A few things are changing around here. For the past couple of years I’ve been (somewhat) satisfied with being a safe haus frau, writing from home, and having the occasional jaunt out during the week to volunteer or visit with family members/friends. Working from home has been a blessing in terms of keeping me employed part-time (I also receive Social Security benefits, which took 2 1/2 years of scanty employment, complete hardship, and tenacious interactions with the Social Security Administration to receive.) But now I need more. I need an outside, part-time career. For my own sanity.

I’m starting graduate school at the end of August. I’ll be doing an online distance ed Master’s of Social Work— MSW— program and it’ll take between 3 – 4 years, with clinical rotations, to complete. The clinical rotations will be separate from the classes, and they’ll require about 18 hours of in-person work a week. As the turtle, I’ll be very slowly and steadily taking this program one course at a time for 8-week increments pretty much year-round (I WILL get a little time off between 16-week semesters!)

At the same time, I am now making and will continue to make some needed changes within myself to be more than I currently am. Some important tweakings. How can I be of service to anyone if I have unaddressed issues of my own? So a more cohesive Jen. And two of the initial areas I’ll be addressing will be my inner and outer strengths. I’ve found a local yoga studio, the Center for Health and Healing, which will have me work the front desk on Thursdays from 9 – 3pm in exchange for unlimited free yoga classes and 1/2 price massages. It’s finally time to get out and do some yoga! I’m pretty excited and I think the 6-hour commitment each week will help me slowly build my outside work endurance (I’ve been maintaining about 8 hours of weekly sedentary volunteer work thus far.)

I believe in my mind, my heart, and in my soul that I can maintain about 12 – 20 hours of mostly sedentary work each week. No more long hours on my feet as an ultrasound tech. But this is fine with me, as I believe in my mind, my heart, and in my soul that I can be of service as a medical social worker, and now’s the time to begin this new chapter in my life.

Yoga job starts bright and early next Thursday morning…

What a great day yesterday! I ventured down to Delaware to meet Joan (from A Short in the Cord and Joan’s MS Chat Room), Lisa (from Brass and Ivory, MS Central, and The Carnival of MS Bloggers), and Sonia (one of Joan’s local MS buddies and a fellow chatter.)

Woo Hoo!!…… It was awesome to meet fellow MS writers and chatters in person, after nearly two years of online interactions. And we found that we had TONS to TALK ABOUT in person. Joan was a little concerned that we might have nothing to say when actually brought together in one room, but not so. We had lots of laughs, we shared more information, we learned more deeply about one another’s lives, and we also talked about NON-MS stuff!

An MS issue we did discuss: what did we feel were our greatest multiple sclerosis symptoms and did they greatly affect us? Joan and Sonia mentioned their stopped-in-their-tracks fatigue which altered both of their career paths. I mentioned my own embarrassing and VERY annoying bladder and bowel urgencies, and Lisa explained her right leg weakness and the compounding rheumatoid arthritis hand symptoms (although it was good to hear that her current RA med is helping BOTH of her conditions.)

We enjoyed food and some wine and we gazed at Joan’s adorable backyard with bird houses, feeders, and many visitors. Joan’s home actually backs to a water runoff area that has filled in since she moved there, giving her a serene small pond that she shares with other neighbors. SO COOL!…..We even met Joan’s husband Tedd and I got some better directions home, since I got thrown off course with MapQuest’s ambiguous information (SIGH…)

All in all: what a GREAT TIME!…. Thanks for such a splendid day, ladies, and I can’t wait to do it again soon. We hope to continue and make this a tradition, involving more MS ladies who’d like to gather and celebrate good food and good friendships and LIFE. We all ROCK n’ ROLL!……

I don’t have the desire to talk about MS today: I imagine a lot of patients go through such times when the disease is not in the foreground. I think people DO go through phases where the disease is raging and it is all-encompassing. Writing about it then becomes a source of release. Or it’s a new diagnosis and everything is a new discovery. Or patients have a more progressive variety and there are challenges to overcome and milestones to mark. Right now I fit into none of these latter categories. However, I have noticed that I never brought my personal MS story up to the present date, and so I’ll try to get up to speed and continue where I left off. Looks like about a year ago….

I pretty much found the attack of summer 2008 to be less severe than the attack of summer 2006. Thankfully. For some reason, I’ve only had full-blown, acute attacks since starting my disease-modifying med in 2005. I was on it regularly by 2006— after problems with the flu-like side-effects—and I have had a ceasing of small, vague attacks. The larger attacks have also become what I would call “watered down.” Thankfully. My MS is currently manageable and the attacks have become fewer with more time in between. Thankfully.

