First Humira doses in the bag and thank you's

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SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 11/2/2009 5:27 PM (GMT -7)   
Had my first two Humira doses yesterday and one this morning and all seems to be going fine tongue
Just wanted to thank golitho, Peggy Baggins and Ivy6 for helping me through this process - your advice was greatly appreciated - one day maybe I can return the favour smilewinkgrin
Hopefully this is the med that puts me into remission and gets me off the dreaded prednisone.
Will keep updating on my progress.
Thanks again
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone
Bowel Resection Sept. 07


golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 11/2/2009 9:32 PM (GMT -7)   
Great Jo, let us know how your body responds? I found it really hard to come off prednisone so can offer you advice there too when needed.
What dose of mtx are you on? will you continue with that too?
Best wishes, Happy Melbourne Cup Day! golitho

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 11/3/2009 1:52 PM (GMT -7)   

Wonderful, fantastic, glad the first are over for you, no thanks necessary, you helped me a while back, and that's what we're all here for - to help one another... :-)     I'm sure Humira will help, as you said keep us posted.

My treatments of Remicade have kicked in after 2 sessions, I'm getting out of bed in the mornings with no effort, no back pain, little pain in the ankle/foot but much improved from really bad pains.   During the day if I do too much it's straight back to how it was, but it's all do able at the moment and I'm so so hopeful that with more treatments and a few months down the line that I will be able to have at least a couple of weeks where I'm good.  See the specialist at the beginning of December where we are dicussing doubling up on Mthx so that may help it along.

I actually managed to go to a Melbourne Cup function yesterday in the city, suffering this morning with ankle/foot pain and swelling, but worth going and having fun.  Didn't win though shakehead

Take care and have a good weekend.

Peggy


SydneyJo
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Date Joined Mar 2006
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   Posted 11/3/2009 3:44 PM (GMT -7)   

golitho - I am currently on 25mg MTX orally and tapering the pred and currently at 20mg of pred dropping down 5mg a week. The lowest dose of pred I have been on the past few years is 15mg so I will be interested to see how I go when I get lower than that. I have been on pred for 6 years straight now so I know I have to go really slow when I get under 15mg. I will probably hit you up for advice though smilewinkgrin   Sheesh its hard to pick the Melbourne cup winner turn . How are you feeling lately?

Peggy - Im so pleased for you that the Remicade is helping, you are right about giving it a few more months - hopefully it will be even better for you smilewinkgrin Lucky you to go to a function - I stayed home in the air-con as it was 39 here yesterday, its only 24 today so much nicer.

Have a good day everyone.

Jo


Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07


golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 11/3/2009 3:50 PM (GMT -7)   
Hi guys, got my new splint made pre melbourne cup, its bright blue. Now I feel like Zena Warrier Woman with an extra teflon coating or something!! Its only temporary, I go to the RPA OT clinic and they have run out of supplies, understaffed and they're generally not happy. Two full timers left and neither have been replaced. Only one is going to be and not until December. Poor old hospitals are obviously trying to save money anyway they can.
I'm so glad the remicade is working, Peggy, is it a hassle getting the IV? You didn't want to try embrel?
I'm still struggling with this flare. Started the HRT but it will be at least 2 weeks before we know if it will respond. Meanwhile I'm swallowing panadeine forte every 4 hours or so.
Any good news Jo on the humira front? I loved waking up to no stiffness the first time. It was so easy to get out of bed, like someone had given me a new start. Amazing.
I'm crossing my fingers fo you.
Forgot to say on your other post that I'm a Sydneysider, inner city head. Its Arthur itis whos in QLD.
What part of the mountains are you in?
Best wishes, golitho

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 11/4/2009 3:24 AM (GMT -7)   

A very hot day yesterday Jo, thankfully indoor function held at the restaurant my son is a chef at in Sydney.  On coming outside when my husband picked me up the heat hit like opening the oven door!!. Today fog, rain and cold here down south and looks to be this way for the weekend! shakehead

Golitho: the IV's aren't too bad, they make you as comfortable as they can,offer drinks and lunch while your sitting there for 4 hours and always the other chairs are taken up by others having their treatments, so if you like you can chat, watch t.v or just sleep in your chair. You just feel so tired when it's finished and I sleep for ever..  As for Embrel it wasn't offered, I've been giving myself Humira injections (plus Mthx) for the past year and needed something a little stronger and more direct into the blood system.  I'm on Mthx as well and that's being doubled at Christmas to see if it helps even more. By the way 'Blue is a very fetching colour and my favourite", plus your so right about the hospitals, but I go to the POW in Sydney and they are great, but under staffed.

