Meet n Greet with Pamela a blogger

Putting older posts up but here is a great one that I did with one of my favorite bloggers You will have to visit the links below to see her website and the the cute photos she has up because I did not manage to save every single post. I am just putting up the content I have had backed up from before I made the switch from wordpress to squarespace. It takes a lot of time and work to put together a website and my friend pamela knows all of the hard work it takes to make a successful blog I have had so many 22q friends and I mean almost every single oen of you ask me how they too can run a blog. Pamela is my go to girl for all things blog when it comes to asking her about questions I have.

Meet and Greet with Pamela Marks Inspirational Blogger Meet and Greet is a way for my readers to learn about other bloggers and for other blogger readers to learn about me. Pamela and I interviewed each other if you want to see her interview of me you’ll have to check out her blog after reading this post. Happy Halloween everyone. Today on meet and greet Friday we are celebrating Halloween! Not only are we celebrating Halloween but I wanted to introduce you to another blogging friend of mine named Pamela Marks Pamela and I have a mutual friend named Tina and we connected over a site called gather a few years back. Where we published our articles and earned gift cards for doing so. I loved sites like that and there hasn’t been any other site like it. Gather was a a site it’s no longer up and running. Let’s meet Pamela everyone say “Hi Pamela!”

This is Pamela Marks owner of MarksvilleandMe.com

Tell me a little about yourself and your blog? My name is Pamela Marks and my blog is called MarksvilleandMe I was once told I was a drama queen so my husband thought it would suit our family just well to have our own place to live too. So Marksville it was. Oddly enough we don’t have nearly as much drama as the one who said this. My husband Dennis and I just celebrated our 25th Anniversary. Together we have 6 children 5 bio and one acquired along the way. Our son Buke (nick name) who is 24, our daughters Samantha 21, Dennise 18, Deanna 12, Dorothy 7, and our acquired son Bryan 18. My son Buke is now married to the love of his life Taylor she is 22. My daughter Samantha is in a long term relationship with David and together they gave us two grand daughters Lilly 4, and Lainy 1. I have several blogs under MarksvilleandMe.com such as One Mother’s account of daily life which I really don’t have time to update everyday, Pam’s fight to lose weight which will be being used more often soon as I am about to go through the biggest decision in our lives. Since family is the most important to me that is what I blog about most. even in my reviews of products you will find little stories about our family and myself. What was your inspiration when you started blogging? Blogging kind of came easily to me. I love to talk so writing was a given. I love to tell others about what is going on in our lives as well as telling others about products we have tried, places we have been. I have always been rather sickly and as a child we didn’t go far beyond our state matter of fact it was just NY and Massachusetts. We did the county fair, but never went to the mall, theme parks etc, so I enjoy being able to bring my children to places I wasn’t able to go to. I live through their eyes. For me blogging is therapeutic , and telling others about products is just fun. What’s hiding in your purse? I have a purse but most of the time because of my fibromyalgia I only care my wallet with me. Hiding in my purse would be lipgloss, shopping cards, pen, pad, a book, and my ipad mini. Who is your favorite author ? I have been reading and writing since I was 3 years old so I pretty much read everything that I can get my hands on. Stephen King used to be a favorite and is still towards the top but lately I have been more into Laurell K Hamilton, from childhood it would have been Carolyn Keene and Madeleine L’Engle, my favorite kind of story to read would be stories from the Holocaust. People complain how bad the world is today but they have no idea how it was for people during that era in time. It just amazes me how people can forget genocide is very real. What your favorite top 5 songs on your play list ? Beleive or not I don’t have a playlist but my favorite songs always go back to my home church and songs we sang there. Unto thee o lord and Jesus is here right now. No matter how much I look I can not find anyone that sings any of the songs I learned there as good as our church does. some more popular songs that my readers might know would be Jesus take the wheel by Carrie Underwood, Praise you in the storm by Casting Crowns and I have decided by Amy Grant How long have you been blogging ? I have been writing on the internet for about 15 years but I didn’t start blogging like I do now until about 3 years ago, with the last 2 years being more serious. How did you develop your following on social media ? I am naturally a social butterfly in life and on the net. I enjoy meeting new people and learning about their lives. What is your favorite thing to do with your family ? Just spending time with them, telling stories, eating, and having a good time. Want to check out the interview pamela marks did with me check it out here http://www.marksvilleandme.com/2015/10/meet-and-greet-with-amanda-ripsam-from.html You can find Pamela links to her social media accounts here MarksvilleandMe.com

https://www.facebook.com/MarksvilleandMe http://pamsfighttoloseweight.blogspot.com/ http://pamelamarks.blogspot.com/ http://www.marksvilleandme.com/

