I don't think you're crazy - that's the first thing I want to make clear. The second thing is the catch 22 that you are describing. We alert those around us to the possibility that we may be acting a little weird because of the meds and then every time there is a disagreement we hear that we are responding inappropriately because of the meds. And at times they may be right but probably not all the time. So how do we separate out those times when we are acting appropriately from those riba moments we all will have? Hell if I know the answer to that question! I have been struggling with that for a while now. Karen recently changed her birth control pill and so I used that back on her. She wasn't very ammused but at least she knew what it felt like when every "discussion" was attributed to her med change. Now we sort of have it worked out and, then again, I've been on this stuff for almost 4 years less about 7 months so we have had a lot of practice. I only know that it takes a lot of work and understanding to get through this stuff. The fall out is considerable. Mood changes, temper tantrums, lack of sex drive and fatigue .... and oh yea, fear too. My best advice is to try hard to avoid conflicts but when the arise keep as clam as you can and if you forget what was siad just ask for clarification. If your partner is fair and kind he'll indulge your short term memory loss and the confusion that goes with it. After all, this shouldn't be a contest but a search for cooperation and mutual support. That's all I have. Good luck and try hard not to sweat the small stuff - if you can. I know that's hard. Take it day by day and moment by moment and strive not to borrow trouble. There's enough of that already. Good luck. Mike
No, you are not crazy. The exact same thing happens to me. Arguments start and just like you, about halfway through I can't even remember what the heck we're arguing about or why it was so important. The next thing I hear is "it's the medicine" etc. I know it is the medicine but why rub it in my face? Right? I don't "like" having HCV or taking this medicine but I wouldn't "like" ESLD either.
Yes, the medication makes us act crazy at times. There is no doubt about that. It is very, very hard on our families and I am sure they are all scared of what will happen, just like we are. They go through this with us, they don't experience the side effects we do but they do get hit with our peginterferon/ribavarin outbursts.
When I am done with this I am going to propose that anything, any issue, that came up during treatment, be tossed into the trash can and buried with HCV.
What you're going through it probably pretty common for married couples where one is going through treatment. Imagine a house with two on treatment at the same time.
I totally agree with all the above posts. Life is hard enough on you while on tx. The next time he YELLS @ you, put him a xanax in his drink!!!! AND I'M NOT EVEN KIDDING.....that will calm HIM down!!! Hang in there.....it gets worse...LOL (only kidding). We love ya gal, Cindee
Okay people, the time draws nearer for me and I am really scred to do the tx. I have 3 kids under the age of 5, and well, I really have 4 kids... my oldest is 36 and we've been married for 8 years and we are both hot headed... so I am afraid to be a total b*tch all the time. I work hard to keep my cool for my childrens sake, and I have gotten really good at it. My dr said he would treat the depression, if it occurs, but not the edginess. I think that is BS. Any words of wisdom? Any chance that I won't have ribarage as a sx? La Loca
Are you crazy!? Apperantly you're not alone.Are you scared,?is your husband scared, doya think?, ok , now throw in some real nasty drugs , not much sleep ,aches pain,ton of other ****,did I mention your on a merry -go-round ,and oh yeah, we have to let go and have some one else be in charge 'cause we can't make decisions and they maybe never had to,and everyones scared!!!Sounds crazy eh,but you're not alone... cause that was my house.Take care,Sue
The funny part is that Karen was affected by the pill change - it's a hormone thing - and at times I did think it was the meds that had her acting strange. But I did overdo it just to let her see what it felt like. I think she realized the frustration of having everything attributed to meds and she seemed to ease up on that a bit. We can still get argumentative but I don't hear " it's the meds " as much as before. Really we're doing pretty well all things considered and I am lucky to have a woman so supportive and patient. Like I said it's been a long time on this stuff and she's stuck with me throughout not only the surgery but all the treatment I've done. And right after the transplant the big anti rejection doses really had me acting strange - even strange by the tx meaning of strange. Mike
you need to just try to get thru each day. dont worry about the long term effects of this meds now on anything. just try to take care of yourself and tell your husband you dont feel like arguing about things you cant even remember the details about. if you dont feel like talking he will have to accept it. my husband had a hard time at first but as time wore on and he saw how hard the meds were on me he got better. he needs to look for ways to help out the situation so you can get your life back. but if he cant then hopefully you can not worry about it now while you are treating. just carry on the best you can not trying to figure things out till you are better. refuse to be blamed for anything. just say "im sorry" im not myself and trying to do the best i can.. ha easy for me to say! you are in my thougts and prayers.
