Author Archives: Jen

Multiple Sclerosis and Denial/Acceptance

I have to tell you about my love affair with denial. Having had MS for a bunch of years now, I’ve tackled several ongoing issues that the disease has presented: fatigue, bladder and bowel problems, loss of balance, swallowing like a geriatric, and getting out the old cane for relapses when I walk like Charlie Chaplin. These issues I’ve come to accept with a little anguish and a bit of therapy, and it has been a long journey to acceptance since these symptoms often go into remission and try to convince me that I’m living without MS. I’ve also learned in the past few years that my emotional state with MS is never static: because the disease is so unpredictable, it is never safe for me to assume that I have my emotions completely figured out and that they will remain balanced indefinitely. It has taken me about three years to get the emotional situation to a point where I can accept the unknown and live my life not waiting for the other shoe to drop. Multiple sclerosis has a tendency to do this to people and as the disease progresses and more plans are thwarted, it becomes a bigger challenge to remain emotionally balanced. So I’ve recently learned the benefits of dealing with the emotional ramifications of MS with my divine social worker. I cannot express enough how much she’s kept me balanced and grounded on the continuous, unpredictable path that is MS. Just as MS continues, so does the fight to emotionally deal with it, and the methods are never permanent and can change with the course of the disease.

So here is my most recent lesson about denial, and probably one of the hardest to accept: I am trying to come to terms with the fact that I still need some sort of career to make me satisfied, but I have to let go of a choice that will not meet my needs. Anguish! MSers all know the dilemma of wisely picking and choosing what to do and what not to do. Being in relatively good shape despite my MS, I volunteer at my local library system a few short intervals a week. I love the damned library. I’ve worked there a couple of times in the past, but the multiple sclerosis always seems to get in the way. So now I am again in remission and my denial comes creeping back to me: maybe I can still get that library science degree and be a part-time librarian in a few years. Maybe this time it will be different. But the loads of books are still there, the lengthy walks to help patrons are still there, and the Family Medical Leave Act is still a difficult hurdle. So I have come to a practical, satisfying decision and I’m sticking to it: I love science and I want to continue going to school, so I’m going to take some entry-level psychology courses FOR ME. Not for a possible career, but if I continue taking the classes and a career develops, so be it. I love helping people and my local MS Society doesn’t have enough referrals for licensed professional counselors who deal with the issues of chronic illness (I’ve already inquired.) I don’t know if I will ever counsel anyone— on an hourly basis of course— but I took an intro psychology course a few years ago and loved it, and I’ve already gotten the required statistics class out of the way. One of my life goals is to earn a master’s degree. So who knows? Either way, I walk away fulfilled and with new knowledge that I can apply to everyday life. But I have to confess that the denial still lurks in the back of my mind and this choice is not without its pain.

MS Optic Nerve Attacks and Symptoms

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Optic neuritis, or the inflammation of the optic nerve that connects the eye to the brain, is the third most common type of multiple sclerosis relapse, making up approximately 17% of all attacks. 20% of all MSers experience this as their first acute attack. The optic nerve sends messages from the eye to the brain, describing visual clarity, color perception, and brightness. An attack of optic neuritis usually affects one eye. During an acute MS optic nerve attack (when the immune system attacks the myelin covering surrounding the optic nerve), the following symptoms may occur:

Blurred, murky vision: this can be intermittent or it can be a steady disruption of proper sight

Acute loss of vision: complete loss of vision in the affected eye may occur, and this too may fluctuate or remain steady during an attack

Eye pain: pain from the inflamed optic nerve can make moving the eye or even keeping the eye still very painful

Loss of or change in color vision: optic nerve inflammation can also cause a loss of or fluctuation in color clarity, making the visual field less vivid or “washed out”

The Afterglow of Joan’s Chat Room

Joan's Chat Room

Joan keeps rounding up more MSers at her chat room. Last night there were several Delawareans, the usual Taggie from Ohio (who is an absolute hoot), Denver Refashionista (she always likes to come on for a while), and Lisa from Brass and Ivory! Too funny. I think at one point we were talking about hamsters and guinea pigs? Wine and cruises were also discussed. Joan then had a good MS quiz about dealing with holiday stress. For someone who deals with pronounced fatigue, this is very important to her and others could definitely relate. The takeaway was that we MSers must care for ourselves first and put our feet down against unnecessary stress and demands. What a good topic for the evening. Thank you so much again, Joan. You’re the friendliest chat hostess and I’m sure everyone else can agree.

