Jane's Rainbow: for all needing support & comfort

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: GUEST,pete from seven stars link
Date: 20 Jun 13 - 12:50 PM

keep it UP SPAW.
Hoping you both have a wonderful and worry free break in that lovely part of england,wendy.   blessings pete.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 20 Jun 13 - 10:29 AM

Ditto Spaw. Just relax.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: catspaw49
Date: 20 Jun 13 - 08:42 AM

Thanks Wendy.....and have a great time. The two of you deserve it. We'll look forward to hearing all about it when you come back!


Spaw

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: billybob
Date: 20 Jun 13 - 08:25 AM

Going ashore for a few days, Billy and I are going to Porlock in Somerset to chill for a while. I have a full time carer staying with mother so hopefully all will be well at home? After a rather difficult two years I am looking forward to it just being the two of us!

Love to all the crew. UP Spaw!!

Will catch up when you dock in port!!

with love
Wendy xxxxxxxxx

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Pete Jennings
Date: 19 Jun 13 - 12:38 PM

Thanks Ranger1. Medicine eh? He'll be mainlining whisky, I reckon.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Sandra in Sydney
Date: 19 Jun 13 - 04:30 AM

excellent news from spaw.

sandra

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ChanteyLass
Date: 18 Jun 13 - 08:21 PM

Any port in a storm for those sailing on the Rainbow. Getting the port is good news, and it's about time!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Nigel Paterson
Date: 18 Jun 13 - 05:02 PM

On board The Rainbow, Port or Starboard, take your choice!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 18 Jun 13 - 02:30 PM

Pete... HAHAHAHAHAHAHAA!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ranger1
Date: 18 Jun 13 - 02:05 PM

Pete, a port is a piece of medical equipment that is surgically implanted so that medicine can be given intravenously without inserting a needle every time a patient needs the medication.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Pete Jennings
Date: 18 Jun 13 - 12:57 PM

Good news, Spaw, and you get port prescribed by a doctor?? I'm on my way!

Pete

PS. Joking apart, what is a port?

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Nigel Paterson
Date: 18 Jun 13 - 04:17 AM

Spaw, I cannot find the words that adequately express how I feel about the amazing, positive response to your treatment &, as it turns out, against the odds too! Such good news. My eyes are filled with tears of joy.
                                        HUC TENDIMUS OMNES! My Dear Friend (I'm beginning to think that two 'Ts' may be better than one!)
                                                 With Love & Much Happiness,
                                                                                              Nigel.
                                                                                              xxxx

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 17 Jun 13 - 05:42 PM

Spaw... like I said on FB, short version... UP yours and happy to hear the good update.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Janie
Date: 17 Jun 13 - 05:09 PM

We always knew you were extraordinary, Spaw. Very good news, both the response to the treatment and to the port. Hurray!!!! Hope you don't have to keep falling down and knocking yourself silly, not to mention black and blue, to keep getting such good results.

VT, you are always in my thoughts and meditations. I can't know, but do have some idea of what you deal with each and every day.

Maeve, may you and your family have moments of respite and joy.

Still rowing and singing with the crew, for all.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: frogprince
Date: 17 Jun 13 - 03:56 PM

"----Only about 20% respond to this treatment."

Well, Spaw, you have to realize that most of the percentages are based on normal people...

(Okay, so I'll admit that I'm very happy to hear your news)

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Ebbie
Date: 17 Jun 13 - 11:52 AM

:) :) :)

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: catspaw49
Date: 17 Jun 13 - 11:48 AM

I have passed my best to Joe on FB but it never hurts to let people know you care.......and we do.


Update on me: Healing okay after dumbass fall. Rib still hurts and light bruising still but overall about healed up. GREAT NEWS on the blood work.   My red count is climbing closer to normal, my hemoglobin entered the low normal range as did my platelet count which is 147! Other numbers coming in line and the Doc was all smiles.   We discussed my dislike of shots and she signed for a port. She never suggested it before as she was afraid my health would cause problems. So I get the port this week and next week I do the Vidaza through it. I got this week postponed. NO MORE SHOTS!!!

Doctor Sundaram also said we would back off the weekly blood tests and Aronesp to every 2 weeks and hopefully then to once a month. She was very pleased at progress and that I responded to this and then dropped this bomb she didn't mention before----Only about 20% respond to this treatment.

