Aa
musings while on treatment
Hi All. I am now on week 33 of 48. IFN/riba. Virus undetectable week 12.
I thought some of you might enjoy this list of my feelings around getting help and support during this treatment, and dealing with side effects. It's been a rough one for me, but it will be over soon enough and with a lot of grace I'll be SRV.
1. I hate asking anyone to help me for anything. even though it may cross my mind that it might be a good idea, I hate asking and I usually do my best to get by without help.
2. In the event that I actually do need something, and I am out and about, there are really only certain personality types that are inclined to help. Im not sure why that is, maybe perhaps because a person in need appears "needy" and it makes people shy away. So, it sort of takes me back to number 1, even though number 1 is a truth in itself.
3. Pain medicine, anti nausea medicine, acid reflux medicine, and fever reducers, actually are really not very effective. (and there is no cure for fatigue)
4. Asking a doctor for help with the first part of number 3 arouses suspicion in doctors. Therefore, go back to number 1 again.
5. All of this leads me to the understanding, that endurance is really the only option anyway.
6. Some people are just plain nosey but they disguise their nosey-ness in the form of compassion.
7. Not all the people that you are friends with are the type to want to come by and visit a sick person, and it doesn't mean they don't care. (actually, I prefer in general to not have visitors, so its actually ok, its just something interesting Ive noticed).
8. Im sure there were other things I wanted to write, but due to interferon "brain fog", I cant remember. (ok then I remembered)
9. Some people come out of the woodwork to help. It's just their nature.
10. Some people want to help but they are extremely non-intuitive and want to over help.
11. When people approach me asking me how I am I hate telling them how bad I feel and I usually just say I'm fine.
12. Ambien is an effective drug and may the most effective invention since antibiotics.
13. Some of the people who are willing to help me actually seem to need more help than me.
14. Even if I do feel I am going to drop, it's still just easier to just greet people to act as normal as possible. (in spite of feeling awful).
15. People tend to be generous with giving unsolicited advice.
16. It's easier to just smile at them rather than explain that my anemia is due to destruction of red blood cells and not an iron deficiency.
17. Procrit is another "world's greatest drug invention" but if you think your HB is back to normal and you stop taking the injections: watch out! Because HB can drop just like that.
18. Hairloss is somewhat physically painful. Who would have thought?
19. No one seems to talk much about intolerance to heat but for me I feel like I'm suffocating in the heat.
20. No one seems to talk much about the endless crud that comes out of their ears that seems a bit fungal.
21. I can't wait to be able to produce my own tears through my own tear ducts. For now I just have to keep using eyedrops.
22. Actually, when experiencing multiple side effects, one sx can actually eclipse the others until that one improves and then the other problems become more important. For example, when I'm nauseous, I really don't notice much else except for the act of vomiting or the need to vomit. But as soon as that goes away, I can feel the body aches again.
Ok thanks for listening, it was kind of fun to write, even though it's a bit sad.
I thought some of you might enjoy this list of my feelings around getting help and support during this treatment, and dealing with side effects. It's been a rough one for me, but it will be over soon enough and with a lot of grace I'll be SRV.
1. I hate asking anyone to help me for anything. even though it may cross my mind that it might be a good idea, I hate asking and I usually do my best to get by without help.
2. In the event that I actually do need something, and I am out and about, there are really only certain personality types that are inclined to help. Im not sure why that is, maybe perhaps because a person in need appears "needy" and it makes people shy away. So, it sort of takes me back to number 1, even though number 1 is a truth in itself.
3. Pain medicine, anti nausea medicine, acid reflux medicine, and fever reducers, actually are really not very effective. (and there is no cure for fatigue)
4. Asking a doctor for help with the first part of number 3 arouses suspicion in doctors. Therefore, go back to number 1 again.
5. All of this leads me to the understanding, that endurance is really the only option anyway.
6. Some people are just plain nosey but they disguise their nosey-ness in the form of compassion.
7. Not all the people that you are friends with are the type to want to come by and visit a sick person, and it doesn't mean they don't care. (actually, I prefer in general to not have visitors, so its actually ok, its just something interesting Ive noticed).
