Turned down for booster

[Spanky88]

I am in New Mexico and the registration for vaccine asks if you are immuno compromised. I consider myself to be so I checked it and listed my condition as CFS/ME. With my first set of shots it was no issue and I got them a little bit earlier due to this.

I was contacted by the state to schedule a booster shot and I did. I have been very unwell so it took great effort to drive the 30 or so minutes to Walmart. I told them I had cfs/me and how sick I was and had been disabled for years and they said I don't qualify for being immuno compromised. It just felt like another slap in the face trying to fight for recognition. I could have argued but I don't have the energy.

 

[Jyoti]

So sorry @Spanky88. It is absurd how many of those slaps we end up being on the receiving end of. And of course all of us here understand just what is entailed in driving 30 miles to WALMART. The lights inside, the energy, the overwhelm after the drive. To end up with nothing after that expenditure is so discouraging. I am sorry.

 

[Spanky88]

So sorry @Spanky88. It is absurd how many of those slaps we end up being on the receiving end of. And of course all of us here understand just what is entailed in driving 30 miles to WALMART. The lights inside, the energy, the overwhelm after the drive. To end up with nothing after that expenditure is so discouraging. I am sorry.

Thanks it was discouraging. The lady was looking at me really weird I think because I am middle aged and don't look ill i guess. They gave me a weird vibe. Just another reason for me to hate Walmart. I rarely ever go there for anything ever when able.

 

[belize44]

Thanks it was discouraging. The lady was looking at me really weird I think because I am middle aged and don't look ill i guess. They gave me a weird vibe. Just another reason for me to hate Walmart. I rarely ever go there for anything ever when able.

I despise Walmart and never go there for anything if I can help it. The fact that you had a bad experience there doesn't surprise me at all. Is there any place else you could go to for the booster shot?

 

[Spanky88]

I despise Walmart and never go there for anything if I can help it. The fact that you had a bad experience there doesn't surprise me at all. Is there any place else you could go to for the booster shot?

Yeah I hate Walmart for many reasons. Just a horrible corporation. I can try to reschedule somewhere else and I think the booster shot opens to everyone in not too long. It's just the fact that I am tired of having to fight to have adequate treatment and respect for my condition.

 

[Rufous McKinney]

I can try to reschedule somewhere else and I think the booster shot opens to everyone in not too long. It's just the fact that I am tired of having to fight to have adequate treatment and respect for my condition.

I went thru Rite Aide and liked the general scene. However, boosters are different.

Frankly- why tell anyone like that you have ME CFS? Given what we know, thats like speaking Russian.

My second shot came with a lot of questions which, had i answered them honestly, looked like i"d get sent back to my doctor, rather than receive Jab 2. So I said- I am immune compromised but I have conferred with my Primary doctor and I am to get this shot.

So I got the shot. The pharmacist- had his own issue he shared with me, given I asked questions.

I asked if he received "support" there at work, without a colon. This guy spent a year in the hospital. I felt terrible for him.

but ME CFS does not compute in the general world. Fighting for its recognition is worth it, but pick your battles.

 

[belize44]

but ME CFS does not compute in the general world. Fighting for its recognition is worth it, but pick your battles.

I agree. Plus, some drones are too lame to understand complex health disorders, so simply say your doctor advised you to get a booster because you have autoimmune issues. I hope you get the help you need!

 

[Spanky88]

I went thru Rite Aide and liked the general scene. However, boosters are different.

Frankly- why tell anyone like that you have ME CFS? Given what we know, thats like speaking Russian.

My second shot came with a lot of questions which, had i answered them honestly, looked like i"d get sent back to my doctor, rather than receive Jab 2. So I said- I am immune compromised but I have conferred with my Primary doctor and I am to get this shot.

So I got the shot. The pharmacist- had his own issue he shared with me, given I asked questions.

I asked if he received "support" there at work, without a colon. This guy spent a year in the hospital. I felt terrible for him.

but ME CFS does not compute in the general world. Fighting for its recognition is worth it, but pick your battles.

Honestly I wasn't prepared for a issue because the first place I went I told them and they gave me zero issues. Next time though I will just say I have an autoimmune disease and on immunosuppressive drugs or something. Keep it real simple for them.

 

[Rufous McKinney]

Honestly I wasn't prepared for a issue because the first place

well thats so typical for us....

here lately, I find being vague is far more clear. Whats interesting is when we are vague, they often do not ask for more specifics (like what is this "neuroimmune" condition you have?) If they asked, I'd use ME as i never say CFS. thats the guarantee you won't get any help, or you'll hear all about how Oh yes, had that, got over it.

Technically my diagosis is SEID. Which NOBODY has ever heard of,

 

[Spanky88]

well thats so typical for us....

here lately, I find being vague is far more clear. Whats interesting is when we are vague, they often do not ask for more specifics (like what is this "neuroimmune" condition you have?) If they asked, I'd use ME as i never say CFS. thats the guarantee you won't get any help, or you'll hear all about how Oh yes, had that, got over it.

Technically my diagosis is SEID. Which NOBODY has ever heard of,

It's still bullshit. It's ridiculous we have to apply strategies to get help. I feel like I have to play a role in every medical setting and even for people I know. Just tired of the game but I get where you are coming from.

I had to look up SEID too. I actually never heard of of it described that way either.

