BS: So that's why I feel like crap!

Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam
Date: 23 Jan 13 - 07:15 AM

Forgot to mention that RA consultant is going to refer me to surgeon to get tendon released in right wrist. Hope it can be done quite quickly and doesn't keep getting cancelled. Heard stories of people waiting for years for simple procedures that could make a huge difference in their lives.

Subject: RE: BS: So that's why I feel like crap!
From: GUEST,CS
Date: 23 Jan 13 - 05:21 AM

Poor Hil, it sucks that she's got so little support from those in positions of power over her body.

"Reading the prednisolone side effects. Damned scary."

Yeah, they always are! I'm on a small cocktail of five different drugs at present, I make a point of not reading the reams of side effects for each one - there are just too many to choose from! o.O

Ginger ale it is, pinch me if I'm tempted to stray - hard!

Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam
Date: 23 Jan 13 - 05:00 AM

Hil is experiencing lots of physical arthritic like pain especially in hips. The way she describes it is totally new and most unpleasant phenomenon. She is losing weight quite quickly, due to lack of appetite. Hoping she adjusts to the meds soon and soon feels some pain relief. She has decided to come off all pain killers stronger than ibuprofen. Admirable.

Hope it's true that I will be feeling much better. Reading the prednisolone side effects. Damned scary. Start tomorrow morning with breakfast and move the hydroxychloroquine to evening meal.

I'm not drinking either with all these drugs. So we will have to be lemonade / ginger ale buddies.

Subject: RE: BS: So that's why I feel like crap!
From: GUEST,CS
Date: 23 Jan 13 - 03:51 AM

If that's what you got T, it's probably not surprising it wasn't diagnosed sooner, typical age of onset is 70! Still, I had a look at what they had to say on an arthritis site, and the prognosis looks pretty good actually, they say this kind of arthritis responds well to treatment with "low dose costicosteroids" which will last for about a year (up to two or three years for a few) after which treatment is concluded and the body should be back to normal, including being able to exercise etc. Fingers crossed the treatment gets it under control then!

BTW - hows Hilary doing? Any progress with her applications?

See you Sunday for Sea Lioning etc. Which reminds me *must sort out words to songs* I've also got to be extra strict, as we both cut out booze for the new year.... x

Subject: RE: BS: So that's why I feel like crap!
From: Sandra in Sydney
Date: 23 Jan 13 - 03:26 AM

best wishes with your new diagnosis & medication

sandra

Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass
Date: 22 Jan 13 - 05:36 PM

Another reason for me to wave the magic wand I don't have! I wish I could help. I hope the new meds help since I can't.

Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam
Date: 22 Jan 13 - 01:09 PM

New diagnosis. After being treated for rheumatoid arthritis since 2005 which never presented with typical symptoms, it has been determined I must have polymyagia rheumatica. So now on steroids until forever I guess. Also calcium/vitamin D supplement to protect my bones from the prednisolone.

I hate this body. Can I have a replacement please? At my age I am not fussed about what it looks like (except having hair in the correct places for a lady) just that it is mostly pain free and capable of long walks and hill climbing.

Subject: RE: BS: So that's why I feel like crap!
From: Sandra in Sydney
Date: 25 Nov 12 - 04:22 AM

sending hugs & hopes the weather improves

sandra

Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass
Date: 24 Nov 12 - 11:37 AM

Oh, dear. I'm so sorry.

Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam
Date: 24 Nov 12 - 08:48 AM

I really hate rain and it does not like me. Someone cut my legs off please.

Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass
Date: 05 Nov 12 - 05:50 PM

VTam, I wish you continuing progress.

Subject: RE: BS: So that's why I feel like crap!
From: saulgoldie
Date: 05 Nov 12 - 07:21 AM

Best wishes, Virginia.

Saul

Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Guest from Sanity
Date: 04 Nov 12 - 11:18 PM

Because you were wiped out??

GfS

Subject: RE: BS: So that's why I feel like crap!
From: Rumncoke
Date: 04 Nov 12 - 11:50 AM

I get told that the Atkins diet is bad for me, so I do the carb diet instead, feel dreadful, ache and sleep until I get fed up of near death experiences, start back on the salads, veges, fish eggs meat, feel great and go out to jump on the trampoline or ride my bike after two or three days depending on the weather. The best thing is that my fingers stop feeling like a bunch of bananas and become deft and supple again - it creeps up slowly when I eat complex carbs.

I think that Vitamin D is a fat soluble one, it is very important as we age. A portion of liver once a week is no bad thing, I would say.   

I don't use salt - when I do get cramp, which is not often, I find that I can get rid of it in a few minutes by drinking a pint or two of water.

Maybe I just work the wrong way round, but I suspect that it is the medics' understanding which is faulty.

Subject: RE: BS: So that's why I feel like crap!
From: maeve
Date: 04 Nov 12 - 06:36 AM

Oh, that's lovely news, Tamara! Thank you for letting us in on the music-making.