8. Im sure there were other things I wanted to write, but due to interferon "brain fog", I cant remember. (ok then I remembered)
9. Some people come out of the woodwork to help. It's just their nature.
10. Some people want to help but they are extremely non-intuitive and want to over help.
11. When people approach me asking me how I am I hate telling them how bad I feel and I usually just say I'm fine.
12. Ambien is an effective drug and may the most effective invention since antibiotics.
13. Some of the people who are willing to help me actually seem to need more help than me.
14. Even if I do feel I am going to drop, it's still just easier to just greet people to act as normal as possible. (in spite of feeling awful).
15. People tend to be generous with giving unsolicited advice.
16. It's easier to just smile at them rather than explain that my anemia is due to destruction of red blood cells and not an iron deficiency.
17. Procrit is another "world's greatest drug invention" but if you think your HB is back to normal and you stop taking the injections: watch out! Because HB can drop just like that.
18. Hairloss is somewhat physically painful. Who would have thought?
19. No one seems to talk much about intolerance to heat but for me I feel like I'm suffocating in the heat.
20. No one seems to talk much about the endless crud that comes out of their ears that seems a bit fungal.
21. I can't wait to be able to produce my own tears through my own tear ducts. For now I just have to keep using eyedrops.
22. Actually, when experiencing multiple side effects, one sx can actually eclipse the others until that one improves and then the other problems become more important. For example, when I'm nauseous, I really don't notice much else except for the act of vomiting or the need to vomit. But as soon as that goes away, I can feel the body aches again.
Ok thanks for listening, it was kind of fun to write, even though it's a bit sad.
Ha ha, I like the bit ultraviolet blood recycling method. That's rich. Yeah someone I know wanted to heal me with magnets and was quite offended that I wasn't at least going to give them a chance (as if it was me who was the fool for not trying this easy cure.)
You know if natural cures actually worked, and there was evidence and research on it, I would certainly be open to it, but as far as I can see, there is not a shred of evidence that they do anything for anyone in any condition. Only anecdotal evidence. No thanks :) - I'll inject the poison that has been proven in 1000s of clinical trials to eradicate this disease. Because I actually do want to get rid of it.
I love #23. Sounds like you got a real honest-to-god "over helper". Post-its on the cat. Hilarious.
Yes I may be one of the last 48 weekers. I live outside the US. I could not get insurance in the US because of my pre-existing condition, and these were the drugs available to me at a discount (INF/riba). Waiting for Obamacare to kick in, moving back to the US, and getting access to the new drugs seemed to be a pretty costly alternative, so I just went ahead with the treatment Im currently on.
May I be the last. Lets hope no one else will have to go through it for this length of time.
You know if natural cures actually worked, and there was evidence and research on it, I would certainly be open to it, but as far as I can see, there is not a shred of evidence that they do anything for anyone in any condition. Only anecdotal evidence. No thanks :) - I'll inject the poison that has been proven in 1000s of clinical trials to eradicate this disease. Because I actually do want to get rid of it.
I love #23. Sounds like you got a real honest-to-god "over helper". Post-its on the cat. Hilarious.
Yes I may be one of the last 48 weekers. I live outside the US. I could not get insurance in the US because of my pre-existing condition, and these were the drugs available to me at a discount (INF/riba). Waiting for Obamacare to kick in, moving back to the US, and getting access to the new drugs seemed to be a pretty costly alternative, so I just went ahead with the treatment Im currently on.
May I be the last. Lets hope no one else will have to go through it for this length of time.
23. Your friend just can't understand why your held up in your house and not inviting them over. Why? Because I don't need you to see your stacks of supplies that look like provisions for survivor " Hepatitis C Island"....or "post
its" on everything including the cat...so your remember cats do eat food.
its" on everything including the cat...so your remember cats do eat food.
Hope you got something from your doctor for that nausea and vomiting. All of us who experienced that on treatment took Zofran. You don't want to be throwing up the treatment drug. It works really good. Puts a stop to nausea
super fast.
super fast.
