I know I have been MIA from my blog for over a year and half, Lol. Someone tell me why me doing a blog was a good idea, Lol? I am learning not to set unrealistic expectations while living with chronic illness.
God laid on my heart to do a devotional time with warriors that are going through the daily struggles. The devotional is written by warrior Leslie McKee on how to turn your pain into purpose. If you would like to join me and other warriors starting October 3,2022, for a 7-day devotional, click the link below.
Finding Hope in Psalms for Living With Chronic Pain and Illness, with me?
Disclaimer: Disclaimer: Although I am a former healthcare professional, I am not giving medical advice. This website is for informational and educational purposes only from my personal experiences, does not constitute medical advice, and does not establish any kind of I am not liable or responsible for any damages resulting from or related to your use of this information.
As we know our treatment options for Lupus are slim and finally having an approved treatment is awesome. This is my 3rd go-round with Benlysta and I feel by far the Benlysta autoinjector is better for me VS the infusion.
Here are the pros and cons of Benlysta Infusion:
Pros
Cons
It only once a month
The infusion took me 2-3 hours
In a control setting if you’ve reactions
Very expensive cost my $17K -$20k and I was stuck with a 20% coinsurance
Flares worse for my week off and 3rd week before injection
Benlysta AutoInjector –Weekly
Pros
Cons
Don’t have lag flare feeling
Having to stick yourself
Cost is way cheaper for me than infusion. Cost me $8 a month for 4 injections
Please check out my YouTube video where I go into more details.
Flares or “flare-ups” are a classic sign of an autoimmune condition. Flares are the sudden and severe onset of symptoms which can include redness, heat, pain, or swelling.
My medical diagnosis: Systemic Lupus Erythematosus,Sjogren’s, Raynaud’s, Testing for Polymyositis, Possible MCTD, and Ankylosing Spondylitis
My flares consist of extreme fatigue, joint pain, scalp Folliculitis, flu-like symptoms, & difficulty walking. Every warrior struggles with different symptoms depending on their conditions. When I first was diagnosed this was a struggle to give in to the flares if that makes any sense, I was forced to no longer be able to work and I found myself being stuck in bed for a minimum of 12 hours a day with what I thought was no hope in sight. After doing more and more research on how to better handle the flares I learned for me that my triggers were:
😢Stress 😢Certain Foods 😢Lack of sleep
So let me break it down to how I had to make changes in these areas because it depended on my life.
Stress: I was stressing myself out because I felt I needed to try to work and maintain the way I used to be. I continued to not listen to my physicians or my now husband about continuing to work a 9-to-5 that was very stressful and I kept getting sicker and sicker. I learned to finally surrender to God and know that he would take care of me no matter what it was not an easy journey. I also had to let go of certain people IE. family and certain so-called friends because I learned if you’re not making positive deposits in my life and only withdrawals that were draining me and killing me you had to go PERIOD!
Foods: Now let me be a very honest I have the worst sweet tooth ever I could sit and eat 10 boxes of Mike and Ike‘s in one sitting, DON’T JUDGE ME lol. I know that when I consumed a lot of sugar or processed foods my flares were so much worse, I’m speaking for myself I know others are very healthy eaters and still experience severe flares that is not what I’m saying. I felt when I consumed healthy foods that my flares didn’t last as long.
Sleep: When I first was diagnosed going through all of the treatments, the side effects from the medications, and the pain I was only getting maybe two hours of sleep at night. Trying to explain that to family members they would make comments like “maybe you shouldn’t sleep during the day then you can sleep at night”. Well, I’m here to tell you when you don’t listen to your body and sleep during the day then you are likely to be awake for 24 hours. It wasn’t until I started taking medical marijuana(post coming )that I was able to get a true night’s sleep and turning my phone off an hour before bed (still a work in progress), this helped me stop consuming so much negativity from social media and the news.
For many of us with chronic illness, we rely on help from our spouse/partner, family, or friends to help us with day-to-day living and tasks. So my caregiver is my husband who is also the caregiver for his adult daughter that has Cerebral Palsy. For the most part, he’s healthy other than high blood pressure and he didn’t have his first surgery until 2018. But today I sit here in my car because of COVID-19 as he is having meniscus surgery. I can’t help but think what does this mean for my health? The selfish thought is a little bit stressful OK a LOT STRESSFUL. My husband is an amazing husband & caregiver he makes sure I get the necessary rest that I need, he run errands, grocery shops, wash clothes,& clean. So many take for these things that I take for granted, yes I do help with our household chores when I’m able but now that he will be down for six weeks it all falls on me from caring for him, caring for myself, and my bonus daughter. This is overwhelming because I don’t wanna get stuck in a flare because of the extra responsibilities that I have to face.
