Every so often, written words float through my mind and along with those words, I see the scenes to pair with the narrative. The narrative flows freely from my fingertips, and I also envision the characters conversing casually with intermittent bursts of laughter and I just know these characters have connections and a bond that only best friends share. Continue reading
See this? Yeah. That’s my left elbow. I have PSORIASIS. Can you say that big word? I prefer to say it just like Sylvester: Thoriathith. Makes it sound not so disgusting. I’m not sure which is worse: the embarrassment of it during short sleeve season when acquaintences all ask if I have poison ivy; the constant nag of the burning intense itch of it which makes me look like a monkey going ape shit (no pun intended); knowing that it is never going away; trying to find clothes to hide it on the most sweltering hot days of summer; the fear of not knowing if it will be all flared up at an upcoming occassion when I would least want it to be; or the look on people’s faces when they see it. It’s all horrible. If you have it all over your body and not just on your elbows like I do, I pray for you, really. I’m sorry. I hear lots of people with MS have it. Do you or do you know someone with MS and Thoriathith? When it flares like this for so many consecutive days, it has historically been an indication that an MS flare is just around the corner. And my eyes have been achy. It almost feels like I have a sore on my right eyeball, but I do not see anything on it when I look in the mirror. It even burns a little. And, this morning, I realized that I have been making some very poor split-second driving decisions. I’m not taking risks that I would not ordinarily take, but my depth and timing perception seems to be a bit off, and I’ve been hesitating when its too dangerous to hesitate. I’m aware of it, and the first step to recovery is recognizing and admitting to your loved ones that you have a problem. So, here I am admitting it to you–whether you love me or not. If it seems to be persistent or getting worse, I’ll alert the powers that be about my newfound, behind-the-wheel concerns. Here I go again: itch, itch, itch, itch, itch. Oh, and what you see in this photo is nothing compared to the thoriathith flares I would get before being on Tecfidera. My elbows always had patches of something bleeding oozy, dry white and crusty and, okay, so I will stop there.
So, a few weeks ago, I was lost somewhere on Pinterest and somehow found someone’s pin showing how she made a t-shirt scarf for herself. Looked easy. Looked cool. Looked doable. So, I showed my incredibly sentimental and creative 14 year old daughter the pin, and she seemed to love it. So, when we could, we hit thrift shops looking for interesting t-shirts made from the same weight cotton jersey. Colors, designs, words and textures. We were on the hunt for all of them. It’s been a bit snowy here and the kids have had 2 days off from school, and what better way to bond even more than to work on the t-shirt scarf together. She chose exactly how she wanted each shirt cut and what designs to include on each panel. We decided that using a double layer of each shirt was the best way to go because just one layer may have been so thin that the scarf would roll up and not hold its shape. I put such love and effort into the pieces of jersey into a scarf. I could not wait to show it to her. So I woke her up at midnight–hey, it was okay because she did not have school the next day. And, in four small words, she broke my heart. They were, “What did you do”? Huh, seriously–how could this be happening when I am so excited about this masterpiece of original artwork of mine? She said, “I don’t really wear scarves, so I’ll probably never wear that”. First it was a knife through my heart, and secondly, she twisted it. I tried to model it for her, and she then instructed me to hang it up on the hook inside her closet door. I went back to my bedroom, looked over at my sewing corner and could not believe the mess of scraps and color snippets and threads piled up on the floor next to my workspace. Oh well, she may not like it now, but maybe someday she will. Maybe she can use it as a bed scarf or other decorative thing when she goes to college. Some would say never to make her anything again. But I will. Over and over again. Because I love her with all of my might.
It’s day 3 of the 2014 Winter Olympics in Sotchi, Russia. I’ve been channel surfing–er, a, er um, make that ‘sports channel’ surfing for the times, dates and players on the U.S. Hockey Team, and found this bit of information about the goalie for the Minnesota Wild, Josh Harding. Here he is, having what they are calling the best season of his career, after a recent MS diagnosis. I love to read good stories about MS victims defying the disease. So encouraging. And, he is committed to giving financial help to MSers who may not have the ability to pay for the good drugs, or even their food or utility bills. Good guy, Josh Harding, keep the momentum.
