I received one or more of the products mentioned above for free using Tomoson.com. Regardless, I only recommend products or services I use personally and believe will be good for my readers.
This book is about Sage who falls for a man 10 years younger…did she really find love? Can love overcome the age difference?
The difference between my husband and myself is 11 years he is 11 years older so I enjoyed the part of the story which I related too. I think the relate-able part is why I agreed to do a review on one of the romance books. I don’t usually read romance books as I often think of the smutty books that are out there. I enjoyed the book because it was based off the authors own romance story. My husband and I have a age difference and It was nice to read that it happens with others out there as well. If you are looking for a good romance book…do not go any farther. Lori Ann Mitchell delivers a spicy love story that will have you smiling an dreaming in a world of sun, ocean, beaches, surfing, books, pastries, and did I mention beaches? this cold Michigan weather I loved being able to read and escape for a bit to a imaginary world full of sunshine and beaches.
Can love overcome an age difference of more than 10 years?
A contemporary romance unlike any other!
At thirty-two, Sage Drake has the world by the tail. She owns her own bookstore, in sunny Florida, and loves her work so much she lives in the apartment above the store. Then one day a young surfer strolls in, cadging free coffee and donuts from her little cafe ?.
His name is Derek Chambers, and he’s no regular surfer: he’s an author of a series of surfing travelogues, eager to do a book-signing or two at Sage’s store. She goes him one better by offering to host a series of writing workshops, with Derek as the star.
In return, Derek offers to teach Sage ”” who’s never learned ”” how to surf.
Will the two find love in the waves?
A romance book that I enjoyed reading…I cannot wait for more books by Lori Ann Mitchell.
5 out of 5 stars. Great short love story that’s not smutty they do exist
Waves Of Love: Contemporary Romance (Beach Read Book 1)
By Lori Ann Mitchell
Biography-Lori Ann Mitchell
I am considering doing a unboxing video on my YouTube channel. I love Annie’s Organic products there is bunny fruit snacks, cheddar snack mix Bunny Grahams and cheddar bunnies.
Bella will have snacks at school for a while. I think I could get Bella to help with some of the unboxing videos and blog reviews. What do you think? Should I do a unboxing video and post for my blog too. I have another great product coming up called a swirl veggie slicer and a eBook review. Leave a comment below and I will do unboxing videos if I get enough people who would be interested in watching Bella and I unbox some great products.
comment below if you are interested in products on my blog as well as the 22q info stuff.
What challenges do family’s face living with a rare disease and why should we care ?
This is a personal blog post, and it’s a detailed post of my experience for rare disease day.
Please grab a cup of coffee or tea and get comfy.
I am going to share what I took away from a trip to the Capital building in Lansing Michigan on rare disease proclamation day.
As a person living and raising a child with a rare genetic disorder called 22q11.2 deletion syndrome the reason why this day is very important is because we are able to have validation. Validation of not only our rare disorder but knowing about other types of rare disease that are out there that don’t even have a name also exist and we are not alone. I can say I know what I have but there are others who can’t yet know there is something different about them or their child. The challenges others face make the challenges we face with how mild or deletion effects us is heartbreaking and makes me feel so blessed that I have 22q11.2 deletion syndrome. I am not taking away the symptoms that need treatment with our disorder or the fact that we are dealing with a lot of our own medical challenges but putting into the entire picture of health into perspective by seeing how much we could have on top of what we don’t have is blessing all in it’s own.
Having a group of people with different disorders both Adults and children there at the capital who are living with this disorder and rallying to be a voice for each other to support one another and not compete over who knows more was refreshing from being in the online support groups. I enjoyed the interpersonal interactions with some of the other family and making connections with some very proactive advocates. There was no puffing each-other up or down playing any person illness vs the others like we run into online there was no hiding behind a computer screen. It was all out there in the flesh and everyone venerable to not only those who stood up and spoke up but the emotional reactions of everyone who was listening. I love sharing just straight up facts about what rare life was all about.
