Need Help - Hematology won't do testing

Holy mackerel !!!! I had the two Pfizer vaccines. I'm hearing snd reading now that people can "choose" which vaccine they want, a lot are picking Pfizer and having issues. You don't have leukemia do you ? That would cut your antibodies out totally from vaccines or boosters. I have chronic leukemia. 6 wks into start of meds I caught Covid and had to go off them to take Paxlovid. Felt great on that restarted meds and rebounded bad. Then couldn't tolerate meds so stopped. Now four months later nodes are popping out like crazy and I am scared. Covid had changed the world for the worst.

I don't have blood cancer, and sad to hear you do. They don't know what the root cause(s) of my 4-yr long saga is, but my new primary is sending me to an immunologist initially bc of abnormal bloodwork. As for the impact of Covid in general, I don't think the long-term impact has been felt fully as of yet. I think it will be a few years to grasp the depth and breadth of the global impact. I retired bc of it; not bc I was ready for retirement, but because I have Long Covid. It propelled the aging of my body tenfold. Went from being energetic, full-speed Corporate America mgmt level, with great career financially, to full-stop in every category.

You are absolutely right. If I was standing next to you I would give you the biggest hug ❤️. I understand totally what you are feeling. In 2015 I was diagnosed with leukemia when my bowel burst on my birthday. I never went back to work. To the job I loved. And I might have family but I am more alone now than I've ever been in my life. I think we all need more hugs and less hate.

Awww. I would gladly hug you back! There's a huge gap in society, and even our families, connecting dots between the physical illness and PART TWO, which is the physiological illness associated. Most people are uneducated how the brain is affected by medical conditions. In my own family, no one could see my illness, e.g. I didn't look sick. And it was almost a curse that I had always been super healthy...never hospitalized, no broken bones, no Rx meds, etc. This was the case until my early 60's. Adding the "you look fine" element, I was told very painful things (by my most immediate family) that I was "attention seeking", "making up illness to get sympathy", etc. So, I really understand what you are saying. Being very sick is hard enough, but dealing with loss of our identity in the world (career, social life, family events, friend time, etc) created an isolated life for me that I had never known. I hadn't done anything wrong; yet I was feeling punished for being less than 100%. Not only did doctors accuse me of imagining illness, but my employer ridiculed me, friends fell by the wayside too. We may survive the medical crisis, but it's hard to unfeel, to unhear, or to unhear the hurtful things said in our most vulnerable times. The emotional toll of physical illness lasts much longer than the body's recovery. I have heard this from too many people to ignore it. What do you think and feel about it? Hugs

Post Note: My last post just minutes ago was not intended to paint a "poor pitiful me" message, in case anyone reads it that way. The intent is to enhance awareness to the mental struggles that often accompany physical illnesses, and especially chronic illnesses. Thankfully, the U.S. is beginning to accept Mental Health issues as a valid, legitimate concern for our Country. People who struggle with mental health issues are more willing to speak up. This is a positive reinforcement and step in right direction. But my hope is that people with chronic medical conditions don't have to suffer alone, or in silence, or feel isolated.

Actually started before Covid which got me in July 2021. I became really sick in early 2020, though tested negative for Covid then, I'm still not convinced that I had Covid twice...2020 and 2021

Wiggins. No pity party. A sigh of relief party that I am not the only one who has issues that doctors don't understand whether by choice or not. I'm a fighter. I fight everything and everyone who is wrong or evil. I have started letting a lot of fights go by the wayside as it just isn't worth it. I feel better. BP down lol. But in my heart I still feel those voices calling out - help! Help! Help! And the anger forms and I rise to do battle again. As my body begins to crumble ever so slightly...

Posted by wiggins32 @wiggins32, Nov 28, 2022 My heat goes out to you. I have Polycythmia/ Myelofibrosis (Leukemia) Born with Cold anaphylaxis shock = never got diagnosed until I moved to Florida.) Home Hospital Study with weekly nurse growing up., years with vocational rehabilitation; I can't work , trying to get on SSI and judges don't believe in rare diagnosis. Doctor notes; Can't work; Every time I worked, cough, vomit, lost my voice, pass out, racy heart (zoom to 200/150 BP) not zoom down All the cardiologist told me my heart was fine, only 50 years later I must of had unknow blood disease; like my 40 year old who died 2 hours after she saw doctor, that said you broke your leg, didn't listen to other symptoms. your fine go home = death! Same with cold urticaria; Facebook CIU; 1# issue It's life-threatening and people laugh and make fun of you. No one believe you can died feeling cold. Lucy didn't have cold urticaria; unknown blood disorder - corner couldn't diagnosed it; but he found blood disorder the doctors all missed. Because it's rare , we get passed, skip and ignored. I'm sorry

Oh my. I can't imagine the nightmare of lifelong disease with no support, answers, and no way to earn a living. I'm so sorry. And you lost your daughter too? I'm so very sad for you. The only way to get approved for disability is with a lawyer, sorry to say. Do you have emotional support from friends and family? The hardest part is isolation for me. I'm also in Florida. How does the heat effect you?

Not to add fuel to frustrations of misdiagnosis by doctors, but I was in hospital in 2021 with Acute anemia (HGB was 6.5) and acute pancreatitis. My WBC were thru the roof, and platelets 1,000. Had already been dx with a bacterial infection by my PCP. The hospitalist took easy road and determined that I had alcohol-induced pancreatitis (I don't even drink). Basically threw me to the curb thru discharge, only for me to return 3 hrs later via ambulance. I refused to return to that hospital and will never go back. The worst part was being mocked by the nursing staff bc the doctor had encouraged them. It was so humiliating.