Subject: RE: BS: So that's why I feel like crap!
From: Sandra in Sydney
Date: 04 Nov 12 - 06:35 AM

well done, every day a bit more food & few more notes ...

The EPP programme sounds excellent, best wishes & a gentle hug

sandra

Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam
Date: 04 Nov 12 - 05:36 AM

Thanks so much to each of you. Pretty damn miserable day out today, yet I feel enough better physically that I don't mind it.

Managed a little food last night. A toddler portion of steamed carrots and angel hair pasta tossed with Vitallife spread and Zesty Blend herb mix from Kroger. I really love Zesty Blend. Makes food taste wonderful without chemicals or salt.

This morning one slice oat toast and one scrambled free range egg. I even drank a little bit of coffee. Naughty, I know, but it was so good.

Instruments have been put away for nearly a year. Couldn't stand seeing them when it was too painful to play them. In the last few months I have also packed away my voice, pretty much. One song is about all I can manage due to the Sjogrens. Singing was my last bastion of creative expression so I got very low.

I was referred for some counselling in August to help me with pain and depression which ultimately led me to Expert Patient Programme. EPP is a group therapy course that lasts 6 weeks with 2 leaders who are people also dealing with the effects of long term illness. They have been trained to help others cope with pain, illness and the depression associated with illness.

My EPP action plan for the week was to get the little guitar out and try to play and sing some. I managed to play through one and half songs, singing along before my wrist said "NO MORE!" But even better, I pulled out shruti box and learned Let No Man Steal Your Time. WooHooT! I sang through 3 songs Wednesday and repeated this on Thursday.

Friday and Saturday too ill with the stomach thing to do anything but be a miserable sod.

Today the music making resumes. :)

Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass
Date: 03 Nov 12 - 09:28 PM

And me!

Subject: RE: BS: So that's why I feel like crap!
From: gnu
Date: 03 Nov 12 - 07:11 PM

Me too.

Subject: RE: BS: So that's why I feel like crap!
From: maeve
Date: 03 Nov 12 - 03:46 PM

Rooting for you from Maine, Tamara.

Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam
Date: 03 Nov 12 - 02:35 PM

4 rice cakes some Healthy Choice low fat humus and glass of ginger ale and I DON'T feel like I have been punched in the stomach. Most I've eaten in one sitting for 4+ days. Maybe i have turned a corner on the pain killer withdrawal thing.

Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam
Date: 01 Nov 12 - 02:52 PM

Stopped the pain meds because I wanted my brain back (feeble as it is). At least when the zombie apocalypse starts I will have some useful function as diversionary bait.

Subject: RE: BS: So that's why I feel like crap!
From: YorkshireYankee
Date: 01 Nov 12 - 01:52 AM

Oops, just realised I should have logged in yesterday, as I'm not currently posting from my home computer (am in the US, visiting family); in other words, "Guest, 30 Oct 12 - 06:25 PM" was me.

"Going on 3 weeks without the heavy pain meds. Determined to be free of them."

Wow, that's a helluva project/accomplishment! You have my deep respect and admiration, as well as my wishes that it will start to get easier very, very soon.

Fingers crossed for you...

Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass
Date: 31 Oct 12 - 06:56 PM

More well-wishes!

Subject: RE: BS: So that's why I feel like crap!
From: GUEST,VaTam on her Tab
Date: 31 Oct 12 - 03:23 AM

I am hoping why I feel so horrible is that I am in withdrawal from the patches and lyrica. I can take the pain which at times is pretty bad. I can deal with the creepy cannot stand being inside my legs feeling, by taking half a co-codamol at night and going short walks during day. But the feeling like I am constantly swimming through mud is exhausting. Going on 3 weeks without the heavy pain meds. Determined to be free of them.

Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass
Date: 30 Oct 12 - 09:06 PM

Hugs from me, too.

Subject: RE: BS: So that's why I feel like crap!
From: GUEST
Date: 30 Oct 12 - 06:25 PM

Have been wondering how you - and your daughter - are doing these days... and hoping things have maybe improved a little bit? Sounds like prolly not, though. So sorry!

Subject: RE: BS: So that's why I feel like crap!
From: Sandra in Sydney
Date: 30 Oct 12 - 05:51 PM

sending a big hug & lots of love

sandra

Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam
Date: 30 Oct 12 - 02:37 PM

bleagh

Been too messed up to wrap my brain around Mudcat much. Hope peeps are all ok. Sorry if I am missing things. I am not fit for human interaction.

Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Gust from Sanity
Date: 10 Jul 12 - 09:54 PM

gnu: "Your posts speak volumes, GfnS. Well, the ones I actually read. Crawl back under your bridge."

We read the last few in the, 'delusional american politics' thread, and consider maybe pulling your head out...from under your 'bridge'!

