It really hit me today, 10 months into TX, cowering on the side of the NYS thruway on my way to my monthly gastro appointment, rear passenger side tire flat as a pancake, just how much of an invalid I've become.
I didn't have a cell phone; it's one of the one of the many things I've forgotten to keep up with; the contract lapsed months ago.
I didn't have the strength to even attempt to change the tire myself. In my pre-TX days, i could have eventually figured it out. it might have taken me all friggin' day but I would have done it.
Steamy Indian summer morning, car parked next to a lush grove of apple trees with plump ripe fruit dangling: I got as far as emptying the trunk to pull out the spare and then started trembling, felt nauseous, couldn't breathe. Raised the trunk and leaned against the rear bumper, hoping I'd spot a good samaritan or a state cop whizzing by. In the back of my mind scenes from my niece's death, 5 years ago, on the side of a Florida interstate, trying to troubleshoot engine problems, mowed down by an out-of-control tractor-trailer . . . I wasn't THERE but I was there . . .
I was in luck. A k-9 unit pulled up, took my info and relayed it to the state troopers but no one showed up.
Joe from PA came by half an hour later and changed the tire in less than 5 minutes, refusing to take the $40 I tried to press on him.
"You've redeemed my faith in human nature," I told him
By this time I was close to passing out; didn't want to drive 60 miles back to my cottage on a spare, got off the next exit and bought a couple of new tires at a local Mavis, drove home, called the gastro telling them why I hadn't shown up, forced myself to go to the local Walmart to buy one of those prepaid phones coz with my luck, when i try to make the trip again tomorrow I'll have a similar incident requiring access to AAA and will once again be stuck.
I'm wiped out. One friggin little crisis and I'm burned, wondering how I'm gonna manage the trip tomorrow. Wondering how I managed to get back home safely today. Wondering if I'll ever again be able to handle such irritating but routine daily crises. . .
Feeling weak, scared, realizing I have next to zero strength left . . .
So sorry to hear all this. That was a nightmare for sure. Thats good that you got new tires and the phone. Its such a long trip to be without a phone, but I can understand how you forgot to keep up with the contract. I was so forgetful during tx and I still am.
Its nice that the man stopped to help. It is scary being on the side of the road like that. Sorry to hear about your niece. My friend and her brother got killed by a drunk driver the same way - waiting for help with their car.
Take a nice shower and put on your pajamas and have a nice cup of tea - that always seems to help me.
Hang in there Wyntre, each day is a day closer to your SVR.
ah Wyntre, so sorry to hear this, here's hoping that you feel better by the time you read this, I think there is always a person to come by to renew your faith in mankind, it's happened to me more then once...I hope you get some rest and peace to give you a much needed boost...hugs to you!
My gastro's 100 miles away, in another state. I moved from NJ to NY in May but haven't changed Dr.'s coz it's so hard to establish a trusting relationship with someone else, plus there's the insurance issue and his staff are really on top of that aspect.
yeah, flat tire 60 miles from the cottage. How'd you survive in the Vegas sun? Did you stay in the car with the AC on? Weren't you afraid the engine would conk out?
Luckily this happened around 10 AM. But by the time I got home it was past 2. Visits to the gastro is a 225 mile RT and is a whole day thing. I didn't make today's appointment and have rescheduled for tomorrow.
Ya know, I've been trying my best to stay positive but as Deb said, it really does feel like one is entombed . . .within yourself.
Everything is such a big friggin deal. I figured out that one of the things I'm furious about is that it takes me 4 weeks to build up strength for the next all day gastro marathon and now i gotta do it again tomorrow and that means siphoning energy reserved for other stuff . . . ..which I can't afford ....my energy reserves have been depleted.
No, lizbo, you're not alone. Sometimes it's pretty darn hard to find the silver lining in all of this.
And, yeah, i got through it, today, but what's scary is I don't know if I will the next time. My confidence is non-existent now.