Oh, and I still can’t figure out exactly who will be on the U.S. Team, it seems like all the great NHL players will be representing their own country’s’ team. http://www.cbssports.com/general/writer/gregg-doyel/24379572/no-miracle-that-harding-is-having-his-best-season-after-ms-diagnosis
For a few years now, I’ve been thinking about the causes of diseases which plague(d) my family. Just like my mom did when she was diagnosed with lung cancer—for a brief minute she had tried to convince us that it was the type of cancer caused by something other than smoking a pack a day for 50 years. Mom even placed the blame for the (whisper it) ‘little bit of cancer’ she had in her lung on the additive chemicals that Big Tobacco secretly laced their cigarettes with. For a minute or two, I started to think that perhaps she was on to something. After a while, she’d call me just after seeing a money-grubbing, ambulance chasing, PI firm’s sleazy commercials aimed at luring unsuspecting potential victims of mesothelioma their way. She’d call and say, “Exactly what is Mes-O-Thele-E-Oma, is it the type of cancer I have”? Everyone wants to believe their mother—just like we did from newborns on up to say, age 12. At 12, we all think that whatever our mom’s have to say to us is a crock. After 25 or 26, I myself started to realize that my mom usually right and could possibly be almost, somewhat ‘cool.’ Yes, I said it. ‘Mom’ AND ‘cool’ in the same sentence. Whew! But, no, it was never, not even close to any asbestos related ailment.
Before her cancer, quite a few years earlier—maybe 10—my dad was diagnosed with Parkinson’s Disease. A disease his own mother’s brother had developed in his 60’s. A disease which is clearly known to ‘run’ in families. My mom took the opportunity to blame my father’s family for using too many harsh cleaning chemicals. Apparently, his mom—the grandmother I never met, who everyone swears I look just like—cleaned obsessively with Ammonia. I thought my mom was right about that too, because I was after all, over 25 years old.
Come to think of it, at one point or another, all married women probably try to pin their spouse’s faults on their upbringing. So, this morning, I came across—who am I fooling—a banner popped up and distracted me while I was reading a very interesting article on Fox News of yet another BS story which claims that http://www.foxnews.com/health/2013/12/10/artificial-sweetener-aspartame-is-safe-in-diet-soda-review-says/. That’s right. I’m blaming my disease on Aspartame. It’s hard not to. I became highly allergic to it YEARS before being diagnosed. And now: back to the banner which popped up and distracted me this morning. Okay, so it was not exactly a banner, but somehow, my computer sends messages about all that I view on the internet to EVERY electronic advertiser and those advertisers, knowing what appeals to me, buy space on my frequently visited sites—like Fox News—and flash something shiny in front of me which causes my ADHD brain to drop everything and run towards what shines. So, today it was this: http://nothingventurednothinggained.org/tag/gmo-foods/. And then, rushing back from the dark crevasses of my brain to the forefront of my tongue (which is very rare), early on in my diagnosis and even before that, with all the inexplainable viruses and symptoms, were the questions I had kept replaying over and over in my head: Was It Something I Ate? I had long ago depleted any household food items containing any artificial sweeteners from my diet and home. It was probably eight or nine years ago that I realized that asparatame was poison to my body. I would get swollen, itchy palms of my hands and soles of my feet. I could not walk. Would get achy joints, terrible headache and neurological confusion and, did I mention neurological confusion? It was hell, I could barely finish a sentence and only feel intense swollen, internal itching from head to toe. All I could do was crawl into bed after taking a good dose of Atarax or double dose of Benedryl and concentrate on sleeping rather than scratching my skin raw until I woke up and it was over. It would take a few hours. I’m sure my in-laws thought I was a nut because it seemed like I never felt well and had to get into bed whenever we visited them. Ironically, it happened a lot at their summer cottage. Maybe because they stock their pantry with tons of diet soda and had pitchers full of iced tea in the fridge—made with Crystal Lite (definition: a poisonous liquid which tastes like tea and is loaded with Nutrasweet)! If you ask them, they both say ‘we hardly ever drink soda.’ Yeah, right. OMG, I’m doing it. Blaming my in-laws. No, it’s not their fault, however, if it were not for their purchasing habits, I would have never figured out what triggered the allergy. So, once again, ‘thank you’ in-laws.
