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Post by nlwilkins on Oct 19, 2019 5:33:18 GMT
I am so sorry you are dealing with all of this. Such a heavy load and the worst part, you cannot see anything changing in the future. I hear the sadness in your post and it makes me just want to reach through and give you a huge hug. There is nothing anyone can say that will change that.
You might sit down and figure out the things that really upset you the most and then brainstorm with a friend or a family member how you can make that "thing" more bearable. For example, the trip to the cancer treatment can become a little more bearable if you let someone go with you, or perhaps allow yourself a reward for doing it each time, something special. Take brownies to treat the nurses, or to treat yourself while waiting for the infusion to be done. BTW - do they give you lidacain gel to rub on your port an hour before your infusion? If not, shame on them. Ask for it!
If your doctor is not dealing with your pain you need to add another doctor to your team. My husband is in lots of pain and finally, a Pallative care doctor came on board and that turned out to be wonderful. There was no problem getting the pain meds he needs. In fact, we just picked up a refill with 100 Narco pills. All I had to do was tell the doctor's nurse that I was worried about running out over the weekend and she talked to the doctor and the refill was sent in to our pharmacy. I keep hearing about patients having problems getting pain meds due to the opioid crisis and wonder how come when we have had not one problem.
If your doctor will not deal with your pain, then ask for a Pallative care doctor. They not only deal with the pain, but also deal with a whole lot of other issues for you. Ours even made sure we had the medical type papers filled out for medical power of attorney, DNR for home and hospital (there are two different forms) and so on. They are wonderful and very supportive of any and all problems we have. They are not just for end of life patients but others as well.
Please take care of yourself and allow yourself to rest when you need to. Don't let what you can't do rule your life, but be sure to save your energy for those things that are most important to you. Sure, there are things that people think you should be doing as a parent and all, but don't listen to them. Prioritize what gives you pleasure and what is important to you and blow off the rest!
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ComplicatedLady
Pearl Clutcher
Posts: 3,037
Location: Valley of the Sun
Jul 26, 2014 21:02:07 GMT
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Post by ComplicatedLady on Oct 19, 2019 5:43:29 GMT
I was going to come in to this thread to reply yes—because I’m frustrated and overwhelmed with my job to the point of wanting to quit but I don’t know if another comparable job is out there.
Then I read your OP and realized I need to put that in perspective. I’m sorry you are going through health issues and I understand being the parent that doesn’t have the energy to help at home. Your frustration and discouragement is clear.
All I can say is take care of yourself, do what you can do, and let others help. That’s the hardest part for me—letting others help. Someone mentioned playing a board game with the family. If that’s too much, can you watch tv or a movie with them? Have them draw you pictures and describe them. My ds drew a crazy weather scene at a farm and we recorded his news and weather report.
Hugs to you. Infusions are no fun. All I can say is “hang in there” and give soft gentle innerweb hugs.
Know that you can always vent here!
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Post by MalleyCat on Oct 19, 2019 6:45:54 GMT
I’m sorry that your dealing with so much! When I had cancer and had to go in for chemo, I tried to look on the bright side. It was my chance to sleep in a big chair and sleep. I brought my nice soft down throw. Just keep trying to look on the bright side as much as possible, even if you need to trick your brain. 😉
Is there anything that the doctor can prescribe for energy? I know how hard it can be to be productive, when you have no energy.
I hope things improve for you.
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Post by tkdmom on Oct 19, 2019 11:16:31 GMT
A pain management specialist is extremely difficult. Call the practices in your state and get on their waiting list. What may serve you better is becoming part of a palliative care program. The goal of palliative care is to make you as functional as possible. It is not hospice. You continue to receive treatment. Many people are on palliative care for years. They will take over your pain management finding a way to make you as functional as possible. An integrated program will include physicians, nurses, OT/PT, psychologists, social workers and complimentary medicine practitioners. What you are feeling is normal. You need the support network to help you cope. Good luck.
