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Thread: At a loss..What next? Any ideas..at the end of road.

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    hi....thanks much...i'll take all the hugs i can get! i'll let you know...pharmacy doesn't have all my medication...i'm going to be taking folic acid too so we'll see how that goes.....thanks much for your thoughts and hugs back at ya! take care....todd.

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    Since you are open to hugs of understanding, comfort and support....let me send you a big warm one. I, too, hope that the injections work for you and that the folic acid helps!

    BIG HUGS!!!

    Saysusie
    Look For The Good and Praise It!

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    hi ss....nice to hear from you...! thanks for your support...i'm fairly nervous about it as time goes on...waiting for the medication...i'm praying i don't get super sick...i am really not good with vomitting and high fevers...hopefully this will help some...what a nightmare though....not alot of choices out there for medications....sigh...hopefully some advances will be made someday talk to you soon....take care...hope things are well with you...todd.

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    Hey Todd,

    Is the cancer that the doc wants you to check out adeno carcinoma? or Barretts esophogus? My dad died of that last year and I have been told that I have the beginnings of it. Can't do anything but take nexxium. Oh well.....

    I am praying for you and your kids,

    Karen

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    Squeeze...I remember you PIF...

    A new year, new thoughts can be trying. Thinking another year of this, egads. Me, I took up dreaming, denial for Oh-eight. The unknown, beyond is a scary thought regardless if we have faith and knowing it will happen because of a cause instead of it just being the process of a life lived.

    I too wish there was a magic pill..sometimes our mind can be that magic. Tuck us away in a safe mental spot and filling us up with the things we can do. Enjoying and savoring the tiny moments. It works then we fall in a hole again. Dang hole, eh?

    Awhile back you mentioned being on Xanax worked for your mood, feeling wonderful but feared addiction. Being at a stage of terminal fear not of addiction. Addiction to me means when one starts to lose control of their life, it's spiraling out of control, damaging a quality life but I wouldn't think that in your case. Being terminally ill coupled with many diseases it isn't really a quality life is it? A life worth living despite the lack of optimal quality, oh yes indeed. If, it keeps you level, not sedated or comatose why not? If it can bring you enjoyment and some fulfilment, hey why not. Consult your doctor. No one should be in mental anguish and pain.

    I remember when I came out of surgery, hours later my pain was seeping through...pressing the nurse light, them coming in, I requesting pain pills and hearing them say it wasn't time. With a stern look, and flat toned I uttered. Time? Is the pill not named pain. Or is the pill in pain? No pain, no pills..I am in pain and I want my pills. Usually I am a good patient, in the end I received my magic pill.

    I've dosed with every kind of pain pill from asprin to morphine and being aware of possible addiction I knew the signs...and you will too because you question and worry of a possible addiction. I never became an addict in the sense we are taking about. I never used it for a high, if you cross the line and it is used soley for a high then it becomes a true addiction. As with anxiety pills, if they treat the anxiety then addiction (high) shouldn't surface. Stop the medicine there will be withdrawals as with any mind, CNS altering drug. It's a given. Am I babbling or sounding coherent?

    Gosh I hope I don't sound like a pill pusher...

    Put that hot poker down...or put some marshmallows on it. Being a diabetic, you do get your eyes checked regularly, eh? Any bleeders behind the eyes? Affects the vision. My father does and has them cauterized with laser treament. I thought to cut off my legs when they hurt something awful at night, hack, whack with an axe. Off with my legs and not my head.

    If you lived in the UP, Upper Michigan..motto "Someplace special'..or do you? I'd asked my brother to come and take you snowmobiling, ATVing. Bundle you up in a snowsuit and sorrels and blaze through our 40's. Wheeeeeeeeeee. Toss ya on a saucer and pull you through the drifts of snow too.

    Hope the new meds is doing its purpose...and there is another mile in your road.

    Till laterz...hugs, a pinch and prayer.
    Oluwa

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    Hi Karen:

    Nice to hear from you. Its Barrett's is what they are thinking. I've been on nexium for a long time so not sure what the treatment would be....I don't know anything about this condition 'yet' - I will - but does it make you throw up alot...doc's are thinking that it has to be 'something' making me so sick all the time - because no one gets sick on plaquenil, imuran, methotrexate etc. - except me - lol....I've always been very sensitive to medications so I do think that is part of it - what the other problem is - who knows!

