Discussion in 'Caregivers' started by DogBoy, Feb 22, 2002.

  1. DogBoy

    DogBoy New Member

    Hi all. I come to this board every couple days too, and it's too bad to see so little activity. I like to see what others are going through, but I don't always have a lot to say.

    I'm feeling a little extra-frustrated this week. I work as a computer programmer in my day job. The pay is great, but I hate it. I hate being inside all day, sitting all day, and dealing with the corporate types instead of regular people. I started doing it about 6 years ago(2 & 1/2 years before my wife got sick) and only planned to do it for a few years to pay off some debt and be able to buy a house. So much for that plan.

    My real passion is dog training and behavior. I have a nice side business doing that, and I could easily make a living at it if Sara were healthy. It's just not stable enough with her sick though. Doctors and supplements and experimental lab work are expensive, and who knows what experimental treatments might come along and what they may cost. Plus, there's no room for risk in our lives. The stress that would result from a big financial set back - especially if we lost our house or anything - would be so hard on her. Health insurance is a big concern too. So entreprenership is out for now. I just have to get up every morning and go to a job I can't stand.

    Most of the time it doesn't bother me much. CFS puts things in perspective. I'm very grateful to be in a position where I can provide for Sara's needs (short of the big one, a cure). I see how much she suffers and most of the time I truly am grateful just to be able to walk, and drive, and sit up all day at any job at all.

    This week's just been tough. I went to a dog training conference last weekend and spent a lot of time with people living the life I want. I'm tired of giving up dreams for this DD. I haven't lost nearly as much as Sara has, but it still sucks.
  2. Pixie

    Pixie New Member

    Long time no see, I do read you loud and clear, you sound so down today, have posted before,in case you haven't read it, I want to tell you my past month, my 40 year old daughter all her life was misdiagnosed, over the years 3 doctors said she had cfs, gave her meds, like serzone, zoloft, all it did was put her down, and I mean to bed, she did not cook,clean, take care of her 3 children, let herself go, to the point of gaining lots of weight, I kept going to doc apt with her, listning to them, thought they were doing all they could for her, WRONG, when she told me she did not want to live, then took overdose, I called to have my presious daughter to be taken away to mental hospital, they said she was on all wrong meds, for wrong diagnoses, she is Bipolar, manic depressed, on depakote, and doing, not just good, she is doing great. lost weight, went to beauty shop, got her husband back (which is another story) I can't say enough about her, do you know I thought of myself as being a good mother, well ya know, why didn't I see this all these years, she has missed out on so much, so please, and mabe you have, but get the right diagnoses, fna the right treatment, you may be surprised, these doctors put this child to bed, put her down, for many many years, they treat these people daily, and give wrong meds that make it look like all symptoms of cfs, when it is not that at all, this is my lesson, and a hard, long drawn out one, if I can spare just 1 person from the agony that my daughter has gone thru for all these years, then I cannot feel it was all in vane, mental hospitals are a good source, I am not ashamed at all, just glad we can now go on with our lives, and have my daughter be a part of it.
    Thanks to all who listen, been ther, done that.
    p.s. DogBoy, I know of 6 dogs that need lots of training, 3 belong to my youngest daughter, 2 to my oldest daughter, these are my grand doggies but they are spoiled rotten.[This Message was Edited on 02/22/2002]
  3. mom

    mom New Member

    Sorry you are so down right now. I have a couple of suggestions which might bring your dream a little closer.
    Open an account where the interest is the best you can get. Add to it every payday and never take it out. This you could call your medical emergency fund. When you stop working with computers you would have the money necessary for if Sara needs some treatment or new drug.
    Make sure you would have the clientelle to support your business and really build on that while still employed.
    Start cutting back on frills now and by the time you are ready to spread your wings you won't feel deprived of them as you would if you went cold turkey.
    While working and cutting back you would be putting all the money into the med. account and you should by the end of the year have quite a nice fund which you would still be adding to for emergencies.
    hope these help
    mom lynda
  4. DogBoy

    DogBoy New Member

    Thanks you guys. I'm feeling much better after a restful weekend. Pixie, I was very happy to read about your daughter getting the right kind of help. I was always raised to take responsibility for my own healthcare, and Sara and I have never just accepted what the doctors say. We've researched everything we can get our hands on: adrenal fatigue, vitamin deficiencies, leaky gut, SSRI's, a huge host of supplements, mycoplasmas, lyme, stealth viruses, special diets you name it. I've learned more about endocrinology, immunology, and nutrition than I ever hoped to. We won't stop until we've found a way to at least give Sara something that vaguely resembles an active life.

    Your advice is well-taken too Lynda. We already have our savings started and contribute to it religiously. I'm not great at avoiding the frills if left to my own devices, but Sara's pretty good at keeping me in check. I actually have a written plan for getting out of my current field and doing my dog stuff full time. It's gonna take 5 - 7 years, but I will get there. So things really aren't that bleak. It's just frustsrating sometimes. This DD just takes away so much that sometimes even a little extra rememinder of what I'm missing can send me into a real funk. I usually get over it in a couple days, but it's nice to have a place to vent.
  5. annee

    annee New Member

    Life can be a bit like marking time.
    And as tough as it is on partners with these dd's, it is still very real that these dd's are tough on us too.
    I have been having 'my own' tough time lately (just panic & anxiety symptoms (bad) & early menopause - I am not going there!!).
    I have been continuing on our treadmill life path and feeling very taken for granted and very unappreciated.
    It all 'blew' about a week ago.
    Some tough times were had and a few things have to be worked through.
    Upshot of this was that GB has shown me in many small ways that he does appreciate me.
    Teenage sons - no change - not surprising.
    I guess GB just needed a reminder that he is not the only person in our world who is having a tough time right now ( just that his tough time is so constant and debilitating).
    I can at least work through my tough times and make them 'bearable'.
    We are doing self and us nurturing - which is vital for us to keep going and yet something we have to ocassionally remind ourselves to do.
    Hang in there,
    bestest to you and Sara,