In the summer of 2008, I won my disability case. I have since picked myself back up and I’ve been volunteering at one of our county library branches for several hours a week, doing database entry for the system’s volunteer program and also processing used kids’ books for a literacy program with the county’s foster care program. This venture in particular makes my heart sing! I’ve also continued to be a library English conversation group leader for foreign-born patrons interested in bettering their conversation skills. I had to stop this for a while back in the spring of 2008, when I began to bite off more than I could chew. Thankfully I got back to it and it’s now been running since 2006. Love it and I love the patrons who remind me all the time how lucky we are to live in the U.S. (no matter the politics du jour.)

I’m now anticipating some volunteer work through our local hospital system….Just waiting for my paperwork and TB test results to come back. I like that the hospital treats volunteers with the thoroughness of actual employees. Good structure.

I’m also taking online classes through my local community college just for enjoyment. Psychology. I’m currently reading Dr. Carl Rogers’ On Becoming a Person, which tracks his thoughts on the Humanistic psychotherapy movement. I DO find it fascinating: I love to hear all sorts of takes on life and what makes it go round. Now I’m contemplating what to take in the spring. Possibly a graduate social work class. At Rutgers University. And I’ll leave the house to do it!

The freelance writing has been pretty good (although a little bumpy) this past year, but I’m grateful to be able to use one of my interests to make a little side income. Social Security Disability Insurance can be tough to live off of.

Notice this post is not so much about my multiple sclerosis, but what has developed in spite of it. The only event that marked this past year and reminded me COMPLETELY that the MS lurks in the background was a searing bladder infection in the beginning of this summer. Caused a faux exacerbation that originally felt like a full-blown attack. It wasn’t. Thankfully. So no small/vague or large/acute attacks now for almost a year and a half. My record is close to two years (between 2006 and 2008.) Now it’s autumn of 2009 and I’m about my baseline normal, which is manageable. I’m looking forward to the holidays and the arrival of oral medications in the spring of 2010. My neurologist, whom I trust with my life, has approved me for either of the first two coming out. We’ll see about insurance coverage at that time. I’m just ever-thankful that I am not only living but THRIVING with multiple sclerosis….. Sometimes it’s just the luck of the draw. And who knows why? But I feel the need to make the most of what I CAN control.

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.

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.

When it’s quiet and the dishes are all done, the plump cat is fed, the husband is napping, and I’m left with my thoughts, I realize that I feel…..well…..GOOD. Multiple sclerosis is pretty much a coin with unpredictable odds. Heads: you feel lousy and curse the world. Tails: you actually feel your personal best. Stories of struggling are much more common, since people need to reach out and find others’ support. But how many people announce that they have MS and they presently feel good?

I have two personal friends with multiple sclerosis. One has benign MS, and has very little day-to-day problems. The other one has a more progressive form. I am smack in the middle of both situations. I am moderate, and when I feel awful, I plunge to the depths of MS despair and rottenness. But when it remits, I am back to being a relatively functional person. Most of my symptoms remit, and those that don’t (bladder/bowel stuff, some fatigue, and left leg weakness) usually become manageable. I am currently in a position where I can relax a wee bit about money. My home is now my office. The monkey on my back has gotten off (probably to pester some other defenseless MSer.) When I speak to either of my MS friends, I tell them this and the one with mild MS is overjoyed, and the one with progressive MS is….. also overjoyed. They both want my personal happiness.

If you have MS and you are in remission, you’re having a great day, or you just want to celebrate yourself, then CELEBRATE! Your family and friends want your happiness. That’s why they love you so much. Now go tell everyone how good you feel.

The first steroid experience was a bit unsettling. I didn’t know what to expect. My nerves were shot to begin with, since I didn’t know how long the attack would last. The steroids made me so sleepless and miserable. I would lie awake and hope for sleep. I tried Ambien CR and Lunesta, but they lost their effectiveness after a night or two. Finally, my neurologist prescribed Klonopin, a multi-use medication. This was fantastic. It knocked me out and kept me asleep. I wish I had known about it when I first started the steroids.

I finally emerged from the 2006 attack in July. I started talking to a social worker who helped me sort out all of my emotions. This helped (and still helps) me tremendously. Many of my symptoms went into remission and I was able to cut my medication list down to two things. I took Betaseron injections for the multiple sclerosis and I believe they really helped me. From that 2006 attack until my recent 2008 attack, I had been in pretty good shape physically. I was careful not to overdo it, until the spring of 2008.

