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250084 tn?1303311035

Paying the tx piper


  Well, it's Saturday and once again, I learned if you 'play' at all on tx, you pay big,lol!
I have felt pretty decent this past week (compared to!) and 'played' a lot....did work, went 'out' in the world, out to eat, did a lot of 'chores' and than STUPIDLY....went out on the bike last night! Left at 9:00, was 47 degree's in Fl., (windchill on a bike @ 30?) and rode 2 hours! Had all the warm attire on , still froze tho! Stopped at a local hang out (had my bottled water!) while all said 'you look great', (lie well!) and one cried as I haven't returned her 10 calls (my bad! Just not much on the phone right now, you can say 'duh, where was I ' and take all the time you need when writing:} , but now she's bringing me good food, ol' style cooking food :} , and ENJOYED feeling/acting , somewhat, 'normal' for a few days. And how funny drunk people are when your not, lol!
   Forward to this AM.......OMIGOD , I can't walk, LOL! The 'semi' came back over me twice!! And it just hit me, DUH! .......shivering thru out every muscle for a couple hours is BAD for already sore, painful muscles! I need a d*m walker today,lol!
Oh well, decided that I better do the total lazy couple days thing. All I am doing today is going to Norma's :}, getting a 'boost' from them, and going back to sitting on my arse all day. Maybe can finally catch up on all the post.
  While paying the tx piper it's 'dues'........it was all still fun and worth it, so nah, nah, nah Riba and Peg!!

  Have a good Saturday all!

LL
26 Responses
86075 tn?1238118691
it boggles my mind that you can ride a big bike at all, let alone on treatment! I can write a smaller bike, a honda 750 or so, lol...but when I tried to ride my brother's Harley the handle bars went flying out of my hands, and I went flying backwards landing on my rump! Wasn't used to that kind of power! Course, when my brother came running over, he went over to see if if his bike was okay since I dumped it, lol...lol....THEN he came over to me...!

I'm glad you had some fun, and I know, it's awfully hard to gauge yourself sometimes, you just want your normal life back...I find that when I do too much exercise I pay for it big time too...it's like I only have so many checks to cash, and that's it...and I better listen to my body or all he)) breaks loose!

I know what you mean about being around people who are drunk, though I rarely have the privilege anymore....I especially love it when they keep repeating the same unfunny story to begin with, while little bits of spittle go flying around your face, sometimes with a direct hit...that's always a load of laughs...no wonder they don't trust anyone that's not drinking, they figure if I'm in a sandbox acting like a tard, everyone else better be acting like one too! lol......have a great weekend, youre so lucky to be around horses, I told that to Mickymoe too!
250084 tn?1303311035
LMAO....to your whole post!

"Course, when my brother came running over, he went over to see if if his bike was okay since I dumped it, lol...lol....THEN he came over to me...!".................

That would be a Harley owner, lol. When someone aske to ride mine (not!) I say 'oh h*ll no" and just occured to me it's cause of they'll hurt my bike, not themsleves,lol!
I should NOT be riding, really! Didn't for 1st...13 weeks?....and one day HAD to get OUT! The bad thing was.... I found that while my legs throbbed to walk...I could 'roll' easily :}!! I sort of time the lights so I don't have to stop,lol!  Most days I don't, on that rare feeling 'okay' day, not too foggy, I chance it, but only when no ones here to stop me! I sneak out!

...I find that when I do too much exercise I pay for it big time too...it's like I only have so many checks to cash,.......

That was my past 2 yrs.also before dx and tx . Kept blaming it on getting older, till one day I said " I can NOT have 'aged' this fast"! in 2 yrs.! Which led me to finally getting dx'd with this disease! Good thing is , me and Missy's good Dr. say's I should feel like a million bucks when I am 'cured' :}....which always leaves me wondering...what DOES a million bucks feel like :}?

