Archive for August, 2012


Higher Ground

HURRICANE EVACUATIONS in Louisiana are in place! So sorry, we won’t be able to post this week since we live in New Orleans, which is below sea level. As much as I love this historic city I’m gonna have to leave and flee for my life! I’m being serious but a little dramatic.

When these type of things happen I usually leave early because it is so hard for me to pack. Not only do I need normal things like clothes and my toothbrush but I have to make sure I have all of my medicines, my walker and my scooter. I really hate this because the stress plays havoc with my MS.

But if all things go smoothly, which they probably won’t, we’ll be back up and running by next Tuesday. For now I’m packing and praying!

So I will talk to you guys next week and hopefully all will be ok in New Orleans.


Just Asking

My only relief from MS is when I sleep. In my dreams I almost never have MS. Everything is “normal” again. During my latest dream something different happened. Not only myself but also everyone I came in contact with had MS. It seemed so real. That dream got me thinking if everyone in the world had MS, would we treat the disease differently?

Would normal workdays be 4 hours instead of 8?
Would there be vending machines selling Avonex and Betaseron?
Would it be acceptable to be tired after only being awake for two hours?

Would everyone sprinkle Gilenya on their food like salt?
Would insurance companies consider MS medication as preventive treatment?
Would Tysabri have a mascot like Mickey Mouse in order to appeal to kids?

Would there be cheap over the counter MS drugs?
Would neurologist and optometrist be seen as more important than cardiologist?
Would the National MS Society receive funding from every country’s national budget?

Would medical marijuana be legal?
Would 20/20 vision be atypical and not the norm?
Would there be IV steroid treatment centers in every neighborhood?

Would every building be handicap accessible?
Would Novantrone be available in convenience stores?
Would we have liquid forms of Copaxone and Rebif instead of injections?

If every billionaire, prince, king and president had MS would we have found a cure by now?

Just asking.


So Grateful

We all know my problems walking, but over the past few weeks I’ve been having trouble with my left hand too! How much will this blasted disease steal from me??? If I do a lot in one particular day, maybe by 7pm my left hand will start giving me trouble. Trouble that renders me unable to do anything that requires precision in both hands. At night, it becomes dangerous for me to use the stove and aggravating to dress and undress myself.

I remember this happening to me in the past. You would think it wouldn’t catch me off guard like this. I notice that it only happens when I push my body a bit too hard. By now I should be able to gauge when it’s time to stop something. But obviously, I’m still figuring this out. Because when it does happen it scares the dickens right out of me. All I can think of is a bunch of “what ifs?” What if my hand doesn’t come back? What if this is my new normal? How in the world am I going to fasten my bra? Then the mental commentary begins to spiral downhill from there. My leaky bladder, my almost nonexistent balance, the fatigue that shows up and causes me to shut down. My thoughts only temporarily slowed to consider that my right hand was doing fine and my walking though wobbly hadn’t changed.

I should have given more time and effort to that brief thought. Or even remembered that I could be so much worse off. I often dwell on the things I cannot do. Or on the things I miss doing. But I’m happy to report that over the last couple of days, I am nearly back to normal. Furthermore, I am typing normally. Yes!

We went to church this Saturday, like we try to do consistently. The priest so befittingly reminded me that gratitude is the bridge that leads between problems and possibilities. Notice he said possibilities not solutions or in my case cures. He made a point to emphasize… possibilities. So I need to have hope for greater possibilities while being grateful for what I already have.

I regret only briefly considering the things I can do, like my functioning right hand, mental fortitude and my power to choose my attitude toward my circumstance.

I’m so grateful I can type this post today.

So grateful.


Preview Of Tomorrow

My PT (physical therapist) gave me my dismissal notice today! Which for normal people would be no big deal but for dramatic Dora over here they were harsh words to bear. Apparently, there have been some changes to Medicare. There is now a cap to the number of visits I can have. I’ve mentioned before how much I enjoy physical therapy. So this hit me hard. My word, there is an entire category dedicated to physical therapy on this website! I’m really about to have a little breakdown.

Well we decided together that August 15th would be my last day. My pride wouldn’t let me cry in front of my therapist, but I sure felt like sobbing. It felt like a boyfriend was dumping me. I guess I’ve grown fond of my time there. I mean I consider it an outing. I buy cute clothes just to go there. Don’t get me wrong I generally get out a bit more than some of my fellow MSers, so I really shouldn’t complain. Plus, this just means I have time to return to water aerobics.

I guess I got kind of attached to the friendly people at PT. But as we know change is always just around the corner. To be honest, therapy was beginning to get a little harder for me. It was especially difficult to see how I wasn’t improving. For example, things I could do in the beginning of therapy I can no longer do, like walk with a cane. For goodness sake, I can barely use my trusty walker. Yep, it’s mostly my scooter these days. Quite frankly, that kind of scares me. At 37 years-old, it makes me wonder, “What will my 40’s look like?”

But then again I guess even abled-bodied folk wonder about things of this sort as well. Nobody knows what the future may bring. There’s really not much I can do about it anyway. Plus, all of my spiritual/health gurus say worrying about tomorrow doesn’t help.

But damn, can I at least get a little preview?