self-love, self-compassion and saying "no". Setting healthy boundaries.

self-love, self-compassion and saying "no".

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Setting Healthy boundaries


!. Allow yourself some self-love, self compassion and know it’s okay to say no.

Many people think that they don’t deserve to set boundaries. We think we should automatically accept anyone who wants to befriend us on Facebook or go out of our way to help a colleague of a colleague with a recommendation on LinkedIn. Give yourself the permission to set boundaries and say no, I have set up a Facebook fan page for anyone to follow me on there and I can interact with them in my own time on my own terms. A lot of people were upset with me some of the younger adults with 22q took offense when I told them no I don't have time to talk about 22q as a on call therapist for free at any given hour of the day. I have commitments to my family, husband, self care used to take a back burner instead of eating and working out the way I needed to prevent gasteroparies flair ups I would sit for hours sometimes while husband was at work and I had nothing to do other then house work I felt that was my purpose was to be on the other end to help others to know they are not alone. I did mange to set the page up with some ruffled feathers because friends didn't want to take the time to read my blog posts which is just same things I would tell any other person about what's going on if they were to ask. It was easier to ween out who was there for me vers who was there to watch me. I also discovered who to keep on my personal fb page and who get's to hang out on the fan page. If they were on my personal page but didn't go to the fan page I knew then I didn't have their full support and backed off from them. I wanted people around who cheered me on in all I do.

2. Consider your purpose.

what helps when setting boundaries is thinking ahead about how you’d like to use social media. Ask yourself: What purpose does social media serve for me?

Are you using Facebook to keep in touch with friends, to network professionally or both? “What would make you feel safe in terms of how many people you allow [as your friends]? Do you want an open or closed profile? [Are you going to] not put up much personal information and limit access?”

Remember that if you’ve got 800 friends on Facebook — many of whom, it’s safe to say, are acquaintances, at best — all 800 are privy to your personal facts. And that can be risky, So consider what kinds of information you want out there. I learned that the hard way and took a long social media break to work on my own recovery and healing. It's also less stress and less of other people issues that are not mine but now I can say okay call me text me or email me and I can get back to you at such and such time. This in turn allowed me to have more meaningful connections vers the annoying small chat that I can't stand.

3. Set boundaries surrounding time.

Let’s face it: Sites like Facebook can become a black hole, sucking your time into its abyss — if you let them. It’s easy to feel powerless, especially if you’re using social media sites professionally and want to build a supportive circle. This one took the first 3 years of blogging to learn the hard way. I had a wordpress hack and lots all of those followers I didn't get many of them back but they truly didn't support me they were only out for themselves and wanted to have people follow them so they did the I'll do this because I have to beat the numbers game.

I learn that the smaller more engaging audience the more powerful my message got across

The Internet is like a moving target, and with that comes the expectation that we need to respond to people’s comments right away, return email within a day or even hours and stay plugged in so we’re continuously in the know. I felt like there was a target on my back like I was being watched and not very supported it sucked.

But remember that you do have a choice, and “there is no requirement, Rather, figure out what works best for you. Blocking out 15 minutes a day for catching up on comments and your community can still help you make and maintain connections — without feeling stressed and overwhelmed. I now take a half hour in the am before everyone wakes up to posts on social media and by lunch time I return the comments with a more loving positive attitude which reflects and shows

4.Interacting with others

Interacting online can get tricky. tips specifically for interpersonal communication.

Take things slow.

Relationships on the Internet move fast. And we’re not just talking romantic relationships, but interactions of all kinds. When you’re chatting away on your computer in the comfort of home (or the nearest Starbucks), particularly with like-minded people, it feels like you know them intimately. But take your time.

It takes about six to nine months to get to know someone’s character, Since people usually want to present themselves in a positive light — as Chris Rock famously joked, “When you meet someone for the first time, you don’t meet them, you meet their representative” — it takes time to see their true personality. That’s when you see red flags or inconsistencies in their character.

In online interactions, you might get to know the person faster, but either way, “it’s generally better to take it more slowly and approach [your relationships] in a thoughtful and careful way.” Give yourself time to get to know the person before revealing too much about yourself, she added.

Unless of course you decided to join a church and take a 12 step CR class but I'll open up a bit about that story for another time. That might be a posts for offline communication

Do you have any advice for interacting online? I would love to hear your ideas in the comments below




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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What I wish I knew before I found out I had 22q

What I wish I knew before I found out I had 22q

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It been ages since I did a rant blog post!