Meet and Greets Mommies Quiet Place stories of hope

est _ 2014.jpg

I would do this even if I had only one follower. It took me so long to get to a good place in my life. I'm finally where I need to be. I will never give up on my dream of becoming an influencer and providing value for others who want to live with hope while having something so many feel hopeless about a genetic deletion on the 22q chromosome can be a wake up call and a reminder of how short life is. I'm realizing how much control we have over our feelings, emotions, happiness, and success. We need to stop talking about the things we want to accomplish and start doing them.

I was born and raised in Toronto Ontario Canada and have a father and 3 siblings who have 22q one past away when he was 6 years old. I myself have 22q and I am raising my child. I know the odds are not always stack in our favor but it's what we choose to do with our story that can make or break us. I have been in that dark place over 10 years ago when I was 21 and young and first learned I too had 22q and others who targeted me and didn't want me to be apart of things because I was a adult who had 22q and not a child a few years later I gave birth to Bella and she also has 22q sometimes we just need a different prespective. Does 22q suck ? do I hate 22q sometimes sure but if I lived like that daily that would mean I suck and I hate pieces of myself which I choose not to. I choose to let my light shine and blog and inspired others to do the exact same thing who are following in my foot steps because I gave them some kind of hope. So they tell me. Not always getting the mentions or the shootouts and being ignored sucks having 22q don't suck nearly as bad as not having that support. So I created this website for others who are like me that didn't fit into the cookie cutter mode.

This place here is a safe place where all are welcome. That fear mongering is not aloud on this page and we are all connected because we are affected by someone we love who has 22q or have it too.

Remember my meet and greets they are back by popular demand if you would like to share your story on my website where thousands of readers read my blog posts monthly feel free to leave me a message.

Hope every one had a great November as it is 22q awareness month. Knowledge is hope! Happy thanksgiving to friends and family's who are celebrating in the usa.

Meet & Greet Kim and let's talk about IVF

Kim.jpg

What would you do if you couldn’t have children naturally?

By Amanda Ripsam as told from kim owner of Miss Mental

Hello friends meet my friend kim.

 

Kim and I chatted via Facebook for this meet and greet blog post

I asked Kim to describe her experience trying IVF

 

It all started three years ago, I was a 24-year-old girl and my boyfriend, and I decided to have children, or that's how we thought about it. Most of our friends already had kids or were pregnant, so we thought we wouldn't be far behind.

 

So I went to the doctor and told him about my pregnancy wish, He took my IUD out and told me to take vitamin D & folic acid. The following year we kept trying every month, but the only thing that followed was disappointment.

 

The moment we realized that you couldn't just 'choose' to have a baby was hard on us.  What followed was a lengthy and time-consuming process.

 

The first time we went to the OB-gyn we were both tested for STD's. They did several other blood tests and an internal echo of my uterus. The doctor also examined my boyfriend's sperm.

 

A few weeks later we heard the results. My boyfriend's sperm count was too low for a natural pregnancy. They ran some tests to see if anything was causing it, but they never found a reason.  From that moment we knew we had to do IVF, or in our case ICSI, it's the same procedure but the lab process is a little different.

 

With IVF they mix the egg and sperm in the lab, and the sperm naturally penetrates the egg. With ICSI they inject the sperm in the egg, this method is used when the quantity or quality of the sperm is low.

 

Before you can start an IVF procedure, they run many tests.  The doctor didn't see any weird things during my echo, but she wanted to make sure everything was ok before I started. She did a laparoscopic operation to see if my ovaries are open, this was the case. However, she found endometriosis on my uterus. The doctor removed the spots with the hope that I would easier get pregnant during IVF.

