I'm heading out on a brief adventure in a few hours to visit the lavender fields of Sequim, WA. It's beautiful country and a fabulous journey to get there. Here's a link to where I'll be going:
http://www.lavenderfestival.com/
I missed the actual Lavender Festival a few weeks ago, but the fields will still be gorgeous. I'll take the camera for a few hopeful photos to post here when I return. Gotta run...well, actually hurry up...running would be a true feat!
Be back Wednesday!
LD
It's been a tough battle, but I'm pleased to announce Nancy Reagan's "Just Say No" campaign has beat out Nike's "Just Do It"!
I'm talking about the ol' spinal tap...lumbar puncture...LP. I just got word this weekend from Dr. She Who Will Not Be Named that I DON'T have to have the dreaded spinal tap. This WAS her idea and not Biogen Idec/Tysabri TOUCH pushing the lumbar puncture issue.
We discussed the event extensively via email, with me telling her my nightmarish experiences and she explaining her rationale for wanting the spinal tap. I read her reasoning and made my decision (it's nice to have docs who LET me decide!)...NO LP.
She tells me 800 MSers receiving Tysabri had their CFS (cerebral spinal fluid) examined for JC virus (that's the nasty virus that causes PML...y'all know PML, so no explanation needed) and not one came back positive for the virus in their CFS. She and another neurologist on the Advisory Committee voted FOR LPs to be done because they didn't feel 800 was an adequate sampling...the other docs voted no...so the Tysabri folks did NOT include this test in their protocols.
I truly appreciate her careful considerations and medical input, but I decided to "Just Say No" to the spinal tap since she is giving me that option. She assures me I will still be a candidate for Tysabri even without the LP. I just can't put myself through another one of those tests...I really AM spineless!
Whew! One less medical test to have to prepare for with my already fragile psyche. Now I can focus all of my anxiety and inappropriate neurotic worry on my colonoscopy this week!
"Butt" I digress...
If you've had your national news on, read a newspaper, or are psychically tuned in to the great Pacific Northwest, you've heard about the shootings/act of terrorism here in Seattle yesterday afternoon. But just in case you're living under a rock, I will recap:
A lone gunman pushed his way through the security door of the Jewish Federation in downtown Seattle, made an announcement he was a "Muslim American" and angry about what is happening in Lebanon/Israel, and opened fire on workers inside the Federation's offices. He killed one woman, critically injured 3 other females, and appears to have shot 6 (or seven...there was one woman shot just outside the Starbucks beside the Jewish Federation, so not sure of the actual count).
I work in a building downtown several blocks away from the Jewish Federation, so I was in no danger (for those of you who might have cared!) and I fortunately am not familiar with any of the victims. I am also not familiar with the terrorist.
What I AM becoming more and more familiar with however, is the fact my once quiet city of Seattle has become a FREAK MAGNET and a homicidal hotbed of casualties!!!
Seattle is not known for murder (until this year, unfortunately!)...we are the Space Needle and World's Fair, Microsoft, Mt. Rainier, the Seahawks Superbowl football team, Paul Allen and Bill Gates, Starbucks Coffee, Nirvana and Kurt Cobain, Jimmy Hendrix, Biogenetics, the home of the "grunge" look, rain, and a "small town" city that has been safe to walk in at night. We are the original environmentalists, a city named after a native Chief, a higher than average international population of Multiple Sclerosis, a place where people are courteous and yielding, and a destination for several million tourists each year. We are not a violent people.
Perhaps it has been the gross population influx to the area, the increasing traffic jams, the lull in the computer and software industry, or the worry we are due for the "big one" (earthquake) that has caused this recent unrest in my once hip, but sedate city. Perhaps it is merely a symptom of the generalized worldly unrest or the sickening direction our nation as a whole has been traveling. I don't know.
What I DO know is this: I want my city back. I want to feel safe here again. I want to be able to walk the mountainous trails of the Cascades and not fear a murderer is on the loose (A mother and daughter were recently brutally murdered on the Pilchuck Trail in the north Cascades this past month). I want the young adult population here to feel safe attending their parties (The post rave Capitol Hill massacre occurred this year, when a young gunman opened fire at a party, killing 6 people and then committing suicide). I want all the religious fanatics to kiss and make up. I WANT MY CITY BACK!!!
But why stop at my lovely city of Seattle? Maybe I should be dreaming and wanting a bit higher up on the food chain? Maybe I should be crying out and pleading to get my country back? Dare I scream from the peak of Mt. Rainier and announce, while I'm at it, I want my WORLD back?
Frankly, I'd settle for just getting the "human" back in the term HUMAN RACE...
It's my Achilles Heel. It's the one thing I medically fear. I'd rather have my eye poked out (I think). I'm talking about the dreaded SPINAL TAP.
I got a call today from my neuro's office wanting to schedule me for my "spinal tap" before I start Tysabri. I had assumed my whining and begging I did with Dr. She Who Will Not Be Named had already removed me from the "tap" list...she HAD rather promised me this exclusion a few months ago.
But it seems the drug company who makes and distributes Tysabri has another thing in mind...they have their own protocols...they don't allow exceptions...they won't provide the drug to someone as spineless as me unless I "comply".
My very first spinal tap was a disaster. I was told after 45 minutes of digging around in my back that I had "tight spaces"...I won't even go there! And after 45 minutes of nearly passing out, my "tap" was completed. But this was NOT the end. Oh no...nothing could be THAT simple!
I spent the next 3 days flat on my back in bed. Every time I sat up, I got a horrific, pounding headache. The neurologist at the time (I shall fondly call him "Dr. Dumbass") neglected to tell me this would not be a normal response to a tap under any circumstances. I, instead, just layed there and suffered until I couldn't "suffer" any longer.
I finally ended up in an ER with a blood pressure 210/110 from the pain...they move you right into a room with a pressure like that and there was no wait! I had a very kind ER doc and anesthesiologist who told me I would need to undergo a "blood patch" to make the pain go away. It seems all that digging in my tight spaces (I still have no idea what Dr. Dumbass was really trying to say!) caused a leak in my spine and this was causing the headache.
