The human costs of this nightmare aren't all going to be from COVID-19

[Rorey]

Last night my daughter called me. We talked for almost three hours.

She's not in good health. She was facing at least three surgeries in the coming months, and now it's very unlikely that she's going to get any of them. She has an arachnoid cyst on her brain stem, along with more lesions in her brain. A few weeks ago I took her to the ER because she couldn't stand the constant pressure in her head anymore. She already had an appointment with a neurologist, and the ER doctor referred her to a neurosurgeon. He said the cyst was larger than he had seen.

The appointment with the neurologist was supposed to be today. Earlier this week they called to postpone. She had been waiting for over a month. The appointment with the neurosurgeon is supposed to be on the 30th. We'd be fools to believe it's going to happen.

My daughter is in constant pain for several other reasons. Every part of her body hurts like hell, but she has always tried to remain upbeat. Last night was different. For the first time in her life, she said she doesn't know how long she can go on. She has been in pain for so long that she doesn't know what it's like to not hurt. She said she never really thought about killing herself, but she doesn't want to live anymore.

There will be many more casualties from this other than from just those from COVID-19. I hope my daughter can hang in there long enough to get help, but now the help that I have hoped for just got pushed back. What if it never happens? What if it's too late?

[malaise]

1. OMFG

[Rorey]

3. I'm sorry I'm being so negative

I've got to pull myself together so I can video chat with my other kids today. I got four calls from them last night while I was talking with my daughter, and by the time that conversation ended, it was too late to call them back. I will have to put on a happy face for those video chats.

One of my sons is in quarantine in the Denver area because someone in his office tested positive. He and his wife have a 15 month old adorable little girl. At least I get to sing to my granddaughter every day. I don't know when I'll get to hug her again.

I'm quite the Debbie Downer this morning. Gotta shake it off.

[malaise]

6. I'd be the same

These are tough times

[Rorey]

8. I just think about all of the other people in the same situation

Many others are also having essential treatments and surgeries pushed back. The nightmare goes way beyond the actual virus.

[malaise]

9. It dawned on us as a large family/clan that we may never again

see the entire group in the flesh. I mean if one of my siblings or their families dies, the rest of us can't even fly there for a funeral. It is really serious. As I reminded them on Facetime, we've had really great lives so there's that. I do fear for the younger generations.

[Rorey]

14. That's the revelation that I've had too

We can hope that things get back to "normal" again. That may never happen.

[Ilsa]

15. It's okay to be a DD this morning. My god,

your family is facing so much, and I ache inside for your daughter.

Hospitals have to find a way to resume surgeries. Hers is critical. I assume if a GSW comes into the ED they operate, patch up vital organs, staunch bleeding, give appropriate meds, antibiotics, etc. If they can do that, they need to be able to take on critical surgeries.

I'll be thinking about and praying for all of you.

Yes, I'm a trump-hater.

[pnwmom]

48. Rorey, don't apologize for anything. What you are going through sounds like hell.

Having a daughter with a serious health problem is terrible enough; having her at a distance, with both you and her doctors unable to help -- that would have been unimaginable just a month ago. It must be so frustrating and scary.

My husband was diagnosed with a stage 4 cancer this winter, and now we've had to cancel family visits because of coronavirus. So all our contact with our children and grandchildren now is by FaceTime. Thank goodness for that, I guess.

[soldierant]

63. One of the things we are here for is to read your words, to "hear" you, to feel with you.

You're not being a downer if you need to take advantage of that. It's the point.

[N_E_1 for Tennis]

2. ...no words

Just hugs...

[Rorey]

5. I can handle anything that comes my way

Except when it happens to my kids and grandchildren. I don't know.

But thank you.

[blueinredohio]

4. I wish you both we'll and hope she can hang in there.

I know most hospitals aren't doing surgeries but I would think this would be an exception. I understand the way she feels. I went through something similar a couple years ago. I told my doctor now I understand why people take their own lives if they can't get help. That was an awful feeling to have day in and day out. Check to make sure the appointment is still on and explain her dilemma.maybe they will be understanding. Keep us informed.

[Rorey]

11. Thank you

I'm going to encourage her to do that today. I told her to not hesitate to call 911 if she feels she can't take it, and she knows she can call me 24/7. She's the main reason that I'm even doing this strict isolation thing. I know if I carried this horrid virus to her it would kill her.