hormones, huh? I also started the "patch" after starting TX and can you imagine the combo rage? I was road raging, express line raging, hypersensitive, negative, antagoninzing, etc. etc.
It strangely eased off and I seem more calm and tolerant for the last two months (around week 27 or 28).
Hang in there ms. star, follow up on seeking family interven-tion from a minister or counselor.
We, as women, are expected to follow the Female Code of Goodness ( from the "Woman's Body"). It includes being unselfish and of service, make relationships work and be competent without complains; these account for a woman to give and give in often. As we are not as tolerant on TX, and taking **** is not as easy, those used to the other compliant behavior, resent the change. Of course it is not all YOUR responsibility, relationships are never the doing or undoing of ONE person.
One of the first things my doc told me is "Don't make any important decisions while you're on tx." That was hard; so was putting myself totally in my husband's hands. It did mean trying to ignore some stuff that bothered me, because I would feel the steam building up, and I knew if I let it bother me, I would blow.
Once I thoughtlessly made a stupid generalization, only to find it might have been really hurtful to someone standing next to me. I apologized to her; she said she didn't know what for. I tried to explain, but she stopped me and said, no one can hurt her feelings because she chooses not to let things hurt her feelings; that it's the other person's problem. If you choose not to be insulted, insults won't hurt you, etc. I've tried hard to use this "water off my back" approach since then, and my stress level - and my BP - have been lower since then.
Oh, well, I hope something in that was relevant... What were we discussing? Oh, yes, there is an end to tx, and a life after.
after reading yopur post and the rest of the posts i went back and reread your post.
"I WOULD TOLERATE MANY THINGS" , why? relationships are built
on mutual trust, need, love, support, and all the emotions that make us humans. so why tolerate many things? instead of tolerate it should be "we compromised on many things", are you the only one that has to give in and tolerate things?
"DOESN'T MATTER IF I HAVE A VALID POINT" WHY? are you less than your husband? do his valid points mean more than your valid points? if so why?
"NOT TOLERATING THE BULL HAS HUSBAND FREAKED OUT" why should you have to tolerate the bul, does he tolerate your bull?
why is he freaked out that you chose not to tolerate the bull?
is he afraid of losing controle of you? are these controle issues to begin with?
"MY HUSBAND KEEPS YELLING" does yelling realy solve anything?
would he yell if you were in a hospital recieving the meds instead of at home? does he do this when his friends, family are around? would he react different if he knew the world was watching him yell at a person that is very sick?
"HE USES THAT TO THROW THE BLAME AT ME" why must there be blame?
is he so perfect that he never has anything to accept the blame for? blaming does not solve any problems, and in fact can cause even more as others scramble to cast the first blame.
"POWER WEAPON FOR MY HUSBAND TO USE AGAINST ME" why does anyone that loves you need a weapon and specialy a power weapon to use against you?
some of this may be indead the meds effecting your perception.
some of this may be fear, perhaps your husband is afraid of losing you to the disease and does not know how to deal with the fear( acting out and being angry are common ways some people deal with unadressed fear).
from reading your post though i feal that this is realy about CONTROLE. not knowing your husband i ask you.
if he feels that you are not in controle of your self, due to meds or the disease, would he be acting this way to let you know that its ok to be out of controle as he will take over controle and keep you safe? i dont know only you would know the answer to this problem.
it is very important to matain a positive attitude during any illiness, many studies have shown the importance of this.
it does not sound from your post that this is happening at your house. perhaps it is time to seek outside professional help?
