PORCH #1166 IS CLOSED! | Page 3 | ProHealth Fibromyalgia, ME/CFS and Lyme Disease Forums

PORCH #1166 IS CLOSED!

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sunflowergirl

Well-Known Member
Granni: I've been getting mytomycin since the standard BCG was unavailable at the time. The last surgery I had was in april then they started me on 6 rounds, once a week. 3 mos. later another check and since nothing showed I again had mytomycin, 3 rounds. In October another check and nothing showed so again mytomycin. BCG is now available but a nurse told me that if I start on that it would be 6 times, once a week. There is NO pill. Some do good with the mytomycin and then there are me. My MIL, age 94 started on the BCG two weeks ago and she was feeling OK, just a little nausea for a short time. And you have to hold it in the bladder for 2 hrs. It's my understanding that the mytomycin kills anything that's there....with the BCG it works differently, but apparently it's a good chemo and usually after about 4 complete rounds of it....over a year.....the cancer is usually gone.

I think what your DH, my MIL and I all have is the bladder cancer that can keep coming back until it's eradicated. And with the BCG extra precautions need to be taken using bleach around the toilet, floor, etc. and washing any towels, etc. I believe I was told BCG was originally a drug for tuberculosis.......I think that was the disease. it has live bacteria in it that's why the precautions.

I pray for your DH. And yesterday my SILs mother started an infusion for the blood cancer she has. She told me she had a little "flu like" symptoms from it.
 

springwater

Well-Known Member
Hello

here is a beautiful church in Slovenia


Just found it...i thought it was Wales in UK or something..turns out it was Slovenia, Kranj.

I pray for everyone with the health issues acting up. If only one could take an eraser and erase the conditions off.

Rock - i wonder whether your friends email got wiped off blank at her end or yours. Lol! These computers. Did you send the email back to her and ask her to re fill it? Better yet, send her a blank email yourself. Tell her its just to let her know you were thinking of her.

i have a habit of of buying poppy seeds and then having to throw it out because i havent used it. We use it in some curries but only some.

Mikie - i was laughing at your train of thought and you having to check them. When i heard about the school shooting, i just blanked it out. a shooting...in school. A school is the last place one should hear of guns going off, like churches, theyre supposed to be safe havens.

Im sorry you had to deal with a grumpy scary supervisor. i suppose life gets to everyone...if only they had enough control not to take it out on others. ive had to struggle myself with this particular emotion - anger. Its so easy to see it spiral and set off someone else.


******
Its a cool morning, i can see pink tinted clouds and very blue sky but no sun.

The Full Moon is not being kind...i got achy legs and pain in lower back...stuffy ear and bloating. Not to mention stiff shoulders and a feeling like what a dismal world this is. This is not normal. i had to do my healing stuff at full throttle.

The garden has been shorn off all the undergrowth...someone came & used the machine cutter. One big headache gone. Watering is such a chore now that the natural rains have stopped.

God bless
 
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Mikie

Moderator
Good Friday Morning, Dear Porchies,

Again, I got some good sleep. I think it's from the methylcobalamin B-12 liquid vitamin I'm taking. It comes in sublingual pill form but it contains the dreaded stearic acid. B-12 is a calming supplement. Grace texted me yesterday to say it's really cold up in WV. I told her to come down...Duh!!! She sent a pic of her little dog, Dusty, all covered up in his little bed. I gave him a little soft warm sleeping sack and he gets in his bed and covers himself up with it when it's cold.

I started reading the $.99 book I downloaded to the Kindle, Get Back Into Whack. It's the one I read about in my PH newsletter about the woman who cured her FMS. So far, the intro describes exactly my brain and cognitive problems. I've downloaded the free workbook for helping to deal with the problems. I did the first exercise; it's like breathing meditation and I know that helps. I'll continue with it and let y'all know how it goes. It's obvious she didn't write the book for monetary gain.

So excited--Claudia's DD got the children's librarian job she has been interviewing for. She has a masters degree in pediatric library science and that's such a narrow field. Many people never get to use their major fields of study in their jobs. She called me right away and was sooo excited, happy and relieved. DD lives in Denver so we have that in common. All three of us have been praying for this kid. None of us got the FJ question.

