I have been learning a new level, type and duration of pain. I’ve always had a high level of pain tolerance. When I had my thoracic outlet surgery (aka my top ribs removed on both sides) the doctor and the nurses both couldn’t believe I had been through the surgery I had because I was dealing so well. That was the most intense pain I had felt, that is until the last 2 weeks. I’ve had pain in every fiber, every cell of my body. Pain that makes you want to either implode or explode.
The last week has been the worst. I spent days in bed, something I didn’t think I could ever do, no matter how bad I felt. Guess I was wrong. I was so cold and sweating at the same time. Just to have my super soft sheets touching my skin burned so intensely. I felt like I had the worst sunburn of my life, luckily it was just on my entire back and biceps/triceps.
For about two days I needed my mom to press with her entire body weight on my hips and certain point in my back just to be able to move. It was “fantastic” to not be able to move my legs. Again I needed my mom and we figured out a system. She would bear with all her weight into my hips from behind for as long as she could and then she would literally pry my legs apart. I needed a rest before she had to pull me up to a upright position and then pull me up onto my feet making sure my legs wouldn’t give out.
So its been a rough couple of weeks but I’m still fighting. Every day is a mystery and a battle. I never know how I’m going to feel and what new “trick” these diseases are going to throw at me.
As I sit here writing this I have a plumber cutting a hole in my kitchen ceiling to fix a leak from my shower drain. (BIG thanks to a friend who gave me a great plumber:) Its just another thing going wrong. Besides being sick the state and the federal government are doing NOTHING to help. I have still NOT started getting my retirement checks. It took over a week and half to get a call back from my social worker. I STILL HAVE NO INCOME! I HAVE NOT HAD A PAYCHECK SINCE MID FEBRUARY!
Honestly, the last 2 weeks have been extremely challenging. My grandmother just stopped by and in the process of trying to reassure her that I will be ok and better than I have in years when this is over, it was a pick me up for me too. Days when I’m confined to bed its a different story. I have never felt more connected to and aware of my body and I can feel what is happening inside of me. It makes me question why God gave this to me and/or what I did to deserve this. I believe GOD HAS A PLAN, I just wish it weren’t so top secret. I know I have addressed what this disease has taken from me. Most days I still focus on the positive but I do have my “dark” days, days when the guilt of what its done not only to me but to my family. My grandmother cries almost every time I see her and definitely every time I talk to her on the phone and no matter what reassurance I give her that I will pull through this, she is never comforted. My mom has had to uproot her life to take care of me and be my “nurse.’ I have had my pride stripped away but I think its actually what I needed, my rock bottom…my way to start over and be the person I’m meant to be and do the things I’m supposed to be doing.
I had my first good day in over 2 months this past Friday and I probably overdid it a bit but I needed to take advantage of it. My mom and I ran some errands. We stopped at JC Penny’s and I walked with my walker, having to have my mom push me at times while I sat on the chair part of the walker. Even as little as a month ago I would have mortified (what if someone saw me that I knew? or what must other people be thinking? or just my pride in general.) But proud replaced pride. I was proud to be up and be moving. Proud to spend time with my mom. Proud I had fought damn hard and earned a good day.
While things continue to go wrong at every turn (Murphy’s Law.) But I’m remaining strong and I’m still not quitting.
The one thing that surprised me the most is how easily I have been forgotten by my friends. I’ll admit that I’ve become terrible at returning text messages, most days I don’t have the stamina to have a conversation in text. Even people that I thought would be there for me are no where to be found. Part of me knows that the standards I hold for friendship are completely different from what most people do. I can’t help it but I’m a loyal person, I’m Irish and Polish and we always hold our word. Its really all you have. And I admit that I have lost touch with a lot of people over the years as a result of wearing a certain mask to protect myself for getting hurt. It still saddens me to know that people I loved, just aren’t here. I get an invitation to go to an event (for someone else) from someone who is not currently speaking to me and has not reached out at to me all. Maybe I get the invitation, but if that person had bothered to reach out they would know that I am beyond too sick to handle it.
I have decided to love more openly. To be more kind. To forgive & let go, but never forget. What people of my generation really need to know is that its QUALITY NOT QUANTITY. And yes, I’ve known this for years and cut a lot of people out (the poison people), I am putting the time and energy into the relationships that I have left (it will be much better when I am better.) I am done competing in the world. One tree does not compare it to itself to another, it does not say “I’m prettier than you” or ” I’m better than you.” I NEVER thought I’d have problems keeping weight on! I see my weigh going down (I lost almost 10 pounds in 7 days, I see my muscles atrophy and my strength diminish but my soul is growing stronger.
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