Fear no more anxiety and I

Danny8.jpg

Anxiety and 22q It can be challanging having to face anxiety. Jesus is a great comfort when we are in times of trouble. We have to do our part as well. Pray and get our mind set right then use the coping skills and tools Doctors and therapist help given us. I recently have been examing my own anxiety issues and remembering the time of my Being in hospitals also can be tough even tougher when you are a mom who has a child with the same disorder. I've been in and our of doctors offices just like Bella has been while I was trying to find out my stomach issues and getting the diagonses of gasteropparies a damage to the vegas nerve was the root cause.
Nothing is too hard for God to handle and He will take care of us. We just have to keep pushing through our anxiety knowing God will help us and is always by our side "Cast all you anxiety on Him because He cares " 1 Peter 5:7 is a scripture I refer

Someting I have leaned is we have to do things scared any ways and even though we pray we might not hear the answer as soon as we pray. Things time time such as healing and handling big scary diagonses like 22q. I just know that God has our back no matter how awful the outcome turns out sometimes. If you don't belive in God that is okay I'm not hear to prach at you. you might even have a higher power sourse you perfer either way the devil or those thoughts like to sit on top of our shoulders telling us we are worthlese, why bother and then the cycle of depression and fear repeasts it's ulgly pattern. Anxiety is not from God. God is love peroid. Anxiety can not be managed alone it takes a lot of effort for someone with anxiety to do day to day task sometimes. I have a fear of driving on the high ways and taking test and a lot fear of public speaking is one of many my aniexty but finding that taking classes and learning how to cope best has helped. In terms of public speaking going to conferences has helped. I am I a world renounded speaker of course not but I have been sharing my story iwth a group of godly women every Monday night we are more like sisters now we shareed our ups as well as downs as we journey the 12 step program together. It has been 10 years since I had an over doses and today they did a clean tocken but I wasn't sure how long I have been clean for. Clean maning over dosing on my aniexty meds to help take away the anxiety. I did that 10 years ago just after my daughter was born it's not easy to admit on this blog but I'm sick and tired of people in foundations for this disorder not understanding exactly wwhat 22q is like with first hand perosnal experience I'm also a mom to a child with 22q and that makes it that much more are. I have a father and 3 siblings who have 22q and that makes me part of the exclueeded group because I know what 22q is and the experts don't want to be proven wrong. I have nothing to prove to them I jsut want to get the word out about our little known disorder and get the correct resouse and support in place instead of the stima of pills for people who struggle with issues are often looked at as werid with our with out 22q. I'm learning daily with reminds from God's direction how far I have come and I am enjoying where I am going. I was remind that I am in the season of rest and recovery but soon I might be aksed to share my journey with more then just a few close friends of mine. It took a lot of work to see the fearless confident women you see today. I worked on character defects step 7.1 in the recovery book and I went back to depression, anxiety and inpaitence. I remember a lot of the pain I had to endure just to get to this confident fun sometimes sickly from gasteroparies flair ups you all have come to know. I had to dig deep even taken a socail media break to focus on myself. People at first took offence to it becuase they assumed I didn't want to add them as a friend or help but I have a handful of parents I mentor I have my own stuff I had to work on and I'm so glad I did it has closed doors for me had me look deep at old past hurts and hang ups. Making a invetory of people who have hurt me and gone out of their way to sort of even to an extent blanck list me. I have a differnt truth then most ofther moms who have 22q I know the good bad and the ulgly parts of this syndrome and how it effects my own family. I can not give you a guide or a how to map for how you will manage your own issues with 22q. Each person with it is effected differently based on where the deltion is and family history. speaking of family my own parents are the top of this invetory lists then there are other minor supporting caracters who's rolls has helped shape my life. We are a product of our parents weather we agree with this or not My own father has 22q I do as well. He might disown me but that's nothing there's no denying. No matter how much I one day hope to find out I was adopted. I'm not I lookd into it when I was younger. I had outside influences