Any advice or ideas

[Baby_Snaer]

Ive had a rocky journey since i was a teenager i was diagnosed with hpv and cervical cancer at the age of 18 had a leep procedure done was on medication radiation pills was given until may of 2015 to live by the grace of god i was on remission in may of 2015 due to a miracle happened and i found out i was pregnant with my son out of a miracle i had a high risk pregnancy and delivered him early health baby boy in December 20 2015 he was my early Christmas gift i was experiencing pains aches ive never felt after he was born found out i had lumbar stenosis for sure in 2017 and cracked and displaced disks in my Lower spine or what not had to deal with it since i wasa new mommy and was loving it but my aches and pains all over my body were progressing worse i thought maybe my spines messing with my nerves but nope not the case and then my journey started to get even worse and rocky after being a victim of a hit and run in feb of 2019 i started noticing bloody stools bloody mucus on and off constipation i was-going to a physical therapist where he said talk to your gp your-showing signs of 3 different things fibromyalgia, rheumatoid arthritis, or lupus and physical therapy might not help you any more. So i got referred to a rheumatologist a gi doctor and had a colonoscopy in aug 2020 then my problems got worse soon after my colonoscopy i couldnt go to the loot for a month was hospitalized 2 times then gi doctor gave me linzess yet to no avail i was only using the loot once a month if i was lucky and it got extremely bad to where i can go 2 months with not using the loot to where now i have to manually try and help myself and it’s excruciating along with my body aches getting worse muscle aches bone aches to times where i couldnt even get out of bed or do anything not even with my son and it hurt me seeing my son asking to play with him and asking me if im sick or hurting asking me if he should run the bath for me it was debilitating and sad to not be able to be the mom i want to be and my 5 year old son taking care of me even while still having issues i cry at night to sleep knowing he sees me suffer and is so understanding im crying just writing this damn life story i feel like im crazy and a hypochondriac even tho i know im not im frustrated and hurting anyway after seeing a rheumatologist for a while in October of 2019 i was put on plaquenil and prednisone and finally diagnosed with lupus in march of 2020 i kept getting wheened off my prednisone and plaquenil yet i kept having the usual horrendous aches pains rashes hair loss and exhaustion i told my doctor i didn’t feel any better having flare ups as he called it but didn’t do much for me i asked for disability and he made me pay for the papers to be signed and then refused to give me a note of reduced work hours to be approved for disability and said you wont be approved with your lupus your fine yet he made me pay money i didn’t have 250$ to be exact to sign the damn papers and tell me no! Mind you i tried to apply as soon as i found out which was 03/11/20 he took 8 months to fill out my papers 11/18/20 and then in November i asked him that all i needed was a note from him to reduce my hours and im approved because i already spoke to my worker due to suffering with a-lot ptsd from accident depression anxiety lumbar stenosis lupus migraines etc. which my worker said you’ll be approved all we need is your doctors note reduced hours and current treatment and he said no! You wont be approved and you are perfectly fine ! While im having horrible pains aches and flare ups and he doesn’t believe ive me ! So i 🥾 booted 🥾 his ass out my life along with my gi doctor who didn’t treat me or believe me on my constipation either and asked to be sent to new doctors and it worked and my new gi doctor on my first visit explained to me finally what i suffer with getting me tested for chrohns and everything my chrohns panel was high but wanted to run more test to fully diagnose me and treat me the way i should have been treated to begin with i will definitely need surgery to remove some of my intestines due to i have twisting in my intestines and an excess amount of intestines so i suffer with on n off volvulus 3 hernias which where never caught and waiting for endoscopy and defacography this gi doctor made me feel better to not feel crazy and not to mention as well finally on the day i met-my new rheumy he without hesitation gave me disability for 2 months which im currently still in and waiting to see him again in 2 weeks he on my first visit took his time to listen to me understood me where i didnt feel as crazy any more and he told me i seem to suffer with more then just lupus but fibromyalgia ! And possible IBD Chrons !!! Possible IBD connected arthritis!!! That having one autoimmune disease can cause you to end up with more then one autoimmune disorder Whatt!!! So i had blood work done been on disability since 04/06/2021 no work and on the FMLA at Work i see my doctor in 06/08/21 to see bloodwork results and how im feeling im having a bit less flare ups but i still don’t think work is going to work out for me anymore and i might have to resign since i noticed a difference in how i feel i have really bad days but im afraid of not being able to stay on disability and not knowing whats next possible ostomy bag and my blood work looks normal but i have indescribable pains aches and cant move or hurt all day almost every day still am i crazy or is this normal i seem to find one thing on top of another thing i end up with and i feel like a failure to my parents my spouse and my son like a let down that i have more and more to deal with and problems sorry i rambled so much im just frustrated hurting and dont know how to go about it or if I’ll even be allowed to stay on disability recent blood work shows most normal things my ds dna anyibody went up by 1 my ana negative and my rnp is positive and other then that idk what else to feel or do any ideas suggestions or help to cope with how i feel

