Some days I don't know how to handle it

[MandaMe1986]

Okay so this is just a rant. So I have Lupos, Immune complex glomerulonephritis; Bx 2006 – IgG;IgA;Igm & complements, Hx of < 10gm protenuria,  dyslipidemia, gout, fibromyalgia, hypertension, tachycardia , and a few other things.

Now that sounds like a lot, and at times it is all overwhelming.  But at the moment my issue is the fibromyalgia.  I hurt all the time.  But for some reason the last two days I just want to sit and cry.  And I can't take anything.  Tylenol doesn't even kinda make a dent in the pain.  As we all know  Aspirin is forbidden.   Now they offer me pain pills, and I can't bring myself to take them.  For a couple reasons. One of them is I have two 3 year old children at home with me all day.  I can't be all drugged up.  Another reason is I have a really high tolerance.  They have told me it is because of long term use and because of long term prednisone use.  And the last reason is I have a problem with  abusing them. A few years back I freaked out cause I went through 50 of them in 3 days.  After I realized what I was doing I stopped taking them.  And until I know that I will not abuse them again I won't risk it.    So that leaves me with just trying to deal with the pain.  It hurts to move, it hurts to lay down, it just hurts.  I hate the fact that I can't do things.  I have been sick for a long time, I was 14 when they figured out something was wrong.    And up until then I was healthy and active.  And its like I just woke up one day and couldn't do anything.    And days like today it all hits me.  I like to believe that I am not that sick, and I don't need anything from anyone. But it doesn't take long for reality to kick in.  I hate asking for help, I like to be able to do things myself.  Even if I can't walk I will not ask someone to get me a glass of water, I will hobble my ass in the kitchen and do it myself. I believe that is what I need to do. Especially for my children. They need to see that no matter what you are faced with you need to fight it with everything in you.  But I need help.  And I have no clue how to ask for it, nor do I know who to ask.  At the moment the kids and I live with my boyfriend (there father) and my little brother. Matthew my boyfriend works alot, and really odd hours.  He works as hard as he dose for me.  So that I don't have to work, so that all I have to worry about is the kids.  I couldn't ask him for more then he gives me.  I used to turn to my dad, but hes really sick now and he already has one grandchild living with him. I can't even think about asking him.  My mother wouldn't help if I asked.  My little brother trys but hes 20 and has his own life.  I have gotten so used to lying to everyone about how I feel I don't know how to tell the truth.  Its so hard sometimes.   I don't know what to do. 

I am not to sure what the point of this post is.  Just needed to get a little bit out. Thanks for listening.

[paris]

Mandame,  My sister has fibromyalgia and no one can understand the pain she has.  Her husband thinks she just doesn't want to do things.  She is on a lot of pain meds and every year the dosage increases.  She now takes oxycotin and morphine daily.  It is real pain, but others can't see what is hurting.  Some days are better than others and she tries to get things done then.  She never knows when a really bad day is coming.   I can't imagine how hard it is to cope with little ones and the daily household routine when all you want to do is go back to bed.  I am sorry that you have to deal with such overwhelming health issues so young.   Come here and rant and cry all you want.  That is why we are here.  We can't fix things, but we can give you love and support.   

[monrein]

Manda, it is completely understandable that you get overwhelmed by all that you're dealing with because it is a huge burden and would overwhelm anyone.  I think the first thing that you really need to do is to face the fact that your belief system (as admirable as it is in some ways) is not serving you very well.  By belief system I mean your wanting to believe that you are not sick and that you don't need anything from anyone.  This is a false belief and you will burn yourself and your body out.  Your body is telling you loudly and clearly that it needs your mind to give it some permission to do less.  We all, well most of us anyway, want to do things for ourselves but the reality is that your children can learn equally valuable lessons from you by seeing you ask for what you need from others while still doing things that aren't going to leave you crying and in tremendous pain on a regular basis.  You must face up to the state of things and stop "lying" as you called it to others about how you feel.  The stress of that charade will inevitably cause both your lupus and fibromyalgia to flare up and make things worse.  Telling the truth about how you feel does not mean whining or complaining all the time, it means valuing yourself enough to ask for a reasonable amount of help from those who can give it.  Perhaps you could have an honest meeting with your boyfriend and brother, explain the reality of things to them, you could even show them your post here and see if together you can brainstorm about some things that they could each to do ease your load a bit.  They may also have some ideas about other people in your immediate circle or community who could do a little.  A little from several people is not necessarily a burden to them but people can't read minds.  Make a list of some of the things that you'd like help with and see with Matthew and your brother what can be done.

