What is PRIMARY PROGRESSIVE MS?

I remember when Karl was first diagnosed with PPMS. Karl had just come home from having emergency surgery on his spinal cord, and was barely able to get up out of his hospital bed and walk. A friend commented that one of her co-workers had MS and was still working and that he should just push himself harder. Anyone who knows Karl knows that pushing himself to do better or work harder was NEVER an issue.

There are LOTS and LOTS of folks with MS, despite the fact that its still considered and "orphan" disease, everyone seems to know someone with MS. There are 4 types of MS, the most common being relapsing remitting which means you have flare-ups but you eventually recover and continue on with your life. However Primary Progressive means there are NO remissions. Once onset occurs, your disease continues on from there, never giving you a breather. Think of it in this way, remember that flu you had when you were so sick and so tired you could barely raise your head? What if every day of your life felt like that? And what if you were faced with the realization that no matter how much rest you got, tomorrow you wouldn't get any better? THAT is primary Progressive MS.

The other thing tickling my brain is that Medical Marijuana is still greatly misunderstood. Even people close to us don't understand what it does for him. Why can't he just take a pill to treat his pain? Think about lifting weights and how your muscles get tight and hard when you're lifting. Now imagine holding that weight all day. Your muscles fatigue and start to shake. Karl's muscles are in a state of constant flex. When you touch his legs they are hard as a rock and spasming. The cannabis relaxes those muscles, as well as helping with the neuropathic pain that sends shooting pains down his arms and legs. Anyone who thinks that its all fun and games is a moron. Imagine getting up every morning and having to have a beer with breakfast so you could make it to the bathroom the rest of the day. Day after day after day. Not too appetizing a thought is it?

I hope I've managed to enlighten a few folks about the realities of living with PPMS.

Pain and "Medicine"-Medical Marijuana in New Mexico

I haven't been very involved in the world lately because the "pain" dial on my disease has been turned full right.  I went through a period of intense pain from my surgical site, which has subsided.  Now I am back to intense, unmanageable pain in both legs.  I'm not moving around much.

Why?  No medicine.  I promised myself that I would not breach the topic of illegal but utterly miraculous medications here, but I'm gong to have to talk about it.  The B.S. surrounding the topic of this stupid, stupid plant is frustrating.  I'll do a fly-by on the topic- the medical cannabis program in N.M. is a disaster, and it was designed to be one.  It won't be getting better any time soon, if it survives at all.  

I've talked about this with most of my friends, and it's very simple:  marijuana relieves all of my symptoms in a way that is pretty amazing to witness.  That said, REAL medicine does this.  I have yet to actually get anything from my "state approved medicine vendor" that isn't a thoroughly seeded mess or has been kiefed of all crystals.  This crap, "swag", only hints at relieving my symptoms, gives me headaches, and makes me cough.  Seeded marijuana also makes you crazy.  The real thing doesn't.

The real thing?  Unseeded flowers from the female plant.  That's it.  Period.  Anything else is swag, and I'm getting really tired of dealing with it.    

My latest delivery of "medicine" is a jar full of leaves and shake from god knows what plants.  I wouldn't be surprised to find soda straw wrappers or other small garbage in the jar, as it looks like it came from the bottom of a bag.  I paid for this stuff.  I'm not happy about this in the tiniest, little way- but I have to keep a happy face for my "state licensed vendor", or I may never see medicine again.  The call/response/get together relationship I have with my "state licensed vendor" doesn't seem much different from dealing with "non-licensed vendors" in that they never answer the phone, never tell the same story, never have anything real but have a small sample of something real to give you hope, and disappear for months at a time.

That's the way it is.  I actually like my state guy a lot, but the only real medicine I've ever had is on the side-samples of real stuff that is apparently for sale to other, more important clients.  I get the shake and the garbage, and I'm fed up.

By the way, marijuana is not addictive.  It is the "silver bullet" for my pain, and it feels great to smoke it, but if I don't have the real thing I don't want it at all, and it literally takes my wife bringing me a pipe full of the crap and encouraging me to smoke it so I feel better.  I don't want to.  I hate it.

The "real thing" I would recommend for everyone on the planet at least once a month to maintain sanity and mental health.  It's the greatest thing ever.  It's absolutely healthy.  The REAL THING.

Marijuana is hard to grow. I could spend a lot of time talking about that here, but there's tons of info on the web already.  Google it, and you'll be amazed to discover that growing this stuff is as complicated as cloning sheep- it's a delicate process that requires attention to detail.  I'm failing spectacularly at it.  I had one good crop about six months ago, and I really, really miss it.

