Will The Disaster Ever Go AWAY?

A friend once told me “we understand but some things can't be chalked up to your not feeling well” after I had told them that no one understands what I go through. Isn’t it funny how it’s so easy to say things? I know for a FACT that not one person knows what I feel completely and what I go through. That same friend is telling me that my actions are not from me not feeling well. Does anyone understand, that me not feeling well is who makes me me? No. Does anyone truly understand what it feels like to be me? I can answer that for you. NO. I do what I do and feel what I feel because of who I am. Being sick has made me who I am along with all the things I’ve been through in life. This has molded me. So much has happened in my life that I can not even father to type. I’m told I’m not the same person I use to be. That’s right, I’m not, I can’t even remember who I use to be. My life has been filled with sorrow and pain. How can I be that same young teenager who didn’t know what life would bring her down the line? That teenager was a lot stronger back then, yes I’ve always had a strong tolerance for pain, but no one understands as life goes on and the more you get sick and the more sorrow enters your life, your strength seems to whimper away. Everyone sees me as a strong woman. Much do they know it’s all a façade. I don’t think people understand what it feels like to have pain in your entire body and feel your strength being torn out of your soul. When I was 9-months-old I had pneumonia and was hospitalized, where I turned blue and very ill. From growing up in pain and trying to ignore it to having a few surgeries and a major surgery. From losing a brother from a heart disease knowing I will never see him again. “You need to get over it.” I will never get over missing my brother. It has scarred me and when he died, part of me died with him. Constantly at the doctors and in the hospital, that puts a mental toll on you and a physical toll on your body. Does anyone I know, know what it feels like not to be able to feel good? Not able to think straight because your head is spinning and your right side of your face and head are numb, your insides ache and you can’t stop trembling? The not knowing what is this pain coming from and am I about to have another seizure? The pain after the seizure. The excruciating pain that lingers inside after a year and half of having cranial surgery? The tumor that grew back 4 months later, the suffering and acceptance of having seizures, beside all my other health issues, which are not just a cold thing, it’s important things. Does anyone know how that makes ME feel? To accept the fact that I am ill? My whole life has been this way and you can say you understand but some things can’t be chalked up to your not feeling well. No, I’m sorry, I love all my friends and family to death, but me not feeling well has everything to do with what I do and who I am. From being treated for infections, with the medication that literally almost killed me. Another ride to the hospital… with transfusions being transmitted to my body. Needles pricked into my veins and pill after pill, painkillers being put through my IV that never put a dent to the pain relief. When I go to the doctors I’m told I was overdosed in the hospital, but they had to, it saved my life. Does anyone know what it feels like when you walk out of your house not able to walk feeling your spine being ripped out of you and the emptiness inside your soul reminisces about the message the doctor had given you when he said “they saved your life” I almost dropped dead. Does anyone know what that does to you?
All my memories mustered into fragments. In ICU I saw my brother who has passed away, leaning on the door frame of my room when I laid there crying from the pain thinking I was on my death bed. He was there to watch over me. Another fragment of coming out one of my surgeries when the nurse came over and said I don’t like the way you are breathing and quickly gave me oxygen. I didn’t even realize I wasn’t breathing right.
Fragments:
Listening to the MRI machine noise brings memories of all the time each part of my body was scanned. Worried with what they will find.

My breast tumor biopsy… “You want all three done?” “Yes” “Wow, you’re in for a ride, we only normally just do one at time, it’s going to be painful”. I didn’t feel a thing, but felt the anxieties of the Cancer that runs in my family that might be living inside my body. Waited and waited to get the good news that it wasn’t Cancer but I had to go back for the other tumors in my other breast. I never went.

Walking into the operating room to have cranial surgery. I wasn’t even rolled in. It was cold and big. I was so confused wasn’t sure if I was going to wake up from it.

I felt them rip the tube out of my throat.

“We have to do a bone marrow”. My sister cried for me not to do it because it was too painful. They never did it because they knew I would go back to NY and they would want to do it again. My blood count was at a number where they couldn’t do the bone marrow by the time I hit the doctors office in NY.

What is wrong with me?????

What will they find now????

Can they help me?

When will the pain and agony go away?

The blood was just surfacing to my skin and I thought nothing was going to stop it.

At the hospital I was told “That sounds like a seizure to me, why didn’t your doctor put you in the hospital?” “I thought I was having a stroke, my doctor said I was fine and just to take the antibiotic, why didn’t she send me to the hospital?”

I was dying, literally dying.

Why does my heart ache so much, and why does it still ache?

“You shouldn’t be going through all this… you are only 32”

“Here’s a rx for a breast sono and you HAVE TO get an echo done, I can here the click in your heart, you still have that murmur.”

Is my heart broken?

“I have given you all the pain meds I could give you, it’s time for you to see another doctor there’s nothing else I can do for you.”

“Clinically you are having seizures.”

As the doc held my EEG report in her hands… she looked at me sadly and said. “You are having seizures.”

“There’s nothing else we can do for you, you now have to see an epileptic sp
“The meds are making me lose my hair, my appetite, I feel so angry and aggravated, I’m now soooooooo sensitive, what are these meds doing to me?”

After getting out of the hospital I was on a high dose of treatment to bring my platelet count back up…. It was the most painful treatment. I just wanted to be held while I lay in my bed disabled. I wanted to understand why I always fall into pain. I wanted love.

I fell, and love wasn’t there to hold me.

I punched my back and still the pain took my punches with numbness.

I had to learn to walk again, use my hands again, open my mouth again. I was scared.

I WAS SCARED AND STILL AM!
These are only small fragments that go through my mind every day along with the physical and mental pain. I give love and I guess I expect too much love in return, I’m only human a scared human who doesn’t know if her life will ever change. If her life will get better with her health and broken heart. Will she survive the disaster that lives inside her?

#mylife #istillstad #alone #chalkedup