I call this what I wish I knew about 22q because even after all these year efforts of research is still unknown of how this affects us who have 22q.

 There can be a bit of variability between each of the conditions. Such as 22q11.2 deletion can be a trisomy or there can be chd or no chd. You can have thyroid issues or no thyroid issues. You can have learning speech hearing heart issues or none at all. I wish I knew and understood that no two people with this disorder are affected by it in the exact same way no matter how hard I searched for answers and asked others who have it or have kids with it I always found out there are some similar characteristics but not all of the exact same symptoms and even if we had the same symptoms as someone else there are for different reasons.

I knew what Digeorge syndrome was but I did not understand velocardiofacial syndrome until a few years afterward I did not understand the basics of genetic 101 I can now probably teach a seminar class on it.

I did not know there is an entire country who wants to wipe out rare genetic disorders and completely get rid of anyone who is a big quirky odd or different with how God formed them. I did not understand why parents were shocked when I could raise my own family when I told them. I did not understand the hatred of people who have this disorder but yet claim their love for their own child they too will have a child who grows up one day to be an adult like myself.   I also did not think parents would never want their 30 year old live on their own and be functional adults in the real world I didn't know why parents were so over protective until I had my own child. I will not limit my daughter like some of the parents I know and have ran into but instead, encourage her where she needs encouragement and help her by nurturing her independence no matter how stubborn or strong willed my redhead has become at 10 years old. I am so thankful for her stubbornness because that is what got her through all those years of multiple doctors visits her leg braces and her dental work. That what pushed us past our limited views of others to help us reach our potential we ran a 5k together not many normies can say they did that. 

I understand now the fear is the unknown and the hate is not hated but it is grief it a loss of life they thought they were going to have. I get it I have my own daughter who has it. I too experience all of the awful mixed up emotional feelings that come from having this disorder but I did not allow my self to stay stuck. I educated myself and I am educating others so they know what to expect once knowing what to expect they can be hopeful that is the worst case or they can hope for the best case but either way there is hope after knowing what they are getting into.

Feeling pretty lost scared and confused is a typical day to day functional normal for us none normies who are trying to figure life out. Adjusting to routines and schedules is a challenge trying to manage just a two bedroom apartment can be a chore for someone like myself but here I am doing it basically wiping my own butt. I am shocked that others are shocked that I too can wipe my own butt and look after myself and not only look after myself but after others as well. I am a wife mom and step mom some define what I do a success

I am not impressed one bit by being someone inspiration simply because I am stand to own my own two feet and get up each day and do things that I have to do. I get some people can't I really do get that but to label that all of us with 22q can't do that is unfair and it is already setting more limits on the limits that are already in places. Screw the limits set by others is what I wish I knew!

 

I have anxiety and Adhd and ptsd but most days are good days medications are little because after all these years I have coping skills and things set in place I know that will help. such as sticky notes and how to guides I use a binder system to keep track of everything. I also have a binder for everything I really wish I knew about this binder system that I use. It would have made high school so much easier.

I wish my passing out spells I had in high school were vaggo vessel and that I just had to take this pill for and it would all go away. It does not go away with just a pill I wish it did.

It can be scary to hear your child has a genetic disorder. It can be scarier to know you also have the disorder what is even scarier is knowing you have a disorder and having a child any how because hey life happens and birth control is only 99.9 effective.

I see these worst case scenarios in support groups and such and watch others just stare and hear crickets when I write a post about the good stuff but when I write about the bad everyone comments. I wish I knew I was only a relatable human being by sharing about my stomach filar ups. I would have written a blog post and shared pictures of every time I picked and hugged the toilet bowl I wish I knew you all would cheer me on for that. I wish I knew what I needed to do to be part of a support group to be a team player rather then having to create a blog and website and from my own tribe. I wish there was a tribe for me where I could fit in but it is what it is. I wish I knew life is what it is before life got all messy by my trying to fix it and help others.

I wish I knew how to handle the stress from the nonstop specialist and pt and ot appointments we had to attend and that I had to attend while I was pregnant and after. If I did I would not have ended up in a 72 hour phyc hold with an over dose of Ambien just by mistakenly trying to simply sleep because my brain wouldn't shut down. I wish I knew how to write about that moment to help others to prevent others from going down that path that I did. I wish I knew about 22q.