if not for the both of you then at least for you to resolve the issue of " AM I CRAZY" I DONT THINK YOU ARE! but then i am here and you are there. again maybe you are seeing things in a different light. i'm not sure about all the otheres here but once again i have had to confront my mortality in this disease.
in confronting the very real possibility that this disease could kill me i have looked at what is important and not important in my life, i have looked at my wife with a slightly different view as i approach treatment. we evaluate our resources in our loved ones, will they be strong enough to help us through this, can they handle all the litle things we used to handle but can no longer. will they can they be the ROCK to which we can cling as we feel as if we are drowning? i have my answers to these questions.
do you star have yours? i dont know if this ramblin post helps but i hope in some small way it does.
AND ALWAYS REMBER WE YOUR OTHER FAMILY HERE IN HEPPERLAND ARE ALWAYS HERE FOR YOU.
in love and best wishes for you
Thank you each and everyone for your support. I can always count on you all to bring me back in step. I have read ech post and there are a lot of wise encouraging things said. I have good news in spite of the stress at home. My Dr. called my office today and said that my 24 wk test, taken a week early, was still "UNDETECTABLE". It's is kind of ironic that on this day I felt as if the treatment was not only killing the dragon but also my marriage. I will keep working on my outburst and try to be nicer, if that is even possible on this s***. Again thank you everyone for being the support I need, withoout all of you things would be really hard and lonely too. It's just that no matter how much a person cares or tries to understand, THEY CAN NOT UNLESS THEY HAVE TAKEN THIS JUNK, (oh I mean life safing meds. that's right. Well I'm going to leave work and head home. Pray that I can be loving and kind and ESPECIALLY forgiving. Love you all!
Star....Crazy??...Of COURSE you are! We ALL are when we're on these meds! SO WHAT? As long as you realize it then you can deal with it. I was absolutely nuts on that stuff. But..I "knew" it. I let my wife make ALL the important "life" decisions then. I would rage and ***** about a lot of what she did, but she just ignored my "moments" and went right on. Then I would feel guilty and apologize profusely and she would just smile, and nod, and all would be right with the world.....until the next day when it would start all over again. I KNEW I was not thinking straight. I couldn't remember my cats name for the entire year for Gods sake! I kept running out of gas cuz I forgot to look at the gas guage in the car! I was NOT normal! Neither are you. TRY.......real hard...to just let your hubby handle it all until you are done. I know....you will NOT agree with everything he does or how he does it.....but you are just not able to make many "great" decisions right now. You can "fix" all he screws up after you are done. You do NOT need the extra stress right now. Just try to concentrate on remembering the names of ALL your family members...THAT is accomplishment enough for you right now.
Cuteus........CODE?? There is a CODE OF GOODNESS for women??? HAHAHAHAHAHA That is WAY too much for me to handle! Do any other women know about this? NO women I know do. If I actually told my wife that she was supposed to be.....unselfish and of service, make relationships work and be competent without complains; these account for a woman to give and give in often.....AND then made ANY reference to..."compliant behavior"....she would not only laugh at me...she might possibly SHOOT ME! HAHAHAHAHAHA After being married for something like 27 years now, I don't think she is ready for THAT big of a change. Besides...she likes it when I BEG.
I am so sorry that you are going through all of this right now. You definately ARE NOT CRAZY...these meds are just hard to take sometimes. I agree with those who said that you need to think about YOU right now. Being a mom and grandma...I know that it is really hard to do at times. But you need to get through the TX no matter what. And your husband needs to care enough about you to "back off", or even better... to try being more supportive. This is hard for our spouses...there worlds are turned upside down as well. Like us...their scared, but I think it is really hard for them to understand what we are feeling. I would also try to pick and choose my battles. Some things are just not that important compared to how you feel on tx now...so try to let those things go. When there are things that are really bothering you...try to DISCUSS..NOT ARGUE..these things with your hubbie or kids. If it escalates into an arguement...try to walk away...your body and mind does not need the stress right now. As Maj said...wait until after tx to make any serious decisions.
