Saturday, July 25, 2009

I hate this damn disease!

I had a lot of trouble sleeping last night, because all night I was struggling to breathe, even with the bi-pap mask on (which usually helps a lot). It felt like there were tight bands around my chest, and I could take only very shallow breaths. Maybe if I had come a little more awake I would have taken some morphine or done a nebulizer treatment, but I was in a half-awake state where I just wasn't thinking (kind of like one of those nights when you're awake enough to know you need another blanket but not awake enough to actually go and get it).

When I woke up for good around six I was feeling really miserable--exhausted from lack of sleep and the effort of breathing. Lauren is on call this weekend, and I've spoken with her several times today. She had me doing nebulizer treatments every couple of hours, and things finally eased up by early afternoon--I'm breathing more easily and no longer feel that intense tightness in my chest. But it's left me feeling very weak--I'd love to take a shower but just don't have the energy. I've been relaxing on my lounge chair, watching TV, dozing, and talking with Judy, who is here all day as Marty had things he needed to do.

It is so hard to feel myself getting weaker and weaker. Everything is becoming more of a struggle--the last few times we've been out, it's been a major effort to get from the house to the car. Once I'm in the car, I can slowly catch up with my breathing, but it becomes one more obstacle to getting out and doing things.

I had an e-mail this morning from someone at Jacob's Pillow--good news and bad news. The facility is reasonably accessible and it sounds like they will figure out a way to deal with any problems, but there are no tickets left to see Jason Samuels Smith, which is very disappointing. I will look over the rest of the schedule and see if anything else appeals to me. It would be a lovely drive out to Western Massachusetts and Marty is always interested in the two of us doing things together, even with whatever obstacles we have to deal with (I say we, but of course it all falls on him).

I am just so sick of being sick!


  1. Hi Judi,

    I know what you mean about being sick of being sick.

    I am really sick of it.

    It is 3 yrs since my MS diagnosis and I have gone from walking and independant to needing help 24/7 and to lying in bed 24/7.

    This is since last August with no prospect of getting better just progressively getting worse.

    I know there is no prospect of recovery only getting worse with the only light relief I can let my doctor know whne I have had enough and she will come by and administer a drug that will put me to sleep and kill me.

    It is not a pleasant prospect but better than lying here unable to talk, to type and to even see and swallow,

    I know about all of this have chosen the euthanasia and yet every now and then I do a second take as I realise that even though I am doing my best I will never get better!

    I just can not understand how this gets me time and again.

    Maybe because we have grown up believing that the doctor will make you better and this time they can't do that for neither of us.

    I wonder of you recognise that too?

    I try to makw the best of the good that is in my life like my darling Richie and friends and still being able to be here and now.

    Hope you have a good day tomorrow, will be thinking of you.

  2. Dear Judi,

    I've been reading your blog often and had forgotten until now that I had the option of posting a comment. I see that you are really struggling to make the most out of the time you have left on this earth and I admire you for that. I hope it is a bit of consolation to know that I'm thinking of you and sending love,


  3. Dear Judi - Yes it is awful to deal with all of this illness. It was scarey to read about your struggle with sleeping and breathing last night. For myself, I was just trying to Skype with my 8 yr old granddaughter but had a pain attack so had to hang up. This breaks my heart. Anyway, just wanted to let you know that I am still thinking of you and reading your blog. You remain an inspiration!
    Love, Sally

  4. Hey Judy, I'm sorry you had a rough night last night and that things aren't going well for you today. I agree that the hardest thing to deal with must be the loss of not only your independence, but the ability to do even the simplest things simply because you "will" it. I think by far that lung diseases are the most insidious, holding those who suffer from them prisoner inside a body that can see the world outside and all it has to offer, but can't be a part of it the way they want to. Life truly is contained in our very breath. I continue to pray for you as you go through these struggles. I am so happy that you are having a Life Celebration Event. I think it's the most wonderful idea I've ever heard, to celebrate life with those we love while we are still here to enjoy them and share memories with them. Although I am not suffering from a life limiting illness, and cannot imagine what you are going through, if I had anything to tell you it would be to remember that, as your world becomes seemingly smaller, you are still a vital part of a much bigger picture. The impact your entire life has made on those around you will resound for years to come, and the intimacy you share with us as we read your blog will touch each of us in so many different ways, impacting how we interact with those whom we meet. Keep strong, because you have alot of us behind you!

    Kristen <3