LMAO on the being sober with drunk people part :} Soooo funny. I see people I've talked to, socially, and realize.....your a real idiot over all, lol! Had one old friend, known 30 years, telling me he finally went to re-hab for his abuse-heavy abuse- of pill's and is clean now, as he was fall over drunk! I said "you swear your off pill's?", he said "yeah! Now I drink!" LOL. Made sure he wasn't driving and left! And I promise you as many times as I repeated to him what I have, he will not remember today!

Is it hep symptoms that keep you 'not out there'?  REALLY hoping you get tx done and behind you and life can get back to 'normal'. I know your in the 'pre tx' concerns, worries stage. That alone plays on your mind. I think your ready tho :} It was such a good feeling to be started in it, that pre tx stage over. You GOTTA get SVR! You will!

Well, have to go thru these cocktail napkins with #'s on them :} D*m.... who the h*ll is Bill?? And I was sober !! LOL!

LL
Avatar universal
GREAT that you got out, even though you're paying today. I bet it was worth it.  Every so often I need to feel "normal" however temporarily, even though I know it will kick my butt down the road.  I'm going out for Mardi Gras, even tho I know Wednesday is likely to really suck.   My sweetie will drive me (Hate that I can't do that except around town but I really am a menace behind the wheel) and we'll go to City Island and have great seafood and people watch and laugh at the drunks.  

I think I would go crazy if I didn't - I've just GOTTA go out and act like a person (not just a patient) once in a while.  48 weeks is sooooo long!  So I'm outta here, for an evening anyhow, fully prepared to be punished for it later.  

Power to the scrawny, balding, pasty-faced, irritable people!!!  Lese le bontemps rollon (or hawever ya spell that)!!!
86075 tn?1238118691
yeah, I'm just waiting on my NP...she's supposed to call me any day and then I go over there and she shows me how to shoot, but I think I already got it with that video...I don't know what's taking so long, I think she's busy with other customers, God knows, but I don't want to get in her face so soon in the proceedings, hope this isn't what she's like all the time, cause I can't for the life of me figure what is the hold up....I might go to Hawaii or something if she says it's another week or so....

yeah, I don't mind if someone is a little high, and fun...but someone who is drunk? YUK!!!!! especially when they are so drunk that the booze is coming through their pores with that booze, B.O. SWEAT, ammonia kind of smell? mixed with cologne? eeeeEIUUUOOOOO!
394687 tn?1290924440
Sorry I've been outta touch - boy did you hit the needle on the head about overdoing it. My hubby was out of town on business the last 4 days and  I took on my 3 horses and a B-party for my Bro (which in my energizer bunny days woiuld of been a cinch). But I feel like a Harley ran me over and squeeshed my guts all over the road. My RA is flared to the point that I can't even walk, the fatigue is extreme, headaches unbearable...and the list goes on. And I'm not even on tx yet - ugh!

All i can say is when you guys told me I'd have to pace myself - I had no idea how important it really was until I continue to pay the price. I hate feeling this way...just need to learn how to slow down. Anyone want to come help me muck stalls and ride horses? :-)

I hope to get bumped up on the the list to see my super doc at UCI Med Center and get the show on the road - after all forseegood and I need to do this together.

Mikki
250084 tn?1303311035
jd, hey! I thought you hadn't started tx yet!? I'm lost again?? Fill me in on that??
Yep, as much as being a bit reclusive is a needed in tx, so is getting OUT at times! It;ll just hit me....I GOTTA GET OUT NOW!! :}
And ohhhh how you pay!

Mikki, Child..... I am still paying! 3 days later! I know it was the shivering, with the muscles already all messed up (and don't even have RA, so they say??) I am still walking like I had a 'good' time,lol (really good time, wink, wink! NOT!)