I really hoped that our "state approved vendors" would have expertise and would produce real medicine, but they are not.

So, it hurts.  A lot.   I'm really tired,  and I'm just kind of trying to get through each day.  I'm hoping to establish a decent medicine routine some day, but the supply problem has to be solved first.

Back from the exam, and I'm still sick!

I am back from the physical that was mentioned in the last post.  It was short and I failed it spectacularly.  Sadly won't be able to return to the workforce at this time.

My suspicions about the test itself were well founded:  this was indeed a test designed to discredit, and the examiner is being asked to provide a lot of subjective input on the test findings.  It was supposed to be lengthy and difficult, but as I was having full body spasms in my wheelchair from the get go they decided it would not be safe to proceed.

And I didn't even have to talk about the "crazy" side of this business.  I guess if you are sick enough they assume that crazy is part of the package.

The folks at the PT place were absolutely awesome, and the PT guy was the first person to ever, ever, EVER read my chart before sitting down with me.  This saved me from the hour and a half recital of my medical history-which I've gotten used to with every new doctor (and some who just forget.)

UPS delivered my chart to my house yesterday for use in the exam, by the way- it was supposed to go to the PT office.  My chart with the insurance folks is about 2 inches thick and weighs close to 10 lbs.  Leigh read it.

important thing: Mysteriously, my pack also contained complete and very sensitive medical information for another patient who lives clear across the country.  I hope he didn't need it for his exam today.  This would be the doing of ECN, the go-between company that is scheduling exams on behalf of the Reed Group.  If anyone with influence in this situation is reading, and I know you are, ECN is screwing up the paperwork in a profound way that exposes several large entities to the possibility of litigation.   I sure hope the other dude didn't get a full copy of my chart too.  Leighanne is burning up the phone lines on this one- even though we're through the exam process we are concerned about the security of sensitive medical information, and believe that this other guy has every right to be angry about this.    

Anyway, I don't expect to have to take an exam again- but the disability folks are cleaning house. With our zeitgeist of  backlash against the 'lazy folks milking the system" we can expect more of this.

Not to say that those folks don't exist.  In the 90s I worked as the Unit Clerk/Bouncer at Edgemont Hospital-  a drug rehab and psych facility conveniently located smack dab on Hollywood Blvd.  If you think the folks wandering the streets of Hollywood are a little off, you should see what we had locked up.  But I digress- we did have a cadre of patients who would get their disability money on the first or so, leave the hospital, spend it all on drugs, then check themselves back in for the remainder of the month.  They are out there, they are homeless, and I don't know what the heck would happen to any of them if they lost their disability.  I don't think they'd suddenly clean up and become lawyers and doctors.  Something has to happen to break this social cycle.  Pulling the money out is a good start, but you'd better give these folks an alternative to crime and give them one honest shot at really cleaning up-we can't afford the cops we'd need to watch this segment of society if they lose their cash.  We'd better be smart about this.

Irrelevant stuff:
OK, now I'm heading back to Lord of the Rings Online.  In a daring move, my hobbit Mowse trekked the miles through hostile enemy territory- stealthing and quietly killing like a Mossad commando- to fully infiltrate the fortress of Dol Guldur(!) and grab screenshots.  For any old Tolkien heads out there, well this was pretty cool.  For hardcore gamers out there- the challenge of doing this was very, very real and I had to be supremely tactical to pull it off, and it wasn't a quest.  Is there anything more fun?

Along the way I looted no less than 50 legendary weapons, all of which sold on the bazaar, but have yet to find a single weapon for myself.  Now that's karma for you.  Hmmm, I suspect a ploy to keep us playing.

Anyway, that's where I am.  For any gamer buds who might read my blog: sorry but we aren't doing the guild thing right now.  Running towns, running guilds, settling petty disputes, officiating at character weddings-- nah. Leigh and I are just playing.  It would be cool to see people though and maybe we would form a loose band of real world friends if they were in here-but we're not building the mega-guild again.  Anyway, we're on Arkenstone if anyone else is playing, or drops in to check the game out.  It's free now, and it's very, very easy.  Loot is falling like candy and prosperity is everywhere.  The game economy is actually working and money is very, very easy to make.



