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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How to self care as a special needs caregiver

 As a caregiver, we can often overlook the burn out factor.
 I became burnt out friends! That is why there have been very few blog posts. I shared a bit about being burnt out before and last week I wrote a post about attending a conference that helped speakers and writers which I found a new source of inspiration.

This blog is about balance and I have not shared about how I balance and manage to live with 22q11.2 deletion syndrome. It requires a lot of time management in all areas of life, physical, emotional and spiritual. I went to the speaker's conference as I mentioned above and I came back home to the reality of trying to keep up with my two bedroom apartment and kids sometimes I only have free time to sit with my husband and fall a sleep on the couch.

I have a bit on my own plate to manage my own health issues I have gastroparesis and it is gastroparesis awareness month so I felt I needed to write about the struggles I have. 

I have adhd and ptsd I have not talked about my struggles with these things and how I am managing those symptoms or even managing. It is because I am busy managing these issues all at once and on hyper alert and on top of most of it. I say most of it the one issue I had with writing my blog posts lately is because of some of the sweet honest feedback and comments friends have given to me after I was on a few podcast I been doing a few different podcast shows because it is easier for the nerve damage for me to speak than it is to type out an entire blog post. I can transcribe podcast post later after my nerve damage heals but many of you have asked where I have been. What has Bella and our family been up to this summer and where are your rambling updates filled with tired typo. That is because I am stepping up my blog and I am starting to work on book writing perhaps in the future you will see pdf files for sale on my website for right now I sit and type behind my computer screen when I get the change to breath or when I get the chance to get away and type it is almost never this summer has gone by so fast and I have been living in the moments and enjoying each day as if it was my last. Life truly is short. I lost my brother when he was 6 years old and he had 22q the fact that Bella and I both have 22q and are doing as well as we are is a huge blessing and I will not take that for granted. Now there are some people who are envious of how well we are doing or think I have it all and I am accomplished I am not accomplished at all to be honest I’m just a simple mom trying to find her quiet place manage the kids and husband and my own struggles with my health issues as well as Bellas health issues. I worked my butt off when Bella was young I cut off a lot of unhealthy social stress from online support groups where some only wanted to bash each other and compete over who knows the most about 22q I’m not about to play that game to say I know more or less than any other person out there. I know how 22q affects me as no two people with this disorder are alike. That includes my father, half-sister, half-brother and the half-brother who passed away we are all dealing with the 22q11.2 deletion in our own ways none of us hear voices in our heads and none of us have thyroid issues.  As they are common on the list of issues that could go wrong like heart issues we do not have any of these major factors to deal with. Other than mild heart murmurs hypercalcemia my gasteroparies and bellas mild cerebral palsy both mine and Bella’s heart are doing okay.

I am not going to justify and list all of the issues we have or don’t have but the one common issue we face is hypercalcemia including Bella. Bella and my levels of all three calcium levels have stabilized our iron levels were low to all of us one that was balance things got easier. Sure we deal with things like Adhd and I struggle with time management. Honestly every mom I mentor with a 22q child or not struggles with how to best manage their time it not like there is a crash course in time management 101. There might be I might make a book about it but some other Billy bob out there might take my idea and make it their own before I get around to pulling it off.

I received all of your encouraging words and emails, as I reply to each one slowly I am coming up with blog posts ideas. I love the one question I get from all the parents I mentor is how do I do it all. I simply don’t if it is something that God brings me to he will get me through it. My faith is my strength and that might not work for some of you but there has to be something higher power other than myself I sure couldn’t do this all on my own according to some people they are shocked I can tie my own shoes let alone speak up and out and advocate as well as I do.


 I am now almost all gluten free elimination diets sucks by the way.
 I find I have more issues with milk vs gluten and lactose-free seems to help me with fewer tummy pains. Still eating soft mushy foods but allowing myself a cheat day here and there. I also enjoy going out now I enjoy friends and time with them and I embrace life. I even did a 5k race this past May with Bella and I am training to do another 5k.

I am slowly healing from gastroparesis it will never go away and could get worst before I get better.
 The flair ups and they have been less and less as I learn new ways to eat and balance life. Stress is a huge trigger. I once had a panic attack so bad that my resting heart rate was at 120. I started medication for that simply because I need to find time to reset and balance my physical and emotional as the two are so inter connected. I didn’t realize that having a panic attack could affect your heart as well. I mean I figured I would have to be 50 or 60 before that kind of stuff affected me.

