Acceptance (But Not Complacent) - UPDATE

[Madalot]

I have come to the point where I am ready to accept that the therapy I am getting (Trilogy Ventilator, using S/T mode with AVAPS) is providing me the best treatment I will be able to get at this time. The awakenings and daytime fatigue are a permanent part of my life and it's time to accept it and learn to cope.

I have emailed my pulmo and unless she really, really thinks there's something there to address, I'm good with stopping all this at this point.

I plan to speak to my neurologist (if he ever calls me, but I have been waiting over three weeks since I called about something else, and now another week since my pulmo said she spoke with him) and run a few things by him, including the fatigue (and possible medication for that -- thanks SU). If nothing else, I'm scheduled to see him in September.

I met with my new Respiratory Therapist (DME sold out to a major chain DME). He seems very nice and is okay with working with me in the same way I have been as far as the ventilator is concerned. He said as long as I don't modify the therapy MODE on my own, he's okay with my making other changes that make me comfortable. We discussed guidelines already in place by my doctor and he's comfortable that I won't do anything stupid.

He agrees about leaving me on the Trilogy (and not switching me to other equipment). Even though I could probably get by on a bipap with a backup rate NOW, my condition will continue to deterioriate and the Trilogy will be able to handle whatever is needed down the road. He believes the Trilogy is the best of the ventilators his company offers.

He agrees that my daytime naps are an issue and is working on a way for me to be able to move the Trilogy to the family room during the day, then back to my bedroom at night. He believes the Trilogy can be placed on a pole (like IV's in hospitals). If we can't get that worked out, he has said that a second machine in my family room would be okay (I'd have to purchase outright and used is all I can do, if I can do it at all), but is adamant that it have a backup rate. A regular bipap is not sufficient, in his opinion, to handle my situation even for short naps. The fact that I have been sleeping in my recliner, with nothing, is definitely a big no no, but we already knew that. But he did express an understanding of my desire NOT to get into bed every afternoon. He said that in my situation, it would be depressing, which I think IS one of the reasons I have resisted it and continued sleeping in my chair, even knowing the risks.

I want to thank everyone that has stood by me and supported me through all of this. It's appreciated more than you know.

I am now officially saying that my condition is effectively treated.

[fuzzy96]

maddie while i am glad you are coming to terms with your condition and treatment i do hope that you don't become complacent . keep yoour eyes and ears open for there may come a time or place where new insights will improve things for you.

[newhosehead]

Well, I just read what you said in your other thread about where you are now..and that it is good. I am glad it is and glad that you trust your instincts about what is right for you at this time. Hopefully, you will be able to get the nap situation resolved and perhaps SU's suggestion about medication will be of some help as well. I am in your corner.

Jeanette

[Madalot]

maddie while i am glad you are coming to terms with your condition and treatment i do hope that you don't become complacent . keep yoour eyes and ears open for there may come a time or place where new insights will improve things for you.

No, I won't get complacent, but I recognize a losing battle when I see one. However, I am in the process of being tested for a specific neuromuscular disease as part of a research study. A major university is researching if people diagnosed with Limb Girdle Muscular Dystrophy (my 2nd diagnosis), Mitochondrial Myopathy (my current diagnosis) or Muscular Dystrophy of unknown etiology (been there too) actually have late onset pompe disease. My symptoms, including respiratory and gastrointestinal problems, are classic symptoms of LOPD.

I was accepted into this study and sent the bloodwork to the lab yesterday. I should hear something in 2-4 weeks on that. If I test positive, additional testing will need to be done, by my neurologist, but if it ends up that this is what's going on, there are treatments available that can slow the progression.

So no, I won't be complacent. Even if I test negative, I WILL advise my doctors of any significant changes in my respiratory therapy.

Well, I just read what you said in your other thread about where you are now..and that it is good. I am glad it is and glad that you trust your instincts about what is right for you at this time. Hopefully, you will be able to get the nap situation resolved and perhaps SU's suggestion about medication will be of some help as well. I am in your corner.

