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Post Info TOPIC: Having a bad day


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RE: Having a bad day
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Hi Juliet

Whining??!  It's venting and we all need to vent from time to time so "stinkin thinkin" doesn't begin...that can be a whole other demon.

I understand completely of walking this journey alone, it certainly has it's dark side but on the other hand, look at you Girl!!  You're on the train to the cure knowing you'd be be riding solo, yet you are doing it!

I'm not minimizing at all.... but in life things do work out exactly the way they are suppose to whether we understand it at the time or not.  Sometimes it's difficult to get our heads around it.

I know you have this!!!   number1.gif

RR



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GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 

Tig


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I would still contact one of the area home health agencies, or call a local HCV support group. They often have resources you will benefit from. I would ask the home health agency if they can check what kind of authorization your insurance company requires or advise you on whom to discuss it with. I do think the referral from your own doctor is a sound idea. Don't hesitate to seek a second opinion or third. We'll keep trying! Whatever it takes... 

 



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Hi Juliet - I can relate about the driving. My daughter is  a senior in high school. She claims that I freaked her out while teaching her to drive. Ok, I admit that my anxiety did go sky high while in the passenger seat, but still..... I gave her options of people that would be good teachers, but she said that she wants to wait until she is older. Still hard because I have to take her where she needs to go. She will eventually, so I do feel your pain! evileye



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Hi Tig, I can afford home health care ONLY if my health insurance pays for it because I have no money whatsoever to spend. That's a big reason why I want to get another doctor, because I would need physician justification for it. My "doctor" seems to think that hep c doesnt make you sick unless you have liver damage and any problems I have should be handled by my pcp. My primary care "physician" will just ask, what did your gastro say? I cant believe the terrible health care providers I have these days. I live in the Seattle area, where you'd expect the cream of the crop, right?

It's all still a challenge, though. My oldest daughter at home is now 21 but she doesnt drive, claims she "can't" learn. This has been a huge conflict between us. I keep telling her she has to learn, I keep coming up with suggestions but they go nowhere. It really has little to do with helping me, it's the fact that as an adult in the suburbs who doesnt drive, she will always be dependent on others and sometimes, frankly, a pain in the ass. I accept that some people actually cant, but I dont believe that she's one of them. And some nondrivers who ride their bike everywhere, dont add to pollution and traffic, are to be admired. Problem is, all the non drivers I've known may seem self'sufficient but become burdens on their friends and family at some point. I just really dont want my daughter to be thst kind of person.

Rambling again....

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HCV genotype 3b, started my 12 weeks of Sovaldi/Daklinza on 10/15/16.
Probably infected 1 - 2 years ago, viral load 800,000, fibrosis stage 0.

Tig


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Hi D,

I'm so glad we have been able to help. I agree wholeheartedly, you should consider another practitioner if the one you have is dismissive and refuses to listen. There are far too many willing to do just that. It's an important part of treatment and recovery to have compassionate care. You have already discovered that with your Cryo, some listen and some are concentrating on other things unrelated to your plea for help. If you don't need a referral, I would make some calls. If you do, and your current doctor asks why, tell them flat out, they need to do a better job of listening.

I saw from your profile that you're up in the Great Pacific Northwest area. I took a look and there are dozens of Home Health agencies and liaisons that are ready and willing to help you. If you would prefer to contact them directly, you will get some direction. Nurses are the best and most caring individuals. I know there's one out there that would be thrilled to help. If I can help you with some additional information, let me know. Here is one that I found, no endorsement implied, but it's a number to call and just ask questions. They often have a Social Worker that can provide you with some assistance. HOME CARE 

You keep in touch and we'll all be dancing on the day of your SVR party! Take a deep breath, head up and charge.... you can do this!!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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You guys are the best! I've been on a few other forums throughout the years, and I generally observed that people were supportive about specific problems or concerns. But if someone was feeling just generally way down in the dumps, they tended to avoid them, as if despair were contageous or something. T
I looked into my health insurance and found that they seem to have a quite liberal policy with home health care, although I still don't know all the details. The problem is that I'm sure my "doctor" (actually a physician's assistant) will never push for it. She has in her mind a specific set of symptoms for every condition and won't consider that symptoms can be specific to the individual and/or can indicate complications. When I developed symptoms of what turned out to be cryo, she completely blew me off and said none of my symptoms had anything to do with Hep C. But they have everything to do with cryo, which my GP recognized immediately! She blows off my other symptoms too, even though they are things that are known Hep C symptoms or complications. Seems I'm always getting stuck with these non-doctor doctors. Sometimes I feel when she leaves the room, she's thinking, "uhhhhh Hep C. That affects the...uhhhhh.....LIV-VER, right?"

But last night I was struck with the thought, what's stopping me from finding a new doctor, one who has both knowledge and compassion? I only went to this one because I was referred by my GP, who initially diagnosed me. Back then, I was in such a panic that I had Hep C that I just wanted to take action ASAP, not spend time researching doctors.

I'm a pretty isolated person, but you guys are right that some people would be more than willing to provide support if they know that you really need it. I used to be a sort of lay counselor for people who'd lost a loved one to suicide. Over and over, I'd hear, "if only I'd known, I would have done ANYTHING to help." And I would tell them, of course you would have but your loved one chose not to give you that knowledge.

So many times, all you need to do is ask.

__________________

HCV genotype 3b, started my 12 weeks of Sovaldi/Daklinza on 10/15/16.
Probably infected 1 - 2 years ago, viral load 800,000, fibrosis stage 0.



