Nosupportsystem

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Community Voices

New Here & New to PsA & Psoriasis

Hiya! Well, I'm new to this group. I was diagnosed with PsA in January of this year, and have failed the first 2 drugs attempted. Tomorrow I start Tremfya as my 3rd, and likely final chance for treatment.

I'm a bit nervous that I'm going to react like I did to both Orencia and Otezla, and then I'm going to be left with no treatment options for it. It's already been over a decade of them telling me that I had OA, when in reality it has been #psoriaticspondylitis . The damage to my spine/neck/hips already is incredible. I've already been told that I will end up needing at least one hip replacement; they just *hope* I can hold off another 10-20 years (I was maybe 40 when they told me that).

What happens if I don't tolerate this drug? My only other potential option is to use a TNF-alpha inhibitor drug and very closely monitor my #Lupus (it's currently inactive). But there's a LOT at risk there. It's been a very long road with plenty of #negativesideeffects along the way.

#Psoriasis #PsoriaticArthritis #Anxiety #Depression #Stress #Lackofsupport #Nosupportsystem #AutoimmuneDisease #ThanksForListening

4 people are talking about this
Community Voices
Community Voices

Doing things for yourself is rough, I believe u all agree, like getting ready for bed, walking, getting up, sitting down, etc? I love my independence, but, wow.

I'm just 37yrs old, so so thankful for u all, yall, have been great support, encouragement, I'm just really struggling right now, pain is throbbing, constantly.

I, so so, get tired of people saying try this, try that, if u would get up and move more, switch doctors, this to shall pass.

Thanks for being my friends and family.

If all that will work, have u been diagnosed with all this???

I have

-Hydrocephalus
-Retinaopathy of Prematurity
-Carpal Tunnel
-Groin Pain
-Essential Tremors
-Shoulder Pain
-2L5 S1 Discectomies
-Knee and Ankle Pain
-De'quarveins Tenosyvitis

Some people may be trying to help, but, please, please don't shove it down my throat.

The thing that gets me, is people say I'll pray for u, ***WILL U REALLY???*** I'll be there for u, ***IF SO, WHERE R U???***

The religious people say, listen to this pastor, he has a healing ministry, the last time I checked, God is the only ONE healing.

Man, a lot of people just don't understand, don't get it, etc.

#Chatspace
#noshame
#Upallnight
#friendships
#lonely
#Lonliness
#Pain
#PainApps
#PhoneAppsForPain
#Painsomnia
#ChronicIllness
#ChronicPain
#CheckInWithMe
#EssentialTremor
#Christianity
#GroinPain
#Nosupport
#Nosupportsystem
#shoulderpain
#BackPain

6 people are talking about this
Community Voices

Update: Got stitches out today, hand feels amazing, now to do exercises at home, go back in 4wks, for another follow up, then to schedule the next Carpal Tunnel Release with Dequervains Tenosyvitis release, which will probably be a longer recovery.

Eyes have got worse, which is extremely discouraging, go back in August for a follow up for them, I could honestly care less if I go back to the Eye Surgeon again, although, God has gave me an amazing surgeon, I didn't think I would be losing my vision so fast (37yrs old).

Me losing my vision could be caused by several issues, it is just so discouraging.

When they were checking me for lenses today and flipping the lenses to see which one was better and we got to #7, I said, how far do people go up when looking for lenses, or measuring their vision for lenses, she said, #20, talking about extremely discouraging.

So, I went over to the Optical Shop and looked for just lenses, and just want to give up, then I went to Vision Works, their prices weren't any better, probably won't be returning to work til August, that is when I go back and see the Eye surgeon.

My Essential Tremors r worsening, when they were doing a field vision study, I guess it is called, I shook so bad. I can't handle much more.

Lonliness, friendlessness, finacial issues, vision issues

Man, when it rains it's pours.

