Meltdown

[MooseMom]

There's a lot to be said for "simple pleasures".  I'm still able to sit down and enjoy a good book on a cold evening.  I can still appreciate rain.  All my years in England taught me how to make a good cuppa, and it's true that a good cuppa solves most problems!  While there are times I feel lonely, I have learned to jealously guard my "me time" and to appreciate it.

Still, this disease has cost us so very much.  I guess we could spend time and energy trying to recoup our losses, but perhaps what we need to do is to find new things, new "simple pleasures" that bring some joy to our lives.

[KICKSTART]

For me ..pure and simple , its my dogs ! Without them i wouldnt be here! One of my dogs has got a new trick. When im on the phone and about to say 'bye' she starts to sing and howl at the top of her voice ! Very embarrassing when its not my mum phoning ! 

[rsudock]

to bad all of us D, pre-D, and transplant folks can't live together somewhere...that way if you are sitting on the couch talking to someone then all of a sudden lay your head down to nap, everyone would understand. 

xo,
R

[MooseMom]

LOL@ rsudock.  I have a cousin who is only a few months older than me; she lives on the east coast and works for an airline.  She never married; several men have begged her to marry them, but she just never found the right guy (well, she did, but he suddenly passed away).  She's a very lonely person, and I think she may well have a problem with alcohol.  I keep inviting her to come and hang with me for a while, and she finally said that she just wouldn't be very good company.  I had to laugh at her and tell her that I am one major wet weekend every day and that she should come visit and we could just sit on the couch and bitch.  Doesn't that sound like a merry time?   Neither of us would have to be gracious or polite or civilized.  Misery loves company because we don't have to explain or excuse ourselves!

[brandywine]

Moosemom,
I sincerely hope you are feeling better. I had two days where I was sinking, and luckily, I snapped out of it pretty quick. The surgery wasn't that bad, and I'm not self-conscious yet, and my wonderful husband hasn't made me feel that way either. In a weird way, I'm actually looking forward to dialysis, hoping it will make me feel better.  In the meantime, let's take it day by day, and try not to worry about what is to come.
Easier said then done, but let's try.
-Brandy

[woodsman]

MM come on here you have been my rock since i got on here and you need to cast aside all the thoughts of dialysis and do the things you can now. I know it is hard to get started but i dragged my ass from the hous eand walked 4 miles in the woods with my sons hunting last weekend and it was hard but once i got to it it just get better, i was a bit short winded but we took out time and i enjoyed it and i even baggeds a deer that day....  If there is anything i can do to help you in anyway please PM me.....   Hang in there your tougher than you think...

Jim

[MooseMom]

Aw, thanks.  I'll take your advice, or at least I will TRY to!  I know you are right; I think too much.  I really need to lighten up!

[ChickenLittle56]

I am glad that you are feeling upbeat MM. Like Woodsman I kept my mind off of starting D by taking/attending my nieces and my sister to their tumbling meets(every time I go I come out with screeching sounds in my head) or attending my nephews ball games. I kept myself kind of busy back then. You need to find something to keep your mind busy.

[MooseMom]

You need to find something to keep your mind busy.

Fortunately, I have a wide range of interests, and I like to read, so I can keep my mind busy.  But sometimes I will reach a point where my mind just gets tired, and it either sinks into a chasm of doom or it speeds up uncontrollably, and then I have trouble falling asleep.

Also, I've noticed that if I am physically run down, my mood turns dark and panicky.  I know these are triggers, but sometimes I just can't seem to avoid them.

[Jean]

Had my own meltdown on Sunday MM, Cried all day. Since September, we have had 7 major items break down. 3 of them are fixed, but this all gets so expensive and I just sat and cried when my refrigerator just up and died on me. We are barely making it financially, and to have to have all of these repairs done, it hit me hard. Being without a refrigerator is heartless, as I can't cook and I cant go to the freezer and take something out of it to eat. So, I had to go and get a new one, Bingo, another $900.00 in thehole. If Real estate does not pick up soon, we will be living in the poor house. To top it all off, I have a neph appt. tomorrow and jury duty on the 6th. Whine, whine, whine. Oh, and lets not forget the horrible rash that dropped itself on me, and I itch constantly. Have I complained long enough? The good thing is that I know this will take care of itself soon, and I am feeling a lot better now. I hope you are too. We MUST fight out of this black hole and get on with our lives.
 

[MooseMom]

Jean, the hardest thing about dealing with this disease (or any chronic ailment, really) is that it doesn't occur in a vacuum.  Along with dealing with CKD, you also have to deal with refrigerators breaking down, financial worries, family concerns and all of the other stuff that even healthy people have to deal with.  I often think, "If this was ALL I had to deal with, maybe I could see the light at the end of the tunnel."  But no...we have to deal with everything else, too.

