras like me, friends I never would have met if I was healthy.

Do I hope that 2018 will bring a little bit of clarity, and a little less uncertainty? Of course, I do! But, in the meantime, there’s so much to be grateful for. My life is beautiful and valid just the way it is right now, and so is yours.

So, my biggest lesson from 2018? That #LivingGratitude is far more important than #LifeByDesign will ever be.

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August is Gastroparesis (GP) Awareness Month, and so I want to allow a friend who live with both Ehlers-Danlos and Gastroparesis to share a little about their lives with GP, and how it affects her individually. First I’ll give a little introduction about the condition and how it relates to EDS.

What is Gastroparesis?

Gastroparesis is literally translated as paralysis of the stomach, but is a functional GI disorder that occurs (for a variety of reasons) when the stomach (and often other regions of the GI tract) can no longer empty properly. Symptoms include: feeling full after eating small amounts of food, nausea, vomiting (especially undigested food), reflux, abdominal pain and bloating.

How does Gastroparesis relate to EDS?

Gastroparesis is considered to be a rare condition among the general public, but is likely underdiagnosed. It is more common among people with certain conditions including: Diabetes, Parkinson’s Disease, connective tissue disorders such as EDS and Dysautonomia/Autonomic Dysfunction (another comorbidity of EDS). In the case of EDS faulty collagen, structural abnormalities, and autonomic dysfunction are likely to be contributing factors.

Gastrointestinal complications of EDS are: common, potentially disabling, well documented in the existing literature, (and) underappreciated by clinicians. (Collins, 2014)

Hannah’s Story

My name is Hannah and I am an animator finishing my last quarter in college. I have been disabled most of my adult life. Alongside of GP, I have Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Idiopathic Intracranial Hypertension, and a few other things to add onto the list.

I have had stomach trouble since I was a baby. I had GERD and it would disrupt my sleep.  It my reflux didn’t get bad enough to need medicine until I was in college in 2014 and I was under more stress and eating a different diet than normal.  I was living with some family friends and they ate more acidic foods than I was used to.  2015 is when I first started having my GP symptoms and I eventually had to quit my job.  For a while my GP went into remission and a stomach virus in 2017 kicked it back into full gear.  It took until this year, 2017 for me to be diagnosed.  This came 5 years after my EDS diagnosis.

When I was diagnosed, I had stomach pain both in general and upon eating/drinking.  This comes with early satiety in the meal.  My stomach would distend as well.  I get awful belching almost all the time, especially when there is anything in my stomach.  One of the earliest symptoms I had was the reflux and regurgitation.

I am blessed to be one of the few GPers to have not had the experience to have an inpatient stay. My GP is moderate-severe, but it has not gotten bad enough to where my GI doctor cannot manage it from the office.

Currently, my nutrition comes from a combination of solid foods, ensure/boost, and some blended foods.  I mainly eat soft foods and very small portions.  What I can get in a day equals to roughly 500 calories.  I will be getting a G tube this month to change my situation so that my body can receive the nutrition it needs.

The only medications I take for GP are omeprozol to manage the reflux and regurgitation and I also have a Port-a-Cath to do daily infusions of saline to keep myself hydrated since I cannot take in enough fluids orally.  So far, I notice a difference in my POTS management since getting my fluids.

There are many facets to the difficulties of being so sick.  I can’t eat what I used to, and the food that used to bring me great joy now just brings me pain.  Your body goes into survival mode and wants to eat as much as possible because it doesn’t know when its next meal is, and you can’t control any of this and you end up feeling so guilty and shameful about it all.  It’s not an instinct to suppress your hunger like this. With EDS, I’m used to there being ups and downs to my illness, but with GP, it seems to be so constant and relentless.

