…and I feel great. I know there are people reading this who think I should be on my meds, but I have to say, I have felt so much better since stopping the injections. I still ignore the fact that I have MS, but I think that’s better than dwelling on it and letting the disease consume my life.
My ankle pain has gone away, and I’m not injecting myself daily with a chemical compound that lowers my immune system, making me prone to even worse illnesses than multiple sclerosis.
I believe that life is what you make it today. It’s always the mindset I have lived by – to live life in the moment – so why let this stupid diagnosis change that? I won’t.
I believe we can overcome anything with the right atitude. This is just one more of those examples in my life.
I haven’t posted a blog entry in quite some time. Here’s why: I’ve been
avoiding…ignoring my diagnosis. Other than the overwhelming feeling of fatigue that I push through every day, I feel fine. That may sound silly to you, but singular fatigue versus the numbness, pain and fatigue combo I’ve experienced since October 1, 2009 is the upswing to whatever is going on with my body.
Since visiting a homeopathic doctor in my area, my left ankle and leg pain is almost gone. He gave me something called Pesticide Blocker to cleanse my body of the pesticides I was exposed to year after year while living on a farm and working in my parents’ farm supply store. I did a lot of reading online, and everything I found on this endless resource of information we call the internet says the same thing about pesticides: once they’re in your system, they’re pretty darned hard to get out.
Since taking this supplement, which is really a high dose of Thiamine, the change in my physical feelings, other than the desire to stay in bed all day, have been incredible. I’m working out again. I’m more focused than ever, and when I get up in the morning to tackle the day, the pain that once nearly sent me crumpling to the floor is gone. My ankle doesn’t “fail” any more. I’ll take that.
Still, I’m exhausted. Maybe it’s because of my schedule – full-time job, graduate school and teaching two courses a semester at a nearby university. I’m not even drinking as much as I used to. So what’s going on? Why did I come home from a weekend trip with my boyfriend on Sunday, lay down for a nap at 3pm and not wake up until 9pm? And why was I so eager to go back to sleep by 11pm and not so eager to get up at 7am today?
No matter how much I ignore the fact that I have MS, this unquenchable thirst for sleep reminds me every day that something is wrong. I’ve had almost every other part of my body checked for problems – mostly in an effort to debunk my neurologists. I haven’t given myself an injection of Copaxone in over two months in hopes the real problem will surface. No matter how rational an argument my dear partner makes to me, I still struggle with accepting my diagnosis.
Two years and three months after my diagnosis, I have no new lesions on my brain. Yet, I’ve had an “attack”. So where are the lesions? Why aren’t they showing up on my new MRI? Is my immune system just attacking the same spots on my brain over and over? What are the chances of that? And if they were “repeat offenders”, wouldn’t those old lesions show up as active?
I’ve spent my entire adult life as a journalist – digging to get to the truth of every situation, whether at work or in life. But this time, I just can’t seem to get to the bottom of what’s going on – at least, not in my mind. I just can’t bring myself to believe that I have MS. And that’s foolish, because I know that, until I accept what three different neurologists have told me, I’m not going to beat this.
If you’re newly diagnosed, and you are reading this, know that the uncertainty of this disease does not go away. At least, it has not for me.
It’s a little after 1:00 p.m., and I’ve just finished talking with the head neurologist on the floor. She’s thrilled with the progress I’ve shown with the first steroid treatment. However, the headache lingers, and I’ve found new friends.
It seems the Copaxone lowered my immune system, so my usually tough as nails antibodies did not fight off the urinary tract infection forming in my body. It also caused a perfect habitat for yeast in my body (not to gross anyone out, but yeast is not just related to “that” area.) When I started the steroids, it ramped up cell production in my body – muscle cells, the cells necessary for reparation to my eye, and yep, bacterial UTI and fungal yeast cells. The steroids also cause my blood sugar to spike. So, I have gone from being on painkillers for my headache and steroids for the optic damage to a laundry list of drugs. Oral antibiotics, anti-fungal pills, steroids, my daily copaxone injection and now an insulin shot. Oy vey!
