CLC MEMBER FEATURE: My name is Jess, I have lived in Melbourne, Australia my whole life up until 4 weeks ago. My husband, daughter and I have moved to the Cayman Islands in the Caribbean. I struggled with endometriosis for many years, well before I knew it was a disease. I always had bad period pain but I thought it was normal... during one cycle I started to bleed outside the time of my actual period. This happened for a few months before I began seeking medical help. I was diagnosed with endo after a laparoscopy.
The lap only helped for a few months, symptoms came back so my partner and I decided to try for a baby. After 9 months of trying to conceive my gynaecologist advised we will need to do IVF. We were booked in for our initial appointment with the doctor to talk about the journey we were about to embark on, before the appointment on that same day I decided to take a pregnancy test since I'd had an extremely vivid dream that I was pregnant. I did the test and it was positive! Total miracle!
Once my period came back after I stop breastfeeding my symptoms came back with a vengeance, having a very active toddler and crippling pains to the point of being bed ridden is very difficult to manage. I had another lap in October last year which helped me fall pregnant again, unfortunately I had a miscarriage at the end of January which shook me to my core and another miscarriage in May.. no one can prepare you for the pain and sadness..
For the last 6 months I've been seeking alternative remedies to help with the pain. I've had weekly fertility acupuncture which has changed my cycle and reduced the pain and heaviness of the bleeding. I'm also taking Chinese herbs which have reduced the severity of ovulation pain and the unbelievable pain of my periods. I'm so happy with how far my body has come after all the trauma it's been through this year.
I am so grateful for everything I've endured, it's shaped me into the strong, resilient mum that I am today. Having my little online community @endohelp_australia has helped me connect with women all around the world who suffer the same way I do. Keep fighting the daily battle, you're definitely not alone.
Do You Have The Right Heart to Give?
The Pulmonary Hypertension Association (PHA) fuels personal passions and empowers people, living with PH, to confidently face challenges that confront them. PHA is the only national charity providing support and educational resources for people living with PH, for families, caregivers, health care professionals who specialize in caring for people with the often misdiagnosed disease, and for PH researchers searching for a cure. Please make your gift today 🤗www.phassociation.org. Follow them @phassociation#TheRightHeart
We are home and happy! But the nursing doesn’t stop when we leave the hospital!
-inhailer - 15 mins CPT vest with saline chloride nebulizer -cough assist with suction
-fill food bag -morning meds
Ok - this may be a less than popular opinion...but caffeine is the topic! I love a good cup of coffee as much as anyone. I have been a regular coffee drinker for almost 16 years, drinking up to 6 cups a day easily. My love of coffee is an understatement!
But...I quit it AGAIN. This is the FIRST TIME ever being caffeine free AND having perfect levels as an adult. I started to believe the effects of coffee help mask high phe levels. For years I felt pretty ok with levels of 7 or 8. (And my daily doses of caffeine). Once my levels got down below 5 I began to notice I was less interested in it. Caffeine increases dopamine production which declines with high levels.
The first few weeks of withdrawal were MISERABLE - then I suddenly felt my appetite improve, my cravings decrease and my energy balanced. Fast forward to a few too many (minor) cheat days recently and I could barely get anything done. I was sooo tired and unfocused, but I chose not to take caffeine. I believe I was using caffeine to self medicate the effects of too much phenylalanine. I'm not suggesting you quit coffee if you love it - it is a free food that can prevent eating other off limit foods. But know how it may affect you. Your brain health and good levels are way more important than the false energy boost from caffeine!
The next amazing thing to hit the raffle page. A basket of totally amazing homemade EB products by Kendra Millner. For EB kids, as well as any kids!!
