Where I Think I'll Be Going/Doing

[SooMK]

This is not right but I admire your courage. I will be thinking of you. I hope I will have such courage when I need it.

[MooseMom]

Pea Tea, I cannot believe it has come to this.  Did your husband leave you with any financial cushion at all?  Life insurance?  Social Security? 

I can understand refusing something like dialysis; it can be such a devastating option for someone who is elderly and generally very ill from other causes.  And I can understand how such a person might want to go into hospice for assistance in managing the pain and discomfort that can come from getting off dialysis.  But something about going into hospice so that your oxygen can be removed, all because you simply have no place else to go, strikes me as something almost illegal and unethical.  Maybe I just do not fully understand what hospice does and does not do.

If apologizing to your brother and SIL has given you peace of mind, then I am glad.  If you have forgiven them, thus helping to heal your heart, then I am glad.  I, however, choose not to forgive them.

I support you in whichever decision you make, for what it is worth.

[PrimeTimer]

MM:  I have no income. My husband was 63 and drawing from his Social Security however, because I am not 60 (I'm only 57) I am not entitled to Survivor Benefits and to receive his Social Security. Instead, I had to apply for "Widow's"  Benefits. That is for those age 50 or older AND disabled. They have to contact my doctors to see if they are willing to declare me as being disabled. Being that I must be on oxygen 24/7 you'd think so but the final decision will be up to the Soc Sec Admin's panel of doctors.

As for hospice, I found one that may take me but are contacting my doctor to verify my illness and that I would die without supplemental oxygen, which is basically a form of life support. If I don't get approved, I can still remove the oxygen myself. Just thought being at the hospice would be a better place to "pass" but I honestly do not need to be at one if it's not approved.

I did more checking around yesterday and today and no, there is no available shelter or housing for the poor or homeless here. Thank you for your love and concern but you must believe that no matter what I will be alright.       

[PrimeTimer]

This is not right but I admire your courage. I will be thinking of you. I hope I will have such courage when I need it.

Thank you, SooMK.  I will be alright. I am feeling a lot better about it.

[Michael Murphy]

Please contact your congressional local office their staff may be able to help you find federally subsidized housing.

[UkrainianTracksuit]

 

Oh my goodness, I can't believe I missed this. Heartbroken.

Oh poor Pea Tea. 

[PrimeTimer]

Hello All. I can't say much right now but hospice was not approved for me. I wish it were. It was denied because I might have more than 6 months to live, they don't know.

I have been homeless since Sept 1st. I am still waiting to be approved for Widows Benefits and just found out that after nearly 4 months, my doctors never received forms from the Social Security Admin. I don't qualify for Survivors Benefits because I am not 60 (I'm 57) so they had me apply for Widows Benefits, which is for those age 50+ with a disability. In my case, the Sarcoidosis and the need to be on oxygen 24/7. I don't think I have to tell you that this is the worst and most extremely difficult time of my life. If having an illness and losing my husband weren't bad enough, being homeless has me down to the nub. I am trying to be hopeful in a world where somewhere to sleep, plug in my oxygen and some food are the most valuable and now, perhaps the only things that matter. I no longer speak to my brother (not that he's even tried to reach me). He abandoned me at my most critical time of need, obviously influenced by his wife. That's okay. I've become sort of a ghost anyways. Still breathing though. I will write more another time if I can. Hope all of you are doing well. Bye.

[MooseMom]

Pea Tea, reading this makes me absolutely livid.  There is absolutely no reason why anyone living in the United States of America should be in your situation.  This is supposed to be the richest nation the world has ever known, and when we have athletes making millions because they can throw a football with a modicum of accuracy, and when we have people who are so startlingly rich that they can make rocket ships to faff about in outer space, we should NOT have any single person who needs food, a home, and medical care.

I am so outraged that I could spit.  This is not right, and we should all be doing better in getting our priorities straight. 

Where are you, Pea Tea?  Where do you sleep at night?  How are you getting food?  How are you managing your physical disabilities?  This is just utterly disgraceful, and I am so sorry that we have all failed you as fellow citizens.

[SooMK]

Thank you for giving us an update, even though it is a nightmare. I second what MM has said. I want to believe this doesn't/can't happen here and yet obviously it does. Life seems so dark these days.

[kristina]

Dear PrimeTimer, I am so sorry that your desperate situation seems to "fall through the bureaucratic net" again and that there was no help for you so far and it is so sad that the hospice has not approved of your case and I can't comprehend their reasoning ...

I am so sorry that you have been homeless since the first of September (is there anywhere you can stay right now?) and I am also very sorry that you are still waiting to be approved for your Widows Benefits and the fact that your doctor has not received forms from the Social Security Administration. Is there a way that you could approach your doctor and ask for urgent help to assist and speed "things" up?