Joan’s next chat will be in early December. I wonder what the next topic will be?

New,Thinner Needle for Betaseron

I’ve been taking Betaseron (interferon beta-1b) for over three years and this is the only disease-modifying drug I’ve tried. Everyone is different, but for me this medication has worked well and has actually allowed me to recently go two years relapse-free instead of having the usual annual attack. So the news of a thinner needle excites me. Rebif has been known in the past to have the thinnest needle (29-gauge) out of the three subcutaneous injectable drugs–Copaxone, Betaseron, and Rebif. Now Betaseron’s 30-gauge needle (replacing the original 27-gauge one) is the thinnest on the market. For patients this means a possible decrease in skin surface reactions and pain. This same size needle is also used for pediatric injections and insulin treatments for diabetics.

Along with the thinner needles, a new autoinjector has been created. Old autoinjectors are not compatible with the new needles because they might not fully administer the entire dose of Betaseron.

New needles and autoinjectors are expected to be available this month (November 2008.) To find out more about switching to the 30-gauge needles, contact BETAPLUS (formerly MS Pathways) at 1-800-788-1467.

References:

Squiggy Has Multiple Sclerosis

Squiggy, Google Images

The story of David Lander, aka Squiggy, started in Brooklyn, NY, in 1947. As a teenager, Lander attended the High School of Performing Arts in Manhattan and later attended college at NYU and Carnegie Tech.

After moving to Hollywood, Lander did some minor roles and was eventually discovered because of his unique voice and humor as he worked for an answering service. He was then given a job on a radio program called “The Credibility Gap”, a humorous news show.

It was at this radio station that David Lander met his future “Laverne and Shirley” sidekick Michael McKean, and the two put together the team of Lenny and Squiggy. One night, Penny Marshall just happened to be listening to their live show, and had the two audition for her father’s new sitcom “Laverne and Shirley”, in which she was starring. Soon Lenny and Squiggy were nationally known.

I remember watching this show as a kid and just howling over some of the crazy antics. My favorite scenes were when Lenny and Squiggy, the two deranged neighbors, would pop in. Squiggy (did you know that his full name was Andrew “Squiggy” Squiggmann?) always appeared to be some clown with a hair-brained plan that involved the girls. Too funny.

Not so funny is the fact that in real life, David Lander began to experience symptoms of multiple sclerosis shortly after the show ended (1985.) During this time period, there wasn’t a lot to do about modifying the disease— disease modifiers didn’t hit the market until the 1990’s— and Lander’s doctor told him he had a good chance of ending up in a wheelchair.

David consulted with his wife and daughter about what to do. It was decided that he would keep silent in order to protect his career, since aging and being sickly were (and are) highly frowned upon in Hollywood. He went on to do voiceovers for a number of feature films and TV shows, including “A Bug’s Life”, “Jungle Cubs”, and “101 Dalmatians.” Appearing in several other films, he was featured as the baseball game announcer in “A League of Their Own.”
Landers and his family, Google Images
Finally in 1999, Lander publically announced that he had MS. He was not in a wheelchair, but he admitted that he suffered from some of the embarrassing social blunders that multiple sclerosis can cause, such as unsteady walking and dropping things. In 2000, he was named the national MS Society Ambassador of the Year for his work at promoting MS awareness. In the same year Lander published his autobiography Fall Down Laughing: How Squiggy Caught Multiple Sclerosis and Didn’t Tell Nobody.

David Lander’s biggest piece of advice to anyone with MS is to fight it. He strongly advocates the use of any of the disease-modifying drugs and says that when he gives himself an injection, he thinks, “Wow! Look what I did for me.” He still works closely with the Nat’l MS society to promote MS awareness.

Probably the most unique thing about David Lander is his current baseball career: “I use to own a team in Portland. I owned 5 percent of the Portland Beavers, but now I’m a scout for the Seattle Mariners,” he says.

