THIS IS MY MStory
It was January 2009, and I was fresh off of a week-long vacation and at work sitting at my desk on the phone with a co-worker. While on the phone with my co-work when I felt my lip tingle and become numb (I thought it was strange, but no big deal). I felt this burning sensation in my chest and my skin felt like it was on fire; then the right side of my face go numb (I was wondering what that was about, and figured it was no big deal).
I didn’t pay it any attention until the rest of my right side went numb and felt dead; because of my family history of strokes, I started going through what I know to be signs of a stroke. I ended my phone call due to it being difficult to talk and speech slightly slurred. I checked my face for twisting around the mouth. I attempted to drink water and could not swallow. Panic set in, prayer instantaneously started silently and I tried to move around.
I was scared, but I didn’t really react the way you should in those situations. I was busy trying to regain control of my body as oppose to calling for help. In addition to that, I did not want to make a scene at work. I thought to myself, what of this is some serious panic attack or something. I questioned was this real or imagined. I had minor numbness and tingling before on several occasions and the doctors would tell me it was because I was overweight, overworked, and stressed out. They never took it seriously and investigated it.
Eventually I end up at the hospital scared, confused and out of it. My time in the hospital was weird; I spent almost 72 hours on a bed parked in the hallway. A team of neurologist were coming to ask me the same questions what seemed like every five to ten minutes. I was scared, tired, and annoyed. I went through several test, and after every test, I was placed back into the hallway where I listened to continuous wailing and screaming from other patients that were also stuck on hospital beds placed in the hallway. I watched the psych patients that walked around disrobing themselves showing their unmentionables.
They ran several tests, suggesting that I was mentally unstable, or had HIV, and other issues. I tested negative for HIV, and had a history of that to back it up. They tried to pin my symptoms on other STDs in which I had no history of and tested negative for. I was not imagining what was happening to my body. They kept asking me was I on drugs or an alcoholic. I repeatedly told them that I haven’t used drugs in more than 10 years and I am not a drinker (I drank a total of 4 to 5 times a year). I wasn’t on any medications. I did not have any other issues that would cause me to lose feeling and mobility to an entire half of my body. They even questioned my tattoos and piercings. The team repeatedly came and said the same things over and over and repeatedly I had to explain to them what happened. They poked me, and stuck me with pins, needs, splinters, etc. testing my neurological skills, etc.
Eventually a doctor came (new to the situation) and wasn’t pleased with the progress of my case and demanded that I be moved and admitted to the stroke unit after he looked at my chart and I explained everything to him. They explained to me that I had a mini stroke, and proceeded to go through several test, these test included MRI’s, lumbar punctures (4 to be exact), and lots of blood work. I went through occupational therapy, physical therapy, psychology, etc. I had to get help for everything including swallowing, and chewing. I was on a walker and had to rehab for standing and walking. I had speech therapy to help me talk better. I improved pretty quickly and was released from the hospital.
Before I left, one of the doctors from the neurological team came to talk to me privately. He said we found a tumor on your brain. He said, “We are not sure of what type of tumor, or the seriousness of it, but it is definitely a tumor.”
My heart sank, and I was speechless. I went from happy that morning to be leaving the hospital to sad, confused, and lost, but grateful to God that they found it. Eventually all I could get out of my mouth was; “How big is it?” They told me it wasn’t that big but it is there and I will need further testing.
I complied and had outpatient testing and follow up, but I got sick again, this time it was weakness, and the numbness came back to the opposite side of my body. I was confused as to what was going on. I did not suspect it to be a stroke but I knew something was wrong neurologically. I was again back in the hospital.
This time after testing, my doctors came to me and said “We are not sure, but we think you may have MS.” “MS?” “What exactly is MS? I have heard of it, but what is it, and what do I have it?” “Where did it come from?’ “Did I cause this?”
More MRIs, cat scans, blood work, neurological test that involved me being shocked into pain ensued. And 2 more lumbar punctures, to follow……. (At this point I am traumatized by the SPINAL TAP). I felt like I was a character in one of those SAW movies or something. I recovered enough to be released from the hospital. Again I did outpatient care, and went back to my usual day to day.
I got sick again, and I was back in the hospital. This time, I did not want to stay; I was over the repeat test, the repeat questions, and so on. I was like, ‘God will handle this”. They still were not sure of my diagnosis.
