Archive for October, 2012

36

Being Normal

My close friends and family know that I was raised and still am Catholic but hold a deep appreciation for Buddhism. You may or may not realize that I write about and try to uphold several Buddhist principles alongside Christianity. I wholeheartedly believe and respect the teachings of both sects and find that particular passages inspire me. It brings me a certain amount of comfort and safety.

The other day I came across a great Buddhist quote.

“Most of our troubles are due to our passionate desire for and attachment to things that we misapprehend as enduring entities.” ~Dalai Lama

After reading the quote, I immediately begin to wonder if I’m too attached to how things use to be. Honestly, I thought every physical faculty I’ve lost was an enduring entity. Then I realized that the quality of my life is being changed not only because of MS. My life is being changed because I allow MS to center my thoughts on my able-bodied past instead of what is happening in the present. Maybe that’s why I still cry over my declining physical aptitude. I began losing my abilities years ago but I am still obsessed with the idea of being able-bodied. I still want to do things on my own terms. It’s the dependency MS begets that I hate. It’s my sense of independence and control that I miss. I wish I could just move past this but I stumble every time.

Has my life truly been so bad because of the things MS has taken from me?

The obvious answer is no, but boy do I miss being “normal”. I think I should concentrate on the present moment as it is. Perhaps that may be the first step in defeating MS in this battle for control of my life.

“It’s human nature to wonder if we’d be happier with more. Perhaps the key is to work with that instinct and realize we can have joyful experiences if we’re willing to cling to less.” ~Lori Deschene

34

Immune Compromised

Finally, I got a new non-multiple sclerosis endeavor to talk about! Well sort of…you’ll see.

My husband and I are trying to buy a new home! Yes and I naively thought banks and/or credit unions would have a separate grant program for people with disabilities. Especially, since our income is drastically less than it was pre-diagnosis. But no, they don’t. I guess the best answer is to earn as much as you can before joining the disability club. Also, make sure you get long-term healthcare insurance through your employer while you’re eligible.

I thought that in accordance with the Americans with Disabilities Act, financial institutions would make certain accommodations. Meaning lower interest rates for people living with disabilities, but I quickly figured out they don’t. Besides the financial issues, I’ve also found myself weighing options I haven’t considered in a long time. Surprisingly, it was quite welcoming. I’m pondering things like, what’s more important, having a bigger living area or larger bedroom? Let me tell ya, I’d much rather make those decisions than what disease modifying drug to pick. I must admit, having MS has taught me not to sweat the mundane issues. Past hardships don’t seem so problematic anymore because I’m becoming immune to worrying.

But I’m still not completely enlightened yet. As it turns out, the home I really want is out of our financial reach. When will I just be satisfied with what I have or in this case, can afford? But that’s the human condition. That’s the reason for the whole stock market crash, right? I always want more. Be it walking or scooting around. I never quit. I remember a time when all I wanted was a scooter. Now, I have it, but I keep busting my butt trying to use my walker. It’s so ironic that I’m drooling over square footage that I can’t even walk?

The next day, as we were leaving to meet with our realtor the phone rang. It was my doctor. Apparently Gilenya, the pill I take for MS, is doing a serious hacking on my white blood count and my doctor wants me to go to the emergency room if I get a fever, feel lightheaded or dizzy. A low white blood cell count means your immune system is suppressed. This leaves me open to getting sick really easy. The plan is to let my counts rise again and start on the other new MS pill. He said it has just been released and is safer than Gilenya, but it’s not as affective. Ultimately, it might also lower my white blood cell count! Great! (I’m being sarcastic)

Nevertheless, I pulled it together met with my realtor and put in a bid on a new condo.

See we just got to keep moving forward with or without an immune system.

24

Forever Grateful

I don’t know how I would be able to manage this horrific disease if I didn’t have so many beautiful people in my life. I receive so much love and support and I would like to thank my family, friends, and Internet buddies for all their encouragement and assistance. I wrote these words especially for you.