The people speaking were very brave. I didn’t get up and share my story I missed the sign up deadline and I didn’t get that information about how to do so until I got there. So here I am typing behind my blog and hopes that maybe next year I will get up and share my story.
There are people who chocked back tears and I am going to leave names out because I haven’t asked them to share their story’s but I feel it’s the facts that they struggle with that need to be addressed by our congress members. Congress I think it’s time to step up and help these family’s get the support they need to take care of themselves and their children. I would think if you put yourself in the shoes of the people you would understand why there is a strong need to learn how life with a rare disorder is so very challenging.
What if it was one of your own family members who was facing these challenges what would you do ? Where would you look for resources ? What if you were low income and on Medicaid with children’s special health care that’s what I face with my own family. The heart breaking story’s I am about to share are people who have been facing challenges of not having much needed services provided or knowing where to look to get the assistance they need. At the time of diagnoses before diagnoses I can attest that nobody told me what resources were out there I have to become my own expert and know more then the doctors and convince doctors with PHD that I knew more then they did about a disorder they knew nothing about. You know I am not the only person who had to experience the fear and frustration that knowing more then a doctor and how it would hinder the life of the person living with the disorder not being able to get tested or treatment because of not knowing where to look or who to turn too. There is a saying that knowledge is power that awareness alone is enough but Knowledge is just the stepping stone because Doctors with out knowledge is power to keep us the little people down and suppressed in fear and not able to take a stand against the self important Phd holders they in fact started at a basic human form just like you and I do and have only read some more books that’s the difference between doctors and us. Doctors don’t like to admit they do not know no different then we hate admiring we don’t know how to find services we need or where to turn to after we get diagnosed. It is often frustrating to have to help the doctors understand the importance of how the rare genetic disorders effect our lives.
Children special health care services stop paying for medications and other services once the child turns 21 years old and are cut off if you have multiple health issues try finding and keeping full time work with the benefits that are needed. I didn’t know I had 22q11.2 deletion syndrome until I was 21. I also don’t have health insurance. I can’t work either. That is a huge challenge that is not needed for family’s with a rare genetic disorder when taking care of their health issues is a challenge all on it’s own. The other frustration family’s with rare genetic disorders face is legislation of capping of co pays because my daughter has a rare disorder the insurance company’s can not provide coverage unless there is a code.
ssi disquaifed my child because they didn’t know what 22q11.2 deletion is I had to spend time appealing the process and fighting with them I could have spend that time I used filling out all those medical papers and having more doctors appointments then needed and spent more time with my child. Do you know the code for 22q11.2 deletion syndrome? no I bet you don’t even if you work in medical billing. So many of the other rare disorders what if what the family’s rare disorder don’t have a name how is treatment provided then?
Groups of disorders are funded by research but what happens after those research study’s are over with ? what happens to all of that private data and information is shared by people if there are so many research study’s out there what stops a cure or treatment from being given to the public even if treating symptoms are all that can come out of these study.
We often know more then professionals doctors nurses teachers and many more so called professionals with Phds and trying to tell the people with Phds that we know more. How do we get our voices heard? simple we alley up and stand together because we are rare when we are alone but together we are strong is the slogan I took and learned on rare disease day.
Our voices are not very loud at the moment our voices are a quiet whisper among the medical profession but with a blog post here and a story shared there to members of congress we can not be ignored any longer take my blog post for example this isn’t going to go down from the internet and it will have a national audience because I have webhosting and my own domain which I pay for only I can take it down. It’s out there our challenges we face having a rare genetic disorder now that you know what issues we face what are you going to do to help us bond together and fix this. You can become a donor there are needs and people are able to be matched up easily What every parent and child needs is a huge list beyond the basics of food shelter and clothing living on low income I have my own personal experience in poverty just trying to make the needs of my own family’s basic needs before providing any extra services we needed such as leg braces for my daughter who not only has cerebral palsy but 22q11.2 deletion as well. Price tag for medical bet is out of control just going to get seen by a doctor is 150 at the er not including medical testing which I have multiple of bills to prove the hardships we face as a family with a rare genetic disorder do doctors need to get paid sure but do doctors who don’t even know what our disorder is at the ER need to get paid 150 just for looking at them if you don’t have insurance I think not?
