What's Wrong with Me? :(

[Lexxtech18]

Sorry if this is the wrong section for a rant...

So ever since I got the news about this chronic congestive heart failure, I've been feeling really off. Not just physically, but mentally also. It's nothing really new, I've had emotional problems since I was a teenager; I know CKD messes with certain hormones especially in women. But lately I just have this sinking feeling, like I'm doomed. Like there is something totally wrong and they will never figure out what it is. I've been in ER twice this week and it helped with nothing. My PCP is a total quack; I've been with her for years and I still doubt she knows even what the kidneys do or how to spell kidney. I'm looking to get another PCP soon, but around my town good docs are hard to coe by, especially ones that accept my insurance. I'm having it out with my work again for missing days, I don't have FMLA at the moment as my quack PCP has yet to turn it in, and work has a very strict absence policy. You'd think a hospital would be more compassionate. Ha! I feel like my friends have abandoned me and my family is tired of my illness, or they just don't know what to do for me anymore.

Idk do you think I'm overreacting? My mother has started to label me as a hypochondriac. I don't know what to do anymore. Dialysis has made my brain fuzzy and I can't think straight half the time. It's so frustrating. 

 

[Jean]

I think you are going thru a rough patch. I know I have them some times and only the fear of God keeps me from killing myself. But, then it gets better. We have so many things that go wrong, sometimes you really think there is no end to all of this. It will get better and you will have some smooth sailing. Hang in there baby!!!

[Lexxtech18]

I think you're right. What's that saying? "When it rains, it pours!" That seems to apply here. Everything is happening all at once and it feels like there is nothing I can do about it. And for a control freak that is a very bad thing. 

[RichardMEL]

Seems to me that it is quite a natural reaction to have to news that on top of CKD and all the shyte that goes with that that this heart condition is scary... and you're only what, 25? I think most people would feel like you are.. plus you've also had some kind of cold or flu or whatever that is going around as well so already feel low with that on TOP of the usual D toxin crap and emotionally dealing with the latest setback news and what maybe going to happen. It's scary!!! I can't imagine how you must feel, but it sounds like what you're describing is quite reasonable to me.

You mention emotional problems for quite awhile since being a teen.. well I seem to recall you wrote that well you've been dealing with CKD since those times, started D what when you were 17.. when girls are supposed to be picking out prom dressses and worrying about school stuff, and friends and whatever... and you have this stuff... and then there's all the crapola you've gone through with relationships... what person wouldn't feel fragile with all that on their plate?

and yeah it is insane your work is being like this to you when yes they should understand more than most. *sigh* I wonder if the oft-talked about ADA could be of help to you at all? I have no clue since I'm not in the US but just a thought.

I guess none of us know what the future holds - good or bad... we can just have wishes.

sorry this post doesn't really provide any help just an opinion.

[CebuShan]

   
No great words to offer, just a hug!
   

[kit78]

Nothing is wrong with you!  You are going through what any normal person would feel with what you are dealing with.  This crap is a major roller coaster for everyone in their own way.

When I feel down I try to watch a movie I can lose myself in.  It may be only 2 hrs or so, but it's a break at any rate.

If my Mother, God rest her soul, told me that I'd prolly slap her upside the head!  Well, I prolly wouldn't slap her, out of respect, but I sure would go off on such an ignorant comment. She died at 52 of PKD doing in home dialysis back in the 80's.  Don't you just love being kicked to the curb by friends and family.  Pisses me off!

Hope you feel better soon.

[amanda100wilson]

Nothing is wrong with you.  I think that you are reacting normally to receiving news about a serious health condition.  I have had congestive heart failure and,yejection fraction went down to a level where they were considering an implantable defibrilator, and hen when I was in hospital the other month, They thought that I had had a heart attack.  Fortunately for me the CHF was acute, probably from an infection and it turned out I hadn't had a heart attack.  However, I still went brought the feelings hat you ar describing.   

[BobN]

Lexx, there is definitely nothing wrong with you.

Dealing with dialysis alone is hard enough, but layering another serious illness on top would affect the strongest among us.

