Saturday, February 28, 2009
1) Began a week and a half ago with dizzy *spins* episode...I fell and hit my head rather hard as a result of the first onset of dizziness (see previous post on *goose egg*)
2) Fatigue began to worsen around the same time as the first episodic *spins*, gradually becoming severe and debilitating
3) Dizzy/*spins* returned on Tuesday of this past week, worsening...creating moderate nausea
4) Left eye tic
5) Increased confusion
6) Decreased sleep/insomnia
7) Anxiety...resulting from continuous dizzy sensation
Let me apologize now if this post reads in disjointed fashion...it's just the way my brain is working right now. And it is taking all of my effort to look at my laptop screen without feeling urges to vomit (no, NOT because I am horrified by what I am writing! It's the light/movement of it all, silly).
Yeah, so I've been feeling like cow dung on a hot, summer day at noon...smelly and repulsive...for the past 5 days...and not a medical professional among us/me can unlock the mystery as to WHY. Gawd knows there's been valiant effort to do so...thousands of insurance dollars have been sucked up by the health care system monetary vacuum just this week in an effort to answer the mystery question: Why? And what?
I've mentioned before in this blog that I would sell my own mother for the promise of never having to feel nauseated/vomit again. I ABHOR that feeling with great passion. I have been known to stand barefoot in snow drifts to keep from hurling...for some odd reason suffering near frost bite seems to shut down the part of the brain that controls upchucking...just something I learned along the way of my *NO HURL* rule.
So, you can possibly imagine the utter horror I began to experience when the dizziness returned with a vengeance on Tuesday, causing waves of nausea to set in? I IMMEDIATELY and without delay consulted Dr. She Who Will Not Be Named...she emailed me to say she thought I was experiencing "post concussive syndrome" from hitting my head. I emailed her back a not so pretty reply saying she wasn't listening to me/reading my typing closely...I WAS EFFING DIZZY BEFORE I HIT MY HEAD, WHICH WAS THE CAUSE OF ME HITTING MY HEAD IN THE FIRST PLACE LAST WEEK!!
A long saga could grow longer at this juncture...suffice it to say, I begged a spot on the good doctor's schedule on Thursday and went in to see her kindly associate (Dr. SWWNBN also had to poke her nose in my room/business, probably feeling slighted that I had questioned her not-so-well-thought-out response in email and was choosing to attach myself like disturbing fungi to her more kindly associate).
Dr. SWWNBN's kindly associate did a full neuro exam and was puzzled. I was NOT complaining of vertigo (had that before and never want it again!), but instead dizziness. My blood pressure was elevated, my left eyelids felt like a ticking time bomb but I was not experiencing nystagmus (eyeball tics), and I was beyond fatigued exhaustion...I was also told my pulse was "thready" and K.A. (kindly associate) discovered I've been walking around with a heart murmur probably since birth (I dunno...doncha THINK someone might have found that benign heart defect BEFORE during one of the multitude of tests I've had in the past?!??!). K.A. went and fetched Dr. SWWNBN and they both sat and stared at me for several minutes.
Threats of medical tests flew wildly around the 6 X 8 exam room...a threat of hospital admission was quickly squashed by me...threats to send me to the ER were also *poo-pooed*. I wasn't dying...I just WANTED to.
I had stat labwork drawn...this resulted in finding a low normal TSH level (thyroid stimulating hormone), but it was STILL within normal limits...probably not the culprit behind the symptoms. I passed my neuro exams relatively well...this (whatever THIS is) wasn't feeling completely neurological in nature. The thought my heart could be malfunctioning entered the picture.
I consented to a repeat echocardiogram on Friday (I was on Novantrone at one time, which can cause cardiotoxicity, aka, congestive heart failure) as well as my five hundredth gazillion MRI and something new, called an MRA (magnetic imaging that looks specifically at the vessels in the brain and spine). All in all, this testing process took up about 5 hours on Friday...I was exhausted/sickly/anxious BEFORE I got the testing done and, by the time I returned home (not without entertainment from my local Somali Yellow Cab drivers) I was completely spent. I got carrying copies of my MRI/MRA (I suggest this to every MSer...keep your own dayumed copies of testing...diagnostic facilities can and will release a copy to you) and brought them home to peek. Since I've only seen like five hundred gazillion MRI's done of my brain, I feel pretty comfortable interpreting my own scans...and I saw NOTHING OUT OF THE ORDINARY MS BRAIN. No enhancements, no tumors, no gaping black holes...just my standard brain on MS and no diagnostically active disease process.
