Immunocompromised and invited to social gatherings

Posted by annieg87 @annieg87, Jan 13 12:16pm

I have psoriasis and psoriatic arthritis and am on a biologic and methotrexate. I also have chronic lymphocytic leukemia(CLL), stage 0 and doing “wait and watch”. I’m up to date on the covid vaccines and have had a flu shot, but I’m still hesitant to join large family gatherings. Going on 3 years now, I’ve been absent from all the celebrations—holidays, birthdays, baby and wedding showers, etc. Almost everyone in my family has had covid, sometimes 2 and 3 times, and most of them haven’t been vaccinated, believing it’s unnecessary since they now have sufficient antibodies.
I did take a chance and joined them for Christmas this year, but now the flu, RSV, colds and other infections have been rampant among my family members, especially with my great-grandkids. I’m 77, btw. Anyway, I seem to be the only one still concerned about getting covid; life is pretty much back to normal for everyone else, and I get the feeling they think it’s unnecessary for me to avoid social gatherings.
I’d appreciate anyone’s input, especially if you’re in a similar situation.

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@annie87 Yeppers, I sure can relate to what you are experiencing! I am immune compromised due to health issues. I mask up all the time, have had 4 Covid vaccines plus Evusheld, do the hand sanitizer, etc.

In this little town, people rarely mask up. My husband rarely masks up. I am on city council, and was the only one wearing a mask last week at the meeting. I have decided that it is for my own good that I take care of myself. That means I keep to myself, don't go very many places, and have to be careful of who I come in contact with. For me to get sick, it could truly be disastrous. It is not popular these days as people had to wear masks, now that the mandate has lifted in many places, they don't want to see how protective it can be. So, we need to think of our own health.
Ginger

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Hi @annieg87 It sure does feel like everyone else has moved on from Covid…but it isn’t over by a long shot. Those of us who are immunocompromised are still faced with the possibility of becoming seriously ill from this virus, the flu, RSV or any other communicable diseases, including food born bacteria and fungi. Our world is a little scarier because of our conditions.

You’re right to continue to be cautious. Unfortunately not everyone understands the personal challenges we face. I had a bone marrow transplant and also have to avoid social gatherings where there are people not wearing masks. I’ve missed funerals, weddings, baby showers, holiday parties, etc., and though I feel badly about it, I know that I can’t take chances. Summer is when our friends and families make up for lost time by having our get togethers outside on porches and decks.

When anyone comes to our home we ask them to mask even if it’s the HVAC people servicing the furnace. My husband is my caregiver so he has to say healthy as well. We mask up getting groceries or anytime we’re out in public whether it’s in the elevator of our condo building or walking through a lobby. I can’t say most of my family and friends understand but that’s ok. Those who are important to me have my back and have no problem wearing a mask when we’re together. I have one family member who refuses to mask up so that is her decision then not to be with us.

If you do chose to go to a small social event, you certainly should mask up with a good N-95 mask that fits well. Bear in mind a mask is very helpful but it isn’t a 100% barrier either. What would be best to avoid is a large gathering where there are families with children coughing, people laughing and having to speak loudly, that’s where the most exposure happens and are the riskiest scenarios. Sadly, it’s best to avoid those situations. Now, if everyone would have some compassion and concern for people who are immunocompromised and mask up, then we could all be in the room together. That level of concern for others seems to be sorely lacking.

Hopefully this doesn’t bring on another heated discussion about the efficacy of masks. I know there are strong feelings on both sides of the masking issue. But they do work, I’m living proof of this. Transplant patients were required to wear N-95 masks to protect themselves long before Covid came into being and they’ve kept me safe.

It’s difficult to convince people who aren’t going through a similar health issue the dangers that we face when our immune systems aren’t as robust. But I feel if you let people know that a large gathering isn’t safe for you, most will understand.
Do you have a home covid test kit and wear N-95 masks?

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@loribmt

Hi @annieg87 It sure does feel like everyone else has moved on from Covid…but it isn’t over by a long shot. Those of us who are immunocompromised are still faced with the possibility of becoming seriously ill from this virus, the flu, RSV or any other communicable diseases, including food born bacteria and fungi. Our world is a little scarier because of our conditions.

