Ramblings...

[alewis328]

I had no idea what to name this post.  I really don't have one certain thing that I want to talk about. After 4 days and 3 nights curled up in the recliner of D's room, he finally kicked me out and ordered me to go home and get some rest. Ya right. So here I sit at home...without him. I hate it.  I must admit though that posting on here is much easier with a computer and a keyboard!
Had to go back to work today. I already missed Friday and today was a payroll day.  Seeing as how I am the one and only payroll and benefits coordinator of the company and that about 400 people would be slightly upset when they didn't get paid on Friday, it would not of been a wise idea to stay at the hospital today.  I wanted to though.  Very badly.
I can't even describe how much my spirits rose when I walked into the room this evening and saw him. He was smiling!  And he had that shine back in his eyes. Seeing that is all it takes to revive my fierce determination to keep it together. Of course, I had my breakdown in the car on the way there. I never cry about any of this in front of him.  In fact, I try my hardest to not cry about anything in front of him. He already has so much on his mind. Every once of my positivity goes to him. Of course that doesn't leave much for me or the rest of the world, but that isn't really my concern these days.
I find myself incredibly angry sometimes. Anger has always been an easier emotion for me than sadness or fear or weakness or uncertainty. In fact, I think I tend to channel all of those feeling into anger.  Due to all the things I have dealt with and overcome in my life, anger is just easy for me. That sounds bad. But it is true. The good thing is as I have gotten older, I have learned to control that anger. (Not so much when I was younger) Being able to share my life with D truly has made me a better person. I think about consequences now. And my effect on other people.  I am so much more content as a person when I am not angry all the time. People that are in my life now always describe me as upbeat and always smiling. I try hard to stay that person. But deep down, I can feel all that anger about this situation bubbling. Along with all those other feelings I am trying to mask. Somedays when I am particularly low, I feel that I am wound so tight that I may just lose it one day. Finally have that breakdown that I feel like everyone is waiting for me to have.  Well, they can just keep waiting. I am to damn proud and determined and BUSY to have a breakdown! LOL!
Our "FREINDS" these days have really disappointed me too. I can count on one hand (hell - i wouldn't even need all my fingers) the number of friends that have proven that they really care lately. I can't stand the fact that D being sick or getting tired easily just really isn't all that CONVENIENT for them. Or the fact that I can't just go and do all the time whenever they need ME. I at least have a few left.  Pretty much all of D's friends are worthless in my eyes now. And I know he gets lonely and bored out of his mind. A little phone call from one of his old "friends" or maybe just a drop by would be fantastic. But that never happens. He has been so sick since all this started that work just isn't an option and he hardly ever feels good enough to go and do whatever.  So while I am gone at work at least 10 hours a day (I have 2 hours of commuting daily), he sits in this house.  I have heard the word "bored" so many times that I have come to hate it. Especially after coming home after a 10 or 12 hour day to a dirty house, dirty laundry, and dinner that needs to be cooked!  But I never say anything because when it comes down to it, I know he is going stir crazy.  I would too. I just don't know how to fix it. I have suggested multiple different hobbies or activities to him that don't require a whole lot of energy, but he isn't interested. Before he got sick, he was so active. We were always on the go. This is a huge adjustment for him and it bothers him so much. I'm not complaining (anymore, I would just like to take a nap) but I just want to fix it or provide a solution.  And I haven't been able to do that. 
I know I am just rambling on and on here. But when I log off this forum all that waits is a big ol empty bed and house and too many thoughts running through my brain. No wonder everyone tells me how tired I look all the time now.  Or repeatedly tell me to "Get some rest" while everytime following up with the "let me know if I can do anything".  Funny how they don't realize actions speak louder than words.
Ok, I believe I have been a negative Nancy enough for one night.  I promise to try to be more of my upbeat self next time.
Hope all is well with everyone 

[MooseMom]

There are many, and I mean MANY, members of IHD who could have posted exactly what you have posted.  Your feelings and circumstances are by no means unique.  But, they are unique in YOUR experience, and that makes them hard to cope with.  And that's why we are here.  We've heard this song before and know all the words.

Anger is a normal reaction to what is happening to you.  Anger can be useful, though, if you are smart enough to harness it.  Use it to educate yourself, to educate your boyfriend and to advocate on his behalf if he should need it.  Use your anger to ensure that his medical team doesn't give you the runaround or doesn't bother to explain what is going on and what is required to make him feel better.

