Tag Archives: msdiagnosis

YOU Matter

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Have you ever been to the doctor and felt rushed throughout the whole process? You waited for close to 30 minutes to be seen, only to walk out of the doctor’s office more confused than you were when you first walked through the doors. Or even worst, you received devastating news from the doctor with very little comfort or hope for the future. Doctors are sworn under an oath to provide the best medical care to their patients but it seems that as time progresses the oath isn’t held in high esteem.

In today’s society, empathy and compassion are two emotions that we seem to lack. This isn’t me pointing the finger at anyone in particular, because I believe that we could all work on the dynamic duo. Everyone is so concerned about, “what’s in it for me?”, that we forget the basics of human decency. Like the famous saying that many of us have heard since we were children, “Do unto others, as you would like to be done unto you.” Well, how can we do that if we aren’t feeling at all? Society also teaches us that when feeling becomes too emotionally draining, it’s okay to turn it off. Again, I am guilty here as well. I have turned off my feelings more than I would like to admit as a defense mechanism to protect myself from the emotional highs and lows of life. But is that really what life’s about? Not feeling, just existing? Once you stop feeling for others and yourself, it begins to affect your character or lack thereof. You may be wondering where I’m going with this, but I’ll get to my point…eventually.

Recently, I took a class on LinkedIn Learning titled, “How to Speak So That People Will Listen”. I learned that to be a good speaker, you must first master the art of listening. Oxymoron, right? If you’re the speaker, why do you need to listen? You’re the person with all the knowledge and understanding on the particular subject, why would you need to listen to your audience? Well it is simple, how would you know what people wanted to hear or learn if you don’t ask them about their concerns? Without listening and understanding where the audience is lacking, the speaker then assumes what the audience wants to hear and projects their biased feelings onto them. In some instances, there are times when the speaker has to just teach the material, but for the doctor and patient relationship, this is not the case.

Listening requires empathy and compassion. To actively listen, it requires your undivided attention. Wow!! Undivided attention, in today’s world where everyone is accustom to multi-tasking!! We cook and talk on the phone, play with our children and answer emails for work, exercise and listen to music, watch TV and browse the internet, etc. Yeah, that stepped on all ten of my toes and all ten of my fingers, too. Multi-tasking has its’ benefits, but it probably isn’t the best choice to make while listening to someone. Especially someone that needs your attention; more specifically, someone that’s paying for it.

I remember when I was a child, my doctor wasn’t just my doctor, but more like a family member. When it was my time to be seen, my parents and I had his undivided attention. However, I’ve felt the opposite in my adult years. From the time leading up to my MS diagnosis until now, I can count on one hand and remember the doctors by name that actually listened to my thoughts, feelings, and concerns. Either they were playing God and predicting my future of being wheelchair bound and severely disabled, pushing medications on me, or telling me how I feel. For example, shortly after having my daughter, I started taking an MS medication. I will not be disclosing the name of the medication because what didn’t work for me, may be a perfect fit for you and I would never want to discourage anyone from getting the proper care. Three months into taking the medication, I didn’t feel like myself. I am an upbeat person by nature, but when taking this medicine, I became so depressed to the point that I struggled to get out of bed. I didn’t want to shop or do any of the things that I normally enjoyed doing. I was confused and very forgetful of things that I typically remember. I contacted my Neurologist (at the time) to inform him that I believed the medication was altering my personality. I received a call back from his nurse practitioner and she informed me “that wasn’t a side effect of the medication”. She didn’t explain to me that everyone’s body is different or even attempt to come up with a better solution. She just flat out said, “that’s not a side effect of the medication.” Long story short, I started to do research on the medicine and read forums online, where I saw many comments from people who were having similar issues. I also, was very fortunate to connect with someone who was taking the same medication, and experiencing the similar symptoms. Now, I’m not fortunate that this individual was going through a rough time, but our pain brought us together where we didn’t feel so alone. 

At the end, I switched Neurologist and discontinued the medication. My associate discontinued the medication as well. I’ve learned so much since my MS diagnosis, but what I’ve learned from this particular chapter was “sometimes when you want to expose the truth, it requires some digging.” Do the research and reach out to people. Keep a notebook to date and log your symptoms. Write down all your questions/concerns, and present them to the doctor. Don’t back down. Ever!! You’re not just a number, YOU MATTER!! Data and statistics are important, but YOUR individual needs MATTER. If your doctor doesn’t realize that and wants to fit you into a category, find another doctor because there’s a doctor out there for you. Peace and Blessings to you all.

Happy New Year!! Let’s make this year one to go down in the books.

