Back to December 2017. I managed to continue my treatment program in Canada. 7 days a week. Without the support of my husband in Mexico, and my parents, sister and nephew i couldn’t have continued. There were nights when the last thing I wanted was to be around anybody. But my mom prepared precooked meals to take back with me and kept me fed whether it was at her place or not. My sister checked in regularly and kept my spirits up.
I took a course at the hospital on dealing with a chronic illness. It was tough, it was raw, emotional, enlightening all rolled into one. It thought that one of the hardest things about living the chronic life was teaching others how to act around you.
Believe it or not there is anger when people say to me I’m so sorry. I think what are you sorry for ? You didn’t give this to me. When people jump up and do something for me. This came out loud and clear at the dinner table at moms. I was having an extremely bad day. My hips weren’t functioning well, my back was extremely soar, sharp shooting pains and swelling in my joints. I also had been awake for 3 days at that point. I couldn’t form my words well. If you asked me something I mumbled trying to find words and it took what seemed like an eternity to speak.
I wanted ketchup from the fridge. I braced myself on the table and struggled to get up. I was hunched over the table and my mom jumped up to get the ketchup out of the fridge. I slammed my fist down and yelled at her to sit down.
I was crying. She started to cry.
The emotion was so strong. I told her to let me do this. Today I can. It’s a major struggle but today I can! I told her to celebrate these days because a few days ago you were cutting my food and fed me. She, through her tears explained that parents aren’t supposed to see their children suffer. She can’t just sit there and watch. Yes I was struggling mom. And I can’t imagine the feelings you have watching me. Unable to make me better. But I must do this and again let’s celebrate the days I can.
I don’t want sympathy or pity. I want your support. Catch me when I fall. Be with me. But all I have left right now is the little bit of independence that allows me to get that ketchup. Because from 7am until 4pm the doctors and nurses make all my decisions for me. Lyme makes the rest. We both cried. But I think deep down on some level my family understood.
I continued treatment and January 31st I had mid treatment bloodwork. The news was not good. I had worsened and was not responding to therapy. Gary and I talked. I spoke with the doctor and asked what chances of improvement is there if I continue to the end of February. There should have been some progress it’s been since December 14 2017.
Gary and I decided that I would give two more weeks of treatment and requested blood work again. If there was a marked improvement I would stay. No improvement I would discontinue.
I discontinued treatment two weeks later. Devastated. Defeated. Again. People didn’t believe that there was no cure. This again built up anger inside. I was already defeated and now I was perceived as a failure for not fighting. What people didn’t understand was this is my new reality.
This is Warren’s new normal.
It was a painful goodbye to my family. I returned to Puerto Vallarta MX February 9 2018 in almost as worst shape as when I left.
What I had going for me was I had started to gain weight. The doctors had put me on Oxi-methalone an anabolic steroid used for anemia. I also was on antidepressants or what I call my happy pills. They helped take away the thoughts of suicide and leveled my mood swings. My doxycycline was increased from 100mg twice a day to 200mg.
This was Warren’s new normal. And I had to teach everyone this all over again.
Warren Bennett – Chronic Lyme Disease