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!

Smarter Than a 5th Grader

As I’ve said before, I’m applying for SS disability. Everyone from my friends to my own Dr. have told me it won’t go through the first time, and that I’ll need to get a lawyer and appeal. Ah, America. Sigh. Believe me, if this thing could get cured, I’d be the first person in line to shred the application.

Anyway, about 2 weeks ago I went in for my mental exam. Similar to my sense of playing pretend during the physical exam, this consisted of playing with blocks, counting backwards and naming the current president.

The oddest thing was, when Dr. M opened her mouth and said hello, I started to cry. I am not a crier. I can see baby seals being clubbed on TV and be outraged. I can have my heart broken and drink whiskey. I can read about tsunami victims and send money. In my day to day life, I buck up. I am a bucker-upper.

So what the hell was this all about? I hadn’t even told her the name of the president yet, and here I was crying. Not a drop or two, but a full on Kleenex/not able to talk/hiccuping kind of a cry. The Dr. handed me the box of tissues and asked if this was normal behavior. I should say not!

When I was able to talk it all came pouring out. Being at a disability exam is down right humiliating. I don’t want to be disabled. I repeat. I don’t want to be disabled. Like renting the scooter, this was another landmark event bringing it all home. This time, in addition to being plain mad, I allowed myself to be sad for a change. I dipped my toe into the pity party pool for a few minutes and, truth be told, it felt good.

It didn’t last. I can’t feel too sorry for myself. When I think of all the poor baby seals and broken hearts and tsunami victims I recognize that I don’t have it so bad. I found out after spelling my name backwards and defining “foreboding” that I am still smarter than a 5th grader, and THAT is something to hang on to.

Today I am headed off for the physical side of the SSD exam. Doubtful if this time I’ll tear up, more than likely I’ll just hirple the hallway under the Dr.’s watchful eye and hopefully get a bad enough score on my gait to exempt me from future lawyers and appeals. Stay tuned.

State of Mind

The State of California has totally thrown me under the bus. I calculate that I have paid in the neighborhood of over $50,000 in income taxes over the past 10 years and have lived and worked there for most of my life. I’m 53, have been working for 35 of those years in California, and even not being very good with math, can figure out I’ve given the State a lot of money.

So when my 26 weeks of unemployment ran out, what did they do? They denied my extension and threw me over to Arizona where I now reside. Bless little Arizona, they are at best a poor cousin to their next door neighbor. I’m not surprised at the disparity…..honestly, Arizona charged me about 1/3 the amount for a drivers license as California and it’s good for like 20 years or something. No wonder they’re broke!

There are no physical UE offices here, so it all must be done by internet.  Ok, no problem. The online application asks some questions such as “have you worked out of state in the last 18 months”. I answer yes and am prompted to call in. I slogged through the phone system and finally got to an unemployment agent, and he was as nice as could be. Friendly with all the time in the world. After we discussed the SF Giants winning the 2010 World Series and his inherent dislike of the LA Dodgers because his parents were originally from SF and that’s such an age old rivalry even though he now lives in Arizona and is a Diamondbacks fan, he explained that I must file online.  I explained that the online prompts to me to call this number.  He explained back to me that I can’t file a claim without a PIN that can only be established online. Wow.

He gave me some super secret information which I will not divulge publicly here (I told him I had rooted for the Giants too, that must have done it), and I was in the system. So then I crawled back into the mire of the telephone system and waited and waited (and waited…and waited) until the next super nice agent came on. She and I had a nice long conversation about her niece who has MS and how her disability application was coming along, and how her aunt (the niece’s mom) got disability for just knee surgery and diabetes, not even anything like MS, yet the niece had been denied twice already.

I felt I was making good progress and it had only taken me about 3 hours so far. This nice lady filled out my application for me and told me it would take a few days for them to decide if I was approved or not, and I would find out by mail. Then a one week waiting period, and if things went well I could expect to start receiving a weekly check.

As you can no doubt ascertain from the amount of taxes I paid California, I was making some pretty good money back in the day. California pays out a pretty healthy weekly benefit…Arizona, not so much.

So now I have a new challenge. There are billions and billions of dollars in the global economy, and I need some of them. It’s time again to recreate myself and my wealth. Rule number one, be open to suggestions. I have some of my own nuggets, but anyone else have any ideas?

New Year Resolutions

I love the whole idea of New Year resolutions. Having a clean line of delineation between “before” and “after” is always so, well, defining.

“An Oreo? Oh heavens no, I don’t eat cookies anymore”. “Watch TV on a Saturday afternoon? Oh no, I only work out now on Saturdays, no more afternoon TV for me”. “Go to the mall? No thanks, I’m off to go call my mother, I do that religiously every weekend”. Ad infinitum. Since this last Saturday morning, Jan 1, 2011.

We all have the best of intentions in giving up our little personal illicit activities (ok, chocolate might not be that illicit…) but like many things, as we all know, we skip one day, which turns into 2, which turns into a month….

I’ve often wondered why it’s so hard to give up Chunky Monkey ice cream…why can’t broccoli or brussels sprouts be so alluring? “Damn, what a day ~ let’s put it behind us with some cauliflower!”

But on a more serious note….I can’t tell you what I would give to be able to fulfill a New Year resolution to go running every day. To walk a mile every morning. To learn to salsa dance. To go to work everyday brimming with energy (of course fortified with fresh fruit and an egg white omelet…no donuts here, that’s on my resolution list!).

But I can wake up every morning and breathe clean air, look around me, feel the sunshine on my skin, hear the birds yammering and be grateful for all those things. I can still read, write, eat, laugh and hirple.

I would like to challenge each of you reading this to stop for a second and be grateful for what you can do. If you can dance, walk, run, ski, hike, skip ~ go do it. Today. Now. Skip to work. Hop on one foot to the busstop. Dance your way through the day.

One day, you won’t be able to do those things anymore. Guaranteed. Don’t be someone who looks back on life and thinks “Crap. I wish I’d gone dancing and eaten more green beans.”  Be one of those people who looked at the line and crossed it with a belly full of vegetables, and an ice cream cone in hand, doing the limbo and then sliding into home plate.