Can You See Me, Now!?

I really lucked out in the family department. My immediate family is loving, supportive and most importantly, really funny. My brother Dave has a rapier wit, my sister Lisa has a flair for the absurd, and if you look up witty in the dictionary, you might see a picture of my mom Jeannie. Suffice it to say we are all corny, smart, sassy, clever, somewhat droll and more than a little irreverent.

Well, the apple didn’t fall far from the family tree, and my 4 nephews and 2 daughters are all pretty darn funny by their own merits. In particular, my baby Elizabeth is one of those people that can get you to snort liquid out of your nose with one single look. She is down right hilarious and her timing is excellent.

On my two Dr. visits earlier this week, I was enormously pleased to find that Liza had changed her work schedule so she could accompany me. We grabbed a coffee and headed over to USC for an ultrasound of my kidneys and bladder (a precursor to the actual Botox treatment which will be taking place in 3 weeks). We took an LA Times crossword puzzle book to pass the time and had a great time laughing over words we made up and just generally being silly as we usually are.

After a delicious lunch at an outside cafe in Pasadena, we headed over to see to my neurologist Dr. S. Now, I adore Dr. S. I keep going to him despite the fact that he is the absolute worst when it comes to waiting. This time, it took us over 2 hours past my scheduled appointment time before we got in to see him. We had our usual discussion about my hirple, how the solu-medrol worked and so on; I did my tip toe walk up and back and then we moved into the exam room. Liza of course came in with me, that’s the point of her coming along after all.

First thing she does when the door is closed is start nosing around. While I’m getting into a gown, she is picking things up and looking at them. She finds these glasses sitting on the counter and immediately puts them on. I’m cracking up, just a Dr. S. comes in. He begins to do the exam and fortunately for me I can’t see Elizabeth who is behind his back. Wearing the glasses. Taking pictures.

Once the exam is over Dr. S. retreats to his office and tells us to join him once I’m put back together. He has no idea that there is NO WAY I can put myself together after Liza shows me the pictures of her in the glasses. We manage to bumble back to his office where he prescribes me a new medication called Baclofen to aid in my walking.  I was biting the inside of my cheek trying hard not to laugh and missed the instructions on how to take the medication all together.

I gave Dr. S. the URL to this blog. Kind sir, if you are reading this, please forgive our irreverence. Liza remembered the instructions for the meds and we meant you no disrespect. You have to admit though, she looks pretty damn funny in these glasses.

News from Bedrock

I’ve been staying with Anna and Chad over the last week in California as I had appointments both with Dr. G for more bladder stuff, and Dr. S for a check up post solu-medrol infusion in November.  Yesterday morning on my last day there, I was sleeping dreamily in their very comfortable guest bed when my cell phone rang. It was an Arizona number that I didn’t recognize, so I picked it up with a sleepy “hello”.

“EL-LO? EL-LO? AIR-EEK-HA?” Oh my god. It was Dr. S from Tucson, the creepy Dr. who gave me the social security disability exam. WTF does he want? He talks like Fred Flinstone with a thick accent (Spanish or Mexican). Imagine Fred letting the cat out and getting locked out and yelling “WHEELMA! WHEELMA!” and you get the idea. Then he adds “OHHH, OHHH, UMMM” at the end of each statement. And as is hopefully conveyed by the ALL CAPS, he talks really loudly. Yet, he doesn’t listen at all.

He goes on to yell at me that I had promised to send him previous MRI reports and accuse me of not sending them. I informed him that, indeed, I had had them faxed over the very next day. “I DIDN’T GET THEM. THEY ARE NOT HERE ANYWHERE.” I reiterate that they were sent over that very next day.”OHHHH, OHHHH, WELL I LOOK FOR THEM. NO THEY ARE NOT HERE.”

Now, in addition to waking up in this alarming manner, I am also disturbed by the news that he has not sent in the report to the SS administration. I spoke with someone there last week who informed me that they had all the necessary information and would be making a decision by February 15. Based on what I wonder?

I inform Dr S. that I will have them faxed over again. “YOU DON’T HAVE THEM? OHHHH, UMMM. YOUR DOCTOR IN CAL-E-FORN-E-A HAS THEM? UMMM. OHHHH. YOU DON’T HAVE THEM?”

I’m rolling my eyes until they’re about to fall out of my head and gritting my teeth so hard they’re about to pop out too. This guy is bad for my face.

