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Hi Lea, You mentioned something the other day that very much resonated with me. You said, "In our society, we are taught to plaster a smile on everything 24/7. Anything else creates discomfort for OTHERS. And oh no......we can't have that." - Without making this about me, I just wanted to say that I can truly relate to that regarding the tough challenges that I'm dealing with in my own life right now, and I, too, have had to suppress myself from even showing emotion to friends and family because they're used to my free spirit and cheerfulness. I have experienced their seeing me otherwise is uncomfortable for them - it becomes more about them. It's like adding insult to injury to me ...so, I've suppressed it all and it's a very empty feeling having to do so. I just wanted to say that you expressed that thought so eloquently, and I really understand it. And for me, it can make a person feel even more alone.

Firstly, my wish for you is for a full healing and recovery and continued strength...and in the interim, you really deserve to be able to express yourself freely without having to hold back or justify yourself to family or anyone - I hope you receive that! 
- sending love and wishing you a peaceful weekend ~
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LL, good morning! Thinking of you. How's it going? Continuing to pray and being expectant of God's mercies. (((hug)))
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Looking for my 3 tiny things to be grateful for today.

That first bite of warm toast, having an afternoon off to watch an old b&w movie, climbing into my comfy bed with an extra wooly winter blanket at the end of the day.

Lea, I so hope you are doing OK today. Maybe you have 3 tiny sparks of joy too. I hope so. Many hugs.
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Lea: Just checking on you. Hope that you're resting.
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Checking on you on Friday afternoon!
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How are you feeling today, Lea? Sending many hugs your way.
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Hope today is better than the past few have been. Reading about the mom who donated her son's organs, makes you believe that there are angels here on Earth.
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(((((Lea))))) - that letter was amazing. God provides what we need when we most need it. Blessings on all of you!
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Lea: What a treasure the donor's letter is!
Sorry that you have a splitting headache. Hope it's gone soon.
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LL, the donor's letter. Just reading about it made *me* cry fps... What a much needed "pick-me-up" straight from heaven.
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Geaton, my DD the RN insisted on the Scopolamine patch bc she has a friend with BPPV who's gotten relief from it. Too bad I don't have BPPV.
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Oh, letter was such a gift!

May God send peace and comfort to that mom.

Thinking of you, today. May God send relief from all of these crazy side effects.

You are treasured, here.
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Lea,

I would have been crying reading a letter from the donor’s mom.

It’s so beautiful for Chuck to be able to read moving words from this mother about her precious first born son.

I wish more people would understand the need for organ donations.

Thank you for sharing this heart warming news. I know it will inspire others to consider donations.

Sadly, we take so much of life for granted.

Often times, we learn the most from people who have been through the darkest days of their lives and somehow they manage to be compassionate towards others in need.
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😭🥰
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Just in case I haven't cried enough lately, Chuck received the most beautiful letter from the liver donor's family in the mail, forwarded by the Mayo Clinic.

The donor was a fourteen year old boy who was his moms first born child. One of 3 siblings. Full of love and light and spunk. His young life was taken way too soon but his mother was so happy to hear that his liver was used to save Chucks life. I've not seen him cry the way he did when he read that shocking news. Who ever expects to hear such a thing?

J's mom gave us her contact info so we can stay in touch. It was a blessing to get this letter, and to hear from her in such a positive way.

Donate Life.
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LL, oh thank goodness it wasn’t the Dorktor who suggested Meclazine. Who suggested the scopolamine patch? I’m sorry it did nothing (except give you a bad headache) but I personally am not surprised it wasn’t at all helpful. I think to just be able to say you’ve literally “tried everything” for the dizziness has some “value” in this situation.
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Lea,

Gosh, headaches and dizziness together…

I’m so sorry.

Sending lots of hugs and saying prayers for relief soon.
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((((Hugs)))), Lea. Taper, taper, taper.

Love you, b
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Geaton.....Dorkter C did not suggest Meclizine, thankfully.....it was the palliative care buffoon who works with the social worker buffoon who did not seem to understand I've seen teams of specialists since early March about all this! If Meclizine wasn't tried at the very beginning, there'd be some serious incompetence going on! Its like saying gee, have you tried Tylenol for a chronic 4+ month headache? Gee no! Nobody ever thought of that! 🙄 Chuck could use the Paxil, I agree, along w a good swift kick in his arse......hes so far in denial it's insane! He's quite pleased with himself for "saving my life" which would be funny if it wasn't such a stupid statement! I wasn't suicidal to begin with, and if I was, what's changed? Nothing. Duh. My statement to him was only that I can't live like this forever, there is no QOL in this condition, etc. Not that I was planning my demise. If he took a moment to LISTEN to me instead of put words in my mouth or "read between the lines", he'd hear me say I want to be steroid free for at least a month to see how I feel and reevaluate things then.

When I told him I wanted a Cold Stone cake bc this might be my last birthday, he said it wasn't WHAT I said but HOW I said it that led him to think I was planning my demise. Really? 🙄

Nhwm, there is nothing to forgive. It's important to me that people understand where I'm coming from with all this. That I don't feel antidepressants will fix this situation for me. But I'm willing to try them to see bc it's important to my loved ones. Yes, they are strongarming me......but IF Paxil will help, I'm willing to try. Ty for being so supportive of me since day one xoxoxoxo.

