Sunday, April 27, 2008

Denial is Not a River in Egypt

I feel like I blame things on MS and get pissed off when other people don't. But then, when other people blame my MS for a pain or a behavior, I get pissed off at that, too. In short, I'm a piece of work.

I have cramping and pain in my hips, thighs, knees, forearms, and biceps. I think it started yesterday. It may have been the day before. Is it MS? I am a bit sleep deprived which can definitely exacerbate MS symptoms and even trigger a relapse. Ken asked me if I felt well rested this morning (I stayed over while the kids were at John's). It told him I NEVER feel well rested. It's true. Do other people? Do you?

When a friend at my meeting asked me how I was feeling this morning and I told her about the pain and fatigue, she said , "Maybe it's the rain." Mind you, this friend knows that I have MS.

I bit my tongue then said, "Maybe." I wanted to say, "The rain???? What the hell?! I have M.S. --Multiple Sclerosis, for cryin' out loud."

But, then...when I dropped an iced coffee on the ground on my way into work, another friend asked me if I was doing that all the time again like when I was first diagnosed. I wondered why she couldn't just cut me slack for being clumsy. Why does everything have to be a symptom of MS?

I have my next neurology appointment in about 4 weeks. There's still a part of me that thinks Dr. Pless is going to do more tests and tell me it was all a huge mistake and I don't have MS. I know that 2 MRIs of my brain, an MRI of my thoracic spine, and an MRI of my cervical spine all found lesions with a cause of MS. I know the lumbar puncture found the three bands of protein or some other such substance that is visible in many MS patients. I know that I have nerve damage on my optic nerve and can't see out of my right eye. I know that I am injecting myself with disease-modifying drugs three times each week. The insurance company is apparently convinced enough to pay for all these expensive drugs and tests. Why am I still in denial? Or rather, why am I in denial AGAIN???

I used to think acceptance was a linear process. For me, it's more like a loop-de-loop roller coaster. It's up, it's down, it's upside down, and every which way. Sometimes, I'm good with the MS, even grateful for the disease and the positive impact it's had on my self care, priorities, and writing. Almost all the time, I feel incredibly blessed to have health insurance and live in the Boston area in 2008. I can't imagine having MS in a undeveloped country or even to be uninsured in the US. Most of the time, too, I'm grateful that I don't have something fatal or untreatable. MS may suck but it doesn't kill you like some cancers can.

Sometimes, I'm really, really sad. I think about what the disease has taken from me, mostly stuff you can't see like a sense of security, physical strength, and invincibility. Sometimes, I think it's all just a nightmare or a grave medical error. Other times I am just so pissed off and I want to stamp my feet and shout, "No fair!" at the top of my lungs. The worst, though, is the fear. The unknown is absolutely terrifying.

I want to believe that scientists will find a cure. I want to believe oral medication is just around the corner. I want to be in this one day where it's easier to stay positive and grateful. But it doesn't always feel that way.

I think the denial is a protection from all the other crap. Living in ignorance feels better than living in sadness, anger, or fear. I can just put my figurative fingers in my figurative ears and sing, "Lalalalalala" at the top of my lungs and maybe that'll work." Hold on. Let me see.

Nope. When I took my fingers out of my ears and opened my eyes, I still had MS. I still HAVE MS. I also have Ruby and Zane coloring on their new oversized paper I found at Building 19. I still have a full belly from the curried chicken, rice, and green beans I made for supper. I still have a roof over my head and a bed to sleep in and my children are healthy and here with me. If I keep my fingers in my ears I can't hear them giggle and tell me they love me.


  1. J-
    MS described to a T. The unknown has always been my challenge too. I have to make an effort to "not Worry". What a joke... it is always there and always in the mind. You can however find the good. The kids, the hot guy, food, and most of all another day of fighting the battle and winning. Sometimes we will blame the MS sometimes we won't. Too often others will forget the MS. It is because we are "living" with the disease, and in the long run that is a good thing. Hang in there and Rest as much as you can.

  2. Thanks for reading, commenting, and understanding, Tracey. I plan to get a whole bunch of rest tonight.
    Lazy J

  3. This rang so true for me, Julie. The ups, the downs, the gratitude and then the rampant, "why me???!!"
    I was diagnosed in 2001 and sometimes it still catches me off guard. It's an unpredictable fiend.

    Regarding the oral medication? It is just around the corner! I am on the phase III trials for the new oral drug for MS (fingolimod). I'm doing incredibly well on it and am convinced that the drug will get FDA approval within the next couple of years. And that is gonna be one good day for all with MS.

  4. Thanks, Maggie. I am so psyched to hear about the oral meds! Maybe next summer I won't have the crop circle track marks.Unpredictable fiend is a great nickname for this disease.
    Lazy J

  5. Julie,
    This is probably the very best description of the emotional rollercoaster of MS I've read. Recently, I've read alot of positive, out of denial in days, crap around the blogosphere. Pardon my attitude.

    I've just returned from a brief vacation with my beau to attend his cousin's wedding. His mother traveled with us. Her mobility is rather limited, being beyond morbidly obese and arthritis. This morning he and I were discussing ups and downs of the trip.

    Here's something I learned which simply 'pissed me off.' He noted that having to go S-L-O-W due to his mother's weight and my MS was disappointment for him. What..the...?

    I just started taking Baclofen for my increasing spasticity which first became a problem almost two years ago and which the doc and I decided to go the med route. For the first time since I can remember, I was able to move around with almost ease. We weren't going slow because of ME!!!

    He also expressed disappointment in not being able to enjoy the Florida heat and sun as much due to the same reasons above. Damn!! I didn't even trip over myself in the heat, although I did lose all sensation in my hands/arms.

    Ok, enough of my complaints and negative attitude. I just felt comfortable unloading a bit after reading your wise words. thank you.