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ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/7/2010 3:38 PM (GMT -7)   
The home help comes this afternoon, so this morning try to:

* keep on dusting
* get stuff off floor
* tidy shower area
* do a small load of washing
* wash cleaning rags?
* some / all dishes
* shower and dress
* keep dealing with ants rolleyes
* cook chicken and actually eat a proper meal, for a change.

Afternoon:

* J's paperwork?
* letter?
* keep thinking about decluttering?
* look at gadgets?

All of this will have to be done in sort bursts, as I have pain again today.

I don't see much real tlc in that, so I'll have a think and maybe add more later. I suppose, though, there's a fair bit of tlc in just having a tidier and cleaner house, isn't there?


I hope your pain keeps improving, Flowery and Choc.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/7/2010 10:36 PM (GMT -7)   
3.30 pm

* keep on dusting - yes
* get stuff off floor - yes
* tidy shower area - yes
* do a small load of washing - yes
* some / all dishes - yes
* shower and dress - yes
* keep thinking about decluttering? - oh my, yes. Have done lots.
* look at gadgets? - yes.

Have also had a tradesman come round, someone I have been chasing for YEARS, and suddenly a long-term stressor has been dealt with. Hurrah.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/8/2010 2:04 AM (GMT -7)   
7 pm

* cook chicken and actually eat a proper meal, for a change. - yes
* J's paperwork? - YES!! Go me!!!!! That's a big and fiddly job, finally out of the way :-).

Ivy, TOTALLY proud of herself :-)
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

chocholic
Veteran Member


Date Joined Apr 2006
Total Posts : 634
   Posted 9/8/2010 2:39 AM (GMT -7)   
WHOOP!!! happy dance for Ivy!! well done, thats LOADS done!! well done on catching a tradesman. What bait did you use? ;0)

I feel abit better today. I dont worry about my mortality, its more like i get upset over it. Me and debilitated had a few things in common, he was only 2 years younger than me, and even though my crohn's is in no way as bad as his i am at the end of the road when it comes to drug treatments on the NHS. I'm on Humira and thats the last drug available. We both suffered from S.V.T, mine was solved through surgery but i know it has left my heart weakened. Debilitated's passing shocked me to the core.

I feel pretty safe with the NHS, but i'm always fighting my consultant for the treatment i think is right. Its taken me from the start of this year to convince my GI that i needed surgery.

I dont believe i WILL die from this, but my eyes have suddenly opened to the fact i am not invincible. I've taken care of my health as needed.

Wednesday TLC

* empty dryer
* put socks in dryer
* dishes
* s*** as mum heads off to the dentist again
Dx - Crohn's (2006), Depression (2010)
Currently - Humira fornightly, iron infusion weekly, B12 3 monthly, prenatal vits+minerals, 15mg prednisolone, calcium supplement, mirtazapine
Tried - aza, pentasa, questran, infliximab
Episcleritis for 3 weeks x 2, pains in hands, wrists, hips, lower back, knees and ankles

Allergic to Infliximab
BOOKED FOR open SUGERY ON 9TH NOVEMBER

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/8/2010 3:03 AM (GMT -7)   
Choc, when my Mum died I needed to start making some proper decisions about my future, seeing as I was now alone in the world. It was suggested that I discuss mortality with my doctors, so I did, and they said that they reckoned I'd probably lost about five years off my life, compared to a normal person, as long as I didn't suffer the rare complications (which I'm sure you know about) like rupturing, arresting on the operating table; things like that.

Maybe it might help you to simply ask your doctors, point blank, what your prognosis is? I know I was surprised: I was expecting to be dead by my forties as, like you, I'd been trying all the meds and failing them, and just developing more and more complications...

That's frustrating that you need to keep fighting for proper treatment. Is it because the NHS is strapped for cash and is trying to avoid hospitalisations?

OK, it's 8pm. I've made my bed, done most of the dishes, fed the cats, and have scribbled a letter to my gastro man, at my gynae's recommendation, because she is concerned about the symptoms I've been having over the last few weeks (as am I) and said I needed to start alerting the docs in charge. So, I have.

How are you going, Vixen and NCOT?

btw, Choc, what was deleted about your Mum going to the dentist? I didn't follow that part.

Ivy, all dusty after decluttering and debating whether to shower or not.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

chocholic
Veteran Member


Date Joined Apr 2006
Total Posts : 634
   Posted 9/8/2010 5:36 AM (GMT -7)   
oh i wrote a word that included a racist word but obviously wasnt racist! i will chuckle at my mom going to the dentist!
My GI is very resistant to surgery and me possibly being worse than he wants or expects me to be. It was like i was lying except my blood results showed inflammation, CRP - 57, feacal calp - 964. He spent a year telling me that i had no iron stores and to take iron (which i was doing) and let my iron get to 8 or something stupid. I'm on top of my health which is a good thing, cos otherwise i'd still be plodding along suffering with no end in sight.