There is good news. Because I’ve done so well with the steroids, I may get to go home after treatment number two tonight. A home health nurse would come to my house tomorrow and hang the IV bag for me. My port would stay in until that third treatment is finished. After that, I will do a step-down steroid treatment, using oral prednisone to gradually decrease the steroids in my body.
For my newly developed, non-neurological symptoms, I would see my primary doctor asap. But I can’t make an appointment with him until I know I’m getting out of here tonight. Nothing’s ever easy.
I did have two wonderful visits today. One from someone who has become a dear friend quickly, who is also diagnosed with MS. This is one awesome chick who I admire – for her knowledge of the illness and her refusal to give into it. I draw my strength from her.
The second visit was from Oscar the Therapy Dog. He is such a cutie! (And much better behaved than my dogs!) His handler sat, and we talked for about 45 minutes. A delightful lady, an oncology nurse, who also volunteers her time visiting patients with her trained pup. Ends up, we know many of the same people. Philadelphia really can be a small place!
So, an upswing to my day that will hopefully have me sleeping in my own comfy bed tonight, with my own snuggly pups and kittens. All I have to do is promise to rest and to limit my sugar intake until I’m off the IV steroids. Doable.
I finally got to sleep around 1:00 a.m. on Tuesday night / Wednesday morning. I turned on iTunes, pulled up the library and popped in my earbuds. I pushed them in as deep as they would go, probably not the best advice for your auditory future, but desperation overcame me.
The constant beep, beep, cough from the monitoring equipment and other patients is enough to drive you crazy – with or without medically induced raging hormones. My nurse likened my current steroid treatment by saying, “It’s like being on your period multiplied by a hundred times.” Oh goodie.
And as if that isn’t enough to make any woman say, wow, this is some crazy stuff, and make any man realize it’s in his best interest to steer clear for a few days, add to the 100-times PMS to the obvious confusion over our time zone designation. Maybe I’m the one confused. But the hospital should really inform you, upon walking through the metal detectors, the sliding glass ER doors and over the threshold into the wing of the patient holding rooms, that we have just stepped into the HUP Timezone.
Forget Eastern Standard Time. Not only was waking up to the nurses’ hourly checks on my roommate in my semi-private room disruptive to my futile attempts at getting sleep, the 4:40 a.m. visit from my nurse racked up more tick-tock on my sleep debt. I mean, I’m glad she came in to give me a single anti-biotic pill and whisper, “You have a urinary tract infection and low grade fever. This will help.” Oh, thank God! Because that UTI just couldn’t wait until 7:00 a.m. And five minutes later, the lady from the labs came in for blood. ”Let’s not use your port. Let’s make a new injection.” That actually doesn’t bother me any more. I am so used to needles, it is hard to believe I am the same girl who once thrust a nurse’s hand off my rear-end after the needle was already in. I was young, but I remember the doctor’s visit and how angry the nurse was that I struck her.
After swallowing the UTI meds and giving up a few more vials of my blood, I put my earbuds back on and turned out the light. But it was too late. I was wide awake and the beeping grew louder “next door”. So, I sit here, and do my favorite things in life: write, listen to music and read.
Now let’s get rid of this headache today.
Staying upbeat and positive when you’re diagnosed with a chronic auto-immune disorder can be tough. Today’s especially a test of my cheery outlook on life. Not only am I in the hospital for the next five days, but an ample dose of high-powered steroids squash any attempts at being upbeat.
I have told only a handful of people I am here. I don’t want anyone to worry about me. Their worry will, in turn, stress me out. I just don’t deal well with others fluttering around me to make sure I’m okay. I prefer to do the worrying.
I am already annoyed by the inconvenience of this hospital stay. I am missing each of my final days of work before a two week vacation begins. I still need to pack and be ready for my flight to Germany on Monday. And most importantly, I have been planning my boyfriend’s 40th birthday party for months. A lot of months. I know things will still come together because my amazing friends will help me. To those friends, if you are reading this, thank you. I love each of you.
So, why am I here, at the hospital? Yesterday, I awoke to an indescribable headache. My Facebook status update described it the best I could: Did someone break into my room overnight and beat me in the head with a hammer? Nothing I did or took eased the hurt – for over 12 hours. When I woke up this morning, the headache was still there, in hospital terms, down from a 7 or 8 to a 3 or 4. A 3 or 4 still hurts – quite a bit.
