Today

[MooseMom]

I have an appt to see my neph today just like I have done every few months for the past 6 years.  But today is the first day that I am seriously considering not going because I just cannot bear to see those worsening numbers in black and white and then have to keep my composure.  I feel such an oppressive since of doom that I have nightmares.  I read other posts on this forum and wonder when all of that will start happening to me, and I wonder why it is worth the struggle if all I have to look forward to is ill health and pain.  I feel utterly, totally hopeless, like someone being offered up for execution.  It's as if a train is headed straight for me and someone has tied me to the track.  I feel completely trapped.  Worse, I have no one really to talk to.  My husband works so very hard and gets home so very late at night, and it must be hard for him to come home to a wife who is nothing but distraught.  All of our years of marriage have been overshadowed by this disease; nothing has been "normal" for us, and it never will be.  He is of the opinion that all I have to do is get a transplant, and then everything will be solved...like that's going to happen anytime soon, if ever!  And the problems don't necessarily end there, anyway.  Sure, I could talk to a therapist, but a therapist can't give me my kidneys back, so I don't know what the point is there.  This is never going to end, and today I just cannot cope with that fact.  Having the neph tell me that things are getting worse, as he surely will say, will only exacerbate these feelings of disaster.  I can't even bear the thought of looking at him.  Today, I am at my very lowest, and I didn't think that was possible.  And I know it will only get worse; that's the really frightening part.      No need to reply; I just had to vent.  ESRD is such a lonely road.  It is so very lonely here.

[lola]

 

[monrein]

      

[okarol]

I cannot know the depth of you despair but I can identify with the feeling of impending doom. Jenna has been on dialysis before, and she did ok, not great, not awful, but she was fine most of the time. So having her starting dialysis in the near future should not be so frightening, but I still worry. When I talk to other patients I remember that it does look overwhelming if you try to absorb the whole thing at once, but it's really just one day at a time, and anything beyond that is just drama for me. Is she ok RIGHT NOW? YES! It is this moment that matters, not tonight, tomorrow, next week, next year. So if I can stay in the moment, not project my fears forward, not fret about what is to be, I can stay calm and cope. It's not easy, but it feels better when I can let go.

My friend Cathy gave me this quote:
"Worry never robs tomorrow of its sorrow, it only saps today of its joy."
   ~Leo Buscaglia

MooseMom, just keep posting and sharing - there are lots of people here to support you. 

[paul.karen]

Sorry your feeling so down, it is understandable 

[Slywalker]

Dear Moosemom -    In my humble opinion you should see a therapist.  I think they could help you get to a better place in regards to dialysis.  ESRD is a lonely road and loved ones don't personally know what we are going through.  I found my husband just wanted to fix things but he also felt helpless because he couldn't just fix it.    Hang in there and consider a therapist. 

Big hugs

 

[MooseMom]

Dear Moosemom -    In my humble opinion you should see a therapist.  I think they could help you get to a better place in regards to dialysis.  ESRD is a lonely road and loved ones don't personally know what we are going through.  I found my husband just wanted to fix things but he also felt helpless because he couldn't just fix it.    Hang in there and consider a therapist. 

My renal dietician recommended two therapists who see a number of chronically ill patients, but my insurance won't allow me to see them.  I have to see a therapist that is on their list of approved therapists.  So much for freedom of choice, eh?  Corporate America gets to make those decisions for me, it seems.  I have looked into local therapists on the approved list, but they all seem to specialize in drug addicts, crazy teens and divorced people.

[Stacy Without An E]

I was currently where you are back in 2004, putting off Dialysis as long as possible because I couldn't bear starting again.

Its awful and demoralizing.  Part fitful, part humiliating.

But after you get past the first few months, I hope you'll give yourself the opportunity to learn what I have in just the last few years.

I'm stronger than I ever knew and capable of more than I ever imagined.

Here's to a strong and prosperous future for you and your family.

[monrein]

Dear Moosemom -    In my humble opinion you should see a therapist.  I think they could help you get to a better place in regards to dialysis.  ESRD is a lonely road and loved ones don't personally know what we are going through.  I found my husband just wanted to fix things but he also felt helpless because he couldn't just fix it.    Hang in there and consider a therapist. 

My renal dietician recommended two therapists who see a number of chronically ill patients, but my insurance won't allow me to see them.  I have to see a therapist that is on their list of approved therapists.  So much for freedom of choice, eh?  Corporate America gets to make those decisions for me, it seems.  I have looked into local therapists on the approved list, but they all seem to specialize in drug addicts, crazy teens and divorced people.