.......Anyone want to come help me muck stalls and ride horses? :-) ..............
where ya' live? I have 'people' for that :}

LL
250084 tn?1303311035
Okay!! I get so frustrated when I hear you, Trish, Charm, others say "their so busy" I just want to scream! IMO it shouldn't be that way! I've asked to talk to my Dr. when him and NP had a major conference call in 10 minutes (he's head of research also) and he still talked to me 1st, and wasn't a Dr. day. He does go 'in and out' at times, but if I have a question, he stops and answers, listens. And he IS a 'big guy'!
Let's say.... we have 40 horse's going on the plane.......all scared, nervous. We are 'too busy' to give them all a shot/sedative so we skip a couple, don't take time for each one......one we skip goes crazy on take off, gets leg hung on gate or hurts one next to him.....is it 'okay' we were too busy to skip him? NO! It's our JOB!
We're talking people here! And often, once you do 'get testy' with them, they figure out your not going to take being overlooked, slacked on. I'm off on a tangent, but that just aggravates the h*ll out of me! This isn't a flu and antibiotics, it's serious and they ALL make a LOT of money doing what they do. At the very least they should answer questions!

  okay, Im done now :}

.......especially when they are so drunk that the booze is coming through their pores with that booze, B.O. SWEAT, ammonia kind of smell? mixed with cologne? eeeeEIUUUOOOOO! .............
Ya' just made me nauseas,lol! And killed any chance of my sex drive coming back on my last 5 weeks tx :}
(couldn't handle that even when I was drinking too!)

LL
Avatar universal
I'm treating - in week 22 of 48.  Just got labs back and have to go back on the procrit.  Still gonna go out tomorrow, though, and sleep in Wednsday if I need to.  I'm really feeling like $hit these days, havent left the house more than 6 times since New Years.

Thursday we leave for Mexico for a couple of weeks, I was hoping to dive but I can't now because of the procrit.  PHOOEY!!!  Its meant to be some of the best scuba diving in the world.  Oh well, I'll get some rest and float in the pool, maybe go whale watching too.

jd
250084 tn?1303311035
........havent left the house more than 6 times since New Years............

I had @ 4-5 weeks I never left here! Or bed,lol!
Mexico on tx.....now that's brave! But how nice for a break! Cept the can't scuba dive thing! I used to snorkle a lot, loved it and never did scuba dive...YET :}
Don't drink the water :}

Don't know why I thought you were about to start? Confusing with another, I guess.
You were UND ?? When?

LL
Avatar universal
UND since week 4!!!  That was the first PCR we did.

Diving is great - you'll love it.

Just came from doctor, she gave me something called Flora-Q, a "unique blend of probiotic strains" to take to Mexico.  And I still have a bunch of Lomotil (to slow down the GI tract) from my colon cancer tx days, so I'm hoping not to become the amazing $hitting machine whilst in Mexico.  Any advice on that score greatly appreciated.

jd
Avatar universal
I love this string!  it is so normal sounding!

I try and get out and do something light weight or what ever!  I may pay for it physically,  but mentally is so good for me! Fresh air!    

I get so tired of feeling like a hermit and tired.  Even when I pay for it ohysically, the mental boost it gives me Rocks!

Last week it was sunny,  I decided to go grocery shopping, (ok maybe not as fun as biking or riding)  it is a 45 minute drive down the mountain to store.  I haven't been since before Christmas maybe even th
Thanksgiving!  I send hubby or run into pricey store,

So far all is ok, sun is out, I got the new Eagles CD jammin, I am like  yeah ROAD TRIP!

Get to store,  pushing trolly, get to the can good area, starts getting harder to push, but hey I am gonna do this!

By the time I am done with laundry detergent , boxes of kitty litter and to the dairy area, I am no longer pushing the trolly, but  pulling it! Like a mule and my wagon!  

Then there is emptying all those things to the check out, and THEN the ride home, aww rest! Till I pull in garage and realize, I have to unload all this shoping and put it away!

But as tough as it was, I felt this sense of accomplishment till,  and kind of proud of myself!

Till the next day, and I thought, why the heck can the cat not go outside? Why  couldn't hubby pick up the laundry deteregent! :)).

It was worth it for the 4 bottle of Gold Bond though!

