For Older People with Sense

macatacmv

Hello all, 

oh oh, on new page, won't remember anyones's pior posts.

Hope everyone is having an easy weekend. 

Just know that I read daily but don't post all the time, because I am just tired of it all. Evertime I turn around it is time to do another 2 nebulizers. I have no energy, so I nap alot.

My DS has gone off island for the weekend, so it is quiet around here. Which is just as well, since I have been cranky lately and we end up fighting about dumb stuff like "What's for dinner?" He thinks he works so hard everyday and all I do is sit around. I see his point of view but can't muster up much energy to do anything about it. But at 27 y/o he is perfectly capable of fixing his own dinner. He is looking for a new apartment for the school year and will be moving by the beginning of Sept. So then I will miss him terribly, but not so much today.

Just wanted to say hi, now I can't remember what all I wanted to say.

(((((hugs)))))) 

barbe1958

Kaara, I'd LOVE to see them at home here!!!!

Gingerbrew

Barbe, when I was in my first year of all this my DD was quarellsom. She is ordinarily a really exceptional person and kind to all. I finally realized what was going on and told her about how argumentativer I had been with my mom when I was actually fearful that she was going to die soon. My DD's behavior changed right then. I wish someone had told me about that before my Mom passed away.    Maybe your husband or an aunt or uncle can put a bug in the kid's ear and they will step up. I am sorry you are in pain, pain sucks.  

Hugs Ginger 

purple32

macatac said

" But at 27 y/o he is perfectly capable of fixing his own dinner. He is looking for a new apartment for "

He sure is maca !

But you are right- you will miss him TERRIBLY.  I know you feel like crap right now, but ehebetr you can muster the  enrgy, just take some " extra' time to savor the moments with him now , while he is still at home.

Empty nest is so painful.

I wish you were feeling better and could enjoy him more.

I know how it feels to have no energy.  Take lots of pics of you two together while he is at home now.

(((HUGS)))

Alyson

Hi all

Firstly big hugs for you Barbe, well gentle ones. Hope pacemaker settles down quickly, DH has one and itsettled quite quickly.

Have had busy weekend. Saw my US cousin and husband for coffee before their return to the US. This caused partial cold war with my sister because she wasn't invited, mainly because we visited friends afterwards. For those who are unaware, my sister lives with us and I can see no other way unless we provide a place for her, it's a long story.

Then DH and I went to Die Walkurie which DD1 was singing in. Wasn't sure how DH would cope with almost six hours of opera but he enjoyed it. Christine Goerke, a leading US soprana was Brünnhilde. DD was a valkyrie or as they were refered to here, the valkiwis because they were all local singers. Anyway it was an absolutely stunning evening and the Ride of the Valkyries was amazing. As usual we we invited to the after party and I brought DD's flowers home. Christine's comment to me was that the mothers of the singers deserved to flowers.

Today after church we took my nephew, his fiancee and my sister out to one of the west coast beaches as the weather was quite wild here today. So not long home so must catch up on some olympics, yes, have watched most of the opening at various times.

Exhausted tonight but it has been a great weekend.

chrissyb

Barbe I sure hope you are beginning to feel better.  I think that sometimes kids act the as though they don't care in order to actually cope with what's happening.........you know, the if I don't acknowledge it it's not there thing.  It's hard to cope with at our end but an act of self preservation on theirs. Even though we know what they are doing it still hurts like hell as we are moms first and foremost and the caring nurturing thing just seems to grow stonger as we get older and they spread their wings more and more.  Hoping they come to their senses soon for you Barbe..........maybe a little word or two in their ears might hep.

Aly I would love to hear your DD sing.  Take it easy girl as you tend to over do most of the time.....lol.......and we don't want you getting sick again.

Nancy, empty nest can be good and bad...........the being able to really please yourself is great but the quietness of being alone can also be the pits.  Sometimes the relationship improves once they move out as they feel that they are no longer under the control of the parent.  Hope it gets better for you.  Sure hope that added med works for you as well.

