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Pain, Choices, Day Trips & New Medication

This week the pain has been horrible.  I have hurt 24/7.  I don’t know if it is the lack of exercise, rain, or depression, but I haven’t left the bed much since Sunday morning until today.  It has mainly been my hips and feet cramping, and it brings me to tears.

Update on Choices.  The judge denied my appeal, so I had to type another appeal.  By the time I finished, I couldn’t remember names and I was so foggy.  I have found that when I am already in pain, doing anything that takes intense mental concentration puts me into massive brain fog.  It is a typical crash landing without an airbag!  I can only assume that the people at Tenncare have no sympathy for my disability because this has been going on for months!  Truthfully it isn't as bad as the disability packet that I have to fill out randomly because they need proof I still have Multiple Sclerosis.  LMAO, do they think one day I will magically wake up and be healed?  It would be nice, but I see no signs of a cure!

I haven't worked on anything since last week and doubt I will this summer.  We went to Pickett State Park today, and the trail said 0.4 miles (700 foot), so I attempted it.  We got almost to the bottom, and I had to sit down on the ground.  My little dog Hannah loved it, so I watched her run and play, and I listened to my grandson and sisters children enjoy the remainder of the hike.  David took some pictures for me, and I slowly made my way back to the van.  My daughter wasn't too happy that I could barely breathe, and she lectured me, but I felt so alive and accomplished!. I love being in nature more than anything, and seeing the children enjoy a hike without electronic devices filled my heart with so much joy!

This afternoon I got a text, and I was jumping for joy (not really, but it felt like I was) because I have been approved for free Cosentyx from the Novartis Patient Assistance Foundation!  This medicine is used to treat Hidradenitis Suppurativa!  Then I got a text that the medicine has shipped!  I have amazing doctors, and I am getting the best care possible. I am not giving up.  Although I know my limitations and my life is different, but my life isn't over!

Love~Laughter~Truth

Tina



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We have to stop meeting like this....

Tonight I talked to myself.  I said,” self, why do you feel the way you do?”  Then I said,” self, we have to stop meeting like this because it's one o'clock in the morning”!  I laughed because regardless of the predicament I find myself in, sometimes I don't understand why I do the things I do. Have you ever had a random thought and wondered, “why did I think about that?.  I try to ignore my random thoughts and feelings, but sometimes they just come out when I least expect it. Example 1 ~ When I forget to take my medication, I feel everything.  The depression, sadness, and pain flood in, and all I can do is cry myself to sleep. Example 2 ~ I was watching season three of Anne with an E tonight, and it hit me.  I was crying and feeling very sad.  I should be happy because it was a beautiful ending. However, my mind was thinking about how they loved each other in their youth and found each other again. Right now, in my life, love songs and anything sappy makes me cry.

Beauty in the chaos

Early voting started Friday, so I went to town and voted in the States Primary.  It was a peaceful drive, and then Friday night, we watched the movie 2012. There are so many theories and conspiracies floating around online that the movie made me think about all of them. My thoughts quickly turn to religion and how none of us know when our lives will end. Humanity has gotten it wrong, so many times, and religious leaders continue to attempt to guess, but even the Bible says no one knows. One thing that I know for sure is the earth is a breathtaking place, and I continue to find small glimpses of its beauty amidst the chaos.  Just yesterday, we went to Fall Creek Falls State Park, and I took a dip in the cold water. Families and children were everywhere, laughing and playing.  You would never think that the USA is in an uproar. I saw no signs of social distancing or a pandemic.  I didn't see any mask.  Men were walking their dogs, and the beautiful smells of wood burning flo

My Reality

TennCare called today and requested a new PAE, and it got me to thinking about my daily needs. On social media, I tend to be very positive and encouraging or funny because I know how depressing being disabled can be, especially during the quarantine. I wonder if people see my social media and get the wrong impression of my reality?  Do they know that I published my autobiography and assume that I make money from book sales?  Do they see the videos I post, and assume that I don’t need help with everyday life? The cold hard truth is I need help every day with everything I do! I have grown used to people assuming things because I am capable of putting on a smile at a moment's notice.  As a trauma survivor, the ability to put on a fake smile becomes apart of your personality.  As a mother who had to fight to keep her daughter, I learned to shut my mouth and obey the system. I want to use this blog to make it clear that I need help with the necessary daily tasks.  I forget to ea