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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/8/2013 9:47 PM (GMT -6)   
From one pain buddy to the next,  I hope you are doing a bit better, now this latest surgery is behind you.  Hope you are managing at least some decent sleep and rest.  Was thinking about you this evening, and wondering how you were doing tonight.
 
I will be leaving for our cruise on Saturday, and will be out of all computer, internet, and phone use for an entire week (by choice), so I will have to wait till I get back the following Sunday to see how folks are doing.
 
My best to you, and hugs,

David

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/8/2013 10:35 PM (GMT -6)   
David:

Hey pain buddy, how are you doing tonight? Thank you so much for stopping by and checking up on me. It's good to know that you care, today has been a difficult one for me. So seeing your post brought a smile to my face smilewinkgrin.

I sure am jealous of you and your wife, I hope you have a fantastic time. I'll miss not hearing how you are doing, but I think that being totally alone (less an emergency) with your wife is a very good thing.

I will be saying many prayers and sending loads of healing energy your way. I really hope that you have NO severe pain days, are able to walk around the ship with ease, and your fatigue is mild if not gone all together.

I will be looking for an update as soon as you are up to it. If you're not doing well, and can't post just drop me an email, and I'd be happy to let the PC folks know you're home but not doing to well. OF COURSE, that won't be the case, you are going to do great. Enjoy and have fun!!!

As for me, today was a terrible pain day. My back pain was OFF THE CHARTS. I tried to book my PT Appts but it's messed up by the hospital and I need my Dr to resubmit the request cry I need help right away I can barely walk the pain is so bad.

I saw my massage therapist yesterday, she said I was so tight that my muscles felt like cement. Said I was the tightest she's ever seen me. I noticed that when she'd hit a bad spot it would take my breath away the pain was so bad. My back is tender to the touch today sad This really is no way to live I say. Something is going to have to give, I swear, or I might just lose my mind.

The one good thing from the massage was, my baby toe and the next one over have been numb since my tendon ruptured in August. Her working on my low back seemed to have released something as those toes don't feel as numb as they did.

As for my surgery, I'm doing okay I guess. I'm flaring quite a bit, but that was expected with my lupus. My incision is open and looks bad, but it's not infected. Saw my Dr yesterday, he said its going to take awhile for it to heal. No immune system = poor healing. He felt bad that it came apart. Will f/u in two weeks.

That's all for now, I'm wiped and need sleep. David thank you for being there for me. Please know I'm here for you anytime you need me. Have a great trip.

Hugs,
Barbar
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/8/2013 10:55 PM (GMT -6)   
Thanks for the report, though its not as good as I had hoped.

Still worried about this cruise. My wife is still not over all her post spine surgery from late last year, plus being overworked. And I am in much worse condition then when we went last year. So our game plan is to scale back a lot of extras and unneeded activities. There's so much to do on the ship, we don't even care about doing a whole lot in Freeport or Nassau, being that we have been there before. Mostly going to be a chilled out vacation this time around.

So sorry you had such a bad pain day. Not doing much better myself. I now have lots of new severe pain moving into my left hip and left leg and foot. Bad enough that my right side has been fully racked with pain for 3 plus years. Being left handed, my left side has always been my strength. Today, I could have used two canes to walk with.

Had to go to a business meeting downtown, and ended up parking many blocks away. By the time I walked, rode the elevator, and got to the meeting, I was in pretty severe pain levels, despite the meds.

Still hurting a lot tonight, but having taking all the pain meds I am allowed to take for the day.

I sincerely hope you get some decent sleep tonight. Tomorrow is a stay at home day for me, but sometimes those are more tiring then the days I am running around doing stuff.

Really hoping this cruise will give the both of us a break from our normal daily toils and troubles.

I will check back with you, for sure, before I leave Saturday

My best to you,

David
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 10/8/2013 11:13 PM (GMT -6)   
Barb,
So sorry you're having trouble with your back on top of everything else. I hope it's related to getting back on your feet and will work itself out soon.

David,
Sorry your pain is migrating. I can imagine how frustrating that must be, I hope you can chill on your trip.

