My 2 cents on la la land

I recently read a post from someone with MS.
....ain't that a shocker?  I mean, I would love to spend my time on the net looking at porn, or maybe buying shit off eBay, or even researching something fascinating.  But, not so much. I guess I got bigger fish to fry.  I read MS blogs. I wanna know how people feel, how they are doing....any new meds, maybe even a tip or two.

In regards to the title of this post...I really mean it. I am gonna give my two cents on la la land.

I had been bouncing from blog to blog....some drenched in MS, some adding MS to their post like you add paprika to potato salad. You know... A little bit of color, a tad flavor boost.

I had to laugh at this one guys post.  For the most part I get him.  He had said something about 'throat punching people that say that getting MS was a blessing'.  That is a loose quote. Cannot remember exactly, and I am not too bothered to go find and quote the shit properly. This ain't an essay.

Well, I had to laugh because I think I actually read one of the MS blogs that most likely inspired him to write that.  Unfuckingreal.


But, what prompted me to write this morning is a different blog.  The author of it has MS and instead of feeling her MS is a blessing, she actually feels her MS is fucking special.  Her doctor thinks she is the MS shit and is going to write about her.  Well, that's equally as disturbing as the whole Being happy for MS because it changed their life for the better...etc.

Are we just that pathetic that that does it for us?  Seriously?  Your MS is better than mine?  Your chronic illness is way more special?  Jesus.

I feel it truly goes hand in hand with the whole throat punching prompt.  A special MS patient vs. a blessed MS patient.  Who knows....maybe the formers parents told her she was the prettiest little girl in the whole wide world on a daily basis when she was wee. And maybe the blessed guy is an extreme optimist.  I don't think either is right, nor do I think they are wrong.  I do, however, feel that they both have summer houses in la la land.  But, hey....you gotta do what you gotta do to get you through.  So, if one of them is so blessed because MS has given them a wonderful crippled pain filled life, so be it. And if one of them is the exception, not the rule of MS...all fucking special and shit, well.... Good for her.

But, the blogger is right. I agree with him. They are fucking liars.  They just might not know it.....which only means they believe their lies.

So perception is reality..... I guess I live in the here and the now.  I don't feel special...millions of poor bastards have this disease.  I don't feel blessed....MS has put a huge burden on my family, and crippled me physically, in turn crippling me mentally and emotionally in some respects.

But hey.....whatever gets you through the day, man.
Are we as people so fucking pathetic that we will just take it anywhere we can get it?

A little liberation goes a long way

To continue on with my previous post regarding what's new with me.. (last post turned into a total pigeon post).

Glenny bought a house on 62 acres.  In the country, heavily wooded lot. Tons of privacy....62 acres is a lot of private land to explore.  Being the cripple I am....that was something new that depressed me, the reminder of inability. Access free.  A big N-O.
Sucky because prior to, I was an outdoors chick. Hiking, mountain biking, trail jogger, etc.  loved the outdoors in Vermont, loved the adventure and freedom.  Mainly I loved the fact that I got the fuck away from people in general. The further I am from people, the happier I am.
So, what to do in such a dilemma?  Well, get someone that loves you to buy you a four wheeler. Not just any four wheeler....a white Honda rubicon four wheeler that is automatic.  No need for feet.  This is too awesome considering my dead weak numb feet are pretty useless.
This four wheeler is the new love of my life. I got a major crush on it when it was a possibility, but now that it was bought for me....ahhhhhhh. Love.  It takes my crippled ass all through these woods.  It makes trails.  It eats saplings and easily negotiates hills, streams, and downed trees.  Damn, I am in love.  I honestly forget about this disease while I am motoring through.  Too cool. Too awesome.  And I admit I love getting back in touch with my inner redneck.
     And seriously.....I can't help but admit that if I could substitute this badass four wheeler for my wimpy wheelchair, I would probably love being in public.  No shit.  I hate wheelchairs because it is degrading being eye level with everyone's asses in a checkout line, in an elevator, in a store aisle.... I am so sick of seeing asses.  Granted, I am thankful I don't have to look at their faces....I suppose their ass is the better deal.
I suppose the point I am trying to make is that for some reason the four wheeler enables me to feel like how I used to feel. I feel like the original version of myself.  Kinda badass. :)
In a wheelchair....I feel ....helpless or something.  I am unsure if others feel that way. Of course I can only assume I am pissing someone off by saying that.  Because I am sure there is some noble wheelchair bitch that feels like a badass on their power scooter or in their chair. Whatever, that's you. I don't give a fuck if you disagree with me.

For whoever reads, has read, anything I have ever written on this here blog....you most likely know, or vaguely recall, that I lived in the city for a decade.  I was fine with it for the first 8 years. Why?  I worked all of the time, and when I wasn't working I was in the mountains, woods or the lake.  So, I basically slept there....ate there.  Hung my hat there.  But the past few years of being a fucking slug....you notice a lot. Like neighbors. Omfg.  Traffic, alarms, horns, the smell of other peoples dinner cooking, two blocks away dogs barking, etc.

This is really just turning into an ode to my four wheeler. My woods legs. My mobility.  Actually being back in nature.  It's frisking beautiful out there.
We have huge ledges, which is covered with shit. Eastern coyote shit to be exact. Which I am sooooo desperate to see.  A coyote and grey wolf blend.  Nice.  Live right in the back yard.  Along with black bear.  I drove over some black bear shit last weekend. Gross. And we heard one, and Glenn always carrys a pistol. A wee pistol. Seriously.  I have a big black shotgun which is really intimidating...scares the shit out of me, but I never take it with me when I go.

My mental state is kind of the same. I mean yes, there is a lot of positives that hold the hand of the four wheeler.....but, keep in mind I am highly critical of myself....blame my Eurocentric childhood.
I am always reminded of the no.  The cant. The are you fucking kidding me.  The ms.  I can ride like a mad woman...but if I need to pee?  Hahah. Good luck to me getting myself off the fucking thing and getting my jeans down near a tree before I piss myself.  That reminder keeps me in check.
That's the reality. But, I'll take it. You're fucking right I will.  I haven't smiled this much in a while.
.....I am even going to post a pic of my beloved four wheeler.  Like I said....the current love of my life.