February 2009, I was officially diagnosed with multiple sclerosis. I was relieved to have a name to this ATTACKER and INFILTRATOR of my body. I was not fond of this anonymous being that I had to fight for dominance over my body. I broke down crying and praising my Lord Jesus Christ. The doctor showed me my MRIs and my brain (all four lobes) was completely covered in masses and lesions). I was creeped out by that and it gave me a fear of sleeping. MY doctors immediately ordered IV infusion steroid treatments and I had a round the clock nurse and referred me to the MS Clinic affiliated with the hospital that cared for me.
Because of my super busy life with a full time job, a part time job, being a single mother, being a freelance journalist, consulting, and public relations work, things were crazy. They already had to confiscate my laptops while in the hospital from me working so much.
In my treatment process; I had another important choice to make, and that was to choose the medicine that would help manage my MS. My dilemma was that the most important medication needed were through injections. I have a strong disgust for needles (due to me growing up around heroin addicts). I had to be properly trained on how to give myself daily injections and it made me nauseated every time I had to pull out one of those needles and stick it in my body. To this day I am still not used to those injections; they are painful, but they are helping me in my war against the MS Terrorist.
I was hospitalized and released again in March. I lost a feeling and sensation to my body again, and I was very weak. It was crazy, and I was worried since I had not fully regained sensation after previous episodes. After another MRI, something amazing was revealed; the lesions and masses were disappearing. God answered that prayer, and I was grateful.
2009 was a year that I truly bonded with the Lord, and we went from distant acquaintances to BFF’s in a sense. My life took on a life that I never expected. My body made me aware of all the precious things it’s capable of doing and I developed a great respect and appreciation for them. My life was different. I went on a journey of being in and out the hospital all of 2009, and that went on to 2010.
The 2010 MS ATTACKs were massive to me; I lost my ability to walk. This led me to a serious journey of self-discovery and I matured my relationship with the Lord through this process. The beauty of this was that MRIs showed that more than 50% of the masses and lesions were gone from my brain. The Lord was putting in work!
While I was dealing with this illness, my brother was going through Kidney failure (last stage) having strokes, and seizures. So not only did I have to care for me, but for him as well. Life was really a whirlwind. In the midst of that, I found myself looking for a 3rd job to provide for my family. It sucks being the provider of your entire immediate family and you are sick.
The MS Terrorist was no doubt kicking my butt in this war but I had to keep fighting. I armed myself with the word of God, the Holy Spirit, faith, support of those closest to me. I read the Bible, I stared at the pictures of my son, I prayed, and I was totally positive about it. Things were messed up, but I was alive, and capable of doing something; I wasn’t completely down and out.
I recovered, and was left dependent on a cane and a side stepper walker. I was very adamant about not giving in to a wheelchair. I experienced several challenges, but I kept pushing through. The Lord led me to the church and biblical community that I had been asking the Lord to lead me to for 10 years (yes I said 10 whole years….I’m not a saint).
Within this church community, I stumbled upon, this amazing small group with these women that I do life, study the bible and serve with; I felt some fulfillment in life. These women are my family, my sisters, and they keep me sane. My pastor is amazing, and I truly have a bond with him; I have learned so much from him and his staff (they are my family as well). I was placed in positions to serve, with some amazing people. Through serving I was blessed with wonderful friends.
One of these friends in particular goes above and beyond, and to this day because of my fears of spinal taps and MRI machines, I can count on her to be there right by my side praying, and giving me positive reinforcement to calm my nerves. She literally goes into the x-ray room and site next to the MRI machine, while I am getting the MRI done! God is so amazing!
In the midst of this war, God blessed me with all these things and people to replenish my strength so that I can keep fighting and assure me that I am not alone. And to put the icing on the cake, I have the most amazing son, that is there to give me all the hugs, kisses, and positive energy I need while going through this battle. He has been very helpful in my recoveries. I have been deeply humbled by all of this. I remember times where I had to use bed pans, and those moments when my mom visited and had to feed me my food as if I were a newborn child. Those moments allow you to see your level of pride, and help you gain a sense of humility and humbleness.
Every day presents a challenge. I have dealt with issues with decreases in my vision to coming to learn about masses and lesions on my optic nerves, to memory loss, cognitive problems, pain, irreversible brain damage and fatigue. I have what I have categorized into “Good Days”, “Not So Good Days”, “Bad Days”, and “No Comment Days”, and “Scary Days-Be on Alert”. I trust God to get me through it. I am thankful for all those that help, support, serve, and love me out of the loving-kindness of their heart. I am thankful for my mom and my son; they have seen me at my worse. Glory be to God for allowing me to hear His voice and His faithfulness in this journey.
My goal now is to advocate, tell my story, to tell others story, raise awareness, be a prayer warrior, to support, encourage, uplift those under attack of the MS Terrorist whether it’s directly or indirectly and to fight, fight, fight!