My beloved neurologist Dr. S. in Pasadena has the reports, so again I call his office and ask to have them resent, which is handled quickly, professionally, and quietly. I confirm Dr. S. in Tucson has received them. So now I wait.

Yabba dabba do!

Newly Diagnosed

I’ve been here in California for the last week and will be coming back regularly for the next few months, so if my posts are sporadic that’s why. I’m back doing Dr appointments with both Dr G. and Dr S. and will report on those visits soon.

Elizabeth took the day off from driving the ambulance to spend the day with me (bless her heart ~ it makes these Dr. days so much more fun) and during the course of the day she told me her friend’s girlfriend was just diagnosed with MS last week. She is in her mid 20s. Her friend (let’s call him Cody as I can’t remember his name) told Liza he was so scared, and she said to him “you’ve been reading everything you can find, huh”. He confirmed they’ve both been Googling like mad.

It’s a fine line. Newly diagnosed, you want to find out everything you can and education is critical in dealing with your new condition. I did the same thing and read books like the catheterizing MonSter ladies book and it terrified me more than I already was.

I’m glad I don’t travel much anymore because the hype about bed bugs alone is enough to keep me from ever sleeping anywhere ever again. I’ve already burned my suitcase, all my coats and my bed because as the news reports, they are everywhere! I’ve started brushing my teeth 4 times per day for 2 minutes each time as apparently bad gums will give me a heart attack. I need to consider going braless as my bra is restricting my lymph nodes and raising my risk of breast cancer.

You get the idea. For the newly diagnosed I don’t even recommend reading this blog. The whole bladder Botox thing, the scooter, the steroid infusions…it is all scary shit! When it comes in a natural progression you’ll discover how resilient and strong you really are.

My advice: take a deep breath, read at a gentle pace (unfortunately, you’re in it for the long haul…plenty of time to research), process slowly, go have a long sleep, and don’t let the bedbugs bite.

Egad – Health Care…..

I am not very politically inclined and this is certainly not a political blog. However, being unemployed and conceivably uninsured within months, I feel my poor chewed fingernails are due some explanation as to why they are getting so much attention lately.

Looks like Arizona is disinclined to give me any unemployment benefits due to my disability classification (except I have not been officially classified yet).  The Feds are pondering my medical reports and will advise me of my SSD status by Feb. 13. I’m in Limboville right now, and will keep you posted.

My dear friend Nicole, who lives in Nashville, has been diagnosed with MS for 5 years. You would be hard pressed to find a more positive, sunny and hardworking person than her. She has been betrayed by the system over and over, and still doesn’t complain. She just wants to see things righted, and she wants some help.

The health care bill no doubt has lots wrong with it, and many ramifications to small business owners, taxpayers and others. I don’t purport to have any understanding of it at all, really. Two things stand out though, that are like beacons of hope to those of us who have a chronic illness, are self employed or unemployed, and single. The bill offers us 1) guaranteed insurance of some sort and 2) exemption from pre-existing conditions bias. Remember that Elizabeth is a Type 1 diabetic, so this super important to her as well.

When my COBRA runs out, and if I’m not yet approved for federal disability health care, my fingernails are going to be giving tips to my knuckles on how to survive. I don’t even like typing this and putting it out there, but it is a reality. I hope for my sake, Nicole’s sake, Elizabeth’s sake and all our sakes that this issue gets sorted out one way or another so that this great country of ours can live up to it’s tenets of brotherhood and love. We don’t want a hand out, we just want a hand to help us.

Tennesseans voice concern about possible health reform repeal

Cruising…

I like to be active as much as possible every day. I  give myself one of two options when I get up each morning ~ work out or do house cleaning. I don’t have the energy to do both. The Sonoran desert here in Southern Arizona is extremely helpful in making sure that my house is covered in endless drifts of dust, insuring that my house is never clean and vacuuming is always a viable option.

For the working out option, there is a small gym that my HOA dues cover membership in and it works fine for me in between days I do Pilates. There are 2 treadmills, a stationary bike, an elliptical trainer and some free weights, yoga balls, etc. Very basic, but it works.

