Today I watched a documentary about environmental toxins. Because, as a self-proclaimed and certified nerd, I watch NOVA on my days off, pretty much all day.
One of the interviews I watched was a woman who was talking about diagnosis of cancer, and how the patients who are diagnosed with cancer experience this with a sense of overwhelming detail combined with amnesia. Some may remember every last detail that the doctor said, but can't remember how they got home. Some could describe their surroundings, the feel of the hospital, the bus ride back to reality, but not the actual conversation itself.
Not to be overreaching, but I believe all life-changing or otherwise major diagnoses are received like this. I certainly have more memories of my 'diagnosis' day than I would like, but like to think I handled things better than I could have.
In 2010, when things started falling apart, I felt like a walking disaster. I specifically remember getting glasses for the first time at the end of 2009 and talking with my Planned Parenthood nurse about birth control changes as my moods were erratic. I had only been on the pill for about five or six months, but thought it was my PMS that was causing me to feel 'strange,' for lack of better adjectives. I remember sitting in my office and snacking on saltine crackers because I was certain I couldn't keep anything down.
Most horrifyingly, I remember sitting in the very first day of my adult speech disorder diagnosis class and praying with all my heart that we would get out early as it was the first day, because I was so nauseated I was certain I wouldn't make it to the end. We sat in class for the ENTIRE grueling 2.5 hours. And when I got home, I was in tears. What the hell was wrong with me?
I guess now is the time to mention the irony that this was the very class that taught me everything I knew about MS until my diagnosis, and while I sat at my desk every Tuesday and Thursday convinced that this problem sounded an awful lot like what I was experiencing, my teacher repeated over and over to not go home and think we had it. Huh.
Over the next six months, I learned to deal with my nausea by popping Pepto Bismol tablets every hour or two. I learned that if I took more than 200 mg of Tylenol at a time, I ended up having an 'out of body' experience. I had a raging headache that floored me one day, so I took an Excedrin before going grocery shopping - I remember being so disoriented in the grocery store that I left my cart in the pharmacy section, literally ran to my car, and called my husband crying to come rescue me. I had to be rescued at the grocery store less than a mile away from my home.
I was embarrassed, scared for my heath, but mostly scared that my new marriage would fall apart in the wake of all these new 'issues' that neither of us knew how to deal with. My sex drive absolutely disappeared. I was already stressed out from having the relationship with my best friend dissolve shortly before we were married, and I attributed all such issues with that event. I even thought about writing her to tell her I was sick, but didn't know why.
I remember seeing the movie "Inception" with my good friend Tracey. I was convinced that what was causing my overall strangeness was because of my diet, so I stopped drinking caffeine and ate hardly anything. I tried to drink only water. But I tried to detract attention from my change in diet preferences and didn't complain much to anyone other than my immediate coworker and my husband. At the end of the movie, I couldn't get up. I had to ask Tracey to sit with me until I could get up without falling over. I was mortified. And I remember being just as freaked out at the movie theatre as I was at the grocery store.
But I was convinced things were better when at the end of May, I felt better in general. In fact, I felt better until two years later when my GERD became so bad I couldn't eat without pain. I don't think that was necessarily related to the MS - but it was notable just the same. Occasional nausea would hit but nothing nearly as bad as before, and I no longer felt like I couldn't do things because of the risk of feeling helpless. I still didn't take certain types of medications, certain that the Excedrin caused the episode in the grocery store, and I viewed the first half of 2010 as a terrible memory.
Until I went to work one day in November of 2013. I had been on a road for about twenty minutes when I felt the all too familiar pangs of nausea hitting hard. I remember calling my husband and saying, "not again, I can't do this again." It seemed to quell after a few days but never really went away. My depression spiked for a few weeks, and then subsided. I felt better than I had in a long time. I could actually count the number of days I felt good, until I took a trip to Mexico with my coworkers for a conference. At the conference, I was hit with an anxiety attack so bad that I cried for two straight days. When I came home, I experienced daily stomach cramps, but distracted myself with painting and writing.
Now I know those cramps were MS hugs, and my flare up began in November.
