- MS HUG - Nadja, from Living! With MS, left a comment on the previous post wanting to know more about what we MSer's commonly refer to as "The MS Hug". I prefer to REfer to it as the "Vice O' Death" or the "MS Ugh" myself, but whatever. :-) Several bloggers have written about their experience with the "hug" (leave it to some Pollyanna-I've-got-MS-but-it-doesn't-have-me MS personnel, most likely from the NMSS to come up with the word *HUG* for something painful!!), most recently BlindBeard, who wrote this post...you can also do a search on her blog, as I KNOW she's addressed this phenomenon before. I believe Lisa, over at Brass & Ivory, has also addressed this issue a while back (help me out here Lisa and throw a link in a comment to the topic on your blog...I can't find it, but I KNOW I read it!!). And then there is the National MS Society's response to the Oprah/Montel/Oz issue at this link. As for my personal experience, I have found the Vice O' Death to mostly center around my waist, sometimes rising into my chest. It is NOT the sensation of suffocation (that involves spasms of the respiratory muscles...REAL tightness), but the sensory feeling something tight like a huge rubber band has been fastened around my waist. I have found an ODD, yet workable temporary relief strategy - I place something TIGHT around my waist - yes TIGHT around my waist...and this seems to LESSEN the phantom pain/tightness (an ace wrap, tight waist band on pants - which, these days isn't hard to find!, etc.). But I'm no doctor...you'll have to figure out your own remedy. Along with about a million other MSer's out there...sigh.
- THE NATIONAL MULTIPLE SCLEROSIS SOCIETY (NMSS) - I think it was Kelley who asked me, "Why no love for the NMSS?" in a comment recently to a post in which I declared the NMSS and I have "philosophical religious" differences. Let me clarify here. I really have nothing AGAINST the NMSS personally. They are a HUGE organization that offer excellent services to the newly diagnosed and family/caregivers of MSer's. They team up with/use money with the likes of the major pharmaceutical companies to bring many educational programs to MSer's across the nation. The NMSS also funds several ongoing research projects. They raise more money than ANY other MS-related organization via their MS Walks and MS Bike Rides. Some of my best friends are affiliated with the NMSS (sorry, had to add that 70's line here! LOL). I am sometimes bothered by the NMSS lack of focus given to those that have been living with MS for quite some time OR those that are currently disabled...I have personally found the MS disabled are NOT what the NMSS choose to include in their "Face Of MS" advertisements and ongoing propaganda. I mean, let's face it - is that REALLY the message you'd want to give someone newly diagnosed with MS??? A foreseeable WHEELCHAIR, CANE, or MOBILITY DEVICE??? I believe in "fighting the good fight", but I also believe in embracing reality...and I think the NMSS falls short in this area in both services and public displays. And besides, I'm innately paranoid/suspicious of ANY organization that can raise millions of dollars a year, but can't seem to secure a DECENT COLOR SCHEME (seriously, orange and brown??? I may never get over that one!) for our *club* like the Breast Cancer Awareness group...sigh...those girls have it ALL! LOL
- GALL STONES VERSUS ALARMINGLY LARGE, PROBABLE OVARIAN CYSTS - For those of you worrying about the functioning of my gall bladder as the possible source of my recent pain (and I DO appreciate your concern, Anne! BTW, IS that your most recent blog address in the link there?), you can rest assure THAT is not the issue. I not only had my gallbladder removed in 2003 (right before my MS diagnosis), I also had what is called an ERCP done the following year...because I CONTINUED to have gallbladder-like attacks WITHOUT the gallbladder!! Yes, a sphincterotomy was performed (not the anal kind, the Oddi kind!), and I've had no recurrence of that type of abdominal pain again...thank you, baby Jesus. I did go see my favorite ARNP on Friday (because I was really considering a morphine pump by then), a repeat TV ultrasound was performed, and I received both good and lesser *good* news. The good-er news is, the largest of my ALARMINGLY LARGE ovarian cysts in my right gonad has disappeared...WOOHOO...but not without some leakage. No rupture to cause *pain of epic proportions*, but leakage enough to cause a very miserable/irritable BrainCheese (which CAN happen with or without physical symptoms...miserable and irritable!). Unfortunately, the smaller (4cm) ALARMINGLY LARGE cyst still remains and continued monitoring is required as well as continuing check on my abdomen for rigidity/increased pain/fever development due to the OTHER cyst taking a leak in my belly. And, I remain on BCP's at this point, so "Sex In The City", watch out! It's a free for all now of completely unprotected sex in BrainCheeseVille! (OMG...just typing that line made me laugh hysterically with unbounded delight...abstinence makes the heart grow fonder I guess! Or is that absence?!?)
- SUICIDE AND MULTIPLE SCLEROSIS - Dear Spaz Attack and BlindBeard: I am very sorry to learn of your personal/family losses regarding suicide. And please understand, I am NOT trying to downplay the seriousness of suicide OR suicide as it relates to statistics regarding MS. It DOES happen...and unfortunately HAS happened in your families. But the truth about suicide in ANY population of diseases or diagnoses is this: Less than ONE PERCENT of the population successfully completes suicide. That's not to say a much greater percent doesn't ATTEMPT suicide at one point in their life or another...but the completer's percent holds true. In the county I work in (and believe me, suicide statistics are observed, calculated, examined, etc., frequently), approximately 220 people successfully complete suicide each year in a population with an estimated 2007 census of 1,859,284...that's one suicide per approximately 8,451 people. The NMSS (there THEY are again) estimates the Greater Washington Chapter (which covers many more counties besides mine) services approximately 9,000 MSer's currently...statistically speaking, that would be less than ONE MSER a year committing suicide in my county alone. And, because the county medical examiner issues a yearly report regarding all investigated suicides in my county (which includes MANY personal statistics about the deceased), I can tell you assuredly these statistics ARE accurate. Again, I am NOT saying those of us with MS do not commit suicide...I am saying it is the rarity, not the norm. And I am NOT saying those of us with MS do not contemplate our own suicide...that is probably the NORM, and not the rarity. We just don't often follow through with the idea to death...and neither does the majority of the rest of the population, mentally ill or not.
Well, I think that is about enough POOPOURRI for today...it's starting to smell in here...and not that overbearing, citrus-y, fruit-y smell we've all grown to know and love in Asian food restaurant bathrooms. No, THIS smell may require ammonia salts to wake me and get me motivated to go to work today!...