Is it just me?

[RichardMEL]

awwww a woman who thinks about me when she's in bed.... now that totally works for me!!! 

Though watch out MM - if you think about me too much you might go blind... oh wait, that already happened to ME!!! 

thanks for the thoughts!!

 

[Wat76]

MM,
I am having a hard time dealing with my situation as well and I am very angry, but my family and friends will not let me sulk.  It is so hard convincing yourself that you will be alright.  I have my ups and downs and some days I want to give up.  I just had surgery for  my fistula and was such a nervous wreck, the doctors knocked me out cold.  It is okay to feel overwhelmed and scared and just not want to deal with the fact that we have a  problem that is changing our lives forever.  Me personally, I am going to try and beat these crazy feelings that I have and everytime i start to feel afraid or frightened I think of my grand children.  I know I will not see all of the finish school or college, but is going to fight to at least see the two oldest.  They are my strength.  I wish you the best and I do believe we all know how you feel because we are all in the same boat.  This website has been a lot of help for me, I have went back and read posts from 2005 on up to get answers to the questions I have and by reading through all the post, I have to be honest and tell you that, this site has helped me a lot.  So many positives along with the negatives and as the old saying goes, This too shall pass.  Not wishing anything bad on anyone else, but there are some who dont have a choice in their care.  The bright side, we have a choice to fight or flight.

[MooseMom]

Wat76, I read the posts you wrote before your surgery, and I saw how frightened you were.  I purposely didn't reply to your post because I didn't want to frighten you.  My fistula surgery went well for all practical purposes, but it WAS just about the worst day of my life and I haven't yet gotten over it.  It was you who I particularly had in mind when I started this thread because I knew that you felt a lot like I did/do.  My surgeon decided he wanted to just give me a shoulder block, but I told the anaesthesiologist that this was a horrible thing for me and that I didn't want anything to do with it, so please just knock me out; thankfully, he did.   My son is mildly autistic, and I don't know if he will ever marry.  I have only the one child; he lives abroad.  My greatest wish in life right now is to have a teddy bear picnic with my granddaughter, but I doubt if grandchildren are in my future.  It's the future that frightens me...it just looks like a big black hole, and I have to start believing in my own strength to make it not so.  If I continue to believe that my future is a black hole, then chances are, it will be.  I know I have the choice on whether to keep fighting or not, and I choose to fight, but I resent having to make such a choice in the first place.  When I read about NxStage and all of the palaver that goes into dialysis, well, it exhausts me just thinking about it.

[Wat76]

MM,

My surgery was a disaster and yes I was so frighten and also the worst day for me.  I could not look at my arm for a couple of days, I did not take the bandage off until five days after the surgery.  I am angry and so overwhelmed thinking about all this and that black hole is looking right back it me.  I spent 24 years in the military, i am a very active person, I am so use to traveling and visiting so many people, take a cruise once a year and likes to swim and just go.  I have been so sick lately and the idea of me not being able to go anywhere without preparation is going to be the hardest thing for me.  I use to pick up and go on a whim or whenever I felt like it, now my life is forever changed.  I am not going to give you any advice as to what you should do because I am trying to figure this out myself, and we all handle things differently.  The future frightens me as well and that is my problem worrying about tomorrow, it is not easy.  I still cry and wish that it was not me. I have PKD and so far one of my daughters have been diagnose with it and she is so positive and continue to try and encourage me, it don't help none.  Nothing helps right now, but hopefully things will change in the future.  My husband is trying to get me to quit work, i will go crazy if I do, i am going to keep pushing until I cant push anymore.  Again, I probably would have ended up seeing a psychiatrist if it was not for this site, i found a lot of my answers to some questions i had on this website and I am glad i found it, the people are real, their situations are real and i am happy i found this site.  I try not to spend my days thinking of whats ahead, but boy it is hard as heck, changing my eating habits were the hardest and i miss the heck out of my lays potato chip and fries, but i let them all go.  For me it is getting easier, i still get angry when i have to go to the doctor as well and end up taking it out on them, but hey they should be use to it.  This is so hard, but It is okay to feel bitter and angry and exhausted. 

[MooseMom]

OMG Wat, are you my clone?   What I hate about the diet is not so much the restrictions but the mere fact that I have to think so much about it.  I've always enjoyed eating nutritious food, but when I'm told that I'm eating too many fruits and vegetables, well, that just weirds me out.  It's so counterintuitive.  Fortunately for me, though, I like a wide variety of food, so if I can't eat my potatoes, I wallow in my basmati rice, and if I can't eat oranges, I eat berries, and I'm happy.  I've truly gotten to the point that I don't like foods that I know can harm me, and I am good about portion control.  Once I start dialysis, I plan to do NxStage for many reasons, one being that the dietary restrictions aren't quite so onerous.

