December 19, 2008

If you don't know what agoraphobia is, I'm gonna wait right here while you go look it up.  No, don't decide to skip this one because you're too lazy to google agoraphobia.  Just go look it up.  For those of you who know what it is, or heaven forbid have experienced it, we'll go forward from there.

When I had my first seizure, the downward spiral began.  There is nothing quite as bad as the fear of being out somewhere, too far from the house, and having a seizure.  Eventually, the seizures led to panic attacks in anticipation of the seizures, and if you want to know what hell is like, have full blown panic attacks accompanied by temporal lobe seizures.

Anyway, I became agoraphobic.  For a while I could not leave the house without a 'safe' person with me.  Eventually, as the seizures came under control with medication, the panic attacks as well, I got to where the agoraphobia improved, but did not go away.

High ceilinged places were particularly difficult places to be.  I was told by an acquaintance who was a psychologist that this was common.  Even now, seven years later, I have to enter Walmart and Lowes through the garden center because the ceiling is low there.  Last week I went to the food section at Walmart for the first time in years.  I have not been inside Krogers for years because something about the place brought on panic attacks.

Until tonight that is.

I decided that if I was going to be able to walk, then I would be able to go to the grocery, and late at night when the store was nearly empty would be a good time to get things under control, agoraphobically.  Keep in mind that I had not been in the Kroger's in five years.

For those of you thinking "Why didn't she just make herself go?"

Yeah.  You try living in my shoes and then we'll have this discussion again.

I got halfway through Krogers tonight and....

BROKE OUT IN HIVES.

I have only ever had hives once in my life.  I was in anaphylactic shock.

But though I was scratching like crazy, I went through EVERY aisle in that store.

Jennifer 1  Agoraphobia zero Hives 1/2

August 20,2008

45 years old today and darn glad to be here.

This week, however, something rather funny came up.  It was a conundrum which I had not faced before.  You see, at physical therapy I have been doing bicep curls with weights.  After a few weeks of this, I actually began to form significant biceps.  Being short as I am, significant biceps along with significant boobage makes for a fight for space.

I kid you not.  The biceps and boobs aren't working.  I can't reach the other underarm to put on deodorant, the softball sized biceps just weren't going to do. 

So after explaining this to Jim, my PT and having him doubled over with laughter, as well as Sarah, another PT and my favorite tech, Lisa, I am on a special exercise regimine to stretch the biceps out, making them long and lean so I don't look like one of those musclebound weight lifters.

DD boobage can't be adjusted.  The biceps have got to go.

July 30, 2008

When giving birth to my first child, I was in hard labor for over 14 hours.  At some point I remember looking up and there were at leasta dozen people in the room.  Nursing students, a janitor leaning against the wall, various and sundry medical people, as this was in the days when only the father was allowed in.

I'm told I grabbed my husband by the collar and told him to get those people the HELL out of my room in a volume that sent people scurrying.

It was deja vous during my vaginal ultrasound yesterday.  

You see, they had a New Special Wonderful Ultra Ultrasound machine and everyone wanted to see how it worked and the person who was training everyone was there too.

Oh boy.

As if it weren't bad enough that my uterine lining had been too thick and I'd had a biopsy, and I was counting on this  one being normal so I could mark ONE FRICKIN' THING off the list of things the matter with me, the technician began the procedure and says "Oh, your bladder is too full, we need you to go to the bathroom."

I didn't need to pee.

Nonetheless, I dragged my bare bottom along the wall, holding a paper sheet in front of me from the room to the bathroom, a few feet down a hallway and squeezed out enough to make the audience happy.

Then I endured the LONGEST U/S in history.  That girl would turn the wand two degrees and there would be a chorus of "oohs" and "aaahs".  Then shortly the "oohs" became "ohs" and the "aahs" became "Hmmms" and I knew.

By the time the technician was done, she had a string of U/S pictures for the gynecologist to rival any grandparent's when asked to see pictures of the grandchildren.