So, those symptoms truly were an allergy. But then when I was diagnosed with MS, I connected the two. How could I not? But after mentioning it to my doctor, she immediately shunned the idea. She did not even make eye contact with me when I told her that I was allergic to Aspartame and it caused severe neurologic dysfunction. She automatically said, ‘there is no relation.’ Hmm. But now, today, I think, what if all that edamame I ate and the tofu in my favorite Japanese and Vietnamese soups caused the disease? Is there a link between Aspartame and GMOs AND Multiple Sclerosis?
So, it’s been about a week. It was IV steroids, followed by the 10 day countdown of oral roids. No, I’m not too overstimulated. Actually, been tired, but have little tolerance for situations happening or not happening around me. Oh, and I am feeling round. It looks as if I’ve been pumped up with air–which puts me at discomfort even in my oversized Jammie pants. All hail for Jammie pants.
I do my best quilt piecing in Jammie pants. A little over a week ago–despite feeling and knowing I should not take anything else on, Gigi and I started a pair of fleece Jammie pants. Yeah, that fell be the wayside, but is on my mind for sure. I thought I’d be all gusto and uncover the ole’ serger again.
Serger. Ole? Not really. It does not even have any sewing time in it other than the initial classroom learning at Sun Sew N Vac. It was just before my mom died, and I just could not get back into it. Besides, it was boring to explain to everyone where I had been for a month and, frankly, I was in a different place. The place when people say stupid shit about losing a loved one.
The most striking of comments was delivered to me by a complete a stranger. At the Lancaster quilt show my sister and I very, very spontaneously go to 2 weeks after losing the most beautiful woman in our world. That trip was the best time together ever. It was such a relief that we no longer were only speaking about the minute by minute status of my mom–which was like, for four years. We still had Dad, but he was well-cared for the weekend she was away from him. Where was I going with this?
Ah! Hah! It’s great to be able to read my previous thought–had I been speaking, there would have been absolutely, positively zero recall of even having mentioned the bizarre comment. Which, by the way, has stuck with me every day since then. T and I were in a booth at the show (which was a fabulous show if I did not already say), and somehow, it came up in conversation with these women whose booth it was that our mom had just died. One of them, looked up and grabbed my arm, and said, “see, the way you feel now? You’ll never get over it.” She explains further, that she lost her mom ten years earlier and was still heartbroken about it. I felt all blood and color rush from my face upon hearing such words. I thought, what an awful discouraging thing to say to someone who is grieving. I kept waiting to feel better too. I’ve learned in the almost three years since that she was a bit crass in her delivery, but boy oh boy, it was honest and truth to the core. A girl can never get over losing her mother. There, I said it. That lady hit me with it square on. There are so many times I wish I could be that honest with people, but don’t want confrontation so I avoid it. But, at that moment, that was probably really what I most needed to hear. Maybe not that very minute standing in that very spot at the quilt show.
So, this voice I’m speaking with. It’s a weakened, raspier version of me. It has happened before during other flares, but can be very frustrating when I have to keep repeating myself. I guess a bit of facial and neck nerves got a little zinged. Although weak voice–I am strong woman today. I look back on the last three weeks, and I was really feeling like crap. Why didn’t I see the signs of a flare? Why was I just thinking that I was just over-tired and getting old? I should have had someone look me square in the eye and tell me the truth.
Oh, about the serger, after two nights of threading struggle, I put the fleece pieces together and after the first ten coverlock stitches, the darn thing got stuck and jammed in such a way that only a serger can do. It looks like I will need to hire a surgeon to un-jam that screw up. My kid, she’s awesome, she reminds me often that ‘we’ have not yet finished the Jammie pant project, but still remains confident in the pillar of strength that I show her.