References:

Melissa Etheridge Concert!

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Be back soon….I’m going to see Melissa Etheridge on Saturday night at The House of Blues. 18th row center! I’m really stoked because I’ve loved her since the early ’90’s when I first heard her single “Bring Me Some Water.” I like a lot of different styles of music, but I’m partial to good rock or blues with a guitar-playing singer. Plus I admire Melissa’s involvement with breast cancer research and prevention. Yahoooooo!

One more note: I welcomed a lot of chaos into my household during these past two weeks. We’ve had an ongoing, costly plumbing problem that is finally fixed and I just did about 9 loads of really ripe laundry. Yahooooooooo!

A Better, Second Steroid Experience

My initial experience with anxiety/depression and IV steroids, outlined in my last post, proved to be very traumatic and a life lesson in getting appropriate help. I hate steroids, but I did them again this past spring during my last relapse. I’m glad they’re there, and I now know how to better cope when taking them (I make sure to get a prescription for Klonopin, a sleep/anxiety medication which works best for me while on them.) A friend of a friend is going to school for her counseling degree and she mentioned the possible mania and deep depression that result from steroid use. I actually experienced a milder version of anxiety and sadness this time around, and I also found myself doing something quite odd (I recently told this same story to another MSer:)

The strangest thing I ever did on steroids was lust after, buy, and return a blowup baby pool. It was June and I couldn’t sleep, so I was up at 4 am with the cat and I couldn’t tear myself away from the Sears.com website. I was lusting for one of those shallow pools with a filter, so I kept going to the website and looking at it. Finally I decided to buy it. Then I anticipated its arrival. Every day waiting for that damned pool. Then it arrived and the filter kept breaking, so I deflated it, stuck the whole thing in a couple of black Hefty bags, and dumped them on the customer service desk at my local Sears. I really chewed them out. This whole pageantry lasted my entire steroid use (about 2 weeks.) I normalized (somewhat) after that.

I don’t know what to expect with my next steroid go-round (I’m assuming this year’s won’t be my last), but I have found that it is definitely a learning experience and being fully on an antidepressant before using them, as well as visiting regularly with my therapist, helped me tremendously this past June. Just like with the steroids, I’m not fond of taking antidepressants, but I’m so glad they’re available.

My Lowest Multiple Sclerosis Moment

When I started this site in June, my mom was so excited that I’d be able to talk freely about my MS and have the opportunity to write about whatever I wanted. But at the same time she questioned whether I would mention an event that caused her a lot of emotional pain. I replied that if the need came up, I would then make the decision of whether to disclose. I think to best explain why I pursue joy I now must tell you where I found myself one day (in absolute hell) and how I returned…

More than two years ago I was unemployed (I was let go from a part-time, low-stress library job that I absolutely loved, due to excessive MS absences), I was in the midst of a bad attack, and my husband’s teaching contract wasn’t being renewed so he would also be unemployed at the end of the month. I would go on my own COBRA insurance, but my parents would have to pay the expensive monthly premiums because we were completely broke and accumulating more and more debt.

I felt so absolutely broken and emotionally out of control. I would cry for hours on end in the bathroom. I was constantly pacing around my house (reading a book,of course) and I couldn’t sit still because all I could worry about was money, my husband’s career, and my own health. The steroids (IV solumedrol with a prednisone taper) were making me completely sleepless and therefore very nutty and irrational. My neurologist was on vacation and I didn’t have a caring, steady primary care physician. I had started Lexapro (an antidepressant through my neurologist) about two weeks before, but I wasn’t feeling its full effects yet. I was also advised by him to get to a psychiatrist to be properly evaluated and diagnosed. Easier said than done, with long waits to get initial appointments. I scheduled the earliest appointment I could get (in 4 weeks) and hoped for the best.

One day I was especially sleepless, crazed, and angry. My mom came over with some groceries because I had not left the house in about two weeks. She was trying to get me to eat as I had lost about 15 pounds in the course of about three weeks. I was doing my crazy pacing around the house and I felt such a complete disconnection with the outside world. It was as though my family and friends were surrounding me and saying stuff like “cheer up”, but I could only hear hushed sounds and see vague images. Much like Sylvia Plath’sThe Bell Jar. Just background stuff outside of a very lonely, very sad cocoon.