Sunshine in the midst of the rain

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As a little girl, I remember playing outside, here, in the South, and out of nowhere it would begin pouring rain. Like seriously, out of nowhere! The sun would be shining so bright in the pretty blue sky, and then here comes the rain “raining on my parade”. My cousins, siblings, and I would be in the middle of a competitive soft ball game, so we’d pause our game and run to Grandmas porch to seek shelter until the rain “blew over”. It would rain for about 30 minutes/ an hour max, and then we’d start playing again like we never stopped. Even though the ground was wet, the game seemed better. The rain came and cooled the temperature down, we had a chance to rest and drink water, and the air smelled fresher.

This explains my feelings about my MS diagnosis. In the beginning, it was hard to come to terms with it because I didn’t understand how to approach it. I tried to resume “life as normal”, but I was so unsure about Life. I felt like MS had definitely “rained on my parade”. For the first time, I didn’t feel confident in the plans that I had for my Life.

Truth be told, my idea of “normal” was long gone. I would need to make some significant changes. Shortly after being released from the hospital, I started reviewing MS treatments, and my doctor and I decided that the pill, Gilenya, would be the best option for me. I took all the necessary tests, received brochures on the medication, and then a week before starting the medication, I felt a little off, so I took a pregnancy test. Much to my surprise, I was INDEED pregnant. I had missed my menstrual cycle after I stopped taking the birth control while I was in the hospital, but it wasn’t uncommon. My cycles were very irregular since my teenage years.

In my early 20s, I missed my menstrual cycle for almost a year, so I scheduled an appointment with my OBGYN. He ran many tests and I even had an ultrasound done to see if I had a blockage; but all tests came back normal. He came to the conclusion that my brain wasn’t sending signals to my ovaries to have a monthly cycle. He also said that it wasn’t uncommon and when I was ready to have children, all I would need to do was let him know and he could give me some medication to help with conceiving. I, later, identified that my irregular menstrual cycles was an MS symptom.

So here I was: newly engaged in April, diagnosed with MS in May, and then pregnant two months later without any medication to trigger conception. I definitely felt that God had a sense of humor. Especially when I realized that I received a prophesy in June 2017 that something was going to show up in my urine. I was told, “You’re going to call your older sister and say, Guess, what happened to me?” Well the first person that I thought of when I saw those two pink lines was in fact, my older sister!! She was the first person to hear the news, hear my excitement, and the first person to console me because I just couldn’t believe what I had just found out.

I felt so many emotions. I was excited about becoming a Mom, yet nervous of how being pregnant and MS would work. My pregnancy started off on a rocky start with a relapse that I encountered in August 2017. I remember waking up that morning feeling sick, but I thought it was just morning sickness. I felt nauseous and dizzy, but I drunk some ginger ale and went into work. Around lunch time, I felt so sick that I couldn’t drive myself to the doctor, so my co-worker and manager drove me. My fiance and family met me at the hospital. The emergency room started me on steroids immediately, but I had to follow-up with my neurologists to finish up the five day treatment. I was warned by the doctors about the negative side effects that the steroids could cause like cleft lip and low birth weight in babies during the first trimester. It could also positively affect the baby by helping to develop my unborn baby’s lungs. I was never worried throughout it all. I prayed and asked God to cover my unborn child and I, and I left it in His capable hands. I knew within me that God intended for me to be pregnant and to deliver my baby, so I felt a sense of peace.

I felt this peace throughout my pregnancy. It’s a feeling that I can’t describe. Every time I would begin to overthink, something would happen to put me at ease. God opened door after door, and closed some too, and I’m forever thankful for Him. I delivered a healthy and beautiful baby girl on March 6th, 2018 at 4:48 pm. A true miracle and my sunshine in the midst of the rain. I just marveled at the fact that I started having MS symptoms in March 2017, and the following year March 2018, I was holding my a new baby in my arms. Perfect example that trouble doesn’t last always, and the tide does turn.

God is who I relied on during tough times and He is who I continue to rely on (good or bad situation). My strength doesn’t come from me alone. That’s why I can tell you if you’re battling a serious situation, no matter what it is, to give God a try. Open up your heart and begin speaking to Him. He’s listening and waiting. He’s not looking for you to be this perfect person with a squeaky clean background or have the perfect words. He just wants you to be sincere in your walk with Him. He’ll meet you where ever you are. Try Him and the sun can shine in the midst your rain too. Peace & Blessing to you all!!

MS Diagnosis

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The symptoms that I experienced leading up to my MS diagnosis in May 2017.