Yet, still I feel ill. And by the 5th day of dizziness/nausea/severe fatigue, I can honestly say I have thought, "I hope this ends soon or actually kills me". Food is not my friend...sleep is not my friend (because the dizziness/nausea keeps waking me or won't allow me to fall asleep)...and my FRIENDS are quickly becoming not my friends due to incessant whining on my part. :-) I have settled on the notion this must simply be something viral (although I've had no fever, malaise, body aches to speak of) OR...I have developed Somatoform Disorder or Munchausen's (psych disorders). That would STILL keep this all in my head even WITHOUT blaming the MS that IS in my head!
I did start taking Meclizine (anti emetic/motion sickness medication) at the suggestion of Dr. SWWNBN and also added Klonopin today because my anxiety was climbing toward the roof to jump (my anxiety was, not me!). I have let K.A. know if this doesn't pass soon, I will be begging K.A. for steroids to *pretend* this is MS-related just to see if the roids might assist.
And now I ask YOU, dear MS readers (all two of you): Have you ever experienced similar symptoms that were non-vertigo-esk, yet had accompanying dizziness/severe fatigue/nausea? I'd like to get some feedback if anyone ELSE has had anything similar that just won't go away (I actually believe if this were viral in nature, I would be seeing some relief by now...sigh)? I'm pretty sure this isn't my ticker (heart) even though those test results have not returned yet.
I just feel SICK, but not in a flu-like bug/germ-y sort of way...and I kind of DO want to close my eyes and just pretend I'm dead at the moment. Anyone? Am I completely alone here??? Somebody throw me a frickin' bone here and tell me this, too, shall pass...or I will...either way, I'm good with it...LOL
Thursday, February 26, 2009
Monday, February 23, 2009
Ah, yeah. I think this is what some people might call a vacation...OR mental illness. Ah, yeah...whatever...
Thursday, February 19, 2009
Monday, February 16, 2009
That's the buzz in my life right now...work, work, work...to the flower, back to the hive...suppose bees ever dream about retirement? :-)
Thursday, February 12, 2009
But, it IS nearly 1:00AM and I'm still awake tossing and occasionally slapping the illumination button on my alarm clock just so I can thoroughly TORMENT myself calculating exactly how many hours of sleep I am NOT going to get before the alarm sounds at Dawn's Crack! Why, gawd, why does this happen every time I HAVE to be rested and get up at the *other* 6:00 o'clock time, which unfortunately falls in the morning?!?
I made a deal with the devil to rearrange my work schedule this past week and teach some classes at my work place...knowing darned good and well I would have to be like Mr. Roarke (Ricardo Montalban) of Fantasy Island by 8:30 in the morning, waving my hand from side to side in my pristinely white, crisp suit, and mumbling "Smiles everyone...smiles." I could have easily predicted this week's insomnia...and now I could kick myself in the head for taking on this project. I mean, at least Mr. Roarke had a midget to help him (OK, was that TOTALLY politically incorrect to use the "m" word versus *little person*?).
It is hard for me to recall a time in my life when I DIDN'T suffer from some type of insomnia...either difficulty falling asleep or staying asleep. I think it may have been some time in my teens when I last had the luxury of a good 8 - 10 hours of sleeping ability per night. Of course, I DID have mononucleosis during those years, so maybe it was just the Epstein Barr virus dulling me into slumber?!?
I have purposefully worked either an evening job or one that would allow me to start as late as possible in the day for the past 23 years because of my problems with insomnia. Well, that and the fact I don't play well with others, which makes it *best* for me to remain out of any type of political arena spotlight...and that light shines brightest during DAYLIGHT hours! Hence, the afternoon/evening dusk-ish approach to my employment choices. Rather than be a morning song bird chirping sweetly in the tree tops, I'm more of a silent (ding) bat swooping in the shadows...it's just my style...and it has accommodated my insomnia issues nicely.