Not that I haven’t heard this question before, but I am left dumbfounded. Is every disease like this? Since Day #1, the doctors have said “these are the drugs used to treat MS. Read about them, and tell me which one you want to take.” Does anyone else find this as comical as I do? Really, someone must be out there. And so, how it went today. Same deal, only with a new doctor. He said “Only you know if your new symptoms are concerning enough to either a.) switch to Tysabri; b.) start 3 to 5 days of IV steroids, or c.) start a 10 day titration of oral steroids. So, do you have any questions about your options today?” Well, um my left front head down to just below my chin is numb. Oh, sure, I’ll close my eyes. Right. So you’re going to prick several locations on my head, face and feet and ask me if it feels like the sharp of a safety pin or the rounded end of the safety pin. I like that you took a pin out of the official supply drawer tray marked with a label maker tag of ‘SAFETY PINS’ in bold black on white tape. Much more official than the doc at Hopkins reaching in to the crevices of his lab coat and pulling out belly button fuzz and tossing it on the floor after a roll between his fingers–and then, reach back in to the pocket not even trying to suppress the sound of his hand rattling through change before he finally pulled the official safety pin pricker out of his pocket. So he starts pricking away and I with my eyes closed, trying to keep up with his fast rotation around my head and face start telling him whether or not it’s dull or sharp. Hmm, “I detect significant numbness in the left region when compared to the right.” I say, Oh??? “Yes, I find it interesting because the active lesion which I saw on the films, was on your right pons–that’s pretty much the brain stem–and this numbness is perfectly consistent with that type of right side lesion.” This confirms that I like this doctor. He confirmed that he listened carefully to what I said, and he must be smart because he remembered what he saw on the MRI without even a twitch or temptation to look at his notes. And, of course, the clean safety pin–which, much unlike the Hopkins doctor who dropped his back into the treasure trove of white pocketness–he immediately tossed it in the trash can after his very scientific evaluation of me. Fine. My decision is made: “Pat, I’d like IV Steroids for 500, please.” Next stop: Infusion room. In the past, I’ve always sat in the community infusion room, but today I was confined in the solo sitters’ room. In a nice comfy padded chaise with crisp, white sheets and a covered pillow too. Top right hand today. Ooh, and I was given the remote to freely channel surf during my treatment. I have arrived. Where else would I be able to watch a 28- year-old episode of Cheers? It was the one where Sam calls a meeting in his office to discuss hiring a new bartender and nobody shows up until he hands each of his employees cash payment upon attending the meeting. I could not sit through the moronic commercials in between segments, clicked the remote like a maniac and wound up losing track of time, so by the time I clicked back, Sam had already met, interviewed and hired Woody Harrelson. Bummer. I used to L-O-V-E Cheers. Chris and I loved watching it together BK. Before Kids. Did I mention that I took a selfie during my hook up and that I’m getting old. Actually, not getting. I look old. My eyelids practically sag over my eyeliner barely revealing its color, and my neck has an actual curvy wave of sagging wrinkles on it. Hmm, for tomorrow’s infusion, maybe I’ll dry my hair with the round brush, some mousse and a shot of hairspray and retake this shot. If I still look old, then I guess I am old. And, if there is a scarf around my neck, I’ll know why.
This afternoon, on a Sunday, right in the middle of football (I swear I did not even think of this when I made the appointment) I had a terrific tri-MRI. That’s TRI for Head, Neck and Spine. The trifecta. The grandaddy of them all. A full three hour photo session. I am so lucky to have been able to have Rx on board. One before I left the house and the other in the changing room at the hospital. For the first time ever, I had a choice of which fashion gown I wanted to wear. Having only had one to choose from in the past, I chose to veer away from the standard Army issue battleship grayish-bluish to a pretty little white-n-purple print. Oh, I am so blessed to have such a great Army hospital so close to my home. Or is it, that I just didn’t have a say the matter, and it happens that it really works to benefit our family greatly? Whatever it may be, I’m blessed. After my first two MRI’s way back, I quickly realized that there is no good reason for my husband to be sitting in the waiting room for me. We live less than a 5 minute drive from the hospital, so we do a drop off and text to pick up routine that works quite well. If I did not have meds on board, I could and would do the drive myself, but boy, you should have seen my eyes in the changing room. They were completely bloodshot and my pupils were the tiniest they have ever been. I even stood at