Sun, I hope the procedure went well and that you were able to sleep last night. When you check out Spring's church video, wait til it moves to the next video on glue gun painting. It's amazing and I'm already thinking how nice one would look in my guest bath that still has a Tuscan feel. I want to redo the painting in there and get some different colored towels. We have a very chi chi furniture store here and their decorators were helping people to de-Tuscanize their homes. That made me laugh.

Spring, thanks for posting that video. It reminds me of when I dream I can fly. Mom and I rode the train from one country to another in Europe and one of the things we loved seeing was all the churches. There was at least one in the smallest of towns. They looked like this one. The next video is the one I mentioned to Sun, above. I saw a pic of a professionally decorated bath in our paper. I can't find the wide picture frames they used but I can make them with my miter saw. Of course, I have to feel up to doing it. The ones in the pic were of single sea shells. The glue gun technique would be perfect for doing shells. I really need to start giving myself some time to do some fun stuff. I don't know whether it rained last night or not. I slept like a log. It was gray and dark all day. Supposed to rain today but not everywhere gets the rain. We need it.

I always say a prayer for people like the grumpy mean manager at Target and tell myself I don't know her story. Regardless, professionals know to leave their problems outside when they go to work. Judging from her demeanor and look, I don't think she is a professional and has probably never been exposed to better ways to handle herself. With unemployment so low, a lot of businesses don't have a lot to pick from when they hire. By praying for her and telling myself these things, it takes away any anger I might have at her. Too bad I didn't learn these things when I was younger. I'm sorry for your pain, Dear One. I hope you feel better.

I'm off to do you know what. Yes, I'm a creature of habit. No, not a nun, the other kind of habit. Hope everydobby has a wonderful windup to the week.

Love, Mikie

The AV Herx has begun. Glad those little beasties are dying and I want them outta my body but the purging is so harsh. Whine, whine, whine!
 
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Granniluvsu

Well-Known Member
Dear Ones,

I have been rushing around all days since I got up trying to get ready for the cleaning lady. I'm all worn out and at least threw in a wash which I should be taking care of now, but I won't. They should be here soon so need to type fast and I won;t get to everyone.

SUN - Thanks for the post and prayers . I knew you would giving me the info I needed. I had checked that out before but had temporarily forgot about it. Not saying much to DH about what I know YET, one thing at a time for him. If it were me I would just go with the flow and do what I need to do. DH is worrying and I know he has a negative image of chemo. but this one is local which is much better. Hopefully, when the time comes the dr will explain it in such a way that he won't spook and say I'm not doing that.I'll pop i when I need to as usual. First comes the surgery on Dec 12th!! One thing at a time for him, for sure, So sorry also about your MIL. Good for her at 94 years old. Sounds like a fighter and smart lady. More later, thanks so much for your input and knowledge on the subject. I did get some of it awhile back on line too. Hope you are feeling as well as you can be !!! Prayers also for you and your dear MIL !!

MIKIE - So sorry you are still feeling badly with that AV. Hope it hurries up and disappears for you. I started my immunosuppressant my first one today. So far no extra problems. I read it is best to take it in the morning when you get up about 1 hr before breakfast but an be taken with food if you get nauseous or upset stomach with it. So far so good. Hope this stuff helps !! Sorry for your grumpy supervisor that you had to deal with. Yes, we never do know what these people are going through i their lives too.

SPRING WATER - That picture and video you posted looks so pretty. I need to go check it out. Haven't had much time on the computer lately. Hope all is well with you and weather i good enough to get out a bit and see some friends.

JULIE - Hope you are enjoying your kiddos. Just try and take it easy a bit if you can. Hope your infected finger is better too.

HUGZ also to ROCK, BARRY, DUCKIE and everydobby else I may have forgotten. BTW, we were supposed to go out of town tomorrow to see SIL make his 4th Degree in the KNights of Columbus but not enough people got their forms in so had to cancel. Oh well, better luck next time and we will hope to be there, Still pretty chilly today but sunny. The next few days are supposed to get a little warmer before the next blast.