When I am really low, I get angry because I had hoped that having a handicapped child would somehow innoculate me from further tragedy.  But no...it is hard for me to wrap my head around the fact that both of us have incurable maladies.  The unfairness of it all infuriates me.

I would go ballistic if my major domestic appliances died on me.  My home is my refuge, and if anything goes wrong with my home and the stuff in it, it's like the final straw for me.  I've had my basement laundry room finished, and it looks AMAZING, but it took over a month to do; it was just one guy doing it on his own.  He did a marvellous job, but I hated having part of my house in such an uproar.

And you have a neph appt on top of all of this?  Oh, major meltdown territory!   That would be enough to take out my trusty Xanax!  Will you please post how your appt goes?  My neph is pretty much the only doc I see, so if I had a rash, he would probably be the one I talked to about it.  Could you show yours to your neph?  You don't think it is due to high phos levels, do you?  Sounds like an allergy, perhaps?  Could you have become sensitive to any meds?

I DO fight every damn day to get out of the black hole, but sometimes I'm just too tired to fight.  But today I'm not too tired, so today should be a good day!  I hope yours gets better, too.

[Deanne]

Are you feeling better these days, MooseMom? You're so supportive of everyone else, I hope you feel supported in return!

[paul.karen]

MM   

[ChickenLittle56]

MM, I am glad you are having a GOOD day, I know with all thats going our lives those are hard in coming. I try my very best to be upbeat everyday but it can hard, so very hard. So here's to manyy GOOD days.

[MooseMom]

Oh yeah, I DO feel supported!  And I also feel great gratitude for that!  I guess every once in a while I need a pep talk...

[Des]

 

[rsudock]

Moosemama,
 How are things going these days? Hope you are well!

xo,
R

[MooseMom]

Moosemama,
 How are things going these days? Hope you are well!

xo,
R

Oh, thanks for that!  I'm doing better these days, but I know it's only a matter of time before I have another meltdown.  It just seems to be the way I am wired.  I pootle along, ignoring the black cloud of doom, and then BAM!...something triggers a downpour.  It takes me a few days to recover, and then I'm back to pootling.  Then I'll learn some new horrible factoid about dialysis and then BAM!....downpour and meltdown.

[rsudock]

yeah moosemama it is like an up and down roller coaster ride huh? unfortunately it doesn't stop! yikes!

xo,
R

[paris]

For me, each step brought it's own set of worries.  Some where along the line, I decided not to give today away while I worried about tomorrow.  I refused to let the disease claim my days and my happiness.  Now, with a transplant, I could worry about FSGS returning, the fact that the kidney is not fully functioning, the anemia, low white count----but, thankfully, I have learned my constant worry does not change anything.     I hope you can find a good place to be and can enjoy this time before you reach the next step.   It is so hard not to be overwhelmed with dispair.   I use to laugh at the phrase "one day at a time", but now that is how I live.   ( I am not in the best spot this week, so I am trying hard to remember all my own advice!)    I am sorry this is so hard.  It is an ugly disease.   

[MooseMom]

You're right, Paris...each stage does/will have its own obstacles.  Perhaps that's the part that haunts me, that there will ALWAYS be worries whether I'm on dialysis or not or transplanted or not.  So, I'd better start working on minimizing my worries because if it's true that they will always exist, then I'll have to manage them just like I'll always have to manage my disease.  It will always exist, but it has to be managed.

It just never occurred to me that I'd one day have an incurable illness.  Never occurred to me.  I still am having a very hard time believing it.  I've always believed in God but now I really don't want to because if it is true that God creates all things, then I don't want to believe in a God who would create such a horrible disease.  I don't want to believe in a God that would create autism to ravage innocent children.  God scares me.

[paris]

I feel the same way -- I was the one that nothing happened to and the one people leaned on.  There are days, now, that I still don't believe what has happened.  I watched my sister in law die with breast cancer at the same time I was diagnosed. We spent a weekend together and were able to be very honest with each other.  She wasn't afraid to die, just afraid of the pain.  I thought she was so incredibly strong and accepting.  My family thinks that about me, but they can't see inside where the scared little girl lives.   I truly would have been a basket case if it weren't for IHD. That is how I view God -- he puts me in the right place to learn and gain knowledge.   I really don't think he causes bad things to happen to people.  I have lots of friends that say they had been praying for me and just knew my prayers would be answered. I give myself some credit in the whole situation.   I believe God gave me a brain to figure things out and take the best care of myself as I can.  If I hadn't researched and asked tons of questions, I wouldn't have known about chemo, IVIG, etc.   You have done an excellent job of educating yourself.  You're as prepared as you can be.  Enjoy today, then tomorrow.  The future will be here soon enough.    I hope you can put this awful disease on the back burner for the next three weeks and have a wonderful holiday.  When does your son arrive?  That is a nice Christmas miracle!  I can only imagine how excited you are.    We all care, MM, and wish you all the best.   