You’re right to continue to be cautious. Unfortunately not everyone understands the personal challenges we face. I had a bone marrow transplant and also have to avoid social gatherings where there are people not wearing masks. I’ve missed funerals, weddings, baby showers, holiday parties, etc., and though I feel badly about it, I know that I can’t take chances. Summer is when our friends and families make up for lost time by having our get togethers outside on porches and decks.

When anyone comes to our home we ask them to mask even if it’s the HVAC people servicing the furnace. My husband is my caregiver so he has to say healthy as well. We mask up getting groceries or anytime we’re out in public whether it’s in the elevator of our condo building or walking through a lobby. I can’t say most of my family and friends understand but that’s ok. Those who are important to me have my back and have no problem wearing a mask when we’re together. I have one family member who refuses to mask up so that is her decision then not to be with us.

If you do chose to go to a small social event, you certainly should mask up with a good N-95 mask that fits well. Bear in mind a mask is very helpful but it isn’t a 100% barrier either. What would be best to avoid is a large gathering where there are families with children coughing, people laughing and having to speak loudly, that’s where the most exposure happens and are the riskiest scenarios. Sadly, it’s best to avoid those situations. Now, if everyone would have some compassion and concern for people who are immunocompromised and mask up, then we could all be in the room together. That level of concern for others seems to be sorely lacking.

Hopefully this doesn’t bring on another heated discussion about the efficacy of masks. I know there are strong feelings on both sides of the masking issue. But they do work, I’m living proof of this. Transplant patients were required to wear N-95 masks to protect themselves long before Covid came into being and they’ve kept me safe.

It’s difficult to convince people who aren’t going through a similar health issue the dangers that we face when our immune systems aren’t as robust. But I feel if you let people know that a large gathering isn’t safe for you, most will understand.
Do you have a home covid test kit and wear N-95 masks?

Jump to this post

Lori, I certainly appreciate your response and validation that keeping my reclusive lifestyle is totally appropriate. Besides dealing with family, I live in senior housing and my neighbors, despite having health issues, don’t wear masks or keep their distance. One who is mentally challenged but very socially active is always coming to my door for various reasons, and she is an inveterate hugger! What’s especially sad and troubling is that her home health care worker just passed away. I don’t know the cause, but it was rather sudden and not too long since this neighbor had been ill, herself.
I do have the N-95 masks, but my covid test kit expired, so need to get another one. I don’t go out much; order my groceries online and use curbside pick up, and visit the health center for monthly biologic injections and dr. appointments (masks are no longer required there, either). My oncologist is a nice guy but always in a hurry and not that available. I’m supposed to see him every six months, but it will be over ten when I see him next month. When I asked for advice regarding covid, he didn’t offer much, remarking that we are social animals, after all. That’s why I’m so grateful to have this connection with the Mayo Clinic and folks like you!
My youngest grandkids, boy and girl twins, are celebrating their 16th birthday next week with a pizza party. I really regret missing this milestone birthday but knowing I have support in declining the invite helps a lot, so thanks again!

REPLY
@gingerw

@annie87 Yeppers, I sure can relate to what you are experiencing! I am immune compromised due to health issues. I mask up all the time, have had 4 Covid vaccines plus Evusheld, do the hand sanitizer, etc.

In this little town, people rarely mask up. My husband rarely masks up. I am on city council, and was the only one wearing a mask last week at the meeting. I have decided that it is for my own good that I take care of myself. That means I keep to myself, don't go very many places, and have to be careful of who I come in contact with. For me to get sick, it could truly be disastrous. It is not popular these days as people had to wear masks, now that the mandate has lifted in many places, they don't want to see how protective it can be. So, we need to think of our own health.
Ginger

Jump to this post

Ginger, thanks for the feedback. Misery does love company, although “misery” is overstating it a bit; I’m not that bad off…yet. I’m in a small town, too, and seldom see anyone in a mask. I’m rarely out in public, though. Besides being immune suppressed, I have mobility issues and lack of stamina due to PsA. How I miss the all day shopping with my daughter and granddaughters! Or spending an afternoon at the library. Once in a while I visit the dollar store in late afternoon when it’s not busy; I can park near the door and make a quick exit if my back starts to give out.
I have to confess I give my back pain and fatigue as the reason for declining invitations before admitting I’m worried about catching covid or some other infection.
Anyway, I appreciate your input and your story. It gives me the confidence to be honest, to “state my truth”! 😉

