Things I do for ME! (That help "Us")

[PurpleDivaNJ]

I am the caregiver of my husband who is newly diagnosed ESRD patient who just recently started HD. I am completely overwhelmed with this diagnosis, and I wondered how much our life as we know it has and will change.

I needed to find things to do for myself. While I need to help and support my husband, I also need to learn to relax, keep my stress level down, and do things that help me.

Here are some of the things I have begun to do:

1) Started a blog about our struggle with Kidney Disease - http://thedailydialysis.wordpress.com

2) Talk with friends, family, and co-workers

3) Join a support group (currently looking for one)

4) Read and learn more about Kidney Disease because KNOWLEDGE IS POWER!

5) Read, knit, cross stitch, and play Scrabble to relieve stress and relax

6) Learn more about Renal Diets and find new recipes

7) Write thoughts, fears, anxieties, feelings, accomplishments, etc in my own Personal Journal

What do you do??

[angieskidney]

Sounds like you are a strong and insightful person who is good at looking for resources. I found here (even though I am not American) and the Renal Support Network's www.kidneyspace.com helpful as my own country doesn't have as good of sites with as much information. I know it can be over whelming but it sounds like you have a good grasp on things. Just go day by day and don't think too far in the future. But at the same time becoming informed helps. Things like diet and advice from others.

Writing is a wonderful things and I checked out your site! I love it! Do you write poetry at all? For some reason I get the impression you are a creative person so I thought I would ask. Your site looks very informative.

I know my fiance (kind of my caregiver .. my only one) would try to take my mind off health and we would do "normal things" like sit and watch the sun set or play online games together or watch a movie. I also love to read. I also got a recipe book from Shire awhile back and another from the NKF

[PurpleDivaNJ]

Hi Angie!!

I am definitely insightful, but not always strong! I am trying to learn more about kidney disease, and I am definitely trying to accept this diagnosis.

I am currently on Weight Watchers so I understand the idea of portion control and "healthy" foods. It is not easy, but I sure do try to stay on top of things. I have found some good "kidney friendly" recipes, and I would definitely like to try them.

I love to write. It is a great release for me, and I am able to get out my fears and thoughts. The blog that I started will be a running story of our struggle with kidney disease. I will try to keep up with it on a regular basis!

I do write poetry. I also do crafts, design web sites, and even draw. I think creativity is another great release.

That is wonderful that your fiance takes your mind of your health and does normal things with you!! How long have you had KD? Are you on dialysis?

Bonni

[Cassie]

Bonni, I visited your blog, now I'm wondering if you have any of your poetry posted anywhere. I used to write but haven't written anything but a one verse limerick since my heart surgery in Nov. '07, followed 4 moths later by 10 weeks of dialysis. I'm not sure enough of the old brain is still there to put words down on paper!

[jody]

It sounds like you are such a strong person. I am a caregiver to my father and it is very scarry and overwhelming at times. I like to write in a journal or talk with family and friends when I am feeling down. My true passion is gardening and I really feel at peace when I do this. This time of year I sit outside and enjoy the simple beauty of everything around me.

[malibu]

What do I do for me.?. Hmmmmm let me see. For me. I constantly worry, hold exhausting fund raisers to try raising funds to get MM listed as active on the list, I am overwhelmed with fear, I try to smile and try not to tell people how stupid they are, I fight with this Dr and that Dr trying to get lab tests from this one for that one (7-10 days for WHAT?), I try to remain calm when MM gets up and leaves a Dr appt because the Dr took too long (OK, 1 hr and 10 min. IS a long time). I try to make yet another salad seem appetizing (when I really don't want to ever see one more salad as long as I live!) I could go on but this is supposed to be about what I do for myself. Oh I forgot -- I do the cooking AND the dish washing now because MM is too tired at the end of the day to share in any of the work. (This would usually after I do a load of laundry and ironing but before I walk the dogs) And we can't go out to eat because it has too much salt, potassium, phosphorus or protein; or MM thinks foods he's eaten out made him sick when in fact his kidney disease making him sick and he is in denial about it. Oh my favorite is the mood swings. MM is like a pregnant woman with RAGING hormones! He gets SO upset at things and he yells at me or is rude and mean to me because he is in a bad mood.

I read books and I got myself some aromatherapy bath salts. That is what I do for myself. I really need to get back into the mood of feeding MM things that are acceptable. I've stopped keeping the diary of foods we eat, I don't even pay attention at all to what I am feeding him. I just lost all desire to do what I should be doing. Part of this I think is due to me doing extensive meal planning, going to the store, making the food, cleaning it up etc. and MM complaning that there is no meat. That is a lot of work to do just to piss off your husband. An hour after dinner he would go into the kitchen and make himself a wheat bread and cheese sandwich! (phosphorus and protein) And when we had to go out (business meeting or ? birthday or whatever occassion forces one to go out) he would just order a steak or some other such thing that had tons of protein. So really, what was I accomplishing by going through all that hassle of the diet? And his test results have not improved at all for doing all that.

OK, I know I am complaining on what started out to be a really good post, and I am sorry but at least I am not a hijacker!

[Ottawagirl]

You can have some meat and cheese, just not tons.
I was told 3 ounce of cheese a week or 1 oz every second day is ok.

You can also buy dairy free cheese and even cheese made from rice.

Also white bread is no better for anyone anyways- it is full of phosphates as the preservatives, that is the sliced bread that is brand name...that soft mushy bread.
If you buy the store baked white bread it has no phosphates as most "commercial" breads use phosphate in their baking powder as an ingredient.

You can buy baguette or italian rolls that do not have that, but read the labels to be sure.

I usually buy half frozen bread and bake that at home (comes out bakery fresh in 10 minutes and has no preservatives and costs $3 canadian for 3 loafs....so around $2 us).
I know most grocery stores have similar breads....

