Radiation recovery
Comments
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Sew (and Joan) that's exactly what I thought! I just pictured us sitting and chatting the afternoon away
.Next is a Cali meet-up...Kate? Cindy? Sew, of course. Who else is in this big beautiful state? (I guess I should start work first and see if I ever have time to breathe again!)
Hugs, all...if I'm absent for a couple days know I'm thinking of you.
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Sab....You go girl...knock their socks off tomorrow...after all, you've already done all your homework and have your presentation under your belt and approved! Got your outfit all laid out for the morning?
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SAB - Ooo who 1st day!
Congrats on your new position...backup backup alarms set, gas tank full, lunch money, new clothes laid out, it's gonna be a good good day! Happy Thursday!
(((Squeeze))) we are in your right pocket...oh we will keep the roar down maybe some cakeball crumbs and confetti but we will be on our almost best behavior...party poppers go off at 5pm!0 -
Hi to everyone. I have been keeping up but preoccupied with my father whose condition is declining. He has cancer of his bone marrow and is very vulnerable. Cindy your words helped a lot. The kinds of things you did for your mom, we are trying to do for dad. We got him to his beloved college football game last week, and this week we will hang out with him and do some home cooking while we watch our alma mater play football via the Internet. We three sisters all stay close and look after his needs. Our brother owns businesses in Europe and we let him know when he needs to come home. We have been given the word that Dad's immune system is all but non-existent, and he needs transfusions every other week. He is feeling peaceful and loved and at night when he goes to bed, he says he feels mom's presence. Poor dear, sweet man. We are cherishing every moment.
Joan, I feel your pain in regard to your grand kids and your daughter. It is so difficult to sit by and watch our kids and grand kids struggle. Prayers for them as they settle into their new life. Hope your SIL will soon be there with them.
Kate you keep on fighting the good fight. I hope surgery will work out for you. Glad you are having a little rest.
Run and Brookside, so glad you got to meet up. Run I hope you get your skin issues figured out.
Janis, sorry you are having troubles again. Chronic neck pain is the worst! I am no stranger to that.
Love to all of you amazing sisters! You are in my thoughts and prayers.0 -
Funny, I hadn't read RunFree's post, but wrote almost the same thing. What fun that was!
SAB, I guess this is the Day! Enjoy. Lots of new procedures to learn, lots of new friends to be made.
Gigi, so nice to hear from you. You and your family sure have been through a lot this summer.
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Morning ladies - We are having an upside down day today here in Mi. It has been really hot and humid for 2 days and I tried not to venture outside. Today starts out at 70 and will drop down by tonight into the 60s. By tomorrow we will be in the 50s. So get the blankets out. This really is some crazy weather we have all been having this spring/summer. I still have hydrangeas blooming and some Lillie's.
RunFree - So glad your mammo was good. Mine too so we are on the same schedule. Glad your legs are holding out.
GiGil - Sorry about you dad. It has been a tuff summer for you. We will talk soon.
Kate - How ya feeling? I hear the weather broke so you are probably planning some great outside things.
Catching up on everyone and will post soon. I am jealous of the chance to meet any of you. Maybe next year when I go to LA I can run down and have lunch with Kate. I am also planning a trip to Laguna, Carpenteria and Santa Barbara. I miss those places. Once I can sell this place I can decide where I want to live. I have been giving a lot of thought to staying here just because I have a wee bit of family around. However when I did the math on how many times they have been here to see me and how hard it was to get someone when I was sick I think I am not staying. I don't like the weather and everyone around me almost gets paid to be here. I can do that anyplace really. I had given a nod to Vegas and also back to Cali before. I might consider it again.
I spent the last two days with little or no leg strength again and it is getting old. makes me so depressed. Still I am feeling that I can weather this drop in steroids. I am in week 5 now and can not say I really feel good but I am determined to keep trying. I keep thinking back to when I did feel good...not in the last 3 years and my steroid dose was about 8mgs then. I see my PCP tomorrow and am going to get a referral to a rhumatologist. They work with steroids quite a bit and might be more knowledgeable on stopping. if that does not work I am off to U of Mi again for a auto immune specialist there that could help. I just think if I could get the right team of Dr's I could do this with less problems.
