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Lillupie
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« on: October 17, 2012, 08:06:03 PM »


Im really starting to hate people.....Mind you i started Pd 5 years ago this month. In 2007 I had a 2 year old daughter, and I was commuting 45 min to college to finish my degree. Well since I got my licesnse Ive had an obligation to drive my mom as well as myself whereever she needs to go, well until I got married in December and moved from Michigan, to be with my husband in June in Tennessee. Ok to get an idea of the driving, when my mom was working I had to driver her to and from work, and my daughter to school, which was over 100 miles a day! This was since Feburary 2011. On dialysis I feel like a zombie a lot of days. Now in Tennessee I met a neighbor who has 2 girls my daughter's age. well her husband is military too and has one car, and her husband is gone from 5am-6pm. Now she has
been wanting me to drive her everywhere too! (she knows im on dialysis) She asked me to drive her kids to cheerleading on day. Then yesterday it was to get her daughter medicine on post. I was ok with it, I told her im waiting for my supplies and it should be about noon when I got them, but she kept nagging at me. She called me at 8:30am, again at 10am, then at 11:30, and then at 12:30. The supplies came at 11am. I was so tired from not sleeping the night before, and the phone kept ringing and it was her! grr. Teh delivery guy kept calling because my place is not on the GPS (brand new subdivision)! We get to the military store and I need one and only one thing, well my neighbor gets a cart full! Im thinking we have to be back to get the girls from the bus. Now today I talk to my mom and she admits that when I didnt want to drive her places, it was disrespectful to her because she is the mother and she is helpless (no license and no car) and I should want to take care of her!!! OMG I struggle taking care of myself and my daughter why do I have to take care of my mom too??!! My poor husband is trying to decide if he wants to stay in the military and Im trying to encourage him just so I dont have to move back to Michigan because I dont want to drive my mom all over the town again. I hate driving because he wears me out. I feel like i falling asleep at the wheel alot. Like it takes me 24 hours to drive what it would normally take a normal person 8-10 hours! My mom can have me driving her to get ciggerattes(sp?), to the post office, to the grocery store, to the mall,a nd all that wears me out. I come home from taking Alex to school, and crash, because i have a hard time sleeping at night. And my mom would nag at me saying the mall is crowed the later you go. This neighbor reminded me of my mom! But for my mom to say it is disrespectful of me to not to want to drive her! UGH! I have explained to her how tired im all so many times! PS. my husband wants me to cut ties with the neighbor. The thing is it seems as though Im the one to always drive everywhere. I love being with my husband because he actually picks up the task of driving a lot of the time.

Thanks for reading,
Lisa
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dx with lupus nephritis 5/99'
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smcd23
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« Reply #1 on: October 17, 2012, 08:57:02 PM »

Lisa, have you thought about getting a "note" from the doctor that says you need to limit driving? You know, maybe tell those who seem to think you are their personal chauffeur that your doctor said that spending so much time behind the wheel is dangerous for you because of your condition? Maybe say they changed your meds for something, and you shouldn't really be driving due to potential sudden drop in bp, possible dizziness, falling asleep behind the wheel etc? Maybe if you don't want to make it a permanent thing, say the doctor said you need a month or two to adjust to the meds, and that you are limited to 1 or 2 very short trips a day and only if you feel up to it? That way you don't come off completely rude for saying no, but at the same time get some control back over your life.

I know when hubby was on PD, certain people in his family assumed he got up every morning feeling awesome and was available to do their bidding all day while they were at work (not me, I am talking about his father here mostly) and it made Tony so mad that he stopped answering his dads calls during the day. He always wanted him to run here and pick this up, run there and do this for someone etc. Tony didn't always feel up to it but his dad just assumed he was doing PD, was feeling great and since he can't work, he could be available at a moments notice for him. I don't think you are alone here, and I do sympathize. I hated coming home to Tony being annoyed because he had to drive all over creation for his dad that day.

Hang in there, and seriously consider the doctor idea. I know I used that excuse on Tony's dad a few times when he called me screaming because Tony wouldn't answer the phone. Works well on those who don't fully understand the illness :)
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Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
The Lady
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« Reply #2 on: October 17, 2012, 11:05:58 PM »

Sweetie....you need to embrace the word "NO".

There is nothing disrespectful about refusing to be someone's slave, even if it's a parent. Your mom is just utilizing guilt trips to make sure she can manipulate you and it's both wrong and completely unfair. You need to tell people the truth and not feel badly about it...."I'm sorry...I can't help you out today because I am feeling sick and exhausted and it's really not safe for me to drive." If they get mad at that, how much of a friend can they be? And if they are not a friend, why should you be making yourself sicker over them?