Yes...anger.  Anger that all of this crap has intruded upon our lives.  Yes, we'll do what we have to do to stay alive and reasonably healthy, but it is such an INTRUSION.  I hate that.

Don't let your husband talk you into doing something you don't want to do, like quit work.  Working can be a real lifeline.  But keep an open mind about it.  If it reaches the point that working is becoming a real obstacle, and if you do have the option to quit, then entertain the idea at least, and allow yourself the luxury of developing new interests and grabbing new opportunities.

[seanxl1200c]

I have gotten used to my fistula, it was kinda wierd at first. had to learn not to sleep with my head on that arm because the noise kept me awake. feels sore every now and then, but not all the time. I do feel like a bit of a freak, especially when strangers ask "what the heck happened to your arm!!" And my fiance wonders why I don't like to wear short sleaves.  It will get easier over time. My theory is you can get used to anything if you have to put up with it long enough. lol I have been on in-center hemo for about 3 years.

Sean

[Quickfeet]

My greatest wish in life right now is to have a teddy bear picnic with my granddaughter, but I doubt if grandchildren are in my future

  I hope you get that wish. Watching my daughter carry her teddy around giving it hugs and kisses gets me through the day.

[MooseMom]

My son's childhood was virtually devoid of joy for me.  His autism was a source of such worry and sadness, but more than that, it was really difficult to connect/communicate with him.  I missed out on so much, and CKD prevented me from having another child.  All of that has changed now that he's older (he's in college and is in many ways a typical teen), but his young childhood is something I just missed out on.  And he was the most beautiful little boy you can imagine.  One day I'll learn to use my new scanner and see if I can post a photo of him when he was just a little punkin.

[Quickfeet]

My 5 year old nephew has a form of autism. So I understand a little of what you have gone through. Every now and then he will give my daughter a kiss. It's so cute.

[The Noob]

Morning MooseMom!
heck no, it ain't just you. we are new to all this but i am so grateful for finding this board!
we have not even been able yet to make the transplant interview appt., i confess i am jealous of those who've gotten to the point of even being put on a list.

i will add a few things here, if they help, thats good, if not, thats okay too.

when my 5 children and i are lived alone many years ago on our homestead, we homeschooled and one day a week we went to a long term care facility to volunteer. played checkers, cut coupons, did arts and crafts, put on little shows for the residents. that giving we did made all the difference in my childrens souls. they are all "servants of the heart" today.

when they would occasionally gripe about housework/chores, i would say nothing but load them in the van, drive 2 hours to the city where the ghetto was, drive through it, again saying nothing, then drive home. no more complaints.

over the years we were always found doing some kind of ministry outreach. when we hit one point where we were the poorest we'd gotten, we worked all day at the food pantry for our thanksgiving turkey. just as the pantry was closing, and we were ready to leave with the bird and a bag of food, a young single black mother and her 3 small children came to door to beg for food.there was nothing left, they were turning her away. my children said not a word but took our bird and that one bag of food which was all we had, and gave it to her. i was never so proud. when we got home, on the table sat 6 bags of food. the other volunteers had stopped by my home and left THIER food.

traumatic childhood full of abuse, saved by our grandparents, years as a battered wife, saved by a nasty divorce and years of single parenting, we kept on with our ministry work.
one day i went to work at an ambulance company (paid my way through school with 3 jobs, 4 children at home, homeschooling)..and met my supervisor..and fell in love in 20 minutes. we were married 3 months later.

on that job i saw many things others would have passed out with. the dead and dying, blood, cardiac arrests, gun shots, small children brutalized, you name it, we had it. it didn't take long for me to adjust. it gave me some skills i will always have. the ability to handle trauma and think on my feet comes to mind. when my husband went through this, those skills were my mainstay.

In 5.5 years of marriage, we have faced some hellish events we had to get through. and we did.

my sister has a large family. her 10 year old was DX with ALD 2 years ago. he went from being a happy fat little 8 yr old full of life, to undergoing chemo, bone marrow transplant, is now in wheelchair, deaf and blind, and at any time of the day has 33 IV bags hanging. when i get overwhelmed, i call her.

thing being, for us, it is not so much going through this, but the maze of the medical system we have to deal with, and "you find out who your friends are" thing.

our biggest obstacle right now is dealing with the above. i don't feel self pity, but rather frustration wondering how we will do this long term. i don't know which is worse.
it has been hell fo rmy husband to go from wearing a paramedic uniform one day and saving lives, to being in a hospital gown the next worrying about his own.

you have to do what you have to do, because for us, the alternative is unacceptable.

many hugs to you moosemom, we must be here for eachother because no one else truly understands..

[bette1]

I thought about this a lot and I think that the transition to the idea of dialysis is really hard.  I cried for days.  After you have been on dialysis for awhile you realize that there are some things you can enjoy and you start to accept it.  You never get to like it, you just get used to it.