Five months later....

Gotta point out the obvious, and note that I haven't done this posting blogging thing for a while.  5 months later, and boom! Here I am.

A lot has actually happened in my life, a lot is currently happening...just like everyone else in their lives.

My low need for affiliation hasn't changes, so no news on that.  Still haven't made a single friend. Still no change in my ms.  Still haven't 'taken a walk' anywhere.

But, for anyone that cares to read about some crippled chicks life as a distraction from their own, or perhaps to satiate the innate nosy inner self..... Here's my new shit.

1.  A pigeon. Yep, I now live with a pigeon.  I didn't set out to live with a pigeon, never even crossed my mind.  In fact, I have never been interested in birds as a pet or companion.  I have always thought that they were pretty, or funny, or fucking obnoxious (blue jays).
     Still....this summer, we had a very intense storm, one of many.  This particular storm knocked out power, broke trees in half (no shit), wrecked bridges and some roads.  It was epic wind and heavy rain.  The next day, in the calmness afterwards, I discovered a little white bird sitting on the woodpile on my back porch.  He actually scared the shit out of me.  I was letting Rommel take a pee, and I was going to have a smoke.  When I sat down, I noticed something white and moving...startling me.  He hopped up higher on the logs when I looked at him.  Rommels presence didn't phase him either.  I took a couple pics of him, thinking that it was cute and how odd that he wasn't flying away.
    Flash forward a few hours....my neighbor has a homicidal cat. A bird killing machine type cat.  This cat is clever, adept, sneaky.  He has claimed the lives of countless squirrels, mice, moles, and birds.  This cat has an unquenchable bloodlust for little furries and feathers.  I had gotten closer to the little bird and noticed a rusty color that was speckled and staining his white feathers. Blood....ahhh. Perhaps this little guy was a tad more clever that the jack the ripper cat?  Escaped with claw or teeth injuries?  Regardless of how he was injured....my crippled heart immediately went out to this tiny handicapped bird.  I wanted to give him a little help at life.  I called my brother for help....I needed him because I cannot stand and reach and my balance is fucked.  My brother came, we made a makeshift house, he caught him and voila.  Safe bird.
     Since I know jack shit about birds, bird health, how to care for an injured bird, etc....I did what most anyone would do. I called rommels vet.  No luck, but they did advise me to contact fish and game, and that they had a bird rehabber I could call.
     Readers digest version?  Got him a cage, seed, a toy, gave him a cute pillow.....brought him to the bird rehabber and found out that he is NOT wild.  He didn't, however, have any bands or identification.  She said take him home....enjoy him.  I did place an add on Craigslist, making sure no one was missing him.  *on a different note, I cannot believe what a bunch of trolling fucking idiots peruse listing, not reading them, just so they can respond to you insultingly.  Seriously. I had some bitch write to me and tell me she was reporting me for catching wild animals and trying to profit off them. Wtf? I gave her a piece of my mind....which was dumb of me.  ...my grandfather always said to never fight with a cripple or a fool....and she wasn't cripple. She was a fucking moron.
     So.....looooong story short.  I have a do,estic feral pigoen that lives with me. He has his own room.  His name is BB. There it is.

He is an absolute joy to be around.  His intellect is impressive. He is funny. Very tame...well, he wasn't at first, but is now.  When I found him, the rehabber told me, he was less than 20 days old.  A squeaker.  She said he most likely got knocked out of the nest or lost the flock due to the storm.

MS forum equally disabling

I read MS blogs, here and there. I also read non MS blogs here and there....I DO NOT read blogs that people stick payment buttons on. That turns me right off...but hey, that's me.


In regards to the title of this blog....

I decided, today, to join an MS forum. I have read on it a few times, and thought, what the hell. Maybe I would post, get some feedback, etc.

Well, I posted. Or at least tried to. I attempted to post about chemo (novantrone) for MS. Since I have been on it, I was curious how other MSers have done.

The post was immediately stuck in queue...awaiting a moderators approval.?? Wtf? So, I decided to wait a little while, and read more. Then decided I would change my totally anonymous and androgynous avatar to a pic of Rommel and I. Well, that too needs a moderators approval.

Fucking seriously? Like what evil bastard trolls caused this bullshit? Is it possible moderator approved because some MS folk will be harmed by a swear here or there?

I use a wheelchair, man....I think I can handle an 'f' bomb.....(obviously I can handle it, I use it enough).

Unfuckingreal. So, needless to say....I am crippled by this disease, and then joined a forum that crippled me again.

Who knows, maybe they are really anal about spam, trolls, jerk faces, or whatever occasionally evil fuck that will go there and taunt some of them. I dunno. I am done with the forum, in a matter of moments. Well, about 15 minutes total.

I registered, posted....waited for approval....posted again about posts awaiting approval....then logged out, and am done.

Uhthoffs can suck it...

I don't do well in heat/humidity.

In addition to feeling my energy drain away like an ice cube in the sun, the pain/sensations are a lot to deal with.

We are under tornado watch right now. I actually am welcoming it because it is bringing cooler air along with its threat. Ahhh. It has been hot, sunny, muggy. 10 minutes in the sun guarantees me a migraine.

I had an appointment last month, which I cancelled (again). I keep canceling/rescheduling. I am uninterested in talking about more chemotherapy. I am not gonna take tegretol. I am not going to take ampyra. Not much else to discuss. No new attacks. No improvements. Just, as per temperature changes, headaches, heightened fatigue, new born foal legs made of lead, numb, cement block feet. Etc, mostly etc.

Despite this shit, I am very excited to get the boat out on the lake. Rommel just got his new life preserver in the mail...which happens to be MS orange. (they didn't have green in stock, only orange). Which, I am sure, the orange will be good for visibility in the water. You won't miss him...a huge, wolf looking shepherd floating around in an orange dog life vest. How cute is that shit, eh?!