You always see the smoke before the fire
When my spirits are down you lift them higher

You remember for me when I forget
You steady the needle before you inject

You talk for me when I can’t speak
And hold me up when I am weak

You stand for me when legs will not
Just hearing your laugh makes the pain stop

You’re my best friend, my shinning star
When I need help you’re never too far

You say you understand when I know it’s a lie
But I appreciate your empathy it helps me get by

You still ask my opinion when a decision is made
Even though my past judgments should make you afraid

You’re always there anytime of day
When I reject everyone you come anyway

I hear you cry when you think I’m not there
You carrying my burden just isn’t fair

Despite all my moaning, complaining, and strife
You still keep me in your life

This disease is so very hard to live with alone
You have embraced when most would disown

Thank you family and friends for all that you give
I will be forever grateful for as long as I live

30

Sex, Intimacy, and MS

Sex has been on my mind for a while now. So I figured I’ve blogged about urine and bowel issues, why not follow up with sex????? Natural transition, right? No not at all. Don’t worry; I’m not actually going to talk about the act of sex. I’m going to focus on how MS has affected my capacity for sexual feelings or my sexiness to be clear.

At first, I was just so spastic. My legs wouldn’t cooperate. Now that I have muscle relaxants, I’m a tad bit more limber but I don’t feel desirable. After all, my husband helps me with things one normally wouldn’t want any man to be present for, much less help out. I know I’m blessed to have him around but honestly how much of this can we take? I always harp on the activities Multiple Sclerosis has stolen from me but I forgot to mention my sex life. That part of me is somewhere between my walker, wheelchair, scooter and shower bench!

I just don’t have the energy to get “cute”. You know to go the extra mile from presentable to attractive. I think people don’t really look at me that way in a wheelchair. It stinks not being at eye level. I try to shake things up and actually dress like a 37-year woman. We also try to live that way too. Well, as much as we can. I know there are things my husband loves to do together that I just can’t do anymore.

Most mornings all I can do is simply get dressed. Makeup has been a casualty of this war and high heels are impossible for me to wear. I do pride myself on weekly visits to the beauty salon. I get my hair styled and a pedicure with hubby waiting patiently by my side. It’s funny, because I want to at least try to be seductive. But sometimes even with the hair and nails complete, I don’t feel like the diva I think I used to be. I do my best not to take him for granted. I wear dresses and cute sandals as often as I can but my shape is not where it was before this despicable disease. I remember him telling me my legs were his favorite body part of mine. I wonder what it is now? It’s surely not these wobbly stumps I have today.

But despite all of my MS faults, my husband still tells me how nice I look. Now, I just need to convince myself.

That’s the hard part.

17

Fighting Envy

 

I think one of the facets of multiple sclerosis that has whacked me the hardest is the amount of dependency it thrusts upon me. So now, when I discover outlets that allow me to exercise independence, I am elated!

Last weekend was the first time I have gone to my local park and used my scooter all the way around the jogging track. It was early and cool, so heat and humidity was not a problem. It took my husband and I an hour to finish the entire path, but I felt better for having taken on the challenge of being amongst the healthy in this feeble body of mine. That is obviously the core reason I haven’t been to the park in a long time. Well, that and of course the heat factor. I’ve come to realize there are ways around my limitations if I just show initiative and a little grit.

I was on my scooter but I was still able to convince myself that if I held my stomach in, sat up straight and tried to squeeze my rear end tightly, I was somehow working my core strength. I hope it was an accurate assessment. But nevertheless, I took a huge step in the right direction. I enjoy being outside at the park. I even enjoy being in the company of the walker/runners.

I still may resent them a little bit, but I’m working on that.

We were at the park in the first place for a laughter yoga class, but when I failed to see the group we just kept on going around the track. To be honest I surprised myself. I had no intention of taking on the track in my scooter. Who goes on a track with a scooter? It really sounds pretty silly to me. Unbeknownst to me, my yoga class must have been cancelled because I certainly didn’t see them out there. But I’m glad I didn’t stop looking for a gang of silly people laughing for no reason. Laughter yoga is another little simple pleasure I enjoy, similar to the way we meet here to exchange ideas and best practices.

I can’t help adding that often my husband invites me out to the park to join him for a trip around the track. For some reason he seems to like for me to come along wheelchair or not. But for me, in the past the entire event has left me a bit down. You know because I use to run. I think I told you once I went and saw the group of guys that I used to proudly jog with. It hurt to see them. I was even a bit jealous. I even selfishly told my husband I just couldn’t go anymore. He of course soon stopped going as well. Which made me feel like crap. I had just taken away his bit of respite from caring for me 24 hours a day. You’d think he could just go alone. Except, to make matters worse I shared with him I was kind of scared to be left in the apartment by myself. He can’t win!

But this weekend was different. We both went and I feel like I won a little piece of “us” back.