Tag Archives: chronic. illness

The Struggle

The Struggle

I struggle to get kids out of the house with some kinda breakfast, Eggo Waffles in the car, spelling quiz in the car, pull over to yell effectively about wrong words. Doesn’t everyone do this? Get to work, park my car on E. Not the car…me. At work, struggle to pee, no time for that, struggle to teach, to be patient, answer questions, give guidance, go to meetings. Stay awake in them, have fire drills. Struggle to get kids to soccer, tennis, and gymnastics. Take sitter to play with one while the other is in activity. I drink coffee and wait. Struggle to get home, struggle to get family feed, struggle to do homework. Struggle to read stories, fall asleep while reading Harry Potter…again, struggle to grade papers, keep up, Hubby does my report for work, struggling with cog fog, can’t concentrate, struggle to create a test…couldn’t. Struggle to be patient, struggle to be a loving mom, struggle to want sex, sticky notes on bathroom mirror, reminders, HAVE SEX, MORE SEX, ANY SEX, SEX IS GOOD, grade papers 6:00a.m. on SUN. morning at Cracker Barrel, grade and plan from til 12, at noon “Mommy, Mommy!” music to my ears, I miss my family, husband struggles alone with two kids. Try to grade papers, after school; tennis club, drink LOTS of vending machine coffee, after school soccer stay in car to grade papers, instant sleep. Sat. grade papers, pass out, struggle to get to ballet with Avonex side effects, a peanut butter and jelly sandwich and Celebrex (found to be unsafe, taken off market). Struggle to meditate so that I could struggle more. Struggle to not kill anybody, struggle to stay married, struggle to have date-nights, struggle to get sitter, Chinese food and movie from blockbuster.

I had to stop struggling so I, quit.

HELP! I need your feedback more than ever. I am writing in preparation to speak to groups WITH and WITHOUT MS. Groups that are struggling for one reason or another. To make my presence as meaningful as possible, please tell me if you can relate to “The Struggle” in ANY way and if so how?

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MS and fatigue :(

Just about to sit and put my thoughts down in the name of a blog post.

journal50019628_nIt’s taken me all morning to have breakfast, take my medicine(S), and catch up with a girlfriend on the phone. Of course, now it’s 2:27 and I’m CRASHING! Dammit! Gotta go.

Comments:

When have you found fatigue to disrupt your day?

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MS: Let’s talk about Mental illness…mine.

Today I want to write about mental illness… my own.

Anyone who knows me, just a little would use these words to describe me: happy, cheerful, and never stressed. My husband calls me his “optimism”.

Is this the face of depression? Look again.

Is this the face of depression? Look again.

He also says I can be a “Pit Viper”.

I’ve suffered off and on with depression since 1997. I know what I’m talking about. Not sad or a little down but, depressed. During these years, I raised two children, maintained a healthy marriage and taught school. How? You ask. With the help of my big sister who suggested (insisted) that I, at a very young age, twenty-two to be exact, go to a clinical Psychologist. “GO!” She said. “Just trust me and GO!”

She didn’t explain how it would make my life better, but assured me that it would. She was right. I was exhibiting signs of depression then and she saw it. My psychologist helped me to have a deeper understanding of myself and how certain depressed feelings could be affecting the choices that I made. Not his job to judge my choices or to change them, just to help me make the connection between my depressed feelings and my choices; after all, I did have free will. Looking back, he never even used the word depressed. I was young and he was good. No stigma, no darkness, no shame.

This was unheard of in the deeply southern black community from which I had come. This was and still is taboo. Suggested remedies would have been; go to church, pray harder.

Mental health just doesn’t work that way. Neither does dental health. You could no sooner pray away depression than you could pray away a cavity. We do best when we pray and use the resources we’ve been given. Abandoning my Southern Baptist upbringing was not necessary but being open to other things, was.

Mental Health needs to be dealt with aggressively, like Cancer. We pray…yes, but we also use Chemo when we need it. Is there any shame in that? No.

What did help me? Exercise, Mindfulness Meditation, journaling, therapy and years later…medicine.

Managing all of these in the name of depression also gave me a great defense mechanism against stress, which causes my MS to be more active. I can never really separate these things; MS and depression and stress.

The larger point of this post is: a few days ago a beautiful young brown girl, Karyn Washington, only twenty-two years old to be exact, committed suicide.karyn-washington-http://www.cosmopolitan.com/celebrity/news/karyn-washington-suicide

Karen was the creator and founder of “For Brown Girls”, http://www.forbrowngirls.com/, an online inspirational blog which was there for other girls, an undertaking well beyond her years. Her mother recently died of cancer.

