Ugh Things Not Going Well

Oh, no!!! You were left in a building with the fire alarm blaring!

So sorry to hear about your friend's passing as well.

Hoping that the afternoon will get better shortly.

Prayers and hugs sweetie for you & your friend's family & friends.

So sorry you are going thru even more c?@p..

Take care &, if you start feeling bad, please don't wait- get yourself to hospital

Omg Barbara! What next? You've got to be exhausted! And they left you? Oh wait, that's protocol sweety in most hospitals, they evacuate ambulatory patients first then chairs and so forth.

Doesn't help alleviate your scare I'm sure.

I hope the echoes ok and they figure out this issue quickly. Will keep you in my prayers and thoughts.

Barbara I hope that you sleep well, and you have a much better day tomorrow! I keep you in my prayers! I do hope and pray things start getting better for you soon!

White Beard

Hi Barbara,

I'm sorry to read what happened. I'm sorry about your friend as well.

You BP was really high. I hope it decreases so you're okay. The docs seems very kind to use their coats to try to keep the cast dry. It was nice of them indeed.
I hope the echo results are okay. Keep us updated when you get them.

Hope you can get some rest tonight. Keeping you in my thoughts. Update us when you can.

UA

I wish that something could go your way-I'm so sorry.

I, too, worry about the future as my illness progresses. I try really hard not to, and focus on today, but it's impossible not to.

I hope today is a better day. Please check in and let us know how you are doing. You've offered me so much support-I wish there was more I could do.

Hi Barbara, sorry to see your not feeling any better yet.

Your B/P is most likely up due to your increasing anxiety sweety! Letting your thoughts take you into dark places is not good.

I think right now your letting your fear of the unknown get the better of you. I dont want to put you on the spot so please feel free to not answer if my questions make you uncomfortable.

Are you on oxygen at home?, are you under the care of respitory therapy? Have you seen a hematology oncologist?, what are they doing for your LLG?, have you refused treatment for it?,

You've not mentioned any of those things and they're all very important aspects of leukemia.

Many times when we're already suffering dx that are chronic and we lose someone we know we tend to dwell on our own mortality. We literally scare ourselves senseless. We turn their demise into our own. It ultimately makes us aware of every breath we take and since breathing is an involuntary occurrence, thinking about doing it disrupts the process. In turn making it feel as though we are not getting enough oxygen.

The anxiety complicates this even more by raising your blood pressure. Im seeing those signs here Barbara. Im not in anyway diminishing your health status or your symptoms, they're very real and very scary. What I'm "hearing " is you in panic mode and you're losing the fight with rationale. Its never bothered you to be alone, you've been to tons of appointments without your husband, you've had pulmonary problems for years as well, and you hate being in the hospital and can't wait to get home! Its not like you to want them to admit you.

I know you have a therapist and I urge you to get in there and be honest with everything your feeling. Believe me she's heard it all before and its common for anxieties to come on us when in the face of mortality thoughts.

Its possible she can give you something to help when those feelings become overwhelming. Maybe just putting them into words will put them into perspective.

No matter what you've got to get a handle on this so you can get back in the battle. You've got a daughter that expects you to be sitting out there when she graduates!

I also consider myself a friend of Barbara and have spent time off forum talking in length with her. She also knows where and why I'm blindsiding her to repeat questions she's answered in previous posts. Im as concerned for her as much if not more than anyone else simply because I know the battle shes fighting.

I asked her what she's doing now? Not what she's done but now! Is respitory therapy doing home visiting?, she talks of fighting the 02 the EMTs were trying to use? Doesn't she use it at home?

Does hematology know she feels as is she's worse? Hs she gotten in to see them since she's worsened? Has she opted out of treatment? Now?

All these things are valid questions and she has questions and until all the pictures on the canvas no one especially me can offer the kind of help she's seeking. The answers to those questions make the answers and advice we offer different.

I think I said right outta the gate she didnt have to answer anything. She can always just say pray for me and leave it at that.

She knows she can email me as she's done in the past if that's what she wants.

Barbara I'm not excluding you from this conversation, I've gotten inquiries off forum about some of these very things. There are alot of people concerned about you and justifiably so. I asked the questions here because I thought it might help those concerned understand a little better.

You may post more in lupus I dont know, everyone doesn't go over there to read. Neither do I.

Still stands that you dont have to offer anything to anyone here just know that folks are worried about you.

Sorry that you saw this as any situation you needed to be defensive about.

Vickie, Lynnwood, and Lexi;

Thanks to you all for your posts. Lynnwood you know I love for sticking up for me. We've shared many heartaches and fears over the past 8 years and I appreciate it that I matter that much to you and I thank you for it. I know I can call you day or night and you'll be there for me no matter what.