I can do the treadmill if I clutch the handrails and don’t go too fast. I can certainly do free weights on the bench. The elliptical is kind of rickety ~ it makes a lot racket and wobbles a lot. I also got stuck on it once which was kind of humiliating…

I like the elliptical machine because once I get going on it, I feel sort of  weightless and imagine this must be what it feels like to fly. One day I was having a wonderful time soaring through the images of my mind and kind of overdid it in my zealousness. When I finally stopped, the old stems had had more than enough and refused to move. Uh Oh. I’m standing on this wobbly gizmo with frozen legs that I can feel are about to collapse from under me and thinking now what? Fortunately, the majority of rental units here where I live are inhabited by young, studly (generally armed) Border Patrol agents who work out all the time. I flashed a sheepish grin, shrugged my shoulders in the most kittenish fashion I could muster, and held out my hand to one of these hunks of youthful manhood who helped me off. BP agents are very polite as a rule and you’d think by this kid’s demeanor that in addition to tracking drug mules and illegals through the desert all night long, helping gimpy middle aged broads off elliptical trainers is all in a day’s work.

I have since switched to a stationary bike that I can sit on long after I’ve overdone it to cool down. Given 5 or 10 minutes of rest I can usually hirple out to the car and go home to relish the dust drifts that have accumulated while I was at the gym.

Last fall, Lisa and I were up in Northern California visiting the family in Lakeport when we happened across a bright blue shiny adult tricycle at K-Mart. My eyes shone, the trike glittered. My mind began to race…could I…? I got right up on it and fell in love. Once back in Arizona, I Googled and searched and researched and fell more in love. I even found someone here in the Barrio who owned one and let me take it for a spin. Amazing!

One of the major drawbacks of having MS, for me, is that I mentally still think I can just go and go and go. Then I realize I am stuck on the proverbial piece of gym equipment, and can’t get down. I can’t realistically hire my own BP agent to follow me around and gallantly save me from awkward situations and perches. A little voice was telling me that a trike was great, but what would happen when I got too far from home and the gams gave out?

Enter the electric trike. I became like the lady in the Napolean Dynamite movie who sees the ship in the bottle and says in a trancelike voice, “I want that”.

I can see myself, you guys. Maybe in a sun hat, toodling through town (one must toodle on a trike, don’t you think?), giving a howdy neighbor wave as I pedal past friends, filling my basket up with wine! and flowers! and bread! and cheese! and kitty litter (I was getting ahead of myself…let’s be real here) and then getting all hot and stuck and powering up and gliding home.

I close my eyes and envision myself on my new trike daily, and have started a dedicated savings jar for it. My goal is to have one of these babies under my tree next Christmas.

Bladder Blog #3 ~ We’re Live from LA!

In my last post I mentioned not having any dignity, that’s BS. I have lots of  dignity, but zero modesty left, as you will soon find out. One more time: graphic content warning!

Well now it’s weeks later and I am one happy continent girl (is that the opposite of incontinent?). The hideousness of the injections are a thing of the past ~ like childbirth, the end result is so amazing you forget the discomfort. I go in for a follow up visit and…oh, no, really? In a nutshell it goes like this: put on a gown, wire up again like before (only this time all the tubes are connected to a computer), drink a bunch of liquid, sit on a chair with a hole in it and a bucket underneath, and wait to pee. Makes sense, this is an experimental clinical trial after all.

Oh yes. Lest I forget…. in the room with me in this rather indelicate position are: Dr. G, his nurse, the clinical trial coordinator, the clinical trial nurse, two visiting doctors and Anna. Seven people. All chatting like they are at a cocktail party about which movies they’d seen lately, who won the game on Sunday, future vacation plans. Meanwhile I’m on this jerry-rigged porta-potty in a hospital gown relishing the absurdity of it all and waiting to take a piss.

Eventually I pee, the computer monitors it, everyone puts down their martini glasses, I get $250 for my troubles, and Anna and I skedaddle as fast as possible on out of there.

Fast forward a few months. I get a call from Dr. G which is unusual in and of itself, but his reason for calling is even more unexpected. It seems KTLA or one of the local stations has gotten wind of the fact that he is heading up this new use for Botox and wants to interview him on a health segment. “Well, that’s dandy!” I say, innocently. He then goes on to explain that the station wants to talk to a patient in the trial, and he figures I’m the only one in the group with both the elan and the cojones to do it.

Now I’ve never been too shy, but this is pushing it, even for me. I take some time to think it over and realize that a) the whole point of a clinical trial is to hopefully help people who are suffering b) I have already sat through a gathering where the main event was me peeing in a bucket and c) the whole thing is so preposterous, why the hell not. I can only hope none of my clients watch afternoon TV, because I do question the professionalism of my decision.

The day I’m scheduled to do the interview, Paris Hilton comes to my rescue. She manages to get herself arrested and all the news crews flock to the scene of this hot breaking story. I have to agree, even Paris is more interesting than my bladder, and certainly a better news draw. Saved!