I am looking forward to swimming. I can't walk for shit, but I can swim good. I fatigue very easily, but the cool lake water seems to keep me peppy enough. I am not gonna question it. I love swimming.....it's the leg cramps I worry about. But, I do it safely. Take plenty of precautions.

hey pretty

Post hurricane Irene....man

so, a cripple walks into a bar and the bartender says....

no punchline.... guess it isn't a joke.  but, being a cripple....ill make fun of it all i want.

i got a couple worthless, million dollar questions recently.

1.  what would I say to someone who doesn't have legs?  my instant answer was, "they (legs) ain't all they're cracked up to be."
only cos mine don't work for shit, i suppose.  but, there are benefits to having these numb, spastic, painful, dead things attached to me.  but, all in all. that was my answer, and i am sticking with it.

***and while i do have these 'why the fuck would someone ask me that' moments......what the hell.

2.  would i keep my life the way it was/is (i.e. be mobile ALL my life, then BOOM...have my mobility taken from me. Or, would i rather be crippled right outta the gate?

um.....jesus.  i am still throwing that one around.  it isn't by any standard a thought consumer....but, i have spent a little time on it.

pros and cons to both.  both ultimately suck the bag.  both piss me off.  the 'would you rather' game is supposed to be funny/gross.....not rub your nose in your own crippled shit.

actually, before this becomes an MS cesspool....I have to admit, being crippled hasn't been at the top of my list as of late.  with the weather shift in Vermont... (cold, hot, cold, warm, freezing, sweaty, hot, cold, warm, etc) my body has been doing its typical painful adjustments to temperature changes.

the pain i have had over the last month have been...pretty epic.  tiny electrical explosions.  stabbing.  burning.  tooth-aching, throbbing, gross pain.  my left foots instep that never meets the floor...causes a wave of nausea when pressed (like accidentally stepping on one of Rommels toys/bones).  pinpoint, bursting pain in my head that leave a blood taste in my mouth. yummy.  waves of 'ow'.  The MS hug....loving the shit out of me....

shit.  so, no....the cripple bit hasn't been up front for me as of late.  I like bitching less about it. ;) (or, do i?)

one MSer had one mentioned the amount of bitching people (including me) with MS do.  and, trust me, they do/did bitch, and bitch.....  and i am like, wtf?  you have MS, I have MS, all the MSers blogs bitching about MS?! DUH!  why the fuck wouldn't they.  cripes.  get it out. vent it out.  its a friggin blog.  and, its yours/theirs/mine.  

but, hey. whatever gets ya through the day, right?  i am admittedly pretty intolerant of people....so, if someone cant tolerate me..... seriously, dude, no biggie.

I am in it for the parking....

I saw that on a tshirt, and laughed my ass off. It's right up my alley...a darker humor. However, I know some people that have handicapped plaquards, and really do not NEED them. I use a wheelchair, and since I am Rollin, G. 95%of the time doesn't park in a handicap spot...I don't think I need it, not really. And I always consider the fact that there is someone much worse off than I, and I do not want to take up one of the few spots left. That is just how I am. Well, last week, G and I went shopping, yet I decided I didn't want to go in. Just wasn't feeling it. So, he parked about 3 spots away from the handicapped spots. Basically, I had a birds eye view of the vehicles occupying the handicapped spots. Since I didn't feel like reading my book, I decided to people watch. I started trying to pick out which vehicle belonged to the people exiting the store. In about 10 minutes in the bed, bath and beyond parking lot, I had matched the correct vehicle to one person. A cute, petite chick with a HUGE shopping bag that got into a focus. Yay me...the next miss Cleo? HAR. Well, I see this chick, fucking sprinting from the store (it had started to rain), she is hauling ass with her bag in her hand, and holding her purse above her head so her hair won't get wet. I am quickly trying to pick which car is hers, and before I can, she is getting into one of the vehicles in the handicapped spots. Seriously? Fucking seriously?

Pain. And another painting

Crushing hug
At times, short of breath.
This goddamned hip is feels like its ready to pop out of its socket.
I might need hip surgery ... In my thirties. Due to steroids.

Pocket pisser

This is the name G. And I have given to the travel John portable pocket urinal. This thing is amazing. It has been beneficial for my MS incontinence. I can leave the house with a sense of security, knowing that I got the pant pissing thing under control. I don't know about your MS, but mine has given me urinary urgency. Combine that urgency with the inability to walk unassisted, and you got yourself some wet jeans, man. Prior to finding the travel John portable urinals, when we left the house, I was obsessive about my impending urge to have to go. That is also crippling....seriously. Poor g., desperately trying to find a discreet pull off...then, having to hustle to try to hep me get to the spot. Sucks. But now, I am ecstatic as hell. I feel some control. And, to boot, now that I don't have any anxiety about having to piss, I can enjoy the ride. My main issue with urination during travel isn't finding a bathroom in a rest area, or gas station. They seem to be everywhere. My problem is that my spasticity is really bad, and I need assistance. After sitting in a car for an hour or more, I get extremely stiff. I don't move fast to begin with, but right outta the car after an hour of sitting, I move like a rusty tin man. So, using a gas station bathroom isn't an option because I cannot hold it. When I gotta go, I gotta go. So, if you have any urgency issues, or, if you just want to piss in your car with no odor, no mess, then get some pocket pissers (travel johns). I think you can find them at hunting type stores if you live near a gander mountains, but I got mine online. When we went on our 2 week US tour, I took them with me, and used when necessary. Like ABSOLUTLY necessary....I used reast areas, and gas station bathroom the majority of the time. But I had them handy for when I knew I wouldn't be able to make it. So, there it is....

Super moon

the moon was wicked pretty last night.  14%  bigger than how we are accustomed to seeing it.  I wanted to take some pics, and my tripod was upstairs.  I didnt have the leg energy to go get it and schlepp it back down and outside.  I could have asked G., but I didnt.  He has enough shit to contend with..

