WHEELS UP…?

Yep. I have planned my first trip by airplane since 2008 when I went to China. I will be traveling to Boulder with Susan, John (who lived in Boulder for a time), Reclar (who once visited me there and had a good time), and Amy and Lewis. Amy and Lewis and I all met there while going to school in 1998. We've been close friends ever since and they are now married with children and live in Oregon. I visited them there in 2005 but haven't seen them since. It should be a blast! Travel will be a struggle but well worth it for this trip. I mentioned to Susan that it was going to be strange…like going to Amsterdam. She replied, " or like 'Fear and Loathing in Las Vegas'...". I hoped it would NOT degenerate into that but determined it was out of my hands at this point. We're not going until July but I'm so excited already that I can barely stand it. Two handicap accessible rooms already reserved, plane tickets next. So many options for entertainment and fun there that I can't decide what I want to do first…! Nederland, delicious beers and good food in Boulder, watching prairie dogs and people flying model airplanes at the mini airport at the Boulder Reservoir, Celestial Seasons factory, quick trip up to Rocky Mountain National Park, driving up Trail Ridge Road, CU museum, Dashanbe Tea House, tubing in Boulder Creek….Which will it be??? Did I mention that weed is legal in Colorado now? Yeah. So, Lord knows what we may get involved in...

FRIENDS…I'VE GOT SOME DAMN GOOD ONES

I wrote the following to Susa K:

The best thing about being me right now is I've reached the point in my life where I don't give a shit anymore. It is literally impossible to hurt my feelings or upset me. Doesn't mean I do or don't like you . I just don't care and I'm very happy. It's a good place to be. Had a fantastic visit with my dear old friend Stephen M today and that also makes me happy!

To which she responded:

I love you more and more everyday! You've "crossed the river". Welcome, Reverend.

5 hrs · Unlike · 1

EDEMA...

I am now wearing compression hose to treat edema in my legs and feet. Is anything else going to swell up because I'm in a wheelchair? Seems like my doctor should have mentioned this was going to happen since I now know it is common in people with mobility problems. Here's a good site about the issue:

http://www.sharecare.com/health/living-with-multiple-sclerosis/what-swollen-feet-ankles-ms

FOOD FOR THOUGHT...

Happy ‘Underpants Day,’ America!

By Trevis Gleason

Published Jul 2, 2014

“Happy Underpants Day, Chef!” How could I possibly forget the young lad (what was he, 3 or 4?) who greeted me at a Fourth of July barbecue a number of years back?

To this day, I cannot help but wish my countrymen “Happy Underpants Day!”

And yet, there is a pearl in the wisdom of that boy with a hot dog in one hand and red, white, and blue cake icing on his lips. Independence and underpants have a common theme for people with multiple sclerosis.

How many times haven’t I heard from people who don’t go out as much (or at all) because they feel nervous and tied to a toilet? If even a short walk away from the house can leave one damp with sweat and wet, home can become a prison.

Look in the back of just about every MS publication and you’ll see adverts for adult diapers and other incontinence protection. We all know that that thoseunspeakable MS bladder issues make us indivisible from our “urine-Nation.”

While some meds have helped me with urgency and frequency issues, pelvic floor exercises (yes, men do Kegels too!) have probably helped more.

Liners, pads, “protective undergarments” all help catch what might leak. Treatments like self-catheterization and injections of Botox into the bladdermight be required if the leaks become more than a dribble.

So, is it time to admit that some of us are letting the repressive symptoms of bladder or bowel incontinence keep us from engaging with the world around us? Are we letting the holiday parades, barbecues, and days at the beach be ‘taxed’ away from us without even casting a vote for our own independence?

I’ll sign my name to the Declaration of Underpants as big and as bold as John Hancock did to that famous parchment. We must each decide where we draw the line on what we’ll let MS take from us. I, for one, am not going to let “below the belt” MS symptoms keep me from the party!

So Happy Underpants Day, my friends! Now, somebody pass me a burger and a beer — there are fireworks to watch.

Wishing you and your family the best of health.

Cheers,

Trevis

ADDENDUM REGARDING CANNABIS...

While, I have seen improvements from a daily dose of cannabis, the dose is tiny. Generally not even enough to get high. If I could get the appropriate kind of legal medical marijuana, I could intake a lot more with no high and probably see a greater benefit. So, fingers still crossed for legal medical cannabis in Georgia in the near future!

