HBG and travelin on...open thread

HBG is holding pretty steady, down from 11.8 a month ago to 11.6 now... RBC are 3.6.  Trip to alb (2000 feet higher elevation) was uneventful... thank goodness!! My son keeps telling me it shouldn't be the anemia at those levels, but I can't imagine what else!!  He said they have walk ins to ER with HBG at 6, that immediately get a transfusion, but my gads, I'd be dead!! Wanted to thank everyone for the support..it does help any and all to know everyone is in the same boat.... I picture one of those cuban refugee boats.......... its not a fun place, but its our place...

[cuteus]

ANEMIA affects different people differently, some might function ok at 11 while others look like death and act like it!  I am so sorry you have to suffer through it!

[dyce]

Ha f.doc , good, the hmg is holdin. Diff. strokes fer diff. folk I guess when it comes ta this anemia.When I was coming thru. tx every drop I would feel but I'd recover but when it started yo yo'in in the 9 bracket it's hard ta do alot of phsical work and that goes with the brain work as well. Me ears are ringin like a irish tenor.

    Losin 30 pds. and still doin me 1200 riba a day keeps the anemia train a rollin.

    Glad yur trip was safe and yur still rockin fish!! I just did shot 26 so here we go agiannn!!!! Ya Hooo!!!

[jmjm530]

Did you start taking Procrit yet? Hope you feel better soon.

-- Jim

[amommy]

glad to hear you held up ok at the high elevation.  I take it you live in NM? I never picked up on that before.  Hubby's family lives in the land of aliens.  I don't mind albuquerque or Santa Fe but I could live without the visits to Roswell.  HAHA.  Hope you are doing well!!!! :)

[dyce]

Ha jim , I posted ta ya down on the video thread. Ya I started 40,000 u/ml procrit yesterday.

[Dale_Ray]

Dyce man!
Can you believe I have 8 shots left. Seems like you have shadow me in most aspects of this treatment. I know when I don't see you smiling name for a few days that you are really feeling the affects. I am the same way. Just think in a short time I can start telling you how great it is on the other side of the storm. Gotta be some sunshine. Beamer is hopping along at our pace to. I think he is building log houses nude now and rewatching the same movies because he doesn't remember he saw it last night. My family has a new rule about talking to me. If he has had the ambien he probably won't remember anyway! I hope you have a wonderful weekend.  Dale

[dyce]

Great is the no. 8, LOL remember sesame st. dale. Don't mind the dyce bro. me in the 48th childhood. Sx's are doin it again dude,I've been watchin bonanza an gunsmoke everyday tryin ta keep up with hoss an matt LOL. It's alittle late , ha!

  Ya beam in the same boat as us, wonder how he's keepin them log splinters outta his a--.

[OnAPrettyPoison]

Hello all!  Glad everyone is hanging in there.  I sure don't miss  the anemia - I have been feeling really good, and you all will again soon!

[friole]

Well, your son is beginning to sound like all the other doctors -- couldn't be the anemia -- bla bla bla.  Yes it is - especially when yours started at what - 15 or 16?  That is a heck of a drop.

Can you believe ammomy -- doesn't like the land of aliens?  Heck we went to family reunions in Roswell every other year for 25 years and I have a fondness for the place -- amommy - we aren't related are we????

small world (I am in Midland - ammommy)
frijole

[dyce]

Ha friole, hows yur tx free life a goin today?

[sfbaygirl]

I posted this below to you both in response to Friole talking about shuffling with anemia.

Yep, we call this the Riba Shuffle around here. Good rules for traveling....

Ya just put both feet on the floor and DO NOT lift feet off the floor as you move forward. You might fall. Be sure to hang on to your walker, cane or what ever object is reachable to steady you (Strangers will do). Sit in your walker every 10 feet or so to catch your breath. Put tan makeup on so you don't scare those passerby's. Make sure you comb what hair you have so the looney tunes truck doesn't come to pick you up. Use duct tape (clear) so your mouth doesn't gape open and pant. Be sure you remember to wear matching clothes and shoes, so not to call attention to yourself. Try not to slurr or drool, you may slip on your drool. Drive as close to wherever you are going, it will prevent passing out. Catch rides with those little golf carts as often as possible.

Any additions welcome!

PS
I get my aranesp at 11+, I learned the above shuffle rules when I was above 11. I think you need some procrit

Signed,
A panting, drooling, out of style, spiked hair, hitchhiking shuffler.

[dyce]

Thats funny, how is the arnesp workin for ya?

[goldyn]

My doctor let me ride on 11 for over 3mths, when it finally dropped to 10.8 , and i told him iwas gasping like a fish out of water walking through wal mart, he made me show him how i was gasping  so i added a little drama and opened and closed my mouth adding a little gasp suction action, and then he got all nervouse and looked at my eyes , and told me i needed to be on procrit as soon as possible, I did my 3rd shot and im already feeling sooo much better, but i tell you what those 3 months riding 11 kicked my but, and it was truly making me more ill, there is such a difference now that ive been on procrit, im the kinda girl who needs some big  time oxygen....