 

As Predicted, They Try to Take My Benefits

Late addendum to this one:  first, the provider is now actually the Reed Group, ECM is an intermediary.)  Second, you never know who might be reading your blog.  Third, it's been communicated to me that this is happening because of Reed's take-over of Aetna's accounts, which I can understand-but it the end it's me who gets to go through the exam because of Aetna's lack of documentation.  Anyway, this is a gripe, but a gripe only and I'm going to the eval.



_____________
My docs have said I am an extremely paranoid person.  Personally, it's not paranoia if everyone really is constantly out to screw you.

Recently Intel's long-term benefits provider has changed from Aetna, a name I at least know, to some new company called "ECM."  As of a certified letter that arrived on Friday the 11th I am being scheduled for an all day (really, ALL DAY) invasive and intensive physical therapy review next week to determine if I'm really actually sick.

This review is being scheduled despite the following:
1) I have had many other independent reviews.
2)  I flew through an independent Medicare review of my disability status, and the gov't folks have no issues.  In fact, the doc at the Medicare provider said to call her if anyone ever tried to deny my benefits.
3)  My medical charts at my doctor's offices are six inches thick.  Workplace safety standards require that it be carried by two physician's assistants.
4)  The act of doing the review itself could very easily hospitalize me, which we made very clear to representatives of this insurance company.  They claim to have my primary care physician's buy-in on this testing, something I doubt very much and intend to check on today.

I'm not sure if I've done a good enough job of indicating how sick I am in these pages, and a some people have given me negative vibe over the perceived "whining"-- let me try again:

1. I am 44 years old.  Up until the age of 40 I was very used to working 12-16 hour days out of sheer love for my job and the people around me.  I was on company travel 80% of the time for a lot of years.  I made six figures.   I had life insurance, if I had died on company travel the payout to my family would have been amazing.  I have no life insurance now.  My kids don't have health insurance.  Neither does my wife.  
2. Now, I am poor(er) and have lost my house, not due to the market meltdown, but because I got sick.  The market meltdown was just very well timed for us.  Yup, we sold short.  I'm a credit criminal.   It was a close thing to even find a place to rent after losing our home.  My family has landed in isolation, miles away from our nearest relatives.  
3. I never, ever, EVER leave my house.  My day starts at 5:00am with a wakeup to unbelievable pain, and ends the same way at midnight or so.  I spend all the time in between writhing, passing out, and spasming-trapped an uncomfortable electric wheelchair that is broken most of the time.  There was a time when I could hobble, and there was a time when I used a cane, and there was a time when my disease flare ups were spaced at least a couple of hours apart.  Not anymore.
4. Oh, and the only place we non-persons could find to rent is a two story, which does not work for me in any way at all.  I make my way up and down the stairs once a day, by grabbing the banister and pulling while my wife pushes on my butt.  I have no idea what she's going to do if I fall.  So far when my legs give out I have lurched to the side and grabbed the rail, but I've actually started blacking out, so things are going to be interesting.
5. I own twelve or so electric guitars and about ten tons of equipment, which to me are the trophies of a life well spent.  I haven't touched them in a long time.  It hurts to play.  Bad.  
6. Without fail, going somewhere, anywhere, and doing anything at all will put me on my back in bed for several days, while I sleep for 20 hours a day or so.  
7. My immune system is destroyed.  If anyone is sick, I will catch it, it will be horrible, and it may put me in the hospital again.
8. Stress makes me more sick.

So, with that said, it pleases me to no end to suffer and twitch for the amusement of the new review board put together by my insurance provider to kick sick people to the curb.  I will make one thing very, very clear in writing, here:  If I end up hospitalized, sick, or suffering a setback from this review next week I WILL LITIGATE.  If this insurance company attempts to cut my benefits, I will litigate.  If I am mistreated in the exam by surly, unprofessional doctors or their assistants,  it will get ugly.  I am wondering if it is not smarter for me to find a lawyer immediately and properly define the relationship I have with this insurance provider, but lawyers want money too (or perhaps more.)  The bottom line is that I represent a whole lot of money that they don't want to pay, and it makes a lot more sense for them if I'm dead.  I'm surprised Aetna did not hire assassins-over the long term this is a lot of money.

I am damn tired of being accused of not being sick.   Be absolutely assured that the last thing I ever wanted to do in my life is rely on the bureaucratic, pragmatic evil of the insurance industry for my family's long term security.  This is the boat I'm in, and I don't have any choice but to row.

Still Here!

First off--- ouch.  I've been having a pain spike for the last couple of days.  Everywhere, feet and neck mostly.    When the pain is up, so are the meds-and I don't really trust myself to blog when I'm super medicated.

