I quit (Warning: Bit of a rant)

[smcd23]

   I am done. Just done. I am beyond E-X-H-U-S-T-E-D.

Hubby has been on HD 3x a week. He leaves before I get up. So MWF I am getting up, getting the toddler ready to go, locking up the dog in his kennel so he doesn't tear my house apart, getting out the door, getting the kid to daycare and getting to work before 9. Sounds easy enough right? Well I am sure it would be a bit easier if I got to bed before midnight. Because when I get home I'm cooking, cleaning, washing laundry etc etc etc.

So anyway, I've adjusted to the MWF thing (when he was on PD he took the little guy to daycare every day for me, so I just had to worry about me). And then hubby gets a lump at his PD catheter site as it was never taken out. We think it's a hernia. His neph can't do hernia surgery but he can take the cath out. That's scheduled for tomorrow. And just another thing, which isn't really relevant, but sort of is, hubby's dad just had his hip replacement replaced, and was supposed to come home today but couldn't because he is testing positive for bacteria (again) and his sister has advanced/chronic Lyme disease and was just told she can't drive any longer because the Lyme is causing narcolepsy. So any local family is hubbys, and is utterly useless right now.

My day today sucked. In fact this week sucked, and tomorrow doesn't look promising. This morning we had dentist appointments, hubby needed a dental check up for tx list, and I was overdue because I had to cancel my checkup because he was in the midst of the whole transplant debacle. And the dentist was running 45 min late. So my plan to be to work before 1 turned into be to work before 2. Then I am at work approx an hour and I get a call from daycare - the kid has a pretty high fever. I can't get a hold of hubby (he was sleeping) but I keep trying because I just cannot miss work. He goes and gets kiddo. Because hubby is having the catheter removed tomorrow, the plan was for me to take a 3 hour round trip to meet my parents so they could take little guy until Saturday so I could work a little tomorrow morning, take hubby to his surgery and work Saturday, which is the LAST Saturday we will be able to work probably until after the new year. I come home and look in kiddos mouth, he has white spots on his tonsils. Have to haul him off to urgent care - rapid strep test is negative but they give him antibiotics for tonsillitis because his tonsils look nas-tay. We don't get out of there until after 7pm, which is too late to start the trek to meet my folks, plus little guy isn't 100%.

So tomorrow I am home with kiddo while hubby does his HD, then I have to bring him up for surgery at 1130, can't stay as I have to turn around and haul kiddo off to meet my dad because there is not a single person in hubbys family (who is local) who can watch the kiddo Saturday morning so I can work. I signed up for 4 hours OT (we have an allocation which my boss had to divvy out and I have to show since I asked for the 4 hours and other people are not getting as many as they would like). Hopefully I will be back to the hospital in time to pick up hubby, and hopefully they let me leave and don't require me to wait, because I don't feel like waiting with a sick kiddo. And then since my folks have plans Saturday night, Saturday after work I have to turn around and go get kiddo. I only assume hubby will be out of commission for a few days, since he was when the cath was placed.

And the best part? He will probably have to go back under the knife in a few weeks to fix the apparent hernia since that's the soonest we can get an appointment with a general surgeon to even have them LOOK at it. I'm annoyed because hubby is limited in what he can do to help as is with his permacath in his chest for HD, and now we're going and cutting back the things he can do even more because of this stupid hernia, and stupid PD catheter (which could have been removed when they removed the tx).

    Uggggh!

Anyway, thanks for reading. Just very frustrated, and nobody seems to "get it." I got some money in the bank, my passport in my purse, and have totally thought about driving to the airport and taking a mental health holiday, but I feel so friggin obligated, I can't!!!

[gothiclovemonkey]

I cant imagine what it feels like for you.
I know i certainly feel like im a burden to those around me because of all this crap... i know its hard to deal with people who are sick, my mom was sick all my life... so i know that is hard, but to be the wife must be even harder
ranting helps a little doesnt it? keep on ranting to us!
 

[MommyChick]

I'm sure we have all felt your way at one time or another. I know I stress out very easy at times dealing with my D.
Hoping & praying things go smoothly for you & all work out in the end! 
Good Luck & God Bless!
 