[MooseMom]

Ah jeez noobie, really, this disease must force your husband to redefine himself (or thinking he has to).  To go from saving lives...and seeing yourself in that light...to being barely able to function...well, it really does a number on your self-image and self-esteem.  And the events you've described...well, they are almost unimaginable.  Your nephew with ALD...how very cruel.  Thank you for your story; everything that you've posted has helped me put things into their proper perspective. Yes, we are certainly here for each other.  I know your husband is used to saving lives.  I don't mean to be trite, but you and your husband can offer real solace and support to other people who are battling like you are.  Perhaps your DH does not feel up to it yet, but if he ever thinks about posting here, I'd bet that there would be several people who would be grateful for anything he could share.

Does your husband plan to pursue a transplant?

And bette1, I'm sure you are right.  Some things you just have to get used to... 

[The Noob]

geesh did it again. erased my post before i could post.
DH and i worked on the rig in 4 counties 911 for 2 years, together. we were a great team.

now today: simply put as i see it: we will not be able to cope how we are long term for these reasons:
doc/clinic/hospital visits too frequent and 2-3 hr drives.
lack of any help with any aspects of this situation other than my son and i doing it all.
running a homestead and many animals out in the boonies in the middle of winter is hard enough, add the care of DH and all the above mentioned visits..
financially we are making..for now, barely.
doing all this and more again through the winter, i don't think i can do it again.

so whats the solution?
well, not being the kidney patient i can look at it a little less emotionally.
figure out the best place for care and shortest TX wait time. move there, even if just temporarily.
set up the best situation for all involved in the long term.

been trying to tell nurse about DH's signs/symptoms for weeks. due to all antibiotics he has over last 2 months, i believe he has developed C-Diff, and has had it for weeks. i was all but crying last clinic trying to get nurse to see this. i got vague answers and "tell the doctor in a month".
in the meantime, DH gets worse, so called on call nurse last night. she advises taking him to ER. he doesn't want to go. i try to tell him if he doesn't make these decisions, a time will come when they are made for him. i hate waiting till crisis time to act on this.

 has 3 sons. all healthy, who have offered to donate. but we first have to make that appt with the TX team. i will make a new appt and get us there if we have to camp in parking lot.
i did get him to read some of the info online today so he has a better understanding.
it seems like every time he's been sick, it was me who spotted it and got it DX and TX.
i'm worn thin would be an understatement..

[MooseMom]

Your DH is lucky to have you.  I would be amazed if he is not suffering from depression (and with good reason).  Ill health will do it to you, and such a sudden and dramatic change to your life would do it, too.  I find it very telling that a man who has spent so much of his life in such a high energy, pro-active job now can't be bothered to look after his own health and try to piece together an action plan and is alive probably only because his wife stays on his butt...well, you see what I mean.  It is hard to be your own advocate when you are sick.  It's hard to manage all of the medical stuff AND purposely add more to it by going through the transplant stuff!

I think you are being very smart in evaluating your circumstances and the obstacles that lie ahead.  Just as people find they might need to relocate for a specific job, you may need to relocate for the same sort of reason.  It's not easy to give up on a dream or on a way of life, but if that way of life is just making things more difficult, and if you have the choice to change, then you may find that making that tough decision now will bring rewards later.  I don't have a great deal of confidence in your DH's medical team...it seems like you have to knock heads together to get anything done.  I am really interested in what you end up choosing what to do and how you arrive at that decision.  In the meantime, you can count on the rest of us to offer support! 

[The Noob]

25 years as paramedic/firefighter..he has seen too much of what "might" happen..

[kitkatz]

Sanguine about things?? ME???  Hahahah! I run around half the time like a chicken with my head cut off.  If it were not for friends and IHD.com I would have lost my mind....oh no there it goes again!  I know I look calm on the outside but inside the hamsters are running rampant.

[MooseMom]

Sanguine about things?? ME???  Hahahah! I run around half the time like a chicken with my head cut off.  If it were not for friends and IHD.com I would have lost my mind....oh no there it goes again!  I know I look calm on the outside but inside the hamsters are running rampant.

Do you ever find that you work really hard to keep things in perspective and to keep your sanity intact, and then suddenly some small thing will just send you into a downward spiral?  I was doing pretty well for about a week, but over the past 2 days, several otherwise unimportant things happened that cumulatively made me feel worthless, forgotten and generally wretched.  Now I feel like I have to rebuild my defenses again, and it is such hard work.  I don't have that much energy to begin with, so trying to constantly distract myself and stay "optimistic" just wears me out.  Do you ever feel like that?

[Bajanne]

Of course we do!  That is why we need our friend and family and IHD family!

