I Am Not Dead (YET)

Colossally lazy, yes. Dead, no. Not yet, anyway. Although I HAVE been feeling a pain in my left calf that *might* be a blood clot that will eventually travel to my brain and explode. For now, though, I live and breathe. Here's why I've been neglecting the blog and not visiting any of yours:

1. Colossally lazy (covered this already)
2. Days may be numbered (see: blood clot, above)
3. Two fellow editors at my workplace selfishly decided to have babies, leaving me with all of the work. So, SO thoughtless of them
4. MS/cancer/blood clot (or all three)-related fatigue

Those of you with MS who are on a disease-modifying drug (DMD) like Copaxone (which is what I'm on) may be familiar with the following phenomenon: you switch insurance annnnnnnnnnd, suddenly, getting your DMD becomes more difficult than that time a monkey was sent into space (or was it a dog?). I mean, really. My insurance has changed recently for lots of boring reasons, but as has happened Every.Single.Time there's a change of insurance, the new company is taking for-f*cking-ever to get me my meds. I've been completely out of Copaxone for almost two weeks now.

Wee Squeaky says I'm getting punished for adopting that damn third cat.

I've called my neurologist's office. I've called the insurance company. I've called Shared Solutions, which is a resource for people on Copaxone. The Shared Solutions people have helped on several occasions as as I've waded through the dozens of calls required to get my meds after a change of insurance. But the combined power of Shared Solutions and me is not enough. The insurance company drags its heels and insists on authorizations and --oops!-- preauthorizations and calls to specialty pharmacies, which need prescriptions, but wait, they're still waiting on the authorization (or was it the preauthorization?), and they haven't heard from the neurologist, so please call to have him fax the prescription to this number -- no, not THAT number, which we gave you two days ago, but THIS one -- and call us back but of course, sure, we'll call you when we've gotten it; oh, who did you talk to last time? Sorry, I don't see any notes in your file, let me put you on hold for 45 minutes....

It's truly one of the more frustrating, infuriating, and exhausting processes I've been through. And it happens without fail. Why, WHY is it so hard to get the meds we are told we need? I know some people eschew DMDs altogether, but I'm not willing to go that route yet, even though I kind of am by default now. One of the nurses at Shared Solutions said my MS symptoms could flare up during this no-drug period, but so far I haven't had a relapse. I've been feeling the fatigue more than usual. Is it coincidence? Is it because I'm temporarily off the meds? Is it that freaking blood clot? I don't know. Do insurance companies make this so hard because it really IS as challenging as putting a monkey (or dog) into space? Or is it because these drugs are so expensive? In a moment of desperation, I asked someone last week about getting a small supply of injections to tide me over. To get 30 injections -- the smallest dose they could parcel out -- I'd have to pony up $5,000 out of pocket. Ummmm, yeah, hang on while I write that check.

So, I wait. And call. And get put on hold. And get told there is another hoop to jump through. And all I can do, as far as I can see, is call back and then call again and wait and wait some more and hope someone will hurry the hell up.

Cheer, Goodwill, and Embarrassments: Ms. CrankyPants' Holiday Letter!

Happy holidays, everyone! It's been quite a year! There have been some highlights, and many, MANY embarrassing lowlights, most of which I've shared with you. If you need a refresher, just click here or here. Oh, hell, click on any post in my blog; it's nearly all embarrassing.

Everyone knows that the very BEST holiday letters are all about bragging highlights, so let's get started!

• I'll just get the biggie out of the way first: I now have 10 followers! It's taken close to a year, but 10 new people actually like me! Or at least, the Ms. CrankyPants version of me. For all you know, I could be a colossal ASS whom you'd hate in real life. (After all, I just used the word "whom.")

Thanks, 10 followers!

• I haven't had an MS relapse in...ages. Is it the Copaxone? The Swank Diet? Is it because I don't really have MS at all but some other horrible disease? Or, could it be that strange "agreement" I made with the mysterious silver-tongued chap with the red tail and horns who showed up that one night with a contract? Dunno. Whatever. I've been feeling good. (Note: I've just officially jinxed myself.)

He LOOKED friendly enough...

• Our fantastically wonderful family is growing! The cat-adoption stork brought us a little bundle of joy (LBOJ) named Pepper Anne! 

Pepper Anne, in one of her 4,872,810 adorable poses.

• Our existing cats hate aren't especially fond of are slowly getting used to our LBOJ!

Capt. Nap: "I can't even look at her. She's HIDEOUS!"