So, I consented. I was re-tapped again. They withdrew blood from my arm and shot it into my back. The pain went away instantly. I became determined to NEVER have this test done again as long as I was able to scream, "NO!"
I'm scheduled to get another spinal tap...I don't know what came over me to consent to this. I've heard "on the streets" Dr. She Who Will Not Be Named is the best in the biz when it comes to finding a spine in someone so spineless as me. The doctor who coordinates all of the regional trauma services in the PacNorthwest has publically said a few years ago HE would see Dr. She Who Will Not Be Named if he needed a neurologist. Dr. SWWNBN brags about her skills to me...I can only assume I'm in good hands. I can only assume she'll be able to get into my "tight spaces".
So far August is NOT looking like my best month. I've got the guided tour of my colon next week and the search for my spine the week after. Everything will be pretty much fine-tuned, replaced, charged up, refilled, or removed by the middle to end of August...just in time to start Tysabri.
I'm really not worried about Tysabri killing me...I'm more concerned the tests to GET to Tysabri might...
Here's my favorite Top 10 list I have compiled for you. I have entitled it, "Top 10 Dumb A$$ Things People Have Said To Me About My MS":
10. So, how long do you have to live? (Death sentence acknowledged)
9. My best friend’s aunt’s sister’s daughter who lives next door to their son has MS and she’s been fine for years. (I don’t care)
8. Can you still see? (Yes. I see stupid people standing in front of me asking lame questions)
7. MS…Isn’t that something women get around their period? (Only a man would say something so idiotic)
6. Do you know if you’ll be too tired to go? (Well, no…I CAN’T predict next month exactly how my fatigue will be, but you are certainly wearing me out now!)
5. What’s with the cane? (It’s truly only a fashion statement…really)
4. Do your shots hurt? (No. Avonex is a specialized painless shot. Scientists know how to make all injections painless…they’re just not sharing this information with the general public)
3. Oh, come on. You can make it another few blocks/miles. (I’m glad you believe in me. So believe me when I tell you, “I friggin’ can’t go another step!")
2. I didn’t know you have MS. (You didn’t get the nationally distributed memo? Hmmm…you may have been left out of the information loop for a reason)
And finally the Number One top dumb a$$ things people have said to me about my MS:
1. But you look so good! (I do, don’t I? And you look just as ignorant as I thought you would)
I have a friend who has some difficulty with word pronunciations at times...I find it cute...she doesn't find it funny! I've heard her referencing my MRI's before as Magnetic Renaissance Imaging (of course "you's guys" with MS know it's "Resonance" imaging, not Renaissance!). I suppose one could mistake the MRI experience as a movement or period of vigorous artistic or intellectual activity, i.e., Renaissance Period...I know I get a lot of thinking done when I'M in the tube!
So, I got shoved back in "the tube" today as part of my RRMS Rituxan Study follow up. I never get to know the radiology report of my MRIs in the study as it is a double-blinded study I am participating in. I get poked, prodded, tested, and scanned, all in the name of science.
I've pretty much grown accustomed to the routine of it all and feel like an old pro when it comes to MRIs. I find myself even reminding the technicians of various parts of the procedure like hair caps and coils and IVs...I'm not always sure they appreciate my "diligence", but I offer up my comments just the same!
It's kind of odd to me how things that once seemed extraordinary or even scary (like MRIs, colonoscopies, IVs, doctor's visits, etc.) have become so routine in my life. A friend of mine gave me a birthday card this week that said I wasn't getting older...just more "interesting" to the medical profession! And it really IS true...I seem to be spending an inordinate amount of time as a patient these days, getting poked, prodded, tested, and scanned.
I'm hoping this latest run in with the medical profession will end soon and I CAN have my own Renaissance Period...I'd like to get back to more stimulating thoughts about other things besides diarrhea, lesions, medications, numbness, pain, and disability! I'd like to experience a "movement of vigorous artistic or intellectual activity"...I'd like that "movement" not to include my bowels...
Whew! I am one tired puppy!
The heat wave has really interfered with my ability to get any sound sleep this week. Fortunately, last night we had a drop in the over night temperature and it was actually "comfortable" when I finally crawled out of the sanctuary of my bed this morning!
Have you ever noticed, when you finally DO get a good night's rest, you actually feel MORE tired when you wake up? Well, maybe this hasn't happened to you, but it does happen to me...I woke up this morning, realizing I had really slept for more than four hours...I've been tired ever since! What's up with that?!?
I'm off to bed again now...it's supposed to be down in the 60's over night tonight. I'm looking forward to bagging a few more "Z's"...the sleep is great, but the beauty rest is a necessity! (I need to bank about ten years of sleep to catch up on THAT category!)...
We're setting record temperatures here in Seattle...consequently, I'm staring at pictures of ice sculptures to try to convince myself it's really NOT that hot here! So far, my eyes have grown tired from staring and I'm still pretty darned warm.
The Ol' 42 rolled in and rolled out yesterday without much fanfare...just the way I like it. I treated myself to a day of air conditioning at work (yeah, that's pretty lame), then a friend treated me to a few hours more of air conditioning at a movie. We went to see Al Gore's movie about global warming...it seemed quite fitting for the evening, given the fact these temps here in Seattle are most likely DUE to global warming!!!
My intestines have settled down...some. I saw my newest addition to my medical army today: The Gut Doctor. There was a whole lot of blah blah blah exchanged, another fecal present left for some unsuspecting lab technician, and a day scheduled next week to ram a camera where the sun doesn't shine and see if someone really CAN locate my brain up there! I was hoping my Universal Intestinal Studios Tour from 2003 would be enough for him to peek at, but no...it seems EVERYONE wants to be their own tour guide and the scope has to be repeated. Personally, I think "they" should all just be focusing on the fact I can leave a human excrement sample on command...that's just NOT normal!
