At The End of My Rope

jmcsmomma wrote:

Madalot wrote:
I am exhausted, weak, cranky (bitchy is more like it). My daughter looked at me this morning and informed me that something I asked her we had already discussed and said that my memory is going. Great. She thought it was funny. I don't see the humor in it.

I think/feel/believe that if we could get this damned vent set up better, some of these other issues *might* lessen or disappear.

I need this fixed, but am running out of patience.

Sorry -- This is a whiney vent (no pun intended).

I missed quoting the part where you have MD. My mom has MD, and other than being unable to walk for a long time, she had no complications until about a year ago. Long story short, her diaphram is paralyzed, and if she gets on her back to sleep, it nearly kills her, literally. Could you possibly have that beginning?

I am so sorry about your mom. What type of MD does she have? Do they know?

This is exactly what is happening to me, but we caught it early. I reported in September 2009 to my neurologist that I was having trouble breathing at night. It wasn't critical at the time, but it was very noticeable to me as I had to prop myself up on pillows and make sure to stay on my side.

My pulmonologist is at a University Hospital and they recently put the patient records on line. Her official diagnosis for me is diaphragm paralysis. I started out on cpap and failed, went to bipap and failed and now use a ventilator non-invasively (like a bipap but with other things going on). We're trying to find the "sweet spot" to allow me to breathe AND sleep fairly well through the night. The only thing we HAVE accomplished fairly well is keeping my oxygen levels in the 90's most of the time (only occasional desats now), so that's good, but the price for that is that I wake up a ton during the night and still sometimes have trouble breathing even with the ventilator.

Yep -- so that's what I'm dealing with.

She has charcot-marie tooth I spelled it wrong, but have the name correct. She was found twice by my sister, blue in the bed, and after several icu visits, they figured it out. I have no idea if she uses a vent, or it's all postional, I don't get to see her too often.
I hope you find that sweet spot soon.

Just wanted to drop in and send a hug from another person in your cheering section. Hoping that the next study will offer some ideas to help you be more comfortable and get some much needed rest. If you didn't try you wouldn't know.

jmcsmomma wrote:She has charcot-marie tooth I spelled it wrong, but have the name correct. She was found twice by my sister, blue in the bed, and after several icu visits, they figured it out. I have no idea if she uses a vent, or it's all postional, I don't get to see her too often.
I hope you find that sweet spot soon.

Again, I'm very sorry about your mom. I'm still searching for the "sweet spot" sometimes wondering if I'll ever find it. I try not to get discouraged, but it's not always easy.

Pugsy wrote:Just wanted to drop in and send a hug from another person in your cheering section. Hoping that the next study will offer some ideas to help you be more comfortable and get some much needed rest. If you didn't try you wouldn't know.

Thank you. It's been so long that I don't remember what a decent night's sleep feels like. But...doing nothing isn't going to get me there, so it's time to bite the bullet and just do a study on whatever equipment they have. Better than doing nothing.

Madalot wrote: But...doing nothing isn't going to get me there, so it's time to bite the bullet and just do a study on whatever equipment they have. Better than doing nothing.

You got that right! More data is good. It gives your team that much more to work with. I really really really hope that your push forward to get things done bears fruit soon. The last thing an exhausted person needs to do is run from pillar to post coaxing and reminding and otherwise prodding the people who need it. But you do it, I don't know how. Keep it up, your quality of life is worth it. Good sleep, as most everyone here can attest, is important.

Mad, we're all behind you, hoping and praying for you.

((( hugs )))

snuginarug wrote:

Madalot wrote: But...doing nothing isn't going to get me there, so it's time to bite the bullet and just do a study on whatever equipment they have. Better than doing nothing.

You got that right! More data is good. It gives your team that much more to work with. I really really really hope that your push forward to get things done bears fruit soon. The last thing an exhausted person needs to do is run from pillar to post coaxing and reminding and otherwise prodding the people who need it. But you do it, I don't know how. Keep it up, your quality of life is worth it. Good sleep, as most everyone here can attest, is important.

Mad, we're all behind you, hoping and praying for you.

((( hugs )))

Thanks snug. I sent a request to my doctor this morning asking her to send the referral to the sleep lab. Probably should have done it before now, but no use crying over spilled milk. I took the step and sent the request, so now I'm in "wait" mode again until I hear from her and/or the sleep lab to schedule it.

But you did do it, so at least you'll know something's is being done, which for me is a lot easier than not knowing . Let us know when you do when it's happening.

Maddy, I'm so glad you made the decision to go forward with the study. I know you have reservations but perhaps it's the only way they can figure out some possible setting changes that will give you better sleep. You know my wish has always been for a professional to actually observe you at night. I hope this gives you some relief knowing that you've taken that first step to maybe finding some answers. We're all with you and waiting for that update that says things are better.

Madalot, I am so sorry to hear things are not improving for you. I wish there was something I could do to make it all better. I am glad to hear you are going to do the sleep study. Hang in there and know that my thoughts are with you.

rosie

Thumbs up, Madalot, I'm pulling for you.
Keep up the good fight; you deserve the victory.

Thank you, Julie, Dori, rosiefrosie and chunkyfrog --

For the kind words and support. I'm still a little frustrated, but feel better having set the wheels in motion to get the sleep study done. I hope it gets scheduled fairly soon. Let's cross our fingers this doesn't take weeks!

Madalot wrote: I'm still a little frustrated, but feel better having set the wheels in motion to get the sleep study done.

I'm glad to hear at least a little "lift" in your post! We'll take anything positive we can, right?!

Madalot wrote: I hope it gets scheduled fairly soon. Let's cross our fingers this doesn't take weeks!

Amen! (insert smiley with halo here)

jbn

jbn3boys wrote:

Madalot wrote: I'm still a little frustrated, but feel better having set the wheels in motion to get the sleep study done.

I'm glad to hear at least a little "lift" in your post! We'll take anything positive we can, right?!

Yes. Sometimes you have to reach very hard to find something positive to hang on to. Waiting for something to get done frustrates me beyond belief, but I know you deal with that yourself so you understand it.

I'll post an update when I find out when the study is being done and any other specific information I have.

It should be an interesting study.

Sorry,Madalot I haven't checked in for a few days. I'm sorry for what you are experiencing. You were so kind to try and help when I first logged in here, you will always hold a special place in my heart. I'm sending love, prayers, and good 'vibes' your way!

NanceK wrote:Sorry,Madalot I haven't checked in for a few days. I'm sorry for what you are experiencing. You were so kind to try and help when I first logged in here, you will always hold a special place in my heart. I'm sending love, prayers, and good 'vibes' your way!

You're sweet. Thank you.

My road has been rough, but the people on this forum have been such a blessing for me and have helped me navigate the rougher spots. It helps me to give something back when I can.