Category Archives: Blog

Out on Leave

Bill and I are heading out early tomorrow on a road trip to Savannah, Georgia and Hollywood, Florida. He has work-related stuff down in Hollywood, so we’ve decided to make this a full-blown (and much-needed) vacation. I’m really excited about Savannah: it’s supposed to be the most haunted city in America. I always thought New Orleans was (THAT was a great trip, too!) And one of my favorite books—an account of true Savannah events by Esquire journalist John Berendt — is Midnight in the Garden of Good and Evil, which chronicles southern charm and MURDER. Very interesting and ironically funny. I definitely want to check out the cemetery where some of the “voodoo” happened.

Be back in Jersey on June 7th….

Fair Warning for Fair MSers

May has been fraught with car repairs, a very pricey new crown for a cracked back tooth, and a precancerous mole removal/further biopsy. Although the car and tooth stuff have been expensive and frustrating, the mole situation has been far more disturbing.

I grew up and now permanently reside here at the shore. I’ve had multiple bad sunburns over the years, given that one of the big past-times here is, well, SUNBATHING. I’m not one to cook on the beach anymore, but I do enjoy getting a little color and relaxing by the water. Unfortunately (like many fair-skinned MSers), I burn very easily and need to be careful about my exposure.

One of my most vulnerable areas is my chest, since I have a sunroof which I love to keep open and this area also gets continual exposure while wading/swimming, sitting, or lying flat on a towel. I am not a very moley person, but I’ve noticed subtle changes recently with the appearance of a few new moles and one small, dark mole in particular. The mole in question was on my upper right chest, near my bathing suit strap. It was very small (a couple of millimeters in diameter), almost black in color, and in the last month I noticed it had developed an uneven border, which to my knowledge is a definite reason to get it checked out.

The dermatologist did a thorough head-to-toe skin exam and focused in on that black mole. Sure enough, she wanted it removed for a biopsy. So it was removed that day and sent in for testing. When I was phoned a few weeks ago, the office staff let me know that the biopsy turned up “dysplastic” cells. These are not yet cancerous, but they are abnormal in structure. Sort of a turning point towards melanoma, which is the deadliest form of skin cancer. So back to the dermatologist for a procedure to remove tissue (directly beneath where the mole had been) about a quarter’s size in diameter and about the same size in depth. This tissue would be sent back to the lab to be biopsied, revealing whether only the surface mole had precancerous cells, or whether the damage had penetrated the surface and gone deeper.

To make an already long story not too long: I had the tissue removal and second biopsy a couple of weeks ago and just got the stitches out today, after such MAD itching. UGH. My second biopsy came back normal— I’m thrilled and relieved—and now I’m gonna get some Mederma to work on the scarring. I need to return in three months for a follow-up and then have a yearly skin exam thereafter.

Final thoughts: I was dragging my heels for a couple of years getting in to see a dermatologist, even though I know I am a high-risk patient (skin type and amount of sun exposure.) Now I’m so glad I bit the bullet and just did it, because a simple skin exam (covered by most insurances) probably saved my life.

Blue!

I’ve always liked this Keats sonnet. It is actually a response to a JH Reynolds sonnet about the beauty of dark eyes. I just happen to enjoy it for its tranquil qualities, much as I like the soothing color blue. It’s about 80 degrees here already (a little TOO warm in my opinion), but the sky is periwinkle and the sea is dark blue….

Google Images

Blue! ‘Tis the life of heaven,—the domain
Of Cynthia,—the wide palace of the sun,—
The tent of Hesperus, and all his train,—
The bosomer of clouds, gold, gray, and dun.
Blue! ‘Tis the life of waters:—Ocean
And all its vassal streams, pools numberless,
May rage, and foam, and fret, but never can
Subside, if not to dark-blue nativeness.
Blue! gentle cousin of the forest-green,
Married to green in all the sweetest flowers—
Forget-me-not,—the blue-bell,—and, that queen
Of secrecy, the violet: what strange powers
Hast thou, as a mere shadow! But how great,
When in an Eye thou art alive with fate!

My Interview at Multiple Sclerosis Central

I’ve been off of the radar lately, and not due to lousy health but because of the TONS and TONS of reading, writing, and discussing I have to do for my online Abnormal Psychology class. It’s been very interesting but time-consuming. That said, I’m ready to sign up for my next class this fall: Personality Theory. I’m hoping to learn more about the ins and outs of introversion/extroversion and what makes us act like we do….why, Why, WHY? LOL

On the topic of MS: I am currently featured at Merely Me’s Multiple Sclerosis Central site as the latest MS patient profile. I’ve given some insight into my various symptoms, my long road to diagnosis, my philosophies for coping, and my “words of wisdom” to neurologists/medical staff. If you have a moment, please feel free to check it out.

Now onto a new article here, because I am COMPLETELY behind….

