POINTLESS

I have spent the last two evenings laying half clothed in a small enclosed space while a man other than my future husband sends pulsing vibrations through my body.  Unfortunately, this is not nearly as fun as it sounds.  First, unless you are a real sadist, the inherently unequal balance of power between me in a white flimsy hospital gown and my MRI techican welding heavy machinery and entrusted to ensure that no spare wheelchairs get sucked into the machine and KILL ME is a big turn off.  And second, it turns out that all these pulsing vibrations and jackhammer drilling was COMPLETELY POINTLESS. 

Sex with a stranger named Raul less than a month before I get married would have had more of a point than the last week of my life which has included:

A Two and half hour neurologist visit
9 hours of sleep hooked up to a little monitor that made it impossible to roll over
An hour and 6 tubes plus some little vials for good luck of blood
A hour and half with my counselor to process the above
Two hours on Monday for a brain MRI
Three Hours on Tuesday for a Lumbar MRI

For the third time in a year, for god knows which time in the last two years, I have submitted to being the medical establishment’s bitch as I have been poked, prodded, listened to, ignored, exposed and drained.  If I had a medical fetish, I’d be in seventh heaven with the gang-bang of pointless tests I have had.  I have collected my urine for 24 hours, I have fasted, I have gotten up close and personal with an MRI machine, I have played rudimentary games with flashing dots in my visual field, I have been pumped full of water, and I have been poked with sharp objects over and over again.  AND IT HAS BEEN COMPLETELY POINTLESS. 

I now know the overall layout of People magazine and I can instantly flip to the “good” parts.  I can spot a prime magazine from 50 paces and I can tell you from the look on the receptionist’s face how long I will be waiting on a given day.  My pharmacist knows me on sight and jokes with me about needing a frequent buyers card.  My favorite phelbomist knows that I like dogs, do not want to see my blood, and that I don’t do well without breakfast.

I know that I have slightly low B-12, slightly elevated testosterone, polycystic ovaries, intercystitial cystitis, neuropathies on my feet, low fasting blood sugar, an allergy to wheat gluten, and slightly elevated insulin, and at some point in my life I had Epstein bar virus.  I know that I do not have: lupus, HIV, cat scratch fever, lyme disease, an STD, high cholesterol, and that my blood work is by and large beautiful.  I have poor posture, allergies, and mild depression.  All this knowledge is POINTLESS. 

I know that a year ago, an MRI showed demyelinization indicating MS.  I also know that since my body has been unable to duplicate this feat, that calling it MS is POINTLESS because under insurance company rules we STILL DON’T KNOW what it is I have.  My charts grow ever thicker and IT IS POINTLESS WITHOUT A DIAGNOSIS. 

I know that I do not have cancer, am not dying, and am not contagious. And for this, I am profoundly grateful.  BUT I AM STILL HAVING SYMPTOMS.  But according to all these tests, the symptoms are in essence MEANINGLESS. 

Apparently the vertigo, the mind-numbing fatigue, the numbness, the difficulty balancing, the fatigue, the pain, all of this is POINTLESS according to the vast well of medical knowledge I have tapped since starting to have “issues.” 

All I really know after two years is that I gradually lost my energy, developed strange pains and neuropathies and have spent regular intervals with “flares” in which walking and other basic movements are challenging to say the least.  I have had fatigue as an ever-present warden, limiting what I have been able to do.  I have been angry, I have been depressed, and I have been despondent from the POINTLESSNESS of it all. 

I have spent a small fortune in vitamins.  I have been to Aruvedic doctors, I have had herbs shipped to me from India.  I have taken up yoga, exercise, and invested in a better bed.  I have re-arranged my life for something that STILL HAS NO NAME.  For lack of anything ELSE to do, I have attempted to give it a name myself–I have read books on Fibromayalia, on Chronic Fatigue, on Diabetes, on MS, and on Depression.  I have followed protocols, changed my diet countless times searching for the perfect formula.  AND IT HAS BEEN POINTLESS. 