 

I had to recover six weeks before I could continue with the IVF procedure.

The next appointment was with the IVF nurses. They did an internal echo to see how many eggs my body approximately makes. You usually have one egg that rips during your cycle, and the other eggs die, but during IVF you want to have as many eggs as possible ripping. I had 21 eggs, which is excellent for my age.  After that appointment, I had another about the hormones I was going to inject, and how I had to do it. Everyone's medication plan is different, because everyone's body is different.

 

On the first day of your menstruation, you write an email to the clinic. They will make an appointment with you for the 3rd day. You will go in for an echo, and you start injecting the first hormone that will stimulate the ripping of multiple eggs. After a few days, you go back to the hospital for another echo; you will start using another hormone that makes sure that you won't ovulate too early because they want to harvest the eggs at the right moment when they are perfectly ripe. You might have to come in several days to see if they are ready yet.

 

Once the eggs are ready, the man has to produce his sperm in a cup, and they start harvesting the eggs. They do this with a needle they bring in through your vagina into your ovaries, in most countries, they do this under anesthesia. Once the eggs are harvested, they go straight to the lab, and you hear how many eggs you produced.

 

The next day you hear how many healthy embryos you have and you make an appointment for insemination. The extra embryos can be frozen for later use.

 

After insemination, you have to wait approximately two weeks before you know if you are pregnant or not. During this time you use hormones to get your body into a regular cycle again and to support a possible pregnancy.

 

Women that have irregular cycles will use hormones from the start to help them ovulate.

 

There is no telling how anyone will react to an IVF procedure. It's challenging both physically and mentally. There is a lot of waiting involved and not getting pregnant after all your hard work is maddening. You can also expect to have headaches, hot flashes, mood swings, doubts, anxiety and several other symptoms, but everyone reacts differently to the hormones.

You also need to get over the fact that you have to inject yourself with a needle.

 

If you are trying to get pregnant you know how hard the 2 weeks are between your ovulation and the moment you can test. When you have been trying for so long and are now doing IVF it's only harder. You have to try to stay distracted and hope for the best. If the test is positive you can make a schedule for an early echo at 6 weeks, if not the whole IVF cycles starts again. If they harvested eggs the month prior you have to wait a month to let your ovaries calm down again.

 

IVF is very expensive; there are groups for women that share additional medication they no longer need. It's a lengthy and challenging road, but if you want a child, it's worth it. If you feel insecure about doing IVF, you can ask a therapist or doula to support you on your journey.  I talk to a therapist every 14 days, to see how I am doing because you can't underestimate a procedure like this.

 

At the time I'm writing this I'm in my first ICSI cycle, hoping for the best. The chances for ICSI in my age group are approximately 30% per try. and in general ivf has an

25-30% chance of succeeding. It really depends a lot on the clinic though, So if this is something you want to do, do your research before you begin. There are lots of groups for support online and it's really useful to be part of one. You receive so much information and support in those groups. It can really help you through it.

 

Just a short list of

Fertility treatment: Your options at a glance

  • Fertility drugs.

  • Surgery.

  • Intrauterine insemination (IUI)

  • In vitro fertilization (IVF)

  • Intracytoplasmic sperm injection (ICSI)

  • Gamete intrafallopian transfer (GIFT)

  • Zygote intrafallopian transfer (ZIFT)

  • Donor eggs and embryos.

https://ivf-worldwide.com/ is a great site for more information if you are interested in learning about Ivf.

Kim website is. https://miss-mental.com 

 

#

 

Meet and Greet With Rebecca Osberg an adult with 22q

Hello everyone

I have 22q Rebecca has 22q do you? have you been tested why or why not?

I have 22q Rebecca has 22q do you? have you been tested why or why not?

Warning this post is a long one but it’s been ages since I had a blog post up. I don’t think you guys would mind.

proclamation.jpg

I am in the process of putting together a newsletter for all of you wonderful subscribers. I checked my email sub list and there is over 1,000 of you waiting for a newsletter I thought I would post a little something together for everyone before Christmas to give everyone something to read and catch up on.

Feel free to share with friends and family.