On my drive into work this morning, I began to see everything out of the corner of my left eye fade to black. I watched as a cloud of thick, black cloaked my peripheral vision, creating an effect I can only liken to a Philadelphia carriage horse, wearing blinders to block distractions from passing tourists. By the time I got to work, the black cloud covered half my left eye. I could still see, but there was clearly something wrong, and my fear turned from my headache, which I knew I could endure until it subsided, to my vision. Headache goes away, that’s good. Vision goes away, that’s bad. Real bad.
I called my neurologist. She’s on vacation. Figures. Just my luck. But I was happily surprised when another neurologist from the hospital called me back – within five minutes. Surprised and concerned. They never call back that quickly. This must be serious, I thought. The doctor told me to get to the emergency room to be evaluated and to be ready for admission. So, I left work in the burbs and headed to the hospital in the city. When I walked into the emergency room lobby at 10:30 a.m., I looked around and saw only three people. This just doesn’t happen in a Philly ER. A nurse called me back right away, and the speed of the process relieved me. Then I sat, slept, sat, played Scrabble, and sat some more. My skull is throbbing, and nothing is alleviating the pain – not the prescription strength motrin, not the IV toradol, and certainly not the Tylenol with codeine.
Doctors finally admitted me around 6:00 p.m., the focus now turned from the axe that’s clearly stuck in the top of my head, to my faded vision. The nurse pumped in the first round of high-dose steroids. It’s one of five, that will last over a five day period. It’s Tuesday. You do the math. That puts day five of treatment on…yep, Saturday. Jim’s birthday party. Great. For an independent person who prefers to do everything herself, I’m going to really have to rely on some folks in a big way this time. Thanks, MS. You just suck.
This is my first time on the steroid treatment. I’ve heard about it, the possible side effects. So far, I don’t see purple monsters in my room. But even without the hallucinations, which evidently effect ‘older’ patients than those my age, I still feel the emotions nearly burst from my body – especially my mouth.
I’m in a semi-private room. That’s the hospital’s way of saying, you’re in the hospital, there is NO privacy. I’m in the locked stroke unit. (Evidently, many stroke patients wander. Unlocked doors could mean bad news – for the patient and the hospital.) The woman next to me, a precious older lady, has, from my best guess, suffered a stroke. She’s having trouble communicating – she can’t pronounce her words in any intelligible form. But that’s not annoying to me (the steroids haven’t shrunk my heart!). It’s her Snookie-sounding daughter who, with the right intentions, I’m sure, is talking so loudly at her mom. The lady didn’t lose her hearing. She just can’t speak clearly. And that curtain between your half of the room and mine, well, it’s not sound proof. Headache just got worse.
As I’m lying in my bed, a big man comes into the room wearing scrubs. He’s here to fix my table that’s stuck, and I look at him, I mean, it WAS me looking at him. But what I said did not sound like me. I said, “I’m going to shoot myself. She is so loud. I have a headache. I can’t take this. I need earplugs. And I want a private room.” Keep in mind, if I could hear her, she could surely hear me. The man laughed, said, “Private rooms are $500 a night. But I’ll be right back.” Within a minute, he WAS back, and with him, he had a handful of tiny, white and blue boxes. He said, “Just in case you need more. We don’t want you shooting yourself.” and he let out a deep laugh, almost a giggle. I opened one of the boxes, and there they were – bright yellow foam earplugs. God bless you, big scrubs-wearing man. I love you.
I’ve always fallen in love too fast. The earplugs didn’t work. Now all I could hear was a somewhat muffled Snookie-voice talking on the phone and then to her mom and then to the nurses. This time, I showed some restraint. I pulled out my laptop, opened iTunes, popped in the jack to my earbuds and cranked up Blink182. As loud as it would go.
I put a pillow over my head (I couldn’t reach the light, and light seems to make that axe wedge its way even deeper into my brain). I drifted off to sleep. I awoke to Jim tapping my arm, and I jumped. I had slept through someone coming in and taking my food tray off my adjustable table. Unhappy about losing a pint of milk and lemony iced tea, I pouted about the disappearance of my tray. Then, I started to cry.
