Dealing with disease

**miepie** · Nov 26th 2009, 09:25 AM

Hello everyone,

As you all may know, or not, I am dealing with heavy bladderpains that no doc can cure...... that leaves me in pain most of my days where I can't do a thing and all I can do is lay down and watch movies/stuff on youtube (we don't have a TV) to keep me distracted..... no painkiller helps........
Hubby is starting to get very upset that he can't do anything to help me...... I tell him all the time that he's doing more than enough, that he takes care of me real good and of the house and our animals too...... if I want something I only have to ask and he does it for me....... he helps when the girls are here to take care of me (usually only showering or washing me on the bed, the rest my hubby does for me) and he does things that I don't want them to do anymore because they are not careful enough like unbandage my wound where my cathether goes into my belly....... and if I have the "wrong" person at my bed that I know is not careful, I let them wash me but hubby does the rebandaging and cleaning after she's gone, he combs my hair and washes my intimate parts and then makes sure I have everything I want before he starts to do something else...... and if I want something else, I only have to ask and he does it for me with love...... so I am not kidding when I say he takes real good care of me....... and I am very grateful for that...........
I don't know what to do or say anymore that gets rid of the frustration of hubby..... I ask him to pray with me, and he does, and then he joins me in watching something...... or holds my hand or hugs me carefully...... or reads to me from the Bible...... we've been through the letters of Paul 3 times now...... but somehow that seems the most appropriate to read........
I feel horrible because of these pains, but he feels bad too....... we're still very much in love after 5 years but this is one difficult challenge to face.....
Does anybody have any idea how to handle this?

Love you all lots,
Mieke

**Jeanne D** · Nov 26th 2009, 05:38 PM

Bless your hearts, miepie.
I'm so sorry you're suffering so much. I know it hurts your husband to see you hurting because he loves you so much.

It sounds like you're doing everything the two of you can. Praying together, reading the Bible, holding one another etc.. is the best you can do. If you have some praise music, maybe you can put it on and listen to it too.

Would putting a hot water bottle or heating pad in the area of your bladder, soothe the pain?

I will be praying for you (both). I am so sorry for your suffering. Just remember that Jesus is right there in that room with your husband.

May He comfort you and heal your pain.

Love,
Jeanne xo

**Lady e** · Nov 26th 2009, 10:56 PM

What is causing the pain?I am so sorry you are going through this.I am touched that you come on here and try to help others when you are hurting so badly-may GOD bless you richly for that!I know that cranberry juice or pills are good for the entire bladder/urinary tract.Heat-like Jeanne suggested might give you some comfort.Drink enough water,dehydration is bad for all of your body.Also magnesium,just the plain vitamin,can help muscle spasms and pain.I truly hope you get relief.GOD-bless

**miepie** · Nov 26th 2009, 11:20 PM

Thank you Jeanne.....

Heat sometimes works but when I have those extreme pains I just can't have anything touching my bladder so heat is not pleasant then....... sometimes Charles gives me hotwaterbottles for my feet and in my back so I get warm all over..... it's nice but it doesn't change the pain........

I can't take cranberry juice/pills because it irritates my bladder even more, and magnesium is not allowed with my meds, I already take muscle relaxers..... and I drink more than enough water too........

The pain is either caused by my cathether through my belly or RSD..... and no doctor can tell me for sure that if the cathether would go out that I would get rid of these pains..... besides that I would be wet all day again and we don't want to go back to that....... now I am sometimes wet, and sometimes 4 times in the same afternoon...... so that's really frustrating........
And if it's RSD nothing can be done.........

Thanks for the support ladies..... in spite of the pain I did have a nice anniversary day.....

Love you lots,
Mieke

***moonglow*** · Nov 27th 2009, 02:05 AM

Personally I would rather wear an adult diaper myself then do a cath because the risk are high for infections (read that on medical site) and can do other damage to the bladder. I realize though you have tried everything and would rather do that. I don't think I could stand it. I had one once for a short time in the hospital and felt like I had to empty my bladder constantly..meaning it made me feel like I had to go to the bathroom though it was emptying my bladder. But this is very personal of course and your choice of course and like you said the pain might still not stop. Again I would rather try and see if it would stop and do the diapers...but that is just me. I would rather deal with the wetness then the horrible pain. (that is if the pain would even stop...might take awhile for the bladder to settle down and stop spasming).