I want people to know that it is not ok to make fun of someone because of their medical equipment, disability, or just because they look thin, fat, or what have you.  Nothing is more hurtful that hearing others judgmentally say, “you must be anorexic” when in all actuality, it is a very real medical condition we cannot control.  It’s horrible to hear friends say that about others when you are sitting there with them and you have to wonder, what the heck do they say about me then?  Just a bit of compassion needs to be used, not only with those with GP, but those with disabilities. Nothing is worse than hateful statements that come from friends, family members, and strangers.

I’ve learned that it is completely and totally ok to say no to someone when they want you to do something or they are making plans. You make plans based on how your body feels, not based on what they want to do.

Sources:

Collins, H. A., MD. (2014, September). Gastrointestinal Complications of Ehlers-Danlos Syndrome. In EDNF Physicians Conference . Retrieved August 19, 2017, from https://ehlers-danlos.com/2014-physicians-conference/Collins.pdf

G-PACT. (2015). Gastroparesis. Retrieved August 19, 2017, from https://www.g-pact.org/gastroparesis

National Organization for Rare Disorders (NORD). (2012). Gastroparesis. Retrieved August 19, 2017, from https://rarediseases.org/rare-diseases/gastroparesis/

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This week I’m recovering from a recent trip to Oregon. I went out there to visit with family, attend an important event, and spend some time on the coast enjoying the vacation. This trip was unique to any others that I have taken in at least the last five years, because I didn’t have my husband, J, or any other family members with me to act as my personal disability assistance/pack mule (whatever you want to call it) while traveling. He usually takes care of ALL of our luggage so that I can walk, because he’s sweet like that. I realized when considering that the length of my trip (from Ohio to Oregon), and the fact that I would have a connection – and not much time to make it in, that I would need some help in order to make it safely to my destination in one piece. I decided to learn more about and seek out disability assistance based on the the above info, and the following: My head and neck pain have been increasing lately, and it’s impossible to predict whether the day I am scheduled to travel will be a good day. I’ve also been having more falls. Falling in familiar places isn’t fun, but absolutely no one wants to fall in public. It’s the worst – just take my word for it, and don’t do it.

Once I decided to look into what assistance was available, I began to research. I only looked at domestic travel (In the US) in my research because I wasn’t planning to travel internationally although I know the laws vary from country when international travel is involved. I was surprised to learn that in the US, air travel is not regulated by The Americans with Disabilities Act, but rather the Air Carrier Access Act (ACAA). The act prohibits air carriers from discriminating against people with disabilities, and requires that they provide reasonable accommodations. The act also ensures that terminals are accessible, passengers are provided with assistance through the airport and with boarding if needed, and service dogs are accommodated free of charge. Some important points that I learned about the ACAA are that disabled passengers generally cannot be required to provide “proof” of their disability. They may be asked to provide clearance to travel from a physician if the crew is concerned that they are not healthy enough to fly.  Advance notice of your plans to travel and request assistance is not required in most cases (but is probably a good idea to make sure that you get what you need).  Some exceptions include when: ten or more passengers with a disability are traveling together, transporting an electric wheelchair or scooter, the passenger will be bringing a service dog on a flight longer than 8 hrs in duration, or the passenger will be traveling with an emotional/psychiatric support animal.

After reading up, I decided to talk with friends in my local EDS support group in order to get practical information and pointers from people who have used wheelchair assistance and other accommodations while traveling. Here is some of the best advice they gave!

  • Call ahead to each airport to make sure that a wheelchair will be available in each location. Even though it’s not legally required, this will help prevent mix ups and ensure that you get what you need in a timely fashion. Because I flew Southwest, I was able to request accommodations online when I booked my flights, but I still went ahead and followed up with a phone call.
  • Pack snacks and an empty water bottle in your carry-on. This will come in handy if you are running short on time. I also just like having familiar food that I know is “safe” when it comes to my dietary limitations on hand. The water bottle can be filled once you get through security.
  • The airlines cannot count a medical device (such as a CPAP, bipap, oxygen etc..) as a carry-on. If you pack a bag that is only medications and/or medical supplies, this also cannot be counted. They also cannot charge you to check these items.
  • Bring small bills to tip your wheelchair attendants. This is NOT required by any means, but is appreciated.