I liked the Gut Doctor well enough. Actually, I should clarify...I neither liked nor disliked him, which is in his favor. He was somewhat officious and clinical, which I actually prefer in a Gut Doctor. I don't really WANT to be on a first name basis with someone who's going to stare up my hiny. Frankly, I'd prefer never having to see him again and I could just leave his wad of money on the dresser while he quietly slips out of the room...that seems fair.
Butt (I know that's a typo) I suppose we'll have to have more conversation after "the procedure" next week. I'm hoping he can rule out once and for all other causes for my distressed pipes and we can blame this whole problem on good ol' Multiple Sclerosis...after all, everything ELSE gets blamed on MS.
In the meantime, I'm rather enjoying still having no appetite. After this Spring's steroid run of weight gain, it's kind of nice watching those few pounds fall off so I can get back to my svelte size of just obese. And really...no one CAN honestly accuse me of being full of crap these days!
And finally, on a less disgusting note, my neurologist's office is supposed to be certified tomorrow with the Tysabri TOUCH Program. I'm not sure I should be excited about this, but I am. I really hope this drug turns a corner for me and my now "aggressive" MS (that's just what my neuro calls it, and I find the reference rather intriguing!). I'd like to have a few days...dare I even ask for a few weeks?...where I'm not dealing with some kind of crappy (yep, I referenced it again) fall out from MS. I'd like to be able to forget I HAVE the damn disease for a bit...I don't think that's too much to ask.
I don't know exactly when I'll be starting the Tysabri, but I'll keep y'all posted. Oh...and of COURSE I'll keep you up to date about the situation "Down Under"...it's just soooo fascinating! LOL
Back to staring at pictures of ice sculptures...
Father Time will be waking me up in the morning, tapping me on the shoulder, and adding yet another year to my life's resume. Yep, I'm officially 42 Sunday morning.
So, in honor of my 42nd birthday, I thought I'd share with you 42 things I have learned during my 4+ decades of earthly travels. Please keep in mind, I'm no Andy Rooney!
1. Sometimes love hurts.
2. I WILL eventually come to the attention of authorities if I drink too much.
3. It’s OK to say, “I didn’t want to have children”.
4. I am replaceable at my job.
5. There’s always someone waiting to step in where I leave off.
6. My mother was right about one or two things.
7. I don’t really understand events until they happen to me.
8. I wouldn’t change most of my life’s choices, even if I could, because they brought me here.
9. Family is important, but friends are a necessity.
10. I am not a “morning” person.
11. Sunrises are almost as spectacular as sunsets.
12. Memories change over time.
13. Time DOES lessen many wounds.
14. Every loss is not a crisis.
15. It takes a bigger person to say, “I was wrong”, versus, “I’m sorry”.
16. Relationship break-ups are not the end of the world.
17. Nobody really cares what I think, but they pay close attention to what I do.
18. Hondas really ARE better than Toyota.
19. Being true to one’s self requires knowing what’s personally true.
20. The human spirit is a remarkable force.
21. Fighting and war only produce wounds, not healing.
22. Self-exploration can be financially expensive!
23. Life looks different when I’m older.
24. Quiet and alone time is not a luxury. It is a necessity.
25. Algebra really ISN’T something I’ll use my entire life. I told you so, Mr. M! (My high school math teacher)
26. Looking good is optional. Feeling good about myself is a priority.
27. Getting a full night’s rest changes my daily outlook.
28. Everyone has an agenda…even if their agenda is to have NO agenda!
29. Focusing only on details blurs the big picture.
30. Fat WILL deposit wherever it wants to.
31. Body parts DO get worn out with age and wear.
32. MS probably won’t kill me.
33. It really IS OK to have a computer in my home.
34. Global warming is real.
35. Politicians get paid more than I do to protect my salary so I get paid.
36. Justice isn’t always about truth.
37. I do miss my parents now that they’re gone.
38. Time speeds up with each passing birthday.
39. Having a routine/structure in my life is very important.
40. People I dislike are my best teachers.
41. Having the last word isn’t always the most important thing.
42. Connecting with another person’s heart/soul sustains me and brings great joy and peace.
Who knows what I might learn by next year! Have a good one...
Perhaps I should have titled this post, "There Are Two Sides To Every Story"...it seems more fitting.
I just watched the local evening news and my field of practice (and specifically MY office) was once again blasted by a one-sided report on mental health services in Seattle and Washington State. Now, it IS 97 degrees here locally, so this may be contributing to some of my "hot under the collar" response...I suppose I COULD say that if I had more than a sport's bra on and shorts to stay cool (don't even go there...it's an unpleasant sight!).
Most of you know I work in some wacky government division of mental health services in Washington State...I don't blog about it for two reasons: 1) Confidentiality laws prohibit me from sharing work stories and, 2) It would just be in poor taste. But I'm just too hot under the collar (and under my sport's bra) to let this evening news report slip by without a word or two in support of ALL HEALTHCARE WORKERS, past or present, who tolerate the one-sided, biased, shit-stirring (can I use that word here without censor?), politically motivated, sensationalism-provoking, uneducated, and misinformed CRAP that makes headlines these days just to promote television station ratings!!! I suppose here would be an opportune time to say, "I'm just sayin" and hope no one sues me over this one...
As someone who has worked in the healthcare "biz" for the past 20+ years, I feel quite qualified to say, "What you see on TV ain't the whole story". We are constantly bombarded with sensational news about murderers with mental health histories, healthcare workers making life-threatening mistakes, hospitals and doctors who failed to diagnose correctly, and a number of so called "drama stories" to raise public awareness. I'll just stick to the mental health side of things because it's what I know best.