I wish I knew my brother who passed away from having 22q at 6 years old. I wish I knew what I outlived him. I wish I knew why God takes the little child and not me. I wish I didn't have a second hospital trip for a medication over dose because I didn't know how to process grief I didn't know how to deal with my father who disowned me who has 22q as well. I wish I didn't learn these coping skills from my step mother who enjoys attention seeking behavior choices and takes tynole by the bottles when life gets too shitty for her. I wish I understood mental illness when I was a teen.

I wish I didn't have to have a complete mental break down after I had my daughter when she was 1 and another when she was 2. I wish I knew I had ptsd do to the major abuse and neglect from my parents. I really wish I didn't have to hold all of this in until I was 25 years old. I am 34 years old and I really have only enjoyed living life since that last trip to the mental hospital. I am recovered by the grace of God I understand why God allows bad stuff to happen to good people I didn't know then I wish I knew that too why God allowed 22q. 

I know now I know from the bible study's from the medication from the teachings from all the years of hard work in therapy. I wish I could pass all of this knowledge on to others so hey don't have to feel so crappy about having 22q or living with someone who has 22q but what I know is people are going to do think act and feel how they want and there is nothing I can do to change that. I also wish I knew I would make and lose friends who have 222q based of what others perceived about me. I wish I knew all of this about 22q

I wish I didn't see this from a parents perspective and also somebody that suffers from it. I wish I knew all of this about 22q.

I wish I knew that insurance did not cover anything related to my daughters health condition and that having children's special health was useless because Medicaid will cover generics of what she needs.  I wish ssi knew what 22q digeorge syndrome was and that it not going to get healed because she can speak. I wish I didn't have to appeal ssi or have to deal with ssi every time we tuned around but only one of us can work because I have no ablity to stay at a full tme job with the ups and downs of my own illness. I wish I knew there was more support.

I wish I knew all of this about 22q.

What do you wish you knew about 22q ?

 

 

 

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The need for Self-Discipline

Hello everyone, it is nice to see all of you!

Have you ever felt like you were on the outside looking in?

My name is Amanda Ripsam I am 34 years old and look younger than I appear.

I am often told I look no older than 15 and too young looking to have children at the age the kids are. I live in Otsego, Michigan.  I have 4 kids, three out High School and a 10-year-old daughter named Bella. I share mine and my daughter‘s adventures living with 22q on my site mommiesquietplace.com.

I was originally born and raised in Toronto, Ontario, Canada.

I have a unique perspective living with 22q11.2 deletion syndrome as it also affects my daughter, 3 of siblings and my father. There are over 180 conditions that can appear in a person who has 22q from heart issues to learning delays and all in-between. There is no cure and it is a managed condition. I was diagnosed with 22q when I was 21 years old.

Today I am 34 and I am a parent mentor and special needs advocate and have my own website that I use to help walk others so they are not feeling alone and isolated like I was feeling. I formed my own tribe. When I couldn’t fit in with anyone else tribe!

Living life with a rare genetic disorder is like running a 5k race! Recently I shared on social media that Bella my 10-year-old with 22q and cerebral palsy and myself ran into the girls on the run 5k race in Kalamazoo, Michigan, I posted at check in points on my website as my daughter left me in the dust running as hard and as fast as she can with her coaches.

With 22q there are no coaches!

My goal for my ministry is coaching others through life with special needs children who face challenges like 22q.  My passion is mentoring other people so they don’t have to walk an unknown medical mystery journey without a coach cheering them on!

My training for 22q was my own journey and watching my siblings endure life with 22q and my 6-year-old brother passing away from complications of this disorder. I was well informed and trained before I had my own child.

Climbing the hills of the battle against 22q and beating this illness one symptom at a time often makes life feel as though you have been clawing your way running up that steep hill at the 2-mile marker during a 5k race. I am sharing about our race because even with Bella having a secondary disorder called cerebral palsy I am enduring and persevering through our struggles with this disorder while overcoming other challenges our family faces day to day.  I can describe that our adventures are like the feeling it feels after the 2nd mile in the race and you just have to keep on going no matter how exhausted and jelly like your legs feel. 