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Bunkie I hope your feeling better today.Hang in there.
Did you get your referral to the rheumatologist?
Gigil nice to hear from you.I'm sorry about your father.(((hugs))).
I found out today that my friend died yesterday morning around 5:30am. I had her on my mind and even had a really weird dream before I woke up that morning.I dreamt that there was a sink hole in my backyard swallowing up the yard and there was water just rushing down the sides of the sink hole filling it with water.I was afraid the water was going to rise until it overflowed the hole and would flood the basement.Luckily I woke up before that happened.I distinctively remember the sound of the rushing water was so loud.I believe when we dream things like this it usually has meaning behind it.I wonder if it has anything to do with her death or passing into heaven. Although at this time I had no idea she had died.It wasn't until this evening that I found out.0 -
Sab good luck on your job today
Gigil I am sorry you father's health is declining
Bunkie I hope you will feel better soon
Josie I am so sorry about your friiend
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Thanks Kate !
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Josie, I am sorry to hear about your friend. What a rotten reason to be sick for so many years and to die young. Your dream is amazing!
GiGiL, how sad about your father's decline. You really have a lot on your plate.
Bunkie, you are really fighting the fight! I'm glad you think you can stay the course with the reduced steroid dose. I hope you get to see a rheumatologist and/or an auto-immune specialist and get some things figured out. The leg strength problem sounds pretty hard to take.
SAB, I can't wait to hear how your first day went!
My legs are itching, itching, itching, and the rash seems to be spreading though it's a smidge lighter in color. I wish I could just put it out of my mind at least long enough to get ready for my party Saturday night and to enjoy my birthday on Monday, but it is distracting.
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Gigi, it is so sad to see a parent at the end of life..how wonderful that you are helping your dad "live" by planning meaningful moments and surrounding him with care. I felt a calming tone in your words...but I know how much it can hurt.
Josie, I am truly sorry for your friend and her family. It is a tragic outcome. I hope you will find some special memories to remember her by.
Bunkie, it is amazing that you have fought the dosage battle this long already. i wish you a better day tomorrow and continued strength and fewer side effect.
We are about to get that big cool down.DD#3 called me today and told me that she and DH will celebrate their anniversary over the week end. Then she told me they are taking charlotte (5) to Disney for her BDin Nov.; and they are meeting their close friends and kids there. I had expected to go with them but DD then asked me to make the trip to MA to babysit for Caroline (2) because they are not taking her. I was blindsided; I missed going with them last year when I got a bad cold ... I was feeling hurt but was at work so had to get over it. I gave up my summer, beach, vacation, and helped them 4 long week ends in a row with packing loading, driving their car (alone), to MA unloading, then driving back to MA again last week end...spoiling the kids. But I have to move on from here...I chose to help them and who they take to Disney is their business. But a little of me has been hardened and I will make sure I have my own plans. I am quite disappointed right now. I want to call DD#2 and ask if we can plan a trip to Disney with her kids.
Enough venting...I will work it out...no choice. As I always remind myself...this is a "first world" problem.
Brookside, I am hoping we can do the meetup...wish everyone could come.
Josie, was thinking...have you checked for a thread for your area where you may find some meet-up plans? Of course, you can NEVER leave this one...
Janis, hope you are feeling better.
Kate, enjoy your week "off"Off to bed...I think cardiologist tomorrow; have to explain why I stopped the statin...will get blood test and probably have to start all over. Work too...but no classes tomorrow.
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Joan I am sorry that you won't be going to Disney with your DD#3.
Runfree I am sorry that you are still so itchy
Sab, How was your first day?
I am so much looking forward to my second opinion urologist appointment Monday. I am praying that he thinks surgery is the right way to go. If not I will have to get a third opinion
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Runfree and Brookside!!!! Great news all around!
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Kate - I hope you get a good report also from that Dr. I don't blame you for getting a 3rd opinion. Thanks for the well wishes.
Joan, Josie & RunFree - Thanks so much for supporting me. It is not an easy thing to do. I met a girl today who has been struggling with this for several years and finally gave up and went back on the higher dose. We will see what the future holds for me. I just know I will not get the answer unless I do the suffering. Ugh!!
