Doctors Appointment - How it Went

JohnBFisher wrote:Sounds as if you did a good job of communicating with your doctor. Good for both of you. I agree it sounds as if your doctor is both careful by nature and careful due to experience. The phrasing and caution would tend to indicate that.

I'm pulling for you and praying that things continue to stabilize. Hopefully the RT/DME situation will also stabilize.

Best wishes!

Thanks for this, too, John. It wasn't until I went back through my previous threads that I found there were a couple of things I forgot to ask her about, specifically tests that several have suggested we might want to do. I am so angry at myself for forgetting and not writing those things down. I remembered to ask her about modifying the Inspiratory Time and Rise Time, but totally forgot about asking her about a full pulmonary testing and/or arterial blood gasses.

I have thoroughly cussed myself out for this too.

Mad, go easy on yourself, you've got a lot on your plate which must be overwhelming. Sometimes even when I write things down I still forget to ask when I'm with the Dr. Are these questions something you could discuss with her by phone?

DoriC wrote:Mad, go easy on yourself, you've got a lot on your plate which must be overwhelming. Sometimes even when I write things down I still forget to ask when I'm with the Dr. Are these questions something you could discuss with her by phone?

Thanks Dori -- yeah, my plate is pretty full and I really haven't shared the half of it!! My husband and I are raising other people's children, having adopted from the foster care system in 2003. These children (teenagers now - uck!) bring a special set of issues and problems that can make parenting a huge challenge. In truth, had I known about my medical condition prior to taking them in as foster children, we probably wouldn't have adopted them. By the time we found out about my situation, the kids had been with us for several months and were doing so well that the local social services concluded they'd still be better off with us than being moved elsewhere, most likely separate foster homes (they're biological brother and sister). So, we decided to adopt them despite my medical problems. I don't regret it, but sometimes it's really challenging and overwhelming.

They're good kids and the situation was tough on all of us before, but the breathing issues have really increased the stress level to almost "eye rolling" proportions. It's just really hard sometimes.

As far as talking with my doctor, I could call her, but I also have the option of email, which she prefers. Most of the doctors from this university hospital take advantage of email with their patients, which can be a blessing and a curse at the same time! I might drop her an email and just ask her, but I might also just wait until my next appointment since she really feels I am being effectively treated at this stage.

Oh -- I increased the Inspiratory Time last night from 2.0 to 2.7 and found it extremely comfortable. I'm not sure why, but it "seemed" as if my breathing was more regular and the vent wasn't needing to kick in as often.

I'm not at all surprised that someone like you would foster/adopt children. The world needs more like you. I'm glad I'm not raising teenagers today with all the bad stuff out there. I'm proud of my daughter for raising 2 such lovely young ladies(18 & 21). The older one just graduated Sunday Magna Cum Laude with Honors and the younger girl finished her Sophmore year on the Dean's List. (They take after Grammy ). I'm glad you had a good night, maybe now we're getting somewhere!

I think parenting teenagers has always been challenging, but with technology today (internet, cell phones, texting) it's very hard to keep them in check. We never wanted to give our kids texting, but we found that this is how kids today communicate with each other and not allowing them to have it makes it very hard for them to keep friends. Stupid in my mind, but it's the reality of the world we live in. It's a fine line between giving them the things they want (and borderline need to be accepted by their peers) and teaching them to handle those things appropriately. If I had a dollar for every time I've disabled texting, I'd be able to take myself out to a nice dinner!!! Considering we haven't even had texting a year yet!!

Raising foster children, especially those that don't come into care until they are beyond the formative years like mine (they were 6 and 4.5 when they came to live with us), is very hard. The stories I could tell about things that have happened, behaviors we've had to deal with and just all the "weirdness" -- I should probably right a book! Sometimes when I think of all the stuff we've dealt with, I'm amazed that my family is as normal as it is!!

But back to the ventilator -- I did find the increased Inspiratory Time better. I'm having a hard time correlating the Inspiratory Time and Rise Time in my head to determine which (or both) need adjusting and how much. I've tried to go back through my threads but am finding myself even more out of my element than before. Oh well -- I'll just keep playing now that I have my doctor's permission until I find what seems to be the best.

