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pat57
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if you don't mind, can we get an update on how your feeling? My quess is that your being carefull not to engage in a pity party- or the appearance of one.

And so have swung the pendulum to the other direction. IE saying very little.

How are you?

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Hello all!

I am glad that I logged on for a second. I haven't talked to Melissa today at all and just briefly over 'chat' the past couple of days to check on her.

She's having HORRIBLE, excruciating stomach pain that she is not sure of the root cause of.

I hope that she will not mind me posting this update.

She's really not feeling well at all...she had been a bit more stable, but these past few days have been really, really bad.

Also, it just takes her so much energy to do all of her meds and ivs and such that she doesn't have time for much else.

All of the new adjustments and dealing with new realities are a lot right now...

THANK YOU FOR CHECKING ON HER....YOUR TIMING COULD NOT HAVE BEEN MORE PERFECT AS SHE COULD REALLY USE SOME EXTRA HEALING THOUGHTS AND PRAYERS FOR COMFORT AND PEACE.

She has been able to read on the forum and post a bit before this latest saga...so you are right that she has been posting a bit more.

Emily

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I just want to spread some more love, Melissa!!!

Hope you're feeling better soon.

Love and hugs,

Megan

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Oh Mellie, I wan't you to know that I'm thinking of you and sending you the best healing thoughts I can muster...

~~~~~~ ;) ~~~~~~~ (<- that's me concentrating).

nina

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Oh Melissa-

I pray you find a new "normal" and things calm down for you. You deserve peace, happiness and light! Sounds like that tum of yours is not happy with your attempt at "rehab" with tube feeds. Any evidence that it's really helping that small bowel? I pray you figure it out with a minimum of pain and misery.

Heal, sweetie. We love and need you here.

Big Hugs-

Julie

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hello to all. and thanks for checking in with me.

pat - for someone who doesn't know me all that well i'd say you have a pretty good read on me. that is on my not saying much at all being the opposite of where i'm really at, aka in truth i'd probably have way too much to say.

physically, though, em summed it up (she was missing her job as the sunfish update correspondent? :blink: ). technically speaking i'm "stable" in that i'm home, which is of course great, but for the past week and a half or so the pain has been pretty bad. in truth i haven't had a day without GI pain in over a year so i'm used to tolerating a certain level but this is a different degree. and since my doctor hasn't called me or my home care nurse back i eventually had to take some pain meds on my own which i HATE doing without a doctor's okay. and they make me feel really disconnected but right now without them i'm curled up in loads of sharp pain. chances are it's "just" my intestines rebelling against the tube feeding b/c of their dysmotility but they've never given me this much pain before for more than about a day at a time. a day i can deal with....non-stop for over a week i cannot.

i'm having to make decisions about when & how much to play around with the j tube feeds too b/c they seem related to the pain and i don't like not having any guidance on this from a doctor. part of me wants to find a new PCP but that would be so incredibly complicated that i can't even fathom it right now. i have an appointment on friday but in the meantime have been frustrated. and the pain as well as the pain meds mess with my sleep so that obviously doesn't help anything.

i've also been having numerous problems with my mail order pharmacy (which my insurance requires) that has left me out of some meds and has been an endless source of aggrevation. it's still nowhere near resolved and my mom & i have both had to spend hours on the phone.

and yep - the amount of time and energy that my medical stuff consumes is more than overwhelming & exhausting. honestly i hate it & am pretty darn weary of it all. and the fact that people get so darn excited that i manage to get something on other than pajamas or am not in the hospital is wearing on me a bit too. of course those ARE great things, but it starts to feel a bit like i'm 2 years old when someone walks in and says "wow, you got dressed today". and the reality is that i'd like there to be a bit more depth to my life than just managing to stay out of the hospital, ya know? but that's more of another post for another time perhaps. and then there's the whole reality that i'll be without insurance in three months time. but again...another post for another time. and a million and one other things i could ramble on about but won't for now b/c i really don't have the energy...

i am reading though to keep up with all of you....

:lol: melissa

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Sorry you've been sick! Hope you feel better soon.

Next time somebody makes you feel small by congratulating you on dressing yourself, maybe you should just tell them that you're thinking about joining a nudist colony so that you won't have to go to all the trouble anymore! :blink:

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Good to "see" you.

Do you keep a journal? It is my opinion that whatever we experiance has value. You can speak to caregivers and others who are, or may, face debilatating painful health issues. Your paying a high price to be such a voice and I think it would be comforting to others but also for you because there is a purpose behind the ordeal. When others are helped because you have walked a path before them you will be blessed.

I have some experiance in this, haveing been an alcoholic by the age of 18. You can imagine what situations I volentered for. The experiance has given me the ability to help others by which I am blessed. In no way am I motivated to help because there is a return. But I am grateful for it!

I will help you with this- if I can.

Let me know.

((((((sunfish)))))

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Dear Sunfish,

Thanks for checking in. I'm sorry you're so tired and in so much pain. And I'm sorry you have to use so much of your precious energy to try to fix pharmacy and insurance problems. :blink: How aggravating.

When you have the energy, feel free to ramble. :lol:

Meanwhile, we're still thinking about you!

Rachel

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pat -

i'm definitely a journal-keeper by nature; i have a full box of full journals from over the years. and i'm a big believer in things having meaning & a purpose, though i don't believe we always know what that purpose is in the here and now. but my current reality is that i physically can't keep up with my medical routines and still have the physical stamina to journal. my ability to type/write is largely limited to the forum & to trying to keep my website a bit up to date.

i would pay a million dollars to have the physical ability to journal regularly at the moment. but other than trying to keep in periodic touch with a few friends everything else is going toward survival...literally. so i really can't journal much these days. i truly don't have ANY time that isn't consumed by machines beeping, tubes leaking, caregivers coming in and out, etc.

truthfully a lot of my reason for staying involved with DINET even when it takes all i have physically is b/c it's one of the few places i feel that i can give at least a bit - however limited - these days.

:blink: melissa

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