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@annieg87 – As you see, you are not alone.
I just have a finicky immune system. An autoimmune illness that’s not too active now, but I can have severe asthma, diabetes and catch viruses easily. I mask up in a lot of places. I’m 78.
I gave up tennis 3 years ago because of Covid. Germs thrive on tennis balls in my experience- once caught a respiratory illness where I ended up in the hospital. The person who shared it was coughing the whole match.
I think the decisions you make not to attend big family gatherings are the correct ones.
Covid is still around us.
I just texted with a friend who is a nurse. Their son just got married- everyone there got Covid!
I know it gets lonely. People forget you. We retired to this place some time ago. I made friends=acquaintances playing tennis. They forgot about me, but that’s ok.
Stay healthy- don’t take risks.

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@annieg87

Lori, I certainly appreciate your response and validation that keeping my reclusive lifestyle is totally appropriate. Besides dealing with family, I live in senior housing and my neighbors, despite having health issues, don’t wear masks or keep their distance. One who is mentally challenged but very socially active is always coming to my door for various reasons, and she is an inveterate hugger! What’s especially sad and troubling is that her home health care worker just passed away. I don’t know the cause, but it was rather sudden and not too long since this neighbor had been ill, herself.
I do have the N-95 masks, but my covid test kit expired, so need to get another one. I don’t go out much; order my groceries online and use curbside pick up, and visit the health center for monthly biologic injections and dr. appointments (masks are no longer required there, either). My oncologist is a nice guy but always in a hurry and not that available. I’m supposed to see him every six months, but it will be over ten when I see him next month. When I asked for advice regarding covid, he didn’t offer much, remarking that we are social animals, after all. That’s why I’m so grateful to have this connection with the Mayo Clinic and folks like you!
My youngest grandkids, boy and girl twins, are celebrating their 16th birthday next week with a pizza party. I really regret missing this milestone birthday but knowing I have support in declining the invite helps a lot, so thanks again!

Jump to this post

You’re in a tough place with your neighbor dropping by…and a hugger. One thing that may help is having a packet of masks hanging near your door. We do this at our house. I have a hook with a baggie of new masks. When someone comes unexpectedly and will be entering the house, we ask them to mask up.
Considering you’re in a senior housing setting can you put a little note on your apartment door that says Masks Required? I have friends who have done that where they live. Now when people drop by they know to wear a mask. Sometimes just being forewarned helps.

For a covid test, if you live in the US you’re able to get freebies from the government delivered with the postal service.
Here’s the link https://www.covid.gov/tests/
They arrive fairly quickly and then you’re prepared in case you feel the need to test.

I’m sorry you’re missing the grand 16th b-day of the twins but this can be an important learning lesson of thinking beyond themselves by having compassion and understanding for others.
You can let them know how much you love them, that you’re sad to be missing the celebration but that you have health concerns. Maybe they can visit (masked) with you in a quiet and not busy common area so that you can have your own little celebration with them. We had our daughter and son-in-law over the holidays for several days. All 4 of us were masked anytime we were indoors. We even ate at our small table together with masks on! 😂 We moved the mask down with bites and then right back up. That way we can laugh and talk fully at the table without spreading any aerosol across the table. It is a way of life and my family is very accepting. When my husband and I are alone, then we don’t need to mask. But with visitors…it’s just what needs to be done. I didn’t go through everything I endured the past few years to potentially succumb to a virus that is avoidable.

Stay strong for yourself. ☺️

REPLY
@loribmt

You’re in a tough place with your neighbor dropping by…and a hugger. One thing that may help is having a packet of masks hanging near your door. We do this at our house. I have a hook with a baggie of new masks. When someone comes unexpectedly and will be entering the house, we ask them to mask up.
Considering you’re in a senior housing setting can you put a little note on your apartment door that says Masks Required? I have friends who have done that where they live. Now when people drop by they know to wear a mask. Sometimes just being forewarned helps.