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 10/9/2013 8:36 PM (GMT -6)   
 
Hi Barbara,
 
      I can't imagine what you are going through.  You have been on my mind a great deal and I had been wondering how you were doing.  I was sorry to hear that you have been experiencing so much pain.  A gentle ((((((((hug)))))))))) is on its way from me to you.   And Dave, I don't really know you, but I am sending you a gentle (((((((((hug))))))))) too.
 
Laura

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/10/2013 9:09 PM (GMT -6)   
Barb, probably be my last post here until we get back from our cruise vacation. We are still leaving Saturday morning for Charleston, then the ship leaves Sunday. Won't be back home till the following Saturday evening.

Went to PT today. Went in with pain level of 3 (which is low for me), fatigue 5. 45 minutes later, just doing normal stuff, pain level was 6, fatigue was 8. That's how fast I can go downhill. As we were walking laps (just 3 for me), my therapist watched my left hip go out 5 times, almost bringing me to the ground. The pain is increasing more and more to my left side, which is bad, because that is my strong side (being a lifetime lefty). Had I not had my cane, down I would have gone. On top of that, now getting back groin pains on both sides, even though I have done nothing to strain myself.

When the therapist did her monthly assessment, she noted no improvement on the right side (never has been one in over 3 years), but noted marked downhill on the left side. It really is a losing battle.

Please take care of yourself while I am gone, hoping not to read anything real bad on your side when I get back. No internet during this time out, for starters, they charge one dollar per minute to use the internet on the ship, I would never pay that. Plus we want a complete break from all technology.
------------------------------------

Lynn, thank you. Please keep an eye on Barb for me while I am gone
-------------------------------------

Laura,

Thanks, I have followed Barb over here to your Lupus site. While I have never had that in my life, I have worked with several men who's wives were dealing with major Lupus events. Two of them died as a result by their early 50's. So I do know the pain and suffering that comes along with Lupus, and you and all the other Lupus members have my sincere empathy for what you suffer daily.

David
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/11/2013 6:37 PM (GMT -6)   
Barb, had one last shot to post here before leaving. So good luck to you, hope you can keep your head held up above your pain and other problems.

Promise I will check in on you as soon as I get back home, which should be next Saturday, the 19th.

Until then, take it easy.

And to your friends here at HW Lupus, I hope all of you do well too.

David
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 10/11/2013 8:58 PM (GMT -6)   
BARB,

I AM LOOKING FOR YOU ON FB NOW. TRY TO FIND ME. FRIDAY 10 PM.

LINDA
Moderator in Chronic Pain and Fibromyalgia Forums.

Believe in yourself. Be kind to fellow humans and animals. Take time to smell the flowers and the coffee.

And by all means, when you are down, ask me for help. I will be there.


Linda

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/11/2013 10:34 PM (GMT -6)   
Hey David:

I put a quick post in the PC forum on your thread to just wish you well. I hope you have a great trip with your wife.

I'm so sorry to hear that during PT yesterday that your pain and fatigue jumped up so much and came on so suddenly. I hate to hear that your primary good side is weakening so bad. It seems that it's progressing faster and faster. What did your therapist recommend about your hip going out on you? Do they have any type of suggestion as to stop that from happening.

Is your Doctor aware of the hip problem being as bad as it is? I'm glad that you have a cane to help you, but please be very careful that you don't fall, that's all you need is to fall and break something. The back groin pain must be terrible. I know that I have really bad pain on my lower back and there are times I can't take it and I yell out in pain it's so bad.

David, I'll be praying for you and sending you all the positive and healing energy that I can. I want your trip to go well and I pray that it will be lower or normal pain days for you. I pray for NO severe pain days, I want you to be able to enjoy your trip and your time with your wife.

I know that you're worried about walking around on the ship and I hope that you don't have any problems with it. You'll be on my mind through the week, and I will be happy to hear that you and your wife were able to relax and enjoy yourselves totally.

Don't worry I'll be fine here and you pain buddy will be here when you return. Just go and enjoy yourself, try to focus on feeling good and having low pain levels. Just relax, take it easy, and rest the whole trip. Looking forward to hearing from you in a week from tomorrow.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/11/2013 10:45 PM (GMT -6)   
Lynnwood and Laura:

Thanks ladies for you well wishes. I've always had pain in my lower back, it's partly why I had joined the CP forum for some help over there and well .......