When I got to the airport for my trip, I arrived early to allow for plenty of time navigating a system that I’m not yet accustomed to. I checked in and the desk to find that my boarding pass was labeled for pre-boarding and wheelchair assistance, and everything was in order. An attendant took me through security, and to my gate. At each connection a destination a wheelchair was also waiting for me. All in all, I had a really good experience. I do not think I would have made my connection on the way there without the help. Airline and airport employees were nice, although one of the attendants on the way home did ask, “What happened to you?” I laughed and told her that “I was born” and then explained a little about EDS. I know that she should not have asked, but I also know that most younger people who use wheelchair assistance probably did have some sort of accident or injury.

If you have traveled using disability accommodations in the US (or elsewhere) and have tips, tricks, or comments about your experience, please feel free to share! Also feel free to share if you have experience using accommodations for a different disability or need.

When I first booked the travel, I felt a little defeated. Once I got to my destination without any hiccups and with much less pain than traveling usually causes me, I felt nothing but gratitude. I realized that the assistance was helping me to be more independent, and it got me to the beach, so It was definitely worth it.

Sources: 

United States, Department of Transportation. (2009, August). New Horizons: Information for the Air Traveler with a Disability. Retrieved July 31, 2017, from https://www.transportation.gov/sites/dot.gov/files/docs/Horizons_2009_Final_0.pdf

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I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in now way influenced by the company.

I once heard EDS described as living the day after a car accident in perpetuity. This is an excellent description of what it’s like to live with the condition, as each day you wake exhausted and sore, in a bit of a daze. As you stretch your body, you pop any misaligned joints back into place (snap, crackle, pop), and assess yourself for acute injuries and pain. EDS is a unique condition because it is a chronic state of laxity that results in frequent acute injuries such as subluxations, dislocations, sprains and other soft-tissue injuries. It also causes chronic pain associated with joint misalignment and dysfunction. This means that each day you awake with both familiar and new pains.  For this reason, finding tools, or Zebra Hacks, that decrease pain is essential to increasing the quality of life for patients with EDS.

For me, the Oska Pulse from Oska Wellness has come to be been one such tool. The Oska Pulse is a device that delivers Pulsed Electromagnetic Field Therapy (PEMF), which has been shown to have enormous benefit in reducing pain and inflammation. Before I experienced it, it was hard at first for me to believe that such a small device (about the size of my hand) without any leads or wires would be effective in delivering a treatment that could alter my pain levels, but now I have personally seen the benefits of electromagnetic field therapy first hand, and believe it! PEMF works by creating an electromagnetic field around the site of the pain that encourages tissue healing. The Oska Pulse is different from a TENS unit, for example (another Zebra Hack), because it actually heals your body as opposed to just interrupting pain signals.

The Oska Pulse is a device that was developed by people who care about others (both human and cute cuddly animals) who are in pain. The company, Oska Wellness, which is Australian, is named after an adorable Koala (Oscar) who was helped by PEMF therapy after suffering terrible burns.I have to admit, this made me like these people, and this company before I even got the thing in the mail! They were so touched by the story of a Koala who got better when a PEMF device was found that they named their company after him!

Upon receiving the Oska Pulse, I tried it in several different areas and on several different types of pain. The device is easy to use. It comes with a compression sleeve, and all you need to do to start a 30 minute therapy session is press the only button it has! It’s easiest to notice the effects of the Oska Pulse on the pain of an acute injury. For example, I fell down the stairs shortly after acquiring  the Oska Pulse, and used the device to alleviate some of the lower back pain associated with the fall. I also managed to re-sprain an ankle while walking the dog, and found the Oska Pulse to be helpful in deterring swelling and decreasing pain while my ankle healed (even at a slightly faster pace than this EDSer is accustomed to!).

