Trying to find some humor with myself

Well tonight is week 36. I officially look like a bald pie crust!  No hair just bits and pieces here and there. My skin
is so dry and the crust on my skin is so thick I wonder if this will go away after tx? Its beyond the wildest of imagination that a person could have the skin of a crocodile. I have lost more hair this month I feel like I look like ET.
Just very strange....my blood has been holding still so far in the 10.5-10.8 range so thats the good news. Other than Riba Rage alot, skin problems, hair loss, and relentless fatigue its been uneventful thank goodness. Just feeling now
very toxic like Ive been put in the microwave and coooked from the inside out! It been a ride I will truly NEVER forget and has taught me lessons I would have never learned otherwise.
I have enough Pegasys to do 52 weeks doc said I could. Havent decided 48 or 52. We shall see.
Have a decent day everyone and let all the prayers continue for Nck.
Im praying constantly.

Charm

[Texas714]

Week 22 for me...and I am amazed at the hair I've lost...I can't believe I have enough left to cover my head...I was looking at the dry skin on my arms this morning...I didn't know skin could get this dry!  :-)  I'm not complaining...I'm proud I can do tx.  But you're right, what a trip!  To tell the truth...I'll be scared when it's over...that's what I'm dreading.
Good Luck to you...maybe some of this will slow down soon.

[Xenigma]

I just did #48 last night.  I'm done with the shots and now just have to finish the Riba
til Wed of next week.  You can see the light at the end of the tunnel Charm!!  The last couple, three months went by slow for me.  I started counting down my shots instead of just counting how many I've done.
I went across the alley on wed. to spend a couple of days
away from here in Naples.  I couldn't wait to get home. (I'm scared to take my last shot and stop tx so insstead of relaxing I was stressed)  I spent some time walking the beach, looking for shells, (I think I got them all in the last 25 years I've gone over there  LOL.)  
Anyway, I must say Palmers coco butter did the best for my dry spots as did baby oil and aquafor after my showers.  I did not care for the gold bond (green bottle)
The palmers worked better.  I lost 40-50 percent of the volume of my hair but it is still long.  The top looks like a rooster.  It'll all grow back.  I just keep it in a bun or a ponytail.
Doc told me not to cut it short and I was glad I listened to him.
You gotta remember, we've been on the meds for a year, it's gonna take time for things to get back to normal (whatever that is-it's been so long I can't remember)

All will turn out OK, your almost done!!
Feel better...
enigma

[Xenigma]

BTW- The dry skin you mention...

My skin is so dry and the crust on my skin is so thick I wonder if this will go away after tx? Its beyond the wildest of imagination that a person could have the skin of a crocodile.

...sounds like my plaque psoriasis from tx. Were you dx'd with that?

[Xenigma]

To tell the truth...I'll be scared when it's over...that's what I'm dreading. . .

I am too, especially after taking my 48th shot last night.  Now it's out of our hands.

As Bill told me once-The interferon is like our security blanket and boy how right he is.

Whatever will be will be, we did all we could and hope the outcome will be favorable for us all...
enigma

[sldb]

I extended tx. lost a ton of hair and had extremely dry skin.   neutragena works pretty well on the skin that is crocidileish,  i used loufa sponges on those areas. My hair took a long time to get back to normal,almost 2yrs. the waves are coming back and thickness is almost back to normal.  You appear to be approaching the end of the line, if u decide to extend, and you are healthy enough, its better than retreating.  Also try putting powdered milk in a hot tub it softens the skin.  Good luck...Leah  P.S. The long lashes tx. gave me has stayed, no more mascara.  

