Written between Jan 27, 2017 and Jan 29, 2017
Its 220pm. I’m sitting at my desk anticipating my 3rd and final biweekly infusion that starts at 3pm. After this, I go every 4 weeks. I am anxious. It’s odd; I’m generally not an anxious person unless it’s about cleanliness and organization. I truly despise dirt and untidiness. I’m not afraid of needles. The IV pain is tolerable. Why am I anxious? As I ask myself “why?”, my eyes tear up. My inner voice says “because this is fucked up! That’s why!” I guess I haven’t really come to terms with this. I feel good in between infusions but the day of… I’m antsy, unable to focus and quiet {not me at all…I’m quite loud}.
Recently, when I was explaining an infusion and the process to a close friend, she said “This treatment is your own form of chemo”. That really sunk in. It really hit home because chemo is a therapy used to keep cancer at bay and put those people affected in remission. The use of infusions… same goal. Once again, I think “how the fuck did I end up like this?”
When I take emotions out of it and stick to just logic, I know that I have contributed to this in some manner. I started working at the age of 13. By the time I was 18, I had multiple jobs. When I was 20, I had 5 jobs while attending College fulltime and this continued until 31 years of age. Why? I grew up in the system on welfare. I had to start contributing financially or my mother would lose her housing subsidy. I refused to be a part of that world, so I hustled. For 10 plus years my average evening of sleep was 4 hours. I rarely sat down to eat. I wore 5 inch heels for 12 hours daily {greatest days of my life.. sorry I haven’t mentioned my shoe\heel fetish.. 300 pairs of shoes.. that’s another blog to come :P} and pushed myself every day to the limit. By the age of 25, I had stomach issues and 2 significant bruises on my right arm. I was told the bruises were eczema. I didn’t question it further. I was young, invisible and had no concept of self-care; one of the only moments that I regret. I don’t regret the hustle and the life experiences it gave me. The reality is I wouldn’t be where I am today if I didn’t hustle. Since I left my mother’s care, I have never needed any assistance from welfare. I got out of the system. One of the greatest accomplishments in my life.
I do regret my lack of knowledge and\or care for my physical being. When the stomach issues started I was told, take breaks, eat while sitting down and get more sleep. I didn’t. At the age of 31, I knew those bruises were more than eczema. I was getting married and wanted them gone. Well my dermatologist did his job and discovered\diagnosed Mr. Tumid Lupus. Mr. Lupus had made his mark on me since my middle 20’s, and I went years without treating him. Again, I don’t regret the hustle, but I regret not listening to my body. I regret not taking the advice to slow down a bit. I regret not sleeping a little bit more. Now…I know my body inside and out…lesson learned. I know it so well in fact, I knew I was pregnant with my little Bum Bum {daughter’s nic name} within hours of conceiving and 1 1\2 weeks away from Auntie Flow date. My doctor thought I was insane…
The reality is… self-care is important. Work-Life balance needs to be front and center of all of our lives. Stress causes 99.9% of disease. North American’s are the leaders in autoimmune diseases, cancers, heart and stroke. ” Why?” Because we live to work. We spend less time on self-care, appreciating family, nature, all in all…life really. We don’t smell the roses, instead we count money and it’s literally killing us. I still work a fair amount… that’s the world of Child Welfare\Social Services. BUT I am very disciplined in my life-work balance. My family comes first- no matter what. My health comes first- no matter what. I do not work at home once I get home from work. When I am sick – I am sick. I stay home and care for myself. I take every day off that I am privileged to have and I ensure I do things that make me happy {shoes, travel, shoes, movies, ummm shoes} I laugh as much as possible. I make myself go out even when I have feelings of isolation and depression. I surround myself with those I love and who help keep me afloat. I get rid of the negativity… including people. I want to live as long as possible and in order to do that, I need to live…not work. I need to care for myself before I care for anyone else. How do you care for yourself? Really think about that question. You may be surprised with your answer…
That is so important to take of you , knowing your body , I too have and live it diagnosed at age 28 in and out of hospital flare up fatigue . I have Lupus SLE fibromyalgia degenerated herniated disc vision impaired also affect my heart I’ve been off of work from 2010 try every drugs out there for lupus I’ve been on infusion five years now I also had chemo in the past . Thanks for sharing
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