Isabelle taking you off the surgery list!  Are you kidding me?!  It sounds like they are not sending you appointment dates or someone is interfering with your mail........either way it's not good.  Good luck on trying to get back on the list quickly and getting to the bottom of what the problem is.

Well for the next two weeks my sleeping pattern are going to be absolutely up the creek as I am staying up most of the night so I can watch the Olympics.  Thank goodness it only happens once every four years.....lol.  Pullover number two is almost complete.......I am just over halfway up the last sleeve which will probably be completed by the end of Olympic viewing tonight and then its just putting it together and doing the neck.  DH will sure have a good selection of pullovers for the future..........I have about another 100 balls of wool still to knit.

Love n hugs all!   Chrissy 

barbe1958

Thanks for all the ideas and commiseration ladies, I'm hoping my pity party is over.

Alyson, I got goosebumps just hearing that your DD was singing! You must have teared up...how amazing.(My two kids are musical but instrument-wise. My son has played for our Prime Minister and somewhere down in Florida and has cut an album with a swing band. My DD played the trumpet (son played saxophone) and I always enjoyed watching their performances. I played flute and picolo in school.) I'm SO impressed at your DD, though, the scenery must have been magnificent, and the music...oh my!!! I have wonderful pictures in my head. You must be SO proud! 

barbe1958

Okay, tell me if I'm wrong. My sister alluded to the fact that someone else in the family has health issues. I asked her who and what but she said she promised that she wouldn't tell. Is that cruel or what???? What the heck am I supposed to do?? I've emailed everyone and am awaiting replies, but who knows if "they" will be honest? What a mind-fuck. Sorry for the French!!

purple32

Barbe

Could it be your sister ?

lassie11

I think you did what you can. With the opening you have provided, anyone who wants to provide information can do so. If they don't want to tell, then there is no more to be done. It's their loss of support available for not speaking.

Anonymous

Today I was out in the yard watering and my husband came out with the phone and said it's your friend from Australia and I went Chrissy? and it was.   What a nice surprise, totally unexpected surprise!! ....we had a good chat....she was going to spend another night up watching the olympics in front of a fire.   Hard to imagine a fire with the heatwave we are having here. 

Alyson,  How wonderful to be able to see your daughter on stage like that.  I cannot carry a tune in a bucket so am always impressed by those who have true talent.

Barbe,   I think your sister is a trouble maker.   Why bring it up if she was not going to tell you?  I  hope you feel better every day. 

Alyson

DD about to sing - it was a concert version but brilliantly done.

purple32

What a wonderful photo, Alyson!
Thanks for sharing- you must be very proud indeed.

barbe1958

GORGEOUS!!!!!! Have I seen a pic of her before? She looks SO familiar!! She sure has the chest for opera! (maybe I saw a pic on FB?)

Anonymous

I was going to make the same comment about the opera singer chest.   Maybe we are just more aware of things like that.  She is lovely, Alyson.  

Kaara

Alyson:  Beautiful young woman...you must be very proud!

Alyson

She is certainly the right shape for an opera singer. And yes Barbe you may have seen pictures on fb, not sure about that one. I am going for a walk and a coffee. My house is wonderfully quiet with everyone away so I am sitting enjoying some peace but I do need a walk to try to get my joints working.

Thought they would improve now i have finished with the femara. Must get that sorted as well today, have to send in report on SEs, it might be quite lengthy.

Do hope you have all had a lovely weekend.

macatacmv

Hey Everyone, 

Alyson, your daughter is beautiful!!!!

Marybe & Chrissy what fun to have a chat.

Barbe, I would be sprouting french also. I hate when people play games instead of just being honest. Is it taking your mind off your chest?

purple, I am trying this new neb med but don't feel much different yet. I am very physically tired, tho. Sleeping alot. I am also having spasms in my upper back (maybe the diaphragm?) I cannot lay down flat on my back anymore. I am trying to figure out how to travel tomorrow to my MO appt with my nebulizer. It will be a long day. I have a friend driving my car. Just read the insert for this new med and it is for kids up to 8 y/o. What's with that? 