This is not easy to do, and I'm not suggesting for a minute that it is.  But it is necessary if you want to protect your physical and mental well-being.  There are many difficult things required of us as CKD patients, becoming knowledgeable about all aspects of our illness, managing our diets carefully, consistently and vigilantly, complying with medication regimens that would drive anyone cuckoo and trying to maintain a sense of ourselves as worthy people when we often feel like crap.

I would strongly urge you to make an appointment with your doctor to talk about how you're feeling, tell him/her about your worries concerning the pain pills because you are right to be concerned about abusing them.  It can happen so very easily and it's understandable but not healthy either.  Perhaps he could refer you to a social worker to help you talk things over and develop some strategies to break things down and cope a little better.  If you're not yet on D you may feel worse before you feel better and you really have to get rid of the notion that you can just do all this alone.  

You are sick.  All of us with ESRD are very sick.  Dialysis keeps us alive and with enough good quality dialysis and good overall health management we can even thrive.  What we cannot do is be super human and to persist in thinking that we can pretend we're normal is to doom ourselves to failure.  I don't want that for you and it isn't required of you either.
 

[st789]

Thanks for sharing.  We all shared somewhat of what you are going through.

Take care and visit us for emotional supports.

[Romona]

  I just wish I could give you a hug.

[MandaMe1986]

Manda, it is completely understandable that you get overwhelmed by all that you're dealing with because it is a huge burden and would overwhelm anyone.  I think the first thing that you really need to do is to face the fact that your belief system (as admirable as it is in some ways) is not serving you very well.  By belief system I mean your wanting to believe that you are not sick and that you don't need anything from anyone.  This is a false belief and you will burn yourself and your body out.  Your body is telling you loudly and clearly that it needs your mind to give it some permission to do less.  We all, well most of us anyway, want to do things for ourselves but the reality is that your children can learn equally valuable lessons from you by seeing you ask for what you need from others while still doing things that aren't going to leave you crying and in tremendous pain on a regular basis.  You must face up to the state of things and stop "lying" as you called it to others about how you feel.  The stress of that charade will inevitably cause both your lupus and fibromyalgia to flare up and make things worse.  Telling the truth about how you feel does not mean whining or complaining all the time, it means valuing yourself enough to ask for a reasonable amount of help from those who can give it.  Perhaps you could have an honest meeting with your boyfriend and brother, explain the reality of things to them, you could even show them your post here and see if together you can brainstorm about some things that they could each to do ease your load a bit.  They may also have some ideas about other people in your immediate circle or community who could do a little.  A little from several people is not necessarily a burden to them but people can't read minds.  Make a list of some of the things that you'd like help with and see with Matthew and your brother what can be done.

This is not easy to do, and I'm not suggesting for a minute that it is.  But it is necessary if you want to protect your physical and mental well-being.  There are many difficult things required of us as CKD patients, becoming knowledgeable about all aspects of our illness, managing our diets carefully, consistently and vigilantly, complying with medication regimens that would drive anyone cuckoo and trying to maintain a sense of ourselves as worthy people when we often feel like crap.

I would strongly urge you to make an appointment with your doctor to talk about how you're feeling, tell him/her about your worries concerning the pain pills because you are right to be concerned about abusing them.  It can happen so very easily and it's understandable but not healthy either.  Perhaps he could refer you to a social worker to help you talk things over and develop some strategies to break things down and cope a little better.  If you're not yet on D you may feel worse before you feel better and you really have to get rid of the notion that you can just do all this alone.  

You are sick.  All of us with ESRD are very sick.  Dialysis keeps us alive and with enough good quality dialysis and good overall health management we can even thrive.  What we cannot do is be super human and to persist in thinking that we can pretend we're normal is to doom ourselves to failure.  I don't want that for you and it isn't required of you either.
 