I know that at one point “they” thought it was MS.  I know that “they” have always needed “confirmation” of this “probable” diagnosis.  I know that my body has refused to cooperate.  I knew, as I lay in the sheer POINTLESSNESS of the MRI tube for three hours last night that my spine was going to be beautiful.  Because the more of a WASTE OF TIME something feels, the less likely it is to yield any answers.

I know that I have “pre-diabetes” or “insulin-resistance” or “hypoglycemia” whatever you want to call a malfunctioning pancreas–this is something on which all can agree.  It is possible that all my neuropathies and symptoms are from blood sugar issues.  But of course, this is still POINTLESS speculation. 

I have seen more neurologists during a time when most 26 year olds would have as many boyfriends.  Neurologist #3, a former Navy man who enjoys long rambling conversations, loves large family gatherings, and is an avid skier is disappointed that I am not compatible with his desire to make a quick diagnosis and move on to TREATMENT.  And I’m disappointed too.  We’re not quite in the ‘it’s not you, it’s me” stage of moving away from what had seemed to be an auspicious beginning, but it’s close. 

He’s frustrated with the POINTLESSNESS of it all too.  In the 1700s he would have been able to diagnosis me with ‘nerves’ or ‘bad blood’ and there would have been some blood letting followed by a long stay at a spa type facility.  In the 1800's, he would have found me to have consumption and sent me for a stay in a warmer climate, perhaps near some healing waters, perhaps sell me a tonic.  In the 1930's, after much poking and prodding, I would probably be diagnosed with ‘hysteria’.  Amazingly in the 1970s and 1980's I would have been diagnosed with MS–in the days before $18,000 treatments, insurance companies didn’t require as much physical proof of demylinization.  In the 1990's I would probably be told that I have the disease du jour–Fibromayalgia, but the MRI might have been enough to get me into a trial for the MS drugs.  DOES IT MEAN ANYTHING?

Clanna asked me on the phone just now as I sobbed with frustation–“Isn’t it enough to say that you have a stress-related autoimmune disorder?” And the thing is, is it should be.  However POINTLESS that would be, it is the truth.  I have neuropathies, pain, and fatigue aggrevated by stress, heat, exergetation and eating poorly. And I want I want is not a NAME–I’m not looking for a sign to hang around my body.

What I want, and I what I can’t have in this limbo land is ANSWERS.  I want to know why me–I want to know what is causing this, and most importantly I want to know HOW TO MAKE IT GO AWAY.  A lot of people don’t understand why I’m not thrilled with my textbook MRI’s–shouldn’t I be HAPPY?  There is no tumors, no massive patches of demylinization, no lurking scary things that could lead to DEATH–and for that I really am immensely relieved. 

But RELIEF over not dying is not the same thing as waking up with my symptoms gone.  If a negative MRI meant that tomorrow, and next week and next month I would be fine, I would be THRILLED.  But this is not what it means.  It does not even mean that I do not have MS.  In fact it may be YEARS before I get the “definitive” diagnosis that leads to treatment–treatment which I am not even sure I WANT–but that I want to at least have a CHOICE about. 

Next week, I will continue my POINTLESS saga that has led me in search of snake oil and charlatans and I will have a spinal tap.  If as I suspect, I have pristine, lily white spinal fluid with no indication of either diabetes or MS, limbo land continues.  The “assumption” will be that the blood sugar problem is the root, but assumption still leaves wide swathes of DOUBT in which I can hunt for answers that might make this whole thing go AWAY. 

If you tell me this is what I have, and there’s little we can do, well at least I know THAT, and I can attack THAT with everything I’ve got to beat it back the best I can.  But if you keep telling me “probable this” and “assuming that” and “given this” and “monitor that,” I’m going to go CRAZY not knowing what to fight, how to help myself, how to see myself. 

Do I look in the mirror and see the face of a hypochondriac?  Do I tattoo PSYCHOSOMATIC ILLNESS to my forehead and apologize for being NUTS? Do I see myself as a statistic in the looming diabetes epidemic? Do I see myself as an MS survivor? Do I see myself as NUTS? Do I nurture my body because it needs HELP or do I kick it into high gear and send it to boot camp because my BRAIN needs help. 