[svfarmer]

Hi and welcome to the group - are you in the US? Things are different here in the UK regarding disability benefits so can’t really comment on that but just wanted to say I’m so sorry you’ve been going so much at the moment , please be kind to your self and don’t think your letting your loved ones down, they will love you regardless and be very proud of every thing you deal with . It’s clear you love your son to bits and he will love you to bits also ❤️

[Baby_Snaer in reply to svfarmer]

Yes im in the us and clearly horrible system they have here with certain doctors thank you for you very precious and kind words that makes me feel so much better to know im not alone i love him with all my heart he melts my heart and has been the reason why i try my best and keep my head up

[svfarmer in reply to Baby_Snaer]

I have 3 grown up sons who are so caring and loving - sons love their mums deeply ❤️

[Baby_Snaer in reply to svfarmer]

Awee thats so sweet well im glad i was blessed with my son he’s been super loving understanding and sweet he caters to me when his father isn’t home he thinks he picks me up and is so strong when he pulls me up lol holds my hand and walks with me until i get to wherever i need to get to lol its the most adorable thing but also breaks my heart he’s doing so much for me without realizing it 💕

[svfarmer in reply to Baby_Snaer]

Ahh you help each other - he sounds the sweetest little boy ❤️

[Baby_Snaer in reply to svfarmer]

Indeed he was indeed a huge huge blessing and miracle for me

[Roarah]

I found the most effective treatment for my quality of life is my EMDR and ACt therapy to treat my medical PTSD and centralized post stroke pain. This along with working and walking daily actually gave me back my life.

My husband was diagnosed with rectal cancer his , albeit temporarily, stoma was really not as bad as it seems. He only missed a week of work through out his cancer surgeries and treatment. You might actually find your quality of life will improve with the stoma as well.

I too am in the us my team of doctors( neurologist, cardiologist, hematologist and rheumatologist) all offered to sign off on disability but working actually helps me carry one with living rather than suffering.

Good luck.

[Baby_Snaer in reply to Roarah]

I found being away from work kind of calmed down a bit of the bad flares idk if its just the stress I’ve been through im hoping to soon see my gi doctor and get answers as well i think i will benefit from a stoma instead of suffering through this any longer i have a couple other appts coming up hopefully i get the answers and help i need soon thank you so much for your advice and input as well i really appreciate it and ill take that with me on my wacky journey

[Jmiller623]

Hi Baby! First and foremost.... I am very sorry for the trials and tribulations you have been through. Glad you found docs that are listening to you.

Your lab panel has some low positive antibodies that could indicate lupus or even mixed connective tissue disease. However, the titers aren’t out of this world high. A rheumatologist could swing any which way in treatment with your labs. It actually may give you more options if rheum played their cards right.

I definitely think it might be worth asking about spondyloarthropathies which are connected inflammatory bowel disease. Ask for HLA-B27 test esp with your spine issues. I hope you are going to continue seeing a rheumatologist who should really be helping to better control your disease. Plaquenil takes like 6 months to have effect and even then, doesn’t usually make a dent in severe arthritis. Many wind up on methotrexate for inflammatory arthritis.

With regard to the workplace, feel free to DM me. I used up all of my FMLA and refused to leave so they had to fire me. And then getting on disability was easy because being terminated (and not for incompetence) basically for my illness (which is illegal) forces their hand to help you. You can’t work at a place you’re not wanted. I am still in the process of fighting for SSDI. It’s been going on 2 years now. 😳

If you haven’t, tee up an employment attorney for a free consultation to make sure your workplace doesn’t do you dirty. Save all documents and emails. Do it now in case they revoke access to any company communications platforms. Lawyers can also help push your doctors to turn in the right forms but this would be a disability lawyer. They typically work for free if applying for SS disability. Don’t talk to HR unless you absolutely have to.

Sending hugs. ❤️xx

[Baby_Snaer in reply to Jmiller623]

I really appreciate all this help i am planning on waiting to see what happens supposedly work wants me back asap but if im kept on more time off who knows how they will react like you say so far ive tried to play it off as it goes andsee what happens i know its a hassle to get things done with the system the way its running now 🤞🏼Heres to hoping things turn out good

[Hidden]

Your not a failure. Discuss with Dr if you feel too I'll to work, the new team of drs will hopefully get to the bottom of things to improve your quality of life. You need support. Reach out to parents, friends and ask Dr. Things will get better in time but y need support.

[Baby_Snaer]

Thank you I appreciate that and I’ll definitely talk to my doctors and hope that now things will settle ill update everything on here when i get any answers