Hello Madalot,

I am glad to hear you are making progress, and doing so well with the doc! I always screw up my appointments - write everything down before, but can't think on my feet, screw up my answers, don't even get the intent of questions they ask that aren't prescripted by me.

Then I obsessess for a few days about the email I should send to followup, but eventually let it go ... I can't always find the right level of communication, their time is so limited, and I'm not even quite sure what I want or expect from them .... Messy!

Kids? Crazy crazy on top of my normal stupidity! My wife told my 11 year old to come help me find a game in the closet last night or "he will stand there for 5 hours looking for it." True. At least I am mostly benign though!

When you get a chance, could you check out this thread? A person just getting on AVAPS, struggling with a BPM of 18 and a tidal volume of 550. I was going to refer them to some of your older threads, but thouht you might have a better idea of which settings are discussed in whch threads.

viewtopic/t52502/Whoa--Adjusting-to-18- ... inute.html

So hard to have to depend on the 3rd parties just to try to get comfortable for something so basic as breathing rates!! They have 10 minutes once a week to be distracted by a question. You have 24x7 to struggle and fight with a machine, and obsess about technical serials that barely make any sense ...

All similar to struggles to get adequate pain medications and then to stay balanced, deal with side effects, etc too I think. When I first went on fentanyl years ago, I didn't know about withdrawl from opiates. I went off of the patch to try Lyrica instead. I thought it was the Lyrica that was making me twitch and sweat and spin and lose my mind - sort of like Linda Blair!! What an idiot ... I was going through full blown physical withdrawls .... brother-in-law and family were visiting for the weekend - no-one told me .....

At least there is no psychological dependency.

Cheers!
Michael

Madalot wrote: What sweet things for you to say. Pretty timely, too, because I've borderline gotten myself into that "I don't want to do this anymore" and "I just don't care" mood again.

Here are some pre-packaged CBT "dialogues" from our friend Aleeping Ugly that might just apply here. If not, I am sure she could write some generical-but-cynical-satirical-sounding platitudes to crush our last effective tool, positive thinking!! Cribbed from that other big thread, around page 55:

SleepingUgly wrote:

blizzardboy wrote:I can tell you that my joint pain seems to be shaping to something that resembles that associated with FM. I don't like to admit this because I don't want to have a poorly-understood disorder.

I'm typing with a splint on my wrist. My knees suddenly hurt and last month was the 3 year anniversary of my feet hurting continually. My EDS has been misdiagnosed since my first sleep study 19 years ago. So my view is that any correct diagnosis, even poorly understood, is better than no diagnosis or an incorrect one.

Let's try some CBT right now:

I just want a meat-and-veg type of problem that is fixed with a not-tested-on-fuzzy-animals-guaranteed-not-to-have-nasty-side-effects-over-the-counter medication, or with an easy-to-buy-setup-and-use device such as an ASV. Tada...problem solved. I don't want to have the ill-defined problem that requires a well-managed, multi-pronged treatment regime including exotic massages, bleeding-edge drugs, ADMs and hours of mind-stretching CBT.

How are these thoughts making you feel? Cruddy, huh? OK, let's change them to: "I would prefer not to have these problems. But if I do have these problems, I can handle it, even if the solutions are not so straight-forward or immediately forthcoming. I have handled a lot of tough things in my life and I can handle this too." How ya' feeling now?

Now this one:

I don't want to have the ill-defined problem that requires a well-managed, multi-pronged treatment regime including exotic massages, bleeding-edge drugs, ADMs and hours of mind-stretching CBT. Am I really going to end up with a diagnosis of UARS and FM to explain to my work colleagues and try to convince my GP about? Forced to dabble in acupuncture, touchy-feely massages, meditation in a pyramid, and consumption of foods that might as well have been extracted from a worm farm? Get me that PFT...now!

Restated: "Somehow UARS and FM don't feel to me like legitimate diagnoses. I would rather have something more serious to justify the extent of my symptoms, with serious medical equipment needed to treat it. I don't want diagnoses like depression, anxiety, fibromyalgia, and other ones that others won't take seriously."

Counter: "This is not entirely rational. Are these disorders really not legitimate ones? Is it true that there are only touchy-feely therapies for these disorders or is it possible that science has more to offer than just worm farm extract?"

Feel better??