You have gotten alot of good advice from my fellow heppers here...maybe you should print it off and let your husband read them.....it might help. Someone posted a letter a long time ago that I saved....this might be helpful too...
WHEN FAMILY MEMBERS JUST CAN'T UNDERSTAND
There are probably few things in life that are more hurtful
than being rejected by family members when we need them most.
Unfortunately, many patients find that a diagnosis of hepatitis C
not only causes friends to scatter, but also contributes to some
families literally splitting apart. Hep C is a disease that no one
truly understands, nor do we have much control over what it does to
us. Sure, we can learn to live with it and alleviate some of its
symptoms, but we still have no control over how others see us or how
they'll act towards us. Hepatitis C is a disease with so much
misleading information that it leaves us wide open to criticism from
family members who either can't or won't try to understand. Because
we "don't look sick" it's easy for them to forget that we are. Pain
and discomfort aren't always obvious on the surface, but this sure
doesn't mean that they aren't real.
Progressed hepatitis C causes changes in temperament and
studies have shown that it does have a negative effect on thought
processes and behavior. It's not unusual to be a bit anti-social
when a person isn't feeling well, but with healthy folks, it's
usually temporary and most people are understanding With those of
us who have hepatitis C and are symptomatic though, it's an ongoing
struggle, and one that can easily mimic just about every negative
personality trait that a person could ever have. Since the liver
plays such an important role in energy production, it can make a
person appear lazy since we tire easily and often require breaks to
rest. This fatigue can then contribute to irritability and short-
temperedness which doesn't exactly endear us to family members or
anyone else. These negative traits are often blown out of proportion
in the minds of loved ones and it's not uncommon for them to think
we're making excuses for our behavior because we don't appear sick
outwardly. Many of us find ourselves written off by our families
as "being hard to get along with" or "difficult" regardless of how
hard we may try to show them otherwise. Don't be surprised if you
find yourself excluded from family activities either. It's
unfortunate, but it happens all the time and families can find ways
to justify this sort of thing by blaming it on those of us who are
It's no secret that hep C definitely contributes to this
sort of problem in many infected individuals, and most of us are
very aware that we're not always the easiest folks to get along with
when we're feeling poorly. It all boils down to lack of knowledge
about the disease, but we can't make others learn about something
that they don't want to, so we have to try to find other ways to
either co-exist or separate ourselves from it all. Health is far too
important to allow family problems to destroy and toxic people are
detrimental to those who are sick. Outward appearances often belie
what's truly going on inside of us and no one can know how we feel
just by looking at us. Only another patient or their caretaker can
know how much most of us struggle every day of our lives to be
likeable, amicable, and as normal as this dreadful disease will
allow us to be. We need the love of our families more than almost
anything else in this world, but most of them never realize how
tempting it is to want to give up the fight for life and let nature
just take it's course when we realize that we don't have their
Some family members harbor resentment towards those of us
with hepatitis C because they feel that somehow we did something to
deserve it. Of course this is absurd because there is no test
available to determine the source of a person's infection, and it's
wrong to hold such a grudge anyway. Irregardless, it's terribly
hurtful to know that those who are "supposed" to love us would hold
these kinds of feelings towards their own flesh and blood.
Nevertheless, some will accuse us of using our illness to garner
sympathy or to excuse our shortcomings and it's something we have to
get used to.
Many patients we speak to express the fact that they've come
to dread holidays because of knowing that somehow, some way, their
illness will affect what should be a happy and joyous time. It's not
unusual for patients to want to isolate themselves from loved ones
because they feel like "lepers" because of their illness. A display
of unconditional love from family members could go a long way in
alleviating these feelings, but, our loved ones are human too and we
can't expect them to see things quite like we do. After all, if you
never suffered with a potentially fatal disease, how could you know
how it feels?
In spite of how things might appear, we're not making
excuses here folks. These things are very real, and we're not making
anything up just to convince our families or anyone else that we're
worthy of their love. Being resented is a very difficult sentiment
to swallow though, and especially when it comes from our families.
