“This is the story all about how my life got flipped turned upside down.” (credit to DJ Jazzy Jeff and The Fresh Prince.)
This is a story of how I received a diagnosis, fighting for yourself, questioning yourself, and ultimately growing as a person. All throughout this journey that I am still on I have to say to God be the glory. I would not be where I am without Him.
The Healthcare Environment and Me
My journey to be diagnosed with MS has been frustrating, unexpected, eye opening, infuriating, encouraging, and challenging. I know I am not alone with my journey to get to where you have a diagnosis; one you were expecting or one that came of seemingly nowhere. I have been a registered nurse since 2003 and worked in healthcare for the 3 years prior. The healthcare field, terminology, doctors, tests, hospitals, and that whole world to me is home. I feel very privileged to get to work not only doing something I love and am good at but with co-workers that are more like family than just people I work with and kids that remind me that there is always something to smile about. At times I don’t know what I would do without them. They have allowed me to get to where I am with some sanity left. But even before becoming a nurse I had grown up in the healthcare environment. I was diagnosed with Type I Diabetes at 8 months old back in 1978. That is another story for another time.
The Symptoms That Started it All
Looking back, my symptoms of MS were easily contributed to diabetes, work stress, dating, partying, family life, and trying to do it all, all of the time. I had been having bizarre symptoms since 2012. I would have joint pain, rashes, inflamed eyes, fatigue, narcolepsy type falling asleep in broad daylight episodes, muscle pain, bone pain, and frozen joints. Summers became almost unbearable. After cleaning only a small guest bathroom, I would shake and tremble and be completely wiped out. I went on a 9-year journey to try to figure out what was wrong. In movie form this is where “Don’t Stop Believing” would start playing.
Things Changed with the Opioid Epidemic
I was cool with any diagnosis ranging from vitamin deficiency to full blown psychosomatic type diagnoses. All my x-rays would be read as normal. About the only thing that showed up that proved maybe something physically was going on were the rashes and frozen joints. OTC medications and therapies were not working. Unfortunately for me, prescription pain medicines worked. In the beginning, before the government decided we had an epidemic going on, I could get relief and go on with my day. As the number of people overdosing on opioids began to grow, there was a huge mindset change with doctors. Suddenly, I was a drug-seeking, overly dramatic, nut case. Overly dramatic nutcase may be true but never drug-seeking. I was referred to pain management and psychiatry. Psychiatry was like you are normal, go away. Really? Cool. Pain management was literally filled with spawns of Satan pretending to be medical professionals where you would have to sign a contract with the devil to be treated. And the “treatment” would have potentially cost me my mobility and who knows what else. Thankfully I am a fighter and refused to be treated how I was being treated.
Advocating for Myself
I decided to listen to my body, myself, and my intuition and seek help from other sources. As a pediatric rehab nurse who works with children needing neurology, orthopedic, genetics, and a host of other specialties, those just happen to be my specialties, I treated myself like I was my patient. I started with neurology because part of my ongoing and worsening symptoms were lower back pain and migraines. I also passed out and had 3 concussions in less than year. Cardiology causes were ruled out and so I thought well, ok, freak accidents, it happens. My neurologist, who I chose myself after much research, ordered an MRI based on symptoms and history involving concussions. I was like well there’s a novel concept considering literally no one thought to order one before. One time the only thing ordered was a chest x-ray. After a concussion. I’m thinking have I been abducted by aliens??
The Doctor Asked Me to Come in to Discuss My Results
I get a call a few weeks later from my neurologist telling me he needed to see me in his office to discuss the results. In other words, as I know too well professionally, there is something really wrong and I’d like to tell you in person. So, I was like crap, is it really a brain tumor? Son of a bitch….. At the appointment I found out I had “multiple areas of T2 hyperintensities in the white matter suggesting a demyelinating disease”, aka, multiple sclerosis. I then had a lumbar puncture which was negative for anything concerning, Praise the Lord. My neurologist then decides to send me to an MS specialist because my MRI, labs, and symptoms were not adding up to a diagnosis of MS. I mean of course not, that would be way too easy. I was relieved at first. Then I was back to what the hell is actually wrong with me??? Some days it was like “hello darkness my old friend….”