So over everything

***PLEASE DON'T SAY YOU'LL PRAY FOR
AND NOT, PLEASE DON'T SAY, I'M HERE
FOR U, AND NOT BE***

#Chatspace
#no Shame
#Upallnight
#Christianity
#Friendship
#Friendlessness
#lonely
#Loneliness
#Nosupportsystem
#Pain
#PainApps
#Painsomnia
#ChronicIllness
#ChronicPain
#CheckInWithMe
#EssentialTremors
#VisionIssues
#FinancialIssues

8 people are talking about this
Community Voices

Oh, the pain...why is it so so REAL for us, but, people don't believe us?? The don't care, want us to get over it, quit talking about it, quit thinking about it, and it'll go away.

Y'all r my friends and family.

I'm tired of being told I'm here to help u, but, then when I really need u, where r u, oh, yeah, to everyone I'm a Horrible House Guest, Debbie Downer and Burden, because I won't do what u want, over it.

#Chatspace
#no Shame
#Upallnight
#friendships
#no friends
#lonely
#Pain
#no support
#Nosupportsystem
#Painsomnia
#ChronicIllness
#ChronicPain
#CheckInWithMe
#inthisalone
#Lonliness
#EssentialTremors
#Christianity

13 people are talking about this
Community Voices

The Pain is keeping me up, it is 4:00am and I haven't slept.

I have
Congenital Hydrocephalus,
Retinaopathy of Prematurity
Hypertonia
Chronic Knee, Ankle, Shoulder, Wrist Pain
2 L5 S1 Discectomies
Diverticulitis
Essential Tremors
Epicondylitis
Possible Neuropathy
Possible RA
Carpal Tunnel Syndrome
De Quarveins Tenosyvitis
Vocal Tremors
Groin Pain

#ChronicPain
#ChronicIllness
#CheckInWithMe
#Upallnight
#EssenialTremors
#lonely
#Lonliness
#vocal tremors
#Groin Pain
#Nosupport
#Nosupportsystem
#Chatspace
#Friendlessness
#Pain
#Painsomnia
#unloveable

1 person is talking about this
Community Voices

If u all don't mind praying for me, I need a financial blessing now, to go through the future. I've been off work since September, was supposed to have surgery for severe Carpal Tunnel and Dequervains Tenosyvitis, got diagnosed with Covid was getting disability, have no support, care, etc.

Not seeing the light at the end of the tunnel.

Thanks for ur prayers.

#Christianity
#Nosupportsystem
#unloveable
#Acceptance
#struggling
#blessing
#Jesus
#painflare
#ChronicPain
#Insomnia

7 people are talking about this
Community Voices

The chronic pain and sickness, the best way to describe it is like a human dart board, where r u gonna get hit next, when is the next pain wave gonna spread, when is the next flare???

We never know, that is why I'm thankful for accepting, caring, loving groups like this, woke up moaning and groaning in pain.

Morning and nights r the worse, but pain and sickness is 24/7

Thanks for having a page like this where I can come feel safe, secure, no matter what.

#Chatspace
#no Shame
#Upallnight
#lonely
#Pain
#Painsomnia
#ChronicIllness
#ChronicPain
#CheckInWithMe
#Loliness
#EssentialTremors
#Nosupport
#Nosupportsystem
#Friendlessnss
#unloved

3 people are talking about this
Community Voices
Community Voices

Rough morning, tremors were rough, was in bed til almost noon, been on the couch all day, which is great if I can make it here, some days, I just can't make it here.

Fixed supper Ramen Noodles, almost knocked off the boiling water, dropped the noodles, on the couch, I guess counting my Blessings that I don't have a husband, kids, or caregiver because of the way I am, I would hate anyone to see me like this.

I guess it is an amazing thing that my family doesn't care😢😭😢😭😢😭, this is just extremely hard, thank u all for not minding my daily, multiple times a day rants, being so supportive, caring, loving, thank u all for being my friends and family.

#Chatspace
#noshame
#Upallnight
#friendships
#lonely
#Lonliness
#Pain
#Painsomnia
#ChronicIllness
#chronic Pain
#ChexkInWithMe
#EssentialTremor
#Nosupportsystem
#NoOneCaresAboutMe

5 people are talking about this