-Bath Salts 20oz Bottle, Lavender Scent
-Foaming Baby Soap- 8oz Citrus Scent
-EB Salve “unscented” 4oz. (Smells like coconut due to the oil, no essential oils)
-EB Salve- Baby Safe 4oz Lavender -EB Salve- Hi Scented 4oz Lavender
-Lotion Bars 2x, 2oz Each Floral Scent
-Lip Balm- .5oz Peppermint -Lip Balm - .5oz Red Tint Peppermint -Cuticle Cream - .5oz Lemon Scent
All these “potions ” are homemade from someone in the EB community, so they are sure to be great
There will be 10 spots for $10 each in a drawing for your chance to have this basket delivered to you!
PayPal at TheBigRide2017@gmail.com 🦋💙🚴💛🦋
Everybody’s road will take a different path and go at different speeds, and that’s okay. Your time might not be at the same time as someone else’s, but it’ll come. Maybe not when you want it to, but when it’s right. 📷: @vikacita_life#ChronicLoveClub
👩🏻🤪SMILE, SHARE & INSPIRE! I’M SORRY I CAN’T ACT MY AGE!! 👵🏽Hellloooooo!! Do you ever play around keep your body, mind and soul young and vital no matter what age you are or are you too serious and hard as a rock? Ahahaha well sorry but im not like that and you better WATCH THIS CHEER UP ENJOY & SMILE! Hugs Kiss Kiss!! 💋💋•••••••••••••••••••••••••••••••••••••••. #model#instavideo#smile#inspire#fitnesss#influencer#gym#fitgirl#instafashion
🎄🎶 On the FIFTH day of Christmas we have been gifted with INFLUENCE ... to ASK for what we need and want ... to CHALLENGE people to think differently ... to TEACH people to think differently ... to MODEL for people a new way of believing and doing things ... and to GIVE to others something that makes a difference for them. 🎶🎄 🎁🎁🎁🎁🎁🎁🎁
Repost By sfcfoundtn: Our hearts go out to Stephen and Sally Damiani and family who tragically said goodbye to their beautiful son Massimo yesterday. Stephen is a true rare disease hero, having helped uncover his son Massimo’s rare disease, a form of Leukodystrophy. You may have seen Massimo’s story in 2013 on the ABC’s ‘Australian Story’ program aptly entitled ‘Cracking the Code’. This incredible family are pioneers in the gene technology space and have always been an inspiration! Our thoughts are with them at this sad time.
#missionmassimo#missionmassimofoundation#raredisease#hero#medicalresrarch#crackingthecode#leukodystrophy (via #appskottage.com #Grab@AppKottage)
Why does Penny Bundy, MSU Board Treasurer and Inclusion Body Myositis patient, give to MSU? “MSU became my lifeline 3 years ago when I was first diagnosed with IBM. When my neurologist gave me the news that I had this very rare disease, he had little information and no help that he could offer. I spent endless hours over the next few weeks researching this disease, and the options I might have. I found little until I somehow stumbled onto the MSU website, and from there the Facebook support group. Being able to join the IBM support group was like turning on a floodlight in a dark room. In the first few weeks of interacting with other IBM patients in the support group, I learned more about my disease than I had in all of the research I’d done. I became part of a community that cares about and supports each member, a place where I can express myself freely, knowing I’m among others who understand my situation. The resources, education, and support that MSU provides each of us is invaluable. This is why I became involved as a volunteer, and why I will be standing first in line when there is an appeal for funds to keep MSU operating. It is the very least I can do for an organization that has provided so much for the Myositis community.” We hope you will give, too! UnderstandingMyositis.org/giving #myositis#dermatomyositis#inclusionbodymyositis#necrotizingautoimmunemyopathy#giving4myositis#myositis#raredisease#inflammatorymyopathy Will you consider giving to MSU? UnderstandingMyositis.org
This girl knows how to push every single one of my buttons. Then there are moments like these when she is quietly sitting next to me working really hard. She is a very special little girl. I am noticing changes in her vision and it hurts my heart ❤️. What I wouldn't do to keep her from losing her vision. #bbs#lowvision#raredisease#adoption#bigfamily