My mom tried to cheer me up, but as people who have suffered from extreme anxiety and depression know, it’s more than a matter of changing attitude. Sometimes therapy and medication are needed. I wanted so desperately to feel emotionally better. So I revealed to my mom that I was afraid I was going to hurt myself. I finally crouched down crying on my living room floor and shouted repeatedly,”I need HELP! I need HELP, I need HELP!” My mom quickly got on the telephone and called my neurologist’s office, asking the receptionist about getting me to a psychiatrist. She said in a quivering voice, “Please help us: my daugher is having a crisis and I don’t know what to do.”

The empathetic receptionist told us to head to the ER at the hospital where my neurologist is affiliated (about 30 minutes from my home.) So we got in the car and went. I was brought to the psychiatric section and evaluated by their skeleton crew— at this point it was well into the evening. A social worker came in and spoke to me and an angelic psychiatric nurse drew some blood and fed me. I was given a script for an additional antidepressant– phoned in by the shrink on call– and viewed as functional enough to leave and go home. Before I left the hospital I went to the ladies’ room and to my horror I looked in the mirror and had the most complete moment of disconnection in my life: I absolutely did not recognize the face looking back at me. I had swollen, purple eyelids and deep dark circles under my eyes. And I was rail thin. I will never forget that moment when I realized that MS was winning. And I vowed then that I would never let myself get so low again, no matter what it took.

I’d like to say that I felt much better when I woke up the next day, but the new antidepressant actually made me JUMPIER. Relief finally came in the form of an anti-anxiety pill: Klonopin prescribed by one of my neurologist’s partners. I was able to get about 6 hours of sleep at night and the nuttiness died down. I got in to see a psychiatrist for a lengthy and thorough evaluation (about 2 weeks later– a new practice), the original Lexapro started to kick in, and I began speaking with a social worker about my anxiety. I still see this woman regularly, although I’ve changed psychiatrists due to my health insurance.

So this is why I am so adamant about grasping joy. I do what I can to keep from ever getting that low again. I will never let MS beat me, no matter what. And this is why I believe there is hope for everyone. There was hope for me at my lowest moment, and I am no different than you.

Review: Women Living with Multiple Sclerosis

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Women have a tendency to form close bonds with other women. It’s an intrinsic quality and it seems almost necessary for emotional survival. Men have their bonding methods (the Superbowl, horseshoes, golfing, and smoking cigars), but women naturally gravitate towards other women for feedback, inspiration, and support. It’s not surprising then that ladies with multiple sclerosis often find themselves in close-knit circles such as support groups, chat rooms, message boards, and blogging communities. One such online group forms the basis for the exceptionally heartwarming book Women Living with Multiple Sclerosis.

Written by professional journalist Judith Lynn Nichols, this book tracks the online camaraderie of 20+ women who formed their own email support group after meeting each other through a message board. Nichols tells of her own 30 year battle with MS and discusses how it affected her child rearing and her marriage. Her career as a reporter was also affected as her disease progressed, and she found solace and understanding with this group of tough MSers, dubbed the “Flutterbuds” due to members’ memory flutters.

The group discusses such topics as cognition issues, constipation, sexual challenges, the common “But you look so good statement”, disability income, and working with multiple sclerosis. The beauty of this book is that each topic comes with a multitude of opinions, personal experiences, and solutions. Together, the group supports and encourages those who need it. It is a testament to true, deep friendship.

This book actually came into my life before I had a good idea of what multiple sclerosis was all about. I was in a state of denial for some time, because I could get away with seeming “normal” for a number of years. Now I find this book comforting because it makes weird, scary symptoms acceptable and okay as these women share their experiences with all of them. Nothing is too strange or crazy among this tight clan and readers will feel included in their understanding and camaraderie.

PS: There is an excellent sequel to this book, Living Beyond Multiple Sclerosis, which continues the story of the “Flutterbuds” and tackles new MS topics.

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