[Freedomofspeech]

7. So very sorry that you and your daughter are enduring all of this...

Hopefully she will get relief soon. Love and peace to both of you.

[Rorey]

12. Thank you so much

I appreciate your kind thoughts.

[handmade34]

10. hugs to you and daughter

I understand, you have reason to be upset, sad, angry... I am so sorry

[Rorey]

13. Thank you

Even hugs hurt my daughter. When I hug her, they're like "aura hugs", almost because I don't want to hurt her.

My grandsons and I started doing these "aura hug" things a lot of years ago. If they'd take off without giving me my hug, we'd do this mime-type hug thing from a distance. We always laugh about it, but those might be the only hugs we'll be giving each other for quite awhile now.

[UpInArms]

16. I am so sorry, Rorey

Hang in there ... and share all of our (((((((((virtual hugs))))))))) with your daughter

[Rorey]

19. Thank you so much

I will do that.

[yardwork]

17. I'm so sorry. I'm a mother too and my heart goes out to you.

I hope that your daughter gets the care she needs.

[Rorey]

21. So many rewards for being a mom

And the worry never ends when you become a parent.

That's what I told my youngest son awhile back. He's got a 15 month old daughter now, and his love for her overwhelms him. He tells me all of the time about the fears he has that this or that will happen to her. I told him, get used to those worries. He'll have them for the rest of her life.

Thank you so much for your kind thoughts.

[yardwork]

56. ....

[Joinfortmill]

18. I am so sorry your daughter is facing such a terrible illness

I said a prayer for her and for you. If I could I would hug you both.

[Rorey]

20. You are so kind.

Thank you.

[hkp11]

22. So sorry to hear about your daughter

Praying that your daughter can just hang on to get help! Maybe see if another neurologist is available.

Unfortunately, these are the situations that will be postponed and cause more deaths (not for your daughter) in the healthcare system and will not be counted as the side effects of the pandemic coronavirus #s.

Drumpf and Repukes don't care about anyone EXCEPT themselves!!! They have no humanity, empathy and caring for others!!!

[Rorey]

23. Yeah, they don't care

The health care system even prior to this is the biggest reason that my daughter is in the situation she's in. When you can't get help WHEN you need it, the problems just get worse.

Some of them may get a taste of what it's like to be on the other side.

Thank you for your prayers.

[evemac]

24. Big virtual hugs to you

Sending prayers and positive thoughts to the universe that she will get the medical care she needs.

[Rorey]

25. Thank you so much

Your prayers and thoughts are much appreciated.

[Dream Girl]

26. How awful. I'm so sorry. Is the surgery considered elective? Perhaps it's medically necessary?

[Rorey]

27. I definitely don't consider the surgeries elective

But her appointments with the doctors who will do them keep getting postponed. She's been battling with this brain thing for years. FINALLY got a referral to a neurologist and then it got postponed. FINALLY got an appointment with a neurosurgeon, which is supposed to happen on the 30th. I have no confidence that it's going to happen.

She also has an appointment with a orthopedic surgeon next month. She has torn tendons in her arms. She also has a herniated disc in her spine, she has scoliosis, and she's having horrendous pain with her periods. Plus she's got a skin affliction, which she has had since she was a baby. It's just one damned thing after another, and it's wearing her down.

To look at her, one would think that she's fine. For years a lot of people in her life couldn't conceive of the fact that she has had these things going on because they can't see them. It just adds salt to the wound for her. When her doctor speculated MS, some finally started realizing they judged wrongly. What a lot of them don't know is that she has a family member on her dad's side who had brain cancer, so that's heavily on my mind too.

Thank you so much for your kind thoughts. I'm going to try to get her to allow me to go to her appointments with her so I can help her get her thoughts across. She's having a lot of trouble with that. Forgets things a lot.

[Dream Girl]

28. My heart goes out to you. Here's hoping she get the intervention that will free her be from pain.

[geardaddy]

29. What an awful situation.

I'm so sorry.

[Rorey]

39. Thank you so much

I feel like I was being selfish even posting it. SO many folks are having a difficult time that goes beyond COVID-19.

