Cathy at Ty Siriol Ceramics and Crafts recently posted a short review for this book on pinterest which I thought I would share with you.
The “blurb” from Amazon reads “This is an incredibly informative and reader-friendly book about a common debilitating medical condition that goes largely undiagnosed and untreated. ADRENAL FATIGUE: The 21st Century Stress Syndrome is a very empowering work cram-packed with vital information about a condition that very likely affects millions of people”
Cathy writes “I’ve recently read this book to try to get to the bottom of why I’m so exhausted, among other things. It’s a really good read and helps you to assess if this could be a problem for you as well as giving really thorough advice….” Remainder of her short review is here:
I am really pleased to have been featured on The Zebra Mom regular Friday Feelings feature. Please check it out – and the rest of her great blog! Claire x
As it is Ehlers Danlos Syndrome Awareness Month, during the course of May, we will be reading the diary entries of EDS sufferers. Each person experiences their illness differently and I think it will be interesting to see these differences throughout the month.
This week I spoke to Claire from Pain Pals Blog. The mum of two previously worked in health care but medically retired nine years ago. She now works in the education system and enjoys Spoonie friendly hobbies.
Claire was diagnosed with hypermobile EDS at 42. She also suffers from migraines; dysautonomia/POTS, chronic nerve pain, gut problems, Raynauds, neurogenic
Time for some Monday Magic! I hope that you have all had a great weekend – I think it was Mothers’ Day in the USA, so hope all you mums were spoilt rotten. I was asked by Evie, the lovely Zebra Mom, to take a selfie wearing red and to post it to spread the word about Vascular Ehlers Danlos Disease. We had a very rare moment in our house and I managed to persuade everyone to do a selfie…all 5 of us in one shot!!
I am delighted to be still be finding different blogs from the Chronic Illness Bloggers community to introduce here – please remember that just because we are chronically ill doesn’t mean that we don’t blog about other things too! So sit back with a cuppa and enjoy exploring some great blog reads with me….
Secret feelings flash in your head, mulling over all that was said. Blaming yourself, filled with dread, head still running lying in bed. Insecure low demure, long road to get a cure. Want to run, but legs on stun, no let up when darkness comes. Anxious to please, the day I want to seize. Heart beats fast sweating palms, why won’t my feelings calm.
Antidepressants, there’s still no effervescence, side effects not pleasant. Counselling room once a week, finding it hard to speak, stony silence, eyes gaze internal struggle it’s such a muddle, would prefer a cuddle. Reading books about black dogs and fog, ready someone’s blog.
Mental health label of stealth, stigma seen as an enigma, dangerous person, things with you will only worsen. Media hype a load of tripe, branding all for actions of a group so small. See me as I am not as the only man…
Another great post for Ehlers Danlos Awareness month, this time from Hannah at Sunshine and Spoons blog. As a child growing up with aches and pains, dislocations, sprains, dizzy spells, clumsiness, migraines, circulation problems….it really was just how life was as no one even thought to join the dots, let alone consider a syndrome that might be responsible. I never even heard the name “Ehlers Danlos” until my late 30s – although Marfans was mentioned to me aged 20.
I do know about EDS now and have made it my business to as so many with rare illnesses need to. The result has been that I recognise my kids are growing up symptomatic – although getting a diagnosis is proving difficult as referrals are pushed from the desk of one consultant to another – and understanding that not everyone has pain daily, struggles to keep up with hand writing in class, is constantly twisting an ankle or popping a joint. One son is living with severe migraines for which we seem to be in a constant loop of changing medication to bring some control as he is about to sit his A level exams. His long neck gives him daily pain and undoubtedly contributes to his migraines. My daughter, aged 14, has dislocations, daily joint pain, dizzy spells, writing problems…..the eldest, the student engineer aged 21, is hypermobile, has a sternal “deformity”, clumsiness, dizzy spells – sound familiar?? All three, whilst very bright, suffer massive anxiety to such an extent that over recent years we have visited CAMHS, Heads Together, use of anti depressants and mindfulness techniques. I feel a whole post coming on…..being the age they are, mum has not been able to pin them down for a quote as I write this!!
