When you have a chronic disease like Multiple Sclerosis there are just days when you have to question “Why me?” and wonder what lesson there is to learn from having to put up with a body that at best gets you through your days (with many modifications) and at worst finds you sitting in a chair hoping tomorrow will be better.
Now don’t get me wrong. I’m really not a complainer. I believe I have two choices when I get up in the morning; 1) cry about my disability, but that doesn’t get me anything but puffy eyes and a red face and neither look good on me or 2) be grateful for everything I can still do. Most days I choose option 2. (Because everyone deserves to have a short pity party now and again.) I’ve had this disease for 25 years and thank God and knock on wood, I’m still on my feet. It’s not pretty, but I’m still mobile. Which really brings me to the point of this blog.
I’m considering two new medications, Ampyra and Gilenya both of which are fairly new to the MS world and both are supposedly helpful for progressive MS. I haven’t been on medications for a long time because the side effects really were dibilitating and my quality of life was horrible. But anyway, I digress…
What I really wanted to mention in the middle of all this medical jargon, is the people I had the privilege of meeting. My first appointment had me at the opthamologist. The moment I walked into the office there was a positive energy just snapping through the air. The ladies behind the desk were smiling and friendly and an absolute joy to talk with. You could just tell they loved their job. And the doc … well, his caring smile and pleasant manner were infectious. And I told them all that. I’ve been in a lot of doctor’s offices over the years, but I would love to have just sat in the waiting room with a cup of tea and chatted and visited with them for the morning, they were that wonderful.
And of course I started chatting about the new medications for my MS. which brought a couple of people drifting into the office. Turns out one of the ladies has a sister-in-law my age who’s MS has progressed to he point of being bed-ridden. She is just heartsick. We talked quite awhile about the hardship of being a family member to an MS patient. I often think it’s harder because they want so desperately to do something for the person they love…and there’s nothing they can do except love them.
I followed that up with a trip to the hospital for some very benign tests. The lady who conducted my ECG asked me about the book I was reading, one of Jessica Andersen’s Nightkeeper series. Which then got into a discussion of genres and of course I told her I was an author. Pulled out a bookmark and gave it to her. Next thing I knew 5 people were standing in the doorway after my test wanting to meet the author (who I assured them is faaaaar from famous) and asking about my mother-approved-stripper-pen name. (If you haven’t heard that story, ask me some time, it’s pretty funny.) Anyway, it was fun to chat with them all.
Then off to the lab to have FIVE vials of blood drawn! (And not a sexy vampire around.) It turns out the young lady coaxing blood from tiny, spaghetti veins has a sister with MS. A nurse in the hospital upstairs and she tried some medications, but refuses to continue, guess why … the side effects. This young lady was sad and worried. We talked for a good 15 or 20 minutes about MS and medications and her sister’s decisions. It was wonderful to offer my perspective.
So I don’t know. I sometimes wonder if that’s my mission in life…to offer support and encouragement to both people living with MS and family members who are worried and afraid. As a teacher at heart it’s so easy for me to share/educate/listen. In this crazy world of chronic disease, I’d like to think there’s a reason I’m going through all of this. Maybe my next career will be as a motivational speaker. Who knows? I’m game.
I’m a writer
I’m a wife and mother
I’m the middle child of five
I’m a college graduate
I have many dimensions, but in the end I’m still Nina. A woman doing her best to live with multiple sclerosis. At its base, it causes plaques in your brain that block messages traveling along your nerves. This means it affects everyone just a little differently depending on what parts of the brain have these lesions.
And me? Well, my neurologist can’t quite figure out why my disease is so disabling when all the MRI’s show little damage to the nerve paths in my brain. *shrug* It is what it is and despite my best efforts, I can’t change it.
And the fact is, I live my life full out and try not to let too many things slow me down. I manage my MS with my doctors. What I DON’T do is spend hours upon hours on the internet looking for the latest and greatest drugs or possible therapies for MS. I don’t have time. I’m too busy living my life. But that doesn’t stop people who know me from doing that very thing. I can’t tell you how many times someone gives me an article printed from some magazine or internet article and suggested I give a new therapy a try. (One was tapping various parts of my body at regular intervals during the day … umm, yeah, they skipped all the fun parts.)