Only on 12 weeks but I can relate. Yesterday was an unending series of nausea and vomiting. About once a week I get the unsolicited advice from people telling me they, the amateur knows best how you should treat your Hep C. Their methods range from colloidal silver to ultraviolet rays on a blood recycling methid. I am admonished for buying into the pharmaceutical "lies" that will kill me taking these proven Hep C drugs. As I said previously 48 weeks is soooooo long I couldn't do it, glad I've only got 8 left.
Hi Everyone.
Thanks for all your replies. Love them!!
I had just started writing this as ranting text to a friend of mine, then I thought I've got to share this with this forum.
This is no picnic. And I still have 15 weeks left and everyday is a schlep. But yeah, to find humor in it, makes it all tolerable. Remember the Reader's Digest, "Laughter is the Best Medicine". Isn't it though?
Ok just for fun, I invite you all to add your own things to the list. There are so many things I didn't mention at all. I would love to hear it from you.
Thanks for all your replies. Love them!!
I had just started writing this as ranting text to a friend of mine, then I thought I've got to share this with this forum.
This is no picnic. And I still have 15 weeks left and everyday is a schlep. But yeah, to find humor in it, makes it all tolerable. Remember the Reader's Digest, "Laughter is the Best Medicine". Isn't it though?
Ok just for fun, I invite you all to add your own things to the list. There are so many things I didn't mention at all. I would love to hear it from you.
I'll just say, I hope and pray you make SVR. I've been down your path years ago. Was und with normal alt/ast after months of treatment and relapsed. SugarHoneyIceTea. Couldn't finish the 2nd round, just too sick. There are folks here that know what you're going thru. btw I got a chuckle out of #13 :)
Thank you for the list, I can so relate, I am starting week 6 of 12 with sovaldi, interferon and ribavirin, and had a kind of low day today, have the blues, so it gave me a laugh. Funny how my hair hurts, it really does! I have had several people who have been a great support for me, including several on this forum. So far the benadryl has helped me sleep. And good to be reminded of the red blood cells going up and down. I have made good friends with my heating pad, it helps more than pain relievers.
Yes, thank you for the laughter. I remember giving up trying to explain the anemia as well. I am not currently on treatment after up going a liver transplant back this past August 2013. I had done the treatments three times over the years, virus "cleared" and then came back. None were a great deal of fun. I am now waiting for the no-interferon pill.
One thing is so certain - a really good sarcastic, wicked sense of humor is absolutely necessary for maintaining sanity and health.
Thank out for your wonderful prose.
One thing is so certain - a really good sarcastic, wicked sense of humor is absolutely necessary for maintaining sanity and health.
Thank out for your wonderful prose.
Thanks for posting this, Bravo! Humor at times like this is very helpful. Here's a hearty CONGRATS for hanging in your tx, and thanks for sharing. Interesting observations that we all can relate to. It's as good as a stand up comedy.
I like the comment about the Ambien and agree with you. When I have to take it - I only take a quarter of a tab and it's all I need.
I like the comment about the Ambien and agree with you. When I have to take it - I only take a quarter of a tab and it's all I need.
Yes...thanks for writing that! I related to several. Maybe the entire list!
Thanks for the laugh/memory! Lol!!
Keep truckin! Wishing you SVR!!!!!
Kitty
Thanks for the laugh/memory! Lol!!
Keep truckin! Wishing you SVR!!!!!
Kitty
It my be kinda sad ....but amazing in a different way. This is very well written. 18. Hairs loss is somewhat physically painful. Who would of thought? What a great observation and truth.
Thank you for taking the time to write this. I'm glad I took the time to read it.
I enjoyed it. By the way......Do you need any help? : )
Hepatitis C treatment is an unforgettable journey. It sounds like you know that already.
Best to you
Thank you for taking the time to write this. I'm glad I took the time to read it.
I enjoyed it. By the way......Do you need any help? : )
Hepatitis C treatment is an unforgettable journey. It sounds like you know that already.
Best to you
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