Have a great day everyone.

Peggy wink

 


golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 11/4/2009 8:51 PM (GMT -7)   
Jo thats a big dose of prednisone! I found it started to get hard for me after 10mg, took weeks of aching limbs, I hadto go really slowly off those last 10mg. But I toughed it out with extra mtx, I'd only been on 10mg of mtx so she upped me to 20mg to cope with the loss of prednisone. The prednisone seems to hate leaving your system, I've never really felt as good off it. It seemed to get rid of all the niggly pains for me. Lets hope the humira does the magic for you. It can be such a wonder drug for so many people. It took a couple of doses of humira before it worked fully, maybe even 3. I can't remember now and its only about 15 months ago when I started. Foggy brain syndrome!
Had a bad morning, trying to get 4 students finished with their prints. I helped out stupidy, now my wrists are twice their size and I damaged my new splint! The velcro has come unstuck. So I'm back to my patched old one. My knees really hurt and I have a new groin pain.
I've taken more pain killers and feel so exhausted, but that was my last teaching class. All assessments now, so more manageable for me. Its so frustrating not being able to do my normal routines. I'm feeling sick of being sick, its 6 weeks since my surgery, I just want this body to settle down and behave itself. Sorry for the rant on your post Jo. Getting tired of it all. So wearying isn't it?
Hope you're both feeling good with this cool change, golitho

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 11/4/2009 11:50 PM (GMT -7)   
You can rant and rage as much as you like, that's what we (the site are here for) - sorry Jo hope you don't mind me butting in. lol tongue
Golitho, I'm so sorry your going through a tough patch at the moment, my thoughts are with you. As you said your last class, so perhaps you can be kind to yourself now. I hope so.
Take care
Peggy

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 11/5/2009 2:34 AM (GMT -7)   

golitho and Peggy - no more apologies for venting to each other on here - we all need to do this and to what better people to do it to than someone who is going through the same thing. I find it a great comfort to tell my woes and especially to 'listen' to other peoples.

So I say vent away! Here I go lol

I have been suffering with a massive headache today - sheesh I could just about chop my head off and all I can take for it is panadol (due to my Crohn's disease I cant take anything stronger or I will have hell to pay tummy-wise) skull   Other than that I feel good - a bit achy in places but thats good for me tongue

golitho - Im glad that your classes are going to be less strain on you (physically, anyway) I too push my body through the frustration of not being able to do 'normal' things - Im the queen of denial - until it all falls down around me turn Hope you are resting at home now!

Re: the pred - I had hit the pred up to 40mg when I first realised I was flaring and am slowly going down 5mg per week - Im really scared to do this too fast and will be asking the GP for some 1mg pills so I can taper very slow past 15mg - will try and discuss a plan with her about tapering when I see her.

I live closer to Penrith, but I was born and bred at Camperdown, even worked at RPA from when I was a teenager till I had my first child - had  my 4 children at KGV Hospital. If I move any further away from the city I will end up at Broken Hill yeah

Peggy - how are you doing? and you never 'butt' in smilewinkgrin

Off to make a cuppa

hope we all feel great tomorrow smilewinkgrin

Jo


Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/8/2009 9:02 PM (GMT -7)   
My youngest was born in KGV! At the birth centre with a Jamaican midwife. I had my 2 oldest in Ireland, hubby is Irish, so we lived over there for 5 years. Such an international lot in Sydney.
I get headaches often, drink more water, that seems to help me, glad to hear you feel good.
I feel worse... don't feel the HRT is helping at all. I think I'll ring my doc up if this continues after the 2 week mark. This is so stupid, humira due tomorrow so hoping that will help. Gotta fly, kid pick up time...golitho

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 11/9/2009 4:50 AM (GMT -7)   
I can't claim to have had my boys here in Australia, they were born in the UK, we moved here 8 years ago, best thing we ever did. Became Australian's 6 years ago and proud to be one.
 
As for how am I feeling, not so good these past few days, lots of pain in my ankle/foot (more than usual).  I'm due for my next Remicade next week so that should improve things.  Today I had the usual blood tests that we all go for, only today it seemed like a lot of big bottles being taken, so a sore arm due to her not taking any notice of me saying to use the other arm for it as the right has difficulty due to so many times used. Never mind she did get it all, that's something.
 
Well I'm off to rest, feeling a bit flat as just had a bad conversation with my mother who is in a home in the UK and doesn't remember who I am! Always leaves me like this, it's like a 'living death', I believe I lost my mother 6 months ago when she forgot who I was and no longer resembled the woman I used to call 'mum'.
 
I hope your both doing well apart from the usual aches and pains.
 
Peggy

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 11/9/2009 7:01 PM (GMT -7)   

golitho - Sorry to hear the HRT is not helping - when is the two weeks up and what do you think will be suggested as a substitute? Thanks for the heads-up on the water - Ive actually been taking Claratyne and that has helped, but will push the water next dose. Hope you are resting inside and away from this heat - UGH.

Peggy - Are you able to have your Remicade shots in fewer week intervals? Maybe its losing its effect inbetween doses - can you ask your Rheumy?

You made me feel bad about my mother today (she lives in a granny flat out the back of our house) and she was whingy yesterday and today I was prepared to tell her I would swap my health for hers anyday (she has great health despite smoking 30+ a day!) when I realised she is entitled to have 'off days' and I should just listen without being mean.

Im sorry you are going through this with your mother. It would feel like you have lost her already and being so far away would be sad too. Thanks for reminding me that Im lucky to have mine (even when she is whingy :-) ).

I hope you both have a had a better today, stay out of the heat.

Jo

 


Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 11/9/2009 11:16 PM (GMT -7)   
Oh Jo I'm so sorry I didn't mean to make you feel bad about your mum, but your right, your so lucky to have her here and near to you.  It's been a long road for me as mum and I were so very close even though I was one of 9 children.  That being said my family have always been very jealous of me for no apparent reason, and as I'm in Australia and can't do anything to upset them, it was a blow to be sent an email from their solicitor saying I had been divorced from them all!!  So these past 4 months have been hard with my illness (which I never told anyone about in the UK) mum not knowing me anymore and my family offically getting rid of me.....  Still what doesn't kill you makes you stronger. :-)
 
Still a little down today but it will wear off soon, it always does as I remember my boys, husband and friends and the wonderful life I have here. There are always people far worst off than yourselves don't you think.
 
Anyway, how are you two doing in this heat, I've stayed out of it these pass few days and will continue to do so, it is nice though don't you think?
 
I will discuss the remicade infusions when I see the specialist in a few weeks time, I suppose they have to give it time to see how it goes first, at least the first 3 months.  Still looking forward to having the treatment, never thought I'd hear myself say that. smilewinkgrin
 
So here's to a better day for all of us tomorrow.
Peggy.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 11/10/2009 10:49 PM (GMT -7)   

Peggy - you didnt really upset me - my Mum and I have this thing were Im forever guilt ridden about things regarding her - for never any good reason - does my head in sometimes turn

How awful for you - being 'divorced' from your family - it is the last thing you need while you are so unwell - sounds to me like they dont deserve you anyway!

I had to quit my job today, as I really could'nt tell them when I would be well enough to come back. they were really good about it and said to call in the New Year and they would slot me back in. The Humira has done the trick for my Crohn's, just feel fatigued and am having Nanna naps a few times a day - but Im not complaining, anything is better than the pain I was in :-)

Its suppose to be 36 here tomorrow - UGH - although it could be worse we could live in Adelaide yeah

golitho - how are you?

Hope everything is ok.

Jo


Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/11/2009 9:49 PM (GMT -7)   
Hi guys, I've been ridiculously busy this week. Had assessments all day Tuesday so I was on my feet from 9-5 and writing reports. My wrists are still sore today! Plus my knees are still recovering.
So feeling a bit sad and sorry for myself.
Its been two weeks of HRT and I can't say I've noticed anything yet. I feel my joints are actually sorer but then I had two very busy work days which involved being on my feet. I'm living on panadeine forte so now I'm getting cramps from constipation. Can't win!!! I'm tring to have a recovery day today, just pottering around but I do have to take my son to dancing later.
My daughter finished her school cert exams, so one less family stress. My middle child has his last exam tomorrow. We're getting there.
My house is progressing wonderfully, putting in the lounge/dining/kitchen flooring. Its an old hardwood timber my hubby has stored for years, looks beautiful. Its very exciting but I keep getting mini panic attacks about the move, I hope my body has recovered by then. Maybe I could take a massive dose of pred to get me through. Not that I want to do that either.
At least I have another rheumy appt in December she will sort me out again!!!
Hope you two are good.
Peggy sorry to hear about your family, families can be so hurtful. It must be horrible losing your mother to dementia and scary for her not knowing everyone. I'm glad you're happy in Aus. I hope you've got your adoptive family around you. We've done that, our friends become substitute Aunties and Uncles and help us out when either of us is in hospital or needs help. Sydney seems to be filled with so many orphan families. We have an orphan Christmas too. Meet at a park and everyone brings food and we have a massive picnic together, very supportive.
Best wishes to you both, its so hot I keep feeling like I'm in a continuous hot flush!
Jo, enjoy your Mum, I hate mine being so far away in NZ, she is 83 now and becoming frail. Everytime I see her I worry I won't see her again. I ring her every week.
Hopefully I'll be less busy next week, golitho

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 11/12/2009 10:40 PM (GMT -7)   
golitho - you are still doing too much there nono   although, renovating a house sounds fun, I would be like you and want to dive into doing everything.
Im glad exams are nearly over too - my uni daughter is killing me with her anxiety and this is only her first year! My oldest daughter has her last exam for her Police stripe and her results are still sent here, so i have the added burden of reading them out over the phone to her - luckily they have all been passes and hopefully, so will this last one.
 
Peggy - how are you? Hope you are doing better.
Better go and start preparing dinner.
Jo
 
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/13/2009 12:46 AM (GMT -7)   
I know I do too much but with 3 kids and working part time I find it hard to cut back. Every year I say I'm going to take it easy but every year something comes up and I jump for it again, its just my nature I've decided. I should join a yoga class to try and destress myself though (its hard to find the time!)
Hope you have a great weekend, golitho

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 11/15/2009 4:53 PM (GMT -7)   
Hi guys,
 
Sorry for not replying it's been a tough few days...... not feeling so well at the moment, I feel like someone has let the air out of me! So tired, in pain and just feeling out of sorts. I put it down to needing my next treatment (this wednesday) it appears it's working as I felt so much better and able to cope the first few weeks after the last one and then slowly pain has increased along with just feeling tired.  On top of that a few things occurred, my son split from his partner of 3 years, all very distressing not only for them but as a parent to see your grown child go through such hurt and dividing a home. Also friends were invited down to us for a 3 day break (and a golf day with my husband), they know the situation with regards infections etc and the dangers of me getting near anyone with them, only to arrive on the door step after hours of driving with a full blown chest infection and cold!!!!  I was shocked to say the least and my husband wasn't best pleased with them, reminding them. Oh we forgot one says, only to be told by the other that they discussed it and decided it was o.k..!  I stayed so far from them and was worried the whole time as I don't want to be ill let alone get my treatment cancelled.  Oh sorry a moaning day today, or as my hubby says 'your just not in a happy place'.
 
I'm working from home today as I was going in for a meeting etc but found out our partner is very sick with a cold and cough......I try not to make it effect my life and be house bound worrying about the slightest illness here and there, but you just have to access the risks.  Sounds like the pass week has been a fraught one for us all by your comments above, I hope that this week will be better for us all and that your kind to yourselves and rest up when need be.
 
Until next time, take care and thinking of you both.
Peggy
 
 

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 11/16/2009 7:51 PM (GMT -7)   
Peggy - I feel the same way you do re: catching viruses etc from people and warn family and friends to let me know when not to be near them. That was especially inconsiderate of your friends to expose you to this, while all the time knowing that they shouldnt. I hope this doesnt affect you in anyway. You and I take our TNF doses the same day - at least we have something to look forward to together smilewinkgrin Bring on tomorrow - although I still feel pretty good from my loading doses, I do feel like Im due for another dose (my neck and lower back are reminding me today).
Golitho - how are you this week - not overdoing it I hope nono
Its pick up time soon so better get a move on.
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/17/2009 2:07 AM (GMT -7)   
Hi Jo and Peggy,
Got my new splints today, made out of thicker plastic so these should last my abuse!!! The old ones I snapped from gripping presses at work and they kept going out of shape in the heat. These are tougher and so far are pretty comfortable.
I'm still struggling with painful joints, hoping my GP will have some suggestions. Its nearly a month on HRT and no relief yet, maybe its the wrong one or maybe it just takes longer.
I'm suppose to be going to a 70s party on the weekend, I was really hoping I'd be good by now.
Sounds like we're all a bit low. Hope your biologicals have kicked in! Maybe its the heat? Lots of maybes...
Just keep smiling, golitho tongue

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 11/17/2009 2:48 AM (GMT -7)   
Golitho - I'm so pleased for you with regards the splints. Sorry your still in pain, have they suggested how long it will take the HRT to kick in?
 
