Post Treatment Diaries II

[Betty W.]

Max, sounds like you have gotten a lot of post tx "stuff" under control....
I wanted to know if you had any "Brain Fog" before treatment? Don't know whether its the age thing or HCV ! It isn't so bad that I can't function, I do need to make a few notes. I received a package from a store the other day and I do not remember ordering it !! That is a weird feeling.....
Hope that alls well with you. Betty

[Pancho and Lefty]

Max, sounds like you have gotten a lot of post tx "stuff" under control....
I wanted to know if you had any "Brain Fog" before treatment?

Betty,

I had a lot of brain fog before. I've gotten a little more foggy each of the last 15 years.  I really don't know how much is aging. . . how much hep. . . or how much something else. I probably got the virus in 1967. What I can do is keep you posted on how much I get back. I'm hoping to get a little clearer than I am right now. 

Max

[Lee]

Pancho...that is wonderful news about your sister...she is truly blessed!

It sounds like you are doing well, progressing for sure!....I love your outlook and feel that is the secret of your success...keep up the good work!

Blessings always,

Lee

[Pancho and Lefty]

Hi Heppers,

It's been 4 wks since the end of tx. Most of the sides have dissipated. Muscle strength has largely returned and overall energy level is pretty much back to where it was.

Overall, the bod isn't in any worse shape than it was before tx. . . it's 60 yrs old and had a lot of heavy use and abuse. . . most joints and load bearing surfaces are simply wearing out.

I have got some skin stuff going on. . . still sun sensitive. . . got slight irritation around the corners of my mouth. . .can't remember if I wrote about having a whole bunch of small blisters break out on my chest during a bike ride. The hair looks strange. . . apparently. Although people who know me don't seem to notice, the general public seems interested in my appearance. Don't know why. . . I really don't care what they look like.    And. . . if someone wanted to be critical, a lot of them don't look so great either. 

And in the end. . . I'm writing this with the hope it may provide someone with a point of reference.

Life is very good here. . . hope it is where you are, too. 

Max

[Betty W.]

Max, If I could have one wish in life I would wish for self disapline and stamina that you and Mouse seem to have. I  admire both of you so very much. I pray that if at some point in my life I have to treat, you and Missy are around the corner somewhere urging me on. Don't know if I'm made of the same stuff you all seem to have. It is such a big help having these diaries for others and poss. me one day !!! A great big THANKS !!!
God Bless, Betty

[Pancho and Lefty]

Hi Y'all,

It's Monday, Sept. 29. . . just over five weeks since the last doses of IF/riba.  I think I may be seeing some positive changes in my system's ability to heal itself. I did some service work Saturday that involved physical effort. . . . it felt good. Cut my finger with a sharp knife and just let if bleed. . . it stopped in a few minutes. Two days later it seems to be healing. . . before tx I would have had to keep bandaids on it with neosporin for several days to keep it from becoming infected. Yes. . . my perception is my reality. . . and no, it may not be remotely related to the truth. 

The fact that my hair isn't showing any sign of regrowth is certainly true. . .regardless of perspective.

I think down the road somewhere I'll be better able to assess any permanent benefits. Yes, the question of whether the virus will remain clear has crossed my mind a few times. Whatever the end result. . . I don't see any way I'd ever retreat. . . for several reasons.

Sorting out the little mental/emotional glitches is still a puzzle, but that's really nothing new.  I had an episode at the grocery yesterday that shows my emotional stability doesn't stand on bedrock.  Firming up the foundation is an ongoing process.

One of the taller hurdles right now is getting established back in some kind of work. There are some interesting dilemmas for a sixty yr old white male with a long resume/vita. There are fewer options as time goes by.  So what do you do with good old boys like me. . . anyway.  I would really like about ten more good years. . . ten years of living with gusto. . . a full life of service, adventure and feeling all the feelings humans are capable of. Not sure how that will work with the 'fire in the belly' noticeably cooled these days. . . some of which is directly attributable to tx.

Anyway, for now, I feel progress in the recovery process. . . and that is my reality today. 