I am 34 and I have to slow down and eliminate the negative social pressure of the crap that people want to fling online even if it something as simple as a good old political debate on Facebook. I avoid it all. I do this because I need to keep myself healthy distant myself from love one's friends or family members I have no issues walking away from if it becomes stressful for me it not a reflection on who they are as a person it just a reflection on my own personal boundaries what I will and will not tolerate.  As I adjust to this new me my family is also and we talk it all out in the open at family meetings. We have routine charts and rules listed on the wall with natural consequences because sometimes it all to much to keep in my head and in the heat of the moment we can forget about coping skills. I even have a list of things to do when angry or bored on the wall by our routine and chore charts. My apartment is decorated with family pictures as well everyone has a role in the family and all have value and worth in my home.
 I even started seeing a new dr locally for myself vs traveling further out. Sometimes just a few small changes add up over time and looking back a year ago I am not who I was and I see huge growth like I mention in that conference post I grew as a person in two years in my speaking journey but I also grew in two years over my own personal journey and finding balance. I even had a fun girls night out last night while Adam watched the kids and my friends' kids. Adam a trooper. I give props to all of the single parents who are out there dealing with this syndrome on your own with your children who have 22q I don’t know how you all do it.  I only know what works for myself.
 I am feeling much better and now I am working on sleep and routines.
 Sleep has always been a struggle as many of you 22q mommas can relate to.
 When Bella was first born and going through diagnosed stage I didn’t get any more than maybe 2 hours of sleep a night.


 So doing managed care for myself and she became too much and I had let my health slide.
 Now 10 years later I am finally back on track I have been on track before but this is a new back on track for me as I am doing everything holistically and naturally. Educate yourself is the key to hope. Question everything and avoid online group drama that stuff and pull you in and suck you dry. The competitive I know more than you are strong in groups and they tend not to be about supporting sad to say not all of these groups are bad and most have good intention but there are 22q haters out there and haters will hate and that’s okay. I’m not going to go out of my way to change anyone else’s mind. I’m just simply sharing what works for me. I ignore the stigma and if I don’t let it be there for me my daughter isn’t going to pick up on it from others either and if they aim it towards her then they are not worth the effort or energy for us to focus no one can say we are normal or close to normal as no one sees all that I struggle and deal with or what Bella struggles and deal with. Why would I want to be remind of the sad angry moments when I can share the positive side and the down low sides but I have ups and downs of this journey and just when you think you have it handled bam something else new comes up on the diagnose journey and we have to learn new ways of management. This disorder is a managed disorder there is no cure and we are all fighting our own journey why make it all the time soap drama when we can go out there and make a beautiful world and help encourage one another.

Encouraging others and mentoring others is why I started my blog to avoid the drama and focus on finding others who are going through the same things.  Who are not wanting to be Debbie downers but want to figure out healthy ways for positive change from a negative stressful often times emotionally unstable process of healing and living with 22q211.2 deletion

I think I am only in three groups now. I was recently asked to help monitor one and I am honored to do so as the few groups I am in are really on the ball and yes allow venting but not whining there is a difference.
 The blog has been around for 4 years and going strong at over 4,000 subscribers even with the changes I have had to make with web hosting. Do you remember me considering putting together a website vs blog this is that website I told you all about!

I am also working on a YouTube channel in the future as that’s how media trends seem to go.   Remember it’s okay for self-care so you can be the best you for your kids and family. I am so glad I was tested and treated for 22q issues. Some others hate the fact they were tested because there is no one who knows how to treat because most doctors don’t have a clue what it is still even after all these awareness efforts that are why I share outside of the 22q community an old fashion grass roots system of just sharing about our journey and if it brings awareness that is a nice added bonus. So distance yourself from the negative people who want to hate on you or bring you down and focus on the positive friends you do have and there will be room to make for new connections that will be of support both ways it a give and take that is how you know it is a healthy kind of support system.
 That is my tip for the week.
 What are some of your favorite self-care tips?

Until next time take care and have some fun when you can

Love

Amanda Ripsam

 

My 10 year old is chasing down 22q and cerebral palsy running a 5k here is what I learned.

Hello everyone,

 Over the past 10 years, Bella has taught me so much about the world, life and even about myself through her eyes.  

 Bella turned 10 this year, in fact, she just had her double-digit birthday April 27 and that is a huge milestone to achieve in any kid’s life.

As you know Bella is in Girlsontherun a program right here in Sw Michigan in Kalamazoo

Bella was lucky to be able to participate she loves the top, water bottle and the shoes they give as part of the deal when you sign up. There is cost but they have scholarships as well.  I encourage Bella to sign up for things she is interested in to help develop her social skills one of the issues she has with having 22q deletion syndrome.

Most 10-year-old kids are reaching goals and milestones and developing their skills in things they like and dislike such as hobbies, self-expression through fashion and developing a self of self-worth and self-esteem. Bella most favorite past time is starting to strive for independence and driving her mom that's me crazy! while she is starting to enter puberty and learn how to cope and handle living with two different disorders she seems to think she the boss because it is the one thing she can control in a world she has to deal with so much she can not control.

