L'il Update From The Moon

[Silvermoon]

So last week I attended the appointment with the gastroenterologist that my current specialist had referred me to. This guy is the "guru" of Crohn's (in Alberta anyway) - has been studying the disease for over 50 years, and started the GI Unit in Edmonton over 40 years ago. Although he lets the other GI docs do all the research-y type stuff, he keeps up on the current research and still sees patients on a regular basis.

This guy (Dr S.) did a FULL physical exam on me (the likes of which I have not had since first year nursing when we were learning on each other!!) and at the end of the physical exam, looked at me and said, (and I quote) "Jesus H. C_____; why aren't you dead yet??"

Apparently other "specialists" have missed that my liver has become enlarged, and my kidneys are starting to fail. I have active CD at my stoma. And that is all he could SEE. I know have to go back (they are trying to coordinate appointments as close together as posible) for: CT scan, FULL GI follow-through, appt with stoma nurse, dermatologist/pathologist, and a rheumatologist (sp? - forgive my spelling ATM - too exhausted to even think).

I am so sick and tired of being so sick and tired I am ready to give up. If not for the love and caring and HUGE support of my husband and my general practitioner, I am sure I would have just crawled up into a ball and died months ago already. The house is a mess and it stinks, the laundry is piled up on the floor, and I am at the point where I just don't give a **** anymore.... and the GUILT that is eating away at me for not being able to even do these simple things for my husband I am sure is not making things any better (I am sure I am probably exaggerating how bad the mess is, because my hubby really does pitch in and do what he can, but one cannot expect to work 8 hours a day, come home and do the farm chores, the laundry, the cooking and cleaning, AND try to take care of your stubborn-assed wife).

I am sorry for crying all over this thread - I didn't really mean it to turn out that way, but once I started typing, well... you know how it is.....

Anyway, not sure when all this testing is going to happen, but will try to keep anyone who cares updated and let you know if I am still alive or not.....

Thanks for listening, and I hope you all are taking care of yourselves. PLEASE PLEASE PLEASE - take it form me (cause I have now learned the hard way) do not EVER feel like a hypochondriac or a burden to your doctor(s) - MAKE them listen to you - it could save you from so much pain and suffering later on.....

 

[InkyStinky]

:hug: I'm so sorry. My situation is no where near as bad as yours physically, but I hear you loud and clear on the mental/emotional ends of things. I really hope that all the follow-up test will find something that they can do for you so at least you can see some sort of positive progress - it's the neverending same old problems with nothing to be done about them that really sap me of any ability to really care about just about anything. :hug:

 

[tiloah]

I'm so sorry to hear it. Hopefully since this new specialist realizes how much you need help, he will be able to get it for you. I hope they get your liver and kidneys in line.

Let me know if there is anything I can do for you. *big hugs*

 

[Cat-a-Tonic]

Oh Silver, I'm so sorry to hear this. I wish there were something I could say or do to make your situation less awful. But, I'm here, listening and offering lots of virtual hugs and hoping you don't give up. Please do update us when you are able to, and I'll keep you in my thoughts. Sending lots of hugs to you!

 

[Lydia]

Is it Dr. Sadowski? If it is, I love him. I have the biggest heros crush on that guy. He has brought me back from the brink a few times.

I wish you a speedy recovery.

 

[Astra]

Dear Silver

I feel so humble, so sorry, here I am having a pity party on me own just cos I've got a snotty nose!
It's really hard when your house is a **** tip, the guilt is enormous, I've been there, it's soul destroying. I totally empathise. Try not to fret about that, things have a way of sorting themselves out. But how the washing is gonna do itself, F*** knows! lol
I wish there was something I could say or do to make you feel better, about everything, emotionally and physically, so all I can do is send squishy cyber hugs thro cyber space, and hope you get them!
We love you Oh Silver Moon One
Take care and let us know how you're getting on sometime, when you're able
xxxxxx

 

[DustyKat]

Oh man Silver...((((((((((((HUGSsssssssssssssssssssssssss))))))))))))

What a bloody scary and difficult time for you.

I hope, wish and pray more than anything that they can sort the liver and renal issues out for you and bring your CD back under control. I want so much for you to feel well and energised again mate.
I know that light at the end of the tunnel is hard to see right now and the black dog has settled on your shoulders but just know that we are here and we do care for you so very much.

Loads of love, hugs, kisses and well wishes, :heart:
Dusty. xxxxxxxx

 

[Dexky]

Silver!! I hate that someone so beautiful and caring as you is going through so much pain and suffering. I know you are tired of fighting but please don't give up. It sounds like this crohn's guru is ready to do whatever it takes.

 

[Entchen]

Poor, poor Silver. Treat yourself really nicely, take it an hour at a time (a minute at a time if you need to), and know that we're all pulling for you.

 

[ameslouise]

Aw, Silver! WTF?!?! I so wish you could get a break already!!!

Hang in there. In addition to your wonderful husband and doctor, you have love and support from all of us!!

Sending lots of hugs. xo -Amy

 

[Silvermoon]

Thank you so much for all your wishes and words, it means so much :redface: :'( .

The doc's name is Dr Richard Sherbaniuk - old and gruff but VERY thorough, so between him and my local GP (who is actually only a locum - in 6 weeks then gone for 6 weeks, but at least SOME consistancy) they keep pushing and are not ready to give up yet - so as long as I can keep up with them, maybe something will break for the good sometime soon.