From a marriage/ serious dating standpoint you fall in love and marry someone for sickness and in health and they’re stricken with a chronic illness you at first are like I got you no matter what because we’re going have a “future” together. This is what society says you should do stay because those are the vows right; here is where the CONFLICT comes into place and the caregiver as a person gets lost and burned out. Here are some reasons :
The stress of you not being able to do daily activities such as bathing, dressing, household stuff like normal.
You lose your job because of their illness now you’ve added financial stress (the disability process is a nightmare that takes 1-3 years.
If you’ve children now that responsibility falls on that partner to care for them and get them around to activities.
Now your partner will hold in most of this stress because they know they can’t stress you out with this burden. WHO HELPS THE CAREGIVER? When you take that vow before God it doesn’t mean you aren’t human, stress takes a major toll in a relationship it causes arguments, resentment, guilt, health issues for the caregiver who will likely neglect their health to care for you. I watch my father be my mother caregiver and he was an amazing provider but it took a toll on him big time juggling himself, two kids, a sick wife, and pastoring two churches. I saw the disconnect it brought in their 20+ year marriage because he was worn out.
Today I see how much my husband does for me at this moment sitting in this car and I’m grateful but to be honest I don’t know who and why he loves me at times. All those scenarios above that were all my baggage that he chose to stay around for. So know just because you have an amazing partner/spouse they’re are struggling to balance your chronic illness, your relationship, and their mental health. So for the most part it’s hard to find that balance because you can’t give 100% of yourself to being a caregiver a partner, or parent because no matter how great your partner is something will fall short. Your partner is only giving 33.3% if you face just those three but if we add the other factors its even less. This post is not to say your spouse/partner doesn’t love you or isn’t capable to juggle a sick partner its just the reality of the struggles our partners face.
Here are my tips on how to get through caregiver illness/surgery:
Plan meals out for the week
Grocery pickup
Create a daily chore chart so you don’t overdo it.
Tell others NO!
ASK FOR HELP if possible from other family members, friends, or church family.
God allows us grace so know that if you can’t do it all it’s ok tomorrow is a new day.
Ephesians 4:7 But unto every one of us is given grace according to the measure of the gift of Christ.
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Over the years I’ve had several bouts of 𝐝𝐞𝐩𝐫𝐞𝐬𝐬𝐢𝐨𝐧 and now I feel I’m starting to have anxiety as I’m facing more health challenges. I have gone to therapy in the past but I’ve never stayed consistent at it because there’s always the 𝒔𝒕𝒊𝒈𝒎𝒂 𝒊𝒏 𝒃𝒍𝒂𝒄𝒌 𝒄𝒐𝒎𝒎𝒖𝒏𝒊𝒕𝒊𝒆𝒔 when it comes to your mental health but after going a few sessions I felt I could better handle that myself with prayer but I feel now everything is snowballing and getting bigger and bigger to where it is truly overwhelming. Dealing with past 𝐦𝐨𝐥𝐞𝐬𝐭𝐚𝐭𝐢𝐨𝐧 as a child, 𝐥𝐨𝐬𝐢𝐧𝐠 𝐦𝐲 𝐩𝐚𝐫𝐞𝐧𝐭𝐬 three years apart in my twenties, being 𝐝𝐢𝐯𝐨𝐫𝐜𝐞𝐝 twice, 𝐜𝐨-𝐩𝐚𝐫𝐞𝐧𝐭𝐢𝐧𝐠 with a child in a different state, a new marriage which is wonderful but still something to add to some stress, raising a special needs to a stepchild, losing my career due to lupus, and having multiple chronic illnesses.
Man after I typed all of that I’m so thankful I’m not in a mental institution. I had to grow up fast because my mother suffered from chronic illness and I started being a 𝐜𝐚𝐫𝐞𝐠𝐢𝐯𝐞𝐫 at a young age and a new part of my childhood was taken because of her illness and I used to always think I never want my child to have to go through what I went through having a sick mother, but the tables were turned and I struggle with the same things from my childhood with my son. When I was diagnosed officially my son was 13 but I started getting sick when he was 11 and trying to explain to a child that after you work a 40 hour week you literally have no energy to do anything was so difficult. I still have moments where 𝐈 𝐟𝐞𝐞𝐥 𝐠𝐮𝐢𝐥𝐭𝐲 for being sick my son is now 19 and he understands it now but I knew it took a toll on him. I know so many of us have suffered from depression because the life you knew has completely changed because of this illness and it feels like you’re 𝐥𝐨𝐬𝐢𝐧𝐠 𝐞𝐯𝐞𝐫𝐲𝐭𝐡𝐢𝐧𝐠 around you whether it’s the ability to complete daily tasks, bath ourselves, or work. This life is not an easy one but I know with prayer things will get better but to use the wisdom that God gave me I think it’s 𝐭𝐢𝐦𝐞 𝐟𝐨𝐫 𝐦𝐞 𝐭𝐨 𝐦𝐚𝐤𝐞 𝐭𝐡𝐚𝐭 𝐜𝐚𝐥𝐥 to get additional help that I need.
