I'm sick of being a freak, that is the disabled lady with abilities. Just screw the whole "dis" thing.

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.