OOPS...

I'm way overdue for a post. I'm doing quite well and moving around significantly better. Not walking or anything but better none the less. Also, the problem of constantly wetting my pants is completely gone. I don't know whether to attribute this to Tysabri or my daily dose of medical cannabis. It is probably a combination of the two. I recently went to visit my brother and sister in law, who are living in the same apt I lived in for 10 years. I had a great time, managed the large flight of stairs, and dear friends of mine brought us sushi for dinner. Mission accomplished and cheers to a significant and successful journey!

THE FINAL PIECE OF THE PUZZLE...

If you find yourself on my blog, please watch this video. It will likely change your thinking in a big way.

Thank you!

https://www.youtube.com/watch?v=Z3IMfIQ_K6U

NEVER THOUGHT I WOULD ACTUALLY EVER BE THIS OLD BUT...

I have actually lived long enough to see 5 things happen that I never thought would happen in my lifetime:

1. We have a black president in the US

2. There are female members at the Augusta National Golf Club

3. The new star of the remake of Annie is an adorable little black girl

4.Widespread acceptance of gay people

5. The legalization of Marijuana…this one is the real shocker and I'm very pleased.

Can't wait to see what the next 44 years has in store. 88 or bust!

WORTH ANOTHER TIME...

From 8/15/12: This was so good and so true that it is worth reposting 1.5 years later.

Posted on FB by my friend, Kristin F. Thank you for posting and all I can say is amen! Read this.
http://www.abc.net.au/news/2012-07-03/young-inspiration-porn/4107006

WELCOME to 2014!

Well, here we are almost half way through January. Life is good and here I am with a new hobby. Life gets boring when you don't work anymore. So, I have to have projects. My new one is to get medical marijuana in GA. I  know that 1) it sounds undoable and 2) that people are thinking "of course, she was always a huge pot head". And they would be correct. I was a ridiculously huge pot head for a few years there. But this is not about that. It is about me being able to acquire a substance that could actually help me treat my symptoms and potentially my disease since it provides protection from neurodegeneration. My disease shifted a few years ago from inflammatory to neurodegenerative. To simplify things, marijuana is made up of two parts; the THC cannabinoids, which get you high and the CBD cannabinoids, which do not. Marijuana "on the street" is bred to be potent. So, high THC….low CBDs. And wouldn't you know I need those stupid CBDs that don't even get you high! This will never be possible until we legalize pot. Even if I was willing to buy it illegally, it would have very low CBDs. So, it might help some but certainly not as much as it could. So, I need your help. If you live in the state of Georgia, please visit the website for the Ga Care Project and sign the petition. Also, please pass this on to other Georgians. There is hope. I know it…

HAPPY NEW YEAR!

A wise man and Atlanta artist summed up my thoughts for the year perfectly. Enjoy! 

- copyright 2013 Grant Henry

2013

I've won some.

I've lost some.

I've been scared to death.

I've fucked fear in the face.

I've shed some.

I've gained some.

I've stood rock solid.

I've waffled a lot.

I've laughed so hard I cried.

I've cried so so hard I laughed.

I've given.

I've received.

I've been so grateful that I've lost my breath.

I've been so selfish that you've lost yours.

I've saved.

I've spent more.

I've loved some and been loved more.

I've misunderstood and been misunderstood.

I've been divinely patient.

I've never been more impatient.

I've held on for dear life.

I've let go for dear life.

I've lost some heroes.

I've gained some heroes.

I've said no.

I've said yes.

THIS is life.

I Rejoice & I am Glad In It.

CHEERS!

Get drunk One should always be drunk. That's all that matters; that's our one imperative need. So as not to feel Time's horrible burden one which breaks your shoulders and bows you down, you must get drunk without cease. But with what? With wine, poetry, or virtue as you choose. But get drunk. And if, at some time, on steps of a palace, in the green grass of a ditch, in the bleak solitude of your room, you are waking and the drunkenness has already abated, ask the wind, the wave, the stars, the clock, all that which flees, all that which groans, all that which rolls, all that which sings, all that which speaks, ask them, what time it is; and the wind, the wave, the stars, the birds, and the clock, they will all reply: "It is time to get drunk! So that you may not be the martyred slaves of Time, get drunk, get drunk, and never pause for rest! With wine, poetry, or virtue, as you choose!" -Charles Baudelaire

IT'S CALLED AN EXACERBATION.