I began to work outside of the home, again at a local library. I was so happy to be out, but I did work that was way too physically demanding, and the temperature of the library was usually quite warm. This job lasted for about 4 months, until I couldn’t deny that I was having another relapse. Again I was forced to stop working. I have to say that this relapse was a little less frightening than the last time, probably because the Betaseron had “watered down” the attack. Most of my previous symptoms came back, especially the weak limbs and the exhaustion. But they were less intense. I also was armed with coping techniques that I didn’t have in 2006. All in all, the MS attack of 2008 was a little less disturbing.

I am now, again, emerging from the attack, and this time some of my symptoms have not gone away. I believe I am more tired and tingly than before, and my left leg still feels, at times, like a lead pipe. I suppose I have to renegotiate my path and tread forward, but I am better equipped today than I was 2 years ago.

When I started to experience a weird tingling sensation when swallowing, I began to really panic. I went to visit the doctors in the clinical trial, and the director informed me that I wasn’t having swallowing issues, because that is a symptom of a more advanced case of MS. He told me to take Neurontin, a neuropathy medication, and it would stop any tingling sensations I was experiencing. I replied that I know what strange swallowing feels like and isn’t such a new symptom evidence of an acute attack? I also stated that although I was only diagnosed in 2005, I’d had symptoms of attacks since 1998.

I was disregarded by the doctors and told to just continue taking the Betaseron, after having also been disregarded about the new vertigo symptom that started in the winter of 2005 – 2006. I was at my wit’s end with getting no answers, and decided to change my plan of attack: I sought the help of a recommended MS specialist in my area.

When I visited this doctor, he finally answered my questions. Yes, the vertigo and swallowing problems were probably signs of a new attack, and yes, someone as young as myself could experience swallowing issues (depending on the areas of my MS lesions, not on how long I’d had MS.) He sent me for MRIs and started me on my first course of IV and oral steroids. An interesting experience.

Before this time I had suffered yearly relapses (between April and July) that were annoying but not severely debilitating. I was able to work part-time and we figured this would be the plan of action, since we knew I probably had MS, and part-time employment I could handle. Ultrasound, which I was trained in and with which I made the best income, seemed more and more like an inappropriate career choice, even part-time, because it involved little sitting or possible breaks in the schedule (contrary to movies and TV, ultrasound techs often scan on their feet to get the exams moving along and keep the pace. Pregnancies aren’t even leisurely exams.)

I began volunteering the year before at a local library, helping to reshelve the books. I did this for about 2 hours a day, 2 days a week. I was a paid shelver for about a month, then hired as a part-time library assistant with some evening and Saturday hours. The schedule was good for me at the time, and I really found an environment that worked for me. So when April of 2005 came around, almost a year after starting there, I was floored when I developed double vision. This clinched my MS diagnosis, and it started my involvement in a medication clinical study. It also began my struggles with working outside of the home.

In May of 2005 I started the study, and was given Betaseron, an MS disease-modifying drug. The study was basically comparing Copaxone, another medication, to Betaseron (regular dose), and Betaseron (double dose.) The theory was that, if tolerable, a double dose of Betaseron would be twice as effective as a regular dose of Betaseron or Copaxone. I knew I was on Betaseron, but I didn’t know which dose I was taking. Side effects for Betaseron include flu-like symptoms such as fever, chills, headaches, nausea, and body aches. I had all of these symptoms as I began taking the drug. Taking Tylenol or Motrin really didn’t help, and I was doing the injections every other day. Somehow, during all of this transition and while suffering from left-sided double vision, I was able to have my family cart me to work and back. Surprisingly this first month was not when I missed the most work.

The summer came and the double vision very slowly resolved itself. I found a way to turn to my left and not glance out of the corner of my left eye. This relapse did not fatigue me, so I went to work and did the best I could, and disclosed my diagnosis. Everyone was very supportive, and I learned that one of my immediate coworkers also had MS, although a milder version.

The clinical trial involved lots of blood work and constant evaluations. My balance and walking were always checked. Meanwhile, over the summer, I started to really feel lousy from the side-effects of the Betaseron and new emerging symptoms. I was developing a tightening around my torso that felt like a really strict corset. Sometimes it took my breath away. The doctors just recorded the information. Towards the end of the summer, the library director, one of the best supervisors I’ve ever had, gave me unpaid leave to try to rest up and feel better. I took about a month off, but I was still having problems with pain/burning/tightening in my ribcage area. Even sitting down would trigger pains. I was running to the bathroom a lot, because food was going right through me. My old symptoms were starting to rage as well. The doctors at the clinical trial just kept recording everything.