Sometimes when we get bad news like this, the best thing to do is just keep your chin up through the initial shock period and as time goes by your mood will brighten.

Don't ever feel like you're alone.  Your brothers and sisters at IHD are here for you.

Oh, and ditch the loser PCP.  Ask around for a referral to someone else.  That dimwit is definitely not helping you.

[Riki]

I think your mom needs a swift kick in the pants.. She should know that you have real health issues, and are not a hypochondriac.  If I could, I'd let you borrow my mom for a bit.  She's the perfect CKD mom. *G*  She kinda was the house mom when I was a kid in the children's hospital.  She was one of the few moms who stayed, and a lot of the kids latched on to her, and to my dad, since they took turns staying with me.. *G*

We all go through this crap.  When I was your age, I was losing my second kidney, and I felt like jumping off a bridge.  As kidney patients, we go through all the regular trials of life, with our health issues piled on top.  It's not the easiest thing to get through, and we all struggle, and all I can really say it to keep plowing through.  There really is a light at the end of that tunnel, it's just really hard to see with all the darkness

[amanda100wilson]

Your mother does a need a kick in the ass.  Maybe you need to show her our comments.  What is it with these people when they don't take our illness seriously!

[Lexxtech18]

Thank you for all the comments!! It means so much more when it's from people who know first hand what you're going through. 

What my mom said was very unusual for her. She has been my number one supporter my whole life. I think she is jet frustrated because I have been sick lately (besides the CHF) and when I go to the doctor or ER they can't find anything out of the ordinary. It's frustrating and mentally draining for all of us.

[MooseMom]

Thank you for all the comments!! It means so much more when it's from people who know first hand what you're going through. 

What my mom said was very unusual for her. She has been my number one supporter my whole life. I think she is jet frustrated because I have been sick lately (besides the CHF) and when I go to the doctor or ER they can't find anything out of the ordinary. It's frustrating and mentally draining for all of us.

I don't know your mother, but if she is in any way "normal", I can imagine that she feels so helpless.  If my son, who is only a few years younger than you, was as ill as you have been, I would so royally pissed off at the world for the unfairness of it all.  It's very compassionate of you to recognize the fact that your illness impact those who love you and who hate to see you suffer.  I bet she'd really appreciate you saying that you understand that all of this must be so hard on her, too.

I understand that feeling of doom.  It can be just so soul-destroying.  I'm surprised that any of us have remained sane.  I think you are remarkably resilient.

[Annig83]

I agree with MooseMom.    I feel ya girl!  I just recently posted that I've been through 20 surgeries in my lifetime and I'm only 29.  Just when it seems to get better, things get worse.  One day I'm great and getting that fistula in a week, and I come down with the stomach flu... small inconvenience when you look at the bigger picture, but still! 

I think anyone who gets news about kidney failure, CHF, or anything else life-altering would have a hard time dealing with it.  I've had Generalized Anxiety Disorder since I was 15, but I think I had it even as a child... I totally understand the sense of impending doom.  There are days that I can't even stand to get out of bed, especially if it's a D day and hear my labs are off, or that I have a cold... plus any medical condition can bring on depression, so realistically... you're "Normal".    

I think you may be right about your Mom, as she is probably dealing with the brunt of the stress, but I think she may have used the wrong words in covering how she really feels.  If it bothers you, maybe sit her down and talk to her? My Mom does the same things sometimes, but she is the most loving and supportive person when it comes to my illness(es).  Most of the time she's confused about what's really going on and she'll say something out of confusion.  Usually if we sit down and discuss everything, she realizes that she needed clarification and by talking about both our emotions she feels better, and so do I.

Don't give up on yourself, or anyone around you!  We've all been handed a crappy hand, in this poker game called life (Cheesy I know, but true).  I'm hoping the Dealer eventually shuffles the deck and I get a new hand     

[Lexxtech18]

Thank you for all the comments!! It means so much more when it's from people who know first hand what you're going through. 

