So. I am stopping Rapamycin because it has not helped my quality of life. In fact it seems to be worsening it at least in terms of energy/ability.
It helps with one type of pain but that doesn't matter if I keep crashing so hard I can't even feed myself.
I kept going with the medicine hoping the extra fatigue and crashes were a temporary side effect. This is/was the only pain relief I get.
In the 7 weeks I've been on the medicine there have been 8 full days where I do not have the energy to eat. These are not necessarily consecutive days. I did not count the half days where I could eat one meal but not two others.
I have also had several major crashes and before starting the medicine I was trending the opposite way and getting less crashes.
If I get any worse I will be 100% bedbound and unable to bathe myself. That is the only thing I can do on my own right now and it costs me the entire day's worth of energy.
The subset of people with similar conditions as me that take rapamycin and respond well to it report the opposite. This just isn't the treatment for me.
I also used up the last bit of energy I had trying to try one last time to get a primary care doctor. This was my last hope.That was a huge waste of time. For some reason the past few years doctors offices will not give any information unless you fully register with them ,give health insurance info and such. This kind of cognitive activity really drains me and it's always ended up not being worth even trying.
I need a break. These crashes can become permanent baseline worsening events .I don't know if I can run this account anymore as I am too sick to care for myself. This could be temporary or it could be permanent. I am trending downward fast.
I should be able to continue the sbi giveaway on my main account as that is just cut/paste and my husband can help with it if need be.
I do not have the cognitive function or energy to say much more on this.
Bells functionality score: 0
Pain scale 8 I get zero treatment for my pain so that's awesome right now. No the ER will not help.
Please do not comment and tell me to hang in there or stay positive. That will only hurt me right now. If you have the urge to do so please do not comment.I mean no offense by this.
I don't know what else to say
I think it is better like that. If we can realise at times that some treatment are not helping us, we should stop it and evolve it. You took the right decision as it is better at times to change treatment
I am so sorry to hear about this. I strongly believe that it will be advisable for you to let go of that rapamycin if it is not helping your health. Let go of that treatment and try another one
I'm sorry to hear that, that really sucks!
Certain treatments do not work the same way for every person. The negative response to Rapamycin isn't a very common case but whenever it happens, the best option is always to consult a good medical practitioner or the medical personnel who instructed you to take Rapamycin in the first place. Cutting it off entirely could stop the fatigue and energy loss but may lead to a more intense disadvantage.
You mentioned that the situation with health practitioners in your area, this shouldn't be a barrier. There are a thousand and one others who would be more than happy to help you out. Please put this into consideration and take care of yourself;)
!LUV
The prescriber was through an online company they just said to stop taking it. They provide meds not health care.
I have tried for literal decades to find one doctor just ONE who takes my health issues seriously. They do not exist. I am too sick to keep trying.
"Millions missing "is a phrase for a reason. There are millions of people just like me completely abandoned by the medical system . Zero treatments.
i could help if you are willing, and open to all possibilities.
spoonies, wongi sent you LUV. 🙂 (2/3) tools | trade | connect | daily
Made with LUV by crrdlx.
!DHEDGE
This post has been selected for upvote from our token accounts by @fc-curation! Based on your tags you received upvotes from the following account(s):
- @dhedge.bonus
- @dhedge.pob
- @dhedge.cent
@fc-curation has 2 vote calls left today.
Hold 10 or more DHEDGE to unlock daily dividends. Hold 100 or more DHEDGE to unlock thread votes. Calling in our curation accounts currently has a minimum holding requirement of 100 DHEDGE. The more DHEDGE you hold, the higher upvote you can call in. Buy DHEDGE on Tribaldex or earn some daily by joining one of our many delegation pools at app.dhedge.cc.
Congratulations @spoonies! You have completed the following achievement on the Hive blockchain And have been rewarded with New badge(s)
Your next target is to reach 2000 upvotes.
You can view your badges on your board and compare yourself to others in the Ranking
If you no longer want to receive notifications, reply to this comment with the word
STOPCheck out our last posts: