New Day, New Tests 

​Looks like I’m going in on Tuesday for even more tests. 
This time it’s a full scope checking for ulcers and digestive diseases. I’ve been asking for this test for YEARS! I was even told by my Gastroenterologist at appointment that it wouldn’t get approved, and I’d need to wait at least 6 more months for the full scope. That I had to change meds a few times, and I’d only get an upper endoscopy for now. 
Then all the sudden, my General Practitioner sees that it’s only an upper scope,  because he has to approve all my medical procedures,  and goes,  “No,  she needs both. She’s very sick.” And changes my order.  My insurance company approved it. Hmm.  
Makes me very irritated with my Gastro, because I HATE changing meds, and it puts my body through hell. Especially meds for my lower digestive tract.  It HURTS so very bad.  
I’m just glad I have a Dr who looks out for me like that.  He has been my physician for nearly 4 years now,  and has been able to push for things I need. My previous Dr often took the easy way out, or excused a lot of things he shouldn’t have.  But I am very thankful for the physician who stood in for him while he was on vacation once, and who I’ve been seeing since.  
He knows when to push me to see specialists,  and what he can and can’t help me with. He’s been a huge advocate for finding and treating my illness and not just my symptoms,  but not leaving me to suffer.  He was so frustrated with the ER Dr who reported me as a drug seeker,  because he knows I hate taking pills,  and fight to get off them, not on them! He knows I hate the high feeling from pain meds,  and sought out a pain killer that would specifically leave with me add little of a high feeling as possible! 
I’m just glad that I’ve got good people in my corner.  He’s also sending a referral to a neurologist of my choice that my insurance will cover.  When I was losing my vision,  he called me on his cell phone on the weekend to make sure I was ok.  We need more medical professionals like my Dr. I got lucky with him! In fact,  in that same clinic is my gynecologist,  and he’s awesome as well.  Central Orem Clinic employs some amazing Drs. And their medical assistants are just as awesome.  They email and call me.  They’re great about getting back to me as soon as they can.  They really just reach out,  and do their best to keep up and make things easy for the patients.  
Though… their reception staff isn’t the best.  Haha.


I’m Having A Hard Day

I’m having such a hard day.

People who are generally healthy don’t understand what it’s like to have chronic and acute illnesses meet.

It not only causes the general havoc that an acute illness like a cold can cause, such as runny nose or a cough, but it causes our chronic illnesses to flare up, and the acute illnesses to spread like wildfire through our systems.

So now all my chronic illnesses are in a full flare, and I’m miserable from those. Swollen joints, stiff body, upset stomach, guts gurgling like they’re running for president, etc. My head is killing me from my migraine illness, my vision is flaring so it’s blurry and painful, and my teeth hurt. I’m exhausted and worn out just from my chronic illnesses alone, right?

Add on top of that my cold. My lungs are in fire, and there’s mucus in them. It kills to cough, not only from that but my chemical illness pain adds to that pain. It hurts my neck, my back, my ribs, my stomach, my throat, my head, and my shoulders just to COUGH. Then there’s the runny/stuffy nose that adds to the migraine and swelling in my head. Blowing my nose hurts my neck, my head, my arms, my hands, my eyes, my ears, and makes me cough, which then hurts all of the above. My ears are so plugged up they are thriving non-stop and I can barely hear, and my throat is sore and scratched I can barely talk.

I need to be eating, but it’s hard because my body is rejecting most everything due to the chronic flare up, I don’t digest anything or absorb. It just goes right through me, and I get sicker and weaker.

This is what a simple cold does took someone like me, and I’m not even the sickest person I know. Not even close. I have bad illnesses, yes, but even my sister Mary has it worse than I do. Those with Crohns have it harder! Omg!

Today I’ve already had to change my clothes from accidents, and have ended up bawling my eyes out a few times. I’ve taken the max meds I can take, including Emergen-C and maxed out on cold meds, plus decongestants. I’ve also had homemade chicken no-noodle soup, spent at least a total of an hour treating my ears with hydrogen peroxide to loosen up the nastiness and pressure, and spent as much time resting!!!