What do we do when we do not know what is happening to our bodies? or are even sure what steps to take are to find the services and care we need. Many people don’t know there is charity care at hospitals for people like me who can not afford to pay 150 medical bill and charity care is income based then if we get it we are looked at like we are a charity case. What do we do when we face depression fear anger and guild especially when we have passed on this rare disorder to our own children.
Struggles of what it is like to be a mother of a child with a rare disorder is in many of my own blog post but who wants to read the sad blog post all the time. All I can do is dust myself off and see what I can do vs focusing on what I can’t do. There is infectious strength when we are gathered together by a large group of number of people who are facing the same struggles of life with a rare disorder. The need for continued funding after those study’s are done fore example would be one thing that could take a burden of for many family’s so we don’t feel like we are alone and forgotten. Local and national fund raising efforts to help keep children alive with knowledge and hope and compassion example on blogs like mine where you can find some type of hope inspiration and compassion that you are not alone are out there but not very viable to congress members where bloggers voices matter.
Let’s touch the subject of military family’s do they really have to endure this crap treatment when they get back home too their family’s? Don’t you think military family’s been though enough defending a country that shows lack of respect for service men and women by members of congress who get to sit in big comfy chairs and tell them how it’s going to be when they have no clue the reality’s of what life really is like military family or not we need more people in office who actually care about the health and welbeing of the people.
you don’t imigine having a child or being diagnosed with rare disorders and not knowing what’s it’s called or where to go for services or treatment can be a huge challenge. Did you know that Medicaid will not always cover out of state travel and some times we have to go out of state just to find a doctor who knows what our disorders are. Specialist in local areas are lacking and we often wonder if clinical trials are our only hope for treatment at a risk that treatment may or may not work at the risk that after the clinical trial it goes no where and it was a waste of time.
Medical equipment such as Wheel chair cost are not covered by Medicaid if it is it’s only one manual vs a power chair and if you have two children you are totally screwed and are left on your own yet again. The rare diseases do not get approved for ramps or conversions for vans how do you transport children who need these medical supplies and services there for taking more money out of parents pockets from the jobs they have to work 40 hours plus the money does not go on children fun stuff forget trips to Disney land or vacations like the president takes with his family. Finding in home respite care coverage is next to impossible when you have a rare disorder because there is not those right codes that are needed for billing purposes so then what happens? were again alone but together if we continue to share with others how much we go though and struggle as a family.
Primary care giving causes many health issues of our own health issues and can prevent full care being able to give to children pulling our backs out, health issues of our own if we too have the rare genetic disorder like in my case the cost of treatment for therapy and medications for care givers is added to that bill because the stress the toll of fighting with insurance company’s and doctors and nurses and teachers can cause. Fear of being let down and no one around us are able to understand unless they too are experience the same frustrations of all the multiple doctors appointments only ending up doing the jobs for doctors and school teachers because they can not fathom what it is like to live with rare genetic disorder no different then we can fathom what life would be like if we lived with out a genetic disorder. So many children die because the lack of knowledge that is out there I sadly lost my brother when he was 6 years old. My father and all three half siblings have this same disorder 22q11.2 deletion syndrome the same disorder that myself and my own daughter have and I am for one am exhausted and fed up with not having my voice heard for funding of research for adults with this disorder and many other rare. Two working parents income on a full time with benefits are needed but with this job economy many parents are one working parent homes because someone needs to be there 24/7 taking care of a child with multiple health issues that can go arise at any given moment.
What does anyone guide us when we are diagnosed? Medicaid wavers are useless waste of time because denial after denials are going to happen when there is no code for a rare disorder not listed.
how do we get doctors to comprehend that a mom with out a phd knows more then they do ?
My Daughter is working on a fundraiser to help kids with heart disease.
