Thursday, July 1, 2010

There's No Sugar In This Cane

I sit at my desk at work with it facing me. Black shiny metal, sleek with it's hook up top and four pronged bottom. A device for assistance, the small cane with the metal grip is assisting in making me feel very weak. Which is why it's been standing there in that corner untouched for over a week.


Last time I wrote about being sick on this blog, it was late March and I hadn't even gone for the nerve biopsy yet. I was nervously hopeful, though, just days away from Easter. I went for my Pre-Admission testing fine, had a lovely Easter, attending church with my family, and then rested up for the procedure the next morning.

Things went wrong from the start. When I arrived just before 5:30AM, the hospital staff was not ready for me. Then when the doors were unlocked and me and the few other patients were led into the pre-surgery room, a careless staffer handed me a file with a "Louise D------" label on it. I hopped off the bed and explained, I am most definitely not her. Well, whoops. Back down the long corridor, Driver's License back out, re-signing forms I had signed at the Pre-Admission Testing. Sigh.

Back out, up the corridor, go pee in a cup take off all ur clothes and put on these funny socks and insulated gown. Alright.

Clothes locked away in a locker, I carefully handed the pee to yet another nurse (I guess the original nurse was to be working with Louise whats herface.). Lay on bed. Blood pressure. Date of last period. Medicines taken. Uh huh. Good, Girl, you have not eaten since before midnight. Could you be pregnant (Um, didn't I answer that already? Okay...)? So what procedure are you having done (What? THAT'S NOT ON THE CHART YOUR STARING AT??? Is that Louise's file again?)? Wow, what's a nerve biopsy (Again, shouldn't YOU know something about THAT? You better not be the nurse in the Operating Room assisting)? Okay, temperature? Normal. Would you like a magazine?


My neurosurgeon didn't show up until nearly 10AM. The surgery was supposed to start at 7:30AM. He was tired, just arrived back from Figi. You know Newark Airport, flights are always late... (SHUT UP! You try laying in the post-pre-admitting/pre-surgery room listening to Kenny G for two and a half hours!) I'm rolled into the room, Lite FM going (hey, I'll take Sade any day over Kenny), the IV is loaded with the same knock out drug that knocked Michael Jackson's lights out permanently, and I never heard the anesthesiologist count to 3...


I thought I'd be back at work in two days. It took over a week before I hobbled through the office doors. The pain was mean, why I'd think otherwise when the doctor removed a small portion of a nerve just above the back of my ankle, I'll never know. The sensation was bizarre. raw pain from cut skin, but an amplified pain that I already felt because of the neuropathy. A small poke three inches away from the site resulted in pain that shot up to my thigh and down to my pinky toe. I couldn't wear regular shoes for weeks. Fortunately, it was cool, so I didn't look odd in my comfy Uggs and black suede boots.

At the end of April, I was in charge of putting together an important luncheon for work. It didn't turn out great, but it wasn't bad, either. I had to do quite a bit of walking, and by the time the guests were leaving, I was visibly tired. I ended up in a quick conversation with one of them, who as delicately as possible asked if I had Multiple Sclerosis. My heart ripped. I responded that every MRI taken to date had come back normal, and my doctors did not believe that was the cause. She touched me lightly on the shoulder and said, "Good, good, Honey, because that's an awful disease. My uncle has it, and it's just awful."

So, I thought, is not knowing why I look like I have M.S. And so is being told by complete strangers. By the time I was in my office, I had begun sobbing so loudly, three co-workers and my boss had surrounded me. I was falling. If Easter had been a time of faith and renewal, one month later I was crashing back into despair. I cryptically wrote on my Twitter, "What goes up...".


In May, I finally learned my biopsy results. Inconclusive.

After asking a battery of questions, I placed the phone back on the hook and sat back. I had a gross little scar, which still itched like a mosquito got to me, but no resolution. Answers, yes. No autoimmune disease or that one that effects the eyes and ends with "gravis". But the resolution I needed as if I were Aaliyah? Sorry, Ma'am, we can't help you.

At least falling when you're already down isn't so bad.


Something changed in the middle of May, though. I went back to taking the vitamins I had told my doctor I take everyday. I started stretching and doing simple leg exercises every other day. I rubbed stinky Tiger Balm on my thighs and sat in hot baths. I placed an ice pack on my knee and a Sharper Image massager on my shoulder blades. And I started walking. With my husband in the grocery store. With him to the laundromat to do clothes. I went to Wal-Mart and bought plants, and to Kohl's for a new summer bed spread. I went out to lunch, and to the shore twice. I walked around a flea market twice, picking out beaded necklaces and bangles. I wasn't normal, but it was the best I had felt consistently since last fall.

For nearly four weeks, I was on an upswing. Sure I had dropped a good amount of money on vitamins and supplements, but it was worth it. Well, I had a good run. Hmm, no, not actually, but I had a good time walking and booty bumping and playing Wii tennis. Then just like that, my balance seemed slightly more off, my thighs started hurting more, and I was sore. My heart begin to sink.