So, I went out, in all of my glorious spasticity, and tried taking a couple pics.  Bouncy, bouncy, bouncy.  

The pics were all crap, beyond blurred.  The F stop is manually set, aperture open longer...need a steady hand. so, I got pissed, and went to bed.  G. could tell i was pissy, and asked me if i wanted him to either take the pic for me, or if i wanted him to go stand oout back, as a human anchor, so that I could lean on him.  I said no,grumbling.  After about 15 minutes, he drifted off.  Seriously, this guy could sleep hanging from a meat hook.  I was determined to get a pic that wasnt blurry.  So, Rommel and i headed back outside.  I sat my ass down, braced myself by leaning heavily into the porch, and I finally got one.  yay.  small victories make me all happy. 

here are a couple shots of this big, beautiful bastard.

Rommel

My dog will definitely be peppered throughout my posts, but I wanted to post specifically about him, and what he has done for me...what he means to me...etc.

Like a gushing Mama, ill start off by telling you all about Mr. Rommel dog.  A euro black sable german shepherd, Rommel is over 100lbs of love.  G, (my BF), and I had talked about getting a kind of big dog for home protection.  Since I could no longer work, and G was gone all night busting his ass, I was home alone.  G had ADT installed, but isnt soft, loyal, loving protection better?  the companionship, the laughs. ADT is awesome, but I take Rommel, hands down.

  When we had finally decided on the breed, (we thought about dobermans, too) i set out on an online mission to find a reputable, respectable, knowledgeable breeder. It took about a month, month and a half to find the kennel we ultimately decided to go with.  I began talking to the breeder, Tanya, about everything I did/didnt want in a GSD.  She had done temperament testing on a litter that she had pups available, and none of them fit my criterial. They were working lines, had strong drives, and she didnt feel that they would grow into a good match for my crippled, sedentary lifestyle.  She had another female that was due, and explained that the parents were exceptional, and would produce pups with the characteristics I was looking for.  

(Tanya has very few litters a year.  One per dam, and she has 4 dams.  I had my fingers crossed)

The pups were born in July 08.  She had sent me pics of the litter just so I could oh and aw over the pile of cuteness.  After he first round of temperament tests, she had told me "orange sable male" would most likely be my puppy, but there were a couple weeks to go with testing and observation.  she sent pics again, and my eyes immediately scanned for the pup in the orange collar. OMG! what a cutie! hell, they were all cute...who am i kidding?  So, she did the final round and orange sable male was my pup.  I finalized payment, signed the neuter contract, signed the first full year of vitamins contract, etc....In September, little puppy Rommel was on a plane from Ocala Florida.  I was so jacked!! I couldnt wait to see him. Before my sister and i went to the airport, I called. His flight was delayed. Boo.  It was gonna be another hour or more....I called 45 min later, and it was delayed another 40 mintues. crapola.  Finally, we head to the airport.  We get to the desk, I hand them my paperwork, anxiously looking around to see a kennel.  The guy behind the counter told me that the puppy was adorable and so quite, hadnt made a peep.  I looked in and there he was.  Laying down, with his little head up, eyes alert and interested.  we got back to the car, i cut off the zip ties, opened the little gate, and he came out and sat down and looked at me.  My face hurt from smiling.  My sister was in total girl mode too...'shepeherds are the cutest puppies in the world!'  (they are frigging adorable!)

And Rommel was home.  He was so little.  Presently, his head is bigger than his entire being, back in the day. He is an incredibly handsome wolfman.

The above pic is Rommo in a hotel in Estes Park Colorado, and those are Gs hairy legs...not mine. ;)

Rommel is everything we wanted.  Highly intelligent. Strong.  Secure.  Protective, and can differentiate situations with strangers.  He rocks.

In terms of my MS;  I have felt like such a shitty dog mom because i cant walk him/walk with him, run/play with him...but, thats all when i get down with myself and am either negative or self pitying.  Rommel doesnt care about my disabilities.  If i fall, he is right there, looking at me like 'wtf? you OK?'  

He kept me going when i swan dived into depression, and had contemplated suicide.  he was always there, and the reason I got up everyday.  He makes me laugh...every day.  

It amazes me, the impact these hair machines have on us....unless you dont like dogs...which, should be illegal.....honestly, have you no soul?

MS loves me

I can tell because of how tight it hugs me. The MS hug. Now that is something else. I envision Victorian ladies getting all cinched up in their corsets, and shit. One one MS chicks blog, she talks about how she combats the MS hug. She basically wrote that she wears a very tight sports bra, or some other über restrictive clothing. I have to agree. The only relief I get from an MS hug is with pressure. Years ago, I had only read about the hug. I was reading and thinking, 'damn, thank god I don't have that'. Now that I have it, I read about remedies. My neuro has prescribed me a ton of meds for pain over the years. I have chronic pain, and thus far, I haven't found a med that relieves me. I have an aversion to meds. I have fear of dependency. I have a bigger fear of side effects. I know quite a few MSers that take daily meds for pain relief, and I am glad that they were able to find something that can help them. I had some really bad reactions, one allergic, the others were undesirable side effects I didn't want to live with. But, if you also fall victim to the squeezing MS hug, try that chicks method of pressure. It worked for me. And hey, any relief is good relief.

how some MSers piss me off...

this is a touchy subject.  i dont think anyone likes chronic illness....i cannot fathom anyone loving thier disease. 
i had mentioned, in a previous post, about how some people with MS piss me off.  And, I am now gonna bring up a fellow MSers blog post about people that one-up with their chronic illness.  she refers to them as the 'out sick you' person.

i suppose i can weave my words and try to tackle them both simultalneously.....

as far as a one-upper....there are some people that have it way worse...waaaaay fucking worse.  I have been reading on this chicks MS blog about her feeding tube, and that she can no longer speak cos MS stole her voice and the ability to swallow.  Cripes. that blows, big time.  Now...here is my question.  if someone else with MS doesnt have THOSE symptoms, or even symptoms as bad as that....is this lady an out sick you person? or, does she just have it worse than you?  I am going with the latter here. facts are facts.  now being able to swallow or talk is WAY fucking worse than having a tingling lip, or some spasticity. 

that kinda touches on both...but to elaborate on why I get pissed at some MSers, I am gonna explain it with some personal experiences.