Cold, hard facts: Nearly 1 out of 3 Americans have a "mental health history"...if you've ever taken anti-depressants, YOU have a mental health history. The majority of violent crimes in America are NOT committed by "mental patients"...they are committed by criminals, pure and simple. Domestic violence is NOT a mental health issue...it is a crime. Although I seriously wonder about the mental health of women (and men) who stay in violent relationships. Homelessness is not a mental health diagnosis, although some homeless people certainly have mental issues...try living on the street for more than one night and I bet we'd ALL feel a bit "crazy". There is no CURE for most mental disorders...only treatment, which usually requires long-standing drug therapy and/or psychotherapy. Treatment compliance among the mentally ill is quite low for many reasons, which I will not go into now (But imagine you are told you have to take several pills for the rest of your life to control the voices in your head that are telling you NOT to take the pills!).
Now, specifically to my department: My office sees the sickest of the mentally ill into the thousands of referrals. There are never news headlines of the daily lives my coworkers influence, change, and perchance even prolong. These "success" stories are never told. Occasionally we are thanked for our contributions, but more often than not, we are cursed at, spat at, yelled at, swung at, and are general targets of animosity for the community at large. We do not get "quota bonuses" or any financial bonuses at all. We go to our homes each night hoping we have made a difference and praying we have made the "right" decisions. We do the work that we do because we CAN...it's what we know to do...it pays our bills just like any other job...and we have genuine interest in the field. I'm not even going to touch upon the word "care" here because it's over-rated and over-used in healthCARE. My coworkers (and dare I expand and say even doctors, nurses, psychotherapists, accupuncturists, spiritual guru's, etc.) are no different than the people we see each day...we put our pants on the same way and we experience the same bodily functions (no visuals provided about "potty" ettiquete here!) as our clients/patients. We simply are hopefully functioning at a bit of a higher level than the people we see with perhaps a more objective view. What seems to be left out in the news however is, WE HAVE FEELINGS, TOO...we are human.
I blogged way back in March or April about how I used to go to my doctors and expect them to "fix" me, but how I now expect them to "consult" with me...by chance, age and experience in the field of healthcare helped me make that switch for myself. I recognize my doctors are human beings...they make mistakes...they don't know EVERYTHING...and they are certainly not "god" to me. I get caught up sometimes in my own fears of my Multiple Sclerosis diagnosis or symptoms and I desperately WANT them to fix me, but I know this is not in their power or their role to do. I try to remember to say, "thank you" even for the little things I've grown to expect (like just returning my phone calls). I have learned it is only I who can take responsibility for my destination...my psychiatrist, therapist, neurologist, nurse practitioner, etc., can only take me through the course of "Driver's Education", but I am the one steering my own car (and I get very upset if they tap on that secret brake on their side of the floor board!). I'm still learning this lesson and I'm certainly not perfect at it...but I think we ALL could use a good lesson now and then about steering our own vehicle (and you thought I had no point at all to this blog?!?).
SO...to all of you past or present HUMAN healthcare workers out there...thank you. Thank you from the bottom of my heart for the work you have done or continue to do. Your thankless and tiring hours of service go unnoticed by most, but are treasured by a select few. There are always two sides to every story...but you already knew that, didn't you? You just rarely ever get to TELL your version...
I must share this quote with you before I close...it comes from another MS blog site, http://blog.healthtalk.com/ms/ , and I apologize for plagiarizing (not really): "You learn that the only cross to bear is the one you choose to carry and martyrs get burned at the stake".
And now I'll close this rather "cryptic" blog...because due to confidentiality laws, I cannot openly write what's REALLY on my mind (and it would also be in poor taste). I will just have to seek solace in knowing some of you canread between the lines and even if you can't, you're smart enough to get the gist of things.
It's cooling off here already...how 'bout that?
Thanks for the kind emails, comments, and calls of concern this week...I HAVE been under the weather and now IN it! It seems there are more of you out there who read this page of blathering than I realized and I DO appreciate your concerns!
Gastro situation seems a bit improved...at least I haven't had fire hose diarrhea for 12 hours now and my "Burny Butt" syndrome is lessening. TMI??? Just thought you should know...
I decided to go against medical advice yesterday and STOP the GI meds as they were not helping me and only seemed to make my situation worse. I have a bottle of Prednisone at home (left over from another period of "non-compliance") and started taking that at a low dose...I believe I may have yet another undetected autoimmune disorder, this time in my bowel, so it seems logical to me to try the steroid since nothing else was helping. I sent my neurologist an email telling her of my plan...she told me NOT to do it because, "You don't know what you're treating". I replied with my best logical answer, "And neither do you!" Did it anyway...so far, she hasn't fired me as a patient, but said patient pink slip could be in hand!
Long story longer...my ARNP consulted with a GI specialist right before she WENT ON VACATION on Wednesday (what's up with my practitioners skipping town when I'm in crisis...this appears to be a pattern!)...we tried the anti-diarrheal meds...they didn't work...she left another ARNP on call for her (who has no IDEA who I am) who politely told me to "push fluids" yesterday morning...this sent me over my precariously narcotic, drug-induced edge...I decided I would need to take matters into my own hands, which I did. My labs on Tuesday were all within normal range (stool sample results not back yet as I assume the technician "handling" the product was rushed to a local ER after opening the package and never completed the test), except my good ol' potassium was dropping AGAIN...it seems I couldn't hang onto a bit of potassium if my life depended on it (and it DOES depend on it occasionally!)...I've had no appetite, mild nausea (except for dry heaves on Wednesday), malaise, weight loss (a positive side effect), and DIARRHEA that would give Niagra Falls a run for it's money (pun intended)...thus my steroid/Prednisone decision...NOTHING ELSE WAS/IS WORKING so why not try something that's sure to boost my appetite and give me a bit of energy?
I did it...I feel better today...can't say I'm exactly hungry, but food is not repulsing me. I suppose if this is a virus, today "could" have been a turning point anyway with or without the steroids...whatever...the point is, I FEEL a bit better and I'm going to continue to "play doctor" on myself (not nearly as fun as what I remember with the neighborhood kids at age 10) until I can get IN to see a GI specialist and resolve this gut stuff once and for all...or at least have a diagnostical reason to complain!