the mirror real close and opened and closed my eyes and covered them with my hands and then popped them open real quick to see how big my pupils got in the dark. Not very. Oh, come on, you’ve done this too before I am sure! So, the techs are so amazing. The first one, Scott, had me up in the chair to insert an IV and squirt a syringe or 2 full of saline into my arm. Yep, it was in properly. I must admit, I was quite impressed with his work. Too many times have amateurs stuck me inappropriately complete with pain, and hot swollen arms. I can practically do the darn thing myself at this point. Ask any other MSer and they will probably tell you the same thing. Between labs, solumedrol, and other drugs, we get stuck quite often. Oh, and I certainly can’t forget that wonderful GAD contrast in the middle of an MRI. Okay, so, I was VERRRRRRYYYY relaxed for this photo shoot. For the first time, I didn’t have the usual quiet panic attack when my head was locked in the Hannibal Lector mask. Then began the excessive banging of what I guess is a hundred magnets swirling around my head–but again, meds were so perfect, it did not even keep me awake that first hour. Is it possible that the changing charge of the protons and neutrons in my head made my back pain actually disippate during this phase? Then the very narrow bed of the giant white donut machine was slid out, and Jason, the tech who had an hour before rolled out an invisible red carpet for me to strut down to show off my haute couture hospital gown, unlocks and removes the Hannibal Lecter mask from my head. I’m told not to move, so I jokingly keep my teeth clenched and tell him I’m ready for my close up, and to please turn up the volume on the magnet banging, cause they just ain’t annoying me enough! Now he shoves some cushy foamy rolls around my head and neck. Again, don’t move. This time I’m in for just 30 minutes of loud banging which sounded a lot like: Meh, Meh, Meh, Meh, Meh, Meh, Meh, Meh, Meh, Meh, dd, dd, dd, dd, dd, dd, dd, dd, dd, dd, dd, dd, ong, ong, ong, ong, ong, ong, ong, ong, ong… you get the picture, right? I’m thinking for sure, he sees some spots, because he radios in to me and tells me they have to review the pictures before they go any further. Great. And a few more shots, and I’m slid out again. Now for the GAD contrast. No bigge at all. For the first time ever, the dye does not even feel all hot and swirly through my veins. I ask Jason if used the usual dye. Yes, Ma’am, nothing but the best for my patients. Here goes. The next hour and a half. Just before sliding in, I ask for the panic button to be put into one of my hands I have intertwined with the other one. Just in case. I’m not planning on panicking, but just in case I can’t sit still for another–wait–Jason, I have to pee, is it a huge inconvenience to get up now before the next set? Actually, it’s a perfect time. Wheweee, I had trouble sitting up. My eyes are very red when I glance up during my hand wash. Oh, shit, was I supposed to take out my contacts? Oh, well, no point asking at this point. And so the photos continue. This time just a little over an hour, and I’m more bored than anything. So, my mind wanders and I seriously start thinking about my spine. The numbness in my left leg sometimes and the electrical sparks across the bottom of my left foot. That right knee that has a mind of its own and often makes me look like drunk giraffe in the middle of a crowd. The pictures of my spine will explain all of that. I’m not sure I even want the results. I totally understand why some people choose not to have MRI’s at a certain point in their MS journey. They’re right, what is the point? My mind is still wandering. Maybe I’ll have the doc just give Chris the results and I’ll sit in the waiting room. Why should I know? It could be a major emotional setback for me that I really don’t need. It took me a long time for emotional recovery last Spring when I found out I had spine spots, neck spots and more brain spots. I’ll think about this all week before my appoinment. I took another photo. This one is of the order for today’s shoot. On the catwalk. I strutted my stuff on the catwalk to the MRI center, oh yeah, you know what I mean…
Forever, I am creating from my real life conversations, book titles. Talking to my sisters especially, in the middle of a good rehash of situation whichever one of us is talking about, I’ll just blurt out a title for the book or movie to be made about the story. Ironically, I can’t think of a damn one of those really good titles at the moment, but trust me, some of them are funny. For 23 or so years, I think of terrific vanity license plate names for our cars, but not one ever has ever struck my husband as being spot on for him, that he would want to run out to the DMV to buy new plates, and then register them, and then turn the old plates in, and then have the registration inspection done, and then actually drive around with new plates on the car, which now has become a label easily recognized by any given freakazoid on Route 1. Here’s a few I have come up with–the only one’s my Swiss cheese memory board can produce.