I have also found success in treating my chronic SI Joint pain/Hip pain with the Oska Pulse. I have Hip Dysplasia which has lead to SI Joint Dysfunction, early osteoarthritis andbursitis in my hip. I have had cortisone injections to manage the pain in both my hip and SI joint. However; Since I started using the Oska Pulse in this area, I have needed them less frequently. Recently, because of travel (and curiosity) I stopped using the Oska Pulse in this area to see if it was making as big of a difference as I thought it was. I can report that the pain has unfortunately returned, and I will be returning to the faithful use of my Oska Pulse in this area several times per day. After this experience, I am most definitely a believer that Oska Pulse is making a difference in my level of pain and decreasing my level of disability.

If you read the blog regularly, you likely know that I have Occipital Neuralgia, Cervical Spondylosis, and Intractable Migraine. I experimented with using the Oska Pulse to treat these issues after first receiving it, but found that the device sometimes increases my visual auras. I thought that I had overcome that by continued use (allowing my migraine brain to get used to the presence of the electromagnetic field) – but the problem persisted when I tried to treat pain near my head with the device so I decided that it was best for ME not to use it for these conditions. This doesn’t mean that it may not work for you if you have one or more of these conditions and are hoping to try it out.

If you want to try out the Oska Pulse as a Zebra Hack or for another form of chronic or acute pain you can order with the code zebrawrites and save $55! You can also find the Oska Pulse on Facebook!

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While May has ended, the need for EDS Awareness hasn’t. I’m teaming up with these awesome bloggers who also live with Ehlers-Danlos Syndrome (EDS) in order to sponsor a giveaway to promote continued awareness throughout the year!

My co-hosts are Hannah from Sunshine and Spoons, Sarah from My Stripy Life, Brittany from A Southern Celiac, Jenni from 1visibl3Girl, and Mary from The Headache Heroine.

The Goodies – Here’s what you could win!

Giveaway Rules:
  • Shipping for the bundle is free to residents of the US and Canada.  All others will be asked to cover the cost of shipping.
  • All entries will be verified.
  • Your email address will only be used to notify you if you win.

Click Here to Enter! (Until I can update my post to include the widget)

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10. What do you want people to know the most about your life with EDS?

There are so many things that I want people to know – that my level of ability and disability fluctuate from day to day and sometimes hour to hour, that EDS almost never travels alone – and almost always comes with co-morbid conditions, but most of all I want people to know that my life with EDS is first and foremost just that, a life. I may have different challenges than the average person, but that doesn’t mean that I don’t want the same things as everyone else.

11. When did you first start thinking that the dislocations/subluxation, extreme flexibility ect. could be related to a real problem?

I always knew that I was flexible – it came in handy as a gymnast while I was growing up. I didn’t connect my flexibility to a problem until my physical therapist at the Michigan Headache and Neurological Institute ran my first beighton scale on me (7/10) and told me that I had hypermobility that may be related to my neck and head pain. She started me on the path towards diagnosis.

12. Did your related diagnoses come before or after your EDS diagnosis? 

Some of both – the more common diagnoses like Fibromyalgia, Migraine, Chronic Fatigue Syndrome, and IBS/GERD came before the EDS diagnosis. The EDS diagnosis helped to explain WHY I was experiencing all of those things. The less common (in the general public) Dysautonomia and Mast Cell Activation Syndrome (MCAS) came afterwards, as the geneticist recommend that I be tested for them.

13. What’s your biggest pet peeve about trying to explain EDS?

EDS is a complex condition – and while most people (if they have any knowledge of EDS) think it’s a joint disorder – it’s not just our joints that are affected. Collagen is all over the body, that’s why it’s called connective tissue. Therefore, it can impact any and all of our body systems. That also means that it presents uniquely in each individual. There is no “stereotypical” presentation of EDS. Doctors especially should not be surprised if it begins to impact systems outside of the joints.