Life as a chronically ill person on the daily isn’t easy. Take away the cold symptoms, and I’m still left with everything else. I smile, because I choose to, but it’s still hard. It’s still painful, and it’s still full of severe hardships. It’s a lot of years, self pep talks, and losing people. It’s not for the weak or thin skinned.

I’m having a hard AS FUCK DAY. You have no idea.

I’m often told not to share so much on Facebook, “because people don’t want to know”, or “it’s too private, you shouldn’t say that to everyone”. But you know what? This is how people get educated on what it’s like for people like me. Because otherwise all you’d see is my pretty face, my beautiful kids, and my happy moments. You’d never guess the rest.

You’d never guess I was terrified of being diagnosed with multiple sclerosis. That it’s really hard on the body, and I’m so scared to lose functionality. I’ve already lost so much functionality in my hands, and feeling in my feet and calves. I get numbness in my legs, feet, hands and arms daily. Half my fave often goes numb, and facial spasms are very common for me. This is scary stuff, and if I didn’t say it, you’d never know.

You’d never know how hard it is financially for someone like me. I get just under $500 a month right now in cash assistance and no child support to support me and 3 kids. That’s to pay rent, gas, toiletries, shampoo/conditioner, socks/shoes, school supplies, etc for me and 3 girls. Plus pay my copays for Dr visits, and medications, which are $3 a piece, and I have about 15 medications and at least 3-5 Dr appointments a month. You do the math. Luckily I have food assistance, or we’d starve. I have to be out of here by the end of January, and everyone wants $400 for one room, and don’t want to rent to a mom and 3 kids to occupy one room. We are likely ending up at the shelter finally. Because… what else can we do? Can you imagine the germs there…? It might actually kill me. We’ll just have to see.

And then there’s my personal relationships. I have an amazing boyfriend, and I’m so lucky he came into my life when he did. And some may think I’m so stupid and lame to be stressing out about my ex, but I’m so worried about him. We’ve been friends for so long, and he’s been so angry at me since I got in my relationship and I care about him so much. It’s breaking my heart that we aren’t even friends anymore, because it never occurred to me he’d not be in my life in one way or another. He broke my heart in love, and now my heart is breaking in our friendship. I can’t help it. When you care for someone so deeply, that doesn’t change or just go away. I’m worried for him, and wish I knew he was ok.

I’m hurting so bad because I can’t sleep. I can’t sleep because I have nightmares. Nightmares about what has happened to me, and those have really gotten worse lately. Since George Allred was arrested and charged with molesting a disabled woman. No matter how much time it’s been, and how much I’ve been through, until he pays for the things he’s done, I don’t think I’ll ever have closure! Luckily were on our way to putting him where he belongs. Not just for what he did to her, but for what he did to me. My case is open, the investigation is moving along nicely, and I have a victims interview tomorrow. It’s going to be crazy hard, and I’m so scared, but I know I can do this!

Emotions also have a heavy toll on the chronically ill, and if it weren’t for Aaron, I’d be so lost and broken right now. Is be so much sicker and unwell. It’s because of his caring, his support, and his general kindness that I’ve been able to keep my head about me. Between him and my therapist, I’ve been able to keep myself from drowning in my PTSD attacks, nightmares, agony, memories, fear, health issues, financial burdens, and all around life fucks!

So yeah… I’m having a really hard day, everyone. I could use your good vibes. I could use your good vibes, your loves, and your support. Not just today, but every day. Because no matter how happy and pretty I look… no matter how together and good I seem… I’m really good at finding the happy little things in the day to enjoy. But I’m having a VERY hard time in my life, and I NEED love and support. I need it as much as you’re all willing to give. I’m a badass, strong AF woman. But we all need love! No matter how much backbone we have.

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