If there is a somewhat rusty star (note picture) hanging in my sky these days, it is being informed Tysabri has now been released, my neuro's clinic should be certified on Tuesday of next week, and after taking down a tree of paperwork, I "should" be starting the drug in the next month. I don't know if this is a good thing or not since it could kill me, but....whatever! At least it is a hopeful change as my current functioning/level of disability is tapping on my nerves (isn't that a great MS line?) and maybe the Tysabri will slow this progression.
Today it's supposed to hit somewhere between 90 and 95 degrees in Seattle. For those of you already sweltering in 100 plus temps, I apologize for whining. But WE HAVE NO AIR CONDITIONING HERE!!!
So...if I don't die of heat exhaustion and bloat up like road kill, I'm hoping my gut may be on the mend and I will be able to return to work this weekend. And, of course, entertaining you via blog!
Wish me luck...
Nope. I'm not talking about Australia. I'm referring to what's happening "down under" in my gut! Something is lurking down there and giving me fits.
I've been feeling lousy for the past few days with horrific gastrointestinal problems. Of course, everyone's FIRST response is MS..."It must be Multiple Sclerosis". I'm really sick of hearing that response to every physical complaint I have.
So, today I finally went and consulted my favorite nurse practitioner, Nurse Payne (no joke, that's her name!). It's always good to have a "non-MS" set of eyes take a peek under the hood. She PEEKED all right. She poked. She prodded. She put her fingers literally where the sun doesn't shine. Frankly, she's one of the best body mechanics I know!
Now I wait for the results...the phone call to tell me either nothing is wrong or, "We need to talk". It could simply be a virus or it could be something more serious. Either way, I just wish the symptoms would GO AWAY!
Just once, I'd like my symptoms to have nothing to do with MS...I'm sick of MS taking center stage to all my complaints. I'm tired of everything being shrugged off on MS just because I HAVE it.
I'd also like to formally apologize to that poor lab technician who will have to "deal" with that nasty "specimen" I left at the clinic today...trust me...it was NO Christmas present!
I went to an Asian restaurant yesterday and came home feeling quite ill...actually, I wasn't feeling all that great before I went there to eat with my friend. Unfortunately, I've spent the past 24+ hours feeling sick...I won't go into the gory details, but lets just say I haven't been able to move more than a few feet from my toilet!
At one point today, I think I got delirious and emailed my neurologist with a request for a lethal injection! I was trying to decide if I somehow got infected with bird flu or mad cow disease...these are the things my mind wanders to when I feel unwell!
Anyway...must cut this post short and go visit my friend, The Porcelain God...
July 2006
Dear Christians, Jews, & Muslims (and any other fanatical World Religion),
I am writing this letter to you to plead with your followers...for the love of God, will you just STOP IT!?!?
I cannot even open a newspaper or turn on my TV today without discovering harrowing tales of your many bloody adventures. I am just sick of reading about your many bombs and killings and wars all in the name of your "religions". I'm tired of seeing images of bodies ripped apart by suicide bombers, abortion clinics on fire, families obliterate by acts of genocide, and the everyday mayhem you are causing in the world, all in the name of your "God". For the LOVE OF GOD, take responsibility for your actions and stop placing your acts of hatred in the name of your "God"!
I'm sick of hearing your interpretations of what Jesus or Muhammad or Moses would do. THEY ARE DEAD. You have no earthly IDEA what "they" would do in these chaotic times. What you DO know however, is NONE of these peaceful warriors advocated war and killing and hatred...that is, I should say you would know that if you've even READ any of the multitude of writings they left behind. But I imagine you HAVE read certain paragraphs of the Bible, the Torah, and the Koran...maybe even the entire books from cover to end. The only problem is, you've managed to somehow twist and INTERPRET these writings and use them to promote your own greed and hatred!
Jesus, Muhammad, and Moses didn't give a crap about money or land or accumulating "stuff" and they certainly wouldn't have killed someone to get it. They advocated PEACE. They advocated LOVE. They advocated everybody just getting along and coexisting. I imagine wherever they are now, they are all three full of disgust and shame in watching you twist their names and beliefs to fit YOUR needs of destruction and war. I can't speak for them, but I'M JUST SAYIN'...
So, what WOULD Jesus do or Muhammad do or Moses do in modern times? I'd like to think they'd tell you followers of established religions in their names to KNOCK THIS SHIT OFF! But instead of asking what three deceased prophets would do, how about you start asking what YOU should do? Try it out...just fill in the blank..."What Would _____ Do?" Put your OWN name in there...dig deep in your hearts (if you still have one). What Would YOU do? What "should" you do? Therein lies the answers to your many problems and believe me, it's not your "God's" fault...
Sincerely,
A Concerned World Citizen
OK...It's a long story, but I'll see if I can shorten it! Three weeks ago (when I was still feeling steroidally good), I decided I would install a ceiling fan in my living room. I've done this dirty deed before about a half dozen times for friends and family, so I thought nothing of it...I was only worried if my arms and legs would hold out for the task, but otherwise I felt just cocky enough to "get 'er done"! And it WAS hotter than hell in Seattle then, too.
I took down the light fixture, only to discover there was not an appropriately attached electrical box in the ceiling. It was near 90 degrees at the top of my ceiling, so I sweat heavily, swore heavily, and finally abandoned the task, deciding to eventually call an electrician to assist.
At the 4th of July Bash party at my house, one of my coworkers got the bright idea HE could install the box with some fancy pants gadget he saw at a hardware store. I decided to give him a try to "get 'er done". Oddly, this "coworker" also serves as one of three supervisors at my place of employment, so I was somewhat hesitant to have him at my house alone...I'm just that way...always cautious of the many boundaries and lines I draw in the sand. Heck, until my party, he thought I lived at the address my work has for mailing purposes...it's a post office mailbox downtown! Call me paranoid (or anything else derogatory!)...