I went to my PCP today and she is giving me the referral to a rhumatoligist in this area. We will see how it turns out. She admitted to me that it is very hard to manage autoimmune diseases without steroids unless you take the chemo. Since my disease is not that acute right now that would be a waste of drugs and side affects. She said by the time a disease settles down in a remission state the steroids have changed the body so much you can not stop them. Gee thanks I appreciate that but where was that explanation years ago when they all stuck me on them. I am not mad at her just the way meds are pushed now so much with little thought to the outcome. So because I was so pissed I went to Cracker Barrel and had pancakes and turkey sausage with a ton of syrup. That was my excuse anyway.
It is cold here today about 58 and tonight we have a frost warning. Nothing like a heatwave and frost in the same week. Welcome fall.
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Bunkie, I agree with you. Lots of medications are being prescribed when a natural treatment might work as well without the awful side effects. You are so brave in working through this dosage reduction. You deserve a trip to Cracker Barrel now and again.
Joan I can relate so much to what you are going through with your DD. I have three kids, and I have had similar disappointments with all of them. Sometimes I think they fail to see us as individuals with needs of our own. I have grown tired of being seen only in the light of what I might be able to do to maketheir lives easier. I love my grand kids, but I don't always want to babysit. I can't imagine taking one kid to WDW and not the other. That would cause a lot of fuss in my daughter's family. Why can't you and their other child go along, and you can spend one on one time with her there? I'm sure you wouldn't mind getting your own room, if that is the concern.
WDW was the topic of discussion with my DD today. We usually go in October, but this year we can't because of my dad's situation and my grandson's ever so slowly healing leg. We will try to get down there some this winter. In fact I am looking for a winter rental. I don't want to do winter in the north, if I can avoid it. It was a tough day of First World decisions for us today. That helps put it into perspective.0 -
Bunkie, I am right with you on the pancakes and sausage! I definitely eat when I'm mad and feel sorry for myself or ill used by others, and that would probably be exactly what I'd get. It's good that you have the referral now--but yeah, it sure would have been nice to know the implications of long-term steroid use in time to get off them before your body got too dependent. Your focus and persistence have been so powerful. That OUGHT to be rewarded with prevailing over this problem.
Joan, that is so hard to take about the Disney trip. I'm sure you're right that the only solution is to stay as Zen as you can and keep your expectations low, but it must have been such a blow. This has been such a hard time.
SAB, how were your first two days in the new gig???!!! SO eager to hear about it....
My rash is still very itchy and it's spreading onto the backs of my legs and one arm. Very discouraging and alarming. So I am going back to the derm on Monday. Who wouldn't want to spend their 50th birthday driving 90 minutes each way for a 5-minute appointment to have a punch biopsy??? I felt as though I had to take the appointment, and that was the only time they had all week that wouldn't require me to miss any classes. I may be able to work in a dinner at a restaurant I really like that's somewhat near the doctor, though it's very complicated timing. In any case, the party tomorrow is ON. I may not be in the mood quite yet, but I will get in the mood by the time I've cleaned the house (to minimal standards!) and pulled some food together and assembled some dance music. I remembered a couple of long dresses that won't show my rash. I think it will work.
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Joan I'm sorry about your Disney world dilemma that's not very fair at all.I would never think of taking one child but not the other.When we went with the kids We even took a babysitter and really needed it because my Autistic son was kind of a handful at 5 yrs of age.We having been back since because of situations and economics.We were hoping to go this year but not going to happen.
Run free, have a nice birthday party.Try to forget about the itch for a few moments if you can.Happy early Birthday.
Kate have a good weekend and good luck Monday.
GIGIL, your thoughts of what our DD's think we are there for and how they treat us is so true it really hit home and I don't even have Grandkids yet.
I had a very stressful day . And didn't get all my phone calls done either.
I am really trying to decide how to work Monday.They are having a very quick ceremony for my friend at the cemetery on Monday at noon.I couldn't ask off for the whole day because there are so many appointments for Bone Density Monday.Maybe if they would just at me take a long lunch then I could have a chance to go.Not sure what to do I could call in sick but I don't ever call in and then I will feel guilty.What should I do?
