I'm sick of being a freak!

I am not always your ray of hope! I'm sick of being a freak, that is the disabled lady with abilities. Just screw the whole "dis" thing.  

Me.JPG

The past 48 hours have been hell. I am not going to sugar coat how awful living with this disorder can be it was a tough one to keep positive while waking up choking in my sleep on stomach contents. 

It was tough when my husband didn't understand what to do and watching him feel helpless and lost and not know what to do to help me while I felt equally lost and helpless. It was tough that this time my 10-year-old brought my puck bucket to me instead of me bringing her one.

The caregiver turned into the patient. This is not the first time either. On my older blog, I shared about my diagnoses the ups and downs. It has been 4 years since I had been in this kind of pain. I have had dry heaves, I have sleepless nights and always there stomach pain the doctors can't get rid of.   The pains from gasteroparies, not pains like when you're constipated it is painful pains like when you have the stomach flu and your period at the same time. What made this time so much worst was this time I had my periods during this ordeal.

I had stomach spiraling craps, I had dry heaves I had poops as large as my gut tearing out of my insides. I wanted to give up at one point I even asked Adam to help me end things said I was done. I was done with treatment I was done being an everyone ray of hope because I can wipe my own butt. I was done with everyone expectations of me being healthy because on the outside I look fine and so does Bella. Bella has cp I am done spewing the same public info and I am done with being anything to anyone else at that moment I was done mostly with being a woman who has periods. Not eating can take it toll on your emotions I was on 48 hour liquid diet at this point and I was hungry and scared. I get scared and angry just like someone of you who look up to me. I don't have ray of hopes when I puke for days.

  Sometimes my website might be a cheerleader saying you can do it but I need to have a cheer leader safe place to share with my friends that hey I had a major flair up tonight because I do not have the energy to tell my story 100 times to 100 different people. It is easier to just post it here and if people want to hear from me then they know where to find me.  I have not written much lately because I didn't know what to write about. I was suggested by Adam that maybe I should write about this. So why not. Here is fact and reality. Now I don't live like this daily in fact this past May we ran a 5k but today is not that day. Today I couldn't get out of Bed much while Adam had to help out. These days are not so close together anymore and I can manage most days with this stomach disorder.

Living with my stomach after gastroparesis is not easy and I'm not healthy as you like to think I just don't have time to sit and tell everyone my poor me stories because I am too busy trying to get back on track on routine after a flair up on par with my family again after an adjustment of another new treatment plan. For me taking care of myself is my biggest hurdle self-care is not something I like to do. I know how to care for others I don't know what to do when it comes to caring for myself really neither do most doctors because they have not heard of this disorder or the chromosomal disorder I have. 

I just make just when you think you managed it and got it under control Bam it bites you in the butt. I wake up choking in my sleep throwing up on the foods I eat. I have to rest and take care of myself. I don't do this well. I had a moment of being lost and hopeless feeling frustrated and scared. I too have my weak points I just don't usually share it all because people gossip and form their thoughts on what they hear from others.  Yet when I post my post I hear crickets Truth life is a rollercoaster!

Adam my husband is quietly there by my side helped get me a bath and helps send Bella into my room with a puke bucket I am 34 years old and had to have someone help me!

It not easy every day. I enjoy the easy days a lot more and I don't share the poor me why m post because I need positive I need to see positive while in the negative spaces.  I also know that other people need to see that I get it and that they are not alone because being there experiencing something alone sucks. Not having answers to questions sucks. Not knowing sucks. I am still there some times. I may know about 22q but this disorder I have had been dealing with for 4 years apparently needs to teach me I need to open up more and reach out to others. So I'm reaching out to all of you if you read this don't let me hear crickets. let me know you read this post. Thanks for your support and I am not throwing up today, in fact, I have a doctors appointment, later on maybe I am not done with treatment plan but sometimes it needs adjusting because what works for others with this disorder does not work for everyone.

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