She was a gift.

I wish she had had a big sister like mine; or an Auntie, a Teacher, a Minister, a Friend …a STRANGER who cared enough to say “GO! Just trust me and GO to a psychologist”! Someone who understood what was happening and could take the ridicule. There is no shame in that.

There is shame however in letting our ignorance and fear cause us to lose even one more precious gift. We need to open up. Talk about mental health and suicide. Talking about it doesn’t make it happen, just the opposite, it prevents it.

Helpful Links:

New York Times Article: Suicide Prevention sheds Light on Longstanding Taboo.

National Suicide Prevention Lifeline

Depression and Chronic Illness

Psychology Today Magazine

Please share your thoughts and experiences:

 

 

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My Dad only has One Testicle: MS, Kids and Cancer

On this day at work I sat on the school bus seat across from 11 year-old Ian and his 10 year-old brother Brian. KindrgrtnBsThe minute I pulled out my knitting- SWOOSH! Ian was next to me. He was fascinated and eagerly asked questions. Are you knitting? Yeah, do you wanna try? Happy response. I put my arms around him and held his hands around the needles and guided him through a couple of stitches.

Me: “So what’s your favorite subject?”

Ian: “Science, but my concentration is Visual Arts and Music. I play the violin.”

Me: “I LOVE science and know a lot about it, and I’ve wanted to play the Violin forever!”

I don’t know where (or why) in the conversation Ian tells me, “My Dad had Testicular Cancer”. Somewhere before or after he told me that there are 208 bones in the body.

Confused_2_tnb

Ian: “Yep, and he only has one testicle, like Lance Armstrong. Who you know, by the way, is actually a good guy?”

Me:”Absolutely he is.”

Now little brother Brian slides over to say that his friend told him about a bone that we don’t need.

Me.: “Hmmm, I know we don’t really need the appendix, but I don’t know of a bone we don’t need.”

Ian: “Can you die from cancer?”

Me: “Yes, but Testicular Cancer is one of the best kind to have, ESPECIALLY if they catch it early like Lance Armstrong.”

Ian: bright eyed, “Oh yeah, they caught it really early! He walked at this thing to raise money and there was a big sign that said TWO YEARS CANCER FREE.”

Me: Wiping the sweat from my brow I say,” That is awesome! Your Dad is great. He’s a survivor!”

Brian: “What’s a survivor?”

Me: “Someone like your Dad, who doesn’t die from cancer.”

Ian: “Lots of people die from cancer.”

Me: “Yes, they do, but lots of people don’t. It’s hard for the body to fight cancer, but medicine has lots of new things to help.

Brian: “Like CHEMO! Pause…But it makes your hair fall out.”

Ian: “What is Cancer?”

Me: “Welllll, do you know about cells? Your body is made of a bazillion cells? and…”

GEEEEZ! When are we gonna get to their bus stop? Please… drive faster!

It’s obvious that these boys are extremely bright and that their parents love them very much, and have done all the right things to help them deal with this.  They also seem to need to talk about their Dad’s cancer some more. I looked like a “safe” person. A stranger that they felt like could trust with their feelings. I passed the short test: I cared enough about them to show them how to knit, I listened to them, I didn’t freak out at the word Testicular, and I didn’t bash Lance Armstrong.

My children were 5 and 10 when they first heard that their Mom has MS. I too thought I did all of the right things to help them deal with this. Did I? These boys clearly asked me questions that someone had already answered for them, like “can you die from cancer?” Maybe even, “What is cancer?” Someone giving better answers I’m sure, but these boys still had an overflow of emotions regarding this, that they still needed to get it “out”.  A  healthy way to do that was to “talk about it”.

Did I do the right things for my kids? I realize now, that I could have done more. A talk/play group. Something run by someone professional…qualified. Run by someone who knew HOW to get the kids to talk comfortably about their feelings, specifically those feelings regarding my illness. I was not that person for these boys. I do feel though, that I did no harm. These boys will be fine; they are emotionally able to talk, and they’ll find a person  to talk to.

Comments: How have you helped the children in your life deal with your chronic illness, or maybe that of a close family member, a Grandparent, sibling,  or Aunt, or Uncle? Can you think of other ways that someone might try to help their children cope?

Please share. It’s a tough time for the children too.

