Sunday, April 05, 2009

Potpourri...BrainCheese Style...

Yeah, a little bit of this and that brain feels too scattered to write anything of meaningful substance. WAIT! That occurs EVERY TIME I post anything here...sigh.

So today's post is really Poo Pourri...smelly thoughts from the bowels of my demyelinating brain. I think I'll just address my random notions in bullet points rather than trying to organizing anything...kind of how I pack a suitcase for travel. I begin throwing everything including the kitchen sink into a pile the day before I am scheduled to leave...then, seconds before I am to exit my hut, I frantically grab whatever will FIT in the suitcase and cram it full. Yes, I have been known to TAKE the kitchen sink and leave a week's worth of underwear laying in the pile unattended at home...and that sink is rather painful to wear under my clothing. LOL

  • 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 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'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'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!...


Denver Refashionista said...

Thanks for answering my question. I hope your probable cysts either go away or quit hurting. Is that wishful thinking? I don't know much about such things but you always seem to be getting the worst of it. I appreciate the way you keep fighting and keeping the humor alive.

Shauna said... said Poo. Today I posted a pic of deer poo with you in mind.


Webster said...

Linda, you always write stuff that is meaningful and substantial -- didn't you know?

Re: the not-quite-so alarmingly large, probable ovarian cyst. Why don't you just have the mother taken out?

Oh, and I think it's absinthe that makes the heart grow fonder.

Blindbeard said...

As usual, this was too funny and informative -- can't decide which it was more. Keep rockin' out with your pockets out! I think about the suicide factor because I know (?) that if you have suicides in the family it increases your risk of suicide, and I have 2 completed suicides in my closer relatives. Hey, maybe you, in your infinite wisdom, could shed a little light on those statistics and the validity of them. Or not, if you are sick of the subject.

Cranky said...

Cheese - enjoying your blog very much. I, too, have no love for the NMSS and I feel it doesn't do crap for the chronic progressive folks (as you note) nor for caregivers, contrary to your post. In the 20+ years since my wife was diagnosed, we've received almost nothing in monetary or other kinds of support from the NMSS. Perhaps I gave up on them early on and haven't checked back in to see if they've improved in their support of caregivers, but I haven't been "feeling the love." Sorry for the whine, but I do have a burr in my saddle about how little this group does for those with the disease. Honestly, I feel like it's all about research for them.

have myelin said...

Oh Poo. I was hoping for some Disneyland type news but that doesn't seem to be happening this year.

Disneyland type news? WTF is that. Anything...not Poo-y. I allowed to cuss without cussing?

Anne said...

Hmm, an MS moment - I forgot you posted that you had already had gall bladder surgery. Sorry about that.

Yes, my blog now has a 3 in it and your link is correct! Thanks.

I wondered if you ever had a laparoscopy for endometriosis. Endo is extremely painful and alot of docs don't look for it and instead look for everything else under the sun. Ovarian cysts (enlarged ovaries) often are the heads up to endo.

And lastly, I am only wondering here, but if the ovaries are that painful and clearly you are done using them, why not get them out? Take hormone therapy for the instant menopause and get rid of the pain?

Just curious.

Miss Chris said...

I've only had the MS hug one time and that was enough for me. Hopefully it was just a fluke, Lord knows I've got enough other things ...

Spaz Attack said...

Hey Cheeze IT

As always I enjoy your informative posts. I must be 6 persons away from EACH of those One percent MSers who follow through on suicide.(LOL)

Hey... any statistics on those MSers relgated to nursing homes because they can no longer care for personal needs? My sick morbid thoughts again.

Well...On the POSITIVE side YOUr BLOGS are always INTEResting to read, ever insightful and for the most part your own wacky humor shows through (yeah..even in the serious crapola).

Hugs to you Cheese Splat -- oh, did that make your MS hug grip you ever tighter? Because your hug back just cut me in half ;)

Spaz Attack said...

Oh...I wanted to add another positive note -- just to annoy the heck outta Cranky pants post.

First, truly I am so sorry To hear about Crank's wife's disease and it's horrible impact to their lives. It truly sucks and I'm not one to think their must be a silver lining, nor a reason a higher power gave her the disease for a reason -- that's a bunch of crap.

That said I will say I have benefited tremendously from the Greater Washington (Seattle) chapter of the MS Society. In my case it's provided counseling support, and I've enjoyed it's many educational programs. I'm not a "group" person type, but I did attend the last Women with Wellness Retreat. I was worried it would be all 'touchy, feeling,' but it wasn't. It it a free weekend retreat on Bainbridge Island that was packed FULL of educational stuff, plus MS Neuro specialists who allowed us to personally pick their brains.
Oh ... some attended in their wheelchairs accompanied by their personal caretaker.

The Society itself has been able to direct me to who can try to help me in various situations. No, they don't have all the answers, but I have found individuals who do reach back and try to help.

You might want to check back and see how the Society has changed. Programs are there to help needy ones with funding in various ways. Grants are in place ... doesn't hurt to ask, right?

Oh yeah ... A note to Cheese It Queen. Orange happens to be one of my favorite colors. Just wish I could afford Orange Crocs to go with my Orange MS Walk t-shirt :-)

I agree, however, it would be nice to have articles focus more on the gravity of living with MS, but wouldn't that be too depressing?
Perhaps Crank would benefit by peer to peer phone support?

And just a side note...I supported the MS Walk and got the hairbrained idea to e-mail Joyce, the president of MS Society, to donate to my walk. She did, and not a small amount either. I've never met her, nor her me. I'm just one of the plethora of plankton in the sea of disease.
So from the top on down I do think the Society is a large organiation working to help us cope, and hopefull one day overcome, this insidious disease.

Patrick @ Caregivingly Yours said...

Interesting observation about NMSS. I agree wholeheartedly about the promotional dilema with the "Face of MS" and progressive MS. My wife Patti's symptoms would scare the hell out of any newly diagnosed person, their family, and their friends.

Though I will give NMSS kudos in just the last few years for more focus and attention to "living with" progressive MS, for example we receive a $700 a year grant from our local chapter to help pay for our wheelchair accessible van.

As for orange, hey I love the color!

Caregivingly Yours, Patrick