The reason I bring this up in the first place is because you asked about how to help your husband deal with your pain from this. So maybe you should discuss it with him. He is hurting emotionally as you pointed out. If this would help lessen your pain it might be worth it for his sake, if he doesn't mind helping you change throughout the day.

Second...if truly nothing can be done to stop the pains then chal needs to really get with God on his own and ask the Lord to give him peace with this. That he needs to accept the fact there is nothing he can do to help you and be at peace with it...(of course ask God if there is anything he can do to help lessen your pain which I am sure he has already).

I can only image the struggle he is going through. One time Nate had a bad allergic reaction to an antibiotic and suffered horrible pain and itching from it. Both of us got little sleep that whole week so we were exhausted. I was frantic taking him to see several doctors to get him some relief. Finally at one point, at one in the morning he was crying in my arms and all I could do was helplessly cry with him. At least I could do that...

I could not begin to image if his pain never stopped. I would be forever trying to find a way to stop it...I wouldn't give up. There is nothing worse then watching a loved one suffer and being helpless to stop it.

I will pray for him, that the Lord give him strength through this and that the Lord help you both find some relief from this.

God bless

***livingwaters*** · Nov 27th 2009, 02:51 AM

My heart goes out to you and Charles. God's Word says to cast all of our cares upon HIM...I know you and Charles are walking in Faith, just by your posts. God is capable of taking this away in an instant. Is that HIS Will? I don't know. But, I pray that HIS Will be done in HIS time....HIS Will and HIS time are always perfect!! May HE rain down favor and healing on you that you may glorify HIS Wonderful Name!

God bless you and Charles!

**Twin2** · Nov 27th 2009, 03:45 AM

Sounds like your husband is wonderful and giving. I've read different posts from either of you in the past, and it sounds like he really is devoted to you. It's not easy being a caregiver anyway, and then to be caring for the one that you love, takes an emotional toll. I'm sure he depends greatly on the Lord to help him, not only through this, but relies on the Lord to help him to help you.

No advice, because as another stated, sounds like you are both doing what you are supposed to be doing, relying on God.

**miepie** · Nov 27th 2009, 11:30 AM

Thanks for the encouraging words and advice.....

Julie, Charles and I have talked about the option of removing the cathether and we both came to the conclusion that's not an option..... We've done that in the beginning of our marriage and it was horrible...... besides 2 weeks ago I had episodes where I lost half of the content of my bladder and it made us both very frustrated..... so no way I am going back there....... besides, I don't want to end up with bladderpain AND incontinence..... if it's RSD that will happen........ and that's a big chance as the doc can't find anything wrong with my bladder or the cathether.........

I know Charles is leaning on Daddy for his strength..... and I know we will get through this...... it's just hard to see him suffer too....... he has pain too and I feel bad about that as well..... it's not easy having pain and at the same time having to take care of somebody, the laundry, the house and the animals....... sometimes he complains but mostly he just does it.......... he rests regularly behind his computer to drink tea or just sit for a while...... it's a good thing he has to move for his arthritis....... so taking care of everyone and everything is a good thing for him....... but I so wish I could help........

Love you all lots,
Mieke

***bc3n1*** · Nov 27th 2009, 02:17 PM

Praise You Lord for all these beautiful ladies and sisters in You. I thank God for all of you.

Miepie, so much wonderful advice and love to you and Charles is so evident. I can only say along with everyone else, that God's will be done and if it is bringing us through pain and suffering in this world so He can be glorified, so be it. I pray that He give you and Charles all the perserverance in each and every second of your lives to His glory.

I, too, live in constant pain and physical distress with this leukemia. I, too, have had well intentioned people tell me to work at being healed and I was to walk in total health in the here and now. Made me question my faith in the Lord. Then, I decided to put it entirely in our Lord's hands, receive His love, His care, His grace, and His healing of this body, soul, and spirit, all to His praise, honor, and glory. Precious one, I pray for peace and comfort for you.

Yes, I, like Charles and the others, would love to lift you out of your pain and disease immediately. Everyone loves and prays continuously for you and everyone in this Board that suffers from any cause. That is a reason for praise to our Lord, Who suffered and bore griefs for us.

If it is any consolation, I'm crying with you.

Love in Christ,
bobbie

***moonglow*** · Nov 27th 2009, 05:46 PM

Originally Posted by miepie

Thanks for the encouraging words and advice.....

