I'm Around - Sorry to Worry Anyone

[Madalot]

I've gotten quite a few PM's and emails from friends here asking what's going on. I really hadn't planned on posting anything, but once I realized people were getting concerned, I thought I'd better post something.

I'm doing okay on the Mirapex and am supposed to call my Neurologist on Tuesday and let him know. I am assuming he will increase the dosage since I seem to be able to tolerate it.

I am regretting telling my doctors that I was having trouble breathing at night. Doing that seems to have sent me on a course that has me spiraling downward with no good answers in sight. Yes, we have me breathing pretty well most nights, but a "side effect" is a lot of awakenings with horrendous daytime fatigue that is ruining my life, which wasn't that great before. I appreciate them getting off the "supine sleep" bandwagon and looking at the leg movements (thus the Mirapex) but am already figuring out that IF that's the problem and we do fix it and I don't wake up as much, staying in one place too long will result in significant leg pain.

And this constant nausea is just another issue that is incredibly hard to handle.

It seems like no matter what we do, fixing one problem causes another.

I saw my primary care physician on Monday and went to pieces in his office. I had sent my husband off somewhere else, thus allowing me to be totally open and free with my doctor and not having to worry about upsetting my hubby. I told my doctor that I felt there were too many cooks in my kitchen and how I was sinking down into an abyss of despair that I didn't see a way out of. He nodded at me, patted me on my head, told me I was a nice lady and to hang in there, said he'd see me 6 months and walked out.

My new Respiratory Therapist is coming out Wednesday for a monthly "clinical" visit, required by the new DME. I'll talk to him and see if he has any new insight (he seems on the ball from the few times I've talked to him) but I don't hold much hope.

I am at a point now where I am seriously considering stopping all respiratory therapy and medication and just letting the chips fall where they may. The ONLY thing stopping me is my husband and how much it upsets him when I say that.

I appreciate all the concern many of you have shown.

[Katt]

Well if nothing else ... that was tactless and crass of your primary care physician .... damn ....

[scrapper]

"A penis or a brain..........nobody gets both......." Tell us that physician was a male?????

While not all guys are this way, many lack that feminine gene that allows them to care about another being......

You cannot control others, only how you respond to them.........

You (and your entire family) remain in my thoughts and prayers, hoping that the feelings and thoughts and outcomes you have right now will be sunnier in days to come..........and you find peace in the decisions you must make to find that sunshine in your life!

[jbn3boys]

I'm glad you are posting...I was just about to add another PM to the list. I'[m so sorry this is all so hard on you. I can understand your frustration, but I still hate to see you struggle. I wish there were something I could do to encourage you, to help you, or to ease your burden. Depression hurts SO bad. I just wish there were something I could do. Just know that I'm here, and I understand (as best I can), and I care.

I saw my primary care physician on Monday and went to pieces in his office....(snip)... He nodded at me, patted me on my head, told me I was a nice lady and to hang in there, said he'd see me 6 months and walked out.

I'm still trying to pick my jaw up off the floor! How incredibly rude! I still wish there were a single doctor that was willing to "be in charge" of all your care, but it is obviously NOT your PCP.

[HoseCrusher]

It is great to hear from you... but I wish you had better news to share.

While I don't have answers for you, I know that it is not in your nature to hang it all up. It is my nature to believe that there is an answer, but it sure is being elusive.

Still thinking of you and looking for an answer.

[BlackSpinner]

Hugs Madalot.

Keep on chugging for those you care about, any reason you can. Keep trying different combinations that allow you to live some life with them.

Too bad your husband wasn't there to kick that so called doctor across the room.

[beckah]

Hi Madalot. You don't know me but I have followed your threads and know a little about your medical condition and the obstacles you have been facing.

I am appalled by your doctor's action (or should I say, lack of action). I hope you find someone in the medical profession that will take charge of your case and coordinate with the rest of your medical team.

Even those of us that haven't "met" you, feel your pain. You are in my prayers. Hang in there Maddy.....don't give up. Never give up!

[snuginarug]

I wish your husband had been there too, he's got a mighty big foot, and I'm sure he would have known where to put it. I too am appalled. Basically, he charged you for doing nothing. See you in 6 months to do what... nothing? Again?

I wish someone, somewhere could somehow find some little help for you. Your position is rotten.

You're in my prayers.

((( hugs )))

[chunkyfrog]

So glad to hear from you;
but sad to not hear better news.
I believe we are here for a reason:
If we do not understand what that purpose is;
then maybe our purpose is to hang around and inspire others,
simply be there for our loved ones,
or some small thing we may not even consider.
Buck up; try to smile a little; know that even strangers love you.
Fight the good fight.

[kteague]

((((((HUGS)))))))

[JohnBFisher]

I've gotten quite a few PM's and emails from friends here asking what's going on. I really hadn't planned on posting anything, but once I realized people were getting concerned, I thought I'd better post something. ...

I sure wish I had words of wisdom for you. It's bad enough to have to deal with others, who do not understand. It's horrible to have a doctor, who should know better, treat you that way.

I would love to be able to tell you it will get better. But it won't.

I do understand that all too well. I love going out and enjoying time out with my wife. We enjoy seeing new cities and museums and restaurants. But I find that doing more than two things in one day causes me to overload. I literally reach the point where I can no longer understand what is going on around me. Considering that I made a career of sorting out very difficult problems, this situation frightens and depresses me. Knowing that it will only get worse drags me to the edge of despair.

So, why don't I fall into that abyss? I wish I knew. Part of me naturally takes the lemons and makes lemonade. Part of me tries to enjoy the moment. Part of me reaches out to others. Part of me holds onto a personal faith. But I still dance at the edge of the abyss.

Part of how I deal with my situation is to admit where I am and not blind myself to it. For example, I decided to get a service dog. That will help me maintain my balance and mobility and as much independence as possible. The dog will help with mobility. He can help me retrieve things (since I find I am dropping things more and more). A dog can also help me provide a buffer between myself and the world, which can become overwhelming.

So, yes. I do understand. I do *not* have any good answers for you. Unfortunately, you will need to find those yourself. And I know that is not easy. You may want to find someone to whom you can talk. A pastor / rabbi / imam or perhaps a therapist. But it does help to talk out your situation with someone you trust. You need to be able to explore your own situation and fears without having someone else (spouse) worry about what you are saying.

Though I can do little else, know that you are in my prayers. May you find peace.

[jbn3boys]

Beautifully written, John!

[bailachel]

I'm so sorry to hear of your continuing problems but very glad you posted. I will continue to send positive energy in your direction. Hang in there! We are all pulling for you.

[Slinky]

Oh, pooh, Maddie. (((hugs)))

[SleepingUgly]

So are you just as tired on the Mirapex as you were before the Mirapex?