Anyway, I will be in the same hospital as the pulomary doc, maybe I'll just drop in to his office, too.  

Got all my questions, just wish I felt better so I could be more on top of things.

Nancy 

barbe1958

Nancy, I look forward to hearing what the docs say!!! Stamp your foot if you have to! (I did once and got the surgery I needed. The tumour was so big I ended up 3 days in ICU!! It was hidden behind my sternum but I could feel it when I breathed. The doc didn't believe it was that big and was stunned when it came out!) We're always so afraid of pissing off the docs, but I find I get more respect when I answer knowledgeably.

purple32

macatac

It may well be your diaphraghm.  What is the name of the neb med ?

If I were you , I would ask for xopenex ( pronounced zopenex) and aka as LEValbuterol in place of the nebulized stuff....ask your DR.

Good Luck to you.

You've been through waaay too much!

(((HUGS)))

barbe1958

Mac, looking forward to what your docs say tomorrow, keep us posted!!! (an 8 year old? Seriously, do these docs READ what they are prescribing? My doc opens his big blue book EVERY TIME he adds a drug to my cocktail.)

LynMichel

Hi everyone. It's been a while. I hope everyone is doing okay.  My personal life has been a little bit nightmarish lately.  So it seems I've been concentrating on that part of my life more than the BC issues.  But now I'm here with a question.  Did anyone ever have blood come out when their PS was inflating their expanders?  I did today.  My PS was concerned but not that concerned.  Now the breast this happened too was radiated and also had re-excision surgery.  I don't have an infection.

'Step with care and great tact And remember that Life's a Great Balancing Act
Just never forget to be dexterous and deft And never mix up your right foot with your left.' ~Dr. Seuss, Oh, the Places You'll Go

barbe1958

Hoping to hear some news mac!!!

Welcome bad Lyn, to the ride that never ends! 

LynMichel

Thanks barbe1958.  You are so right.  It's been quite a ride.

macatacmv

Hello Everyone, well it was a long day yesterday and I have been very tired today.

By the time I got to the office I needed to do another breathing treatment so I was struggling when I got in there and my BP was very high. (187/94) They were very kind and let me use the exam room for awhile to get my treatments done. My MO was very concerned and sorry that I have to go through all that I have been through. She thinks the bc issues are the least of my worries right now. She thinks that the pain I am feeling under my boob and the sore spot on my rib is just scar tissue. There is some lung ailment called BOOP that she mentioned and will talk to pulmonary dr about before my next appt in August. We discussed if stopping the arimidex for a couple of months might help me heal or at least just feel better. So I can decide about that in the next few weeks. I just have to give her a call. She thinks I must have been just real susceptible to the rad treatments. Anyway, it is just going to take some more time. She thinks I have been doing too much (doesn't feel that way to me)and I just need to concentrate on healing. Anyway it is just more of the same. She wants to see me in 6 months, since I see my PS in Nov. I am working on getting a new PCP, someone that I can connect with better. I met with my mental health person today, she wants me to think about an antidepressant instead of the adivan I am using to slow my heart down so I can sleep. She also wants to see me 2x a week. LOL

purple, the neb med is pulmicort, the next med in their arsenal is the xopenex. I heard my pcp mention that last time I saw him, but he doesn't want to see me again until after I see the pulmonary guy. I am suppose to call him at the end of next week. I really hope I start to feel better soon, but a lot of what I'm hearing is this takes a long time. 

Anyway no more water aerobics for awhile. sigh

On the home front, DS is home for a few days and then he goes for a week long trip on Thursday. He does this medieval camping stuff and they dress up like soldiers and reenact battles. They live like they are in those times. No cell phones and no modern amenities. It is not something I would like to do, but he enjoys it and about 10,000 other people join him in mid PA. So he is leaving gradually and even when he goes back to school he is only about an hour and a half away. He should be graduating this next semester. They (both my DS and DD) have been away from home for a while and then they come back for awhile and then away again. So constant change. LOL Doesn't really feel like empty nest, yet.

Life is the great adventure! 