I like my GI he is a lovely man, but i had him trained at one point and now it seems to have slipped. I think i need to retrain him again. He wants me to go off and live my life to the full, which is what i want too.

I tink i should ask him outright, but to be honest i wouldnt be surprised if he doged the question and told me i would live a totally normal and long life.
Dx - Crohn's (2006), Depression (2010)
Currently - Humira fornightly, iron infusion weekly, B12 3 monthly, prenatal vits+minerals, 15mg prednisolone, calcium supplement, mirtazapine
Tried - aza, pentasa, questran, infliximab
Episcleritis for 3 weeks x 2, pains in hands, wrists, hips, lower back, knees and ankles

Allergic to Infliximab
BOOKED FOR open SUGERY ON 9TH NOVEMBER

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8550
   Posted 9/8/2010 5:51 AM (GMT -7)   
Congrats, Ivy! :p

@Choc - sound advice from Ivy as always. I was taken aback to hear you had the same heart condition as debiliated, though. No wonder his passing shocked you... :/

@Ivy - Pretty much hit the nail on the head with the fighting for proper treatment comment. I respect choc for doing what she did, because she fought her corner and for that she has guts (though a little bit less after the surgery <_<).

If treatment of lifelong illnesses such as IBD are bad enough on the NHS, then mental health is even worse. I have had quite a lot of experience on this front and am unfortunately due to have a bit more tomorrow: I have an assessment with a psychiatrist. I have every intention of going, but I am neither hopeful nor looking forward to it. I have tried to tell my mum many times that if you're mentally ill you're on your own; doctors cannot make it all ****ing* better. If medication or a brief burst of CBT works for you, great; that's a start. If it doesn't, then there is nothing else the NHS can do for you. I actually don't blame them for this, since no country invests a lot of money, time or TLC into its mentally ill population, so why would the UK be the unique exception? I just wish my mum would stop with the wishful thinking, especially as she has no problems with grasping that nothing can be done for my Crohn's.

Sorry for the impromptu rant... I guess that answers your question of how I'm doing :-/

That does give me my TLC for today, however:

- Plan a route on Google Street View, as the appointment is in a part of town I have never been to before



*swear word usually omitted <_<

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8550
   Posted 9/8/2010 5:56 AM (GMT -7)   
Hmm...

I tink i should ask him outright, but to be honest i wouldnt be surprised if he doged the question and told me i would live a totally normal and long life.

Based on everything you said, that sounds exactly like what he would say. He sounds a bit like my GP. A lovely guy but optimistic to the point of being completely unconcerned.

chocholic
Veteran Member


Date Joined Apr 2006
Total Posts : 634
   Posted 9/8/2010 8:15 AM (GMT -7)   
thats very true NCOT, he is absurdly optimistic. Its not necessarily a bad thing, but really annoys me when i KNOW something isnt working but he wants to 'wait and see' for another three months. I too have an assesment with a health psycologist, i have no idea what may or may not happen from it. I didnt really want to see him, but my GI thought i needed better coping stratigies cos my symptoms were spiralling out of control. Cos we can all just stop diarrhea with our minds and we all just 'want' to be sick.

Ok i need to stop now, cos i can feel the anger building!

btw NCOT thanks for saying you admire me for fighting my corner, i can fight yours too if you like. I'm like a bulldog, i wont let go of something once i think it could be an option, much to my GI's despair!
Dx - Crohn's (2006), Depression (2010)
Currently - Humira fornightly, iron infusion weekly, B12 3 monthly, prenatal vits+minerals, 15mg prednisolone, calcium supplement, mirtazapine
Tried - aza, pentasa, questran, infliximab
Episcleritis for 3 weeks x 2, pains in hands, wrists, hips, lower back, knees and ankles

Allergic to Infliximab
BOOKED FOR open SUGERY ON 9TH NOVEMBER

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 9/8/2010 9:59 AM (GMT -7)   
Got up before noon, now to get some stuff done....hmmm, what to do?

*coffee
*shower
*ice bad hand, perhaps resort to nsaids for today to get swelling down

I guess I should count myself lucky. My insurance has excellent mental health benefits. I could go as many times to a psych dr as I wanted to...though I don't. I just have my PCP prescribe effexor and seroquel, which I'm meaning to change to get on cheaper meds just in case insurance runs out or I don't have prescription coverage as good as what I have now.