For a covid test, if you live in the US you’re able to get freebies from the government delivered with the postal service.
Here’s the link https://www.covid.gov/tests/
They arrive fairly quickly and then you’re prepared in case you feel the need to test.

I’m sorry you’re missing the grand 16th b-day of the twins but this can be an important learning lesson of thinking beyond themselves by having compassion and understanding for others.
You can let them know how much you love them, that you’re sad to be missing the celebration but that you have health concerns. Maybe they can visit (masked) with you in a quiet and not busy common area so that you can have your own little celebration with them. We had our daughter and son-in-law over the holidays for several days. All 4 of us were masked anytime we were indoors. We even ate at our small table together with masks on! 😂 We moved the mask down with bites and then right back up. That way we can laugh and talk fully at the table without spreading any aerosol across the table. It is a way of life and my family is very accepting. When my husband and I are alone, then we don’t need to mask. But with visitors…it’s just what needs to be done. I didn’t go through everything I endured the past few years to potentially succumb to a virus that is avoidable.

Stay strong for yourself. ☺️

Jump to this post

Lori, thanks again for your suggestions and sharing your experiences. It does help to see a situation from another’s perspective. And wishing you the best in these surreal and trying times. 🙏🏻

REPLY
@astaingegerdm

@annieg87 – As you see, you are not alone.
I just have a finicky immune system. An autoimmune illness that’s not too active now, but I can have severe asthma, diabetes and catch viruses easily. I mask up in a lot of places. I’m 78.
I gave up tennis 3 years ago because of Covid. Germs thrive on tennis balls in my experience- once caught a respiratory illness where I ended up in the hospital. The person who shared it was coughing the whole match.
I think the decisions you make not to attend big family gatherings are the correct ones.
Covid is still around us.
I just texted with a friend who is a nurse. Their son just got married- everyone there got Covid!
I know it gets lonely. People forget you. We retired to this place some time ago. I made friends=acquaintances playing tennis. They forgot about me, but that’s ok.
Stay healthy- don’t take risks.

Jump to this post

@astaingegerdm—Sorry for this late reply; my server couldn’t be found (whatever that means) and I couldn’t access the internet for awhile. I do appreciate your understanding and encouragement. And sharing your circumstances. I can’t relate to playing tennis at this age (you have my greatest admiration!) but I can identify with living a restricted life after being a free spirit. Well, on occasion I can still dance when nobody’s watching…😏
Covid can be so unpredictable. My son is an RN and was working in the ER of a Navajo Nation hospital at the height of the pandemic, before the vaccines, and didn’t get it til over a year later, after being vaxxed. He does understand my predicament and keeps in touch, but still it gets lonely, as you say. Take care and thanks again for being there.

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I was diagnosed with Giant Cell Arteritis and Polymyalgia Rheumatica in 2020. My rheumatologist told me that I did not want to get even a sniffle because I could end up in a hospital. I listened to him and I am extremely careful what I do socially. If I am with others, I ask for them to wear masks, also. I never eat near others unless it is outside. Yes, it can be a lonely existence but it beats being sick(er). Only the best to you.

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In a like situation. I am 76 years old. Wear my mask everywhere. I sigh when I hear someone coughing, I know I will get whatever they have and it will be a struggle to get rid of it.

I am Igm deficient and there is no one where I live that I can see about it. Have 6 autoimmune diseases, smoldering Multiple Myeloma and severe iron deficiency. My hemo/onc team is trying to figure out why I have the severe aniema, They had me go to do a series of tests with my gastroenterogist. H Ie found nothing. He thinks I may have autoimmune hemolytic anemia. I told my hemo/onc team about night sweats (gone now) and swollen lymph nodes and got a note from one of the nurses, that " the issue has been resolved and have not seen them yet for a discussion. Now my iron has gone up closer to normal, they are telling me that I am getting better. I know that will not last and my lymph nodes are still enlarged. I know there is something wrong and I have to keep pushing. Not myeloma but could I not have an additional dx.
I have been extremely isolated. I only go out to doctors, lab tests and the hospital if I need an emergency blood transfusion. People don't get it. I want to go to activities in our senior apartments but need to stay a hermit,

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