Need Help - Hematology won't do testing

Jersey Girl...you and I are kindred spirits! I am also a fighter, and have fought the good fight for justice (especially in Healthcare system) to the point that my mental and physical health suffered. I've been fighting for my daughter's health since I was 26 (she was 4yo) and that saga lasted all of her childhood and into adulthood (she has 4 autoimmune illness). I'm so grateful that she is also a fighter and takes excellent care of her health. Now, I am fighting for my health. A couple of egotistical docs have "fired" me (lol) when I dared challenge them. But it is exhausting to always be on alert, and it wasn't doing me any good apparently. So, I have also stopped swimming upstream, at least not in a blatant manner anymore. I went from 100% adrenaline to cruise control and it is much calmer in my head! I still need to remind myself often to chill out! The world isn't coming to an end because I carry a torch to medical miracles. So, I sleep better and I walk 3 mi a day and that helps. Sometimes I just need to get out of my own way.

Yes. My daughter tells me I have munchausens and that I made everything up. Now she is going through her own terrible medical immune issues and that has stopped her telling me that but she won't share with me what's going on with her. I am my grandson's nanny. Sounds enough like Granny, no? Never do things with them except Christmas, Easter and maybe birthdays. But always "timed" exactly. She sends lots of photos when they do things and go places with friends, but the only time we see our grandson is when she needs a babysitter and she lives 4 miles away....Never calls on the phone. Only texts. When my bowel burst and I almost died three times during surgery, and I lost my job I was literally "alone" for over 5 years. No one called or visited. My boss sent me an email about how difficult the first three weeks had been without me!!!! While I was lay in a hospital bed with no doctor for three weeks with a colostomy and wound vac attached to me. So I learned to be alone. Even with a husband living with me. We were just talking about it last night oddly enough. He didn't get it when i said "I was alone"...

Posted by wiggins32 @wiggins32, We are rare; so it doesn't matter, we are skipped, ignored and passed over like we don't have a problem. I understand your story, been there done that and only insanity is facebook groups who traveled the same road. I never smoked, drugs or alcohol but people look at my lungs "stop smoking", scare tissue is from getting cold: cold induced asthma (Doctors like to think your smoking: not from cold weather or going outside.) I understand: hospital 30 days in Nov 2022 and no insurance (WBC 24-27-RBC 7.8 hemoglobin 19.2 and list goes on. Never was anemia (over load or leveled high all my life; first time anemia from Myelofibrosis goes on but I've been trying to get on disability for years, Doctor's notes 20 years back: Can't work due to cold (several judges denied me with doctors notes: Sept 25, 2020 denied again "judge said I was making up my symptoms (STILL NOT ON DISIBLITITY) 6 weeks later I was in hospital with cellulitis for a month $300,000. no insurance (infection as big as my arm in my back- hospital sent me home - no insurance for nurses so my neighbor next door would come pull my (packing out of my back and do packing) for free everyday for months. I would have died without my neighbors help) The hospital missed polycythmia 2020 so no insurance (son had SSI) that's what we have been living on for years. I was just diagnosed with polycythmia when I landed in hospital Sept 22-30, 2022 / this time medical emergency insurance (Insurance denied $85,000 hospital and medical bills so far "medically unnecessary " fighting it . This is medical neglected because of my rare diagnosis. So far the insurance only pays for medication, 1,500 on Hydroxyurea and numbers haven't come down (3 BPM 109/70 to 250/159 in mins) BP swings like my sisters (they go extremely low/high same doctor visit) I'm always high . If they would have catch polycythmia 2020: i could of had insurance and home health nurses but my neighbor has been my doctor/ nurse without a degree - she has saved my life several times (The government doesn't care if your alive or dead) ! We need this group: it's our only way we can feel normal in insanity world. God Bless YOU! My heart goes out to you!

Lol I was thinking the same thing hahahaha! Strong women put in horrid situations and having to find a way through the muck!! I never stop fighting. I think if I did I would die from lack of doctor / hospital care. And don't get me going about "hospitalists" 😡lol. Busy right now helping my 93 yr old neighbor who fell in the street last night and split his eye (he's ok- strong constitution). Already have a picture of where he fell and what it looks like to email to Town Supervisor to fix (fight worth fighting) but we should private chat sometime!
JerrysGirl

I had elevated wbc. My TSH went up FIVE TIMES when it needed to be suppressed. And my heart/ BP went to 220/110 8 days after first vaccine. Took a Whole bunch of heart tests all good except one case of A-fib on a 24 hr monitor. A year later I wore a one MONTH monitor that caught nothing. I had the labs before first vax. After first vax and after second vax just by accident so to speak. I know of what I speak. Twice I scheduled a booster and twice I cancelled it. My daughter took booster. Now is suddenly having extreme loss of hair (like me) and other autoimmune diseases, when before, she was a very healthy young woman. I fear for this generation and hope they don't make it mandatory for little kids.

Thank God for your angel neighbor! As much as the medical system, and government, have failed in your care for 20+ yrs, there are people who care. We aren't medical specialists by training, rather it's because we're forced to educate ourselves and others, and advocate for improved Healthcare. One person may seem insignificant to impact change, but there is healing within when we connect with others who understand. I am alone with my dog, but tiny miracles are out there. We must maintain hope and soldier on. Brighter days are ahead. Expect miracles, my dear raremiracle. ♥️

Covid was actually out in 2019 i believe. I think my daughter and her family had it because I had to go over and sit the baby because they couldn't stay awake. That was the first symptom of Covid if I'm correct.

Oh girl. I don't know of anyone in my circle who has had such adverse reactions to vaccines. My internist tells me I am prone to infections because my IgA is low. First time it was tested in 2018, and twice since then. Just a month ago, my IgA was 26, which is really low! Guess what? It can't be cured, and not even immunotherapy will help. What this means is that I am highly susceptible to infections in general. I only just found out about it! Now, I know why I've been chronic sick with back to back infections for years now. Also, I was told that this condition doesn't respond well to vaccines. Soooo. There it is. I've got all sorts of new Intel on my body from my new internist. She's amazing and I feel hope for first time in years. Finally have a 5-star doctor who also cares and listens. FYI, I lost over 50% of hair from Covid, but it's coming back over past year.

As for daughter, neither of mine wants to hear a word about my health issues. I'm not 'allowed' to be sick in their minds. Their father (we divorced long ago) died instantly a massive heart attack 5 yrs ago. That shock+loss was more than they could handle. It was same year that my health tanked. So, I have a theory that they NEED me to be healthy, even if I am pretending!! So, I stopped saying a word about my health 2 yrs ago. They don't ask, and I don't tell. They talk with me much more now that I've had a miraculous recovery (in their minds). It's much easier to be silent on such things bc I realize my health issues are a burden they can't carry. The thought of me dying is unbearable. It's very weird, but I understand it now and not bothered by it. I'm their rock. Mother/daug relationships are complicated on a good day, right? My grandsons have lost 2 grandparents (my ex and their Nana...my SIL mother). And their living grandfather almost died a year ago, too. So yeah. It's on me to stay healthy and ALIVE. And I am very motivated to stick around for their sake and my own. Hugs

They're great about doc ! Oddly enough I found a great PA who is a great diagnostician and tests for things other doctor don't. He's young and spiritual and knowledgeable. Perfect for me. I left the MD for him hahahahahaha!! I also feel hope for the first time. 😁