 

[Rufous McKinney]

I had to look up SEID too. I actually never heard of of it described that way either.

I've never even had the chance to ask my doctor why he loves the term Systemic Exertion Intolerance Disease.

He lept up and down, after my 5 minute diagnosis.

But heck at least I've got a REAL disease not no stinking Syndrome....

 

[Spanky88]

I've never even had the chance to ask my doctor why he loves the term Systemic Exertion Intolerance Disease.

He lept up and down, after my 5 minute diagnosis.

But heck at least I've got a REAL disease not no stinking Syndrome....

It's definitely a better description. CFS is a real lame name it needs to be changed in my opinion. People I tell, "say geeze I am tired all the time. I didn't know you could get disability for that. "

 

[hapl808]

It's still bullshit. It's ridiculous we have to apply strategies to get help.

CFS is a terrible name and myalgic encephalomyelitis is too long and not helpful. We need the branding people who worked on multiple sclerosis. That's some branding.

Stupid that we have to apply strategies to get help, but true with medical professionals, friends, etc.

 

[Sushi]

I am in New Mexico and the registration for vaccine asks if you are immuno compromised. I consider myself to be so I checked it and listed my condition as CFS/ME. With my first set of shots it was no issue and I got them a little bit earlier due to this.

I am also in New Mexico and plan to wait until I come up in the ‘normal’ population in October—8 months after my last vaccination. I got mine through the Presbyterian system and they were wonderful.

 

[BrightCandle]

CFS was chosen as a renaming to diminish the condition, it wasn't am accident. There is a reason many call it by its original name termed by the doctors who dealt with it during an outbreak in their hospital based on its obvious symptom. Frankly I don't care what its called, but this systemic mistreatment just generally really pisses me off and covid19 has once again highlighted the level of prejudice targeted at us.

 

[Rufous McKinney]

CFS is a terrible name and myalgic encephalomyelitis is too long and not helpful. We need the branding people who worked on multiple sclerosis. That's some branding.

totally agree.

MS nabbed the two letter illness name starting with "M". Most folks have some at least vague idea that you don't want to have MS.

CFS is: i'll never say it, not ever- its the illness everybody tells me they had and recovered from. Since I'm not recovered from anything, 58 years later at least, you'll never hear the term from me. Its clearly inapplicable.

Next we have the famous viral illness that got major attention. It got the triple acronym: AIDs or HIV. Either of those, well you can SAY the acronym AIDs and HIV rolls off the tongue it seems.

So to brand it better, we need to be able to SAY it, and have it be distinct yet simple. ME sounds like me, a pronoun or M E, and either way, it lacks a distinctive quality.

To just finish my opining, technically I have an SEID diagosis. Some don't even recognize that around here.

Since it seems I no longer see other people, its simply not come up in, oh several years- the opportunity to utter that I have SEID.

It does roll off the tongue in a particularly way when you say it out loud, and it ends in Disease. And a clear statement Exertion Not Tolerated. I figure if I say it, to someone, I'll look the part. It will compute, finally.

And somebody will actually acknowledge it all.

But I am not holding my breath.

 

[Spanky88]

I am also in New Mexico and plan to wait until I come up in the ‘normal’ population in October—8 months after my last vaccination. I got mine through the Presbyterian system and they were wonderful.

Is this still happening due to the FDA recommendation not to give everyone boosters except the elderly and those who are "immuno compromised"?

 

[Mouse girl]

Yes, it's always a bummer when this kind of thing happens. I also say I have a neuroimmune illness. When they ask, i say generally: no one's heard of it or say the ME name in word form if they are curious.

My doc told me to get the booster at 6 months instead of 8. I will get it but it's funny since I'm so busy now and really struggling, i worry if it will set me back. I'm just having such a hard time so much sets me back and I can't afford to get set back because I have so much to do. Not that anyone can afford to get set back but if I was back in my good, stable environment, i could have been ok being set back and been able to rest and recover. Now.....ekkk!

Best of luck getting your booster next time. Try another place for sure. I hope you can get it without any questions.

 

[Spanky88]

Yes, it's always a bummer when this kind of thing happens. I also say I have a neuroimmune illness. When they ask, i say generally: no one's heard of it or say the ME name in word form if they are curious.

My doc told me to get the booster at 6 months instead of 8. I will get it but it's funny since I'm so busy now and really struggling, i worry if it will set me back. I'm just having such a hard time so much sets me back and I can't afford to get set back because I have so much to do. Not that anyone can afford to get set back but if I was back in my good, stable environment, i could have been ok being set back and been able to rest and recover. Now.....ekkk!

Best of luck getting your booster next time. Try another place for sure. I hope you can get it without any questions.

Thanks, yeah I am definitely going to change my approach to getting it this time. Give some different answers and go to a different location.

I understand your concern, my health is really on edge too I am in a crash. So that thought has crossed my mind if it's really a great idea. I am just scared of getting a break through infection with this thing because I am so weak. It's definitely a catch 22.

 

[maddietod]

I got my 3rd shot at CVS in Baltimore. I think the last choice for a qualifying illness was autoimmune disorder, so I checked that. The pharmacist checking me in also asked, and I gave the same answer. I was tired from the short walk over, hot from the same, and needed the bathroom...I used all of this to my advantage.