P.S. Mother loves me more than she loves you. She just doesn't know how to show it because she just loves me soooo much that it's overwhelming for her. Nah nah nah nah nah nah!

I have to say that I am a big, big believer in meditation! I couldn't imagine having made it this far without it. It would also be tgh last thing I would give up - after pain medications, ASV, etc. Along with it's close cousins, relaxation tapes, visualization, and progressive relaxation. It is often easiest to get started listening to a tape to walk me throug it when cognition I'd all whacked and pain won't let me focus. For those days spent with the blankets pulled over your head ... at least you can di that with CPAP!!

Cheers!
Michael

unadog wrote:I am glad to hear you are making progress, and doing so well with the doc! I always screw up my appointments - write everything down before, but can't think on my feet, screw up my answers, don't even get the intent of questions they ask that aren't prescripted by me.

Then I obsessess for a few days about the email I should send to followup, but eventually let it go ... I can't always find the right level of communication, their time is so limited, and I'm not even quite sure what I want or expect from them .... Messy!

This is EXACTLY how I feel here. Thanks for saying it in this way. It's funny because as I was reading this, I said to myself "Exactly!!" I think I might need to prepare that email and send it to my doctor. Even if she says they aren't necessary, it would be good to know why she hasn't done the ABG and full PFT.

unadog wrote:When you get a chance, could you check out this thread? A person just getting on AVAPS, struggling with a BPM of 18 and a tidal volume of 550. I was going to refer them to some of your older threads, but thouht you might have a better idea of which settings are discussed in whch threads.

viewtopic/t52502/Whoa--Adjusting-to-18- ... inute.html

So hard to have to depend on the 3rd parties just to try to get comfortable for something so basic as breathing rates!! They have 10 minutes once a week to be distracted by a question. You have 24x7 to struggle and fight with a machine, and obsess about technical serials that barely make any sense ...

Thanks for pointing me to this. I hadn't seen it yet (bad night last night and I wasn't on the site much). I've skimmed it and will chime in on it soon.

unadog wrote:All similar to struggles to get adequate pain medications and then to stay balanced, deal with side effects, etc too I think. When I first went on fentanyl years ago, I didn't know about withdrawl from opiates. I went off of the patch to try Lyrica instead. I thought it was the Lyrica that was making me twitch and sweat and spin and lose my mind - sort of like Linda Blair!! What an idiot ... I was going through full blown physical withdrawls .... brother-in-law and family were visiting for the weekend - no-one told me .....

At least there is no psychological dependency.

While mine isn't too involved, I am dealing with pain medication as well. I know exactly what you're talking about. Luckily, I am on a fairly mild regimin and withdrawl isn't a big issue (hopefully). I'm sorry you're going through this.

unadog wrote:

Madalot wrote: What sweet things for you to say. Pretty timely, too, because I've borderline gotten myself into that "I don't want to do this anymore" and "I just don't care" mood again.

Here are some pre-packaged CBT "dialogues" from our friend Aleeping Ugly that might just apply here. If not, I am sure she could write some generical-but-cynical-satirical-sounding platitudes to crush our last effective tool, positive thinking!! Cribbed from that other big thread, around page 55:

SleepingUgly wrote:

blizzardboy wrote:I can tell you that my joint pain seems to be shaping to something that resembles that associated with FM. I don't like to admit this because I don't want to have a poorly-understood disorder.

I'm typing with a splint on my wrist. My knees suddenly hurt and last month was the 3 year anniversary of my feet hurting continually. My EDS has been misdiagnosed since my first sleep study 19 years ago. So my view is that any correct diagnosis, even poorly understood, is better than no diagnosis or an incorrect one.

Let's try some CBT right now:

I just want a meat-and-veg type of problem that is fixed with a not-tested-on-fuzzy-animals-guaranteed-not-to-have-nasty-side-effects-over-the-counter medication, or with an easy-to-buy-setup-and-use device such as an ASV. Tada...problem solved. I don't want to have the ill-defined problem that requires a well-managed, multi-pronged treatment regime including exotic massages, bleeding-edge drugs, ADMs and hours of mind-stretching CBT.

How are these thoughts making you feel? Cruddy, huh? OK, let's change them to: "I would prefer not to have these problems. But if I do have these problems, I can handle it, even if the solutions are not so straight-forward or immediately forthcoming. I have handled a lot of tough things in my life and I can handle this too." How ya' feeling now?