Focus the energy you have on what's important....you, your daughter and your husband and those people in your life who want you in it for more than being their beck and call girl.

And never, ever feel guilty for it.
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amanda100wilson
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« Reply #3 on: October 17, 2012, 11:12:56 PM »

like SMCD23's idea.  saves hurting feelings and is harder for those 'users' to circumvent  than with a 'no'.   :shy;
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JasonEb
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« Reply #4 on: October 18, 2012, 02:04:32 AM »

like SMCD23's idea.  saves hurting feelings and is harder for those 'users' to circumvent  than with a 'no'.   :shy;

I have to disagree.  Problems can arise if her neighbor/mom somehow catches her in the "lie".

I agree that the best course is a simple but firm "No".  Explain again that, though it may not appear so sometime, your disease often causes you to be too exhausted to even drive around.  Offer to help when you can but for them not to depend on you or be upset if you say no.  If they still get upset, tell them that "that's just the way things are", and leave it at that.

Unfortunately, you may have to ruffle their feathers, but it's better than them taking advantage of you.
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Grumpy-1
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« Reply #5 on: October 18, 2012, 04:11:57 AM »

smcd23 wrote "I know when hubby was on PD, certain people in his family assumed he got up every morning feeling awesome ..."   When I started D and PD, that is how I thought.  That I would be back to "Normal" again and doing the stuff I use to do.  Well, I learned that on D (hemo or pd) that you will not be "back to normal" again.  You now have a new normal.  My wife has just started to realize this too.  Now she isn't so quick to nag or jump on me to get something done that I know I can't do. 

So - please TRY to educate your family and neighbors that you can't jump drive them around at their beck and call.  That you are sometimes too tired or feeling sick to drive at all.  As has been said, just say "no - can't help right now, feeling too tired or sick to feel safe driving."  If they can't accept that then too bad for them.   Grumpy
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Lillupie
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« Reply #6 on: October 18, 2012, 06:45:42 AM »

oh yeah I have told my mom a thousand times the way I feel. She doesnt care. I ve cried and cried behind the wheel, and she doesnt care. The problem is I CAN do things I just feel as though I dont have the energy to also take care of other people and she doesnt get it. The problem is im not 100% bedridden and I have a license. I drive myself to the doctors, and go quite often, I drive myself to bible study and to church, be apart of the PTA at my daughters school. So my mom says I have the energy to do the things I want to do so I should be able to take her places. I see energy like money. I have enough to pay my bills. I dont have enough to pay someone else's. Just like I have the energy to get the things that I need to get done, I cant also help someone else.

And when Ive said no to her, she would tell me to get out of her house, knowing I had nowhere else to go.

Now Im afraid that if my husband wants to get out of the Army and we go back to Michigan she is going to be calling me all the time. Other people I know are going to again put blame on me because I should want to take care of my mom.

grr
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
Grumpy-1
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« Reply #7 on: October 18, 2012, 06:54:17 AM »

Lillupie  - I feel sorry for you with the situation with your mom.   I do like your analogy of energy is like money.   I wish I could suggest someway of helping your mom and keeping yourself sane and healthy.  Yes - you need to help your mom, but being at her beck and call won't work.  Helping your neighbor is also something you can do - but limit it to when you feel good enough.  Don't be afraid to tell your neighbor "no - I can't drive you around right now, I don't feel save driving.  I'll call you when I feel I can drive you safely."  Grumpy
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jbeany
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« Reply #8 on: October 18, 2012, 07:33:23 AM »

I'd start saying NO to the neighbor ASAP.  You've got no ties to this person to make you feel you need to help her.


I do understand that it's hard to stop doing for family what you've always done.  I was the "family referee" for years.  Dad wasn't speaking with Sis, BIL wasn't talking to Gram, Step-mom wasn't speaking to anyone, blah, blah, blah.  So I spent all my visits with everyone trying to restore communications or smooth things over.  It was exhausting, and then got worse when I got sick.  I finally vowed to hang up my whistle and toss the striped shirt. The next time someone suggested I get someone else to agree to something/tell someone something/whatever - I started handing over phone numbers and telling them to do it themselves.  They got huffy for a bit, but they got over it.  And my fears that the entire family would fall apart never happened either.  Without me to run between them, they either got over their arguments or fought them out in person.  Either way, it stopped being my problem!

As for your mom - well, sorry, Mom, but plenty of parents don't deserve the respect they demand.  She's got you running in circles while she's running a guilt trip.  Have you considered counseling to figure out how to deal with her and the guilt?  Maybe through your church?  Being able to talk face to face can be easier than trying to explain it on line.  (Not that we don't want to help on here!)  Have a strategy in place before you even have to think about moving back - it might help your stress level now.
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noahvale
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« Reply #9 on: October 18, 2012, 07:54:24 AM »

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jeannea
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« Reply #10 on: October 18, 2012, 09:41:10 AM »

According to Miss Manners, No is a complete sentence. Another good sentence is I'm afraid that won't be possible. Practice them and use them on the neighbor. She is not owed any explanation.

