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Personal Update 2/14

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Posted 2/17/2012 2:11 PM (GMT -5)
David,

Getting back on the rehabilitation plan has to be a good idea. Just take it slow and don't do too much at the beginning.

I learned during rehabilitation for rotary cuff surgery that the therapist is not always on the same page as the patient regarding what we are capable of doing. Many of them need to thrown away the canned program and concentrate on the needs of the patient. I got very angry last fall with one of the therapists insisted that I do a certain strength exercise even though I told him the joint had a lot of inflammation and I was in pain.

Try to do a bit of exercise every day, and vary it up. Day before yesterday I walked a couple of miles, yesterday I went to the gym and did 45 minutes on the stair climber and stationary cycle, and today I just rode on the bicycle outdoors for about ten miles. But at my age I have to take care to not overdo because if I do there will be a deep fatigue for several days in a row.

Take care, and I hope your new program works.

San Carlos
Posted 2/17/2012 2:20 PM (GMT -5)
Aimzee and Ron,

Thanks for the thoughts. Yes, both water therapy and conventional massage are offered as part of my Oncology Rehab program. On the water massage part, 2 issues are present. Since I have the urosotmy, being in a soaking tub or pool, would likely loosen my device, and if it came loose, would have a big problem replacing it if I were away from home. Also, I am not allowed to take tub baths or use our hot tub, because I am high risk for UTI.s And while on the fentanyl patches, its very dangerous to be exposed to hot water or tempertures, as it will cause a larger release of morphine than is considered safe. I will talk to the therapists about it next week. Good thought though.

Being that my oncologist is also a pain management specialist, I feel that we are doing all I can on the pain front. I have accepted the reality that I will be dealing with severe chronic pain for the rest of my life. As long as it can be controlled, I am ok with it.

Today is a good example of how unpredictible a day will be. Started the day with a fresh fentanyl patch, but it takes a few hours for it to kick in. Was 1 1/2 hours late on the breakthrough med, because I forgot to bring some with me, and that was enough to leave me in excruicating back and hip pain. Got the meds in me, back home, but takes at least an hour for it to kick in.

I am thankful that Ron's pain isn't worsening or spreading, and hope that he has more good days than bad. Wish I had some snow to build a snow man with, lol. We haven't had a single snow flake or pellet of sleet so far this winter, been way above normal most of the time. Been the cheapest heating season yet so far for us, so that's the good side.

My best to you both.

David in SC
Posted 2/17/2012 2:57 PM (GMT -5)
Thank you, David.  I appreciate your thoughts.  Yesterday was the first time all season that there was snow staying on the ground.  This is Michigan and our area had something like 77 inches last winter.  Yes, lower heating bills for us, too. 

Now, I understand about the water therapy.  Maybe my mind was focusing more on your legs.  That sounds silly, doesn't it?  Not having an actual idea of your "set-up" even though you have explained, I thought maybe leg lifts with very light weights - in the water.  Whew!  I hope that makes some sense.  My heart is in the right place as we both share a concern.  Ron does ask about you. Our son is David, so he remembers your name. :-)

Do what you have to do.

Much peace in your life,

Aimzee

Posted 2/18/2012 12:15 AM (GMT -5)
We are all in this together, Aimzee. Same monster, different course of action. Didn't know you had a "David". Lucky guy!

David
Posted 2/18/2012 4:40 AM (GMT -5)
I am sorry about all this grief, but I have to ask you has anyone looked into a workup for what has been called spinal claudication? Some of your symptoms could be a result of that. Might not be PC related at all. I did not see any reference to that.
Good wishes
Posted 2/19/2012 9:54 PM (GMT -5)
Good to hear from you brain surgeon, ltns. hope you are faring well.

No, never even heard the term before. It's PC related, in the sense that its the result of all the damage that was done to me
as the result of faulty SRT, which in turn damaged my bladder and bladder neck extensively, enough to require an urostomy. My oncologist feels that the bulk of the pain, is wide spread nerve damage as the result.

None of this pain existed prior to SRT and the subsequent damage. Thanks for the tip, I will look into the subject, and mention it to the dr. on my April visit.

Wishing you well,

David
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