other people who encouraged and support me some were godly women others so far away from god but had great loving supportive hearts. Over the years I have learned so much this past feb I had turned 36 and really have been reflecting on how far I have come along our family has come along. I use a lot of coping methods some even consider werid. One therpist told me to put ice cube in my hand to bring down the level of intensity of the anxiety. I thought they were nuts until I did it and you know my only thought was how cold that ice cube was suddenly what ever I was worried about at the moment settled down to a level from a 10 to a 8. I do many other tricks since and I even have my daughter using coping skills and tools. We have had to miss out on some theraphy sessions due to insurance issues. Bella has medicade back again and we are ready to start with the regular dr visis some more. Dealing with the school and Bella's visits caused some great aniexity 20 absences would put any parent into a panic. I looked up my rights and learned I could have her absences which all of them are excused to be waved as well as the letters the school sends to turancy. I also have to come up with a plan for a totur for Bella so she can get some help when she returns and catches up with out putting stress on the teachers to play catch up. In Micddle school Bella will have a lot more help and I'll have a lot less aniexty over these visits with the specialist. It was nice having a short break and Bella even only just sees one specialist now which is nice to be able to say she has come a long way. Bella used to have Ot Pt and speech on top of seeing a therapist to help her with the adhd and social issues at school. I am glad to say that things are getting better and there is a great plan put into place. Sometimes just knowing the options that are out there plays a big role. Knowing there is options sometimes helps easy aniety like I could continue to have frested about the 2-3 absences a month for Bella and get all worked up in a huff over my own ego or I just take a moment pause reflect on the legal issue at hand which in reality wasn't really an issue. Things are being taken care of and Bella now can be confident attending school with out fear or pressure being placed when she returns to catch up which causes her anxiety and her tummy to get feeling sick which in term causes more missed days of school after she get's sick to her stomach from the stress. now tihngs with her friends have seem to settled down she's moved on to the nicer cooler kinder kids she is doing a lot better being in girls on the run which helps boast her confidence level. I'm so proud of how far she has come. I cam imigine my aniexity as an adult with 22q but Bella being a teenager with 22q amplify that because she also has adhd so somthing on my anxiety level of a 5 could be her anxiety level of a 10 and vise versa. It' not safe to say all of us with 22q have aniexty or skitofrenia. There are just study's that are controled those studies were of people with skitofrenia who had been tested for 22q of course it dosen't take a reocket seicentist to figure out that a common genetic disorer will pop up. If you test people who wear hearing aids or have heart issues or have teeth issues they will also come up with test results in the same way. The Anxiety based awareness prevention based awareness is not key. Knowledge is hope awareness is key. It a lot to say you want to spread awareness but to apply it outside of the 22q community that is something that is hardly ever done unless you are a person who comes into contact with a lot of doctors and become a personal test subect for the medical community to watch and glawk at like Bella annd I have been with out very little credit given for our efforts. I was chatting with a few other adults and this is why we don't speak up often about 22q because the support and awareness isn't out there for digeorge and 22q. end the stigma choose kindness say hi to an adult with 22q we don't bite and you might actually learn something new or I might learn something new and we could help support one another Thanks so much for reading. #motherhood #mommyblogger #momsofinstagram #glassesfashion

#twinning #22q #22qtie #22q11 #22qawareness #22qtiesunite #22qmom #lifestyleblogger #authors #writingcommunity #writinginspiration

#blogger #advocate #motivationalspeakers #motherdaughterlove #motherdaughtergoals #motherdaughter #daughtergoals #motherhoodunplugged

What is 22q in layman's terms?

A friend of mine asked me what is 22q in laymans terms with out the medical mumbo jumbo

I thought I would share a great discription to help everyone else understand because after all that’s what Bella and I have. I also have a father who has 22q, 3 siblings one of whom passed away from it. I have seen the good the bad and the ulgly side of the syndrome. when you get a confirmation and diagonses there are a lot of fears and worries about the unknown.