SAMHSA’s National Helpline is a free, confidential, 24/7, 365-day-a-year treatment referral and information service (in English and Spanish) for individuals and families facing mental and/or substance use disorders.
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Let me start by saying I had a career in the medical field for 15 years in the clinical aspect and I knew of Lupus but not the exact causes or symptoms only briefly in school knowing that it was a chronic illness. Let’s start with the definition of Lupus -Lupus is a chronic (long-term) disease that can cause inflammation and pain in any part of your body. It’s an autoimmune disease, which means that your immune system — the body system that usually fights infections — attacks healthy tissue instead.
Cutaneous lupus, a form of lupus that is limited to the skin
Drug-induced lupus, a lupus-like disease caused by certain prescription drugs
Neonatal lupus, a rare condition that affects infants of women who have lupus
Today let’s talk all things systemic lupus (SLE)and I will cover the other types and a future blog post. This is the type of lupus that I have which is one of the most common types of lupus to have for those of you that don’t know lupus diagnosis is higher in People of Color. Please know there is a lot of steps and testing that go into getting an autoimmune diagnosis that will also be covered in a later blog. So let me give you my backstory to my lupus diagnosis:
💜As a child, I had a lot of urinary tract infections that were unexplained getting 3 to 4 of them every month and it persisted into adulthood
💜When I had was 17 they thought I had multiple sclerosis due to extreme right-sided weakness and being unable to walk which I still have the same weakness as of today.
💜Being diagnosed with endometriosis in my 20s, having miscarriages, and tons of female surgeries with the worst recovery hysterectomy by 25 but I still just thought that was a normal thing related to my endometriosis.
💜I have never been an outdoor girl but when I would go outside I would get flu-like symptoms and just be extremely fatigued but I would just chalk it up to the southern heat of living in Alabama and Florida.
💜In 2011 I herniated a disc in my back somehow I was on the toilet and could barely get up I thought the pain would go away but it only got worse so I then got an MRI which said I have a herniated disc I tried everything not to have surgery physical therapy, exercise, & pain management with no success.
💜January 2012 I became extremely sick for two days not being able to eat everything made me sick to my stomach and then I thought I just had a random UTI my doctor called me in anabiotic‘s which I always have to take I am mediately started vomiting it just nothing was staying down I went to the emergency room and they informed me I was in kidney failure we’re not talking just so you have a little vomiting that you’re dehydrated kidney failure were talking creatinine over 4.7 Which is common for someone that is currently doing dialysis That was the scariest news of my life at that time I was a single mom and could not imagine being hooked up to a dialysis machine not being able to work or let alone die, I spent a week in the hospital after a battery of test they couldn’t figure it out they wanted to do a kidney biopsy but they decided to discharge me instead.
💜July 2012 I underwent a Microdiscectomy at Right L5-S1 and herniated after three days.
💜November 2012 had to undergo a Posterior Lumbar Interbody Fusion (PLIF) for re-herniation this is where they put a cage and screws in my spine.
💜 Immediately after surgery, I went into adrenal insufficiency
and the doctors came in trying to figure out why my quarters all levels were nothing but yet no one connected the dots.
💜After going through weeks of physical therapy back-and-forth to pain management after the fusion on my back my pain was not being controlled my muscle tones started to decrease and I was extremely weak in my lower extremities so at that point my pain management said we need to check you for autoimmune-related disease because you should be better by now.
So that’s my journey of everything that I had to go through just to get to the systemic lupus diagnosis. I know I’m not alone because so many of you have gone down the same road of knowing something wasn’t right but thinking that it was contributed to a different element and not looking at all your symptoms as a whole. So in another blog post, I will go more in-depth about lupus symptoms, diagnostic testing, and how you can better get your doctors to not blow you off.
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*Disclaimer I hated English in school so if you find grammatical errors I’m sorry in advance. With that out-of-the-way welcome chronic illness warriors! Why did I decide to start a blog you might ask? I started this blog to educate, raise awareness of different autoimmune diseases, and to tell the good, bad, and ugly of living with an invisible disease. I start at my platform on YouTube just giving little educational tidbits here and there and daily living with chronic illness videos. Then I incorporated Instagram to that equation but I really did not provide a lot of educational content only to say I have a new video up on my channel. I feel when you have the platform to influence others it should be meaningful and provide some type of substance. So I decided to re-brand how my Instagram moves forward but also find ways to share my personal story and health issues to help someone else that may be going through the same thing. My goal is to put out 1-2 blog posts per month on specific topics dealing with chronic illness. I hope you find my blog helpful and know that I am always here if you have a question.
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smilesbehindlupus.com 