Thanks for all the good thoughts!

And for my mates aboard this compassionate cruise, I want to say thanks even more and tell you how lucky I am to be a part of this crew. UP YOURS!!!!!! LOL....Many thanks


Spaw

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: GUEST,pete from seven stars link
Date: 17 Jun 13 - 11:40 AM

mum in law was blessed also in having a dedicated daughter and son in law before departing this lfe.blessings joe.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Nigel Paterson
Date: 17 Jun 13 - 10:37 AM

Ann & I send sincere condolences & kindly, loving thoughts to Joe, Christina, their Family & Friends.
            These words of Joe's ring out loud & clear; so full of meaning & memories:

            "She was 98 years old, and she lived a full and wonderful life".

                                             With Love,
                                                            Nigel & Ann.
                                                            xxxxxxxxxx

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 17 Jun 13 - 09:52 AM

Dunno if anyone mentioned Skipy...

Thread.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: billybob
Date: 16 Jun 13 - 06:42 AM

Sending love to Joe and his wife,
RIP Valeria

Wendy and Billy xxxxxxx

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: GUEST,Frug
Date: 15 Jun 13 - 05:23 PM

With deepest condolences. My love and best wishes to you all.

Frank xx

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: VirginiaTam
Date: 15 Jun 13 - 02:02 PM

All out hugs to Joe and his wife. Happy they had blessed time with lovely mother and mother in law. Care those memories long.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 14 Jun 13 - 03:58 PM

Of course, m.

Spaw... UP yours UP yours UP yours!

VT... you've found one crumb of the crux of the biscuit? Good!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: maeve
Date: 14 Jun 13 - 03:49 PM

You are all on my mind and in my heart as I deal with my own family needs. Please add Joe Offer and his wife Christina to your thoughts/prayers:
*************
Subject: RE: BS: Eldercare
From: Joe Offer - PM
Date: 13 Jun 13 - 04:55 PM

"My lovely mother-in-law, Valeria Slowick, died today, sometime after midnight. She was 98 years old, and she lived a full and wonderful life. The last two years were difficult for her and for us, but I'm glad we were able to keep her at home. We had some wonderful caregivers to help us with her over the last year..."

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: VirginiaTam
Date: 14 Jun 13 - 01:51 PM

Oh Spaw, I am sure I am not facing anything like what you are going through.

But thank you and all others too. Found a trick (I hope) to knock the edge off sugar drop in the morning. When I wake up at stupid o'clock (3-4) in the morning I will eat a couple of Carrs water table biscuits. It kills the nausea and I don't get the shakes so bad when 7am and breakfast time rolls around.

So far it has worked pretty well.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: catspaw49
Date: 14 Jun 13 - 12:00 PM

Funny thing Nigel.....I think we all need to focus on VTam because when I read all she's going through right now and the complexity of the med situation and how all this affects her physiacally and mentally, all I can think is, "Damn! I'm glad that ain't me!!"

Tam we are all thinking about you and sending the best. I've only got a about a 50 watt transmitter but I have it cranked up full your way. Thoughts for the others too, but I hope you get all this worked out and that it actually works well when you do! Hang in!

Another round of Vidaza starts for me on Monday so I'll be around pissin' and moanin' about the damn shots for a couple of weeks.......LOL.....Just ignore me and send an UP or two to keep the stuff and the Aronesp working! Will also see the Doc on Monday and see what she says.


Spaw

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Nigel Paterson
Date: 14 Jun 13 - 11:44 AM

A lovely, sunny, good afternoon from East London. Special thoughts for Spaw & VTam. Both beset with complex conditions. Please know, both of you, that your welfare is of concern to all who voyage on 'Jane's Rainbow'.
                                                 The best of weekends to All,
                                                                                           With Love,
                                                                                                          Nigel.
                                                                                                          xxxx

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: GUEST,pete from seven stars link
Date: 14 Jun 13 - 11:06 AM

likewise,blessings   pete.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Sandra in Sydney
Date: 14 Jun 13 - 07:22 AM

checking in & sending hugs to Tam & spaw

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Janie
Date: 13 Jun 13 - 11:18 PM

Not around much and not checking in as often as I would like, but still here, regardless, and including all of you daily in my thoughts and meditations.