One major issue we deal with daily is 22q11.2 deletion syndrome which I also have and I can have inside first-hand experience to pass on to my daughter. The other disorder Bella has is a mild form of cerebral palsy which I am just learning what it " looks like" I have friends who have children with cerebral palsy but they use a cane or a wheelchair I only know one other person who has a teenage daughter who has mild cp and she does not look like there is anything different just like Bella looks like there is nothing different about her.  I am learning all I can about cerebral palsy with the help of doctors but mostly from people we met. I know our challenge is we are learning how to deal with peers her age who pick up on there is something different about Bella but they can't figure out what usually the sweet ones ask me about Bella and are patient with her and want to be her friend and include her which makes me so grateful that Bella has a small group of friends. Bella struggles with the day to day task of staying focused due to ADHD and issues with things such as homework has been much easier to handle. We do face challenges together hand in hand or side by side I may not always blog or post about every single piece we deal with because this is our journey and have learned that not everyone wants to read about the sad stuff all the time. That's why I am writing about our joys more often than our sorrows because I want to remember the good stuff. I do journal the hard stuff but we have had easier days over the years with fewer doctors visits now that Bella is older we don't see doctors as often as we used to for her. This past year Bella has grown so much we have both been on the verge of tears out of joy, fear and yes even anger with one another as we challenge each other to do our best to overcome our own struggles.

 I can’t say that I don’t pity my poor husband as we discover this journey together and he left scratching his head most days trying to find his footing in our girly midst of sometimes it seems daily power struggles of trying to tell Bella I’m not her friend I’m her parent. Oh, the joys of pre-puberty and now entering puberty at a speeding rate I can’t seem to keep up with the daily challenges all on my own.   I seek help and ask my husband to step in but not sure where we find time after for one another as we struggle to connect from an exhausting day of trying too hard to be the best parents we can be.  If you saw my Facebook post you would see that he starts a new full-time job in Grand Rapids, Mi.  Which means less time for romantic dates and more time for the have to and the daily routines of the day in and day out the lifestyle of parenting.

In the mix of all that goes on around here, Bella needed an outlet a place where she could run and burn off her pint up energy and she found it in girls on the run a program for girls who train together to run a 5k. You read that correctly Bella is training to run a 5k if you are on any social media accounts I have you would have seen the weekly status updates of how many laps Bella did today while this week we are nearing the end we did the first practice 5k. Bella is a fast runner and kept up with the older girls while I lagged behind and helped the kids cross the street I had an idea to write this blog post because I wanted to share a part of our journey and the amazing thing my daughter is doing at 10-year-old with all she has overcome and has to manage she has shown me yet again that there is nothing we can’t achieve. I haven’t run in years but I did attempt to I made it down one street and was huffing and puffing and realizing how out of shape I truly am but she is inspiring me to get healthier.  As Bella grows learns and develops into the wonderful women she is becoming I am seeing challenges we face in a different light.

The one thing I signed Bella up for to help with some of this is girls on the run the doctors suggested to keep Bella's legs stretched out is to have her stay active be it by riding her bike or with the use of running or jogging. Bella has ADHD as another hurdle she manages and all that energy she has no idea what to do with is different it is the focus and centered when she is running. When Bella runs, she says she feels light and free like there isn’t anything she cannot achieve.  When she runs the fears, I have for the future slip away and all the doctors’ visits, sleepless nights and struggles we have overcome are all worth it.
Sometimes It does get Better after all.  

many people don’t know what someone with “mild” cerebral palsy looks like. What do they look like? If it weren’t for medical devices, would anyone be able to tell?

 Did you know cerebral palsy is the most common motor disability in children? It affects approximately three live births out of every 1,000 in the United States. Bella also having a rare genetic that is not as common as cp a different disorder called 22q11.2 deletion syndrome is another disorder on top of cp that seems to amplify the mild form of spastic cerebral palsy that Bella has.  Both are total body disorders to learn more about 22q please check out the what is 22q on my website.
Do you have a person who inspires you in your life to keep pressing on when times are hard? I sure do that’s Bella

If you want to see video of Bella running click on the youtube video and don't forget to subscribe to this website (purple subscribe button on top right page) and you can also subscribe to our youtube channel. Bella plans on making more videos and wants me to record her running in her 5k race.

 

 
Will you be there to help cheer Bella on ? Let me know in the comments below.

 

Thanks for reading if you like this post please subscribe

Will you be there to help cheer Bella on ? Let me know in the comments below.

Will you be there to help cheer Bella on ? Let me know in the comments below.

 Bella

Bella has 22q11.2 deletion syndrome and mild form of cerebral palsy and a few other symptoms that combine with 22q .

for more info on what is mild cerebral palsy please visit. http://yourcpf.org/ 

for more information on 22q11.2 deletion please visit http://www.22q.org/

Thank you for reading and helping spread awareness about these two disorders.

If you would like more info just leave a message in on the contact me page.