This is her message to you all my reads.
Personal Page link:
“I’m joining millions of others to help save lives with the American Heart Association!
At my school, I’m learning how I can help make a difference by raising lifesaving donations to help kids with heart disease. I’m also learning about my own heart, and how to keep it healthy. And I’m getting active!
I’m excited about raising money for other kids – kids with hearts that don’t exactly work right and to help fund new medicines and treatments to be discovered.
I have a goal to raise $250.”
Please help me make a difference! Thank you! – See more at: http://jumphoops2015mwa.kintera.org/faf/donorReg/donorPledge.asp?ievent=1116303&supId=419658868#donate
Looking get some support from a 22q11.2 deletion syndrome Adult raising a family of her own with a child who also has 22q11.2 ?
I am going to have a Facebook chat to help get some questions answered. Just looking into the details on how to do so since I am not a doctor, I am simply offering my personal opinions.
I’m open to setting up a event here on my page and starting
a Q and A session.
What do you think It is my way of Thanking all of the blog readers and parents who have come to me for support online.
Let me know in the comments below.
It has been a while since my last post I must apologize because the longer apart my post are the longer my post have to be. Bare with me it’s not too long.
I have had many moments this month where I look back at where our family was almost this time two years ago and I’m still in shocked at how far we have come and how much we have grown together. In fact one of our mile stones that our family has is Adam and I have been together for 10 years February 23 back in 2005. When we first laid eyes on each other and had that magical kiss at the Greyhound bus station. That person that got off the bus then is so very different then the person typing away at my keyboard. I am not just talking about how I look on the outside but how I feel on the insides. We met though a mutual friend that introduced us and we like to say we ordered each other online.
I had a similar adventure with my first car shopping experience which was not as daunting as I thought it was going to be. We ordered our car online or should I say found on autotrader and a good friend of ours to give us some feedback and tips. Hubby and our buddy went to shop for cars on my Birthday which is another milestone all of it’s own I’m 32 and my birthday is Feb 10. We looked at a colbolt, impala and a few others but mine and hubby’s favorite was the Lincoln Continental what car. I like sporty cars. Who knew? There were so many cars one car we placed a offer on plus a trade in for our van but the guy didn’t budge and we couldn’t offer any other price but we sure loved the Lincon car. We decided to look and see at other cars and then thought about cars further away we got lucky and found one in Ohio that met the price budget we had and met the miles we were looking for and found a 2002 Lincoln Continental.
I am for one not a car person, the reason is I don’t even drive. Hubby insisted I have input as it was our money that was going to be spent on this thing and it was a huge purchase. He had a few things he wanted but I got to pick the look feel and ect. I did my research on autotradder and found all kinds of Lincon’s so did my hubby and our buddy, we ended up liking this car that was in Ohio just the right miles and perfect price. Off the guys went to pick up the car while I stayed home with the kids. The Michigan to Ohio drive for the guys was in a blizzard. After a drive to Ohio in a blizzard in white out conditions (yes I’m surrounded by crazy people) and more then half of our income tax refund spent. We own A very nice used car that is almost brand new. Low miles and a nice price tag that fit our budget and we finally get to sell the mommy van and ride in style. Did I mention they did this on Valentines day? who needs flowers when you can get a car?
There is so much more things that have kept me busy this month from blogging and I’ll post about that stuff in another post. I just wanted to share some of the good news that we finally found our car and were both very happy with it.
I ordered the car online just like I ordered my husband online. I like pretty sporty cars apparently who knew. My first time car shopping was rather fun. What was your first time car shopping like ? what do you think of the car? let me know in the comment box.
Thanks for visiting
A new ADHD med started tonight and it is a success (so far). Bella has asked if we can keep it. Bella has noticed how much more she can think and her head does not feel funny she says.
We have a name for Bella’s non-epileptic spells they are called vego vesso there is no med that will help with it in fact meds for Vego vesso spells will hurt more then they help. We can watch, monitor, and call the neurologist if she has any spells. Bella falls asleep in class and has had some impulse control issues here at home but so far no changes to behavior modifications.