14. Has being sick impacted your relationships?

Yes. Being sick means that I have less time for maintaining friendships than I would like. It also means that my husband J had to learn to be empathetic about something he’s never really experienced. J is one of those people who’s NEVER sick – which is lucky – it’s just one more way that we balance each other out. While it wasn’t always easy, he has tried really hard to understand my experience and at the very least to ask me about it so that he can get a read for what I may or may not be able to do on any given day.  I am so fortunate that he has worked so hard to understand my pain and illnesses. I am also fortunate that when I need him to, he is willing to step into the caregiver role. He has sat by my bedside, rearranged his schedule more times that I can count so that he can be at an appointment or procedure, and even learned to run my IV protocol for migraine when I was getting it at home. He has shown me over and over that his love is unconditional, and I know I am so lucky to have him, and that not every partner is willing or able to do these things.

15. What were your initial thoughts about being diagnosed?

I wrote quite a bit about my feelings after diagnosis. You can check out some of my thoughts at the time here: Why I’m At Peace with my Diagnosis. In short though, I felt relief because I already knew that something systemic and serious was wrong with my body, I just didn’t know what it was. Having a diagnosis meant that I had a direction, a way to plan for treatment, and also a community. I have met so many great people online and person through support groups for EDS and this space. The one thing I will say that I wasn’t quite expecting is that an EDS diagnosis is a journey and not a destination. Since my diagnosis in March of 2016 I have been to more specialists than I can count and acquired several more diagnoses. With each one though, I am grateful that I am able to learn a little bit more about how my body works and how to support it so that I can be as healthy as possible.

16. What healthy habits have you adopted since getting diagnosed?

Before diagnosis I had already adopted a gluten-free diet because my GI had determined that I have an intolerance. Since diagnosis I have been working with a practitioner of integrative medicine, and have added a high potency probiotic, digestive enzymes, and a handful of other supplements specific to my body’s needs (in short I’m really bad at absorbing nutrients and really bad at digesting a variety of substances). I have also dropped dairy, and a number of other (mostly high histamine) foods that I have reacted to along the way. I haven’t ever used artificial sweeteners, but I also have stopped eating processed sugars since diagnosis.

I have also gone to a variety of physical therapies (joint protection, neck specific, balance, and aquatic). These therapies have taught me safe ways to engage in exercise again. The most successful mode of exercise has been aquatic therapy/exercise because it does not aggravate my Dysautonomia the way that exercising on land does.

17. How do you feel about your current treatment plan?

I am in the middle of struggling with insurance to get some things covered that I need, but in general I feel pretty good about my plan. The most difficult part is that I am my own case manager. I am the one who has to relay information between specialists, and spend hours on the phone with my insurance company. The best part is that I think I have found a pretty good group of doctors who are EDS literate and understand it as a multi-systemic condition. My local EDS support group has been essential in helping me find these people, and making suggestions about how to make adjustments to my plan that will improve things for me. It is always a work in progress!

I think that an important part of my plan that has supported me having the best quality of life possible has been embracing both western medicine and more holistic practices. In addition to a team of traditional specialists, I also have a chiropractor who is well versed in EDS and an acupuncturist. My integrative medicine doctor is the only person I have who looks at my whole body, and that is invaluable. Embracing every type of help available has made my plan work better. I know that not everyone can afford this (we barely can), but I think that especially for people with EDS or other incurable conditions there is a lot of value in looking into less conventional practices.

18. What do you think is the most misunderstood aspect of EDS?

It is a myth that EDS does not cause pain. It is possible for someone with EDS or a Hypermobile Spectrum DIsorder (HSD) to not experience pain (especially in youth) – but more often than not EDS causes some sort of pain.

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Day 9 – How do you stay motivated in daily life? 

For me, it’s extremely important for my mental health to know that I help others. Having others that rely on me, even pets, makes a world of difference for me. I realize that for others this isn’t always true, and could even be overwhelming, but it’s just something about the way I tick. I find that I am able (most of the time) to rise to meet the needs of others. Obviously this has limits – if it didn’t I would still be a school psychologist, but being able to work part-time in a flexible position and care for other people and animals in my life has been essential to increasing my motivation to continue to put in all of the hard work that is required for me to remain as well as possible. This means doing my physical therapy exercises, and scheduling and keeping multiple appointments a week with both traditional physicians and with alternative practitioners such as my dietitian, chiropractor, and acupuncturist.

