Shots - Don't They Hurt?

As we studied my new scan, the doc pointed out the new lesion on my brain.  I saw it and thought, “that’s a nicely shaped circle and I think MRI’s are very cool.  And, look how big my brain is”! 

“You have MS”, the doc said.  

Shit.

Within seconds we started talking about treatment, to slow down the progression of this disease.  What we really started talking about were shots. And, he threw a lot information at me that I couldn’t catch:  Interferon Beta-1b, glatiramer acetate injection, synthetic proteins, side effects, thinnest needle, Copaxone, Betaseron, subcutaneous injection, flu-like symptoms, depression, injection sites, monitoring of liver function, blood counts. I essentially have two to choose from and it is up to me to decide what I’m willing to put up with. 

Shit. 

I don’t want to take shots. 

Don’t they hurt? 

So, how do I do this?  Is someone coming to my house every day to give me a shot?  Fat chance.  I have to do this myself.  Oh boy.  That’s a bit scary.  What if I miss?  And, tons of blood starts oozing out of the injection site?  How much is this going to hurt?  Are the neighbors going to call the police when I scream bloody murder during the injection?  And, what’s up with the flu-like symptoms if I choose Betaseron?  Am I going to be sneezing, coughing, and sniffing at the office all day?  That could get annoying and will require a lot of tissues!  And, if I choose Copaxone, how will I deal with the daily reminder that I have MS? 

These are not very nice choices. 

I would like to see your other menu please.

~C  

Low Vitamin D Levels Linked to MS

A new study shows that low vitamin D levels may be associated with more advanced physical disability and cognitive impairments in persons with multiple sclerosis. Interested in learning more?  Check out this article from the Times of India:  click here to read more.  Thanks for the information - now I need to check out my daily vitamins' ingredients list.

P.S.  World MS Day is May 26!

Lesion Hangover

When I woke up at 5:30, unable to continue sleeping, I suspected I might not last all day.  I felt pretty shaky, fatigued, and cloudy, rather like a hangover less the alcohol consumption.   Let’s call it a lesion hangover.  My hangover lasted all day and I found myself praying that a greasy cheeseburger and fries would be just the remedy I needed.  I didn’t dare, knowing that it would not make me feel better but is it wrong to wish for a regular hangover that eventually goes away?

Hope is My Ally

It is too often that people with chronic diseases get depressed and stay at their rock bottom.  I won’t do it.  If I have a good day, I’m excited.  I find myself wishing for five more weeks of a good day.  And, I hope the good day lasts at least 24 hours.  Yes, I enlist in hope because without it, I will have a series of many bad days indeed.  

My List of Stress Reducers

There is no cure for folks who live with CIS (or MS for that matter) and one of the best things I can do to feel better, aside from taking drugs, is manage my stress.  I’ve been thinking about stress all week particularly because I have a demanding and exhausting job.

So, here is my list of stress relievers: 

• Quit my job.  This is nice in theory but leaving the workforce is not an option.  I have responsibilities and I am not a self-made millionaire.  Instead, I will begin figuring out the color my parachute in the hopes of making my heart flutter. 
• Exercise.  This causes me stress.  And, this is problematic.  When I go walking, my nerves get very active.  From the bottoms of my feet up through my hips, everything tingles after just one lap around my office building.  So now I get anxious when I think about exercise.  I don’t want my whole body to electrify.  Yet, physical activity is very important for people with neurological diseases.  
• That being said, I think yoga will help.  This will be an excellent way to manage the disease.  My sister is nudging me, reminding me how important this is and to get in a class right away. Om. Breathe. Meditation. I like the sound of this. 
• Acupuncture.  Balancing the flow of energy through the pathways of my body.  This is very appealing to me.   According to the theories of Chinese medicine, disease results from the imbalance of energy flow so I am ready to take on those little needles and balance my Chi.  
• Finally, remove the assholes.  I deal with insensitive people all the time at the office and am now armed with the book, “The No Asshole Rule” so I will figure out how to survive the damage caused by these jerks.  In turn, my stress levels will decrease and I will be happier.  

My Good Friend Mel

The months leading up to a diagnosis can be stressful, frightening, and frustrating.  I have a lot of love and support around me from my friends and family, for which I am extremely grateful.  One friend in particular really makes a difference.  My good friend Mel.  Mel lives strong every day with MS and is a very large proverbial rock for me.  This is unfamiliar to her because I never really tell her how much of an inspiration and a source of strength she is for me as I face the realities of what is happening.

I have my reasons as to why I don’t let her in on this.  First, and this is selfish, I do not like to talk about stuff, out loud, particularly when it comes to my feelings.   Why would this prevent me from telling Mel she’s been my silent hero?  It would require me to open up, talk out loud about my feelings, hold hands, sing cumbaya, cry.  All of this makes me a bit squeamish.  Second, my symptoms are not nearly as severe as hers and I do not want to minimize her painful struggles. While her foot goes completely numb; mine just tingles.  While she takes daily injections; I take a few pills.  While she gets back tremors; I get tickling and only after a shower.  My symptoms and experiences seem so small compared to hers.

Maybe because of this I have found strength from Mel and learned not to be scared.  She has shown me that you can cope with a disabling disease and live a normal life.  Mel teaches me a lot about how my body works.  She explains demyelination to me.  This is important because it knocks down the myths I’ve manifested in my head about neurological diseases.  When my symptoms worsen, I try to fill my life with what is important, with what makes me happy.  She taught me that.  So, instead of lounging depressingly around the house, I try to get out to Little Italy, my favorite neighborhood in San Diego.  Mel encourages me to listen to my body so I rest when my body calls out.  I always feel better after a good nap!  Finally, laughter is important, especially to me, and Mel reminds me of this all the time.  MRI’s can be funny when you have a friend like Mel. Da,da,da,da,da,da,da,da,da! 

So, I thank you Mel, from the depths of my heart.  I thank you for the courage, strength, and hope you share with me and I love you very much. 

My Earlier Journal Pages

These are pages from my journal describing my symptoms from about three months ago.  I read my words this morning and just now realized I am feeling a lot better these days.  This is awesome!!!  This last month has definitely been the better of the last six.  It is hard to remember how much stronger the pain, numbing, and burning was before.  I'm glad I kept notes.