GfS

Subject: RE: BS: So that's why I feel like crap!
From: gnu
Date: 10 Jul 12 - 03:55 PM

Your posts speak volumes, GfnS. Well, the ones I actually read. Crawl back under your bridge.

Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Guest from Sanity
Date: 10 Jul 12 - 03:50 PM

Well Ebbie might have a point as well...laughing at humor and satire can make your bladder a little bit more 'active' in an 'uncontrollable way'.

Ever head the expression, " I laughed so hard, I almost peed my pants!"
or, " I laughed so hard...it was the shits!"

GfS

Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Guest from Sanity
Date: 10 Jul 12 - 03:22 PM

Ahhh..The truth hurts!!....lol!

gfS

Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam
Date: 10 Jul 12 - 03:17 PM

Funnily enough all the pain meds are causing an unpleasant side effect, urgent bladder. So GfS is very near the mark. :)

Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Guest from Sanity
Date: 10 Jul 12 - 03:11 PM

You see humor as crude?

GfS

Subject: RE: BS: So that's why I feel like crap!
From: Ebbie
Date: 10 Jul 12 - 03:07 PM

That's another way where we differ: You see it as humor. I see it as crude.

Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Guest from Sanity
Date: 10 Jul 12 - 12:16 PM

Ebbie: "Your sense of humor lacks something, GfS"

The weak accuse others of their own weaknesses....'But You Can Leave Your Hat On'!

GfS

Subject: RE: BS: So that's why I feel like crap!
From: Ebbie
Date: 10 Jul 12 - 12:09 PM

Your sense of humor lacks something, GfS.

Subject: RE: BS: So that's why I feel like crap!
From: GUEST,Guest from Sanity
Date: 09 Jul 12 - 07:38 PM

"So that's why I feel like crap!"


.....not only that...you're standing in a puddle of piss.

GfS

Subject: RE: BS: So that's why I feel like crap!
From: ChanteyLass
Date: 09 Jul 12 - 06:31 PM

Thank you for the update here. In a few minutes I will check the other thread.

Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam
Date: 09 Jul 12 - 04:45 PM

3 steroid injections, 3 durogesic pain patches, lyrica 2x daily and still no relief.
One thing I can say about the pain patch is maybe it is not dealing with the pain but it's put me into the "Do I really care?" frame of mind about it.

Signed off work for another week.

Going to update the Hilary thread now.

Subject: RE: BS: So that's why I feel like crap!
From: maeve
Date: 02 Jul 12 - 07:51 PM

Thanks, Tamara.

Subject: RE: BS: So that's why I feel like crap!
From: Gurney
Date: 02 Jul 12 - 07:03 PM

Strictly from memory: Was not Vitamin D routinely added to margarine in the UK since WWII to prevent rickets?
I seem to remember that immigrants from India were getting rickets due to using ghee rather than margarine, as their pigmentation did not allow their skin to manufacture enough D.

My information may be nearly 40 years out of date, but may be worth checking.

Subject: RE: BS: So that's why I feel like crap!
From: gnu
Date: 02 Jul 12 - 03:17 PM

Good thoughts... good luck.

Subject: RE: BS: So that's why I feel like crap!
From: VirginiaTam
Date: 02 Jul 12 - 02:31 PM

You guys are lovely.

I've had a n email prompt that peeps were asking about me.

Sorry I have not been much online. A little facebooking early and late in day and then drug drowsing in between. On synthetic opiate based pain patch medium dose fentanyl and 2 different doses of pregabalin am and pm.

I am afraid I've been really out of it. missed two weeks of work. Returned today and was promptly sent back home as I am "not fit."

Hil and Galen have moved in with his parents in the midst of the terrible storms this past weekend. SHe had to give up her job and cannot cobra her insurance as she has moved to another state. I think this effects her ability to apply for food stamps and unemployment too.   

All her bloods and sugar are much better but she is still in a lot of pain and spleen is still very large.   She is scheduled to have a scan of hyper portal vein to see if there is a blockage. I don't know what after that.

I will be going home to US next week (provided I am well enough). Will see her then.

thank you all for your continued good thoughts.

Subject: RE: BS: So that's why I feel like crap!
From: maeve
Date: 01 Jul 12 - 11:10 PM

I also emailed her several days ago, kat. Don't wish to nag Tam but do wish to keep in touch if we can be helpful.

Subject: RE: BS: So that's why I feel like crap!
From: katlaughing
Date: 01 Jul 12 - 09:28 PM

I've just sent her an email. Hope we hear something.

Subject: RE: BS: So that's why I feel like crap!
From: gnu
Date: 01 Jul 12 - 01:53 PM

Yeah... ?

Subject: RE: BS: So that's why I feel like crap!
From: Ebbie
Date: 30 Jun 12 - 06:13 PM

And again...

Subject: RE: BS: So that's why I feel like crap!
From: maeve
Date: 29 Jun 12 - 08:18 PM

Once more for this week...refresh.