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.

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