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Post by peasapie on Oct 19, 2019 11:55:44 GMT
You’ve gotten such good advice. I’ve learned a lot reading the responses.
I can relate a little because I suffered from depression while being busy as a mom - not nearly your situation, of course, but it helped me to find little islands of happiness in my day where I practiced self care. A hot bath, or my headphones and music, etc helped my overall mood. I hope that, amid being a mom and all your other responsibilities, you are carving out some time to take care of you.
We are here for you
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peabay
Prolific Pea
Posts: 9,580
Jun 25, 2014 19:50:41 GMT
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Post by peabay on Oct 19, 2019 12:32:36 GMT
Jeez - I'm so sorry. That's just so much to have to deal with. Sending you love and hugs and support. You can vent here any time.
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Deleted
Posts: 0
Apr 20, 2024 12:01:10 GMT
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Post by Deleted on Oct 19, 2019 13:06:00 GMT
I'm so sorry you're dealing with this, sending you the gentlest hugs.
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Post by mikklynn on Oct 19, 2019 14:04:29 GMT
Gentle hugs, dear Pea. I have no advice, but I'll listen.
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Post by jeremysgirl on Oct 19, 2019 14:14:37 GMT
scrapmaven really gave some good advice. I second the therapist. I second possible depression meds. I send my hugs and I just sent up a prayer for you. Come here and vent to us any time. That is a lot for one person to handle.
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Post by LisaDV on Oct 19, 2019 14:20:46 GMT
No advice, just sending a pea hug your way. That is a lot.
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Post by quietgirl on Oct 19, 2019 14:33:36 GMT
I am so sorry you are dealing with all of this. Such a heavy load and the worst part, you cannot see anything changing in the future. I hear the sadness in your post and it makes me just want to reach through and give you a huge hug. There is nothing anyone can say that will change that. You might sit down and figure out the things that really upset you the most and then brainstorm with a friend or a family member how you can make that "thing" more bearable. For example, the trip to the cancer treatment can become a little more bearable if you let someone go with you, or perhaps allow yourself a reward for doing it each time, something special. Take brownies to treat the nurses, or to treat yourself while waiting for the infusion to be done. BTW - do they give you lidacain gel to rub on your port an hour before your infusion? If not, shame on them. Ask for it! If your doctor is not dealing with your pain you need to add another doctor to your team. My husband is in lots of pain and finally, a Pallative care doctor came on board and that turned out to be wonderful. There was no problem getting the pain meds he needs. In fact, we just picked up a refill with 100 Narco pills. All I had to do was tell the doctor's nurse that I was worried about running out over the weekend and she talked to the doctor and the refill was sent in to our pharmacy. I keep hearing about patients having problems getting pain meds due to the opioid crisis and wonder how come when we have had not one problem. If your doctor will not deal with your pain, then ask for a Pallative care doctor. They not only deal with the pain, but also deal with a whole lot of other issues for you. Ours even made sure we had the medical type papers filled out for medical power of attorney, DNR for home and hospital (there are two different forms) and so on. They are wonderful and very supportive of any and all problems we have. They are not just for end of life patients but others as well. Please take care of yourself and allow yourself to rest when you need to. Don't let what you can't do rule your life, but be sure to save your energy for those things that are most important to you. Sure, there are things that people think you should be doing as a parent and all, but don't listen to them. Prioritize what gives you pleasure and what is important to you and blow off the rest! These are great suggestions. A palliative care dr is an excellent idea. A palliative care dr is not an end of life dr, there are many misconceptions about what that word means. It is to give comfort and care, real solutions, to symptoms. In the absence of a palliative care specialist, an anesthesiologist may be able to help. Some of them are patients as a pain management specialist. This is who I see. I am sorry about all you are going through. It isn't fair, it isn't right. And on top of that, the only person who can truly advocate for you is you. Sending you good thoughts.
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Post by Tammiem2pnc1 on Oct 19, 2019 20:11:08 GMT
update in OP
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