Fear no more anxiety and I

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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

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Self care after caregiving.

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Today was another dr visit for myself. Us moms gotta take care of us too. I went for a mental health eval and medical eval. No I'm not in crisis infact what ever the word for not in crisis is I am in treatment to actually get treatment not just banaid this and that and to finally get the adhd and sleep issues under control. Ptsd depression and panic is always going to be apart of who I am. Medication or not, treatment or not. It has been over 10 years since I have been in crisis and I am very proud of that. I am thankful at how far our family has come along. I am finally at the stage where I can begin driving. I panic as a passanger, I get distracted easily sometimes and my directional skills lack such as westnage and west main look simular I know they are not but that's how my mind get's scattered. little projects around my home I will start and stop and I have a billion other things always on the go. That's one of the reasons I haven't blog so much I have been focused on myself. I used to be there all the time for others and that I am to a point still. However as I have aged up with living with 22q I have to look at I'm not going to be around as long as the average joe and if I don't tackle these things while I'm young enough and able bodied enough it will get worst then I will be in crisis mode. Preventitive health care is a huge thing for me and my family. Bella being stable and doing so well has been my number one goal now she is out of that risk stage I can focus on myself my health my personal life goals. Work, drive and friends with real people out in the world not just online. I post and share this in hopes it encourages other moms or parents to take a look at their own heath needs mental physical and spiritual health needs as that all needs to be in balance if it's not we can take on other peoples problems get sucked into others unnessary drama and start to spiral backwords. I had a gyno appts and have come to the soultion that it's time for me to get my tubes removed.

I love my Bella she is amazing but I have to look at the facts. I am 35 with a genetic disorder and a ton of health issues associated with having gsteroparies and my pregancy was not an easy one. Is an understatement I had all kinds of high risk complications due to my own health issues and such I had been inpaitent at a few mental hospitals after Bella was born. It took 3 attempts to really get the help and treatment. I went though Dbt, cbt and all kinds of expsoure theraphy for the abuse I endured. As a new mom I was sleep deprived and fearful my child would pass away in her sleep like my 6 year old brother had. Sometimes I get a little panic when Bella gets seizures but she hasn’t had any in years thankfully. The passing out spells are gone I used to get such bad panic attacks I from the ptsd flashbacks my world would crumble and I used to self distruct. I have been better for 10 plus years now. I am so thankful to all of those who have helped me and tought me self confidence, self control and healthy boundaries. with out any of that I wouldn’t have the skill set I do to help mentor other parents I would not be here even.

looking back at how far we have come I have come and grown as I have aged has helped me realize that I was given this mountian to show others how it can be moved. I often meet others who are going though simular things I have in the past and I’m now able to say yes I have been there got the Tee shirt this is how I managed to get things better. I was never really able to express into words how that journey looked for me. I wasn’t sure I wanted it out in the world that I had over dosed on medications and that’s how I got the help I didn’t want the first time or the second it took the third time of treatment for me to really get it. that was over 10 years ago. I was ashamed of my past but being in a recovery at church has open my eyes the 12 step program has helped me realize that no I don’t do drugs, drink or smoke or anything else but food comfort and social media was there to fill a void that void was I felt indeaquate never felt like I belong or good enough for anyone. Friends come and go and been shady or flaky at most I would get used easily by friends and then dropped as soon as they got what they wanted form me being resouces or a connection I have had in the 22q world or writing world. I was seen as not strong enough to stand up to any of these people who used to try and tell me how to live my life. My logic now is if they don’t pay my bills there voices don’t matter. It’s taken a ton of work to get to where I am and this treatment is finally the last steps towards freedom I have been craving. Learning to drive now that my passing out spells are gone, discovering how am I going to start working full time once I’m finished with treatments and surgery for tubal removals. How to cope with others who feel they have to assume and say this that or the other thing behind my back with out coming to me first directly from the source. Attending my weight loss group and working on that has also helped.

That’s all I have been doing working out, writing my food down, so now I have the time with Bella in school to write and blog but thankfully there isn’t much to blog about with aspects of 22q life except to update everyone on this moms going to take care of her self for once with my husband by my side of course but I have been taking care of everyone for 10 years. Now it’s my turn.