When I decline, often times they get very upset. I’ve had responses like “I would have thought a scientist would be interested in something like this” or “I can’t believe a college educated person wouldn’t pay closer attention to the latest break throughs”. Wai…whaa? I’ve lived with this disease over 20 years. I’ve tried enough medications and homeopathic remedies to realize–none of them worked for me. And that’s me. I don’t suggest to other people how they should manage their disease. It’s none of my business. But the bottom line is that I’m tired. I’m tired of getting my hopes up on another supposed cure only to be let down. I’m tired of medications that make me sicker than the MS. I’m tired of people thinking they know what’s better for me than I know myself.
I know people are doing it because they care. But really, do they have the right to be upset because I choose not to try their newest and greatest thing proclaiming cures and health benefits that they’ve just discovered? I’m not sure what part of the human psyche makes us react that way, but I’m really tired of having to defend myself. Because in the end, this really is, all about me!
So has this happened to you? Maybe not with an illness, but perhaps a career choice or a life path you’ve chosen? I’d love to know I’m not the only one out here having to juggle people’s feelings.
NOTE: April is MS month. Research continues to bring us closer to a cure for this debiliting disease. Please find an MS Walk or Bike-a-thon and sponsor a walker/rider. I’m so excited that this year, for the first time since I was a kid, I’m “walking” in a fundraiser with my electric wheelchair. My family is sponsoring a team. I wubs them.
I’m a little homesick. I’ve spent this week bumping around the blogosphere visiting with other authors and chatting about Maid for Master. But even I’m a little tired and looking for a break. I’ve got three more stops. Check THIS POST and find out what stops I have left. This coming Wednesday I’ll choose a person at random from all those who commented on the various blog posts to win a box full of goodies including my book Healer’s Garden.
On the writing front I’ve had a really good week. I did shoot something off to my editor at Ellora’s Cave and should be hearing something in a few weeks. In the mean time my muse and I have come to an understanding. She understands I NEED her to stay put and play with me and I’ve come to understand she needs more hot showers, space heaters, and wine to survive this crazy-cold and snowy month. The bribes seem to be working. We’ve been a finely tuned machine this week cranky out the words. (Let’s hope we can keep up that New Year’s resolution through the end of the month.)
On a personal front … I am jumping up and down and screaming with joy. Most of you know I have multiple sclerosis. I can walk around my home, but it is becoming increasingly difficult for me to get around malls or hotels. For years, and I do mean years, my neurologist and I have been trying to convince my insurance company that a motorized wheelchair would improve my life significantly. Finally, FINALLY a chair arrived at my door step on Friday. There’s still the question of how we’re going to transport it, but expect to see me and my sexy new wheels and writer’s conferences this year. I CAN NOT wait. It’ll save me from all kinds of difficulties that have kept me home. Yay!
So what are you up to this weekend? Any special plans?
So this week is the yearly convention of Romance Writers of America. It’s a HUGE convention of authors, publishers, agents and editors. In the four years I’ve been writing I haven’t been to one of these shindigs. Of course, the first couple of years I didn’t even know about RWA … still.
Since the convention is in Washington DC, my side of the coast, there are five or six writers traveling from Maine, a few of them planning a wild roadtrip complete with blue drinks *wink* (Susan Vaughan, Teagan Oliver, Brenna Ash, Delsora Lowe, Diane Amos, Terri Linscott, and Elaina Huntley). And another of my dear friends Emma Sanders is traveling all the way from Texas with her hubster! I’m just bummed I’m not one of them … waaaaaa. I’ll be enjoying the festivities vicariously through their tweets, emails and pics on FaceBook.
As much as I’d like to be there, I’m gonna let you in on a little secret. The whole thing scares the beejeebers out of me! Seriously. Nah, it’s not the crowds or the big names. I’d love all that stuff. It’s the SIZE of it. And of course in Washington it’s all about the walking. Every tour, every workshop, you need to schlepp. And sometimes I just can’t do that stuff.
My MS has progressed to the point where I’m right in the middle of needing a wheelchair, but not quite disabled enough to need it all the time. *sigh* It’s a pain in the butt worrying about whether my legs will last long enough to get from one place to another. The hubster is awesome. We’ve kind of got the whole moving me from one place to another down pat. But since he’s not a writer, the thought of hanging with hundreds of romance authors doesn’t really do much for him. LOL!
