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Dealing with post-relapse FEAR

Hi everybody, hope you're having a side-free good holiday weekend. A brief review of my history--57yo f g4 for the last 36 years; did 71 weeks of peg/copeg, cleared for 15 mos and relapsed almost immediately after completing tx.  While on tx, I was remarkably open to everyone (friends, family, acquaintances) about the the disease, my treatment, my feelings, etc. Since relapsing, I feel vulnerable and less willing to share my struggle with anyone but you guys.  Post tx and side-free, I feel pretty good. I have much more energy. I do however have terrible pains in my hips, knees and elbows, which have never been so bad--pre tx or during tx. Uncharacteristically (for me) I don't share this info with anyone. When people ask me how I'm doing, I always respond that I'm feeling GREAT! It's kind of isolating to lie, but I guess I don't want anyone to know how scared I am. As to the joint pains, I'm wondering if it's a post treatment side effect or simply my age, or the disease itself settling back into its long-time home now that it's not being thwarted by the meds. I'm taking the whole thing much more seriously and I want to know how others of you (Califia, Ina, Vicki, honey, and anyone else here) have dealt with the feelings I'm describing. I am seeking many medical opinions of my situation so that I can figure out my next step...but it has done little to allay my angst. Just not comfortable at all right now. Thanks for any input. I love and miss you all. Judi (trying to smile again) :-/
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Avatar universal
Wow...I've been really busy and haven't been able to check in much this week...I had no idea that this thread just kept going and going. It's almost 1 am so I can't respond to everyone...mainly I just want to say that I feel so blessed and honored to be part of this amazing group. I'll be checking in more often as soon as the next couple of weeks pass...too  much stuff happening here.

Califia, Susan, Cuteus: I'm starting to take glucosamine and Sam E this week (after I check out Puritan Pride! Ral, glad you're hanging in there and attitude is back. Susan...so excited for you...hope the test results are great. I know I'm forgetting people, but I took some benadryl earlier and it's starting to work on me. zzzzzz soon I hope. Pain continues, but I'm kicking it in the ass. Love, Judi
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Avatar universal
You mentioned new drugs in one of your comments regarding the August 9 NYC gathering. What new drugs do you mean? I guess I am not in the loop. I just relapsed after 24 weeks on the TX. VL at 6,000 now. My doctor mentioned new treatment on the horizon, but haven't heard any real conformation. Do you have a web address regarding the newest treatments?
thanks,
rhema
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Avatar universal
ral; I am relieved to read your newer posts as it seems your survival instinct is taking a strong foothold and affording you a different perspective on your personal situation. You will see the good at some point, when the hurt lifts a little more. There must be a feeling of emotional betrayal to some extent, but your strong spirit will help you smooth those wrinkles out. You are part of the group I was tracking that included Layla, dollface, you and me. I have no doubt you will join us in SVR. I have a feeling about the new drugs, this might be it, finally.
Why don't you come to NYC for the Aug 9 march? We'll get a MH group together!
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Avatar universal
grrr! brainfog or senior moment?
I was going to say AMEN to the parenting statement, there is nothing more fulfilling and meaningful than raising a child.
Of course, if life prevents some from enjoying this, there are other ways to get emotional enjoyment, but I still believe raising a young is the highest achievement.

susan; is Thursday, payday for me and you? isn't the test today?
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ral
my email is ***@****


Take Care
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Avatar universal
read this post for the details:
A HCV MARCH IN NYC.... - DRAGON SLAYER: 06/20/2005
I am on vacation so I am going to hop on the LIRR with my daughter, God willing, and make sure we get a t-shirt.
Then we can lunch somewhere good and make a day of it. I hope others can join.
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Avatar universal
Bob - hold on to that great attitude (but I don't know about eating a whole elephant,  it really might be a lot easier to become a vegetarian..)

Susan, let me add my warmest wishes for this new chapter of your family's life.  All those posts from exasperated parents about their teenagers are baloney, there really isn't anything better.
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Avatar universal
Bob and Willing,

Thank you both!



Cuteus,

Yes, the beta test which will reveal whether or not this is a viable pregnancy is today.  My surrogate did the blood test at 7 a.m. and now I'm waiting for the clinic to call me with the results.  I'm a nervous wreck.  My earlier optimism has completely  run dry.  I'm bracing for the worst.  There's no reason for me to feel this way except for a long string of failures and disappointments in this department.  I just can't fathom that it could work out this time.  

Arghhh!  This is as bad as waiting for a PCR test!  Maybe even worse.  I'll let you know what the verdict is later today.  Not expecting the call until late this afternoon.

Keep your fingers crossed.

Susan
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Avatar universal
ral
Thanks willing and cuteus for your encouragement We will all keep truckin with our problems.

Here is my email address contact me offline and maybe I will show up in N.Y.. I would be great to see Brooklyn. I was born there.

Has anyone seen or heard from mikesiemon? I would like to know how he is doing.


Take Care

B.L.
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Avatar universal
ral
Thanks Susan

That is my wife's name. I do not hate her THANK GOD and I know I have not been and easy one, but I believe in till death do us part also. Who knows what the future brings. I will play my music run my business and enjoy my freinds and all the hope my freinds with this disease give me.

I will eat the elaphant one bite at a time. I am so sorry you had to go thru with what you have gone thru also. I am really praying for you with your baby. I know how much you want this and I pray for you your husband and baby.


GOD BLESS
Susan
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Avatar universal
I understand how devastated you must feel about your wife leaving.  I'm sure it wasn't easy for her during your treatment, but I'm still a firm believer in the "'til death do us part" thing.