LNDSHRK. ( It’s silvery gray and a huge canoe of a car)
Okay, so just about a year after being diagnosed with Emess, and experiencing no less than four flares and 50 weeks of injecting myself with a weekly dose of poison, a new drug is forced on me. Okay, so the husband had been reading about this great new drug, BG-12, for months and months, and always brought it up at every visit to each of the neurologists I see. A drug, in trials. Being used in a milder form in the UK to treat psoraisis. The doctors are always excited to talk about this new treatment a/k/a DMD (Disease Modifying Drug). Who knew? DMD. Hmm. Just another acronym in the life of a military spouse. Yet another acronym for me to remember. Did I mention that it is extremely difficult for me to remember anything? Don’t worry, the doctors both said that is a pretty common symptom for some people with MS. And, they also said that sometimes Emessers can experience a regain of their short term memory. So, this new medicine, the doctor giggles, has a really funny name it will be marketed under when it is finished with Stage 3 of trials and after it is approved by the FDA. That’s the Food and Drug Administration (another acronym). It will be called Tecfidera. Doc says she questioned the drug rep in her office why a drug’s name would rhyme with etcetera? Lol. Haha. Then, she pronounces phonetically for me, the correct way, because I did not ‘get’ what was so funny the first time she said it. It sounds like this: Tech-fid-aira. There. Tecfidera. Again, she giggles and tells us (but only looking at my husband) that the drug rep explains that they gave it this name so it would have a Euro/International aire about it, so it could easily be recognized worldwide and easy for people from every nation to pronounce. Wow. Someone got paid to come up with a name to literally appeal to worldwide audiences. Not exactly Chanel, Gucci, Levi’s, or McDonalds, but people will recognize it. Worldwide. This is the same visit where the doctors tells us (but only looking at my husband) that MS is just as common as diabetes. Really? I ask. As many people have diabetes? Wow. Then how come I only know of three other people (2 of which are relatives–one from my mom’s side and the other from my dad’s side) that have MS, and at least FORTY people who have diabetes. She smiles sweetly, and tells me really, it is that common.
Good or not, seems like I can feel the blood vibrating through my veins. All the time. More so, when I’m stressed or tired. I try to explain this to the doctor, and she looks at me with her eyebrows raised and a half of smile. Really? There’s that word again. Wow, I have never heard any of my patients describe it quite like that before. I get it. So, I told her how it is. Imagine if you will, resting your hand atop some good old fashioned amped up stereo speakers–kind of just like the set in my family room that I don’t think my husband will ever be able to part. Now, crank Led Zeppelin. Kashmir. Crank it up baby. Feel that vibration under your hand that permeates and reverberates through your whole self? It’s just like that. So, when I say I can feel my blood boiling. Or, if I say, this tingling is driving me nuts. That’s what I’m talking about.
Great news for me today! A visiting nurse (Bonnie) just left my house after teaching me to use the new Avonex Pen auto-injector. Who knew giving myself an injection would be this easy! Just as I got used to giving myself the injection with the 21G 1 1/2″ long needle I am able and trained to now use the auto-injector with the 25G 1″ needle!!! This is groundbreaking news for Avonex users because the Pens have only been on the retail market for 3 months!!
Yep, that’s right–My immune system picked the best time in pharmaceutical technological advancement to attack my brain and spinal cord. I feel like the luckiest girl in the world. Much different from the time I was told—during the week of diagnosis—that it was the worst possible time of year for MS’ers with the fast approaching scorching hot Virginia summer looming and all. Yep, the sun’s heat does do a number on my head, general well-being, and causes some more temporary blindness, but heck, nothing compares to the excitement of being able to use the Pen to inject chemicals in my body.
Okay, so, try to figure this out. Here, look at my posts a few days earlier from today. This is what I mean. I obviously had zero recollection that posted practically the same thing twice. I hate that this happens to me. It was not always this way. I swear. Okay, I don’t swear about anything, but this recall thing is a hindrance, and it happens randomly. Usually in front of someone who may walk away thinking I am a moron. Or, am I?