Jo - so same day hey... how are the injections going, are you o.k doing them yourself or are you getting your gp or daughter to do them? It's good that your feel they're having some effect, no matter how small.
 
I'm still down shakehead but looking forward to my treatment tomorrow, not only for relieve but some down time, sitting still for 4 hours, no phones, no intruptions etc.  I'm just being dropped off at the hospital door and will ring hubby when finished.  My choice,  I've had family with me on last visits and it's time to do it alone.  It gets boring and I'm more worried about who ever is with me being bored than I am myself.  Now it's on my terms. tongue   then it's straight down to our home to rest up.
 
Maybe it's the moon that's making us all feel unsettled this week  sad   So here's to next week. lol tongue
 
 

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/17/2009 8:59 PM (GMT -7)   
Good luck Peggy, thats what puts me off going on the infusion, finding the time to do it!!!
But I'll see what my rheumy thinks in december.
I was suppose to feel better 2 weeks into HRT. So they're wrong!
I am fairly stressed though.
Best wishes to you both, golitho

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 11/18/2009 9:30 PM (GMT -7)   
Hi guys,
 
Well that's another one in the bag, so they say!  Feeling a little low on energy today, but's that's to be expected.  Going to have a lie down after writing this. :-)   The clinic wasn't as busy yesterday, but saw a couple of regulars there. For me it was a bit of a reality check day, as they say there's always someone worse of than you....I saw someone I've seen before only they had gone down hill with their MS and at 27 had, this week not only loss the feeling in her legs but her bowel and bladder she no longer has control over, all very upsetting and a tearful morning in the clinic. We are like this site there to support and listen to each other (as well as get our treatments) but sometimes it's hard as you think to yourself 'there but by the grace of god go I'!....
 
Jo how did your treatment go yesterday of Humira?       Golitho, as and when you ever need this treatment you will find the time I promise as believe me it works, not a complete miracle cure, but certainly eases the pain and discomfort for a few weeks and well worth it. Having said that I'm sorry your still not feeling to good.  Seems we all see our rheumy's in December.
 
Well it's very hot here today (36C) no air and I'm tired, take care the both of you, and if I don't speak before then, have a great weekend.
 
Peggy smilewinkgrin

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 11/19/2009 12:57 PM (GMT -7)   
Glad you got new splints golitho - hope they last your torture of them :0
Hope your infusion went well Peggy and it kicks in for you pronto.
I have had trouble staying on this site it keeps kicking me out - so have to be quick on here.
My injection of my last loading dose is done and I feel good, so here is hoping it lasts. This heat is killing me though and its only getting worse the next few days - 40 out here today - UGH.
Hope you are both staying cool.
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 11/21/2009 8:13 PM (GMT -7)   
Jo, I know this may sounds silly but what did you mean by 'first loading dose?'.  When I was taking humira, I just started with doing the first and then every 2 weeks there after, is yours different?  Hope it helps more as the days pass.
My ankle/foot is very painful still (3 treatments in) I go and see the Rheumy in a weeks time so well see what he says, early days I know and it is making me feel better in every other aspect of the disease, but the foot is the most painful. 
 
The heat today is a killer, 41C in the shade and 90k's wind speed, in fact my husband has just been called on a shout (RFS) so bad conditions today here.  Friends in Roylston are o.k (did you hear about the fire yesterday?) they have 1,000 acre sheep farm and the fire went passed them, they stayed to fight it but are o.k. Their brothers farm next door got hit a little, but all's well thank god.
 
I had my appointment for a check up with the eye specialist again, more bad news, this time along with macular puckering (which thankfully hasn't got worse) I have calcium build up around the nerves in my eyes causing decreased sight going forward. I have to go back in 6 months (if not before) and if it gets any worse they will start treament of eye drops to try and clear it?  I'm feed up with the lot of it, I truely am, cry but I keep smiling smilewinkgrin fooling everyone except my husband and boys.  Another thing to add to the already growing list! shocked After that appointment I had to go straight to the next which was a breast screening due to the insistants of the specialist at the hospital and my rheumy.  Apparently two breast cancers have been found by him while under treatment, so I guess we need to be safe don't we?
 
Well that's enough grumbling for today, tomorrows another day.......
 
 
So keep well the both of you, keep cool and safe and look after yourselves.
Till next time.
Peggy.
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