None of us asked to be infected with hepatitis C, and I know
of no one who has the disease who hasn't felt at one time or another
that they've let their families down by getting sick. However this
doesn't give anyone license to belittle us or make us feel inferior
because of it. We know when we're feeling less than sociable and we
need desperately for our loved ones to understand and not make more
of an issue out of it than it already is. No one really enjoys being
around people who are feeling poorly and we're well aware of this
too. What we don't need though, is to be constantly reminded that
our disease sometimes causes us to be less than cordial, because
it's something we struggle with constantly.
There are many stages of this disease and degrees of
severity, so just because one person with hep C may not have
symptoms doesn't mean that another patient doesn't. Hepatitis C is a
very complex disease with many different strains, and no two people
experience exactly the same thing. We need our families to know that
we hate this disease and what it does to us more than anyone else
ever could. We're also very cognizant of the fact that it affects
not only us, but everyone around us. For this we can only apologize
and try our best to be as pleasant as possible when we're around.
I sincerely hope that those reading this who are healthy
will forgive us when we're "less than" we'd like to be. We're aware,
we're fighting for our lives, and we're doing the very best that we
can. Now if we could only make our loved ones understand. . . .
Sorry this is so long, hang in there honey,,,,YOU ARE WORTH IT!!!
I know what ya mean about giving someone who hasn't had Hep C, a dose of Our meds. I'd love to do that to the receptionist @ head nurse at my liver doc's office. My doctor is GREAT, but when I called his office and had a question...can you believe the recpt. had the nerve to say..."you shouldn't be feeling so bad, YOU'RE CURED"!!!! I haven't even had a blood test yet since being almost 4 months post tx. (on the 6th of March) Anyway I'm calling this coming Monday ( didn't call the past 2 days cuz' we have 18 inches of snow!) to "try" to get an appt. w/ him. If that know it all recpt. says why do you need to see him? And I'm sure she will.....all heck might break loose!!!!!!! But I WILL get in to see him, if I have to drive that hour and walk right in his office and thru the door, and right back into his office and sit my big butt in HIS chair!!!!! LOL I don't feel good and she just might get the brunt of my anger!!!! I might take a huge snowball with me, and smash it in the recpt. face!!!!!! I'm sure my hubby will get me out of jail....LOL...can't you see it now, go to court...and get charged with assault on a female...with a snowball!!!!! LOL Hope you're feeling good today. Bunches of love to you and your hubby!!!! Cindee
LOL Put a xanax in his drink huh? That thought has never crossed my mind but what a great idea!! LOL Don't know if Starla's hubby would like that though hahahaha Yeah I would like so much to accidentally give my dr a shot hehe Not that I don't like him but alot of times when I am there..I tell him about sides and he looks at me and says no...I never heard of that!! So I have this vision...a shot and a few pills down the throat and then ask him...how ya feeling? huh? I can't hear you! You say stomach ache..hmmm nope thats not one...headache?? nope sorry....hahaha anyways...its a vision huh?
That was wonderful. My husband is on tx and this is the most difficult thing we've ever gone through in our twenty years together. He's on 9/48 and we had a major blow out a week ago. Over something stupid and I can't even remember what started it. I was feeling stressed, overworked and unappreciated is the bottom line.
But we both did some crying and came to a wonderful understanding. This time is about him and getting through this. Nothing will deter from that goal. We fight the dragon, not each other. I have to keep reminding myself of that mission.
Thank you so much, that was just what I needed to hear right about now. yes I do struggle with the guilt a lot. My family needs me, or at least they used too. The not being able to be part of and do my share is very hard for me. I have always been the caretaker my entire life and I like I am really struggling with letting go, maybe even to the point that it is causing more problems. I will try to let go more. You are a good person to be there for your partner when you're needed the most. I feel even worse today after last night. My husband was wonderful last night, he apologized and was just so understanding about how I was feeling. I am very lucky that he doesn't run off while I'm busy freaking out on him and sick. He loves me and will work with me to make things better. Again, thank you everyone for getting me throough yet another battle.
