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Explaining Your Chronic Illness To Family

Explaining your chronic illness to family can be a good or challenging experience. Some will understand what you’re going through, and some will not.

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Explaining Lupus To Family

Explaining your chronic illness to family can be a good or challenging experience. There will be some who will totally understand what you’re going through, and unfortunately some who will not.

Yesterday,  I had some family over visiting. After spending some time in the house, we decided to go outside and let my cousin and nephew play. I wasn’t feeling too well but I didn’t want it to stop me from spending some time with family.

After about 20 minutes outside, I started to feel tired. I had called my brother, who was inside, to switch places with me to watch the kids. A family member said to me, “just sit on the step”. I told them I really didn’t want to. The sun was becoming too much on my body and I really needed to come inside. They proceeded to say to me, “oh, so you can’t be outside”. And I kindly let them know that I am sensitive to the sun and if I stay outside any longer, the way I feel now will increase. They were not mean but I definitely felt their intense curiosity.

When explaining my autoimmune disease to family and friends, it is always a touchy situation. I know they mean well, but I don’t know how they will respond. We are all in our 20s and 30s, but I can not do all the lively stuff that they can do.

I am always willing to educate them on my illness and experience. For instance, yesterday I was explaining to them my gastro issues. One my family member’s thought my mixed connective tissue disease was in remission because I now have a new medical issue. I kindly explained to them that my autoimmune disease can be a precursor to developing other illnesses. The illness attacks your organs. So any complications I have, for instance, my gastro problems, could be a direct result of the mixed connective tissue disease.

I let them know that mixed connective tissue disease is a chronic disease, symptoms generally come and go, and it is unpredictable. You can ask me to go out with you early in the day and by the time night comes, I could be tired. For this reason, I know many will not understand. Sometimes, not even family. Thankfully, I have supportive people around me, especially my father who helps me explain to others some of the symptoms I may be feeling.

I never want to be burden or divulge too much information as if I’m complaining. Sometimes, I simply want others to understand I suffer from a chronic illness. Some days will be good, some days will be bad, but the main thing for me is that I’m still living.

 


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Chenelle Covin is the Editor-in-Chief of the award winning online magazine, Unheard Voices.

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Chenelle’s Chronic Life: Getting healthier and losing weight, one smoothie at a time

In a previous post, I talked about how through medications I have gained a lot of weight. Now I’m making a plan to lose the weight, one smoothie at at time.

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Living With Lupus : Getting Healthier and Losing Weight, One Smoothie At A Time

In a previous post, I talked about how through medications I have gained a lot of weight.

Throughout my entire life, I have always struggled with my weight. My weight problems are genetic.  My father’s side of family has always been on the heavier side. On my mother’s immediate side of the family, no one was obese.

My mother struggled with her weight in her later years because of the long-term prednisone use, but she never had weight issues in her younger years.

My father always struggled with weight his entire life. He would tell me stories about his weight going up and down throughout his life. Before I started my weight loss journey, my father had lost 100 pounds by simply changing his eating habits and exercising. It inspired me to finally get all the weight off that I wanted. About two years ago, I started my weight loss journey and by the end of 2015, I had lost 60 pounds. In January 2016, my doctor, wanting to treat my energy levels, put me on an anti-anxiety medication to give me more energy. I never really been a person to look at the side effects, only the serious ones. Unfortunately, even though my doctor knew my weight loss journey, prescribed me this medication without the warning that it can make you gain weight. It was also my fault for not looking.

The medicine started making me feel absolutely better, but within one month’s time, I started to realize I was gaining weight.

At first, I thought it was because I had slipped off the gym a little being consumed with grad school and I had recently got into a relationship. I started to pick up the pace again in the gym. I didn’t gain but I didn’t lose either. After several months went by and increased visits to the doctor’s because of my sinuses, the weight kept creeping on. My doctor seemingly forgot that I had lost 60 pounds and said to me “so what are we going to do about the weight”. I was frustrated because I was doing everything I could. At that point it had been two years since I’ve had red meat or pork. I do not drink soda and when I want a taste of juice, I get a bottle of water with a juice packet (those 5 calorie packets). I don’t eat bread and when I rarely do, it’s whole grain. I was exercising two-three times a week and I looked at him with anger when he said “so what are we going to do”. The things I told him, I felt were going in one ear and out the other. I knew in the back of his mind that I was eating chitlins, pasta, and fried foods everyday. I just walked out the doctor’s office and said I’m just going to go harder.

Shortly after in August 2016, I had a routine upper endoscopy and colonoscopy. Days after the procedure, I started to feel an unbearable pain in my stomach. The doctor said that it was relatively normal to feel the pain a few days after the procedure, but the pain started to persist well after a week. By the time September came, I feel into a deep depression.