Deb
206807 tn?1331939784
LL,
I over did it a little my self-but nowhere near to your extreme. I wanted to spend some father and Son time this weekend. I figured since I do my shots on Friday and lay up all weekend, we would go to the camp and I would stay at the camp and lay up in one of the bunks while he hunted and we would do our bonding thing between hunts. I must have forgot that our bunks are nothing but a wood frame, topped with plywood, with a thin mattress on top. Our camp in just a damp, Jed Clampett, shack in the woods. By Sunday morning we both agreed, I needed to get back to civilization fast.

LL-4c
Once there were about 8 of us coming back from a road trip and got caught in on the worst rainstorms known to man. L.L. you know the kind that you have to put one hand over your face, not so much because of stinging rain as is it you trying to keep from drowning (one of the disadvantages of not wanting a windshield). What made this worse was, we were on  back woods Mississippi roads (No where to pull over without dying). We finally made it to the interstate and got under the overpass All the bikes couldn’t fit so as one brother was getting off his bike, he lost his footing in the mud, dropped his bike, and he rolled down about an 8’ ditch. We all ran over to his bike and stood it up while he crawled out of ditch. He sarcastically thanked us for not helping him out of the ditch. The response was hey, we are already soaked there is no since in us all being muddy to.
173975 tn?1216261375
I'm on week 61 and i haven't been outta the house in 3 days.  During the past months, I have had maybe a dozen decent outings; a nice restaurant, a little exploring the new area, and I was always so glad for the change in scenery even if i did feel like cr@p for days afterward.  I agree.  Ya gotta remind yourself of what 'normal' life is so you have motivation to finish TX and hopefully get back to strength and health.

Last week, before the ab explosion, i even went to a movie for the first time since last January.  Atonement.  i was sniffing and boo-hooing through the whole thing.  Didn't feel too good the next day but at least I had something new to think about.

RGlass - that hunting shack sounds something like my 'cottage'.  *LOL*

4C - I didn't KNOW you're starting TX soon!!!!!!  Keep us posted.

JD, enjoy Mexico but take it easy!  For real.  And don't spend too much time in the sun.  These meds make you super-sensitive.

Deb,

Sounds like some of my grocery expeditions.  Did ya get to the almost passing out part?  A friend who treated and is now SVR usedta tell me about the times she'd be so weak she'd just sit down in the middle of the store if the check-out line was too long.

wyn
wyn
250084 tn?1303311035
......we were on  back woods Mississippi roads (No where to pull over without dying).............
LMAO! LMAO!!! Dunnit that just suck,LOL!

(I am sicker than a woman pregnant with quads today and ya' made me laugh, bent over holding stomach!)

Yep! ....riding ALONE thru bad part of town.....starts down pouring! Oh sheeet! Trying to see, NOT slide, get to a safe spot and go to downshift and the freaking thing is GONE! Trying to go fast enough not to get mugged, slow enough not to slide and 'shift' a flat piece of metal with a wet boot !!  Made it to a so-so place, ran inside with cashier! Made a paperclip thingy, attached to metal (worked!) than when rain slowed ran to home depot and bought a bolt and screw to get home! Now I always tighten that thing up, check it!
Oh, and I have the weather channel in my cell phone!

P.S. I'm a chick, got a windshield on this one and still look 'cool' :}

P.S.S. ..........We all ran over to his bike and stood it up while he crawled out of ditch.....

I'm a chick :} The guys run over to me before the bike :}
God, it must suck to be a man, LMAO!

LL
250084 tn?1303311035
jd....can't help ya' with any tips on that one?? Eat a lot of cheese??:}

all.....funny isn't it, that trip to the grocery store, camp out, day out......is like a 20 hr. day of hard labor, with stress, on your body! @ week 8, when your getting to 'know' this tx :}..., I went to Publix (4 blocks away! Think I'd left here once in weeks!) and nearly left groceries there and had to leave! I was soooo determined to finish shopping! All while trying to still look like "I'm good, I'm okay, I'm cool"! I finally told a regular cashier one day...."I'm not a crack head, I'm on chemo" as I sure have looked like that a few times in there! Than, as you said...I pull up and no one is here to help:{
Fridge stuff came in, the rest sat there!