I’m sure I’ll have LOTS of time to ponder this while I am FLAT ON MY BACK for 24 hours next week following a spinal tap–which I am sure will be POINTLESS and very, very NEGATIVE.  Just like me. 

Comments

[sarah]

I hear you. The frustration and aggravation and just plain goddamnation are too much. Whatever the name of the beast is, that you are not 'lucky' enough to know, I am sure that you are doing the right stuff with your body care and honest dealings. Much better days than this one lie ahead.
: P
xoxoxoxo

[natalie]

i only know partially what you're going through. for 4 months before my ovary finally ruptured & they realized i had cancer they had no clue what i had. they taught i was have brain seizures (hence why i had hours of zoning out), severe anemia (that's why i got all those shots..they didn't realize i was hemoraging on the inside), etc.
i can't imagine not knowing for YEARS. oh you poor dalin'...i'll say a little prayer for you that you at least find out *something* definitive.

[Old Horsetail Snake]

Wavy: Look on the bright side: When they do the autopsy THE REST OF US WILL KNOW what you got. So that's the good news.

(Honestly, I am saddened by what you're going through. Hang in there, kid. Someday.....)

[iliana]

I'm sorry Wavy! That is the worst -- the not knowing what in the hell is going on. I tend to get very neurotic when it comes to health issues - before I know it I've self-diagnosed myself with whatever I find on webmd.com. So don't do that! ;)

Wishing you wellness.

[MommK]

Sorry you are going through all of this. I too would be going nuts. (I am a webmd junkie and I dont even have many good symptoms yet!)Hang in there :-)

[tanya]

I've been remiss with commenting, but your entries this week have been great. (Apart from all the medical encounters, I mean, which are naturally no fun - you've just written really engagingly about everything.)

Thinking of you!

[Kimberly]

Oh, this sounds familiar. Five months to diagnose my husband's oral cancer; it has been a year ago today since his surgery to remove it. The not knowing is so hard. I hope that you get answers soon.

And, by the way, you write beautifully about the process.

[Sandra Cobb]

I've had fibromylia for I know fifteen years, and as a child had shingles twice. I suffer terrible, but keep on ticking. Good luck to you, Sandra

[mary]

Thank you for putting into words what cannot be put into words.Pointless is an amazing name for it. I get it. You helped one woman today in this pointless pain and all that comes with it. This suffering may have a point. As Jesus was a perfect man he suffered unfairly on behalf of all mankind so that one day soon all this pain will be gone. Revelation 20 and 22

[mary]

Thank you for putting into words what cannot be put into words.Pointless is an amazing name for it. I get it. You helped one woman today in this pointless pain and all that comes with it. This suffering may have a point. As Jesus was a perfect man he suffered unfairly on behalf of all mankind so that one day soon all this pain will be gone. Revelation 20 and 22

[Valinda]

Oh, my Bethany:

Me, too! After my fourth child in 2006 and a lifetime of being sick plus thinking this is just normal life. I got up out of bed and fell to the floor with heel spurs in both feet. Having reached the stage of acceptance with this condition of fibromylia, I truly ignore doctors who think I'm crazy. My children have laughed when I tell them what doctors have said to me. And then next my children say, "Is that doctor crazy?" My main objective now in life is to find doctors who have family members with this "fun thing." I found a dentist recently whose wife has it. He is so nice to me. And I had another doctor whose mother has it. These doctors seems to be much more understanding. I would never push myself again as I did in the past if I knew that the accomplishments in life are topped with the "fun thing" of fibromylia. The degree in accounting, running 10Ks, having a totally clean house, being in the military would never have been done because I have always been sick and pushing myself. I mentally and physically should have only been a MOTHER of children and a WIFE. For now mentally and physically these relationships of a loving family are carrying me over all my society accomplishments!

I have been told that my body is destroying itself by doctors. And believe me this fight against the "fun thing f" is awful getting along with compared to all my life's accomplishments. In others words giving birth ends sometime but FIBROMYLIA DOESN'T.

Always,
Valinda