Pain has also begun to play right into my problematic insomnia like a hidden Ace in the hole...over the past 5 years of my diagnosis with Multiple Sclerosis, I have battled more and more body pain on a daily basis. And I don't bring up the issue of my physical pain to *whine* about it (I detest whiners...LOL), but rather to point out it has not HELPED me fall asleep or stay asleep at all. Pain only serves to add to my discomfort and frequent waking throughout the night.
I suppose since I'm AWAKE anyway, I could get out of bed, do something productive, and go ahead and iron my *skirt* for tomorrow/today. Because, by the time that derned alarm starts squawking at 6:00AM, I'll probably JUST be falling into a wonderful REM cycle, jump out of bed comatose, and burn my face on the iron trying to answer it, confusing the appliance with my phone!!!
Tuesday, February 10, 2009
"Mom wants you!" my sister said, knocking rather frantically on my bedroom door. I was sleeping in the same room I had been allowed to decorate myself when I was only 12...my childhood, pastel-blue walls with blue and white shag carpeting. This room was directly off the dining room and I had been listening faintly to the sounds of my sister and my mother making breakfast in the kitchen. I knew my sister was a bit on the uneven side, being 9 months pregnant and due to deliver any day.
"Linda, get up! Mom needs you!" This time she was knocking and turning the handle to my door which, even as a child, she knew would be locked...this was how I kept from lying awake nights as a teen...not having to worry about monsters and boogey men getting through that door.
"Just a minute...geez...give me a minute. What's the matter?" I said, offended by the intrusion.
"I don't know. Get up. Mom needs you. She's sick or something." My sister stayed at my door, obviously unsure what to do on her own other than to follow my mother's instructions and retrieve me from my bed.
I got up and found my slippers jammed under the lion's claw dresser in my room, still peeved to be awakened by such frenetic energy. "Must be the pregnancy", I mumbled under my breath. My sister was always known for her somewhat *high strung* emotions, but pregnancy only served to heighten this phenomenon.
I unlocked my bedroom door and emerged to the bright, winter light reflecting off the sliding glass doors leading out from the dining room. "She's in there!" my sister half shouted, pointing into the living room.
"OK", I said with miffed tone, as if to say, "Chill out, girl before you pop that baby right now." But I didn't dare even mutter that last sentence out loud. I knew better than to take on a raging, hormonal sibling.
The sound of my mother vomiting began to reverberate off the walls in the living room. I felt a sudden hint of alarm. My mother was NEVER sick and rarely if she was, she would NEVER sit in her own living room vomiting. I picked up my pace and rounded the doorway leading into the living room. My mother sat staring blankly from the couch, her eyes glassy, and holding a wash basin. She didn't even notice I had come into the room.
I knelt in front of her just as she vomited again into the pan. The force of her stomach emptying was violent and appeared painful. I recognized this symptom immediately and I felt my heart rate rise quickly and flutter in my chest. Projectile vomiting...a symptom often accompanying head injury.
"Mother! What's wrong? What's happening?" I asked her, still not wanting to believe what I was witnessing and what I sensed was about to occur.
Her gaze slowly lowered, staring in my direction, but she did not appear to register my face. "I don't know", she said faintly. "I don't know." Her final sentence trailed off as her head slumped forward onto her chest. These were the last words she ever spoke to me.
The rest of this Sunday morning on February 11, 1997, will forever remain a blur. It is probably best that my memory has served to protect me in the only way it knows how...to forget.
I remember yelling at my sister to call 911 and for my brother-in-law to come quickly into the living room to help me carry my mother from the couch where she sat and lay her on the floor. I checked her pulse. It was faint and thready. She was no longer breathing.
I remember telling her, "Mom, open your eyes," as if commanding her to do so would somehow stop the rush of blood that was pouring from the vessel in the back of her head into her brain...blood that pooled out of sight, slowly saturating vital tissue. Aneurysms heed no verbal commands.
I remember breathing for my mother when she couldn't...repeatedly checking her pulse and demanding it stay present, while my own pulse pounded in the temples of my forehead.
I remember what seemed like an eternity before the volunteer fire department arrived, uprooted from their own Sunday rituals, to rush to my mother's side.
I remember pleading with Marlin, a man I knew from my childhood, begging him to take over..."I can't do this, Marlin. Please. I can't do this."...he slid beside my mother without a word and took over the rescue breathing while awaiting someone to grab the ambu bag out of the tackle box.
