So this is crazy. I have been diagnosed with MS. I feel like I just got slapped in the face. Not exactly what I had in mind for 2018 but I’ve been through a lot so its not easy to take me down. I have been back and forth in the past about actually sitting down and writing my story. I have a lot of material. But where do you start. How do you tell your full experience and still leave other peoples personal lives out. Everyone’s story is from their own perspective and all of these stories overlap with synchronicity but they are all different. Everyone is entitled to their own story. I think its time I start writing mine. I will chip away at it in hopes it may help someone else. Sometimes when you are faced with a mountain its hard to see yourself on the other side. Reading peoples stories and journeys over these mountains can inspire hope and determination for those just starting out.
I have trouble telling stories sometimes. I want to plan out the timeline. I want to set the scene, be descriptive and create visuals. I want to plan out the beginning, middle, and end with precision, sticking to the facts while being sensitive to anyone who may have been there or in a similar situation. But that’s now how writing works and that’s not how life works either. So I’m going to just write. I will start from now and as my memory and feelings are awoken I will write about the past. This is not a dialogue up for discussion or dissection, its just my story. I don’t want medical advice. I have plenty of doctors and I spend enough time googling my symptoms. I just want to inspire hope and a sense of normalcy in others. Sometimes all it takes is to hear someone say something out loud that you have been feeling to feel better about those feelings, to realize you are not alone. That’s all this is. My blog. My platform. My Life as Leila.
Part 1. The Onset of Parathesia
The holidays were crazy busy. We went to Oklahoma for Thanksgiving, my brother stayed with us for a week, then NYC, Christmas, and upstate NY, all the while busting out it out in the restaurant business during one of its two prime seasons (holidays and summer). I just wanted to make it to New Years Eve then we could all relax and get back to our regular schedules. After New Years there was a ton of snow so Christmas break turned into a two week long ordeal of lazy days lounging around the house. While I love relaxing at home with my family, I also love to be busy and organized and I was looking forward to getting back to life after holidays. I was off work from the restaurant for two weeks after New Years Eve and even that I was kind of looking forward to. My first night back at work was a Friday, it was not stressful, it was pretty easy and mellow. Not busy, no drama, a nice slow easy return. I went to sleep and the next morning I woke u with a strange numbness and pins and needles feeling in between my legs all around my hip area. Maybe I’m pregnant I thought and just ignored it. I went to work that Saturday night.
Sunday I woke up and it spread all down my legs to my feet and and up my ribs to where my bra rests. This is weird I thought, but I wanted to have a nice family day. We had plans to practice my sons new drone on the beach. I decided to just call my doctor on Monday. The next day I saw my PCP and he told me to go to the emergency room to get an MRI, he said it was easier this way to get around insurance. I made sure to grab a book, a bottle of water, coffee, and some snacks before I headed over there. No big deal, no major worries yet. The hospital was packed with the flu epidemic. People were wearing masks and the halls were lined with people on beds. I politely covered my mouth with my shirt and read my book. They took my blood, gave me a shot of steroids which did not reduce my symptoms, and I got a cat scan on my brain and 2 MRIs, one on my middle back and on my lower back. When I told my husband about the MRI he lied and said it was easy so I wouldn’t worry. Yeah they are pretty terrifying, especially in a hospital. You are laying to a stretcher and entered into this space coffin while you hear loud clanking and banging noises. This is the machine ‘working’. How long will this take I asked? Each one is 40 minutes. What! Oh F. I started praying. They gave me earplugs. I had an internal voice at this moment telling me I had MS.
After the tests were done they found nothing. Then a second doctor appeared who wanted to help ‘solve this mystery’. Around the same time my sister showed up. At first I liked this doctor he seemed nice, but the conversation quickly turned. I started to get the feeling he was not a doctor but maybe a resident in training. He started asking me about my sexual history, STDs, drugs, my past, how many people I slept with, if my husband had STDs. I am always honest and frank with doctors because they are supposed to help you right? I told him about being on interferon for a year in 2008 to cure my Hep C. He said “You just use marijuana or anything else?” Yes. wait what. He tricked me but I mean its practically legal at this point. He said he wanted to test me for syphilis, and they wanted to keep me overnight to see a neurologist. I realized after I left that syphilis makes you insane so this is the point where I stopped being a patient and was being treated like a psychiatric case. They didn’t believe me. He handed me some papers and told me to hold onto them until they had a room available. These papers were supposed to be my file. Well of course I read them. On the back of the last page it said: urine drug screen to rule out cocaine bugs, possible hallucinations due to marijuana abuse, and in the upper right hand corner: heroin addict from 1999-2001. I never told him about using drugs as a teenager because I mean, how many people used drugs as a teenager, how relevant could it be now 20 years later. I marched right up to him and asked him what the hell this was about. He tried to play it off like it was just protocol and if it really bothered me he would just cross it out. I went back and forth consulting my sister and we quickly left. I felt betrayed. Its not a good feeling to be profiled and stereotyped as anything. I felt like my treatment had officially ended. I asked him if he thought I was lying if he thought it was all in my head. I was livid. Everyone has a past it shouldn’t influence your treatment.
Yes I smoke weed to relax sometimes and no it doesn’t make you hallucinate, its practically legal at this point. I did do heroin from 1999-2001 when I was 14 years old – 20 YEARS AGO. My parents divorced, my dad left the country, and my mother started abusing Xanax, a lot of it. I actually met all these heroin addicts because I was selling her pills because they were everywhere, she had 3 different prescriptions. We were living in roach motels for about 2 years. It was not a fun time those teenage years. I overdosed at 15 and stopped at 16 because I finally had a somewhat steady place to live. More details on this part of my life are for another post. Meanwhile isn’t there an opioid epidemic?! I’m not an anomaly. Anyway this doctor decided to play detective and look up my history from literally 20 years ago and label me as a junkie whore who was probably hallucinating from drugs or all the STDs I probably picked up. I realized that he just wanted to be the hero, slap an answer on my symptoms, and write it off as being ‘all in my head’. I didn’t really want to leave the hospital but it was the better of the two options. It was not a good feeling.
The next day I went back to my PCP. He told me I should see a neurologist and that I was probably just emotional, and gave me some Lyrica, a drug prescribed for fibromyalgia. Fibromyalgia is a diagnosis used to describe unexplained chronic pain common in women and is said to be linked to emotional stress. I felt like I was being called a hysterical woman. Meanwhile my symptoms were increasing. The numbness was becoming so uncomfortable my skin was painful to touch. It also started showing up in my palms. When I would wash my hair it felt like straw. I was becoming clumsy, my feet felt swollen, my legs stiff. The pain around my stomach was increasing. I sought out an acupuncturist and described to her that I felt like someone had a voodoo doll of me and was squeezing my torso. She replied, ‘constricting’ interesting. I later googled this better description of my symptoms and found my answers. The MS hug. I couldn’t believe it. It was exactly what I had been feeling.
to be continued…