I want to loose wight for health reasons as well and have been working hard with my husband together and doing so. I'm in complete recovery and able to fully enjoy all life has to offer. I look forward to sharing my personal journey and meeting others who have simular issues who are experiencing some stages in life like I am. I'm almost an empty nester now that the older 3 step kids are young adults. Bella is 11 and will be entering middle school soon. I have no more excuses not to take care of my own health even insurance isn't an issue any longer. My appts so far has been one with the gyno to talk about the tubal removal and I was approved so that will happen soon.

The other is with the mental health I have kept stable but I want to drive and be able to handle working a full time job. There is a lot of life changes happening and sometimes no any time it's okay to talk and get the treatment with out having to be in crisis. I'm so proud of how far we have come.

I look forward to growth in not only my website and with all of you but in every aspect of my life.

I hope you will still follow along now that I wont be only blogging just about Bella my wonderful 22qtie. I will also be writing about what it's like as a parent to a child with a genetic disorder of it's good bad and messy ways it effected our life.

I will still be working on editing and publishing my own book I have added to it. I am trying to decided if I want to self publish or traditionally publish. Or if I just want to upload it to my website and sell it as it is.

Thank you everyone the past 10 years has been a learning experience both good and bad and I wouldn't trade any of it. Thanks for those who have stuck around and supported us and our journey and still do.

22q and mental health

Hello friends,

Mental health has a part in our story a major part in my own childhood. Bella my own child struggles with her challenges from Adhd to anxiety issues. Bella at a young age sees a psychologist every Tuesday. That is taboo talk with friends and to some extent even family members do not truly understand what it is that Bella experiences having a genetic disorder isn't just something we can't see feel or touch. It is an emotional tool that she carries on her back like a backpack. Weight on her shoulders which when stressed she feels that weight. My husband and I have our own shares of issues when it comes to mental health challenges from our own past. coping skills and pills is what we use to help us cope. A medicated family is a happy family I joke often.  There is a strong stigma among others who will look at Bella and she appears physically and most days mentally just like the rest of the other kids in her class. Sure she has her quirks but what kid dosen't?

Bella knows the word coping skills and uses some great tricks and tips she has learned attending sessions with her current psychologist and her past psychologist we had to switch a few from moving to insurance issues to one was just not a good fit for Bella. I think finding the right combo of skills and pills has been what has helped Bella become so successful being mainstream with an Iep for example the one issue Bella struggles with is focus and inattention on top of at the end of the week the kids are just to excited and too loud for her. It's nothing that the kids are doing any different from any other day of the week Bella just becomes overwhelmed with sensory input and seeks to retreat. Bella even has panic attacks over new things but different things like bathroom's and get's frustrated that she can't simply do things like other kids her age. So often she is told from school and professionals what she can't do we do not get to work on the skills of what she can do. That's where we provide positive reinforcement we use ticket time as a reward system and it's been a learning experience for all of us as well as it's been fun to point out the fun things she doing correctly and the rewards she earns just for doing things that kids her age should be doing.  I am in aw that my relationship with my daughter is light and fun most days we do have our moments but nothing like when I was growing up.  When I feel overwhelmed I cry in the closet and my husband brings me a glass of wine. I have never gone to the extreems my parents have from neglect to abuse is what I endured. I am so thankful. I was able to heal and focus on me all of these years. My own personal growth has helped me become a better person and parent.

Let's be real it could be a lot worst it can always be worst. That's my motto. That's what I endured was wrost. nothing is as bad as when I was growing up I am so frustrated that parents have this stigma of let's not talk about any mental health issues we don't want to label our child we want perfect normal healthy kids. We want to push them to excel in sports, plays and beyond what they are able to keep them focused on the good stuff. Sometimes being to distracted form the mental health issues and avoiding them all together makes the issues worst. Like a ticking time bomb.

Now let's go back 30 something years ago when I was younger perhaps even her age. What was I like? did I too struggle and was just to afraid to make a peep out of fear of what would happen to me if I had? If I dared tanturmed over not getting what I wanted in a grocery store I was publicly embarrassed and yelled at.