From the pain in my stomach and a recent doctor’s visit, I realized I gained most of my weight back. I went back to the primary doctor and I literally started crying in the office. I said to him, I am doing everything and my weight keeps going up and up. I had literally gained 7 pounds in one week while exercising!

Though there are many challenges with lupus, one year after my diagnosis, I had my weight under control. The next year, it was all back on. The doctor seen my frustration, looked at my medications I was taking, and said “oh yes, this medicine can make you gain weight”. He put his head down. He immediately took me off the medication and I lost 15 pounds by the end of 2016.

And well after that, it has been a stand still. With the constant pain in my stomach and being on prednisone more than 4 times this year, it has been rough to get the weight off. I felt like I was at my last end and was just going to give up.

After speaking with several health and fitness professionals, I started to try the smoothie route. I make my own homemade smoothies, no self-made products. I am trying to drink a smoothie for breakfast and then gradually move to  breakfast and lunch, and for my dinner a chicken or fish meal with vegetables. The ingredients I put in my smoothie are:

  • ginger
  • cherries
  • raspberries
  • strawberries
  • almond milk
  • and a hint of honey

Over the years, my weight has always been a challenge. Although I was athletic as a child, I still was never the “skinny” girl. Throughout the years,  I’ve always seemed to manage when my weight got too much out of hand. I will honestly say as I’m typing this today, I am the biggest I have ever been. It has become depressing and a challenge. But I know I got this, one smoothie at a time. This week I have already lost 5 pounds.

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Lupus and Gastro Problems

Lupus can affect any major organ in your body from your heart, kidneys, lungs, joints, nerves, to your stomach. Here is my gastro story.

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Lupus and Gastro Problems

When I tell people I have mixed connective tissue disease with major symptoms of lupus, many people ask me if it affects my kidneys. Systemic lupus erythematosus (SLE) that affects the kidneys is called lupus nephritisLupus nephritis causes inflammation (swelling or scarring) of the small blood vessels that filter wastes in your kidney (glomeruli) and sometimes the kidneys, by attacking them like they would attack a disease. I do not have lupus nephritis.

To date, I have not had any issues with my kidneys. Lupus can affect any major organ in your body from your heart, lungs, kidneys, brain, joints, nerves, to stomach. The main issues I have had over the years are my lungs and stomach.

For the past two years, I’ve had major issues with my stomach. It began in 2015 when I started to constantly feel nauseous, constipated, and had bloof in my stool that put me in the emergency room. I would take Mirlax for a week and it would work. Once I stopped taking the Mirlax for a few days, the constipation would return. The emergency room doctor told me I needed to see a gastroenterologist. I went to the gastro and had a EGK/colonoscopy. Relatively, everything came back fine. He said I needed to take more fiber and would need to get another follow up upper endoscopy and colonoscopy a year later. I didn’t like the way the doctor handled things with the follow up appointments so I sought out a new doctor. The new doctor wanted me to have another (upper endoscopy which is a scope that looks into your stomach) and a colonoscopy. Before I was 30 years old, I was having these multiple procedures but I remained steadfast.

When I went to the new doctor, I had lost over 60 pounds and continuously losing. I had gotten to the point where I finally learned how to manage my weight while having a chronic illness. After having the colonoscopy, my stomach was in extreme amount of pain. The doctor told me it was common to be in this pain for a few days. He stated they had to push on my stomach because of the numerous air pockets. But after a couple of days, the pain didn’t subside. It intensified. I immediately called the gastro to make an appointment. I told him what was going on and immediately he said “pushing on my stomach could have not caused my ongoing issue”. He may be right. However, he had no answer but to send me for a CT scan.  After the CT scan came back with nothing, he ordered me a pill cam study. The pill cam goes deeper into the stomach to see if there is any underlying issues beyond what you can see in the endoscopy. There he found an ulcer. Now, we have an answer. Well, sort of.

As I am typing this today, I am now being referred to get a balloon procedure to take a piece of the ulcer to see if it’s bacteria. Some days I don’t feel as bad because I’m on a pain medicine. When I get an infection, like sinus, upper resp, or stomach virus, the pain intensifies even with the pain medicine.

I hope one day I get the answers I’m looking for. I will keep you updated on my progress on my stomach. How does my stomach feel today? In pain, which compelled me to write this blog post. I don’t see too many posts on gastro problems associated with lupus. For that reason, I wanted to share my journey and how I’ve been managing it.


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#Unfiltered : My Real Thoughts On Dating While Having a Chronic Illness

Last year I wrote a piece about what it’s like to date while you have a chronic illness like Lupus. Here are my thoughts unfiltered.