As a wife of man who is on tx, I walk a fine line. The stress is tremendous and changes each day. One day hubby is in control, feels ok, and is able to handle bills, & etc. The next week, I find that "he was going to do it," but forgot.
Of course, at that point he feels much guilt...and I am upset.
So what do I do? I take back over everything and struggle to get it done. Most of the time it does not get done...so I feel guilt, too.
I cannot count on the laundry getting done or even coming home (after a 12 hour day) and finding dinner. Life is very frustrating. My life is unpredictable, unbearable, and uncertain.
So, what do I do?
I just hang on and try my hardest to change daily; I try to adjust to my family's needs. I try so hard to not take away my husband's dignity while I take away his responsibilities.
On the days that he can function, I do my best to accomplish something great. I have learned to take pleasure in the "little" things in life. (You might as well...that is all you might get! LOL)
Many times my hubby rages about the most stupid stuff. This is so unlike him. I have learned to walk softly and talk softly...and not to take it personally. I agree with him, and then do what ever needs to get done. (Including juggling kids, dinners, shopping, scheduling HIS blood work and dr.'s appointments...and making sure he gets there.)
In ways, I have become his "mother" or rather "caretaker." Just as single women with children must figure out a way to manage her household without help, I am doing this, too. Perhaps your hubby needs to not count on you for anything. Then when you Can do something, he will be very pleased.
At first I found myself angry because I could not ever count on hubby to get anything done; however, when I started pretending like he was not here, my attitude changed dramatically. I just did what needed to be done without resentment. Your hubby is probably just feeling anger and resentment because he can't count on you to be consistent right now. Let him know that you will be ok some days and some days you will not. Reassure him that you both will be ok.
I have watched my hubby be hit so hard by a shot that he is unable to function for 2-3 days. I have watched him sleep for two days at a time. I wake him to feed him and give him more pills! (What a gal I am, eh? LOL!)
There are many days that you will wonder if tx is worth it.
There are many days that you will be anti-social and not even like your hubby. LOL! That's normal. These meds mess with your mind and your thought process. I think that you are probably wrestling with guilt, anger, & etc & etc. Because of that...it spirals you into depression because you cannot do anything to improve your situation right now. Perhaps you might consider being a little bit easier on yourself...and accept it instead of fighting it?
Hubby is on his 2nd round. The first 24 weeks he cleared, but the hep came back.
He is doing daily infergen & riba and has just done 24 more weeks. He showed clear at 12 weeks and just tested again yesterday. He has 24 weeks left. He is sick, looks like shi#, and is anti-social. (Who wants to see family or friends with spots all over you face?) I am stressed to the max and tired.
Since I am a very social creature, I hate sitting at home and watching movies, but my life and the children's are centered around hubby's wants and needs right now. We seldom do anything.
There is a goal here.... and a year or two of a roller coaster ride from hell will be worth the outcome. If this does not work, we'll get on again...and again.... and again.... and again for another ride.
Your hubby's wedding vows will be tested to the max. Yours, too!
Are you going crazy?
Ya...probably. LOL! BUT, don't worry about it too much.
Ease up on yourself.
If you need to sleep...then SLEEP, and REST your mind.
Don't waste your life feeling guilty over things you cannot change.
You'll be ok. Just hang on for the ride...it will be over soon, and this part of your life will be just a foggy memory.
When my husband was on treatment, we found that it was not a good time for us to be in conflict and anything we had to resolve between us needed to be postponed.
We also found that it was not a good time for him to be in a role of disciplining children. I had to actively advocate for the kid every now and then and remind my husband that his reactions were over the top due to treatment.
Are you crazy? Maybe for a while. But you also deserve to have respect and consideration for what you are going through and not feel ridiculed for being unable to function at 100%. some TLC is in order here.
I cannot tell whether your concerns are realistic or they are borne from an interferon induced reaction.You make it sound like he is being a bit mean. Is he or are you being a bit overly sensitive...or a little of both, maybe?
Talk to your doctor about your anti-depressants if you are taking them and about taking them if you are not and to your husband about putting off his own stuff until you are in a better place to participate on an equal playing field.
