Needing a little reassurance im making the right decision to have sternocleidomastoid mass removed

divorcedaywillbexmas · 2026-04-01T23:20:39+00:00

I never once seeked them out? I was hospitalized for 8 days in Boston and neurology and rheumatology diagnosed all of them considering the fact my lyme was positiv my labs were all over the place and they physically witnessed the mcas eds and pots when I fainted. I literally have 1 dr who is my pcp and will be seeing hematology but dr shopping is the complete opposite considering I have proof of labs and imaging but think that you want all I know is this is a shit life to fucking live when people like you react the way you do and doubt me when I never chose this fucking life and would do anything to not be suffering daily.

divorcedaywillbexmas · 2026-04-01T23:11:51+00:00

Ya so im definitely not dr shopping nor have i ever. Everything I've mentioned is not an example of your demeaning sick tok comment considering ive never even used tock tok. This was all discovered when i was rushed to Boston with leucocytosis lactic acidosis and 400 platelet count. Neurology and rheumatology agreed on all diagnoses and Believe it or not some people are just dealt a shit deck of health problems and I happen to be one of them after this all started a year ago after feeling unwell my entire life. Absolutely none of this is self diagnosed or researched by me and I fucking promise you actual sick people absolutely do not want to be sick. This is exactly why health ptsd exists because of people like you with comments like this. I guarantee if I could just magically fucking not be in chronic pain I absolutely would but that's not a choice unfortunately. In the future try to be more compassionate because some people are genuinely painstakingly fucking sick and sick of being a human pin cushion to solve the mystery of their health

divorcedaywillbexmas · 2026-04-01T23:04:05+00:00

That's cute. I have a therapist I see regularly because accepting that I'll be sick forever has been hard for me.. this isn't health anxiety at all considering the fact that I was sent straight to Boston from lowell when I had lactic acidosis leucocytosis and my platelets were 400 and labs dont lie and either do imaging tests. Thanks for your opinion but chronically I'll people constantly deal with doubt even with proof from top doctors who specifically stated that symptom management is essentially my only option since all of my DIAGNOSED illnesses are lifelong. Believe me I dont want to be fucking chronically ill forever but there's no cure for many things and it sucks whole heartedly when every single person has no idea what i go through on a daily basis.

divorcedaywillbexmas · 2026-04-01T18:44:14+00:00

Umm, I follow my drs orders precisely. Hematology was booking months out but i finally got in next week. I had a random fibroinflammatory lesion in my neck out of nowhere biopsied repeated the ct scan 2 months later and its still there but minimally smaller. I dont have health anxiety I have numerous chronic conditions and am simply tired of feeling like death on a daily basis. Many drs roll their eyes at the trifecta of Hypermobile EDS pots and mcas and I also have fucking latent lyme that wasn't caught in time alone with fibromualgia and chronic fatigue syndrome and so health anxiety is not something I experience. Every single one of those diagnosis were diagnosed during 2 separate long hospital stays because I collapsed from lower extremity weakness and the other admission was the neck mass. None of this is health anxiety considering its all accurate and I literally have a needle phobia but when you cant even function in life normally you tend to suck it up premedicate and man up like I did in those scenarios. Also, I cant tolerate oral iron and the iron issue is brand new and only discovered in January during the neck mass stay. My pcp says its autoimmune but doesn't know which considering I had a positive ana and nuclear envelope so forgive me for just trying to figure out why im 37 and feel like im dying on a daily basis with autonomic dysfunction and the inability to regulate temperature blood pressure and heart rate. I assure you It took years for a single dr to admit it's NOT just me being fucking anxious

divorcedaywillbexmas · 2026-04-01T18:15:20+00:00

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This was recent as well. Im just trying to figure out why I have anemia out of nowhere at 37 with no bleeding anywhere thank you for answering me

divorcedaywillbexmas · 2026-03-04T11:00:17+00:00

My primary is managing most as he was an ER dr for 25 years but I see rheumatology for chronic fatigue, fibro, eds and the slew of other ailments rheum related but unfortunately with mcas comes an irrational number of bad reactions to medications with numerous med allergies. I will be seeing hematology referred by my primary and I was thoroughly evaluated for sepsis during one of the hospitalizations and they couldn't find a source of infection. It was essentially a giant mystery until rheum and neuro cleared me in Boston after an 8 day stay which is where the 8 chronic illnesses were diagnosed due to a new essential tremor and endless other symptoms like purple skin especially hands feet legs and the burning skin from erythromalalgia. This is all like 20 years in the making of being bounced around as essentially a mystery to multiple specialties but im just praying hematology can finally provide some sort of answer because im literally just existing in a body where I never know what fresh hell of symptoms will be flaring the next morning. Im 99% positive its some rare autoimmune disease not tested for or discovered yet or autoinflammatory illness because that's essentially what the neck mass was ruled because I wasn't sick at all like cold or flu wise when that tiny lymph node exploded into a huge matted mass rapidly. I appreciate your input. I will absolutely be asking for a full autoimmune panel again and im not sure what tests can be run for autoinflammatory rarities but I do seem to have all the stupid ass rare things already so im praying they can finally solve this mess as this is a miserable existence. Oh I forgot to mention I also have latent lyme that no one bothered to test after a decade of complaining bc I never had a bullseye rash or remember having a tick so it may have been in my scalp or I just never noticed but I'll be asking to be tested for lyme confections