Anyway hope that info helps alittle as most dieticians I spoke to got annoyed and told me that most people only like regular bread and not anything else....


actually if you do a lot of research and are quite inventive and do not rely just on the foods dieticians give you wich are blah...ypu can eat such yummy meals.
Unless you are used to "normal" food I guess......

[gauge]

My Wife is on PD. I joind the board of directors for our local Kidney foundation, I run and help with fund raising events for the foundation

I am in the process of starting a kidney dialosis camp with the Kideny foundation here in northwestern Ontario. One thing I really try to do is iprove quality of life for patiants and that is the #1 reason for staring this camp. The other reason is My wife and I know what it is like to have your entire world fliped upside down!

I try to stay as busy as I can other wise I think I would be very depressed.
Joining the foundation keeps me busy and I get to help folks along the way.
My wife and I also do alot of fishing and hunting, camping together as we are avid outdoors family.

gauge

[Rvrgypsy]

My husband finally understood yesterday that walking is good for ME! I told him I feel better and am able to help him more after I walk off some stress. Plus it's good for the dog. He had an AV graft done 8/4/09. We saw the pacemaker doctor yesterday and he has to have a new pacemaker as soon as he begins dialysis (in about a month and a half). I told his pacemaker doctor that worrying about whether the pacemaker was going to die was more stressful than anything at this point. Even though it has an alarm, you still only have a limited timeframe to get to the hospital. We are going next week to our Dialysis clinic to "observe" in order to prepare ourselves for what goes on.

My other relaxation is reading. His is watching old westerns, poker or extreme fighting.

Although his not able to walk any distance (congstive heart failure and neuropathy) I'm going to try to get him outside to ride the golf cart while I walk the dog. That way we can visit and will get him out of the house some.

Now that we know the dialysis is an immediate certainty, he seems more accepting and calmer. Our next hurdle is the diet. He is a meat lover so this will be a challenge.

[ShrinkingViolet]

My mom, who is on hemodialysis because of congestive heart failure and chronic kidney failure, is finally "getting" that I am setting some boundaries for myself! I live about an hour away from her by public transportation (I don't drive), and I do most of the cooking and shopping for her, and cart the food or other stuff on the bus to her apartment. So I decided that in order not to neglect my own life (where is that pesky Laundry and Cleaning Fairy, anyway?? ) I will have to do things my way.

My other lifesaver is cardio. I do 50 minutes at the gym most mornings and it keeps me healthy and relatively sane.

[taw]

[quote=malibu;22751]What do I do for me.?. Hmmmmm let me see. For me. I constantly worry, hold exhausting fund raisers to try raising funds to get MM listed as active on the list, I am overwhelmed with fear, I try to smile and try not to tell people how stupid they are, I fight with this Dr and that Dr trying to get lab tests from this one for that one (7-10 days for WHAT?), I try to remain calm when MM gets up and leaves a Dr appt because the Dr took too long (OK, 1 hr and 10 min. IS a long time). I try to make yet another salad seem appetizing (when I really don't want to ever see one more salad as long as I live!) I could go on but this is supposed to be about what I do for myself. Oh I forgot -- I do the cooking AND the dish washing now because MM is too tired at the end of the day to share in any of the work. (This would usually after I do a load of laundry and ironing but before I walk the dogs) And we can't go out to eat because it has too much salt, potassium, phosphorus or protein; or MM thinks foods he's eaten out made him sick when in fact his kidney disease making him sick and he is in denial about it. Oh my favorite is the mood swings. MM is like a pregnant woman with RAGING hormones! He gets SO upset at things and he yells at me or is rude and mean to me because he is in a bad mood.

I read books and I got myself some aromatherapy bath salts. That is what I do for myself. I really need to get back into the mood of feeding MM things that are acceptable. I've stopped keeping the diary of foods we eat, I don't even pay attention at all to what I am feeding him. I just lost all desire to do what I should be doing. Part of this I think is due to me doing extensive meal planning, going to the store, making the food, cleaning it up etc. and MM complaning that there is no meat. That is a lot of work to do just to piss off your husband. An hour after dinner he would go into the kitchen and make himself a wheat bread and cheese sandwich! (phosphorus and protein) And when we had to go out (business meeting or ? birthday or whatever occassion forces one to go out) he would just order a steak or some other such thing that had tons of protein. So really, what was I accomplishing by going through all that hassle of the diet? And his test results have not improved at all for doing all that.

OK, I know I am complaining on what started out to be a really good post, and I am sorry but at least I am not a hijacker! [/Q

[taw]

Malibu...just read your post...don't even know when you posted it....but you are touching on what I am feeling as my husband's caregiver....he's been on dialysis almost three months and of course very sick before starting for quite some time....I am new here...first post.......some days better than others for both of us......right now I am running on nerves.......that's it........i am sick ...and tired...and don't know how I can keep doing this...then I feel quilty b/c I'm not the one who's sick..so why am I complaining?
This is wearing me down and fast......I can relate to your post...I'm at work now and not getting much accomplished today and getting further behind......I just want this day to be over with...I just want to sleep ...when I sleep I don't worry and stress.......I can't seem to get enoug sleep lately......I have other factors in my life as well.......several issues...just too many to go on about it here.......glad I found this site...actually I got reaquainted with an old friend who is my sounding board and they had went to this site before me...I feel like a numb zombie today.........do you have days like that?

[Woriarox73]

For some reason whenever I try to go to a "Save"/"Load" selection, the game shuts down. Does anyone know why this is? Its so annoying because I cant save anything and I cant use the set ups


Also, to help with this problem, could someone possibly tell me the wing settings for the tracks? or maybe even just like "Austrailia-medium high"

I realise that the second thing will take a really long time so im not really expecting anyone to do this