• In other exciting feline news, Squeaky the Cat just graduated Magna Cat Laude from Big Jerk Cat University and has received her Ph.D. in Cat-Assery. She is so skilled! She can now hiss/growl at Pepper Anne and Capt. Nap WHILE guarding her toys, food, and the communal water bowl. Oh, and also all four litter boxes. She's so talented! We are so, so proud. That tuition money was well spent indeed. 

"Who the hell are you calling a jerk? Cover my head at once, minion!"

• Capt. Nap is also doing really well! He hasn't had an explosive vomiting session since September. Plus, remember his adorable POO PAWS that so delighted me back in January? He's taught l'il sis Pepper Anne how to actually walk in her poo before burying it. What a good big brother! Now we have two cats with the occasional poo paw. We couldn't be happier! (By the way, who wants to come over and lie on our carpet? First come, first served, friends. There's only so much carpet to go around!)

I call this section of carpet. (Sorry, homeowners get first pick.)

• Husband is continuing to support me in my efforts to stave off disability via the Swank Diet! He's a wonderful cook! But, really, how can you go wrong with products like TOFURKEY sausage?

OOPS! Wrong picture.

You can see why I got confused.

• I may have big boobs! Yes, friends, according to a highly trained expert at a local bra shop, I have spent most of my adult life wearing a way-too-tiny bra size. This was some of the best news in all of 2013 for the fabulous CrankyPants family!  

• Back to our kitty cats! They have really impressed us this year by scorning every single product we've introduced in an attempt to toilet train them. Stubborn little kitties! I do love a cat with his or her own personality! Oh, and not to worry: they've promised to pay us back the $3,176 we spent on ridiculous devices designed to make scooping their litter boxes a task of the past. 

"Kwit the litter? NEVER!"

• It sure was a great Halloween this year! We managed to significantly reduce the number of trick-or-treaters harassing us! No, it wasn't the unwrapped hard candies or the miniature boxes of ancient raisins we'd been passing out. We suspect it was because our neighbors saw my husband mowing the yard in the snow! "Why, those cat-loving, kid-less people are NUTS!" we think they might have said on the neighborhood shared social media platform that we imagine exists and to which we've not been invited. "I wouldn't send MY kids there this Halloween." Mission accomplished! 

This isn't my husband. I've been forbidden to use that picture. This is the mayor of someplace in Iowa. But you get the idea. And in his defense, my husband was not wearing shorts. 

• Thanksgiving 2013 was a tremendous success! No four-legged attendees vomited or did a poo anywhere! Pepper Anne jumped on the dining room table and lurched toward the turkey only once! (Maybe twice.) (Okay, fine, thrice.) (And, yes, I just said "thrice.")

We look forward to the new year, new embarrassments, and, ideally, new carpet. May you and yours have a very happy holiday season! 

Shot Night!

I know what you're thinking: What's that wild and crazy Ms. CrankyPants up to? More carousing? Partying 'til the wee hours? Getting drunk and performing (horribly) "You're The One That I Want" from Grease at a karaoke bar?

No, no, and no. All of those things happened in a different life, before I was Ms. CrankyPants and when I was Ms. PartyGirl. (The same young lady who earned a staggering .25 GPA her third semester at college.)

No, ladies and gents, the shots I'm referring to now aren't vodka-soaked jello or tequila, they're actual shots. As in, injections. Quite a different type of shot. Instead of hurting the next morning, you hurt right away! Instead of making you think you are sexy and can sing well, they make you feel like a cranky pincushion! 

Yeah, THIS kind of shot. Not nearly as fun as the jello kind. That book with the diagrams and scribbles is how I keep track of where I've injected myself. 

When I was first diagnosed, my neurologist prescribed Rebif. A nurse was assigned to come by my house and show me how to give myself the three-times-a-week subcutaneous injections. Ms. Nurse sat at my dining room table patiently while I worked up the courage to give myself a test injection using an auto-injector thingy that you slip the needle into and push a button, which then pops the needle into your skin. Incredibly (it seemed to me), she said injecting myself in the stomach would be the least painful. (Could she detect my muffin top through my clothes? Obviously.) Lo and behold, she was right! The cushiony folds of my stomach proved a fairly painless place to inject myself. Thank God I never got in shape! Now I had an ironclad excuse for not developing abs of steel.

As it turned out, I also would now have an excuse for remaining flabby all over. I was to inject myself in my arms, thighs, hips/butt, and, as mentioned, stomach. All problem areas covered! (My knees and elbows are in tip-top shape, as naturally I've been working out rigorously where I can...)