It is amazing how many people with MS refer to them as exasperations…It shocks me and causes me to make a face every time I read it. Learn it. Know it. Live it. Please.

exacerbation (usually uncountable, plural exacerbations)

Noun

1. An increase in the severity of something (such as a disease)

ex·as·per·a·tion

igˌzaspəˈrāSHən/

noun

1. 1.

   a feeling of intense irritation or annoyance.

   "she rolled her eyes in exasperation"

   synonyms:

   irritation, annoyance, vexation, anger, fury, rage,ill humor, crossness, testiness, tetchiness

TOO HOT…too cold.

I saw this on an MS site and it describes my experience with temperatures perfectly. It's a little frustrating…

I sometimes feel like Goldilocks and the Three Bears. The outside temperature is too hot and I become fatigued and tired or it's too cold and I become stiff and my muscle begin to seize, but then, there are a few times during the year when the temperature is not too cold and not too hot, it's just right! Unfortunately those times are too few.

IT'S OFFICIAL!

I'm old and odd. Now I've always been odd. I've just never been old before. Since I can't go out in the world and shop for myself, I use Amazon all the time. Now that I'm on a limited disability income I always have things shipped the slowest way possible and usually buy used items when possible. So in between purchasing something and getting it in the mail, I often forget what I order. Today, I was surprised to receive 4 separate items. The order included generic Pepcid Complete, Preparation H (the real stuff - not something you want to cheap out on), two horror movies starring Shelley Winters, and a documentary called Cross Burning in Willacoochee...and was really excited to get them all. 

Important update...

I was telling my dad @ sending D the following email:

"I was just thinking for the first time in my life I actually pay for all of my expenses with my disability income. Medical, prescriptions, beer and cigs, everything. Of course my life is much less expensive these days and I don't have to pay rent or have a car but still something to be proud of...:-) It's the little things that keep you going".

He touched his nipples and told me he was really appreciative of my complete self sufficiency because his teets were still raw from what R, H, and I had done to them over the years. I offered to buy him some udder cream for xmas with my disability money. He thanked me and told me he had been using the cheap kind and would continue it until then but that it didn't really help. Poor thing, he's probably been using samples. I don't think he had any idea he was going to have to nurse for that long. I didn't look at them but imagine they're still bleeding. 

All donations can be made to:

The Raw Nipple

I mean the: 

Raw Teet Foundation

Please contact me for the address.

Three Year slump...

I must be going through a three year slump. It makes me wonder if other people who are seriously ill go through a slump at this point. Three years ago this month, I began falling so much that it was becoming quickly noticeable that I would need a wheelchair in the very near future. I got my wheelchair in early October of 2010 and proudly sat in it with two sprained ankles. At least, I went down fighting.

So, now I guess it is becoming really obvious that this is how it is and that's not going to change. So, I asked my friend Susan K, the one who is a quadrapalegic after having a catastrophic stroke at 33, if she ever felt like she was frozen in time at the point where she got sick. She said, "yes. like life moved on and somehow I got left behind". I said "yep. me too". She said she loved me. You gotta love my crippled friend.

From Madea Goes to jail...

Brian to Joe and Madea:

"I'll tell you, when your parents get to be

a certain age, it's like raising children.
My kids don't give me trouble
like you and Madea are giving me."

MEDICARE, AND MUSIC, AND PARENTS, OH MY!

To be clear, my complaints from the last post are because I'm on medicare and nobody ever promised me a rose garden in that regard. Medicare is fine, BCBS who covers my medical is fine. It's only Cigna that covers prescriptions that is a nightmare to deal with. Of course, I haven't had to fight with Medicare or BCBS @ any coverage yet. At least I'm not on Medicaid, I'm sure that would be much worse. Also, I do have the money or at least access to it if I do have to pay for my meds. I do forget that MS has has foisted me prematurely into the old person realm. So, basically I'm dealing with the same problems that most if not all elderly people deal with. Oh well, it really could be worse even though some times it doesn't feel like it.

My second concern is that I'm reacting to some things like an old person. Yipes! First of all My next door neighbor's son has taken up residence in the garage apartment that is next to my "sitting area outside"/bedroom. He is in a band and plays the drums. At first, I liked it. Now it seems too loud. Considering how many people I must have blasted out over the years with my music, it is absurd that I would let that bother me.