Julie, Charles and I have talked about the option of removing the cathether and we both came to the conclusion that's not an option..... We've done that in the beginning of our marriage and it was horrible...... besides 2 weeks ago I had episodes where I lost half of the content of my bladder and it made us both very frustrated..... so no way I am going back there....... besides, I don't want to end up with bladderpain AND incontinence..... if it's RSD that will happen........ and that's a big chance as the doc can't find anything wrong with my bladder or the cathether.........

I know Charles is leaning on Daddy for his strength..... and I know we will get through this...... it's just hard to see him suffer too....... he has pain too and I feel bad about that as well..... it's not easy having pain and at the same time having to take care of somebody, the laundry, the house and the animals....... sometimes he complains but mostly he just does it.......... he rests regularly behind his computer to drink tea or just sit for a while...... it's a good thing he has to move for his arthritis....... so taking care of everyone and everything is a good thing for him....... but I so wish I could help........

Love you all lots,
Mieke

Ok I see..I thought one time you said it wasn't an option but I wasn't for sure on that.

All then you and I can do and many others on here that care for you both, is keep praying for him. That the Lord gives him the strength to carry on and pray your pain lessens too! I would suggest that Charles, if possible, watch alot of inspiring video's on the computer or read alot of inspiring Christian notes. He really needs that right now. (so do you). You both need to fill your minds as much as possible with stories of Christians going through difficult struggles and maintaining through the grace of God. I know there is alot in the bible but we all know those stories by heart. I think you both need to see current events of people struggling through difficult times whether its from illness, disease or war, or other trials and how God carried them through. I think it would refresh your spirits and give you both the strength to carry on. Later I will try to find some thing for you. (gotta go take care of my sisters dog now that is at my mom's for the weekend..lol).

I had a card I sent to you both but it came back to me cause the postage went up...

I was four cents short on the stamp. I thought I could just add another stamp it too but then I saw they did their stamp thing over it...so I am not sure that would work. So I am going to have to take it down to the grocery store where they have a post office and ask them what I am suppose to do..if that one stamp is ok, or if I have to put a new stamp over it.

ugh. Otherwise you two would have it by now.

I will try to get that taken care of today or tomorrow.

Praying for you both!

**miepie** · Nov 27th 2009, 05:57 PM

Originally Posted by moonglow

Ok I see..I thought one time you said it wasn't an option but I wasn't for sure on that.

All then you and I can do and many others on here that care for you both, is keep praying for him. That the Lord gives him the strength to carry on and pray your pain lessens too! I would suggest that Charles, if possible, watch alot of inspiring video's on the computer or read alot of inspiring Christian notes. He really needs that right now. (so do you). You both need to fill your minds as much as possible with stories of Christians going through difficult struggles and maintaining through the grace of God. I know there is alot in the bible but we all know those stories by heart. I think you both need to see current events of people struggling through difficult times whether its from illness, disease or war, or other trials and how God carried them through. I think it would refresh your spirits and give you both the strength to carry on. Later I will try to find some thing for you. (gotta go take care of my sisters dog now that is at my mom's for the weekend..lol).

We just saw Fireproof yesterday..... that was an inspiring movie! Maybe I'll order another Christian movie....

maybe for New Years Eve or so......
I hope the dog doesn't bite!

I had a card I sent to you both but it came back to me cause the postage went up...

I was four cents short on the stamp. I thought I could just add another stamp it too but then I saw they did their stamp thing over it...so I am not sure that would work. So I am going to have to take it down to the grocery store where they have a post office and ask them what I am suppose to do..if that one stamp is ok, or if I have to put a new stamp over it.

ugh. Otherwise you two would have it by now.

I will try to get that taken care of today or tomorrow.

Praying for you both!

Oh dear...... I had a card returned to me because they couldn't find the number of the address...... while it DOES exist!

American mailmen eh?

I sent it to another address and now it arrived.....

Had to use a new envelope and stamp for that one, but it was worth the cause....... making a little girl happy.......

Thanks for the prayers!

Love you lots,
Mieke

***moonglow*** · Nov 27th 2009, 09:02 PM

Originally Posted by miepie

We just saw Fireproof yesterday..... that was an inspiring movie! Maybe I'll order another Christian movie....

maybe for New Years Eve or so......
I hope the dog doesn't bite!

Oh dear...... I had a card returned to me because they couldn't find the number of the address...... while it DOES exist!

