Trying to LIVE, not just exist

At the age of thirteen, I was emancipated. A year later, one of my younger sisters was kicked out by our mom and moved in with me. Shortly after, two men came into my home trying to accost my sister. I stood in the way and was beaten with a metal closet rod. They split my lip, fractured my shoulder, dislodged my skull, and bruised the back of my brain (I still have a "bruise" or a shadow that appears on an MRI). I now have "cathedral syndrome," which means if I lie flat or look directly up, I become disoriented and feel like I'm in a casket with the lid closing in on me. I also have migraines that are sometimes quite debilitating.

Health Challenges: HIV and MRSA

In the late 1980s, I moved back to Florida, and in 1991, I learned I had HIV. I only include this because HIV is an inflammatory illness that ages the body, joints, and internal organs faster than a body would normally age. I have also been on HIV medication for 20 years, and as we know, medication has its own toxicity, and most HIV meds deplete calcium, other nutrients, and can cause bone/joint fragility as well as kidney, liver, and heart issues.

This leads me to 2003, when I had an adverse reaction to an HIV medication. I wasted, which means I lost a lot of weight too fast, developed Kaposi sarcoma, which is a form of cancer, and had lesions on my legs, feet, hands, and arms). I also developed MRSA. MRSA (Methicillin-resistant Staphylococcus aureus) is a dangerous staph infection that developed on my left ankle and almost cost my leg from the knee down. Thankfully after multiple MRSA medications, one worked on the infections and lesions (because they became infected with MRSA). Now I have scars all over my body (which I call war wounds), ghost pains, and PTSD from the experience.

Education and Further Setbacks

After 5 years battling the government and selling everything I owned, I was granted SS disability. While on disability, I worked hard to recover and completed my Bachelor of Arts degree online in psychology in October 2010. This was something I always wanted and promised myself I would achieve. Then, shortly after graduating while riding my bike to meet a friend for lunch, a car decided to pass me on the shoulder of the street and hit me. I ended up with a concussion, two fractured ribs, and a punctured lung.

Work, Diagnosis, and Depression

Once I was healed from the accident, I decided to use my degree and got a job with a local nonprofit organization. I was hired but since there wasn't a full-time job available, I was given 3 part-time job responsibilities. I was also asked by the CEO to represent the organization on two local non-profit legal aid boards. So basically I went from 0 to 100 within a week (that was a HUGE mistake).

At first, it was great and I loved what I was doing but it took its toll. I was traveling all over the county I live in and overexerted myself. I ended up being constantly in pain and fatigued. I would find myself in the bathroom at work crying from the pain and discomfort. I became mean and verbally abusive from it. Finally I managed to see a doctor who diagnosed me with small and large joint osteoarthritis and fibromyalgia. I also went to a mental health provider who diagnosed me with depression, PTSD, and generalized anxiety disorder.

I was encouraged to quit my job or to plan on suffering a lot more than necessary. I did as suggested (because I was still officially on disability and was told that I could do so without penalty). Although this was true to some degree, Social Security determined I was no longer disabled based on previous information and I was kicked off.

I spiraled into a major depression because I couldn't do the things I used to and felt worthless and helpless. I started drinking heavily and almost lost my husband and my home. At one point, I thought of ending my pain permanently. Finally, after talking with my husband and friends, I found AA online and started attending, which is also around the same time I found CPA. I can contribute BOTH of these to helping me learn how to deal with my physical and emotional issues.

Shifting Perspective and Coping Mechanisms

I started focusing on getting the care needed and my overwhelming issues. Not just my constant pain and illnesses, but how I was managing them and reacting to them. My pain is constant, the types of pain play off of each other all day long, and it's never-ending. I used to focus on WHERE the pain was coming from and which illness was the culprit. It was very difficult to determine the what, who, why, and when of it. SO, I stopped trying to separate my pains and learned techniques and ways to deal with the totality of it. In fact, this year I was diagnosed with bursitis in both shoulders and psoriatic arthritis. Instead of dreading this and feeling sorry for myself, I just acknowledged it and let it go. Yes, this means more treatment and another pill but it isn't the end of the world.

I started meditating using different modalities such as guided meditation, visualization, and sound meditation (which IS my preference). I started focusing more on what I HAVE instead of what I don't have and my abilities rather than my disabilities. I started reading self-help books and stopped projecting into the future and the past. I spent WAY too much of my life lost in the future and the past. I want to live for today and for what I have in my life now. I left the past, and though keeping hope for the future, chose not to live there. It's not a place I want to visit or remain in.

I began working the CPA steps and though I haven't gotten through them all, I have gotten through a lot and learned a lot about myself and how to live with my chronic pain and illnesses in a more symbiotic manner. Basically, I'm in control but allow the rest to exist under MY terms.

I also learned to listen to my body and mind. I learned to slow down, reduce stress and stressors, which exacerbates my pain. I still do a lot of activity via advocacy and volunteering, but do it in a way that is constructive without being destructive. I'm on multiple committees and a volunteer secretary for a non-profit that my husband, a friend, and I created. I also still work, but now as an online tasker, working how and when I want to. I have income coming in and feel I'm contributing to the household.

I help around the house how I can and do what I am able. Some days a lot and other days a little, but that's okay. I don't beat myself up about it like I used to. I feel good about what I can accomplish on any given day.

I stopped worrying about what other people thought of my abilities or inabilities, what I look like, what they think of me, and whether they like me or not. To me, the important people know what's up, and they are the only ones that matter. The rest are not important. PLUS, I have too much going on in my own head to worry about what's going on in theirs. This awareness of ITSELF has reduced my stress and discomfort. It released me to be fully authentic and honest with myself and others.

Finding Strength in a Higher Power

One of the BIGGEST things that has helped (and continues to do so) is being in touch with MY higher power, Mother. I say mother because my mom and my stepmother were and always will be a symbol of strength and fortitude. They were my protectors, my confidants, and my friends. Mother Earth (Gaia) to me represents them. I can talk to Gaia whenever I want, wherever I am. I can be out in nature, petting my fur child (by the way, pets have healing powers), or in my massage chair. I can be in the middle of traffic, dealing with a stressful phone call, or anything else, and Gaia is ALWAYS THERE to calm me down and guide me. Because of Gaia, I let go of a lot of things that used to weigh me down. I send them off into the universe and let them go. It has taken A LOT of unnecessary burden off my chest.

The pain and discomfort are constant and never-ending, but at least I can still see the beauty that exists in this world. That is something I am very grateful for and is something to celebrate.