Happy Spina Bifida and Hydrocephalus Awareness Week 2021

This week is Hydrocephalus and Spina Bifida Awareness Week. The last time I blogged about it was in 2018.

If you don’t know my hydrocephalus story yet, find it here: https://justkatherineblog.wordpress.com/2015/10/22/my-story-growing-up-with-hydrocephalus/

This week, I will be wearing yellow as it’s the awareness colour for hydrocephalus. I have yellow eyeshadow. Please help to do whatever you can to raise awareness for hydrocephalus.

I’m particularly grateful to Shine Charity (formerly ASBAH) who helped me through some hard times and were always there to listen and advise.

The things I have done to help raise more awareness for hydrocephalus have been to blog about it now and then on my blog. I have shared my story and advised families on Facebook and I’m always ready to share what it’s like to be me with not just hydrocephalus but also Cerebral Palsy and 4 visual impairments.

I give thanks for each and every day I don’t have hydrocephalus symptoms and that my shunt is working.

Pregnancy and Infant Loss Awareness Day 2021: My Story

Today is Pregnancy and Infant Loss awareness day and it’s the first time I’ve blogged about it. I’m surprised about this because I have talked about many aspects of my life here. I’m not a mother myself yet and have been told by medical professionals that could be possible with specialist care and lots and lots of physical support but do have my own story about infant loss.

On 22 December 1981 at Kingston Hospital in the South London borough of Kingston upon Thames, England. I entered the world with my identical twin sister Natalie.

From that moment, our fight to stay in the world began. We were moved to another hospital hours after being born.

We had numerous complications from premature birth and our lives were in constant danger of being lost. We fought for survival together for nine days until Natalie passed away.

I continued my fight alone, and came home.

Life with my disabilities is full of challenges and all through my life I asked myself what made me survive. I believe Natalie had some part in the fact I am here today and she passed her strength to me. She lives through me.

Everything I have done in life, every special occasion, I’d wish she was there with me. I felt like she was. When I have doubted things, been scared or happy I knew she was protecting me.

I would have loved for her to survive and for us to have experienced many of the “this could only happen to an identical twin” moments that other twins I’ve known have experienced.

What would we have gone through? I’ll never know and can only speculate but I do know those 9 days with Natalie were a gift to me although I have no memory of them.

The time between our birthday and her death will always be difficult for me but for me on a personal level and also because of the time of year it is.

My family never stopped celebrating our birthday because of grief and painful memories when I was young and while I lived with them and now I’m married, I still celebrate it, Christmas and New Year. It’s a time of hope and new beginnings, too.

It’s a gift to know Natalie was in the world.

What happened to Natalie has taught me that from tragedy, other things can happen and if we hadn’t have been born together I wouldn’t be here.

Even though I never knew Natalie, I have loved her my whole life and will never stop loving her. She gained her angel wings in 1981 but to me she is always here.

Although Infant Loss Awareness Day is a sad one, it’s also a time to feel happy about those who were in the world for even a short time, as every life is a blessing.

If you have experience of infant loss, my thoughts are with you today and always.

Review: Cien CC (Colour Correcting) Cream Makeup Base

As someone who has bought supermarket cosmetics before, I was curious to try this.

Thinking I had finished my makeup base some months ago and that I would have to buy some more, I was happy to find a full tube of CC Cream. The product is in a pink tube with black lettering.

As always, I can’t see the ingredients on the back with my eyesight so anyone who is interested in that aspect of the product will have to look them up online.

I’ll focus my review on what the product claims to do and if it worked for me. The CC base claims to:

Correct skin tone,

Make skin feel renewed

Correct imperfections

Reduce wrinkles

It has SPF 15 and is only available in one color, medium. You get 50ml of product for 4.99€

The texture is pretty thin and the product is buildable. It feels like a tinted moisturiser. I was worried the tone would be too dark for me but it worked well.