Lastly, now it bothers me if I think my parents are drunk which they vigorously deny if I mention it the next day which makes me even more annoyed. I guess the role reversal is complete and it's not like I don't drink...

Any way I guess those concerns are my version of lions, and tigers and bears, Oh My! and don't ask me to explain it...;-)

HEALTH CARE

Ok. My dad has been telling me this for years but I NEVER believed him. Healthcare is screwed. I can't believe I'm having this much trouble getting my insurance to pay for the medicine I need that keeps me from wetting my pants. Cigna is so bad that I can't even talk @ it. My insurance won't even argue with my Doctor until I try 2 other drugs. I tried one today and it makes me so dehydrated that I can't function. I had to take a lasix to make me pee. I threw it away even though I know they are going to insist I take it for a month. Then the process starts over again. To make it worse, doctors no longer get many samples. If my doctor wasn't a family friend they wouldn't even try to fight it on my behalf. I was told they had to stop doing that because they don't have enough people there to do that. I already know the final outcome will be denial. Then I'll have to pay $200 or so if I want to have it. Dear God...Things in health care are horrible now. I feel like a European...

RICHARD COHEN

What issues should patients keep in mind when going public with multiple sclerosis?

A problem for [new] patients is they’re put in the position of making everyone else feel better about their diagnosis. They don’t have time to work through all of their issues. -



-Mr. Cohen is definitely right about that. If you don't do that you are perceived as a bummer by many. I suppose that is understandable. Naturally, nobody likes a bummer...

WHEN A FRIEND DIES...

I just found out a friend of mine died. Hell they buried her yesterday and I didn't even know. She is the the one I referenced to in my post regarding my job that wanted to commute with me to work and I blew her off because I was pooping in my pants at the time and didn't want any one to know. She had a blood clot inher lung and she and her partner were raising two fraternal twins together. It's so tragic I almost can't bear it. So, so sad!

CORRECTION AND A LITTLE SOMETHING TO LIGHTEN THE MOOD...

When I had my toilet seat and lid falling off with me me on it disaster, my Mother said. "at least you didn't try to finger paint with it". I told my friend Jane about this situation and she sent me the following email.:

"Arghhhhhhhhhhhhhhhhhhh.  I do take for granted a fall-free poop.  Crazy. I hope you are writing a book.

You know that line in movies:  "Could be worse....could be raining?"
(followed by the inevitable crack of thunder)....  in the Hudson household
it would be "Could be worse....could have fingerpainted"..."

I followed up later with an email telling her all was well and that my biggest problem currently was having to tell my father over and over, "the modem is black the router is white". She sent me the following email:

"Hah! Like me right now in car having to tell mom twice on way home
from hottest longest day in history at sea world) that I don't need
her fla map she's searching for b/c it's all on my phone:)"

....only twice huh? you're lucky.... 

PRESSURE SORES?

I never saw this one coming but I'm actually starting to develop pressure sores on my heels. They've been bothering me and getting worse for months. And lo and behold, as mobile and non bedridden as I am, I am developing pressure sores. My dad says it is from moving my wheelchair with my feet, causing "trauma" to my heels. The same thing happened to my friend Susan. An easy fix suggested by both is to elevate my calfs and dangle my feet while in the bed. And to think I thought I was crazy when it finally occurred to me yesterday that bed sores might be the problem. Well, as they say, when it rains it pours...

FATIGUE...

I am doing very well and had a ver positive appointment with my neurologist on Friday...but, my god, what an incredibly exhausting couple of weeks. I will try very hard to make this as brief as possible. First of all,  I fell off  the toilet while going number two, my mother had to clean me up and my parents had to both pick me up off of the floor. My  uncle died and while parents were at his memorial service I clogged up the toilet and it took me three hours to fix.  Didn't want to leave it for my mom considering the circumstances. I feel like I am forgetting one other thing but honestly I'm almost too tired to type. I can barely think straight. Plus it is once again INCREDIBLY hot and humid. What part of someone with progressive MS having bone crushing fatigue do people not understand? No one gets it. No one...Hopefully something more positive next time around...ALSO, IF ONE MORE PERSON SAYS TO ME THAT THEY ARE TIRED TOO, there may be bloodshed.