Both my bosses were off today so I couldn't even ask them.0 -
Oh Josie, it would be meaningful for you to attend if possible. Can anyone cover the room for you so they don't get so far behind? What a dilemma...
Gigi, thanks for your words of wisdom. I cannot just take the little one and get a room...when she sees her mother she wants nothing to do with anyone else.
Our grown-up kids are a universal challenge, I think. We have "evolved" into a country of isolated families, little islands that often do not connect as in the past. I did not include my own mom in our activities but she would not have wanted to do the things I did. My sister-in-law and brother did reach out to her because they had so much more in common. But I was NOT a great daughter...5 kids was a lifetime of work for me. I wasn't there when she most needed me - the day she went to the hospital (alone) for the last time. I did spend the next 3 weeks with her and was with her when she passed, and kept a journal and it was very healing for me.
I hope that your dad is comfortable and I know you can't look too far ahead right now. How is Cole doing? And your grandaughter (Maya?) What a year your family has had. And you have played a very important role in all their lives.Bunkie, I went to my dr. appointment and nobody was there...I went to the wrong office and missed my appointment for the 2nd time. I then went and bought coffee and a bagel with cream cheese. I know how much better I felt after that...am with you.
The only person I know who has been on steroids for long term is my sister in law with rheumatoid arthritis. It has affected her but she has few choices.Kate, I am hoping you hear good options on Monday. Hugs and prayers...
For those who observe, I wish you God's blessings for Yom Kippur.SAB...I hope your first few days of work went well. Are you playing catchup now? Or has DH had you hiking and biking until you can't move? Enjoy the week end - they mean everything now!!!
Runfree, I wish you a wonderful party...wow, gonna be 50 years young...I was in grad school at that age with 5 kids and a grandkid...it was a wild time!
I do not understand at all why your rash is still spreading. I hope the biopsy will shed a clue. So sorry you have to spend your BD on the road...it is great that you will have this celebration ahead.Hugs to all...now will try to get back to sleep.
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Joan, I'm sorry for your disappointments. I have felt that way so many times with my girls...
A hug to brave bunkie, and one to GIGI who is a loving daughter. You are both inspirations.
Happy bday runfree.. I'm saying it now cuz I don't want to forget!! I hope your trip on Monday will be worth it. You must be exhausted from the discomfort.
Kate, hugs for Monday.
Work is very challenging, my boss is smart and hard driving and my student staff is amazing. I'm a lucky girl I think.
Yom Kippur but we are not marking it. When did I lose my faith I wonder.I don't miss it, but I do sort of miss the rituals.0 -
RunFree, HAPPY, happy happy! Enjoy this day sweet lady! You are allowed to have a day free of worry. Enjoy every minute! Hugs and Love to you.
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Good morning ladies. I hope everyone has a great weekend.
Josie, my sincere sympathy in the loss of your friend. Sometimes there are no words. Hugs.
RunFree, BIG happy birthday wishes! Put everything negative aside and have a wonderful day.
Joan.....I am so sorry about your DD cutting you out of the Disneyland trip. I know how much that stings. My family is so fractured and it can be heartbreaking. All I can do is send you big hugs and support. Much love to you my friend.
Sab, I hope the past two days have been good ones. I hope you love your new position.
Bunkie, I feel so badly you have to struggle so much. Living with a chronic illness is difficult and depressing. I know it is hard, but you are a determined woman. You have been through so much but you have not let the negative events of your life destroy your spirit. Your life will improve, i feel it. Hugs!
Gigil it is so good to see you posting more often. I hope you find a gentle place to winter!
Kate, I hope you have a good weekend and good results from the urologist on Monday.
Brookside....Sew...I know i forget people when I post like this. I try so hard to remember what is up with everyone. You too are in my thoughts always.
Have a great weekend my friends. Much love to all.
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Janis, WOW, THANK YOU!!! That's the most beautiful cake I've had since my wedding! I LOVE IT!!!!
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Runfree I am sorry that you are still so itchy. Happy Birthday!'