The real downsides I felt were that the texture was almost too thin. Worse, during the hot days of summer, the product melted to a water-like consistency and was dripping everywhere. I had to put it in the fridge to get it back to its original consistency.

It was comfortable to wear and blended well.

Verdict: 3/5 because of the texture and it was expensive for what it was. Overall, I wouldn’t buy it again as have found better products but I was interested to try my first CC Cream as have had success with BB creams.

Harlequin Believer Series Fall Blog Tour: A Cowgirl’s Secret by Melinda Curtis

About the Book:


Could saving the ranch…Mean a future together?Cowgirl Cassie Diaz has a secret—a bull riding accident may have stolen her dream of motherhood. She needs to recover, but how can she rest with her family’s ranch in peril? Recent Second Chance, Idaho, arrival Bentley Monroe offers help, and his quiet strength makes her feel safe. Loving him could heal her wounds, but would she have a future with this family man?

Add A Cowgirl’s Secret to your Goodreads!

(Release Date: September 28)

Where to Buy:


Harlequin.com: https://www.harlequin.com/shop/books/9781335426420_a-cowgirls-secret.html

About the Author:


Melinda grew up on an isolated sheep ranch, where mountain lions had been seen and yet she roamed unaccompanied. Being a rather optimistic, clueless of danger, sort she took to playing “what if” games that led her to become an author.  She spends days trying to figure out new ways to say “He made her heart pound.”  That might sound boring, but the challenge keeps her mentally ahead of her 3 kids and college sweetheart husband.

Contact Melinda:


Website: https://www.melindacurtis.net/
Facebook: https://www.facebook.com/MelindaCurtisAuthor/
Twitter: https://twitter.com/MelCurtisAuthor
Instagram: http://instagram.com/melcurtisauthor

Excerpt:

“I told you so, Cassie.” Cassie’s brother, Rhett, shook his head.
Cassie dropped her saddle back on the stand, having only lifted it a few inches. She leaned on the horn and cantle, trying to ease the pain that stretched from the top of her hip to her inner thigh. “Don’t start.”
Don’t tell her she shouldn’t have tried bull riding.
Don’t tell her she should have stuck to horse training.
Don’t tell her horse training wasn’t going to pay the bills.
There came a point in every young woman’s life where she had to accept that some dreams were never coming true—hers being making a decent living training horses. At this point, unless she won the lottery, she needed to set aside girlish dreams and get “a real job,” whatever that was.
Cassie wasn’t ready. And honestly, she might never be. Rhett chuckled. “You winning that purse was a long shot, kind of like Grandpa winning the lottery with that ticket he buys every week.”
Exactly.
“And here we go,” Cassie muttered, glancing at Baby, the quarter horse she’d been trying to saddle when a spasm from her bull-beaten hip sidelined her. “Rhett is on a roll.”
“Indeed, I am.” Rhett tipped up his black cowboy hat and grinned. “I’m surprised you can walk after that bull stomped on your hip.”
The emergency room doctor had been surprised, too. Not that she’d beaten all odds. The orthopedic specialist had given some grim news. News Cassie hadn’t shared with her family, because…
“You never should have gotten on that bull, sis.”
Because of that. Cassie gritted her teeth and stared at the barn rafters at the Bar D. She hadn’t told her family she was considering giving up the ranching life, partly because it was terrifying, and partly because no one in her family had ever given up ranching life—not in five generations.
She continued to stare at the rafters, settling her cowboy hat more firmly on her head. There were cobwebs up there that needed tending to, if one was bothered by such things, which she was, unlike Rhett, who tended to go through life as happy with a tidy environment as a messy one. He preferred to spend his time on extreme experiences, like zip-lining and bungee-jumping off bridges.
Cassie’s gaze drifted back down to the photo gallery on the wall behind her brother.
During a streak of good luck and flush bank accounts, her father had insulated the Bar D’s barn, which came in handy five or six months out of the year when Second Chance, Idaho, was snowed in. But because the insulation had to be held in with something, he’d installed cheap wood paneling. And because the paneling was so very bare in the breezeway, he’d hung pictures of Rhett and Cassie competing in rodeos when they were kids—Rhett in calf and trick roping, Cassie in barrel racing and trick riding.
Back when I thought that’s what I’d do with the rest of my life: cowgirling.
Like horse training or trick riding offered a health plan and retirement benefits. How naive she’d been.
Those pictures had been taken before Cassie’s parents decided to take a job managing someone else’s ranch in Wyoming and handed back the reins of the Bar D to Grandpa Diaz. Before Cassie began keeping the Bar D’s books and worrying about making ends meet.

