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Lealonnie I am so sorry, I can only imagine how disheartening this must be.
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Lea,

I can’t imagine how hard this must be for you. Lady, you have been through hell and back with your cancer and so many other complications. My heart truly goes out to you!

I certainly hope that 2024 will be a turning point in your life. As always, I wish you peace as you continue on in this challenging journey.

Sending a bazillion hugs your way!
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Well crap Lealonnie. We were all excited to hear that you were once again getting out doing things you enjoyed and seemed to be doing some better, and now to hear that you've taken some steps backwards is disheartening to say the least.
And don't get me started on the runaround you're getting with your eye issue. I know you're beyond frustrated as are we all on here for you, as we care about you and want only Gods best for you.
While I do pray for you and your healing every day, I feel like I need to kick it up a notch and I will, and I'm believing others on here will join me in praying with fervor for your total and complete healing once and for all as this has gone on way too long already.
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Lea,
Sorry for the step backwards. I truly hope you are able to feel up to spending holiday time with your family . (((Hugs)))
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Lea, I'm mad on your behalf. Your frustration is coming through loud and clear and I don't blame you.

I don't even know what to say anymore except I'll pray and pray and pray for you even harder.

(((Lea)))
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Lea that sucks. It seems like whenever you are making good progress something else happens. Life it seems kicks us in the a** and keeps on kicking.

You are an inspiration to me because you keep fighting against all these issues that come up. And you dont sugar coat any of what you are going through.

I wish I could give you some of my life force so you could beat these side effects from the immunotherapy.
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Lea: I'm so sorry to read this. That was unacceptable, to say the least, about the doctor. Hugs.💛
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Lea, I'm so sorry you are having to deal with these symtoms & this setback. I hear your fighting spirit & applaud you. Best wishes being sent to you 🤗
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Thanks everyone. I appreciate the extra prayers and you all just letting me vent.

Sp, you and I are of the same mindset: you can sugar coat a turd but it's still a turd. As a New Yorker born and bred, I sugar coat NOTHING. 😁 I wish you could give me some of your life force too, I could use some more piss & vinegar these days.

Way, oh I WILL spend time with my family this Christmas if I have to crawl into the family room on all fours. We're making Fra Diavolo with fish on Christmas Eve bc DDs fiance the cop is working and she'll be alone. Chuck will cook of course, but hes happy to do it.

NHWM, every year I say I hope the new year will be better, and every year (since 2019) has been markedly worse. This year I'm saying NOTHING so I don't jinx things even more 😁 I'll be grateful to make it to 2024 and then to my DDs wedding on Nov 4. She's getting my hair and makeup done so I hope my eyes are cleared up so my pure WHITE eyelashes can be mascara-ed up for once. My hairdresser was saying "oh you poor thing" about my lashes and brows and I laughed to myself.....honey, those are the LEAST of my problems, if you only knew.

DD the RN called last night and thinks Dr C was mistaken to cut the IVIG dose in half and that's what my body is responding to. If I never hear those initials IVIG AGAIN it'll be a day too soon. Potions and guesswork and "stabbing in the dark" is ENOUGH already. She also said she and her fiance are coming over to help Chuck put up the giant Christmas tree and ton of ornaments this year! Thank God for family.
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Lea,

I don’t blame you one bit for not sugar coating anything. I despise a ‘Pollyanna’ attitude.

I agree with you about not caring what color your eyelashes are at this point.
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Girl, we will just keep praying you through to next November and the wedding. We all sooooo want you to be there.

May God grant this request.

And give you relief.

And those dang docs some WISDOM, already.

Big, but gentle hugs to you.
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Ack, Lea. Checked in to read about your latest adventures and saw that you aren't doing as well. I'm so sorry for all you have been through. That's really awful about not seeing an opthalmologist when that's who you thought you were seeing. I hope they get you in quickly. I hope you bounce back over the next three weeks and can enjoy your family.
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Just so sorry Lea. Can only hope the difficult symptoms abate sooner for you.
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Lea, your current update/situation sucks big time. Praying for an abatement of your symptoms really soon.
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Lea, Keeping a good thought that the head and eye issues clear up. Cannot BELIEVE that you were sent to an optometrist instead of an ophthalmologist. What the actual, eff, is that about? Let's hope you get in quicker to the ophthalmologist--waiting till February is nuts.
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Back with an update: I'm finally feeling better from the crippling dizziness the IVIG caused me, 3 weeks later. My eyes are only a little improved using 2 drops a day. Today is 2 weeks since I saw the optometrist and got the referral to the Opthamologist. Was told I'd hear back from their office w/i 2 weeks but no word so far. Same thing happened with the palliative care team who ignored my request for a Paxil refill sent on 12/13. So I was going to run out and couldn't even get thru to their number! I called Dr Cs nurse and she spent the day yesterday trying to get in touch with someone from the palliative care team to call in my Rx. It came thru today so it can be picked up tomorrow. I guess there are no doctors available during Christmas so please DO NOT GET SICK OR NEED HELP IN ANY WAY 😑

We're having my DD and her fiance over on Sunday for Fra Diavolo (shellfish with spaghetti in spicy spaghetti sauce). Then the family on Christmas Day afternoon for chicken cacciatore in the crockpot I can throw together easy peasy. All the decorations are up and now the gifts need wrapping.

What's everyone's plans for the holidays?
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So glad you're getting some relief from the dizziness, fingers crossed you continue to feel better!
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So happy to hear that you’re feeling a bit better, Lea. You’re always in my thoughts.
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Lea, I'm happy for you that your dizziness has subsided. I sure hope it sticks this time. Still praying........