    Everything is sorta overwhelming to be honest when it comes to Lupus. I'm still learning about 'flares' but I seem to be almost in a constant state of a flare..I get rashes on my face and hands - sometimes both sometimes one or the other...right now I have both...Its like this disease just doesn't give up...I remember some holistic site and it said to take something - I can't remember it right now - its poisoness though - and it would flush out the Lupus...sounded a little crazy to me - if it was so easy everyone would be doing it...

    Anyway, I'm sorry to hear of your situation. How did you get diagnosed? Last time I had an endoscopy - before I was sick it was nearly an ER situation - my BP dropped to 40 over something I can barely remember I was passing out for hours...anyway, now with low BP I can only imagine what might happen....

    Talk care and talk to you soon....Todd.

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    Oluwa...wow nice to hear from you....and how very thoughtful you are! Great imagery of being outdoors...I live near Chicago so its not too far from the UP! I'll be right up!

    Anyway, I agree with your comments on addiction and enjoyed your story about getting your drugs...at this point I'm thinking of taking the doc up on some valium...my oldest son is determined to put me in my grave...i'm actually thinking of kicking him out and having him join the military he stresses me so much...i worry when he's out, when he's home doesn't do anything to help - but eat tons of food, fight with his brother and act like my wife and i are the worst parents in the world....mind you the poor thing is on his 2nd car we've bought - this current car being a BMW 325i - eyes rolling...i know mistake..i feel bad because i'm dying so i want to give my kids what they want...and a kick in the teeth is what i get back...my poor 10 year old does help alot...more than he should to be honest...can't get the older one to take out the trash...anyway, i need to be quiet and thankful.....and patient.....

    he's up...gotta run...take care....todd.

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    Todd,

    Me being 46... at 18, when I was, you moved out onto higher education or a job. Never considered staying in the nest past 18 nor did we consider it as being kicked out..it just was. You left when you were 18, adulthood.... I have 7 sibling and we all flew at 18. In such a few short decades, wow how things have changed, eh?

    I understand how you want to give your boys everything, material items..but ah times... some times a lesson on life is the ultimate gift. It's a gift that keeps giving back to the child even when they're 46.

    Stress instigates Lupus..I hope a day will come soon for you when your son will communicate and present himself like a young man, a father's son and realize his father's time with him is not indefinite, but finite.

    I am sorry your gestures of love have not been appreciated.

    Do they rent snowmobiles there? Lots of snow in Chicago.

    Are your back sores, pressure point sores, Todd or rash sores? I have a rash like on my hinder...days it like pea size sores, bleeds and others day like dry patches and poof another day smooth as a baby's. I suspect Lupus as I have a patch above my navel, malar facial rash and oh a patch of the crude on my upper back. All which come and go. I've scratched so hard in my sleep sometimes..it leaves streaks, spaces like the tongs of a rake bruising from my fingers clawing at it. I keep my nails clipped...

    Have you been caring for the sores though, do they look like skin ulcers? Sometimes moisture with pressure can cause an ulcer even friction, constant rubbing. Have you had it checked out by a physican?

    I can't wait till tomorrow...it could just get better for you, for me, for all of us...

    Enjoy the night and sleep well,
    Oluwa

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    hi...

    usually a fair amount of snow here...however, usually have to go a bit up north to go snow mobiling...

    thanks for your comments about my son...the aliens will bring the real one back one day...

    i'm watching the sores...red spots i guess...never had this before...i will have them looked at....just behind scheduling appoinments...i think i'm actually burnt out on going to the doctor!

    sorry...gotta run....its late...been a tough few days....talk to you soon....take care...todd.

  10. #20
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    Hey Todd,

    I get sick on plaquenil, prednisone and anything practically that I put in my mouth. I am burning and nausious right now.
    I have been diagnosed with barretts. The good news is that it is slow moving and they think if I take nexxium and do not throw up or feel acidy then the barretts will be stopped.........Of course, at the time of that diagnosis the docs were unaware that I had lupus also.
    I do hope that the nexxium helps with your nausia..I will pray for you on that one.
    In the meantime please accept a big cyber hug....squeeze........

    In Him,

    Karen

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