What my mom said was very unusual for her. She has been my number one supporter my whole life. I think she is jet frustrated because I have been sick lately (besides the CHF) and when I go to the doctor or ER they can't find anything out of the ordinary. It's frustrating and mentally draining for all of us.

I don't know your mother, but if she is in any way "normal", I can imagine that she feels so helpless.  If my son, who is only a few years younger than you, was as ill as you have been, I would so royally pissed off at the world for the unfairness of it all.  It's very compassionate of you to recognize the fact that your illness impact those who love you and who hate to see you suffer.  I bet she'd really appreciate you saying that you understand that all of this must be so hard on her, too.

I understand that feeling of doom.  It can be just so soul-destroying.  I'm surprised that any of us have remained sane.  I think you are remarkably resilient.

Thank you so much, MM! Those words mean a lot to me, coming from you, as I have been reading many of your posts and have a great amount of respect for you. I talked with my mom and she said she didn't mean what she said. She knows there is something going on with me but it's frustrating to sit back and watch each time the doc does nothing about it. So I gave it one more shot today, was having bad abdominal pain and headaches, etc. went to the walk-in and of course they sent us to ER. I got an absolutely wonderful nurse and resident. You could tell they both care for their patients and don't see them as a paycheck. I was having a very bad stress headache and nothing was cutting it. The resident actually took like 10 minutes out of his time to massage my neck and head to relieve it instead of throwing drugs at me. He manually took my BP himself instead of making the RN do it. He talked to me and my mom like actual human beings. I couldn't believe it. Best ER visit ever. You could tell he was concerned. He was so thorough, right away he suspected a bad UTI and that's just what I have. After a week of abdominal pain and no answers, he took the time to listen and help me. That is so rare to find in the medical field. I wish he had his own practice. I'd be a patient of his in a heartbeat.

[MooseMom]

Oh Lexx, doesn't it just transform your world when just ONE medical person takes the time to really listen to you with compassion and interest?  I can't believe that you had your neck and head massaged!  That's a first!  You must be special or something!  LOL!

I am so sorry that you've been suffering from a UTI for a whole week!  No wonder you sounded so miserable.  I guess you are on a course of antibiotics?  I'm hoping you feel much better soon.  I guess it just goes to show that we were ALL wrong.  There was something wrong with you, after all.

[natnnnat]

UTIs are horrible and having one for a week would be dreadful.  I really feel for you Lexxtech.  Ow. :-(

[del]

   Glad somebody finally listened!!

[MomoMcSleepy]

You have a lot on your plate, and without support it's tough.   I'm really sorry about this additional diagnosis.  maybe just go to your nephrologist or cardiologist to most things?  I have a good pcp, but she font treat my infections anymore, saying it's outside her scope. 

as for your mom, i still have to hear jokes about how "nervous" i am cause i got stomaches all the time as a kid, even after my gallbladder was removed and pancreas is scarred.  My husband laughed and said i was acting like a baby when i had a distonic reaction to a,new medication.  we are often surrounded by useless, callous, half-idiots, even in our families.  I'm oven underestimated, i think because i look young and am soft-spoken.  i also have ADD and seem spazzy.  i try to combat this by speaking in a deeper voice and squaring my shoulders, etc.  You look young and are a cutie-pie, maybe that's affecting outside perception?  Also, not surprised your work is giving you deal.  hospitals are sadly low on compassion.  i had similar trouble, too, but then called HR to see what my options were.  i laid it all out or them, and they were SO helpful!  I was so scared to tell anyone the extent of my issues.  my bosses were such jerks about my sick time, but i got on an official program through HR, and my rep told me SHE would talk to my bosses, and she did, and things improved.

unfortunately, we are all running a marathon, not a sprint, and sometimes it takes a while to catch our second wind.  your youth is a plus for you.  hugs, sweetie!  Stand your ground and get what you need, and maybe see a therapist?  Might get you over the hump.  some have a sliding income scale, like Catholic Social Services.

[Lexxtech18]

Got some bad news today. I talked to the PD nurse and she's doesnt think PR would be a good choice for me because last time I was on my membrane moved things too fast and I re absorbed the fluid. She thinks it will be the same this time round and I'd have to fill/drain every 2 hours. I asked about Extraneal and she said they don't use it and can't get it. So essentially I'm f***ed.