I do agree with some others that counseling might help with how to deal with your mother.
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SooMK
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« Reply #11 on: October 18, 2012, 03:18:44 PM »

Some of you must remember one of Ann Landers' favorite lines: "No one can take advantage of you without your permission." It is definitely not easy to say no, especially to family members, but you need to take care of yourself. Practicing on the neighbor is good and maybe it will help you deal with your mother which I hope you don't have to do.
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SooMK
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« Reply #12 on: October 18, 2012, 04:01:46 PM »

Ugh. I have had friends like this before. It's not even so much about them needing a ride as it is not understanding I have days where I just CAN'T hang out because I am completely drained and all I want to do is rest at home or sleep and recover. When it starts getting personal and they just do not listen to what I have to say and start badgering me about is when I shut them out. Sometimes forever. I don't like saying no to my friends, but I also don't like when people do not take the time to try and understand how I feel and understand that it's not personal.

Sometimes a cooling off period is all that's needed and I can come back to them when I am not so angry and we can work it out. Some people just need surgically removed.

If you're mother is forcing you to drive when you're sick and just watches while you cry, I hate to say it, but she is a terrible mother. My mother would NEVER do that to me. In fact, she would be the first person to force me to go to bed and rest and she would figure something else out. Call a friend... call a cab.... take a bus. Whatevs. What does she do when you don't live there? She's got to have some other way to get around. Arg. That just makes me upset!

You just tell that neighbor of yours NO! It's ok to say no. You aren't being selfish. It's not your job or duty to provide for her needs. You take care of you, hon. *hugs*
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Deanne
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« Reply #13 on: October 18, 2012, 07:32:38 PM »

Have you thought about why you agreed to drive your neighbor around? If you can understand what it is in yourself that makes you say "yes" to these requests you might have better luck training that part of yourself to say "no." If a plain old "no" doesn't feel right, what about "I'm sorry, I have plans that day and won't be available." It's none of her business that your "plans" might be to lay on the couch. At the very least, charge her for your time and mileage! $15/hour + 60 cents/mile or some such thing. 

Mothers can be a real challenge! Why would you need to move back if your husband left the military? Are there no jobs where you are now? If not, then is it an option to move someplace else that isn't near your mother?
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Deanne

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1994: Diagnosed with FSGS
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« Reply #14 on: October 19, 2012, 04:48:13 AM »

'No' is not an easy word to say but you may find that once you've said it a couple of times, it does get easier.  Sod your neighbour ... if she wants a lift somewhere then she plays by your rules, because you're already going there and you can honk outside her house when you're ready, not have her pester you on the phone.  And if she spends too much time in the shop you leave without her.  You don't owe her anything. I don't drive, and live in an area with rubbish public transport, but I would NEVER ask any of my neighbours for a lift anywhere, however well I got on with them and even if I knew they were going the same way; I'd wait to be offered, and even then I'd probably decline (I declined when a neighbour asked if I wanted him to drive me to the vets to save me hauling my cat on a ten minute walk down the high street in his basket; in hindsight it was foolish to decline, but I'm the sort of person who hates putting people out.)

As for your mother, words completely fail me! If hubby leaves the military do you HAVE to go back to Michigan? It's my understanding that the US is a very big country (*fairly cheeky grin*) and there might be the opportunity for him to look for work elsewhere.  If you must go back could you find somewhere far enough away from your mum so that you don't have to be at her beck and call all the time?  She must be getting on fairly well without you at the moment, regardless of what she may say.

My MiL is a bit like your mum, only not so vocal (we get the moody silent treatment and the 'oh, isn't Blokey's Brother so wonderful for doing everything that he does' pointed statements instead) so I have a vague understanding of how you must feel.

Many *huggles* ...
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Lillupie
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« Reply #15 on: October 19, 2012, 09:45:50 AM »

Poppylicious, and Deanne
 I legally wont be able to move anywhere but Michigan. My daughter's father would fight it. I had to go to court for permission to go to Tennessee. I share joint custody of my daughter with her father. Legally I cant more more then 100 miles away from him.

We love where we are at, but the change in domincile would even have to be extended if he stayed in the military at the same location.

Lisa
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
Poppylicious
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« Reply #16 on: October 19, 2012, 11:33:16 AM »

Poppylicious, and Deanne
 I legally wont be able to move anywhere but Michigan. My daughter's father would fight it. I had to go to court for permission to go to Tennessee. I share joint custody of my daughter with her father. Legally I cant more more then 100 miles away from him.

