There are times when it can be very difficult living with a terminal illness and still live a regular life. There are days when fatigue can become very overwhelming, making a regular day hard to manage. There has to be a balance of not only physical health but also spiritual, mental, and social health. In order to be healthy and function in this world, we have to take care of ourselves in all aspects of our lives. You can’t be healthy physical but have negative people around you always complaining about whats not right in their lives or judging your every move. Their attitude eventually will rub off on you and can effect how you respond to certain situations. I’ve learned over the years that I have to keep positive and like-minded individuals around me. I have the type of personality that if someone is negative, I pick up those vibes and my entire demeanor changes. I make sure to surround myself with spiritually strong individuals as well. This factor makes a HUGE difference in your spiritual growth and your relationships. Practicing meditation, daily devotionals, spiritual guidance are all healthy ways to improve spirituality. I always have to take time for myself to think about everything that has occured and to get my thought together. I’ve experienced depression, self-consciousness, among other things. IT IS NOT FUN!!! When my mind starts to become overwhelmed and thoughts began to race, I literally have to stop what I am doing and get it together. If not, it shows up in my appearance, my attitude, my body language and more. Sometimes things do become too hard to handle and I just end up in a funk, we all do. I’ve learned to pay attention and catch those actions early so it won’t come out in my work or anything else. I am still a work in progress, and I know God is constantly working on me and building me.
Well everyone, I have much to catch you guys up on. This past week has been one very trying and eye opening week. On Wednesday, March 12, 2014, I was experiencing shortness of breath along with chest and back pain on my left side. Over the last 10 years since I’ve been living with Lupus, I have always experienced shortness of breath during the winter months due to my lungs being inflamed. This was the first time I’ve experienced chest pain with it, so you know I was scared. More like terrified because I thought I was having a heart attack. Went into the emergency room that night and things became even more terrifying. The doctors all thought it could be possible that there was a blood clot somewhere in my body causing my joints to swell and fever to rise. Thank God blood clots and heart attack were ruled out. Lupus caused my heart and the muscles around it to become inflamed (reason for chest pain). Also found out there were signs of pneumonia-like symptoms and it caused fluid to build up around the lower left side of my lungs and heart. Along with all that, the doctors also found swollen lymph noids under both arms and down the center of my chest that played apart in the shortness of breath as well. This week I will have a biopsy done on those lymph noids to make sure they are not cancer ( I already know it’s not cancer). As you can see, the last three days for me has been very challenging as well as an eye opener. I really thought this was it for me, I’d never experienced anything like it before. Even with all this going on, I still continued to stay calm and keep a smile on my face for the most part. Now I know that there is a major plan for my life. There has been many attempts to take me out, and none of them were successful. I have a story to tell, and it will be shared. I will be spending this next week healing myself and getting back on my feet. I ask that you all continue to pray for me and I will do the same for you. Take care of yourselves and please pay attention to the signs your body sends you. I hope this inspires someone to continue to fight. I refuse to give up. This was only a test, and I aced it.
I love when I discover new food ideas
One of the main reasons why Lupus is so mysterious and challenging to live with, is due to the fact I never know when I am going to experience a flair. I can go days, weeks, even months without having any symptoms from Lupus. Outside of the occasional fatigue, I never know when I am going to have a bad day. I can be just fine for weeks at a time, then here comes Lupus. Knocking me to my A@%!! My flairs range from as mild as a skin rash to swollen joints and inflamed organs. One episode happened in 2005 when I was hospitalized for almost two months for lung infection and bacteria on my lungs. I left that hospital about 30 pounds heavier and with a pick line in my arm. This was probably the scariest moment in my life, I didn’t know what was going on. There would be times throughout the day that i would not be able to breath. All I could do was cry and just wait for it to pass. I was on tons of steroids and other medications, and would constantly have random outbreaks on various parts of my body. It would be so weird to sit and watch my lip swell like the Nutty Professor (I can joke about it now, then not so much ha). The most recent episode happened in September 2013. I was going through my regular day of work and school, but that night ended up driving myself to the emergency room to find out my gallbladder needed to be removed. I was doing just fine that day, having no pain and with plenty of energy. I’ve had small masses to appear on my kidneys and my liver, along with a host of other issues. It’s crazy how Lupus works and the many effects it has on different individuals. Thankfully I have never been on dialysis or had any organ/tissue replacement. I’ve learned to be aware of my stress levels and the amount of work I put on myself (still learning to pace myself) because stress is a main contributor to Lupus flairs. There were semesters I would have to sit out because I would be too sick to attend classes. Working and being a full-time student took its tole on me sometimes but I never wanted to give up (Graduation coming soon….YAY). Over the years I have come to realize that I can’t fight my body. When it tells me to rest, I sit my butt down. I’ve learned when I am doing too much and need to take a break, my body will reward me graciously for it. I know the winter months are the worst for me, that’s when I take extra precautions. I have no problem with taking a nap in the middle of the day, or telling someone I can’t hang out with them because my body told me to rest. I know my limits (sometimes). I KNOW ME, this journey has taught me a lot about myself.
It’s amazing how so many individuals know nothing about Lupus but it runs high in the African American community. Women of color are three times more likely to be diagnosed with lupus between the ages of 12-25. As many as 1 in 250 young black women will get the disease. Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with and a challenge to treat. Lupus has a range of symptoms, strikes without warning, and has no known cause or known cure. Its health effects can range from a skin rash to a heart attack. Many individuals go years without being diagnosed because the illness can mock other diseases and go undetected for long periods of time. For myself, it took about three-five months before the doctors knew that it was lupus. This disease is also very complex because there is no concrete answer of where it actually comes from. Lupus is a disease that can affect many parts of the body. Everyone reacts differently. One person with lupus may have swollen knees and fever. Another person may be tired all the time or have kidney trouble. There is no way to prevent Lupus, but there are ways to help control the symptoms. Remove any and all processed foods. Foods high in sodium, starch, sugar, salt, also trigger a flair for those with lupus. African Americans are prone to many other diseases, that’s why we need to become more educated about our bodies and how foods and our environment affects us.