It wasn’t just the tray. Everything hinges on these next few days. I want Jim to have the most incredible birthday ever so he’ll get over the silly idea that turning 40 holds some magical dilemma making you question where your life has taken you – and where it hasn’t. He’s the smartest, most handsome and simply awesome person I know. I cannot imagine a life without him in it. Period.
And work. I leave for Germany on August 22nd. This was my week to tie up loose ends in the Marketing Department. Already down a staffer and in the middle of a website rollout, we are uber busy. I didn’t even bring my work laptop with me, or I could have worked on brochure layouts while here for five days.
And home – I just want to be there. I have grown to love my house in the burbs. At first, when I found myself there alone so many days, I hated it. I could not wait to get out of its big, hunter green door every morning. And I did everything to not come home until it was time to sleep. But now, I find peace just being inside that door. The dogs and cats who run to see me, the hardwood floors that shine a bright hello as I scurry inside, the key rack where I always put my keys because, any other drop off location, and I’ll lose them. Everything about that house (except the yard work) is happy to me. It is home – so much unlike any home I ever had back in North Carolina. Happy, content, peaceful. What home should be.
Between the party details, the business matters at work and just missing my own bed, I grew amazingly grumpy and then cried. Jim would argue that’s normal behavior from me. But today, it was uncontrollable. It was as if I was outside my body, looking down, saying, “Be nice. Don’t stress. It’s silly to cry because you may not get a mani pedi before your trip.” Still, my psche didn’t listen.
I’m settling down now, emotionally at least. I can’t sleep. It’s 12:20 a.m., and I’m as wide awake as if I’d just made my second trip through the Starbucks line. I dread tomorrow, when I start this entire process over again. I think I’d rather see purple people in my room than to feel so out of control of my emotions.
I love the hot weather. All winter long, I dream of the days of summer, when the sun shines on my face, radiating heat onto my skin. But over the past year, I have noticed a significant change in my body’s ability to deal with the heat.
When I was a teenager, I spent my summers at Myrtle Beach in South Carolina. All day long, I’d lie in the sun, swim in the ocean and let the sun’s rays dry my skin and hair. I’d literally bake in the heat, and I loved it. I applied sunscreen often and liberally to protect my tender, white skin from burning. Little did I know that by the age of 37, I would no longer be worried about the sun’s affect on my skin. Instead, it’s the heat that sucks the life right out of me.
It’s a vicious cycle. I love hot weather, the pool and the beach. But I’ve come to the sad realization that heat causes my body to enter a state of exhaustion. That leads to fatigue lasting for days. And after days barely able to pull my body from bed, you got it – the depression kicks in.
I have always been a person on the go, never slowing down. Rest is boring to me; watching television makes me antsy; and the thought of taking a nap? Shudder. When I first felt the heat related fatigue often linked with MS, I thought it had to be all in my head. I had always loved the hot weather. I vacationed in hot climates all the time. Hiking in Hawaii for twelve hours straight had no effect on me back in 2005. An entire day on the beaches of Punta Cana had proven relaxing, not uncomfortable. Hot yoga was an incredible energy booster for me. What could have possibly happened to change my body’s clear love for above 90 degree temperatures? MS happened.
According to the National MS Society, many people diagnosed with multiple sclerosis see their symptoms reappear or get worse during hot or humid conditions. And it’s not just the weather that effects them. A fever, increased body heat from exercise and even hot showers can cause symptoms to reemerge. Experts say the reemergence can happen even with a quarter to a half a degree change in body temperature. The reason? Frayed nerve endings have a tougher time conducting electrical impulses as the body heats up. (Source: http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/exacerbations/heattemperature-sensitivity/index.aspx)
The good news? These heat-related symptoms are not permanent. They often go away when the body temperature cools. I have a girlfriend who also has MS. She takes what she calls, “An MS Shower”, when she starts to feel the effects of heat on her body. She turns the water as cold as possible and jumps in the shower.