[MLAA]

30. Sending her kind thoughts 💫

[Rorey]

40. On behalf of my daughter

Thank you

[mountain grammy]

31. I'm so sorry.

This is devastating..I only wish there was something I could do. Feeling helpless watching friends go through this and furious that it's all caused by and incompetent and uncaring government.. What a disaster. I sincerely hope your daughter gets help soon.

[Rorey]

41. Yes, so many were going through absolute hell even before this

This only makes a horrible situation even more horrible.

Thank you.

[Marthe48]

32. I thought about this yesterday

I got sad and unexpected news from my cousin and as we spoke of that sad news, and other changes, I thought that against the backdrop of the devastation in the world, for better or worse, we will be facing events in our daily lives.

My sister was able to keep an appt. with a dr. who treats chronic pain. That was the beginning of this week. She said another appt. will be by telephone. I wonder if the neurologist will be able to make arrangements for video or phone appts. for your daughter? I wonder if doctors across the country are gearing up to handle their patient load remotely? I wonder if there will be sterile areas in hospitals where people like your daughter can go to get surgery, help of any kind.

I hope you get better news from your daughter. I would be hard hit to hear despair from my kids, but hope you can share her burden and make it lighter on her.

[Rorey]

42. I'm so sorry for your sad news

I am hoping that all doctors will do phone or video appointments. I fear that billing issues may delay it. Another thing the govt should address.

Thank you for your kind thoughts.

[kairos12]

33. I am sending you and your daughter my strongest healing thoughts.

[Rorey]

43. You are so kind.

Thank you.

[MerryBlooms]

34. Being a mom is a tough job, especially when one our babe's is suffering.

I'm sorry for your daughter's horrible pain and I hope and pray she can hang in there. I'm glad she has you to continue to help lift her up and be there for her.

[Rorey]

44. She tells me every day

Every time we talk she says she doesn't know what she'd do without me. I know if something happens to me, her brothers will step up. They've made that promise to me.

If it wasn't for her, I'd probably be a bit more cavalier about this isolation thing. I can't get her sick, so I'm staying put. If she needs to go to the ER, I'll wear protection (for her sake) and take her.

Thank you for your kind thoughts.

[cilla4progress]

35. Loving, healing thoughts

to you and your daughter!

[Rorey]

45. You are so sweet

Thank you so much.

[joanbarnes]

36. So sorry. My S/O and millions waiting for an organ transplant now will wait longer.

Blessedly, so far he does not suffer a lot of pain.

[Rorey]

37. OMG, I can't even imagine!

This just adds a whole new element of emotion to all of these situations.

[gademocrat7]

38. So sorry for your daughter's ordeal.

Sending hugs of support.

[SWBTATTReg]

46. All of us are looking for strength and courage wherever we can find it. These stories that we ...

are hearing / seeing on DU go a long way in stoking up the courage and energy in me, and I'm sure in a lot of other people.

Your story gives me strength. Your daughter gives me strength. You can't imagine the energy (and sadness of course) that your story give me, of how you and your daughter are handling this terrible ordeal. I know it wasn't planned this way, or intended this way, but in a small way, you helped me, and perhaps all of us on DU.

I have tears, but I don't want to cry, I am scared, but I want to be strong for others who rely on me. I have no appetite, for I have lost it, but I force myself to eat something.

This is a scary situation for all, and although being scared is fine, we must face what is coming, w/ summoned strength and courage from the depths of our souls. This is a time where we all search deeper into our selves to find reserves of energy and strength, and if we're lucky in finding it, share it with others who need it.

You're absolutely right in that we're going to see all kinds of casualties from all directions. I have called a couple of friends and the first thing they did was go into prolonged ranting, ranting, and anger. I understand why, and that the dismal failures to all of us comes from this idiotic president and his administration, and he will pay the price. He will.

But really, what I wanted was some sort of reassurances from those long term, good friends (the two I called) and got instead, a diatribe. I guess what I think I am saying is that we all need more patience, more understanding, more of the good human traits that make all of us on DU the kind of people we all are. I will call back my two friends and visit via the phone again, after I have built up my strength to do so.

Thank you for your story (in sharing). My energy, heart and blessings go out to you, your daughter, and yours.