I don't want to give you false hope, but my parents divorced when I was in college and later remarried each other. Sometimes being apart for awhile can help people gain perspective.

Whatever the future holds, I hope you'll make sure that you surround yourself with people who can be supportive during this difficult time.  Even a counselor might be worth considering. The worst thing you could do is to isolate yourself.  

Somehow you'll get through this, Bob.  It may sound trite, but here's something to think about:  "How do you eat an elephant?  One bite at a time."  

Sending a big cyber-hug your way...

Susan
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ral
Thanks so much Dallas

GOD BLESS
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Avatar universal
ral
Thank you guys so much. I really needed the encouragement. It is real tough right now. The relapse I could deal with pretty well, but the divorce I thought would never happpen.

My wife after 27 yrs leaving is quite a blow and especially knowing I have to re-treat but that is the way it is. She left a couple of times when I treated the first time so it is not a new pattern for her. I think she is scared to death of being without out money and someone to support her. I understand we are all human but she let the fear get the best of her and her inlaws supported her leaving. I will see some good here soon, I know I was very tough to deal with on tx and after, but she has been sick for yrs and it was not easy and many times friends of mine said leave her and I said no way will I leave a woman sick and especially my wife. My concious is clear now she will have to live with hers.

Thanks again

Bob L
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Avatar universal
whoa Bob, sounds like you're a in pretty dim neck of the woods - I hope the sun breaks through before too long. You know damnn well there's no more sense beating yourself up about not getting to SVR than there is about buying a lottery ticket and not winning. You placed your bet, rolled the dice, and if it didn't go your way what else can you do but move on? The divorce must cut to the bone - 27 years is a hell of a long time - but you know it'll eventually heal like everything else. Take it easy - and staying away from the meds for a while sounds like the right thing to do. Whatever benefit there is in maintenance dosing is pretty marginal, and you've got to get your mind in a better place first. Take care of yourself.
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Avatar universal
Judi - have you tried Glucosamine ? I had a lot of joint pain pre-treatment & started using this on recommendation of a friend... It works really well ! It's helped a lot of old sports injuries to take a back seat.

Am coming up to week 21 of 24 & have found I get general leg pain but not in the joints... have not tried the glucosamine on this as I felt I was taking so many things each day & I wanted to cut out just one.

Here's a description from the Web:
Glucosamine is a form of amino sugar that is believed to play a role in cartilage formation and repair. Chondroitin sulfate is part of a large protein molecule (proteoglycan) that gives cartilage elasticity.
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Avatar universal
I'm really grateful for both your suggestions. So here's my question: can/should I take both Sam-e and Glucosamine Condroitin?? Several of my friends take the glucosamine and swear by it. Sam-e I only know about from Susan. I'll google both to see what I come up with, and I guess it would be wise to try one at a time, but I don't know which to try first.
decisions, decisions...wish there weren't so many to make! Judi
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Avatar universal
Judi,

I'm going to defer to Califia on this one.  My hunch is that there wouldn't be problem in taking both, but let's see what she says.  I've never taken Gluscosamine/Chondrotin.  My husband does and says there's definite improvement in his age-related aches and pains, but that it's not a panacea.  SAM-e on the other hand, is a panacea (in my opinion).  It took away ALL my pain.  Every bit of it.  And it's great knowing that it's helping my liver, too.

Whatever you decide to do, I hope you get some relief soon.

Take care, Judi.

Susan
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Avatar universal
There is an ongoing sale at Puritan's Pride.  It is the one I always wait for because I get the best prices. Buy one get two. There is an advanced c-jointin formula with all the joint stuff in it.
The Sam-e is actually about $20. a month with this sale, so stock up. I did not feel any different as far as joint aches go with it, but it did mellow me out a bit. Hopefully it will work for others.
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Avatar universal
I luck out with the above company because the outlet is by my work and I don't have to pay shipping, but the rate is not too bad since it is a standard fee no matter how much you buy. So it pays to stock up.
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Avatar universal
Personally I've never taken glucosamine and I haven't researched it  thoroughly.  I don't know why you couldn't take SAM-e at the same time, though, especially because the latter helps so much with liver function and mood.   Seems like a pretty benign combination.
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Avatar universal
Ral I am so sorry to hear about your relapse, you & I started Tx around the same time, but if I am not mistaken you extended yours? I hope things get better on the home front, life seems to work in some pretty strange ways, but I am sure you will do just fine. Hope you have been feeling well. "Inspite of it all"

Thinking of You

DallasStar

Tallblonde-I read you news some where, but I lost where it was at, so I will post here...I am so happy to hear that you will be a mom in the near future, this must be the best news in the world, I know that you have gone through alot of heart aches trying to become a mom. You will make a wonderful mother

Best to You Susan

DallasStar
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Avatar universal
Judi,
So sorry you're feeling badly. Try not to keep that burden to yourself. The load will be lighter if you share some. Hang in yhere.
Lauren
P.S. Miss you all, am thinking about you all.
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Thank you, DallasStar, for your kind words and good wishes.  It really means a lot to me that you took the time to write.  Hope you're having a wonderful summer!

Susan
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Avatar universal
I missed reading your post until I saw Willing's response.  I just want you to know that my heart goes out to you.  The past four or five years almost did me in, too.  The year before I was diagnosed, I had four miscarriages -- that's roughly one every three months.    Life seemed grim and hopeless.  I honestly believed that nothing good awaited me in the future.

But life does have a way of leveling out and eventually turning sweet again (I'm on cloud nine this week after finally achieving what looks like a viable pregnancy). Good things and good news will come your way again. Please try not to give into despair.

Sending you a big hug...

Susan
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