*I have never been an extremely social animal, ever.  I have always had few close friends, a couple aquaintances, and been close to select family throughout my lifetime on this planet.  When I became a cripple, I was encouraged to reach out to others with MS online.  Perhaps relating to them, building friendshipsm supportm etc....so, i did........

I had been open online about being in a wheelchair, and being pretty pissed off about it.  One MSer, had recently become diagnosed.  He is in his early 30s.  He went through some shit early, was in remission, had ZERO mobility issues.  He started to tell me how he was immediately going to the SS offce to fillfor SSD.  At this point, all wheelchair bound, I hadnt even filed for it.  He was angry with the diagnosis, claimed his life was over, quit his job, moved in with family, and sat in a room all day, depressed.  No mobility issues to speak of, none.  So....i unfriended him.

Call me intolerant, unsympathetic....but i thought he was fucking pathetic.  and I cannot tolerate that shit.

(a quick disclaimer or whatever....i dont want anyone getting the wrong impression of me right out of the gate.  I am wildly misunderstood, as i am not the best communticator.  I am not jealous or bitter of anyone elses mobility.  i am not in a constant state of pity.  I am not, as a whole, negative.  I just really have a problem with MSers that ADMITTEDLY have no mobility issues, and whine to MSers in wheelchairs about how shitty their life is. thats all.)

then, i met chick online with MS.  she is in her 20s.  we had a few things in common outside of MS, which was neat.  So, we actually spent a lot of time exchanging emails about the shit were were mutually interested in.  Recipies,  dogs, music, movies, etc.  Eventually, we got down to the nitty gritty...and started to dish out our MS shit.  What sparked it was that she had posted about feeling down/depressed bcause she had to call into work, missed work because of her MS.  It was affecting her life, and she was sick of it. she hated this disease, etc.  I felt bad for her.  i felt for her.  so, i send off and email.  I decide to open up. besides my own generic symptom list, i decided to reallllly open up.  Get into some of my personal fears, issues, how i was dealing with disabiltiy, etc.
a couple days later, i get her email.  she thanks me for being so open. and she gets me. she understands. TOTALLY. (i am feeling really good, happy...warm)  then, i continue reading....she goes on to say that her lip had been tigling, driving her 'nuts', and thats why she had to miss work.  (...huh?!)  then, she goes into detail about how she knows exactly where i am coming from because her fatigue and MS were soooo  bad that she was only able to take a 30 mile bike ride, as opposed to her normal 35 milke bike ride.  She also complained about wanting to trade her vehicle in, becuase the one she was driving was 2 years old....(i am reading this shit, thinking seriously???) 

so....maybe i am an intolerant asshole.....but i unfriended her as well.

i have been perusing MS blogs for years....trying to find people to relate to.  I admit, i have read some MSers blogs and cried like a small child.  I have read some and been inspired.  I have read some and gained insight. 

and, i have read some, and thought "you pathetic bastard/bitch".  but hey, thats me.

i suppose people could easily read my blog and think, 'this bitch is angry cos she is cripple, so she doesnt have sympathy for my MS cos I can still walk'.  well, yeah, kind of.  i wouldnt be angry because you can walk and i cant. no.  i would be angry because you can walk and are whining about it.  big deal your lip tingles.  my opinion.  and NOT everyone diagnosed with MSwill end up in a wheelchair.  Not everyone with MS has the same symptoms.  I am in a wheelchair, numb, in pain everyday....but, an MS friend of mine has no pain, but is in a wheelchair.  but she has trouble with her arms, i do not.  but when i laugh or cry with her about my lack of mobility, she never thinks i am trying to out sick her, nor does she think that i am diminishing her symptoms.  and, vice versa.

I spoke to a very dear friend last week.  She does not have MS.  She is 100% legit chronic illness free.  She will sometimes bitch for 5 minutes about her road rage because of slow/careless drivers, how she was late for work, or had to grocery shop, or played softball.  she makes me laugh like a fool.  then, its my turn to bitch.  and, we still relate.  I have no problems with illness free people bitching about stuff.  so why, oh why, do people with MS that have mobility drive me up the wall???

maybe it is because of who i am, and how i lived/live since diagnosis in 2000.  I never stopped until MS took my legs...then, I stopped for a year (in the throes of depression) and then, found a new mode of transportation and keep going.  No matter how small my life is.  I just really cannot understand how some people get diagnosed, and then they act as though life is over.  I admit, its scary. yes, i get that. but to quit your job??? ( when you are able to work??) to complain to fellow MSers about running your 15k???? (when they are crippled) 

ok, i am done with this. hopefully, i have some clarity in there....because i am not an asshole, well, not a TOTAL asshole, anyway.

Thursday, March 11, 2010 Carnival of MS Bloggers #57

Heidi is a BAMF,
Guest Blog at MSUnderstood

I had a moment the other day, sitting outside the post office, waiting for Glenn. I was doing what I have been doing for a couple of years now; observing. I am mesmerized, quite honestly, and watch others with full mobility just move. The simplistic way in which they walk in, just moving to get from here to there. Barely a thought in their minds. They want to run, they run. They want to jog, they jog. So on, so forth. And I sit here, watching them.

I am drawn to young and old…the young that lock their knees on cue just for the fun of ‘walking funny’. …the old, and their slow and steady shuffle….a couple of adolescent girls that clasp hands and run as fast as they can to the storefront….the teens that are skipping and stomping and kicking as they walk….

It is just surreal to me. Do you know, I honestly cannot remember what it even ‘feels’ like, to hop on one foot? I am unsure how I would even begin to physically do it. Apparently, the lack of ability has caused some sort of amnesia.

Still, fact is, I used to be able to do what they are all doing. I used to do it effortlessly, and with little thought about doing it.

