In the post-meal chatter after this year's Thanksgiving dinner, one of our guests very innocently declared "If you don't have your health you don't have anything." Rather than make anyone feel uncomfortable, I sat quietly squirming in my seat unwilling to speak up. I was hesitant to disagree with this statement out loud because it would most likely prompt some well meaning loved one within earshot to try and make me feel better about my lot in life. The truth is that although there are very few days lately that I feel really good, I don't think of myself as unhealthy. I know that may sound strange for someone disabled from MS to believe about themselves but most of the time I give very little thought to how others might be perceiving my physical shortcomings. It always comes as a shock to discover that some might believe that my existence is less than because I'm not as mobile as most. I know that my ego and pride are at work here but I really do not enjoy being pitied in any way. I am and always will be a strong, independent person who has more than my fair share to be thankful for. Do I wish my outward health were better? Yes of course I do but everyone is dealing with some challenge; mine just happens to be visible
As we prepare to host 23 at our home for Thanksgiving dinner tomorrow, I want to take this time to acknowledge all my blessings. I am beyond thrilled that all our kids and their families will all be under our roof as well as my husband's brothers and their families and my father-in-law. We also get to welcome an old family friend that can't travel to see her own family this year. I am thankful for the abundance of love, camaraderie and food that we'll share and for all the amazing memories we'll make for years to come. I am so, so fortunate to have a husband who is a great cook, who enjoys sharing that gift with others, and who is organized enough to pull off this large endeavor. Finally, my health can be precarious at times but I am lucky to be surrounded by so many friends and family that would do anything for me all year long, not just at Thanksgiving. As I celebrate an embarrassment of riches this holiday season, I am painfully aware that most are not as blessed. We will take the time to remember all those alone and suffering tomorrow, the least we can do for all we've been given.
When my brain keeps bouncing around at bedtime making sleep elusive I call it monkey mind, a phenomena that doesn't happen too often fortunately but when it does, I'm wiped out the next day. I try to keep a regular routine nightly, staying off the internet, stretching and exercising a bit, then taking a shower or bath after heading up to bed at the same time. I had the extra frustrating challenge last evening of having "monkey legs" too which is spasticity or more commonly known as restless leg syndrome. I use medical marijuana in the form of gummies to combat this issue but that didn't even work last night. Luckily there wasn't much scheduled for today except a yoga class that could be skipped so I am taking this opportunity to blog and do some things around the house hoping that tonight will be more restful and tomorrow more productive.
. I decided to forgo the flu shot again this year but am wondering if that was wise. The influenza vaccine is only recommended for MS patients if they’re not taking steroids and since I just did a heavy dose of solumedrol (intravenous steroids) 5 weeks ago , i was nervous to pull the trigger. There are also some ingredients in the vaccine that are troubling including formaldehyde, aluminum salts and chicken egg proteinss. My Funtional Medicine doctor believes these are dangerous substances even in small amounts although my neurologists have always recommended the immunization.. I don’t want to go into my conspiracy theory about doctors being in the pockets of big pharmaceutical companies but my distrust might be warranted and it’s not worth the gamble in my opinion.
My husband and I went to see the movie "Bohemian Rhapsody" yesterday, a movie about the band Queen. Although I always thought the lead singer Freddy Mercury died of AIDS, he really died of pneumonia in 1991. I had a visceral reaction to this discovery for a couple of reasons. When I was first diagnosed with MS many years ago now, people would comment that someone they knew had passed away from MS. Besides being petrified that would be my fate, I would get angry because I didn't believe that anyone with my diagnosis could die from it. In fact, the lifespan of people with MS is almost as long as the average. It's more accurate to say that a person died from complications of MS which more often than not means they developed pneumonia or something equally as serious and their body was not strong enough to fight it off. I got pneumonia a few short months after I was diagnosed because like Freddy from Queen, I was working way too hard and not taking care of myself. I feel so fortunate that now my full time job is to take care of myself, determined that this disease is not going to get the best of me if I can help it.
The other reason that this movie impacted me so much is that you never hear of people dying of AIDS any longer. If Freddy had just been able to hang on a little longer, there would've been medicines available to help him possibly live to old age. I sometimes worry that the same scenario will play out for me and other MSers, that we'll just miss out on a life changing medicine or better yet, a CURE for this often disabling disease. Because of important developments in research into Multiple Sclerosis, there are now 15 disease modifying medications where there was only a couple when I was first diagnosed. I hope and pray that the next 20 years brings us closer to ending MS once and for all but in the meantime, I will stay as strong as possible doing my part to end this disease.
Hello World. This is a blog we created to give any one affected by MS in any way a constructive way to communicate with others going through the same challenges.