It all started in late March 2017, when I felt extremely fatigued, experienced blurry vision, and was having symptoms of a sinus infection. Due to living in the South, I typically suffer from seasonal allergies and reoccurring sinus infections in the Spring. The first time I went to the doctor, I had the typical diagnosis of seasonal allergies and she told me to take some Claritin D and that should help me. After taking it, I didn’t feel any better, so I went back to the doctor, and she gave me a round of antibiotics. She said that it was bad sinus infection and she attributed the blurry vision to the pollen getting in my eyes and causing irritation. Pollen fell heavy this year, so a part of me wanted to believe that she was right.

The weekend of April 7th, I remember going on a trip with my cousins and friend to Atlanta for my cousin’s birthday and not having the energy to truly enjoy the festivities. When I returned home from the trip, I went to visit my Mom later that week and she told me that she had been praying for me, and God revealed to her that something was wrong and that I needed to go back to the doctor. That following week I made an appointment with my primary physician, and again I was told that I had a sinus infection and she sent me home with antibiotics. She also told me that I may want to get some eye drops to flush the pollen out of my eyes.

On April 30, 2017, my partner woke me up and proposed to me!! It was a Sunday that I will never forget!! I remember being so happy and then immediately feeling so sluggish, that all I wanted to do was retreat back to bed. Bummer, right? Thankfully, He was patient with me and we laid down for a while before visiting my family to celebrate our engagement.

In the early parts of May, I was sitting at my desk at work finishing up some task before going home for the day, and I noticed that my vision got blurrier, I had tingling in my hands and feet, and numbness on the right-side of my body. I researched the symptoms on Google and was surprised to see that those were symptoms of a stroke. I began thinking could I be having a stroke at 27 years old? Other than allergies, I had never had any major health issues. With all of this in mind, I gathered my things, called my fiance, and told him that I needed to go to the emergency room immediately.

Once I got to the emergency room and they called me to the back, I told the doctor the symptoms that I was experiencing and she told me that she didn’t believe that I had anything life threatening going on, but she was going to have me do a CT scan just to be on the safe side. Well, to her surprise, the results weren’t good. Per the CT scan, it appeared to be a mass on my right parietal lobe. Imagine that? Imagine how I felt going to the doctor repeatedly and telling them something was wrong, only to be told that it was “just” a sinus infection. I was confused and afraid, but I began praying to God immediately. I just didn’t understand. How could I just receive a promotion at work in February, get engaged in April, and receive such devastating news in May? This was not in my plans and certainly wasn’t what I considered to be fair.

After the emergency room visit, I had to follow the insurance protocols in order to see a Neurologist. Per insurance, you can only see a specialty doctor if you receive a referral from your primary physician. So that’s what I did. I prayed to God and asked him to point me in the direction of a “new” primary physician and I found a new doctor who could see me immediately. On May 12th, my Dad and I walked into Dr. LuAnne Aquino’s office in Bluffton, SC , and she reviewed my results from the emergency room visit and performed a neurological examination on me. She immediately told me that she was going to call in orders for me to be admitted into St. Joseph’s Candler hospital in Savannah, GA because she had a friend and former colleague that was a surgeon working there, and he was one of the best surgeons to remove the tumor, if that’s what the mass was.

That same day, I admitted myself into St. Joseph’s Candler and began undergoing MRIs and test immediately. The doctors told me to stop taking my birth control and any medication that I was taking previously. This was the first time that I had ever been admitted into a hospital or even had a MRI done, so everything felt surreal. I believe that there was so much happening so fast that my mind was trying to keep up. To cope, I just kept calling on the name of Jesus, and my Mom would play gospel music to keep my spirit encouraged. Through it all, my support system (my family, fiance, and friends) remained solid and never left my side. We did not know what to expect, but everyone remained HOPEFUL and never stopped praying. I remember spending Mother’s Day in the hospital this year.

After 3 days in the hospital, it was determined that I had MS per the MRI, but the doctor wanted to perform a spinal tap to verify that I had MS antibodies in my spinal fluid. He also started me on a steroid IV treatment to reduce inflammation and help with the MS flare. A couple days later, the results came back from the spinal tap, and it verified the MS diagnosis. I was in the hospital for a total of 9 days.

This is just the beginning of my journey navigating through life with MS. Over the course of 4 years, I would have some highs and lows, but with God, I am still standing and able to tell my story. The purpose of this blog is to encourage you all to take your health serious and to listen to your intuition (I call it the Holy Spirit/God) when you know that something is wrong. Overall, it is your responsibility to take accountability for your life and health. Yes, we have medical professionals to help guide us with our health, but we can’t put the responsibility solely on them. We have to be more mindful of the foods that we eat, our water intake, our spiritual and mental health, and how often we exercise. The “small” things that we may not think makes a difference in our well being, ultimately make a difference.