Not so fast. They are adamant to cover this story. A week or so later, a cameraman and a reporter come to my home office and interview me there.  They take pictures of the cover of the magazine I work for (gulp), state my name (double gulp) and put the camera in my face (gasp!). So here I am now talking about my lack of bladder control on a TV camera. Does this not explain why it’s not so hard for me to approach this topic anymore?

As it turns out, the only person I know of who saw it was some friend of Anna’s (“Hey, I think I saw your mom on TV the other day!”). Lucky for me.

And so ends this initial episode of the Bladder Blog. Unfortunately, it is an ongoing saga and I may post more on it as I am inclined. My intention was not to make anyone uncomfortable, but rather to share my experiences outright for those of you reading this who suffer the same issues and indignities as I have. The whole topic is tricky but know that you are not alone!

Bladder Blog #2 ~ Pins and Needles

So we left me in San Diego with my sister playing with catheters. I know you’re dying to know what is next, and as promised, here we go. Again: be forewarned. This is an awkward topic and I’m telling it like it happened and it gets a little gnarly.

So Dr. G comes in on my next visit (I’m going to say this is in early  2006 or so) and virtually sings out, “We’ve got options!”. Imagine my anticipation and delight if you can. He goes on to explain a new clinical trial he is heading whereby people who suffer from incontinence due to neurological issues or spinal injuries can partake of injections of Botox into their bladder.

Hmmmm. Let’s think on this a minute. Go ahead and let your imagination run free….no matter how you spin it you’re going to come up with pretty much exactly what is going happen. Well by now, I’m a total pro at the catheter thing, so how bad can this be? The end result means I might be able to wear a thong again, so it will be so worth it. Right?

Let’s do it. I sign on and have an ultrasound done, sign some paperwork and fill out a lengthy questionnaire. Due to incontinence am I depressed? Embarrassed? Hindered in daily activity? Concerned about catheterizing all the time? Well geez, I wasn’t until they brought it up!

I schedule the appointment for the procedure and take Anna with me (the girls take turns with who goes with me). They insert lots of various tubes in various openings and then douse some of those openings with Lidocaine to numb them. Then Dr. G comes in and inserts a camera (by which he informs me I can watch the progress of the events as they are happening on a monitor nearby. Um, no thanks.) Without being too much more graphic (although I DID warn you) I am injected multiple times in my bladder with the Botox.

According to Dr. G, 99% of the patients in the trial feel minimum discomfort. Need I tell you what percentage I fell into? I actually went into a little bit of shock. Shivering, crying, wobbly, that kind of thing. It didn’t last long though and there was no lingering discomfort, so off we went.

What follows is urinary bliss. People who don’t suffer from anything related to going #1 take it so for granted, as did I for years. Why would you not? We’ve all be peeing since birth (although in a diaper I might add…I’m just sayin’) and it’s a natural no-brainer. All of a sudden within days I was back like a semi-normal person, no longer like one of those people in the TV commercials whose whole life revolves around running from bathroom to bathroom.

Per the clinical trial expectations, the Botox is supposed to help for 6-9 months. Fortunately for me, I also feel into the 1% and mine lasted for 16 months. Damn good thing too, because I dread going back (I’m headed to California next month for my 4th treatment). I will be taking a thong to wear home though.

That’s the end of installment #2 of the Bladder Blog. Next is when I take it on local TV (come on, you didn’t really think I had one shred of dignity left, did you?). Stay tuned (pun intended).

Bladder Blog #1 ~ Not for the Faint of Heart

I Googled this phrase…I thought it was feint of heart, but turns out it is faint of heart. At any rate…..

Warning: If you aren’t used to doctors poking around in your orifices or are in the least bit squeamish about these things, then skip this post. This one is written most specifically for my MS brethren who have suffered the indignities of medical procedures and have given up all hope of retaining any sense of modesty since we started having our brains x-rayed. If the idea of having an airport security body scan bothers you, move along.

Incontinence. How embarrassing can it get? People telling jokes about Depends that we only give a curt smile to and then move on (I actually know a funny one, but maybe another time). It is high on the list of  MS symptoms and almost everyone I’ve ever met with MS shares this inconvenience with me. (If you’re daring enough to be reading this after my warning, I have news. Chances are running pretty high that even you will be personally interested in this topic someday).