Tribute to Aunty Jane

Dear Jane,

A year has passed since you gained your angel wings. I miss you every single day.

The things I will never forget about you are your smile, your joy for life and your talents, cooking and how you kept beautiful homes and loved your garden.

I have you to thank for getting me hooked on Ben and Jerry’s Cookie Dough ice cream and Pepperidge Farm cookies during a family vacation to the US.

Every year when I was younger and up to when I finished university, we’d go on vacation to Dorset or Devon with the extended family. You loved the US and the UK equally and embraced life in both countries.

I would look forward to your visits and loved the surprises you bought for me (some kind of makeup that I couldn’t get in England). I remember how proud of me you were when I graduated from Reading University and I loved having you at my graduation.

I was glad you met my husband and wished we could have been together longer that day.

Thanks for your generosity, your sense of humor, your acceptance of me and for just being you.

Your loving Niece,

Katherine

Happy International Physiotherapy/ Physical Therapy Day

While listening to the radio today, I found out that today is International Physiotherapy (or Physical Therapy if you’re from the US) Day.

The Oxford Advanced Learner’s Dictionary defines physiotherapy as the treatment of disease, injury or weakness in the joints or muscles by exercises, massage and the use of light and heat.

As a person with Cerebral Palsy and Hydrocephalus, I grew up with doctors recommending this to help me with my strength, stamina range of movement and high muscle tone.

As a baby, I had physiotherapy sessions at home and then as I grew the sessions were at school or a Paediatric Assessment Center. I was taken to therapy in the therapy pool and my earliest sessions were that therapy and exercises focused on head control.

My other therapies were eye patching therapy to help strengthen my eye muscles and help me turn my eyes outwards as I had crossed eyes as a baby and was diagnosed with bilateral sixth nerve palsies which mean that the abducens nerve, the cranial nerve in charge of turning my eyes outwards, is paralysed. I have tunnel vision and no lateral vision because of this. I also have bilateral squint, (strabismus), nystagmus (uncontrolled involuntary eye movements) astigmatism and hemianopia (blindness in half of both eyes with a severely reduced visual field for remaining vision).

No therapies will help these eyesight difficulties since they are all caused by the damage to my occipital lobe (the vision area of my brain).

I had physiotherapy in the form of stretches for my movement. limitations.

In terms of my hydrocephalus, the therapy and advice took the form of recommendations for head and neck positioning when sleeping, since my symptoms of shunt blockage or malfunction were a very bad headache after having been asleep for a few hours and as a child I would typically wake with nausea, vomiting dizziness and disorientation at any time between midnight and 2AM which my doctors told my parents was a classic symptom of raised intracranial pressure. I would otherwise be sleepy and not very responsive.

I was diagnosed with hydrocephalus when I was two weeks old after grade 4 (severe bilateral brain bleeds).

I was born at 29 weeks, one of identical twins.

My Cerebral Palsy diagnosis came soon after and doctors and therapists focused my therapies on my whole body since I have spastic quadriplegia which affects my arms, legs and trunk as well as causes weak muscles on the left side of my face and some difficulty with swallowing pills and with eating different textures of food as well as the need for an adapted spoon, plate and cup.