Anyway, we can't seem to get rid of the inflammation in my lower back which causes most of my pain. It's in the L5/S1 area really bad, I was having issues with just walking when I wasn't in a cast/boot for my foot. Since rupturing my tendon and spending the past 8 weeks in either a cast or boot, my back is way beyond tolerable.

I spent all of yesterday laying in bed, crying a lot of that time, as I just couldn't get any kind of relief from the pain. Today has been another difficult day for me, I slept till 12:30 this afternoon, I'm so tired and feel really weak. I'm going to go out on a limb and say I most likely need a blood transfusion. I see my oncologist on the 22nd of October. I do, however, see my primary care doctor on the 17th. I'll ask her to check my levels and if I need the blood she'll contact my oncologist right away.

Lynnwood I hope things are going well for you and that you're feeling well. Looking forward to hearing from you soon. Laura how are you feeling tonight? It's almost midnight here on the east coast for I'm thinking that you're getting ready to go to bed sometime soon. I hope that you're feeling better than you were last weekend.

Linda I'm sorry that I missed you here and on FB. I'll make sure I speak to you before you leave on your trip.

Here's wishing everyone a goodnight with low pain levels. I hope we all have a good weekend.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/11/2013 11:56 PM (GMT -6)   
thanks barb
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

LexiRae
Veteran Member


Date Joined May 2012
Total Posts : 828
   Posted 10/12/2013 4:07 PM (GMT -6)   
I'm back....TONS of stuff going on...whats your schedule like this upcoming week Barb? Can I call you? I wasnt sure what you'd be up for post surgery. I'm so so so sorry about your back...I know how much super tight muscles can hurt AND hinder and cause major sensitivity. There's really no way to get comfy other than a muscle relaxer...

I've been thinking about you a lot...

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 10/12/2013 9:12 PM (GMT -6)   
 
 
Hi Barbara,
 
        Brightened up by your sweet message :-) .  I am feeling better this week-end.  I have been taking it easy and being conscious of reducing my stress, which has been helping immensely.  The fatigue has lessened and the joint achiness is minimal.  I am still dealing with some G.I. inflammation, which has been on-going and becoming more of a headache.  If it continues much longer, I will make an appointment to see my doctor and go from there.  The weather has changed here, bringing a sense of fall to this beautiful landscape.  I just wish we had more color!!!!  Sorry to hear that you are suffering from so much pain.  I totally get what you are going through.  Wish there was more I could do from this opposite coast.  Sending you another gentle ((((((hug))))).
 
Love, Laura

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/13/2013 3:22 AM (GMT -6)   
Laura,

Thank you for your hugs and kind words. Sometimes that enough for me to pull out of feeling really blue. Somedays are just so bad and no matter what I try physically it doesn't help, but a kind word, a gentle hug, or a reminder that there are others that care I'm suffering, makes it easier for me. Does that make sense?

We've had fall colors on the leaves for sometime now. It was pretty cold here last weekend and I'm thinking we may have our first frost here soon.

My back pain just doesn't want to ease up at all cry. I'm beginning to get very frustrated with my back pain, I'm unable to sleep thru the night and I have no muscle relaxants to take to help with that either.

Well, I hope that you have a great day today. I'm very happy to hear that you're feeling better. Please remember to pamper yourself on day's off. Make sure you get plenty of rest and try to keep your stress levels low.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 10/15/2013 12:26 PM (GMT -6)   
Hi Barbara,

Hope you are beginning to feel better post-surgery and not having any complications. What's it like to walk again? (lol)

Had a successful weekend in NC with friends - not much leaf color, though. Back home and so love my own bed, shower, and kitten!!

More later,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 10/15/2013 8:13 PM (GMT -6)   
 
 
Hi Barbara,
 
     I have been feeling much better and decided not to make an appointment with  my Rheumy.  The GI inflammation has settled down.  I also have less joint pain and fatigue.  I can imagine the colors of fall in a dreamy sort of way.  Here on the north coast, we have some deciduous trees to add a sparkle of color to the mostly green conifered landscape.  I have always wanted to drink in the New England fall.  Maybe when I retire!!!  I hope that you are getting stronger each and every day.  And that you are getting the rest that will help you heal.
 
Love, Laura
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