So, to avoid a strangely awkward situation at my home, I made Saint EB show her face around the time we were going to put the box in the ceiling and "get 'er done" today. She arrived her cheery self, carrying breakfast treats and good tidings...I made coffee...it's just what one does in Seattle.
My other neighbor and coworker shuffled over as well, smelling coffee and pastries, and my quasi-boss man arrived to attempt to install the electrical box. Two hours later, I had a brand new, shiny electrical box securely fastened in my ceiling and ready for a ceiling fan!
My quasi-boss man was exhausted from the labor of it all...the three of us "ladies" who watched and made important comments while he perspired we also worn out. So we decided it was time for another necessary break and we went to lunch. Quasi-boss man had other personal tasks to tend to in the afternoon, so Saint EB and I returned to my home determined to "get 'er done" and hang the darned fan.
As you can see by the picture, we DID succeed! I, of course, invented a few new swear words in the process and Saint EB had to say a few "hail Mary's" for my soul's redemption. But...WE GOT 'ER DONE!!!
I'm sitting now in my living room under the blades of my twirling fan...the temperature in my home has dropped significantly and I may have to put a blanket on me just to stay comfortable! LOL
I'm actually tired in a "good way" from the efforts of today and so thankful to have such gracious helping hands and hearts in my friends. It's funny how MS has helped me "open up" a bit...I have allowed people to help me more and to BE more present in my life with me. Who knows...maybe one day I'll even have a published phone number AND an address instead of everyone referring to my secret address as THE BAT CAVE...I rather enjoy the privacy and intrigue however, so I don't expect this will happen soon!
******
It is with mixed emotion I let you know I had NO bumble bees in my house today...I rather miss the little dare devils...I thought you all should know.
I think I've officially gone "brain dead"...flat lined EEG...no activity upstairs...the horse has left the gate without the jockey...nobody home. If I ruled the world today, I'd decree the day to be a holiday called "Stay Home And Drool Day"...alas, I barely rule my own household, let alone the world!
TGIF is such a catchy group of consonants these days (Thank God It's Friday, for those of you still in the dark ages of "cool"), but somewhat meaningless for those of us who feel brain dead and/or do not work the typical 5 day week. It IS true...this week my Friday really DOES fall on Friday and I don't have to report back for duty until Monday. But Saturday and Sunday will be no holidays either...these are the days I spend recuperating from the previous week, doing laundry, cleaning house, paying bills, etc. For someone with MS, just getting through a weekend of NO WORK can be a difficult task!
Right now, I'm writing this blog before work and trying to figure out how to use the old boy scout (or girl scout) trick of rubbing two sticks together to create a fire...I'm hoping I might be able to do that with my brain cells. Rub a couple of cells together that are still "active" and hopefully create a meaningful spark I can rely on to get me through my work day!!! I'll let you know how it turns out...
That's right...my back side is feeling a bit chapped after my work day today. I bought the roll of duct tape for the the staff meeting today, but forgot to take it to my table...consequently, MY experience of the meeting wasn't memorable!
I'm tired, I have bees in my wall, it's raining in Seattle, and my body aches...perhaps I should have considered posting a "No Whining" photo here...
In a complete and shameless plagiarizing move, I borrow (or steal) the infamous words of White Lightning Axiom: Redux AKA Mdmhvonpa, "Work is snapping at my rear like a starving piranna", posted June 6th on his website. If you MSers get a chance to do a drive by on his blog, it's a great read.
Yes, work IS snapping at my rear this week and I'm not exactly certain why. I have had a fairly complicated week of cases requiring a bit of finesse and good old fashioned prayer that all would be well with my charges. I am having to go into work an hour earlier than normal for me this week, I work an evening shift today and turn around to report back in at 8:30AM tomorrow for the dreaded staff meeting (or "stiff" meeting...it's all a matter of perspective!) and STILL work another nine hours. On Friday, I return to my "normal" hours, but I will be doing another difficult solo stint, running from ER to ER investigating cases. I don't believe my weekend can come soon enough!
The bees have slowed down in their steady mission to escape the innards of my wall via the INSIDE of my home...I'm still doing the catch and release method in an altruistic fashion to save my planet. Personally, I think they may have slowed their escapes because it has begun to rain again in Seattle and even Seattlites don't like to be out in the rain much.
My lower back and hips are still giving me fits after a week of "hoping" the symptom was just a hormone-induced moment...I now think perhaps the "MS Hug" has returned to pay me a visit and it will stay on as long as it chooses. It's too bad this type of "hug" doesn't feel more warm and comforting! This, along with a feeling I cannot get enough sleep is a bit troubling...I don't smell relapse in the air just yet, but I am sniffing around with some trepidation.
If a post appears on this blog tomorrow, it will be a miracle...or perhaps my evil twin will find time to bang out something entertaining while I rest my weary bones on the sofa and watch tasteless TV in the evening! Wish me luck...I'm headed back into the mine without a canary...
Today, I find myself in deep contemplation about life, and friends, and losses...but also about comforts, and joy, and the beauty of the human spirit. I seem to have several friends who are experiencing very difficult and trying times in their lives right now...some are experiencing the losses that come with Multiple Sclerosis, some are experiencing changing relationships, and still others are experiencing the memories of the loss of loved ones. A few of these friends are acquainted with one another and still others are many miles across the United States and even the world. None are aware of the heartache the others have shared with me...I am the common denominator between these friends as they share their sorrows and grief.
I am once again reminded how resilient the human spirit is and how sacred is the bond of friendship. I am blessed to know these individuals as friends and feel such privilege to be allowed glimpses into their most deepest places of feeling. Although saddening to be an observer of their utter turmoil, I am still quite honored. Because I am not a part of the mystery they are discovering, I can easily hold a place for them, be a listening ear, and lend a shoulder for tears...a position I hold as sacred in the act of friendship.
I pray I may never lose sight of ALL of the life around me...that I never become so self-absorbed in my own world of MS or hardship that I can no longer hear the cries of others or feel the hands of those needing my grasp. I pray I can always be to my friends and loved ones what they have always meant to me.