Yes, the lining is STILL 17mm in spite of hormones and The Great Flood only days before which should have left it practically invisible.

Not only that, but it is irregular.    That's the word that got me.

I 'd talked big.  I was refusing a D&C before my cruise.   I wasn't having it while Steven was here.   Yeah yeah.  Who do I think I am to thumb my nose at fate?

My doctor, who is the best there is, will be talking to the rheumie, the neuro, and a team of anesthesiologists and will schedule the procedure.

I *did* refuse general anesthesia.

Now before you decide I've totally lost my mind, lupus and general anesthesia don't get along.  It takes a long time to get out of  your system and makes you feel nuts.  I hate it.  I told her I was tough and I wanted local.   She said she could do lidocaine and narcotics UNLESS the anesthesiologist had a compelling reason for general.

I figure it will be the second or third week after Steven gets home.  By then he'll be sick of us and ready to be with his friends.

Still don't know if I had a stroke.  Neuro went on vacation.  I will never understand how a doctor can go on vacation (and not tell the patients waiting on results) leaving people to wonder if they have had a stroke/aneurism/gonna die.    I mean it's just some phone calls for pete's sake.

Stay tuned.  I'm afraid to wonder what's going to come next.

June 28, 2008

And the athlete's boob jokes continue. (See the previous entry for context)

It seems my left boob has decided to become an athletic supporter.

Then they got into a boxing match....

resulting in me getting a black eye.

Then one took up dogsledding.  It was an Alaskan Malaboob.

*headdesk*

June 26, 2008

We all carry bacteria and fungi and the like on our skin all the time.  When you have lupus, it doesn't take much for the, oh, say fungus, to overcome your body's ability to deal with it.

Most everyone knows what a yeast infection is and where it occurs.  Perhaps lesser known is that one can get it in one's mouth...called thrush.  But if you are severely immunosuppressed, it can literally 'bloom' on the skin.   I get blisters of yeast.  Painful, raw, red ugly places.

Until recently, I was on the seizure drug dilantin which precluded my taking the yeast med of choice, diflucan.    Now that I am off dilantin, I showed the blistered areas to the Gyn when I went for my biopsy (benign, thank you God!) and she had a cow right there in the exam room.

For most people, one diflucan knocks it out.  Period.

I have to take six.   That's how bad the infection was.

So, I'm on day three of diflucan and still have new places blistering with yeast (candida).  This time, it is under my right breast.

I was laying without a shirt on, with the fan blowing on the sore area to help it feel better when I heard Younger Son (14) coming and grabbed a pillow and pulled it across my chest.

Accustomed to seeing me in various states of disarray, as long as the pertinent parts are covered, Younger Son doesn't pay too much attention.

"How you feeling, Mom?"

Figuring he was wondering why I was laying half naked on my bed with the fan blowing on me, I told him.  "I have those yeast blisters under my boob and I was letting the fan blow on it.

Without missing a beat he looks at me and says, "Athlete's boob, huh?"

*facepalm*

He knows that the medication for athlete's foot and candida is similar and I've been known to use his foot powder on sweaty places.

With a grin, he asked, "Wanna borrow my Lamisil spray?"  referring to his athlete's foot spray.

Only at our house could we speak so openly and make fun so good  naturedly. 

Athlete's boob, indeed.

Oh, someone will pay.

I picked up a mirror and found to my horror that I had a virtual goatee. 

As if age did not goose us women enough by saying "Hey, we're gonna let you stop that menstrual period thing you've been doing every month since you were 11, but now  you're gonna have a mustache and beard! Bahahahaha!"

*headdesk*

Steroids, for those of you who don't know, amplify this effect to an exponential power.

Then, of course, your eyesight goes, making the plucking of the goatee extraordinarily difficult, so you get a BIG GIANT SIZED LIGHTED MIRROR.