I don't understand that your suffering from Sarcoidosis is not being taken into account, despite the fact that it is medically well known as a very rare and very serious disease.

I feel so sorry that you need to be on oxygen 24/7 and it is so sad that your family fails to understand your medical dilemma. Could you  contact the Sarcoidosis Support Group and ask for urgent assistance?

I do wish you better luck in the future and hopefully there is some help & better luck coming your way a.s.a.p. very soon and I shall continue to keep my fingers crossed and send you all my best wishes from Kristina and please take great care. 

https://www.stopsarcoidosis.org/living-with-sarcoidosis/support-groups/

[cassandra]

Dear PT I’m so sorry for you, and like above members I’m disgusted about the situation you have to find yourself in. I can only hope your situation will improve soon.


Love you lots, strength and luck, Cas


 

[PrimeTimer]

Where are you, Pea Tea?  Where do you sleep at night?  How are you getting food?  How are you managing your physical disabilities?  This is just utterly disgraceful, and I am so sorry that we have all failed you as fellow citizens.

Long story short....I briefly stayed (lived) at a hotel where I snuck in my 2 cats. Getting there was an adventure but I made it. I am now staying at the home of a couple I hardly know from years ago. They offered me their home and altho we barely know one another, I took them up on their offer. I am grateful to these people.

While I am grateful, the living conditions here however, are less than ideal. They are very poor, of another culture than mine and live a much different lifestyle so I have much to adjust to right now. I am trying to learn the dynamics of this family because we obviously do not think alike. I seem to offend when I didn't mean to and at times, I think they are a little bit crazy. They think the world is going to end in 2 years and are "prepping" for it...buying camping gear, medical kits, doing a lot of canning, etc...

I sleep in a tiny room in the back of their house on an old smelly couch. I usually get to eat once a day but there have been days when there is no food. I've dropped more than 20 pounds in less than a month. I don't complain because they obviously care about me more than my own family did.  I consider these people my "new" family now. So while I am living with some unpleasantries, it could be worse, far worse. They are on the side of town that I have always avoided because of high crime, shootings, murder and drugs. And there are a LOT of homeless people in this area. I see them and feel terrible because I know it could be me sleeping under that tree. Or sitting on the dirt behind a fast food joint. Burglar bars on the windows of every house. They have a couple of "guard dogs" in the back yard...two beautiful German Shepherds. But they bite. I don't dare try to pet them, I stay indoors.

I have a little money left so I am still paying for insurance to get my meds. Hopefully my Widows Benefits will be approved soon and I can get my own small studio apartment. I can't live here forever and don't think I'd last anyways if I had to. For now I am just trying to "go with the flow", get along and survive. I miss my husband very much and I hope he can't see me because I know it would bother him. I am probably at the lowest point of my life but I'm alive and not giving up yet. I see some of the homeless people and see which ones who obviously need medical care and maybe even dialysis. No doubt the majority of them do not get such care. It's sad. I never imagined my life being like this but here I am. I bet the others who are homeless think the same thing. But I've got my new family and that is something. It's more than I probably deserve actually so like I said, I am grateful. I will try to keep in-touch but it will be touch-and-go. Getting to plug in my laptop isn't always convenient anymore. Take care everyone!   

[kristina]

Dear PrimeTimer, I am very sorry about your new situation and hopefully you can get a break very soon ...
Have you had a chance to contact the Sarcoidosis Support Group? Could they assist you and/or give you a direction and/or an idea where you could receive some assistance and help?

I send you my kind thoughts and please take great care,

best wishes from Kristina.

[SooMK]

You are doing the best that anyone could in this situation. It was kind of these people to take you in and offer to share what little they have. I worry because I know how often the thumb is on the scale against poor people. I am hoping you will be able to get to a more stable and safe environment soon. This too shall pass. We are all thinking of you.

[cassandra]

Stil thinking about you PT. are you okay?


   


Love you lots, Cas

[SooMK]

I've been thinking about PT a lot. Has anyone heard anything? I've sent her a couple of DMs but heard nothing after the first one. I keep thinking what a nightmare her life turned into. I hope she is ok.

[MooseMom]

Hers is just the most dreadful story.  Thinking about it makes me so sad and angry.  I hope she soon finds a way to communicate with us.

[kristina]

... I have been thinking a lot about PrimeTimer as well and I am hoping that she could find a positive way forward and perhaps could receive some practical help... and hopefully she is in contact with and can communicate with the Sarcoidosis Support Group ... and I very much do hope that we hear from her soon ...

[PrimeTimer]

UPDATE 02-15-22

Hello, ihd folks! Hope all has been doing well. I'm sorry for being gone so long and not replying. As many of you already know, I am going through a rough patch. No signs of it letting up yet either but I'm okay. After 5 months, I was finally approved for Disabled Widow Benefits. Then, once I turn 60 I can apply for Survivor Benefits, it pays a little more. I have 3 years to go.

