February 27, 2016

 

 

Have you ever thought you were about to be killed?  I did yesterday.  I had vocal cord surgery so that I can speak again.  The tissue in my neck got manipulated during the previous surgery to remove my thyroid tumor.

            My surgery yesterday went amazingly. The anesthetist was the most wonderful medical professional I’ve had in a long time.  She was on top of her game and was very kind.  The surgery went quick and perfect.

            My dr, mom and I had decided I should stay overnight in the hospital to monitor me incase I would go into anaphylaxis from the substance they inject into the cord to make it semi functional...

February 23, 2016

Dear Self,

 

I want to tell you it will be ok and that life will get better.  I want to go for a walk and hold your hand and say that every thing will improve. I want to laugh with you about all the insanity that life has handed you, but I can’t. I can’t because I don’t know for sure that what you have endured is truly at some point going to stop.  I cannot say whether or not life will get easier, less messy and just plain simpler.  HOWEVER, I can tell you that you have life and that you must embrace it.

 

The old you was a mess long before illness struck.  I guess one can say you never really knew a life without illness as your diseases are genetic, but as a kid, you didn’t suffer.  Through...

February 23, 2016

There are different stages to acceptance of being chronically ill.   The hardest part for me to accept is that I am completely dependent on others for my care.  I got in the voice dr this morning last minute.  Thankfully, my mom is off of work today so she can bring me. Problem is, it’s snowing and I live now opposite side of the world from my parents.  She will drive here, pick me up, drive to dr, bring me back and drive home.  Probably all about 100 miles or more.  Insane right? I feel horrible about it.  BUT I have no choice; I can’t talk nor breathe well so I am stuck. I feel so horrible that this is the way my mom has to spend her off day.  I have guilt that people have to always stop what the...

February 21, 2016

Today is one of those days I have nothing in the reserves to pull from. I am mentally and physically exhausted and yet the last 48 hours all I’ve done is sleep. I am feeling like I just want to give up. 

 

I had my surgery just over a week ago to remove tumors on my breast and on my thyroid.  My breast has healed wonderfully and though is all black and blue and looks atrocious, actually is causing me very little pain.

 

My throat on the other hand is getting more and more painful by the day and apparently my vocal nerve or cord was damaged during surgery because I have not been able to talk since the surgery.  I also am having a hard time getting proper breath. 

 

So aside from passing out from my d...

February 14, 2016

Some day I hope to understand and know the cause of why I keep getting these damn tumors.  I had two more removed last week.  One on my thyroid, which was large and another in my breast which was smaller were taken out.  I am recovering nicely, my throat is quite sore but I get better day-by-day. I wish I could understand, I wish medicine was able to tell me why, but I cant because they don’t know.  I am so sick and tired of being sick and tired.

            Aside from my throat and breast being sore my bottom left lip and chin are completely numb.  I guess they may have hit a nerve or something taking out my tumor.  It’s the most annoying part of the healing process so far.  I feel l...

February 7, 2016

     

          As a kid all I ever imagined to be when I grew up was a mom.  I would play with my baby dolls and care for them as if they were really, truly in need of my care. Playing house was what I liked to do. I was the youngest child and so I never go to experience having a baby in the house.  The closest thing I got was a few cousins and the neighborhood kids.

            I always dreamed I would have 4 kids. I knew I wanted more than just 2 because it gets lonely only having one sibling.  I don’t like the number 3 and so I thought 4 would be perfect. I used to daydream of baby names, places we’d go as a family, and every thing that my parents did for m...

February 5, 2016

The first time I ever knew somebody who was sick was in 1994 when my grandmother had breast cancer. My dad has been sick my whole life with bad psoriatic arthritis but he never really let us kids know he was in pain.  With Grammy, it was obvious.  She lost her hair, she was weak and for the first time in my entire life I had seen her vulnerable.  Her usual stoic persona was cracked and I remember that leaving a huge pain in my heart for her.       

            My grandmother was like my best friend growing up.  She was there for me for everything, and still is to this day.  20 years after Grammy had her cancer I was diagnosed with a lump in my left breast...

February 4, 2016

Sometimes in my head I find myself at a pity party, doing shots of tequila, dancing on a table.  I get so upset sometimes that this is the life I was given that I lose focus of all the good I have around me and how many people have it so much worse.

            I am so lucky to have diseases that in themselves shouldn’t kill me. The complications from the diseases are what are deadly.  Anaphylaxis, falling and hitting my head, brain bleeds, etc. are my biggest worries.  My illness shouldn’t take my life as long as I am careful and follow every dr instruction and protocols and take my meds.

            Life is not fair and if you ever need an...

February 3, 2016

 

I hate going to bed at night. It takes me all day to begin to feel human and then by 6pm, when I am finally feeling somewhat conscious, I am so exhausted I have to go to bed. It’s a vicious cycle. I get anxiety over what will meet me when I wake in the morning. I never know how my body is going to act.

 

Sometimes I wake up in the morning eyes inflated shut, hives on my swollen red face, unable to even sit up without passing out. Most mornings getting my tasks done are impossible; I simply cannot physically even make it to my chair to eat whatever I have for breakfast. Some mornings I don’t even eat because my body decides it wont process, swallow or agree with whatever I actually get in my mouth. 

 

...

February 3, 2016

 

       My life is amazing.  I have a wonderful group of people that love and support me with every choice I make and thing I do.   I have a man that not only stands by my side but also catches me when I fall.  I have two amazing parents who have dedicated both their lives to my success.  I have a grandmother who is one of my best friends in life and that I call and can talk to for hours. I have in-laws that are so absolutely amazing sometimes I have to pinch myself.

     I have two best friends who know exactly how my brain works and are always there for my emotional meltdowns. I have friends from high school and college that pop in and out whenever they’re i...

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