I’ve been seeing my urologist, Dr. David G., for about 8 years. He’s a handsome blade, very suave (I’ve never been able to figure out how you can combine suave and urology, but he has), and cutting edge in his affiliation with USC. Over the years we tried Detrol to control the urgency, which worked up to a point, but I was still wearing a pad. Then one visit after an ultrasound he pronounced that I was not voiding completely ~ oh for god’s sake, really? What does that even mean? Well in his Dr. words, my bladder was a cess pool. EWWWW!!!!! Solution! Please! Now!

Fuck. The solution? Catheterizing. When I was very first diagnosed I bought a book on MS that was written by all these very “evolved” women who called it the MonSter (oh, so clever) and I hated them and the book because they gave their condition so much power. Nevertheless, they talked about having to self catheter and I thought NO WAY that is the worst EVER! Hell will freeze before I ever do that!

Hell froze over.

I was not only peeing in my pants every 5 seconds, but it was because I was only ever “topping off”. The only solution to empty the old B was to catheter. Holy crap. I went in and had a lesson (I am not making this up ~ can you imagine that being your job?) and glumly went home with my new “gear” and cried and cried and practiced and cried.

I remember going to San Diego not long after to meet up with Lisa and her family who were down from Seattle on holiday. She, being my number one go to rock, suggested I show her how it was done. My wonderful sister sat with me in a hotel room while I demonstrated my new found skill and held me while I cried, laughed with me at the absurdity of it all, and as per usual, was a beacon of strength and inspiration to me. My sister, as they say, is the bomb.

Believe it or not, this is just the beginning of the bladder story. There are more installments of the bladder blog, but it’s getting late. Why don’t you all go have a pee and we’ll reconvene tomorrow.

Moo!

Not sure if it’s post holiday blahs or what, but feeling a general sense of malaise and ennui the last few days. Perhaps I’m still just gnashing my teeth over the feeling of violation by Dr. S. Per his request, I had the reports of my last first and last MRIs (2002 and 2008) sent over to him, so we’ll wait and see what my verdict is.

I’ve been spending my time doing some writing for a couple of web sites and making felt creations to sell at my friend’s studio. Anna made a bunch of money over the holidays, so I’m stealing her ideas and creating  headbands with little felt flower designs on them. I made $40 in one day, so I think we’re on to something here.

One lady bought a headband with a cat design on it and then requested one with a horse head on it. Oh, shit. A horse head? Really? I sent that request over to Anna and she came up with the most fabulous design. I showed that to another woman, who then said, “Oh I love it! Can she make me a cow? I’ll take 10 of them.”

So California can throw me under the bus, Arizona can kick me to the curb why they decide what to do with me, SSD can wind me up and send me in circles ~ but damn it ~ I’ll show them all up and survive by living on felt cow headbands.

Criminal Mind

I drove to an urgent care center on the south side of Tucson today to meet with Dr. S for my physical eligibility interview for SS disability. Kind of weird, but whatever.

He was an older man of Hispanic descent. Sort of a bad toupee type wearing brogans and a striped shirt. We share some discourse on how long I’ve had MS, how it affects me, symptoms, side effects, medications, etc.

He proceeds to ask me why I moved to Tubac. I don’t know, needed a change, ready to get out of LA, blah, blah. What did I do exactly? Why did I move to Tubac, again?

I begin to feel a little bit uncomfortable. What f’ing difference does it make why I moved to Tubac? He gets this sort of Dr. God attitude and continues to question me like I’m there on a murder rap or something, yet at the same time like he’s a serial peeping Tom, undressing me with his eyes.

It totally creeped me out. Where does Lopez come from? Why’d you get divorced? You never remarried? How old are your children? Do they live with you? Do they have boyfriends? Are you a grandmother yet? It makes no sense you left LA. Why’d you move to Tubac again?

Maybe as a State employed examiner, he is suspect of people applying for disability. I felt like he should work for the TSA ~ you know those guys that stare you straight in the eye while they open your suitcase and fondle your underwear for contraband. C-R-E-E-P-Y.

I am not a criminal for pete’s sake. I am a solid tax payer with a few bad genes and I need and deserve some help, that I have paid for!

I came home and took a shower. It infuriates me that this bitter man (who obviously wishes he lived in Tubac!?) holds the keys to my financial future and lords it over me with a smirk and inappropriate prodding questions….argh! I am mad as a wet hen. I do not think I should feel totally violated from a physical examination (which thankfully I did not have to undress for!) regarding the level of my disability.

Along with the summons for the exam was a service evaluation. Bring it on!