Yeah I tell myself I need to be more open with them.  I do talk to a therapist a couple times a month. That has helped with a lot.  I understand what you are saying though.  Thanks.  As for seeing a doctor that has a part to do with me being so stressed. The hospital I was at had problems with keeping doctors and keeping appt.  So at the first of the month I changed health plans. But I can't get a new doc until the 2nd of Feb and then I have to wait for the appt.  Then I have to have him refer me to a Remo and Neph doc.  So for now its just a waiting game.  But yeah thanks.

[kellyt]

 

[kitkatz]

All I can say is I know a little bit of how that feels...    All I can give are hugs.

[G-Ma]

 

[Tinah1968]

Mandy,
 It is hard to be in that situation and feel helpless yet at the same time feel like you should ask for help but you can't ask for help because you think that would make you weak. If you are a stay at home mom and you have good  friends even though you are ashamed to ask they will appreciate you more if your here and able to ask for help rather than if something happened to you (God Forbid) and they didn't know that you need them. They will feel that they let you down. You need to do whatever it takes to keep going for yourself  and your children, I used to be the same way,but even though i hid it from everyone including my family I choose 2 people to condife in. So that they knew if something happened they would be able to tell my family. See my mother died when I was in my Twenty's and my father on my 30th birthday. Thoes were the 2 worst days of my life with my brothers and sisters having to go through that I decided not to tell them i was sick, (I didn't want them to worry or be sad for me) I THOUGHT KEEPING IT FROM THEM WOULD BE BETTER. it was because I choose to avoid it I pushed them away. That hurt them more then me not telling them the truth. Be honest  with the people you trust and Love they will appreciate you more and will be more willng to help you if they know the truth. no matter what happens you always have us here..
 

[twirl]

I wish I lived close to you
Bubba is at Texas A&M
Stasie lives in with her husband and two children in Spring
and Missy is moving to California to be with her soon to be husband
and my husband coaches every sport in school
I had to stop teaching
and I am so bored and it gets lonely now that Sad Sack and Zuko are gone
I am down to two pets
I would love to get to know you and your children
please get help some how
having two three years olds is work
wonderful work but still work

[Sunny]

I feel for you and understand what you're going through.
Is there a part-time preschool for your 3 yr olds so you can have some time free for yourself? I was a stay-at-home Mom when my children were young and when they were 3 yrs old I sent them to pre-school 3 times a weeks for 3 hours in the Morning each time. They loved it and it gave me time for myself. It was a Co-op so it didn't cost that much. Then when my oldest was 11 and my youngest was 9 I contracted kidney disease and once again became a stay-at-home Mom. The friends that I met in that preschool along with friends from their elementary school became my Godsend when I couldn't find the energy to do all that "kid" stuff. Parents stepped up to the plate to help me get my children to after-school activities. What you need is a way to become part of a social network for the benefit of your children and a preschool can sometimes do that for you. +++++I also have aching muscles and joints due to kidney disease and have resorted to vicadin at times. Last week my renal Doc told me there are a number of new meds out there for this. Ask your doctor about them. Hang in there, you can find ways to get through this.

[MandaMe1986]

I feel for you and understand what you're going through.
Is there a part-time preschool for your 3 yr olds so you can have some time free for yourself? I was a stay-at-home Mom when my children were young and when they were 3 yrs old I sent them to pre-school 3 times a weeks for 3 hours in the Morning each time. They loved it and it gave me time for myself. It was a Co-op so it didn't cost that much. Then when my oldest was 11 and my youngest was 9 I contracted kidney disease and once again became a stay-at-home Mom. The friends that I met in that preschool along with friends from their elementary school became my Godsend when I couldn't find the energy to do all that "kid" stuff. Parents stepped up to the plate to help me get my children to after-school activities. What you need is a way to become part of a social network for the benefit of your children and a preschool can sometimes do that for you. +++++I also have aching muscles and joints due to kidney disease and have resorted to vicadin at times. Last week my renal Doc told me there are a number of new meds out there for this. Ask your doctor about them. Hang in there, you can find ways to get through this.

Yeah I have them on a couple waiting list out here.  For some reason every pre school has a really long waiting list.  I am hopeful to get them in by next year.  I could get them into a daycare. But if I can help it I really don't want to do that.  There is a big diffrence between them.  But yeah the preschool idea is wonderful thanks.