Got a letter back saying I wasn't accepted for insurance I applied for. I wasn't surprised, but was surprised at why. They said because of the pulmonary emboli they wouldn't cover me. That's over and done with in my mind. It happened because of birth control pills (and having crohn's) and I no longer take bc and also now take aspirin daily. I expected them to say no because of crohn's, but that wasn't even mentioned. Strange...off to the next company to see if they'll take me...wish me luck!

Will come back and add to my list!
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8550
   Posted 9/8/2010 12:40 PM (GMT -7)   
@choc - That's just doctors all over for you... When all else fails, make out like the problem is all in the patient's mind. That said, I hope the appointment with the psychologist goes well for you. It's possible if you get a good person it could help more than you might think. I won't lie; most psychologists and counsellors I have seen have been total crap. It took seeing a good one last year to make me realise that maybe, just maybe, there was something to this talking lark after all. But I only got to see him the once, so I never found out.

You're welcome :p ... Keep up the good attitude! I've said it before on here, but it doesn't bear repeating too often: passivity gets you nowhere. Doctors are only human, so they won't automatically do what's best; they'll do what's easiest/cheapest. Most patients don't know any better, so they get away with it. And, in a nutshell, it's wrong.

I appreciate the offer to fight my corner <_<. Tbh, I'm in a difficult position. When I was turned down for Remicade, I did think of contesting it. But it's a complicated situation, made more complicated by funding issues. And I'm not up to fighting both my GI and the bureaucratic managers who hold the purse strings. I'm also apparently not suitable for surgery, so the only thing I have left to try is enteral nutrition. And I can't see my GI going wild for that, but unless she comes up with a better suggestion I'm pushing for the enteral nutrition.

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 9/8/2010 2:27 PM (GMT -7)   
Aaah, what a day! I had my coffee, then...got a call from Kaiser about a job. It's only 10 hours a week on Saturday and Sunday, but really good pay, so I'm really interested. I had to do an online assesment and give lots of info, then my info will be forwarded to the hiring supervisor. It sounds promising, but I can't let myself get my hopes up just yet.

Also, I applied for a 911 dispatcher job in the county I live in a while ago, and got past step one in the hiring process. They get thousands of applicants for each job, so it means something that I even made it this far! It's a lengthy process, but the first step is passed, and I'll go to a background orientation on Oct 1. Insurance would be really good working for the county. Again, can't get my hopes up yet as this is the first in many steps in their hiring process.

It seems like everyone wants me today! Maybe one of these will come through and become something, but not counting on either just yet. It is good to have days like this, now if one of them will work out things will be even better.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/8/2010 3:18 PM (GMT -7)   
BECKY!!! That's FABULOUS!!!!! I'm so happy for you! Wow!

I've just woken up and read that - what a way to start the day!

:-) :-) :-)

NCOT and Choc, I want to add more to the conversation, and will try to, when I'm less groggy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8550
   Posted 9/8/2010 4:09 PM (GMT -7)   
Uh... yeah. Congratulations monkiray! :p (It feels a bit strange to use your real name when I don't know you at all.)

I completed today's TLC, which has left me dreading the drive there almost as much as the appointment :-/

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/8/2010 4:15 PM (GMT -7)   

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8550
   Posted 9/8/2010 4:38 PM (GMT -7)   
No, luckily. Just a ring road around the town and loads of normal roundabouts. I should be all right really, as long as I'm not severely sleep deprived. I am gonna get an early night of course, but that doesn't guarantee a good night's sleep. Somewhat typically I've been braindead and knackered all evening, then about an hour ago I start waking up and feeling more lively; the better mood is nice but now is not the time... :-/

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 9/8/2010 6:58 PM (GMT -7)   
NCOT, please call me Becky! I wouldn't have shared my real name if I minded people calling me by it :)

Hope you sleep well and your appointment goes well also!

And thanks for the congrats everyone! Like I said, I'm not counting on them just yet, but especially for the 911 job, it's great to just have gotten this far. I found out tonight they have 5 steps in the process, so we'll see how it all goes. They do the orientation, an oral interview, then a psychiatric evaluation, more paperwork, drug test/physical, then training if you make it past all the other stuff. It would be a really challenging job, which would be really nice. I like a good challenge! As for the other job, I should know more in about a week. I'll let you know what comes of it!
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/9/2010 4:16 AM (GMT -7)   
A quick note before I go to bed.

I COMPLETELY agree with you about the frustration of doctors just wanting to keep waiting to see what happens. I don't think they realise how absolutely distressing it is to be at the end of your rope and be told just to sit it out a bit longer.

I say again, if they (or their daughters or wives) had to do it, I'm sure things'd be different...

'night.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8550
   Posted 9/9/2010 9:49 AM (GMT -7)   
@Becky - Ah okay then :p

My appointment went pretty well (more [much more <_<] about it in the Thursday TLC thread). Good luck with your jobs! The 911 one sounds interesting.
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