Women of H.O.P.E. (Health Occupations Promoting Education) will be hosting its forth annual HPH 5K RUN/WALK at the Miramar Regional Park on Saturday, October 28, 2023 at 7am. The main goal of this run/walk is to help bring awareness and support to those who live with autoimmune diseases, some, that result in devastating hair loss.
This life changing event aims to bring people together to celebrate the lives of those currently battling an autoimmune disease, remember loved ones lost.
The event helps to raise funds for hair prosthesis (wigs) for women and men with hair loss due to an autoimmune disease and other areas of need.
We invite walkers, runners, joggers, and rollers (baby strollers and wheelchairs) of all ages to come out and participate. Even if you can’t join in the race, come support a great cause and have a good time doing so!
I HAVE MIXED CONNECTIVE TISSUE DISEASE. MIXED CONNECTIVE TISSUE DISEASE DOES NOT HAVE ME
Tanya and MCTD
If I had a dime for every time I heard “you don’t look sick” over the years, I probably wouldn’t have to work anymore. Mixed Connective Tissue Disease is an autoimmune disease in which the body’s defense system attacks itself. Most of the times the abbreviation MCTD is used to refer to this disease. Unfortunately for me, I couldn’t just have one disease on the list of autoimmune diseases. I have several. MCTD is referred to as an overlap disease because the signs and symptoms are a combination of disorders, Lupus, scleroderma and polymyositis. People with MCTD may have a combination of various autoimmune diseases.
In 1994, during the Christmas holiday, I tried to get out of bed and couldn’t move. I was stiff as a board, and every bone in my body hurt. I was completely fine on Christmas Eve. I was enjoying the holidays, when out of nowhere joint pains, fatigue, malaise, cold bluish discoloration of my toes and fingers rendered me helpless; and riddled with excruciating pain. My body was under attack, and I was not equipped at that time to deal with the war that was raging inside of me. I was in Law School at the time and could not afford to be sick. My journey of going from doctor to doctor on a quest for a diagnosis began. I had a positive ANA, but no one could tell me what was wrong until 1998.
There were times I wanted the ground to open and swallow me up. The pain was unlike any pain I had felt. On a scale of 1-10, my pain level was 15. Medications in the form of narcotics, steroids, chemotherapy, and biologics were my only options, so I could have a quality of life. It became apparent to me, that the doctors and I had a difference of opinion on the definition of quality of life. The list of medications that I have had to ingest, will blow your mind. I take over 20 different medications. Some daily, some weekly, some every 6 months. I would be remissed if I didn’t mention the weekly chemo, Methotrexate, which is partially responsible for the loss of all my hair. That’s what 15years of ingesting this medication can do. I’ve been told I have a nice shaped head. Thank God!
I can probably write about how I feel when I have a flare, the feeling of guilt I have knowing I can’t actively participate in regular familial activities. They didn’t sign up for this. I could share when I am in bed crying because the pain is so intense I pray for God to take me at that very moment. I could tell you about how I spend time dreaming about how I was going to be a powerful attorney, a force to be reckoned with. I’m grateful to God that I was able to obtain my Law degree, work for some firms and now I have my own firm. Honestly, telling you these things will not assist anyone who has an autoimmune disease/disorder.
After going through several hospital admissions, surgeries, IV biologics, IV nutrients, pills, injections, etc, people look at me and say “wow I thought you were sick, you look great.” I reply, it’s only because of God’s grace, and mercy that I don’t look like what I feel like. God’s has a plan for my life, so I continue to push forward.
If I had to impart some advice to those who are battling an illness; learn to speak healing, joy, and happiness into your life. On those challenging days when you are asked how you are feeling; respond with a positive attitude. This response will help you conquer your obstacles, and help you have a great day. You will have “good days” and “great days.” When life gives you lemons, take out the seeds, plant them so you have your own lemons. That way not only can you make lemonade; you can make pie, you can sell some lemons, and get paid. My point is don’t let your illness stop you from fulfilling your dreams. You just have to trust God, be creative, and believe in yourself. You are not the disease that ravages your body, and creates challenges out of menial, daily tasks. You are a strong individual who on a daily basis must mentally, physically, and spiritually choose joy, peace, happiness, and love; in order to enjoy the quality of life that you were blessed with. MCTD is not me, it’s just a reminder of how beautifully flawed I am; and allows me to accept the beautiful flaws in those around me.
President of Women of HOPE