My balance, strength stamina and coordination are also affected. I have subluxated (half dislocated) hips and I have scoliosis (a curved spine), kyphosis (a hunched posture) and lordosis (a larger inwards curve on my lumbar spine than is normal). My hips have a rotational deformity and this affects the position of my knees and feet. I have high foot arches which are a foot deformity associated with Cerebral Palsy and my feet turn inwards. My ankles are very tight and I can’t move my toes.

When I was diagnosed with my disabilities, most people who saw me talked about spastic quadriplegia as my diagnosis and some talked about mixed CP because of the balance and coordination issues (which are usually part of ataxic CP). Dystonia was also mentioned as I have involuntary movements.

My experience of physiotherapy is that I was always nervous about the sessions as I knew the stretches would be painful for me because I can’t relax my muscles by myself. I also knew that telling people I didn’t want to do my therapy would not help me, so I went to my sessions.

When I was five years old, therapeutic riding therapy was prescribed by my doctor and I went to two specialist riding schools between the ages of 5 and 17 for which there were long lists. These were part of the Riding for the Disabled Association (RDA) which is a UK organisation that helps to bring together a network of specialist horse riding schools so that children and adults with disabilities can learn to ride and learn about horse care. There are people to physically help the riders too. I have fond memories of this therapy and horses are still my favourite animals.

As an adult, I have had massage therapy and we have an infra red lamp which we use for pain relief and relaxation. This really does relax me and makes me sleepy. Other heat therapy I have is using a hot water bottle in bed in winter or placed near my feet to help my circulation.

I have therapy bands although I am unable to stretch them myself as well as a soft ball to hold in my hand and try to squeeze (I haven’t quite mastered squeezing yet).

I have had a lot of different kinds of physiotherapy in my life and am fortunate that my husband is able to keep doing that with me. The stretches will be necessary for the rest of my life.

I was encouraged to find activities I enjoy and I would encourage anyone to do the same. I love being in the pool. I have fond memories of my horse riding days.

Any kind of exercise tires me out but that’s just the way my body reacts.

It’s not unusual for me to have pain, muscle spasms and involuntary movements during exercise or afterwards and I can even be sleepy.

I have slept for hours in the past after therapy sessions at my local hospital. In my experience, sleep is healing, too and a good compliment to exercise.

Harlequin Investigator Series Fall blog Tour: Texas Baby Conspiracy by Barbara Han

About the Book:


She’s fighting for her and her baby’s livesBut she can’t remember why…Injured and locked up in a decrepit trailer, Alyssa Hazel wakes to only fragments of memory. She knows she’s pregnant, her life is in danger—and there’s one man she can trust once she escapes. But police officer Blake O’Connor hasn’t forgiven Alyssa for walking away from their marriage. Can he protect her and their unborn child…even when this conspiracy hits too close to home?

Add Texas Baby Conspiracy to your Goodreads!

Release Date September 28

Where to Buy:


Harlequin.com: https://www.harlequin.com/shop/books/9781335555359_texas-baby-conspiracy.html

About the Author:


USA TODAY Bestselling Author Barb Han lives in Texas with her adventurous family and beloved dogs. Reviewers have called her books “heartfelt” and “exciting.” When not writing or reading, she can be found exploring Manhattan, on a mountain, or swimming in her backyard.

Contact Barbara:


Website: https://www.barbhan.com/

Excerpt:


Add Texas Baby Conspiracy to your Goodreads!

When Alyssa Hazel stirred and felt nothing but walls on all four sides of her, shock robbed her voice. Panic caused her pulse to pound and the extra blood thumped against her skull. Her head threatened to split open as she tried to recall where she was and why she was here.

She pushed her hands out, trying to see if the walls would give. The material was pliable but solid enough to hold form. She felt for cracks or anything she could grip. Movement hurt. She attempted to stretch out her legs and couldn’t get very far.

Where was she? What happened? Why was she enclosed in such a tight space? A haze pressed down on her brain and the pressure was the equivalent of a thunderstorm rolling in.

It was pitch black and she couldn’t remember a thing about where she’d been or what she’d been doing before ending up in this…whatever this was. Forcing recall only made her brain hurt more. A stomach cramp drew her legs tighter to her belly.