I have to say, it works. Last summer, I was trying to save cash by cutting my own lawn. After the first couple trimmings, I realized the hour-long job in the heat was just too much for my body. The first time I cut the grass, I was left too exhausted to even get out of bed for two days. I felt like I had the flu, and the numbness in my left leg from my first MS attack came back. Eventually, I felt better. The second time I attempted to cut the grass, I felt the same effects from the heat. As soon as I was finished with the lawn, I took an “MS Shower”. It wasn’t easy, getting in at first. But after being under the icy cold water for a few seconds, it felt amazing. I could feel my body temperature decreasing, and I did not have any of the symptoms I had experienced before.
The National MS Society shares some other great tips on ow to beat the heat. Some are no-brainers (pardon the expression), like “Stay in an air-conditioned environment during periods of extreme heat and humidity.”. If it were only that easy! But who wants to be trapped in the house all day because it’s over 80 degrees outside? Your life doesn’t have to stop just because you have MS and it’s a long, hot summer. And you don’t have to move to Alaska to feel 100%. Check out these tips to make sure your body stays happy and healthy during warm weather.
And remember, life is too darn spectacular to ever give in to your disease. Treat it as you would your worst enemy – keep it close, knowing what feeds it and what fights it. And never give up on the fight. YOUR life, love and happiness are all worth it.
My topic for this blog will be Multiple Sclerosis. Wow, that’s broad, isn’t it? Let’s narrow it down. I will write about MS, the “wham out of nowhere” effect this auto immune disease has on people, the nonchalant way neurologists inform bewildered patients and the long search for answers.
What gives me the authority to write on this topic? You know by now I have MS. What you don’t know is that I was alone in the hospital on October 1, 2009 when the doctor broke the news. Alone, except for a stranger in the room’s second bed who picked up her IVs, pried her own sick body off the white sheet draped vinyl mattress and struggled over to give me a hug of reassurance.
I also went through the most terrifying procedure I’ve ever experienced during my diagnosis: a spinal tap. Trembling uncontrollably, my usually brave psyche melted upon the thought of a needle entering my spinal cord. The doctor told me to be completely still. Impossible when you are gripped with fear, knowing one wrong move could leave you paralyzed. My roommate was there, holding my hand as if I were a five year old. I felt like one. The doctor told me the needle was in. Not too bad, I thought. Then, I heard a shrill screech. Half a second passed before I realized the sound was coming from my mouth. My right leg flailed straight out uncontrollably. She said she hit a nerve. I thought, no shit. The needle was out, but not because the procedure was finished. She had to start over, and she was chatty in the process. I was in no mood to talk, and I did not appreciate her comparison of spinal fluid extraction to tapping a maple tree for syrup.
And then there are the post diagnosis questions, many of them still unanswered. The scariest: when will I suffer another exacerbation? For months, I was afraid to sleep, afraid I would awaken to a dead limb, the inability to speak or blindness. For the first time in my life, my spirit was shattered. I learned what depression felt like. Within a few months, I went to two different counselors, joined an MS chat room and visited an in person support group. Still, the most answers I have received come from that yellow and black book we have all seen in bookstores. They sell them for computer systems, weight loss, and yes, there is an MS for Dummies. I used to make fun of these books, but I quickly learned this was the most clear and concise resource I could find. It didn’t answer all of my questions, but it shed light on some terrifying topics and helped me see the cloaked signs I had missed for so many years.
It turns out, I’ve always had a super hero immune system. It’s why I’ve never really been sick. Sure, I catch a cold every now and then (twice a year tops). I’ve even had the flu a couple times (in my life). I always thought my co-workers who used sick days were either taking a “mental health day” or were just lazy. Guess what? They were really sick! I was the exception. My immune system, as I learned in MS for Dummies, is super-charged. The same antibodies that make me a modern day infection fighting heroine are so strong, they break through a barrier in my brain and attack nerve endings. Depending on the location of the attack, I could lose any of my abilities. Walking, talking, seeing, hearing – all are dependent on those antibodies staying away from my brain. So now I am prescribed a daily shot to suppress my immune system.
Despite the promising studies surrounding my medication, I hate the injections. They are a daily reminder of my frailty, and they chip away at my emotional strength. I skip them – a lot. I detest the daily sting similar to that of an angry hornet. I hate the itchy lumps that linger for weeks. And I cannot stand the thought of injecting a chemical compound into my body.