When will it ever end?

[CebuShan]

   
So sorry to hear! Would home hemo be an option for you?

[Lexxtech18]

I'm not sure if it would or not, I don't know anything about home hemo. Do you have to have a fistula or can you have a graft? Because I have a graft that has had a lot of work done to it. And with home hemo I'm not sure how my blood pressure would hold up, even then. I'd be scared to pass out on the home machine! lol idk... I'm going to talk to the neph and PD nurse some more and see what we can do. I don't understand why they CAN'T get Extraneal? It seems like it helps a lot of people. How can they deny that? 

Edit: Oh I see now. It looks like Extraneal is a Baxter product, and the company I was going to go through for the PD is Fresenius products only. *sigh* Is there a Fresenius product that is like Extraneal?

[Lexxtech18]

Yesterday was a very bad day. I went to my old apartment to drop off some money to my ex roommate and lo and behold he walked in right as I was leaving. This is the roommate I did not eant to see as he and Ihad sort of "a thing" going for a coupe years but never actually became a full fledged couple. I was in love with him and got friend zoned. its obvious I'm having a hard time adapting to my new life at home with my parents and have been very depressed lately. I've come to the conclusion that I will probably always be alone due to the fact that it's hard to find someone willing to take on a gf with a significant chronic illness. So I was not happy to hea that my ex roomie had moved on and found someone (on a skeezy dating site no less) and that he is happy, when he never bothered to give me a chance. I know I deserve better and I've moved on from loving this person to practically loathing him, can't stand the sight of him most days, in fact. But it still hurts that we were once so close and now we barely communicate.

I don't know. I feel my life has come to a halt and it's going nowhere fast. I have no real hobbie and find myself just sleeping as much as I can to pass the time hen I'm not working or doing dialysis. I used to be a decently happy person, loving life despite my illness, trying to look on the bright side. But lately I've just given up. I'm having way more bad days than good and it's literally killing me: sucking the life from me.

[natnnnat]

This is an excellent description of how you might feel after seeing the ex at exactly the wrong time.    Nicely worded.  I hope that the part where everything always has and always will be hopeless doesn't last long.  Its a perspective that can come from 'the vortex of exes', among the other things you have to deal with in life.  Don't worry.  The colour will return to the world, and at some point you will even notice how unimportant he really is in the scheme of things, a point which you half made already.  I reckon you might have hit the nail on the head with that comment about not having a hobbie.  I have heard it said that we need to notice the things that make time pass for us without our noticing (probably except watching tv).  Find those things, the things you love doing, and do them.  That way you find hobbies and develop meaningful activities.

[amanda100wilson]

i suggest finding another clinic that uses Baxter products, give them a call and go on a fact-finding mission.  check it out and ask specifically to meet the PD nurse.  tell her your situation and find out if Extraneal would be suitable for you.  bear in mind that Extraneal is for one long dwell.  It is not used for all dwells, so outside of this time, you would need to use regular bags and during this time, you would have the same issue.

[geoffcamp]