Thank you! You know that I appreciate it very much.

[rosacer]

You are in my thoughts Madalot.

Rosie

[snuginarug]

((( mad )))

I really don't know what to say, except that we're all here for you.

I am extremely glad your RT is going to try to put your Trilogy on a pole. That would solve one big problem. I know the nap in recliner/nap in bed thing has been really hard to handle.

I've got my fingers crossed about the LOPD, and getting some medication for the stomach issues.

[scrapper]

I admire your feelings today...........but recognize that tomorrow you may be mad as heck again. It's a grieving process, just like with any other loss. You are such a wonderful example to all, as you continue to learn everything, advocate effectively for yourself, and kick & scream when you get less that you need or deserve.

We all need a bit of Madalot in our lives for ourselves!

Love you Maddie!

[HoseCrusher]

This is bullshit!!!

We have some of the best minds and wonderful equipment, and there isn't a way to improve your quality of life. That just plain SUCKS.

OK, now that I have that off of my chest, I accept your acceptance, but I am still looking for something better.

Still thinking of you...

[Madalot]

You are in my thoughts Madalot.

Thank you so much. I appreciate this.

((( mad )))

I really don't know what to say, except that we're all here for you.

I am extremely glad your RT is going to try to put your Trilogy on a pole. That would solve one big problem. I know the nap in recliner/nap in bed thing has been really hard to handle.

I've got my fingers crossed about the LOPD, and getting some medication for the stomach issues.

Thanks, snug. I really appreciate your good thoughts.

I either need to nap in bed (which I don't want to do) or my husband and I have talked about him moving the Trilogy in the mornings before he leaves so I CAN sleep in my chair with it (until the RT/DME figures something elseout).

I told my husband last night that this RT has a way of saying something, without pissing me off, but getting his point across quickly. He also explained, quickly, why the other modes on the ventilator didn't work. And his explanations made sense.

I admire your feelings today...........but recognize that tomorrow you may be mad as heck again. It's a grieving process, just like with any other loss. You are such a wonderful example to all, as you continue to learn everything, advocate effectively for yourself, and kick & scream when you get less that you need or deserve.

We all need a bit of Madalot in our lives for ourselves!

Love you Maddie!

Thanks so much, scrapper. I thought about this myself too. And I may get angry again. But a major part of my change in attitude is a wonderful person here looked at my sleep study documentation and gave me insight which really helped me come to this point. It's good.

This is bullshit!!!

We have some of the best minds and wonderful equipment, and there isn't a way to improve your quality of life. That just plain SUCKS.

OK, now that I have that off of my chest, I accept your acceptance, but I am still looking for something better.

Still thinking of you...

Awww...HoseCrusher. You're sweet to be pissed off on my behalf.

One of my biggest problems, all around, is crossing a line from not giving in to my disease to borderline denial about its seriousness and the consequences of it.

The anger and frustration was eating me alive. It was making it difficult to function in any capacity. Something had to give...

[BlackSpinner]

One of my biggest problems, all around, is crossing a line from not giving in to my disease to borderline denial about its seriousness and the consequences of it.

The anger and frustration was eating me alive. It was making it difficult to function in any capacity. Something had to give...

Just be sure your acceptance is about the disease and not the inadequate treatment you have been experiencing - Never accept second best.

Do you have a therapist to help you deal with the emotional issues the disease and its treatments raise?

[Madalot]

One of my biggest problems, all around, is crossing a line from not giving in to my disease to borderline denial about its seriousness and the consequences of it.

The anger and frustration was eating me alive. It was making it difficult to function in any capacity. Something had to give...

Just be sure your acceptance is about the disease and not the inadequate treatment you have been experiencing - Never accept second best.

Do you have a therapist to help you deal with the emotional issues the disease and its treatments raise?