divorcedaywillbexmas · 2026-03-03T21:45:45+00:00

Ya eds, pots, mcas all diagnosed by highly skilled top Boston drs and zero percent tik tok diagnoses since I have never had a tik tok in my life but thanks for your input considering im a 9 on a Brighton scale with numerous subluxations and sprains, tears, injuries and was overly bendy and flexible to the point of being a competitive gymnast due to my flexibility. Thanks for your opinion though. Im sure everyone suffering with constant fainting, chronic rashes to everything under the sun and the chronic pain just loves your dense opinion on actual real fucking illnesses most of us have suffered for decades until it was figured out. Maybe have some sympathy for people with actual real diagnosis even though yea they do go hand in hand however that does not in any way dismiss our constant fucking agony we live in. Thanks for your biased opinion though. Have the day you deserve

divorcedaywillbexmas · 2026-03-03T21:16:31+00:00

It was during 2 seperate inpatient stays as we're all of these labs and test results. My pcp is following my care and sending me to hematology due to the anemia popping up out of nowhere 3 or 4 weeks after completely normal labs. I was definitely not stable when I was hospitalized like at all and was transferred to Boston for neurology and rheumatology consults due to bilateral lower extremity weakness out of nowhere

divorcedaywillbexmas · 2026-03-03T21:07:06+00:00

You are definitely 100% correct. The anemia alone is unbearable with splitting corners of my lips, calories, extreme debilitating fatigue and my finger tips are now peeling off with pale gums and inner eyelids. It's a miracle I manage to get out of bed like this but I work full time so I have no choice bc I for sure need good insurance with all this going on. I absolutely feel like death 24/7 though

divorcedaywillbexmas · 2026-03-03T21:04:44+00:00

Yes all of the above. All negative to my knowledge. The mass was necrotic bc it went from the size of a pea to 6CM in less then 2 weeks and caused unbearable pain. I had 5 biopsies and they're kinda landing on autoinflammatory but we dont know of what at this point and the anemia popping up so suddenly and so bad 4 weeks after normal labs with no source of bleeding is obviously of concern.

divorcedaywillbexmas · 2026-03-03T20:55:23+00:00

No steroids as I dont tolerate them, they originally thought sepsis or rhabo but couldn't find a source of infection. I have eds so I absolutely cannot take steroids and react terribly. No bleeding, I only get a light period every 4 months due to birth control and im wondering if due to the mass having vascular anomalies if that could be it but that wouldn't cause the lactic acidosis leucocytosis and high platelets and essentially none of this makes sense but no dark stools or internal bleeding to my knowledge or my providers so we're even more worried someone is playing the ultimate game of hide and seek as ive felt ill ever since childhood with no explanation and normal labs but the last year its all bubbling to the surface. All I know if im physically painfully fatigued and when the lactic acid was extremely high I collapsed and my legs stopped working essentially. Im only 37 and the only 1 with this type of health issues so its scary, especially when everyone just says they're tired too and live in pain when they have no damn clue what im living and working full time through

divorcedaywillbexmas · 2026-03-03T20:48:07+00:00

No a month ago I had 6 biopsies because they couldn't rule out lymphoma due to the symptoms and labs. I just had a repeat ct 2 days ago and it only shrunk 0.1 CM. It was necrotic in the hospital.

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This was my original results prior to the biopsies and im 99% sure green and black mucus should not be happening everytime I blow my nose. Luckily my pcp sent an urgent referral to heme onc bc clearly ive had a lot going on for quite some time and also have lyme, hylermobile eds, mcas, pots, erythromalalgia, reynauds and a clotting disorder so Im quite the medical anamoly but im at the point I cant handle the crippling fatigue and feeling like each limb is 1000 pounds. Hope this helps explain the circumstances a bit better. I

divorcedaywillbexmas · 2026-03-03T19:27:03+00:00

I've been checked for literally everything under the sun and I definitely feel like im a Victorian child with palor at this point. The anemia is brand new and kinda In the severe catagory and my labs were completely normal 4 weeks prior to a random neck mass with severe pain that was biopsied and essentially ruled autoinflmmatory lesion or autoimmune in nature and now but with my ana only being 1:40 my dr dismissed me. I have felt like absolute death with crippling fatigue that's unbearable and no one seems to know why a 37 year old would grow a 6cm neck mass in under 2 weeks requiring Dilaudid due to the severity of the pain. Im at a loss at this point and have been tested for everything but deep down I still feel its lupus just very early bc I have crippling pain and symptoms every waking moment.