Love to you AWL,
Granni :)
 

bct

Well-Known Member
Hello All.
A short post 'cause of M.E. or me. Always wiped out.... Bah humbug!

Sun, interesting about the "scarlet worm". Actually, not a worm but a scale insect closely related to cochineal -- another scale insect used for red dye. Thanks for the interest that you aroused in me!
Yes, the homeless situation is awful! Even up here on the Lost Coast it is everywhere. So sad! I would hope that the govt. would step up to its base and create affordable housing for all who need/want it.... :mad:

Mikie, we're ranting about the same things! Homelessness, the environment , the extinction of so many species. Pesticides . Bah! Many of the pesticides that are banned in Europe are perfectly legal in this country. Say what?:mad::eek::eek:
Mikie, I hope you purge your little beasties. I just read that nearly all of us are carrying Demodex mites, but that they don't often cause problems. They eat the sebum of our hair follicles, but are considered "commensals" rather than parasites. Ya can't see them, but ......they are your companions!

Granni, more best wishes for your DH. And DON'T wear yourself out my dear!

I'm sinking now, slowly, but sinking. Hunt and peck. Hell, I used to be a good typist. Now I can hardly handle cursive....

I'm leaving the rest of the persimmons for the birds. Picked all I can (no Sun, I haven't a fruit picker), and am leaving the rest for the birds. A raven was at them y-day. I like ravens a lot. The Branches of the Jonathan apple are laden with fruit. I'm glad that R likes them. His now favourite apple, rather than Fuji's. As for the Fuyu persimmons, he ain't innerested....:p....more for me!

Love and Persimmons to All,
Barry
 

Mikie

Moderator
Hi, Kids,

Just finished watching a really dumb movie with Prime. Supposed to be a thriller but just turned out to be stupid. I should have known. It was released this year. When movies get on the streaming apps so soon, they usually stink. It's still better than what's on almost all the channels. There is only so much a person can take. Just got a notice that my HULU subscription is going up $10 a month. If everything starts increasing, I'm gonna drop it. Our Part B Medicare is also going up. At least, we are getting a very modest increase in our SS.

Granni, I'm glad that your med hasn't made you feel sick. I hope and pray it continues not to cause side effects and that it helps. Same for DH with his surgery and following treatments. Yes, localized chemo is different than systemic. My Herx-like symptoms are much better. Just been reading the new book on using the brain to help with FMS and basically everything else. It's making a lot of sense. It basically says a lot of the things I've found in other self-help books but is easier for me to connect with. Interesting stuff. So glad you got to drop in.

Barry, I was about to close this post out when I saw that you had posted. Thanks for letting me know I'm home to some tiny critters. Actually, I know our skin is crawling with all kinds of things. If I can't feel 'em or see 'em, they don't bother me. I really struggle with cursive. If my brain does something wrong on the computer, it's easy to correct but not when I'm writing with a pen. I hope you feel better, my friend.

I'm gonna have to call the doc about my shoulders. I need to figure out which orthopedic surgeon I'm gonna see. Always something!

Sending my love to y'all on this dreary, rainy Friday.

Love, Mikie
 
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sunflowergirl

Well-Known Member
Spring: Cute little church and I'm assuming that was a very narrow up to it.....for little cars? Take a picture of your home and garden sometime, we would love to see it.

Granni and Mikie: NO....didn't sleep last night other than 20 min. Intervals. Yesterday was AWFUL. Must have hit the bathroom at least 25 times. The nurse called me today to ask how I was doing. I told her I know what it is.....cystitis, very common from this chemo. She told me to go to ER if it wasn't better, but if not I'll give the doc a call on monday. The doc did say I could try aloe vera capsules to see if it helps so I ran to the market and grabbed them so I could get home and hit the bathroom again.

Mikie: Nothing about a glue gun came up.....only how to make a homemade rat trap.
 

Mikie

Moderator
Hi, Sun,

Hmmm, we must have seen different videos after the church video. I've posted it here. I'm sorry you are having such a problem with urgency. Does cranberry juice help you? You have to find a way to get some sleep. Let's hope neither you nor I will have a need for a rat trap of any kind. Yikes!



Love, Mikie
 
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