Bella, Adam and I all love her new neurologist. Bella will soon see doctor for meds waiting on a referral but the neurologist is glad to help until Bella gets an appointment with the med doctor she referred us to. Bella started to see a therapist and we all like her and has been helpful.
Bella has started at Western for Bella’s speech and it is every Monday at 5. Bella has 80% hypersnale speech it’s called vpi. We are correcting her hypersnale speech and are considering a palatal lift it looks like a retainer I am very excited and we have been very busy dealing with this doctor and that doctor. I have called Michigan alliance for families and did a intake for a referral for a advocate to show up for Bella’s Iep meetings and parent teacher conferences to help with any future issues with school. I am sending a copy of the IEP and emails to help assist with the first step of helping learn how to be a better advocate for my child in her IEP. Next week Bella will see a gasterologist Bella wet’s the bed at night still and wear’s goodnight she has finally started to sleep soundly at night with her leg braces for her cebreal palsy and muscle relaxer that she is feeling rested finally without crying in pains from the knots behind her legs.
Bella and I both got new glasses we can see with our new glasses and now both of us are saying hey I can see this now and that were comparing notes. We have astigitizm, cannot see far. The only difference between her eyes and mine is I have the first stages of cataracts, which are little dots behind my eyes that cause migraines and I see flashes since wearing glasses I can focus more on what I am typing and can spend more time at the computer working on my blog and social media stuff.
I turned 32 this week it was not nearly as bad of a feeling like turning 30. I do like to tell everyone I turned 21 again. I got a new hairdo and my look feels completely different yet I feel more like myself. Every year that I get older I am often taken a moment to self reflect over how much we have achieved over the past year. This year we have done so much and life is going well. I think I may have found that balance button but I know as soon as I say it another crisis will arrive so I’m not going to jinks myself but rather just keep plugging away one minute at a time.
I live in Sw Michigan, I shop at Wall-Mart, Meijers and Target the only place that I could redeem the coupons was at Target. Wall-mart didn’t carry the products neither did Meijers I went to Wall-mart and Meijers first not thinking about doing a product location just to see if the local stores had the products which they didn’t. So if you live in Michigan Target is the place to get them especially if you live in a small town in Michigan like I do.
Bella loves after school snack time. I got the coupons to get these products free at Target from Influenster in exchange for my honest opinion. The Rudis bread was not called Rudis here it was in fact called udis in Kalamazoo, Mi or at least the only thing that was stocked at my location in Kalamazoo was Udis. Rudis bread is a freezer item and it wasn’t stocked I couldn’t get to try the bread and was a bit bummed about it as it took forever to look for it. I didn’t get the bread but we got everything else and Bella says it’s 5 out of 5 stars. Bella loves cheese, crackers, yogurt and the fruit snacks. Bella also loves the juices we still have some I think I’m going to continue buying the fruit juice it comes in handy for traveling in the car back and forth to her doctors appointments. We also got Pizza Bagels, and Bella was so excited she wanted to try it as soon as we got to the car and didn’t want to wait until we got home. I love the convenient packing’s and I was able to meet the request for her to give it a try. When we got home I put the rest of the stuff on a plate at least what was left of it and she was glad to be a model for the products. I’m keeping this review short because the photos speak more words about how much Bella likes the snacks more then I can type about how much she loves the snacks.
I received these products complimentary from Influenster for testing purposes.
|Annie’s Crackers||#RockTheLunchbox||@annieshomegrown||Annie’s Homegrown|
|Honest Kids||#RockTheLunchbox||@HonestTea||Honest Tea|
|Rudi’s Bakery Bread||#RockTheLunchbox||@rudisorganic||Rudi’s Organic Bakery|
|Applegate HALF TIME||#RockTheLunchbox||@Applegate||Applegate|
|Annie’s Frozen Snacks||#AnniesHomegrown||@annieshomegrown||Annie’s Homegrown