God Bless. . . Everyone

Max





 

[MissyMouse]

Fred,

You  have such a great outlook.   I've learned that I truly am not employable anymore.  There are days when I certainly could function in the work world and a lot of days that I can't.  Problem is I never know in advance which days are going to be which.  And I know that I cannot expect someone to employ me and retain me in their employ with the understanding that if I have an RA flare I cannot use my affected joints (usually my hands and feet) during the flares.  I can see it now, excuse me Boss, but I'm having an RA flare and cannot function for anywhere from 3 days to 3 years.  It's been a very hard adjustment period for me full of guilt for putting skydiverbill in the position of having to support me.

I don't want to "waste" away so I've decided that after treatment is over I am going to become a Red Cross Volunteer for disaster relief.  If I ever am in a position of going back to work I know that I will not spend that time sitting behind a desk like I did for 20+ years in the legal profession.  I want to get out in the world and I want to be physical when my body allows it.   And I want to learn from my elders like you.   

Mouse

[Lee]

Max,

I love your truthful "reality of today"....you are proof positive that attitude is everything...and faith in something bigger than us.....we are blessed to have you giving us hope and encouragement for the time when others will be in post.

Blessings to you,

Lee

[Pancho and Lefty]

Well,

Here I am. . . and there you are. Looks like we're all in this together. Missy my dear, I think I may be employable. .  but I'm sure as hell not "marketable" and that seems to be the hot ticket these days. Furthermore, I'm not sure I want market myself. . . anyway I'm too old to stand on a street corner and drum up any trade. 

Lee my dear: sometimes the real things in life are clear. . . sometimes not. I'll take truth/reality anytime I can get it. . . other times I get by with Faith.

Betty, thanks for the kind thoughts. It used to be said that heroes appear only when they are absolutely essential to continue living. There's one in each of us. 

Well, tomorrow will be 7 wks post tx for me. Things are coming back around. I've set some fitness goals and met them. I've set some 'fun' goals and am meeting some of them, too. All the physical stuff is coming back very nicely. Truth really is. . . after tx I'm not too sure how much sanity I had before I started the whole deal. I could be perfectly sane. . . or a lunatic. . . I can't be sure right at this moment. I guess it will matter less as time goes by. I'm ok. . . you're ok. . . don't let's forget that. 

God Bless Everyone

Max

PS I started this thread when I was too confused to find 'post tx' in the 'friends' folder. Anyone else confused or anyone at all is welcome to join the party.

[Hank's mom]

Fred -

One man's reality is another's total confusion and madness - this sure ain't for the wrapped tight crowd - imagine trying to control day to day flights of, er, fancy. I tend to paper my world with post its - then I can't find my glasses - oh well. Keep up the physical stuff - release those endorphins and keep smiling.

To quote my favorite bumper sticker - I'm schizophrenic and so am I.

Employable - I've chosen to be self-employed - that way my boss is almost always on the same page as me.) See above bumper sticker quote.)

Susie

Susie

[negative1]

Susie.....

 

[Pancho and Lefty]

Friends,

At the close of the day, it will be 10 wks post tx.
FYI: the sun sensitive effect seems to have faded. During tx I burned when I usually tanned. I'm getting some color back these days.
The dry mouth and lips seems to have abated. . . one reason is that I stay clear of salty foods. I'm seeing less hair lying around.

My mind isn't completely clear. One event that happened recently was not being able to get a cycling shoe with ratcheting buckle off my foot. I did the right one without thinking. . . the left one would not come. . . I couldn't figure out how to unlock it. . .had to pry it off my foot. I put it in my right hand and unhooked the buckle. I've been wearing the same brand shoes for about 15 years.

I've come to feel redundant here on the forum. I also engage in political or procedural debate when that's not really why I came here. FWIW, I may not be the only one who feels like a 'misfit.' I'm just the one with the big mouth.  That means that my problems. . . whether they involve tx or hepC or whatever. . .  are not unique. I would encourage the leaders of the forum to ask how this board might become less alien to those of us who have finished tx. Life ain't the same post. . .. anybody who says it is is laboring under some serious illusions. I do realize that by myself I'm really not important to the contemporary world, but as a group the people who have undergone the ordeal are. 

