My best of friends don’t always know what I struggle with. A lot of what goes on in my mind I keep inside. I live with uncertainty every day. I never know if tomorrow will be my last. I suffer from chronic health conditions and I am not always in the best of mental health. I wake up everyday and think of the positives, even when I know I am not feeling my most positive. I go to work in pain but I smile at everyone and life everyone up. I live to make people laugh even when there are days I don’t feel like laughing myself. I see the good in everything and everyone. When someone is cussing at me, or someone is acting out in public, I try to remind myself, “damn they are really going through some shit deep down.” We all have our demons and negativity we fight through.
I have been riddled with medical conditions over the years and the doctors cannot give me a straight answer about any fucking thing. I have had numerous abnormal blood tests. I have been diagnosed with macrocytic anemia. This is normally caused from an iron and B-12 deficiency. But the kicker? Both my iron and B-12 levels are normal. My red blood cells are too large, my red blood cell count is low. Because of the macrocytic anemia, I am consistently fatigued. It doesn’t matter how much I sleep, I am constantly tired. I am mentally exhausted. There are days when I just want to stay in bed all day because I am either too tired to move or just too mentally exhausted to do anything. Here lately I have had more abnormal days. I have had a positive speckled 1:80 titre, which can be an indicator for lupus. Typically it is nothing but coupled with all of the other lupus symptoms, my doctor stated there is a high chance I have lupus and he wants to keep an eye on my symptoms.
MY hair has been falling out, a lot more than the normal falling out rate. Handfuls at times. I was in hospitalized for 3 days with chest pain and the hair loss caught the attention of my cardiologist. She asked me about the hair loss, how long it was going on for. She stated the amount of hair in my hospital bed was completely abnormal and I should speak with my doctor about it. I get a dry skin rash over my chin and the sides of my nose, my nails have become brittle and are developing ridges. My toes sometimes get cold and have a weird blue/grey color. I have difficulty breathing. I was diagnosed with kidney disease in 2013, I was diagnosed with neuropathy in 2003, I get monstrous, excruciating cramps in my feet not caused from a magnesium or potassium deficiency and my doctor cannot explain it. I have chronic joint pain, something somewhere is ALWAYS hurting. I refuse to take any narcotic medication. My right hip “doesn’t work” anymore. It is extremely difficult for me to climb up stairs without severe pain. My leg cannot lift up high enough and my muscles don’t seem to cooperate. I have chronic muscle fatigue. My muscles give out easily with minimal or almost no exercise. I have panic attacks for no reason. I will be just laying in bed watching one of my favorite shows like The Mandalorian or The Clone Wars, something fun and my heart starts racing and I get chest pain. I have chronic headaches. Over the last year I have developed a gluten sensitivity. If I eat anything with gluten my entire abdomen swells beyond belief and becomes grossly uncomfortable and at times painful. I have major inflammation in my body all the time. I have chronic kidney stones and kidney pain at times. I have also been diagnosed with diabetes (which my doctor believes is a false diagnosis because I have had normal HbA1C for the last 16 years), atherosclerosis, and chronic fatigue.
These are my struggles of my every day life. I don’t take any neurological medications or narcotics. I take ibuprofen and Tylenol for the the pain. I take muscle relaxers at time to try and stop the muscle pain and weakness but they don’t typically help. I take Baclofen and methocarbamol as muscle relaxers, at least they are not sedating . I take Turmeric with bioprene to help with the inflammation I am riddled with. My gut has been so swollen as well as my feet and hands. I take trazodone to sleep because of my brain injury. I take a bevy of OTC vitamins including D3, Magnesium, multivitamin, vitamin C, B complex with B-12, CoQ10, collagen peptides to try to stop my hair from falling out, biotin, keratin, cranberry pills, black cohosh for my menopause.
Despite all of these issues, I still persist and keep my head up. I have all but given up on an answer for the cramps in my feet and getting a lupus diagnosis. My doctor is near positive it is lupus. I am normally an upbeat positive person, spreading love and joy, but the last couple of weeks it has been very difficult. I put my mask on and call it a day. I do love my life. I have a great life. I have an amazing career in child welfare I absolutely love. I live comfortably. I have every reason to be happy, except for my health. So this weekend I am going to go to my happy place and I am going to get my groove back! I know this COVID-19 pandemic has put a HUGE dent in my social life. I love going out to the theme parks and making new friends, just talking to people. I think not being able to do that when and where I want to has caused some mental anguish and negativity. I want everything back to normal. I want my life back. I NEED my life back. I need to be social again. I went out last weekend on Saturday and had an amazing time. It was the first time I had gone out since COVID-19 hit us hard in March. Seven months is too long for me to go without positive social interaction. I need to find that happy place again. I have so many positive things going on right now, but it is hard to feel positive when I am staying cooped up in my home with little to no exercise and constant pain. Hopefully after this weekend I will have some sense of normalcy.
“If you can dream it, you can do it.”-Walt Disney