I continue to be so grateful for this place share and care.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 12 Jun 13 - 09:54 PM

Yeah, VTam.. I hear ya. Pain is really a minor problem compared to the rest... the uncertainty and trepidation... the "unease" of the mind... that is the worst part of it all. I wish you well with dealing with it and getting things sorted out.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: VirginiaTam
Date: 12 Jun 13 - 04:05 PM

special up for Kendall who knocked his head, took a tumble and bruised his dignity as well as his hip.

optometrist referred me to opthamalogist due to slightly high mercer reading. My dad had glaucoma, I've been on an eye altering med so she just wants to be sure nothing is missed.

BUT - my prescription has not changed. YIPPEE!

Visit with GP:
BP is high but probably due to prednisolone. Given all drugs I am on, wants me tu come in once a week for BP check and see if it settels as steroid is withdrawn and anti-TNF commences.
Possible angina pain to be looked at with cardio risk assessment as BP is monitored.
What I thought might be diabetes (tremours, weakness, dizziness in the morning surrounding making and eating breakfast) he thinks is low blood sugar and not diabetes. Simply because it only happens in morning. Also probably due to steroid.

But I am getting fasting insulin and chloesterol bloods done 3 July.

So I will contact RA nurse, ask about chest xray and TB blood test and tell her I am ready to start Golmumab. I need to get inflammation down because it is making be feel really bad.

High and constant pain I can pretty much handle.
General unwellness, nausea, brain fog, and malaise on top of pain, I cannot.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Pete Jennings
Date: 12 Jun 13 - 12:52 PM

Good thoughts for VT and 10.5 for Spaw is much improved...but Froggie's right about the feet!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: GUEST,pete from seven stars link
Date: 12 Jun 13 - 11:09 AM

sure does sound rough for you V Tam.hoping it improves for you.pete.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: frogprince
Date: 11 Jun 13 - 10:01 PM

Virginia Tam, I'm sure you will be getting a major outpouring of best thoughts; it hurts just to hear what you're going through.

Spaw, good to hear the clinical stuff is on the "UP" side, but sorry you're too stupid to pick up your friggin' feet...

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: VirginiaTam
Date: 11 Jun 13 - 04:57 PM

God yeah. Read about Spaw's tumble on FB and was horrified by it. All that raw skin, purple bruises and stuff. I mean GROSS. Who wants to read that shit at stupid o'clock in the morning?

:)

Love ya too man. Glad all that other even badder stuff is settling down. Take better care of yourself.

Thanks all for good wishes.

Still feeling awful rough. Waking in morning feeling like I've been hit by a bus. Everything hurts. But it is to be expected. Take away one of the immuno suppressanst and I guess the inflammation rises. Optometrist and GP appointments tomorrow. We shall see whats up.

Huggles you all.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: GUEST,pete from seven stars link
Date: 11 Jun 13 - 03:18 PM

UP SPAW - rather than falling down!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: KT
Date: 10 Jun 13 - 11:03 PM

It's a shame about the fall, Spaw, but good news on other fronts! So good to hear! Warm greetings to the rest of you, too, from another who checks in way more than I write ~ Kind regards to all ~ KT

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Sandra in Sydney
Date: 10 Jun 13 - 09:41 PM

I've also been away - we had Public Holiday long weekend so naturally I was at a Festival & had a great time.

I'm just catching up on my favourite thread.

Sending lots of love & hugs to spaw & everyone.

sandra

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ChanteyLass
Date: 10 Jun 13 - 09:15 PM

I've been away for four days, but all of you, individually or generally, have been in my thoughts. R1, Virginia Tam, and Spaw, I hope you all continue improve.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: GUEST,Frug
Date: 10 Jun 13 - 03:28 PM

Go the Spawster ! Go man Go! You have so much good will blowing your sails its a natch!

Frank

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 10 Jun 13 - 03:14 PM

Started reading, Spaw, and I got rather concerned but I was smilin by the end. Great update! UP, UP and stay downwind as much as possible eh?