Seeing an MS Specialist
After seeing the MS specialist in January of 2020 there was not anything definitive and then COVID hit. Because of the pandemic I did not follow-up with the MS specialist because he was 3-4 hours away from home, nobody knew much about COVID yet, and I felt it was better to stay away than risk getting sick. I had 2 more MRIs locally, one being with contrast. Before hearing back from my neurologist, I began having fatigue like I never had before. I could not get out of bed. I was sleeping 15-18 hours a day and still felt miserable. There were some good days. And some days were like WTF?? I felt like Taylor Swift singing “I think I’ve seen this film before, and I didn’t like the ending” or “it’s the end of the world as we know it” or “but life is just a party, and parties weren't meant to last.” I did hear back from my neurologist, and he sent me back to the MS Specialist. The only thought that came to mind was “why don’t you love me?” On March 12, 2021, I received an official diagnosis of MS and a treatment plan. All I really heard from that appointment was “we are going to make you feel better.”
The Medication That Surprised Me the Most
It is now May of 2021. I have received 1 Tysabri Infusion. Most days I am still like “really MS, go away.” One surprising thing is how my mind was changed about something minor to most people but to me was still a big deal. And that was my views on pot, weed, Mary Jane…… marijuana. I knew I was not a social support group-type person. But I did look at Facebook MS pages. Yeah, that is not for me. I couldn’t separate my job from being in the same boat. I felt I needed to be the nurse teaching everyone about their illness, this illness, now my illness. I don’t see MS so much as an illness but more like a needy, bullying, conjoined twin. It has a mind of its own. And just when you think you may have something figured out its like “not so fast….I was just kidding, you’ll never get me.” Its kinda like The Wicked Witch of The West chasing you saying, “I’ll get you my pretty….” Ok so marijuana came from viewing these pages. Everyone’s advice on what worked: marijuana. The one thing you need: marijuana.
Giving In and Trying It Out
In my head I’m thinking “but that’s an illegal drug and I wouldn’t look good in prison.” I’m not good at lying, I’m not a criminal, I have NO street smarts, little common sense, and can be quite dramatic. I was telling a friend I’m just never going to feel good because apparently the only thing that works for this crap is marijuana. She pulls out a gummy worm and says here, try half tonight. I start freaking out!! I’m looking at it like OMG, there is a drug in here!! But I was getting my butt kicked that day so I boxed the little thing up and drove home like it was a bomb in my purse. That night was particularly rough so about 1:00 in the morning I pull the little worm out. I look at it freaking out on the inside. I eat half. Worse tasting thing I’ve ever had!! I laid back down praying to God for the acid bears not to show up, not be chased by the color purple, and apologized profusely for partaking in criminal activity. I finally went to sleep.
Breaking the Law but Feeling Better Than I Have in a Long Time
I woke up the next day like “f*cking hell”….I felt better than I had in a LONG time. I was seriously mad. I live in a state where it is illegal and I seriously cannot go to prison. I have too much to lose. I tell trusted friends and family my now predicament and that I’m being punished for breaking the law. I am told to look at it objectively and not through a lens that society or our government has framed it as. It’s a weed, that grows in the ground, its natural, nobody combined battery acid, Gatorade, and Sudafed together to make it. It wasn’t made in a lab. After researching it, trying it in different circumstances at different times and it consistently making me feel like myself again I have to hand it to the little weed.
Our state just passed a medical marijuana law. Part of the bill states that it is not a first line of treatment. It can be used when opioids and benzos are not therapeutic. Ok so in a government declared opioid epidemic with restrictions on everything and doctors being investigated and punished you now want them to prescribe stronger opioids for longer periods of time, and add in other “dangerous” drugs so that marijuana is a LAST resort??? Do you really think we can’t see how crazy that is? In other words…. The legislatures and policy makers are in with Big Pharma, who I love, don’t get me wrong but they put these restrictions in so that doctors have to prescribe more and more Big Pharma drugs thereby making more money for them and not losing out on marijuana money that does not need Big Pharma to exist. It really is disgusting the way people’s lives in regards to their health are so dependent on the trend, mood, monetary incentives of government officials.
Medicine Is Not a One Size Fits All
I’m tired of my life being affected by my medical conditions and to top it off I have to deal with the bi-polar ever changing “rules” that the government says we have to follow for treatment. If this diagnosis is helped by this drug or drugs then who cares what classification they are in, how many there are, etc… It should be really simple. I get whiplash with the way the laws change. My health, well-being, quality of life, livelihood, and time here on Earth should be between me and my doctor. Medicine is not a one size fits all. I bet if people could have access to the things needed to actually have a life then the government may not have to spend so much on social programs because they have taken the right away from a person to have the treatment that works for them. I hope things over time will get better. In the meantime as Prince, The Artist, said “ Dearly Beloved we are gathered here today to get through this thing called life.”
Have you ever experienced a "weird" symptom and wondered if others with MS have experienced it too?