here ya go! take a peek... Try to stay cool, Ice tea (decaffeinated), Mug Root beer (no caffeine) and if all else fails milk. Hey, after anger and fustration comes.... I got 132 rolls of toilet paper need a roll? lol
I know what you mean about the drive. Both of my liver guys are at least 2 hrs away from me. My regular gastroenterologist is 2 to 2-1/2 hrs to the west of me and for a specialist center/studies type of place, that's 3 to 3-1/2 hrs north of me. It wipes me out whenever I make these trips. But, there's nobody in my county that has even a clue about how to deal with someone like me (who has been a chronic non-responder) with Hep C. All of the gastro's around here are used to just treating once and that's it, they don't even want to follow you or anything. The last gastro I went to on a new pt. visit in this county, sent in his PA-after talking to her-never even walked into the room to introduce himself. Basically, just told her to tell me-there's nothing we can do for you-no over for even a follow-up appt., is that poor or what? Anyhow, I'm feeling depressed myself today. I know I need to be on an Anti-D, but I've never had any luck with them. But, on the other hand, I'm really not functional. I'm unable to work, rarely even get dressed by 11 or 12 every day. This is pathetic. I need to do something soon, to change this situation. And I'm not even on treatment. I've been off of treatment for the past 11 weeks. As far as changing a tire, that's not something that I'm able to accomplish. I did sign up for AAA and I have been having a cell phone (only because my husband pays the bill-he has me on his plan). But, remembering to keep it charged up is my problem. Anyway, I totally understand....
Now THAT's what I'm talkin about. Gorgeous. looks like a giant snow shark.
How about the last pic of cumulous clouds over a mountain . . . where was that?
Love those pics. Just wish I could enlarge them.
Pro - of course - Harvest Moon. Tomorrow, too? Maybe I should reschedule for next week.
i excel in going through the motions, always have, it's the soul-shattering shards that are causing the uncharacteristic loss of confidence.
For the first time in 10 months i attended a public function on Sunday. it was an auction of local artists works. I just watched and as I sat there it felt like all those people were so confident, so sure of themselves, so oriented, directed and i remeber that I must have been like that at one time but now it's a complete mystery to me.....
What a terrible ordeal for you. I'm so glad you are O.K. and everything worked out. I know exactly how you feel. I got in 2 auto accidents on tx. They were both minor, the last one was just a little scrape. But I know the feeling of helplessness. Riba made me feel very vunerable. I had terrible trouble making a financial decision and had to return many purchases. I'm improving since tomorrow will be 2 weeks since I stopped tx. But the M.D. wants to talk to me about my Dexa scan results for osteoporosis. This is life. There's always a new challenge and we just keep on doing our best.
Oh, wyntre. I thought you were having problems. You lose your sense of self but it will return, all of you will come back. I did.
I didn't drive the whole time during tx. I felt like an alien in public.
I couldn't think about cooking.
I couldn't keep focused enough to do anything much let alone anything creative.
Washing my hair felt like a big accomplishment.
Tx effects our hormones. Our bodies are weakened as they deal with the intensity of the medicines we take.
Honestly, coming off tx was like coming out of a deep long funnel. Everything opened up. My peripheral vision returned!
You are marking time now. And the parts of you that are resting, will come bounding back. Really.
BTW: I think those are kestrels fluttering over the grass.
And, very oddly, a few weeks ago we saw a flock of white pelicans flying overhead.
They aren't supposed to be around here, only the brown ones.
Eat a bagel for me, please!!! OH
Should've took some apples. No, wait. That's already been done... Seriously, you've put 10 months into this journey and thats a feat in itself. You've proven your strength and resolve these past months and thats alot to say for someone. There are people who couldn't have done half of what you've gone through so far. I wish it was easy but it's not. It's not fun, it's not enjoyable, it's not pleasant, it's nothing that we look forward to. But it's necessary. We commited when we started. Some of us not really knowing what we were getting into (me for one). Hell, my doctor told me the sx only last the first week and dummy me believed him. In my diary for my 5th week my entry reads "I think the doctor is full of s#*t. I feel like an old man." It was shortly after that when I found this forum and you know the rest of the story. Long story short, stay the course. Don't let the bad luck or bad days deter you from your goal. You're going to make it Wyn. And when you do, the bad parts will fade into obscurity, but your triumph over this will be an inspiration for all those that follow.
Your pain and suffering is their pain and suffering but, when it's all over and done with, your strength will become their strength and your resolve will be their resolve.
It means a lot to me to get such authentic heartfelt responses.
I'm gonna keep going coz i'm a stubborn little b*tch and i get pissed off when I think something's beating me.
But it's fantastic to have a place to come to and confess my weakness. Then I read everyone's advice, stories, strategies, I breathe in your life, your energy, your spirit and I take a little bit away with me so i can jump-start the next trick - like the 5 hour RT marathon tomorrow.
Hawke - i have a great kestrel pic - will email it tomorrow. white pelicans. cooooool
what a great line. "This is life There is alwaya a new challenge and we just keep doing in our best.
Funny. today that's exactly what i was thinking. there's NOTHING fun about this (except forum).