I put on the Scopolamine patch this morning and immediately got a splitting headache. No improvement in dizziness, naturally. Ugh. But then again, I wasn't expecting an improvement. It lasts 3 days but I'll likely remove it tonight if I notice no difference.
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Good morning Lealonnie from smokey Northern Illinois. (Those Canadian fires can stop anytime now!)

I am so hoping today will be a better day for you. The past few days have sounded pretty rough. Prayers everyday day for you pretty lady ❤️
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LL, maybe it's Chuck who needs the Paxil? I'm not saying this cynically. Is he currently on anything? If he's anything like my hubs, the daily/hourly stress of watching helplessly as your LO suffers with seemingly no solutions or end in sight can take a toll on anyone -- regardless if he's experienced some of it himself.

Then the Meclazine suggestion from Dorktor C... I have no words.

Thinking of both of you this morning... xoxo
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Lea, forget slapping Dr. C. Drop kick her/him. Maybe eat your Cold Stone cake. The whole thing. Then take some x lax and poop all over his desk. Heck, I could think of all sorts of fun ways to get rid of some frustration.

But seriously, I'm sorry that your Chuck doesn't get it. Or maybe he does and he's just being a man. Remember men need to fix things. I guess he thought he was fixing something by suggesting psychiatry. My DH is the same way.

Don't take the Paxil if you don't want to. I wouldn't take anything to placate someone. If you've decided it may help, then yes. But I wouldn't let someone strongarm you into taking another pill with more possible side effects. Mind you, I'm guessing nobody could strongarm you.

I get so frustrated on your behalf Lea. Still praying.........
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Lea, so sorry for your ordeal. That social worker sounds like a jerk. I hope your dizziness subsides soon and your life improves. My prayers for you continue. Take care.
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(((((Lea)))) I have personally seen three times when a spouse/LO couldn't face reality. It was denial and avoidance. I know there are many more - this was just my personal experience

One was the iInability of an husband to hear his very ill wife talk openly about her symptoms and illness.

I think it is not rare which is unfortunate.

I know that knowing that doesn't make it any easier for you at the time you are going through it. Maybe later.

That SW definitely deserves a smack. It's absolutely horrible denying you the right to be angry about your disease and all the cr*p that followed, blaming the steroids...

And denying you the right to be angry at your dh and dd going behind your back. For me it is the going behind the back which would bother me the most. It feels to me like taking away your personhood - objectifying you.

As for Dr C - incompetence!!!

How dare they!!! You deserve much better than that.
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Lea: One would think that Chuck would be more able to understand as he's been through a lot.
Hugs to you.
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Lea, I see. Thanks for clarifying.

I can understand why you feel as you do. You’re a realist. It’s one of the things that I most admire about you.

I suppose that it’s difficult for your family at times. In their own way they are looking for a way to navigate through the aftermath of your cancer treatments.

You have been through so much. I can’t imagine what you’re going through, both physically and emotionally. So, if I occasionally fumble, misunderstand something or say something incorrectly, please forgive me.

You have been so brave right from the start of learning of your cancer.

Anyone going through something this extreme is going to have their moments of grief and frustration.

You’re entitled to all of your emotions. I hope Chuck will realize this.
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Nhwm......I don't "wish to take something to help." What I said was, "I've had good experience with Paxil in the past sp, so we'll see. Not that some Happy Pill will fix this mess, hardly. It's more an effort to pacify those who cannot cope than it is to help ME. In our society, we are taught to plaster a smile on everything 24/7. Anything else creates discomfort for OTHERS. And oh no......we can't have that." My family forced me into a corner yesterday, and I've AGREED to take something I don't believe will help me fix this situation at ALL. "I'll be a good little guinea pig."

RD, I hope the fiasco w the airlines doesn't put too big a damper on your kids/grandkids trip. Happy early Birthday to you.

Guestshop, ty. 😁 I know dh loves me and blah blah, but he's right at the top of my chit list at the moment, Grrrrr. He sux at being both a patient AND a CG these days 🙄

Golden, this sw was busy saying "I hear how angry you are, and you have that right..."...(gee thanks sweetie) but then questioning where the anger was coming from? The steroids, could THAT be It? Surely it cant be the disease and the complications from the treatment and the fact your dh and dd just blindsided you in front of all of us? Nah.
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Just love ya Lea. Some folks are great at being the patient and suck at being a caregiver.
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I am so sorry Lea. From your post I sense that Chuck is likely very scared and is grasping at something to hold onto or find help. I certainly understand your point of view and how exhausting this is for you and an inept SW is no help at all. I hope tomorrow brings a better day and you have the cake of your dreams. I love cake and ice cream. My birthday is at the end of this month. We hopefully will have just returned from Utah after babysitting two grandchildren.

My older daughter was due to arrive here tomorrow afternoon but she is in the unfortunate group of having her flight canceled so she is flying to Savannah and renting a car. Her 9 and 7 year old girls are helpful with their 9 month old baby brother but it's alot. Her husband is coming a few days later due to work.

I continue to be impressed with how able you are to advise others while feeling ill. That is a unique quality. Just hope something better finds its way to you all.
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