Perhaps before I get into it, I should dish out my MS resume:

1. Cannot walk without assistance. That is just a way of saying I need a fucking arm or a wall in order to keep from falling on my face.
2. Knees and ankles that give out with absolutely zero notice. Keeps going up and down stairs really interesting….also adds fun when I am at the sink trying to brush my teeth.
3. Spasticity…..OMFG. I am forever stiff, have chronic pain and when my legs move to walk….I actually kind of resemble the Tin-Man from the wizard of Oz…sans oil.
4. Numbness. From the waist down. You know, I am not even going to go there. Use your imagination.
5. Weakness and fatigue. Well, I went an entire year of having an active diagnosis of major depressive disorder. MDD, for all of you DSM freaks.
6. Nystagmus…it has a ‘life of the party’ element to it…gather round, and watch my eye bounce.
7. Electric shock sensations, crawling bugs sensations….shit, a whole gamut of sensations that should be foreign to me. When my numb feet touch cold cement, they feel like they are burning. My demented, destroyed and dyslexic little nervous system. Etc, mostly etc.

Anyhoo, before this turns into a depressing heap of MS shit, I shall move forward. (moving forward….just makes me laugh)

Ok, so I have dogs…2 dachshunds and a GSD. My dachshund, Rocky, had a disc disease. An irreversible degenerative disc disease. His little vertebrae is basically mineralizing as we speak. He has been paralyzed twice, he recovered both times. Took him a while, but being a stubborn & fearless little badger hound, he did it.

Now, here is my thing: I am here, watching him. (This is when he was paralyzed.) No matter what, he kept going. He didn’t let it stop him. I had a cart made for him, which he hated….he would much rather drag his little legs behind him than have them dangle from the cart. If you met him once, you’d get that. He is a noble & stolid little thing. A whopping 28 lbs of hell. Ok, so he would drag his little lifeless legs through the tall grass after a bug, or if he heard an imaginary sound that would cause him to speed off in a direction barking his head off. He never stopped enjoying his life. He kept his passion. Yes, his dog lust for life.

And I know…he doesn’t have the brain capacity for insight, he isn’t contemplative…he just was spurred forth by pure animal instinct. I know all of that. I am also aware that even while he was dragging himself around over the grass in the yard, my other two dogs never once said ‘hey, rocky…are you disabled? Do you need help? “

They never even noticed. Because it didn’t matter.
If only that were the way for us dumb-ass humans, huh?

Nah. And before anyone allows themselves to read my words as purely negative, or to view me as a complete misanthrope…keep an open mind. I am a realist. And reality isn’t all sunshine beams shining out your ass. And just for the record, not everyone wants you to shoot sunshine beams up into their ass either. Sometimes they just want to bitch and be heard and be done with it. Just like any other (based on assumption) chronic illness, there isn’t going to be a ‘happy day’ every day. That said, there also isn’t going to be a negative day every day. (*except for the Pollyanna’s and the total assholes….they are either all of this or all of that)

My MS has done a lot for me. In so many ways. It has given me excuse slip after excuse slip. It has given me a pity card. It has lacquered me with a thick coat of guilt that I can’t seem to shake off me, no matter how hard I try. It has given me people that do not know how to act around me, or has caused them to sound like a moron because they don’t know what to say. It has caused them to be ironic, and apologetic, and I seem to inspire the inner-life coach in a lot of folks.

The ones that say,:
‘well, it could be worse’. yeah, no shit.
‘things will get better’….really?
‘you have to keep positive’….mmmmm, that is one of my favorites.
‘everything happens for a reason’. great. So, basically some divine providence has some serous fucking explaining to do. So I then ponder my life, trying to mull over the profundity of my ‘sins’.

Nah, it is just something for them to say. We hold onto sentiment, warm fuzzies make us feel better. A positive attitude doesn’t make me walk any better. In fact, I am not getting any better.

But, all of this makes me a negative asshole. Then, after my reality crashes into someone’s sunshine filled daydream, I am the one comforting them.

I am not negative. I laugh when I think shit is funny. I read, paint and play with my dog. I gossip with my sister and we bitch about life. I am a college student. I have been in a relationship with Glenn since the late 90’s. I am passionate about art and music. I have beliefs, and hopes and dreams.

And, I have MS.

some mental shit...

i know everyone is different, thank god, and i wanted to talk about the mental shit in regards to my MS.
when i first became disabled, i had a lot of issues coming to terms.  the whole gamut of stages to go through....the grief, the anger, blah blah blah...
but, in addition to mourning my mobility, i had a couple of new monkey wrenches thrown in due to sclerosis.
in 2009, i was diagnosed with major depression.  now, this was kind of a two parter.  i was indeed depressed because i could no longer walk, hop, skip, jump, balance, etc....but, i had also been explained by my neuro that i had lesions in an area of my brain which managed my emotions.  yay.
so, i was upset with that knowledge mainly because i was throwing a pity party and thinking, 'i can't even have my own depression? MS is a fucking dictator.  but, after a year, i got over it.  in that year I began chemotherapy. novantrone.  scary shit, for me anyway.  perhaps i dealt and came to terms a little? perhaps chemo lessened the inflammation and the depression waned?  maybe MS was a jealous little bitch and wanted to be the star of the show?  who knows.  depression took a hike, and anxiety reared its ugly ass head.  i hate anxiety...i actually hate it more than MS. what an awful, awful thing.  i was actually most likely predisposed for some epic anxiety. anxiety/panic disorders run rampant in my family.
my neuro prescribed me xanax, which is actually the only rx that i take on a daily/as needed basis.  my poor little amygdala kicks into overdrive and doesn't know when to call it quits until i slap it with a benzo.
my neuro also explained how it is actually quite common for newly disabled folks to develop anxiety issues.  i suppose in pat because we are programmed to survive, and since the all knowing brain knows i am crippled...it is in constant sentinel survival mode.  like, my sense of smell is amazing, my hearing is epic....it could be in my head, but i seem much more in tuned with my surroundings since i became a crippled gal.
MS definitely can deplete you of your dignity.  MS can act like a thief in the night...or, a thief of always....it can alter your thought process.
..which, can actually be for the better.  i don't like giving MS any positive credit, but i guess i have to.  i sheds a new life, offers insight, and you can most definitely get deep inside of your own head and unlocks potential that you might not of tapped into because you were busy being a mobile person and motoring your ass off.