[medicmommy]

It's so weird...I know what you mean...it seems like my body had been more or less holding it's own until this last 6 weeks of txing...And now, I too am experiencing that "toxic" feeling, like, as each day goes by, the level is slowly increasing...I only have a little over 2 weeks to go now, but the sides have suddenly increased...the hair is falling out faster, the fatigue is back (my HGB hangs around 9.8-10.5), and I keep getting the stuff I had when I first started (eg. nausea, aches, bad brain fog, dry mouth and skin)...I'm not as bad as you, but I can't help but wonder if I'd be if I were at the 36 week mark too...(I'm only doing 24 weeks...) Gawd I can hardly wait to be done and detox this uck from my body!!!!
My Naturopath, who has managed mostly cancer patients on interferon, explained that the txing kind of cripples the body's moisturizing system...As the medication levels build, a theory is, the nervous impulses and blood supply are slowed to the fatty layer of the skin (which  contains your sweat glands and hair follicles). If your sweat glands aren't supplying your skin with a constant oil supply, it dries out...If your hair follicles don't have a good blood supply, they produce weak hairs which fall out readily...
It can also be worsened if you have a minor histamine response ( wide-spread fine rash, itching, deeper tissue inflammation (looks like little bubbles trying to come to the skin surface -seen first on the hands, usually)..-Hmmm, sounds a bit like riba rash, huh?) The salivary glands and vaginal lubrication may also be affected, creating a decrease in fluids and upsetting the natural balance of "flora" (eg. good/bad bacteria/ yeast levels)...This commonly leads to thrush (yeast infection)...
Geeze, there I go, rambling again...Anyhow, his best solutions were drink LOTS of water, exercise when you can (to get the circulation going and to pump out the lymph glands), keep a supply of healthy oils (nuts, meats, cold-pressed oils), supplemental minerals, and vitamins in your diet, use a quality shampoo and conditioner (I've been using S-Factor "Serious" conditioner 1-2 X/ week...it seems to keep my scalp and hair moisturized and keeps my hair from getting brittle and breaking off...-many heppers use Nioxin for people of color with some success..) I also use Aveeno after bath body oil...it seems to give the best relief of dry skin for me... And listen to your body...If you need rest, then try to rest...if you have a craving, your body is trying to tell you it needs something... Whew. Hope this helps a little...It's awful to feel so poorly for so long..(I had a brief 2 week "teaser" where my HGB actually went from 9.8 to 10.8...I felt like I could take on the world! (Well, at least clean my entire house at once!) Imagine what a normal HGB would feel like! :)  Hang in there...Your end isn't too far off...(((((((((((((((((((((((((HUGZ))))))))))))))))))))))                                  ~Melinda

[Texas714]

Thanks for that...It's good to know others have the same feelings I do...even if they don't always make sense to me.

[geterdone]

LOL! Charm,

A quick solution, remove all mirrors in the last days, lol.

Yup, I would say that you are fully saturated to the max and in overload. I had experienced similar hair and skin sx’s in the last 12 weeks of treatment and on top of the riba rash I had these dry patches of skin all over about the size of a dime. The hair? although it did not fall completely out it did get very thin and did some strange things and then went completely flat, man I looked very old, brittle and frail that even shocked me when looking at pictures, kind a like when I stuck my foot in my mouth when making a comment to deppery towards the end of her treatment or at least tried to back track from the comment, lol. I am almost at the 6 month mark and hair is back to normal rash is somewhat gone and dry patches have disappeared. The only thing that still remains is the afternoon fatigue but attribute that to, cringe, getting older and getting up early. I will say the tapering off the meds for the most part has really helped but have nothing personal to compare it to other than the markers when first dosing up to maxc. The only persistent remnants of the treatment was and is the continuation of bacterial bronchitis and lung infections for which I am on my 8th round of antibiotics 28k mg and hopefully the last but I said that just 3 weeks ago on round 7 other than that the only other lingering effect of my journey left me with were the accelerated effects of my predisposed issues before treatment which are a cataract that is really affecting my vision and more hearing loss, udder than that I’m good, for I rally with the monkey rather than the monkey rallying on me, lol.

Charm, it’s just before the dawn and your cloudy days are numbered and then you’ll have sunshine even on a cloudy day… Hang tough! Lady you made it.

jasper

[charm27]

Thanks everyone for all you said. This tx is very brutal and the best medicine for me was  and is to be alone. The rage is out of the ballpark.