Josie I hope you can attend your friend's funeral
I found out about a drug that is used in clinical trials for melanomas, lung and bladder cancer. It is called Anti PD-1, by Merck. There have been good results and it does not have the side effects of hair loss, nausea, constipation etc. I have defintely decided that I will not do more chemo. I am hoping for surgery and possibly this new drug. I have an appointment with my MO Friday, and I will ask if I qualify for this drug
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RunFree, you are very welcome! You have had a rough time lately and I wanted to find the perfect cake for you. I saw this and knew I had picked the right one. Enjoy your day and save a slice of cake for me.
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RunFree - Happy pre-birthday party time! Enjoy the fun activities flash the legs and bring the 50s in with much hoopla! Ooo who
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RunFree - HAPPY BIRTHDAY!!!!! Hope you are having a good one. Party party party. You can worry about the rash another day. I wish that thing would take a hike but they do take time. I have no patience for that type of thing but I had to do the same thing when I had one. Just use the calamine and wait.
Kate - I hope you can get the surgery. That would be great and the possibility of the new drug too.
Janis - Thanks for the well wishes. We call my disease chronic and hidden. I go to the Dr so much and they all look at me like I have 3 heads. You look great...no I don't. When I first got diagnosed they told me I was a hypochondriac. One of the managers I used to work with told all my employees I was faking it. When they did my lung biopsy and found the Sarcoid she shut up. My spirits are usually up but lately I am feeling that depression creep back in. I was crying at some dumb commercial the other day. Time for another appt with my shrink. She can usually pull me out of it.
Joan - They thought I had RA when I was younger. I had swollen joints back when I was 25. The Dr here said she thought I was getting it. Then I moved to Cali and it all cleared up. Dry weather does help. If your SIL has it then you know about steroids. I am still praying I can get off. Does not look good but I am holding steady.
Josie - Sorry again about your friend. Could you just go for a couple hours and then come back? Maybe your bosses would understand that. If you really want to go I hope you get to.
SAB and RMlulu - Have a great week end.
Woke up this morning at 4am. Yes I did. There was this awful smell in my bedroom and it woke me up. My nose was running and my eyes were all sore...skunk outside my bedroom again. I think he and that neighbors kitty are liking my house a little too much.The other night before I went to bed there was a possum trying to get in my backyard. What do I have back there they all want????? The kitty wants my birds that hang out in my yard waiting for bread and my squirrels want nuts. Pepe my semi wild pet squirrel follows me around the yard till he gets his treat. I do not put out much in the summer but usually during the winter. It is like a scene from animal planet. I told my neighbor I am the only one on the block with allergies to dogs, wildlife and cats and they all come to my place. I am an animal lover for sure just can not have them in my house anymore.
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Bunkie it sounds like you do attract the critters.Maybe it's something in your yard or the trees you have.Maybe there might be some natural deterrent that might keep them at bay.
Thanks for the nice comments and thoughts about my situation.I kind of already told my 10yr old that she wouldn't have to go to school Monday so she could attend the funeral.So now I have to figure out how she would get to the funeral if she didn't go to school and I just went to work and tried to leave work for the funeral.I'll figure it out somehow.
Kate I hope you can find a better treatment for your cancer.Maybe it's some sort of miracle drug or maybe it's not.Be careful what your signing up for you don't want to be a human guinea pig.0 -
BTW Bunkie I hope you can get that smell out of your bedroom from the skunk.That's awful.
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Bunkie, of course they love your yard - you feed them
There is a natural repellent - I use it for the deer (we have a herd of about 9 in the neighborhood)...it works. Otherwise they would defoliate the yard in winter.Yes, Bunkie, I've seen what long term steroids can do. With RA, there aren't a lot of choices.
Well, I had a fire in my oven today and it set off the smoke detector and filled the house with smoke...charred the oven and scared the heck out of me. It took about 8 hours to air out the house. I had a moment of 'should I call the fire department'? I was on the phone with DS from Chicago - he is visiting in NY and I will see him tomorrow...at my grandson's 10th birthday. More ferry-ing and driving...but it will be worth it.
Off to sleep....
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Joan that is awful I'm glad everyone is ok.Did it ruin the oven? Do you have an electric oven? My MIL used to always catch the pot holders on fire as she was pulling something out of the oven.How did it happen?Have fun at your GS birthday.
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