It’s also important to have goals – if you missed it, I laid out some of mine here yesterday! Having big picture goals helps to keep your focus on doing what is required to stay as well as possible including taking time for self-care, when you might not otherwise.

Lastly, checking in regularly with family and friends also helps motivate me. I would guess this is for a lot of reasons. It’s helpful to talk with the people who know me to my core. It gives me a sense of calm, and also reminds me what I have at stake. It’s easy to get stuck in the fog of day to day pain and forget how important it is to make time for the people you love. Spending time with my family and friends makes me want to take care of myself so that I can spend more time with them in the future. It’s really as simple as that.

Did I miss something? What are some of your tips and tricks for staying motivated while living with chronic illness or other challenges?

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Day 8 – What are your top 5 goals that you want to accomplish despite your chronic illness(es)?

This is a hard one. I had to give up my career as a result of my EDS, but I’ve learned in the year since then that there’s more to life than your job title. There are still a whole lot of things that I want to do – but it feels scary to say them out loud and know that I may not be able to do these things down the line. Here goes nothing:

  1. I want to be a mom. It doesn’t matter to me much whether this happens via adoption, or if J and I have biological children, but it’s important that I not miss out on this part of life. I’m a natural caretaker, and I’ve wanted children since before I can remember. I know that I won’t be the perfect parent, but here’s a secret: no parent ever is.
  2. I want to leave a net positive effect. I know that I require a lot of care and attention, but I also want to know that I have contributed positively to my community. It doesn’t have to be everyday, or all of the time – but when I’m able it means a lot to me to be able to do this.
  3. I want to write something – other than this blog. Maybe even a book.
  4. I want to continue to read everything of interest that I can get my hands on. Particularly fiction. I also want to continue to build my upstairs library – outside of my bedroom, until it’s a place where I can take refuge from the world on the hard days. I know that it makes me a bit weird, but I love physical books. There’s just something about them that’s magic to me.
  5. I want to travel as much as I possibly can, despite the fact that chronic illness makes it difficult for a myriad of reasons.

These may be modest goals, but I think that they would make me very happy. I also think they’re attainable, which any educator will tell you is important when you are setting goals.

Saw Beauty & The Beast Last Night – This is Still Applicable

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Day 7 – What are your top 5 coping tips? 

  1. Be kind to yourself on the bad days. Allow yourself to rest. Recognize that resting is not only not a waste of time, it’s productive because on the worst days, it’s what your body needs in order to recover enough for more productive days ahead.
  2. Do what will distract you from the pain. When I can, I read and write. When I’m not well enough to read, audible (essentially books on tape), Hulu, Netflix, and Amazon Prime are my friends. I also like to color and knit when my hands will allow it!
  3. Remember your needs when agreeing to do something. If you need to meet in a quieter space, or need to find a time to meet a friend one on one instead of agreeing to attend a party, ask. It took me far too long to realize that people couldn’t possibly accommodate for my needs if I didn’t first recognize what they were, and communicate them.
  4. Learn to sit with the pain. This means accepting that pain is always going to be a part of your life. It means letting go of the 24/7 fight against the pain. That fight is exhausting, and once you accept the pain, you free yourself from the fight. It also means that if you eventually reach a state where you’re not experiencing pain you can take the time to enjoy it instead of worrying what will cause it to start again.
  5. Get involved. As a special educator, I learned to advocate for myself by first having to advocate for others. If you’re anything like me, having others to fight for will make it a lot easier to make advocating for yourself a priority. Try blogging, or if that’s not your style, get involved with a local support group. Finding a way to make a difference for yourself and others with EDS will make you feel less helpless, and more in control of your fate.
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