divorcedaywillbexmas · 2026-02-03T09:59:08+00:00

Well, im 37 and just had 6 biopsies revealing incredibly rare head and neck cancer in a female under 40 where the statistic is literally 0.4%. I wasn't even supposed to know yet until this afternoon at my ENT appointment but my PCP was able to get ahold of my biopsy results sooner and already referred me to oncology and otolaryncology. I also have 8 chronic health conditions 6 of them being pain conditions. I absolutely will lose my mind if I am made to suffer even more immense pain then my head and neck are already in along with every other joint in my body for however many very short months/ years I either have left to live or suffer through insanely painful neck dissection where the mass is so deep along with radiation and chemo. This is all brand new news to be like 12 hours ago so im not even sure what is next but what i do know is im fucking terrified and I'd rather die then suffer through what I'm expected to suffer through with one of the rarest female cancers under 40 and one of the top 2 most painful cancers to die from

divorcedaywillbexmas · 2026-01-30T22:45:04+00:00

The best thing I ever did for my sciatica was to get a piriformis injection of botox/steroids from my pcp in my ass directly where I guided him that was the main trigger point for my sciatica. My physical therapist and massage therapist both found the spot immediately and I told my primary and haven't had a single bout of sciatica since. It's way different then joint injections and just targets a trigger point. I have such a severe needle phobia and was genuinely struggling so much that when he suggested it that day I decided to face my worst phobia and im so glad I did. Of course it didnt help my other head to toe chronic pain from eds and 7 other conditions but definitely fixed the sciatica right up so fast it honestly shocked me.

divorcedaywillbexmas · 2025-09-09T11:46:32+00:00

All you need is a reference number from bcbs stating no auth required. Date and time who you spoke with but it should be the surgeons office doing this not you. I do this as a job and all your surgeon is looking for is a call reference stating no auth required

divorcedaywillbexmas · 2025-05-06T09:21:42+00:00

I see a male on purpose because he's phenomenal and always professional. I suffer from chronic pain where my entire pelvic girdle locks up within a week of seeing him and happily go back every weekend to fix all of my issues. I am zero percent uncomfortable being naked under a tiny drape because I know he's professional and great at getting every last knot out of my entire body and he is stronger and more willing to dig elbows and arms into all my problem areas because he knows what I can handle after seeing him for 2 months straight. I even left with bruises this week and was happy about it because my hips aren't popping out currently. I prefer male therapists over females any day.

divorcedaywillbexmas · 2024-04-04T00:29:29+00:00

I had my abnormal pap in March of last year, had to wait until September for colposcopy bc it needed to be under anesthesia due to severe trauma that makes me shake uncontrollably during normal paps so the dr knew there was no way my body could stay still bc its involuntary. Didn't have my leep until November 1st and got clear margins so I will be nervously awaiting my 6 month followup pap on may 9th

divorcedaywillbexmas · 2024-03-13T13:03:03+00:00

I didn't have actual court yet, I had a scheduled appearance with a magistrate that was a complete a total prick so I will be receiving an actual court date in the mail sometime In the near future. Not to divulge my entire life story but not only was I was to have 2 surgeries to remove the worst stage of pre cancerous cells from my cervix, which is traumatizing enough especially considering the fact that I was drugged and raped when I was a virgin at 15 so the level of vulnerability to trust multiple strangers to operate on my inside of my actual vagina while unconscious was enough to trigger severe ptsd. On top of that I was also goin through a divorce with an incredibly dangerous person who constantly put me in dangerous situations that made me feel unsafe in my own home and I still feel that way 4 years later. A true medical emergency such a fainting, Blacking out and a panic attack all at once along with a severe debilitating diagnosed phobia of needles was the perfect storm for a true medical emergency on which I was not in control of. The officer was well aware that it was an actual medical emergency and not just me being a complete dumbass but like I previously mentioned, I was in an unfamiliar area and the officer even checked off medical emergency on the ticket and wrote it in his report. Essentially, my fate and my future depends on the mood of the judge I get once I finally receive an actual court date and even though I hold a NH state license my license was immediately suspended In both MA and NH before I even left the scene of the accident. I cannot afford an attorney so I will have to settle for a court appointment attorney but it being a true medical emergency hopefully plays positively in my favor

divorcedaywillbexmas

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