Log in to post a reply
Mar 21, 2018 12:15AM
I know that there are many of us out there who have, are, & will continue going through so much pain, frustration, limited activities, debilitation, as a result of these treatments & their many complications. My sister-in-law also had a lumpectomy, went through rads, then was told to take an AI (can't recall which right now). She is a supervisor in an occupation that requires her to be on her feet, moving from area to area. She has told me that when she gets home, she uses a wheeled stool to move around her home, because she cannot bear to be on her feet any longer, & often, if no other family member is there, she cries as she moves around, trying to function through the pain. This decision I've made to stop the tamoxifen has made me feel like I've found the way out of a prison of torture. I am so grateful to my dermatologist for wanting me to do the patch testing! When I first began tamoxifen post rads, & very quickly developed hip pain for the 1st time in my life, I went to a rheumatologist, to see if there were any pain meds he could recommend to get me through the 5 yrs. His recommendation, "Stop taking the medication; I would never want a patient to use a medication that is going to do so much damage." I thought he just didn't understand; now, I realize, he was absolutely right!
I hope that you can at some point, find therapy(ies) to help restore your mobility, strength, & lessen your pain. Do you have other family members that can, do help you? I certainly hope you do. My spouse, who is almost certainly undiagnosed Aspberger's, has gone from telling me he didn't really see what the big deal is when I was so emotional after my dx ph call, (since it was just a small tumor, good prognosis), thru realizing just how unsupportive emotionally & physically he'd been in our marriage, & stating he wanted to try to do better, to learning how to do so much more around the house than he'd ever imagined, running errands, & sometimes taking me to drs appts; this has been a big emotional-learning experience for him! He still often forgets, & verbally negates my pain on my days when I am unable to stand, move, like someone our age should, but now, at least on some days, his lightbulb clicks on & he jumps in to action to help. He has even learned to know when it's Mom's Day & my B-day, to give me cards &, sometimes, flowers! That is totally new behaviors for him to have learned. I have so much more to appreciate about him now than through all the other yrs of marriage. I know these new patterns, choices, efforts have not come easily for him.
I got clearance from hand/wrist ortho today to go ahead w/ PT, since due to the lymphedema, he can do no needles or surgery on my hand. My x-ray showed that I now have bone-on-bone in multiple places of the hand, which is stage 4 osteo. Not very long before IDC dx, I had x-ray of same hand, & only the arthritis in the thumb was detected. I am going to also be having PT on my achilles tendons. I will be so happy to get some strength & mobility back, which will help w/ the pain. I used to use the hot tub to stretch out my legs & lower back; I even used my weights in it. It would feel so good if I needed some pain relief. Now, of course, w/ the lymphedema, it's on the blacklist for me. Now, it has to be relegated to my fantasies! Boy, just how quickly all of our lives changed! Even w/ needing total knee replacement in one knee, hovering between stage 3 & 4 osteo in the other knee, the PT I've just finished for them, along w/ hyaluronic acid inject'ns so I can delay replacement in the worse knee, has made a really big difference in my legs' strength & mobility. I am so ready to feel like gardening again; what a blessing when we moved from the SW up to PA, where there are seasons & so much gardening choices!!!
I will keep you in mind this Shabbat, during the healing prayers, that the strength of community will lift you, guide you, bring you the wholeness of rest & peace that is Shabbat.