Why Don’t You?

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Meibomian gland dysfunction. 

That’s the technical term for my eye issues. Also my lacrimal gland isn’t functioning properly. It’s caused a slew of problems to occur in my eyes,  including but not limited to,  my optic neuritis, the bulging vascular issues,  and slowed nerve responses.  Wahoo! 

Luckily the treatment for these are false tears,  which is just eye drops, and a nightly treatment of warm compresses and eyelid massages until the glands open up and start functioning again.  

I did my first treatment last night…  woke up to a BIG PUFFY FACE,  and many angry, swollen glands all over my body.  This isn’t going to be easy on me,  because what is,  right? Haha.  

Stupid freaking body.  It’s like,  “HEY! I’VE BEEN WORKING ON THAT MEIBOMIAN GLAND DYSFUNCTION FOR YEARS! STOP IT!!” 

Ahhhh. My body is something special.  A moody 82 yr old crazy thing.  For those that are counting,  in the last 3 weeks shone we’ve found:

Cervical spine fractures

Cervical spine bone spurs

Cervical spine osteoarthritis 

Cervical spine degenerative disc disease 

Thoracic spine degenerative disc disease 

Thoracic spine schmorls node herniated disc

Lumbar spine degenerative disc disease 

Lumbar spine schmorls node herniated disc

Lumbar spine posterior/left disc protrusion, causing a small amount of left neuroforaminal narrowing. 

In general, multilevel mild degenerative disc disease. 

And now meibomian gland dysfunction. 

I’m sure I’m leaving things out,  but I’m a bit overwhelmed.  This is on top of everything I have gone through and been diagnosed with since 2011. 

Rheumatiod disease doesn’t go away. It actually continues to destroy my joints and muscles.  Same with my osteoarthritis in my other joints.  In fact, all my joints in my feet,  ankles,  knees,  hips, shoulders,  elbows,  wrists, and hands have it.  Now we can confirm my back and neck has it as well! Lovely! 

I still have gerd and severe ibs. In fact,  most of my meds I take treat me for those.  I have a lot of issues and problems with my digestive system,  and about 18 inches of it is so damaged that if I am too active, it gets irritated and bleeds.  Yeah,  severe ibs puts pressure inside the intestines and can cadre internal blistering and hemorrhoid type issues,  which is what I have,  and it can cause major internal bleeding when irritated. So you can just imagine how hard it is not to irritate it with a seriously bad back like mine,  muscle issues from my other ailments,  and not being able to flex my abs much,  seeing as it’ll pull those intestinal walls and rip my internal sores open. Its a fun game of “What hurts more” i like to play.  

Fibromyalgia is not curable, but luckily the pain levels do fluctuate more so than the other ailments I have.  I know a lot of people think fibromyalgia is a bullshit illness,  however its been long documented in history,  and is referred to as “The Princess and The Pea” illness.  It causes the nerves to become ultra sensitive,  and IS AN ACTUAL MEDICAL ILLNESS! It’s been researched heavily, and they’ve been able to prove that those of us ergo have it react differently to pain stimulation, both in our nerves and our brains.  I have an actual diagnosis from a rheumatologist,  and I’m getting tired of people thinking its some bullshit excuse of an illness. I hate the damn exhaustion, the sensitivity,  the medications.  I hate it with a passion. It is real.  It blows.  Its my body. 

And visceral hypersensitivity! This one goes right along with ibs and fibro! It’s where I am SOOO lucky andI get to feel my intestines functioning and processing my food.  I actually feel my digestion,  and it HURTS.  The best part is that there’s a particular medication, but it’s $40 a month and my insurance won’t cover it. 

Celiac!!! A fun allergy to gluten. Wheat,  barley, and rye. Wheni eat it, I bloat, get very ill, and insanely moody! I swell up like a balloon,  and get insanely lethargic.  Basically my body freaks out and shuts down.  So fun! 

I actually have more little things wrong with me.  

How I react to bug bites.  How I react to grass.  To latex. To certain medicine.  There’s ado many random things! It’s insane.  

There’s people who are on my friends list,  HELL, who are in my family who don’t believe I’m suffering and I’m just dramatic.  That I’m over reacting,  and blow things up.  That I’m “too loud” and “talk too much” about things.  Nobody takes it seriously because I’m so vocal.  

But… they aren’t the ones going through this.  They aren’t the ones who are physically and emotionally dealing with this agony.  Who go back and forth from numb to intense tingling and pain. No! I am. I’m the one whoI deals with that.  

You aren’t the ones dealing with the blood loss, the vision loss, the loss of feeling,  the loss of friends,  and housing and jobs! No.  That’s me! 

You didn’t lose your dignity and pride and privacy! You didn’t have to beg people for help, and live place to place,  and have people call you names behind your back,  and stop being your friend because it was safer to believe you were a liar than to believe you were THAT SICK.  

You didn’t have to drag your beautiful daughters to a disgusting homeless shelter,  and get so sick you were legitimately afraid you were going to die,  only to have people stare at you,  and roll their eyes. Act like you’re such a drama queen again.  No.  That wasn’t you.  

That wasn’t any of you getting brain scans with new brain lesions on it,  and having to keep yourself together while the one person you thought you could always rely on disapears, and lies to you.  While everyone is whispering About what a mooch you are,  and how normal you look,  but you’re in agony every day.  

That’s me. I have been through hell and back just the last few months,  and there’s a handful of humans who have been there for me. 

I hate how many have doubted me.  

Said awful things about me.  

Been awful to me,  or about me.  

I even had someone who was sharing my gofundme and telling people I was selfish for keeping my children,  and I was a bad mother.  I stopped sharing my gofundme because YET AGAIN,  people were being awful about me.  

I’m a very sick human.  I legit sprain my elbow from brushing my hair.  I have at least 20 sores on my body right now from mosquito and spider bites.  I have a hard time wearing regular pants. And I can no longer wear bras with ANY kind of clasps.  I break out in hives.  

Im going through a really shitty time in my life, and I’m lucky enough to be around some amazing humans. But some of you are not so amazing to or about me,  and you don’t even know the truth  about me.  You just make assumptions because I’m pretty and put on a smile.  

I put on that smile for ME! To get me through this shit. Because if I don’t smile and joke my way through this awful stuff,  it’ll kill me.  It will literally take my life. 

So maybe instead of judging and trying to decide whether or not I’m sick enough for your point of view for my diagnosis, maybe just accept that I’m fighting off my own demons. Because this isn’t just physically hard,  it’s mentally and emotionally hard. And even though I can rise above the bullshit most days, sometimes knowing that there’s that doubt in the minds of people i care about… sucks. 

Because I believe you when you say you’re hurting.  Why don’t you believe me?

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