Before I went to the hospital to get diagnosed, I had lost most of the feeling in my left leg from my hip downward, and in the lower part of my right leg and foot. This bilateral numbness was what tipped me off to it being an upper motor neuron problem. I casually mentioned it to a couple of coworkers, with absolutely no response. I mentioned it to my friend, the same friend who I had lost in 2009, knowing that she was familiar with possible MS patients as the only ones I saw had dizziness. She didn't think it was MS. My sister thought I was kidding. I think my husband was hoping it was temporary and would go away in a day or two. But I knew better. It wasn't until the Thursday of that week, the 27th of February 2014, that I said something to the coworker that had MS.
She looked at me with an expression of pity and knowing. And that's when my boss walked in. I wish she hadn't, but I guess I wouldn't have had such an easy time afterward if she hadn't. She pulled me into the kitchen of the office and said, "You can't feel both your legs? You know what this means, right? Where the problem is?" I nodded. And I said a silent prayer. I told her I was going to go to the hospital when I heard back from the neurologist I called.
The next morning in the shower, I nearly passed out, and called in to work. My boss knew why, so I tried not to be too anxious. I was facing the busiest month, and most important, of my graduate career. I had job interviews and/or conferences every week in March, all of them out of state. I had a lot on the line. So I texted my sister that I was going to the ER (it was a shock, remember how I said she thought I was joking?) and told my husband I was going in. From there, all I was hoping was that I wouldn't leave without an answer.
When you go to the ER, you always hope it will go quickly. I was in a brand-new hospital that had just opened just across the street from where I lived (convenient, eh?) and it was a Friday morning at 7:30 AM. It was virtually empty, and I was seen immediately. I was on my period and super embarrassed to take off my clothes. The (very cute, young) ER doctor came in and asked me some questions, most of which I do not remember, and poked at me with a broken long q-tip. I reported that I could feel it, but was puzzled when he asked, "Is this sharp?" No, it wasn't, until... ouch! The bottom of my foot felt that sharp point, and I realized just how bad it was. Not all of my leg was numb, but the neurons were processing sharp and dull inputs differently. It was such a blur. Sometime after that, my sister arrived. I gave a urine sample. I was ordered to have an MRI, which took an hour and a half to do my brain, cervical spine, and thoracic spine. I had a very cold and uncomfortable ultrasound to check for DVT.
I returned to the room, and my husband had arrived. My sister was back, with a box of Good N' Plenty, my only food of the day. She knows me well :). And we waited. We waited for an unknown number of hours, before the cute doctor came back. I knew when they spent a long time after the MRI that they had found something - whenever a doctor tells you "I have to analyze this," unless it's a blood test, they know the results. I have to say it with every vestibular test and I always know the outcome at the end. Your radiologist knows the results of a slow test like an MRI, they just don't have the authority to tell you the results. He sat down on the end of the gurney, and mentioned that there were a few different causes of my numbers. One was Guillane Barre. My ultrasound was normal. Something about my blood tests being relatively normal, but indicating some kind of inflammation. The MRI came last. He mentioned that there were lesions on my MRI that could indicate vasculitis, but most likely they were consistent with multiple sclerosis.
I nodded, knowingly. My husband apparently thought I had a brain tumor, but this was good news in comparison. I don't think my sister quite understood this. I couldn't look at either of them and just looked at the doctor. "So, what's next?" He said I needed a spinal tap to help confirm. I asked if I could fly in a week, he said no, so I had to move my job interview. He said they were going to come in and give me some steroids. That's what I remember of the actual conversation. I remember sending my sister out while I had the spinal tap, which didn't really hurt but was scary. I remember wanting to sit up in the hospital bed because I was hungry, and couldn't eat my grilled cheese while laying down. They wanted me flat to keep me from getting a spinal headache. Then they came in with the Solu-Medrol. They didn't tell me one side effect. It was awful. I remember going home after and driving my car home. I remember getting ice cream with my sister, who was clearly distraught. I don't know why it took so long for my husband to get home, but it did. Maybe he went to the grocery store. Maybe he picked up dessert, but I don't think so. I remember giving my sister the lion painting and trying not to cry. In fact, I didn't. I don't think I cried about my diagnosis until weeks later, during my second round of steroids.
I wrote this account to verify that my hypothesis was correct - there are some things I remember in alarming detail from five, almost six years ago, and there are some things I barely recall. I hope that this encourages you to remember your own diagnosis stories. It may not be you, it may be your kids, your parents, or your friends who want to know the legacy of your story to know that you persevered.
It is now 2016. I have persevered thus far, and have a long way to go, and intend to love every minute that I can. May you all do the same!
MSloan
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