Monthly Archives: November 2008

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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