And how we get pleasure out of little things now,LOL. Like when I made it to the FL. camp out...had been 'down' for DAYS. My sis was LHAO as I kept joking...." A social, I'm going to a social! I'm going OUT". Or a WHOLE day UP. Now those are real whoo hooo days!  " I did laundry, cleaned the house, went for groceries and showered today". We're so thrilled,lol!

For today.....well I did shower !! :}

LL
Avatar universal
One of my old friends used to write about her "energy savings account"

She knew that she only had so many bits of energy and so she was very careful how she spent them.  She was really wiped out on TX the whole time and had a few little emergencies along the way too.  In spite of it all.....she SVR'ed.  

Mah momma used to say "that TX is lahk a box of chocolates; ya never know just what your gonna get."  ( OK...... my mother actually didn't ever say that)  

And you NEVER know just what you are going to get (unless you play.......cause then you are SO going to PAY!!!!)  But not for much longer.

By the way.......my old friend....... also had her little chair that she had in her shower......cause she didn't/couldn't even stand for very long.  That always stuck in my mind as being kind of emblematic of just how hard TX can be......

Hang in there, the finish line is just ahead.

Willy
250084 tn?1303311035
.............."energy savings account" ......................

That's a good one :} Unfortunatly it's looking about the same as my savings account after not working for 15 weeks now :{



.........By the way.......my old friend....... also had her little chair that she had in her shower......

NOW ya' tell me about the chair! Been hanging on to the towel rack for 15 weeks!!
J/K!

......But not for much longer..............
Thats right :} No. 20 tomorrow and count down!  :}  :}  :}

LL
206807 tn?1331939784
Unfortunatly it's looking about the same as my savings account

I refuse to look at my Balance. With the Bills I have and now the unexpected, extremely high, Co-Pay; I know sooner or later it may run out. So, I figure, why torment myself. If it runs out, it runs out and there is nothing I can do to stop it. I will take out a loan to cover me for the remaining tx, and re-group when it is all over. My son told me this weekend (he rides HD also), “Pops, when this is all over with, why don’t you pack your scooter and take about a 2 week road trip, no plans, just crank it up and go.” So, if I have to take out a loan, it will be a little more than for just getting me through tx.
Avatar universal
Maybe you should take a couple of weeks recovery time before packing up your scooter. It might take a while before you start feeling right again. Mike
Avatar universal
All we can do I guess is throw our hands up and laugh!  

Wyn yes, the God please don't let me faint in front of everyone!   Love the idea of energy saving account!

The shower,  once I find the energy to get in, I will stand there, have this conversation with self.  " I want HOT water, No it is bad for your skin, you will itch! But my bones hurt,  so take another tylnol,  Then the shampoo drama, which one? The one that smells pretty? Or the one that is suppose to help my scalp.

Jd, maybe you can  pretend to to scuba in a giant tub? Throw some shells in? I just bought some blow up fish for a mermaid 6 year old party! I can send them to you! :))

Deb
Avatar universal
Great idea, I'll try that!  Right after I throw my hands up and laugh!!!  Bring on the inflatable fish.

BTW, my husband is ex-Air Force (academy grad, then tanker pilot in se asia in early '70s) and I'm a former army brat.  I sit with Air Force at the Army-AF game (live near West Point) but still feel a bit like a turncoat!

jd
362971 tn?1201990634
I read in the paper a few years back that if you want to prevent "Montezuma's revenge" you eat yogurt 2 times a day for 2 weeks before going away.

Have fun
Bobby
Avatar universal
LOL, Don't say go Green!  I say go Blue!  Hubby retired after 30 last year, Air Force I still miss it sometimes!  Miss the community, the travel and seeing new things. Your hubby flew during a tough period.  

I ll send on the fish! and through in some conch shells too!  

Deb
Avatar universal
Bobby - thanks, that's great news, I eat yogurt usually twice a day already so I should be all set!  Really looking forward to it.

Deb - GO BLUE!!!  Great team this year, no?

jd
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