My younger 2 zebras and me!
So without further ado let me introduce some great children who have spoken to Hannah:
“This post may be a little hard for you to read. I know I had tears in my eyes more than once while typing this up.
If you’ve been hanging around Sunshine and Spoons for very long, you know that at least 3 of my 4 kids have Ehlers Danlos Syndrome, which they inherited from me. Davy (3) and Nano (7) don’t really understand it yet, but Katie (9) does. She goes back and forth between being proud of being a zebra to asking why God would make her have EDS and all of the pain that goes along with it.
Kids are supposed to be able to run and play. They shouldn’t have to deal with chronic pain and fatigue. They shouldn’t have to spend their childhoods at doctors’ offices, wearing braces and explaining random bruises.
But, that’s not how things always work. I interviewed 25 kids who have EDS to see what it’s really like to be a child or young person with the disorder. “
For the remainder of the post and the children’s quotes please click on the following link
“The Girl in Black” by Kathy Lauren Miller is a hauntingly taut murder mystery as well as an awesome page-turner! The mystery begins with high school senior, Kate Mckenna who happens to live in an old Victorian manor that is also the Mckenna Memorial Funeral Home. Her father, Dr. Brendan Mckenna, happens to be the county’s Chief Medical Examiner. Shy Kate, whose social life as always been nearly non-existent until she is thrust into the limelight when the promiscuous prom queen, Ashley is found tortured and murdered.
Accusations run rampant in Kate’s High School concerning several male students that were involved with Ashley. To make matters worse, Ashley’s remains now reside at the funeral home where Kate lives. Kate and her best friend Cooper, a computer nerd, and Kate’s unattainable heartthrob, handsome Shane, all become involved in Ashley’s murder. Suddenly, Kate finds herself in the cross hairs of the sadistic…
Good morning and welcome to another Monday Magic with some more great inspiring blog posts for you. I have just returned from a GP appointment and my head is spinning with the various specialist appointments I have on the agenda….endocrinology this week, cardiology, rheumatology, hip x ray and then orthopaedics…..
This is without the referrals for the kids! University College, London where I was diagnosed no longer accept direct referrals so the kids need to be referred by another consultant. Initially this was to be a paediatrician, but the A level student has turned 18 and the paediatric department decided that they really don’t know enough about EDS to take my lovely girl on, so she has been referred to a paediatric geneticist. We are going to try to get an appointment for my son with the same rheumatologist that I see…….I think that we just have to go with the saying “don’t hold your breath”!
So I am going to sit down with a coffee and enjoy some tips, some yoga and some stories from some of my fellow chronic illness bloggers – if you look and listen really hard, you might spot yours truly in the You tube film from Invisible Girl!!
I am really pleased to have contributed, in a small and rather quiet way, to this video that Jenni has put together for EDS Awareness month. Jenni is a vlogger/blogger and goes by the name 1nvisibl3Girl – please have a look at her channel & blog and the social media sites of the other great (very young!!) EDSers on this short film!!
“This video is all about living with Ehlers Danlos syndrome (EDS) as the zebras I have been lucky enough to get to know, and I, share our own experience of this chronic, invisible illness. We talk about what EDS is to us, how we manage our symptoms, how EDS has changed our lives, why we started our own EDS based blog or vlog and our hopes and dreams for the future. We hope this is shared as much as possible this May as it is #EDSawarenessmonth so people can learn what it is really like to live with EDS but also to support those also living with the disease. I know it is long but please watch it all if you can. There are some amazing people describing some very difficult things in their own words. This is a project I am very proud of.” Jenni Pettican
Time for some Monday Magic! I hope that you have all had a great weekend – I think it was Mothers’ Day in the USA, so hope all you mums were spoilt rotten. I was asked by Evie, the lovely 
PainPalsBlog 