Soon it will lbe a memory.
Be patient with yourself everyone in the beginning all is fine around week 20 and on  I wouldnt want anyone in my house with me in this shape.

So just do the best you can and hopefully it wont be that bad.
I got lucky too, no weight loss, no sicknesses , no infection, no rescue drugs.
Just rage, hair and skin issues, ears and scalp.The mood swings are out of control with th increase of A/D's but Im getting use to be a *****!!

[rita863]

Charm,

I know what you mean.  I am at week 30.  Blood levels are very low but not on procroit or neuprogen yet.  The hair loss has lessened the last couple of weeks.  But the rash and the scabs, ugh its disgusting.  I am fully dressed at work, Pants socks, long sleeves because it so disgusting.  i have scabs all over of black and blues...I am just a wonderful site.

I know the feeling of just wanting to be alone.  I also wonder if I have put myself in this, and will i come out of it at the end of tx.  I am used to my routine, i work,, come home my husband is working so i eat, shower and go to bed.  I dont really want to be with anyone, my back and chest and big site reactions on my arms and legs.  I also have alot black and blues all over.


i am wondering if i will be able to go back to my normal life, i am kinda used to what i have been doing for the past 30 weeks, i am alone most of time and i dont want to be with people.  i am used to my routine. work, eat and sleep.  and never see anyone if i can help.  i go to bed before my husband comes home.  will i ever be the same?

just wondering!!!

and you are right this something we will never forget!

Hugs to you

peace
rita

[charm27]

I have no big site reactions but the scabs in my head and with no hair doesnt feel very good never mind the way it looks. And My ears have been bleeding still with all the cremes and meds. You just have to realize that whatever sx you have most of the time they are going to get worse. ANd boy have they.
now just waiting for that light at the end of the tunnel.
Cause I truly lost myself this year beweeen, docs, being sick , labs, syringes, no life.
Hopefully we wll return back to us but it will takesome time to crawl back out.
What an experiece I could NEVER forget.
I have learned alot though......so thats the flipside.
Take care Rita, Fel Well.

[Lady Lauri]

Charm...I love Geterdones idea...remove all mirrors, lol!

I was very lucky in the hair dept. but sure it's cause I had so much. I did loose a lot, yet few could tell. Bathes were so helpful for my muscles and dry skin...put ANYTHING moisturizing in it! Than I'd cover in baby oil while still all wet (still do).
I also agree that a big part of my handling tx, the mental area's was the luxury of being alone as much as I needed. Tx and the real world don't mix well! Social life....was going to Publix and buying TP and not cussing out a cashier!
And I sooo agree on the being scared to quit, while soooo waiting for and longing for it to be over. I still have 4 shots in my fridge! (near 6mths. post!). As if I'm going to do one now and than just to be sure, lol.

Hang in there, you'll be all beautiful again soon, your almost there.

Xenigma.......congratulations! Your done !! :)

SVR wishes to you all (and me too in August!!)

LL

[charm27]

Havent  looked in mirrors! Its more the way I feel than look. I feel hideous! Really uncomfortable at this point. Cant imagine making it thru but I will. I just feel so fried!
which I know is normal after so many months.

To all you 72 weekers I give you so much credit..........I really do. Your all amazing.
Hoping to get to 52!

Grinding down,,,,,,,,,,,,,.......

[Xenigma]

Thanks Lady!!  and congratulations!  Beautiful baby  :-))

Charm-I was just reading my journal here at home and I don't know how many of my entries ended with --I'm so exhausted-I'm not gonna make it to 48 weeks---or
I'm so tired I'm gonna call in sick tomorrow----Well, I only called in sick once and I made it to 48.  I look like shite and yet I still see customers and drive Broward each day.

You can do it, you will do it!!
All will be OK....
enigma

[l-horn]

Look at it this way. You're gonna be a big hit during halloween.

[ladywhy]

It's good to hear from you....missed your humor.