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Really sorry to hear about this and know it will not last forever. Although at the time it seems like it will. I will spare you the trite cliches. 

If you are friendly or even semi-friendly with your neighbors, ask them when they go to the store to pick something up for you. You will be surprised that people enjoy helping others as it makes them/us feel good. 

Canuck and Tig offered great advice. Please talk to your liver doc and see if they can get you some meds to clear up the ears, face, etc as well as they may know others docs that are more sympathetic to our issues. 

Wish I was closer girl!

 



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Hi Juliet - Anytime you want to yell, scream, cry, laugh, rant or rave don't be afraid to do it here. We are all in this together and understand that sometimes you have to let it out. I have felt the same way, When it feels like everything is going wrong at once and you just can't take it anymore. Trust me I know. Then you have to figure out a way to make it better. Easier said than done sometimes. There are a few things in my life that I still haven't figured out how to make better, but there are quite a few things that i have made peace with and that are better. The big thing is to get to your doctor to see what they can help with. They should be able to help you to feel better. As soon as you are feeling better physically is a whole lot easier to deal with everything else. 

I agree with Canuck, can your girls be of any help? The doctors office may be able to point you in the right direction as well.

You are NOT a loser Juliet. no Have faith that things will get better. We all go through rough patches now and then. You are not alone! Hang in there kiddo! We are with you.



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Tig


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I wish I had seen your message earlier cry Sorry you're having to deal with all these issues. One of them is a problem, ALL of them at once is a mountain. 

I agree with Canuck, you simply must speak with your doctor and get some answers, along with some relief. If you ask your doctor to write the order for temporary home health assistance you can apply for that help. Most carriers provide coverage for just this reason. I had such help during some surgery I had. Please check into it, your area should be flush with good help.

If there is anything we can help you with, please let us know. Wish we could be there for some physical assistance. Stay in touch and keep communicating, we're here for you.



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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... "whine"... ?

It is NOT whining!!

For what you are feeling and expressing ... the answer is "yes, indeedy you most certainly can express yourself and unload here"! Right here with us is a good place to do so.

Sorry for how you are feeling, it is NOT nice. Some of us have known days and periods like these too, hard to get through these times.

I like (on your other threads today, about cryo, etc) your glimmers of anger at the dermatologist, it shows some of your objective gumption/fortitude, ... you may find ... that you turn around, find and pull up more umph from your bootstraps, more than what you think you got left today, more than what you should have to be forced to find to pull up and grab onto ... I just know you will find more "second winds", one way or another, to get you through these times.

Think hard, who else can you enlist a favour or aid of? You might just be surprized who may do you a kind favour, a run to the store, a small loan, be sympathetic or soothing, just because you make them aware that that you are (at the moment) at a low point, at a disadvantage, being unwell and under the weather. People often surprize you, that they will be willing to help with the odd kind deed, because it makes them feel better too. You are kind of helping them when they help you. It sometimes works out that way. Don't be afraid to ask, it "goes" around. 

You can't pick family! Sometimes they are the hardest folk to be of any help, but your two girls, when it is explained to them why you must ask them to help you, probably will. Does your oldest one drive? Enlist their aid in the best way you know how. If you do not ask them, direct them, in how best they can assist you, they may not see why or how they should do so. Try it more, ask for them to allow you to be more dependent on their assistance during this treatment period. They "might" surprize you.

You sound like I was, wanting not to go out/be seen with my skin issues, but, one way or the other you need to purchase some "sets" of large white cotton gloves, and perhaps some large latex gloves to protect your nails and nail beds.

You need to go back to the doc, for more following and advice (and possible scripts) for all these areas of concern, face skin, ears, throat, fingernails (if not the hep doc, then your GP, and ask to see another NEW  dif. dermo).

Keep trying to obtain a little more assistance from your daughters, who ever else you might be able to think of, and of your docs. Concentrate only on finding some relief for your most pressing physical and social needs.

Boy, do I ever wish i could send you pics of what I looked like too (face and ears!) - that might make you feel a wee bit better, I donned sunglasses, hat and kept my head down! I know the feeling. Hang in there.  C.

 



-- Edited by Canuck on Monday 31st of October 2016 05:50:38 PM

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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Hi everyone, can I just whine for a bit? Most days are good, some not so good. Maybe not all my woes are due to tx, but they are especially burdensome now. I feel just awful and cab barely get off the sofa. I lost a fingernail last night, the whole thing ripped off its bed and it really hurts. Other nails are pulling off the bed, too. My left ear is killing me, it is completely filled with wax and none of my efforts to irrigate it or soften it up with warm olive oil are doing anything. WHen I take a mirror and look in my ear it is like a solid wall of paraffin. I also have a terrible cough from the ulcers in my throat. I just heard the cat doing a howly meow, which means she is going to vomit. I want to cry because I cant get myself up to clean it up. I could use some things at the store but there's no way I can drive today, and I have a big black ulcer on my face that's embarrassing it's so scary. I'd give anything for a caretaker to take care of just a few little things and maybe give me a hug once in a while. But I have no one, no friends no family. Well, no family that gives a crap. I will probably have to declare bankruptcy soon. I never answer the phone anymore and Im afraid to open my mail. Fifteen years ago, I was a hot babe with a six figure income, a fascinating studly husband, and everything in the world I could ever want. NOw I feel like I should have a neon LOSER sign on my head. Sorry for the mega whine, I am just about as low as I can get today.

__________________

HCV genotype 3b, started my 12 weeks of Sovaldi/Daklinza on 10/15/16.
Probably infected 1 - 2 years ago, viral load 800,000, fibrosis stage 0.

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