[paris]

MooseMom,  your words "feel worthless and forgotten"  rang so true with me.   I know I am not worthless or forgotten, but it feels like that some days and I could never voice this to anyone. They would all be so hurt -- but those two words describe some of my days.   And yes, staying optimistic is a full time job!!    If I don't stay "up" people wonder what is wrong with me.   Duh!   Oh well - at least all of you understand!!

[totosidney]

Moosemom,
Yesterday I went for my check-up with my nephrologist and she told me it was time to consider when I was going to get my fistula.
I told her I'm not ready to think about it, I'm not going to think about, and quit bugging me about it dammit! I refuse at this point it time! I don't care about the consequences right now. I think I will blissfully live in denial for a few more months. I will not go quietly. I will kick and scream the whole way. I don't say that much here on IHD because everyone seems to take it so well, like you said. But I'm terrified.No, you are NOT alone.

Your reaction is natural and common and I had it too. After many years and maybe 6 grafts and fistula operations, I am (perhaps) wiser and (perhaps) less afraid. But what i want to tell you is sooner is better than later for several reasons. 1.You are still fairly strong and you will better tolerate the operation. 2. You may be able to avoid an extra procedure, the Permcath, if you get your access squared away. These are bigger considerations than you can imagine now, but please consider what i have just said...Best wishes, Sid

[natnnnat]

Do you ever find that you work really hard to keep things in perspective and to keep your sanity intact, and then suddenly some small thing will just send you into a downward spiral?  I was doing pretty well for about a week, but over the past 2 days, several otherwise unimportant things happened that cumulatively made me feel worthless, forgotten and generally wretched.  Now I feel like I have to rebuild my defenses again, and it is such hard work.  I don't have that much energy to begin with, so trying to constantly distract myself and stay "optimistic" just wears me out.  Do you ever feel like that?

Yes.   

[kitkatz]

I feel that exact way several times. Sometimes it hits me over little things that have been added to the big things.  I have a morbid sense of humor when I am down and out.

[kidneyboytrip]

wow gud stuff  i think we all hav days when we hate d more than usual its ok 2 b mad angry even furious w the entire dialysis system  but for me its most important 2 remember that d is not my life only a small part of it even though it doesnt always feel that way do what it takes 2 make d easier 4 u so that u can savor the time that u have away from d all the more gud luck...later

[MooseMom]

totosidney, I got my fistula back in March.  I don't know if it is mature yet, but it buzzes like crazy.  I haven't needed it yet, but I am hoping that it will be mature when the time comes.  I am not enamoured of the idea of a Permacath!

natnnnat,  well, that was unequivocal!

kidneyboytrip, I'm not actually on D yet, but my mother is, and I see what dialysis does to her.  Of course, she is 30 years older than me, so it is not a fair comparison.  I know as much about dialysis as anyone can who is not yet on D but soon will be, and I know things will be rough at first.  I get scared when I think about what is to come, but then I have to remind myself that there will come a day when I am eager to start D so that my body can begin getting rid of all the nasty stuff.  I'm just at a very awkward part of the journey.  I know there are several people on IHD who are in my exact same position.

paris, I got an email from my half-brother the other day, just asking how things were going.  We've never lived together, so we are not close, but occasionally we keep tabs on each other.  I explained about the fistula operation and that I was going through the pre-transplant testing.  I didn't whine (it's true!), and I did my best to sound hopeful.  When he replied, he didn't make a single mention of what I had written; it was as if he had completely ignored the fact that I was ill enough to have to prepare for dialysis.  Now, to be fair, perhaps he assumed that I had an ulterior motive, that I was fishing for him to donate a kidney to me, but he is 13 years older than me and I don't think he would be a viable donor.  I could be wrong, but if a member of my family told me that he/she was about to start dialysis and was also trying to get on the transplant list, I would have at least acknowledged the situtation.  I don't expect anyone to fawn all over me, and the thought of being the center of attention under any circumstances just makes me want to run screaming into the night.  But because I have been under such stress lately (like all of us on IHD), perhaps I was a bit sensitive, and it just hit me the wrong way and made me feel like no one gives a XXXX about me.  But my half-brother is a rather odd unit.  I don't usual;ly suffer from hurt feelings, but the other day, I did.

[Quickfeet]

I hate that weird awkward limbo. I hate when people ask me how I am doing but, if they don't ask, I wonder if they care? I prefere that people don't mention how noticeable my disabilities are but, if they ignore my disabilities, I wonder if they think I am perfectly healthy. I want people to understand what I am going through but, I don't want them to pity me. I want people to realize how much pain I am in on a daily basis but, I don't want to be treated like I am fragile either. I don't want the attention but, I don't want to be ignored either.

I suspect your half brother simply didn't know what to say. I find that my guy friends have more difficulty talking about my condition than the women in my life.