We are going to sis's this year for Christmas. It will be first time getting together with fam since before covid. My family brings up a lot of bad feelings for me so I am approaching this with great trepidation. I'm only going cause I think it's the right thing to do. Facing my fears and all that psycho babble. I hope I'm not making a mistake. We shall see.

I've always wondered when I feel a certain kind of way around certain people is it their fault or weakness on my part? A bit of both I'd wager. Anyway............

Happy for you Lea!
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Gershun, I dont believe its a sign of weakness on your part to feel a certain way in front of family. I was just telling Chuck the other night how TWO people in my entire life have been known to bring out THE WORST in me. My mother and my ex husband. And for good reason, NOT for nuthin or bc I'm weak. And there are some people who bring out the BEST in me, like Chuck and my bff since 4th grade. Just is what it is. My ex is as toxic and mentally ill as it gets, who refused to acknowledge it and lost EVERYTHING good in his life as a result. And my mother was a mentally ill person who refused to acknowledge it her whole life also, and what her behavior was doing to her family and her little girl. I'm not saying I'm a saint or anything like that, but I AM saying that THEIR behavior is what caused ME to feel stressed out in their presence all the time. And rightly so. So I divorced the old man and kept limited contact with my mother, and firm boundaries as well.

If you go to Christmas and feel upset at all, put Plan B into action and vamoose OUT of there with a headache or the symptom nobody ever wants details on: diarrhea 🤣😂😁

Thank you NHWM and cwillie 😍
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Thx Lea, I think you are probably right.

This has been a long standing thing. Since childhood actually. I never put two and two together until I became an adult. I always thought it was my own insecurities at play and there is that. But since I don't feel this way around everybody then there is that too.

Not to go on too much but I've always thought my family were mean spirited. I always feel scrutinized around them. Never a pleasant feeling. I plan on dressing casual, minimal makeup and they can accept me as I am. In the past I always panicked cause my sis is really high on appearances. But I'd rather err on the side of looking neat and clean. Not looking like I don't give a sh*t but also not looking like I care too much. Ya know what I mean.
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So glad you are feeling better,
enjoy your Christmas Lea!!
Our son and his wife and DD and her fiance are coming with cat and dog in tow .
Turkey and trimmings since we weren’t altogether Thanksgiving this year .
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Lea, I SO glad the dizziness is starting to abate! Good thoughts for continued improvement.

Gershun, this is your family that makes fun of your being "sensitive"?

Can you go and pretend you're "an anthropologist on Mars"? (That's a quote from an Oliver Sacks piece on Temple Grandin)

Don't engage; watch, take in their behavior towards each other and you. You might get some insight.
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Yes Barb, I'll watch and learn. I'll be like that nerd guy from The Big Bang Theory. You know that show? Although he was a bit of a know it all wasn't he? Ah well.........

Honestly though, I've always felt like my family don't talk to each other. More like at each other. Like I said, it's been a few years now. We're all getting older. My glam sister is getting long in the tooth, as am I. Maybe she's mellowed. I'll try to go into the evening not expecting the worst but I won't hope for the best either cause that's where I always get myself into trouble, and end up depressed for days afterward.

Watch and learn. I'll think of you Barb while I'm doing so. :)
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Probably pop an ativan before I get there too.

Just saying............
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Gershun .
Your family sounds like mine . I don’t do holidays with 3 out of 4 siblings . We for the most part went our seperate ways since my parents both died .
Anyway , I resorted to playing the wall flower most of the time , or busied myself in the kitchen if the holidays were at my house, which was most of the time ( to please my mother ).
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Misery I'm sure there are lots of families like mine. In fact sadly, it's probably the norm.
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Gershun,
Mine was due to my mother pitting one child against the other . And some of my siblings are very competitive as well , comparing our children etc. I would never play those games. I never cared what they did . It bothered them that I did not envy them .
I guess it is pretty common for some competitiveness in families. I don’t get it really . I don’t see the point in trying to put another person down. I don’t understand why that makes them feel better .
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My mother was exactly like that Gershun....ALL about appearances where I never measured up. I remember one time when I moved into a brand new house in Colo and the folks were coming to visit shortly after we'd moved in. I'd been very sick in Florida and hospitalized which was what necessitated the move back to the dry Colo climate in the first place. Mom was an extreme OCD clean freak....nothing was ever clean enough for her. So I was on my hands and knees cleaning a BRAND NEW bathroom for their arrival, knowing she'd be recleaning everything, leaving me feeling inadequate as usual...and I had a full blown panic attack! Omg I though I was dying because I didn't know what was happening. I was around 33 @ the time.

This is ONE reason out of 1000 I always felt under extreme pressure during family functions, and hated them. And knowing no matter how good I looked, it wasn't quite good enough or thin enough for my mother.
🙄 I'm truly glad I no longer feel compelled to clean like a maniac or dress up and do my hair and face like a glamour queen or "hold my stomach in" as I was taught since 5 years old. Those days are over and now what you see is what you get. I'm just grateful to have made it to SEE Christmas this year!
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Mine too, Way. My sisters are twins. I don’t think they are identical but when I told my mother that I thought they were fraternal twins she had an absolute fit. It was as though I robbed her of s trophy of some sort. They are total opposites. They no longer speak to each other. They refuse to be in the same room. I think in large part this is because my mother spent a lot of time comparing them and one sister always came up short. We spent most of our childhoods trying to stay out of our mothers crosshairs sad to say.

After this nightmare with our parents is over don’t think any of us will be keeping in touch. We’ve moved on.
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