[Fatkidney]

You're right, that is a crappy week!  I know this may sound a little looney toons, but sometimes when I'm in the car alone I say the things that I can't say in the middle of a situation for fear of hurting someone's feelings or saying something I'd regret later.  I'm sure if other drivers see me I look like a lunatic.  But just expressing it out loud, even with noone there is therapeutic.

I hope your little guy feels better quickly and all the things your big guy is going through go smoothly. 

[smcd23]

You're right, that is a crappy week!  I know this may sound a little looney toons, but sometimes when I'm in the car alone I say the things that I can't say in the middle of a situation for fear of hurting someone's feelings or saying something I'd regret later.  I'm sure if other drivers see me I look like a lunatic.  But just expressing it out loud, even with noone there is therapeutic.

Hah, that's funny. I tend to mutter things under my breath when things get frustrating. Generally, only the little guy is around, and he has no idea what I'm saying. Or the dog, I talk to the dog a lot when I am all alone, which is rare. I try to mentally check out while I'm doing the mundane chores by throwing on my headphones and dancing around while I wash dishes or fold clothes, but last night even that was hard. I wasn't able to get into it and get any relief, and usually I am in a better mood when I'm done. It's like we cannot just get ahead as a family It's always something, I swear.

It doesn't help the little guys 3rd birthday is next weekend. We're not doing anything major, but I was hoping to get a chance to run out to Toys R US and do a little shopping for his present this weekend and pick up some decorations for his party. Now it's looking like I'll have to order it on amazon or something and grab whatever plates/cups the grocery store has when I go get his cake the day of. I could go after work but I hate shorting him time with me since I am at work for most of the day. I am just thinking Tony won't be up for watching him solo, even for an hour.

I worry so much about him. I hate that Tony's health problems seem to overshadow our lives and "real" living. Just when we get to a good place and things start getting copacetic something gets thrown in there to throw us all off again. As is, I have to lie to him and tell him Daddy goes to work on D days because if I say where he really is, or even simplify it and say he's at the doctor, he gets all nervous and anxious. He understands work, I go there every day. That breaks my heart, I think Tony's stint in the hospital for 3 weeks really bothered him.

[fearless]

When two people love each other and one is suffering, they are both suffering.
Your husband's fortunate to have such a strong partner.

[willowtreewren]

 

So sorry. I would almost trade with you, just to have the energy and ability to drive again. The Lyme is kicking my butt. Is your SIL seeing a Lyme Literate MD?

Aleta

[Poppylicious]

Yikes.  Do both your parents work?  Would either of them (or another relative) be willing to come and stay for a few days to help you out (even if they have to sleep on the sofa)?  Life is pants when everything overwhelms us ... rant often!

It doesn't help the little guys 3rd birthday is next weekend. We're not doing anything major, but I was hoping to get a chance to run out to Toys R US and do a little shopping for his present this weekend and pick up some decorations for his party. Now it's looking like I'll have to order it on amazon or something and grab whatever plates/cups the grocery store has when I go get his cake the day of.

He's only three ... if he has mummy and daddy by his side, a torch (flashlight) in his hands and lots of cake to eat it will be memorable for him.  If you grabbed some plain paper plates and some food dye/icing colouring pens he could decorate them himself!

Sending you all lots of *huggles*.

[smcd23]

Aleta - I am going to send you a message regarding the Lyme... she claims she is seeing a Lyme literate doc, but I think the doctor is a quack. Long story, would like feedback from someone going through it also.

Poppy, you must have seen the flashlight pic I put on FB this morning. I ended up taking him out to Tractor Supply to buy him a blue flashlight (his request) and ended up buying him a shirt with big trucks on it, 2 books and flashlights for myself and daddy. Can't say no to that booger. And to think, he is sick with tonsillitis and still running a 101+ fever at times!