LOL -- In truth, it's acceptance of all of it, good and bad. I don't want to accept that some of the treatment I've gotten is substandard, but it's really hard to keep fighting it.

A couple years ago, I saw a therapist because I was having a lot of trouble coping with my situation and the changes I was having to make. Her answer to me was to get down on my knees (yeah, right lady) and ask God to cure me and he would.

I never went back and decided that if she was the best I could get where I live (therapy is hard to get where I live) I was better off being sad...

No offense to those that have strong religious beliefs. I am not discounting them, but for a therapist to say that to someone like me...well, I don't think much more needs to be said.

[BlackSpinner]

LOL -- In truth, it's acceptance of all of it, good and bad. I don't want to accept that some of the treatment I've gotten is substandard, but it's really hard to keep fighting it.

A couple years ago, I saw a therapist because I was having a lot of trouble coping with my situation and the changes I was having to make. Her answer to me was to get down on my knees (yeah, right lady) and ask God to cure me and he would.

I never went back and decided that if she was the best I could get where I live (therapy is hard to get where I live) I was better off being sad...

No offense to those that have strong religious beliefs. I am not discounting them, but for a therapist to say that to someone like me...well, I don't think much more needs to be said.

That was part of the substandard treatment. I would have reported that one. There must be others in your area. Referral is best. There are many types of therapist that do different styles and sometimes it is hard to find what meshes with yours. I have also walked away from therapists whose style didn't mesh with mine, my one was of the "All life is pain, accept it, karma" (Buddhist).

[Lori Dawn]

Hey, Maddie,

A couple years ago, I saw a therapist because I was having a lot of trouble coping with my situation and the changes I was having to make. Her answer to me was to get down on my knees (yeah, right lady) and ask God to cure me and he would.

I never went back and decided that if she was the best I could get where I live (therapy is hard to get where I live) I was better off being sad...

I agree with you on that one! You were not going to church, you were seeking help coping with your situation! That was very inappropriate for her to say, and I wouldn't have gone back either! How would she explain all the faithful people who pray for healing and don't get it? Are they less deserving than someone else in God's eyes? I DON'T THINK SO! I think if you would have continued to see her, you probably would have been worse off than you were before, in that you would have felt like you failed if you didn't get "healed," complicating things even further! Good call in not going down that road!

While I am a spiritual person, I don't think prayer always gives you the answers to everything. While faith is good to have, we are all human and need practical help coping in the physical world, and counselors should apply real world emotional therapy and support. If everyone could heal themselves with prayer, there would be NO NEED for doctors OR therapists! I believe prayer and meditation CAN help comfort you, but it doesn't ALWAYS give you the practical help you need in that way.

I wish there was another counselor you could see, but if that's your only choice, you're better off without her! I definitely wouldn't want to see that one either!

Lori "QF" Dawn

[Madalot]

I just got off the phone with my neurologist. I called his office since I hadn't heard from him and his assistant said if I could HOLD for a few minutes, he would take my call.

After speaking with my pulmo, he agrees that the afternoon fatigue IS a problem and that we need to figure it out. She sent him my information from my last sleep study and he believes the leg movements ARE contributing to my daytime fatigue. He wants me to try Requip. I will be starting that today or tomorrow and he wants me to call him in two weeks (or before if I have any problems).

He said that I have so much going on, and so many issues, and he wants to do what he can to help. He said he moved my appointment up because he felt that a year was too long between appointments, considering all the problems I'm having.

I was able to voice A LOT of my concerns about everything, but was very careful NOT to bash my pulmo (other than to say I felt she wasn't listening to me about the back sleeping).

I AM still saying that the ventilator is adequately treating my breathing issues, but WILL work with him on the daytime fatigue.

Oh, and he didn't call me an "enigma" but he made it clear that my situation has got all of them scratching their heads.

[HoseCrusher]

Face it girl... You just want to dance.