I totally understand how you feel. I got sick in my mid-twenties. Had a good job a girlfriend who lived with me and it all fell apart. As you know and are experiencing I tried to push thru it all still not seeing a doctor but soon I was getting sick everyday. Could not get out of bed even falling asleep at work. Rock bottom hit as the girlfriend decided I couldn't bring home the money and had no compassion about how I was feeling and not wanting to go out every night or even have dinner with friends (I would have just gotten sick anyway!). So she bailed and took our dog and within a week was in a new relationship. So abandoned by her and work I called my parents and moved back in with them. My dad is a true "type A" personality. (I really think the A stands for asshole sometimes). I drove myself to find work via temp jobs and full time stuff as dad says your young and nothing could be wrong with you your just lazy get up and flip burgers if you have to. I still had not seen any doctors except walk in places. I lost my health insurance I had with the good job and could not afford the COBRA. I was dying really dying. I finally was referred to a county Heath clinic from a walk in doc and they ran some tests and took urine as I was still producing at the time. That clinic sent me directly to a nephrologist across town when lab results came back. I didn't even know what a nephrologist was at the time and the clinic told me nothing except to see him. So I went in and he ran a few tests all the while my family is all over me because I could not do anything work wake up just really really sick. I would have to pull over on my way to these doctor appointments to get sick on the side of the road leaning out of my car. Two days after I saw the nephrologist and the tests came back he called and said it was an emergency and I needed to get to his office right away. He said he could not discuss over the phone but I would need to bring someone with me. So I asked my mother and she took the day off work but the entire time giving me the riot act. By this time my father would not even look at me and my sister (in law school at the time) made it clear how much she thought I was a failure and a bum for returning to parents house in my mid-twenties. (She inherited the type A personality from dad!). So we went in and sh*t got real in a snap of a finger. I was told I was in complete renal failure. (All I heard was failure at the time) and needed to go directly to the hospital and get a cath in and do dialysis that day!  I had NO IDEA what was happening. None. Mom actually dropped me off at the hospital. I went in for 2 LONG eye opening weeks. Everything went to sh*t total rock bottom. But I wasn't crazy I really was sick. I tried and tried to make my parents happy dialysis at home on a PD machine and exchanges during the day still trying to work and work because that's what normal people do dad would say. That's why they call it work lazy!  Still hear those words today. Still feel the pain emotionally. Mentally isolated totally drained trying to be "normal". Finally the doctors said enough. Called me in told me I can't work and I must devote myself to living with CKF. I still really had no idea what was really happening and how serious it was and still is. Fast forward to today (I know this is probably too long and boring but it feels great to release!). Today I am 43 years old I did get a transplant a little over a year after I started PD. but it rejected after almost 3 years due to a greedy nephrologist who took me back as a patient from transplant center where I was receiving free immunosuppressive drugs on a study. He had no way of tracking or adjusting levels and it all stared again!  I had another great job this time and since 2001 it's all gone to sh*t again. Same deal. I managed to get enough money to get a small condo and I try and do some consulting work but I'm on the social security medicare wagon and feel more and more everyday I'm just a burdon to the rest of the world. My sister graduated law school had great jobs got married and had kids lives like a queen still getting help from parents but hey she has the grand kids and I was left sterile from the immunosuppressive study drugs (they never told me about that side effect). I've dated a few women none last very long as I don't have anything to offer. I'm really not sure how or why I manage to drag myself out of bed everyday. And I've been on hemodialysis since 2002 again I have no clue how I manage to get in and do it. If you look at me you would never know all the issues in my life. I'm 6'2" about 80 kilos. (HA that's how you KNOW you have been on dialysis too long!  No idea what I am in pounds!!LOL). So my expectations in life have gone to crap. I always feel alone and isolated. I stay to myself and feel like a zombie just going thru the motions for no reason. I guess I saw your post and it really made me step back and feel my journey. Things really seem to have flown by me. Life is a progression of dialysis treatments and feeling like stir fried dog sh*t. I try. I really do but nothing seems to be working out for me. I feel useless with out direction and no stability without a relationship emotionally I'm scarred and skeptical. Wow what a cathartic word puke!!!  Any way. Your not crazy not lazy you deserve to feel needed and loved and so do I. I wish a had a huge success story for you I really do. But in my life I'm forever on pause. Waiting waiting for another transplant feeling and watching myself waste away every year month week and day from dialysis. Some day some how feeling there has to be more things can't get worse so it must get better. Still I'm putting one foot blindly in front of the other "phoning in my life" is kind of how it feels. Good luck to you I hope your mother finds a way to understand and cope. I wish you the best on the relationship front. I hope you find ways of making things better. This board is one of those things. I was here when it started but drifted away. Now I'm happy to be back to people that truly have an understanding of what's between the covers of our life book!!  I'm done. HA. Did ANYONE make it thru the entire post??  LOL. Godspeed and good luck to you. We as a community will be here for you. Regards  Geoff