Who Am I?

\post01\ 02.23.2023

My name is Alia and "motherf***** I’m ill". Like actually though. I’m twenty something and enjoy reading, watching movies, cooking & baking, singing, and watching anime. I’m on my diagnosis journey where I just have a bunch of symptoms that make my life a little difficult. I’ve always wanted to start a blog to share this journey with people who are going through similar things or just a way to share in general. My own personal therapy in lieu of a therapist I guess (while I’m trying to find one). I am trying out this blog thing to see how it goes. So – Welcome to my life. 

What are those symptoms you ask? I’ll name the *top five* most annoying things:

1. I’m always so damn tired and cannot sleep. The fatigue is one of the worst things I’ve experienced in a long time. I fall asleep standing up, walking, talking, working, etc.

2. THE PAIN. Oh my goodness gracious the pain. Lay down – pain. Wake up – pain. There is always pain. I have abdominal pain that is officially chronic. I have abdominal pain with movement, rest, touch, and it is even unresponsive to pain medication which is fun. I have tried dilaudid, morphine, fentanyl, hydrocodone, bentyl, mirtazapine, olanzapine, nortriptyline – all of the pain medications and antidepressants out there. I lived an active thick girl life style. Traveling, working out 4 to 5 times a week, eating healthy, and weighed around 220lbs at 5’7”. I know that sounds very heavy. But keep in mind I was deadlifting and squatting 400lbs at one point and had just hit a bench press PR right before all of this happened. Ugh. Anyway.

3. THE PAIN part 2. I have what is called “postprandial” abdominal pain. Every time I eat or drink anything I get what I like to call “the stabbies”. What are the stabbies you may ask? The stabbies are the sensation I feel whenever I eat or drink; like a million tiny razorblades slicing and stabbing my insides. SO I DO NOT EAT OR DRINK. I know, I know. It sounds crazy. “Just suck it up” one may say (just like most of my doctors say). But imagine being in the worst pain of your life because you opened your eyes or performed some other basic bodily function – it’s not so easy to suck it up. Because my intake had decreased so dramatically I was dying; skin mottled, lost 80lbs, bones sticking out, breasts deflated, ASS DONE FELL OFF. Not a single one of my clothing items fit me and I had to spend a bunch of money on new clothes that only temporarily fit because I continue to lose weight. Now I have a feeding tube that goes directly into my intestine so it completely bypasses my stomach. This has quintupled my caloric intake, but I still continue to lose weight…

4. Gastroparesis – kind of. According to Mayo Clinic, gastroparesis is a condition that affects the normal spontaneous movement of the muscles (motility) in your stomach. I have delayed stomach emptying and a slow intestine. This could be contributing to the pain that I experience but a lot of my docs don’t seem to think this is related and I’m not sure why. Because everything moves so slow and releases into the intestine spontaneously, my blood sugar takes random swings downwards causing me to have altered mental status. And because my intestines move slowly I’m prone to TMI fecal impactions (stool back ups).

5. THE SEIZURES. I have seizures whenever my blood sugar drops quickly that present as altered mental status or focal aware seizures where parts of my face jump or droop. Because of state laws, you cannot drive until 6 months of no seizures or altered mental status episodes. So that takes away a lot of freedom.

 There are plenty more but these are the ones that make my life the most difficult. I’m always open to connect with others with similar symptoms or those who just wanna chat about things. I will try to blog about different topics once per week and do a little vlog action over on the once banned app (@ro_lamperouge) occasionally as well. Thanks for reading ✨