One of my dearest friends who reads this rambling blog religiously recently shared with me a piece of their grief and darkness with me. The exchange reminded me of a Rainer Maria Rilke poem...the very poem another dear friend shared while walking beside ME during a period of my own grief:
It's possible I am pushing through solid rockIn flintlike layers, as the ore lies, alone;
I am such a long way in I see no way through,
And no space: everything is close to my face,
And everything close to my face is stone.
I don’t have much knowledge yet in grief—
So this massive darkness makes me small.
YOU be the master: make yourself fierce, break in:
Then your great transforming will happen to me,
And my great grief cry will happen to you.
I just got back from a 1.5 mile walk/stroll/stumble/cardiac event...I decided it is time I try to get moving again and start oiling up the ol' muscles and bones with some good old fashioned exercise. It's been nearly 4 months since I've attempted ANYTHING remotely physical, except yard work...it's been 4 months since my last relapse came to pay me a visit and stay on awhile.
I woke up this morning a bit disappointed I only had 3 bees in the house...even the bees are moving on with their lives. I assumed this might be a "sign" I should attempt to do the same...get my arse in gear and stop using my MS as an excuse to remain inactive.
Now, don't get me wrong...I have NEEDED to be a bit inactive these past 4 months just to maintain enough strength and energy to complete necessary daily tasks such as working and other survival skills. My body has NOT been cooperative with me...it has been calling the shots.
I don't often know how to determine when inactivity becomes pure, detrimental inertia and when inactivity is serving a healing purpose. I just know today seemed like a good day to test myself with a bit of exercise and see where it takes me...all the signs told me "go for a walk" so I did. I am hoping this is just the beginning of a return to many more positive steps toward my flight into wellness...I just don't "do" sickness all that well and would like some sort of energy back to do some fun stuff. It's summer in Seattle after all...and it's a beautiful one at that!
I still have plans to walk the Seattle Half Marathon in November this year. I've walked 3 of them in the past, but have had to skip the last two years because of MS problems. It's a 13.1 mile walk through the hills and streets of Seattle...I have discovered it is not necessarily the 13 miles that are the killer, but the final .1 mile that nearly does me in! LOL I figure if I start my "training" now (which consists of walking several distance walks...but no real dietary changes...don't worry!), I might just make it by November. A few of my friends plan to go with me, so that is even more incentive to get off my butt and get moving...MS willing.
I'll keep you posted on my progress (or lack of it!) in the next few months. It's just something I feel I NEED to do again just to say I could/can...I'm sure y'all have goals like that in your lives, too. Multiple Sclerosis does that to us...we either become determined or we die.
Three cheers for the determined...
One of my dear friends with Multiple Sclerosis recently sent me an email, which contained the following two paragraphs:
“Linda, I am really tired of the medical situation. I have started asking myself "what did I do to deserve this?" and "what could I have done differently not to have it?" Do you ever ask yourself those questions? So many questions with no answers and I know there won't be any answers in my lifetime.
This is a really a hard time for me and I am doubting just about everything and everyone these days. The world has gone to hell in a handbasket, the economy is in the toilet, and life sucks in general.”
You might think by reading those two paragraphs, my friend is suffering from some kind of major depression. I don’t believe this is the case. She’s just “telling it like it is” for her and eloquently stating these troubling questions we ALL ask at one point or another in our struggles with MS. IT’S NOT ABNORMAL TO HAVE THESE THOUGHTS OR TO ASK THESE HARD QUESTIONS. It IS unhealthy to ignore them, however.
I asked her permission to reprint this part of her email in my blog because I DO think it is important to not only talk about these hard things, but to also explore our own, individual answers to the questions. And yes, S, I HAVE asked myself those exact same questions at various times along my path with MS.
So, let me first address feeling “tired of the medical situation”. It is bad enough we Msers have to struggle not only with the disease itself, but also with the multilevel complexity of OTHER problems MS brings to our lives. MS has a way of worming itself into ever aspect of our living, from our jobs, to our relationships, our financial stability, and so on. MS creates a “medical situation” that none of us were given any kind of handbook on how to cope. It is tiring…it is EXHAUSTING to suddenly be forced into an arena of medications, tests, expenses, treatments, and not have someone be able to tell us, “This is going to cure you”, or “This is going to make things better”, or even, “This will have an end”. The medical aspect of Multiple Sclerosis can be consuming at times, especially when in relapse or progressive disability. It does make “life suck in general”.
“What did I do to deserve this?” Come on, kids…we’ve all THOUGHT that question in our minds even if we haven’t actually SAID it out loud. What DID I do to deserve this? My personal answer to this question currently is…nothing. I didn’t DO anything to deserve this anymore than my sister, who was killed in a car accident, DESERVED to die at age 33. I don’t think blaming her (sister) for driving my nephews to a doctor’s appointment and accidentally hitting a patch of ice was anything she could have predicted or prepared for. It wasn’t out of recklessness she slid into oncoming traffic. She hadn’t committed any kind of horrific crime to deserve to be punished by death. She didn’t DO anything, except be where she was and die.
I have MS. I don’t believe I DID anything to deserve this disease. I don’t believe God is paying me back for some transgression I might have committed. The “God” I know doesn’t get It’s jollies from petty paybacks. I don’t believe my MS is any kind of “test” either. It’s just a damned disease that I happen to have and I don’t think blaming my European ancestors or my parent’s genes is quite the answer either. MS is no different than the appendicitis I had, or the mononucleosis, or the viral meningitis I contracted. I just GOT that stuff because I lived where I did at the time I did with the people I lived with…STUFF HAPPENS. And I’m sure there may be some larger purpose to it all, but I’m not sure I’m really supposed to know what that purpose is right now. I do believe God keeps “secrets” sometimes…but probably because I’m not evolved enough to “hear” about them.