Lexi I thank you for your support too. I know that you get some of what I'm feeling as we've talked about how young you are and what you need to face as you age. I appreciate it that you're there for me when I need you.

Vickie, you didn't really blindside me with your questions and basically everything Lynnwood told that I've done I am currently doing still. Yes, I use oxygen at home 24/7, I even sleep with it on. I never leave my home w/o it.

My comment about the EMT's was that I had been asleep using my CPAP and they removed it to suction the foam out of my mouth. I only vaguely remember that I couldn't breath and they were trying to bag me. That's all I was trying to get across. When they came to get me and I had this episode we didn't know at that time I had Central Sleep Apnea.

Yes, I do respiratory therapy three times a week, plus pulmonary rehab twice a week. I've been seeing a Hematologist/Oncologist since 2006. I have not refused treatment for mu leukemia. Nothing has been offered to me at this time. It would take way to many keystroke to explain the situation and I know that there are several mods who prefer we make short and sweet posts. As well as a veteran member feels that way too. If you'd like to give me a call I'd be more than happy to explain it all and you could pass on to the folks who asking questions about me.

I'm surprised that they can't ask me themselves, am I such a scary person? Anyway, yes, my therapist is totally aware of how I feel. She hears everything that I tell her. I keep nothing from her. The folks I can't seem to talk to is my family (hubby and daughter) it's just to darn upsetting for them. I worry about them and I don't want to upset them in anyway.

As for my Oncologist knowing I'm feeling worse, he doesn't know yet, I have an appointment scheduled to see him next week. I'll stop by the clinic tomorrow while I"m seeing my GYN/Oncologist their clinic are right next to each other. Like I've said over and over my military Dr have 24 to 72 hours to respond to ANY messages that I leave for them. I don't make the rules at Walter Reed, I can only do what I can. My Dr will know tomorrow I'm worse. Part of his problem is that he WANTS ALL of my Dr's on the same page for my treatment. Do you have any idea how difficult this is to accomplish. If you haven't dealt with a military facility and Dr's you won't EVER get how they function.

I sometimes post more in Lupus as Lupus patients are known to experience a million different issues and not think, "Oh that person is lying or deceiving us." I have seen some folks get grilled on this forum about what they've posted and it comes across that they are lying to the world. So I don't always put on the CP forum ALL of the health issues I deal with, cause dang it I feel like I'll be judge by some here. Can you understand that?

I'm not defensive over it, if someone has a question for me, they can ask me. If I don't want to answer it on a public forum I'll email them. If they want a letter from my Dr or a copy of a diagnosis of the chart I can and may provide it. I'm not sure why all of a sudden I'm being blasted.

I guess maybe this is certain peoples way of getting rid me here on the forum. I didn't know that I was a problem. I've been a member at HW since 2003 and I've NEVER done anything to be banned by Peter or even talked to by a moderator. I'm hurt more than defensive, I guess I'll just stay on the Lupus forum where I know and feel welcome.

Vickie, I'm not angry at you at all. You mention that a lot people off forum where asking these questions. So, they are brave enough to ask me myself, but they made sure to let me know I'm not welcome. You have my email and phone number. If you want to check in and let me know how you and some others here that I care a lot for are doing I'd appreciate.

To everyone that has supported me I thank you for your help, love, positive energy and prayers. I wish you all good ahead and less pain. Be well and take care.

Hugs,
Barbara

Barbara, please don't leave. I'm sure the people that had inquiries (I'm not one of the ones who emailed) did it from a place of loving concern and not out of spite or to make you feel bashed. During my hospital stay your posts were so encouraging and I really don't want you to leave after all this time. I personally didn't see anything that Vickie asked that warranted a long response from another mod since we ask a lot of questions for clarification on this forum to ensure that we know the entire scenario before giving any advice. I can sure say one thing though... Between both Vickie and Lynnwood you sure are loved! I think both posts came out of a loving place for you from two people who consider you a friend in their own lives and not just another poster.

I really hope you don't leave. Don't let this misunderstanding take you away from people who love and like you. You are such a valued member of our board. This place would definitely feel empty without your posts.

Lindsey

Just for clarity -

I didn't post as "a moderator from another forum" - I posted as a good long-time friend of Barbara's who could answer the questions more quickly/easily than having anyone wait for Barbara to make it back online. I have been reading posts from all of you here at CP ever since Barbara started posting in this forum - so I am no stranger to CP or it's members, it's just that y'all didn't know that.

I also did not say that I find questions or posts offensive - I said I "felt defensive" for my friend. I make (and made) no judgements on your questions or even your posts, I was apologizing in advance if you found my stance defensive, as I realized that was how I was feeling.

Written words simply don't work for all situations.

I'm sorry Lynnwood, I've never noticed you posting here before (as a friend or otherwise) so I thought another moderator was correcting her. My apologies to you.