There are moments of forgetfulness. Where did I put my keys? Has anyone seen my phone? Right. We all have those. But there are different levels of this kind of stuff that I was not aware of. Let me back up to six months ago. While mid-sentence I got stuck on words. It’s not that I forgot what I wanted to say, it’s more like not being able to remember the words. It could be the name of a thing, a concept, a noun, or a verb. The word or name for whatever it is usually called is absent from my mind.
Where did the words go? Did they slip through one of them there so-called lesions on my brain? That day. The day the doc showed us some pictures of someone’s brain. It was like that commercial. Remember the one? This is your brain. This is your brain on drugs. And you could laugh cause it was nothing but a hot skillet with a couple of eggs frying on it. Yep. Just like that. All those words spewing from the doctor’s mouth could not possibly apply to me. Maybe she recognized that my husband was more interested in what she had to say than I was, but she never really made good eye contact with me. So, for sure, it was just a generic brain MRI power point to show us that it was a great photo shoot, she knows all her parts of the brain cause she studied hard in medical school, and all looks just swell.
Not since I was a kid had I been spoken of in the third party at a medical appointment. What the hell was this woman saying? I glared over, and saw how my husband was hanging on her every word. Glad he was there. Somebody had to take note of whatever instructions she was rattling off. All I knew was that her personality left a lot to be desired. I saw one slide pass by real quick and I immediately spoke up. Big white spot. Big black spot. What was that a picture of? What, this is the part of my brain which is responsible for processing? Can’t be. Can be. What does processing mean? Is that why I can’t do math? Sort of. Would that be the reason for my loss of words, or why it’s impossible to recall some recent important conversations and decisions that I have apparently been apart of but again, have no recollection of?
A week earlier I was at my nephew’s graduation celebration. I was standing in front of the coolers on the patio. Just staring. And staring. Smiling cause I’m at a party and I can’t let on that I don’t know why I’m standing there. Oh, right. My sister asked me to see if they had a very light beer. Got it and a San Pell for myself. I sat down and as I was peeling the label off of the lid of the can, it dawned on me that something really bad had just happened. Maybe I was having the stroke I had been fearing for the past six months every time I felt a warm creeping along the side of my head.
A silent, slow, hum— a vibration caused by the rush of blood running through my body is always with me. Starting in my fingertips, I feel the blood rushing through my veins straight from there up my arms, across my forehead, behind my ears, through my hips and down my legs through my feet and then back up again. It never stops. Looking down at my hands, I sometimes see the tremolos sending signals to the part of my brain responsible for focusing on the inevitable. Not an anxiety, but a reality. For just about 2 years, the vibration combined with the occasional tremor has me certain that I am the lucky girl to inherit my father’s Parkinsonian ways. If it happens in my ankles and lower calves too, does that mean I’ve got it? If it were carpal tunnel syndrome, I probably would not be feeling the blood vibration in my feet and legs too, huh?
After the Dx (that’s how it’s written in the doctor’s notes), still in disbelief, I was able to speak up, which was probably at the third appointment with the neurologist, whose personality was just starting to grow on me, I told her about the vibration. I described it as ‘that feeling you get in your hand when you touch a stereo speaker (1980’s sized) which is projecting loud music’. She giggled. The doctor giggled. I saw a sign of her actually being a human and not just a fact spouter. However, I had nothing to giggle about. Oh, yeah, ‘it always amazes me when my MS patients talk about the vibrations in their limbs–everyone describes it differently’. I backed up a bit, and told her it was more like being able to feel the blood rushing past the walls of my veins. She gave me a half-smile and told me that she had never heard it described that way before and it was probably right on target. Great. She commended me for my excellent description of an extremely annoying vibration in my body.
Could I have MS because my father has Parkinson’s? No. Doc says she’s not too worried about that and she is 100% confident with her Dx and that she is 90% sure I will get another (choose one:) flare, exacerbation, attack, episode, crisis, occurrence, bout, and/or anything else you can think of. Tells me my kids have a much greater chance (no odds given here) of getting Parkinson’s and that they only have a 2% to 5% chance of having MS. Whew! I was worried there for a moment. After hearing that, I feel so much more at ease now knowing how protected my children are. After that feeling, she asked which medication I decided on.
Her description of the medication: “Well, that’s just the thing…we don’t really know how it works, but it just does, so we use it.” The husband and I got a great laugh about that line when we got in the car.