I am, by no means, an expert on MS. It is a disease I am learning about every day. Writing about it will help me better embrace the things I should be doing to stay ‘me’ – the on-the-go, super energetic, always smiling, fun-seeking person I am known as. I hope it will also help you in your quest for answers.
I put it off as the last thing I do before going to bed every night. It’s that much of a pain – not literally, but emotionally. I don’t even feel the needle any longer. Even the medicine going in doesn’t sting as much as it used to. I’ve grown so accustomed to it, I often wonder, will I still be such a wuss if I’m stung by a bee? When I was a child, I cried when stung. I’m not sure I’d even feel it today.
Despite my body’s physical adaptation to this daily regimen, my brain just has not come to accept it. Funny, my brain is the entire reason I do it. And it’s not like giving myself my shot is difficult. First, I choose my preferred injection site. I have eight spots to rotate among: the tops of my legs, in the fatty tissue above my quadricep muscles; the fat atop my triceps; either hip (a.k.a. butt); the area a hands distance to the left and right of my belly button.
Once I pick my spot, I run my first three fingers along the top of my skin, pressing into the flesh to find a lump-free area. This part isn’t always easy. The drug I inject causes scar tissue, and because I shoot up every day, I always have lumps. Shooting into a lump doesn’t hurt, but it causes the medicine to ooze back out of my body like a tiny leak in a water balloon.
Next, I wash my hands thoroughly – you know, sing the ABC song two times while you briskly rub your soap-filled hands together under hot water. Okay, I don’t sing the ABC song. My neurologist says I’m supposed to, though. It just seems a little silly to me. I’m not in kindergarten. I can figure out how long to wash my hands after practicing several times a day, every day of my life.
After washing my hands, I take out an alcohol swab. They come free with my shots. (What a bargain! The shots are $100 each. With 30 to 31 days in a month, you do the math. I’m damn lucky to have employer-paid health insurance.) These free alcohol swabs are tiny, but sting like a bitch if you don’t take time between swabbing and shooting. That’s why this step is so important at this point in the chain. I scrub my selected injection site with alcohol. This kills any germs that could go in with the needle later in the process. (Thus the sting like a bitch part. The needle will also shove the alcohol into my pierced skin if it doesn’t evaporate before the injection.)
Now I pick up a pre-packaged syringe and tear the wrapper back from the container like peeling the top off a yogurt container. I do both daily; both have become a mindless task. I’m supposed to hold the tiny glass syringe to the light to look for debris. I’ve never seen anything in there but a clear chemical (C25H45N5O13), but I should be more vigilant. I have become so accustom to this process, I often skip the inspection.
After, in theory, approving the drug for its purity, I place the syringe, needle covered with clear plastic, on the counter. Now it is time to prepare the injector gun. Unlike a glock or a revolver, you cock this gray, blue and red plastic device before loading it. Unscrewing the gray top of the gun from the blue bottom, I invert the thinner, bottom piece and shove it in – end first – into the slightly larger top. A clicking sound lets me know the gun is ready.
Now I place the bottom, blue part face down. At the tip of this section is a circular, red cap. I place this red cap firmly onto the counter. The bottom section of the gun extends upward, at a 90 degree angle from the counter. I pick up my shot and insert it needle first into the blue section until I hear a faint click.
Carefully screwing the gray and blue parts back together, I take special notice of the ‘trigger’. It’s actually a small button atop the device. I am careful not to touch this part as I reassemble my weapon, otherwise, the gun will prematurely fire, sending medicine shooting across the room. (Can you tell I’ve made this mistake before?)
Now I carefully pull the red cap off, releasing the plastic cover from the needle. I cannot see the thin, sharp piece of metal, but I know it’s there, and I dread the next part.
The two pieces of the gun, now joined as one, squeeze together, much like the top of a retractable ball point pen. Using one hand, I now pull the gray part downward with my thumb as my pinky finger lifts up the blue part. When the two pieces meet, I am ready to administer the medication.