Sure, he has to sacrifice and give in more than he would like, but that's what for better or worse means, in my opinion anyway.
Katch, to tell the truth, I really don't think that "riba rage" has been that big of a problem with me. ( Now, my husband and my kids may dissagree) There have been times that I have gotten totally stressed out (especially trying to pull my daughters wedding together a week ago, Feb 14) but, I don't think that I have really "raged" at anyone. Believe me, I do get worried and freaked about things...but I don't think I really have "yelled" about tooo much. I think that "riba rage" is too often used as an excuse....for some of our words or actions......that has been seen many times between people on this forum. I think it is easier to tolerate here cause we can laugh it off and hopeully not take things tooo personally, cause were are all pretty much in the same boat. DON'T GET ME WRONG..."RIBA RAGE" IS REAL....and many people do experience it....but on diff levels. These drugs affect all of us differently. So don't look for and expect specific sides to happen.....be a "cup is half full" kinda person...don't forget the "power of suggestion" works both ways. Just because you here one of us describing how hard one of our sx is....does not mean that it will be the same for you. Many people here have had some very serious health issues to deal with because this stuff is sooo toxic. But I am here to tell you...that it isn't always ALL bad for everyone. Hey I just took my 39th shot this week....and compared to most here...I am doing great. And it will all be worth it. Sorry this is so long. Hope it helps some. Take care, berlynn
You are probably not going to have to work too hard. Most kids are very resilient and very forgiving.
A suggestion: talk to her sincerely and tell her you are sorry about being grumpy. Just tell her the truth on a four year old's level. Keep it simple.
Tell her that sometimes it hurts and when it hurts you are really grumpy. Let her know that she can take action when you are short tempered and be clear what that action is. Decide in advance so there is no mistaking the action for cheek.
For example you might give her permission to tell you that you are too grumpy when you are. Pick out a book together and sit down with her and read it together when you have been told you are being grumpy. (Robert Munsch has some wonderful ones, "I'll Love you Forever" is a really good one, or" he Paper Bag Princess")
Something like that that gives her a little control over her world and will teach her some good coping strategies.
I am so glad that you are going to definitely see your dr next week!! You have had doubts and not feeling great for awhile and yes...you need some answers! That receptionist!! You should have said...thats right I'm cured and still feeling rotten and that is all the more reason for my dr to see me!! Uggghhhhh!! Hand me a snowball~~ hahahaha This could be fun!! Yes..feeling better today and hubby went back to dr AGAIN LOL yesterday but did get something (fingers crossed) that he said started breaking up in his ears and could actually hear me this morning! LOL He probably enjoyed the last week break of having silence! Ok Lady...You are DEFINITELY in my prayers and I will be waiting to see what dr says!! Love you!!
I too think I am losing my mind. I am a secretarial/organizer at work, (I work out of the home, thank God).
On these meds I feel I am about to blow a gasket, and people who can't get it together are on my last nerve! I have one nerve left and everyone is on it!
I can not tolerate people's stupidity at all!! I keep all these thoughts to myself, but when I get home I start to cry because I can't stand myself.
I have been in treatment for 5 months and things are getting harder and harder, my job requires 100% stability, and I am not stable minded at all.
I was on lexapro, but the pharmacist said to stop taking it if I started to have stomach aches because it could cause stomach bleeding with another medicine I am on, my stomach starting killing me so I stopped taking the lexapro, I can't stand my doctors, so I don't talk to them much because they all act like I am nuts, and I feel the doctors are really ignorant to the side effects of these meds. They literally look at me like I am nuts when I tell them what is going on, and I am on my second Doctor and don't want to have to go through that again (changing doctors). It took me almost three months to get my medicine squared away, and I am actually still working on that!
I am so dizzy, and edgy and then because of my age everyone tells me I am menopausal, which now I am wondering if I am? I wasn't b/4 the tx.
Now I am wondering if it has something to do with hormones.
I really do need help with the mood swings and feelings of being edgy all the time, and I don't have night sweats I have all day long sweats! They are horrible especially in 114 degree weather!!!!! I though I would die, my air conditioning bill is going to kill me, if the Hep C doesn't.