Making contact with fellow fighters is the only thing that makes this bearable.
wyntre - I feel so bad for you. I truly understand. This tx drains the very life out of us. But you are almost there. Everyone here will help. I am still not back from tx land yet so I still have those same feelings you do. I was never a weepy women but now it doesn't take much. You will make it and smile like I did after swallowing that last Riba!!!!!
Orphanedhawk - Its only been 5 days since I finished - liver dr told me will take a month till I start to feel better. Hiw long was it for you.
There's one aspect of this journey that's really fascinating. Watching ourselves turn into people we no longer recognize, trying to have faith that the real you or even better the improved version will pop up.
Don't feel sorry for me. I just need to express myself to people who understand.
I've always been very active, a doer in life . . this other role is a poor fit. Maybe that's the lesson?
good luck with draining the poison outta your body!
I'm a couple weeks short of three months. Its been two giant steps forward and a half step back.Little side annoyances, have come and gone, breifly.
I was feeling really good, energized, creative though not 100% until about two weeks ago. Then I got tired again, began stressing ( I do have cirrhosis) until I broke out with a full fledged cold. I was so relieved that it wasn't my damaged liver roaring at me, I didn't mind the invicible dancers bouncing on my sinus'!
It took almost a month for my wbc to begin to show much improvement. I'm headed to see my liverhead next week.
BTW: The best thing I've done post-tx is get a full body massage. Yum. Enjoy your resurrection.
I know exactly how you feel. When I started prove 3, I was walking 7 - 8 miles a day, living in a 4th floor walk up and not even breathing heavy when I got to the apartment. Within a month, I had to give up the apartment and move to an elevator building. ZI spent three months flat on my back.
You had some bad luck today, but you dealt with it very well and you should be proud of that. You will get through this one day at a time. When we first start treatment and we feel so sick by the first month, it seems impossible to complete the treatment, but somehow we do it a little bit at a time. I know today felt terrible, but you functioned perfectly, got your tire fixed, bought a cell phone and re-scheduled your appointment.
Many people not on treatment wouldn't do as well. This stuff plays tricks on our mind and makes things seem much worse than they really are. We are weak and we need some physical help, but you proved you can get that when you need it. You need to look in the mirror and be proud that you are handling this better than most people could.
I've been off the meds for 2 weeks now and I burned a burger last week and could only eat it on one side and I burned another one on both sides and almost ruined my pan 2 days ago, and I was standing right there in the kitchen next to the stove and sink. I won't cook anymore veggie burgers for a couple months. The riba makes you very distracted. It's very hard to concentrate on one thing. When I drive I'm very careful, lucky and blessed. I don't have anyone else to drive for me. But I don't have to drive a lot fortunately. I get my end of tx viral load today. I walk a mile with my walking club first.
Isn't it awesome that we have the forum to come in and just cry sometimes? To people who understand exactly what we mean (cause face it, regular non-heppers just can't get it).
I could barely drive during treatment - just couldn't concentrate enough on things out of the peripheral of my sight. I probably wouldn't even have known I had a flat tire - you are WAY above my intelligence level on the stuff...just wanted you to know that! :)
Hang in there honey, it will get better. Cry when you want to though - THAT is why we are all still in here...so that others have someone who understands. The technical stuff is easy, it's the emotional stuff that is so difficult.
Kudos to you getting it done and to John from PA your angel coming by!
I was on 1600mg of Riba and I only weighed 140 lbs. This was with daily Infergen. That was on my treatment before last - prior to the VX trial. Unfortunately, for me, even this did not bring SVR. I'm resigned to the fact that no matter how much interferon and Riba I take, w/o a stronger drug (not VX), added to the mix, I'm not going to clear. After doing it 9 times of trying, it's obviously not going to work with just SOC and I can't handle doing VX again with what I went through with the rash and all. I don't know what I'll do, or not do. I have a window of time to work with since I'm still prior to cirrhosis. I'm sorry if this is not helpful, but I'm having my down moments lately, too.
There were so many touching and supportive comments made in this thread, I'm so glad I chose today to log on. What scares me is that I see so much similarity with how you tx'ers feel and how I do- and I'm not tx'ing yet. I really don't know if I have the strength to keep it up if I have the sx some of you do. I really, REALLY admire all the courage I see from you all. I feel like I saw something in every one of your posts that struck a chord and I'd love to reply to... but to avoid boring everyone to tears and creating a mega-post, I'll keep it to a few.
Wyntre, I hope your trip today is much less stressful! And y'know, I think you functioned admirably too. I would've been way too pi$$ed off to have the presence of mind to go buy tires and a cell phone after. And I'm sure I woulda thrown one h+ll of a tantrum even with the million people driving by!