[fishdoc]

At your age your should know women are great at faking it!!!  I sat all afternoon in the meeting, looking wise (at least that was what I was trying to do!!), made ONE good POINT  just so no one thought I was shirking.... and went home!!!  Its the dudes with saws and hammers that impress me.  Speaking of nude carpentry... can I watch???

[dyce]

No, just strted procrit yesterday, so it'll be awhile I figure. So riba marchin we go!!!

[sfbaygirl]

I'm with you! I don't think I would have made it to 10! The traveling story was me at 11. I am gasping at 12! I guess I sure wouldn't make a good fish.

That is so funny the act you put on for the dr. although it probably wasn't an act. Yesterday after I had just woke up from a nap, I had to go to the shrink. John took me cuz' I wasn't to alert. The shrink noticed and asked why I needed a driver. I went for new AD's and anti anxiety meds. I left with Lunesta and Provigil to keep me alert during the day. I guess those shows help, huh?

[Kalio1]

I can't believe he had you do a dramatic rendition! Geez, now we have to excel at performance art to get the drugs we need? What's next a little soft shoe? You'd think they'd just believe ya! Hope you are hanging in there and feeling better.
My doc (when I was at hgb 10 it's 12 now) says, "oh, you will be ok, you are a tough gal" Im like... hey! thanks a lot doc! I guess quality of life doesn't apply, eh? He says every time it falls again.."give it a few days" and sure enough, it goes up. I see all of you guys getting Procrit and on many days I am jealous! lol My have my wants fallen to a new low!

Today has been a good one for me, yeah! I was able to do regular household chores, made phone calls ;) and didn't get out of breath talking, have dinner reservations (woohoo) and am going kayaking down at the beach as soon as Hubby gets here. I could really get used to this kind of a day. If treatment was like this, it would be a breeze! Maybe I have finally hit that levelling out place many say happens. I know NYGirl had a turning point, maybe this is mine.

[sfbaygirl]

No that's Riba Shufflin'. Bet we could make a song. How are you feeling? Back to work yet?

[sfbaygirl]

Kayaking??? I'm impressed! I felt so good on my Provigil I put a clean system in one of my old macs and am off to the apple store for a new Office since my last helper lost all my software..Grrrr

I thought I was losing my mind the other day, now at least I feel only semi brain dead.

I don't know how you do it with a 10 Hgb, at least it goes up.

[52TELE]

dale , I think your actually getting funnier as you near the end.
You crack me up.

[goldyn]

Ive told hundreds of storys to classrooms full of 2and 3 yr olds, so I really know how to use facial expressions and sounds to get my point across, i guess it worked good this time, besides that, I was raised by the ultimate drama queen my momma.....

Your right baygirl if you go in lookin like you dont need any help thats probably what your going to get the doc thinks well your still lookin good, let em see the real you and just what your going  through and needing a ride tells her right then somethings out of wak... good for you....

[goldyn]

Sounds like a crazy fun day and you sound great, i hope you have hit that levelling off place,and dinner resevations to boot , enjoy enjoy enjoy!!!!

[sfbaygirl]

Where's Dale?

[fishdoc]

glad everyones still kickin... even if its richard simmons type kicks!!

amommy... sorry born and raised in roshole NM....its not so bad... its a dry heat... my @ss!!!!

dale and dyce.... I'm glad yall are leading the pack.. like I said, with the ext... I'm fallin way behind!!!

take care,
consuelo dos gatos

[beamishboy]

dale-ray: good seeing ya post! i am doin shot#42 on sunday...we are all shufflin toward the finishline -OOh ya!!.....temps have dropped to 40's at nite and low 70's during the day-perfect fall weather but does keep the equipmnt outa the way,besides i always wear at least a nail apron..
dyce-hope the procrit jumpstarts the system pronto-keep on trucking
fish&kalio-i am so impressed w/ what y'all accomplish on trx meds! Professional conferences @ altitude and ocean kayakin,dang i can't imagine what kinda dynamos you will be post trx...that lil virus does not stand a chance!.....turbo-charged eradication with attitude,gotta luv it...

[sfbaygirl]

I haven't had Aranesp since the beginning of July! My Hgb went up and stayed up for a while. Starting to inch down to 11. I have to get a neup shot next week and I won't make the mistake of doing any Aranesp at the same time. It was even more brutal when I did. Maybe  Hgb won't go down. The aranesp is a whole lot better than Neulasta. At least you get some good feelings from it!

How are you doing? Is it hitting you yet?

[amommy]

LMAO  You poor thing!  I'm so glad my hubby got away!  He was a NMMI grad.  Ok, so that begs the question....exactly WHERE are the fish you are doctoring because at last check, their ain't no water in Roswell!
Oh and I agree, i'm sorry at 120 degrees, heat is heat!

[fishdoc]

I deal exclusively with endangered species.... and last time I looked around, every fish I met was in trouble!!  Interviewed a new yorker yesterday.... "oh I love the outdoors, and I am an avid fisherman".... well lets put it this way, there are lots of fishing opportunities in NM, as long as your not interested in CATCHING!!  hubby always says "they don't call it catching ma"..