Wouldn’t there be a door if she was in some kind of compartment? There would have to be a crack around a door or hatch. She reached up and couldn’t find a ceiling. That seemed like the first good sign so far. It meant that she might be in a small closet or storage room.

She felt around, trying to get her bearings because right now she was at a loss as to where she was and what she was doing there. Bringing her hands to cradle her stomach, she knew one thing was certain, she was pregnant. Very pregnant. Her belly was huge.

Again, her mind drew a blank to a question that was so basic she felt like she should have an answer. What on earth was she doing there? She brought her hand up to her head and looked for a reason for the memory loss and headache. She touched a tender spot and felt dried blood.

At least she thought it was. Seeing was impossible despite her eyes adjusting to the dark.

Logic said if she’d gotten inside this structure, there had to be a way out. Bracing her hands against thin walls, she maneuvered up to a sitting position.

Next, she instinctively checked to make sure she had on clothes and then immediately checked for her wedding ring. The band was gone. Thank heavens she had on a cotton shirt and jeans. No shoes but she did have on socks. She remembered wearing her favorite boots. The random memory seemed to float around with no context to ground it. Where had she been going? What had she been doing?

A noise startled her. She froze, unable to make out what it was or exactly where it came from other than out there.

Remembering my Grandad (Pa) on His 100th Birthday

Terrence Barton Kelly, born on September 4th 1921 in Dublin, Ireland. You were my maternal grandfather. You moved from Ireland with my grandmother, Patricia Mary Kelly, when my mother was very young.

Father to 4 children, Patrick, Debby Anne and Jane, and grandfather to many grandchildren, you loved your family so much.

You were there for me in the good times and the bad, when I came into the world, one of identical twins, we didn’t know what to expect when I was diagnosed with Cerebral Palsy and Hydrocephalus including visual impairments.

You accepted me unconditionally always, and you and Gran visited me in hospital during the recovery periods from my shunt surgeries and were so happy every time I came home afterwards. You taught me not to be scared of medical procedures and to be brave.

You were so proud of the mixed cultural heritage of our family: those from England, the USA and Ireland, and adored other cultures, too. I would listen, hooked on your stories, as you and Gran told me about your latest trip to the US, or farther afield, to places I dreamed of going. I think you would have celebrated the fact that I have dual British and Irish nationality and I would have loved you to be able to have witnessed the moment I got it. I have always believed, like you, that celebrating cultures is important.

You were proud of all my achievements, and taught me to not feel bad about the things I couldn’t do but were proud of me for trying.

You embraced my passion for Spain and Spanish and congratulated me on learning a language that was new to the family. You celebrated my finishing every school day and year, knowing what a physical challenge that was.

You knew I would make it to university and encouraged me when, due to to my own love of other countries, I left England to study in Wales.

When my year there did not turn into more, you supported me during my Geography degree studies at the University of Reading. I remember fondly the talks we had about the architects you had met through work and who I was learning about as part of that.

You always encouraged me to enjoy what I loved in life, in my free time as well as when I was studying.

Little did I know that 2003 would be the last time I would see you. In previous years, your health had had some huge challenges. I talked to you, wanting to help you see that needing support or mobility aids was not bad or something to be ashamed of. You faced those years with strength and a positive attitude.

When you passed away, I was devastated. In my final year of university, I found it hard to concentrate and my support workers and teachers understood. I wasn’t sure I’d graduate, if I had the emotional strength, but I thought of you and kept fighting.

I spent time with our family and moved back home for the rest of my final year. I finished that year and graduated. Words cannot describe how much I missed you at my ceremony. I felt that you were there and that you were proud of me.

I would have loved you to have met my husband and to have been at our wedding. If you were alive today, things would have been difficult and strange because of the Pandemic and restrictions would have made it harder for me to see you as much as I would have liked.