Anyways, I will be brief. I am still living at the "House of Cuckoo", hoping to get my own apartment. There are long waiting lists for anything affordable. So I wait. It is not easy living in this house, too many people and too much drama. But I really have no choice because there really is nowhere else for me to go! So I'm hanging in there.

Missing my husband terribly -this is the worst part. Never have experienced such pain or sadness. It's only been about 8 months since he passed so the wound is still fresh. Just when I think I've cried all I can cry, no....here comes more tears. And I feel so alone without him. I live in a house full of people and yet, feel very alone. But I have managed to start bringing him up in conversations without breaking down, so I guess I've made a little progress.  Once I get my own place, I am thinking of some way to honor him. One idea is to find a way to reach out to people to let them know that they are not alone.  Loneliness amongst people seems to be at an all-time high. Obviously Covid may have something to do with this, but I think it has actually been going on long before Covid entered our vocabulary.

Healthwise, well....the Sarcoidosis has me in it's grip. I am not going to get better. But the doctor does say that if I continue with treatment and there is no further scarring of my lungs or damage to other organs, I could live many years with Sarcoidosis. Like they say, "you don't die FROM Sarcoidosis, you die WITH it". If I stop treatment, then obviously my life expectancy will be shortened. My doctor still wants me to be assessed for a lung transplant and I am still saying no. I already know I would not be approved.

Covid vaccination? Not yet. I've made two attempts to get off the Prednisone and Methotrexate in order to be vaccinated. It's best to be off those drugs for at least 2 weeks. Can't do it. So, my lung doctor says that "some protection is better than no protection" and to just go for it when I can. Had a fever a few weeks ago (was not Covid) and I did not need to be hospitalized but it did set me back. Couldn't do a thing. My oxygen level was all over the place. At one point it dropped to 68 and a few days after that, it dipped down to 54. Now THAT felt funny. It was as if I had no arms or legs. Spoke like I was drunk. Really really drunk only without the laughter.  Anyways, only now have I started doing small things and being interested again. I've lost a lot of weight...first because of lack of food and then because of lack of appetite. Feel and look like crap but no matter because I am still kicking. I am at the lowest point of my life and it's been pretty miserable but have NOT lost my will to live. So, I am still ticking and will continue to do so until I can't anymore. And I don't know but ever since that fever I feel different. Almost as if I'm a different person with a different personality. Very weird....

Okay, so I lied...this wasn't brief. I will need to spend some time reading posts and catching up. I really hope everyone has been doing alright. I often think of the ihd family and gleen some inspiration and strength. Every little bit helps.

[iolaire]

Thank you very much for the update PrimeTimer - I'm glad you are still on earth and hope that your life improves.

[SooMK]

Thanks for the update. So good to know that you are soldiering on. Please continue to let us know how you're making out.

[kristina]

Dear PrimeTimer and many thanks for letting us know how you are doing and how "things" are going and I send you my kind regards and keep my fingers crossed for you and send you my heartfelt good wishes from Kristina.

[cassandra]

Thanx for the update PT


Glad to read you are starting to make progress with your grieve. Still thinking about you a lot.


Stay strong my darling.


Lots of love, strength and luck, Cas

[PrimeTimer]

Thanks everyone for the kind words and well wishes. At times things seem practically unbearable. I try not to dwell on those things and if I have to, I "play house" in my mind...I think about what my new place will be like and how I will decorate it and the things I will do. I have plans but my main plan is to just try to enjoy life again.

Grief or rather, losing a spouse affects every aspect of your life and I do mean every aspect of it. It is like no other loss. It's extremely painful, often physically painful because you do so much crying and tensing up from having to face a reality that you don't want to and you can't eat or sleep properly. You also have a lot of paperwork to take care of and phone calls to make. Seems never ending. And people, no matter how sincere they think they are being, really do not understand this type of grief unless they have lost a spouse or a partner themselves. Their platitudes do not help. You can be surrounded by people, some of them well-meaning and yet, feel terribly alone.

The past 12 months or so have obviously affected me. The loss of my husband sure has. And having an incurable disease has literally scarred me. And then there is this house I'm in and it's characters. Some shady. Still better than being on the streets...but it wants to swallow me up. Somehow for some reason or another though, I keep going. I'd like to honor my husband and be his hero before the story ends. Hope to accomplish that sometime this year. I hate waiting lists...and it's not even a great place. Just an old cheap apartment. But it will bring me life like no other place has. Things are different now.


 

[kristina]

Dear Prime Timer and many thanks for your update. I admire your strength and I am also in awe of your courage and do hope you are not too long on the waiting-list for your new home and send you all my good-luck-wishes from Kristina.