Don't give up though on those therapists who might not "specialize" in chronic illness.  Meet and interview a couple of them and see if you feel a connection.  Good skills are transferable and it's the connection that's absolutely key.  When I worked as a family therapist with teens, that was my "specialty" but lo and behold one day, I had a client's mother who was on portable oxygen, waiting for a double lung transplant.  The entire family was in disarray and shock, one extremely depressed son, another acting out like crazy, marital issues, etc etc.   I worked with them as a family, found another therapist for one of the sons, did some marital sessions mostly focused on changed sexual realities and worked individually with the Mum around the eventuality of her death.  She was a documentary film maker and an extremely interesting person in a myriad of ways.  I worked with her right up until her transplant and we stopped meeting when both boys were past 18 which was when our mandate ended.
Her husband kept me updated and we regularly reviewed the work we did together.  It was one of my most rewarding cases and although ultimately I couldn't save her life, the family were very positive about our work together and felt that the three years we had together were helpful.  My supervisor asked me to work with chronic illness cases a couple times after that and I frequently consulted with other therapists on their cases when this issue presented itself.
You need someone who can "hear" you and your struggles, not necessarily an "expert" on anything specific.
Good luck MM, if you do pursue this idea and move on to the next therapist if the first doesn't match.   

[MooseMom]

In the past 5 years, this is what I've tried:
1.  Biofeedback.  Expensive at $125 a session.  The biofeedback lady eventually had to stop because her mother became ill and she had to leave to take care of her.
2.  Therapist.  He tried to get me to join his church.
3.  Therapist number 2.  She wanted me to see a psychiatrist because she herself didn't have a license to prescribe prescription drugs, and she wanted me to have that option available.  Fair enough.
4.  Psychiatrist.  Grumpy old cow who ended up in an argument with my husband over what to prescribe.  The appointment ended up being a power play between the two of them.  She merely told me to treat my illness like a job, ie, don't think about it after 5pm.
5.  Hypnotherapist.  Interesting, but again expensive.  I took a few good things away from those sessions, but he killed it when he chided me for something or another I told him I was feeling.  I thought you were supposed to be honest about what was causing you pain, but I learned the hard way that that is not always the case.  I stopped seeing him.  No one is going to try to make me feel guilty for my depression and sadness.  Oh, and he, too, tried to get me to join his church.

[monrein]

OMG...is just about all I can say MM.  Any so called therapist who tries to sell anything....whether it be church, magnets, supplements, whatever, doesn't deserve their license in my opinion.  I can't say I blame you for throwing in that particular towel.  Yikes.

[MooseMom]

pt 2.  The last person I spoke with to try to get some help was a naturalist (recommended by the hypnotherapist).  She was kind of an earth mother type; I really liked her.  She "examined" me; I remember her looking at my irises and telling me that she could see evidence of kidney disease.  She told me to stop using regular deodorant and gave me a recipe for a natural alternative (which I made, used and promptly broke out in a painful underarm rash).  She told me to drink wheatgrass juice, so I'd dutifully go to Jamba Juice and do just that.  Can you spell d-i-a-h-h-r-e-a?  She wanted me to drink lots of other things, but I told her that I needed to be wary of phos and potassium, and she said that she'd do some research.  She also took a lock of my hair and was going to send it to a special lab to find evidence of dangerous metals.  But I never heard from her again.

So, it's not like I am refusing help or am denying that I need it.  I have actively sought help in the past, and it is not easy for me to do.  I find it utterly exhausting to spill my guts time and time again, waiting for that special someone with whom I can find a connection.  It is not easy for me to come and post here and talk about myself; it is SO not me, but I do it because I WANT to feel better, so I force myself out of my comfort zone in an effort to help myself.  All of you bear the brunt of the assault, but at least it is in cyberspace; I get to lance this boil, and none of you are obligated to read and/or respond.  I am eternally grateful for anyone who takes the time to read.  I have received more valuable and practical advice from IHD than I have from other sources.  Perhaps that is the answer...just keep posting here.

[MooseMom]

No, I can't spell diahrrea.  Is this how you spell it?
I haven't exactly thrown in the towel, yet.  I just need to rest a spell before I jump back into that particular bucket of water.

[monrein]

It can be really hard going to find a good therapist or counsellor and I'm naturally suspicious of iris readings, hair analyses, power balance bracelets, magnets, chicken entrail readings etc.  I do go to a naturopath but I researched her very carefully and made sure that she is comfortable working with my complicated regimen of meds.  She consults with another naturopath who has a kidney transplant  himself.  I also never take anything without running it by my neph who thinks I'm a touch odd but he humours me and we work it out.  He's finally admitted that the fish oil I take might just be beneficial...I'm committed to his education even if he protests. 

Please do keep posting here MooseMom and always remember that anything any of us says or suggests can be ignored just as easily as adopted and we're all part of a big lab experiment.

[MooseMom]

Actually, the wheatgrass juice has been the only thing I have ever ingested that I didn't ask my neph about first.  As I recall, I did insist that the naturopath look up the potassium content, and it was OK, but that's no excuse to ever do that again.  As for fish oil, my neph was the one who suggested that I take it; I've been doing so since I first started seeing him 6 years ago.  I consult him on everything, and he says that he appreciates that; it makes his job easier.

Today ended up not being quite as bad as I feared.  My numbers have not worsened, which was all I cared about.  I am still losing a lot of protein, so the one little piece of good news I have is that my neph has taken me off Sandimmune.  He said that he thinks that particular drug has done all it can do for me and that now it may be doing more harm than good.  He is hoping that my GFR will get a little bump and that this will buy me some time.  My other numbers look surprisingly good, considering.

