Ali

#LongCovid since April 2021, #POTS, and more. I have a loving husband, Fur Momma to my BC mix and 2 cats. Praying for a cure/treatment.

[Ali @Alimae05150]

I had a wonderful life before catching #COVID19 and developing #longcovid

So did my husband.
Now it’s only a memory for us

[Hazie Thompson @haziethompson]

Need a little support?
Want company while you try a new medication?
Nervous about a medical visit?
Just want to talk about your day?
Drop by to chat with folks who understand.
DM’s open. Be nice. xo

[Ali @Alimae05150]

@HarryBoby4 Limbic impairment

[Ali @Alimae05150]

@coco_chatel I wish they could look into this narrative more, trialing a med and then more decline and loss of baseline after stopping med. this has happened to me so many times. Midodrine.Florinef. Allegra. Zyrtec. Cromolyn. Hydroxyzine. Legit declined and lost function with each one

[Ali @Alimae05150]

@Silas33 I think we do harm to the community when we tell people they never had ME if they get better. I think it’s why we see so little people sharing they’re doing better bc they’re immediately patronized

[Ali @Alimae05150]

DHEA and cortisol still raging 2 years later 👍🏻 thanks #longcovid

[Ali @Alimae05150]

@Naomi_D_Harvey I think if Debbie often😥

[Ali @Alimae05150]

@D_Bone 🩵🩵🩵

[Ali @Alimae05150]

@DYork1979 Ice packs on chest and neck when these surges are bad with the palps and anxious feeling and of course hydrate. Usually crackers like saltines or ritz bc sometimes it makes me blood sugar feel low too

[Ali @Alimae05150]

@haziethompson Gotcha, I don’t have the bandwidth to learn how fucked my genes are lol

[Ali @Alimae05150]

@thisistheillme I have been trying to figure this out!

[Ali @Alimae05150]

Want to know what’s awesome.

Having a pool in your yard for the first time in your life and for two summers in a row you’re too fucking sick to even manage the change of clothes and walk to your yard to get in the pool. Let alone swim.

[Hazie Thompson @haziethompson]

Throwing this out today because reaching this goal is still possible.
Because reaching this goal means surviving with the real possibility of thriving.
Because I haven’t given up hope💕
Thanks to all who’ve shared & donated.
https://t.co/pNgU1cYzOZ

[Ali @Alimae05150]

@HarryBoby4 This becomes significantly harder when ADL’s like showering or feeding oneself cause pem😓

[Naomi Harvey “PhD Witch” #WearAMask @Naomi_D_Harvey]

@agy_lena This is a very good point. Very expensive cancer medications are provided on the NHS even when their efficacy is not guaranteed and they’re experimental. Why are those with ME not given the same opportunity? Because of stigma and bias.

[Ali @Alimae05150]

@_katie_potatie_ I feel this. I hate how isolated our illness makes us. I used to talk to my sister daily. Now she checks in once a week or so. I’ve made a real effort to stay engaged as much as I can bc the depression started taking over and I couldn’t handle more loss.

[Ali @Alimae05150]

@_katie_potatie_ Everyone pretty much just stays physically away from me at this point but they check in via phone a lot. If they stop by they will put a mask on but I don’t let them inside bc they don’t take precautions anywhere else. Porch visit. Husband still masks everywhere for me🩷

[Ali @Alimae05150]

@Emma40025133 I know many think they’re on the same level but i can genuinely say I understand and feel your pain emma. Please message me anytime

[Ali @Alimae05150]

@KellyJean72 Yes flushing usually lets me know the mast cells are angry. I wish it was one or the other and never both

[Ali @Alimae05150]

If you have MCAS and ME/CFS- what is your tell tale sign your mast cells are flaring horribly vs PEM? For me when I’m really bad with MCAS-I have total body shut down and 10+ symptoms go rampant. With PEM it’s more just an overall i feel poisoned and more fatigue.

[Ali @Alimae05150]

@seeksboston26mi @TheExtraFiles With a lawyer! She just emailed me yesterday to tell me this when they checked on my case