Anyway, life goes on around me. There are people in my life with more serious problems than my hep and getting SVR. My mom can't drive and my sister was told emphatically (again) that she may not drive. I'm being required to think about them first. In a way it will be emancipating. I'm going to relocate so I can do what I can for them.

Many happy returns to everyone. . . as per usual no exceptions

PS Earl or anybody else. . . this may need to be relocated to the rant folder. Do your duty. 

 

[MissyMouse]

Max,

I think the best suggestion I can give you about how not to feel like an alien once you have finished treatment is to remember that you have a lot to offer those that come behind you.  I have so much admiration for you, Betty W. and Jody13.  Let's face it, all of ya'll are a little older than most of us and all of ya'll at your ages have taken a different and interesting paths when it comes to your hep C.   So yep, you all  have a lot to offer.

I did have a period where I was post treatment and honestly never felt like an alien.  I felt like I had a something to offer those that attempted treatment behind me.   However, you are not alone in feeling alien, I know that Betty W. often feels that way because she was in a position where she was able to choose not to treat, Katnyerhat feels that way because she can't do tx, and there are many others.   Again, I just want to stress that everyone here has so much to offer from so many different prospectives.

Those brain fog periods will probably come and go for a while.  10 wks post treatment really is not a long time.  You may feel better physically most of the time by now but there are still going to be days when your body and your minds says "what they heck".  I was off treatment 7 months between my first and second rounds of treatment and even after 7 months I hadn't had the time to fully recover.

Hope this help makes you feel a little less alien 'cause you are tops in my book.

Mouse

[Betty W.]

Max, think about this, One day I might have to at least try treatment...I really do depend on your expertise...You can make things easier for me to understand...You have a GREAT deal of KNOWLEDGE.....that I and others may need !!!
Please stick around. I admire you so much. you have helped me with a couple of things, and I learned a lot with your help. I thank you for keeping me straight !!!
You are tops on my list too. don't ever forget that !
Love you bunches, Betty

[Mongo]

Friends,

At the close of the day, it will be 10 wks post tx.
FYI: the sun sensitive effect seems to have faded. During tx I burned when I usually tanned. I'm getting some color back these days.
The dry mouth and lips seems to have abated. . . one reason is that I stay clear of salty foods. I'm seeing less hair lying around.

My mind isn't completely clear. One event that happened recently was not being able to get a cycling shoe with ratcheting buckle off my foot. I did the right one without thinking. . . the left one would not come. . . I couldn't figure out how to unlock it. . .had to pry it off my foot. I put it in my right hand and unhooked the buckle. I've been wearing the same brand shoes for about 15 years.

I've come to feel redundant here on the forum. I also engage in political or procedural debate when that's not really why I came here. FWIW, I may not be the only one who feels like a 'misfit.' I'm just the one with the big mouth.  That means that my problems. . . whether they involve tx or hepC or whatever. . .  are not unique. I would encourage the leaders of the forum to ask how this board might become less alien to those of us who have finished tx. Life ain't the same post. . .. anybody who says it is is laboring under some serious illusions. I do realize that by myself I'm really not important to the contemporary world, but as a group the people who have undergone the ordeal are. 

Anyway, life goes on around me. There are people in my life with more serious problems than my hep and getting SVR. My mom can't drive and my sister was told emphatically (again) that she may not drive. I'm being required to think about them first. In a way it will be emancipating. I'm going to relocate so I can do what I can for them.

Many happy returns to everyone. . . as per usual no exceptions

PS Earl or anybody else. . . this may need to be relocated to the rant folder. Do your duty. 

 

...And let's not forget that you have been a good and trusted friend.

I am an alien. 
I am a misfit. 
I am a human with HCV in my life. 
When my "Normal Suit" is fitting correctly,
I blend right in with mainstream society. 
But all too often,
I find my disguise to be a little "untucked" here or there. 
..And people "point" with their eyes.

So off I go.  So off I go.

I land my self right here when it all gets too mad "out there".

And instantly,

I am not an alien.
I am not a misfit.
I am simply human.

I am resiliant. 
I can tolerate great stresses and pressures,
And not explode.
And not come untucked or undone.

I can love without words or actions or deeds,

And I can have HCV in my life.