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: catspaw49
Date: 10 Jun 13 - 03:06 PM

Bits of news! First, I was too sheepish to mention this but last Tuesday I was feeling pretty decent and Karen had done a lot of work in her side beds so I went out to look. Long story, short----I was so proud of myself for getting down a small slope so well that I was short on my step up to a sidewalk. Beautiful three point landing if you're a complete jackass. Scraped skin off both legs, hit hard on one knee and one ankle. The knee had a golf ball sized knot. The ankle was missing serious skin, about 1x4. Simultaneously hit with my left chest and left upper cheekbone. I was carrying a pan and by the time I dropped it my hands never got involved. I have some bruised ribs(as if I don't already have enough trouble breathing) and had a walnut sized lump on the cheekbone which has now dissipated down to the chin. Lump gone but I look like I lost at the Saturday night fights.

It was rough week as I sleep exclusively on my left side but it is improving greatly and I beginning to feel better. Saturday was my birthday and she may not need me she sure did feed me now that I'm 64! I didn't do squat and Karen did all the house stuff and supper----Ribeyes on the grill, lemon pepper scallops grilled as well, and some shrimp fresh from the gulf in a Thai marinade and glaze also grilled. Baked potato and she made a scratch peach pie......Spectacular meal. Yesterday we went for another birthday cookout for David (Connie and Wayne's son) son and I as we share the birthday.   I wore out pretty quick but it was good day. I'm feeling better everyday and almost back to where I was before tripping with my size 13's leading the way............

Today we went to Zangmeister Oncology/Hematology Center for my weekly blood test and Aronesp shot. Hemoglobin has risen to 10.5, the highest yet, and red blood cell count is as high as it has been as well. PLUS the platelets are almost there at the lowest end of the range which is real progress. Much as I hate the Vidaza (another round next week) I think it and the Aronesp are working.

Thanks to all of you for everything......and especially for making this this feel like the 'Cat used to be. Thanks for the UPS and thoughts and prayers.

AND TAM----I love ya'.....I wish I had some advice of any type but you have my best thoughts.....but you already knew that. The rest of you go back to doing that voodoo that you do sooooooo well (thank you "Blazing Saddles") and let's keep her trimmed for a long voyage together. BTW, the info paragraphs I'm also posting at FB .... These last two are for us.


Spaw

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: GUEST,pete from seven stars link
Date: 09 Jun 13 - 07:42 AM

with a prayer for wisdom in choice of medication and for some relief from the very unpleasant effects you describe. blessings   pete.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 09 Jun 13 - 07:11 AM

Thoughts and prayers, VT.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: VirginiaTam
Date: 09 Jun 13 - 06:05 AM

Thanks to all for good wishes and my best thoughts out to those in need and even those not in need. Condolences to those in grief.

Only 4 days off of the hydroxychloroquine (anti malarial, taken to control Sjogren's) and now waking several times a night feeling like my eyes have shards of glass glued to them and that my mouth and throat have been rubbed dry with cotton and steel wool. Salivary gland spasms are most uncomfortable, excruciating jaw pain. I drink a litre+ of water from late evening to morning. Sjogrens does terible damage to gums and teeth too so lots of toothbrushing, flossing, and mouthwashing going on to protect.

I am less likely to go blind now the drug has been removed. Though I am a bit worried about what the auto-immune exocrine disablement will do to heart, lungs and other vital organs. Joint pain and brain fog ain't much fun either.

I still have not made decision as to whether I will partake of the anti-TNF, but I do know which one it will be if I do. The monthly self inject, Golmumab seems the simplest. They all pretty much do the same thing and carry the same risks.

GP appt on Wednesday next to talk about this and some other problems which may or may not impinge on my decision.

Thanks again.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: billybob
Date: 09 Jun 13 - 04:43 AM

Hugs Ranger,morning crew, breakfast cooking in the Galley, how do you like your eggs?

Wendy
xxxxxxxxxxx :-)

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 08 Jun 13 - 11:08 PM

r1... my Ts&Ps are also with you and yours at this time. I don't usually hug but I am learning... (((r1))) I'd send another special hug and a belly scratch herein but you know I already have elsewhere.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ranger1
Date: 08 Jun 13 - 10:46 PM

Just stopped in for a quick round of hugs - both to give and to receive. Anyone who needs one, consider yourself hugged. Been having a rough couple of days myself, but I'll weather it, others have it worse than I do.