Grandma- Congrats on finishing tx!! That's awesome that you're in a walking club. I love to walk but always end of doing other thinks- having people to go with is a great idea. Best of luck with your results today!!
Susan- I'm sorry to hear how many times you have gone thru tx without success. But hopefuly your liver has gotten a good break from it, although I don't see how you endured it. Talk about a test of strength! I hope that soon a tx will come out that works for you- it has to, after all you've put into it.
Everyone else- I'm glad to see those who have ended tx and are feeling good, and those who are counting down the days. To all those who aren't feeling so great, you're in my prayers.
I wish i could transport myself to NY every time you have a gastro appointment, so I could give you a ride. Your name goes in my hero book. 72 weeks, wow! No matter what happens, you're going to beat this devil. Best wishes for a beautiful autumn weekend.
I got the official go-ahead from my gastro today. it's full steam ahead for the 72.
After presenting him with copies of the studies Valtod provided links to, as well as the berg (thanks Za), Sanchez and a few others, he agreed it made sense for me to continue.
I asked him what he would do if he were in my situation and he said he would also try to improve his odds of SVR and that 6 months of additional TX for a much better chance of a cure sounded right to him.
So, here I go - 40 weeks down, 32 to go.
BTW - I'm still UND - he does PCR's every month or two.
You must be thrilled to have the last 24 shots in your possession. it represents the end of this marathon for you. I'm gonna post when i get my last shipment, too. (sometime in early February).
So sorry to hear you've been having the tearies. Me too (except i don't exactly cry). Must be the cumulative effect of the meds.
Love the autumn barn scene.
I can't imagine going through this nightmare 9 times! Of course you're having down moments! I just wish you could get into a trial group. Hopefully the new drugs will be available soon.
Even YOU would have known you had a flat tire! Man, I was going about 80mph, in the far left lane, when the car started shimmying and shivering and grinding along the blacktop. I don't know how I managed to get over to the right shoulder as there were tractor trailers to the side, front and rear of me.
When I got out to check the damage, it wasn't just a FLAT tire; it was SHREDDED rubber! No slow leak there. Guess I must have run over something real sharp.
Thanks for the kind words. And, don't worry too much; some people have much milder reactions to TX or, if they do have hard stretches, it's generally not every single day. You're quite young so i would imagine your body might be able to handle the meds fairly well. Still, it's no walk-in-the-park.
Awwww, I wouldn't ask my worse enemy to drive through NJ for me! As long as the labs remain at current levels, I should only have to make that trip for 8 more months, 4 -8 more times altogether.
Thanks lady. How are you doing? I haven't seen too many posts from you recently
I'm glad the trip went better today...hang in there...you have made it so far!!!..i totally understand about the meltdowns, and feeling so unable to do anything...i hate that part of these meds...but you/we are strong!!!!....be blessed....and know we are pulling for you!!!!
Oh, you did good, presenting those studies to your doc and getting your 72 weeks approved! It feels good to know that the road ahead of us is approved and "all" we have to do is walk down it til we reach the end.
My doc has been a little edgy about my blood counts lately, so I was afraid he would back off from his promise to let me extend. But now with the prescription for the remaining meds in my posession, nothing will stop me.
I can't even imagine the ordeal you went through with the flat tire. I have problem standing in line, waiting for my turn, in the grocery store. I feel like telling everyone, or shouting really: "Don't you understand what it is like to be on ribavirin! Let me through!"
My WBC and ANC tanked the first month of TX going down to less than 25% of pre TX levels. Dr. put me on twice monthly neupogen and while those counts still haven't risen to more than 50% of their original level, at least it's kept them under control.
The flat tire thing was EASIER somehow than waiting on line at HOME DEPOT!
Maybe coz i knew I'd be up the creek if I didn't handle it. It took every ounce of self-control and restraint I had.
The notion of being stuck there for hours, 60 miles from home and NOT getting back to the cottage was worse than dealing with car repair it but it took my last reserves of energy to get through it.
And, true to form, while I didn't meltdown on the spot, as Jools put it, everyone on Forum got to witness the print version last night! *LOL*
My blood counts aren't that bad. It is just that my doc goes entirely by the book. "Reduce riba at a hgb of 10...", but my nurse forgot to notify him that it went down to 9.5. Sometimes you gotta be lucky.
Kids are back. I am yelling at them most of the time. Dog is lucky to still be away. My eating habits are totally out of order, I often skip dinner, but today I ate steak at both 10 am and 5 pm. My body shrieked after protein!