When you get out the BIG GIANT SIZED LIGHTED MIRROR (BGSLM) everyone knows you're not really plucking your eyebrows.  Really, you're thinning out the  mustache nature saw fit to give you. 

I can only feel a modicum of satisfaction in knowing that men begin to have hair growing out their nose and ears, necessitating a whirly little nose and hair trimmer.  Works great.  Gets down in the hole.  Neatens things up.

But women's unwanted hair is right out there for everyone to see.  At least, everyone shorter than you.  Or who looks at you when you're lying down.  Or who sits in a chair lower than yours.  Or who catches the light just right on your face at dinner.

Lest you think this is a whiny "clean it up, it'll be fine for a few weeks" type thing.  

Oh no.  Couldn't be so lucky.

Steroids make the hair dark, thick, and prone to growth (which is why my hair grows so quickly and makes the salon ladies happy).


But I say that someone will pay because no one saw fit to tell me that...I kid you not...I had over 1/4 inch hair growing from my chin!  That's not even counting the three rogue bandits on my  neck.

I guess I'm going to have to stand on a chair with a flashlight to have the towers I call husband and son check the underside of my chin for  places I can't see.

Yes, I've looked for a salon.  I live in small town Kentucky.   We're lucky they cut hair on the head.  They don't mess with hair on the chin unless it involves a beard trimmer.  I ain't ready to go there yet.

I remember my Aunt Faye saying something about reaching a 'certain age' and suddenly  hair started sprouting from places it wasn't supposed to.

Oh, was she ever right.  And her boys were six and a half feet tall.  She never stood a chance of them seeing it for her.

My mother said, "why don't you bleach it?"   I told her that then I'd have a white mustache and beard.

I suppose I'm going to have to bite the bullet and find a place in a nearby larger city. 

But I will dread those daily trips....

Dark Humor

When one lives in home with a disabled individual, dark humor often becomes a source of compensation, of relieving tension.  My home is no different.  In fact, for those of you living with a chronic disease or with someone with a chronic disease, I suggest you take a peek.  You might find a laugh too.  However, some of it might get a tad personal, so be warned.

December 5, 2007

Doctor Day.

It feels like there should be drums and chimes like on...what's that show? Law and Order?

I thought, as an exercise for myself, I would compare the feelings pre-Doctor Day and post-Doctor Day.

This may not make sense to the healthy.  In fact, I'm willing to bet the healthy will be thinking "that's stupid".  Heck, I think it myself sometimes.  But that doesn't make it go away.

Today is my trip to the rheumatologist.  There, I will be poked, prodded, stuck, given a cup to pee in, and given an IV injection of Boniva that will last three months.  This is supposed to keep my bones from falling apart. 

My rheumie, as they're known to the lupus/RA/MCTD/scleroderma/etc set, is a perfectly lovely woman whom I believe truly cares about my health and well being.  We've been fighting this disease for 14 years now.  She is my partner, my super-hero.

When I hurt, and there's truly nothing she can do, she looks at me with compassion in her eyes and says "I'm sorry." and she means it.

I am deeply indebted to and fond of this woman.  And she terrifies me.

I suppose the reason is because for a long time, every time I went to her office, some new, awful thing had arisen.  Some new secondary disease that was going to make my life miserable.  It seemed like I'd just get all the balls in the air, juggling as fast as I could, and she'd toss me another ball.  Not in a mean or malicious way, just because that's what my disease was doing.

Somehow, I now dread these visits.  I get notes in the mail from her...here, go get this test run...always an explanation.

But she is the one who has kept me alive for 14 years. 

Last night, I decided I wasn't going.  I didn't want to.  I wasn't going.  Period. 

Steve, who has learned this little ritual, said that was fine.  I didn't have to go.  So okay.  I wasn't going. 

I feel compelled to input here that I am coming off dilantin, a seizure drug, and have increased another of the three seizure drugs I take to compensate.  This weaning, I have learned, makes me right squirrelly for a bit.  Great timing. Squirrelly in time for Doctor Day.

