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.  

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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.

Gastroparesis

Gastroparesis

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