Some articles that you may find helpful and the websites that I found them in:

10 Challenges for Parents With Chronic Illness

http://psychcentral.com/blog/archives/2010/09/27/10-challenges-for-parents-with-chronic-illness/

Parents and Chronic Illness

http://www.parents.com/parenting/better-parenting/advice/parents-and-chronic-illness/

5 tips for parents with chronic conditions

http://www.sheknows.com/parenting/articles/985629/parenting-with-a-chronic-illness

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Mrs. Smith’s Magic Schoolbus

Mrs. Smith’s Magic Schoolbus!

magic_schoolbus

My perfect job!

If you are anything like me, when you work…you fantasize about being able to NOT work. I felt like that, and I’m in the small percentage of people that LOVED their job! I’ve been to the other side now, and it ain’t that great.

So here I am, back in my element with the kids. My MS (after a nosedive like no other) is going back into remission (if that’s possible).  Not working is actually making me sick now. I think that’s when you know. Being at home BECAUSE I am sick, felt necessary in order for me to function and be well. Not working now that I can is actually making (keeping) me sick.

Knowing that I can’t do what I did, my task was to consider what I can do and examine the job possibilities out there that align with what I need.

Hmmmm:

1)      I need part time

2)      Not too physically demanding (Barista is out)

3)      Physically demanding. A desk job or a work at home computer job is out. When you’ve been at home and limited in what you can do for so long, being out and physical becomes very important

4)      Continuous interaction with people. Kids have been my group of choice. They give me positive energy and there is no adult cattiness. I like being the one in charge. I like setting the tone.

School Bus Driver! My perfect job! I started two weeks ago and I am loving it already 🙂 The training is quite extensive. I am at the beginning of it but, I can see it now! Mrs. Smith’s Magic School Bus

Humor me and watch this video. I’ve followed Mrs. Fritz on countless science adventures.

Any and all children you have access to should watch with you. Yes, that means you, Dominique, Gaven, Tahlia, Raven and Phalyn! Leave a comment and tell me if you liked it.

Comments from adults are welcome too:

Have you found yourself going back to work? Have you changed work environments completely? Have you disclosed any information about your MS (or other chronic illness)?

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Constipation

smiley-face-maybe-next-time

Let’s face it, we all have problems going (or not) from time to time, and it’s not especially sexy to talk about, but WTH. In normal people constipation is when, occasionally, the stool does not move through the intestine as it should and/ or, there is not enough water in the colon.   MS patients deal with constipation more than most. If you’re slow like me, you don’t even realize it’s the MS.

As I said, stool must keep moving. In people with MS, like me, lesions may prevent the brain from accurately receiving or transmitting signals that control peristalsis. I remember learning about that (peristalsis) when I taught Anatomy and Physiology. In other words, my colon may not be receiving the signal for involuntary movement that would keep the stool moving through the digestive tract.

Lack of physical activity is also a downer. It’s critical in moving digested food through the digestive system. Things like walking, which seem so simple, actually do more than just get you from one place to another. Many of us are unable to move around and walk much, due to weakness or spasticity.

Other causes could be a diet that does not promote good digestive health. Not enough FIBER! But hell…I’m a Vegan! Maybe there’s not enough water to help all that fiber through. I drink so much water I might as well be a fish. Let’s not forget that the side effect of some medications is constipation! That’s it! That’s it! My anti-depressant, Wellbutrin is the cause! (happy dance here) But wait…the side effect of NOT TAKING my Wellbutrin, is…depression! Ugh, I don’t THINK SO!

Pause here! Insert huge red flag. Remember I’m slow. I used to pee like a lion.  My coworker would come into the 3 stall ladies room, LOL and say,”Estizer, is that YOU?” It was identifiable. Now, I pee like a kitty, you don’t even know I’m there. L I’ve seen a Urologist/Gynecologist and she says, “Your bladder is fine and you have no urinary tract infection” (she also looks 12). How is this? I KNOW my body and something is drastically different. Because of my MS, I’ve discovered that there are time’s I can’t put my finger on what’s wrong, and they can’t SEE it. If it ain’t broke…don’t fix it. I know now to “let it go “and just let my body handle it.

I begin to see a connection here. Things down there are sluggish. It could be that my urinary system is not receiving the signals properly for involuntary movement (I pee like a kitty). If my MS is causing THAT problem, it might also be affecting my digestive system causing chronic constipation. BOY, do I like connecting the dots!

We can’t control which nerve signals in our body will be disrupted, or for how long. We can, however, give our body a head start by maintaining healthy habits all of the time.

Eat LOTS of fruits and vegetables (fiber), drink LOTS of water, and exercise daily.

 

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