Back from Vegas

I made it back from Las Vegas in one piece, although I have to say that the return flight home had a long delay because of high winds at the Newark (NJ) airport. We touched down at 2:30 in the morning with the wind tossing our plane like a crumpled piece of paper. We didn’t hear about the other Continental flight that didn’t fair as well in Buffalo until later that day. I’m thankful to be back on solid ground…

Nothing too crazy went down in the City of Sin. My mom actually kicked both my friend’s and my own butt in stamina as she dragged us around the strip. We finally used the bus system on the third day because we were so tired from walking. But I have to brag that I generally kept up with both of them……..On the second night we all took an evening limo ride along the strip and caught several free exhibits/shows outside of the casinos, including our own Bellagio’s fountain show (pictured below.) We also went to the top of the Stratosphere casino to get an aerial view of the city. Really cool!……Gambling-wise, I LOST the least amount of money: $70. We pretty much stuck to the poker and blackjack machines because the minimum bets along the nicer areas of the strip were usually $10—- too rich for our blood! Although we did make some $1 wheel bets downtown…….The highlight of the trip was last Wednesday night when we saw the Cirque du Soleil “O” show: it had a continually changing pool of water that would be about 15 feet deep (at its deepest) and then revert back to a solid floor! My cousin, who used to be a summertime announcer for high-diving shows at our local theme park—-Great Adventure—- kept in touch with one of the high-divers that he worked with who later joined this troupe of acrobats. So we got a backstage tour after the show was over. Boy, those Cirque people stay in tip-top shape!! Really pretty cool…..

I had a fantastic time and this was just what I needed to get my GROOVE back. Although there’s no place like home.

Been Away

I’ve been away from the website for about a week now and I’m trying to get back in the groove. I think I’ve finally kicked the sinus infection that dragged on and on for about 3 and 1/2 weeks(!) Things here are quiet, snowy, and cold…I’m finally resuming my library volunteer day work, which I haven’t been to in about four weeks. Bill will be reviewed at work soon, and his boss already informed everyone that they will not receive any kind of performance raises this time around. Which is annoying but understandable since he works for a small financial company and the stock market is in shambles. We’re glad he still has a job at all! But he’s going to push for another week’s vacation which won’t cost the company anything.

My one gripe about all of this is the ridiculous health insurance premiums we keep paying. Our insurance is pretty thorough (I’m very grateful), but we are paying about a third of Bill’s take-home income— or almost one of my modest social security checks— to cover the premiums. So it’s still like we’re living on one moderate income. I’m putting my feelers out to find more paid, steady writing opportunities (work I can manage from home and continue to manage even during an MS relapse.) Difficult but doable. No one ever said affording multiple sclerosis was easy…

Come on, Obama! We need better, more affordable health coverage here in America….

Having MS and Being Sick with a Bug

I’ve been flattened by some bug for the past 10 days and I have to say that having multiple sclerosis makes the ordeal that much worse. I’m not sure if I have a lingering cold or maybe something more serious, but I am just starting to re-emerge from the sickness that has been holding me down. And yes, it’s very frustrating.

I don’t know if non-MSers understand how infections are compounded by an autoimmune disease. Since we folks with MS are continuously being attacked by our own immune systems, when we get sick with a “real” foreign threat the risk of our MS symptoms worsening or our immune systems launching new autoimmune assaults (or MS relapses) increases. The immune system of someone with an autoimmune disease– MS, lupus, Crohn’s disease, ulcerative colitis, and so on— can go completely out of whack when the body is fighting a real threat such as an infection, trauma caused by an accident or surgery, or an emotionally-stressful situation. The body becomes very vulnerable to an attack from the immune system itself.

My other frustration lies with taking an immunosuppressive medication— one of the disease-modifying injectable meds— that has a tendency to make me feel worse when I am already sick with something. I take an interferon medication that lowers my resistance to infections and causes flu-like side-effects that are mild to moderate. On a normal day, the side-effects can be slightly annoying, causing headaches or mild fever/chills or maybe absolutely nothing, but when I’m sick with an infection the injections cause me to spike a fever, have bodily aches and pains, nausea, and often a blasting headache. UGH. I sometimes forgo a few shots during these sick times, although I have to admit that the injections have helped me to lead a somewhat symptom-free life during MS remissions. And my MS relapses have slowed down considerably since starting the drug a little over three years ago. So it’s a nonstop battle of weighing the pros and cons of my disease-modifying medication.

One thing I do find interesting about having MS is that it can sometimes work as a barometer to forecast oncoming illnesses. When my usually-dormant symptoms rear their ugly heads, I am often tipped off about a new infection. This has been the case with bladder infections, which I’ve come to experience since my MS diagnosis which was a little over three years ago. Bladder infections can be pretty vague at first– lethargy, a little nausea, and maybe some stomach upset. My MS symptoms become a great forecaster of oncoming bladder infections and other illnesses.

2009 Upgrade

Welcome to 2009. It’s still cold and dry here, but the house is warm and cozy. Bill and I have fixed some things on the homepage, including the comments feature which is now back on. The last 8 or so articles have “comments off” posted at the bottom, but starting with this post the comments are again accessible and we’ll hope for the best in terms of not attracting so much spam–PORN sites, auto insurance ads, casino ads, weight-loss site ads, and so on-LOL! And the previous comments from before the html blunder are still on the pages, so not too much of a casualty. I’m staying away from the html for a while……

******UPDATE: I’ve fixed the comments feature for the 8 or so articles that were affected by the blunder..

Jen (a smile)

Tweaking the Website

Hi there…

I’m working on some stuff to enhance this website. The “comments” html has been messed up for a while now and so Bill and I are working on fixing it for 2009. We have been getting a lot of spam, but hopefully the problem will die down in the coming year. Other than having a small cold, things are not too bad here. The MS is currently at bay and I’m considering taking an 8-week yoga class at my local high school. I’ve been putting this off since the summer and I think now it’s time to get back out there. The volunteering at the library is on hold during the holidays but will resume again in January. And my first column for New Mobility’s MS Life section will come out January 1st. There will be a profile about Joan (A Short in the Cord) and her great chat room.

Things are peaceful here as 2008 comes to a close……Here’s to better health, prosperity, and sanity in 2009!

Sincerely,

Jen

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