Let’s go to the old fashion grass roots way of spreading awareness.

I was so wrapped up in reading everyone else’s post about what they have been doing for bring awareness for 22q last month was 22q awareness month and I’m so proud of the 22q community they really have grown together and the moms and adults are supporting one another and playing nice. It’s been amazing to see the new fun things that are happening. I inspired so many people to start blogs and run their own support groups both online and locally. It a growing trend this 22q stuff. If you want to know more I have a faq tab on my page that links to the foundations website.

I still get calls and asked if I could parent mentor so and so with a kid who has 22q sometimes it’s a kid with 22q and xyx dual diagosnes are poping up all over now that doctors are learning more.

My own kid has 22q and mild cp from high risk complications at birth.

I am bringing back

Meet and Greets are back by popular demand because my inbox is flooded and I actually might need an assistant to help me out.

I have had a lot of different people email me their stories and over time I will add a different story and feature one or two stories a month featuring someone with a genetic disorder rare or other wise such as 22q11.2 deletion syndrome.

Here is another adult who is active in the 22q community who has a heart for spreading awareness for 22q.

What is it that we need to do to spread awareness? it’s by sharing our stories, our truth’s. No two people who have 22q are the exact same. We are not cookie cutters or carbon clones.

The majory of 22q kids does xyz does not apply to these rules. We grow up not out of 22q #growupnotout. and we speak up and spread awareness by one Doctor, nurse and teacher at a time. Yes I said professionals with letters behind their names because often we are over looked because we don’t have a degree so we are looked upon as less than. If you are an adult with 22q you are often brushed aside and not taken seriously.

That’s why I started my website to show we can and will wipe our own butts and raise awareness with out picture of pitty to earn a dollar with posters plastered of children who need funds. My daughter and I were homeless at one point living with our pastor where was the support and the funds from any of those places that raise money for our syndrome. that’s why there is people like Rebecca and I who speak up and raise awareness with out picking out of our friends pocket books for a dollar for photos of our friends.

The first step is to get on board with the correct name so that there is a dx code. there is one for digeroge syndrome not one for 22q or velocardiofacial there is so many names for this syndrome that we have to spread awareness based off what our own personal experiences

A genetic fish test is how you get tested with 22q. Usually there is no reason to test unless you have a child with 22q. I knew I had 22q before I had my daughter Bella who is now 11 I had her when I was a child in my 20’s. I only found out because my siblings have it 3 of them one of them passed away when he was 6 years old. My father also has it but there is so much hushing about this truth this side of it because they don’t want the word really out for awareness just for the funds. I really want to get the word out to every state and so does my friend Rebecca.

I am 35 and have lived live and enjoyed being married for the past 13 years we have had our ups and downs but I would have it any other way. I am also a step mom to 3 young adults who are none 22q. I know some who don’t have 22q who can’t keep a marriage together the stress of raising a child with 22q it’s difficult I know I get it I have first hand personal experience from all different angles of 22q. From panic and adhd to multiple doctor visits which I have blogged about over the years on the fb fan page.

So here is a post I want to share another story about another adult she does not have a child with 22q but she is doing great things to bring awareness. Meet Rebecca I shared about her before but I cought up with her since and she shared about her journey.

How to do a Proclamation in your State 1. Contact your Governor And Find out the contact number for the Proclamation Office in your State. 2. Some States you have to fill out a Proclamation on their website. 3. Most States you have to do it 30 days ahead of time. 4. Most States require a person who Has 22Q11.2 to do the Proclamation. 5. Follow the wording on the Proclamation below

For more information Call or email

Rebecca Osberg 205-557-0536 22qalabama@gmail.com

By Amanda Ripsam

Introducing Rebecca Osberg

Rebecca’s story

 

My Story: Rebecca Crutchfield Osberg

By Amanda Ripsam

I was diagnosed with 22q11.2 at age 38. However, I was born with 22q11.2. I have been in and out of hospitals from birth until young adult years. I was sick with Bronchitis , Pneumonia,  ear infections, sinus infections, Asthmatic Bronchitis I have the low immune from 22q11.2. I also have CHD related to 22q11.2. I was born with a right sided aorta, VSD : Ventral Septal Defect, and heart murmur. At age 3 years old I lost many of my teeth , due to teeth crumbling from 22q11.2 ,  and on many antibiotics .  I remember being in the oxygen tent many times. I used to get 9 shots a day as an infant and toddler. My dad bought my first teddy bear while I was in the hospital. Doctors offices and hospitals seemed to be my second home from infant to young adult years.