I hope the rest of you keep your face to the sun and keep smiling - I am trying to....

Love and squishy hugs from The Moon.

 

[Terriernut]

Silver!!! You beautiful brave lady! Going through so much.

Dont you for ONE FRAPPING MOMENT feel guilty about not being able to do things around the house, or farm. You need to focus on getting well. 100% well. And YOU WILL get there.

Dont give up, dont feel guilty, one day at a time, one moment at a time. Focus on you getting better. Get the tests, get the treatment you need. You will succeed, there is no doubt in my mind!

:heart::heart::heart::heart::heart::heart::heart::heart::heart::heart:

 

[carolhew]

Silver, it sounds like you have a great GI! I am sorry to hear what you are going through, but I agree with the others about the feeling guilty. You are in my thoughts and I am sending positive vibes your way!

Carol

 

[DustyKat]

Everything crossed for you mate that the gruff old bugger does indeed come up with the goods!...:goodluck:

Thinking of ya mate. :heart:
Dusty. xxxxxxxx

 

[littlemissh]

It sounds like you have got so much on, I hope that the testing means that you can get some better treatment to make you feel better.
Will be thinking of you and sending virtual hugs your way.

 

[LOSTnut]

Thinking of you and wishing you that you are now on the right track to getting better soon.

Lotsa hugs and much love from me to you!

 

[bushydougie]

So sorry to hear about everything that you are going through. I know what it's like BUT cleaning the house is the least of your worries so please, please concentrate on your health and getting yourself on the mend.
Thinking of you. Take care
Sam
x

 

[Jer's Girl]

So sorry to hear that you are doing so poorly, but thank goodness for that Dr! We will be thinking of you and wishing you well. At least we all have each other when things go to **** right? Take care of yourself.

 

[xJillx]

I am so sorry for everything you are going through. Don't worry about the house work, laundry, whatever. You need to focus on getting well. That is the one and most important thing you can do for yourself and loved ones. And it sure sounds like you have an amazing team of doctors behind you, so I hope things turn around real soon!

Thinking of you, Silver.

 

[mizgarnet]

Sending you hugs and healing thoughts.

Wendy

 

[Terriernut]

Silver, I know you are feeling poorly (understatement!!) But I was wondering if there has been any improvement? Have the Dr's been able to help at all??

Worried!
Misty

 

[Silvermoon]

To tell truth, I am getting more and more frustrated... not with the doc but with his "admin" person... who is supposed to be setting up all these tests, and yet has done pretty much NOTHING yet... and in the mean time, I have two new "sores" on my ass and my appetite is decreasing day by day.

I feel bad for whining cause a lot of you play this "waiting game" every day of your lives... I am so spoiled in that I have never had to do that. I have so very lucky in my life that all I have had to do is pick up the phone and get results... it's not happening for me anymore and I am getting thouroughly pissed and depressed. I KNOW how to get action and get results, and I can't do it...it makes me so mad that a person with my connections cannot get any action...what hell must the rest of you be going through when you get stonewalled at every turn??? :'(

I am determined in my next life I am coming back as a force that can change this situation for all of us... "Bitchy Queen Silver" has a nice and powerful ring to it, doncha think? LOL!

Anyway, sorry for the mini-vent...hope the rest of you are keeping as well as can be expected....

Squishy hugs from The Bitchy Moon......

 

[Terriernut]

IBD nurse hotline time Silver! Tell her like it is. She'll get you in!!!!

Honey, you are a force of good, and you are going to get better treatment! IN THIS LIFETIME!!! Like now...!!!!!!!!!!!!

If you give me the details and number...I'll ring em from over here. Did I mention I'm a rottweiler?

 

[DustyKat]

G'day Bitchy Queen Silver...:bigwave:

Oh man, that sucks mate...

Dammit hun, I hope you can get something sorted soon. Any chance you can speak directly with the doc?

Thinking of you, :heart:
Dusty. xxxxxxxx

 

[LOSTnut]

:yfrown:
Bitch = Babe In Total Control of Herself, ergo it is a good thing, ergo you get things done, ergo....(fill in the blank)

Don't forget to tell the doctor on you next visit.

Good to hear from you :thumleft:

 

[MADiMarc]

Silver,
So sorry. Wish I could send a cleaning team your way!
Big hugs!
Michele

 

[glum chump]

"Sometimes, being a bitch is all a woman's got to hang on to" (Kathy Bates character in Dolores Clairborne).

Hope you're hanging in there---waiting is frustrating, especially when scary things are happening all over your body.

Sending you lots of squishy Moon hugs,

Kismet

 

[kyi]

i hear you loud and clear i feel so lazy all day everyday, i cant barely look after myself let alone my son and the house im just in pain all the time. im one of those people that dont speak to my dr about things cause i feel a burdan to them, but i have learnt alot from this forum and that telling your dr everything is important. but u rant away it whats makes us female =).I hope everything is ok and you get the help u need, lots of hugs your way xx

 

[carolhew]

Silver, I feel your frustration, my GP has a new front office person and she has not returned my calls all week. I was told to call! So I am just going to show up in their office on Friday, my day off!