I do believe in God and I do believe without him I would of already lost it completely.
I wish the medical field was more sympathetic with their patents, I feel so isolated from the medical community it is unreal. I often ask myself if they treat cancer patients this way. The Dr. really don't seem to give a hoot if you die or not, my doctor keeps reminding of the new drug that will be out in a year and I should wait and take that, I am already in my 5th month of tx. and I am not going to stop now. I want this stuff out of my body.
My worse side effect is the mood swings and getting people to believe I am sick. Because I am home more often to get better my phone rings off the hook to the point where I want to scream!! I do unplug it and I don't always answer it, but the minute I plug it back in everyone won't leave me alone to get better!
I do a lot for others, and have a hard time saying no, but now I want to yell to top of my lungs, leave me alone so I can have some time to heal. I have even said that to my closest friends and they still call me at all hours of the day. This is what frustrates me, and that is what I said in the beginning, people's stupidity is driving me crazy----Someone please help.
Sleepless in Shady Cove
Hi there. Many of us can really relate to your situation as we have been there, too. Some of us are having a very hard time on tx, some of us have doctors who are not supportive or knowledgable enough about how to treat or help us. So, for many of us we have to educate ourselves, be our own advocate, and find the right person or medical group to help us. I have gone through 2 heptologists, and 4 primary care doctors to get where I am now. And that is treating for 48 weeks with G!b, on Procrit because my RBC dropped into the 8's, I am on Ambien for sleep, and Lexapro for depression. I just finished another crippling bacterial infection which invaded my inner ear making it impossible for me to sit up or walk until it was treated with anitbiotics.
We with Hep C are in a delicate condition and need proactive care to guide and help us along. However, many of the docs don't do that unless asked. I had read from many here about painful mouth sores and bad teeth while treating. I learned of a tooth paste and mouthwash called Biotene that could help with that. Sometimes my tongue gets so inflamed I can't eat or even keep it inside my mouth because all the bumps hit my teeth. So, I use the mouth wash more often and drink more water and it goes away.
So, there are things you can do to help yourself make it through. For me, I have cut off as much social contact as I can telling people I am treating a serious illness and I do not feel well. Funny, when they see me they say I look great. I don't know if they are kidding because I feel like hell, but I don't let that make me feel guilty for disengaging myself for health reasons. I notice that when I overdo, I spent the next few days trying to overcome the stress which my body usually displayes through high fevers and nausea.
Bottom line is this: You have to treat your illness as if it means your very life depended on it. Cut out all the stress, gather a small, but effective support group around you, find a good group of doctors who can help with support meds while you are treating, and stay positive. Low, low stress levels will help you manage your temper and frustration levels much more effectively. My youngest daughter is a great girl, but she is full of drama and negative comments about everyone around her. I cannot be around that so I screen my calls and most times I am lying down when she calls. I know how much of her I can take before I start to blow. You need to guage that in yourself, self-monitor yourself.
Getting well is the goal and the prize and we have to put ourselves first because if we don't we will never be able to give our best to anyone else again. I know it is in you to rise to this challenge and fight for yourself. Although your are venting in your post, there is a determination there also that is pushing you on to find answers. You do not appear to me, a quiter so I would encourage you to take a moment, bow your head, close your eyes, center yourself, and find the strength and determination inside of you to fight the battles necessary so that you can ultimately win the war.
I'll bet that you have been so in the habit of doing for people that they don't really believe that you mean "no" when you say "no". I was like that too. You have to hold your ground. If they ask twice say "no" twice, and the second time they ask, you are allowed to sound annoyed when you answer them. Tell them you are fighting for your life here... this isn't a game, and if they don't care about your life, why should you feel the guilt of not filling their needs? Now is not the time to put your needs second... They are #1 now, and should be until you are SVR.
I was in menopause by your age. Try to find a female gyn and get your hormone levels checked. No sense in adding gas to the flame. Get whatever normalized that you can so you are ONLY dealing with tx. Hopefully that will make life easier for you.
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