If the Pandemic had not have happened, and you were still alive, I would have loved to celebrate today with you, with the biggest cake imaginable and all your favourite food and people.

This tribute is for you and I’ll never forget you.

Love always,

Katherine

Used Products and Life Update: August

My used products for this month are:

Byphasse Re-hydrating Facial Mist

Cien Multi Oil Care Lip Balm

I reviewed so many good books this month. Highlights include:

Surprise Reunion for His Cinderella:

Surprise Reunion for His Cinderella @HQNBooks @rararesources

Escape to the Hummingbird Hotel by Daisy James:

Escape to the Hummingbird Hotel by Daisy James @daisyjamesbooks @rararesources

Patience by Victoria Scott:

Blog Tour: Patience by Victoria Scott @AuthorVScott @Aria_Fiction

Merry Go Round by Sarah Toll:

Merry Go Round by Sarah Toll @zooloo2008 #zooloosbooktours

Lil’s Bus Trip by Judy Leigh:

Lil’s Bus Trip by Judy Leigh @JudyLeighWriter @bookandtonic @rararesources

Ouija by Zoé-Lee O’ Farrell:

QMP Horror Blog Tour: Ouija by Zoé Lee O’ Farrell (QMP Book 2)For Ouija @zooloo2008 @QuestionPress Hashtags #Ouija #QMPHorror #QuestionMarkPress #ZooloosBookTours

I did the Dewey’s Summer Reverse Readathon again and was a co-host for hour 9 on their blog: https://justkatherineblog.wordpress.com/2021/08/07/hour-9-summer-book-recommendations/

as well as log my own progress during the event:

Dewey’s Summer Reverse Readathon Progress

I was especially excited to review A Sky Full of Stars by Dani Atkins:

A Sky Full of Stars by Dani Atkins @AtkinsDani @Aria_Fiction

This month, I did more “life” posts, starting with my experience of the Pfizer coronavirus vaccine:

My Experience of Coronavirus Vaccination (Pfizer)

Then, I decided to review a wheelchair cushion I had years ago:

Review: Vicair Twin Wheelchair Cushion (Discontinued model)

as well as blog about my experience of 2-point pelvic wheelchair pelvic positioning belts:

My Experience of 2 Point Wheelchair Pelvic Positioning Belts

My ” Sunday with a Sassy Shopaholic” series is back:

Sunday with a Sassy Shopaholic: plus Review- Cien Skin Foodies Cleansing Face Scrub with Coconut

My Experience of 2 Point Wheelchair Pelvic Positioning Belts

A pelvic belt is part of the wheelchair positioning I need because I have a rotated pelvis and semi-dislocated hips as well as scoliosis (a curve in my spine) , kyphosis (slumped posture) and lordosis (a larger inward spinal curve at the lumbar spine).

A 2 point belt attaches to a wheelchair like a standard seatbelt, in two places and a 4 point one attaches in four.

I require a belt that can be tightened on both sides of my hips and pelvis so each side is supported but it has to be done by someone as I don’t have the hand strength, coordination or dexterity to do so myself. There are padded and unpadded belts and I have tried both but I prefer padded for comfort.

Even when the belt is tightened, my lower body slides underneath it and I slip forward easily. The belt also moves upwards, changing its position and therefore the support it gives me. It feels almost like I have no support from the belt when my body slips which is complicated by my trunk and head control so I can move involuntarily and it has been especially worrying at times when going over uneven ground or having my wheelchair moved in an unexpected direction (not at speed) has made me slip so badly that, were it not for the belt, the force with which my wheelchair wheels hit the uneven ground would have made me fall out of my wheelchair.

After my negative experience with these kind of belts, I am going to try a 4 point belt which has 2 extra pieces of material to keep the belt from moving around and to help me feel safer. 4 point belts are meant to help better with hypertonia (high muscle tone) as well as spasticity which is what I have, although my tone can vary due to my involuntary movements and especially if I am tired.

I’m looking forward to getting a new kind of belt and hope it helps better than a 2 point one.