Category Archives: My Own MS Journey

Quick MS Update

Okay, so I’m feeling a bit better. Who knows what’s going on?! Lolllll…….I need to have a sense of humor about all of this or I will go INSANE. Practicum is spread out so that I’m doing two 8-hour days with rest between them. Seems to be working at the moment and I’ll go with it……Now to head to Atlantic City overnight! Getting a break from everyday life is a great way to practice self-care.

 

Hope you are practicing your own self-care. : )

 

Jen

Multiple Sclerosis: One Day at a Time

So I was beginning to feel better for about three weeks and then recently my luck turned. Not so sure what is going on at this point, but I feel about as lousy as I did at the onset of this acute attack. I’m kinda disappointed and my energy is lagging again, and I need to feel better for my social work practicum (just started on Monday). However, I might not feel better for a while or maybe this will be my new normal, which of course frightens me. So I’m facing the fact that I need to take everything slowly and deliberately, and it might be on a day-to-day basis (or even an hourly basis, as I struggled and learned at practicum on Monday). I’m always the optimist, so I’m thinking of a way to turn this disappointment around. I just can’t allow myself to think otherwise.

 

Hope you are feeling and coping well today.

 

Jen

Quick MS Update!

Hi there!

 

I’ve been outta the loop recently because of graduate school demands, but my academic portion of the program is over so I can spend more time concentrating on this website and my MS journey (thank you if you still find yourself coming to this site– I appreciate the continued interest).

I am currently having an acute multiple sclerosis attack, unfortunately, and I’m trying to hash out things for my final Master of Social Work practicum. Yes, once again fitting MS into my life, but I haven’t had a new attack– to my own knowledge– in about five years, so I can’t really complain. Things have been good. : )

More soon to follow, but I also seem to have a concurrent urinary tract infection, since I have some permanent damage to my bladder functioning……I need to go get some rest and work on conquering this MonSter, fully-rested.

Talk again soon (and I hope this finds YOU well).

XO

Jen

Stepping Up

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… :)

I Met Joan and Lisa and Sonia— What Fun!

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!……

Bringing My MS Story Up-to-Date

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.

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.

Multiple Sclerosis and Feeling GOOD

Joy, Google ImagesI’m sitting at my computer, imported beer at my side, and I’m thinking back about my day: my family and I took a lunch cruise that started in the Hudson River, swung down around Battery Park, and headed up the East River. There were four enormous waterfalls that an artist created along the shorelines of the East River. One actually stood underneath the Brooklyn Bridge. Fantastic. My cousin booked this excursion, and the majority of folks on the cruise were there for the live gospel performance. So live music, good food, great sights, a boat ride, and family. A unique trip that I ordinarily wouldn’t do. When do I listen to gospel music? Nevertheless, I found myself thinking, “I’m living well with MS.”

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.

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