You will have to learn how to differentiate between what you can do for him and what he will need to do for himself.  You can be supportive and loving, but ultimately he is going to have to haul himself out of any psychological dark hole.  Maybe therapy would help.  Maybe anti-depressant meds would help.  But certainly getting the best dialysis possible will go far in keeping him physically and emotionally at his best.

IHD is "Breakdown Central".  That's what we're here for!

Yep, you have found which people are your true, stong friends and which are not.  Only you know these people, and if someone asks if they can help in any way, tell them what they can do to assist you if you think their offer is genuine.  But try not to add the extra burden to yourself and to your bf by getting angry with people who don't know what you are going through.  No one really knows what you are going through and they won't know unless you trust them enough to tell them.

You know, people often don't know what to do when a friend falls very ill, and they are so frightened of making things worse.  So, fear often makes them inert.  Do either of you have a friend who you can call and say, "Listen, D has had a rough time lately, and it would be really great if you could drop by and visit with him."?  Sometimes you have to make specific suggestions so that others feel a bit safer, if you get my drift.  I know it shouldn't be that way, but people don't have crystal balls and may not realize how difficult things have been for you both.  If then they specifically refuse you, then you know that they are people who you don't ever have to think about again.

[Poppylicious]

I am the angriest person I know, so I completely understand the anger issue and it doesn't sound bad at all.

Don't be worried about crying in front of him, or of getting angry with him (he might only need a swift kick up the backside in order to get a little bit of housework done) for not doing anything whilst you're out all day.  You can't (and shouldn't) pamper him and he needs to know how much this affects you too. Don't bottle it up and hide it from him; it won't help either of you in the long-term. 

It sounds like you've had a very rough year, and an even rougher last two weeks!  Hopefully his body will (eventually) adjust to the haemoD and this will help with his outlook on the situation.  It's a shame PD didn't work out for him.  It didn't work for my Blokey either and I know that he was incredibly deflated by that. 

I hope he's home soon and feeling oodles better (or, as oodles better as is possible).

*huggles*

[looneytunes]

Aw AL...of course you are angry.  It's been 4 years and I am still angry.  I've just learned to channel it into educating myself and hubby about his disease and treatment options.  And those friends....I've ranted about the same thing....there are only 2 of his "good friends" out of several hundred that take the time to call or see him.  But those 2 are very special people and the rest...well, all I can say is it's their loss.

Right now, things sound a little overwhelming for you too.  Make a committment to do something for yourself every day, even if it's just take a walk, bubblebath, read a little or some "retail therapy".  You can't be strong for him unless you are strong in yourself. 

And this is the right place to "ramble".  We understand your life and though ours may have some minor differences, it's not a life for wimps.  Bless you for being there for D and you both will be in my prayers.   

[alewis328]

 
I just love this little dancing guy!  Ok so maybe I am nerd...whatever.
ANYWAY! He went home today YAYAYAYAY! For so many reasons.  I of course got almost no sleep without him there last night. I am so looking forward to going home and doing NOTHING except maybe watching a movie or something with D. Of course, seeing as how I haven't really been home in about a week, there are a million other things I should do. So we will see if the exhaustion or the guilt over how far behind things are wins out when I get home.
He was released pretty early this afternoon. He was actually able to find someone to take him home besides me (shocker).  Not that I would have minded, but I really don't need any more lost work time if it can be avoided.  Of course, you see how hard I am currently working
So now hopefully we can settle into routine life again. A new routine now that hemoD is back. ick. That means renal diet. And he is diabetic. Oh goody. I'm sure all you know just how keen he is on sticking to the diet plan too...
My problem is finding things to cook for dinner. I am a fairly decent cook but the problem is that most of the things that I whip up in the kitchen are nowhere near renal/diabetic friendly. He does have an insulin pump so the diabetic restrictions are not that bad.
I hated the "what do you want for dinner" daily conversation before..UGH!
I just won't think about that right now. I am just going to focus on the fact that he is home, hasn't thrown up in 2 days (miracle), and says he feels pretty good compared to how he was feeling. They did another GI scope today but I don't know yet if they found anything that was different from the first one he had done a couple of weeks ago.
Poppy - you crack me up, as I am also the "angriest person I know" haha. And we are disappointed that PD didn't work. It was more convenient in some ways. But now I can get that blasted machine out of our bedroom. And I know that when he is at Hemo, he isn't alone and if anything goes wrong he has the someone there to help him.
Loony - it's funny you mention bubblebaths and reading. Those two things combined are seriously my happy place. D doesn't read anything unless it has pictures of cars in it.  Or it is about hunting. So he does not understand this at all. At least when I am in the bath, he will not insist on talking nonstop.  I find it funny, I can be reading and he will say "hey did you see that *whatever* on TV?"  I always say NO I WAS READING.  He looks at me like there are pig tails sprouting out of my forehead. LOL.  BOYS!
MM - your words of wisdom always seem to calm me down somewhat. I have read many of your posts on here. And plan on reading many more.
Once again, so thankful for you all and this place where I can get some of these thoughts and questions out of my head.
 