*i am not crapping on mobility, because it is a dream of mine to be able to walk again....and drive...

but, mate...just maybe....it is because of MS that I paint, write, take courses, learned to knit (knit myself a badass hollie bobbie blanket)....those things....prior to disability, i didn't have time for.  or, i would have ever bothered with.  who knows. i suppose it all boils down to perspective.

First ever post....here goes

I have to admit I am not much of a blogger, obviously. I have though, for many years, frequented several blogs of many MSers. The thing I like about reading others thoughts in regards to MS, is that I can sometimes leave with something. I am either touched, challenged, engaged, enraged.....long story short of it, I feel. I have actually been encouraged by several people to start my own blog. I have been told that I would get a lot out of it....basically, I should blog the shit out of my life. While I am certainly not going to blog the shit out of my life, (I am a hard to get to know, private type person) I am certainly going to blog the shit out of my MS. I am going to bitch, and vent, and laugh, and cry....all via blog. I may like it. I have to be boldly right up front with you and say that a lot of people with MS piss me off. Granted, I am still dealing with a little anger at my situation, but I'll get to all of that eventually. I was diagnosed in 2000. I am one of those jerks that hates going to a doctor, and puts it off until I cannot anymore...so, it started with headaches, and mild fatigue. After a couple months of some seriously cranium splitting migraines, I started to ask my mom for some of her super ibuprofen. ( I don't like pharmaceuticals....) so, I dealt with the headaches, and the fatigue. I really didn't know why I was so exhausted. But, I kept working. About 50-60 hours a week. (self employed, yee haw) then, the headaches and the fatigue seemed to fade. I started noticing that my left lip and parts of the left side of my face had patchy numbness. Again, here is where I should have made an appointment, but alas, I am stupid/stubborn. The headaches returned and the numbness spread...and I began to sleep like a champ. Seriously, if there were any awards handed out for sleep, I would have taken home the blue ribbon. I just slept, and slept. And worked, and slept. I noticed I was getting dizzy, which would cause nausea. I made an appointment with a local GP.  I told her my symptoms, and she told me I wasn't drinking enough water.  I shit you not. So, I drank more water.  My head was pounding, and felt like a pressure cooker. My face and neck and thigh were numb on the left side....and I still didn't go to a doctor. What a dipshit. ( in hind site, I wonder if I had been proactive and seen a doctor at the earliest signs, if I wouldn't need my wheelchair now....) 1 st bit of unsolicited advice: if you think you have any MS symptoms, go to a doctor. I mean, if they are persistent. Don't be all hypochondria-cal and histrionic about your body. But seriously, if you are pushing on months of symptoms....go see someone. Cripes. Keep in mind, during all this time with these symptoms, I was continuing to work, play tennis, mountain climb, take my little brother and sister for long bike rides, borrow my moms dog and walk him on the nature trail, etc... I never stopped. ( here I am gonna enter a little word jumble touching on my above statement about how some people with MS piss me off. The REASON some people with MS piss me off is because I read their blogs and see them whine about MS ruining their lives, yet finish the sentence with them running a 25k the following week. Or hiking, or biking, or....whatever living mobility unassisted life they live. Please.) ...it angers me. Anyhow....continuing on, in addition to my marathon sleeping, skull numbing headaches, and numbness, I realized the dizziness was getting more aggressive. I would have to sit with my head between my knees, like bracing it firmly, as I felt the room whip around me. It would eventually subside, and I would be able to go about my day. Months pass with the above symptoms....then, the pants pissing. Like a toddler with a micro bladder, I kept peeing my pants. Not drenching them, mind you....but just enough. Ya know? Just enough to make you feel like total crap about yourself. At this point, my boyfriend and mother were trying to convince me to see a doctor....but I just thought I was prematurely in need of depends.  at this point one would assume i would make a beeline for the nearest doctor, and i actually did.  At the local hospital, where they obviously don't deal with much MS, i was seen, treated and released. their diagnosis? vertigo.  They gave me some anti nausea meds and sent me on my merry way.  Numbness, migraines, lack of bladder control, dizziness, and fatigue all summed up and fit nicely into a neat little vertigo box. voila! well,  it got worse, much worse.  one night, driving to work with my boyfriend, i almost killed us.  i had been having double vision for a week or so, and hadn't said anything to anyone about it.  mainly because i am not really the type to, and because i thought (with all of my medical knowledge. HA!) that it was somehow related to the omnipresent headaches i had been having.  at that point, my boyfriend forbade me to drive...cant say i blame him because i had nearly just killed us both, and he drove me home and asked me to call my mom so that she could take me to an ER.  I thought that he was being severe and a bit dramatic.  i should have been severe and dramatic, eh?  My mom took me to the ER...different hospital this time....i actually had gotten so bad that i couldn't stand straight up, my coordination was way off, all of my existing symptoms had staying power and kicked it up a notch. my pounding head...my loss of vision in my left eye....i sat on the examination table, in my 20s, and a somewhat attractive young doc came in...i proceeded, with no warning, to piss myself right there on the table in front of him. ugh. really.  A neurologist came in, gave me a mini evoked potentials test, asked me to walk, hop, etc.  i was bummed because of the whole peeing my johnnie....my mom was crying, and asking what the hell was wrong with her daughter....and then, there....there it was. my first time hearing to those words. multiple sclerosis.
maybe i had heard them before, i just didn't cement it in my head. i didn't have any reason to. but now.....the cement was out of my head, and ensconced my feet....i might have MS.
the neuro asked me if i wanted to stay overnight for observation, i declined the invite, but was firmly talked into staying. the overnight night stay turned into a week in hospital.  MRIs, spinal tap, 24 hour urine catch, blood work.  did i mention i was in a wheelchair?