I did break down in the car after I dropped Tony off. Felt horrible. Little guy was strapped in the back seat and kept asking me what was wrong and kept telling me don't cry, I was all better. I am just so exhausted from running non stop. What set me off was the portable DVD player we have for the car wasn't working, and I was about to embark on a hour long car ride alone with him. He doesn't always do the best in the car and the DVD player can be a life saver. And not knowing what they were going to find during surgery (hernia, infection, alien babies from outer space etc) and not being able to stay, plus having to work in the morning, thinking of the time I missed today and in the future from work due to appointments and such, having to clean house etc etc just hit me like a ton of bricks out of the blue and I got so overwhelmed. It was pretty terrible. Then of course, while I'm a state away dropping the little guy off (thank god he slept the whole way) the hospital called and wanted me to take Tony home. They had told me he wouldn't be ready until 3 the earliest, and here it is 2:20 or so, and they want me to take him home? No wonder I have such a headache today!

Good news, no infection, no hernia that the neph could see. He assumes the lump is from something the tx surgeon did during everything. So I have to wait to hear from them now for a checkup.

[Leanne]

   I feel for you hon...I have been on both sides of this thing.  I took care of my mom and my brother.  My brother passed away in May from multiple sclerosis.  I had no one to help me with him except for my husband.  I would go to dialysis come home and bathe him.  He hadto be fed and everything at the end.  Felt like my days were two days long.  I would have to call and call to find someone to stay with him when I would go to dialysis. 

And my husband would be taking care of me after my surgeries and help me take care of my brother as well.  If its only a few minutes alone in the tub try to find a little time for yourself.  Caregivers often end up sick from so much stress.  Im proof of that.  I was so stressed for years and my blood pressure was hard to control.  So here I am.  I know its hard to find time for you but you must! I used to sometimes just stay up a bit after everyone was asleep and read or get up a few minutes early and take my coffee out on the porch.  You have to try to take care of you or you wont be able to be there for anyone else.

[Jean]

God Bless you honey. Please try to take others advice and get some few minutes of " you" time, before you explode where you dont want to. You cant get thru this all alone. Dont worry about the danged house keeping, the dust will wait for you. Best of Luck to you and your family.

[billybags]

smcd23, You poor thing, I feel shattered just reading your post. I hope things are calming down for you all. Its good news about not having an hernia. This disease is crap, the ups and downs we go through is horrendous, but you know what, we get through them. I am thinking about you all. It can not be easy having a sick husband and child to care for. You look after your self now. Tomorrow is a another day. I have only my husband to look after and I wake up in the morning and say "Let the stress begin" and it usually does.

[lmunchkin]

God Bless you honey. Please try to take others advice and get some few minutes of " you" time, before you explode where you dont want to. You cant get thru this all alone. Dont worry about the danged house keeping, the dust will wait for you. Best of Luck to you and your family.

I totally agree with this cause I started letting the house go, well, quess what? DUST up to my Elbows!  So what! I use to stress over everything and now, I just don't do it.  I do things on my time. Once I started doing NxStage at home on John, I found that it could and would be at My convenience. John use to be totally dependent on me for everything, but overtime, he learned all over how to do for himself.  I praised him (even if small) for the things he has learned.  No, it is not easy, but over time, it will get easier.
I think In-center can probably add to the stress too.  You are more or less at the mercy of their time schedule. Your'e also subject to their delays and goof ups too.  We couldnt wait to get back home and Dialysis. Its still no picnic, but you can at least relax and enjoy each other and count your blessings.
Bless your son's heart, he is so cute in your picture!  Give him the best Birthday ever, YOUR LOVE!  Take the time to do that, cause I know you miss doing fun things with them.  You just have to make it fun and not stress over it. Life is too short!

I know exactly how you feel. I had to make some drastic changes, and yet, they were good for us all.  I was the one who made it hard through my frustrations, anger ect....  I really was out of control.  But one morning, I got up and was dressing for my job, I listen to a preacher talk about worrying and stressing all the time. He said his daughter was a sickly child.  He worried at every end and she just got sicker and never seemed normal.  Until he read in the scriptures about how God wants us to hand everything to him and he will take care of it.  Our human instinct is naturally to do it ourselves, but he finally realized he couldnt do anything, so he gave it to God.
As time went on, things that happened, he gave it to God.  He noticed slight changes in his daughters health, to finally not be so sickly.
He realised then that when we stress, the Devil is taking his break and relaxing, cause we are doing the worring for him.  Satan is loving every minute of it.  But when he prayed and released it to the Lord, the Devil was frantic!