American mailmen eh?

I sent it to another address and now it arrived.....

Had to use a new envelope and stamp for that one, but it was worth the cause....... making a little girl happy.......

Thanks for the prayers!

Love you lots,
Mieke

No the dog is a sweetheart...a cute little dog. My sister's daughter..my niece, saved up her money for this dog five years ago. She could only get a certain type because of her and her brothers allergies. So she got a Bison Frise.

The worse part was getting through all that hair to find the hook on his collar to take him out to potty...

And its a beautiful day out so I wasn't freezing or anything.

Actually when I got done with him instead of going to the store like I planned I ended up coming home and taking a nap...just got up in fact...

Sure didn't want to get up this morning. Now to get woke up and try again here after a bit..lol.

Yea I have heard great things about that Fireproof movie. Since I am not married, no reason for me to watch it. We watched the movie "The secrets of Jonathan Sperry" that was in theaters not too long ago. It was a really slow start but turned out to be a really good movie.

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There are other really good ones out there..probably many you could watch on youtube...

Now this one isn't a movie, but they have many video's on youtube about him..he was born with no arms and no legs. He has part of a foot at the end of his body he uses for alot of things. Amazing story for sure:

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And laughter is always good for the soul...

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I read laughter helps make people healthier...happier and its good exercise! lol

Oh...Christian Comedians!!! oh boy!

here is one I thought was funny..

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Here is a long list to choose from.

http://www.youtube.com/results?searc...=Christian+com

God bless

***Equipped_4_Love*** · Nov 27th 2009, 09:38 PM

Hello, Meike;

I, too, am sorry for what you are going through. I can certainly understand your husband's frustration, and yours, too.

I think everyone here has given really good advice, so I don't have much to add, only the fact that since your husband isn't really responding to your telling him that he is doing more than enough, rather than trying to re-assure him, since it is discouraging him more, perhaps you can sort of just try a different approach.

If he expresses that next time, just let him know that you understand his frustration, and that you love him for everything he is doing. Of course, your husband is just a man, and he can't do everything, though deep inside he probably wants to, because he is your husband, and he wants to be strong for you.

Just let him know that you appreciate everything that he is doing, and that he can't do everything, so what he can't do God can do, and is doing. Just let him know that you understand his frustration, and that you love him and appreciate him for all that he is doing.

Just re-assure him that you thank God for him, that you know that God is in control, and you are grateful for all of the ways that your husband does help you, even though he thinks it isn't enough. I am just saying this because, since he isn't responding to your re-assurance that he is doing more than enough, try taking a different approach, and see how he responds. Just let him know that you understand his feelings, and that you love him for what he does do.

Anyhow, I hope that helped. God bless you, sweetie, and I will pray for you and your husband.

**ShortStuff** · Dec 1st 2009, 05:50 AM

Miepie,

My prayers go out to you and your hubby for all you are going through..

I am so sorry you must go through this, but I want to tell you that you are such a blessing on this forum. I want you to know that God is using you mightily here sometimes even through your illness, and I have no doubts that He is using you everywhere you go..
I just wanted to let you know that His love shines through every word that you type on this forum...I don't really have any advice as you seem to be on the right track, but I do slightly understand how much it hurts to see your hubby hurt for you..Poor Buck shot dreads giving me the daily shots

...it is actually sort of funny because his face is worse than mine when it is shot time (and I have always been shot scared)... I know this is very minor to your problems, but it definitely hurts him when the lupus is flaring and he cannot do anything about it..
Anyway, I just felt God was telling me to encourage you with how much you allow Him to work through you...I know this does not help your pain, but I pray it offers some encouragement.

**miepie** · Dec 1st 2009, 11:37 AM

Thanks ladies....

Thanks ShortStuff for your encouraging words...... thanks for giving me that message..... it does help......

Thanks for praying for us too...... that helps as well........

We just had a visit from the minister...... he can't do much either but he listened and prayed with us and he blessed us....... and we agreed that he would come visit us every 2 months to see how we're doing...... so that's very nice of him...... he was happy to see Charles do better now he has his orthopedic shoes and the effect of the new diet on him, but he was sad to see me in so much pain...... he loved the Christmascard that I made for him.....
He's very compassionate and understanding and it's always encouraging to have him over.......

It's all still very painful...... for both of us..... thanks for praying for us.... please continue to do so........

Love you all lots,
Mieke