There's also way too much going on in the world right now for me to focus on any one thing.  I don't know where to begin.

So, I've checked out for the last week and sunk back into Lord of the Rings Online.  I was Tolkien when it wasn't cool, lol, and I'm perfectly happy to simply walk from Forochel to Bree and explore Silmarillion land.  As far as addictions go, I'm only co-dependent here:  My wife is the over-achieving guild leader/instance runner type.  The whole family is playing this game together (somewhat), we're actually in the same room kicking orc butt together.  Having fun.  I'll be back with more significant offerings soon.

An Awesome Lunch

I just got back from the most awesome reunion of friends, lunch with the "Intel" crowd at Weck's. (papas, oh yeah).  You know, I used to approach lunches with these pals with trepidation--I realize now looking back that I was way, way too concerned with what people thought of me to actually engage with my friends, take an interest in their lives-- I was too busy trying to impress, but trying to be cool about it, to remember to love these people. Crazy way to live.  I am so glad I somehow snapped out of that bulllshit.

I was excited about getting there all morning, and it was amazing. This is a big deal for a guy who hasn't really been out in three years.  This is a group of the most intelligent and fascinating people I've ever met-hanging out with these folks has been an honor.  I've got to say, they are pretty damn tolerant too!  I can see it now, though when you're in the depths of the sickness you can't, I felt like an impostor, and I always felt I had to prove myself to these folks because I really didn't have any right to be in the job I was in. I was scared-scared that a huge social fuck-up could end the comfort my family enjoyed.  And somehow the fools over at Intel kept making me interact with people in higher and higher "levels" of society.  Man, I can act.  Sheer, raw terror over the eventual fuck-up that would destroy my family as I flew all over the continent working 18 hr days to accomplish impossible tasks with flawed technology.  I drank, drank, drank, and then drank some more- which of course actually did lead to appalling social fuck-ups in some unbelievable places and some out of control and needy behavior.

I went to lunch to day damn excited to see these guys, and for the first time ever in a social situation I actually listened to and was interested in the things they said.  We shared some awesome stories over some very fun times when the group we worked for first started.  I haven't smiled as a habit in a long, long time-and definitely not sober- but I'm smiling now.  I haven't laughed that hard in--hmm,  thinking,  ever?  I've never felt more alive and connected. Thanks guys.  Now I have work to do.  I don't know what, but it's great to be out again.  

And you know what?  This morning SUCKED!  I was in absolute full twitch and throbbing pain, despite 1 1/2 hydrocodone and lots of "prn's."  So, I put my foot down with my disease and said "I'm going, no matter what happens, no matter if I get there in agony, no matter if I act like a fool.  I actually do have full documentation that I am legally insane, blind and crippled.  It's a license to get away with bizarre behavior anyway.  It's only my daughter's strict sense of decency and morals that has stopped me from doing things like: hanging out in an airport with a can, playing guitar on the street downtown, or washing windows at intersections.  You've got to understand my sense of humor to understand why I'd think that's funny.  My daughter does not.

Anyway, in hindsight I regret that despite respecting and admiring my friends, I was also afraid of them.  I felt constantly challenged, threatened and judged.  I felt like I was stuck someplace I shouldn't be, and that my family was hanging by a thread, and that I was bound to do something really, really stupid and drop the ball for everyone.  I think a lot of people may feel this sometimes,  the infamous sword of Damocles.  It stopped me from knowing how cool my friends really are, and what an awesome support system was always there for me.  I was this way with every single relationship in my life.  Even with my wife.  All my relationships were very, very two dimensional-and no one, absolutely no one was allowed to the third dimension.  The third dimension was confused, angry, and alternately huddling in a corner or lashing out.

I don't really know why I'm better now and can look at it from the outside.  My old life is now just a shadow of a sick and confused time.  How I kept my marriage or my friends, I'll never know.  You guys rock.

And, you gave me the most amazing feedback on this blog-- which I thought was becoming an exercise in narcissism.  I say "I" too much.  I figured people found this annoying.  I wasn't looking for and didn't expect the compliments on my writing.  I'm blown away, and I'll definitely continue.  This is shaping up to be the most awesome time of my life- who would have thought?  An awesome time can hit you out of the blue and change your whole world.  We should all have one at least once a week.

And, back on topic-what is MS and why should I care?