Also, he is very happy with my fistula and says that it is coming along nicely.  I completely forgot about asking him about fluoride; as always happens, after talking about medical stuff, we veered off into conversations about books or philosophy or how Coco Chanel was a Nazi sympathizer (per my neph).  We have some very odd and esoteric talks.

[Ang]

what  was  your  point  of  getting  out  of  bed  each  day  before  you  got  sick?


find  that  point  again, if  its  feasable,if  not  find  a  new  one  that  will  get  you  out  of  bed  each  day,

in  the  beginning  its  hard  and  scary,but  it  gets  easier  with  time,  im  approaching  4  years  on d

good  luck

[Sunny]

Moosemom,
I hear you loud and clear. I feel the same way. I'm glad you feel comfortable posting about it here. Reading your posts can be very helpful to others. Like you, I've tried 3 separate therapists on the list for approval by my Insurance Company, and they all stunk. None of them are trained in dealing with people who have chronic disease. The only thing that has really helped me is Yoga and Meditation. When I first contracted kidney disease (9 yrs ago)I took classes offered through Community Outreach programs and it has been my saving grace. I learned how to feel comfortable doing meditation on my own at home. When no body else is there to help me, I have found help from within myself. I admit, the last 5 months have been particularly stressful and I finally had to get a prescription for an anti-anxiety drug which I take when all else fails. Keep posting about your feelings, because just reading your posts has helped me. I am not as skilled at putting what I feel into words.

[MooseMom]

Actually, Sunny, yoga and meditation seem to help a lot of people.  I did try yoga some years back; I took a class that lasted about six weeks, but I came away each time with a stonking great headache.  Getting outside and going for a walk is helpful to me, but this past winter was diabolical, and I didn't get to walk as much as I would have liked.  Now meditation...the hypnotherapist I saw did give me a meditation/self-hypnosis CD, and I keep forgetting that I have it, so I'll have to go and find it and give it another try.  Thank you for the reminder.

I'm also glad that you mentioned anti-anxiety meds.  I did have some Xanax that my neph prescribed for those weeks before I'd get test results.  I may get a refill; I think that for me, at least, they serve as a good safety net.  I didn't use them often, but when I did, they seemed to help although it could be the old placebo effect...I don't care!  So, thanks for THAT reminder, too!

[Jean]

I think that, by all means if a med makes you feel a little better, then take it. My first visit to my internist,after my heart attack,  he asked if I was depressed, and I said no, but, I cry every day. Not like me, so he gave me a mild anti-depressant. Now I also take about a quarter of a gram of anxiety meds too. Every neph visit, like you, I dread it for fear of the numbers going down, and every little ailment I want to blame on my kidneys. Know that you are not alone, we are all here to help you in this trying time. I dont know where I would be if it was not for IHD and all the great people here. One day at a time, one step after the other. 

[RichardMEL]

MM so I'm confused - did you go to the appointment or miss it?

I hate to say this but even if you missed it won't change the numbers or what they mean.

You keep talking about a future of "pain" - dialysis is a pain in the butt, but honestly 99% of the time there is no pain associated with it. Emotional pain well I guess that's something else hey?

I think like Stacy says it's funny how much you can take when it comes down to it. I have also found I am a long stronger emotionally than I thought I would be.

I think it is best to keep your appointments and doing the lab tests - trying to deny it won't make it go away(sadly).. and hey who knows, you may be stable and not need to start just yet.. but even if it is time, and you will know by how you feel, it could wind up being a good thing for you to get some stability into your life(via dialysis) and help you do more with your time I think.

Hang in there!

 

[Quickfeet]

  legal drugs have become my best friends.

[MooseMom]

Richard, yes I did go to the appointment, but it was really hard.  There was a bit of a screw up with my labs.  When I check in for my regular neph appt, I always ask for a copy of my labs.  The copy they gave me looked all wrong.  It had the wrong date on it, it showed results for tests I don't usually get, so I was mightily confused.  By the time I got to the nurse, we were both puzzled, and then I realized that this was the set of labs required for pre-op procedures regarding my fistula surgery.  The nurse then had to go and rustle up my even more recent labs (taken only a week after the surgical labs), so I had to endure more anxiety while waiting for more results.  But the numbers were not too bad...creatinine a bit better at 3 and GFR at 17.  I'm slightly anemic but not enough that he feels treatment is warranted.  Potassium was normal.  The only thing still not real good is the amount of protein I'm losing (over 2 grams), so he has taken me off the Sandiummune which is wonderful because that stuff smells like a skunk that has rolled around in rotten bologna.  He examined my fistula and said it was coming along really well, so that was good news.

So, I feel like I have been reprieved for 6 weeks, and I am going to take this opportunity to put all of this stuff out of my mind.  My son is flying in from London today for his Easter break, and I have not seen him since last summer, so I'm really excited to have something wonderful to look forward to for a fortnight.  I know that D is still in my future, but it will not happen today nor tomorrow, so I'm going to hold on to that.  I'm determined that today will be a much better day.