This morning, after sleeping 11 hours due to the increase in the second seizure medicine, I felt up to the task, so I'm dressed, Steven is in the shower (my chauffeur for the day), and I'm ready to go.

Has to be done.

Have to be monitored.  Have to keep kidneys squishy.  Have to keep liver healthy.  Have to keep bones from crumbling.  Have to keep blood vessels open.  Must survive, therefore must endure Doctor Day.

I predict I will come back feeling perfectly silly for yet again going through all this rigamarole, when all is under control for the moment.

11:46 am and I am leaving.

10:16 pm, nearly 12 hours later.

In a stroke of irony, we were pulling out of the drive as the mail lady pulled up.  There, in the mail, was a letter from the very doctor I was going to see, telling me the iron issue was not resolved and to take some and it would be monitored.  I'm not sure what the big deal is about this iron thing.  Women are anemic all the time.  Unless it is a sign of something else they are watching about, I can't figure out what the issue is.  Regardless, it means yes, another pill.  And iron makes my stomach hurt.  Wah.

The trip was an adventure as traffic was bad, it was spitting snow, and Oldest Son, age 18, was talking and driving, once on the cell phone.  Only once. 

So much has happened in the last three months and this doctor had not received notification one about it.  SO I had to try to remember it all, give her the briefing, and find out what she wanted to do.  Naturally, the neurologic stuff was of greatest importance and she is sending for that info (which she should have gotten already).  BP acted up nicely.  Bottom number jumped 30 points between beginning of doctor visit and beginning of infusion.  At least she got to see what I meant about the jumping around. 

The best part of all is that God willing, I don't have to go through this for three more months.  I just don't want any more mail from them LOL.

I'm not going to say that I feel the relief I usually feel, but it's done.  One more doctor next week then no more this year. (laughing) Until January 3rd.  Wooo wooo.

BONUS POINTS

Whether it was the delivery of three large babies, lupus, age, prednisone bloat, or any number of other possibilities, like many women my age, I find I am a tad, tiny teensy bit incontinent when I sneeze, cough or laugh really hard. 

Okay, it's not a little incontinent.  It's a lot incontinent. Enough that we are considering stock in the Depends company.

So the big game at home has become "Make Mom Pee Her Pants".

I have very funny kids.  I come from a funny family.  My husband's offerings towards the issue are usually dry comments which only inflame the kids and get them started further.  SO.

If they manage to make me laugh so hard that I make a mad dash for the bathroom, they call "Bonus Points!"  If I have to change my pants, the hoots and howls reach an ear splitting decibel.

But hey, at least we have fun with it.  Right?

November 20th, 2007

Bonus points to Bill Engvall.

Twice.

11/21/07

Bonus points to....me.  I cracked myself up.

11/19/07

Over here. (waving hand)  if you're referencing the sleep apnea story where the girl took *SANDPAPER* (she told me it was sandpaper) and scraped my skin so the electrodes would hold better, this is the place.

As she's removing the aforementioned electrodes the next morning, she lifts one of "the girls", as there was one placed under it to check the heart.

She pulls off the electrode and says, "Now women with big ones like us, we tend to get sores under there, so take care of that place."

???

A sore?

Under the girl?

What should I do?  Take duct tape, affix one end under the girl and pull it up over my shoulder so that air can get to the sore place she made with the sandpaper?

Yep, better than a bra.  Just put that duct tape under there and pull up over your shoulder and you get an instant boob lift!

Snort.

 11/21/07

Oh law.  That girl was right.  She scraped a raw place to put that electrode on my ribs under one of the girls and it is hurtin.  (whine, whine)

I was goin' for the duct tape, but Daughter wouldn't let me.  She said rippin' the duct tape off would just cause a sore spot under the girl. 

~pause~ Wonder how she knows that?  Well, she *is* in graduate school...