I remember helplessly pacing in the hallway of the tiny community hospital emergency room, some 15 miles away from my mother's home, while hearing and watching a rush of activity coming and going from the trauma room where my mother was now laying still and lifeless.
I remember rubbing my own sternum so deeply, I managed to rub the skin raw on the bone in anxious self-comforting. I held the damp wash cloth to my face that had been on my mother's forehead, smelling the faint scent of her perfume.
I remember taking the doctor aside and telling him NOT to tell my sister what I already knew to be true...telling him to just say he didn't know the prognosis...and the doctors at the medical center where she was being transported by Life Flight would know more. He looked away from me when telling my sister this and I could see his eyes had welled up with tears. He had known my mother for many years.
I remember the sound of the helicopter landing, whirling blades that would eventually swallow up my mother and carry her 100 miles away.
I remember the first neurologist, the first EEG, the nurses bathing my mother, the breathing tube in her mouth, the multitude of people arriving and going, shaking my hand and looking very serious.
I remember being awake for 3 days...going between the labor and delivery floor where my sister now was bedded down, then back to the ICU, then calling the hospital where my father rested, not knowing his wife's condition.
And I remember other things I'd like to forget.
She also needs me now...to remember the day my mother died...so that I might always remember to have compassion in my heart for others...
Monday, February 09, 2009
Sunday, February 08, 2009
|Gaynor, Gloria - I...|
Yeah, OK...I'm feeling a bit cocky (note the little chicken dancing in the esnips box up there!) these days. I've been off all DMD medications since December 5th (my last dose of Tysabri), and I have to admit, I've been feeling pretty darned good.
More and more each day, I'm beginning to believe I WILL survive...with or without disease-modifying therapies...I AM surviving. AND, I'm actually ENJOYING living without the constant schedule of drugs/IV's/shots, etc. I KNOW!!! Scary to admit, but I'm a tad bit JOYFUL these days. LOL
Now, don't get me wrong here. I DO NOT recommend nor do I believe MY personal treatment decision is or would ever be the right one for anyone else. Frankly, there remains a tiny voice lurking in my head saying, "Enjoy it now, smarty pants...I'll get you, my pretty. And your little dog (cat), too!!" If ONLY MS would take my cat...but I digress (again)...sigh.
But, I'm also not going to sit around feeling guilty OR in suspense wondering when the next MS shoe will drop, crushing my brain into mush. For now, I'm just riding the wave...enjoying the view. I will survive. I'm not letting anything bum my voyage at the moment...
Friday, February 06, 2009
Thursday, February 05, 2009
So...my MS "allegedly" may be acting up a bit this week. I can only "allege" this statement to be true because I don't know for sure. I can't really SEE it working in my body or creating some of the minor problems I've been having...like cramps/pain in my calves and gastric upset. Certainly there is a list as long as my arm of OTHER possible culprits that could "allegedly" be causing some distress in my body. And because the issues are relatively minor (meaning: I'm not blind, incontinent, unable to walk, slurring speech, unable to stand upright, etc., = "minor"), I'm certainly not in the mood to do a thorough INVESTIGATION of the cause.
For now, I'm just going to "allege" my MS may be tapping on a couple of my last good nerves and creating some dizziness, muscle/spasm issues in my calves, pain and heaviness in my left leg...and I'm going to "allege" the gastric upset, aka, THE TROTS, has been caused by a virus spreading like butter around my office (and why DO we refer to diarrhea as "the trots"? Anyone? Too much information?).
Time will tell...in the world of Multiple Sclerosis, time is about the ONLY sure thing MS can't hide from. Until I have some cold, hard facts, my dear MS friend will simply remain under investigation. Oh yes...I'm watching "it". "It" just doesn't know I'm giving "it" the fish eye right now. Court is now in session...
Wednesday, February 04, 2009
Not like a Richard Simon's workout. I'm talking about breaking into a sweat trying to get caught up reading all y'all's blog posts from this past month!!! Dayumed near developed eye strain and I'm pretty sure I DID pull a muscle in my brain trying to think up something witty to say in your comment sections (please don't ban me from commenting...I NEED the outlet!).
My GoogleReader is now cleared once again...for a few minutes anyway...