So this year I’m sitting on the sidelines. 🙁 But I’m not twiddling my thumbs! Over at SIX SEXY SIRENS we’re (Madison Blake, Paris Brandon, Cerise Deland, Fran Lee, Afton Locke) offering an e-book mini workshop E-publishing from Query to Final Edits and Beyond! We’re sharing our personal stories and sharing the process of writing from start to … (well, I can’t say finish, because a writer’s work is never done!) the end of a project.
I hope you’ll join us this week. And for all of you at RWA Nationals in Washington … lift a blue drink for me!
The month of March is “Multiple Sclerosis Awareness Month”. This past week was a kick off with lots of bike rides and fund raisers. I saw in NY where people walked up 65 flights of stairs to raise money for MS research — Go people!
As a person afflicted with this debilitating disease, I would be remiss if I didn’t talk about it on my blog. I don’t talk about it much, though it is a HUGE part of who I am. You can’t live with something that affects every part of your life and not have it be wrapped around your personality. Don’t misunderstand … I am NOT my disease, but just like my obnoxious laugh and incessant talking … it’s an integral part of me that I have learned to embrace.
A few facts:
* Most people experience their first symptoms of MS between the ages of 20 and 40 (I was 22.)
* No one knows exactly how many people are afflicted with MS in the US, but it is estimated between 250,000 and 350,000 (This estimates nearly 200 cases are diagnosed each week.)
* MS is 5 times more likely to be found in populations in temperate regions as opposed to tropical climates. (And Maine has an extremely high percentage of people living with this disease.)
* There is no definitive test to determine if someone has MS. But symptoms and MRIs lead to a fairly accurate diagnosis.
* There is no cure for MS. The disease follows no formulaic method of attacking the nervous system. There are however new drugs that drastically reduce the amount of nerve damage and subsequent disability.
A diagnosis of MS is scary. You can’t repair it with surgery, battle it with chemotherapy or delay its effects with exercise. I think it’s the unknown that is most frightening for the newly diagnosed. But I’m here to say … it’s not a death sentence. I have lived with this disease for 25 years. And though I had to give up my teaching career five years ago, I am still mobile (though my gait looks really awkward especially when I’m tired). I don’t have a care giver and my mind is as sharp as ever. And I am not clinically depressed! I still do the laundry (ick!) and the dusting (double ick!) and make dinner for the family (though I am a terrible cook and they wish I wouldn’t).
There are different types of MS. The most common being relapsing/remitting where people experience an exacerbation that causes some type of short-term disability such as problems with sight or temporary paralysis followed by a complete remission only to return later after a period of stability. “Interferon” drug therapy is being used on people with this type of MS to slow or stop the number of exacerbations.
Primary progressive MS is a form where a person experiences a gradual decline of function with no remissions. This is a very aggressive form of multiple sclerosis.
And the third, which is what I have, secondary progressive MS which begins as relapsing/remitting followed by progressive MS with decline in function without any acute attacks. It’s thrown me into the unknown and put me on shaky ground, but nothing I can’t handle. (I don’t mean to sound all Pollyanna on you, but I really do try to remain positive about my life. I think it helps … heck, it certainly can’t hurt!)
President Obama this week is opening the doors to stem-cell research of adult cells. Boo-Yah! I have not doubt that among the many things this forward step in medical research will bring us … is a cure for MS. I’m hanging my hat on that!
I’m an open book about my disease. It doesn’t embarrass me to talk about it and actually, as a teacher, I love to educate people. Especially the newly diagnosed. I raised three babies to young adulthood and I’m looking forward to holding my grandbabies. (Though not for a veeeery long time children. A veeeery long time!) I might not be able to stand in front of a classroom of 2nd graders and teach them about birds, but I can sit at my computer and weave wondrous worlds of fantasy for readers to enjoy. There are days my hands give out on me and my fingers seize and I can’t type, but this doesn’t happen very often especially if I split up my writing time. I still enjoy life and look forward to lots of interesting adventures. (Nothing’s slowed down that dare-devil spirit in me!) I am happy to chat with you about this disease. Ask away!