i vaguely remember the 2nd or 3rd night, after everyone went home after visiting hours. I pulled myself out of my little uncomfortable hospital bed, and attempted to do some power squats, apparently thinking that would benefit me.  sometimes i blow myself away with how stupid i am.
the saga continues....so, i got the bona fide MS diagnosis with the MRI scan of my pea brain littered with white spots.  My blood count from the spinal tap joined the MRI. my urinalysis con fired i was pissing out B12 like it was water.  I had MS. and i was scared shitless.  sitting on my puny hospital bed, watching my family shuffle in and put flowers on the stupid roll table....*sigh. 
Those were the days.  the blissful ignorance of chronic illness...now, myopic.  so, i was immediately prepped for steroids.  they drilled a hole in my arm, and gave me a week of IV steroids....followed with an oral taper.  gross, dude.  nothing is worse than steroid mouth.  that taste, wicked.  while i was pretty determined to hate the steroids, i was amazed at the effects that they had. as though concocted by some great wizard, this solution coursing through my veins was putting the kibosh to all of the little nasty symptoms. the numbness subsided, i could stand up straight,  my vision returned in my left eye, my headache was gone like magic.  wow. fucking wow! I got discharged, with follow up appointments already on schedule.  i rode home with an armful of MS pamphlets, my new prescription for my newly diagnosed illness, and went to sleep.  there is just no sleeping in a hospital. not for me, anyway.  if you can sleep in a hospital, hallelujah.  more power to you, cos i can't.  once home, my routine slowly returned.  i admit, as badass as i sound, i was still scared.  until i educated myself on MS, i was even nervous about exercise.  I was ignorant enough to think exercise might cause another attack.  dumb dumb dumb dumb.  So, I took a home course in Multiple Sclerosis, and got my masters.  Having a hyper vigilant, paranoid immune system sucks.  But, hey, thems the breaks.  So, I resume my life.  I am back to working 50-60 hours a week, i hike, i take my bro and sis for long bike rides, play tennis, swim.....
did i mention i felt so awesomely normal that i cancelled my scheduled appointments?  I had gone to a couple...but i felt fine, and i was determined to avoid medicine and doctors.  so, i cancelled them.  That was 2000-2001.  Up until 2009, i continued to do just that...live my life.  MS was rarely mentioned, and at times, when symptoms relaxed, I would ponder the possibility that the diagnosis was wrong.  or, perhaps my RRMS kicked my ass that one time, but that was it. it was done.  since 2000, i have experienced tons of MS related shit that i never bitched about, never told anyone, never allowed to interfere with my life.  I had a lot of numbness, i was getting charley horses, crawling bug sensations, incontinence, headaches....i worked with a catheter in my arm, i just kept going.  Then, in 2009, MS delivered a crippling blow. literally.  
it had started back up with weird sleep, headaches, fatigue, numbness, burning sensation, le hermettes, weird coordination issues....so, MS reminded me of its residence in my brain....so, i called my neuro.  My NEW neuro, because my old neuro had refused to see me again dude to the fact that i had cancelled so many appointments with him. so, i go see my new neuro.  She puts me right on steroids, and starts me on beta seron.  the MS stuff kind of subsides....a little.  The side effects from beta seron sucked. yuck.  flu like symptoms, and to boot, I had another new attack after being on beta seron for a few months.  I got off beta seron.  finni.
My boyfriend and i had decided to open up a used high end clothing boutique.  In addition to our own business, I had been selling clothing online for years.  We discussed it, and decided to launch a brick and mortar store.  see how it did.  My sister worked with me.  She dealt with customer sales.  I am not what you would call a 'people person'.  I am shy, reserved, cynical, and very private.  My sister is like sunshine, unicorns, and fairy shit.  She excels in dealing with people, she enjoys it. So, she dealt with customer service, and i dealt with all of the paperwork and buying, the grunt work.  Months into the launch of the store, which we were please with the success of, I was driving to pick up my sister to go to the store.  I hadn't been sleeping very good that week, for whatever reason, and at a stoplight, i noticed my right leg was bouncing a little bit as i depressed the brake.  I apparently blew it off, handpicked up my sister.  I also noticed i was lacking the usual pep in my step.  my feet felt like they had weights on them. very heavy.  when walking up the stairs, i would get slower, and slower....i told my sister it felt like the stairs were made of marshmallow fluff, and that i was trying to get to the top, but it seemed like i couldn't do it.  My sister talked me into calling my neuro. another round of steroids later, and my body was going downhill fast. like a big, icy mean assed looking snowball hurled at your face.  I couldn't walk without holding onto something...someones are, a wall, etc.  I couldn't wear flip flops anymore, because my feet were so numb i couldn't feel the actual shoe and it would fall off/trip me.  I was pretty much numb from the waist down. The steroids weren't concocted by magical wizards this time. *snort
My lack of coordination was becoming a total bummer.  My fatigue was ridiculous.  Lack of balance.  I could NOT drive. Me!  me not drive? ridiculous.  But, true. Cant feel my feet, can't feel the pedals.  lack of coordination=not having the ability to operate the pedals. Nystagmus in my left eye,  shitty bouncing eye vision thing.  Incontinence was back.crawling bugs was back.  Spasticity was new. brand spanking new. i feel like a mexican jumping bean sometimes.  So, long story short. I could walk without assistance, i couldn't drive...so, i closed the store. MS killed that for me.  In hind site, I could have hired and worked it out...but, it is the way it is.  I can't change anything now.  So, in addition to losing my ability to drive, and walk unassisted, I also could not work alongside my boyfriend and help with our business.  
I suddenly needed a wheelchair to even get to my doctor visits. 


Ill end it here and get into some of my psychological, emotional stuff in a different post. this one is long.....go blog me.


My symptoms presently are:
nystagmus, spasticity, crawling bugs, le hermettes, ataxia, loss of coordination/balance, optic neuritis, numbness, burning sensations, incontinence...etc

This ....is me.