We love where we are at, but the change in domincile would even have to be extended if he stayed in the military at the same location.

Lisa
Ah, that does make it a tad more complicated then. 

*huggles*
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« Reply #17 on: October 19, 2012, 11:48:50 AM »

If you *have* to go to Michigan, couldn't you circumvent your mothers demands by moving 100 miles away from your child's father in the opposite direction of your mom? Then she couldn't expect you to drive her, and it would be a lot easier to say no 100+ miles away.
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Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
Whamo
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« Reply #18 on: October 19, 2012, 01:07:13 PM »

You are too nice.  Just tell her you're too tired, and don't take her calls except on Sundays. 
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« Reply #19 on: October 19, 2012, 01:28:05 PM »

Sorry to hear your blight.  I have always been a straight shooter if someone needs something from me but can't understand how sick I am I don't care if it's family or friend they can just kiss my  :sir ken;  best of luck to you.
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December 2003 diagnosed with IgA Nephropathy 80% Function.
October 2004 started In-Center Hemo Dialysis Perma-Cath 5% Function.
September 2005 Living Related Donor (Mother) Transplant.
March 2009 Diagnosed CKD and IgA Nephropathy.
August 2009 Upper Left Arm Fistula.
November 2009 started In-Center Hemo Dialysis.
December 2010 started Home Hemo Dialysis.
January 2012 went back to In-Center Hemo Dialysis.
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« Reply #20 on: October 19, 2012, 08:12:12 PM »

Michigan is a big state.  Bet you can find someplace besides your mom's hometown...  ;D  All our snow is always a good excuse to avoid road trips!
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« Reply #21 on: October 19, 2012, 08:37:38 PM »

If you *have* to go to Michigan, couldn't you circumvent your mothers demands by moving 100 miles away from your child's father in the opposite direction of your mom? Then she couldn't expect you to drive her, and it would be a lot easier to say no 100+ miles away.

Yup that is what we are planning on doing.

Lisa
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
Lillupie
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« Reply #22 on: October 19, 2012, 08:43:04 PM »

Ugh. I have had friends like this before. It's not even so much about them needing a ride as it is not understanding I have days where I just CAN'T hang out because I am completely drained and all I want to do is rest at home or sleep and recover. When it starts getting personal and they just do not listen to what I have to say and start badgering me about is when I shut them out. Sometimes forever. I don't like saying no to my friends, but I also don't like when people do not take the time to try and understand how I feel and understand that it's not personal.

Sometimes a cooling off period is all that's needed and I can come back to them when I am not so angry and we can work it out. Some people just need surgically removed.

If you're mother is forcing you to drive when you're sick and just watches while you cry, I hate to say it, but she is a terrible mother. My mother would NEVER do that to me. In fact, she would be the first person to force me to go to bed and rest and she would figure something else out. Call a friend... call a cab.... take a bus. Whatevs. What does she do when you don't live there? She's got to have some other way to get around. Arg. That just makes me upset!

You just tell that neighbor of yours NO! It's ok to say no. You aren't being selfish. It's not your job or duty to provide for her needs. You take care of you, hon. *hugs*

She calls her cousin a lot of times. Then it comes back on me. He wants to know what im doing and if Im home I should be the one to take her not him.  If her cousin finds out I dont feel well and I said no, to him it looks like an excuse not to take my mom places.
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
Lillupie
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« Reply #23 on: October 19, 2012, 08:43:51 PM »

Michigan is a big state.  Bet you can find someplace besides your mom's hometown...  ;D  All our snow is always a good excuse to avoid road trips!

 :2thumbsup; :rofl; :clap; good one
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
JasonEb
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« Reply #24 on: October 20, 2012, 12:30:37 AM »

She calls her cousin a lot of times. Then it comes back on me. He wants to know what im doing and if Im home I should be the one to take her not him.  If her cousin finds out I dont feel well and I said no, to him it looks like an excuse not to take my mom places.

Let them think it's an excuse.  Be selfish.  Your cousin, neighbor, and mom don't want to understand so don't even bother at this point.  None of them have any hold on you (now that you are out of your mom's house).  THEY are the ones who need you, not the other way around.  If they can't play by your rules, then you'll simply take your toys and go home.  If you want you could tell the neighbor something like you'll take her shopping one day a week, tentatively depending on how you feel, and she will pay you something for your gas and time.

Start a new thread here and I'm sure we'll all be happy to relay story after story about how dialysis makes us feel, and you can direct them to that thread or print it out and give it to them.

They are only taking advantage of you because you are letting them.  Take a stand for yourself.

Good luck.
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