In the midst of my decline, my neuromuscular specialist called and said he wanted to discuss the biopsy results (What was there to discuss? That was like 10 weeks ago!). After a brief wait, he repeated the no autoimmune diseases speech, adding in no tumors or cancer, either. He told me he sent my perplexing case to four hospitals including Colombia, and they had come to the conclusion I was being poisoned (HUH???).

"There are toxins all around us. In the water we drink, the homes we live in, the lotions and detergents we use...," he started, and ended by stating I should not accept gifts from China, make a list of the things I use regularly and...wait for it... do not relax my hair (which is why my "experiment" for a few weeks has kept going, and I'm about to hit three months sans relaxer)! "You'll have to be tested for mold, mercury and lead exposure, of course...," he went on and as I told him when I got my tattoos, I realized I wouldn't fall some more at hearing this news, but I wasn't quite ready, or able, to get up either.


Mercury and lead are bad, but a metal cane is good.

Not when you are 28, have no detectable illnesses and look completely healthy. Except for an occasional limp or awkward stance.


A week and a half ago, my co-worker Kathy brought in the cane, remembering my dramatic melt down from April. It took awhile, but she had dug around and found one her late mother had used. I choked out a "thank you" and sat it in the corner. Every morning, when I walk in, it greets me, an unhappy reminder of my "falling" state. "Falling" since it's ongoing- I'm not knocked flat right now, but I'm not upright, either. But it's "falling"- while my legs haven't been so bad recently, my fingers, especially the all important one with the two white gold symbols of commitment wrapped around it, have gone numb.

When I first married, all I felt were those rings. I was constantly aware of their presence, making my finger feel alien. Eventually though, as the months passed, the rings seemed to meld with my finger, and once again, it was mine. Now, though, it feels foreign. I find myself rubbing it just to feel. And as I do, I feel the little shiny, smooth metallic rings.

Some metal is very good. (Smile.)


This morning, someone tweeted something like, "If you feel you are falling, it's really cause God is having things fall into place." I snickered because I was writing this and also because I'm waiting for God to catch me.

I preferred my own tweet. "'We could never learn to be brave and patient, if there were only joy in the world.' — Helen Keller". By the end of this, I should have the bravery of a warrior and the patience of a saint.


Unlike that unfortunate old lady in those 80's alert monitor commercials, I have not fallen, and I refuse to accept I won't be able to get back up. When I started this entry, I was trying not to make contact with the cane. Well, fed up, as I left yesterday, I swooped the thing up, brought it home, and placed it in my closet behind some shoes. Hey, I might need a crutch one day, but not today.

That's one less piece of metal causing me nerve-wracking pain.


Don said...

So let me get this right ... the nurse asked you what is a nerve biopsy?

By the time I was in my office, I had begun sobbing so loudly, three co-workers and my boss had surrounded me. I was falling.

Geez. I actually know this 30 year old woman who has MS and she is doing quite well. There are days where she feels extremely weak but those days are hardly consistent.

Yes. I understand that isn't your case at all. But just wanting to throw it out into the air....

Perhaps the avoidance of toxins and walking more often with your husband will take away the numbness and eventually improve the occasional limp or awkward stance.

All in all, this was a touching read and easily served as a reminder to me that no one has all the answers. But we all have the gift of life and the ability to live and enjoy as much as we can for as long as we can.

Finally, I have to believe inspiring reads such as these are what blogging is all about.

Enjoy your holiday weekend and I am sure you will somehow end up listening to Summertime.

Hopefully I am able to see a Janet Jackson live performance for the first time in my life @ Essence Festival.

Alisha De Freitas said...


Okay, calming down. Yes, the nurse asked me that. Augh.

I actually did a freelance story for a NJ paper 3 years ago on a woman with MS, and while she had down times, she was married, raising 3 daughters, coaching and running a MS support group. She's an inspiration to me now.

I have a co-worker and a friend with MS, too, and they're married and working full time. It's a disease that effects everyone differently. I was mentally preparing myself for that diagnosis, but none of the doctors believe I have it. I just don't fit the criteria or have and brain or spinal damage evident in nearly all patients.

I'm really a mixed bag most days. Sunday I was cooking chicken, baked mac and cheese and cornbread. Tuesday it was brownies. This morning I stood in line about 45 minutes handling business. But tomorrow I might be in pain or worse, lose the feeling in my legs and have to sit most of the day. There's no telling. I just try to keep my mental stable, whether physically up or down.

Janet! Ahhhh... :-)

Keiron said...

As daunting as your experience and as fragile as your mind state may seem when detailed like such, you inspire me daily with your strength and fortitude.

Alisha De Freitas said...

Thank you so much my Knight. I would be lost without you. It's nice to have a handsome man escorting me about... I clutch your warm hand instead of cold metal... You stand beside me, lead me at times, at others yield to me.

My Sunshine during this twilight.

Beyond Danielle said...

So I'm confused where you poisoned or do you have MS?

Alisha De Freitas said...

Hey Danielle,

To read more on my aggravating but faith building saga, you can click here:

You can also go here:

And for a lighter look at my illness, go here:

But no, as far the doctors are concerned, I don't have MS. I do have some of the symptoms of it, like loss of balance, stiffness, soreness and tiredness. Too much "ness", trying not to feel like a mess. Lol!

Just keep me in your prayers.

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