In the winter of 2005 – 2006, I was back at the library, with a slightly reduced schedule. One day I felt quite dizzy. This was new. I had never experienced vertigo before. It was horrible. When I went back to my doctors and told them this, they said it couldn’t be a new relapse. Maybe it had to do with migraine auras (from which I didn’t suffer.) All this was recorded by the doctors, but they didn’t treat the vertigo or do MRIs to see if I was having a new attack. Meanwhile, I was so sick from the dizziness and a new fatigue, I again missed a lot of work. In February, my boss had to let me go due to excessive absences due to MS. She wrote me a letter of explanation for the future, citing my inability to work my scheduled hours and not my performance (which was “excellent”) as reasons for termination. This would become evidence for my future disability case.

I became depressed that I couldn’t work. It was the first time the MS had really stopped me from keeping even a part-time work schedule. It is the worst feeling to want to do something, but having your health prevent it. I was also missing a lot of family functions and outings with friends. I was getting frustrated with the clinical trial too, because I felt that the doctors were minimizing my problems. It was as though they didn’t want to admit I was having a new relapse because it would mess up what they were trying to prove in their study.

Things were about to become worse before they got better. As spring 2006 arrived, my old symptoms raged, the dizziness lingered, and a couple of new symptoms evolved. Time for a change as I found my current, awesome neurologist (through word-of-mouth) and learned that indeed, I was experiencing a full-blown relapse. Proper treatment with steroids would follow. At the same time, my husband was undergoing a major career change, which threw us into even more financial instability. Another new, uncertain frontier.

So from 1998-2005, my multiple sclerosis was a big mystery which eventually became dubbed “probable MS.” I had oligoclonal bands present in both of my spinal taps, I was positive for no other similar conditions or diseases, I had more than two nerve scars apparent on my MRIs (“multiple sclerosis”), and I had various telltale symptoms of the disease: intermittent weakness/numbness in my left leg and my right hand and forearm, “trick” bladder and bowel systems, muscle spasms in my left leg, some developing numbness and tingling in my torso, and balance issues with my left leg (I sometimes crashed into stuff on my left side.)

Shortly after we purchased our first home (spring of 2005), I was making a right turn out of our new neighborhood to get onto the main road. I glanced to my left and saw double. Not terrible, nauseating double vision, but just a slight doubling of everything towards my left-hand side. I rubbed my eyes because it was spring allergy time and I thought maybe I had a “misty” left eye. Not so.

I just remember going home and telling my husband about it, and I said aloud, “This has something to do with MS. It has to. It’s another freaky symptom.” I was very nervous and I called my parents first and told them what was going on. Then I called my primary neurologist’s office and at first they said I couldn’t get an appointment for 2 weeks. I lost it and yelled,” I have double $%&*!?# vision! Would you wait 2 weeks to see your doctor?!” So they got me in the next day.

My neurologist concurred that this was likely from multiple sclerosis. He again sent me for MRIs and had me schedule with an eye doctor. He also sent me to the emergency room to make sure the problem wasn’t something “acute”, which is code for a stroke or a brain tumor. I would have a CT scan, which is good at detecting such problems, but an MRI is more sensitive to the fine workings of the brain and spinal cord nerves and the scarring that happens during an MS attack.

On the way to the ER, Bill and I stopped to get some pizza because we knew how long an average ER visit lasted. The day was particularly hot, and I remember that my vision got so bad it completely doubled so that just looking straight ahead caused double vision, and only looking to the right stopped the problem. It is the understatement of the year to say that I was scared.

So my CT scan of course came back negative, and my MRIs showed a new, active lesion on my brain stem. I next headed to my mom’s eye doctor. He tested me, but could detect no immediate problems, but he admitted that he was a generalist. So he sent me to a specialist: a neuro-opthamologist. This is where I finally heard the words,” You definitely have multiple sclerosis.” This woman could see the damage to my 6th nerve going to my left eye (termed 6th nerve palsy.) She said this happens pretty much only to MS patients and diabetics. I definitely was not diabetic.

At this point my general neurologist sent me back to one of the specialists I had already seen. His team concurred with the MS diagnosis and asked if I would like to be in a clinical trial for two different MS medications. I would get more care and be closely monitored over a 2 year period. Sounded good to my mother and me.

I was not given any steroids at this point and had to wait out the double vision for its duration: 7 weeks. At this time I did not know that I could have had the steroid therapy and shortened the attack. I followed what the MS specialists said and started the study, taking Betaseron injections every other day. My best comments about this study are that I have taken Betaseron for 3 years, it works well for me, and it has probably contributed to a recent 2 year period of being relapse-free. My worst comments will come forth as more of the story unfolds.