[MooseMom]

My son arrives in about two weeks, thanks for asking.  Speaking of my son, I made the decision long ago to be up front about my kidney disease.  I think because of his autism, I have worked especially hard to prepare him for life's disappointments as well as its joys.  Perhaps most parents would have chosen to be extra protective, but I went the opposite way.  My son is going to have a few more obstacles and challenges, and I want to teach him that life can be difficult but not to be afraid.  My family has a beach house on the Mississippi Gulf Coast that survived Katrina.  My son and I were there one week before the storm.  Months later, we had the opportunity to return, and I was in two minds about whether or not to let him see the devastation.  I decided that he should see it so that he could learn that people can recover from traumatic events.  He seemed to understand the lesson.

So, I've told him about my kidney disease.  My mom was on dialysis for five years, and that was something that just couldn't be kept a secret from him.  So it seemed natural to tell him about my situation so that I wouldn't have to lie about leaving him behind while I kept a doctor's appointment or so I wouldn't have to hide in another room while taking my mountain of pills each day.  I've told him about transplantation, and I told him about the doctor who had offered a kidney, being careful to tell him that an offer is just that and not more...it doesn't mean that it will happen but it was nice to know that someone was so compassionate.  I wanted to teach him about compassion in a way that might directly affect him.

And then he asked me if he was old enough to give me a kidney.

My heart just broke.  At the same time, I was proud that he even had thought about it.  I told him that since he lived so far away, it probably wouldn't be possible and that maybe someone else might offer.  I told him that maybe in the future, he'd come across someone who needed a kidney and that maybe he could remember his mom and decide to donate.  I didn't have the heart to tell him that it was possible that he'd be ineligible to donate because his autism may make a transplant center unsure whether or not he really understood the implications of donation.  He is high functioning...he is not mentally handicapped, but you can't expect a transplant center's social worker to understand much about autism and how it affects one particular person.  If he were to marry and have his own kids (improbable but not impossible), and if one of them needed a kidney, I suppose my son could donate...perhaps they'd let him.  Hmmm...I don't know.

Anyway, it is really hard for me to reassure him all the time.  He reads me very well, and I don't lie well at all.  I try to step around his questions, but once he starts on a particular topic, it's hard to get him off of it.  Sometimes his questions catch me on a very bad day, and he can hear it in my voice.  I don't always succeed in being the happy chappy.

[rsudock]

Paris, Moosemom I so appreciate your honest remarks about God. It is refreshing to see that my same feelings are out their. Moosemom my brother and I always talk about why God makes diseases like this especiallly to people/kids who have no choice....it does make it hard to have faith. Why some have their faith tested all the time and others not so much I will never understand. It seems easier to believe in God when everything is going well, but I guess it builds character. Even though I believe in Him it ESRD does make me have a "beef  with Him sometime....

xo,
R

[MooseMom]

I wish I could remember the details, but I saw a piece on TV about some scientists who did a survey to find out how people saw God.  There seems to be four groups...one, people who believe that God is omniscient and omnipotent and that He guides everything in our daily lives and that He knows how the future pans out because He has a Plan; two, that God exists but that He gave us free will to make our own choices and to suffer the consequences; three, that God created the universe and then pretty much skipped town; and four, that God is a myth.

I have heard people of great faith say that option one is true and still others say that option two is really what God is all about.  I have no idea.  Well, that's not true...I have MY idea.

When people are faced with huge challenges and claim to have faith, in what exactly do they have faith?  That God will deliver them from suffering?  That God will give them the strength to face the suffering?  If God can give strength, why can't He take away the suffering?

What about the people for whom the suffering is too much?  The people who commit suicide or have to take medications to relieve their unbearable stress.  Does this mean that it is NOT true that God gives us only what we can cope with?  Well, that's obviously the case, so what's wrong with these people?  Did they just not have enough faith?  Or did God simply abdicate?

If God created the world, is it his responsibility to keep it safe, to keep us safe, especially if He is the kind of God who is omnipotent?

I have had some religious training to the extent that I know the ten commandments and try to follow the Golden Rule, but those are rules of behaviour, not of faith.  I suspect that I believe in the existence of God, but I am not sure I have much faith in Him.  I also suspect He knows I'm mad at Him...