22q in layman’s terms is a small segment piece of dna that is missing on the q arm band on the 22q chromozone. Much like Down syndrome is an addition chromozone I believe on chromozone 23 correct me if I’m wrong there but 22q is not visable where down syndrome is. 22q is a total total body disorder that affects from head to toes. Your primary doctor will talk with you and might even not be totally understanding of what 22q is. I have run into many ER drs who didn’t know 22q or Digeorge was such a thing. some have heard of Digeorge because it is just briefly touched upon in med school if it is at all.

Genetics specialist is the first kind of you will see they will inform you of the risk if you have a child with 22q there is a 50/50 chance of them passing 22q on to their child. If you have 22q there is the same 50/50 chance of it being passed on. That’s how it occured in our family case.

ALL of us every single last one of us was tested (cost isn’t an issue with genetic testing in Canada where I was born and raised and tested) the doctors here didn’t want to test right at birth for the new born stuff when I had bella at helen devo childrens. I’m glad to have bene able to be one of the few adults they had in the hospital that gave birth to a child with the same genetic disorder. I’m kinda like this freak of nature you can’t stop staring at that is only after I tell you I have 22q. Other wise you would think I was just blessed with a good set of genes that make me appear younger then I am

Digeorge Syndrome is a small piece of dna that effects the total body. There are many other names the doctors who first discovered it had their egos get in the way and the history of people arguing over who knows more still plagues the 22q community as we try to get the same name.. Velocardiofacial syndrome, Digeorge syndrome Digeorge sequence, VCFS, Crainofacial anomally, contourial, cateye syndrome, obz and the list can go on.The main take away is you grasp that it’s on the 22 q arm band a small piece of dna. now some people have it all missing some of fragraments which is another blog posts for another day. I’m just putting what is 22q in layman terms for my readers who asked me to make it simple to understand as I have much more detailed in the what is 22q ? page. infact when you google what is 22q my blog is one of the many that pop up. I’m kinda proud and in aw of that at the same time

This results in develmental issues in the body’s system. Chromozones are our body’s instruction ools and with the small piece of dna missing it’s like our body is a product from Ikea and the last part you need to make it all fit together is missing.

The number one issue is hypocalciuma if your baby is blue chances are it’s 22q. If there are feeing issues chances are it’s 22q if there are heart defects it’s 22q.

All of which Bella and I both have among many others but not all of our issues are a result of 22q you have to play game of genetics 101 and not forget where our roots are from we are products of our parents creation weather we like to think so or not. My fathers and mothers family dna plays a roll in the case of me it was my father that tested positive where my mother did not. A lot of men are the moncho men kind and refuse genetic testes which is why it’s not common for it to come up in familys. There are very few family’s where everyone is tested and only 1 person has it truly only one person has it. My symptoms are so mile dit went unnoticed until I was 23 and getting married it was a last ditch effcort for my family to tell me to get tested as they thought that alone would scare me into not having a family of my own. now for some it does and that’s your personal choice. My self I choose life.

I chose to share my life stories with all of you and my hope is that none of you fear the unknown like I had to face alone.

thanks so much for the support

Mommies Quiet Place Mission statement

In sharing motivation on how to handle life and move forward by learning more about 22q11.2 deletion syndrome though personal experience, knowledge and hope.

22q can be manageable I can help you. I have compassion for others who are struggling while learning about the many health issues that come from having a genetic disorder.

Join me as we learn more about 22q and bring awareness and support to those who have it and have children with it.

The purpose of my website is to educate and advocate to help others outside of the 22q community understand what it is like to live with this syndrome.

Keep on running and don't give up! My passion is to encourage others and parents as I am a trained mentor on the national parent to parent organization.

We need balance in Physical, emotional and spiritual rest welcome to Mommiesquietpace