“What could I have done differently not to have it?” Hmmm…obviously nothing. Because I believe if there WERE things along the way I COULD have done differently not to have MS, I probably would have chosen to do them. Human beings are amoeba-smart that way. Even amoebas are smart enough to move if you poke them with a painful stimuli. They won’t necessarily move otherwise, except for food, but poke ‘em with a stick and they’ll try to get away.
Hindsight is 20/20…wasn’t it dear old Winston Churchill who said that? Smart man. Looking back on my life, I can “see” all kinds of things I have done that have taken me down the path I am now on…and I’m not sure if I could, I’d change much. I got poked with a stick a few times, I moved about, I remained stationary…I lived the life of a human amoeba. It’s what we know to do. It is what we’re wired to do. We make the best choices we can in the time and circumstances we are in and we call it, LIFE. I’m sure in ten years from now, I will look back on today and wonder why in the hell I did what I am doing now?!? My point is (and I DO have one) I COULDN’T HAVE DONE ANYTHING DIFFERENTLY THAN I DID AT THE TIME I DID IT. To assert otherwise makes me look like a pompous ass…it also makes me look really stupid, which I don’t believe I am! Because only a stupid person or someone with a death wish would CHOOSE to do anything that they know would CAUSE MS. And I didn’t CHOOSE this friggin’ disease!
I also realistically (some would argue pessimistically) believe “there won’t be any answers in my lifetime”. I don’t believe there will be a “cure” for MS either. Sorry to all you newbie readers out there…if you’re young enough, perhaps you’ll see scientific advances toward a cure in YOUR lifetime, but I doubt very much it will happen in mine. Now, if the disease only affected Republicans, there “might” be more money thrown into research and advancement. LOL But let’s face it…Msers are small fish in a very large medical and scientific pond AND MS is not a sure death sentence like cancer used to be. It’s also not an “In Your Face” disease because most of the Multiple Sclerosis symptoms are hidden…we just look too damn good! Nothing really rots and falls off with MS or causes gross disfigurement. MSERS JUST DON’T MAKE THE GENERAL PUBLIC THAT UNCOMFORTABLE! And besides, there’s only an estimated 400,000 of us living with MS in the United States—a 2 to 1 ratio of these are women—and we’re just not “popular” enough for the big bucks funding to find a cure…if only Ronald Reagan had MS instead of Alzheimer’s Dementia…but I digress.
“This is really a hard time for me.” I hear ya, sister, and my heart goes out to you just as I know yours has to me during my hard times. It just truly sucks…it really does. It feels so incredibly lonely at times when I try to share with my non-MS friends the roller coaster of feelings MS causes in me…bless their hearts. They listen, they are supportive, they care…but they will never be able to understand…just as I will never be able to understand childbirth, or migraines, or TMJ, or Grave’s Disease, or any other illnesses or events I have never experienced.
I AM always comforted by the fact my MS-afflicted friends DO understand, even if I wish with all my heart they didn’t. To have MS is to “know” MS intimately…and even though we are all different in how it affects us, we still “understand” each other in that special language only Multiple Sclerosis provides. We speak MS to each other. We listen MS with each other. We feel MS with one another. And because of this, we are never alone. I believe this is because in the language of Multiple Sclerosis, compassion understanding, and love are the important words conveyed to one another and nothing else matters.
Namaste to you all, dear friends…and peace to you,S…
I was trying to explain to a friend of mine the other day just what it feels like to have a constant “itch” in my ankles…their eyes glazed over and I watched the second eyelid close on their toad-like stare. It was immediately apparent my friend just didn’t “get it”. I suppose in their defense, unless you’ve “had it” you probably wouldn’t “get it”.
Paresthesia in Multiple Sclerosis is very common, occurring in an estimated 87% of people with MS at some point during the course of their disease. If you’ve got MS, you’ve probably experienced a paresthesia of one sort or another. The word paresthesia describes a number of abnormal sensations just about anywhere in the body. These include tingling, prickling, pins and needles, electrical-type buzzing, burning, skin crawling, itching, partial numbness (like feeling through cloth) and a variety of neuropathic pains.
“Normal” people experience a common paresthesia also when they trap nerves in their limbs by sitting badly. The resulting numbness and pins and needles resolve soon after the nerve is released…you will hear these non-diseased folks refer to their foot (or various other body parts) falling asleep. This common event CAN happen to Msers, too…it is such a horrible feeling of tingling/prickling sensation when your foot falls asleep and you try to move or stand on it too soon!
Chronic paresthesias in Msers are often because of a misfiring between the brain/spinal cord and the peripheral nerves (the nerves of the extremities). These feelings of numbness, tingling, and prickling, etc., normally affect the hands, feet, arms and legs, but can occur in other parts of the body as well. The sensations are often very difficult to explain and occur without warning. Sometimes the sensations involve an uncomfortable pain, but generally are usually just an uncomfortable sensation. The sensation can be constant or intermittent…my “itch” in my ankles is pretty much constant.
I have learned to not even START scratching my ankles in response to this sensation…after all, there’s nothing there really TO scratch! The feeling isn’t coming from my skin. Its origin is deep within my nerves and my fingertips will never reach the source. There are a couple of things I HAVE learned to do to combat the sensation, however.
I try never to wear shoes that rub on my ankles. Why agitate an already “nervous” area of my body? Sometimes even socks can bother my ankles, so I’m careful of the weight and material of my stockings. Another helpful remedy I have found is ice. If the itching sensation becomes just too annoying, a cold ice pack will sometimes numb the area and the nerves enough to interrupt the signal from my dysfunctional brain.
Beyond these two helpful hints, I’ve found my only relief at times is simply “mind over matter”…if I try not to mind it too much, the itching matters less! I’ve found that if I draw my attention to this sensation, it feels much worse.
OK…I’ll admit it. Just sitting here typing about my itchy ankles has caused me to want to scratch them! It’s time to move on to a different topic now and distract myself…perhaps I’ll go tend my bees…