Back when I was younger I was not given any of these options or coping skills. When I was younger children were seen and not heard. When I was younger I was abused and tortured for the same issues Bella struggles with and I suffer from ptsd night mares and flashbacks. There was one night we were out my husband and I with Bella and Bella had a meltdown in the grocery store not knowing then it was sensory issues but I had to step back and ask my husband to just handle the rest of the shopping I became panic and overwhelmed myself not really realizing why until I got to the car and had a moment and breakdown of a flood of tears.  That's when I wanted to share my big secret with the world I wanted to tell my story.

 when I was 30 I wrote a story called one family copes with 22q and I got such good feedback infact so many others were insprired to blog and write too that I am creating a how I healed story yes there is hope in my story no not perfectly recovered but those panic attacks in the parking lots have dimished and I faced my own demons in my own theraphy treament. I even forgave my parents not for them but for myself. I forgave God and my own spirtual journey is what has helped me do the rest of the healing. To fully heal you need a balance of spirit, mind and body and that's what my next book I am working on is all about. It has taken time. A lot of my friends keep asking me when am I going to publish it. To be honest I do not even know if I want to publish my book. It will be a two part series filled with ups and downs. until then I will blog and focus on my other hobbies. I write and edit when I can and I have my friends who are authors, speaks, and agents who all say let me know. While here I am letting you know I am almost finished. phew and on all days National children's mental health day.  One thing I have learn is writing is harder then I ever thought. Writing a book is an exhausting struggle but one I am enjoying the learning process and the friends I have met along the way. I want to tank all of my friends who inspire me by all of their stories and ideas who have helped me grow. I appreciate everyone's support on our journey. Writing has been a mental process as well as physical process it has taken all of my time and effort and personal experiences. Writing a book is way different then just brain dumping on a blog. Writing a book requires editing and revising a lot of revising. I found my focus and I am ready to start the publishing processing soon. I am so excited. I would love to have my book published within the next year.

Thank you everyone for helping me prove that there are no limits to how far those of us who have 22q can go.

Why does Bella needs all of her appointments every single Tuesday?

Update: it has been ages since I did a life update

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Tuesday are our days we take Bella to physical therapy and psychology.  We sometimes also see other specialist on the same day. Last month we ordered Bella's shoe inserts they are called chipmunks they are a plastic insert we put into her shoes and she wears them all the time. This is part of the treatment for Bella's leg pains that come from having a mild form of Cerebral Palsy. cp for short. Bella has digeorge 22q11.2 deletion syndrome and this is just one of the many ways we keep her as active and healthy as she appears.  Spring break we will pick up Bell's shoe inserts and she is excited about them for now. They stay in her shoes like dr scholls inserts. Her shoes have high arch and are new balance with insert put in. Bella loves running and is excited girls on the run has started up again. 22 laps around the gym every Monday and Wednesday. 

we had Bella's occupational therapy assessment and we have great news.... Bella does not need occupational therapy.  The other stuff will come once we are better able to handle her adhd both emotional and physical adhd and panic attacks a lot better. Bella does get tired more and she is on a mussel relaxer for the leg spasms at night.  We are to continue with physical therapy as that seems to be helping Bella so much with her leg pains from the mild cerebral palsy spasms.

For the psychology part of her appointments seems our girl is having panic attacks the joys of entering puberty and works herself up into a temp of 99.9. right down to tummy feeling sick and while everything her mamma has syncope.

  Seems on Fridays the school calls us and Bella has migraines and no one can tell what is causing them. Bella says the loud kids and sounds in her class but they are no different any other time of the week. I think it is something else all together. We will get down to it and figure it out even if I have to order a smiley face button spy cam to get to whats distressing her. 

Bella needs more self esteem building because she has been told how much she can not achieve at school vs what she can achieve at school. There is also a tight group of girls that Bella is not apart of. She is friends with two other kids who refuse to take part in the clicks which I am so proud of her for standing up for herself. There was a few things that come up where she was picked on by some other kids who claim they were just playing a little game with her but that worked it self out. Bella also does not like how loud the bus becomes. Kids in her classroom seem to be a little to loud for her to handle. We also have some issues where we have taken her to busy restaurant or concerts and the loud sounds bother her there too.

 

Other then the typical day to day stuff of routines and normal structure there has not been much to blog about in terms of updating friends. I did get a new couch and a dslr cannon camera that I am loving. I will have a gallery of my photos soon for all of you to check out

Thank you to everyone who has asked how Bella has been doing and wondering where my updates have gone. Over time Bella updates have been less and less and we are moving forward in the right directions in all areas of Bella's life creating that balance I have longed for since she was little.

oh and we are also getting a dog :) I will share photos of our new friend once we get him home. he is a rescue dog from the animal shelter. I can not wait to share him with all of you and introduce you to our new pet. The godlfish are still alive and going strong. I never realized how long gold fish live when you actually take care of them. The goldfish have been with us for the past 3 years.