Adult has slowed down some. I was the typical 22q baby, and no one new. In elementary,

I was still sick with recurring ear infections, bronchitis, and pneumonia, and kidney infections.  Still, in and out of doctors offices. School in early years was difficult, especially having a learning disability, and not even knowing about it.I had much trouble with reading and math. Especially basic math. My dad drilled me many times. It was very frustrating at times. In the summer, I had extra help with reading. In Junior High and High school, I still had trouble in basic math and science.  The harder things seemed easier for me. I did great in Algebra and Geometry. In high school, I developed hyper nasal speech and tetany, however, my low calcium levels did not show up on lab work until about age 24. 

I have now learned that lab works can be normal, and calcium can fluctuate. I had many nerve test done and no one knew what caused my hyper nasal speech.I finished high school with a B average, and after high school, went on to college to get my LPN degree. Passing was a B average. I passed nursing boards the first time. Getting my LPN license was my first biggest accomplishment,  except for my first biggest,

At age 13 , my strong Faith. I had trouble in Nursing jobs because of the low immune. I stayed sick, taking care of sick people. And, I had trouble with the social problems of 22q.11.2. I wish I knew then what I Know now about the ADA American Disabilities Act, and I could have received work accommodations. In young adult years, I developed Bipolar Disorder, and then Bipolar Affective Disorder, which is caused from 22q11.2. I am now medication controlled but have been in and out of many Counseling and hospitals. I have been in many traumatic and dangerous situations, because of not thinking clearly, cause from the emotional and social problems of 22q11.2 I was suicidal at the age of 13 and 18. However, at the age of 13,

I wasn’t aware of what was happening. My third biggest accomplishment was marrying my husband Tim. We have been married 18 years this Oct.2nd. We were not able to have any children , I assume because of my 22q11.2. However, we have been active in our church with the Van ministry with kids , and Senior Saints, and in our community. Since being diagnosed with 22q11.2, it has given me closure. I found the diagnosis online, and I had one awesome Physician who listened to me and the test was 22q11.2. She has done the Fish test to determine. I have been doing activities to raise awareness since being diagnosed. I was first with Dianne Altuna and the VCFSEF organization, hosting walks at our local mall. 

I received my first Resolution raising awareness for 22q. I had many Proclamations and Resolutions done since them. I am now with the 22q International Foundation, and on the Ancillary Board. I have hosted many zoo events with the 22q International Foundation, met many Governor officials. I have my own Radio Show, with WJEC FM. 100.7 and, my own TV show; called 22Q Alabama and the Awareness Show, with channel 8 of Hamilton and starting with My Mississippi and Channel 49, hopefully soon. I have a hugely supportive family, immediate, and extended. I have 1 sister, and foster sisters, a host of Nieces and Nephews, awesome parents who have given their all for me and my husband. And many church family and friends.  It is important to Raise Awareness for 22q11.2 because it is either diagnosed late in life or not at all. I do not want anything to face what I have faced. I have also been able to start a new non-profit for 22Q Alabama, and I was first appointed Deputy Commissioner Special Needs In the city of Sulligent Alabama, and now I am appointed Deputy Commissioner Special Needs in Lamar County Alabama. And it is an honor for the friends I have met all over the world. You are an inspiration.

Top left: Billy Rogers my Brother in law, my sister Tiffany Crutchfield Rogers, My Great Nephew

Mason Baughn, my Niece Kelly Baughn . Beside Kelly: Tristian Rogers and Jacey Rogers my nephews.

Rebecca osberg.jpg

Anna Claire Baughn my Great Niece. Beside my sister is my Dad Kenneth Crutchfield, my Mom Patsy

Nolen Crutchfield, Rebecca Crutchfield Osberg beside my mom, and above me is my husband Tim
Osberg. by Amanda Ripsam