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Last year I wrote a piece that was featured on The Huffington Post Health Blog about what it’s like to date while you have a chronic illness like lupus. I modified it some and re-posted it here as addition to my new blog. After the article was published I’ve had people ask me to write a part 2. I said to myself, what is a part 2? In my post, I wanted to capture what it’s like to date while you have a chronic illness. I thought I did. But as I read back on my article, I noticed that I kept a lot of parts out. I minced my words and sugarcoated my thoughts in fear that people I have dated or attempted to talk to would feel some type of way about my post. Additionally, I was also writing for outlets such as Unheard Voices, Huffington Post, and Medium, so I knew the angle had to be different. But for here, on my personal blog, I’m going to share with you my true feelings.

So what is it like to date when you have a chronic illness like lupus? SCARED AS HELL. Let me paint the picture for you. I’m 31 years old, single, with no kids. I will soon be finishing my masters in corporate and public communications with plans to obtain a PhD. I have found success in the media field running an online magazine, web development, and public relations but I am still looking for total fulfillment. It is never a dull moment for a Scorpio like myself. We want it all, and that all also means for me spending the rest of my life with my best friend, building the dream and a family.

So where does the actual fear come in? I think I’ve always had this fear. As a young child I was groomed to believe I was ugly because of my dark skin. I was never chosen by the boys in my school. An unfortunate story you’d might hear a young girl dwell about. The story of never feeling good enough. It was sort of like a twilight zone for me, because the adults in my life saw me as a pretty “chocolate girl”. I was asked to model and audition for television bits. I remember overhearing my mother talking to a friend of hers that I would never have a problem finding someone because I was beautiful and intelligent. My mother never knew my struggle to find acceptance with my peers until she one day heard a boy talk about me. That was my fear. My fear was, would I be able to overcome the mental anguish that was instilled in me since I was a kid? The answer to that is yes, but gradually. I have been able to learn how to overcome those struggles and to accept me for who I am.

As I got older and started to date, I realized that people had ALL types of preferences.  I’ve learned in life that I will be someone’s preference and well, I won’t be either. In March of 2014, after being diagnosed, a new fear overcame me. It took until my late 20’s to start learning how to really love my skin color and my weight that fluctuated. Now I had to deal with a chronic illness.

Dating wasn’t the first thing on my mind when I was diagnosed. I was thinking about getting better. But as I was getting better, the dating aspect started to fluster my mind A LOT. I wasn’t blessed like my parents. My parents knew each other since they were kids. They started dating in high school and got married several years after finishing college. My mother, who also had lupus, was blessed to have a man (my father) who cared unconditionally for her. He was faced with her lupus head on when he was only 20 years old. Instead of running away, he stayed with her, married her, until she parted this life in death at 41 years young. I often wish that I would have met someone in high school or even college like my parents, but I know everyone’s story is different.

As the time goes by, I often wonder if I’ll ever find my best friend, my equal. Dating while you have a chronic illness can be hard. Not only because of the pains you may have that may limit you from doing certain things, but you have also have to worry about attitudes. Not everyone is going to be receptive. Not everyone is going to be understanding. And yes, unfortunately some people are extremely shallow.

Most times I don’t tell anyone I’m dating about my illness until I know it’s getting serious. I definitely don’t tell anyone on the first date. One time I had to cancel a date twice which prompted me to tell them I had lupus. I knew that piece of information could be trusted with them. And yeah, they were very receptive to me telling them. No, it didn’t work out between us. I have my various reasons why it didn’t. While I never want to make them feel guilty, the thought of them being scared of my illness always played in my mind. I always think about what goes through the other person’s head. “Will she always be sick to the point she won’t be able to do anything?” “I don’t want to have to care for someone for the rest of my life.”, “Will she hinder the way I want to live my life?”

The most important thing I want people to see while dating me is I’m human. I am loving, caring, understanding, among other things, and will give you a 110% of me as I expect the same. One thing I never want to feel is a burden to someone because I have a chronic illness. Before being diagnosed with lupus, I would often hear that I was a special person and that only a special person could be blessed to have me. I used to laugh at those statements, but now I wholeheartedly understand what they meant as it resonates so much today.

For those who have a chronic illness and are dating, go with pride. Do not be afraid to test the limits. Always have a positive attitude. Like I said at the end of my first post, always make sure you have fun. The right person will gravitate towards you. I always say lupus doesn’t have me, I have lupus. Because at the end of the day, you’re still a person just like anyone else with needs, wants, and a desire to love.And just like lupus, dating life will have its ups and downs.

Yes there are days that I’m scared but I know one day it will all make sense.


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