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Falling down and apart

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hello Dearhearts

I am really having a hard time. Both physically and mentally. I still have not received the transfusions. I will be typed and crossed tomorrow after my onc appointment. It seems that I am always having the miscommunications between docs. It took till today for the onc to return the calls to the pcp. He started calling her on Friday! So more delays for me. I know that I am not in a critacal state but I sure do feel real close.

I am having such a hard time with the swelling and breathing. And to make things worse, I feel down a few steps today. I don't know if I lost my balance or just slipped but now I hurt in places that did not hurt before. And I am turning all shades of black and blue.
So the result of falling and being so so tired and feeling frustrated is, having a major meltdown.
I just feel done with all this. I don't want to do any more. i really hate feeling this way but it is how I am feeling right now. I told hubby that I was not going tomorrow(today) to the onc appointment. What's the point in going. it feels like she can't and won't do anything. I know that I will go, but I would rather just climb into bed and stay there. I spent the rest of the day, after falling, sleeping. Slept till 8 pm.

I know that so many of you are going through so much more than me, I just feel so weak and without the fight.

Hugs to all of you
Lisha

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hey Lisha, I know how you are feeling, the easy thing to do, is to stop trying, but keep thinking not just of yourself, but your family..... how much they want you to get better... I know you are just venting and thats a good thing. What really sucks is that you have to want to do this.... no one else. I truly believe that you have to do what ever it takes to get well again. Keep you head and spirits up, don't let this disease take that from you too..... Always praying for you... Vinny

jimwins's picture
jimwins
Posts: 2066
Joined: Aug 2011

Lisha, meltdowns are always allowed here. I also agree with Vinny.

I'm so sorry you're having to deal with falling and the swelling and breathing issues on top of everything else. You've said really good things about your PCP in the past - maybe his office can take the ball on resolving the communication issues with your oncologist?
I'm sure he (PCP) is as angry/frustrated as you are.

I'm not a doctor but the breathing issues could be related to the fluid build up
you're experiencing. Maybe some things you can do to help with this is to maintain
a low sodium diet and limit fluid intake (if you're not already). As convenient as many processed/prepared foods are, sodium "hides" in abundance in many of these. You can limit sodium greatly by reading food labels and avoiding high sodium content products and not adding/using salt when cooking There are some good salt substitutes our there. Also, a doctor I had in Houston years ago told me he started using lemon juice as a substitute for salt and that worked for him. You should check with your medical team on all of this. I'm sharing what I learned from working with a team of nurses years ago. Also, tell your doctor(s) about your fall - that's something they need to know.

Have they put you on any diuretics (Lasix, or similar)?

Lisha, I understand your frustration. Share this with your oncologist today and you
don't exactly have to be "nice" about it ;).

Hugs from your friend in the south,

Jim

onlytoday's picture
onlytoday
Posts: 593
Joined: Jun 2010

Lisha,

I get it- you are sad, mad, tired, hurting...you name it and you're probably feeling it. And it's all justified! But here's the thing... A lot of people truly truly care about you and love you and need you. So as you think it through and figure out what is right for you remember that. Sometimes it all seems like a mountain that you can't possibly climb- but you can. It's just a process that takes time and patience.

Since I started this journey I really have found that patience and flexibility are the two things I have to work on! The docs don't always move as quickly as we want and then just when we think we know what's going on they change the game plan!!!! It's enough to make you crazy!!

I continue to always pray for you. Meltdowns and venting are so healthy! Give yourself a break- it's okay to feel the way you're feeling.

Hugs,
Donna

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Lisha,
I busted my butt to get on here this morning. It kept saying access denied,but I finally got on. I kept trying just to respond to your post. If I can't get this to post I will keep trying until it does!!!!......NEVER give up even though sometimes its feels like,"Whats the use anymore". I think those thoughts have gone thru everybodys head about something in life. This is just another bump in the road to get thru. I know this bump is a higher one with you feeling the way you do. You feel like everything is against you when you feel depressed. That leads to all the meltdowns and despair. You have to hang in there and know things will get better. I agree with what all the others have said so I won't repeat all that.Just never forget we are always here to back you and always will be. Don't forget your famous words,"Peaceful Healing". Well that applies to you as well. John

allmost60's picture
allmost60
Posts: 3172
Joined: Jul 2010

Hi Lisha,
There's not much I can add to whats already been said, except to say that I have faith in you to continue the fight to the best of your ability. If that means you melt down every other day, then so be it. There is no easy way to get through the hard difficult times you are going through, but I hope you find comfort knowing you have a wonderful collection of friends that will always be here for you. When I get tired and worn out I have a tendency to stumble and be off balance. I tell myself..."go sit down...relax". We want so bad to feel better that we forget the "time" involved in getting to that place. Be patient with yourself and remember that you are still weak from not eating as much as needed to keep your strength up. You are mentally exhausted which will also affect your physical abilities, so don't push yourself. You will make it through this my friend...I have no doubt. If you need to talk, just call..I'll be here. Love you...Sue

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Good Morning Vinny, Jim, Donna, John and Sue,

I am awake after a restful night. Turned on my computer and there you all were!
My core support!

Thank you for giving me a boost of support or a kick in the rear or how ever you see it. I need it.

Yesterday was just such a lousy day. I think I can handle one difficult thing at a time. but more than that, the falling the new pain the frustration is just too much for this girl to handle...

I will go to my onc this afternoon and I promise to let you know when I return home.

I so very much appreciate your words to me. This is hard and I am trying to hang in there. I still really want to go to my granddaughters football game on friday night. I posted a picture of her on my expression page. How can I possibly miss seeing that cutie doing her cheerleading!

I told hubby that I will hang onto the bannister with both hands, and try to use the stairs as little as possible. I think the fall was because I am so light headed and my swollen feet don't bend very well. Bad combination.

Jim, I am eating so little these days so no need to worry about salt. I also have a low salt intake just for my normal diet. I don't like salt. I was told that I need to drink more, since I am dehydrated. It's just so hard when I have no desire to eat and drink.
One of the reasons I will be staying over in the hospital is because of reactions to the transfusions. I will get pre treatment drugs before each unit and Lasix after each unit. The docs are talking about giving me three units. It depends on how high my hct level gets.

Thank you all for understanding and for always being there for me. I hate having meltdowns, but it is out of my control. I just have no more strength in me to keep it together.

Huge hugs to all of you. Can you see me, I am smiling because you are all so wonderful..
Lisha

jimwins's picture
jimwins
Posts: 2066
Joined: Aug 2011

Hi Lisha,

You sound in better spirits and I'm glad :).

I hope you can make it to Ella's game on Friday - just be extra careful.
If not, hopefully someone can video the star cheerleader for you :).
You know you got a whole gang of cheerleaders here! Can't you just see
John in a cheerleader's outfit with pig tails? ;) Also, thanks for bringing
him out from hiding - we've missed him.

I pray you get a break soon and this all gets resolved.
I can feel your smile....

Hugs back to you.

Jim

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I look more complete with the pom-poms John

po18guy
Posts: 241
Joined: Nov 2011

Just went up on your behalf. I know that there are days like this, but each day only lasts one day. Stick with it and things will begin to turn - they have to! You know, the haven of your bed is not an entirely unreasonable place to spend time. Sometimes, your battery needs a recharge and detaching from the world for a bit is the only way to accomplish it.

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