[jbeany]

 

Has anyone bothered to give you "Cooking for David" yet?  It's got diabetic dialysis recipes.  My center had it to lend out, so you could try the ones you liked and copy them.
If not - http://www.culinarykidneycooks.com/  You may want to look into it.

I'm coming into this in the middle, so I don't know the whole background, but if he's diabetic and throwing up all the time, but they don't see anything on the scopes, have any of the idiot docs mentioned the possibility of gastroparesis?  I have it, and I had to self diagnose.  It's neuropathy of the nerves that tell the stomach that it's full and needs to start digesting food.
And there's a tiny little pill called Reglan that makes my stomach contract whenever I take it, so I don't throw up all the time.  Heavens, a simple solution, who knew?  Just a thought, if the docs aren't much help...

Glad he's finally home!

[Poppylicious]

I'm glad he's home, Ash(ley).  Hopefully he won't annoy you too much now he's under your feet again ... at least give him a few days to get settled in before you start to nag him!  (Not like me ... the last time Blokey came home from a hospital stint I was rolling my eyes within minutes; the first thing he did when he got home was make himself a sandwich and litter my clean, tidy kitchen with crumbs.  Grrr.)

 

[alewis328]

Jbeany - no, I have never heard of that. I will def look into that and the link you put up.  Am also planing on spending some quality time on the thread on here that is for food info.  This of course I am all planning on doing as soon as I can find some motivation. Ever since last night, I have none. I did manage to drag my but to work today but here I sit on IHD. I have already reached that point where I know I will not be doing much else work related today. What I would really like to do is crawl under my desk, put up a "Does not play well with others today" sign, and take a fat nap All of my get up and go has got up and went. 
Poppy - you sound like you know me all too well already! I walked in from work last night and there he is, on the floor trying to measure out 30 ft of paper for his daughter's school project thing and just climbing and moving around like he didn't just spend 5 days in the hospital.  Less than an hour later he isn't really feeling all that great anymore.  hmmmm. Wonder why?
And still my house sits.  Looking like it has been violated. I'm to the point where I just try not to look at anything! I am determined to tackle it this weekend. And it's looking like it's going to be on Saturday, considering D just text and said he would like to have a couple people over for a BBQ on Sunday. Oh joy. That means I buy the food, clean the house, finish the laundry so it isn't sitting around everywhere and cook the sides.  Oh ya sure! Sounds like a great time. 
Maybe there is a bright side.  Since we will be at home and by then everything will be done, a few cold ones may just worth it.

[paris]

I also relate to the friends jumping ship like drowning rats!   They want to go to the mall, or a movie or hang out.  I'm the one with kidney disease, and I don't spend my time shopping etc.  I've changed a lot and they want me to be the old me.  Not happening!  I have a few that stuck around. Instead of asking "let me know if I can do anything?"  they drop off a meal (and don't stay to visit). The other day, one brought me a bouquet of lavender she grew in her garden.  That is a friend.   My house smells lovely.     

Don't worry about the house. That is the last thing you need to work on right now.  Take that time for you. Sleep if you can.   If you get burned out, who will take care of you?   Look after yourself - you are very important in this whole picture.     

[Poppylicious]

Okay, this is a tad short-notice but regarding the barbecue ... instead of you buying food for it and rustling up some sides, can't you ask your guests to bring some bits?  If they know he's been in hospital I'm sure they'll understand that catering for them is the last thing on your mind!

Hope your weekend is relaxing!