Oh Lord, give me strength...

[minkydog]

You know, some days I don't know whether to laugh or cry...Between dealing with Christian and his vertigo, and DH and HIS vertigo & lung issues I think I'm going to lose my mind. Hopefully, Christian is on the upswing now, but DH isn't improving. I took him back to the doctor today for a recheck/ His recent CT scan reveals some worsening of the lungs and he will need oxygen for the near foreseeable future. DH is so fatigued, no stamina at all. Sometimes he'll have a little burst of energy and he'll run around for a little bit trying to get things done, which of course, simply drains him that much quicker. Then he's wiped out for about 3 hours. His chest hurts all the time and he never feels like he caan get a good breath. As hot as it is, he can't be outside for more than a few minutes at a time, always with the oxygen.

Today the doctor advised him to increase his Prednisone to 60mg daily for 2 weeks, then 50mg for 2 weeks, etc. Ugh. This will not be pretty. And now DH is saying he doesn't want to take it. But we know he has lesions from his lung disease in his brain and the treatment for that is--mega-doses of steroids. So the hope is that a Megaburst of Prednisone will stablize and reduce the inflammation in his brain and hopefully that will remedy the vertigo.He's scheduled for a brain CT scan next week. THe steroids might help the lungs too.

I don't blame him, I wouldn't want to take all that prednisone either but I think it needs to be done. I'm trying to remain even-handed about it, though. It's his body and his brain, after all. I need to support him in whatever he decides on. But, boy, it's hard. It's hard.

If ya'll see me running nekkid down the road screaming, just toss me a couple Xanax, wouldja?

 

[Magic Mom]

I'm sorry you have this all on your shoulders.

 

[Mary•Poppins]

Hugs to you.

 

[autumnpalm]

Oh, minkydog- I can't imagine the stress you are under. You have so much on your plate and just from reading your posts, you deal with it so graciously. Your family is so lucky to have you and I'm so sorry for everything you are having to endure. Don't forget to take good care of yourself! Sending big hugs.

 

[DebD4T]

 

[minkydog]

Thanks ya'll. I try not to be so whiny. It's just that Christian just pooped his pants about 10 minutes ago(this, after he completely wet the chair & himself at physical therapy today and had to go home.) Obviously, he's not feeling good, probably related to the vertigo. Fortunately, his nurse is here so he's cleaning Christian up while I deal with DH. I can't wait until bedtime--I'm exhausted!

 

[clh2]

minkydog- I don't think that many of on the DIS could tolerate a fraction of what you have on your plate every single day. Feel free to whine any time!

Hang in there...we are here for you!

 

[momof1princess]

i know sometimes it's hard to carry all the weight your shoulders you really are an amazing woman. feel free to vent anytime, it helps to share the load a little sometimes

 

[krcit]

Oh, minkydog- I can't imagine the stress you are under. You have so much on your plate and just from reading your posts, you deal with it so graciously. Your family is so lucky to have you and I'm so sorry for everything you are having to endure. Don't forget to take good care of yourself! Sending big hugs.

You said it better than I could have.

Minkydog, sending you good thoughts and strength vibes

 

[Luv Bunnies]

 

[dismichelle]

I saw where you responded to my other post, so I do know what you're dealing with as far as your DH and his disease. My DH has that same disease in his lungs and on his spine, and sometimes I think it may have gone to his brain as well.

Hugs to you. How long has your DH been on the prednisone. Mine has been on it since being diagnosed (almost 2 years ago), and is projected to be on it for at least a decade, currently on 10mg, but was at 100mg for a while.

I'm sorry and can't imagine being in your place right now.

 

[minniecarousel]

ahh....not sure how you make it through the day!

Prayers for all of you.

Hang in there.

 

[minkydog]

I saw where you responded to my other post, so I do know what you're dealing with as far as your DH and his disease. My DH has that same disease in his lungs and on his spine, and sometimes I think it may have gone to his brain as well.

Hugs to you. How long has your DH been on the prednisone. Mine has been on it since being diagnosed (almost 2 years ago), and is projected to be on it for at least a decade, currently on 10mg, but was at 100mg for a while.

I'm sorry and can't imagine being in your place right now.

DH has been diagnosed with sarcoidosis in his lungs for about 7 years. He actually developed it in his brain (neurosarcoidosis) about 2 years earlier but they didn't know what they were dealing with, just "nonspecific scar tissue." When he got the lung biopsy 2 years after the brain biopsy, everything fell into place. The neurosurgeon took a second look at his slides and sure enough, there it was.

DH has been on Prednisone for 7 years. At one point they decided to switch him to Methotrexate, a chemo drug, which has fewer (or more palatable) side effects. He did well on the Methotrexate, but never could get off the Prednisone. Any time he approaches going lower than 10mg/day he gets very ill and ends up in CCU. So now he takes both drugs. And a whole bunch more.

I guess the thing is, DH has been fairly stable this year. He had a serious lung infection in December and that took him a couple months to recover from, but this whole spring he has been pretty good. It just feels so sudden that just in the last 2 weeks everything has gotten worse and for no good reason. I"m hoping the Brain CT is okay. He used to get MRIs done, but after he got his pacemaker (due to sarcoid in his heart ) he can't get an MRI. CT scans won't show as much, but it will show if there's something really big happening in there.

 

[minkydog]

ahh....not sure how you make it through the day!

Snickers and orange sherbet (I'm diabetic--that's my fallin' off the wagon food)

 

[Deesknee]

I wish I had the strength & courage you have. Sounds like you have the right to whine all you need. Judging from your post you have faith. I hope it's okay if I add you to my prayer list tongiht.

 

[minniebeth]

One day, one minute at a time~