First, from what I've heard, the "Dark Side" post from a few days ago has been kind of misunderstood.  What I'm trying to do in this blog is simply capture and share my experiences with MS.  I'm not whining when I should be fighting, etc.-  What bothers me is that I was very sick for a very long time and it was missed, and because it was missed it got really, really bad.  I hope that this helps someone get insight into their symptoms and it gets them to the doctor earlier, armed with the info they need.  Frankly, when this kind of thing happens to you it feels like you're losing your mind, because you are.  It can take a long time to get a diagnosis, and there's still very little information around, outside of clinical documents that don't really tell you anything.


The "Dark Side" entry was a bad episode-and with this disease they can come out of nowhere.  Bad exacerbations are usually a combination of psychological and physical problems.   Here's why:


Multiple Sclerosis is the condition caused when the immune system mistakenly attacks the brain and central nervous system.  Scar tissue forms on the damaged nerves, causing the central nervous system to short out.  It's like having stripped wiring.  Damage can occur anywhere, but is often visible in the brain and spinal cord with an MRI.  Spinal fluid is also tested, and visual tests are performed to get to a final diagnosis.


With the vast majority of people, MS will manifest itself in "bad" and "good" spells, which can last months at a time.  This is relapsing/remitting MS.  With this form of the disease (or more likely the disease in this early stage) there are many treatment options, and more progress is made daily.   The relapses can be devastating, and the unpredictable "up/down" life is hard-but many patients still work full time jobs and manage the disease with a combination of medications and physical therapies.  Many employers are now more understanding with the downside of the disease also.  New drug therapies have been developed that may actually arrest the progress of the disease in the relapsing/remitting stage.  


More rarely a person will develop progressive MS- this is MS with a steady decline in function and acceleration of symptoms-no remissions. There are no known treatments for this condition/stage, though there are some experimental options and some drugs that show anecdotal and debatable results.  I still can't get a clear answer if this is because of relapsing/remitting left untreated for too long, or if this is an entirely different condition.  In fact, everything I just said regarding the disease is the subject of spirited debate.


What happens?  Here's the tricky part.  Onsets of MS are sometimes obvious:  if you wake up blind, the doctor will check for it.  Other times MS can manifest itself with strange and subtle recurring symptoms, recurring periods of illness,  or psychological issues.  Other conditions can mask the presence of MS.


I had very subtle symptoms over years that in hindsight make sense, but didn't add up to a lot of concern.  When things did start getting more serious, my MS was masked by a very bad spinal injury caused by a congenital arthritic condition.  The story:  I had been chasing problems with numbness/tingling in my hands for many, many years.  I went to sports guys, many doctors, and even a hand specialist.  Everyone said it was carpal tunnel, though nothing resolved the issue.  Finally, after nearly 20 years, a doctor tested my nerve connections and the ball started rolling.  They found a horrible compression in my spinal column-- down to 1/8th in the C spine.  They fused it.


No doctor  is going to find the cause of a problem (numbness) and keep on looking for other causes for the same problem.  I was blessed that on looking at my surgical films a very talented doctor told me to focus on recovering from my spinal issues, then talk to my primary about "A disease with initials."  That's all he could say.  I had to do the rest on my own with the internet. 


And then I had to "sell" my primary- who had been taught that people with MS go blind, always.  Getting him to  move forward literally took me waiting for a very bad episode, then heading to his office in "full twitch."  It caused a general panic at his office-where they're really not used to dealing with odds-defying, unusual diseases.  An MRI revealed advanced demilination(sp?).   The disease was obvious and moderately advanced.


I then had visual testing done and failed spectacularly.  I declined the spinal tap because of my recent spinal surgery.  (It has been done since, yup-positive.)  Then commenced a year or so of doctors accusing me of not having MS, re-starting the process from square one, and coming to the same conclusions.  I had the primary doctor at the "MS Center" in Philadelphia look at me skeptically from top to bottom, refuse to acknowledge my MRIs or test results, then tell me it was high blood pressure.  He told me to come back in a year.   I had a new neurologist the next week.  Incidentally, I've never had high blood pressure-other than the high blood pressure he caused me. 


I'm now a patient of one of the best neurologists in my state, and the sad truth is that there isn't a dang thing she can do.  I've tried some experimental therapies that I'll get into in my next post-nothing has worked, and it was all very risky.  On my last appointment she reviewed my films, kind of shrugged and said "OK, six months?"   I am seeing her next week, because of the "Dark Side" episode.  


Anyway, it's my hope that I can help someone avoid this nonsense by knowing about the illness, rare as it is, and getting right treatment as early as possible.