Now this one:

I don't want to have the ill-defined problem that requires a well-managed, multi-pronged treatment regime including exotic massages, bleeding-edge drugs, ADMs and hours of mind-stretching CBT. Am I really going to end up with a diagnosis of UARS and FM to explain to my work colleagues and try to convince my GP about? Forced to dabble in acupuncture, touchy-feely massages, meditation in a pyramid, and consumption of foods that might as well have been extracted from a worm farm? Get me that PFT...now!

Restated: "Somehow UARS and FM don't feel to me like legitimate diagnoses. I would rather have something more serious to justify the extent of my symptoms, with serious medical equipment needed to treat it. I don't want diagnoses like depression, anxiety, fibromyalgia, and other ones that others won't take seriously."

Counter: "This is not entirely rational. Are these disorders really not legitimate ones? Is it true that there are only touchy-feely therapies for these disorders or is it possible that science has more to offer than just worm farm extract?"

Feel better??

P.S. Mother loves me more than she loves you. She just doesn't know how to show it because she just loves me soooo much that it's overwhelming for her. Nah nah nah nah nah nah!

I have to say that I am a big, big believer in meditation! I couldn't imagine having made it this far without it. It would also be tgh last thing I would give up - after pain medications, ASV, etc. Along with it's close cousins, relaxation tapes, visualization, and progressive relaxation. It is often easiest to get started listening to a tape to walk me throug it when cognition I'd all whacked and pain won't let me focus. For those days spent with the blankets pulled over your head ... at least you can di that with CPAP!!

Thanks, Michael, for the kick in the butt. In all truth, I usually try to be more positive and look for the good in the situation rather than dwelling on the bad. What happens, at times, is that when I feel overwhelmed with problems, I find it more difficult to stay positive.

I frequent another board that has several adults with neuromuscular disease. There are times that just reading some of their struggles and issues makes me appreciate MY situation all the more. And I'm sure that for some of them, reading MY struggles, like the breathing, makes them appreciate that they aren't dealing with that at this stage. There's one woman whose husband is just not supportive of her at all. He's judgmental and makes it very difficult for her. Every time I read that it first makes me mad for her, but then makes me appreciate MY husband all the more.

I'm going to be okay, because I always am. I just get into these moods sometimes where the circumstances (like dealing with teenage attitudes) makes it harder for me to be positive. But I usually come around in a day or so.

Madalot wrote:
Thanks, Michael, for the kick in the butt. In all truth, I usually try to be more positive and look for the good in the situation rather than dwelling on the bad. What happens, at times, is that when I feel overwhelmed with problems, I find it more difficult to stay positive.

I didn't mean that as any sort of criticism, or suggestion of a "shortfall" on your part!

I think we all know here that you are doing an outstanding job dealing with all of the complexities of your health and life! I only meant it as a bit of comic relief, and maybe to elicit a groan of "yeah, I know what I am supposed to do, but screw it - I want to whine for a bit!"

My own whine was about something small from 6 years ago. But we really are left to our own devices by our doctors sometimes, with no specific knowledge about what we are dealing with! I guess it is impossible tyo expect that they transmit much information in the 30 minutes every 4 months or so that we have to spend with them. But the "toys" that they give us to play with sure can get a bit out of control without expert guidance!

Now I have to take GumbyCT's advice and quit posting at night when zoned on Ambien! That would make my posts much more linear. Plus I was supposed to be **sleeping**, which is the whole goal of all of this ...

Thank you for sharing so much. I am glad you are doing well with the doc!

Best,
Michael

unadog wrote: I didn't mean that as any sort of criticism, or suggestion of a "shortfall" on your part!

No worries there. Didn't take it as a criticism at all! Please don't give it a second thought.

unadog wrote: Now I have to take GumbyCT's advice and quit posting at night when zoned on Ambien! That would make my posts much more linear. Plus I was supposed to be **sleeping**, which is the whole goal of all of this ...

Thank you for sharing so much. I am glad you are doing well with the doc!

Personally, I find your posts very "linear" whether you are zoned out on Ambien or not!! LOL Seriously, I find your insight very helpful.