Whether we believe or not, it is a fact that worry & stress can make one sick. Just do the best you can to bring harmony back in to not only in your life, but of your families. Take care of the necessities first and leave the rest to wait.  Smcd, thats is all that anyone can do.  Don't be super-Mom Wife, just give them what they need, Harmony. The ole mom & wife back.

Women especially, have it harder, because of our emotions. If you put your emotions in check (this I have a hard time with) the rest will follow!

Sorry if Im rambling.  Its late, and church comes early.  I know this is a difficult place you are in. Just relax and breathe and try to make it all easier on yourself by just doing what you have to without all the frustration.  The ones you love & love you can sense it. Be strong, even when you don't feel like it, but please allow hubby to do more once he feels better.  I bet you will find that he hates that he cant help!

Keeping you and your family in my thoughts & prayers. You will find away, I know you will!

God Bless,
lmunchkin
P.S. Sorry this worked into a book! 

[brenda seal]

Standards are slipping at my house too - changed the bed and for the first time ever put unironed pillow cases on the bed !

[amanda100wilson]

could our husband do PD or home hemo?  Both would cut down on the amount of time spent in the car.  obviously the latter has a time commitment to it and involvement on your part but I believe that it would be doeable for you given the time that you already spend driving.

[smcd23]

could our husband do PD or home hemo?  Both would cut down on the amount of time spent in the car.  obviously the latter has a time commitment to it and involvement on your part but I believe that it would be doeable for you given the time that you already spend driving.

He was on PD and that sucked for a few reasons - he wasn't getting adequate clearances, and he was terrible about breaking down the boxes after he used them, so wed have piles of boxes in our bedroom and they'd fall over on us in the middle of the night. We still have our 3rd bedroom full of new boxes that we have to have them come pick up since he is no longer on PD. I don't think he'd like home hemo because of the responsibility and supply issue. But if he switched to the 2nd shift at dialysis, it would be so great, or at least it would be for me and our son since he'd be home in the morning. But I don't think he wants to, unfortunately. He likes going first thing in the morning I think, so he can do more in the afternoon.

Yesterday was sort of crappy. I was on the go from the time I woke up until I went to bed after midnight. Had to pick up little guy from my dad, and on Friday Tony was saying he'd be able to go with me, drive possibly etc, but then of course he was hurting too much. So I had to do it by myself. Thankfully my dad was able to fix the DVD player but still.

I'd love to let the house go, but I can't. I feel bad when little man is running around here and the floor is sticky from yogurt he dropped or whatever. I think I would feel less obligated if it was just Tony and I.

Today I went to the outlet mall by myself and bought myself a new winter jacket. I just liked having piece and quiet and driving by myself with the radio up.

[Jean]

Good job. That new coat will make you feel better inside too.   

[lmunchkin]

Your exactly right SM, about having little ones to look after. Your children should come first, period.  I would just sit Tony down and take his hands in yours and lovingly tell him how this is affecting you.  How much easier it would be if he went on 2nd shift at D. center.  Look him straight in the eyes and tell him just what you told us!  I think you will find him understanding!

But if not, then tell him (even if you dont mean it) that something has got to change.  You just arent getting enough time for your little one nor yourself!  If he wants to continue going in morning, then arrange for an Access ride to take him to & from the center.  Trust me, he won't like that one bit.

The point Im tring to make is that he can do somethings to help you out.  He still has his sight, legs and arms? There are others who have this crap and they do a hell of alot, and on their own.  You need some down time girl, before you bust!  Set some rules now, and I think you will see changes.  He can't help what happened to him, but neither can you.

Tell him you love him, but he has got to step up and help as much as possible.
I feel for you girl, but you really need to set boundaries!

Let us know how you are doing, and above all, take care of that precious boy.  He is adorable!

God Bless,
lmunchkin

P.S. I don't mean this to be rude. That is not my intent.  Im concerned not only for Tony, but you and that little boy.