[crickets]

47. I am so, so sorry.

[live love laugh]

49. My oncologist appointment is delayed until this ends.nt

[projectiboga]

50. I'm so sorry for Her, you and your family.

This is why we need single payer, so every one keeps up with most everything. We also need to under a national health system make sure we have enough doctors. The AMA has under provided medical school seats, since at least the 1940s. Finally having all the treatment results on one big list of sorts would make it easier to find the best medicines.

Second is your daughter in a Medical Marijuana state? If so maybe she can try Rick Simpson Oil, a full spectrum extract, that might ease her pain, and maybe get the tumors to shrink until she can get surgery.

Take care, and best wishes providing her enough emotional support to hold through for a little while.

[onecaliberal]

51. I am so sorry your daughter is going through all of this. I hope she can hold on.

My heart is breaking for you both. 💔

[Doreen]

52. I am worried about my 82 year old mother.

She is supposed to have heart surgery. I am worried about 2 things. I worry she will not get it or have it pushed back. Her doctor said she is surprised my mother is alive. The second is her being in the hospital for the actual surgery with all of the possible direct access to the virus.

[Nululu]

53. My problem is similar

I wanted to add my sympathy for what your daughter is going through and hope she hangs in there and improves.

I may have pancreatic cancer. I had surgery scheduled to remove my spleen and most of my pancreas (after waiting a month)

Now my surgery is postponed a month. This could shorten my life or I could die waiting for it.

They've stopped all nonemergency surgeries and who knows if next month will be better?

They are worried about the spread of the virus and hospital supplies. I wonder how many hospital supplies like gloves, masks, IV bags and drugs have been outsourced by greedy, shortsighted corporationd?

We don't know how many hundreds or thousands are impacted by this.

[diva77]

54. I am so sorry to hear this. I don't know if you're aware of www.pancan.org

Pancreatic Cancer Action Network

They might have some useful info. to help you through this

[Nululu]

57. Thanks for the link.

So many of us are facing a scary time. I'll look into it.

[diva77]

55. Best wishes to you, your daughter & family

So very sorry about your situation.

...sending virtual hug

[MiniMe]

58. Interesting

I'm so sorry for what you are going through. But what your daughter is going through doesn't sound like anything elective. I am scheduled to get a defibrillator implanted on Monday. I actually asked them if I had to get it implanted now. They told me the surgery was not elective. I have to spend the night too. The good thing is that I can get rid of the "wearable defibrillator vest" as it is causing a rash on my back. But not crazy about spending the night.

[misanthrope]

59. That's awful

Very sorry both she and you have to deal with this.

[treestar]

60. Hugs to you both

So sorry you are going through this and at this time.

[mountain grammy]

61. I saw a story on Denver local news about this issue..

God to see it being reported. What a nightmare he’s caused. I’m so sorry.

[BootinUp]

62. i can't imagine. nt

[Demovictory9]

64. k&r

[JudyM]

65. Wishing her the best possible outcome, and the fortitude and peace of mind to endure the wait.

[stopwastingmymoney]

66. I'm so so sorry this is happening to your daughter

I’m crying as I try to find words of comfort for you. I remember when my daughter was small and had the flu, how I cried because I couldn’t make it better. Nothing compared to what you face. Please tell us her first name so we can send her love, vibes, prayer.

Be kind to yourself, with love...

Joanna

[Rorey]

67. Thank you, to you and everyone who sent their good wishes

She told me yesterday that she felt a little better than she did the day before, so that's encouraging. I'm just so hoping that her appointments don't continue to get postponed. We have long phone conversations every day, so I hope that helps her as much as it helps me.

When she was almost 12, her daddy died. He was 38. She's just a bit older than that now. She was definitely "daddy's girl". Her brothers are the spitting image of their dad, especially now that they're approaching the age that he was when he died. That probably doesn't help. For me, it's kind of a sad comfort that the boys look like their dad, if that makes any sense. All three of them have talked a lot more about their dad in the past couple of years.

One thing that really gets to me is her apologies about complaining or crying. I know she's not telling me everything. She doesn't want to worry me.

I'm helping her all that I can to try to have a positive attitude. Hope is one of the best medicines.

I truly appreciate the kind thoughts. From everyone.