To get to the 5k finish line you have to push through being worn down. 22q can make you feel worn out and burned out. Learning about any medical condition can and will take it toll on a person physically mentally and spiritually.  I share on my website how I try to balance life one step at a time.

Life with 22q is just like the 5k race.   Just when you think you’re almost there at the second mile you look up and see you are not done yet, but you look down and see how far you have come!

  This passage has been a source of strength and has helped get through this journey.

1 Corinthians 9:24New International Version (NIV)

The Need for Self-Discipline

This is the verse that has helped me keep on pressing on

24 Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize.



 

August is Gastroparesis Awareness Month

Gastroparesis Awareness Month is August and the reason I am writing about it is because I was diagnosed 4 years ago with this disorder. I have Gasteroparesis on top of 22q11.2 deletion syndrome.

 

 

I am medication free for 3 weeks now a new depression pill that is out on the market that is suppose to help with the vagus nerve damage that I have on top of having 22q11.2 deletion syndrome a deletion on the 22q chromozone I have this other disorder that is more pressing that I face challenges daily what to eat and how to eat consume me.

  I did it all diet and lifestyle change. My conclusion after the experiments and treatment from bravo capsule is where you swollow this maganitic pill that goes into your gut and it transmits to a recording divice and you wear it for a week then give it back to the doctors to tell how high level your acid levels are in your system my levels were very high, then they gave me a radioactive egg test where they take a picture of your insides with an xray at every hour for 3 hours in a hospital. I did a swollow study and a endoscope. I had bioposys done and poylups removed and brunt off. I had been told I'm not a candidate for surgery because of the hospital I go to is does not have a throatatic surgeon so I was told loose weight and sent to a nutritiosit who told me to eat smaller frequent meals that has small amounts of protines. Eat soft bland mushy foods like eggs, fruit and oatmeal and broth. I'm so tired of having to eat the same things all the time. I am tired of trying to loose weight and the more I try the more I gain. I then attempted the dreaded gluten free diet and dairy free diet
I am now almost all gluten free except for when I go out I have no will power when I am out of the house my mind and gut think freedom. This elimination diet the process of testings I had to endure it all sucks by the way. I was even bed ridden for the first part of the diagonses becasue I was not eating enough calories I couldn't make it past 900 calories I had to learn tricks and tips on how to sneak in healthy calories that were not carbs cause lets face it all that is soft bland and mushy is complex carbs. I had to blend my food and slurp soups. I had to miss out on church potluck days because I lacked the will power. I had the supportive friends but I didn't want to burden them with my struggles. I also have my daughter to deal with and my marriage trying to feel sexy is out of the question when your fighting with your butt and gut issues.  It took all of my will power just to get to where I could start walking again there were days my depression was so beyond what I could express into words that I thought what if I just chocked in my sleep one last time. Chocking in my sleep is also a symptom of this disorder.  Lack of sound restless sleep is another. I kept all of this to myself about how this effected my self esteem and I started to withdrawl into myself and retreat into my own world. Only having enough energy to face my family and most days I had to fake a smile for them and pretend I wasn't in real pain under my rib cage from vomiting the night before. I went and attened school and church functions like a champ. My friends stop calling because I stopped calling what am I going to talk to my friends about hey how are you your job going? I don't work I can not relate to anyone else I had a new hobby getting my life back on track in health and wellness mind body and spirit as all were crushed along with my hopes and dreams of the future.

Then I started think about my daughter and how would I advocate for her but not for myself why would I fight to keep her health up as well as I do if I didn't take care of myself. My husband helps so much but I had to do and deal with my own issues with this disorder. Both disorders I have 22q11.2 deletion syndrome and Gastroparesis

I am slowly healing from Gastroparesisit will never go away and could get worst before I get better and it is a cycle.
The flair ups and they have been less and less as I learn new ways to eat and balance life.
I even started seeing a new dr locally for myself vs traveling further out.
I am feeling much better and now I am working on sleep and routines.

Now 4 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 dramma that stuff and pull you in and suck you dry. The competitive I know more then you is strong in groups and they tend not to be about supporting which is why I started my blog to avoid the dramma and focus on finding others who are going though the same things. I think I am only in three groups now.
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. I am considering putting together a website vs blog. Youtube channel in the future as that's how media trends seem to go.
Remember its okay for self care so you can be the best you for your kids and family. .
That is my tip for the week.
What are some of your favorite self care tips? Thank you everyone for reading