Pressing the blue tip of the gun against my stomach, and still squeezing the two sections together, the alcohol has now evaporated. I take a deep breath and touch the button. The snap still makes me flinch. But surprisingly, I feel nothing until all of the medication is in. About 13 seconds later, the syringe is empty, and I start to feel the sting of a hornet. It makes my body draw inward before the pain dissipates. And sometimes, I can feel twinges of the sting for several minutes afterward.
But the shot is in, and all I have left to do is unscrew the two pieces, dump the empty syringe into my sharps box and reassemble the gun for tomorrow. It’s amazing how difficult this simple process has become. Some people claim to have been stung by a thousand bees and lived to tell about it. I’m on my way there.
Hi! My name is Michelle Bradsher, and I was diagnosed with Multiple Sclerosis on October 1, 2009. I am a former television news producer and current PR / Social Media learner. I say learner, because this awesome world of social media is constantly changing. For anyone to call themselves an expert would be ridiculous, at least I believe…but I digress.
I am starting this blog to help others diagnosed with MS find answers and talk to fellow patients on their own terms. If you are reading this, you are either one of my amazingly supportive friends or someone who is either diagnosed with or cares deeply for someone who has MS. I’ll be honest, being diagnosed with a lifelong autoimmune disorder stinks. The uncertainty the future holds is absolutely unfair. But it’s better than some of the other diagnoses out there. And isn’t everyone’s life uncertain? (Hey, it’s a positive day! I live on a roller coaster, too.)
Through this blog, I hope to pool together as many resources for you as possible. I hope to provide a sounding board for you – whether you have questions, want to compare symptoms and treatment methods or just when you want to let it all out. Why am I dedicating my time to this?
Full disclosure: I am starting this as a Master’s Project in my course of study in Interactive / Social Media at Quinnipiac University. I am also passionate about MS information. Why? Quite simply – because when I was diagnosed, I could not find the answers I was looking for. I still don’t have all the answers. I read every day about new treatments, debunked myths, gluten free diets, holistic treatments, brain angioplasty, shots, oral medications, symptoms, heat-related factors, stress triggers – the list is endless. And overwhelming.
Speaking of overwhelming…when I was diagnosed, I felt I had no where to go. I was not ready to make the drive to the nearest support group. I was scared to death of what I would find when I got there. People in wheelchairs, on crutches, gazing off into the distance with loss of cognitive abilities. It took me MONTHS to get up the courage to go to a support group, and I’m a pretty quick adapter. I overcome easily. Not this time. Not with this diagnosis.
I wish when I received the diagnosis, I had been better prepared for what lied ahead. Instead, my neurologist came into the room, said, “You have MS.”, lightly touched my leg as a gesture of support as I cried, and left the room. I went online, bought books, searched for chat rooms. What I found was that nearly everything written about MS was authored by neurologists, psychologists and the like. I’m a smart person, well-educated and well-read. Still, I didn’t know what the heck was going on with my brain. Everything I tried to read seemed to speak above me – in neurological terms. I did not go to med school. I was a journalism major. I was confused by every resource I picked up.
Even the chat rooms were sponsored by pharmaceutical companies and monitored by specific drug users, like Copaxone. The journalist in me knew that, while these chat rooms were filled with people just like me, all diagnosed with MS, the message was being monitored by specific drug makers. That didn’t seem all encompassing to me. Not to mention, I couldn’t see the person I was chatting with. I found myself envisioning each person in the chat room as being in a chair, lying in bed unable to get out or with some inability to speak verbally. Please, no offense to those of you who are affected by MS in those ways. I am sure you understand, more than anyone, the fears a person goes through when diagnosed.
I hope to use what I learned (or did not learn) through my initial diagnosis to provide you with a variety of resource options. Maybe a chat room is your preference. That’s great! I’ll provide links to various chat rooms for MS patients, caregivers and family members. Maybe you’re like me and you want to see the people you’re talking to – but you’re not quite ready to be in a room with those people, unable to easily escape when you are uncomfortable. I’ll set up skype sessions with other MS patients – so you can see for yourself that most of us live normal, happy lives without the use of physical assistance.
As MS Social grows, I hope to offer you a place to go to find answers; to seek comfort; to figure out that you’re not alone.
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Welcome to MS Social! We understand. We get it. We are here to help.