I remained on Rebif for more than three years until an MRI revealed new lesions and a blood test showed I was developing antibodies to Rebif. So, my neuro switched me to Copaxone. Now, instead of three times a week, SHOT NIGHT!! would be every night. Ugh. A different Helpful Nurse came over to my house and sat at my dining room table to show me how to inject myself. By now I was an old hat at this. I sat there patiently while she showed me the new auto-injector thingy, which was identical to the old injector thingy, and explained the areas where I was to give the injections (same). She did give me some exciting new items, such as an attractive carrying case for my supplies.

As you can see, it's casual enough for everyday use, yet elegant (note French writing), so it won't look out of place paired with a gown. Importantly, Wee Squeaky can fit inside. 

For those who haven't seen one, here's the auto-injector thingy.

The needle is nicely hidden inside so you don't have to SEE it jabbing into your skin, although I know some people prefer doing it themselves [shudder].

I've been on Copaxone for several years now, with no serious side effects. There is the dreaded Immediate Post-Injection Reaction, which I've heard Actual People say feels like a heart attack coupled with an inability to breathe and Copaxone Representatives say feels like slight shortness of breath and maybe a little chest pain. I reckon the truth is somewhere in the middle but knock on wood, I haven't had that experience yet.

The worst of it usually is some temporary pain/burning at the site and bruising. So much for toting the elegant blue bag, pictured above, with a short gown. Also, and probably for the best at my advanced age, shorts and miniskirts are OUT. My thighs routinely look as though I've been in an unfortunate horse-trampling incident.

Sorry for the suggestive picture; I show this not to titillate but to educate. 

The bruise above happened after a routine thigh injection. I don't even think it hurt very much. I was horrified (as I'm sure you are) to see THIS beauty blooming on my thigh the next morning. It lasted for many days, providing me ample time to point to it piteously and ask my husband to bring me a snack. But I think you can see why my days of wearing anything above the knee are long gone.

The Beginning

I guess I should start my story where all good stories start: at the beginning. Huh. Okay, not at the beginning, as in, "I was born in..." because that would be incredibly boring. But the beginning as in: it started with a little numbness and tingling in my fingers.

Now, as a hypochondriac, I'd already have stopped reading my own blog, because the instant I hear about a symptom of any kind, I am convinced I have the hideous accompanying ailment. For those of you brave enough to soldier on, here's what happened next:

I ignored these symptoms for several months, as any scared-of-a-death-sentence-diagnosis hypochondriac worth his or her salt will do. My coworker Charlie helped me adjust the level at which I held my hands when I typed. See, I had decided by then that it was most likely carpal tunnel syndrome. Yep, that can cause numb hands, and my imagination failed in its usual task of conjuring up fatal diseases. When the adjusting trick didn't work, I figured it was time to see a doctor. "What's the worst that can happen?" I thought. Did you ever see a movie when the main character says something ridiculous like, "Well, it can't POSSIBLY get any worse!" or "Phew, glad that's over!" and you shout at the screen, because you know it will get worse and it's most certainly not over. So, yeah, that was me. Had I for a second suspected I had a serious illness, I would not have been so cavalier about making that appointment.

The Appointment

"I think I have carpal tunnel," I announced to my primary care physician. "And I've been under a lot of stress."

The doctor asked me about my symptoms. There had been a new, odd thing I'd noticed: an electric-like jolt down my neck when I bent my head. And there had been an incident at my 35th birthday party.

My niece had given me a pair of earrings. When I went to take the ones out that I was wearing, to swap them for my pretty new ones, I couldn't feel my fingers. I thought I was holding an earring, but in between my thumb and pointer finger was nothing. I laughed it off at the time, and tried to again at the doctor's office, bleating more insistently about the stress and my theory of carpal tunnel. He appeared unconvinced and then did a scary thing. He said I should see a neurologist.

The Second Appointment

The neurologist turned out to be my dream doctor -- kind, patient, warm, and reassuring in the face of my ever-increasing unease. She did an exam, the details of which escape me now, and then ordered some more comprehensive tests. There was bloodwork, an MRI, and, horrifyingly, a spinal tap.

"Do not go home and get on the internet," she cautioned me, saying there was a wealth of misinformation that would only frighten me. (Apparently, my wobbling voice and panicky attempts at being funny clued her in to my state of mind.) There was no chance I was going to do something so foolish. I've looked up the most innocuous medical-related items ("how to remove a splinter?") and found 2,345,987 links to "cancer." I wasn't ABOUT to start Googling my symptoms. Better to bury my head in the sand and pray for the old stress/carpal tunnel diagnosis.