I am glad to hear you seem to be doing better after week 40.
didn't read about your ordeal until now. The good thing reading the thread was seeing that these moods too will pass. Congrat's for deciding to go the 70+ weeks.When did you reach UND? Some days it gets overwhelming and it just sux. I am horrible those days when I feel hopeless. I tend to bring down my support as well. Keep that song refrain in mind. "I get knocked down, I get up again,nothing gonna keep me down!
Hugs & msending you positive energy
You gotta tell me all about the conure; is he hand-raised - is Nick the first human . .male or female? how old? what kind of cage? Is he perch trained?
tell Nick to take it slow for now with the parrot. they have a fairly long life span - 30+ years and Nick will have plenty of time to work with him.
It's gonna take a while for the bird to calm down, especially if he's not hand-raised and is not a baby. So Nick has to be patient. Perch training is the first thing he should do, and it will solve the biting problem for now.
(Why'd ya tell me about the conure? *LOL*)
Two other things; Are the bird's wings clipped? I hope not. Let me know. And how long has Nick had the conure?
Sounds like he's already bonded with Marie. It might end up being her bird. That does happen fairly frequently that a bird will prefer one member of the couple more than the other.
Yes, the step-ups are the first training Nick should do, holding one perch in each hand and alternating the placement of the free one under the birds belly. My guys used to love that. Plus it protects the human from biting.
next thing is to slowly and calmly try to touch the toes. That may take a couple of days, even a couple of weeks. never keep the training going to the point the bird gets stressed.
treats are good. a lot of parrot people like to offer them between their lips - it encourages bonding. . ,Venus often tries to feed me. Most parrots adore millet spray, all kinds of fresh fruit and veggies and people food.
Before I became a vegan, i used to buy roasters for Bonnie (my deceased puppy) and Venus would fly onto the bird and start peeling away the skin.
"That could be your relative!" I'd yell at her.
Just tell nick NOT to insist on much from the bird right now other than that he's relaxed and confortable.
Sprayihg him with a plant bottle is something most birds like, plus it gives them something to do - it takes around 6 hours per day for them to preen all their feathers.
Also, the bird should be let out of the cage for short periods.
As long as Nick is using perches he shouldn't get bitten and pretty soon he should be able to graduate to finger training.
of course if the conure has a huge crush on Marie, all bets are off. *LOL*
I'll dig up some conure info and post it in your messages section.
The reason you haven't seen many posts from me is really stupid. My family and I don't like to watch TV series because we get crazy when we miss a show, so we wait for the DVD to come out before we even start. Well, my niece bought the boxed set of West Wing, and it's totally addicting. We've watched the first 4 years worth of shows in the past 2 weeks. It's crazy. The Sopranos are next.
Congrats (I guess(g)) on getting your extensions approved...Zazza, I script in hand-nice...I never actually get anything from my doc...everything is computerized...
Wyntre, perhaps now is the time to get a backup plan for meds in place---just incase your insurance co screws with you....Not sure which peg you're on, but I would call for assistance info from the manufacturer....Ask your doc when he/she is going to submit the script for extension...Check with your insurance company about extended benefits for tx.....get those ducks in a row, and you will have one more less thing to worry about...........;^)
Off to the skin doc today for a checkup.....hepatologist,dentist,opthamologist,dermatologist.....I feel like a patient-ist (LOL)
I agree - maybe Marie has a secret pet name for the conure, something pronounceable!
BTW, something that often works with birds is taking them into a small space, like a bathroom, for training. They can't get any speed up and can't injure themselves if they try to fly away coz there's nowhere to go.
just make sure you tell Nick to CLOSE the toilet cover! Seriously!
birds have been known to land there by mistake and . . . yup. . . . drown.
Oh, I'm a virtual encyclopedia of useless parrot lore. *LOL*
"Why the dermatologist? " Just an annual checkup. Checked out fine...;^)
You mentioned an orchard during your tire ordeal.....Tip O the day,,orchards began picking "Honey Crisp" apples around here a few weeks ago....If you have never had a honey crisp apple, you ain't been liv'in right, they are absolutely fab.....
Hey... I Have had my Hep C since 1983 too... blood transfusion when I had my daughter Jade. She is married and living in Florida... Orange Park. Seeing your profile made me really miss her. I haven't told her the news... can't see any sense right now with all the miles between us. I am in Maryland.
no, not mine, just borrowed.....I'm kinda into barns...changed again....
thinking of ordering this Charles Wysocki print- whistlestop christmas, I've had it on the puter as wallpaper for years. I have a few Will Mosses prints and think this one would blend well.
Kinda gives you that warm and fuzzy feeling (g)
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