Gonna watch more olympics.

Nancy 

purple32

macatac

The BOOP is bronchiolitis obliterans organizing pneumonia .  It sure does sound plausible. The best TX for it is steroids, unfortunately ( who likes ' em?)

But hopefully, that would work for you.

As for the pulmicort , that is a corticosteroid- I am surprised they dont have you in ADVAIR.

Also, the xopenex is good, but only as a rescue - you know you;re about to get really SOB ( short of breath) say , walking up stairs, shopping, whatever, so you take 2 hits and wait a few minutes. The best thing about xopenex is that it does not make your heart race , which its cousin , albuterol is notorious for .

I'm unclear as to how long you have to wait for the pulmno dr. , but when it comes to breathing, it's something you have to do every second so if it were me  (and it is NOT!) I would call . I would suggest to the pulmo dr. that you were told  it may be BOOP and ask about  a steroid possibly and xopenex for rescue prn and see what the dr. says . You do need relief.

Watch your bones for any long term steroid use , btw and best wishes to you.

In the meantime, pace, pace and pace!  I have  a feeling you will know what I mean.

(((HUGS)))

Kaara

Nancy:  I'm so sorry to hear that you didn't get a better solution to your breathing problems...only a "guess" as to what it is.  That sucks.  They should have never started your rad treatments when you had that bad bronchitis, and certainly you should get off the Al's until it is resolved.

I think what purple suggested is very good advice.  Try to get on a med that has the fewest SE's and the best chance of giving you relief.

Sending you lots of positive energy and prayers! 

macatacmv

Oh purple, I use advair 2x aday all ready. I am taking 10 mg of prednisone (down from 40), the 2 different neb meds and have a rescue pro air inhaler. Which I usually have to use just a couple of times a day. They are working with me, but it is just not resolving in a timely (my time) manner. I am assuming I have an underlying lung issue that was not very apparent before I was dx and getting the docs to address that is harder than I thought it would be. Feel like I need to find new docs.

Then we have my DS, who woke me up out of a deep sleep this morning to tell me he was leaving for work and not to worry he would get his own lunch. Usually I am up at the crack of dawn and making breakfast and lunch for him, just cause I can't sleep. So I was annoyed this morning. I think our honeymoon phase of "living together" is coming to an end. It is time for him to get back to school. LOL or at least out of my house!

Well, another day. I am going to straighten up the house because the wonderful woman who cleans for me is on her way over. LOL

Barbe, I think I have caught your electrical fritz phenomena, I got one of those electric adjustable  icomfort beds so I can raise my head so my back (whatever) doesn't spasm. I have had to send away for parts twice and the electrical guys came yesterday and reinstalled some and this morning it won't go back to flat again. At least my life is not dull.  

Thanks for the well wishes!

barbe1958

Yikes Nancy!!! Tell them to get you a new bed! They spend more on the tech coming to your home and 3 times is considered a "lemon" in the industry. I (used to) work in it; furniture and appliances. I miss the social interaction a lot, but not the regime of getting ready, driving and then being "on" for 8 hours and reversing the whole process. I don't know if I'll ever be able to work full time again! Part time won't pay the bills, so thank God that I have LTD.

As for your journey through the medical field, I know it sounds slow to others, but I get it. I went through a lot of that kind of thing, from specialist to specialist until someone finally made the decision to give me a pacemaker. I HATED having an appointment when they'd say "see you in 3 months"!!! Why??? Why not deal with me NOW?? I remember saying to my DH "I'm not a professional patient!" and now I am....sigh.  You just need ONE doc to finally get off the fence and become aggressive about your treatment. What has worked for me in the past is to say "my quality of life sucks right now because I'm afraid to (your words here) go out in case I fall or not be able to hold a grandchild". Docs tend to respond very well to the words "quality of life", it's like a bell goes off or something. Try it. 

purple32

Wow, macatav

I didnt realize you were already taking so much/ sorry.

Hold the DS close ... he'll be gone before you know it.

Yes, new DRS perhaps.    Good Luck.