The Followup

Alas, that was not to be how my story went. I was at another family party (we're really not big party animals; not sure why this tale involves so many festivities) when I got a call on my cell phone. It was my neurologist. She wanted to see me in advance of my follow-up appointment, which was scheduled for about a week later.

"Bummer," I thought. Okay, not really. "Sh!t! F*ck!"is probably more likely. I've seen my share of movies and TV shows to know a "We need to see you early to discuss your test results" call is never a good thing.

The next day I was with my husband, drowsing in the waiting room. No, really, I was! But only because my neurologist had prescribed Valium for me to take before my spinal tap, and I decided this appointment merited another dose. When it was our turn, she didn't waste any time.

"It's multiple sclerosis," she said, very gently.

I cried a little bit, and then we talked about my options. She wanted me to begin taking disease-modifying drugs right away and recommended Rebif, a three-times-per-week injection. Overwhelmed, but confident in her advice, I agreed. She said a nurse would come to my house to show me how to give myself the shots.

My Very First Relapse!

Apart from the benefit of being in the care of medical experts, as well as the probable benefit to being on medication, it's a damn good thing I was diagnosed when I was. It couldn't have been more than two weeks after my diagnosis when I had a major relapse. In the MS world, that means something fairly scary happens. In my case, I was at work and began noticing a weird feeling in my right foot. I was supposed to go to a karate lesson with my friend Cleo that night, and I was secretly relieved to have an excuse not to go, mostly because I sucked at karate. The weird feeling got worse, and then it spread to my right hand. In just about an hour I was literally unable to walk or hold anything in my right hand. (Had I not known about the MS, I would have assumed I was having a stroke.)

"This could be it," I thought, sobbing as I tried to make my way down the hall at work. "I'll never walk again."

A kind soul helped me into a chair and my husband came and stuffed me in the car. We went to the ER to be sure I wasn't, in fact, having a stroke. One CT scan and several hours later (by then I was able to shuffle around on my own), I was released with instructions to call my neurologist the next morning. When I did, she prescribed a three-day course of intravenous steroids.

The first day of steroids, I went to a center where a nurse put me in a cushy recliner and monitored me to ensure nothing terrible would happen, like an allergic reaction. Once it was established that I could tolerate the steroids, a nurse came to my house to show me how to administer the following two days' worth. I had a catheter in my arm; she told me about changing the bag with the drugs in it, keeping the spot dry, and how to look pathetic while dragging around one of those stands with the IV attached.

The steroids worked wonders. After the three days were up, I was able to walk again and use my hand. I wasn't walking at what anyone could call a brisk clip, but I was just so damn happy to be WALKING that I didn't complain. (That's probably not true; I'm sure I did complain.)

Fast Forward

Now I'm going to fast forward several years, because (a) I'm getting tired of typing, (b) this entry is really long, and (c) my memory sucks. My Very First Relapse was the worst. I've had two other occasions to be given steroids. In the second instance, I was experiencing the MS Hug, a delightful feeling of intense pressure across your midsection. It's like wearing a very thick belt that's meant for someone four sizes smaller than you. During that episode, I lumbered around the workplace like the Hunchback of Notre Dame; I literally could not stand upright.

My third episode was a little more than a week's worth of shooting pains in my head. I called them "brain zaps," because I am incredibly clever. They were about a second's worth of stabbing pain and were totally random, although I could count on one every morning when I woke up and got out of bed. A pleasant way to start the day, indeed.

Little more fast-forwarding...I am no longer on Rebif, and I no longer see my kind neurologist. I am on Copaxone, which is a daily injection, and I see a doctor at Georgetown University Hospital in Washington, D.C. After a routine MRI, my neurologist decided that I had too many lesions (and at least one big one, which makes me think my brain looks like Jupiter with its giant red spot) for her to be comfortable handling. She wanted me to see an MS specialist. The doctor I'm seeing now is also very nice and patient and thorough. I have an appointment to see him Jan. 18. At that appointment, I'm going to ask him about the benefits of a dramatic diet that purports to work wonders in MS patients. It's called the Swank Diet. I am in no way affiliated with anyone related to the diet; I'm just hoping to share my experiences here. The diet looks pretty freaking hard, but I am lucky enough to have a husband who's willing to give it a go with me.

Here's a link that explains the basics:

http://www.swankmsdiet.org/About%20The%20Diet

I'll be checking in as I face 2013 with NO CHEESE (pizza is my favorite food). Ideally, in time, I'll have some tasty recipes to share.

Happy new year!

Ms. CrankyPants